Podcast appearances and mentions of john bukenas

In this episode of "Rubberneckers," hosts Jodie and John welcome back Mike from the Wheelbarrow Full of Dicks podcast. They delve into a variety of intriguing topics requested by their listeners. They kick off the episode by discussing the trend of celebrities adopting black children from Africa in the 90s. Madonna, Charlize Theron, and Sandra Bullock are mentioned as notable examples. There is some confusion surrounding Sandra Bullock's adoption, with speculation about whether it was a real-life adoption or a reference to her movie, "The Blindside." The hosts also address the issue of trolling on various Discord channels, acknowledging that while they have retaliated against trolls, the trolls have resorted to insults, referring to the speaker as an "old boomer." There is also mention of a $10 super chat from Bud Bugger 78, who goes by the name Zermithra Ryason, sparking speculation about their ability to speak Klingon. Another topic on the podcast revolves around a person named Eric Zane, who has apparently started something negative. The hosts, Jodie and John, discuss a previous episode where Eric discovered John's real name, John Bukenas, after years of podcasting under this name. This leads to a discussion on the consequences of using real names online and how younger generations have learned from the mistakes of older ones. In addition, Mike shares an amusing anecdote about removing a windscreen from their podcasting setup due to earlier criticism. However, they later realize they had forgotten to put it back on, feeling self-conscious about its absence. The episode takes an unexpected turn when Mike recounts their experience of having a cyst removed and pretending to be scared to indulge their wife's interest in pimple popping. They also touch on the controversy surrounding the term "redskin" and propose a different approach for the Washington football team's name to pay homage to a specific tribe. The hosts briefly mention Dane Cook's marriage to Kelsey Taylor and discuss the use of Instagram for dating among younger generations. They also touch on a gun control discussion where the speaker argues against allowing certain individuals, like a gay person or someone afraid of guns, to possess firearms. Overall, "Chief White Calf" covers a wide range of engaging and thought-provoking topics, providing listeners with an entertaining and informative podcast experience. Follow Us https://www.facebook.com/rubberneckers20 https://twitter.com/RubberneckerPod https://www.twitch.tv/rubberneckerspodcast https://discord.gg/nYwz8e8Wwr Check Out Our Other Shows Po Boys Brand X Boomer Bunker Mike's Link https://wfodshow.com/

Take a deep dive into the future of Tandem Diabetes. In December, the company laid out an ambitious 5-year plan to update software, move to a smaller pump and ultimately a tubeless version. Company leaders say they want to think even bigger and we're talking to Chief Strategy Officer Elizabeth Gasser. We'll go through the short term changes Tandem has in the pipeline like the tiny Mobi pump and talk about philosophy and more. Tandem R&D Presentation (slides)  Tandem R&D Presentation (replay)  This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Episode Transcription Below (or coming soon!) Please visit our Sponsors & Partners - they help make the show possible! *DEXCOM*   Stacey Simms  0:00 Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921 where Diabetes Connections are made. This is Diabetes Connections with Stacey Simms. This week, a deep dive into the future of Tandem diabetes. That company laid out an ambitious five-year plan to update software, move to a smaller pump and ultimately move to a tubeless version. company leaders say they want to think even bigger.   Elizabeth Gasser  0:37 we have thermostats that manage our home temperature for us. We have self-driving cars we have on demand consumption services that you know, help us get our groceries and plan our meals. Come on. We should demand that level of ease of use in what we're doing here as well.   Stacey Simms  0:54 That's Tandem Chief Strategy Officer Elizabeth Gasser. We'll  go through the short term changes Tandem has in the pipeline like the tiny Mobi pump, she'll answer a bunch of your questions. We'll talk about the philosophy of the company moving forward, and more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, I am only so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. back in December Tandem made a big splash with their very first research and development presentation. If you haven't seen that, I highly recommend that it is rather long, but it's definitely worth checking out. I'll link that up in the show notes. And you can always find out more at diabetes connections.com. But in this R&D presentation, they laid out a very ambitious five-year plan for the company, which we're going to go through and talk about in detail today. Quick date check for you This interview was taped on January 10 2022. And we're releasing it on January 25 2022. So as of right now, the FDA has not approved anything new for Tandem no Mobile bolus that is in front of the FDA, and we'll talk about that and so much more. There were a few questions I didn't have time to get to or that you sent in after the interview. So I sent those to Tandem and I will come back after the interview. I'll update you and answer what I can also after the interview, if you are a health care provider, a diabetes educator and endocrinologist if you work in those offices. And a very specific question for you. Please come back. I'll make it quick. But I need some information. And I know you will can help me. Okay. My guest this week is Tandem Chief Strategy Officer Elizabeth Gasser she says Call me Liz. So I do. Her background isn't in diabetes, it is in strategy and corporate development, working at Qualcomm in their internet services division and at open wave systems, the world's leading Mobile browser provider at that time, and we talk about what it's like to come from that world to this one, I think it's really important to kind of get an idea for these individuals, you know who they are, who are making these decisions that affect so many of us. And of course, we go through that 10 to five year plan product by product.   Liz, welcome to Diabetes Connections. Thank you so much for joining me, we have a lot to talk about today. Thanks for being here.   Elizabeth Gasser  3:24 Oh, my pleasure. I'm excited to chat.   Stacey Simms  3:27 There are a lot of items that Tandem announced in December, there's a lot to go through there. But I wonder if we could start kind of by backing up a little bit I've heard that you Tandem is kind of talking about being less of a hardware company, right, the pump, which will always be there in some way, shape, or form. But thinking more about the software, can we step back a little bit from the products here and talk a little bit more about kind of the philosophy or the vision? Oh, happy   Elizabeth Gasser  3:53 to and if you've watched our R&D day, you'll you'll know that I do enjoy expanding on this particular topic. You know, as with any connected device, the minute you take a piece of hardware, and you give it a cellular connection or or a Wi Fi connection or a connection to the Internet, you've opened up the potential way to do an awful lot of creative things with both data but also with software, it really opens up the potential for continuous update functions and capability. And then also the ability to pull and push data back and forth from a device and and once you've done that, you you really crossed into that that world of the Internet of Things which requires you to be both an excellent hardware company, because you're managing the device, the functions of that device. It's touchpoints through connectivity, but it also requires you to be an excellent software company along the way. And if you look at the Tandem journey over the past five to seven years, you really do see the company's products moving down that pathway. Of course, the pump remains front and center for us it you know, the delivery of insulin is what we do. It's how we bring that therapy benefit to our users. But you also see a start to do things like the ability to update the pump software itself that unlocks new features and functionalities, including the algorithms which we can now continuously update, it allows us to update the different types of devices we integrate with, you'll see we've obviously moved from supporting Dexcom, G5, two, G6, and we're moving to G7. That's all done through software updates. And so it's really hard to be in this space and to be talking about connectivity and connected devices without also embracing the fact that you really are a software company and have to be incredibly good at it to deliver the value that you want to deliver to your customer base.   Stacey Simms  5:59 I do remember years ago, our first pump and I say our work has been he was to when he got it. So it was definitely it was a group effort. But it was the Animas pump. And then a few years or months who remembers after he got that there was an update, where you could bolus from the remote meter. But we had to wait until our insurance would cover until we were up for a new pump. We had to wait I think three and a half years before we could get that. And so when we switched over to Tandem, I think we had the pump for a month when we there was a software update. So it really has changed. And to your point it is it is really remarkable to see that. Let's talk about, as you mentioned, the R&D presentation and some of what's in development. And of course, the usual disclaimer, I am sure that a lot of what we're going to talk about here is in development, it is not FDA approved. So there are limitations, I'm sure about what you can and cannot speak about. And if you can't answer something we totally understand. But let's just jump on in and kind of go through a list here. My listeners are extremely interested in getting some kind of update on the bolus by phone, which is in the FDA hands. But I have to ask you about   Elizabeth Gasser  7:07 I figured you would like the the world is obviously a very unpredictable place these days, not least when it comes to projecting FDA timelines. That said, we still feel very confident and we're planning on an early 2022 approval. So I can't say much more than watch this space. But we're still leaning into the timelines. We talked about it R&D Day and looking at getting this much requested feature to our user base as soon as we can.   Stacey Simms  7:39 Can you share with the rollout process may be? In other words, will it be a simple update to the T Connect app? Will there be some kind of required or prescription required online patient training?   Elizabeth Gasser  7:49 Yeah, happy to and this this kind of ties to the conversation we were just having about, you know, being a software company, right? The introduction of this feature will be straightforward software updates. And so what does that mean? In practical terms, that means updating the iOS or Android Android application to the newest version, which will have the Mobile bolus capability. And at the same time, making sure you do a pump software update so that both sides of that dialogue can happen. And as part of the pumps software update, which happens through the Tandem device updater. There will be some online training, music click through to make sure that they understand the capabilities that we're introducing. And many of our users will be familiar with how you do that.   Stacey Simms  8:33 Would there be a prescription needed for that kind of feature? A   Elizabeth Gasser  8:36 Mobile bonus? Yeah, no,   Stacey Simms  8:39 this may be a silly question. But can you share any details of what Mobile bolus actually means? In other words, I visioned this as Benny will take the his phone out and have full functionality controlling the pump from the phone. Is that accurate?   Elizabeth Gasser  8:53 Yes or no, in that the primary goal of Mobile bolus is to allow for the delivery of a bolus from the phone. So in that sense, you're absolutely right, it will become for most of the day, the app will be the vehicle through which you can interact with the pump the piece, it won't do his full control of the pump. Meaning when you need to go in and look at changing settings, for example, that's not going to be in the Mobile bolus release. That's something that you don't have to do all the time, and can reasonably be done by taking the pump out and using the user interface on the device. As we get to the movie launch. Obviously, that will not have a screen. And so those control features, what we call full control will migrate into the app as well, for the movie pump.   Stacey Simms  9:46 Of course, yes, that makes perfect sense. I'm not going to let myself get too far ahead because boy do I want to ask you about but to just stay on on Mobile bolus for one one or two more questions, but with Mobile bolus are there other There are features that will be on the phone, obviously, it   Elizabeth Gasser  10:03 will marry with the app that currently exists today, right. And so that that is predominantly today, a secondary display tool allows you to see all of the things that are going on with the pump allows you to see blood glucose readings allows you to see insulin on board allows you to see the insulin delivery that you've conducted through the day. And so all of those features will remain. And the focus here really is on augmenting it with the ability to deliver a bolus from the phone. And so that sort of feels like it downplays. No. But it's incredibly, it's an incredibly exciting augmentation, and one that we think is an incredibly important first step towards that for control. Because it is the hardest use case, we have to get that absolutely right.   Stacey Simms  10:49 Will that have share and follow? Is that something that you're working on for down the line? Or is that something that may come sooner? So really   Elizabeth Gasser  10:56 good question. And we do recognize that share follow is incredibly important to our users and their families. Were continuing to look at where explicit share and follow capabilities for on our roadmap and what the best path to implementing that is, in large part because there's a diversity of CGM follow options out there, including our own Sugarmate application, which which can be used for blood glucose monitoring in a follow capacity. And so we don't have roadmap dates to share at this point in time, just know that we're sensitive to figuring out what the best possible implementation is for our customers here. And we want to make sure we're getting as much experience as we can, in the meantime, really understanding how to do good follow. And as I say, we're getting some of that through the Sugarmate app that we're operating, which actually just went live with the Dexcom real time API, right. And so there's a little complexity to thinking through what the best implementation model is. We're working on it and watch this space.   Stacey Simms  12:00 Well, since you brought up Sugarmate, I have to ask with Sugarmate, which is if it's not clear, Tandem owns as you said, many people don't realize that is sugar beet, something that people could use, kind of as a bit of a workaround for a Tandem share and follow or Sugarmate only displays Dexcom data right now.   Elizabeth Gasser  12:18 So today, sugar is explicitly a CGM companion application. It displays data from the Dexcom CGM. Over time we're looking at what features need to be added to that to ensure it delivers the best value proposition to our users. Really interesting   Stacey Simms  12:33 stuff. All right, you segwayed beautifully into my question about Dexcom. How soon after Dexcom G7 is FDA approved, do anticipate it being available on the x two and again, is that a simple software update?   Right back to our conversation, but first Diabetes Connections is brought to you by Dexcom. just about to talk about there. And one of the most common questions I get is about helping children become more independent. You know, those transitional times are very tricky elementary school to middle school middle to high school you get but I'm talking about using the Dexcom has made a big difference. For us. It is not all about sharing follow. I mean, that is very helpful. But think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four to five finger sticks at school, or for a second grader to show their care team the number before Jim at one point, but he was up to 10 finger sticks a day and sometimes more and not having to do that makes his management a lot easier for him. It's also a lot easier to spot the trends and use the technology to give your kids more independence. Find out more at diabetes connections.com and click on the Dexcom logo. And now back to Liz I just asked about tandems planned integration of Dexcom G7 when it is approved and released.   Elizabeth Gasser  13:53 We are intending to implement Dexcom G7 With both pump models so that means X2 and that means Mobi, down the road, our current goal, and this remains our goal is to deliver that within a quarter of FDA approval of the G7. And in terms of how they gets rolled out. I mean, it's very consistent with the software conversation we were just having right. The beauty of the software model is you know, as that gets approved, and as the implementation is ready, we'll be making it available to customers through a simple software update.   Stacey Simms  14:26 Let's move on and talk about the December R&D presentation where this large plan, I think very ambitious and exciting was laid out for the next five years. And we've already mentioned a couple of the products. We're going to go through it in some more detail, but I am curious kind of, you know just what it was like that day and if you didn't see it or hear it, I can link up the video. I'm assuming that it's still up there. But I guess I'm asking this is what were you all talking about that day? There were so many people involved in the presentation, kind of doing handoffs and saying, here's the product, here's the software, here's the philosophy, it had to be a big deal. Tandem had to be a lot of relief when all the technology worked. And everybody got their presentations through with it. You were done.   Elizabeth Gasser  15:07 Oh, absolutely. I couldn't agree more with that sense of it was momentous. And certainly at the end of it, we're all pretty tired. But no, it was, it was exhilarating, too. And I think, you know, we spend a lot of time because of because we're in a regulated space, we spend a lot of time talking day to day about the here and now the stuff that's approved, the stuff that's in market, and the reality is a lot of what we shared R&D day we've been working on for a while now. And you know, some of it's been skunkworks. Some of it's been more formal programs, you know, you just ticking along. And it was really exciting to have a vehicle to share a lot of that thinking and a lot of that innovation that we get to see day in day out. But we don't always get to tell the world about because of the rules and regulations in our space.   Stacey Simms  15:59 Alright, let's talk about it as much as we can. You've mentioned Mobi several times, this had been referred to and I had been told this was not gonna be the name. So we didn't know that. But this had been formally referred to as T-Sport. Now, it is Tandem Mobi. Can you go through the features? Can you go through what this product is?   Elizabeth Gasser  16:19 Absolutely. Where to start? First at it. It's the world's smallest durable pump. So if you're familiar with with the X2, it's half the size, that's really small, durable, four year lifespan hardware. So that in and of itself is exciting. In terms of where we go with the software on top of Mobi, it's going to support Control IQ. So same great algorithm that's in market today, it will be deployed on on both pumps in the same way. And so we get to bring that algorithm across the entire portfolio when Mobi launches, it will be controlled by phone as we were talking about earlier. And that means full control at this point in time, obviously, because there's no screen on the device itself. So what does that mean? Everything you need to do to interact with the pump settings, whether it's bolusing, whether it's looking at your statistics throughout the day, that will come from the phone, it will be charged inductively, which that you know, not something you don't really focus on. But that's that's pretty cool. With we're getting used to wireless charging for all of our consumer electronics devices not having to hunt around for a cord to plug it in. That's what we're doing with with Mobi as well. It'll sit on a little charging station, very easy, very straightforward, less pieces to worry about on pump bolus button. And this one we think is a little differentiated. Certainly in the on body arena, I think it will be the only one only pump out there of this size that has the option to fall back to a button push on the pump just to make sure because obviously, when you are interacting with your pump solely through a phone, we need to build in some measure of failsafe fallback, right if you find himself without the phone, and needs to bolus. And then lastly, waterproof. We're going to support waterproof capabilities through IPX8, which I think is pretty competitive. So lots of stuff packed into a really, really tiny device.   Stacey Simms  18:25 I'm sorry, what is IPX? Eight mean?   Elizabeth Gasser  18:28 The best way to articulate it, it's really just the standards we comply with and IPX eight means fully waterproof, you'll be able to swim and shower with it.   Stacey Simms  18:36 One question about Mobi is I'm trying to visualize how it connects. My understanding is that it uses the standard pumping fusion set that like my son's Tslim currently uses, is that correct? It just sits closer to the body.   Elizabeth Gasser  18:51 That is correct. The Mobi pump will work with the Tandem portfolio of infusion sets. And with the Mobi pump launch, we will also be introducing a shorter infusion set that four or five inches long, that allows for greater diversity of wear options.   Stacey Simms  19:09 I'm so fascinated to see how this works because I'm a very visual person. So he could put it on like my son could put it on his arm and it kind of dangles off. Does it also stick to the body in a way? Or does it just kind of hang there on the tubing, the tiny tubing   Elizabeth Gasser  19:24 work, we're working on the accessories to allow for a diversity of wear options, whether the belt clips or sleeves or a body worn adhesive patch through which you can that you can pop the pump into. So there's a variety of places you can push   Stacey Simms  19:39 it interesting, alright. And like I said, I will link up so you can you can really dial down if you want to and see all of the features of everything we're going to talk about. But just for time limitations, we're not able to go through every single thing. Let's move on to the T slim x three that seemed to be next in the pipeline. What is that?   Elizabeth Gasser  19:55 x three. That's the next iteration for the T slim X To pump. And really the focus there is to continue really honing the capabilities of the T slim form factor, right. And so we recognize that over time t slim continues to play a role in the portfolio, many of our users will continue to want a pump with a built in user interface. And so really the x three programs emphasis is on further developing the processor capabilities of that device, looking at battery life, looking at durability, reliability, looking at wireless software update capabilities, really to make sure that the T slim x two kind of line has continued vibrancy as part of the portfolio over time. And we're making the appropriate investments to support the diversity of software and user interfaces that we want to bring to the portfolio at large. So   Stacey Simms  20:54 right now, it sounds like the changes you're talking about aren't something that, you know, I would look at the pump and say that is significantly different, right? Or that works completely did you've changed at all, it's making small improvements and things that the user, frankly, may not notice? Or will they're, you know, things will just run better, like you said battery life, that sort of thing. Are there significant changes that you could think of that would be coming to the pump itself?   Elizabeth Gasser  21:16 Oh, no, that's absolutely right. I think this one's a little fun for me, because I come from the consumer electronics space, originally and spent 20 years you know, working on phones. And as you think about the types of releases, you do with consumer electronics, year to year, a lot of them are under the hood, that it's really focused on making it connect better, giving it more horsepower, making the battery last longer. And those things aren't always visible on the surface to a user, but may manifest through the quality of the user experience they get from interacting with that device.   Stacey Simms  21:50 The next product is Mobi tubeless. We've talked about what Mobi is, I'm assuming this means know to tell me a little bit about Mobile tubeless. This is   Elizabeth Gasser  22:01 a certain creativity and the naming convention there isn't so   Stacey Simms  22:06 we shouldn't laugh. It's a very big deal. It's a very big deal.   Elizabeth Gasser  22:09 No, I say that affectionately. And look, it's back to the conversation we were having on kind of the Mobi, shorter infusion set and different Bodywear options, more ways to air Mobi, right, we recognize that not everyone ultimately wants a pump with a tube. And so we've been pushing ourselves to say, okay, how can we improve the wearability and the wear option, so that we're reaching the broadest possible base of customers here. And, and this one's kind of an example of the things that we've had in the hopper for a while that not everyone gets to see, we took a little trip in the Wayback Machine and dusted off some of our earliest thinking on movie here. And maybe a tubeless infusion site option has been in our minds for a while. And so we felt it was the right time to bring that idea back to look at how to make it a reality as we get closer to the official launch of Mobi. And so this sits in the roadmap for Mobi as additional ways to utilize and engage with the product. And hopefully, it will give users choices, right? Some days, I don't want to wear my pump on my body, I might want to have it in my pocket and connect via a standard infusion site. Other days, I may be a little more active and find a really need to have a have a tubeless wear option, we get rid of the tube, the goal for us is to satisfy all of those use cases.   Stacey Simms  23:34 And then the last one is the completely disposable patch pump that's in the pipeline. Is this a different form factor than Mobi? Is it a different design? Or is it similar?   Elizabeth Gasser  23:44 So this is a different program? I can absolutely share that. I can't say a whole lot. This is one we want to keep fairly tight under wraps for competitive reasons. But the emphasis there is is very much on miniaturization. Got it. Can we really push the design envelope here on form factor for the device?   Stacey Simms  24:06 You know, it's so interesting. We've been in this community as a family for 15 years. So now you're certainly not as long as many other people but in that time, we've seen and heard a lot of products, right? We've heard about new things coming. We've seen some really great advancements, we see things go away. This is a very ambitious portfolio that we're looking at and five years is it doesn't seem like a long time really certainly as I get older, it seems less than less. Seems everything's going more and more quickly. But a lot can happen in five years is the is the plan here that all of these products will exist together. As you said, you know, the movie tubeless you kind of made it sound like I might be able to take out my Tandem movie with the longer tube and then switch to the tubeless another day is the idea that all of these would exist side by side.   Elizabeth Gasser  24:50 That's a great question, Stacey. I think the best way to answer that is to really reflect on the fact that we do fundamentally believe the day Diabetes space and particularly insulin dependent diabetes is a far more segmented market than every industry analysis would lead us to believe. You know, we often talk about type one and type two, as if those are the only segmentations that are relevant, we do actually think there's various needs, that we should appropriately be segmenting around, including, where preference form factor and user and interface size. And so as we look at the portfolio, we're really looking at how we can satisfy the broadest array of user needs. That may mean there is on occasion, some overlap in functionality between different products that sit in the mix. But the goal is really to provide the right device for the right group at the right time. And so as we think about where we go from here, the roadmap as we have sketched it out, for the 22 to 27 period really is very much about a tube pump offering with a screen, that's Tslim X2, a smaller form factor, more discreet phone operated screen, this option in the form of Mobi and there, the goal really is to create as diverse an array of wear options as we can to satisfy the needs of different user groups and their day to day activities, and then pass that as you think about the idea of a passionate disposable patch that exists as a third category that overtime will, we'll have to see how these different offerings play out with the segments that they're serving, and they are likely to coexist.   Stacey Simms  26:39 So interesting. As we begin to kind of wrap this up, I did have a couple of questions from listeners I wanted to get to, and one of them was about control IQ, frankly, and any changes coming. In other words, we had heard a lot about changing the adjustable, changing the target rates lower than 160 and 180, that they are right now not the target rates. That's when the pump takes action, that kind of thing. And I remember hearing that there was something in front of the FDA, I don't know how much you can share. But can you talk to us about changes coming to control like you, yeah, happy to   Elizabeth Gasser  27:09 talk about the design goals. In terms of control IQ today, it's delivering great outcomes. And in its current instantiation, I think one of the things that's helpful to understand about algorithms is that they're all going to work in different ways. It's like chocolate chip cookie recipes. If you think about it, lots of people have them, but it's how you put the pieces together and in what order and it's the secret sauce that affects how it tastes. Similarly, with algorithms, a lot of it comes down to how you put it together. And it's not always practical to compare from one to another. The real test is, you know, are you getting users to where they need to be in terms of, you know, being able to achieve their time and range goals, for example. So I think it's worth wrapping your head around that idea upfront. Now, having said that, for the control IQ roadmap, our next development frontier really is very much around personalization, and usability. While we're not going to get into very specific, you know, roadmap feature intersections at this time, we're exploring quite a bit here. And Jordan alluded to this a little bit in our R&D Day discussion, part of personalization for us does include exploring lower target ranges, and personalized target ranges, and looking at what it would take to deliver on those capabilities.   Stacey Simms  28:32 Here's a real speculative question that I don't expect you to answer. I'm hearing in the DIY space, that more and more people are coming up with algorithms that don't need meal announcements, or don't even need meal boluses. Is that something that Tandem is working on for an algorithm? Or I guess the real personal question is, could you please Liz, help me because my son forgets to bolus for many meals. He's 17. He's very independent. But oh my gosh, when I see people working on things like that, I just feel like that would be life changing.   Elizabeth Gasser  29:05 Yeah, mail handling unannounced meals on lounge consumption. Yeah, it's the hardest thing to confirm it with the algorithm here. It is fair to say that as part of our ongoing roadmap explorations, we are looking at what it means to improve unannounced meal handling.   Stacey Simms  29:24 I'll take it. I'll take it. Thank you. Another question came up about new infusion sets. And you had mentioned this, you touched on this briefly, but we talked to folks at ConvaTec who make many of the infusion sets and they were talking about longer life improvements to the cannulas or those sorts of things coming to Tandem. Yeah, so we   Elizabeth Gasser  29:46 did talk a little bit about our goals here. During R&D day. You know, it is only one piece of the system but we do recognize infusion set issues can be a real pain point for customers and so we have programs IPs that are ongoing. Some of them are internal driven by us. Some of them are in conjunction with our partners working on a diversity of things. Some of it is extended wear time, which we know is important. But we're also looking at insertion, ease and usability there, we're looking at how to reduce infusion site failures, specifically around occlusions, obviously continuing to look at things like adhesives, reduction of material waste. And so this one, it's a pretty diverse view that we're taking. It's not all necessarily anchored solely in the idea of extended wear, I can't give you any specific breaking news in terms of you know, what we're coming up with and the products we'd like to bring to market. But this one we're paying serious attention to, we recognize that our customers want to see progression here.   Stacey Simms  30:57 Yeah, I have been amazed since day one of pumping, I feel like the infusion sets have, at least for us, and everybody is different. And everybody's skin is different. Everybody's insertion technique is different, which is part of the problem. But you know, I've just been amazed to me, that has always been the weakest link of pumping. And the idea that I'm using pretty much the exact same infusion set that I put on my son's body 15 years ago, just with all the advances that we've had to me, that's the one that needs much more attention. So I'm really, really glad to hear you're working on that. Alright, so this is not a question. But this was a thought that ran through many of the comments. Many people wanted to say, thank you for getting this is terrible. Thank you for getting control IQ through the FDA before COVID. Because oh my gosh, nothing has happened since like, this was approved, what December of 2019. And many people started getting it I think the earliest was January of 2020. And the diabetes community it feels like very little, although there have been there have been approvals. But it feels like everything is moving so slowly now. So I'm sure Tandem is happy about that. But I know the community as well. So I'm not sure if I can even ask you to answer. There's no question there. But thank you.   Elizabeth Gasser  32:05 Oh, I'm not sure there's any good answers there either. Stacey, I certainly applaud the the yeoman's work going on at the FDA to manage through this crisis. And certainly while it's frustrating to have extended approval cycles, and yes, in retrospect, a blessing that we secured approval prior to COVID. I can't do anything but feel respect, admiration and a little bit of sympathy for our friends at the FDA. Yeah. And   Stacey Simms  32:35 again, I don't know if you can answer something like this. Have you heard that they are they're kind of making their way through it just seems like there was such a log jam, I understandably so any feeling any word that they are kind of clearing the deck, so   Elizabeth Gasser  32:47 to speak? I don't think it's my place to comment on my workflow there. I   Unknown Speaker  32:50 tried. You can we do have good   Elizabeth Gasser  32:52 back and forth with the FDA, you communicate with them regularly. And so they continue to engage with the industry constructively, productively.   Stacey Simms  33:02 Alright, before I let you go, you don't live with diabetes, as you said at the very beginning, you know, you come from a software background and that sort of thing. But what is it like to come from that and work in in diabetes, where the work that you do I mean, here I am complaining about infusion sets, and, you know, change the bolus, from what you know, before it reaches 180? You know, we're talking about all of these little things add up to such quality of life issues for people, you know, what does it been like for you to work in this space?   Elizabeth Gasser  33:28 That's a great question. It's one that I think you're the first person to ask me to reflect on. You know, I think it is both sobering and invigorating, sobering because, you know, when you come from a world that's, you know, focusing on clicks and engagement and eyeballs, and consumption of media, you can get lost in the little things, and really stepping back and recognizing just the enormity of what type 1 diabetes is, and the burden it places on people's lives, day to day, and feeling like I can show up to work and even in a little way, help with that. That's sobering and profoundly rewarding. It's also invigorating, because, you know, coming from a consumer electronics environment, you see what's possible with the technology as it exists today, and many of those technologies have not yet come to medical devices in a very fulsome way. And so I certainly get out of bed day in day out wondering how we can help therapy benefit from all of the innovation that is going on, in the consumer electronics world, right. You know, we have thermostats that manage our home temperature for us. We have self driving cars we have on demand consumption services that you know, help us get our groceries and plan our meals. I don't mean to trivialize the differences that are involved in translate I think that to medical devices, but I also think as you look at that and say, Come on, we should demand that level of ease of use in what we're doing here as well. And so that that's profoundly motivating.   Stacey Simms  35:13 That's great. Well, thank you so much for sharing so much information for answering what you could answer. And I hope we talk again soon. My pleasure.   Elizabeth Gasser  35:21 Thank you, Stacey.   Stacey Simms  35:27 You're listening to Diabetes Connections with Stacey Simms more information at diabetes connections.com, including the link to the research and development presentation. If you'd like to watch that or just listen to it, I will link that up over on the website along with the transcription. I really appreciate your patience with the transcriptions. I think we do a great job. But my transcription software doesn't speak diabetes, I try to teach it but it is a little unreliable. That way we go through and try to catch the big stuff. But if you do see anything egregious, or very confusing, please let me know. And I can pretty easily fix that. I want to take a moment and address a couple of the questions that we ran out of time with Tandem or your questions came in late. I'm going to do that in just a moment. But first, I mentioned at the beginning of the show that I had a question for healthcare providers, I have a question for you, I have a favor to ask of you. You may have heard me talk about Club 1921. I mentioned it right at the beginning of the show, I'm only talking about if you're at the end of some of the podcast episodes, and in the Facebook group, we are in beta. It is my new project. It's all about events in the diabetes community nationwide, any type of diabetes anywhere in the United States. I need your help, because it's very easy for me to find the big events, right friends for life, JDRF, even ADA stuff online. What I would like to add to the website, and what I think will be vital to its success are all of the events going on in your hospitals. Almost every hospital has a nutrition program for people with type two, an education program for gestational diabetes, things like that. They can be virtual, they can be in person, but I need to find those programs, I need to get into those hospitals, I need to reach the people who want to add those events. This is not a community calendar, where I hope a couple of groups post their events. And we all go from there. I want this to grow into a site where 1000s of people with diabetes, any type of diabetes, find their community find help find what's being offered. And I know that these hospitals want to connect with these folks. So if you could help me do that point me in the right directions to meet with the association's it doesn't have to be one on one with hospital systems, although that would be great, too. But whatever you think might be a help, I would really appreciate it, you can email me Stacey at diabetes connections.com, you can message me on social media, thank you so much, because this will only succeed if we reach out beyond the community that we are already talking to. So thanks. Okay, let's get to the kind of leftover questions from Tandem, the most common one had to do with international rollout. And I unfortunately, I don't really have any good answers for you. I'll tell you what Tandem said I asked specifically about Australia, I had two people who emailed me asking about what is going on in Australia with the rollout of Control, IQ, nevermind all these other features. And they just said we do not have an update at this time. And then asking about other international markets. So let me read that response in full Tandem says we have launched in a large majority of the international markets, and we're near to medium term focuses on ensuring we work to make our technology broadly available to these customers. We don't have anything to disclose with regard to additional markets at this time. So I know not the answer you were hoping for. I will keep asking on this one. And I do apologize, we are a very US centric podcast because I am US centric. But I appreciate the reminder. And I will try to keep that focused and you know on my list of questions as we move forward with lots of different technology this year. And then I had also asked them about changes to the current controller queue algorithm. I had asked during the interview if it could take action at a lower number than 160, which is where it jumps up to basil and 180 where it gives an auto bolus at 60% of the bolus rate that the person programs in and Liz did answer that question in the abstract, but I wish I had pushed on it. So I followed up because I thought I had heard that Tandem had already submitted a change on that to the FDA. They responded quote, as Liz mentioned in the interview, we are working on personalization features which include lower targets and thresholds. We've begun to engage the FDA and started our design work, but we're not currently providing any of the feature details and quote, I will add this editorial comment. Every pump company I talked to has started out saying we're going to have lower ranges, we're going to have tighter ranges, we're going to have customizable ranges and every time it hits the FDA that kind of starts to change set You know, Omnipod, if you'll go back and listen to the interviews from two or three years ago, they were going to submit with I think it was 80 to 100 as one of their ranges. And that didn't happen they've submitted with higher ranges, just like Tandem did. I think, again, this is my speculation, I think these will all gradually come down. But if you are looking now for tighter control with these hybrid closed loops, you might want to go the DIY route. Although if you keep your pump in sleep mode, you know you're sleeping beauties with Tandem it's trying to keep you at like one 12.5 The whole time you just have to remember to bolus which works beautifully for some people, and not at all for the person in my house.   Okay, before I let you go quick look ahead. Of course in the news is every Wednesday we do that live on Facebook, and YouTube and I added LinkedIn this week. My goodness, we're also live on Instagram a little bit later, still can't do all of that at once we're working on it. And then I turned that into an audio podcast episode that is released on Fridays, upcoming longer format shows we'll cover more technology including a new pump called Sigi. We've also got some really interesting community interviews. What is it like right now when you live with type one, but you also live with another autoimmune condition that makes it very difficult to get a COVID vaccine. And I'm going to be talking to some of the Joslin medalists who are this is a theme right living longer with type one and the issues that have cropped up for them that nobody really far, we would have to think about so I'm excited about that and so much more. Thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon until then, be kind to yourself.   Benny  41:48 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged    

This week, Dexcom CEO Kevin Sayer spoke to the JP Morgan Healthcare Conference about the G7 and beyond. We talk about information from that presentation and get to as many of your questions as time allows. This interview took place on Tuesday Jan 11 and much of what we discussed isn't FDA approved. Dexcom presentation info here Club1921 info here  Our usual disclaimer: Dexcom is a sponsor of this podcast, but they don't dictate content and they don't tell me what to ask their executives. Recent Dexcom episodes: CTO Jake Leach talks about Garmin, Dexcom One & more CEO Kevin Sayer talks about G7, Direct to Watch, Adhesive and more CEO Kevin Sayer talks about Dexcom in Hospital, G7, VA program and more Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Episode Transcription Below  Stacey Simms 0:00 Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921. Where Diabetes Connections are made This is Diabetes Connections with Stacey Simms. Welcome to another week of the show. You know I'm always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. And I'm talking with Dexcom CEO this week, it's Kevin Sayer, he is back to check in with us again. And in the interest of getting this episode out to you as soon as I could. It might sound a little different right here at the beginning. But Dexcom episodes are always so high interest that it really merits a quick turnaround. I didn't want to sit on this interview for a week. So here's the setup. Dexcom CEO Kevin Sayer gave a presentation to the JP Morgan healthcare conference, if you're listening as this episode goes live, that was just Monday of this week, January 10, the interview you're about to hear took place on Tuesday, January 11. My usual disclaimer Dexcom is a sponsor of this podcast, but they don't dictate content and they don't tell me what to ask their executives. I asked the Diabetes Connections podcast Facebook group for questions. And Whoa, boy, did you have a lot as always not a surprise. And I really appreciate you sending those in, I got to as many as I could, while also trying to include what the folks at Dexcom had really asked me to bring up there are some topics that they wanted Kevin to make sure to address. And I think we do a pretty good job of trying to reach a balance here. Kevin, welcome and Happy New Year, Kevin Sayer 1:46 and Happy New Year to you. Stacey Simms 1:48 Thank you. Well, this seems to have started out in pretty happy way on the headline, just from this week. Dexcom CEO touts unprecedented performance of G7 in clinical trial. This is after your talk at the annual JP Morgan healthcare conference. Tell me a little bit about that unprecedented performance data. Kevin Sayer 2:08 I'm happy to. And I just have to qualify it by saying no, I can't send it to all your listeners at the end of the call yet. We're still waiting for approval in Europe. And we have filed this with the FDA, I'm going to take you back a little bit, we made a decision when we were going through the G7 development process that we wanted to answer that performed better than G6. And all of our scientists looked at us and they go oh, really, you're sure because this is really good. And so we spent a lot of time new algorithms and new manufacturing techniques, there's a lot of things in G7 that make it different. We also wanted to validate that performance with a study that was so large, nobody could refute it. So as you look at the data that I presented at the conference yesterday, over 300 patients 39,000 Match pairs all across since one ranges and on the I CGM standard side, but with the 5% 95% lower bound, and even the absolute points, you can see we are well within all of the iCGM standards, which are very technical and actually are a very good measure of how a sensor actually performs in reality. And they were very thoughtful in developing these standards to try and pick the centers that don't work to put you statistically in a bind to whereby if you really aren't performing in the low range or wherever, you're not going to get that iCGM designation. We're very comfortably there. And the overall MARD in the study, Stacey is eight point, you know I it's in the low eight for adults and pediatrics. And if you start looking at the data, we gather the data sets in three periods, you know, days one and two, the middle days, four, or five and six, and the last days nine and 10. It's pretty low, I think it's below 10. In the first group a day, the first days, which are always a little bit higher, traditionally in our centers than the other days. But in those middle and end days, it's it's near seven, and strips for six. I mean, we have done something that I've been in this business for since 1994. I didn't think we'd ever do this when I started. As far as being this good. This is really, really good data. And we're going to continue to deliver the experience to our customers that they demand from us. So as you can as you think about an iCGM that's driving an automated insulin delivery system. And not only is the performance great, the user where it's 60% smaller, it's a 30 minute warm up. It's a new app. From our perspective, we've got a lot of the clarity data, your listeners will know about clarity. We've got a lot of your clarity data right on the app. There's new alarm configurations. Stacey Simms 4:48 I'm gonna just jump in with a couple of quick clarifications before we go on. You mentioned a number of there that went by quickly I apologize when you talked about the 300 people in this trial 39,000 match what I missed that one Kevin Sayer 5:00 matched pairs. That's where you compare the CGM value to the blood glucose value from the laboratory instrument. So the way our studies work is literally we draw blood samples from the individuals in the study at intervals, and then we actually match the CGM data to that laboratory blood instrument. So 39,000 points from these 300 people in this study were matched. Got it? Stacey Simms 5:27 And you mentioned the MARD mean absolute relative difference. Most of you, as you listen are very familiar with this, the lower the better for CGM G6, I, my understanding was G6 was in the low nines. This is 8.1 for peds. 8.2 for adults, as I'm reading it, that's right. I know you can't tell me I'll ask you anyway, why? What made the difference here? Is it sighs is it algorithm? Do you have anything you can point to? Or is that a trade secret Kevin Sayer 5:49 it's combination, I think the algorithm has been the most, the algorithm changes were really extensive here. And, you know, we always have manufacturing processes to get better, the way we build the G7 centers different in every step of the way. Literally, our G6 manufacturing processes go away and the G7 ones take over the summer, we're a little similar on the actual sensor wire itself, and that manufacturing, but everything else is different. We just think it it's smaller, it's a lot shorter than G6 was. And so it is it's going to be a completely different experience for everybody. Stacey Simms 6:28 So to go back to what you were talking about, before I jumped in there, you were starting to talk about alarms, is there something different for the alarm, Kevin Sayer 6:35 the app is different. And so access to them, and, and just how you use them, if we try to get to be more consumer, thoughtful, as we configured the alarms, we'll see how everybody loves him. It'll be interesting. The alarms are one of the things we get the most comments on when we launch a product initially, we try and please everyone, but we never please everyone. And then you get you know, the agency at one time. I don't know if your call. I think one of our other discussions, we had to make the mute override not work on the low end. Boy, we got a lot of people mad at us about that one. So we've tried to comply with what our users want, and also comply with what the FDA has asked us to do. But I think users will find the alarm experience. Good as well. I like I think it's just gonna be a home run. Yeah, well, I Stacey Simms 7:24 mean, my son would be happy if an alarm never made a noise again. And I know other people who put like it to alarm every time there's any movement. So I hear where you're coming from, can you give any insight into the G7 app in terms of what the differences that we may see as users? And I guess especially one of the questions I always get is about follow any changes of significance coming that you can share follows Kevin Sayer 7:47 on a separate software track. And so the G7 system, the app is just we tried to get more data in the app itself, versus what we have with G6. So a lot of the clarity data, or at least summary query data is sitting there right in your app. And that will be i we think people will like that just to see how they're doing over time you got your time in range data for, you know, three 714, you know, a month, 90 days, see how you're doing time in range wise and the app is other than that it's relatively similar. The startup is different and you know, in the interface is going to be different. I think over time, what you'll see with us is that app is now going to get more sophisticated, we changed the entire software platform for G7 and started over again, and we developed a software platform, we can now really change and add on to a lot easier than we could in the past. And so we're hoping to have more frequent software releases. But we've also learned that CGM is not like Battlestar Galactica game, a game where you want to get a new release every two weeks to fire everybody up. We can't do a release every two weeks, because people depend on this for their, you know, for their lives. And if you do too frequent releases, and you botch a release, you do some wrong, you remember what happened, if we ever make a mistake on the software, the data side, we can't do that. But we do want to add more features more quickly in this platform will enable us to do that. I think one of the things you'll see going forward on the software side, we really want to automate a lot of the tech support features. We've added some, you know, you can get FAQs right from the app now with respect to your sensor, but there are other things we think we can do tech support wise in the app that will you know, reduce everybody's burden. Nobody likes making a phone call and nobody likes picking up the phone. And when we have a sensor fail, and we do have sensors fail, it just doesn't make any sense that you have to call us if we've got data on a phone, it'd be much easier. For example, if we could diagnose that failure right on the app and go through a very quick process to why but where you could get one. I can't give a timeframe when all those things are going to come but the platform is robust enough that over time, we can add features like that. One of the other nice things about G7, since it's fully disposable, you know, every sensor has its own unique serial number. Whereas with G6, that same transmitters used with three months' worth of sensors. So it will be, it will be fun to be able to follow things like that and see how the sensors go through the channel where everybody gets attract things of that nature. So what we're really looking forward to the change in our business that G7 affords us. Stacey Simms 10:28 As usual, I have listener questions, I'm going to try to not repeat because you've been really accessible in the last year, we've talked to a couple of folks from Dexcom, besides yourself. So as you listen, if I didn't get to your question, or if you have a question, good chance, we actually answered it in the last year, year and a half. But given let me ask you about compression lows, because that's one of the things we had talked about, about testing the G7. Any update on that in these trials, if you lay on it, you know, circulation slows, and you can get a false reading any better with the G7 Kevin Sayer 10:54 part of the clinical study is in the compression, because you're pretty much sitting in a chair with a needle in your arm drawing blood. So I'm sorry, we can't really test that we'll learn more about compression when it gets in the field. My hope is that it isn't as much but I can't promise that because I don't know, we're not enough people. I think there are ways over time where we can manage compression better, I'm not going to get into all the science on the phone, believe it or not, I do spend a lot of time with the engineers on this specific issue. Because I have it happened to me from time to time too. So I will call them up say Hey, can we do X, Y or Z? And I think there are some some answers, but I can't give them away because I don't want to give away the playbook. So let's let's just see what we can do overtime on that one. Stacey Simms 11:42 Okay. All right. But you know, the next clinical trial just have them lean against the side of their bed. Kevin Sayer 11:46 We will we'll have to do well. Diffic very scientific. Stacey Simms 11:50 Another question came up, and I think I'm gonna knock wood. I think we've been very lucky on this. It's about new iOS launches from Apple. And I'll read the question and it'll tell you, briefly our experience. This person said Dexcom is part of the Apple Developer Network developers have access to new release such as iOS months before launch, why does Dexcom lag behind Apple iOS launches by months in terms of quote, approved use. And our experience, frankly, is that we have not had any issues Benny and I both have, we just got but as a 13. Plus, we both had very old phones. And we have a latest software and no glitches for us. But that's not everyone's experience, can you talk a little bit about that, Kevin Sayer 12:30 we do get the iOS versions in advance, and we do our best to comply with them, I would I would tell you that it isn't as simple as it's made out to be. And the iOS version that's launched isn't always exactly what we've worked on as they as they make tweaks, not big ones. But you also test for everything that you know about the new iOS versions, and sometimes are things that you don't know, that are in there that come back and may affect the app later on, which is why we delay a little bit, we try and go through every bit of testing that you can imagine. And I'll be honest with your users, Apple's made iOS changes, because of us, we have called up and said, Look, you got to do XY and Z here we have a problem. And they're very good to work with, they've not been difficult at all, you know, when you think about iOS and Android operating system and all the things that they impact. And it's very hard not to impact somebody adversely when you do a new iOS launch. And you know, the perfect example with us is the home you'd override journey that I brought up earlier. In the beginning, I believe the only app that can overcome the mute override within iOS is authorized manna in the beginning was Apple's alarm clock, but other people would go around it with their apps was a medical device, we can't do a go around, we have to make sure what we do is in compliance and known so they work with us very well to make sure we could do what the FDA wanted with respect to the mute button. And the same thing with Android on that, and that was a very difficult exercise. So if there's a delay, it's because we're taking time to see what might have been put into iOS that would change our app. And it just one more thing that will stop. new operating systems are often designed to minimize power usage to extend battery life. Oftentimes, minimizing power usage affects an app that has to be running continuously. And those are the types of battles that we fight are things that we have to make sure we test as a new iOS minimizes power usage. Just does that turn us off? Does it does that stop Dexcom? And we've had, we've discovered things of that nature where it could affect our app. So there you go. Long answers. All right. Stacey Simms 14:44 No, no, that's great. And you mentioned you've asked iOS you've asked Apple to make changes. I assume the alarm was one any others that you can share. Kevin Sayer 14:52 I know that nothing I could share. Nothing major that I like you said they're very cognizant of the Dexcom community there we are. You know, we're we're a very large part of the iOS, you know, we're pretty, it's pretty vocal group when it comes to iOS, Stacey Simms 15:06 pretty vocal group period, the whole community. Alright, we say that with love. So another question came from my group, which was about Sugarmate. This is a, I would describe it as a third party app that uses the Dexcom information. And now the real time API to display and and act on data in its own way, my understanding is that Tandem owns Sugarmate, just from way of background here. And you know, Dexcom owns a little bit of Tandem. So there's a relationship there. Can you speak a little bit about data sources, but the bottom line question here was using Sugarmate and the situation to ask you, does Dexcom feel like they own the patient data? Or do the patients still own their data, even when going through the Dexcom web API's, we believe Kevin Sayer 15:49 the patient's own their data, not us, let me rephrase that we believe the patient's control the use of their data, we are the stewards of that data sitting on our servers. And so we have a responsibility to maintain it and to keep it but where that data goes and where that data is used. We do believe, particularly if it's identified data, that the patient absolutely has complete control over that there's vector sugar made, it's interesting, it was not using API's before it was a like many and non authorized use of the data to display it in a different format that people quite candidly, mess, like better than looking at the Dexcom app. And that's fine. That's why we built the live API's, we made a server change to upgrade our server platform, again, more capacity, more safety, more redundancy. It's a project that's been going on for years. And we've come to the end of that project this year. And when doing so there were some technical issues with Sugarmate, they very quickly switched over to the live API's. And now this is an authorized use of the data based on platform and data pipes that we built. So we're willing to share the data with people when they want it. I think that's an attitude of Dexcom. That changed very much over the years, when we first started, we had a hard time with that concept. Because we worked so hard to invent this technology and gather this data, why would we share it with anybody and say, See, you remember the early days and Nightscout, they were mad at us, we were mad at that. Now, we're not mad at anybody anymore. I think it's important that the data sharing be structured and be used for good purposes. But you know, all in all, it's a, it's a good use of the data that we have, because these are still Dexcom customers. If you want to, you're still buying sensors and using them. It's not a bad thing. Stacey Simms 17:35 Let me ask you a question about the sensors. And this came up in the fall. I've seen it less since but it's still out there. And I don't know if this is something you can answer. But it seems that we have not received this. But it seems that some customers are getting the G6 sensors, the inserters brand new in the original packaging, but a new label on it that says this product meets shelf-life extension requirements. I'm your people I reached out to them in the fall, they told me the stickers, oh, you know, it's all legit. There are updated expiration dates. But I'm curious why this is happening. And you know, what is the shelf life of the G6, Kevin Sayer 18:10 I can tell you exactly what's going on, you do shelf-life testing for product as selling your product will last. And over the course of our product lifecycle, you trying to extend that shelf life through more testing to make sure the product still works for the same amount of time period, if you manufactured product with 12 months shelf life, and then extend that shelf life to 18 months. And it's still the same product and still same manufacturing process rather than unbox it, put it in a new box or throw it away, we put a sticker on the outside because it's same products been tested, it's been proven that it works for 18 months, that's not a problem. That doesn't mean that it's 18 months old, we never have inventory that sits around that long to my knowledge, but we do extend shelf lives, it's important for us to do that, with respect to the distribution channel, particularly as we go to the pharmacy, you know, in the drugstore and and our distributors, the longer they have, you know that they can keep product, the better. We don't want people throwing product away if they don't have to. So all that means is we've extended our testing and shown that the product still works for a longer period of time and wanted to to label the product accordingly. That's all Stacey Simms 19:17 Yeah, I think because it came at a time when there is nervousness just in general not just in diabetes about supply chain and, you know, scarcity concerns. It just seemed unexpected, if that makes sense. Kevin Sayer 19:30 Well I one of the reasons to extend life is in fact supply chain we don't have inventory issues with G6 you know G6 is a very very well running process right now and still, you know, the premier sensor on the market. In fact, we launched a G6 derivation product in Europe, these past three months called Dexcom. One a it's a cash pay product sold on the E commerce platform in four European countries say See now and it's a lower price and geographies. But we did a feature that we took away, share and follow. We're not connecting any devices. It's it's a simpler technology. And again, we have d six supply to be able to go and do things like that. And we are planning to have G7 capacity to do similar things. We are not shooting small on either front will have capacity on both sides. And, you know, listeners on a supply chain perspective, we have been extremely diligent with respect to components for our products. And right now we see things very good today. We my operations team has just been outstanding on this front. So knock on wood, no, no Dexcom problems today. Stacey Simms 20:40 All right, two more questions for you. As always, we're going to run out of time. And as you're listening, I would refer you again, we did have a conversation about Dexcom. One in a previous show. So I will link that up. This one is more of I've asked this, you answered it, but I still continue to get questions to please ask you please make sure when GS seven comes out that Medicare is taken care of? Kevin Sayer 21:00 Well, that is a great question. And I think we've learned from our mistakes in the past. So we will when we get G7 done, what we will do is we will file with CMS to get G7 reimbursement. That's a process that I've heard anecdotally takes three to six months. So if we can get it done in three months, we can't file with CMS until it's approved. But we'll file after approval, and then we'll go and it is our plans to have capacity for all of our US users. When we go it is not that Medicare delay for G6 was one of the most emotionally gut-wrenching things I've dealt with here, because you can't imagine how many emails I got. But we didn't have capacity, and we didn't have everything ready. We've learned from our mistakes. And we'll hopefully be ready to go to everybody. That's our plan right now. Stacey Simms 21:49 That's great. Okay, and my last question is, and I hate doing this to you, but I'm doing it anyways, look into the chapter, we're gonna look, we're gonna come at it sideways, because I did have one listeners and ask him what's planned for the g8? And I said, Come on, let's let him get the G7. Oh, you know what? I'm happy? You can answer that. Let's go for it? Kevin Sayer 22:07 Well, well, I'll give you two because we did lose some time in the beginning because my computer wasn't functioning properly. As we look to the future, we want performance to continue to be better. And then we ask ourselves, but we're getting to the point where as you get to an eight, Mar D, we're getting close to finger six, I don't know how much more of a gap there's going to be, as we look to the future, and even G7 derivatives, we want to go to a longer life, we want to go to 15 days rather than 10. We'll be running studies doing that over the next couple of years. We've got a couple of plans there. We're always looking to upgrade the electronics, and how much better electronics, you know, I know one of your bigger user complaints is connectivity and loss of data, how do we improve that experience for our customers to make that better over time? Because we can always be better. And phones change faster than medical devices? So what why do we put there, we're looking at ways how we can help the environment for future product launches again, and changes in the next platforms, G6 has a lot more materials than G7 does as far as just raw plastic. So how do we make an impact there? On the cost side, there's some form factor things that are pretty far out there that we look at that I won't go into that are really, really fun. We'll see if we had done that. And if they're feasible from a cost of manufacturing perspective, but again, we're now very much focused on customer preference, rather than can't we make this work well enough, you know, in my early days here, it's Can we can we just get this thing working well enough to whereby people can rely on it. Whereas now it's one of those features that are going to make it a more engaging experience. And the last one will be software and analytics and things like that, as I look out over time, do we end up with analytics to whereby we can offer our users a menu of choices on the software side to whereby they can get more if you want Dexcom when don't want to connect or talk to anybody? You can have that if you want something that literally literally analyzes every glucose measurement that you take and does something scientifically. How do you get there, I think there's a number of experiences we can develop over time for future product generations without changing the form factor. So I don't see any slowdown in investment on the r&d side. And on the product side, G6 is the best product out there now and G7 will just be better in every way. And then we just keep going from there. Stacey Simms 24:27 And I appreciate you answering that. Thank you. So if you keep going from there, this is the sideways kind of question I wanted to ask. Okay, go ahead. Okay. A couple of days ago, Abbott announced the idea of what they're calling Lingo, which is bio wearables that will track not only glucose, but ketones and lactate and alcohol. And they say these are not medical devices. You know, this is for people who want to be you know, ultra-marathoners and things like that. We're already seeing sensors used in that way right now. Any plans to do something like this? Kevin Sayer 24:56 You know what our electronics platform for G7 We could put any, if we could develop a sensor wire with membranes and analytes and such for to measure something else, it would fit right into G7. And we design G7. With that in mind, we have advanced technology work going on with the other analytes. But it's still an advanced technology phase, we have to answer a couple of questions. First, have we done all we're supposed to do on the glucose side? Before we run there, and we got a lot to do right now, Stacy, you've heard me talk on this call. And so we need to get done what we started, we need to get G7 launched, we need to scale it up and manufacture it in the 10s. And ultimately, hundreds of millions of products as we stand up a factory in Malaysia and get our Arizona facility built out even more. So we've got to get that work done. The second piece, I'm going to answer this in three pieces. The second piece is what is the commercial opportunity for each of those things. They did announce this line of sensors, but they're all individual sensors. So I've worn a lactate sensor, I'll be completely honest with you from the lab and seeing what it does to my workouts and it's very cool, I can see which workout is better than another one. But I'm not ultra-marathoner, I probably wouldn't change my life. But it was very interesting to look at. There are other scientific uses of black data, particularly in a hospital setting. But what is the market for those, and so we're gonna kind of take an approach, we'll continue to develop the science and if Abbott wants to go develop a market, I am happy to follow this time rather than create it, like we've done with glucose. The third piece of this is there are a lot of biosensors out there. Now, you have your Apple Watch, and Apple is continuing to gather more and more data or ranks, whoop bands, Fitbits, they're advertised on television all the time, I would love to incorporate data from these other sensing technologies into into Dexcom. And vice versa, share our data with those people, particularly as you head down the health and wellness path. And let's get some other people's sensors into our platform. In all honesty, if Abbott's really good at sensing these other things, we'll take that data on our platform and analyze it to if they want to, I guarantee you, that probably isn't gonna, gonna happen. But we would, you know, let's be open about this. We're going to get our glucose work done to because we've not seen an opportunity that exceeds this. Stacey Simms 27:13 Got it? Excellent. Well, thank you so much for answering that it really is so interesting to watch and to see if, as you say, if any of this really, really makes a difference commercially, if people do want to adopt it widely. You know, I think the jury's still out, so we shall follow. Kevin Sayer 27:26 Hey, thanks for having me again. Stacey Simms 27:27 Thank you so much. Have a great day. You're listening to Diabetes Connections with Stacey Simms. More information at the episode homepage, diabetes, Dash connections.com. I'll have the transcription up as soon as I can. But again, quick turnaround on this episode. Thank you so much, again, for sending in the questions. Obviously, I didn't get to all of them. And if you're not in the Facebook group, that's generally where I asked for questions for this kind of thing. It's Diabetes Connections of the group. I'll link it up in the show notes. As always, I know not everybody's on Facebook, please feel free to always email me if you email me now about Dexcom. I'll save those questions until the next time we talk to them. It's Stacey at diabetes connections.com. Again, it's in the show notes and it's on the website. But I get it not everybody is on Facebook these days. To that point, at the very beginning of the show, in that little sponsor tease before things even begin, I mentioned club 1921. So let me tell you a little bit more might be an update for some of you. Maybe some of you are hearing about this for the very first time. Briefly, club 1921 is a website. It's a project I've been working on for a long time. And it is a place where anyone with any type of diabetes can find events anywhere in the United States. We are in beta right now. I invite you to go to the website club 1920 one.com. Until around, check it out. Let me know what you think we've immediately identified we went into beta, late last fall several things mostly about the signup that need to be fixed, those could be fixed by the time you log in, my guess is closer to the end of January. There's a little bit of confusion there. I'll explain in a moment. But other than that, it's pretty well set. The idea here is that instead of a Google Calendar or something like that, this would be a website where you go, you sign up, you tell us what kind of events you're looking for, and then you never have to come back, we'll email you automatically. When events that meet your criteria are edit, very easy. So you pick your type of diabetes, you pick your location, you pick which type of events you want, you pick your age, I mean, you can just say I want everything in every category you can kind of go through, but whatever you pick, and you can change those if you want to come back and change your filters, but whatever you pick, we will email you when those events are added. If you want to add events. There are two types of events you can add one we're very creatively calling events. This is your JDRF walk. This is your friends for life conference. This is your hospital education for people with type two. It's an event by an organization a was a staff an event where they expect lots of people or it's regularly scheduled, or there's a fee, that kind of thing. The other kind of events we're calling Hangouts. These are my favorite types of events. I love what we're calling Hangouts. This is your mom, coffee, your kid play date at a playground, you know, you're going out to a bar, post COVID, with your adult friends with type one, hang outs are not put on by an established organization. They're put on by people like you and me, we don't have a staff, we just want to meet people in our area. When you're adding those. That's where a lot of the confusion came up in the registration process. Because if you want to add events or Hangouts, you actually have to sign up in a different way. So I'm going to talk more about that as the weeks go on. We're fixing that part of the website. But if you try to sign up and you see some confusion, it may be because you are trying to add an event or a Hangout. If you want to just sign up to learn about the events and Hangouts, it should be pretty simple. But if it's not, if you have any questions, any suggestions, please let me know. Email me Stacey at diabetes connections.com. Pretty soon you'll email me Stacey at Club 1920 one.com You're going to be hearing a lot more about this because I'm so excited about it. Yes, I know, we might not have a lot of events this year, that's fine. We're going to have events, eventually, in the diabetes space. Again, we're gonna have lots of events, and social media, Facebook, even things like Eventbrite are a terrible way to get the word out about them. And it shouldn't be work to find them, you should be able to just raise your hand and say, I want to know about this stuff. And it should automatically come to you. And that's what I'm hoping to do here. Okay, back to our regular schedule with the podcast. We will have our Wednesday in the news that's live at 430. Eastern on Wednesday on YouTube and Facebook, and then 445 on Instagram. And then that turns into an audio podcast episode for Fridays. And hopefully next week, we're back to Tuesday and Friday. And we won't do any of this nonsense of pushing episodes around. But I do appreciate your patience. Again, I didn't want you to wait a week for this interview. All right, thank you as always to my editor, the very flexible and understanding John Bukenas from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself. Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

Diabetes on TV and in movies is rarely anything close to accurate. Turns out, those media misconceptions can be real-life harmful. This week, Stacey is joined by Dr. Heather Walker, the co-author of (Un)Doing Diabetes: Representation, Disability, Culture and Dr. Phyllisa Deroze, who contributed a chapter called “Laughing to Keep From Dying: Black Americans with Diabetes in Sitcoms and Comedies. Dr. Deroze & Dr. Walker both live with type 1 and both have difficult diagnosis stories that influenced their experiences with diabetes going forward. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. More about Dr. Phyllisa Deroze More about Dr. Heather Walker ---- Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription: Stacey Simms  0:00 Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, diabetes on TV and in the movies is rarely anything close to accurate. And those media misconceptions can be real life harmful. Here's one from the sitcom 30 Rock.   Dr. Phyllisa Deroze  0:30 Tracy has diabetes there. And he does this skit where he replaces his foot with a skate. And he's like I'm practicing for when I lose my foot to diabetes. And that is the thing. There was a diabetes diagnosis and the next scene, he's already imagining himself with an amputation.   Stacey Simms  0:49 That's Dr. Phyllisa Deroze, who wrote a chapter in a new book we're talking about this week. The book is called (Un)Doing Diabetes Representation, Disability Culture. And it's authored by Dr. Heather Walker, Dr. Deroze and Dr. Walker both live with type one, and they join me for a great conversation. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, I am always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. This is our first show of 2022. So Happy New Year, everybody. I hope you're doing okay. Still stressful days for everybody. But hopefully you can kind of come along with me every week, as we talk about what we're finding interesting in the diabetes community. And I say that because 2021, I decided I was going to focus on technology for the year, I was going to try to do as many episodes as I could, talking about new technology talking to these companies. And I did that although I gotta say the log jam at the FDA made that a little difficult, right? I mean, we thought we'd have a lot more new technology. And a lot of companies will not talk about stuff until it is FDA approved. So this year, I'm going to stay with that because the technology episodes are what you have told me you are the most interested in, in fingers crossed are going to have some approvals pretty soon. But I gotta tell you, I've also decided that I'm going to do shows on just whatever the heck I find interesting. I started this show seven years ago, this coming summer, and honestly, this might be the last year of it in this form. I mean, I love it. I love doing this but seven years is a long time for any project. I have some new things that I'm working on. I'm not sure how much time all of it is going to take. I'm not abandoning the podcast by any means. I want to hear from you too. As we go forward. You know, as the year goes by, I will keep the lines of communication open. We will figure it out together. This episode does fall into the category of something I am fascinated by and I love to talk about and that is diabetes in media. And by the way separately. Both of my guests this week have bananas misdiagnosis stories, we get to that right out of the gate. Wait till you hear what one of their doctors ended up doing. I have never heard this happening before. It was pretty wild. And we will talk about the book I mentioned that it is (Un)Doing Diabetes Representation, Disability Culture. It is authored by Dr. Heather Walker and Dr. Dr. Bianca C. Frazer. It contains essays by other authors including Dr. Phyllisa Deroze a little bit more about the book in its public description. It says undoing diabetes is the first collection of essays to use disability studies to explore representations of diabetes across a wide range of mediums from Twitter to TV and film to theater fiction, fan fiction, fashion and more. In undoing diabetes Authors deconstruct assumptions the public commonly holds while writers doing diabetes present counter narratives community members create to represent themselves. And just a little bit more about my guests. Dr. Heather Walker is Associate Director of qualitative research at the University of Utah health. She was diagnosed with type one at age 11 in 2001, and Dr. Phyllisa Deroze began blogging at diagnosed not defeated almost immediately after being misdiagnosed. She found out later with type two diabetes in 2011. And now she has been correctly diagnosed with LADA. Dr. Phyllisa Deroze is also the founder of Black diabetic info after the interview, and it's a pretty long interview. And that's okay. They have a lot of great stuff to say, I'm going to come back I want to tell you about something that happened to me. It's not quite diabetes in media, but it is diabetes jokes. So I want to tell you how I handled something in a Facebook group. But I'll come back and do that after the interview.   Dr. Phyllisa Deroze, Dr. Heather Walker, welcome. I'm so happy to talk to you both. Thanks for coming on.   Unknown Speaker  4:50 Thank you.   Stacey Simms  4:51 So let's start if we could, I mean there's so much to get to and I was so excited to see you both at friends for life and see the presentations that you were doing but which You mind kind of backing up a little bit and kind of letting people get to know you? We could start just tell me a little bit about your diabetes diagnosis story. And Phyllisa, let me let me ask you to start with that if I could.   Dr. Phyllisa Deroze  5:12 Um, yes, I was diagnosed shortly after getting my PhD in English literature. I had moved to North Carolina, I experienced the classic symptoms of hyperglycemia. I had seen a physician who didn't check my blood sugar told me that I just needed to drink Gatorade because my electrolytes were off. A little later I was in the hospital. Blood sugar didn't register. Finally, I think first reading was like 597, or something like that. So I was told I had diabetes, and what type didn't get clarified until I was discharged. When I was discharged. I was told that I had type two diabetes, and I lived with that diagnosis for eight long years, it was inaccurate, I was misdiagnosed. I live with latent autoimmune diabetes in adults. And I was correctly diagnosed and joined the T1D group in 2019. I get this   Stacey Simms  6:06 question. Every time I speak to somebody like yourself who was misdiagnosed like that it happens so often. How do you live with what is really type one for all that time? I mean, I can't imagine you felt very well.   Dr. Phyllisa Deroze  6:20 I did. Okay, after diagnosis, I had a pretty long honeymoon phase, I actually lived about three years with just diet and exercise. I think one thing in the T1D community is that we don't talk enough about honeymoon phases and people who have latent autoimmune diabetes and adults, because so much of the common knowledge about type 1 diabetes is that everyone is insulin dependent. And that's not necessarily true, everyone will become insulin dependent. And that's an important message, because I never thought to have test done until I went into DKA. Again, so I myself didn't know that it was possible to have type 1 diabetes have a long honeymoon period and be misdiagnosed.   Stacey Simms  7:09 Yeah. The more I learned about Lada, it is so similar, but it's so different. There's a lot more to it, I guess, is what I would say, than I had realized for sure. Heather, what is your diagnosis story? When were you diagnosed with diabetes?   Dr. Heather Walker  7:21 So I was diagnosed at 11. And I also sort of have a misdiagnosis story. So I had diabetes, and I was in what I assumed to be a honeymoon phase for three months before my diagnosis actually came around. Because I was seeing a physician at the time who looked at me, skinny white girl, whose parents were really afraid because she kept losing weight, who was just about to hit puberty, and he thought eating disorder. No matter how many times I told him, I was eating everything in sight and drinking everything in sight. That's still what he firmly believed. Luckily, at about three months after I started coming in to see him for this and for the symptoms, he went on vacation, and I got to see his pa instead. And his pa John, you know, it's so funny. I don't even remember his last name. But just he's just warmly John to me, right? He just looked at my chart, and he knew right away, it's like, oh, you have diabetes, you know, so calmly, and I remember that freaking me and my mom out. We were in the appointment. It actually was my dad. But still, the first thing that we did was went and got me a doughnut because I think my dad was like, alright, well, maybe this is it. You know, he'll never eat another doughnut. Yeah, like, we really don't know about this, we don't know what's gonna happen. And so they didn't do a glucose tests on me. They just drew blood. So we didn't know right away anyway. And then it was like, you know, the next day, they called and said, You need to come to the hospital and for US history.   Stacey Simms  8:45 I'm guess I'm gonna get ahead of myself a little bit here. I don't want to start drawing conclusions too early in this interview. But it is interesting how both of you were misdiagnosed. Somebody else made an assumption, because of how you present it to them. I've got to imagine. So Heather, let me ask you. And then Phyllisa, I want to ask you the same question. But other how has that stuck with you? I mean, you you kind of set it so matter of factly they're like, Hey, he assumed I had an eating disorder. Did you kind of carry that with you?   Dr. Heather Walker  9:11 Oh, yeah, absolutely. I think I got a huge chip on my shoulder. From that. I mean, there's something about you know, being 11. And being in a world that already doesn't take you seriously, and then have a life threatening disease thrown at you. And your doctor doesn't believe what you say, even before diabetes. And Stacy, I've heard on episodes of your podcast you talking with with teens about or people who were teens with diabetes, about how fast it speeds your life up, right? Like you don't really get to have a childhood you don't really get to be a teenager and like, you know, carry on with reckless abandon because you just can't because there's all these safety things that you need to take into account. And so, but even before diabetes, I was kind of like that, like I was, you know, a 30 year old and a 10 year old body. I've been the same Age since then until now, but that, for sure gave me a big chip on my shoulder. It made me want to like, look into everything and see as it's happening to other people is like what's going on with this diabetes stuff.   Stacey Simms  10:13 Phyllisa, I'm curious for your experience too, because as you you kind of already said something interesting, which was like, Well, I didn't know how were you supposed to know? Right? The doctor supposed to know.   Dr. Phyllisa Deroze  10:23 Right. What's interesting is that when I was told that I needed to look into LADA because I had given a speech in Dubai to a roomful of doctors from the MENA region, Middle East and North Africa. And I was simply telling them my diagnosis story, very similar to what I share with you is a little more in depth, but pretty much that was the basics. And you know, I'm 31 years old at the time. And so during the q&a, some of the physicians from Tunisia, they raised their hand, and I was like, yes, they were like, well, your story kind of sounds more like LADA than type two. Are you familiar with it? And I said, not really. I mean, I know Cherise Shockley has it, but I don't know any more details than that. And it was at the lunch afterwards, one of the physicians came up to me and she said, you really ought to look into seeing if you have a ladder, and don't stop until you get the answer. And that kind of haunted me like, don't stop until you get the answer. But I just thought it was a simple request. So I asked my Endo, I got told no, I asked three months later, if I had ever been tested, the answer was no. Well, can I get tested? No. I saw a second opinion. No, you have type two. So I definitely think their view of me being an African American woman living with obesity played a lot into the constant denials. It took me over a year, another decay episode, and begging my gynecologist to run type one antibody testing for me in order to get it. So it wasn't easy. I literally had to not stop until I get the answer.   Dr. Heather Walker  12:11 For Phyllisa, it was your OB they finally gave you the testing you wanted?   Dr. Phyllisa Deroze  12:15 Yes. Because I told her, I can't get an endocrinologist to run this test. I know I'm in decay, a I'm losing weight rapidly. And she listened to me and she said, Okay, she said, I don't do endocrine, I do you know, OB GYN. So we were literally on her computer on Google trying to find the codes to request the testing. And so she was calling around, what do I put in to order this? And I remember when she called and she said, Listen, you know, this is out of my field. But come get these results, because your endo was going to need to see them. That was all on me. I got the results. I just remember seeing the get 65 should be below five. And mine was greater than 7500.   Stacey Simms  13:05 Oh, I'm almost speechless. I mean, I'm not I'm never actually speechless. I came in less than that happened. But the idea that you have to work so hard to get those answers, I've got to assume just like with Heather, that had to inform not only your experiences going forward, but the way you help other people because you both are extremely active in the community. You You're both very prolific writers, you both have, you know, studies and presentations that we're going to talk to, but Felicity, that whole experience with somebody else saying, Well, I think you have lotta to I got to get answers for myself to finally getting them. When you look back on that, how does it inform how you talk to other people about   Dr. Phyllisa Deroze  13:43 diabetes? I tell people definitely to be way more assertive than then imagined. Like, I honestly did not think it would take me constantly asking for the results. I thought it was like a simple test. I mean, you're testing my cholesterol, you're testing my a one C, like you're already getting a vial of blood, like just check off one antibody. So I thought it was something simple. And it turned out it was not, which was very frustrating for me. Because like in that I realized my education level didn't matter to them. I was literally like you are African American living with obesity. And that was what I believed to be their motivating factor to deny me testing. And what's so problematic about that, in addition to everything else you can imagine is as my physician Wouldn't they want to know that they're treating the right condition. Yeah, I'm asking so my records actually have a note from my endo saying, Melissa asked multiple times for type one antibody testing, and I denied it   Stacey Simms  14:55 literally says I denied it in your file.   Dr. Phyllisa Deroze  14:57 Yes. Wow.   Stacey Simms  14:59 I'm just sorry. I got to ask, did he show that to you as an apology? Or did you sit there in the room while you made him write it?   Dr. Phyllisa Deroze  15:05 What I did was I refused to leave the appointment. I love it until there was this moment of record, like, I need you to recognize that I have been asking you for over a year for this test. We just need to come to that because it was like, Oh, you need insulin, let's go. And, you know, I was kind of being escorted out of the room. And I said, No, I'm literally not going to leave this chair until we have this conversation. And so I didn't know that my endo would put it on my records. But I definitely refused to leave until that conversation was had, they did apologize. And there was a note and my files.   Stacey Simms  15:47 It just didn't have to be that hard. This could have been an episode in and of itself. Want to make sure to get to that the research or the publications that sparked my interest here.   Right back to our conversation and right was like kidding about the diagnosis stories, and then her doctor putting in her chart that he was wrong. Oh my god. Alright, Diabetes Connections is brought to you by Dexcom. I want to talk for a minute about control IQ, the Dexcom G6 Tandem pump software program. When it comes to Benny's numbers, you know, I hardly expect perfection, I really just want him happy and healthy. And I have to say control IQ, the software from Dexcom. And Tandem has completely exceeded my expectations, Benny is able to do less checking and bolusing. And he is spending more time in range. This is in a teenager, a time when I was really prepared for him to be struggling, his sleep is better to this is great for all of us basal adjustments possible every five minutes, the system is working hard to keep him in range. And that means we hear far fewer Dexcom alerts, which means everybody is sleeping better. I am so grateful for this, of course Individual results may vary. To learn more, go to diabetes connections.com and click on the Dexcom logo. Now back to the interview. And we are moving on to Dr. Walker's book. Heather, tell me about the book that's coming out.   Dr. Heather Walker  17:14 Okay, I'm so excited to be talking about this. So you might hear that excitement in my voice. So it's awesome. The title of the book is called undoing diabetes representation, disability culture, that's a full title. And it's going to be released very soon, by the end of the year, we hope it's a collection of essays that looks at diabetes in a new way, the volume or the volume as a whole. You know, it points out that all the stereotypes of diabetes that the public really buys into are like maintained through a lens of individualism, our society looks at diabetes as a problem of the individual person right of their choices. And so to respond to that public tendency, right to like focus on the individual, all of our authors in the book do the opposite. So in the collection, they ask questions like, What do individualistic stereotypes reveal about the social conditions for the diabetic person? So it like flips it on its head? And also what do they conceal, right? What is stereotypes hide? What do they prevent us from seeing? And how do these like harmful narratives, these harmful assumptions, these stereotypes that just break down our community? How do they reinforce ideas that the public already has, for what constitutes like a normal or a good body, which is just like, as a person who's living with diabetes, this makes me so excited. And then I'll just add one final thing about the book, which is our collection is really unique in that we use disability studies frameworks to unpack all of these questions. What are disability studies? So this ability studies is a field of study that looks at the social conditions of disability. So how is disability perceived in society? How is it represented on the screen, and all of those types of things. And so we have frameworks in the field that we use, it's kind of imagined, like a camera lens, right? That's kind of like a framework and the camera lens has a filter on it. And so when we look at this movie, or this film, we're looking at it through a specific lens with a specific filter. In our book, all of our authors are looking at different types of media, through these disability studies, frames or lenses, and sort of seeing how they operate in society and what they do, and then poking holes at what it does. And every chapter is brilliant, and Phyllisa is going to talk about hers, but as a volume, like I could not be more proud of this collection and all the work that it does. And all of like the change and the shifts it's going to make for readers.   Stacey Simms  19:43 It's so interesting to me because of the mediums that you use so let's let's ask Felicity if you want to if you could talk about what you presented friends for life, what you talked about you were looking at TV shows, right and not unfortunately not more current ones which sometimes get it right.   Dr. Phyllisa Deroze  19:59 Um, yeah, I was the title of my chapter is laughing to keep from dying black Americans with diabetes in sitcoms and comedies. So I was looking at television shows as well as movies, and focusing on how those representations make meaning of diabetes within African American communities. Part of this started, when I thought about the first time I heard you have diabetes, and I was in the emergency room, my first thought was, I'm going to die. Like that. Was it? Like, I just thought like diabetes meant death? And when I started unpacking that, to find out where did I get that messaging from? Because no one in my family has diabetes. I didn't personally know anybody with diabetes. It really came from television and film, and of course, our media. And I thought it would be really nice to look at some of these classic movies and TV shows that are very popular in African American communities to see what story is told when you focus on the diabetes characters. Can you talk about some examples? Yeah. So for example, like Soul Food is one of those classic staple in African American film, a memory just like the color purple is something that people cite quotes from all the time. But when you look at Soul Food, it really stems from Big Mama who has diabetes. We understand this because she burns her arm on a stove. And a couple of things later, she passes away, she has an amputation and then a stroke. And she's no longer with us. The Big Mama character also comes up in Tyler Perry's plays and his films in his television shows. And again, these are staple matriarch characters who have diabetes. Now Madea lives on because that's a part of, you know, Tyler Perry series, but she has diabetes Boondocks I look at and of course Blackish. So blackish, I would say is probably where we first see the the image turn, where we first see a character with diabetes, checking their blood sugar, and all the other stuff we don't. And so what that tells us is that diabetes is going to cause either a slow death or quick death, perhaps an amputation, if you're familiar with 30, Rock. Tracy has diabetes there. And he does this skit where he replaces his foot with a skate. And he's like I'm practicing for when I lose my foot to diabetes. And that is the thing, there was a diabetes diagnosis, and the next thing, he's already imagining himself with an amputation. So when we look   Stacey Simms  22:59 at something like this, what do we take from it now? I mean, we you can't go back and change those representations. What do you want us to kind of learn from them.   Dr. Phyllisa Deroze  23:08 But I would ideally like for the film industry, to change their portrayal of characters with diabetes, I mean, all characters, not just African American ones. But last year, there was the release of the Clark Sisters first ladies of gospel biopic on lifetime. The Clark Sisters are like a staple in African American culture. They were these gospel singers that were absolutely phenomenal. The Lifetime movie of them ended up being the highest rated Lifetime movie and four years. This comes out last year, the mother has diabetes. She is seen not taking her medication, not caring about her diabetes. And of course, there's all these tragedies that happen. And the thing is, when we don't see African Americans using CGM technology, insulin pump technology, we don't see checking blood sugar. What happens with those messages is that it becomes the common assumption. So when someone goes to the doctor, the doctor may think, Oh, well, black people don't check their blood sugar. And so then that begins to impact the individual prime example. I was in a setting once. And a woman said, Oh, I didn't think black people ate vegetables. What? Yes, yes, literally said this. And I was just so floored, but I thought, okay, she didn't think black people ate vegetables. And so I'm wondering like, what images you know, is she being fed? Right? Yeah. came from so the thing is, is we have to look at our television and our film, not just as sources of enjoyment for some people, but also as information that provides an understanding about certain people. So literally in all of the films and television shows that I look that there were probably two that showed the African American character with diabetes, actually living a rather fruitful life. Outside of that it was amputation and death. And so when someone is diagnosed with diabetes, like I was, and I didn't know anyone with diabetes, instantly, the first thing I thought about was death and dying. And that association that comes with it, when I hadn't seen people living well, with diabetes, I just want to say this. When I was first diagnosed, I went to Barnes and Nobles sat down in a bookstore with one of Patti LaBelle cookbooks, and I flipped to a page and she said, in this book, I had diabetes, but I wasn't going to let diabetes have in me, and I cried, right there in the Barnes and Noble, because that was the first time that I had ever seen or read or heard someone who looks like me diagnosed with diabetes, and they were determined to continue living their life. Like if you want to see that image, where do you go? Because our television and our films are not that place. And that's also the fertile ground for which black diabetic info on my website started and my blog, because I didn't know where to go for that. Like, I got it in Patti LaBelle cookbook, and I cry. But then where can I go to see it again? Yeah, didn't have an answer. Heather, I   Stacey Simms  26:53 want to come back to you and ask you something I saw you posted about on on Twitter. A couple of months ago, Pixar posted a teaser for their new movie turning red, which I think comes out in the spring. And there's like a split second shot of a kid wearing some kind of what looks like diabetes device. It's, you know, an insulin pump or a CGM. And they confirmed it. I actually talked to somebody behind the scenes at Pixar and fingers crossed, we'll have them on the show in a couple of weeks. But it is a diabetes. I'm so excited. But it is a diabetes device. But you were pretty adamant about one point, would you mind sharing that? And why? Sure.   Dr. Heather Walker  27:30 So when I saw that, you know, I came late to the show. Let me preface with that, right. Like, by the time I saw that trailer, the community was abuzz. Like they everyone was so excited. And what I saw was, Oh, my goodness, we see a character with type 1 diabetes. And as someone who is completing a chapter for a book of essays on representations of diabetes, you know, my antenna went up when I saw how the community was claiming that. And I just thought to myself, This is not a representation of type 1 diabetes, this is a representation of diabetes, because people with type two can and should have access to those devices as well. And so for the type one community to be exclusive, in this moment, in this grand opportunity for all of us to celebrate together, really sort of broke me down in a way, you know, I was like, Why? Why can't we just keep this open? Why can't we make this a win for everyone? Instead of saying, quote, unquote, type two people don't use these devices? And I think that the reason why it was like it was like a jab in my heart is I think that that claiming does something in society, right? It, it functions to show us that large groups of the diabetes are the type one community feel like, maybe type two diabetics aren't using that technology, because they're the ones who don't care. And they're the ones that the stereotype is about. And so that shows me that we have pockets in our type one community that buy into the stereotype just like the public does.   Stacey Simms  29:06 I'm looking at the description of the book in terms of the different mediums you use Twitter, to TV to film to theater to fiction, fan fiction.   Dr. Heather Walker  29:13 Yeah, we have a chapter, whatever author of your chapter covering a segment of fan fiction, and it's wonderful and actually, that author and she discloses in her chapter as well, so I'm not outing her. She also lives with diabetes herself. And I'm pretty sure she has a physical science PhD. So this genre and this discipline is new for her and she just like, Oh, she did such a great job having us understand how diabetes is being pulled into fanfiction. Alright, we   Stacey Simms  29:46 now should have set this up better if you're not familiar, and I'm going to do probably a terrible job of describing this. If you're not familiar. Fanfiction is stories, poems, pictures, it's fiction, written by people who are Fans have a genre or fans of a certain bunch of characters, and then they kind of make up their own stories using the established characters most of the time. So in other words, you love Harry Potter, you write yourself into Harry Potter or you write a different adventures that the characters might have had. And it's accessible to pretty much everybody. Is that how I feel about fanfiction? Yeah, I   Dr. Heather Walker  30:18 think it's kind of a, you know, once you get into it, you know where to look. You can probably Google it. And you know, I'm not even really in the world of fanfic, full disclosure and transparency. But I feel like I want to beat now that I've read, I've read that chapter. So   Stacey Simms  30:34 these are characters people are writing about that loop with diabetes, or they are the just bringing diabetes into exactly as it sounds. It sounds silly, as I'm saying it out loud. Like I'm explaining it. I'm trying to, you know, hit it over the head to the to find a point. But just to be clear,   Dr. Heather Walker  30:48 yes. So I think in the pieces that this author talks about in their chapter, it's situations where the characters themselves do not have diabetes, and the fanfic authors write them having diabetes. Oh, so they add that to their character.   Stacey Simms  31:04 You know what we were doing that a long time ago? Because I don't know if you know, Heather, and Phyllisa, but Bob, the builder definitely has diabetes, because why else? Would he have that big belt around his equipment? Because that's where his insulin. So anytime we saw somebody on screen with that, he was like, Oh, he's got diabetes. I didn't mean to interrupt Heather. But that clarifies it for me.   Dr. Heather Walker  31:23 Oh, yeah. That's a perfect example. Right is imagine that we had a fanfic author who loves Bob the Builder when they were a kid. And now they're writing the whole story about Bob, the builder and his diabetic life. It's wonderful. The book itself,   Stacey Simms  31:37 is this something that's accessible to people? And I asked that I mean, is it more of an academic book, tell me a little bit more about that.   Dr. Phyllisa Deroze  31:43 So one of the things that I like about the book is that it's assessable. For a large reading audience, if you are a casual reader, you can get through it, if you are an academic, you can get through it. So it's not laced with academic jargon. But again, we are using theoretical frameworks, but in a language that is accessible to everybody. So that's one I definitely enjoy about the collection, is there something in there forever?   Stacey Simms  32:13 And that's a great point, because I think we do get a little nervous about academic type books, Heather, right. I mean, it's, it can be a little scary and off putting it away.   Dr. Heather Walker  32:21 Yeah. And I'll just add, you know, we have, so we have several authors who are like myself, and Phyllisa, who are scholars and community members, which is very nice, and just like really brings it home. And so, you know, you kind of know, as a community member, that you're going to get authentic pieces by people who are living with this, in addition to having a couple of us who are scholars and committee members, we do have chapters from community members, from activists who don't have their hand in academia at all, and they're writing about their personal experiences. And, you know, they're still talking about representation in different media, but they're doing so from their lens existing in the community existing in the world with diabetes. And if nothing else, although I, I would also say what, you know, Melissa said was true, all of them are accessible, but especially those that are coming, you know, from the mouths of babes that are coming from our community members, who, who many people who do pick up the book already know,   Stacey Simms  33:20 before I let you go, let me let me pose this question to each of you in kind of a different way. And that would be you know, full. So you mentioned blackish, being a bit of a turning point, the show where people are shown, you know, a character shown checking blood sugar. I'm looking back over the last year and thinking of a more accurate depiction of diabetes, or at least type one with the Babysitter's Club on Netflix with we'll see with Pixar is turning red, but with Greenland, you know, written by someone who's married to Greenland, the movie Written by someone who is married to a person with type one, do you think things are getting better? And and I would ask you, as well to include the black community, because we don't talk about that enough. You know, I mean, I'm trying to think if all of those I mentioned they did not feature people of color. Do you think it's getting better? I mean, what would you like to   Dr. Phyllisa Deroze  34:06 see, I would like to see more diversity as we get better in the American film industry. When I look at all the films that I studied, type 1 diabetes is grossly under represented like none of these characters have type 1 diabetes, which again, if you think about myself, 31 years old, being diagnosed, I never knew type 1 diabetes could be an option. I'm still not seeing African American characters using technology wearing CGM. Often when I'm out in public. People are asking me about my devices. It's the first time you're seeing them. I'm explaining insulin pumps. And so while things are getting better, I would say within shows, television shows and films that are popular within African American characters. Progress is about Very slow on that. And   Stacey Simms  35:01 Heather, from where you stand. Could you share a little bit about what you think is going on in media? Are we getting better?   Dr. Heather Walker  35:07 Yeah, I think Phyllisa what you're speaking to right is incremental ism. It's like we are getting better slowly, like painfully, slowly, bit by bit. I mean, I'm inclined to say yes, only because the number of representations that we're seeing are increasing. But, you know, I'm hesitant at the same time to say yes, because we still have to ask, okay, if we even if we have more representation, are they representations that are doing good for diabetic people in society? Right, like, not necessarily, Are they accurate? Or are they you know, a direct portrayal of what people experience? But what is the public taking away from that representation? Like, what are they leaving that with? And if we have a lot more characters all of a sudden who have diabetes, but the audience still thinks, Okay, well, diabetes is still what I thought it was, right? It's like overweight people over eating, making bad choices not exercising? If that's what they're leaving with, then the answer, of course, is no, we're not making progress, even if we're having more characters. And what I find is, what I think we would need to make really big change would be to centralize a character with diabetes instead of making them a sub character, right? Yeah, like for the baby sitters club. And Stacey is not a new character with diabetes is has old, right, like we've known that Stacey has had diabetes for a long time, it just wasn't being produced at the quality it's being produced at. So that's not really even a new one. But we do have new ones, like there's a just a year and a half ago, or so there was a new series called Sweet magnolias. And one of the characters there has, or is about to be diagnosed with diabetes, and it's the same, it's the same story. It's like, you know, if you don't fix your habits, you're gonna get diabetes, and you're gonna die like your mom and all these fear tactics. And so and I really want to be hopeful, Stacy, I really want to be hopeful and say, Yes, we're headed in the right direction. But I just don't know i We need people in the writers room with diabetes, and other health conditions and disabilities, to have a direct voice and call things out before they're produced.   Dr. Phyllisa Deroze  37:19 I agree 100%, we have to be in the room. Because some things they don't make sense. For example, blackish, you do see him check his blood sugar. However, once he puts the strip in the meter, he starts talking to his wife, and anyone who knows how to use a meter knows that you have about 30 seconds before you have to put a drop of blood on that thing, or else you've lost it. So even little things like that.   Stacey Simms  37:46 I had indicated that was the last question, but I got one more. And that would be and II feel free. Either one of you jump in? Or both? What can the community do? You know, sometimes I feel like, you know, I stopped correcting people online a lot of the time unless it's really egregious, you know, but if they make a joke, or there's a hashtag diabetes with dessert, or things like that, like I'm tired, you know, and then you have no sense of humor, you know, gosh, what can we do to try to fix this? Or what can we do to to improve the situation?   Dr. Phyllisa Deroze  38:15 I think, this research, this book, this podcast, these conversations are so important. So for example, prior to writing my book chapter, I didn't see anything talking about the representation of African American characters in television and film. Whenever I talked about diabetes characters, there was maybe the one mention of soul food, but like, there was a dearth there. So this book chapter hopefully helped spark the conversation in wider circles. And so by talking about it more, and rallying around these things, hopefully, the attention like first recognizing that there is a problem, and then getting think tanks together to talk about them is probably the best plan of action.   Dr. Heather Walker  39:06 I love that. And I would just add, you know, I think what the community needs to prioritize is inclusion, right? Like, we need to give up on being exclusive, especially in the type one community, and we need to open our doors to people with type two people with Ladda. People with all like, there are so many different types of diabetes, that even saying type one and two is, is exclusive. I really believe that if we can do that, and if we can elevate the voices of people with diabetes of all types, who are also people of color, then we'll make a lot of progress in our community because we'll start seeing those perspectives that we've been missing that make us as a community really limited to our own perspective. To me, that's the only way to do it. I love the idea of a think tank Phyllisa I think that's brilliant, and just absolutely, and I'm sure you would agree needs to be diverse, right? Like it can't Be a bunch of like, white people. I don't know. There's a lot we can do. There's a lot.   Stacey Simms  40:08 Thank you both so much for joining me. This is amazing. I'm so thrilled to have you both on the show, you've got to come back on there. We just kind of scratched the surface here. So thank you for spending so much time with me.   Dr. Phyllisa Deroze  40:18 It's a pleasure. Thank you for having me.   Dr. Heather Walker  40:21 Yeah, this has been so fun. You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  40:34 More information about my guests and about the book on diabetes all at diabetes connections.com. As you know, every episode has its own homepage with transcriptions and show notes and all that good stuff. The transcription started in January of 2020. And we're working our way back here in there, hopefully filling in all the blanks. But right now, not every episode before 2020 has a transcription. And I should tell you just I don't want to get ahead of myself here. That Pixar movie that we talked about turning red. Since our conversation, they put out another trailer and it showed more diabetes gear, another child in the movie is wearing a Dexcom. So it looks to me I mean, really can't tell yet. But it looks to me like one kiddo has some kind of pump. And another kiddo has a Dexcom. So as I said, I had a contact at Pixar. And I've got another one now. And it looks like there might be an actor, a voice actor in the movie who has diabetes. So we're to sort this all out. And I should be able to have somebody on about this. I don't want to over promise. But the folks at Pixar have been really receptive. So that looks like they won't do it too far in advance because the movie comes out in March. So as we get closer, I'll keep you posted for it. And I had mentioned a story before the interview about not necessarily diabetes in media, but about jokes. And I don't know about you, but years ago, I was on high alert for diabetes jokes, you know, I can't eat that, or the the hashtag of my dessert is diabetes. And I don't know, I got burned out. And I don't talk about it as much. I don't police it as much, certainly, but I couldn't help myself last week, at Christmas, I'm in a group. It's a very clever group. It's called fatten the curve. If you want to join it. It's a public group, a friend of mine in the Charlotte area started at the very beginning of COVID. Obviously, it's a play on flatten the curve. And as you would expect fatten the curve is all about food. And it's just become a place where people who cook and eat like to share their photos. And somebody posted around Christmas time, you know, it's my diabetic coma, and then all of this food. So I kind of did the do I want to go to I want to do this, or I want to get this person's face. So I just very nicely said, Hey, diabetes jokes are never cool. Not sure if you thought about that. But hey, the food looks absolutely delicious. You know, hope it was as good as it looked or something nice like that very casual and breezy. Just like Hey, dude, not cool. But moving on. And there's a couple of other people in the diabetes community who have joined that group, but it's not diabetes, it's just food. But you know how it is when when Facebook shows you something people, you know, jump in. So other people commented like, yeah, Stacey's right? Please think twice. And this guy apparently lives with type two posted like a non sequitur about his scientific studies and stem cells and all this stuff about diabetes. He did, obviously, not really sunk in I don't think, but he didn't respond negatively. And I just said, You know what, fine, I'm moving on, right? But then a couple of days later, somebody else popped in, it was like, nobody can make a joke anymore. You're too sensitive, and why we're just too easily offended. And that's when I was like, Alright, now I need to respond. So I very nicely, I think it was nice. You know, I wrote a response. And I said, Hey, you know, once the guy said he had diabetes, you'll notice I didn't clap back, I didn't get nasty. We are all entitled to say whatever we want. But it's important to understand that what we say does have meaning and impact. And as you listen, I know, you know, all this, I did the standard. When we joke about diabetes, we don't do this with other conditions. We don't talk about a cholesterol coma, or a high blood pressure problem when we're eating big meals like this. Why is it only diabetes? And did you realize that actually, you know, the blame and shame that can be encountered here prevents people from seeking treatment or makes them feel like it's all their fault, and nothing they do will matter. I posted all that waiting for the response. There was none, which I'm really glad about. Because I don't want to argue I just it's exhausting. But everyone's not something like that pushes my buttons and I have to save something. Hopefully that group will just go back to posting yummy pictures of food because it's been two years and we haven't had any issues like that. I mostly post pictures of what my husband cooks. Because I don't like to cook and what I do cook isn't really Facebook, really. So I guess we're often running for 2022. We are back to the Wednesday in the news episodes. I hope you'll join me for that either live on Facebook, YouTube or Instagram, or as an audio podcast which comes out on Fridays. Thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon, in a Couple of days until then, be kind to yourself   Benny  45:07 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

Peloton instructor Robin Arzon was diagnosed with type 1 as an adult, when she was already an endurance athlete and marathon runner. After her diagnosis, she was determined to keep those incredible fitness feats coming. Arzon is now Peloton's VP of fitness programming, an ultramarathoner, a best-selling author, a new mom, and more. If you're looking for some new year fitness inspiration, she's got you covered. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. More about Robin Arzon More about Gvoke HypoPen Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription Below: Stacey Simms 0:05 This is Diabetes Connections with Stacey Simms. This week, peloton, instructor Robin Arzon was diagnosed with type one as an adult when she was already an endurance athlete and marathon runner. after her diagnosis, she was determined to keep those incredible fitness feats coming. Robin Arzon 0:24 I really have had to treat myself kind of like an experiment like get curious and just see and trust that even on the days that aren't my best, I'm trying my best and my best is good enough Stacey Simms 0:35 Arzon is peloton's vice president of fitness programming an ultra marathoner, a best selling author, a mom, and more. If you're looking for some new year's fitness inspiration, she's got you covered. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm always so glad to have you here, you know, we aim to educate and inspire about diabetes with a focus on people who use insulin. this time of year I always seem to have a fitness interview, right? That makes sense. It's the new year we're making resolutions. We're getting motivated. So you know, take a look back in years past I talked to Chris Rudan from the Titan games. I talked to Eric Tozer, who did seven marathons on seven continents in seven days, you know, stuff like that. But you don't have to have these incredible achievements, these these incredible goals. You know, this to be fit to stay healthy. I mean, I'm certainly never doing an ultra marathon. It's not one of my goals, especially as I get older, I want to stay moving. That's really important to me. So well, somebody like this week's guest Robin Arzon isn't I'm sorry, Robin isn't going to motivate me to ever run a marathon. She is going to inspire me to try a little more to do some different things. And I hope she inspires you in the same way as well. Whatever your fitness goals are for 2022 I have a story that I want to share about something that happened recently with me and Benny, it isn't really about new year's resolution. So I'm going to keep it till the end of the interview. I'll come back and tell you he challenged me to do some things kind of an empathy exercise about type one, I failed miserably. That's the spoiler. So we'll get to that in a little bit. This week's interview is one of my shortest ever I had very limited time with Robin. So I decided to not ask her about her diagnosis story. I skipped a couple of questions that I would usually ask, but in case you're not familiar with her, I wanted you to learn more. So here is a quick explainer that she gave beyond type one a few years ago, and we're playing this with their permission. Robin Arzon 2:32 I am a reformed lawyer turned ultra-marathoner. I'm head instructor at peloton cycle as well as vice president of fitness programming. I'm on the Leadership Council beyond type one. I was an endurance athlete Well, before I was diagnosed with type one diabetes, I was diagnosed in February of 2014. So only a few years ago, as an adult, I was in my 30s when I was diagnosed. And it's been an interesting little dance I'm doing with my pancreas these days. I had just returned from a trip to India. I was in India for about three to four weeks with my mom and my sister. And when I came home back to New York City, I thought I had jetlag or something like my body just felt really sluggish. And I had extreme thirst. That was the number of extreme thirst and frequent urination. And that was the number one thing that really was strange, because I know it wasn't dehydrated. And as an athlete, I kind of could tell immediately that something was off with my body. I had an awareness of type 1 diabetes, but certainly not on any kind of medical or even practical level. And I definitely didn't know how to how to live with it. That was actually my very first question after I was diagnosed was how am I gonna run 100 mile races? And that was a question pretty unfamiliar for my endocrinologist and so then I want an immediate search for all the technology that would allow me to train uninterrupted. I actually had a half marathon two weeks after my diagnosis and I and I ran it. And I think I was on a pump within a week that I had a Dexcom within 14 days. Stacey Simms 4:27 Robin was diagnosed in 2012. She's now peloton vice president of fitness programming. She and her husband had a baby in 2021 and January just a couple of days from this episode going live. She is publishing a children's book and you will hear her talk about that. There is a video of this interview over on the Diabetes Connections YouTube channel if you want to watch I will link that up in the shownotes. Full disclosure. The reason I had limited time for this interview is because Robin is on a media tour courtesy of Gvoke Hypopen so you will hear a lot about that in this interview ended agreed To do this, I also agreed to post information about Gvoke in the show notes which I have done. If you've listened for a long time, you're probably tired of hearing these disclosures. But if you're new, it's very important to me that I'm open and honest about what you hear on the show. And I really thought the tradeoff of hearing about Robin's experiences and advice was worth it. Robin, thank you so much for joining me and spending some time with me and my listener. So how are you doing today? Robin Arzon 5:29 I'm great. So nice to speak with you. Stacey. Stacey Simms 5:31 I know that you have a little bit that you want to talk about with Gvoke. They are a sponsor of my podcast as well. Let's just dive in and talk about that because being prepared is just part of the reality when you live with diabetes, right Robin Arzon 5:42 100% I mean, in the landscape of things that are uncontrollable of living with diabetes and diabetes management, we have to control what we can control and Gvoke Hypopen is the first auto injector of medicine if we have a severe low blood sugar event, and the looming prospect of that can be scary. And as an ultra marathoner as someone who lives as an athlete lives with movement, you know, and I know your listeners are very, very well versed in the diabetes landscape, and probably can relate to that to a certain extent. I needed to take agency back, which is why I partnered with Gvoke Hypopen because recently, for example, when I ran the New York City Marathon, I had the Gvoke Hypopen in my race kit. Thankfully, I didn't need to use it. But it does give me peace of mind out there on the racecourse, you know, knowing that I have this medicine accessible to me, if I have a severe low, Stacey Simms 6:31 I'm going to knock wood everywhere I can find some because yeah, I've had to use Gvoke or any kind of emergency glucagon in the 15 years since my son was diagnosed, have you ever had to use anything? Robin Arzon 6:41 Thankfully, no, thankfully, I have not had to use it. And I'm very grateful for that. And I'm also grateful that I sought out the right care for myself. And I advocated for myself with my doctor. And I recommend folks do the same and of course, do their own, you know, investigation of safety and risks and allergies and all the things associated with with any medical prescription. But we have to advocate for ourselves and figure out what works for our lifestyles. Stacey Simms 7:04 Alright, so you were diagnosed with type one as an adult, you were already an incredible athlete. And I think I heard you say somewhere that you ran a half marathon a week or two after your diagnosis. Robin Arzon 7:14 Yes. So I had a half marathon, I think a week later. And then I had a 50 mile ultra marathon few weeks after that. So it was a blurry and really daunting time. And I had to figure out quickly, this new life, this new thing, I believe superheroes are real. And I know that folks living with diabetes, diabetes warriors are superheroes. And in my superhero toolkit, It now includes insulin, it includes glucose taps. It includes the you know, the Gvoke Hypopen and it's I developed a mantra actually, during that time that forward is a pace. There are some days when the next step is the only step that you can focus on and that's okay. But I figured it out because it was meaningful to me the first question I asked, when my endocrinologist said, you're going to be living with insulin, your pancreas doesn't produce enough or any, I thought, Oh, okay. And I said out loud, how am I going to cross the ultra marathon finish line I have in a few weeks. And we figured it out. And I made mistakes, and I figured it out. And I educated myself. And I want folks to feel that same empowerment of like, gosh, we're gonna figure it out. We're going to be ready. We're going to be warriors, and we're going to continue to be epic. Stacey Simms 8:24 One of the biggest questions I got when I told my Facebook group for the podcast that we were talking was, again, knowing everybody is different. But you know, just what do you do to avoid lows? Because exercise? I mean, let's face it, some people with diabetes do not exercise because they are afraid of low blood sugar. How did you get past that? How do you avoid crazy highs, crazy lows, when Robin Arzon 8:44 you're exercising, it is a lot of trial and error. And just like anything else, it's observing, just like observing how your body reacts to a certain food, you have to observe how your body reacts to a certain type of movement. For example, lifting weights, for me might make my blood sugar go up. Whereas of course, cardiovascular or aerobic things like the bike with running will make it go down. So I really encourage folks to get curious, start small, right? Well, you don't have to go out and run an ultra marathon. But maybe you know, you start with the 10 minute walk around the block and see what happens. And then you bring you know the glucose tabs or the apple juice with you, I always have some type of rescue carbs, right. And this is really where the Gvoke Hypopen can come in as well. Because you know, you've got that in a severe and you know, in the situation where we're really putting ourselves in a low blood sugar, severe low blood sugar circumstance, we have medicine that is on the spot that is going to react on the spot that gives me a lot of peace of mind. So it's that two pronged approach of daily diabetes management. And then you know, having this in a circumstance where things get a little bit more severe, or a lot more severe. Stacey Simms 9:48 Yeah, we have quite a few people who said I take her class I see her all the time. Have you ever had a low blood sugar during instruction like when you're doing a class? Robin Arzon 9:57 Thankfully, yes, I've gone low but It's all been manageable, drink some juice, keep it moving. I've never had to stop a workout, thank goodness. And that's literally 1000s of hours of practice of knowing my body and knowing the exact timing of like, okay, I'm going to drink a quarter of my smoothie. Eight minutes before this class, I really have had to treat myself kind of like an experiment, like, get curious and just see and trust that even on the days that aren't my best, I'm trying my best and my best is good enough. That is also encouraging. So So I encourage folks to give themselves that same grace, but also that same dose of bravery. You mentioned that there are folks of your listeners who are so scared that they're not moving, but they're not working out. And that really saddens me, because they're limiting their own potential. And why you're letting diabetes when when you do that. Stacey Simms 10:46 I don't know if you're familiar with Don Muchow, who ran or walked from Disney Land to Disney World that she I did I Robin Arzon 10:53 read about this. He was told Stacey Simms 10:55 when he was diagnosed a long time ago, right. I think it was the late 70s. He was told do not exercise because it was too dangerous. That was a real thing that people were told not all that long ago. And he had to wake up one day and say no, no, you know, so I give you so I mean, sounds silly to say, but I give you so much credit for getting your diagnosis and saying no, no, I'm, I'm getting right back into it. And I've had the privilege of talking to a lot of people in the public eye like yourself who have treated lows while they're on camera. musicians who sneak a sip of orange juice or racecar drivers to kind of have it in their car. Can I ask you do you keep something sneaky? Is your water bottle is the other two maybe that people should look for? Robin Arzon 11:32 One is water and one is juice. I always have some form of juice on me onset always, always, always. And yeah, no shame in that. If I need it. Take a sip, keep it and keep it moving. Thankfully, you know, Stacey Simms 11:44 yeah, I think it's lovely to find out those little things because it makes our kids and a lot of adults feel better to know they're not alone. I mean, that's half of this. Did you find a community when you were diagnosed with type one because it can be very isolating? Robin Arzon 11:57 You know, I was, as I mentioned, I was running ultra marathons at the time and there is an amazing ultra marathoner, Steven Anglin, very accomplished he does hundreds and hundreds of miles at a time really epic guy. He was the first person I went to outside of my medical team. And I was like, What the heck, what do I do and you know, he kind of talked me down. And you know, I hope to be able to pay that forward, especially as being part of this be ready campaign, I want to be a visible example of the fact that we can continue moving, we can continue being heroic in big and small ways in our very own lives. Um, you know, as a new mom, I read fairy tales to my baby girl every night and I want to live a fairy tale that is is is even stronger than things that she's going to read in books, and then pass the baton to hertz to one day live just as gravely, but it does require us to be prepared. And that is literally why I wanted to partner with the Gvoke Hypopen team. Because the reality is, the more prepared we are, the more peace of mind we're going to have. You can't control everything. And with any prescription medication, you have to speak to your medical provider to make sure that this is the appropriate avenue for you. But it does provide me peace of mind in the event that a severe blood sugar is looming. Stacey Simms 13:05 You're coming to 8 years with type one, have you experienced burnout at all yet? You know, it's I think, Robin Arzon 13:12 yes, I mean, there are certainly days where just like really more of this tightrope walk. So it's definitely exhausting. And we make to think like a pancreas requires a lot of mental energy. But I'll tell you something, I've discovered more than burnout, that every single day we have the choice to turn why me and to try me. And the self pity is poison. I think that self pity is poisonous and much more harmful than burnout. For me, I choose to constantly flip the script, constantly turn pain into power, I have no other way. And it's both being someone that lives with type diabetes, and also being an athlete, and also being a mom, and also being an executive and also being an author and also being an entrepreneur. And it's like, let's go. Stacey Simms 13:56 I know we're gonna run a time. Two more questions, if I could, you mentioned your daughter things beep with diabetes. How was she doing with that? I mean, she's so tiny. But does she know what? Robin Arzon 14:05 Oh, my goodness, you know, I mean, we're just learning and she's very curious about the gadgets and the beach and the stuff and I will explain to her, you know, in age appropriate ways of like, this is mommy's medicine, and this is what Bobby needs to do. And now I explained to her what a pancreas is, and you know, things that I definitely didn't learn at her age. But you know, I want her to know, I want her to be informed too. And I want her in order for her to be proud of me. She needs to be informed as to what I go through. And I want her to see me dealing with challenges and rising above it. The Diabetes community is incredibly supportive, and whether you know, the Gvoke Hypopen can be used for folks, age 2 and up. So that's a wide swath of our community and Gvoke.com is a great place for more information. That's where the total story is, including any side effects information and safety language. Stacey Simms 14:51 And then the last question is just what are you looking forward to in 2022? You've already accomplished so much you listed all those things that keep you so busy. Robin Arzon 14:58 I'm very excited. about the launch of my children's book, it's my first children's book strong mama. It is a love letter to my baby girl. And it really puts the focus on a caregivers self care. So let's remember that we have to prioritize our self care. It's not selfish, whether your parents or not take the time for yourself. Because yes, that burnout is real. And we have to go inward sometimes in order to give Stacey Simms 15:21 outwardly but like hope when it comes out, you'll come back on and share. Robin Arzon 15:24 Oh, that would be great. That would be great. Nice. Nice to see you today, Stacy. Stacey Simms 15:28 Oh, my gosh, thank you so much, Robin, I appreciate your time. Have a great one. You're listening to Diabetes Connections with Stacey Simms. More information about Robin a full transcript and the links to Gvoke and to the video are all at the homepage at diabetes connections.com. I am going to follow up with her hopefully, she'll come back on in a couple of weeks to talk about her children's book and answer more of your questions. I mentioned at the beginning of the show that Benny asked me to try something new. So let me just set kind of set the table about what's been going on here, especially if you're new to the show. So Benny was diagnosed in 2006. Right before he turned two, he is 17. Now, and so he's had diabetes for really just over 15 years. For the last two years, I've really tried to slide into doing less and less and less to the point where in October of 2020, I turned off all of my Dexcom alarms except for urgent, low. And after a big trip he took the summer he went to Israel for a month with a non diabetes camp after he did well with that. I said to him, Well, what do I do now? Right? What do you want from me? How can I help you? Am I here just for customer service? Right? When you want me you contact me, not the other way around? And he said that that's what he really wanted to do. Have I been 100% successful at that, of course not doing nag him here and there to bolus or if I see something wonky? Of course, is he doing? Well? Yeah, he's doing really well, except I'll be honest with you. He's not as diligent. He's not as on top of it. And he wouldn't mind me saying this, as he was when I was diligent and on top of you know, and as you're listening, if you're laughing, if you're an adult with type one, or if you're a parent of an older child, or young adult with type one, you have gone through this, I've gotten a lot of reassurances from my friends, the diabetes community that as long as he's not doing anything dangerous, and he certainly is far from that he's doing great that the way I would do it is not gonna happen anymore. It's up to him now, which is really, really, really hard. So here's what the challenge came in. About a month ago, I pointed out to him that, you know, he was missing some boluses. And he wasn't paying attention to things as well, you know, we had like a, it was a moment where I said, can I talk to you about this? And he agreed, and we had a really good conversation like we do every once in a while. And he said, You know what, Mom, I'd like you to try to remember every time you eat to do something, and I said, Yeah, but after 15 years, like how can you not know how can you not do this? Right? I mean, every parent has said that or thought that right? So he said to me, okay, every time you eat anything, I want you to text me. I said, Sure. No problem. I always have my phone with me. That's gonna be easy. And you know, he rolled his eyes. And he said, we'll say, so the first day, I text him every time I eat three meals, you know, a billion snacks, whatever I'm eating, I text him every time. The next day. I text him. I'm not even really thinking. I text him at dinner. He was at work. He texts back “Is this the first time you've eaten today?” with assorted emojis. And I went, Oh, my God. I did not text him for breakfast. I did not text him for lunch. I hadn't even thought about it. I completely forgot about our bet. And I said, Okay, not fair. That was just day two. It wasn't that I forgot to quote bolus while I was eating. I just forgot that we had agreed to do that. He said, Okay, I'll give you another couple of days. Well, the next day, I remembered breakfast, I forgot lunch. So he wanted me to keep it up for two weeks, which was our original agreement, I felt that he had proved his point after a day and a half, really. But I kept it going. And I did better. But I really failed at it. Was that a lesson with universal implications? Probably not. I bet you'd be a lot better at it than I was. I don't know why I couldn't remember. I don't know what I was thinking. But between the two of us, it was a fantastic lesson. And it was such a great way for me to see how even after all this time, you know how difficult this is how tough it is to be perfect. And you know, as you listen, maybe your lesson is, well, that means that you need to set more reminders. And be on him more. I mean, everybody, I guess would take this a different way. The lesson to me was: have a little bit more empathy, and have a lot more respect for the way he is doing it. Well, I mean, we're not talking about a kid who's ignoring his diabetes, and you don't like I don't talk about numbers, but we're talking about an A1C that's, you know, maybe a couple of tenths, maybe a half a point higher than it was last time. And we're already seeing numbers that I never thought we'd see when he was in the teenage years. If you'd asked me, you know, years ago, thank you control IQ. Thank you for a kid who is responsible. So that's a long way of telling this story that I really got a lot out of so as you listen, if you're a parent, talk to your kid, maybe this is something you can do if you're an adult nodding your head saying yes, Stacy, we could have told you that's what would happen. You know, thank you for your patience. But I got a year and a half before Benny goes off to college. That's it. He is beginning his second semester of junior year. And I think most of these lessons, frankly, are for me. So boy, I hope I'm learning. All right, we do you have a newscast this week, that is Wednesday, live at 430, on Facebook, and YouTube, and then live on Instagram at 4:45 different times, until these services decide to play nicely together. And I can do them all at once. But right now, Instagram will not let you that's why there are different times for that, but we turn it into an audio podcast that you can listen to on Fridays. And then going forward, we're back to our regular schedule with the long format interview shows every Tuesday. I am hoping that we're gonna have a lot of technology to talk about this year. We do have some great episodes coming up with the folks at Tandem. We've got an update from Dexcom, as well as some interviews with newly approved products and products overseas that are going to be submitted for approval in the US this year. So a lot to work on a lot to come. I'm really excited about 2022 Not just for the show, but for what I really hope the community starts seeing when this logjam of COVID approvals or COVID, delays at the FDA starts loosening up and walking through so fingers crossed for that. Thank you as always to my editor John Bukenas at audio editing solutions. Thanks so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then be kind to yourself. Benny 21:29 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

When you have a national lead on diabetes who really seems to listen to patients and delivers on some big ideas, you get our attention. Dr. Partha Kar is the diabetes co-lead of NHS England. We talk about access, getting more out of your doctor's visits and what he sees in the future of diabetes tech. Dr. Kar's announcement (after our interview was taped) that CGM or Flash Glucose Monitoring will be available to all people in England with type 1 diabetes  This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription Below:   Stacey Simms  0:00 Diabetes Connections is brought to you by. Dario Health – Manage your blood glucose levels. Increase your possibilities. By Gvoke HypoPen, the first pre-mixed autoinjector for very low blood sugar. And By Dexcom. Take control of your diabetes and live life to the fullest with Dexcom This is Diabetes Connections with Stacey Simms. This week when you're a national leader on diabetes, and you really seem to listen to patients and you deliver on some big ideas, you get our attention. Dr. Partha Kar says it shouldn't be that unusual.   Partha Kar  0:39 And I also feel that clinicians sometimes believe that people living with type 1 diabetes won't be able to handle the truth, so to speak, oh, you can't tell them when you can. They're all adults are surrounded by adults, and they deal with tough calls in their lives all the time. You know,   Stacey Simms  0:57 Dr. Kar is the diabetes co-lead of NHS England. Yes, this is a US centric show. But I've followed him on social media for a long time. And I've loved what he has to say. We'll talk about access, getting more out of your doctor's visits, and what he sees in the future of diabetes tech. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, I am your host, Stacey Sims, and we aim to educate and inspire about diabetes with a focus on people who use insulin. If you're part of our mostly American audience, I hope you had a really good Thanksgiving, I hope the travel was safe. If you had to go anywhere, I hope the food was great. And I hope the family was okay to really hope you had a great holiday. If you're part of our international audience, which is still pretty big, I would expect it to be bigger this week, just because of who we're talking to. And that is Dr. Partha Kar, national specialty advisor for diabetes with NHS England. And this is one of those times where I just was interested to see what somebody had to say, as I mentioned in that the opening teaser, I followed him online for quite a while. And I thought you might be interested as well. And boy, when I put it in the Facebook group, you all were thrilled. So I hope you enjoy the interview. He didn't have a ton of time to talk to me. But that is to be expected. But I'm really happy with the questions I was able to ask. And you know, just the fact that he was able to share some information with us, even though his his health system is is markedly different than ours here in the States. Before we jump in, I do want to take a moment this is a little self promoting. But gosh, guys, I got such exciting news recently. And that is that I won this huge book price. Yes, I know the book came out a while ago, but I won best new non fiction in the American Book fest. This was of course for the world's worst diabetes mom real life stories of raising a child with type 1 diabetes. And it kind of took me didn't kind of it really took me by surprise. I had entered it earlier this year, I had forgotten about it. When we got the email, my publisher kind of emailed me quickly and said, you know, being a finalist is really nice. And then she said no, no, wait a minute, you. That was kind of my reaction to it was laughing. But I won. So I know you're asking, Okay, the world's worst diabetes mom came out in 2019. How did we win an award in 2021. The book fest the American Book, festival boards are kind of rolling. So you're eligible for almost three years. So this year's books were from certain dates in 2120 20 in 2019. This was our first time entering the book, and it was actually our last chance to enter. So boy, I'm so excited. I'm really proud of the book. And I have some news coming in December. I have some more book news that was already planned before this award. But thank you for letting me indulgent, do a little patting myself on the back. It was not easy to write and get it out and do everything we needed to do for it. And boy, you all have been so supportive, considering I haven't been able to do any kind of book tour at all right? I mean, it came out at the end of 2019. I think I went to two or three places. And that was it. And just like everybody else in 2020. It hasn't been the same since I'm hardly alone in that. So more book news coming up, and Dr. Partha Kar in just a moment I should probably tell you just a little bit more about him if you're not familiar. He has been a consultant in Diabetes and Endocrinology on the national level there in the UK since 2008, clinical director of diabetes from 2009 to 2015. And here's the full title national specialty advisor diabetes with NHS England. And there are so many things that he's been involved with, most recently, very prominently getting the FreeStyle Libre being available across the country over there and I will talk about that specifically. Being very involved in language matters. Getting CGM available to all t one D pregnant patients. And he hinted this week that a big announcement was coming. So I will link that up in the show notes so you can find out we talked The week before Thanksgiving here in the States, so timing wise full bit tricky, but he was announcing something big and I will include that to the best of my ability. Okay, Diabetes Connections is brought to you by Gvoke Hypopen. Almost everyone who takes insulin has experienced a low blood sugar – and that can be scary.  A very low blood sugar is really scary. And that's where Gvoke HypoPen comes in. Gvoke is the first autoinjector to treat very low blood sugar.  Gvoke HypoPen is premixed and ready to go, with no visible needle. That means it's easy to use. How easy is it? You pull off the red cap and push the yellow end onto bare skin – and hold it for 5 seconds. That's it. Find out more – go to diabetes dash connections dot com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma – visit gvoke glucagon dot com slash risk. Partha Kar Welcome to Diabetes Connections. Thanks so much for making some time for me and my listeners. Absolute pleasure. Thank   Partha Kar  5:55 you for asking.   Stacey Simms  5:56 I gotta tell you, I'm a little nervous. I'm a huge fan. I'm just following you on social media. And then I put into my Facebook group like I always do. You know, do you have any questions for this guest? We've got a part of the car coming up. I have very few questions from the group. But I have lots of oh my gosh, I love him. Tell him we love him. Tell him. Thank you. Thank you. And I'll tell you specifically why they're thanking you in a moment. But you do have a quite a big fan club over here. So going in, I guess I'm trying to butter you up. But going in, you should know that.   Partha Kar  6:24 No, it's very quiet, very kind. I always see this, you know, at the end of the day, it's my job to do as well. But you know, the love and blessings you get is just makes it stronger. So yeah, no, absolutely. Thank you.   Stacey Simms  6:35 You're welcome. Let me just start off by asking you, you do not live with diabetes? How did you get into the position that you were in today? Why this field for you. So I think   Partha Kar  6:43 a lot of it was, you know, when we are when we are training, you pick your subjects as you go along. And then I sort of gravitated towards Diabetes and Endocrinology because I thought there was an opportunity here to talk to a lot of people, you know, be a part of their journey throughout life. So it was quite good. And I like talking, and then sort of more towards type one, because I think I get got to realize the more senior I got a lot of attention, quite understandably, was into type two diabetes. And that's, you know, the bigger volume number, etc. But I think what I found that there's not a lot of things being done for type one as a trade back of that. So it's been more of a, let's see what we can do in the space. Let's try and help people. And I think just being an advocate, so to speak. So yeah, that's probably how it's graduated over the course of time. One of   Stacey Simms  7:31 the things that we've observed, just following your social media here in the US, is the adoption and use of libre for many more people, can you talk a little bit about how that came about?   Partha Kar  7:41 So I think Libre, I'm in freestyle Libre first came into the market on 2014 2015. And I think it started to sort of gradually make its way into the UK setting and the sort of people would buy it funded. And I think it sort of started taking off in 2016 2017. And that's when I sort of got into the job. And for me, people are always asking why this particular device, I think it's not the device, I think it's more of a mass device. And I think there'll be more competition coming along. But to me, it's be a very good example of what self management can do. I mean, simply put, if you see more of your numbers and more of your trends, you tend to intervene more and do better. So that's been the device and it's been a battle to try and get it into people's lives as you go along. As you're the system here is slightly different. You have to justify every single thing you do, because you're saying, Well, this is why we're trying to do it. And it's a funny place to be in because you know, you're you're sort of fighting, so to speak against other conditions, that doesn't feel right, either trying to justify why you needed more compared to X or Y. And I think that's the challenge. And then people start looking at well, actually, there isn't a randomized control trial, which showed y or Zed and I can't fund it. And I try and explain to people it's not just about the RCTs, or the randomized control trials all the time. It's not just about doing one see, it's about the quality of life and what it does do so yeah, I think I think that's how it came about. And then driving it through, pick up or take up around the country sort of battling with regions. So yeah, it's it's been a journey in the half, so to speak. Can you   Stacey Simms  9:14 get a little bit more specific in terms of how many people now in your system do have access and do use the freestyle?   Partha Kar  9:20 Yeah, I mean, I think we got I mean, given round, figure wise, we've got about 200, we got a quarter of a million people with type 1 diabetes, and I think about 53% of them are on it right now across the country, and of all our cards land. Well, I think it should be available, either, you know, Libre or its equivalent should be available to everybody, everybody, very soon.   Stacey Simms  9:42 So yeah, I mean, the reason I wanted to ask that is because first of all, it's already such a big number comparatively speaking too much for the rest of the world. Certainly, I've got to imagine you're starting to see better outcomes too. Yeah,   Partha Kar  9:53 absolutely. I mean, it's coming through your h1 HB ones is a better I mean, I can tell you from my own clinical practice, people are huge changes. We're seeing it across the country and the data we're collecting and guess what admission levels are down. People feel happier your HP once he's down, it's doing what it says on the tin.   Stacey Simms  10:08 What would be the ultimate goal? Is it with that device? Is it then moving on to other CGM? Or do you want to kind of get as many people as possible in this one?   Partha Kar  10:15 Oh, no, absolutely. I've always maintained I'm a Libre or freestyle Libre is has been the tip of the spear. I think there was a lot of things there, which was about showing people the what is possible, because before that, in the world of the NHS technology has always been seen as a Okay, well, let's see what we can do. I mean, for example, insulin pumps have been around for so long. We even had nice guidance on it available since 2008. But the pickup rate really low 15% 16%. Really many reasons behind it. And CGM for isn't traditional CGM like Dexcom. Really low again, 4% 5%, or there abouts. But I think this was about showing what could be done if you really pushed on it hard. And I think it's opened up many, many doors. You know, subsequently, because of that, we're looking at competition coming along, we're looking at every single pregnancy with type 1 diabetes not having access to a Dexcom, or Medtronic device, we're doing trials and closed loop, suddenly, it has become a flagship, and due to luck, serendipity or default, it's worked out as one of the projects, which has really, really played out well in the NHS. And so a lot of people are looking at it. And for me, that was always the purpose. It's the tip of the spear. If you can show you could do it with one, there's no reason you can't. And it's definitely not the end goal never has been. I think the end goal would be that every every person with type 1 diabetes, irrespective of the age has the ability to choose whatever technology they so can, whether it's flash, whether it's traditional CGM, whether it's a pump, or whether it's a closed loop, partnership salutely.   Stacey Simms  11:44 And I'm just a little bit more about the Libre, I'm curious to obviously the biggest objection many people would have had would have been cost. But inside your organization or external critics, what were their objections thinking going into something like this,   Partha Kar  11:57 I think the NHS always is a very traditional setup. And I think they're very good when it comes to drugs to pharmaceutical products. For example, pharmaceutical companies will do massive randomized control trials to show Okay, here is the drop in HBO and see, and thereby you can calculate it. The problem is with technology company, they necessarily haven't done that. If you look at Frisco Librem, the initial studies that came out, they never showed any change in HB one C, primarily because they chose a lot of people's age 20 with the excellent to begin with. And you're sitting there going, Well, that was a mistake, I think, for companies not to take up the trials, because straightaway to a lot of policymakers, you don't have any room to maneuver, because you're banking yourself completely on the ability that will show improvement of hypos and quality of life. Now, the other problem, I suspect has been there nice, which is our governing body, so to speak, who you know, looks at evidence, they're quite slow at coming off the blocks. Sometimes it can be too late in the technology world by the time you assess, you know, right now they're assessing Libre one you are Libre 123 out. So what are you assessing? There's got to be nimble and quick. That's been that was the obstacle people saying that. So I think there were that level of obstacle Well, nice having said so so why should be, there's also a lot of people who fundamentally believed that this was just a gizmo and this was just shiny toy, and we shouldn't give it to people with diabetes, they should or for example, they had to earn it, you know, they have to either have complications to have it, or they should be testing 10 times a day to get it, which I think is pretty silly. Because you know, the whole point of doing this exercise is to target people are finding it difficult to test and find giving it to people to stop them from having complications. But there you go, it's a very traditional set of thinking, which is what has been the challenge trying to break through?   Stacey Simms  13:39 Yeah, do we have similar issues in the states where they're doing trials? And you always see like, well, they're a one see went from 7.3 to 6.9. And that's wonderful. But you know, we need to reach the people who's a one sees our 10.5 100%, right, because of either education or access, or whatever it is. I know, I know, you're struggling with that as well. Yeah,   Partha Kar  13:58 So, for example, you know, we have learned from that, you know, we, when we collected the real world data with Libre, we showed exactly what he said, the higher the higher your starting age, we want to see the better your outcomes. And you're like, Well, that's obvious. So what we're doing with those with Kevin, so what you're doing with closed loops right now, so we're running a real world trial evaluation throughout the country, it's about 34, five centers around the country, adults and pediatrics doing it. And guess what we see, again, the higher your agency, the better you're a flattening of your agency. So it's not rocket science. And I always am flabbergasted when people doing trials go like, no, let's just pick the people's controller really good. And as you said, but that goes against the whole deprivation thing that we discuss about because we know people who come from very deprived backgrounds will have worse control. So if you really want to tackle deprivation, you need to control that and you need to tackle that. So the thinking needs to be far more refined than what it is at the present moment. And hopefully we're trying to show some ways of doing so.   Stacey Simms  14:54 So one of my listeners said, I want you to please let parked the car know how much I appreciate In his posts, she goes on to say, there's not much I appreciate more than medical professionals who treat us like real people and don't talk down to us. Where did you learn your bedside manner your style or what you know what we as as not your patients see on social media because that's one of the things I think that very much resonates with people is that you're you're very plain spoken and you don't talk down to people with diabetes   right back to our conversation, but first Diabetes Connections is brought to you by Dario health. And you know, over the years, I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you, all the strips and lancets you need delivered to your door, one on one coaching. So you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you. And for you. Dario is published studies demonstrate high impact clinical results, find out more go to my dario.com forward slash diabetes dash connections. Now back to Dr. Kar, talking about how he has developed a good bedside manner and respect for his patients.   Partha Kar  16:20 I think it's come with time, if I'm very honest, and most likely, it's not like a suddenly over a bed. And one day I decided to become like this. And I think what I've realized over the course of time is their Medical School doesn't teach us consultations, kills diseases, a lot of stuff, right? It's just teaches us what the book said, which is my Insulet physiology, how it works, doesn't really teach us a lot about interaction with human beings, which is what we did with some things like the language matters and stuff and people found language matters. Interesting. I found that just human sense, you know, common sense, human, it's not that difficult to be nice to people. And we somehow are not we somehow, and I think social media teaches me a lot of stuff. I think my patients teach me a lot. And I don't say that in a glib way, because things like, you know, I will do transitional or young adults clinic. And I remember these words from this young girl who sat there looked at me and said, If he took an exam sometimes, you know, and I want to watch that. And she said that, I don't know. It just feels like I'm going to be asked what I'm doing with judgment, what I'm doing, you know, when I sat down, but like, that's not right, that's wrong. Why are we making people feel like that way? And then we are wondering why they're not coming back to our clinics. So a lot of my consultations were very honest, not about diabetes, with my patients they're very much about could be a football or movies. I mean, yesterday, when just watch the internals and today in clinic, we were talking about one of my patients, and that was the conversation, what did you think about that paid the post credits, what was it, and I think you build a rapport with people, they trust you more, you get along more. So I like to keep it very plain. And I also feel that clinicians sometimes believe that people living with type 1 diabetes won't be able to handle the truth, so to speak. Oh, you can't tell them when you can. They're all adults and or, or in or surrounded by adults, and they deal with tough calls in their lives all the time, you know, how to get a mortgage, you know, how to get your car or dealing with ups and downs, or the Why wouldn't they be able to they live with it. So I've always benefited that by turning around and saying I can't do this for you. It's outside my expertise. And I think finally, I'm also trying with my other role trying to deconstruct the myth, and the and the whole thing that doctors are built around them so that there's some sort of, you know, material human beings here for to burn themselves to the altar, normally not, you know, we trained professionals, like a fireman or a policeman and trying to do my best. And sometimes I'll get it wrong, sometimes I'll get it right. But at least I want to portray across that I'm trying and trying my best. And we'll see where we go from there.   Stacey Simms  18:50 You know, it brings up an interesting point, because I consider myself a very strong advocate with my doctors, for myself and for my children. But I still hear you get intimidated, you do very much respect my doctors, any advice for patients who who want to have a difficult conversation with their physician who want to start broaching that, hey, treat me like a partner and may not know how to start?   Partha Kar  19:12 Yeah, I mean, I think it's really difficult. It's really difficult to do that. Because I think this is why it's a bit like I always give the example of let's say, sexism. Now. It's not the it's not just the job of women to go and solve sexism, is it. I mean, it's men have got an equal part, you will not understand nuance as a man or a woman goes through, but you know, when it's wrong, and you can turn around and say, Nah, guys don't do that. Right. So I think what I would encourage rather my clinical colleagues to say that, look, it's not tricky to sort of have that feedback and saying your approach may not be the right thing. And I think this younger generation coming through which does that. So my advice to patients who would like to do that would be to, I think doctors feel very challenged as soon as you challenge them. It's an ego thing. Don't forget that we have been taught in medical school that we are the top of the top there is no Nobody better than us, right? When you're told that for five years, seven years, eight years, 10 years of your life that there was nobody better than you, it's very difficult to then sit in a space. And if somebody challenges you to actually take that on board, so there is a bit of that complex that has happened over the course of time. So the way to approach that would be to probably do it from a slightly different angle. And rather than pointing out the mistake and say, What would you say? What do you think if we did this? Do you feel like so I think you try and do that there'll be some people who are open to the idea of saying, I don't agree with that, and you go with it. But I think the biggest advice I can give is find an ally, was also a clinician who will do that for you. So in meetings, when I go to, I always see myself as that sort of advocacy role return rentable. And now I don't agree with that. Because I know I've spoken to a lot of people who want to agree with that. So that is the sort of fine balance to strike, it will change, doctors are changing. And you know, if you've been long enough in the system, the 90s, were different to 1000s were different, and now is different, but doctors are evolving slowly takes a long time to get you got good get rid of you got complex.   Stacey Simms  21:02 Another question from one of my listeners who wanted to know, Brexit to will, or already has had an impact on diabetes care or supplies,   Partha Kar  21:11 hasn't affected supplies, because we actually knew there was going to be a problem. So we planned and we worked with the industry to make sure we had good suppliers. And there will always be teething trouble as we go along with this. But no, we don't expect, he says Fingers crossed. We have some plans in place in case of anything, but Brexit is one of those political things in life, isn't it? So we just have to ride the storm with it as we go along. So   Stacey Simms  21:34 this is an American based podcast, mostly because I'm American, we do have listeners all over the world, which I'm very, very grateful for. But our healthcare systems are so different. I'm curious if you have any advice, or any lessons that you think we could learn from how how you all do it?   Partha Kar  21:53 Yeah, I mean, so I think the debate about healthcare becomes incredibly emotive on both sides of the Atlantic. I think that's the problem. So when you turn around, people start saying, so for example, if you challenge the NHS, people go like, well, you don't like the NHS, because you want to make it privatized to you. And you will? Um, no, not really, I'm just saying that there are gaps in the prison system as we fund it, for example, we say it's equal to all well, not really, if you come from a deprived community. Right, now we've got issues with race. So as I've said, if you're a black child, your chance of getting a continuous glucose monitor is half of that of a wide shot. This isn't the NHS which professes to be equal to everybody. It's not right. So the challenge is there, even however, the funding is, I think my advice to in the US setting would be it's so vast and so big. Taking aside the politics, which is so difficult to do, obviously, I think too much attention is focused when it comes to chronic disease on the to the three parts, which I think of type 1 diabetes, I think I see it as self management, peer support, and access to train professionals. That's the three things on which good type 1 diabetes care sets. And the US system is incredibly good about doing number three, too, it makes it more and more expensive, because we don't have any trained professionals. And so you end up having to really top load that bit. If you switched a lot of the attention to one and two, self management with technology of peer support, you probably will have better outcomes, I don't think it's about the make of the system. And it's insurance based or public funded. And that's where the politics comes in. It's about the switching of that mentality where you get peer support and self management as being a main key focus and investment into but the US system, partly the UK as well. But the US system hinges heavily on number three. And that's why you the costs are so out of control. That's my view, at least   Stacey Simms  23:38 we've seen it in our own experiences. And people who listen to this podcast know that that peer community matters immensely with camps and communities and meetups. And it's incredible. It makes such a difference. Absolutely. You mentioned language matters. Can you speak a little bit about that for people who aren't familiar? Yeah, I   Partha Kar  23:55 mean, I think there's a fair few versions of that. I'm the principal of that was built in Australia in 2012. And again, it's nothing dramatic. It's not I mean, became it basically saying just be nice to people. You know, I think you've got embroiled in this whole debate for a bit of time. Because it was done in the States. There was papers out of him that we picked up in the UK, different countries have done it and people get stuck up in the Oh, is it is it about calling somebody a diabetic or a person with diabetes, it's not lots of people don't mind being called diabetic, some people do mind being called diabetic, that's not about that what the document is about. The document is very, very simply about trying to be less judgmental about people whose lives you don't leave. Right? If you're saying to somebody, or you know, I'm not sure you're you should be doing that in the morning, when you don't know what like the lead. You don't know that they're having to, you know, rush to drop off their kid to school and do this and do that. It's not easy to then go you should have a very structured breakfast and take your insulin on time. Well, that's fine for you to say, but that for that individual. They might have two kids to drop off and then go to work while trying to make sure you know their husbands had their work. It's It's not easy. So I think that's what it's about don't don't try and judge others whose lives you don't leave lid. So that that was pretty much it.   Stacey Simms  25:08 I think that the libre goal that you have I know you're not done with and you wouldn't call it a an ultimate success yet has been tremendous. What is next? Is it trying to get more pumps covered? Is it trying to get more equality as you've already mentioned, racial and economic lines,   Partha Kar  25:23 closed loops, I think I think is, is the is the next target, I think more more access to closed loops, more access to all the types of different loops that are available, and you touched upon it, irrespective of your deprivation, ethnicity, that's going to be huge for because going ahead, I want more people to have access to technology, because I think technology is an enabler sort of ticks, that box of self management, it also encourages more peer support. So if we did that, together well, and did more standardized training for healthcare professionals that I think that's the sort of ultimate goal. But I think closed loops are going to be the thing I suspect the focus and target on as we go ahead.   Stacey Simms  26:01 Fabulous. And I'll let you go. I know you got to run. But we are speaking during Diabetes Awareness Month, and you put out a video very plain spoken as you do, saying, basically, be nice. Don't judge, don't be an idiot. And you have a two minute long video explaining this. What was the reaction? I mean, it's a very plain statement, but at the same time, it's quite blunt. Yeah, I   Partha Kar  26:21 mean, I think I see the debates between and it's so silly, some of the stuff that goes on, on social media and wider and I can understand people do it because they have a book to sell, or a podcast or blog or whatever they want to do, or Twitter likes, but the simplistic narratives and never helped people, you know, we could we could turn around and say, Well, if you eat too many cakes, you will have type two diabetes, there is not a single evidence base that will support that statement. Yes, people say that right? You know, and I think that's the problem. And then that rolls into how did your child have diabetes? You give them too many cakes, and you sitting there going like what how uneducated Are you didn't come up with a statement like that. And it's so frustrating to see that. So I think the reaction has been good. I mean, I've always been known for my and I genuinely think when people don't know something, I'm very happy to explain it to them in today's day and age. If people say that, Oh, I didn't know that type 1 diabetes is an autoimmune disorder has got nothing to do with your diet or your lifestyle, then I'm sorry, you were just uneducated. And that's my bottom line to that. So you haven't even made the simple effort to open Google. So things like that. And I think that was the that was the idea of that is Diabetes Awareness Month. Just be aware of different types. Be nice to people don't judge others and you know, at least at least do some research and you've got Google on your smartphone. So simple.   Stacey Simms  27:41 Okay, last question. You mentioned the eternal is no spoilers. I haven't seen it. But I know you're a big Marvel fan. How was the movie?   Partha Kar  27:47 Oh, it's good. I really enjoyed it. It's as a standalone, it works really well. And my only big tip also is mistake for the after credits. Very good, especially the last one. Very, very good. All right.   Stacey Simms  27:58 Well, thank you so much for spending so much time with me. I really appreciate you being here. Thanks very much. Partha Kar Pleasure.   You're listening to Diabetes Connections with Stacey Simms. More information at diabetes connections.com. Of course, there's always a transcript as well. I will link up how to follow Dr. Kar on social media, I highly recommend his Twitter feeds. And he is just very informative, very straightforward. And he's always willing to admit when he makes a mistake or something funny happens. I mean, he's just let's face it. He's just a human being online, which is why I think so many of us respond to him so well, that I liked a lot of the advice he gave there for us to take to our doctors, we really have to be straightforward with them. So many times they don't even realize what they're doing or how they're talking to us. Sometimes they do and they're they're just jerks. But most of the time, I think they want to have a good relationship with us. At least that has been my experience. There's only been one doctor, in my my experience. I'm not talking about Benny, because we've been very lucky with him. There's only been one doctor that I have fired. And I fired him from my hospital room because oh my gosh, was he talking down to me? So don't be afraid to do it. Alright, Diabetes Connections is brought to you by Dexcom. And we were watching TV the other night. My husband and I are really into the expanse now, which is a sci fi show that's been out for a while. We are totally binging it, we're going through every season. So we're watching that. And the Dexcom went off the alert on my phone and Benny was upstairs in his room. And you know, for some reason, it took me back to the days when we basically had blood sugar checks on a timer. If you're of a certain age you remember this we would check doing a finger stick the same time every day at home and at school and whenever extra we needed to. It's really amazing to think about how much our diabetes management has changed with share and follow. I didn't stop the movie to check on him. I knew what was going on. I mean, I could decide whether to text him or go up and help out for this instance. I did absolutely nothing because I didn't need to using the share and follow apps have really helped us talk less about diabetes. which I never thought would happen with a teenager. Trust me Benny loves that part too. That's what's so great about the Dexcom system. I think for the caregiver or the spouse or the friend, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow separate follow app is required. learn more, go to diabetes connections.com, click on the Dexcom logo. If you're listening as this episode goes live, Happy Hanukkah, we will be marking night three as you're listening again, if you're listening when the episode first airs, and Paul hits early this year, that my daughter's already packing school, but that's how it goes. I hope your life because they're yummy and your Hanukkah guilt is delicious. And you're not stressing out too much about diabetes, and you're able to enjoy what the holiday has to offer. Looking ahead. I mean, what am I going to say? Here? We are December. Oh my goodness. So we've got some great shows coming up. We've got a conversation next week with the folks at convatec. They make all of the insets except for Omni pod. But if you use a Tandem Medtronic, yep, so mid, those pumps, they make your insets. So we had a really good conversation about how to make those better, some good information for the community from them. And I'm hoping that'll be an ongoing conversation. And we have a lot of good stuff in the works for the rest of this year. Going into January, does he I would ask is if you have listened to this far and you are not signed up for our newsletter, please make sure to do that I send out an email every week along with the show. And quite often there is more information in there than just a week's episode. We do surveys, we do research opportunities that I get from companies. There's a lot of info in that. And as we move forward next year, and I'm branching off into other projects, I'm gonna be using that newsletter to communicate more and more about things, not just the podcasts that I think are of your interest, but I don't spam you or anything dumb like that. So go ahead, you go to diabetes connections.com a little pop up will come up. If you don't see it, just scroll down. There's a little newsletter thingy that'll help you sign up there. Thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening. We are back on track for our newscast this week. So I will see you back here Wednesday on Facebook or YouTube Live for in the news. And then on Friday, we turn that into an audio, podcast whatever works better for you. Feel free to join me in whatever way is the best. I'm Stacey Simms Until then be kind to yourself.   Benny  32:24 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

With Thanksgiving almost here and the winter holidays around the corner, we know that diabetes stress is about to ratchet way up. The D-Moms are here to help! Moira McCarthy joins Stacey to talk about everything from holiday travel, long car rides, well meaning relatives and holiday gifts centered on T1D. And of course, FOOD! Get advice to keep your children with T1D safe and happy so you can make terrific memories without freaking out about "perfect" blood sugars. Previous D-Mom Holiday advice here Adults with T1D give their take on the holidays:  This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription below:  Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first pre mixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:20 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:26 This week, Thanksgiving is almost here and many holidays just around the corner. Ask the D moms is here to help more McCarthy and I answer your questions and share our own stories to help you make more wonderful memories with less stress, even if that means doing things differently for a special occasion.   Moira McCarthy  0:44 And the reality is in this long, long, long, long, long lifetime marathon diabetes, you need to just chill a mile here and there. And by doing this and saying to your children, we're going to turn this off. This is okay. Don't worry about it. You're fine. You're modeling that for them and you're giving them the confidence and the courage to know that they can be okay. Yeah,   Stacey Simms  1:06 she said turn this off. She's talking about something I dare to say and do about Benny's CGM. We also talk about long car rides well-meaning relatives and holiday gifts centered on diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm your host Stacey Simms always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. And yes, this time of year. I mean, it's the holidays are stressful without diabetes, right. But I'm already seeing in my local group, the stress ratcheting up, somebody said to me the other day that they feel like even though they're not necessarily doing more than they did before the pandemic as more people are venturing out and traveling. They feel like they're really busy. And I think a lot of it has to do with the fact that we haven't been very busy for the last year and a half, really. So there's gonna be more pressure on this holiday season. There's going to be more travel, there's going to be I don't know, it'll feel like higher stakes and especially if you are new to type one, that first year those first holidays, those first milestones are incredibly stressful. So Moira and I are here to help you out you probably already know. But just in case Moira McCarthy is a dear friend of mine. She is the author of many books about raising kids with diabetes, including the amazing raising teens with diabetes, which has that fabulous photo of a teen rolling her eyes right on the cover. I love that cover. You'll hear how long her daughter Lauren has lived with type one. She's a very successful adult now living on her own. And if you are brand new, my son Ben, he was diagnosed almost 15 years ago. He is almost 17, which is really hard to believe so most of my stories have to do with the early years. We're not out of the teens yet, and Moira will help kind of pick it up from there. And I always look to her for guidance as well. One funny thing about Thanksgiving this year, we have a set menu, right? We have our traditions. My husband is the cook in the family and we've always hosted Thanksgiving. He does something a little different every year, but it's really up to him. But Benny has been working in a grocery store for the past six or seven months now. And he is really jonesing for a sweet potato casserole with marshmallows, which we don't usually do nothing do with diabetes. It's just not our style. We generally save the marshmallows for dessert. But my mom who makes our sweet potato casserole every year has valiantly stepped up and says she will make one for him. Because at the grocery store. He has been seeing the display and he's like Mom, it's just sweet potatoes, brown sugar, sweet potatoes, marshmallows, sweet potatoes, brown sugar, like they have this. And he took a picture that I saw the last time I was there. I mean, it's one whole side of a produce display. So this poor kid, he is really dying for that that marketing worked on him. He wants those marshmallows. My daughter is the canned cranberry sauce person, right. You know you make that beautiful, homemade cranberry sauce with the whole cranberries. Are you you boil it down? No, we have to have it in the can with the jelly lines on it. I prefer that as well. I have to admit. Alright, Moira and I talking about real stuff just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. Our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing – we're usually able to treat those with fact acting glucose tabs or juice. But a very low blood sugar can be very frightening – which is why I'm so glad there's a different option for emergency glucagon. It's Gvoke Hypopen. Gvoke HypoPen is premixed and ready to go, with no visible needle. You pull off the red cap and push the yellow end onto bare skin – and hold it for 5 seconds. That's it. Find out more – go to diabetes dash connections dot com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma – visit gvoke glucagon dot com slash risk.   Moira, welcome back. I am so excited to talk to you What a week. I didn't even think about this when we planned. This is a big week for you and Lauren,   Moira McCarthy  5:04 it is yesterday, October 28. At 2:35pm was exactly her 24th diaversary. My daughter has had type 1 diabetes for 24 years. I can't even believe it. It's crazy.   Stacey Simms  5:22 But I have to ask you the time had you know the time.   Moira McCarthy  5:25 So I don't know why I know the time. We were at a doctor's appointment, and I know what time the appointment was. And I know what happened when I got there. So I don't know. It's just drilled into my head. And then there's people I meet that are like, I can't even tell you what day my kid was diagnosed. But for some reason, it just stuck with me. And as a little kid Lauren, like celebrating every year, so I sent her flowers yesterday. No, I don't care. 24 hours or so give us Do you   Stacey Simms  5:51 mind, maybe just a little bit of how she's doing maybe a little update. If this is someone's first time joining us for Deimos.   Moira McCarthy  5:57 I'd be happy to so my daughter Lauren was diagnosed. Well, I just said the date. So basically the beginning of kindergarten when she was six years old, right after her sixth birthday. I can remember feeling like the world was gonna end. But we had a really great medical team from the beginning who were saying to us, you are going to live the life you lived before. We're just going to add steps to it. And Lauren at six years old was saying I'm gonna lead you're not gonna, you know, let this hold me down. Now has it been all rainbows and butterflies? Absolutely not. We have had challenging days. We've had challenging weeks, we've had challenging years in her teen years. But right now, I think, well, first of all, what everybody cares about most is her physical health. She is 100% healthy. She has the labs that a person without diabetes would have if you checked, you know, her kidney and her eyes and everything else. Emotionally, she's really doing great. She has a long struggle with burnout. But I think she really has figured out a way to deal with that when she recognizes it coming up. And the most important lab of all I always say is she's incredibly happy. She has an amazing career and lives in the middle of Washington, DC all by herself, and I don't follow her on share. And I never worry about her. She has 8 million friends and I couldn't be prouder of her and the life that she is building as a young adult. So that's where she's at pretty good. Right? Despite diabetes, that's fine.   Stacey Simms  7:28 I love hearing that, as you know. And as you listen, you may know, I have followed Moira and Lauren story for many, many, many years since before more and I knew each other. So I always kind of look ahead. It's like my time machine of what could happen with us. Where could he go? And of course, he's never leaving our hometown, going to a scary place far away like DC he's gonna He's going to live here. And   Moira McCarthy  7:51 Sunday dinner every week   Stacey Simms  7:53 is nice. That's so nice. So I'm glad she's doing so well. Like you're doing so well. And you know, gosh, I heard something recently about diversity that made me smile. Instead of the diversity you're you're on the new level. So Lauren has reached level 24.   Moira McCarthy  8:08 I like that. That's really funny. And her boyfriend is a big video gamer so he'll like that.   Stacey Simms  8:13 Oh, that's good. Yeah, Benny's approaching level 15. And I am one of those people who I always have to look up the date. I just know it's the first weekend of December, but I never. Yeah. Alright, so we are in that time of year where it's not just our kids diver series. It is holiday time. And after I rewound the Halloween episode that we did a couple of years ago and I got a lot of questions and people asked us to do a follow up for Thanksgiving and looking ahead to the winter holidays. And I got some great questions. So I was wondering more if you wouldn't mind sharing though, you know, the first holiday season that you and Laura and your whole family had to address this you guys want a very different routine? Yeah, we can be a little more difficult but would you mind sharing what that was like that first year?   Moira McCarthy  8:59 I will and and I think it's good to hear because it can help people see how far we have come daily care for this disease. We may not have a cure yet, but what it looks like on a day to day basis is completely different. So Lauren was diagnosed in October so Thanksgiving was our first big holiday and I remember we were going to my in laws and back then you took a moderate acting or we called it long acting, but it was really middle acting insulin called NPH that peaked a bunch of times during the day and then you took regular which you had to take it wait 30 minutes and then eat exactly what you had dose for it exactly 30 minutes which was super fun with a six year old child I will tell you and no waiting in between. So I had reached out to my in laws ahead of time and asked them if they could work the meal around the time that it would work best for her to eat and they said yes and I I move some things around with A doctor to kind of compromise with them, you know, so we changed what time we gave everything starting, like two days before to be ready for Thanksgiving. And then we showed up and they were like, oh, yeah, we decided on a different time. Oh my gosh, the world is ending. But the world didn't end. You know, we figured it out. We got through it. What I will say for these holidays, for people who are new to it, it's not always going to feel this scary and confusing and daunting. I think the first 12 months, you go through every holiday, every special event, every family tradition for first time. And then the second year, you're like, Oh, I remember this from last year, and it gets a little better. And then the third year, you're, you're sailing. That's my theory, and I'm sticking to it.   Stacey Simms  10:43 I would absolutely agree with that. I also kind of suffered and I'll say suffered from this feeling out of the box, that it had to be perfect. Because I remember one just show everybody that we were okay. Especially my mom, I wanted her to not worry. And know that we were we were just fine. And for some reason that got tangled up in my brain by thinking this has to go perfectly and I can't make a mistake. And of course that lasted about three   Moira McCarthy  11:06 seconds. Yeah, we're really with a toddler with type one, and you want to put together a perfect Thanksgiving. Why don't we do that to ourselves, though, you know, but feelings of control at a time when you feel like you've lost control?   Stacey Simms  11:21 Night? Exactly. Alright, so let's get to some of the questions that came in. I got one in my local group. And this was about travel. And the question was, we're driving along distance. And I guess we could talk a little bit about flying or other modes of transportation. But this particular case, we're driving along distance, you know, six or seven hours to a relative's house. Any ideas or tips for helping me and the question here was about stable blood sugars. But I'm also going to kind of throw in there. How do I make this trip? easier on the whole family? Yeah, I'm I have a lot of ideas that maybe you do too.   Moira McCarthy  11:56 Well. So I guess my first idea would be for special occasions and events, stable blood sugars aren't the most important thing ever. I don't think there's anything wrong with trying, of course, we want to try but the first thing I'd say is if it doesn't go perfectly, that's perfectly fine. I am quite sure if you ask your medical team to help you with the plan. That is one of the things they will say to you. That's the first thing. So I mean, what did you do on long car rides? For us it I don't remember it impacting her blood sugar that much, you definitely have to have snacks in the car and like more than you ever think you're going to need in your life, because you never know when you're going to get stuck in a traffic jam from a car accident or something like that. You know what it is be prepared, and then you don't need it. We tend as a family, not just for the person with diabetes, but for everyone to try to stop every 60 minutes and get out of the car and stretch and move around and breathe fresh air and then get back in. I think that helps   Stacey Simms  12:56 us How about depressive we don't my husband would have fit? No. So in my   Moira McCarthy  13:01 father, he would never do that. That's probably why I do it. I grew up driving from Minnesota to Massachusetts and like never being allowed to get out of the car. So   Stacey Simms  13:10 I would say for us we actually did struggle a lot with long car rides, because we did a lot of trips, especially to my parents in Florida, which is like a nine or 10 hour road trip. And we found that Benny's blood sugar would go very high. Just you know, an hour or two in the car and looking back, it's probably because toddlers never stopped moving. So his insulin dosage was all based on constant activity. So when he was sitting still, just looking back that's my assumption. Also, as you mentioned, you know everybody's eating in the car   Right back to our conversation, but first Diabetes Connections is brought to you by Dario health. And, you know, we first noticed Dario, a couple of years ago, we were at a diabetes conference, and many thought being able to turn your smartphone into a meter. It's pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gets you all the supplies and support you need to succeed, you'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it. And personalized reports based on your activity. Find out more go to my dario.com forward slash diabetes dash connections. Now back to the D mom's and I'm talking about what we did when we realized Benny's blood sugar would always go pretty high in the car. What we did was talk to our endocrinologist about adjusting doses giving more insulin when he was in the car, giving more insulin for food when he was in the car. And that was a real trial and error for us because, you know we have to be really conservative about that you're not going to be changing basal rates by enormous amounts and so it may not quote unquote work the first time you do it, but I think you know we're doing Talking about stable blood sugars, I hope that this person means is like maybe kind of sort of in range. You know, when I see somebody talking about stable blood sugars, I usually think like, it's not going to be a steady line at 95, right? We're just trying to keep them from skyrocketing and staying there. And even if that happens, which happened to us a ton, it's fine, and you fix it. When the baby was younger, and the kids were younger, I was much more mindful about healthy eating. You know, they're 19 and 16. And it's like, they buy half their own food. Now anyway, I don't know what they're eating. But we used to get coolers the big cooler, and fill it with, you know, healthy fruits and veggies and hard boiled eggs and carrot sticks. And you know, and then of course, everybody would want to stop for fast food and ruin everything. Right?   Moira McCarthy  15:39 So I made the assumption, and perhaps I shouldn't have that by stable, she meant within that range. If this mom is suggesting that her child should have a straight line across my answers quite different. I have no idea going on the assumption that what she means is within their range. And my answer was based on that what I meant was, if you go above your range, or below your range, I think it's okay. I don't think that if you're going to celebrate with a family, the most important thing is, is staying in your blood sugar range, I think the most important thing is enjoying the time and loving your cousin's and running around and having fun and staying within a an area that is safe. And by safe. I mean, you're not you don't need to get in an ambulance, I guess. And maybe my advice would be talk to your medical team, take some ideas that we have on your idea, I think that's a great idea. My only caveat would be the doctors probably going to want you to err on the side of your child being hired. The first time you do this, as you mentioned, you did it after some trial and error, I'm not sure a new parent to diabetes should just, you know dial way up on their kids insulin because they're going to be in the car for nine hours, I think you should take it slowly and go a time or two or three and see what happens. And then make decisions like that after that. But for now talk to your team. They're they're going to say what I said, and they're going to support you and say, Don't worry about going out of range. You know how to do corrections, here's when and here's why to do a correction and then take it from there.   Stacey Simms  17:12 And like you said, some kids sit in the car and nothing happens. Right? They don't go super high. That's why can't do   Moira McCarthy  17:17 assumption, right. That's why you have to wait and see what happens. One quick   Stacey Simms  17:22 thing about the car that I learned the hard way you mentioned about you know, be prepared for traffic be prepared for you know, delays, if you have and we all do I think have a you know a diabetes kit. Make sure it's where you can reach it, especially if your child is very young, right? I mean, there's a lot of kids, they're older, they can have it the backseat with them. I'll never forget packing everything we needed and leaving it in the trunk or like the way back of the minivan. And then we were delayed. And I'm like I need a new inset like says it was leaking, or we'd like crawl through the car.   Moira McCarthy  17:54 That's a really good tip. So put it   Stacey Simms  17:57 up to the front seat with your pack, even if you just pack a couple of things. And we had so many car adventures. Okay, the next question, I loved this one, because this just I could picture this one I know you can do more. So Deborah said we are in the first year of diagnosis, I just realized I don't know what to do about our Christmas cookie tradition. We make a bunch and give them to relatives we usually eat as we go. Can we still do this with diabetes child is eight and is on multiple daily injections, so no insulin pump yet.   Moira McCarthy  18:26 So my answer is eat all the cookies, bake all the cookies, visit all the friends have all the fun, click your fingers if you want to. But then wash your hands, have all the fun and check in with your child's doctor. And what they're going to say is go do all that check at the end of all the fun. If you need a correction, here's what we'd like you to correct. And here's what we'd like you not to correct for they may not want you to correct because sometimes these things involve a little adrenaline high. And again, first times you have to see what's going on. But just have all the fun. Fix it later. If your child gets high during it, it's no big deal. If they get low, you've got cookies. There's an old saying it started with Kelly crewneck, who's a very well known person on the diabetes world on the internet. And she said people with diabetes can't have cookies, dot dot dot with poison in them. Right? The only cookies you can't have.   Stacey Simms  19:26 I think that's fantastic. And it took me back listening to that about we know we don't have a Christmas cookie tradition. But we certainly you know, I think most people with little kids love to bake. And it's just such a fun activity to do with them. And in the first couple of weeks with shots, it was so difficult. You know, Binney ran away from us. He didn't want anything to do with it. But after a little while, he didn't really care as long as we didn't make a big deal and make him stop what he was doing. So and we bought after, which I know is like bananas that people admit to bolusing after these days, but I think it's so much less   Moira McCarthy  20:00 Streisand gets really super smart, particularly with a small child.   Stacey Simms  20:04 And so for something like this, like we would bake, and then I would kind of try to estimate like, what did he licked the spoon? Did he eat the crumbs? You know, when you do a guess? And in my case, I would always get a little less because he was teeny tiny. And then we would eat the cookie, and a couple hours later, we would correct and move on. Now. I don't know, I feel like the fun as you said, the memories of that time, you know, outweighed the quote, unquote, out of range blood sugar, I'm sure his blood sugar went out of range. And he might have been low, because they sometimes they just get really excited. And you know, he might have been high, but he's, they're healthy.   Moira McCarthy  20:39 You know what, I think this, this mom, and anyone who's considering these kind of questions over the holidays should think about too, when I look back on Lauren's life, these 24 years with type one included, I don't remember that her blood sugar went higher low. I don't remember what her diabetes did one day, I remember that the cookie swap was fun. And so that's why I think it's important to focus on the fun, within reason with a kid with diabetes, you know,   Stacey Simms  21:12 oh, yeah, that's a great way to put it. And I'm realizing as he gets older, I have a lot of those same feelings. I'm so glad it didn't stop us. I'm sure at the time. My heart was pounding, right, especially at first, I'm sure I was worried. I'm sure I was thinking, Am I doing this the right way. But look, you know, you have those fabulous pictures and those great memories. So that's a great way to put it. Alright, so let's talk about well meaning relatives. More Hi, Moira. And Stacy. My aunt thinks she knows everything about diabetes. She has type two and is always lecturing me about not letting my second grader eat, quote, bad foods. Holidays are the worst. I'm sorry to laugh, because she wants us to have sugar free desserts. There's so much going on. In that question.   Moira McCarthy  21:59 Bless her heart, right. You know, I mean, what do you do? It would depend on what kind of person she is. And if they have, if they have a relationship that she could, I would call her ahead of time and say, Look, we're working on adjusting Stevie's life, whatever the child is, and, and there's a lot of things he's dealing with right now. So I'm just asking you, if you have anything you want to say about it? Could you say it to me now over the phone before we go, and let's just avoid talking about diabetes other than Hey, how you feeling? I'm really glad you're doing well at the holiday because I don't want him to feel sad when he has all this on his mind. That's a great way to put it. Who knows what she'll do. Right, right.   Stacey Simms  22:45 I mean, you have you have well meaning relatives who want to help you have nosy relatives who think they're helping, it all depends on my mother for the first year or two she wants to make she makes one of those sweet potato casseroles, not always with marshmallows, but it's got a ton of sugar in it. And so she made it sugar free. And I didn't really notice but it's not something Vinnie was going to eat much of anyway. Yeah, when he was he was three at his first Thanksgiving with diabetes. But she meant well, but what I found worked over the years, and I still use this, even though he's his own advocate. Now, I really found that saying, Our doctor says, which I made up, but our doctor says helped everything. So I would say to somebody like this. Oh, you know, thank you so much for thinking about my son. I really appreciate it. I gotta tell you things with diabetes have changed so much now. And our doctor says that he can eat these foods and as long as we can dose with insulin, you know, we know what we're doing. He's helping us or our doctor says that Thanksgiving should be a date, like every other day or whatever it is. But people would never listen to me. Listen to what my doctor   Moira McCarthy  23:46 says my my words for that was always her medical team. Yeah. sound very official, our medical team is me. But they don't need to know that. The one thing I'll say, though, is it's also okay, if it's not super aggressive, and really out of line. I think it's also okay to teach our children to show some people a little grace. And sometimes and all this even when people are wrong, maybe at the family thanksgiving, or Hanukkah, or whatever party isn't the time to say, Do you know what I mean? Great. And so if someone makes a sugar free thing, and your kid hates sugar free, you say to your kid, please just put a tiny slice of that on your plate and then push a couple pieces around under something. And it'll be fine. They met Well, yeah, you know, yeah, say and then afterwards, you can say hey, he really liked that. But FYI, next time, you don't even need to do that make the same delicious pie, but you don't need to make it sugar free. Right   Stacey Simms  24:41 on everything. And that's a good point. Because we're so in our society today, we're so ready to fight. We're so ready to be on the defensive. And so I think that that's a great point just to be able to say we really appreciate it. We know how you meant it, you know, just thanks and then have the discussion later on. Yeah,   Moira McCarthy  24:57 but if they're over the top aggressive about about telling your child what they do wrong with their diabetes, then you need to have a conversation ahead of time. That's right.   Stacey Simms  25:04 Or you know, even in the moment if this sometimes you see, you know, I made this for these kids who don't have diabetes and look at this wonderful vegetable plate I made for your child like they're having cupcakes, but you could have the carrot that it's okay.   Moira McCarthy  25:17 It just jello Jaguars. My daughter was locked up. I always have to bring a tray of jello jugglers This is before acting. And   Stacey Simms  25:25 that is so funny. I'm so sorry for sugary jello. jigglers Woohoo. Oh, my gosh. Okay, another question. How do I dose for all of the grazing that goes on during Thanksgiving and holiday gatherings? This is kind of similar to the Christmas cookies, or I would think our answer is going to be but in some homes, right? It's not just one set meal. It's we showed up and we're starting to eat and we don't stop for seven hours. Oh, yeah.   Moira McCarthy  25:51 My house isn't that yours?   Stacey Simms  25:53 Isn't? No, no, no.   Moira McCarthy  25:57 Not every house was like that on a holiday. Seriously, this is interesting. All right, well, I guess I'll answer this first, then talk to your medical team. Ask them about planning different times during the day for check ins. And then just let your child have what they're going to have. And at the check in times that you agree with your doctor, it may be every two hours, it may be every three hours, it may be twice I don't know. They'll they'll help you decide. You see where they're at. You look at what's going on what they're going to be doing next. And then you do a correction of corrections needed. That's it.   Stacey Simms  26:31 Go, I'm going to add a layer to that. Yes, please do. For those who are addicted. I don't know anyone like this. I certainly have never been like this anyone who's addicted to their Dexcom. So if you're listening to more thinking, how am I supposed to check every two hours when the Dexcom or wherever three hours, whatever the most no more thinking how am I gonna check at those intervals, when my Dexcom is blaring every five minutes, okay, stay with me, people consider turning your Dexcom high alarm off, and then look at your child's Dexcom High Alert off, and then only looking at it as recommended by your care team. It will take away an enormous amount of stress. Even if your child goes high. And you bolus it's not going to happen right away. You know this, it takes a long time for insulin to work, right. So you're not really doing yourself any favors by checking it every five minutes. I know it's hard. Ask your doctor. But that has helped me more than the years when I was glued to it listening for this a lot.   Moira McCarthy  27:34 And you know, I think that's really wonderful advice. Because there's nothing wrong with freeing up the family to enjoy a good time. If it's so important to you that you keep them in a certain range and you want to watch it all day, then go ahead. But I think what you suggested and what you just said you do is such a good model for your child, because as you care for your child, you're modeling how they should care for themselves later. And the reality is in this long, long, long, long, long lifetime marathon diabetes, you need to just chill a mile here and there. And by doing this and saying to your children, we're going to turn this off, this is okay. Don't worry about it, you're fine. You're modeling that for them. And you're giving them the confidence and the courage to know that they can be okay. If they're not doing, you know, 150%. So I love that answer. Stacy, you get a gold star. Yeah,   Stacey Simms  28:34 it's funny to think about, but that's actually how we use Dexcom. And how everyone use Dexcom intil. Gosh, I'll probably get the year wrong. But until, let's say 2015 Because Dexcom share did not exist, right? So at school, our child would like many others basically used his Dexcom receiver as a no finger stick monitor. Right. So at the time of day were Benny would normally have done a finger stick, he just looked at the receiver showed it to his teacher. And that was it. We started using it like that. So I think it makes it a little easier if you come home from the hospital, like a lot of families do attuned to every alarm. These things may seem like an astronomical ask, but you really can do it. And I would also add with the grazing, we you know, we were grazing experts, because I had a two year old with type one who was diagnosed. I mean, a few years after Lauren, so you know, was not on that very regimented timing. So Benny could pretty much eat all day, like a normal two year old. I mean, obviously not all day, but you know what I mean? Several times a day, and we just had to give them fast acting. So it makes it it does make it a little more difficult, right? It's not but it's not something you do every single day, either. So I think that you know, you've got to kind of let go a little bit, but it's not harmful and it can make these ladies have these wonderful memories. Alright, and finally, this question, I'm a little stymied by this one. What's the Christmas present for a child with die? beedis   Moira McCarthy  30:01 Okay, a good Christmas present for a child with diabetes is what they put on their Christmas list. If you want to give diabetes related gifts for Christmas, that's all good and fine. I knew someone who gave their child quote unquote, their insulin pump for Christmas and like, their heart was in the right place, and the child felt great, but it just made me a little sad. I guess if your child puts insulin pump on their Christmas list, though, that's different. But even then I think I'd say no, Santa doesn't need to bring you medical stuff, we can just get that went whenever you need it. There are toys and animals and things like that. If someone's interested in actually, diabetesMine is having me do a list of them that's going to run in late November, early December. We can link that on this after Oh, that would be great. Like   Stacey Simms  30:54 the American Girl doll stuff and road kid kits. Fabulous.   Moira McCarthy  30:59 And then I don't mean that there's anything wrong with that stuff. I just think that you should give your child gifts that they want as a child, not as a child with diabetes. Yeah,   Stacey Simms  31:09 I think a lot of that depends on how your family celebrates and what gifts you're giving. We are We joked in our family for Hanukkah, when I was growing up, you would get everything from the toy that you really, really wanted to the dictionary that you did not ask for to the socks that you need it right so if your gift giving is like that mixed up, and it's you know, if your family expectation is that kids will get super useful stuff in all the kids not just the kid with diabetes, then I guess I could see it. But I'm with you, I think unless it's something really fun like one of those add on what your list is going to be made up but like, what are those stuffed pancreas like? silly things like that. And yeah, accessories for dolls and fun stuff. It's just like a useful medical thing. I think you've got to be very careful and know, the child like especially a parent to a kid is one thing but if you're like the fun and or you're the family friend thinking this will be a big hit. I just be a little careful. One of the things I saw in another group was you know, there's a newly diagnosed child which they get the family and the most popular response was don't get them anything quote diabetes related, get them fuzzy slippers, and a gift certificate for babysitting or you know a trip to the movies and get them something fun and engaging.   Moira McCarthy  32:22 Get them something normal and and pushing back on what you said I still even if my family did that stuff, I still wouldn't give my child like a box of syringes. So core. I like if you're giving your kids toothpaste for Christmas, because that's what you do, then give your kid with diabetes toothpaste for Christmas treats the same way you treat your other kids when it comes to gifts.   Stacey Simms  32:42 That's a good point. I think if anybody ever gave Benny any diabetes related gifts, and no one would ever mind my family would have ever done that. But   Moira McCarthy  32:49 one time in our family Yankee swap, I used a syringe box, like for the gift and whoever opened it thought it was syringes and we're like, I don't get it. And I'm like, Oh, for goodness sake. It's just a box.   Stacey Simms  33:03 Open it up. Is a Yankee swap like a Secret Santa.   Moira McCarthy  33:07 Yeah, kind of but you you could take gifts away from like a one white elephant. I don't know. I'm sorry. That's a white Jewish lady. It's like we're from different worlds, Stacy.   Stacey Simms  33:21 Oh, you New Englanders.   Moira McCarthy  33:24 Bless my heart.   Stacey Simms  33:26 We do have one funny story. So on Christmas day in Gosh, I'm looking back already. This was this is eight years ago. So on Christmas Day, we started the Dexcom. The very first time we ever used the G four platinum. Vinnie was nine. Oh no, the g4 Platinum pediatric. So Vinnie was nine years old. And we were sitting around a Christmas day at my mom's house like you do. And we said, let's start the Dexcom. Why don't we will put it on we had been instructed on how to do it. Of course, again, I don't know if I can emphasize this enough. We do not celebrate Christmas. I don't think I would do this. Christmas. So but we put it on and I will never forget because that was you know, Christmas Day. Gosh, so yeah. Merry Christmas kid. That was the big horrible insert or two.   Moira McCarthy  34:14 But then it could have Chinese food before the movie, right?   Stacey Simms  34:18 Really my house.   Moira McCarthy  34:21 I know you.   Stacey Simms  34:23 That's great. So normally at the end here, we talk about where we're going in the diabetes community. Of course, you know, there's no diabetes events going on now. And I'm really, really hoping they come back next year. But I mean, I'm doing some virtual events. I'm reaching out, but I cannot wait to be in person again more.   Moira McCarthy  34:39 I feel you. I can't believe I was just thinking about this the other day because my Facebook memory was, I guess right before the pandemic I was in Buffalo, New York speaking at a big diabetes event at this time and they were all these pictures and people posting about interesting things they learned and how happy they were going to be and I was like, oh, I want to go back somewhere. I think we're We're gonna see things start bubbling up I do believe friends for life is going on this summer I'm hoping I'll be there I haven't heard yet but um I know that's probably happening and I think JDRF is going to start doing some smaller half day programs in the near future knock on wood so I hope we're in the same place to Stacey that's what I hope not only we get out and speak but you and I are in the same place.   Stacey Simms  35:22 Yeah. Oh my god,   Moira McCarthy  35:23 it's all about us.   Stacey Simms  35:26 Why not? I was kind of pausing because I don't remember when we saw each other live to look that up. At the end of the show.   Moira McCarthy  35:33 I think it's been at least two years Stacy that's really weird.   Stacey Simms  35:37 It has to be it has to ah, I miss you.   Moira McCarthy  35:40 Me too. We talk every day practically. I miss you as a as a human life form.   Stacey Simms  35:50 Well, the next time we get together we can we can do a Yankee swap.   Moira McCarthy  35:52 Yeah. And and a white elephant, white elephant.   Stacey Simms  35:57 Well, if I don't speak to you have a wonderful Thanksgiving, enjoy your family and your adorable grandchildren. And give Lauren my best and tell everybody we said hi. Same here   Moira McCarthy  36:07 and make sure those kids yours know that I still think they're awesome.   Announcer  36:16 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  36:21 I will link up some information, including to an episode we did with adults with type one and their take on Thanksgiving. I'll put that in the show notes along with the transcription for this episode, you can always go to diabetes connections.com. Every episode starting in January of 2020 has a transcription. And there's lots more information there. I got to tell you more. And I make it sound pretty easy now, right? But those first couple of years, it's so stressful because you're trying to have a nice holiday. You're trying to project confidence, you know, we're doing great. Diabetes won't stop us. And then you're freaking out, you know, what did you eat? Should we pre bolus what's gonna happen now? Am I gonna be up all night? You know, it's, well, you know, who's got the carb count? Is it accurate? Spoiler, the carb count is never accurate. It's never accurate. I hope you know that. We're estimating everything, even packaged foods. Even somebody who weighs in measures, everything is a total guess, on carbohydrates. So just do the best you can. And it's you got to get through that I think you've just got to get through that experience. There is no other teacher like experience and diabetes, you've got to make mistakes, you've got to kind of be upset, you gotta be worried you got to get through it. But if you let yourself I think as a parent, you really can get to a place where you're like sure marshmallows on sweet potatoes, we can figure that out and go from there. And if you hated my advice to turn the Dexcom off, let me know I would love to hear from you. You can yell at me all you want. Let me know if you try it though. And if it works for you, I don't want to cause more stress. I promise. Diabetes Connections is brought to you by Dexcom. And hey, listen, I'm all about using the technology in a way that helps you thrive with diabetes. So when I say turn it off, it's not a knock on Dexcom. It's sharing how we use it to help us make great choices. Live well and be happy. I stand by that you know we have been using the Dexcom system since he was nine years old. We started back in December of 2013. And the system just keeps getting better. The Dexcom G six is FDA permitted for no finger sticks for calibration and diabetes treatment decisions, you can share with up to 10 people from your smart device. The G six has 10 Day sensor where the applicator is so easy. I have not done one insertion since we got it but he does them all himself, which is a huge change from the previous iteration. He's a busy kid, knowing that he can just take a quick glance at his blood glucose to make better treatment decisions is reassuring. Of course we still love the alerts and alarms and that we can set them and turn them off how we want. If your glucose alerts and readings for the G six do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to diabetes connections.com and click on the Dexcom logo. A couple of quick housekeeping notes we will have a regular episode next week. Our regular episodes are on Tuesdays. So we will have one for you next week. We will not have an in the news edition of Diabetes Connections. Thanksgiving week though. I will not be doing that live on Wednesday and there will not be an episode Friday the 26th I will say if anything really big happens if we get an FDA approval, you know something like that. I'll probably pop on and give you an update. I you know, I know we're all waiting for something so I can't promise I won't do it. It's not it's like the news person in me I was in you know, I've been doing this since I was 19. So if something breaks, I'm gonna have to jump on. Even if Slade is like, you know, making turkey behind me. We'll figure it out. But right now again this week, the week of the 16th. We will have the regular in the news on Wednesday, which will become an audio only podcast on Friday. The following week. We will have a regular episode, but there will be no in the News episode Thanksgiving week. All right. With that thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening I'm Stacey Simms I will see you back here for in the news this week until then be kind to yourself Diabetes. Benny  40:10 Connections is a production of Stacey Simms media All rights reserved. All wrongs avenged

At this point in 2021, we thought there would be several new pieces of diabetes technology on the market. COVID delayed several FDA submissions and approvals so where do we stand? Stacey sits down with Kamil Armacki, AKA Nerdabetic, and Chris Wilson to talk tech. Both Kamil and Chris keep a close eye on everything from filings to clinical trials to investor calls and neither is affiliated with any diabetes company. There is also video of this if you prefer to watch over on the YouTube channel. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription below Click here for iPhone      Click here for Android Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, I wanted to try something a little different as we enter the end of 2021. And look ahead to next year, I thought it would be a good time to sort of take stock of diabetes Technology. Welcome to another week of Diabetes Connections. I'm your host, Stacey Simms. And we aim to educate and inspire about diabetes with a focus on people who use insulin. And while this community likes to say we are not waiting, frankly, there was a lot of stuff that we are waiting for right now, I asked a couple of friends who really have their finger on the pulse of this stuff to come on and share their thoughts. The only problem we really like to talk. So this is a longer episode than I expected. And frankly, it's not just that we'd like to talk there's just a lot of technology that we are waiting for. So to that end, I'm just going to jump right in, we'll do the quick add that we always do at the top and then we'll get to the panel. There is also video if you prefer to watch our conversation that's over on the YouTube channel. I'll link it up in the show notes but we are not showing any product. So it's really just about whether you prefer audio or video. Alright, Diabetes Connections is brought to you by Dario health. And the bottom line is you need a plan of action with diabetes. We've been lucky that Benny's endocrinologist has helped us with that and that he understands the plan has to change as Benny my son gets older, he wants that kind of support. So take your diabetes management to the next level with Dario health. Their published studies demonstrate high impact results for active users like improved in range percentage within three hypoglycemic events. Try Dario's diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections for more proven results and for information about the plan. And as always, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. All right, welcome. We're trying something new on Diabetes Connections. And that is the first of its kind kind of tech panel. And I am joined in this conversation by Chris Wilson and Kamil Armacki . And these are two guys that I'm gonna let them introduce themselves a little bit, but that I follow for technology news, as well as for some analysis. So thank you both for jumping on with me. You're not industry people. But let me ask you to kind of describe yourselves first, Chris, you are somebody that I always turn to for the insight and information about technology. But this is not what you do for a living?   Chris Wilson  3:00 No, not really. I sort of jumped into the online diabetes online community when I reached a point where I had access to insurance and could actually look at diabetes technology because it became affordable. And at that point sort of started jumping into a lot of the groups and online discussions tried to figure out what I was interested in for myself at the time. And then over time, I wound up being asked to join the admin team of a couple of the bigger Facebook groups getting involved on Twitter and other platforms. And so now i is part of that role. I sort of find and analyze listen to the investor calls that the companies do, you know, sort of keep an ear to the ground here what people's sales reps and endos are whispering about to to their patient populations and glean some information from that. I've also been a frequent participant in research, especially in clinical trials. I was in the clinical trial for the G6 that prove that acetaminophen didn't interfere with it. I was in the clinical trial for the Xeris Gvoke. I was in the clinical trial for the Ilet, which is still apparently ongoing. I've got a fair amount of experience for playing with stuff that isn't necessarily out yet. And sort of seeing things from a different perspective than just the end product that people see when they finally get a prescribe from their doctors.   Stacey Simms  4:23 That's great and comedic view or better known as Nerdabetic. On social media, many people probably recognize your Omnipod. Those are Omnipod pods lit up right behind you.   Kamil Armacki  4:34 That is absolutely right. That is 550 inch LED Omnipods. Most of them this is very DIY. Most of them actually placed with LED lights and painted and we saved them on a temporary wall kind of thing and we glued them off. So we had this is one of the proudest things I've ever done as Nerdabetic I also can't really take credit my dad that 95% I only paid a couple of walls, and I feel like I'm taking all the credit. So massive shout out to him.   Stacey Simms  5:07 I love it. I love it. And as Nerdabetic, you are known for interviewing CEOs getting all sorts of tech information out there. And we'll probably mentioned this at least once later on, you do a lot of both, you do some 3D printing, right to see what the items might look like. Yeah, so   Kamil Armacki 5:23 I've been running my YouTube channel for I think four years at this point, just when I started university, and I just graduated this summer. So it kind of it was over four years ago. So you just been trying out different things within within that channel. One of them was 3D printing. I'm absolutely fascinated by that technology. I don't own a 3D printer. But I think it is a very interesting way of giving an idea, a bit of a tangible feel to it. So for doing that, and all of those things they mentioned. And most recently, I had the honor of speaking to some pretty pretty important people in the industry to see what's been happening over there as well.   Stacey Simms  6:01 Cool. All right. And Kamil is in the UK, obviously, you sound like you're based in the UK, but you are there now, which means some of this discussion will include information from the US FDA, or at least we're gonna speculate about that same thing, European CE mark, but some differentiation of products there. But I just thought it'd be fun to talk to you guys. So all right, we've got it out there. And I'm a diabetes mom, I read stuff, I listen to stuff, I don't think quite as much as Chris, or Kamil, but that's my knowledge base. So just to be clear, nobody who works for the FDA, nobody who works for diabetes company, we are just observing and birth speculating, which I think would be some pretty fun and interesting conversation we'll see. So let's start by talking about what is in front of the FDA right now, because this year, and last year had seen some big delays due to COVID. So we're waiting. I mean, it's been a long time. Let's start with Omnipod 5. And that is, of course, still as we are speaking, I mean, who knows what will happen today or tomorrow, but it is still in front of the FDA. But what's interesting is when they submitted and Phil, I know you talked to their CEO recently I talked to her I believe right before they submitted, it was going to be very different from the other commercial hybrid close loops in that the range was going to be lower. In other words, your blood sugar range, initially, I believe, was supposed to be able to get below 100 As a set point, but now it's 110. And they do have all sorts of really interesting other features. What did Shacey Petrovic, the CEO of Omnipod share with you recently, when you talk to her anything changed, or anything that stood out to you?   Kamil Armacki 7:36 Yeah, so I've spoken to her a couple of weeks ago at this point. And the product that they've submitted to the FDA, for my understanding, has a target glucose, which goes as low as 110, and can be customized up to 150 milligrams per deciliter. In terms of the actual product, I think I'm very excited about Omnipod 5, because it will be the first product, the first pump, which actually talks directly to the Dexcom G6 continuous glucose monitor. So there'll be no need to carry a physical controller, which obviously, I think makes sense for a product like Omnipod because you know, you wear it on your body. And so it will connect directly in terms of actual updates to submission as of a couple of weeks ago, she said they still expect an A by the end of the year, with a limited release in the US. And during that interview, which was slightly kind of European focused. We talked about many things including Omnipod on the runway during Italy's Fashion Week in Milan. But she also mentioned that they are hoping to bring that technology to their to Europe to the UK, once they get their FDA approval.   Stacey Simms  8:48 When you said the first one or the only one do you mean in the UK? Because we've got Dexcom talking to Tandem, at least here in the States.   Kamil Armacki 8:55 First one where you don't need so where the pod talks wearable talks throughout behind okay. Yeah, I thought directly to the G 610.   Stacey Simms  9:05 Is control IQ approved in the   Kamil Armacki 9:06 UK stupid question. Yes, we have. So at the moment, we have control IQ and seven ATG which we will I'm sure mentioned Oh, yeah. Okay. I didn't come EPS actually. So we have three other countries across Europe. They have other systems like dialup as well, France, Germany, but we don't have that one here. Yeah. Hashtag Brexit.   Stacey Simms  9:28 I was gonna say show off, but then right. It's not in the UK. Lots of and there's other systems coming to that we may get to, Chris, anything that you have heard over the last year in terms of Omnipod? Five. I mean, I just feel like we're kind of waiting.   Chris Wilson  9:40 I mean, just from my view on the outside. I think that insolence estimates of hopefully getting it before the end of the year, probably right. I know that it did qualify as a breakthrough device. So it's supposed to have a faster review at the FDA, but we're still dealing with the COVID backlog with all kinds of stuff. For me, there's things that we probably expected six months ago, there's still pending. And I know there's always rumors circulating that this got approved, but it hasn't been released yet. And so half the time I'm going and checking the FDA database for what approvals were announced in the last week.   Kamil Armacki 10:16 Only Chris does this kind of stuff.   Stacey Simms  10:20 I did have an interesting question from a listener who was talking about Okay, so as we're taping, Dexcom g7 has not yet been submitted to the US FDA, it has been submitted in Europe. And her her thought was like, Oh, my gosh, if Omnipod has been sitting there all this time, and Dexcom hasn't even submitted, how much longer is it going to take? And my point to her was, it's not as though Omnipod and these other submissions are just sitting in a file cabinet. Right? I mean, they are actively being looked at. You're both nodding. Can you tell me a little bit about what we know I mean, these submissions again, they don't just land on a desk and then one day someone opens them and rubber stamps them. Back to our conversation in just a moment, but first Diabetes Connections is brought to you by Gvoke Hypopen and you know, low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out there are a lot of symptoms and they can be different for everyone. I am so glad we have a different option to treat very low blood sugar. Gvoke Hypopen is the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. And this made emergency situations even more challenging and stressful. This is so much better. And I'm grateful we have it on hand, find out more go to diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon.com/risk. Now back to Chris answering my question about FDA submissions.   Kamil Armacki 12:00 Yeah, so for the pandemic, the main reason as to as to why we have a backlog is that regulators that used to regulate that were in charge of regulating medical devices like continuous glucose monitors, hybrid closed loop systems. And this is across actually Europe and US it's very similar, simply because of the pandemic, they were actually responsible for overseeing all of the medical queries related to the pandemic from, you know, vaccines emergency authorizations. So that's what we call when a product is used in a slightly different way to kind of simplify it. And so using a CGM and hospital was a good example of that we seen an emergency authorization of that, so they've kind of, you know, dos thinks took priority. So too, you know, that's where we have a backlog, but now they from my understanding, kind of back on on track, and, you know, four hands on that backlog, working their way through it.   Chris Wilson  12:57 There's just only so many people to do the work. And I mean, even when stuffs in development, there's always a lot of back and forth between the company that's developing it and the FDA, what are you going to require us to do, and so then they alter the product design sometimes to make it fit what the FDA wants, and that can even go into is as deep as the training modules. And the other information that gets given to patients when the product is prescribed, they're looking at all of that they're looking at human factors testing are people you know, able to follow the directions and use it the way that it's intended to be used, are they going to do something stupid and mess it up? They're looking at all of that. And then they're going through all of that data on all the different aspects of the devices and needing to decide, okay, is this safe enough to actually be effective? And there are different standards in Europe versus in the US? The FDA has much higher safety thresholds, whereas the European standard is basically does it do what it says it's going to do?   Kamil Armacki 13:58 And just to close up Omnipod 5, I think FDA has added it Chrissie would agree this is just my personal opinion. I think FDA has been pretty scared of going to full control. And the biggest today there isn't an insulin pump, which offers, you know, remote bolus capabilities. And that's part of Omnipod 5, you know, that's what they've submitted to them. So, you know, my speculation would be that if actually they didn't submit full control within that first submission, maybe we already you know, maybe it would be here already. You know, it is an area that FDA has been very cautious about. So I guess that's a significant factor contributing to to the to the backlog as well to the delight.   Stacey Simms  14:40 Well, and that brings us to our next item that's in front of the FDA. Thank you for setting that up. So Tandem has also submitted in the last year and is waiting for bolus by phone. You know, that's not the official name of it. But I agree with you. I think the FDA is really taking a very, very careful look at that bit of technology. And Tandem, you know, I believe, to your point, Chris, there has been some back and forth. You know, they don't issue press releases. Every time they asked for that, but it is happening, I think, to me, you know, as a mom of a kid who takes his phone everywhere, you know, this is something that I cannot wait for. I mean, bullets by phone just seems like such a basic capability in 2021. But of course, it's a medical device, and it's your phone. Chris, are you hearing anything? Or do you have any opinion on that?   Chris Wilson  15:29 I mean, at least as far as Tandem goes, I think there's less of a risk because you still actually have the physical pump that can be used to do something if for some reason, there's a problem with the phone. If you're relying exclusively on the phone, you've got to worry about what happens if it gets lost. What happens if they're dead batteries? What happens if you unlock it and hand it to your kid to play a game and the kid goes into your bolus app and accidentally gives you 15 or 20 units of bolus while they're chatting around? I mean, all of those things need to need to be taken into consideration and mitigated as much as possible.   Stacey Simms  16:01 I wonder Kamil, it's interesting to think about Omnipod because they've when I've talked to them, I've always asked like, why can't you put some buttons on the pod. And their point was, and I think this leads to Chris's point from the phone, their point has always been well, it's for safety with the pediatric patients, they don't want the kids touching the pod pressing buttons, this makes perfect sense. I was a parent of two small children, they're gonna touch everything. But it's kind of the flip side now on the phone, right. So it's an interesting look to see what you trade off in a way.   Kamil Armacki 16:31 So actually, to that point, in the UK, we do have an insulin pump from rush called accucheck. Solo. And on the high level, it's kind of like a nominal pot, where the pot like device that you put on your body and actually has two buttons on it. So you can actually bolus from the patch itself. And the way they've actually engineered it is that you need to press both buttons at the same time, ensure that you don't kind of you know, lean on the you know, you could very easily lean on a button and just press it, you know, other companies have gone down that route as an Omnipod. To use that I do use a monopod. So I use Dexcom and Omnipod in a DIY setting. And yeah, I love the simplicity of it. So yeah, massive, massive fan.   Stacey Simms  17:14 I think it's just all trade offs. Right. I mean, there's no perfect system, I don't think but people want to perfect. Exactly. Right. Exactly. Chris, what do you use? If you don't mind me asking?   Chris Wilson  17:25 I am on a Tandem with control IQ, although I don't use it exactly as designed. I've been working with better bullet strategies and playing with the modes that have put that it gets put in be an exercise or sleep that change some of the the targets that it's trying to hit to get it to behave a little bit more like I think it should.   Stacey Simms  17:47 So you're using Ctrl Q and Kamil, you're using   Kamil Armacki 17:50 loop? Yeah, that's right. Yeah. on any iPhone. Yeah.   Stacey Simms  17:53 All right. I don't want to move on from Tandem quite yet. But I want to talk about loop in a moment. So we've got bolus by phone in front of the FDA, which we also think could come approval could come by the end of the year, but Tandem moved their submission for TSport. Right. They were going to submit that in 2021. Chris, they are moving that to 2022. Right.   Chris Wilson  18:12 That was the last that I heard. Yes. To me.   Stacey Simms  18:16 I see you nodding.   Kamil Armacki 18:17 Yeah, I agree that that's what my understanding of the T sport is, I think they had some communication with FDA with the phone control, which obviously plays into T sports as well. Like the point Chris was making, you know, there's no display I don't think on the although, you know, it's a patch, you know, it's kind of moving into that kind of tubeless to pipe bridge mode kind of pump. So yeah, I'm pretty sure they've decided it's pushed back further.   Stacey Simms  18:48 And I should have set that up better if you're not familiar with a tee sport is a very tiny version of the T slim it is been to me it looks kind of like a beefed up cartridge and it sticks somehow to your body. There is still a tube and there is still an inset, but it kind of I don't know if it dangles off, or it sticks some I don't know. So they haven't they haven't released that I've asked a bunch of people when Lily a while ago was coming up with its own pump and it was supposed to be inset and sticky. I'm still trying to figure out how it supposed to stick to your body with an inset and they haven't really explained that. So maybe at some point, but clearly you made a 3D version of this yourself right? Didn't you like mock up a Teesport at one point and freak everybody out? Because we thought you had one?   Kamil Armacki 19:27 I did. So just on that entire idea in general, there's actually a pump in it's been kind of out here in Europe and has been taken off the market and I think it's coming back at some point called collider which uses a similar idea of where three colors bright colors. Yeah, so So that's kind of it's an interesting concept because you have an infusion set and like a sticky dye upon your body. And I think it that's what Tandem has gone off as well. But yeah, I did. It's very interesting how people often will look at especially on YouTube because it's a very visual form, they will look at a picture without watching the video. And yeah, a lot of people thought I had some insider info on the T spot, which was a very interesting experiment and a lot of comments about that go like, where did you get this? And I'm like, I didn't Freeview print hello, it's 2020.   Kamil Armacki 20:19 Be careful, be careful, hey,   Chris Wilson  20:21 I need to take some of the blame, actually, I think for potential delays on the other Teesport, I was involved in some of the Human Factors testing. And based on some of the questions that I got asked afterwards, I think I may have done some things that they weren't expecting it some stupid things or something that was not dissipated. So that may actually be the source of some of the   Stacey Simms  20:45 Alright, well, if you can't answer I understand what the heck could you have done? What   Chris Wilson  20:52 I think it was, it was just in case of directions weren't necessarily clear. Or I was expecting, you know, think about this, rather than actually do it. I obviously can't go into specifics. But needless to say, I clearly wasn't doing everything that they expected as part of the tasks in the testing. So who knows that may be part of the the reason that things got delayed, but hey, if it prevents somebody else from doing the stupid things that I did, and having a problem later on, then that's actually a good thing. And actually,   Kamil Armacki 21:24 I'm so glad that you did, Chris, because so many companies have tried this idea of you know, having a patch and in a short tube. So novo, they went out of business Kaleido also really struggling, we don't really know if they're gonna come back. And Tandem is now trying, they're kind of stab at it. No one has really made this idea work. So   Stacey Simms  21:43 yeah, it's a good point. But one thing I do like, again, I don't have diabetes, I don't wear the devices. But the idea I like is that with an inset, you do have a choice of how it connects angled or what the cannula length is, or steel, you know, with Omnipod, or you don't have as many options in terms of how it connects. Now, many people will say to counter that, well, you have many more options of where you can put it, you know, so it really just depends on how you wear it where you're comfortable with. But I think that's why they keep trying cumulus because there's that different kind of inset that people can use. So who knows? But I think that's a really good point.   Chris Wilson  22:18 Well, it's a great example of how your diabetes may vary. Yeah, no one solution is going to work for everyone. So that's why it's important that we have these options.   Stacey Simms  22:27 Alright, so let's talk about loop. One of the other submissions. This is such a laundry list in front of the FDA is tide pool loop. And that was submitted earlier in 2021. It's been very quiet, but it is it's hanging out there. Anybody here anything? Anybody know anything? Any comments?   Chris Wilson  22:45 I really haven't heard anything. I mean, it's so pure speculation. Obviously, this coming from the open source community is going to be subject to a lot probably more scrutiny than if it's coming from an established player. And I was not entirely clear on exactly what the trials for approval looked like. It sounded like some of the DIY data from DIY loot may have actually been used as part of the submission. So I would imagine that that's probably at least one of the things that may be taking a little bit extra time because I'm feeling the FDA is probably going to look a little bit more closely at that than they would if it was coming directly from Insulet. Or someone else.   Stacey Simms  23:28 That's a good point and was used I believe, that's what they told me earlier this year was a lot of that open source a lot of that DIY community data was put in so you wonder what then the FDA came back and asked for no, no, what we really need is or no, that is enough. I mean, we'll find out later, but it's very interesting stuff.   Kamil Armacki 23:46 And in some ways, it is a perfect storm, because it is using, you know, using that DIY technology, which is just absolutely amazing. I mean, the whole title team has been so tremendous in this project. So it's you know, taking that DIY, but then also the phone control point that we mentioned earlier, where it's an Omnipod. So actually, you know if your battery dies, I'm sure everybody's asking those questions. You know, if your iPhone dies, how is the child going to bolus? I'm sure that those are the questions that you know regulated system has to they need to have that usually answers for that. So I'm sure they face in similar scrutiny on the phone point just like Omnipod 5 does with eventually   Stacey Simms  24:26 this just occurred to me and again, I don't use the system so that's probably way to think about it, but these DIY systems that already use the phone can you use your watch to control them to Kamil, I wonder if that's something that's done? Yes.   Kamil Armacki 24:39 It's it's just like with Dexcom you still need your phone. So phones like the the house the home of the of the whole system, you can remotely you know, bolus and enter carbohydrates and Al's meals etc. Using your Apple Watch. Bought a phone is still required to actually do all of the calculations the brain behind all of it on Omnipod, five doc, this all happened on the pod both title loop that's all happening on the phone just like with a DIY system. Oh, yeah, that's a really good point. So you really need that to to make this system work. And there are all of those you know, your phone die in, you know, someone's stealing your phone cases that you know, I'm sure FDA is wants answers for   Stacey Simms  25:22 it to be clear, because a lot a lot of information there. I think this is a good point Omnipod 5, as you said, controlled by the pod. So you lose your phone, it keeps on trucking, it's going to deliver basil, the loop will continue a tide pool loop and loop DIY, whatever it's called right now is all controlled by the phone. So if your phone dies, the system won't continue.   Kamil Armacki 25:40 Well, so by design, it will always deliver background insulin in the way that it's intended. I mean, my phone dies, sometimes you know, it's live, right? I'm a 23 year old. Me because it is difficult to keep it charged in the pub. So you know it does happen. So and those are kind of a real world cases that you know, I'm sure FDA is also asking about. So with the DIY system, and I would assume with Title loop as well. But that is just my speculation. When your phone dies with the DIY system, it automatically goes to the default background rates for you kind of bolus because you need your phone to do that. And I would assume it would be relatively similar of tide pool loop, because I don't think there would be making a separate backup device like Omnipod just doing with Omnipod 5. Okay,   Stacey Simms  26:31 thanks. Alright, last item that is in front of the FDA, I think is the Medtronic 780, which is already available in Europe.   Right back to our conversation, but first Diabetes Connections is brought to you by Dexcom. And if you're a veteran, the Dexcom G6 continuous glucose monitoring system is now available at Veterans Affairs pharmacies in the United States. qualified veterans with type one and type two diabetes may be covered and pick it up your Dexcom supplies at the VA pharmacy may save you a lot of time to connect with your doctor for more information. Dexcom even has a discussion guide you can bring with you I know it can be hard to know what questions to ask, get that guide, find out more about eligibility at dexcom.com/veterans. Now back to Kamil answering my question about whether the Medtronic 780 is available in Europe?   Kamil Armacki 27:34 That's right. Okay. So 780 G has been here for it's been approved last summer. So kind of just as COVID was kind of a couple of months in, and it's been rolled out across various countries in Europe. I think we got it in the UK earlier this year. Well, I think the 770 G's, the newest version that you guys have in the US. So the 700 pumps, they all have Bluetooth built in. So you can have your pump alarms, all of that on your phone, no control. But you can view everything by the 780s, kind of the newest pump in that line, which has a new brain new algorithm. In my view, it is completely different. Because actually, it's not really made by Medtronic. It's made by an Israeli company called Dream met.   Stacey Simms  28:23 So that's free. That's right. The algorithm is from Dream Med, I've interviewed them, I forgot to actually   Kamil Armacki 28:28 said that in one of my videos, and Medtronic wasn't really happy with me. So   Stacey Simms  28:32 I feel like we have it's ours. Now. It's been,   Kamil Armacki 28:35 they officially said something like it's built by a dream met with Medtronic engineers. So you know, it is a partnership. And that's apparently true. You know, I have no reason to deny that. So I'm sure they work together on it. But you know, the the foundation of seven ATG is actually completely different. It's not like they took 670 and added a couple of capabilities. You know, it's a great we design I mean, on the outside, it looks the same, but actually the the actual brain inside is completely different. And I guess one of the one of the key things that we mentioned is actually the ability to have your glucose set as low as 100. You know, people have diabetes across Europe, they've they've been really kind of enjoying that. And it has automatic corrections as well. So a lot of people listening to this might not be as techie as we are. So just in simple terms, it kind of matches control IQ, I would kind of say in terms of the feature set, maybe slightly better, because you can reduce your target to 100, which I know a lot of people have been asking about. I don't know if you agree, Chris, without saying it's kind of at the same level as control like you   Chris Wilson  29:37 from a tech perspective. Yeah, they both the the key difference or the key feature there is the automated correction boluses, which is what differentiates what they call an advanced hybrid closed loop from just a standard hybrid closed loop, which is what the 670 and 770 were, it's nice to see more high tech options coming to the market from more players. says it gives people more options.   Stacey Simms  30:01 That's interesting, though about any kind of criticism for mentioning dream, Ed, because I mean, control IQ was developed by type zero technology, right? Wasn't it like a University of Virginia thing that then Tandem bought? Yeah, well,   Chris Wilson  30:14 it got bought by Dexcom Dexcom, bought type zero and then license the tech to Tandem. So   Stacey Simms  30:22 interesting times. And we should also mention that all the Medtronic systems use their sensors. This is not yet a mix and match world, I believe the Medtronic sensors, and I keep hearing that they're much better, but still need to be calibrated. So even the latest version No, your shake your head, Kamil tell Oh, that's right. We're waiting for that approval in the US.   Kamil Armacki 30:42 Well, so. So guardian for has been approved in three guardians. And so that's the no calibration version. And it's I know, like one person who's using it. So it's not I think they slowly roll in and out. They haven't really started shipping it yet. But it's basically what we all know, as guardian free just with with no calibrations. As far as I'm understanding the accuracy is not improved. It's kind of the same, if not slightly worse, from a margin perspective with Guardian four, compared to Guardian three. And yeah, I think it's in the FDA backlog as well. I'm gonna go ahead and   Stacey Simms  31:21 just double check that on my end only because it'll be good to know the actual mark from their studies and things like that. So we'll pop that into the show notes. But I think you're exactly right, because I was just doing the time. It'll be interesting to see what the time shift is, in terms of episodes being released, because we were just doing our game show. Wait, wait, don't poke me for friends for life. And I actually I can't believe I forgot I asked this question about Guardian four. Because the codename for it or at least the in house name for it was Zeus. So we had been talking about Zeus for Medtronic for a long time, no calibrations I know this is the I get in the weeds of the trivia and then I forget what I know. So thanks for correcting me. Alright, and then Alright, let's talk about Dexcom. Because Dexcom g7, as we're taping g7 has not been submitted to the US FDA, but it has been submitted for European approval. Kamil, you had Dexcom CEO on your show, wearing and showing off the device. I was so jealous when I saw that I'm gonna yell at Kevin Sayer. Next time I talked to him. But yeah, tell us what that was like and what you thought of it when you saw it.   Kamil Armacki 32:27 You know, I've been the massive Dexcom advocate, I pay for my own decks because I'm not an ambassador, I just genuinely it's been a life changing product for me. And yeah, it's been it's been an honor speaking to him. So you've spoken to him a couple of weeks after they announced that they submitted for the for the European European approval. I mean, it looks tiny, as I'm sure you've seen, if you've seen the video, I'm incredibly excited to see kind of how that one develops, and from literally a couple of days. So they kind of in the investors call, like Chris was saying, I also sometimes tune into those, and they confirmed that the expecting to get that approved in Europe by the end of the year.   Stacey Simms  33:07 It's interesting. And Chris, maybe you could speak to this, for people who might not be that familiar, the Dexcom technology, while it is very different from the G6, the speed at which it might get approval, Europe is one thing, right us is another this is not like an insulin pump, we don't expect it at least to take quite as long as insulin pumps are different systems because it's not putting insulin into your body, right? It's just measuring,   Chris Wilson  33:28 but it is being used to calculate doses of a high risk medication, which is insulin, there's definitely still some concern as far as how accurate it is. And if it's off it, how off? Is it? Is it going to cause a problem? But I'm really excited with the clinical data that they presented. I think it was at EASD Earlier this year, showing that the g7 the marred the that measure of accuracy that they use is actually now under 8%. With the g7 which I mean we're getting into how much more accurate can we reasonably get just because there's so much variation in human body that I mean, you can take six fingerprints from six different fingers and get six different answers from his standard meter. The fact that we're really dialing in the accuracy is as tight as we can and actually ever since is almost in the same boat with their new Wow, what any product they had. I think two versions I recall, but that's coming as well. And the the 180 day version as long as we're talking CGM. Yeah, there is no absolute answer for anything. This is actually I was in a study last Thursday, where they were seeing how long I could go without insulin. But as part of it, they're they're monitoring it with a y si, which is this reference grade laboratory meter that they actually do a blood draw and they centrifuge it down. And then they measured the glucose level in the plasma without any of the blood cells in it. And that device in the lab was actually not putting out the correct numbers, there was some sort of hiccup, they had to restart it to get it to come up. But my Dexcom was matching, and then they compared it to multiple Ultra accurate fingerstick meters and set to figure out what was going on. But, you know, nothing's perfect. This was, you know, elaborate reference glucometer. That's the most accurate one that you can get. And they don't even make them anymore.   Stacey Simms  35:23 I will never forget, when Betty was little like poking the same finger, you said six different fingers, who put the same finger three times in a row because it was confusing or something. And it was always three different numbers. It's crazy.   Chris Wilson  35:33 I just think it's important that people keep in mind that you know, nothing is ever going to be perfect. whatever device you're wearing, however, you're measuring your stuff, there's always going to be variation, it's never going to be exactly the same number every time on every device   Stacey Simms  35:46 you mentioned ever since that's the CGM that goes under your skin. And then the transmitter goes on top. And Kamil, you are you've got a little bit are you using the libre as well like to test it out? Or did you? What did you show us earlier,   Kamil Armacki 36:00 I am trying the free celebrate free, which is like the newest version. It's not available in the UK, I should make it very clear. But someone bought it for me in Germany. And they imported it over to the UK is actually it's actually been a very interesting over here. Because obviously it's it's not available in the UK. So I had to enter freestyling briefly, there was no physical receipt, but you need to get an app. So only use your phone, you can only use your phone, there's no physical reader, there's no physical device, which I don't know how that's going to work with, you know, children going to school and you know, having to carry phones, but anyway, but it's not available in the British App Store. So I had to create a German Apple ID. And everything on my phone is German. So I gem Apple Music, German podcasts, everything is in German, it's still English. But other than that I have been enjoying my German lifestyle over the last I've had it for four days now. So it's been it's been fun.   Stacey Simms  37:03 What are the different features like what's I'm not as familiar with the Libre system. So what is new with the three,   Kamil Armacki 37:08 it's much smaller, it's much smaller compared to the first two. And on a high level, it works exactly like you would expect a CGM to work like Dexcom web, no scan and it just always shows the value and the glucose your trends alarms ever found on your phone. So they kind of made it work in exactly the same way as at the center of Dexcom. But most importantly for me, they keep them the same price. And I think that's very important for a lot of people have diabetes here in Europe because I mean, Libra has been a giant success in the UK for example, just because actually, because of its price point it is accessible to the National Health Service. So it is you know reimbursed to you know, vast majority pretty much every single person of type one who wants it to get can get it. And libre two is the same price point is libre one and now libre free. In Germany, when they did launch, it's also the same price. So they keeping it the same, which is which is very reassuring   Stacey Simms  38:08 process, we'll see what happens in the US. But that is very reassuring for our friends in Europe. I went device I meant to ask about and didn't but I don't think it's been submitted. And that is beta bionics and the iLet. And Chris, you kind of alluded to this much earlier in our talk, because you were I believe in one of those trials,   Chris Wilson  38:25 I was at least told that I was patient number one at the trial site that I was at.   Stacey Simms  38:33 But we don't think we don't know for sure they have not submitted down or have they?   Chris Wilson  38:38 Well, I keep hearing parents and other patients still people diabetes, still saying, you know, I just finished my time in the primary phase of the trial for the eyelids, or now my kid is going into the extension phase, things like that. So if the trial is ongoing, clearly, I don't think they've they've submitted yet. It's definitely more hands off. I won't lie my time and range did go down a little bit when I was on it.   Stacey Simms  39:03 But your your time and range we should specify is extremely high.   Chris Wilson  39:06 Right? My 90 day average right now is 94% a week going into the current trial, the arm of the trial that I just finished was actually 97.   Stacey Simms  39:20 So it's all relative, but otherwise. Yeah. But it's a good point in that, you know, the eyelid is much more hands off, as you mentioned,   Chris Wilson  39:32 right? It's you know, no correction boluses there's not even mechanism to do it. All you can really do is tell it when you're eating and give it a rough guesstimate as to the meal size. So I would imagine especially for people who want to be more hands off with their diabetes and have good control because of the control wasn't bad by any stretch of the imagination, that it'll be a very good option for a lot of people once it does get approved. And this is the Insulet only version. We've still got The version with insulin and glucagon having both a gas and a brake will definitely make it easier to drive the car going forward in the next version. So we're looking forward to, to them starting the trials on that as well.   Stacey Simms  40:13 Yeah, it is all relative. I mean, I just think about my son, you know, he misses a couple of meal boluses a week for sure. And I think he would happily trade off control, you know, to just have that kind of stuff be taken care of. It's so interesting to see how I mean, I'm, I'm, I know, we're gonna get somebody questions as Chris gets so much time and range, what is he doing with control IQ? So that'll be another episode tips and tricks from Chris to or maybe the maybe the tips and tricks, Kamil is just spent a lot of your time in diabetes trials? Yeah. I mean, I kidding. I know. That's not it. But   Kamil Armacki 40:48 well, you're my time and ranges, but it's knowing me about? Very, very happy with it. I like to say that my time and happiness, though is 98. If not 100%?   Kamil Armacki 41:00 Go? And that's what matters. Yeah, right.   Stacey Simms  41:04 Absolutely.   Chris Wilson  41:05 I mean, that we joke about doable, do a lot of trials. And it helps. But there is definitely some truth to that. I mean, I get to talk to and interact with some of the top endocrinologist in the world, right? Sometimes, you know, on a weekly basis. So I'm going into the clinic to have an injection of something that they're testing out or to check in and let them download the data from the device that I'm testing in half the time we're chatting while they're doing other stuff. And you know, discussing the theories that underlie a lot of this stuff. And it definitely deepens your understanding, if you want to really understand diabetes, more and more like an endocrinologist does that say, it's a great way to gain some experience?   Stacey Simms  41:49 Let's talk a little bit. We've talked about what's happening and what we're waiting for. So let's talk a little bit about what we're excited for. And not just the products that we mentioned. But if there's anything else that's on your mind, I'm curious what you guys who live with diabetes, you use these devices, you follow this tech? Chris, what are you looking forward to? And I mean, it could be something that we talked about, or something that's like maybe 10 years from now,   Chris Wilson  42:10 I think probably the thing that that's most interesting, I mean, to a certain extent, the tech we even if it's not there yet, we know where it's going. Yeah, where it's sort of the end point is the point is you were a sensor, you were a pump, and it does everything for you, and you don't need to worry about it. But beyond that, I think one of the things that I'm most excited about is seeing the medications that were originally designed for type twos being used in more type ones. Yeah, since most type ones do have some insulin resistance, it's actually you know, a known thing that happens, it's partly just due to the fact that normally, insulin gets made on in the middle and spreads out to the edges, and we're infusing it from the edges and having it go into the middle of the circulation. But things like I know, Stacy, you've mentioned in the past the SDLT, two drugs that help us her pee out the excess sugar from your blood, those have shown really great improvements in kidney health, cardiovascular outcomes, and making those safer for type ones, since it can cause an issue with going into DKA even though your blood sugar's stay relatively normal. That was actually the the test that I was last Thursday was checking a new drug that as an add on to help reduce the chance of that happening if you're a type one on one of these medications, but there's lots of different classes of medications that are coming out things that not only enhance the function of insulin, but potentially block some of the functions of glucagon to help improve things since they've documented that. A lot of type ones the the sort of regulation and counter regulation in insulin, the insulin glucagon axis, I guess, it does happen with a fair amount of frequency in people with type one. So that may be something moving forward. And actually, it's not even necessarily just diabetes. They're testing this medication that they were trying to lay on me as an enhancement for cancer immunotherapy. Wow. In North Carolina, I somebody was asking me about something. And so I went on the clinical trials website, it was digging into what said he's looking at this drug and found a study that they were looking at it to see if it'll enhance the ability of some immunotherapies for breast cancer. So I mean, a lot of this stuff may even have ripple effects outside of diabetes.   Stacey Simms  44:33 That's really amazing. All right. That's a great point. I love that. All right. You know, you don't have to go outside of technology. I mean, that is still technology gets medication, but can we what are you looking forward to? Are you looking at down the line? I'm   Kamil Armacki 44:46 going to keep this one very, very simple. I'm just looking forward to seeing more access to all of this. I feel like in terms of getting incredible technology. I feel like we could summarize all of this all of today's talking Massive tech, right? We have incredible continuous glucose monitors even better on the market. And even better versions of them are common over the next year or so with g7, libre free etc. Same with pumps, that technology so sadly, isn't really accessible to so many people. And this applies to so many regions, so many countries in the UK, we now have an a trial of 1000 people with diabetes trial in closed loop technology to hopefully have our national proof that it does work is self restraint and actually seeing all of this because, you know, it's like every single country wants their own proof even though you know, there are so many trials from all over the world proven that yes, actually, it does help people. But you know, it is a very bureaucratic process. So I'm just looking forward to actually see in 1000s, if not millions of people have access to CGM. And then if they choose to hypertrophic therapy.   Stacey Simms  45:55 That's wonderful. All right. Before I let you go, this last question, it's not really a great follow up to our discussion about access. But this is one that it just honestly, it drives me bananas, and I want to get your opinion on and that is this every other day, I feel like someone is asking me when the Apple Watch is going to monitor blood glucose with non invasively. Right, that I know, right? You're gonna get the watch, it's gonna read your blood glucose and then move on. And I get these questions all the time by people outside the diabetes community, frankly, who read about it or hear about it. What's your take? I mean, I know what's coming. I hope it's coming. I don't want to I feel like I'm the hope killer. I go on these threads. And I'm like, unless you see a clinical trial, right. It's not going to happen. But I feel like it is coming it will be useful to some people sometime, right?   Chris Wilson  46:44 I think, absolutely. I think there's a couple of companies that are pretty far along. In the process of actually doing non invasive glucose monitoring. I think you had an episode recently, where you mentioned one where they look at the eye, yeah, within the eye, which is cool. I've heard of a couple of different texts that are technologies that are being introduced, using either heat at low levels infrared, to potentially sense it, or radio signals, believe there's a company in Israel that's working on that as well. Yeah, they're probably not good enough to necessarily dose insulin from yet, but they're getting there and the tech keeps getting smaller and more portable and stuff, I think there's a company in Germany that's got the tabletop scale right now, where you can just basically put a finger into on the sensor and it will give you an estimate of your blood sugar in there hoping to scale that down to being a portable device that will be non invasive, and then eventually a wearable device that will be non invasive. So it's, it's definitely coming, but the stuff takes time, there's so figuring out serve a lot of the ways that the various sensing technologies interact with the body and figuring out exactly how best to estimate your blood sugar from the readings that they get back. So it's coming. I've seen presentations with actually impressive accuracy, especially considering that it's non invasive, but I don't see it any time at least probably not in the next couple of years, but especially integrated into a consumer device like an Apple Watch.   Kamil Armacki 48:13 I completely agree with Chris I think especially as someone living with diabetes we tend to look at this from a you know, kind of a medical point of view but if this ever were to happen, it's really a health companion and I think that entire trend have actually seen a lot of what I would consider mainstream technology companies you know, Apple Samsung, you know, those kinds of players becoming more involved in health is a good thing because I think you know, we've heard of so many stories of you know, people using you know, Apple watches and you know being alerted that actually your heart rate is too low or too high and actually you know, if you deploy that kind of capability on you know, a population scale you know, with with millions of people using Apple Watches, it really drives you know, big changes and cold drives colossal impact on you know, general population you know, how we live our lives for if ever does happen I mean, we hear about this all the time and literally this year I think it was six or seven days after Apple Watch Series seven came out there was already a rumor saying the Apple Watch Series eight Yes. Well habit and I saw on Twitter and I just went I just did this emoji six days, six days the longest amount of time we can have without any rumors about Apple Watch.   Stacey Simms  49:39 It just shows you how much money is in it   Kamil Armacki 49:43 It's click bait, interesting topic because you know it is the next frontier that you know everyone is trying to tackle. Yeah, so I understand the excitement bore and sometimes I'm probably causing it because I have talked about as well. In my in my printer diabetic days, I I was excited about it. I've been excited about as Nerdabetic, and we can't not be excited.   Stacey Simms  50:05 Well, even this episode, someone could clip out what Chris said it's coming.   Kamil Armacki 50:09 Yeah. But we do need to be realistic about it that even when it comes in, you know, 1015 years, it probably won't really have any tangible impact on any buyer lives.   Chris Wilson  50:21 Maintaining being realistic, that's a very good point. Because it reminds me of the vertex announcement a couple of weeks ago, with the the first patient of their trial, got infusion of stem cell derived Ilet cells, and is, you know, 90% reduction in insulin use. And everybody went nuts over that. And I wound up posting a big, long thread on Twitter explaining that really like this isn't the hard part yet. It's great that they're this far, it's awesome that people are pursuing different avenues, I hope they succeed. But this isn't going to be something that people are going to have in the next couple of years to just go in and get your eyelid infusion. And then you don't need to worry about measuring your blood glucose or worrying your pump or taking injections anymore.   Stacey Simms  51:10 I heard a great point on that, which was if they've sent a press release, it's quite different than if they've submitted a for publication in a clinical journal. It was a little bit, I'll say a little meaner than that. I think the quote was something like, you know, if it's a press release, they're looking for money, if it's a journal they're looking for, you know, approval. There's some truth to that, though. And I think that that's a good thing for us to keep in mind as we stay very hopeful is a very hopeful crowd. And as we stay realistic, as well, I think we've run the gamut. There's always so much more to talk about. So I hope you'll come back on when these things maybe we hear more, they start to get approved, or we just talk about different things. But this was great. Thank you both so much for jumping on.   Chris Wilson  51:50 It's always fun to talk to you, Stacey.   Stacey Simms  51:51 Oh, thank you, thank you. It's always great to get caught up on this stuff and kind of speculate and talk about it. So thanks so much. I appreciate you guys both being here. And we will put lots of links in the show notes and everywhere else we can find them so that people can find you on social and follow your musings and your thoughts, but I really appreciate it. We'll talk to you soon.   You're listening to Diabetes Connections with Stacey Simms. Lots of information there. I'm going to link up a couple of articles some things we referenced at diabetes connections.com. At the homepage for this episode, there is a transcription as well as always, what do you think? I mean, I know it was long, and there were a lot of things to get through. But I'd like to do that on a more regular basis, maybe with some different people in the community. Love to hear feedback from you what questions you have, what topics you'd like us to tackle. But man, those guys, really they know the ins and outs of all of this, they really keep their finger on the pulse. So we'll follow up. We'll do more on that. This was taped, as I said the very first week of November 2021. So in a couple of days between now and when the episode comes out, maybe something else was approved. If it happened, we will follow up on it here. All right, thank you, as always to my editor John Bukenas from audio editing solutions. We've got in the News Live every Wednesday now 4:30pm Eastern Time, on YouTube and on Facebook Live on both channels, and then we turn it around into an audio podcast episode that airs Fridays. So I hope to see you back here for that until then be kind to yourself. Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

With Dexcom announcing a big new agreement with Garmin this month, it seemed like a good time to check in on a few issues. Stacey talks with Dexcom's Chief Technology Officer Jake Leach about Garmin, the upcoming Dexcom G7 and Dexcom One. She asks your questions on everything from G7 features to watch compatibility to the future and possible non invasive monitoring. Just a reminder - the Dexcom G7 has not yet been submitted to the US FDA and is not available for use as of this episode's release. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Previous episodes with Jake Leach: https://diabetes-connections.com/?s=leach Previous episodes with CEO Kevin Sayer: https://diabetes-connections.com/?s=sayer Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode transcription below:   Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:20 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:26 This week Dexcom announced a big new agreement with Garmin this month seemed like a good time to check in on a few issues, including what happens to the watches and insulin pump systems that work with G6, when Dexcom G7 it's the market.   Jake Leach  0:41 We're already working with Tandem and Insulet. On integrating G7 with their products have already seen prototypes up and running, they're moving as quickly as possible.   Stacey Simms  0:49 That's Chief Technology Officer Jake leach who reminds us that the G7 has not yet been submitted to the US FDA. He answers lots of questions on everything from G7 features to watch compatibility to the future and possible non invasive monitoring. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show are we so glad to have you here I am the host Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. You know, my son Benny was diagnosed with type one right before he turned to my husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast. And when I saw the news about Garmin, and Dexcom. I knew you'd have some questions. And I thought this would be a good chance to talk about some of the more technical issues that we're all thinking about around Dexcom. These days. I should note that since I did this interview with CTO Jake Leach on October 19. And that's exactly one week before this episode is being released that Dexcom released some new features for its follow app. I did cover that in my in the news segment. That was this past week, you'd find the link in the show notes. And as I see it for that news that release in the update, the big news there is that now there is a widget or quick glance on the followers home screen, it depends on your device, you know, Apple or Android, there's no tech support, right from the follow up, and a way to check the status of the servers as well. And I think that last one should really be an opt in push notification. If the servers are down, you should tell me right, I shouldn't have to wonder are the servers down and then go look, but that is the update for now. And again that came out after this interview. So I will have to ask those questions next time. And the usual disclaimer Dexcom, as you've already heard, is a sponsor of the show, but they only pay for the commercial you will hear later on not for any of the content you hear outside of the ad. I love having them as a sponsor, because I love that Vinnie uses the product. I mean, we've used Dexcom since he was nine years old. But that doesn't mean I don't have questions for them. And I do give them credit for coming on and answering them. Not everybody does that. I should also add that this interview is a video interview, we recorded the zoom on screen stuff. You can see that at our YouTube channel. I'll link that up in the show notes if you would rather watch and there always will be a transcript these days in the show notes so lots of options for however it suits you best. I'm here to serve let me know if there's a better way for me to get this show to you. But right now we've got video audio and transcript. Alright Jake leach in just a moment. But first Diabetes Connections is brought to you by Dario health and you know one of the things that makes diabetes management difficult for us that really annoys me and Benny, it's not really the big picture stuff. It's all the little tasks that add up. Are you sick of running out of strips do you need some direction or encouragement going forward with your diabetes management? Would visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that in more you don't the wavelength the pharmacy you're not searching online for answers. You don't have to wonder about how you're doing with your blood sugar levels, find out more, go to my dario.com forward slash diabetes dash connections. Jake leach Chief Technology Officer for Dexcom thanks so much for joining me. How are you doing?   Jake Leach  4:22 I'm doing great, Stacey. It's a pleasure to be here.   Stacey Simms  4:24 We really appreciate it. And we are doing this on video as well as audio recording as well. So if we refer to seeing things, I don't think we're sharing screens or showing product. But of course we'll let everybody know if there's anything that you need to watch or share photos of. But let me just jump in and start with the latest news which was all about Garmin. Can you share a little bit about the partnership with Garmin? What this means what people can see what's different?   Jake Leach  4:49 Yeah, certainly so I'm really excited to launch the partnership with Garmin. So last week we released functionality on the Dexcom side and Garmin released their products, the ability to have real time CGM readings displayed on a whole multitude of Garmin devices by computers, and a whole host of their watches. So they've got a lot of different types of watches for, you know, athletics and different things. And so you can now get real time CGM displayed on that on that watch. So they're the first partner to take advantage of some new technology that we got FDA approved earlier in the year, which is our real time cloud API. So that's a a way for companies like Garmin to develop a product that can connect up to users data through the Dexcom, secure cloud and have real time data, we've had the capability to do that with retrospective data that three hour delayed, many partners are taking advantage of that. But we just got the real time system approved. And so Garmins, the first launch with it.   Stacey Simms  5:50 Let me back up for just a second for those who may use these devices, but aren't as technologically focused. What is an API? When you got approval for that earlier in the summer for real time API? What does that what does that mean? Yeah, so   Jake Leach  6:03 it's a API is an application programming interface. And so what it really means is, it's a way for software applications, like a mobile app on your phone, to connect via the Internet to our cloud with very secure authentication, and pull your CGM data in real time from from our cloud. And so it's basically a toolkit that we provide to developers of software to be able to link their application to the Dexcom application, and really on the user side, to take advantage of that feature, you basically enter in your Dexcom credentials, your Dexcom username and password. And that is how we securely authenticate. And that's how you're basically giving access to say, for example, Garmin, to pull the data and put it down onto your devices. What other   Stacey Simms  6:51 apps or companies are in the pipeline for this. Can you share in addition to Garmin? I think I had seen Livongo Are there others?   Jake Leach  6:58 Yeah, so Livongo so Tela doc would purchase the Lubanga technology, they've got a system. They're also in the pipeline for pulling in real time CGM data into their application. And so they're all about remote care. And so trying to connect people with physicians through, you know, technology, and so having real time CGM readings in that type of environment is a really nice use case for them. And so and for the for the customers. And so that's, that's where they're headed with it. And we've got kind of a bunch more partners that are in discussions in development that we haven't announced yet. But we're really see this, the cloud API's are interfaces as a way to expand the ecosystem around a Dexcom CGM. So we really like to provide our users with choice. So how do you want your data displayed? Where do you want it? And so if you want to right place, right time for myself, have a Garmin bike computer so I can see CGM readings right on my handlebars, I don't have to, you know, look down on a watch or even thought phones, it's really convenient. That's what we're about is providing an opportunity for others to amplify the value of CGM.   Stacey Simms  8:06 This was a question that I got from the listener. What happens to the data? Is that a decision up to a company like Garmin, or is that part of your agreement, you know, where everybody's always worried about data privacy? And with good reason?   Jake Leach  8:19 Yeah, data privacy is super important area when when you're handling customer information. And so the way that it works is, when you're using our applications at the beginning, when you sign up, there's some consents, you're basically saying this is what can be done with my data. And the way we design our systems is, for example, with the connection to the Garmin devices, the only way they can access your data is if you type in your credentials into there, it's like it's almost like typing your username and password into the web to be able to access your bank account. It's the same thing, you're granting access to your data. And each company has their own consents around data. And so we all are required by regulatory agencies to stay compliant with all the different rules to Dexcom. We take it very seriously, and are very transparent about what happens with the data that's in we keep it in all of our consent forms that you click into as you as you work through the app.   Stacey Simms  9:13 But to be clear to use the API or to get the Dexcom numbers on your garmin, you said earlier, you have to enter your credentials,   Jake Leach  9:19 you have to you have to enter your Dexcom username and password. And that's how we know that it's okay for us to share that information with Garmins system because you are the one who authorized it.   Stacey Simms  9:30 Right. But that's also how you were going to use it. You just said you have to enter your name and password for them to use the information. So they just have to read individually like okay, Garmin or Livongo or whomever. Yes. Your individual terms of services.   Jake Leach  9:42 Yeah, for each each application that that you want to use you it's important to read the what they do with the data and how to use it.   Stacey Simms  9:49 That's really interesting. And Has anything changed with Dexcom? It's been a long time since we've talked about how you all use the data. My understanding is that it was blinded, you know, you're not turning around over to health insurers and saying yeah, done on this day this or are you?   Jake Leach  10:03 No, no, not at all, we basically use the information to track our product performance. So we look at products there. So it's de identified, we don't know whose product it was, we just can tell how products are performing in the field. That's a really important aspect. But we also use it to improve our products. So we when we see the issues that are occurring with the use of the product, we use it to improve it. So that's, that's our main focus. And the most important thing we do with it is provided to users where, where and when they need it. So you know, follow remote monitoring that the reason we built our data infrastructure was to provide users with features like follow and the clarity app and so forth.   Stacey Simms  10:36 Do those features work on other systems? Can I use Garmin to share or follow?   Jake Leach  10:41 Not today? So right now, it's, it's basically intended for the the person who's wearing the CGM. It's your personal CGM credentials that you type in to link the Carmen account. And so for today, it's specific around the user.   Stacey Simms  10:57 I assume that means you're working on for tomorrow.   Jake Leach  10:59 There's lots of Yeah, lots.   Stacey Simms  11:02 Which leads us of course to Well, I don't have to worry about that right now. Because you can't use any of this without the phone and the Phone is how we could share it follow. So it's not really an issue yet. Jake, talk to me about direct to watch to any of these watches. Yeah, where do we stand? I know G6. It's not going to happen. Where are we with G7? Right back to Jake answering my question, you knew I was gonna bring that up. But first Diabetes Connections is brought to you by Gvoke Hypopen. And when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar, why we carry emergency glucagon, there's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle. In usability studies. 99% of people were able to give Gvoke correctly find out more go to diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon.com/risk now back to Dexcom's jake leach answering my question about direct to watch   Jake Leach  12:19 That's a great question and a really exciting technology. So direct to watch is where through Bluetooth, the CGM wearable communicates directly to a display device like a watch. So today, G6 communicates to the phone and to insulin pumps in our receiver are the displays. With G7, what we've done is we've re architected the Bluetooth interface to be able to also in addition to communicating with an insulin pump or a receiver and your mobile phone, it can also communicate with a wearable device like a Apple Watch, in particular, but other watches have those capabilities, with G7, reducing the capability within the hardware to have the direct communication director watch. And then in a subsequent release, soon after the launch to commercial launches of G7, we'll have a release where we bring the director watch functionality to the customers, there's the Bluetooth aspect, which is really important, you got to make sure it doesn't impact battery life and other things. But there's also the aspect of when it is direct to watch, it becomes your primary display. And so being able to reliably receive alerts on the watch was something that initially in the architecture wasn't possible. But as Apple's come out with multiple versions of the OS for the watch, they've introduced capability for us, so that we can ensure you get your alerts when you're wearing the watch. And so that was a really important aspect for us. And it's also for the FDA to ensure that if that's your main display, you've walked away from your phone, you have no other device to alert you that it's going to be reliable. And so that's exciting progress of last couple years with Apple making sure that can happen. You know,   Stacey Simms  13:56 we're all excited for Direct to watch. Obviously, it's a feature that many people are really clamoring for. But you guys promised it first with the G five in 2017. Do you all kind of regret putting the cart before the horse that way? Because my next follow up question is why should we believe you now?   Jake Leach  14:15 Yeah, you know, it Stacy's a good question. So we are hand was kind of forced because Apple actually announced it before we did. So they basically said we're opening up this capability on the watch to have the direct Bluetooth connectivity. And of course, we were excited to have someone like Apple talking about CGM on that kind of a stage. But then as we got into the details of actually making it work, we, you know, continually ran into another technical challenge after another technical challenge, and I totally agree. I wish it would have been two years later that they talked about at the keynote, but I'm comfortable that we've gotten past those types of issues. And so and it is built into G7. So we've got working systems and so it will introduce it rather quickly with G7   Stacey Simms  14:56 and to confirm G7 has been submitted for the CE mark Because the approval in Europe, but has not yet, as you and I are speaking today has not yet been submitted for FDA approval in the US.   Jake Leach  15:06 Yeah, we're just we're just finishing up our submission, we get some validations that we're running on some of the new manufacturing lines to make sure we can build enough of these for all the customers, we want to focus to move over to G7 as quick as possible. And so we'll we'll submit you seven to the FDA before the end of this year,   Stacey Simms  15:22 just kind of building off what you mentioned about Apple and making these announcements or, you know, sometimes Apple lets news get out there. Because they I don't know if they seem to enjoy it. I'm speculating. I don't have any insight track at Apple. But I wanted to ask you, I don't know if you can say anything about this. For the last year, every time I talk to somebody who's not getting the diabetes community, but they're on a technology podcast, or they're, they're hearing things about non invasive blood glucose monitoring, right, the Apple, Apple series seven or some watch this year, we're supposed to have this incredible, non invasive glucose monitoring was gonna put Dexcom and libre out of business, it was gonna be amazing. Of course, it didn't happen. But a bunch of companies are working on this. And Apple seems to be really happy to say maybe, or we're working on it, too, is Dexcom listening to these things. I mean, obviously, they're not here yet. They they are going to come. I'm curious if this is all you kind of happy to let that lay out their speculation. Or if you guys are thinking about anything like this in the future,   Jake Leach  16:17 we pay a lot of attention to non invasive technologies. We have a an investment component of our company that looks at you know, early stage startups. We also have many partnership discussions around CGM technologies. And so when it comes to non invasive, I think we'd all love to have non invasive sensors that are accurate and reliable. You know, for many, many years since I've been working on CGM, and many years before that, there has been attempts to make a non invasive technologies work. The challenge, though, is it's just sensing glucose in the human body with a non invasive technology is not been proven feasible. It's just there's a lot of different attempts and technologies have tried, and we pay close attention. Because if if something started to show promise, we become very interested in it. And basically making a Dexcom product that uses it, we just haven't seen anything that is accurate and reliable enough for what our customers need. That's to say, there could be a use case where a non invasive sensor doesn't have to be as accurate and reliable as what what Dexcom does. And so maybe there's a product there. But we're very focused on ensuring that the accurate, the numbers that we show, the glucose readings that we present to users are highly accurate, highly reliable, that you can trust them. And so when it comes to non invasive, we just haven't seen a technology that can do that. But I know that there's lots of folks out there working on it. And we're, we stay very close to the community.   Stacey Simms  17:40 Yeah, one of the examples I gave a guy who doesn't he does an Apple technology podcast, and he was like, you know, what, what do you think? And I said, Well, here's an example. He would a scale, and you have no idea if it's accurate. But you know, that once you step on it that that number probably is is stable, then you know, okay, I gained 10 pounds, I lost 10 pounds. But I have no idea if that beginning number makes any sense at all, you might be able to use that if you are a pre diabetic, or if you're worried about blood glucose, but you could never dose insulin using it because you have no idea where you're starting. So I think that's I mean, my lay person speculation. I think that's where that technology is now and to that point, but other people outside the diabetes community are looking to one of the more interesting stories, I think, in the last year or two has been use of CGM and flash glucose monitoring for people without diabetes at all, for athletes, for people who are super excited and interested in seeing what their body's doing. So we have companies like levels and super sapient. And you know, that kind of thing using the Liebreich. I'm curious of a couple of parts of this question. If you think you want to answer it is Dexcom. Considering any of those partnerships with the G7, which is much more simple, right? fewer parts and that kind of thing.   Jake Leach  18:46 Yeah, that's a great point, Stacey. So yes, G7 is a lot simpler. It was designed to be to take the CGM experience to the next level. And part of that is just the ease of use the product deployment the simplicity, someone who's never seen a CGM before, we want to be able to walk up approach G7 And just use it. There's a lot of opportunity we feel for glucose sensing outside of diabetes. Today CGM are indicated for use in diabetes, but in the future, with 30% of the adult population in the US having pre diabetes, meaning the glucose levels are elevated, but not to the point where they've been diagnosed with diabetes. There's just so much opportunity to help people understand their blood sugar and how it impacts lifestyle choices impact their blood sugar. In the immediate feedback you get from a CGM is just a there's nothing else like it. And so I think, you know, pre diabetes and even as you mentioned, kind of in athletics. There's a lot of research going on right now in endurance athletes, and in weight loss around using CGM readings for those different aspects. So I think there's a lot opportunity we're today we're focused on diabetes, both type one and type two and really getting technology to people around the globe. That can benefit from it. That's where our focus is. But we very much have programs where we look at, okay, where else could we use CGM? It's such a powerful tool, you could think in the hospital, there's so much opportunity around around glucose. Alright, so I'm   Stacey Simms  20:13 gonna give you my idea that I've given to the levels people, and they liked it, but then they dropped off the face of the earth. So I'll be contacting them again. Here's my idea. If somebody wants to pay for a CGM, and they don't have diabetes, but they're like paying out of pocket because they like their sleep tracker, and they like this and they like that, or some big companies gonna buy it and give it away for weight loss or whatever. You know, the the shoe company toms, where you buy a pair of shoes and they give one away. People are in the diabetes community are scrimping and saving and doing everything they can to get a CGM. Maybe we could do a program like that. Where if you don't quote unquote medically need a CGM. Your purchase could also help purchase one for an underserved clinic that serves people with diabetes.   Jake Leach  20:54 Getting CGM to those folks that didn't need them, particularly underserved areas, clinics. It's so important. I like the idea. It's a that's if there was a cache component that then provided the CGM to those that are less fortunate. I think that's, I like the idea. Next month is National Diabetes Awareness Month. And one of the things we're focused on for the month of November is how can we bring broader access to CGM? It's something we've been working on, you know, since we had our first commercial product, and there's still, you know, many people in the United States benefit, you know, 99% of in private insurance covers the product. You know, a lot of our customers don't pay anything, they have no copay. But you know, that's not the case for everybody. And so there's, there's definitely areas that we need to we are focusing on some of our non profit partners on bringing that type of greater access to CGM, because it's such a powerful tool and helping you live a more normal life.   Stacey Simms  21:50 In the couple of minutes that we have left. I had a couple more questions, mostly about G7. But you mentioned your hospital use. And last year, I remember talking to CEO Kevin Sayer about Dex comes new hospital program, which I believe launched during COVID. Do you have any kind of update on that or how it's been going?   Jake Leach  22:06 Yeah, so it was a authorization that we got from the FDA to raise special case during COVID, to be able to use G6 in the hospital. And so we had quite a few hospitals contact us early on in COVID, saying, Hey, we've got these patients, many of them have diabetes, they're on steroids. They're in the hospital, and we're trying to manage their glucose. And we're having a hard time because their standard of care in hospitals is either labs or finger sticks. And so we got this authorization with the FDA, we ship the product, many hospitals acquired it, and they were using it pretty successfully. What we'd say about G6 is really designed for personal use your mobile phone or a little receiver device, designed integrated with a hospital patient monitoring system or anything like that. You could imagine in the future that that could be a real strong benefit for CGM, the hospital, you can imagine you put it on, you know, anybody who has glucose control issues comes in the door. And then you basically can help ensure where resources need to be directed based on you know, glucose risk. I've always been passionate about CGM at a hospital. It's one of the early projects I worked on here. Dexcom. And I think it there's a lot of promise, particularly as we've improved the technology. So there's still hospitals today using G 600 of the authorization. And we're interested in designing a product for that market specifically, instead of right now. It's kind of under emergency years. But we think there's there's a great need there. That CGM could could help in basically glucose control in the hospital.   Stacey Simms  23:28 That's interesting, too. Of course, my mind being a mom went to camp as well. Right? If you could have a bunch of people I envision like a screen or you know, hospital monitoring that kind of thing. You wonder if you could do something at camp where there's 100 kids, you know, instead of having their individual phones or receivers at camp, it would be somewhere Central?   Jake Leach  23:46 Well, you know, what, between with the with the real time API, there are folks that are thinking about a camp monitoring system that can basically be deployed on campuses right now with follow. It's great for a family, but it's not really designed to, to follow a whole camp full of campers. But with the real time API, there's opportunities for others to develop an application that could be used like that. So yeah, there you go.   Stacey Simms  24:08 All right, a couple of G7 questions. The one I got mostly from listeners was how soon and I know, timelines can be tricky. But how soon will devices that use the G6? Will they be able to integrate the G7 Insulin pumps, that sort of thing? Sure. It's only Tandem right now. But you know, Omnipod, soon that that kind of thing?   Jake Leach  24:26 Yeah, I mean, that's coming. So I'll start with the digital partners like Garmin and others, that is going to be seamless, because the infrastructure that G6 utilizes to move data to through the API's is the same with G7. So that'll be seamless. When you talk about insulin pumps, so those are the ones that are directly connected to our transmitters that are taking the glucose readings for automated insulin delivery. So those systems were already working with Tandem and Insulet. On integrating G7 with their products have already seen prototypes up and running so they're moving as quickly as possible. So once We have G7 approved, then they can go in and go through their regulatory cycle to get G7 approved for us with their AI D algorithms. Really the timing is dictated mainly by those partners and the FDA, but we're doing everything we can to support them to ensure this as quick as possible.   Stacey Simms  25:17 Take I should have asked at the beginning, I'm so sorry, do you live with type one I've completely forgotten.   Jake Leach  25:21 I don't I made a reference to where I wear them all the time. Because, as you know, kind of leading the r&d team here, I love to experience the products and understand what our users what their experience is. And I just love learning about my glucose readings in the different activities I do. So I don't have type one. But I just I use the products all the time.   Stacey Simms  25:42 So to that end, have you worn the G7? And I guess I'd love to know a little bit more about ease of use. It looks like it's, it just looks like it's so simple.   Jake Leach  25:51 It is. Yeah. So I've participated in a couple of clinical trials where we use G7, it is really simple. One of the most exciting things though, I have to say is that when you put it on, it has this 30 minute warmup. So the two hours that we've all been used to for so many years, by the time you put the device on and you have it paired your phone, it's there's like 24 minutes left before you're getting CGM. So it's like it's it. That part is just one of the things that you it sounds awesome. But then when you actually experience it, it's pretty amazing. But yeah, the ease of use is great, because it's the applicator is simple. It's a push button like G sex where you just press the button and it deploys. But there's other steps where you're not having to remove adhesive liners, the packaging is very, very small. So we really focused on low environmental footprint. And so it's really straightforward. But probably the most the really significant simplification the application process is because the transmitter and the sensor all one component and sterilized and saying altogether, there's no pieces, there's no assembly required, you basically take the device and apply it and then it's up and running. There's no transmitted a snap in or two pieces to assemble before you you do the insertion.   Stacey Simms  26:59 I think I know the answer to this. But I wanted to ask anyway, was it when you applied for the CE mark? And I assume this would be the same for the FDA? Are there alternate locations? In other words, can we use it on our arms?   Jake Leach  27:11 And yeah, that is that is a great question. Yeah, our focus with one of our phones with G7 and the revised form factor, the new new smaller form factor and sensor probe was arm were so yeah, arm wears is really important part of the G7 product.   Stacey Simms  27:26 I got a question about Dexcom. One, which seems to be a less expensive product with fewer features that's available in Europe. Is that what Dexcom? One is?   Jake Leach  27:34 Yeah, so there's a product that we recently launched in Europe in European countries. That is it's called Dexcom. One. And what it is, is it's it's a product that's designed for a broad segment of diabetes, type one, type two, it's a lower price point. It has a reduced feature set from G6. But what it's really about is simplicity. And so in you know it's a available through E commerce solutions. So it's really easy to acquire the product and start using it. It's really to get into certain markets where we either weren't didn't have access to certain customers. And so it's really designed for get generating access for large groups of people that didn't have access to CGM before.   Stacey Simms  28:20 What does e commerce solution mean? No doctor   Jake Leach  28:23 there. So outside the United States CGM isn't no prescription required for many, many countries. So the US is one of the countries that does require prescriptions, other some other countries do too. But there's a large group outside the US that don't, but it's really around, you can basically go to the website, and you can purchase it over a website. So really kind of nice solution around think Amazon, right. You're going you're clicking on add the sensors and you're purchasing it. It's a exciting new product for us that we are happy to continue developing.   Stacey Simms  28:53 I think it might come to the US don't know. Yeah, that's   Jake Leach  28:56 good. Good question. Don't don't know. I mean, I think right now we see CGM coverage is so great access is great for CGM in the US it can always be better and extend your focus on that. But it's really for countries where there wasn't access,   Stacey Simms  29:08 I would think tough to since we do need a prescription differently. Yeah, Jake, you have been with Dexcom, almost 20 years, 18 years now. And a lot has changed. When you're looking back. And looking forward here at Dexcom. I don't really expect you to come up with some words of wisdom off the top of your head. But it's got to be pretty interesting to see the changes that the technology has brought to the diabetes community and how I don't know it just seems from where I sit and you're probably a couple of years ahead. It seems that the last five years have just been lightspeed. It has   Jake Leach  29:39 been things are speeding up in terms of our ability to bring products to market and there's a lot of things one is the development of technology. The other component is working with your groups like the FDA on you know, how do we get products to the customers as fast as possible and that that's been a big part of it right moving cheese six to class to becoming an IC GM that That was a huge part of our ability to get the technology out quickly and also scale it. I think there's a lot of aspects that has been faster. And you know, when I started Dexcom, we had this goal of designing a CGM that was reliable didn't require finger sticks that could make treatment decisions. All that and we were 100% focused on that. And as we got closer and closer, and now we have that which you six and also what you seven, then the opportunity that that product can provide, you start to really understand how impactful CGM can be around the world. And that's what I'm excited about now is I'm still excited about the technology always will be and we still have lots to do on making it better, more reliable and more integrated. But just how much CGM can do around around the globe. There's just so many things. It's beyond diabetes to so very excited about the future.   Stacey Simms  30:47 Many thanks, as always, and we'll talk soon, I am sure but I mean, I could never get to say it enough. I can't imagine doing the teenage years with my son without Dexcom. You guys, I know you did it just for me. You did it just in time. Appreciate it very much. He is doing amazing. And I can't he would not be sticking his fingers 10 times a day. So thank you.   Jake Leach  31:05 That's great to hear. Thanks, Stacy.   Announcer  31:12 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  31:18 As always more information at diabetes connections.com. And yeah, but that last bit there, I can say nice things. I mean, I really do feel that way. And I can still ask not so nice questions. Like if you're new, quite often, I will open up a thread in our Facebook group. It's Diabetes Connections of the group to gather questions for our guests. And I did that here with Dexcom, there's usually quite a lot of questions, I do have to apologize, I missed a big one. Because of the timing of the interview, I promise I will circle back around next time I talk to Dexcom. And that is all about the updates for iOS and for new phones, and how you know, sometimes Dexcom is behind the updates. What I mean by that is that they lag behind the updates. So you can go to the Dexcom website, I'll put a link up for this for Dexcom products that are compatible in terms of which iOS and that kind of thing. And they are behind. And Dexcom will always say they've said very publicly that they are working hard to catch up. But I guess the question that a few people really wanted to know was why, you know, why do they lag behind? What can be done about that? So they know, but I think it would be a good question to ask. So Sarah and others. I appreciate you sending that question. And I apologize that I didn't get to it this time around. And I'll tell you, you know, it's not something we've experienced, but I think it has to do and I'm speculating here more with the phone with the the newness and the the model of the phone sometimes then for the updates, especially if you don't have your updates on automatic. So I guess I'm kind of saying the same thing. But what I mean by that is Vinny, and I have very old phones. I have an eight. I'm not even sure he has the eight. We are terrible parents and I don't care about my phone, I would still have a Blackberry if that were possible. So I can't commiserate. I'm so embarrassed to even tell you that I can commiserate with the updates, because it's just not something that we have done. Benny, definitely if he were here, trust me. It's like his number. I would say it's his number one complaint that it's really high up on the list of complaints to the parenting department in our house. And yes, Hanukkah is coming. His birthday is coming. There will be some new phones around here. I'm doing an upgrade. I'm sure both of us have cracked phones. Were the worst. Oh, my goodness. All right. Well, more to come in just a moment. But first Diabetes Connections is brought to you by Dexcom. And this is the ad I was talking about earlier in the interest of full disclosure. But you know, one of the most common questions I get is about helping kids become more independent. I get asked this all the time at conferences for virtual chats in my local group. These transitional times are tricky. And we've gone through this preschool to elementary elementary to middle middle to high school. I can't speak high school to college yet, but you using the Dexcom really makes a big difference. For us. It's not all about sharing follow, although that's very, very helpful. Just think about how much easier it is for a middle schooler to look at their Dexcom rather than do four to five finger sticks at school, or for a second grader to just show their care teams a number. Here's where I am right before Jim. At one point, Ben, he was up to 10 finger sticks a day, he didn't have Dexcom until the end of fourth grade not having to do that made his management a lot easier for him. It's also a lot easier to spot the trends and use the technology to give your kids more independence. Find out more at diabetes connections.com and click on the Dexcom logo. I don't know about you, but I am getting a ton of email already about Diabetes Awareness Month and that is November this time of year I usually get I'd say 120 emails that are not snake oil, right one in 20 emails that maybe make sense for something we want to talk about on the show here that I would share on social media and I'm just inundated with nonsense. So I hope you are not as well. But I gotta say Diabetes Awareness Month this year. I've been pulling in My local group and talking about what to do because usually I highlight a lot of people and stories and I'll I'll still do that, I think, but I got to tell you people are, um, you know, this, we're all stressed out. And while it's a wonderful thing to educate, I always think Diabetes Awareness Month is not for the diabetes community, right? We are plenty aware of diabetes, this is a chance to educate other people. And that's why I like sharing those pictures and stories on my page, because the families then can share that with their people. And it's about educating people who don't have diabetes. But gosh, I don't know this year, I'm going to be just concentrating on putting out the best shows that I can I do you have a new project I mentioned last week that we're going to be talking about in the Facebook group. By the time this airs, I will have the webinars scheduled in the Facebook group. So very excited about that. Please check it out. But what are you doing for Diabetes Awareness Month? If you've got something you'd like me to amplify, please let me know. You can email me Stacey at diabetes connections.com. Or you can direct message me on the social media outlet of your choice. We are at YouTube, Facebook, Twitter and Instagram. That's where Diabetes Connections lives. I'm on Tik Tok, or Snapchat or Pinterest. Oh my gosh. All right. Well, that will do it for this week. Thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I will be back on Wednesday. live within the news. Live on Facebook and now on YouTube as well. Until then, be kind to yourself. Benny: Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

There's a new documentary in the works, all about the struggle of insulin access and affordability. Rachel Dyer and Scott Ruderman, who lives with type 1, join Stacey to talk about their experience making this film and why they think it could make a difference. Pay or Die Film provides an inside look at how the soaring price of insulin in America is threatening—and even taking—the lives of people with type 1 diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription coming soon! Click here for iPhone      Click here for Android Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:22 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:27 This week, a new documentary in the works to show people outside the diabetes community the struggle of insulin access and affordability. Rachel Dyer and Scott Ruderman had an experience in Canada that made them say, we got to do this,   Rachael Dyer  0:42 where he was paying at home in America up to $450 a vial out of pocket then to have the same vial same manufacturer same everything brought to him for $21 in Canada and to watch Scott just break down and start crying there in the pharmacy and for myself as well. I was left in shock and disbelief, and we just looked at each other as we walked out and said it's time now to make this documentary.   Stacey Simms  1:11 We'll talk to Rachel and Scott who lives with type one about their experience making this film and why they think it could make a difference. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show always so glad to have you here. You know we aim to educate and inspire about diabetes with a focus on people who use insulin and insulin access and affordability as you heard is what this week's episode is all about. I'm your host Stacey Simms. My son Benny was diagnosed with type one right before he turned to almost 15 years ago. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting. And that is how you get the podcast In our most recent in the news episode. And that's the previous podcast episode two this one, I explained Lily's new move to drop the price of insulin lispro. Between that and Walmart's deal with Novo Nordisk, which lets Walmart price Novolog, same exact Insulet Novolog. a lot lower. We're seeing some interesting action on the cash price of insulin at the pharmacy. As I've said for years, though, I think it's going to take state and federal legislation to see real systemic change, you still need to jump through a lot of hoops, you still need to know that this is out there, you still need to find coupons in many cases, or you need to, you know, have really good insurance. There's a lot going on, and my guests this week are hoping that their documentary film will help educate people and make a difference. That film is currently in production. It is called Pay or Die. Here's a clip from the teaser, Trailer here: https://payordiefilm.com/film-teaser   Stacey Simms  3:17 If that last bit sounds familiar, that's Nicole Holt Smith, who I've had on the show her son Alec died after rationing insulin, and that audio is from her arrest at a protest at Eli Lilly headquarters in 2019. Today, you're going to hear from the filmmaker Scott Ruderman and Rachel Dyer. Scott was diagnosed with type one in 2009. He is an award-winning filmmaker. He's worked on documentaries for Netflix and Hulu in the BBC and HBO, his documentary short piano craftman won Best Director at the Madrid art film festival. He has a long list of credits, as does my other guest Rachel Dyer. She is an award winning journalist and producer who won a Southern California journalist Award for Best International feature, as well as a Clio entertainment grand winning entry for her work on the greatest showmen live the world's first live commercial for theatrical release the story behind Pay or Die in just a moment but first Diabetes Connections is brought to you by Dario Health bottom line you need a plan of action with diabetes. We've been really lucky that Benny's endo has helped us with that and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. They're published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one c within three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario's diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections for more proven results and free information about the plan. Scott and Rachel, thank you so much for joining me. I appreciate you spending some time with me and my listeners today.   Rachael Dyer  5:14 Thank you so much for having us. Stacey. We're really great, great time and looking forward to being here.   Stacey Simms  5:19 Let me start if I could with you, Scott, could you live with type one? Just briefly, could you tell us your diagnosis story, you were diagnosed as and as an adult? That's correct.   Scott Ruderman  5:29 I was in college, and it was around 2009. And it was my first semester in college I was I was going to Suffolk University in Boston, Massachusetts. And for about two weeks, I really wasn't feeling good. had all the symptoms, I say got very blurry, drinking a lot of fluids. I woke up one morning, and I just couldn't feel my legs from my waist down. It felt like they were being bags, I went to the school infirmary. And they they told me it sounds like type 1 diabetes are just diabetes. But they weren't. You know, they said it's probably not. But when they actually took a glucose reading, they left the room, the nurse came back in and she said, Look, I thought the meter was broken. But I checked my blood sugar and it's fine. Your blood sugar is not, it's not reading on the meter. So it's definitely going to be high, we want to send you an emergency room. So I went to Mass General, and I checked in and I was there for about a week. And then I resumed classes the week after it was it was a really hard week. But it was just one of those things. And I think a lot of type ones could relate that you just have to accept it. And the learning curve is it took a few years to really get on top of it. And then as the newer technology came in, it just got easier to manage.   Stacey Simms  6:42 So what led you all to this documentary? I assume it didn't happen as soon as you were diagnosed, Scott, but can you tell us a little bit about kind of what led you down this path, of course.   Rachael Dyer  6:53 So this has been a passion project for Scott for some time. And Scott and I actually met working together in the field. So obviously, we're both in the documentary business. And we just finished up working on a documentary together. And then I have a journalistic background. And I had done quite a few stories where I was looking at a lot of Americans traveling to Canada to get alternative medicine up there and their prescription medicine out there because it was a lot cheaper. I hadn't ever focused on insulin, but I had done other stories. So when Scott and I had met in the field and started speaking, Scott had told me that he was a type one diabetic, which I knew nothing about at the time, I knew very, very little about diabetes in general, let alone type one. And I was traveling to Canada because I'm Australian and half Canadian, and I was visiting my family. And I asked God to come with me. And I told him that I done some of these stories about, you know, Americans traveling up there. And Scott didn't believe me at first. And I thought that it was crazy what I was talking about. But we went, we went to Vancouver and we said, Look, I said why don't we just try. Let's see how we go. So he went to a few pharmacies and there and then the pharmacists were great. And we explained our situation, you know, Scott had shown brought in the insulin that he was on. And they, you know, were so generous and welcoming and kind and said to him, Look, what insulin Do you need right now for this trip? What can I help you with? And as Scott likes to explain it, he says it was like he was a kid in a candy shop, just to have that overwhelming experience with insulin that was so inaccessible, and so expensive in America to come forward and have it brought to him where he was paying at home in America up to $450 a vial out of pocket than to have the same same vial, same manufacturer, same everything brought to him for $21 in Canada, and to watch scotches break down and start crying there in the pharmacy. And for myself as well was I was left in shock and disbelief. And we just looked at each other as we walked out and said, It's time now to make this documentary. We have to do something about it. So that led us on our journey.   Scott Ruderman  9:19 I have to stay Stacy, to Rachel's point, it was a very emotional experience. It was one of those experiences where you feel joy but kind of frustration and at the same time I think I say this all the time. I really looked at my hands and for the first time I said Well, I'm feeling a little bit more accepted and cared for and thought out for then my experiences going to a pharmacy in the United States where I need more insulin and my prescription. You know, it's not it's not fully made out for the month yet and they're kind of like no, you have to come back next Tuesday and I can walk out of there and they know I could potentially die without my Insulet So it was just quite an experience. And to Rachel's point again, yes, we both said we're making a film about this.   Stacey Simms  10:07 So it seems to me that just from what you've said, it looks like it changed a bit though from Why can't we get more affordable insulin in the US? Why can't you like you can in so many other countries walk in and buy what you need to people are dying? And I'm curious, did you realize that as you started this project, or was that always part of the story all along?   Scott Ruderman  10:27 For me, when I was doing the initial research, you know, when I realized, the first thing I said, in my head, I wonder what people are doing that can't afford it, and where they're going, and upon my initial research, you know, obviously, people that can't afford to go on Facebook, you know, the clinical black market and media. But then I started reading all these stories about people rationing their insulin, and going into decay and dying just to make ends meet. And that's where things got a little bit more serious. And like, Whoa, this is not just being able to afford it, people are actually losing their life because they can't afford it. And that's kind of where the film kind of took it. It's kind of approach was that this is an issue and people are dying.   Stacey Simms  11:09 Rachel, what do you think the film is for? You know, it's very difficult, as you probably know, and as you live with type one, Scott, it's difficult to explain any of this to people who don't live with it day in and day out. I'm curious who you're producing this for, of course, and   Rachael Dyer  11:26 I think, you know, with anything, that is a huge challenge with trying to firstly explain an illness, which a lot of people do not live with. And also to, to differentiate between type one and type two, that is obviously a challenge in the beginning. But you know, there are huge differences. And there are huge differences, which we do point out in the film. Obviously, as you know, with your son living with type one as well, it is a life threatening illness, and you are insulin dependent. So you know, we explore that, but also to exploring the medical system in America, which, as anyone who lives here can understand that it is very complicated, which they love for it to be to make everyone think that this is something that we just have to live with. But for me, being an Australian and Canadian, I think, the shock factor from an international audience and not having to not only live with a debilitating illness, but also to then navigate this healthcare system is what we're trying to present throughout the film as well and show the microcosm of this healthcare system in the United States. So I would say that this film is being produced not only for the type one community or the diabetes community, but for not only also to a domestic and international audience to show what is going on in the states and how unjust it is, and how unfair it is for people just to not be able to access life saving medication and medication that in a lot of other countries around the world is affordable and accessible, and you shouldn't be dying because of it. So it's for everyone.   Stacey Simms  13:11 I'm curious, too. It's so hard to get this message to be clear, because our healthcare system is so complicated to the point where you can go on social media any day and see people within the diabetes community arguing about whether or not people can afford insulin. In other words, you know, if you start any kind of Twitter chain or Facebook conversation, you'll have everything from you know, mine's covered. 100%. I don't understand what your problem is to why don't we just get a coupon to the president lowered the price of insulin? No, the president raised the price of insulin. It's so confusing at Scott, did you focus on any of that conversation? Or is this more focusing on individual stories? Right back to Scott answering that question, but first, Diabetes Connections is brought to you by Gvoke Hypopen and you know, low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out. There are a lot of symptoms that can be different for everybody. I am so glad we have a different option to treat very low blood sugar Gvoke Hypopen is the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle before gvoke. People needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand to find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit g vo glucagon.com slash risk. Now back to Scott answering my question about whether the film looks at the bigger system or focuses on individual stories.   Scott Ruderman  14:56 That's a great question. This is a question that's brought up a lot as well. Let's just within our team, you know, this film is really, through, you know, the stories of people that are struggling. And we're capturing those human stories and seeing kind of the lengths, they are going to try to get access to the medication they need financially. And through their stories, we will kind of go into a little bit about the complex system, as well as politically what's happening. But the idea of the film is, this is a very character driven film. And we want people to be able to familiarize themselves with these characters and be able to, you know, say, well, that could be me, or that could be my friend's daughter who has type one or, you know, not even just type 1 diabetes. I mean, there's other medications that are so expensive, that anyone can kind of put themselves in those shoes and be like, what do I do if I can't afford medication. And that's really the shock factor we want to bring through in the film and urgency, because we can go on and on and on and talking about the complexities. But the problem is, it's never going to be solved, unless you're faced with the realities of it yourself. So bringing that to the viewer of making them feel like they are in the position of what our characters are going through is the goal to show the reality of the struggle   Rachael Dyer  16:16 to Scott's point that is very much the focus of the film, but we do have experts that we are speaking with that, breaking down the complexities behind it and showing how the system works. And with the experts that we have, they do actually show that the complicated system is being put there for a reason to make people feel like it is more complicated than what it actually is to make it so confusing that people just throw up their hands and say, I can't be bothered, this is just the way it is, which is certainly not the case. And it doesn't need to be the case. So you know, we do have the experts that have come in to break down that process and make it as simple as possible so people can understand this is not the way that it needs to be. Yeah,   Stacey Simms  17:03 that's great. Scott, what conclusion do you come from after this? I mean, I agree with Rachel, it's complicated, because it's designed that way. I do think the government will eventually get involved. We're seeing states now start making some changes. I'm not sure the federal government will ever take action. But you know, is it going to be a change in list price? Are we going to need to get rid of pbms? You know, did you draw any conclusions from this?   Scott Ruderman  17:28 You know, I think one of the the challenging things is the barriers of entry for just anyone trying to make a change with what's happening. And part of making this film is to kind of shine light on how complicated this system is. And no, this is this film gonna be the ultimate change? No, but it's trying to make the world a better place and down the road, do I think Insulet will be free? No. But I think just recently in the media over the last few years, this issue has been hot. And I think people are catching on and people are realizing that there needs to be more, you know, regulation on this. And prices need to be more affordable. I mean, think about when insulin, the discovery of insulin and Frederick Banting. I mean, the whole reason he sold it for $1 was so no one can make a profit of this. And I think looking at where we are today, I mean, discovery, insulin was a breakthrough discovery for the United States of America. And it's been celebrated. But if people can't afford it, and they're dying, because of it, that's going against the whole idea of making it affordable with bandings purpose to selling it. Hopefully, this is just a wake up call to say, hey, insulin was to to help people not to make profit off.   Stacey Simms  18:46 And I before Rachel jumps in, because I know she's half Canadian. Dr. Banting was Canadian, so we have to give the props. I know, I know, you meant you know, the manufacturer in the United States, and really purchasing getting all of that. But tell us a little bit if you could Scott about maybe some of the you said characters tell us a little bit about the people in this piece,   Scott Ruderman  19:05 of course. So you know, we have some principal characters, we've been following Nicole Holt Smith, who lost her son Alec, he was rushing his insulin, he couldn't afford, you know, the monthly cost. And he, he went into decay and died. And she's been fighting on the Minnesota State level to try to get access to emergency insulin in Minnesota. And we've been following her kind of battle on the state level. So that's one of our main stories. Another story. We've been following a mother and daughter who've been living out of their car because they need to make ends meet and you know, they're both type one, and they couldn't afford their insulin. So unfortunately, they were living in their car trying to survive, and they're the ones that crossed the border to find cheaper insulin in Canada. So we followed that story. And then we also have another story of a newly died This is during COVID. And the reason we brought that story in is we needed to, we want to cover all angles, we don't want all our characters to be this repetition of, I can't afford insulin, it's they're all struggling in different ways. And our COVID story of being diagnosed on COVID is, is to show the reality of what it's like and how your life just flips with type 1 diabetes, the management side, the physical side, and then again, the financial side. So it's all those aspects are in that story.   Rachael Dyer  20:29 Yeah. So just to Scott's point, I think that what we're trying to capture with all of our contributors and following their stories is it is just that it is a financial, emotional and physical burdens that, you know, everyone who is diagnosed with Type One Diabetes goes through on a daily basis. And I think that is the main emphasis that we really focus on throughout the film. And you see it through the stories, you see it through the emotional, physical and financial burden that they go through. And I think where Scott and I work well at both together, but our style as documentary filmmakers, is we are a very small footprint on the ground, a lot of the time, it is just Scott Nye traveling together. So we have a very personal relationship with the people that we film with, and they open up their world and they let us in and we become very familiar with who they are. And you see the heartbreak, you see the tears, you see the joy, and hopefully that is what is going to come across on film and and in the stories and if anyone has a daughter has a mother has a son has a child that is struggling in any capacity, whether it's with type one or something else, I feel as though that they're going to be able to relate. And that's the purpose behind these special stories that we're bringing to the screen.   Stacey Simms  21:58 Scott did anything surprise you, as you talk to these folks, when you live with type one yourself, I'm curious if anything that they said or anything they shared, took you by surprise,   Scott Ruderman  22:07 not only surprised, but as we kept going back into the fields, and filming, I think, you know, realizing that I am a type one and that this could happen to any day just kind of drop the reality perspective back to me. And I'm feeling what they're saying. Because, again, this I could be in this position. as a freelancer alone, covering my own health insurance, a bad month puts me in a bind. I'm actually the subject of my film in a way. So it's a very interesting connection. And it takes a toll on me. Every time I go and film, I need space after to just process what I'm hearing and what I'm going through, I think filming with Nicole Smith hope of being a mother of, you know, losing her son, I think my mom like what my mom would go through. If I were to pass away because of this and following Nicole. And you know, that's where you kind of see a real mother's purpose of just she's not going to stop being Alex's mother. By doing that she's going to continue to try to make an example that this is not okay, and be a voice for all the mothers out there that do have children diagnosed with type one and could be struggling because when you turn 26 years old, and you're off your parents health insurance as a type one, it's a new learning curve. It's a financial learning curve. And it could be very difficult. It could mean the job you get where you apply. It's not what you want to do in life. It's what can I do, that's going to keep me alive so I can afford, you know, for my insulin to keep me alive. It's a very scary and Nicole always says it's that number 26. And I'm only 31 years old, and I was 26. I remember that moment. It's really hard.   Stacey Simms  23:58 Before I let you go, unless each of you this question, why do you work in documentary? This is a it's such a different type of filmmaking. It's so personal. As you said, Scott, you kind of have to recover if every time you talk to somebody, why do you do it?   Rachael Dyer  24:12 I'll jump in. I think for me, as I mentioned earlier, my experience and background was as a journalist for over 10 years and you know, I dealt with some really challenging and and hard hitting stories. For the my first four years in America, I was traveling the country and working in breaking news. And for me, with the 24 hour news cycle that has just become so relentless, my personality is one of which I just had to stop being on the ground for less than 24 hours and seeing these people let's hop right and wanting to share their story more and so naturally, I just transitioned over to wanting to be in the documentary space to spend money. more time with individuals learn about who they are and share these really important stories on the world stage. Rather than just jumping in and out for a one and a half minute nice cars. Yeah, for me, it was just important to be there with the people, and spend the time sharing these really relevant stories.   Scott Ruderman  25:19 For me. I love storytelling, I think one of the greatest things about documentary is to every project, you're in a different world, you are discovering the lives of people and what they're going through, and to be able to film that and see transformation and see someone change along the way along the process is extraordinary. For me, it's also extremely challenging. And being in a room with a camera and filming people at on the moment. It's in this sense, you know, I like to say in fiction film, you know, the director is God. But when it comes to documentary and nonfiction, God is the director, and you don't know what's going to happen in front of your lens, and to be there and capture a moment that could only happen once and walk away with that and be part of that is what keeps me coming back to make more documentaries.   Stacey Simms  26:11 And in general, and maybe just for this one, too. I'm always curious, how much more do you film than you use? Right? I mean, it's got to be hours and hours and hours that you're filming that you're not going to use?   Rachael Dyer  26:24 Yeah, I think that's always the fun part. The fun part for us, but definitely not the fun part for the editor when they have hours, and hours and hours of footage to go through. But yeah, like Scott said, I think that the difference between documentary and true documentary is that you do not know a lot of the time what is going to happen, you can only prepare so much. But there is a lot that is unpredictable and doesn't happen and you you know, you want to film that you want to see the change and evolutions in these people. So again, I think it depends on the documentary, the subject matter, but and also to where you initially thought the film might go might not be how it ends up in the Edit. So we're not at that stage yet. So I think we will see but you know, there is a lot that we have filmed but a lot of special moments to within that.   Scott Ruderman  27:22 Yeah, another challenging thing about making a documentary. And you know, I just also want to point out there this documentary, until we started actually securing funds was funded out of pocket by me. And one of the hardest things is, you know, we have characters across the nation, West Coast, mid coast, and one of the hardest things is always being there at the right moment. And you know, being able to jump on a plane with all the gear get there and be there in time to capture it. That's a huge cost factor. And you know, that's a decision you have to make. That's one of the challenges about document and you're not with people, you know, we've been filming this for a few years now we're not with our characters fully on for years. It's it's coming back and going. And there are moments where it's exhausting for subjects because we're there and we have to take a break. And then we come back and you know, new development occurs. And that's the beauty of it is following and following and following it seeing that transformation.   Stacey Simms  28:17 Well, Scott and Rachel, we really look forward to the completion of this and seeing it and spreading the word. Thank you so much for joining me and sharing your story and we look forward to the release of the movie. Thanks. Thank you watch. You're listening to Diabetes Connections with Stacey Simms. More information at Diabetes connections.com. I will link up the website to Pay or Die and any other information about the timing production, that sort of thing. Of course, there's a transcription along with this episode as there is with every episode since the beginning of 2020. Just a real quick note about our experience with insulin and coupons. And I've shared this story before and it's been about a year now I realize that we decided we had changed insurance right around this time last year, and they wanted to change us from human log to novolog. But he's been doing great. I did not want to make any changes. I mean, you know how it is when things are going well. So we decided we had a little bit of a stockpile, Lino, let's fight it. And it took me a full two weeks of spending a lot of time calling the pharmacy calling my doctor we got some coupons I went to get insulin.org and went through that process and you know, immediately printed out a coupon for human log and said this will be $35 a month. It was not that easy. I took it to the pharmacy and they said nope, it doesn't scan so we had to jump through a lot of hoops. What happened for us was we got a new prior authorization from Benny's endocrinologist and the pharmacy ranted as a new prescription. So that helped us and you know what, I'm afraid knock on wood is word As I'm looking around here, we have not had to do anything else it renewed automatically for 2021. And so far so good. I'll keep you posted. if anything changes, it was a lot of hoops to jump through. I'm grateful I had the time and the knowledge to do so I know not everybody can spend that much time and has that good of a relationship with both their pharmacist and their endo. What a mess. Alright, more to come. But first I want to tell you about another one of our sponsors Diabetes Connections is brought to you by Dexcom. You I want to talk about control IQ. This is the Dexcom G6 Tandem pump software program. And when it comes to Benny, even though I hardly expect perfection, I really do I just want him happy and healthy. I have to say control IQ the software from Dexcom. And Tandem has exceeded my expectations, Benny is able to do less checking and bolusing. And spending more time in range is a once these are the lowest they have ever been. This isn't a teenager at the time when I was really prepared for him to be struggling. And everybody's sleep is better to with basal adjustments possible every five minutes, the system is working hard to keep him in range. And that means we hear far fewer Dexcom alerts, rural sleeping better. I'm so grateful for this, of course individual results may vary. To learn more, just go to Diabetes connections.com and click on the Dexcom logo. If you're listening to this episode as a first airs, it's the first episode of October of 2021. It's also the beginning of a stretch of really, really busy weeks for me, I am hoping to have an episode every week this month. But please follow me on social it is possible, especially two weeks from now, that's kind of iffy, but I'll see what I can do. I am traveling to New York this coming weekend, I was supposed to go to friends for life White Plains, that is now a virtual event that's going to happen in November. But I'm still going because I have family up there. And I have some plans. So I'm really excited. And then the phone week I'm going to shoot podcasts live, which is a female podcasting event that I've been working on. I'm working with them to help with that event. So I'm really excited about that. And then later in the month, my husband and I are going to go away to celebrate a big birthday of mine. And in between I'm trying to make room for lots of just fun local stuff where I am because yeah, I mean, I don't usually celebrate my birthday all month long. But hey, I'm turning 50 I gotta tell you, I mean, are you Is anybody excited about turning 50? I'm not thrilled right about getting older. But man, I'm thrilled about getting older. I really have mixed feelings about this, because it is a milestone. So I'll be sharing more maybe on social media, we'll see. But I do have a couple of fun announcements coming up. They will be mostly in the Facebook group, or at least they'll be first in the Facebook group. So if you're not in Diabetes Connections, the group please make sure to jump in there. end of October, maybe mid to late October. I've got a couple of announcements. I need your help with some upcoming projects. It's going to be a lot of fun. All right, thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I will be back with in the news that's gonna happen every Wednesday at 430. Even as I'm on the road, I've done it before. I don't mind doing it again, from my friend's homes, my sister's house or from hotel rooms. I like doing those in the news episodes live. So those will continue. I'll see you back here in just a couple of days. Until then, be kind to yourself. Benny  33:12 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Kevin Covais was one of the youngest contestants on American Idol; he was just 16 when he made his debut during season 5. He'll share some behind the scenes stories including managing low blood sugar during a live performance. Diagnosed with T1D at age 11, Kevin has been working steadily as an actor. We'll talk about working in Hollywood with diabetes – and what that's been like during COVID, more about American Idol, and how Kevin found himself mentoring other kids with type 1. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription below Click here for iPhone      Click here for Android   Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 This week, actor Kevin Covais was one of the youngest contestants on American Idol back in season five, he'll share some behind the scenes stories, including managing low blood sugar during a live performance. Kevin Covais 0:38 And I'm singing and I just like, I can't wait for this thing to be over. I can't wait to stop singing and get the critiques from the judges that I'm not even gonna really listen to you because I got to get off the stage and I got to get some juice or I gotta get some tablets. I gotta take care of this. Stacey Simms 0:49 He was fine. And since Idol , Kevin has been working steadily as an actor. We'll talk about working in Hollywood with diabetes and during COVID more about American Idol, and how Kevin found himself mentoring other kids with type one. He has advice for parents too. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, always is so glad to have you here. Hi, I'm your host Stacey Simms. We aim to educate and inspire about diabetes with a focus on people who use insulin. And my guest this week is Kevin Covais, diagnosed with type one just as he turned 11. Kevin is best known for American Idol as you heard in the tease there and the Disney Channel show Good Luck Charlie, where he played the character Victor. He is a steadily working actor with roles in Transformers and this is us, the rookie, NCIS Los Angeles and more. I put some pictures of Kevin in the Diabetes Connections Facebook groups, you can kind of see him on set. And he is appearing in the new Netflix series on the verge, which is out this month. I thought it would be fun to just play a little clip of Season Five of American Idol where Kevin appeared and this was back in 2006. As I said he was one of the very youngest contestants. So here's a little bit of him from back then. (Kevin sings) https://www.youtube.com/watch?v=dc5ec3te75I Stacey Simms 2:44 used to watch idol all the time. And as I confessed to Kevin, it has been a while. But what a big show, right? And you'll hear Kevin during the interview mentioned Elliott Yamin who was also on season five and also lives with type one. I got to meet Elliot a couple of years ago at a touched by type one conference he is still performing writing music. He's now a dad, I'll put a link to Elliot stuff in the show notes as well. That of course will have tons of information about Kevin, but I just thought that was really interesting because to me, I don't know it seems like yesterday but of course 2006 was the year that my son was diagnosed, Benny was diagnosed right before he turned two. He is now almost 17 which is I mean, we've lived with diabetes. Now I've been part of this community for 15 years in just a couple of weeks. So 2006 kind of was a long time ago and kind of seems like yesterday to me. Alright, Kevin's interview coming up in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen and our endo always told us that if you use insulin you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice but a very low blood sugar can be very frightening which is why I'm so glad there's a different option for emergency glucagon it is Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle. You pull off the red cap push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon.com slash risk. Kevin, welcome to the show. I'm really glad to talk to you. Thanks for making some time for me. Kevin Covais 4:26 Stacey. Thank you for having me. I'm so excited to find we've been talking about this for a while I'm so I'm so happy to finally join the program. It's great. Stacey Simms 4:33 Awesome. Yeah, it's great that we finally connected Gosh, so much to talk about. We connected everyone We see each other every year add friends for life. Yeah. And I was so happy we were able to do that this year. We'll kind of see what happens going ahead. But before we get into all of that, do you mind if we just kind of take a step back and look back? I mean you haven't been on the show before and I'd love to kind of revisit the early days of Kevin Kevin Covais 4:59 Spacey. I would be disappointed if we didn't do that. So let's, let's dive in. Let's do it. Yes, please. Stacey Simms 5:04 As I was asking that I was thinking about American Idol but I should probably go back further. You were diagnosed when you were you were a kid. You were not even 11 years old yet, right? Yeah, it Kevin Covais 5:13 was just prior to my 11th birthday symptoms leading up. Yeah, my birthday is at the end of May. And I just remember that entire month of May so vividly. You know, obviously, you think back to childhood and, you know, memories here memories there. But that month just stands out in my mind so vividly. Symptoms throughout the month, parents wandering out what's going on with Kev? what's what's happening, you know, maybe an infection this that bring me into the doctor, several days prior to my 11th birthday to get the diagnosis of type 1 diabetes. Yeah. Stacey Simms 5:41 Did you spend your birthday in the hospital? Kevin Covais 5:43 I think it was. So it was it was several days after my birthday. So yeah, it was the entire month leading up to the birthday. And then it was, yeah, right. At the start of June, I was putting so this was several days after my 11th birthday that I was in the hospital. And just you know, you hear the doctor tell you and your kid and I, you know, I immediately I broke down and cried. I didn't know, I didn't know what I was dealing with. I you know, you hear the word diabetes and you know, your mind escapes, you starts running around all these different things. And then he you know, the doctor, you know, kindly explained to me, now this is something you're going to be able to manage your life. It's obviously going to be a great deal of work. But this is something you live with and something you manage. And then from there, I learned everything over the course of the next week and being in the hospital and getting treated. Yeah, it was. It was a month like no other though. Yeah, that's for sure. Yeah. Stacey Simms 6:27 So your kid, you're diagnosed at a time when frankly, it's the as I recall that time that early 2000s. It's the time right before everything really started changing. Absolutely. As I look at I mean, Ben, he was diagnosed in 2006. They were like, we've got this amazing thing called Lantus. That's just been approved for kids. Yeah, you know, and now everything seems so different with the technology. What was the first kind of technology or routine that you were on? Gosh, you Kevin Covais 6:54 got me thinking back to the pre Lantus days of time? Yeah, it's it's wild. For me. Taking the injections, taking the daily injections, I will go ahead and say I'm not currently on the pump, that I am one of these those rare rare people that uh, that takes daily injections. I have a CGM. But that's, that's my preferred way of doing it have been doing it that way for years. But yeah, starting out being diagnosed taking human and human log each and every day. Yeah. And those pre Lantus days. And, you know, they think back to those syringes before you have the pens and the newer technology and the things that make it so easy now, so, so accessible, and thinking back to a time before, you know, we had some of those advancements, it was definitely interesting at the start for those first couple of years. Stacey Simms 7:35 Well, is that the kind of and I say technology to encompass whatever you're using shots? Oh, of course. Yeah. So when you're talking humulin, you have a log, did you have to kind of eat on a set schedule? Or were you okay to kind of inject when you want it to eat, Kevin Covais 7:51 you know, that really came with adulthood, that sort of injecting when I wanted to eat and the accessibility I remember, as a kid, it was, it was the preference of my doctors to have that set routine. I remember going in and you have a regimented schedule of three meals, several snacks, a snack at an after school snack at roughly 3pm. And, and one prior to bed 9pm at night. And yeah, that was for a while. It's obviously insulin matching. Exactly what you're what you're ingesting exactly what you're eating and set times. It was all very regimented. For me those first couple years of my life. Yeah. Something. I bet. I bet it's a trip to think back on it really is. Yeah, Stacey Simms 8:30 it must be I mean, I just think, you know, it's there's no easy age to be diagnosed with diabetes. But 11 you're just starting out that like, tiptoeing into independence. Yes. Middle School. Do you remember? Did your parents kind of give you a long rope? Were they very protective? I don't want to be too personal. Kevin Covais 8:48 Please, please. They were unbelievable. I'm so blessed to have the mother and the father that I do. And the support system that I do, I think they handled it differently. I think, with my mother, I think not that there was more trust, I think, was maybe a little longer rope and trusting me to do the things I think my father was, you know, very concerned at times, but you know, rightfully concerned about, you know, what I was taking and this and that. So there were I think there were several different schools of parenting going on. But together, they complemented each other so well. And it was I just knew that they were always there for me during those frustrating moments, those highs, those lows, quite literally, obviously, where it's just they were there All the while, but just like an amazing support system site. I think they went about it slightly differently. But we're, you know, managed to still be on the same page because, you know, nobody handles You know, one set situation quite the same. So, I was just incredibly fortunate. We just got informed, it's like we figured out what it was and there was a moment of kind of bowing our heads and being frustrated being sad. And then we were like, Alright, what do we do about this and got in the hospital and took care of and met up with all the doctors and got assigned the endocrinologist and and took it from there. Yeah, Stacey Simms 9:53 your parents must have given you a long rope because five years later, you auditioned for American Idol right when you're 16 Kevin Covais 9:59 I was a baby I mean, I'm still a baby. I'm just an older baby. I'm still probably just as immature. But now I'm in my 30s so I don't really get away with as much. I I was 16 years old SJC when I did the show, I can't believe I did it at all. And I can't believe I did it when I was when I didn't know any more. I was just a child. Yeah. It's so Stacey Simms 10:17 funny. So okay, so you're my son's age. Kevin Covais 10:23 And your son's a child. I'm sure he's way more mature than I was. Stacey Simms 10:28 But, you know, you did let him just go. You know, he took an international trip for a month but he was with you. But he was with a bunch of people who, you know, we're we felt very safe with of course, what was the deal with American Idol because you didn't just go to one city, right? I mean, audition different cities take us kind of through what happened. Kevin Covais 10:45 It was just the journey of a lifetime at 16. I audition in New York. I'm from from Levittown, New York, Long Island, New York, and I audition up in Boston, I turned 16. And as I tell the story, my mom and I would watch idol from the Kelly Clarkson days. I ultimately was on season five. But you know, Kelly Clarkson wins the show, season one, my mom and I, it's must see TV. We tune in every week to watch the show. And my father was never a big fan. And I was a singer, around the same time that I was diagnosed with diabetes at the age of 11. That's kind of when I joined the chorus and developed a love for singing and acting in the school plays and whatnot. And he'd walked through the room and we'd be watching idol. And I would tell him, I said, you know, one day I'm going to do this show. And he's like, yeah, okay, we'll see. And I turned 16. And again, just to echo how incredibly supportive my parents have always been, they've always been by my side, I turned 16. I go up to Boston to audition for the show. When there were no tri state area auditions in the Greater New York area. They take me up to Boston, they take me up to Gillette Stadium where the New England Patriots play, they're having massive auditions. 15 tents set up on a field, a judge at each tent and forward a time that bringing us down and they say Sing, sing, sing, sing, you sing a little bit of a song, they cut you off whenever they feel like you either make it or they send you to the exits, we see a herd of people go into the exits. And I was one of the lucky few that day who they said you know what, we're gonna give you another audition, we'll come back and see the executive producers, so on and so forth all the way up to the main judges in the city of Boston, I see the original three of Simon cow, Paula Abdul, Randy Jackson. And eventually I make my way out to Hollywood. I get past that round, and made it to Hollywood. It was my first time ever on the west coast. I get to go and I'm one of maybe 180 people auditioning out in Hollywood to try to get on those live shows where ultimately I landed and Gosh, got to somehow got to the top 12 my seats I don't even know I don't even it was honestly Stacy, it was all blur. I don't even know how I did it. I don't know. I mean, I remember it. But it was just such a roller coaster and such an emotional ride in such an exciting ride my lights? Yeah. Stacey Simms 12:39 When I'm researching to talk to you, you know, going through the American Idol season five and kind of looking at what was written around that time. There's no mention of you having diabetes? Kevin Covais 12:50 No, no, you hiding it. Stacey Simms 12:57 Right back to Kevin finishing that thought. But first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management, with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my dario.com forward slash diabetes dash connections. Now back to Kevin talking about why he didn't share his type one with the American Idol audience. Kevin Covais 13:46 Absolutely not hiding it. This is how little I just knew about I just wasn't aware of anything. I was so green to the experience that like now as an actor of 10 plus years as a mainly transition to acting at this point, which I'm sure we'll get to a bit in a little bit. I didn't think about it from a perspective of Oh, wow, what a stage to raise awareness for this thing. I was on the show. I made it to the top 12. And one of my best friends from the show is Elliot Yamin, fellow type one, and you know, great guy, great personality and just just a heck of a voice. Oh my god, the guy can sing the doors off the place. He's unbelievable. And we auditioned in Boston together. I was so nervous until my final few weeks performing live on the show. I just think I went in and I would do the interviews and I would do this and I would do that. And it wouldn't even occur to me like man, you should really bring this up. I wasn't hiding it. I wasn't ashamed. I think for me, it was just such a normal part of my life that I'd been accustomed to for five years. And I was like, Oh, yeah, well, I'm you know, I'm no different than anyone else. I'm just dealing with my type 1 diabetes, you know, all the while. And it's it's a regret not from a sense because again, I wasn't hiding it. It's a regret because I realized how big that platform was and Oh man, I should have said something. And it was and it wasn't until after the fact that I was like oh wow, there's like a lot of opportunity here and when I you know start to do very As events for the jdrf are really dive into work with the Diabetes Research Institute several years thereafter. It wasn't until that point, when I kind of got older. I was like, Man, this is an incredible opportunity to raise awareness. And, you know, use your platform. And I wish I could go back and tell 16 year old Kevin that I really wish I could. Stacey Simms 15:16 Well, I wasn't even thinking of it in terms of advocacy, which is a terrific point that you make, but I was thinking about it as your 16. And, you know, to say, Well, I need extra help, or I need you to know that. Although you weren't beeping at the time, you probably didn't have a CGM. No, not yet. Right. You might not just you know, and I think and I can totally understand that, because that's how my son is, you know, he'll tell people to be safe, you know, spending the night and we're not there. And he'll say, Here's to this and that, but he's not gonna say, hey, by the way, just as dropping into the conversation, yeah. I don't think a lot of 16 year olds who are let's just say it like that, I think. And you've already kind of mentioned it, it just seems like it was such a normal part of who you were. I think that's very commendable. I think that's great. Kevin Covais 16:01 Thanks. Yeah, I'd like to think so as well. I'll tell you, every staff member on idol, the producer, the up to the producers, up to the big time people behind the show, they knew I had type one. I always made it a point to you know, school teachers, obviously, you're telling them okay, hey, look, if I need to go to the nurse, this is why I'm not. I'm not trying to get out of taking this exam. It's because I have a legitimate low right now. So the people in my life I was telling, it never occurred to me when the cameras started rolling to bring it up, because it just didn't occur to me. I was like, Oh, yeah, no, I'm telling the people that are directly affected in my life about this. It didn't, it didn't even dawn on me to inform the audience about Stacey Simms 16:36 it. Did you have any issues on Idol with diabetes? And I did, Kevin Covais 16:40 yeah. There's a story that stands out. I don't mean to laugh. It's just some hilarious stories. When we were laughing. We This is how we do it. This is how we deal sometimes, you know, you know, you know better than anyone as to why it's, it wasn't an issue, up until the live shows. Really, I think, for me, it was always Okay, we're testing constantly, we're making sure we're correcting prior to getting up for big performances, or whatever I got to perform during Hollywood week, I'm making sure I'm good to go in preparation for those performances. It wasn't until the third live show there were three weeks of semi finals on the show. And I get up there on the third week, and I'm waiting in the wings to be the next one up and I I know where my blood sugar is, you know, without the CGM. I'm one of the lucky ones who can, you know, 21 years of this thing I can tell where I am. If I'm running high in the two hundreds, I feel lousy, and I know it. I know where I'm at. If I'm low, and I have the shakes, and you know, you feel a little disoriented. I know that too. And I could feel myself dropping and dropping quickly. But I'm up on stage and it's live television. So I go up and I perform I perform. Don McLean's stories of Vincent starry, Starry Night old ballad that one of my favorites, Josh Groban read it, and in more recent years, and I'm singing, and I just like, I can't wait for this thing to be over. I can't wait to stop singing and get the critiques from the judges that I'm not even gonna really listen to because I got to get off the stage and I got to get some juice or I gotta get some tablets. I gotta take care of this. It was the most surreal thing to be experiencing that in that moment. I got through it. And the performance wasn't terrible. I think it was, I think was one of my better ones. So I was on for five weeks. And I I put it up in the maybe on the top two or three of them. And yeah, but that did happen on live television, which was just the most surreal thing. Yeah. Stacey Simms 18:18 Wow. When you got off the stage Did you like eat everything? Oh, yeah. Kevin Covais 18:22 I went to town state. Oh, yeah. Are you kidding me? I was like, Yeah, let's go. I was just, it was bizarre. It was just a bizarre, but it was just a wild, wild thing to experience. And that's kind of telling for anyone who deals with this is that you can prepare to the best of your abilities. And that you know, that unexpected lower high could still come about, you just have to do your best but there's no there was no shame. I didn't feel any shame after that. I know. Look, we're all human. And this is this is a normal part of the day in and day out experience. It's just so unique that to be in the position that I was in to have experienced that at that moment was very unique. Yeah, yeah, that's Stacey Simms 18:57 interesting, too. That I forgot. Elliot. Yeah, I mean, was the same season. Kevin Covais 19:00 Oh, yeah. Yeah, yeah. Oh, man. He was I was rooting for him after I eventually got bounced and got kicked out. You know, after I got eliminated from the show. I was I couldn't get kicked off now. I was a good kid. After I got eliminated from the show. I was I was rooting for Elliot anyway not I mean, obviously the bond we shared as as he was a fellow type one and we you know, related and became fast friends over that, but I just thought he had the best voice that of anyone that sees and I thought his voice was you know, another league but it was a it was a heck of a year and a heck of a ride for it really was Stacey Simms 19:30 Do you still forgive me? I don't know if it's even on the air. Do you still watch Kevin Covais 19:33 idol please? It is not really Oh, no, it's been going on a while sometimes it's like sometimes you gotta know when to let go. I like emotionally said goodbye to the show. I think it was about five or six years ago now when when Fox had its last airing of the show. So I kind of had my emotional goodbye with the show. Then I had a bunch of friends over to my place and we watched it and we were you know we're they were laughing about stuff. Remember in my time on the show years ago, we had a we had a grand time and then you Goes via Idol s off the air and then ABC is picking it up. Because you know, why not? Why not pick it up? And they've had some successes with the ABC run and some some very talented people on the show but I think there's just there's so many options now so many things to watch. You got the voice you got to America's Got Talent, things of that nature. It's tough. It's tough to keep up with all of them now stuck to keep up. Yeah. Stacey Simms 20:20 So right. So after idol, you change from being a singer to acting? What What happened? Like, what were some of your first jobs. I know you were at the Disney Channel, and you've been guest starring spots. So if you could tell me, like when you started? Kevin Covais 20:32 Yeah, I saw I finish idol. And I'm really honest about these things. I thought, going into the Idol experience as everyone does. I want to be a recording artist, I want to make records and I want to do this. And my love for music. And my love for singing is never escaped. It's really I'm just being honest, it's more of a hobby. At this point. It's more of something for me. And if I record something, it's more for me or potentially to work, collaborate with friends or right with fellow musician, friends. But I got into the acting I remember I got done with idol and I got management back, I found representation back home in New York, there was a real interest, I think people really found me to be a bit of a character on the show. And in a good way, not a bad way, of course. And that led to auditions. And I started going out in my first movie was a real silly kind of raunchy comedy, I wouldn't recommend anyone listening to this podcast, watch it, it was a movie called college. It was with a Nickelodeon star by the name of Drake Bell and various other funny people. And, you know, really funny people in the cast. And we had a blast making it. And this was my first taste of a film. And I came to know that Deb Hagen, our director on that project, she was at home with her family reading the script of this movie, she'd just been assigned as the director. And she's watching idol with her family and I'm on the show. And she's reading the script. And there's this you know, kind of nerdy character named Morris super this kid with, you know, part of gold sweet kid, but you know, just kind of reserved and whatnot. She's reading the character, and she's looking at me on the TV, and she's like, Man, this kid would be, I want this kid to play this role. And I never knew this and takes a while to make a movie. And about a year later, I within that year, I get done with Idol I go back home, I'm doing my senior year of high school now, because I did Idol as a junior in high school. I'm back in Levittown, New York, I'm back at Island trees, high school over there. And, and I'm doing self tape auditions, I get a manager at home who starts sending me out for acting, saying there'd be quite a bit of interest if I were to pursue this. And I put myself down for this movie college and put a self tape down and I got the roll, I got the roll, which offers self tape, which is like, You're so lucky to get that it's a rarity. And I was very fortunate. And I had a fun time making that one. And then that led to a bunch of other opportunities got to work with Lindsay Lohan on a on a television movie called labor pains, which was a blast, a really stacked comedic cast. And that one, you know, that's silly movie, but a lot of fun. And then since then, the big one was good luck, Charlie, for me got to be on the Disney Channel and work on eight episodes of good luck, Charlie, in the early 2010s. And, and then from there, just a slew of fun guest stars. And I've just I love it. I love every minute of it. I don't know how it all came about. I think for me, I always love to act adjust as much as I love to sing. But I never I wasn't savvy enough at the time of doing idol at 16. Again, I was so green, I didn't even think like oh, you can use this idol platform to maybe swing a few meetings or this or that and try to try to get your way into acting. I don't even think like that. If again, if it was today, if I was doing that in my 20s or if I was doing that today in my early 30s. Like obviously I would have had that mindset but you know, I didn't know I didn't know anything like that. So but just so fortunate that it came about and I love it. I love being on set. I love playing these characters escaping into these fun people that are nothing like me. It's fun. Stacey Simms 23:35 Yeah. And you've been you know, you continually work I mean, yeah, it's as you said their guest starring roles and you know, but they seem so fun. You were This is us. 68 whiskey, you know, the Yeah, I think the last thing I saw was NCIS LA or Los Angeles. I saw you did like a theme during COVID. How is production been? Have you been able to do anything? That's Kevin Covais 23:57 You know what? That's a great question. My last two roles, which as you previously mentioned it NCIS Los Angeles I got to do a again small role but part but a scene with with great actors and Chris O'Donnell and LL Cool J the leads of the show. And that was just so trippy because you know, you grew up watching lol and then you get to do a scene with them. I like that. It's like I've done this for over 10 years and you still get in those situations and you play it cool, but it's like I'm working with frickin Oh, cool. J This is not. But that was interesting. I'll tell you as it pertains to COVID they were coming off a hiatus to show and this was I believe this was their first episode of production back since COVID. I don't think I'm making that up. We go and we film at the Paramount lot you know the famous Paramount live in Los Angeles and and they took so many precautions. It's unbelievable. When you have a small you know, co star role such as myself, they give you a tiny little trailer whatnot. And everything's placed outside the trailer, your wardrobe, your sides like there. Nobody's coming into your trailer. It was a whole new world. Obviously you're wearing a mask the entirety of the time. You're filming just a little funny story, my character is wearing like some sort of alligator costume. He's like a sign spinner on the corner of the street or whatever, who they take in for interrogation at the NCIS headquarters in LA. And so they take me in and I'm still wearing this thing. And for the purpose of the scene, I have the first line and I'm wearing a mask during rehearsal we get in and obviously, you're not shaking hands with anyone, you're just meeting you're there for a day. It's a quick day, and I'm wearing a mask in this like weird out, you know, this weird, like lizard costume or whatnot. And then when they they start rolling, they're like, Okay, everybody take your masks off. Kevin, you can take the mask off. I'm like, okay, so I, I don't know what's going on. I'm just following their lead. I take the mask off. And I'm like, Where do I put this thing? I don't pocket somewhere in a lizard costume. I just like kind of stick it under my button, keep going with the scene. And then they call action and I run a scene with a local j was nuts. It was crazy. I was like, but it's a whole new world, you know. So they take the precautions, but then they call to action and you're back in a fictitious world that apparently doesn't have COVID-19 in it. And it was just bizarre. I was fortunate I had a small role A few weeks later on a show that is yet to be released a show with Elizabeth Shue called on the verge which I believe is upcoming on Netflix. And I didn't get to shoot a scene with her unfortunately, because she's amazing. But I had a really fun scene as a whole as like a funny, wholefoods worker, and I got to shoot on on that set. And again, they're taking all the precautions, you know, no contact and you're getting COVID tested every other day, because they need assurances that everyone on that sets safe. Everyone on that said this was pre vaccination. This was at the end of last year when I worked at magic, so nobody been vaccinated. Yep, you have to have assurances that nobody is has tested positive for covid. Otherwise, you got to shut the whole thing down. It was wild. But you know, it's a whole new world out there. And we got to be we got to be safe. And we got to be cautious, especially those of us with pre existing conditions, like type one. Yeah. Stacey Simms 26:47 All right. So we're gonna list in the show notes. We're gonna put your IMDb so people can figure out that they've already seen you a bunch of times. Yeah. You know, like, my husband. And this is? Well, it's not really embarrassing, but my husband is a big Transformers fan. Like all the Transformers movie. So I know you've been in those. So now I got to go back and like freeze frame and find you. Kevin Covais 27:07 Yeah, I just did one of the transformers. I had a funny, memorable scene with I think memorable with Mark Wahlberg and he would have been the fourth one. So it was I can't even keep track of it. He would know. I don't know. It was called Transformers Age of Extinction. Oh, yeah. The Stacey Simms 27:22 one with the dinosaur. Yeah, there's Kevin Covais 27:24 been five total, I believe. Yes, there's dinosaurs. Because Why not? Because anything goes in the transformers. You notice out? Yeah. And I think Shiloh buff did the first three. And then Mark Wahlberg took over as the lead for the next couple. And I was in the fourth one. And yeah, that was nuts. I had, it was that was such a surreal experience to Stacey Simms 27:42 get working on a big, big, big budget. That was the hugest gi crazy. I mean, it must have been wild. Kevin Covais 27:48 That was the hugest thing getting to shoot a scene with Mark Wahlberg and being directed by the very, very animated Michael Bay who was was cool to me, but it was just like it was I felt like pinch. I was like, how am I here right now? How did I get here? Like working on this with like, huge names like This is nuts. Yeah, heck of a time. It was a lot of fun. That's awesome. Stacey Simms 28:07 Well, I first met you ever saw you it friends for life? Yeah. You were a special guest one year. I don't think we met the first year that I saw you speak. And then you know, you've you've basically Kevin, they kind of they really adopted you. You were on staff. They did. Tell me a little bit about how you found the folks at friends for life, which I'm sure as you're listening, you're familiar with. They talk about it all the time. But the largest family diabetes conference in probably in the world at this point. Kevin Covais 28:33 Amazing. And the amazing work that they do over children with diabetes. Yeah, I was like you said I was kind of a stray dog who they like led into the house. They're like, Alright, well, let's domesticate this guy. And maybe he can become a part of this. I'm so blessed. One of my, you know, dearest friends, is Tom Kalia from the Diabetes Research Institute diabetes dad, as he's known. And Tom is one of the sweetest most generous guys I ever met. And I did American Idol, not to take it back to Idol . But I did idol and he reached out to my father because I was still a kid at the time. And he was a fellow long Islander and said, You know, I take part in this conference, and they do amazing work. And I would love to bring Kevin down. I had the summer free. I didn't make the American Idol tour. So I had this summer for and, and he asked to if I would come down to perform at the banquet for the 2006 friends for life conference in Orlando, Florida. And I was very excited. But I didn't know what I was getting into. I didn't know what this conference was. I didn't know that such an amazing organization existed. So I go down and I sing You Raise Me Up which was the Joshua again to bring up Josh Groban. The song that I sang on idol audition with and I sing it and it was just amazing. I had such an incredible time. And I learned more about this, what this conference was and learn of the support system that people had. And I think I was just so naive. I didn't realize that something like this even existed. And it just opened up my eyes. It opened up my eyes to how many people care about people in this world that I knew, you know, to an extent you know, around home in New York, you know, when I met these People when I met Jeff Hitchcock, when I met Laura, and all these amazing Lord bility, and all these amazing people at the conference, I was instantly just felt like family, I would go back several years thereafter, I think, in 2009, and then again, maybe around 2012 2013 as a special guest. And I kept going back as a special guest. And it was fun, because initially, I was there as kind of a guest who was promoting Idol and then, and then a younger generation of the kids that would go, I'd get to be a special guest and talk about good luck, Charlie on the Disney Channel. And that was a great fun, but then I would go and I would take part in in the conference a little bit. And then I would just kind of find myself walking around and saying hi to people and popping into the, you know, the exhibition room and popping into sports Central and playing basketball, the kids and I was like, I want to do more here, I want to do more. I got in touch with Laura. And they ended up asking me the next year like we've had just a special guest, would you want to come back and be a staff member here? And I was like, absolutely. Like I just wanted to, I wanted a bigger role. And they were so gracious as to offer me one. And now I'm just like part of the gang, which is always more fun for me anyway, because I never feel important. I never feel special. Like it's just like, I'm just one of the gang. I'm just like you. I'm just like this kid who has it. I'm just like this, you know, it's unbelievable getting to go there. Every year, they asked me to be on the team staff. And I think this past summer, yeah, was my fourth, fourth year on the team staff and I just want to go back every year, every year, they'll have me I want to go back out. Stacey Simms 31:15 It is amazing when you don't have that community connection, and then you find it, we were kind of by ourselves. I live near Charlotte, but I don't live in Charlotte. And it seems like everybody I knew with type one with kids with type one lived further away from me. And then in 2010, children with diabetes brought a conference to Charlotte, amazing. They used to have these regional focus on technology conferences, and I went, and that was where I realized, oh my gosh, there's all these other people. There's this community, and it really inspired me to get more connected. And now I'm so lucky, we have people not, you know, you hate to have more people diagnosed, but we have four people in my area, we have, you know, more connections. So I hear you, but working with the teams, as you said, Yes, I think that's a pretty hard group. What do you do? How do you kind of get through them or talk to them? Kevin Covais 32:01 It can be it can be I love it. Personally, I think I'd be more nervous to work with the younger kids, just in terms of not just holding their attention or whatnot, I think back to being 16. And I think back to the time I did I don't it's such a vulnerable time in your life. I think that more than anything else is that teenagers might act out or whatnot. But it's just stemming from insecurities or feelings of vulnerability, but a vulnerability about certain things in their life. And it's like, you just kind of have to, you know, give them a pass for that and try to break through the best you can. I mean, that's what I do. I you know, I never grew up a camp counselor. I never did any of that. So when I go to this thing, I look to friends of mine who were in the team group. Now, some of my best friends now who are on the team staff with me that I've met at the conference throughout the years. And I watched them do and I'm like trying to take notes because some of them are really good. And I'm like, yeah, it's tough. But it's tough to break through sometimes I think, yeah. Stacey Simms 32:50 I'd be curious to as a parent of a team, I don't know, one parent of a kid with type one of a teenager with type one who says, Oh, my kid is perfect. Right? They're doing such a great job. I'm so happy with all of their marriage course. You know. And I, I'm wondering if there's any advice that you have as being somebody who is closer to being 16 than I am? Certainly, and who has worked with these kids, you know, what can we as parents do to support them? Kevin Covais 33:15 That's an incredible question. I think I was naive, going into all this to see not that I didn't have struggles, but to have a support system at home like I did, where I think my parents, they were always aware of what's going on in my life. But I think it's such a give and take where obviously, my father, my mother spend 24 hours a day worrying about me as a kid with my diabetes, but not letting it show all the time and giving your child the space to sort of operate and trusting them in a way take off the training wheels and trust them to make their own decisions. Obviously, if if they need you, you're there. But also give them space, but don't smother them. I guess I it's a tough road. You know, I'm not a parent. So I'm not one to really comment on it. I can only approach it from that former teen perspective with my parents was I think my parents always did an amazing job on idol as well. I saw stage parents on idol I saw, you know, parents who were like, oh, you're gonna sing this song you're gonna do that. My folks always said to me, you know, Kevin, we're here for you. We love you. If you need help with something, let us know. But this is your thing. Obviously, you can't maybe take such a lacks approach in a certain way with diabetes, but it's informing your child to the best of your abilities always being present, always being there, but also letting them breathe and make their own decisions. I think if you can find that balance, it's really important because you see kids who don't necessarily have that are unique kids and I was naive. I thought everyone was like me who had and I thought everyone was like, you know had their ups and their downs and but good days and bad. But sometimes it's a rough road. And I I'd open my eyes to that just like going to the conference and just like going around and meeting people who have it. It's Yeah, it's not easy though. That's for sure. Stacey Simms 34:47 Before I let you go, Kevin, your type 1 diabetes if I've got my math right, is about to turn 21. Oh, yeah. Kevin Covais 34:54 Yeah, it's about Yeah. I could go out and go to the bars. type one. Yeah, I won't. But Stacey Simms 35:02 I'm certainly not going to ask you to, you know, to sum everything up and tell us what you've learned or you know, anything like that. But I am curious, you know, you now as I said, you use a CGM, you use it, you still have injections, you use multiple daily injections, but it's different insulin. You know, things have come a long way you found the community to support you. Anything you would tell your 11 year old self, about my guts done, you know what you've been through, Kevin Covais 35:26 I'd say Congrats. I mean, it's been a wild ride. And like, I haven't done things perfectly, and nobody's perfect. I think you got to give yourself a break. I think I've spent a lot of times kind of hard on myself from like a career perspective, as a singer, as an actor. And especially with my type one, it's easy to be hard on yourself, it's easy to, I think we go through these like ups and downs with this with this thing that we live with every day of our lives. And I can recall, like low points of like a really bad low or, you know, episodes that we all sort of experienced with this thing from time to time. I recall, like the immediate thing you feel is ashamed, ashamed that you allowed it to get to that point, I think if I could tell my younger self something, it's like, don't be ashamed. This is a part of the ride. Some days are amazing, some day stink, it's just a fact. No one's gonna be perfect. 19 you know, 100% of the time, it's just not it's not possible. So I think I would tell my younger self, I would say congratulations on achieving some of the stuff you've done, but also like, where to go, just, you know, get getting through it. And getting through this grind, you know? Yeah, I do know that. You know what, you know. So well. Yeah. Yeah. Stacey Simms 36:28 I know it as a parent, which is different story. But that's fabulous. too. Kevin Covais 36:32 Huge way to know it. Yeah. Well, Kevin, thank you so much. But it just thank you for having me. Yeah. Oh, it's Stacey Simms 36:37 been wonderful to talk to you. I hope you'll come back. Keep us posted. Let us look for you. I will Yeah. And hopefully time will go fast. And we'll see you next summer friends for life. Kevin Covais 36:47 That'd be amazing. Thank you so much for having me on. I really appreciate it. You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 37:01 More information about Kevin and links to what he's doing now. And links to some performances from idol back at season five at Diabetes connections.com. Every episode from 2020 on has a transcription with it as well. I'm trying to go back and fill in the blanks on the previous episodes, but boy, there are a lot of them. So I'm doing the best I can. But you can always find the information that you need. Hopefully, for each episode, they're at Diabetes connections.com and pop in the Facebook group. If you have any particular questions for me, you can always reach me at Stacey at Diabetes connections.com and Diabetes Connections is brought to you by Dexcom. And I was watching only murders in the building the other night. Are you watching this show? It's on Hulu. So not everybody gets that. But it's such a fun and interesting comedy. It's not quite as funny and silly as I thought it was gonna be. And that's not a bad thing with Steve Martin and Martin Short and Selena Gomez. And the reason I started watching it no surprise is because they have a podcast and some of the podcasting stuff is very silly. But it's fine. I love it. It's not really too far fetched. Let's just put it that way. And it's just a good show. But I got way off the subject. We were watching this I was watching by myself actually, when I got a Dexcom alert, and Benny was upstairs. He was playing video games or doing whatever he's doing upstairs. And you know, I was just thinking about how we had blood sugar checks on a timer, we had a schedule. I'm sure a lot of you did this too. Before CGM. We would check doing the finger stick the same time every day at home and at school. And whenever extra we needed to. It's amazing to think about how much our diabetes management has changed with share and follow. I mean, it didn't stop the show to get up and check him. I knew what was going on, I could decide whether to text him or if I needed to go upstairs and help them out using the share and follow apps have helped us talk less about diabetes, which I never thought what happened with a teenager, and he loves that part to trust me. That's what's so great about the Dexcom system. I think for the caregiver, the spouse, the friend, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow, separate follow up required, learn more, go to Diabetes connections.com and click on the Dexcom logo. Quick look ahead and a bit of a change in the schedule. I was set to go like many of you to the children with diabetes conference happening in White Plains, New York, the weekend of October 9, but they have moved that to a virtual conference. And I totally understand you know, you've got lots of kids uncertain situation with delta. So that will be in November. Now it is a virtual event. I will put information in the show notes. You can find out more about that we did virtual with them. Gosh, really all of 2020 of course, and it's a lot of fun. I think they do a great job. And one of the cool things they figured out early at friends for life and children with diabetes. You know children's diabetes is the organization friends for life is the event. They figured out how to help people socialize outside of the speeches and the reports and the talking which are all great. The presentations, I think are very valuable. But for me, the socializing is a huge part of why I enjoy these things. conferences, and they have these little virtual hallways where parents can drop in kids can drop in teenagers, young adults, that kind of thing. So worth checking out just for that. I'm disappointed, obviously, that we're not in person. But I'm still going to New York because this conference is 15 minutes from where my sister lives. And I haven't seen her in ages. So I'm going to go see her and hang out. And hopefully, Melissa, if you're listening, and I'm sure you're not, we're going to all the places where we ate in high school that weekend, so be prepared. We're going to Maria's pizza, we're going to diner, we're gonna make a list. So we grew up not too far from where she lives now. So that should be a lot of fun Later in the month, I'm going to be in Scottsdale, Arizona for she podcasts, which is a terrific female podcasting conference, as you would imagine, I'm really excited about that. And look, we'll just have to wait and see how these things go. Because certainly, events are touching go at this point, diabetes events, people are much more cautious and rightfully so. So we'll wait and see. But hey, that doesn't mean that we can't hang out. We can socialize. My Local Group is doing stuff online. I'm happy to come and speak to your group, virtually. I've still got my book to clinic program. I am working on Book Two. I am so excited. So still a lot going on. But man, I know I can't wait to read. We're gonna get back to normal. I don't know. But I'd like to get back to something else. Something we're socialized more. We hug more with each other more. Hang in there. Oh, my goodness. Thank you to my editor John Bukenas from auto editing solutions. Thank you so much for listening. I've got in the news every Wednesday live on Facebook, and then we turn that into an audio podcast episode every Friday. So please come back and join me for that. I'm Stacey Simms. I'll see you in a couple of days until then be kind to yourself. Benny: Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

The term “Walmart Insulin” has always referred to cheap, older formulations. But now an agreement with Novo Nordisk means Walmart is selling own branded version of Novolog. It's the very same insulin, with a much lower cash price. What does this mean for us as customers and for insulin pricing overall? Stacey speaks to Michael Burke, Walmart's Director of Brand Pharmacy Merchandising. They talk about who can get Relion Novolog, how much it costs, what your endo needs to know and how insurers are reacting. www.getinsulin.org LA Times article Stacey mentions More info about Relion Insulin Dear Dr. Banting (we need your voice!) This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode transcription below  Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premix auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, the term Walmart insulin has always referred to cheap, older formulations until this summer, a new agreement with Novo Nordisk means Walmart is selling its own branded version of Novolog.   Michael Burke  0:38 real sense of pride for us at Walmart to hear the great feedback. Our pharmacists and pharmacy teams are very excited about the product and how they can help support patients.   Stacey Simms  0:50 That's Michael Burke, Director of brand pharmacy merchandising for Walmart. We'll talk about who couldn't get this, how much it costs. Why now and what's next. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed right before he turned two back in 2006. And my husband lives with type two diabetes. I don't have diabetes, but I spent my career in broadcasting and that is how you get the podcast earlier this summer. As many of you probably remember, Walmart announced its new agreement with Novo Nordisk it is selling the same insulin that they make under the Walmart brand. So it's called ReliOn Novolog. And it's sold at Walmart and at Sam's clubs. This is not the older $25 so called Walmart insulin that includes older versions such as regular and NPH, which can be used safely if you know what you're doing very rarely used in pumps, and very rarely prescribed as a matter of routine. They're not the standard of care for modern day diabetes. But people do certainly use what many of you refer to as Walmart insulin, they still do use regular and NPH. But the vast majority of people who probably listen to this podcast and are regularly seeing an endocrinologist and have been diagnosed, let's say within the last 30 years are probably using novolog, humalog, And the the newer, you know, faster acting insulins. So because Walmart is selling novolog, we might have to change what we mean when we say Walmart, insulin. And now that the dust has settled a bit, I thought it would be a good idea to find out how it's going and what it really means for people who use insulin. Unfortunately, I don't think it's changed the marketplace a lot. What it did prove, at least to me is that the retail price of insulin with or without insurance is as arbitrary, as most of us suspected. I mean, pardon my cynicism here. I do appreciate the folks from Walmart coming on to talk about this. And I appreciate that they're doing something I'm sure this new pricing will help some it is $73 though for a vial when the estimated cost of producing that vial is maybe four to $6. So it is still quite high. And that is the cash price. By the way with insurance as you'll hear it is likely a lot lower. So going in, please know and most of you already know this bottom line, ask your doctor, Ask your pharmacist, make sure you are getting the insulin that costs the least for you according to whatever plan you have. There are so many hoops to jump through to ensure this if you don't have great insurance, you may want to go to get insulin.org that's a clearinghouse put on by beyond type one. And all it really does is bring all the coupon programs together. So it's one place where you can find out what you can get get insulin.org I will link that up in the show notes. We used it because as you'll hear in the interview, and I've shared this before, our current insurance does not cover the insulin that my son uses and wants to keep using and we needed to use coupons for that it did help us if you're struggling if you can't find these resources post in the Diabetes Connections Facebook group, you're more than welcome. We have a lot of great people who can help you figure this out. But you know, do what you need to do. as frustrating as it may be. Don't ration your insulin if you if you can possibly help it. I know that sounds ridiculous to even say that. But look, one in four people in this country do ration their insulin. So maybe there's something that we can do to kind of help you. As I said, jump through those hoops. Alright, Michael Burke, Director of brand pharmacy merchandising in just a moment, but first Diabetes Connections is brought to you by Dario health and we first noticed Dario a couple of years ago at a conference, Benny thought being able to turn your smartphone into a meter was pretty amazing. And I'm excited to tell you that Dario offers even more now. The Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you With coaching when and how you need it and personalized reports based on your activity, find out more, go to my dario.com forward slash diabetes dash connections. Michael, thanks for joining me a lot of information to get through and I appreciate you coming on. Thank you so much for having me. Let's just start with kind of an explanation, if you wouldn't mind, take us through what Walmart is doing here, what's the new version of insulin that Walmart is selling,   Michael Burke  5:28 we have recently launched analog insulins we can get into here in a second, the difference there, but it's an extension of our current line of insulin. So the insulin that we've had at Walmart for some time now is the human insulin, or the novolin products, our extension and new launch now is an analogue insulin, which are the newest version of fast acting insulin, and can help better regulate someone's blood glucose levels, very excited that we were able to get into this. It's been a large topic in the industry for a while on why we were just at human insulin as a private brand offering, and what more we could do so very excited that we got into the analog insulin, as it is the insulin to be used for a type one diabetic, and preferred in most cases and type twos.   Stacey Simms  6:19 Can you share a little bit about what happened here? Because this isn't something that Walmart could just do, right? This is a version of Novolog. I mean, this is an agreement with Novo Nordisk, can you kind of take us through what the process?   Michael Burke  6:30 Yeah, so we have had a long standing relationship with novo, they are the manufacturer of our human insulin, the Novolin ReliOn products that we've had on the market. And so with the changes of recent in the industry and a real focus, I'd say from across the board, from legislation to patient advocacy to patients, manufacturers, to pharmacies, to prescribers. There's been a large focus over the last two years on what more can be done in the space and so it allowed us an opportunity to work with novo and expand what we already had on the market is a private brand offering and bring a new private brand and new ReliOn offering in the Nova log in Nova log mix, both in a flex 10 and vile and offer a lower cost option for patients who had struggled with affordability to this point.   Stacey Simms  7:24 This is a branded insulin so you get ReliOn a brand novolog only at Walmart, am I Is that right? Is that how it works?   Michael Burke  7:32 Yes. So like everything healthcare, it's got to be confusing, right. So novolog is the branded name. That is the FDA filed and and trademarked products from Novo Nordisk. What we have done is partnered with Novo Nordisk to launch a ReliOn novolog and to ReliOn novolog MCs, same product manufactured by Novo Nordisk manufactured here actually in the US and comes off the same production lines is the same insulin, the difference being that it is branded with Walmart's private brand of ReliOn which enables us to bring that in house to self distribute to our stores help support our customers. So it offers us the opportunity to cut out some of the middlemen lower the cost, but still the same great product manufactured by Novo Nordisk still the same as their branded Nova log and Nova log mixes, just with a private brand twist from Walmart.   Stacey Simms  8:33 So this was announced in late June, as I remember, how has it been? Is it out now are people able to purchase it? What what's the roll up in like   Michael Burke  8:42 it is. So we started with the novolog vials and the Nova logs mix in our ReliOn brand, or sorry, the Nova log vials and the Nova log flex pins in our private brand of ReliOn. And then this last month, we were able to launch the mix in ReliOn flex pins and vials. So the regular novolog has been out a little bit longer. We're seeing really good traction, cut wonderful feedback from from patients, prescribers, various members of the industry, and has been really good reaction to this point, have a real sense of pride for us at Walmart to hear the great feedback. Our pharmacists and pharmacy teams are very excited about the product and how they can help support patients. We've heard lots of testimonials on where we've been able to save patients money and where patients were able to come to us and afford their insulin and not make different choices. And so it's for us been it's been wonderful since launch. Now. We're gonna keep that momentum going and make sure that we're reaching as many patients as we can and providing as much value and access as we possibly can in the insulin space.   Stacey Simms  9:50 It's some interesting questions for my listeners, if I could bring them to you. And the first one was, is there a limit to the amount that you can purchase per person per A month,   Michael Burke  10:00 there is not so these products, the newest launch the lion novolog and ReliOn Nova log MCs are prescription required. So as long as there's a valid prescription, there is no minimum or maximum that a patient can get dispensed at a time, a little bit different than our human insulin, which did have some limits on how much you could purchase at a time without a prescription, just due to some varying risks in an inability to keep in stock.   Stacey Simms  10:29 You've mentioned the mix a couple times what is the mix   Michael Burke  10:32 of it's a 7030 mix of analog insulin. So it's a fast and intermediate acting. And so for some patients, it is a better way to manage some of their peaks and valleys is to use an analog mixed insulin rather than just a single type of analog insulin and fast acting.   Stacey Simms  10:52 Is there is that again, pardon my ignorance is there isn't there a 7030 human insulin This is different or this is   Michael Burke  10:57 there is Yes, okay, insulin is a bit of a rabbit hole in the various types of insulin There are also mixes within them. So there are also long acting insulins. And there's some mixes in long acting or the parental insulin, their seeming insulin, which were the original insulins on the market that have mixes as well, and the analog insulin had mixes. And it's really just helped provide variety for patients and prescribers, that may not be seeing the right results with a single insulin, sometimes mix. Depending on what type of mix it is, is more beneficial and in lowering blood glucose, maintain the proper levels. Sometimes it's helpful in some patients without peaks and valleys. And I struggle with that   Stacey Simms  11:41 I just didn't realize it's my ignorance, I didn't realize that there was a 7030 analog. Alright, another question from the group. And another question, are they going to encourage providers to prescribe? Or is this solely an option for people with high deductible plans slash no insurance.   Michael Burke  11:57 So wherever there was a prescription, we will process whatever type of insurance where our goal is to have the lowest cost for a patient we possibly can. So may that be on our private brand insulin Navy on a brand or a different branded insulin? Every time a prescription comes to the pharmacy, we we do our best to make sure that we're going to give the lowest price. So our branded insulin continue to have some coverage today, our private brand does as well. So best opportunities is for patients to work with our pharmacy teams and make sure that they're getting the right Insulet at the lowest cost possible for them.   Stacey Simms  12:30 So I'm going to ask you a question you may not be able to answer and that's fine. But for clarification, so my son, our insurance currently covers novolog and doesn't like he doesn't prefer it. So if I were to get a prescription and go to Walmart, would my doctor have to write it for novolog? Would they have to write it for ReliOn novolog? Would I have to know could I possibly be saving more money if my doctor knew about ReliOn or does the pharmacist look at this at Walmart and say oh you want Nova log but it's gonna cost less if you use the ReliOn version   right back to Michael answering my question but first Diabetes Connections is brought to you by g Vogue hypo pen and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're gonna pass out there are lots of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar Jeeva hypo pen, it's the first auto injector to treat very low blood sugar tchibo kaipa pen is pre mixed and ready to go with no visible needle before Jeeva people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand, find out more go to Diabetes connections.com and click on the G book logo chivo shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash risk. Now back to Michael Burke answering my question about how much the pharmacist can do for you if you bring a regular old Nova log prescription to Walmart.   Michael Burke  14:10 Yes, for a no blog prescription or ReliOn Nova log private brand is interchangeable by the pharmacy or by the pharmacist. So a patient who has a current Nova log prescription or pharmacist can check to see if our private brands through insurance or other means would be a lower cost for that patient and can do that interchange themselves for those products so just know belong to our private brand over log. If a patient has a prescription for a another type of analog insulin that is not interchangeable with our private brand insulin. The pharmacist can verify insurance coverage for the patient and work with the prescriber on if it's appropriate to switch to private branded Nova log or to remain on the inside there. On today, so we can interchange with the novolog branded products themselves. But for other products, there would be a conversation between the pharmacist patients and prescriber to make sure they're getting the right insulin at the best cost for them.   Stacey Simms  15:15 Mike, you're going to have to forgive me as we move forward, we're going to start moving into more of a cynical part of the questions here, because as you've already alluded to problems is the rabbit hole. And we know I mentioned Nova log and human log, I mentioned that our insurance doesn't like human log to the point where and I've shared this story in the show, my son has done really well with it for many years. So when we changed insurance, I did not want to change insulins. So we took a it took a long time and some fighting, but I was able to use the coupons for human log, and we get human log for about $35 a month for all of the insulin that my son needs, which would be less, I believe, then if I were to use my insurance coverage, and get novolog or ReliOn at Walmart, I still feel like even though this will save some people some money, it just kind of feels like we're moving pieces around on the board. I guess my question would be for Walmart is how did you arrive at this price? Did you have to do you know? Did you have to set it a certain way to get the deal with novolog? This is gonna sound terrible. Do you throw darts at a board? I mean, who does for some people, it's going to be more expensive than what they're paying now. And I get some people will save money. But how did you come up with the price.   Michael Burke  16:29 So for us, we are one piece of the equation. As we've mentioned, healthcare is very complicated, especially the financial flows of healthcare. And so Walmart is one part of the financial equation as the dispensing pharmacy. We also have a distribution network and other assets that we utilize within Walmart. And so what we have done is taken all of our assets, tried to remove as many of the middlemen as possible. And put all of that back into the customer savings, customer pocket. We can't control all the levers there are in healthcare, but where we can we put it right back into the customers price, we truly mean it and Walmart and especially Walmart, health and wellness of the lives better and save money, right? Save money live betters Walmart from from the core, that's the only way that we could do so was was to take where we could remove some of the excess costs, and put it into that cash price, very complicated on the back end of who's making what decisions on formulary, and additional savings and eligibility for manufacturer discounts and coupons and on down the line. We can't control all of those. But what we can do is continue to take whatever we can out of that cost that inflation cost in the insulin and put it right back in to the cash price. And in that effort, hope to continue to drive down the overall cost of insulin to the marketplace.   Stacey Simms  18:06 Can you share? Is this an exclusive contract with Walmart? This was another question from one of my listeners, do you In other words, could other providers like Express Scripts? Or even Amazon You know, one of these folks that's getting into the pharmaceutical, you know, medication supply side? Could this be a first step toward other people doing something similar or is this exclusive,   Michael Burke  18:27 so the ReliOn private brand and exclusive for Walmart, that is our our trademark brand at Walmart for insulin and diabetic supplies products. So others couldn't utilize our ReliOn but we hope that this is part of other stepping up and and also looking to see how they can impact the space, how they can drive down costs. For us, it would be a great win if there was competition in the space. And we started to see insulin prices across the board come down because the competitive market only benefits the patients. And that's what we're looking to do. So we'd be happy if others were able to get in the game and figure out different ways to drive down costs for customers. Because at the end of the day, if there's an affordability issue, we won't be able to curb the growth of diabetes.   Stacey Simms  19:17 I'm curious, again, this this might be a ridiculous question. But with your answer in mind, do you have an agreement with novo in terms of how low you could get that cost? Because I mean, let's be honest, if you knock the cost down, it's set. What is it? 7288 per glass vial or 8588 for five flex pens, if you could knock that down to $35. I mean, you basically corner the market, no coupons or anything like that. Was that even discussed?   Michael Burke  19:44 Our focus is always on? How can we drive the lowest cost lowest price possible? We'll continue to focus on that. Like I said, there's only so many of the financial levers in healthcare that we own at Walmart and so we will continue to do our part To to take out everything we can from our end to make sure we're driving down prices and costs. But we only own so many of the levers. So we continue to look to novo and other partners to help us continue to drive those prices down   Stacey Simms  20:15 with the pricing that I just mentioned a moment ago. Are any coupons accepted for that? If people have novolog coupons? Are they good for ReliOn novolog? Or is that something completely separate?   Michael Burke  20:26 Yeah, that's completely separate. That's for qualified programs for their branded product. We don't have those Today, on our private brand product, what we continue to look at is, is how do we take the cost of those programs and put it right back into our pricing, because every day transparent, low prices, what we're looking for, as you mentioned earlier, the different insurance coverage, and copay assistance and discount cards and manufacturer discounts on down the line just makes healthcare so complicated for the average patient. And so our goal is to not continue to build those additional steps and needs and trapdoors and not put that pressure on our patients to need to go out and hunt and find those. But rather continue to put that right back into our cash price and make sure that we're offering as low as we can price on these insulins, in a transparent way, that that will continue to be our focus, just making this more complicated isn't going to help patients with affordability, access, continue to simplify a very complicated healthcare arena, especially insulin is to the benefit of all of our partners.   Stacey Simms  21:44 Just to be clear, the end, the prices that I mentioned, is that someone who doesn't have insurance, that's just a cash price.   Michael Burke  21:51 Yes, that is that is our cash price. And that is the starting price. So if a patient has insurance, or different type of coverage, that we will process and see their eligibility and what their coverage will do, and where that will bring down the price. We're seeing pretty good coverage so far since launch across the board. But you know that that continues to change. And as you said, there are different formularies and different pricing tiers out there. So that what we say is the highest you're going to pay for that box and vile and those prices, but we'll try to do everything we can to run insurance and check for every possible way to save money from those prices.   Stacey Simms  22:32 Here's another question from my listeners, are there any plans to offer the in pen cartridges, which is a different product, then no, then flex pens,   Michael Burke  22:41 we don't have that today, we continue to look in the space for for whatever we can can continue to offer and do but today, we do not have that as a as a product offering   Stacey Simms  22:51 any plans to do this with other insulins, you know, long acting or different brands or humalog or Tresiba.  You know any other types of insulins that are out there,   Michael Burke  23:01 we continue to look for opportunities, kind of across the board, from our generic team to our specialty team to the branded team that I'm on, to figure out what are the best ways to save our customers money and make sure that they can be adherent to their medications. So I can say that we'll continue to look at opportunities. Diabetes is obviously a growing issue in the United States. It continues to create barriers for our customers, our patients, our families. So we'll continue to invest time and effort in the space and make sure we're doing everything we can to do our part to help increase access, decreased costs and support our patients in their journey and diabetes.   Stacey Simms  23:42 I appreciate you taking on my questions. I mean, I know you hear the frustration in my voice and my listeners comments and questions, because it just seems and I can't say this is Walmart's responsibility. But it just seems like we've been told for years and years that you know, the price is because of research and, you know, development and and then to just suddenly say, Well, you know what, we don't need to sell it for $300. We can sell it for 7288. It kind of seems absurd from where we all sit. And I know it's complicated. And I guess there's no question here, Mike, but I could just say to you, please, as you move forward, I know everybody needs to make money. I know that's how the system is. But if Walmart really wants to, you know, improve lives, improve access, please keep pushing to lower the prices, because it does make a difference. One in four Americans is rationing insulin right now. And while this helps, it also points out how frankly broken the insulin pricing system is. So I appreciate you doing what you're doing. And I appreciate you taking these questions on. And really just thanks for listening to me talk about that as well.   Michael Burke  24:44 Yeah, I appreciate your time. I appreciate you having me on. Like you said, we're here as Walmart to continue to do our part. We're invested in making our communities healthier, both from a customer standpoint and employee standpoint, community standpoint. So thanks for having me. I'm glad to talk to you I understand the frustration. I've lived in this world for a long time. So I've lived in the frustration, I feel it. I'm a pharmacist myself. And this has been a very complicated space that, quite frankly, we'd love to add some light to and make easier, make more affordable and continue to drive better outcomes for patients.   Stacey Simms  25:22 Mike, thank you so much.   Michael Burke  25:23 Appreciate you having me on and tell you we'll continue to do our part.   Announcer  25:33 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  25:38 More information at Diabetes connections.com. Of course, there's a transcript along with each episode now. And I will link up more information about the Walmart program. I'm also going to link up a column I thought was fantastic. From the la times by David Lazarus. He wrote all about this earlier in the summer, when it first came out, he lives with type one, he gets it. And it's an interesting look at the marketplace and what he thinks with Walmart entering what he thinks it shows about the price of insulin. He's a great writer, I'd love to have on the show sometime. But I'll link that up. Alright. Diabetes Connections is brought to you by Dexcom. And you know, it is hard to remember what things were like before we started using Dexcom. I mean, I really haven't forgotten, but I guess what I mean, it is so different. Now, when Benny was a toddler, we were doing something like 10 finger sticks a day. Even when he got older, we still did at least six to eight every day more when he wasn't feeling well or something was off. But with each iteration of Dexcom. We've done fewer and fewer sticks. The latest generation the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about these little worn out fingertips makes me so glad that Dexcom has helped us come so far. It's an incredible tool, and Benny's fingertips are healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. learn more, go to Diabetes connections.com and click on the Dexcom logo. Before I let you go, a couple of housekeeping things please send me your dear Dr. Banting audio if you have not heard me talk about this, I am collecting from you what you would say to Dr. Frederick Banting, the man credited with the discovery of insulin. Of course, there were many people helping him. But the Banting House Museum has an exhibit of print, dear Dr. Banting letters, I thought it'd be really fun to do an audio version. So let me know. I'm gonna link it up in the show notes. There's a whole blog post on Diabetes connections.com, about how to do it's very easy, just use your phone, but you got to get those three by the end of September. And looking ahead, I'm doing a little bit of where are we going because we're starting to go places again, a little bit here. And there. I've got some virtual and some in person stuff coming up Delta permitting. So the virtual stuff I'm really excited next Tuesday. So if you're listening as this goes live, it was Tuesday, the 21st my JDRF local, but I think this is open to everybody nationally, and I'll put this in the Facebook group JDRF is starting something for older people with type one and I say older very judiciously because I believe I'm in this group with not with the diabetes, but in the older. You know, basically there's a lot of issues that people are facing as they hit, you know, middle age and older age. And it's not just Medicare. I mean, you know, but there's a lot of questions people with type one may have. And interestingly, I do a lot of research for this show my listenership very dedicated older folks. Again, I'm in this category now as I'm turning 50 in the month of October, but we're interested in issues pertaining to type one in their health as they get older. So I'm doing all of this to say next Tuesday, the 21st jdrf has a an online event that you can join in, I'm going to be doing a little bit of my in the news for this group. But it's going to be news that I have curated that is all to an older crowd. And I'm probably going to do it for 6065. And up I think that the the insurance, you know, cut off there makes perfect sense to try to find things that work for that group. But there is a Facebook group, I believe that they started as well. So more info on that. And then later in October, we've got the shep podcasts conference out in Scottsdale, Arizona. That's the other group that I take part in quite a bit. I'm helping them out. It's women podcasters. Obviously, big group really excited to hang out with them. And we'll see in terms of you know how many in person events happen in the weeks and months to come? Hopefully they start picking up again, but lots of virtual stuff going on as well. So if you want me to come speak to your group online or in person, please let me know. I'm always excited to do that. And we gear it to you know, whoever I'm talking to parents or adults with type one, whatever you need. Thank you, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. We've got in the news live on Facebook every Wednesday at 4:30pm. Eastern and then that becomes the in the news episode. You can listen to right here every Friday. So we'll see you back here soon. Until then. Be kind to yourself.   Benny  29:59 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

A high school swimmer with diabetes is told he can't compete at the state championships because of his CGM's medical tape. It's a story that's been all over social media and national news outlets. What really happened here? We talk to Ethan Orr and his mother, Amanda Terrell-Orr. They explain  what happened that day, what they'd like to see change and what we can all do to protect our rights when it comes to diabetes. Also this week! Send us your "Dear Dr. Banting" audio! Details here  This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode transcription below: Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system. This is Diabetes Connections with Stacey Simms. This week, you've likely seen the story of a high school swimmer with diabetes told he can't compete at the state championships because of the CGM, his medical team what really happened here, we talked to Ethan Orr and his mother.   Amanda Terrell-Orr  0:41 The whole point of the rule is to prevent a swimmer from having a competitive advantage. You would not have to be someone who understood type 1 diabetes to look at what even had on his arm and know that of course that would not cause the competitive advantage. Of course, it was just medical tape covering up a medical device.   Stacey Simms  1:00 Amanda Terrell Orr and 16 year old Ethan join me to explain in their own words, what happened that day, what they'd like to see change and what we can all do to protect our rights when it comes to diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. Always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son, Benny was diagnosed with type one right before he turned two. That was almost 15 years ago. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast. Before we jump in. I need your help. I am trying something for November. I want to hear your dear Dr. Banting stories and letters. I posted this on social media. If you're in the Facebook group Diabetes Connections of the group or you get my emails, you will be seeing this this week and for the next couple of weeks. Because all the month of September. I'm asking you to record some audio. It's very simple. Just do it on your phone. As part of the dear Dr. Banting exhibit. We talked to the folks at Banting house the museum where Dr. Frederick Banting had his eureka moment where he came up with the idea that led to the discovery of insulin with other people. But Banting house has an exhibit called dear Dr. Banting. And I go much more in depth on this. It's a Diabetes connections.com. It's on my social media. I'm asking you, what would you say if you could thank Dr. Banting for yourself for your child? Right, just thank him. So all the specifics are in the show notes. Basically just try to keep it to a minute. I'd like to play these back during the month of November. I'm really looking forward to what you have to say. Don't worry about making it perfect. Just try not to have too much background noise use your phone's voice memo app doesn't have to be anything fancy and send it to me Stacy at Diabetes connections.com I cannot wait to hear what you have to say. Alright if you haven't heard and boy this was all over social media last week and this week. Here's a quick synopsis of what has been reported. Amanda and Ethan will go much more in depth and and frankly set a few things straight that were reported a little bit inaccurately even has type 1 diabetes. He was diagnosed at age 10. He wears a Dexcom G6  he uses simpatch the brand of the tape is not important, but you should know that he wears the medical tape over the Dexcom as many people do, and that's pretty much what does that issue here. He also wears a Tandem t slim x two pump that he removes most of the time when he swims. Ethan swam all season for his high school in Colorado Springs. No issue he had the CGM on for every meet. But at the state championship, as you'll hear, it became an issue. And I'll let me tell that story. But you should know going in is that this is not a lawsuit. The family is not suing for damages or anything like that they filed a complaint with the United States Department of Justice, Civil Rights Division. This is not about money. And you may have also heard that the CHS at the Colorado high school activities Association, which is receiving the complaint here. They say that Ethan did not have a signed medical authorization to have something like this. Well, he has a signed 504 plan. So does that overrule? Or could that be looked at is in place of what they're talking about in terms of medical authorization to wear tape in the pool because it applies to his diabetes and his diabetes medical management plan, USA swim, that governing body does allow medical tape. So there's a lot going on here and I think it's more in depth. And then you've seen in certainly a lot of these media reports, as well done as they are, you know, these people don't speak diabetes, they don't cover diabetes on a regular basis. So it's really excited that Amanda and Ethan agreed to come on and share their story where we could really kind of drill down and figure out what happened here and more importantly to me learn what we can all do to prepare our kids for sports and to kind of learn what we can all do to stand up for ourselves when it comes to diabetes. Right. Okay, so quick housekeeping note, I'm nosy I like to talk to people so we set the table for a while here I talk about his diagnosis story how he adjusted to swimming you know all that kind of stuff. So if you're just here for the lawsuit stuff, we don't talk about the actual swim meet until about 12 minutes into the interview. So you could go ahead and skip ahead I'm not offended but just know that there's some getting to know you stuff that happens before we talk about the nitty gritty Alright, Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's what most of us carry fast acting sugar and in the case of very low blood sugar, why do we carry emergency glucagon there's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke Logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. Amanda and Ethan, thank you so much. We did this on short notice I really appreciate you coming on and sharing your story.   Amanda Terrell-Orr  6:27 You're welcome. Thank you for having us. Thank you.   Stacey Simms  6:31 And Ethan, you got up pretty early to do this. I am East Coast, your West Coast. So I appreciate that very much.   Ethan Orrr  6:35 It's all good.   Stacey Simms  6:39 Let's back up a little bit before we jump into what happened here and the lawsuit and everything. Amanda, let me start with you. Tell me your diagnosis story.   Amanda Terrell-Orr  6:48 Sure. So Ethan was 10 when he was diagnosed, and our diagnosis story, I think is fairly typical of other people we had noticed, Ethan's teachers had noticed that we had noticed that he was going to the bathroom way more than usual. So I took him to his pediatrician and expressed some concern about that didn't really know what might be happening. They did a test of his urine. And it didn't show any kinds of problems with sugar or ketones or anything like that. So we just sort of stopped at that point. And then you know, weeks go by, and this is still happening. We went on a small vacation and even drank all the bottled water that we had, and was still going to the bathroom all the time. And then the day before Easter that year even had been kind of wrestling with a friend. And he started to be short of breath. And he also felt like really like something was wrong. So the morning of Easter, we wake up and I look in his mouth, and I see white spots in his mouth. And I say to him, it's time we need to go to urgent care. So in the back of my mind this whole time has been some education that I saw on a friend's Facebook post about type 1 diabetes, her son has type one. And she always posts educational information. And so in the back of my mind, I was thinking, I wonder if the test whatever they did at the pediatrician was wrong. So we go to urgent care, they test them for strep throat, of course. And then I mentioned to the doctor that I'm concerned because of these other symptoms. The doctor, of course, has someone test his blood sugar. And luckily for him, it wasn't extremely high. He wasn't NDK. But urgent care at that time, send us directly to the hospital. So Ethan really stayed a day in the hospital. And the next morning, we were able to connect with the Barbara Davis center part of Children's Hospital in Colorado. It's an excellent place for treatment of kids with type one. So we were able to go there and immediately start connecting with resources and other families and of course, like, like everyone after diagnosis, drinking from the firehose to try to figure out how are we going to live in this new life?   Stacey Simms  9:10 Even What do you remember that time?   Ethan Orrr  9:12 I remember during the day before with all the symptoms that I would wake up in the middle of the night like to use the restroom. I didn't know what diabetes was immediately in the car. So mom was tearing up a little bit on our way to the hospital. And she when I asked asked, like, what is diabetes? She's like, well, you're gonna be getting quite a few shots today. Because like home, right? No, I like I thought she was kidding. At first cuz I've never heard of some like that. The beginning is I was just in shock a little bit. But then like, I slowly edged in or wet or things will be good. Nothing's gonna change too much.   Stacey Simms  9:53 I don't want to fast forward too much as we're getting to, you know, the news story here, but you're 16 now, so Were those six years. Obviously you play sports, did things kind of go to a better place? Do you feel like you guys managed it pretty well?   Ethan Orrr  10:08 Right? When I got diabetes, I was still competing, swimming wise, and I was trying to swim for the Colorado torpedoes in Manitou. At the time I, I had my CGM, but it didn't work in the water was a different type of CGM. So my phone couldn't connect in I was in a spot where I was close to my honeymoon period. And so we had a we are way too many troubles, trying to like dangerous troubles trying to be able to swim that year. So I ended up just pulling out, you know, we made a family decision is too dangerous, because I could feel my blood, like when I went low or high or anything like that isn't that low? This year, at the beginning of the season, we are a little bit of a problem. Not a little, there's a big problem at the beginning of the season, because my body wasn't ready and adjusted for stuff like that. So I had a lot of very, very bad lows during some practice for like about a month. And then it finally picked up and I was completely fine after that. And I was able to swim very well with the rest of it without blood sugar issues.   Stacey Simms  11:16 Amanda, let me switch over to you. Tell me about that experience. Because I know with my son, every seat Well, first of all, he changes sports every couple of years, which is bananas, because we figure it out. And then he moves on. So what was swimming? Like? Yeah, you hear you,   Amanda Terrell-Orr  11:29 I hear you. Yes, we have that experience as well. It sounds like our kids are similar that way Ethan likes to jump around sports. So he had been even been competitive swimming for not an insignificant amount of time, I would say when he was diagnosed, and it was just in that honeymoon period and learning everything. And being just terrified of every significant low. You know, at the beginning, those things seem really insurmountable. Because even had a couple of really scary lows, it was also kind of affecting his confidence to stay in swimming. So sadly, something that he really loves. What we said is we put it on pause. We didn't think it would be on pause this long. But it was really Ethan's choice. And so we were really happy this season, when he chose swimming again. And then he started swimming, and everything that we thought we knew about management of his diabetes changed in some ways. And in Ethan's case, he was he's very active, he's very fit. But his body was not used to the kinds of energy that need to be expended to swim in particular. So we tried all the things, all the tricks, all the tips that everybody gave us. And he was still having really significant lows, having to be assisted out of the pool sometimes. But to his credit, and one of the things I'm so proud of him for is that he swam right through that he had to sit out of practice a lot because of low blood sugars. But he still kept going every day. And he believed us when we said your team is going to help you and by team I meant his endocrinology team, and also athletes with type 1 diabetes. So we threw out questions out there into the social media world and got great advice from other people, athletes with type one. And we combine that with the guidance from our endocrinologist and Ethan's body also adjusted to the swimming. And so at the end of all of that he was at the end of the season, he was really doing pretty well in terms of being able to swim safely. So we were very proud of how he came through this season. You know, to be honest, as a person without type 1 diabetes, and an adult. I don't think I would have done that. It was very, very hard, but he stuck it through and was fortunate enough to be able to go to the state championships.   Stacey Simms  14:01 He said I'm curious what worked. Looking back on all of that.   Right back to Ethan answering my question, but first Diabetes Connections is brought to you by Dario Health and bottom line you need a plan of action with diabetes. We've been very lucky Benny's endo has helped us with that and he understands the plan has to change. As Benny gets older, you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months. reduction of A1C was in three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario's diabetes success plan and make a difference in your diabetes management could have my dario.com forward slash diabetes dash connections for more proven results and for information about the plan. Now back to Ethan explaining how they got his blood sugar more stable during and after swimming.   Ethan Orrr  15:03 So to be honest, the only reason it worked, I in my body got adjusted. At the beginning of it, I would have to take seven juices, maybe practice a, like during the entire thing, not not like a one point. But like throughout of like a one hour practice is really bad. But something that we did is I had gummies like little energy energy jam. Yeah, it's like the glucose gels. Yeah, we had glucose gels next to it. Because if you have too many fluids, with swimming, you can get nauseous, especially with it being juicing and eating granola bars before you, when something very hard tends not to work out very well to something that's like flexible with your stomach. So it's not like you're eating like a valley granola bar, and then you're going into pool and wanting to puke.   Amanda Terrell-Orr  16:03 Yeah, even some of the things that you're maybe not remembering because they just became so routine for us is suspending his pump. like two hours before practice making sure he didn't have any insulin on board keyword also, toward the end there where we were waiting for his body to adjust, he would have the equivalent of a meal, about an hour before practice with no insulin to cover it. And he would still getting into the water, those first bit of time would still go very low in a short period of time. So then he would have to sit out like he was saying, you know, have a lot of juice. And then he would be nauseous and not able to swim as well. What the doctor kept telling us is, you know, hang in there, we're going to figure this out, your body's going to adjust. And sure enough that ended up happening. But those are the kinds of things that we had to try in the early part of the season.   Stacey Simms  16:57 Sounds very familiar. My son's first wrestling practice freshman year of high school, he ate 85 uncovered carbs and still would not go above 70. Yeah, I was able.   Amanda Terrell-Orr  17:09 Yeah, the other thing that was really challenging that we had never experienced before, but we know that other people have since we reached out is overnight. Well, after practice, Ethan would have lows that would last for hours, no matter how many carbs we would give him. So then we would have to get to the point where we were micro dosing glucagon with the advice of his doctor in his circumstance to try to bring his blood sugar back up. But there were nights where my husband and I were up for four hours at a time just trying to get his blood sugar into a safe range. And this year, is the first time in all of those years, he's had diabetes, that we had to ask for emergency medical assistance for a very severe low. So it was a really, really difficult time. But what we like to think about that, and you know, he's very resilient, he got through that time. And you know, the type one community was really helpful in helping us come up with ways that we could try to address these big problems that we're facing.   Stacey Simms  18:14 So you brought up the state championships. Let's just jump into that now and talk about what happened and the basis of the lawsuit. And you know, what you hope to accomplish here, but start by telling me and Amanda, let me ask you what happened at the state championships.   Amanda Terrell-Orr  18:29 So the summary version of that, that I would say is that even had several events that day, they were all relay events, which means that he was competing as part of a small team of other swimmers. He had swam to those events. And the last event of the day would have been his final relay event swim. He was standing at the side of the pool with another student next to a referee, and the referee asked Ethan about what was on his arm. And so Ethan explained, of course, that it was a continuous glucose monitor that it measured his blood sugar that it was for type 1 diabetes, and that he had the patch over it to keep it on during swimming, which every athlete knows that everybody's body's different, but you are more likely to need extra cover over your CGM when you're sweating or swimming or that kind of thing. So the referee asked Ethan, who his coach was and who he swam for, and minutes before the event was scheduled to begin the referee address the coach. The coach told the referee all the same information that Ethan told him And in addition, said Ethan has an active 504 plan that allows him to have his medical equipment. The referee insisted that Ethan was in violation of what is commonly called the tape rule, which is essentially the fact that a swimmer can't wear something extra on their body to aid their speed boy The four body compression because those things could give the swimmer a competitive advantage. The coach tries to explain again everything that was going on. And that not one time in the 70s even swam prior to the state championship. Did any other referee believe that that rule applies even. It's always obvious in some of the videos that various news stations have used. You can see it on Ethan's are messy swimming. So clearly referees who are paying close attention to the swimmer to see whether their stroke is off or they're, you know, doing anything else that would be a violation saw this on his arm and no one said anything. So the referee was told that information as well. The referee insisted that in order to compete under that tape rule, he would have needed a doctor's note to say that it was medically necessary. The whole point of the rule is to prevent a swimmer from having a competitive advantage, you would not have to be someone who understood type 1 diabetes to look at what even had on his arm. And know that of course, it would not cause a competitive advantage. Of course, it was just medical tape covering up a medical device, the Dexcom G6  says on it what it is. And I timed it, it takes about 15 seconds on Google to figure out what that is. So if the referee did not believe the information he was getting, and the whole purpose of the doctor's note is to say, you know if needed, and so it doesn't give a competitive advantage. All of that together means that the referee heard all that information. And he either didn't believe it. Or he continued to believe that either was potentially cheating by wearing a foreign device or substance to aid his speed buoyancy or body compression. So at that time, the referee said that Ethan was not going to be allowed to swim. One of the important things that has happened in the news that I know the governing body is having trouble with is the use of the term disqualification. In my mind when the kid doesn't get to swim, the semantics of that don't matter. But it wasn't the fact that even swam in the meets in that final event and was disqualified, he was not allowed to swim the final or that. And so what the coach tells us happens from that point is that the referee says Ethan will not be able to swim, you were required to have this note, he's in violation of the tape roll. And so the referees scramble, because again, he's addressed minutes before the event starts and substitute another swimmer for Ethan. But what the coach told us is that in the rules, when you're going to substitute a swimmer, you have to go to, you know, like the administrative table and make that substitution in a particular kind of way. And so he was not able to do that in that time period. And the coach indicated to us that the relay team was subsequently disqualified for not having a proper substitution. Now, we learned for the first time when chafta issued their statement, that they are saying that the team was disqualified for an early start. And, you know, from our perspective, although it's really upsetting to us that the whole team would have been potentially disqualified on this substitution issue. The fact is, the crux of this is that Ethan was not allowed to swim, because someone incorrectly interpreted what he had on his body is potentially cheating and violation of the taping raw. That is essentially what happened in Ethan's case. And that just started all of the research and that kind of thing that our family did before we decided to engage a lawyer got it.   Stacey Simms  23:50 My question, I had a lot of questions. But one of my questions is, is it your belief, and I assume it is, since you're going to have with the lawsuit, that having a 504 plan, being covered by the American with Disabilities Act supersedes that tape rule.   Amanda Terrell-Orr  24:05 There are several points to what we're saying. So the first thing we're saying is the rule doesn't apply to even circumstance. And although the high school associations have not chosen to be this clear, the USA Swimming rules are very clear that taping for medical devices is not a violation of this taping rule is really about kt tape or therapeutic tape that would be used to support somebody muscles or joints or ligaments or tendons in a way that would give them a competitive advantage. Anybody who knows anything about swimming knows that when something protrudes from your body like a CGM, that it actually causes the disadvantage because we're talking about milliseconds of time and surface drag can actually make him slower. Additionally, we know the rule didn't apply because no other referee instead Prior meet even mentioned it as being possibly implicated by that rule. So let's say he even mistakenly believes that the rule applies, there are a couple things about that he did have a 504. We do think that's important, because the 504 says that he's able to have his medical devices at all times, in all school activities. Secondly, and I believe this is standard across the country, but even had to have a sports physical before he participated in sports that said that he was safe to participate in those sports. So there are lots of reasons that we believe the rule didn't apply. Even if it did, Ethan should have been fine without a specific doctor's note to prove he had type 1 diabetes. And further, the referee under the rules had the discretion to allow even to swim if he did not find that to be excessive. And he says, and he chose not to let even swim. So for all of those reasons, I think the way I described it to someone is there was a tortured reading of that rule to exclude a kid was type 1 diabetes isn't   Stacey Simms  26:13 how is your team reacted to all of this?   Ethan Orrr  26:15 Whoa, I didn't find out until I was literally walking to the blocks. My team was a little bit upset, but because they didn't know what was going on. At first, my friend, I was with one of my teammates. While that was happening, and he's like, going on well, the coaches talk or not the coach, the referees talking to me. And so I was walking to start the event, like I was walking around the pool, and they were like, Ethan, why aren't you sorry? I was like, What? What do you mean? And they're like, you're not swimming coach just said, Go talk to coach right now. We're starting to bet right now. Aren't we? Just like, yeah, go talk to coach right now. And we're gonna talk to him. And he was like, yeah, we're looking. I'm looking at the rulebook right now. And we're all looking at the rulebook really quick, but you're not able to swim. Because the CGM on time. And so everyone was like, why? because they didn't know it was forward. And the teammates that I was with is like, was it that coach, or, or the rapper or whatever? I was like, yeah, know what? He was like, yeah. I don't know what to tell you. I was like, Oh, okay. We were all upset about it. I was really dumb. Did   Stacey Simms  27:26 they support you? I mean, in these days in the time that has passed, tell me about that.   Ethan Orrr  27:32 Oh, yeah, no, they've always, I'm friends with everyone on the swim team.   Amanda Terrell-Orr  27:35 They're all super great. My coaches super great. The trainer for the cornado, the school that I stand for, is really great. My teammates are really supportive whenever I would have to get out, you know, they just, they'd make jokes, they'd be funny about it, like try and like lighten it up and whatever. They're really great. They're a really great team, they are really great team, I'm still going to swim for them this year, I'm still competing for I'm going to try and compete for state this year to this. I think the other thing, even in terms of the support even got, we we really can't say enough about this coach and the athletic trainer, it was a difficult season for them to of course, because of everything Ethan went through. So this happened, the state championship happened at the end of June, at the very beginning of July, the coach actually sent an email to chafa and laid out the situation of what occurred, asked if they would work with him, because he believed that what happened could potentially be a violation of even federal right. And I spoke with the coach kind of throughout that time. But at the end of July, I spoke with him more in depth and and I really wanted to know what kind of response he had received, he had received zero response to that email. So here we have a coach that's trying to act, you know, advocate for his student with diabetes and try to get something change. So this wouldn't happen again. And he received no response to that,   Stacey Simms  29:04 you know, Amanda, a lot of people are going to be really excited that you've done this and want to see this change and are rooting for you. But a lot of people are also going to be wondering why a lawsuit. There's just so much that happens to you all. When you file a lawsuit, you're going to get a lot of negative attention, you're going to get pushback, we file the lawsuit and what are you seeking in the lawsuit?   Amanda Terrell-Orr  29:26 So I'm glad that you raised that. That's one of the points that is confusing to people. We actually have not filed a lawsuit we filed a complaint with the Department of Justice alleging a civil rights violation. So that process is a different kind of process. That's not about monetary gain for anyone. That process is about the Department of Justice investigating whether or not there was a violation of even civil rights and if so, what kind of oversight is necessary over the governing body so that athletes with this abilities don't experience those kind of violation. So it's essentially a mechanism to enforce oversight and change, but not a mechanism whereby we would receive any funds whatsoever. Our lawyer is doing this pro bono. If we were to file a lawsuit, that would be a different circumstance. But it isn't our goal. To get money out of this situation, our goal has several parts to it, the main part of it is both the national and the state rules need to get with the times and make the kind of changes that USA Swimming has made. That makes it clear that taping of a medical device is not cheating. That is the primary thing that we need to see. I also truly believe that chafa in their rulemaking process needs to include the voice of athletes with disabilities, or people who have a lot of familiarity with those areas, I think that would help give voice to some of these areas where they clearly have not educated themselves. And I just think that voice is so important. So those are a couple of the main things that we're trying to get accomplished here. And, you know, in general, the governing body had the opportunity to say, we really care about this, we want to work with these folks to try to make change. We had one referee interpreted this way. This isn't what we believe as a system. But their statement, you can see, it's clear that they believe that discriminatory reading of that rule is the right reading of the rule. So we need some help from Department of Justice or other avenues to force the issue to get them to change. What kind of tape do you use? Do   Stacey Simms  31:45 you mind? I mean, you can share a brand name or just you know, because there's so many different overlays for the Dexcom. I'm curious what it looks like   Amanda Terrell-Orr  31:50 he was wearing the simpatch. Got it. And one of the things that I've been saying to people, if they're not swimmers, or athletes, they don't necessarily understand the difference between my kcca for therapeutic tape and Matt. But as you know, and as other people who use those overlay patches, now, that patch was specifically exclusively and obviously designed for that purpose. It has a perfect cut out just for made for the exact model of CGM that you have. And it's clearly obviously just holding that device on. So anyone who looks at the simpatch, or any other similar kind of patch, can easily understand what it's there to do. And not that and understand that it's not there to aid his speed, buoyancy or body compression, it can't do any of those things. And it's clear that it can't when you look at it,   Stacey Simms  32:45 he said you've said you're gonna start swimming again, you want to make it to the states again, why is this got to be very disruptive to you? This can't be a fun thing to be going through. Tell me why you like swimming.   Ethan Orrr  32:56 It's one of the hardest sports for you to be able to do. I really enjoy the individuality, but also how you work as a team. I mean, no matter what the points that you get for individually swimming, impact the entire team on in deciding if you win or lose the knee or event or competition, whatever, whatever composition, I really loved swimming, I've always loved swimming. But once I got diabetes, there's a we couldn't manage it properly without being safe. But nowadays I can. And I totally love to pursue it. I feel like it's great. It's great for the body. It's great. It's great in general, and just to get your mind off of whatever I mean, I think this is an amazing sport. And I'd love to pursue it. So even if we've had troubles, hopefully, we shouldn't have those same troubles. If the if we get the rule change that we need and want then I shouldn't have the problem, then I can swim and still compete. I don't hate chess or anything like that. I just want some real change. You know, before I let you go,   Stacey Simms  33:57 Amanda, let me ask you what I saw this story on social media. I feel like it's been in every diabetes Facebook group. Obviously it was local television and got picked up by national media. What's the response been like for you?   Amanda Terrell-Orr  34:08 What I want to focus on is the positive first because that is the overwhelming majority of response we've gotten. We've just received so much support. We've received support from jdrf. We've received some for support from Team Novo Nordisk we've received support we were contacted by Dexcom. So all of those are good, but also the heartfelt messages that we've received from other parents of athletes with type one have been moving and have really helped support us through a time where we're getting the kind of attention that we did not expect from this. We expected that we would file something that our lawyer would do a press release and a couple of local channels would be interested. And then we would just wait and see what happens. This has been way more of a response than we expected and the back much Already in that response has been positive and supportive. But as we know, in the public domain, there are always people who don't think about the consequences of what they say on real people. And they come after, you know, a 16 year old in their comments. And so early on, our lawyer told us don't read the comments. And that was really great advice. So now, we basically just engaged with people who have commented on, you know, like a diabetes, Facebook post, or some other kind of social, that's from folks who understand that better. And, you know, we've kind of asked those people who are supporting us, if they're reading the comments, they can address those issues, they can address people who are trolling us. And that would be really helpful to us, because we just can't be beat up that way. But I also think chaffles response was very disappointing to us. And it felt like they were minimizing denying and blaming. And they had the opportunity to look at this much differently in a way that was geared toward change that could allow student participation. And they chose not to do that. It felt like backlash to us that they chose to respond in that way. But by and large, boy, we really appreciate all the support we're getting, it's really the fuel that keeps us going. Because this is hard, it's really hard to be in the spotlight this way, and even made this choice themselves about whether we were going to do this after a lot of research. And so it's wonderful when people support him and say, Thank you, Ethan, for doing this, and lift him up around his struggle. That is just been wonderful.   Stacey Simms  36:44 He's gonna let you have the last word here. When you hear your mom say all this stuff, like what's going through your head? Did you think it would get to this point where it's not nationwide?   Ethan Orrr  36:53 Honestly, no, I was surprised that it got really big, really quick. I was not expecting that at all. So I'm really happy that that people are supporting it.   Stacey Simms  37:06 Well, thank you so much for joining me, keep us posted. love to know how this moves forward and plays out. But thanks for explaining. And, you know, we wish you all the best. Thank you both.   Amanda Terrell-Orr  37:16 Thank you so much for having us. You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  37:30 More information at Diabetes connections.com. I'm gonna link up some of the stories about Ethan that some of you may have already seen most, we're gonna try to link up some follow up as the story progresses, because we're really just at the beginning here, you know, I'm going to follow through this complaint with the Department of Justice, see what the rule changes are like if they come through and see if other clubs and athletic associations follow suit, or do anything that is proactive. If you find something in your local community, let me know if there's a rule change because of this, or I gotta tell you, we've already talked to the coach about Benny's wrestling, and you know how he wears his equipment. I'm double checking, I just want to make sure that we're all good, because while he has been fine so far, and last year, we saw a ref wearing a T slim pump at a couple of the meats. I didn't go over. But Benny did go over after the meets and just say hello, when you just showed us pump and that kind of thing. But even if the ref has type one and wears a pump, you know, there still may be a misunderstanding of the rules. So I I'm definitely double checking all of that, to make sure that we're not gonna have any issues this year. It's complicated. I gotta tell you that my favorite part of the whole story is how Ethan's teammates have hung with him. Right. And they haven't made him feel different. They haven't made him feel like he's to blame for things. We've been so lucky with Benny that he's surrounded with people who support him as well. And if you heard the episode he was on a couple weeks ago. He says part of that is because he just doesn't want to be with people who don't support them. And we're really, really lucky that he feels that way. So Ethan is lucky as well. But Big thanks to Ethan and Amanda for coming on so quickly and sharing this story and making some time for me. All right, Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom system since he was nine years old. We started with Dexcom back in December of 2013. And the system just keeps getting better. The Dexcom G6  is FDA permitted for no finger sticks for calibration and diabetes treatment decisions you can share with up to 10 people from your smart device. The G6  has 10 day sensor wear and the applicator is so easy. I haven't done one insertion since we got it Ben he does them all himself. He's a busy kid and knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is reassuring. Of course we still love the alerts and alarms so that we can set them how we want if your glucose alerts and readings from the G6  do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. If you are listening to this episode as it goes live on September 7, then I wish you a very happy new year. It is the Jewish holiday of Rosh Hashanah. And as you probably know, these podcast episodes are taped and scheduled in advance. So I am not working today I am celebrating the new year with friends and family. And I don't mind sharing that. We always go to our same friend's house. I don't have any family locally here in the Charlotte, North Carolina area. And our friends this year, were probably having like 20 to 30 people, they bought COVID tests for everybody those over the counter COVID test as I'm taping, I haven't taken it yet. When you're listening to this, I will have taken it. But I thought that was really interesting. We're all vaccinated this group we've gotten together before earlier in the summer, it was actually the first group of people that I got together with in Gosh, I want to say maybe late May, you know, we'd all been vaccinated, but he's really excited. Nobody knew Delta was coming. And so we know we're all reacting to this in different ways. I'm really, I guess the word is interested that this is going on. I wonder how many other people are doing this for small private gatherings. I'm excited to be celebrating and may it be a sweet and happy new here because my goodness, we definitely need it. So I'm gonna leave it there. Big thanks to my editor John Bukenas from audio editing solutions for really jumping in here. We put this together much more quickly than our usual episodes. So thanks so much as always, John, and thank you so much for listening. I'm Stacey Simms. I'll see you back here on Wednesday for in the news. That'll be Wednesday live on Facebook at 430 Eastern Time, and then we turn that into a podcast episode for Friday. Alright, until then, be kind to yourself.   Benny  41:35 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrong avenged

How much do you really know about the only inhalable insulin? This week, Stacey interviews the CEO of MannKind, makers of Afrezza. Mike Castagna talks about how Afrezza works, misconceptions about the product, the worldwide market, pediatric studies and lots more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. More about Afrezza Tim Street's blog Diabettech  Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode transcription below: Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom This is Diabetes Connections with Stacey Simms. This week all about Afrezza How much do you really know about the inhalable Insulet. I had a great conversation with the people who make it   Mike Castagna  0:34 For me, it's about using the right product to meet your needs to get you in control. And if you're doing well, great, we're going to avoid the long term complications. But if you're not doing your health, and you gotta really try to find the best set of tools, they're gonna make you successful and fit your lifestyle.   Stacey Simms  0:47 That's mankind CEO Mike Castagna. We talked about how Afrezza works misconceptions the worldwide market pediatric studies and lots more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. We so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin. And this week, we're talking about the use of the only inhalable insulin, my son was diagnosed with type one right before he turned two, he is 16. My husband has type two diabetes, I don't have diabetes at all. But I have a background in broadcasting. And that is how you get the podcast, I have to say that personally, my family is very interested in Afrezza Benny really would like to try this seat. Of course, as I mentioned in that tease up there, they're looking at pediatrics, he is still under 18. So it's not proof for his age group. But we're watching it really closely. And I have a lot of friends. A lot of bloggers and people in the diabetes community have talked about this for years. And some things have changed. So I wanted to have them on the show and find out more. So a little bit of background for you. If you are brand new to all this, Afrezza was approved in the United States in 2014. And the company that makes it is mankind. For a while it was sold by Santa Fe, but then mankind took it back. It's one of those things where sometimes the business side seems to have gotten more attention than the product itself. So what is Afrezza it is a powder, it comes in cartridges, and you suck it in you inhale it with a special inhaler device. To me, it looks more like a whistle than a traditional inhaler like an asthma inhaler. It's not like a big tube. I'll link up some photos in the show notes. I'll also link up the Afrezza website so you can learn more and see their information. And my guest this week is Dr. Mike Castagna, the CEO of mankind now he has a Doctorate of pharmacy, he worked as a pharmacist behind the counter for CVS at the start of his career. But then he went back to school and he got an MBA from the Wharton School of Business. He's fun to talk to he doesn't mince words, and he truly believes in this product, I do have to tell you that Mike mentions monomeric insulin a couple of times, I'm going to come back after the interview and explain more about that give you a better definition. All you really need to know is that it's faster than how liquid insulin is made. And all of that in just a moment. But first Diabetes Connections is brought to you by Daario. And over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions on how to succeed, get the diabetes management plan that works with you and for you, Daria is published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash Diabetes Connections. Mike, thanks for joining me, I'm really excited to catch up. And look, I'm stuttering because I can't believe this is the first time we're talking to you. But thanks for coming on. Oh, thank you, Rodney. I'm super excited before we jump in and start talking about Afrezza Can you give us some perspective kind of dial back because mankind is not. It's not a name that came out of nowhere? There's really important history. Can you kind of talk about that a little bit first?   Mike Castagna  4:14 Sure. Mankind comes from our founder named after Al Mann and Al Mann was a true innovator. He started I think 17 companies and everything from the cochlear implant to the pacemaker to insulin pumps that many of us know today as Medtronic used to be called mini med. And Al Mann built the insulin pumps over the 80s and 90s and was very successful and sold that company to Medtronic. And then he took literally $1 billion of his own money and invested in mankind. And he had put this company together through three companies he owned the technology to make Afrezza was really a combination of companies and the reason he was so dedicated as he saw in the pump market, which we now see today on CGM was that the variability in mealtime control was so high and the fluctuations you see that the influence takes about an hour and a half to kick in. And it's hard to get real time control if you can't get a faster acting insulin. And so he set out to make a real time acting insulin, so phrases and hailed as monomeric. And that was really what the magic was in our technology making a dry powder was was free dryness, if you heard of dippin dots ice cream, we have basically large dipping machines in our factory, but we free dry the particles to make a freezer and under stabilize the monomeric form. So when you're inhaling, you're inhaling influenza, as soon as it's in your blood is active, or when you inject it has to hold hexamer and has to break down there were about 45 minutes. And that's how you can make it stabilize an injectable form. But it has to break down and then it starts working. And that's why there's always this lag effect between we see injectable and foam in and help us is very different products were categorized with real time rapid acting, but the name mankind comes from elmen and the guy who probably 60% of people on pumps have their own pumps that he created. So amazing gentlemen, huge contributions to diabetes and millions of people were alive today because of his work and his generosity and roven to take that forward here and kids and frozen inhaled insulin.   Stacey Simms  6:06 I mean, never look at dippin dots the same again.   Mike Castagna  6:10 I see a large factory of they don't like it, you know, we can always make different types of things don't go well.   Stacey Simms  6:15 I love it. Let me ask you to go into a little bit more detail about how someone who uses Afrezza would actually use it. Can you talk a little bit about like a daily routine?   Mike Castagna  6:25 Yeah, I mean, I know, you know, well, you're in this disease. I mean, people sometimes graze all day, and they just kind of ride their sugars and take a little bit some along the way or many boluses. And some people you know, eat once or twice a day, or some people, you know, carb restricted and everyone has a different way. And I think that you know, the big thing difference was for the patients that I see is, it's in the moment, meaning you don't have to time your meal and your insulin, when you're going to take it and where you're going to be. As soon as your food arrives. You take your first dose.   Stacey Simms  6:50 Most people I know who use Afrezza take a long acting insulin with it. Is that pretty standard for people with type one?   Mike Castagna  6:57 Yeah, I'll take one year, right? Yeah, you need a basal insulin of some sort, you know, and, and a meal time was held, we do have some patients on pumps where they will use their punches for their basil, for example, and use a phrase for real time corrections. So you know, the average patient is very different. We have some patients that are type twos, you know not not on any basil, you'll need to be on basil for if you're type two. But if you're type one, you need to basil, long acting insulin, and you need your meal time. And we know the biggest problem in this country is still mealtime control is the number one thing people with diabetes struggle with. And it's a big reason why, you know, six, or seven or eight, you know, eight out of 10 people basically are not a goal on insulin because of the mealtime control. So it's a daily challenge for everybody.   Stacey Simms  7:39 Can you talk a little bit about how Afrezza is kind of measured out? Because when we think of mealtime, insulin, everything's a carb ratios. And especially as I mentioned, if you're on an insulin pump, you're you're putting in the carbs that you eat. So how does that work?   Mike Castagna  7:51 Yeah, it's funny, I get into many debates with people because, you know, I'm a pharmacist by training, but I'm not the smartest guy. But I couldn't do all the work people do every day to influence sensitivity ratios and carb counting and timing. And all I can tell you is everyone's masks off by 50%, one direction or another. And so we have this false pretense that we're that accurate. And dosing are influenced by down to the half a unit or one unit. And the reality is your angle of injection can decrease, you know, change your absorption by 25%, your site of injection can change absorption, your your stress level can change your impact with your insulin, there's so many things that go into your daily dosing of insulin, that, you know, being that precise, down to the unit is not as accurate as we all think. And I think that's that's one of the misnomers of, you know, the timing is what you really struggle with when you're using injectable insulin, and you just don't know what's going to happen. You know, when people I guess doctors often you know, you don't have to carb count with Afrezza . And they give me funny looks. And the reality is, you know, we've never done a study where you're carb counting to get your dose of insulin, that's, you know, so becomes a four 812 dose linear all the way up to 48 units, it's additive, and you just got to be close enough. And so it's about a two to one ratio, you know, there's no direct pulmonary equivalent to injectable insulin, unfortunately, but, you know, people are taking five units of injectable insulin per meal, they're gonna need about eight units of Afrezza and maybe even 12. And you're gonna figure that out, it's your first meal or two what what the right dose is for you. But you just got to be close enough. And that's a big misunderstanding for people of how accurate the dose has to be. This is the sixth dose cartridge is a big problem. I know plenty of type one patients who take for a 1224 meal, especially they haven't Chinese food or sushi, they just they dose a lot. So I think that's something people have been comfortable, so dramatically different than anything they've ever been trained or taught in their history of living with diabetes.   Stacey Simms  9:36 I would assume that a prescription for Afrezza comes with a doctor's visit where someone whether it's someone who works for Afrezza, or the endocrinologist talks to you about how to do this dosing. You said you figure it out, but I've got to assume that you're not just sending people home with this inhalable and say, just test it, I mean, right somebody, you're at a ratio   Mike Castagna  9:59 and I think That's the key thing is, you know, having patients understand because it's odorless and tasteless. So you inhale, and you're like, what did I get it? And I'm like, yeah, if you inhaled, and I have the second, it's in your blood, it's in your lungs, it's breath activated. So you can't really, of course, you can try to mess up something. But we have something called Blue Hill, where we can show proper inhalation technique in the office on an iPhone app or an Android. And so you know, we hope that patients are being trained either by our trainers or the doctors offices, and will propagation technique looks like that's number one. And then number two is the right dosing. And as you know, individualized dosing is important and fun. And, again, that's why I say we take a lot of the math out because it's either gonna be a four or an eight, and all of a sudden, you're like, Oh my god, I'm gonna take an eight units, it's a lot it's really not when you're taking inhalation units versus injectable units and that's what people got to get comfortable with if their first or second dose so they really do figure out this meal did this or pizza is going to take longer so pick another dose and now our people do figure it out pretty much within the first week. And then there's one thing actually I want to mention because I often forget this is because injectable insulin is such a long tail it's in your body for four to six hours before it's out and that feeds into your basal rate your long acting and so when people switch over presence pretty much out of your body in a net roughly an hour and a half. Sometimes people need to adjust their basil and that's something to watch out for if you do switch to Afrezza enter you're struggling with with some of the basil rates. Some patients you know I hear people anecdotally you know, we don't want to study their the bump up their basil 10 15% on Lantus. And I've heard patients on to see that because it does have that long tail of down there in front sometimes on the basil. So there are the other metrics patients have to watch out for when they are switching to the product. It's not just the uptime, it's also something that basil where you look at   Stacey Simms  11:38 I have a question and I i apologize because it's a it's a bit ridiculous. I'm gonna ask it anyway. Right back to the interview in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon, it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle, you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon.com slash risk. Now back to my interview with Mike, where I will ask that ridiculous question.   You had mentioned it's tasteless, odorless, I recall hearing and I'll have to fact check this. But I recall hearing that years ago dandruff shampoo, they had to add like that tingly feeling because people didn't think it was working like it's totally fake. But people just didn't believe it was a medicated shampoo because it didn't have an unpleasant sensation. Have you thought or talked at all about adding like a flavor or a feeling to so people really know that they got it? Or is that just really bananas?   Mike Castagna  13:12 If somebody might company come and talk to you ahead of time? There's somebody internally who wants us to look at like cherry flavor Afrezza especially as they go into pediatrics? And the answer is, look, there's blueberry Metformin because the metformin smells awful and tastes awful, probably. So you know, those things are possible. We've never done them. And to my knowledge in this industry with dry powders, it is a question that came up recently. Is that should we be thinking about the cherry flavor Afrezza or some other flavor? And I think the answer is TBD. We I don't know what the date is on inhaling the food coloring dye or whatever. Yeah. But that's some of the stuff we have to justify that it's safe and effective. And along with FDA would want us to test but they come up recently and another internal discussion. And since you're asking, I think we'll look at it, even if maybe there's a way to even show a placebo, that's a cherry flavor or something right a one time dose to see what it's like. So I don't know. But now, but people like I said, it's sometimes you get a call, like you know, when you take a phrase of one out of four people will get a cough initially. And generally there were the first four weeks that cough goes away 97% of the people. So I always tell people, you're having a cough, like as long as not interrupting your life, it should slowly get to your first refill. And it should be mostly resolved by that your body's getting used to putting a powder in your lungs. But that's uh, you know, when people ask, what's the difference between injectable and inhaled in terms of safety, you know, you're putting a drug powder in for the first time in your body and your body could choose that. And the number one thing that's different, were injectable insulin. You know, you have other other things. You're dealing with injection sites and pump sites and scar tissue and things like that.   Stacey Simms  14:48 Does the body actually acclimate to the powder or is it just a question of someone gets better and used to the inhalation sensation?   Mike Castagna  14:55 You know, it's it's a good question. I don't know if I have a black and white answer here. bodies give. Yeah, my guess is the body's getting used to putting a dry powder in and just exit and you get used to like weed. You can drink a glass of water before and after and help you minimize it. But it's generally like that's what it feels like it's not a productive call frightening, there's not a call to happens 10 minutes later, it usually happens. We have to inhale.   Stacey Simms  15:17 You mentioned BlueHale , can you tell us a little bit more about what that is?   Mike Castagna  15:21 Yeah, so BlueHale  is to two different things. The first one that we're looking at is with the patient training device. So we can show you whether you had a good emulation or not a good emulation and show you that technique. The second version, actually, you can detect with those you put in the cartridge and hilar. So it has a proprietary software there that we can see what cartridge you put in for the adapter. And it'll tell you on your app, if you took a for a 12 or 16, how much you took in that session. And then we hooked integrate that with the CGM data. So now you can show those response curves on CGM one day and eventually I want to get into AI and predictive analytics. But we're not there yet. But we think that's the magic of what people really want, which is one that I use the thing when you live with diabetes, you just must remember and be that perfect to know exactly what those you did with them. You took it, what meal you were and then I simulated being a patient for a week. And I realized I could remember if I took a four and eight, I take a six or 620 is that 30 minutes or one hour like it was it was amazing. When you just think about life and people are human. They're there. They're human. So they're not keeping track. And they're not that accurate. They're just estimating. And that's when I talked about the dosing of insulin, like we're always estimating everything, we're estimating the time our food is going to come and how long it's going to work. You know, what the carbs are? How much am I gonna eat or drink? Like, it's all accurate? It's all off. None of it's that accurate. That to me is the thing I realized when I was thinking of doing one of those a disease, you don't you think they're perfect. They're not. They're human beings. And that's when I see one out of five doses of injectable insulin are intentionally missed. And the predominant one that's missed is actually lunchtime, which makes sense to wear out in a social environment. They don't want to inject. And by the time they get back, they forget it's probably too late. Or you're already high.   Stacey Simms  17:00 What do you mean by intentionally Miss? You mean? Like they people just forget?   Mike Castagna  17:03 No, no, they intentionally knew they should take a dose of insulin, but they're in a lunch conversation, or they forgot their insulin in the office. Or they'll have their CGM receiver on the bike, or they essentially don't they miss one of the five doses. So if you're missing 20% of your doses, it's really hard to get in control. And there's all kinds of reasons, but that's intentional omission versus unintentional. Which is I forgotten.   Stacey Simms  17:23 I'm curious what the sources on that that's, I mean, I don't doubt it. I'm just curious.   Mike Castagna  17:27 Yeah, I couldn't find it. follow up on that. I have your email, I'll look for it. Yeah, no, because I didn't believe it. And then there was a study done with one of the pens coming out that has digital connectivity. And I looked at it and I looked at the data and like, wait, if a person needs three times a day, seven days a week, that's at least 1721 doses, right? And I think the average person is taking like 1212 shots a week. And I'm like, Well, that doesn't make sense. But you realize, you know, again, we're human, people aren't always as compliant as we want, or they don't eat three times a day perfectly are the two big meals, you know, everyone does something different. So having insulin that meets your needs, and your lifestyle, I think is really important in the world. And you know, look, we like our products, obviously, we're here, we love the Afrezza. But But I also just for me, it's about using the right product that meets your needs to get you in control. And if you're doing well, great, you're gonna avoid the long term complications. But if you're not, you own your health, and you got to really try to find the best set of tools that are going to make you successful and fit your lifestyle. And, you know, obviously, we're not doing well when 80% of people on insulin on a boat. I mean, that's that, to me is the number one thing, I look at this country and say, well, despite all the adoption of pumps, and technology and CGM, we still have not made a meaningful difference in percent of people to go. And that's frustrating.   Stacey Simms  18:35 Way back in the beginning of this interview, we talked about Chinese food and pizza. And I'm just curious, you know, these are things that are hard to dos for, because they they kind of they come later, you know, what most people listening are very familiar with, and I think probably have their own system for dosing, whether it's an extended bolus or injecting more than once. How would you do something like that on a Friday? Is it a question of you would take what you think when you're eating, and then again, in a bit later, like, how do you account for those high fat foods?   Mike Castagna  19:02 Yeah, you know, I'm going to pick on Anthony Hightower, who I know you interviewed before. So I actually met Anthony on a bed over social media. And he had showed me your servers where he ate pizza. So I'll pick on him because I want the public discussion here, sir. He pizza and his sugars are basically flat over the two, three hours post meal. And I said, I'm like, shocked. He's like, this is something people cannot do naturally on the history of injectable insulin, they they always struggle. And when you eat pizza, you're going to struggle not just for hours, but potentially for the next day because just throws everything off. I think in his case, right? I've watched him he took a big dose up front, you know, let's say he's gonna take 12 units of injectable he took 24 units of Afrezza. And then he washed her wasn't an hour, and then an hour she was above where he started. He took another dose, maybe took a four and he has to tap it off. And then an hour later, just thought was too high or not right. But you can always keep your sugars in that kind of control. That's one of the studies we did back in 2018, called this test study was showing that you could do as soon as one hour with no more hyper risk. And that was a big concern of people, how can I do that one hour, well, pretty much hit its peak effect in one hour. So if your servers are still moving in the wrong direction, you can correct them at that point. And so that's where someone on pizza or Chinese food, like, yeah, it's a high dose up front and may manage it through the whole system. Or they may see an hour or two later, they're still high and to take another dose, that they can bring it down at some point.   Stacey Simms  20:20 Alright, let's talk about the big questions that people generally have. And that the one I hear the most is, Is it safe? Right? Is it? Is it okay to inhale this stuff into my lungs? Can you talk about the studies that you've done?   Mike Castagna  20:32 Yeah, I think if we were able to make inhaled insulin 100 years ago, we'd be scratching our heads those who would inject themselves three times a day. So I think it's just an unfortunate matter of 100 years of difference. But we studied a phrase that probably over 3000 patients 70, some trials $3 billion over 20 years, like, that's how much money time and energy is going into prove the safety and effectiveness of this product. And you know, and I tell people like you know, there is no data to say that it's not safe. We have all the rodent studies, all the CT scans that along looking for fibrosis looking for pulmonary issues, we found nothing. So it doesn't sit in the lung. There's an old product called exubera on the market years ago. And exubera was a sugar based manatal formulation which got absorbed over time into your lungs in a friend this case, the it's got water and human influence. So when we ask about what ingredients are you worried about the human influence, human influence, it's the whole AI base, but it's human influence characteristic, and water is purified. So we know that safe and the other only other carrier in our products SDK p which is a excluded product that is not metabolized in the body, it's just 100% extruded. So you know, there's three ingredients in our product. One is human insulin, one is water, and one is tkp. And SDK p comes out of the system. So I don't I don't think the body is afraid of human insulin. And what are so I think, you know, I always struggle with this topic. Because, you know, what happened is there was some lung cancer cases and Newser, were they there was a couple of our data. But you know, in the seven years since FDA approval, we've seen no safety signals come up in the postmarketing. We have almost 10,000 patients on the presidency. I know people in the drug for 1012 years. And so, you know, we don't see anything that gives us concern. And we're going into kids now, who would have to take the drug for 40 5060 years. So I think it's hard to prove something that you've never seen. But safety comes with time. And I think the good news is product has been approved by the FDA for seven years now. And we've not seeing any safety signals in our database, which we look every year, our rems program ended early by the FDA and and we've continued to show good data and all the studies we've done, we've not seen anything new come up in our anywhere safety issues. So if you're, you know, the populations, I would say if you have COPD, and asthma, this is not the right drug for you.   Stacey Simms  22:41 So a dumb question, though. If you have diabetes, and you smoke, can you get an Afrezza? prescription?   Mike Castagna  22:48 We would say you should not? Yes, we have a warning for that.   Stacey Simms  22:52 Well, I just wanted to be clear that there was an actual warning, it wasn't just a please don't because it's bad for   Mike Castagna  22:57 warning. Don't   Stacey Simms  23:00 tell me about the study with kids. Because I've got one, I've got a 16 year old who was quite interested in this product.   Mike Castagna  23:06 Yeah, no, I just found out Unfortunately, the dagga three year old cousin in the family have just come down with type one. And she will, she'll be four and our studies gonna go down to four years old to 17 years old, when we launch it. So I'm excited, we had to do a study to show that the pharmacokinetics and dynamics of inhaled insulin are similar in kids as it as adults. And so once that study was complete, we we wrote a protocol down to the FDA and said, We'd like to go into the next phase, and now run a larger study head to head against the standard of care. And the FDA has pretty much signed off on that protocol at this point. And we have contracted with a third party to now run that trial. And we'll be having our investigator meeting here in next month. And so hopefully, we'll see our first patient in the four to 17 year old range, probably here in September, October time frame. So super excited, long time to get here took too long from my perspective, but can't wait to help kids. But our founder Outman invested, he became very wealthy when he sold the insulin pump company. And he took $1 billion of his own money and made Afrezza inhaled insulin because he felt the problem with the injectable subcutaneous delivered insulin was it just took too long to work. And you know, somebody has an hour lag effects from food. That's real timing, it's always hard to catch those two even. And so he really wanted to make an inhaled insulin that really mimic a physiologic insulin that you see in the body. And he felt the only way you could get there was through a dry powder, lung delivered instantaneous insulin, you can also get there through an implantable pump. But that didn't work out when they tried that back in the 90s. I recall. So people got infections and things like that. So that would that didn't work. So they really were going to get a in my mind that physiologic inform that's gonna be monomeric stabilized is probably going to happen only through the inhaled route. So we have we have to get comfortable with this from overall efficacy and safety. Otherwise, you're not going to really ever get this control that people are looking for real time.   Stacey Simms  24:55 No man, he lived long enough to see Afrezza approved, didn't he?   Mike Castagna  24:59 He's All approved. And unfortunately, I'm here because he died on my daughter's birthday. So I was debating whether to come to mankind or not. And I'm very superstitious, the Al Mann pick the day he died. And he died February 25 2016. And then they made decision to join and help save the company and save a frozen kick on the market. Because I think, you know, I saw all these wonderful patients stories online. And I said, these patients like Anthony Hightower is one of them, what they did something that no one else did, they did something we never did in our clinical trials. And so I got to talk to them. And I realized we just didn't dose it properly. So you go back to the development of the product, a lot of the challenges were under dosing because everybody's trying to compare one to one to injectable insulin, and therefore one of underdosing patients, and therefore, they got equal outcomes didn't do any worse than injectable insulin per se. But could they have gotten better outcomes if we dosed improperly? Right? And I think that's, that's the state of we're now trying to generate to show that the kids buddy now be head to head, or if he knows him properly, what happens? Right, and that's we're really focused on right now.   Stacey Simms  26:01 Is there anything that you wanted to talk about that I haven't answered?   Mike Castagna  26:04 No. I mean, we're only available in the US, we're in the process of going to Europe. So I don't know if you have any. Yeah, we do. Though, so I know, we have patients on a name patient basis in Germany, and UK and Italy. So you know, their governments are actually important a president and pay for it. We're in the middle of filing for Australia. We were approved in Brazil, and we're going to India so so you'll see this more and more around the world. You have listeners in those markets. There's not gonna happen this year. And hopefully, the next year or the following year in some of these markets, we'll be looking at bringing it to more patients in those markets.   Stacey Simms  26:37 Well, and just got a big approval here in the United States for Medicare patients. Right.   Mike Castagna  26:42 Yeah. So that one, I, you know, we get a lot of questions on that one. And so you know, this market CGM patients were told you need to be injecting yourself, I think four times a day, we couldn't get your CGM. So then doctors were not getting patients Afrezza. And so we were able to ask CMS to change that, and they did to the year but rather haven't done they're not done. And so here we are a year later that that policy is now being updated. I want to thank CMS and all that you're helped make that happen. And I think it helps in people in CGN, because I understand that removes some of the other requirements to get CGM, even an injectable these patients so little mankind was the one who started that process. And then we're able to help a lot more people. So it's great. And we're trying to get Medicare $30 a month insulin. So we have Medicare listeners. And you know, we're trying to make sure we help get patients access that are on Medicare. I think that's important.   Stacey Simms  27:33 That doesn't stack up in terms of cost in the United States.   Mike Castagna  27:36 Yeah, I mean, you know, fortunately, the billion dollar debacle in this country is drug pricing, as we all know, and as a pharmacist, I know firsthand when people go through an LMS they're on how many co pays are on. And so we really have tried hard to make sure that no patients pay no more than $15. So we have copay card programs, we actually have a free drug programs, they really can't afford it, we'll give it to you for free. If you're going through the prior authorization process, we give it to you for free while you're going through that. So we all want payers and reimbursement to be the excuse of why a patient can't get access to our product, we think that people will do well on our product, we're willing to take that bet that they'll see good results. And if they see good results, the payers will usually pay for it. And it says you may or may not know that there's a monopoly in diabetes between two insulin players, and three payers, who are all working together to make sure there's no competition. You know, that's unfortunate, but they pay to make sure that patients have a difficult time getting Afrezza . And that's always one of my frustrations of competition or diseases. You know, 400 years, we've seen the precise the dispensing from 20 hours a while 95 and let's say miles, hundreds of dollars. You know, for me on the payer side, we want to make sure patients we try to bring it down to about $15 on commercial and Medicare, you know, they generally pay comparable to what they would and some Medicare plans a little bit higher I can you know, that's a hit or miss when you when you go to submit for reimbursement, but we try to do everything we can to make sure people will have access to our product   Stacey Simms  28:57 $15 for $15 for commercial patients, no, no, but what is it? What is it for? What do you get for $15? Is it a month? Is it a   Mike Castagna  29:05 my week? Yeah, whatever, whatever. You gave two boxes, three boxes, whatever is on that prescription for that month,   Stacey Simms  29:10 for the month. Okay, I didn't mean to interrupt you.   Mike Castagna  29:12 I don't think I know, I was gonna say I forgot we actually have a cash pay program. And people are paying cash for their insulin. And we do see several 1000 people a month paying cash for injectable insulin, we have influenced savings comm where it's $99 a month for frezza. And you know, can you a bigger box or more doses, you might pay 199 but we tried to make the cash price, you know, roughly $100 a month. If we if you had no insurance, for example.   Stacey Simms  29:37 I'm not sure you can answer this question. But I will ask it anyway, is the biggest challenge for you all the failure of exubera? Is it just people not knowing what this is? You know, as you move forward, you know, what is the big challenge to get more people to adopt us?   Mike Castagna  29:51 I mean, for me, the biggest challenge are the doctors. We created a program we basically gave it for free to patients for two years for 15 bucks. Like no no priority. Nothing, we just charge you $15. And that didn't change a lot of doctors from jumping on board. And doctors just don't know our data. And so they think this product doesn't have a lot of data behind it. And they don't know our data, they don't know. Like when I would ask a doctor, how fast from the time you inject your bolus, your pump to the time you look on a CGM, that your institute sugars are coming down, and I get in these endocrinologist, I'll get five minutes and mediate and 20 minutes an hour, the answers, I need 90 minutes, 220 minutes, that's the answer. And so they don't even know the pharmacokinetics and pharmacodynamics differences between injectable insulin inhaled, and then you have doctors, right, you know, calling some of these ultra acting drugs faster, we'll look at the package inserts, they're no faster than their old products. And there's a lot of misperceptions out there some of these newer launches of old tracking insulin, and to me they're, they're really not that much different than the predecessor and look at the data, you know, there's not a faster, there's not dramatically faster onset or offset or, you know, a one c lowering or weight gains on very much the same. So, no, I think it's just a matter of doctors trying to really understand the data.   Stacey Simms  31:02 Before I let you go, are there any plans in the future to change anything about the way it looks? or different colors? I mean, I know it sounds kind of silly, when you're just trying to get people to adopt the new technology, but from a user standpoint, and look, I know, you've heard all the jokes of my friends who use this will make you can't comment on designers. They don't say anything, they'll make comments like, you know, taking a hit or whatever, right? I mean, it's it's inhaling, it's this little thing that you're, you're inhaling, it looks a certain way. I'm curious if the cosmetics of it are anything that are on your radar, or needs to be improved even?   Mike Castagna  31:36 No, I mean, I think when you spend, you know, $3,000,000,000.20 years doing a new drug development or taking 100 year old product and reinventing it, you had to get that right in terms of device design and airflow dynamics and consistency. And those. And I think all that's really important because, you know, misperception that oh, my God, it's going to be less can be more variable than injectable insulin. And the data just doesn't support that statement. And so for us, we have one of the world's most unique installation platforms across the entire pharmaceutical industry, we deliver more power to the lung, the most technologies out there. So that's why you can get consistency, those two those, and you don't have a lot of variabilities, because our technology and our device is called a low velocity inhaler. And what that means is there's a resistor that helps slow the powders as they're coming out of the inhaler. So they get deep into the lungs. And that's why you get that nice absorption curves that we see. And we're most inhalers or high gloss inhalers. So it's just enough sucking air as hard as you can, and hoping you get you know, 20 30% of lung drug into your lungs, and mostly stuck in your teeth to device in the back of your throat. That's most dry powder inhaler technologies out there today. And so that's something unique to us and our technology and our device, they all work really well together, you couldn't just take our powder and put into another inhaler, and or just as well would not work. So yeah, we're pretty happy with the device I we are going to other diseases. So you know, we're we're going down to the FDA with our partner for an approval in October for pulmonary hypertension patients. And we have several other orphan lung areas we're going into to help more patients with lung disorders. So you know, I think that's important, like our, our technology, our inhaler, our platform is gonna be used in more and more patients over the next decade than just diabetes.   Stacey Simms  33:13 Well, that's what I was gonna ask is, if it works, so well, you know, will you partner with other medications? That's great to hear.   Mike Castagna  33:18 Yeah, you know, we're really busy, we probably have about 10 to 12 formulations of products working on this year and five marone products in the pipeline. And so it's it's a really good time of mankind, we're super excited to be here. And it was a turnaround, the company struggled for many, many years. And we're on our way to success. And I think, firstly, you'll be you'll be hearing more about it. So I know it's been a long time. And maybe you didn't talk to us yet. But hopefully you'll talk to us more and more as we continue to generate new data and more more patients start using it.   Stacey Simms  33:45 I'd love to, I'd love to, especially with the kids programs. And like I said, I've got a 16 year old who is very curious about this. And, you know, once once safe and effective. Once we get all that safety stuff in here. It's mom says, you know, I'll definitely I know, I would like to check it out. So I really appreciate you coming on and spending so much time with me and my listeners and explaining all this and we'll definitely talk again. Thanks, Mike.   You're listening to Diabetes Connections with Stacey Simms. More information at Diabetes connections.com. Always on the episode homepage. I also have a transcription as well, sometimes those podcast players don't display the show notes and the links. So if you have any trouble, just go back to Diabetes connections.com. And I just want to say that I did reach out to have Mike or somebody from Afrezza on the show. And you heard him say, you know, it's been a while, um, you know, it just took a while to connect to the right person. Let's just say that, and I will have them back on because lots of good stuff is happening. As you heard. I want to take a second and kind of explain Monomeric insulin and, you know, I'll be honest with you. The scientific points here are really not my strong suit. I'm a communications major, right. So I did what I always do, and I am People who know a lot more than I do to help me explain it. I went to the Facebook group Diabetes Connections as a group. And you know, I said, How do you explain monomeric insulin I know it's faster. And Tim Street, who is just wonderful and runs the diabettech.com page that's like diabetes tech diabetic, and I'll link that up as well. He provided this explanation, which really brought it home for me, and boy, I hope I'm pronouncing everything correctly. So Tim wrote, insulin naturally links its chains together to form stable molecules. Typically it connects two together and then links three of those two chains together. Additionally, to create six This is highly stable and described as hexameric. In order to use these chains, you have to break the molecules apart to single chains, which are monomers. Typically fast acting insulins are stored as dimers, two monomers connected, which are easier to split, then hexamers. by storing the insulin as a single chain, a monomer, the body doesn't have to break the chains to instantly use the insulin molecule it receives. And that is why Afreeza wraps the monomeric form in the capsules, to make it ultra fast. Thank you, Tim, that actually made a lot of sense. I gotta tell you, we have the smartest people and the kindest people in this Facebook group. If you're not there yet, and you want to join, come on in, I highly recommend it. You don't have to be a Tim Street. You don't have to be able to explain these concepts. You do have to be nice. And you do have to not post a lot of drama. I'm very tough on my diabetes groups. I run two of them. They're very nice and friendly places for a reason. But Tim, seriously, thank you so much. That was a great explanation. And I really appreciate it. Diabetes Connections is brought to you by Dexcom. If you're a veteran, the Dexcom g six continuous glucose monitoring system is now available at VA pharmacies in the United States. Qualified veterans with type one and type two diabetes may be covered. Picking up your Dexcom supplies at the pharmacy may save you a lot of time to connect with your doctor for more info Dexcom even has a discussion guide you can bring with you get that guide and find out more about eligibility. It's all@dexcom.com backslash veterans, and all the information is always at Diabetes connections.com. Before I let you go, just a quick note about back to school, I have never done less. I packed up a bag for Benny to bring to the nurse. He brings his daily supplies with him every day in his backpack. But of course, like most people, our nurse has backup supplies for him. So I put those together. He brought them in along with our plan or orders, you know from our endo. And that was it. I haven't set foot in the building. I'm not sure when I will go in or if I will go in probably when you forget something or they run out there. But I've never done less work. You know, I did a lot of work over the years to go to school and meet with people and he's got it. So not much to report. It feels very strange. All right. Please join me this Wednesday when we have our in the news live on Facebook every Wednesday at 430 and then we turn that into a podcast episode. I love doing that. It's been a lot of fun. I hope you're enjoying it. Give me your news tips. If you've got any from this week, just email me Stacey at Diabetes connections.com thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then be kind to yourself.   Benny  38:27 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

My son Benny is back from a four week trip halfway around the world with a non-diabetes camp program. He says it was amazing! To be honest, I had a really hard time with it. This week, we share how we prepared, what went wrong, how Benny deals with feeling different on these types of trips and a lot more. Previous episodes with Benny: 14 years of T1D Benny & Stacey talk untethered and more on their way to the endo Talking about Control IQ & addressing kids' questions about diabetes Our 12 year diaversary Ten years of T1D - our whole family speaks up This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcript below: Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first pre mixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, I sent my teenager with type one halfway around the world for a month with a non diabetes regular camp program all the way to Israel. He's home safe, and I thought it would be fun and interesting to talk to him about how it all went. Are you glad you went with all the work you had to do?   Benny  0:43 I am so happy I went I'm so happy you guys let me go. It was amazing.   Stacey Simms  0:49 Benny is 16. And we share how we prepared what went wrong, how he deals with feeling different on these types of trips, and a lot more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. Always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny, who you're going to hear a lot of this week was diagnosed with type one right before he turned two. He is now 16. My husband lives with type two diabetes, I don't have diabetes. I have a background in broadcasting and that is how you get the podcast. And I've talked about this for a while on the show. We've been planning for quite some time. But if you are brand new, earlier this summer, we sent our son Benny to Israel for four weeks. I still can't believe we did it. bit of background. He has attended this irregular summer camp about four hours away for us in Georgia since he was eight years old that first year for two weeks. And for a month every year since except 2020. Of course due to COVID. He also goes to diabetes camp. He started going to the sleepaway diabetes camp for a week, when he was seven, he went to a little day camp in our area, he mentioned that he gets called kudos, he went to that when he I want to say he was three or four years old, he was very, very little. And that's a wonderful program as well. But for this year of the regular camp, when you are a junior, when you're going to be a junior in high school, there is an option to go to Israel. So while we don't know all the staff who went we know the program, they know us the kids know Benny, and they know the type one situation as much as friends can. Even so this was really hard. It was mostly hard just for me. But I'm going to come back after the interview and tell you a little bit about the lowest moment I had for real when he was away. And how it was it was honestly perfectly timed. I was so lucky to have the support that I did. I'll do that after the interview. A couple of notes before this interview. If you are new to the show, and you haven't heard any of my interviews with Benny before, he is a bit silly. He's a bit sarcastic. And you know, I think our whole parenting or family style leans a bit toward that toward darker humor. So please No, and I'm sure I don't have to say this. We take diabetes very seriously. He is in great hands in terms of health care, and our endo who we've had, we've been seeing him since he was two things were doing great. I also want to say that I am a bit troubled by the comments you're going to hear Benny make about diabetes camp, but I'm choosing to leave them in like it's how he feels right now. Just remember when you listen, this is a 16 year old, who may not have the best memory of when he was younger. But I know how much he loved diabetes camp and how important it was for I think for the confidence that you're coming from him now. And we'll revisit this issue when he gets older. But we have done other episodes about how much he liked camp. So I'm gonna link those up as well if you want to listen. But look, how you feel is how you feel. And that can change at different ages doesn't make it any less valid. So I'm leaving those comments in. And after you listen to the interview, if you have any questions or stuff you'd like us to follow up on, please reach out, you can always go to Diabetes, Connections comm and contact me through the website. We have a Facebook group Diabetes Connections, the group, and of course, I'm all over social media. But I'd love to know what you think especially those of you who have teenagers or young adults who were not teenagers so long ago, you know, I'm curious to know because I wonder and I worry sometimes about being so open about this, you know, we are so far from perfect. I do worry a little bit about you know some backlash, frankly, and some people thinking we're really doing it wrong. So let me know what you think. But be nice about it. All right. Diabetes Connections is brought to you by Dario, we first noticed Dario a couple of years ago at a conference and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now. The Daario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door at a mobile app with a complete view of your day. The plan is tailored for you with coaching when and how you need it. And personalized reports based on your activity, find out more go to my dario.com forward slash Diabetes Connections.   Benny  5:13 Hi, Benny, how are ya? I'm great. How are you?   Benny  5:14 I'm great. How are you?   Stacey Simms  5:16 I'm doing very well. You've been home for three weeks as how are you settling in?   Benny  5:20 Great. I want to go back. I miss my friends.   Stacey Simms  5:23 Yeah, I'm sure. I'm glad you had a good time. So I have a lot of questions for you.   Benny  5:28 From Listen, stop. Hi, listeners,   Stacey Simms  5:33 parents and adults with type one. But first, let me just ask you How was the trip? I mean, I tell everybody how the trip was   Benny  5:40 very, very fine.   Stacey Simms  5:43 And we'll talk more in detail about diabetes stuff. But did it meet your expectations? Like Was it a good time?   Benny  5:49 Honestly, the most fun was when they just kind of let us do whatever in the hotels,   Stacey Simms  5:54 history, religion, majestie, no big shakes, just hanging out your friends.   Benny  5:59 Two days before we went to some banana boating thing. All the counselors were talking about how much fun it is like they all did it. And it's super cool. And it was really boring. Oh, you're the worst.   Stacey Simms  6:11 Alright, so let's talk diabetes stuff.   Benny  6:13 Oh, okay.   Stacey Simms  6:14 Um, we planned a lot of this. We talked to the staff and they knew you because you've been there for a long time. But not all this stuff know me.   Benny  6:21 I had one of the counselors as a counselor at Camp Coleman. Two years back, no, three years back. And then one of the other counselors was in our unit early early.   Stacey Simms  6:35 I guess my point is, you have been to this camp since you were eight years old. So while perhaps the people that were on your bus, you know, the the staff Yeah. familiar, the system, the people that I needed to talk to you understood that this was just you didn't just show up that day, and say, I'd like to hang out with these campers, so they knew who you were. So we did a lot of planning in advance that I can talk about at a different time, because I don't want to get too bogged down in all of that. But let's start with what involved you, which was the packing anything to share. I mean, we just went through and figured out what you needed, and then added half more, we gave you like, 150% of what we thought you needed. had that go for you.   Benny  7:11 I didn't touch 80% of what was medical wise. I mean, there wasn't much need for it all. Like it was nice to have it in case I didn't need it. Most of it was like die hard situation. Like if you're going through the desert for 18 weeks, and then swimming through the negative. What.   Stacey Simms  7:32 I don't know if you can swim through it. But I mean, like knock wood we sent you with, I think two vaccines and one GMO pipe open. So you didn't use any of that. Right? So that kind of stuff. Thank God. Now of course, of course, we sent you with more insulin than you needed normally. And you use a ton less insulin. Yeah. Which we'll talk about. Well, I   Benny  7:51 used most of the vials, right You certainly with   Stacey Simms  7:54 right? But I sent you with pens. Also, you know, I sent even lots of extra stuff. I'm curious and I mean, not to put you on the spot. But why don't you use a nice medical bag? Why won't you let me send you with something that is organized easily? much work the blob of a bag that you use too much work. It's so gross. It's one big compartment.   Benny  8:15 It works. It does its job.   Stacey Simms  8:18 We do break it up with little bags inside. But I gotta tell you, I know it's not me, but I would I would get like a nice medical bag   Benny  8:25 with little find a medical bag, and we can talk about it.   Stacey Simms  8:29 I have like 10 that I would get Oh, you're the biggest pain. Okay, so we'll look for that. Like this thing. No, that's a that's a packing cube.   Benny  8:37 Hmm. That Well, mine is packing you.   Stacey Simms  8:40 Well. Yours is part of a packing cube system. Yes, you have. For those of you who know packing cubes, I enjoy them. I have them all different sizes. Then he uses just one big rectangular bag for your medical supplies that he carries out at home in his backpack. And it's great because it has everything in it. But it's horrible because it has everything in it. I like you should compartmentalize. I   Benny  9:02 already do that. Give me a face in different way.   Stacey Simms  9:04 Yeah. Alright, so then you had everything packed. And you had your medical bag of all your diabetes stuff inside a backpack that I assume you took every year. Okay. Is it a Camelback? Did it have water? I don't remember Oh,   Benny  9:14 so I had a hiking bag right that I threw a Camelback bladder in   Stacey Simms  9:20 Was it easy to get water all the time?   Benny  9:22 Oh yeah. They made sure you had a you weren't allowed off the bus if you didn't have three liters minimum of water would you   Stacey Simms  9:29 perfect What about the the plane ride there that I know it's so long but you know for me not fun for me you got on a plane in Charlotte and you flew by yourself from Charlotte to Newark then you met the group went Newark to Israel and for me once the Dexcom signal disappeared in Charlotte like that was pretty much it cuz you got on the plane oh yeah appeared you had it but I didn't have it that was pretty much it for the day for me cuz I'm not gonna do watch you How so? How was it? You know? Did you do okay? Especially on the plane.   Benny  9:58 I didn't do anything. Special, like at all. When I got to new work, my blood sugar did go low a little bit, but I had food. And then I was fine.   Stacey Simms  10:07 He told you look out for this baggage claim Lowe's, when you get off the plane after you've been on the plane for a while and start walking, it was terribly described with it we're going to be this is going to be one big complaint episode I can tell grievances will be aired.   Benny  10:19 I just like to make it known. I may complain a lot about it. But I loved it.   Stacey Simms  10:23 Thank you for that disclaimer. Because I know you loved it. You read you just like to complain when you get a chance. Yeah. So you get there. I'm not going to I promise I'm not going to go blow by blow the whole trip. But I am curious. That's a very long plane ride. As you said you didn't do anything really special? Did you consider changing basil rates walk around or anything?   Benny  10:43 So the first trip the flight there, I didn't even think about it. And it worked out pretty fine. So on the way back, I didn't touch it.   Stacey Simms  10:51 Alright, well, that's control IQ helping. That really helps a lot. Because in the past, we've, if you've been in the car for three or four hours or a plane ride, you've gone so high, so that's really good. Okay, so we had set up different basal rates in your pump. Yeah, because we assume there would be a lot of activity. So as I recall, we had the regular one, then we had a 15% less insulin and the 30% lessons, and we labeled them. Yeah, 10% less, you switch to that when you got there.   Benny  11:15 The first full day we were there, I switched immediately to the 30%. Less one. And I was Hi, pretty much the entire day. And I did that for about a week. And then I texted you. And I thought the 15% less would be too much. So we made a 20 like 3% one. But eventually, I ended up just switching back to my normal basal rate. And I mean, that was fine.   Stacey Simms  11:40 One of the questions that we got and that I was going to ask you about here is talking about how difficult it was to carb count. Forget the activity for a minute or two. But like with all the foods that you do, yeah, no,   Benny  11:50 it was next to impossible to know exactly how much I just kind of guessed. And sometimes, or at least most of the time, breakfast and lunch, it was next to impossible to know how much I should give myself because I didn't know what kind of activities we were doing. And I didn't know how like extraneous they would be.   Stacey Simms  12:10 Well, they would tell you in the morning, though, wouldn't they what you were doing? I mean, I knew   Benny  12:14 what you were doing. Well, they they tell us the night before, but like it was vague. It was like okay, we're going to go on a hike tomorrow. And that could mean we're going to walk 10 feet up in elevation, up some stairs and then look at a valley or canoeing. We're going to walk through the negative for four days.   Stacey Simms  12:32 I feel like I should have asked you more about like when you were going high when you first got there because you gave yourself 30% less insulin. How did you feel like were you uncomfortable was fine. Yeah, you never feel bad when you're high?   Benny  12:42 Well, I mean, sometimes. Yeah, I know. I know. But yeah, no, I was fine.   Stacey Simms  12:46 But mentally were you? I mean, I I don't even have to ask because you you didn't get stressed out. You never get stressed out because of diabetes. Like Were you worried like no, no, I mean,   Benny  12:59 the only time I was where I was worried about going low during the desert. Yeah, but that was about it.   Stacey Simms  13:05 So tell us about that. What was the desert when you say that? What was that?   Right back to Benny answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar, why we carry emergency glucagon there's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar to Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give the book correctly find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvokeglucagon.com slash risk. Now back to Benny talking about the only time he was really nervous about diabetes on the trip   Benny  14:05 is like the third or fourth day we were there. And they made us pack our bags. We left the hotel. We put our big bag with money with the majority of our clothes under the bus and we didn't see that for three days. We had a medium sized like duffel bag, which had clothes for the next few days. And then we had our you know our backpack. So the bus would drive our medium bag to the next camping spot. We'd unload that and we'd carry our our normal bags with us. About 20 minutes into the first hike. I immediately went low. So the medic that was with us, like prepared. You know I talked to her. She was great. She had like four like hand sized bottles of like squeeze honey, and I downed like half a one like 20 minutes into the trip. That was pretty much the hardest, battling Those lows was the hardest, like the most difficult thing I had with that diabetes pretty much the entire trip.   Stacey Simms  15:05 What was the medics reaction? Was she just met? Oh,   Benny  15:07 no, she cool. She was, um, she was a medic in the IDF. She had worked with kids with diabetes before she'd been on the trip. And she was fine about it. So   Stacey Simms  15:15 she didn't make you feel weird now. Okay. How was the honey? It's pretty good.   Benny  15:20 You know, eventually, I just got to the point because I mean, it was a constant battle for the entire trip. Make sure it Angola eventually just got to the point where I just like, tapped her on the shoulder and she'd be like, okay,   Stacey Simms  15:31 and that was three days. Yeah. Okay. So that was probably the hardest part. Yeah, I miss those three days.   Benny  15:36 It didn't help that we were grotesquely underfed.   Stacey Simms  15:40 Okay, complain away. Hit me with the breakfast so late   Benny  15:43 for lunch and dinner. We're fine everyday. I still don't understand why. But breakfast, you know, we'd like in the early hours of the morning 530 to 11. breakfast every day was a cup of tea and a single cookie. And I will never understand it. We'd hike, you know, and then at 11 we'd sit down and have lunch. And then we wouldn't do anything until dinner. And I don't understand why lunch and dinner were so big. If we're not doing anything. Did you ever put anything in your bag?   Stacey Simms  16:11 Like for the next morning was? Yeah,   Benny  16:12 well, so my friend Nathan had these like, you know, those like gels that bikers use on there. Yeah, he had a bunch of those. So I stole a couple. They had like 100 milligrams of caffeine in them to be perfect. But you   Stacey Simms  16:23 never put like a pita in your bag for the next day. No,   Benny  16:26 gingers weren't like, stuff we could take with us. I'm just kidding. And then they were like, I mean, it wasn't like we were literally in the middle of the desert with no way. Yeah, we had to walk or we wouldn't be able to get out. There was always you know, bus was always a 20 minute drive away.   Stacey Simms  16:40 What food Did you like the best shwarma   Benny  16:44 shwarma in a pizza with hummus. There was some spice, we can never figure out what it was. It looked like a red chili sauce. But they always just pointed at it and said you want spicy. You know that when you know lettuce, pickle, blah, blah, blah, whatever. Every time, every lunch.   Stacey Simms  17:02 That was yummy. So good. I would assume that after a month of eating pretty much the same thing. You figured out how to dose for food if not for the activity. Yeah,   Benny  17:09 after a while, we stopped doing, you know, like intense, hard activity. So I kind of had to readjust again, because it was like in the middle. It was you know, it was hot. And we'd walk a lot, but it wasn't like, hard. You know, like, I'm gonna die. It's 106 out.   Stacey Simms  17:28 So everybody wanted to know what surprised you about the trip or about the trip about diabetes, whatever that means to you.   Benny  17:33 Um, how bad the plane food was,   Stacey Simms  17:36 oh, plane food has a reputation of being delicious. I can't I mean, why would that surprise you?   Benny  17:41 I've never had like, a long in a flight. But yeah, but you ate it? I didn't on the way back. Oh,   Stacey Simms  17:48 that's what surprised you. Yeah. I'll tell you what, surprise me. Oh, okay.   Benny  17:55 So closer to the end of the trip, they took us around to a bunch of different kinds of people. We met Orthodox Jews, a Palestinian, a druid drude, we met someone who just lives in Israel, you know, doesn't believe in anything. And we got other perspectives on everything. And just the way, you know, as a complete outsider, in the way they all see everything is just so different in the way that they saw things compared to each other. I mean, I had never taken into, like thought how different people could see the same thing.   Stacey Simms  18:31 That's really interesting. That's great. What surprised me the most was that you didn't have one instance while you were there. And this is all about diabetes, for me of the kind of thing where every once in a while, you'll forget to put your pump back on, or you will have a site crash out and you won't change it or just something happens where every once in a while you are 400 you know, for three hours, and I'm like, what's going on? You're like I fixed it, I rage bullets and all that stuff. And I was sure that that was going to happen a lot. It didn't happen once. It didn't have only one high, you went low, but it didn't happen once. And I gotta tell you, I'm so proud of you. And maybe that sounds like a low You're welcome. Maybe it sounds like a low bar as you listen. But you send a 16 year old off by himself, right? Nobody was. And to be clear, no one was checking you every night. Nobody was right, nudging you. So   Benny  19:17 Yoni, I love him. He's my favorite person of all time. I love you. And I know you're not listening. He was the counselor that we decided would check in on me make sure I'm not dying. Because he was in my cabin. A couple years ago, the counselors would come around and do room checks, make sure everyone's in their room. And he'd always you know, he's like many of you dead. That's what he'd say, you know, I'm good. And but you know, we both met you know, we both knew he meant like, is your blood sugar? Good. You know, you're dying. Yeah. And every once in a while, maybe once a month, once a week. I get a false low in the middle of the night because I'd be sleeping on my Dexcom my Dexcom was super sensitive to compression lows. Ya know, cuz   Stacey Simms  20:01 I got those low alerts to   Benny  20:02 every low in the middle of the night, besides one or two of them were compression lows. And it was crazy. But he was following you. Yeah. So so that's where I was going with that he'd text me in the middle of the night, you know, like 1am 2am. And he'd be like, Do you need help? because he'd wake up to it. Sure.   Stacey Simms  20:20 I shouldn't laugh. That's   Benny  20:21 fantastic. And don't get me wrong. I was funny. Yeah, I was fine. And then in the morning, every day, I'd have to go up and like, hug him and say, I'm sorry for waking him up.   Stacey Simms  20:29 But that was really cool. And I probably should have mentioned that already that we did. That was part of our protocol. And then on the other side of things, we decided I would follow, I turned off all my alarms except urgent, low. And the idea was, well, what am I going to do? If he's 50? Right. And I'm in Charlotte, and you're in Tel Aviv. So what we decided was, I would not text you right away, I would wait like 20 minutes or something. And then I would text you if I couldn't get you over text only. And I would text a D, a D. And I think in my head, then I was like, then I'll text the people in New York. And then I'll text the embassy. Like, I had this plan in my software. Forgive me, I was so nervous. But it never got to that point, because let me just give you some credit. The two times there was urgent lows that came in, but they resolved or I could tell that they were fake. They resolved very quickly. There were two times when I texted you and you texted me right back. And that was I don't know if you know how great that was. That helped me so much that you just said it's wrong. I'm fine. It was great. So thank you.   Benny  21:29 We had three Israelis on our bus as counselors. And when then we had two Americans from Camp Coleman. One Israeli was like the main guy, he was our tour guide. I mean, he was also a counselor, but he was he was like the unit head of the bus. But the other Israeli shy. Me Yoni and Shai would went outside on like the third day and your neighbors like just in case I'm not there, I want you to show her how to awake you. So I showed her the hypo pen and the vaccine me showed her how to use it. And I told her on my pump, if the numbers red, use those if it is yellow, do not use those. I don't use them both. Oh, yeah. You know, I talked to one of the others. But like if the number is yellow, do not use those color hospital. Use the thing den call hospital. Every time we moved hotels, we'd get a new room with new people. So every night on the first night, I'd tell them you know where the type of pen in the back seam er, I tell them how to use it. And I'd tell them not to use it. Unless you couldn't get hold of Yoni. Yeah, or shy. If anything happens. Look at the number call Yoni. If you can't get ahold of Yoni calls, you know, keep going up the food chain until you can.   Stacey Simms  22:41 How did they react? Did anybody you seem nervous?   Benny  22:43 Everyone was like, Don't die. You know? Like, if I have to use this, I'm gonna kill you. Everyone's super chill.   Stacey Simms  22:49 Alright, I'm confused though. Red and yellow numbers because I don't want   Benny  22:52 so on the pump. If your blood sugar's low, the number like we're, like tells you the actual number. It's red. And if you're high, it's yellow. Oh, so   Stacey Simms  23:01 you were saying don't give you the vaccine and the hypopyon if you're hot. Yeah, I thought you were saying like, give it faster. You're telling the story.   Benny  23:07 Okay, that was it. Yeah, if if you look on the T slim, it's yelling at me right here. My blood sugar is totally 120 right now. Perfect. I thought you ate before the interview, please. But yeah, I told them on the right side of the screen. There's a number typically with an arrow. If that number is yellow, and you give the hypo pan or the vaccine between me that is very bad.   Stacey Simms  23:32 gone, it's gone. It's gone. Okay, that's why you needed to go to the hospital. Now I get it. I just you can tell I'm very involved parents that I look at all the time. And I know the numbers. You know, you got the T slim right when I stopped looking at stuff. And as a started to stop looking started to stop. But I mean, you were 12 because we're up for renewal. Now you're 12. And that's like, exactly the time when I'm not going to start looking in your pants. Right?   Benny  23:59 Sorry, that was a weird way to word that.   Stacey Simms  24:01 But you know what I mean? Like, I'm not gonna go in your pocket in your pocket. And you do it yourself when you were a little like kind of like give me your pump? Or let me see, you know, or with the animals that we had the remote so it was a lot easier. But yeah, so I don't I'm familiar with the T slim but it's not like you had animals for 10 years and I could like fly through that pump. The TCM I have to put my glasses so   Benny  24:19 funny, because I can fly through this. But it's so funny watching her dad tried to do it once. bless his heart. Oh my god, it was painful.   Stacey Simms  24:32 One of the other things that I was worried about was when you were going in the Dead Sea or doing some of the swimming because not only is the Dead Sea super salty, some of the other places are salty too. But it's so salty. We've been told you have to protect your Dexcom transmitter. I know everything worked out. Did you cover it?   Benny  24:47 I did. And then it fell off in the Dead Sea. The transmitter. No the cover. Oh, so we went in the middle of summer. The water was almost boiling. You're come we're complaining It Like It wasn't unbearable. We all went in for like 10 seconds to see if we could flow and then we ran out when we went Yeah, it was great. I know what it was warm say nice things. Did I not put a disclaimer? I loved the trip, but there was a lot to complain about. So   Stacey Simms  25:17 the band aid thingy cover fell off.   Benny  25:19 Yeah, we had one of the clear, you know, the clear one,   Unknown Speaker  25:21 we got a waterproof check agenda. Yeah.   Benny  25:23 So we got in and it started to peel off. And then I got out and got back in for a second. And it came off. And you know, my Dexcom was fine. Okay, good. That's good.   Stacey Simms  25:33 I guess you could have floated by you would have seen it. Haha. Okay, come off. I did see it. But I'm glad so it did hit the salt a little bit kept working. Alright, that's good to know. Did you wear anything on your feet? Remember, I told you you should bring shoes.   Benny  25:45 So remember those like $20 rubber shoes? I got? Yeah. Those broke on the trip to Israel, like in my backpack. So well. So one of them broke. So I had one on my left foot. And then the one on my right. I was like holding on to with my toes. Yeah. And eventually it just kind of let it go.   Stacey Simms  26:05 But at the Dead Sea, they were able to wear anything on your feet. Yeah, that those good because that stuff hurts.   Benny  26:11 Well, I took them off eventually. Because Yeah, whatever.   Stacey Simms  26:14 Oh, to be on. Alright, so let's talk about diabetes tech and gear and everything. You didn't seem to me like you had any issues we gave you. I said 150% of supplies. I think I gave you 300% of Dexcom and inset so I probably lied. Yeah, so you didn't run out? You didn't have any troubles. It didn't look like you lost anything. Really. I remember texting you at one point. I remember why we were texting. But you said something like, I think I was pretending to joke but really telling you like, hey, make sure you change your insert because I was trying to stay away and not do it. Then I was trying to do like that mom thing where you joke what you're really you know? And you said I just changed because it fell off in the ocean. So did you have an issue with stuff coming off in the water? Or Okay,   Benny  26:57 well, we were only in the water twice.   Stacey Simms  26:59 Oh, there you go. Did you change your inset every three days? Like I didn't.   Benny  27:04 It was either until it stopped working or it fell. I   Stacey Simms  27:06 hate that you do that? Come on, man. Well, my skin heals fast enough for it. So Alright, this is the point in the podcast where I give the disclaimer again that Vinnie has had diabetes for a very long time. He knows what he's doing. We wish certain things   Benny  27:22 worse diabetes mom, but at   Stacey Simms  27:23 some point, I have to kind of let him make some mistakes. And I can only yell at him when he's home. So I'm glad you changed it when you needed to. I can tell by your numbers that you know everything was okay. I will tell you that my biggest fear was not an emergency, although obviously that's very fearful to think about because I knew you had a medic, I knew Israel has good health care, you know, wasn't worried about that kind of stuff. I mean, I was worried that diabetes would slow you down and make you feel different give you problems that your friends wouldn't have. He's smiling. You feel different? Yes, I   Benny  27:54 did. You really Of course. That's what I worry about the most. I thought we got over that face.   Stacey Simms  27:58 You got over it a long time ago. But I worry still that like what I mean by that is by slow you down is you'd be on a hike and you would go low and they'd have to stop and everybody else would go ahead. And then you'd be like with the staff catching up and feeling bad, you know? Or you'd be on a camel, you got to write it down. It's   Benny  28:16 so much fun and so disappointing at the same time.   Stacey Simms  28:19 Are you tell the story then I'll tell you my fear.   Benny  28:21 They hyped us up for this camera ride for a full week. We got on the camels walked two minutes in the direction we were supposed to be heading and then walked back. They made it sound like we were gonna like full day through the desert on the camel. You say   Stacey Simms  28:35 you're gonna adopt a camel and bring it home? Yes, I have never been on a camel. So that's two minutes more than me.   Benny  28:41 Did you know that camel milk is actually designated as a superfood because it has all the vital nutrients.   Stacey Simms  28:47 I just read somewhere. And I'm not putting it in my newscast because it looks like garbage to me that camel milk cures type two diabetes?   Benny  28:54 Because that's real. Yeah, since but I just read that this.   Stacey Simms  28:59 Yeah, this is super food though, right? It's supposed to be really nutritious.   Benny  29:02 It has all the essential nutrients.   Stacey Simms  29:04 Oh, fabulous. But my fear would be that you'd be on the camel, you'd be low. You'd feel lousy, you'd have to get off, right? you'd miss out things. And your friends would be like, Oh, well, you're slowing us down. You know, he's laughing at me. But that's the kind of stuff I worry about that more. Because you're smart enough. The one thing that I really think we've we've really taught you well is that when you need help you ask for it. You don't let things go, right. You're not going to be in pain or feel uncomfortable and not tell somebody and with diabetes. I think that's really, really important. So I know you laugh at me, but I worry about the feeling different, even though you're pretty cool about   Benny  29:42 Well, I mean, I don't worry about that. But it's also the fact that I don't hang around people that would dislike me for something I can't control. I don't interact with those kind of people. You know, if we all had to stop which, you know, we we almost never had to stop for me. I mean, I could I could keep going and drink coffee at the same time. But we stopped a lot anyway, just because everyone got tired. You know, if we stopped because of me, everyone would be like, Oh, thank god we're stopping. With the I don't know, can I? No, no. What the heck, Benny? Thank you.   Stacey Simms  30:14 Alright, so here's a question from my friend Steven, who says at this camp, how often did you think about diabetes, versus how often you thought about diabetes at diabetes camp. It's been a while since you've been to diabetes camp. But   Benny  30:26 diabetes camp, in my opinion, made diabetes feel like a disability, more than anything I've experienced,   Stacey Simms  30:33 will actually tell me more about that.   Benny  30:35 Every time we were doing something, they were like, I don't know how to explain it. It's just everything was centered around it, you know, and someone did their inset for the first time by themselves. But you know, good for you pat on the back, the entire cafeteria would clap for them. Like, while you just conquered cancer. Like, I mean, I don't mean to compare it to that. But like, it's, from my opinion, it's like, they were like, the mindset of the staff was like, you know, even if they did have diabetes, his mindset was like, these kids have the worst life in the world. And I need to try and make it better for a week.   Stacey Simms  31:12 Interesting. Because when you were little when you were seven, or eight, and you did your inset for yourself for the first time, didn't they applaud you didn't that feel good at the time at the time, but like, I look back on it, and it's like, okay, you clap for me, that didn't change my life. If you clap for me, and my pancreas started working again. I think that that's, I'm going to kind of keep this as a time capsule thing, because I think that your perspective may change as you get older, but I think very valid. Right. And you're 16. But I think diabetes camp. I will, we'll agree to disagree. I think it prepared you for camp.   Benny  31:47 It might have but   Stacey Simms  31:49 so back to the question, if you think you can answer it. Did you think about diabetes more or less, less, significantly   Benny  31:55 less, just because everything at diabetes camp was centered around diabetes, and everything was like, Alright, check your blood sugar. Now, I can check my blood sugar when I need to. I don't need someone five years older than me to tell me that I need to check my blood sugar. And that something I've been doing for 10 years is wrong. Because they think it's wrong. You know, they wouldn't let me use my Dexcom as my number until one of the last years I was there. Yeah. And we had been doing that for four years by that.   Stacey Simms  32:21 Yeah. So when you're on a trip like this, maybe because you're the only one, somebody like you who's confident, doesn't really feel like they need tons of I don't know supports the right word. But you don't need a lot of attention to diabetes. And other than yourself, you felt like you thought about it less just enough to take care of what you just take care of. Yeah. How do you do that? Do you? I'm curious, just for a little insight into your psychology. Do you wait until you get an alarm? Are you thinking about it when you're eating? Like how does that work?   Benny  32:47 I wait until I get an alarm. It is not on my mind. until something is wrong. Well, you   Stacey Simms  32:52 pull us for food. Please tell me you bolus for food when   Benny  32:54 you eat. Well, yeah. But like, other than that, other than that diabetes 90% of the time. Unless something's wrong with it. It's you know, there's not on my mind, just in the background. Yeah.   Stacey Simms  33:04 I think this interview was good. I'm not sure people will stop listening to me, because you're so great.   Benny  33:08 I don't know. I think every time I'm on the I'm on the show your views go up about Oh, yeah. I can eat the mic again. If No, please   Stacey Simms  33:16 don't. So Stephen went on to say, is there a lesson in the different kinds of attention? Is there a lesson in there for you as you get older? Or do you view diabetes camp at Camp like this as being completely non related?   Benny  33:28 Hmm. Because my chair gonna say   Stacey Simms  33:30 my answer is that diabetes camp, even though you enjoyed it less as you got older diabetes camp, when you were younger, prepares you to be more independent whether you remember it or not, because I remember Benny before diabetes, can't think any after diabetes camp.   Benny  33:42 That's all I'll say. Yeah. You know, looking at it right now. I think I would have done just fine at Coleman without not without kudos. Definitely. Could I think everyone should go to kudos. It is the best thing in the world. That's for little kids. Yeah, it is amazing. I must have changed, if it hasn't changed, and your kids are right now. But CCT and Morris, they're good for kids that aren't, you know, 100% confident in themselves. But I mean, by the time I was like, 910, I had already gotten comfortable with the fact that I had diabetes, and I couldn't change it. So like, be sad about it.   Stacey Simms  34:16 Well, and that leads us to another question that someone had, Sally asked, Do you ever feel it's unfair that you have diabetes? And if so, how do you work through those thoughts?   Benny  34:25 I absolutely think it's unfair. I mean, it sucks. But the way I look at it, it's just, you know, I can't change it. What am I going to do about it? Why be sad about it, and then I move on.   Stacey Simms  34:35 You've always kind of been that way in terms of accepting diabetes. And since I mean, when we're very young, you didn't really understand what's going on. And then once or twice in middle school, you had some real like, I'm really upset about this, but we just talked it through. Do you remember ever kind of feeling differently or have you always you're just such an easygoing?   Benny  34:53 Every once in a while when like two or three insects wouldn't work, and like I had to change my Dexcom my inset and my car. At the same time, I lose my transmitter, you know, every once. Every once in a while, it's like, this sucks. But I mean, that comes around so rarely. There's so very little times when I genuinely can't do something because of diabetes. There are times I can't do things, but not because of diabetes. But I've learned to just what are you gonna do?   Stacey Simms  35:22 I think to the fact that we, I mean, I'll pat myself on the back, I guess a little in that we've never really told you. You couldn't do it. Let you do all these crazy things, even though I'm at home, frankly, wanting to puke. What was I thinking? But we'll let you do it. And hopefully that helps with your attitude. I'm hoping it helps you you know as you get older. It's the worst. All right, we got to start wrapping it up. Now. When you Okay, so you hurt your foot while you were there. You can tell that story if you want to in whatever detail you want to but I'm curious when you got to the doctors in Israel, he kicked your kicked a coral there. So   Benny  35:57 over, you know, a couple events happened I ended up getting a pretty nasty infection on my foot.   Stacey Simms  36:01 When you saw the doctors in Israel. What did they talk to you about diabetes in anybody's feet? Sometimes people get the wrong idea and freak out.   Benny  36:09 So I don't really know what the healthcare system is. Because everyone spoke Hebrew. I just kind of went along with it. I was shy. Um, so she was translating. Yeah. Well, she just told me Okay, we're gonna do this now. I mean, I felt perfectly safe,   Stacey Simms  36:22 I'm sure. But she speaks Hebrew and English. Yeah.   Benny  36:25 So we get into the clinic. We go to the front desk, we tell them what's wrong. They said, Okay, wait here. She told me this process normally takes about four or five hours. We were done in like, 45. That's great. We go in to the room. We sit there for maybe a minute waiting for the doctor. He comes in. He takes like two looks at my foot. He like touches it for a second. He's like, does it hurt? And I'm like, sometimes he's like, yeah, it's just really bad infection. So he gave me a prescription for antibiotics and antibacterial cream. And then we went to the pharmacy and got him.   Stacey Simms  36:55 So there wasn't a lot of discussion about him diabetes, nobody   Benny  36:57 asked No. I mean, it wasn't even a thought.   Stacey Simms  37:00 All right. Well, I like that. I don't like that. I mean, obviously, you can take antibiotics. It's not a big deal. But you know, it makes me a little nervous.   Benny  37:07 If I was concerned.   Stacey Simms  37:09 I know. I know. And then the opposite spectrum is they go they fuss over feet too much because they might go Have   Benny  37:15 you ever told the river told the story about Yes, Simon will tell it again real quick.   Stacey Simms  37:19 Can I tell ya, basically, about two or three years ago, at the end of camp, Vinny had a large blister on his foot and went to the infirmary to get a band aid for it. And they sat him down, they soaked the foot they called me they made me promise to bring them to the endocrinologist. They were very concerned with his footwear. They wanted special diabetes socks. Now listen, as you listen, if you're newer to diabetes, neuropathy and feed can be a big issue. If you've had elevated blood sugars for years. It's not going to happen at a 14 year old type one with Goodyear one sees what happened was I finally and I yelled at them, Benny. And if you heard, but I got on the phone. I said, Give me Benny and he got on the phone and I said, are they scaring you? Like did they make you think there's something wrong with your feet like? And he was like, Mom, it's fine. It's fine. I was just terrified. They were gonna put thoughts in your head that didn't belong there. And then I wasn't gonna bring you to the endo, because we didn't need to. But finally, when I saw him, we told him the story. And he was like, should I examine your feet? And he was like, No, it's fine. All right, it was great. He was like, Okay, are you good? You're good.   Benny  38:18 I think the funniest part of it all was, so there's one nurse there every year that's only there for the first few weeks, which is a shame. She is the best. She knows that I know what I'm doing. And trust me, right? So at the nurse's office at the camp, there's the front desk, and then there's a closet in the back with all the meds. I just kind of go to bed and get ready. But you know, most of the other nurses are like, Oh my god, what's wrong? You okay?   Stacey Simms  38:41 That's Karen, by the way, who you love.   Benny  38:42 I love Karen. So Karen, who had like, was either in the process of leaving or was leaving the next day. And she walked in after everything had happened. You know, she wasn't there yet. And she was like, Benny, what are you doing? That's like, they made me do this.   Stacey Simms  38:59 It was fine. It was all fine. Yeah, no,   Benny  39:01 I'm not mad. I just think it's funny. You   Stacey Simms  39:04 roll with those things very well.   Benny  39:06 Okay, so the camp director of Coleman is leaving, which is very sad. I love Bobby so much. I mean, him I have a pretty good relationship. But here's a video of him going on the zip line over the lake, and he flips upside down. And it is so funny. I will show you later.   Stacey Simms  39:19 Okay. He loves you. I think he appreciated that you took on the challenge of going to regular camp with diabetes, and they've always been very good to us. Um, but start wrapping this up. Are you glad you went with all the   Benny  39:30 work that you had to show? I am so happy I went I'm so happy you guys. Let me go. It was amazing.   Stacey Simms  39:36 What would your advice be to other kids that are looking at programs that are that are difficult like this?   Benny  39:43 Take a job Oh, it is gonna be fine. If you know what you're doing at home. You know what you're doing anywhere. If you trust yourself enough to go out to dinner one night, I think you trust yourself enough to go somewhere without your parents for a couple days. It might not be a month long trip. in a foreign country, it might be to your friend's house for a couple days. But if you think or know, you trust yourself enough to be able to take care of yourself for a couple of days, I think you should go for it. You're always going to have someone with you, or at least you should, that cares about you, and will do things that you need for you.   Stacey Simms  40:19 Right as a minor. Yeah, on these programs is what you mean, right?   Benny  40:22 Yeah. Especially on these programs, there's always going to be at least two or three people that can and will help you with whatever you need. I will be your question for you.   Stacey Simms  40:33 You don't have to answer this. We stress experience confidence, responsibility over perfect numbers. Do you sometimes worry about your health or your numbers? or Why? What Why do you feel good about it? I mean, I think you're doing great. I don't want you to think you're not. But you're a one C is not going to be 5.8.   Benny  40:50 I mean, my thing is, you got to enjoy life. You can't worry about every little thing all the time. If your blood sugar goes high, your blood sugar goes high, darling, give yourself some insulin and go to have some damn ice cream. Sorry,   Stacey Simms  41:05 well, when you're high,   Benny  41:08 but like, if you're 200, and your friends want to go get ice cream, go give yourself some insulin and go get ice cream. Don't say no, because you don't want your number to be perfect. Can I tell them the celery and kid crying in the corner joke you can try. So we have a joke. There are some parents that are really strict with their kids. And those kids eat celery and cry in a corner all day.   Stacey Simms  41:29 And I worry sometimes that the kids eating celery and crying in the corner are going to be healthier long term.   Benny  41:34 So the thing is, you know, they have perfect most kids that are eating celery and crying in the corner have perfect numbers. I don't have perfect numbers. And I'm doing not crying in a corner. I don't think there's or you don't like to watch it. But I mean, it gets the point across you know, unhappy perfect numbers. You know, you might live a full life and have perfect numbers. If you do good for you. You're top 0.1% of diabetics. But there's no point in worrying about being perfect all the time. Because it's unrealistic. And it's not fun.   Stacey Simms  42:06 So the last question here is when you came home, I said it's going to be really hard for me to feel good about nagging you all the time since you just did a month successfully away from me. You're going to be a junior in high school. We're looking ahead to college. So I was joking. And I said I want to try to be here just for customer support. Like you tell me when you need me and I'm here for you. I don't want to be in your face anymore reminding you. It's been three weeks. This has been so hard because you're in my house and now I see everything and I know what's going on. How are we doing on that? Or is this a good situation? This is perfect. Oh God, I was hoping you wouldn't say that. I want to make you more   Benny  42:42 you good. You have done great. You have done wonderful. And if you want to get a bit more naggy you can get a bit more naggy it's not gonna change anything. But   Stacey Simms  42:50 all I want is for you to change that instead every three days. Put it on your calendar. I don't   Benny  42:54 use my calendar, only old people use. It's the worst. But I'll try harder.   Stacey Simms  43:00 Okay, thank you. I appreciate that. Thank you very much for joining me, I appreciate you coming on. I as always, I don't know how much of this I can actually use. We see Dr. vanderwaal. Next week, we go back to the end or next week so you can tell him all about your adventures. In fact, I need to take all the forms with us for Dr. V next week. Because we need your DMP. And you're I'm looking for the forums he's making fun of me looking around because we have a we have a DMP we have your 504 I gotta get all that stuff. My 401k   Benny  43:26 I have one it has $7   Stacey Simms  43:30 you really do from the grocery store. Alright, we'll leave it there. Benny, thank you so much for joining me, I appreciate it. I'm so glad you're home safe. Love you.   Benny  43:39 If your listener count doesn't go up for this episode, I'm suing Stacey Simms  45:24 you're listening to Diabetes Connections with Stacey Simms. Oh, boy, so you tell me good idea to put them on the show? Let me know what you think. And I will link to our other episodes with Benny. And you know, when he was younger, and maybe had some different opinions about things, you can listen to those at Diabetes connections.com, click on the episode homepage. I also want to mention, I realized that we left out a question that you may have, which is how did we keep the insulin cool? How did we keep the supplies cool, as you heard Benny talking about, you know, hiking through the desert and swimming in the Dead Sea and all that. And it was very, very hot in Israel at the time that he was there. And so the backpack that he carried with him that had about three to five days of supplies in it, we had the vial the Insulet vial that he carried with him in a frio you know, the pack that you can wet, we've talked about this many times before it keeps insulin at room temperature does not keep it cold. But it was a little free to pack that he could keep his vial in. And we also use a vivi cap. And that was new for us. And that's something that you can only use on pens right now they're working on vials, but that worked out really well. And you take the cap actual cap off your insulin pen, you slide the Vivi cap on it, it's it just looks like a bigger, fatter insulin pen cap. If I'm describing it correctly, I'll put a link in the show notes too. And it's got a little battery in it that you don't have to replace it lasts for a year. And it keeps it room temperature just like a frio. And that was phenomenal as well, because the that pen was really there as a backup and he uses vials, but he'll use an insulin pen as a backup. If he needs to take a shot if he needs to pull the insulin out and stick it in his pump, that kind of thing. And that lasted the entire time. He actually never used the pen which surprised me. He says he actually forgot it was in his bag. So when he came home, we decided to see how well the Vivi cap worked. And we pulled the insulin out of that pen it had been at that point five weeks. So longer than you're supposed to use insulin, FDA people don't listen, we put in his pump. And that backpack had been right through the desert 100 degrees or more with him the entire trip, the Insulet in the pen worked fine. So big thumbs up on 50 cap, I'm not an affiliate, I may they may become advertisers in the future. They are not advertisers. Now there is a promo code, I think flying out there from the episode we did with them, I'll have to check and see if that promo code is still valid, but I don't get a kickback from it. But that product worked really well. But that's how we did it. And the rest of the supplies were kept on the bus or you know, in the hotel, those were kept cool while he was traveling. So he had a separate backpack that he would pull from. So the main supplies for the entire month were kept in one place. The backpack supplies were for three to five days were kept with Benny the entire time. So it was an interesting way to do it if you have longer term travel stories. We've talked to a lot of people who've traveled the world with diabetes, I'd love to hear more. I'm always interested in packing kind of stories, or don't want to tell you about my really low point when he was gone because I had some some very nerve racking moments. But I had one that I want to tell you about for sure. And I was so lucky it happened while I was at the friends for life conference. So I'll tell you about that first Diabetes Connections is brought to you by Dexcom. And one of the most common questions I get is about helping children become more independent. Be careful what you wish for. Those transitional times are tricky. elementary to middle middle to high school. I mean, you know what I'm talking about right? Using the Dexcom makes a big difference for us. And it's not all about sharing follow up. That is helpful. Think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four to five finger sticks at school or for a second grader to just show their care team the number before Jim at one point Benny was up to 10 finger sticks a day and not having to do that makes his management a lot easier for him. It's also a lot easier to spot the trends and use the technology to give your kids more independence. Find out more at Diabetes connections.com and click on the Dexcom logo. So every summer when I send Benny away for four weeks, when I send my daughter away for four weeks, both of my kids went to the same camp they both went away for you know, a month every summer since they were eight or nine I would get the same kind of questions from all of my friends. Don't you miss them? How can you send them away? You know, don't they miss you? Aren't you worried about them? And that are my diabetes friends, I would get lots of different questions right? Like how are you doing that? If the camp is not a diabetes camp, you don't you freak out when you can't follow him because we never use share and follow at camp, all sorts of questions and worries and things like that. So I honestly didn't talk a lot about this Israel trip other than to a few close friends because I knew that being around other moms with type one would be supportive. Like most of Would be great. But I also knew that some of the questions would make me even more nervous than I was. And I was really nervous about this. Letting Benny get on that plane. I didn't even go to the airport. When we dropped him off in Charlotte, my husband had to take him to the airport, because I knew I would just be so so nervous. And I didn't want to make Benny embarrassed or freak out. I mean, he's so calm and cool. But I didn't want to pass that nervousness off to him because I knew he was ready. And I knew he'd be safe. I knew this was a good group of people. But I was freaking out. So I didn't even go to the airport to drop him off. I made it I did. Okay, the first couple days were very, very, very hard. But when I got to friends for life, which was what about two weeks in, I felt great. And people were, you know, we were talking about it, and they were very supportive. But I also felt, I felt really, almost more nervous in a way. And I still don't know exactly what that was all about. But I think part of it was, I had worked out a plan. And I'll be very frank, I had worked this out with my therapist, I've been seeing a therapist for a couple of years, not just for diabetes, but because life is just so freakin stressful anyway, but we had worked out a plan that I thought was really good, I would only check Benny's numbers. And I shared this on an episode a couple weeks ago, I would only check his numbers at times of day that I decided I would check them twice a day, we had turned off all the alarms, except for the urgent low. And I did that I did that October of 2020. That had nothing to do with Israel. That's just in our developmental teenage plan that has worked really well for us. So I only had the urgent low. And I said, I'm only going to check it at these times of day. Well, when I got to friends for life. We were all having like a mom meetup. And everybody threw their phones on the table. And I really should share this picture. It was fabulous. Whatever your kid is, you know, who cares high low out of range in range, whatever. Let's all show at this moment of time where our kids number is. And I didn't do it because it wasn't the time of day to check his number. And I just didn't want to do it. And they were like Liz, that's a great group of moms super supportive. They were laughing everybody was doing it. And finally I was like, Okay, I'm gonna peek. I'm just gonna peek. And wouldn't you know it, he was 78 double arrows down. I didn't get alarmed. Because as I said, All my alarms were off except urgent, low, and I burst into tears. I just all came out at that moment. It was so stressful. It was so much. I'm not sure be dramatic. I mean, you know what I'm talking about. But 78 double arrows down. And I'm 1000s of miles away. And I don't know why it hit me so hard at that moment. Did I feel left out? Because I couldn't just look at my kids number. Did I feel left out because I had taken you know what many would consider a big risk? Did I regret it? I mean, I'm still having processed all those feelings. I'm still working it out. But oh my gosh, did I get hugs? Did I get support? Did I get people who understand? Thank you, Heather. And thank you, Heather, my to Heather. Thank you to everybody who really made me feel okay, and not judged. And of course, a few minutes later, that number turned around, you know, I didn't call him it wasn't part of our agreement. It turned around and he was fine. Now, later that night, you heard Benny and I talked about that one urgent load that I called him because it was like 20 minutes, and I kept going off and it was a compression low. It was fine. And he texted me back right away. That was actually that same night, but much later, it was about 11 or 1130 our time. So you know, he did what he was supposed to do. He communicated with me, but boy was I excited to have my community around me when I needed them the most. Nobody understands like we do. Nobody understands that pit of your stomach feeling. I knew he was safe. I knew he was okay. But still. Oh, diabetes. I'm sure I'll be sharing more about this experience. If not the months, the years to come probably we're still learning a lot from it. I hope to be able to you know, give some wisdom. Maybe some advice about just you're down the block sleep over because of it. interesting note. I can't say we paved the way for anybody. I don't know if I've mentioned this, but he was not the first kid with type one to go on this trip. Kudos to those other parents. I obviously don't know who they are. But knowing that other kids had done it certainly made us feel better. And it made it easier because the program knew that it could be done right. The leadership of the program knew it could be done.   Thanks so much for listening to all of that. I really appreciate it. All right. Thank you as always to my editor John Bukenas from audio editing solutions. Thank you for listening. Our Wednesday, newscasts are growing strong. I'm so happy I decided to do this. It is so much fun. And it's really taken off especially over on YouTube. If you don't catch it on Facebook Live and you want to watch it with captions, the YouTube channel, just Diabetes Connections. And I'll put a link in the show notes to YouTube. Check us out over there. But the newscast is every Wednesday live on Facebook at 430. And then I loaded to YouTube and it comes out as a podcast episode on Fridays as well. And if you're not familiar with that is all the latest headlines for diabetes, all types of diabetes for the past week and I love doing it. That's been a lot of fun. Alright, I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself. Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Any level of exercise can be more challenging when you live with diabetes. When Eoin Costello was diagnosed with type 1 at age 19, he was worried that his love for fitness and sports would have to be put aside. Instead, he found a way to not only stay active but to coach other people with diabetes to do the same. Whatever level of fitness you're looking for, Eoin is all about having fun and making it work. He's also the host of The Insuleoin Podcast. Stacey appears on a recent episode talking about her parenting experience. Also this week, In Tell Me Something Good – type 1 diabetes and space force? Did we just see a big barrier – military service – come down? Link to the article here.  This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription Below:  Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system. This is Diabetes Connections with Stacey Simms. This week exercise with type one can be a challenge. You know there are a lot of variables Eoin Costello was determined to make it work when he was diagnosed and says the key is don't expect perfection.   Eoin Costello  0:41 When I start something new, I'm probably gonna see some highs and I'm probably gonna see some lows. And I think being aware of that, first of all is very important because you're not going to be as frustrated or discouraged when you do inevitably see these highs and lows   Stacey Simms  0:57 Eoin was diagnosed as a young adult. He has his own podcast and we talk about managing different kinds of workouts, treating lows at 3am. And lots more in Tell me something good type 1 diabetes, and space force. Did we just see a big barrier US military service come down? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.   Welcome to another week of the show. Always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son was diagnosed with type one back in 2006, at the age of almost two, and he is now 16. My husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting. And that is how you get this podcast. I am just back from podcast movement, which is a really big podcasting conference. I've gotten to it in years past, but I haven't been in a while it was really fun to catch up just like diabetes conferences, you know, you see all your friends and you do learn stuff. And I was there in a different sort of capacity, not just learning about my own show. But I'm working a little bit with a group called sheep podcasts, which is of course, podcasting for women. And I bring all this up just to say, it was really interesting to see the difference between travel at the beginning of July, which was the first time I really went to any kind of conference or in person gathering that wasn't, you know, immediate family. And in July, we were certainly very cautious. And friends for life, the organization there did a great job at being smart about COVID and doing everything they needed to do. But the difference this time was just the attitude and the feeling because of the Delta variant. You know, it was very interesting. Many more people were masking indoors than in July, many more people were expressing concerns about traveling back and forth. And I don't bring this up to say anything other than it was an interesting observation. You all know as you listen, you know, this is a very educated audience What's going on? I don't have to tell you anything. If you follow me on social media, you might have seen that I was wearing a mask outdoors in downtown Nashville, I was kind of reluctant to go to downtown Nashville at all, but I'd never been there. And I wanted to see all the bridesmaid stuff myself. Because it is like the National Capital now in the US for bachelorette parties. And yes, it lives up to that hype. It was amazing. But I was wearing my mask outdoors. If you followed me on social you saw that. And I haven't done that before but it was crowded and a lot of young people and you know in the US the younger the less likely to be vaccinated. So we took more precautions than we know I say we then me than I normally would have also was so much fun to meet some diabetes friends just as an odd coincidence in Nashville last Wednesday. As you listen children with diabetes, the group that puts on friends for life had a very cool event with mankind, the people behind Afrezza inhaled insulin, and they sponsored a fun time at a go kart track with Conor Daly. He is an IndyCar driver who lives with type one. And he was in town because Nashville had their very first Music City Grand Prix. I will link that up. It was a very cool, very different kind of race. But Connor was very cool himself. He was super engaging with the kids. I will link up some coverage. There was a new story come up some of the local news stations came out and made some videos which was really nice. I got to meet Rachel Mayo, who is a very cool lady who lives in Nashville. And you know, we're we've connected on social media for years. She lives with type one. She works with the JDRF chapter there. And Ernie Prado who's been on the show before he works at NASA. I saw him with friends for life. And he told me if I was going to Nashville, I had to look her up. So Rachel, it was so great to meet you. And maybe next time we will get in the go karts. I don't know. It was really fun though. you know, one of the things I mentioned podcast movement, but one of the things that's really fun about going there is meeting other podcasters you know, we already have fabulous other shows in the diabetes community. There are lots of podcasts and more of them. keep popping up all All the time, I did sort of a swap with this week's guest, but we did it kind of backwards. I taped the interview you're about to hear with Eoin first. And then he interviewed me about a week later. But he has already aired the interview that he did with me. His turnaround time was quicker. So I'll put the link in the show notes to that Eoin Castillo's show is the Insuleoin podcast, it is great. Oh, and you can hear the name in the title there Eoin was diagnosed almost 10 years ago at the age of 19. And he was very active very much to sports at the time. And as you can imagine, very worried about whether he'd be able to continue. It's a bit hard to imagine now. But even 10 years ago, there wasn't the social media there was in the communication we have now in the diabetes community. I mean, it's taken off for sure. But when you think about it, 2011 was still at the very beginning. So there wasn't a lot of information out there for somebody who wants to run marathons or lift weights competitively, you know, that sort of thing. We had a great conversation about how Eoin you know, kind of found his way and he is now helping many, many other people. And he is Yes, he's from Ireland. I think his accent is much nicer than my my New York accent which occasionally comes out I know you hear it here and there. But first Diabetes Connections is brought to you by Gvoke Hypopen. Our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice but a very low blood sugar can be frightening. Which is why I'm so glad there's a different option for emergency glucagon it is Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle. You pull off the red cap and push the yellow end on to bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with via chromosoma or insulinoma. Visit Gvoke glucagon comm slash risk.   Eoin Welcome to the show. It's great to talk to you today.   Eoin Costello  6:59 Thank you, Stacey. Thanks for having me on. I'm actually a longtime listener of the podcast. I was a pleasure. So I appreciate it.   Stacey Simms  7:05 Thank you so much. I was just about to say I really enjoy your podcast. It's kind of funny talking to a fellow podcaster. This will be nice.   Eoin Costello  7:14 Absolutely. At least we were both used to speaking on a mic.   Stacey Simms  7:17 Oh, we see now you set it up. Now we have to like up the game. We really have to be good today. I want to talk about your show and what led you there. But let's just start at your story's beginning. You were diagnosed with type one at at 19. What's going on in your life during that time?   Eoin Costello  7:35 Yeah, so I was kind of transitioning from high school, we just call it regular school in Ireland into college. So I had done a year of like a portfolio course I was actually going to art college for animation. It was around Christmas time. And I had noticed some differences in terms of how I was feeling. Obviously, I was very tired. I had lost about a stone and a half in the space of a month. I was really thirsty all the time. I just didn't have any energy. And I suppose because I was 19. And I was kind of into fitness and train and and keep myself healthy. I had this I had this naive attitude of I'm 19 I'm invincible. How could there be anything wrong with me, therefore, I'll just brush it off to the side. And it was around Christmas time and and in Ireland, we like to go to bars, we like to have a good time around that. Obviously, in France, I was having a few drinks. And if I was tired during the day, I would say it's only because I was out last night or if I was thirsty. It's because I've had a few drinks the previous night. And it wasn't until my parents were kind of quietly concerned. What they had mentioned that I should probably go dEoin to the GP get a blood test and just to see if everything's okay. And I reluctantly agreed because I was kind of saying, Look, I'm fine. I'm fine. I'm fine. There's nothing wrong with me. But I I gave in, because I just wanted to keep my parents happy.   Stacey Simms  8:59 Let me just interrupt you real quick. Just to translate over here. A stone is 14 pounds. So you lost 21 pounds.   Eoin Costello  9:06 Yeah, it flew off me. Right? Yeah. And in a very, very short space of time was about a month, a month and a half. But the thing about it was because you kind of see yourself every day, I didn't notice it as much. And it wasn't until I'd seen a friend who I hadn't seen and maybe six months or so I just bumped into her in the street. And she said to me, You look really different. And I said how would you mean and she goes I don't know you just look different. And she she kind of blurted it out and was embarrassed nearly but from saying it, but it was obviously because I had lost so much weight in such a short space of time. So basically I went down to the GP got a blood test. And a couple days later I got a phone call saying this is all I said it is blood test come back. You have type 1 diabetes, you need to go to the hospital right now. And I went in and my bloods were like six 40 640 so very high. And then that led me to my new life.   Stacey Simms  10:05 Was there any confusion about which type it was? Because sometimes, as a young adult, they don't go type one initially,   Eoin Costello  10:11 no, straightaway, they they had told me it was type one. But I had barely even heard the word diabetes before. I obviously knew that it was a condition that people lived with. But I had no idea of the complexities of it, or just the, the detail that you have to now live your life by. But no, there was no confusion. It was type one straightaway.   Stacey Simms  10:31 And while I'm sure your parents were supportive, but very worried, I heard your brothers gave you an interesting well, while you were in the hospital, is that true?   Eoin Costello  10:40 Yeah, it is true. So I was I was in hospital. I think I stayed there for about three nights while I was on an IV and obviously getting the crash course and diabetes management. And my family, in a good way have a dark sense of humor. We're nice people we like to think what around difficult times like that sometimes it can be nice to try and keep things light hearted. So my two brothers got a cough my brother and or my my dad. And we're obviously informed that Eoin has been diagnosed type 1 diabetes is in hospital. And on their way to the hospital. They picked up bottles of CO sweet jellies, these kinds of things to bring in as a joke. It kind of sounds weird. If you don't if you don't know. It came, it came from a good place.   Stacey Simms  11:30 That's funny. Yeah, I think sometimes dark humor has its place for sure if you know it's coming with love. That's really funny. Exactly, of course. So you're already very involved, as you said in fitness. I assume you played sports all growing up. What were you thinking at the time about what was to come next?   Eoin Costello  11:47 Yeah, there was a lot racing through my mind, obviously. But one of the big things that stood out to me and one of my main concerns was, can I continue to play sport, can I continue to be active, and for my whole life, I, I played a lot of different sports. But at the time, I was playing football, or I was playing soccer at a very high level. And I wanted to continue doing that. And because I didn't know anything about diabetes, I had almost automatically assumed that this would prevent me from being as active or playing sport. So it was obviously a big adjustment in terms of how to manage blood sugar around exercises, as we all know. But as time went on, I kind of quickly realized that look, you can of course, still play sport, you can be active, as long as you're still prioritizing your diabetes health. But the first while I was I was very concerned.   Stacey Simms  12:41 It's interesting, when you were diagnosed, you know, almost 10 years ago. Now, this is a time before a lot of social media. I mean, it's kind of just starting. But I guess what I'm asking is, you have a huge Instagram following, and other social media following and you post advice, and you talk very openly about how to do what you do with type 1 diabetes, I've got to assume that wasn't available for you. When you were diagnosed? How did you figure it out? How did you know what to do?   Eoin Costello  13:07 Very, very good question. It reminds me of when I kind of first got back to college. Because when I was in class, obviously, I had just been recently diagnosed. And as you say, Stacy, there was no social media, there wasn't really any, any sort of community based support groups that I could kind of connect with online and learn from other diabetics. And as we know, it can be very isolating to live with diabetes, because it's sometimes are consuming in your life. So at times, I was thinking I only person in the world left with this thing. And obviously I wasn't, but sometimes you can feel like that because it is so just on your mind all the time I was in college, I remember, some days, I was supposed to be doing work, but I might be behind the computer or laptop, just researching diabetes, because I became obsessed with in a really good way. Because I knew that. Okay, this is a very, very serious condition. It's something that is out of my control. Now I have it, there's nothing I could have done to bring it on. There's nothing I could have done to prevent us. But it's in my best interest now to know as much as possible. And for any diabetic out there, the more that we know, inevitably the easier things can be. I kind of just became obsessed with obsessed with trying to understand how different exercise would affect me how stress would affect me how lack of sleep would affect me, how hydration, different foods, these kinds of things. And it was it was almost like a guilty pleasure. I was just constantly constantly looking at open research and   Stacey Simms  14:42 we're going to talk about what works and I'd love to get some advice for everybody from you know, the very casual athlete to somebody who's really, really more involved in fitness. But I got to ask, did you have any mishaps in the beginning? Did you try anything that you said that's not going to work?   All right back to Eoin answering that question. But first bottom line, you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us a lot with that and that he understands the plan has to change. It's been he gets older, you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in rage percentage within three months reduction of a win see within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario's diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections for more proven results and for information about the plan. Now back to Eoin answering my question about whether he's tried something in his workout or his diet routine that just didn't work.   Eoin Costello  15:59 Thankfully, I didn't have anything dramatic. Thankfully, I highlight. But yeah, of course, there's so much trial and error with diabetes and from throughout throughout the last 10 years, I have just had thousands of highs, maybe not 1000s of lows, hopefully keep them keep them less. But the more that I tried different things, the more that I tried to get out there the more exercise that I did on a test and different foods with different amount of amounts of insulin. There's just so much trial and error. But hopefully, I didn't have anything like decay or I wasn't kind of rushed into hospital board. Well, fingers crossed. Yeah, let's keep let's keep it. So it was more so just the highs and lows as they call them rather than anything too serious. Thankfully,   Stacey Simms  16:47 well, and I'll be I'll be clear on I was thinking more like you ate a banana before a workout. And it was not the right idea or wasn't so much like DK. Okay, I'm not too worried about, you know, that kind of mistake. I was just thinking about something smaller. But that's up to you.   Eoin Costello  17:03 Yeah, of course, there's times where I remember when I, I think it was been a few weeks after I was diagnosed and I was kind of getting back into the gym. But I was also kind of coming into a honeymoon phase quite quickly after I was diagnosed. And I was taught and I was learning to carb count for one unit of insulin for 10 grams carbohydrates. And I remember, I finished the workout in the gym, I went down to the changing room to get changed up shower, and I had a banana. I weighed out the banana. It totaled 50 grams of carbs. So I thought, Okay, perfect. I've waited out I've done everything I'm supposed to do. I took five units of insulin and ate a banana. But I hadn't fully realized the impact of a potential honeymoon phase. So I quite quickly plummeted. And I now have to get two liters orange juice in quite quickly. But I'm just mistakes like that. Just where you think you're on the right track with an insulin dose of carb count or something as diabetes does. It sometimes surprises you?   Stacey Simms  18:06 No doubt. I hate bananas. That's funny. That's why I gave that as an example. I'm not surprised that you had an incident with a banana. No, no, don't. Not one of my favorites. What kind of technology do you use? Do you use a CGM? Do you use an insulin pump?   Eoin Costello  18:24 So I've always used MDI, my mom, Nova rapid and Lantus. But only this year, I've got a Dexcom G6. And as you can imagine, that's completely opened up my eyes to a 24 hour period with my blood sugar rather than just that snapshot in time with a finger prick.   Stacey Simms  18:41 What motivated you What led you to start using a CGM,   Eoin Costello  18:45 it was more so they had become available in Ireland. So thankfully, in Ireland, we are with something called the long term illness scheme. So if you're diagnosed with Type 1 diabetes in Ireland, all of your supplies are covered, which is unbelievable. But only recently they had included the Dexcom G6, so it was actually only offered to me almost a year to today. It's been a game changer. It's just and particularly with exercise, it gives you so much more freedoms or much more confidence when you are to go to the gym or you are to go for a run or whatever it might be. It's so   Stacey Simms  19:19 interesting with exercise because my son who lives with type one has played lots of different sports. And it's always amazing to see those rises in blood sugar that comes not from food, but from exercise and the different types of exercise you have to learn what to leave alone with treat for. Did any of that take you by surprise? Did you see those? I call them adrenaline highs?   Eoin Costello  19:43 Absolutely. Yeah, I suppose what really surprises me and still to the day What surprised me so much is the drastic difference between and this is obviously from my own experience, the drastic difference between heavy weight training and something like a rant So to give you an example, if I was to actually, only this morning, I was in the gym, and I was doing relatively heavy squats. And when I work with heavier weights, my blood sugar skyrockets. So I've now gotten to the stage where more often than not, I will have to pre bolus for a heavy leg workout, because I'm anticipating that big spike. Whereas if I'm to go for a run, I'll know that after, say, 2030 minutes, my blood sugar's are inclined to trend lower. So ideally, I always try and go for a run with little to no insulin on board. That's why I like to run first thing in the morning. And then we're training in terms of weights, depending on what it is. I'm training. Like, if I'm doing heavy squats, I may need to pre bolus as if I'm having a meal, which is strange.   Stacey Simms  20:52 Yeah, yeah. But you have to figure all that out. I mean, it's it's incredible. And I always feel like just when we have one sport figured out, he decides to change. keep you guessing, right. You can't quit baseball. We figured it out. Now. He's done baseball, and basketball, football, a little bit of lacrosse, and now he's really enjoying wrestling. So I think wrestling is going to take us through high school, we are still figuring it out. Because it is you know, practice is super intense with lots of cardio and then sometimes wait on alternate days. And then the meats are just a lot of standing around and then these bursts of energy. So you know, it's   Eoin Costello  21:27 what would Benny's blood sugar? How would it react if he was saved on an intense wrestling session?   Stacey Simms  21:34 Well, the practices are to the point where we have the example, the very first wrestling practice he ever went to he ate 85 uncovered carbs during the two hours, he just liked having to stop No way. It was real. It was unreal. He was he's an active kid. But at the time, this is two and a half years ago. Now. He wasn't as fit as he is. Now to be quite honest with you, he had taken himself on as kind of a project and between eighth grade, and now he's about to be a junior. So two and a half, three years, he's really transformed his body. He's gotten a lot more fit. He's lost weight, he's muscled up. It's been it's been fun to watch, and kind of inspiring as the mom who just like walks the dog and works out a couple times a week. But he's really done well. So that first practice, though, was amazing. So we knew we had to make some changes. So we you know, we adjusted insulin. And as he exercised and became more sensitive, right, he responded better to the insulin, we were able to make a lot of adjustments. So if we knew it was a heavy cardio day, he would change his basal rates going in, in having control like you with Tandem has kind of changed that. But still, if it was a heavier weight day, he actually he kind of wait, no pun intended, he waits out the high, he doesn't like to dose for it too much because he will drop. And then during a meet, he just tried to kind of ride it. But he's 16 on. So sometimes that means ignoring it. To be quite honest with you, I can imagine and just getting through. So as his mom, I'm like, you know, if you just gave yourself a little bit you could He's like, it's fine. It's fine. It's fine. And it's fine. He's doing very well. He's very healthy. Our endocrinologist is pleased. So I can't really criticize him. But I but I'd like to   Eoin Costello  23:23 as mother's ward. Well, I'm sure look, he's he's in fantastic hands, obviously. But it's it's amazing to hear that he has stayed so active. And as you say he changed his body and seeing the difference with even the insulin requirements. Oh, yeah. Amazing.   Stacey Simms  23:37 Yeah, it's been great. So let me get I don't want to talk all let us let me get back to you. Sorry. When you talk to people about diabetes and fitness, and let's be honest, you are you know, fitness seems to be kind of your job. This is something that you are really passionate about. I'll share some videos and some photos if you haven't seen Eoin he's he? Are you a model? You're a fitness model in some ways, right? Terrible question. You're   Eoin Costello  24:03 gonna laugh at regression? Well, yeah, I'm with a model agency in Dublin, but it's not my my full time job.   Stacey Simms  24:09 Okay, so you can imagine how fit he is to have that as even a part time job. So let's start though by talking about people who are moderately active with diabetes, right? They may not they may not expect to be on the cover of, you know, a Fitness magazine, but they want to get in better shape. What kind of advice do you have for somebody who is worried about going low? Or is hearing us talk about these highs and isn't quite sure what to do? Where do you start?   Eoin Costello  24:35 Yeah, absolutely. Good question. And it's, it's something that I always touch on too. I make it quite clear that because I am so into fitness, I would never expect anybody to, you know, go to the gym five or six days a week and go out for runs multiple times a week. It's what I do with what I love. It's not for everybody else. But it's important that as a diabetic, we have some sort of activity in our life. Whether that be Going for a short walk a day, whether that be playing tennis, whether it be going for a swim, anything that you enjoy is the first piece of advice. It's important that if you want to exercise or if you're trying to introduce a new sort of regime or routine into your into your life, it's important that you enjoy it. Because if you do, you're a lot more inclined to continue to do and continue to see the benefits from it. So if somebody is concerned about the highs that I was speaking about, or the lows that I mentioned, what Ron's there is so much trial and error. And it's important that people always remind themselves of when I'm starting something new. And this can be with any aspect of your life. But particularly with diabetes, when I start something new, I'm probably gonna see some highs, and I'm probably gonna see some lows. And I think being aware of that, first of all, is very important, because you're not going to be as frustrated or discouraged when you do inevitably see these highs and lows. But if I was to offer somebody advice, who is trying to start walking or trying to start, say, even a light jog a couple times a week, the first thing is always be prepared for a high or low blood sugar, particularly low blood sugar, because the impacts of a low can obviously affect you quite quickly. So the first thing is always have your low treatment and start small, you don't need to aim to run a marathon quite quickly, you can think, Okay, I'm going to start this week, walk around the block, see how my blood sugar react, I might do to walk around the block, see how my blood sugar reacts to that. So instead of that kind of all or nothing mentality, you really need to ease your way into it. Because when you ease your way into things, you can steadily see any patterns or trends which approach, it might not be the best idea for somebody to say, Okay, I haven't gone to the gym ever before, but I want to start going, therefore, I'm gonna go to the gym six days a week, yeah, it's gonna be very, very, very difficult to understand how your body and how your blood sugar reacts to that. It could be I'm gonna go to the gym one day a week, and I'm gonna see what my blood sugar's like before, I'm gonna see what my blood sugar is like, during, and after. And if you're aware of the trends and patterns, like I said, with your blood sugar, it gives you more confidence over time. And the more confidence you have with your blood sugar, the easier it is to continue to do more.   Stacey Simms  27:27 And then for the people who want to do more, because we have quite a few people who listen to this show who are very much dedicated to fitness activity, athletics, you know, for those high achievers, any tips to kind of stay at that high level or get there,   Eoin Costello  27:43 I think a lot of that would depend on what that specific person's goal is. But if it is, say, to change your body composition, for example, and you really enjoy going to the gym, you like lifting weights, you can see your body changing over time, and you want to continue doing that, because it's it's what you love. Again, it's about enjoying it. But the priority will always be your blood. And I think no matter who you are what you do in terms of your exercise, whether it be intense, or just kind of casual each day, the priority is always blood sugar. Always, always always, for me anyway, that's how I feel about. And I think if you have a good understanding of how you're reacting to these certain things, then again, it gives you the confidence to push further and further and further and further, if that's what you want to do. So, to give another example from from my own experience, since the lockdown in Ireland, the gyms high close now, they're opened back up, thanks, thankfully. But when the gyms closed, I got big into running. And the first few rounds that I went on, it was again, a lot of trial and error, I would see a few lows, I would see my bloods dropping at a certain distance or a certain time. But the more I did it, the more my confidence grew. And then the more you do, you can kind of see yourself setting yourself goals. So I did a running challenge, which was 48 miles over 48 hours. So you'd you'd run for miles, every Yeah. So it was four miles, every four hours for 48 hours. And before I started running, I was thinking arc like could I could I do that, like with my butcher we get in the way is that realistic foot The more that you do, you can kind of see yourself getting closer and closer and closer and closer to doing these things. So if there is somebody who, as you say Stacey is a high achiever, or really enjoys their training, if you have that goal that you want to work towards, you can tweak your training or, or even tweak your diabetes management towards that, if that makes sense.   Stacey Simms  29:50 Yeah, I'm curious though you said you know the blood sugar is your top priority. What do you mean by that? Do you mean staying in range just knowing where it is? You know? When you say your blood sugar is the most important part of your workout, can you just talk a little bit about what you mean by that?   Eoin Costello  30:05 Yeah, of course. So I mean, not even specifically with training just in general, I always went out obsessing about it too much, I always like to prioritize my diabetes health. And for me, that is trying to keep my time and range in range as much as possible. Because I know that if I'm fluctuating high and low, and my time and range isn't where I would like it to be, that can almost immediately affect my quality of life for that for that day. Because I know that my clothes are up and down, not gonna feel the best and gonna feel as if I'm on the backfoot to my blood sugar kind of chasing them. So I always like to be as prepared as possible, so that I can almost look ahead those 2345 hours into a time where I'm working out to see, okay, I've eaten I've eaten this meal, I've taken this insulin. How can I expect that to react when I say I prioritize as I prioritize it, because I know that I won't be in the best form or I won't be able to train as much as I would like, if I'm having difficulties with my blood sugar.   Stacey Simms  31:12 What do you like to use to treat Lowe's Do you have a go to   Eoin Costello  31:16 when I'm disciplined with Lowe's, my go twos are these lift glucose drinks, or else dextrose tablets was easier said than done. When you when you're not having low blood sugar, but it's a whole different story, when you're waking up at 3am with a low blood sugar. And if I wake up at 3am, with a low blood sugar, the kitchen is just raided. And it's I always say I'm like a bear going into a picnic sometimes just can't be stopped.   Stacey Simms  31:44 Let's you know, it's nice to know you're human. I mean, that's that that takes a lot of discipline to just go for the tabs.   Eoin Costello  31:51 It depends on how low I am. If I'm dipping just underneath the time and range, it's easy enough just to stick to the glucose. But if I know I'm going lower, it's game over in terms of the treatment. And I know that then I'm going to inevitably see that kind of rebound. Hi, yeah,   Stacey Simms  32:09 do you have any foods that you really like to indulge in every once in a while   Eoin Costello  32:15 there is chips or crisps? We call them over here. And they're like, we thought they're beautiful things really crunchy. You're making me think about them. They're just these really crunchy salt and vinegar chips, as you call them. And they do these massive bags in Ireland. So I always have a few of them in the house. Just I probably eat them too often. Maybe that's why I train so much.   Stacey Simms  32:42 You know, I did want to ask you about your podcast. I'm curious. You know, I mean, I was in broadcasting. I know why I started my show, gosh, many moons ago. Why did you start your podcast? How did that come about?   Eoin Costello  32:55 I had never planned on us to be honest. And I think when I initially set up an Instagram page two, as you said earlier, Stacey to kind of help give people advice that I might be able to offer or what just experiences from my own life, it was almost like a snowball effect where the more that I shared, I felt as if the more I had to say. And then it almost came from a sort of selfish standpoint because I really wanted to interview other diabetics. And like throughout the past 10 ish years, I've always learned more from other diabetics than I have anybody else. So I felt that having a podcast gave me an opportunity to speak to as many diabetics as I could and to hear from their experiences. So it was to get other people on to share their experiences. And some of the guests that I've had on have been amazing. And I know you're going to be on shortly, which I can't wait for, for as well. I call this the insulin podcast redefining diabetes. I call it that because, well, for two reasons. Number one is I feel that diabetes is so globally well known. Everybody knows that it exists. But it's so widely unknown, and people don't truly understand the the intricacies that you're just a normal day entails. So I call that redefining diabetes, because I want to hopefully redefine what society see diabetes as and also, more importantly, what a diabetic sees that IBS is, it's really important for me that any diabetic out there realizes that look, it's not an ideal situation to be in as we know, it's a difficult condition to live with. What if we can learn to redefine that in our own head and kind of scratch on the surface to see what positives can we take from this, it doesn't have to just be a negative impact on our life. There can be positives from it, and I feel from sharing some of my own experiences and more, I suppose particularly more with the guests. It helps get that point Cross I've had people who've climbed Mount Everest ran across Canada, Chris Rutan, who was a motivational speaker who has obviously been on your podcast too. And I just think it can offer a lot of people value as your podcast those you've, you've been going for years now. And I know there's obviously 1000s of people that get such a massive benefit from this. So I'm hoping that they do too from my podcast.   Stacey Simms  35:23 I'm sure they do. It's a great show. But before I let you go, I'm curious, you know, you want to redefine diabetes. So if you look back at Oakland, 10 years ago, right, in the hospital, your brothers are bringing you soda and candy. And, you know, giving you a hard time, would you say that, at least to yourself, the definition of diabetes that you got that day, that in these 10 years? Since that you, you've redefined that for you?   Eoin Costello  35:51 I would like to think so. Yeah, I think if I was to put myself back in that hospital bed that was that 10 years ago, and to see how far I've come even just in terms of my own management and how I view my own diabetes? Yeah, I think I've redefined it for myself, which I'm proud of, I have to say,   Stacey Simms  36:09 yeah, you shouldn't be It's okay. That's great. Eointhank you so much for joining me, it was a pleasure to talk to you. I'm looking forward to talking to you for your show. I'm always it's a little weird to flip the microphone around and be interviewed. But I'll try to behave myself. Thanks. Great. Thanks so much for joining me today.   Eoin Costello  36:27 Thanks, Stacey. I can I just quickly say, I just want to thank anybody who's listening. I know that anyone who listens to the podcast is obviously looking for value. And I know that your time is an important asset. So I hope you've been able to get something from this episode. And Stacey, I'd like to thank you because this podcast for me personally has has brought me a lot of value. And it's offering people 1000s of people out there huge support and reassurance around their diabetes. So from a type one diabetic. Thank you, and I appreciate you.   Announcer  37:03 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  37:08 For more information about Eoin in my show notes, you can always find out everything at Diabetes, Connections comm if you're listening in the podcast player, it may be a little difficult to see everything. Some of them don't support the links or the transcript I put in you can always come on home to Diabetes connections.com I so appreciate talking to Eoin. It was so kind of him to say what he said there at the end. I never know what to say. But what a nice comment. And I really do appreciate that I do highly recommend his podcast, the insuleion podcast. It's a lot of fun. He's so engaging, as you heard, and it really is terrific. Please check it out. Up next, we're gonna talk about space force. Did you hear about this guy with type one made it in? What does that mean for military service in the US? We'll talk about it. But first Diabetes Connections is brought to you by Dexcom. Dexcom has a diabetes management software called clarity. Do you use this because for a very long time, longer than I'd like to admit, I thought it was just something our endo could see. But it's really helpful. Now I have it on my phone, you can use it on both a desktop or as an app. And it's an easy way to keep track of the big picture. I find I use it a lot when we're adjusting things you know, which felt for a long time like it was non stop at age 16. Any kind of seems to be leveling out on growth and basil rates, at least for now. But clarity really helps us see longer term trends and helps us not you know over react, the overlay reports help put context his glucose levels and patterns. And when you share the reports with your care team, it's easy for them to get a great idea of what's going on and then they can better help. managing diabetes is not easy. But I feel like we have one of the very best CGM systems working for us find out more Diabetes connections.com and click on the Dexcom logo. And an article from Stars and Stripes was making the rounds. This is a military publication. And you may have seen this really interesting. Tanner Johnson was due to graduate from the US Air Force Academy in Colorado. When he was diagnosed with type one. They allowed him to return but they referred him for counseling and they told him this is going to be the end of your military career. But he told the counselor, I want to stay in what if we could demonstrate that I could do it. He was able to get in front of the academy superintendent and talk to him. And apparently that personal meeting made a big difference because the 10 General Richard Clarke reportedly went to bat for Johnson. There's not a lot of detail in the article about the process here. But Johnson was allowed to graduate in 2021 and he was accepted into the space force. If you are not familiar. This is I don't blame you because it's very, very, very new. Us space force is the sixth independent US military service branch. Of course it is tasked with missions and operations. In the space domain, it was signed into law at the end of 2019. And honestly, I know a lot of people think that this is something that former President Donald Trump just kind of made up and put into existence. But the idea has been around since the 50s. And it was seriously considered in the early 80s by Reagan. So I only say that to say, this is part of the US military. I saw a couple of Facebook comments about Tanner Johnson questioning whether this was really a military service assignment for somebody with type 1 diabetes, I believe it is, is it combat? Ready, right? Because Can you be deployed when you have type 1 diabetes is still the question. And that certainly doesn't seem to be something that is being planned for with space for so I obviously have a lot of questions, as I'm sure you all do, as well. So I reached out to the reporter who wrote the story and said, you know, can you connect us I'd really like to talk to Tanner, and she reached back immediately. It was fabulous. I was so grateful for that. Thank you, Karen. And she said, I will ask him, I will reach out but he just started training with space force. And he will need authorization from leadership to talk to you she said quote, they tend to say no. So we'll see what happens. If you know, Tanner Johnson, or you could get me an interview with him. Please reach out. Let me know how to be connected. Because I have a lot of questions as I know you do, too. But what an inspirational story, what a big first step for the US military. We've talked to other people who have been diagnosed while they are already in the military, and they've been able to stay active. But I don't know anybody who was diagnosed during training, who was able to stay in. So we'll keep following this one. But I'm putting this under Tell me something good because man, that's the last big barrier. We've got, you know, airline pilots in last couple of years can be type one now. Military service is the one that we still, you know, after that it'll be astronaut. So I think it's fantastic.  If you have a Tell me something good story, please reach out Stacey at Diabetes connections.com or post in our Facebook group. I ask there periodically. I love sharing good news. Okay, before I let you go, just a reminder, join me on Wednesday, every Wednesday on Facebook Live. I do a very quick five to six minute newscast give you the headlines in diabetes of the last week all types of diabetes, not just type one. And then I turn that around. We make it a podcast episode on Fridays. But if you want to watch that Facebook Live, then it's on YouTube. And I you know I put it all out on social this week. If you're listening as this episode goes live on August 10, the Facebook Live is going to be earlier. I'm still actually making my schedule because Wednesday just is some kind of bananas day. And I have to do the newscast earlier. So watch the Facebook space. It'll probably be three o'clock in the afternoon 330 something like that. It's usually 430 and I am getting a great response. So I'm so glad you all seem to enjoy it. Thank you very much. If you have news tips, send them my way too. And that's it. Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.   Benny  43:11 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Anticipation just keeps growing for the new Omnipod system, still waiting for FDA approval. This week, we talk to Dr. Trang Ly, Senior Vice President & Medical Director at Insulet Corporation. We'll get an in-depth run through of the features of Omnipod 5 with Horizon, what makes it different from the other hybrid closed loops already on the market, and many other questions you all had. Our previous interview with Insulet CEO Shacey Petrovic  This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription Below Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:21 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:26 This week anticipation growing for the new Omnipod 5 system still waiting for FDA approval. Many of the people behind it have waited a long time to knowing the promise of closed loop systems for people with diabetes and their families.   Dr. Trang Ly  0:42 I still remember the very first time the very first patient that I put the system on and, and I was watching that insulin being delivered. And I remember just like hugging the participants, Mom, because we just both knew how incredible this was going to be if, if this could reach masses of people.   Stacey Simms  1:04 That's Dr. Trang Ly, Senior Vice President and medical director at insulin Corporation, we'll get an in depth run through of the features of Omnipod 5 with horizon. What makes it different from the other hybrid closed loops already on the market and many other questions you all sent in. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. You know I'm always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. As you listen to this particular episode couple of things to keep in mind, Omnipod 5 with Horizon the full name of the system we are talking about today is not out yet it is not commercially available as of this taping. This episode is live on August 3 2021. The FDA is still mulling it over. If you are looking for even more information and some of the history of this, it may be worth going back to our first episode about this system that was almost exactly two years ago with the company CEO Shacey Petrovic. And I will link that interview up in the show notes at Diabetes connections.com COVID, really through this submission for a loop with the delays. And I didn't mean upon there with the word loop. But I know there has been frustration in the community. And there's frustration with an Insulet as well. But it really is close. Now, if you are not familiar and I know we have a lot of new listeners who've joined the show more recently. I know some of you have been hearing about this for years. But bear with me for just a moment as I explain it very quickly. You've got your Omnipod pod. That's the thing that holds and infuses the insulin, it's an all in one. It sits on the body, there's no buttons, there's no display, there's nothing to read, you've got your separate handheld controller, the thing with the display on it and the buttons are the touchscreen of how you actually control the pod when it comes to giving insulin for meals or for correction doses, that sort of thing. And for Omnipod five with horizon, you also have the Dexcom G6, the continuous glucose monitor, the pod and the CGM work together to give less or give more insulin to try to keep you in range. Now that is very, very simple. But Dr. Ly will explain it in much better detail. And I will also link up more information as always in the show notes. If you haven't ever seen what this looks like if you're curious, we'll link you up to all of the information. Dr. Trang Ly, my guest is the Senior Vice President and medical director at Insulet. Corporation, she leads their Omnipod five automated insulin delivery system clinical program before her time at Insulet. Dr. Ly was a pediatric endocrinologist in Australia. And toward the end of the interview, we talk about how personally knowing families that will benefit from this system and systems like it, you know what that is like for her. So my interview with Dr. Ly in just a moment, but first Diabetes Connections is brought to you buy Daario health and over the years, I finally managed diabetes better when we're thinking less about all the stuff of diabetes tasks, and that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions on how to succeed get the diabetes management plan that works with you and for you, Dario is published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash diabetes dash connections. Dr. Ly, thank you so much for spending some time with me. My listeners are very excited to get all the information that they can about this. So thanks for being with me today.   Dr. Trang Ly  4:58 Yeah, great to be program. Thanks, Stacey   Stacey Simms  5:01 you got it. Let's start with an overview. I know that most people listening are probably very familiar with what we think Omnipod 5 with horizon will be. But can you start by just giving us an update and taking us through what is in front of the FDA for approval as you and I are speaking today?   Dr. Trang Ly  5:17 Yeah, so happy to do so the Omnipod five system that you're referring to is Omnipod, or Insulet, first automated insulin delivery system. So this system, he has previously known as horizon or the Omnipod, five algorithm on the pod itself. And it talks directly with the ICGM, which is the Dexcom G6 sensor, and also has a separate controller device as well to be able to remotely deliver boluses and stop and start automated mode, the system that some kind of FDA just requires you to wear a pod and a CGM to stay in automated delivery, because the algorithm is on the pod itself. And I think that is the key feature of the Omnipod five system,   Stacey Simms  6:14 a lot to break down there. And we'll get to each of the components. But let's start there with the kind of the brains of the operation being on the pod. What does that mean, in a practical sense when someone is wearing the system that they don't have to worry about it stopping that sort of thing?   Dr. Trang Ly  6:27 Yeah. So the The key difference between previous products is that with our current Omnipod dash and earlier versions of Omnipod, the pod delivers the basil programs and the bolus delivery that the user has initiated. And so insulin is not under automated delivery. But in our future system with Omnipod. Five watch the pod does is that takes the CGM value which you wear on body and so that value directly communicate with the pod itself. And then the system and the algorithm on the pod takes that CGM value and determines how much insulin you need every five minutes. If you're running high, and you need a little bit more influence, the pod will automatically increase insulin delivery. And if you're at your target or dropping low, it will augment insulin delivery, so it might suspend or it might reduce the insulin that you need. That is the key difference between the product that is available today. And the future with Omnipod. Five,   Stacey Simms  7:38 you would still use the PDM or the phone and we'll get to that to give yourself a meal bolus or a correction bolus.   Dr. Trang Ly  7:47 That's right. For those instances where you're about to have a meal. Or if you're running high for whatever reason, like you underestimated carbs earlier, and you want to give a manual bolus, you can do that any time. And you would do that by using the controller device or PDM, to enter in your carbs, and use our bolus calculator to deliver that insulin. So all of those features are very similar to the current production on the pod dash, which again, is very similar to our earlier version. So that's on the pod.   Stacey Simms  8:24 Let's talk about the algorithm a little bit. I know there's a lot that's proprietary here. But I'm curious, we've seen over the last couple of years, Medtronic come out with a you know, an automated device. Tandem has control IQ, I believe my listeners are pretty familiar with the workings of those, what would be the biggest differences between how those systems work and how Omnipod 5 with horizon will work.   Dr. Trang Ly  8:49 I'm very familiar with those algorithms. Because I, you know, in my previous life, I worked very quickly with those systems as they were being developed. And so I say, you know, having been in this role for the last five years and been running the clinical trials. For them, I can tell you that the main difference I'd say would be that our algorithm, you can set the target glucose for whatever time of day. And the range we have is between 110 to 150, in 10 milligram per deciliter increments. And you might have a family where you want to go overnight, you want to run out and 20 because you feel more comfortable at 120 overnight, and then but during the day you want to run at 110 you can set up a profile so that the algorithm augments insulin delivery to your preferred target glucose level. And, you know, we we knew when we were coming to market that we were not going we certainly weren't the first and not the second product market. So we knew that we had to deliver a level of personalization for our users. So we really listened to what people wanted. And people do want that level of personalization and customization. And so we implemented that design feature into our clinical trial to demonstrate that our system performs very safely across those different target glucose level. Until our clinical studies which show we'll get into Dude, what was tested across a very wide range of patients, for initially, we did a beam study, which was for patients aged six to 70 years of age. And then most recently, just a couple weeks ago, we were reported on our preschool age participants who were between two to six years of age, and they see I'm sure you'll appreciate that they're young. glucose control is just very variable, very unpredictable. And, you know, I think strength of our algorithm is that it works very well, even if you, you know, Miss or skip a bolus, occasionally, you know, that algorithm is going to kick in, it's going to deliver, you know, a decent amount of insulin to get you back in range, it's going to happen immediately, but it's calling to do its best to keep you in the range as much as possible. And similar, I'd say to the other systems, especially, I'd say more second generation systems is that we are getting, you know, excellent timing range, especially in the overnight period.   Stacey Simms  11:32 It was I laughed a little when you said preschool, as you know, My son was diagnosed before he was two. And whenever I see studies with little kids that work so well, it's so exciting, because you know, that age group, they can't even tell you when they're feeling weird. They can't stomach my son couldn't even pronounce the word diabetes. So it's a different age group altogether. So I was thrilled to see those results.   Dr. Trang Ly  11:53 I know, well, I have two kids under five right now, and they don't have diabetes. And I have no idea how much they're going to ace or whether or not you know how much activity they're going to do. And I just can't even fathom how challenging it would be to have a child with diabetes. And are they low? Or are they or as I just grumpy? asleep,   Stacey Simms  12:18 I didn't have enough. Oh, my goodness, I should have said this towards the beginning. And I know, I know Dr. Like that, you know, this, we use control IQ. We're very happy with the Tandem, but we're not rooting for any system here. I think that the and I say we I mean me, I it's so exciting to see all of these systems beginning to come to market beginning to really have an impact to have differences in their algorithms so that people can pick and choose exactly what they want. And we're just at the beginning of it. So I am so excited to see the study's going so well, I have a couple of questions about what you've already mentioned, on that target of 110 to 150, just to be crystal clear about it, you're talking about not just putting the pump into say using Tandem, for example, exercise mode or sleep mode, you're seeing in you know, my weekday profile, for example, I know my son plays basketball every day from three to seven so we're going to create a profile that changes his blood glucose target for that period of time, perhaps starting you know, before he plays a little bit and then extending after and that's an actual profile in the pump that you then could change. Okay, perfect. All right, that's really interesting. Is there an Is there a and I hate to use Tandem is word sorry, is there an exercise mode or a sleep mode? Or is it just the user sets it as they want?   Right back to Dr. Ly answering that question. But first Diabetes Connections is brought to you by tchibo hypo pin and you know, low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're gonna pass out there are a lot of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar Jeeva hypo pen, it's the first auto injector to treat very low blood sugar chivo Kibo pen is premixed and are ready to go with no visible needle before Jeeva people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand find out more go to Diabetes connections.com and click on the G book logo g book shouldn't be used in patients with pheochromocytoma or insulinoma visit Jeeva glucagon comm slash risk. Now back to Dr. Ly. Going into more detail about how the Omnipod 5with horizon system works.   Dr. Trang Ly  14:36 Separate but yes, what you describe is exactly how our product works or during the day. It might be that you want your son to run out 110 through the day but maybe between the hours of three and seven you'd run at 140 that is an option. And you can set that up pre programmed so that he doesn't have to remember to do that every day or you can run in what we call a hyper protect mode, which is work similarly to like attempt days or that you you'll be familiar with. So that's more of an ad hoc, oh, I feel like exercising for the next two hours, I'm going to set my program in hyper protect mode. And hyper protect, what the system does is it adjusts your target glucose to 150. And it actually gives you less insulin than your basal insulin. So you're running essentially with less insulin on board than you would normally would during that period. And so we we did a lot of studies to kind of land on that design. And we feel that he does a good job of preventing hyperglycemia for, for people without problems asked afterwards. So it has worked well, because it doesn't, you know, sometimes, when you're preparing for exercise, you might take a snack, and that drives your blood glucose up. And then if you have a really robust algorithm that might kick in and give you a fair amount of insulin. So that's what we were trying to avoid with our design was that not just that the setpoint is elevated, but also that the system can't give too much insulin during that time. So that's sort of our equivalent exercise mode. We don't have anything called sleep mode. But as I said, our set point of 110, you know, once were created will be the lowest available in the United States.   Stacey Simms  16:30 One of the things I've learned recently, and I I feel like I haven't seen this reported very widely, is that, unlike Tandem control IQ, the Omnipod system, the Omnipod, five with horizon, learns the user it changes, it has a little bit of I guess I call it artificial intelligence. Is that correct? And can you walk me through what I'm saying? What I mean by that? Yeah.   Dr. Trang Ly  16:56 Yes, yeah, I think I think you're I'm getting to a really key difference between our, our system and others. So with, with our system, when we, when we were developing it, we wanted to reduce the work that comes with diabetes, as well. And so you know, a lot of the work that comes with that is adjusting those or rate adjusting, you know, all the settings and things like that. And so our system, initially, when you, when you have it out of the box, it does rely on your basal rate to start off, automated insulin delivery. But over time, the system learns through the turtle Gary informed that is delivered by the system. So the system knows about this, and can rely on this information, because it's reliable come through the system to augment insulin delivery. So you might have a small child who only has 10 units of insulin per day. Now system is not going to give too much insulin, based upon the fact that it knows that in the last few days, it's never given more than 10 units a day. And so the safety constraints are personalized for that user. And on the opposite end of the spectrum, know, we have users that use 100 units a day. And in that case, the algorithm knows that it can give a lot more insulin, and this person will tolerate it quite fine. Because you know, when you have insulin is unlikely to make much difference for this person who takes 100 units a day. And so as it accrues that information over time, the algorithm does adapt the ability to know how much insulin it delivers based on that information. So what it means is that, in order to get the results we got, you know, you're not having to tweak basil rates on an hourly basis. Sometimes I've seen, you know, people have different basil rates every hour. And what we're really striving to do here at Insulet is create products that reduce burden for people. And that includes including, you know, optimizing settings, so that people can get, you know, so that everybody can get good glucose control and, and not have to rely on perhaps educators and clinicians at the academic centers who are familiar with these devices to really get those good results.   Stacey Simms  19:38 So I'm just trying to understand the the automatic adjustment that you're talking about there based on the total daily insulin. So if after a few weeks of using Omnipod five with Horizon, a person should expect to not adjust basil rates should like what should they be seeing because if like let's say as someone has six different basil, right When they start on the system, what what's happening? Right? What's going on? Are they Is it like the other systems where it's adjusting every five minutes, it's giving you boluses. If needed you How is the smartness of the of the pump working there?   Dr. Trang Ly  20:12 Yes, if you had six different rates running for 24 hours, initially, the algorithm would take that information and would have bent in front of every every five minutes based upon the inputs that were provided to the system, as well as how your CGM is tracking how much insulin on board, you have all of those things. So at all times, the system makes a influence decision every five minutes. So that occurs, as soon as you put the system into automated mode. That happens all the time. And when people ask me about order corrections, I say, yes, this system automates and make some adjustments every five minutes to drive you towards your target glucose. So corrections are incorporated within the system, we don't consider any difference between basil modulation and what was modulation of insulin is insulin. So every five minutes, you're getting a essentially order correction if you need it. But that works very similarly to, you know, the systems that are currently on the market. And over time, the those six basil programs that you have really not utilized in the system at all beyond that first part. And so if you are running high for whatever reason, and you know, you you tweak other things, but not your basal rate. And so I'd say in in that way, you know, our system is more similar to the Medtronic system. And in that way that the basil rates do not directly inform automated insulin delivery. But things that are still under your control at all times is influence coverage, share your correction factor, target glucose, correct above all those settings that have always been within on the pod, and also very similar across many bolus calculators all stay the same. So you're always going to be sort of always going to be directly in control of all those fat. And so if you're running high, it might might be that you need more corrections over time before your system adjusts to that higher insulin requirement. But   Stacey Simms  22:34 you're in control, oh, wait, target number, but only only down to 110? That's right. Gosh, I have so many questions with the automated systems. I think you mentioned this, but I'm not sure. What about insulin duration, is that something that the user can change? Or is that something that is set,   Dr. Trang Ly  22:50 so there, so the Dow system, the user can change that, and how it manifests itself is that it will inform the duration of insulin action for all those manual boluses that you deliver. So if you're someone who's very sensitive to insulin, and it hangs around for a really long time in your body, and you have a six hour early insulin action, then you can program that until you know your bolus of insulin that you deliver at 6am in the morning, that's going to take till midday before it disappears from the system, as it knows that all of those will still be accounted in the same way with the duration of insulin action that you provide to the system. In terms of the automated insulin delivery, we have the intellects, proprietary duration of insulin delivery, that is the input to the insulin model from which we deliver that insulin that is consistent, and is just one value. And it's the same value and the algorithm that's been tested across the board from in all of our clinical trials. So that does not change, and is within the algorithm that dictates that five minutes away insulin delivery.   Stacey Simms  24:11 To me, that was one of the big surprises of using an automated system. We have, you know, My son is 16. And we started using an automated system when he was what 14. So you're in the middle of those fabulous teenage years, and he's using tons and tons of insulin. And it seemed to me that we needed an insulin duration of like two to three hours. And when they switched it on Tandem. It's it's five, I really fought on that thinking this is going to be a disaster, and it was fine. It worked really well. So it's one of those interesting things once you get an automated system and realize this is my opinion, once you realize how much work you were doing to try to stay in range. It's kind of nice to let that system take over once you trust it. And I would assume that that's what you found in these studies. I mean, you mentioned that people spent more time in range, but let me give you the floor. Take a minute or two to talk about. I've seen the study You know, you've been kind of putting them out with different age groups over the last couple of weeks and months, take a moment to brag about the studies.   Dr. Trang Ly  25:08 Yeah, we're so grateful to the diabetes community who really gave this product life through our clinical studies. So I'm just deeply grateful for every patient and family who took part in it. Because without them, you know, be a product, but it wouldn't be Omnipod. Five. And so it was really a ton of work that we I feel like has been many years in the making. Yeah, we've worked really hard on this algorithm to get it pretty much as good as it could be. And, you know, back in 2019, as we were preparing to do these clinical studies, I really wasn't sure about how our results would stack up. But I have to say that I'm completely blown away by how well our algorithm has performed. So in the talk first about our six to 70 year old age group. So the first lot of results that came out came out in March of this year, we had essentially two groups. So we had the children, which were six to 14 years of age, and then the 14 to 17 years of age, which is the adolescent and adult group. So I was just covered the adult group there. So we saw and time in range improvement to 74% in the adult Group, a once the reduction down to 6.8%. And then very minimal hyperglycemia. If you look at our hypo compared to other published data out there, it's the lowest hypo, which we measured by time under 70, compared to all the other groups. And in terms of the children, there's six to 13.9 years of age group, we got to a timing range of 68%. And this was equivalent to 3.7 hours per day improvement. So really remarkable improvement in timing range. And in terms of a one see improvement, we got that down from 7.7%, down to 6.99%. So really remarkable reduction in a one C. And what's super, super exciting is that just recently at Ada to see or wishes a couple of weeks ago, we showed that in the extension faces after the main three month pivotal study, everyone could continue using it if they chose to. And we saw a further reduction in a one C, which is just incredible. So in both the adults and children, we saw a continued decline in a one C. So just really super exciting to see that, you know, our product continues to be helpful for these patients with diabetes.   Stacey Simms  28:05 Let's talk a little bit about the the setup of the system. You know, when in the very beginning of the interview, I asked you to kind of describe it. And it's Omnipod Dexcom, G6, and then a controller of some kind. Let's talk about the controller. Last I had heard this was going to be the PDM. If needed, the more traditional I guess you'd call it but you'll expLyn it to me or an Android phone. Tell me about the controller in the short term. And then we can talk about what you're planning.   Dr. Trang Ly  28:32 Yeah, that's right. So we will have the controller device. So we have an Insulet provided controller, which our were choosing to use that word over PDM. Because not everyone knows what a PDM is that yes, that controller device, we will always ship with our product. And so you will be able to use that in a locked down device which can only communicate with pods and can't really do much else with it. And but users will have the option to download an app from their from selected android phone to also have that same experience. So it's the exact same app that would be that would exist on the controller. And you would be able to essentially control your parts and replace that controller with the Android app.   Stacey Simms  29:25 I should have said the PDM stands for what personal diabetes manager. That's right. Okay. So that's an antiquated term now, though, so we'll put that aside. But to be clear, so if I have the right Android phone, you're seeing this is not a lockdown Android phone, I can get this the app and I can use my personal phone to control my Omnipod five with horizon system.   Dr. Trang Ly  29:47 Yes, that's right. That's what's currently in front of FDA right now.   Stacey Simms  29:51 Do you know and again, if it's up to them, or you can say I know we're limited sometimes what models or is there a list somewhere?   Dr. Trang Ly  29:57 Yeah, we haven't. I don't think We have indicators or phone models that will be available at any time. But we'll do that soon after launch will list those out that they will be as the first offering selected Android phones.   Stacey Simms  30:14 And I would assume the plan is to eventually go to all types of phones, including apple. That's right. My question for Omnipod is always what I'm about to ask you. But phone control makes it a little bit obsolete. And that is why no button on the pod why not even like a one dose one unit or something on the pod?   Dr. Trang Ly  30:34 I've been asking this, since I've had the podcast. Yeah, I think he just originated with the original design. And I think perhaps, because it really started originally with the idea of children using our device, and having that separate controller to track all the information. I think just at that time, because it was primarily a product for children, we wanted to make sure that infant delivery was always, you know, very intentional, and not unintentional. And so would always to have that remote control potential and and not have any, you know, button on the pod, which could lead to accidental or insulin deliveries, unintended,   Stacey Simms  31:21 or just a couple of laundry list type questions. Dexcom has already announced that they're going to seek FDA approval for the g7. Soon, I would assume that Omnipod will eventually, you know, work with the g7, which should users should be concerned at all about that kind of compatibility?   Dr. Trang Ly  31:38 Yeah, I think eventually, you can expect that, you know, systems that are integrated with G6 Today, we'll be working towards g seven in future. You know, I think the whole idea of interoperability reach was beheaded by the FDA really enables companies to work faster to integrate with future versions of systems. So you know, we we want to be at the leading edge of that innovation. And I think that will come with time. We I don't think we've announced any times or dates regarding that. But it is something that, you know, we fully intend to support.   Stacey Simms  32:17 And this may be another business type question. But everyone who's using Omnipod right now, what's the plan for current customers? We're getting ahead of ourselves, I know the system's not approved. But can people using arrow so dash expect to kind of be seamlessly switched over to Omnipod? Five with horizon?   Dr. Trang Ly  32:35 Yeah, I don't think we have released all the information regarding how we're going to transition our current customers. Yes, I don't think that that is publicly available yet. But we, you know, one thing we do strongly believe in is supporting our current customers. And what we have said is that Omnipod five will be available via the pharmacy channel at price parity kadesh. And so what that means that if you are already receiving cash today that you're going to be in a very good position to have coverage for Omnipod. fi. And but we haven't detailed the information regarding you know, how we're specifically transitioning every single patient at this, at this point,   Stacey Simms  33:25 separately from the pod. tide pool loop is also in front of the FDA, as you and I are speaking, I'm not even quite sure really what to ask you about this doctor, like because I know it's coming from tide pool. But can you share anything about the relationship from Omnipod to Tandem? And how the loop project is going? It's kind of a it's a different animal kind of out there. But I don't want to leave without asking you about it.   Dr. Trang Ly  33:51 Yeah, you just said Omnipod to Tandem, but I'm   Stacey Simms  33:54 so sorry. Yes.   Dr. Trang Ly  33:58 Yes, yeah. Well, that is title program. So it's best that you speak to Howard about that. But it is a program that we support. And and we certainly, you know, believe in interoperability and supporting points for our users. And yes, you're right. I believe the last update is that it is currently under review with FDA wouldn't use the dash parts, or does it use it with Omnipod? Five. So it's, it's not it's not going to be backwards compatible with dash pod   Stacey Simms  34:35 guidance. My next question was, so if Omnipod five with horizon is approved, Omnipod is manufacturing the same pods for both systems. That's right. I know you know, I'm not sure we're supposed to talk about it. But I know you know, because you've spoken to the loopers groups and you speak to people all the time that there's a bunch of people using the older pods, the arrows, pods, I believe for a nod FDA approved system, they're looping with the separate from title loop, they're looping with those pods is only going to keep making those pods once this new system is approved,   Dr. Trang Ly  35:10 we haven't said exactly when we will stop making those pods. But I think the community should expect which and I know that they already do that at some point in time in the near future, we would need to stop making those pods. And that's for a variety of reasons. But as you will know, Stacy, and many of your audience will know, you know, that is much older technology. And you know, we prioritize innovation that is going to work well and be safe for our users. You know, that's partly why we moved to dash to integrate Bluetooth technology. And then which has enabled us with Omnipod, five to talk via Bluetooth to CGM. So that type of safe integration is really important to us in our future offerings of product. And so at some point in time, that will, we will need to start making that and also, you know, that is with all the technology, all the components, and etc. So, once that happens, though, we will let the community know with sufficient time so that people can prepare for alternative methods of therapy. And hopefully that will be Omnipod. Five,   Stacey Simms  36:25 you've been so generous with your time, I just have a couple of more questions. I really appreciate it. One of the questions that was asked in the podcast Facebook group was when approved, how will the training for this go? In other words, with control IQ, I sat down, I took a course I took a quiz. And once I passed it, my doctor had written a prescription. And we got the downloadable, you know, into the pump. And we were off and running did not meet with a diabetes educator or an endocrinologist to learn how to use control IQ. What will the system be for teaching people and getting Omnipod? Five to them?   Dr. Trang Ly  36:58 Yeah, so for people who are already using Omnipod dash, you can expect that the experience will be similar to what you just described for control IQ. So you will not have to meet someone in person in order for you to start that system up. So it will be similar in a training quiz, number of steps. But you can do it all self directed and be often running on Omnipod. Five, or you can choose to speak to someone or meet in person with an educator if you wanted more information about for instance, how the algorithm works or whatever question you had on your mind. But for brand new users who've never used a pump before, then it will there will always be in person training, or virtual training. You know, there's some things that you we still feel that is necessary to cover, you know, basics of pump therapy that will require meeting with their certified trainer to go through. But yes, we're current on the Pog dashes as you can expect the transition to be fairly seamless.   Stacey Simms  38:08 Another question that came up was about insurance coverage, but particularly Medicare. Can you speak to that? Yeah. So   Dr. Trang Ly  38:15 currently, we have Medicare coverage under Part D, which allows for pharmacy coverage of the pod. So we do have that. And they only came in recently in the last I'd say three years or so. So once that came through CMS, we worked with many plans to get Omnipod covered under that peptides for Medicare. So one of the things that, you know, we're working on well, FDA clearances, is still under review, we are working on making sure that we get as many people covered as possible. When Lord, they come. So yeah, it's a major priority for us to make sure that our patients get covered for this product.   Stacey Simms  39:06 You referred back a couple times to your days as a pediatric endocrinologist. How exciting is this for you? You know, the people that use this product, you know, the people that use other automated pumps. Can you speak a little bit just from your personal side about the excitement because you know, this is going to help people?   Dr. Trang Ly  39:25 Yeah, it's just incredibly exciting. And maybe not everyone knows about this. But yes, Stacy, as you mentioned, I am a pediatric endocrinologist. And it's actually about 10 years ago now, but I did my very first study in automated insulin delivery and that was back in Perth in Western Australia. And in that study, we use a Medtronic pump add to Medtronic sensors and a blackberry phone and the algorithm was on a blackberry phone and it was I haven't mentioned this to many people. But those those sensors were, you know, were challenging at times to deliver insulin from. But it was such important studies, in terms of proof of concept to show that, you know, we could augment insulin delivery and, and making that decision every five minutes gets you in better glucose control. And it was really extraordinary. And I still remember the very first time, the very first patient that I put the system on, and, you know, and I was watching that insulin being delivered. And I remember just like hugging the participants, Mom, because, you know, we just both knew how incredible this was going to be if, if this could reach masses of people, it's always been for me, something that will be realized. And, you know, it has been through really great products like control IQ. And you know, soon Omnipod five will be out with a great algorithm. And because we just know that this type of technology is what is going to allow parents to sleep at night and let people be comfortable with their diabetes and be more confident about it so that they can focus their brains on other life decisions and not be so consumed by their diabetes. And so it is really incredible for me to be able to see the results of our algorithm just works so well in such a huge population of patients, even in just in clinical trials today. And I just know that there's going to be incredible impact from this product in future when we launched.   Stacey Simms  41:47 Well, thank you so much for coming on and sharing so much information. We're all excited to see what happens next. And I hope that you are you know, other folks or Insulet will come on and share more information, you know, fingers crossed as the rollout happens. So thanks so much for joining me.   Dr. Trang Ly  42:02 Thank you so much. So happy to be on.   Announcer  42:09 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  42:15 Lots more information at Diabetes connections.com. I know the one question everybody asks that we cannot answer is when will this be available, it will be available when the FDA approves it. And you know, that could come any minute it could come in a few months, you know, we are not privy to that information. But once it is available, it will take a little while to roll out. So Omnipod I'm sure we'll make a lot more information available as we move forward. We'll talk to them again. And we will answer as many questions as possible. Also got a lot of questions about insurers, that's going to depend as well, quite often, insurers will not initially cover new products. I know Omnipod is talking with everybody. But it may take a little bit of time. So we'll circle back on all of that it is difficult to pick and choose the listener questions that I asked but I really try to focus on what I know the person that I'm talking to can answer and I thought Dr. Ly was was really fabulous and spoke to me frankly, for longer than I expected. So I really appreciate her sharing so much information with us. And I hope you found that helpful. All right. Diabetes Connections is brought to you by Dexcom. And I do want to talk for a moment about control IQ. You heard me mention that several times during the interview. That is the Dexcom G6 Tandem pump software integration. When it comes to Benny's numbers, you know, I hardly expect perfection I want I'm happy I'm healthy. I have to say control IQ has exceeded my expectations, Vinny is able to do less checking and bolusing and is spending more time in range. His last couple of Awan C's were his lowest ever and this isn't a teenager, the time when I was really prepared for him to be struggling. His sleep is better to with basil adjustments possible every five minutes, the system is working hard to keep them in range. And that means we hear far fewer Dexcom alerts, which means everybody's sleeping better. I'm really so grateful for this. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Before I let you go, we're actually traveling this week. So the interview with Benny about Israel is coming up and thank you so much for all of the questions that you have sent in. There was a Facebook group posted Diabetes Connections of the group. If you want to chime in and ask me some questions to ask my son who recently got home from one month overseas. He is 16 and he was with a camp group but it was not a diabetes camp. He's home safe and I've done some debriefing with him. It was really interesting. And Gosh, teenage boys. So interesting. I can't wait to share some of his stuff with you. And some things I'm not sure I will share. No I mean we're pretty much an open book but he right he doesn't really handle diabetes exactly the same as I would but home safe and sound and really did very, very well. reminder that on Wednesdays I do in the news live On Facebook on Diabetes Connections, the Facebook page, and that becomes a podcast episode on Fridays I, as I said, I'm traveling, so hopefully technically all will go well, we shall see. But that in the news episode has become a lot of fun, frankly, and people really enjoy that still short, so I'll put that out as well. And then in the weeks to come, I have some great interviews for you. We have interviews about sports and being very active. I have an interview with the folks that have Afrezza that I'm really excited to bring to you. It's been a while since we spoke to them. And of course, that interview with Benny, so lots to come. thank you as always to my editor John Bukenas from audio editing solutions. I thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.   Benny  45:46 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

When Gary Hall Jr was diagnosed with type 1 diabetes in 1999 his doctors told him to give up competitive swiming and drop out of the 2000 Olympics. Instead, he charged ahead and became the first person with T1D to take home an Olympic Gold Medal. Hall won Gold in Sydney in 2000 and again in Athens in 2004, adding to the medals he'd won in 1996 before his diagnosis. Stacey caught up to Gary at this summer's Friends for Life Conference and asked him how he got past what his doctors told him. He also shared what he tells newly diagnosed families today. Plus, Benny is home – after a month abroad.. Stacey has and update on her son's trip to Israel and how they managed his diabetes for that time. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode transcript below:    Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week with the Summer Olympics underway and swimming taking center stage this week, I caught up with gold medalist Gary Hall Jr. The very first person with T1Dto take gold. He talks about what's changed since then.   Gary Hall, Jr  0:40 I rely heavily on the convenience of CGM, I mean being able to see where my levels are trending. In order for me to compete at the Olympic levels and do the necessary training, I was manually testing with finger sticks 20 times a day,   Stacey Simms  0:55 when Gary was diagnosed in 1999. He was told he'd never swim competitively. Again, we talked about how he got past that and what he's telling families today, and Benny is home my son after a month abroad, I have a little bit of an update on how it went. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Ben, he was diagnosed right before he turned two back in 2006. My husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting. That's how you get the podcast. And one of the fun things about going to diabetes conferences is that you don't know who you're going to run into. It turns out that just a few weeks before the postpone to Summer Olympics were to start there was an Olympic gold medal swimmer at the recent friends for life conference. So great to be able to go back in person finally kind of feeling our way through this and hoping that, you know, we'll see what happens for the rest of this year but hoping that we can get back to it. But once I saw that Gary Hall Jr. was speaking to families, attending friends for life for the first time. I knew I had to ask him to be on the show. So he graciously agreed he met me just a few hours later we did this interview in person you will hear me during the interview referred to how far he had to walk and I mean it. This conference center is huge. And I appreciate him basically meeting me at the farthest point from where he was. And you'll also likely hear some background noise or some music. If you are not familiar Gary Hall Jr. represented the United States at swimming in 1996 in 2002 1004, it's really quite a family legacy. His father, his grandfather, and his uncle all competed on the US Olympic swim team. Paul won silver in 96. And then he was diagnosed in 1999. With type one, his doctors told him he would never swim again competitively. But then in 2000 in Sydney, he became the fastest swimmer in the world. He broke his own record in 2004. And by the time he retired from competitive swimming in 2008, he had won 10 Olympic medals, including five gold. In these current Olympics. There is a competitor from the US with type one, Charlotte Drury. She's not a swimmer. She's a trampoline gymnast. And I talked about her during in the news last week, our last episode hoping to have her on the show in the near future. I'm really interested to hear the difference because it's only been what a little bit more than 20 years since Gary Hall Jr. was diagnosed and told no way dropped out of the Olympics, you'll never do it. And Charlotte Drury was diagnosed and three weeks later returned to her full training as she was diagnosed this year, she was diagnosed right before the trials. So it's a completely different world in these 22 years, let's say in between those diagnoses. So I'm really interested to kind of talk to her in the near future hopefully. Alright, so let's get to it. But first Diabetes Connections is brought to you by Gvoke Hypopen. And when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar. And in the case of very low blood sugar, why we carry emergency glucagon there's a new option called Gvoke Hypopen  the first autoinjector to treat very low blood sugar gvoke hypo pen is pre mixed and ready to go with no visible needle. In usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the gvoke logo gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk. Gary, thank you so much for walking the length of the convention center to talk to me today. I appreciate it.   Gary Hall, Jr  4:50 Yeah, I'm getting my steps in today. I feel really good about it. And I'm also having a lot of fun. Awesome. I'm   Stacey Simms  4:56 glad to hear that. You spoke to the first timer. Families this morning people who have are experiencing their first time to friends for life. Why was it important for you to speak to them? What were you talking to them about?   Gary Hall, Jr  5:09 The antiquated expression is shell shocked. Now, I think it's PTSD. But when you go through a diagnosis, it hits your heart, it hits your family members and loved ones really hard. And you have a lot more questions than answers. And desperate is a word that comes to mind when reflecting back on my own diagnosis, what makes this such a great convention, such a great organization, friends for life, and children with diabetes. And everybody that attends, you know, it's that sense of community here that we're not in this alone, that there are others out there living and dealing with this condition in a similar way that understand your struggles. And that's really all we want. In some ways, it's just to be understood, you know, in such an emotional, traumatic time and experience. And so for first timers, many of them are newly diagnosed, or the parent of a newly diagnosed child, it means a lot to me, because I haven't forgotten what it's like, in that short time after a diagnosis and to be able to offer some support and encouragement and hope, hopefully, hope, to those makes me feel really happy.   Stacey Simms  6:34 But when you were diagnosed, there was no one to lead you through it. There is no had been knowing with your experience or the experience you wanted to have. And you've very famously shared, you know, what a difficult time that was and how emotionally low it brought you. I don't want to take you through that whole thing. But I'd be curious to know, where you found inspiration. How did you get through that time when they said sorry, kid, you're done?   Gary Hall, Jr  7:00 Yeah, it took time. It took time, you know, there are stages of grief, and waited my way through that mark. And found, in some ways, fortunate that I was a top level swimmer prior to the diagnosis. Because I had people reaching out to me, this is unusual, that's not the norm. And so I was able to very early connect with jdrf children's Congress, and children with diabetes. I was here in 2005. When this was a new thing.   Stacey Simms  7:40 I'm gonna ask you about that. I heard there with some some swimming some kids. Yeah, it stands in the pool.   Gary Hall, Jr  7:46 You can count on that when it's here at the Coronado Springs Resort. Disneyland world. Yeah, lots of swimming. Lots of smiles. Good memories.   Stacey Simms  7:57 I bet I bet. But I mean, not to dwell on the difficult, but it's wonderful that they reached out to you. Right. And that is, that is an unusual experience. But you still had to find a way to say to yourself, my dream still gonna happen?   Gary Hall, Jr  8:12 Yeah, there was no certainty in that pursuit. I didn't know what was possible. But this is life, right? Like, we don't know what we're capable of, until we put ourselves out there. And I was willing to try and was really fortunate to connect with Dr. Anne Peters and, and has been here in the past and spoken so many people and she's great. She's, I love her. I love hen Peters. She was the inspiration. It only came in the way of Yeah, let's give it a try. You know, is that that was such a departure from these other doctors that I had initially come in contact with that, um, yeah. If you set your mind to something and try to figure it out, you're gonna have some success, eventually. So that's what we've kind of set to work doing. And like I said, there's no certainty that I would be the fastest swimmer in the world one day, but that's what happened.   Stacey Simms  9:20 Yeah. When you look back at that time, and you think about how you manage diabetes Now, what's changed for you?   Gary Hall, Jr  9:29 The game changer in diabetes management was the continuous glucose monitoring device and Dexcom came out with that device just changed with diabetes management, and it was just almost like, how come I I couldn't have had this 20 years earlier? You know, or you know, I guess it wasn't that long when I but 10 years earlier. I rely heavily on the convenience of the sea. gam I mean, being able to see where my levels are trending, in order for me to compete at the Olympic levels and do the necessary training, I was manually testing with finger sticks 20 times a day. And that doesn't even come close to comparing to you know what the Dexcom has to offer? Yeah, that's been the biggest change area. You know, in 2000. I was diagnosed in 99. last century,   Stacey Simms  10:25 turn of the century turn of the century,   Gary Hall, Jr  10:27 you know, the pumps were really just becoming popularized at that time. And I like pumps, a lot of people swear by them and love them. But it was just I never felt connected. That's the first time I've ever used that. Upon I just caught myself. Anyway, I yeah, I just never the attachment. And maybe it was because I was swimming in the water and just wearing a skimpy Speedo or whatever body conscious, I don't know. But I was able to get over that with when the CGM and in the street behind the speedo location.   Stacey Simms  11:05 We get a little personal on this show.   Gary Hall, Jr  11:06 Yeah, so yeah, but the benefits to me were worth a wearable. Yeah, I live with the pump companies were doing but at the time 2000 everybody was, you know, it was parading in the convention halls. You know, the pumpers, you know, is this big movement and game changer, and you know how diabetes managed, but I found after trying all the pump set, you know, I was getting good, you know, range as long as the testing was the key. And as far as long as I was willing to give myself a shot. You know, pen needles are pretty easy to take. So that's just personal preference.   Stacey Simms  11:46 I just want to ask you about the 20 finger sticks a day, because I remember my son went seven years without a CGM. And it was, especially in the pool, this pruney fingers, it's really hard to do finger sticks. Was that an issue for you? I mean, do you have memories of like, oh, not this one. I'll try this finger or I mean, it must have been slipping around on the pool and the wet test strips.   Right back to Gary answering that question. But first, one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's the little tasks all adding up. Are you sick of running into strips? Do you need some direction or encouragement going forward with your diabetes management, with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line to the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my daario.com forward slash diabetes dash connections. Now back to Gary answering my question about what it's like checking your blood sugar while you're swimming.   Gary Hall, Jr  13:00 So yes, drying off properly is very important. There are times where Yeah, there's just a watery blood thing I don't Yeah, it was juggling, you know, and a lot more to carry and a pocket. You know, I like to travel white empty pockets. So now I've got my smartphone and, and a pen. And so I appreciate probably that more than anything because I you know, bulky pockets, slow you down.   Stacey Simms  13:29 And my listeners will definitely want to know, if you have any tips and tricks keeping that Dexcom on in the water. Everybody's got a different method because everybody's skin is different. I'll give you that disclaimer. Any advice or any thing to share?   Gary Hall, Jr  13:41 Yeah, I know. I use duct tape.   Stacey Simms  13:45 I need to just narrate. He looked around almost ashamedly. Yeah, I know.   Gary Hall, Jr  13:53 I'm just hardcore that way. I guess I'm sorry. I kind of like the roughness of it. And so yeah, when I need securing I get that that silver ducted.   Stacey Simms  14:06 I'm almost Sorry, I asked. You're meeting kids here. You're talking to parents. You know, this is a family conference. There are a lot of adults with type one as well. But I remember when my son was first diagnosed, anybody that looked like they were living well, with type one, I would just great. How did you do it? What did you do? You know, what's the key? And I know there's not really an answer for that. But I'm curious what you say, because I'm sure parents have already asked you.   Gary Hall, Jr  14:30 What do you have to do to stay healthy? And?   Stacey Simms  14:34 Well, I think it goes beyond that. I'll change my question. Beyond keeping your blood sugar in control and listening to your mom. Right and doing everything. Yes, always. I'm curious if there's more to it, because for me, I find that my son thrives the best when he is he's allowed to take risks. He knows that we trust him. And even if he messes up, you know, hopefully it's in a safe enough environment. He's 16. Now, just for context, So we're giving him a longer and longer rope. And I think that's important for thriving with diabetes is letting your kids make mistakes, letting yourself make mistakes. I'm curious if anything like that kind of helped you. I mean, you're somebody who had such high goals that had to help you thrive as well,   Gary Hall, Jr  15:16 well, I've got children, my daughter is 15, my son is 13. Now, and they don't have diabetes, knocking on wood, and they're at an age where I remember from my childhood independence as an important thing. And as a parent, you want to protect them in a shelter them, right. And even more, so when your child has diabetes, we have to let them go, they have to leave the nest at some point, and develop that sense of independence. And so that's difficult for a lot of parents here. Especially newly diagnosed, you know, that really have that instinct to protect and shepherd and, and so then there may be some mess ups, you know, and learning curve, and trial and error process, there's air involved, and there certainly was in my learning curve and diabetes management. Eventually, you get through that, and they're able to take some ownership of it. And I think for me, I've always had a fierce sense of independence. And so that was really important for me, not just in my pursuits in the pool, but also in in diabetes management.   Stacey Simms  16:34 Summer Olympics are coming up. What can we look for? Like, can you tell us anything? We should be like watching behind the scenes or stuff we don't know, or, you know, fun stuff about swimming? I mean, you you made such a show of it.   Gary Hall, Jr  16:48 That sport is entertainment. So don't fault me. No, no. I had some fun. That's all I was doing. horsing around, but it for Look out, I went to the Olympic trials for USA Swimming. They were in Omaha, Nebraska just a couple weeks ago, and saw the team qualify. And what an intense meat that is, you know, they take first place and second place, third place goes home, I was able to see some outstanding swims. I'm a fan of the sport. I've been following it closely my entire life and the guy, the next guy, you know, because there's certainly been a lot of merit of, you know, Michael Phelps, his retirement, he's been a pillar of USA Swimming for so long. You know, who's going to replace that pillar. Caleb dressel is the guy. And everybody will know his name after these Olympics. He's really just a phenomenal swimmer and great role model. I expect good things out of him on the women's side. Katie ledecky, she was around in the last Olympics. She is a sweetheart, she's a darling, she's exactly who you want your daughter to grow up to be like, so Team USA is in good hands. There's a lot of swimmers with them, shoulder to shoulder, representing the United States and we can count on them to do a great job and represent us really well.   Stacey Simms  18:10 And then just one last question before I let you go. Kids listening families listening with type one who want to swim, high school level college level, maybe dreaming about the Olympics. Any advice for them? I guess I'll be fishing here a little bit. But feel free to get specific. Obviously, you want them to follow their dreams?   Gary Hall, Jr  18:26 Yeah. Listen, I say it often, you know, you don't have to win an Olympic gold medal to enjoy the benefits of sport. You know that there is social camaraderie, this built in a support system and you're surround yourself with other young ambitious people that have goals and work hard to chase them down. And, you know, this is an exclusive to swimming. Obviously, I'm a little bit biased. I think it's the greatest sport in the world. It is but you know, we'll we'll accept the benefits of other sports in addition to I love sport, I love what it teaches the data. It's overwhelming kids that are involved on us in a sports program on a sports team average, they outperform their classmates by one full grade in the classroom. You know what it does in stress reduction, and overall health benefit is tremendous. You know, if there was a single drug that had the efficacy of exercise and provided the same benefits of exercise, every single doctor in the world would prescribe that. It doesn't have to be swimming doesn't have to be for a gold medal. But go out and have some fun.   Stacey Simms  19:43 Gary, thank you so much for talking to me. You're listening to Diabetes Connections with Stacey Simms. Lots more information about Gary in the show notes at diabetes dad connections.com or wherever you're listening, most podcast players will let you access the notes. But I do put a transcript in now to every episode. And that can get a little bit long. So if you don't like the way it looks in whatever player you're listening to just head on back to Diabetes connections.com and click on the episode homepage. And I'll be honest with you, I don't usually share this kind of stuff, but I kind of wish I prepared a little bit better. I mean, I didn't realize I was talking to Gary until I talked to Gary. Right. I met him there. And he said, Sure, I'll come on. And then we did the interview. And he has so many other things I wish I had asked about he punched a shark. I guess this dude who's in the middle of a shark attack, the shark was attacking his sister, and he punched the shark. I mean, this is a crazy story, his sister's okay. And he's also been very outspoken about doping during the Olympics. I'd like to talk to him again, maybe we'll be able to do an Olympic Roundtable, one of these days with the other athletes who have competed, but he was very gracious to talk to me and to make the schlep all the way down the hallway to where I was, and you're laughing, it probably takes a good 15 minutes to get where I was in the conference center there at the beautiful Coronado Springs Resort at Walt Disney World. That's where they have the friends for life conference every year in July. All right, up next, Benny is home. Many of you know that I haven't really felt like I could breathe for the month that he was overseas. So I'll tell you a little bit about how we handle that. But first Diabetes Connections is brought to you by Dexcom. And when we first started with Dexcom, back in December of 2013, the share and follow apps were not an option. They hadn't come out with the technology yet. So trust me when I say using the share and follow apps makes a big difference. I think it's really important to talk to the person you're following or sharing with get comfortable with how you want everybody to use the system. Even if you're following your young child. These are great conversations to have, what numbers will you text, how long we will need to call that sort of thing. That way the whole system gives everyone real peace of mind. I'll tell you what I absolutely love about Dexcom share, and that's helping Vinnie with any big issues using the data from the whole day and night, not just one moment, internet connectivity is required to access separate Dexcom follow up to learn more, go to Diabetes, Connections comm and click on the Dexcom logo. All right, so Benny is home. As I am taping this episode. He's been home for just two days. Now we grabbed him up from the airport here in Charlotte and hugged him, I did not want to let him go. It was so nice to see him. So just real quick, if you aren't familiar, then he is 16. He's been going to a non diabetes, sleepaway camp for a month since he was nine years old. And it is with this camp, that he just went to Israel. And he was gone for a little bit more than a month. So how did we do it? How did we let him go with a non diabetes crew of people overseas for all that time, I'm going to do an episode hopefully with Benny soon I want to get his take on this. But I'll just give you an overview basically, of what we planned and how it went. So the main thing to know is that Benny has been doing this for a long time when he goes to this camp. As I said, one month since he was nine years old, we do not use share, we don't use Dexcom, I am not a part of his day to day diabetes care. So I think that's the first big thing to know. And also the first big thing that went into really making sure that he knew what he was doing. He's proved time and time again, that he could do this. It's never perfect, I should probably have led with that. We don't expect perfect blood glucose lines and numbers when he's at camp. That's not part of our expectation, which I think helps a lot. And I am used to not really knowing what's going on for an entire month. Now certainly we check in with the medical staff, and especially when he was younger, we would have phone calls. And we did a lot of prep. And we did a lot of prep here. So we made sure that the staff knew what was going on that he had diabetes, that he will be that he will be a little bit more help probably in certain situations that they had to make sure to store things correctly, not just the insulin, but storing all of the extra diabetes supplies. You don't want dex comms and pump and sets. You know, when you're schlepping across the Negev  desert, you really don't want those in your backpack. So where would we keep them that they would stay cool, you know, that kind of thing. We decided to set up several different profiles in his pump, he uses the Tandem x two with control IQ, which was frankly a very big help on this trip. But we set up a few different profiles, the regular profile, a 15%, less insulin profile, any 30% less insulin profile, and we named them that 15% less 30% less, make it really easy for him to adjust as he got there because there were some times when they were incredibly active, you know, lots of hiking, lots of moving around lots of heat. We decided in advance, you know, had a lot of conversations about this that a staff member would follow is Dexcom. I will debrief Benny more about how this actually went. But my understanding is that the counselor who is known for years followed his numbers but only had the urgent low alert on his phone. So you know, he wasn't getting beeps all day long. And that seems to have worked out very well. I also followed I wasn't quite sure that I wanted to like I said, I don't usually follow him when he's away for that month at camp. But we decided in this circumstance, it would be a good idea. But I had to have a plan. So Benny and I talked about what do I do? Right? What am I supposed to do from North Carolina? If he's beeping in Tel Aviv? So we decided that if he was low for a certain amount of time, if he was high for a certain amount of time, I would text Benny. And if I didn't get an answer, then I had a system set up in place where Okay, I would call the counselor who was following him no answer. I would call the counselor and staff who's in Israel, no answer, I would call the staff in New York. And we would go through that I never had a moment during the month where I had to call anybody or text anybody. But Benny, and I only did that, and we'll talk about the episode that we do together. There were a couple of times where he was not low, but it was alerting urgent low for longer than I would have been happy with. So that's why, you know, when he's low for that amount of time, I texted him, he said, it's fine. We resolved it. That's about it. I mean, what other prep did we do? The prep that we've been doing since he was two years old, you know, my philosophy is trying to get him as independent, as confident as I can with diabetes, although I gotta be honest with you, that has come back to bite me because I did not expect him to be this into 16. And I was, frankly, very worried all month, but he did great. He really did. It's a lot to shoulder. It's a lot to shoulder at any age with diabetes, right at any time. But this in particular was a big challenge for him. I'm really proud of him. And I can't wait to hear although if you know, Benny, if you've listened for a long time, I'm also kind of dreading hearing someone. Say, but we'll be honest with you, and we'll share it all. So hopefully, that'll happen in the next month. I'll have him on the show to talk about his trip. But he is home. He did really well. And he's excited to be sleeping in his own bed. Alright, before I let you go, we are traveling a lot in the next couple of weeks, just some family stuff. And I'm going to be at a podcast conference going to Nashville for podcast movement. So I don't think we're going to have any schedule interruptions. I've got it planned out pretty well. But hey, you never know. Please join Diabetes Connections, the group to stay up to date when stuff happens. I post there first, so you will know what's going on. But I think we're smooth sailing in terms of shows. We are talking to the folks from afrezza and I've got an omnipod update lots of information about what's in front of the FDA right now. Man, I hope that stuff gets approved soon, but we shall see. And then we're going to be back to school here. In the end middle of August, middle of August for my daughter goes back to college end of August for Benny and COVID and delta variant permitting. I'm really hoping to get back to some in person activity on the local level on the national level. So fingers crossed, we shall see. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'll be back in a couple of days with in the news. Join me for the top stories in the diabetes community. Until then, be kind to yourself.   Benny  28:00 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jack Tierney has lived with type 1 for more than 60 years. Not surprising, he was first misdiagnosed with type 2 and lived with that diagnosis for almost two years. He shares the story of finally getting the right diagnosis, living well with T1D before home blood sugar meters or fast acting insulins and why he just last year switched to a pump. Stacey talks to Jack and his son Jamie. You can watch the video that brought them to our attention here. In Tell Me Something Good – boy it was great to get back out to an actual in person conference. Shout out to not just FFL but to my local Charlotte community as well. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Previous episodes with people who've lived with type 1 for more than 50 years: Marty Drilling Jeanne Martin Richard Vaughn Judith Ball Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription below:    Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first pre mixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week Jack Tierney is 81 years old and was diagnosed with diabetes more than 60 years ago. He had classic symptoms but remembers being shocked to hear the news.   Jack Tierney  0:38 And he told me I was a diabetic and I said to him what's that I had never heard the word or knew nothing about it. And he told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two because this was January of 1960   Stacey Simms  1:00 Jack was mis diagnosed with Type two for almost two years. He shares the story of finally getting the right diagnosis living well with T1Dbefore home blood sugar meters or fast acting insolence and why he just last year, switch to a pump in Tell me something good boy, it was great to get back out to an actual in person diabetes conference, shout out not just to friends for life, but to my local Charlotte community as well. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. Okay, so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed 14 and a half years ago, just before he turned to my husband lives with type two diabetes. I have diabetes, but I have a background in broadcasting. And that is how you get the podcast. I got an email a couple of weeks ago from Jack Tierney, who you'll hear from today. And he said check out the 12 minute YouTube video that my son and La filmmaker has created for me, it's called an 81 year olds 62 year journey with type 1 diabetes. Well, that caught my attention. I've talked to quite a few people over the years who have lived a very long time with type one, it really is incredible to think about how they made it work without the things that we consider now like the very very basics right home blood sugar meters, and a one c test fast acting insulins, Jack and his son Jamie have a great story. And I will link up that video that started all of this in the show notes you can always go to Diabetes connections.com. If you're listening on a podcast player, you know like apple or Spotify or Pandora, sometimes the show notes are a little wonky. And the links don't work, just head over to the episode homepage. And it also has a transcription. If you follow me on social, you know that I went to the friends for life conference recently the first in person conference for me since March of 2020. I'm going to talk about that after the interview. But I wanted to say a quick Welcome to anybody new who is listening who found me there who I met at that conference, there were so many new people, it was great to be able to say hi and have some hugs and meet your kids. So I'll talk about that a little bit. And I'll get to Jack's story in just a moment. But first Diabetes Connections is brought to you by Dario Health. And, you know, we first noticed Dario a couple of years ago at a conference and very thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports based on your activity. Find out more go to my daario.com forward slash diabetes dash connections. Jack and Jamie, thank you so much for joining me. I am so interested to hear this story. Thanks for making time for me today. Oh, you're welcome. We will hear Jack story and I can't wait to hear you in your own words. But Jimmy, let me just start with you. What made you create that video,   Jamie Tierney  4:19 my dad said he was working on some scripts about his thoughts on diabetes and living with it for over 60 years. He wrote a number of different stories about it and wanted to record that on camera. And so we started doing that and we have all seven or eight sorry, eight tapes, I believe, of doing that. But what I was most interested in is his personal story, his life story because once we got started there was there's a lot of things that I didn't know about his story and about about diabetes in general. And so that's what got me interested and then I wanted to follow up with with his doctor and with his with his brother to get multiple sides and also my mom I'm here to get her side of it. It's one of those things that started off as one thing and changed a little bit as we went.   Stacey Simms  5:06 All right. So Jack, you have lived 62 years with type one. Can you talk about your diagnosis? Because not too surprisingly, you weren't diagnosed correctly right away,   Jack Tierney  5:16 right? Yeah. In the first tape that I did with Jamie, I did talk about what happened with me, I actually came down with type one in 1959. At the time, my mother, who was only 43, had a brain tumor, and I was under a lot of stress, and I was attending college. In fact, when I was home with her after she had to have had a tumor removed, I did get the flu, like so many type ones, it just exacerbated or caused type 1 diabetes, because I weighed 100, I'm six foot four at the time, a weighed 150 pounds, I was down to 125 and peeing incessantly, like everyone who gets type one does. And so I returned to college. What happened was, I was just deteriorating so fast. I was in a small town in Indiana attending college. So I went to the local general practitioner, and he did some tests and told me my blood sugar was over 500 and then needed to be 80 to 120. And he told me, I was a diabetic. And I said to him, what's that I had never heard the word or knew nothing about it. He told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two, because this was January of 1960. And he was a general practitioner in a very small town. But what he did do was consult with the dietician at the college I was attending, and he treated me I now know pretty much like a type two diabetic because he put me on 1000 calorie diet, your I am weighing 125 and surviving on any did give me a pill, I believe it was called diag and Ace, I really survived that way for about 18 months, just living on 1000 calorie diet and and I was in a really rigorous academic program too. But then as my brother indicates on the video, I came home and he was really worried about me. And luckily I had transferred to the University of Dayton and I was, I got in touch with a wonderful Doctor Who put me on insulin shots. And that made all the difference in the world. You know, I did get back to weighing about 150 in about six months, and you know, took the taking shots. In fact, what I say on the video, when I added it all up, I've given myself probably 42,000 shots over the years, by the way, preparing to do the tapes, Jamie because whenever Jamie does film project, he does extensive background for it. And he gave me a book titled breakthrough about the discovery of insulin by Dr. Frederick Banting. And in fact, when I, I'm going to start to cry, because I read that book in two days. Because it just reminded me of how many kids died before Dr. BAMMY who's one of the greatest human beings that ever lived, discovered him. And it just, you know, I just brought back so much to me reading that book. But the man was a absolute saint for all that he did. I'm sorry for crying. But every time I think of that, man, I just think all of us were type ones are eternally grateful to him back, he's got to have one of the highest places and heaven.   Stacey Simms  9:10 It is incredible, you know, as we're marking 100 years of the discovery of insulin to think that someone such as yourself was diagnosed at a time really not that long after, at a time when many doctors and they still mess this up. But you didn't know the differences between the types. I'm curious, you know, I've heard other people talk about being diagnosed in the 40s and 50s. By medical professionals who kind of, you know, gave them really dire diagnosis or dire outcomes or would say, you know, you're really not gonna live that long. Were you I hear the emotion in your voice. Were you told things like that back then? No,   Jack Tierney  9:47 you know, that's, that's very interesting, because I remember Okay, for example, one of the doctors that I know just casually here in San Diego is Dr. Steve Adelman. And he too, is a type one diabetic. And I remember in paper he had written, he mentioned the fact that he was told that that he had he would live no more than 15 years. And he was diagnosed as a young adolescent. So I know that many people who were afflicted with type one word told, for example, one of my doctors is put me in touch with a two or three other type one diabetics here in San Diego who've had it for 60 years. And one of the women that I talked to she's now 70 and she was diagnosed at age 13. And again, the doctors told her that she would live no more than 15 years.   Stacey Simms  10:50 How did you then go forward? I mean, it sounds like you kind of alluded to it, you know, did the shots it wasn't that difficult, you know, again, the weight back but this was at a time before blood sugar meters. This was at a time where I assume if you were checking it wasn't very accurate. What were you doing?   Right back to Jack answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen . And our endo always told us if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon, it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more, go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvoke glucagon.com slash risk. Now back to Jack answering my question about how he stayed healthy.   Jack Tierney  12:06 Well, I'll tell you one of the tapes that I did with Jamie was on exercise, I quickly realized how important exercise was I just felt intuitively that I would utilize insulin more effectively via exercise. And so as I mentioned on the tape, one day when I was 23 years old, I played 50 holes of golf carrying my own bag. And I used to routinely play basketball because I'm six foot four, three to four hours, sometimes even five or six at a time if I had the opportunity away from my academic studies. So I just found that exercise was so important. And you know, I've been as somewhat of an exercise buff all my life. In fact, one reason why I contacted Yahoo and diabetics the connections because on a news release here in San Diego, I saw where Eric Tozer was running eight different marathons on every continent in the US over a short period of time. Yeah. And he's a type one diabetic. So, in fact, on one of the tapes, I say, whenever I get when two people like Eric, I really follow their story, because it's motivational to me to maintain the exercise level that I like to   Stacey Simms  13:37 let me jump over to Jamie for a minute, as you're hearing your dad talk about, you know, playing 50 holes, and golf and basketball. Growing up. Was he super active? Was this a family thing? Did he make you all get involved? Or was this his thing?   Jamie Tierney  13:50 Oh, no, no, we I've been playing golf and my dad, before I can remember, I was about two years old. And, you know, I was thinking because the US Open was fishing yesterday. And he used to wake up at three in the morning and drive down there and get us a place in line to go play and then then come home and wake me up and take me back there. And then we play golf and maybe come back and do yard work stuff like that. So growing up, I never thought it was any different than anybody else's dad probably more probably quite a bit more active than most other dads I knew around.   Stacey Simms  14:25 Was diabetes kind of in the background, then do you remember as a kid, or you know, as a young adult at all? I'm trying to envision what it would be like because now you know with insulin pumps, we see gems, we see it more. But I'm curious, Jamie, from your perspective, what it was like to grow up with a dad with the type plan?   Jamie Tierney  14:42 Well, I don't always see him do the shots. And you know, I don't remember ever asking him what those were about that I just remember. I was near what it was that he had to take medicine he had to do it every single day and had to do with a needle which isn't fun for anybody. I remember a few times, you know when when we would We are playing golf specifically with hot that he bring like a candy bar with him in case he would start feeling a little woozy he would, you know, he would, he would eat something to kind of revive themselves from there was a couple times I remember when it got a little bit scarier than that where he needed, you know, he needed some assistance needed to get back to the clubhouse quickly to get back to normal. So I was always aware of that. But again, you know, I didn't really know that much about the disease itself and how it works. Other than if you've ever looked a little bit off, it needs to get some, some carbohydrates and and quickly,   Stacey Simms  15:36 Jack, I would imagine and I'm just thinking from my own experience, as a parent and as a daughter are our parents generally don't want us taking care of them. And we don't want our kids taking care of us when we become parents. But type 1 diabetes is kind of always there. Were you consciously trying to think, okay, I don't want Jamie to have this responsibility. I've got this, did that kind of stuff go through your mind?   Jack Tierney  15:58 No, you know, I just felt you know, it's an affliction. Everybody has ailments and afflictions. And, you know, once I realize how valuable and importance for my health, taking shots where it just became second nature to me, and I just felt so much better. But I just told my wife last night, since I've been on the T slim X to in last eight months, I've never felt better in my life, and I'm 81 years old. So I just am seeing the value of the pump, you know, and like Dr. McCallum says on the tape, he was a little surprised that I would take to it but you know, I always respect him so much. He just told me that this T slim is really something and I'm just so thankful I took the leap eight months ago and did it because I feel tremendous. Having done I do feel better now that I'm on the pump than I ever did just taking shots.   Stacey Simms  17:11 Now, what led you to do this? It was was it a conversation with your endocrinologist?   Jack Tierney  17:16 Yes. And and just also, he told me that this pump was exceptional in his point of view. In fact, Stacy, I'll say this to you, I just and so long story but I did talk with Dr. Aaron Kowalski today the president of jdrf in New York, and he told me he's using the T slim the Tandem t slim max to also so that made me feel really good. That maybe this is definitely it just reinforced by decision as being a very good one. Well hearing about this from Dr. Kowalski. Well,   Stacey Simms  17:56 I know Dr. Kowalski, but we chose it to and I gotta tell you, I absolutely love it for my son. It's just the software. It's great. So you were already then using a Dexcom CGM. Because if you're listening and not familiar, the Tandem system works with the Dexcom. Right. Are you using that together? And had you been using a CGM for a while?   Jack Tierney  18:16 Yes, in fact, that's a funny story. You're gonna love this story. What happened was about three years ago, I went to see Dr. McCallum and I wanted to get on a continuous glucose monitor. Because, you know, I'd seen it advertised and it just sounded like the cat's meow. So I'm waiting to see him. And there's a young man waiting to see another endocrinologist. And he says, Dr. Tierney, and I said what and what it was, it was a gentleman, a young man that whose first name is Brandon. And I saw Brandon when he was nine years old to help him get ready for a test to get into a highly academic private school here in San Diego. And he at the time, he told me he was a type one diabetic. And so what happened was he was using the Libre and went over all of the advantages to the Libre before I saw Dr. McCallum, so I walked into Dr. McCallum's office, and I said, Well, Dr. McCallum I think I've made a decision on the continuous glucose monitor that I should be using because I one of my former students told me the benefits up Wow, so I went on the Libre. But then, in fact, at the time that I went on the Libre, the Dexcom, six wasn't available, right. And so it just sounded like the best one for me at the time. But then, of course, eight months ago, when I made the decision to go on the T slim. They told me it was worked in concert with the Dexcom six and that's why of course I switch to that saying it's great to   Stacey Simms  19:58 Yeah, it's it's Wonderful to have these choices. You know, I was gonna ask you, right, I was gonna kind of ask you to take us through the process of going from, you know, no home blood sugar meter to kind of you know what it was like in the 80s. And then, you know, the different insolence, but you like rocketed ahead, and now you're on a hybrid closed loop system. So you've right, it's   Jack Tierney  20:20 so sad, you know, there was nothing available. Thinking back, I did a lot of research before I did the eight tapes that Jamie debts. And one of the things that I learned and I had read a little bit about that, because I read a lot about that diabetic compilations and controls study that was done in 1980s and early 1990s, with type ones. And you know, in fact, they abbreviated the study early because it showed that tight control of type one of your blood sugar is imperative. In fact, I think I in my research for those tapes, that study I think, yeah, it was called the DCC, diabetic comm closed stations control trials dcct. And that thing, that thing, I was concluded early, because it showed how important it was. And I think as a result of that the a one C was developed, and also kilmallock. Because before that I was using NPH, insulin from 1961 until the latter part of the 1990s when human log became available, and also, I got my first day one see back in the 1990s. Well, because that wasn't available. Until you know after that monumental study, the dcct. That's when the a one c came about, I believe. And also more synthetic insulins like human lock, right. And that helped me a lot getting on unilock it really good. But I didn't get on that till about I think 1998 1999 thanks to Dr. McCallum   Stacey Simms  22:13 What does he say to you? It's must be really interesting for him to talk to someone. I mean, my guess is that you educate him about many, many things as well. I'm curious. It just sounds like he's really open minded and really a team player with you to to encourage someone who has you know, not but on an insulin pump has lived with type one for more than 60 years. And then to make that change. Do you feel like maybe you're educating him as well? Oh, yeah, I   Jack Tierney  22:41 think it's mutual. Definitely. In fact, what happened was, Jamie said to me in mid March, he said, Dad, I'd like to interview Dr. McCallum. We've done the eight tapes. But like Jamie just said previously, I'd like to interview Dr. McCallum. So I called me and Jamie had to come down here on another job to San Diego from LA. And he wanted to do it on a Friday afternoon. Well, I called Dr. McCallum and he said, You know, I can't do as it's just chaotic once you guys come in Saturday morning, I couldn't believe he invited us in Saturday morning. We were the only one over there. And so I said to him, Well, can I sit in and listen, because Jamie interviewed him for an hour and a half. And I resist taking in his responses to all the questions, because you know, a lot of what he presented I had not heard before. And so it was just a very good education on my part to hear his responses to Jamie's questions. And also all along. He's been very respectful of my what I've learned. I'll give you one good example. And this is good to know, for every type one diabetic, sure, you got to pay attention to your endocrinologist, but also, you've got to pay attention to your experience. I remember when I first got on insulin back in the early 1960s that I was obsessive compulsive about making sure it was refrigerated. I mean, I was Oh, CD on it. I really was well, I'm reading a Life magazine. And this had to be in like 1963 about a gentleman by the name of Franklin, Billy Talbert. And Billy Calvert was one of the greatest tennis players ever. He was diagnosed in 1929. He lived to be 80 years old. In fact, that's one reason why I made the tapes. I said, Well, Billy made it to 80. Maybe my time is coming up. So I better do something that I've been contemplating doing for a while. But in that article back in the 60s, this is what Billy said, I'm playing tennis all over the world. I can't keep my insulin refrigerated all the time. And so I wasn't as I can, you know, you kind of learn by experience what you can do in the like, I mean, sure you take the advice of all of your doctors. But after that I wasn't obsessive compulsive about keeping my insulin refrigerated when I learned what Billy tailrace experience was. And that's what I found with Dr. McCallum he really paid attention to my experiences with this chronic illness. That's great.   Stacey Simms  25:28 Jamie, let me ask you, you know, you are a filmmaker, what do you hope happens with this video, I could ask you why you made it. I kind of have, you know, there's so many reasons why you would do something like this. But I'm curious to know, why did you do it?   Jamie Tierney  25:41 Well, I mean, my dad asked me to maybe not make exactly a film like this. But I just think it's an interesting story. I mean, when I when I got into it, I mean, the thing that kind of hit me the first thing that he survived for almost two years without insulin, yeah, I don't know how that happened, to be honest. And, and I tried to do some research. And I did ask the doctor, how many people have ever made it for that long, I don't think there's too many have forgot about it. He's my dad, but just from a human interest perspective, that someone could survive like that on a small amount of calories and no insulin with basically the pancreas not producing any more insulin at all. So that I feel like it's, it's pretty interesting, just the triumph of the human spirit, I think, and then having lived for, you know, 16 more years after that episode. And but then also, what's interesting to me is just how he's gone through every single phase of treatment. I know the first two treatments were began in the 20s. But it sounds to me like in the 60s, when he first started, it was basically a similar treatment to the 20. So it's pretty much gone through every single medical advance. And I just wonder, again, how many people are out there who are 81, who are getting started on something technologically advanced, like this pump and take into it? I feel like there's an interesting story there, too. I don't know how many people are are in his in his boat with that, too. Yeah. Can I piggyback a little bit? I'm going to tell you something. I haven't told too many people. As we said earlier, Jamie did fill eight scripts. Well, everything led to script number eight. And in script number eight, what happened was from 1992 to 1995, I was asked to be superintendent of the schools in a school district, that was the worst in the state out of 1000. And when that three year period finished, I believe, and maybe I don't think I'm off on this. It became the best school district in the state. And Jamie was getting his master's degree at USC, and screenwriting. And he said to me, dad, someday you have to tell this story. And I thought that was commendable on his part. In fact, he bought me a recorder. And so for a whole year, whenever I was driving, in my new assignment anywhere, which involved a lot of teacher training, I would record my thoughts. And when I finished, I recorded 55 hours of material. And I vowed to write three books. And I have written those three books on my experience there. And that is my ultimate reason for doing these tapes with Jamie helping me because I want to get a little bit of personal notoriety out there in hopes that a reputable publisher will publish my three books, because I think I've got a story. In fact, I told my wife and I just finished watching Downton Abbey because many of our friends thought it was so good. Well, I said to myself, after I watched Downton Abbey, my three books are an American Downton happy because it's a story that in fact, when I was contemplating doing when I started writing the three books of fellow Superintendent friend of mine said, Jack Tierney, he said, You beat me to it. When I retired, I was going to write a Michener light novel titled School District, because what really goes on behind the scenes in a school district has never been taught and what goes on in a border town. The story of what really goes on a border town has not really been told yet. And that is my ultimate person, poor person. I want these books, hopefully a reputable publisher rather than my working on self publishing, and maybe even three movies be made because I think it has the potential for that. And every month cent made will go to be find a cure for type 1 diabetes.   Stacey Simms  29:57 That's great. Well as we start to wrap this up, I'm curious to ask we on this podcast hear from a lot of adults who have been diagnosed with type one, I mean, sure, there's a lot of children as well, this audience is really half and half. And I'm curious, what would you say? What would you say to somebody you know, who was 60? Or 50? You know, who's not six years old? What would you talk about or tell somebody who's diagnosed as an adult?   Jack Tierney  30:21 Well, I probably would say the same thing. That I would say to someone who's diagnosed that like those four young men that I saw, for SAT prep, one of them was diagnosed at age three, the other two were re diagnosed at age seven. And then Brandon, who I mentioned earlier, nine, they have the ability and the courage to take this head on, you know, it is a chronic ailment, but with taking the advice of your endocrinologist and working at it, it is indeed manageable. I'll tell you what one one of the four young men told me when I met him for the first time, we finished the session on SAT prep. And I knew in advance that he was a type one diabetic, he actually had been diagnosed when he was seven. And he was now 16. And I said to him, I said, Well, probably in your lifetime, there will be a cure. And you know what he said to me? You're not going to believe what he said, Stacey, what did he say? He said, I wouldn't take it, huh? Because he had learned how to do it. And he had met this challenge. In fact, when he said that to me, I said, Jamie knows I've said this a lot. I think a lot of young people today, we don't have fixed rites of passage and societies too much anymore, where you did something notable. And the whole community recognized you as a aspiring adult. So young people are picking their own ways to prove to themselves the world and their families that they can stand on their own two feet. So I think that's why that young man made because he had his rite of passage thrust upon him. And he felt that he had successively done it. And so he didn't want to take him away necessarily. Yeah. Anyhow, that's my degree in philosophy. Coming to the fore here on why he responded the way he did, I've heard my dad tell versions of the story, my whole life, but it's, it's nice to have something that you can condense into 11 minutes and hopefully that people can get a sense of him, but also just how you can thrive and have a great life amidst the challenge of this disease. And as he says that, you know, hopefully, this this treatment is, is great, but hopefully there is a there is a cure someday and stories like harrowing stories of what my dad went through it in something. The future,   Stacey Simms  33:04 Jackie, so playing golf.   Jack Tierney  33:05 Oh, yeah. All right. Oh, yeah. I don't play that well, but I love to play. And what's best of all, I love playing with Jamie and his sister. In fact, every time we play, they're a lot better than I am. And they always give me a good tip. And that helps me to play a tad bit better. One of my neatest experiences as a father. In fact, the three of us, three of us always played on Father's Day. We don't now because Emily's in Cape Cod as being a doctor and Jamie's MLA. But whenever we did, when they were in elementary school in high school, it was one of my fondest memories on Father's Day.   Stacey Simms  33:51 Well, thank you so much for sharing your story. Jamie and Jack, I really I can't thank you both.   Jack Tierney  33:57 Give your best to your son, your 16 year old now. Just neat. He's doing so well. And what a champion he is.   Stacey Simms  34:06 Thank you very much. That means so much. And I appreciate you both coming on to share your story. And you know, we can learn so much from it. So thanks, guys. I really appreciate it.   You're listening to Diabetes Connections with Stacey Simms. More information about Jack and Jamie at Diabetes connections.com including the video with lots and lots of photos, Family Photos, if you'd like to take a look at that. I really appreciate them coming on. So much fun to hear that story and really reflect back and I love that you started using an insulin pump. Just last year, I have a friend who was diagnosed with type one in her late 60s and immediately went out and got the technology she wanted. A CGM right away hasn't started using an insulin pump yet she may never and that's okay but just knowing that the option is there. I think it doesn't matter what age, right? It's all about finding what works for you. And if you're interested in learning more about people who have lived a long time with type one, like I said, at the very beginning of the show, I've talked to several people who've lived, you know, 60, or even 75 years with type one, Richard Vaughn comes to mind. But there are a couple of other people who've been on the show before. And I'll try to link that up in the show notes as well and kind of make a little list if you'd like to go back if you're new to the show, and want to hear more from these incredible pioneers in our community, a little bit more about in person connections and things like that. But first Diabetes Connections is brought to you by Dexcom. And you know, a couple of weeks ago, we were watching TV, and I got a Dexcom alert, Benny was upstairs in his room, we were downstairs. And for some reason, it kind of took my brain back to the days when we basically had blood sugar checks on a timer, we would check during the finger stick the same times every day at home and at school, you know, whatever extra we needed to as well. But it's amazing to think about how much our diabetes management has changed with share and follow. I didn't have to stop the show to get up and check on him. I knew what was going on, I could decide whether I wanted to text him or you know, go upstairs and help him out. Using share and follow apps have really helped us talk less about diabetes, which I never thought would happen with a teenager. Trust me, he loves that part too. And that's what's so great about the Dexcom system, I think for the caregiver, or the spouse or the friend, you can help the person with diabetes manage in the way that works for you know, their individual situation. Internet connectivity is required to access Dexcom follow separate follow app required, learn more, go to Diabetes connections.com and click on the Dexcom logo. So tell me something good is usually where I share your good news. And hey, send me your stuff, Stacey at Diabetes, Connections calm or I'll post in the Facebook group Diabetes Connections va group, I'd love to hear the good things that are going on for you, you know, this summer, and as we head into August, let me know what's going on. But for me, the Tell me something good this month was friends for life. I didn't even realize how much I needed that until I was there. If you're not familiar, and I know many of you are joining me because you met me at that conference. But if you're not familiar, it is the largest diabetes conference in the country. This year, they made a joke. It's the largest one on the planet because it's like one of the only ones happening on earth this year. Usually it's almost 3000 people meeting up in Walt Disney World at the convention center there. It's gosh, it's so hot in Orlando in July, but it's always so worth it this year. I think it was about a third I want to say maybe 1000 people were there was a smaller event. But it was still fantastic speakers education a chance to meet the industry people touch insulin pumps, talk to vendors, things like that. There's a lot of stuff happening. And for the kids, you know, it's a chance to see and and adults too, it's a chance to see lots of other people wearing the technology that many feel self conscious about. And usually by the end of the week, and I met a family like this a shy seven year old who didn't want to meet anybody and was almost hiding in her hotel room was jumping in the pool by the end of the conference showing off her Dexcom and her insulin pump. So it's about empowering people with diabetes. It's about educating families. It's about support. As I mentioned, last time, we had an episode I was gonna say last week, but it was two weeks ago. I mentioned a new presentation that I was doing reframe your diabetes parent brain. I thought that went really well. I was really thrilled with the crowd. really terrific people. And they did the presentation. I was always afraid of people gonna play along and give me their examples that everybody was great. So if you are interested, I'll do this on zoom. I'll come to your group. Welcome to your parent meetup. It doesn't have to be anything formal. It's really just about taking the terrible things we say to ourselves. I'm failing my child. I'm the worst Mom, I'm not doing as well as everybody else. How could I possibly have forgotten the blah blah blah. And reframing those thoughts to help us not only feel better, this isn't like a woowoo thing although there's nothing wrong with with changing the way you feel. But this is really actionable stuff about seeing how you are actually living so well with diabetes and you're doing a great job and your child is thriving right under your nose when sometimes you think everything is going wrong. So that was really fun. Sometimes it friends for life or new at the at a conference a couple weeks ago. Sometimes there's big announcements about new technology or you know, people will do presentations and show the new stuff. There really isn't anything like that this year. There's a lot of delays because of COVID. As you know, if you listen you know we are waiting for Omnipod five with Horizon, we are waiting for tandems boltless by phone, we are waiting for Dexcom to be submitted to submit g seven to the FDA. So there's a lot of things we're waiting on. But the community is always there. And I really really needed to see those other moms to hang out with everybody and just to breathe that air again. So thank you so much for everybody who came who said Hi, and who's listening. Now. We also had a really, really great meetup in the Charlotte area and I only share this because you can do this where you live, even if you don't know anybody with diabetes, reach out to your local jdrf or post in some of these Facebook groups post in the Diabetes Connections group you never know maybe there's somebody who's local to you and start talking about let's get together. We had a fantastic meetup. It was parents and kids, and it was adults with type one. Our chapter has really gotten on the ball with adults, they have a whole volunteer outreach now for them. And you know, it's so cool to see people of all ages living well with diabetes, and we all help each other right? So I share that not just to say, isn't my chapter great, which it is shout out to my fabulous friend and Sutton, who makes that chapter home. But also just to spur you on to think about meetups in your own area. They're hard to organize, I do them too. And it's sometimes 20 people come sometimes two people come, but it is really worth it to keep putting it out there and keep trying to find parents, kids, adults in your area, we need our diabetes community, you only see your doctor for teeny weeny amounts of time, every couple of months. Diabetes is 24 seven. So reach out, find people post in the Diabetes Connections Facebook group, if you have questions, we can help you I do a whole presentation on making connections. So I can definitely give you tips and tricks, especially as we get closer to school starting about how to find other families in your area. All right before I let you go, if you have listened for this long as you are listening to this episode, if you listen as it goes live, Benny knock on wood should be coming home from Israel today. As I am taping, it's still a couple of days away. But it will have been a month and I should be picking him up at the airport as this episode is airing. I am hoping that after he sleeps and showers, or sleeps for a couple of days, that he will do a debriefing on the show and talk to me about what it was like not just going to Israel with camp for a month. But what it was like doing all the diabetes stuff completely on his own. At this point. I don't really know a lot. I've seen his numbers. And I think I know what's going on. But I really want to hear it from him. So couple of days left, I can do it. Keep breathing. Oh my gosh, this has been so stressful. And I will share more with you all warts and all. I'll share the honest story, but not until he's back and home safe. All right. Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening in the news every Wednesday live on Facebook at 430. And then we turn that around into a Friday podcast episode. Do not miss out in the news is like six or seven minutes. It's real quick. I'm trying to get it to five minutes, but I can't get it to five minutes. It's only six or seven minutes long. There's just so much good stuff happening and news to bring you from the diabetes community. So join me every Wednesday live for that or listen for the episode here. I will see you back here in just a couple of days. Until then be kind to yourself.   Benny  42:51 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

What do we know about the upcoming Dexcom G7? Find out in this conversation with company CEO Kevin Sayer. As usual we have a long list of questions from you covering everything from adhesives to watches to more. Sayer shares details about how they're preparing for the G7 rollout once it's approved, as well as issues with Medicare, integration with their current pump partners and when arms will become an approved wear site for US customers. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Dexcom G7 "sizzle reel" Get your diabetes gear to stick! Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription below   Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed autoinjector for very low blood sugar, and by Dexcom help make knowledge your superpower with the Dexcom g six continuous glucose monitoring system. This is Diabetes Connections with Stacey Simms. This week, a Dexcom update from the company's CEO. As usual, we have a long list of questions from you covering everything from adhesives to watches to more about the upcoming G7.   Kevin Sayer  0:41 And the goal is to simplify CGM for everybody across the board. What I often say is everything you love about G6, you'll love more about G7. The size is so small, you don't really recognize it's on your body. It's really a great profile a little bigger than a nickel   Stacey Simms  0:56 CEO Kevin Sayer will also share details about how they're preparing for the G7 rollout once it's approved, as well as details about Medicare and use but their pump partners. This podcast is not intended as medical advice. If you have those kinds of questions, contact your health care provider. Welcome to another week of the show, always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son Benny was diagnosed back in 2006. Just before he turned two he is now 16 and a half my husband lives with type two diabetes, I do not have diabetes, but I have a background in broadcasting. And that is how you get the podcast. My usual disclaimer, whenever we have them on Dexcom is a sponsor of this show, you will hear their commercial later on. It's because we love the products. But when we have people from Dexcom on as guests to give you information, they don't tell me what to ask or what to say outside of that commercial. And I just want to take a minute to say I very much appreciate Kevin Sayer and others from Dexcom being so accessible over the years, you know, they don't always answer my questions, but at least they come on and address them and listen to them. There are a lot of companies that are very reluctant to even do that who won't come on the show. And that's really unfortunate because you as you listen, and you know the diabetes community overall, I'm very much entitled to speak to these people and to these companies. So I will keep pushing nicely, but I'll keep pushing, I promise quick heads up there will likely be no longer format episode like this one next week. I'm still gonna do the in the news episodes that I have added live on Facebook and then turning them into podcast episodes. But I am as you listen, if you're listening as this episode is going live, I met friends for life. I'm at the conference. They're having it again. I'm so excited. It's the first diabetes conference I have attended since February. No, since the first week of March of 2020. I went to a JDRF conference in Wilmington, just as COVID was beginning it was very weird. If you did anything any kind of public event in March of 2020. You remember that? But I'm back. They're back friends for life. And I really don't want to rush out an episode. But if anything exciting or you know breaking news happens or I'm able to record something and put it out I will but just a heads up likely no episode next week. Alright, and this week, not much of an introduction needed. Kevin Sayer is the CEO of Dexcom. And this interview focuses on some of what came out of the recent Ada scientific sessions and att D conferences. But mostly I share your concerns and your questions. We've covered a lot of these issues before, I don't ask a lot of follow up about things that in my opinion, you can easily Google up as usual, I had limited time with Sarah, who was doing back to back interviews. So if you have a specific question or if things went by very quickly, definitely jump into the Facebook group. You can comment on the post with this episode. We have some amazing members who will answer your questions Who will show you where to find the information. It's likely a previous episode, but we have people in clinical trials with people who were in on a lot of the investor calls they listened they take notes, they're fantastic. So if you haven't joined Diabetes Connections, the group on Facebook I highly recommend it. my interview with Kevin stay here in just a moment but first Diabetes Connections is brought to buy Gvoke Hypopen  and you know low blood sugar feels horrible. You can get shaky or sweaty or even feel like you're gonna pass out. There are lots of symptoms and they can be different for everyone. I am so glad we have a different option to treat very low blood sugar Gvoke Hypopen is the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle. Before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. And this made emergency situations even more challenging and stressful. This is so much better and I'm grateful we have it on hand. Find out more go to Diabetes connections.com and click on the Gvoke logo Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot comm slash risk. Kevin Thank you so Much for jumping on with me another busy time for you as so many presentations, lots of studies, lots of news, lots of upcoming and anticipated news. So I appreciate you spending some time with me and my listeners. Oh, thank you for having me. It's always fun. Let's set the table a little bit here. We are following up on the ATTD conference and you are in the midst Dexcom as we're speaking of ADA, this is all still virtual though, right?   Kevin Sayer  5:25 It's all still virtual. Yeah, I was looking was hopeful earlier this year, it might be in person, but not yet, probably not till next year.   Stacey Simms  5:33 Well, as we look through the news that is coming out of both of these conferences, I could just start out by saying it's kind of I'm not sure victory lap is the right phrase here. But it does seem that almost every study is basically Kevin CGM works, it's good. It helps we get better outcomes from it. So let me just give you a moment to talk about some of that. Because there were so many we can't really touch on all those studies.   Kevin Sayer  5:58 There are so many studies, and it's good for a number of different groups as well. You've got all the automated insulin delivery studies, and other the Medtronic product all these other studies are powered by Dexcom. You've got stuff in the UK, France, Insulet Tandem in the US, there's a lot of good news on the automated insulin delivery system front. And all these works are powered by Dexcom G6 right now, you've got studies that we presented at att last week, or that were presented by physicians that were very well aware of the mobile study, which was for patients with type two diabetes who are on basal insulin only. You know, when you start a study like that, it's kind of a risk, because you asked yourself the question, what happens if it doesn't work? Well, it works. And what we learned is these patients, even though they're not making a decision every four or five, six hours, because for eating, they are making decisions about what they eat, and what they do and how they exercise when they can see data. And they can see the effects of what goes on in their lives. And their timing range goes up significantly, if they can see what their time and range is, you know, they've been operating in the dark, and people would argue that they don't need it all the time, like I do. And so that study, we think is just really good and will be the basis, hopefully someday for getting CGM coverage for that group of patients. And so we'll push on that one. There was another study we had last week, or at ATD. Early in the month, published in Belgium, where a coalition of diabetes gurus I guess over there's best icon, it's really all the leaders in the Belgian diabetes community took a bunch of intermittent CGM users and put them on Dexcom G6 for an extended period of time. And then we've looked to see what happened. And what we saw is on real time CGM, the patients are better in every category, every single category, time and range, hyper hypo, you name it, they did better. So we really did validate the Dexcom equation over competitors with that study. And we think it's very important. I realize real time CGM, it is important, it is important to data be accessible. And the alerts are something that you can use. There are other studies being presented by other people in the type two who are reading Kaiser's got a study where they show patients do well on doulas got several studies, they're across the board. And the evidence is building for these other markets. But it starts at the beginning, obviously with automated hands on delivery and, and we work our way down. But we've had information presented across the board showing the utility of Dexcom. And if you've been to this study 10 this meeting 10 years ago, like I was when I first started here, my literally my first month was my first Dexcom ada, nobody even knew who we were. And those who did said yeah, products not real great. So times have changed pretty dramatically.   Stacey Simms  8:41 Do you remember what what that first study that was presented at ADA or ATTD? which one it was that you were there for 10 years ago? I'm curious that back in the day,   Kevin Sayer  8:50 yeah. First study, we didn't even present studies. Back then we, I will tell you the most important study we did, we did a study in where we first got ADA recognition, we did a study with our G4 system against a competitor in Europe. And we got a bunch of recognition there. And then the next study that really got us a lot of recognition in Ada meeting was our diamond study where we show the people on multiple daily injections. If they went to CGM, they would get much better results. What it was hard for me to learn is you don't say I want to do a study like this and get it done in a week. It takes a couple of years to accumulate all the proper data, process it develop all the subsets and everything. And so my patience has been has been level set with respect to studies like this. And there's multiple studies going on in the field that will be present over the next several years.   Stacey Simms  9:44 All right. Well, that's a really good segue to moving ahead, because, as you know, my listeners are very interested in this technology. And the slide that probably got the most attention in our groups was one that was presented at ATTD about introducing the Dexcom G7, showing all of the features of this. So let me I'm not going to go through all of them, obviously. And you and I've talked about this many times before, but faster warm up. It's smaller, simple application all in one. This is all still part of the plan, as we had talked about before. Yes. Okay.   Kevin Sayer  10:20 Yeah. And, you know, we started working on the G7 before G6 was even in clinical trials. The G7 is a project we've envisioned for a long time, verily, actually was Google Health before then, verily was a partner with us in designing this product, and we working out for quite some time. And the goal is to simplify CGM for everybody across the board, what I often say is everything you love about G6, you'll love more about G7, the size is so small, you don't really recognize that it's on your body, it's really a great profile a little bigger than a nickel. It we're running this study with arm and abdomen indications. And while patients were in wherever they want, we're going to show you that it can be worn wherever you want. And I think that's a big deal that we go ahead and do the work to do that. The faster warmup is kind of mind blowing when you put a g7 up and then you look after you pair it. And then you look and say you only got 25 minutes left, it's like, oh, wow, I don't have to do the two hour countdown. You know the accuracy and performance that Jake presented. ATTD shows that we're not, we're not ever going to go easier on the performance side and say good enough, we always push ourselves to offer something that will keep people save and confident with what they have. The app is completely new, we'll build things into the app over time, like automated, the frequently asked questions feature we have now but we're just gonna keep making it better. Some of the features of our clarity system will ultimately be in the app. So you'll get more information. When you go to it and look at it out of the get go. You know, we'll get it approved. It'll be a while before our partners have integrated their systems. But we're working with Insulet and Tandem already on G7 integration, I it'll be able to talk to multiple devices at the same time. Its manufacturing cost, ultimately will be less expensive. It's been designed for an automated process. And we've got fully automated lines up and running to assemble the G7 sensors we have in fairness to have automated G6 lines up and running now to but we've got special transmitter lines and center lines and different those kinds of things. It is going to be a really the most advanced CGM ever   Stacey Simms  12:25 Well, you've touched on a couple of listener questions already in that testing alternate sites, including arms integration with the systems that are already using G6, so I don't want to spend a lot of time going in depth on things that you've mentioned. But in the slide it said direct to watch capability.   Right back to Kevin clarifying what was meant in that slide. But first Diabetes Connections is brought to you by Dario Health and bottom line you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us with that and that he understands the plan has to change as Benny gets older, you want the kind of support to take your diabetes management to the next level with Dario. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a1cwithin three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario's diabetes success plan and make a difference in your diabetes management. Go to my daario.com forward slash diabetes dash connections for more proven results and for information about the plan. Now back to Kevin Sayer, answering my question about what the company means when it says the Dexcom g7 has director watch capability.   Kevin Sayer  13:44 capability. Yeah, it won't go there first pass. But we had to have different electronics and a different radio set to go director Watson what we have in G6. And it's easier to get us to change and is to get Apple changed or to change their watch. And so as we were doing the g7 system, we did contemplate that. So it is configured to do so I do not believe it's in the first release. But it will be not long after that. We'll have a direct watch capability. And we know people really want to watch presents interesting problems. And we can all sit and say we want that. But you have to charge your watch every day or at least every 36 hours. Where are you getting your alerts if you're direct to watch and it's on the charger. And you're in different parts of your house. There's complexity sit a watch that go far beyond just direct to connect. And particularly with the FDA who've used the alerts in the alarms. I think connectivity is so important that we had to make sure we do it right. So we'll work on that and get it wired appropriately. But I look I know what something I would want If I were a user. So I we continue to push for it.   Stacey Simms  14:44 Just to follow up on that. When you say it won't be in the first iteration of it. But you know, it'll it'll be it's capable. It'll come that it kind of implies that you figured out what to do with the alerts and alarms when someone hangs it up to charge.   Kevin Sayer  14:56 I don't know what they have figured out. I just know they're addressing it. All right. I have to plead the fifth, I just as I've asked that question, they said, Well, here's a problem. How are you going to deal with that? I said, Well, you guys don't have to tell me. They'll come up with the right answer I   Stacey Simms  15:09 So I'm sure they will, but to say direct to watch capability, there's a little parentheses that says when we figure it out, oh, wait, I know we're working on but   Kevin Sayer  15:17 okay. But Stacy, we couldn't even go direct watch before with the electronics. We couldn't go direct to watch with a G6 transmitter, the g7 electronics stack and configuration is such that it can go direct to the watch, we could not watch G6.   Stacey Simms  15:32 Okay. Many more questions. My listeners are very, of course interested in the adhesive changes is the G6, two G7 change. I know you're addressing this in your testing, we've got emails from people who are in different trials for adhesive and reactions and things like that. And I have lots of questions people say it's getting better other people say it's getting worse. Anecdotally, it's very difficult, obviously, for me to now talk to you a little bit about those changes and how it's improving.   Kevin Sayer  15:58 Well, we've tested numerous adhesives before we landed on the adhesive we we selected for g7, one of the reasons we kept the product life down to 10 days is to make sure we have enough adhesive to get to that 10 days, we'll be putting the overpass in every box. So if somebody wants an overpass, they don't have to call us. So everybody should be thrilled with that one. And it's quite easy to use, we're hopeful that there's no allergy. With G7, somebody's always gonna have a reaction does just physiology, but we're working with new tapes for G6 already, where it will hopefully have something the things that cause a lot of the allergic reaction in G6, we've eliminated from the G7 manufacturing process. So we're hopeful that a lot of this stuff goes away on its own, we'll monitor it very quickly. But we've already got four or five other g7 adhesives in test in addition to the ones that we're going to launch with, to make sure we can create better options in the future if we need to. So you know, stay tuned on that one, we are comfortable. As I sit here, we will not have the same level of reaction that would have at G6 when we change it. But yeah, we won't know till we're out there. Yeah.   Stacey Simms  17:10 And you mentioned the 10 day were and part of that being you for adhesive. But my understanding is that the idea is for 14 day wear for Dexcom. She said eventually,   Kevin Sayer  17:19 eventually, eventually not again, that first pass or get it approved with 10 day data, very important to us is that we provide our customers with the experience they paid for and they signed up for. And we've looked at competitors reliability data, how many make it out to 14 days, or how many make it seven days if they only have seven, and we look at, it's one of the key management indicators, we monitor how many of our sensors are making it out to 10 days, and we've set a pretty high bar for how we want our system to work. And while we could have lost a longer lasting product, we wouldn't have hit the percentages with the configuration that we have. And so we said, OK, 10 days is enough. Our patient base is fine with 10 days as long as we deliver on the 10 days that we promise. And we'll get into longer live trials literally as soon as we're done with these and hopefully move it over. Because that does cost us a lot less and give us more pricing flexibility over time for the various groups. But for now we'll go 10 days, mainly, so we have more reliability. That's the biggest reason.   Stacey Simms  18:22 I have a few more G7 questions, but they're about pricing and accessibility, why?   Kevin Sayer  18:26 You know what I can I can answer most, okay, because we can't really go address pricing until it's approved. Right. And we have as we put our G6 contracts in here together over the past couple of years done so in anticipation of a g7 product to whereby, for example, for Medicare, it's a fixed charge per month. And for many of our insurance contracts, it's resembling more that type of business arrangement, we're hopeful that we can transition to g7 very quickly. But we will have to go to all your payers and get G7 covered before they'll pay for it. We're hopeful that'll be a quick process. But in the meantime, G6 is a great product and people will be able to use it, I can't give you a timeframe as to how long it'll take will have to go to CMS will have to go to all the Medicaid groups as well, what we're trying to avoid. And let me repeat what I don't want to deal with is one of the things I dealt with with the G6 for a long time, we didn't have enough inventory of production capacity to get it to every group. So the Medicare population was stuck with G five for quite some times those emails were not good. We want to make sure it's equal access when we can get it in the channel for everybody. And we're trying to build that type of capacity.   Stacey Simms  19:34 A couple of what if questions, just kind of looking down the road JDRF recently announced that they are looking for and this is the very beginning. So as you listen or as you're watching, this is not in the works yet. This is a call for research that they are looking for a CGM that could also measure ketones, and I haven't seen any companies step up yet publicly to say yes, we're working on that we'd like to be part of that is that Anything that Dexcom is thinking of doing.   Kevin Sayer  20:02 We've explored this for quite some time long before the JDRF initiative. And the question I keep asking, is continuous ketone measurement important that we know that for the pediatric world that if you measure ketones continuously, you might predict dangerous decay moment before it happens. But at what cost to the system? And is there a cost benefit associated with this? So we're setting all those things? We're in the learning phases, we think we have a platform that can do that. But we've got to decide do you sacrifice glucose accuracy? If you throw a ketone sensor on there? There's a lot of answers. We don't have yet. But we're in the early phases. And we've talked with JDRF and others about it, is there a better way to measure ketones that might be easier and less expensive? I don't know. We've looked at several other analytes to go with our system over time. And I think in the future, that'll be some but that's not coming from us for at least three years, if not longer.   Stacey Simms  20:57 You've looked at other analyze satellites, tell me about what else has been looked at just for free? No.   Kevin Sayer  21:03 Well, I won't go into all of them. I certainly look at lactate from a stress level. And for physical fitness, for example, there are a lot of athletes, you'd like us to produce a lactate sensor to whereby they can measure the progress of the physical fitness. There's also used for lactate in the hospital environment with we think with respect to predicting things sepsis over time, but those are you know, that's one of them. And we've looked at a few others and fail, I won't go into all those. We've looked at some that may be promising. What we find from time to time is Yeah, what we'd love to measure but we can't is insulin on our wire. There are any way we could measure insulin in addition to glucose, wouldn't that be awesome? We know exactly how much insulin you have on board. And we know exactly Well, we can't we we've not been successful at that one that would require a different technology than what we have. So we look at all of them. And over time, we think we'll have some some good stuff there. But not for a while.   Stacey Simms  22:00 Um, you know, you mentioned hospitalizations. And last year we talked about the CGM program in hospitals. I forgive me I, there were so many studies at ADA and ATTD. I don't know if this was presented. But let me ask a general, how is it going? Are hospitals adopting and adapting to you are   Kevin Sayer  22:16 they are adopting and adapting is harder than adopting? Yeah. Because, you know, this is a device that was designed for your listeners. And for you. It wasn't designed as a device that was designed to be used in a hospital room with all of the cybersecurity and connectivity issues of a hospital. Where do we send the information? How do we get it there. And and so we've got to solve the workflow issue to make this meaningful in the hospital environment. Over time, what we have learned is our technology is more than good enough to go there. And that the places particularly where you have an endocrinologist very heavily involved in treating the diabetes patients in the hospital rather than a cardiologist or somebody else, when there's an endocrinologist involved, we can go very quickly, they can learn some of the hospitals would take an approach, let's put this on everybody. Others would only take an approach. Let's put this on severe cases. So there have been different protocols used. But by and large, the response to CGM in the hospital has been very, very good. And we think it is a great market for us over time, we got to work on the proper configuration for workflow. I mean, one of the best examples, how do you get the data to the medical record? Because everything in the hospital goes to the medical record? How do we make that seamless? We haven't figured that out yet. And that'd be important for all of our users even outside the hospital. Imagine how much easier would be to go to your doctor and have your Dexcom date already sitting in the medical record when you get there? We're not there yet. But we're having a lot of good discussions on that front.   Stacey Simms  23:42 One of the topics that's been kind of in the community recently, and I don't think it's so much Dexcom. But I want to ask you, anyway, is this issue of and you mentioned, athletes who want to measure certain things of people without diabetes, using Flash glucose monitoring, or continuous glucose monitoring? I'm curious is that a market that Dexcom is looking to pursue? I mean, the g7 is smaller, it's lighter. And you know that I'm asking this because we've talked many times before, people who use insulin, are very much afraid of not being able to afford being left behind if many, many, many people who may not use it in the same way, started adopting these products.   Kevin Sayer  24:19 Let me address that in a couple of steps. Let's talk about the use case. First. There are people a lot of people using Dexcom, who do not have diabetes as a health and wellness tool. And there are a number of apps that are being developed that require glucose information to level set your nutrition now possibly type two diabetes or pre diabetes, but there are groups and some groups with some very interesting ideas as to how to change your diet based on glucose data to make you healthier. We were used many years ago on the biggest loser with every patient that came in the door and the one of the production people I don't remember which one might have been the physician came to me and said you need Yeah, the diabetes business you can make a lot For many weight loss fall, we're not getting out of the diabetes business, that's where we are and where we stay. One of the things we've contemplated with g7 is the fact that we're going to go to more people. And we're going to go to more people than just the type one population, we plan on having capacity to build over 200 million sensors, before the end of 23 200 million sensors, you can be more than enough for the intensive insulin using community. And as far as cost will cost comes down, if we can sell that much in volume. Now,   Stacey Simms  25:30 you're in the American healthcare system. Kevin, you know, this is not a market based device, we don't, I'm more, I'm more felt like, I'm sorry,   Kevin Sayer  25:39 let me keep going. At the end of the day, as you look at what somebody pays for taking care of themselves with delivering insulin and powering insulin pump, that's a very complex task that requires a lot of customer service and support. If somebody is only losing weight, that's a different problem we're trying to solve, or if somebody is trying to titrate a type two drug, that's a different problem, I think we can find a way to make everybody happy, I don't think we're gonna disappoint anybody. And we planned this company and built this company to make sure that we have capacity to do all this, it's, you know, it is, one would look at me, I mean, we're gonna spend over a billion dollars on these factories over the next two, three years here. This is not a simple endeavor, it is a large investment. And this technology first goes to the community that we serve. Now worldwide, we have to expand worldwide, but get it to the group in the US as well. After that, we'll go the other places, but we're going to have more than enough capacity to do that. In fact, one might question if I'm insane, or we're insane to create so much capacity and the 200 million, quite candidly, the wave design the g7 lines, if we need to sample at a factory, we can do it very quickly. So this is a, this is a long term play for us. We believe this technology be beneficial to a number of people. And so if we can get if we can get all these sensors out there and all these uses, I think it'll be it'll benefit your audience while it'll detract from   Stacey Simms  27:00 I know, we're going to run out of time. I've got two more questions. You've mentioned,   Kevin Sayer  27:03 you got them all give you time for two questions. Let's finish. Alright, here's what you want.   Stacey Simms  27:09 You mentioned already, lots of different apps are being developed not all diabetes. You know, a couple years ago, Dexcom announced the availability of the API, you know, developers can get data through third party apps. I'm curious, is there anything going on maybe behind the scenes? Or are you doing anything further to kind of foster more innovation in the early stage, like the development of other companies? Or is that a thing of   Kevin Sayer  27:30 the past? No, I'll give you two things that we're doing. Number one, we have a live API use where you can have a live display of the data that's on file with the agency right now, it'll eventually get approved. So you'll be able to run the Dexcom app, did it go the cloud comes straight down to another one. I think that is a very good use of the technology. And it shows our willingness to work with others. So that is a good use. One of the other things we have coming, then we'll see where it goes. Our intended use case in the beginning was with major healthcare systems. But we have another app that we've shown pictures of it's an app inside an app. So let's say for example, you go to scripts here in San Diego, pick scripts, and scripts has their own healthcare app. And they also want to be the center of your diabetes care, particularly for type two diabetes, and they might have you wearing a sensor for something other than isn't delivering, we've developed an app that can reside inside another app, to whereby you can have your scripts experience, but you can touch an icon and you go to a Dexcom experience. And it, it's an app that resides inside the app and for security, we're able to keep others out that app inside the app concept is nothing we've done to commit to others, to give them an opportunity to use Dexcom technology in a different way. And yet preserving create their own experiences. We're very cognizant of the fact that we can't solve every problem, and there might be better experiences. And we can create. Okay, got time for one more.   Stacey Simms  28:54 All right, last question. And it's more of a request. But the question is when you can This is from a couple of listeners, when you start rolling out the g7. any consideration for including and this may be an insurance question to one extra sensor a year. So three and a month?   Kevin Sayer  29:10 What a wonderful question. And let me tell you something, we spend an inordinate amount of time analyzing sensor failure and returns and those types of things. We have run models that say if we give everybody if we just gave everybody x more sensors a year, we could avoid all the phone calls and all of the issues and all that stuff. We analyze this warranty policy all the time. And I think what you'll see with with G7 will have better tools, my hope someday just for your users, I would love to just diagnosis in the app in general, to whereby if your sensor fails, we know when we say your sensor failed, tap on this icon to get a new one. The flip side of that is we have a business to run and we can't do all free centers. So if it comes to the time if you buy 12 months for the sensors, and pay for 12 months for the center's let's make sure you get 12 months where the US If that means we ship you a free one because one failed, that's fine. But we're still, you know, we found one patient in another country, I won't say which one, they got 48 free sensors and purchased all of three, because they spent all this time. Those are the far exceptions from the rule, people will just want care. And so we are doing everything we can to come up with better policies to make it easier for you. because quite honestly, those phone calls cost us way more money. And they cause you guys frustration, we are going to make this better over time. That's a promise I can make. And let's talk about it. In a future conversation. I'll tell you some of the things we've done. All right,   Stacey Simms  30:36 well hold up for a baker's dozen one of these days. But Kevin, thank you so much. You're always very accessible and on there really do appreciate your time.   You're listening to Diabetes Connections with Stacey Simms. Lots more information at Diabetes connections.com. If you haven't seen it yet, a while back Dexcom sent me what they call a sizzle reel of their G7 what it looks like. So I'll put that video in the show notes as well. We have a YouTube channel. I don't put a lot of extra stuff there. But things like that Dexcom video, and the in the news, you can watch it if you'd prefer, I always put that on YouTube. And all these episodes are there as well, although they're mostly just the audio, but a lot of people listen, watch, they listen that way on YouTube. So that'll be linked up in the show notes. And I realized I haven't mentioned it on the show yet. But you know, this time of year getting your Dexcom or getting any gear to stick can be difficult lots of wet and sweat in the summer. And I've created a guide, seven top tips to get your diabetes gear to stick in the hot summer. Over the years, we've tried so many things. Benny has had a pump since he was two. He's had a Dexcom since he was nine. So a lot of you know trial and error. And this guide is available absolutely free. So I will put a link in the show notes. If you get the newsletter, you may have already seen it. But just in case you don't. And the show notes are always at Diabetes connections.com. Every episode has its own homepage with a transcription started that in 2020. And we are working our way back. If you're listening on a podcast app, there are shownotes there but in case you have problems with links or whatever, you can always go to the episode homepage. And as I mentioned, Diabetes Connections is brought to you by Dexcom. It is hard to remember what things were like before we started using the Dexcom I just had when he was nine, right. But he had diabetes for seven years before we started using it. And I guess I haven't really forgotten what that was like. But it's just so different. Now, when he was a toddler, we were doing something like 10 finger sticks a day. And even when he got older, we still did at least six to eight every day more when he wasn't feeling well or when something was off. But with each iteration of Dexcom we have done fewer and fewer sticks. The latest generation the Dexcom gs six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about Benny's little worn out fingertips makes me so glad that Dexcom has helped us come so far. It's an incredible tool. And then his fingertips are healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. learn more, go to Diabetes connections.com and click on the Dexcom logo. As I mentioned at the top of the show, I am at friends for life right now as you're listening. If you're listening as this goes live on the day that it goes out there, I'm traveling to friends for life, and I'll be here for the week. If you're not familiar. This is the largest family diabetes conference in the country. It takes place every July in beautiful Orlando, it's so hot, but it's a great time it's on the Disney World property. I don't usually go to the parks if my kids aren't coming. They they're not coming with me this year. So I doubt I will be going into a Disney park. But it's a fabulous conference. And I just want to let you know I'm doing a new presentation. I'm working up some new stuff. I'm very excited about it. And this one is called reframe your diabetes parent brain. And I gotta tell you, I am really sick and tired of seeing people berate themselves and talk about mom fail and tell themselves how terrible they are as parents. So this is going to be a session where we talk about the mistakes we've made. But then I want to help people reframe them so that they see what they've learned. You know, my whole philosophy is you mess up and you learn. And that's what this is all about. So I'm really excited to try it out. We're like overwhelmed. I don't know. You know, I think so many diabetes parents are so wrapped up in perfect now that they feel like if they go above 120 or 150 that they failed their children. So, gosh, I feel really passionate about it. And we're going to try that. And then for the fall, I've been getting a lot of questions about sending kids to camp, and I've gotten more and more of these over the years. You know, how do I send my type one kid to regular sleepaway camp. So I'm working on a presentation about that because fall, August, September is when a lot of people sign their kids up for next summer. So as you listen if you were affiliated with a group that does meetups or zoom calls, or in person And conferences, let me know I would love to speak to you and start these dialogues and help you really help your kids thrive with type one. We're not done. We're far from done right, Benny 16. But you know, he's a confident and happy kid. So knock wood. Where's all my wood to knock? I say all the superstitious stuff, right? I mean, I don't kid you know how superstitious I am. But I really hope that I can help other parents. You know, the idea here is not that you don't worry. The idea here is that you do it anyway. All right. Thank you so much for joining me. Thank you, as always to my editor John Bukenas from audio editing solutions. I will see you back here in a couple days for the in the news episode, but again, no long format episode, the following. Alright, I'm Stacey Simms until then, be kind to yourself.   Benny  35:49 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Dexcom is going big in their new campaign to get us talking more about Time in Range. This week you'll hear from their most famous spokesperson, Nick Jonas. The singer and actor was diagnosed with type 1 diabetes at age 13, back in 2005. In this recorded webinar, he answers questions about the new campaign and shares some behind the scenes info about his own journey with diabetes. As Stacey says in the episode, for this event, media was invited to send in questions. The organizers selected the questions and they were asked by Melissa Katz, who is credited as host and representative of The Global Movement for Time in Range. The Global Movement for Time in Range is a global consortium of diabetes community thought leaders working together to improve the understanding and accelerate the adoption of time in range as the standard of care in diabetes management. With the support of Nick Jonas, Beyond Type 1, Children with Diabetes, College Diabetes Network, Dexcom, JDRF International and Taking Control of Your Diabetes, the group will jointly address issues to improve the lives of people with diabetes. To learn more about the movement and how to get involved, visit WhenInRange.com. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode transcription below:    Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, a new effort to get us talking more about time in range. Dexcom is launching this campaign with their most famous spokesperson, Nick Jonas,   Nick Jonas  0:35 I would say A1C is a useful piece of data. But as I mentioned before, we're talking about a collection of numbers and you receive that data after a certain period of time, our world and specifically my world on so many people out there moves at such a rapid pace that the more information we can have at the fingertips, no pun intended is really incredible thing.   Stacey Simms  0:56 Jonas answers questions about the time in range campaign and shared some behind the scenes info about his own journey with diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show and oh so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new, my son was diagnosed way back in 2006. Right before he turned two, he is now 16 and a half. My husband lives with type two diabetes. I don't have diabetes, but I have a background in broadcasting and that is how you get the podcast. I doubt he needs this introduction. But singer and actor Nick Jonas was diagnosed with type one at age 13 in 2005. He very famously partnered up with Dexcom in their first Superbowl ad earlier this year, and now he's part of that company's effort to educate about time in range from the news release they sent over Dexcom along with beyond type one and organization Nick Jonas co founded children with diabetes, the college diabetes network JDRF International and taking control of your diabetes has announced the global movement for time in range and awareness and education campaign to improve the understanding and accelerate the adoption of time and range as the standard care in diabetes management. For this event, we were invited to send in questions ahead of time, the organizers selected the questions then they were asked by Melissa Katz, who is credited as host and representative of the global movement for time in range. I sent in three questions. I'll come back after and tell you more about that. And I'll share the one that they didn't use. I will tell you right off the bat. Everybody I know in the diabetes media on that call sent in a question about Nick using his platform to push for insulin affordability and access. quick housekeeping note. Yes, Dexcom is a sponsor of the show, but they don't tell me what to say. longtime listeners are familiar with this. All my disclosures are on the website, Diabetes connections.com. But it's always worth the reminder. And you should know I edited out the very beginning of the session, they played a video about time and range. I'll link that up in the show notes as well. And I edited out the very end where they talked about details for media about getting the audio and some other notes. Other than that it is the full unedited q&a, and we'll hear it in just a moment. But first Diabetes Connections is brought to you by Daario. Health. Over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on my son on Benny, the Daario diabetes success plan is all about you all the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you and for you. Daria is published Studies demonstrate high impact clinical results, find out more go to my daario.com forward slash diabetes dash connections.   Melissa Katz  3:59 So our guest of honor here needs no introduction, especially in his own diabetes community. So please welcome diabetes Rockstar Nick Jonas.   Nick Jonas  4:07 Hello, diabetes Rockstar. That's my official title. Hello, everyone. I'm calling in from Cleveland, Ohio at the moment. So I appreciate your being on excited to talk to you about this global movement for time and range. It's obviously very important to me as a person living with type 1 diabetes since 2005. Now, I guess and I'm excited to be launching this movement for time range alongside Dexcom my partners and leading diabetes nonprofits, including one that I co founded, which was part of that video beyond type one, our goal is to make people aware of time and range and its benefits. And also just you know, I think so many people either live or know someone that lives with diabetes that are just not aware of this and to be able to kind of put this in the forefront and start a conversation around it. And it's an amazing thing for me as a diabetes ambassador and advocate, thrilled to be able to talk to you today and walk you through it all.   Melissa Katz  4:58 Fantastic. So let's get right to it, as you know, the diabetes media submitted questions in advance, so they're on line waiting for those answers. And we're going to start with Matthew Garza from diatomic. He asked, who introduced the concept of timing range to you.   Nick Jonas  5:14 But like all things with my life with diabetes, I rely on my doctor or everything, wonderful doctor, out of UCLA in Los Angeles and endocrinologist there. And we've had a candid conversations. And I think that the thing that really stood out to me was just talking to the benefits. And you know, we talked about in that video, high blood sugars are not ideal and have an effect on day to day life, diabetes, and obviously, lows can be really dangerous, and also have a major effect. The Dexcom clarity app definitely helps me with that, and has allowed me to see in real time throughout the day, my time and range or moments when it's not. And that's the thing to remembers, as a type one diabetic, you know, my main advice to newly diagnosed people is just to take a deep breath, and try to understand that there's going to be days that are unpredictable and harder than the others. And don't get down on yourself for that there are helpful tools and things that make that a little easier. But it is a journey. And once you can keep a positive attitude, it'll be alright.   Melissa Katz  6:11 So that would encourage other people with diabetes to have this conversation?   Nick Jonas  6:15 Well, I think there are a lot of ways, I think we hope to kickstart conversation here, obviously, around the importance, time and range and how it makes people's lives better. And I can speak to that personally, which really has become such an important thing for me to think about that time range and what it really means and not only relying on a one C, which would be your you know, kind of collect reading for two to three months and quarterly reading. This is a really valuable real time tool. And there's there's a lot of assets for people that maybe want more information, want to learn more about this and the impact you can have on their lives with their family and friends lives, when in range calm is a good one, obviously, and other social media tools and links that we'll share with you later. But a lot of good conversation starters out there and thrilled to be able to help in that process.   Melissa Katz  7:06 That's a great way to segue to Jessica apples question. She's from a sweet life. And she's asking, we know CGM is a great way to monitor time and range. But what's the best way to achieve time range in your opinion?   Nick Jonas  7:19 Well, everyone's journey with diabetes is different. And so I can only speak to mine. For me, it's a combination of obviously relying on my doctors kind of input and real time changes that we make to, you know, my life with diabetes as a whole one. And part of that is physical activity. Diet is a big aspect or just meal management and kind of understanding what's serving my body. And a lot of ways because I live such a crazy lifestyle, I think of myself more so as a an athlete in some settings and kind of prioritizing, living a healthy life with my diabetes, but also wanting to perform my best. And so there's, there's a combination of things that come into play there. And one of the other aspects is obviously, knowing where my glucose is a real time. And Dexcom definitely helps with that pretty obvious. And you know, I'm, like everyone else in the world person that looks at my phone way too much. And so having that information, right there is really helpful. Again, that's just my kind of personal, customized journey. And it's, as I said, a combination of all those things, but for everybody out there, it's gonna be different and you got to figure out what works for you. But having a bunch of tools in your toolbox is a helpful thing. And so that's probably a good place to start.   Melissa Katz  8:31 Alright, so speaking of athletes, it was a big moment, during the Superbowl to have you up there doing awareness raising and education about CGM. That was pretty exciting. However, there was also some concern afterwards about access. That was a big conversation that occurred which was I think, was a good thing. And Ross Wallen from diabetes daily is asking, CGM can be expensive both in the US and other countries, especially those without robust healthcare systems. And in some countries, it's not available at all. Is there any worry about emphasizing time and range when some people won't be able to access CGM?   Nick Jonas  9:03 I think that very aware all of us on this call and beyond and all the partners, the need for access and that growing conversation and priority for us all in the US and globally. You know, I think that that the exciting thing for us was starting the conversation about awareness in a big way on something like the Super Bowl was a really big step. And so I was thrilled to be a part of that. And thinking back to a time You know, when I was newly diagnosed, if there was someone that I looked up to or admire, who normalized something like diabetes for me on a stages basis, that would have been really exciting, which I think just again, helps the bigger conversation of this need for access around the world. And we have the onsite one are fully committed. We have a wonderful board there that that have been speaking about this a lot and really building a game plan from the ground up and wanting to see that change really happen and do all we can be part of it as well as the other partners I know that are on this call. So it's priority for us, and definitely something we'll work on is. But as you said, the Superbowl was was such an exciting moment, and something that I hope we can do more of taking diabetes to big stages like that. And just normalizing a bit.   Melissa Katz  10:25 Absolutely. So you mentioned A1C earlier, and my classic is with diabetes, mine is asking a when c remains the gold standard for diabetes care, where does it fit in this admission?   Nick Jonas  10:38 Well, I'm certainly not a doctor. I wouldn't even consider myself a diabetes expert, obviously, even though I've lived with this thing now for quite a while and have my days where I feel like I've really nailed it. But I would say A1C is a useful piece of data. But as I mentioned before, you're talking about a collection of numbers and you receive that data after a certain period of time, our world and specifically my world on so many people out there moves at such a rapid pace that the more information we can have at the fingertips, no pun intended, is really an incredible thing. So I think that that time and range shows the trends in real time provides much more complete picture of glucose control over time, which is really a great thing. It's not to say that it's a, you know, one or the other. You know, there's many ways to manage your life with diabetes and enhance your life diabetes, but I think that the more information you have, the better it's going to be. And the more time and range, it just is obviously going to be   Melissa Katz  11:42 better days. You probably know all of our diabetes media or either have type one or have a family member for the most part. And Stacey Simms is a mom with a son who has type one, and she has a podcast called Diabetes Connections, and shows her a little bit more about your personal journey. So her question is, we'd love to hear about how you prepare for and recover from physical days.   Unknown Speaker  12:05 I know you have a lot of those.   Stacey Simms  12:11 Right back to Nick answering my question. But first, Diabetes Connections is brought to you by Gvoke Hypopen . I mean, you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar. And in the case of very low blood sugar, why do we carry emergency glucagon there's a new option called Gvoke Hypopen, the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the gvoke logo gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke Glucagon dot com slash risk. Now back to Nick Jonas, and he's answering my question, actually a listener question about what he does to plan for and deal with very active days.   Nick Jonas  13:05 Yeah, I mean, I have a physical day coming up today, rehearsals and I'll be moving around singing and dancing around all day and all that and, you know, my PrEP is really to try to get good rest, and then start with a good meal, something that kind of sets me up for success with all the necessary protein and macronutrients and other sort of sustaining carbs. And then from there, just about staying on top of it. I like to just kind of frequently check in and see where I'm at and make real time adjustments. Knowing to that, obviously, the physical activity is going to have an impact. And whether it's this thing I'm doing now, or touring, or even just going out for day golf, you know, I'm always trying to stay on top of it and rely on my friends and family to if there are things that I need or if I need a second to take care of something, whether it be high or low blood sugar, then I take the time to do that.   Melissa Katz  13:55 Yeah. All right, as I said, faces a mom. So she's also concerned about your sleep. And she's asking any insight for your routine and how you prepare for sleep. Well, I   Nick Jonas  14:04 think like most people, my routine is basically to watch Netflix. So I get tired and hope that I can just sleep peacefully through the night. That seems to be the routine these days. But outside of that, it's pretty simple. I just, there's a certain range I like to be in before asleep, so that I don't overcorrect. If I'm higher or low that I'm hanging out there too long. I try to kind of target that range. And then obviously, you know, the alarms within the Dexcom really helps well and when I'm traveling I'm not with my wife, I'll share with her and that kind of gives her peace of mind which is a wonderful thing and really helpful tool.   Melissa Katz  14:44 Alright, so we're talking about the Super Bowl and we've heard so many sprays of little kids kind of jumping up and down. So excited to see you on TV. And you are diabetes role model for so many people. I'm curious about who were your diabetes role models when you were growing up?   Nick Jonas  14:58 Well when I was newly diagnosed that there really wasn't a person that I knew of that had diabetes or a role model of sorts, you know. So I think it was a real goal for me to be pretty outspoken when I was newly diagnosed and living a pretty public life, hoping that it would bring people some encouragement and that they would have someone to feel like they're on a journey with and what's happened is in being more open and honest and kind of outspoken about living with type one, I feel like my life's been enriched by hearing stories, feeling encouraged, you know, whether it's watching the superbowl commercial with their friends and family and feeling normalized. All of a sudden, or or, you know, whether a song that I've written I've spoken about this journey has encouraged them, those stories that in turn encouraged me and those become my role models and my heroes, my diabetes heroes.   Melissa Katz  15:52 Alright, so what resources should we be finding people to about the movement? Well, one enraged,   Nick Jonas  15:57 calm is a helpful one, lots of educational resources there. And you know, of course, there's this little thing called social media, it can be very helpful. So hashtag one range, and there will be lots of other assets, I'm sure you guys will share with them. But really, again, excited for me to start this conversation. And, you know, to be working alongside some partners who I know are passionate about, not only this initiative and program, but also doing good in the world and the nonprofit aspect of this the thing that that is most inspiring and exciting to me, outside of the obvious, which is enriching and encouraging people to you know, live with time and range, you know, that which is it's been an invaluable tool for me. So, a lot of positives here and thrilled to be a part of the conversation.   Melissa Katz  16:43 Well, thank you so much for the time this morning. We know how busy your schedule is, and how important the diabetes community is to us. So thanks for making it a priority. Thanks for having me.   Stacey Simms  16:51 You're listening to Diabetes Connections with Stacey Simms. As always more information at Diabetes connections.com. If you can't find the show notes on whatever podcast app you're listening to, you can find him there. If you're new, and you found us because of Nick Jonas, we are coming up to 400 episodes now. And I have a very robust search on the website. So if you want to hear about athletes, or celebrities, or technology, or just living with type one, or even type two diabetes, you can find out more at the website. And please let me know if there's an episode you would like to hear. Listen, I'm really glad they asked a couple of my questions. And they were actually your my listeners questions about his active routine and about sleep. And about his diabetes role models. I've sent that one in too. But the questions I wish they had asked was the one I sent in about access and affordability about insulin editorializing here, obviously, but look, a huge impediment to time and range is the cost of insulin and the supply of insulin, especially here in the United States, where we have mentioned this before one in four people are rationing their insulin, I would love to see Nick Jonas, take a stand on that. I know I'm not alone, boy, he could really make a difference just in terms of public education. So you know, we'll look we'll keep pushing, we'll see what we can do there. But I do appreciate you sending me those questions. Diabetes Connections of the group is where I do most of my communication in terms of you know, getting listener questions, finding out what you want to know more about. So please join Diabetes Connections, the group on Facebook if you haven't already. Alright, and as I have said, Dexcom is a sponsor of the show, and we have been using the Dexcom system since Benny was nine years old. We started with Dexcom back in December of 2013. And the system just keeps getting better. The Dexcom G6  is FDA permitted for no finger sticks for calibration and diabetes treatment decisions, you can share with up to 10 people from your smart device. The G six has 10 day sensor wear and the applicator is so easy, I haven't done one insertion since we got it Benny does everything himself. Now he's a busy kid, knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is reassuring. Of course, we still love the alerts on the alarms, and that we can set them how we want if your glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Before I let you go, just a reminder that every Wednesday live on Facebook, I'm doing in the news. It is a five or six minute roundup of all the headlines and news in the diabetes community of the past seven days that's live on Facebook at Diabetes Connections, the page and that's 430 Eastern on Wednesdays and then we turn that into a podcast episode. You can find it on Instagram and the YouTube channel as well. I'm having a lot of fun with that. And I'm working on my set on my studio. We'll see I have a green screen. You know we're working on some lighting. I don't know. It could look great. It could look very silly. I'm sure you will let me know. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then be kind to yourself.   Benny  20:11 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

The PROTECT Study is testing how well an investigational medicine works in children and teens with type 1 diabetes. The hope is that this drug, called teplizumab, would help people continue making more of their own insulin and reduce the need for injections, have better glucose control and/or fewer complications of T1D. To enroll in the study, you need to be within six weeks of diagnosis. That's a tough time to make a big decision like this. We caught up with the Lahners family - 16 year old Alex just marked one year with T1D and he's spent almost that entire year in the PROTECT study. He and his father talk to Stacey about the decision to take part and  what happens during this trial. Alex doesn't know whether he got the drug or a placebo, but he's only using six units of insulin or less a day! Info on the PROTECT study - including how to enroll Previous episode which included information on PROTECT In Tell Me Something Good  - A big achievement for one of the first families Stacey found in the online community. ThisIsCaleb is a high school valedictorian! Learn more about Medicare coverage for Dexcom: www.dexcom.com/G6-Medicare This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode transcription below:  Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, imagine being newly diagnosed and having to decide right away whether to take part in a clinical trial. The protect trial is for kids and teens and needs to start within six weeks of diagnosis. Alex Lahners agreed to do it.   Alex Lahners  0:42 I know that I don't want future people getting diabetes. And I didn't want anyone I knew to get diabetes. So I ultimately was like, I'm not just going to do this for myself. I want to do this for other people who are in the future going to be diagnosed.   Stacey Simms  0:56 Alex is 16 he was diagnosed last year, he and his father talked to me about the decision to take part and what happens during this trial. And tell me something good. A big achievement for a kid I've never met but feel like I've known forever. One of the first families I found in the online community. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. Always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed with type one right before he turned two. That's 14 and a half years ago. Now. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast. I told you a couple of weeks ago, I had a meetup It was my first in person parent meetup since COVID. I used to do these things all the time. And I've done them for years, I run a large parenting Group here in the Charlotte, North Carolina area. And it felt so good to see people again and have these meetups. But what was amazing, and this is what I told you about is that two of the families, newer diagnosed already have their kids in clinical trials. And we live in Charlotte, which is not where a lot of these take place. So I was really impressed. And I think that obviously speaks to the access that we have. We have fabulous endocrinology groups. And we have really great outreach programs from JDRF here in our area. But I think it also speaks to the availability of these trials. These were not happening back when my son was diagnosed back in 2006. And I covered one of these trials though, and we're going to talk about today. I talked about this briefly in an episode a few weeks back with Dr. Henry Anholt from prevention, the group behind the protect study. And here's what he told us at the time. If you missed that episode, I will link it up. But in a nutshell, the protect study is involving about 300 children and adolescents. They're in clinics across the US, Canada and Europe, you have to be eight to 17 years old, you have to be diagnosed with Type One Diabetes in the previous six weeks. So as I said in the tea's it's really quick, you got to know you have it and get in here to the study really quickly. You have to be positive for one of five T1D auto antibodies, you have to produce a minimum of your own insulin, they do those two tests as part of the study. And then you need to be otherwise generally Healthy Kids in the study are placed into one of two treatment groups, two thirds of the participants will get the actual medication here and 1/3 will be assigned to the placebo group. It's decided at random and the medication in this is decided at random and it is blinded which means nobody not your child, not you not the doctor will know what group you are in. And the medication is going to sound familiar it is teplizumab This is the medication that we've been talking about for several years. That is in many trials that is in front of the FDA right now, as a prevention for type 1 diabetes. It's been shown to prevent the onset for a couple of years. This is a little different, though, right? This is using teplizumab in kids who are already diagnosed, seeing if they get it right away. What happens. So the Lahners family was kind enough to talk to us about their experience here and I'm going to go ahead and sort of spoil the ending because I was amazed by this. Alex is Benny's age he is 16 He is not a small kid, and he is using about six units of insulin a day, a day a day. If you're at all familiar with teenagers, it just sounds absurd. We would love to say of course just from that that the city is a big success the medication works for Get Out Of course, you know, quick look, they don't even know if he was actually in the the part of the group that got that to close him up. He could have gotten the placebo and I guess be in a very long honeymoon be a really exceptional case. I don't know. We will talk about it in just a moment. But first Diabetes Connections is brought to you By Gvoke Hypopen.  our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon Gvoke Hypopen pen is pre mixed and ready to go with no visible needle, you pull off the red cap and push the yellow end on to bare skin and hold it for five seconds. That's it, find out more go to Diabetes Connections dot com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk. Alex and Jeremy, welcome to the show. Thanks for joining me. Thanks for having us.   I'm really excited to learn more about your story. You know, it's it's interesting at the same age as my son, but very different circumstances before we get to the studies and to play the map and all that stuff. Jeremy, let me start with you. Tell me the diagnosis story. How did you know something was going on?   Jeremy Lahners  6:03 Well, it was a, it was a warm summer night almost almost a year ago. Now, we had noticed over the course of really a couple of weeks that Alex just was not feeling well. And he's always done kind of a good job of hiding some of his symptoms from us a little bit. And he had just not been feeling well. He was drinking a lot of water and was sleeping a lot. Probably the sleeping was the thing that we noticed more than anything. He just wanted to sleep all the time. Now, school had just ended maybe a week or two prior to this. And a lot of what we saw as symptoms we really chalked up to a teenage kid wanting to just be left alone. Now that school was done and wanting to sleep all the time. So we we sort of wrote a lot of stuff off, we did take him in because he had had indicated he had some symptoms kind of leading up to some of all of this. And our doctor at the time, based on the way that we described things really thought that it was allergies. And so we started allergy medicine, then the day before we took him to the hospital, we just noticed that he was really looking thin. And he's a wrestler, he has lost weight over the course of the many years that he's been wrestling and so we know what weight loss looks like for him. But this was very unusual weight loss. And so I actually asked him to weigh in that evening, and he had lost over the course of about a four week period he had lost about 30 pounds. And as 150 pound kid at the time, you know, losing 20% of your body masses is a lot. The next morning, he got up and he just he looked like a ghost you know, fail thin. And   Stacey Simms  7:53 Alex, do you remember how you felt?   Alex Lahners  7:56 I vividly remember all of this. I remember when it first started happening like that said I was drinking a ton of water. And it really just felt like my tongue was constantly sandpaper. And I would pour like, I pour water into my mouth and it would just wouldn't go away. And I was just drinking so much water. I think my water intake like quadrupled, or more. And it was really odd. I've never loved drinking water. But I think that was the first time I was like, Oh my gosh, give me all the water I can have.   Stacey Simms  8:29 What did you think when you got on the scale? I mean, 30 pounds is extreme. I   Alex Lahners  8:34 knew that I was losing weight. I knew that I'd lost weight and you know, every sickness you sometimes you just lose weight. But when I got on the scale, and I think I said I was at 134. And I had previously weighed in like 160 something. Yeah, I was that's not right. I remember weighing myself a second time, just to make sure. And it came up with the same number. And I was like, it's I went downstairs I told my dad I was like it says I'm 134. And we couldn't believe in I remember everyone like my mom, my dad and maybe someone else who was there. We were all just like really shocked at how much weight I had lost.   Jeremy Lahners  9:11 Like I said, the next morning he woke up and just look real thin. And so we took him to the ER, we kind of had decided that was that was the line where it just something was clearly off. We didn't know what it was. They ran all of their tests, and probably within 20 minutes or so they came back and said, we're not sure exactly what's going on. But by the way, your son is a diabetic that could Yeah, I mean it was it was very kind of in passing a little bit. And I remember, you know, this was all during COVID. So only one parent could be with him at the time. So I'm texting my wife, and I'm texting her I said they're saying that Alex has diabetes, and she says there's zero chance of that. Tell them to rerun tests because they have no idea Do what they're talking about. They came back in and said, Yeah, his blood sugar is at 588. And that's tremendously high. He's clearly diabetic, we think you should probably take care of this problem. They put us on an ambulance and drove us down to the pediatric hospital in Charlotte. And we spent three days in the ICU, and they were able to get his blood sugar recovered, of course. And it was just a massive, massive crash course in all things type 1 diabetes. At that point,   Stacey Simms  10:31 I didn't really have the opportunity often Alex to talk to you know, a newer diagnosed teenager who actually wants to talk about this stuff. I have to ask you, how difficult was it? I assume in the hospital, they made you do your own shots? And had you figure everything out? You know, what was that like? So give yourself the first injection.   Alex Lahners  10:48 Honestly, when you first get diagnosed, or at least when I got first diagnosed, I got really lucky because I have some people around me who I had known previously, who were type one diabetic, I got extremely lucky with having resources to reach out to and people to talk to, I have always released previously to diabetes, I had always hated needles, shots, I hated everything. But obviously, getting diagnosed with diabetes, you kind of have to learn to get over it. I just kind of put it in my arm. And I was like, this is going to be a new reality for me, and I just accepted it. And I never I don't think I remember feeling any sort of way with how the injection felt or how it made me feel. I think it was just kind of like a, this is how it's gonna be.   Stacey Simms  11:30 So you leave the hospital, you go back to trying to figure out how to do life now with diabetes. But your experience took a turn in that you pretty quickly got involved in a pretty cool clinical trial. Jeremy, how did you find out about the protect study?   Jeremy Lahners  11:46 Well, we sort of jumped headfirst into things, the nurses at the hospital were outstanding and, and gave us all the wonderful material on on jdrf, I reached out to our local jdrf contact to submit Alex's paperwork and material and whatnot. And, of course, that put us on the mailing list of the various jdrf webinars and things that are going on and we follow it on Facebook, join the Charlotte type 1 diabetes parents group, all those types of things, we sort of dove headfirst into all of those resources. Within maybe a week or so I happened to see a webinar about that was upcoming about this protect study. And we thought, well, we should we should at least listen in we we weren't really convinced that it was a great idea at the time. But we figured we're in this now we need to at least listen to what's happening in the space a little bit and try to participate. You know, it was hard enough, sort of coming to grips with all the things coming at us. But we really did want to try to educate ourselves on on the various medical things that were going on. So that was what led us up to listening to the the details of the protect study.   Stacey Simms  13:04 So what was involved? Tell me, you know, we haven't been involved in a clinical trial, much to my son's regret. He's always pushing me to get him in and we just haven't been successful. After all these years, I keep trying. So can you share with us a little bit of the process? Because it's not a local study?   Right back to Jeremy, but first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that is very annoying to me and to Benny. It isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running at a strips, do you need some direction or encouragement going forward with your diabetes management, with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my daario.com forward slash diabetes dash connections. Now back to Jeremy as he starts to take us into their study experience. I had asked him about whether there was a local site it wasn't a local study.   Jeremy Lahners  14:20 It's not it is a nationwide study. However, the nearest facilities to us were far from local. I think our nearest facility is technically Atlanta. But we had the opportunity during the the webinar they were interviewing Dr. Haller out of the University of Florida. And he was describing this protect study on to plumas AB and we thought it was a good study for Alex the sort of entry criteria for the study. They were accepting children kids under 17 years if I if I remember correctly, who either Were pre diagnosis or had been diagnosed within the last 45 days. So that immediately qualified us, I reached out during the webinar using chat tools inside the zoom to say, My son was just diagnosed, we'd like to learn more. And Dr. Haller reached out to us via email. The next day, we had a zoom call with just him a day or two later. And he talked to us in a lot more detail about how the study goes and and provided some options for us. So that was all the sort of pre work if you will, from there, we did take a day or two and, and we sat down as a family and talked about whether it, it made sense for Alex to participate. Both my wife and I had participated in some medical research studies. When we were in college, there was a paid program at our college, that you could take participation in some of those programs. So we had a background in it. And I think we were both pretty encouraging of Alex to participate in in the study. But, you know, Alex was 15, at the time, and we felt he was old enough and mature enough that he should really make the decision. And so we didn't leave it up to him, maybe with some heavy encouragement. But nonetheless, it was his call at the end of the day. And we would have supported that   Stacey Simms  16:27 Alex had to make the decision. What were you thinking?   Alex Lahners  16:29 So the decision was really, honestly hard for me at the time, I was still trying to get over like, just recently being diagnosed and trying to get everything under control, just to understand what was happening to my body. Ultimately, it boiled down to not only had mom and dad done, I guess, trial before they've done studies before, but I don't think anyone who has type 1 diabetes would tell you, oh, yeah, you should go out and get type 1 diabetes. It just it sucks. It's, it really is not fun. I thought if I would have had someone else 50 years ago, been able to prevent or tell me that I was going to get diabetes and have a drug to prevent the onset of diabetes, I would have taken it in a heartbeat, I would have done whatever it was. And I know that I don't want future people getting diabetes, and anyone I knew to get diabetes. So I ultimately it was like, I'm not just gonna do this for myself. I want to do this for other people who are future in the future going to be diagnosed or are going to be diagnosed later. I guess.   Stacey Simms  17:36 That's really a wonderful sentiment. I mean, Jeremy, I don't need to tell you this. Alex, you're, you know, you're so well spoken and really mature about all of this. So thank you very much for for sharing that. We can be goofy later, I'm sure. So Jeremy, you fill out the forms or do whatever you need to do what happened in this trial. This is not a survey, this is a go to Florida, go to the hospital, get a treatment, what happens?   Jeremy Lahners  17:59 We went down to Florida a couple days early so that Alex could get a COVID test. I think he was the first person in our family to get one of the touch your brain nose swabs. He really enjoyed that, I'm sure. And then we started the study. The study was sorry, the the first part of the infusion was 12 straight days of infusion. Generally, it was anywhere from three to four hours per day. We typically did that first thing in the morning. And thankfully, number one, Alex was at a school so it didn't interrupt school. Number two, my job is flexible enough that I was able to fulfill my work duties in the afternoons and evenings. So it really all worked out for us very much a perfect storm of good, if you will. But for 12 days straight we did the study, the infusion, and that first 12 days was probably the roughest simply because going in you don't know. It's a blind study. So you don't know if you're getting the drug or not. You could be getting the placebo. So there's a lot of trepidation and a lot of do I really want to go through all of this pain multiple times through if all I'm getting is the placebo? We really had a lot of conversation about, you know, what's this going to look like in six months or a year? That was ultimately the study we did, because of the nature of this drug. It is an immunosuppressive. So we did have to quarantine especially again, given it was the COVID times we really had the quarantine. We spent a lot of time in the hotel room just hanging out and like he does Alex slept a lot. That was the two weeks that we spend down there.   Stacey Simms  19:49 Oh, it's was it painful at all? I mean, is it just a blessing? Just I mean, is it just an IV and the pain is just sometimes when you get an IV put in that hurts, or is there more to it   Alex Lahners  19:59 honestly It's really just the IV, they do a great job of like, counting you down, like, they'll be like, Alright, we're gonna put dive in, you know, take a breath 123, and then they'll put it in, I have never had problems with it hurting too much. I still like clench my fist and my jaw when they put it in, because you know, I don't like needles, but it only lasts for maybe 10 seconds at the most. And it is really fast. And once it's in, everything else is super easy. They tape it to your arm, so it doesn't move, and there's no chance of it being pulled out. And they're just super careful when either the placebo or the supplements AB is injected into you. It just felt like there was cold, I would say water running through my body, and you get this salty taste in your mouth. But besides that, that's all I can notice.   Stacey Simms  20:52 Well, and I know. And Alex, as you mentioned, they they're very careful. They're very good. And Jeremy, when you and I spoke previously, you really said that this was a top notch staff, let me just give you a moment to give them the kudos that you had already mentioned to me off air.   Jeremy Lahners  21:06 Sure. I can't go into the details of how good a crew they really are. As much as I love our primary endocrinologist, she does a wonderful job with us here in Charlotte, having the opportunity to spend 12 straight days with an active scientist of the study of diabetes, good or bad than sort of being locked in a room with us for a period of time while they administered the drug to Alex, it really gave us an opportunity as a newly diagnosed type one family to ask a lot of questions for, like I said, 12 days straight. We had access to Dr. Haller, and the other doctors plus all of their nurses and assistants, some of whom also have type 1 diabetes. And we were just able to ask all of the questions that are just reeling around in our heads. And all of them had been through different experiences, or had treated patients with different experiences. And they were just able to answer so so many questions, so many of the fears that we had as parents and I think fears on Alex's behalf as being a newly diagnosed patient were so easily allayed as a result of just being able to spend so much quality time with such good individuals.   Stacey Simms  22:33 What happened after this, you you came home? I mean, I feel like I know the ending to the story. And you're spoiling a little bit in my introduction in that it doesn't seem like you've got the placebo, it seems like things are working out, let's just say very differently for Alex than for a typical teenager, in the first year of his diabetes. Is that safe to say   Jeremy Lahners  22:53 it is? And admittedly we don't know for sure. One of the disadvantages of participating in the study when we did was there's still that honeymoon period that many kids go through and and so a lot of what we experienced very early on was still questioning, are we just seeing the effects of honeymoon? Or are we seeing the effects of this study drug because his his insulin requirements have been very, very low. That really just continued, we would go back to Florida every four to six weeks, and do blood draws and just a quick one day blood draw to test absorption. So no more drug was ever injected. In fact, his next injection is coming up in about six weeks. But again, he just he seemed to stay in what we thought as new parents to be the the honeymoon period. And even today, nearly a year later, that's still where we're at, we're still kind of in this wonderful period where his insulin requirements are insanely low. From what I've heard from other parents.   Stacey Simms  24:02 Let's talk about that. Give me an example.   Alex Lahners  24:05 I currently have heard from my primary endocrinologist that a kid my size and just my age would probably take around 60 to 80 units a day, somewhere around there. I think I am currently sitting at total daily usage of like 6.4 units a day. So that's, you know, a 10th   Stacey Simms  24:28 I don't want to get too personal. But would you mind giving us approximate weight and height? I mean, you're 16 years?   Alex Lahners  24:35 Absolutely. I'm 16 I'm probably around 178 pounds right now and I'm about 510. So generally speaking, I should be taking substantial more amounts of insulin than I am not tiny, though. He's got a small kid.   Stacey Simms  24:52 I'm not even sure what to ask Jeremy and Alex because you without knowing the typical experience. It's I'm not quite sure we know What to ask you in terms I keep, I put it this way. And I'm stuttering around because I can't ask you what's the difference? Because you? Yeah, you don't know. I mean, my son is 16. He's 215 and almost six feet tall, which is great for wrestlers. We know everything about your bodies. We know how big you are, we know tall you are, when you weigh on a daily basis, but you know, and he probably uses definitely 80 units of insulin a day. I mean, it's, it's just remarkable. So how do you treat it? Do you I know you were an insulin pump? Can you use it? I mean,   Alex Lahners  25:30 oh, I do use my insulin pump. But the good thing about my insulin pump is and especially just the T slim in general, is it's all programmable. And you can set it up by yourself. So I have to set my insulin crazy low. And I have to make these crazy schedules. Because when I first got diagnosed, I think I was on a one to five, ratio of units to carbs. And then I hit my honeymoon phase. And my endo backed it off to one to 15. And I was like, Oh, yeah, this is awesome. And I remember I went out and ate like a fast food burger. And I took like, obviously, like a third of the insulin that I've normally taken, I was like, This is great. And then as time progressed, it just kept needing to be moved back, because I would take too much insulin, and I would get low. And I was constantly fighting lows. And I still have that problem today. So there was a time where I was at a one to 100 carb ratio. And I am currently at a one to add carb ratio. And I have to space out when my pump gives me insulin, because if it gives me insulin, like a correction dose throughout the entire day, the amount of insulin that I need to correct is so low that my pump won't let me put it in. So I have to default to the smallest amount which is like point 100 units of insulin in order to correction me down to where I need to be. That's your that's your basal rate. That's my basal. Yeah, so   Jeremy Lahners  27:00 his basal is point one units. And I think right now you're on every other hour. Yeah, every other hour. So   Stacey Simms  27:07 every other hours zero. So you go like a point one and then a 0.0. Yeah, that's amazing. I don't want to get too far ahead of everything here. And Alex, I hope this continues for you, you know, indefinitely. But Jeremy, what is the goal of this study to see kind of how long they can extend this honeymoon or keep these insulin uses low? Or, you know, what is the hope of they expressed it to you? Or do you kind of just take it, you know, month by month,   Jeremy Lahners  27:34 what they described to us very early on was that some of their participants, were seeing this honeymoon period effectively extend for two to three, sometimes even up to four years. That was really kind of the goal. When we started, as we look at where Alex was in his sort of mature ation process. We sort of thought, you know, if Alex could get through high school, and maybe well into college, still on the honeymoon period, that would be a wonderful experience for him, he'd still have the opportunity to do all of the sort of traditional things that you think of without necessarily significantly having to worry about his diagnosis. That was our mentality going in. I've heard suggestions that possibly there's maybe kind of a continuing dose that you can get over the course of, you know, follow on years. But that wasn't part of the study or anything that we did,   Stacey Simms  28:32 they are still looking for about 40 people for this study. This is for new onset, folks with type one. What would you say if somebody's listening, they found the podcast pretty quickly. And they're debating, is this something that you all would do again, because you said it. I mean, there's like I said, it's not as easy as you stay home and take a pill this may involve travel is definitely involves two weeks time and a lot of pokes.   Jeremy Lahners  28:57 Yeah, I mean, looking back, if given the opportunity, again, I would, we would jump on it in a heartbeat. I would say anybody who has the opportunity, and the ability to take the time to do this study, not just the drug itself, but again, the time with the doctors, the combination of those two things is nearly invaluable. So to me that there's no way that that I would turn down that experience again, even if Alex would have gotten the placebo. I mean, ultimately, even if he would have gotten the placebo, he was still gonna end up in the same condition just sooner. So at the very least the time that we got to spend with the doctors has paid for itself trillions of times over. I guess maybe the other thing that's that's worth noting is these are paid studies. So Alex got a little bit of money to spend on his car and turning 16 he he got a little bit of money to spend towards that mostly on gas. So there is some monetary value to it. As well, that's that's worth mentioning. But that wasn't our purpose by any means. It was really the drug and the opportunity to spend time with the doctors would be my two key selling points.   Stacey Simms  30:12 You don't have to go on the record with this question. But can I ask you how much it paid?   Jeremy Lahners  30:17 It paid? I believe it was right in the neighborhood of $75 per day of visit.   Stacey Simms  30:25 I mean, it wasn't $5,000 No, no, I want to be clear when people are you know, we're thinking about it. I wish Yeah. No doubt. It's a lot of gas.   Jeremy Lahners  30:34 They'll spend it. But But yes, no, it's not quite that much. But, I mean, hey, you know, absolutely, yeah. So we go back the end of July. And that will be our next two week visit. We've had a couple of visits since then, about every six weeks or so. We take a one day trip to Florida, just to do checkups. But otherwise, this will be the next big one. And then I think from there, if I remember correctly, I think our next visit is six months afterwards.   Stacey Simms  31:09 All right, Alex, I have two non study related questions for you. Absolutely. How do you keep your gear on when you wrestled? What do you do with your diabetes   Alex Lahners  31:18 stuff? Obviously, that was a really big thing. When I first got diagnosed and learning that you're going to have all this stuff stuck to the side of you, it was like, people are going to grab that when I wrestle. And especially at a high school level, at a varsity level, there is no holding back. If you have a knee brace or anything, people are just going to attack that. That's what I've learned throughout the 12 or 13 years that I've been wrestling, I just was like really worried at the start. But I learned that if I was able to at least keep it close, and you know, tight enough in and you know, obviously you wrestled well, and got off the mat sooner than you wouldn't have any problems. The way that I wrestle with my stuff is I have my Dexcom that's always on and never take that off for any reason. Never even take the transmitter out unless I'm changing the transmitter or changing my sight. For my T slim though, I just disconnected it and I'd put a stop in, I learned that the adhesive is just as good as the Dexcom adhesive. And if I kept it more on my torso every once in a while I'd put it on my legs. But if I kept it more on my torso, because the singlets are just so tight, it just kind of glues everything to you. And I never really had a problem, I think the biggest part was locations as to where you would want to put your stuff. Obviously, if I put it on like the back of my arm, that's a more high risk area, because that's a very frequent place for people to grab while you're wrestling. So I would put it on the upper part of my thigh, kind of closer to my groin or upper groin, and I would just put it in there. And that's where I would leave it. When I put my singlet on, obviously, I'd pull it up. But a big problem for me was writing like the singlet would write up my leg and I didn't want it to pull off. So sometimes I would just pull my singlet just barely above or right on the infusion site so that I could just keep it there. And if it did pull up, it wouldn't pull my site off.   Stacey Simms  33:20 Do you use anything to wrap it but or anything or everything just kind of sticks, okay, because of your locations. Generally,   Alex Lahners  33:26 I only use like over patches, I use like two Dexcom ones. And I think we had some like aftermarket ones, whenever the Dexcom ones would run out, unless it was like on my arm or something of the sorts, I wouldn't wrap it. But if it was on my arm, or I just didn't have any other choice, and it was in a very vulnerable area where I felt like it was about to come off. I would always wrap it with just some like simple athletic gauze. And then I put some athletic tape around it. And that always seemed to hold it. I also have a little like sleeve that I use for swimming and I guess for sometimes athletics, and I just would slip that on over it. It was like a dry fit sleeve. And that worked perfectly to   Jeremy Lahners  34:08 we did wrap your leg the first couple of times, but really, we found it wasn't necessary. So we sort of stopped doing that by the end of the season.   Stacey Simms  34:17 My second question for you was telling me about the socks.   Alex Lahners  34:21 So with Dr. Haller, I learned that we have a very similar passion for extremely crazy socks, because I wrestle I love wearing weird socks because there's only two things that there's three things that you can really change to differentiate yourself from the rest of everyone. It's your singlet, your shoes and your socks. When you're wrestling on a team or just for your school. There's set singlets so the main biggest thing, you can't get to change, you don't get to change it all right. And for shoes, there are some flashy shoes but really sometimes they get extremely expensive if you're going to customize them there. Similar to basketball shoes, so I decided the cheaper option, and the only one that I really had left was socks. So I started a while ago, just getting tons of weird socks and funny socks. I have, you know, pizza socks. Right now I'm wearing these weird math socks that say five out of four people are bad at math. Stuff of the sorts, I walked into the study for this two week study. And on the first day, I met with Dr. Haller, and he noticed my socks, I don't remember what socks I was wearing. Exactly. But he also showed me that he was wearing some like, funny diabetes socks. And from then on, we've just had this competition to outdo each other, even when he's not in the room physically. Like with me, like if there's a different endocrinologist in that day, he will send them pictures of his socks in order to show me to try and one up me, but I like to think that I'm ahead. And if he's listening, I want him to know I will be winning the SOC battle.   Stacey Simms  36:01 Before he let you go. Jeremy, you have said and I forgot to ask you have said that. While he uses so little insulin you do? I guess. I don't know. I don't know if I'm struggling because I was gonna say this is a downside, I guess it is, you guys have still struggled with low blood sugars Is that something that you are still dealing with?   Jeremy Lahners  36:20 It is the struggle that we run into right now is again, because his settings are so low, right now, it's very easy for him to go low. We don't struggle with highs too much at all. And even when he does go a little bit high, he comes back down very quickly. But seemingly every day, I would say almost every day. He has a slight low episode. And and even overnight, you know, we'll we'll have to wake him up sometimes and say, Hey, buddy, you're, you're low, you know, eat some sugar. And he'll groan at us and tell us that we're wrong. But nonetheless, that is probably the one downside that we have seen. And And listen, we'll take that downside all day long. But that has been probably the one downside that we've struggled with a bit.   Stacey Simms  37:09 Alex and Jeremy, thank you so much for joining me, it's great to talk to you it was really interesting was really fun. And, you know, thanks for spending so much time with me and my listeners. Thank you, Stacey, this has been great. And I really should say thank you as well for doing the study. These studies are so important. And Alex, as you said earlier in the interview, people who take the time to do this aren't necessarily helping themselves, but they are helping the people yet to come. So I would be remiss if I wasn't thanking you and thanking your family for taking the time and the effort in going through all of this. So I think I speak for all of my listeners when I say thank you so much for taking part in this study. It's our pleasure.   You're listening to Diabetes Connections with Stacey Simms. Much More information at Diabetes connections.com or in the show notes wherever you are listening. And they are still looking for kids for this study. So I will link up more information. If you know someone who has just been diagnosed if somebody is maybe going through trial net or the jdrf testing for you know a sibling or another family member has type one, and they want to find out if they haven't, this is the kind of thing where they have to get in so early, it's really hard to find people. So they are still recruiting. It was amazing to talk to this family and find out what their experience was like because boy, 16 years old, and using that little insulin really just makes you sit up a little bit straighter. I mean, that would make a very big difference. Gosh, all right, much more to come. And again, you can always go to the website or show notes to find the links, find the transcription and share this with a friends because you never know who might know somebody who could be in the trial coming up. We've got Tell me something good. But first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. And why not it's not as though you stopped needing a CGM, the minute you turn 65 The good news is that the Dexcom g six continuous glucose monitoring system is covered for Medicare patients who meet the coverage criteria. If you have either type one or type two diabetes and intensively managed insulin, you may be covered. To find out more about what that means that if you qualify check out dexcom.com backslash g six dash Medicare. I will link that up with this episode. You don't have to write it down. You're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money learn more again it's dexcom.com backslash g six dash Medicare.   In Tell me something good this week is scrolling through Facebook as one does and a bunch of graduation pictures caught my eye now this time of year of course there's so many beautiful prom and graduation pictures and I'm so happy for all the kids and you know as my kids have And older we've grown up with so many people who are now sharing their beautiful graduations and prom pictures. But I had to stop because Lorraine Sisto posted pictures of Caleb. Now, those of you who had kids diagnosed around the same time as I did or earlier, or kids were diagnosed like 2006 2007. During the heyday of blogging, it really just started. There weren't that many, but it was growing. And man in the next couple of years, there were hundreds of diabetes blogs that so many of us met each other. And now of course, there's 1000s of Instagram accounts and social media stuff, and it's changed and it's still great to connect. But there are some moms and I think you know, who you are, that I connected with in the community and we may have never met I never met Lorraine in person. And as the kids have gotten older, we have kind of communicated to online a lot less. But I have basically watched these kids grow up and Caleb her son was diagnosed just one month after Benny. Benny was diagnosed in December of 2006. Caleb was diagnosed I think he said, He's obviously a year or two older since he just graduated high school, but he was diagnosed in January of 2007. So we have been in this together for a long time. And I have watched her post these pictures of this fantastic kid and sharing so much information. And so I will link up her blog she hasn't written in a while. But if you have a small child, and you want to see a real go getter of a kid who met Nick Jonas, they just did so many wonderful things. And she shared a lot of great information over the years that's still really relevant. But I'm talking too much because the reason I wanted to share all this is because it Caleb's graduation picture, he graduated as the valedictorian of his class, holy cow. He's going to school for engineering, he is strongly considering biomedical to research type one, I mean, just fantastic. So congratulations, Caleb, congratulations, Lorraine and to your whole family. He's got a brother and a sister and she shared about them as well. I think it's really important to include the siblings too, but so many fabulous graduation stories this year. And if you've ever read this is Caleb or you want to look back on what blogging was all about back in the heyday of diabetes blogging, I will link that up as well. If you have a Tell me something good story, feel free to reach out I might stumble upon on on Facebook again. But you can always find me Stacy at Diabetes connections.com or reach out and our Facebook group Diabetes Connections, the group. Before I let you go, a couple of quick notes on the next couple of weeks are gonna be really interesting on the show, late June, early July, I have some late breaking types of interviews. So stay tuned on social, I'm gonna be posting and Diabetes Connections, the group on Facebook, with the behind the scenes stuff, I don't believe there's gonna be any scheduled disruptions. But you never know. So stay tuned on that some of the stuff is embargoed. I can't talk about it. It's technology news, as you can imagine, and I just want to get it to you as quickly as possible. podcasting is tough that way. It's not exactly an immediate medium, you know, like radio, but I do my best. So I'll keep you posted on that. I will be friends for life. That is July 7 through the 10th. And I'm always excited to go and this year more than ever, just because this is the first for me diabetes conference that I'm going to be going to in person since COVID. I cannot wait and I'm doing a new presentation called reframe your diabetes parenting brain. I will be sharing more about that in the weeks to come. But basically, I do this online anyway, do this in my local group too. When somebody posts mom fail and talks about what they did and how they messed up their kids diabetes, I try to reframe it and show them how they really did a good thing. I mean, he wrote a whole book about it, so why not? And then, as I'm taping this episode, we are getting Benny ready for his trip to Israel. I have talked about this on and off for the last year on this show. Many of you know how nervous I am about this. As you listen as this episode goes live, he has gone he is away he has started his trip. And I don't know that I'm going to get too much sleep. Because while he goes away to camp every summer for a month, and while he's with fabulous people that I trust, he's not with us and He is very far away. So I'm probably not going to speak about it or post about it very much because many of you know me, I'm very superstitious, but I cannot wait till after when he is home and after I hug him. I will see if he wants to talk about how it went diabetes wise and hopefully we can report back. Oh my goodness, I'm you guys know, I'm just I'm so nervous. I'm so excited for him. But this is really hard for me. All right. Thank you, as always to my editor, John Bukenas from audio editing solutions. Thank you so much for listening. We've got Diabetes Connections in the news every Wednesday 430 live on Facebook and then here on the podcast on Fridays. So hopefully I'll see you back here for that until then be kind to yourself.   Benny  44:52 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Big news for Bigfoot Biomedical as the US FDA approves their insulin pen cap system called Unity – which also includes a CGM and an app. CEO Jeffrey Brewer explains what Unity is all about, gives us an update on Bigfoot’s pump system and opens up about his family’s story – his son was diagnosed almost 20 years ago. Plus, in Stacey's first in-person diabetes meetup since COVID, she observed something very interesting about the newer families. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription below:  Click here for iPhone      Click here for Android   Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system.   Announcer  0:24 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:29 This week, big news from Bigfoot - FDA approval for their insulin pen cap system called Unity, which also includes a CGM and an app. CEO Jeffrey Brewer says their bundle approach is a bit like Apple’s   Jeffrey Brewer  0:42 Apple takes a bunch of different pieces, some of which they licensed and some of which they make and integrates them into the most usable package that actually is going to be accessible to the most people. That's the way we think about it as well.   Stacey Simms  0:56 Brewer shares what Unity is all about gives us an update on Bigfoot’s pump system and opens up about his family story. His son was diagnosed almost 20 years ago, plus my first in person diabetes meetup since COVID, where I got good news beyond just seeing my people. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. And when I started Diabetes Connections in the summer of 2015 this week's guest Jeffrey Brewer was my second guest, it is hard to describe what the diabetes technology situation was six years ago. If you were around then you probably remember especially this podcast audience, you know, I tried to talk about it, as I mentioned in the teaser, had a meetup last week with some local parents, which was fantastic. And I'll tell you more about that later. And a mom of a child diagnosed in January of this year asked me what DIY was all about. she'd heard about loop he heard about do it yourself. She wasn't quite sure what it was all about. So that was a long and winding conversation. If you are brand new, and you want to learn more, I recommend searching out the we are not waiting episodes of this podcast. And you can easily search those up at Diabetes connections.com. There's a search box on the upper right. It's a very robust search of our almost 400 episodes now. And you can search we are not waiting as all one word. I've put that in all of those kind of DIY open APS CGM in the cloud. You know all of those types of episodes. I know that six years ago, this pen cap system is not the Bigfoot FDA approval many of us thought would come through First, if you've been following this story for a while Bigfoot was founded in 2014. It was under a different name. It got the Bigfoot name in 2015. But it was founded by a small group of dads of children with type 1 diabetes, including Bryan Mazlish, who got that nickname Bigfoot via reporter looking for the elusive person Bryan who had developed a do it yourself closed loop which his wife and son with type one were using, and the initial headlines for Bigfoot, were all about bringing that closed loop system to market you can go back and see their initial funding press releases, which say things like you know, “the funding will support final development activities for Bigfoot’s Smart loop, automated insulin delivery service, the world's first Internet of Things medical device system delivered as a monthly service.” Bigfoot Unity, which is what we're talking about today is going to launch as that monthly service. It's such a great idea to cut down on the complexity, it's going to help so many people on multiple daily injections, but I know that this podcast audience leans very much into the pump closed loop give me all the tech news group. And I think it's important to acknowledge that that said, My guest is Bigfoot CEO Jeffrey Brewer. His son was diagnosed with type one in 2002 and as the former CEO of JDRF. Brewer led the artificial pancreas project there. In life before diabetes, Brewer founded and led early.com startups including city search and goto.com. We will find out all about Bigfoot Unity in just a moment but first Diabetes Connections is brought to you by Gvoke Hypopen  and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out there are a lot of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar. Gvoke Hypopen is the first auto injector to treat very low blood sugar fever. Gvoke Hypopen  is pre mixed and ready to go with no visible needle. before Gvoke, people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke Glucagon dot com slash risk. Jeffrey, thank you so much for joining me, I really appreciate it.   Jeffrey Brewer  5:05 Thanks for having me. Glad to be here.   Stacey Simms  5:07 So I looked back at my notes, you were my second guest on Diabetes Connections back in the summer of 2015, talking about the big plans for Bigfoot and holistic systems, and then lots of things that you said at the time you couldn't really talk too much about. And now here we are. So first of all, thanks for being my guest way back when when, you know, probably have three people listening, I really appreciate that.   Jeffrey Brewer  5:29 Well, thank you, and thanks for sticking with us maybe took us a little bit longer than I had hoped. But we're finally here to be able to offer something to people with diabetes, that we hope it's going to improve life and make it a little easier.   Stacey Simms  5:43 Definitely. Well, let's talk about that. So we're talking about Bigfoot Unity, would you mind kind of going through who it's for what it does, this is a system that is going to help people who are on multiple daily injections. So what is big for Unity?   Jeffrey Brewer  5:57 Yeah, so as you know, had Bigfoot developing a range of solutions to help people whose lives are dependent upon insulin to live safely and, and hopefully better lives. We are in this journey, focusing first on multiple daily injections, basically, intensive insulin therapy, once a day, have a basal insulin, and then given shots at mealtimes, or for corrections of rapid acting insulin, that particular therapy, which about 3 million people in the United States today do on a daily basis, about half people with type two diabetes, about half people with type one diabetes, but it's really the same therapy, we have developed a system that we believe solves a lot of the problems that therapy has, when it comes to the ability of people to determine the right dose for themselves on an ongoing basis, and also for health care providers to support them in doing so over a long period of time. I   Stacey Simms  6:53 totally understand because years ago, my son wanted to take an insulin pump break, he has used an insulin pump, since he was two, really six months after diagnosis, we got him on a pump. And we were so frustrated. Because not only did we have to do all the math manually that the insulin pump had done, there wasn't. And this was really before, there were lots of apps and things, there was no way to do all the stuff that the pump does in terms of insulin on board, and that kind of thing. So I assume that those are just a few of the features that Unity will provide   Jeffrey Brewer  7:23 some of the things that a pump does BigfootUnity will help to support your right that for people taking shots, it's mostly a glucometer, a piece of paper with some instructions and a couple of insulin pens. There isn't a lot of technology involved in those people's lives right now. And what we've done is develop a package of technologies that includes some devices, and some software that is knitted together for ease of use, to make life convenient for the person to first of all, be prescribed the therapy to be trained how to use the therapy easily and safely, and then to over time be supported by a healthcare provider who has the responsibility of supporting many of these patients, we are bringing technology to a population of people who I think have been largely overlooked, because most of the innovations have been focused on pumps. And that's really been focused on type one and also focused on very highly engaged people with diabetes that frankly, had to do a lot more in order to support the therapy and seen by doctors who are very excited about the technology. But not everybody sees a clinician like that. And not everybody wants to put everything into their insulin therapy that maybe a pump would require.   Stacey Simms  8:42 So take me through a little bit of it if you could, when I looked at it, I was kind of making notes that I wrote white cap black cap. So the white cap is for the fast acting and that gives you a dose, like a pump would say here's the suggested dose.   Jeffrey Brewer  8:56 Sure Bigfoot Unity is a bunch of different things together at the centerpiece of the system is these taps that are going to be for the particular insulin that a person is prescribed, whether it is an insulin made by Novo Nordisk or Sanofi or Eli Lilly, we have caps that fit all the different disposable insulin pens for both the basal insulin and the rapid acting insulin. First of all, you get these caps that fit the insulin that you've been prescribed. You also get a couple freestyle Li braise, you get a blood glucose meter that talks to the caps as well. You get in this first time experience kit, everything down to the pen needles and the alcohol swabs that are going to be used for parasite before you put on a sensor, literally everything that you need in order to initiate multiple daily injection therapy with the exception of the Insulet itself. It's all in this box. So this box comes to a person with diabetes in their home. We train them to use the system through a digital interface that we've developed support. onboarding to our system but also for people who are cgmp may never have bought a CGM before will literally through a zoom interface, walk them through the first experience with CGM, and then train them on the whole system. And the centerpiece of the system, as I said, as these caps, which basically do a simple thing they keep track of when you last gave yourself insulin. And they do calculations that are necessary in order to recommend how much to take based on your doctor's direction, very simply on the blackcap, which is focused on the basal insulin, you have one button, and you can only press the button and cycle through screens. So you press the button. first screen says this is when you last took the dose. So it could have been say 23 hours ago, and it's time to take another dose, you press the button again, and it's going to tell you how much you should take. And that's what you were prescribed by your healthcare provider. And what can be updated in the cloud, by your healthcare provider. Rapid acting cap, the white cap is got some additional functionality, but still works the same way. It's got a screen on it, and then you press the button, the first screen is going to have when you last gave a shot, which is particularly important for stacking insulin as you refer to insulin on board. This is one of the big challenges that people who are on shots have is that they don't have a record of when they last took the shot. And so actually making sure that they don't treat the same high glucose reading too quickly, and then end up with too much insulin and end up low. This is something that we help with by actually keeping a person from stacking insulin. So you press this button, it's going to tell you when the last took a dose, if within three hours, you had taken a dose previously, it's going to lock out a correction. And therefore you're not going to make that mistake. This cap also interfaces directly with the freestyle library to or a blood glucose meter, and basically takes that data and directly translates it into a correction dose if you are taking your correction based on again what your healthcare provider had prescribed. So whether it's a correction factor or a sliding scale that was written down on a piece of paper, you don't have to remember or do any calculations, it basically just takes the number from the libri and turns it into here's how much insulin I should take. And if I had previously taken insulin that keeps me from over insulinizing and stacking insulin   Stacey Simms  12:16 over insulinizing? Is that an actual word?   Jeffrey Brewer  12:22 Yeah, I think I heard that from one of the researchers one time, so   Stacey Simms  12:25 we're claiming it if it's not, it's a rage bolus or it’s over-insulinizing   Unknown Speaker  12:29 There you go.   Stacey Simms  12:30 I didn't mean to interrupt you, sorry.   Jeffrey Brewer  12:32 No, no worries, the next step, after you take a correction, maybe you're going to have a meal. And having recommendation for how to dose from mealtime. It actually turns out that small, medium and large is a format that a lot of people are able to understand and work with in terms of how to take carbohydrate content and actually correlate that with an insulin dose. It's actually the minority of people, even in type one, but certainly with type two that carb counts. And so thinking about this in a different way, and a simpler way, where you have maybe small medium and large buckets, and a corresponding number of units for insulin that shows up right on the pen cap. If you want to add the two together, you are going to click the button again. And then it's going to basically add a correction to whatever the meal bolus would be, you're going to pick that value that you're choosing as a patient, because we're not deciding for you, we're just telling you, here's what your doctor would recommend based on all the calculations that you usually would do, if you had to do them. If your doctor were sitting there with you, this is what he or she would recommend you do. But if you know more, because for instance, you know, you're going to be exercising vigorously later, and you want to protect against hyperglycemia a person might decide to take a year or two less. But basically we're going to get them all the information that we can take it and make it actionable for them take as many steps out as we can to just get them to the answer they want. Because I don't actually think people want to know what their blood sugar is. They want to know, what do I What should I do? How much insulin Should I take. And so every step we can remove, and every thing we can take out of this equation to make it easier for people to stay healthy and take the right amount of insulin and then forget about diabetes for another four hours until another meal. That's what we're trying to do. And we're trying to do that for people who take shots, which is most of the world in terms of multiple daily injection therapy is the preponderant therapy for intensive insulin usage.   Stacey Simms  14:28 I appreciate you going through so granularly, I have learned that my listeners really like the deep dive anytime there is something new. So thanks for walking us through that. And you've mentioned the CGM. Let's talk about this. This is all integrated with the Libra when people use the Libra does it alert? Right back to Jeffrey answering my question but first Diabetes Connections is brought to you by Dario health and one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my dario.com forward slash diabetes dash connections. Now back to Jeffrey Brewer answering my question about using the abbot libre here, does it alert an alarm?   Jeffrey Brewer  15:40 Very good question. So the way the library works is it gives data in two different manners. One is you take the pen cap and you swipe it over the library. And it gives you an on demand reading for what your glucose is at that particular moment. And that's the value that is used in order to calculate any corrections. But there's another way that libri is communicating, which is directly through Bluetooth to the smartphone. Because we have an app on the smartphone. And that's monitoring. For instance, for hypoglycemia, you have a couple different ways the library is working in order to support a person with diabetes, it's either directly on demand to make the calculation on the pen cap or go into the phone for monitoring for hyperglycemia. These are particular capabilities of the library to   Stacey Simms  16:27 his delivery that is in big for Unity. Are there any different features? Or is it the same one that people can buy separately?   Jeffrey Brewer  16:34 Well, it's the same libri puck. So the sensor itself, the part that you wear on your body, it's the exact same one that gets prescribed and fulfilled at the pharmacy or wherever else a person gets their lead rays. The difference is that we're not using the reader that avid makes, or the app that avid will have on the phone, the libri in our context is talking directly to our pen caps and to the app on the phone. So it's fully integrated into the system. This is an amazing thing that avid has given us, which is the ability to make it very, very simple for the end user such that you don't have to apps you have to worry about all the training is comprehensively designed such that I learned to use the library and the context Bigfoot system, one training one app, one company that's gonna support the whole system, Bigfoot, and then all the data that gets captured, whether we're talking about insulin data or glucose data, and then made available to clinicians in a unified interface to support them in adjusting the therapy over time.   Stacey Simms  17:38 Well, this may be a really dumb question. I know that the Libra you scan with the phone, when it's separate from Bigfoot in Bigfoot Unity, do you scan with the pen? Or is it just automatic,   Jeffrey Brewer  17:48 it's with the pen, you scan. That's actually the only way you can get right now what's my glucose reading from the CGM is through that NFC interface on the library puck. And one of the key design elements that we felt very strongly about is that you don't have to open up an app on a phone, in order to give yourself a shot. Literally, you're just carrying that pen which you would have with you for meals during the day, it already has the pen cap on it. So you don't carry another device and you're wearing the Libra on the back of your arm, all you have to do is wear the Libra Ray, and then scan that Libra with the pen cap, then it tells you what to do. And no opening an app on the phone, no unlocking the phone, selecting an app opening and navigating through pages, that adds too many steps. And it's frankly, peep something people don't want to do. So we tried to make it as close to what they're doing today, which is you've already got a pen that you're carrying around, we're not adding another device, you don't have to add any additional steps, all you got to do is wear the LIBOR rate and we take that data and then make advice as to what to do.   Stacey Simms  18:54 You know, one of the issues with pens is that they'll switch you insulin brands. So you know the insurance when your will cover human log the next year it wants you to take novolog and the pens aren't the pens different the caps fit and the different pens geoffry.   Jeffrey Brewer  19:08 The pens are different between the different manufacturers. And then some cases from the same manufacturer, you have different designs, different diameters and geometries and clearance for the needles. What we've done is besides designing different pen caps for all the different insulins, we have basically supported this as a service offering. So when you're using Bigfoot, if you didn't buy a pen cap, you are a customer for the entire offering. And if you get switched by your insurance company from humulus, novolog or back, we're just going to send you the new pen cap that fits the insulin that you're currently prescribed, which is we think one of the big challenges that people have and we've heard and we wanted to make sure that that was an easy transition for people.   Stacey Simms  19:54 That's great. And you've already mentioned the way it's packaged, but I'd like to just talk about that. Little bit more I remember. And it was either when we first talked in 2015, or you know, some point very early on that you all were adamant that this was not going to be piecemeal. And you were also going to make it easier for people to purchase things all together. So this is, this is a terrible way to describe it every in my head, I sort of think of those boxes, the subscription boxes, people get right with my kids, it was like, you'd get little fun comic book stuff in them, right, or you'd get a subscription box of exciting bath luxury items. This is obviously not that this is a box with everything in it, right, everything comes together.   Jeffrey Brewer  20:34 That's right, when you first initiate therapy, you don't have to go and get a prescription filled, really braise a prescription field for a blood glucose monitor for test strips for lancets. For pen needles, basically, it's all there in the box. And it's trained and set up in a unified fashion. That frankly, just makes it easier to learn. And it makes it more convenient. And we thought that's an important part of the customer experience. There's a lot of blaming, that takes place of the patient in the world that says, Well, people just aren't working hard enough. They're not doing the things that their clinician told them to do. If they were everything would be better, and diabetes wouldn't be a problem. And frankly, we just don't agree with that. We think that it's too complicated, it's too hard. And that it should be easier. So one of the things that needs to be easier is all the different supplies and getting those and making sure you have the right supply. Having access to the tools is something that needs to take place in order for you to be able to successfully use the therapy, we figure if we make that easier if we make it easier to remember things or you don't even have to remember things because we remind you or we descend them to you without you having to remember all that kind of stuff, I think really adds up to a better experience easier and more convenient use of the system, we firmly believe it's going to end up in better results. Because it's just people are going to do things that are more convenient and easier for them to do. So we make it as easy as possible.   Stacey Simms  22:03 any issues getting insurance and Medicare coverage when it's all bundled like this. I mean, I'm asking is did Bigfoot have any issues getting it? And is it covered for people now?   Jeffrey Brewer  22:13 Why Yeah, there's a lot of innovation that we're having to undertake in order to be able to deliver this to people. One of the aspects of innovation is that we're working through clinics, or endocrinology practices. And this is how we deliver the solution, the clinician will prescribe and then bill for not only the system, but the services of the clinician to use the system and support the system for the person with diabetes. And then when bill comes in, it comes from the clinician. So in order to make this simple, so that there aren't all these different prescriptions. And there aren't all these different places where you have to get all the different pieces, we're working through the clinician. And in this case, there are already codes that are available called remote physiologic monitoring codes that support the treatment of chronic disease and tools in order to support better treatment in chronic disease. And so we're providing these tools to the clinician, and then the clinician basically delivers them through to the patient. And the billing relationship is between the patient and the clinician. All of it gets simplified and makes everybody's life easier. What we're doing is covered by Medicare and private payers more broadly, because we didn't go and get a code for Bigfoot, what we did get is a plan to go and use codes that are already there that clinicians can access in order to reimburse both for what we're providing, and for the services that they have in order to support the effective usage of the system   Stacey Simms  23:46 looking forward, because of course, we can never just let something come out, we always have to see what's next. You know, we talked a lot about interoperability is Unity, going to integrate with different cgms or different systems down the road is that in the plans,   Jeffrey Brewer  24:00 not in the immediate plan, what we did is we said, we're going to pick what we think is the best CGM for what we're trying to do, which is simple, easy, cost effective and very scalable across a large population. And the library has some very unique capabilities that that we feel very much support what we're trying to accomplish. And so we did a deep partnership with avid, as I said, they've given us the ability to integrate their sensor into our system in a way that other systems are not integrated closed loop systems. Today, you have a company that sells you a sensor, you have a company that sells you a pump, they have different apps on the phone that are going to govern, you know their respective products, they're going to be uploaded to clouds that sometimes require clinicians to look into different places to see the full picture for data. We're doing something much simpler. Describe what we're doing is more like what Apple does. Apple takes a bunch of different pieces, some of which they licensed and some of which they may integrates them into the most usable package that actually is going to be accessible to the most people. That's the way we think about it as well. There are other sensors out there and great options for other sensors. We're not trying to say you have to switch to us if you're happy with your other solution. We're trying to go after a population of people who literally don't have any solutions today and are feeling pretty ill served. We think that with all the people out there that are still to use CGM are still to benefit from CGM and the kind of tools we put around CGM. We don't see ourselves as competing with others. We're just trying to get the goodness that we believe we've created out to people who who need it,   Stacey Simms  25:39 I got a question from a listener I meant to ask we were talking about scanning depends. And that was, if a person can still use the the libri, to reader and the librelink app to scan the sensor. Or once you do this, if it is only linked with Bigfoot system?   Jeffrey Brewer  25:53 Well, in order to get the benefit of the system, you need to use the pen caps, because that's where the data is captured. That's where the recommendations get made. And it works best in the context of the Bigfoot system.   Stacey Simms  26:05 So you can't you can't link it to two different things. In other words, you couldn't use the reader and the pen.   Jeffrey Brewer  26:10 Not at the same time, you could use the library separately with a library reader and a librelink. app, but not at the same time.   Stacey Simms  26:20 I'd love to get an update Jeffrey, if you could on what I believe is called Bigfoot autonomy, which was the pump system that we did first talk about all those years ago? Can I ask you what the plan is for that, or what you could share with us about it, it is called Bigfoot autonomy, right?   Jeffrey Brewer  26:35 That is the name that we have picked for it. Yes, autonomy and Unity Unity use for the shots and autonomy is for the pumps, we have, as you know, a pump ourselves, we have developed and done clinical work for algorithms that we have utilized for closed loop insulin delivery. And we've also developed the full package around how to deliver it as a single thing, using a libri. In a very parallel fashion to what we've done with a foot Unity, we had to focus on one product in order to launch the company and to establish ourselves. So we picked this path because we think it gives us the opportUnity to reach the most people most quickly that frankly, don't have other options available to them. And we think we're going to be able to establish a reputation in the marketplace. In the future Bigfoot autonomy is going to complement Bigfoot Unity and present another option for how people can have insulin therapy. That is something we're committed to down the road.   Stacey Simms  27:34 So the people that were very enthusiastic, there's this this whole commUnity that was you know, the DIY commUnity and the we are not waiting commUnity, they should not look at Unity and say, well, Bigfoot has stopped with the pump, right? They shouldn't think that this is not going to go forward. It's not still in the plan.   Jeffrey Brewer  27:51 Well, the plan is always and will remain that we're offering choice and selection of different opportunities for people that have different needs. Just as Medtronic today, in acquiring the companion in pen now realizes it's not about pumps or pen, it's about both, we've been saying the same thing for quite a while, we're just starting with the pens, and then expanding to the pumps, versus everybody else is now interested in pens and started in pumps, it's really the same thing. It's a different way of serving a particular part of the population that has different needs, pumps are great. And they can deliver a lot of value and a lot of quality of life. However, they're not going to be right for everybody. And there's going to be a lot larger population of people who will still take shots for the foreseeable future, especially globally. And so it's not a matter of either or it's both in our minds,   Stacey Simms  28:43 if your son is living with type one for almost 20 years now. And of course, I think most people got familiar with your name when you were at jdrf really pushing the artificial pancreas program. I wonder if you could just take a second to give us some perspective, because I don't know about you. But my son was diagnosed in 2006. And it almost seemed like for the first eight years, maybe even 10 years, there just didn't seem to be that innovation on the commercial side of things. And now, I feel like I know it's it's not there's no cure. I know it's we're not there yet. But I do feel like the technology is finally working hard. You know, we're doing things for my son. And it's not just pump technology, as you said it's pen technology. And I feel like at least he can do a little less work.   Jeffrey Brewer  29:25 I feel the same way. There's been a tremendous amount of progress from 2002 when my son was diagnosed in 2012. There wasn't much of any progress. It has been accelerating in recent years. And I give a lot of credit to jdrf and the work that the volunteers supporting jdrf did to advocate to the executive branch to the legislative branch and then directly to the FDA, we were able to establish a very strong platform for collaboration and the way the FDA has prioritized the innovation in diabetes. enabled it with some clear rules of the road. I believe that's what made it all possible. There has been development of technologies that weren't mature before. But if they didn't have a path through to the marketplace, through the FDA process that worked, we wouldn't benefit from all these things. So it has been a journey. And I think it's been, you know, development of technology. It's been developed in the regulatory practices. It's been greater familiarity and openness amongst clinicians, and also the payers who see value and these tools for patients. So a lot of things that had to change, healthcare is much more complicated and difficult to work in than what I previously did in my high tech career. But it's much more rewarding, because I think it's now having a big benefit and a lot of people and we're happy to join the party, as Bigfootbiomedical.   Unknown Speaker  30:47 Do you mind if I ask how your son's doing?   Jeffrey Brewer  30:48 Yeah, he's actually doing very well with his diabetes, I will tell you that between the ages of like 15 and 22, it was kind of rough. It was a very similar story that I heard from many parents when I was a CEO of jdrf. It's a really challenging condition to live with adolescents and young adults. But he sort of found his way through that, and now has refocused on taking care of himself. And the tools are better now, to enable him to do that. So I think that it's gone hand in hand, his maturation and the development of these tools. And you know, I think he's in a good place. And hopefully, we can make it better over time. You know, it's   Stacey Simms  31:27 funny, I'm not quite sure this is gonna come out appropriately. So I'll try to be careful. But it's kind of nice to free in a way to know that even the head of jdrf. And even the guy at Bigfoot has a kid who was a teen, and struggled. And I know that sounds weird. I don't wish anybody to struggle. Like I wish all the kids went through this, and we're fine. And everybody was the poster child. But I appreciate you sharing that.   Jeffrey Brewer  31:50 It's important because I don't think that people talk about it enough. How hard it is for families, how hard it is for the kids, and how young adults, their brains are just not meant to cope with a responsibility like this. It's just not right. It's not something that they're ready for. And, you know, so nobody should be surprised that it's very hard. And it certainly journey. I think it'd be better if people understood that from the beginning, you know, because some people yeah, you're right, they think it's just my kid that's having this trouble. But it's not, it's that this is really, really hard for any family. And it frankly, is the rare family, where you have just a completely well adjusted and easygoing kid with type 1 diabetes. That's the rarity, not the norm. We're a company that stems from the patient experience, you know, my knee through my son, obviously, it's not the same thing as having it. But you know, having a child that grew up with it, a lot of people at Bigfoot have insulin requiring diabetes and know what it's like to live with this drug. I think it's given us a really great perspective on some of the softer aspects of the experience have been missed by some of the medical device companies, things about making it easier and less stressful and just more convenient. Because when you got to do something every day, multiple times a day for the rest of your life, it's just a different kind of thing. And even small benefits to simplicity can have a huge impact and adding up to much less burden, emotionally or intellectually. And I think that all adds up to better lives. We can't point to any one thing about Bigfoot Unity and say, this is the thing that really makes the difference. It's really a bunch of different things that are really holistically designed to as a system, the sustainable and usable on a daily basis. And I think that's really the future of chronic disease and, and we're glad to be able to help tell that story.   Stacey Simms  33:45 Well, thanks for spending so much time with me. I really appreciate you going through it. And I'm sure we will talk again soon. Jeffrey, thanks so much for being with me.   Unknown Speaker  33:57 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  34:03 Lots more information about Bigfoot. I will link it up in the show notes at Diabetes connections.com. I have been hearing some weird things about Apple podcasts player recently and some of the other apps that feed off of apple. If you're having any trouble getting links, or even listening to the show. Everything you need is a Diabetes connections.com transcripts of every show. And always please get in touch with me I can usually help you find what you need. Because these are pretty information, dense episodes. And if you prefer to read, I want to make sure you get the info. And if the app isn't helping you then we can help you in a moment. Something really amazing about my recent diabetes, parenting meetup, I met some new families and it was really unusual their experience and what they're doing for the rest of us. It's complicated, but I'll tell you in just a minute. First Diabetes Connections is brought to you by Dexcom. And when we first started with Dexcom back in December of 2013, the share and follow ups weren't not an option. They hadn't come out with Technology yet. So trust me when I say using the share and follow apps makes a big difference. I think it's really important to talk to the person you're following or sharing with. Even if you're following your young child, I'm telling you, these are great conversations to have, you know, at what number will you text? How long will you wait to call that sort of thing. That way the whole system give everyone real peace of mind, I'll tell you what I absolutely love about Dexcom share. And that is helping Benny with any blood sugar issues using the data from the whole day and night. And not just one moment, internet connectivity is required to access separate Dexcom follow up to learn more, go to Diabetes connections.com and click on the Dexcom logo.   Okay, it was jumping out of my skin last week, because I had my first diabetes parent meetup since COVID. I think the last one might have been January or February of 2020. Many of you know I run a very large Facebook group for parents of children with type one in the Charlotte area, I think we have almost 1000 people now when we were starting to pull from all over the state because I have come to find out it's a pretty unique group. If you have a local group that you run, or you're part of what makes it unique is mine is based on meeting in person, I try to really stress and set up you know nothing official, I'm not with any organization, I just say hey, let's meet for coffee here, I stress the idea of let's get together in person, let's get the kids to meet let's get the parents to meet. And it can be kind of hard because not everybody I have found is as I don't know if enthusiastic is the right way to put it or pushy or not shy, maybe it's just I'm not afraid of rejection. If I set up a coffee and I invite you know, the whole 1000 people group, and five people show up or one person shows up, I'm still really happy. And I've come to find out that not everyone feels that way. So don't be shy. Just put your stuff out there, get people to come and meet up with you. It will change your life. It really helps me 14 years into it, I think more than anybody else who comes to these things. So I set one up, we only had two people come I'm telling you these things are still amazing. But they were both newer diagnosed families. One had a nine year old daughter diagnosed January of 2021, just this past year, and the other had a 16 year old boy who was diagnosed last summer. And it turns out and I knew this before we met we the kids have some mutual friends. And they're both wrestlers. So Benny knew this other kid as well. But what was amazing to me is that both of these families were already enrolled in clinical trials. And they had been presented with this option. So early on. Now we do not live in an area where clinical trials are present. I mean, I've talked about this on the show before it's we've never been able to get in one. We live in Charlotte, North Carolina, most of North Carolina trials and tests and things are in the Raleigh area over by the Research Triangle, or they're in Virginia, at UVA, or Florida. And that's really the closest to us. So that's where these two families both went for separate trials, both at University of Florida health both I believe at trial net, I may have the exact place but both with Dr. Michael Haller, who we've talked to several times before on this show, one of the kids that the 16 year old is in the Teplizumab trial, the other is in the ATG trial. I'm not going to go into detail on both of these, we've actually talked to Dr. Haller about both of them on the show before. So I will link that up in the show notes as well. But I'll tell you what the ATG trials you've just started. So it's a little too early to tell anything. And of course, this is just with one person. So we should be careful about drawing conclusions. But the 16 year old wrestler, holy cow, so he was diagnosed last year, it's almost a year I believe in In fact, when this episode comes out, it might just be a year. And this is a 16 year old kid. So a teenager who uses probably a lot of insulin, right big kid healthy kid. And I want to say the dad told me that his daily basil is four units. And they're struggling using a pump because he gets such low doses of insulin. They're trying to figure out what to do. Now, who knows, because as I said, it's early on, but it seems to be the thinking that the diploma has really helped make this first year of diabetes, very different than what most 15 or 16 year old kids go through in their first year of diabetes. I'm going to talk to the family. I'll probably circle back around with Dr. Haller again. Because I think that their experience and honestly, it has not been an easy experience. This isn't you know, you go down to Florida, you take a pill you come home, it's a very intense, but brief experience, but they do go I believe, every six months. So I'll tell you more about that as we get there. But I really wanted to bring up with how amazing that these newer families are helping in this way. Obviously they want to help their own children, but they also understand that this is helping the greater commUnity. These are opportunities that did not exist. 14 years ago, when Benny was diagnosed that did not exist possibly, you know, 10 years ago, we have to pull him up in front of the FDA right now. This is really interesting to me, and I know it is to us. You're listening if you're listening this far into the show, certainly, but man and I know I also live in a more affluent area people have more access to health care and to doctors who know about this stuff. But Wow, I was surprised so happily, so To hear that and and to see that their entry into the diabetes community was also an entry into studies that will help everybody you know whether this stuff works or not, it all helps. So I really appreciate it.     Okay, before I let you go update on events, my next event is not in person, we're still on zoom for a lot of us but getting in person for more, which is so exciting. On June 5, I'll be speaking at Camp Nejeda. They have a great event for adults with type one, I will link this up in the show notes. And in the Diabetes Connections Facebook group, I'm talking about telling your story and advocacy. So this is more about how to get the media to listen when you want to talk and also maybe just about blogging and speaking Yeah, blogging still Sure why not in podcasting, and tik tok and Instagram, but talking about your story, and advocacy. That's what I'm going to be talking about there. If you're listening in the Charlotte area, we are doing another D parent meetup. That's This Week. If you're listening as the episode first goes live, it'll be Thursday evening. So drop me an email or hit me up on social and I'll give you all the details. And of course, every Wednesday, Diabetes Connections in the news, join me 4:30pm Eastern Time live on Facebook for a very brief five, six minute newscast about what's going on in the diabetes world, all types of diabetes, and that's replayed on social through the rest of the week. And the response to that has been great. So I am going to keep doing it. I'm having a lot of fun with it. All right. Thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.   Benny  41:40 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

It's getting hot out there and it's vital we keep insulin at the right temperature. However, that's something health care providers say isn’t always front of mind. Stacey talks to Diana Isaacs, a Clinical Pharmacy Specialist and a CDE at the Cleveland Clinic. We’ll get the real deal about insulin temperature and suggest some ways to keep your supply safe. In Tell Me Something Good… glamorous inspiration and a grateful mom – plus babies! And a big anniversary. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out VIVI-CAP www.tempramed.com - use promo code DIACON21 to save 10% off your purchase! (promo code valid through 8/31/2021)   EPISODE TEXT HERE... Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription below     Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:20 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:26 This week, it's getting hot out there a conversation about keeping your insulin at the right temperature. It's something healthcare providers say isn't always front of mind when we're troubleshooting tough diabetes days.   Diana Isaacs  0:39 Why are the blood sugars out of range this day? Why was it in range this day? And why? What's the difference? And this is really one of those pieces to the puzzle. And I think we spend so much of our time worried about other pieces like food that sometimes this really goes neglected.   Stacey Simms  0:55 Diana Isaac's is a Clinical Pharmacy specialist and a CDE at the Cleveland Clinic, we'll get the real deal about insulin temperature and suggest some ways to keep your supply safe in Tell me something good, glamorous inspiration, a grateful mom and babies plus a big anniversary. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. You know, My son was diagnosed 14 years ago, just before he turned to my husband lives with type two diabetes. I don't have diabetes, but I have a background in broadcasting. And that is how you get the podcast. I live in the southeast us in North Carolina. So it has been warming up for quite a while here. But pretty much all over the United States. We are seeing the warmer weather hot summer is coming. Shout out to our listeners in Australia and elsewhere in the world where summer is not coming please save this episode for a few months. But in addition to the advice here, I've got a thread going in the Diabetes Connections Facebook group about what to use not only to keep insulin cool, but to keep diabetes gear holding tight in the summertime CGM and pump sites as you know, tend to slide off in the wetness sweat. So please check that out. Lots of good suggestions. And as I mentioned, in my book, the world's worst diabetes mom, we really like stay put medical to hold stuff on. But I'll tell you in a pinch Benny will just slap a big waterproof bandaid over his Dexcom I really like the clear tegaderm stuff, but I mean he doesn't care yelled us anything and you can find that in a CVS. So if you're off to the beach and you don't have anything, it really comes in handy. Most of the rest of the stuff that's being suggested in that Facebook group thread has to be special ordered either Amazon or the website from the company that makes it okay quick housekeeping note, you will hear my guest mention a product called VIVI cap in this interview and I have a promo code for you if you want to buy it you'll get a discount if you use the code, but I'm not being paid by VIVI cap. Although we are talking about doing something together in the near future. My guest is not a paid consultant for VIVI cap. She really likes the product and they know that and they helped coordinate this interview that said this conversation is about a lot more than one product. So whatever you use, keeping insulin at the right temperature is really important that promo code for VIVI cap is DIACON21, which gets you 10% off the product@temperment.com I'm pretty sure you're not listening with a pen. So I will put that in the show notes and on the episode homepage at Diabetes connections.com. My guest this week is Diana Isaacs, she is a Clinical Pharmacy specialist and the remote monitoring program coordinator at the Cleveland Clinic Diabetes Center. She was the 2020 at CES Diabetes Care and Education Specialist of the year and a Cleveland Clinic. She does have a pretty unique CGM training program. And you'll hear about that during the interview as well. But first Diabetes Connections is brought to you by Dario health. And we first noticed Daario a couple of years ago at a conference and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Daario offers even more now, the Daario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports based on your activity. Find out more go to my daario.com forward slash diabetes dash connections. Diana Isaac's welcome. Thanks so much for joining me. I'm really interested to talk more about this. Thanks for being here.   Diana Isaacs  4:46 Great. Thank you so much for having me.   Stacey Simms  4:48 Or it is getting hot. I know that not everybody lives like I do in the south where it's been hot for a while. But let's start by talking about what you tell your patients.   Diana Isaacs  4:58 Yeah, so many people don't really The storage and the storage of insulin is so important. It's actually very fragile. And if it's not stored correctly, it actually most commonly it loses its potency. So it ends up you know that 10 units of insulin that you inject doesn't work like 10 units to work like seven units, like six units, you just don't know exactly, it's just will not be as potent.   Stacey Simms  5:18 When we're talking about storage of insulin. I know if I leave it in my hot car, and it gets to be, you know, above 110 degrees, it's going to lose its potency, but day to day, just kind of throwing it in the bag or having it with you, how do you need to store it,   Diana Isaacs  5:33 it's recommended any unused insulin pens or vials or cartridges should actually stay in the refrigerator, once it's been opened, then typically, it's good at room temperature for either 28 days, or some of the newer insulins are good up to 56 days, when it goes above that room temperature, that's when you really can't guarantee the potency anymore, and that's when it can break down and it is not going to be as effective. And in terms of Well, what's the danger of that? Well, a you really have no idea how much you're giving yourself. Because like suddenly, you know, what you usually give yourself isn't going to work as effectively. And you know, the real risk or the big risk would be a complication like diabetes ketoacidosis, where you're just not getting enough insulin and that could be you know, a life threatening complication,   Stacey Simms  6:23 what is considered room temperature   Diana Isaacs  6:25 78.8 degrees, it should be it should not go over 78.8 degrees Fahrenheit or 26 degrees Celsius,   Stacey Simms  6:32 you mentioned that the newer insolence can be out of the fridge for 56 days which insolence.   Diana Isaacs  6:37 So specifically, the ultra long acting like tresiba, insulin degludec, and then toujeo, which is insulin collaging. You 300 those lasts a little bit longer at room temperature.   Stacey Simms  6:49 Do you have any idea why I know those are made up a little differently from like, you know, Lantus or levemir.   Diana Isaacs  6:54 Yeah, the you know, they're just, they're made a little bit differently, which allows them to act longer in the body. And that's how they were studied to show that the potency, you know, still really maintains a fact at that point. And I mean, it's good also, because there's larger pens that holds more units. And so you know, that way a person, if they needed it for 56 days could have that the reality is a lot of people with the doses that they're on, you know, will go through a pen, you know, much faster than been 28 days. All right,   Stacey Simms  7:26 we're gonna do some True Confessions here, because I gotta tell you, we have kept insulin a lot longer than 20 days. And we have, and again, I'm not a diabetes educator, and endocrinologist. So you know, I'm just telling you what we have done as you listen, not just for you. But for example, Benny had a vial of insulin, my son that he took in and out of the fridge at school for almost an entire year, it was like a backup. So he would use it if he needed it. And when he was in elementary school, he used like, drops of insulin. It's not like now and he's a teenager. So we would put it in the fridge at the beginning of the school year, and then he would like take it out, use it, put it back in, take it out music, put it back in. Now, I know that's not advised. But it does work. So I mean, how delicate really is insulin, if we can get away with doing something like that.   Diana Isaacs  8:08 So Oh, man, you're burning my ears as a pharmacist? Oh, I hear that. But yeah, I mean, we know that that is reality that people are doing that. I think, you know, as long as it has maintained its room temperature, or refrigeration, probably a lot of insulins have at least close to the near potency for longer. It's just it really can't be guaranteed beyond that point. Because how it studied, I think, where things become different, or when it's exposed to too much heat, like we know for a fact that when it's exposed to high temperatures, or direct sunlight, it mean it loses its potency almost immediately. And if you've ever had you know, the insulin just sitting in the sun and then try to inject it, I I'm willing to bet it would be different. It wouldn't it would not work as well.   Stacey Simms  8:53 Right? And I think with that example that I gave, it never got below the refrigerator temperature because it was out and in so quickly. But I give that example because I know people who once they take it to the fridge, they think that's it. And it's just it was probably out for less than three minutes.   Diana Isaacs  9:08 Yeah. So I mean, that's interesting, right? So it's still you use it, but right, it wasn't out as much. So obviously, it's not ideal. We can't confirm how you know that it's so potent, but it sounds like in your case it was I have seen a lot of situations though, where people use insulin for example, longer in their pumps, like usually we say to change it out, you know, every three days and an insulin pump and people go five days, seven days and a lot of people notice as they go further out from those three days that it seems like they are needing more insulin that it is losing some of its potency.   Stacey Simms  9:39 I will say one of the only times we had an I refer to it very scientifically, skunky insulin. The only time we had skunky insulin was we had come home from summer camp and had unpacked the car but we had not seen like one of the bags kind of worked its way into the corner. And of course that was the bag that had two vials of insulin and two or three days later in our house. Summer car. We this was years and years ago, we used it anyway, of course, it did nothing. It was like sailing, or it was really bad. So that was a realization like, oh, it really does get terrible.   Unknown Speaker  10:12 Yeah. All that precious insulin law. I know. I know,   Stacey Simms  10:17 well, once we know, it's been 14 and a half years, so it happens, it happens. What do you advise patients then to do I mean, obviously, we can change out pump insulin more often. But as you said, Nobody wants to waste precious insulin like that. What are the tips that you give people to keep their insulin cool in the summertime, whether it's in a pump in a vial, that kind of   Diana Isaacs  10:42 thing? Yeah, so I'm a really big fan of something called the Vivi cap. And this is actually can go over like, it can replace the cap of an insulin pen, and you put it on there, and it guarantees that it stays at room temperature, even if it's exposed to, you know, a really hot car, really extreme temperatures, that is something that I've really been recommending for my patients, because it's just, it's a simple tool. And that way, you don't have to stress about like trying to, you know, I see a lot of people trying to get ice packs and things and that, that's risky, because you could accidentally freeze your insulin. So some a tool like the vivie cap, I find is really, really helpful,   Stacey Simms  11:20 you want to take us through a little bit of what it does.   Diana Isaacs  11:23 Sure, basically, it replaces the cap. So essentially, you know, like, let's say you have a novolog pen, right that you're using for your meal time injection. So you would go ahead and you would take off the cap. And instead, you would go ahead and you would put this Vivi cap directly on it, and you would replace that. And then you honestly, you can just throw it in your purse, in your bag, or whatever. And when you want to be sure that the insulin, you know, let's say you were in extreme temperatures, it was in your 100 degree car, and you're not sure if this insulin is going to be effective or not, there's a button at the top of it, and you go ahead and you press it. And if that button becomes green, then you know that that insulin was stored properly, it is a safe temperature, and it is safe to be able to use it if the D button would turn red, that would tell you Oh, there was an issue, the insulin is not safe. Now the good news is the way it actually you know, through a thermal cooling mechanism is actually getting rid of the heat where the insulin is. And so it's saying, you know, keeping it at room temperature. And why this is important also is because a lot of other things out there will make insulin really cold or accidentally freeze it or just make a cold. And really once it's out, and once it's open, it should say every temperature and so this really ensures that it will happen.   Stacey Simms  12:52 That's interesting. So the V cap doesn't necessarily keep it cold. It keeps it like it doesn't keep it refrigerated.   Diana Isaacs  12:59 Right, it's keeping it at room temperature. So it's really meant for the pen that you're using you're actively using. You can throw this cap on you can put it on your long acting and your mealtime insulin, and you can go on a trip, you can go wherever do whatever and it will stay at room temperature.   Stacey Simms  13:17 Here's a dumb question. We don't use pens very often. So I'm curious, do all pins have the same caps would this fit on pretty much any insulin pen   RIGHT BACK TO DIANA in just a moment but first Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar why we carry emergency glucagon? There's a new option called Gvoke Hypopen. The first auto injector to treat very low blood sugar. Gvoke Hypopen  is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. Now back to Diana answering my question about what type of insulin pen fits in the VIVI cap?   Diana Isaacs  14:25 No, that's a really good question. So they actually make different ones for different types of pens. So for example, if you're using like the novalogic products like novolog, and for siba are similar. There's a V cap for those. If you're using like human log products, they have a different Vivi cap. And so yeah, depending on the type of insulin that you're using, you would just go ahead and get the vivie cap that goes corresponding to the one that you need.   Stacey Simms  14:49 It's amazing that until now, I mean we're seeing a few more products address this, but it seems like you know insulin has been around for a long time and you know until recently cuz I've seen a few products like this until recently, the freo is the only thing I can think of that was really out there affordable, you know, easy to use, do you think people are just kind of catching on to the fact that this is really important?   Diana Isaacs  15:11 Well, I think this is just like a really neglected area. Like I spend a lot of my time like analyzing glucose levels, looking at CGM, and in blood sugars and all that kind of stuff. You know, often you're trying to figure out the puzzle. Why are the blood sugars out of range this day? Why was it in range this day? And why? What's the difference? And this is really one of those pieces to the puzzle. And I think we spend so much of our time worried about other pieces like food that sometimes this really goes neglected. And as it's summer, you know, summer is approaching is really a good opportunity to remind everyone that this is a really important for insulin. I mean, this is so so important and will affect it, if it's not stored properly.   Stacey Simms  15:52 It just sounds like common sense. But I'm curious, have there been studies of this? Do we have any idea how many people are having issues with insulin that's not stored properly, or using insulin that has, you know, been out of the fridge for too long? Is there any information on that?   Diana Isaacs  16:08 Well, I don't know, if we have, you know, we certainly don't have like randomized control trial data on that. I mean, how would you do it? Right? I can tell you anecdotally, I think it's just difficult to capture. Because you could ask people I mean, oh, with any person will say that they've had their insulin at high temperatures at some point. I mean, if you, you know, are a human being that goes outside, you know, it's likely that your, you know, your insulin was exposed to higher than room temperature. It's just a matter of how long and I think in the summer, it's really easy for it to, you know, when you meant for it to just be a couple of minutes, that ends up being hours. And then before you know it, you just don't know. And I think also it's difficult to classify, because there's so many reasons that blood sugars can go higher. And so in the moment, it might be hard for someone to be like, Oh, wait, oh, yeah, I was, you know, I left my insulin in the car for three hours. That's why my blood sugar is so high versus they might be thinking, Oh, was it the food I ate? Or am I under stress? So I think sometimes it's just difficult for people to make that connection that it really was the insulin that made their sugars higher,   Stacey Simms  17:11 because I'm kind of picturing people listening to this episode of had diabetes for a long time going, I don't need that. It's been fine. Right? And I'm kind of one of those people that I'm like, Oh, it's fine. I can't imagine this really happening all the time. But you're exactly right. How would we know?   Diana Isaacs  17:26 Yeah, I would just encourage people to reflect on it. I mean, it likely has happened. If you had diabetes long enough, it's probably happened at some point in your life where your insulin hasn't been stored perfectly, right. I am a really big fan of patient choice, and people knowing what's out there. So if you've come up with a perfect solution, or your insulin is always at home, and you never go out great. You don't need something like the Vivi cat. But you know, if you're out you're traveling or going on a trip, I think it's good to know what options exist out there.   Stacey Simms  17:54 I'm curious too. And this is kind of separate from vicap. My son is using insulin pumps since he was two years old. And he we live in the south, as I've mentioned, and it's always hot, the summer is ridiculous. But he has the insulin next to his body. His body is pretty warm all the time. Is there any Are there any issues with that three days in the pump? Do you see people having more issues in the summertime? And do you ever recommend, you know, changing the insulin at more often because of temperature?   Diana Isaacs  18:20 I do. Yeah. A lot of people have issues is especially in the summer. I'm like I've seen people with like Omni pod. And it's just like boiling in the sun. And it goes bad very quickly. So yeah, I am a fan of encouraging people to change more often, like every two days instead of every three days if they notice that it's wearing off sooner. So I think like a lot of people should consider that in the summer if they noticed that third day there. boluses are just not having the same effects on their blood sugar's.   Stacey Simms  18:46 We've also found that winter to summer, we always have to change basil rates. And that's probably because of activity, but it's also because of heat. And I know that that affects people differently. How do you advise your patients to look at the weather and how it affects their bodies?   Diana Isaacs  19:01 That's a good question. I mean, everyone is affected a little bit differently. I really like Adam brown from diatribe. And he talks about 42 factors that affect glucose levels. And actually a sunburn is one of the things that could affect levels, it could increase glucose. So I think, you know, weather can affect it any kind of stressor on the body can absolutely affect glucose levels, but it is very individualized. For many people, the weather won't be a huge deal. But for some they may be more sensitive. And I think the best thing is to really reflect on it to review data with a diabetes educator or diabetes care and education specialist and really try to determine what are the patterns and who knows, yeah, it could be whether it does create a pattern for someone that if you know that it's helpful, because then you can kind of preemptively prepare for it and give yourself more or less insulin as needed.   Stacey Simms  19:52 Can we talk about sunburn for a minute, because every year in the parenting groups, somebody comes in and says it's their first time can the sunburn I raise my kids blood sugar, and everybody kind of says yes, yes. Why is that? Is it just trauma to the body? Is it like being ill?   Diana Isaacs  20:07 Yeah, I think it's like anytime there's a stressor on the body that can affect it. So yeah, if it's causing stress, you know, sunburns can be pretty painful. And we know pain can increase glucose, so it's likely related to those factors.   Stacey Simms  20:21 I don't wanna change the subject too much, but I'm reading your bio. You know, in researching for this episode, he talks about how you run a CGM shared medical appointment program. Can you tell us what that is?   Diana Isaacs  20:33 Yeah, so I am a big advocate of CGM of continuous glucose monitoring. And in our program, we often introduce people to CGM for the first time. And so with our shared medical appointments, we have usually four to six people with diabetes, and we have a meeting. And then we also have a dietician, and it's a two part shared appointment. And the first part, we get everyone together we place the CGM, and we have a discussion about what are the glucose targets and what kind of things affect glucose levels. We also review how to treat high and low glucose levels. And then everyone comes back after seven days and we download the devices and we we actually show everybody's data on a big screen and we go through it together. It's really interesting because a lot of people there, you know, there's similar things like the overtreating Alo or learning you know how oatmeal affects your blood sugar's you know, like, there's a lot of similarities that kind of it's nice to have that group environment. Yeah, that's   Stacey Simms  21:30 I've so many questions, but my first one would be, you'll have to, you'll have to come back on and just talk CGM with us. I'm curious, how do you manage or handle when people are looking at everybody's CGM numbers? And some must feel like, Oh, that's bad? Or I didn't do that very well. You know, do you talk about that part as well, and kind of managing the data mentally.   Diana Isaacs  21:51 So my rule is data numbers are data, and they cannot be good or bad. So it's simply being in target or out of target. But it's not a judgment, there's no such thing as good or bad numbers. And I'm really careful about this. I mean, even you know, when someone is 100%, in range, and has an agency of 6%, I try really hard not to say, Oh, that's so good. Like, you know, do jumping jacks, because, you know, I don't want someone then to have a higher agency and to be less than range and then not want to come back for their appointment because they think I'm only be happy when it's, you know, in range. So it's really an important point to not be judgmental with with data.   Stacey Simms  22:27 Oh, all right. You're gonna have to come back on and talk to us more about that. I think that's,   Unknown Speaker  22:31 I'd love to Alright, good. Good. Good.   Stacey Simms  22:32 All right, back to the summer, though. So since you work with a lot of people with with CGM, do you find that there are ways for people to keep their gear better on in the summer? Do you have any advice for that? Because diabetes technology can be kind of slippy in the summer?   Diana Isaacs  22:45 Yeah, no, it can be. So I'm a big fan of skin tack and of overlay patches, like sin patch, and stuff for keeping on CGM sensors and sites for the pump. I think technique with everything is really important. Making sure the skin is clean and dry. You know, placing it right after a person has recently showered or bathed just to have the most success with it digging and staying on. But I think absolutely using products like skin tack mass assault, for people that sweat, it's just it's like kind of a must to have those extra, those things can really help.   Stacey Simms  23:17 Yeah, we found or at least just anecdotally, everybody's skin is so different that you know, overlays vary brand to brand. So unfortunately, you kind of have to keep trying until you see what works for you. And one of the nice things we did locally when we could meet up and we're going to start meeting up again, which I'm very excited about is I always tell people, like let's bring samples, right? Because you get like a 20 pack of sim patch, and I get a 20 pack of stay put medical patches and you know, people just bring different brands, and then we can kind of trade because I used four or five different brands on my son before we found what worked. So if you're listening and you have a local group, and you're meeting up again, that's just something you can try cuz it's so frustrating.   Diana Isaacs  23:55 Yeah. And sometimes like, right, you put something on over it, and then you know, it starts peeling off after a couple of days, you have to put another thing over it. So yeah, I agree trial and error. You know, we   Stacey Simms  24:05 spoke a lot about the temperature extremes with insulin on the warm end, we touched on freezing, but let's talk about that again. What's the danger of insulin freezing? I mean, we know it doesn't work well. But is there anything to say about that in terms of why? Or you know, is it just that you mean, obviously, if it's frozen, you can't put it in a syringe, but it does completely lose its potency? Right?   Diana Isaacs  24:26 Well, I don't know if it completely loses its potency, but it very much does. But also, I mean, particles may form to which could make it definitely more difficult injecting and then I mean, I guess it could cause pain with injection as well. So I mean, it's just another reminder to like anything, you should really always visually inspect the insulin as well. And most insolence should be clear. So checking for that is really important as well.   Stacey Simms  24:54 Yeah, that's the the hotel refrigerator syndrome. So many times the fridge In the hotel is not set to the correct temperature. So you put your vial of insulin and it freezes. I've heard that so many times. It's just terrible.   Diana Isaacs  25:07 Yeah, I mean, it's really, it's really a problem. And so yeah, I mean, that's a really good point, when you're traveling, it's often really hard to rely on the hotel refrigerator, which is often is not set correctly for temperature is the right temperature,   Stacey Simms  25:21 what we usually do is, if we're staying for more than one night, is we'll put something you know, water, we'll put whatever in that fridge and kind of see how it does in a couple of hours, to see if we trust the insulin. But that's only helpful if you're going to be there for a couple of days, and you have a way to keep your extra insulin, you know, at a cool temperature, because so much of what we're talking about is not even so much for the the insulin you're using at that moment, although you want to keep it at room temperature, exactly. But you know, we don't have to keep it refrigerated. But when you're traveling with extra insulin, that's really a problem.   Diana Isaacs  25:52 I just would encourage people to think about it and just be just plan. I mean, just have a plan for the summer, whatever that plan is. And just be aware that I think some of the traditional methods that people use, like using like a lunch bag and putting an ice pack in it can, you know, you don't really know that temperature that's going to be in there. So there is an option available that you can be assured it's going to stay at room temperature. And it's just it's really simple. And it doesn't take up all this extra space and everything. I think that's the key. It's just it's a super simple thing. And so I would just encourage people to kind of check it out and go to the website and learn more about it.   Stacey Simms  26:34 It's interesting too, because insulins not alone, I mean, so many medications are temperature sensitive, as newer insulins come out, do you think that the temperature sensitivity will ever be factored out of insulin? Or it's just it's just part of the component?   Diana Isaacs  26:51 It's a really good question. Because I I'm sure you know, there's research in this area to see can insulin be more stable, or it's not? I think the problem is, it's just it's a large peptide. And, like due to its nature, it's just really hard to get it to be stable for a long period of time. I mean, it's one of the reasons why we don't have oral insulin, at least not yet. Like we don't have it in pill form. It's just really, really unstable. I think it's going to be challenging. Maybe one day we'll have that. But it's definitely going to be a challenge to   Stacey Simms  27:19 have that. You mentioned the newer insolence, like the longer acting like to CBOE and toujeo. Is that considered an advancement? Or is it just different, it's not going to apply to the shorter acting?   Diana Isaacs  27:30 Well, I think it is an advancement, in that we have an insulin that they were able to alter to work longer in the body, which I think ultimately really helped to stabilize blood sugars. And when you think about like, where we progressed, we started off with NPH, which you know, only works like half a day. And then we got longer act insulins like lantis and lab Amir, and then now we have these, like ultra long ones, like TJ Oh, and receba. And there's actually a weekly insulin that's in development that hopefully will, you know, see in the near future. So I think we're definitely making advancements and insulin, which is really exciting. Although the other area where we need to make advancements, which is a whole other episode is the affordability of insulin as well. But there are definitely advancements that are are being made. So yes, maybe with the storage, those will be things that will get better. But I don't see it completely resolving, you know, anytime soon.   Stacey Simms  28:23 How do pharmacies Sue with this? I mean, as far as I know, we've never had a problem getting our insulin from the pharmacy at the right temperature, of course, then I have to bring it home. And we do a lot with mail order as well and knock on wood. It's always been delivered, I think at the right temperature. Is there a problem from that perspective as well, like in the supply chain,   Diana Isaacs  28:43 know, the supply chain is heavily regulated? So I mean, they are monitoring refrigerators constantly. And they have certain standards, there's inspection so you can feel really good about the supply chain. It's really once it gets to the person that it's not regulated. But yeah, in the pharmacy, it is very, very maintained to a tee to those temperature and they're like specialized refrigerators is not just your it's definitely not your hotel refrigerator that for storing Insulet   Stacey Simms  29:12 Yeah, it's good. That's good. That is good. Before I let you go, I'm just curious. I we have been lucky enough to see my son's endocrinologist in person for the last couple of visits when we did a lot of telehealth. Are you seeing people back in the office? I mean, how are you all doing through all this?   Diana Isaacs  29:29 I never stopped seeing people in the office. So I've been here through the whole pandemic, I've actually come to work every day. Now. A lot of our visits have been virtual out of convenience for people but we are open and people could come here you know, whenever they want. And some For some it's preferred because as much as we've made advances in technology, we you know, we've got some patients who really have challenges downloading their data at home and stuff and it's, it's good to have them in the clinic. So yeah, our doors are open and but I will Say telehealth has flourished. And for a lot of people, it just makes so much more sense. Like today this morning, you know, we trained a person on their new pump. And rather than like me having to have her come in next week, I can just do a virtual and just look at her data that way and make adjustments. That's kind of where we're at with it.   Stacey Simms  30:15 I would imagine your patients have been very happy to walk in and see you during this past year. Like it's very be very reassuring. I was surprised how when we were able to see my son's endocrinologist again. I'm kind of happy we were.   Diana Isaacs  30:29 Yeah, I think it's nice. And I mean, I feel especially now with like the vaccine now that we've all been vaccinated, I feel very, you know, I feel great. It was definitely a little stressful. Like, I'll tell you back in December, we were doing our CGM shared medical appointment. And I had a class of four people and I, you know, you see people starting to like, move their masks down, and you're like, Oh, my gosh, is this safe, like at this stage, because we're doing a class and that was right, when the numbers were really increasing? So we did, we did pause them for a few months till the numbers came down. But But yeah, I think overall, you know, it's good. It has been reassuring. And you know, it's care doesn't stop, like some people are getting new insulin pumps. And yes, while you can get, you could do virtual training. And for many people, we do like some people really want that hands on time, when that was their first time starting upon, they want to come in and see it.   Stacey Simms  31:17 I can't imagine the people who were diagnosed this past year or had children diagnosed and were more isolated than normal. It's isolating enough to have diabetes. And I just can't imagine. So thanks for doing that. And, you know, keeping in touch with everybody, I mean, I'm not your patient. You don't really know me, but I want to say thank you.   Diana Isaacs  31:34 Oh, you're welcome. I mean, I love doing it. I love working with people with diabetes. It's so rewarding. And it's like, I just, yeah, I just feel like I feel very optimistic. With all the new technology and the advances being made. I just feel like, yeah, there's so much opportunity to help people.   Stacey Simms  31:50 Well, thank you so much for spending so much time with me. And we'll have you back on to talk more about CGM and the shared medical stuff. I think that sounds great. Thank you so much.   Unknown Speaker  31:57 Oh, you're very welcome. Yeah, thanks for the opportunity.   Unknown Speaker  32:05 You're listening to Diabetes Connections with Stacey Simms   Stacey Simms  32:11 I’ve  got more information about the temperature at which insulin is supposed to stay. We touched on that. But if you'd like to learn more, and there's some more studies that really delve into this, I'll put that at Diabetes connections.com. Every episode has its own homepage there. If you're listening on an app for podcasts, there are always show notes, but some of them don't show these things very well, you can always come back to the main page, and I'll put it there with a transcript as well. And the promo code for VIVI Cap is DIACON21, like Diabetes Connections, di a co n di a con 21, which gets you 10% off the product. Alright, tell me something good. Coming up help prom photos provided some unexpected inspiration. But first Diabetes Connections is brought to you by Dexcom. So I was watching a movie with my husband the other night, and I got a Dexcom alert and he was upstairs in his room. And you know, for some reason, that took me back to the days when we basically had blood sugar checks on a timer, we would check doing a finger stick the same time every day at home and at school and you know, whatever extra we needed to. But it's amazing to think about how much our diabetes management has changed with share and follow. I didn't have to stop the movie to get up and check him. I knew what was going on, I could decide whether to just text him or go upstairs and help him out. Using the share and follow apps have really helped us talk less about diabetes, which I never thought would happen with a teenager. Trust me, he loves that part too. That's what's so great about the Dexcom system. I think for the caregiver or the spouse or the friend, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow separate follow up required, go to Diabetes connections.com and click on the Dexcom logo.   Tell me something good this week, I don't know about you. I'm in a lot of moms groups. And I have seen a bajillion prom photos over the last month and it's really nice. But one of the things that happened that I didn't expect is that it provided diabetes inspiration to families, especially families with younger kids, I don't have permission to share her name. So I'm just gonna tell you the story here. But this woman posted that she was looking at all the pictures of the beautiful girls and their dresses and their Dexcom and their pumps and their Omni pods showing. And you know, she was excited to see that. But her little girl who's totally into the princess phase right now she's six or seven years old, loved seeing the photos of all these grown up girls with diabetes. And it really provided an easier way to get her little girl to feel better about the gear that she is wearing. And I just thought that after all these years was still kind of unexpected. Now let's be honest, not everybody wants to show their gear all the time. And that's okay too. And honestly, I highly doubt that these girls are going to the prom thinking. I'm gonna have my mom posted. On Instagram or Facebook and that's going to inspire somebody else. Right? But man did it ever. So thanks to all of you who did that, who posted the photos? What a cool thing I have to wish a happy wedding anniversary to Janice and Bill Grigsby they celebrated 50 years married in April. And Janice was cute. I was asking for good news in the Diabetes Connections group and she wrote that may not be what you were looking for, since it doesn't have to do with diabetes. But you know, Janice, we're all together because of diabetes. Janice and Bill's daughter marked 20 years with type one late last year, so I think that counts so congratulations on that amazing milestone. It doesn't all have to be diversities. 50 years married. That is fantastic. And a big congrats to Alison nim Lowe's, who had a baby last week, little Stellan joins Big Brother Henrik is still in it was a little impatient came into the world a little bit early. So he'll be staying at the hospital for a while. And they helped to bring him home by the end of May. But everybody's doing well. Alison is somebody I've known for years. She's been on the show before I will link up that episode. She's on social media as the diabetic therapist Of course, we talked about therapy and mental health in that episode, but congratulations all around really exciting stuff. If you have something good to share, please let me know Stacy at Diabetes, Connections comm or pop into our Facebook group and share when I asked on a regular basis. Just tell me something good. Before I let you go, quick reminder that on Wednesdays in May, I am doing in the news, a live diabetes newscast every Wednesday at 4:30pm. Eastern time. I hope you can join me for that. I'm also turning it around to then putting it out on different social platforms. And on this podcast. That episode right usually has been coming up Thursdays or Fridays. And it looks like we may continue this because people are really liking it. I definitely need to know how you feel about it though. So you can email me comment on the post itself. It's a little bit of different work than the podcast to be honest with you. Not necessarily more work, but I do have to brush my hair and put some lipstick on to go live on Facebook. That's just how I am if I continue this, maybe you'll see me eventually in the ponytail and opaque but I'm having a lot of fun doing it. And I think it's a need. We don't really have a diabetes newscast anywhere. So I may continue. I will be deciding probably between this weekend next week's episode, and I'll definitely let you know. Thanks as always to my editor John Bukenas from audio editing solutions and thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days. Until then be kind to yourself.   Benny  37:42 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

After decades with just one not-so-user-friendly option, another shelf stable rescue glucagon enters the market. It’s called Zegalogue, FDA-approved and coming soon in both an auto injector and a prefilled syringe. One additional future use will be in the Beta Bionics iLet pump with two chambers – one for the insulin and one for this glucagon. Stacey talks with Frank Sanders, President of Zealand Pharma U.S. and Dr. David Kendall, Senior Global Medical Advisor. This interview covers everything from the use of Zegalogue now to cost and a look at how far treatments have come. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription below Click here for iPhone      Click here for Android   Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed autoinjector for very low blood sugar and by Dexcom keeping you in control with an integrated system for diabetes management.   Announcer  0:21 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:27 This week after decades with just one not so user friendly option, another rescue glucagon enters the market. It's called Zegalogue, one future use will be a pump with two chambers, one for the insulin and one for glucagon.   Frank Sanders  0:43 So, with insulin being one side of that equation, when glucose does go lower, instead of simply shutting off the insulin and waiting for it to clear from the system, you have counterbalance, or the ability to counter regulate with the glucagon infusion in small little delivery boluses.   Stacey Simms  1:02 That's Frank Sanders president of Zealand pharmacy in the US, he and Dr. David Kendall, their senior global medical advisor, join me to talk about everything from the use of Zegalogue now to cost and to look at how far treatments have come. And spotting a diabetes pump in the wild never gets old. I'll tell you a quick story about what happened with us. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you all here we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Ben in the state is 14 years ago with type one, my husband lives with type two, I don't have diabetes, I have a background in broadcasting. And that is how you get this podcast. Thank you for the great feedback out last week's not really a bonus episode. But second episode that I've been doing, I changed it up again. And I released Diabetes Connections in the news, many of you have already listened to it. But I'm thrilled that I'm getting reaction. I don't even mind if it's constructive criticism or just I hate it. I really would like to know what you think I'm experimenting throughout the month of May. We're going to do four episodes of in the news live on Facebook first on Wednesdays at 430. And then a podcast episode that will turn around probably Thursday night or Friday morning and get you caught up on the week's news. So please let me know we have a post going in the Facebook group as well. You know, six years ago, I launched this podcast and I liked that I'm still experimenting with it. And I hope that you do too because the idea is just to get you good information that you can use whether it's long format like we're going to do today, or short headlines, like I'm trying with that in the news stuff. And of course we throw in some personal stories here and there. And after this interview, I'll tell you about Benny's first wrestling match and how you know we spotted diabetes in the wild. Alright, my guests this week are from Zealand Pharmaceutical, they just got FDA approval a few weeks ago for Zegalogue. The newest shelf stable emergency glucagon, you know, it really is incredible when you think about it the last 40 or 50 years more than that all we've had for emergency glucagon has been the stuff in the red or orange emergency box, the kind that you have to reconstitute yourself you know, and studies show that most people even those trained you don't use it very well especially under stress. And now we have three options vaccine me and G vo hypo pen and Vega log. You're going to hear from Frank Sanders. He's the president of Zealand pharmacy and Dr. David Kendall. He is their senior global medical advisor Frank Sanders has been in the pharmaceutical industry for more than 25 years. He has been with a company called therapeutics he's been with Johnson and Johnson's pharmaceutical arm many of you are familiar with Janssen pharmaceutical. He's been with GlaxoSmithKline and Dr. David Kendall has held many leadership positions in the diabetes community including at mankind at Lilly at the American Diabetes Association and at the International Diabetes Center in Minneapolis. Dr. Kendall and I also go way off topic toward the end because he served as a clinical investigator with the dcct and edic trials here homeless tourists will remember those evidence based on hope episode, which is one of my all time favorites, I will talk about the DCC T and edic trials at the drop of a hat. And I was so excited that Dr. Kendall can too Okay, quick disclosure gotta tell you, your competitor to this product is a sponsor of this show. In fact, I'm about to read an ad from them. But as you know, Diabetes Connections is here to help you get information about the diabetes community and I don't limit who we talk to because of who spends money on advertising. Now on the flip side, the advertisers are also on board with all of that so I give them a lot of credit to longtime listeners are familiar with all of this, but just in case, I like to talk about it every time and let's keep things on the up and up. Okay, let me tell you then Diabetes Connections is Brought to you by Gvoke Hypopen and our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing, we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be frightening which is why I am so glad there's a different option for emergency glucagon. It's Gvoke Hypopen . Gvoke Hypopen is pre mixed and ready to go with no visible needle, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon dot com slash risk. Frank Sanders, Dr. Kendall, thank you so much for joining me today. I'm really interested to learn more about this. I appreciate you being here.   Unknown Speaker  5:50 Thank you. We're glad to be here as well. Yeah. Thanks so much,   Unknown Speaker  5:52 Stacy.   Stacey Simms  5:53 You got it. So Frank, let me start with you. If I could just, you know, to give us an overview a little bit. We've never talked before, if you could kind of catch me up on what Zealand is all about. And then we'll talk about Zegalogue.   Frank Sanders  6:05 Yeah, sure. Thank you for the question. I appreciate it, Stacy. So I'll start by saying that Zealand is a global biotechnology company and a world leader in peptide therapeutic development. Well, it may seem like a new company, the company was actually founded in 1998. It is headquartered in Copenhagen, Denmark. And we have our US presence and our company in our corporate office in Boston in the seaport area. So the company has approximately 330 employees worldwide. And our we believe our distinguished advantage is our unique peptide platform that allows us to design and engineer highly innovative peptide and peptide like medicines for, you know, for multiple conditions. So we have a 20 year legacy in r&d and peptide therapeutics, and we're very proud of what we've delivered.   Stacey Simms  6:50 Can you take just a second and I when we hear peptide on this podcast, we just think about that C peptide test, right? That helps figure out if it's type one or type two diabetes, what does a peptide therapeutic be?   Dr. David Kendall  7:02 I'm happy to take that one. And Frank, please feel free to chime in. But Stacy, a peptide in the common ones that I'm sure this audience knows about are things like insulin, glucagon, or modifications there. But they are very simply the proteins. In the body peptides generally referred to proteins which are made up of these building blocks we call amino acids, usually up to 25 to 50 of these amino acid segments plugged together glucagon, which we'll be talking about today, and LC glucagon is made up of 37 of these building blocks. So peptides that are commonly known are just those proteins that circulate in the body or makeup, the structure of the body.   Stacey Simms  7:46 Alright, let's talk about Zegalogue. I think most of my listeners are familiar with the concept of needing emergency glucagon sometimes, but tell me the specifics about Zegalogue Frank Sanders  7:56 So the clinical profile Zegalogue  is compelling. And we are actually out in active dialogue with payers right now. And we have been in dialogue with healthcare professionals and patients around the profile through market research before we execute a full product launch following approval. And the approval of Zegalogue is based on the results from three randomized, double blind placebo controlled controlled phase three trials, that's a mouthful in both children and adults with type one diabetes. And what's marketed and notable about Zegalogue is the median time to blood blood glucose recovery of 10 minutes that we've seen across all three phase three trials. More specifically, in the phase three trials. 99% of adults recovered in 15 minutes in the main adult trial, and 95% of pediatric patients recovered and 15 minutes in the pediatric trials. So So we believe the dialogue offers patients and caregivers in an important new choice for the for the management of severe hypoglycemia, which is a condition where minutes obviously matter, so we're eager. So the launch the product, in just over a month and late June,   Stacey Simms  9:02 didn't take me into that study a little bit more in terms of how low people were, if you can share that.   Dr. David Kendall  9:09 Happy to do that, Stacy and as Frank mentioned, glucagon, the native peptide or protein that many people have known about, and I'm sure many of your listeners are familiar with has been around and available for treatments since the 1960s. But what Zegalogue and dasiglucagon the active molecule was able to do is make modifications in that peptide chain to ultimately lead to chemical that we felt was suitable for development that went through those clinical testing programs that Frank talked about, and specific to those trials to bring this forward as a medication that could be reviewed and approved for the treatment of severe little bunch of blood sugar, or what we call severe hypoglycemia required that in controlled fashion, taking volunteers, courageous and really volunteers to whom we are incredibly grateful to use an insulin infusion, so give insulin in their vein in a controlled way, bring their blood sugar below a specific level, usually that level is 70 milligrams per deciliter or lower, slightly higher in the studies with children, and do that in as controlled away as possible, then stop that infusion of insulin. And this is really meant Stacy to mimic what might happen in an unexpected, unanticipated severe low blood trigger event. And those individuals then are given a dose either of placebo medicine, or in the case of these studies, Sega log and its pre Approval Form dasiglucagon, and then in those same trials, not for direct comparison, but just to understand what the world was familiar with, we also gave selected individuals, the traditional glucagon from the emergency kit that many people may know, which is the one that requires that it be reconstituted, mixed up, drawn back up in a syringe and then given so the studies took experimental, low blood sugar, let's say on average, the value is just below 70. Got the dose of medication. And then we measured the so called time to recovery that Frank talked about which in all of these trials was how long it took to see that number no matter where it started to come up by 20 points. So a very consistent measure of recovery time. And as Frank said, the median time to recovery was 10 minutes across each of the three larger phase three trials. And you looked at the 15 minute time point, which is a very important one for watching loved ones recover and making sure that they either are responsive or another dose of medicine can be given 99% of adults, 95% of children had recovery   Unknown Speaker  11:55 in that time period.   Dr. David Kendall  11:56 So very important to understand how the trials were done. But ultimately, it led to our review and approval as a treatment for severe low blood sugar.   Stacey Simms  12:06 Wow, I appreciate you going through so thoroughly, I have a couple of questions, because I have a couple of friends who have gone through clinical trials for products like this. I don't know if they were specifically in this one. But as you said, You don't just sit there and say, Okay, give me all that insulin, no, I'm gonna go low. You know, we really have to thank those people. But you mentioned some of them got a placebo. So I know it was a safe environment. But what does that mean? Like they just sat there and went low for a while?   Frank Sanders  12:32 Yeah, I'm always amazed the Food and Drug Administration, their regulators are thoughtful and cautious about how these studies are designed, we are as well, in placebo, obviously, is done only in a controlled setting where we understand what the potential risks of giving, essentially, no therapy might be. But knowing that in these studies, as I said, Even though zega log is approved for the treatment of truly severe low blood sugar, these were not patients that lost consciousness couldn't manage for themselves, but in a controlled setting where we could give them an intravenous injection of glucose if we needed to, or ultimately rescue them with safety glucagon administration, these were individuals who had to understand that they were going to go low, probably feel something they felt before not necessarily feel comfortable, and then know that there was a chance they were getting just saltwater sailing, or potentially getting one of the other two therapies. And obviously, they were monitored very carefully. And we didn't allow this to go on, you know, indefinitely. They were ultimately treated either with glucose by vain or given something to eat.   Stacey Simms  13:42 I'm curious to, again, I appreciate you letting me go down this rabbit hole. There is an interesting conversation all the time in the diabetes community about letting those go. And I know some of you, as you listen gasped. But I mean, there are some times where you'll sleep through a low or you'll just won't notice although you know, you're 7075 and then you'll, you'll float back up because your liver has kicked in it. You know, I'm curious, I know, this wasn't what the study was designed to do. But was there any information from the placebo folks of them kind of recovering without treatment?   Right back to Dr. Kendall answering that question. But first Diabetes Connections is brought to you by Dario. And the bottom line is you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us with that and that he understands the plan has to change as Benny gets older, you want that kind of support. So take your diabetes management to the next level with Dario health. There are published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one c within three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections. For more proven results and for information about the plan now back to Dr. Kendall, answering my questions about those that kind of resolve on their own.   Frank Sanders  15:13 So the the proportion of people who recovered with placebo therapy was extinguishing Lilo, I will say, at least in the 15 minutes time period, by 45 minutes, either they had recovered or we allowed them to recover. I know a bit more about this, because I spent my early years of research doing these experimental low blood sugar studies. And your comment about letting the logo is not something I certainly would advise as a health care professional, but it does happen. And the risks if it's not a severe low, are often you know, an inconvenience or disrupted sleep or in some cases, complete lack of awareness. The risk there, Stacy is any low blood sugar makes a subsequent low blood sugar more likely. And the typical symptoms and responses that the body has, will diminish when the body has seen multiple episodes of low blood sugar. It's as if the body's saying I've seen this before, I'm going to quit warning you and treating it. And that, as we've learned over time is one of the risk factors for an unexpected and more serious and severe hypoglycemic event. So I would not recommend letting the logo   Stacey Simms  16:24 be either, I want to be very clear. But it is something that is discussed. It's not as though that's something that to be very clear as you listen and to you all to, it wasn't something I said in that I endorse it. It's just that it does happen. And we see that sometimes you don't treat a low and sometimes it bounces back. So I didn't mean to imply that we should be twiddling our thumbs while our kids are low.   Dr. David Kendall  16:48 Right? And you're absolutely right, the body does maintain some of those defenses as ecolog. What we're talking about here is there for those circumstances where the defenses are no longer adequate, someone loses consciousness, the ability to care for themselves. Alright,   Stacey Simms  17:05 let's let's get back on track here. Again, thanks for following me down that rabbit hole. And I'm always fascinated by studies and the process. Frank, let me ask you what so what is this is tell me a little bit about the product itself because we have other products on the market. Now you mentioned already the rescue kit that needs to be reconstituted, there's a nasal spray, there's a shot.   Frank Sanders  17:22 Now this was this is so second log is indicated for the treatment of severe hypoglycemia, and pediatric and adult hit and adult patients with diabetes. Ages, six years and above, we're going to be launching it with two forms available. We're one of those is going to be an auto injector a single dose auto injector and the other will be a single dose prefilled syringe, but both of which can be used immediately without requiring reconstitution that may allow for easier use at that moment when it's needed. And so you know, that really at a basic level, that's that's core to what what Zegalogue is. And we again, believe that based on the clinical study that David David has talked about the study data all three is that what distinguishes like a log is really the the median time to recovery of 10 minutes across all clinical trials and the consistency of response rates and adults in pediatric patients again, referring back to the data that David presented. So we're eager to introduce this product again and a couple short weeks here and offer this begin to offer this to patients and caregivers alike.   Stacey Simms  18:25 shelf life, you know, do I need to put in the fridge? Can you speak to that?   Frank Sanders  18:28 Very good question. So I'll talk a little bit about the storage and stability and David if I if there are details to add, please add but Zegalogue has a three year total shelf life when stored in refrigerated conditions in once removed from refrigerated conditions that can be kept at room temperature for up to 12 months. So stability and storage conditions of Zegalogue provide for options for people with diabetes, you're at risk of severe hypoglycemia to have this available at home, you know, in the refrigerated conditions for up to three years or out of you know, refrigerated conditions, either at home or away from home for up to a year and event that it's needed. So we believe that these dual storage conditions will be attractive to the lifestyle of patients with diabetes   Stacey Simms  19:12 couple of years ago, gosh, was it ready for the pandemic It must have been in the fall of 2019. So not too long ago, I ran into Ed Damiano of beta bionics and asked him you know what's going on? How are things and you know, they've got their own, we're actually talking to them in a couple of weeks. So let's talk about this as well. But my understanding correct me if I'm wrong, is that this is the brand of glucagon that they want to put in the dual hormone pump down the line. I don't know how much anyone can speak to any of this. So feel free to say no, because I know it's it's not coming. Now, this is not what we're talking about here To be clear, but this is one of the most anticipated developments in pump therapy. And I'm curious, can you speak to this is that correct?   Frank Sanders  19:57 Well, let me tell you this and then David, you could you can add to this as well. as you see fit, but yes, I mean that's a glucagon we consider this a platform therapy, you know. So obviously we're launching dasiglucagon in the form of Zegalogue as a rescue therapy for severe hypoglycemia. But it's the first of a long string of other potential launches with dasiglucagon. In the future you had mentioned, the partnership that we have in place with beta bionics that what I will say is that it's a great partnership, we're very pleased with the progress that we're making with this program, as we near the initiation of phase three trials. And so you know, everything is really moving forward at a steady rate there with that partnership. And we also have the David can touch on as well with dasiglucagon a program and place for use in congenital hyper and hyper insulin emia as well. So so the product itself is being studied for multiple applications to benefit multiple patients, not just with severe hypoglycemia, but with other with other specialty and rare disease areas. So it's just the beginning, if you will, it's like a log is this really the beginning for the use of the molecule much, much more to come over the next three to five years. Like Frank said, we're   Dr. David Kendall  21:05 really excited to be in the partnership with beta bionics I had in his team dasiglucagon is the platform and that Frank described, we see it as helping us leverage opportunities across what we call the hypoglycemic spectrum. So testing it, we hope in weeks and months ahead in phase three in the bio hormonal we call it artificial pancreas, the bionic pancreas, with beta bionics, but also for other hypoglycemic disorders, some in the setting of diabetes, like small doses that may be used for exercise or during illness, where it's not an emergency situation, all of these are planned investigations, but not yet part of the approved use of Zegalogue. Similarly, the condition, Frank alluded to congenital hyperinsulinism, where children are born with the dysregulated continuous secretion of insulin, so it's not diabetes, but they suffer recurrent and significant hypoglycemia, then there are very limited therapies. Thankfully, it's an ultra rare disease, but one that is really want for better therapies. And similarly, there are other health conditions where unexpected low blood sugars occur outside of the setting of diabetes. And we think because of some of the unique characteristics that deci glucagon has the stability at room temperature that it can and we hope will be applied, certainly in clinical studies, we hope in the future for patients with some of those conditions.   Stacey Simms  22:38 So it's interesting a couple of weeks ago, maybe a couple months ago, now we spoke to Leo Brown, who was on The Amazing Race, we will he lives with diabetes, I guess, but he has congenital hyperinsulinism. And his they basically removed most of his pancreas. And is that the kind of thing you're talking about where this would be an alternative treatment for somebody like that, perhaps?   Frank Sanders  22:57 Precisely. And so that's one of the approaches, historically to this condition, congenital hyperinsulinism was to remove the offending organ, the pancreas, which, as you witnessed, will leave somebody living with insulin deficient diabetes, so a form of type 1 diabetes that's surgically induced, but it was one of the only available therapies, we feel like that see, glucagon. And other approaches can counteract that hyperinsulinism, particularly in the youngest children, where there are the greatest dangers for these low blood sugars. And we hope either limit the need obviate the need for surgical interventions, and add to the tools that pediatricians in particular can use to manage this incredibly challenging disease.   Stacey Simms  23:45 And just back if I could to beta bionics, can you share anything about Gosh, I feel like we've just been waiting for this for a very long time. In terms of how it works. I know that, again, that's in clinical trials coming up. So you can't talk about a lot, but I'm just trying to picture what I you know, we fill the insulin pump with insulin, then we just fill the other chamber with the gun. I mean, it just to me seems so revolutionary. I'm trying to kind of parse any information that you can share with us.   Dr. David Kendall  24:10 Yeah, it's you're spot on Stacy. It's basically a two chamber pump. So think of how current insulin pumps are programmed. And in fact, with the hybrid closed loop systems, they were tied to continuous glucose monitoring to adjust the insulin delivery and those systems that have that capability. Add to that the same sort of functionality, but with glucagon, or in this case, dasiglucagon infusion that is regulated by the pump and by the glucose measurements. So with insulin being one side of that equation, when glucose does go lower, instead of simply shutting off the insulin and waiting for it to clear from the system, you have counterbalance, or the ability to counter regulate with the glucagon infusion and small little delivery boluses just Like insulin does for higher glucose is so similar to and in fact managed in much the same way as the insulin infusion for high glucose. The glucagon chamber and infusion wouldn't give those doses as glucose values declined, or were at certain levels,   Stacey Simms  25:15 if they're a second inset on the body for that I can't imagine goes to the same inset as the insulin.   Dr. David Kendall  25:21 Yeah, so So all of that is part of the development process. Obviously, these are two separate hormones. And one of the components of dasiglucagon, as Frank talked about is it's, it's stable in this so called aqueous solution, which for you will need that saltwater, the things that circulate in the body. So you know, while in theory, they could come through the same system, the plans in place, and the previous studies have been done with two separate fusion sites. But again, connected to the same pump system. So yeah, there's some sophistication involved. And I think back to pre CGM, when people said I have to wear this device now people often do quite well wearing two devices, their CGM and their pump. So depending on the ultimate design and approach to this, we certainly see the clinical promise as being something that's very encouraging. And then overcoming those engineering and technical challenges will be part of what faces our team with the beta bionics team. Really interesting. I   Stacey Simms  26:22 can't wait to talk to them to to get more information. Thanks for sharing what you could I appreciate? Absolutely. Let's talk about cost and access. What is this going to cost? I mean, I know that a lot of it depends on insurance. You started out by saying you were talking to payers, it's so sad that that's the first thing we have to talk about.   Frank Sanders  26:38 That's a good, it's a good question. These are obviously obviously amongst the first questions we always get when we're launching any product. So so we our strategy, from a pricing perspective, is the price Zegalogue at parity meaning add or are the same as existing products on the market? And we've based this strategy really on the value that psychologic provides? I think you're the bigger question is, is it going to be accessible for patients at launch. And you know, and really, that's, that's the reason why we are out actively engaging managed care customers today, both at payers and pbms, and Medicaid providers. And so I'll share that the the conversations have been have been very good that the profile Tagalog is being received very favorably, and we do expect to have favorable accesses, that is ecolog. At launch, that will continue to build as with any new product launch that will continue to build and improve over the first six months of launch. And I think as as you know, Stacey, from our conversations a little bit earlier, as I'm a caregiver myself, in my in my life, my my wife is been, you know, suffering for from stage four cancer for a number of years, and she's doing doing very well. But we we every day, interact with the healthcare system, and really have to think through barriers to access, whether that those are financial barriers or barriers to delivery of the product through specialty pharmacies, and we are really designing our patient support capability at Zealand. With that in mind, meaning, how do we make sure that when we're launching a product, we're able to provide the resources and forms of financial assistance and other resources to help address any sort of access barriers that may exist. So so there's really don't become transparent, so do we, so to speak, or, or, or a barrier for patients. And it's not just things like financial assistance, we are also putting programs in place to be able to make access easy in terms of product acquisition and distribution, for example, by looking at at home delivery solutions and other things so so we really are going to roll out a patient support system that is really fit for launching a product like this, in this error today where we also have to worry about COVID. So we're ready to go on all fronts in that area.   Stacey Simms  28:50 And we'll link up information as it comes out on patients assistance and access and things like that. But I'm always curious. And I I know the US health system is very complex. But why budget parity, why not launch and say we're gonna be $30? Less? How come nobody ever launches and says we're gonna come out and we're gonna make it affordable out of the box?   Frank Sanders  29:09 Yeah, I mean, we we look very carefully at multiple different pricing options and research it very carefully before we make a decision around it. And the price that we choose, really any company chooses. But in this case, I'll just talk about what Zealand does is the one that we that we think is going to ensure that we are going to get the best access possible for the product at a price point that that is representative of the value, the clinical value that the product brings to the market and that and that really led us to a parody pricing strategy, not a premium pricing strategy, not a discounting strategy, but one that is at parity with the rest of the market. And you know, again, based on the feedback that we've had in advance of setting the price and after setting the price and discussing with managed care organizations, we feel that we got it right.   Stacey Simms  29:56 Yeah, but you didn't get that from patients with all due respect. I can't imagine a patient said that's the right price.   Frank Sanders  30:01 Well, I think if we ask anyone, any consumer about about the price of the medicine, you know, the will will always get the response of, can we why that can cannot be lower? Can it be lower? That's absolutely fair.   Stacey Simms  30:14 Before I let you go, as I was looking through everybody's bio here, David, I can't let you go without asking you about the diabetes control and complications trial and the edic trial, I love to talk about these studies. I have I talked to a lot of parents whose children have been diagnosed, you know, recently, I run a very large Facebook group for Charlotte, North Carolina area. And I always say like, you've got to look at these these amazing trials that were done years ago, that show how much better things are getting. And I would love to just, I don't even know what I want to ask you. But I would love to give you the floor to just say that we didn't even know that a one c mattered, we didn't know the control made a difference. And to me, the edic trial is the one that shows me how much things are getting better. I do my right on any of that.   Dr. David Kendall  30:59 And well, you're talking to a very biased audience of one in me. So I grew up in the dcct edic era, I started in diabetes research in 1981, just as dcct was kicking off. So I've been either close to or seeing patients in dcct edic, through its entire history. And we're now 40 years out from the start of that trial. And yes, absolutely. These are 14 141 of the most courageous, incredible people who committed literally decades of their life to helping us understand what benefits may come from improving glucose control, particularly early on in the course of type 1 diabetes. And what I love is that many of these are patients I know to this day who are celebrating their 17th and 18th birthdays, I'm in the setting of type 1 diabetes. And unequivocally dcct, in my mind is one of the 10 great research studies in medicine, it demonstrated the benefit of having blood sugars as well controlled as possible, as early in the course of diabetes as possible. and maintaining that for as long a period as possible that I always catch that by saying, you know doing it as rationally and safely as possible. And what we're talking about here today, meaning severe hyperglycemia was first really made evident to us in the dcct. where, you know, on average, every patient had a severe event per year during the study, because we were working so hard to control glucose. So it ties back to our topic. And yeah, for the next three and a half hours of this podcast. I'd be happy to add more if you'd like. Frank will never invite me back. So   Stacey Simms  32:48 Oh, no, no. Okay, wait, one more question about the dcct edic. Is there a follow up? Will we get another one of all these people soon? Or is it kind of   Dr. David Kendall  32:58 it continues to this day, and there are various components to it, it is much less thorough and intensive in terms of the follow up, but the 30 and soon 40 year follow up of those patients has been and will be published and presented as the years go ahead. So this is the study that probably will only end when we run out of investigators and individual volunteers for the study.   Stacey Simms  33:26 I gotta say I look at those studies. And I'm so glad you mentioned the brave and wonderful people in them. Because that has my son was diagnosed right where he turned to 14 years ago. And what they have done, has changed his outcome. It's just fabulous. So thank them next time you see I'm telling Stacy and Charlotte. Before we finish it, was there anything about that video segment that we didn't cover?   Dr. David Kendall  33:48 Yeah, I'll close and then toss it back to Frank. But I think one of the things that first attracted me to Zealand but also the work around Zegalogue is that hyperglycemia really remains one of those conundrums, one of the rate limiting features of managing diabetes most effectively, and bringing forth the two legs Zegalogue to help patients have the peace of mind make a plan for when the unthinkable might happen, a severe event. And doing so with the data that we've talked about where you have this very rapid and reliable response to Desi glucagon and the clinical trials for this, like many other emergency therapies, you don't want to have it, but you certainly want it on hand if you need it. So all of that, to me is central to what we're doing, not just with the clinical studies, but with the clinical launch of Zegalogue.   Frank Sanders  34:43 Now very good. I would just just close by saying what excites us about this launch in particular, is that there are 4 million people in the United States with diabetes on multiple daily injections of insulin and these patients are at higher risk of having severe hypoglycemic event. And despite the fact that there are 4 million people in the US with diabetes on on multiple daily doses, only approximately 14% of that population is prescribed a glucagon rescue therapy. So So what's been interesting is and positive is this is with the introduction of newer innovative therapies over the last year and a half, two years, more people are becoming aware of these treatment options, and the market is growing by by 10%. And we believe that that's really just the beginning is the you know, having Zegalogue in the market, that's yet another innovative option has the ability to further grow this by increasing awareness. And we're excited about the positive impacts effect that will have on patients and their caregivers.   Stacey Simms  35:44 Well, Frank Sanders, Dr. David Kendall, thank you so much for joining me and explaining all this. I really appreciate you spending so much time with me. Thank you.   Announcer  35:56 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  36:02 I will link up more information about Zegalogue. And about the DCCT EDIC trials as well. And if you haven't heard our episode, evidence-based hope, I highly, highly, highly recommend it, especially for newer diagnosed people and families. It's not just a look how far we've come kind of thing. But it also puts in perspective, a one see numbers, things right now that you can do to live a long and healthy life with diabetes. And it doesn't mean that you need to always have you know, a super low A1C I think especially as parents, we often lose track of the happy, good life thriving with diabetes, because we're so focused on getting that that time and range and those super low a one season those trials really put it in perspective for me, and what you need to really live well. And it's not what a lot of people on Facebook, what have you believe in just a second, I want to give you an update on how Benny's doing and wrestling has started. And oh my goodness, but first Diabetes Connections is brought to you by Dexcom. And it really is hard to remember what things were like before we started using Dexcom. I had a woman asked me what was our plan for kindergarten. And we were still a good four or five years away from Dexcom at that point, so it's really interesting to look back because it is so different. Now we were doing something like 10 finger sticks a day when Benny was going to kindergarten. I mean, even when he got older, we still did at least six to eight every day more when he wasn't feeling well or something was off. But with each iteration of Dexcom we've done fewer and fewer sticks. The latest generation the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about Benny's little worn out fingertips makes me so glad that Dexcom has helped us come so far. It's an incredible tool and Benny's fingertips are healthy and smooth, which I never thought would happen when he was in kindergarten. He for glucose alerts and readings from the G6 do not make symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. learn more, go to Diabetes connections.com and click on the Dexcom logo.   Aren't if you've been listening for a long time or you follow me on social media, then you know that Benny is finishing up his sophomore year in high school and he started wrestling when he was a freshman he got injured right at the beginning of the season. He tore his meniscus. And he was out for the 2020 season, which was right before COVID. They were able to get a full season in and he was part of the team. He was like manager and he went on crutches to every match. And he was pretty incredible season they won the state championships for the first time. It was just a really fun year, but he had to sit on the sidelines. So that was kind of a bummer. But he is back. He's worked really, really hard. And of course with COVID they kept putting off the season. And we always thought there is absolutely no way there's going to be wrestling. So he actually went out and got a job. I've mentioned before he got his vaccine, he's at a grocery store. And he's been working really hard. And so when wrestling came back, it was kind of a tough decision to make. But he was able to work it out with his work schedule. And this kid is so busy, and they had their very first match. As you're listening it would be last week. So Benny had his very first you know, match. But that's not the story. I want to tell you what was amazing. And by the way, I can't watch wrestling. Do you watch wrestling if your kids wrestle? I can't watch any sport my kids play because I'm the loud mouth mom. So I'm always the one like trying to look at her phone. So I'm not screaming I'm not being rude. I'm not not paying attention. But I'm shockingly I have comments. So I try to keep them to myself. But wrestling is just so gross. It's so rough. I can't stand it. But they come out on the mat and the ref comes out and he's like you know our loved ones with clean Theodora and I'm looking at the ref and I immediately Look at his belt line because there's a T slim pump. He's wearing a T slim next to you know, it's right on his back. And I was sitting very close. So part of me wanted to yell like, excuse me. Hello, sir. But I didn't do anything. I didn't say anything. I did take a couple of pictures which was probably very inappropriate, this poor man, but I couldn't help myself. It was so exciting. They faced two different schools. So it was the match that He was in and then there was another match. They didn't wrestle in, and my daughter had just come home from college. So after that first match, I said goodbye. I said, Okay, if I go and I left, I went home because my daughter, Lea, I haven't seen her in a while. So I wanted to run home to her. And I couldn't talk to the ref, because he went from one match. Immediately, he crossed the gym and went to the other match. Then he came over to kind of talk to me as I was leaving, and I told him and I, you know, it wasn't sure if he'd be like, Mom, it's so lame. You know, who cares. But he lit up, he was excited, and he wants to go say hi, but it was just such a busy night. And these reps are just working, working, working that, you know, as I said, I didn't get a chance to talk to him, but he didn't get a chance to talk to him. So I'm hoping that we see him again, as these wrestling matches go on. But hey, if you're listening ref in Mecklenburg County, North Carolina, drop me a line. And thank you very much for not noticing the bananas lady behind you taking pictures of your back.   Before I let you go quick note I will be speaking at the camp Nejeda event survive and thrive. That is on June 5. It's a virtual event. We are looking forward to friends for life in July, I will be there I'm not sure in what capacity as a speaker yet waiting to hear from them. Because it's very different this year, far fewer speakers, but I will be there as a vendor. So I hope I can meet at least some of you. And please join me tomorrow. If you're listening as this first drops on Wednesday, May 12, as I'm doing every Wednesday in May 4:30pm. Eastern on my Facebook page Diabetes Connections i will be doing in the news, my newscast that I'm trying out and then we'll turn that around and drop it as podcast episode. They're very short. My goal is to make them not only less than 10 minutes, hopefully less than eight or seven minutes. I'm really trying to keep it very tight and just have some headlines. But the top stories of the past week, all types of diabetes really be useful for you to make it bite size make it relevant. So let me know what you think. Thank you, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days. Until then, be kind to yourself.   Benny  42:19 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged

It's hard to imagine having a child diagnosed with type 1 diabetes during the COVID pandemic. Most of us rely on community support and in-person meet ups and events to help support and guide us during that first year. But when you're diagnosed during a time of isolation and social distancing, what do you do? Andrew & Emily Hollis join Stacey this week to share their story. Their toddler, Addison, was diagnosed a year ago, a time when only one parent could enter the hospital with her, due to COVID restrictions. The Hollis family connected with others online and even created a line of 3D printed items to help diabetes technology stick better on the body. Deck my Diabetes website Andrew testing Deck My Diabetes gear (video mentioned in the episode) In Tell Me Something Good we're looking ahead to in person events Chris Ruden's new book "The Upper Hand" Stacey will speak at Camp Nejeda's Thrive & Survive event  looking ahead to in person events and a new book to give you the upper hand. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription below  Click here for iPhone      Click here for Android Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6  continuous glucose monitoring system.   Announcer  0:24 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:29 This week, having a child diagnosed with type one during the pandemic happened to the Hollis family. Addy was just three years old. But her parents couldn't bring her to the hospital together because of COVID restrictions.   Andrew Hollis  0:43 We both walk into the ER, and there's the guard at the door and he's like only one adult. And I'm like, this is my kid. I need to be here. This is my daughter. But I also knew that my daughter needed her mom, and I want it to be there for my wife as well. And I know I've tried to put up a little bit of a fight and he's like no one adult,   Stacey Simms  0:59 Andrew and Emily Hollis join me to talk about their daughter's diagnosis, finding their way with diabetes during the last year in isolation and their product deck my diabetes. Oh, and chickens in Tell me something good. Looking ahead to in person events and a new book that'll help give you the upper hand. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.   Welcome to another week of the show. I am always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. I'm host Stacey Simms, and my son Benny  was diagnosed more than 14 years ago, right before he turned two my husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that's how you get this podcast. If you're a longtime listener, you know, I tell a lot of stories about how lucky we were when Benny was first diagnosed, we had a lot of positive experiences that can help set the tone. And you know, we already knew some families touched by type one. And we met a lot more in that first year in at person events. It's really hard for me to imagine having to do those first months that first year on social media alone. There was no social media at all back in 2006. So you know, it wouldn't have been an option then anyway. But that is what happened to the Hollis family. Addy is now four. She was three when she was diagnosed back in May. I know a lot of families have had kids diagnosed during the pandemic, we have added quite a few to our local group. And I so admire their strength in dealing with all of this without family or friends who can help in person. Look, the truth is you don't have a choice parents of kids with diabetes. Or if you're an adult living with type one, you just have to jump in and get it done. And the Hollis family did that. But they also found a way to fill a need helping keep gear sticking better with their product with Deck my diabetes. We'll talk about all of that coming up. As always, there is a transcript at Diabetes connections.com and I would really appreciate it if you have a moment to share the podcast if you haven't done that in a while. And you know new people with type one you think they'd enjoyed this episode are some of them are tech focused episodes, please share the podcast that is really the best way to help more people find it. Reviews are nice, but word of mouth from you is a lot better. Alright, Diabetes Connections is brought to you by Dario health. And over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones weekly insights into your trends. with suggestions on how to succeed. Get the diabetes management plan that works with you and for you. Dario’s published Studies demonstrate high impact clinical results. Find out more go to mydario.com forward slash Diabetes Connections. Andrew and Emily, thank you so much for coming on the show. Welcome. I'm glad to have you here.   Andre & Emily Hollis: 4:21 Thank you for having me.   Stacey Simms  4:22 Yeah, we've got a lot to talk about today. I guess we're going to talk about chickens too, at some point. Andrew, I'll start with you. Your daughter was diagnosed just in the last year. Tell us the story.   Andrew Hollis  4:35 Sure. So leading up to diagnosis. My wife Emily, she actually noticed some things in in our daughter and it's got to be the mom thing. You know, she was saying, hey, she's eating a lot. she's drinking a lot and I always chalked it up to she's growing. I mean, there's no history, family history on either side for type one. So we really didn't cross that bridge until maybe three or four weeks into it. And she said, Hey, I did some research on Google. And she might have diabetes, and I was in total denial. And it wasn't until in May, I was at work, my wife sent me a photo of my daughter. And you could just tell she was dehydrated circles around her eyes, white skin, super tired complaining about her legs hurting. And when I got that photo, I immediately called her and said, pack her up. I'm headed home, we're going to the doctors, see if they can get us in today. And our pediatrician got us in almost immediately. It was a Sunday, so it was kind of an off day for them. And we showed up there, they checked her blood sugar and said, go directly to the hospital, do not pass go do not collect $200 go home. My daughter didn't even have shoes on. We were barefoot. We were not prepared. We just rushed directly to the hospital.   Stacey Simms  5:48 Emily, let me ask you, What had you noticed? I mean, it sounds like all of the signs were there. And like most of us, you know, it takes a while until you really let all that sink in and go to the doctor.   Emily Hollis  6:00 You know, I'd call family members and said, you know, something's not right. She's not acting right. She doesn't want to walk in a chicken coop in the morning to let him out. He says carry me. You know, it was just, I knew something was wrong. But I was a little bit of denial as well. Like, I don't want it to be diabetes. And with no family history, I kept telling myself well, you know, maybe she's just studying a flu bug or something. You know, we had COVID going around, and we had been quarantined since beginning of March. And here it is May. And I'm like, it's probably nothing, but we're gonna take her in anyways. And then when they finally told me it was just like the whole world just, you know, came crashing down.   Stacey Simms  6:33 Yeah. Did they test her for COVID? At any point? No, they   Emily Hollis  6:36 did not. Because she never ran a fever. She never had like, any congestion or anything like that. It was just strictly the, you know, let's go potty every five seconds and, you know, drink 30 gallons of water, it seemed like and let you know, it was just non stop. And I was, you know, to the point of frustration I felt bad for but then it's like, after we got the diagnosis, I was like, you know, I probably should have taken her in sooner. Even though the doctors assured me that we got her in there just in the nick of time.   Stacey Simms  7:04 I think we all feel like we should have gotten our kids in there sooner. I have friends who are nurse, right? You know, I have friends who have type one themselves. And that denial is a very, very strong thing. And we just we don't want to think that it can happen to us. So then you're in the hospital. Did you do the basic training there? You know, three days was she at a danger pretty quickly, Andrew.   Andrew Hollis  7:24 So we get to the hospital in what was interesting is being in COVID, lockdown, we both walk into the ER, and there's a guard at the door. And he's like only one adult. And I'm like, this is my kid, I need to be here. This is my daughter. But I also knew that my daughter needed her mom. And I wanted to be there for my wife as well. And I know I've tried to put up a little bit of a fight and he's like, no one, one adult. So my wife went in through the ER entrance. And when they finally got settled in a room she called me and I've been sitting in the parking lot now for almost two hours just worrying my head off just not sure what's going on. And calling friends and family and just about in tears. You know, I'm just telling them, pray, pray hard, because I don't know what's going on with Addy. But we're at the ER, she ended up calling me and said, Hey, they're saying one adult. But bill let us trade off one time per day. The plan at that point was basically to have her spend the nights with my daughter. And then I would give her the reprieve time during the day to go home and sleep and get a shower. We didn't have any clothes with us at the time. So I ran home and started packing an overnight bag and had to hand deliver that to the guard at the front. And then he walked it up to the room for her. It was really interesting to have to take that answer of No, you cannot enter and just have to wonder what's happening. Fortunately, with technology, we're able to FaceTime we were able to talk. And we had a fantastic nursing staff there who actually bent the rules a little bit and said, If you happen to be passing each other in the room, and it takes an hour or two. Oh, that's okay.   Stacey Simms  8:50 That's fantastic. I thought that I was thinking more about COVID after you got home and not being able to be part of an in person diabetes community, but holy cow, you know, to be able to live together.   Andrew Hollis  9:02 Yeah, it was very difficult. Like I said, when we were passing in the room, that's when the nurses took the opportunity to do training with us. Yeah. And so that worked out really well. We actually ended up several days there. I think she was in the hospital for almost four days, when they were doing the training, we kind of stretched that time to be almost three to four hours together. And we would go home, get a shower, get a couple hours of sleep and come back after dinner and then take over for the night shift.   Stacey Simms  9:28 Emily, What do you remember about that time? I mean, learning about diabetes is so overwhelming. I have like some bits and pieces but the whole thing still seems like a blur.   Emily Hollis  9:37 Yeah, I agree. It was long. It was very long. You know just in and out and then you know at night it's like this when I it kind of reminded me a little bit of when I was in the hospital having episodes like you're trying to sleep, they're out poking and prodding you every seems like every five minutes. You're like, you know, this child's gone through enough. Leave her alone for an hour. So you don't really get any rest just like I said like labor and delivery. You don't get anywhere. I've been in hospital. And that was very stressful. You would cry for a dad, he couldn't come up there. And then it I mean, overwhelming. It's just very, it was very overwhelming. Yeah, it's a ton of information. They want you to read all these books and all these pamphlets, and you have gotten zero sleep, you're dealing with a child that, you know, does wants mom and doesn't understand what's going on. Why am I getting poked in the fingers? And why am I getting poked in the toes, and I'm trying to sleep and it was very hard, you know, looking back now, she doesn't really remember a whole lot of that today, which is kind of a good thing. I kind of find that as an answer prayer, because she doesn't remember that traumatic time that she had.   Stacey Simms  10:38 Andrew, do you could speak a little bit to about the the overwhelming amount of information, I'd love to hear your take on that.   Andrew Hollis  10:43 Because I was on the day shift, you know, washing machine, my daughter during the day, I got a lot of interaction with the nurses that were more than just, hey, let me check her blood sugar and make sure she's okay and fix the IV. And there was a lot of conversation, when they presented us with a book and said, Hey, you start reading this, this is good information. And between, you know, the things going on in the hospital, there's no way you can get enough reading and I tried to sit down and read through a chapter and just the medical terminology that's dropped down you having no history for diabetes, and you're learning about aka and you're learning about how to manage blood sugars and how to check blood sugars and what insulin does and how insulin works and how your pancreas is supposed to function. And how a diabetic pancreas maybe doesn't function all the way or at all, and you start getting all of this information piled on you. And then they're like, hey, in two days, you're going home, and you've got to do this and you become almost panicked because you're like, how am I going to manage and I'm sure every diabetic parents been there how am I going to manage this I've had three days crash course on how to be this kid's pancreas and I was not designed to be a pancreas. Definitely was overwhelming and scary. Very scary.   Stacey Simms  11:50 Emily take me through when you went home. What was that like?   Right back to Emily and Andrew but first Diabetes Connections is brought to you by Gvoke Hypopen and you know, low blood sugar feels horrible, you get shaky get sweaty, even feel like you're gonna pass out there are a lot of symptoms that can be different for everyone. I am so glad we have a different option to treat very low blood sugar gvoke hypo pen, it's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle before Gvoke, People needed to go through a lot of steps to get glucagon treatments ready to be used. And this made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk. Now back to Emily. And I was asking her about going home from the hospital.   Emily Hollis  12:58 Well, we actually got to go home the day before my birthday. So that was I was like Addy can't tell the nurses I have to be home for about a birthday. I'm like, Okay, well, we can probably work that out. So we got home. And at that time, she was not on a Dexcom or a pump or anything. She was dealing with a lot of highs more than lows at this point. We're still trying to get her out of the two hundreds and move at home to hospitals. So it was a lot of finger poking and crying and screaming and I don't want a shout out and it was very hard. Nobody likes poking their kids, you know, you have to hold them down. And it's just, it's a lot of a lot of stress. But you try to stay calm and just reassure them that it's for their good you're doing this to help them until they got the Dexcom I didn't get any sleep because you're just constantly worrying about their sugar. Okay, is she gonna wake up is she gonna pass out?   Andrew Hollis  13:47 Probably a week and a half after diagnosis. We were driving down the road and daddy goes, there's a sale out there. Okay, we'll put our mask on. We're Let's go, you know, COVID we nobody really knew a whole lot about it. So it will keep social distancing. But we'll check out this garage sale. It turns out that couple had raised a daughter with type one. And unfortunately, they gave us their horror story about her going into seizures in the middle of the night. And that's how they induce you below and we're like a week and a half into it.   Unknown Speaker  14:15 Oh my god,   Unknown Speaker  14:16 it made us panic. That did not help us understand and feel better.   Stacey Simms  14:21 Oh, you know, I say all the time. We were the luckiest people ever. Because it's the stories that you hear in those first weeks that set the tone. And oh my god, how scary is that?   Emily Hollis  14:33 Yeah, my daughter is sitting there listening to the story as she's holding the course. Yeah, like she's looking there and her sugar is going up because he's getting you know she's getting anxiety over this. Yeah, like we gotta go we got somewhere to be   Stacey Simms  14:46 your home. you're figuring things out. I always tell people the first two weeks of us being home was the worst and then after two weeks ago immediately really almost got better that quickly. He was okay with. He was always okay with finger sticks, but he got okay with the shots like it. really got better quickly, although it's, you know, it's still scary and, and stressful? Did it work out more quickly than you had expected? Or was it more difficult for those first few months?   Andrew Hollis  15:09 I think we both found out that children are very resilient. And Addy definitely picked up on things very quickly and understood. You know, after about a week, she kind of understood, okay, this is going to happen. And the finger pokes got a little bit easier. She was always worried about the hospital lancets they were using adult, they were using the adult land sets, which are massive on those little fingers. There's no real estate there and a three year old, the one that we ended up getting from the pharmacy worked a lot better was a lot smaller, wasn't nearly as deep. And so she kind of gave into that really quick. But being on MDI with the shots, the injections, we kind of took turns, giving it until there was a day that I actually hit one of the nerves in her leg. And she jumped through the roof. And I think it traumatized me more than traumatized her. I mean, I I walked away knowing that I just hurt my daughter. And that's not something you want to do. And ever since then she's been like, Dad, you can do it, but only if mom's not around, because mom does it better. Right? So, so I think, you know, she gave into things definitely we get in a routine and and since we started this journey, we've made friends with a lot of people through social media, that has also just began their journey. And some of them that have only been a week or two weeks when we finally get to talk to them. And we try to encourage them and let them know, you will get in a routine and you will develop new daily routine very quickly. And it will become second nature. Before you know it, it won't be this big, scary thing looming anymore. You'll know, okay, we're going to eat, we're going to check your blood sugar, and we're going to give you your your insulin, and then you can go eat, and everything's gonna be okay. And we're going to go on throughout our day, and it's becomes the new normal, and it happens so fast. Literally, within three weeks of being home in the hospital, we were already very comfortable and starting to teach our friends and family. If something were to happen, we're not around, this is what you need to do. Emily,   Stacey Simms  17:01 I've looked at your perspective, I know you don't have a different one. But to me going through COVID isolation with a child with type one newly diagnosed, I see this in my local group too, it's going to be very difficult, because one of the things that really sustained me was beating up with families that had been doing this for a long time, like meeting in person. It sounds like you were able to form at least an online community or talk to other people. What does happen? Like,   Emily Hollis  17:26 yeah, I mean, I am a people person. So it was it was very difficult. I mean, very difficult. But I mean, if it wasn't for social media, I think it would have been a whole different story. You know, I've met, I can't even count, you know how many families I've met have parents that are going through the same thing. And I'm just very thankful for the social media groups that I've made friendships with other families that we've been able to help and, you know, we sent care packages, and you know, different things like that adding mixed pictures for different people. And, you know, she really enjoys knowing that there's other people out there like her and she's not the only one.   Stacey Simms  18:01 Alright, so let's talk about Dec my diabetes. It's amazing to me, I spent the first year of my son's diagnosis, basically, with my head down going, what the heck, how am I going to do this? You know, I'm trying to be a mom, and I'm trying to work and I'm trying to, you know, I have two kids. And I've talked to a couple of people in the last year who said, My child is really diagnosed, and I'm going to create this new thing that's going to help all these other people into how did you get this idea? How did this come about?   Andrew Hollis  18:25 Well, prior to diagnosis, I had bought a 3d printer kind of as a hobby. And my brother started a small business, he allowed me to make some items for him. And he was actually my first customer who paid off my machine. So that was really nice. But what ended up happening after we were on Dexcom, we noticed that we needed an overlay patch with an active child and the first patches we tried, they just stuck to her skin so well, that getting them off at the end of a cycle. It was a screaming fit, it would take us 1520 minutes just to get the overlay off before we can even start on the Dexcom itself. In one of the sites in the forums that I'm part of for 3d print communities, somebody had created a very similar feel to what we now offer. And so we printed one and tried it and it worked out really well. Emily posted it on one of the diabetic Facebook pages and people were like, Hey, we're waiting on ours. It's taken forever shippings backed up because of COVID. Can you make one? So we made a few and realize, man, people actually need these and they can't get them maybe we can fill a gap. So I contacted the owner of that particular file and said hey, you know, you've released it under copyright law, and I need your permission in order to formally sell these. I'm asking for permission and after some discussion, the fly ultimately came back and he said make your own. So we did and we we created what I believe is a better mousetrap. It fits better it's contoured to fit the Dexcom and that was the first product right was our G6  shield. What we've noticed is that the market there are people that are making similar things but they are awfully expensive. Have, we were able to cut some of our competitors prices almost in half. Because we don't need to make a million dollars, we really want to help people, we need to cover our costs and our shipping. So that's where it started. And from there kind of spooled because we had requests for Omni pod covers that are similar design. People want to deliver a cover that's a similar design to that. And actually, we just finished designing and we'll be releasing this week, sometime and I port cover that will help children with I ports help keep them in place. Because let's face it, diabetic equipment is very expensive. We can't afford to be knocking them off or having them fall off early.   Stacey Simms  20:36 Yeah, and I should just mention, if you don't know as you listen, when an eye port is, I wish I had found this earlier because my son did we did shots. We did MDI for the first six months. And I port is, I believe, a Medtronic product. And it's not always covered by insurance. I did a lot of research. Andrea, Emily, when I published my book, this is one of the things I mentioned in it. It's basically a pump site, it goes in the same way as a pump and said, you know, the needle goes in the needle comes out, the calculus stays below, it's a little teeny sticker, but then you put shots through it, instead of feeling the shot go in basically, it makes it so much easier. It's a little bit more precise, I think I'm giving a review of someone who has never used it just from what I've heard. But that's a really interesting bit to make this technology for. And Andrew, tell me a little bit about what it does, because you mentioned this the stickiness of some of the other overlays. This stays on, but it's not super sticky.   Andrew Hollis  21:27 Correct. Our covers are designed to meet three main goals. The first goal is to provide a shield between an overlay patch and the device itself with the intent of being able to change an overlay patch without risking removing the device on accident. So if you're mid cycle, and you need to change that patch, because it's just starting to look ratty or falling off, it will allow you to remove the patch without accidentally peeling up the adhesive of the device you're wearing. So that's the first thing that we wanted to accomplish with it. The second thing is to help provide bump protection. I cannot tell you the number of people that bump their device on a doorway or when they're putting their shirt on and they rip it off. There are our devices have sidewalls that cover the Dexcom the lever a the Omni pod, they're contoured to help deflect some of that impact and help things glands off of them. In fact, I just released not too long ago, a promo video showing all three of those devices on an arm where I'm smashing it against the doorframe as hard as I can actually bruised my arm trying to get it to knock off and they don't come off.   Stacey Simms  22:32 I am laughing because I watched that video. And I wanted to ask you if you hurt yourself, because and I'll link it up. You have to see it. He's just boom, boom, boom, boom into the door jamb.   Unknown Speaker  22:44 That's gonna be painful. Yeah, I'm   Emily Hollis  22:46 gonna add in there apart. The Addison was yelling from the end of the house, she said, makes her death. Okay, you did? They're banging his arm on something.   Unknown Speaker  22:55 Yeah, yeah. That's great.   Andrew Hollis  22:58 Really. Yeah, they do work. The third thing that our covers do, and this is really what our mission is. If you look at our logo, it says deck my diabetes deck out and show off. We wanted there to be something fun and colorful that you can add to your medical device that makes you feel comfortable about showing people my daughter was afraid of going out in public with her Dexcom she did not want to go to our family get together, she did not want to have a birthday party. She did not want people to see it because she thought she was different. And we tried to explain to her you're different, but it's not. It's a good different. You have something this thing here saves your life. And helps you understand what your diabetic track is. Being a three year old, she just didn't get it. So we put that cover on. She was suddenly like, wait, I could pick a cover. And I get to pick a patch, I get to accessorize. And she was all about putting it on. And then once she had those the patch on and the cover on, she was showing everybody look at this, look at my Dexcom Look at my cover, my dad made it for me it's purple or pink or whatever color she wears that week. And so those are the three main goals that we have for our products to help you change the overlay patches if you need to, to protect your device and to be comfortable wearing it to be able to assess arise and show off what you have the technology we have that ultimately makes life a lot easier.   Stacey Simms  24:18 As you look ahead. You are coming up on one year of your your diversity. The Addison Emily, let me ask you, what would you say to yourself a year ago, you know, how do you think you're doing?   Emily Hollis  24:31 Actually it's gone by very fast. And if you were to ask me, you know the dailies, the hospital, can you do this? No. You know, it's like, No, I can't do this. Why are you sending me home already? But I mean, it's just part of our life. It's just a normal everyday thing. Now,   Andrew Hollis  24:46 you know, if I if I could talk to myself a year ago, I would have said keep calm guys got this. Hang on. Life will become normal again soon. You know, it's hard to express how far we've come and feeling more comfortable with Dealing with this disease and understanding more about it. I did not know when she was diagnosed that I was going to have to wear so many hats. And now I'm partially her pancreas. I'm a data analyzer to help Emily make decisions based on trending data what we need to do with insulin. I'm a dietician now, right? I have to look at every label. If you're not diabetic or not family of a diabetic, you don't understand that you're looking at every label trying to understand what's in it, what's the carb count? What's this gonna do to her blood sugar, and then you realize it becomes normal. I probably look like a crazy guy in the grocery store picking stuff up now. But every, every time I'm looking at the label and reading it, and I'm calculating in my head, what's this going to do? Is this worth having to bump that extra insulin or maybe fight that high? But I would tell myself, it will be normal. Soon, it will become the new norm. Just hang in there.   Stacey Simms  25:47 Who wants to tell me about the chickens? 2022 chickens.   Emily Hollis  25:52 Yeah, we have 22 chickens. I always throw around a farm. My grandparents had a farm growing up. I'm an animal lover, Addison. You know, she take any animal and if she could, is on the hunt for a unicorn, so if anybody ever sees one of those, she really wants a pet unicorn. One day, she said there might be one that shows up, but we'll see how that works. Anyways, yeah, I mean, we do it as a hobby. It's, you know, it's fun to watch. We, you know, have the eggs that sell the friends and family. And this is something that I don't know, it's relaxing. I know that kind of sounds weird. But I find it relaxing to watch the chickens and go out there and seeing them. And right now we have 10 baby chicks that we just actually took out to the coop yesterday. They're about six weeks old. So we're all introduced them in a couple weeks to the old hens.   Stacey Simms  26:40 Do you get eggs from them? I mean, I assume?   Emily Hollis  26:42 Yeah, we do we get the eggs from them. It's nothing like farm fresh eggs. If you've never tried them, you'll never buy wheat. Or again,   Andrew Hollis  26:49 we like to say that if you own chickens, you'll understand chicken math. So we started with, I think six chickens, and rapidly that grew to 10. And then we realized we needed a bigger coop. So I searched around and found an old shed and converted it into a coop and we needed a bigger run. And then we had 20. And since then we've rotated out some of the older chickens that aren't laying anymore and brought in these new chicks. But she's Emily's already said she wants more and like, we just don't have this space. And I can't build another coop overnight. So we'll have to table that for a little bit. All right,   Stacey Simms  27:21 I you will know that I am definitely not a farm type person. Does anybody eat the chickens themselves? Or is this just eggs pets? For me a horrible person for asking this?   Andrew Hollis  27:31 No, there are, there are definitely people who will eat a laying chicken after they've stopped laying or slowed down to a point where there there's virtually no egg production. We don't mainly because we see our chickens as pets. The other thing to think about is the older an older animal get, the tougher the meat will be so a four or five year old chicken is not necessarily something like the rotisserie chicken to pick up from the grocery store. So part of our journey in creating our business is we've developed a lot of really good partnerships, and a lot of good friendships, right. So when you're in the business, you're looking at other things, and you're getting feedback from other people. And one of the other businesses that's out there actually has become really good friends of ours. And they're based out of Texas. They're called the sugar patch. And they provide overlay patches that they manufacture out of their home, the owner, she is a type one diabetic. And we have actually just recently partnered with them to be able to sell some of their patches through our site. So you can come and get a cover and a patch that fits without actually having to do any trim or anything else. But there are other partnerships that we are in talks with right now with other diabetic families that have started businesses because of their child's diagnosis or their diagnosis. We are trying to leverage some of the larger community to be able to help each other, advertise for each other or being able to put in a little Facebook post for each other. Because to me, it makes more sense to support a diabetic family than maybe to support a larger conglomerate that just produces for the money. Yeah.   Stacey Simms  29:07 Well, Andrew, Emily, thank you so much for joining me. It was great to hear your story. Again. I can't imagine having a child diagnosed during the last year where you couldn't, you know, see people in person, but it sounds like you've really found a community and I'm so glad for that. But thank you so much for joining me. I appreciate it.   Andrew Hollis  29:24 Well, thank you so much for having us on. We had a fun time.   Emily Hollis  29:26 Thank you so much.   Announcer  29:33 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  29:38 I will link up information about deck my diabetes. And of course that video that we've mentioned, where Andrew is slamming his arm into the door jamb to show you the strength of the product there. I'll link that up as well. If you've listened for a long time, you know that chickens just kind of seem to come up. I always have dumb questions about chickens. That's not my life experience. I'm not going to ever be a person Some who has chickens in my backyard, just a different way of living. That's all. Okay, tell me something good is coming up. But first Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom system since Benny was nine years old. We started with Dexcom back in December 2013. And the system just keeps getting better. The Dexcom G6 is FDA permitted for no finger sticks for calibration and diabetes treatment decisions, you can share with up to 10 people from your smart device. The G6 has 10 day sensor where the applicator so easy, I haven't done one insertion. Since we got it Benny does them all himself, which is a big change from the previous versions. He's a busy kid, knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is really reassuring. Of course, we still love the alerts and alarms, and that we can set them how we want if your glucose orders and readings from the G6 do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.   It's time for Tell me something good. And I want to give a big congratulations to Chris Rutan. Many of you are very familiar with Chris. He lives with type one. He was born with a much shorter left arm and only two fingers on his left hand. He has shared on this show that he hid his disability for years and years and never wanted to take his hand out of his pocket even. But he is now a motivational speaker. He is just a champion in our community. He was on the Titan games. And he's been all over the place. He was just profiled recently in men's health. And today, his book comes out. It's being released today on Amazon and everywhere. And it is called the upper hand leveraging limitations to turn adversity into advantage. I love a good book title. And that really is fantastic. So congratulations to Chris, I will link up to the book. I haven't read it yet, at least not as of this taping, I will probably circle back with him and have him on the show again, because he's just always a fantastic guest. And he's just a fantastic person. He also has the best sense of humor, as you can tell by his book title. But at friends for life a couple of years ago, it was either 2018 or 2019. He was taking pictures with kids. He has a really cool looking prosthetic arm. And he would take it off and he would take the hand off and he would pose in crazy positions and put like have you hold it I'll have to link these pictures up or put them in the Facebook group. It's funnier for the kids. I look like such a ding dong. But it's amazing how he goes out of his way to make you comfortable. And he suddenly hero in our community. He's a hero in places like the lucky Finn project, which is a nonprofit organization that helps raise awareness and celebrates people born with limb differences. And you know why lucky Finn, if you've seen Finding Nemo, you know, Nemo has a lucky fin one is smaller than the other. And that doesn't really stop him from what he wants to do. It's a great organization. And I've only learned about it because of Chris. Congrats again, Chris, the book is the upper hand. And I'm sure you'll be hearing a lot about it. In other Tell me something good news, friends for life is going to be in person in July, the largest family diabetes conference in the country is back it is going to be different, of course, because even though we're getting back to normal, we're certainly not there yet. And for people with diabetes, CDC and others have different guidelines. But there is a lot of information now at children with diabetes calm, I will link that up in the show notes as well, as you're listening, a lot of the kids groups are likely full because they really had to cut down on attendance, there is a lot of new health and safety requirements and information. But if you're at all interested, definitely check it out my understanding and I'm not part of children with diabetes, the organization that runs this or friends for life, although I'm a big fan, and I go every year, and I've spoken quite a bit. My understanding is that as we get closer, if the requirements change, if Disney's guidelines change, they may be able to open it up to more people. And as a personal aside, I think this is going to be the experience of a lot of these programs. And our local diabetes camp is planning to open with half capacity but has a waiting list because they're hoping as they get closer, the restrictions will start to be lifted. So who knows. But let's be optimistic. And if you've got an in person event happening, let me know this summer this fall. I mean, we're gonna be seeing so many more things open up. Oh my gosh, I know it's gonna take a while and we want to be cautious, but I'm getting really excited. So that's my Tell me something good. I am planning to go back to friends for life this year. I don't know about what the speaker situation is yet. I may have it sorted by the time this episode airs. But as of this taping, My plan is to be one of the vendors again, I absolutely love being part of the conference. And I think that's where I'm gonna start talking about book number two. So I will keep you posted. But that's the goal right now I have a good idea but I need your help for the world's worst diabetes mom Park. To do or whatever we're going to call it. If you haven't told me something good story or an in person event, you know, all that's all the same right now to me, please let me know Stacy at Diabetes connections.com or post on social media, join the Facebook group. And we will let everybody know about your good news.   Hey, before I let you go couple of events to tell you about still virtual but lots of fun, survive and thrive boot camp is happening. This is for adults with type one. And this is a camp Nejeda or the program of Camp Nejeda. We are not there in person yet, which is a fantastic diabetes program in New Jersey, which just as a coincidence, my cousin who lives with type one, he went to this diabetes camp growing up Saturday, June 5, bunch of sessions about living with type one, learning about the latest and greatest in technology and mental health. I'm doing a session on advocacy. And it's not really on traditional advocacy. It's more about sharing your story sharing your voice. Why yet all there are it's a crowded field. Right? Everybody's got a story. There's five bajillion influencers now, but why your story is still really important. And I want to talk to you about sharing it and getting the word out and that kind of thing, what media looks for to we're going to talk about that how to share your story to the media, traditional and not so traditional. So I hope you can join me for that I will link it up. Also, if you're a podcast person, if you're interested in podcasting, I will be speaking at pod fest a master class, the second week of May, I am doing a whole session about ethics in podcasting. And I'm so excited. I have been pitching this for years and somebody finally took me up on it. So we're gonna be talking about ethics. It's gonna be so fun for me. I'm excited about it. I have a free promo code if you would like to join masterclass, and this is again, a virtual podcasting conference. It's not about diabetes, just let me know and I will DM you the promo code. Okay, I think we're good. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I appreciate each and every one of you. It is we're having about six years of the show. And I still am just so excited to produce the show and bring it to you every week. So thank you for being here. I'm Stacey Simms. I'll see you back here in a couple of days. Until then, be kind to yourself.   Benny  37:22 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Ben West was a key organizer and architect of Nightscout and OpenAPS software. Even after all of the DIY and commercial development of the last ten years, he says we've barely scratched the surface of removing the mental and physical burdens from people with diabetes. Among those burdens, he says, is what he calls the onus to bolus - the responsibilities of diabetes that even the most advanced current software can't totally relieve. Ben is now the CEO at Medical Data Networks which has launched its first venture: T1 Pal.  Read the Nightscout email Stacey mentioned (click here)  Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (rough draft) below Click here for iPhone      Click here for Android     Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:21 This is Diabetes Connections with Stacey Simms   Stacey Simms  0:26 this week talking to someone who is deeply technical, but also deeply thoughtful, who has been an incredible part of the Do It Yourself movement over the last 10 or more years. But who says we've barely scratched the surface of removing the burdens mental and physical from people with diabetes. So welcome to another week of the show. We aim to educate and inspire about diabetes with a focus on people who use insulin. I am Stacey Simms. And yes, this show is already a little different sounding here at the top no big intro or tease. And that's because my interview with Ben West is massive. It is very long. It is the longest one I have done so far on this show. But it is well worth your time. I am so excited to bring you this interview with Ben Ben West was a key organizer and architect of the Nightscout and open APS software. He is now the CEO at medical data networks which has launched its first venture T1Pal, I think Ben influenced or work with or sometimes both just about every person I've talked to under the we are not waiting umbrella. And if you're not familiar with that, if this is your first episode, welcome, but we are not waiting is kind of the rallying cry that became a hashtag back in 2013. And if you are new, I use it as a keyword you can search for it all one word, we are not waiting over at Diabetes connections.com and see every episode that has featured those incredible do it yourself, people the community that really rallied together and push the technology side of diabetes forward, I believe many many years ahead where it would have been otherwise, as I said, it is a very long interview. But you know, it's a podcast, listen in chunks. Stop, start, you know, however you want to do it. But please, I really hope you'll listen to Ben because he has so much story to tell and a lot of thoughts on how diabetes care really needs to improve. In the short time since I spoke to Ben, there has been a bit of a discussion within the Nightscout group about his business. It is part of an ongoing debate about the future of Nightscout and the future of open source in type one, Ben has the full support of the night scout foundation. In fact, they sent out an email on that and some other issues. And I will link to that in the show notes. I think it's a very good read. In addition to touching on this issue, it is a great way to catch up on what's going on in that space. So we'll get to Ben West in just a moment. But first Diabetes Connections is brought to you buy Gvoke Hypopen . And you know when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar, why we carry emergency glucagon, there's a new option called Gvoke Hypopen, the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke logo Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon.com slash risk. And this is a good time to remind you that this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Ben, it's great to talk to you. Thanks so much for jumping on and sharing some time with me and my listeners.   Ben West  3:55 Oh, thank you, Stacey. I'm happy to be here. Thanks for inviting me.   Stacey Simms  3:59 I'm not even sure where to start. I have so many questions I want to ask you and there's so much history here. So maybe we just start if you don't mind. Back in college when you were diagnosed. You were student right? You were young adult.   Ben West  4:12 Yeah, I was a college student when I was diagnosed and I had all the classic symptoms where I you know, I was going to the bathroom a lot and just didn't know what was happening. My diagnosis story is I went through this for probably a week and one night I realized I had gone to the bathroom like seven times in the one night and I realized that means if that's once an hour like what sleep did I get last night. I'm nowhere near eight hours of sleep. This seems like a serious problem. So I went to a health clinic in my college town. And they said well, you're a skinny young adult, so we don't know what's going on with you. Maybe you did eat something and you didn't tell us I wasn't eating anything either. And they sent me home with some pills and said call us in two weeks. Someone through the grapevine heard that that didn't sound quite right actually came and interrupted one of my music lessons and said, you know, you need to go to the hospital there. Oh, wow, they're expecting you there. So I went to the hospital, and they checked me in over the weekend and diagnosed diagnosed me with type one. Wow,   Stacey Simms  5:13 you were lucky, right? Lucky that they interrupted your lesson there.   Ben West  5:16 Yeah, you know, I mean, I've heard a lot of stories during the work that I do. And yes, as diagnosis stories go that I you know, that's pretty mild. Yeah,   Stacey Simms  5:26 I guess I should ask you some technical questions from the very beginning. What were you using? I assume that in 2003, you didn't immediately start tinkering with an insulin pump. Right? You You went on a more traditional routine at the start?   Ben West  5:38 Well, I actually had to drive 45 minutes to clinic and Little Rock house in a different part of Arkansas going to college. And I had to drive 45 minutes to get to an endocrinologist and the endocrinologist at that time that I thought I was lucky to be getting into the specialist where they actually deal with, they actually specialize in diabetes here. And I met with the nurse, the PA, and the representative from Medtronic was actually in the room. They actually said, You seem like a smart young lad, we'd like to get you out a pump as soon as possible. And it turned out as soon as possible was like nine, you know, nine months later. So I went through the whole syringes and shots and meters and got on the on the pump. But at that time, they actually told me Yeah, the benefit of going on the pump is dispenses insulin automatically. And in the future, we're going to have CGM. There's some CGM already in the works. Those will be here sometime. And then when you get the CGM and the pump combined, it does like all these things together, right, like so I understood right away what they're talking about in that office very early on. Okay, you got you can measure glucose, and you got this pump. And in theory, it should be doing all of these things together. At that time, they even said, You know what, they even have a patient in California right now, it's got a fully implanted version. So sometime in the next five years, we're gonna have a fully implanted CGM insulin pump combo, it'll do all the work for you. This is all just temporary. That's what they told me.   Stacey Simms  7:01 2003 Yeah, just to be clear, though, Ben, the Medtronic rep was in the room with you at your doctor's appointment?   Ben West  7:09 Yeah. Wow. You had some introduction? I was actually I was glad they were honestly, that certainly seemed to be the, you know, take these pills and call us in two weeks approach.   Stacey Simms  7:20 Sure. Yeah. It also beats a bunch of other people who had their doctor say five years to a cure. I mean, yeah, you know, there's a lot of really bad ways to be diagnosed and to have those first conversations, but man, that's fascinating. Who was the person in California who had an implanted pump and CGM? What was this like, fantasy made up? No,   Ben West  7:39 I think I know, I believe him. I, I've toured the Medtronic facilities, again, during the work that I do, and they've invited me over, and they have a hallway of all kinds of awesome stuff that, you know, never made it to market or, you know, there's a lot of cool things that go on behind the doors. I'm still using a 515. I think that was in 2008. So certainly, I I'm a big believer in what they do. There is a lot of potential that I think is clearly been untapped behind this technology.   Stacey Simms  8:12 So fast forward nine months, you jump on to your insulin pump. It's not hooked up with a CGM. At the time I would assume.   Ben West  8:19 No, it the CGM didn't exist yet. Yeah, it wasn't on the market. Yeah.   Stacey Simms  8:23 What was your experience? Like with the pump?   Ben West  8:25 Oh, it's okay. It's fine. I preferred it to the shots. But everything's got trade offs. Right. I had at the time I, you know, was going in or wasn't music major. And I so I had performances that are assessed as part of my official grade. And, you know, I'd go in for these performances, and some one of the teachers would tell me hide that thing. You know, they had wires hanging out, right? And I told him, you know, I'm not trying to hide anything, I shouldn't have to hide it. And he told me, You shouldn't show it off. I thought, wow, here I am going for a performance. And that's, that's the last thing I want to be thinking about right now. Sheesh,   Stacey Simms  9:00 did you win that fight? Or did they make you hide it?   Ben West  9:03 If you're a college student working for a grade? Yeah, you're gonna, you're gonna put it away real fast, right? I mean, that's terrible.   Stacey Simms  9:11 What made you start thinking about tinkering with stuff? Because you started doing that on your own is my understanding, right? This was before you met a lot of people in the community that you started, I don't want to say taken apart, I'll let you tell the story. But you started doing this stuff in 2008 2009,   Ben West  9:28 the winter of 2009 into 2010. I remember that's when I started with a different focus. Actually, I don't know if you've talked to Scott hanselman at all, but he's, he's known. He's known for saying that every person with diabetes ever, right? The first thing they do is they start working on on something less less than the burdens here. And actually, that was true, right? As I was diagnosed, I had some experience as a computer science minor with some programming, and often my side projects, and I remember I built a dashboard. Actually, in 2003, right after I was diagnosed, that allowed me to enter in all the information into a database, right? Because I was walking around with, you know, three by five index cards, trying to write down all these carbohydrates and insulin injections. And it was getting really tedious. But I did that for years with pen and paper and pencil. And I thought, surely, why are the doctors giving me a hand drawn curves on napkins? Like, what is that about? Why are they sketching on these pieces of paper and the way that they were explaining this to me in the hospital, I thought they were going to show me a full on simulation that showed how my body was working. I've been watching too much Star Trek.   Stacey Simms  10:44 Well, you know, I'm with you. We expected things like that, too. When you said you made the dashboard. What did you use for the interface? Was it computer was it?   Ben West  10:53 Yeah, it was this was before web 2.0. This was all PHP and HTML. And I realized I was horrified. At the result, I realized I was never going to use it. It was a wall of inputs, where it's just like tons of inputs. And I wrote for times, and dates and readings. And I realized there's no way I'm going to use that. Look at it. Why would anyone use that. That's why I'm going to use pen and papers, because they're the software for this is very difficult. Then web 2.0 happened, there's a bunch of things in the 2000s, as we approached into 2010, that I, you know, I graduated school, I got into industry moved to San Francisco, the hardest Silicon Valley doing, you know, web dashboards for companies, professionally, where we're really solving people's problems where if you have this complicated problem, you can share the link with a view of that problem, and the tools for solving that problem with someone else. And that ability to share that link made the possibility for solving problems collaboratively possible in new ways, transformative ways that really fundamentally change the workflow for solving problems. So that idea really got into my head professionally, as we kind of approached 2009 in 2010. I had tried my first CGM about five years later, right, so around 2008. And the experience with that CGM was was not great. I had to go through insurance, right, they said, I had to get a new insulin pump to get to the integrated system that would read onto the insulin pump. The insurance said, we're not going to pay for that for this new one. And not only that, but according to our policy, you should never have gotten one. So that seems like an issue. Yeah. So it took us It took another nine months, right. And, you know, it goes to the appeals board. And the appeals board comes back and says no insurance, you should, you know, that's medically necessary, she should pay for it. So I finally got the pump in the CGM. And like a lot of people that I see on social media that are excited by the promise of the benefits of this new technology, I tried to really make it work for me, right, I got all the glue out. Skin all louder than the adhesive and I got the I got it covered, right with all the contact stuff. And then I'm going out for yoga, right and it's hot, and I'm doing you know, bendy stuff. And you know, you take off your shirt is a lot of people do. And then you're in a shirt, you realize you're the only one with like all this stuff. And it's like, it's not just one thing, it's the air, you got your pump over there. And he got your CGM patch over here. And it's like, it's not working out like at night. It's itchy. You know, it tickles. Except it's not tickle, it's you realize it's, it's itchy. And then you realize to your heart that that's actually the chemical burn that's happening with adhesive in your skin. And then the things alarming and I'm getting sick of the readings, I get data, what they call data overload, right where it says 240. And I feel like you know, I don't feel very good. And I take a bunch of insulin. And then, you know, an hour later says, well, you're 230 or whatever. So I don't like that. I still don't like that. So I'm going to take even more insulin. And then yeah, three hours later, you know, your doubt at 60. And the things reading 110. Right. And, you know, you're really not feeling good. This thing, made my life a mess. And I decided I'm gonna have to quit. And I was horrified that I was not going to use this thing that I had gone through so much effort to get to this point to be able to use it and that I wasn't going to get any benefits out of it. And the slap in the face for me as someone that was working on these on these systems of systems that were connected through the internet, and seeing the innovation take off and seeing the technology transform, collaborative decision making. The slap in the face for me was that this data was stuck on this little two inch display in my pocket. And there was like there was no way to get that data where other people could see it or like my doctor could see it where like app developers could put it into the simulator and make a simulator if one was missing, and 2009 and 2010 that really didn't sit with me anymore. So I thought apparently I have some skills here. And, you know, maybe I should try applying them just to see if I can get a time series. You know, wouldn't that be neat? If I can just get a little time series, you know, off the device that I use? Wouldn't that be kind of neat?   Stacey Simms  15:11 All right, I'm gonna stop you there. But as the time series,   Ben West  15:14 just the normal chart that we see where we've got data points along some time. So you've got three hours of time on the chart, just like we see with any other glucose traces data, you've got one dot every five minutes. And that happens, because you get every dot that you see is one of those data points. If you can get a bunch of data points over time, you can generate that time series.   Stacey Simms  15:37 Now I know a lot happened, you know, in those years between 2008 or 2009. And then 2013, when you started a tight pool, can you take us a little bit through that time, how you met people how you got connected with the diabetes community?   Right back to Ben answering that question. But first Diabetes Connections is brought to you by Dario. Health. And you know, one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels. Find out more go to my Dario comm forward slash diabetes dash connections. Now back to Ben answering my question about how we found and got connected with the diabetes community.   Ben West  16:48 I need to get more serious about my problem solving. And that means if I want to help, as soon as it seems to get a lot of ground to cover, so if I need help, I need to ask a well formed questions in a targeted way. And I thought, you know, if I need help, the people that can help me are probably other people with diabetes. And so I started looking around on all kinds of social media, I was on to diabetes, for the really early platforms, and several others, there's diabetes has that and there was there are a couple of organizations before Twitter was even really becoming popular. So I kind of reached out on some of those and found some people disagreed with the things that I was expressing they, some people thought that I should just feel grateful for the devices that I had.   Stacey Simms  17:28 I remember this, there was a lot of movement at that time, because I was on some of those boards to where it was, Hey, you know, it's it's okay for now. Like it's better than it was we're not testing with urine. We're not doing right. We're things are changing. Why do you want so much data? He was an interesting time. I didn't mean to interrupt you. But I remember that.   Ben West  17:47 Yeah. It's interesting that for you to say that, thank you for remembering that that really puzzled me. It emphasized for me How important was to frame the right questions. Partly because of that those disputes, I started really focusing on the advocacy of data access. And that became my touchstone issue. Well, up until very recently, I would say, well, I've shifted recently towards embracing language matters a bit more. One of the things I've learned over the last 10 years, I think, is that language matters. And in this data access issue, are actually the same issues with the same solutions. And we will get into that. But   Stacey Simms  18:23 yeah, we'll definitely talk about that. And just trying to, you know, to kind of get the timeline here, but yeah, so you, you've got this really interesting movement within the community, but it's a small part of the community. As I said, I was there. I don't think I grasped it at all. I mean, I had a little kid, my son was a toddler at the time, you know, he was diagnosed in 2006. So I was getting into all of this, but I was definitely more of the rah rah cheerleader, kind of let's do the Big Blue test. If you remember to diabetes, you probably remember that rather than how can I free the data because we didn't have a Dexcom or a CGM for many years.   Ben West  18:53 So at that time, right at the time, I was already familiar with things that have happened in the tech world, the things that, you know, the worldwide web, the web technology that we use, has gone through this where there's lots of companies involved, some of them compete. And in fact, I remember on one of my job interviews, I was shocked to hear the interviewer say, Oh, yeah, we're partners with the, you know, these other people. I said, Wait a minute, are they competitors for this other product? And they said, Yeah, you know, we compete and we cooperate. We do both, you know, it's not, it wasn't an issue in other industries. And somehow innovation that that's unlocked. Now, we have finance, we have healthcare, we have every sector of life we do online now. And if you're not doing it online, it's because you're doing it on your mobile. And actually, it turns out that's done online also. Right, yeah. Behind the scenes. And so that's the same transformation that I saw happening everywhere, regardless of the problem space of even for the most complicated problem spaces. And so I knew that what we need the thing that made that possible on the web, and on the internet on the web, it was Use source. So any web browser that you have, there's a function where you can go in and edit. And you can say view source. And it shows you all of the source code that's used to present that web page for you. It turns out that that's a critical part of that innovation to market pipeline, because more people are able to access the data that makes the thing go, that DIY access, if you will, for the web, that view source that allows anyone to get access to it, that does a couple things. One is that it gives more people access to making things and that network connectivity is what allowed a lot of innovation that we see, in 2008. Nine, that's when I started talking about data 2010. And yeah, through 2013, I started to code switch, which means that I talked about data in the most austere terms possible, in order to attract those other folks that already understood how important that was. So that together with them, I could look to build this ecosystem so that people would start to get it, I knew that if we could deliver a couple of applications that utilize this open architecture, this open ecosystem, the feature set would grow, the popularity would grow. And that would start to shift the things that people were talking about that people would start to talk about, we want access to the data so that we can get things like this, we want access to the data so that we can have bring your own device, we want access to the data so that we can get these innovative systems on the market more quickly.   Stacey Simms  21:37 So put it in perspective for me if you could, one of the touchstones that I come back to again and again, is that D data meeting in 2013? That diabetes mind and Amy tendril put together where we are not waiting was written on the whiteboard. Where were you during that time?   Ben West  21:54 Yeah, I was in the room. There are about a dozen folks in the room. Sarah creepin. Was there a Jana Beck was there, Joyce Lee? Was there, Amy tedric was there? You know, Howard look was there late despereaux. Was there john kostik. And, you know, a bunch of Brandon arbeiter, a bunch of those core typu folks were there. The takeaway, as it's been said many times before, was, you know, john kostik, was there talking about how he had utilized this technology to get some benefits for his son, that was his big story was I really care about my son is my job to deliver these benefits, I'm going to do it somehow, whatever it takes, that's what I'm going to do. And Layne came along and said, You know, we've got this experience with operator fatigue, in control rooms with complex processes that never shut down. And here's the things that I've learned. And here's the display that I put together, and I call it nightscout. And this was before, what we now think of as nightscout didn't really exist. This was before that this was like when there were separate pieces, and like different projects, everyone was just blown away by nightscout. In particular, this idea of what john was doing, getting the data and what Lane was doing, having a really smart interface for it, that and having it operate in real time gave us a really crisp, clear vision of what are the kinds of benefits that we should be talking about that we should be expecting that we should be seeing in the next 12 to 18 months? What is it feasible to make technically. And it turns out some really cool things were technically feasible.   Stacey Simms  23:26 When I speak to people from the DIY movement, or you know, whatever you want to call it. When I talk to you folks, over time, I have learned never to really ask well, what do you do? Right? I know, it's very, very collaborative. And so I stopped asking that question. But I would like to know, if you don't mind, could you share kind of what you were working on? Well, that's   Ben West  23:47 first t data, I was tide pool had just gotten started. So I was actually employee, I was one of the very early employees tide pool. So I was working with tide pool as an engineer trying to launch the MVP, our very first shipping product, we were trying to get that up off the ground from prototype and into production. So I was spending a lot of time on that. On my own time, I was spending a lot of time you know, the reverse engineering stuff, I was spending a lot of time really focusing on on Medtronic pumps, I realized that there were a bunch of devices. And I thought about the network of each kind of device needing some code to work with it. And I had a piece of code for every type of device. And so I was focused kind of on that making sure that I was framing Well, well formed questions, putting them out there saying here's a project just to talk to the Omnipod. Here's a project just to talk to the Dexcom. Here's a project just to talk to the pump. And then here's the thing that can kind of use them all. here's here's some of the title stuff. And so I didn't actually have access to CGM myself, I didn't actually have access to a lot of working stuff. What I had access to was my own research on my pump stuff, which was my main focus and then I had already started networking out and contacting Layne and these other folks, you know, Scott Lybrand and Dana Lewis, meeting all these other folks, and not just in diabetes, you know, for example, Dave bronkart and Hugo compost, I met them going around doing things, advocacy work on data access and privacy and sharing, I would meet those folks and connect them also to the diabetes folks saying, not only is this a unique problem in diabetes, getting your access to your data in healthcare is a problem in other disease states as well. And now what I've come to learn is not only does it affect healthcare, it affects other industries as well. It affects the agriculture industry. Right now, there's a huge issue in the agriculture industry, with farmers not being able to digital tractors and farmers not being able to get their data off of their digital tractor and where it used to be just like the syringe and it used to be a mechanical pump. It used to be a simple mechanical device that anyone could learn about and do it themselves right in front of them, it was obvious how it worked. And that is one of the risks with the adoption of digital technologies. without some support. Without enough documentation, it may not be obvious how it works. So after that D data in the winter, spring started to come around the next year, and I wound up leaving tide pool around April. Now Brandon arbeiter from typo was my roommate at the time. And I remember that about a week after I left tide pool he actually came home with with a bag full of goodies, he came home with a new SIM card, a new cell phone, and he showed me his laptop. And he had all these emails with like source code attached and instructions and websites. And actually, it was kind of a big mess. But I was very excited because this was for the first time all of the pieces in one place. This was the legendary nightscout rig finally in my hands, so I knew exactly what to do. I helped him set up nightscout. I didn't have a working CGM at the time and setting him up with nightscout was actually what convinced me to start using a CGM again, because when I quit, I decided I'm never going to use a CGM. Again, it's not worth it for the discomfort and the quality of life until I can control the data until I can get the data off with nightscout. that possibility came true. And so Brandon came home with that rig. And I helped him set it up. And then I helped set up a bunch of other families. And I converted those emails and those attachments, I converted those into a set of webpages for the very first time, and organized all of the source code. Again, on GitHub, which is the social coding site, I organized all of those projects into well framed projects, the way that programmers would work with these things very, very natively. Very idiomatically. And so I put those up on the web on GitHub, and started calling people over to them. And I showed James wedding and Kate Farnsworth, and Christine dealtrack. Some of these folks, I showed them the new web instructions, and actually walked them through for the first time, once people were able to go on the web, and do a Google search and find it and get all of the instructions in one place. That's when the installs really, really really started taking off. That's when the Facebook group went from 100 to 1000s. And the rest is history right?   Stacey Simms  28:35 down. And this is probably a good time to just say that. I've spoken to several people from the the we're not waiting community, and one of them is Jason Adams, who tells the whole story of the Facebook group, and you know, that community and how that came to be. So we'll link that up for sure. and a bunch of other information. But I remember that too. And it just seemed like he was unbelievable to some as in like, wow, we can finally see this and can you believe we can do it, you know, ordinary people. And you know, you do need to, you know, get some help, but you can do it, you can do it. And then there were other people in the community saying, I can't believe we haven't been able to do this until now. Like I knew we could do this. Like, it was very funny to see the people who really understood kind of the back end of things, at least from my perspective. And once that ball started rolling, it seems like it was just moving really quickly. It was a very exciting time. Do you remember it as one?   Ben West  29:24 Oh, yeah, I mean, tide pool had a one of their global, they pull everyone from across the globe in the area everyone saw about once a year. And so I got to see a bunch of those folks again, and they were all hanging out. And I remember we were on Facebook just watching Facebook blow up. I mean, they're the posts were coming in, he and your grandson was watching this thing. We mocked up little videos of like, here's the next step that we're going to make an automated system with, you know, this is just the beginning and we didn't post it but we were just in awe of the energy that was coming. In behind the post describing nightscout. I mean, here we have what's essentially a webpage. And there's so much momentum behind this project that people were saying things like we're paying it forward, they were saying things like, we are nightscout. And I've never been part of a technology project where people start identifying as the project, I expected the conversation to change, I laid a lot of a lot of stepping stones in place, to enable the conversation to change that we can speak clearly, as people with needs that are unmet, here's what our needs are. But I did not expect people to identify that I am this products that really blew us away.   Stacey Simms  30:42 I'm gonna come back to that, because I think diabetes is very personal. And it was one of the few times where people felt like they not only had a stake in it, but they were also being heard. But I do want to ask you, we've done lots of episodes on nightscout and openaps. And please feel free to jump in if there are things that you would like to share. But you mentioned when we were prepping for this interview testifying for I don't even know how to say this testifying for the 1201 federal DMCA exemption hearing.   Ben West  31:08 Yeah, that's right, is that? Well, like I said, one of the things I started to learn, when I started talking to people, what I would code switch into the data governance language, I started to find that there's other people working on this. There's academics, there's people in other industries, and there's legal scholars. And it turns out, FDA has a role in a lot of what we do in diabetes. But it turns out, there's other regulators that deal with other parts of life, the Library of Congress regulates certain things. And one of the things that they do is they manage these 1201 hearings, our carve outs are ways for the public to say, here's this regulation that exists. But I want to testify to get relief from the regulation that does exist, and the regulation in question, this concept of DMCA, the Digital Millennium Copyright Act, and in part of that regulation, has to do with the technical protections, the technical protective measures that manufacturers place inside of their devices, and the consequences for attempting to manipulate that device, potentially to overcome such a protection. Now, the issue here is that this is a technical means that some firms use to make it difficult to get the data on a very practical level, the one of the things that they can do is they can say, well, we're putting a technical measure in place so that only authorized users can get access to the data. who's an authorized user? Well, the manufacturers, of course, is the patient an authorized user? Well, maybe maybe not. Right? That's kind of the debate that's still playing out to this day. One of the exemptions that I went to testify for was that for medical devices, if what you're seeking to do is to get a copy of your own data, there should be no penalty for doing that. And that exemption was granted. Pardon my ignorance,   Stacey Simms  33:03 is that exemption granted for you? Or was that something that was more blanket for   Ben West  33:07 the Americans, all US citizens,   Stacey Simms  33:09 you think that would be front page news? That's amazing. Very, very cool.   A lot more ahead with them. But first Diabetes Connections is brought to you by Dexcom. If you are a veteran, the Dexcom gs six continuous glucose monitoring system is now available at Veterans Affairs, pharmacies in the United States, qualified veterans with type one and type two diabetes may be covered. picking your Dexcom supplies up at the VA pharmacy may save you a lot of time to connect with your doctor for more information. Dexcom even has a discussion guide you can bring with you to your doctor, get the guide, find out more about your eligibility go to dexcom.com slash veterans. Now back to my conversation with Ben West.   What is nightscout? Right now? No, the commercial offerings have changed a lot. He was title submitting loop to FDA. What is nightscout as a service offering right now or is that even the right word offering?   Ben West  34:20 So do you want to know about nightscout as a service, or just nightscout? What is nightscout as a whole?   Stacey Simms  34:25 What is it right now? What is it? Like? How do you define it right now? Because it's not the rig? Is it still right? It's not like you're plugging into this into that. I mean, what how it's kind of changed in the last few years. So I guess I'm not sure what I'm asking. I pardon my ignorance there. But   Ben West  34:39 when you bring up the rig, you say what is your asking what is nightscout? right now and you mentioned, you know, for example, it used to be the rig.   Stacey Simms  34:46 That's what I think it was nightscout is I think of people printing a case for this for that and then and then you got to be careful because the wire might break at some point.   Ben West  34:55 Sure. So I think of nightscout as kind of two things. There's the philosophic Typical version of nightscout. And then there's like a piece of software that also exists, right? So and what I mean by that is there's the nightscout ecosystem, right. And this includes the people that are using nightscout. It includes the coaches, the school nurses, the teachers, the clinicians, the parents, the guardians, the caretakers, and the patient's themselves, right. And so there's this thing, that is the network of nightscout. And then there's a piece of software. And in fact, there's a whole bunch of pieces of software and devices, right. So there's the cgms, whether it comes from Abbott, or from Lee Ray are from Medtronic, right? There are the insulin pumps, whether they come from Medtronic or maybe Tandem or maybe Insulet, in the United States. And then there's other kinds of devices, too. There's like cloud devices, right? So some of your Dexcom data goes to Dexcom Cloud, some of your Medtronic data goes to carelink, Medtronic cloud. And so nightscout, there's a lot of ways for data to exist in the world of devices, connected devices that data can come from. And then there's this central hub in the cloud. And that's the piece that usually I think of as nightscout. When people say, Oh, I'm going to go file a bug report on nightscout, or developer says, I'm going to go fix a bug on nightscout. Really, they're talking about this cloud native piece of software that draws the graphs that provides you with a web page, the API that all of the other devices then connect to, right. So that forms when all when you have multiple devices that are talking to nightscout, all of a sudden, you have this nightscout network. And the thing that we think of as nightscout is what I like to think of is that cloud piece of software right in the center of it all.   Stacey Simms  36:44 So this might sound silly for someone who hasn't used it, or doesn't really understand what is nightscout. in that setting, as you mentioned, what is it used for? How does it help somebody with diabetes,   Ben West  36:58 one thing a lot of people talk about is data governance, being able to control your data. And that's certainly true, I have found that the most profound thing I have found is that it's really this, this concept of sharing, when you invoke the buddy system in your life, you know, as you travel through life, is it during the transitionary events, when you start a new therapy, when you have a special day, and you want some help, and that these are the kinds of things that people are sharing, it used to be when we first started nightscout, almost 10 years ago, seven, seven years ago, it was all about let's at least share what we know about the past. You know, let's share the alerts and alarms. Those are retrospective, right, you have to have past data to generate an alerting alarm. And that's kind of like current and past data. And people would use that the classic use case there that that made the news was when parents go to the office, and the children are going through the school day, and maybe going through mixed authorities and different just different realms of concerns across as they travel through life. What we have found since then, is that it's not just the retrospective data in terms of keeping current that people want to share. It's actually every aspect of diabetes. Surely, if you had the technology and the power, to share your alerts and alarms with me, surely you can share the tools to help me prevent those alerts and alarms. That's where the future is going is we're gonna see services that allow sharing, not just alerts and alarms, but managing every aspect of diabetes as we transition through every phase in our lives. So this is a really exciting time to be in because nightscout is years ahead of some of the big vendors here, providing feature sets for all of those things.   Stacey Simms  38:47 It seems like that's a good segue into medical data networks. Can you talk about what that is and what the goal is? Sure.   Ben West  38:54 So I've always been interested in this concept of the power of networks. That's one of the things that really got us interested as we started building out the nightscout ecosystem, making sure that we could talk to connected insulin pumps, making sure that we could talk to connected CGM, and talking to people about the data governance and the technology required to do that. In the past, I worked for a company called muraki. They made software defined networking. And that means if you've ever used Wi Fi in a public space, like Pete's coffee, or an airport or something like that, my software has protect your privacy, govern your use of the network govern the speeds at which you can use the network even govern which sites you can visit. And this is very complex techie stuff, but we made a simple dashboard that allowed people to share the process of managing that experience. This is old hat for us. So we created this company medical data networks. What we want to do is wrap up and respect all these years of innovation that have happened in the DIY space and we want to make Set the norm. We don't think that any of this is controversial at this point, the idea that you'd have remote monitoring, the idea that open source would be a fertile ground for the innovative wetlands, right? Some people like to call it. And so that's part of what we're doing. And so now we're offering nightscout as a service. And we make nightscout. press button easy. And we're working with the FDA to make sure that we can operate it fully compliant.   Stacey Simms  40:28 That sounds to me like you're trying to offer kind of a DIY the nightscout for people like me who, when many others who were you know, reluctant to do DIY stuff? Is that what the service is? It's a Is it a paid service that I can kind of this is an awkward way to say, like commercialize or make simpler what nightscout has been?   Ben West  40:48 That's right. So we want to offer Nightscout as a service and reduce the barrier to entry, make the entire experience much more reliable, predictable and consistent. And we want to increase the benefits of remote monitoring for everyone, whether that's caretakers and parents or temporary guardians, or whether it's just people that just want to find their diet buddy on social media and share it with them.   Stacey Simms  41:10 Thank you. So tell me a little bit about what T1Pal   Ben West  41:13 is? Sure, I'd love to. So T1Pal is our first product from medical data networks. And it leverages all the experience that we had building nightscout. So T one path is Nightscout as a service. So you can think of it as the easy way, it's a new way to get started with nightscout. And it eliminates all of the server and database administration and DIY craft. So it makes it as easy as any other platform where you simply sign up, you pay for your subscription, and you have access to all of the benefits that Nightscout brings.   Stacey Simms  41:46 Is it on the app store? Is it something that people buy? How do they get   Ben West  41:50 Dutch the website to one call.com, you   Stacey Simms  41:52 can go on your browser. Either commercial products have kind of caught up I mean, I can remote monitor my son with a Dexcom. And you know, t slim or Tandem has an app that is on my son's phone. And I guess eventually I'll be able to see that Omni pod is sharing more, what makes this one better?   Ben West  42:11 Well, there's a lot of things. One is the if we go to the connectivity piece, right, this idea of interoperability, and the idea of bring your own device, when we talk about sharing, there's a the base level that I start with is bring your own device I want to share with myself, I want to share I have this Samsung or Apple or whoever created a brand new thing, you know, last week, it's a shiny new thing, I want to go get that and bring that into my therapy, that's going to be part of my system. Now, that's really tough for a lot of these vendors I've been just I've been it's ago, I was looking at a brand new error that someone posted that I've never seen before on, you know, a Dexcom app. And it says it's incompatible in some brand new way. So this idea is really tough for the classic manufacturers who developed these really austere quality systems, right, and those quality systems control for change in the system. And the idea is you want to control your own destiny, and eliminate any possibility of variation. And so in a lot of these systems, what that means is we're going to test on exactly these versions. And anything that we add to that means increased workload that we have to go test. And so we create these haves and have nots. In a world that moves as fast as the one that we're living in where bring your own device, bring your own connectivity, this is the norm. Now, I think the industry, we just need more help, we need more players that are experts in this kind of connectivity in this kind of interoperability to make to satisfy the customer's demands. That's really the area that we specialize in is this idea of Bring Your Own Device connectivity. So that's one and then the other is this idea of sharing a lot of these systems, they're built for that initial use case that we discussed, where it's really oriented around the concept of the nuclear family. And you we know you have exactly these many family members and exactly these roles, and that's the way it's gonna work. Or if you want something else that starts to not work very well. You know, if you want the school nurse to have access during school hours, that doesn't really work very well. The idea of sharing, does it really require installing patient? Or is there a web app that works on any device? Those kinds of things, I think Nightscout still has a really compelling advantage. In addition to all the features, she talked about all the watches, there's more than 20 watch faces just for Garmin for Nightscout.   Stacey Simms  44:44 Right and that's just the one brand Garmin there's the all the other ones the Apple Watches smart, the Google wears, etc. fitbits when you see their watch faces, you still need your phone, right? Has anybody gone direct from Dexcom transmitter to phone yet is that maybe some You're working on?   Ben West  45:01 Oh, no, I, I can't say much about that.   Stacey Simms  45:03 Can you confirm it's really hard because that's what I hear from my friends in the DIY space that I've been bugging for five years about this.   Ben West  45:10 What I will say is that this idea of interoperability and connectivity, the idea that you're actually operating a network networks and decentralized systems operate on fundamentally different rules than closed systems that are composed of one unit. And device manufacturers specialize in kind of making these one units or boxes of units at a time. And they fill the shelves with those units, this mode where you start operating in a network with multiple devices that are connected, and you have decentralized emergent behaviors, this is a difficult area. So a lots of technologists that I've worked with agree that nothing's impossible, it's all software, we can make it do anything. But it does require willing participants that are collaborating.   Stacey Simms  45:54 One thing that I have found of talking to you over this time is you're very generous towards the commercial systems, you know, there is no, and I think this is very genuine, there's no bashing, you're not trying to put anybody down, it seems to me and you can correct me if I'm wrong here, this is how I feel. So maybe I'm projecting that there is a really important place for these commercial systems with their very, you know, big, you know, simplicity, they have to be able to be used by a vast majority of people with diabetes, they have to be understood by clinicians. But there is this also really, really important DIY focus that we've seen over the last almost 10 years now. And I do think that I wish there was more cooperation, but they are almost complimentary. And when they're both needed, am I off the mark there? Or am I kind of reading between the lines that you may feel a similar way?   Ben West  46:42 I agree completely. Stacy, what we have is a market full of people with this inhumane disease, right. And this inhumane disease demands all kinds of things on our time and our resources. And because it's inhumane, there's a lot of needs. Now, these companies solve problems in consistent and reliable ways for people. And that's what we need, we need to all as a market, we need a functional market that's working efficiently. That's providing high fidelity health care that provides a reasonable return on investment in terms of the fidelity of care, the more resources that we spend health care and wellness, we should be seeking a return that yields the kind of fidelity commensurate with the spend, right. So in diabetes for a long time it was you could go try and try and try. And you could try as harder and harder and harder as you'd like, a day to day may not be the same, you may not get the same results. And so trying harder is perceived as not worthwhile. Because there's no feedback loop that provides the yield that's required. I think that what we have is a world that's changing with technology really, really fast. And we have an ethical imperative to use that technology in humane and equitable ways. I open sourced all of this software when we got started, because for me, that was part of this, the scientific methodology of it all is someone else should be able to take this software and debug it audited, etc. That was a really important working principle. For me. That's exactly what we need is we need a working process and all of these domains, we need innovation happening. And we need a pipeline that can deliver the benefits of those innovations in an efficient way to the most number of people possible, as quickly as possible. And why? because as we know, this condition, this intensive insulin therapy is just an inhumane condition, it demands too much. And so I'm imagining a world where we can work together, we can have a bolus free up lane free therapy, we can have Bring Your Own Device connectivity, and have full remote control, we can have the supercomputers and the the networks and the people that are connected to our devices and our data work in a collaborative way to prevent repeated hype hyperglycemia repeated insulin reactions, and we can use that data equitably and humanely to deliver high fidelity healthcare. And   Stacey Simms  49:08 that's the vision. You've talked about diabetes 2.0. Is that what you're referring to?   Ben West  49:14 Well, that's an idea. I've been workshopping. I'm hesitant to use the numbers for all kinds of reasons. I have talked to people, not just children and parents, I have now talked to people that have had type 1 diabetes for 40, for 50 years. And they are telling me that this network effect that we have created is one of the most powerful things that's that's happened in their lives. I don't know how to respond other than to try to do more. We've got feedback now from parents and children from people in their middle age and from people that are now experienced 4050 years with diabetes, telling us that this has had such an impact that everyone This should be the standard of care for everyone. And I think When we look at what we're doing today, we're still in the early days, we still haven't really optimized for the next gen system where people are really living their lives really free of the blame and stigma. You don't have the blame for getting a bolus wrong, or for carb counting wrong. Because either because you can share it with someone, you can share this complex dosing decision as it transpires right, you can share it with your buddy, you can share it with an expert you choose, you can share it with someone you trust on demand, or someone could do it for you. That's what we're seeing it for a lot of these parents in school, now it's run day, or it's Testing Day, and the parent can manage all of that stress remotely. That's where we're going even with automated systems. That's what we're seeing. Because the demands as you travel through life, the demands change, and sometimes it's fine to coast and let the machine handle it. Sometimes it's necessary to find, invoke the buddy system and find a friend. Yeah, you know, you've   Stacey Simms  50:57 mentioned a couple times now bolus free blame free. Can I ask you just to kind of dig in on that a little bit more, because I love that concept of if you aren't deciding to give yourself insulin for a meal or for a high, if you can't mess it up? How can you feel bad about it? And I think when you're an adult with type one, or if you're a parent making decisions for your children about this, this guilt, this mental health part of it is so overlooked.   Ben West  51:22 You're so right, Stacy, I call this the onus to bolus Yeah, the onus to bolus so what we've done is we've made out of necessity, we have a system of intensive insulin therapy that requires multiple daily injections. That's been the standard since the introduction of insulin. And then more recently, continuous subcutaneous insulin injection, right? See a society that's classic pump therapy for a brief while we saw the introduction of what's called sensor augmented therapy, sensor augmented pumps, which is where you pair the glucose readings with the insulin pump. And then more recently, we have the introduction of these automated insulin dosing systems, hybrid, full, etc. What all of these systems do is they help address the symptom of diabetes, which is high, uncontrolled glucose. And insulin is the mechanism that we have to bring that glucose back down and under control. It's amazing that this works at all, I sometimes just marvel at how incredible it is that we can manually take this missing hormone insulin, and just dump it in the body almost anywhere, it seems. And it works in the sense that it does provide this temporary relief of controlling that glucose, as we know that balance is extraordinarily difficult, because it is our responsibility to get that right. What happens is, if you get it wrong, it's kind of your fault, especially if you've been given a calculator where your job is you just have to put in the right number. And you know, the calculator will spit out the right number for you. And now it's your job to carb count, or count the number of fat and then deduct the fat and link out the number of fiber and the deductor fiber. And then by the way, for the delay, you know, due to other effects due to the fat, or any alcohol on board, anything like that, or because of sickness or you know what, maybe not feeling well. And actually, you lose your carbs, right? after you eat and you lose the carbs, it just becomes so tricky. One to even know when it is you're going to eat to know how much it is you're going to eat. Three know how that's going to digest. And we could go on and on and on all day about the trouble with this thing. But the problem is, when the language comes up for how we talk about this, we talk about Did you get it correct? You know, we use the words like correction factor, we use the words like correction bolus. I've heard parents actually talk to their children and say go correct yourself. And I've never had that experience, because I was diagnosed in my 20s. But the experience I have had, and this was in my 30s, I was doing exercise in a class and I had an insulin reaction. And you know, I had to take a break out of the class, I really wasn't feeling well, right. And it's really, it's never pleasant when that happens for so many reasons. But one of the biggest is always you're just you're othered you're not part of the group doing the activity anymore. You're often in this weird thing. And often it's involving bloodletting in front of everyone, right? I mean, this is not good. And then so I'm having this conversation afterwards about, you know, here's my CGM. Here's my pump. And, you know, this instructor goes well, Oh, isn't that great? That is doing all that for you. Great. So the reasonable person when they see all of these devices, they're expecting it to do all of this already. Right? That's that's the reasonable person's expectation. I had to have a 15 to 20 minute conversation explaining, well, no, it doesn't really work like that. I have to take the CGM number, I have to guess if it's right. I have to get some blood to make sure. And then I have to do this thing. And then you know, I have to take the right I'm out. And the response right away, this still affects me was. So does that mean you just did up? When I explained how the mechanics works, the onus is on me the onus to pull this is on me to get it right. And the entire system around this is designed to make sure that it's not anyone else's fault. As it should be, it should not be anyone else's fault. If it's going to be someone's fault, it should be mine. But the entire system is designed to dock the way that you interact with the doctors, the therapy that they start you on is designed so that they're not going to kill you. They don't want to kill you. Yeah. And it's designed to just keep you alive, and they'll try to figure things out. You know, after that, let's keep you alive. First, the way that design happens in manufacturing with these vendors, I call it defensible design. It is designed so that they will not be held responsible for something going wrong. That's the way that it's designed.   Stacey Simms  55:53 It's interesting, because so many thoughts flashed through my head when you were talking about those things in terms of blame a lot of parents and I speak on this to try to get them to stop, but a lot of parents call the a one c visit to the endocrinologist their report card, you know, it's mom's report card. And that's a really tough way to look at this. But I understand why. And another thought I had was when we started with control IQ, about a year and a half ago now, I was just gobsmacked on how many decisions it makes it can make something like 300 decisions a day and how we were and I say we because you know, I mean, Ben, he was diagnosed at two. So I'm still going through the process of saying his diabetes, not our diabetes, so forgive me. But you know, he's a once he went down, his time and range went up. But it really showed me how there was no way for me as a parent of a toddler and a little kid and a middle schooler. And there was no way for him as an individual to keep up with that machine. And that machine couldn't even be perfect. And I got to tell you, well, it was frustrating to say okay, the machine can be perfect. It was so freeing to be able to say I had no chance, if that makes sense.   Ben West  56:58 That's why I chose the word inhumane stage, is when you see what it takes for success, you realize you didn't stand a chance. And we have to find ways other than blaming each other. We have to use technology and in this in this way to make this possible.   Stacey Simms  57:15 Thinking that way, then, let's talk a little pie in the sky here. Obviously, Dream stuff with technology isn't gonna happen next year, or maybe even the next five years. I don't know what the timeline is. But what do you want to see? I mean, can you give me some, and I'm going to put you on the spot, but maybe some concrete examples of how that bonus to bolus could be lifted?   Ben West  57:35 Well, there's, there's a number of ways to address this. You mentioned other technologies, other therapies, there's certainly so many capabilities, we're adding to our tool belt, whether that's new therapeutics, I've heard of people taking other hormones, other injections, supplementary injections, that that seems to really work. Well. For some folks, we've got faster insolence coming relatively soon, some folks are working on, you know, micro dosing, glucagon. And then there's there's other types of therapeutics as well. So there's all kinds of things it's really difficult to know, a lot of that is out of my wheelhouse. I'm a software person, I know how to manage cloud, we know how to do transformational services, digital transformation, right, we know how to manage really complex stuff, using technology to provide a collaborative decision making process, it's in the power of the web, or society as a whole. That's why I wanted to become a technologist and work on the web as a whole was this idea of the collaborative power of sharing. That's my big bet. That's the thing that I get really excited about, I see automated dosing systems are coming faster insulins are coming. And those are all great, they're going to be so profound and helping people. But at the end of the day, with these therapies, you're still facing exactly that you're facing a lifelong journey with other people with this experience. And my big bet is that this need for sharing is so fundamental that that's why sharing is being adopted in every part of software that we look at every piece of technology that we get first. It's like a solo experience. And then eventually, it becomes like a collaborative social experience. that's been true of a lot of different kinds of software. And I think that we're going to see the same thing in diabetes care that we'll see clinics that will embrace the digital technology, so that instead of having appointments once every 90 days, or once every six months or once a year, whatever it is that you're going to get connected to the people you trust in the experts you need just in time and on demand. So if you're someone if you're using one of these fancy pumps that's connected to supercomputer and connected to a network, there should be an agreement for how this is going to work. If you're going low. lifetimes per night. What is the pathway for someone to intervene for us to deliver the help that you need? Because I'm pretty sure no one wants to go for an insulin reaction for a sixth and seventh night. Yeah, I'm pretty sure there's some consent that can be arranged. There's got to be some design there. Right, where we're going to eliminate this. When I think about the remote overrides, and the overrides features that are happening right now we're, you know, we're playing around with things like sleep mode, things like exercise mode, those are dosing decisions. When you decide to invoke sleep mode, or invoke exercise mode, the algorithm is changing its dosing slightly, it turns out that all dosing decisions are just really, really hard. You can't turn on dosing. On exercise mode, when you start exercising, you have to turn it on hours ahead of time, right? Like those kinds of things. Maybe we could share access to those things. One of the examples that I've been learning about recently is, is this remote overrides where the teenager is doing testing, and it's stressful on test day, and your attention is supposed to be on taking the test. It's not supposed to be on managing diabetes, and in fact, playing around with diabetes devices, which is how it's gonna look like to the proctor to the school that you're just playing around with devices, that becomes an issue. Can you trust the proctor to handle these devices, etc? Well, guess what, with remote overrides this idea of remote controls and sharing your dosing decisions, that becomes a non issue. I've heard of parents and teenagers coming up with a plan for the day, okay, it's testing, here's what's going to happen. Here's the schedule we're going to go thro

Eight years ago, you could use a CGM but you couldn't share the data. Dexcom transmitters didn't connect to phones and parents and caregivers couldn't Follow anyone. That started to change - and change quickly - in 2013. That's when John Costik posted a photo on Twitter. That photo showed John's laptop, at home, monitoring his son Evan's blood sugar while Evan was miles away, at daycare. John soon linked up with others who were also working on improving existing diabetes tech. That was the start of Nightscout and a host of other "We are not waiting" improvements, many of which are now integrated into commercial offerings. This interview with John is from October of 2015. He has since left his job as a supermarket software engineer and is currently the director of digital product development at Beta Bionics. That's the company founded by Ed Damiano that's developing the iLet insulin pump. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! -----   Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription Below   Stacey Simms  0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of did you know stuff.   Announcer  0:13 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:19 Welcome to a classic episode of Diabetes Connections. As always, though, we aim to educate and inspire about diabetes with a focus on people who use insulin. These classic episodes are something new this year, we are bringing back some interviews that are from the very first year of year and a half of the show. We started in 2015, coming up on six years. So there's a lot of episodes that newer listeners haven't heard. And it's kind of fun to go back and give some perspective. I like revisiting. I'm emailing everybody that was featured. If they're getting a classic episode, I'm sending them a text message or a DM or email or you know, I'm just getting in touch with them to say anything you want to share, you know, any new stuff. And it's been really fun to reconnect with some of those previous guests. I’ll be honest with you, I have really hesitated about bringing by older tech type episodes into this run of classics. We did a lot of interviews, like we do now with the pump companies and technology and things like that. And I think it could just be kind of confusing if you're a newer listener, or if you know, you put a classic episode on and you're thinking it's new. But I mean, let's say I run an episode from 2015, when Dexcom, for example, is talking about an upcoming piece of technology that now in 2021, is outdated or never happened. So I'm purposefully avoiding most of those interviews. If you're interested, though, there's a great search box. I'm really proud of the website. It's very robust, you can go and search the 372 episodes that we have put index calm, see how its evolved over time, put in animists and find out what happened, you know, that kind of stuff. Some of those types of interviews, though, especially from the Do It Yourself community are, in my opinion, very valuable and very much worth revisiting. So that is the topic for this week. All right, come with me now let us go back to the olden days of diabetes back before 2013. Now I know most of you that's not the olden days for real. But you think about what has changed since then. Before 2013. It was a time where continuous glucose monitors were used. They were around we were at the time using I want to say the g4 Platinum pediatric. But you know, you could use it, you had a nifty little receiver, but you could not share the data. And it I don't believe in 2013 it was on anybody's phone, you definitely couldn't share. Then we saw the tweet. I've been on Twitter since 2008, thanks to my radio days, but I can't say that I was following john Costik at this time, but he was retweeted by somebody else I knew. And I saw this amazing thing. It was a dad watching his young son's blood sugar. On the dad's laptop. The kid was in daycare, the dad was at home, they were across town from each other in 2013. I started following that dad, john Costik. And of course, I was far from the only one john linked up with others who were also working on improving existing diabetes technology. And all of that was really the start of nightscout and a host of other we are not waiting type improvements, many of which are now integrated into commercial offerings. We are going to revisit that time with john Costik in just a moment and catch up on what he's doing now. But first Diabetes Connections is brought to you by inside the breakthrough on the surface. This podcast is a collection of fun, entertaining and even surprising stories from the history of science. But host Dan riskin digs deeper and he really does entertained while drawing connections between these stories and the challenges faced by modern day medical researchers. The latest episode it was just released a couple of days ago. It is wild Dan explains why it took a dozen people 200 years to discover and then undiscovered a planet. I love this podcast. I'm so glad to partner with them. You can search for inside the breakthrough anywhere you listen to audio wherever you found this podcast and if you are listening through the website or social media, click on Diabetes, Connections COMM And you'll see the insight the breakthrough logo. By the way, good time to remind you this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. A couple of things to know before we jump into the interview, I did reach out to john Costik of course, as I mentioned, and he said let's let folks know I'm hard at work on the islet and its digital products. He is currently the Director of digital product development at beta bionics. He would love that and he says hope you're doing well Stacey and if you are not familiar in the islet is the product from Ed Damiano. We've had him on the show a couple of times beta bionics is the company that is now developing it The islet is finishing some clinical trials this year and should be submitted to the FDA. Pretty soon I am speaking to the folks at beta bionics about coming on the show and giving us an update. So we will work on that as well. But also remember, this is from the fall of 2015, there are going to be dated references. I just want to kind of keep that in your brain. Because while it's fascinating to take a look back, you have to keep in mind as you listen, this is nearly six years ago, but I gotta tell you, I'm just as excited listening back to this interview as I was when I first saw that tweet, John Costik. I am thrilled to have you as my guest this week. Welcome to Diabetes Connections.   John Costik  5:41 Oh, thank you. so thrilled to be here.   Stacey Simms  5:43 Thank you very much. Let's talk about how this all started. Your son was diagnosed in 2012. He was four. But unlike a lot of people who have children diagnosed at any age, you had more technical knowledge than a lot of us. Can you take us through first, you know your diagnosis story, what happened to lead you to find out that your son have diabetes? And then you know, what made you think to look at the equipment and think well, this isn't good enough.   John Costik  6:11 Right? So it was late summer, end of August 2012. And Evan was showing sort of those classic signs that now we know are classic signs, right that he was thirsty all the time peeing all the time and just, you know, little get more lethargic as the day went on. And the 24th was a Friday and my wife Laura went over to pick them up from daycare surprise him with an early lunch. And when she got there that the instructor said, He's so thirsty, he's crying. So she called me and I was out for a run on the canal path. And I remember, she told me what was going on. I said, That's not good. And, you know, he's been really thirsty and really sweaty. past couple days, let's I said just, you know, both of our guts, were telling us, let's get into the doctor. So she called our primary care. And on like most appointments, where they're like, Well, yeah, we'll see you in a couple days, they were really quick to say, Okay, come in, at one o'clock, then, you know, so like a one hour delay from the time they called. So little did we know they I mean, they knew pretty much right away what it was. So as soon as they got there, of course, he had to go to the bathroom. So they did urine check. And he was clearly spilling sugars than they needed to finger check. And he maxed it out. And they basically said, we're gonna call the hospital, you get in the car and just go to the ER, we'll tell them. You're on your way.   Stacey Simms  7:42 Did you know anything about diabetes at that point?   John Costik  7:45 No, no. And this was Laura was at the doctor. So she called me I was at work at this point. And it was just like, getting hit in the head basically. And yeah, my, my knowledge of diabetes was very limited, much some family members that were type two, and I knew there was no type one and type two, and one was curable, one wasn't. And that was mostly because growing up my mother, my mother, she still is a nurse, but she's retired. But she was the school nurse. And there were a couple kids with type one. And I remember just hearing stories of her having to, you know, go to people's homes to pick up their insulin for them if they forgot it. So understanding that type one was distinctly different, I at least knew that much. But the next three days at the hospital, obviously, they put us through the type one boot camp, and send you on your way, basically with vials of insulin, and, in our case, humalog pen, and we had to sort of figure it out from there. Yeah, they gave us the general guidelines for how much insulin he may or may not need, how much lantis to give him. And we were on our way.   Stacey Simms  8:53 Now, it seems like you started on a continuous glucose monitor pretty quickly, how soon after you got home? Did you start thinking about that?   John Costik  9:00 So it was mentioned to us while we were at the hospital by the endocrinologist that diagnosed HIV. And at the time was the Dexcom. Seven, and the I think it was still the Medtronic soft sensor at that point. So those were the only two that were shown to us. And he said, okay, it's a lot of information up front. So we actually went with shots and did a lot of finger checking, initially. But one of the one of the things we recognized real quickly, was the ability to to log this data and communicate this data was sort of hampered you know, if the nurse was writing things down in a log book that didn't inform Laura and I how Evan was doing during the day. So the first thing I did was set up a website for logging, you know, nutritional data, finger checks and how much insulin we were giving him. So that was within probably a week after diagnosis had some semblance of that. And that was to prepare him for going back to daycare. So we could all stay in the loop. So that system would send Lauren an email, a text message whenever a treatment was entered.   Stacey Simms  10:11 Alright, so then a few months later, though, you decided to go with the Dexcom. g4.   John Costik  10:15 Yeah, we started looking around, so around November when I got approved. So I immediately signed up for all the diabetes technology, news letters and everything I could and started, you know, as, as my mind kind of settled down from the diagnosis. You know, I started looking to see what can we use to keep him safer, healthier, both in the short term and long term. And the g4 was approved, I believe it was November in that ballpark of 2012. So I began the process almost immediately to get that it took a while to get it through insurance. Because they actually like to see hypoglycemia before they'll give you tools to avoid it.   Stacey Simms  10:52 I know. And if you do, too well, they want they might take it away. That's the craziest part.   John Costik  10:56 No, no, your son's still healthy doesn't need the thing that's keeping him healthy. Yeah. So. So unfortunately, or, you know, he did have a low in January, that basically put us over the edge. Then they approved it, and we had it in, you know, the second or third week of February 2013. And that's when we began using that. And does that mean immediately it was sort of a revelation to have this second order data, this trend data along with the blood sugar, just so to know directionally where he's going. And you know, what's happening in those periods that we were blind to before. So immediately after meals, we'd see these big spikes that come right down. But, you know, got our mind spinning on, what can we do to improve that? And at the same time, when we sent him to school, is there any way for us to have continued access to the CGM data?   Stacey Simms  11:52 Now you both you and your wife both have backgrounds in engineering? Correct. And so this was something that you looked at, and what did you think of the system because somebody like me, you know, I was a communications major in college, I've worked in broadcasting my whole life. I looked at the CGM. And I thought, Wow, this is so great. How could it get any better? You looked at and thought this is the dumbest device in terms of talking to anything else?   John Costik  12:14 Right, but but I understood the position that everything sort of has, has to go through that growing cycle. So I understood that. So I also my wife worked at an FDA regulated company. So we had some idea that putting a medical device online and presenting that data to people is more daunting for the commercial entity than it would be for us as individuals to just extend it. So we I mean, we were never, I never really railed against Dexcom. In at the time, I think they had sort of shown off some semblance of share, or there'd been some patents that came along that indicated that they were clearly moving towards remote monitoring at some point. But it wasn't something I was going to wait for. Right. So I have the CGM. Now this great device, I have a laptop that can talk to it. And I know, I can take that data off and send it to a cloud service. Or, in our case, we just started with a simple Google spreadsheet that we sent the data to. And then I wrote an iPhone app that pulled that data down and your web app, so the school could just see, you know, his current blood sugar and trend. So we integrated that with with our care portal website. And that was powered by a laptop top load. So initially, I just used a repurposed Dexcom zone, what I call a DLL, linking library dynamic linking library. So that's basically just a program that allows you to interface programmatically with the receiver. So I just repurposed that wrote a fairly simple Windows application to just pull that data every five minutes, and then upload it to that. Like I said, that Google spreadsheet.   Stacey Simms  14:02 Okay, so I'm just curious, was it hard for you to do that? Did it take you a long time? Or did you sit down and tap the tap tap? You know, you're done. You got it?   John Costik  14:10 It wasn't, wasn't challenge. So my background in software, I it was relatively recent background, but it was all focused around windows code, and specifically writing these sorts of libraries for other hardware devices. So I understood if I took their library and put it into what what I would call, you know, a software project, that I wouldn't be able to see exactly the interfaces that could pull that data into my own application. So it really only took probably an hour or two, to write to write the basic windows uploader.   Stacey Simms  14:46 And then you put this picture on Twitter. I don't know how long after that said, Look at what we're doing. Isn't that interesting? And did you expect the reaction that you got which was basically jaws dropping around the country, saying how Do I do that?   John Costik  15:01 Yeah, that's, I took some pictures of the windows one initially. And that didn't get a ton of attention. And when when I started going after a truly ambulatory like a mobile solution, that is what really drew people in. So I knew Evan was going to kindergarten, I wanted him to be able to remotely monitor, monitor, monitor, no matter where he was, was, he was on the bus, in class moving around, so I knew, you know, even a really small laptop wouldn't cut, it just wouldn't be convenient for him. But if I could get a small cell phone, smartphone and do that, great. So I started in Android was really the only choice they make much easier to communicate with USB devices and other accessories. So I started working on that, beginning of May, in about a week or two into may, I had sort of unraveled how Dexcom was communicating with the device and, and what that communication looked like and how to interpret that, and then send it along to to a web service to a cloud service. So those tweets got people's attention. And I think I chimed in on on a bulletin board somewhere. And that's when Wayne Desborough reached out and said, Hey, I'd really like to do the same thing for my son, he's his room is too far for the receiver to be in our room and reach him. So we'd like to do to build a remote monitoring system.   Stacey Simms  16:36 Okay, so let me stop you there and tell me if this is all correct. Lane despereaux. Now with Bigfoot biomedical, yep. He has an engineering background as well, I think you work for Medtronic for a while, but he had designed his own home display system. He He's the guy who came up with the nightscout name, right. But he didn't connect it to the internet.   John Costik  16:56 Now, he, he did so ln really took my uploader and created that open source nightscout back end. So the the website you see today is is an evolution of his original design, and uses the same architecture. So a Mongo database, and a Node JS application sitting on a web server somewhere, and allowing people to view you know, their data or their loved ones data. Okay, so that that core was was Lane's work. And later, he brought on Ross nailer, software engineer, and they sort of refined that and got it to that point where, where it could could go live. So for my part, they, they took my uploader code, you know, I gave that to them. And I took their chart code, and put that into, into our home system. And that's sort of where it took off. So in the middle of the summer, I started using the Pebble watch, because I my whole goal this whole time was just how simple can I make this? How glanceable and easy can I make this for everybody involved, because I don't want to stare at the chart all day at work, I just want to know when something's up, I want to go on my day, but know that this system will tap me on the shoulder when it needs to. So Pebble watch was was a good way to do that. Because you can make it vibrate and do all sorts of things to get your attention.   Stacey Simms  18:25 Okay, so now you've got it on your Pebble watch laying despereaux and other people that you've mentioned, are coming up with their own additions. When did what we now recognize as nightscout? When did that all come into play? Was it a few weeks or months after you all kind of shared your codes?   John Costik  18:45 So I think lane started using that name fairly early on. And we all met Finally, actually, Lane was in Rochester, New York for a sailing competition that I believe he won at the end of August 2013. So he actually was at our house for Evans first diversity. And that was a great time when he and I got talking about, you know, everything, right? Very, just an amazing individual really inspired me and opened my eyes to like, Look, there's a lot of people trying to do this. And right now, between the two of us, we have all the components to make it happen. So it was very inspiring, because up until then, I mean, I was a software engineer at a supermarket. Right? Yeah, that wasn't something I'd considered. You know, I lived in a small town. I never really looked beyond that. I liked my simple life. And part of my response to Evans diabetes was I want my simple life back. So these were the tools I wanted to build that I needed to take it back. Right. Yeah. But now seeing this really large unmet need across the entire, you know, population of people with diabetes. He's in there and their loved ones woke me up to that. And then in November, I went to the data exchange, which is hosted by tide pool and diabetes mine. And then diabetes, mine has their Innovation Summit the same, you know, in that same couple days cycle. And that really sort of sealed the deal for me to see what type who was doing, starts trying to integrate all this data. And I'm like, wow, okay, this is really happening. So I can either join in, or, or not, right, and it just seemed like an obvious thing to, you know, pitch in and see what we could do. So, at that point, it was really just a matter of refining that code, to a certain point where other people could make it work. And personally, I didn't think it would ever grow beyond, you know, a sort of core really technically savvy group of people that could set up their web server set up the cloud service, right, and compile a Java application for their Android phone.   Stacey Simms  21:04 Well, that's what's what's remarkable about this whole movement is that, you know, as you say, this core of people, is making it all available to people who have no real technical knowledge, who are completely intimidated by the whole thing, but want access to this information to the point where they're willing to get in a Facebook group and say, Hey, can you help me? And then people do it, people help. And it's been really remarkable to see how it's grown and how people like you are not just sharing your code, but sharing time to set up all of these systems. When you look back now. I mean, can you imagine that? There's something like 14,000 people in the CGM in the cloud Facebook group. I know not everybody's using the system. But they're they're looking at this stuff. Did you think I would get this big?   John Costik  21:50 No, no, not Not a clue. I mean, Laura and I, we had some inkling that what we built was awesome. Because it really enabled Evan to have as close to like that standard school kindergarten experience, as we could have ever imagined after his diagnosis, right? Oh, he had to carry, you know, a little bag around, but he would have had to anyway, right, he'd always need his glucagon and glucose and finger checker. So it wasn't too much more of a burden to put a cell phone and and the the CGM monitor in their hand. Good. Yeah. So just enabled him and we worked with the school nurse, and we refined, you know, our web application and our care portal, to really be something that that she was comfortable using. And something you know, that that informed us, you know, in real time of what was going on in school. So it's really just a nice experience. And again, like, like the daycare experience we've had an amazing experience with, with the Lavanya School District, the nurse in particular, she's just a wonderful person just wants everyone to be happy and healthy, and every kid in that school, so she's, she's like Laura nine. Now. She just she knows his diabetes really well, because she can just glance at and she gets a really good sense for what's going on in his day and how he's feeling and how that will impact his blood sugar. And there's almost never an occasion where we have to chime in or even text her to say, Hey, can you give him a grammar to, you know, and if we do do that she's already on her way down, are already calling down to make it happen. So it's just it's just been an amazing thing for him and for us, and it's been wonderful.   Stacey Simms  23:34 How's he doing these days? He's in second grade now.   John Costik  23:37 Yeah, second, he's doing a good. So it's, it's nice with the share receiver, we can use the Bluetooth connection so that that Reagan's gotten smaller and simpler for you know, it's wireless now. So we really can get his, you know, physical burden of the devices to a minimum at this point. It's also improved outcomes tremendously is a one C is great, you know, his standard deviation is time and range, all these things improve by having this sort of, always on and easy access to, to all this diabetes data.   Stacey Simms  24:13 And you mentioned the Dexcom share, we should note that Dexcom share Medtronic has is coming out with a system that is similar, where instead of doing it yourself, they're setting it up for you. But that and I don't know if I'm explaining this correctly, but there are still features that you all have set up and that the nightscout folks have set up that are not included in the share, is that correct?   John Costik  24:36 The main missing feature that people really enjoy, is that what folks refer to as raw data. So the ability to see some data during either a restart or a warm up period, or during the dreaded triple question marks. You know, there's there's some visibility data, you're not totally blacked out from that data with nightscout. Whereas, as the standard Dexcom, system will do that.   Stacey Simms  25:11 Let me turn this around for just a moment and play devil's advocate. While many people, obviously 1000s of people use nightscout, and are excited about the Dexcom, share, there are a lot of people who have type 1 diabetes, I'm going to put teenagers in this category, probably a lot of them who feel as though this is a bit overbearing, and who feel as though there needs to come a time when you know, parents, or others, you know, maybe don't have access to their numbers, or that this creates a situation where there's just so much hovering. Now, it's difficult for me to ask you about that, because you're doing this for your family, you didn't do this for everybody else. What's your take on that? And even still pretty little, but what's your take on   John Costik  25:57 that? My take is always in law. And I've always said, you have to you have to find the systems and build your own system to an extent, you know, whether you're selecting devices, or features on those devices, that that suits you, in that time in that context of I have a teenager with diabetes, I have a young child with diabetes. So if you have a teenager that is very trustworthy, and manages their diabetes really well, you know, maybe you're, you're not going to look at that remote monitoring, it's an essential piece. Right. And for folks that may be worried more about their teenagers. I mean, at some point, you you, you do have to stand up and say like, Look, I'm I'm your parent, hovering or not, I want to keep you safe and alive. And I think there probably is a balance that you have to find with the individual child. Right? So if they feel it's really invasive. You How can we make the system less invasive, maybe they don't always have an always on access, but they get alerted to you know, impending hypoglycemia? Right. So there's always ways that since it's an open source system, people could take the system and, and really fine tune it to their particular needs. And for us, with epanet his age, it's less about hovering, and more about actually giving him more freedom. Because us, knowing what his blood sugar is allows him to just be a kid. Right? And it's, we don't he doesn't get bothered nearly as much as he would if we didn't have it. So so there is that sort of aspect that I think gets overlooked, you don't realize that it actually enables more freedom, in most cases?   Stacey Simms  27:45 I think that is a great point. Because it's a parenting question, right? It's not a technical question. The system exists, and it's great. And how you use it is up to you I've shared before I have never used nightscout. It's not something that I first when it first came out, I looked at that and said, we'll break that in about three seconds, if we can even get it set up. It's just not us. And when shear came out, I was one of the people who got the cradle and use it overnight, loved it and never really felt like I needed to get an upgrade because my son is at a point where he's at a terrific school. He's in fifth grade. And I did not feel that I needed to remote monitor because he's at an age. And listen, I can get criticized for this. Or I think it's better for him to make some mistakes, in what I know, after all these years is an incredibly safe and supportive environment. But I got the share receiver. And I use it, as you said, finding it gives him more freedom. There's a tradition in my town, where the fifth graders walk from school on Friday afternoons to our little town and are allowed for like two hours the town tolerates them running around, going to the soda shop, yes, we have a soda shop, going to the green going to the library on their own. And I didn't want him doing that, without at the very least a way to contact me. And we have both found that having the share system. And he only really takes a cell phone to school on Friday so I can see it. He doesn't even need to check in. I know what's going on. I'm not too worried about it. We text about well, what are you going to eat? And how are we going to deal with that. But it's made it so much easier. So as somebody who doesn't remote monitor on a regular basis, that little tool has given him freedom if he was two years old. I mean, my son's diagnosed before he was two, would I feel differently? Probably. But it's it is I think it's more a parenting question than a technical question. So maybe it wasn't fair to ask. You   John Costik  29:36 know, I think it's fine because ultimately I mean, I'm, I'm a parent, there's a lot of all this came out of what I felt were our needs as a family. Definitely one of our, you know, one of our family members safe and happy and to improve the quality of life at all. It does come down to how people you use the tool. It can be very invasive, if you're a parent that is constantly paying that kid to do so. Right So the technology can enable hovering as much as reduce it, I think,   Stacey Simms  30:06 yeah. And ask me again in middle school and ask me again in high school. So you know, these things changes as the kids change, right. And as the setup changes, hey, you also share your information. With some recent guests of mine, I talked to Dana and Scott from the open APS project that do it yourself pancreas system, and they're basically working on the you're operating an artificial pancreas system that Dana has worn for almost two years. Now they close the loop last year, what do you think is going to happen next? What do you look at in technology? And say, yeah, that's going to happen? And I'm going to have that forever? And   John Costik  30:42 that's a good question. So obviously, you know, I want us all to be put out of business, just cure it. Exactly. But if if, if there's a functional cure, whether it's bigfoots product, or Dr. damianos product, or somebody else, you know, whether it's encapsulated islet cells, you know, via site, if they figure it out, and are able to do an implant that reduces the insulin need, significantly, if not eliminated, those those are the sort of things that that make me excited, and I look forward to those and, and Scott, and Dana very clearly showed, like, Look, you need to get this AP stuff rolling, because it can be tremendously beneficial to people with diabetes, right? It reduces their burden makes them much healthier keeps their blood sugar's in range, with a much higher percentage, right? Yeah. So early on, they were I think it was Scott reached out to me saw a couple tweets, he tweeted back and said, hey, how can I get this? So he was one of the folks that I shared the uploader code with early, you know, before it was publicly available for it was open source. You know, I knew you looked into his background, and we talked and it was very clearly the software wise, he was savvy. And so I was happy to share that with with him. And Jason calibres was another person that I gave the uploader to earlier. And Jason Adams, who founded the Facebook group, was another one of these folks that early on, had really reached out to me and got me rolling.   Stacey Simms  32:15 Oh, let me interrupt you here. Why not? Why not? Make it more proprietary? I mean, why? Why make it so easily available? When, obviously, people were clamoring for this and probably would have paid you for it? I feel like I should be twirling my mustache. When I asked you that question.   John Costik  32:32 That was a question. We got a lot, actually. So when people saw our system, even before we made it open source, they said, Oh, that's a million dollar idea. I said, Yeah, but it's not really my idea. Right? Everybody's had this idea. Scott hanselman had the idea 15 years ago, you know, so people we've very smart people know that better, we can access our data, the healthier we're going to be. So this was just, I just happened to be in the right time and right place. And to be honest, I'm not particularly entrepreneurial. So I wasn't super motivated to go out and start my own company and raise funds to get this done and dig my heels in with regulatory issues. You know, it just, again, it was it was me trying to get our simple life back and starting a business around it was would have been a huge risk. And that's something that I was particularly interested in doing.   Stacey Simms  33:22 Are you happy with how it turned out?   John Costik  33:24 Yeah, yeah. I mean, if I had tried to commercialize it, how many people would be using it? Maybe not? Right, maybe it would have fizzled, and people would still perhaps be waiting for the G phi or the share. If if that group hadn't come up and sort of opened the FDA his eyes to that need. So yeah, I think it's, at this point, the best possible outcome I could have imagined and the appreciation from folks, and I don't deserve nearly any that I get, you know, it was a small part of the story. It just happened to be, you know, early on, but just that outpouring of gratitude, I mean, no one could have paid me enough to counter that.   Stacey Simms  34:05 And you are no longer doing software for Wegmans. Which is is that correctly, first of all, which is a fantastic supermarket up in upstate New York and across really the lot of the Northeast that people are familiar with, and I used to shop there all the time when I lived in New York, but you're not there anymore. What are you doing?   John Costik  34:22 So I've moved over to the University of Rochester Medical Center. So I was looking for something in health care, because I knew, you know, that's kind of where my heart was at this point was really to help find similar needs throughout health care. So I didn't want to just do type 1 diabetes work. I really wanted to dig in and see see what else we could do. Across the wide spectrum of, of conditions and, and whatnot. So there was a position open. At the University of Rochester Medical Center, a new group called the Center for Clinical innovation. I came in and got talking with, with the leaders of the group, this surgeon, Dr. Dave Minton. And then Chris de Silva. Were the primary folks in the group. And we kind of hit it off. And I showed him what I built for Evan. And they said, Hey, I think you'd be a perfect fit for our group. And the rest is sort of history. So I left Wegmans at the beginning of June and have been here and working on software that's very patient centric. And   Stacey Simms  35:35 I'm not just for diabetes,   John Costik  35:37 no, not just for diabetes. So the main piece of software that our group has written, will go out to all the clinics, or potentially all the clinics, they'd have to opt in to all the clinics at the University of Rochester Medical Center. So the entire health system, which is a big system, so we've built a tool that can aid all the clinics in gathering and interpreting patient reported outcome data. So that's, that's been a big push. And then I do have some projects that I can't announce yet, for those that are diabetes related, because they obviously know that that's always going to be a passion. So if I can work with the endocrinology groups here, to sort of advanced them along in their technology and how they use it at the clinical level, and how we can ease the movement of patient data to them. And while keeping the patient data, very patient centric, and give them ownership of that data is is sort of sort of a goal there. But there will be some, I'll have some announcements at some point.   Stacey Simms  36:39 That's great. Well, congratulations. It sounds like the perfect job. And it's wonderful for the rest of us who are waiting to see what you're working on.   John Costik  36:46 Yeah, no, it's it's been great. And it's a it's a dream job. I can't complain.   Stacey Simms  36:51 It's nice when those things can happen. Well, I'm curious, does your daughter she's just a couple years older than Evan, right? Does she want the technology if she asked me for a cell phone and that sort of thing.   John Costik  37:01 She does have a cell phone and Pebble watch. But we don't make her run. You know, our watch face on it. But it's for an in basically and we told her it said this is you know, since you have to sit with your brother on the bus anyway, if there were ever an issue where his blood sugar started dropping quickly, we we gave her a tube of glucose tabs and, and a cell phone so we can we can get ahold of her on the phone. You text her and say, Hey, give your brother half a glucose tab, which we've only ever had to do maybe once or twice.   Stacey Simms  37:31 But she said she still likes him probably because I have an older sister younger brother situation here in my house. And when they were under 10 she was super helpful. And now she's a teenager. It's like nothing to do diabetes. It's just your stinky younger brother.   John Kostic  37:43 Yeah, yeah, I could. It seemed that coming.   Stacey Simms  37:47 Still help him she'd always help him. But   John Costik  37:49 I think they're both I mean, I'm biased and all but they're both very sweet and compassionate. How old?   John Costik37:54 Are they?   John Costik37:56 Nine and so yeah,   Stacey Simms  37:57 of course. Yes, of course. Then they always will bait   John Costik38:01 breaking breakfast time where they can just they're just nice. Okay, yeah.   Stacey Simms  38:08 It's all good stuff. It's all good stuff done caustic. Thank you so much for joining me. I spent a lot of time in upstate New York and central New York. So it's fun to talk to you from the Rochester area, right?   John Costik 38:18 Yeah, you weren't circulator.   Stacey Simms  38:20 I was in Syracuse, Utica. My husband is from Utica.   John Costik  38:23 Yeah, my dad went to cert Su and   Stacey Simms  38:25 excellent. Me too. That's great. Well, thank you so much for joining me and I can't wait to see what you're working on. Next. Please let me know. And we'll get the word out.   John Costik38:32 All right. Thank you very much.   John Costik38:39 You're listening to Diabetes Connections   John Costik38:41 with Stacey Simms.   Stacey Simms  38:44 Quick behind the scenes story about this episode from back in the day. I remember when my editor and I think it was I don't remember it was John Bukenas. Sorry, john, as you're editing this, I don't remember if it was john. Or if I was still working with somebody else at that time. I listened back I proof. Listen, I call it to every episode kind of like proofreading your work. And I got it back. And I was so excited because as you know, I'm so excited by the DIY stuff, even though I don't understand half of it. And I couldn't wait to listen to it till I got home and I was at Benny's baseball game. And it was such a great mom. I'm like, No, I have to listen to this. So I'm listening. I'm walking around near the baseball field, kind of watching the game kind of on my phone. And this was at the time when we did not have share. But he did certainly did not have a cell phone. And we used to hang the Dexcom receiver by a clip on the dugout on the wire mesh of the dugout. We just just hang it there and like casually walk by occasionally or just really rely on the alarms to go off. I love baseball for diabetes. For a slow game. Somebody pauses so many times to treat. I mean, the only thing that's problematic is sliding. And you can kind of figure that out by putting the Dexcom or putting your pump site in different places. But I will never forget right by Davidson Elementary School in the ballroom builds over there walking around and listen to playback of that original episode back in 2015. Okay, well thank you to my editor john Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I will see you back here next Tuesday for our very next episode. Until then, be kind to yourself.   Benny 40:23 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

This month, Don Muchow became the first person to run from Disneyland in California all the way to Disney World in Florida. It's a pretty amazing story when you consider that when Don was diagnosed with type 1 back in 1972 they told him that exercise was too dangerous. He wasn't even allowed to take part in his school's gym class! Don shares how he made the turn to ultramarathons and beyond and what led him to make this incredible coast to coast journey. He had to contend with COVID delays along the way and got a terrific surprise when he arrived in Orlando. Plus.. what's next? He's already thinking about another incredible goal. Learn more about Don here In our Innovations segment, a seven day pump inset? And some of our favorites have a little fun with a donut demonstration. Stacey mentioned a new link for Dexcom and Medicare this week. Find that here.  This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription below     Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:22 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:27 This week Don Muchow just finished an incredible run from California's Disneyland all the way across the country to Disney World in Florida. diagnosed with type one as a child, Don wasn’t an athlete in his early 40s. He decided to try working out but then he got some bad news. His eyes were in trouble.   Don Muchow  0:47 It was like a punch in the gut to get that laser retinopathy treatment after I had made the decision to be healthy. And I made myself a promise that if I could just have a do over, I will do it over and I just kind of not looked back since then.   Stacey Simms  1:06 He’s definitely not done. He’s 59 and he has yet another big goal. I'm so excited to share his story in our innovations segment, a seven day pump inset and some of our favorites. have a little fun with a doughnut demonstration. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. You know we aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new welcome. My son was diagnosed with type one back in 2006. Right before he turned to my husband lives with type two diabetes. I don't have any type of diabetes. I spent my career in broadcasting and that is how you get the podcast. My guest this week. Oh my goodness is Don Muchow. He made national news last week when he finished a coast-to-coast run. He calls himself a type one diabetic extreme ultra runner and Iron Man boy is he ever I wanted to read you a couple of highlights from Don's website. So here's what he did before the accomplishment we're going to talk about today in 2019, who ran across Texas he holds the fastest known time record for doing that. 2018 he completed relay Iowa which is 339 miles in 2018. Sioux City to Dubuque first ever solo finisher of the longest us relay first ever T one D finisher 2017 capital to coast race 223 miles, Austin, Texas to the Gulf of Mexico first ever to Indy solo finisher, and on and on and on, I will link up Dan's website over at Diabetes connections.com and in the show notes, and do yourself a favor because that wasn't even a quarter of the list of stuff that he has accomplished. And as you heard, he was not always an athlete. His story is even more amazing. When you find out that when Don was diagnosed in 1972, he was told no exercise too dangerous with type one, not even gym class, he was not allowed to take gym class, I will let Don tell you how he overcame that type of thinking to become the incredible athlete that he is now and he has great advice for those of us who want to be more active but are not ever going to run across Texas, let alone across the country. And that is coming up in just a moment. But first Diabetes Connections is brought to you by Dario. Bottom line you need a plan of action with diabetes we have been very lucky that Benny’s endo has helped us with that, and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of A1C within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my Dario.com forward slash Diabetes Connections for more proven results and for information about the plan. Don, thank you so much for making some time with me. I really appreciate you coming on.   Don Muchow  4:26 Thank you very much. I'm happy to be here.   Stacey Simms  4:28 How are you feeling this morning?   Don Muchow  4:29 Oh, hungry and tired. Oh   Stacey Simms  4:33 my goodness. You know, I'm not sure where to begin because there's so much to your story. But I guess let's start with my biggest question. And I always have this for people who are ultra athletes and do these incredible incredible feats. Can you tell us why you would do something like this? When did the idea enter your brain that this was a thing you wanted to do?   Don Muchow  4:55 We started thinking about the run about three years ago. And our primary objective was to get the word out to other type ones who are living with the disease. That while exercise can be justifiably scary, because low blood sugars can lead to seizures, and consciousness, even death, the long term complications from avoiding it entirely as I had done for the first 30 or so years, since my diagnosis are really pretty awful, I wouldn't compare it to the remote possibility of a trip to the ER for incredibly low blood sugar. And it's a snake in the room that you have to face. You can't ignore it, and you can't freak out about it.   Stacey Simms  5:42 You said we and our there what Tell me about your team. Before we go any further.   Don Muchow  5:47 I often tell people somewhat jokingly that I just do the running. And my wife and crew chief Leslie does everything else. That's actually pretty close to true. I started calling her mission control. Once we got started, we got closer to the Space Coast.   Stacey Simms  6:01 That's great with a run like this. And well, I want to talk about, you know, other feats that you have done. And you already mentioned, you went so long without regular exercise. There's so much to this story with this run. What did you think because you started this mean, COVID really threw you for a loop, we'll get into that. But when you were starting out what was the plan,   Don Muchow  6:22 we had spent probably about a year getting the route laid out so that it was safe enough to do, we were conscious of the fact that some people might want to do that same route again. And the last thing we wanted was for someone to die trying. When we started thinking about sort of putting feet on the ground, we went out and scouted the route in the car and made sure that I was comfortable with a train and with the route that I would be running. And we still run into obstacles, but it sort of helped us get our mind around the idea of what it would be like to run across the country. Wow.   Stacey Simms  6:58 What kind of things do you look for when you're scouting it out? Is it roads? Is it towns to be able to drive on?   Don Muchow  7:05 You're right on all three of those. We wanted a route that I could run that the van could drive as well. Wouldn't be much use, especially with type one, if I ran 100 miles of trail in Arizona, and there's no way to find. So we wanted a route with wide shoulders, relatively low traffic that the van to drive most of when we were in metropolitan areas that had bike trails. That was the one exception where we just kind of let me run on the trails because they had always pop out to CBS or gas station or something like that.   Stacey Simms  7:39 And why Disney to Disney was that geographic? Are you a fan?   Don Muchow  7:43 I am a fan. My wife and I are both big fans. Disney has been credited for saying something about how If you can dream it, you can do it. And that seemed like a sort of an anthemic statement, but really the the actual route from Disney to Disney was a bit of a happy accident. We originally planned to run from basically from LA to the Space Coast. And a friend of mine said, Oh, well, so you're running from Disneyland or Disney World. And I you know, I didn't have that idea. But that is brilliant. We decided to switch it up just a little bit to do the Disney Disney piece inside the transcontinental run.   Stacey Simms  8:18 Very cool. Oh, that's great. So you started out I remember when you put your feet on the ground and got going. And at that time COVID was not really a thought. When did you realize that you were going to have to make some changes   Don Muchow  8:31 that occurred to me in I think it was about end of the second week of March of 2020. When we were making a restock stop, and big spring, Texas, and we stopped at Costco and they were out of water and out of practically everything else we needed. And we began to get Inklings that it was going to be impossible to resupply the van and we were looking at lockdowns in my hometown. And we thought about, okay, well can we make it to Dallas. And if we did, you know, there will be facing an empty refrigerator. So we decided to kind of be planful about how we were going to sort of pause things and pick it up when it got safer to do so. We had to pause on March 22 or 24th. I don't remember exactly what we picked up again on September 24. ran for about a month and had to pause again because the numbers east of Texarkana were looking bad. And then we finally resumed the last third of the run and on March 2 of 2021 and made it to the coast.   Stacey Simms  9:40 Wow. And pardon my ignorance here when you're marking an event like this or a feat like this. Is it days, hours just miles done? Are there differences in how you market and how if somebody's officially marking it   Don Muchow  9:52 mentally I'd look forward to the next big town. Whatever comes actually the next town of any sort. You Usually what that means is, you know, gas stations, lodging, that sort of thing. And when you're out there in the middle of nowhere, that takes on a special significance. In terms of documenting the run, we originally set out to document it more thoroughly when we thought that there would be records that we might bump up against. When we found out that on this particular route that no one had actually done Disney the Disney before we relaxed a little bit, but still kept marking our progress, we have a live GPS tracker that kept track of where I was, every moment, I have two GPS watches that have my workouts recorded. And we also have the recommendation of an organization called fastest known time, timestamp selfies next to unique landmarks. So in terms of marking our progress, very, very hard to cheat on a route like that if you have to be at a certain place at a certain time, and the only way you can get there is to run. So we documented our progress. using those tools. I   Stacey Simms  11:03 guess what I also meant was in terms of the time break that you had to take because of COVID do you count just the time running then for your you know, the way you clocked it,   Don Muchow  11:13 we did taught up the time total time we spent running believe between the two Disney's It was 88 days, and it was 90 coast to coast records organizations, especially fastest known time, care about the entire time it took you especially if there's no starting gun, that's typically where people like fastest, sometimes calm pick up. It's elapsed time. So if you're visiting the bathroom, you're still on the clock. If your technique picking the lunch break, you're on the clock, we realize that while this might be the fastest known time from Disney to Disney, since it's the first, it'll be a record that's easy to break for anyone that serious about it. It really will only take them about three months to do it at my pace, and many people are faster than I am. So we take comfort in the fact that we drew some attention to type one and exercise. And that this was a bit of a bit of a media event because it was the first Yeah, definitely helped us get the word out.   Stacey Simms  12:10 And I don't mean to take anything away from it. I'm just trying to figure out so do you have to count it on February to April? Or do you just count the time running? I guess would you have to count the COVID break?   Right back to Don answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen  and our endo always told us if you use insulin, you need to have emergency glucagon on hand as well. Full blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice very very low blood sugar can be very frightening. Which is why I'm glad there's a different option for emergency glucagon it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to use with no visible needle. You pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit g vo glucagon comm slash risk. Now back to Don. And he's talking about how the timing of this amazing run is recorded.   Don Muchow  13:21 Personally, I count the whole time. It is what it is.   Stacey Simms  13:24 I have a few more questions about the run itself. But I want to go back and talk to you about you mentioned the 30 years you spent not really exercising, it's hard to believe but when you were diagnosed, you were told it was too dangerous. Is that really a factor said tell us about that.   Don Muchow  13:41 I was diagnosed in 1972. And people who are considerably younger than me may not realize that glucose meters weren't invented or weren't publicly available until the early 1980s. My first glucometer was this massive brick shaped thing that I got, I think it was either 1982 1983 prior to that, really the only way of telling what your blood sugar was not what it is. But what it was, was with a urine test and all that really told you as past history. It was justifiable given the circumstances, that if there was no way other than a trip to a hospital to have a glucose test done, that if you couldn't tell how low your blood sugar was, and you were feeling awful and faint, and you know, on the verge of passing out that maybe it wasn't so good to do things that cause a drop in blood sugar problem was that, you know, after 30 years, glucose meters had been around for a while at that point. And I didn't change the advice I was following. So that's on me. But I think a lot of people even with glucose meters are justifiably scared that if they can't stay on top of a severe drop in their blood sugar that maybe this is not for me to do. We face challenges during these long runs. And because I'm type one, like a lot of you out there, you know I gotta face the same challenges and Many of them aren't easy, but I just keep thinking about the turn, I almost took down the road to being visually impaired and having circulatory problems. And I'm just so glad that I went ahead and face those risks. Wow.   Stacey Simms  15:15 Do you remember what it was that made you think I've got to move forward with exercise? I've got to change this. Yes, please, please tell me what you answer that the first thing you did wasn't a marathon.   Don Muchow  15:27 Not a marathon. It was in 2004. I had gone to see my retina specialist who had been monitoring proliferative retinopathy and my left eye. And it had come to the point where he recommended a laser retinopathy treatment, I think those are deprecated. These days, I think they use an anti inflammatory injection now. But back then the recommended treatment was laser treatment of the blood vessels in the eye that were leaking. And it left me with a blind spot. And I asked my retina specialist at the time, well, what does the future look like for me? And he basically said, Well, I'll have more blind spots if you don't do anything. And I had already made a decision that year, that after finding out was short of breath going up the stairs, that I wanted to be healthy, signed up for 5k turkey trot, and it was like a punch in the gut. To get that laser retinopathy treatment. After I had made the decision to be healthy. I made myself a promise that if I could just have a do over, I will do it over. And I'm just kind of not looked back since then. I actually have a little bit of a concern that for many years that once I got to the point where I finished a run across the US that I would turn around and go Okay, now watch, and and not run anymore. But I've taken up swimming. So hopefully that'll help.   Stacey Simms  16:51 And I'm trying to do the quick math, you're done. But how old? Were you in 2004?   Don Muchow  16:55 I think I was in my early 40s. I don't know the exact age, I think it was 42. But I'm not sure about that.   Stacey Simms  17:02 I only asked because you didn't change your mind when you were 22. Right, you didn't start exercising at a super young age. I think 42 is still very young. But it's not, you know, you're not a kid, if you're making decisions a little bit later in life. And the results are phenomenal. I mean, I just can't believe that,   Don Muchow  17:18 I actually think it was something of an advantage to start once I had a gray beard because I have lower expectations of myself. And I think as you push the distance, it's good to remember that not everything in life is achieved by going all out. I progressed slowly to longer and longer distances, probably around 2011, I had gotten used to running marathons and I realized that wasn't getting any faster. There was an ultra, I think it was a 50k in Fort Worth that came up on the radar. And I thought to myself, well, that's only five miles longer than a marathon. Let's try it. I did find it. There were only 400 people in that race that signed up. I think it was like 25,000 or something and signed up for the marathon, but only 400 for the ultra. And it was kind of a nice feeling to realize that, you know, the bulk of the work was behind me. And really now it was just seeing how far I could go. And I began to realize that, you know, if I sort of run my own pace, which is relatively slow, that pushing the distance was a more interesting challenge to me than trying to run faster and risk injury.   Stacey Simms  18:27 By the way, as a mom, I have to say, is that a Dexcom? Beep You good? We need to take care of any.   Don Muchow  18:33 We're good. I have lunch just a little while ago. So it's probably complaining about that.   Stacey Simms  18:39 I'm sorry to be if that's a rude thing to say.   Unknown Speaker  18:41 No, no, no, no, it's we're all tribe.   Stacey Simms  18:45 Thank you. So let's talk. I have some questions from my listeners. But let me ask you a couple more Disney questions. There's this great video of you finishing at Disney World. What was that like? And did you know that they knew you were coming and we're going to be celebrating like that?   Don Muchow  19:00 I knew absolutely nothing about it. We actually were talking just before at our last aid stop before we ran up to the Magic Kingdom about what would happen when we got there. We had thought okay, well, you know, we don't want to serve the Disney guys, we, you know, we realized that's private property, not officially part of the run because we had made a rule for ourselves that we would not run on private property. And when we got to the contemporary zero security guard said, Oh, are you the runner? And my first thought was, oh, guy, we're gonna get escorted off the property and they knew we were coming. And I said, Yeah, I'm the runner. And he said, Okay, well, hang tight. We got some friends waiting for you at the gate, ran over to the gate. And there were probably two or 300 Disney cast members waiting, all cheering. There were people lining the run up to the gate. And when we got there, most of aliquot the president of Walt Disney World presented me with a custom Mickey Mouse cat that said Disneyland The Disney World and escorted me into the park and said, have fun, do what you want to do, we'll pay for it. Wow. And I had an ice cream cone. And I wrote, it's a small world. And I had 50 more miles to go. So I went back and finish running. But it was the most magical time in the world. I just can't thank those guys enough. That was this awesome surprise party.   Stacey Simms  20:20 Do you know who told them? I mean, we   Don Muchow  20:22 all knew your guy, some sneaky person, I don't know. Actually, I actually have many, many months ago at contacted Disney media relations to see if anyone had run from Disneyland Disney World. And then they kind of went radio silent for a while. I suspect that what happened was that they waited for a while to see if it looked like it was going to finish. And then when it looked like it was actually going to happen. They're like, Okay, this is something noteworthy, and let's be there, and let's make his dreams come true. It was amazing. Finish the second finish line on the coast and Indialantic was almost as awesome because I really mostly expected my bio dad and his wife to be there, my brother and his wife. And you know, we'd all take some selfies and celebrate the fact that we got there. And there was a bit of a crowd and make the deputy mayor of Indialantic was there and had swag and other things. If somebody brought me a Red Bull. And I needed that. So it was it was pretty awesome. To have the two finish lines was kind of a bonus.   Stacey Simms  21:26 And just to be clear, when you said after Disney World you had 15 miles to go. Is that the same day that you did this? Yes,   Don Muchow  21:33 yes. The same day. Our plan was to stop in Kissimmee. Right at the turn to 192, which has toward the coast. I think we finished that day at 31 miles. You know, originally, when we didn't think there was going to be much of a fuss at Disney, we were hoping to do more like 3436, something like that. But we actually got in about 50k that day, and I was pretty happy about that.   Stacey Simms  21:57 The next question from my facebook group is about how did you manage blood sugar along the way, I know there must have been lots of ups and downs and things like that. But can you give any advice especially for the athletes who are listening in just on you know how you manage such a, an endurance feat?   Don Muchow  22:15 A couple of things. One is that it's important to be aware that while cardio can make you insulin sensitive, pushing it to the point where stress becomes a factor, the stress hormones can actually reverse that effect a little bit and make you a little more insulin resistant. I like to tell people that that's your body pumping you full of hormones and energy so you can run away from the cheetah. So that's an effect to be aware of my wife, Leslie, who managed all the food, made sure I got enough calories every day did a good job of watching my sugars on Dexcom follow. So generally speaking, when I got to the van, she knew what kind of fuel I needed and had it ready. In terms of using the settings on my T slim Tandem pump, I had to run it in sleep mode most of the time, because I was fairly insulin sensitive during the day and unless blisters or heat were bothering me, the biggest challenge was keeping my sugar up. I found that even in exercise mode, it was those teeny little too much. So I would say if you're going to run 100 milers, 200 miles, that sort of thing. Think about sleep mode, and not just exercise mode. That was something we had to do.   Stacey Simms  23:32 The same person wants to know how many pairs of shoes you went through.   Don Muchow  23:37 If you count just the ones that I wore out, it would be seven, I had a custom pair of shoes equipped with velcro all the way around the top and sand Gators. Same with the ones I use in the Mojave that I put put on for the beach. So that would be the eighth pair. So eight pairs of shoes, including the ones for the beach.   Stacey Simms  23:59 Oh my gosh. And if you could briefly and I will I will get you out of 1030 I promise. Just a couple more quick No worries, we   Don Muchow  24:06 can run a minute or two. Okay. Okay, NOT HAVE NOT HAVE NOT a half hour   Stacey Simms  24:09 Oh, no, no, no, no. Um, another question here is what did your training schedule look like? How do you train for something like this,   Don Muchow  24:17 um, I have a hilly 50k route that I typically do training runs on. I borrowed it from some cycling friends of mine who wanted a route with a lot of hills in it. And I typically try to go out and run that in every kind of weather that I could. During training, I would take I would take the rest day in between training days, but every once in a while I would run three or four days in a row, you know, do the same 50k route. Generally speaking, I didn't train above a 50k distance because I didn't expect to do more than 35 miles a day on the transcon I'm for Texas. We train a little bit longer per day. And for Iowa, we were training like 15 miles a day. But there's just no way for me that I could keep that kind of keep up a distance beyond 35 miles a day for 100 days.   Stacey Simms  25:15 When you're doing something like this, do you try to eat the same stuff all the time? Do you? Are you able to bury things? How does that work for you,   Don Muchow  25:23 um, I tend to gravitate towards some things that I liked. We also paid a lot of attention to trying to get things into me that had protein so that my muscles could rebuild a little bit better overnight. So we ate a lot of hummus, a lot of yogurt, chicken salad, that sort of thing. I got to a point where I didn't want hummus. Yeah, we ran out. We ran out, we ran out a chicken salad before I hated it.   Unknown Speaker  25:54 Yogurt   Don Muchow  25:57 with I'll see hydrated attempted to taste kind of pasty to me. But we would start putting those little mandarin orange cups that you can get at the grocery store, we would put those into yogurt to make it a little a little wetter. And it was a great fuel source. I mean, it's protein, fat, a little bit of sugar. So we I had a lot of that. If I needed carbs, we you know we'd throw in a Oreo or another butter or something like that. But we really paid attention to trying to get the calories and to me. I went through about probably 4000 5000 calories a day. Wow, if any less than that I was losing weight.   Stacey Simms  26:39 Did you did you have to treat lows along the way a lot of them or were you able to kind of manage by what you're eating. And with the sleep mode, as you said,   Don Muchow  26:49 I'm most mostly we managed by eating in sleep mode. We didn't run into a lot of lows on this run. And by that I don't mean to suggest that we had a lot of highs. On the days that were upwards of 35 miles. I tended to have more persistent highs until I went to sleep. And then of course my sugar's dropped very rapidly at that point, we had had previously had a run in with a severe low back in 2019. When I ran across Texas, there was a section between Kermit and Odessa that was very stressful to me. And my sugars had run high the whole day as a 41 mile stretch. And I basically kind of burned up my glycogen was under fueling because my sugar was running high from stress. And then that night when I went to sleep, my sugar dropped to 20. And for anyone here who's not from the US, that's probably one millimolar something very close to that, and, and was wavering in and out of consciousness. And my wife had a glucagon rescue kit that she used on me and I God knows how many carbs for my sugar, what came up. We learned to be careful about that and pay a lot of attention to whether the highs were due to over fueling or stress. And if it was stress, we treated that very differently than we did. You know, overeating. Stress, we typically found that dosing Just a little. And actually taking on food even though my sugar was high, was the best way to get my body to sort of calm down. Otherwise, I would just run high until I fell asleep and then I dropped like a rock.   Stacey Simms  28:38 I'm laughing with this question, because we debated in the group. But this question came up. Ask him what he's going to do next. I do have another?   Don Muchow  28:50 That's a good question. Um, I have been, I've had my eye on solo swim around keywest. That's not as amazing as it sounds from a type one perspective. My good friend Karen Lewin was actually the second type one to solo swim around keywest. I don't remember the name of the first one. So but I would be joining a club of people I'd be very happy to be a member of that's a 12 and a half mile swim. During the COVID pause, I switched to swim training because I needed to do something to break up the run training a little bit it was getting monotonous without knowing when I started again. Yeah. So I've got that swimming on my mind to do after this. But at the same time, I think I need to take some time off, recover. Just relax and sort of let my body sort of recalibrate to what normal life is like.   Stacey Simms  29:46 And I have to ask you mentioned they said Disney World. Come on in and do whatever you want. It's on us. He had an ice cream cone and you did small world, small world on why   Don Muchow  29:59 I have some real Very pleasant memories, from my childhood of riding that ride. It's always been there. And it's quiet. And one of the things that I found on the out on the run was that I would get something a friend of mine called it sympathetic nervous system overload, basically being two or three feet from traffic. for hours on end, I got to the point where I was kind of jumping at loud noises. So we really loved It's a small world. And that was one of the reasons we chose that. And it was our favorite ride anyway, so   Stacey Simms  30:38 I love it. Hey, before I let you go, any advice for people listening who are you know, they're running five K's or they're maybe just starting exercise with type one. And, you know, not planning to do what you've done. But a little nervous, but a little excited about exercise. You know, what do you tell people like that.   Don Muchow  30:59 Um, if you have a bad day, it's just a bad day. Don't kick yourself for mistakes. Don't kick yourself for things that don't go the way you expect, um, look at it as a chance to learn something. Even bad blood sugar Day is a chance to alter your plans, change something in the way that you manage your sugars during exercise. But above all, don't give up. I said   Stacey Simms  31:23 that was my last question. But something else just occurred to me, Don, have you ever gone back to the doctor, or anybody from kind of your previous life?   Don Muchow  31:32 I have. And things have been stable so far, we're going to kind of thoroughly check things out to make sure nothing's changed after the run. But we'll see how it goes.   Stacey Simms  31:42 Yeah, but they've got to be so excited to see what you've done.   Don Muchow  31:46 My endocrinologist is pretty excited. I'm hoping to see him here in about a month or so. And we'll check in with each other and see what we can tell from the numbers. Well, Don, thank   Stacey Simms  31:59 you so much for spending so much time with me. I really appreciate you coming on. Congratulations. And I got to tell you, I think what you should do next is is rest stop and put your feet up for a little while. But I know that's not going to happen. But thanks for being here.   Don Muchow  32:11 That sounds like a great idea. I'm happy to be here. And thank you so much for your time.   Unknown Speaker  32:20 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  32:26 More information about Don in the show notes or Diabetes connections.com linked up to all of his amazing accomplishments. I'm still a little speechless. What a thing to do just to think of doing these incredible goals and getting them done. I know that people like Don will say, well, it's just a matter of training, and then you put one foot in front of the other. But my goodness, it's pretty amazing stuff. Innovations coming up in just a moment. We're gonna talk about what looks like a pretty big move from Medtronic in terms of longer where pump in sets. But first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. You know, why not? It's not as though you stopped needing a CGM, the minute you turn 65. The good news is that the Dexcom G6 continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have either type one or type two diabetes, and intensively managed insulin, you may be covered. To find out more about what that means. And if you qualify, check out dexcom.com backslash g six dash Medicare, you're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money. Learn more again that link I'll put this in the show notes too. It's dexcom.com backslash g six dash Medicare.   Innovations this week, one medical story and one donut story. Let's do the medical one first, interesting news from Medtronic, they have launched a new line of what's been called insulin infusion hardware. They've launched this in Europe, that basically doubles the time you can wear it so you know, if you were an insulin pump, you know, as you listen, you have the inset on your body. It's the way a tube pump will connect to the Omni pod has this too. It's just a little different cuz it's kind of hidden in the mechanism. But they all have this way that you insert a needle the needle comes out and the catalyst is under the skin with the adhesive and the connector part above the skin. I used to describe it looking like a tiny nicotine patch with a bump on it. They last about three days. You're supposed to change them every two to three days to avoid infection and scarring and clogging and that stuff, but Medtronic says that they have one that will last seven days. And we talked about this when I spoke to Medtronic Sean Salmon back in oh I want to say October of last year was the fall of last year. He mentioned this. He said that the tubing set is what he called it would go from two to three days to seven days. And he said the way they were doing that I'll link up the episodes you can listen again, is that it has to do with the way that they filter insulin. Through the inset. He says that the preservatives in insulin are what causes the site reactions and the clogging and that kind of thing. And they found a way, you know, obviously, it's proprietary didn't go into too much detail. But they found a way to work around that. This is really interesting. I'm surprised this didn't make a bigger splash. This is a huge deal. If it works as well as we would hope to be able to where your pump on your body for longer without scarring or issues or that kind of thing. So European friends, if you're using it, you hear about it, talk to your endo about it, let us know how it goes. And we will wait for more information on the Medtronic seven day inset. And the other story I wanted to bring you in innovations is the I don't know if it's a medical innovation, but it sure could be helpful that fabulous people at TCOYD take control of your diabetes released a video that many of you sent to me and it was just fantastic. I wanted to share it, it is how to eat three donuts and stay in range. And this is Dr. Jeremy Pettis, Dr. Steve Edelman, and they basically have a demonstration. But it's really a kind of comparison of how they would each do it. And they show you they eat three donuts they take you through, they're using a Dexcom to kind of show the results. It is a Afrezza the inhaled insulin, kind of versus timing of traditional insulin, I won't spoil the whole thing. It's fun to watch, I think they do an incredible job as always, of breaking down kind of complex thoughts and making them user friendly, I'll call it and they have such a great sense of humor, I really, really enjoy their stuff. So if you haven't ever watched any TCOYD videos, they have a ton of them. And their conferences are always a really good time too. So I will link that up in the show notes. But I would imagine you could Google how to eat three donuts and stay in range. Probably it'll pop up pretty easily. Before I let you go, we did have our quarterly endocrinology visit. I always thought about putting it off because there's really nothing going on. Right now we're kind of in a groove or just re entering some parts of life. Knock on wood is you're listening this my whole family is vaccinated. Benny is two weeks past his I think I'll be past two weeks past my last one when this episode goes live. Yeah, it will be. And Benny has really re entered more of the real world very recently, as I've mentioned before he got a job. He's back with the wrestling team. He's not yet going to school. He's staying virtual, but he's back on the high school team. And you know, we've had some blood sugar issues as you would expect whenever you're going back to a sport after a long time not but he's managing them really well. So that I only share the endo appointment because he of course, we've known this guy for 14 plus years. He's taking his family to Disney World for the first time. And that's later this year. And that's what we spent mostly we've been talking about.   You know, my tips and tricks for Disney World, we'd have that episode last week, but his kids don't have type one. So it wasn't that relevant anything to have to listen to the podcast episode. And I realized I haven't been to Disney, you know, since COVID. Certainly. And I know that there have been some changes. So I'm fascinated to see that apparently, Fastpass plus has been eliminated during COVID, which was like my lifeblood when I go there, you know, I get this well in advance, listen to how excited I'm sounding just talking about it. But I get him in advance and we refresh 600 times a day and get all the rights we want. I mean, it's really, there's a science to it a little bit of madness to it, too. But it sounds like I'm gonna have to relearn everything. Because it sounds like they're gonna make a lot of changes when they you know, they really start opening up more, although disney world has been open really for months and months and months. But you know, when they start letting the bigger crowds back in, so that was fun. I love our endo. I feel really fortunate that we have the relationship with Him that we do. And the visits are now me kind of sitting in the corner. You know, me I stay, I can't stay quiet. But I do very little. It's really just a conversation between him and Benny and I feel really fortunate about that. Alright, classic episode coming up later this week. As always, thank you to my editor, John Bukenas, from audio editing solutions. Thank you very much for listening. Hey, do me a favor, share the show. If you enjoy it. You think this is good information. If it's valuable or helpful to you in any way. Please tell somebody else in the diabetes community about it. Word of mouth is the best way to spread the word about podcasts and I really appreciate that. All right, I'll see you back here in a couple of days. Until then, be kind to yourself.   Benny  39:35 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.  

Let's talk about summer camp! Specifically non-diabetes sleepaway camp. We have a great roundtable to tackle a subject that can seem pretty scary but Stacey thinks is one of the best things she's ever done for her son. Joining Stacey are  Shelby Hughes who live with type 1 and has sent her daughter with T1D to diabetes camp and regular camp, and April Blackwell, an adult with type 1. April went to Space Camp as a kid - no surprise if you remember our previous episode with her. April works in Mission Control at NASA. Previous episode on camp here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription (beta) Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom help make knowledge your superpower with the Dexcom G6 CGM system.   Announcer  0:23 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:29 This week, let's talk about summer camp specifically non diabetes. sleepaway camp, we have a great round table to tackle a subject that can seem pretty scary, but it's honestly one of the best things I've ever done for my son. And my guests who went themselves agree.   April Blackwell  0:46 It sort of put that independence on me to you know, take care and manage my diabetes on my own. And I think that was a big step for me personally, just because I wanted to be like everyone else and have sleep overs and go to camp and stuff. So it was a big motivator for me.   Stacey Simms  1:02 That is April Blackwell, an adult who lives with type one talking about her summer camp experience. You'll also hear from Shelby Hughes. She lives with type one and sent her daughter with T1D to diabetes camp and regular camp. Plus, you'll hear from me, I've sent Benny to month long, regular sleepaway camp for many years. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I am always excited to have you here. But I this is one of my favorite topics. I love talking about camp. I think camp is so important for kids and for parents. If you're a longtime listener, you know that if you're new, Hi, I'm your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. So what's the big deal about camp, I really feel that going away from your parents, even if it's just for a couple of nights. And usually it's for at least a week, that's what we're going to focus on here is week long or longer camp programs, gives kids a gift, a gift of independence of confidence, a little bit of responsibility, diabetes or not. You learn who you are, when you're not with your home friends, your school friends and your family. You can try different things you can you know, invent different personalities, you can give yourself a nickname, I went to camp with a kid who had a completely different name at camp. And it's a huge tradition in my family, I went to the same summer camp for a little while as my dad, if that gives you any indication, my kids didn't go there. Because we we moved that was a northeast thing. And my kids are both gone to camp, of course in the southeast where we live. But I'm such a proponent of camp. And the flip side of that is, it's so great for the parents, because you have to know who you are when your kids aren't around. I know that seems weird, especially for diabetes moms and some dads. But we get so caught up in our kids, that when you are able to turn the Dexcom share off for a week or longer. It's liberating in a way that I think is incredibly valuable. Is it scary? Oh yeah, I worry every day, especially when he's not at diabetes camp. So we'll get to it. I do want to bring up a couple of quick points. Before we get started. I'm going to try to get a blog post out about this this week. Sometime. I'm a little behind on things. But I'm hoping to put that out because we cover a lot of issues in this Roundtable. But one thing we didn't really mention is the question of when is my kid ready to go to regular camp. This varies kid to kid various camp to camp. I think that if your child is able to check his or her own blood sugar, you know, with a meter not just looking at a CGM, because cgms can fail. And they do need to know how to check their blood sugar. If your child can administer insulin with his or her pump, if your child can change a pump, inset, and do all these things with supervision, I don't expect you know, eight 9, 10 year olds, 11 12, 13 year olds even depending on the kid to be able to do all these things perfectly. If they can do all that with some supervision, then I think you're at a good starting point. And the other question is of the camp itself. Are they willing to learn? Do you feel comfortable with the staff their medical or not, and their knowledge? You know, if you're sending a 14 year old to scout camp, you might feel comfortable that the scout leader knows how to administer glucagon and could call 911. If you're sending an eight year old, you may want to have a camp with more medical knowledge so they can recognize highs and lows and help with giving shots if needed. You know, that kind of thing. It all depends on many, many different factors. But these are important questions to ask yourself. We're going to go through with a round table I'm going to come back after with a couple of things that I think we missed that I want to make sure to mention. But first Diabetes Connections is brought to you by Gvoke Hypopen and you know that low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out. There are a lot of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen is the first auto injector to treat very low blood sugar. Gvoke Hypopen  is pre mixed and ready to go with no visible needle. Before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand. Find out more go to Diabetes connections.com and click on the Gvoke logo. g evoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk.   My guests this week love camp just as much as I do. Shelby Hughes lives with type one herself. Her daughter Caroline was diagnosed at age seven. She is now 11. She's the youngest of Shelby's three children. And Caroline went to diabetes camp and a regular camp and you will hear all about that. April Blackwell joins me as well. She lives with type 1 diabetes. She was diagnosed as a kid and she went to space camp and was then a counselor at Space Camp. Now you probably recognize April's name. We've talked to her before. And, gosh, I'm always all starstruck talking to her. She works at NASA. She has her dream job she says of flying the International Space Station for mission control. So she was kind enough, right that she was kind enough to come on and talk to me about camp this week, which was just absolutely amazing. So April, thank you so much for that. But I think her perspective is really valuable. And I hope you enjoy this whole conversation. So I am really pleased to welcome Shelby Hughes and April plaque. Well, we are going to talk about camp. Ladies, thank you so much for being here.   Shelby Huges  6:51 Thank you for having us.   Stacey Simms  6:53 I think we are all in agreement here that camp is cool camp is, great campus really good for kids. And for parents. So she'll be telling me about your, you know, when you decided to send your child to camp, how old she was, what kind of Camp it was, how long.   Shelby Hughes  7:08 So the first year that Caroline went to camp was before she was diagnosed diabetes. And I know it seems early, but the camp where my older two children had gone was you know, not a lengthy stay camp is about five nights, six days, and it was a church camp. But it was within, you know, reasonable driving distance from our house. And they offered a starter camp, the year that Caroline finished first grade. And it was a maybe a four night five day situation. So we sent her to that. And she had such a great experience. And so that just was on our radar like she was I just feel like camp is super important for all kids. So you know, we wanted to get her started as early as possible.   Stacey Simms  8:02 When she was then diagnosed with type one, did you hesitate sending her back.   Shelby Hughes  8:06 Now, um, I think she she was diagnosed in the middle of her second grade year. And the only hesitation was I was worried that the camp wouldn't accommodate her and would say no, she can't come we can't deal with that. So that was our only issue. And when we got in touch with the camp director, and she said no problem. You know, we'll we'll work it out. We were We were all ready to go.   Stacey Simms  8:33 Wow, that's great. All right, and we'll get into the details of what we had to we all have to do for those accommodations. And for us as parents to be able to just be able to sleep through the night ourselves when our kids are at camp. April. Tell me a little bit about your camp experience. How old were you when you went to camp? And did you have type one at the time already?   April Blackwell  8:54 Yeah, so I I have always with my nerdy persona, but I did go one summer I did a back to back space camp in California when that was still open. And the next week I went to diabetes, to very like different, you know, scenarios for a person with diabetes. And this was only about a year or so after my diagnosis. So I was still doing injections. I didn't have any basically no technology at all back in the dark ages. So I think in some ways that helps maybe because my parents weren't used to getting, you know, share data all day long. And so it sort of put that independence on me to you know, take care and manage my diabetes on my own. And I think that was a big step for me personally, just because I wanted to be like everyone else and have sleep overs and go to camp and stuff. So it was a big motivator for me to take my diabetes. He's on myself.   Stacey Simms  10:01 And I'm sorry, did you say how old you were when you went to that camp?   April Blackwell  10:04 I think I was like around 12 or 13.   Stacey Simms  10:07 Okay. Did you go back to diabetes camp? Did you go back to regular camp?   April Blackwell  10:13 I, I never went back to those two camps. Actually, I did some other like church camps and stuff. But my summers just seem to get really busy. So it was hard to fit in those other camps.   Stacey Simms  10:25 Yeah, that's the tough age. When she gets to be about 14. I think there's so much going on. Right? It's hard. And our camp experience, which I've shared before is that my daughter, like you, Shelby, my daughter went to this camp, my older child is three years older than Benny, and had a great time and would come home every summer and say, I can't wait for you to go. And I'd be like, there's no way he's going. And we were very fortunate, in my opinion, because it helped me, I don't know about Benny, but he was going to diabetes camp. And he was able to go when he was seven. So he went for a week to diabetes camp. And then the next summer, he went to diabetes camp for a week, and then his regular camp for two weeks. And I say we were lucky because it got me used to the idea of him being away understanding what needed to be done, even. And we'll get into this later, even adjusting basil rates for activity and things like that. But he went for two weeks when he was eight. We did not have share yet because it wasn't even around. And he just had his deck. No Did you have a Dexcom that first year he did not have a Dexcom that first year it was fingerstick only. And then the next year he had share he had Dexcom no share. And that next year at age nine, he went for a month and he has gone for a month every year since except for COVID. And this year, the camp is going to Israel for a month. That's the age group where they go to Israel. So we are dealing with a totally different in my opinion environment. To him, it's the same thing. But that's a different episode. So that's our summer camp experience. And it has been it has not been perfect Far from it. But it has been I think one of the seminal experiences of his childhood, and is certainly influenced him in a great way and given him a lot of confidence and independence. given me a lot of sleepless nights. Alright, Shelby, let me start with you, when your daughter was was going back to camp she was they were familiar with her, they knew what were some things that you talked to them about, to kind of get things, you know, set her up for success. Was there anything that you did at the time or learned since that made it a little easier for her and for the staff.   Shelby Hughes  12:28 So um, one of the things, they did have a full time nurse, which was great. And the nurse was very willing to be trained on all things pump related and CGM related. And she at the time had the Medtronic 670 g, which automatically adjusts her basil rate, as long as she's an auto mode. So I figured that would make things a little easier than people wouldn't have to be fooling with our pump, adjusting rates and whatnot. And also, I got, the director got me in touch with the cafeteria staff with the head of the dining hall. And she was fantastic. She sent me a list of everything that they were going to be serving every meal for the entire time. So that gave me the opportunity to, you know, give them some carb counts. So they were very willing to work with me in terms of, you know, figuring out what she was going to eat and and what the carb counts were.   Stacey Simms  13:34 April, I know, it was kind of a different time, as you said, you went you say no technology, but you had shots and you had your meter, which is tech. Did anybody help you? I mean, at 12, you probably were okay. But I would always assume that there might be a little supervision or kind of over the shoulder. Are you doing all right? Do you remember how it was handled? What you did?   Right back to April answering that question. But first Diabetes Connections is brought to you by Dario. And over the years, I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Daario diabetes success plan is all about you. All the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for you on how to succeed, get the diabetes management plan that works with you and for you. Dario is published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash Diabetes Connections. Now back to April answering my question of what her camp did to kind of help keep her on track.   April Blackwell  14:49 Yes, so this is actually something I think is really great about space camp. To the point that it inspired me to become a counselor while I was in college, but they're just You know, a very, they have everything planned out and under control as you would maybe expect space camp to have. So we had if you're familiar with Star Trek, we had a sick bay. That was it was just part of the camp experience. And even though Space Camp isn't necessarily geared towards kids with health conditions, it became just a seamless part of the whole camp experience. So, you know, every before every meal, the whole group would just swing by sickbay. And anyone who needed to take meds or like me check my blood sugar, take a shot, we just go into like they Well, everyone else was playing kickball or something, you know, for a few minutes. And it, it was awesome, because it didn't make you feel singled out at all. And it was just part of the whole camp experience. So I think that's a really great feeling as a kid. And it allows you to have that moment with the nurse or doctor to have sort of a one on one conversation about any sort of dosing Delta's that you should incorporate for upcoming activities.   Stacey Simms  16:11 She'll be did your kiddo have a similar experience like that? Did they do anything?   Shelby Hughes  16:16 That was kind of the same thing. There were other kids that took meds before meals, and they would kind of divert to the nurse's clinic. And she would, I think, I don't think she would take her insulin before meals that I think that the nurse would check her blood sugar, make sure her you know, everything was good with their pump. And then after, after dinner, I think she would, she would head by there and the nurse would would help her figure out how much to put in her pump.   Stacey Simms  16:48 It was really reassuring to me, I remember starting to kind of plan this in January of the year he when when he went in, you know, July or August or whenever it was, and calling the medical people and saying how are we going to do this, you know, at eight years old, I need eyes on him to make sure that he's changing his pump site to make sure that his insulin cartridge is full, you know, trust but verify you're very independent, good kid, but still eight years old, you know, you're not gonna let him walk around camp by himself all the time doing everything. So she laughed and said, Oh, that whole cabin goes gets medication. That age, you know, and you forget that there are other kids with issues go into camp. And what we we didn't have to work it out at all. Because that cabin and not everybody, but you know, a bunch of the kids in that cabin would get in a golf cart. This is a very large camp, get on a golf cart, and go up to the infirmary, which I'm going to suggest which should be Star Trek themed as sick. But they would go to the infirmary every night. And so when he was eight, that very first year, what we decided was, he'd go up with them every night, and they would physically look at the pump, and make sure that it was an animist pump. So had a battery, no charge, but they would check the battery, they would check that it had insulin, at least for the night, that his pump site, you know, they kind of kept track was changed every three days or whatever. And it just made me feel better that they had eyes on him. And it made them feel better, as well, something we added in the next couple of years, as I realized that, frankly, they weren't on top of the site changes as much as I thought they would be because they trusted Benny, who's a very wonderful kid, but isn't going to change his instead of three days, unless somebody is reminding him, let's face it. So what we did was at meals at most camps, they have meds in the dining hall, because a lot of kids have to take medications with food, at least at our camp to have a table. So I said, Why don't you just bring the inset every three days and pretend it's like an antibiotic or an ADHD medication, like write it down. And then every three days here, let's watch you change it. And he loved it because he truly had did not have to think about it at all. And that really helped once we started incorporating it more as a regular kind of medication thing. It made a lot more sense for everybody. And it took us I don't want to say three years before we thought about one of the things that I always like to think about is I want to make it easy on the camp. And I'm curious April, if your parents I know it's kind of a different time or whatever. It wasn't that long ago. Did your parents talk to them ahead of time or try to figure out ways to make it easier on them or do any education of the staff?   April Blackwell  19:18 Yeah, definitely. I know they were in contact with the the nurses group at their at Space Camp, before we even signed up to go to camp to make sure it was something feasible because you need to get your hopes up about going into camp and then you know have to do a detour. So that was really important and also our our endocrinologists, our pediatric and it was so good with this stuff. So they had you know, these resource papers to be able to give to the nurses topics to talk about while you're there checking in how to like set up all your supplies and have backup supplies and So I, I know my parents use those resources and share those resources with the nurses. They're at Space Camp.   Stacey Simms  20:08 You know, I meant to ask, one of the things that I get asked a lot is how does your child carry supplies around camp? I'd be curious to know, April and again, I'll start with you. How did you do it? obviously different technology. Did you carry stuff everywhere you went? Did you have a central location.   April Blackwell  20:25 So the space camp in California was pretty small. So we, we had everything centrally located at the nurse's station. When I was a counselor at Space Camp in Huntsville, Alabama. It was a bigger facility. And the part that I was actually a counselor at was a little ways away from where the nurse's station was. So if we had any kids with issues that would potentially need immediate attention, we just carried like a little backpack with us and had their supplies with us all the time. Sometimes we'd be out in the woods or swimming or you know, doing some other activities. So we just like every counselor carried a little backpack and we had our own stuff, but also our our camper stuff in there, too.   Stacey Simms  21:12 Yeah, that's great. How about you Shelby? Did your daughter carry stuff?   Shelby Hughes  21:15 She did. She had a little like a little sling back, you know, backpack where she just kept water and glucose tablets. She didn't carry major things like sight changes or insulin. That was all in the nurse's station. But yeah, just just emergency things.   Stacey Simms  21:37 We sent Benny with a Camelback, you know, the kind of backpack that you have water in. And that worked out well, for a couple years. Then he was like, yeah, forget it, just taking the sling bag. He liked to have inserts. Because the pool for a while was notorious. We did find some stuff that worked. Everybody's skin is different. And this is not an endorsement and it's not a paid endorsement. But I will endorse a state put medical patches has been the only thing that works for him. And like I said, everybody's skin is different. But for a long time he carried in sets just because the pool was such a pain for him. But also, you have to have reasonable expectations. I know you all are wonderful and your children are super responsible. But Benny got Viggo. He's gonna like best camper or over silly awards, at the end in their cabin. And he got like most likely to leave your bag everywhere. And they were always bringing him his bag. You know, it's just ridiculous. But as he got older, he got better at that. And you know, you do have to have your stuff with you. And now I don't know, it seems like everybody, all these teenagers carry bags, diabetes or not. They always have stuff with them, even the guy so it's not a big deal anymore. As much as I'm interested in your experience, too, as a counselor, what kind of things do you think set a camper up for success? And listen, when I'm talking about success, I don't mean that their blood sugar is 95 the whole time they're a camp, right? You're gonna go up, you're gonna go down, you're gonna have wonky numbers. But I mean, like they're able to have a good time with minimal interruptions. They're able to leave with confidence. Is there anything that kind of goes through your mind, as I say those things? Yeah, I   April Blackwell  23:09 think preparation is key. And not just logistically the supplies and the directions for the nurse. But actually practicing being away from your parents or whoever helps you manage your diabetes for some shorter period of time. And probably very dependent on the kid too. But just maybe spending the night at grandma's house or friend's house for a night or two, and seeing how everything works and how it goes. And it's also, I think, a little preparation for the parents. Because in my experience as a counselor, you know, even though I had diabetes, and I did have a couple campers that had diabetes, as well, you know, their parents would stay in a hotel that was close to site, even though most campers flew there to go to space camp, but their parents would stay in a hotel, they would check on him every night or at some time during the day. You know, they may even give them injections or boluses. They had one who sort of like pre loaded their kid before bed with a bunch of pudding. Because they always went low overnight, which to me sounds like maybe we should change some other settings. But that's not my call to make so right. You know, as counselors, we we need to just respect the wishes of the parents I think is really important. And so, I don't know if you know, having that practice beforehand, for both both sides of it, the camper and the parents, I think is a good idea beforehand.   Stacey Simms  24:47 Yeah, man, it's gonna be hard to do nothing and then go to a week or two weeks away if your kids never been out of the house or you shouldn't say it like that if your kids never spent an overnight somewhere. That's a great bit of advice. Shelby Any thoughts? I mean, is a bunch of questions there. But, you know, kind of to set up for success. Was there anything that you've learned over those years that your daughter was at this camp?   Shelby Hughes  25:09 Um, you know, I didn't think about it. But yeah, I think having them spend the night out before you, you know, shut them off for a week or more is good. Unfortunately, we had had some opportunities for Caroline to have sleep overs preceding the camp experience, so that that was good. And they weren't perfect. But you know, I think the goal is just to stay alive. And we're good.   Stacey Simms  25:39 We have a similar sense of humor to Shelby and I. So I know, I know, you have a sense of humor to April. It's just right. I mean, you know, we hate to be blunt, but you know that that's what everybody's scared of. Right? When you're sending your child off, and they they are fine, they are fine. They are   Shelby Hughes  25:57 now looking looking at CGM data after she came back from Camp, and I was horrified to see that she was, you know, running high throughout the night, we figured out later it was they were giving her like those Lara bars, Richard 25 carbs, you know, before bed, so, of course, she was running high all night, but you know, it was fine. She she had a good time, and she was alive. And that was what that was what mattered.   Stacey Simms  26:31 And I think this is a really good time to talk about expectations. Right? And, and what what are your goals for your child with diabetes going to a regular camp, and I'll kind of take an opportunity to speak on that, you know, if your goal is going to be that your child stay in a very tight range, you're going to set yourself up for disappointment most of the time. Now, some kids are rock stars, and for whatever reason, you know, they're they're able to do this, some camps are going to help you with that. But I always tell parents, you know, camp is not the time to worry about that. Incredible a one see that you're going to run and post on social media, but you shouldn't be doing anyway. Campus, the time for your child to learn about themselves, to stretch the limits, to push to make mistakes, to to figure out who they are when they're not at home. And the flip side of that is for you to figure out who the heck you are without your kids around. It is a gift and a full month. And I'm not an endocrinologist. So ask your doctor a full month at a slightly higher time in range right or slightly, excuse me slightly lower time and range a slightly higher blood sugar average, balanced with the incredible life experience that your kid is going to get is worth it. It's not you know, we're not talking about kids running at 300 for a month, if that's happening, you need to adjust things you need to I'll talk about checking in and things like that. But I know I'm in a bit of a soapbox here. But I really believe that giving Benny the opportunity to make mistakes and to learn at camp. And you know, I'll be I'll be very open because I know people tiptoe around this. You know, his agencies throughout his whole life have been fine. Sometimes they've been great. They've been amazing. Sometimes they've been minor. But a camp has average blood sugar was usually and this is over seven or eight years, anywhere between like 150 and 200. Sometimes I think one year is he came home and it was like 220. And that's when we realized we also need to make some changes, the hormones were insane. And we need to pour like gallons of insulin on him. Some of you heard that and are calling Child Protective Services. Right? You think I'm the worst? I am the world's worst diabetes. Mom. Some of you heard that and say, Oh my God, that's doable. I can I can live with that. You've got to figure this out. Because if you think you're going to send you if you think you're going to send your child to diabetes camp, and they're going to be 83 the whole time. They're there. You are in for disappointment. All right. I'll get off the soapbox. April. I saw you nodding. I'm not a terrible parent. Right?   April Blackwell  29:07 Absolutely. And my kids aren't quite old enough to send to camp yet there are only two and five. Oh, gosh, I'm not quite to the center camp age yet. But you know, they have spent nights away at grandma and grandpa's house before so even even though they don't have diabetes, you know, the worry still creeps in and, you know, making sure there's instructions or you know, times was really important to me for my first hit. And now with a second I'm like, whatever, you know, just have fun. Like, hopefully they get a nap in there at some point. Yes. So I imagine with diabetes, it's still very, you know, maybe amped up a little bit just because there are, you know, real consequences eventually for for numbers. But, you know, I think that's important to realize and kind of pull back that You know, when you're looking at how much a kid can gain from a camp experience, you just you can't put a number, even a blood sugar number on that. So as long as they're safe and healthy, I think it's an absolutely necessary experience.   Unknown Speaker  30:17 Wow. How about you, Shelby?   Shelby Hughes  30:21 Well, I was going to talk to the fact that at diabetes camp, which she also went to that same summer, that first year she went to non diabetes camp, she probably her her blood sugar was probably a lot higher at diabetes camp, because they're, they're more, I guess, more cautious about them being too low. So she told me, they would check her blood sugar and say, Oh, you're 150 here have a snack.   Unknown Speaker  30:51 Same thing.   Shelby Hughes  30:53 And we really we joke about that now, like, she'll say, Oh, I'm at 150. I should have a snack. But I can't remember the question. What am   Stacey Simms  31:02 Oh, that's okay. Um, and I think that's a good just quickly, I think this is really good to talk about context. Right? Because 150 at diabetes camp, have a snack. Makes sense. There are dozens of kids there. They are doing lots of activities. They are trying to keep everybody safe. They probably you know, at the time, I know every campus kind of trying to keep up here. Nobody's monitoring everybody's CGM. Right, so it's totally different setup. But when you're at home, 150 have a snack is funny. Because you know, she doesn't need it. Right. The question was the balance of running a little higher and being okay with that at camp?   Shelby Hughes  31:40 Oh, absolutely. You know, I think camp is, I guess, because I went to summer camp for a month, every year when I was a kid from the time I was nine till I was 15. And it shaped who I am today, I would not be the same person. If I had not had overnight camp experience. And I see my kids friends that don't go away to camp. And now they're 18. And they're state date. Some of them struggle with going away to college. And I feel like if they've gone to summer camp, they might be doing a little bit better. So I guess that's, I'm a, I'm a huge fan of sleepaway camp, you know, no matter what. So I agree, running a little bit higher to have that life experience is definitely worth it.   Stacey Simms  32:34 One thing I want to make sure to mention, I talked about this towards the beginning of our little roundtable here, and I wanted to circle back to it was adjusting basal rates, because when your diabetes camp, you know, they'll send you home with the form of we adjusted everything. Usually they knock the kid down 10 to 15% less basil, because it's so active. But by the time diabetes camp was over, Benny usually was getting 25% less insulin because they were so active. And it's really hilly, and they do lots of swimming, and there's hiking all this stuff. So what we would do is use that as a baseline for, you know, regular camp, I loved it, because it was like a great test for that week. And then he'd go for the month, we found regular this regular camp to be even more intense than diabetes camp. So we were always adjusting. And one of the things we did we put in place in the second year and going forward was, I would check in three days after he was there. They would call me if there was anything to deal with before that, they would call me three days in. And then every Sunday, we would have a check in. And usually the check in was like I need deodorant or stamp serve is ridiculous. It was never It was almost never about diabetes. But it was a good way for me to check in and say Do we need to adjust basil? Is everything going? Okay, how our supplies looking? That kind of stuff. So I know that she'll be your daughter was at Camp a little bit less time. But did you talk to them about when to call you or checking in on anything like that?   Shelby Hughes  33:58 The first year she went, we didn't have any scheduled check ins. It was such a short period of time, but the nurse was really, really great and would text me and just say, you know, everything's looking good. She changed her site today. And, you know, just just a brief, you know, let let mom know that things are things are okay. We didn't, you know, we didn't really have the need to do any formal. Any. And there were no times that we really needed to make adjustments because the the time there was so short.   Stacey Simms  34:29 April, I want to ask you about that kind of as a counselor on the other end, because you would be the one getting the phone call. I'm not gonna ask you as you said, You've got to listen to what the parents want. So I'm not asking to make a judgment call here. But what was helpful that the parents that some parents did that you would recommend, was there anything that they did that you'd say yes, that's a good one.   April Blackwell  34:51 I think preparing beforehand and being ready to talk to the counselor. I know every camp is a little different and how we did it at base camp was each team would have two counselors. So like a morning and afternoon, evening, and having a face to face with the person who's going to be next to your kid for eight or nine hours a day or more, I think is really important. And you know, it also kind of calibrates the counselor with how serious this could be, things to watch out for, because they may not be that familiar with it. You know, when when to call the nurse, because even that may be a little bit foreign. If you're not familiar, maybe specific signs your child has for going low or going high or times to check on them. I think that face to face time is really important if you're if you're able to do it. So I know my parents did that with my counselor. When I went to space camp, I remember them sitting down and talking to her face to face. And I did it with several of my campers as well. So I think it's really important.   Stacey Simms  35:59 That is that's really good. One of the things that I also like to talk about is there are very few non negotiables for me, when I send Benny to camp or my daughter for that matter, but I do have one. And this is the kind of thing where I tell the camp upfront look, you know, things are gonna happen. diabetes can be wonky. Usually Benny can troubleshoot you don't have to call me. And like most camps, they're gonna call you for kids running a fever, or you know, anything happens. anything out of the ordinary. But my non negotiable has always been if he throws up more than once in 24 hours, they must call me because more than Lowe's overnight, which I know most people are terrified. I'm not that worried about Lowe's overnight. You know, it's it's rare that those are actually emergencies. And Benny always sleeps at camp with a, you know, a drink by his side or glucose tabs by his side, which I should have mentioned up front. This is I'm getting off topic here. But one of the best things we did for both my kids was we found these next two bunk shelves. They're like fabric shelves or you know, bunk bed shelves. There's all sorts of different kinds of just, you bring them to camping and shove them into the bed. And then they had a little shelf next to them. So when Benny goes on sleep overs, I don't even think he does anymore. He's 16. And it's a different world for him. But when he was younger, he always had a Gatorade next time it's sleep over. So if you woke up and felt weird, our rule is drink the Gatorade, then check your blood sugar. And that's not how we do it at home. It's like the 150 have a snack. I would never say drink 25 carbs before he checked your blood sugar. But at a sleepaway camp, just do it and check and we can figure it out later. And he does the same thing at camp. But I'm worried about highs, I worried about dehydration, I worried about them not really knowing if he was high, because nobody was following him on Dexcom. They looked at his blood sugar when he was younger. So I was terrified of decay and things like that. Never happened never got close. But that was my one non negotiable. And that'll be my non negotiable for this summer, too. Do you all have anything like that? April, I'll start with you. You know,   April Blackwell  38:02 I don't know that my parents ever did just because I didn't physically have any symptoms like that outside the camp. And I think that really dictated what they discussed with the nurse and the counselors there. So I know that I did carry glucose tablets, those like really gross square ones that are in like, packaging. I don't even know if they have those anymore. But I remember sticking those in my I even got special shorts for when I went to space camp that were like cargo shorts. So they had extra pockets for the Yeah, but I don't remember them saying any specific symptoms like that. To the staff there.   Stacey Simms  38:43 Did and I should have asked you this earlier. Did anybody have to supervise you? I mean, at 12? You were probably independent enough, but I'm just curious, do you remember if anybody like watched you do injections or your meter over your shoulder or anything like that?   April Blackwell  38:57 I just checked my blood sugar at the nurse's station. So the nurse or sickbay? The nurse always did. You know, look at the number I assume she you know, processed that and and thought about the injection I was giving if it made sense. But no, I don't remember anyone supervising me really close? Yeah,   Stacey Simms  39:20 I think that's just kid age, you know, appropriate different stuff. You know, I don't think anybody really watches Benny anymore. But when he was eight, the I know, they looked over his shoulder. They didn't know what they were looking for. You know, I tried to give as much education as I could. But yeah, that's   April Blackwell  39:35 a good distinction, actually. Because, you know, at Space Camp when I was a counselor, we had kids from age seven all the way to 18. And you've definitely treated each age group differently and looked for different things. And it was even a different sort of mindset for the counselors. You know, if you were a counselor for the younger age group, you usually just work with the younger age group. And it was different set of counselors that worked with older age groups. So yeah, you kind of just get you trained yourself on what seven and eight year olds need from a counselor, which is more like a mothering thing than what 17 and 18 year olds?   Stacey Simms  40:14 I mean, at that age, you're still like, are you using soap in the shower? Like, you know, there's all sorts of different things that poor counselors have to do shall be saved, you have to have a non negotiable or anything like that. Um,   Shelby Hughes  40:26 you know, it's funny, because I got, I think, kind of a set of directions from you before I sent Caroline to camp that you had, you gave me like a draft of what you had given to Ben? Oh, yeah. And so I can't remember if there was anything in there that was you know, about vomiting. Okay, so I must have had that in there. But I don't remember, particularly going over that with the nurse or with the counselor. Just because it's, it's honestly, it's not ever we've not ever had an issue. vomiting is never caused any kind of a of a problem for us. So, and back then I was still new. So I really probably wasn't even on my radar. Yeah, let now there there were no non negotiables. But now thinking back maybe there should have been fun. You know,   Stacey Simms  41:22 I think it's all a question too, of trusting the medical staff and you had already had kids go through that. So like I said, they're going to call they called me, you know, for my daughter hit her head on the side of the pool. They call you for the he's got a rash they call generally, they're going to call you for those things. And we've where I got a knock wood or something Benny's never had even large ketones maybe once or twice in 14 years, he's never had vomiting associated with dehydration or things like that. Knock on wood. We've never had that problem. But for some reason that stuck in my mind is something like, Uh huh. This is going to be the thing that happens at camp. And you know, I am I'm kind of Cavalier and I make jokes, and I worry a lot. Right? You, you can't help it, you still send them. But and I think that's just a mom thing. I mean, April, your kids are too little for camp, and they don't have diabetes. But you've got to worry a little when you send people to grandma's house. That's just mom stuff.   April Blackwell  42:21 Exactly. Yep. Absolutely.   Stacey Simms  42:23 Yeah. And mentioning the the forums, Shelby, I forgot that I did that, you know, I have these like, they're nothing. It's nothing that you can download. It's nothing formal. Shelby and I have known each other a long time. So I just sent her my stuff. But one thing that was very helpful if your endo is on board with this, we typed up kind of an action plan. And I'll look at it and make a note at the end of this episode, or in the show notes. It wasn't super detailed. It was kind of more if this, then that, like Benny will do this. And we hope you'll support with that or like really insets to the med table or go into sick beta, check your blood sugar, those kinds of things are written out. And then we had our endo sign it. Now, my endo, God love him will pretty much sign anything I give him at this point, right? I mean, it's been 14 years, he knows we're okay. I'm not going to give him anything crazy. He would tell me if he thought it was off base. But this was fantastic. Because the magic words are always my doctor says. And if the camp sees that the endo has signed off on this plan. Not only are they going to probably follow it more closely, they're going to be much more reassured. Because a medical professional has looked at it. So I found that to be I forgot all about that Shelby, thanks for bringing that up. I found that to be really good. And I did that my kids went to day camp to and Benny went to you know, regular day camp. And that was super helpful for them. And we're actually doing to get in for Israel. You know, and my endo will Cyrus endo will sign off on it. So that's pretty good.   April Blackwell  43:50 I was just gonna say I think using your endo as a resource can be really helpful because if it's a local camp, they may have other kids in the in the practice that are going or have gone and have tips for interacting with the staff there. You know, the internet is also a great place to look up some Reddit forums on certain camps and see what's going on. And, you know, there's other diabetes specific forums to ask questions about specific camps and if you are able to talk to a parent that is sent a kid to a specific camp i think that's that's worth a lot, actually. Because Yeah, inside scoop, so   Stacey Simms  44:30 definitely. And it's funny with our camp we had there were two kids who are already at that camp during the current time with type one and one of them did not want anyone else to know. He, I think that's a very tough way to go. We respected it. My daughter knew she was her age at the older group, and we respected it and nobody, you know, did anything. But I think that to me, I would be extremely uncomfortable sending my child to camp with him wanting to keep his diabetes a secret from as many people as possible, because you never know who is going to need to help. And another one of my, I would call it a non negotiable but I think a kid who's going to sleepaway camp who's got type one should know how to check his or her own blood sugar using a meter. Because things happen, even if you're Dexcom, you know, all over 24 seven, gotta know how to do your meter, got to know how to use your pump, gotta know how to change your own insets even if there's help there. And and I think you have to be a kid who's gonna raise your hand and ask for help. And that's something that you can teach. But you've also got to know your kid will do. And I see everybody nodding Shelby, was that something that you either you knew your kid would do? Or you had you thought about that?   Shelby Hughes  45:44 Well, Caroline's pretty responsible. I mean, I'm not gonna say 100% compliant, you know, she still forgets to bolus and she's, you know, she's 11 now, and she's independent at school. And still, she'll forget to balls for lunch, and, you know, whatever. But I felt like she was responsible enough to do those things. She, she, she knew how to check her blood sugar. I taught her how to change her sights. She doesn't probably her biggest issue is asking for help, because she does not want to seem different. And she doesn't want to call attention to herself. She just choose a shy kid. She does not like calling attention to herself about anything, including diabetes. But I think that if she really needed help, she would speak up.   April Blackwell  46:38 You know, I don't have a kid with diabetes myself. So it's a little bit hard for me to say, but I think it would be something great to tell the counselor when you meet with them, and just say, hey, like, they're not gonna tell you when they need help. I know, I actually experienced that myself. I remember actually, the moment we pulled up to diabetes camp and got off the bus and there was like a, everyone check their blood sugar moment, and my blood sugar was in the 40s. Just because I was like, so overwhelmed about going to camp with all these diabetics that I had never been around that many people a day. And she was like, do you feel low? And I was like, Yeah. Like, it was just, it was like, almost out of body experience. So camp itself can kind of maybe mask those, you know, symptoms or times when someone would feel comfortable speaking up, just being overwhelmed at being at camp and being excited about it could change a little bit. So it's it's something good to bring up with the counselor. I think   Stacey Simms  47:41 I do, too. We also had the counselors kind of check on him every night. And it wasn't Benny is your diabetes. Okay, what's going on? like we talked about it so that he would just say, Benny, are you okay? Like, Benny? Are you set? And what that meant was? Is your pump charged? Does your pump have insulin in it? Is your blood sugar? Like, are you feeling okay? Do you need me for anything? And so it didn't become this big conversation every night. But I still felt and I you know, again, I see you guys know, I say all the time about Benny, he's a great kid, and he's doing really well. But you know, he forgets he's staying down. He will wake up at two in the morning. Oh, my pumps, no charge, you know, things like that. So to set him up for success, we really felt like having the counselors involved, but not overly, you know, in his face about diabetes was very helpful. I don't know what really went on. This is my fantasy of what I think happened to camp I'm not sure because they tell me these things happen. But you know, Ben, he's gonna turn 25 and write his own book and it's gonna be like, nothing happened the way you thought I shouldn't say that. Like, that's terrible to put in people's   Unknown Speaker  48:42 but I do have you know, I   Stacey Simms  48:43 have my doubts that my perfect systems are executed perfectly.   Shelby Hughes  48:49 Alright, before I let you all go, is there anything you want to say any good stuff about camp anything we missed? You know, nothing, nothing earth shattering but after two years of regular camp, and two years of diabetes camp, and then of course last year, there were no pants. She was we before COVID she had made the decision that she only wanted to go to diabetes camp. I think and I and I we respected that. You know, she and I asked her why and she said I just don't like being the only one there with diabetes. So of course this summer now you know, everything's up in the air. The the one camp that we are looking at is now going to a modified sleepaway. Maybe I don't even know so I think we're just gonna skip camps all together this year, too, which is so unfortunate because she's getting to be the age where she won't want to get a camp when she's older anyway, but that's it. She just she she prefers diabetes camp now because she's not singled out. Cool.   Stacey Simms  49:57 April, any last words?   April Blackwell  50:00 I would just say one thing to watch out for is even if a camp generically allows or supports people at type 1 diabetes to come, there may be certain activities that are still restricted. I know at Space Camp, for instance, the older kids were allowed to go scuba diving in our underwater astronaut trainer. But that was not allowed if you had type 1 diabetes. So I guess, you know, think about kind of the activities that are going to happen at camp. And that's going to somehow negatively affect your your T one DS sort of mental state on that, because I think it would have for me, you know, being that singled out, not just check your blood sugar, but you can't do this activity. So be sure to think about that. And then the other thing is just, probably your kid's gonna be fine. And if they run into any problems, it's probably not even diabetes related. It's like, you know, they have a problem with this friend, or, you know, they're homesick or they're missing their dog or something. So keep that in mind that there's a lot more to kids than diabetes.   Stacey Simms  51:08 Wow. And you know, that's such a great point about the scuba, because there usually is an alternative. For big time adventure stuff. There isn't always so it's good to check. But I'll give another example. Two years ago, gosh, I can't believe how much time has gone by the big activity for Benny's age group at this camp included like this cave thing. And I don't know why it was cave swimming. I don't remember. But it was tiny spaces. And the way they described it like I wanted to, I wanted to throw up just because forget diabetes. I was so claustrophobic thinking about it. But my daughter had done it. Because she went to this camp. And we talked about it. And I was super uncomfortable. Like I let him do anything. But like holy cow, if you get stuck in a cave, like Oh, just type one. You know, they were they didn't say anything to me. I we didn't get that forward. I even asked them I asked Benny. And he was like mom, no way. I just sounds like a hassle for everybody. And he just didn't like the idea of it. So we really dodged that bullet. But there was an alternative program for any kid who didn't want to do it. Because it's it really was kind of scary sounding. And so that was great. But if you were you know, and the alternative program wasn't playing cards in the, you know, inside, it was doing another outside fun activity. But that's a great idea to check because there are there are going to sometimes be limitations, especially at camps that do not cater to people with type one who don't have all the facilities and all the knowledge. And we have to learn sometimes that there's there's going to have to be an alternative. There's going to have to be an adjustment that we in our children have to make. Does it stink? Yeah. But sometimes I think it's the price you pay for an overall wonderful life lesson and experience. Later, ladies, thank you. Thank you. Thank you so much for joining me. I really appreciate your time to share your experiences. It was so great. And I shall be I hope camp. Hope diabetes camp happens. or different things, you know, go this summer, but but keep us posted.   Shelby Hughes  52:59 All right. Thanks for having me.   Unknown Speaker  53:01 Oh my gosh, thank you all. Alright, thanks, Stacy.   Stacey Simms  53:10 Lots more to share. I'm going to talk about food, carb counting glucagon training, and share and follow at sleepaway camp. In just a moment. I want to add a couple of things to the end of this episode. But first Diabetes Connections is brought to you by Dexcom. And one of the most common questions I get is about helping children become more independent. These transitional times are tricky elementary to middle middle to high school. I mean, you know what I mean? Using the Dexcom really makes a big difference. For us. It is not all about sharing follow, although that is very helpful. Think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four to five finger sticks at school, or for a second grader to just show their care team the number before Jim. At one point Benny was up to 10 finger sticks a day and not having to do that makes his management a lot easier for him. It's a lot easier to spot the trends and use the technology to give your kids more independence. Find out more at Diabetes connections.com and click on the Dexcom logo.   Little bit more about camp and some tips and tricks that we learned along the way. Shelby mentioned the menu. I did this as well, I got the menu from Camp. And most camps know what they're serving every single day or they have you know, very even if they don't have a strict menu, they know the foods that they will be serving. So go ahead and ask for that. I broke it all down. I made a calendar is like a stamp that I laminated it, but let me close enough. I think they use it for the first year or two. But Benny found it was much easier to just guesstimate on carbs. I mean, he's that kind of kid. They were comfortable with him doing it. And one of the things that we started doing because honestly most camps serve very high carb foods. Think about what camp foods are going to be for kids, right you're you're serving them. food to sometimes hundreds of kids, some of these camps are very big. So it's gonna be quick and cheaper and full of carbs. So what I had him start doing was as soon as you walk into the dining hall, give yourself 25 carbs, you know, you're getting 25 carbs, and then do the rest after. And that really helped him at least get started. So he wasn't going that much higher than he would have, you know, after a big breakfast or things like that. That was very helpful. It is never going to be an exact science at these camps. Some places will have a helper. I know some parents have been very lucky. And they have a counselor who will sit or you know, a staff member who will swing by Ben, he hated that the first year, he had to show them what he was eating. And I didn't think about how difficult that would be, especially for a kid who likes to eat, and is on the bigger side. He got some blowback. And that was actually not a great decision that we made. I'm not sure I would do that again. You know, if you wanted second helpings, a lot of times he got an eyebrow raised at him. Luckily, he's a pretty confident cool kid. We talked about it, he shook it off, and he ate what he wanted to, but, but we had some blowback on that, that I had to discuss with them at at the end of the summer. We learned they learned it was it was a good experience all around. But just a heads up that those kind of things can happen. glucagon training. This is another non negotiable. I didn't mention it. But I think this is really important. The newer glucagons, Baqsimi, Gvoke Hypopen that I talked about, make this much easier. But I did the red box training, you know, those of you who were diagnosed, gosh, it's really only a year or two that those products have been out. So those of you diagnosed two, three years ago, know what I mean, you take the red box out, and you have to teach everybody how to swirl don't shake, you know how to inject that needle. It's much easier now. But I think it's important to talk to the camp about who would who would administer that. And we decided it would not be his counselor. The counselors in the cabin are all connected to the infirmary. And somebody is on call 24 seven, so they would walkie talkie. And what we decided was if they felt felt they needed it, they would call the infirmary to come down. And they could be there in less than five minutes. I mean, it was really something that we felt good about. I think with vaccine me now and hypo Penn, whichever you choose, I would be fine with a counselor doing it. I just figured with the red box stuff. Everybody messes that up. I mean, so many studies show that most people even more trained, don't do it correctly. So I kind of stopped training people on it, which is why I legitimately Yes, it's a commercial. But I'm so glad to have alternatives. Because it's not safe not to train people on that and never had to use it. But that's another non negotiable. And let's just talk for a minute about share and follow. Sometimes the decision is made for you on this because there's no Wi Fi or cell signal at camp. Benny's camp is in the middle, we call it the middle of the middle of nowhere. Wi Fi service is terrible cell service is pretty much non existent. Another carrier has a better luck there. You know Verizon is okay. But we have at&t that sort of thing. The first year he went to camp, he didn't even have Dexcom. As I mentioned, the next year he didn't have share. So by the time he was going back to camp for the third year, I was like, I'm not gonna use shared camp, it wasn't even a concern. It wasn't even a thought. And I get a lot of parents who look at me like I'm absolutely bananas for not sharing. So here's what I have to say about that. I actually think it's better overall, if you can let your child go to camp without the share and follow. Now, you've got to talk to the counselors about the beeping, you know, Benny had his receiver, always next to him in bed. And what that means if he's beeping overnight, right, if he's low, and it's urgent, low goes off, they've got to make sure he's okay. But they're in a cabin together. They don't need to remote monitor him. They're in the same room with him. So they're gonna hear that beeping. So I always felt okay about that. And then we use the T slim pump. So the CGM is right on the pump. So you don't need the receiver anymore. But I did a talk about camp earlier this year. And I had a mom and I didn't I don't think about this, because we don't use Omnipod. She said, I have to use the phone. We don't have a receiver. Our camp has a policy, no screens, no screens, even a phone is a screen. So I immediately was thinking how is she going to do this. And I think I would rather have my child who is used to using Dexcom. Use the technology, you don't have to take the Dexcom away, right. So use the phone as the receiver because the Bluetooth will still work, haven't put it on airplane mode or whatever. But the Bluetooth will still work in the phone, the alarms will still go off, talk to the camp about, hey, she's not playing games, they're not taking photos, make sure your kid is following the rules. If you don't have a receiver, and the phone is all you've got, I think that that is better and more realistic than expecting a child who's used a Dexcom either since day one, or for a couple of years to go back to finger sticks. You're just not going to get the results that you want. I mean, let's be real. As I said in that commercial, I just said you know you're not going to do the middle schoolers not going to do the finger sticks if they've got the Dexcom Why would they do So those kind of accommodations can really help. But in terms of the parents following along, here's the question, if the camp lets you do this, and you think it's vitally important, you guys have to set up a plan with camp. If it's 2am, and the low alarm goes off, Who are you calling? What are you doing? Right? Who are you alerting, they already know, they're already on it. And if you want to double check, pay, that's your prerogative as a parent, if the camp agrees to it. You just have to have a plan. I would not know who to call, I guess I would call the infirmary. And I couldn't call the cabin, you have to kind of figure out those things. And I know we're getting really long. But just one more quick thing. I have seen this happen at our local diabetes camp. If your child uses non FDA approved technology, you nightscout folks know what I'm talking about you openaps people, I see you out there, you have to have a conversation with the diabetes camp, about whether they will be allowed to use it. Now, this is years old of this conversation. So most diabetes camps have settled it. I talked to a mom who loops with Omni pod, which is not FDA approved right now about what to disclose to her regular summer camp. Isn't that an interesting question? It's not FDA approved. But she's sending them there with the loop. Because it's better, she gets better control, then the Omnipod by itself. So, you know, my advice was to kind of explain it to them, you'd have to go into all the details about you know, big red flashing light, this is FDA, this is not FDA approved, blah, blah, blah. But I thought that was a really interesting question. Maybe we'll put that in our survey this week. Or I'll ask in the Facebook group, you know, how much do you disclose to people who don't really understand and don't need to really understand, you know, she she needs to know that if the Reilly link craps out or gets wet, you know, that kind of thing at camp, she has to have a plan B. And I think that's fine. But man, you know, the Do It Yourself crowd is fantastic. You know, I love you. But when you've got people who have liability issues because they're taking care of your kids, I'd be interested in hearing some of those stories and how you've done it and maneuvered and made everybody comfortable. Okay, well, thanks for sticking around. thank you as always to my editor John Bukenas from  audio editing solutions. Thank you for listening. We've got a classic episode coming up in just a couple of days. Advice for taking diabetes, to Disney to Disney World and Disneyland because those vacations are unlike many others, and they're very expensive. So how do you do it? We'll talk about it. I'm Stacey Simms. I'll see you back here in just a couple of days. Until then, be kind to yourself.   Announcer 1:02:42 Diabetes Connections is a production of Stacey Simms Media.   Benny  1:02:46 All Rights Reserved all wrongs avenged.  

We can't wait to travel again! Looking back on this episode really makes you want to hit the road. Jeremy Larsen is an American currently living in Japan but he's traveled the world. Jeremy started the 70-130 project (the “perfect” blood sugar range) to show that type 1 diabetes shouldn’t hold anyone back from travel. In 2017 he came back to the states to do a national parks trip and now he blogs and posts videos over at T1D Wanderer. This interview with Jeremy took place in October 2015. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription Stacey Simms  0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of did you know? stuff.   Announcer  0:13 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:19 Welcome to a classic episode of Diabetes Connections. I'll be so glad to have you along, we aim to educate and inspire about diabetes with a focus on people who use insulin. These classic episodes are a chance to revisit episodes that aired in the first and second year of the podcast, when frankly, we didn't have quite as many listeners. And it's always fun to go back and check in with these folks. I spoke to Jeremy Larsen, back in 2015, he has traveled the world and he is currently living in Japan as he was when I first spoke to him. He started a project that he called 7130, the perfect quote unquote, blood sugar range to show that type 1 diabetes shouldn't hold anybody back from travel. Jeremy was diagnosed with type one when he was nine years old. And he says he got the travel bug from his parents and he's from America. He's an American citizen living abroad. And he says he spent a lot of his childhood seeing the US from the back of the family car. He has been all over the world. And you can see from his many, many videos, where he usually shows his blood sugar talks about his management, he's far from a perfect guy. That's not the point. He says, as you'll hear, it's more just about getting out there and living well. With type one little bit more on Jeremy is doing these days. I'll catch up in just a moment. But first, this episode of Diabetes Connections is brought to you by insight the breakthrough, a new history of science podcast created by Simon Simon is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. The latest episode features the question does snake oil actually contain snakes, it's a look into how this phrase snake oil came to be. And it was kind of surprising. It's a little gross. But it's also very interesting. I got a sneak peek of this show at the beginning of the year. I love it. I've subscribed to it. I listened to every episode. They're all terrific circuitry inside the breakthrough wherever you found this podcast. And if you're listening through the website or on social media, there is a link to inside the breakthrough at Diabetes connections.com. And this podcast, as you know is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. When I reached out to Jeremy Larsen back in 2015, he was because I was just really intrigued by his Twitter feed. He was traveling all over the place. And he was always showing his blood sugar. And he had interesting stories about everything that you would we would expect, right finding insulin language barriers. We talked about that a little bit, you know, talking about what sang type 1 diabetes in different languages. He was just as fascinating to talk to him as I had hoped. And we actually connected again a couple of years later, he did a huge road trip across the USA in 2017. Going to different national parks. I think he talks about that in this interview that he was planning that and when I caught up to him recently, he said hey, I'm actually still in Osaka, Japan still teaching although we're watching the Coronavirus numbers with concerning the canceled big Amtrak travel plans last year he has been biking to and from work every single day. And he has a big YouTube channel. So I will link to that now as well. So you can check out what he's been up to. One more quick thing I need to let you know, my intro to this interview. Initially, the beginning of my talking had a lot of music under it. I did things a little differently back in 2015. So it'll be really weird. If I play that now. It'll sound odd. So I will just set it up to tell you that at this point. Jeremy is talking to me from Japan. I am in North Carolina. And I'm starting out by mentioning the time zones here. I thank him for joining me today. Or maybe it's tonight.   Jeremy Larsen  3:57 Tonight, my time early morning, your time.   Stacey Simms  4:00 Let's start. When you were diagnosed, you were a kid you were living in the United States. You grew up in the southeast. How old were you when you were diagnosed?   Jeremy Larsen  4:10 I was nine. And I was living in Augusta, Georgia. I don't remember a lot about it, except that my parents say I was laying around on the couch a lot and had no energy and all that kind of stuff. drinking a lot of water going to the bathroom a lot. I think it was the lack of energy that really, really concerned them. And as I recall it, and I was only nine I'm not sure how accurate This is. But I recalled that they took me to the hospital on December 24. I know it was December 19 just a few days before Christmas. And I don't remember exactly what happened. But remember somebody probably my dad saying that you might have diabetes. And I had heard that word. I knew it was something but I didn't really know what it was right. So I was in the hospital for several days, you know, and of course it was diabetes. And I remember them saying The doctors were real good, never saying they weren't sure I was going to get out for Christmas morning. But they were trying to do that. And I didn't really care. I just wanted to get better. And finally, they let me get out on December 24. So I actually went home and had some kind of Christmas morning the next morning. So that's kind of all I remember, I remember a few things from the hospital, but it was just basically pretty, probably the pretty standard story from back then.   Stacey Simms  5:28 Yeah, when you're nine years old, you kind of just want to get back to your, your friends. And if you play sports, and just doing what you want to do.   Jeremy Larsen  5:36 I remember some of my friends at school had given like, Christmas presents to each other, and somebody had given me a box and I had like a giant candy cane in it. And I was kind of looking forward to getting back to that. And my parents had thrown it out about that.   Stacey Simms  5:51 Do you remember kind of life changing quite a bit? Or did your parents treat this as Okay, we're just going to go on, as we did before with diabetes?   Jeremy Larsen  5:59 No, that's exactly how it was. They just, they were really great. They were obviously very concerned and everything, but um, they kind of presented a just Well, that's how it is kind of face to me. And that's just how it was. I don't really remember a difference. I don't remember what life was like before it. You know,   Stacey Simms  6:18 we're going to talk a lot about travel today. Did you have that bug as a kid? Did you travel with your parents a lot?   Jeremy Larsen  6:24 Yeah, that's where it started. I don't I wouldn't say I had the bug. But we lived. I grew up in Nashville. Actually, I just moved to Augusta when all this happened. But when I lived in Nashville, Tennessee, and when I got when I lived in Augusta, we would take these long car trips once or twice a year down to Sarasota, Florida. And you know, especially from Nashville, that's whatever it is 12 or 14 hours, we do it one straight shot. So it was me and my sister and my parents, and we would just spend me and my sister in the backseat playing games and looking at license plates and all that kind of fun stuff. And we just got used to sitting for long periods of time and watching the world go by and we drove all around. We drove around the Mississippi once and just long, long car trips. I think that's where it started.   Stacey Simms  7:10 It's funny, you mentioned the license plate game and things like that, because I travel a lot with my kids who drive with the car, but they've got their movies in their iPads and they don't. I hope they look out the window sometimes.   Jeremy Larsen  7:19 I don't think they do. I still play the license plate game when I'm driving around America.   Jeremy Larsen  7:25 But you don't know,   Jeremy Larsen  7:26 Wyoming.   Stacey Simms  7:28 But you don't live in America anymore. How did you get to Japan?   Jeremy Larsen  7:32 Well, I had only I was still living in America. And I'd only left. The United States once now was for a month in Scandinavia. And that was a lot of fun just backpacking around, you know,   Stacey Simms  7:42 did you go by yourself?   Jeremy Larsen  7:43 Were you with friends? Yeah, by myself. Yeah. And that was just just kind of learning how to travel, how to be outside the US and how to find trains and how to find accommodation and stuff. And it was a lot of fun. But then I was back in the US. And I was working in Augusta, actually in Aiken, South Carolina. And I started I don't know what the thing what made me do this. But I started realizing I can I could not even not only travel overseas, I could live overseas somewhere. And I thought, well, how would I do that? So I started looking at websites and stuff. And I found that you could teach English. And you didn't really need any special qualifications depending on the country. There's a lot of different countries you could do it in. So I decided to go to Chile, because I was pretty good at Spanish in high school in college. And I still remembered most of it. So that I go to Chile, I'll be a teacher. And it turns out you had to have a teaching certificate or some kind of degree or something for GLA Chilean government's rules. So looked around. And then I kind of settled on either Japan or Korea because they had a good reputation for having a lot of jobs. And you didn't need special qualifications. And the salaries were pretty good even for introductions, introductory teachers. And then Korea kind of had a bad reputation. I don't want to smear Korea because I don't actually know they had a bad reputation for some of the schools didn't pay on time or wouldn't pay in Japan had no such reputation. Everybody thought Japan was pretty good. So. So I actually, I applied through a website to one of the big companies here in Japan and they flew I flew up to Toronto to have a an interview. And they hired me and a few months later, I came to Osaka for one year. My plan was one year, maybe two and that ended up being four years. And then I left Japan after four years went traveling a little bit and then I came back to Japan. I've been here another four years. That's where I am now.   Stacey Simms  9:40 What do you like about it? I mean, did you enjoy teaching or do you just like being in Japan?   Jeremy Larsen  9:44 My mother always told me that I should be a teacher and I always thought she was crazy because I never did anything like that. Like I was in I worked in newspapers I worked in like graphics and stuff like that. And just because that's what you do if you want to move here I started teaching English and it turns out I do I get it's, it's not really why I'm staying here. But it is fun. It's very, it's like, you know, most people have desk jobs where they just sit around and they're on a computer all day. But my job was just talking to people. And it's really a lot of fun for that. So the reason I stayed was kind of, it's just, to me, it's like traveling every day a little bit. Because as I don't read Japanese that well, I don't I'm not actually that good in Japanese, despite my time here. So whenever time every time I like walk down the street here, everything's kind of weird and new to me, still, it's still that way. And that's what I like about like a little sense of, I don't quite know what's going on. So I have to fight to you know, make my own way here. And I'm kind of used to it but still, it's it's an odd place to be. It's the people like me who thrive here are generally people who are probably more loners, or they probably, they just enjoy, they enjoy the challenge of trying to figure things out.   Stacey Simms  11:00 It must be just so fascinating, as you say, to feel like you're traveling every day. But we haven't really mentioned type 1 diabetes. Tell me a little bit about how you do it. Especially let's let's back way up. Tell me about your first trip that month of backpacking. It seems like this is second nature to you now, how did you prepare? And what do you do when you travel?   Jeremy Larsen  11:22 Um, it's kind of funny when I look back on my life, like because I was diagnosed at nine when I think of, you know, the rest of elementary school and junior high school high school, I don't really remember diabetes, like in high school, I don't remember if I took shots to school and took them or if I just took regular in the morning, I don't know what it was. Because I just had like a regular life. And I always, almost always tried to maintain diabetes, but I didn't really it wasn't like a huge, huge, huge thing. It was just something to deal with. You know, when I was in Scandinavia, all I really remember is that I had my glucose machine. And I was on human log and probably NPH. Yeah, human organ NPH at that time, and it was insulin pen with replaceable cartridges. That's what I was using. And I just, it was only a month. So I knew exactly how much I knew about how much I would need. And I made sure the doctor gave me probably two or three times that amount just to be careful, you know, right. And I kept it in a cooler pack, and just carried it around with me. I remember I carried a an empty Coke, coke bottle like an empty plastic bottle. And I would put my used strips and needles in it. Just carry them around month. And it got like all this bloody water and stuff. I remember crossing over from Sweden and Norway by train and some lady came by to check passports and stuff. And she saw that she just looked at it and didn't seem to care. Put it back in my bag. Sorry. But that's got to be the most suspicious thing she's seen all day. Exactly. As long as you have enough supplies, and all I have is insulin and blood sugar machine and strips. Just make sure I have enough I keep them in a couple different places like two different bags in case something happens to one. So it's not ever been in problem. Really.   Stacey Simms  13:09 You know, it's interesting to hear you speak about it. Because you're very low key about this. Obviously, you're taking care of yourself. You're doing what you need to do. But this I like that you don't remember what you did in high school to me that shows Hey, it's just life. We're getting through it. I mean, I don't remember all the stuff I did in high school. I don't have diabetes, it's just the way it seems to go for you. Is that attitude? You think something that is important as you live now in Japan?   Jeremy Larsen  13:31 Yeah, I think so. Again, it never really comes up here. Actually, the real I don't exactly know why. But I think one of the reasons and I don't know how cool of a story this is, but it is true. When I was in the hospital, and when I first got diagnosed, I remember you know, it's kind of a heavy atmosphere, like you've got diabetes a little bit. And I remember the doctors saying a couple times, well, you have diabetes, and that's not good. But the kid in the next room, he's got leukemia. Oh, geez. And another word I had heard that I didn't know what it was. And they explained that's much, much, much worse, you know? And I kind of think maybe because I eventually learned what leukemia was. And I kind of think maybe that's what gave me my outlook on diabetes. Like it could be much, much worse.   Stacey Simms  14:18 I think it's fascinating. You know, I'd love to talk to more people about their first impressions because I think it's very important. I don't doubt that that did affect you. When we were in the hospital with my son. There was a nurse who came by she wasn't our nurse. My son was not yet two years old when he was diagnosed, and we didn't know we were doing well. But what is this what's gonna happen? And she came in and she has type one, she was pregnant with her second child. And she said, I just wanted to come in and tell you everything's gonna be great. life's gonna be good. They told me I couldn't have kids. Here I am with my second. Don't baby Your son, get out of the hospital have a great life. You know, see you later. And it affected us to the point where we thought Oh, great. Look at that. I think if we had let ourselves kind of wallow in the world. mean nothing's going to be good ever again, it would have changed. But this great nurse came by and said, Dad, come on, it's gonna be okay. It really   Jeremy Larsen  15:06 a lot of people do follow it and they don't have anybody like that. And I think that sets them on a bad course this isn't a bad attitude. You know,   Stacey Simms  15:13 I think we were extremely lucky. So, Jeremy, now that you have traveled and you have traveled extensively, you started at really interesting project that I want to talk about. And that is how I saw you on on Twitter, this is your your Twitter handle and tell me about 7130. What is this all about?   Jeremy Larsen  15:36 7130 rows, really, because those are the numbers that the American Diabetes Association recommends for pre meal blood sugars,   Jeremy Larsen  15:47 right, that's the   Jeremy Larsen  15:48 best range, the best range for generally speaking, I think 70 is a little bit low for me personally, but that's what they say. So it's got a good ring to it. 7130. What happened is I knew another diabetic type one diabetic, and he didn't take care of his, I guess he took insulin a little bit, but he didn't. Like he got sick one night, like he felt really bad. And he called his father who is a physician. And he said, I feel really bad. And his father said, Well, can you check your blood sugar? And he said, No, I don't have any I don't own a machine. And I heard this story. And I mean, whatever that story is worked out. Alright. But I thought, and he's had a couple surgeries for like, diabetic retinopathy and stuff like that. Wow. I thought why do people do that? Why do people just not accept it like it life is so much better, if you take a few seconds, every, every few hours, whatever it is, check your blood sugar and try to get it right, you know, it's gonna be real high and low sometimes, but just try to try to learn more, you know, the the psychological barrier that some people have not being able to face, it is very unhelpful, and what 7130 is really to me, for one thing, it's way for me to brag about the traveling, I do, and I like that. And I like blogging and stuff, but um, it's a way to show people that you can go anywhere, diabetes doesn't have to hold you back. And if you watch your blood sugar, and really like, you know, accept diabetes, except that you have diabetes, and that's just how it is. And it's not that big a deal. It's not that hard. It doesn't always make sense. But it's a pretty simple process to take care of it. If you do that, you're more likely to do fun things, you're more likely to whatever your thing is, if it's traveling or if it's getting a certain kind of job or living in a certain place, or whatever it is you want to do sports or something like that. So it's really all about checking. I know a lot of people are, are knowing your blood sugar and maintaining, I know a lot of people are aching to find a cure, they just want to cure like I'm fighting to find a cure. And I like the work that people do, especially the jdrf. Like they all do really good work. But I think psychologically, I'm not so worried about a cure. If it comes, that's great. But there isn't one now so I have to deal with it now.   Stacey Simms  17:58 And this 7130 project is a video project a picture project to where you're basically taking pictures of yourself in your meter, whatever the number is, and sharing them what's what is the reaction been? I love the videos. I think they're they're really fun. And a lot of times, almost all the time you have a pretty good number, do you I shouldn't get ahead of myself here. But do you wait till you have a good number to stick it in the video?   Jeremy Larsen  18:23 It depends on which one it is there's different things. There's one I did called Osaka A to Z. The point of that one was I made a list of 26 places around Osaka This is while I was living here working so I couldn't be traveling. I was kind of stuck here. So I made a list of 26 places around Osaka from A to Z and I went to each one I took a picture of my blood sugar machine. And those I did do some cheating on if my blood sugar wasn't good. I would I would drink juice or take some insulin and wait a little bit or I just pull up a fake number. You would not? I would Yes. Because the point was the finished product. So I had like all these I think yes 26 places and I think they were all between 7130 that was the point right? After I did that I thought that what happened was the feedback I got from people people said they liked it and found it inspiring that I was getting out to these places and stuff. But people were saying how's your blood sugar always perfect like that. And I kind of realized was kind of annoying because it's not even true. So the next one or one of the reasons I did was when I was in Europe for four months, I just said well whatever it is, this is what it is. And I'm gonna go to the top of this hill in Budapest and take a video or picture and whatever it is when I get there that's the blood sugar but I'm still here and I'm trying to do my best with with my insulin and my food and exercise and everything and if it doesn't work, it doesn't work but I'm still here anyway.   Stacey Simms  19:46 I like those better because it's go right   Jeremy Larsen  19:49 just go right.   Jeremy Larsen  19:51 You can you can stay at home and have a blood sugar this 350 or you can be traveling through the Czech Republic now which is better.   Stacey Simms  19:58 What has surprised you With about traveling with diabetes and and living in Japan with diabetes, anything really surprised you?   Jeremy Larsen  20:05 While living here, the big difference between living here is how easy the healthcare system is. It's nothing like it is in America. And I remember we know when I was in America had insurance through my employer and all that, and the deductible and which doctor you can see and all that kind of stuff. None of that exists here. I pay monthly into the nationalized health surface health system, and I can go to any doctor, or they can write me a prescription, I can go to any pharmacy, everything's really like, the prices are all set. doctor visits are really cheap. And the insulin cost about the same as what it does in America. But it's just no worry. There's no health insurance worry.   Stacey Simms  20:43 It's fascinating, isn't it all the same supplies? I do have access to everything that you would have used in America.   Jeremy Larsen  20:49 Actually, somebody asked me today on Twitter, what kind of Insulet What kinds of insulin are popular here? And I didn't really know what to say cuz I only know what I use, which is human log and Lantus. Now, and those are actually manufactured for the Japanese market here, like my pins actually have are written in Japanese on the side. Oh, they're very, I mean, yeah, even if I go to a doctor, and then like a brand new doctor, and then they write a prescription and I go to the pharmacy next door, the pharmacy will probably have humalog and Lantus in the refrigerator there. And if not, they can get it within probably 1824 hours.   Stacey Simms  21:25 Have you ever been in a situation that you're traveling kind of led you to a difficult situation with diabetes, you have to forgotten a bag someplace?   Jeremy Larsen  21:37 Well, nothing like that nothing where I was just out of supplies and couldn't find any, because I'm so paranoid about it, that I always make sure something's gonna happen. I've like my longest trip so far was about 303 130, some days, but 11 months in Southeast Asia. And I took enough insulin with me for about maybe two or three months, so I had to buy it several times while I was on the road. And in those countries, like I was in, I ran out in Thailand. And I was in a small town in southern Thailand. And I thought, well, what am I going to do? And I went to the local like the prefecture or hospital, or whatever it was, and I talked to this doctor who spoke English for some reason. And she said, I said, I need a human log, just so you can't get human log here. You can get it. There's a private hospital over on the other edge of town, but it's whatever, like expensive was like $40, a pen or something like that for some reason. And I was really budget traveling, and I didn't have $40 for a pen. So she said, Well, you can buy this stuff called act rapid here. I said, What is it? She's Well, it's fast acting, it's probably good enough. And I said, Well, how much is it and she told me it was like dirt, dirt, dirt cheap. But it's a real kind of insulin. So I bought a bunch. And it was really cheap. And it was kind of a test. I said, if this works, okay, and if it doesn't work, I have to go home, back to Japan or something because I won't be able to continue this. I mean, if I can't find the insulin I need the trip is finished. And I have no problem with that. Because diabetes is priority number one. But it worked fine. And so I got lucky. So I had bought a bunch and I was good for another three or four months or something. And then I was in Cambodia. And I went to I was in the capital of Cambodia, Phnom Penh. And I needed some more insulin. And I knew in that region x rapid was most common. So I went to this pharmacy, I think it was like on August 31. Because they had pins, they had x rapid pins in the in the refrigerator, and to two boxes of five pins of 10 pins. So that's good for about three months or something. And I said, Great, I'll take them. And they said, Oh, and then I noticed the expiration date was that day, oh, these are expiring today. So I was kind of thinking he would go and go into the back and get some others, you know, right. And he me guy kind of looked at me. And he kind of lowered his voice and said, Would you take these for half price? And I said absolutely, I would. Again, it was just, I'll try it, you know, and those worked fine for the next three months. And just things like that. I've always, if I can't find what I need, I would cancel a trip. But that's only that's the closest it's come to happening. And that wasn't really a big problem. So I've been lucky or I just been careful.   Stacey Simms  24:26 I probably a little bit of both. I would think too. I mean, you know if you're packing that well, as you're traveling, and I think we also forget, diabetes is not an American experience. You can get flies around the world.   Jeremy Larsen  24:38 Right, right. Yeah, when I was crossing over from Cambodia and Vietnam, it was this strange little outpost of a border crossing and not many people used it and they were looking through my bags and stuff and they found a bunch of syringes and pens and stuff. And so what's all this and they didn't speak any English and I didn't speak any Vietnamese and it was kind of they were kind but they're they're friendly about it but there was obviously they weren't gonna let me through And finally I remembered I had a phrase book and I got it out and the word diabetes was in the phrase book. So I showed it to them showed him the Vietnamese version. And they all started like smiling going, Oh, okay. Okay. Okay. And they said, Well, you know, zipped up my bag and told me they told me to go ahead. Wow. So even even they were very, very suspicious. But as soon as they learned it was diabetes, they're like, fine, fine, fine. Go ahead.   Stacey Simms  25:22 That's great. Probably a better reaction to get from the TSA sometimes in this country.   Jeremy Larsen  25:27 But yes, hey, so   Stacey Simms  25:28 how I put you on the spot here. How do you say diabetes in Japanese?   Jeremy Larsen  25:33 diabetes is Tonio Bo, which means, I think it means urine sugar sickness. That's what they call it. Tonio Gill,   Stacey Simms  25:43 what's your advice for people who are worried about travel?   Jeremy Larsen  25:48 My advice is that almost all of the problems in the worry are psychological. And it has nothing to do with diabetes. I actually actually think to get a little philosophical about it for a second, I think diabetes is mostly a psychological condition. I mean, obviously, what it is, is an imbalance of sugar and glucose and insulin, yeah, take care of that, because you don't make your own insulin. But that's fairly simple. It doesn't always make sense. And like I checked my budget earlier today, and it was 360. I had no idea it was that I have no idea why. But it just happens. Like physically, it's easy to take care of, basically, you know, just balancing those two things, but all of the psychological worry, that's what takes a bigger toll. In some ways. Obviously, there are physical tools. But so when people are worried about doing anything, I understand the worry, because you're going to go to a strange place. You don't know what the food is, you don't know. Is there going to be like a refrigerator from insulin? Is there going to be what if I break my insulin pin? What How can I go to a clinic and buy a new one has all that work, but what I've found is that people will always help and there's no problem, there's not going to be any problems. People like health care as the same everywhere, no matter it might be good or bad quality, but the people behind it are the same everywhere. They want to help. And if they realize that you are if you can communicate somehow that you're diabetic, and you need this, you need that, they'll do something, something will work, you know. So I'd say just go, just don't worry about it. But you have to plan to make sure you have enough insulin and stuff if you don't feel like buying it overseas, but there's not much to really worry about. It's all in your head. That's kind of basically my advice. Diabetes is the same when you're in a little guesthouse in the middle of Laos, as it is when you're home, you still have to make sure that you had enough food and enough insulin and you have to check if you don't know and it doesn't really change when you're on the road.   Stacey Simms  27:39 What's next for you? You're in Japan right now. Are you planning any big trips are you going to stay there another four years,   Jeremy Larsen  27:46 not another four years.   Jeremy Larsen  27:49 Going back to Aiken   Jeremy Larsen  27:50 back to Aiken   Jeremy Larsen  27:53 would be an interesting change, I'd   Jeremy Larsen  27:54 love to visit Aiken. I don't know if I'm looking to move back to a   Stacey Simms  27:58 small town in South Carolina. I   Jeremy Larsen  28:00 should mention.   Jeremy Larsen  28:01 I just finished up a four month trip to Europe, which was a lot of fun kind of eastern and southern Central Europe. And then I was actually in the states for a couple months. And then I just came back here in April. So I'm kind of here. refilling my coffers. And teaching classes, you know, saving the next trip, which will probably I hope would start about a year from now. But I don't know Don't hold me to that. I would like to rent a car and just drive around the US for two or three months going to see the national parks.   Stacey Simms  28:33 Wouldn't that be great.   Jeremy Larsen  28:34 And I've seen some of them. And I've taken a few car trips across America with friends of mine, but I've missed a lot of like I saw the Grand Canyon, but I didn't see a lot of the great national parks Yosemite, I haven't seen Yellowstone, I haven't seen things like that. So I have a big list and have a big excel sheet with all of them. That would kind of be my next trip.   Stacey Simms  28:55 That sounds terrific. We did a small trip like that two years ago to the Grand Canyon and Bryce Canyon and Zion. And, um, we were really nervous about diabetes. And it worked out so well. And my takeaway from it has always been my son. We went on a mule ride on you know, we were we were all on the mules on in Bryce Canyon. And he was I want to say, seven or eight years old at the time. And I remember thinking, Okay, we're going to be in this mule for two to three hours. You know, what are we going to do? Go and logo and Hi, we weren't remote monitoring at the time. He wasn't even wearing a CGM. It worked out so well. We didn't worry about diabetes. We had a blast and the pictures from that trip. Were just incredible. And it was so much fun. So I love that idea of just realize that diabetes is the same whether you're in your house or you're on a mule in Bryce Canyon. It really is.   Jeremy Larsen  29:48 It's right.   Stacey Simms  29:49 Well, definitely keep in touch. This was really interesting. I'd love to talk to you again, especially if you wind up doing a trip to the States. That'd be great.   Jeremy Larsen  29:55 Yeah. Okay.   Stacey Simms  29:56 Gary, thank you so much for joining me.   Jeremy Larsen  29:58 Thank you very much. I enjoyed   Jeremy Larsen  30:05 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  30:11 Lots more information about Jeremy Larsen. You got to watch his YouTube channel. I didn't set up at Diabetes, Connections com. He also let me know that he's got a lot of videos from that park trip. He's in the process of uploading a lot of that stuff to YouTube. Apparently he's redone a lot of his social media and as many of us have since 2015. So that's getting uploaded. So please go ahead and check that out. And he said he has a few things up his sleeve for the next couple of months or years, you know, after Coronavirus passes in Japan, which if you go just as an aside, if you go to his website, and I watched a couple of the videos, it's been really interesting to see how Japan has handled Coronavirus. You know, of course, they have had far fewer cases in the US they handled the virus itself differently in terms of better masking and that kind of thing. But they have been slower on the vaccines. And Jeremy talks about the Japanese culture and kind of why that is they're really just getting the vaccines rolling out now several months after the US. It's just so interesting to get that perspective. Right. I mean, travel is the greatest thing you just learned so much. You opened your mind. I can't wait to travel. Alright, thank you so much for joining me a couple of really fun and interesting episodes coming up if I do say so myself. I'm not exactly sure which one I'm going to go with next week. Because as I'm speaking to you now, schedule is a bit up in the air but here's what's coming up. I have a roundtable on sleepaway camp. This is non diabetes sleepaway camp. So we're going to talk to two adults who went to this kind of Camp when they were kids to adults with type one and two parents. I'm one of the parents who have children with type one that they have sent to regular sleepaway camp and kind of how to do it and what you can expect that kind of thing. And we're also talking to the man who just set a record a brand new Feat. He ran from Disney to Disney. He ran from Disney Land in California to Disney World in Florida. I am still working out the logistics, but Don promised me months ago that we would talk so I'm hoping that will be the episode for next week. But that's really up to him and boy, if anybody deserves a rest and we can hop, it's him. Alright, thank you, as always to my editor John Bukenas fom audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.   Benny  32:29 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged

Note: In this episode I switch back and forth between using the Electro-Voice RE320 and the Electro-Voice RE20 microphones. And the big announcement is that I've decided to put lots of energy into the Podcast Production Community that I recently started on Locals, so come join the party. I'll be posting daily content on gear, software, production workflow, recording, editing, plugins, and whatever else applies to production. The community members are posting good stuff as well. FYI, the quality of the expertise in this group is extremely high - we'd love for you to be part of it.  How the community works: You are able to join free and view all the content (videos, audio, text posts) BUT only by becoming a "Supporter" are you able to comment on posts and post things yourself. On occasion I post exclusive content for Supporters only. NOTE: It's only $5 per month to become a Supporter. If you aren't able to become a "Supporter" of the group, definitely join the group (free) and watch/view all the content in the group. And there’s a bunch of podcasters on there already including Eric Hunley, Bryan Entzminger, Darrell Darnell, Bandrew Scott, Ross Brand, Roy Stegman, Heather Welch, Daniel Abendroth, the mighty Ed Sullivan, Leslie Martin, Paul you know who, Jason Sheesley, Jason Bryant, Carrie Caulfield Arick, John Bukenas etc etc etc. Here's the Podcast Production Community ---> https://podcastproduction.locals.com And here's a link/code for one free month of Supporter status over there: https://podcastproduction.locals.com/support/promo/PODCAST More on the RE320 vs. RE20 I own both these microphones and I like them very much. Which one do you think sounded better on my voice?...? Hmmm....? The audio in this episode is completely raw (unprocessed) but I did match the microphones' levels in post-production - *except for the end of the episode when I show you the difference in level between both raw recordings. Other Notes: If you ever have questions please reach out! The start date for the next PES semester is April 20, 2021 If you’d like to share this show with any of your podcaster friends, feel free to send them a message saying, “Btw, here’s a show about podcast audio production you may find helpful” with this link: https://podcastengineeringschool.com/subscribe/ Let me know if you have any questions or need any help with anything, ~Chris

Moira McCarthy and Stacey are back to answer your D-parenting questions! This time around, they're talking about a dad who’s a first responder and sees the emergency side of diabetes, advice for young adults with T1D getting their first jobs and questions about teens with diabetes traveling abroad. In our Innovations segment – a new glucagon and previous guest Bob Weisher launches his Invincible Kids app for teens. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities. By Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom, keeping you in control with an integrated system for diabetes management.   Announcer  0:22 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:28 This week, ask the D moms is back! Moira McCarthy joins me to answer your questions, including one about sending a teenwith type one on an international trip for a month   Moira McCarthy  0:41 You can’t go from constantly overseeing it for years and years and years to bang letting them go on something like this. And that's why you've got to kind of poke at it. And it's not as much for them as it is for us for parents because we have to get past our own eggs. And that's how you do it.   Stacey Simms  1:00 We also talk about a dad who's a first responder and sees the emergency side of diabetes advice for young adults getting their first jobs, and Moira shares a story that stopped her in her tracks, even after 24 years of her daughter's diabetes. In our innovation segment, a new glucagon option and former guest invincible kids takes a big step forward. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with type one more than 14 years ago as a toddler. My husband lives with type two. I don't have diabetes, I have a background in broadcasting. And that is how you get this podcast. If you are a careful, longtime listener, you have probably guessed that the teenager I was talking about in that tease there. The intro I do for every show is Benny. Yeah, my son is set to go to Israel for a month this summer. It's part of a camp program. I've been sending him to this camp since he was eight years old at age nine. He started going for a month. It's not a diabetes camp. But I took advantage of having more on the show to ask her for some advice. Because even though I let him go, you know, I am nervous about this whole thing. COVID aside, you know, this is a very, very big deal for me. He's super excited, and we'll talk about that in just a minute. With Moira A big thank you to JDRF Desert West. That's the chapter that now includes Nevada, Arizona and New Mexico I believe they had me out for a they had me on zoom. It's so easy to say they had me come by. I hope we get back to that soon. But I did this via zoom, we had a great time. They have an ongoing event called type one talk. And they're bringing in authors, they have an author come in talk about the book read a little bit answer questions. It was a great fun time. I have to admit it was a little difficult to stay up because I know I’m such a baby. But it was on pacific time and I’m on the east coast. And I mean, I'm awake. We did it at I believe it started at 830 my time, and we went on with 10 o'clock. But I mean I'm not in bed, but I'm definitely in pajamas. Usually by which made it even more fun because I think maybe I was a bit looser. You know, just it was more casual in a way then during office hours. But I really enjoyed that. And I got to say, you know, the world's worst diabetes mom had an amazing February and March. You know, the book came out in at the end of 2019. But thank you so much. If you are spreading the word or you've told friends about it, something happened this year, and it has sold more than definitely than I expected this year, but it's outselling some months right around lunch. So I'm very excited and I am working on the idea for Book Two. I'll keep you posted on that. But I'm always happy to talk to JDRF chapters, other groups, a mom group, you know, just to sit and chat. Just let me know. Moira and D mom advice coming up in just a moment. But first Diabetes Connections is brought to you by Dario health. One of the things that makes diabetes management difficult for us that really annoys me and Benny, isn’t actually the big picture stuff. It's all the little tasks adding up. I mean, are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers no more wondering about how you're doing with your blood sugar levels. Find out more go to my dario.com forward slash diabetes dash connections. My guest this week is my good friend and fellow D mom Moira McCarthy. She is an author, a writer and advocate and so much more. Her daughter Lauren was diagnosed at age six in 1997. And I started the Ask the D mom segment A couple of years ago here on the show. We love getting questions from you Moira and I, as you probably know, are very much aligned to philosophically when it comes to diabetes, which kind of makes sense because I learned an awful lot from her. She's one of my mentors, and I'm so thankful that I had her blog. Despite diabetes and her books to guide me early on in Benny's journey. I mean, even before I met more, I've told this story many times before I was a big fan. And when I finally got to meet her in 2015, we spoke on the same bill at JDRF. St. Louis, I was so excited, I was kind of intimidated to be speaking on the same bill as she was. And that's really how our friendship our in person real friendship started. I bring that up. Because while we're aligned, as I say, we also had our kids diagnosed at very different times in diabetes, tech availability, or even what insulins were available at the time. So you know, 1997, when Lauren was diagnosed, was really different from almost a decade later, 2006 when Betty was diagnosed, I mean, can you think that a kid diagnosed today when they leave the hospital quite often with an insulin pump and a Dexcom? Very different times. So I like that more. And I kind of overlap in that way and have a bit of a different perspective, just in our experiences, but some really good questions this time around. And as I said, I threw one in as well. Moira, welcome back. It's always great to talk to you. I feel like we do this seasonally. Did we talk last year during allergy season?   Moira McCarthy  6:19 It's funny, because when's the last time that we did a chat like this to share with everyone? It's been? It's been a hot minute, or Oh, it's   Stacey Simms  6:27 been since last fall? Probably before maybe right around Halloween? Yeah, I   Moira McCarthy  6:31 can't decide if time is passing really slowly or in the blink of an eye. I just don't even know anymore. But I feel like   Stacey Simms  6:39 yeah, this this year is flying by and it's spring, is it really spring by you? It's usually.   Moira McCarthy  6:44 It's horrible. But it's spring on the calendar. But that's okay.   Stacey Simms  6:49 Well, we had a bunch of really interesting questions this time around. And I thought of you I was in a JDRF discussion. This is a really neat event I did with the the chapter in Las Vegas and surrounding states. So it was a couple of days after I've been there a few times. So I hope to go in person one of these days. But it was like a book club discussion, which was really fun. So I read part of my book. And then we had a whole group discussion. And I got a really interesting question from one of the moms who was there, and I wanted to run it by you. This mom says she's pretty laid back, their son has type one, I want to say he is seven, but he might be a little bit older might be a tween, but the mom says she's pretty laid back really wants her kid to thrive with type one. But the father, her husband is a firefighter. He's a first responder, and he sees in his words, the worst of T1D. So he is very nervous that their son will have, you know, an unhealthy a bad outcome and all these words that he was using, and wants much more strict control, and really wants to get this message across to their son that you know, you've got to take care of yourself, where's the mom just really want to expose their son to the kinds of things that this firefighter is seeing? If all of that makes sense. What do you think about that?   Moira McCarthy  8:10 Well, so first of all, what they expose them to would very much depend on his age, and seven and a tween are very different. Right? So we'll just speak more generally, around it. Do our children need to understand the basics of type 1 diabetes, and why they do what they do? Absolutely. Why would you even a toddler, you, you must have done it with Benny that when you're giving them the shot, you say, you know, we're giving you this medicine so that now you can eat your food and it won't make you sick and things like that. And then as they get older, so you want them to understand it. But do you want to educate them in a fear factor kind of way? And to that? I would say no. Now, why is that? Well, that's because a number of reasons. First of all, children have very creative imaginations, and you can plant some really scary ideas in their head at a young age that may take forever for them to get out of their heads. Second, this gentleman, and thank you for his service, right sees the worst because that's his job to see the worst. If his job was to go visit everyone with diabetes every day, he probably wouldn't feel the way he felt. Does that make sense? Yeah. And so he's seeing these very rare, very frightening situations. So what I would say is, if there's any way that the mom and the dad can attend something together, whether it's virtual, or in person where they talk about the holistic approach to raising a child with diabetes, and we can you and I can talk about that a little bit right now for this mom and this dad. But as I've said to you many times, and as we all say to one another, we're not just raising controlled Diabetes, we're raising a full human being. And it's very important that a child grow up, secure, happy feeling cared for, not afraid of what may be around the corner, while at the same time having a basic understanding of why they might need to do what they would do. So if this child is seven, I would say there's absolutely no reason under any circumstance to talk about what that Father has seen, ever add to a seven year old. If this child is a tween 1112, I don't think it's the worst idea to maybe tell a story every once in a while. But I would also be careful of that. Because, again, you don't know if that person you're treating actually takes really good care of their diabetes, and is just in a bad situation you don't know, as an EMT, or a paramedic, paramedic, if there's an underlying illness that they may not know about, and they'll find out at the hospital or something. So, so even though you're there, you don't know the whole history. And I would just be careful around that. One of the things I will say is, I really do know, 1000s of families with someone who has type 1 diabetes in their family, and maybe five have had to call a paramedic, who I know, it's not out of the realm of possibility, but it's also not a probability. It's not it's way closer to never happening than it is to happening. And so based on that, I question whether you should build fear in a child to hope that they will take care of their diabetes. The other thing too is I know from raising my daughter, fear does not work in children. It's the same with everything, not just diabetes, they don't see down the road, they don't see danger, that part of them hasn't developed yet. I would say focus more on how he feels when he plays soccer, or he plays the tuba or whatever it is he does or he plays chess, or he reads, how does he feel them? That's what I would focus on. It's got to be so hard for that dad, though, with what he's seen.   Stacey Simms  12:08 Oh, yeah, yeah. Well, the way I answered it was, there's two parts to my answer. And the second part, I credited to you, I promise, because it's pure Moira. But the first thing I said was, we have to kind of understand that there are these issues of access, education, family support. And when, you know, from my experience with this podcast, my audience, the people who as you're listening, now, you are a very different and wonderful and kind of lucky bunch of people, because you are seeking out diabetes education, you now know where to get community support, if you don't have family support. And I do surveys of my audience all the time where these people have plenty of support, you know, they have a, they have community, they have friends, they have family, they have somebody to help them out. And I say all that because my guess and it's a guess. And this is not a value, state judgment, anything on people who call paramedics, we all need them when we need them. But my guess would be that the repeat people that this firefighter is seeing if that's indeed the case, are probably people who do not have the support and the setup that his son have. So it's not a fair comparison, in my opinion, of what his son may experience. And again, we have no idea what he's really seeing, right is a type two is a type one, does it really matter? Right Is this a Is this a father who may also see his son weaving without diabetes in every child that he takes care of?   Moira McCarthy  13:38 I was thinking that like I see a car accident, it must just be horrible. I mean, that have diabetes diagnosis is very traumatic to the parent. And it took me a long time to be comfortable is a weird word, but to be comfortable with it, you know, and if it's right in your face, like that, the poor man, but I would also say that you can go out and find the worst case scenario anytime with anything, and then dwell on that. Again, if it's put in your face every day, like this poor gentleman and his job, it's harder to look past, but he's gonna have to find a way to differentiate his child's diabetes from what he does on the road every day. And I just hope that he can, because I can't imagine how difficult it is to see that and then think about your own child.   Stacey Simms  14:29 And the second part of what I told this mom to try, as, and this is one of the things you've pulled out of your bag is write down what he is concerned about. And she should do the same. Anything she's concerned about about her husband overreacting and what it might do to their son, and he should write down. I'm not overreacting, this is what I see. And then bring it to the endocrinologist or use the patient portal just to talk to the endocrinologist without your child around especially a seven year old and see what the endo has to say. How many kids in your practice have called an ambulance three times in the last month? Or, you know, whatever he's really worried about? Or if this happens, does it mean that because we've talked about this, most of us kind of make up stuff? Because we don't know. And we haven't, we're afraid to ask.   Moira McCarthy  15:15 That's great advice.   Stacey Simms  15:17 Well, sure you gave it to me.   Moira McCarthy  15:20 But really, that is what I always did is just sort of went to the endo and said, This is what I'm worried about now. And then they would tell me why I didn't need to be worried. You have to trust your medical team to do that. And this, dad's probably going to have to think a little more than most of us have to because of what he's seen, you know, and then I know adults with type one who, when they're super low, prefer to call EMTs and have them come to their house and treat them and then leave without going to the hospital. I don't get it. But I know people who say they'd much rather do that than use glucagon,   Stacey Simms  15:53 but I'll try to follow up with them. I you know, I'm in touch with the chapter. So we'll kind of circle around and see if we can find out what happened there. But it is it that's a that was a unique one. When I saw that, I thought oh my goodness. You know, I definitely wanted to ask about it. We got another question. Heather says my son just started his first job. Congratulations. Should I have him give the employer a quick reference emergency form? Or is that not necessary?   Right back to our conversation in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen.  and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give Gvoke correctly. I am so glad to have it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk. Now back to my conversation with Moira. The question is from a parent asking whether her child needs an emergency diabetes form at work. And this is a young adult, this isn't you know, a 14 year old kid that she's driving to,   Moira McCarthy  17:22 you'd say of course, my son just got a job. So he's only 16. But I consider 16 old enough. So I can think that if you are old enough to have a job, even if it's babysitting for people, you are old enough to make that decision yourself and speak for yourself. I think parents should advise their children about what they think might be a good idea. But at the end of the day, that's up to the kid in the work situation. What my daughter would do is just kind of nonchalantly when she started, she worked at a country club catering and in the pro shop. And then she was a bank teller. And what she did is after she started just like you had meters then now I guess it'd be your CGM just pull it out and say, Oh, you know, you guys just so you know, I've type 1 diabetes. If you see me doing this, don't worry about it. If I need anything, I'll let you know. That's it.   Stacey Simms  18:12 That's funny, because that's what happened to Benny. He just got a job as a grocery store clerk, he's stocked shelves, is that what it's called? He stock shelves. You know, it didn't make a big deal about diabetes. I don't think he even told them before he started. And then when he was going a little bit on the low side, and he took out his pump where his CGM numbers are and said, Hey, I'm going low. I've type one, I just need to sit down for a minute, you know, I'll keep you posted. I'll let you know if I need anything. And it was he said it was really easy. And of course, I was thinking to myself, the worst amount that I am like, it didn't even occur to me to, like, fill out a form or let them know. I mean, he does take care of it. And I'm lucky that way. But I'm curious and I don't I'm not as familiar with the ins and outs. I want to say legally, but with adults starting these jobs, full time, things like that. Are there ways that they should be disclosing or anything they should be saying or do you think it really is just up to their comfort level? I guess I'm just thinking about, you know, American Diabetes Association guidelines, that kind of stuff.   Moira McCarthy  19:13 Yeah, it depends on the job. If you have a job that you're only allowed to like they give you a policy that says you may only eat and drink food during your break and your break is 15 minutes at the same time every day then you need to have a discussion with your boss and say Just so you know, I'm gonna have a tube of glucose tabs in my pocket and and I may look at my CGM and pop one in my mouth but that this is why and, and the rest of it. I think Maren always felt that like if she was at work and she felt like she was gonna throw up she wouldn't have had a form filed in case she's ever sick. So she just sort of treated it that way. Now as an adult working now, Lauren just goes about her day. You know, the people she works with all know she has diabetes because they work with her, you know, and it just Sort of this job now it actually was part of the interview process because she works in prescription drug pricing, you know, so they know but for a teenager, my opinion, I let Lauren make her choice and how she did it. And that's how she did it. I do think that the people you work for and you work with do need to know you have type 1 diabetes, they don't need to know what your basil is, or you know how to give glucagon or anything like that, but they need to know, right? Just for some weird reason, you know, for whatever they need to know. But I don't think you need to go deep into it. Unless it's a very unusual job that has really restricted than I know, like, for instance, cashiers in the front of supermarkets By the way, Benny's not a shelf, stocker. He is a manager of product traffic.   Unknown Speaker  20:48 Oh, yes.   Moira McCarthy  20:51 I'll let him know resume. But if you're a front cashier, in other words, that's one that you may have to say to your boss, hey, listen, I just need to keep a juice box here and something here. And if I feel low, I'll just eat if I need to stop, I'll, you know, I'll buzz you. And let's just let the other staff know. So they don't think I'm getting some special treatment or something like that.   Stacey Simms  21:11 Yeah, that makes a lot of sense. And I'll link up any kind of advice, legal stuff for people who really do, as you said, you have a job where they can't leave their post, that sort of thing. I assume people like that would probably know what to do at this point. But I'll link that up anyway, just for some good info there. And I'll tell Benny, that it sounds like he got a promotion, he can tell me more about bananas. And it,   Moira McCarthy  21:34 you know how much things are stocked. And when they're stuck.   Stacey Simms  21:37 It's been really fun. And the timing has been really good. Just as a quick aside, he really just started and we let him because of the vaccines coming out, frankly. So yeah, when he got the job, we knew there was going to be a training period, and he wasn't gonna be in the store right away in North Carolina, it just worked out so wonderfully, that they opened up to grocery store workers. So as soon as he got the job, he was able to get the vaccine. And you know, even though he's not on the store floor all the time, I am certainly much more comfortable. He is now had both, and   Moira McCarthy  22:08 I would want that even my kid didn't have diabetes, just because yeah, goes to the supermarket. You know,   Stacey Simms  22:13 yeah, I'm thrilled. And he's so happy. It's a it's a nice thing. You know, when your kid gets really their first job,   Moira McCarthy  22:19 it's good for them to practice to how to be able to just sort of deal with diabetes on the run while they're working. Do you know what I mean? Like, I never had a problem with Warren thinking, gee, I feel low and popping a glucose tab into our mouth or taking a bite of something and not being like I have to stop everything. Because I feel low. Some people do have to, and they'd have to deal with it differently. But for her, she knew she was going to land in a high pressure job where she's running around all the time. And certainly she has. So now she's glad that she most of the time can just go with the flow with it.   Stacey Simms  22:54 You just got to make sure you just eat a lot of bananas and let them know if he's low.   Unknown Speaker  22:59 Just tell him to the whole banana don't take bites.   Stacey Simms  23:05 Okay, so I actually have a question for you. All right. This is because as we're focusing here on Benny some more this summer, COVID permitting, he is planning to go with his summer camp. This is the camp where he's gone every summer since he was eight years old for a month. And at this age, they go for a month to Israel. So awesome.   Unknown Speaker  23:27 I know. I'm so excited for him. I'm crossing my fingers for Benny. Right. Oh,   Stacey Simms  23:32 so again, COVID permitting, we have been talking to the group, this is not their first child was type 1 diabetes, who will be going he's pretty easy going. But we are going back and forth on what would I like? What would they like my biggest concerns that we are addressing? And I don't know the answer to really is just about how much does he need to take with him every day? I don't because they're on the move the entire time. I don't know if there's like a home base where they'll have all the stuff or if he needs to take everything every day. But that's neither here nor there. My question is for something like that, you know, knowing that everybody does things differently. But would you have any kind of non negotiables for a teenager traveling with a group abroad or somewhere far away for a whole month?   Moira McCarthy  24:19 So when Lauren only went for two weeks when she was a cig go to Israeli that she went to Washington DC, which is the first time she went really far away for two weeks, and there was no nurse or anything. We talked to the endocrinology team, and she came up with a plan that she felt she could be comfortable with. And the endocrinology team was okay with that. So I said that's fine. And part of her plan was I mean, there was no share them. But part of her plan was she did not have to report numbers to me through the day and it worked out fine. I mean, I don't know what her blood sugar's were when she was there, but I know she came home and had a great time. The thing that I could say let's go to the extreme and then go backwards from that. So let us you're not negotiable, as you have to see as numbers on your phone all the time. We've talked about this before, you don't know what he's doing, you don't know what the temperature is, you don't know what he ate for breakfast that day, it's only going to get in the way of the experience, if you want to manage it. And I know you don't. But if you wanted to manage his diabetes remotely from America while he was there, it would be crazy for both of you. And he doesn't need that. So I would say that pick a time every day, that would work for him, that isn't too awful for you, your time but if there's a time, that sort of works, maybe he could check in at that time every day. And if they're in the middle of something, you can just have a phrase that he sends you to say, super busy. Everything's great. Love you. Sure I can talk tomorrow, you know what I mean? Or something like that? Because that would just make you feel that the thing about this that I think is super good is his camp friends are going with him, right? Absolutely. Yeah. He's in an environment where everybody already knows and supports everything he needs. So it's almost like you're taking the camp, that you work so hard to help him be comfortable with me he in the camp works so hard with and just moving it to Israel for a month. And that makes it kind of extra good. Right? Definitely everyone around him if he was going alone, and he hadn't met anyone, and it was all new. Maybe I'd have some other suggestions. But given that, and I think you can do it, Stacy, I think you can let them go. And you know what, this will be great practice for college.   Stacey Simms  26:39 Well, we I will be calling you every day, we actually have one non negotiable that we have always had for Canada. And that is, and it is not actually up to him. It's up to the people with him. And that is if he throws up more than once in 24 hours. I get a phone call.   Moira McCarthy  26:56 Oh, absolutely. I wasn't even thinking of sickness. Yes. Right. Right. That's I know you were thinking Oh, like with my kid without diabetes. Oh, good point. I   Stacey Simms  27:05 was always thinking that, you know, we're really fortunate. I'm going to knock wood or something that you know, Penny doesn't get ketones very easily. Now, I've just jinxed myself.   Moira McCarthy  27:13 All right, good lord.   Stacey Simms  27:15 I'll say a Kenahora, too. But I don't know why I said that. But but to illustrate the point that I've always felt that that's the biggest danger when I send him away. It's just camp is dehydration. People not recognizing high blood sugars, you know, having an issue like that. And I figured that's something to look out for. So that's my really my only non negotiable. The other thing that he is asked because I asked, you know, he made he made the plan more he made the plan for this that we're proposing   Unknown Speaker  27:43 grasshoppers   Stacey Simms  27:45 is, he said, he's probably gonna forget stuff, if he's got a bag that he's got to be repacking every couple of days. So the call that you mentioned that daily check in, he wants it to just be a photo of his backpack.   Unknown Speaker  27:57 Oh, that's brilliant.   Stacey Simms  27:58 And just say, Hey, mom, my stuff is here and knowing that he has to text me about it every day. And I think we'll do it before he goes to bed because it is a seven hour difference. Yeah, he first proposed Why don't we do it at breakfast every day? And I'm like, because   Moira McCarthy  28:10 it will not be breakfast time here. That's right. You know, what you might want to think about is how and you can do this now? How can he scaled back what he needs to carry every day when they go up? What can stay in his suitcase? Like if you could get a pen with some rapid acting insulin? Yeah. Then if his pump site goes bad, even if he's gone for the whole day, he doesn't need a site change and stuff like that, unless he really wants   Unknown Speaker  28:38 No, no, that's a good point. I think he'd be into that.   Moira McCarthy  28:40 Yeah, like, minimize what he needs to carry during the day, and then keep the other things there. And they may also if they're staying in the same vehicle, that's bringing them around to places you may be able to have him tuck a little bag into like the trunk of the bus or whatever, like ask the bus driver, can you just put this somewhere and have like, a couple sites in it or something?   Unknown Speaker  29:06 Give us a gift?   Unknown Speaker  29:06 They use the same? Yeah, yeah, we'll   Stacey Simms  29:08 find out. All right, I'll work back I like that I   Moira McCarthy  29:11 left. Those are both reasonable. Both reason things, you know, and that's super cool that he's thinking ahead about and understands what he might, you know, who doesn't forget things, I pull out the driver three times and pull back and now my sunglasses Oh, my wallet.   Stacey Simms  29:26 I had to come back into my house. I was running a quick errand. And I had forgotten one of the errand had a package in the house to send back so it happens all the time.   Moira McCarthy  29:34 So I think something for people who are listening to think about if you have a young child, and you're thinking, Oh, I'll never be able to do that. This is why as they're growing, it's really good practice to give them age appropriate freedom, whether it's play in the backyard on the swing set while you're not out there, you know, or ride their bike around the block with their friend at the appropriate age. I'm saying And as you let these things happen, you work your way up to sending your kids is,   Unknown Speaker  30:07 you know what I'm saying?   Moira McCarthy  30:10 Go from constantly overseeing it for years and years and years to bang, letting them go on something like this. And that's why you've got to kind of poke at it. And it's not as much for them as it is for us parents, because we have to get past our own Nxd. And that's how you do it. So you've done that. And now, Ben is going to reap the rewards of your being willing to put aside your fear for him so many times over all these years. Yeah, you. Well, thank   Stacey Simms  30:37 you more. And I'm glad you said it that way. Because one of the interesting statements that people make to me, and I know you get it, too, as well. Wow, I could never do that. Because I would worry, as though I'm not right. All kidding aside, the first couple years, I sent him to this camp, I would wake up at four o'clock in the morning, the first week or two that he was there. And I would wake up thinking that's it. He this was the stupidest thing I ever did. This is terrible. What was I thinking? And he's fine. Right. And so it was, it's our fear. And it's, it's still there. You've heard me kind of groaning over here about going and making all these noises. I am nervous, but I know I have to let him go. So it's it is about it really is about facing those fears. And little by little, I will never forget the first time I let him go play in the snow.   Moira McCarthy  31:24 That was terrifying. Oh, God, everybody goes low in the snow. So the way I always say it, and I know some people think it's hokey, but I don't care. I'm a hockey person. So whatever is, in my opinion, the most loving thing a parent can do is to set aside their own fears on behalf of their child's success and happiness. Yeah, within reason. You know, if Ben, he wanted to try lighting a barn on fire, I'd be like, check your blood sugar first. Just kidding. But you know what I'm saying? Yes,   Stacey Simms  31:54 you got it, you just got to do it. And it's, it feels really hard. And it's scary. But when you start to get to the other side of it, it's wonderful, right? It's what it is wonderful it is. I know that sending him to this camp and diabetes camp was great and helped him in different ways. But sending him to this camp, I think has been the seminal experience of his childhood, it has given him a gift of independence, friends, confidence, troubleshooting, you know, crazy things have happened. And they don't necessarily call me because he manages it with the help of the people that are there.   Moira McCarthy  32:33 And think of how much easier it would have been for you to just say that you can't do that. I know your sister went but you can't because you have diabetes, and instead of him moving toward this independent, funny, awesome young adult who's gonna thrive in life, he'd be not doing the things he wants to do, because he never would have experience knowing that he can, right. Yeah, good for you.   Stacey Simms  33:00 Oh, I'm only I'm only quiet because I'm very superstitious. Moira, and I know it's silly. But I worry, we have to move on from saying nice things about Benny.   Moira McCarthy  33:10 I have a friend whose daughter went to South Africa on an exchange program and had type 1 diabetes. And when she was there very far away from her parents, she had to have her appendix out and it was fine. Everything was fine. Her parents didn't get on a plane and fly one of the adults who oversaw the thing stayed with her. The hospital knew type 1 diabetes, everything was fine. Wow.   Stacey Simms  33:34 Okay. All right. I'm gonna start wrapping us up here, Moira, but before I do, you posted something really interesting the other day and I want to ask you about it you spotted? Well, I'll let you tell the story. But you spotted an adult who looked like she needed help with a low blood sugar. So tell me about what happened.   Moira McCarthy  33:51 So it's really strange. I've been swimming a lot. And I go to deep water exercise class. And so in deep water, exercise class, you you're exercising, but you're kind of looking around. And this pool is huge at my club and way, way, way over the other side, in the shallow end, where they do physical therapy and little kids swimming lessons and stuff. Just on the corner, my eyes saw this woman and it was like, she looks kind of wildly funny, you know. And then I saw who I realized is the physical therapy instructor go over and kind of take her by the shoulders and bring her and sit her down on the step in the pool in the water. And I thought I don't know why she just had the book. I thought she's having a low blood sugar. And then I saw the club manager come in with a can of juice and she opened it up stick a straw on it and they were handing it to her and I thought oh, that's what it is. It's a low blood sugar. But as I watched the woman struggling with it, and clearly wishing that it wasn't happening, she wasn't showing that visibly and some of it I may have just been projecting, you know, but I watched it and and I didn't go over to offer help because I was so far away and I I had feeling that this woman just didn't want attention, but she needed attention. And what struck me as I watched it and thought about it was, I had, you know, it's been 24 years since Lauren was diagnosed, my family is raised millions of dollars and we're not wealthy people. I do the ride every year, I used to do the walks, you know, I speak at places, and sometimes you just feel like, Lauren seems like she's doing really well, maybe, maybe I should move on. And I don't ever really feel that way. But just sometimes you're tired, you know. And when I watched her, I thought, I have let myself forget that even though my daughter is down in Washington, DC with an incredible job, thriving career, thriving life, that's her reality. You know, it's easy for me to forget that because it's not my body. And it's not my mind, and it's not my diabetes. But it was a stark reminder to me that I will never regret raising my daughter to be tough about this and just live her life and not let it stop her from what she's doing. But I need to remember that raising her to do that doesn't mean that it's easy, right?   Unknown Speaker  36:16 Yeah. Oh,   Moira McCarthy  36:17 I feel renewed. I feel like I can't stop. I have to keep trying because it doesn't go away. And I guess the way that I said it a long time ago that I'm remembering right now is my daughter's fine, but this is not okay. And I think watching that poor woman, not wanting to be getting the attention not wanting to be low trying to get things going get when in my head. I'm like, No, you need protein. Diabetes mom, we found out in my in my exercise group, and she was to glaze over and I'm like,   Stacey Simms  36:55 well over that. Peanut Butter crackers in your bathing suit.   Moira McCarthy  36:59 I think that watching it was sort of a gift to me because it reminded me to respect the disease and to keep doing everything I can to make it better for all those people like that woman and like my daughter and like Benny and like everybody else, right? Yeah. Yeah.   Stacey Simms  37:17 I'm so glad you shared that. It's just you know, those reminders are so important along the way. As you know, as you said, Lauren is an adult she's not at home. It's wild to think about I still can't believe Benny's driving. 16 It's, I know we only got a couple more years before college.   Moira McCarthy  37:34 Yeah, Lauren's moving into her own apartment she's lived with her old college roommate said she got out of college. Oh, wow. Next week, she will be living completely alone for the first time in her life. And she's very excited about it. So it is   Stacey Simms  37:49 good for her. And I'm sure she'll have the the juice and the crackers with protein. You need a protein? Well, normally, this is where we would say Where are you going? Where are you speaking, but we're getting there. We're getting there. And later this year, perhaps but it's I think it's still fun. I know really sick of virtual, but I gotta say I love the connection. And I'm doing something really fun with my local chapter, which is now a couple of states my local jdrf chapter. And that is later on in April, and I'll be posting about this on social. They're doing like a spirit week. It's a very clever, fun idea that every day is a little different. And I am hosting a big trivia game at the end of it. And I'm very excited. It's all gonna be diabetes trivia, but nothing, you know, nothing stodgy or boring. And I'm really excited to do this and I hope I get to do it for more chapters.   Moira McCarthy  38:41 That's a great idea. That'll be a lot of fun today and I help tape the upcoming virtual gala for my chapter in new languages now the Greater New England chapter so I'll be speaking a little in that but mostly that night will be about martinis from home and fitting perfect titles and stuff like that. But um,   Stacey Simms  39:01 you have Martini earrings, or did I make that up?   Moira McCarthy  39:04 You make that up that I may have had them and I don't remember either. You know, me and my whimsical jewelry?   Stacey Simms  39:10 No, I know what it was when we did last summer we did Hollywood Squares for friends for life. And you had a martini but you   Moira McCarthy  39:18 had I was acting like Joe and morally but it was water just so you have a martini at 9am never   Unknown Speaker  39:30 never before 1030   Stacey Simms  39:31 see I'm just a I'm just a frustrated game show host one of these days maybe I'll get to do my dream career. I'll digital and runaway to do card sharks.   Moira McCarthy  39:42 Dr. Oz can do. I don't see why you can't move Don't get me started.   Stacey Simms  39:46 Well worth Thank you so much. It's always so much fun to to check in and I appreciate you answering one of my questions this time around.   Moira McCarthy  39:56 It's the first time I've ever answered a question for you right   Unknown Speaker  39:59 ah   Moira McCarthy  40:00 It's good to talk to you again. Stacey. We'll do it again soon.   Announcer  40:09 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  40:14 As always, I will link up Moira’s blog and more information, how you can find her books and all of that good stuff. And I should mention here, you know, we talked about camp a lot and how great non diabetes camp can be for your kids. I am taping an episode. I hope to have it out next week, but if not, it'll be out the following week. I want to be quick on this because camp is coming up or at least you know, Camp registrations. If you if you're doing sleepaway camp, they may have already closed but I want to talk about camp. So I'm working on an episode or roundtable with parents who have sent their children like I did to non diabetes, sleepaway camp, and adults who went to non diabetes sleepaway camp as kids so we can get some best practices in and more of those non negotiables, like I mentioned in my chat with Moira. And that should be out. Like I said, I really hope next week, but if not the week after that, all right innovations coming up, we're going to talk about a new option for glucagon. And a new step forward for some folks that we've talked to previously here on the show. But first Diabetes Connections is brought to you by Dexcom. Dexcom has a diabetes management software called Clarity. Do you use this for a very long time, I mean, longer than I'd like to admit, I thought it was something that just our endo could use. But you know, it's really helpful. And now I actually have it on my phone, you can use it on both the desktop or as an app, it's an easy way to keep track of the big picture. I find I use it when we're adjusting things, you know, which I felt was not stopped there for a while. But at age 16 Benny is kind of leveling out on growth and changing basil rates, at least for now. And Clarity really helps us see longer term trends. The overlay reports help context about his glucose levels and patterns. And when you share the reports with your care team, it's easy for them to get a great idea of what's going on and how they can better help. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us find out more go to Diabetes connections.com and click on the Dexcom logo.   In our innovations segment this week, the US FDA has approved a new glucagon option they have approved Zegalogue. I hope I'm saying that correctly, is an auto injector and a prefilled syringe. And it is pretty amazing that we went for so long, I mean pretty much until a year or two ago with one option. And now we have three. So Zegalogue joins Baqsimi the nasal glucagon and the Gvoke Hypopen which is a sponsor of this program, you heard me talking about them earlier. Zegalogue will be available in the US later this year in June for ages six and older diabetes mine has a terrific article as they always do on Zegalogue with all the information, although not a Pronunciation Guide couldn't find that anywhere. But apparently they had initially thought to launch this as brand name hypo pal, but they dropped the name I'm my guess is that it was too close to hypo pen, you know the Gvoke Hypopen from Xeris. And, you know, I wonder if I'm not only marketing, but there were other concerns about that. This round of glucagon is also being used, interestingly, for the investigative clinical studies with beta bionics. That's the islet pump, the dual chambered insulin glucagon pump from Ed Damiano that we have talked about for a very long time here, but this is the brand of glucagon that they have been using. That is not to say that they couldn't use another one. So the next time we talk to the iLet folks, and I've been working on that we've been going back and forth on scheduling and the like, but we'll get it and I will definitely ask them about this. It's also worth noting that Zealand, the company behind this, if I haven't mentioned them yet, that Zealand and Xeris the hypo pen folks are both studying a mini dose version. This would be small doses of glucagon, where you're trending lower, you don't need the emergency. A lot of parents use this for stomach bugs. Maybe adults too. I'm more plugged into the parenting side of things. I know insulin camps have done this so many glucagon is a popular off label use. It's definitely not FDA approved. But these two companies are now already studying how they could launch a mini dose version probably a couple of years away. interesting to think about. I want to bring you up to date on another story we've been following last August we talked about which year from invincible. This was a website an app to help caregivers to help schools to help nurses and teachers and I guess what you'd call non healthcare personnel. You know, the the front desk Secretary that's who was in charge of any diabetes for many times when there was no we had no full time school nurses elementary school, how to teach all these people how to better support their students. Bob was diagnosed with type one when he was 18 years old. He said he was totally unprepared to deal with everything and he built invincible, he says to make it easier for kids to grow up with type one. And he just launched a new app. And it is fourteens invincible helps teens living with type one, build independence and have fun doing it. I have not taken a look at this, I apologize, I will see if any will take a swing through it. But we put it in the Facebook group if you'd like to take a look. And I love what he's doing here. Teens are tough man. I'm interested to see what the reaction is on this. What he does have on his side is that he has taken into consideration feedback, input, all that stuff from actual real teams. And you can see some of that and some of their feedback on the website. So this is not just somebody kind of coming into the community and thinking they know what to do. This is someone from within the community who has a lot of experience that has taken a lot of time to ask the right questions, and to admit what they don't know. So I'm excited to see what happens with invincible and Bob, I wish you all the best. Hey, next week, we are back to good news. I need your Tell me something good stuff, send it into Stacey at Diabetes connections.com. post it in the Facebook group or just DM me on social media. I'll be asking because I love to share your good news stories. Stacey Simms  46:12 Before I let you go a couple of things to look forward to in the next couple of weeks. I mentioned the trivia I'm doing for the JDRF chapter here in Charlotte. I guess it's now the Carolinas chapter. And I'm really excited to do that. I am just a frustrated game show host as you know if you've listened to some of the silly episodes we've done over the years. I love this my college radio station group, which sounds a little weird, but we have been doing trivia once a month since I don't know since the pandemic started maybe since last March. That's a really tight knit group. We have a reunion every year. And it's just so much fun. I am so bad at that trivia because it's all like 90s music. It's it wasn't a news radio station. Although it did have news. It was a hot AC pop station, adult contemporary music for those of you not up on the radio lingo. And I was there in the late 80s, early 90s. But it's just really fun. Anyway, long story short, I'm doing a modeling my trivia over that good time I have with them every month and it's going to be a lot of fun. It's not going to be scientific diabetes questions. So if you can join me for that if you're in our local area. If you think that sounds fun, and you'd like me to come to your chapter or group, I will be more than happy to do this for you. And we'll have a lot of fun. All right, thank you, as always to my editor John Bukenas from audio editing solutions. Thank you for listening. I'll be back in just a couple of days with a classic episode, so I hope you can listen then. Until then be kind to yourself.   Benny  47:38 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged

I overview 9 recent Daily Goody‘s from Nov. 13 - Dec. 2 (see list below). You can sign up to receive Daily Goody’s in your email every day or a weekly roundup. Sign up here. Daily Goody posts that I discussed in this episode: Earning a Lot Being a Professional Podcast Editor, Engineer and Producer EQ’ing is a Skill Apollo Solo Set up Your Microphone To Point Away From Any Sources of Noise Black Box Analog Design HG-2 Podcast Participants Trailing off at the End of Sentences The World Thanks You for Caring About Audio Quality! Recordings Riddled With Random Clicks? Repair Assistant in iZotope RX Be sure to check out the Focusrite Scarlett series of audio interfaces, the world’s best-selling USB interface range with over 3 million units sold worldwide. Choose from 6 different interfaces with 1, 2, 4, or 8 microphone inputs. Works with the recording software you’re already using and works with any type of XLR microphone. New unique Air feature adds brightness and presence to your voice. Thanks to Focusrite for sponsoring this episode! Other Notes: If you ever have questions please reach out! The start date for the next PES semester is April 20, 2021 I started a community on Locals.com called Podcast Production and it's awesome! I’ll be publishing short videos where I screen present various production processes including recording, cleanup, mixing tricks, plugins, and other tips, as well as personal messages from me pertaining to the business of podcast production. And there’s a bunch of podcasters on there already including Eric Hunley, Bryan Entzminger, Mike Wilkerson, Darrell Darnell, Bandrew Scott, Ross Brand, Roy Stegman, Heather Welch, Daniel Abendroth, the mighty Ed Sullivan, Leslie Martin, Paul you know who, Jason Sheesley, Jason Bryant, Carrie Caulfield Arick, John Bukenas. If you’d like to share this show with any of your podcaster friends, feel free to send them a message saying, “Btw, here’s a show about podcast audio production you may find helpful” with this link: https://podcastengineeringschool.com/subscribe/ Comment below with any questions!

The very first treatment to prevent type 1 diabetes for any length of time is in front of the FDA right now. Teplizumab has been show to prevent the onset of type 1 diabetes in people shown to be at high risk of developing it. Stacey talks to Dr. Henry Anhalt of Provention, the company behind the filing. Dr. Anhalt is a pediatric endocrinologist and has a lot to say about what this would mean to his patients. Listen to our previous episodes on Teplizumab In Innovations, a round table on insulin pricing with Congresswoman Katie Porter. It didn't have her famous white board, but participants pulled no punches. Watch the full panel here:  This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription:  Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels, increase your possibilities by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:21 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:27 This week, the first treatment to prevent type 1 diabetes for any length of time is in front of the FDA right now. We're going to talk about the clinical stuff. But there's a lot of emotion wrapped up in this development as well.   Dr. Henry Anhalt  0:40 I was trained to make people who have type 1 diabetes feel that they're never doing a good enough job, that they're at risk of developing all these complications. And you know, when you get to the point in your career, you realize that not only did that not help hurt, and then really being in a position to hopefully be able to make a fundamental difference and how that goes down. It's really hard to articulate, I have to say,   Stacey Simms  1:05 That's Dr. Henry Anhalt of Provention, the company behind Teplizumab. He's also a pediatric endocrinologist, we'll talk about Teplizumab what is in front of the FDA and why this treatment is so promising. In innovations. A round table on insulin pricing with Congresswoman Katey Porter didn't have a whiteboard as She's famous for, but pulled no punches. You're gonna want to hear this. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am always so glad to have you here. As you know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son, Benny was diagnosed with type one right before he turned two, back in 2006. My husband lives with type two diabetes, I don't have diabetes, but I have a background in broadcasting. And that is how you get the podcast. We are coming up on year six of the show. And I gotta tell you, I don't get I don't get too excited about breakthroughs or treatments anymore, because we've covered a lot of stuff that frankly hasn't panned out the way we had all hoped. But this is a little bit different. Because Teplizumab is a drug that has already been shown to prevent type 1 diabetes for three years. And for some people, they are coming up on four years. What does that mean? How do we know it's preventing it? Why is it so exciting? And you know, could this mean a breakthrough for everyone with type one, there's a lot to unpack here. So we'll get to that in just a little bit. But we've talked about Teplizaumab before with the folks from trial net, I'll link up this previous episodes at Diabetes connections.com. There's always an episode homepage for each and every episode, which more recently will have the transcription. But for every episode has important links and more information for you. quick heads up. If you are listening as this episode goes live tonight, Tuesday, I will be with a JDRF with a couple of chapters. Or maybe it's just one chapter now things have moved around a lot for JDRF. But I'll be with the Nevada, Arizona and New Mexico chapters tonight, talking about the world's worst diabetes mom, we're going to have a fun discussion about the book. And if you are in one of those chapters, you're going to get the paperback for free. If you're not in one of those chapters come along. Anyway, I've got some audio books to give away. It's always just fun to talk to you. I'll be reading from the book but having a discussion as well type one talk, it's different times because of the different states and because of where I am. So it's 530 in Nevada and Arizona, and 630 in New Mexico, it will be 830 here in Charlotte, North Carolina, I may be in my pajamas, but I hope you can join me for that. And again, I'll put a link and I've got that out on my social. I've been talking about that on social media for a couple of days. I've mentioned a couple of times this year that we're focusing on technology. And a lot of that is because 2021 is going to see a lot of FDA approvals, things have been backed up because of COVID. Um, so this year, and next year, I think we're going to see many things kind of bunched up. But some of that technology isn't mechanical, right? It's medical or what we would think of more as biological perhaps. And that's what we're talking about today. But first Diabetes Connections is brought to you by Dario health. And over the years. I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's what I love partnering with people who take the load off on things like ordering supplies, so I can really just focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door one on one coaching so you can meet your milestones, weekly insights into your trends, with suggestions on how to succeed. Get the diabetes management plan that works with you and for you. Darrius published study Demonstrate high impact clinical results, find out more go to my dario.com forward slash diabetes dash connections.   My guest this week is the executive director of medical affairs for Provention Bio. He's also a pediatric endocrinologist and Dr. Henry Anhalt is also very involved with Camp Nejeda. He's on the board there. I believe he was the medical director at one point, but we have spoken to Dr. Anhalt before in that capacity. My cousin goes to camp there he did growing up, I will link back on our episode about camp with Dr. Anhalt because it's a really good one. And especially if you're thinking about diabetes camp, if your local campus happening this summer in person, that's a good one to listen to as well. Provention is a biopharmaceutical company dedicated to autoimmune disease. And they are applying for what's called a biologics license application for to please him up for the delay or prevention of type 1 diabetes in at risk individuals that is in front of the FDA right now. There is a gold date here that the FDA has assigned to them of July 2. So we shall see what happens between now and then. But there's an awful lot to talk about unexplained. Here's my discussion with Dr. Henry Anhalt.Thank you so much for joining me and welcome back to Diabetes Connections, it's good to talk to you again.   Dr. Henry Anhalt  6:21 Likewise, Stacey, it's a delight to be back with you again.   Stacey Simms  6:25 Well, I'm so interested in this news, which you know, it's hard to get excited after all this time for me. But this is exciting news. But let's kind of set the stage. If I could talk to me a little bit to just start off here. My listeners are familiar with T one detect the program that JDRF came on the show and talked about in in late December about a new screening initiative and prevention is the company that is I guess, you know, doing the heavy lifting here and doing the work to screen people. Can you talk a little bit about the importance of this project?   Dr. Henry Anhalt  7:00 Well, Stacy, the first thing I wanted to do is to point out that in addition to the T one detect program, we have the type one tested.com website, which will also give people who are going to that website, additional information about screening, it's important that we take a shift in how it is that we look at type 1 diabetes. And as we all know, mostly everyone's experience. And certainly, that's been the case with my patients as a pediatric endocrinologist, they present and they come to attention when they've been having symptoms, when they're not feeling well, when they are noticed to be losing weight. And a parent says, gee, something's wrong, and they go to a doctor and oftentimes are going from one doctor to another until unfortunately, kids and adults are getting sicker and sicker and then ultimately end up in an ICU setting. That's what we used to think about as type 1 diabetes. But we now know that type 1 diabetes is really in three stages, we know it's an autoimmune disease. But the three stages are really important to highlight, because the first stage is when someone has two antibodies that are directed at the pancreas. And those two antibodies are amongst a number of antibodies. But if you have two or more, you have stage one diabetes, even in the absence of having any symptoms or abnormal blood sugars. And we'll come back to that in just a second. Stage Two is when you have those antibodies or more, and you'll have some abnormal blood sugars, but not high enough to either have symptoms, or for anybody to even recognize. And then stage three is, as I mentioned a moment ago, when typically people have symptoms and they end up sick unfortunately, and seeking medical attention. We won't know whether or not someone is in stage one, stage two or stage three, unless they do things like you just suggested and participate in the T one detect program or have their antibodies tested so that they can identify and understand where they are along that continuum. And so we now classify type 1 diabetes as soon as you have two more antibodies, but even in the absence of having abnormal blood sugar, so it's important because as therapies become more and more available, and we know that there are a whole bunch that are now coming along, some of them are pending approval. So for example, Teplizumab which is before the FDA right now. And we hope that the FDA will look at the body of evidence and the safety and the efficacy. And we currently are targeted to have an approval date in the first week of July. But it's also important to realize that there are lots of other medications that are soon to follow, that may also be of use to people who are along this continuum. for us and for the people that we care about. In the type one community, the ability for a drug like Teplizumab provided that the FDA looks at the data and says, yep, we believe it's safe and effective to prevent people from progressing from stage two to stage three. Without that, we won't know who would be a good candidate for that kind of intervention.   Stacey Simms  10:58 I always get a little confused. And I know that for somebody like me, who's a lay person, it seems like we're early on in the research. But the question I always have about the antibodies is I remember years ago with trial net, and they would say things to us like, well, years ago for me when I was learning about trial that they would explain it like, well, kids usually get tested more often than adults, because things can change with children. If somebody has the antibodies, do they always develop the symptoms of type 1 diabetes? Or do we not know that yet,   Dr. Henry Anhalt  11:28 the uptake of testing or the routine screening for people at risk has not been adopted widely. And that's important to highlight. And that's why the JDRF is in the middle of this educational campaign is because the fact is that for all intents and purposes, our colleagues that pediatric endocrinology adult endocrinologist are not thinking about getting antibodies, and certainly in children who you would expect, are at greatest risk. Those who have a first degree relative with type 1 diabetes, a sibling or a parent where we know that their risk of developing type 1 diabetes is 15 fold greater than the general population that it would be more widely adopted. But that's unfortunately not the case. And in adults, are point people don't think so one of the challenges with adults who ultimately develop type 1 diabetes is that the family practice dogs or the endocrinologists who may be are not involved, likely not to be involved, because they are in seeing people who are adults who develop diabetes until their 50s, or maybe their 40s. And they're not thinking about type 1 diabetes, the greater challenge with adults is around the assumption that if you're in your third decade or fourth decade of life, that you do not have type 1 diabetes, but we know that that's not the case, because people into their 50s and 60s are developing type 1 diabetes and are continuing to make insulin but unquestionably have type 1 diabetes.   Stacey Simms  13:21 I'm curious, when T one detect was announced, a lot of people in the diabetes community thought and I agree with them. It was so interesting, it was such a great idea. Like let's get more screening, let's get more screening. But when I talked to JDRF, they said no, we will we want everybody in the diabetes community. But we want people outside the diabetes community to start thinking about this, what can be done to try to push this message into families that you know, don't think that they have to worry about diabetes? How are you all doing that?   Dr. Henry Anhalt  13:49 Yeah, what I really focus on Stacey is the folks who are at risk, okay. And those are the ones with first degree relatives, because we know we have data from global programs where they're doing population screening, they're screening everybody, not only second and third degree relatives of people who have type one, or even first degree relatives, they're screening entire populations. And that's terrific within the context, at least right now, of research programs that are well funded. But we're facing a battle ahead of us as we get people to adopt. And we get the payers and the payer community to recognize the importance, which is part of the educational effort. However, we really need to focus right now for the hearing now, because that's achievable, attainable, and the therapeutic agents that are either before the agency now or that are coming are the ones that are going to be the most likely to benefit. And that's why I think right now at risk is the most important population to look at. Got it.   Stacey Simms  14:57 Let's talk about what's in front of the FDA. I remember A couple of years ago trying to pronounce Teplizumab, and then getting really I know, but getting really excited as it seemed to, and you please fill us in, but it looked like the research was showing this is preventing that movement, as you said, from stage two to stage three, so people have the antibodies that show that they have type 1 diabetes, but it kept them from progressing to showing symptoms for two years. And then it looked like three years recently, am I getting all that right? Right back to the doctor and hold in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen, and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar. Gvoke hypo pain is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give Gvoke correctly, I'm so glad to have something different, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk. Now back to Dr. Anhalt. And I just asked him if I was kind of getting your right that Teplizumab had delayed the onset of type one in people for up to three years.   Dr. Henry Anhalt  16:29 You're getting that spot on Stacey. And I think that here, it's important to stress that how do we know that they're actually having this delay? Are there any markers that we can look at. And C peptide is the key, because for the listeners, it's important to highlight that this molecule or this protein c peptide is a measure of how much function your beta cells have, how much of your actual insulin is being produced. And the studies have shown and the authors concluded that in fact, those treated with Teplizumab had stabilization of their c peptide production, and in some cases actually improved c peptide confirming that the beta cell function is being preserved. And suggesting I may add that beta cell function is being restored. So it wasn't only this delay, but it was a delay that was marked by a direct measurable compound or protein that indicates beta cell health and beta cell function.   Stacey Simms  17:40 When we talk about Teplizumab, what is that? It's I assume it's more than, you know, a pill that you would take once and never have to do again. Is it a treatment? What how do you how do people take it?   Dr. Henry Anhalt  17:50 So Teplizumab and I had a really hard time pronouncing that I started working at Provention Bio in December. And I'm finally getting around to it right. And it wasn't only narrow, actually that I heard about Teplizumab when I was working back in 2008, at a hospital in New Jersey, there were these clinical trials ongoing with tech lism ab. And at the time, I became really familiar and saw what the potential that this drug had. But to answer your question directly Teplizumab is administered by IV infusion over a period, at least in the trials over a period of 14 days as one single infusion. So that's the way that the trial that we're talking about the data that we're discussing, that trial had a 14 day single infusion, so IV infusion every day for 14 days straight. That was the data that we talked about was the outcome of that trial. Ultimately, though, the FDA will make the decision of based on the data that exists, how many days of infusion, etc. Got it.   Stacey Simms  19:14 But to be clear, when we're saying it's three years later, those people that they're measuring three years later had, it's still from those first and only two weeks.   Dr. Henry Anhalt  19:23 That is correct. So people had a two week infusion, and this population was followed out. For quite some time, actually, the recruitment took seven years, but this population has continued and when you have this rolling admission into a trial, it becomes a little bit difficult to to characterize, but suffice it to say based on the appropriate data analysis, that's the conclusion that the authors came to and obviously incredibly encouraged by those results. So with the follow up time, We have nearly a year later, it shows now approximately three years,   Stacey Simms  20:05 I may be jumping to conclusions and correct me if I'm wrong. But I'm sitting here thinking, if my son Benny had gotten something like this at 23 months, and we could have delayed the onset of type 1 diabetes, until he almost went to kindergarten like that, to me, I know that there's more implications down the road, but just the idea that he would be able to communicate a little bit better. With me, maybe he could pronounce diabetes, there would be some other things that we could have some really difficult stages that we could have skipped. And I know that you're looking for a lot more than that going forward. But man, that's so remarkable to think about. And I know everybody listening is thinking in their own families, the milestones that can come in three years, it's really interesting stuff.   Dr. Henry Anhalt  20:49 Stacey, I have to pause when I listen to you tell that story. Because for me, I have only a glimpse of the burden that people living with type one, or parents or caregivers experience, I have a glimpse, because I have the privilege of stepping into the sanctity of a family and being open to hearing these things. But to your point, what is that? What does that mean to a child or to a family that you can have a delay of two years or three years? Or even longer than that? What does that mean? So this ability to do that the data indicating that this can do that can do exactly what you're talking about? It can delay to a time where kids can be more able to communicate signs of hypoglycemia, a kid in college, perhaps, delay until after college, and so on and so forth. So how do you put a measure on what that means for a family? You know, what that means? Two years or three years being insulin independent? How can you describe that to someone who doesn't quote unquote, get it? What that means to a family? So I know, just like you would, from personal experience, what I've heard from my patients and their families, how much that could potentially have meant, and how much that can mean to them going forward?   Stacey Simms  22:31 It really is. It's, I was gonna say, it's fun to think about, I'm not sure that's the right way to say it. Because in my mind, it's kind of fun, because I think about how silly my son was at that age, but it is really encouraging to think about, I'm curious, are there any concerns, side effects, anything that people need to be aware of when it comes to the prism app?   Dr. Henry Anhalt  22:54 So you know, I think that every drug has potential risk and benefit. And we have to be fair and recognize that, however, in the data that's been published, from the trial that we've been discussing the tn 10 study, it was shown that the side effects were manageable, that they were easy to address resolved on their own. And that's consistent with all the other studies that have used Teplizumab. So from our perspective, and looking at the data, we feel that it's appropriate to say, yes, there is always a risk, that the side effects that were seen in any of the trials were expected. And were easily manageable   Stacey Simms  23:48 as we wait to see what the FDA will do. Are you still looking for people to be in studies?  You know, my audience is always very interested in that. Are there more studies that people can take part in?   Dr. Henry Anhalt  24:05 Yeah, so we currently have a study ongoing, it's a multinational study multi site in the US called protect. And this study, as opposed to the data that we've been talking about that showed you can prevent progression from stage two to stage three. This is a study for people who are newly diagnosed between the ages of eight and 17 within the first six weeks, and I would urge people if they have any questions, or they need any information to reach out and Stacey you and I can talk about what the best way to have that information or those queries directed because when we talk to people about going online and looking at clinical trials.gov it becomes As a very, very difficult website to navigate. But suffice it to say that this is a trial where kids between the age of eight and 17, newly diagnosed are given an infusion or placebo of Teplizumab. And they are given another dose, about six months or a year later. Again, this is an infusion. However, it's a 12 day infusion, rather than a 14 day infusion. And there are two infusions over the year. And in that study, were measuring c peptide. And as I mentioned earlier in the podcast, c peptide, is a measure of beta cell function. And so the most important measure for us is beyond hemoglobin A1C how are those beta cells working? How is the residual beta cells producing insulin at this point? And how do they produce insulin after the treatment has given as measured by what we call area under the curve of C peptide production? The amount of C peptide over time, responding to drinking a whole lot of sugar, and seeing where it is that the that the C peptide is produced? I think that that's really an important piece. I also, Stacey, if I may take liberty and talk about Provention Bio for just a moment. Yes, please do. Because it comes back to camp a little bit. And you may wonder, like, what's the connection? When I first started at Provention Bio, we had a town hall. And you know, if 45, 50 people I don't remember. And the CEO, Ashley Palmer was talking about the importance of us understanding the type one community and I was like, okay, you know, that's words, know, sounds good. And I said, Okay, is a company dedicated to type one? Okay, that sounds good. And so I chatted the group, and I said, you know, I'm on the board of Camp Nejeda, most of us live in the tri state area, I'd be more than happy to host you and to have you guys pink benches, and, you know, do all kinds of cleanup the garbage in between sessions. And he said, You know, that's not here. That's part of your job. And I said to myself, I've worked in other companies that have been in the diabetes space, I have never heard a CEO get up and say, this is your job. It was mind blowing. And I knew then, you know, I was in the right place. Right. So with that sort of as a backdrop, we are really committed to type one. The innovation here is, I think, a landmark in the fact that it will be the first disease modifying if we get the approval, which we hope, the first therapeutic intervention in type 1 diabetes, since the development of insulin, and potentially the only one that is going to be disease modifying. But we're not just there. And as we spoke about, were in front of the FDA now with the hope that we'll get approval for the at risk population. But we're also in clinical trials to see the ones who are newly diagnosed. So if unfortunately, they've gone on to stage three or symptomatic, or we're also working on a vaccine for coxsackie virus. And so coxsackie has been thought of as a precipitating agent or, or an infection that could potentially provoke or create an immune response that ends up being adversely affecting the pancreas. And the crazy thing is that as a pediatrician, first we would see coxsackie virus all the time. But you know, I have the good fortune of working in a company with a lot of really smart immunologists and I joke and I say, you know, if I would have known immunology was so interesting, maybe I would have paid more attention in medical school. But the fact is, here's another way that we're looking at type 1 diabetes, and the commitment there to innovation is truly remarkable. And I would be remiss if I didn't have the opportunity to state that on this podcast, because I think that speaks to the motivation and it speaks to the genuine commitment to people and their caregivers living with type one.   Stacey Simms  29:53 You mentioned camp, and as we've mentioned a couple of times here you are a pediatric endocrinologist. So you Between the two of those things. You've seen a lot of families over the years, you have probably had a lot of nervous moms and quiet dads in your office with little kids too, grumpy teenagers and independent young adults. I'm curious when you talk about something like to please him on. And you mentioned, as you said, this could be the first therapy, disease therapy it for type 1 diabetes. I know you don't have type 1 diabetes, but boy, are you part of all of those families? Can you speak a little bit about what that means to you?   Dr. Henry Anhalt  30:31 Well, I often joke with people that, you know, I would be more than happy to do anything, including working in my parents’ lingerie store, then taking care of people with type 1 diabetes, not because I hate type 1 diabetes, I do. But it's because I see what happened, what families go through. So for me, what it means to me. If again, if we get approval, I'll feel like I've I finally was able to do something, you know, when you get to the point in your career, when you're working with families who have type one diabetes, and you come to the honest realization that you can't fix it, you no surgeon can go in there and cut it out. But you can't fix it. And the burden really sits with the family, the grumpy teenagers who didn't ask for this. So we're dealing with the intimacy issues, college issues, you name it, the high school kids who are trying to deal with their all the complex issues of psychosocial adjustment to high school and body image, etc. It's unbelievable. So for me as a treating physician, anything, anything. And it's not only templates, a map, but anything that could make them living with diabetes just a bit easier to lift, a little bit of the burden would be incredibly meaningful to me. And that's sort of how I got into this, I was trained to make people who have type 1 diabetes feel that they're never doing a good enough job, that they're at risk of developing all these complications. And you know, when you get to the point in your career, you realize that not only did that not help it hurt, and then really being in a position to hopefully be able to make a fundamental difference and how that goes down. It's really hard to articulate, I have to say,   Stacey Simms  32:31 Did your parents really own a lingerie store?   Dr. Henry Anhalt  32:33 They did. Olga’s corset and specialty shop two Eastern European immigrants who came here penniless trying to build a life for themselves in the golden land.   Stacey Simms  32:45 Isn't that marvelous?   Dr. Henry Anhalt  32:46 That's wonderful. It sure is. It sure is. Yep. Yep. All they wanted us to see their kids, you know, get an education. And of course, you know, me becoming a doctor. I mean, my dad almost ran up to the podium when I got my diploma. He just couldn't contain himself. So yeah, absolutely.   Stacey Simms  33:05 All right. I think we've got everything and more.   Dr. Henry Anhalt  33:08 Yeah, I mean, I would leave you Stacey with, if nothing else, to really, really get the word out for people to screen for dogs to really hear from their families. You know, why don't you screen, I have another kid that to us. And I think to the whole community, now, there's potentially something that can happen. You mentioned trial net, and trial net has done an amazing job in getting tech lism ab to where it is now. And they've done an amazing job at moving the screening field forward. But it's got to get out of the realm of research alone now because now where they're now where potentially at the threshold of a whole bunch of therapies that we hope will get approved and capitalism AB hopefully, if the FDA is happy with the data, and convinced that the drug is safe and effective, which we have great confidence that they will or others coming right behind. So the screening is so critical, Stacey,   Stacey Simms  34:15 thank you so much for joining me, we will link up all of the information and spread the word as best we can. But thanks for explaining everything and come on back, knock on wood. If everything goes through the FDA, come on back and share what's next.   Dr. Henry Anhalt  34:27 I would be delighted to do that.   Unknown Speaker  34:35 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  34:40 More information on everything we talked about at Diabetes connections.com. You can learn more about teplizumab and provention. It's really fascinating stuff. And you know, it's not as easy as you know, one shot and you're done or one pill a day. I mean, it is as he mentioned, a an in hospital procedure, but imagine two weeks of that And then two, three, maybe four years, maybe more of prevention of type one. I mean, what an incredible beginning. I don't get my hopes up often you know me if you've listened for a very long time I I wouldn't say I'm cynical, but I'm certainly not running after every development. But I feel like we've been watching this one for so long, I'm almost ready to put my rose colored glasses on, we'll see, I'll keep you posted on you know what comes out of this, what the FDA decides, and you know, there's going to be a lot more information down the road. Up next in innovations. f It is time to get cynical again, I'm going to be talking to you and bring you some audio about a roundtable on insulin pricing. So stay tuned for that. But first Diabetes Connections is brought to you by Dexcom. And you know, when we first started with Dexcom, back in December of 2013, the share and follow apps were not an option. They hadn't come out with the technology yet. So trust me when I say using share and follow apps makes a big difference. I think it's really important to talk to the person you're following or sharing with, get comfortable with how you want everyone to use the system. And even if you're following your young child, these are great conversations to have at what numbers will you text, how long will you wait to call that sort of thing. That way, the whole system gives everyone real peace of mind. I'll tell you what I absolutely love about Dexcom share, and that is helping Benny with any blood glucose issues using the data from the whole day and night and not just one moment. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.   Last week, a new group or at least new to me called investigate insulin now partnered with the American economic liberties project and held a discussion about the impact of insulin pricing. I'm going to read you the description from their website. “Nearly 7 million Americans suffering from diabetes need insulin to live but a cartel of drug companies who control the production of insulin, Eli Lilly Sanofi and Novo Nordisk have made the lifesaving drug criminally expensive by colluding with each other to hike prices in lockstep over and over and over for years. On March 18, at 12:30pm, the American economic liberties project and the investigate insulin now campaign hosted a discussion focused on the dangerous impacts of the insulin cartel racial inequalities in insulin access, and what Congress and the new Biden administration must do to hold these corporations accountable and address concentration in this critical industry.” And that is the quote from the website. I'm going to link this up, you can watch the entire discussion. It is less than an hour, but it features Congresswoman Katie Porter, who you may recognize from her whiteboard. Many people just know her from that. But she's part of the oversight Subcommittee on economic and consumer policy. And then the remarks here are from people with the American economic liberties project to an international insulin advocates, the executive director of Social Security works. So there's a lot of people talking here I want to bring you one short clip. This is about a minute long. And this is Matt Dinger. He is a patient, as you'll hear, he is an advocate, and he is a board member at T one International. He has just said that he doesn't know anyone who uses insulin, who hasn't rationed it at one time or another. And he sets up His comments here by saying that at one point he had no insurance for just one month he was switching jobs, and he knew that he would have no insurance for a month. And that resulted in him rationing insulin ahead of time. So he would have a stockpile, and then also rationing after he got the job and had the insurance because he knew his deductible would mean he would be paying $1,000 a month for insulin for the first few months.   Matt Dinger  38:51 I'm lucky to be in the position that I'm in. And even so I'm a job loss away from financial ruin. Because the concentration of economic power when it comes to the price of insulin lies almost entirely in the hands of three companies. I am completely beholden to them. And I'm terrified by that every single day. Corporate concentration and monopolistic behavior by the big three insulin manufacturers allow them to set prices as high as possible, with no fear of losing market share. This includes things like shadow pricing, which is increasing the prices in tandem with one another instead of competing to set the lowest price, pay for delay agreements, lawsuits, taking biosimilar insulins off the market, patent games to extend their product exclusivities long past when they would normally expire. As someone who has worked in healthcare for the entirety of my professional life. I understand the price of innovation. And let me tell you leveraging anti-competitive practices in order to give your CEO a pay package of $23.7 million isnt innovative. and businesses that would do that while their consumers are dying aren't companies, they’re cartels,   Stacey Simms  40:01 it's pretty powerful stuff. I'll link it up. If you want to watch it, it is less than an hour. The investigate insulin now campaign is a coalition of a bunch of different organizations. And I think we're going to be hearing a lot more from them, because these are some pretty big names that are backing them. And while there's a lot of hope that the new Biden administration will move on some of these, there really has been no indication from Democrats or Republicans, in my opinion on the federal level that we will see strong action taken. So I'll continue to keep you posted on this one as well. I can't imagine the insulin companies are going to take kindly to being called a cartel. I thought that was some very interesting language. Alright, before I let you go reminder that I will be speaking live to some JDRF folks out west tonight, that's linked up on social media and in this episode, as well. And if you know, if you're listening a couple of days or weeks after this episode airs, I'd love to come to your chapter virtually, or maybe in person down the road. So please reach out we do have an event tab at Diabetes connections.com. And you can always request me to come speak or just you can ping me anywhere, email me directly. I love talking to groups. It's always so much fun. I always learn something as well. In our classic episode this week, we're going to be talking to a Broadway performer Maddie Trumbull, and she has played lead roles and Wicked and Newsies. And we'll check in with her and see how she has been doing this interview was five years ago now. And of course, the last year has been you know, we've seen Broadway completely shut down. So I checked in with her and I'll let you know what she is up to in our classic episode airing in just a couple of days. Thank you, as always to my editor John Bukenas from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here soon. Until then. Be kind to yourself.   Benny  41:57 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

How do you treat lows? We're not just talking about candy vs juice. Treating lows also means managing expectations, considering mental health and even addressing other people's reactions. The authors of the new children's book "When I Go Low" join us for a great discussion about what can be a frightening issue for kids and adults who use insulin. Mike Lawson and Ginger Vieira both live with type 1. They explain the thinking behind the book and talk about their own experiences with low blood sugar. Stacey shares her experience as a parent of a young child with type 1 who couldn't articulate when he felt low. In Tell me something good, I checked in with the folks from Children with Diabetes Friends for Life.  And I have some fun, professional news about Benny. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.   Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android   Episode Transcription:   Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:22 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:28 This week I'm talking to the authors of the new book When I go low, Mike Lawson and Ginger Vieira have lived with type one each for a long time and they have their favorites when it comes to treating lows. Ginger Vieira  0:41 Gummy lifesavers, I really like because they don't freeze and they don't rot. So I put them in the car. Each gummy lifesaver has four grams of carbs, I think Skittles do freeze. It's very hard to chew frozen Skittle but they also have one gram of carb. You gotta keep stuff in your car.   Stacey Simms  0:56 your car frozen up north down here in the south. We worry more about stuff melting this time of year, Ginger and Mike and I go in depth on lows treating managing mental health around them. And how those of us without diabetes might better support our loved ones during and after lows In Tell me something good. You all wanted to report good news at medical checkups. So we'll talk about that vaccine rollouts. And I have some fun, professional news about Benny, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am always so glad to have you here. We aim to educate and inspire about diabetes with an emphasis on people who use insulin. My son Benny was diagnosed right before he turned two more than 14 years ago. My husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast. I love talking about children's books. And not just because my kids are old now. And all the children's books are put away in a closet. But it's such a wonderful, wonderful tool when you're teaching not just about diabetes, but about so many things. And of course, when Benny was diagnosed, he was so young. You know, he was 23 months old. We were reading tons and tons of picture books anyway. And one of the first things I did was look around to try to find something and short there were some terrific diabetes books for kids back then our favorite was one called Jackie's got game. I don't know if that's in print anymore. But there just weren't a lot of books. And now Gosh, I feel like every other week a new picture book for little kids with type one is coming out. And that is fantastic. You know what we need more of? And Mike and Ginger, maybe you can get on this. I think we need more books for middle schoolers, older elementary school kids, even high school kids that aren't so much about type one, but have a protagonist with type one. And it's just there. There are a couple of books like that we've talked with the author KJ Howe wrote a book I'll link that up. Kurt Anderson has a book as well. I'll put those in the show notes. But they're for adults, and I wouldn't in good conscience have a middle schooler read some of the stuff that's going on in those stories. So I would love to see that. So get on that guys, right? Not like you have anything else to do. But this episode is gonna be about more than books. Ginger and Mike are longtime advocates and hearing them talk about low blood sugars was really eye opening to me, I learned an awful lot even after all of these years. I think adults with type one are going to really enjoy hearing them talk about their experiences. And parents, we cannot learn enough about listening to our children to adults with type one about what they need from us and want from us and how we can help support them. And even though Benny is more independent every single day, I still need to learn a lot about backing off helping and supporting and not smothering. So this was a really good discussion for that. Okay, we'll get to Ginger and Mike in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And this is exactly what we're talking about today. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke Hypopen comes in. Gvoke is the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it you pull off the red cap and push the yellow and onto beer skin and hold it for five seconds. That's it, find out more go to Diabetes, Connections comm and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon dot com slash risk.   My guests this week are Ginger Vieira and Mike Lawson Ginger  has lived with type 1 diabetes and celiac since 1999. She was diagnosed with fibromyalgia in 2014. She is the author of five books. We have talked I heard before on the show about some of those books, especially pregnancy with type 1 diabetes. I will link up tons of information about Ginger and those other books so you can check them out. She has two little girls, they did a read along on YouTube. But with this book, I will link that up as well. You've probably seen Ginger jumping rope on Facebook or Instagram. She is very active. She's I mean, she's certified in coaching, personal training and yoga. Mike Lawson was Misdiagnosed with Type two when he was 20. It took more than a year for him to get the right diagnosis. He had previously worked with diabetes hands Foundation, that's where I first met him years ago, he now works for a theatre production company in San Francisco and with the insulin for all movement, and Mike is the author of another book called Open up your bag. We've talked him on the show about that as well. I'll link up all of his stuff. And I will also include diabetes doodles, which Mike talks about here, Ginger, and Mike, thank you so much for joining me this book is I was gonna say just adorable. But it's so much more than that. And I can't wait to talk about it. Thanks for being here.   Ginger Vieira  6:02 Thanks for having us.   Mike Lawson  6:03 Yeah, nice to see you.   Stacey Simms  6:05 A little bit later on. I want to talk more about the substance here. It's always so helpful to get insight into how things feel so I can help my son more. But let's start and Ginger, I’ll ask you, how did you all come up with the idea for this book?   Ginger Vieira  6:20 You know, it came together with a few things that just kind of were wonderful coincidences, Mike had just illustrated and wrote the book, open up your bag, which is on the shelf behind him in the video. And at the same time, on the other side of the country, I was reading children's books to my kids who don't have type one, thinking about the time when I've had lunch with a bunch of kindergarteners who had type one, and how incredible it is that at that age, they have to count carbs and take insulin and prick their fingers and have all these gadgets in their body. You know, I'm 35. And I can't stand wearing a CGM anymore. It's like, and to be that little and deal with the burdens that come with this. And then I know as a mother, right, like trying to get my three year old potty train or even when they are potty trained, being like, do you need to go to the bathroom? They're like, no. And then 10 minutes later, they're like rushing to the bathroom because they can't you know, and to listen to your body is a skill that you build and detecting the symptoms of a low is a skill and a degree of self awareness. That is a lot to ask of a little kid. Yeah, that's a long answer to question.   Stacey Simms  7:31 No, it's a great one. I do have follow up, though. You were having lunch with kindergarteners with type one?   Ginger Vieira  7:36 This is a long time ago. But it really stuck with me that I was invited to meet a bunch of the kids in the town where I grew up who have type one. And low blood sugars are terrifying. And so it's I'm even more aware of what I witnessed now that I have little children. I have a three and a six year old. And to imagine them having to do what I watched these five year olds doing. I was diagnosed with 13. Right and it sucks at any age. And like you came on and talk to us a while ago about open up your bag about that book   Stacey Simms  8:04 that ginger, which is great. I don't know if you were surprised. I was not because the you know, the the diabetes community of parents that need something like that is so responsive when there is something good. It seems like you're a little bit overwhelmed by the response that you got to that. Can you talk a little bit before we talk about this book about what's happened since   Mike Lawson  8:21 well, open up your bag did get some great kind of following from folks who pretty much the general sort of comment that I received was like, we just needed something there just wasn't enough, maybe there are a couple of their books, and they're all every kind of type one book that I've read is great. So I'm not here to kind of knock any of the other stuff that's out there. But there's just not enough, especially if you're kind of breeding it every night before bed, like it'd be nice to have a second title to read and open up your bag. And when I go low, both of them are just kind of their happy books with Ginger just said kind of sounds a little bit scary. Like kids can't recognize these symptoms and stuff like that kind of is a scary topic. But the book that Ginger wrote really does it in a very light hearted way. Let's kind of just talk about the symptoms. And let's talk about how we're going to kind of treat them and it's not scary, it's happy and jovial and it's fun and open up your bag as well as kind of like, let's just kind of collect our diabetes supplies and kind of make a little singsong about them. That's kind of been the general reception, and it's been great.   Stacey Simms  9:28 So let's back up and talk about your experiences you both live with type one. It's been a while it may surprise some people I doubt it because we have a really well educated and fabulous audience. But it may surprise some people to hear that they still have low blood sugars, like, still? And  I say that with humor, right? We're not judging. This is not something that goes away. Mike is showing his little supplies nearby. But I'm curious if there was as you were writing this book and ginger, let's start with you, as you were writing this, what about your own personal experiences that kind of been formed, what went into it?   Ginger Vieira  10:01 I mean, a big part of what so there's several characters in the book and everybody except mom, cat has type 1 diabetes, and they all are sharing different symptoms that they feel when they're low. And that really for me, I, you know, I know that when I'm low and I'm on a treadmill, one of the first symptoms I feel is that the front of my eyes going numb, versus when I'm in bed, and I'm waking up in the middle of the night, and I'm low. The first symptom I feel is that I wake up and I like, Why the heck am I awake at 3am? You know, and it's not till I sit up there, I'm like, whoa, I'm low. And so, you know, I figured that out when I was like, 22. So to ask for little children to like, be that self aware is, it's an idea that we're really trying to offer them because the same way that you can encourage a little girl to know that she's smart and beautiful, is through the messaging you send, right. So we're trying to help send the message that you do have the ability to feel your lows coming on and send them you know,   Stacey Simms  11:03 let's let's kind of deviate from the book and kind of go further into that, because I feel like, again, and I have had occasional low blood sugars. I mean, once a year, basically, and I've shared this on the podcast, just recently, I had a low while I was taping the podcast, I went down and measured my blood sugar was 46. So it was a real low, but I'm fine. And it happens so infrequently. But I got it. I mean, I'm fine. Ginger made a mom face. But you know, I have talked to my doctor about it, I have to eat well, and be smart, you know, but things are gonna happen. And I'm not always smart. And that's okay, that's being a human being. So I just have to be prepared. But it did give me some incredible insight into just how to me how scary it was to be low, and how disorienting. And the example I gave was, there were two things that happened. One was I really wanted juice, but my husband was hanging around and he was like, What do you want to drink? And I said milk, and I hate milk. And I drank a glass of milk. It was like, and he didn't question me and I sit him later, he said, My mouth said what my brain was not thinking it was very strange. And then for the next hour, I was so hungry. I was just really, really hungry. And Benny, of course was I told you know, you believe me. So to me, it wasn't frightening because it was well controlled. I was here it was not a big deal. But it was very eye opening. So I say all that to and Mike, let me start with you, would you mind just kind of sharing what it feels like for you. And I know it's not the same all the time. But what is a low blood sugar kind of like for you.   Mike Lawson  12:30 It's funny, you use the word disorienting. And that's what I would use as well. Especially recently, I've noticed a lot of my lows are kind of I'm My mouth is getting detached from my brain. And I'll be kind of, you know, a few minutes into a story about I don't know, some documentary I watched and like, why am I telling this story right now. Like, I'm just kind of rambling off details and like, my thoughts aren't necessarily connecting with kind of a point. So I kind of get rambley in gingers in the book pointed out mad. And it wasn't really until I read this picture book that I started kind of analyzing that. And I do get a little bit angry a little bit sassier. And my tongue gets a little bit sharper. So that's something that I'm noticing and trying to kind of communicate with the loved ones around me to sort of say like, Hey, this is a symptom and not necessarily to explain it away Why I can be a jerk. But to kind of like say like, Hey, if you're kind of noticing this, and you know, we haven't eaten in a while, or we just got back from a hike. Like, that could be why and let's figure out what I need to do after that. So I feel like angry and angry is a new one that I'm learning to sort of analyze, but disassociated and kind of dizzy and rambley. Am I low right now?   Stacey Simms  13:46 (laughs) or is that just being part of a podcast? A little rambling? Has it is, as you said, you're sort of recognizing that a little bit more now. But Has anything changed for you over the years of being diagnosed is significantly in terms of how you experience lows? Right back to Mike answering that question in just a moment. But first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all that and more. No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels. Find out more go to my daario.com forward slash Diabetes Connections. Find out more go to my dario.com forward slash diabetes dash connections. Now back to Mike talking about what has kind of changed for him over the years when it comes to lows   Mike Lawson 15:03 What's changed for me is I've learned to sort of treat them and not ignore them. And I don't think that this is uncommon. I had this problem where I know a low is happening, I could feel it and sort of in my head, I'm like, well, maybe this one will rebound on its own or will take care of itself. And I'll kind of just sit and wait until it's like an emergency. And that usually then leads to me eating anything I can get my hands on which then we you know, like, it's a cycle of kind of. So I've been trying to learn, like, if you feel that symptom, like let's take care of it right now. And that's made them a little less drastic and easier to recover from     Ginger Vieira  15:44 I mean, a couple things came to mind when you asked that. One is that I actually I think being a parent has made my lows feel more like an emergency, you know, because it's like, there's nothing less fun than being a playground and being 45, 45 blood sugar. like being in the middle of Costco with both my kids and then having a really bad low because of a miss time or miss guess, and insulin like that. It's just miserable. So I feel like I'm on much more alert for oncoming lows, because I hate having them as a parent. So I've also lately if I wake up a little bit low, like even 50, 55, I will let dawn phenomenon correct my low, because I usually need a unit of insulin as soon as I wake up to prevent me from rising 100 points. So if I wake up low, I've actually experimented with seeing if dawn phenomenon will fix it, and it does. And then I still end up needing a unit of insulin eventually to prevent a further rise. But it's been an interesting, obviously, I'm not like sweating and shaking with that kind of low. It's like a very steady just sitting, you know, at 55 or something.   Stacey Simms  17:06 Right? That's something you have to be a bit experienced to have a backup plan.   Ginger Vieira  17:10 And I'm not getting in the car, you know, it's like, right,   Stacey Simms  17:13 but we've done that over the years. Yeah, I mean, you know, once you're a while in I think most people, I don't want to say experiment on themselves. But that's kind of what it is. And we've done that, you know, we've kind of let it ride and I'm right here. But let's learn. What do you think you would like you know, spouse's parents, other people around the person with diabetes who get diabetes as much as we can. But what do you want us to know about low blood sugars?   Ginger Vieira  17:38 Even after it's come back up to a normal level you feel terrible for I mean, you mentioned feeling hungry for an hour, you feel terrible for a few hours. Other it's like a headache, or you're just exhausted or like, I'm just constantly wanting to eat everything in sight, even though your blood sugar's now 120.   Mike Lawson  17:56 I think that's a good one. I also would want to communicate kind of like the urgency that I feel, I don't act like myself for a few minutes, because I'm kind of focused on just one thing. And that's bringing this number up. And not that that excuses me, like I said before, to be a jerk to everyone around me. But it's sort of like, get out of the way for a minute. But don't talk to me about why I'm low. Like that can happen later. Like, right now I need to just fix this. And that's all I can really think about.   Stacey Simms  18:25 That's interesting, because I do think that many times I have said, while we're treating, like what happened. Let's analyze the situation and learn from this right?   Ginger Vieira  18:35 I'll tell you what happened. my pancreas screwed me over. And that's all we need to talk about on that subject ever again. Yeah.   Mike Lawson  18:44 It really is just one extra drop, you know, like, can send you over.   Ginger Vieira  18:48 It's so easy to go low. That's such a great point. Like I hate when doctors are like, Oh, you had a low blood sugar. Because Mike is heard me talk so much about apples. But I eat an apple once a day, pretty much almost every day. And they're all different sizes. And if you get honey crisp one day or Fuji the other day, they're different sweetnesses to the little book that you got in 1994 that said, All apples are 15 grams of carbs is lying to you. And it's so easy to take one unit more than you thought you needed for a meal.   Stacey Simms  19:20 We learned that very early on with bananas. Right? Because they're different sizes and ripeness.   Ginger Vieira  19:25 Yeah, that’s a whole other thing, right?  you cannot estimate that accurately.   Stacey Simms  19:30 I used to try to really figure out I read and I'm so sorry. I read this very early on. A parent said something somewhere that there is never not a reason. You know, you can always figure out what happened. And that's probably true. If you're like a molecular biologist or you know something you know you have   Ginger Vieira  19:48 you might be able to always figure out what caused it but that doesn't mean you can control or prevent it.   Stacey Simms  19:54 Exactly. And to my mind, it just seemed like a complete waste of time to spend the energy. The little Energy I had as a parent of toddlers to analyze how ripe was that banana. It was more like, okay, we know this could happen. So let's be prepared.   Ginger Vieira  20:09 Yeah. Take a picture of it. Wait till the next batch of bananas looks as Brown is the one you know, I'm   Stacey Simms  20:14 not even that good. I'm just like, I think it was this right now. Yeah.   Unknown Speaker  20:17 Yeah.   Stacey Simms  20:18 So what do you What's your go to for treating Lowe's. Mike, you showed us a bag of I think what was that jelly beans or something. But what's your go to   Mike Lawson 20:25 jellybeans are new for me. Ginger has helped me in so many ways, man, this is 100% kind of hearing her talk about lows. We've done you know a few different talks and stuff after this book. So I've been picking up a lot of tips from her. So I'm trying to sort of get something that's easy to dose. Because my low treats are not treats. It's not something that I should be kind of looking forward to or enjoying. It's something that I should sort of be able to easily count when I'm in that low brain moment. I also do like those pouches of applesauce a lot because those are, you know, 10 grams of carbs. And usually that's kind of just what I need. And then I kind of can sit on my hands for the rest of the time while my brain wants to eat anything else that can get its hands on. So apple juice and apple sauce packets. I don't get a big thing of juice and pour it out because I'm not good at counting when I'm low. something easy is important to me.   Ginger Vieira  21:16 Yeah, I would I echo that bottle of juice like the big bottle. No way. You can go up a whole bottle of juice if your blood sugar's 45. In a second. I personally tried to develop like some little rules for myself that I've put into books. That's what Mike is kind of talking about two I think and it's to prevent overtreating lows right and to treat a low in a way that helps it come up the fastest. So I like to use things like the jelly beans jelly if you get Jelly Belly brand. They're one gram of carb each so you know you can treat a mild low with like eight grams of carbs, gummy lifesavers, I really like because they don't freeze and they don't rot. So I keep them in the car. Each gummy lifesaver has four grams of carbs. I think Skittles do freeze. It's very hard to chew frozen Skittle, but they also have one gram of carbs. Because you're gonna keep stuff in your car.   Stacey Simms  22:10 And we're in the south, so we can't keep stuff that'll melt. We can't keep candy in the car. Yeah, it was funny. I was trying to think of frozen Skittles, what you were talking about that I realized that most?   Ginger Vieira  22:16 Yeah, yeah, that's keeping stuff in the car. And I walked my dog a lot. So I wouldn't be able to treat like not that I would have four loaves in the dog walk, but I want to be able to go a week and not worry about resupplying the low food. And so those little things that pet that like jelly beans, you can carry 100 jelly beans so easily in your pocket. Vinny has changed a lot over the years. He's always and still does use those 15 carb juice boxes. Because it's easy. It's a little bit overtreating, sometimes, but not by a lot. And it's not the drinking down the whole thing.   Stacey Simms  22:48 I don't care as long as he's treating, and he's comfortable that that's fine. But when he started driving, when he got his permit, we started talking about things to leave in the car. And we discussed it for about three seconds, because I had a bunch of suggestions that I didn't actually get to, because he said it's just gonna be tabs, just give me tabs. I was like you've hated glucose tabs, you've never He's like, it's perfect. They won't melt, they won't freeze. I can always get to them, like just buy me a big honkin thing and we'll stick it in the glove compartment. Yeah, and he's had to treat a couple times, and it's been perfect. So all of my great suggestions went to the curb. Well, you   Ginger Vieira  23:19 know, like, and there's such personal I had a really bad stomach virus, stomach bug when I was pregnant, and I regurgitated glucose tabs. Alright, so I've never touched one since then I really never will. And like, I joke that I would sooner die than have to eat a banana to treat a low because I hate bananas. I hate to write, but there's like certain things that you just don't work for you personally, you know, and you have to figure that out.   Stacey Simms  23:47 Yeah. And you know, circumstances change and walking the dog driving the car, that kind of stuff. When you decide to write a book like this. I mean, both of you have written other books. Ginger, I know you've actually talked about how rewarding it has been, you know, to share this kind of information. Where do you start when you're thinking about kids? I just looking at it, I noticed a couple of things. And I don't want to like say too much. But I will say all the kids are not kids. They're animals. Right? Is that a drawing Quirk? Is that a choice you made? Is it something you want the kids to be able to see themselves no matter what they look like? I'm curious like how you came up with that?   Mike Lawson  24:24 Yeah, I think I love children's books. I've always loved them. I'm kind of loved them for maybe a little too long. Even at a break into my later childhood. I was still checking out kids books and trying to redraw them. I was a big fan of if you give a mouse a cookie, and I would draw like fanfiction, where it kind of like extended the story. I just was really into it. And almost all of my favorites were the characters were animals. They weren't children. And so I kind of just thought that's how you do a kid's book. But if you do think about it, like you take a look at this book when I go low, and all of the characters are kind of relatable to you, because none of them are just a little boy or a little girl with blond hair, or, you know what I mean, they they're kind of everything. So you could kind of take a look at the group of birds and identify in that you could take a look at the pig and say, like, sometimes I'm a little piggy, you know, like, you've kind of relate to all of the characters at different times. So I like that a lot. And I think what's funny is when Ginger wrote this, she sent it to me, and we kind of had her initial conversations, and they were all animals when she wrote it. It wasn't like a conversation where I had to convince her that that was a good idea. She didn't. She knew it was   Ginger Vieira  25:37 they were all underwater animals, because I was at first illustrate it myself. And thank goodness, I found that Mike was ready for a project because he did 100,000 times better.   Stacey Simms  25:49 Are there things that we should be looking out for in the backgrounds are those streets that are familiar to either one of you, I don't want to give too much away. But I was curious.   Mike Lawson 26:00 Yeah, so the background photos are just kind of stuff that's around me here in Oakland and San Francisco, there's a few stock images as well. But you'll notice there's bushrod Park, which is just down the street from me mosswood Park is around the other corner. So they're kind of just like photos from out and about.   Ginger Vieira  26:19 So if you want to stalk Mike, then you've just been given like four tips on how to find him. So one thing that it's really not just a message about lows, we've really tried to incorporate a few messages for kids throughout the book where, obviously there's a lot of talking about lows, but there's also one that they're not the only one in town with type 1 diabetes. I've been at counselor at diabetes camp for in the winter, as a little weekend camp for teenagers for years. And you can just see like, the minute they walk in the room is like, oh, everybody here is just like me, taking a shot at lunch is no big deal anymore. And that that burden becomes so much lighter. So finding I've really any parent that's listening, like please send your kid out to diabetes camp, no matter how much they say, I absolutely do not want to go it will help them in more ways than like you can measure. And also several points in the book with between characters, they talk about how brave they have to be to deal with type one. And one thing that I hate to witness online is when a parent is talking about their child's type one with pity, you know, feeling bad for the kid because I think there's nothing more poisonous to confidence and courage and perseverance than pity. And instead of you know, you still want to acknowledge how hard it is. We're not you don't want to dismiss how hard it is. But instead of pity instill them with this sense of like, look what I deal with every day. I'm awesome. You know, this, like sense of confidence and impressiveness, you know, and so there's that message as well, like you are really brave for dealing with this every day.   Stacey Simms  27:58 All right, I hate this question as an author, but I'm going to ask you guys anyway, because it's always fun. So books been out since January? What kind of reaction Have you received? Has it been different from your other books? And now I can ask you both of this, you know, but I can ask you both this question. Mike, you're nodding, was it different from open up your bag?   Mike Lawson  28:15 Very similar, the receptions? Great, you know, seeing parents and children holding the book and talking about conversations that they've had thanks to the book is great. We've heard from a couple of parents that they appreciated the conversation that was created because it wasn't based around fear. It was sort of just a nice conversation about something that's very serious, but the conversation didn't have to be serious and scary. So that's great to see. Seeing people holding the book and kind of using it as a tool with their children has been very rewarding. Ginger, I'm sure it's a little different than some of your other books.   Ginger Vieira  28:52 Oh, Mike did we did get the question of like, how could a cat and mouse possibly exist as friends in the same universe?   Mike Lawson  29:02 Our harshest critic, and she was four.   Stacey Simms  29:05 excuse me. Yeah, that's awesome.   Ginger Vieira  29:09 We're trying to forge new communities, you know. I mean, I think with any book, it's, it's the same feeling of like, it doesn't matter if it's, I know, it's always rewarding because you get that, that this affected me in a positive way. And it made living with type 1 diabetes a little easier today or this week, or ever. It doesn't matter what it is. It's, it's worth it.   Stacey Simms  29:35 One of the unfortunate trends I've noticed really just in the last five to eight years, among parents is Listen, you always want to respect lows, right? You don't want to ignore them. You want to treat you want to learn about them. But there seems to be I don't know if it's a CGM thing or a social media thing. I see more and more parents who are afraid to let their children do things away from the house, sports, all that stuff because Cause of low blood sugar. Are you kind of hoping that even though this is a book aimed at the kids, that the parents might kind of understand a little bit more about a Ginger you're making, you're kind of making me nervous with your face there.   Ginger Vieira  30:11 I mean, I just technology’s… I feel like CGM has really changed how people, parent children with type one. And it's become much in some ways I've witnessed online. There's this like ultra-micromanagement of trying to get this flatline on the CGM and, like ultra-micromanaging their diet to the point that I think there's a whole new batch of kids that are going to be struggling with a, I never had anybody micromanage my diet as a 13 year old with type one. And I still had to like work through my relationship with food in my early 20s, because of diabetes. And so now you have like five year olds that are being put on ketogenic diets, and it's like, this isn't going to like succeed long term, I don't care how willing they look like they're into it right now. It's going to miss shape their relationship with food, and it's not necessary in order to thrive with type one. So yeah, I think cgms have, obviously they've provided this ultra safety, but it also provides like this ultra level of fear, I   Stacey Simms  31:14 think, I just feel like we need to find better ways to use the technology to thrive and let our kids you know, thrive with it.   Mike Lawson  31:21 The book is called when I go low, not if I go low, like we know you're gonna go low, it's if you're doing insulin it's gonna happen and kind of being afraid of them. And acting like that's a failure to go low is going to kind of set you up for some really heavy shame and kind of feelings that you don't necessarily need to have. I don't know, it's a complicated story. And I understand why you might fear lows, but personally, my fear of low blood sugar has actually led to my highest day one sees because then I'm under treating and or, you know, under injecting insulin and sort of like living high, which isn't good for me either. So you kind of have to figure out how to walk as close to the line as possible. And sometimes you're gonna dip below the line, and sometimes you're gonna be above the line. That's the game.   Ginger Vieira  32:08 And there's so much pressure these days to get an agency that's like in the low five than the high fours because of ketogenic diets. And now an agency of 6.1 is like, Oh, that's no good. And I see it in parenting communities. And I feel really bad for the kids were like, you can live an extremely long, very healthy complication, free life with an A1C in the sixes. This is not, you know, like, you don't need to put your kid through taking away joys of being a kid. Yeah, to get anyone see. That's   Stacey Simms  32:40 crazy. It's complicated. And I really hope that books like this help, because it's the parent who's reading it, the kid can learn a lot. But sometimes the parent I know, for me, it's always helpful when I learned from people who actually live with type one.   Ginger Vieira  32:54 I do think like, as someone who's a parent, and someone who has type one, but my kids don't have it. I do think that type one is a lot scarier through a parent's eyes than it is living with it. It sucks living with it, I would give it up in a heartbeat, right? But I think there's the fear is bigger when it's coming through the parents eyes and the room for worry and pity. And I don't want my kids to have to deal with type one, even though I know Look, my life is fine, great, right? Like I'm alive doing it. But I still dread like if they were to ever develop type one.   Stacey Simms  33:30 Right? And not to minimize it because I 100% agree with what you're saying. But it's parenting is like that with everything right? Your kid gets the flu or is throwing up and you're like, I wish it were me. I feel so bad for them. You know, it's a totally different perspective than going out in the world. Like, I   Ginger Vieira  33:43 hope you don't get in some weird accident. I mean, is it like just learning to walk? I was like, Can I put helmets on these kids are? pediatricians like that's not necessary. But there are sharp and I'm not really a worrywart like that but like suddenly you just Yeah.   Stacey Simms  34:00 Alright, before we let you go silly question. Are any of the names in the book named after people or anything that you want to share? They're just names we love. Yeah,   Ginger Vieira  34:09 we're working on a second one. Who's Mike?   Unknown Speaker  34:13 Like, how much should we reveal?   Mike Lawson  34:15 You do it?   Stacey Simms  34:18 Is it the same topic?   Mike Lawson  34:19 No,   Ginger Vieira  34:20 not the same topic. It's called Ain’t Gonna Hide My T1D. That's all we're gonna tell. All right.   Mike Lawson 34:26 We do have a website, which is diabetes, doodles, calm, free, downloadable supplemental worksheets, some word searches and coloring pages that go with along with the book. You can also find links to by when I go low and open up your bag, their   Stacey Simms  34:41 web series, have you heard from siblings? I meant to ask that have you heard from siblings that read this, like,   Ginger Vieira  34:45 you know, we've heard from actually parents who have type one, a dad ordered it to read to his kids so they would understand his type one better. And I read it with my kids. We have a read aloud on my YouTube and they know I have type 1 diabetes and they Now I believe mommy alone is low. So it's definitely I think grandma's could benefit from it. I think my aunt could benefit from reading it, you know, she thinks, Oh, we've had it so long. You take such good care of it. It's easy for you, you know, it's like, Nope, I still go low, just like the cat.   Stacey Simms  35:19 Well, thank you both so much for coming on and talking about this. I loved hearing the stories behind it and getting better perspective and keep us posted when the next one's coming out. That's exciting. Thank you.   Ginger Vieira  35:29 Thanks for having us.   Announcer  35:35 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  35:41 More information about everything we talked about, just go to Diabetes connections.com, there's an episode transcription, you can go to the homepage and learn lots more, and order the book as well. And if you do, please leave them an Amazon review. I love the book, I left them a review, you can read it on the Amazon homepage. I just think that especially for younger children, a book like this is so helpful, because you can't expect I didn't say this during the interview. But I'll say if you're reading this book doesn't mean that your child is going to recognize lows. Right? I think that's one thing that I get asked a lot, especially when it comes to toddlers and children, frankly, under the age of seven, six or seven, how can my child can't recognize lows or when can I expect that to happen? And every kid is different. And your endocrinologist may have more information for you about this. But I think it's unrealistic to expect a three year old or even a five year old or sometimes a seven year old to really understand recognize and articulate that they're having a low blood sugar unless you have a child who is a preschooler and says, Mom, I think I'm having an ear infection, or I have a headache, perhaps I have a sinus infection. Kids don't think like that. They don't talk like that. They don't know what's going on. They don't even have the tools to articulate. My daughter is a great example. My daughter Lea doesn't have diabetes. And when she was little, she had a series of, she would get chronic ear infections for over a year and a half, we finally did ear tubes, and she had cleared everything up. But she used to get an ear infection and she would punch us she would just get angry. She wouldn't even say my ear hurts. Or she wouldn't point her ear and say my ear hurts. We just knew something was going on. This is between the ages of probably two and almost four, because she would be mad at us. And I think with lows with little kids, it could be the same thing. You can talk to them more about how to recognize it. And a tool like this could probably help speed up the process. But that's the only thing I would caution about and Mike and Ginger aren't making any claims like that. It's just a question that I get asked quite often. All right, tell me something good in just a moment. But first, Diabetes Connections is brought to you by Dexcom. So I was watching a movie with my husband the other night with my husband Slade and I got a Dexcom alert. Benny was upstairs in his room. And for some reason, it just took me back to the days when we basically had blood sugar checks on a timer. Do you remember this? Some of you people who have been around for a while, we would check doing a finger stick the same times every day at home and at school. And of course, whatever extra we needed to. It's amazing to think about how much our diabetes management has changed with Dexcom share and follow. I didn't stop the movie to get up and check him. I knew what was going on. I mean, I could decide whether to text him I could decide whether I needed to go up and help out using the share and follow ups have really helped us talk less about diabetes, which I never thought would happen with a teenager. Trust me He loves that part too. That's what's so great about the Dexcom system. I think for the caregiver or the spouse or the friend You know, you can help the person with diabetes manage in the way that works for their individual situation. Internet connectivity is required to access Dexcom follow separate follow up required Learn more at Dexcom comm slash compatibility. In tell me something good. This week, I popped into the friends for life Orlando Facebook group to gather some good news stories. And this is that big conference that goes on in July. They have not yet decided whether they will be virtual or in person come this July. But children with diabetes the group behind friends for life is putting on a virtual conference this coming weekend. It's their spring conference, I will link up more so you can find out register. It's always a terrific time. And I find these virtual conferences a really great way to just connect. I go and I listen to presentations. But more than that I kind of hang out in the hallways and talk to other parents and say hi to my friends. It's been wonderful. So ask them for some Tell me something good. And Laura Bilodeau who is the organizer, the Grand Poobah of all the friends for life stuff said Sam her son and Grace are planning to move back home house hunting in Detroit in the time of the pandemic. Oh my goodness, getting married in September. Life goes on. That is wonderful, Laura, such good news. I'm excited for you and your whole family. More wedding news, Erin shared I got a great report at the retina specialist No need to return for nine months. The next time I go I will be a Mrs. So that's fabulous. Both good news things right a wedding and a great eye report. I have a retina specialist appointment coming up. I don't have diabetes, but I've had some issues. And that is such a tough eye exam. And I know many of you, as you'll listen are saying, Stacey, get over yourself. We have to do that all the time. I know I do, too. But I hate it so much. I'm such a baby. So good on you, Erin. Thanks for sharing that inspiring us to be brave at our retina specialist appointments. Wendy says my first in person endocrinologist appointment was yesterday or a Wednesday was excellent. But I'm sharing this because Wendy also says she's been working nonstop scheduling appointments for COVID vaccines in New Jersey and Wendy, I assume that is for other people. And you've been helping out. And that is such fantastic work. It's unbelievable how complex this can be for people who are, you know, not used to using computers or using apps to schedule appointments. And I think we've been kind of lucky in North Carolina, that it's pretty simple here. Once your category opens. There's a lot more complex systems and other states that I've heard. So Wendy, thank you for doing that. Janice shared I have type two diabetes, but unrelated, I just had my 10 year check for thyroid cancer levels were undetectable. Always great to hear. Janice, thank you for sharing that. Lots of people also shared really great agencies and checkups. And I'm thrilled for all of you for that. And I hope you are just as happy in your lives with diabetes as you are with those numbers. You know how I feel I don't generally share numbers and tell me something good. But I really am happy for all of you. I know the hard work it takes to get there. Well, I know as well as a mom of a person with type one can know, right? I don't know the day in and day out work that you really are doing on an individual basis. So friends for life Orlando group, thank you for sharing all of your good news. I very much appreciate it. And I'll see many of you had the spring conference this weekend. I also want to share a little bit of good news about Benny: he has a job. I know Isn't he two years old still? Benny is now 16. He got his driver's license, and he has been really itching to get a job. He's got some projects he would like to spend some money on. And he just is an industrious kid. And you know, I think most 16-year-olds are ready to work. I certainly was when I was his age, and his dad was too. So we've been encouraging him. It's been very difficult, of course with COVID to find something safe. We've been mostly talking about like summertime jobs, but it happened pretty quickly and we got pretty lucky. He got a job at a local grocery store chain, just as North Carolina opened up to vaccines for grocery store workers. So the timing worked out really well. We were able to get him his vaccine. He just got the first Pfizer shot because he is 16 you can only get the Pfizer shot and he will start training and we are off to the races. So I'm really excited. I'm happy for him. I know that as soon as COVID is really over around here. I'm never gonna see that kid. I used to say as soon as he gets his driver's license, I'm never gonna see him again. Because he was busy before he could drive. I mean, obviously before the pandemic, but his junior year of high school is this fall and I think between sports that his job and social life Holy cow, it's gonna be busy around here who maybe he'll drop by for meals. If you ever tell me something good story. I would love to hear it. Please send them to me Stacey at Diabetes connections.com. Or you can always post in the Facebook group. I love to hear them.   Hey, before I let you go, Happy St. Patrick's Day. Now I know we're not Irish or even close to it. And I know St. Patrick's Day, this year is a different kind of celebration, like everything else because of COVID. But I bring it up because it's actually my first date-aversary Yes, I made that up with my husband Slade and I don't know if I've ever told the story before in the show. So I'll tell it now. Slade and I met at a TV station in upstate New York shout out to Utica, very small city in upstate New York between Syracuse and Albany. I was hired at WUTR. In December of 1993. I had been working here there and everywhere in radio in Westchester County, just grabbing some part time jobs where I could and then I got hired full time to do this TV job in Utica. And then a little bit more than six months later, I got a new job at WKTV, the other TV station in Utica, and my commute got five seconds shorter because it wasn't even across the street. These two two TV stations were on top of a big hill, and they were the only thing on top of the hill. So it was like parking lot building personal building. And I was hired away by WKTV to be their main anchor. And I could talk about that forever. It was such a fun time and really fun memories. But that's how I met Slade and we met pretty much in the summer of 1994. We were friends you know just like you’re friends with the people that you work with. But fast forward to March of 1995. Slade and I were in the St. Patrick's Day parade in Utica, because I don't know if this even happens anymore, but local TV stations will often be in the parades right the anchors will be in the truck and waving and that's it That was me like a dummy and Slade was driving and I was like hello People who I do I wait, what do you do? I mean, you feel like an idiot, you're not a celebrity. You're a local news anchor. So the whole time we were joking about it, you know, not insulting the people, they didn't come to see us, they came to see the other things in the parade, but just laughing at the ridiculousness of the situation. And we had a lot of fun. And that was in the morning. And in Utica, as in many cities, the St. Patrick's Day festivities tend to go throughout the day. So we kept running into each other at the bars and the parties and this that the other thing, and then a group of people said, Let's meet up for dinner. So I went home, you know, took a nap, took a much needed shower, went out to dinner. And as it had happened during the day, the group was kind of getting smaller and smaller and smaller. And then the dinner group said, Let's go to Turning Stone casino, which is a gambling establishment about 30 minutes away from you to go. So a bunch of us went and that group was smaller than the dinner group, but it was still pretty sizable and Slade & I had a blast. I love to play cards. That's another story. And I really enjoy casinos. And it's probably a good thing that when we moved to North Carolina 20 years ago, the only casino was like two and a half hours away in the mountains and is nothing special. I think they've improved it. But we've decided not to go maybe until we retire. Because we went to Turning Stone a lot. But I'm getting ahead of myself. So by the time that evening started to wind down there were three of us left me Slade and another guy who bless his heart, I think was kind of oblivious of the whole situation. And finally, Slade said to me, do you want me to give you a ride home? And I was like, yeah, I'm done. And we went out to breakfast, at one in the morning, and then he dropped me off at my apartment. And when he dropped me off, he asked me out on a real date. That date by the way was I think was a week or two later and we saw BB King in Syracuse and we went to the dinosaur BBQ for dinner beforehand. That was a great date. But my first real date with Slade, as I counted is St. Patrick's Day. So long story their long way of saying, gosh, we've been together a long time. I feel pretty lucky about that. Happy St. Patrick's Day, everybody.   All right, next week we're going to be talking about provention. Oh, this really is exciting. If you stick around till now I'm glad because provention. This is the company behind Teplizamub. Does that sound familiar? That's the drug that TrialNet and other studies have shown can prevent the onset of type 1 diabetes for up to three years. So far, I say up to but it's a three year study so far. So in this we're gonna go in depth who had worked for what it's all about. It's in front of the FDA right now. So this is a really interesting and exciting prevention treatment, not in mice, but then people will talk about that next week. In the meantime, of course, we'll have a classic episode in just a couple of days of please stick around for that. Thanks, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then, be kind to yourself.   Benny  47:52 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

When they're out of options, people who use insulin are turning to Go Fund Me accounts and other online crowd-sourcing ways of raising funds. Mutual Aid Diabetes (MAD) is a new organization that hopes to help. Their mission is "to ensure every member of the diabetes community has access to adequate diabetes supplies, medications, sustainability resources via facilitated peer support." This week Stacey spoke to Emily Miller, part of the leadership team at MAD to learn more. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcript: Announcer :05 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:11 Welcome to a bonus episode of Diabetes Connections, where we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. I'm your host, Stacey Simms, my son was diagnosed with type one more than 14 years ago, just before he turned two. My husband lives with type two diabetes. I don't have any kind of diabetes, but I have a background in broadcasting. And that is how you get the podcast. Today we're going to talk about something that is relatively new in the community trying to provide help for an all too common problem, lack of resources and supplies. It's called Mutual Aid Diabetes. I noticed this on Twitter late last year, I wanted to learn more about it. So I reached out. And Emily Miller, who is part of the leadership team at Mutual Aid Diabetes was kind enough to come on. Emily, I really appreciate you coming on and talking about this. Thanks for being here.   Emily Miller 1:01 Thanks for having me. I'm really excited to just kind of be able to share our story. Got it.   Stacey Simms  1:05 Before we talk about MAD or mutual aid diabetes. Can I ask a couple questions about you? You live with diabetes?   Emily Miller 1:14 Absolutely. I currently have type one diabetes. I was diagnosed when I was nine years old. And my dad actually was diagnosed with Type One Diabetes as well when he was about 19. So before I even had diabetes, it was like something that I even knew about, but I was diagnosed a little bit later in my childhood. And I have had it for going on about 19 years now. So I have to keep track via dates. But usually I don't think about it too hard. But yeah, about 19 years almost coming up in March.   Stacey Simms  1:45 How did you get involved with mutual aid diabetes? Were you part of the formation of it? Or did you get involved after it had already been around before I spotted it on Twitter?   Emily Miller1:53 Yeah. So I kind of came in, right before we had our like, first info session. Basically, during the pandemic, I had noticed a lot on Twitter and Instagram and like lots of different circles, basically, where mutual aid was popping up in different communities. So I live in West Philadelphia, you know, like Will Smith, all that kind of fun. Stacey Simms We all just sang it. (laughs) Emily Miller (laughs) It's no, it happens all the time. So I'm based in West Philadelphia. And there's a lot of mutual aid initiatives around here in terms of community fridges giving back in terms of financial mutual aid. And I love mutual aid, just because from the standpoint of asking a community what they need, and they give that answer back. And we're not turning it really into anything that's like part of the nonprofit industrial complex, or into charity or anything like that. So it's really a community meeting its own need. And as the pandemic really has gone on, a lot of diabetics on Twitter, although I'm sure some people know about the DOC, or the diabetes online community already, you know, the DOC really kind of started connecting a lot more people. And we've been doing this before pre pandemic stuff. But it was really a way for people to communicate and build that community that we don't necessarily have in our own lives. So I don't know how if your son experienced this at all, but when I was first diagnosed, my like pediatrician linked me up with another diabetic but other than her, I really didn't know any other diabetics, I just like, knew my dad. And so online spaces like Twitter and Reddit, lots of places like that have allowed for diabetics to kind of come together, domestically, internationally, to talk about these different issues that we're all facing. And so much of that is insulin pricing. At one point I had mentioned to one of my, you know, diabetic friends on Twitter that was like, Is there a fun that we can all just like dump money into and redistribute it? Because it seems like diabetics are just like sending the same $100 around to each other to fund these different things.   Stacey Simms  4:06 I just want to jump in Emily and stop because there's so much that has already gone by that I want to ask you a little bit more about. And this podcast audience is interesting in that it's very well educated, it is a little bit more well off than the general population. I don't say this as anything, then the demographics that I've researched over the years, and it is very well connected, as well. But I'm not sure that everybody who listens even knows what mutual aid is. And you talked about that. You have that in West Philadelphia, but it's not official, right? I mean, it is what it says it's people just helping each other. Right. This isn't a group or nonprofit called mutual aid. I just want to be clear about that.   Emily Miller4:46 Yeah. So the way that most mutual aid initiatives work is really outside of the scope of nonprofit status, or being an official organization. Different people will kind Have link up to mutual aid. And sometimes it gets formalized. Sometimes it doesn't, though. But I think a really good example of mutual aid that a lot of people know about is the Black Panthers. So back during the Civil Rights Movement, you know, they were doing a lot of community breakfasts and supply share, like helping people get medical aid, things of that nature. And that was really born out of the community of seeing the government didn't help us. And so we're going to help ourselves. And so I think for folks who are interested in learning a little bit more about mutual aid, it's basically reciprocal sharing of resources. So if one person can jump in and help this other person, they're going to do it. And then that way, if I ever need help, you know, I've kind of been able to prove that I can help out in some forms, and maybe someone's going to help me. And it's really knowing that like, no one dies today, or nobody is going to not get the care they need in order to survive. Because we are here to fill this gap that systems have created, essentially, we're going to fulfill the need, that systems that already exist have not been able to fulfill.   Stacey Simms  6:09 Yeah, and there's so much of this already going on in and I'll bring it in might sound silly, but what I know is the moms groups on Facebook and local groups, I run a local group in Charlotte of 800. Its parents, but it is mostly moms. And there is a week that goes by that someone isn't getting them in the car, driving insets sensors, quite often insulin, I've done it myself many, many times to other families and individuals. And I would assume that that's kind of mutual aid, even though we don't call it that.   Emily Miller6:38 I mean, that is that's mutual aid. You know, someone says, I need help, someone jumps in and says, I got that I'm going to help facilitate this for you. And I mean, same thing here, we, I think a lot of us in the community have been able to step up during this time of great need, especially when diabetics are at a higher risk for losing insurance during the pandemic losing financial support. It's just a time when more people need help. And so those requests are becoming more visible. And so now we have to kind of scale up what we're doing in order to make sure that people are getting their needs met. And I think that's something at the end of the day that I always think about is like how are we helping people? And how are we meeting those needs? Yeah.   Stacey Simms  7:22 Alright. So going back to what you were talking about. You said, and I think you're absolutely right on this, it seems like we're passing around the same $100 trying to help people mutually diabetes has been linking up to us from what I see, you know, GoFundMe and trying to find ways to get help to people who may not like I can't jump in my car and drive insulin to everybody. Tell me about the financial part of this. How is that working?   Emily Miller7:45 Yeah, so currently, the big goal really, for mutual aid diabetes, is to get that 501c3. So we can open up a bank account and really be that place where people can just like I said, dump funds in, and then start sending that out to people, we're in the process of obtaining that status. So while we're kind of working on our like 2.0 launch, which is coming up soon, we've created these other resources for people. So like peer to peer sharing methods, but like you were saying boosting GoFundMe is, but I think the problem of like the political side of mutual aid being like outside of the systems of governance, versus how we can help people in a way that doesn't put undue financial strain, or like running financial monetary donations out of someone's Venmo account, they kind of don't really sit together. So that's something that we've talked a lot about as like an organization of how do we get these two competing ideas and these two things that can both be true, and make sure we're honoring our community in the best way possible, while navigating, you know, the systems of, you know, the IRS and the nonprofit side of things, while also being true to our community. So, so much of the finances right now is like, if someone comes up and they have a little bit more financial resources, they're making that active choice to send that to someone's Go Fund Me, or something of that nature.   Stacey Simms  9:14 I have to be honest, you Emily, I'm a little confused and pardon my denseness on this, but I'm, I'm trying to figure out what is the conflict here? Is it an actual nonprofit organization in conflict with the mutual aid essence?   Emily Miller9:27 Yeah, I think that's a good way of putting it. So it's really about the whole core status of like, and I guess maybe that's not like the best sentence of like this, like the essence, like you were saying. So it's this essence of, we don't want to build a system that already exists that we know has not met our needs before. So a really wonderful, one of my favorite authors, Audre Lorde, said like the Masters tools will never dismantle the Masters house. I think that's a really good way of putting it of like if we just read create this system of how we get supplies to people how we get financial aid to people, we create this kind of dependence on like the mutual aid network. And just because unfortunately, the cost of insulin, the cost of supplies, all these things are so expensive. We are just by nature dealing with a higher amount of money than some other mutual aid initiatives are. So sometimes it's like, I've seen it in my local community fridges where if you have an extra $100, you can just like go to the store and buy extra gallons of milk, and I put it in the community fridge. But for diabetes supplies and insulin, it's so much more complicated, because you have prescriptions, you have doctors, you have insurance, you have benefits managers, you have the different companies that kind of run all this stuff. And so you come into all sorts of different ways of interacting with these systems. But if we don't want to emulate those systems by just becoming another pawn in it, and it's kind of trying to combat the idea of being a radical organization that's going to be able to support other people, but also not leaving anyone out. Because we've decided not to pursue c3 status, or a method through which we can't essentially like get funds in so we can then pay someone's copay off or someone's deductible things of that nature, it's just, it's a lot more thinking about the theory of it than I ever would have expected. But it's something where I feel really grateful to be able to bring that to the MAD team that at the end of the day, if we ever need to take a step back. And we need to think about like what we're going for, we have that kind of like theoretical and that like personal experience basis of it, where we can fall back on that, as opposed to just like, we have a bank account or something like that. So we were really trying to put the person at the center of it rather than the community. Rather than just like the organization.   Stacey Simms  12:02 It's so complicated, as you said, with diabetes, because we, like my local group is a great example, we will help each other because we kind of know each other, and we trust each other even if we don't know someone Personally, I've seen them in the group for a couple of years. I know their child has diabetes, right? I know that this guy who lives in next town over is in between insurance and need some pods or whatever, you know, so we get the stuff that they need. It's different somehow, when, you know, we know there is a need, but I don't know if I should donate to this guy's Go Fund Me. Of course, I don't know if I should donate to this other thing. But then there have been so many groups have tried in the past, or have had the idea in the past, I should say of, well, let's just fundraise. And then where do we give it it is so complicated, because of all the prescriptions and I'm just really echoing what you said. But I guess what I'm leading to is the question of, are you then this is a big ask. So I I'm not expecting a big Yes. But are you then trying to use mutual aid diabetes, to spread the word of what needs to change in terms of legislation and insulin pricing and all that stuff? You've already mentioned some politics?   Emily Miller13:03 Yeah, I think that's a great question. Because the existence of a group like Mutual Aid Diabetes by nature of just being a mutual aid group, it already shows that there's that gap in the system, like we were talking about. And so different people in the diabetes community, sometimes we call it like the diabetes, grassroots, essentially, you know, we know what skills we have. And so we can connect with each other, we can organize and we can talk about these different issues. Some people skill sets may just be better suited for mutual aid, some people might be a little bit better suited for like lobbying or things like that. But because we have these relationships to each other, that can inform how we use that information, to do things like lobbying, if we need to, or talking to elected officials, things of that nature. So it may not necessarily be like MAD’s wheelhouse, per se, to do some of that information. But just the fact that we exist as an organization brings awareness to that fact that the work that we do is because the way that insulin is priced in the way that supplies work is unsustainable for most people right now. And I think that's, it's a big, it's a big question of how do we link those things. But I think it is really important to talk about how the existence of something like MAD or different organizations and different organizations like the JDRF, or the ADA, or beyond type one, all these different things, what are their purposes within the diabetes community, because some of those organizations like JDRF and ADA and beyond type one, they talk about wanting to help people with getting assistance or making insulin affordable or making the best choices for each person's life, but by taking like insulin money and partnering with Big Pharma kind of defeats some of that purpose. So we're really here to kind of take that stance of like, we don't do these things, we don't take money we are buying for the community, we're trying to be inclusive of the whole community, all of these kinds of principles that we took a lot of time to think about. And just make sure that we are taking a stance that it can be done. And that as we kind of move along, you're helping people that we can meet the needs of the people who are essentially forgotten a lot of the time. And it breaks my heart that a lot of the time when we see these GoFundMe is, sometimes they have no money going to them, because people can't vet them. Whereas when I put up my GoFundMe literally a month ago to help crowd fund for health insurance costs, it got funded within six hours. And it's because I'm a vetted member of the community. But I take any of that surplus, I'm able to give that back to those people who have like $0 on their GoFundMe accounts, and I get DMS, from people all the time on Twitter of like, Hey, can you just boost this and it's the easiest thing to do. And by me boosting that, someone's able to get a little bit more visibility. And I think that's the great thing about Matt is that we have a little bit more visibility to bring that verification kind of in there. While also not being gatekeepers, we don't ask for proof of anything, but we do our best to make sure when we're meeting with people where we're trying to facilitate that need, we can talk to that person one on one and say like, what is the need here? How can we address this crisis? Are we doing crisis management? are we helping someone out to kind of feel more comfortable and asking for help these kinds of things. And the great thing about MAD, is that we just have so many wonderful people working in our community, you know, volunteers for MAD, a lot of them have so many different backgrounds, and so many different skills. So we have folks like medical social workers, people who work in ERs, but also people who just have a lot of experience in social media, or looking at like air tables or something like that. So we have all this different experience that we can kind of put together to make the most, I guess, facilitate as streamlined as possible, the aid that needs to be given to people.   Stacey Simms  17:16 What kind of response Have you all received Since launching on social media late last year?   Emily Miller17:21 Honestly, it's it's very surprising, I guess, for me, it's surprising because, you know, the communities that I come from, they tend to be really small and kind of insular. Sorry, I know where this is going. Yeah. And just to see the kind of outreach like, we had, I think 150 person limit on the zoom call that we needed, like for the intro session, and we maxed out and then so many people were like, how can I get this recording? How can we get this up there. And we're all behind the scenes, like typing to each other, like, have we finished the like closed captioning on this. So it's as accessible to as many people as possible, we just hit 1000 followers on Instagram the other day. And it just makes me really proud to see that something like mutual aid, which can sometimes be seen as this really radical sometimes divisive thing is being received and being really, you know, shouted out in the community. So it's really cool to see that. And just knowing that we've had a pretty amazing impact so far, just in terms of the people that we're reaching, and making sure that it is inclusive, and it is by the community, like I said earlier, because you know, it's Black History Month right now, I don't know when this is gonna go up here, being able to talk about the roots of mutual aid in black liberation, things of that nature. And to kind of connect with the community, in those respects, just shows that people are all while one, it can be a sometimes divisive thing. It's also growing a greater community. It's welcoming people in in a way that sometimes we don't always see. And sometimes we don't always think about when we think about diabetes. Yeah.   Stacey Simms  18:59 And I think telling the stories over and over again, really helps because you never know who you're going to reach. And I tell the story all the time. We are so fortunate, you know, we've always had great health insurance, I never had to give my son supply the second thought until the day that we needed more insulin than we had. And I went I'm like, Oh, I'm just in between, I'm sure I can get another vial and it would have been $300. And I was stunned. I mean, you know, everybody listening knows how but I had never This was several years ago, I had never encountered this. And my pharmacist was able to put through like a vacation or emergency thing or whatever. But that was the turning point for me. And I'm almost embarrassed to admit that it took that happening to me, for me to understand one of the big problems and then of course hosting this podcast and meeting a lot more people that really opened my eyes. But I do think it can take that moment of Holy crap, this isn't somebody else, and then seeing it happen over and over again and reading the studies of one in four people rationing insulin, which is probably more now because of the the health insurance crises we have going on in this country. So I'll get off my soapbox. But I want to ask you before and I'm going to ask you what you will need and want from my listeners. But Emily, I'm going to ask you, what do you do? What's your profession or your expertise or your interest outside of that.   Emily Miller20:14 So I am actually currently in, I'm a graduate student, getting my master's in clinical mental health counseling. And my, hopefully, my focus, once I graduate, is going to be on working in a trauma informed way with folks with diabetes, because so much of our community has had these experiences that are just incredibly traumatizing. So whether it's running out of insulin and not knowing where your dose comes in, or having a doctor tell you that, like, You're stupid, because you don't know how to give the right amount of insulin when your supplies aren't coming through or something like that. There's just so much stigma. And there's so much trauma involved in trying to manage an unrelenting disease like diabetes. So my goal once I, you know, finish my clinical practice, or practicum, and internship, all that kind of good stuff is to be a mental health counselor, for folks with diabetes and other chronic illnesses. Because I think that integration of mental health care and physical health care is just so important. And prior to that I had I have experience in social work. So that's my love meeting with people. And just like you were talking about those stories really are at the core of what connects all of us together. So when we can kind of sit down and talk about what did these stories tell us about ourselves? And how does that impact how we think about what's going on for us, whether that's diabetes, whether that's depression, anxiety, or you know, bipolar disorder, or Crohn's disease, anything like that, that narrative, as well as how we think about accepting that were the moral values we placed on these things can really have an impact on our mental health in day to day basis. So that's me. And it's funny, because I always joke that my classmates get radicalized on insulin pricing, just by being in classes with me. So I'm sitting there, and someone told me someone's talking about with managed care. And I raise my hand and I'm like, Can we like think about what it means to not have to think about insurance? And people are like, Oh, no, there, Emily goes again. Cuz all I talk about is like health care being a mess, I just wanting to change that. So that's me, outside of MAD, but I think it, it goes to show that you can sit down, and you can think about what your skills are and how they help connect people to other folks. And so I can take my skills in mental health and social work and apply that to mad by talking with people on a day to day basis about like, how can we get you help that makes it so that you have a more sustainable access to insulin over the course of the long term and things of that nature?   Stacey Simms  23:01 So what can people listening do? What you know, what kind of need can they feel for you? If they're interested in learning more? What should they be thinking about?   Emily Miller23:09 I think the best thing is that folks can do right now is just to kind of keep up with us as we're preparing to do our like launch 2.0, essentially, you know, we're working on making sure all of our systems for peer to peer supply sharing or peer to peer funds are as streamlined and not wonky as possible, I guess. And so just follow us on different social media. For right now. You know, we're pretty much Mutual Aid Betes Mutual Aid Diabetes on many different platforms on Twitter, Instagram, things like that. So just follow us for right now. And you can always if you need help reach out to us, I think that's something that we want to make sure everyone regardless of type of diabetes, regardless of any comorbid things that are going on for you, regardless of your you know, insurance status, or you know what your job is, if you need help, we're here to help you. So I think keep an eye out on our social media, we boost so many GoFundMe, so many requests for aid. And then when we have a chance to kind of launch, do our 2.0. And even when we get that c3 status, which is coming down the road as we keep taking those steps towards it, then, you know, there'll be so many more opportunities for folks to kind of jump in and help out when possible. And I think my last thing is just to consider that it takes a lot of strength and a lot of vulnerability to ask for help. So when someone asks for help, sometimes I just like to take it at face value and not have to go through like, why is that person asking for help? What's going on? I remember when I posted my GoFundMe, like a month ago to crowdfund for insurance. I was like, I was filled with so much shame and I was like, I shouldn't have to do this. And it made me so upset that I was like sitting here on GoFundMe, trying to fill this out. And this was after I got involved with mutual aid diabetes, I was like, it's gonna seem weird that someone who is a part of this team is already asking for help. But it just takes a lot of vulnerability and a lot of strength in order to ask for help. So I think if we can extend some grace and empathy towards everyone who's out there asking for help, I know we're going to see a lot of those requests, especially as the pandemic goes on. But just remember that it takes a lot of strength to be able to do that. And remember that we are here to help each other, what do we owe to each other, hopefully, it's that community feeling that you are going to be caught. If you fall, or if you if there's a crack, we're going to help fulfill that and catch you when you're there when you're at that low point. So that's my hope for people listening is that they can just remember to, to see each person as a person that is requesting some kind of help. And we're here to catch our community. And that way, you also know, if you need some catching, if you need some support, we're here for you, too.   Stacey Simms  26:03 That's great. Emily, thank you so much. I wish you all the best. Thanks for explaining this. And I would love to follow up down the road. And please keep in touch if there's any way we can help or get more information now please circle back.   Emily Miller26:13 Of course, thank you so much for having me. And for you know, just considering that mutual aid is a really important part of our community. Like you said, we're probably already doing it. So now you have a name for that thing that we're already doing. And just keep an eye out at Mutual Aid Diabetes dot com we’ll tap you in when we need you! Announcer 26:38 you're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  26:44 Lots more information, you can find all of those links that Emily mentioned, at Diabetes-Connections dot com at the episode homepage. And of course, there's a transcription. We started doing that last year. And I'm really happy that the transcriptions seem to be going over well, but if you'd like to learn more, all the links are there. And I just want to tell a story, you know, when Emily was talking toward the end there about how difficult it is to ask for help. It is such a sign of strength when people are able to do that. And I have a real personal experience, I'm not going to name this person or anything, but I have a friend in my local area, and her adult son has had a real issue with insurance and affording insulin for several years now. And because I run this big local group, it's not difficult for me to get what he needs. And you know, I don't know if it's because kids, you know, sometimes the insurance for children is better than it is for adults. But it just seems easier, right? When you're a parent, and you have a kid with diabetes, it just seems like it's easier to get insulin sometimes than if you're an adult, especially of a certain age, that weird insurance gap. So for a couple of years now, we've been doing this, and she asked me recently, and she said something like, you know, I can't believe you're still doing this for us. You know, I wish that he would get his act together. And she was embarrassed, she felt huge guilt. And I said to her, and I truly believe this, look, first of all, if it were my son, I would want the help. Second of all, you know, he's going to be okay, he's going to pick himself up and figure out what he has to do for work or whatever, at some point. And let's keep him healthy until he gets there. But truly, this is not his fault. In terms of affording the insulin, it is the healthcare systems fault. There was no reason for insulin to be as expensive as it is. And for him to jump through as many hoops as he has to and for her to feel like it's a personal feeling. I just think that encapsulated everything that you must feel when you're trying to ask for that kind of help. And I don't get you know, I don't get emotional on the show very much. And I tried to tell too many personal stories, but that really hit me because Come on, man. It's not It's not his fault. He is a person who was working. This is not some kid who is you know, laying on his couch and mooching off his parents. He just cannot afford what he needs right now. So it's one of the big reasons why I wanted to talk to Mutual Aid Diabetes and I'm hoping to kind of stay in touch and see where they go. And if you want to help all the information is there and you do with it, what you will, but I appreciate your listening here. So thank you so much as always to my editor John Bukenas from Audio Editing Solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.   Benny 29:16 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged

I overview 9 recent Daily Goody‘s from Oct. 23 - Nov. 11 (see list below). You can sign up to receive Daily Goody’s in your email every day or a weekly roundup. Sign up here. Daily Goody posts that I discussed in this episode: Why Pay for Professional Media Hosting Like Libsyn, Blubrry, etc.? Townsend Labs Sphere L22 Microphone Shure MV7 – New Microphone for Podcasting and Gaming The Way You Monitor Affects Your Production a Lot Podcast Audio Plugins – The Big List The Two Computer Settings Where You Need To Verify That Your Mic Is Active and Recording Properly Nasty Microphone Hum Noise From Old School Headsets Do Presentation Mistakes by Podcast Hosts Actually Draw Listeners In? FG-X Mastering Processor from Slate Digital Be sure to check out the Focusrite Scarlett series of audio interfaces, the world’s best-selling USB interface range with over 3 million units sold worldwide. Choose from 6 different interfaces with 1, 2, 4, or 8 microphone inputs. Works with the recording software you’re already using and works with any type of XLR microphone. New unique Air feature adds brightness and presence to your voice. Thanks to Focusrite for sponsoring this episode! Other Notes: If you ever have questions please reach out! The start date for the next PES semester is April 20, 2021 I started a community on Locals.com called Podcast Production. I’ll be publishing short videos where I screen share and talk you through various production processes including recording, cleanup, mixing tricks, plugins, and other tips, as well as personal messages from me pertaining to the business of podcast production. And there’s a bunch of podcasters on there already including Eric Hunley, Bryan Entzminger, Mike Wilkerson, Darrell Darnell, Bandrew Scott, Ross Brand, Roy Stegman, Heather Welch, Daniel Abendroth, the mighty Ed Sullivan, Leslie Martin, Paul you know who, Jason Sheesley, Jason Bryant, Carrie Caulfield Arick, John Bukenas. If you’d like to share this show with any of your podcaster friends, feel free to send them a message saying, “Btw, here’s a show about podcast audio production you may find helpful” with this link: https://podcastengineeringschool.com/subscribe/

She wore her insulin pump in the Miss America pageant back in 2014 and Sierra Sandison continues to advocate for people with diabetes today. In this Classic episode from June 2015, you'll hear from Sierra just as her book "Sugar Linings" is coming out. We'll catch up you on what Sierra is doing these days, her advocacy work and her accomplishments outside of the diabetes community. Article from DiabetesMine about Sierra's STEM studies & accomplishments Sierra resigns from Beyond Type 1    Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android   Episode Transcription Stacey Simms  0:00 This episode of Diabetes Connections is brought to you by Inside the Breakthrough a new history of science podcast full of Did you know stuff?   Announcer  0:13 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:19 Welcome back to the show. I always so glad to have you here. We aim to educate and inspire about diabetes with an emphasis on people who use insulin. I'm your host, Stacey Simms, and this is a classic episode which means for bringing back one of our early interviews, and this is one of the earliest my fourth episode, which originally aired in June of 2015. Sierra Sandison  is a big name in the diabetes community. You might remember her bursting onto our TVs and appearing all over social media after she won Miss Idaho and then walked across the stage and the Miss America pageant, wearing her insulin pump. She coined the hashtag Show me your pump, which continues to get lots of mentions today got millions and millions back then. I remember connecting with Sierra like it was yesterday, I was on vacation with my family in Isle of Palms, which is a beach near Charleston, South Carolina. We live in North Carolina, but believe it or not, the North Carolina beaches are generally further from us than the South Carolina ones. So we basically went to Iowa palms, I want to say almost every summer when the kids are growing up. And if you've read my book, that's where most of the bananas beach stories happen with Benny getting sand in his inset and all that stuff that I talked about. But we were leaving, we were just about to be on our way home. And I had reached out to Sierra, I don't remember who it was over Twitter or email, because she'd already been in the Miss America Pageant that had been the previous year. And I hadn't I didn't have the podcast in 2014. But she was talking about her upcoming book, Sugar Linings . And I thought this is a great chance to get her on the podcast. So I reached out and you know, had just launched I don't even think I was on Apple and the other apps yet I had launched the podcast on my blog for the first three or four weeks. And she reached back and said yes, and I gotta tell you, I was so excited. I remember, like the dork, I am high fiving with my husband, he was excited for me. And I gotta tell you, I'm still just as excited to connect with people and hear their stories. It's just a thrill every time somebody says yes, so I hope that never goes away. Thanks, y'all for letting me do this. I really appreciate it. And I'm gonna catch you up on what Sierra is doing today in just a moment. But first, Diabetes Connections is supported by insight, the breakthrough and new history of science podcast. It was created by SciMar, a group of Canadian researchers dedicated to changing the way we detect, treat and even reverse type two diabetes. The latest episode is all about how unpopular science can be very good science, Galileo probably comes to mind he was not exactly popular in his day. But there are a bunch of really interesting examples that they go through on this episode. Inside the break through you can find it anywhere you listen to podcasts. And remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. As I'm doing with these classic episodes, I reached back to the person you're talking to, to see if there's an update any information that they would like us to share and zero was kind enough to send me a message. This is five and a half years now after this interview you're about to hear and more than six years after the Miss America pageant, and she said that the main thing that she'd like to get across is that she has been trying to be much more outspoken about our advocacy efforts when it comes to focusing on insulin access and affordability in recent years, and I will link up another podcast She appeared on. She has been very outspoken about this and really trying to get information out there about better ways to advocate for lower prices and better access with insulin. She also says she is at Boise State studying mechanical engineering with minors in biomedical engineering and computer science. She was recognized as the number one student in her junior class. She's working on starting a 3d printing company and she is set to graduate next spring, Sierra, thank you for the update. You are absolutely remarkable. And obviously she's keeping quite busy. Here is Sierra Sandison  from July of 2015. Thanks so much for joining me.   Sierra Sandison  4:25 No problem.   Stacey Simms  4:26 It's great to talk to you. You have a new book, a new blog, we have a lot to talk about. Have you always been in pageants since you were a little girl?   Sierra Sandison    4:36 No, I was actually diabetes who got me in that got me into it. So at 18 I was diagnosed and throughout middle school in high school. I was bullied a lot I didn't really fit in. I didn't know what my identity was. I just like I just wanted to kind of disappear into the crowd. And this diabetes thing was another thing that the bullies could target and call it contagious and say it was my fault because of poor eating. How habits or lack of exercise, which weren't even like a part of my life. So it was ridiculous. But, um, I was just this. Just another thing on top of all the rest of the stuff that was making me different, that the bullies again, could target. So I get diabetes, my parents start pressuring me into training or into getting an insulin pump. And I kept refusing because like an insulin pump is a physical like external, very visible symbol of the fact that I have diabetes and   Stacey Simms  5:28 How old were you when you were diagnosed?   Sierra Sandison    5:31 So I would always like go to the bathroom to give myself shots and try to prick my finger. And, of course, that caused some problems, because I wasn't testing or bolusing when I was supposed to. Sorry, no. So   Stacey Simms  5:45 I interrupted when you were talking about your parents wanted you to get a pump. And I asked about your age only because that's a difficult part of life anyway. I mean, you're transitioning, you're trying figure out what college is going to be like, or what's next. And here your parents think put this thing on you?   Sierra Sandison    5:57 Yeah, exactly. And especially as an adolescent female, that struggles struggled with self-esteem, it was not something I wanted to put on my body. So then, a few months later, and by this time, I was either just about to graduate, or I'd already graduated. I can't remember. But I it was at the beginning of the summer, I heard about Nicole Johnson and the woman who directs the Miss Twin Falls pageant, which is my hometown, came up to me, and explained who she was and that her kids went to my school and she knew I had diabetes. And that she thought, I wouldn't want to know that Miss America. 1999 also had diabetes. And I thought that was so cool. So I go and Google Nicole Johnson. And here she is this beautiful woman. And she I found out she has an insulin pump. And up until that point, I thought that if I got an insulin pump, I would kind of disqualify me from being beautiful, because like, we are fed this definition of beauty, like we look at, we look at women on the front of magazines, and we compare, I compare myself to them. And I'm like, Well, my skin's not that smooth, and my hair isn't flawless like that. And this is not like this doesn't live up to that standard. And this doesn't live up to that standard. And none of them have an insulin pump. So therefore, that must not be beautiful. And now I see Nicole on Miss America, who has an insulin pump, and it's just like, super awesome. So I turned to my best friend that day at school. And while I was googling Nicole Johnson in class and I was like, Brittany, I am going to go to Miss America. And I'm going to wear an insulin pump. And she was like, I don't know what was going on in her head. She just looked at me blankly. But first of all, I didn't know what like how to use makeup or do my hair at all. I was totally, I was awful at everything I ever tried. So it was a struggle to find a talent. I'm not coordinated, like not athletic. Just like I just sucked to everything except for math and science, which didn't really help my popularity much. So I was just like, this dorky kind of nerdy person who always had a book and got made fun of so Britney is looking at me like, okay, like, whatever. But she was just like, what, like, the insulin pump is in like, the little machine your parents keep wanting to get and you're like, refusing to get it. And I was like, Yeah, she didn't. She didn't know where it came from. So then I go home and tell my parents, and they were like being the pageant like, Okay, if it's gonna get you an insulin pump, we'll get you an insert or like, we'll let you do the pageant and pay for this stuff. So Wow. So I compete in my first pageant. And guess what happened?   Stacey Simms  8:37 You won. I lost. So you lost, but that was not what I expected.   Sierra Sandison    8:42 Yeah, so I lost, which was discouraging, but I didn't give up yet. I go to this other little pageant. So I competed Emma's Twin Falls, which is my hometown, but there's also these other little pageants in the state that anyone from the entire state can compete in. So I went to this pageant that was open. That's what it's called when it's like, open to everyone. And there's four other girls were at Miss magic Valley. There's like 20 girls, for Miss Twin Falls, there's like 20 girls. And at that pageant, I won. So I was qualified to go to miss Idaho, and I was so excited. I was like, that was easy. Like, now I just have to win was Idaho, and I will go to Miss America. And so I show up at Miss Idaho, and there's 18 girls and the way Miss Idaho works is that Friday night, everyone competes. And then Saturday night, they read off the top 10 or top 11 and those girls compete again. So this year, they did a top 11 even though there's 18 girls, because I think they announced that they were going to do a top 11 before they know knew how many girls were competing. So Saturday night comes around and they read off the top 11 and I'm standing in the back with the bottom seven and it was so devastating because I at least if I didn't win, I at least wanted to make the top 11 and knock eliminated right away. So I got really sad and Brittany was like, Okay, how about this? How about you were your insulin pump wall like solving calculus problems, and inspire little kids that way? No, Brittany, I'm gonna wear my insulin pump on stage. But at this point, I kind of was giving up on the whole Miss America idea, which kind of made me like sad, but I realized that everyone in the audience would hopefully have I think everyone, everyone in general has an insecurity. Like I had my insulin pump and insecurity that makes them different that they sometimes want to hide and I really wanted to encourage them to not only like not hide it and tolerate it, but also to love it and celebrate it because it makes them unique.   Stacey Simms  10:46 So how many Miss Idaho pageants did you enter before the one we all saw?   Sierra Sandison    10:51 Yeah, so Okay, so I go home, and I compete for missed one falls. And this time, there's like, a gazillion girls, but I win it. And that was a little encouraging, because I just won like one of the hardest pageants in the state. So I, that's a, it's a whole, that pageant takes place, like a week after Miss Idaho. So I had an entire year until the next beside Whoa, I worked really hard, like, really, really hard. And I won't go into detail. But that's what made the difference between year one and year two, and I get to it,   Stacey Simms  11:20 I understand you don't want to do it. What are your work on? Is it just your is it just getting in great physical shape? Is it more to it?   Sierra Sandison    11:26 So that's part of it. But um, mostly it's really finding yourself and knowing what you believe. So when you go into interview, any question that's thrown at you, because you know yourself so well, like, you can answer it. And so I went to Okay, let's see, in December, Miss Miss Idaho, who was who won when I didn't make the top 11 challenged all of the local title holders to a new year's resolution. And I was about to go backpack through Europe for five months alone, which is a self discovery journey in itself. But I everyone was doing like, I'm going to work out more, and I'm going to eat less candy or something. And I was like, I'm not going to give up carbs. Exercising in Italy, like are you crazy. So I knew that we couldn't be fitness based. So I decided to read one book a month, which I've actually kept up to this day. And it's just taught me so much. But and then of course, we have the Europe thing. And like traveling in Europe alone for a long time. Just to traveling just teaches you a lot. So that's what I changed. So I get back to miss Idaho. And I really, I bow so I decided to wear my pump on stage. This is the first time I'll ever wear on stage because I hadn't more I will only wanted to work at Miss America where I could explain my story on TV into the media stations beforehand. And everyone would understand what the insulin pump was as well as my message. So I'm beside Whoa, there's a small audience. There's no type one diabetics watching. And I can't go out on stage and be like, Hey, everyone, like this is my insulin pump. And my message is for you to love the things that make you different. Okay, bye. Let's get on the show like that. So I get to miss Idaho in my pump, I put my pump on my pants. In that day, it just looked so much bigger than normal is like when I got a zit on my forehead and it looks like I'm so I'm trying to talk myself into wearing the pump and I'm, like freaking out. And finally I calmed down and I'm like, no one's gonna notice no one's gonna notice. So   Stacey Simms  13:27 why did you Why did you wear it on stage? And what was it like, just before you walked out? If that wasn't the plan, what happened that you said, All right, I got to do it.   Sierra Sandison    13:35 Um, so I didn't think I was ever going to go to Miss America because of the not making top 11 thing so but I really I got into pageants to where my pump on stage. And I wasn't going to give that up. Even though it wasn't the Miss America stage in front of millions of people on national television. I still wanted to know that I had the courage to do it. Um, so I walked out of the dressing room. And this little girl's staring at me and I met this in this like really self-conscious state like, no one look at my insulin pump, please. And the first thing she blurts out is like, hey, what is that she points to my insulin pump. And my heart sinks and I get really angry at the same time when I go back to the dressing room to kind of rip off the pump. And she's and she follows me and she explains that she's diabetic as well. And we get into the conversation about diabetes. And I end up asking her What kind of insulin pump she wears. And it ended up that she didn't have an insulin pump because she was really scared of what her friends would say. So at this point, I was like, I don't care what the judges think. I don't care what the audience thinks I'm gonna go where my insulin pump for this little girl and so that weekend I ended up winning and her mom came up to me and are her McCall is a little girl and her mom came up to me and Nicole was like, I'm getting an insulin pump. Oh my gosh. Oh my gosh. Oh my gosh. And then her mom after McCall ran off to tell some other friends how excited she was. Her mom came up to me crying because she's so excited that like she never thought her daughter would get an insulin pump agree to it. let alone be jumping up and down excited and confident about it. So that was probably the best. And then, of course, from there, I went to Miss America and made tough teen and yeah, yeah, there's   Stacey Simms  15:10 a lot more to talk about. Yeah, I have to ask you, though, it's just so inspiring to hear. But when you walked on stage, and you've been in pageants for a couple of years, harder to wear the pump, or harder to wear that bikini, because Wow, did you look gorgeous? Oh, my gosh, that was so hard.   Sierra Sandison    15:28 I actually have I so I, I work out a lot. And I like, I do CrossFit all the time. And I competed not now Geez, not now. But I competed in, like, power competitive powerlifting, or I guess that's redundant powerlifting competitions. So I was used to like being in like one piece, or just a sports bra and shorts. So that's like being in the bikini, scary for a lot of people. But it really wasn't that big of a deal for me until I put the pump on. So when did you realize that the pump   Stacey Simms  15:59 and the pageant was becoming an actual movement, you know, that people were responding so strong.   Sierra Sandison    16:06 Um, so I posted the picture online. And I kind of, I don't know, if some girl a lot of girls tried to start social media campaigns for their platform, and they just kind of flop because no one's really interested in them, if you know what I mean. So I was really scared that no one would like, like my message or because some people were telling me like, like fighting the beauty standards is stupid. And it's a stupid cause. But it's something I'm really passionate about. Because when I see someone like loving who they are, even though they don't look like a Victoria's Secret Angel, it really like encourages me to love myself. And so I really wanted to encourage that. But I also didn't think that anyone would take the time to take a selfie with their insulin pump. I don't think I would, I don't know. I just like, so I posted it. And then I went on with my day. And I got back to my phone. And it had like 1000s of likes, and 1000s of shares. And I went on Instagram, and people had been posting like crazy. And it was like it was incredible. So I think that like the same day or maybe the next day, I realized it was going crazy. It was awesome.   Stacey Simms  17:15 Do you have any numbers? Or do you know how the hashtag Show me your pump? How far or wide that went? I mean, I know you were on the Today Show. And good morning, American NPR picked it up?   Sierra Sandison    17:24 Yeah, I think so we, we did the math on the hits. And like number of viewers on all the TV shows and all the articles that were written. And we think my story reached about like five to 7 million people. And then as regard in regards to how many pictures were posted, you can't count those on Twitter, or Facebook. But on Instagram, there's almost 6000 today.   Stacey Simms  17:50 So the social media campaign is going on in the time between Miss Idaho leading up to Miss America. Was it difficult to balance getting ready for the pageant in September of last year, when you were also being asked to be a guest on national shows and little kids are coming up to you? What was that like?   Sierra Sandison    18:06 That was insanity. So I was actually the last girl. And out of all 50 states, I was the very last person crowned. So I had only eight weeks to get ready for Miss America, which is an insanely short amount of time. So I was super stressed. I was up like, from 8am to like, probably 1am. And it was just it was insane. And then you add all the interviews on top of it. And it was so overwhelming. But in the end, I think it actually helped because I was practicing interviews part of Miss America. And obviously, when I got to Miss America, the judges already knew about Show me your pump. And it was a big topic of conversation in the interview. And I had talked about it so much that I didn't have to stumble over my words, I knew what I wanted to say, etc. So having all those interviews with the media, which there could, there was like five, there could have been like five to 10 a day. Having all those interviews actually helped me prepare a little more even though it was a little hectic.   Stacey Simms  19:06 Okay, so you won the People's Choice Award in the Miss America Pageant. How do you find that out? Is that in a live on stage thing? Yes. So   Sierra Sandison    19:12 I just find it out when like live TV, I find it out as soon as you guys in the audience and across the nation do so that was what was that like it was I think I knew that I kind of had a chance. And in the past, I've tried to predict like the Miss America winters at home. And the way you predict the People's Choice person is by looking at the YouTube views and I was not winning in YouTube views on the People's Choice videos. So I was kind of stressing about that. And I really just I really wanted to wear my insulin pump on stage in my swimsuit. And that's all I wanted to do. I just was like make it to the top of team and then you can eliminate me Please give me People's Choice, please. And at the last minute I think Miss New Mexico had just like a rush of votes and my heart just like   Sierra Sandison    19:59 it's New Mexico.   Sierra Sandison    20:01 Yeah, my roommate and like one of my best friends. But I was like, No, like, this can't happen. So when they called my name, and I don't know, I'm used to like losing things in high school like being the last one picked for dodgeball team making, not making like even the JV team for basketball. So I was like, it's not gonna be me like, I'm used to this. And then he said, and you're the winner is Miss Idaho. And that's all after that moment. That's all I remember. Everything else is a blur. I think I fell down to the ground. And like, I don't even remember, his   Stacey Simms  20:33 pictures are pretty amazing. It's a wonderful reaction. I love it.   Sierra Sandison    20:36 So So what happened for you when you did go on stage? Oh, my gosh, that was the most amazing feeling because I know like, it just seems I don't know how to explain the stage like especially the same was with Dr. Oz, like the Dr. Oz studio was so like, exactly like it was on TV exactly like it is on TV in the Miss America stage is exactly what it is on TV. Except I can also see like, the tent, like the audience of 10,000 in this gigantic, gigantic room that's like a football stadium. So it was it was thrilling. And I just couldn't believe that I finally, like I reached my goal. And it was coming true right there. And I don't know, it was awesome. Fabulous.   Stacey Simms  21:19 It's really is a remarkable story. I'm so glad to share you what is next for you, you have a new book out, you have a new blog you're launching, tell us what this is.   Sierra Sandison    21:28 Yes, I'm so excited. So I've had this idea for a while. And like, finally, my friend was like, do it. And I don't know, all authors are a little self conscious about getting your ideas out there, because who's gonna read it, like, Who cares what I have to say, so my best like one of my, I call her my diet bestie one of my diet besties Hadley, George was just like, you need to write it. So I sat down in Cincinnati, probably in February and started writing. And I've been, like, just rapidly writing way since then. But it's called Sugar Linings , finding the bright side of type 1 diabetes. And for me, diabetes has been a huge blessing, obviously, because of Miss America and all the opportunities it's brought me but I there's also things I also thought that before I really succeeded in pageants. So the other things I talked about, besides my own personal story are Sugar Linings  that apply to everyone's life, not just inside the house. So I talked about how diabetes makes us more stronger and resilient. How it can bring us friends. So like Hadley, Hadley is like one of my best friends and I would not go back in time and get rid of diabetes, if it meant losing her friendship, and then how it can give us a passion. So lots of people get diabetes and then become very involved in fall in love with JDRF, or whatever diabetes organization they decide to volunteer with. And the same is true for a lot of other hardships, I think we face in life, whatever thing you go volunteer for, usually people have like a very personal story of why for why they got involved, and why they became passionate about it. So and I think being passionate about something. And making a difference is a really important, like part of all of our lives, like when I go to schools, a lot diabetes, and at the end, I always close up with whatever hard thing you're going through, like use it to make yourself stronger, and also make a difference. And I asked all the kids like who wants to make a difference before they die, and everyone's hands flies up. And it's just like, so encouraging to know that, like most humans just have this natural desire to make a difference. And diabetes gave that to me, and I hope it can give it to a lot of people. But if someone for example, isn't isn't like passionate specifically about diabetes, even though they have it, the last chapter in my book is about how it does increase our ability to show compassion, empathy, so we know what it's like to get misinformed and hurtful comments and just deal with this disease and the stress that goes along with it all day every day.   Stacey Simms  23:54 The book is called Sugar Linings . And the blog is also Sugar Linings . But the blog is a chance for other people to tell their stories.   Sierra Sandison    24:02 Yeah. So I'll also continue telling, like continue updating people through that blog on what I'm doing and what's going on in my life. And maybe if I discover a new sugar lining, I'll talk about it. But I really wanted to give other people the chance to tell me about how it's made them stronger about their like diversity about how diabetes gave them a passion to serve the diabetes community or maybe a situation where their diabetes experience gave them empathy for help them be empathetic towards someone else. Or if they have some sugar lining that is maybe unique to them or maybe true for everyone that I just haven't thought about. I didn't mention my book, but that they want to let the diabetes community know. So we can add another sugar lining to our list.   Stacey Simms  24:51 I have a couple of questions that I was asked to ask you. If I may, when people found out I was talking with you. Rebecca would like to know how you deal with the down days when having diabetes on board just feels like it's it's too much to handle.   Sierra Sandison    25:08 Yeah, so there's two things. One, I think the hardest week for me was actually that time where I was visiting Hadley in Cincinnati, and she encouraged me to start writing this book. I think my pump like malfunction, so I was like, Hi. And then when I got like, they got my new pump to me super quick, which they're, they're awesome about that. So they got into come to me, but I'd been high for a little while. And then I got my new pump on, and my insulin had expired, because it had been in like the heat. So then I was high for another four days before I figured that out. And I was just like, Oh, it was miserable. And I had like five schools every day that had to go to the speedway. And at the same time, I was kind of going through this identity crisis, where people tell us over and over again, like, diabetes isn't who you are, it's not part of your identity, like you're so much more than your disease. And here I am, like, I am the diabetic beauty queen like that is my identity to most people. And I was kind of feeling guilty, like, should diabetes, not be my life, like, I'm so involved? Should I, like get involved with something else and not do diabetes? Does that make sense at all? Oh, absolutely.   Stacey Simms  26:19 I think it's difficult for any of us to find a balance.   Sierra Sandison    26:21 Yeah, I was like, Oh, I felt just felt like it was overwhelming my identity. And Hadley has an organization called type one teens that she started. And she like, she came into my room because I was crying. And I kind of opened up to her about it. And I felt so so guilty about feeling that way, like feeling like, I shouldn't be serving the diabetes community. And she's like, Oh, my gosh, I totally know how you feel. And she kind of made me feel like, it was just a natural feeling. And she's always the person usually, she's always the person I go to when I'm having just like the down days. So first of all, I use my diversity to get over him and or to get through the down days. And then second of all, something that's really inspirational to me is when I meet people who have lived with diabetes for like, 30 or 40 years, and like I'm, and that wasn't in 2015, like, they didn't have a Dexcom they didn't have like an awesome touchscreen insulin pump from Tandem. They had, like, the like, we hear horror stories about what like the diabetes products they use. So like if they can do that with those. With those, I don't know what to call them. The   Stacey Simms  27:30 The, the bad old days of diabetes, right? I mean, the old tools like boiling needles, that kind of stuff.   Sierra Sandison    27:35 Yeah, do 40 years, and most of those years have the old diabetes tools, and they have way less resources and dealt with a lot more misdiagnosis and misdiagnosis sees, is that the word? And we do today like I can do today. I'm curious   Stacey Simms  27:54 with what you just said, Do you have an obligation to always show your pump? I mean, I'm curious, you know, you're the show me your pump lady? What if you don't feel like showing your pump? Does that come into your mind?   Sierra Sandison    28:04 So it is totally okay, if anyone does not want to show their pump. And I had to come to terms with that this year, because I get like, I'll post a picture where my insulin pump is like tucked in my speakeasy and I'm wearing a dress. It's totally not visible. And some mom will comment and be like, Where's your pump? Like? My Are you hiding your pump? Like I don't want my daughter to see this. And I'm like, they don't say that word for word. They'll say where you're pumping, where's your pump, but that's like, how I feel when they say that. And it was really hard for me for a long time. Because like I'm a human being I don't want I don't want diabetes to be the forefront. Like I said, like I struggle with that identity thing like is diabetes like, like a whole, like 75% of my identity now, and I don't want it at the forefront or like in front of everyone all the time. And at the same time. I'm not ashamed of it. But I just don't want it to be the topic of discussion constantly. And Kerri Sparling, who's the blogger in charge of six and tomie.com. just posted she went to like a red carpet event with her husband. And she posted a blog about how she the dress she got just like she there's no way to make it look great with an insulin pump. So she decided to take off her insulin pump and do shots for a couple days. And like, that's okay. And I I commented. And I was like this, like means so much to me. Like, I feel like I'm not allowed to hide my pump. And it's not that I'm hiding it. It's just that I'm not. I don't know, I'm not like purposely hiding it. I just like don't want it front and center sometimes. And I met her this last weekend at a conference we were supposed to speaking at. And she was like that I'm just like, so that comment just warmed my heart and I'm like, you just need to know that it's totally a natural feeling to not want to show your diabetes all the time and like I don't care what your fans say. Like if you need to hide your pump once in a while. Like you should feel okay to do that. So with that, I mean you're you know, show me your pump is wonderful and empowering but it doesn't mean you have to wear it on your head. Yeah.   Stacey Simms  30:00 Michelle asked me to ask you, if you have advice for parents who are struggling to give their kids with diabetes independence.   Sierra Sandison    30:07 Hmm, that is so hard. That's like, I always talked about this at conferences, and I haven't, there's no perfect answer to it. But I do think a balance is really important. Between like, keeping your kids safe, and making sure you're empowering them and giving them independence at the same time. And I think with so I didn't get diabetes till I was 18. So I was immediately independent, and that was fine. But in everything else in life, my parents were really, really strict. Up until the point I was 13. Like, the most insanely strict parents you'll ever meet, and then back by, like, at 13, they decided to like start. So and this is all they're like, they had this all planned out in advance, at 13. When each of me and my siblings, my siblings, and I turned 13. They started like, slowly, carefully, like making letting us be more and more independent, and at the same time, instilling like adjectives into us, like, you're so responsible, you're so intelligent, you are so like, independent, we're so proud of you. And even when those things weren't true, like those statements were definitely not true throughout most of my high school, but they kept instilling them in me. And eventually I was like, Yeah, like, I am responsible, like, that is my identity. I'm, I'm smart, and I'm responsible. And I'm not going to make this bad decision   Stacey Simms  31:23 theory this, your book is launching, this is a very busy time for you. What are you most excited about?   Sierra Sandison    31:28 Oh, my gosh, I am excited, huh?   Sierra Sandison    31:32 I Well, I'm   Sierra Sandison    31:33 most excited, I think so a lot of girls, when they hand down their crown, it's a really bittersweet time, because they've been so busy all year, and they're exhausted. So now they're gonna stop. But at the same time, they kind of don't want to stop. And for me, I've like figured out the balance. So I'm not exhausted, and I'm having a blast. And there have been like, back in like, January and December in November, I was exhausted. And I was like, holy cow, I need, I cannot do this. So I kind of like learned how to say no to things so I could survive. And now I'm at this perfect balance where I'm not too busy. And I'm really enjoying it. But if I was anyone else, I would have to stop on June 20. And because of Show me your pumping because of the awesome diabetes community I've been, I've been I have like events booked out and conferences to go to, until like December right now, which is super exciting. Because I don't have to stop like being decided, oh, I'm not allowed to wear the crown. I get to do everything else that I love. And I'm not really I'm kind of like a not a girly girl. So I don't care about the crowd anyways, but people still can try it on. So   Stacey Simms  32:34 literally, you can bring it with you. But you can't put it on.   Sierra Sandison    32:37 Yes,   Stacey Simms  32:37 exactly. All right, the next interview is going to be all of these pageant rules, because I didn't know any of this stuff. Yeah, that's terrific. So you can so so you know little girls or even the girls like we could put it on and take a picture with you. Yeah, that's great. That's great. Sarah Sandison , thank you so much for talking with me today. It's been so much fun and the books gonna be a big success. I hope we talk again soon.   Announcer  33:04 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  33:10 More info on Sierra and what she's doing now and then taking a look back at her story. You can find all of that at the episode homepage at Diabetes connections.com. I mentioned towards the beginning of the show that she's focusing a lot on insulin affordability and access. And she stepped down a while ago from her position at beyond type one, she was in a kind of a volunteer leadership position there and stepped down over this issue. How you might have seen that on social media A while back if you didn't, I will link up again, the more information on the story behind that and so much of what she's doing now, really just a remarkable person. And of course, I'll link up the information on her book Sugar Linings . Alright, I am working on a bonus episode that might come out in the next couple of days. I have an episode about mutual aid diabetes, this is a new group that has sprung up recently trying to kind of organize and get better information out to the community about a problem that again, insulin affordability and access but it's something that many of us are already doing in our local communities, right getting insulin to people who need it at least we do that in in Charlotte, I mean, I've hopped in my car several times in the last couple of months and careered you know insulin here there and supplies and things like that. And I bet you have done that too. Or at least connected on social media or amplified some mutual aid diabetes is trying to be more organized about that. And our next regular episode is all about low blood sugar. I am talking to two powerhouses of the diabetes community ginger Vieira and Mike Lawson and we will be talking to them about their new children's book but really about low blood sugar what it feels like what people without diabetes who care about people with diabetes should keep in mind all that good stuff. Question for you before I let you go too many episodes. What do you think? Right? We're at two episodes a week now with these classic episodes started that back in February and throwing Get a bonus episode and my overwhelming you. You don't have to listen to every episode. I hope you don't feel guilty if you don't, but I'd love to get your opinion. What do you think here? Is this the right balance? Should I cut back? Maybe go to one episode every two weeks space it out a little bit more? Let me know I'll put it in the Facebook group as well as a question for you. Thanks as always to my editor John Bukenas at Audio Editing Solutions. Thank you so much for listening. I will see you back here in just a couple of days until then. Be kind to yourself.   Benny    35:34 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged  

The Wanek Family Project is an ambitious project to find new ways to treat, stop or prevent diabetes. The researchers who work there are also figuring out how to define what we all mean by cure. City of Hope (recently renamed Arthur Riggs Diabetes & Metabolism Research Institute) announced a six year plan to find a cure for type 1 back in 2017. This week, Stacey talks to Dr. Bart Roep about their three top areas of investigations and explains the thinking behind that "six year" announcement. In Innovations, rumors on a new smart watch with built in glucose monitoring -  hope or hype? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcript Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:21 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:27 This week, an ambitious project to find new ways to treat stop or prevent diabetes is also figuring out how to define what we mean by cure,   Dr. Bart Roep  0:37 the ultimate cure is stopped insulin injections, which is of course something I can just promise at this stage that I won't stop until we have a conference there. So that is the only promise I can make. But that is high bar. But we can also think of a cure to stop the disease process the immune response destroying beta cells, right? Because with that we we preserve a source of insulin.   Stacey Simms  1:02 Dr. Bart Roep is the director of the Wanek family project to cure diabetes at City of Hope. He's going to give us a lot of information about their top three areas of investigations, a lot of which are going on right now some of which need your help In innovations, rumors about a new watch with built in glucose monitoring no needles, hope or hype? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am only so glad to have you along. I'm your host Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. You know, my son lives with type one, my husband lives with type two, I do not have diabetes, but I have a background in broadcasting. And that's how you get the podcast. I was looking back, like so many of us are doing right now at march of 2020. And by this time, a lot of you had actually probably already begun staying at home stay at home orders. I believe it started in some states that early. But we had a lot going on in early March last year. And I was looking at the calendar to confirm this. But this really happened. I moved the first week of March, I spent one night in my new home. And then I went immediately to a JDRF conference the very next day, I had to pack my suitcase before I moved that I knew I would have my suitcase and my clothing in it for the conference that was in Wilmington, North Carolina. And that was March 6, seventh and eighth that we were all there at that very last JDRF conference locally in North Carolina that we all went to. I came back on Sunday, I moved a bunch of furniture around Well, my husband and my son moved the furniture, we hung some stuff on the walls on Monday, Tuesday, the 10th. One year ago to the day of this episode being released, I took Benny to his last scheduled physical therapy had knee surgery in 2019. And that was his last PT. And then a couple of days later, we flew my daughter home from college. And that was it. That was March 14 for us 2020 that we battened down the hatches. And for us all of this started. So here's to better days ahead. Look, I know it's still not easy, but I've seen many of your photos getting the vaccine. And I have to say I have a lot more hope than I did a couple of months ago for sure and even a couple of weeks ago. And hope is really the through line of this episode. And not just because the name of the organization has hope in it. You know, I mentioned City of Hope just a few weeks ago here on the show talking about their reverse vaccine trials. And then they reached out to me to come on the show and talk more about that and what else they're looking into. But they actually have changed their name recently. They're still on a mission to cure diabetes. We will talk about all of that in just a moment. But first Diabetes Connections is brought to you by Dario health and bottom line. Look you need a plan of action with diabetes. We have been lucky that Benny's endo has helped us with that and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. There are published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one see within three months and a 58 decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management go to my Dario .com forward slash diabetes dash connections for more proven results and for information about the plan. My guest this week is Dr. Bart Roep the director of the Wanek family project to cure diabetes at City of Hope City of Hope very recently changed its name to the Arthur Riggs diabetes and metabolism Research Institute. In honor of its longtime director and research pioneer Riggs scientific achievements include developing the technology that led to the first synthetic human insulin, a breakthrough that enabled mass production of insulin. I use the the words city of hope and Arthur Riggs diabetes Institute kind of interchangeably here, they had just changed the name, I think two weeks, maybe even one week before this interview, but many of you know that name, City of Hope, because in 2017, they made a big splash with an announcement about funding a project to cure type one. As you can imagine, a lot of eyebrows went up, including mine. And we talked about that in the interview, I am actually going to come back after the interview and talk a little bit more about the coverage of Dr. Roep refers to it and I just want to link it up and call your attention to some things. What's going on here is that they have started a six year program with the goal of finding a cure. And we're just past four years into it. Dr. Roep has been researching type 1 diabetes for more than 25 years, he is passionate about serving this community and ultimately finding a cure. Dr. Roep, thank you so much for spending some time with me. I'm really interested to learn more. Thanks for jumping on.   Dr. Bart Roep 5:55 My pleasure.   Stacey Simms  5:56 Let's just start with some of the basics here. If you don't mind, you're the project director for the one family project for type 1 diabetes. Can you tell me a little bit about what that is?   Dr. Bart Roep  6:06 Yeah, absolutely. This program has been made possible by a wonderful gift from the Wanek family that allows us to do really novel, innovative out of the box, things that are all targeted to cure type one diabetes. So there's a very tight timeline, it's a six year program, we just entered year five, and we try to really cure diabetes in completely different ways. Because like you and all the stakeholders, I've been disappointed with the success of the current types of therapy. So it's all about curing type 1 diabetes, in close collaboration with one family and other corporate partners. And we're now at the harvest stage. So we now have a couple of programs that are really exciting and innovative, that are trying to really embrace the immune system and not suppress it and trying to cure diabetes. Stacey Simms I know that we could take any one of those programs, and probably spend more than an hour talking about each one of them. Can we kind of go through a little bit about each? Dr. Bart Roep We think that the immune system of a person with type 1 diabetes is the one that a cancer patient is craving. So we think it's the best immune system in the world. And but it comes with a price because even some of our own tissue may sometimes be attacked, like what happens in type 1 diabetes where the source of insulin, the beta cell is destroyed. But I think it's actually with good intentions, because I think that the immune system is looking for this trust issue. So we have come to appreciate that it is actually not a mistake of the immune system, it's actually probably a mistake of the beta cell, and the immune system is responding to it with good intentions. And that changes the entire paradigm, we believe that immunotherapy alone will not be enough, you must make islets happy again, because that's the provocation of the immune system. And maybe that alone could be enough to deter the immune response. And then the way that we try to do this is with a soft touch. So we want to negotiate with the immune system, we want to teach it how to do it right. Whereas all the therapies tested so far, have been trying to suppress the immune system. And as an immunologist, I think that is awful. And working in a cancer center, I know that this can cause cancers. And certainly during times of a Corona pandemic, the worst thing you can do is suppress the immune system. So what we want to do is do it very selectively and do do targeted, in a sense, it's kind of precision medicine, where we just want to treat the problem with type 1 diabetes and read the liver rest of the immune system in these and fight cancers and infection. That is what they all have in common. And that itself is already, you know, completely new and some people call us crazy. And the type of ways we're doing it, we have what we call an inverse vaccine. And we add inverse because normally people think of a vaccine that is meant to activate the immune system to fight virus or cancer. And we do the same, but we inactivate the immune system, but very selectively only to the vaccine that we get, which is a beta cell vaccine. So that's one. And the second one is that an all of this is actually coming from cancer therapy, what the breakthrough was that we genetically engineer the soldiers of the immune system, we give the cancer specific receptors, which then attack the cancers. And that has been a breakthrough in cancers. But what we want to do is exactly the opposite. We want to take the negotiators of the immune system, give them the new receptor, so they go to the islets and negotiate with the immune system. Try to do it right. That's what we call the Car T program. And the third one is is really become one of my favorites. And that is the very, very first therapy that's actually on the one hand trying to make beta cells happy again. And on the other hand, you know, redirect the immune system modulate the immune system. And that's done with one and the same product. It's an antibody that is already extremely successful in psoriasis and is now tested in, in arthritis graft versus host disease and transplantation or even in COVID. In extreme cases of COVID, it helps to moderate the immune response. And we have given that particular antibody a backpack with a growth factor that makes islets happy again. And the beauty of all of this is this backpack is only opens at the site of inflammation. So it the antibodies delivering the growth hormone for beta cells only where it's needed, namely, any inflamed islets. Now, when I say it's already started smiling, because it sounds almost too good to be true. And when that's the case, you probably are on the right track. So those are the three programs that we have. On top of that, we have a program from Dr. Riggs, the founder of our institute and major benefactor. And that has to do with dealing with complications of disease. So we have a molecule that we know is, is very effective in reversing and preventing neuropathy, one of the complications, diabetic complications, and we're trying to get that product also tested in in the diabetes arena to see whether we can prevent or reverse diabetic complications. But the other three are intervention studies. And what they also have in common is that they are also the first to really do personalized medicine in the sense that we've come to understand that every patient is different, the moms were right, we should have listened to them. And so we get that now. So we have drugs that we can give either 10 years before or after diagnosis before it's more difficult to find but after it's very easy to find, because that's where the majority of our stakeholders are. And we have drugs that we would probably reserve for the medical emergency of the diagnosis because they're a little bit more aggressive, a good come with some more risk. And we have products that we could give at any stage, like the antibody therapy, the bionic as I call it. So so that is also completely new. Now I'm really excited and proud of this program. And we were so eager to test this in the clinic and the one that is in the clinic is the vaccine, which is probably the weirdest of all   Stacey Simms  12:27 I'm gonna stop you right there. I'm gonna stop you right there because I want to, I'm glad to hear you say that. Let's go through these three main programs, as you said, because the inverse vaccine is really how we got young the program this time around because I was talking about it a couple of weeks ago and realized I hadn't had anybody from City of Hope from the Arthur Riggs, diabetes and metabolism Research Institute, as it's now called on the show. So let's talk about where you are in the inverse vaccine. Because at that time you were looking for people to be in the trial, are you in trials? Okay,   Dr. Bart Roep  12:59 we are we are still recruiting. But we need you know, for these types of trials, especially at this early stage, we need to be very picky, which is the worst thing you can do to a patient. But we need really need to find exactly the right patients. So we already did one trial, where I'm from the Netherlands as my accent probably is, is disclosing, and we did a trial there in patients that had, on average, about 12 to 15 years of type 1 diabetes just to see whether it was safe and feasible. And just to explain what we do, we takes immune cells out of the patient that we treated in the lab with vitamin D. That's a magic bullet. And then after a couple of days, we add the vaccine, which is a piece of proinsulin, the precursor of the hormone insulin, and then we inject it back into the patient under the skin. So those cells will directly swim to the pancreas and the islets and the draining lymph nodes and do their do their magic because it's truly magic. What what's happening there. And the strange thing is although I told these patients, the volunteers in the Netherlands not to have any expectations in terms of benefit. Three years later, they are all time low there HBA1C they are difficult age, they're in the mid 20s. Usually. And you know, there are an HBA1c of 6.2. And you know you as a mom will know that that is something or you count your blessings. So it may actually be that 10 years after diagnosis that could still be a benefit of just re educating the immune system. And what I love most about it is the legacy. We do two injections Prime members just like with COVID vaccinations, and then with time they get better. How awesome is that? Right? So it does look like this could be a disease modifying therapy. Now it's very early on. So that's why we now do a face to trial while actually Phase One B trial, I should call it, it's still to do with safety, but now in patients that still have plenty of beta cells, because that's the other novelty. And we now know that most patients still have beta cells, but certainly in the first five years after diagnosis, they are functional and make insulin. So that is the group of patients that we want to test now to be more certain that we can actually preserve that beta cell function and preserve a source of insulin in those patients. So   Stacey Simms  15:28 yeah, in those patients that have the 6.2 A1C, as you had mentioned, I assume though, they're still using insulin for now.   Right back to Dr. Roep answering that question in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke Hypopen comes in. It's the very first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give Gvoke correctly. I'm so glad to have something new, find out more, go to Diabetes, Connections comm and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon dot com slash risk. Now back to Dr. Roep answering my question. Were all those people who are doing so well on the studies still taking insulin.   Dr. Bart Roep  16:34 They are. And that is why, you know, we also like to test it sooner. But how important is it to finally also address our attention to people with established disease, because all the other trials so far have always been limited to very newly diagnosed disease or just before diagnosis. And the vast majority of patients and you know, one of them, they have disease. And people always thought that there is nothing we can do. And it's game over. And that's wrong. Most patients have beta cells, and they may not function. But you know, the first thing to do is to avoid that they keep being attacked. And then with other therapies, making islets happy again, we may get them back into action. And I just believe that what we have done unintentionally, perhaps is that we did both, we stopped the immune response, we stopped the inflammation and maybe that itself with time is enough to have those beta cells come out of hibernation. So that is the working model that we have with that particular therapy. And we have to confirm that that that earlier observation, which is extremely exciting and a small group of patients will hold in California.   Stacey Simms  17:46 Yeah, no, that is that's great. The second study that you mentioned, was this the bone marrow or was it you say it was used in cancer patients? Can you talk a little bit about that   Dr. Bart Roep  17:55 both of these other therapies aren't directly taken as lessons from cancer therapy. You know, 10-15 years ago, we were treating cancer by resection surgery, chemotherapy, radiation. And nowadays, it's all immunotherapy. And one of the reasons why I joined city of hope is that I can learn from the cancer, the oncologists how to treat cancer in a personalized way. Because we also know now that even breast cancer is not one disease, it can be dozens of different flavors that require different therapies and sometimes only very mild. And that's what we want to do in type 1 diabetes as well. Except when we do that, we want to do the complete opposite. So because if you suppress the immune system, you get cancer and some cancer patients that are treated with immunotherapy to cure the cancer, they get type 1 diabetes, so it shows that you have to do it very sophisticatedly. That's what we try to do here. So in cancer, we engineer the soldiers of the immune system, what we call the effector T cells. And in type 1 diabetes, we do the cells that are normally regulating the response to empower them to regulate inflammation, but only there where it's needed because I want them to fight COVID I want them to fight cancer. So So it's the same principle, but in the exact opposite direction.   Stacey Simms  19:19 So where do you stand in terms of those studies? Are you doing clinical trials right now? Are you still in the research phase?   Dr. Bart Roep  19:26 Yeah, well, thanks to this wonderful Womak family gift we have in two and a half years and that is really I know we are spoiled with COVID right where it was less than a year, but they got billions. We did it in two and a half years. And we are already knocking on Heaven's Door. We are starting our negotiation with the FDA to test it in the clinic. These are such obvious therapies and also they are soft touch right? It's the patient's own immune cells and it's not the effect this is not the soldiers as negotiators and everyone sample the vaccine has vitamin d3 for crying out loud as the magic bullet, right? I mean, this is also a mellow, that we hope that we can convince the FDA that we can move fast. And we can avoid being misled by mouth studies and so forth. I don't want to cure mice, I want to cure patients. So these therapies have all that going for them. So so that's why we have a very fast track. Thanks to all the knowledge that was already there from cancer, except that we tweak it all we had to do is give it a little tweak.   Stacey Simms  20:32 I'm hesitant to ask this because I don't want you to make promises. But what is the goal of what you're talking about? I mean, I love how it sounds. But is the what's the outcome supposed to be is? Is it actually a cure? Is it better control with insulin? What what would the outcome ideally be for these studies?   Dr. Bart Roep  20:48 That is the most important question to ask Stacey. And I thank you for this because the worst we can do is raise false expectations. So we really have to think about what we call a cure. And it's different things for different people, the ultimate cure is stop insulin injections, which is, of course, something I can just promise at this stage that I won't stop until we have accomplished this. So that is the only promise I can make. But that is a high bar. But we can also think of a cure to stop the disease process the immune response destroying beta cells, right, because with that, we we preserve a source of insulin. And with other therapies that we are using in type two diabetes, what can get them back to work. So that is one, of course, improving the quality of life, if you have a source of insulin, the probability that you get complications, including hypos, which most patients experience, that is also then pretty much a cure too. So there is all these different definitions of a cure. And, and for me, as an immunologist, the first thing to do the low hanging fruit is that we stop the immune attack. But that's not good enough, the next step will be to get therapies to get hibernating beta cells back to work. And in the worst case, in end stage disease, new sources of beta cells are important. And I'm also involved in various kinds of beta cell replacement therapy. And also as part of the Wanek family, we have been working on different kinds of stem cells, including those from the patient's themselves, to turn them into insulin producing beta cells and make that as a source. But that is, that's a long story. That is not what we can deliver in the short term. In the short term, we may be able to succeed to stop the disease process, which is that's a breakthrough. If we can do that.   Stacey Simms  22:42 What would that look like in somebody who lives with type one right now? What would stopping the disease process mean? But would that be something we have to interfere immediately upon diagnosis? Or would it have an effect on somebody who's lived with it for five or 10?   Dr. Bart Roep  22:55 Well, the point is, is probably most easily measurable, early, after diagnosis. But that has made some people misled to believe that it can only be done at diagnosis, I think that you have to be more patient to see efficacy. When you use those therapies later on, as we did with the adverse vaccine. I mean, we already completed the trial. And we were writing the paper. And we just thought, Let's try one more blood sample Three years later, so we invited the patients back in. And that's when we got this surprise that they actually had a fantastic glycemic control. So that is just a gentle reminder that we don't, we should not be too impatient and just give people diabetes a chance to recover and do this. And some of those therapies actually have a legacy we have the antibody that we're using in with the backpack to make islets happy, again, that actually has had two cases now, where only after three years, the patient's became insulin independent. So that is really bizarre. It's unpublished. So you also have to be careful when you say this, but you know, I put my head on the block here. Now you're on my stakeholders, you deserve nothing but the truth in a very early also. So that is already amazing by itself. But what I find most striking in this process is that it took a couple of years after we stopped the therapy, that this was going to happen. And that probably tells us that we really just changed the cause of events that we really, you know, interfered in the disease process. And the body has an amazing regenerative capacity, right. I mean, we I think we have largely dismissed that. But our body can really regenerate amazingly well. And that is something that, that we now need to see whether that holds. And it's as I said, this is brand new data, some of it I could not even dream could happen and I'm always be bad for a setback as you always must be. But all the surprises we've had until today were favorable. That scares the hell out of me. No, seriously, I'm, I'm with you there. If you are the world's worst diabetes mom, I must be the world's worst diabetes doctor because I've been working on this for 30 years. And only recently, we started curing people, but we have cured people. In fact, one therapy that in cancer is very common and we have done 16,000 of those at City of Hope  is bone marrow transplantation that has been done in type 1 diabetes also. And lo and behold, there is three of them. And I saw them because I went to Brazil, I want to see it with my own eyes. I'm as suspicious as most of you are. And so they're real people. They're bonafide type 1 diabetes patients 15 years later, they don't need a drop of insulin. Now, that is an exciting result. But we should also realize that the other 27% of the cases, other 27 cases, in time relapse, they still need less insulin. So that is promising. But it doesn't work for everybody. But I only need one case, one case where we have pure type 1 diabetes, and we can talk to the regulators, the FDA, the the sponsors, pharma, that is is not impossible. When I was starting, I was not even used to us allowed to use the C word, the cure word. And I still think it is an inflammatory word, right? Because so many of us have been disappointed. And so many of us have given up on this. And, and I remember the talk I gave in Santa Barbara for the JDRF. And about my plans. That was a few years ago, we just started and after the talk, this wonderful old gentleman walked up to me and I said, Doctor, I've had disease for 62 years, and I thought, oh my god, I could get how much I failed. And all those years, people talked about the cure, and I thought oh, I did it again. I upset people. And then he said, but this is the first time I actually think you know what, there might be something out there, you know, so we really are getting closer, we just need to understand that the disease much better. And the new insight that it's not just an immune problem, it might not even be in the mistake of the immune system that is already making us much more focused on what the problem really, really is. And try to deal with that.   Stacey Simms  27:32 I want to get more to the cure language again, before we end. But when you're talking about the three people who really seem to be cured in what did you say, Brazil? How do you as researchers, and how to more researchers and more countries look at things like that and say, how do we replicate that here? Is it a question of more funding? Is it a question of research? You know, how do you share more success stories like that to see if it can be replicated?   Dr. Bart Roep  27:56 That is such an important question stays in the point is the first response a scab says right? I don't believe it. And that is a very healthy, very healthy default when you hear this type of thing. So that's why I went there. And I did studies with them. I said, Okay, give me those blood samples of those patients. And lo and behold, with my techniques to measure islet autoreactive T cells to ultra active T cell that we believe are causing disease, the levels of those diseases predicted so even before therapy, whether a patient would relapse or remit. So that's already pretty amazing. So that that made me think you know what, these guys could be onto something. But the reality of where most of us agree, at least for type 1 diabetes bone marrow transplantation is maybe a bridge too far. In cancer we don't. So I also think it is a little bit in the eyes of the beholder. If you have a very young child with diabetes, sometimes the prognosis of having cancer is better because we do stem cell therapy in cancer and they work and they cure people forever in cancer. So why not give a young child the same good start in life and kids do really well with these types of severe interventions, their immune system is extremely capable of recovering and for the record, we used the patient's own bone marrow right it wasn't even from a donor. So basically, what you do you take out some of the blood stem cells and then the bad part starts then we start to erase the hard disk of the immune system of the patient including the mistake that alter immune response and then we give it back the blood cells to have it recover. I use it as what we call a proof of concept it can be done so can we now find a way that we can do it in a less risky way because certainly in in the US you have all kinds of liabilities for the record that was an American company, pharmaceutical company, that better trial in Brazil so that that's a little bit telling, but it also shows that these are Really, you know, bonafide organizations behind this investigation. So that can be done. But there are other examples that are maybe less spectacular. But there are interesting cases where we have trend started to treat with new kinds of drugs that actually treat the beta cells that have got people in complete remission. And my worst struggle, if I may, which we just published this month, is where we did still transportation for crying out loud. So we took stalls, so we, you know, poop with all the little bacteria in there, and kind of refreshed our intestinal biome, and it had spectacular impact, all the patients in the in the treated arm actually made the same or more insulin, believe it or not a year after diagnosis, whereas normally, with time you make less than you need more insulin. Sure, right. Sure. So that already shows that this can work.   Stacey Simms  31:00 You know, one of the things that came to mind when I when we set up that I was talking with you, one of the things I wanted to address, and you've touched on it already, and I appreciate that is this talk about cure, because in 2017, when the Wanek family made this enormous and incredibly generous donation of $50 million to City of Hope it came with a I'll call it this, because it's just what it seemed like from the press releases and everything I read a promise of a cure in six years. Well, I read that. Well, wait a second, I read that at the time. And I thought these people are wonderfully generous. But this doesn't help anybody by putting it into these terms. So I'd love to know what the you already started to answer. So I should let you go. But why do that? What kind of pressure does that put on you folks?   Dr. Bart Roep  31:48 You know what, let me first speak for the family. They never put those words out there. They their ambition, and it's a high ambition is a cure, right? They have type 1 diabetes in the family. And they are as disappointed as all of us that we're not there yet. So they wanted us to be focusing on the cure and do it in different ways. Because so far, it has been pretty disappointing. Okay, so that is the family's perspective. Then the other point is, you have to have an aggressive timeline, because that forces you to focus and to kill some darlings along the way, but only take the best of the best to take that forward. And that's where the six year came in. Now, I was asked disappointed with the marketing communication and journalism that says a cure in six years, because that's not the same thing. It's a six year project aiming to cure type 1 diabetes, and that has started to live a life of its own. So that being said, That being said, and that should never have happened. And I am with you, when you say don't raise false expectations, let the data speak. I'm completely with you that. But what it did do is it added the sense of urgency that we have at City of Hope to work fast. And that in itself is not a bad thing. And to put the bar high. And also make sure that you don't get distracted with some side products that might not be delivering that fast is not a bad thing, either. So I actually think it helped me pretty much to really, you know, don't take a lot of vacation and really work. Get it there.   Stacey Simms  33:27 The way you phrased it made such a difference to say a six year program to find a cure is so very different from find a cure in six years. So I really appreciate you kind of going through, you know, clarifying that,   Dr. Bart Roep  33:41 well, let's get the record straight there. And that's exactly the way it is. But having said that, I don't mind curing diabetes in six years. I just wonder why I should not do it in two years instead, you know, I mean, that it's okay to just throw everything aside and put all your energy and money and whatever into trying to do this because I was a skeptic. I honestly 30 years ago, I started to study islet transplantation to show why this was such a bad idea because basically you give the immune system new islets to be destroyed. And I unfortunate was right in many cases, but I was also wrong in some cases where it worked. And that got us the opportunity to to learn why it works, when it works and why it fails when it fails. So that was a huge leap into getting to understand the disease and understanding what is important and and what is useless. So that that's one thing. But now I'm you know, I'm reaching, you know, the fall of my career. Now I really want to cure type one diabetes and now I really want to have people to just say okay, here you go, give it six years and we'll see where it ends. And to be quite honest, two of these products were not on the shelf when we propose to the family to support us, they actually were part of the seeds of funding the capital, that allowed us to work really fast. Normally, when you ask for funds from the NIH or JDRF, because you're being judged by your peers, your enemies, your competitors, you better be darn right and have 60% of the data before you even get a shot at it. And in this case, they just trusted me on my brown eyes to just go ahead and do stuff. And and as business people who want a family, they're the founders of Ashley furniture as business people, they understand that you can fail, but it's our obligation to fail quickly, so fast and learn from it. And of course, there are always failures. But those days are often more more valuable than some of the small successes. So So this as a model, I think has been proven extremely effective. And we the one, the one thing you have to be very good at. And that's the most difficult part is triage, you know, govern this. So you have to tell your dearest colleagues or closest colleagues, you know what that was a great try that let's try something else. Or, you know, let's move in a different direction, that is something that is the most painful thing to do. And unfortunately, that had to happen to and that's not something many of us are good at doing.   Stacey Simms  36:23 Before I let you go and we start wrapping it up here, you don't have a real personal connection. In other words, you don't have type one, no one in your family has type one. But I imagine that as you've been saying, for 30 years, you've been working in diabetes, you've got to feel like now you do have a personal connection. What does this all mean to you after all these years,   Dr. Bart Roep  36:41 I think that this has been destiny, to be quite honest. And Roep in Dutch actually means calling in a way. So there is something when I was a medical student in the late 80s, let's say I did it straight after kindergarten, I was so upset that all the therapies we gave in type 1 diabetes, were palliative care, that they treated the symptoms that didn't treat the cause. And I at that stage, and it is absolutely a true story. I thought this cannot be right, I cannot be a fulfilling doctor. By just treating the symptoms, we have to understand the disease. And that is when I started to be more interested in the cause of the disease. I must also add to this I'm emotionally incontinent. So I really could every patient that I saw, I brought back home, I could not let it go. So I will be a horrible doctor crying all the time with the base. And so probably this is a win win for everybody. But But that was the moment where I really started to say, listen, it has to be a type 1 diabetes, and everything in my life is now type 1 diabetes. So I'm always saying I don't have it, but I'm living it.   Stacey Simms  37:52 Well, thank you so much for sharing all of this information with us. We really just scratched the surface. I hope you can come back on as these studies progress. And you have more to report and give us an update.   Dr. Bart Roep  38:02 Oh, absolutely. Because that would mean that recent updates. Yes. No, no, I owe you daily. And I'm so grateful for all the patients for bearing with us and giving us the benefit of the doubt and I keep on working until we have something I won't rest before them. That's solemn promise.   Announcer  38:27 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  38:33 Much More information at the episode homepage, just go to Diabetes connections.com, as always, and we will link you up with much more information on the Wanek family project on the center itself. And any of the research that they're looking for recruits. If they still need our help, I will link that up as well. So just want to take a quick moment here to talk because Dr. Roep brought it up about the coverage of the cure language from back in 2017. To his credit, Dr. Roep in the articles from back then is really trying to say what he said with me. He absolutely admits that six years is a goal. He calls it a goal, not a promise. He says if he knew what needed to be done, he would do it in one year. But he is really optimistic about the pathway that City of Hope laid out and just what he said in the interview that you just heard. The issue here seems to come from quotes directly from the one family the incredibly generous and well meaning Wanek family, the family behind Ashley furniture. So Todd Wanek had been giving some interviews at the time, and he doesn't stray from the six years will have a cure. I have faith in them. They are very dedicated to doing so. And I mean if you look back diabetes, mine has a great article on this and they say they really, really pressed on this and they just kept saying we have confidence. So I have to say that while I get what Dr. Roep is talking about there. I think those of us who were very I'll say skeptical back in 2017 were not wrong to be I don't think it was out of line to Be and I do worry that when they set timelines like this and then do not reach them, maybe they will. But if they do not, does that discourage other people from investing in cure research. And as Dr. rib said, What cure means may vary. So look, I just wanted to circle back on that I will link up some of the articles from them. So you can see for yourself, you can certainly google it up as well. really fascinating, really great research. I mean, he listed so many things there that are happening in other countries and other theories. And it's just amazing to think about, and I'm very optimistic, but I don't like I was never told when Benny was diagnosed five years to a cure. And I think never having been told that changed our outlook and made us more optimistic. I don't know, what do you think we'll be polling about that in our newsletter? I want to learn more about this. And I'm gonna be talking about it in the Facebook group as well. All right, let's talk about innovations coming up. And I'm a little bit on my soapbox about rumors and news and the difference. But anyway, we'll talk about that in a moment. Diabetes Connections is brought to you by Dexcom. It's hard to remember what things were like before we started using Dexcom. I mean, I haven't forgotten, but it is so different now is what I mean, when Benny was a toddler, we were doing something like 10 finger sticks a day, even when he got older, we did at least six to eight every day. I mean, they were scheduled and you know, when he wasn't feeling well or something was off, we would do more. But with every iteration of Dexcom. We've done fewer and fewer sticks, the latest generation the Dexcom G6 eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about Benny's little worn out fingertips makes me so glad that Dexcom has helped us come so far. It's an incredible tool. Benny's fingertips are healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions, learn more, go to Diabetes connections.com and click on the Dexcom logo.   Innovations this week, let's talk about an innovation that I think is all hype. But hey, you never know maybe it's real. A couple of weeks ago, I saw a bunch of headlines. They were mostly in the tech world hadn't made it over to the diabetes reporting. Yep, about the next generation of watches Apple Android watches that might include glucose monitors, I kind of hand wave that away. because there wasn't enough real information from these groups to even warrant a second glance, it was things like might happen could happen, hearing rumors, that sort of thing. But just in the last week or so I've been seeing more diabetes news sources, and more diabetes bloggers talking about glucose monitoring in the next generation of watches. Is this really coming? I gotta be honest with you guys. I do not think so. What touched off this whole thing was a report out of South Korea, which I still have not seen translated into English. And as I do not read Korean, I have no idea what the report says I don't think many people who are reporting on it know what the report says. But it basically seems to indicate that the series seven Apple Watch and the Samsung Galaxy watch four will feature continuous glucose monitoring, they say no blood sampling, it will use an optical sensor, it will be advertised to people with and without diabetes, that's important. We'll come back to that. And this will be somehow infrared sensors. So look, the first thing to keep in mind is if this is going to be advertised to people who use insulin, it has to have FDA approval, you cannot get FDA approval for something like that between now and later this year. If they haven't done any clinical trials, it's not going to happen. So I can't imagine that this is something that if real is going to go to people with diabetes, somebody without diabetes, you want to kind of maybe know sort of what your blood glucose is? Sure, I could see that. But how accurate is it going to be? I mean, we really have no idea because I haven't seen any research on this. I know that there are some people out there who have been citing a long ago studies and talking about the Glucowatch, which I know some of you longtime listeners used but I covered this I covered the glucose much back in the 90s when I was a health reporter, and it burned people. So we know it's not going to be that I hope anyway, look, I'm not critical of the organization's for covering this story. I am a little miffed at the headlines, because the articles are all great. The articles are all saying that this is something that we're hearing about, we don't know could it happen, other people quoted who are saying why it can't happen and the complications and the things that I'm saying about clinical trials, but the headlines have been all this is coming these watches to include glucose monitors. I haven't seen many headlines that have said probably not or don't get your hopes up. Like it says, what would you click that I guess that's not clickbait. This is why I'm not that great at social media. Anyway, sorry, a little bit of my soapbox here, because I think this is just setting up people with diabetes for disappointment. And before we move on from this, I should say that I saw a lot of comments on social media about that. There are several systems like this in development, you know, bio wearables that there's a lot of stuff coming like this. That may be the case. But a couple of years ago, there were a lot of companies excited about contact lenses that red blood glucose. So just because you can show me a company that is trying to venture capitalize its way into this space, doesn't mean I'm going to get excited about a new device will eventually come. Yeah, I think it absolutely will. I mean, who knew we'd be talking into our watches my dad talks into his Apple watch like Dick Tracy, if you told me that was coming 10 years ago, I mean, right? It's coming, but it's coming this fall. Outlook unlikely. Alright. It was kind of a pessimistic innovation segment, but we will bring back Tell me something good and more innovation stuff in the weeks to come.   Hey, before I let you go, just one funny thing during this taping, here, I heard Benny's insulin pump beeping, you do not know why. And I probably won't find out. And I got to tell you it is very weird to be 14 years into this probably the first 12 where we did almost everything for him. Yes. Even into middle school, I was doing a lot more for him than maybe the average parent. But hey, you do what's right for your kid. And I gotta tell you, it is strange to hear the beeping and know that he will take care of it. I can't believe how little I do for Benny's diabetes these days, when your kids diagnosed at two. There's not a lot of fun of independence at that age. And we didn't push him to be super independent. Although I that's kind of a lie. I mean, I say did everything for him. But when he was not at home, he could do everything. So we gave him a lot of freedom. And he was going to friends houses in first grade. He was doing sleepovers when he was eight years old. I sent him to camp and on diabetes camp for a month. So I take that back. But what I mean is when he was old, we did a lot for him. I remember checking his blood sugar, you know, he just stick his hand out when he was in like seventh grade when he was home and thinking to myself, when is this going to end but knowing because I got great advice from you guys not to push him and lo and behold, I do nothing. I do some nagging. That's not gonna change. But that beeping just reminded me a little idea. I'm here if he needs me, and he noticed that. All right, thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.   Benny  47:17 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.

Right now, the very first diabetes technology with roots in the do-it-yourself community is in front of the FDA. Tidepool CEO Howard Look joins us to talk about what, if approved, will be a prescription mobile app controller: Tidepool Loop. We get details on the submission, including everything from how you’d actually get this app to whether you’ll be able to set your own blood sugar target ranges to which devices Loop could work with, international possibilities and much more. Learn more about Tidepool Loop  Our first conversation with Howard Look from 2016 Howard announces Tidepool will shepherd Loop to the FDA (2018) Howard mentioned Tidepool documents. Find those here In Tell Me Something Good a teenager with type 1 has a big idea about a Funko Pop character and some positive news for diabetes camps this summer. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android   Episode Transcription:  Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke HypoPen the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:21 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:26 This week, the first Do It Yourself based diabetes tech goes to the FDA. We will get details on the submission of Tidepool Loop  , including everything from how if approved, you'd actually get this app to whether you'd be able to set your own blood sugar target ranges,   Howard Look  0:43 we did  in our submission to the agency proposed flexible set point. We are in review right now. That is something new, and most companies before us have submitted with fixed set points or a limited set of set points. That is something that we are discussing with the agency we're not yet cleared, so I can't tell you how that discussion will go.   Stacey Simms  1:05 That's Tidepool CEO Howard Look. He also answers questions about which devices this version of Loop  could work with, international possibilities and a lot more. in Tell me something good a teenager with type one has a big idea about a Funko Pop character and some positive news for diabetes camps this summer. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show always so glad to have you along. We aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. My son was diagnosed with Type One Diabetes just before he turned to my husband lives with type two diabetes, I have a background in broadcasting. And that is how you get the podcast. This week's subject is one that a lot of you are really excited about. I was going to say it's something that you've been waiting for. But I know a good portion of my listeners are part of the we are not waiting movement, and are using a DIY version of Loop  already. For those who are not. What is Loop ? Well, that's a big question and I will direct you to a bunch of our past episodes. With the we are not waiting hashtag you can just go to Diabetes connections.com there's a search box on the upper right hand side of the website. And I have put all one word hashtag we are not waiting as a search term for any episode that deals with that with the DIY community. Of course, you can also Google Tidepool Loop  , that sort of thing. But as simply as I can try to define it here, Loop  is one of a couple of programs created by the community. This is not something that's commercially available, and it helps insulin pumps and continuous glucose monitors communicate. DIY Loop  uses a Riley link another external piece of hardware to help with this. And it works with Omnipod and older Medtronic pumps. There are other programs openAPS Android APS, which work with older Medtronic pumps. That is a very quick and very light to say explanation of it. So I urge you if you're interested, although Howard always does terrific job of explaining more when I do talk to him here, I just want to make sure that you understand kind of all of the groundwork, this is not something that have popped up in the last couple of months. In fact, in late 2018 Tidepool , which was well known by then as a nonprofit, open source, a call it an information hub for people with diabetes, they announced they would shepherd DIY Loop  through the FDA making it a lot easier for non diy yourself types to access what is really life changing technology. And now just over two years later, they've submitted and I don't know if an information hub is the best way to describe Tidepool , but it was started because there was no place at the time to view diabetes data in one place, I don't believe there really is still you can see data from your pump, your CGM, your meter all in one uploadable place and use interactive graphs and see trends and patterns in a way that was never available before. And I don't think it's available as robustly anywhere else. And then you can share with your healthcare team and invite other people and your healthcare providers to look at your charts and your graphs and your data. So that's how Tidepool s started. And if you want to hear the whole story about how they stepped up to take this new task on, again, I will link up these specific episodes at the homepage for this one at Diabetes connections.com. By the way, this is also a video interview, you can check that out at the Diabetes Connections YouTube channel, I'll put a link in the show notes there as well. I do want to give a quick disclosure here. I did a project for title in the spring of 2019. I was helping out with some research interviews in the community, that sort of thing. I bring it up because they paid me as a freelancer. And while they've never paid me for the podcast, I think it's important to always let you know about that kind of thing. By the way, I'm very good at community interviews and freelance projects like So reach out if you ever need a hand. Okay, Howard Look in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And you know, almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. Gvoke is the first auto injector to treat very low blood sugar. Gvoke hypo pen is pre mixed and ready to go. With no visible needle. That means it's easy to use, how easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk.   My guest this week is co host Howard book here to talk about the very exciting submission of a Loop  app to the US FDA, there is so much to talk about here. But Howard, let me just first welcome you to the show. Thanks for coming on.   Howard Look 6:05 Hi, Stacey. It is so great to be here. I'm so excited to see you again. And so grateful for you having me on your show.   Stacey Simms  6:12 Thank you. You know, it's funny to look back. And we have a lot to talk about. But I should say as we're getting started here, I have talked to you many times, but twice for the podcast and the first time was almost five years ago now. So as we go through this conversation, and as you're watching or listening, there's gonna be a lot of presumed knowledge, I think we're not going to try to explain everything. So I will link up the previous episodes where we talked about title and it's early days, and then the announcement a couple of years ago about this. But I think that even just a quick, cursory Google search will get you up to date before you listen to the interview. But there's a lot here. So Howard, thanks again. Let's dive right in. My   Howard Look 6:52 pleasure. Thanks for having me.   Stacey Simms  6:53 What did you all submit? Tell me about what actually went to the FDA.   Howard Look 6:58 I have learned more about how FDA submissions go than I ever imagined my whole life. So we submitted what is known as a 510 k application, which is a big set of documents that says to the FDA, here's what we have built. And here's how we built it. And here is the work that we did to show clinical evidence to show software cybersecurity, what's called verification data, how we know that the software is working as intended. It describes what it looks like, how it works, what the requirements are. And all of that ended up being about a 2000 page submission, which sounds like a lot, but I've heard that other submissions are far far bigger. So we feel like it was a well crafted submission. And we are now in the thick of what is called FDA interactive review. So we sent in our submission on December 17. Turns out that was a snow day in Washington DC. So that was our thing. So our lawyers office used a courier  to get a DVD ROM and deliver it to silver springs, Maryland. And what the FDA got was a bunch of documentation about Tidepool   Stacey Simms  8:14 you submitted Tidepool Loop  , this is an app, what is you know, what do you I guess we can fast forward what would the finished product be?   Howard Look 8:22 So Tidepool Loop  is a mobile application once it is cleared by the FDA and I have to be super clear it has not yet been cleared by the FDA It is currently under review. So it is not yet available. But once it is cleared Tidepool Loop will be a mobile application for iPhone. And people will be able to get it just like you get any other iPhone app by going to the App Store and downloading it, it will be prescription required. So you'll have to go to your endo or your doctor and say this is something I would like and get a prescription code. And then people will be able to download that app from the App Store. And what Tidepool Loop  will do is it'll connect to insulin pumps and continuous glucose monitors. And it's what's called an automated insulin delivery device or some people call it other people call it closed loop or artificial pancreas. But basically it's software that automatically controls insulin delivery based on glucose values. And based on predicting how your body is going to react to insulin and carbohydrates. And it automatically uses an algorithm or math a fancy word for math to decide how much insulin you should get. So long winded answer Tidepool Loop is a mobile app that controls insulin delivery.   Stacey Simms  9:40 Well, it's not long winded at all because I know there's a lot more to it than just that even But to be clear, when I think about this, and we'll go I would love to talk more about the history and DIY and and so much of that. It basically is the brains of the operation. So you have your pump, you have your CGM but you need that program. So you know, we have the controller queue we have horizon with Omnipod, if I'm getting that right used to be type zero, which we may see in other pumps, this is that   Howard Look 10:07 that's exactly right. There's there's three pieces to an automated insulin delivery system. There's the insulin pump, which I think most people are familiar with, but it holds a reservoir of insulin. And sometimes it's something that you clip to your belt, like a Medtronic pump or a Tandem pump. And sometimes it's a self-contained unit, like an Omnipod that sticks right on your skin. So that's component number one is the insulin pump. component. Number two is the continuous glucose monitor. And the one that I think a lot of people are familiar with is the Dexcom G6, that's a super popular continuous glucose monitor or CGM, but there are others out there as well. And then the third piece is this controller piece in the middle. And what the controller does is it reads the data from the CGM. It also takes other information such as what your insulin to carb ratio is, what your insulin sensitivity factor is, knowledge about your basal rates. And it combines all that information using math and determines how much insulin you should be getting. And what's cool about it, people living with type one diabetes are used to that and used to doing the math on a napkin to figure out what their dose should be. But what's cool about it is that the software does it for you. And in the case of most automated insulin delivery systems, it does it automatically every five minutes, which is great, because that's a lot of math, and it's doing it for you. And it's also paying attention to how your body is reacting to what happened previously. And that's why it's called a closed loop system. It delivers insulin it it determines information. And then that brings that information back into the system to determine what it should do on the next iteration of the loop .   Stacey Simms  11:49 And it really has been amazing. I mean, we use I mentioned control IQ. And I had no idea even though I had been told I could make you know, 300 decisions a day, one every five minutes, and then an additional one every hour. I remember the first morning I checked, and it kept Benny at like, let's say one 10th or 105. Great number I was so excited to see. And I thought oh, well, it didn't have to work very hard last night, because he was just cruising. And I went into the pump.   Stacey Simms  12:12 And it had adjusted every five minutes. It's incredible. I don't know why I had, I hadn't thought about it that way that it would have to work just as hard right to keep him at that number. And it's not something that most people really have the inclination to sit there, you know, and do all day long. It was amazing to me just in a way. Howard, I gotta tell you, and you look at this as a parent of a child with type one, it kind of assuage my guilt of not being perfect all these years. Oh, yeah.   Howard Look 12:40 Yeah, I know exactly what you mean. So our daughter, Katie, she's 21 now but she was diagnosed with type one when she was 11. And I totally I know exactly what you're talking about, as a parent, that feeling of why can I get this right? How can I do more? What Why is this so hard? And the answer is, because it's frickin hard. It is really hard work. And these systems are taking that really hard work and bottling a whole bunch of it up into these decisions that it can make every five minutes. And even they have to work hard. If you actually look at what the systems are doing. They're adjusting insulin delivery up or down every five minutes. And they're doing their best. And it's still really hard. And so yeah, I know exactly what you're talking about, and realizing what we as parents did getting up multiple times during the night giving correction doses trying to get it right. Like we all deserve a gold star for that because it is frickin hard work. You know, and everyone living with type, of course will start to because not just as parents, like people living with type one, doing this   Stacey Simms  13:46 for decades, exactly with no breaks. So I have a lot of specific questions about title that my listeners have sent in. I'm cautious about getting too specific. I'm going to ask you, you may have to say can't answer that. Can you answer that? But before I do, I'd love to take a moment and talk about the significance of this being something that started as part of the DIY community.   I was looking back and my podcast started in 2015. But we are not waiting and started really that that same came in 2013. But people working on things like this before that. Yeah. What's the significance? As you see it, of my understanding is this is the first kind of crowdsource DIY diabetes component. I'm not really sure what else to call it to go in front of the FDA. It seems like we should just kind of stop and mark that.   Howard Look 14:31 I agree. There is so much to celebrate about the story. And what you just mentioned, is one of the huge components. So Tidepool Loop is based on an open source project that was known as Loop. I usually call it DIY Loop just to differentiate it, but it was just known as Loop. And there's a wonderful medium blog post by Nate Ratcliffe, who is the original author of Loop  and he talks about how the works He did was built on top of the work that people did before him, people like Ben West and john Costik, who figured out how to control diabetes devices over wireless communication protocols. And then Pete Schwab who's the, his daughter is named Riley and Pete went and taught himself hardware design so that he could invent the Riley link, which made it possible to control at first Medtronic insulin pumps and then later Omni pod pumps remotely from an iPhone over Bluetooth. So it's this really incredible story of innovation of people figuring out how to make this happened. There's a whole other wonderful blog post that for your technically minded readers about the reverse engineering efforts that went into figuring out how to control the Omnipod, and how to add that functionality into Loop , which at the time only could control Medtronic pumps. And so it just goes on and on and on. There's a gentleman named Joe Moran, who was instrumental, he's been living with type one for decades, and he was instrumental to that effort. And so there's the open APS community and the Android APS community, Dana Lewis and Scott Liebrand, who I know you've met. And the story is that when the community really wants to do something, they just go figure it out, it's the most it to me the most incredible example of tenacity and innovation, and grit, and everyone working together for the greater good. And all of that transpired with people just doing their thing on their own, you know, nights and weekends, or, you know, none of them all of those names that I mentioned, it wasn't their day job to go do that. They did it because they wanted to help improve lives, their own lives, or the people they love living with with type 1 diabetes. And so what we did at Tidepool is we saw how popular Loop  or DIY Loop  was, my daughter started using it when she was still in high school, six years ago, and was getting incredible results, a bunch of other type coolers. Were using it. And we thought to ourselves, you know, what, we're in a really interesting position as a nonprofit, as an open source organization that has chosen to engage deeply with the FDA that we could take this open source project built by the we're not waiting community, and we could actually bring it into our regulatory quality system. And we could take it to the FDA and say, Hey, FDA, we actually would like to make this broadly available, we would like to put it in the App Store. And we started floating this idea with everyone with the we are not waiting community, with the device makers that would have to cooperate with the FDA, with the funding organizations like JDRF. And the Helmsley charitable trust. And across the board. Everybody thought it was a great idea. And so that was really, to me, it was just so heartwarming to know that everybody agreed, yes, this needs to happen. It can't these great systems that are helping our kids sleep through the night and helping us achieve, you know, really great, lower burden control of our diabetes, that we want to do our part to now pay it forward and help make it broadly available. So I was just I couldn't be more thankful and grateful to that entire community. So I often say we are standing on the shoulders of we're not waiting giants.   Stacey Simms  18:30 That's great. All right. So now let's get down to the nitty gritty because people want to know what this is really going to look like. Let's start by talking about understanding that things change. And I'm sure that you want to work with everybody down the road, when or if this is approved. What are they approving? Is it for use with just Omni pod? I know you have an agreement with Medtronic, what starts out of the gate?   Right back to Howard answering that question. But first Diabetes Connections is brought to you by Dario. Health. And over the years, I find we manage diabetes better when we're thinking less about all this stuff of diabetes tasks. That's why I love partnering with people who take the load off and things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you. All the strips lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends, with suggestions for how to succeed get the diabetes management plan that works with you and for you. Daria has published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash Diabetes Connections. Now back to Howard Look talking about what devices will pair with Tidepool Loop .   Howard Look 19:48 So the first thing I have to be super careful because this is not yet an FDA cleared product and the FDA has very strict rules about marketing a product before it's actually available. So I'm just gonna make a statement upfront that I will probably repeat over and over, I'm going to describe the process to you that we are going through. But I'm not yet describing a product that is cleared by the FDA. And we are not yet approved to market this. So I'm what what we can do because we're a nonprofit because we're radically transparent. We share everything that we're doing with the community. So all of our engagement with the FDA, for example, we've publicly, openly published on our website. So your listeners who want to actually see what we've talked to the FDA about can go to tidepool.com/ documents, and see all of the interactions we've had over the years that I'm about to describe. So here's what I can say, openly, transparently. publicly, we have announced that Tidepool , the organization has development agreements with Dexcom, with Medtronic, and with Insulet. What I can't say is the other device makers that we are also working with, I can just say that there are other device makers, every device maker has their own timeframe about when they are comfortable talking about it. And so the first pair of device makers that we announced where Insulet, Omnipod, and Dexcom, with the Dexcom G6. And that's really notable because they have already gone to the agency, and they themselves have submitted their devices for clearance in this interoperable ecosystem. So I should if you want me to, I should probably take a little sidebar here and talk about interoperability and how   Stacey Simms  21:36 you may certainly take us out into what I call the Mr. Potato Head. Diabetes technology, so the floor is yours.   Howard Look 21:43 Super. So the FDA really gets a huge amount of credit here, because they went to industry to all of us in the diabetes device business, and they said, Hey, all y'all device, diabetes device companies, this is way too hard when you come to us with these big giant submissions for these big giant systems that include all of those components that I talked about earlier, the pump, the CGM, the controller, and everything that has to go with it. So we the FDA would like you to start thinking differently. And what they did is they issued what are called de novos, which is where they make a new product classification de novo literally means from the new and so it's a new product classification for interoperable components, and they created three different components, the eye CGM, or integrated continuous glucose monitor, the ACE pump, or alternate controller enabled insulin infusion pump and the AGC the interoperable automated glycaemic controller. So those three de novos are critical because they allow a company like us to say, hey, FDA, I'm not coming to you with an entire system that does all three things together. I'm just coming to you with one piece. So we have submitted an AGC the interoperable automated glycemic controller Dexcom submitted the IC gm Insulet submitted an ace pump and has also been talking about their future Ace pump roadmap, Tandem did the same thing. what's notable about Tandem is they submitted an ace pump and an AI AGC. So you were mentioning the type zero algorithm earlier the algorithm that is known as control IQ started its life as the type zero algorithm. So they submitted both an ace pump, which is the Tandem x two platform and the AI AGC which is known as control IQ technology, which, as you know, started its life as the type zero algorithm. So we owe a huge debt of gratitude to the agency for creating that interoperable pathway.   Stacey Simms  23:48 I'm going to probably ask you a bunch of questions that you will answer just like that. And I'll try my best not to know that while there is a large component of people very interested in the history, and the alphabet, the alphabet soup and everything you went through. There's also a large amount of people who say, when this thing comes out, can I slap it onto my Omni pod and use it? Yes. So the question then becomes, does it matter what type and again, if you can answer this I totally understand. Does it matter what type of pod they're using? Because we have dash we have on arrows and we don't use Omni pod, so I may be getting this wrong. And then we have Octopod, five with horizon coming out later this year. So you know, people are saying Howard, what do I stock up on?   Howard Look 24:31 I see. So let me so I can't specifically say what will be cleared by the FDA because it hasn't been cleared yet, but I can tell you what the intent of Tidepool Loop   is. So Tidepool Loop  is intended to be an IEC and interoperable automated glycemic controller. And in order to be that type of device, it can only work with IC GM or Ace pumps. So it will not be able to work that with anything that does not have an ace pump does it And it will not be able to work with anything that does not have an IC GM designation. Got it?   Stacey Simms  25:06 Okay. And then my next question is, and this comes back to I think I asked you this the very first time when you announced, you know that you were hoping to shepherd Loop to the FDA. And it's an interoperability question that I still can't wrap my brain around. I'll give you the example of Omni pod. So I'm very excited this fall, I get my Omni pod five with horizon. It's got its own hybrid closed Loop  system, or whatever they're calling it these days. And then I hear Oh, Tidepool  is out. And I want to go to the app store and get Loop . Do I flip a switch on my Omni pod? PDM? Or do I have to? Do I have to right now, because I know you're talking to interoperability in the future and everything. But what happens now? Can I switch to it? Or do I have to pick one and then stay in that?   Howard Look 25:47 I don't believe people will be locked in the so there is no Well, I shouldn't speak for Insulet, right, there is no switch on the PDM pods. The way pods work is they can pair to one controller at a time. But pods are disposable. So if you pair one controller to a pod, you can pair the next pod to a different controller. So that would be the idea there, there's no switch that you flip, the idea with type will Loop would be as a different kind of controller that you wouldn't need to use your PDF, you would use type of Loop  on your phone. Great.   Stacey Simms  26:19 I think everybody's gonna hopefully they all want to go to phone anyway. And that's what everyone seems to be working for. And I know most of my questions that are also for Omnipod. And you really can't answer them. So we will talk to Omnipod down the road and find out more. So let's go back to a bunch of questions about the targets because one of the things that people love so much about DIY, is that they can really set these target ranges for how they want and other things. Um, can you speak to that? What kind of flexibility as compared to what people understand with DIY Loop? May they experience the Tidepool Loop?   Howard Look 26:47 Yeah, it's a super question. The first thing I will say is, we totally understand how the community loves having the flexibility of choosing their own target range set points. And we believe in that as well. That is definitely something that type schoolers who use DIY lube, understand the value in that my daughter uses DIY Loop . I've been very public about that. We did in our submission to the agency proposed flexible set points. We are in review right now, that is something new, and most companies before us have submitted would fix set points or a limited set of set points. That is something that we are discussing with the agency, we're not yet cleared. So I can't tell you how that discussion will go. What I can tell you is the agency has been great. They have been so good. During this review. I know a lot of people like to dump on the FDA. I will not do that. Because my experience with the agency has been these are hard working really dedicated public servants that really want the best, safest and most effective solutions for the community. And the questions they have asked us about our clinical study day about how we built the product about cyber security is all completely reasonable. And so I know they are seriously considering it. And we're hoping we will know the answer to how   Stacey Simms  28:13 well it's interesting too, because as I mentioned kind of offhandedly. Everybody's working towards bullets from phone and control from I'm sure many of them the more I guess I can't say commercial and leave you all out now. But many of the traditional commercial systems are working toward that. Can you share a little bit how it looks on the phone? Because that's so novel for so many of us that haven't even thought about that before? Use it before in our phones?   Howard Look 28:35 Yeah, well, it's a little tricky. I wish I could just bring it up on screen. And what I will tell you is for your listeners that are used to what DIY looks like Tidepool Loop will look extremely familiar. There's there, you, you know, we've changed some colors and move some icons around but it'll still look extremely familiar to anyone who has seen DIY Loop  before. For folks who haven't seen what Loop  looks like, you can go to our website, there's a screenshot of the home screen. And obviously once it's cleared, we will publish all kinds of more information about what all the screens look like. But anyone who has seen DIY Loop  and understands the home screen with the glucose chart, the insulin chart with the buttons that let you bolus and do target pre meal targets etc. It'll all look extremely familiar and type   Stacey Simms  29:28 is it Apple and Android   Howard Look 29:30 we submitted only for iPhone for now. And the reason for that is DIY Loop  is only for iPhone. So the fastest path to us submitting and to getting it out into the community was to go with what already existed. That said we absolutely are committed to building an android version. We're also committed to going outside the US which is also the next question I usually get asked. And so we are a small company. We like any good small company. staying focused on one thing at a time and making sure we do that one thing well, so that one thing right now is getting it in the app store in the US, approved by the FDA, and then moving on to Android and outside the US is absolutely on our roadmap. And stay tuned. I don't want to over set expectations about when all that's gonna happen, we definitely will get to it.   Stacey Simms  30:21 Excellent. Yes, that was stuff. That was one of the questions. I'm curious, though, for somebody, you know, I don't even use my son's pump anymore. He's 16. I don't even see anything anymore. But I'm curious, in your studies with folks and somebody who's used DIY or your daughter is used for a long time. Is there anything different when you do use your phone as a controller? Other than convenience, I'm wondering if there's anything noticeable and different about it?   Howard Look 30:45 Well, I think what people report people who have been using DIY live, because no one has used a Tidepool Loop on their body yet, but people who use DIY Loop  report that the freedom and convenience of having the interface on the thing that you're carrying anyway, is really wonderful. And Loop  also includes an Apple Watch component. And I know a lot of people find that really liberating to be able to manage your diabetes right from your wrist. So I think what we've heard from DIY Loop  users is, hey, look, I've got my phone with me all the time. Anyway, I'm looking at my phone all the time anyway. It's just so nice to be able to just interact with my diabetes using this thing that I use all the time anyway. Wow.   Stacey Simms  31:26 So just to be clear, you can control it from the watch as well, or That's it? Yes. Okay. Yes,   Howard Look 31:31 cool.   Stacey Simms  31:32 In the clinical trials, or the testing that you had to do for the submission, what came out, I mean, there was so much kind of, I don't know, it's off the record information for DIY. But I imagine that with tight pull Loop  you really show did you have to demonstrate better control or just safety.   Howard Look 31:47 So this is another fascinating part of the story and how the community contributed to the success of Loop  the FDA very early on, when we started talking to them about the possibility of submitting, we said to us very clearly, we love real world evidence. And so the clinical study data that we submitted with the 510 k application for Tidepool Loop  , it's actually clinical data that came out of the Loop  observational study of the Do It Yourself Loop  community. And this is really an incredible study because it had over 1000 people in it, over 700 of whom were actively uploading data. And the amount of data in the study is staggering. As a matter of fact, the total person years or person days of study data in this study, if you take the control, IQ, pivotal study, the bazel, IQ, pivotal study, the Medtronic 670 g, pivotal study, and add it all up. The Loop  observational study of DIY Loop  has three times as much data submitted as those studies are three times as much data that's part that was collected during the study. So it's really a staggering amount of data. And we are really just overwhelmingly indebted to the community to all the people who participated in that study. And that was the foundation for the clinical evidence that we submitted with Tidepool , which is a pretty amazing thing. And I don't know that that has been done in that way before. Now, the data that is from that study has been published. So for your listeners who want to learn more, there are a couple places you can go the Job Center for Health Research to publish the paper, and I'm sure a quick Google search will turn it up. It's called the Loop  observational study. It's also on clinical trials.gov. And if you want to see the presentation that was shown at last year's attd, and Madrid right before Coronavirus, broke, or was in full swing, February of last year, that's on our website@titlesearch.org slash documents. So to answer your question, what was interesting, what was interesting is how broad the use of Loop  was, it was down to people under two years old and there were people in their 70s. There were people from all walks of life, it was just really fascinating to me, remember, this is a real world study. This was not a controlled intervention study. There wasn't a randomized control arm and people not using it. It was just observing life of people using it. And so to me that was the fascinating part is that so many people were willing to raise their hand and say, I want to help donate my data. And I'm going to show you how it works for me.   Stacey Simms  34:36 And we'll link up those studies that you mentioned, but I assume that they were good studies, in other words that people were happy with their agency, their time and range, ease of use safety, all that stuff,   Howard Look 34:46 the data, it looks great. There's some really fascinating outcomes. The way it works with the agency is only the FDA can say what's safe and effective. So we present the data to them. Here we say here's why We think it is safe and effective. But at the end of the day, the FDA is the one that gets to say, Yes, we agree. And therefore you are now FDA cleared. You know,   Stacey Simms  35:08 you've already mentioned this several times, but Tidepool  has always stood out for being very open source, very open with information, publishing everything that you can saying as much as you can. I am curious that now that you have gone through something like this, are you happy that you did it that way? Would you do it that way again,   Howard Look 35:28 so the part about being an open and transparent organization I love, I think it is a great way to go. And I know it's not for every company, there's great value to big commercial companies like Apple choosing to keep their product plan secret, and then doing a huge launch and saying, tada, here's what we've done. For us as a small nonprofit with the mission of supporting the diabetes community, I think it's a great way to go. Because it allows us to be really clear that look, our motives are not about profit, our motives are about doing the right thing for the community. And to me, the openness and transparency just makes all that completely clear. There's another part of the story, which is doing it as a nonprofit, we happen to be doing both. We're open and transparent. And we're a 501 c three nonprofit, that part is tricky. I will be honest, especially during the pandemic, a lot of nonprofits including us have been hit hard. And that's been really challenging. It is much easier for a for profit company to weather a storm, if they've got a venture capitalist willing to give them funding or they can take out a loan as a nonprofit that has been challenging. Would I do it the same way? Again, I totally would, none of us could have predicted the pandemic. So it is what it is.   Stacey Simms  36:47 So with your nonprofit status, if I decide after FDA approval, and I can go to the app store with my prescription from my doctor, Uh huh. am I paying for it? Is my health insurance paying for it?   Howard Look 36:59 So here's where we are. And I will be open and transparent about this, which is we don't know yet. So as a nonprofit, our goal is to make the software as broadly available as we possibly can. We are engaging in commercial deals with some of these device makers so that they will actually give us money when people start using lube because obviously, we're bringing new customers to them that are going to keep buying supplies and pumps and cgms from them, we would love to keep the price as low as possible. And if there's any way we can do it, we want to make it free. We're not sure we can yet we've got to project out how it's going to go we do have a we we have people on staff and we have to pay them we're not going to do it has a way of making money the way a for profit company would we don't have to answer to investors, we don't have to answer to the stock market, we would only do that if it helps us be a self sustaining organization. And it helps us continue to deliver on our mission.   Stacey Simms  37:59 Somebody it's fascinating to think about the questions you start asking when you start going down this road of as you said, nonprofit and open source, everything else is an on that road. There are rumblings they're not really there yet of other possibly DIY routed projects that are waiting to see what happens with you guys. Right? So if you can, it's kind of like when Medtronic gotten sick, 70 approved. And then other people said, okay, we can now take our product. And we'll probably get it through the FDA with a lower, you know, time and range without calibration and things like that. Do you think that? Is this going to be the start of a different kind of diabetes technology? approved by the FDA? Like in five years? Could we have different like, you've already mentioned open APS and different things that you've built on. I wonder if there's somebody working on something today that because of the title submission would have an easier time coming through. So I asked about three questions in there. Sorry,   Howard Look 38:51 I, I sure hope that this is the start of a revolution in how new diabetes technology is created and delivered to market, whether it ends up being open source projects, or it's because we've shipped like we share all of our source code, we share our regulatory quality management system openly, we will publish our 510 k submission once we get through interactive review and clearance. And we're doing that because we want to help other people. Like for us, it's a win if there's lots more technology coming out that gives the diabetes community more choice. And that allows our kids and people living with diabetes and to have better solutions that fit better in their lives. That's a big win. Like we've got no ego invested in this. I want lots of companies, whether for profit or nonprofit, whether based on open source or closed source, it kind of doesn't matter. What I want to see happen is innovation. And I want that innovation to happen more quickly and get into the hands of people who can use it more quickly. So that's the wind for us.   Stacey Simms  39:57 As we start to wrap up here my interaction portability questions still are out there. And again, I know that you cannot speak to different products, and that's fine. I mean, you can and that's fine too. But when I think of true interoperability, and my ecosystem is limited just because of what my son uses, but I think of Okay, if I want to use this controller, but whether it's Tidepool Loop   control, IQ, or Omni pod horizon, whatever, and I want to use a Libra, and I want to use this pump or I want to use a Dexcom. Or I want to use the Dana pump or whatever. There's, there's all these pumps, and CGM is coming to market. Are we going to see that anytime soon?   Howard Look 40:35 I am very optimistic that true interoperability is on its way. And one of the huge reasons we are doing what we're doing is to show that that is actually doable, you should be able to pick the pump that's right for you, you should be able to pick the CGM that's right for you, you should be able to pick the controller and the user experience that's right for you. I do imagine that there is a world where you can say you know what, I'm the pregnant mom living with type one, or I'm the athlete living with type one and I have very different needs, and the system should be able to adapt to you. And you should be able to choose which thing is stuck to your body to work best for you. So I am very, very optimistic that interoperability is happening. And we are pushing on it and we and I believe the FDA wants to tap into. That's why they made these interoperability pathways.   Stacey Simms  41:27 I remember when I saw one of your presentations on the shoulders of giants presentations A while ago, one of the things that people really like in addition to the the wonderful blood sugar control they get from DIY lube, they really like the icons, there's like ice cream and pizza. There's all this neat little stuff in the app Are you able to share it with you could just save any of the cute stuff.   Howard Look 41:48 Oh, there is a cute, the cute stuff is still there. Like I said the experience of Tidepool Loop   will look very familiar to users of DIY Loop . And one of the things that people love about DIY Loop  is the ability to use emojis to indicate the type of food you're having, whether it's the lollipop for fast acting carbs, or pizza for the very long acting carbs, and all the emojis in between. So that's something that people love about DIY Loop . And we have maintained that in in Thai polish.   Stacey Simms  42:22 I said it was my last question. I lied. I meant to ask you. The first time I talked to you in 2016. We were talking about Tidepool  as an a data company. Right? I want to see my data I want to free the data is that still part of the mission? Is that still something that's part of the core of title moving forward?   Howard Look 42:41 It absolutely is. So at title we like to say Our mission is to make diabetes data more meaningful and actionable. And seeing all your data in one place is still absolutely part of our mission. pypo web and title uploader are incredibly popular. As a matter of fact, we have about three times as many users now as we had before the pandemic started. Because when there's a pandemic, it turns out, you need a way to upload your data remotely. And so that is absolutely still a part of what we're doing and making diabetes data meaningful. actionable is still absolutely part of what we do. Awesome.   Stacey Simms  43:24 Well, Howard, you've been so generous with your time I appreciate it so much. Just one more thing is your how's your daughter doing? You've got you've got three kids. Yeah, one child was dying with type one. But everybody You're like an empty nester, almost.   Howard Look 43:37 We are an empty nesters. But Katie is doing great. Thank you for asking. She's in college, and she is doing wonderfully. I will tell her you asked about her.   Stacey Simms  43:48 Oh, absolutely. Thank you so much for sharing all the information. Come on back, when and I will say when you get FDA approval, and we can share lots more details. But I think this is phenomenal. I'm so excited to just kind of be part of the information stream over the last couple of years. And it's just been so much fun to follow this. So thanks for coming on, Howard.   Howard Look 44:08 Well, thanks for all of your amazing questions. And it's just been so great to have you been with us and sharing our story over the years and so we're really, really grateful to you and all your listeners.   Howard Look 44:24 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  44:30 Lots more information at Diabetes connections.com. I know you had many more questions. I got so many questions in the Facebook group for this topic. But once I went down the road with Howard, I realized there were a bunch that he would not be able to answer. Frankly, most of them were for Insulet or for the makers of Omni pod. So I reached out to them and I will continue to ask them to come on the podcast. It's been a while I think they're waiting until they get FDA approval for their next product. But I'm working on it and I hope to talk to them as soon as I can. I Know You all have questions. And boy, it's a really exciting time. I hate that the technology. And title is not an example of this. I hate that a lot of the technology got backed up because of COVID. But man, this is going to be a very exciting year or two as things that have been kind of delayed, get released, which is why I'm doing this focus on technology this year. So I'm very excited about it. And I cannot wait to see so many questions there about what the FDA actually approves. And we know Tidepool  with all of their wonderful open source and access to information we know that they will let us know. And I'll pass it along as soon as I learned anything. All right, let's talk about Tell me something good. We're gonna have a story or two about summer camp diabetes camp, and a teenager with type one has an idea for a Funko Pop, that you're going to love. Diabetes Connections is brought to you by Dexcom. And one of the most common questions I get is about helping children with type one to become more independent. These transitional times are tricky elementary and middle school then middle to high school, you know what I mean? Using the Dexcom really makes a big difference. For us. It's not all about share and follow although that is very helpful. But think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four or five finger sticks at school, or for a second grader to just show the care team the number before Jim, you know, at one point Benny was doing up to 10 finger sticks a day, and not having to do that makes this management a lot easier for him. It's also a lot easier to spot the trends and use the technology to give your kids more independence. Find out more at Diabetes connections.com and click on the Dexcom logo.   This is normally the time of year where people are signing up for camp. I know certainly for us, we're already our summer is planned by the end of February when my kids were younger with this both school aged kid and we both worked full time. You know I had summer programs done by this time, but of course it was COVID everything has changed. So it tells me something good. I was excited to share this week that I'm hearing about more summer camps that plan to be in person. And diabetes camps are certainly tricky, because while everybody should be taking lots of precautions because of COVID. You know, people with diabetes really need to take more precautions. So I was thrilled to find out just a couple that I'll pass along and I'll put more of these in the Facebook group. Hopefully we can get more as the information comes in. And as you learn what your local campus doing, we can share that info. But Texas lions camp, which is the one that among other people, Dr. Steven ponder runs, they are doing something really interesting this summer, they have decided to open it up for family camp. And my understanding about this is that the whole family can come. But each family will stay in its own cabin, they will get together as socially distanced appropriate, if that's the right way to put it for activities and things like that. But within the cabin will be the family unit that's already spending time together. And so you wouldn't have to wear your mask within the cabin, you know, that sort of thing. And I think it's a really creative approach. I'm pretty sure they've had an amazing response to this. They may already be mostly filled, but you can definitely check it out. I'll put the link there. What a fun and interesting way to step up for this challenge and camp kudzu in Georgia, which is a very close to my heart camp. I'll tell you about that. why in just a minute. But they have decided to have teen camps, family camps and four weeks of summer camp. So if all goes well, I'm sure things will look a little different, but they are going ahead with their camp program as well. And I bring up kids though, because I didn't know this for the first couple of years Benny went to camp. It's down the street from his regular non diabetes camps that I've talked about many, many times. Now camp kudzu is hosted at other camps. So it's not really their camp. I believe it's camp. Burnie it's their camp grass that they use in beautiful Cleveland, Georgia. And Benny goes to camp Coleman, which is just down the road. And I didn't realize that for the first couple years. I gotta tell you, I would have put My nervous heart at rest. To know that I was sending him away for a month and there were 100 people with diabetes down the street. I did end up calling them I want to say was the last year Benny went so 2019 because of course he didn't go last summer. His insulin pump broke the very last day of Camp the last full day of camp. I don't know if he knocked it into something. We never figured out what happened but it just it just crapped out. And I called them to see if somebody could lend him a pump and they had their program had just ended a couple of days earlier. So he was fine. He did shots for the 24 hours before he came home and Tandem. I tell the story. By the time he got out of the shower, he came home he jumped in the shower, by the time he got out the pump was delivered. So we'd love how great they are with customer service. Our local diabetes camp hasn't made a decision yet as far as I know for what they are doing. But I'm sure that they are going to make that announcement pretty soon. So if you know what your camp is doing, you know we'll share it let me know I'm really hoping that as many kids as possible I can go back to diabetes camp this summer. But if your camp isn't having in person, I know it's not ideal. Do the virtual be part of this community however you can. It's so great for kids and for adults to certainly our other Tell me something good is really cool. Now I am not the biggest follower of Funko Pop collectibles. I actually thought they were pop Funko which tells you all you need to know I have two in my office Actually I have Queenie Goldstein, from Fantastic Beasts and Where to Find Them from that Harry Potter spin off That's an inside joke with my family. I have Deathstroke because death strokes real name is Slade Wilson. My husband's name is Slade. So that's his funko pop and ended up here somehow anyway, all of this to say that I want to share the story of Ethan Savage. Ethan is 17 years old, and he was diagnosed with type one in September of 2019. He has a campaign to get the folks at Funko to create one of these figurines about type 1 diabetes. And if you haven't seen this, I'll put this in the Facebook group as well. But these are super popular, just about every pop culture character now has one of these. They're not bobble heads, but you know, the head is big, the body is smaller. They're very cute. And they're very popular. So Ethan has written to the company, he's got an Instagram account, he's showing them an example of what it could look like. And it's I guess it's Ethan. It's this kid, a guy. And he's got, you know, a pump on he's kind of lifted up a shirt and showing it off. I kind of say the guy looks cute, but kind of fierce, too. It's a really well done rendition of what this could be. And Ethan has been selling posters of the concept to raise money for JDRF. And he's got a diabetes educator who wants to give the figure here to newly diagnosed kids instead of as he says a lame stuffed animal from the kitchen.   In the letter that he shared with me that he wrote to Funko he says we're convinced this could make a great pop or series with a bigger opportunity. Most importantly, it'll raise awareness for good cause and bring you new fanatics. Haha, links below. I think this is phenomenal. I'm going to link up the Instagram account. And hopefully we can amplify the efforts here because I could see a whole line of kids with type one adults, even the celebrities that we've gotten the community Supreme Court Justice Sotomayor, what a great pop she would make. I think that'd be hysterical. I do have to tell you that one of the reasons that Ethan came to my attention is because I went to school with his dad. And it's unbelievable in the last couple of years to people off the top of my head, I can think of that I went to high school. I mean, really, I went to grade school all the way through high school with these folks, their kids have been diagnosed with three of us in the class of 1989 from York High School, have kids with type one now, I guess not that unusual, but it really brought it home for me. So thanks, Jonathan for sending this along and connecting me with Ethan and Hey, who knows what's gonna happen. If you have a Tell me something good, please send it to me Stacy at Diabetes connections.com, or post it in the Facebook group. And it's Diabetes Connections, the group.   Stacey Simms  52:23 Looking ahead next couple of days, we're gonna have another classic episode out for you. And that's coming on Thursday. And then we are continuing with the focus on technology have some really interesting stuff coming up in the next couple of weeks, I spoke to the people from City of Hope they've changed their name, but you probably know them both mostly by that and mostly by the claim they made a few years ago that they were gonna have a cure for type one within six years. I had to talk to them about that they have some really interesting new research going on. And I did talk to them about that claim. Because I actually think that did them a lot more damage than they should have set themselves up for to me that was a mistake. And they talked about it. They talked about why but we are almost really it's five years in now. So I'll be bringing you that story. I am talking to beta bionics the folks behind the islet damianos company about what's going on with them this year. And as I said, reaching out to Omni pod and helping to get a lot more technology stories for you in the weeks to come. In the meantime, thank you as always to my editor John Bukenas from audio editing solutions and thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then, be kind to yourself.   Benny 53:33 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

You may know Jerry the Bear as part of Beyond Type 1. But this learning and companion toy for children with type 1 diabetes got his start as a college project. Ten students from Northwestern University entered the first every DiabetesMine Design Challenge back in 2009 and won the most creative design. A few of those students continued on and – as you’ll hear – started a new company called Sproutel. In addition to Jerry the Bear, Sproutel makes My Special Aflac Duck for pediatric cancer patients and Purrble to help children self-soothe. This interview with Sproutel CEO Aaron Horowitz and Chief Creative Officer Hanna Chung first aired in November 2015. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription:  Stacey Simms  0:00 This episode of Diabetes Connections is brought to you by Inside the Breakthrough, a new history of science podcast full of Did You Know stuff.   Announcer  0:13 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:19 Welcome everybody. This is going to be a fun classic episode of the show. I'm really glad to have you along. It's been fun this year to take a look back at some of these interviews. These classic episodes, as you likely know by now are from the very first year or two of the podcast. Most of them are from the very first full year of lunch. And it's great to take a look back and revisit some of the cool people that we talked to a lot of you are newer to the show, or at least haven't been here for every single one of these. What are we 355 episodes. So I'm really happy to bring these classic episodes back out with an update. So hi, I'm your host, Stacey Simms, and my son was diagnosed with Type 1 14 years ago he is now 16 my husband lives with type two diabetes, I do not have diabetes, I have a background in broadcasting. That's how I came up with the podcast. And this episode is all about Jerry the bear a learning and companion toy for children with type 1 diabetes, you may be familiar with Jerry and I put some pictures in the Facebook group over Diabetes Connections of the group. But Jerry started out looking a little well a lot different and having different functionality. You may know Jerry has part of beyond type one. Now it's a program under them. They're helping with distribution and lots of other good stuff. But Jerry got his start as a college project. 10 students from Northwestern entered the very first diabetes mine design challenge back in 2009. And they won the most creative design back then a few of those students continued on and as you'll hear started a new company Sproutel that continues to this day. And in addition to Jerry, the bear Sproutel makes my special Aflac Duck for pediatric cancer and purple for finding calm. I will link both of those up at Diabetes connections.com you can get more information and check them out. They are they're adorable. They're really helping kids and families who need them. And as always, you know, episode homepage will have all the details. I did reach out to Aaron Horowitz. He is the CEO of Sproutel he's one of the people you'll hear from in this interview when I asked him for an update. And he says since this time, of course, they've added quite a few things. Most recently, they've added a continuous glucose monitor to Jerry. And they put in another software update that helps kids learn about washing their hands, and I guess washing Jerry's hands to about washing their hands more often that sort of thing. And he indicated that there is a big update coming later this year. So I will circle back with Aaron. And hopefully we'll do another interview and get some more info on Jerry. I will let Aaron explain much more about the history of the company in that classic interview in just a moment. But first, this episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast. And the latest episode goes in a very interesting direction using the TV show friends to reveal how we really feel about scientists. I'm not sure that Ross is really the best example of this, but they they get it done. Marie Curie was an outsider in ways you never imagined sort of like Ross on the show. I really do love this podcast. It's historical wisdom mixed with modern insight with quite a few laughs along the way. Really great production value. Search for insight the breakthrough anywhere you listen to podcasts. And by the way, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. My guests in this classic interview are the CEO of sprout tell Aaron Horowitz. And Hannah Chung, who at the time was chief creative officer had a left Sproutel in the middle of 2020. I reached out to her I haven't heard back yet. So I will post an update in the show notes when I do hear from her and let you know where she is heading. Next is really fun to kind of go back in time and hear the story of Jerry, the team's appearance at the White House. And a lot more. Aaron and Hannah, welcome to Diabetes Connections. I am excited to talk to you both again.   Aaron and Hannah: Absolutely. As are we,   Stacey Simms  4:25 Hannah and Aaron. Let's start at the beginning. Let's start with the idea. How did you come up with the idea for a stuffed animal that kids could play with and learn from?   Aaron Horowiz  4:35 So it actually started by talking to families of kids with type 1 diabetes. We we went into the homes of bunch of these families and as we were playing with kids, we observed that they were taking care of their teddy bears of their stuffed animals as if they also had diabetes. So they were pretending to prick the the paws of of their teddy bears pretending to give them insulin injections. Some kids were even actually taking little pieces of cardboard and paper and drawing insulin pumps that they would then staple to their bears first. So it that was kind of really this this lightbulb moment for us of wow, you know, these, these kids are mirroring everything that's that's going on in their lives that they don't yet have control of. So can we bring that play experience to life? And can we do it in a way that is educational, that is comforting. But most importantly, that's really fun.   Stacey Simms  5:28 You know, it's funny, I hadn't thought about this in a long time, Aaron, but when you bring that up, my son had an Elmo doll, and Elmo from Sesame Street, and he was 23 months when he was diagnosed, and that Elmo got checked and got juice boxes, which made a mess, and got insets put on him. So it makes perfect sense that playing kind of helped these kids get through what they couldn't understand.   Unknown Speaker  5:50 Absolutely. You know, like, as kids, we roleplay so many things, you know, right, we roleplay tea parties, we roleplay you know, dressing our animals up and making weddings for them. And for kids with with conditions like diabetes, like, like Benny did with Elmo to roleplay diabetes,   Stacey Simms  6:07 when it was the idea of spread towel always to help medically and to help with play. And then you come up with the idea for type one, play? No, actually,   Hannah Chung  6:16 the reason why I started spread tell was we really wanted to work on Jared the bear so and our mission was to really bring Jerry into the hands of all kids. And from there, we realized incorporating company allows erinite to work with this full time and you know, bringing awesome mentors, investors on board to help us feel the business. And from there just talking to a lot of families talking to a lot of kids, you have realized that the application of play into health can be so many different can help a lot of people not only for kids, but also for adults and the elderly. So from there, you know, working under the beret type 1 diabetes really allowed us to see the potential into coming into, you know, like applying this to help all kids to be healthy. And you know, and have a long term vision of helping all people to use play to help them to come healthy and well. So yeah, a little little Jared type 1 diabetes really allowed us to have the vision for scratch help. That's great. Okay.   Stacey Simms  7:15 So Jerry has changed quite a bit. There is a new Jerry right now still loyal to that wonderful idea of learning through play. But tell me about the first Jerry, what, you know, what did Jerry look like? And what did he do Aaron?   Unknown Speaker  7:30 Yeah, so well, I'll say that there are, quote unquote there two first Jerry's. There's the first Jerry the bear prototype. And then there's the first bear that we shipped. And I have a real soft spot in my heart for the first jar, the bare prototype. So I'll just touch on that for a second. Our first bear that we ever made, was when Hannah and I were still in school, we had no idea how to solder how to make a circuit boards, even even how to sew a bear. And so we were learning everything as we went along. And what we created I'm staring at it now in our office is like a two foot hard chested like behemoth of a bear eyes that we cut out of a Furby so that it blinked its head was attached to its body with with actually with metal nails. It was it was quite creepy looking. And we had made so many mistakes about our understanding of type 1 diabetes, because at that point, we didn't have kind of the intrinsic knowledge from the community. So for example, when we tested with our first our first user, Gerry's blood glucose level was only two digits. In fact, his screen was only two digits big. And actually, this, this little boy said, I would be hypoglycemic and go into the hospital. That was my, like, face total facepalm you know, we had missed the mark. But it taught us so so much about one, just the immense amount of knowledge that we had to learn so that we can then create something that actually had an impact. But it also showed us that despite the fact that Jerry was big and clunky and looked super scary, this this child was still really excited by the fact that there was a bear that also had diabetes. So that's, that's our technical for our first Jerry,   Stacey Simms  9:08 I'm looking at the timeline you recently posted on Facebook, and I'll link this up at Diabetes connections.com if it's okay, is that the first Jerry the one that's really big and kind of light colored all the way on the left? It is He is creepy looking   Hannah Chung  9:22 at that photo, because the girl is so cute, it makes the photo look really cute. But the bear itself is just take out the little kid part is kind of not that cute.   Stacey Simms  9:32 But I it's fabulous to see where you're going. I mean, even then, you know, this is a toy. This is a really sweet idea. And then it's changed. It was um, it became a little smaller and a little bit more responsive, I guess is what I'm looking for at least it had three numbers for the blood glucose.   Unknown Speaker  9:50 Absolutely. Yeah. So it got a lot more responsive. The bear that we ended up shipping. Really we went we had gone through 29 different iterations of product Type and the real difference between some of our early prototypes. And what we actually ended up creating and sending out to families was that the existence of a storyline. So the jury that that kind of existed in the world for the past few years, it has this curriculum with I say curriculum, but I mean animated storybooks. It's got 21 animated storybooks, where you train Jerry for the all star games, which are kind of like the Olympics. But the sports are things like climbing trees and diving with sharks. And we teach about diabetes skills, because each of these storybooks jargon meets up with a new friend like love with a monkey or George the vegetarian shark. And they teach Jerry about both a sport and a diabetes skill. So what we ended up sending out had this kind of all of these storybooks and the way that you unlocked the storybooks was that you had to care for Jerry correctly. So there's kind of this game mechanic that's built in where children are not only caring for Jerry, who, by the way, has a blood glucose level has fingers that you can prick to check, check that foods that you could swipe over his mouth and insulin injection spots. They're not only doing justice, what they did with their stuffed animals or with their Elmos, where they're mirroring all of their all of their care procedures. But they're doing it to unlock these the storybooks, which for them are kind of the carrot and the incentive at the end of doing this. But for us, that's that's really the way that we can convey some of the really complex things that that you need to learn.   Stacey Simms  11:23 That's really interesting. So the new iteration of Jerry, you've expanded from just type one, as Hannah mentioned a few moments ago, you're really trying to work toward overall good health. Hannah, tell me what's new about Jerry this time? Yeah, it's   Hannah Chung  11:38 a new Jerry. A couple of things. He's cuter, smarter, and with a more affordable price point. So the biggest thing that has changed is around this curriculum. So one, so the new Jerry, his base curriculum is around general health. So he touches social emotional development, nutrition, exercise, sleep and mindfulness. And from there families can customize Jerry to have a condition like type 1 diabetes, or food allergies, and yours were modular. And and it kind of allows families to kind of customize Jerry to mesh their own child. So you know, we can't so that we can build a world where everyone can have a Jerry but not all, Jerry is the same, which is really cool. And the way the new drivers interaction wise, Jerry had a belly device called a portal is kind of like a window to see what's going on in Jerry's world. So using this portal, you can kind of scan Jerry's brain and different body parts like the mouth and his stomach to see what is going on inside. Similar to the first year of the bear, you can still feed him, you can see how he's feeling. But if having the portal be detachable from the body, it kind of allows more physical movement for a child to interact with Jerry, which is really nice. And New Jersey also washable, which is a huge feedback that we've gotten from especially for educators, you know, if you want it to be used in a hospital setting, and washability is a big part was but we're wipeable with Clorox and things like that. Now this new Jerry is washing machine washable, which is really exciting. And   Stacey Simms  13:09 yeah, that is because who would think of that, but but you absolutely if you have somebody who's using it in a in a healthcare setting in an office or a hospital, or you know that Elmo went in the washing machine a million times because they get kind of gross.   Hannah Chung  13:21 Yeah. And then lastly, some of the looks of Jerry has changed. So the previous year was really cute. But we knew that Jerry could be the first Jerry was more geared towards kids who are younger, like five year olds, and now the New Jersey we want to help our age, the target age we're looking after is between three and four and nine. And even though that might be only a five years difference, it's a huge difference in the kids role and what kids can understand what kids are interested. So what we've done is we design a character that could be more appealing for all kids in that age range. So Jerry looks more expressive. And Jerry kind of have this longer arms like a monkey arm which I really love because he's more huggable. And so all in all, from design to interaction to the modular aspect of the curriculum has been the biggest part for us for ended up in designing the new dairy that we have.   Stacey Simms  14:17 Aaron Talk to me a little bit about food allergies, there are so many health conditions, unfortunately that affect kids. Why? Why did you move to include allergies?   Unknown Speaker  14:28 Yeah, when we look at different conditions that that kind of might be able to be addressed or to be helped out with with Jerry, we look at kind of two factors. One is the emotional implications and the other is the educational implications. And so food allergies very similar to type 1 diabetes, there's there can be unfortunately a lot of stigma for example, things like the peanut free table we've heard a lot of horror stories from families of isolation cause from eating at school. or children not understanding or really believing that other children have food allergies. So there's this whole kind of emotional and emotional coping component, which we really feel that Jerry kind of provides some of the biggest impact there just because of the comfort, because of this mirrored care that they have something else that is someone else. That's, that's just like that. And then the second is, is the educational component. And that really boils down, you know, for kids with food allergies, it's things like reading nutrition labels, and also very similar to diabetes and knowing how to articulate how you feel, and knowing when to to go and ask for ask an adult for help. This is really kind of universal across a lot of conditions. But you know, particularly in food allergies, there's every label or every piece of food that you put into your mouth, you're going to want to read the label, you know, see if it has whatever your allergen might be. And there is kind of this also really interesting correlation with, you know, an action that's tied in with mealtime, right. So for diabetes, you might be checking your glucose level and, and taking insulin for food allergies, you're doing it around mealtime, you're reading these nutrition labels, you're making sure that you're sitting in a place that's allergen free, you're making sure that the people around you don't have allergies, you you need to have washed your hands to make sure that you didn't touch anything. So there's all of these just kind of procedural things that we see a real alignment in the value that that we've seen Jerry provide for children with type 1 diabetes already.   Stacey Simms  16:26 And so far, how has it been? I know you've just put it out there. And you've been part of the diabetes community for a few years, where you've been very well received, how have you been received in the allergy community?   Unknown Speaker  16:37 So we've certainly had parents that are incredibly excited. I'll say this, we're kind of stole almost as funny term, but like making a name for ourselves in the food allergy community. We haven't yet gone to a conference dressed as teddy bears.   Unknown Speaker  16:50 Yeah,   Unknown Speaker  16:51 wait, what we did things like children with diabetes and ADHD,   Stacey Simms  16:55 I should stop you and say, This is how I met Hannah and Aaron a few years back when they were dressed like Jerry, the bear at a conference, which was so much fun. And you definitely had to stop by and talk to them to find out what was going on. So yeah, you need to go to food allergy conference and do that.   Unknown Speaker  17:11 Absolutely. That's kind of I think that that's how I think about kind of putting a stake in the ground. Moving into moving into new territory, we got to Don the bear suits, we got to go to a conference and maybe have a dance off with another mascot.   Stacey Simms  17:25 But But have you have you had any feedback from parents of kids with food allergies yet?   Unknown Speaker  17:29 So absolutely. So before we ever kind of decided to move into that into the food allergy realm, we actually interviewed, gosh, a range of families, a ton of families, and the people that we talked to were, you know, ecstatic that we were creating something for food allergies, and actually told very, very similar stories to the families that we had originally interviewed of kids with type one, that their children would pretend that their stuffed animals had a peanut allergy or a shellfish allergy. And they would pretend to have them go into anaphylaxis and give them an epi pen. And so we really saw this this need being presented and are excited by kind of the their excitement for for Jerry and and of course, it's jury's not out in in the world alive and kicking yet for kids with allergies. So we won't see kind of the rubber really hit the road until about june of 2016 when we're when we're shipping these bears, but the excitement is really good to see. And Hannah,   Stacey Simms  18:22 Aaron talked about the modules and the storybooks. To unlock the original Jerry Is this the same idea with the food allergies as well,   Hannah Chung  18:31 very similar. And so kind of similar to type 1 diabetes, you know, in the way we teach type 1 diabetes is around talking about your feelings and having a vocabulary, practicing the routines to help you you know, the daily routines you have to go through. And we also have different storybooks, I've touched upon social situation that you need to know to kind of apply the concepts that you have learned in the different social settings. It's the same framework, but that was more geared to the food allergies. So checking your blood sugar level and giving insulin might be around washing your hands, it also gives me an epi pen and you have the allergy reactions of seeing how your stomach is doing and how your body parts are having whether you have hives or not. that's similar to you know, seeing what is going on in Jerry's pancreas. And we still teach the same vocabulary. Similar vocabulary is to kind of explain how you're feeling what kind of symptoms you are having at that moment. And the same thing, storybooks around birthdays or Halloween trick or cheating and things like that, that touches upon the social emotional situation that kids need to know.   Stacey Simms  19:30 You know, I probably should have asked this at the beginning of our interview, but I want to make sure to bring this and you both have a personal connection to diabetes. And Hannah, could you talk a little bit about yours you have diabetes in your family?   Hannah Chung  19:42 Yes, I do. So both my father and my grandparents have type two diabetes and they were diagnosed in their 40s and 50s. Consider late onset. Both my grandparents passed away from the complications behind type two diabetes such as heart attack and hypoglycemia shot. To be honest, I was so young at the time. When my grandfather passed away, which I was in sixth grade, and I did not know anything about type two diabetes at that point until he, I saw he passed away, my dad a year after he was diagnosed, and he decided to change his whole lifestyle to exercise more and walk 15 miles without taking pills to really adjust his lifestyle to be healthy. And from the process. Of course, I saw him, you know, feeling frustrated and feeling isolated when he did everything possible, right. And his blood sugar level was not nice at the end of the day. Yeah. So from that, our whole family decided to change our diets too, because my dad had to support my dad emotionally to make sure he's getting the cheers that he needs to go power through the day. So two months after my dad lost about 40 pounds, and even 14 years today, he's still practicing the same routine, which is really amazing. Oh, yeah. And from the process. And you know, not only I learned so much what type two diabetes, but also the importance of having the community around you who can support you, and, you know, cheer for you regardless what the outcomes were. So from there, I just learned a ton about the people who are affected by this kind of cut credit conditions and want to help kids to help support them to   Stacey Simms  21:16 Wow, what a great story of family support that you were able to really rally around him and help out and proud to be still in that routine. All these years later is fantastic. That's great. And Aaron, your story's a little different. But you know what it's like to get injections. Tell us about that.   Unknown Speaker  21:31 Yeah, so when I was a child, I had another type of endocrine condition is called human growth hormone deficiency. And so basically, my, my body wasn't producing growth hormone, at least at the typical rate. And so for a period of time, my childhood, about five years or so i, i self administered injections every day to grow. So definitely, definitely taught me a lot and gave me a lot of empathy for kind of any type of chronic condition. And, you know, certainly, certainly a learning curve, I'm so inspired by kids with, with type 1 diabetes, because they were diabetes, like a badge of honor. And for me growing up, I felt so self conscious about this, it was something that I tried to hide from everybody. And in fact, I don't think I told anybody until I was writing our first grant application, or, you know, contributing to that for Jerry to bear. And so I'm continuously inspired by the kids that we meet with type 1 diabetes, and now with with food allergies, and kind of how much confidence and how empowered they are. And so I'm so excited about what we might be able to do with Jerry tea to enhance that even further.   Stacey Simms  22:39 You've mentioned a couple times that you were in college, and you were students together, when this all came up. How do you I mean, I was in college, I didn't have any big idea like this and change the world and help families. How do you do that? Where do you like 19 years old, and you're sitting around one night, everybody else is playing beer pong. And you're like, oh, we're gonna we're gonna make this huge thing. How did that happen? What are you both majoring in? And and how did the idea come about at that time,   Unknown Speaker  23:03 so I'll say, it started very, very small. Hannah actually co founded a nonprofit organization called design for America, which is all about using design thinking, to solve problems in your local community that have some type of a social impact with the potential to scale beyond. So lots of lots of boxes to check, but really, really exciting organization. And it's totally extracurricular. So there are teams, kind of interdisciplinary teams that are formed that go out in your free time after classes to go try to solve problems, everything from you know, sanity, sanitation, inside of a homeless shelter to things like type 1 diabetes education for kids. And Hannah and I kind of rallied around this problem while we were in school, and kind of through this through this extracurricular, these activities, we slowly but surely, pursued, pursued Jerry in it, you know, at first, we never had these grand intentions of starting a company, right? This was this was a passion project. It was, oh, let's make one prototype and see what happens. And it was like, oh, maybe we should make a second one. That second one looks kind of cool. And it reached a point at prototype number three, when I was like, Well, you know, like, all of our time is kind of going into making these bears and he's just classes aren't quite as interesting anymore. Why don't we Why don't we start to make these bears full time. And so it really, you know, is a was something that was just a passion of ours that spiraled out of control and into awesomeness.   Stacey Simms  24:36 That's great. And it sound right to you. But you both did graduate, right? You didn't just dump the dump the school and go off to do the bears.   Hannah Chung  24:43 We did graduate. We did. And we physically left a little bit early. And so Aaron and I both graduated in spring of 2012. And the last quarter, we moved to Providence. We've been displaying Northwestern in Chicago. So we are taking our classes over Skype, being in Providence working very full time. So there was a pretty awesome journey to do that. But it was cool because we have, you're very transparent about how you're billing Jerry and the type of mentors you're working with. So the school was very supportive to let us continue Jerry in a really unique method that any of our other students were doing. So I think having this approach was really great. And they did mention that we have to be highlighting us doing, you know, going through this route, we have to come back to graduation in person to get our diploma, which was not a bad deal at all. Um, but yeah, to your question about what we have studied, and I studied mechanical engineering with the emphasis on Human Centered Design, but I was a very, very weird engineer, where I was not too excited about bolts and nuts. And I loved illustrating and an animation. So in mechanical engineering, we do a lot of like computer aided design. And for me, that was just illustrating in 3d for a product, which is super fun. And I also have done some research around how to build products that is emotionally appealing for kids. So I was part of the research for for a little bit while I was a student, so I was a very a soft hearted, more, you know, I love people type of engineer in the group. So and Aaron, do you have Aaron, Aaron has a cooler major than I do. So we were both studying mechanical engineering, and then in our senior year, and, you know, throughout he and Jerry, Jerry, like Aaron really got excited about robotics. And he found that that's the area that he's really passionate about. So he ended up making up his own major called mechatronics, and user interaction design, which really helps people how to play with robots and different creating different robots that is really engaging with people. So that's a major dead air and creators. So. So that's our that's our backgrounds and what we have studied so far. Wow,   Stacey Simms  26:57 this story just gets cooler and cooler. And then, and then, in 2015, this year, you guys went to the White House? How did that happen? Aaron, tell me about meeting President Obama. And he's holding Jerry the bear.   Unknown Speaker  27:12 Oh, man. Yeah, I think not. Not in my wildest dreams. Did I ever think that was gonna happen?   Unknown Speaker  27:17 Same here.   Unknown Speaker  27:19 So we had, we had gotten a very mysterious email that they were putting together an event at the at the White House to honor it was called the first ever White House Demo Day. And it was to honor entrepreneurs from from diverse backgrounds, mainly companies with founded by either other women or people of color. And so we know the first step is a phone interview. And I was super nervous. And I was actually at the time on a on a bus, mega bus from New York to Providence. And so whispering into the phone, I delivered our little pitch and hung up and just like facepalm once again, because I was like, oh, man, like, that was probably the worst mistake I ever gave. I was like whispering on a Megabus. And about maybe a week before the event we were we were told that we were selected. And so had an eye or dancing around the office, we're so excited. And just a few days before the event, we got a call from from it from an unknown number. And the voice on the other end was somebody that was that was putting together the event and they said, Hey, we had this crazy idea. Can you can you program Jerry the bear? We were like, yeah, like, you know, that's that's what we do. And they're like, Can you can you make Jerry wish President Obama Happy birthday. And we were we looked at each other. We're like, yes, like, we can do it.   Hannah Chung  28:42 As a team, we're just a guess. Do we have to say yes to and we'll figure out the rest afterwards.   Unknown Speaker  28:47 And so we we they said they couldn't guarantee any anything would happen. We put together Hannah made an awesome little animation of President Obama dancing with Jerry. We had two different voice recordings. One is Jerry wishing. The President just happy birthday. The other was Marilyn Monroe singing Happy Birthday, Mr. President. We sent those to the communications team and they totally nixed Marilyn Monroe.   Unknown Speaker  29:11 And so   Unknown Speaker  29:13 they come to me and we go to the White House, and they were about 32 companies. We weren't sure, you know, up until a few minutes before that we would actually get to get to meet the president. But luckily, there were, I believe six companies that that have the 32 that that got him to meet him. And we were one of them. And we were just ecstatic. We're like looking at each other and they're sending out aids to us that are saying, Okay, give us your pitch. Like we're there, you know, making sure that it sounded good and that we weren't gonna say anything because it was televised. We're gonna say anything that was politically incorrect. And to be honest, I'll give I'll give my perspective on the actual meeting and I'll let Hannah share hers. Everything went by and like just such a surreal blur. And I think actually the most memorable thing for me was, you know, I we kind of split split up our presentation into Can I introduce what we're doing had a carried on and talked about the impact and give a demo of Jerry, and President Obama was standing in the middle of us. And so after I kind of finished talking to him, he was interacting with Jerry. And so his back was turned to me. And all I kept thinking is how close is too close to stand? So I was just like I was trying to lean in, and I was the entire time. I was like, the thought going through my mind and like, oh, man, how close is too close?   Unknown Speaker  30:31 tackle you.   Unknown Speaker  30:31 Exactly.   Stacey Simms  30:33 And what was your perspective?   Hannah Chung  30:35 I think for me, I remember I'm kind of going along with lo and Aaron's point, you know, up until we got the confirmation that we were meeting the President, we'd never really gotten the confirmation that we're meeting the President, it was more of a higher chance to meet the president. So an hour before when we were pitching it, I realized, you know, I never gave a picture president and Aaron, I have not practiced anything about this pitch. So it was either gonna go really authentically well, or we don't. But I realized, because I was holding Jerry, I felt less stressed because I was holding a teddy bear in public and Jerry was kind of absorbing all of my nervousness from my belly to tears comforting companion, so and I felt less nervous because I was holding a teddy bear. But uh, even the demo was really cool. And I was, like, part of me was, you know, speaking really well, explaining Jerry the bear, but also just making sure that the demo goes really, really well. And there's no mistakes. And but yeah, overall, it's similar to Aaron. Everything went by so quickly. And afterwards, it took me a couple of hours to really realize, Oh, yeah, like, we just met the president. And he really liked he was impressed with Joe the bear like that. That really happens. They took it took me like a good six hours to really digest that. Oh, that didn't really happen.   Stacey Simms  31:52 Did he wind up during the bear sing? Did you get him to sing the song?   Hannah Chung  31:56 He did? And the President? Really? Yeah. He was laughing. He was laughing and he really liked it. And but yeah, but the the aftermath is really cool, though. So you know, after the event, all this articles from a lot of different big press channels are coming out. And they actually used our photo with the president and with Jerry as a main photo for almost all the articles. And so from there, we had a huge exposure about the bear and, and that was really helpful for us. Because not only, you know, we got to represent our company as one of the startup companies pushing the diversity in tech force, but also got built a lot of awareness about kids health and what Jerry does in the community. So it was a it was a very awesome event.   Stacey Simms  32:41 That's amazing. I do love the picture. We'll link that up as well. So you can you can see it at Diabetes. connections.com. Hey, before I let you both go. I have to point out we did meet a couple of years ago at friends for life when you guys are dressed up like the bears. But it turns out Aaron and I have a crazy connection. We both went to the same high school. Different years as you heard him say he graduated college in 2012. You both   Unknown Speaker  33:05 both have the same teacher.   Stacey Simms  33:06 Yeah. We have the same favorite teacher from high school, our social studies teacher, Mr. Fagin. How crazy is that? Aaron?   Unknown Speaker  33:13 Oh my gosh, it is wild. I remember, the most of the fondest memory I have of Mr. Vega was that he would wear a different sweater to class every day of the year. That's so many sweaters.   Stacey Simms  33:28 And we grew up in New York. So he needed this sweater. So it was cold. But he was I mean such a great teacher and I took his AP history classes that would you took.   Unknown Speaker  33:35 That's exactly what I took. And it was what it was one of my favorites. My sister took it and she was that was, you know, the thing that she said was, you know, you got to take Mr. Fagles history class, I was like, Okay, yeah, I didn't know what I was getting myself into. But I knew it was gonna be good.   Stacey Simms  33:47 I love it. Thank you so much for joining me today for talking about Jerry the bear. Is there anything else that you wanted to make sure to mention before I let you go,   Unknown Speaker  33:55 we're so thrilled to have had for the past couple of years, just the immense support of the diabetes community in the diabetes online community. It's, it's really alarming not alarming. It's It's comforting. It's It's awesome to feel so welcomed as outsiders coming in so quickly. And I don't know if I can relate a similar experience any other time in my life. You know, the first time we went to friends for life, it was literally like we gained a new family. And so I think we're both so incredibly grateful for that and, and so excited to kind of keep all of those all of those relationships as we enter this next chapter of Jerry's life.   Stacey Simms  34:33 That's fantastic. Thank you so much for joining me, Hannah and Aaron. I appreciate it and I can't wait to see what's next. Thanks.   Announcer: You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  34:50 More info on Jerry and Sproutel and what's next for all of them at Diabetes connections.com. I will link up some articles that take a look back and others that do take a look. forward because as I mentioned, Sproutel has several other projects that they have been successful. And it's really remarkable when you think about the the start that these guys got when they were I can't call them kids anymore when they were in college and launching something like this. And now to have it not only succeed with one product, but others and really rolling along. It's a remarkable story and I'm really excited that I got to meet them in those bear suits way back when. All right, our next episode coming out on Tuesday of next week, I am scheduled to talk to tide pool very excited to get back on the technology news. We are doing a deep dive into technology all this year on the show and title has submitted loop to the FDA. So will this be the first Do It Yourself routed initiative to get FDA approval in the United States. We'll talk about it and that episode is coming up on Tuesday. Thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I will see you back here on Tuesday. Until then, be kind to yourself.   Benny Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

As the COVID vaccine roll out continues in the United States, many people with type 1 diabetes feel like they’re in danger of being left behind. Why is this happening and what can we do about it? Hear from long-time advocate Paul Madden. He's lived with type 1 for almost 60 years and he's been fighting for the rights of people with diabetes almost as long. Stacey & Paul talk about what the science says about COVID and all types of diabetes, why the priorities are different state to state and what we can all do to be better advocates. JDRF COVID Vaccine statement/info  ADA COVID Vaccine statement/info  In our Innovations segment this week, preventing type 1 in the tiniest possible patients.. a new European study on babies and a new study about closed loop and kids. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.   Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription:   Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health, manage your blood glucose levels, increase your possibilities by Gvoke HypoPen the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:21 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:27 This week, as the COVID vaccine rollout continues here in the United States, many people with type 1 diabetes feel like they're in danger of being left behind. Why is this happening? And what can we do about   Paul Madden  0:40 The science is very clear that type one is comparable to the risk of type two diabetes, if you should happen to get COVID. And I would say make sure your governor's office knows that make sure the Department of Health knows that because we've got to change this and the science is clearly there.   Stacey Simms  1:01 That's longtime advocate Paul Madden, one of many leading the charge to get people with all types of diabetes higher up in the vaccine priority lists in every state. We'll talk about what's going on here. And action we can all take in our innovation segment this week, preventing type one and the tiniest patients, a new European studies looking at babies, and another new study this one about closed loops and kids. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.   Welcome to another week of the show, I am always so glad to have you here. We aim to educate and inspire about diabetes by sharing stories of connection with a focus on people who use insulin, my son was diagnosed with type one more than 14 years ago, he just turned 16. Recently, my husband lives with type two diabetes, I don't have diabetes of any kind. But I have a background in broadcasting. And that is how you get the podcast. And longtime listeners who have heard me say that over and over again, know that over the years, this podcast has evolved, you know, where I used to focus only on type one. And then I got a lot better educated, frankly, about the strength of the diabetes community overall, and learned that a lot of people with gestational or type two or other types of diabetes, listen to the show because of the focus on insulin use and the technology and a lot of the research. And it's topics like this one that I'm focusing on this week that really drive home, how much we have in common and how we need all hands on deck the entire diabetes community when we're talking about something like the COVID vaccine, and getting priorities in order. So I'm thrilled that our focus has kind of widened out over the years. And it's thanks to a lot of better education by listeners, you know, like you talking to me about the needs of the community. And I think people like Paul Madden, and you'll hear more about him and his advocacy coming up, really drive home how much we all need to stick together. I also want to point out if you don't already know in our Facebook group, Diabetes Connections, the group, we have an ongoing discussion and some posts about what is happening state to state I've asked people to share from their state health department what is happening where they live, so that if you want to check in, and you're not exactly sure where to find your prioritization in whatever state you live in, you can pop into Diabetes Connections, the group on Facebook and find that information out pretty quickly. And if you know the right website and your state, please come in and add it. I have to tell you about something that happened in North Carolina recently, and this became a mainstream news item where I live in North Carolina. And this was a billboard that went up I will share this in the Facebook group. And it was a billboard that went up I believe in late January. And it said Governor Roy Cooper, our governor here does not consider type 1 diabetes an underlying health issue. Think about that. That's what it says on the Billboard in late January when I believe this billboard went up. Type 1 diabetes was not considered a priority for vaccination in North Carolina. That has since changed, but a lot of people garnered a lot of attention. This billboard went up in Johnston County, which is in the eastern part of the state. It's kind of Southeast Raleigh. I don't know if it's deep enough east to be called down east, as we say here. It's not quite toward the beach or that area. I believe there is an Ava Gardner Museum though, in Johnston County. That's kind of its claim to fame. As far as I know. Please don't correct me on that. You can you can correct me if you want on that. Send me your Johnston county emails, but really interesting stuff that somebody paid for it. The billboard company was contacted by the media outlet that did the story here was a Raleigh TV station and they said this isn't an anonymous person who bought the ad space. All I know, they said is what's in the message. But since that billboard went up, and I think it's still up, things have changed. People with type one and type two are now in what they're calling group four here adults at increased risk of severe illness. As of this taping, I'm taping this on February 19. We are on group three frontline essential workers so Hopefully we will get to people with diabetes and others with severe illness who are under the age of 65. And don't fit the other groups pretty soon. I don't know, maybe by mid to late March, but it is really a moving target. And I think that's important to keep in mind as you listen to this interview. And you think about this discussion. I talked to Paul this week. And as I am taping on the 19th, everything he said, is still in effect, but it could change by the time this episode is released, which is February 23. So if you're listening to this live on that date, I will post on social media if things change and of course, come visit the Facebook group to find out more of what's happening in your state. I'm optimistic that type one is going to move up as people get better educated and advocacy steps up across the country. But you know, it is a moving target like much of the vaccinations across this country. Alright, Paul Madden, and what you can do coming up in just a moment, but first Diabetes Connections is brought to you by Dario. Health. You know, one of the things that makes diabetes management difficult for us. I mean, that really annoys me and Benny, it's not really the big picture stuff. It's the little thing that's all the little tasks adding up. Are you sick of running strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my dario.com forward slash Diabetes Connections.   My guest this week is probably one of the busiest people in the diabetes landscape that you will ever meet. He really has. I don't think he's done at all. But oh my gosh, Paul Madden has been on the frontline of advocacy for a very long time. He worked for 30 years at the Joslin Diabetes Center in Boston. He also worked at Johnson and Johnson with Animas, he has been part leadership roles at children with diabetes. He's been a part of the diabetes education and camping Association, the Association of diabetes educators had a large leadership role advocating specifically for people with type one at the American Diabetes Association. And he spoke last year, you might have seen him he was at the White House announcement on insulin pricing. Paul was diagnosed with type one when he was nine years old. And that was almost 60 years ago. And he talks a little bit about that in my interview with him. But I have seen Paul on social media advocating for the COVID vaccine prioritization for people with type one. So I reached out and I was really happy that he agreed and had time to join me. This is also a video interview, it's over on the YouTube channel. And I'll link that up in the show notes. If you would prefer to watch that the video is a little bit different. It is a little bit longer. And you will see exactly what we're referring to here right at the beginning. But you can certainly listen to it just as easily. You're not going to miss anything. If you just listen to my interview with Paul Madden. Paul, thank you so much for joining me.   Paul Madden  8:01 Stacey . I've watched your podcasts and I know that you're getting right information out to us all and our diabetes world all 34 plus million of us here in the US. Yeah,   Stacey Simms  8:11 well, I appreciate that. I'm grateful that it's generally an audio podcast with these video segments put in because as you can see, my production is sometimes a little wonky. We hit this at the exact right time for the sun to be setting on my window. So we've got some interesting stripes on me with the light. But we'll work around that. Yes. You're here because you have so much great information about type one advocacy, specifically right now around the COVID vaccine and prioritization. Let's just take a step back. Can you talk a little bit about the situation? We are in the middle to late February at the moment where things stand? I mean, the US has a bunch of different policies where things stand for people with type one right   Paul Madden  8:49 now. Yeah, I'll give you a couple of scenarios of where it stands right now, Stacey . And regrettably, we can't define it well for every state without going into this state COVID Medical policy, but generally the CDC put out their announcements, and they said something to the effect. I won't quote them, but I'll paraphrase. But they did recognize that type two diabetes was a higher risk and a priority for earlier vaccinations. And that is very correct. Unfortunately, their wording for type one was far more nebulous, far less clear. And they said that for type one insulin dependent diabetes, we suspect it could be a higher risk. Now the challenge is, as you know, Stacey , we have approximately 1.6 million people in the US with active type 1 diabetes of all ages, you older guys and gals and folks like me, and very young little babies, little kids and all the way in between the type two population. It's over 32 million and so very quickly within the first few months of COVID, after February, March, they saw the data from the hospitals from the treatment centers, the ICU that said, Wow, type two diabetes is about a 3.3 times greater risk of serious complications than the citizen without diabetes. So they correctly log that in there, unfortunately, and we're saddened by the fact and I and others, it's it's never alone. It's always a group of us. But I reached out to the ADA, the JDRF, the the diabetes patient advocacy coalition, the leadership and diabetes group, and I children with diabetes, a group that you and I know, well. And 18 groups finally signed on when we sent a letter to Dr. Redfield, who was in charge of CDC. And we said, Please, sir, there's some new data, some new science that started to come out beautiful science in November, December, and a new article just came out in January to say, type one? Absolutely. If you give COVID Is it the same high risk level and one study imply there could be a little bit higher risk than type two? So six states have made the change? And have said, Absolutely, let's do it. Some states haven't defined type one and type two in their state policy, because remember, the CDC allowed the states to determine who gets the vaccinations on their state schedules, I got involved very much in Massachusetts, because unfortunately, they did distinguish, and they still have not changed the Priority Ranking for type one. And we're very discouraged by that. very discouraged. So the type one population, our kids get no priority. If you're over 65, we can now start to get it just because of our age tomorrow. But that's not enough. We've got to get all people with type 1 diabetes at the same Priority Ranking for vaccinations. So that's what we dug in, we're trying to get, we have a sense that we're going to get a meeting with the COVID Committee, the medical leaders here in Massachusetts, I know others are doing the same. So we only again, know of six states that have put type one in with type two. But as I'm talking to more and more advocates throughout our country, I'm learning that some again, like I said earlier don't distinguish. And they allow type one and type two to be together both as a high priority ranking. But we don't think that's more than about 20 to 25% of our states. And we don't have a definite number on that. So we got to keep pushing.   Stacey Simms  12:38 I'm in North Carolina, as you know, and they did not first but they did slide type one up. And you know, a question that came up early on. And again, we want it to all be the same we want, again, we want that type one higher, but who would check and what a burden to kind of put on these health care workers who are giving vaccinations? I mean, I get it, if you're going up to kids, if you're a 12 year old, they're gonna say type two. But if you're 40, is someone going to be standing there saying, Well, what type do you have? What's your a one? See, show me your insulin pump? You know, it just seemed to put a burden on folks.   Paul Madden  13:12 Yeah, we certainly did with this. You know, we haven't done this, as you know, since the Spanish Flu 1918. But none of us were around, you know, maybe 30 people around, but they can't really relay the story very well. They were three years old.   Stacey Simms  13:27 And I hate to use a little dark humor. But people with type 1 diabetes were not included. They hadn't even figured out insulin at the last time   Paul Madden  13:34 we checked I was pretty insulin era. Exactly, exactly. Right. So we've got to keep pushing and you know it Stacey  advocacy. And for everyone who's participating in this advocacy is about getting the science clear. Having good backing, making sure you have some spokespersons from healthcare who are specialists in diabetes. I am a psychologist. I'm a diabetes educator. I know my diabetes, my personal diabetes of 59 plus years, and I've been an educator in it for 47 years, so I know it well. But I also realized that I often need to make sure I've got several physicians and other healthcare providers lined up and that we have done. Several people that have said, Yes, the Joslin clinic came roaring through and said, What do you need from us? We've got it. And they just sent me another article today that I can submit to the governor's office and the COVID Committee. And that's the type of things that we have to do. There's not enough people that get paid to be advocates. And I want to stress that and I wish that there were and I know the diabetes organizations wish they they had so much money that they could easily hire more people to do these things. So it really relies on us. The volunteers also offered to put the pieces together again working though, and supporting those diabetes health care providers.   Stacey Simms  15:00 So if someone isn't an individual, they're not affiliated with a formal advocacy group, and they're in a state like Massachusetts or another state where they haven't put the type one priority higher. What do you do? What do you call?   Stacey Simms  15:18 Right back to Paul answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen. And you know, almost everybody who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's what Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go. With no visible needle. That means it's easy to use in usability studies, 99% of people were able to give Gvoke  correctly, I'm so glad to have something new, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon.com slash risk. Now back to Paul Madden answering my question of what are we supposed to do? Who do you call?   Paul Madden  16:08 Yeah, I think most people bombard their diabetes specialist team phone number and email which was by the young people especially. And typically, the diabetes professionals in our states know who the advocates are. And if they don't, and they're seeing this, I want to encourage you to find out who your your statewide volunteer advocates are, and know the people from JDRF, from ADA, from the diabetes, DPAC group, patient advocacy coalition. They're quite a remarkable group. This is to pay staff and a bunch of wonderful volunteers, some very top senior business leaders who have been in diabetes for a long time, including the nonprofit world in diabetes, and they volunteered their time for this. So your medical professional should know. And then we the people living with diabetes should get to know these advocates also, because there will be other issues. This is a big one right now. But there's other big issues, the whole reimbursement, the medical switching, all of these things that make no sense whatsoever.   Stacey Simms  17:14 Yeah. so in this situation, though, you would think it's better to call the people that are already working on it, rather than your congressman or your health department, or things like that?   Paul Madden  17:24 Well, no, I think rather to coordinate with the people that are already working on it. But no, Stacey , you bring up a great point here, you and I and all of us have to be wonderful employers. And by that I mean, our state representatives, our federal senators and representatives, they work for us whether or not you voted for them, they are in office and taxpayer dollars, pay their salaries and benefits packages. And again, we've got to be a cooperative employee, employer, but we they do work for us. And we have to make sure they understand that this is a priority for 1.6 million people in the United States that live with diabetes. Absolutely. Yeah.   Stacey Simms  18:08 I don't know if you can answer this. But I'm curious. Do you think that when the CDC put out those guidelines, and when states like Massachusetts aren't listening to advocates like yourself? I think not taking type 1 seriously? Do they maybe not understand it? They don't they think it's just kids? What do you think's going on?   Paul Madden  18:26 Yeah, so maybe it's not a full understanding, but that the medical experts on the COVID committees, typically, and I'll speak for Mass. These are good doctors. Yeah, they know medicine, but they also are not diabetes specialist. And the thing again, I'll go back to the does hinder us some, when you're trying to collect quick data on a crisis like this a COVID crisis, it takes five to six months to get enough, a big enough and a big enough group of people with type 1 diabetes that have had COVID. I respect that they went after this from the very beginning with What does healthcare show us? What does the what's the medical condition? Because we got to rank order this I appreciate that I even though I'm a psychologist, I always go after what's the medicine say first before I start to speak, and I surround myself with bright people who are endocrinologist who are brilliant research scientists, and they share things with me so I can understand it. And I can pass it along. But we've got to get the message. I tell you what I think is happening. This is a frightening crisis financially, for every state for an awful lot of good families. Some adults are out of jobs for the first time in their lives. And maybe they have a child and maybe even two children that happened to have diabetes or some other added concern that costs a lot of money. Sometimes, you know, some people have gone into more of a survival and I respect that and we are in a survival state of mind. It's hard to process more information coming in. And I'm aware that there are many groups right now approaching and I'll speak specifically for mass COVID. Committee, but it's all of the committee's in every state of saying, How come my condition is not a priority? How come this is not a priority. And I just would say to all of us that our diabetes will stick with the science, get medical people aligned with you. I remain very discouraged right now. But I remain very positive in the way I state things, because we must change this. And that has to change soon. I think the committee's are sometimes so overwhelmed with so many emails, and so many calls. And that's why I go to groups like Joslin, like Harvard for their backing. And I've pulled called in a colleague who was a good friend of a friend who knows the governor. So we're doing those types of things that we all of us will know someone who knows someone. And boy, you got to do that you have to win advocacy work? Yeah.   Stacey Simms  21:08 It's difficult to say the least I'm glad. I mean, I know how I would want to prioritize it. But I'm glad I'm not the person who has to prioritize it.   Paul Madden  21:17 Very challenging, difficult. And that's why they can put a little bit of a protection in front of themselves by saying, we understand the science clearly says this now. So now we must change this. And if you stay on the science, and that's it, the science will guide you with the wisest of decisions. Yeah.   Stacey Simms  21:37 I'm curious, Paul. And we will probably talk more about vaccinations as we go forward here. But how have you been this last year? You know,what have you been up to? I see all of your conference tags behind you. Obviously, we haven't been going to those conferences. How are you all doing?   Paul Madden  21:53 Yeah, I you know, it's challenging for me. And let me personalize it. It's challenging, challenging for me, for my sister's family, my brother's family, for cousins, all of us. We've actually done some zoom calls with cousins. Who ever would have thought I would have done that I would have just driven you know, 50 miles away to see my cousin. Right. early on. I you know, I had launched my business in after going into semi retirement and we had some family, a family challenge with a health issue with a wonderful loving family member. So I decided, oh, she's 68 years old, you can step back a little bit and focus more on family right now. And I appreciate that I had that that luxury, truly do. But then I realized and he's doing great. cancer free for the first time in over a year after seven years of dealing with a challenging cancer. So we are so blessed. And I realized, oh boy, you better get going. So I launched my business in January of last year. 2020. Wow. Robust February, and then the day flew home from the diabetes technology meetings in Madrid. I saw in a CNN screen in English, the first case of Corona Coronavirus, identified in Madrid, I had no idea what that meant. The last Sunday in February. Wow. What did I know that four to five weeks later, because I've had diabetes for so many years. Because I am over 65. I said, I just took a breath and said, You know what? You need to shut down. I certainly kept doing some present zoom presentations, some FDA work and all of that. But I really basically shut down what I was doing. You know,   Stacey Simms  23:34 from your perspective, you're much more dialed into this. Is this a question of sit tight, it's coming, push where you can? Or is there a voice in your head saying this is gonna take forever? We're not gonna get people with diabetes vaccinated until summer, or later, or? I'm not sure what I'm asking Paul. But I'm just sometimes I could lay awake at night and worry.   Paul Madden  23:51 Yeah. And so they're opening it up for me at over 65 tomorrow in Massachusetts. So I'll get it the first one within the next three to four or five weeks. Okay, at least I have an identified timeline now. But I do worry about the rest of my younger friends. I do. And I would say again, you are and this is on a state level. Now, your state senators and state representatives work for you. The science is very clear. That type one is comparable to the risk of type two diabetes, if you should happen to get COVID. And I would say make sure your governor's office knows that. Make sure the Department of Health knows that and absolutely call and ask your state senator and state representatives to work on your behalf or your loved ones behalf because we've got to change this. And the science is clearly there. It's on the ADA web page. It's on the JDRF web page. And clearly you can get a hold of the science and you look up COVID and diabetes right now. Did this morning, and some of the more prominent good studies are listed, including now to type 1 diabetes to   Stacey Simms  25:07 show wonder, I don't know if I agree with this, but I've heard a few people say that one of the issues was almost self created by at the very beginning of the pandemic, people feeling that there. And maybe it's because there wasn't enough information, but that people with type one who got COVID did not have as serious cases as people with type two, and somehow separating that out and saying, It's okay, we're gonna be okay. We don't have to worry as much because I remember seeing those posts back then. But as you're saying, the science doesn't bear that   Paul Madden  25:35 out. If you get it, you know, if you have type one or type two diabetes, there's no you have no greater chance of getting coke. Right, you know, thank goodness, so, so mass, washing hands, social distancing, all those things are crucial. And I just say to everyone hang in, the light is at the end of the tunnel in the months ahead, and I want to shorten it to a few months, not several more months. And that's why I'm saying for people with diabetes, and for our loved ones, you know, and maybe it's your neighbor, it's three houses down, who signed, married, the governor's daughter, I don't care what the connection is. It's been important our health, it really is. And that's networking at the fullest. And it's amazing to me, some of that my grandmother, one of my grandma's was an incredible network. And I think I probably got it from her and then passed along by my mother. You know, that's what you've got to do right now.   Stacey Simms  26:30 I'm curious to you know, do you think going forward, there are any lessons in this for the diabetes, the whole diabetes community, not just type one and lessons and all this?   Paul Madden  26:40 Yeah. So I think there are a couple of lessons and thanks for asking. I think the lessons are that, based on the science, standing together, we can change wrong agendas throughout our country relative to diabetes care. In this case, I mean, care for COVID prevention, vaccination, but for everything, and I need it for every new technology and drug that gets out there. If we stand together, just because you get the CGM. And if your other friend who's a senior or 12 years old, doesn't have the CGM help push for them. We are one family of 34 plus million people with type one or type two diabetes. I know the rest have distinct differences. But there's a lot of commonalities. And together that's an awful lot of votes for anyone who is serious about continuing in the political world. And I think we have to approach it like that. And it is a question of the blunt statement, the quality and quantity of one because Paul Madden has had access I had like like you and your family does with your son. I have been blessed. My mother and father knew nothing. When I was diagnosed. 59 years ago, there were under 3 million people in this country with diabetes. Wow. And it was it was closer to two is what I'm told, right? 34 plus million now. It's unbelievable. So diabetes really wasn't discussed. In fact, it was all the poor kid. He's got it. Yeah. Because people didn't survive. And my mother and father with my medical team at you have and I will say and we had a family practitioner, he diagnosed it. I was nine years old. I was peeing the bed like Niagara Falls.   I didn't know what was going on. And my sheets actually were sticky. So yes, folks, there is sugar in the urine. And I was heartbroken and I dropped 10 pounds. It was a healthy little boy. I would drop 10 pounds in five or six days. And the family doc said to my parents I was in the room and he said Mr. Mrs. Madden, Paul, I don't do diabetes and children, but the Joslin clinic is 15 miles away, and I'm gonna make a referral over there. And hallelujah for the next 30 years Dr. Leo Kroll and his team at Joslin imprinted on me beautifully on my parents, you know, my father walked me out into the courts when I was I guess it was 10 at that point, my first full summer with diabetes and walked me on the court to  meet Bill Talbert, the first professional and the first athlete ever that was named number one or two in the world that happened to have insulin dependent diabetes, Bill & I became good friends for the next almost 50 years before bill passed in his late 80s. But that was the exposure my parents made sure I got and that's that's what all of you have to do to to the best of your ability. You know, one reason I have stepped down after two terms in six years on the children with diabetes board, I just tell everyone and as you know, Stacey , it's it's we call it children with diabetes, but approximately half of the people come now are adults with type 1 diabetes. And I forget the numbers, Jeff Hitchcock sentences that over 5000 people did the Virtual Education because we couldn't meet in person. Oh, it was amazing. It was amazing. And you will find that yes, absolutely. But the camaraderie you get from that, and we bring in some of the finest speakers in the world who say yes. And typically they do it for free. That's unbelievable. They fly from all over. And not just sometimes the US from other countries even, you know, so it's that type of cost and peer support, because let's face it, kids with diabetes don't live there. They don't probably don't have six other neighbors in their neighborhood that are also kids with diabetes. No, no, do us adults who have type one diabetes, I don't know anyone who lives within three miles of me, that's not fair. I do know one gentleman who's had type 1 diabetes for 65 years. And we've known each other for 50 plus years. But other than that, I don't know who else has type 1 diabetes in the neighborhood. So Martin, and I go off a walk sometimes. And it's an absolute pleasure. And we do support each other. And it's the power of support when you're dealing with something you wish the heck you didn't have. And you know, you got to move through it. So you have the fullest, most robust and the happiest of lives, that peer support can be rather powerful. That's why I think a well run diabetes camp, I think, the support education groups at some of the organizations. That's why I think the podcasts are so crucial. I think things like this station that you and others are doing consistently, a very powerful to convey information. And again, you and I know as long as people remember that Paul said, what he does with his diabetes, gives me great results. Yeah, but remember, folks, I do it with my medical team who's coached me and always coach me. And if I ever had a problem, I can't figure out the answer to what I do. I'm a diabetes educator. But but when it's a personal thing, you don't stay as objective and you don't sometimes pull out all the science, right? When you're talking about yourself or thinking about yourself, I pick up the phone, and the young people probably send the email more frequently than I do. That's okay. Whatever your line of communication is, that's the important thing to promote the most robust health so that diabetes is an element of your life, but never hinders your life. That's the goal. That's the goal.   Stacey Simms  32:30 Paul, thank you so much. I could talk to you all day. You're inspiring on an I don't know, I'm gonna probably regret saying this. But you are inspiring on kind of like an everyday getting it done. level. You know, you and I are not people that are going to go up Mount Everest, I don't think you've been at Mount Everest.   Paul Madden  32:47 You know, I have a few merits. I know, I'm not gonna do Everest. I'll leave that to the world crushes.   Stacey Simms  32:56 But I just love it. And I'm so glad to hear your family members doing better than doing well. So stay well. Keep us posted. Thank you for your incredible advocacy. And let's follow up as more information comes in and you go give them Helen, Massachusetts, Paul.   Paul Madden  33:11 Absolutely. Listening, call your state reps and Saturdays, please. Thanks.   Unknown Speaker  33:23 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  33:29 More information about Paul and about the COVID vaccine and what we can do, and more advocacy from the groups that he mentioned. I'll put that all in the show notes at Diabetes, Connections comm you can always find the episode homepage there. I always say this, but it's a little difficult sometimes in the podcast apps to find the links. So if you have any trouble, just head on back to the homepage, and it is always there for you. I want to make this as easy as possible. So if there's a better way to do it, or you need more info, always contact me Stacey  at Diabetes connections.com. We're going to talk about a new study looking at prevention of type one by focusing on babies. And a new study that I gotta tell you is a no duh. I mean, who was surprised by this kind of study, but that's coming up in just a moment. First, Diabetes Connections is brought to you by Dexcom. And do you know about Dexcom clarity, this is their diabetes management software. And for a long time, I just thought it was something our endo used, you can use it on both the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I check it about once a week. And it really helps me and Benny just dial back and see longer term trends helps us not overreact to what happened for just one day, or even just one hour. The overlay reports help put context to Benny's glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us. Find out more at Diabetes connections.com and click on the Dexcom logo.   Our innovations segment this week features a couple of studies that focus on kids. And this very first one is really for the tiniest in the diabetes community. It's a study that just started and it's looking at the correlation of the antibodies that appear in people with type 1 diabetes, as well as intestinal flora in early childhood. So basically, what the heck is going on in the gut in people who go on to develop type 1 diabetes, the study, and I'm not sure I'm pronouncing it correctly, I'll link it up with a study is center one, a si en T one, a. And it's going to start in the spring this year, in a few European countries, as part of an international initiative to prevent type 1 diabetes, it follows another study that they're all doing called point, which is administering insulin orally in the hopes that it would somehow it says your train and sensitize the immune system at an early stage so that auto immunity against insulin does not occur. So if the results were both studies show what they're hoping they're going to combine them for what they hope will be a type one prevention strategy, really interesting stuff. And I will link up this study. Again, it's not open here in the States. This is happening in Europe, but really interesting study. And I will link up more information. Again, it's happening in Europe. So it's not open for people in the United States to take part in. But hey, I'll keep you posted. The other study I want to talk about this week, and I mentioned this earlier in the show as like a real Hey, no duh type moment. But hey, these things have to be studied. I will read from the endocrinology network where I saw this written up, and they say, a closed loop control insulin delivery system could be safe and effective for use in adolescents and young adults with type one diabetes, according to the results of the International diabetes closed loop trial. Shockingly, I added that results of the study indicated use of a closed loop control for six months resulted in improved time and range and reduced incidence of hyperglycemia. In younger patients with type one diabetes, I shouldn't get around because they do need to prove these things. We do need to you know, make sure that there is clinical evidence before we move forward. But you as you listen, know, many of you have been doing DIY for many years, and you know this to be the case, I will make it up. Interestingly, as in most of these studies, the biggest improvement was in overnights, right, a lot less overnight, low blood sugar hypoglycemia, which is amazing. And I can tell you just from experience with Benny on what I call a hybrid closed loop, but Tandem is control IQ is one of those used in this study. So they're calling a closed loop. But I mean, he wakes up almost every morning, not only in range, but he wakes up almost every morning between 90 and 115. I mean, you know, for a 16 year old, it's pretty amazing. And I think that overnight sleep for everybody, it gets so much better. And that in and of itself is such a great health benefit. So I'll leave that study up as well. Next week, we're gonna be circling back to tell me something good. So I need your good stuff for the show. You can hit me up Stacey  at Diabetes connections.com. I will post to the Facebook group and I'd love to hear what's going on that you want to celebrate. Okay, before I let you go, I need to let you know that this was really weird. I had a crazy low blood sugar in the middle of this episode. Right after the dex comment that you heard. I pressed pause and I was feeling shaky and sweaty and I really was having trouble getting through it. I went downstairs and I checked my blood sugar with one of Benny's meters. And it was 46.  So I scurried around and got some peanut butter crackers, I probably should have had a juice box, I wasn't really thinking clearly shockingly. And I sat down and ate the crackers and waited for my blood sugar to come up. And boy, I gotta tell you, it's no shock to most of you. I was so hungry after that. And we're about half an hour away from dinner and slaves making a great dinner and I was so hungry, but I waited. And now I'm upstairs again, where my office is recording the podcast. It's not the first time that I've had a low blood sugar like that, that I've measured it that low. And I've talked to my doctor about it, I actually had a low blood sugar, the first time that I remember really measuring it several years ago at friends for life. And I checked it in the middle of the vendor Hall and it was it was in the 40s. And of course you know, you've got what a great place to have a low if Rudy was bringing me gummies and tabs and taking care of me. But you know, again, I don't have diabetes. And I don't have I don't think this is the right name for it. But I don't have like chronic hypoglycemia or anything dangerous. My doctor just has told me that I'm the kind of person that needs to eat every couple of hours and I need to be careful that I don't just eat empty carbs during the day that lunch and breakfast, have protein and all that good stuff. So today for the first time in a long time. I had a lunch that was not smart and it was delicious, but it was very carb heavy and I've been eating really lower carb for the last couple of months. So I just didn't have a lot of stuff in the house. Slade was at the grocery store. I had cheese blintzes for lunch. They were delicious. I'm not sure if they were working 46 blood sugar a couple of hours later, but there you go. So True Confessions all man, low blood sugars, they just suck. They feel like garbage. And I'm really happy that I'm feeling better. But I was sweating and low and shaky. And I think that feeling of wanting to eat everything after it's so difficult, I will follow up if I need to. I take very good care of my health and I take these things seriously. But I wanted to let you know that that happened while I was taping the show. How weird All right, a classic episode coming up in just a couple of days. We're gonna be taking a look back at Jerry the bear. And this is not during the bear as you know him today. This is a much earlier incarnation of Jerry and the great people who created him. It was so much fun to talk to them five years ago now man, I love these classic episodes. I hope you're enjoying them.   Stacey Simms  40:48 Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days. Until then, be kind to yourself.   Benny  41:03 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Ernie Prado was diagnosed with type 1 as a teenager and is now a project engineer at NASA. He has a terrific story and it's not exactly what you'd expect. Ernie wasn't a diabetes superstar who lived a perfect diabetes life all along. We're so grateful he was generous enough to share the real story! This is our first in a new series of "Classic Episodes." In addition to our regular Tuesday episodes, we'll bring you an additional episode like this every Thursday. What’s a classic episode? It’s an interview that aired a long time ago but isn't dated in a way that takes away from the experience. We’ve been around for a while, so there’s a good chance you missed some of these back in 2015 or 2016. Stacey first spoke to Ernie Prado in 2016 and he's now the Project Engineer for something called the Super Guppy. He says it transports outsize spaceflight cargo in support of Artemis which will take the first woman and next man to the moon. Check it out here Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription: Stacey Simms  0:00 This episode of Diabetes Connections is brought to you by Inside the Breakthrough, a new history of science podcast full of digital stuff with quite a few laughs along the way.   Announcer  0:15 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:21 Welcome to a Classic episode of Diabetes Connections, something a little new this year. But as always, we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. I am your host, Stacey Simms, and I am really glad that you are here. So I said something new starting this week in 2021. In addition to our regular Tuesday episodes, I'm going to be bringing you an additional episode like this on Thursdays. So what is a classic episode, it is an interview that has already aired a long time ago, but it is still what we would call evergreen. It's not dated in a way that takes away from listening to it. Now we have a lot of episodes. We've been around for a while. So there is a good chance that you missed some of these interviews back in 2015, or 2016. And these are really interesting, fun people and I wanted to bring their stories to a wider audience. This week, you are going to hear the story of a NASA engineer, a rocket scientist who lives with type one. Ernie Prado has a really great story. But it's not exactly what you would expect. He wasn't a diabetes superstar who lived a perfect diabetes life all along. And I'm really grateful that he was generous enough to share the real story you will hear from Ernie in just a moment. But first, these classic episodes are brought to you by a brand new podcast. And this is pretty cool to have a sponsor who is also a podcast. So let me tell you all about this. This is inside the breakthrough. A new history of science podcast full of Did you know stuff like did you know Henry Ford and Thomas Edison were really good buddies. They even work together on an electric car, and it still failed. Episode One dives into stories including Archimedes yelling Eureka while naked in the streets and Alexander Fleming's discovery of penicillin by accident inside the breakthrough was created by SciMar SciMar is a group of Canadian researchers dedicated to changing the way we detect, treat and even reverse type two diabetes. This show is historical wisdom mixed with modern insight with quite a few laughs along the way. I've listened to it. It's a great show really high production value, great host and great information search for inside the breakthrough anywhere you listen to podcasts and at Diabetes connections.com. It has been almost five years since I first spoke to Ernie. What is he doing now? He is the project engineer for something called the super Guppy. It sounds funny, but this thing is really amazing. I'll put a photo and a story behind it in the Diabetes Connections Facebook group, Ernie tells me it transports outsize spaceflight cargo in support of Artemis, which will take the first woman and next man to the moon. So pretty important job really interesting stuff. And I think as you listen to this interview, you'll see that Ernie is really where he wants to be. Please remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. So here is my interview with NASA's Ernie Prado from June of 2016. Ernie, thank you so much for making some time to talk to me today. I really appreciate it. Yeah, before we get to the rocket science and NASA and everything that's going on now, take me back to the beginning you were diagnosed with Type One Diabetes at the age of 15. Did you know at that point, that you wanted to have some kind of career with the space program?   Ernie Prado  3:55 Oh, yeah. So my life goal, I guess when I was younger, I was always drawn to space and airplanes. And my mom said, I cry if I didn't watch Star Trek when I was like four. So I wanted to be an astronaut. And before that I wanted to be a fighter pilot and fly f 18. So I was always drawn towards this and my goal was to end up in space.   Stacey Simms  4:18 Well, you were diagnosed, as I said, age 15. The diagnosis was about, let's say 15 years ago, you're you're 29 you're 30   Ernie Prado  4:26 Yeah, it's half half my life now. Yeah. Um,   Stacey Simms  4:31 what did the doctor tell you at that point was that you have type one. And you're never going to do these things that you always wanted to do? Or was it a little bit more kind?   Ernie Prado  4:41 So actually, the past few months, I've been trying to figure out the exact date I was diagnosed just because, you know, I've been reading about folks and a lot of folks have a die of diversity. And I kind of was trying to figure out mine. And I've been thinking about that actually contacted the hospital. And unfortunately, I don't have the records. More, but I don't remember the doctor saying, you know, you're not gonna be able to do a lot of this. I feel like I've encountered more that, you know, outside of maybe the medical community. So I've been lucky enough to take part in a medical study from with FA and utmb about trying to get folks of chronic conditions like diabetes into space through companies like Virgin Galactic, and XCOR. And so I got to go into centrifuge. And that's pretty cool thing for diabetics to do. I did encounter some resistance when I was trying to become a flight controller. And so at the time, I had other projects coming up, so I kind of, you know, let that go to the wayside. But I haven't stopped me from doing most of the things I wanted to do. Maybe a few, but I try to find ways around it and still do them anyway.   Stacey Simms  5:52 Yeah, and I want to talk more about that. I'm just trying to kind of figure out what this was like for teenage you. Because that's a tough time anyway, and to be diagnosed at age 15. When you're hopefully, you know, you're busy with a lot of other things. Do you remember what it was like at that point in your life to make that kind of change?   Ernie Prado  6:10 Yeah, it was really hard, actually. So I came to accept that a lot more about the time I was 18. I was about three years after those first three years were a little bit difficult. Because, unfortunately, and you know, I love my mom to death, but she kind of told me not to talk about my diabetes, and to not let people know I had it. And over the years, I've realized that was a little bit, not probably not the best method to approach it. And so I dealt with it on my own a lot or just with support at home and from my family. You know,   Stacey Simms  6:44 I'm sorry to interrupt. I've heard that from other people that at, it seems like a better idea to try to avoid discrimination, ignorance by kind of just keeping it to yourself, is that maybe what your mother was trying to do?   Ernie Prado  6:59 I think so. And, you know, I think she did with the best intentions. But it was, it was really difficult to not talk about something that I considered So in general, about myself, because it was kind of thrust on me and said, hey, you're earning now you're diabetic, and, you know, it was through no fault of my own, it just happened. So it would be the same thing, as you know, having like a really strong interest in you know, like space, I wouldn't be able to hide that. I didn't want to hide the fact that I was out back. When I got to college, I started telling everybody and you know, I've continued that. But it was difficult, you know, to try to explain why I wasn't eating certain things around my friends, or why couldn't go out sometimes, or why I had to stop playing football and wrestling and all that. So it was a, I'd say it was a pretty good difficult time in my teenage years.   Stacey Simms  7:49 And you had to stop playing sports was that because of I'm gonna just guess, because your mom was not comfortable? Or was it something that happened?   Ernie Prado  7:57 Yeah, partly that. And my first doctor, I think, you know, in the abundance of caution said, you know, you might want to take it off for a little bit and learn about your diabetes and how to manage it. And it might have been understood as he shouldn't be playing sports anymore. But depressing. Yeah.   Stacey Simms  8:18 Well, okay, so you get to college. You're you. You're telling everybody you have diabetes, what you study in college, were you now going ahead with the engineering with the career in space program?   Ernie Prado  8:31 Yeah, absolutely. So when I got to college, actually declared my major before getting except for as soon as I got accepted, I believe. And I chose to pursue a double major in aeronautical sciences and engineering, and then mechanical engineering. Because I figured, you know, if maybe right now, I can't fly, or do what I want. I'm going to get involved somehow at NASA. And luckily enough, it ended working out. And I kept my majors throughout. And I tried to add a minor and do some pre med stuff, but I ran out of time and money, so I didn't get that.   Stacey Simms  9:03 And were you able to go to work for NASA right away? Where'd you go to work? Um,   Ernie Prado  9:08 so yeah, I was very fortunate. I began working at NASA as a co op at the age of 20. So it was my sophomore year in college, and I've been here since. So it's been about eight and a half a while on this cluster nine years. I've been out here. And so full time for about a little over five years now, though, for the first few years, I went between school and working here at Johnson Space Center. And I think in total of my college time was about a year and a half out here. So I really got my degrees in about three and a half years. Although I was in Davis for five years.   Stacey Simms  9:39 What was it like? And maybe this moment happened when you were as you said, you were 20 and you went to work there but you're still in college, or maybe it happened after? What was it like when you walked into NASA and realized I am going to be here, at least in this capacity.   Ernie Prado  9:55 So I'm kind of smiling like I believe right now. Remember that first day I mean, I'd never been to Johnson Space Center before, you know, being hired here. I've been at Kennedy Space Center with my dad, that was my graduation gift from high school, he took me there and in his big truck, and we tried to see a launch of, I believe, is STS 114, which was returned to fly and Stephen Robinson was going to launch that mission, which he was an Aggie from UC Davis. And that's where I was going to school. Then hurricane Ernesto roll through, me and my dad are both named Ernesto, and it hit a lightning tower. So they delayed the launch, and I didn't get to see it. But then, you know, a few years down the road, showing up here and saying, Man, I'm walking the same like ground, the astronauts have walked in flight controllers, and all these people in history. It was this really cool sense of I can't believe it. And I still kind of get that pretty often. It's a really cool job.   Stacey Simms  10:55 It's so amazing when you get to do the things you've always wanted to do. That's a great story. I love hearing that. I was reading an article that the writer and author Moira McCarthy wrote about you more has been on the show a couple of times already. And she talked about I guess you told her, there was a point at which you realize that, you know, diabetes was something that you needed to kind of pay more attention to, during your time at NASA. Can you tell me a little bit about that?   Ernie Prado  11:29 Yeah, so I guess that happened. Because I was working at the NBL, which is the Neutral Buoyancy Laboratory. It's our big environment for it was a gigantic pool, 6.2 million gallons. And it's the environment where we train astronauts at a spacewalk. Typically, if you're a co-op, in that building, you as a guest, at the end of your rotation, you get to dive in this big pool, which has a mock up of the space station in it. So it's this amazing, cool, cool thing to do. And my A1C was at 13.9. so incredibly high. I wasn't taking care of myself, just because I was stressed at school and more focused on getting good grades and kind of in a, I knew I had to diabetes, and I couldn't get rid of it. But I guess, and even though I told people, I wasn't accepting it, so my mindset was, well, you know, if I don't think about it, I don't have to deal with it. And that was a very poor mindset to have. So once they told me, Well, you know, your sugar is not controlled, you're not gonna be able to dive in this pool. I was, it was kind of a wake up call. And I was going to Well, that's a real bummer, because I don't know if I'll ever get to be here again. Or if I have this opportunity again. And so unfortunately, I didn't get to dive in the pool. But I had a very cool boss, he said, Well, you're still scuba certified. And although the medical folks won't sign off on you to do this, you can still snorkel the pool. So that's exactly what I did. I had my snorkel and I got to go about six feet deep in a 40 foot deep pool, I would have loved to sit on the floor and have my UC Davis flag. But, you know, I still got to hover above the mockups of the Space Station. And actually, there was two astronauts in there when I dove, I think it was Lincoln and Patrick, from STS 130. And I got to see them practicing for their spacewalk that they would do. And then later on, when I was back at school, I got to see them through the spacewalk in space, and I was going, I got to be in that tank with them. So I got I still got to experience it, luckily. But that was the point where not taking care of myself almost hindered something really cool that I could have done.   Stacey Simms  13:29 Okay, so I have a dumb question for you. They learn to spacewalk or they practice spacewalk in in a pool.   Ernie Prado  13:35 Yeah, so it's interesting, you want to think that you learn how to do space walking in a pool. When you're in orbit, you're in microgravity. And you're basically falling at the same rate as gravity, so you kind of just float. And so what the pools can simulate is the weightlessness. What it doesn't simulate is the resistance to movement. So in space, there is no atmosphere. So you can move very easily with very low friction. In comparison to work in a tank, you know, full of water, you have a lot of friction, when you try to move, it's kind of like when you extend your arm and try to swim in the pool. It's very difficult to do. So you can't simulate that, but the weightlessness portion you can. And they do that by attaching weights or foam on to the spaces that are in the pool, and you become neutrally buoyant, hence the name of the laboratory. So you don't sink in, you don't float just kind of hover there in one space and water. And so you actually can't even swim. If you can translate along the mock up or along the space station mock up with the hand rails on like you would on orbit. But if you need to go from one location to another, and you don't have anything to grab onto divers have to come and move you.   Stacey Simms  14:40 Wow. That's amazing. What made you decide Do you remember when you were younger? You said earlier your mom said you got upset if you couldn't watch Star Trek at age four. Okay, first of all next generation or original Star Trek? Very important question,   Ernie Prado  14:55 I believe, I think next generation but I like them all. Now. And when they come on, I will watch them. So I'm a big fan. Anything space related? And I'm in love with.   Stacey Simms  15:07 It's funny but but what would you remember what got you really excited about it as a kid? Was there anything you can think back on and say that, you know, you just really wanted to go into space? We were fascinated by the planets. I'm always curious what, what sparks a passion in someone?   Ernie Prado  15:23 So I feel like that's the hardest question to ask. And it's typically one of the ones that is asked, because it is an interesting thing. But you know, and you always hear the folk folk say, I just got the space bug, and it's kind of like this thing that just happens. So I do remember loving planets, loading stars, loving spaceships, is kind of everything about that. I'm not sure exactly what did I just think I was fascinated. There's one moment that kind of stands out to me, that was pretty neat. And it was this. eight and a half by 11, kind of photo of the first few shuttle astronauts are john young and Bob Crippen, and they were in their orange pumpkin suits. And I just remember looking at that, you know, at the time, I drew on the back and wrote my name, and like pink highlighter, and going, Wow, these folks are really cool. They get to go into space. And it didn't really dawn on me just how cool their job was, for some reason that picture always stands out in my mind. And then, you know, at 21, about a year after I started working here, I actually got to meet john young and shake his hand. Oh, wow. And, you know, so he was the commander of the first shuttle flight. But he also flew in Gemini, and then Apollo and he walked on the moon. So I shook the hand of a Moonwalker. And then that kind of like, is what threw me back to that memory of that of that picture going, whoa, that's really cool. And, you know, I think my dad probably has something to do with it, because he was in love with the shuttle program. And he told me about, you know, driving loads in his truck over to, I think, Edwards Air Force Base and Palmdale when they were building enterprise, which was tested shuttle for kind of clarity, and never flew into space. But it did the approach and landing test, and he has pictures of it, you know, back before the real shuttle ever flew. And then I remember asking him, did you ever think you'd have a kid that worked for NASA? And he said, No. Probably some of his interest rubbed off on me.   Stacey Simms  17:15 That's great. You mentioned earlier, a couple of things I wanted to go through. You mentioned that you were in a centrifuge. Yeah. Tell me about that. What was that was that for testing. And I mean, that's just that's one of my nightmares, to be honest with you. So tell me all about that.   Ernie Prado  17:30 So that was a really awesome experience that happened about three years ago, the commercial space tourism industry is starting to come up, it's still very young, but they need to do your research on how a more average person will fare in the environment of elevated g loads and weightlessness. And so they need to gather data right now, you know, most of the folks that go up into space are I consider them superhuman, these people can take all kinds of abuse, and they're in peak physical health. But that's not everybody that would be interested in going in space. So as they start to open up this market, folks have back problem and lung issues and diabetes and heart problems. They want to understand how they will react to the forces and weightlessness and the stresses that it puts on their body. So one of my friends sent me a link that was saying that, you know, recruiting folks with these kind of conditions, to see how they will fare and I was like, amen. So I went and applied. And before even getting selected, they said, these are the weekends that you would come Are you available, I went and bought my tickets, before I was even approved. And so I showed up to the doctor for my physical, and he goes, Okay, well, you're good to go. And I said, often he goes, what we can do on goal is, like, already bought tickets, and the doctor just looked at me incredulously and goes, what you didn't know, you'd be if you'd be approved? And I said, Well, I love Southwest, because you can still use those funds towards another flight. He goes, Okay, well, you get to go on that weekend. So I flew out to Pennsylvania, and it was the NASCAR facility. And this is like, a really incredible facility where they train pilots, you know, how to survive these incredible maneuvers that they perform, and jet aircraft and, you know, folks that are hoping to go to space and just training for a variety of things that includes stresses on the body. So they stuck me in this centrifuge. And I had another participant there with me, who was a former F15 pilot, which is just the coolest thing ever. And they subjected us to the flight profile of the XCore link and the Virgin Galactic spaceship two, or one I believe at the time. And so I think I peaked at about seven and a half G's for about 15 seconds or so. But you went through the profiles and got to see how it would be the experience of spaceflight. And so they put you through the asset and the decent, not so much the weightlessness portion, but it's very interesting to see just how much it affects you. My sugar levels were good, but I was so tired because you have to flex your entire body to prevent from blacking out and there's specialized breathing techniques to keep kind of pressure in the lungs and just to maintain how Consciousness. So luckily, I had a very experienced person there with me who taught me, you know, this is how you how you hold your breath, or this is how you flex all your muscles at once. And I did, they seem to think that I did very well. And it was a really cool enjoyable experience, and a video of it and pictures and probably something that I'll never forget, I was just so neat.   Stacey Simms  20:19 Were they very interested in your blood sugar particularly did they measure that throughout?   Ernie Prado  20:24 So I measured it before and after, you know, a few times during the day. I didn't have my CGM at the time, I didn't have it available to me. But I wasn't worrying because the needle kind of hurt a bit. It was one of the older ones, just painful. So I kind of was avoiding it. So I did the finger pricks. And yeah, my sugar levels maintained pretty well, they said, you know, keep a little bit higher than normal. So that way you don't tank and so I think I was staying around like the 170s or so. But it didn't affect me at all. And I think I was playing around going that this was the first instance of an insulin pump going through that kind of G load. And it probably should have told because   Stacey Simms  21:00 that was my next question. Did you do you worry your pump during   Ernie Prado  21:03 this? Yeah. And I didn't capitalize on it.   Stacey Simms  21:07 What kind of pump? Do you Where did you were at the time.   Ernie Prado  21:10 So at the time, I was wearing my Medtronic, and I think it was the 720 paradigm. And it performed pretty well. I mean, I still have the same pump right now it's lying on my counter, because I’ve switched to a Tslim. But it's survived it just fine. And it performed perfectly after that. And apparently during. So that actually would probably would have provided some really cool data to that team. And I just didn't make the connection at the time, unfortunately.   Stacey Simms  21:39 Well, you had other things to think about. And it's interesting that they didn't ask I mean, that's, you know, that's just one of those things where they're, they're studying people with diabetes. You know, I would assume they looked at all of that, but the upshot was that you were just pretty much really worn out.   Ernie Prado  21:51 Yeah, I was, it was, I was surprised how tired it was. Because I think throughout the it was two days, and I think throughout each day, maybe 15 to 30 minutes of that day, we're you know, the elevated g loads. And I went home and or to my hotel, and I just asked all those exhausted because you don't realize it but you're working out every single muscle in your body for that short timeframe. And it actually takes a lot of energy others. And you know, Bobby, the guys that said that you eventually get used to it, you know, once you're fighting jet, and you were a GC to help put pressure on your body, and it helps do some of that work for you. But we didn't have any of that equipment.   Stacey Simms  22:31 You talked very early on in the interview about flying about I think you said flying F18s. Is that something that you would like to be doing? Or is that something that you have done?   Ernie Prado  22:40 I've never gotten to fly an F18. So that's a military jet that the Navy uses, you know, as one of their fleet. And so that's like a dream of mine still at this point. But you know, I mean, even any other military jet would be incredible.   Stacey Simms  22:58 Do you fly? I mean, I dumb question. Are you do you have a pilot's license? Do you fly at all?   Ernie Prado  23:03 I don't. I've gotten some stick time before on several. What are they called? The word is escaping   Stacey Simms  23:12 like a simulator.   Ernie Prado  23:14 And then I've flown simulators I've even flown the shuttle simulator. That was a lot of fun. But, like so in college, or the stick time on a Cessna 152 or 172. So they're single engine, you know, planes basically. And so they're they're not advanced, like, you know, the jets that fly like that. So I've gotten to do that. I am fortunate cam and gotten a pilot's license just because a it's really expensive. It's several $1,000 that I just haven't had to put towards that. But eventually, I'd love to do it. You can get a a pilot's license, private pilot's license, there we go. That's what I was looking for. As a diabetic, you just have to show good control of your blood sugar for about six months prior and maintain that. So you can pass the class to physical. And you can also get I believe in experimental pilot's license, but you can't make money from flying as a diabetic, at least that I know of as a type one, because they're concerned with the liability of. And I believe the terms were subtle incapacitation, and sudden incapacitation. And if you have cargo or humans, you know that you're responsible for the really big risk. And so that's my understanding of why you can't do that. And same reason for the military, because then you'd be putting other folks at risk if you know if something happens to you.   Stacey Simms  24:32 And in what context, though, and I apologize because I wrote down, F18 that I don't remember we were talking about trying to get more good people with diabetes to be able to fly more.   Ernie Prado  24:44 Oh, so definitely F18 is just one of the planes that I really love the beautiful they're so over powerful and they're just, they're sleek, and they're so cool until the Navy flies over them on carriers, you know, and actually have a buddy or two that flying is just kind of jealous. But no. So as far as I know, you probably would not have a type one diabetic find those, especially, you know, they're just not available in the civilian world. And since we can't join the military at the moment, and probably for the foreseeable future, there's, you can probably fly backseat, you know, as a passenger, but not as the pilot. But you know, I do, there's apparently a stunt pilot that does fly, you know, his personal aircraft at AIR shows. And he performs some really amazing stunts. So we can fly is just, it's a limited set of aircraft.   Stacey Simms  25:36 And you want to be a flight controller, you said, what is what is that job is that one of the guys that sits where we see the movies, you know, see the Apollo movies, they're sitting in the, in the back home on the front of the computer? What is that?   Ernie Prado  25:49 Yeah, so that's kind of the image that's conjured up when flight controller is talking to. So we have, so shuttle, and ISS and Apollo and Mercury and Gemini, they've all had flight controllers. And basically, if I controller that helps monitor the systems onboard spacecraft, make sure that everything is going fine for the crew members try to keep them safe, address real time problem. So it's a whole host of responsibilities. And so there's an entire team that does this, and it's going 24 seven, so there's always somebody monitoring the spacecraft, and it's fine. And there's Capcom, which talks to the crew, there's a flight director who's responsible for the mission. One of the disciplines that I can talk about is also which is operations support officer. And that's the group that I was in. They are responsible for mechanisms, maintenance, and things of that nature. There's then there's other groups such as Prop, which is propulsion. And so they all have different responsibilities. And but yeah, so those folks have, you know, responsibility over the crew safety, and, you know, to help them perform science, when they're in space, and just help maintain that aircraft or spacecraft. And one of the terms that they use to describe a flight controller is a steely eyed missile man. And it's a throwback back to the early days of flight when we actually put astronauts on modified ICBMs and shove them up into space. So, yeah, I was trying to do that. I was working halftime in that group and halftime at the space vehicle mock up facility, which is where I still work now. That's where we train astronauts for the inside of the space station, and I had a big project coming up. And at the same time, I was trying to see if I could become flight controller. And I encountered some resistance from the medical side, because they were concerned about, you know, my ability to handle the stresses. And so I did have support from upper management saying that if I had the technical knowledge and know how and competent that they would support me in trying to still become flight controller. But Tom had this really cool project to create the note three mock up, that was, you know, had a large budget, and it was high visibility and a long term schedule. So I kind of gravitated towards that. And it was really cool, because it culminated in me getting to brief the ISS program manager on this mock up, bill for the ability, and I never thought I get the, you know, speak to a person like that. So that was very cool for a person that only been around as a full timer for about two years.   Stacey Simms  28:31 Yeah, and that sounds pretty amazing. This is kind of a silly question. But it's in my head after I mentioned the Apollo 13. In the movies, we watch movies like that, can you walk, can you watch movies like that? I can,   Ernie Prado  28:42 and I enjoy them. And so actually, this is this one's pretty cool. And we saw the co op, you get to do a lot of neat things, visit the historical sites and talk to historical people are influential people. So we actually watched Apollo 13, in the Mission Control Room where Apollo 13 was controlled. Wow, that was one of the coolest things that I've done. And I took a picture of the console that I was sitting at, and that same wall, a replica of that console was in the movie on the screen. And so I was showing both of them on one picture, and I was going, this is cool. One thing that I tend to do is point out the errors about that, and my friends are like just enjoy the movie. But it's it's kind of fun. And it's a little bit of the you know, the nitpick Enos of actually what's going on and that's wrong, this is wrong. But the the movies are good at inspire folks, and they get them interested in space. And be there just enjoyable, you know, it's what got me interested in it in the first place. And without that, you know, you wouldn't interest other folks. So like, for instance, gravity, that movie was just beautifully done with the cinematography. I mean, it's just incredible. And it sucks you in but there was a few technical details or are lovable and that's not quite right. Right. But overall, they're really I love watching them.   Stacey Simms  30:03 That's great. You know, and when we think about the space program, and you've mentioned Gemini and Apollo in the beginning of the space shuttle, and that's when I was a kid, the space shuttle was what was new, and it was so exciting. And it seemed like a few years ago, that Americans might not be that excited about space anymore. You know, the funding was going down, and people weren't talking about it. And then you have things like Scott Kelly's year in space that he just returned from where he was tweeting all these pictures out and getting people interested again, and we have, you know, the the interest in Mars and different projects. Do you feel like it's on an upswing again?   Ernie Prado  30:35 Oh, yeah, definitely. And that's such a heartening thing. So I was lucky and got to work a little bit during the time of shuttle that got the Washington Actually, this is a really cool experience that I just remembered right now, because you were talking about how you were around, you know, during the beginning of shuttle in 1981, which is the first launch. And if you haven't heard the video, or seen the music video, actually, countdown by rush, I highly suggest it for anybody. They attended the first launch of the shuttle Columbia, and they put together this just amazing video that kind of makes my hair stand on that when I watch it, because it's just so cool. And it's like, it's just really powerful. And I got to watch the last shuttle launch, not in person to hear Johnson Space Center and Sony Williams, who's an astronaut was right there, kind of next to me and a few other folks. And you know, she was an astronaut that has flown on the shuttle, and it was just kind of really cool to see her emotions for the final flight of the program, when it was closed out. So that was that was a cool experience. And seeing the the, I guess, resurgence or like the increasing enthusiasm about what we're doing is just so cool. And, you know, we can go out and advertise for ourselves, we really just kind of rely on the science that we put out to benefit, you know, every day portions of our lives. And spin off that influence people. So you know, a lot of folks on being NASA influences them, or their lives. But you know, a lot of the technology that's around it has some that NASA influence. And so you know, movies like The Martian, and the mission that we just did with Scott Kelly are so cool, and so, so essential to keep folks interested in what we're doing. So it really does, it makes you feel proud of the work that you do and makes you want to do it better. Because really everything we do is for the benefit of our country and just afford, you know, knowledge for humanity. And that's, that's our entire mission is to learn about where we are and what's out in the cosmos. And it's really great to see people, you know, start to feel great about that.   Stacey Simms  32:49 And when you talk about the things that come from the space program that are relatable, I mean, you know, it's kind of jokey like oh, Tang, but you know, all the things that we use in everyday life didn't the insulin pump wasn't that developed, I thought I read a while ago, that part of it was developed because of NASA.   Ernie Prado  33:07 So I'm gonna have to check my history on that, because I'm not exactly sure exactly how we have impacted that. But if you look at some of the broader history, not just insulin pumps, integrated circuits were influenced by, you know, NASA engineers and advancements in technology. And, you know, coding and signals and mechanics and all sorts of things. So in a broad way, I'm sure it was benefited Somehow,   Stacey Simms  33:36 I just, we took a tour of the we took a tour a couple years ago of the Kennedy Space Center. And I remember them saying that because we all went What? So I'll look that up. I'll fact check that before we put that Yeah,   Ernie Prado  33:48 I'd be very interested in learning more about that. That would be so cool. And I can't believe I haven't looked into it already. If I taught you something, I'd be so excited that you did   Stacey Simms  33:59 and say, Oh, you know, talk to a rocket scientist. Didn't know something I knew. But let's get back to diabetes. When if we could. How are you doing now? I mean, you mentioned you struggled when you were in college and as a young adult, are you? Do you feel like you have incorporated more into your everyday life? You do? Okay.   Ernie Prado  34:19 Yeah. So I actually, as soon as you asked that, I looked at my pump, and I'm currently at 119. And I've been in my perfect range here for see at least three hours, six hours, 12 hours ago had a little blip above 224 hours, I had a little blip about 250. So I'm doing pretty good. You   Stacey Simms  34:36 were nervous. You were nervous about talking to me. Oh,   Ernie Prado  34:39 not at all. I do manage it a lot better. My A1C is not perfect. It's not eight right now. My goal is to get it down to those 7.5. But you know, using the CGM and you know, actually, you know, checking my my sugar with pricking my finger, you know, four to five times a day. It does help. Sometimes it can be hard to get the point Five times, or five times to check it in one day, but you know, I try to make it a priority as it should be. And really not try to brush it off at all, you know, I'll be fine, because it really does have a huge impact on my life and so levina looking to do is get back to work and out if you went back out about a year ago, and it kind of delayed me in that process. So I've started to start to do that a little bit more. So that's helping, and, you know, trying to eat better, has also helped. And, you know, I, I don't really drink a lot of alcohol, which, you know, also does help keep the numbers controlled, though I'm doing much better than it was in college. Because there was one point where I didn't check my sugar for four months. And when I think about that, now I'm going What in the world was I thinking?   Unknown Speaker  35:51 Yeah, well, you know, I and   Stacey Simms  35:53 I asked that question not, and I appreciate you sharing numbers. And I always feel really nosy when that happens, but but it just sounds to me like somehow you've gotten from that college kid who didn't want to check it. All right. And I appreciate you saying that, too. Because that's reality that happens to somebody who's now really accepted this and and doing your best was what you got?   Ernie Prado  36:14 Yeah. And, you know, I figured it's not going anywhere. Am I still frustrated about it? And sometimes wonder, you know why this happened, of course. But, you know, I'm trying, you look at the positive aspect of it. And so actually, you know, like Sarah Sanders, and I had, luckily had a chance to meet her. And I read her book and talk to her about it. And her view on it was just so positive. And just, you know, a woman make the best of this, that it had a huge impact on me. And you know, I've been more accepting of it. In the past few years, I remember when I first got my pump I was all excited about us showed everybody. So being in control of it also helped me be a lot more accepting of it. You know, when it was my numbers were out of range. I didn't want to think about it. And I didn't want to talk and advocate and teach people but I was just like, kind of burned out. So it's actually kind of like this cyclical thing where the better control you take of it, the more accepting you are, and the more you want to educate and get, hopefully, influence other people that have to do the same. And I'm not sure exactly how that works. It seems to be a strange tie. But yeah, I just, you know, I probably talked too much about it now. I think, folks, okay, or you get it, but yeah, I think it's great. Yeah,   Stacey Simms  37:34 I just jump in and say for now, I should jump in and say Sierra Sandison, if you're not familiar with her is of course, Miss Idaho. She were insulin pump in the Miss America Pageant. I think it was two years ago, starting the show me your pump, social media movement, how did you meet her?   Ernie Prado  37:50 So she came down to the ADA convention in Houston. And, you know, I'd heard about her a few years ago, because of why she did wearing the pump on her, on her on her body when she was getting the pageant, and I was just thinking, that is so cool. You know, she's old enough, or, you know, being proud of, of being diabetic. And I guess I hadn't ever thought of it in that perspective. And I was just like, you know, I really kind of admire that that's so cool that she's, and you know, just a response how parents are like, you know, you help my kid feel like that it's okay to be diabetic. And thinking back to the early days, and I had it and where I was told kind of young, just don't talk about it. It was it was really just a nice feeling. That's good to have that kind of inspiration for other folks. And so I said, Well, I will buy your book, read it. I'm a little hyper sided. I want to talk to her just because she seems really cool. And so I talked to her for probably God, who knows half hour at least. And so we ended up being, you know, friends on Twitter, and all that stuff. And so she's been, you know, a really cool person to know. And, you know, just somebody that I kind of look up to just for being such a role model for diabetics, and raising advocacy for it and all that.   Stacey Simms  39:09 That's fantastic. I love hearing that. And we talked to Sierra last year on the podcast, and she's just, she's just terrific. And she's also you know, she's this it will see in her words, I think she's like a real math and science geek too. She's really cool that way.   Ernie Prado  39:24 Yeah, I think she's actually chosen to pursue engineering, which I was just like, Oh, that's awesome. Yeah. If you ever need any help with with yourself or college, let me know. Because, like, I mean, you know, you got the common thing of diabetes that then you know, whenever I meet an engineer, I'm like, Hey, cool, you know, the pain in college, you've been through it. So I always like to encourage more engineers and get them into the into the STEM fields just you know, cuz we need that talent. And it's really cool to see folks be passionate about the stuff that dorks like, like myself, you know, like math and science, chemistry and all that. So Yo, it's awesome. We need more dorks.   Stacey Simms  40:03 All right, so what's next for you? What's next for you at NASA? What are you doing now? Where would you like to be in a few years?   Ernie Prado  40:11 So that's always kind of a hard question for me to answer.   Stacey Simms  40:15 I feel like it's a job interview. I didn't mean to phrase it like, yeah,   Ernie Prado  40:17 oh, no, it's okay. It's the way I think of it. I'm the type of person that kind of sets a goal. I don't know how in the world, I'm going to get there. But somehow I tried to chart my path. And so it seemed to work out in several instances for me, so I keep taking that approach. Currently, I'm a market manager, project manager at the svms. And so I lead technical projects to build mock ups, improve them, upgrade them to approve engineering activities and training activities, I lead with outside companies, other centers, divisions, and directorates. So it's kind of this big catch, catch all integration job. And I get to meet a lot of cool, interesting people and, you know, still get to use my technical background for projects, but also get to learn about the management side of the house. So you know, dealing with budgets, and, you know, managing a project. So that was something I didn't learn in school, and it's a cool skill to learn.   And, you know, the first few years, it was a trial by fire because I had no idea what I was doing, I was in the technical background. So currently, I've been involved in an agency project about how to apply models, a systems engineering, to the projects that we're doing. And it's an approach that kind of takes a consolidated view of projects, including cost development, schedule, requirements, activities, you name it, everything goes into one single source of truth. So that that's a neat project. And it will be reported to the agency headquarters here, by the end of the year, I really don't know where I see myself at though, I know, I'd like to continue here. And just keep being involved. And, you know, giving my small contribution to, to what I think is man's greatest mankind's greatest endeavor, you know, it's just an honor to be here and contribute to something. So I think scran and you're working amongst these, you know, so many folks that have a passion for what we do, and just they're so bright and talented. And, you know, I consider myself an average person here at you know, because there's so many bright folks out here. So, like I said, it's a hard question, eventually, if I can try to fly some knowledge base on down, and I will try to do that. I can. That's one of my goals. Right now. I don't know how it's gonna be achieved. But you know, I'm gonna work towards it. Yeah.   Stacey Simms  42:37 Let me ask you one more diabetes question. Ah, there are a phrase this, what would you say to somebody, maybe a 15 year old kid, maybe somebody older who's diagnosed with type one and is told, I'm sorry, but the dream you had, is not going to work out? At least not now. You are so positive about things. I'm curious, you know, how do you get past that? And what would you advise somebody else to think about if they're told, I'm sorry, but you just can't,   Ernie Prado  43:04 because of diabetes. So I'd say you know, at first, it's a little bit of a blow. Because some, it's something that's out of your control. So one of my friends who's a pilot said, you know, you'd be a shoo in, in the Air Force to be a pilot, because of your technical background, it sucks that you can't do it, because you're diabetic. And I was just like, I remember going. That's depressing. Um, but, you know, there, I think there are realistically some things that we probably can't do. And realistically, there's others that, you know, we're just told we can't, but we absolutely can. And so I would say, you know, fight an uphill battle, don't give up and try every single Avenue available, to try to do what you want to do. Because more than likely, there will be a way that you can find, and without folks, you know, kind of Blazing those trails. It's not going to happen. And, you know, I know, it's not the same thing. But going back to 1980, there were only male astronauts, and they used to tell women, you know, don't bother applying, you're not going to get selected. And now we have a number of female astronauts. And in fact, you have commanders like Eileen Collins, who was an incredible person to have in our astronaut corps, Peggy Whitson and, you know, Sally Ride and just a number of these very influential people that were told, you know, don't apply it. Why even try and you know, they forged the path. And because of them, now, other people are able to do that same thing with African Americans like Guy blueford and make Jameson. You know, they were astronauts, and in the earlier days, you know, they weren't selected. So I think that without butting your head against the current limitations, don't never, you know, what we can do will never be expanded. So fight the good fight. as cliche as that sounds.   Stacey Simms  44:57 That's a great answer. I love it. So thank you so much for joining me today. I'd love to check in with you periodically and see how you're doing. And it's just, it's such a cool story, and I really appreciate you spending some time with me.   Ernie Prado  45:10 Oh, absolutely. I appreciate you. Thank you for speaking to me. It's kind of cool to talk about some things I've forgotten and every day. Yeah, absolute pleasure. And I appreciate you know, the invitation.   Unknown Speaker  45:27 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  45:33 I will link up more information about where he is today. You can always find out more at Diabetes connections.com. I will of course include information about the super Guppy which is the project he is currently working on. He's the project engineer there. I'm trying to remember the last time I saw him you know, it's it's funny these days trying to remember when you saw anybody because of course, all of 2020 we saw nobody but I saw him at a friend's for life conference, I want to say two years ago, and I'm bringing it up because it's a little embarrassing. The last time I saw Ernie, he was chasing me down because I forgot my phone. I left it with him. And my phone also has my wallet in it. I have one of those cases where it's got my license, you know, my credit cards, all that stuff. And I hadn't even noticed it was gone. And then all of a sudden here he is running up.   Stacey Simms  46:18 Oh my gosh, so embarrassing. But thank you. He's just a Boy Scout, in addition to being a rocket scientist, and I do appreciate you. He's also been really great to Benny. He met Benny This is a different time. But another friends for life conference. It had to be four years ago helped me out people when it was at the Marriott maybe it was five years ago now. I'd have to look that up. But it was it was the year of the Irish dancers. Oh, my goodness. But anyway, we sat down with Ernie and we were just talking and introducing and Benny absolutely adores him and was eating this enormous dessert. I know Ernie remembers this because his eyes are so wide. It's like you're letting them eat this. But then Benny was going swimming. It was night he was doing this nighttime swim with some friends of his and they're having a really good time. And you know, you kind of need to carp up before you jump in the pool. And I was so excited to show him the next day to show Ernie that he was like 100 all night long after eating this enormous dessert. It's funny after during the show for so long, how I've become friendly with so many of you as you listen and as your guests and man that's so rewarding to me. All right. Remember, Tuesday is our regular scheduled episode all this year. Tuesday will be the regular interview episodes with all the segments and info that we do. And on Thursdays I will have these classic episodes where we take a look back didn't expect to reminisce there at the end. But you know, as we look back on the last couple of years, that is bound to happen. So let me know what you think. I always like to hear from you. big thank you to John Bukenas from audio editing solutions. My editor who is great about taking on new projects like this, I appreciate you john.   Stacey Simms  47:43 Thank you so much for listening. I'm Stacey Simms. Until next time, be kind to yourself.   Benny  47:53 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged