Diabetes Connections with Stacey Simms Type 1 Diabetes

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The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent diabetes advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for…

Stacey Simms


    • Dec 7, 2021 LATEST EPISODE
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    The seven-day infusion set is here. What's next from ConvaTec Infusion Care?

    Play Episode Listen Later Dec 7, 2021 43:38

    When we heard about a new seven day infusion set approved this past summer, we had a lot of questions! We've been told since the very first day of pumping to only use the inset for 3 days tops and to always rotate the site. How did they get seven days out of one of these without skin irritation and with good absorption? We asked the folks who make the inset to come on the show and explain. Turns out, ConvaTec Infusion Care makes the insets for Medtronic, Tandem, Ypsomed, Dana RS and Roche pumps. So while I started off talking about the longer-wear version, the conversation you'll hear includes everything from proper insertion technique, their challenges teaching users best practices, improvements they're making to the cannula and more. In this interview you will hear: John M Lindskog, President & COO, Matthias Heschel, Vice President, Research & Development and Intellectual Property Rights and Dr. Kerem Ozer, Director Infusion Care Clinical Development Good article about using insets correctly and understanding the different types. 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, how much have you thought about the way your insulin pump connects to your body? Honestly, it's where a lot can go wrong. The people who make the insets know that they have come a long way. And they're trying to make it better.   Matthias Heschel  0:40 It's what some people call their Achilles heel in the arm therapy were very much aware of it. And our approach simply is instead of doing product design at the drawing board, to the product design in the field, really taking the patient at the core of our design process, really understanding behaviors, understanding what could go wrong, and then design the product accordingly.   Stacey Simms  1:05 That's Dr. Matthias Heschel, head of R&D for ConvaTec infusion care. He, the CEO and the Medical Director sat down with me to talk about longer were tips for users and what's next for this really important part of pumping. 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're always so glad to have you here. We aim to educate and inspire about diabetes with a focus on those who use insulin. I am really excited and happy to talk to the guys from ConvaTec. This week, you know, they were frank, they were really up for anything. And I have said for years that insets are the weak link in pumping. And they really opened my eyes to some of the issues and what we can do as users or you know, as parents of users to make things a little bit better. And of course, they're working on improvements as well. But before we jump in a little bit of housekeeping, I want to talk about the rest of the year schedule for the podcast, I can't believe we're in well into December at this point. Right now the plan is to keep going with these longer format. The interview shows that air on Tuesdays, and we'll have that there shouldn't really be any interruption or any week skipped through the rest of the year and into January. I'll let you know if that changes. But that is the plan right now. As for the newscast, I will probably not have a newscast on the 22nd of December. Again, I reserve the right to jump in and make a liar out of myself. There is breaking news sometimes late December is when the FDA makes a lot of decisions. So we could have some breaking news. But I would say right now, it looks like at least that one date will not have the live newscast on Wednesday on Facebook, Instagram and YouTube. And so then I will not be turning it into one because that would be a podcast on Christmas Eve and I don't think there's a lot of demand for you to listen on Christmas Eve but you tell me if there is I'm happy to serve and try to put all that together. Another quick announcement and I'm actually going to talk more about this after the interview is that book number two is in the works. The second World's Worst diabetes mom, I signed on the dotted line to deliver that next year. So we have a timetable. We have a theme. I have lots of stuff. I'll tell you about that again after the interview, but man, I'm really excited about it. Alright, a little bit more about our guests. ConvaTec infusion care makes insets for both of the tubed pumps available in the US they make for Tandem they make for Medtronic, they don't make Omni pods. They also make insets for Ypsomed and other tubed pumps abroad. But if you use a tubed pump in the US you use their products. In this interview you will hear John Lindskog The President and CEO, Dr. Matthias Heschel, the head of R&D, research and development and Dr. Kerem Ozer, the Medical Director, I worry a bit about three voices. I mean, really, it's for with mine, but we do I think we do make it clear. And there is always a transcript over at diabetes connections.com at the episode homepage, if you find it easier to you know some people follow along, reading as they listen. Some people prefer to read my transcription software. Let me tell you got a workout on this one. It doesn't speak diabetes very well to begin with. And as you can imagine, there was a lot of technical stuff but we did it we got it and it's there for you. But I think that these three were very frank and gave us a lot of information a national here. They have a question for us. That's coming right up but first Diabetes Connections is brought to you by Dario health. Bottom line you need a plan of action with diabetes. And 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. Their 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. John, Matthias and Kerem, thank you so much for joining me. We have a lot to talk about. And I feel like I've ever been to the company at my disposal. Thank you so much for taking the time to do this.   John Lindskog  5:20 Thank you, Stacey. This is John and thanks for having this opportunity to talk with you. Maybe just a couple of words of ConvaTec infusion care. I'm the president and CEO of that part of ConvaTec. We are based out of Denmark and out of Mexico, we have one plant making a few sets in Denmark, and we have two plants almost side to side in Mexico, and also is fully dedicated to making few sets for subcutaneous infusion. Today with me, I have the Matthias and I Kerem and if you could just kind of introduce yourself briefly.   Matthias Heschel  5:58 Yeah, this is Matthias. I'm heading research and development at ConvaTec Infusion Care. I've been with the company for 10 years. Just happy to be here.   Dr. Kerem Ozer  6:07 Hi, everyone. I'm Kerem Moser and I'm the medical director for ConvaTec infusion care. I'm an endocrinologist by background. I've been with ConvaTec for about four months now. And prior to that I was in practice seeing endocrinology and diabetes patients for about 15 years, and very excited to be here.   Stacey Simms  6:28 Wonderful. Well, thank you all so much for joining me. We have a lot of questions, questions for my listeners questions that I have as a mom of a kid who has used insets since he was two years old. So let me jump in and ask about the newest infusion set as I see it, which is with Medtronic and Matthias. Let me ask you about this if I could. we're hearing really interesting things seven day up to seven day wear, which I believe rolled out in Europe first is now approved in the United States. How I don't want to ask you to give any trade secrets away. But how do you get it to last so long when we've been told for years that two to three days is the maximum for an infusion set?   Matthias Heschel  7:03 Yeah, actually, the answer is very simple. Stacey. Medtronic, they provided quite some details about the year back at the virtual conference. So Medtronic, they added a proprietary connector, which connects the tubing to the pump reservoir. And this connector stabilizes the instrument. On top of the canula, a new tubing, which contains the preservatives, contains the antimicrobial effect of the preservatives. And the last thing is that we added a new adhesive to keep the infusion set on the body for up to seven days. So basically three things. New connector, new tubing, containing preservatives and a new adhesive.   Stacey Simms  7:48 So it was kind of a partnership with Medtronic. It's not all on the inset itself.   Matthias Heschel  7:52 It's a partnership with Medtronic, and they in general, talking about new product development, future products. It's all at system level. So we cannot just develop a new infusion set. We need to take the reservoir into account we need to take algorithms into account so it's it's always a close partnership with pump manufacturers.   Stacey Simms  8:15 how have people received it? Or is it working well, is the adhesive doing okay, on people's skin?   Matthias Heschel  8:20 It seems so we have received some first indication Medtronic percent that results at the diabetes technology meeting here this week, actually. And that has shown that there are lower occurrence of hyperglycemic events. There are fewer occlusions. And I think the average wear time was seven days. So it seems that the patients that have come on to an extended wear infusion set are really happy and the infusion sets perform as designed.   Stacey Simms  8:57 Before I move on from this one more question for you Mateus if I could. I'm curious, are you working with other pump companies on longer where infusion sets? Or is this going to be a Medtronic exclusive for the foreseeable future?   Matthias Heschel  9:10 Well, extending the wear time of infusion sets, that's the unmet need, number one among all patients, so and that's in general interest from all pump manufacturers to have extended wear products in the portfolio. So yes, we're working on the portfolio of infusion sets.   Stacey Simms  9:30 Kerem, let me move over to you if I could for this question. As a parent of a child with type one. We were schooled early on the importance of rotating sites, right? You can't let an infusion set go in the same part of the body over and over again. But most kids and frankly most adults I've talked to who use these products do kind of have a favorite spot. The body. Can you talk a little bit about Yes, I guess there the importance of rotating, but something like a seven day wear or what's coming in the future. Is there a possibility that it could be a little less important? to move that around, or am I dreaming?   Dr. Kerem Ozer  10:02 That's a really good question, Stacey sort of looking forward, just taking a quick step back, just like you said, the importance of sort of proper rotation is something we always talk about in clinic yet in real life, we know that people have their favorite sites. And part of the idea of the rotation, of course, is to reduce scarring and is to reduce lipohypertrophy. I know your listeners will be very familiar with this. But of course, when we say lipohypertrophy, we're talking about sort of the hardening that bumpiness of the layer right under the skin, that subcutaneous area. And when I think about lipohypertrophy, there are several factors that increase that risk, you know, multiple daily injections, pumps, continuous glucose monitors, sometimes the type of insulin being used, and that really changes from person to person reusing pen, needles, all those factors, even higher insulin doses tend to cause more of a higher risk, higher diabetes, duration is a higher risk. Now, when I think about those factors, some of them are you can't change those like diabetes, duration. Some of those factors, you can change by rotating things, when you look at something like extended wear, I think one advantage is you are going to need to change it out less often. So you're technically changing it, you know, less often, it's probably best practice to still change the site and rotate the site. But one thing I think that's going to be even clearer, and I see this all the time, you know, when I talk with my patients, is, I think it's going to be important to realize subtle changes in the characteristics of that site, even before you start feeling hardening of the skin, even before one starts feeling that bumpiness if you notice that a site is starting to not respond as well, you know, you're feeling that you're needing more insulin, you're feeling that the dynamics are changing. That's I think, when it's going to be really key to make that site change.   Stacey Simms  12:21 Interesting. I have kind of said, it's a little bit flippant, but I've said since we started pumping, 14 and a half years ago that gosh, these insets are the weak link in pumping. And what I mean by that is they can fall off easier, they can get occluded, they only last a couple of days. John, maybe let me ask you, can you talk us through a little bit about how you're really trying to make these better? Because I feel like I can have the greatest algorithm in the world on my pump and if the darn thing is flapping on my kids off my kids stomach it's not gonna work   right back to our conversation. Yeah, he does answer that question. But first Diabetes Connections is brought to you by Gvoke Hypopen. You know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you are going to 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: Gvoke HypoPen. It's the first autoinjector to treat very low blood sugar. Gvoke HypoPen is premixed 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 and I'm grateful we have it on hand! 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. Now back to John Lindskog answering my question about making the insets more foolproof.   John Lindskog  14:00 No, no, no, I totally understand what you're saying I will say and then maybe Matthias can chime in after this that, you know the products like insets, they go through a quite extensive and long development program before they actually come to the market and the products also available on basis on customer feedback. And since this is a medical device, it's very highly regulated in the US through the FDA requirements and Europe through CE and in many, many other countries through local legislation. So the level of rigor and preciseness that you have to do in this work is quite extensive for us to develop a product and mass make it into volumes, which we're talking about millions of units per year does require quite a bit of development work to go there. And there is a little bit of you know there's a lot of factors that play into to the to the development, particularly manufacturing of the infuser set, the quality has, of course, to be the highest possible within the requirements. And there's also, of course, a economical part of it, where you need the competitive cost in order to have these products on the market. So I mean, the process that you see today is actually a combination of all the the user input, and of course, also about, you know, the requirements from regulatory authorities. And, and you know, what can be made in very high scale, we, you know, and strive to improve the products along the way, however, even what may seem as being very small, and my new changes, does actually require a complete change process, which is very well documented, and in that sense, also kind of lengthy process. And I don't know Matthias. If you have any anything to add to that, yeah, quick   Matthias Heschel  15:56 Yeah, but I would like to add is that we have, we have about 1 million pump users worldwide. And as a create variability, it's both the interpatient variability and intra patient variability. So huge differences between patients and also huge differences between the use conditions during a day for the same patient. So what we are going after in our product design is really making as robust designs as as reasonably possible. And best example is, is the newest infusion set on the market, which is the base of the extended wear we talked about earlier, an infusion set we call Mio advance which virtually only has one user step. So you hit the bottom activation button and it produces the soft cannula, retracts the needle and detaches the serter all instantly. I mean, all the steps happening in a fraction of a second. And that means you're basically take the patient out of the equation, the patient cannot do any mistakes during the insertion process. And there we see a huge reduction in in failures on the market. So to your question, Stacey, I mean, we understand that the infusion set is the weakest link, it's what some people call the Achilles heel. In pump therapy, we are very much aware of it. And our approach simply is, instead of doing product design at the drawing board, to the product design, in the field, really taking the patient in the core of our design process, really understanding behaviors, understanding what could go wrong, and then design the product accordingly. And we have seen the first successes and they hope to see further successes.   Stacey Simms  17:40 You know, that's a great point about the very simple insertion of the Medtronic inset. Are there any plans to simplify more brands, because I'm thinking of the one we use for Tandem? And you know, by the time you open it, you peel off the sticky stuff, you, you cock it, you get it ready? You know, sometimes you're already set for error, because if the paper writes up the needle, you know, there's all sorts of different things that can happen if people either press too hard or do it at a weird angle. I know you know this, I don't have to spell it out for you. But are there plans to simplify other insets in the way that you just described? Since you've seen how successful it is?   Matthias Heschel  18:16 yeah, plans to incremental improvements on existing infusion sets, based on the learnings we have from the field, among others, what we touched upon removing the paper liner from the adhesive, we can certainly redesign this to make it easier for the patient. And that's, that's definitely on our agenda.   Stacey Simms  18:37 I have a bunch of questions that I got from my listeners, they were really interested that we were talking so let me go ahead and grab those. The first one here was really interesting to me. This listener wants to know about the faster acting Fiasp insulin, which seems to have a little bit of difficulty in some pumps, I was wondering if you were looking into that for different faster acting insulins that the manufacturers are coming out with and if you're testing those and working on ways to improve that in the insets   Matthias Heschel  19:06 Yeah, maybe keep a close eye on the market. And every time a new insulin is approved for pumps, therapy, we add this onto our list and do all the necessary trucks stability testing, device stability testing, so you can put this onto our indication for the infusion sets and then it's up to the to the pump manufacturer to also indicate the pump for the new insulin and then the patient can use it. So and that also applies to Fiasp. So we have done all the necessary homework and we know that at least a couple of the pump manufacturers are considering to broaden their pump indication to also include the Fiasp   Dr. Kerem Ozer  19:47 And to that I may also add that we're also going to be looking at Lyumjev ultra rapid lispro insulin from Lilly, which as you know is also approved just recently for pump use. So That will also go through the same processes that Matthias mentioned, whether it's working on biocompatibility, looking at what the system does to the insulin, and its excipients and what the insulin is excipients do to the pump. And so that's in the works as well.   Stacey Simms  20:15 I meant to ask earlier, I had heard about something I don't know if this is the in-house name or something that you're using and research called Lantern technology. Could you explain what that is what you all are working on?   Matthias Heschel  20:27 I was hoping you would ask this question. Lantern is a pretty simple feature tries to mitigate the occlusions we sometimes see for soft cannula infusion sets, when the soft cannula is bent or kinked. And the Lantern features are actually pretty simple. So we provide the soft cannula with additional slits close to the tip of the cannula, and in case the soft cannula experiences any physical impact is spent or even kinked then those slits would open up and would allow to the inset to continue to flow. So it's basically a measure to mitigate the risk that a cannula on the infusion set can get occluded in the cannula.   Stacey Simms  21:15 That sounds really interesting. It sounds like didn't BD medical a few years ago have something that sounded it sounded at least to my ear similar that it had the different slits in the cannula? And it never came out? Is this similar technology.   Matthias Heschel  21:29 It's you could see it as it's different as a similar technology. It's though, quite quite different. I mean, they provided an additional exit hole, just one hole close to the tip of the cannula. And that actually weakened the cannula significantly, and the product was out on the market. They call it a smart flow technology. And the product was marketed by Medtronic as a process that was withdrawn from the market right after. And with our long term technology, putting a number of slits, we have really avoiding this issue that the cannula really occludes. Imagine if you just have one side hole and the cannula kinks or bends, and you would close up this hole. And in our case, having four or six slits, that would be always a couple of slits open and allow the Insulet to flow. So it's a different technology.   Stacey Simms  22:25 Yeah sure. And I don't know how much you can share which brands might get that? In other words, are you working with Medtronic on this? Or you're working with Tandem on this as somebody else? You know, in the should we be watching for this in a more proprietary form? Or will it just going to go in all of your insets?   Matthias Heschel  22:40 Right now we're in the process of implementing technology in our mainstream products, which are the inset two products, which are available to all pump manufacturers, and then we need to see pump manufacturers will pick up on this.   Stacey Simms  22:56 Got it. Kerem, let me ask you if I could, do you have any best practices for your patients when it comes to using the insets and infusion sets? Are there mistakes that are very common that people make, I'd love to kind of hear, you know, what you what you tell your own or in the past what you've told your own patients?   Dr. Kerem Ozer  23:13 Absolutely. The key things, especially if someone is very new to living with diabetes, as you know, there's there's a lot of anxiety there. Everything is new, a lot of new information is coming in, you know, at our clinic, what I always tried to do, what we always tried to do was sort of taking a deep breath, letting people know that there's a lot of resources, there's a lot of support, you know, at the risk of sort of repeating the cliche, it's not a sprint, it's a marathon, and really providing the resources, sort of focusing that more on to the infusion set side, I think one key thing is starting, especially if someone's new to pump therapy, sitting down with them going over the whole process, we had demo kits, sometimes I would demonstrate sets on myself even just to make sure that everyone's feeling comfortable, especially for our younger patients, having the parents there and really taking the time to walk them through the process of what an ideal insertion looks like. And I think doing it in real life really helps in person in real time. As opposed to watching a video which where everything looks so perfect, right? So we definitely emphasize that prioritize that. And then when we start thinking about using the sets, a lot of those things using the alcohol pad and cleaning the area, a lot of things that are repeated, easy to say hard to do every single time. But I think emphasizing the fact that the closer and closer we get to that ideal that the longer we can keep the site's healthy, the longer we can keep the process healthy is important. And as more technology comes in as continuous glucose monitoring gets integrated. As the pumps get smarter, I think there's always the importance of that of that person factor. And making sure that we're really addressing everyone as an individual and sort of seeing where they are and going and holding their hand and walking with them to where they need to be or where they want to be, is key. And then there is as you know, a lot of variation from person to person. And there's a lot of variation from day to day. And being aware of that repeating that message. And sometimes you wake up and you have a perfect day. And sometimes you wake up and there's a lot of obstacles and changes and bringing that message that, yes, diabetes is there. Yes, it brings challenges. But if we see it as part of a larger system, and if we address it as well as we can, as if we can stick with those guidelines, and recommendations. And if we keep open lines of communication between the patient and the family and the clinic, things tend to fall into place. And I'm very proud to say your many, many patients, of course, live decades and decades of healthy lives with diabetes. And I think that the key component there is keeping those lines of communication open and keeping that sort of positive attitude going.   Stacey Simms  26:38 Alright, let's get back to some of the questions that my listeners had. And I thought this was a really interesting one, she asked me when insets are designed is any consideration given to those of us who deal with limited hand strength, or older adults with smaller hands, or even using color tubing to increase the visibility of air bubbles or maybe using color in the cannula. So it'd be easier to see if it was correctly inserted. I've got to believe that you look at this and you do research it but Matthias, can I ask you to just hop in an answer that one?   Matthias Heschel  27:07 Sure. Well, every time when we design a new product, we put a lot of effort into the initial conceptual work. And that means that you propose certain designs, which we then show to the target population. And if the target indication of the product is smaller children or elderly people, those will be included in the assessment of the concept. So we really trying to already in the concept phase to design the product in the way that we can make sure that it can be used by the by the target population. And at the same time, we are compliant with standards. For example, when we have a product that requires activation to push a button, what's the strength of a point of finger for a for a small girl? so we were really trying to incorporate this in our product design.   Stacey Simms  28:05 Another question came in there used to be an infusion set by a different company called an Orbit. I don't recall this, but this sounds great. It rotated so the tubing was less likely to get caught. Any plans to bring that back or something similar.   Matthias Heschel  28:18 Well Orbit is owned by another company Ypsomed in Switzerland, and to our knowledge, the product is still on the market. So we don't have any insights in the in the details. But it's not it's not one of our products.   Stacey Simms  28:35 Got it? It's probably something that's not available in the US yet because we don't have Ypsomed here yet. But it's it's supposed to be coming. Okay, I have a very might be a silly question, but I will ask it anyway, this is a silly question. I get it from listeners all the time. One of the first times I remember getting our box of inserters we had the old one I always describe it looks like a little spaceship. I mean, I know you know exactly what I'm talking about for it was the Animas way back when and now we use Tandem, it came with these little plastic pieces, and no one ever told me what they were for. And as it turns out, then we realize this after my son's inset got filled with sand at the beach, and we could not reconnect. It turns out these little pieces are supposed to go in and protect the site and keep sand out. But I've heard a lot of different versions of what they are really supposed to do and when you are supposed to wear them. So my question is, when you put an inset on the body, it was explained to me like it's almost as though you've got like a vial of insulin with a little rubber on top. You can pierce it, but you can't get into it. In other words, you don't have to cover it every single time you take a shower or go in a pool because nothing is seeping through until you reconnect the needle. Is that the proper use of those inserters   John Lindskog  29:50 Yeah, this is uh, John maybe just a quick comment. So that that is that is true that at the at the time development there were some spare caps. And the idea here was that when you disconnect the tubing from the side, it's true that you know it sealed, the side doesn't seal because there are septums that closes the fluid pathway. However, the idea about providing these small inserts was that you could protect kind of the surface of the septum. With that kind of cover so that you wouldn't have any kind of larger particles being able to, to come in the way like the listener just described getting sand in it. So it was actually, you know, kind of a protection. However, it was not something which was necessary, it was kind of, you know, choice you could make to add that in, though. So that the reason behind that   Stacey Simms  30:48 perfect, there just seems to be a little bit of a misunderstanding in some parts of the community, what people think it keeps bacteria from getting, in other words, if you swim in a lake or something like that, you should pop it in. But it really is just to keep out particles like sand.   John Lindskog  31:01 Yeah, it's only for larger particles. And, you know, the site is perfectly sealed as it is. So it's it's more to kind of say, Okay, I want to make sure that that, you know, I don't have to clean it up afterwards, and so on. So that was the rationale behind that.   Stacey Simms  31:18 I have one or two more questions, kind of to wrap it up. Have I missed anything in particular that you guys wanted to make sure to bring up before I start wrapping up?   John Lindskog  31:26 Actually, there was just one question that I think that at least I had, I would be curious to know about, you know, in each box of the insets, there is an instructions for use, how you deploy, the infusion set.  What's out and, you know, that is in some countries made in a number of different languages and so on. And I guess I'm just curious about is that being read all the time, or is that you know, being kept in the place or simply just, you know, put it into the trash can. But what's kind of, because I have a I have an assumption. We have an assumption, what happens to these but but I was just curious to know, if you could share that with us.   Stacey Simms  32:07 I'm so excited that you asked that question, John, I think you know the answer, I can't imagine anyone is really reading the instructions, we all should. In fact, I'm going to take those instructions out and look through them. But it's one of those situations where my book that comes with each box is so thick and intimidating. As I'm telling you this, I'm thinking this is why I don't do it, maybe it's just I'll have to take a look at how long the actual instructions are. Maybe it's in several languages. And that's why it's so thick, but we're so used to and maybe we can blame the iPhone for this. We're so used to opening something up and being able to use it immediately and hoping right that it's very intuitive, that maybe that's why we don't read the instructions. So there's a lot of user error. And frankly, I know there's a lot of user error within sets. I've seen it in my house, I've been the user making the error. So I'll ask my listeners, I mean, I'd be happy to take a quick poll in the Diabetes Connections Facebook group, but I do recall taking a pump class, and we were there for two hours, I came home a couple of days later, I had to change the inset on my two year old I had forgotten everything I had learned. And at the time, this was 2007. I found one video, I mean, think about the days of YouTube back in 2007. And it was in French to show me how to change the inset. But I did that rather than look for the instructions. So John, what a great question. And I will get you more feedback from the community on that.   John Lindskog  33:29 Okay, thanks. Thanks a lot. Thanks. I will say though, that, you know, it is a regulatory requirement that we put those in a box. And we would, you know, like to move it into some kind of, you know, YouTube media or something like that. However, the regulatory requirements are that they should always be there. So we want to see if we can move that in the regulatory requirements. So we can, you know, save some printed matter, and, you know, reduce the waste and make it easier to access.   Stacey Simms  34:02 It's a great point. That is a great point. Before I let you go, here in the United States and I assume in many parts of the world, there's a lot of concerns about supply right now. Any issues, any concerns anything people should be thinking about for the next couple of months?   John Lindskog  34:16 No, I you know, and we have had some issues on supplies in the beginning of the when COVID-19 was at the highest and we have been putting in extra capacity for making progress and investing large sums of money into getting you know, capacity brought up and we should be out of those weeds by the end of this year. And we don't really see any, any issues going forward. But you know, it may take some time to get that all through the supply chain, but I can assure you that we're doing everything which is now a power to always have the capacity to supply the what the demand is.   Stacey Simms  34:57 Let me as we wrap this up, Kerem, let me ask you this. You are new to the company, or you are the newest person here, so the company, what excites you and you know, you've worked with patients for a long time, you've seen how important this part of the device and system is, what excites you about this technology going forward?   Dr. Kerem Ozer  35:15 This is a great question. And this is the reason I'm, I'm here, I'm in the company, I think it really goes back to that point about realizing how important looking at patients insights, their experiences, where they are, what they need, and bring that feedback into the company to help develop new technologies. And I would say, a direct corollary to why I'm so excited about my role here is this is really sort of being a medical person, a physician, and endocrinologist and industry, you really play a bridge role. You're constantly talking with the engineers with the business side, and you're keeping your ear open to your patients, your community and your colleagues. And sort of you're part of that feedback loop, bringing back ideas, presenting your products and saying this will work. This is a great idea, and sort of keeping that momentum going. And I'm very excited about that.   Stacey Simms  36:20 Excellent Matthias you are in r&d, you are the head of r&d, you're in the I wouldn't say the trenches so much. But you're really seeing realistically what's happening on the company every day. Anything you want to add to that. I mean, is there anything that you're really excited about that you'd like to listeners to leave listeners with? Yeah,   Matthias Heschel  36:37 I mean, what, what I always tell the engineers is, you guys, you are directly responsible for how patients or people in the state beat is, how they feel how they are able to manage their daily life. If we do a great job, those people can lean back once in a while and perhaps even forget about the disease, if it will not do a perfect job. They have a terrible day. So that's, that's really what people understand. And that's why at least how I see it. I mean, those people in the medical device industry typically work longer work harder, because they understand they understand the responsibility they have.   Stacey Simms  37:17 Well, thank you so much all of you for spending so much time with me for answering our questions for posing your own questions, which doesn't happen that often. And I'm really glad that you did that. We will get you some answers. Thanks so much, gentlemen.   You're listening to Diabetes Connections with Stacey Simms. Lots more information at diabetes connections.com at the episode homepage, and I'll link to some of the studies they talked about that longer were the stuff that's in the works. And let me tell you, I went and got the book. I have it right here. Can you hear that? I'm wiggling it, I went and got the book that comes with the insets. And it's right there. Of course, at the top with the little horseshoe thingies that they explained. I hope they cleared up some stuff for you. The book is long, because as I said, it's in many other languages other than English, the directions are maybe two or three pages long. I think it's really just two pages. There's some pictures here. But the English instructions are one to three pages long. And then that's it. So Benny and I actually sat down and read them. And he does it slightly differently. But what he does works, I mean, we are 15 years into diabetes. So that means we were 14 and a half years into pumping. So he's got it down. But if you're having trouble, I may start a thread in the Facebook group. Because there's some really easy tips and techniques to make sure that you you put these insets on correctly in follow the directions. That's your best bet. But as you know, the community can help too. So we'll we'll put that in there. And of course, I'm going to put a poll up about the and we put I may have already done that by the time the episode airs, because a pull up about have you ever read the directions? I was a little embarrassed. You heard me laughing when he asked, but I'm glad he did. Alright, I've got some news coming up about next year. Oh my gosh. But first Diabetes Connections is brought to you by Dexcom. And when we first started with Dexcom, it was back in 2013. It was about this time here, the share and follow apps were not an option. They just hadn't come out with the technology yet. So trust me when I say using share and follow make a big difference. I think it's important though to talk to the person you're following or sharing with and get comfortable with how you want everyone to use the system. Even if you're following your young child. These are great conversations to have, you know what numbers will make you text, write how long you're going to 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 issues using the data from the whole day 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. A couple of weeks ago I told you I would have some book news and I do I am so excited to announce that the world's worst diabetes mom, part two is going to be out next year, I just signed on with my publisher. We talked this week, actually this morning, as I'm taping this episode, and we laid it all out, because my goodness, with some of the publishing issues, probably hopefully not the shipping issues by next year. But a lot of what's going out of the publishing industry, I have to have everything done earlier than I did last time to have the book Ready by a certain time of year I wanted out for as you can imagine, I wanted for November of next year, because Diabetes Awareness Month is my best bet to get any kind of, I guess, mainstream media attention on diabetes, media attention. And that worked really well. In 2019. When I put out the first book, the name of the book is not part two. I'm not sure what we're going to call it yet. But I will be sharing that with you all, I'm going to be sharing more of the process this time around, just as I think it'll be fun. And I'm going to be sharing things like cover options and title options in the Facebook group Diabetes Connections, the group. So if you'd like to help me the community was a huge help last time around in terms of how to word things. Because you know, when you're a parent of a child with type one, there are some differences that you want to be respectful about. There's some differences and ways of wording things that that just for clarity, right? A good example is are you a T one D parent, to me, that means a parent who lives with type one, right? So you have to It's little things like that you just have to be careful about and you will help me so much with that the first time around. So I will be asking the second time around, I have an idea for a title, I kind of know what the direction is going to be. I know what the title is going to be. I know what the focus is going to be on. We're going to be addressing a lot of the things that I have been asked about since the first one came out. So really excited, a little bit nervous. But man, I loved writing the first one. So I hope this will be as much fun to put together. All right, thank you so much to my editor John Buchenas from Audio Editing Solutions. We will be back on Wednesday. We are now live on Facebook and YouTube at 430. Eastern time. And then around 445 I'm live on Instagram. A little bit different for those of you who live on Instagram a lot like evolve. I mean, what a pain. Right? But it's fun. I like doing it. It's only a pain because I share photos. And I'm not that adept. Really. I mean, Instagram is not a friendly platform for sharing photos live and reading a script. Let me just tell you say if you've got advice on that, and you know how to do it, well, let me know. Or you could just listen to the audio podcast that comes out every Friday for in the news. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon Until then be kind to yourself.   Benny  42:35 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

    In the News.. oral insulin tested for T1D, FDA looks at new tubeless pump, Bigfoot Clinic Hub & more!

    Play Episode Listen Later Dec 3, 2021 6:16

    It's "In the News..." the only diabetes newscast. Top stories this week include: #T1D oral insulin study moves ahead, FDA gives breakthrough designation to new SIGI tubeless pump, study shines light on PBM profits, China demands huge drop in insulin prices and Bigfoot Biomedical launches their Clinic Hub -- Join us LIVE every Wednesday at 4:30pm EST 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   Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I'm going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast.. XX In the News is brought to you by The World's Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com. You can also get a big discount right now at diabetes-connections.com – use promo code celebrate to save $4 XX Our top story this week.. More good news for mice.. and maybe some day for people. Yale researchers are looking at an oral medication for type 1 diabetes. These lucky mice had metabolic function restored and inflammation reversed. There are a lot of studies going on to make oral insulin work – liquid insulin is destroyed in the stomach before it hits the bloodstream. This research involves a nanoparticle drug vehicle that can not only bring insulin to the pancreas safely, but the casing itself has therapeutic benefits. It's made out of an acid that seems to reduce the rogue immune cells that destroy the beta cells in the first place. The team says that the nanoparticles could also be used to carry other molecules, which could help with other conditions. https://newatlas.com/medical/oral-insulin-pill-prevents-type-1-diabetes/ XX A new tubeless pump is making its way through the US regulatory process. The FDA gives breakthrough device designation to AMF Medical's Sigi (SIG-ee) Insulin Management System. This is a patch pump, like Omnipod, but it's rechargeable and re-usable – you get two so you don't have to go without while it's charging. It's also an ACE pump, that's alternate control enabled which means it can interact with CGMs and controller devices like smartphones. This designation isn't FDA approval, but it should speed up the review. In the press release the company says, “Clinical study data has shown that Sigi™ is delightfully easy to use.” Which is kind of a nice thing to see in a write up like this. https://sigipump.com/amf-medical-receives-fda-breakthrough-device-designation-nbspfor-its-sigi-insulin-management-system/ XX Big news from the UK this week – they announced everyone in England with type 1 will be eligible for CGMs covered by the National Health Service there. This was preceeded by coverage for the Libre flash glucose monitor. That program was supposed to start at 20% but almost 50% of people with type 1 have opted in and the results in terms of better health and lower a1cs have really been outstanding. Next up, leaders there say they want CGM covered for anyone using insulin, regardless of diabetes type. https://pharmaceutical-journal.com/article/news/nice-proposes-wider-use-of-glucose-monitoring-devices-for-type-1-diabetes XX New research into insulin pricing is shining a light on the middle men.. many of us have known about PBMs for a long time. Researchers at USC found that drugmakers' share of revenue from insulin sales has dropped in recent years — and a greater share is being siphoned off by pharmacy benefit managers, drugstores, wholesalers and insurers. In 2014, 30% of insulin revenue went to PBMs. By 2018, those same middlemen were receiving 53%. Terrific write up as usual by David Lazurs in the LA Times – he lives with type 1 and I always love his stuff. I'll link this one up. The researchers here say since the PBMs are getting a greater share, there's pressure on the drug's manufacturers to keep raising prices so their own profits don't suffer. It's worth noting that these findings were possible because of newer state laws bringing greater transparency to insulin sales. https://www.latimes.com/business/story/2021-11-30/lazarus-healthcare-insulin-prices XX What works to bring down the price of insulin? Ask China. They decided a round of price cuts is due and as a result, 42 insulin products from companies in China and abroad took an average 48% price drop. Otherwise, they wouldn't have been used in that country's public hospitals. Lilly gave up the largest discount: After a 75% reduction, the price of Humalog went down to about $3 per pen. China has been making pharma cut prices for the last few years for other medications. This is the first time insulin has really been affected. https://www.fiercepharma.com/pharma-asia/novo-nordisk-sanofi-eli-lilly-cut-insulin-price-china-s-latest-vbp-off-patent-drugs XX Bigfoot releases some information and reaction to their Clinic Hub. This is how endos and clinics use the data from the Bigfoot Unity System to support patients. Unity launched this summer – it's their smart pen program. When you think about multiple daily injections whether it's for type 1 or type 2.. it's hard for health care providers to see what's going on day to day.. are doses correct, when they're giving, etc. Unity can also include CGM data. This is the launch phase of Clinic Hub.. Bigfoot says they've also added streamlined patient onboarding and more flexibility for patient updates and prescription management. https://www.drugdeliverybusiness.com/bigfoot-biomedical-touts-cloud-based-program-for-managing-diabetes/ XX I'm including the Vertex news here.. we reported this back in October but you probably had everyone you know send you that New York Times article about a cure for type 1 – at least in one guy.. I won't rehash everything here..  it's about stem cells, one patient off insulin but on immunosuppressive drugs..  Personally, I'm very hopeful, but the Times write up overly simplified a lot of this, in my opinion. Good write up in Healthline that I'll link to. https://www.healthline.com/diabetesmine/vertex-type-1-diabetes-research XX In the UK lots of attention on their Strictly Come Dancing competition… when it became apparent contestant Nikita Kuzmin wasn't hiding the Libra glucose monitor on his arm. He wasn't hiding much.. he took off his shirt for this performance. Loads of social media comments applauding him.. for both. By the way, his dance partner, Tilly Ramsey is the daughter of professional chef Gordon Ramsey.. and they were eliminated from the show this round. https://www.express.co.uk/life-style/health/1528577/strictly-come-dancing-nikita-kuzmin-health-diabetes-type-1-symptoms -- quick reminder that the podcast this week is with the UK co-lead on diabetes, Dr Partha Kar. We had a great chat about access and their Libre program and his whole philosophy.. really fun episode. Next week you'll hear from the folks at ConvaTec, they make almost all the pump insets and they have some great info for us all. you can listen to wherever you get your podcasts or if you're listening to this as on a podcast app, just go back an episode. That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

    Type 1 Diabetes & Evidence-Based Hope

    Play Episode Listen Later Nov 30, 2021 53:17

    Is the news about diabetes better than many of us believe? A deeper look into some important studies with two leaders in the diabetes community. Join the Diabetes Connections Facebook Group! Dr. Bill Polonsky of the Behavioral Diabetes Institute and Dr. Steve Edelman, founder of TCOYD and an endocrinologist who lives with type 1, join Stacey to talk about how to go through the evidence that's sort of hiding in plain sight.. to live well with diabetes. Sign up for our newsletter here Tell me something good: a young woman's letter to a major clothing company sparks a change – it's all about the pockets. Thanks to Athleta for a new product! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. More about the DCCT Trial More about the EDIC Trial ----- 00:00 Show open: what's on this week? 1:15 Stacey welcome: 250 shows! Check out our search page and browse by subject or keyword  5:00 Interview with Drs. Polonsky & Edelman 48:30 TMSG: new sweatshirt from Athleta inspired by a teen with type 1 52:00 You can still pre-order Stacey's book. Available everywhere in just a few weeks! ----- 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

    Think big (and don't be an idiot) - Dr. Partha Kar on the future of diabetes care

    Play Episode Listen Later Nov 30, 2021 32:53

    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

    "Wait Wait.. Don't Poke Me!" The Diabetes Game Show

    Play Episode Listen Later Nov 23, 2021 39:58

    It's time for one of our favorite episodes of the year! Wait Wait! Don't Poke Me, the diabetes game show! Taped this time around for the Children with Diabetes Friends for Life fall conference. If you're familiar with NPR's Wait Wait Don't Tell Me, a lot of this will sound familiar, just with a diabetes twist! Our panelists tackle trivia, limericks and we try to "bluff the listener" with tales of diabetes in the wild. Can you guess which Olympian with T1D really had a wildlife encounter? Big thanks to our panelists: Nia Grant, Kyle Banks and Matt Point. They all have a connection for FFL and took time out of their busy schedules to goof off with me. There is a video version of this show over on our YouTube channel if you prefer to play along over there. 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 coming soon

    In the News.. T1D gene replacement therapy, BG finger scan, insulin on Olympic skis and more!

    Play Episode Listen Later Nov 19, 2021 6:52

    It's In the News... the only Diabetes newscast! This week learn about: The DIY #WeAreNotWaiting movement gets a medical write up in the Lancet, a big move for #T1D stem cell therapy and identifying the cause behind a common #T2D condition. We also look at coffee & gestational diabetes and find out why the molecular structure of insulin pictured on an Olympic-hopeful's skis -- Join Stacey LIVE every Wednesday at 4:30pm EDT 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: Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I'm going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast.. XX In the News is brought to you by The World's Worst Diabetes Mom, Real life stories of raising a child with diabetes. Bit of breaking news here.. we just found out today we won a pretty big deal prize. American Book Fest announced The World's Worst Diabetes Mom is the winner of their Best New Non-Fiction category! Huge thanks to the judges and to Spark Publications. How about that? You can find the book – it's my book if that's not clear - in paperback, on Kindle or as an audio book – all at Amazon.com. -- XX Our top story.. a stamp of professional approval for the do it yourself #WeAreNotWaiting movement. Over 40 doctors, legal experts, and other healthcare professionals published a consensus statement in The Lancet, one of the most prestigious and respected medical journals. The authors conclude: “Although we do not suggest that open-source AID systems be universally recommended over commercial options, strong ethical reasons support the use of open-source AID systems, with safety and effectiveness data derived from real-world evidence." Essentially, they say it's time for the medical industry to take these methods seriously, and to establish some standards and protocols to help further access and safe use. https://mashable.com/article/doctors-approve-diy-diabetes-tech-treatments XX Stem cell therapy for type 1 moves forward. CRISPR therapeutics and Viactye announce approval for a clinical trial application. We've covered this before and talked to ViaCyte on the podcast. They've been moving forward with stem cell research and you may know Crispr as a gene editing platform. The idea is that together these companies could find a functional cure for type 1. This is a Phase 1 clinical trial designed to look at safety and efficacy. They expect to start enrolling patients by the end of the year. https://finance.yahoo.com/news/crispr-therapeutics-viacyte-inc-start-133000366.html XX A new study suggests a lack of a specific molecule in red blood cells may be the root cause of vascular problems in people with type 2. Red blood cells are important for many reasons, one of which is maintaining what's called cardiovascular equilibrium. This is partly achieved through the production of nitric oxide. This is a problem in people with type 2 and these researchers speculate it's because they have much less of something called micro-RNA-210 than those without diabetes. Interestingly, blood sugar control through medication appeared to cause no major improvement here – it didn't affect the red blood cells. https://www.medicalnewstoday.com/articles/scientists-identify-new-cause-of-vascular-injury-in-type-2-diabetes XX Good news for pregnant coffee lovers: Consuming a low amount of caffeine during pregnancy could help to reduce gestational diabetes. This is one of those confusing health issues that seem to change every year.. right? Drink more coffee, drink less coffee.. this study says if you're already drinking coffee or any caffeine, about two cups a day is just fine and may reduce your risk of gestational diabetes. If you're not already a coffee drinker, there's really no reason to start. There were no statistically significant differences in blood pressure, preeclampsia, or hypertension between those who did and did not drink caffeine during pregnancy. https://www.news-medical.net/news/20211111/Low-amount-of-caffeine-intake-during-pregnancy-may-help-reduce-gestational-diabetes-risk.aspx XX The government of Japan announced this week that a company there has developed quote - the world's first blood glucose level sensor that requires no blood sampling. The sensor uses cutting-edge laser technology for a much brighter infrared laser, enabling anyone to hold a fingertip over its light for about 5 seconds to easily measure their blood glucose levels. The company is now working on mass production. Not a lot of info here but the website says 2023 is their goal for launch. http://www.light-tt.co.jp/?lang=en&fbclid=IwAR0h6rlJKXwxEuUDQ8O0_KFYLCg885_pITiVE9xPjgsIXLPCaK9cuJntjSo XX Scotland has become the world's first country to begin routine testing of C-peptide levels in patients with type 1 diabetes. Couple of goals here they say… first to identify people who have retained robust natural insulin production and second.. to see some who might not have type 1 at all. C-peptide is a substance that is created as a byproduct of natural insulin production. A preliminary study looked at 850 people with type 1 and found that about 13% had more than what's thought to be the usual expectation of insulin production. They also found that 5.1% were reclassified to type 2 diabetes and 1.6% were reclassified to monogenic diabetes. Many of those people didn't need to take insulin any more. One quick note – I've seen this article floating around which says that half of the people in this study did NOT have type one. That's not the case at all. The only thing I can think is that someone misread the 5.1% reclassified to type 2 and misread it as 51%? But it's a tiny number. Many more people are misdiagnosed as type 2 when they have LADA or type 1. https://www.diabetesdaily.com/blog/why-scotland-is-now-testing-the-c-peptide-levels-of-everyone-with-type-1-diabetes-691720/ XX Finally Something really unique for Diabetes Month. A ski company has created a custom set – with the pattern of the chemical composition of insulin. I'll show it here and in the FB group for those listening.. Lauren Salko is a cross racer who lives with type 1. Elan Skis worked with her to design the skis and they're donating all the profits to Children with Diabetes.. It's the Limited edition Ripstick 94 W ski. Lauren Salko has an eye on next year's Olympics.. we'll be watching. https://elanskis.com/lauren-salko quick reminder that the podcast this week is all about less stress for the holidays. It's an ask the D-Moms and guys.. I got an amazing message from a mom who said she quote – cried tears of relief listening to it. I remember how tough it is at first.. but really, we can make great memories and worry less. Let the Dmoms help! you can listen to wherever you get your podcasts or if you're listening to this as on a podcast app, just go back an episode. That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

    Ask the D-Moms Holiday Edition - More Fun, Less Stress (we promise!)

    Play Episode Listen Later Nov 16, 2021 40:15

    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

    In the News.. Tandem & Omnipod updates, T1D kids & COVID and more!

    Play Episode Listen Later Nov 12, 2021 6:06


    It's "In the News..." the only diabetes newscast. This week we find out about: SGLT2 inhibitors, more evidence this T2D med works for T1D, Tandem & Insulet earning calls: what you need to know, Which kids with T1D did even better during COVID? How you sleep could increase risk of gestational diabetes, what's going on for Diabetes Awareness Month and lots more! Have 5 minutes? Give it a listen! -- Join us LIVE every Wednesday at 4:30pm EDT 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:   Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I'm going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast.. XX In the News is brought to you by The World's Worst Diabetes Mom, Real life stories of raising a child with diabetes. Available in paperback, on Kindle or as an audio book – all at Amazon.com -- XX Our top story, evidence that SGLT-2 inhibitors can help kidney and heart health in people with type 1. These are diabetes drugs that are already shown to lower blood sugar levels – they have brand names like Invokana and Jardiance – but they are not approved for T1D in the United States. The problem is that they can lead to DKA even with normal glucose levels. However, they are approved in Europe and many advocates say they can be used safely if people no to monitor closely. https://www.news-medical.net/news/20211107/Study-examines-benefits-of-SGLT2-inhibitors-in-individuals-with-type-1-diabetes.aspx XX Some tidbits in Tandem's third quarter investment call last week. CEO John Sheridan says they plan to ask the US FDA this year to approve Control IQ down to age 2 – right now it's only approved to age six. Also asking for expanded labeling for people with type 2. Mobile bolus or bolus by phone still out there waiting for approval – Sheridan says the FDA last asked them any questions in August. He says they have three initiatives for 2022: filing for the Tsport pump, integrating the upcoming Dexcom G7 and moving ahead with their partnership with Abbott's Libre. Sheridan thinks it'll be a matter of a few months before Tandem pumps integrate the G7 saying, “When it comes to Dexcom, we've integrated three generations of their sensors already. We're on the fourth. We know how to do this” I hadn't heard this, but Sheridan says the Libre had a bit of a hiccup with the FDA approving it as an iCGM, that's a newer designation… because taking vitamin C can throw the readings off.. but he believes they've addressed that. We'll follow up. https://www.fool.com/earnings/call-transcripts/2021/11/03/tandem-diabetes-care-inc-tndm-q3-2021-earnings-cal/ XX Insulet also had their quarterly call – CEO Shacey Petrovic says she's still optimistic about Omnipod 5 being approved this year.. she says they've had a lot of back and forth with the FDA in the last few months and that's what makes her more confident. Other tidbits.. Omnipod reports that 80% of their customers were previously on multiple daily injections only .. no prior pump experience. They think when Omnipod 5 comes out there will be more competitive switchers from other pumps. They reiterated that it will be a limited release when approval comes with a gradual rollout in the US. https://www.fool.com/earnings/call-transcripts/2021/11/04/insulet-corporation-podd-q3-2021-earnings-call-tra/ XX Really interesting news about some children in the US with type 1 during the pandemic – they had more time in range and lower A1Cs during the first year of the pandemic compared to the year before.  They also saw their doctors more, even though 90-percents of the visits were virtual. This was a group of kids ages 1-17 all of whom use a CGM. The researchers say they want to take a closer look to try to figure out why this was the case: speculation ranges from more oversight from parents to flexibility in schedules. I can say this definitely happened in my house.. however I'll also throw in that my son started on his first hybrid closed loop system in Jan 2020 just before the pandemic– Tandem's CIQ - and that made a huge difference, especially when we were stuck at home and he was eating at 2am. They don't mention the insulin delivery system here.. just that every kid had a CGM. https://www.healio.com/news/endocrinology/20211108/metrics-improve-for-us-children-with-type-1-diabetes-using-cgm-in-first-year-of-covid19 XX Something called sleep-disordered breathing may play a role in gestational diabetes and insulin resistance. There isn't a lot of research here.. This study looked at women who had risk factors for obstructive sleep apnea, a form of sleep disordered breathing that has been linked with high blood pressure, heart disease, and Alzheimers. The data suggests those with it may enter pregnancy at higher risk for gestational diabetes and recommend more screening. They added further investigation is needed to see if treating the breathing issue in early pregnancy could improve glucose levels. https://www.contemporaryobgyn.net/view/women-with-sleep-disordered-breathing-linked-to-insulin-resistance-and-gestational-diabetes-risk XX Fun story in football this week: Mark Andrews and Blake Ferguson will face each other in the big Thursday night NFL game. Andrews is with the Baltimore Ravens, Ferguson plays for the Miami Dolphins. They both live with type 1.  It's thought this is the first time two NFL players with T1D have faced each other. They each use Tandem pumps, btw, so expect to see some posts from that company promoting the game. XX Big grant for Beyond Type 1's DKA Awareness Campaign. The Helmsley Charitable Trust is giving them more than $300-thousand dollars for their grassroots messaging movement. This provides posters to schools and communities and sends literature to pediatricians. Almost 50%  patients under the age of 18 in the U.S. are in DKA when diagnosed with Type 1. https://beyondtype1.org/beyond-type-1-receives-300985-helmsley-charitable-trust-grant-for-dka-awareness-campaign/ XX Lots of good stuff happening for Diabetes Awareness Month.. Dexcom is partnering with Nick Jonas and Patti LaBelle… they say to help the diabetes community feel seen and heard, while  advocating for improved access to diabetes care. Nick Jonas has been sharing people living with diabetes on Instagram and that's been really fun to see. Patti LaBelle lives with type 2.  She spoke to Congress earlier this month to talk about better access for people with Type 2 diabetes, especially in communities of color. XX Great round up of this kind of stuff – what the big organizations are doing for Diabetes Awareness Month over at Diabetes Mine.. I'll link that up in the show notes; https://www.healthline.com/diabetesmine/diabetes-awareness-month-2021#dexcom XX quick reminder that the podcast this week is our first ever tech roundtable. Really great discussion with two guys who follow this stuff very closely – Kamil Armacki better known as Nerdabetic and Chris Wilson. We go through everything in front of the USA FDA, some stuff that's approved in Europe and talk about what's coming next. you can listen to wherever you get your podcasts or if you're listening to this as on a podcast app, just go back an episode. Next week: holiday help – ask the Dmoms is back to help you through what can be a stressful time of year. That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.  


    Diabetes Tech Round Table: What are we waiting for?

    Play Episode Listen Later Nov 9, 2021 53:32


    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


    In The News.. Sugarmate update, new BG meter approved, T1D scholarships and more!

    Play Episode Listen Later Nov 5, 2021 6:17

    This week, the top diabetes stories and headlines in the news include: the popular Sugarmate app loses Dexcom connection, interesting study about internal clocks and type 2 diabetes, the FDA approves new "POGO" BG meter, T2D remission might be more common than thought, Type 1 college scholarships and lots more. -- Join us LIVE on Facebook and YouTube every Wednesday at 4:30pm EDT 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 Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I'm going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast.. XX In the News is brought to you by The World's Worst Diabetes Mom, Real life stories of raising a child with diabetes. Available in paperback, on Kindle or as an audio book – all at Amazon.com -- Top story this week.. Big issue for a popular app – users of Sugarmate have been told as of this week – November 4th to be precise – customers in the US will lose connection. Those outside the US have seen issues since October. This is because of a change Dexcom made to its servers. Sugarmate says Dexcom is working with them to fix the issue – basically they're going to join the Dexcom Partner API – we've told you about that, it's how third party apps can talk with Dexcom.. In the meantime, Nightscout is probably the best alternative if you use Sugarmate. Quick note: Tandem acquired Sugarmate last year. And you'll recall that Dexcom does own a small piece of Tandem. So it looks like this will all probably work out.. but exactly how in the long run will be interesting to watch. -- https://help.sugarmate.io/en/articles/5678010-faqs-sugarmate-and-dexcom-connection?mkt_tok=MzQ4LVJYVi03MDUAAAGAgZ5w-m8YKeY90ybxznIKZ4b4XWStjdvSjf7vH3dNx8PMDzDa9sJP0En6odZtM-Z4UthLL9z7MNV86wnQ4R9o61-islyzvtyvg13By4FB5A&fbclid=IwAR39j2vxjr3JuUbcQdruIAttCSuRl5dD1jVbdNKrm1b5JQpuyYlQiwH1xXs XX A study of “dented” internal clocks seems to build evidence for a theory that people who work late or irregular hours are more at risk for diabetes. Researchers at the University of Pennsylvania created a timing mismatch by altering the function of a molecule within the brains of mice.. shortened their circadian rhythms from 24 to 21 hours. These mice gained more weight, had higher blood sugar, and fattier livers. This all corrected when the researchers changed their environment – sleep and meals – to match that shorter, 21 hour day. They say it might be a good idea for shift workers to try to do the same – eating meals and going to bed in a cycle that works better for them. https://www.pennmedicine.org/news/news-releases/2021/october/a-dented-internal-clock-provides-insight-into-shift-workers-weight-gain-and-diabetes XX New Blood glucose meter gets FDA approval. This is the POGO … with 10-test cartridge technology. The strips and lancers are loaded inside already, so you don't carry anything separate. You just put your finger down and press the button. They're calling this automatic blood glucose monitoring or ABGM. On the inside it's still a basic finger stick and blood collection. But you don't see any of that on the outside. Of course, there's a Bluetooth connected app for you and your healthcare team to use. The product is called POGO. the app is Patterns. https://finance.yahoo.com/news/pogo-automatic-one-step-blood-113000135.html XX New numbers out for diabetes around the world and the International Diabetes Federation says it's a pandemic of unprecedented magnitude. The IDF says more than 10-percent of adults worldwide live with diabetes.. by 2045 that number will be one in eight. The report also says that one in two people with diabetes across the world who need insulin cannot access or afford it. The theme of World Diabetes Day this November 14th is Access to Diabetes Care. https://www.prnewswire.com/news-releases/diabetes-is-a-pandemic-of-unprecedented-magnitude-now-affecting-one-in-10-adults-worldwide-reveals-the-international-diabetes-federation-301413238.html XX Good news for people with type 1.. when more intensive glucose management starts early, it greatly reduces the future risk of heart and kidney issues. This info comes from a look back at the DCCT and EDIC trials – which are 100% worth looking into if you aren't familiar with them. By the way, in these trials “intensive” glucose control was pegged at an A1C of 7 and the riskier group had an A1C of 9 or above. The earlier the A1C was brought down to 7, the less risk of complications. https://www.endocrinologyadvisor.com/home/topics/diabetes/type-1-diabetes/earlier-intensive-type-1-diabetes-treatment-reduces-long-term-cardiovascular-and-kidney-complications/ XX How common is type 2 remission? It's hard to say but a new study from Scotland suggests it's more common than we might think. These University of Edinburgh scientists say in Scotland, it's one in 20. They looked at everyone in the country over the age of 30 with type 2, based on A1C levels -that's about 160-thousand people. Then they said during the study year, 77-hundred people went into remission, which means their A1Cs dropped to 6.5 without medication. Those people were older, had lost weight since their diagnosis, had no history of glucose lowering therapy or bariatric surgery, and generally had healthier blood readings at the time of their diagnosis. https://www.sciencealert.com/reversing-type-2-diabetes-seems-to-be-more-common-than-scientists-realized XX College scholarship contest to tell you about. Senita (sen-EE-tuh) Athletics is partnering with Insulet to award four $5,000 scholarships to people with type 1 diabetes. In honor of National Diabetes Awareness Month, the athletic fashion wear maker is looking for 'Senita Scholars.” The co-founders have a younger brother with type 1 and their fitness gear is known for really good pockets. To be eligible, students across the U.S. must be either a graduating senior in high school or a current undergraduate and have type 1 diabetes. Applications close on Nov. 30. https://finance.yahoo.com/news/senita-athletics-partners-insulet-corporation-150000801.html XX Lots of events happening around the diabetes community for this awareness month. Friends for Life virtual starts next week as does Together T1D. I mention this because it's got a powerful lineup, with Olympian Charlotte Drury, Pietro Marsala, the first person with T1D to get a commercial pilot's license in the US and more… XX And finally, a big happy diaversary to a previous guest of the podcast – Yerachmiel Altman is marking 60 years with type 1 on November 8th. I'll link up my episode with him.. he worked on early insulin pumps and has worn every bit of tech you can think of.. Wishing you continued good health and thank you for sharing your experience and wisdom with us. -- quick reminder that the podcast this week is with Ken Rodenheiser – a diabetes educator who now works with Dexcom. He explains how he went from angry and lonely as a teen, to helping others start off on the right foot at diagnosis. It's a great story you can listen to wherever you get your podcasts or if you're listening to this as on a podcast app, just go back an episode. That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.  

    From Angry T1D Teen to Diabetes Educator: Meet Kenny Rodenheiser

    Play Episode Listen Later Nov 2, 2021 44:41

    Kenny Rodenheiser is a diabetes educator, and a big part of the Children with Diabetes community. But when he was diagnosed as a young teenager, he felt angry and isolated and wanted nothing to do with anything like a diabetes conference. Kenny talks about what changed his mind, his road to becoming an educator and his current role at Dexcom. 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

    In the News.. Israel implant for type 2, sports study for T1D kids, Tidepool period project and more!

    Play Episode Listen Later Oct 29, 2021 5:44

    This week, In the News our top stories include: Israeli researchers test an implant for type 2 remission, a new sports study looks at kids with type 1 on multiple daily injections, a new camera app to turn your old meter into high-tech info, the Tidepool period project, type 1 in the World Series and more! Join us LIVE every Wednesday at 4:30pm EDT 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 Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I'm going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast.. XX In the News is brought to you by Real Good Foods! Find their breakfast line and all of their great products in your local grocery store, Target or Costco. XX Our top story: Lucky mice but will it work in people? Israeli scientists say they have a one-time implant that brings blood glucose into non-diabetic range. The implant is healthy tissue grown in a lab – the glucose dropped by an average of 26-percent and stayed there the four months of the study. The engineered cells absorbed sugar, improved glucose levels and also improved absorption in other muscle cells. Long way to go before this is tried in people. https://www.timesofisrael.com/diabetes-reversed-in-mice-for-4-months-after-one-time-implant-from-israeli-lab/ XX Sports and kids with type 1 can be a tough balance, especially on multiple daily injections. A new study called the Car-2-Diab trial looked at what changes work well for teens during exercise. There's a lot here, so I'd urge you to follow the link I'll provide, but basically everyone in this small study experienced overnight hypos and some high BG just after exercise. The most common fix was a drop in total basal insulin. These researchers say sports and type 1 have a – quote - “irreducible level of confounding factors.” Which.. from personal experience, I can say.. I agree. https://www.endocrinologyadvisor.com/home/topics/diabetes/type-1-diabetes/execise-impacts-insulin-doses-in-children-with-type-1-diabetes/ XX Big new study about Medtronic's 780G pump, available in Europe and in front of the US FDA right now. This looked at 3200 kids age 15 and younger. Time in range was 74% overall and overnight 82%. The 780G uses the Guardian Sensor 3 as a hybrid closed loop where you still bolus for meals. Overall these kids saw a 12-percent bump up in time in range.. which is a better boost than Medtronic's first hybrid closed loop system, the 670G. https://www.fiercebiotech.com/medtech/medtronic-s-newest-minimed-insulin-pump-improves-glycemic-control-children-study XX Good write up about adults with type 1 which make up more than half of all new cases of type 1. This summary in the ADA publication Diabetes Care shows that there are big differences between adult and childhood onset, many of which aren't understood. This also points out that misdiagnosis occurs in nearly 40% of adults with new type 1 diabetes, with the risk of error increasing with age. https://care.diabetesjournals.org/content/44/11/2449 XX New app to retrofit a regular old blood glucose meter and make it a bit more high tech. Computer vision technology developed by University of Cambridge engineers can read and record the glucose levels, time and date displayed on a typical glucose test.. it does this with just the camera on a mobile phone. The technology, which doesn't require an internet or Bluetooth connection, works for any type of glucose meter, in any orientation and in a variety of light levels. The app is called Gluco-Rx Vision. You think about a lot of the services and programs that have popped up that require Bluetooth and remote monitoring – this helps people take advantage without having to buy a new meter. https://www.myvetcandy.com/newsblog/2020/11/14/computer-vision-app-allows-easier-monitoring-of-diabetes XX Tidepool gets a boost for it's Period Project… from Amazon. The Tidepool Period Project is trying to address the unmet needs of people with diabetes who menstruate. This funding from Amazon Web Services will go to supporting prototype concepts and user interface designs at Tidepool. There's not a lot of data on diabetes and periods despite the fact that we all pretty much know anecdotally that there's a lot going on in terms of glucose levels and hormones. Kudos to Tidepool for gathering this info for future research. https://www.thedailytimes.com/business/diabetes-and-femtech-intersection---tidepool-receives-aws-financial-support-for-tidepool-period-project/article_7b5c40fb-3020-5428-aa0b-69ea242675ec.html XX More to come, including diabetes in the world series.. But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—we really like their breakfast line.. although Benny rarely eats the waffles or breakfast sandwiches for breakfast.. it's usually after school or late night. Or sometimes it's dinner. You can buy Real Good Foods online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… And it's sports news! As of this taping the Atlanta Braves have won Game 1 of the World Series.. with Adam Duvall getting a 2-run home run. We've high-lighted Duvall here before.. he was diagnosed with type 1 at age 23. We've seen a lot of posts on social media of him taking the time to meet with families during the season, signing autographs and taking photos with his pump. Good stuff. -- And finally.. Just as the newest Apple watch was released - without blood glucose monitoring.. rumors are already swirling about the next version of the watch. As we've said.. you'll know it's real when they start clinical trials.. but Dexcom's Chief Technology officer talked to me this week about their new agreement with Garmin and looked ahead to the G7 and possible non invasive blood glucose monitoring. Interesting stuff you can listen to wherever you get your podcasts or if you're listening to this as a podcast, just go back an episode. That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

    "Amplify the Value of CGM" - Dexcom's Jake Leach talks about Garmin, the G7 and Dexcom One

    Play Episode Listen Later Oct 26, 2021 36:38

    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

    In the News.. Dexcom Follow update, glucose eye scanner, stem cell research and more!

    Play Episode Listen Later Oct 22, 2021 7:05

    This week "In the News.." our top stories include: New features for Dexcom Follow, Vertex makes stem cell progress on a functional cure for type 1, funding comes through for a eye scan for glucose levels, a new aggregate diet/nutrition study measures T1D risk in babies, Medtronic snaps up a patch pump company and a lot more.. Join us LIVE every Wednesday at 4:30pm ET for the top diabetes headlines of the week. 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:   Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I'm going to link up my sources in the Facebook comments – where we are live – and new this week – Live on YouTube..  and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule. XX In the News is brought to you by Real Good Foods! Find their breakfast line and all of their great products in your local grocery store, Target or Costco. XX Earlier today, Dexcom released some new features for its Follow app. It now includes a Homescreen Widget to an Apple device, a Quick Glance for Android users. You can submit a Technical Support Request or Request a Callback via Follow's Contact Menu. I assume that means you can request replacement sensors from within the app? And you can Access the Status page via Follow's Help Menu to check the status of any of the Dexcom systems. This is version 4.4 of Dexcom Follow and only applies to US users. XX Some news in the stem cell race – a few companies now looking at this as a practical cure for type 1. Vertex announced that the first patient in its islet cell replacement therapy is doing well – with a lower A1C and less insulin needs. The person is on immunosuppressive therapy and does still need to use insulin – although 90-percent less. This caught my eye - this person was diagnosed 40 years ago – this isn't a recent diagnosis. They also had incredible hypoglycemia, up to 5 episodes a day and pretty much have their life back now. One person does not make a cure but it's good to see these therapies moving forward. You may recall Vertex acquired Semma and joins ViaCyte which has an encapsulated stem cells – the hope for all long-term is that no immune suppressants would be needed. https://www.biospace.com/article/vertex-s-type-1-diabetes-therapy-shows-promise-in-early-stage-trial/ XX A new eye scan that could help diagnose diabetes is moving ahead. British-based startup Occuity has received investment funding for the Occuity Indigo, a non-contact, optical glucose meter.. The company says it's different from the failed Google contact lens… the Google version measured fluid.. but the Occuity looks within the eyeball. The company says quote - it is a transparent, stable environment whose glucose levels correlate with those of the blood. The Occuity Indigo sends a faint beam of light into the eyeball and measures the light that bounces back into the device. It can infer glucose levels in the eye based on the refraction of the returning light. https://www.uktech.news/featured/eye-scan-for-diabetes-berkshire-startup-is-developing-revolutionary-medical-technology-with-285m-funding-20211019 XX Medtronic's in talks to snap up what sounds like a pretty advanced patch pump from an Israeli company called Triple Jump. The Triple Jump system has a compact, fully portable, battery-operated miniature insulin pump and hand-held controller and includes all supporting accessories and sterile single-use disposables. The release here says it will be included in a future artificial pancreas system and that Medtronic plans to integrate Triple Jump's device to improve its pumping capabilities.   https://en.globes.co.il/en/article-medtronic-in-talks-to-buy-israeli-co-triple-jump-for-300m-1001387534 XX No surprise but important info – using a flash glucose moniotor can improve A1Cs and reduce DKA cases. Big study in Scotland using the Libre – called a flash monitor because this version isn't continuous – you have to swipe to see your glucose. The technology has been free in Scotland since 2018 – so use in people with type 1 went from about 3 percent in 2017 to 46 percent in 2020. Improvement was seen across all ages, genders and socio-economic lines. Also.,regardless of prior or current pump use, completion of a diabetes education program, or early flash monitoring adoption. https://www.endocrinologynetwork.com/view/flash-glucose-monitoring-lowers-hba1c-rates-of-dka-in-patients-with-type-1-diabetes XX Controversial but more research into preventing type 1.. new studies showing that longer breastfeeding and later introduction to gluten may reduce the risk. This was a look at aggregate studies in Sweden.. which has the second highest incidence of type 1 in the world. (number one is Finland – I knew you were going to ask) For babies nursed for at least six to 12 months, the risk of developing type 1 went down 61 percent. Gluten at three to six months of age lowered the risk 64 percent. The studies also pointed to a protective effect of vitamin D supplementation during infancy. These researchers are careful to say that this isn't definitive but instead points to the need for more studies of babies' diet and vitamin intake and the risk of type 1. https://www.news-medical.net/news/20211018/Breastfeeding-and-later-introduction-to-gluten-may-have-a-protective-effect-against-type-1-diabetes.aspx XX Some early news about type 1 diabetes, pregnancy and the gut microbiome. This study shows pregnant women with type 1 had a decrease in "good" gut bacteria and an increase in 'bad' gut bacteria that promote intestinal inflammation and damage to the intestinal lining. These changes could contribute to the increased risk of pregnancy complications seen in women with type 1 This is very early on.. the next stage of the project was to identify markers that would determine which women with type 1 diabetes might benefit from safe interventions during pregnancy, including dietary changes. https://medicalxpress.com/news/2021-10-dietary-pregnancy-complications-women-diabetes.html   XX More to come, including mental health help and a bit of a correction on my part. But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—we really like their breakfast line.. although Benny rarely eats the waffles or breakfast sandwiches for breakfast.. it's usually after school or late night. He ate like four waffles at ten o clock at night the other day. You can buy Real Good Foods online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… -- We talk a lot about mental health and diabetes and how there just aren't enough resources to help. I want to call your attention to a free virtual workshop by the Center for Diabetes and Mental Health. This is tomorrow as you watch me live – and if you're listening or watching after I'd still urge you to check out the resources. This is from Dr. Mark Heyman who I've had on the show and who has his own podcast. Dr. Heyman is a diabetes psychologist and Certified Diabetes Care and Education Specialist and he lives with type 1. https://cdmh.org/ https://www.reimaginet1d.com/c/reimagine-t1d?fbclid=IwAR1dsPn5wefVM3vnypUgRuBf8OA9qL-suMKlbdPZeASRXDyFuneTAYQ3igw XX Bit of a correction to last week's news.. I had speculated whether the Dexcom/Garmin partnership which uses the name Connect IQ had anything to do with Tandem's Control IQ. I heard from a lot of you – apparently Garmin's whole app system is just called Connect IQ.. and has been for years. But I did get that interview with Dexcom I mentioned.. so that will be our long-format interview episode coming up on Tuesday. That's a chat with the chief technology officer of dexcom The episode out right now is all about Halloween – it's an ask the d mom conversation with my wonderful friend moira mccarthy. We talk about everything from candy to getting your kids insulin pump under the costume to sugar free candy from well meaning neighbors That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

    Halloween Advice from D-Moms Who've Been There (Classic Episode)

    Play Episode Listen Later Oct 19, 2021 36:05

    The first Halloween when your child has diabetes can seem impossible, but the D-Moms are here to help! Stacey & Moira McCarthy answer listener questions and share stories about their experiences. They can help make Halloween less scary, more fun and show you that there are a lot of options for your family. Stacey also shares some thoughts about her trip to the She Podcasts LIVE! conference last week. (The Halloween conversation first aired in 2019) 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 coming soon: 

    In the News.. Dexcom and Garmin partner, faster insulin tested, once a week basal and more...

    Play Episode Listen Later Oct 15, 2021 6:59

    Top stories this week include: a new adjunct therapy is being tested for type 1, Dexcom and Garmin will officially work together (no more DIY needed), once weekly basal insulin study, can psychedelic drugs prevent type 2?! and Australia bets on Rugby for diabetes education 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:  Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and I am on location this week. I'm at the She Podcasts LIVE conference.. but the news doesn't wait. So.. these are the top diabetes stories and headlines of the past seven days. As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule. XX In the News is brought to you by Real Good Foods! Find their breakfast line and all of their great products in your local grocery store, Target or Costco. XX Our top story.. There's a lot of buzz these days around adjunct therapy for diabetes.. basically another treatment along with insulin. Earlier this year, a drug so far just named TTP-399 got FDA breakthrough therapy approval. A new study shows it works well to keep people with type 1 out of DKA. This was small study, 23 people. They found that TTP-399 can help lower blood glucose without increasing the risk of DKA. It's important because other adjunct therapy.. such as S-G-L-T-2 inhibitors do help lower blood glucose, but the FDA has said they cause too much of a risk of DKA in people with type 1. Those are brand names like Invokana and Jardiance. Pivotal trials of TTP-399 begin later this year. https://www.biospace.com/article/vtv-therapeutics-type-1-diabetes-drug-shows-promise/ XX New partnership announced today - Dexcom and Garmin. You will still need your phone.. I knew you were going to ask.. but with the new Dexcom Connect IQ apps you can now see your Dexcom G6 info on your compatible Garmin smartwatch or cycling computer. Jake Leach, chief technology officer at Dexcom says.. Garmin is the first partner to connect through the real-time API, which we told you about a few months back. Basically, you'll be seeing more connectivity without having to use a third party, community sourced work around which a lot of people do now. The name here is interesting, right? Connect IQ, very similar to Tandem's Control IQ. But since Dexcom owns a bit of Tandem, maybe that's no coincidence. I've requested an interview with Dexcom so maybe we'll find out. garmin.com/newsroom, email media.relations@garmin.com, or follow us at facebook.com/garmin, twitter.com/garminnews, instagram.com/garmin, youtube.com/garmin or linkedin.com/company/garmin. XX New study about time in range, hybrid closed loop systems and faster insulins. The headline here is that using Fiasp with the Medtronic 670g system resulted in greater time in range. How much? The Fiasp group spend 82 point 3 percent time in range.. the Novolog group spent 79.6 percent time in range. This was over 17 weeks and the participants mostly bolused AT meal times, not before, no prebolusing. The researchers echo what I was going to say here, quote – “While the primary outcome demonstrated statistical significance, the clinical impact may be small, given an overall difference in time in range of 1.9%.” So just a heads up if you see headlines screaming about how much faster Fiasp is because of this study. https://www.endocrinologyadvisor.com/home/topics/diabetes/type-1-diabetes/fast-acting-insulin-aspart-versus-insulin-aspart-closed-loop-type-1-diabetes/ XX People who have tried a psychedelic drug at least once in their lifetime have lower odds of heart disease and diabetes. This is a University of Oxford study published in Scientific Reports. These researchers examined data from more than 375-thousand Americans who had taken part in an annual survey sponsored by the U.S. Department of Health and Human Services. Participants reported whether they had ever used the classic psychedelic substances including LSD, mescaline, peyote or psilocybin. They also reported whether they had been diagnosed with heart disease or diabetes in the past year. The researchers found that the prevalence of both conditions was lower among psychedelic users. While no one is recommending you start taking mushrooms to avoid diabetes.. there's a growing push to start serious research to investigate the link between psychedelics and cardio-metabolic health. https://www.psypost.org/2021/10/psychedelic-use-associated-with-lower-odds-of-heart-disease-and-diabetes-study-finds-61958 XX Update on the once a week basal insulin I've been reporting on for a while.. both Lilly and Novo Nordisk are testing their own version of this.. this most recent study looks at the Lilly version called Tirzepatide. These researchers found it to be safe and effective with lower rates of hypoglycemia and slightly lower A1Cs than daily basals like Lantus or Tresiba. Lots of studies ongoing here, for both brands of potential once a week dosing, including a large phase 2 program that includes people with type 1. https://www.healio.com/news/endocrinology/20211012/novel-onceweekly-basal-insulin-safe-effective-in-type-2-diabetes XX More to come, including how rugby and diabetes education may go together.. But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—we really like their breakfast line.. although Benny rarely eats the waffles or breakfast sandwiches for breakfast.. it's usually after school or late night. Ugh.. do your teens eat breakfast? You can buy Real Good Foods online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… -- Getting out of the doctor's office and into something that people can actually relate to.. Diabetes Australia is using rugby to teach men about the risks of type 2 diabetes. League Fans in Training (League-FIT) is based on a Scottish initiative that used football teams to deliver exercise and nutritional advice to overweight and obese men. The program includes education and goal setting and a rugby league-based exercise session, delivered by coaches and some of the club's players. What I really like about this is that -from what I can tell - they're focusing on small changes and not telling these guys to give up everything they like to eat and drink or that they have to become professional players to get a little bit more fit. Imagine if NFL players had a clinic for fans to come and learn a little bit about fitness and nutrition? Again, not to be pros.. just to live a little better and lower risks of type 2. https://www.diabetesaustralia.com.au/news -- On Diabetes Connections this week, we're talking to a mom with type 1 who has had two children during the pandemic. One last summer and the other just a few days before our interview! That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

    A new mom (twice!) during COVID, Vanessa Messenger shares her story and her new book about T1D

    Play Episode Listen Later Oct 12, 2021 32:42

    Pregnancy with type 1 is never simple, but this week's guest faced an unusual complication. Vanessa Messenger has had two babies during the COVID pandemic! Vanessa, who lives with T1D, gave birth to her daughter in the summer of 2020. She just had another baby - 15 days before our interview. Her new book is launching this month. Called, "Teddy Talks: A Paws-itive Story About Type 1 Diabetes" it features a little dog who helps explain what kids should know about check glucose, using a CGM, taking insulin and a lot more. Teddy is modeled after Vanessa's real-life dog, who already looks like a character in a children's book. 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 coming soon

    In the News... Medtronic recall, Inhaled insulin for kids, T1D adults called "forgotten population" and more!

    Play Episode Listen Later Oct 8, 2021 6:39

    It's "In the News..." the only LIVE diabetes newscast! Top stories this week: Medtronic expands its insulin pump recall, Afrezza inhaled insulin pediatric studies to begin, new report says adults w/T1D are a "Forgotten population," new research into type 2 diabetes and statins and more! Join us each Wednesday at 4:30pm EDT live at https://www.facebook.com/diabetesconnections   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: Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule. XX In the News is brought to you by Real Good Foods! Find their Entrée Bowls and all of their great products in your local grocery store, Target or Costco. XX Our top story this week.. Medtronic has expanded a recall of its MiniMed 600 series insulin pumps to include nearly half a million devices. This is an FDA Class One recall – the most serious type – because the pumps may deliver incorrect insulin doses. The recall was first announced in 2019 for just two models. Medtronic now says it will replace any MiniMed 600 series insulin pump that has a clear retainer ring with one that has the updated black retainer ring at no charge. That's even if there is no damaged and regardless of the warranty status of the pump. There's more to this – including directions on how to check if your pump may be affected and who to call. I'll put all of that here in the FB comments and in the show notes. https://www.usnews.com/news/health-news/articles/2021-10-05/medtronic-expands-recall-to-include-more-than-463-000-insulin-pumps XX Enrollment is under way for the first pediatric trials for Afrezza inhalable insulin. This will involve children ages 4 to 17 living with type 1 or type 2 diabetes. It's called the INHALE-1 phase three trial. They're going to look at changes in A1C after 26 weeks.. and then changes in fasting glucose after another 26 weeks. If you're interested, we've got the link for more info to this study and to learn about enrollment. Afrezza was approved for adults back in 2014. https://clinicaltrials.gov/ct2/show/NCT04974528. https://investors.mannkindcorp.com/news-releases/news-release-details/mannkind-announces-first-patient-enrolled-inhale-1-study XX Last week we told you about the Glucagon emergency kit recall from Lilly. Reuters is reporting that the kits were made in a factory previously cited for quality-control violations, including several involving the glucagon product. Lilly had received a report of a patient who experienced seizures even after being injected with the drug, a sign that glucagon was not potent enough to work. The company said the product failure might be related to its manufacturing process, without elaborating. A spokesperson declined to say whether Lilly has received other reports of adverse events related to the Glucagon kits. Separately, Lilly is facing a federal criminal investigation into alleged manufacturing irregularities involving another of its U.S. factories in New Jersey. Reuters is following both stories and of course, we will too. https://www.reuters.com/business/healthcare-pharmaceuticals/exclusive-eli-lillys-recalled-emergency-diabetes-drug-came-plant-cited-by-fda-2021-10-04/ XX Big new report on adults with type 1.. called a forgotten population in this write up. The consensus statement covers diagnosis, goals and targets, schedule of care, self-management education and lifestyle, glucose monitoring, insulin therapy, hypoglycemia, psychosocial care and much more. This is a joint statement from the American Diabetes Association and the European Association for the Study of Diabetes Their last consensus report on type 2 diabetes has been "highly influential," these researchers say.. so they recognize the need to develop a comparable report specifically addressing type 1 diabetes in adults. https://www.medscape.com/viewarticle/960158 XX Adults with Type 2 diabetes on statin therapy may see worsening diabetes symptoms. Important caution: the researchers are quick to say that association does not prove causation, no patient should just stop taking their statins based on this study. These are cholesterol lowering medications with brand names like Lipitor and Crestor.. Statin users had a 37% higher risk for diabetes progression, including extremely high blood sugar levels and elevated rates of disease complications. Nearly half of adults with Type 2 diabetes also have high cholesterol and many of them stop taking statins due to this kind of thing. But that may increase the risk for heart attack or stroke. So definitely talk to your doctor before making any changes. https://www.upi.com/Health_News/2021/10/04/statins-diabetes-progression-risk-study/7261633358483/ XX More to come, But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—the new Entrée bowls are great. They have a chicken burrito, a cauliflower mash and braised beef bowl.. the lemon chicken I've told you about and more! They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… -- DreaMed Diabetes gets FDA approval to expand their platform to people with type 1 and type 2 diabetes. Called Advisor Pro, it's the first decision support system that has been cleared to assist healthcare providers in the management of diabetes patients who use insulin as well as CGMs and meters. We spoke to these folks on the podcast last year. They say Advisor Pro aims to solve the massive worldwide shortage of endocrinologists by empowering primary care clinicians, to be able to provide expert level endocrinological care to diabetes patients. The company's founder says the next step is to develop and extend the technology to cover all injectable or oral medications for diabetes. https://www.businesswire.com/news/home/20211006005640/en/ https://diabetes-connections.com/we-treat-the-data-lifting-the-burden-of-diabetes-with-dreamed/ -- Really interesting look at who's adopting newer diabetes technology. This is from an article over at Dia Tribe where they feature a research study showing that roughly 55% of people with diabetes had positive, open attitudes toward technology. However, another 20% had negative attitudes and did not trust technology, while the remaining 25% either did not want additional data, did not want to wear a device on their body or had a very high level of diabetes distress related to using devices. When they focused on people with type 2.. it turns out the uptake of technology was actually lowest among people aged 18 to 25. This group also had the highest levels of diabetes distress and the highest A1C levels, and many reported that they did not like having a device on their body as their main reason for refusing the devices. Others reported the frequency of alerts and alarms, feeling physically uncomfortable, and cost as reasons for rejecting devices. These researchers say providers need to find ways to avoid making patients feel guilty about their choice of technology as well as watching out for negative judgements for those who use devices but don't achieve near perfect glucose control. https://diatribe.org/new-tech-and-psychological-toll-diabetes-management Please join me wherever you get podcasts for our next episode - The episode out right now is all about the film Pay or Die an upcoming documentary about insulin access and affordability. – That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

    Pay or Die: A new documentary about the price of insulin

    Play Episode Listen Later Oct 5, 2021 33:30

    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

    In the News... Insulin price drop, COVID T1D study, a through-the-skin CGM and more!

    Play Episode Listen Later Oct 1, 2021 8:07

    In the News.. this week: Lilly drops the price of some insulins, this T1D group most likely to be hospitalized if infected with COVID, insulin pumps reduce risk of retinopathy, Novo Nordisk pays investors to settle earnings claims, another through-the-skin glucose monitor and more! Join us Live on Facebook each Wednesday at 4:30pm EDT! 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  Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule. XX In the News is brought to you by Real Good Foods! Find their Entrée Bowls and all of their great products in your local grocery store, Target or Costco. XX Our top story – Lilly announces a big price change on some insulins. Starting this January, the cash price of Insulin Lispro goes down 40%. Lispro is identical to Humalog – the price on that one isn't changing. Lilly says one in three prescriptions for their mealtime insulin is for Insulin Lispro. I asked Lilly why now and what about Humalog? I'll put my Q&A in the show notes – you'll be able to read them at diabetes dash connections dot com and in the Facebook group.. their answers were vague – although one interesting point.. they claim these programs have lowered the monthly out of pocket cost of a prescription for Lilly insulin to 28 dollars.. a decrease of 27% over the past four years. The bottom line here is that you still have to do the work… your pharmacist can substitute lispro for humalog – or the other way around – however the prescription is written.. make sure you ask them to check which is cheaper either with your insurance, with a coupon or with the cash price. It's a lot of work, but with all of these options, you want to figure out what's best for you. https://beyondtype1.org/lower-list-price-lilly-insulin-lispro/ XX Adults over 40 with type 1 are 4 times more likely to be hospitalized with COVID 19 than younger people. New study in the Journal of Clinical Endocrinology & Metabolism. This study looked at thousands of people with type 1 from April 2020 to March of 2021 – so it's worth noting that the recent Delta wave isn't included here. Hospitalized here means inpatient or ICU not emergency room. This is where it gets really interesting – they adjusted for sex, A1C, race and ethnicity, insurance type and comorbidities – it was being over 40 that still increased the odds. That's not to say A1C didn't matter.. The likelihood for hospitalization was higher for all ages with a higher A1C.  Also interesting.. there was no significant difference for adverse outcomes between the age groups. They grouped together DKA, severe hypoglycemia and death as the adverse outcomes here.. https://www.healio.com/news/endocrinology/20210928/older-adults-with-type-1-diabetes-more-likely-to-be-hospitalized-for-covid19-than-youths XX Using an insulin pump may decrease the risk of diabetic retinopathy in younger people with type 1. These researchers looked at almost 2000 patients under the age of 21 and found - after adjusting for race and ethnicity, insurance status, diabetes duration, and A1C - patients with pumps had a 57% decreased risk for retinopathy. The thinking here is that it's about less variability in blood glucose. However, there were disparities in access to pumps, with pump users more likely to be white and have private or commercial insurance. https://www.medscape.com/viewarticle/959758   XX Very early on but potentially big news out of China… this is the DREAM study a phase three clinical trial of a medication called dorzagliatin (DOOR-zuh-GLY-uh-tin)– this is for people with type 2. While it was a small study it has big results.. after a year, 65% of the 69 patients were in remission – that generally means A1Cs under 6.5 with no glucose lowering medication – although the exact definition of remission was not given here. These findings were presented at a recent BioMed Conference in China. https://www.biospace.com/article/hua-medicine-may-be-sending-type-2-diabetes-into-remission-/ XX XX Novo Nordisk shareholders say pants on fire to the insulin maker and get a $100 million dollar settlement. What happened here? Novo allegedly told investors not to worry about insulin pricing pressures from lawmakers and patient groups  - that they'd still make plenty of money. But the investors disagreed – saying other insulin makers were warning their investors that profits could fall. This lawsuit has nothing to do with any benefit to patients – it was all about investors who were actually asking for 1.7 billion dollars. Novo agreed to the smaller deal saying they just wanted to avoid the burden of litigation, no admission of wrong doing. https://www.fiercepharma.com/pharma/novo-nordisk-agrees-to-100m-settlement-investors-who-claimed-company-misled-them-about-its XX This is from last week but want to make sure you've seen a voluntary glucagon recall. Lilly is recalling a specific lot from their red box emergency kit. It's lot D239382D so please check. The problem here is that someone reported the vial of glucagon was in liquid form instead of powder – which can mean the glucagon isn't going to work well in an emergency. If you got this lot – bring it back to the pharmacy or call Lilly. Info in the link and show notes. https://www.fda.gov/safety/recalls-market-withdrawals-safety-alerts/eli-lilly-and-company-issues-voluntary-nationwide-recall-one-lot-glucagonr-emergency-kit-due-loss XX You might have seen the headline on this one: if you can't fit into the jeans you wore at age 21 you're at risk of developing type 2 diabetes. I dug a little deeper on this.. very small study. First. These people weren't even overweight. They did have type 2 and as part of the study managed to lose fat and the researchers said their diabetes was put into remission. They all followed a weight loss program of a low calorie liquid diet for two weeks – 800 calories a day! They did this three times  until they lost 10 to 15 percent of their body fat. The researchers say this “demonstrate very clearly that diabetes is not caused by obesity but by being too heavy for your own body”. What does that mean?! What does it have to do with the headline about jeans at age 21? And what happens to these poor people who were slurping 800 calories a day and are now just back to their normal lives? I'm hoping I missed something big on this one..   https://www.theguardian.com/society/2021/sep/27/people-who-cant-fit-into-jeans-they-wore-aged-21-risk-developing-diabetes XX More to come, But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—the new Entrée bowls are great. They have a chicken burrito, a cauliflower mash and braised beef bowl.. the lemon chicken I've told you about and more! They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… -- We've got another through the skin glucose monitor in the news. Know Labs debuted it's Know-U device which is very small, fits in your pocket and is powered by what they call Bio R-Fid technology. It emits radio waves to measure specific molecular signatures in the blood through the skin. They've also got UBand.. which is a bracelet that does the same thing. Do they work? According to a 2018 study 97% of the UBand's readings were within 15% of the values calculated by the Abbot Libre. But that wasn't a clinical trial – those are starting this year.   https://www.fiercebiotech.com/medtech/know-labs-unveils-pocket-sized-glucose-monitor-swaps-fingersticks-for-radiofrequency -- And finally, maybe the most glamorous photo featuring an insulin pump.. model Lila Moss – daughter of supermodel Kate Moss – walked the Fendi Versace runway at Milan's fashion week with her Omnipod very visible. Lila Moss has type 1 and while they family has never really mentioned it, she's been photographed with her pod on before. Lots of write ups about this – great to see the representation -- Please join me wherever you get podcasts for our next episode - The episode out right now is with Marjorie's Fund – helping people survive diabetes in countries with few resources.. and next week we're featuring the folks behind the upcoming Pay or Die film about insulin access.. That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

    Access, Education, and Economic Empowerment - The Worldwide Mission of Marjorie's Fund

    Play Episode Listen Later Sep 28, 2021 35:34

    We have some big problems in the United States in terms of access to and affordability of insulin. But when you look around the world, there are still many other countries with bigger barriers for people with diabetes. This week, we're talking to a group trying to make a difference in some of the places that need it most. As you'll hear, Marjorie's Fund was started to honor the memory of a woman in Uganda who died from type 1 diabetes at the age of 29. Dr. Jason Baker is an endocrinologist who lives with T1D. He explains why he was in Uganda and what happened to make him take the leap to start Marjorie's Fund. You'll also hear from Sandy Narayanan, co-founder who lives with type 2. 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 coming soon!

    In the News... Implantable insulin pump, Doctors (not parents) miss T1D symptoms, Dexcom shelf-life extension and more!

    Play Episode Listen Later Sep 24, 2021 6:41

    It's "In the News..." the only diabetes newscast! Top stories this week: Medtronic moves on implantable insulin pump, study: doctors - but not parents - are missing symptoms of T1D in kids, Dexcom "shelf-life extension" explained, news about whether COVID is causing a surge of diabetes in children and what happened with the Apple watch BG monitoring news? -- Join us each Wednesday at 4:30pm EDT! 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 Transcription Below:    Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule. XX In the News is brought to you by Real Good Foods! Find their Entrée Bowls and all of their great products in your local grocery store, Target or Costco. XX Our top story.. What helps people with diabetes gain better glucose control? Expansion of Medicaid. As part of the 2010 Affordable Care Act or Obamacare, U.S. states were given the option of expanding Medicaid coverage to more people as a means of reducing the number of people without health insurance. As of today, only 12 states have not taken advantage. A new study finds that blood pressure and glucose control measures have improved in states that have. The researchers behind the study say it may take a while to show up but that, over the longer run, expanding Medicaid eligibility may improve key chronic disease health outcomes for low-income, marginalized populations. https://www.medicalnewstoday.com/articles/medicaid-expansion-improves-hypertension-and-diabetes-control XX Medtronic takes over the intellectual property rights to an implanted infusion pump. This is technology developed by the Alfred E Mann foundation. 25 years ago, there was a lot of buzz about implantable insulin pumps, but it hasn't panned out. The tech is just what it sounds like – a small insulin pump that goes under the skin and holds enough insulin for a few months. Medtronic had one on the market but pulled it almost 15 years ago. One of the drawbacks is that you have to go to the doctor every time you need to fil the pump and there's other upkeep – but the upside is said to be better control and a lot less thinking about diabetes. Interesting to follow this one. https://www.fiercebiotech.com/medtech/medtronic-buys-implanted-infusion-pump-tech-to-develop-new-type-1-diabetes-treatment XX A story familiar to way too many parents.. symptoms of type 1 diabetes are not always immediately recognized by primary care providers. This was a study of about 240 kids under 18.. published in Pediatric Diabetes These researchers found that 39% of parents had suspicions of new-onset diabetes before they brought their child in for care. Of those, the majority of parents first brought their child to the doctor with symptoms.. and then ended up bringing the same child to the emergency room within the next four weeks. This was a Swedish study, but research shows especially during COVID, diagnosis during DKA is increasing in children in many countries, showing the greater need for better education all around. https://www.usnews.com/news/health-news/articles/2021-09-21/doctors-often-miss-signs-of-type-1-diabetes-in-kids XX We've heard a lot during this pandemic about an increase in new diabetes diagnoses. A new report from Mississippi, where providers are reporting a -quote – massive increase. One pediatric endocrinologist is says they've seen up to a 40% increase this year, compared to 2019. That's both type 1 and type 2. So what's going on? Lots of theories including indirect effects of quarantines, closures, and unemployment. It might sound odd to some, but severe emotional stress is thought to be a trigger for diabetes, especially in type 1. Additional studies show that COVID targets the insulin making pancreatic beta cells. A full understanding may be some time away, but these endos say the surge is real. XX Interesting listener question about Dexom sensors.. thanks for sending in this photo – seems that some customers are getting these G6 inserters – brand new in the original packaging – with a label that says “this product meets shelf life extension requirements.” I reached out to Dexcom and they told me: the stickers are legit and there are updated expirations dates. I've asked for a bit more information as to why they'd do something like this and if it means that all G6 sensors could have extended shelf life. They responded that they aren't going through all the sensors, so only the ones labeled can be considered extended.. no answer as to why now or to which part of the sensor or inserter actually expires. I'll follow up next time we talk for the podcast, but if you get one of these labeled sensors – the company says it's legit and safe. XX More to come, But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—the new Entrée bowls are great. They have a chicken burrito, a cauliflower mash and braised beef bowl.. the lemon chicken I've told you about and more! They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… Big news for a great children's book. JDRF has put Shia Learns About Insulin into the Bag of Hope. We had the author on the show last year... I'll link that episode up so you can hear the whole story. Shaina (SHAY-ahn-uh) Hatchell is a Registered Nurse, Certified Diabetes Care and Education Specialist, and Nurse Manager at the Howard University Diabetes Treatment Center. The story was inspired by her brother, who lives with T1D. The JDRF Bag of Hope is given to newly diagnosed children age 11 and under. Frankly, it's pretty hard to get new products in there – it's nice to see some more diverse representation. https://www.jdrf.org/press-releases/jdrf-announces-the-addition-of-shia-learns-about-insulin-book-into-the-bag-of-hope/ -- Last bit of news is note worthy for what didn't happen. Big apple news conference this month with absolutely no mention of blood glucose monitoring. You'll recall there was a ton of speculation about this all year long.. with many tech websites breathlessly reporting this was going to be happen. Look – I do think it will.. but there is really no hard evidence that anyone has come close to cracking this. Non invasive remotely accurate glucose monitoring is really hard. And, as I've said all along, we'll know it's for real when we see some clinical trials. -- Please join me wherever you get podcasts for our next episode - The episode out right now is with American Idol contestant turned actor Kevin Covais – he's in a new Netflix show out this month and he spent some time this summer mentoring teens. Fun guy with great behind the scenes Idol stories, too. That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

    From American Idol to Actor and Advocate: Meet Kevin Covais

    Play Episode Listen Later Sep 21, 2021 41:50


    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


    In the News.. BG trends during COVID lockdowns, diabetes sales fraud, A Dexcom G5 message, and more!

    Play Episode Listen Later Sep 17, 2021 6:35

    It's In the News... the top diabetes stories of the past seven days! This week, what did lockdown mean for BG trends, Provention Bio keeps fighting for Teplizumab, the FTC shuts down diabetes schlockmeisters and if you're still using the Dexcom G5 - you need to hear this... Join Stacey live on Facebook each Wednesday at 4:30pm EDT to watch live. 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 and links below Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule. XX In the News is brought to you by Real Good Foods! Find their Entrée Bowls and all of their great products in your local grocery store, Target or Costco. XX Our top story.. What did COVID lockdown mean for blood sugar trends? A new study says when they had to stay at home, people with type 1 significantly improved while the opposite happened for those with type 2. You should know these studies all come from European countries with pretty strict lockdowns and they're an aggregate – a look at a bunch of previously conducted studies. With type 1, time in range improved significantly in 83% of the studies looked at here.. with type 2, almost half of the studies showed a clear decrease in blood sugar control, with higher A1Cs. So what happened? There's a lot of speculation but these researchers suggest less exercise and more snacking and more stress is to blame for the type 2 numbers..  although in my opinion the same could be said for all people with diabetes. They also suppose that the lockdown gave parents more time to look after kids with type 1 and gave young adults a more predictable routine. I hope another study is done on this in the US where, frankly – access to insulin & health care providers may have become more of an issue during the pandemic https://www.news-medical.net/news/20210913/COVID-19-lockdown-linked-to-improved-glycemic-control-in-type-1-diabetes.aspx XX Bit of an update - Provention Bio moving forward to answer the FDA's questions and hopefully resubmit. This is for Teplizumab the first drug shown to prevent type 1 diabetes for – so far- up to three years.. although the FDA turned it down in July. Provention says they continue to collect data and are moving to set up what's called a Formal Type A meeting to submit that new information. The company's CEO says they believe they're making significant progress to address the observations cited by the FDA and continue to work with urgency.   https://finance.yahoo.com/news/provention-bio-provides-potential-timing-113000253.html?soc_src=social-sh&soc_trk=tw&tsrc=twtr   XX Bunch of schlock-meisters got called out last week by the US FDA and FTC – that's the Federal Trade Commission. 10 companies got warning letters alleging they were selling illegal dietary supplements to cure or prevent diabetes. Regulators wrote the products cited in the warning letters are considered unapproved new drugs – they include things like turmeric, bitter melon, ginkgo biloba and more.. The report cites the increasing cost of insulin and other diabetes medications as a reason why people are turning to alternatives, even if they aren't proven.. Please.. be careful out there. https://www.naturalproductsinsider.com/supplements/regulators-target-diabetes-supplements-recent-warnings-about-claims   Quick additional FTC note – they held a virtual open meeting today. Two people from the diabetes community spoke about rising insulin prices. If you'd like to learn more I'll link up the information. https://www.ftc.gov/news-events/press-releases/2021/09/ftc-announces-tentative-agenda-september-15-open-commission XX We don't talk a lot about shots – multiple daily injections – but here's some good news about the basics. New study shows rotating sites and using smaller needles really do help. You've likely heard of LY-po-hy-PER-tro-fee.. it's when lumps of fat or scar tissue form under your skin. These Belgian researchers did a six month study where they provided smaller pen needles and did a lot of education, including an online platform where they taught proper injection techniques, including not re-using needles. They reduced what they called unexplained high blood glucose significantly and glucose variability decreased as well. A1Cs stayed about the same. https://onlinelibrary.wiley.com/doi/10.1111/dme.14672 XX No surprise but still disappointing –  insurance is what's dictating whether young children are more likely to use a CGM regularly. This was published in Diabetes Technology & Therapeutics. Those on public or government insurance often face more obstacles. This was a study of children ages 1-6 years, within two months of diagnosis. 82-percent used a CGM at least once during the study period.. but they divided everyone into 4 groups – always used CGM, stable use, inconsistent use or never used. Families with private insurance were more likely to be in the always group or the stable group than those with public insurance. And.. The “always” group had an A1C that was 1.3% lower than the “never” group https://www.healio.com/news/endocrinology/20210907/private-insurance-determines-cgm-use-by-young-children-with-type-1-diabetes XX More to come, including a Dexcom G5 update! But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—the new Entrée bowls are great. They have a chicken burrito, a cauliflower mash and braised beef bowl.. the lemon chicken I've told you about and more! They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… Heads up if you're still – somehow – using the Dexcom G5. More than a year ago, Dexcom stopped selling the G5 and G4.. but – and thanks to the listeners who brought this to my attention – the G5 app is now sending out a notification.. On October 4th the Dexcom G5 app will no longer be available. As they've shared with us on the podcast many times, they've been transitioning everyone over to the G6 and will soon move on to the G7. No timeline on that btw I know you're going to ask. But as far as we know, it hasn't been submitted to the FDA and Dexcom has said it will go for European approval first. -- And finally don't forget to send me your Dear Dr. Banting audio! What would you say to the man credited with the discovery of insulin? All the details and how to send it to me is in the show notes. -- Please join me wherever you get podcasts for our next episode - The episode out right now is all about the new Walmart Insulin.. will it save you money? That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.  

    The New Walmart Insulin: Everything You Need to Know

    Play Episode Listen Later Sep 14, 2021 30:16

    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

    In the News... new info on COVID and diabetes, bioartificial pancreas research, a T1D superhero movie and more!

    Play Episode Listen Later Sep 10, 2021 6:51

    It's "In the News..." the top diabetes headlines of the past seven days. This week: Why is COVID more dangerous with diabetes? A new study says technology (like pumps and CGMs) doesn't help "Diabetes Distress," more screening recommended for "social risk" of type 2, bioartificial pancreas research and there's a T1D Superhero movie in the works! -- Links and transcript below 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   Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule. XX In the News is brought to you by Real Good Foods! Find their Entrée Bowls and all of their great products in your local grocery store, Target or Costco. XX Our top story this week.. type 2 diabetes has been identified for a while now as one of the main risk factors for severe COVID-19. New research from the University of Michigan says the culprit appears to be an enzyme called SETDB2, which is part of the reason why wounds don't heal well in some people with diabetes. Put very simply, as levels of this enzyme went down, inflammation during COVID went up. There is already a protein – Interferon – that is known to increase levels of this enzyme.. These researchers hope their findings will help in clinical trials of interferon or other treatments. They also say it's important to go through a patient's medical history to better target treatment for COVID. https://medicalxpress.com/news/2021-09-people-diabetes-severe-covid-.html XX Interesting study about young adults and what these researchers call Diabetes Distress. The study shows Distress – which they don't really define, but what sounds like depression or burnout or other mental health struggles – is associated with higher A1Cs. Not too much of a surprise, but they also found it doesn't matter if these young adults using insulin pumps or CGMs or just multiple daily injections. This Yale study was done by looking at past surveys of more than 400 people aged 18-29 in NY. They found that while users of insulin pumps and CGMs have overall lower A1Cs, the benefit of device use diminishes when high diabetes distress is present. https://www.healio.com/news/endocrinology/20210908/diabetes-distress-associated-with-higher-hba1c-for-young-adults-regardless-of-device-use XX Certain racial and ethnic minorities develop type 2 diabetes at a younger age than white Americans. That means , current diabetes screening and prevention practices for them may be inadequate and inequitable This Northwestern Medicine study says American adults are diagnosed with type 2 at an average age of 50, but for Black and Mexican American adults it's 4 to 7 years earlier. And more than 25% of that group report a diagnosis before turning 40. Recommended screening time is important not just for better health but because screenings are almost always only covered by insurance when the U.S. Preventive Services Task Force recommends them. If that sounds familiar, that's the group that recently announced new guidelines that lowered the recommended age from 40 to 35 to start screening adults who are overweight or obese for type 2 diabetes. Future research should consider whether even earlier screening is indicated among individuals with exposure to social risks, the study authors said. https://medicalxpress.com/news/2021-09-black-mexican-american-adults-diabetes.html XX Very early on but promising results for what's being called a bio- artificial pancreas. This is a tiny implantable device that holds insulin-secreting cells in a compartment protecting them from the body's autoimmune response. The micro-encapsulation device has the potential to be an autonomous system that would not require constant refilling and replacement of insulin cartridges, according to these researchers. The prototype has two separate chambers — one that collects nutrients from the device's surroundings, and one that houses the protected cells. Lots of work before this one's ready for clinical trials https://interestingengineering.com/a-bioartificial-pancreas-could-substantially-enhance-type-1-diabetes-treatment XX More to come, including news about a T1D superhero movie, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients— I was in Target this week and I saw the new Entrée bowls, I bought the Lemon Chicken and the Lasagna. The Lemon chicken was great! It uses hearts of palm pasta instead of regular noodles which I thought sounded odd but really tasted good. They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… And a Big boost for diabetes camps. Lilly Diabetes will commit nearly $1 million over the next three years in a joint effort with the Helmsley Charitable Trust to the Type 1 Diabetes Camps Initiative. The money is going specifically to non-profit diabetes camping organizations nationwide serving low-income youth living with T1D. and help diabetes camps adapt to the physical requirements of COVID-19 and better serve youth living with T1D via capital improvements. https://www.prnewswire.com/news-releases/lilly-diabetes-joins-the-leona-m-and-harry-b-helmsley-charitable-trust-to-pledge-significant-funding-to-type-1-diabetes-camps-initiative-301368797.html XX A new movie with a superhero who lives with type 1 is coming to theaters next summer. Called “Gum-she: The Type 1 Protector,” it's created by Jermaine Hargrove, diagnosed with type one 15 years ago as an adult. The main character Justice Johnson has diabetes but it's not the cause of her superpower. That comes from the bubble gum she's always chewing and she's able to shoot gum from her palms to help her save the world. The American Diabetes Association is partnering on the film and  promoting it.. one of the big themes is health equity.. There is a great article in diabetes mine all about this, I'll link that up. In it, Hargrove says Bubble gum brings everyone together. Like music: it's everywhere.” I'm excited about this – but I have to say – if this had come out when my kids were little – I would be hiding all of the bubble gum. If you watch the teaser trailer – she is shooting bubble gum everywhere! Using it to create bridges and running around like spider man. So.. it looks really cute but knowing my kids? Again.. I'd have to hide the gum. Watch for the trailer on world diabetes day – nov 14. The full film will be released next summer. https://www.healthline.com/diabetesmine/a-new-diabetes-superhero-movie-you-wont-want-to-miss https://gumshe.com/ XX Please join me wherever you get podcasts for our next episode - The episode out right now is with Ethan Orr – the Colorado high school swimmer removed from his meet because of his the medical tape over his CGM. And send me your Dear Dr. Banting audio! What would you say to the man credited with the discovery of insulin? All the details and how to send it to me is in the show notes. That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.  

    Pulled from a meet for his CGM's tape, a high school swimmer with T1D speaks out

    Play Episode Listen Later Sep 7, 2021 41:40

    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

    In the News... CGM Disqualifies High School Swimmer, Dexcom Smoothing, T2 Remission and more!

    Play Episode Listen Later Sep 3, 2021 7:12

    This week "In the News...." Did wearing a CGM in the water disqualify a high school swimmer? What his family says happened and why they're suing. The ADA wants to start using the word "remission" instead of "reversed" for type 2 diabetes - we'll talk about why. Dexcom says they are no long smoothing data, new migraine and diabetes research and T1Interntioanl is out with their latest survey results about the price and use of insulin. Join us Live on Facebook each Wednesday at 4:30pm EDT! 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   Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, whenever you want. XX In the News is brought to you by Real Good Foods! Find them in your local grocery store, Target or Costco. Real Food You Feel Good About Eating. XX Top story this week.. A discrimination complaint against the Colorado High School Activities Association has been filed with the U.S. Department of Justice. At issue? A student was disqualified for wearing his continuous glucose monitor.  Ethan Orr is a 16-year-old swimmer whose team qualified for the state championships. According to his attorney Orr wore a blood glucose monitor taped to his arm during seven prior matches, including the one in which his team qualified for the state championships, with no issue. But at this meet, the ref said Orr would not be allowed to swim in his last race because of his glucose monitor and tape. They didn't have a sub so the whole team was disqualified. The attorney says, “This is simply blatant discrimination against a kid with a disability, and it led to unnecessary and unfair consequences to him, his teammates, and the school,” According to the lawsuit, Orr is protected under two federal laws – the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973. I've reached out to the local reporter on this story and hope to talk to the family soon XX People with type 2 diabetes should be considered in remission after sustaining normal blood glucose levels for three months or more without medication. That's a new consensus statement from the American Diabetes Association® and several other international groups. They recommend testing every year to determine long term maintenance. The real news here – as I see it – is trying to get people to stop saying “Reversal” or “cure” when it comes to diabetes. The statement here doesn't seem to be about the science, but says the word remission “strikes an appropriate balance” between the diabetes not being active and progressive, but also recognizing improvement may not be permanent. https://www.diabetes.org/newsroom/press-releases/2021/international-experts-outline-diabetes-remission-diagnosis-criteria XX Got lots of comments and questions about some changes noticed on the Dexcom G6 app recently. Turns out, Dexcom has removed what's called data smoothing from its most recent update. As of August 9th they say “The Dexcom G6 app used to smooth all but your current reading on your trend graph. With data smoothing, there can be some differences between the G6 reading you see in real time (the white circle) and the G6 readings you see in the past on your graph (black dots). I'm showing a photo here – I'll post this with the podcast episode for those listening.   To avoid these differences, we removed data smoothing from the Dexcom G6 app in the 1.9 release, but the Follow app and Receiver continue to smooth past CGM data. We will remove smoothing in an upcoming Follow app release to match the G6 app, but we don't plan to remove data smoothing from the Receiver.”   These differences don't affect the real-time glucose data, alarm, or alerts. Honestly, I'm not sure why they're doing this or why they smoothed in the first place.. but we'll follow up and try to find out more XX Not a lot of answers here, but this is interesting.. apparently, people with type 2 diabetes are unlikely to develop migraines and people who get regular migraines are less likely to develop diabetes. To find out why.. scientists are looking at two small proteins that are linked to migraine and drive production of insulin. This team from the University of Tennessee says some of the newer treatments for migraines could increase the risk of diabetes because of the use of these proteins. They want to figure out how to prevent that.   https://www.fiercebiotech.com/research/mouse-study-shows-how-causes-behind-migraine-pain-can-improve-diabetes-treatment XX T1International is out with results of their 2020 global out of pocket cost survey for people with type 1 diabetes. Worldwide, one out of every four respondents reported having under-used their insulin at least once within the last year due to high cost. 63.2% of participants reported disruption of insulin supplies and 25.3% reported an increase of insulin prices related to the COVID-19 pandemic. They've conducted this survey every two years since 2016, adding additional questions each year. This time, the Results were published as a research paper in the Journal of Diabetes Research and Clinical Practice, linked in the show notes. https://www.t1international.com/access-survey/ XX More to come, including news about a rare form of diabetes, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients— I was in Target this week and I saw the new Entrée bowls, I bought the Lemon Chicken and the Lasagna. The Lemon chicken was great! It uses hearts of palm pasta instead of regular noodles which I thought sounded odd but really tasted good. They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… XX This is from the UK but I think it's an important reminder that there are more than 2 types of diabetes. It's new plan to discover and treat mono-genetic diabetes. That's caused by a single gene mutation – although the specific gene affected can differ. The condition occurs in two types, neonatal – which can occur within the first six months of life – and MODY that develops later, often before the age of 25. About 2% of all diabetes cases are thought to be monogenetic… the National Health System in England is forming a new training and treatment program to make sure these patients received the correct treatment sooner. https://www.theguardian.com/society/2021/aug/30/nhs-england-to-train-staff-in-all-trusts-to-spot-rare-type-of-diabetes XX And finally, thousands of people in the path of Hurricane Ida are still without power and possibly need help getting their medication. I want to make you aware of the Diabetes Disaster Response Coalition (DDRC). This is a coalition of lots of diabetes groups – if you need immediate help or want to plan for an emergency, they have the resources. Physicians and health care providers can call 1-314-INSULIN to report diabetes supply shortages and request support.  People with diabetes and their loved ones can call 1-800-DIABETES (800.342.2383) is available to support people with diabetes and their loved ones for more information. https://diabetesdisasterresponse.org XX Please join me wherever you get podcasts for our next episode -Tuesday –  we're talking to the folks from Walmart about their deal with Novo to sell their own brand of Novolog Insulin.. The episode out right now is with MannKind, makers of Afrezza inhalable insulin. That's In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.      

    All About Afrezza Inhalable Insulin with CEO Mike Castagna

    Play Episode Listen Later Aug 31, 2021 38:33

    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

    In the News.. type 2 youth study, mini glucagon made easier, CGM via radio waves and more!

    Play Episode Listen Later Aug 27, 2021 6:41

    It's "In the News..." the only LIVE diabetes newscast! -- Top stories this week: T2D screening guidelines to change New Gvoke Kit approved Gestational Diabetes cases up in younger women Are magnets & radio waves coming to T1D care? Update on #DiversityInDiabetes -- Links and sources in the transcript 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:   Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I'm going to link up my sources in the Facebook comments – where we are live on Wednesday August 25th 2021 – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, whenever you want. XX In the News is brought to you by Real Good Foods! Find them in your local grocery store, Target or Costco. Real Food You Feel Good About Eating. XX Top story this week.. the number of young people with type 2 nearly doubled in the United States from 2001 to 2017. These researchers found significant increases in all types of diabetes among both sexes and across racial and ethnic groups. Type 1 diabetes remains more common among white youth. The highest rates of type 2 diabetes were seen in youth who are Black or Native American. It's interesting that these CDC and NIH researchers say they don't know the cause of the huge increase in type 2. They talk about rising obesity, but wonder what's behind that? They also wonder if it's because of increased screenings, environment or something else. https://www.reuters.com/business/healthcare-pharmaceuticals/diabetes-surges-among-american-youth-study-shows-2021-08-24/ XX Big change recommended in screening for adults with type 2. The U.S. Preventive Services Task Force now recommends screening for people who are overweight starting at age 35… five years earlier than recommended right now. That would include 40% of the US adult population. This task force recommends screenings that insurance companies must completely cover, without out of pocket costs to the insured, under the Affordable Care Act. XX FDA approval for Gvoke Kit to treat severe hypoglycemia. Xeris pharmaceuticals already provides Gvoke glucagon as an autoinjector and a prefilled syringe.. this Kit is for patients who prefer to draw up their own doses of glucagon using a vial and syringe. You don't have to mix anything, it's still a ready-to-use liquid glucagon. Could be helpful to those who prefer mini-glucagon doses – which are NOT FDA approved – but are sometimes used during illness. Note that's my comment, Xeris and the FDA is not talking about mini glucagon dosing at all.   https://www.fiercepharma.com/drug-delivery/xeris-a-rival-to-lilly-and-novo-gets-fda-nod-for-glucagon-kit   XX Growing numbers of pregnant women are developing gestational diabetes. Between 2011 and 2019, rates of gestational diabetes in the United States jumped 30%, according to a large nationwide study of first-time mothers. The cause? Not clear. Every age group saw an increase – from 15 to 44 – so it's not just moms getting older, which is happening. These researchers want to look at non -traditional risk factors like stress. This was a huge study – 13 million moms in the US. https://www.upi.com/Health_News/2021/08/18/diabetes-pregnancy/7401629306285/ XX In the – no thank you – department – researchers say they've got an implanted pump you'd refill just by swallowing a capsule. The catch? First, they have to implant the pump – which is described as the size of flip phone - along the abdominal wall, interfaced with the small intestine.   That refill capsule is magnetic, so the implant draws the capsule toward it. It then punches the capsule with a retractable needle and pumps the insulin into its reservoir. The needle must also punch through a thin layer of intestinal tissue to reach the capsule. These Italian developers testing it all out in pigs – they say it controlled blood glucose successfully… for several hours. https://spectrum.ieee.org/implantable-medical-devices https://www.newscientist.com/article/2287225-diabetes-implant-is-restocked-by-swallowing-magnetic-insulin-capsules/ XX Another maybe it'll work item… Israeli startup Hagar has something called G-Wave technology that measures blood sugar levels using noninvasive radio waves. The prototype puts the tech into a ceramic bracelet. Uses Bluetooth to transmit readings to an a mobile app with display and alert functions. A proof-of-concept study found the company's radio frequency technology was able to continuously measure glucose levels with at least 90% accuracy, compared to the estimated 70% rate for traditional continuous glucose monitors. They claim that's because it measures glucose in real time. Hagar now plans to launch clinical trials to pursue FDA approval https://www.fiercebiotech.com/medtech/hagar-brews-up-11m-after-a-serendipitous-spill-led-to-creation-new-cgm-tech XX More to come, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients— I was in Target this week and I saw the new Entrée bowls, I bought the Lemon Chicken and the Lasagna. The Lemon chicken was great! It uses hearts of palm pasta instead of regular noodles which I thought sounded odd but really tasted good. They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… XX Big grant goes to Scripps Whittier Diabetes Institute to study the use of CGMs in hospitalized patients with type 2. This is a $3.1 million dollar grant from The National Institutes of Health. It's to build on research going on now – during the COVID-19 pandemic. CGM devices have been approved for outpatient use since 1999, but their use in the hospital setting remains limited to research efforts and the special conditions allowed during the pandemic. https://timesofsandiego.com/tech/2021/08/10/scripps-whittier-diabetes-institute-gets-3-1m-for-glucose-device-study/-- XX Congrats to Diversity in Diabetes for their newly minted 501c3 status. The group was founded last summer and is dedicated to creating awareness and providing solutions to end health disparities and the lack of representation in the diabetes space. Their big event – People of Color Living with Diabetes Virtual Summit kicks off Sept 16 – more info and how to register in the show notes. XX Please join me wherever you get podcasts for our next episode -Tuesday –  we're talking to the folks from MannKind, makers of Afrezza inhalable insulin. You had a lot of questions for them.. looking forward to that episode! The episode out right now is with Kyle Banks – a Broadway performer diagnosed with type 1 while acting in the Lion King. That's In the News for this week.. if you like it, please share it! If you're watching this replay on YouTube please subscribe, if you're listening via the audio podcast please follow. Whatever it's called – I appreciate you being here. Thanks for joining me!  

    "It's Been Like a Dream Come True" Kyle R. Banks, Broadway Performer with T1D

    Play Episode Listen Later Aug 24, 2021 47:00

    Kyle Banks is a Broadway performer – singer, dancer, actor – he was diagnosed with type 1  while in a production of the Lion King and had to figure out – pretty much on his own – how to  manage on stage. Kyle explains how he learned what he needed to do to perform at his best and shares stories about his time on stage with T1D. Now Kyle has started a foundation to help get diabetes technology into the hands of more people who need it. Learn more about KylerCares Plus, some feedback about our last episode.. and a little bit about back to school. Visit our YouTube channel & subscribe! 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 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, Kyle Banks is a Broadway performer, singer dancer actor who's diagnosed with type one while in a production of The Lion King and had to figure out pretty much zone how to manage on stage,   Kyle Banks  0:41 I would have to go into work with my glucose hovering around 33 50. And by either intermission or the end of the show, my glucose would crash and I would experience these crazy hypoglycemic episodes. And it was really scary for a while.   Stacey Simms  0:58 He's come a long way, Kyle explains how he learned what he needed to do to perform at his best. And now Kyle has started a foundation to help get diabetes technology into the hands of more people who need it. Plus, I got some feedback from you about our last episode. I'll share that and a little bit about back to school. 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. so much great feedback from our last episode where I interviewed my son Benny diagnosed before he was two now he's 16. And he went away for a month this summer to Israel without us with a non-diabetes camp program. So if you've listened, and you send me feedback, I really appreciate it. As I shared during that episode, I was nervous because we are far from perfect. There was funny bits too. I'll share a few of those after the interview. But guys, really, thank you so much. It is amazing to have that kind of support. I really appreciate you. I met Kyle banks at friends for life this summer lucky enough to travel to that in person conference, Kyle gave a welcome speech to new families that were there for the first time. And I knew I had to talk to him. But I heard from a bunch of families who came up to me later, instead of you that interview, Kyle, you know what a great voice. And boy does he have a great voice and what a terrific story. He was diagnosed with type one, nearly six years ago in November of 2015. And as you'll hear the story he was performing, he had made his career on Broadway. And if To me, it just seems like performing in that kind of venue on with that kind of energy you need to put in. It's like being a professional athlete. So I was very interested to talk to him. And I was really surprised, and you may be too as you listen, to hear how he started off with truly very little guidance. Of course, he has come a long way. And he shares how he did it, where he turned for advice, what he's using now. And he also talks about his foundation, and that is Kyler cares. We're going to talk about the benefit concert that helped that foundation from Broadway with love. It's called I'll link that up at Diabetes connections.com and you could watch really the incredible performances very entertaining. I am gonna play a clip of Kyle singing from that in just a moment and then we're gonna go right into the interview. But first Diabetes Connections is brought to you by Gvoke Hypopen, 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 they can be different for everybody. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen it's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed 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.com slash risk   (Kyle sings “Summer Time”)   Stacey Simms  5:04 Kyle, thank you so much for joining me. I'm really excited to talk to you. Your story is so unique. Thanks for coming on the show.   Kyle Banks  5:12 Thanks for having me. I'm excited to be a part of the show for sure.   Stacey Simms  5:15 That's great. We have so much to talk about. Let me just start if I could, at the beginning, your diagnosis story happened. While you were you were living your dream, right you were performing on on Broadway, you were touring, tell me about when you were diagnosed with diabetes.   Kyle Banks  5:32 Well, I was diagnosed in November of 2015. And I'm an actor, vocalist. And so I usually between like the Broadway cast and the touring company of The Lion King, and I was on tour at the time, and we were touring like Canada and California. And I just begin feeling having these crazy symptoms, like exhaustion and constant the need the urge to constantly urinate in, I would really scared me to death was the fact that I lost 30 pounds over the course of like three weeks. And so that was the trigger that made me go to the doctor to see what was going on with me. And that's when I was told that spective that I was diabetic based on my glucose test that that yet administered in the urgent care office, unfortunately, was on steroids at the time. So the physician that was treating me suspected that maybe steroid induced type two diabetes Oh, wow. So he prescribed, prescribed Metformin for me and told me, he suggested I go to the emergency room, but my response was, but have showed a knife so as possible, like what can we do to get through this. So I picked up my prescription and Metformin and went to the show to the theater, still feeling awful. And over the course of the next three weeks, of course, the Metformin did absolutely nothing to help with the symptoms that I was experiencing. And that landed me in the hospital for three days. And that's when I was properly diagnosed with Type One Diabetes. But still, up until being hospitalized, I was working and doing the show, which was looking back on it, which was really crazy, because it shows the intense at high intensity shows a lot of a lot of energy, most of which I did not have   Stacey Simms  7:40 let me just jump in. Because we're going to talk about performing on Broadway and what that does to your body in the energy you need. The Lion King, which we've been fortunate enough to see is nonstop What was it like during that time? Do you can you share I mean, I can't even imagine you must have slept all day, and just performed the best you could have been gone right back to bed.   Kyle Banks  8:01 Yeah, that was my life. Literally in bed all day, wow. Up until the time I would go to work, strike myself into the theater. And usually we're running around during the entire show, just acting. Crazy. You know, the cast is so much the show so much fun to be a part of being in the cast. And then the Quraan camaraderie backstage during the show, the energy is always high and festive. And so of course that's participated in none of that when I wasn't on stage, I was like in my dressing room trying to just replenish any amount of strength that I could or sitting in my station where we get stressed. While the show was happening, it was definitely a huge struggle pushing through just that time. Even after my diagnosis, it took a while for my energy to return. Because my glucose levels was so all over the place. When I was diagnosed one of the crate I you shared with me a bit about your son's experience and the fact that he had amazing doctors that he had access to the same thing with me. But you know, my doctors were not able to tell me once they prescribed insulin for me and showed me how to incorporate that into like the management of diabetes, that they did not share with me the struggles that I would have taken insulin and being so active. That was something that I had to figure out on my own. So   Stacey Simms  9:36 to give you a prescription for insulin, I assume they put you on shots and send you back out to perform it sounds like with very little instruction of, you know, exercise is going to bring you down and eating is going to kind of level you out or I don't even know. So when you got back to your first weeks or months of performances. Do you mind sharing a little of the trial and error I can't imagine as you've already said it, it wasn't a smooth transition back.   Kyle Banks  10:03 Oh, God, no, you know, it's crazy because I actually went to New Orleans to travel to New Orleans to visit my mom's doctor. And she told me to go to the emergency room. And that's when I was hospitalized for three days. So then once I was released, I flew to Denver where the show and jumped right back into the show with now my new regimen for diabetes management, which included finger pricks, which I would do like sometimes 12 or 12 finger prints during the show. And this insulin regimen, that immediately after the first show, I remember my glucose crashed to like the low 20s. And this became a pretty consistent situation where I would have to go into work with my glucose hovering around 303 50. by either intermission or the end of the show, my glucose would crash and I would experienced these crazy hypoglycemic episodes. And it was really scary for a while and this went on for months. And I knew that I just could not continue in this route, because I was reading that, you know, the fluctuations really dangerous, and not only could you know, pass out and have a seizure, if one's glucose goes too low, but you know, could also bring about complications as well. So I knew I had to figure out a better system for my lifestyle, and this new diagnosis that I was now living with. So after about nine months after, actually a full year after my diagnosis, the show just happened to travel to New Orleans. And we were there for a month at the end that I decided to take some time off from work to figure out how to better care for myself and to figure out if I would even be able to continue on performing at this level, and just really figure out a plan for my career.   Stacey Simms  12:05 Well, we know how the story ends that you are still performing and you can. So what made the difference? How did you figure it out?   Right back to Kyle answering that question. But first, Diabetes Connections is brought to you by Dario. And one of the things that makes diabetes management difficult for us that really annoys me and Benny, it isn't actually the big picture stuff. It's all those little tasks that add up. I mean, 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 Daario diabetes success plan offers all of that and more No more waiting in line at the pharmacy no more searching online for answers number 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 Kyle talking about how he figured out how to thrive on stage and avoid those huge lows.   Kyle Banks  13:09 Just having that time to the Lion King can be all consuming when you're doing the show between rehearsals and the actual show and the adrenaline that comes in being getting prepared for it. And once once the curtain comes down, so it doesn't really leave much time for other activities. But having the time off, I was able to just really do a lot of research digging online and social media. I discovered beyond type one and children with diabetes. And since a lot of various resources that could different podcasts, such as you or I listened to a lot of shows which people just talking about how they care for themselves. And this is such a varied cast of people talking about their experiences, athletes, teachers and a varied cast. So I was able to really just dig in and hear what other people were doing and take certain things that I could apply to to my situation and really helped me by when I went back to work. I now have a plan of action, I could test it out and discovered that it actually worked. I could go into work with my glucose hovering around 120. I make sure I had lots of snacks with me and a small meal that I would eat without insulin during intermission, and then another small meal after the show without insulin. And I was so shocked that I was able to I didn't experience the crashes anymore, and I'm able to just maintain my level of activity in a safe way and I'm just so thrilled that this information was available to me. I just had to go a little digging to find it.   Stacey Simms  15:03 So yeah, I mean, it sounds like if I'm hearing you correctly, that you went outside the traditional medical sphere, right, it sounds like you got all of your information from the community,   Kyle Banks  15:14 pretty much, pretty much, I knew that my situation is very different than the other patients that my physicians were treating. Initially, I thought, well, the way Kyla cares came about was, when I was in New Orleans, with the time off from work, I reached out also reached out to children's hospital because I figured that would be a great route to find out how they were basically, you know, in the theater with basically big kids running around, running around the theater. So I figured that it would be a lot of insight that maybe the kids or the kids would be able to give me as it relates to how they manage. And so I connected with Children's Hospital is already connected with them, because we do a lot of outreach through Disney. And with Shriners Hospital Children's Hospital, so it's rather easy to connect with them. And that's when I discovered that the kids were having horrific outcomes as well as it relates to glucose management. And I was really moved by the fact that the endocrinology team, stressing to me just the effects that this disease is having on communities of color, specifically kids of color, and how they were having different outcomes in their Caucasian patients. It really struck me and months after that initial meeting, I was just harping on the information that I was given. And that's how eventually, that's how coworkers came to be as a result of that meeting at Children's Hospital with the endocrinology team,   Stacey Simms  16:50 we're going to talk about Kyle cares. And we're going to come back to these disparities that are just, they're heartbreaking, and they are real, just to finish kind of on your experience, you're able to go back and perform. And as you said, you you kind of bounce on, if that's the right word, you kind of go back and forth between the Broadway cast the touring cast. I know, everything's messed up now because of COVID. But from from the time you went back, were you able to go back to the roles that you had been performing and loving before your diagnosis?   Kyle Banks  17:22 Yeah, I was, I'm just so happy to have been able to figure out how to do that safely. Because I did it for so many months. Luckily, without any horrific events happening, like me passing out on stage, or even behind the stage, for that matter, I was able to make it through that very scary time period, without any of that happening. And I'm very lucky to have that had a seizure with my glucose being so low so often. But yeah, I was able to figure out how to do it and how to continue doing all of the things that I love. And like I said it was the community making the information that so many people are just so eager to share online that really helped me push through   Stacey Simms  18:11 what technology Do you use now?   Kyle Banks  18:15 You Economy pod influence, and the Dexcom ci six, continuous glucose monitor?   Stacey Simms  18:22 Are you able to I think I know the answer to this, but are you able to kind of hide that stuff under your costumes? Or is it shown I'm curious what that looks like.   Kyle Banks  18:32 Um, you know, the wardrobe department at lion kings so supportive in just just extremely loving and nurturing through this whole period gluinos first outfit with my Omni pod, I was so concerned that it will cause problems for wardrobe. And when I brought it in and sold it to them on my own. It's like, Oh, that's no problem. So they made me flesh tone bands for my arm and for my abdomen that I could wear deserve scenes in the show where we repair on top. And it was pretty simple fix. Wow, that's great. Yeah, I think they made my slipcovers in like two minutes, like maybe like five minutes before the first show when I was wearing the really simple thing. That's cool. All right,   Stacey Simms  19:20 let's talk about Kyle cares. I am going to come back and ask you a lot of Broadway questions later. But let's talk about hierarchies. Right now. This is your nonprofit. As you mentioned, this provides grants you do a lot of work to get technology for children for young adults with type one. And I've done a little bit of reporting over the years, frankly, not as much as maybe we all need to be thinking about but some reporting on the racial and ethnic disparities, because it's really incredible when you dig into it. When you look at use of insulin pump technology. It's something where, you know, 1/5 of black children compared to white children use comes from my understanding of how Craig if I'm wrong, it's not only Because of income or education or insurance, you know, it's a question of, I don't know, you tell me I shouldn't be talking to you about this. Tell me what you have found out, what should we be thinking about?   Kyle Banks  20:11 Yeah, you know, that's that was my thought as well, when I, when we first began, like digging into Kyla cares and figuring out, you know how we wanted to help. providing grants that can go towards the technology would be the most beneficial route. And we soon discovered that, you know, the complicated the situation is, is much more complicated the financial barriers that keep people from accessing the technology, especially with kids, the stigma surrounding diabetes, specifically type 1 diabetes is really high. And a lot of kids, even the ones that have insurance and have their parents have the financial means to access to technologies, they still don't want to wear them because they don't want to feel different than their peers or don't want the attention that wearing these medical devices on their bodies brings into their lives, we've discovered that a lot of what is needed is one diabetes education, just making sure that families of color have like the basic information needed to care for themselves for a loved one living with the disease. You know, things like, you know, reinforcing the latest glucose management practices and why CG ins and pumps are beneficial and know ways to avoid hyperglycemia and hypoglycemia, pre bolusing movement like walking after meals and using incorporating more water into one's daily water intake as a way to flush excess glucose out simple things like this, we're finding that many parents and people living with the disease aren't aware of them, especially those that have been living with the disease for an extended period of time. It's sort of like they spaced out all of the latest information as it relates to care or management of this disease. So yeah, there's there's a lot of confidence building that needs to happen. Because we live in communities of color.   Stacey Simms  22:21 Do you think that and listen, I don't mean to put you on the spot, I know that you are not in you know, you're not an endocrinologist, you are not a perhaps an anthropologist, you know, as I said, these questions. But, you know, I think it's so important that we could try to talk about these things openly. And I wonder if, as you talk about better education for the patients and trying to get these kids and their families to, you know, be more accepting or look at different, you know, technology, not worry about fitting in. What about the endocrinologists themselves? Do you think that there is a problem or a situation here where, without meaning to even right, I mean, I'm not quite sure how to phrase this, Kyle. But I guess what I'm asking is, do you think they treat patients of color differently? They don't say, Hey, here's a CGM, or here's a pump, or here's, are you finding that sometimes the endos are not trusting their patients, I'm not even sure how to phrase it, but they're not, they're not giving them the opportunities to use the technology.   Kyle Banks  23:18 This is indeed true. I'm discovering that a lot of patients living with type one, especially people of color, are not even being offered the latest technology or technology in general, to help them with, with management. And I mean, there's so many things that goes into that there's a shortage of endocrinologist, so it's really hard to get an appointment, a lot of these endocrinologist worked. The cultural differences that many endocrinologist face when dealing with patients can be intense. In those moments, we only have 30 minutes or hours with someone to try and figure out why they're having so many problems, and just not being able to relate to the human being that's sitting in front of you and their lived experiences. It does create these situations that eventually lead to horrible outcomes for the patient. So and I'm not saying that, you know, all endocrinologists are approaching these situations with ill intent. I just think it's just the way things are set up right now or the way the way the system is set up. It's not serving the patients, especially specifically patients of color, well, those issues are, do exist and we need more endocrinologist of color, or more doctors to go into endocrinology into the field. And we need need some culturally sensitive training before in the cringe for occasion and in the prints that are treating people of color as well.   Stacey Simms  24:58 While these are tough issues. To talk about you made an interesting point earlier about the way you found the care that has helped you through the most, and that was through the community. And I think that that's a story that I've heard over and over and over again, by people who belong to all different types of racial, ethnic, socio economic, you know, different groups. We come when I've done this, I've said, Hey, I have something I want to try, I bring it to our endocrinologist. And he says, oh, great idea. Sure. He didn't suggest it, it doesn't mean that he's holding back something or trying to keep it from me. He just was, you know, for whatever reason, we have a fabulous endo, you know, that wasn't something that was on his radar. And I wonder, too, just in the last couple of years, we finally had these discussions about getting more people of color at conferences represented in the community, you know, jdrf, beyond type one, friends for life, as you mentioned, children with diabetes, you went to the children with diabetes friends for life conference in July, we met for about three seconds. So thanks for for that I really ran up. Kyle as he was trying to start speaking and I was like, you have to come on the show. It's great to meet you. But just being there, I always say we were so lucky, because I saw people in the community that looked just like my son. And my family, from the very beginning didn't even occur to me that we weren't presented a long way of saying, Kyle, going to friends for life this summer, I've got to assume that you met some families of color, that you felt that you were there to have these kinds of conversations, not just for that, I mean, you have so many great stories to tell. But let's start there. What was that like for you this summer,   Kyle Banks  26:31 it was an amazing experience. And children with diabetes is actually one of the organizations that were Kyla cares is partnered with, to expose more families of color to that experience. And we actually brought a few families from New Orleans to friends who live with me as well. So it was really great to see the process of opening up to being more engaged with management happened in real time. Like the kids that came with me, I watched them a little bit apprehensive at first going into like this very white space. And not knowing what was going to happen or what the experience would be like or, or even I tried my best to just explain the benefits of being there. But I think it's something that you have to experience firsthand to really get the gist of what it's about. So it was great to see the kids just open up and make other friends. Because many of these kids, they don't know any, they're the only person they know living with type 1 diabetes. So to see them make up a friends that living with type 1 diabetes or at dinner, you know, to hear them discuss, you know, pre bolusing. And you know how many carbs are in their meal and just for them to be able to have those companies have stations in this setting freely and not feel judged or not feel different. And by the end of it, you know, they're exchanging numbers they've made friends know, they're definitely more engaged in their care, checked in on a few of them. And they're just a lot more excited about being healthy and doing the things that they've learned that the takeaways from the conference, and I was excited to see them incorporating some of those lessons into their own self care. So because lets me know that no, this can work if we expose the kids, specifically kids of color if we expose them to these types of experiences that can have a positive effect in their lives and in their care.   Stacey Simms  28:42 Can I ask some Broadway type questions? Oh, cool. All right. Okay. Love it. Alright, so we were fortunate enough to see the Lion King on Broadway. And you know, what an exceptional show. I think most people are familiar with the incredible costumes, the staging, the dancing. I mean, it's just an incredible show. Tell us a little bit. You've played so many different parts in that as I'm looking through your biography, right? What have you played in that show?   Kyle Banks  29:06 Oh, my God, I played. I'm in the ensemble, or a lion king, but I've also understudied and fossa. And just being in the cast of liking has been just an amazing experience. It's been like a dream come true. And it's also it's one of it was one of my favorite cartoons outdoors, or Animated Movies of the child. So to be a part of the cast. It's just been a dream and being on Broadway and touring the country. I mean, I've been able to see. I mean, there aren't many cities that I haven't been to Wow. And Lion King is such a popular show that when we traveled to the city, we get to sit for three and four weeks at a time. So really get to golf ourselves in the communities in which we visit and that's actually been the best Part.   Stacey Simms  30:00 What's it like when you as the cast members come down the aisle, because that is a breathtaking moment for the audience. And we're looking at these incredible costumes and the carrot they never break character roll. Ooh, and on, there's got to be little kids backing you. Like what is that, like for you all   Kyle Banks  30:18 the excitement in the faces of people. I mean, the kids are one thing, but as the adults are adjusted to experience the show, I mean, I've had chrome men come to me to come up to me after the show with tears. And now it's just talking about how move they were by what they experienced on the from the stage. And it's really cool to be part of a show that is so engrained in, in our culture and so loved. So meaning it means so much to so many people. It's just been amazing experience being connected to the show,   Stacey Simms  30:55 unfortunately, I'm gonna guess you haven't performed in a while, what's the latest with COVID and performances?   Kyle Banks  31:01 Well, Lion King is opening on Broadway, September 14, and then the tour in October. But we made the decision that transitioning into like this, some of them new ventures in my life, one of which is Kyla cares, now over the pandemic. And having time off really allowed me to just dig into the work we're doing here at COVID cares in the partnerships that we've been able to establish with other organizations. And this work is so meaningful to me. Because I know personally, just the difficulties living with type 1 diabetes, but also, I personally experienced the triumphs of figuring out how to care for myself and still be a part of the things that bring me joy, and how to do that safely. want other kids who I want kids to know specifically that, you know, they can still do all of the things that they want to do in life and really just give them the tools they need to, to lead a healthy life and to be normal kids, you know, and for the adults that are that are living with this disease to know that know, if you engage in your care, things will begin to turn around. And it doesn't have to be this horrific experience where it's just a steady decline in health, you can still lead a healthy life with type 1 diabetes.   Stacey Simms  32:37 Kyle, before we wrap it up here, I know your funds for like an A die. Let me just throw a few rapid fire questions. Sorry, okay. All right. Has your Omni pod ever gone off on stage? Like, have you ever had an alarm or Dexcom alarm during a performance?   Kyle Banks  32:56 Oh, my God. Yeah. I mean, I, I've had my podcast on stage. So like standing there, and it's going off? And and I mean, what can I do? I try to do my best to try to avoid those moments. But I'm even one time is a funny Omnipod story, my Omni pod, expire it in my PBM was in my dressing room, so I didn't have time to run to get it. So I took the Omni pod off when it's still blaring and just put it in the trash, which was near the stage. But you know, far enough where it could be heard from the stage? Well, after about two scenes, I come off stage and I see all of this commotion stage managers and security for the theater of him around this trashcan trying to find out what's this loud, glaring noise? And is it dangerous? Like do we need to stop the show? And I'm like, No, I'm so sorry. But it's my part. I explained it all. And it turned into a funny moment. But it was not. It did security was not induced.   Stacey Simms  34:11 That's funny. Oh my goodness. Yeah, that can happen. For sure. I'm sure people are gonna ask me to ask you just you know, you've talked about how you kind of learned to figure your blood sugar to figure out your eating and you figured out, you've been able to figure out what works for you on stage. And I'm curious if you had any advice for kids who are doing school plays or adults who are performers?   Kyle Banks  34:33 Well, they, you know, the thing that really helped me out, honestly, was really learning how to incorporate the technology into my care, and leaning heavily on my CGM, and all of the information that it was delivering to me and which allowed me in turn to respond to what my glucose was doing or any fluctuations that I was having. you're experiencing, it really just helped me to not not having to finger prick and wait for that information, which is limited because it doesn't let you know doesn't inform you if your glucose is rising or falling. So just having that information just made a world of difference, and allow me to really just care for myself when I was performing. And it also allowed me to focus on what I was doing, as opposed to just being so concerned with my glucose.   Stacey Simms  35:31 Before let you go, how can we help Kyler cares? What do you need from us?   Kyle Banks  35:36 Unfortunately, because of COVID, a, we've had a really difficult time with fundraising, all of the fun ways in which we would go about raising funds have sort of been snatched from us, we did a fundraiser called from Broadway with where I incorporated a concert of love songs performed by artists that are currently on Broadway, from shows like Book of Mormon and Hamilton Lion King, of course. So during the shutdown, we produced that and presented it virtually, we were going to present the live version of that in New Orleans at the singer theatre, which is a theater that houses most of the Broadway shows that visit the city. But unfortunately, New Orleans is like one of the hotspots for this fourth, this fourth way the pandemic, so a children's hospital and other health care facilities that were parking within the cities. And neither did we felt comfortable with a live gathering of 2800 people with all that's going on. So, um, we're just trying to figure out, you know, the best ways to raise funds and how to continue connecting with our community, because it COVID is making it really difficult to gather. And it's something that that's something that's really important, as it relates to sharing this information with one another, helping with donations would be great. Also just more people of color, just sharing their stories as well. We find that the more visible we are, the more people can see themselves, the more it helps with feeling that you're part of and helps with confidence building and the reduction of stigmas and just knowing that you're not alone, so it's a two ways people can really help.   Stacey Simms  37:39 Well, Kyle, thank you so much for coming on for sharing your story. I hope this the break, I'm gonna call it from performing isn't the end of your performing. So   Kyle Banks  37:55 not at all. Well keep us posted. I most definitely will. I'll let you know. And I'm looking forward to you know, again, producing one of the things you know, feeding my artistic muscle is really excited about producing the shows from Broadway with love. And I hope I can get back to that because the first one was a lot of fun. So if people haven't seen it, you can go to our YouTube channel and check it out. But yeah, I want to get back into that when things when COVID allows us to do so. Excellent. We look forward to it.   Stacey Simms  38:30 Thanks so much for joining me.   Announcer  38:36 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  38:42 A lot more information on Kyle on Kyler cares. You can find it all at Diabetes connections.com. At the episode homepage, there's a transcription there as well as there is for every episode, I was so excited to talk to Kyle. Some of you may know I'm just such a real Broadway fan. I love musicals. I highly recommend Schmigadoon on Apple TV, if you haven't watched that yet. It's very entertaining and fun. I had actually talked about starting a Broadway type podcast during COVID. I still may do that I have in the back of my head how I want to do it, but it's gonna be so much work the way I want to do it. So we'll see maybe next year. I don't know. I'll keep that in my back pocket for a while. A lright, Big thanks to Kyle for coming on. And coming up. I'm going to talk a little bit about back to school what it looks like in my house this year. And also some feedback about our last episode. Benn's big trip to Israel, but first Diabetes Connections is brought to you by Dexcom. And you know, I do get a lot of questions about Dexcom coverage for people on Medicare. And why not? It's not like you stop 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 for patients who meet the coverage criteria. If you have 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, go to Dexcom.com/G6-Medicare, I will link that up this episode, don't worry about writing it down, you're gonna 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. Here's the link but it's over at the homepage dexcom.com.com/G6-Medicare.   Alright, I was very worried, as you know about the episode with Benny, because as you heard if you heard, he was far from perfect when he went by himself to Israel, which I didn't expect it and expected to be perfect. But you know, I see a lot of parents who post on Facebook and want their kids to stay under six for their agencies and never go above 130 on the Dexcom. And you know, we don't live like that at all. I wanted Benny to be honest and open and boy was he ever. It was interesting to hear him talk about what it was like and talk about diabetes camp and you know, gosh, I'm so thankful knock on wood wherever I can knock here, you know, he's a confident happy kid. He's got strong opinions, and I really feel like he's gonna be okay, right after a trip like that. So the feedback I got was just fun. A lot of people reached out with their own stories. Corinna wrote, thank you so much to both of you for sharing this experience. It's so valuable to see how a parent can continue to support their son or daughter in an age appropriate manner. Lee wrote, I love that he's so transparent and genuine. I'm betting on Benny, several emails and direct messages saying thank you for being honest, it's really nice to know that we don't have to be perfect balancing independence and could quote diabetes, health and numbers can be difficult. A lot of acknowledgment about that. But my favorite came from Joan, who emailed me and said, This reminded me of my 16 year old adventure on a cross country bus tour. We were still using urine testing. This is 1974. No CGM is no pumps, no cell phones or texting. I have a similar well adjusted attitude as your son which has served me well through my 50 plus years. With T1D. What I learned from this podcast was what a challenge it must have been for my parents, I have traveled the world had my share of health issues, enjoyed my life. And I'm not eating celery crying in the corner. Thanks for sharing this story. Joan, thank you for sharing that email. And the funniest thing about it, I read it to Benny, he did not know what your urine testing was, he had no idea that finger sticks weren't a thing at some point in in pretty recent history. 1974. So you know, I got to talk to him and explain it's so funny. And he was diagnosed so little. And he's not a diabetes podcast or a researcher. And I see what he doesn't know. It's so interesting. So Joan, thank you so much for that. If I get any interesting stories or funny emails, I'll definitely share them as we go forward. But I want to just quickly bring up back to school, which is still looking so difficult in so many places across the country. And I wish you all well, especially those of you with younger children. Oh my goodness. So I've got to going back to school, my daughter is a junior in college, she is back. And my husband drove with her all the way to New Orleans or she goes to school because she's got a car this year. Thanks for giving me something else to worry about. Yay. But she's doing great. And Benny is a junior in high school, and he's driving to school, our school will start the day after this episode goes live. We're in the south. So they go to school before Labor Day growing up. I always went back to school right after Labor Day, but he's driving to school this year. I don't know when I'm going to see him. He's so busy. And right now, his school does have a mask order with a very large public school system in North Carolina. And he's vaccinated. I assume that we'll get the booster shots as they roll those out. But it's going to be interesting to me. I mean, he goes to an enormous High School. It is I want to say there are 650 kids in his class in his grade. So it's a very big school. It's a crowded school. So we'll see how this works out. He expects to be back virtually in school very soon. I don't know. But I will share that I realized just today. I have to get all his diabetes stuff back and bring it to the nurse. And I know you're thinking well, Stacy, you've done this every year since he was in preschool. How could you forget? We know with COVID we haven't even been in the school. I went back. I don't even know when last year a couple months ago could have been last week. I have no sense of time anymore. I went back and got all the stuff that we left there from 2019 2019 2020 that school year, and I haven't been back to see the nurse since so we're getting the school form signed. I got to put his stuff together and make a new kit. I um, so we'll be doing that. And then you know, he's you know, Benny, he's super casual. He'll take his backpack everywhere. So he'll have supplies, but I like to have stuff at the nurse's office for him. As well, and hopefully it's the same nurse, because man, she was great. And she totally got that he's super casual and just wants her to be there when he needs her and doesn't need her checking on him. And, you know, really terrific person. There are, at least at the time when he was a freshman, there were 21 kids at that school was type one. And I'm going to assume there are more, because I don't know about your town. But we're having more and more cases here. And it's not anecdotally I just talked to the end of the other day, and he said they have many more. And we'll we'll talk about that in a future episode. You know, many people think COVID is sparking more cases of all types of diabetes. Before I let you go, take a moment to check out our YouTube channel. We are getting a lot of engagement there. I've got the in the news episodes over there. So if you don't know that we have a YouTube channel, it's just Diabetes Connections on YouTube. And all the episodes are there. If you prefer to listen to podcasts on YouTube, which many do they're most of them are not video podcasts. It's just audio, but a lot of people like that platform. Also the newscasts, though, are video so if you want to see me play an anchor lady, you can head on over there and I'll link that up in the episode as well please subscribe if you head over there you know very simple just click Subscribe on the on the YouTube channel. Thank you as always to my editor John Buckenas from audio editing solutions. Thank you so much as you listen next week, we are likely going to air the Afrezza interview that I did over the summer. Still working on a few things but it looks like that one is going to come through for next week very excited to get an update from them. They've been around for a while. But man are they making a push ahead as they have more studies, more studies with children coming up and lots of interesting stuff, Afrezza and of course the newscast Wednesdays at 430 Eastern Time live on Facebook. 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

    Ep 404 Final In the News

    Play Episode Listen Later Aug 20, 2021 9:06

    It's "In the News..." the only LIVE diabetes newscast! -- Top stories this week include the conversation around COVID booster shots for people with diabetes, Lyumjev insulin is approved for use in pumps, news from Beta Bionics' partner Zealand glucagon, Insuin4All at the White House and a T1D family travels to see a T1D Major Leaguer. It turns into a very cool meet and greet!   Join Stacey LIVE on Facebook every Wednesday at 4:30pm   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 [vc_row][vc_column][templatera id="11880"][/vc_column][/vc_row]

    "I'm So Happy I Went!" 16-year-old Benny spent one-month abroad (without us)

    Play Episode Listen Later Aug 17, 2021 54:55

    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

    In the News.. Tandem timeline update, T2D closed loop study, camel milk?! and more

    Play Episode Listen Later Aug 13, 2021 7:00

    It's "In the News..." the only LIVE diabetes newscast! Top stories this week: lots of interesting news in the latest Tandem Diabetes investor call including timeline and country updates. Researchers see whether a closed loop system can help people with type 2, new recommendations for gestational diabetes screening, camels milk for diabetes?! and the The Association of Diabetes Care & Education Specialists Annual Conference starts this week. Join Stacey on Facebook every Wednesday at 4:30pm EDT to watch "In the News..." Live. Learn more about the Book to Clinic Program 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: Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, whenever you want. XX In the News is brought to you by Real Good Foods! Excited to have them back as a sponsor! Real Food You Feel Good About Eating. XX Our top story this week.. couple of interesting nuggets in Tandem Diabetes' recent investor call. The company has grown at least 40% in nearly every quarter since late 2017 when the first major update came through on the Tslim X2.  They're getting ready to launch Control IQ in Germany and France.. and they're moving ahead with studies of this hybrid closed loop system down to age 2. Timing of NEW features is still a bit up in the air.. the company says they answered more FDA questions about bolus by phone and feel on track for approval by the end of the year – iOS and Android. T-sport submission will now likely happen in 2022. Like a lot of diabetes tech, COVID pushed these timelines out. One other little tidbit.. looks like there won't be a big user manual with the mobile improvements  – the training will be part of the app itself. Seems like common sense, but that's a big change that apparently the FDA asked for.     https://seekingalpha.com/article/4445137-tandem-diabetes-cares-tndm-ceo-john-sheridan-on-q2-2021-results-earnings-call-transcript XX How about a closed loop for type 2? New research from the University of Cambridge shows it works just fine. This was interesting because the idea here was to look at people who require dialysis or a kidney transplant. This was a different system, a fully closed loop – no meal announcements needed. People using the artificial pancreas system spent more time in range and less time with hypos. This system has an adaptive algorithm and got better as it went, the average time in range on day one was 36% and by the third week it was 60%. They didn't list much about the technology here – but I'm going to follow up.  It's not clear why these researchers aren't also studying this completely closed loop for people with type 1. They are moving ahead with a new study in people with type 2 who do not need dialysis. https://www.healtheuropa.eu/artificial-pancreas-trialled-in-type-2-diabetes-patients/110399/ XX New recommendations for gestational diabetes – screening should continue into the second trimester says the U.S. Preventive Services Task Force. They say screening for gestational diabetes improves both  maternal and infant health, and treatment. Gestational diabetes is estimated to occur in up to 9-percent of all pregnant women but might be up to three times as high depending on the diagnostic criteria used, say these researchers. The task force recommends clinicians screen for gestational diabetes between 24 and 28 weeks', using a two-step approach of both a screening tool (oral glucose challenge test) and diagnostic (oral glucose tolerance test), just the tolerance test, or fasting plasma glucose tests.   https://www.medpagetoday.com/endocrinology/diabetes/93984 XX A new way of looking at glucagon.. these researchers say they want to administer it as a preventive.. writing in the journal of the American Chemical Society these researchers say they have developed hydrogels that remain intact in the presence of glucose but slowly destabilize as levels drop, releasing glucagon into the system, safely raising blood sugar. This is very early on and hasn't yet been tested in people.. the early challenges so far have been keeping the hydrogel stable and keeping the glucagon from leaking out of the water like structure. But they say they've got it and are moving on to further studies. https://www.news-medical.net/news/20210720/Novel-method-for-glucagon-delivery-to-help-individuals-living-with-Type-1-diabetes.aspx   XX More to come, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods. Where the mission is Be Real Good They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients— we are big fans of the pizza – Benny puts his in a frying pan, I prefer the air fryer. They keep adding to the menu line with breakfasts like waffles & breakfast sandwiches and great meals made with cauliflower & stuffed chicken. You can buy online or find a store near you with their locator right on the website. I'll put a link in the FB comments and as always at d-c dot com. Back to the news… Is this the new okra or something that might actually work? Looking at camel's milk to help lower blood glucose. camel milk has many of the sought-after bioactive properties of so-called "superfoods." And is said to help with insulin resistance and glycemic control. There's a clinical trial going on right now in Abu Dhabi looking to see if that's folk lore or the real deal. One study they point to is in a camel breeding community in North India which found that those who regularly consumed camel milk had a 0% rate of diabetes. Quick warning here.. camel milk if you can get it is very expensive and you're warned to avoid it in raw form..     https://www.medscape.com/viewarticle/956261 XX The Association of Diabetes Care & Education Specialists Annual Conference starts this week. The theme is “Changing Forward,” was designed to highlight patient care that moves away from what organizers call an institutional, task-oriented approach. They want to push for more individualized care that reflects the diversity of people with diabetes. It's a virtual conference and of course we'll have an update next week from any sessions or reports that are of interest. XX That's In the News for this week.. if you like it, please share it! Quick housekeeping note and a thank you… I have something called the book to clinic program where I'm able to supply pediatric endocrinology offices and clinics with my book – The World's Worst Diabetes Mom. I'm thrilled and flattered that educators and endos think this is of value to families. Big thanks to our newest book to clinic sponsor, Dia Be Tees - their mission is to raise Diabetes Awareness through modern, cute, humorous and fun tees! 10% of their profits go to JDRF. It's very reasonable to become a book to clinic sponsor! if you're interested please let me know. And if you're a clinic who wants books, reach out and I'll put you on the list. Please join me wherever you get podcasts for our next episode -Tuesday –  you'll hear from my son and get his thoughts on what it was like to spend one month overseas with a youth program not focused on type 1. He's 16 and you bet I'm happy he's home, but we both learned a lot. Thanks and I'll see you soon

    "It's Important You Enjoy It" - T1D Coach Eoin Costello is Passionate About Fitness

    Play Episode Listen Later Aug 10, 2021 43:28

    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

    In the News... FDA hints on D-tech timeline, Libre 2 app approved, interchangeable insulin and more!

    Play Episode Listen Later Aug 6, 2021 7:44

    It's "In the News..." the only LIVE diabetes newscast! Top stories this week: FDA hints on 2021 D-tech timeline, the Freestyle Libre 2 app is approved, interchangeable insulin to cost less, an "astonishing" type 2 teen study and a big fall-off in use of metformin in people with type 2. Join us on Facebook live every Wednesday at 4:30pm EDT This week I was on the road, at the Podcast Movement convention. Sorry about the setting! Back in the home studio next week. 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: Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  I'm on the road – again! This time I'm at podcast movement a big convention going on in Nashville.. so apologies if the audio and video are a little bit off but I think we're good enough. And As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more when you have the time. XX In the News is brought to you by Real Good Foods! Excited to have them back as a sponsor – we're big fans. Real Food You Feel Good About Eating. XX Our top story this week… a brief comment about diabetes devices at the FDA might give a hint to some timelines we're all watching. FDA Center for Devices and Radiological Health head Jeffrey Shuren says COVID-19 remains a source of uncertainty. "Goal is to be back to normal as we roll into 2022," Shuren said. "But there are a lot of variables that could impact that… don't know if we'll get hit with another tsunami of submissions for full marketing authorization for a lot of the COVID products. Getting back on track, everything is moving for the diabetes submissions." Products in front of the FDA expected by year's end: Medtronic's 780G and Zeus CGM, Insulet's Omnipod 5, Tandem's bolus by phone and it's expected that Dexcom's G7 will be submitted soon. https://seekingalpha.com/news/3715640-fda-devices-head-says-progress-being-made-on-diabetes-devices-backlog XX The FDA did clear one diabetes product this past week.. Abott's Freestyle Libre 2 iOS app. The Libre 2 hardware was approved last year.. this is the app for Apple phones.. it gives users optional real time high and low alarms – still have to scan to see the actual values. It updates every minute – only CGM that does – and it lets caregivers remotely monitor. Freestyle Libre 2 has a 14 day wear.. no exact date on when the App will be available or when it'll be available for android users.   https://finance.yahoo.com/news/abbotts-freestyle-libre-2-ios-130000861.html XX Other side of the coin, Abbot will pay $160 million to resolve claims that two of its units submitted false claims to Medicare. The Justice Department said free glucose monitors were provided to get patients to order more testing supplies, and the companies routinely waived copayments. They were also accused of charging Medicare for ineligible patients and for more than 200 patients who were actually dead. https://www.reuters.com/business/healthcare-pharmaceuticals/us-says-abbott-units-pay-160-mln-resolve-alleged-false-medicare-claims-2021-08-02/ XX Back to the FDA.. for the first time, they're allowing a less expensive brand name insulin to be substituted for the original. Semglee – approved last year – is basically the same as Lantus but it's a lot less expensive. Semglee is now is the first-ever to earn the “interchangeable” designation Trusted Source, meaning it's fully approved to be substituted for Lantus at the pharmacy. No need to get permission from the doctor. This is the second copycat of Lantus; the first was Eli Lilly's Basaglar, launched in 2016. There is some new branding and labeling needed here, so expect a relaunch of Semglee by the end of this year. FYI the pens are a little different even if the insulin in them is the same. It's always a good idea to know what your doctor is prescribing and what your pharmacist is giving you.. even if it costs less. XX Big new studies focusing on children and teens with type 2 diabetes.. showing how different the disease can be in younger people. The studies, published July 29 in the New England Journal of Medicine, showed that within 15 years of a Type 2 diabetes diagnosis, 60% of participants had at least one diabetes-related complication, and nearly a third of participants had two or more. These Texas researchers call it astonishing and say it appears type 2 in youth is much more aggressive than in older people. These researchers say more treatment options are needed for younger people because lifestyle changes don't seem to be enough. The study also showed a lot of families don't have regular access to medication or health care providers. They say it was a diverse study representative of teens and kids in the US. https://medicalxpress.com/news/2021-08-young-adults-complications-diabetes.html   XX More to come, including new about people with diabetes who stop taking a very commonly prescribed medication..  but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Real Good Foods! We've been fans for a long time – Benny especially likes their ice cream. Real Good Foods makes delicious food you'll feel good about eating; high in protein, grain free and always made from real, nutrient dense ingredients. The labels are easy to read – because the ingredients aren't chemicals and fillers. Whether it's waffles or burrito bowls or stuffed chicken or the pizza that started it all.. I think you'll really love Real Good Foods. Learn more with the link in the FB comments or as always at d-c dot com. Back to the news…   XX Interesting research using artificial intelligence to catch diabetes eye issues earlier – when they're easier to treat. Changes in the blood vessels in the retina cause diabetic retinopathy, the most common diabetic eye disease and a leading cause of blindness in US adults. There are several studies and institutes looking at the use of A-I here, but these folks at the Indiana University School of Optometry say they're using information that is often ignored for diagnosis and it's making a big difference. The National Institutes of Health's National Eye Institute funded the work. https://www.futurity.org/biomarkers-diabetic-retinopathy-blindness-vision-2604812/ XX Nearly half of adults prescribed metformin after a new diagnosis of type 2 have stopped taking it by 1 year. The fall off is most dramatic during the first 30 days. These researchers say it didn't matter how long the prescription was written for and most who discontinued still had A1C's high enough to still need glucose lowering medication. They say as physicians quote - A lot of times we're quick to prescribe metformin and forget about it...Physicians might write a script for 3 months and three refills and not see the patient again for a year...We may need to keep a closer eye on these folks and have more regular follow-up, and make sure they're getting early diabetes education." https://www.medscape.com/viewarticle/955893 XX That's In the News for this week.. if you like it, please share it! And quick note this is our 400th episode. I've been busy with some behind the scenes stuff and it caught up to me! A huge thank you to all of you.. incredible support from this community. Six years and 400 episodes is an accomplishment that I've only reached because of you. And join me wherever you get podcasts for our next episode -Tuesday –  I'm talking to Eoin Costello the host of his own diabetes podcast – about staying active or starting getting more fit with type 1. This week's interview – the one that's out right now – is a look at the features of Omnipod 5 – the newest hybrid closed loop system in front of the FDA. Thanks and I'll see you soon    

    "We really listened to what people wanted" - A look at Omnipod 5 with Horizon

    Play Episode Listen Later Aug 3, 2021 45:50

    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

    In the News.. T1D gene mapping, new T2D meds, insulin implant research & more!

    Play Episode Listen Later Jul 30, 2021 5:13

    It's "In the News..." the only LIVE diabetes newscast! Our top stories this week: 100 years of insulin, the largest genetic study of type 1 diabetes is complete, approval for a new type 2 meds for teens, research moves forward on an insulin-producing implant and an Olympic hopeful starts a diabetes sports foundation!. Watch "In the News..." live every Wednesday at 4:30pm EDT on the Diabetes Connections Facebook page 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:  Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  I'm on the road, so apologies if the audio and video are a little bit off but I think we're good enough. And As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more when you have the time. XX Lots of articles, op-eds and celebrations to mark this week's 100th anniversary of the discovery of insulin. In July of 1921, the collaboration of Frederick Banting, Charles Best, James Collip and John Macleod led to the isolation and purification of insulin. Most marking the occasion this year are focusing on access and affordability.. The International Diabetes Federation is launching a three year campaign to celebrate the advances made in diabetes, but also to call on more action to ensure all people living with diabetes have the best possible quality of life and health outcomes. https://insulin100.utoronto.ca/ XX The largest and most diverse genetic study of type 1 diabetes ever undertaken is complete. Researchers at UVA say they've identified the “most likely causal genetic variants associated with risk and their target genes.” They hope the results will help lead to better medical and drug treatment or possible prevention and genetic treatments. This study looked at more than 60-thousand people. and identified 78 regions on our chromosomes where genes are located that influence our risk for Type 1 diabetes. Of those, 36 regions were previously unknown. https://news.virginia.edu/content/largest-ever-type-1-diabetes-genetic-study-identifies-potential-treatment-targets XX New partnership announced between LifeScan the glucose monitoring company and Noom, a digital health platform focused on behavior change. LifeScan will be the first digital health diabetes management company to partner with  Noom's Diabetes Support Program. The goal is to bring personalized health insights to better address eating habits and weight management. The new fully-integrated OneTouch Solutions program will be available first to consumers in the US starting this Fall. https://www.lifescan.com/news-and-updates/2020-press-releases/noom-to-launch-digital-diabetes-and-weight-loss XX AstraZeneca gets approval for its once weekly diabetes medicine  Bydureon in kids as young as ten.   The injectable is used for people with type 2 diabetes. The approval comes about a month after data showed the drug significantly reduced blood glucose levels in adolescents compared to placebo. Bydureon is already approved for adults with type-2. The only other non-insulin options available for adolescents with type 2 have to be taken daily. https://www.reuters.com/business/healthcare-pharmaceuticals/astrazenecas-weekly-once-diabetes-drug-gets-us-approval-children-2021-07-23/ XX Rice University bioengineers are using 3D printing and smart biomaterials to create an insulin-producing implant. The three-year project is supported by a grant from JDRF. They researchers will use insulin-producing beta cells made from human stem cells to create an implant that senses and regulates blood glucose levels by responding with the correct amount of insulin at a given time. The goal here is to show their implants can properly regulate blood glucose levels of diabetic mice for at least six months. So we're really early on here but it's an interesting new way of looking at reproducing what the pancreas does. https://indiaeducationdiary.in/rice-university-rice-team-creating-insulin-producing-implant-for-type-1-diabetes/ XX A judge rules that Roche did NOT infringe Insulet's patent – this case brought over a patch pump sold in the UK. We told you about this case a few weeks back.. Insulet claimed because of it's Omnipod patent, Roche didn't have the right to sell it's Accu Chek Solo. The judge ruled for Roche. https://www.jdsupra.com/legalnews/roche-diabetes-care-succeeds-in-uk-3307644/ XX An Olympic hopeful with type 1 is sitting out the Tokyo games due to an injury.. but she's also inspiring others and starting a new non profit to help other people with diabetes. Long jumper Kate Hall Harnden was on track for the 2020 Olympics, but was injured this past January Diagnosed at age ten, she and her husband have formed the DiaStrong Foundation, which aims to give financial assistance to people with diabetes who want to improve in their sport and diabetes management. They've planned to launch grants for financial assistance in July 2021, and those details are being finalized. They'll host two camps in Maine this year.. one for teens and one for any age. I've linked up to a great story in DiabetesMine if you want more info..   https://www.healthline.com/diabetesmine/kate-hall-diabetes-olympic-hopes XX That's In the News for this week.. if you like it, please share it! And join me wherever you get podcasts for our next episode -Tuesday –  I'm talking to Omnipod – we'll get a update on the Omnipod 5 with Horizon system. This week's interview – the one that's out right now – is with Gold Medal Olympian Gary Hall Jr – when he was diagnosed in 1999 he was told to give up swimming. He didn't and he talks about why.. and how he overcame what was conventional wisdom for athletes at the time. Thanks and I'll see you soon

    "We're not in this alone" - Gary Hall, Jr on Winning Olympic Gold with T1D

    Play Episode Listen Later Jul 27, 2021 28:09

    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

    In the News.. Oral Meds for T1D, Dexcom API News, Closed Loop and Teens, Olympics and more!

    Play Episode Listen Later Jul 23, 2021 5:40

    It's "In the News..." the only LIVE diabetes newscast! Our top stories this week:  Oral meds to prevent T1D move ahead, racial disparity in peds CGM use, what that Dexcom API news means, a new study with teens and Control IQ and a summer olympian talks about her recent T1D diagnosis. Join Stacey live on Facebook each Wednesday at 4:30pm EDT! 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:   Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more when you have the time. XX Our top story.. A new oral drug to prevent type 1 is moving along in trials. Right now it's called IMT-002 – and put very simply - it's meant to block a genetic trait that increases the risk for the disease and is seen in a majority of patients. It's a new way to think about treating type 1 – phase two studies could start next year. It's thought that this could help with other auto-immune diseases as well.. the next condition these researchers want to tackle is celiac. https://www.biospace.com/article/releases/im-therapeutics-reports-positive-results-in-safety-tolerability-and-mechanism-of-action-of-phase-1b-trial-of-lead-drug-imt-002-in-type-1-diabetes/ XX Could the global rise in diabetes have an environmental component? In an Advances in Pharmacology article, researchers say routine exposure to chemicals that disrupt our endocrine systems play a role in triggering diabetes. These researchers say "We often attribute patient's disease risk to individual choices, and we don't necessarily think about how systems and environments play into disease risk," They go on to say so-called lifestyle factors like exercise and diet fail to fully account for "the dramatic rise and spread" of diabetes. https://www.ehn.org/environmental-factors-of-diabetes-2653768475/how-endocrine-disruptors-contribute-to-diabetes XX A new study shows Black children less likely to start or continue with a CGM after a type 1 diabetes diagnosis. These researchers at Children's Hospital of Philadelphia or CHOP as it's commonly known, show that a racial-ethnic disparity in CGM use begins within the first of year after diagnosis. White children were more than two and a half times more likely to start CGM compared with Black children and twice as likely to start CGM compared with Hispanic children. There was a disparity even when broken down by types of insurance – commercial or government. These researchers say social determinants including structural racism, are likely playing a role in disparities in care and outcomes https://www.healio.com/news/endocrinology/20210719/black-children-less-likely-to-start-continue-cgm-after-type-1-diabetes-diagnosis XX Very large survey of women shows that half of those with type 1 or type 2 diabetes are not getting pre-pregnancy counseling. This study included more than 100-thousand women. Right now guidelines from many groups including the CDC and American Diabetes Association recommend providers offer women with diabetes health counseling before pregnancy to cut down on the increased maternal and infant risk associated with both conditions. These researchers hope to develop better tools for women & their doctors. https://publichealth.berkeley.edu/news-media/research-highlights/women-with-diabetes-and-hypertension-dont-receive-pre-pregnancy-counseling/ XX Big increase for time in range when kids use hybrid closed loop systems. We've heard about a lot of improvement, but in this study, the percentage of kids and teens with t1d spending at least 70% time in range… more than doubled after 3 months of using Tandem's Control IQ system. This was a study of about 200 kids, median age was 14, and it was a real world study – where the kids went about their lives, not in a clinical setting, and the researchers pulled the data electronically. Interestingly, sleep mode use increased through 6 months, while the exercise mode was used less over time. Kids with an A1C over 9 saw the most improvement. Those with an A1C under 7 didn't see much of a change. https://www.healio.com/news/endocrinology/20210714/more-youths-with-type-1-diabetes-meet-timeinrange-goal-with-hybrid-closedloop-system XX Dexcom gets FDA clearance for real time APIs.. what does that mean? Third party companies like Fitbit or Sugarmate which have long integrated Dexcom data have been doing so on a bit of a delay. Now they can do so in real time. API stands for Application Programming Interface, which is a software intermediary that allows two applications to talk to each other. Dexcom's Partner Web APIs will allow users to view all of their diabetes care data in one place to enable in-the-moment feedback and adjustments, the company said in the announcement.   https://www.mobihealthnews.com/news/dexcom-gets-fda-nod-its-new-api-integration   XX Cool new exhibit at Banting House – recent guests of the podcast and museum celebrating the birthplace of insulin. They're set to open up again this week – the first time since March 2020 – and there's a new computer generated exhibit. It does work outside.. In the square where Dr. Banting's statue stands. Giving visitors a virtual glimpse at the life and work of the man credited for the discovery of insulin. If you haven't visited – it's in Canada – or seen the museum, I highly recommend a spin around the website, we'll link it up. XX Summer Olympics are kicking off and by now you've probably heard that American trampoline gymnast Charlotte Drury was just recently diagnosed. She found out she had type 1 weeks before the 2021 Olympic qualifying trials, she revealed on Instagram last week. she and her coach pressed on and she basically got back into things within three weeks. She posted this photo of herself wearing the Dexcom. Drury is the first American woman to win a gold medal in trampoline at a World Cup That's Diabetes Connections – In the News.  If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday –  I'll share my conversation with Gold Medal Olympian Gary Hall Jr – when he was diagnosed in 1999 he was told to give up swimming. He didn't and he talks about why.. and how he overcame what was conventional wisdom for athletes at the time. This week's show is the story of Jack Tierney, diagnosed in 1959 with type 1 he's 81 and he says he's never felt better. Thanks and I'll see you soon

    "I've never felt better in my life and I'm 81 years old" - meet Jack Tierney

    Play Episode Listen Later Jul 20, 2021 42:56

    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 h