Podcasts about daario

NOW is the time to get your financial shit together! Mollie can help! Get in touch for a free consultation here: http://m3virtualaccounting.com/This illustration of Griff & Young Griff (with a dash of Franklin Flowers) is by Tribemun and you can see it here! https://www.deviantart.com/tribemun/art/ASOIAF-sketches-The-Golden-Company-302372019These chapters are the ones in which Tyrion plays Cyvasse with Young Griff and gives him some advice before heading to a brothel, and Daenerys meets with the Green Grace and gets offended by Daario telling her the truth.Credit to MetroGnome for the theme song, you can download it free and listen here! https://www.youtube.com/watch?v=XA6a7sYKeeAIf you'd like to join our Discord and get in on some of the convo, check it out here! Non-patrons welcome! https://discord.gg/rEF2KfZxfVIf you'd like to support the show, please go to https://www.patreon.com/unspoiled and become a patron or just follow us for updates!

In the episode, Tyrion Lannister struggles to find a fighter willing to stand as his champion in his upcoming trial by combat; Melisandre and Selyse Baratheon talk on Dragonstone; the Night's Watch continue to prepare for Mance Rayder's attack; Brienne of Tarth and Podrick Payne meet Hot Pie at an inn; Arya Stark and Sandor "The Hound" Clegane are attacked by bandits on the road; Daenerys Targaryen orders Daario to retake Yunkai; and Petyr Baelish assassinates Lysa Arryn. If you want to keep the fun going with us throughout the week, come join our Facebook group.JOIN THE WATCH DEM THRONES FACEBOOK GROUPhttps://www.facebook.com/groups/126567443834910/?ref=share&mibextid=NSMWBTTO WATCH AND SUBSCRIBE:Facebook:https://www.facebook.com/blackwithnochaser/Twitter:https://twitter.com/BeBlackNoChaser?t=pVFV06lBFdZRu72ot4uCjA&s=09Twitter:https://twitter.com/WatchDemThrones?t=q0ngrYPlugf0ttzM2jo39A&s=09Apple Music: https://podcasts.apple.com/us/podcast/watch-dem-thrones-by-black-with-no-chaser/id1641754247Spotify:https://open.spotify.com/show/1qI1bJ1vIlobu502w6zrtN?si=mtsa3gZYRZW_3FmlCrv7UgBWNC RADIO: https://apps.apple.com/us/app/bwnc-radio/id6443800363Amazon Musichttps://music.amazon.com/podcasts/45279c3a-c09f-47d1-a3a3-88e6e2507230/watch-dem-thrones-by-black-with-no-chaserIHeartRadiohttps://www.iheart.com/podcast/269-watch-dem-thrones-by-black-101286659/?cmp=android_share&sc=android_social_share&pr=false#gameofthrones #demdragons #blackwithnochaser #houseofthedragonhbo #dragonseeds #theblacks #thegreens #houseofthedragon #youtube #targaryens #podcast #podsincolor #applemusic #spotifymusic #podsincolor

Spoilers, profanity, Jaime x Brienne. Dany's in Yunkai, but none of us know why. Daario needs Coco Chanel's sartorial advice and we are so questioning Dany's taste in men. Game of Thrones. A Song of Ice and Fire. A Storm of Swords -Daenerys IV.   Close The Door And Come Here - Episode 492

This is an episode that starts and finishes with scenes involving swords. Tywin Lannister kicks things off with the two swords he had forged from Ice, Ned Stark's large Valyrian steel sword. He then awards one of these swords to Jaime Lannister, in exchange for him leaving Kingsguard and ruling Casterly Rock. Tyrion Lannister welcomes Prince Oberyn Martell of Dorne to King's Landing ahead of Joffrey Baratheon's royal wedding. Sandor "The Hound" Clegane and Arya Stark are on another road trip when they stop at an inn on their way to the Vale. They run into Polliver and his crew and all hell breaks loose. Arya is again reunited with Needle. Jon Snow is interrogated by the Night's Watch council. Across the Narrow Sea, Daenerys Targaryen marches with her army to Meereen. Also in this episode Shae carelessness gets her found out, Jaime goes gold, and we get a new Daario.....TO WATCH AND SUBSCRIBE:Facebook:https://www.facebook.com/blackwithnochaser/Twitter:https://twitter.com/BeBlackNoChaser?t=pVFV06lBFdZRu72ot4uCjA&s=09Twitter:https://twitter.com/WatchDemThrones?t=q0ngrYPlugf0ttzM2jo39A&s=09Apple Music: https://podcasts.apple.com/us/podcast/watch-dem-thrones-by-black-with-no-chaser/id1641754247Spotify:https://open.spotify.com/show/1qI1bJ1vIlobu502w6zrtN?si=mtsa3gZYRZW_3FmlCrv7UgBWNC RADIO: https://apps.apple.com/us/app/bwnc-radio/id6443800363Amazon Musichttps://music.amazon.com/podcasts/45279c3a-c09f-47d1-a3a3-88e6e2507230/watch-dem-thrones-by-black-with-no-chaserIHeartRadiohttps://www.iheart.com/podcast/269-watch-dem-thrones-by-black-101286659/?cmp=android_share&sc=android_social_share&pr=false#gameofthrones #demdragons #blackwithnochaser #houseofthedragonhbo #dragonseeds #theblacks #thegreens #houseofthedragon #youtube #targaryens #podcast #podsincolor #applemusic #spotifymusic #podsincolor

In the episode, Tyrion Lannister and Sansa Stark get married in King's Landing; Gendry arrives at Dragonstone with Melisandre; Stannis Baratheon frees Davos Seaworth from the dungeons and reinstates him as his Hand; Arya Stark and Sandor "The Hound" Clegane travel through the Riverlands on their way to the Twins; Samwell Tarly and Gilly camp north of the Wall and gets an unexpected visitor, and Daenerys Targaryen meets with the mercenary company of the Second Sons before the walls of Yunkai where we meet Daario...TO WATCH AND SUBSCRIBE:Facebook:https://www.facebook.com/blackwithnochaser/Twitter:https://twitter.com/BeBlackNoChaser?t=pVFV06lBFdZRu72ot4uCjA&s=09Twitter:https://twitter.com/WatchDemThrones?t=q0ngrYPlugf0ttzM2jo39A&s=09Apple Music: https://podcasts.apple.com/us/podcast/watch-dem-thrones-by-black-with-no-chaser/id1641754247Spotify:https://open.spotify.com/show/1qI1bJ1vIlobu502w6zrtN?si=mtsa3gZYRZW_3FmlCrv7UgBWNC RADIO: https://apps.apple.com/us/app/bwnc-radio/id6443800363Amazon Musichttps://music.amazon.com/podcasts/45279c3a-c09f-47d1-a3a3-88e6e2507230/watch-dem-thrones-by-black-with-no-chaserIHeartRadiohttps://www.iheart.com/podcast/269-watch-dem-thrones-by-black-101286659/?cmp=android_share&sc=android_social_share&pr=false#watchdemthrones #gameofthrones #demdragons #blackwithnochaser #podcast #podsincolor #humor #jokes #spotify #applemusic #youtube #HouseOfTheDragonHBO

Daenerys surveys the Yunkish host awaiting her. She meets with, then offers deals and deadlines to, the leaders of the enemy force. She makes a possible new friend, berates an old one, and gets a history lesson about her brother Rhaegar. Simon and Mackelly ponder buyer's remorse with sellsword armies.Chapter Review:Daenerys Targaryen surveys the host awaiting her own outside the gates of Yunkai. She asks Ser Jorah Mormont to invite the leaders of the three factions of the force to meet her in her tent, spreading out the meeting times so she can meet with each group separately. She offers the sellsword company the Stormcrows an alliance, wanting an answer the next day. She offers the leader of the sellsword company the Second Sons a wagon of wine to consider joining her side, again wanting an answer the next day. Finally, she offers the Yunkai envoy three days to send out every slave in the city loaded down with goods and gold. If they do as asked, they and their city will be spared. When the men have left, she tells her council that they'll attack an hour after midnight, while the enemy are distracted by her offers.Later that night, Daario Naharis one of the leaders of the Stormcrows is found in camp. He tells Dany the Stormcrows are hers, as is he. Jorah is uncertain of the man's intentions. Dany disregards Ser Jorah and sends Daario back to prepare his men to turn their cloaks when the battle begins. She then lashes out at Jorah for pushing all other men away. She loves and respects him, but does not desire him.As the battle begins, Dany and Arstan Whitebeard pass the time discussing her brother Rhaegar. Their conversation is cut off by the news of their victory against the Yunkish force. The Stormcrows fought on Dany's side, as Daario promised. Three days later, the slaves of Yunkai are freed. As they exit the city, the begin chanting “mother” to Dany.Characters/Places/Names/Events:Daenerys Targaryen - Last remaining descendent of the royal Targaryen line, Stormborn, Mother of Dragons, claimant to the Iron Throne of Westeros.Ser Jorah Mormont - Exiled former Lord of Bear Island. Daenerys' bodyguard and loyal advisor.Unsullied - Eunuch slave soldiers. Renowned for their fighting prowess. Arstan Whitebeard- Westerosi squire of Strong Belwas. Sent by Illyrio Mopatis to bring Dany to Pentos.Daario Naharis - Leader of the sellsword company the Stormcrows.Second Sons - A sellsword company in Essos.Yunkai - A city in Slaver's Bay known for training bed slaves. Support the showSupport the podcast. Buy a bit of merch from our store. Or if swag is not your bag, buy us a Cup of Arbor Gold.If you like what we're doing, please consider rating and reviewing us at Apple Podcasts, Spotify, podchaser.com, and anywhere else you can leave a rate and review.Join the discussion on our Discord server! https://discord.com/invite/FTy7BExyBQWe'd love to hear from you. Send us an email at ghosts.harrenhal@gmail.com. Also, follow us on Twitter @GhostsHarrenhal, Facebook, Instagram, and YouTube.All Music credits to Ross Bugden:INSTAGRAM! : https://instagram.com/rossbugden/ (rossbugden) TWITTER! : https://twitter.com/RossBugden (@rossbugden) YOUTUBE! : https://www.youtube.com/watch?v=kthxycmF25M

This illustration of Daario is one of the few I've seen who matches his description and still manages to make him look appealing so that Dany's fascination makes a little more sense. It's by naomimakesartand you can see it here! https://www.deviantart.com/naomimakesart/art/Daario-Naharis-815729845These chapters are the ones where Daenerys attacks Yunkai, and Arya runs from the Brotherhood and gets gripped up by The Hound!Credit to MetroGnome for the theme song, you can download it free and listen here! https://www.youtube.com/watch?v=XA6a7sYKeeAIf you'd like to join our Discord and get in on some of the convo, check it out here! Non-patrons welcome! https://discord.gg/rEF2KfZxfV

Tyrion strikes a deal. Jorah and Daario undertake a difficult task. Jamie and Cersei try to improve their situation. Support us on Patreon at patreon.com/dragonsdreadforts Find us on Instagram @dragonsdreadforts

We're officially here, the beginning of the end. It's been a fun road on Talkin' Thrones, but it all must eventually come to an end. So here we are with the premiere of arguably the biggest and most critically acclaimed season of the show, the big one, the one that gave us Battle of the Bastards, the one that surpassed the books, it's the Season 6 premiere, entitled "The Red Woman." Despite a very rushed and completely out of place, not to mention horribly mishandled exiting of Dorne from the main storyline, the premiere picks up right after the events of last season, showing what's happened to all the characters after the meriad of cliffhangers after Season 5. The remaining Night's Watch members loyal to Jon along with Ser Davos must figure out what to do in the aftermath of Jon's death and Ser Alliser seizing control of the Watch. Ramsay picks up the pieces after the victory over Stannis and is chastised by his father for losing Sansa. Sansa & Theon are quickly caught by Ramsay's troops until an unexpected save from Brienne and Podrick. Jaime returns to King's Landing and vows to help Cersei take back what's been taken from them, while the High Sparrow starts to play the game. Arya is beaten on the streets, helpless and blind, while Tyrion casually wanders the streets in a storyline that by all right should be awesome, him ruling Meereen, but instead plays out like just spinning its wheels until they can get Daenerys back. Speaking of Daenerys, Jorah & Daario are hard after her, while she finds herself right back where she started with the Dothraki. In a rather shocking and abrupt final moment meant to further emphasize what Melisandre is capable of, we discover her take off her jeweled pendant, revealing her true, ancient form. It's a jam packed premiere that's setting up for a hard and fast paced season that's going to result in an explosive climax, and you guys can keep up with all of it right here on the #talkintvpodcast --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/talkintvpodcastgmailcom/support

We've reached it, another finale to probably our most problematic and least enjoyable season of the show yet. Season 5 ultimately proved to be a severe downshift for the show, as this was the full transition away from the books, away from the awesome character moments and amazingly well thought out story decisions that carried the first four seasons to make something that truly earned its spot in the prestige TV hall of fame. Then with this season, to quote Professor Pat, just became another show. An exceedingly well made show, but just another show nonetheless. This finale "Mother's Mercy" is a cap off of that transition, with several moments that were extremely shocking and provoking in the moment, but have lost their steam with the benefit of hindsight, and others that just felt like quick wiffs to set up for what was coming next. Stannis is ultimately defeated both on the battlefield and in his moral compass, and meets his death at the hands of Brienne. Sansa & Theon escape Winterfell in a moment that felt a little too convenient to the plot. Jon is betrayed, stabbed and left to die by the brothers of the Night's Watch. Arya kills Meryn Trant, but is chastised by the Faceless Men for taking a life that wasn't hers. Jorah & Daario set off to find Daenerys, who finds herself at the mercy of the Dothraki, while Tyrion is left in charge of Meereen. Jaime leaves Dorne with Myrcella and tries to come clean to her, only for her to die in his arms. Cersei atones for her sins by committing a walk of penance, naked, across the city. We begin the final phase of the journey next week with the premiere of Season 6, so be sure to keep tuning in for new episodes of #talkinthrones released every Friday, only on the #talkintvpodcast --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/talkintvpodcastgmailcom/support

Tyrion enlists an unlikely ally. Daario entreats Dany to allow him to do what he does best. Jon's warnings fall on deaf ears. Support us on Patreon at patreon.com/dragonsdreadforts Call our hotline (352-541-2409)‬ and leave a voicemail with any corrections, thoughts, theories, or just your loving support! Find us on Instagram @dragonsdreadforts

We're in the back half of Season 4, and boy is this season rear loaded as we cover season 4, episode 7, entitled "Mockingbird" after Littlefinger's house sigil. We always get at least one of these episodes per season, where the episode is primarily set up, but Benioff & Weiss pull out all the stops to give us scene after scene of incredible writing and insanely captivating character moments. Tyrion's on the hunt for a champion for his trial by combat, after Jaime & Bronn both turn him down. In Meereen, Dany gives into her lust for Daario while also satisfying Jorah. Arya & the Hound continue to discover the horror that is the result of the war, while Brienne & Podrick discover another clue to Sansa's whereabouts. Melisandre tempts Selyse, while Jon continues to feud with Ser Alliser as to how best defend the wall. Finally, at the Eyrie, Littlefinger is forced to make a spur of the moment decision when Sansa's life is threatened. Dom & Pat are covering every episode up until the finale, every Friday on the #talkintvpodcast Spotify feed. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/talkintvpodcastgmailcom/support

Robb presents himself to Walder Frey; Edmure meets his bride; Jon faces a harsh test; Bran discovers a new gift; Daario and Jorah debate; House Frey joins with House Tully. Support us on Patreon at patreon.com/dragonsdreadforts Call our hotline (352-541-2409)‬ and leave a voicemail with any corrections, thoughts, theories, or just your loving support! Find us on Instagram @dragonsdreadforts

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

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

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

Chad and Anthony argue over the (first) Clegane Bowl. Steve hates the new Daario actor. Anthony talks about a medieval king who was deposed from his throne for obesity. Theme song: Game of Thrones (80's TV Theme) by Highway Superstar Hey there! Check out https://support.baldmove.com/ to find out how you can gain access to ALL of our premium content, as well as ad-free versions of the podcasts, for just $5 a month! Join the discussion:  book@baldmove.com | Discord | Reddit | Forums Follow us:  Instagram | LeDonneBooks.com Anthony Le Donne is the co-author of the following books: Gods of Thrones, vol. 1: https://www.amazon.com/Gods-Thrones-Pilgrims-Guide-Religions-ebook/dp/B07JLNZB9G Gods of Thrones, vol. 2: https://www.amazon.com/gp/product/B07Q8G7K9G Leave Us A Review on Apple Podcasts Learn more about your ad choices. Visit megaphone.fm/adchoices

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

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

Hello, everyone, and welcome back for season 4! This week, we've got Prince Oberyn breezing into the show like a sexy hurricane while the Lannister family continues to allow petty squabbles to spoil the victorious atmosphere after the Red Wedding; Sansa gets a visit from Ser Dontos. Up at Castle Black, Jon's finding his inner Ned while Ygritte and Tormund begin their long wait for Mance's signal. Daenerys has a new Daario to look after on the road to Meereen. And in the Riverlands, The Hound has come to kick ass and eat chicken, and he successfully manages to do both of those things. Eric Nolan on Nerd Soup: https://www.youtube.com/watch?v=T_mHrAxNSPc Edward Thomas music: https://edwardthomasuk.bandcamp.com/

Graduation season is here! Whether your young adult is just out of high school or completing a college degree, there's a lot to consider when it comes to diabetes. We've got a roundtable discussion with a lot of frank talk about T1D in college. Recent graduate Shay Webb and college senior Haley Owens talk about everything from what to do when a professor doesn't care about accommodations, to deciding how visible you want diabetes to be, to what they want parents to know. We're also joined by Anna Floreen Sabino of the College Diabetes Network. Webb and Owens are both CDN NextGen Fellows.  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  0:27 This week, lots of graduations this time of year and whether your young adult is just out of high school or completing their college degree. There's a lot to consider when it comes to diabetes.. Frank talk about T1Din college.   Shay Webb  0:41 Sometimes it's the people you don't expect to pick up on things who actually picked up on it rather than the authoritative figures who you're expected to report to don't always want to pick up on it or want to actually have responsibility for it because they feel like if they have responsibility for it, that's their liability when in reality, it's your diseases your body. We just need your ally ship.   Stacey Simms  1:06 That's Shay Webb she graduated last year Shay and Haley Owens, a college senior. Join me in a conversation about everything from what to do when a professor doesn't care about accommodations to deciding how visible you want diabetes to be to what parents need to know. 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 are glad to have you along. You know we aim to educate and inspire about diabetes with a focus on people who use insulin. Most of you are very familiar with my family's story. My son was diagnosed with type one, right before he turned two he is now 16. My husband lives with type two diabetes. I do not have diabetes, and my daughter doesn't have diabetes. My daughter is 19. And she just finished her sophomore year of college. So she is home. She's been home for a couple of weeks now. And so we've moved through what I call the re entry phase. I used to call that to when they came from Camp, the re entry part of coming home. It's always an adjustment for everybody. But she's doing great. And you know, we're just starting now to think about college for Benny. He's done with his sophomore year of high school, and even a little early yet, but you know how it goes the pressure High School is is just bananas. So we've really tried to avoid that. But he has started taking a couple of those, you know pre ACT PSAT kind of things and thinking about the process. Some of you are scolding me saying it's never too early. But I think our attitude has always been he'll figure it out as we go. And of course, though, in the back of my mind all of these years has been diabetes at college. And I'm still trying not to think about it too much, frankly, I know he's gonna do well, I know we're gonna give him all the independence that he has needs he wants, but it still makes me a little bit nervous. So that's why I really excited to know about the college diabetes network and I plan to use all of the resources I possibly can. And to that end, we have a great roundtable for you this week, covering a lot of issues pertaining to school. This is a longer than usual interview, so I'm going to try to get right to it here. So you will hear from Haley Owens. She was diagnosed with type one at the age of nine. She's in her senior year at the University of Maryland, Baltimore County. She founded the college diabetes network chapter there in 2018. And she's been on the executive board ever since she's spending the summer at Camp Possibilities diabetes, sleepaway camp. It's her 10th year attending. She's actually the program director there now. You'll also hear from Shay Webb. She's lived with type one for almost 15 years. She's a recent graduate from University of North Carolina Wilmington. And she's got a Bachelor of Science in clinical research. She was the founding vice president of the CDN chapter at UNC Wilmington. And you'll also hear from Anna Floreen Sabino part of the leadership of CDN she lives with diabetes herself and like me as a graduate of Syracuse University, we like to work that in whenever we can. All right, all of that is coming 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 people 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 V 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. Haley and Shay and Anna, welcome to the show. I'm thrilled that you could all be here. Thanks for coming on. Thanks for having us, Stacey. Awesome. Thank you so much. Yeah, we're glad to be here. And uh, let me start with you as we look ahead Your word this very unusual for most school year is over, how is CDN doing? What are you talking about for the summer that looking ahead to the fall?   Anna Floreen Sabino  5:10 Well, I think I mean, for those of you who don't know, college diabetes network is we are 10 years old now. And we are a nonprofit organization that is really focused on providing, you know, peer support and programs and resources for young adults with C one D. And I think the key there, especially this year is around peer support and maintaining as much connectivity despite the craziness of the last 18 months and more to come, I'm sure for college students especially. So CDN is an org is really focused on you know, how do we constantly stay in the loop on what's happening and making sure that we're really listening to our students, and our parents and all of their, you know, ecosystems that surrounds them to make sure that they're safe and equipped and prepped for what's to come, whether it's transitioning home, figuring out finals, interviewing for a first job over zoom, we're right there with them. And it's so excited to be overseeing this brand new fellowship program that both Shay and Haley who are joining us here today are a part of, and one tiny little silver lining to this whole thing is that this program wouldn't exist in the capacity that it does now, if we didn't have COVID. So it's been a joy to get to know the 20 fellows who are part of this program. And and hopefully it will continue. I'm curious,   Stacey Simms  6:33 no, what do you mean, it wouldn't have happened like this would change.   Anna Floreen Sabino  6:37 So traditionally, CDN has been very, very fortunate to bring several students couple dozen to the big diabetes, you know, national conferences each summer, the ADA Scientific Sessions, you know, at CES geared towards, you know, diabetes educators, as well as the friends for life conference in Orlando. However, this year, we decided, instead of having multiple different cohorts to combine the cohort into one and offer a weekly series of leadership development workshops, and have one cohort over the course of say seven months where they get to know each other, learn a bit about some professional development and skill building be matched with a mentor. So it's just a little bit more of a robust, kind of a more flow type of a program and less stagnant. But it's been wonderful to be able to build I think, further relationships with each of them, rather than just kind of a weekend long burst of information gathering and sharing. Before we jump into all our topics. Let's just do quick introduction, a little bit. Shay, tell   Stacey Simms  7:37 me a little bit about CDN and your college experience you have graduated us here in North Carolina. Tell me about starting CDN,   Shay Webb  7:45 I saw the disparity on my campus, and I really wanted to change things. So it was around my first year of college. And I say first year because I was actually an early college student. So my first official year of college that I noticed there's nothing on campus that really talks about the advocacy for diabetes. So I reached out to the liaison for CDN, or at least for our region of CDN at the time for lessons change. And I told him that I wanted to create a chapter. And honestly, it kind of stemmed from this idea because I had another friend, and she had just created this beating club. And I'm like, wouldn't it be cool if we combined all of our clubs and our ideas, and we had like this healthy, diabetic friendly potluck or something around the holidays, and I'm like, this would be a perfect event for CDN. And at the time, I didn't really know about it, but doing my research, I'm like, this is perfect. And then my mom, in addition was like when you get to college, you know, look into this stuff. Because it's out there, people just might not know about it. I reached out and I created my chapter of CDN, which is called dubs for diabetes. Because we are at UNC W, University of North Carolina Wilmington. And at first, it was really hard to find participation because when my chapter started, Hurricane Florence hit North Carolina. And that was very detrimental for a lot of people. So we started school year off and then we didn't come back until about three months later. So some time later, another student wanted to create a chapter but he didn't know that one had already been established. So he had a registered student organization. And I had a chapter. So we all came together and put our heads together. And that's for diabetes was born.   Stacey Simms  9:33 And then Haley, tell me a little bit about your experience are you are graduating this year.   Haley Owens  9:37 So I'm a senior and I think I'll be a senior for another another year. Yeah, so college for me was just really interesting. I mean, so I've had diabetes since I was little. So I entered my college experience, also as an individual living with type 1 diabetes, and I've been fortunate enough to have had the opportunity to connect with larger populations and community to us that also have this commonality of diabetes. And I've worked within the diabetes sector through a nonprofit. I've been really fortunate enough to have community on my side. But similar to Shay, I think I saw the disparities on my campus. And I saw, interestingly enough, I think it was the first year of my college experience I was walking around, and I just was noticing all of the people who had CGM Zhan and pumps on and I was like, This is so radical, because I would usually be the only one with these technologies visible. And people would say, Hey, here's a pager, what's that? You know, what kind of cool devices that so I was like, this is really awesome. And the inspiration for me was that I loved and I still love working with the diabetes community. I love working with summer camps for children with diabetes, and a part of one today as a, as a counselor,   Shay Webb  10:51 I really wanted to bring that community aspect to the college campus as well for all of the students who were living with type one or any other form of diabetes, because that was a little bit of a nuance that I made to my chapter was that I said, I really would like to recognize all forms of diabetes, not just type one. That's interesting, what Haley was saying how, you know, she would see different people in CD ends and insulin pumps and everything on campus, because I still remember there was this girl who I was friends with for a while. And we had a mutual friend who threw a birthday party, like a birthday dinner one night, and I came and I was wearing a shirt and it didn't have sleeves or anything. So you could see my CGM really well. And she just sits down beside me. And she just starts rattling off. So it's not the freestyle, and I'm like, um, yay, it is. How do you know this? And then she just started talking to me about everything and how long she had it in her insulin pens. And I'm like, Are you serious? Like, this is not good. But this is like really dope right now. I'm super excited to see no idea. And I'm like, sitting there supersized. And they're like, What are you so happy about? And I'm like, Listen, I can't even explain it, because you won't get it. But it's super awesome.   Stacey Simms  12:05 You know, it's funny. And Anna, let me bring you in on this. One of the topics that we had put aside to talk about kind of how diabetes can be invisible, right? how a lot of people don't see it. And yet, we've already started talking about how you spotted each other. Obviously, not everybody's walking around with a sleeveless shirt, and a CGM. When we talk about not being seen, I imagine that for most young people, it's not always a question of hiding those things. It's just or maybe it is, but I'd like to hear that for both of you all, but to me, it would be more of not announcing them. Does that make sense?   Anna Floreen Sabino  12:38 Absolutely. And I think one of the things that and I've had type 1 diabetes for over 30 years now. So I think both of us eat. But I think one of the things that I've realized even as I have, I don't want to say the word aged but but gotten older, gone through college grad school started a family is that the burden of self advocacy and the invisible load that people living with a chronic illness, like type 1 diabetes is never ending. And, you know, for parents who are listening who have those in high school, Hi, I'm Stacy. But it's constantly there. I mean, just a few seconds ago, my insulin pump was was beeping, I was on mute, but you couldn't hear it. And I've got a low battery and low reservoir. And although I'm going to continue on this podcast, and you know, continue out my day, it's a reminder that I am different, and I have to pay attention to this or else and it's that it's the weight that is there, the invisible. There it is, again, the invisible worry that if I don't do this, then that and it's a reminder that you are being reminded to, you know, take care of behaviors that are both dependent on your acute and long term success. And I think for you know, young adults, especially entering college, a lot of that burden is now for the first time on the student themselves. And especially when you're constantly navigating, meeting new people, and many of the students that either start chapters are coming to college, where everyone around them just knows, you know, they've been in a very similar K through 12 school system, or they, you know, they've been the kid with with the pump at school, where it's just their best friends know, and I think I realized when I was a freshman, that it takes years to build friendship and a long time and it's not like you're gonna offload your life about diabetes and all the teeny weeny details that go with it. It is really isolating, especially now with with COVID to constantly kind of pack and unpack the invisibility of diabetes like all day, every day. So my advice for parents listening is to really start having those conversations in high school, you know, not two to three months before you're going off to school. ask them some questions talk about how you're feeling. Talk about how you're going to have those conversations. It's really, really hard. But I think it's so important to just be honest. How can I help you? What do you need for me? I'm here if you need anything, because I think it's the person living with diabetes is just there's so much weight physically and emotionally on their shoulders.   Stacey Simms  15:18 She let me go to you on that. When you're hearing her say have those conversations in high school? Is that what you would tell teenagers parents now?   Right back to Shay and Haley answering that question. But first Diabetes Connections is brought to you by Dario Health. Bottom line, you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us with that and that he understands the plan has to change. As Benny gets older, you want that kind of support. So take your diabetes management to the next level with Daario 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. Now back to Shay answering my questions about whether she'd recommend having conversations about advocacy with high schoolers.   Shay Webb  16:27 I would and I wouldn't at the same time. And I say that the say as Anna and Haley No, I was taught at a really young age, I had to start having those conversations when I was in elementary school, I would be that fourth grader. You know, my mom would stand behind me and I go up and tell them okay, this is my insulin pump. Okay, this is what a blood sugar kit is. And it's like I tried it felt scripted at first, like, Okay, this is what you say, this is what you show. But as you keep on growing and maturing and getting older and getting exposed more, it'll flow like clockwork, in a way. So the by the time you get to college, you get around your professors, you get around your arrays, you're not as intimidated, because you've done it for so long. And I also think the you know, the younger you started, the more comfortable you are when you start the better. And that's to say even though you're doing that, and you're advocating you're telling people what you need, you're also influencing someone else who's watching you from the sidelines. And you don't even know it half the time until later. Sometimes you don't ever know it. But like analysts saying diabetes can be really hard to unpack sometimes having someone there as that model as that guide to say, Okay, I guess this is acceptable to do especially growing up as a teenager as a preteen where you have all these peer pressures, or this doesn't look cool, like this looks cool. Be that model. You don't have to exactly be the extrovert or the person who's in front of everybody. But just find ways that you feel comfortable to express your advocacy in different ways that you can get your needs across. And if you get yours across most likely it's going to help someone down the line who hasn't even thought of those things yet.   Stacey Simms  18:09 Haley, I'm going to ask a slightly different question. As Anna alluded, my son is a sophomore in high school, he is 16. He was diagnosed he was two. So he is very independent. He is very used to talking about these things. But I do think college is different. I do plan on having these conversations with him. I do anticipate him saying, Mom, I do not need this. You know, Mom, I don't need this. I don't need you to talk to me about this. I roll I roll. So Haley, let me ask you, there's a difference between an eight year old all due respect Shay, or you know, a 10 year old saying, here's my pump, I'm cool, right? And then a 17 year old or an 18 year old going I'm so sick of this diabetes, crap, I'm going to college and nobody needs to know. Right? So you know, what do you tell students like that?   Haley Owens  18:48 Well, it's really difficult, right? Because I know people in their late 20s, who still have that attitude that they do not want to share or disclose any information about their diabetes. And there's no one right way to do self advocacy with diabetes, because I think what self advocacy largely depends on is Ally ship and what you're ultimately asking people on the receiving end of that conversation is will you be my ally? And that's a consensual question. That's a conversation that people can say yes to or they can say no to. And I know of a lot of younger children who are excited about diabetes, and I have the same attitude. I love diabetes, and I hate diabetes. Right. I love it because of the community. I love it because of the advocacy. I love it because of the resiliency. And I hate it because of all of the I think the hurt that goes along with it. Right? That's there is no you're not going to deny that to I think go back to your question though. You know, I think a lot of parents will say it was the same way from you Shay, to you know, like when I first went to school, I went back to school after getting diagnosed. My mom is a nurse right? So she said like, when you go up to your teachers, I want you to say I'm a diabetic And here's my supplies. And here's what you should look out for when I'm low or when I'm high. And that conversation was largely geared towards teachers. And I think for the most part, they saw me a nine year old child and said, you know, of course I would do that, right. And as you get older, I think sometimes the disease itself wanes on you, and it wears on you, and you don't want to be as visible about it, and you don't want to disclose that you have it. I also think that ally ship looks different when you get older, because people assume, yep, there's my pump, too.   Unknown Speaker  20:31 I was gonna yelling,   Stacey Simms  20:34 excuse me, I was going to mom, and I wasn't gonna yell it was muted.   Haley Owens  20:42 I had some coffee. And let me just say like, coffee is like a whole other conversation to have. It's like the worst. But anyway, so I like shit looks different when you get older. Because I think that people start seeing you more as an adult, and assume that you know what you're doing, and assume that you should be taking care of yourself. And they assume that this is not my responsibility. That's your responsibility, right. And I have been in situations where people do not want to know about my diabetes, I've disclosed that I've had it to them. And they say, I don't want to part of it. I've had other people in my life who have said, this is great information. Thank you for telling me and they start carrying candy in their book bag, and they start checking it with me each day. They're like, Hey, how you feeling? I'm like, I'm feeling Okay, thanks for asking, right? Because I know where that question is coming from. So I know where parents are coming from when they encourage their child to start advocating for themselves. Because I think that largely, it's coming from a source of peace of mind for them. And safety, you know, that as long as my child is disclosing this information that they're going to have people watch out for them, and people will know about it. And it's largely a safety thing, right. But I think to your children also have this gut feeling about who will come to the frontline when they are in trouble, and who will be there to be their support system, or who is around them that will judge them. And so I want to caution parents not to I think try to force self advocacy on their children, because I think that that will largely come very naturally, as your child starts to develop and get older, and starts to develop their identity with this disease. And I think ultimately, your child has a deep down gut feeling about who they want to tell that they have diabetes, because they know their support group best. They know the people around them best and they know who will support them, and who will not support them.   Shay Webb  22:34 I can completely agree with Haley because I've personally seen it where I've gone up to you know, teachers or professors trying to explain to them and the responses I've gotten were okay, you need to take that up with DRC and the Disability Resource Center. And before I can show them anything, they're like, Okay, I have to go to office hours, whereas I have friend, right, I've met in college, and they could call me and I'm like, Hi. And they're like, what's wrong with your blood sugar? And I'm like, I'm there like, no, you're not, I can hear it in your voice. And   Unknown Speaker  23:04 I'm like,   Unknown Speaker  23:05 Am I home? Why?   Shay Webb  23:08 And it's like, sometimes it's the people, you don't expect to pick up on things who actually pick up on it, rather than the authoritative figures who you're expected to report to, don't always want to pick up on it, or want to actually have responsibility for it. Because they feel like if they have responsibility for it, that's their liability, when in reality, it's your diseases, your body, we just need your ally ship, we need you to be sponsors for us in places that we can't be actually be support. Going back to your point of being invisible. I think that's where some of it comes in, as it's not exactly always invisible to us. But other people try and make it invisible as well. So they make it seem like okay, it's the invisible disability. So you're going to be like the normal student who can do everything who's going to get the assignment done on time, you don't need extra time. You're just in that category, because I don't see what's wrong with you. It's like the wilted flower category, you see a perfectly standing flower, but it hasn't had water. It hasn't been taken care of. And it's just like wilting on the inside and people don't see that Shay,   Haley Owens  24:17 Can I just add one thing too, because I think Shay, like so many nails were hit on the head and that lovely statement, because I agree with everything you just said. And I really think that when people label diabetes. Uh huh. Sorry, when people label diabetes as an invisible illness, I don't think they truly understand because I don't even label this disease as visible because it's not because anybody who has been around this disease for long enough knows that this disease lives on a spectrum of visibility. There are some days where I probably look and I probably act like everybody else, and there's days where I am absolutely exhausted, mentally, physically and mentally. blood sugars are all over the place. And I'm low. And I'm not myself. I've had many conversations about this where people almost want to categorize me and say like, it's not that bad, or diabetes is not that bad, because it is so invisible. And I have to kind of check people on that rhetoric and say, that actually is very ablest, you know, like, I have to check people and say, it's not invisible to me. But diabetes does live on this spectrum. And it's not stagnant. I don't act and I don't perform, and I don't, I don't do things the same way with diabetes each day, it's not a disease that I just take a pill or I just do one thing. And then it's good, right? It's it lives on the spectrum, that's always changing day by day, and it affects my mood, and it affects my emotions and affects my ability to perform. It's not always invisible, like what people, you know, assume it to be,   Stacey Simms  25:49 and I love you, for you back in. Because from a parenting perspective, Shay and Haley have said a couple of things. Frankly, that makes me a little bit nervous. And I'd love to know how you would help students not necessarily parents advocate for themselves, if they have professors, or they run into staff who beyond not wanting to be an ally, doesn't want to hear it. I assume that CDN, even if there isn't a chapter on whatever campus students are, there are resources or best practices. But no, what do you do if you come across somebody who just says don't want to hear it? Sit down? You're not even in my class?   Anna Floreen Sabino  26:23 Yeah. I mean, and honestly, you know, we CDN has a pretty active parent Facebook group, and a lot of people, you know, roll their eyes at Facebook, or there's just it's this constant back and forth of of conversation. But I will say that the parents of the college diabetes network, which is the name of our parent, Facebook group is awesome. It is a lot of conversation. It's a lot of support, does anyone have an endo? And I know we're supposed to be talking about students. But I will say that accommodations, and is probably one of the most asked about topics. So you're you're right there, Stacy, in terms of, you know, talking about self advocacy and ally ship around people getting backlash and potentially discriminated against on college campuses, CDN recognizes this, and we realize that, you know, not everybody to Shea's point is going to be that look at me, I have diabetes, I'm going to change the world because of my diabetes, attitude. And because of that, we want to make sure that we can, as an organization, reach, you know, all young adults and keep all young adults safe or as safe as possible while they're on campus and preparing for that campus life transition. So we have turned some of our resources into what we call a reach initiative, which is a slew of resources geared specifically towards, you know, Office of Disability and accommodations, health center and Counseling Center, we know that the majority of our students, you know, don't necessarily utilize the health or Counseling Center for their primary, you know, diabetes care, and that's fine. But we do recommend that the health center on the receiving side, you know, is up to date, and well equipped and prepared to serve the students when they're coming on campus. Because that we know that they're not necessarily required to take, you know, a diabetes class, you know, every year where I remember going to the health center being like, why is that? What is that beep Oh, is that your cell phone or your pump? I'm like, well, it's both. So it's that constant level of burden of education. And that is kind of what I'm talking about in terms of the invisibility and that that Wait, we always recommend students register for accommodations. And even if you don't end up meeting it, you know, it's like, kind of having car insurance, or health insurance. You know, it's kind of that in the back pocket or that letter when you first take your first airplane ride or your prescription on the box of that humalog vial for those just in case moments. And you want to make sure those are in place. And what I've realized, too, is that there's always going to be people in your life, whether it's a professor, whether it's a friend, whether it's a future boyfriend, or girlfriend or partner, that may say things to you that are just crappy, and maybe they're not going to be your ally. But if we reframe it and turn it around into, okay, what knowledge and resources do I have in my pocket where I could better advocate or better educate, and that's why the registering for accommodations right out of the gate is really what we encouraged for both parents and students to feel better equipped and more comfortable and building that sense of community and ally ship as soon as they get to campus. So for parents and you know, high school seniors, and even college seniors who are looking to find a job or a summer program or internship to get involved in start thinking about what those points are, you want to kind of discuss in in talking about getting accommodations or talking about your diabetes and what your needs are well in advance. On that note, Shay, you've   Stacey Simms  29:55 graduated Haley, you're going to graduate soon. I was wondering if You could take a look back over your time in college and kind of think of a time where it didn't go well, you know, where somebody didn't help you where you had to find a workaround with diabetes. And even if it didn't work out perfectly, in fact, it's better if it didn't, in my opinion, I'd love to hear about what you did.   Right back to the conversation, but first Diabetes Connections is brought to you by Dexcom. And Dexcom has a diabetes management software called Clarity. Do you use this for a long time, longer than I would like to admit, I thought it was something just our endo could use. But it's really helpful. And now I have it on my phone, you can use it on both a desktop or as an app, it's an easy way to keep track of the big picture. I find I use it when we're adjusting things which felt like it was non stop there for a while. But at age 16, Benny seems to be leveling out on growth and basil rates at least for now, clarity really helps us see the longer term trends and helps us not overreact. The overlay reports help with context of various glucose levels and patterns. And when you share the reports with your care team, it's easy for them to get a great idea of what's going on, and how they can better help. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo. Now back to Shay and Haley answer my question about when something went wrong, Shay starts us back off.   Shay Webb  31:28 So I have a couple in two different categories. And one of them had to what's pertaining to my actual class, and I had been sick the whole week. And when I get sick, my blood sugar gets sick and everything else goes downhill. And we had this really big exam coming up and throughout my sickness, because I've always been someone who's really dedicated to her academics. But throughout while I was sick, I was still continuing the studies still looking at my notes and everything. But it came to the day where I'm like, I'm just wiped out, I really can't do anything. And even you know, some of my classmates and other professors were coming up to me like, okay, I can barely hear you like, This is crazy. But I had that one professor where I had to take this exam. And he's like, Well, no, I'm not changing the exam. There are other students who cheat who do this. And I'm like, Well, I have an accommodation. I was sick. This is the situation. It's not like I was just trying to get out of the test. It's not like I went to the beach all day and didn't study. And they're like, you know, that's just the way it is. So being a CDI advocate, I went to the DRC. And I told them everything that happened, and they reached out to that Professor. And luckily, I was able to take my exam and keep my grades up. But if I hadn't have had that accommodation, which originally, I didn't think I needed it that much. And it definitely took a toll. At least I felt I mean, my grades were still good, but it definitely was that feeling of assurance afterwards. But if I hadn't had that commendation, then I knew it could have been a lot worse. And then fast forwarding to when I lived on campus. And there would be some nights, it seems like everything would just go wrong, where you know, like, okay, there was one day, my Jews, there was like something wrong with this, I had to throw it away. So I'm like, Okay, I'm low. I need juice. But luckily, we have machines in the building. So I go find a machine, and it is completely empty. So I'm like, Okay, cool. So that means madmen, I have to walk to the campus convenience store, which wasn't too far. But I have rheumatoid arthritis, and I have low blood sugar. So that's two things working on me then making it extra hard to do. And I said, You know, I have to tell someone, some type of authority, that authority figure about this problem. And when I did, the response I got was, it was a slew of responses. But the biggest one that I remember is that, you know, universities just aren't disability friendly. And that's just the way it is. And you know, that's not on us. If you want to talk to the people over you know, the school system or over all the policies go talk to them. So as a younger student, and as someone who's you know, already trying to handle her diabetes in college, those kind of like a slap in the face to think that someone who is supposed to advocate for their students who supposed to care for their students would have that type of approach and that type of response. And I made that authority figure aware that especially like for other students like myself, who may come see them, it's already implementation enough to come and see someone have such a position of such power. But to get that response, when you know, you come for convocation, you come for orientation. Everyone says, Come see me if you need me. And then you need them. And it's like, well, I can't help you. And this is why And it's not even the Jets, you know, you can't help me. But for anyone who can't help us with this type of situation, it means more to say, I can't help you. But I'll find someone who can, or I'll find the resources that can rather than saying you're on your   Stacey Simms  35:14 own, Haley, anything come to mind?   Haley Owens  35:16 Yeah, I first I just wanted to Sure. I think all of us because I've had to do this too, when being let down by these big systems because it can feel like betrayal, right? What what this gets to is it feels like betrayal, when you enter a university setting, or you enter the workplace, right? Because this is not isolated to just college or university. And they say, we can't help you. We don't care, right? It feels like betrayal. I want to just address the big elephant in the room. And it's that the question is like, well, who will care about me? Right? Like, what answers Do I have now, if I go now, right. And I think that also, these conversations may also strike up a little bit of fear. And some of the parents listening like, yikes, right. And I want to say that it's true. The transition from elementary school to middle school to high school, the response and the call to action and come to the frontline, that parents and families request of teachers and the educators and the principal's the response is different, right, because those teachers, I think, have some sort of obligation to respond, professors and university not so much. And really, they professors largely are told that if a student has any issues with disabilities, or accommodations, that you just refer them to the Office of Student disabilities. So professors and educators in a higher education setting don't really get involved. And some of them want to help, but they don't know what to do, because we're not given that support. So there's a lot of work that needs to be done in higher education to support students with all disabilities period, there is a lack and there's a need. But yeah, a few things come to mind for me when I was told no, or the door was like shut in my face, and I had to go somewhere else. And one of it was when I first went to college, and I chose to live with like in a normal dorming situation, right? It was like myself and a roommate. And then we shared a bathroom with another two other girls. And I love my roommate, she was so nice and so friendly. And she still is. But the problem was, was that this young woman was nocturnal. She would sleep literally all day, and she would stay up all night and work. And it wasn't because she had night shift or anything like that. That was her schedule. And she would leave the overhead light on, she would refuse to turn it off. And that absolutely just disrupted my whole sleep schedule, I was starting to sleep during the day, I was starting to sleep in between classes, I would sleep through meals, so the dining hall would close. So then I would have to resort to eating something that was like pre packaged. Anyway, what ended up happening was that my numbers were either in the four hundreds, or they were in like the 50s all the time. And I ultimately ended up getting really sick, I just was really, really sick. I gained a lot of weight the first semester, the first half of the semester, and then I lost a bunch of weight. And it just was all over the place. So I was really sick by the time the semester came to an end. And that was the first semester of my college experience. And when I went to the the Office of Student disabilities, and I said I can't do this anymore. I need to single room accommodation. Can you give me something I was told no, because the single rooms were ADA compliant. And they had a limited number of ADA compliant rooms available. And those rooms were kept in reserve for students who were wheelchair bound, or had some sort of external devices to help them navigate across campus. And so that wasn't really for students like me, what they failed to tell me was that there were other ways of getting a single room that was not through the Office of Student disabilities, and that I would have to go through residential life to get that they didn't tell me that. So I was over here for like a month thinking, I can't get out of this situation. I'm stuck here. And there was no communication to these other resources. What ultimately became of that was we had to seek a lawyer to help us because it got to that point to where my liver enzyme level was so high that my doctor was fearful. My liver was just like being overworked. Right. And actually, later on, we found out that that was because I actually had gone into decay. At one point during that semester. We just didn't know about it. But I knew I was sick. I knew I was very sick. So we ended up getting some guidance from a lawyer and they ended up writing a letter to the student disabilities office. And that was the domino effect right there. That was the tipping point where then I was told all of the information that I needed to know to get a single room, but up until that point, the door was in my face, they would not help me. And each time I would reach out to the office. They said we can't help you like there is nowhere else we could go there was but it just wasn't through your office. So that was like the tipping point for me. fidan sounds really hard and really cruel. But I think one of the things that was really helpful for me was that like people believed me. And I believed in myself, like I knew my worth, I knew that I was worthy of this, I needed a single room because I was sick. And I would not take no for an answer, I needed it. And I had to keep going, I had to keep pushing. And what became of that was, I did ultimately get a single room through residential life and getting a single room through the residential life, I was just by chance paired with other students with disabilities on the campus. And I ultimately became friends with three amazing, wonderful young ladies who also have a disability, or multiple co occurring disabilities. And we are each other's allies in this way. And if I have an issue on campus, or I need somebody, I can call them, I really had a wonderful network come out of that situation. And the other thing that I think that is still a work in progress is something that I see all the time is the whole issue with getting a doctor's note, when you're sick. And Shay, you could probably chime in on this too, each time you're absent, or you're sick, they want a doctor's note, each time you miss a lecture, they want a doctor's note, you know how expensive it is to get a doctor's note, it's not easy, right? Because what that implies is that you actually went to the doctor. And everybody knows that, because I don't feel good because of diabetes doesn't mean that I need to go to the doctor, I need to take a day off. And that's what the health care system sets you up to do is, you know, you are individual now living with diabetes, you're going to have a stomachache, you're going to have aches and pains, you're not going to feel good some days, but you know what to do take insulin, do ketones, do all of this stuff. And if it doesn't resolve or get better, then you go to the doctor, right? But the first line of action is not to go to the doctor, it's you figure it out, when educators and professors come to me and say, Hey, you weren't gonna you know, you weren't lecture the other day, what happened? And I say, Hey, I wasn't feeling good. Where's your doctor's note? I do not have one. And I do not need to go to the doctor. And that was something that was briefly addressed with COVID was this idea that to extend grace to students when they're absent, right, when COVID first hit, and we were just going into quarantine students were getting sick. And University of Maryland released a public letter addressing faculty saying, if students are absent, just excuse them, right? Because people are getting sick. And I said, in one of my classrooms, I said, kind of aloud and addressing a whole class of so Wouldn't that be nice if we could always take that same attitude of extending grace to students with disabilities? And we didn't hound them to get a doctor's note each time they were out? Wouldn't that be restorative? Wouldn't that be moving us forward? The other thing I will say is that I think that what came out of this was a life lesson, right? One being No, you're worth two is never settle. Don't take no for an answer. I hope that that was sufficient.   Stacey Simms  42:50 Yeah, well, that's how we get to those life lessons. But Shay, you   Unknown Speaker  42:53 definitely look like somebody out there.   Shay Webb  42:55 Like Haley said, it's interesting. She had a class example. And I had an organization and kind of student or example because I wasn't really involved on campus. And some of my organs, they were based off of participation. So if you didn't show up, you could get fined. So there would be times rather than the professor, or the director addressing me, it would be other students like, Oh, well, you weren't here at such and such time. But you can go to the library or your home. Why is this, we see your car here. And it's like, I can't always be where I need to be because you have to read, like, digest everything, just recollect yourself and get your blood sugar down. Because sometimes, especially if I'd come home from work, and my blood sugar would be high, I just feel like crashing on my bed. And if anyone will tell me anything, it's not like I would be able to comprehend it. And then going to Haley's roommate example, I forgot I had a roommate example like that as well. Because, interestingly enough, but when it all started off interesting, because how the dorms were set up, or they were apartment style dorms. And one side was like a single room and a single bathroom. And the other side had two rooms and one bathroom. So I arranged with the girl who was already, um, thought would be rooming with Well, they were both friends, if it would be okay, if we switched because of my condition and how everything was set up. And she said that would be fine. Well, the day came and she got in there before I didn't already set up even though we had made an arrangement. So that was the first issue. second issue is, as you can see, as you've heard, a lot of times our alarms will go off at the most random of times, whoa, my roommate did not like that I had so many alarms and that I needed to you know, get those in check. And, you know, keep them quiet and I'm like, Well, I can't do that. So I'm not really, really sure what to tell you and pertaining to getting accommodated housing, I had the same problem as Haley. Because before I got to college, I did a lot of research. And I asked them, okay, what's the accommodation for students with diabetes with disabilities. And the response I got was, housing can be really difficult. And we've had diabetic students come in before, but you're probably not going to get any accommodation for it. And that did not make any sense to me, considering one of our first symptoms is frequent thirst and frequent urination. So if you're rooming with two three other people, or sometimes even 12 other people, how are you going to be sure that you have always guaranteed access to what you need. And I don't think that there's enough preparation on that end. So I definitely get Haley's points. And to add to it, I would say, you know, just continue to recognize because people will give you their opinions, and they will give you the policies that are in place. But as a parable that I think about sometimes is if there's a fence, and you can't get to the other side of it, you should move the fence so that it includes more people. So I feel like that should be the same thing with these academic institutions with these workplaces. We have to make it so we can include other people, even though you know, we can't change who they are, we can change the policies in place, we can change up the rules.   Haley Owens  46:28 Yeah. And some people will say, we've had diabetics do this before, and they didn't ask these questions or whatever. I'm not like all of them. I have not like that. And some people really do think that this disease looks the same for everybody. It does not. And so just because somebody says we've had diabetic students before come through this program, and they did really well, doesn't mean anything.   Stacey Simms  46:51 Let me go to you. And it just to try to, I don't know if we can wrap up these amazing thoughts, and all of these great words for the students. But I think the point of it really does change and never ends. You know, I mean, you're going to go to the workforce. We are getting older, I have friends who pointed out to me that there is a now menopause for type one women Facebook group,   Anna Floreen Sabino  47:11 right? I mean, these things never. Well, I think the the message even after just listening to all due to both Haley and Shay is that we are in a constant transition phase. And CDN is focused on a lot of the transitions and really fostering independence for the young adult. And the biggest takeaway message that I got from both of you and that I want to highlight from CDN is that lets you be on be your ally, and part of this journey. And even if you don't want to start a chapter, or you're not ready to register for accommodations, or you're a parent, and your kid just really isn't interested in caring about their diabetes, right now, CDN is here when you're ready, and that independence takes time. Every single person's diabetes is different, whether you use a pump, whether you take 100 units a day, whether you take 20 units of insulin a day. Great point, Haley on the well, this is how I manage my diabetes. And it might be different. There isn't one size fits all, you look at a doctor's note, and there's, you know, 10 different patients with 10 different insulin regimens. So I think that's something just to keep in mind, especially for parents as we constantly are looking for support and maybe self judging ourselves in terms of Oh, well, this kid is going abroad, Why can't my kid do that? Well, everybody is going to be ready to master different things related to diabetes and life as a young adult at different points. So I want to highlight by saying, join our CDN young adult journey with us get connected. And best of luck to everybody who is graduating. Congratulations. And thank you both to Shane Haley.   Stacey Simms  48:44 Yeah, thank you all for joining me. This was an amazing conversation. I hope you'll come back and check in and I really appreciate it. Thank you so much.   Unknown Speaker  48:57 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  49:02 Lots more information as always at Diabetes connections.com. Or in the show notes. If you're listening on a podcast player, I've been hearing more and more about issues with Apple podcasts, which is the most popular podcast player and the probably the number one download source for this show. So if you are having issues and you can't see the show notes, you can't click on links, or you're having any issues. First, I'd love to know about that. And secondly, just go to Diabetes, Connections comm where every episode now has a transcript and has all the show notes and links easy to get I don't know what's going on with Apple podcasts. They made some big changes in May and it just hasn't been the same since. Before I let you go. Just a reminder that we have our live newscast every Wednesday 4:30pm Eastern Time on Facebook in the news is something I started a couple of weeks ago and the reaction has been great. So thank you so much for that couple of minutes less than 10 minutes every week with the top diabetes news headlines. to round up, and then I'm releasing it as a podcast episode a couple of days later, we will be focusing quite a bit on so much technology news that came out of att D, the most recent conference that just wrapped up and looking ahead to other FDA approvals and research and whatever news comes my way I will pass along to you. Thank you so much as always to my editor john Kenneth from audio editing solutions. Thank you 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  50:35 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

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

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

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

When Swiss pump maker Ypsomed launches brings it's business to America, likely in 2022, it'll be with Lilly Diabetes as their partner. The Ypsopump will be the first pump in the US that only takes one brand of insulin. This week, we spoke with Mike Mason, president of Lilly Diabetes about that decision, more about how the actual pump system will work and their timeline. Stacey also talks about how they were able to use a coupon to keep Benny on humalog - it wasn't as easy as some have said. And she has advice to make it work for you. Plus, new A1C guidelines for kids with 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: Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke HypoPen, the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.   Announcer  0:21 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:27 This week, Swiss pump maker Ypsomed is teaming up with Lilly Diabetes to launch an insulin pump. Here in the US, it'll be the first pump that only takes one brand of insulin is Lily about the thinking behind that decision.   Mike Mason  0:41 We look at this ad we don't look at it necessarily as limiting options, we look at bringing up a new option to the marketplace that as an integrated solution can provide a new way to be able to control the blood sugar. So that's how we look at it.   Stacey Simms  0:57 That's Mike Mason, president of Lilly Diabetes, we talked about what that integrated solution is more about how the actual system will work, and of course more about its unique proprietary nature. I'll also catch you up on our insulin coupon experience and talk about new A1C guidelines for kids with diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show where we aim to educate and inspire about diabetes with an emphasis on people who use insulin. This year, I'm doing a heavy focus on technology. So this episode is a bit of a follow up, or maybe a partner to the one we did in January with Ypsomed. As was announced late 2020 Ypsomed and Lilly diabetes are teaming up to bring the existing YpsoPump which is used in Europe and Canada and some other countries around the world to bring it here to the US hopefully to submit to the FDA later this year, and be in the marketplace in 2022. The Ypsopump, as you heard in that episode already has a lot of features that are very popular. It's a very lightweight pump, it has the hybrid closed loop system, similar to Tandem t slim, similar to what Omni pod is hoping to launch later this year. So there's a demand for this kind of pump. But the question is what's going to happen because of the proprietary nature, as you'll hear in this interview, and as we talked about with Ypsomed, this pump will only take Lilly branded insulin. So to that end, and did you know that I have a weekly newsletter they do. And this year, I added a poll to it, which is really very popular. I'm so excited to see this. And when we did the episode with Ypsomed,  I asked in the newsletter about your opinion on it, would you use a pump that only took one type of insulin? And I gotta say the results were really interesting and I thought kind of surprising. So 40% of people said yes if it's a great pump that is worth it 48% said maybe I'd have to feel confident about my insurance coverage and 12% said no way I thought the no way would be a bigger number so we'll keep those polls going I have a link always in the show notes about signing up for the newsletter it's very easy to do I don't spam you come on you know it's just me. I do send out a newsletter though with the week's show some thoughts about it that poll and some other information you know, as social media shows us all fewer posts frankly from the pages that we like and the people that we follow. This is a great way to make sure that you do not miss an episode and that you know what's going on with the show at all times. Okay, Mike Mason from Lilly in just a moment but first Diabetes Connections is brought to you by Gvoke HypoPen and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in Gvoke is the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle and that means it's easy to use. How easy is it to pull off the red cap and push the yellow end onto bare skin and then 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 comm slash risk. My guest this week is the Senior Vice President of Eli Lilly and company and the president of Lilly diabetes. Mike Mason has been with Lilly since 1989. we last talked to Mike on the show back in 2018. It was our first conversation about the price of insulin. And we of course bring that up here in this interview. But we are mostly focusing on the pump and the partnership with Ypsomed and what it's going to take to bring it to the US although I promise I do talk about pricing and accessibility and everything you want to know. Mike, thanks so much for joining I'm really interested to learn more appreciate you coming on and spending some time with me.   Mike Mason  5:04 Happy to do it, Stacy, appreciate what you do for people living with diabetes.   Stacey Simms  5:08 Let's just start by talking about the partnership here with Ypsomed. How did this come about? Tell me about that, you know, the basics. And I guess we could start with really just, you know, why are you at really excited about this?   Mike Mason  5:21 Now we're excited about it. I mean, what we do is we step back, and we take a look at where the unmet needs are in the marketplace, today, and then how science and technology is developing. And what we saw was that, unfortunately, a good percentage of people who who live with type one and type two diabetes for own insulin are not in good control. And so we saw an unmet need there. And we saw enough advancements in cgms, as well as technology that we felt that putting insulin together with a CGM, and in good software and analytics, that we hope can provide better outcomes with really less burdensome for someone who lives with type one or type two diabetes. So that's why we were interested in getting into this space. And as we were looking at options, we thought it was best for us to pursue a partner that had a good pump that was on the market today, who was an excellent developer and manufacturer of pumps. And we found the perfect partner in Ypsomed. So we we really liked their pump. They're an excellent Swiss bass manufacturer, and we think it's a good cultural fit for us, we think we really will work quite well together. And we're both very customer focused and want to make sure that ultimately, what's most important is helping people who live with diabetes achieved the control,   Stacey Simms  6:49 before I asked you about the functionality of the pump. And before I asked you about the features of the pump, and more about the partnership, I'm just curious if we could go back, I was at the blogger event that Lily had in Cambridge, in 2018, where you showed us kind of the prototype of a pump that you were working on with a different company, can I ask, What happened to that is that not going forward in any way, shape, or form now,   Mike Mason  7:13 oh, we very much hope that that product goes to the marketplace, the rights to the DEKA pump has gone back to DEKA, we really value our partnership with them. We think it's a very advanced pump. And we think it could really help people living with diabetes. And we know the DEKA is advancing, planning on, you know, advancing that pump to the marketplace. For us, we reflected back on how we can, you know, best use our capabilities to help people with diabetes and other therapeutic areas. And as we were facing COVID, we reflected on our ability to develop a new antibody in nine months and get that to the marketplace and manufacture that and we felt that as a company, our development, and manufacturing focus should really be on developing new medications versus new new pumps and new devices like that. So we decided our deck arrangement, we were responsible for the manufacturing and a good part of the development. And we felt it was better for us to find a partner who already had a pump, who is a manufacturer and developer, and for us to say primarily focus on building the integrated system and really having that experience with the people living with Type One Diabetes and type two diabetes.   Stacey Simms  8:34 So any DEKA pump that goes forward, will that still be used with the proprietary cartridges that we're going to talk about down the road? I mean, it's slowly still involved with the DEKA pump whatever comes to market, or is it basically all in their hands now,   Mike Mason  8:47 it's in their hands at this point.   Stacey Simms  8:49 Let's talk a little bit more about that. Ypsomed partnership. As you listen, we did an episode with them. They went through a lot of the factors and different functionality of the pump. So I'm not going to go through that all again here. But I am curious, Mike, if you could talk a little bit about the algorithms in the pump. In other words, how might it be different from the other pumps that are coming to market tandems control? IQ software is one the Omni pod horizon, that sort of thing.   Mike Mason  9:14 Yeah, I mean, I think algorithm will be critically important at the end of day what's what's most important is that you you build an integrated system and cannot help someone achieve better control. And what we think is we can use our 97 years of experience with insulin to build algorithms that that do a very good job of controlling insulin and blood blood sugar. And so that's our plans if we as we develop new products like Lyumjev our new ultra rapid insulin. This provides us to potentially provide unique algorithms that can really maximize the potential of a product like longevity.   Stacey Simms  9:52 So let me ask you the the biggest question for my listeners is all about the proprietary nature of the pump. And before we get into that, let me just ask you a few details about it. But only use humalog or will it use other insulins you mentioned, Lyumjev things like that.   Mike Mason  10:06 Yeah, let me tell you a little bit about the pump and why we were excited about the pump, we think it's a very good form factor. It's a small pump, it has a kind of icon based screen that makes it very easy to use for people who were. But one of the most interesting parts of the pump for us was the fact that they  that uses a 1.6 millimeter cartridge. So it's a prefilled cartridge, that then gets plugged into the pump. And what that allows is allows someone to change if their reservoir goes down. So if the cartridge runs out, they can add new insulin independent of their infusion shed change. So if you think about the future of infusion sets, we think that will grow from three days to longer than three days, just like we saw the wear of cgms increase. Well, that doesn't help if your reservoir if you have to change your infusion set every time you use your your reservoir up. And so we believe that the 1.6 ml cart and the fact that they can, you could do kind of a hot change and change that independently. infusion pump should be a really nice feature for someone living with Type One Diabetes, or even in particular type two diabetes who uses larger amounts of insulin on a daily basis, be able to get the full life on an infusion set and be able to add insulin very easily into the pump. So that was one of the primary features that we liked. And so right now that 1.6 ml cartridge isn't on the market. And so in our press release, we communicated that we needed to make sure that we did launch that 1.6 ml cartridge in our insulins, both humalog and loon jet to make sure that that people could use our products in that pump.   Stacey Simms  11:51 When it comes to market. It will only let me ask it this way. Right now in Europe and in Canada, though it takes the prefilled cartridge the same pump of novo, right I mean, these 1.6 milliliter cartridges exists elsewhere. This is a US only type of modification. Is it a different kind of pump that's manufactured in the US? How does that happen?   Right back to Mike answering that question. But first Diabetes Connections is brought to you by Daario health. The bottom line you know you need a plan of action with diabetes. We've been really lucky that Benny's endocrinologist has helped us with that and that he understands the plan has to change has been he gets older you want that kind of support so take your diabetes management to the next level with Daario health they're published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one see within three months at a 58% decrease in occurrences of severe hypoglycemic events, try Darias diabetes success plan and make a difference in your diabetes management go to my dario.com forward slash Diabetes Connections for more proven results and for information about the plan now back to Mike about how the mechanics of the proprietary nature of the pump will work   Mike Mason  13:17 well in the us right now there's that 1.6 ml cartridge isn't on the market place so we'll have to see you know is that advances is still kind of early on in development so we don't really know what instance will be available in the US for this you know in this cartridge size. But what do you think is important is first of all, I don't think anyone should be worried if they're on novels insulin or any other instance there's going to be plenty of pumps really good quality pumps for them to use so I wouldn't have you know anyone be concerned about their ability to have a high quality pump to use with their insulin what what we see is we we see an opportunity to provide a you know, an integrated, very simple to use pop another option for people living with type one and type two diabetes to have a an integrated, simple experience to improve their their blood control.   Stacey Simms  14:08 Yeah, no, I think it's it looks like a fantastic pump. It's tiny, it's light. I know people in Europe who used to love it. I love the idea of having more pumps in the United States. But just to be clear, so I guess the the question about the proprietary nature that we keep referring to is it just because there's no prefilled cartridges of other insulins available in the United States? I mean you probably cannot answer this so I'm gonna say this out loud and you can say no comment or nothing but if I have a yep so mid pump that is approved in here and let's say 2022 and I bring in novo rapid or you know Novo Nordisk branded insulin from Canada in the same kind of glass insulin cartridge and I stick it in the pump I've made my IP so med Lily pump now compatible with other insulins.   Unknown Speaker  14:56 Okay, didn't you comment on that   Mike Mason  15:00 Wow, yeah, you're expecting a lot of people moving bringing product over from from Canada, I, you know, it's still we're still very early on in our apps is at this point, things are gonna have to develop and we'll get a better answer that question down the road.   Stacey Simms  15:14 Got it? Okay, I know, I know, you cannot speculate you have to be so careful on what you say. And I appreciate you coming on and answering these questions. But I mean, I'm sure you can understand in a market that has three available insulin pumps in the United States that when one comes in, people have questions about why should I switch to him? And the biggest question that I have seen is, well, pumps usually have a four year warranty. And my insurance changes every year, whether I have with the same insurance or not, the terms often change, including what insulin they want me to use, we just went through this with my son this year, we had been using one type of insulin for a long time, and they switched us to another brand. And, you know, it's disconcerting, and it's a little, you know, it's, it would make I'll be honest with you, Mike, it would make me hesitant with the United States healthcare situation being what it is right now, to go to a pump, that would lock me into one kind of insulin, you guys have got to be thinking about that. What are the discussions? Like? Can you share anything about that?   Mike Mason  16:12 Well, let me tell you kind of how we think about I mean, we, our goal is develop an integrated solution, I kind of look at it a little bit like the computer market, where, you know, early on, you know, you were able to and you still can today is build a an integrated system, you know, you can pick the monitor, you want the processor you want. And my brother continues to do that. And he has a great computer that works really well for him. And for myself, that's not what I'm looking for a computer, I've got four kids and a lot to do. And I want something that's just gonna work, I don't necessarily care what the processor is, or what the monitor is. And so that, you know, I kind of went to a Mac 1520 years ago, because it was simple solution. So it was another option out there, I think, you know, Apple provided a another option to people who needed to get work done and wanted to use a computer, we kind of look at that the same way. On the pump side, I think you're gonna have people who are want to have each component and be able to build that. But if we look at some segment of the market, and in particular those people with with type two diabetes, we believe a simple solution can provide, you know, a real good answer for those individuals. So what we look at this ad, we don't look at it necessarily as limiting options, we look at bringing a new option to the marketplace that as an integrated solution can provide a new way to be able to control their blood sugar. So that's how we look at it.   Stacey Simms  17:40 So let's talk a little bit more about that integrated system. When I spoke to Ypsomed, they talked about it using a Dexcom having a very robust app, it looked like you were able to bolus by phone or you would be by the time it comes to the United States. Is the partnership with Dexcom exclusive or do you think you might work with other companies like Abbott, you know, on their libri and different cgms that could be integrated into the system?   Mike Mason  18:04 Yeah, right now it's a three way partnership between us and and you have submit and then with your leveraging Dexcom CGM. At this point, we'll have to see how things progress and whether or not we bring Abbott or other CGM into the system.   Stacey Simms  18:22 Ypsomed is also very much a pen company. And when I remember in that 2018 event that I've talked about before, Lily was also talking about integrative pens and things like that. Is that part of this deal here too? Or is it just a pump?   Mike Mason  18:36 Now, this was just an exclusive partnership.   Stacey Simms  18:38 So when when you were looking at it, so med pump, as we mentioned, it's very light, it's very intuitive. Have you tested it? Or have they tested it in the US market yet? Is that something that you'll be doing in terms of, you know, human factors and how people respond to it? And that sort of thing?   Mike Mason  18:53 Yes, we have to, you know, it'll be submitted to the regulatory agencies in order to gain approval in the US market. And as part of that, it will be tested in the US through human factors. And we think it will, will do quite well. We've done a lot of market research and interviewed people who use pumps are who are interested in using pumps. And we think that the attributes of the product are going to be well received in the US market. You know,   Stacey Simms  19:19 again, I don't know how much you can answer on this question. But when you bring a pump like this that's been used in many other countries for several years, is the testing different than say, you know, what you were what you were originally planning from Cambridge with the DEKA pump, a brand new pump, something that hadn't been on the market yet. I would imagine that it's a I don't want to say a little smoother, but it's got to be different. When it's already been out there and used in 1000s of people.   Mike Mason  19:42 The information is helpful, but the application is similar for every pump, no matter where it's approved, or whether it hasn't been approved before. So you know, the FDA requirements are the same no matter what   Stacey Simms  19:52 got it. I'm curious to know the cartridge that we've been talking about that isn't available in the United States yet. Are there other applications For Lilly for that, I mean, that 1.6 unit cartridge? Is that something that could then be used in pens? Are there other uses for it? Or will you be making it just for this pump?   Mike Mason  20:09 I mean, initially it will be used for this pump or any other device that uses 1.6 volt cartridge, you will evaluate every time you put a new form factor of insulin out there, we'll look and see if there's other opportunities that better meets the needs of people living with type one and type two diabetes. So we'll see no immediate plans at this time.   Stacey Simms  20:28 Okay, are there other devices that use it currently, I'm not familiar, not currently.   Mike Mason  20:32 But it's no reason why someone couldn't produce a third party, you know, we usable 1.7 card. That is   Stacey Simms  20:42 it's interesting. You mentioned people with type two quite a bit in this conversation. And I know in my conversations with manufacturers with tech companies, more and more people with type two are using insulin pumps and are using devices like Dexcom. And you In fact, I'm really trying to talk about more people who use insulin rather than the specific types. We talk about devices like this, which honestly, it's kind of hard for me after all these years. Can you talk a little bit about the appeal to that market? How do they use this kind of pump? In other words, most people I know with type two who need insulin, don't bolus for every meal, they don't necessarily use the same amount of insulin as type with people with type one. I'm curious if there's any information you could share on that market?   Mike Mason  21:21 Yeah, I think what we see is, first of all the needs while the disease is different, the needs of someone to control their blood sugar, both for postprandial as well as for basil is still there, especially for those who are later stages other type two diabetes. And so we feel that no matter who someone is, if they're on insulin, the big thing they want is to kind of stop thinking as much about taking insulin three or four times a day, you know, that's something that weighs on a lot of people mind. And we think it's important to be able to reduce that burden, but also improve care. And that's what we think, integrated insulin management system can do that's wrapped around a pump, whether that's for type one, or type two. Now, your question around, you know, what's different about type two diabetes, the big difference is the amount of insulin that they take on a daily basis. And because of that, I think the reservoir size and the ability to change that independent of the infusion set is an important feature of this pop and one that we think both type one and type two, but in particular type two beddings can really,   Stacey Simms  22:33 you know, it's interesting, when I spoke to the folks at Tandem recently, they brought up their control IQ software for people with type two, and how it's really helped. Because most of the time, it's just that people with type two aren't bolusing for their meals, or for correction dosing. And so being able to have that automatically has really helped. It's something that I mean, just conversationally, it was something that I really hadn't thought of, with an automated system like that. It's interesting. Yeah, it's   Mike Mason  22:56 interesting, when we speak a lot with people using insulin, the needs on a daily basis aren't that different, and the thought process and how they manage that, you know, isn't that different, but you're right, you know, and unfortunately, taking insulin is very complex, and it changes on a daily basis, as you know, well, and that's what we hope, we hope we can alleviate some of that burden that people have of controlling their blood sugar and their and their diabetes. In the   Stacey Simms  23:24 United States. You know, anytime a new product comes to market, in addition to submitting to the FDA, you have got to work with the insurers to get these things covered. And I'm curious if your conversations about getting the med pump insured, also factor around making sure that anyone who ensures it can make sure going back to what we asked about at the beginning. We'll also cover Lilly insulin as a some kind of package. When I spoke to the CEO of episode med, he had kind of implied and this was speculative, and he admitted that, but he was kind of hoping I guess is the way to say it, that it would be more affordable in the United States because it could be packaged up with healthcare insurers. Any thoughts on that?   Mike Mason  24:05 Yeah, I mean, I mean, first of all, we'll make sure that there's obviously insulin supply for for the pump. And so we'll make sure that that comes hand in hand so that someone doesn't have a pump that they can't use their insulin on. So what will definitely solve that problem, as we go to the marketplace, I think, you know, we haven't had any specific discussions with payers on this particular product just yet. But what we've had, generally, in this area is you know, payers are frustrated with their ability to help their members get good control on insulin. And they believe that that better control on insulin can lead to better overall healthcare cost. If you look at the total cost of the therapeutic and devices as well as all the cost of office visits and the very costly, you know, company Patients have diabetes. And so they're excited to not only provide better care of the hope of better care, but also the hope of reduced total medical costs.   Stacey Simms  25:10 As we start to wrap up here, just a couple more questions. I got notification, we saw some ads on social media about this is separate from the pump about renewing any coupons for the new year. Can you speak to that a little bit? While I've got you here, you know, for 2021, the lily coupons that are out there? How do people do that?   Mike Mason  25:29 Yeah, all they need to do is call our Lilly diabetes Solution Center. If anyone has trouble paid for a Lilly insulin, you can call up early diabetes solutions center. It's staffed with people who are healthcare professionals who will understand the needs and be able to get your solution on the phone or to email that to you with without any paperwork to fill out or anything like that. And so if they do need if one of the things they need is that to get an updated coupon, they can just literally call them and we also are putting more and more options on the website. And we can get you more information on that. Stacey.   Stacey Simms  26:06 Yeah, that'd be great. If you could send me the links. And I'll I don't know, Mike, if you know, but I wound up using that coupon in the fall. Oh, yeah, as I said, My insurer switched us we switched in September to a new insurer. And they wanted us to switch to Nova log, which we hadn't used in many years. And I'll be honest, is a little bit of an experiment, I decided to try it. For whatever reason, it wasn't that easy. It took me a couple of weeks that I needed. prior authorization my pharmacist helped out it was we went back and forth quite a bit. But we did get it done. And I'm back to paying about $35 a month for Benny's insulin for my son's insulin, which was great. But it kind of brought me back to the conversation I had on a conference call with Andy Viacari  Last March, I want to say when you know, COVID had first hit and we were all really concerned about and unfortunately, it would bore out with employment in the economy. And the question I asked him at the time was just why not do away with all of these coupons. And because it really while it was difficult, I was able to use it would not have been able to get the Lilly insulin without it with my new insurance. So it did work. But I asked him at the time, I'll ask you now, why not just lower the price across the board to $35? And make it easy for everybody?   Mike Mason  27:19 Yeah, I mean, for us, it's a complex healthcare system out there. And we lower lowest price which we have was Insulin lispro that's one of the options that we've had, we dropped our list price by 50%. And, you know, we think that the sweetest solutions that we have, you know, with lowering our list price with listen into the lice pro as well as all the options that we have that are very targeted at the gaps in a system, which is the uninsured people, high deductible plans. And Part D, that we can create the best possible out of pocket experience, no one should have to pay more than $35 for literally insulin 43% of people who usually insulin doesn't pay anything for based on the health insurance. So, you know, we've looked at the problem. And we believe that this is the best solution we have out there.   Stacey Simms  28:07 I mean, I hear you, I get it, it's very complicated. You're not operating in a vacuum. But you've said several times that you want to help people get better control, the insurers want to get people in better control. One of the reasons people aren't in great control is because it's really expensive, even though, you know, if you have insurance, you're paying for it, you're paying for the high deductibles. I don't need to tell you we've had these conversations many times before. But I got to believe that this is not a sustainable system. And you know, I don't really have a question there for you, Mike. But I really hope that next year, we're not having the same conversation. And I know you don't want to have it either. So you know, I'm not not because you don't want to answer the questions, but because I I imagine that you know, that even if the price was lowered to $35, that Lilly would be fine. In business.   Mike Mason  28:51 I mean, first of all, if anyone has any concerns with, you know, 40 million insulin, call our Lilly diabetes solutions center, you know, with the most recent Part D demo project that the CMS introduced in January this year, no one whether you're in Part D, or commercial or uninsured and have to pay more than $35 for the insulin. You're right. I don't think the healthcare system right now is sustainable, whether it be for diabetes or other chronic diseases, we shouldn't put the medications that are designed to improve quality of life and to reduce overall total healthcare costs. We shouldn't have those at a high price that people can afford. And so I hear you know, that we are advocating strongly and working with our other healthcare system partners, whether that be you know, pbms and insurance companies as well as employers and the government on this topic, and it is a very important topic. And I hope, you know, as the Biden administration comes in, that we can have very good conversations and make progress.   Stacey Simms  30:00 Mike, thank you so much for spending so much time with me. I know I kept you over a few minutes and I appreciate you you're hanging on and answering those questions. Thanks for being here.   Mike Mason  30:07 Thanks, Stacey appreciate it. appreciate everything you do for people living with diabetes.   Unknown Speaker  30:16 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  30:21 More information about Lily and Ypsomed their partnership at Diabetes connections.com. The episode homepage, of course, has a transcript and more information, lots of links. But this is a story that we will of course, be watching over the next two years until this pump comes to market who knows what it will really come to market as things change along the way. But I'm fascinated by the proprietary nature as you can tell, because I'll tell you our Insulin story and in just a couple of minutes, you know, if you're using one type, your insurance company can switch you to a different type, it can be very difficult. So we'll see another point I just wanted to mention, I didn't bring this up during the interview. But when Mike talked about the uniqueness of being able to change the cartridge, independent of the inset, there is something unique there about the YpsoPump, and I'll talk about that in a second. But it's not exactly as he explained it, you can do that with any tube pump with the Medtronic that are out there right now with the Tandem t slim any tube pump the way we have done it and we have always done it since using atomists. Gosh, almost 14 years ago. Now, when the cartridge runs out of insulin, we change the cartridge. When the inset hits three days, we change the inset and we don't do them together. Not everybody does it that way. Many, many people change them together, they have worked out exactly how much insulin they need, or they just feel more comfortable doing it together. Whatever is your pleasure. But the thing about the episode med pump that is different. My understanding is that when you do that you do not waste the insulin that is in the pump tubing, there is a different way there is something about it. That means you do don't have to push through and prime all of that insulin because I know what the Tandem you do waste insulin because of all the priming. So I just wanted to kind of clear that up and address that. As you listen. I know many of you were thinking that's not unique, but that's what he's talking about. I have also reached out to DEKA, that is the company that was originally partnering with Lilly, we mentioned that the interview to have a new pump and pen system in the US is very different looking pump, it was cylindrical that was I don't know if that's the right way to say it like a disk, it looked almost like a tiny tin, you know when that's coming to mind is like a tobacco chew tin. Or maybe maybe mints is a better way to put it like almost smaller than your palm, but small, thin and circular. And that was the pump that they were working on really interesting. So I've reached out to DEKA to see if they're going to continue that work. And DEKA, just as an aside is the company from Dean Kaman D. k. Dean came in. He is the person who invented the insulin pump years and years ago, very first one and he's invented a bunch of things, including the Segway. So I'll link up stuff about him to very interesting, I'd love to have him on the show. But that's neither here nor there about Lilly. I do know that many of you get frustrated when we talk to them, because you want me to just talk about insulin pricing. As you can tell, you know, Mike says what he's going to say. And I will continue to ask about it. We'll continue to talk about it and send me your questions. I'll see whatever I can do our insulin story coming up in just a moment. But first Diabetes Connections is brought to you by Dexcom. And it really is hard to think of something that changed our diabetes management as much as Dexcom share and follow. It is amazing to me that it helps us talk less about diabetes. And that is really one of the wonderful things about share and follow as a caregiver, parent, spouse, you know, whatever, you can help the person with diabetes manage in the way that works for your individual situation. It's about communication, and finding out how they want to share the information. Even your kids this is a decision that you can make together and talking it out really, really helps internet connectivity is required to access Dexcom follow separate follow app required. Learn more at Diabetes connections.com and click on the Dexcom logo.   In our innovation segment this week, I'm going to get to our Insulin story. But I also want to mention that there's new guidelines for the A1C when it comes to kids. This was kind of quiet. I was surprised it didn't get a lot of attention. I posted it on social and it was kind of met with a big shrug. The American Diabetes Association has lowered the target A1C guidelines for children with Type One Diabetes. I will read from the summary here. The goal in recommending stricter glucose control was to ensure children with type one have better immediate and long term health outcomes with fewer health complications and reduced mortality rate. The number has gone from 7.5% for children to less than 7%. And I think as you listen you know, the podcast audience, frankly is extremely well educated you guys are up so much stuff. And many of you are already striving for less than seven, you're striving for less than six. We are not striving for less than six. But I think that this is something that many of you are saying, Well, of course, but I gotta tell you, I'm a little disappointed in the way they released this. They talk about why they say things like these stringent measures are not always practiced by caregivers of 20 patients or diabetes providers due to concerns and fear, it may cause sudden or dramatic drops in sugar levels. And promise, I'm not gonna read the whole report, but they don't talk about better education. They don't talk about access to CGM, to insulin pumps to integrated systems. There's no wording here in the reports about cost, or making sure you have an a pediatric endo, who will give you these things and educate you. I got really annoyed, frankly, reading this, and we'll revisit this, I'll probably reach out to some of the endos who worked on it, I hope to and talk about Yeah, guidelines are great goals are great. But how are you really going to get us there? Because we all know that the A1C needs to be lower right? I am hoping that some of you who have kids with an eight or higher A1C are nodding and going, Yeah, well, what about help for me? How are we supposed to do this alone? I just don't think it's enough to say here's the number. I think they need to give much more help and support. Maybe that's a pipe dream. I know, most pediatric endocrinologists are great people who really want to help. And you know, they see us for this teeny tiny amount of time. But let's follow this one along because it's just it's, it's just so frustrating to know that we have a place we want to be, but how do we get there? And you know, one of the reasons we get there, and Mike said this in our interview is, you know, we need to make sure people have better access to insulin, so they can live better with diabetes. Well, sure. We went through this recently in my family and I will not go through this beat by beat I did like 10 or 15 minutes on this as a Facebook Live and told the story about a when we were switched, our insurance company switched us from humalog to Novalog, I told the whole story very lengthy double not do that here. I'll tell it in a shorter way. If you want to see the whole story, I'll link it up. But I realized I never told the rest of the story here on the actual podcast. So here we go. In the fall, in early September of 2020, we had a change in our insurance, a change of employment meant we were now buying our own insurance. And we actually had a great experience. We did this several years ago and had a disastrous experience. It was so expensive, and nothing was covered. I was really excited that this time around, we found something great. We used an insurance broker. And I would highly recommend that maybe we'll do a show on that I'm making all sorts of notes on future shows. But somebody helped us he didn't know a lot about diabetes, but he knew what we needed. So that was great. And my husband lives with type two as well, as you likely know. But this new insurance company did not have human blog as the one they wanted us to get. It was no vlog. And I posted the pricing on social media. It was like, you know, $35 a month for Nova log, and 13 $100 a month for human log. So it was quote covered, but you know, at a different rate. And we were going to go ahead and do that Benny had used Nova log for I want to say the first seven years of his diagnosis, and then our insurance switched us. But he's been doing really well. Everything's chugging along, and I thought, Gosh, I really don't want to switch him. And I was kind of at sixes and sevens not really knowing what to do. And I was talking to my parents about this. And my dad said, I heard on your podcast that if you have commercial insurance, you can get any insulin with a manufacturer's coupon for $35 a month. And I thought Dad, you're the best. Thank you for listening to my podcast. And of course you are correct. And then that week, I spoke with beyond type one about their new website, get insulin.org. So I went on, get insulin.org and filled in all the information and a coupon popped up from Lilly. I printed it out and it said go right to the pharmacy and get your insulin. And I know how these things work. So I didn't go to the pharmacy, I called the pharmacy and said Is this legit, and they went, you know, tickety tickety tick and the computer. Sorry, Stacey, this isn't going to work for you. And I know the pharmacist there very well. We've been so fortunate. I've known him for all of Benny's diagnosis. I want to say all 14 years, it's been the same guy. So we really went back and forth and tried to figure out what was going on. It was a quirk in the way our insurance wanted to build it. So I called Lily. They said no, it should be fine. Here's the codes to give the pharmacist everything should be fine. They called the pharmacist he said No, those codes are not going to work. And they didn't what he told me to do. And this is what worked. Our endocrinologist had to call it a brand new prescription. We were going off the old one that we'd been using, you know for the whole year many years. So he had to call it a new prescription. He had to call in a prior authorization. And then after that when they reran the coupon, it worked just fine. Everybody's different. The pharmacist and the folks that Lily told me that every insurance, every state, sometimes the pharmacies run these different ways. So if you run into a brick wall, definitely keep pushing. And I'm telling you as a listener of this podcast, if you do run into a brick wall Lily and their coupon, email me Stacey at Diabetes connections.com. Let's make sure you're talking to the right people, because it took me a while to find the people that really dig down and do this at Lilly. That's their job. And how ridiculous is this that this is somebody's job to figure out How to get around all these coupons and use them in the ways that they're meant to be used, rather than just dropping the list price. I mean, it makes me crazy to talk about, I'm already going too long. Bottom line is we got the coupon to work. And then it worked a second time. I called my pharmacist the other day, because it was time to renew and I said, Hey, you know, I've heard that you have to renew in the new year, is it going to work? And he said, it's going through just fine. And then he laughed. He's like, let's run it without the coupon. I said, Why? Why? He was just curious. He's like, yep, it's still, you know, 13 $100 a month without the coupon. I said, Well, don't put it in without the coupon. Don't even bother. So that's the story. It leads me back to what happened if I was using the app, so pump with Benny. And then in September, my new insurance company said, No, you have to use no dialogue. And I didn't know, I didn't have a podcast. I didn't know I could do all that. I didn't know I could get the coupon or what if the coupon goes away, there's no guarantee it's going to be there. And then I'm stuck with a pump that I can't use the insulin that my insurance company makes me use. So obviously, we don't know. That's a lot of speculation. But those are the concerns I have. Have you used one of these coupons? How about the nofo coupon what's working for you guys? I'll start a thread in the Facebook group. But you can always you know, ping me and let me know what's up with you. Or if you need help that way. It's just ridiculous. Maybe next week, instead of innovations. I'll bring back Tell me something good. We need the good news stories, too.   As I mentioned last week, we are about to start classic episodes. The first one will be this Thursday. And that is an episode I taped almost five years ago with Ernie Prado. He is a rocket scientist for real at NASA. Great guy. It was so much fun to talk to him. He has a terrific story. What I love about his story is it's not the perfect diabetic. He really struggled. And he talks about why and how he kind of got out of that. I think it's one that as a parent of a child with type one. I love those kinds of stories because I don't expect perfection in my kid. And I really like to hear about other people who all due respect, Ernie, who really messed it up and are okay, are doing fine now. So that's on Thursday. You don't have to listen to it on Thursday. Obviously, whenever you have time, we're going to be putting out a lot more episodes. So when you have time, listen to podcasts. We'll be here for you. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. Until next time, be kind to yourself.   Benny  42:22 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Sansa arrives at Castle Black. Tyrion makes a deal with the slave masters. Jorah and Daario sneak into Vaes Dothrak. Ramsay sends a letter to Jon. Theon arrives at Pyke. […]

Sansa arrives at Castle Black. Tyrion makes a deal with the slave masters. Jorah and Daario sneak into Vaes Dothrak. Ramsay sends a letter to Jon. Theon arrives at Pyke. […]

The Medtronic 770G pump was released in the United States just a few weeks ago and Robe Howe is one of the first to use it. Rob shares his first impressions and tells us what he'd really like to see in pump technology. (Rob is a paid ambassador for Medtronic, but they did not clear or review his comments for this interview). Rob & Stacey spend a lot of this episode on other issues, talking about whether people with type 1 are "disabled" and what it means to use that word. Rob talks about achievement bias (and explains what that involves) and a lot more. We also find out about his fun modeling gig with Express and about his COVID-adjusted wedding in 2020. Previous episodes about Medtronic here, including our in-depth discussion about the 770G and what else is on tap. Our first episode with Rob Howe (all about using so-called Walmart insulin) In Tell Me Something Good – legislative action, a diabetes blog gets a shout out and a new tip makes a difference for a site location. And Stacey makes her predictions for 2021. 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 Tell me something good links: New Washington State Law Caps Insulin Price type 2 blogs ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription  Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities. By Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Unknown Speaker  0:22 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:28 This week, Rob Howe is one of the first people in the US to use the new Medtronic 770Gpump. We'll talk about that. But our conversation got a lot more personal, including a discussion about whether most people with diabetes consider themselves disabled and everything that goes along with using that word.   Unknown Speaker  0:47 I want  to say like I Rob Howe, professional athlete, the guy who's goes and speaks and is like, you can do whatever you want. I identify as disabled, I am disabled, I have a disability. That doesn't mean that I'm not going to wake up tomorrow. And if my blood sugar's high, I'm just gonna quit and be like, you know, sayonara team   Stacey Simms  1:01 Rob is also a podcaster. And he turned a few questions around on me, we went a few places I wasn't expecting, including my hard “no” stance on Disney guest passes from years ago, and a lot more. And we do talk a lot about the 770G as well. In Tell me something good legislative action, a diabetes blog gets a shout out and a new tip makes a big difference for site location. Plus, at the very end of the show, I'm going to do my predictions for diabetes in 2021, technology,  community, and more.   Stacey Simms  1:32 This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome back 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 with Type 1 14 years ago, my husband lives with type two, I don't have any type of diabetes. I'm the broadcaster. And that is how you get the podcast. I released an episode on New Year's Day about the COVID vaccine. And we've had a big response to that the episode was about health care providers with type one who had received the very first batches some of the first people in the US to get that first of two COVID shots. But the response was mostly people wanting to know where they fall in the priority order for receiving it. Dr. Ponder Dr. Steven Ponder was in that episode. And he's an endocrinologist in Texas. He had been trying to get Texas to allow type one into the higher tier. But it looks like this is going to vary state to state, I would urge you to jump into our Facebook group. It's Diabetes Connections, the group and I'm just start a thread. Let's try to get everybody up to speed whatever state you're in, link up the health department look up a news story that you know of let us know what's happening where you live. Here in North Carolina, they're talking about chronic conditions for one of the phases but it's not clear if it's just type two with type one will be included. As Dr. Ponder said, How are they going to check? Right? Do we really want the people giving the vaccines to have to worry about you know, give me your paperwork or your type two type one. Where's your doctor's note? I mean, it's already so much less efficient than we all had hoped. I do think they are making good progress. As I'm taping this at the end of the first week of January. Here in North Carolina, where I live, they have announced that they will be using the National Guard to help out which I think is terrific. And as I mentioned with a husband who's got type two, with my 16 year old who has type one who is eligible for the vaccine, we are going to watch closely to see when it is our turn. But again, I'm hoping we can get a big Clearinghouse going in the Facebook group with information with sourced information about when and where the vaccine will be available, where you live. My talk with Rob Howe about Medtronic and this talk really did turn into something more. It's not a typical interview for the show. I think we'll get to that in just a moment. But first Diabetes Connections is brought to you by Dario. And one of the things that makes diabetes management difficult for us. It really kind of annoys me and Benny, it's not really the big picture stuff, right? 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 and with visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to My Dario dot com forward slash Diabetes Connections. My guest this week has been on the show before with a very different focus. Rob Howe joined me two years ago to talk about so called Walmart insulin which he used for a while as kind of an experiment if you want to hear how it went. I will link up that episode from 2018. Just go to Diabetes connections.com click on this episode or the show notes wherever you're listening We have a pretty robust search on the website as well if you prefer to search it that way. Rob is the host of the podcast, diabetics doing things. He is a former Washington Generals player. That's right. He's the bad guy. He was on the bad guy team against the world-famous Harlem Globetrotters. And this year, Rob became a model in a very cool campaign for Express and he got married. So Rob has a lot going on. And we've talked about quite a bit of it here. There is also a video of this interview over on our YouTube channel on Diabetes Connections over on YouTube, if you prefer to watch it's kind of fun to be doing more video interviews, let me know what you think about that. In addition to the audio, Rob is a brand ambassador for Medtronic, and he started using their newest pump, the 770G in December, we talked about that, and then had a conversation about everything from the word disability to why I never got Benny, a guest assistance pass at Disney. In fact, I put my foot down and said no to what he calls achievement culture within the diabetes community. Always great to catch up with Rob how from diabetics doing things, podcasts, and so many other things in the diabetes community. You become the go to emcee, I see you all over the place at virtual events. Thanks for jumping on. It's great to talk to you again.   Rob Howe 6:13 Yeah, thanks so much for having me. I've become what I call, and literally no one else says this except me. I'm the host with the most Insulet on board. So yeah.   Stacey Simms  6:23 Oh, I'm gonna steal that the next time I introduce you, I'll make sure to say that please   Rob Howe 6:26 Please do.   Rob Howe 6:28 I love it. Well,   Stacey Simms  6:30 listen, we've got a lot to talk about today, I want to start off by just jumping in because the latest thing for you really has been not a change of technology. You've been a Medtronic guy for a long time. But you've got the latest version of Medtronic pump. So tell me, when did you start using the 770?   Rob Howe 6:49 Yeah, so I am very fortunate. I've worked with Medtronic for a long time. And I've been a patient of Medtronic for even longer. So today, as of recording, it's December 16. And I think I've been on the Medtronic 770Gnow since December 1, right around there. So it was in the first wave of of Medtronic, folks, employees Ambassador group to get access to the new pump. And it's exciting. I mean, I think for me, I've been on the 670 g now for almost three years. So you know, one of the criticisms of the new pump is that it really isn't very different, in turn from a technological standpoint, except it does have what we've always been very critical. And I mean, we as the diabetes, greater community of the 670 was that there was no Bluetooth connectivity to the phone. So I think this is Medtronic response to say, Hey, we hear you we got to have Bluetooth connectivity. And it's great. It actually, the app is super intuitive, the mini med mobile app and it has your basically your sensor glucose like you would normally see on your pump display, but it also has your 24 hour time and range. So just a quick little swipe, you can get over there and see your your 24 hour numbers, which is kind of nice, especially if you've had a really good day, you can see that you know those high time and range numbers. So it's exciting. And you know, I think for people who are, you know, really into the nitty gritty, it's also a new transmitter for the sensors. So it's still the Guardian three sensor, but a new GL three transmitter, which just has a few of the, you know, annoying, calibration tweaks that some people have, I think more vocal people than I have have, for sure lamented. So the the new transmitter is excellent and has fixed a lot of the challenges from the early days.   Stacey Simms  8:26 We talked to Medtronic a couple of weeks ago, and I'll link up that episode in the show notes here to go through all of the features and what's coming next. But it really is interesting how so often these companies and it's not just Medtronic, I would kind of compare it to Omnipod dash right so they have one version, then they almost have a stop gap, which has some improvements but isn't the big shiny thing that we're waiting for you know the if you're looking at the technology so carefully, which will be the 780 which is out in Europe and will be out soon. But you know, I have heard a couple of people who have used Medtronic for a long time like you have say the phone stuff would be nice but I don't really need it. And now that you have it, you really look at it more i mean i don't have diabetes and so I'm trying to get myself from following Benny so often to not looking at it 24 seven, but was it really that different for you to kind of just look at your phone more than your pump   Rob Howe 9:15 right now. I'm operating mostly from home so there isn't a you know, work meeting where I would feel better about pulling the phone out versus taking the pump out of my you know, pocket and I am an insulin pump in the pocket person so I don't wear like a holster or anything like that. And obviously Medtronic pumps have tubing, but I think it's nice to just be able to you know, you're on the phone all day all day. Anyway, I'll admit I spend a lot of time on my phone and being able to click over in the night. You know, I think that's been the time that I've used the app the most when you know in when I'm laying in bed,   Stacey Simms  9:47 I think it's huge to have it on the phone. My kid is a pump in the pocket kid too. And he would never look at it. If he didn't have to. He's on the phone and it would you say maybe a couple of directions. He it would be really a big deal. If he suddenly lost that which he hasn't even had for that long, right? Well, anyway, you get used to.   Rob Howe 10:04 Exactly. And I think that's where I think as consumers, and this is sort of my you know, before getting more and learning more about what goes into diabetes technology from a FDA approval standpoint, and all of the sort of hurdles that they have to go through, you know, I was sitting there streaming a movie on my iPhone on an airplane, and I'm like, wow, if I can stream a movie on my iPhone on an airplane, we for sure should be able to look at your blood sugar numbers on a phone. But I'm very much like Benny, I love the phone, very familiar with the interface, I use it quite a bit. So I think, you know, in terms of having that convenience, it's just so nice. It's kind of just takes away, you know, I think Medtronic has really done a nice job in past years. And also going forward of really relieving that mental burden and making diabetes integrated into your life. And this is definitely something that makes diabetes just more integrated in the way that you already use technology, the way that you're already on your phone. And I can get a push notification. Now my alert on high if I'm, you know, I got my high alert set at 160 get the alert on high, it pops up in my phone, just like a normal notification. And I can take care of it then. So yeah, I really love it. And I think that's kind of like what you said with Benny, you get really used to it really quickly of having it there and having those numbers all the time. So it's just nice to have it a little bit more integrated into our everyday life.   Stacey Simms  11:15 Are you a big auto mode guy? Do you use the features of the 670. And now the 770   Rob Howe 11:21 I am I stay in auto mode. I'm a big auto mode guy. And I think the criticisms that I see of it online are fair, and it's not perfect. And I think Medtronic has done a great job of talking about those, you know, initially, this was like 1.0 of the hybrid closed loop systems, you know, so the algorithm is now in technology world is a little dated. But now, like you said, mentioned 780 coming soon, in the US. You know, the next version of that, I think is really exciting. But for me, I'm an auto mode guy. And I think the the biggest example I'll give for listeners is I love to play golf, I have a weekly golf round that I play on Sunday mornings, and I set it on auto mode. And before auto mode, I would go out and you know, my basil would be what it was and I have to set a temp target or attempt basil and you know, even before cgms I just basically have to have gummy bears stashed in my golf bag. And on auto mode. Thankfully, you know, I go in with no insulin on board in the morning if my morning starts off really smooth. And I can go through my entire round walking or in the cart and not have to worry about correcting and not have to worry about high so it's it's really nice. I love auto mode. That Blue Shield gives me a lot of confidence.   Stacey Simms  12:25 That's awesome. It's funny though, looking at as we're recording this on video I can see into your house is basketball stuff all over the place. Now I know you're big basketball player. We've talked about that we talked in the past. So I'm interested that you brought up golf and rather than basketball.   Rob Howe 12:38 Well, you know, I'm aging gracefully, Stacy. Like, you know, I think I still love playing basketball. And I think that's one thing that sentimentally I think there's been so many terrible things that have been taken from us because of COVID. And the thing that's been really eating away at my heart, and my soul is not being able to play basketball and because it's just not safe. And I think in Dallas, especially we have so many cases and I've been able to do some training in a gym, by myself wearing a mask, but I just missed competing and I think golf, you know, you're competing against yourself. So it kind of scratches my itch a little bit. So that's been my COVID pivot.   Stacey Simms  13:14 That's awesome. I've been playing golf since I was 22. So I'll take you out sometime when we got   Rob Howe 13:18 ready to say no more. I'm ready.   Stacey Simms  13:22 You know, one of the things that really made me smile in the last couple of weeks was that terrific video you posted. Your it was it was announcing the partnership you have with Medtronic now but the video itself was so great. It was you know, if you haven't seen it, we'll link it up. How would you describe that like an athlete grabbing a sponsorship or getting recruited for a team?   Rob Howe 13:42 Yeah, you know, I, I was stuck on this concept of signing day. And this announcement, this announcement kind of felt like that. And for me, you know, I've worked with Medtronic for a number of years as an ambassador as a consultant. And now kind of deepening that partnership into a more formal role. It just came to mind. And I thought, you know, this is true to who I am as an athlete, and seems like a fun way for and you know, that's a big part of what we're working on together is doing some outside the box, maybe not traditional Medtronic type announcements. And I would classify this as sort of in that realm. And I'm just very fortunate that my team and Medtronic is so on board with hearing sort of outside the box ideas. And so getting to produce this fake press conference about my signing day and learning that there are no Medtronic hats and having to get a Medtronic hat made for me to put on so now I have like the one on one of one Medtronic cat, which I love. It was really cool. And the response was great. And again, I just I'm glad that my team didn't roll their eyes at the pitch. They were like, Oh, yeah, this actually sounds great. We'll we'll do this. And I can only imagine as it went through legal what legal was thinking of just reviewing that video, so very fun. That is funny. I   Stacey Simms  14:48 think I have one of the remaining animus shirts left in existence from what I used to do appearances for them.   Rob Howe 14:54 Yeah, you gotta gotta save that merge. It's like it's retro. You know?   Rob Howe 14:57 That's really funny.   Stacey Simms  15:04 Right back to Robin just a moment, but first Diabetes Connections is brought to you by g Volk, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Jeeva kaipa pen comes in. It's the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give GMO correctly. I'm so glad to have something new, find out more, go to Diabetes connections.com and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma visit g VOCA glucagon comm slash risk. Now back to rob, and he is talking about new technology that he's looking forward to.   Rob Howe 15:52 I'm very excited about the integration of the phone as the software back end to the pumps and the devices. I think that adding diabetes technology to the Internet of Things is a huge milestone in healthcare. It's a huge milestone for people with diabetes. And it's just going to make this whole user experience more intuitive. I think the DIY loop community has shown how you know how powerful it can be when technology and people helping each other and really dialing in features that they need and that are important. And working with some of these larger manufacturers, I think kind of opened up this Pandora's box of questions for these bigger companies to ask themselves are our technologies right for our customers, are we meeting them where they are, and I'm sure as you encountered in your conversations with Medtronic, that's a big focus for them right now is meeting patients with diabetes where they are. So you know, you've seen this year now the acquisition of companion medical, to bring multiple daily injections into the Medtronic suite, which previously they were a pump company. And I think now they're really focusing themselves on being a diabetes technology company, which is cool. And I think it's good for patients good for Medtronic good all around?   Stacey Simms  17:01 Well, it's interesting, because for years, people were saying, you know, this stuff's got to look better, you live with it, it's on your body, you want it to look less like a medical device. And there was a lot of pushback from people within the community, as well as on the technical side, who were saying who cares, just make it work better. And I think we are at a place now at a point now where there is enough, even though there seems to be fewer pump companies, there's enough competition, that they do have to look good, they do have to feel better. I mean, I don't remember what you used when you were first diagnosed, but it's changed a lot in the Gosh, in the almost 14 years I've been he's been using an insulin pump, it's not a brick anymore.   Rob Howe 17:35 Right, it doesn't have a Gameboy screen, it doesn't look like a calculator, you know, I think all that really comes down to me is just user experience in general. And you look at iPhone, for example, and the transformative qualities that that piece of technology has had on society in general. And I think that that is sort of the the gold standard now and that filters down to healthcare companies, something that we talked about in my agency world is that, you know, most people, when they think of competition, they think of, you know, immediately in their industry, their top two or three competitors. for consumers, they don't look at it necessarily that way, they're looking at you online as your competition is Apple, and Chase, and Amazon. And if your online experience, if your device experience doesn't mirror those, and isn't on par with those companies, which is really unfair for a lot of businesses, a lot of brands, because they're they don't have the ability that or the scale or the infrastructure to deploy at that level. But if you're not on par with those companies, users will tune out, they're looking for best in class. So I think that's been a big shift for all the major diabetes technology companies, and I think outside of diabetes as well.   Stacey Simms  18:40 Alright, let's move on just one of those other issues, you and I saw a conversation online that we wanted to talk about, I think this was mostly on Twitter, where the word disabled or disability, it's interesting when using that with diabetes, because Ben, he was diagnosed before he was two. And all I heard for this first few years was he can do anything, it's not going to stop him. But then you get to school. And it's like, he needs a 504 plan because he has a disability. And he's covered. I have my own take on it. And I'm curious what you think is the person who lives with diabetes? Is that a bad word for you?   Rob Howe 19:11 You know, that's really interesting. I seen that conversation. I think I want first of all people to know that I see both sides. I think I see people who argue on one side or the other. I you are seeing and I think for me, it's very similar to your story of Benny, you know, I was told from the get go from the jump that whatever dreams you have for your life are still within reach. I have perpetuated that idea at the beginning of all of my talks, all of my messaging, I believe I'm living proof that you can do things with diabetes if you want to and take care of yourself. I mean, there's other factors involved, obviously, but at the same time, I think denying the fact that you're disabled denies all the hard work that you put into your life to stay alive every day. And let's be honest, I think none of us would put the amount of work mental, physical, financial into anything else that we put into diabetes without compensation, expected compensation or some sort of like just reward you know, and I think that's really where it nails home for me is like if you factually like scientifically, under the Americans with Disabilities Act or the ADA, people with diabetes have a disability. That doesn't mean that you can't do the things that you want to do. But it also doesn't mean that you're not disabled. And what really reinforced this for me was a few months ago, there is a documentary on Netflix called Pistorius, which is about Oscar Pistorius, the Olympian who was born with defects in his legs, and he runs on the Nike blades, the legs that that allow disabled runners to run. And he competed not only in the in the Paralympic Games, but also against non disabled athletes. But in this documentary, and obviously, tragically, he murdered his girlfriend, killed his girlfriend, and you know, is on permanent house arrest, I believe it was so interesting to see the rhetoric by which he referred to his situation, his disability, and he's like, I don't identify as disabled. And that was something that I think, in the early years of my life with diabetes, when I was a younger man, less gray hair. But I identified with that I was like, I don't want people to treat me differently, I want to show them that I can do this. But when you deny that disability, again, when you when you close yourself off from things like diabetes community, when you close yourself off from benefits, like your 504, when you close yourself off to identifying as disabled or taking advantage, God forbid, you don't take advantage of the concessions that have been granted to you because of the struggle and the burden that you're carrying because of this disease. You know, I think you close yourself off to all the work that you're doing. And that's really where I want people to know that like, hey, yeah, I at face value, am a fit, athletics, successful, quote, unquote, successful person with diabetes, but I very much identify with Own your disability, that doesn't make you and I think there's a lot of conversations about ableism that I think we as a culture need to do better about because I think you alienate people who are disabled by saying, Well, I'm not I don't identify as disabled or I have a disability, but I'm not disabled, I think those are our negative, you know, negatively affect people who you know, really identify as disabled. So I want to say like, I Rob, how professional athlete, you know, the guy who goes and speaks and it's like, you can do whatever you want, I identify as disabled, I am disabled, I have a disability, that doesn't mean that I'm not going to wake up tomorrow. And if my blood sugar's high, I'm just going to quit and be like, you know, what, sign our team, but it What it does mean is that I see you out there struggling, the burden of diabetes is taxing, I feel you, I see you. And I think it's better for all of us to just work harder on accepting the fact that with diabetes, you have a disability that allows you some advantages, and allows you access to some things that people without this disability don't have access to. And to deny yourself that is, I think, a disservice to yourself.   Stacey Simms  22:57 It's such an interesting topic, because you really centered on what bothers me the most about it. And that is that as a society, we look down on disabled people in our language and our actions, it's just baked in. And it's come out so much better in the last few years that we're even able to talk about it. You know, even in the elections, I never thought about that. You know how we don't help. We don't even make it equal access for people with disabilities. And so there's this whole society burden of not wanting to admit that we have anything wrong with us, because then we're stigmatized, it doesn't even it's not even just diabetes. But I also think that, you know, trying to raise a child with type one, many would never say, I don't think he would say even today, and you know, it's not it's his voice is not mine to speak for, I don't think he would say I have a disability, I don't think he would raise his hand like you were doing. But I do think that he should, because all of the fights that have gone before, you know, it's easy, or it's easy, it's never easy, but it's easier to be a elementary school kid or a middle school kid. Now with a pump or a CGM. And with all the education and with a 504, than it would have been in the 70s, or the 80s, when a kid was doing shots and couldn't leave to go to the bathroom, and we've heard all these horrible stories or an employee back then it wasn't protected. And I will say he's had an easier because he has a lot of access and a lot of privilege, you know, these words that we throw around, but he really does. He's got me as his mother with a big mouth and a microphone. But also, you know, I guess I'm trying to say is all that work that went into protecting people with disabilities, as you said, it's really important to honor now, and to understand that if you're a cashier, and this happened in North Carolina, and in other states, leave your cashier at the Piggly Wiggly, and you need to treat your blood sugar with juice, and they won't let you you're covered. You're not gonna lose your job, we're gonna get paid back. And that's the kind of coverage that I think we need to think more about. But I will tell you a funny story about how I didn't help me and I stand by this when we went to we've gone to Disney World many times never been to Disneyland. We live on the East Coast but we've been to Disney World many times. We've never used the disability pass or the guest assistance. Pass or whatever they call it. The reason is, because when we first started talking about it, it was presented to us like a reward. It was like, Oh, you have diabetes, you have this great thing, and you can cut all the lines. And it wasn't presented to me as, hey, Benny might have a low blood sugar or might have a high low blood sugar, you know, high situation, you might need it. And I said to myself, I'm a crazy Disney planner, like, I am good to go. We don't wait in lines, whenever because I plan it. I'm, I love it. So we never did it. And I've talked about this, I was called out on it at a conference, once we're just having a casual conversation, and somebody in their 20s said to me, you know, you're doing him a disservice, because you're teaching him that he shouldn't take advantage of what's out there. And I said, Well, he shouldn't because it's not a reward. And she said, it's not a reward. It's not like a golden ticket, it's there if he needs it. And if you don't need it, fine. But if he needs it, when he goes, he shouldn't feel bad about using it. And she reframed the whole thing for me, and we still haven't had to use it. But I have definitely been less judgmental, and Kinder about other parents that I know who have used it. So if you're somebody that I've, I've been snarky too. I apologize. That's what I think   Rob Howe 26:05 that speaks to your capacity to learn, Stacy, I mean, you know, we all this would be shocking, probably not to no one. But we don't always make the right decision. You know, and we learn new information. And we reframe conversations. And, you know, I'll piggyback on that I, when I was younger, I was traveling a lot for basketball. And I like to get on the plane early, because I was like, Oh, I'm flying Southwest, I'm in the the B section, I'm not going to get a great seat. But since I have diabetes, that's, that's all good, I can go get whatever seat that I want. And then I stopped doing that. And I did that bait for a couple of reasons. I think consciously, I would see people who needed real assistance to board the plane early. And I wanted to be respectful of their space. And whether it's wheeled wheelchair access, or, you know, just extra medical supplies, I find that the you know, like the the accommodation that is made on airlines for people with diabetes is mostly to make sure they can get their medical supplies nearby on with them. And I, for the most part, my supplies, because I'm a dude probably are always a smaller footprint than some of my lady counterparts. And also, maybe I'm just a little bit more of a free spirit and be like, Hey, you know what I'm going to take, I'm going to be out of town for a week, I'm going to take two or three infusion sets and a couple of miles Insulet in my backpack, and we're going to go for it. So it was always close by to me anyway, and all that to say I don't do it today. But I know it's an option. And if I feel like the flight is oversold, or I'm gonna have to make a quick connection, and I want to make sure that my medicine is within reach, I will take advantage of it because I know it's there. And I think having that knowledge and being willing to accept that assistance except those accommodations. And and knowing that that space is available for you is positive. Yeah,   Stacey Simms  27:51 I mean, for me, as I have learned and changed my mind, and I probably will continue to my philosophy is now if you need it, or think you might take it, it's there to help you if you think it's going to you know it be if there's someone else's more need. If you know you don't need something, right. It's like parking in a handicapped spot. When you really don't need it, you're driving your grandmother's card, it's got the ticket on it, and you're just like I'm in a hurry. Don't do that. Right. But you know, but if you need it, use it. And don't be embarrassed or ashamed. And I hope all of you don't even know how to if I'm even saying this the right way.   Rob Howe 28:27 I think there is there is shame wrongfully pointed out, people who look. And I think that's back to that sort of ableism narrative perpetuated in this country. You mentioned like the election. I'll give you another example. Governor Greg Abbott in Texas is in a wheelchair. He had a there was an accident when he was a child, and it caused him to be paralyzed from the waist down. So while I don't agree with a lot of the things that he does, politically, I stay away. And there's been a very big movement online of people who disagree with him, staying away from the low hanging fruit of making fun of his wheelchair, and his disability, because that's not what makes him make poor decisions. from a policy standpoint. That's just the easiest, most that's just like a kid, when you're young kids pointed the first different thing that they can see. And oftentimes, that's very hurtful. But we are adults. And we can see that, you know, that that's unproductive. And I think, again, coming back to not not alienating anyone who has a disability. It's it's more focusing on policy and actual, you know, politics in the case of Governor Abbott that are detrimental to what's going on here, not his disability, I think his disability is completely off of the ballot.   Stacey Simms  29:37 Yeah, it should be it really should be in the diabetes, so much of what you all deal with is invisible, or, you know, you're able to make it invisible. So it's even harder in some ways. So I don't know. And I   Rob Howe 29:48 mean, I think even even on that point, there seemingly is a stigma to, you know, letting your diabetes be shown. And I think there's a lot of people who share they're now very proud of their cgms they're proud of their pumps. To wear them out. They're proud of sharing their numbers on social media. I you know, I get a lot of laughs from people sharing your 69 blood sugar's with me and, you know, I think that that sort of empowerment and saying hey I can I can be publicly facing with this and there's a community with that is great because, you know, look at me I'm like the poster child for some of the negative achievement culture things around diabetes I am you know, handsome white guy who used to have a six pack and you know, got to play sports and live his best life. And you know, he's not held down by his diabetes and what you don't see our bloody sights. And you know, all of the adhesive that you got to wipe off your arm after you change the site, or, you know, the feeling of less than after you're at a pool party pre COVID, and your site got too wet and you got pulled out really easily and you have to go home, you know, or just waking up on a vacation with a high blood sugar and it ruined your day. Like, those things don't always get shown. And I need to be better about sharing some of those low moments personally, on our platforms. But you know, just because you're not you don't look like a Olympic endurance champion with, you know, hollywood abs and a great tan and you know, living in your best life always time in range at 100%. If that doesn't sound like you, that's super okay. And I see you and that doesn't mean that your life with diabetes is less than I think there's there's downsides. And I and I've benefited a lot from achievement, culture and diabetes, but my love, I'm an I'm an achiever, that's what I try it. That's, that's sort of wired into me. And, you know, as I get older, I learn more about myself and why I do things. And I love following the rules. I love having a structure so I can try to achieve that's just what speaks to me.   Stacey Simms  31:40 Wait, I need to ask you though. Okay. I love everything. You've said, achievement culture, though. I'm not up on that as the world's worst diabetes. Mom. I mean, I'm kidding. But you know, I'm all about mistakes. And that's been my platform. And I mean, my brand, I have to call it that. But that's truly how I parent and I've never gone for more I'm what does it cheapen culture mean? Is that that you can do anything? Or I'm only showing the beautiful stuff? or What   Rob Howe 32:04 does that mean? I think that's part of it. I'll reinforce something that I'm sure will speak to you, in a way think about podcast guests. What's more interesting to someone who like at face value, we have two people, we've got a mom with three kids who gets her kids to school on time, leaves with diabetes, and you know, is just juggling a regular life. Or we have you know, two time Olympian bobsledder who, you know, has been around the world 50 times and you know, has been on the ESPN body issue or whatever the case, right? So at face value as a journalist, who are you going to pick for the more juicy story? Yeah, the bobsled guy, the guy, the boss like guy. And I don't know, any type ones that bobsled. So I think it's a good sport, because I'm not singling anybody out in particular. But I think as a diabetes community, I have also been guilty of like, Oh, I'm in this position where I can go speak or I can have, you know, people follow me and they follow the podcast, and I get these opportunities to represent people with diabetes. So I got into this sort of negative pattern of thinking where I was like, What do I have to do next? Like, what is my, I've already given my podcast, talk to all these jdrf chapters? Well, they're not going to invite me back next year to give the same talk, I've got to do something else that achieve something else. So like, right now, even the talk that I give is called from professional basketball player to professional diabetic. And inherently in that title, while it is good, and people click on it is ableism. And it's like, oh, you're only worth speaking at these events. If you achieve something crazy, like proven playing pro sports. And I think I'm really trying to be more aware and more, not cautious is the wrong word. But just more mindful of the things that I say and the things that I do that are rooted in an achievement culture that rewards extraordinary feats, and also tends to erase living a normal life and making that unsuccessful.   Stacey Simms  33:56 I'm going to arm chair psychologize on why it didn't resonate with me, moms aren't allowed to have achievement culture, we are not allowed. And I'm using that term very loosely, because Screw it, I'll do whatever I want. You won't allow me. But truly, if my brand was the best diabetes, Mom, I got it right. And you don't or professional mom, right? You're not going to see anybody talking about that, because we don't talk about moms that way. And I think that's, I know, this isn't about me, I'm glad to have you on as a guest. But I couldn't help but share that because of what you said, I was thinking to myself, How on earth would I achieve something like that? Or what can i and it's really interesting to think about it in those terms. And I think a lot of diabetes moms, what resonates with us is you know, oh, I'm the worst I made a mistake. I'm failing my kid, I got a report card. You know, it's all this negative talk. And that's a problem in and of itself. And you got other things to work on. You got to worry about. I'm succeeding. I'm great. You want to bring me to talk because I'm doing so well. It's so fascinating how we can do this.   Rob Howe 35:00 You know, and I think too, you know, speaking to diabetes moms, which I love, and I think that's a demographic of people, I never thought I would get to meet as intimately as I have. And, you know, I think people like me, and people who achieve are great to show to kids, you know, because hey, look at look at Rob, he's living his best life. He has a podcast, he talks about diabetes, he's not embarrassed. And I live for those moments where I can be the person that I needed when I was 16 years old, and have somebody who's accessible and wants to give back and wants to have those hard conversations and can say, you know what, I do see you man, like, you know, your 16 year mom doesn't know what's going on. You don't want to talk to her. And somehow I managed to remain young looking enough that I can communicate with somebody, hopefully,   Stacey Simms  35:43 you when you talk, you're like with Newsela What are you like, 30?   Rob Howe 35:46 I'd like 32. So yeah, I mean, I see. But you know, Stacy, you're not on tik tok. Right, you know, you know, if you put me on Tick tock, I'd be so canceled. I can't dance. You know, I mean, so I think for me, I just want to try to remain like as tuned into what people with diabetes are going through, that they may not even be aware of. And I think this is in this sort of chronic, all the chronic things that we're juggling, I think chronic focus on achievement, within, you know, some of the diabetes online community cultures is important for us to call out and I think I've benefited from it. And it's important for me, it's important to me, that I make sure to bring people in, who maybe haven't benefited from it and use that to highlight important stories, because you know, what's crazy, and surprised me back to the podcast example, when I first started, and I was really, really digging into what episodes are resonating with people, the one that was far and away the most resonant of my first like 15 episodes, was really the most simple basic, it was a story of a type one mom and how she prepared for her first and second pregnancies with T one D. And, you know, for me at the time, like a 27 year old jock tech bro. I was like, you know, it was a great conversation. And my my friend, Lindsay, who's my friend in real life, did an amazing job. But I never would have guessed that that would be the one that would have taken off of the first group. And it wasn't necessarily the achievers. It's the people who achieve in spite of there being no big reward publicly.   Stacey Simms  37:15 Yeah, well, I think we need and I know you'll agree with this, we need everybody in this community, right? We need the people who go up Mount Everest meet the people sitting at the desk job. But what has resonated with my listeners is anybody they can learn from. And I think it's interesting. And especially at first you want those high, high achieving successful people, those Olympians, and those rock stars, because as a parent of a kid, you can look at this person and say, Okay, this person was type one is super successful. So my kid probably has a pretty good chance of being a mid level executive, you know, at Staples, or whatever, right? They're going to be okay, or IBM, I shouldn't, whenever IBM even exists anymore, I'll show my age. But, you know, we do need those other people who have shown us how it's done something as complicated as a pregnancy with type one to something as simple as, it's not really that simple. But how did you transition from elementary school to middle school with your kid, right? Those are the things that we all want to learn. And I think what's really cool about social media, and somebody like you who's you know, super big on Instagram, and all that stuff, is you get to show, as you said, the cool looking stuff, but you know, it looks great, it looks perfect, but then it's also a chance to show all those crummy site changes. And those days when you don't feel good. And you don't have to polish it all up. I mean, you just snap a picture or talk about an Instagram. And you do that all the time. I think it's great.   Rob Howe 38:29 Yeah, it's new. You know, I think maybe I've even mentioned it before in this pod. But in 2018, at ADA, I found this poster board study in the in the poster Hall, talking about the ANC outcomes and involvement in the diabetes online community. I mean, just that sort of osmosis of encountering people with diabetes on a regular basis, and the things that they do makes you better at diabetes, I don't know. It's just it's normalizing. And I think that's what's so important, and what the Internet has brought. And I think even still, I'm even more learning about sort of the micro communities and diabetes, where you're able to find people that look like you people that are interested in the things that you're looking for. And otherwise, like, where would you find those people. And you go back to when Benny was diagnosed, you basically had the only people in your immediate area were the people that you could stay in contact with early blogs, maybe kind of just starting to sprout. And now you can just go to some of these big diabetes accounts and search for people or look on the hashtag and look at the locations and say, well, wow, there's somebody with diabetes there. You know, I got to be a part of this really great campaign this summer with express a global brand, you know, and   Stacey Simms  39:34 Oh, yeah. Wait a second. Wait a second. Tell me about that. Because that wasn't diabetes, you're like this, like a model? I mean, right. Or model. What was that? That was amazing.   Rob Howe 39:42 I can I guess I can put like publish model on my resume. Now. You know, what's cool about that campaign, and first of all, the Express team was really great to work with. They're all pros. And I think just hearing sort of the creative outline of what they were trying to do as a person with diabetes as a person with a disability as a person with something that makes them different, was just really cool to be there representing people with diabetes. So they sent out like a cold casting call, it had a bunch of stuff, as you know, or maybe not like, I'm very interested in fashion, I love style is something that I just I don't know why you   Stacey Simms  40:16 post your outfits on Instagram,   Rob Howe 40:19 feel free to gather fit pics are my thing. I love them. And you know, my wife and I are currently you know, just having a turf war over who needs more closet space. And I will not lose, I will not lose that, that I just don't put it on put on record. But the cool thing about Express was they said, Hey, we're looking for people who are on Instagram, but it's not a requirement. We're looking for people who have some sort of social good or community type. It's not required. We're looking for people who have an interest in fashion, but it's not required. And I was like, wait a minute, I have all three of those things. Let me like really try to get this. And so it was a cold call. I put together a pretty good application and response. And then I set it and forget it. And like it was 90 days later until they got back to me. And I sort of put it out of my mind. And they said, Hey, Rob, like, we're really excited to have you part of this campaign. Like, can you talk on this day? And I was like, wait a minute, did I book it? And they said, Yes. And so it was really cool to be able to out a big panel. I know, first of all, I was all over the world. inexpressive. I mean, it was a year of COVID, obviously, so not as many people saw me, but like on the front page of Express calm, very visible. And I was not just a model, I was representing myself, I was like Rob, like, hey, Rob is the Express model, and he lives with diabetes. And that was something I had never experienced on a mainstream level before. It's one thing to go to these diabetes events and celebrate those all together. But to be different on a panel full of other amazing superstars, frankly, like, who have achieved way more than I have. I was there as a person with diabetes. And I got to talk about like at base level what type 1 diabetes is and talking about the insulin affordability and talking about what it's like to have an insulin pump attached to your body at all times. And to see people be like, wow, I had no idea about any of that was just really cool to be a part of and like tan France from queer. I was the host on one with tan France. It was unbelievable.   Stacey Simms  42:07 Was he nice?   Rob Howe 42:08 Oh, yeah. Oh, how can he he's like he was so giving. He seems like the nicest guy, an absolute Pro. And honestly, I've done a lot of interviews. I was admittedly not really super nervous for our conversation today. Because I know you and I figured it would be nice and easy, but I was like sweating bullets. Getting ready in my like this in this office in here for 10. France. I was like, like, What's my name? Like? What do I do just like to make sure I don't stumble, you know, but it was a really awesome experience. I'm so grateful to have had the opportunity. And, you know, hopefully it's the the first of many. That's awesome. You know,   Stacey Simms  42:39 I worked at Express. When I was in college, I worked at the express in the carousel center mall in Syracuse. So if you shopped there in 1991 or 92, I helped you out. Not you, Rob, you're looking like you're looking through the time. You were not there. It might be wondering. Well, the   Rob Howe 42:57 thing I was actually thinking about is my wife was born in Cheryl in New York. So he was born in 1991. So maybe her mom this call   Rob Howe 43:05 is over?   Rob Howe 43:06 Yeah. Yeah, sorry. Technical difficulties were not cut off. But yes, my wife is a is younger than I am. Which is really funny. And yeah, that's a small world. I didn't know that. You had the upstate New York time?   Stacey Simms  43:19 Oh, yes. I went to Syracuse University. And then my first job was in Utica. And then I moved back to Syracuse for my another job. And then I came to Charlotte where I am now. I was up there for 10 years in the snow.   Rob Howe 43:30 Oh man. very snowy. Very Yeah.   Stacey Simms  43:31 But I grew up. I grew up in New York, so not too far.   Rob Howe 43:33 People were asking me like, so do you shop at Express. And I said, You know, I haven't shopped there recently as much. But when I was getting my first job, and I needed to get rid of my college, bro clothes and like, put on some real professional clothes I went to express so it was like cool to be like, oh, they're like, yeah, like, that's a big part of the consumer that we're trying to reach. And you know, really people who have an interest in fashion, this is a first step for them. And it was it was cool to be very, I felt very seen and very, the team that express was awesome.   Stacey Simms  44:01 That's terrific. Yeah, I worked there. And then I got a job at a radio station in Syracuse. And then that was the end of that. never looked back and worked weekends. Why are   Rob Howe 44:09 you found it you found your Yeah,   Stacey Simms  44:12 I knew what I wanted to do was very cool. Are you going to be working on things like that is modeling something you would like to continue to pursue or the fashion industry?   Rob Howe 44:20 Yeah, tell me what you're advertising I do to being a model for Express wasn't on my vision board for 2020. But I don't know, it was cool. It was just just to be a part of it to, you know, be in front of camera. Like you mentioned, I work in advertising and have been parts of shoots like this, behind the camera and working on the campaign and working on the creative direction, but to be in front of the camera and kind of collaborate with people whose jobs I know intimately. And it was a very small crew because of COVID. And they came they came to Dallas and it was cool to just be able to be in a small collaborative group of people who like I was just a photographer, the director and the videographer and myself. And we just got to hang out all day and talk about ideas and be creative and Yeah, I think I would love to do that again.   Stacey Simms  45:01 Nice. You know, we've been talking for a long time, I didn't even ask you or congratulate you on your wedding, which happened this year. Yeah. So congratulations on that. That's Thank you big, big,   Rob Howe 45:10 wiseguy big fan of my wife.   Stacey Simms  45:13 Good to hear good to hear what's up with you all in 2021. I mean, you're moving ahead with Medtronic. Moving on with the ad agency, you are married, man. I mean, 2020 was a difficult year, let's admit that. But any anything on top, I think I'm almost afraid to plan for 2021 in a way,   Rob Howe 45:29 me too. I I don't want to get too far ahead of my skis, you know, I think we are still a ways away of putting COVID completely behind us. And I also want to be very present in like, how What a tragedy it is. And I think even personally, within my friend group, there's been some very recent developments that are just awful. So I think we need time to heal. And I think we need time to, you know, mourn sort of our old selves, you know, like it or not one way or the other, we're all different because of 2020. And hopefully, we can build sort of on the ashes of everything and be better to each other longer term. We got some cool projects. I think this this question came from Peter from the, from the Instagram story that I posted the other day. And, you know, we're I have a cool series that I'm working on called more than a diabetic, which is going to be debuting next year with some awesome community members. So that's up first. You know, in terms of brand partnerships, obviously, Medtronic has a couple other long term partners that I've had that I want to do some deeper, cooler campaigns with, I'm sort of in a, I don't need new stuff I really want to care for and sort of nurture my existing relationships. And my existing, I don't know whether partnerships are you know, I have my a lot of irons in the fire, I don't need more irons, I need to just really focus on you know, my relationship with my wife, my relationship, my family, my my two businesses, and really focusing on being a good steward of what we have and continuing to do, right for people with diabetes. That sounds like a great plan. I want to have some fun, you know?   Stacey Simms  46:55 Yeah, definitely. And hopefully, we can see each other again and travel a little bit towards the end of the year. And I would just love that. That would be wonderful for me.   Rob Howe 47:03 Yeah. If I want to manifest anything for 2021, I put my hands in the air because I'm manifesting this my manifesting. Okay, if you're listening, you're missing out. I want to go on a honeymoon with my wife in 20. Oh, love that. That would be a fun thing. Travel, you got my wheels turning, I love to travel. And I have missed that sort of being held down at the house this year. So Excellent. Well,   Stacey Simms  47:22 I hope we can do that. I'll keep you posted on anything I can help with. Thank you so much for spending some time with me, Rob, it's always fun to catch up. And you caught me, you know, me talking more than I usually do on these interviews, I think but thank you.   Rob Howe 47:33 I like that. I think it's just the my inner interviewer. And, you know, thank you for all the work that you put in Diabetes Connections. I think when you're a diabetes mom, there's so much work that goes into that anyway, and I just applaud people like you. And then frankly, there aren't that many like you at this point. You've been doing this a long time and do a great job. So I hold you in high regard. I'll just leave it at that you do a great job and I appreciate you.   Stacey Simms  47:55 Well, that's very good. Thanks, Rob.   Announcer 48:02 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  48:08 I'll link up lots more information about the topics we spoke about, especially the Medtronic pump if you'd like more information on that, and you can go back just a couple of episodes. We had the folks Medtronic on in the fall of 2020. To go through all of the details. I'll link that up in this episode as well. And I'll put a link into Rob's Instagram where you can see everything we talked about. He is quite prolific on Instagram and his wonderful wedding photos, the modeling, even the Medtronic signing announcement that I kind of teased him about there. It was great to talk to him and I hope it was okay that I talked so much. It was odd to be on the other side of the microphone, but it was fun to hopefully you enjoyed it as well. We are going to have my favorite segment of the week coming up Tell me something good. But first Diabetes Connections is brought to you by Dexcom. It is so hard to believe with Benny 16 years old now, almost six feet tall that he was ever a toddler. And I mean it was also just like it was yesterday. It's bananas. When you have a toddler diagnosed with type one. You do hear rumblings for a long time about the teen years people start scaring you about that right away. But when it hit us at full force a little early, I was really glad we had Dexcom Benny's insulin needs started going way up around age 11 and along with the hormone swings all the growth, I cannot imagine managing diabetes without the dexcom continuous glucose monitoring system. We can react more quickly to highs and lows. see trends adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's agency and his overall health. 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 Just go to Diabetes connections.com and click on the Dexcom logo.   I got a bunch of Tell me something good submissions this week. So if you are not featured and you popped one into the Facebook group. Please stay tuned I will be sharing them in the weeks to come. Corinna posted a great article from Washington and New laws taking effect this year from Washington State caps the cost of insulin at $100 per month health plans issued or renewed after January 1 2021. Must cap Insulet co pays deductibles and other forms of cost sharing at $100 per 30 day supply. I'll link up that article and I do think we're gonna see more and more legislative action this year and next year when it comes to insulin so Corinna thanks for sharing that and Corinna’s blog also got an honor. Recently, she writes type two musings, and she was featured in an article on everyday health about the top type two diabetes blogs to watch this year. So I'll link that up as well if you haven't checked her out. She's a longtime advocate and blogger in the diabetes community. Thanks for sharing that. And just a little good news from Carol Who says I discovered the secret to five sites use six millimeter cannula instead of nine millimeter, whatever works. The thigh site is one that Benny has struggled with. He just does not like it. He's done it here and there over the years. And you know, it's just not his favorite. So Carol, I'm really glad that that worked. You know, we used a longer canula for a while and if you're not familiar for not a pumper. So the canula is how the pump gets the insulin infuses the insulin under the skin, you have usually an inserter of some kind, it puts a needle under the skin immediately withdraws and leaves a tiny canula six millimeter or nine millimeter under the skin where the insulin drips through when Benny was 10 or 11. And we kind of noticed his insulin use going way up. We didn't really think about the cannulas and the insets being overwhelmed. We thought well, maybe we just need to use a longer inset maybe it's a problem with scar tissue. And we switched to the nine millimeter for a couple of months. It made zero difference for him. It was one of the things that led us to untethered, which if you're new to the show, we used a combination of long acting and pumping for two years when Benny's insulin needs went way, way, way up. And it took a lot of the strain off the inset. It helped him measurably it was just wonderful. His insulin needs have gone down. He is 16. He is coming out of puberty. And so we are off untethered. But I didn't mean to be under there, Carol. Sorry. Thank you so much for sending that in. And I'll add something good in that Benny has started back with wrestling practice. Now this season is going to nothing like any season in the past. I'm not sure they'll ever even actually wrestle for the rest of this school year. But we're back practicing. They are either indoors with masks, I think when they're outdoors, they're wearing masks depending on where they are and how close they are together. But he is really psyched to be back with the wrestling team and working hard. And he's really been working hard all this year. And I'm really proud of him. I don't like to say too much. I'm very superstitious. I'm knocking on wood even as I'm talking, which is why I don't brag about him more. But isn't that ridiculous, but I am superstitious, but he is doing well. And it's cool to have the wrestling practices back again. So that's my Tell me something good. Please feel free to email me with your good news or post in the Facebook group when I ask and just tell me something good.   One of the conversations we had in the Facebook group recently was about predictions for the new year. And I meant to give mine during the last episode, I want to put this on tape so you can laugh at me. We can play it back next year and see if I cut anything right. So here were my predictions. And this was about diabetes technology. I'll go big. I think we're gonna get Tandem bolus by phone approved that has been submitted according to investor calls, I think we're gonna get that approved and rolled out by third quarter of 2021. I think we're gonna get Dexcom g7 approval and rolled out by the third quarter of 2021 as well, that one I don't think has been submitted yet. So that one might be a little bit more hopeful. But come on. I do also think no direct to watch. Sorry, for g7 I still think you'd have to use a phone. But I do predict that the DIY crowd will find a way to crack it. And you'll be able to go direct from the g7 transmitter to a watch. That's very, very helpful. And it's also set up with zero knowledge about what it would take to do something like that. Love you guys. I have no idea. I think you're all geniuses. I think we're gonna get Omni pod five powered by horizon. Not until the fourth quarter. I think they're just a little bit behind only because I mean COVID delayed everything and my understanding is that have not submitted yet. Omni pod folks, you are more than welcome to come on the show. I'd love to get an update about that. Let me know. And I do think we'll also see another viable CGM competitor ready for submission to US FDA by the end of the year by the end of 2020. I think it will be submitted.   So those are my technology predictions. I think, as I've said, really, in this episode in many in the past, I think this is going to be a big year for conversation and education about insulin pricing, not just because the democrats are in charge in DC because let's face it, they didn't do anything last time around about insulin pricing, but I am very encouraged by the education and the advocacy. Frankly, the impatience among many people I'm seeing now, I think it is going to be different than last time around. Look, don't misunderstand my comment. Nobody said anything about insulin pricing for 30 years under any administration, it h

Could a new, simple at-home test change the way we look at diagnosing type 1 diabetes? JDRF hopes to make something called T1Detect part of annual health checks someday. Dr. Frank Martin is a Director of Research at JDRF. He explains T1Detect in detail, including what the test is like, what it costs and where the information goes. More on T1Detect Our previous episodes on Trialnet And.. in our last scheduled show of 2020.. Stacey talks about ending this lousy year with a lot of hope. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone      Click here for Android Episode Transcription: Stacey Simms  0:00 Diabetes Connections is brought to you by 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  0:16 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:22 This week, a new simple at home test for the antibody markers of type one JDRF is rolling out T1Detect, something they hope that someday will be just part of regular health screenings.   Frank Martin  0:36 We would like to see this included so that right off the bat, we know how many people in the United States and in the world are at risk for developing insulin dependence so that we can intervene earlier into these people we can improve their health right at the beginning.   Stacey Simms  0:49 Frank Martin is the Director of Research at JDRF. He explains T1Detect in detail including what it costs and where the information goes. And it's our last scheduled show of 2020. I want to talk about ending this lousy year with a lot of hope. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you here we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms, my son Benny was diagnosed with Type 1 14 years ago right before he turned two, my husband lives with type two diabetes. I don't have any type of diabetes, I have a background in broadcasting. And that is how you get this show. And here we are at the end of 2020. I was taking a look back I put out 71 episodes this year, we passed a million downloads, including 100,000 podcast views on YouTube. I talked to people around the world this year, including a mind blowing nine person six time zone game show over the summer, playing Hollywood Squares via zoom isn't something I'd expected to do going into this year. But that is just one tiny example of how we all I think tried to find some good in the great, awful. That was 2020. That's what I've been calling it. I'll talk just a bit more about this year. And my thoughts into next year. And some other news plans I have. I'm going to do that at the end of the show after this interview. So I hope you stick around after that. I don't know about you. But I was really intrigued when I saw JDRF putting out a lot of posts, a lot of ads, really try to spread the word about T1Detect this new at home antibody test. My guest Frank Martin does a terrific job of explaining what it is they're testing for, and why and how it works. I'm not going to do that here. But we have spent a lot of time over the last few years talking about TrialNet and the work that they have been doing in this space. I am a big fan of TrialNet, I will link up more information and the episodes that we've done about their research. And if you're not familiar, real quick, TrialNet does do testing to see if people carry the antibody markers. They are a research study as well, they are trying to learn how to prevent type one. And we do talk about that in this interview coming up. But again, I'll link back to other interviews that we've done. It's been quite a few over the years. And you know, they're likely going to get approval for Teplizumab, the medication that is now shown to put off the development of type 1 diabetes for three years. So all of that to say why do we need to detect, right? Why this and why now, I think Frank does a great job answering all of those questions and more. And also, there is a video version of this interview. I'm doing that more often. And that's why it may sound just a little bit different. As we start, you can go watch the whole thing if you prefer over on our YouTube channel. It is Diabetes Connections over on YouTube, but it's the same interview. It's just your preference. Whether you like to listen or you prefer to watch. I'm talking to Dr. Frank Martin about this new program from JDRF really caught our attention and wanted to learn more about it. Dr. Martin, thanks for joining me.   Frank Martin  4:10 Thanks very much, Stacey. It's good to be here.   Stacey Simms  4:12 Yeah. So tell me a little bit just in general about T1Detect I think a lot of people saw it pop up on social media got it in an email from JDRF. What is it   Frank Martin  4:21 first off something we JDRF we're very proud of our our mission is really around accelerating the development of disease modifying therapies to help slow cure or prevent to one day and towards that we saw that there was a gap there is a need to be able to identify more people who might most benefit from therapies like that. And right now, there's a lot of great programs like great research programs that are doing this places like TrialNet, the asked program in Colorado, there's a lot in Europe as well. But those programs still aren't identifying enough people. So how do we identify more people? We knew that we need To educate more people about what it means to be at risk for T1D, that it's not just family members who are at risk, but I think it's almost 85% of people who are diagnosed don't have a family connection, we need to be able to teach the general population teach the United States and hopefully the world that this is a real issue. So T1Detect really is an education program and awareness program about type 1 diabetes and its risks. And then a very important component of that is making the test available to people. Because right now, they're not really available to people except in the context of research settings, or as people like you might know, in the context of an actual T1Ddiagnosis, when someone's has super high blood sugar, they're in the hospital. And then the doctors will do a confirmation test to see if it's type one, we want to make it available to people who don't yet have symptoms. So hence, T1Detect.   Stacey Simms  5:49 All right, so tell me about how it works. It looks like you get something in the mail, tell me about the test, like the physicality short,   Frank Martin  5:55 short, so you can go and find the test in a couple different places. First and foremost is the JDRF. website, we have access to information and the test kit button on our website through T1Detect, you click the button, it gives you some information about what it is to have to on D what the risk factors are, what are auto antibodies, because remember, we're What are we testing for, we're testing for auto antibodies, one of the major signs and symptoms that people have the autoimmunity, at least a T1D, you click the button you go to the Enable portal enable is the company that's running the test for us fill in some information, we're asking for your name, mailing address, things like that, we're also asking for some demographic information, we want to learn who's getting to end who's at risk, and that'll help us improve the program going forward. And then you come to a choice where you can pay for the test, the test is not terribly expensive, it's $55. To run the test, plus or minus a couple taxes, you also have the option if you cannot afford the test to have JDRF pay for the test for you will pay for the bulk of the cost. I'm leaving you with just a copay. $10. Right now, it's not a feature to ask your insurance company to pay for this, but in the future it will be. So all that being done, the test will get sent to you, you'll get a little box in the mail. And it was pretty simple. I did it. You have a Lancet, you poke your finger. And then you fill in two out of four of these circles on a piece of cardboard, let that dry and send it back. And then a couple weeks later, the company will tell you, you have one, two or three of the type 1 diabetes specific auto antibodies. Alright, so   Stacey Simms  7:34 let me just stop you right there. It's a it's a finger stick, you guys are providing the Lancet   Frank Martin  7:38 in the envelope and the band aid and the gauze. It wasn't very hard. I wash my hands first, there's a little alcohol swab to sterilize my finger. And then I did the test. But one of the benefits of what we're testing for, it's sort of a little resistant to dirt and contaminants. Yeah, I would   Stacey Simms  7:55 think you know, you're not you're at home. You're not in a sterile lab. Yeah.   Frank Martin  7:58 Yeah. So it's been okay. The reason we partnered with enable bio sciences on this particular test kit was because they've tested it a lot in this situation, and shown that when it's performed at home, and I have dogs, there's dog hair in my house, there's all sorts of crazy things going on in your house, it's still met the sensitivity and specificity requirements that we would need to say yes or no, you have the presence of this marker. So we have some pretty good confidence in the validity of the test. In that regard.   Stacey Simms  8:27 I have a lot of questions. Sure. My first is, and we're going to talk more about the test itself and what you're testing for and what you do with the results. But I have to say my first question is, if you're looking for people who are not touched by type one already, right? You want people who don't have it in their families? I have to say, I'm not sure jdrf I didn't even know what that was right before diabetes, why not reach into pediatricians offices or, or other organizations? Or is this coming?   Frank Martin  8:54 So that's, that's a great question. I've two answers. First is, yeah, if you if you don't know jdrf, if you don't know T, one D, it's not going to resonate with you to see now that there's a test available to tell me about that. So there's a huge education campaign. That's part of this. But we're going to educate people through social media, places like Facebook, web and D to tell people in the world who wouldn't normally know about tea, Wendy or jdrf. What this means that's an important component of it. The second is, how do we educate doctors who may not be familiar with tea one day, not all doctors are super familiar with it. So there's a huge healthcare provider education piece, that's also part of this program. That's why this program is not just a screening program. It's very heavily into patient education, population education, health provider education, and all those things are kicking off now. So this week, I think you'll start to see some social media campaigns around it. And in the new year, we'll be rolling out the health care provider education pieces.   Unknown Speaker  9:52 So let's get back to the test itself.   Frank Martin  9:54 Sure.   Stacey Simms  9:54 What are you testing for? I don't know how specific you want to get a scientific you want to get It's not a question of high blood glucose and that sort of thing, right?   Frank Martin  10:03 It's not. So let's take a little step back to the about the biology of type 1 diabetes, the biology of autoimmune diseases. So type one is an autoimmune disease, you know that I know that not everyone knows that it is. And one of the ways we can tell a person who has an autoimmune disease is we can look in their blood for signs and symptoms of that signs and symptoms that their immune system is doing something is not supposed to be doing. In type 1 diabetes, we look for something called auto antibodies. Now auto antibodies are something that that's sort of a general term to all different autoimmune diseases. People with multiple sclerosis have auto antibodies, people lupus have auto antibodies. What we're looking for in type 1 diabetes are auto antibodies that are specific to type 1 diabetes. And what makes them specific to type 1 diabetes is they are specific to things that are in your pancreas. So we actually are looking for three of the four primary auto antibodies that have been determined through many many years of research to be very good diagnostics for type 1 diabetes, they're IAA, IA2A and Gad, 65. Some people may remember those names from trial net or other organizations. But there are three of the four that help us diagnose to end and predict your risk. Now, we're not doing the fourth, but we will soon do the fourth. But based on those three, if you have two or more of those, we know pretty well that your risk of developing insulin dependence is very, very high. In fact, if you have two or more of those in your blood, you already have type one diabetes. So that's something people don't understand. Right? If you have two or more of those auto antibodies in your blood, you already have type one diabetes, you may not be symptomatic, but you already have it.   Stacey Simms  11:46 Well that Okay, so I know people who've gone through trial net and have had two or more of the antibodies and don't don't have well, they have type one as you're saying, I guess, but they don't have the signs and symptoms. Well, how is that   Right back to our conversation in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's what Gvoke HypoPen comes in. It's the first auto injector to treat very low blood sugar. Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give Gvoke correctly. I am so glad to have something new, find out more go to Diabetes connections.com and click on the Gvoke. logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon com slash risk. Now back to Frank, and he's answering my question about people who test positive for the antibodies, but don't go on to develop the classic signs of type one.   Frank Martin  12:59 When we talk about populations and health, there's always people at the far end of the spectrum, those people are at the far end of the spectrum, they don't represent what is normal for the whole population. There are a few people who who have two or more auto antibodies who never become insulin dependent. There's also some people who don't have any auto antibodies who become insulin dependent, and that is type 1 diabetes. It just means that in those people well in the people who are more who don't get insulin independence, there's some sort of protective mechanism going on there that I can't entirely explain right now, in the people who don't have these classic auto antibodies, it means they have something else in their blood that we're just not testing for.   Stacey Simms  13:40 I mean, I know the research isn't perfect, and it's not, you know, exact, but those things are important. Which leads me to my next question, which is what happens when someone gets their results? And they find out they do have these auto antibodies, what is the testing system do for them, so they don't honestly get worried. And that's tough information to get if you're just home in your house opening a box,   Frank Martin  14:01 right? There's a couple things that happen through screening and a to end diagnosis that can be scary one, they're scary, they they can cause a lot of psychological distress to the patients, their families. Also, some people get diagnosed with T1Din a really serious medical situation called diabetic ketoacidosis, which is in and of itself scary, and which in and of itself can cause worsened glucose control over the rest of your life. So there's a couple things we're doing to mitigate all these factors. First, we know that sometimes people get stressed out when they're thinking about getting screened for T1Drisk or when they learn about T and D risk. And we're making it perfectly clear that there are health care providers at their disposal, who they can talk to specifically for the mental health concerns around getting a risk diagnosis. Also jdrf has specific volunteers who are trained in talking to people who have recently been diagnosed with TMD. They've been through it themselves. They can see Say what their journey was like, What is good, what is bad, what to worry about what not to worry about. And that sort of personal communication, that sort of personal support is really important to help mitigate those stresses. And so we're going to deploy those same people, to the people who get a risk assessment from our program.   Stacey Simms  15:17 So and I really appreciate you going through this, because you are a scientist you are, you know, you're kind of going above and beyond, I believe, talking about the mental health and support here, but I think it's so important science to Good point. So when I'm home, I get my envelope, it says you have these markers, here's a phone number to call, or here or next, someone's   Frank Martin  15:34 gonna call you. Okay, so first, you'll get your results, you actually will get an email from enable saying your results are available, you'll have to log into the website to see your results. Now enable the company will know that you're in a high risk category, they will have a medical doctor call you to provide the results to you over the phone and talk to you over the phone, then you'll start to receive a series of messaging campaigns directed to you coming from jdrf saying we understand what's happening, this is what we recommend you to do. A lot of the recommendations are follow up with your primary care physician, you probably should get a glucose test after this, we're giving all the recommendations that we know from our own experiences have helped in the future, we'd like to see maybe a network of care around these people. But we don't have that yet. We don't have the ability to recommend a specific doctor to these people. But we can advise them to talk to their own doctor, we can support them through their jdrf network and give them the resources they need to make this journey as painless as possible.   Stacey Simms  16:37 I have to say, I am so glad to hear that you are not going to wait to be contacted by them. Because you could that was my fear just looking at this as someone who's been through the process. No, you know, when you get a diagnosis, you're not thinking straight at all. So I think it's great that you're gonna be telling we've done   Frank Martin  16:53 this before, right? Yeah, part of the of the benefit that is jdrf is, is we're made up of people who have to end who've been through the diagnosis, who have a lot of experience and support to offer to to new families. And so it's the least we can do in a program like this, to offer that to a person just finding out that they're at risk.   Stacey Simms  17:12 You mentioned the four antibodies, yes, pressing for three, what's elusive about the fourth one,   Frank Martin  17:19 it the other one's called z 28 zinc transporter aid. And it's just a trickier protein to work with. So the assay that the company's using right now just doesn't have that sorted out yet. But they will have it and they expect to have it next couple of months, it's not a big deal to not have it right now, we can almost definitively say based on the results of this test whether or not you'll become insulin dependent over the course of the next couple years, z nta. The fourth one just helps you make that a little more sensitive. And it's just one of the things that we could add on going forward. Right now we're focusing on auto antibodies. But there's other things that jdrf research is trying to develop that might improve our detection of risk in the population, things like genetics, things like metabolic factors that we just haven't the science isn't done yet. In the future, you'll see things like that, I hope being rolled into programs like ours,   Stacey Simms  18:12 when I was tested for I went through testing for trial net when I was young enough to go through testing for trial that but I kind of did it just to see, right we did not have type one in my family that I knew anything of a couple of years later, one of my my cousin's was diagnosed at age seven or eight, which is older than my son. But at the time, we knew nothing. But I never had my daughter tested. Because at the time I looked at it as well, if she's going to get it, I'm going to know the signs. Now. I wasn't worried about decay or anything like that. I wasn't thinking about the research aspect at all. Can you talk a little bit about why trialnet or G one detect why these are important to look at? Not just as Do I have it or not? but more of how can we prevent or treat type one?   Frank Martin  18:55 That's a good question. Well, first, let me say that you speak about why you got tested Why you didn't test your daughter. A lot of TMD parents say that? Well, I'm going to see the signs and symptoms of diabetes coming on before it gets so serious that my child's in a hospital. That's not always the case. Right. Now, we see a lot of people saying that, but the science doesn't support that. So that's one thing. We're trying to prevent a serious hospital event that might occur diagnosis. This is what trial nets doing this is what other screening programs are doing. Second, there's a thought that there there's nothing I can do if my child is found out to have early stages of type 1 diabetes because they have these auto antibodies. And that's not necessarily the case. Because one, we know that there's really important monitoring that can be done in the hospital setting a blood glucose test something as simple as that, that can be done periodically, that could reduce very significantly, the chances of that child having DK also insulin therapy can start earlier because remember, just because you've auto antibodies in no symptoms, that doesn't mean you don't have to end you have T one D. And that means you're going to need insulin therapy sooner rather than later. So it really doesn't benefit people to wait on that. That's something to discuss with your endocrinologist. But starting that earlier actually is beneficial for all people at risk. Third, there are soon going to be ways I hope to intervene. Next year, we may see the approval of the first therapy that can delay insulin dependence in people with type one diabetes, a drug called to plews, a map from a company called prevention, that will be a really important first step in curing this disease and stopping it from occurring at all. And then to get at why would we screen more people, we know that developing new curative therapies for people to end Well, that depends on people participating in clinical trials. Now, I'm not I'm not saying we're doing this, because we want to put people into clinical trials. But the fact of the matter is that programs like trial net and other screening programs here in the United States or in Europe, are not identifying enough people to make these clinical trials go fast enough. That really slows down to development of new therapies for T one D. So one of the benefits of a program like this is to further increase the number of people who are aware of clinical trials. And we hope that that'll increase the development of new therapies. And also pharmaceutical companies will start to see, well, there's actually a lot of people out there clamoring for a treatment or a cure for this disease. Maybe we really need to be doing something about that. So it should get their attention pretty significantly.   Stacey Simms  21:31 We've been talking about trial net this whole time, why not just team up with trial net? They've been doing it. They're the ones that developed the trials for two prism and got it this far, right? Why try something new.   Frank Martin  21:43 So what Tron does is amazing, what they've done over the last 30 years is amazing. They've charted the progression of T one D, and they've led to the development, I hope that the first real therapies for T one D, we could keep funding research studies till the cows come home and have not made any progress towards our goals, our goals of having auto antibody screening as part of normal preventative services, to have auto antibody screening as something that that insurance companies will reimburse for. So what to detect, we hope will do is force those changes into the US healthcare policies to incorporate that into normal preventative services. We're also not restricting our program to certain ages, or to just family relationships. We'll try that does great, it's a really important model to say how can we find the most people the quickest, or the highest risk of type 1 diabetes, and we know that people who have a family member, especially a first degree family member, that has type 1 diabetes are at some of the highest risks in the population. So it's a really good way to quickly identify the most people you can, but it doesn't capture everyone. We're not capturing adults, almost 50% of people being diagnosed are adults. And we're not capturing that in programs like trial net, and almost 85% of people don't have a family member. So we're not capturing that in trauma. So by us doing something like to detect in parallel to trial that we're trying a different tactic that will hopefully get us both to the same goal of increasing the numbers of people available for clinical trials of changing clinical practice guidelines, things like that. And the fact of the matter is, you know, the people we identify in our program, are candidates for trial that hopefully will we feeding that ecosystem as well, with with our program, just to put a cap on it,   Stacey Simms  23:32 it is different, it is distinctive, the testing, I mean, even the trial net, the way that they test you is not a finger stick? No. So it's just a different process altogether.   Frank Martin  23:41 It's a different process altogether. So we also, we want to make sure that our tests had a type of kit or acid that anyone could use, that you didn't have to be near certain place for the test to be done, or you didn't have to wait too long for the thing to come in the mail. So there were certain boxes, we have to check with our tests that we thought were important for making it readily available to the most number of people as possible. And those were things like it had to be a commercial style kit, it had to depend on a blood sample that was really, really small, and really, really stable on a cardboard. Yeah, cardboard piece of paper that's sitting on my floor. My dogs are walking over it, but it's okay, cuz I can send it back and it'll be still fine. So there were a couple things we want to call boxes. We want to tick there.   Stacey Simms  24:26 I went through the website a little bit. I didn't go all the way through it. Okay, I'm curious. I will probably order it, you know, just to kind of see maybe I'll get my daughter to go this time. But I'm curious what happens to the information. You know, am I signing and saying jdrf knows this medical company knows. Talk to me a little bit if you could about the confidentiality.   Frank Martin  24:44 Did you look closely enough at the bottom of your webpages? Of course not, of course, not.   Stacey Simms  24:50 The terms and conditions.   Frank Martin  24:52 Exactly. So that's something that's really important, right? Because what we're talking about now is people's personal unprotected health. information, it's a test result. So we have to make sure that that is safe and secure, and that the person has choice and how that data is used. So you'll see at the bottom of the portal, there's certain disclosures opt in language, you have to agree to share your data with jdrf, or the company enable, we also have if you read the terms and conditions, if you agree to share your data with jdrf, we agree to protect it, we won't let anyone else use it without your permission, we'll only use it to improve the program, or to maybe facilitate future research studies. Because the data is going to come out of this, it's actually really important to see where people live and how old they are, and what ethnicities they are, as it relates to having auto antibodies. That's really valuable information for the research community. So we want to ensure that that data is available to them in a way that protects the person's rights. So pay attention to those little boxes at the bottom. But know that jdrf is working to ensure and will ensure that is used safely and to your best interest.   Stacey Simms  26:12 Well, and I'll give you an example. So in other words, I am great with research, political scientists can have all my data that's fine. And jdrf can have the data. But the last thing I want is for jdrf to say, Hey, Stacey Simms wrote a book. And we're going to give Stacey all of this information for trial on that because here's a whole new customer base for her.   Frank Martin  26:29 So that's not going to happen. We're not allowed to do that. No, if we were given that opportunity, Stacy, we would have the right to you and say, is it okay that we're sharing your data with Stacey Simms? And you'd have to say yes or no, we're making sure we can't do that without your permission.   Stacey Simms  26:45 And we would never share Stacey Simms. She   Frank Martin  26:48 never, never very bad influence. I mean, we know that already.   Stacey Simms  26:53 aside, I'm really glad to hear that that's one of the   Frank Martin  26:55 Yeah. And this is like maybe Jay dress first foray into having access to what could be protected health information. So we have to make sure that the patient's rights are front and center. And that's protected in any way we   Stacey Simms  27:10 can, as we see the rollout of this you've mentioned we'll see social media, you're trying to appeal to more than the the jdrf families, you know, the families that are already at the walks and virtual events this year, what would be your your ultimate goal? You know, personally, would you like to see this in pediatricians offices in the next few years? Would you like to see it at as you say, you know, Web MD, check a box here? What are you hoping for?   Frank Martin  27:32 There's Frank, personally. And then there's Dr. Frank, who works for jdrf.   Stacey Simms  27:37 All right, let's start with Dr. Frank,   Frank Martin  27:38 I actually would say both are the same goal, we really would like to see this as a normal part of preventative health care, so that when you're taking your child to a pediatricians visit, they normally would get a blood test for something at age two or three, we would like to see this included. So that right off the bat, we know how many people in the United States and in the world are at risk for developing insulin dependence, so that we can intervene earlier into these people, we can improve their health right at the beginning, that holds true to children and adults. There's a lot of adults who are mis diagnosed with T two D, but they really have T one D. So we want to make this available to all doctors, not just pediatricians and just become a standard part of healthcare.   Stacey Simms  28:24 I have to ask about cost. I know you've said that you are subsidizing it's only $10 if people cannot pay the 50 or $55. You mentioned but that's still a barrier, isn't it? And is there a goal you mentioned health insurance isn't one of your goals to try to get that covered fully?   Frank Martin  28:40 It is so with our big goal or my big goal and address big goal of having this included in as standard care and preventive services worldwide. That includes reimbursement. So what I almost envision is sort of like inflection point where Jeff and his partner should be able to float the cost of the test. And then eventually, insurers will start reimbursing and reimbursing or reimbursing that we sort of meet in the middle. And cost won't be a barrier. I'm acid that's going to take some time. Stacy, don't take some time. But it's right now people can take the receipt and try and get reimbursed for it. We really don't know how many companies will reimburse for this. And we're expecting that they'll have a lot of inquiries about this next couple of months. And we may have to have some phone calls with some of these insurance companies and deal with this issue. jdrf right now is working with our own insurer, the one that handles jdrf staff to see if they can include this as a reimbursable test.   Stacey Simms  29:35 Yeah, because I'm gonna I'm gonna ask a question. And this is a tough one to ask. And I know it might be tough to answer. But without that, you know, you're going to get a subset of people taking this test, who are largely affluent, who are largely educated, better educated about diabetes, certainly, who are perhaps mostly white, upper middle class, all of those things that we know we need more, you know, we know we need more diversity in research and in diabetes. So I know you know, it's important, but I felt like it's really important that we talk about that. Are you prepared for that that first subset of people that you get to not be as diverse as you would hope   Frank Martin  30:10 we are? I'm not expecting it to be the case. But it could be the case. And so one of the benefits of this program is that we'll see the data, we're asking for demographics, we're looking for where people live. And if they offer it, they'll give us their general salary, ranges, things like that, we'll see how that matches up with who's getting the test. And then this program can pivot, we can then take that information, say, oh, we're not penetrating the right population, we're missing out on a subset of people who might be no socio economically disadvantaged, we need to change the program to better target those people. And we can just turn pivot and do what we can to get those people because our goal is really access for everyone. Yeah. And so we will be consistently monitoring the program to see how we can best target these other populations.   Stacey Simms  31:00 And I imagine there were a lot of conversations inside jdrf, not just about the funding, or the the cost for the people taking the tests. But there's a lot of hard choices going on at jdrf. Right now, in terms of what programs to fund. Before we wrap it up. Why was this one more important than other programs and employees and you know, chapters have merged, it's been a very difficult year. So to have something I got to imagine this was really important to you all.   Frank Martin  31:22 So it's super, super sensitive question. These, this has been a tough year for us, we lost staff, we lost revenue, we had to make some really significant hard choices about what research we fund through all that screening has still maintained a major priority of the organization because it contributes to so many of our other programs that will accelerate disease modifying therapies into people's hands. That being said, this particular program, I mentioned before lives outside of the mission lives outside of the research mission is more community engagement, patient education, things like that. We have a partner on this. So we have a corporate partner to help subsidize the cost of the program. And we're going to solicit hopefully solicit support from other partners to make this sustainable in a way that it doesn't detract from our core mission of funding great research. So I do want people to be cognizant, this is slightly a separate program that jdrf manages, but it's really not impacting our bottom line of fundraise dollars going to the best research. This is stuff that we're soliciting. In addition, specifically for this program, we wouldn't be able to do this without our corporate sponsors, the first of which is prevention. And we hope to add more to the program in the next couple months. This is a disruptive program. We know people have a lot of feelings about this both good, bad somewhere in the middle. If people had those feelings, have those questions, they should reach out to us. We're happy to hear them to learn from them, and maybe improve or modify the program. And we're happy to answer any question. We have high hopes, we really hope that this will make some big changes for the lives of people with to end. And it may not happen immediately. But it should start happening in the next couple of years. We're excited. We hope other people are excited about this, too. Well, thank   Stacey Simms  33:06 you so much for joining me to spend so much time and talk about this and explain it so well. And hopefully we can follow up and find out how it went a couple years.   Frank Martin  33:15 A couple years. couple months. All right. Great. Thanks, man. Thanks for taking the time to talk to me. And listen, if you or your listeners have any questions, send them our way.   Stacey Simms  33:25 You got it.   Unknown Speaker  33:31 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  33:36 If you do have questions, feel free to send them to me. I think I'll put a post in the Facebook group, you of course, can contact jdrf directly, but I'll collect those. And I'll send them to Frank, and we'll get follow up, hopefully. So what do you think of this? Would you send away for it? Would you take it with you have your children take it? And what do you think about getting this to the greater population, I mean, that is where it really needs to be. I think if we can somehow screen for type one like they do in some European countries, they've started these screening programs where everybody of a certain age starts getting these screening tests for type one, I think that would be incredibly helpful for all the points that Frank made. So I'm really interested to kind of follow this and see how it goes. Of course links as always at Diabetes connections.com on the episode homepage, and all the information that you need will be there in the show notes if you're listening on a podcast app a little bit about the end of this year, and a look ahead to next year in just a moment. But first Diabetes Connections is brought to you by Dexcom. And you know, we started with Dexcom back in the olden days before share there was no share when he got Dexcom. So trust me when I say using the share and follow apps really makes a big difference. Benny and I set parameters about when I'm going to call him how long to wait, you know, that kind of stuff. But overall it helps us talk and worry about diabetes less and if he's at a sleep over or away. It gives me so much peace. of mind, it also helps. And I love this part if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours, and not just at one moment in time. And that really helps you figure out what steps to take the alerts and alarms will be set also help us from keeping the highest get too high, and help us jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow AP To learn more, go to Diabetes, Connections comm and click on the Dexcom logo.   I don't have anything profound to say about 2020 we have all been living this great awful together. longtime listeners have been going through it week by week with me here on the show. We've had some incredible conversations with us you listened some great zoom calls, some episodes, I put together with your thoughts as I interviewed listeners. And you know, it's really not as though the calendar is going to turn to January 1, and then everything's gonna be fine. You know, it's gonna be a long time. And maybe not ever before we go back to before, I'm not sure that life will ever be exactly the same as it was before COVID. But I do want to talk about just a few things that I'm thankful for a few things that have been a bright spot this year, when it comes to diabetes, control IQ has made a huge difference for Benny this year, I'm so thankful I'm really happy that the technology works as well as it does for him. And that we can afford it, we have access to it and we can afford the insulin that goes in it. I'm really thankful for my local group, we have tried to be there for newly diagnosed families. I mean, you know, we have a big Charlotte group, I've run a I run a Facebook group of seven to 800 families, it's 850 families at this point. And usually we'd be you know, we'd be hugging these new families would be crying and laughing and coffee shops and the kids would be meeting and homes and things like that and playgrounds. But we did our best on zoom. And in Hangouts. We have a lot of healthcare workers in this audience listening to this podcast, and boy, are we thankful for you, boy, do I salute you. I cannot believe how this all started off with everybody together applauding healthcare workers, I mean, literally right, making noise in some cities and banging pots and pans. And it ended with so many people not in this audience likely, but so many people openly define precautions and not taking things seriously, which puts more of you, you healthcare workers at risk. So stay safe, please know that we are thinking about you. And we do. Thank you. And to that end, I am very thankful and very excited that in our next bonus episode, we are going to be talking to healthcare providers with type 1 diabetes who have received the COVID vaccine. We're going to get their reactions to it and their messages about it. This is hokey, but it's true. I'm getting chills talking about this, because I've already done a couple of the interviews. And they're all talking about the hope that they're feeling. We do have a long way to go. But man, it's this this feeling that we haven't had for a long time. That episode is scheduled for New Year's Day, because I want to start 2021 off with some good news. I want to start it off, right? I'll post on social media if there's a change in scheduling or something happens. But right now, that's coming up on New Year's Day.   Quick housekeeping little bit before I let you go, look, we're going to be technology heavy in 2021. On this podcast, you have asked for that you have shown by your downloads your interest and your requests that you want to hear about the latest and greatest in technology. I'm not gonna stop doing the personal stories, but we are going to have an emphasis on pump companies CGM, what's coming down the pipeline, that sort of thing. Because of COVID delays, I think we're going to see so much technology news, this coming year, I mean, new releases, new partnerships, and more, because there was supposed to be stuff happening this year that got pushed off. And of course, there was stuff that was already scheduled for 21. So there's gonna be a lot to talk about. I'm very excited to bring you a lot of those conversations. It's really cool to talk to some of these companies and find out what's coming down the road. We do have returning sponsors, I want to mention that and thank them very, very much, my friends at Dexcom and Gvoke are going to be with us for the new year. And we are going to be joined by a new sponsor Dario I can't wait to let you know more about them. Some of you probably remember them there, the nifty meter that kind of goes right into your phone. But there is more to them than that, although that is pretty nifty. So we're gonna be talking with them and, and bringing you a lot of stories and information from Dario. But thanks to all of my sponsors cannot do this show. without their support. I guess I could run a Patreon or SQL to donate but I think that you will do enough and I want this show to be free. I don't want anyone to have to pay to listen to it or feel obligated to send me a donation there are much better places to donate. So huge thank you to the sponsors that help me do this and devote the time that's needed to do it right. And again Dexcom, Gvoke and Daario. Please visit their stuff on my website. Check out their posts when we share them and support them if you can. I do have some other new sponsorship opportunities by the way so if you're listening in have a business that appeal to this amazing audience, this incredibly engaged, educated and fabulous audience, just let me know. And finally, I am pivoting in 2021 to do something completely new for me. And it is not diabetes related. Oh my goodness, I'm not stopping the podcast. We are full steam ahead. But I am going to be teaching other people about podcasting. I am so excited about this. I've been doing this at conferences for a couple of years now. I've been doing a lot of one on one. And I finally decided to pull the trigger and do this as a business hub. Boy, all right. I won't be talking too much about that here. But if you follow me on social media, you will get all of the info. And if there are new ways to follow me you'll you'll find them all there. All right, thank you to my editor, John Bukenas from audio editing solutions. Thank you so much for listening. You know, you mean the world to me and that I think doing this show is really a privilege. I'm thrilled to be doing it for another year. I can't wait to jump in. I'm Stacey Simms and I will see you back here in 2021. Until then, be kind to yourself.   Benny  41:08 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged  

Stannis arrives at Winterfell. Tyrion runs Meereen as Daario and Jorah go after Daenerys. Jaime and Myrcella leave Dorne. Jon sends Sam and Gilly to Oldtown. Arya challenges the Many-Faced […]

Rob asks Morgan how to plan an Artist Date, a la Julia Cameron's The Artist's Way, for himself during Covid. Morgan asks Rob how to deal confronting a stinky dick. Then they take listener questions, starting with sixtywhine's question at 53:53 about why 69ing is considered uncool. At 43:58, Barbara Bites asks how to keep your teeth out of a blowjob. At 50:23, Daario asks what is the best method to communicate whether your partner is doing it right.

Tyrion tries to find a champion. Daenerys sleeps with Daario. The Hound becomes wounded. Jon’s advice is ignored at Castle Black. Brienne and Podrick receive a tip on Arya’s whereabouts.

The Davos’ Fingers podcast is trying something a little new starting with Episode 99.  The next several episodes will focus on “What if” questions.  Matt and Scad will then spend the episode untangling how George’s world would have been different if crucial moments had gone just a little bit differently.  So, get your headphones on and listen in as we ponder what would have happened if Rhaegar had defeated Robert Baratheon on the trident.  Would dragons have entered the world?  What would the Stark children’s lives look like?  Does Rhaegar make sure the three heads of the dragon are fulfilled with his two sons?  And maybe most importantly….who does Cersei marry?  Its a zany episode and we hope you enjoy! Make sure you check back in 3 weeks for our next What If episode.  It will be a doozy! Send us some Raven mail!  We love to hear the thoughts from the fandom, on everything from what type of underwear Oberyn might wear to weather Daario is worthy companion for...well anyone.  So find and like us on Facebook, or check out our tumblr at davosfingers.com.  We can also be found on twitter @davosfingers or through email at wearedavosfingers@gmail.com.  Lastly, if you feel like supporting the cast, check out our Patreon through patreon.com/davosfingers.   Selection Covered:  Everything.  We run free range all across the canon in this episode.  But there isn’t anything you could really read to prepare.  Just come with your general knowledge of ASOIAF and a willingness for fun.

We close out our time in Westeros with a discussion about minor characters, character arcs, thirst traps, spinoffs, and whether or not the books will ever be completed. This was a marathon discussion and it’s very apparent that one of us is three sheets to the wind as we finally reached the finish line. We dig into our favorite minor characters, which includes a salute to the queen of memes and queen of our hearts - Olenna Tyrell. Jocelyn remains completely on brand and could not choose a single character. As a result, we discuss that sexy Jaqen H'ghar music, characters who are tired of everyone’s ish, and give some well deserved love to the Reed children.Next, we get deep into our feelings about Theon Greyjoy and Jaime Lannister as we discuss our favorite character arcs from the series. We also get into our least favorite arcs. Jocelyn did not appreciate Littlefinger hustling backwards towards the end of his arc and Kristine wanted more development for Daenerys. We then move on to character deaths, which leads us to salute the Queen of Thornes once again for going out like a champ. We discuss the deaths we liked, the deaths we hated, and the ones that left us in shambles. If you are one with the thirst and the thirst is one with you, the segment on thirst traps will not disappoint! We also settle a very important debate about the best Daario and chat about our favorite failed fan theories. The episode closes out with what’s next for fans and we revisit our prior discussion on Pose in response to a lovely listener letter.Friendly reminder - we drink, we know things, and we use adult language.We will see you next Wine Wednesday for a discussion about Fleabag. Be sure to follow us on Twitter and Instagram at @MoreWinePod!Support the show (https://ko-fi.com/morewinepod)

It’s melancholia everywhere as no one feels at home in either Westeros or Essos. Theon and Lady Dustin visit the crypts in The Turncloak, Dany meets Quentyn, fucks Daario and marries Hizdahr in Dany 7 and Arya officially becomes an … Continue reading →

In this episode I take a look at Season 6, Episode 4 where Sansa and Jon are reunited, Yara and Theon are also reunited, Tyrion makes a deal with the masters, Jaime and Cersei devise a plan to rescue Margaery, Daario and Jorah go to rescue Daenerys and learn that she's entirely capable of rescuing herself. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/geekythronesgirl/support

Getting ever closer to HBO’s Game of Thrones season 8 premiere, Anthony and A.Ron are back to celebrated a related milestone; the imminent release of Volume 2 of their deep dive into the religions and cultures of Westeros, Gods of Thrones! This follow up to Volume one covers the Faceless Men, The Ironborn, the Dothraki, the Valyrians, and many more topics with tons of historical notes, cultural analogs, fan theories, footnotes, and fun. For this podcast we selected a few points of interest for discussion: How did the Targaryen penchant for incest drive them to conquest? What does a connection to a Tolkien horse god tell us about Daenerys and Daario’s relationship? We ponder these and other nerdy A Song of Ice and Fire topics before considering your feedback! If you’re interested in purchasing volume 1 of Gods of Thrones, it’s available now in print and digital version. Volume 2 is available for pre-order, and will be out for release April 9th! Leave Us A Review on Apple Podcasts Join the discussion:  Email  |  Forums  |  Facebook  |  Twitter Theme song: Game of Thrones (80’s TV Theme) by Highway Superstar Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode I take a look at the last episode of Season 6, where Stannis gets to Winterfell, Theon helps Sansa, Daario and Jorah set off to find Daenerys. Speaking of Daenerys she gets surrounded by some old friends, and the Night's Watch shows Jon how they feel about him. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/geekythronesgirl/support

This time on For A Few Chickens More, A Song of Schweiss and Johnson.... We discuss Tyrion's refusal to let Tywin win, The Mountain slaughtering randos, Rorge and Biter's deaths in the show/book, Jon urging the watch to prepare, Dany finally letting Daario into her bed, Oberyn decides to champion Tyrion in his trial by combat, and Littlefinger pushes Lysa out of the moon door. Enjoy the episode, and look forward to the next one!

In this episode I take a look at Season 4, Episode 7, where Daario gets a little closer to Daenerys, the Hound lets Arya help him. Brienne and Podrick get some unexpected information. Tyrion reminisces with Oberon and Littlefinger professes his true love. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/geekythronesgirl/support

We break down the aftermath of Tyrion's trial and discuss the murder of "bat-shit crazy" Lysa Arryn! We discuss how Daario is "Thirsty Spiderman" and climbs a damn Pyramid "The Office: Parkour" style (22:17), we have another extended conversation about Podrick's Payne's Dick (31:32), Bill enlightens us on what it sounds like when opening the Moon Door in the Vale (44:44) and we tackle our top choices for the "Win" and "Dick" of the week! (47:11).Our show can be found on Apple Podcasts and the Google Play Music Store, Spreaker, iHeartRadio, Spotify, Stitcher and even TuneIn, especially on Alexa-Enabled Devices! Ask Alexa to "Play the latest episode of the Old Sounds and the New Podcast on TuneIn" to enjoy our latest episode!Contact InformationEmail: OSATNPodcast@gmail.comFacebook: fb.com/OSATNPodcastTwitter: @OSATN_PodcastInstagram: @OSATN_PodcastContact the Cast on Twitter!Host: Daniel Quinn (@_DanielQuinn)Co-Host & Producer: Alex Loeung (@sung__moon)Co-Host: Bill Daily (@streakingsanta)

We break down the aftermath of Tyrion's trial and discuss the murder of "bat-shit crazy" Lysa Arryn! We discuss how Daario is "Thirsty Spiderman" and climbs a damn Pyramid "The Office: Parkour" style (22:17), we have another extended conversation about Podrick's Payne's Dick (31:32), Bill enlightens us on what it sounds like when opening the Moon Door in the Vale (44:44) and we tackle our top choices for the "Win" and "Dick" of the week! (47:11).Our show can be found on Apple Podcasts and the Google Play Music Store, Spreaker, iHeartRadio, Spotify, Stitcher and even TuneIn, especially on Alexa-Enabled Devices! Ask Alexa to "Play the latest episode of the Old Sounds and the New Podcast on TuneIn" to enjoy our latest episode!Contact InformationEmail: OSATNPodcast@gmail.comFacebook: fb.com/OSATNPodcastTwitter: @OSATN_PodcastInstagram: @OSATN_PodcastContact the Cast on Twitter!Host: Daniel Quinn (@_DanielQuinn)Co-Host & Producer: Alex Loeung (@sung__moon)Co-Host: Bill Daily (@streakingsanta)

This week on Game of Microphones, join Ser Duncan and Ser Patrick of Hindsight as they break down S3Ep08 "Second Sons" in our Game of Thrones Series Rewatch.  In an episode packed full of huge events, a Wolf Pup marries a Lion, Arya and the Hound begin their adventures, Gendry gets to experience one of the greatest fears of all men (fellatio by leech), and we have the introduction of Daario Naharis (v 1.0). No boombox outside Dany's window, just a bag full of the severed heads of her enemies! (Daario is pretty gangster!!) Arya and the Hound begin their adventures.  Kick back and relax for a mega 3+ hour episode!  Enjoy! Check out Ser Duncan on SIRENICIDE, the serial horror drama podcast, as Malak Husto!! Go to Sirenicide.com or download it wherever you get your podcasts!! Special Guest Johnny Stitches joins us himself on GoM in a couple episodes for our coverage of The Red Wedding! Please *support Game of Microphones for free* by trying Audible free for a month and getting a free audiobook at audibletrial.com/GoM  It helps a lot and you don't even have to spend a penny! Subscribe in iTunes: https://itunes.apple.com/us/podcast/game-of-microphones/id982748629?mt=2&ls=1 Episode download: http://traffic.libsyn.com/gameofmicrophones/GoM__70.m4a Email: ravens@gameofmicrophones.com Phone: (813) JOFFREY, that's (813) 563-3739 Facebook: facebook.com/gompodcast Twitter: @GoMPodcast Instagram: @GoMPodcast Tumblr: gameofmicrophones Produced by NoCTu Studios

You read it right, we're now House Podcastica! As always, our mission is to cover Game of Thrones in-depth, and to have fun doing it. This week it’s the beginning of wedding season as Kristin and guest Wendy go over Season 3 Episode 8, “Second Sons” for our series rewatch! We do deep with the title of the episode itself, the most awkward wedding in Westeros history, and we meet Daario (first edition)! Special thanks go to Brian Meloche of Golden Spiral Media’s The Walking Dead Talk Through and Star Trek Discovery for editing this episode, Amanda  Rogerson for helping us out with the latest up to date Game of Thrones news, and to all our listeners for their support and love over the last few weeks! dragons@podcastica.com facebook.com/housepodcastica  twitter.com/housepodcastica instagram.com/housepodcastica podcastica.com

It's the final pre-hiatus episode of The Mummer's Farce as Kate, Dan, and the rest of the world sit tight in anticipation of Season 8 of Game of Thrones. Here our hosts dig into final season gossip and lay out their predictions for the wars to come. The return of Daario? Cersei the ice queen? Kinvara joins with Young Griff to ride ice spiders against the zombie hordes? All are likely. There's also a look back at this very podcast and what the future of TMF could behold. Tune in for one of those bittersweet endings you've heard so much about!

Hachi machi is there a lot to talk about in the explosive conclusion to Game of Thrones season 6, where revenge is served like it's going out of style. Jon attends a very violent Woodstock festival, Daario gets dumped so he can he can run Meereen's special elections committee, and Cersei stays home from church. Elsewhere, Bran touches yet another tree, Arya bakes a pie, and pretty much every main character except for Brienne gets to do something. Maybe next year, Brienne!

Daario returns? • Daario and Salladhor? • Daario on the high seas • Daario and Salladhor provide transport for Dany/Jon/Melisande • Curve ball! • But what if they lose? --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app

The pieces are moving into place heading toward the season 3 finale with a couple episodes helmed by Michelle MacLaren. Kate and Dan talk about both the bear AND the maiden fair, as well as Daario preferences, bathtub agency, and how not to behave at a wedding reception.

So we're back to discuss the 5th episode of Season 7. Preston and I briefly mention my love of blondes, how Daario and Dany actually worked better as a couple than she and Jon and we also predict how Littlefinger might go down.

Young Griff and Daario have to come to terms with the fact that sometimes Daenerys isn’t interested as Ivan and Red continue their book club reading of the Boiled Leather chapter order combining George R.R. Martin’s A Feast for Crows and A Dance with Dragons. This week it’s Tyrion VI and Daenerys IV from A Dance with Dragons. Specific page numbers in various editions can be found here and here. Support Ivan & Red->patreon.com/boarsgoreswords Check out Ivan & Red’s politics podcast->Bunker Politics Follow us on twitter->@boarsgoreswords Find us on facebook->facebook.com/BoarsGoreSwords

Tronspelet – the great rewatch om när ”Game of thrones” gick över alla rimliga gränser. I den stora omtittningen av ”Game of thrones” har vi kommit till ”Breaker of chains” (s04e03). Littlefinger tar hand om Sansa efter mordet som skakar Kings landing, Tywin och Oberyn tuppfäktas på bordell och Daario tävlar i en Monty python-inspirerad kiss-duell. Vi analyserar haveriet runt den chockerande våldtäktsscenen och serieskaparnas märkliga bortförklaringar. The Hound har dåligt bordsskick och Daenarys kanaliserar Karl Marx. Proletärer i alla länder, förena er! See acast.com/privacy for privacy and opt-out information.

Bubba (@FittenTrim) and Catfish (@cjgman67) are back as Double P Podcast Network (http://facebook.com/doubleppodcasts) talk HBO's Game of Thrones and George R.R. Martin's A Song of Ice and Fire saga!First up: we read a Grand Maester Pycelle POV chapter from A Storm of Swords!Then, we reveal a written scene from Season 6 which never made air!We've got a Spinoff Special: Therapy with Dr. Yara Greyjoy!Finally, we do a Double B (Book Bitchin') session on Daario!Join the conversation on our Facebook page: http://facebook.com/doubleppodcasts

En Desembarco del Rey, Cersei confiesa sus pecados y es liberada tras hacer una penitencia. En el Norte, cerca de Invernalia, Ramsey Bolton y su ejército masacran al diminuto ejército de Stannis. Mientras tanto, allí en Invernalia, Theon trata de escapar junto con Sansa. En el Muro, la Guardia de la Noche guarda una sorpresa a Jon Nieve. En Meereen, Jorah y Daario emprenden una búsqueda para localizar a Daenerys, quien se encuentra en un valle donde es encontrada por un campamento Dothraki. En Dorne, Ellaria Arena declara la guerra a los Lannisters. En Braavos, Arya lleva a cabo el juego de las caras para una misión personal, lo que tendrá consecuencias.

The season ends with a bang as the High Sept of Baelor gets blown up wildfire style.  Cersei takes the Iron Throne after wiping out all her enemies.  Tommen goes emo and takes a plunge.  Dany dumps Daario, makes Tyrion Hand of the Queen, and departs with her fleet.  Arya shows off her faceless girl skills and wipes Walder Frey off her list.  Varys pops up to recruit Dorne and Highgarden to Dany's cause.  The North is moved by Lady Mormont to name Jon the King in the North.  Littlefinger sulks.  Bran has a vision confirming Jon's true parentage.

'Talk Sex w/ Podrick Payne' - your one-stop Luckswing destination for everything Game of Thrones. Season 6.10 "Winds of Winter" #TROY!!!!! (00:52) #CelloPianoMusic + #CreepyChildren, The Mountain and The Septa, Sweet Outfits, and terrorism in Kings Landing. Tommen, sigh T_T. The Citadel #OldTown, Life is irregular... #ChekhovsBook #WhiteRavens are expensive. Jon vs Sansa, Little Finger vs Jon? #WinterisComing Sansa > Jon. Daario is gone, eh. #TOWEROFJOY pt. 2 #R+#L=#J and #ChekhovsNurse Arya the smiling Murderer. Joey called it #FireandBlood, also Olenna > Sand Snakes #UltimateFanService and finally Margery played the game well. #RIPTyrells #Troy! #Troy! (51:04) #RogueMaesterNation Joey, Stephen, and Clare are huge nerds. Who will inherit HighGarden. More Shout outs to Margery. Dany lands in Oldtown? What will Euron do? Magic Horns? Where is Kinvara? THE MANDERLYS!!! Factions up North? Dawn? More of Dorne? Maesters start playing a bigger narrative role? (01:20:45) "The Light of the Seven" - aka that sweet ass score from the season finale - by Ramin Djawadi Notes: Happy Wednesday Everyone! #Troy #SeasonFinales T_T Another big thank you to Clare Sobetski for joining us this week. It's been an awesome season of Television, thank you so much to all our wonderful listeners. Remember you can always find more of our writing and other podcasts (if you aren't too sick of us) at luckswing.com Make sure to subscribe to us on I-Tunes!! And so the Tenth month wait beings...

Analizamos el décimo y último episodia de la sexta temporada de la serie de HBO "Juego de Tronos". Undécimo programa de nuestro podcast en el que desgranamos escena por escena el último capitulo de nuestra serie favorita. Hoy hablamos de lo que se rasuran en poniente (y en cambio no lo hacían en los 80s), de lo chunga que es la paya Cersei, de lo pagafantas que se ha vuelto Daario y de lo que nos mola la Khalessi (Nadia incluída) No os olvideis de dejarnos corazoncitos y comentarios :) y seguidnos en Twitter por @juegodetronadas y @somogoonies PROMETEMOS UN ESPECIAL RESUMEN DE LA SEXTA TEMPORADA!! EL NORTE RECUERDA

En Desembarco del Rey, Cersei recibe una estatua con el collar de su hija Myrcella y Jaime se dispone a ir por ella a Dorne, pidiendo la ayuda de Bronn. En el muro, Stannis le pide a Jon que se arrodille ante él y le jure lealtad; a cambio será reconocido como Jon Stark y se le otorgará Invernalia, sin embargo él rechaza la oferta, mientras tanto los hermanos de la Guardia de la Noche eligen al próximo Lord Comandante. En el Valle, Brienne y Podrick encuentran a Sansa con Petyr; tras la negación de Sansa por obtener la protección de Brienne, ella se dispone a seguir su caravana. En Braavos, Arya llega a la Casa de Negro y Blanco, pero se le niega la entrada y más tarde encuentra a Jaqen H'ghar. En Dorne, Ellaria le pide a Doran vengarse de la muerte de su hermano Oberyn torturando a Myrcella, pero él termina negándose a tal solicitud. Tyrion y Varys comienzan su viaje a Volantis. En Meereen, Daario y los Inmaculados encuentran un miembro de los Hijos de la Arpía, sin embargo, Mossador lo asesina antes de recibir su juicio, por tal motivo Daenerys ordena su ejecución pública, lo que genera un motín entre los amos y los esclavos liberados. Por la noche, Daenerys descubre que Drogon regresó a Meereen pero se marcha antes de que ella pueda tocarlo.

On this week's Thrones Cast, Dan, Nico and Nicki review Episode 4 of Game of Thrones Season 6 entitled "Book of the Stranger" where  Tyrion makes a deal while stalling for Daenerys return; Theon tries to make amends for the past; Jorah and Daario realize their next move won't be an easy one and Cersei discusses Margaery's future with Olenna. We also take time to read Listener Feedback from viewers of the show just like you!  TV Shows Reviewed on This Week's Thrones Cast:  Game of Thrones: S06E04 "Book of the Stranger"

Spoilers, profanity, Jaime x Brienne. Starks reunite and it feels so good. Tormund wants to invite a certain big, ugly wench for some Castle Black and chill. Jorah and Daario are feeling a little hangry, and it's too bad the High Sparrow never learned that a little hair of the dog will cure anything. Dany is heavy metal Jesus, Pycelle is a shuffling genius, and Larry and Carol are the same old/same old. Game of Thrones. A Song of Ice and Fire. Game of Thrones 6x04 "Book of the Stranger". Close The Door And Come Here - Episode 113

Reel World Thrones crew recaps episode four of Game of Thrones season six; discussing the Stark family reunion (0:45), Littlefinger the master manipulator (5:17), Tyrion negotiates with the slavemasters (9:23), Daario & Jorah buddy comedy (13:11), happenings in Kings Landing (15:48), Theon returns to the Iron Islands (22:00), Osha v Ramsay (23:24), Jon receives a letter at The Wall (25:14), Dany reiterates her status as Unburnt (31:27), ranking Game of Thrones seasons' fourth episodes (34:48), and scenes from next week (36:36). Opening Track: "Main Title (Game of Thrones Theme)" by Ramin Djawadi Closing Track: "Extreme Ways" by Moby

Warning: This episode contains spoilers for Game of Thrones episode, “Book of the Stranger.” The first three episodes of this season may have focused on ice, but tonight we saw the return ofFIRE in a big way. The Game of Thrones weekly podcast crew of Dana, Vanessa and Peter return to discuss every fiery detail of Season 6, Episode 4: “Book of the Stranger.” So far season 6 has been rather uplifting – relatively speaking – after the joyless black pit that was season 5, and there’s no better example of that then this week’s episode. In fact, season 6 has really upped the pace these last four episodes, as fans have been treated to an assortment of satisfying moments…which, judging by history, probably won’t last long. Daenerys had another showstopping moment this week; plus we finally get a Stark family reunion that many fans have been waiting for since Season 1. We see Sansa reunited with Jon; Theon rejoined with Yara; Margaery consoles Loras; Jorah and Daario find Dany, and even Cersei is (seemingly) joining forces with Lady Olenna. Joy! Tune in as we dissect every detail of this week’s episode, and be sure to send your comments, questions or fan theories to dana (at) stimulated boredom (dot) com, and we will respond to your email on the next show! Follow Dana on Twitter Find Vanessa at: Girls Gone Geek and on Twitter Follow Pete on Twitter You can listen to the full epsode via the embedded pliayer on this page, or simply subscribe for free on iTunes or through your favorite podcatcher app.

Spoilers Contained! 6-4: Game of Thrones "Book of the Stranger" Tyrion strikes a deal. Jorah and Daario undertake a difficult task. Jaime and Cersei try to improve their situation. Jon and Sansa reunite. -Game of Thrones Wiki Jessica and Dean's Deadpools for Season 6 Jessica -Jorah Mormont -Loras Tyrell -Margaery Tyrell -Lancel Lannister -Ellaria Sand Dean -Tommen Baratheon (but not really, he's a Lannister) -Melisandre -The High Sparrow -Ramsay Bolton -Theon Greyjoy A note on LIVE recordings This was recorded live on Mixlr. Make sure you follow the link below so you can be alerted to all live shows. We'd love for more of you to participate on Mixlr where you can join us in the chat room and be part of the show as it is happening! Please follow us on Mixlr for live recordings! Subscribe iTunes|Android|Sticher|TuneIn|RSS Contact Email Reddit Facebook Support Patreon|Pay Pay

Alex and Johnny freeeeeak out over the Season 6 premier of HBO's "Game of Thrones"! You know, the one where things happened and then Melisandre took off her robe. ---------------------------------- Time Codes:  00:00:00 Intro -- 00:05:25 The Wall -- 00:29:33 Winterfell -- 01:06:08 Kings Landing -- 01:27:50 Dorne -- 01:44:24 Mereen -- 01:48:44 Jorah and Daario -- 01:51:50 Dany -- 02:11:15 Arya -- 02:12:24 The Wall -- -------------------------------------- For the most up to date news and information regarding the podcast, like us on Facebook and follow us on Twitter @gotthronespcast! Contact us at gotthronespodcast@gmail.com and find ALL of our content at gotthrones.com!

"Extra! Extra! Read All About It! Mad Dick Head Kisses Queen! Not Long For This World!" Welcome to part 9 of Dance With Dragons or, featuring a cast of thousands, seemingly not long for this world. Northmen from the hills are fatalistically preparing for a chilly winter death, Stannis is getting bogged down in snow, Daario is pushing new boundaries of indiscretion and Ser Barristan continues to defy Dave's prediction of violent death - but how long can he survive?! It feels like everyone's livin on the edge! Get your feedback into us at sharkliveroilpodcast@gmail.com or find us on twitter @sharkliveroil

"Extra! Extra! Read All About It! Mad Dickhead Kisses Queen! Not Long For This World!" Welcome to part 9 of Dance With Dragons, featuring a cast of thousands, seemingly not long for this world. Northmen from the hills are fatalistically preparing for a chilly winter death, Stannis is getting bogged down in snow, Daario is pushing new boundaries of indiscretion and Ser Barristan continues to defy Dave's prediction of violent death - but how long can he survive?! It feels like everyone's livin on the edge! Get your feedback into us at sharkliveroilpodcast@gmail.com or find us on twitter @sharkliveroil

HE'S NOT DEAD!!!Join all six ladies of Fire and Lunch in our collective denial as we come to grips with the final scene of the Season Five finale. We also discuss our conflicted feelings about the rest of the episode and our hopes and fears for season six, which will probably include a Daario and Kevan Deathwatch segment. Sit back and enjoy some Pomegranate Pie in memory of the totally not dead Jon Snow.For maybe the last time, here there be book spoilers...sort of...but you are warned. #PieCast: Episode 38: S5E10 Mother's Mercy. Featuring Megan, Rachel, Jenny, Lauren, Katie and Jess. Running Time: 1 hour and 40 minutes...sorry...we had A LOT of feelingsAttention Listeners!Now that Season 5 is over, it's almost time for our 2nd Annual Wymans.  But who wants to just hear our opinons?  We'd love to hear your top choices for our categories, and we'll announce winners during the episode. Take a minute to complete our poll: http://bit.ly/1K1tHIp.  We've got some standard categories (e.g., Best Death Scene), but also some fun ones (e.g., Favorite Stalker!Jorah Moment).  Happy voting!  (We plan to close voting on July 5.)

Season 5 of Game of Thrones came to a close with the season finale, Mother's Mercy. The Cast Beyond the Wall is here to discuss what amounted to one of the most action-packed episodes of the entire series. Following the ultimate sacrifice of Shireen, Stannis prepared to attack Winterfell. In what had been prophecized as his defining moment, everything Stannis had killed for crumbled in mere moments. After being crushed by the Bolton army, Stannis fled into the woods where he would finally encounter the fan favorite Brienne of Tarth. We discuss the storyline that has been building to this moment for years. Despite the slow build up, it looks like we'll have to wait just a little bit longer to learn the fate of the fallen Baratheon. Our final trip to King's Landing this year took us to an unusual place as we finally felt sympathy for Cersei Baratheon as she "atoned" for her sins by making the demoralizing walk of shame to the Red Keep. Cersei is easily one of more villainess characters on the show, but watching the long walk was one of the most difficult scenes any of us had to sit through. We talk about her arc this season so far and whether or not her lowest moment could send her out to find redemption. Across the sea in Bravvos, Arya finally got some much-needed traction to what has been one of her more uneventful stories. After crossing the despised Meryn Trant off of her death list, we try to make sense of seemingly omniscient powers of the Faceless Men. We also head back to Mereen where Tyrion, Jorah, and Daario make plans to find Danerys back to the city.  Game of Thrones left us on an especially distressing note as Jon Snow seems to have met a cruel fate at the hands of his own men of the Night's Watch. It may seem like a pretty definitely period to what has been a notably bleak season, but we all tune in with our own thoughts and theories about the ultimate fate of the famed bastard of Winterfell.     

Spoilers Contained! Game of Thrones "Mother's Mercy" Stannis arrives at Winterfell. Tyrion runs Meereen as Daario and Jorah go after Daenerys. Jamie and Myrcella leave Dorne. Jon sends Sam and Gilly to Oldtown. Arya challenges the many faced god. Cersei confesses her sins.-IMDB Starring: Peter Dinklage, Nikolaj Coster-Waldau, Lena Headey, Emilia Clarke, Kit Harington, Aidan Gillen, Charles Dance, Natalie Dormer, Liam Cunningham, Stephen Dillane, Carice van Houten, Alfie Allen, John Bradley, Jack Gleeson, Isaac Hempstead-Wright, Rory McCann, Sophie Turner, Maisie Williams, Gwendoline Christie, Jerome Flynn, Conleth Hill, Iwan Rheon, Pedro Pascal, and Iain Glen Jessica and Dean's Discussion Notes And now Jessica's watch has endedStannis had to show upAbandoned and aloneA fitting and tragic endA complicated murdererClassic woman stuffBrienne's conflicting loyaltiesStaying strong to the Stannis characterNo body - no deathBrienne's infiltration skillsMiranda's swan diveTheon's choice to assist SansaNot enough time spent with Winterfell and SansaNewsflash: Jessica hates DorneWe were excited for uncle/dad JamieThe possible ramifications of Myrcella's deathTwo gold crowns down and one to goDeath by DornePrince Doran knows all about war, he's been in the holodeckHigh stakes murderEllaria the Ambassador of DorneThree Men and a DragonGrey Worm all tuckered out from his fight from 3 years agoWesteros AIDSThe urban hand waveIs there anything Tyrion can't do?Grey Worm the State Figurehead... apparentlyJorah offs Daario during their roadshowTyrion and Varys will run the pants off of MereenThe pull-away and Arrested DevelopmentPeter Dinklage will make Mereen more interestingDaenerys' relationship status with the Dothraki?You can never have a big enough armyArya goes rogue and crosses a name off her listArya Stark is Arya StarkThe best payoff all season was in BraavosFist pumping moments among the miseryNone of those boobs are hersSaving money on the nudity3 days to film and 7 days to watchIs Cersei changed?Qyburn bought himself longevity is Cersei gains powerYou reap what you sowWhat the heck is Mace Tyrell doing?Sam knows how to spot a sinking shipNot too injured for the bangingIf the Red Woman has lost her composure - things are badThoros of Myr, Beric Dondarrion, and the power of magicFor the watchThe sub-host cried her eyes outDean gets Shakespeare mad!If only Stannis was Olly's fatherFor the watch -- a mini-rant!Jon Snow will be backDeciphering Kit Harrington's interview quotes from variety.comNed and Jon's deaths feel similarKit Harrington coming into his own this seasonListener commentsDragon glass wrapped in baconRando homeless perv full-frontalEyebrow trimming celebrity makeoverThanks to all of our listeners for making this possible and for making it tons of fun ContactEmailSpeak Pipe Subscribe to LSG's "A Game of Thrones Podcast"iTunesStitcherRSS: http://gotonlsg.libsyn.com/rss(Cut and paste RSS address into podcasting app search function) Subscribe to LSG's "The Walking Dead Podcast"iTunesStitcherRSS: http://twdonlsg.libsyn.com/rss(Cut and paste RSS address into podcasting app search function) Subscribe to LSG's "The Science Fiction Film Podcast"iTunesStitcherRSS: http://sciencefictionfilmpodcast.libsyn.com/rss(Cut and paste RSS address into podcasting app search function) SupportPatreonWebsite

A few days of reflection and a few more rewatches have not been any kinder to our memories of episode 509, entitled “The Dance of Dragons”… Support Bald Move:  Amazon  |  Club Bald Move A few days of reflection and a few more rewatches have not been any kinder to our memories of episode 509, entitled “The Dance of Dragons”…  Arya’s subplot was uncharacteristically flat and obvious, Stannis is no longer the Mannis, things in Meereen were thrilling and epic but suffered from a bit of execution (too soon?) problems, and Dorne… well, it’s Dorne, which is an old Valyrian word for “crap”. Hopefully next week we’ll get a ray of sunshine as we finish of the series.  Perhaps somebody will order a Code Red on Ramsay and his A Few Good Men?  Or maybe Dany and Drogon will ride back in town, free the other two dragons, and Tyrion and a suddenly awesome Daario can take the skies together in a magical hour of fun and friendship!  Either that, or characters we know and love will be brutalized before our eyes as we take emotional kick after emotional kick straight to the emotional crotch.  Please sirs, can we have another?!  Check back Friday for our SpoiLORE cast, were A.Ron will be moderating a debate consisting of “Stannis; the Monster that Betrayed Us All” versus “Stannis; We Probably Should Have Seen This Coming All Along”. Leave Us A Review Join the discussion:  Email  |  Forums  |  Facebook  |  Twitter Theme song: Game of Thrones (80’s TV Theme) by Highway Superstar Learn more about your ad choices. Visit megaphone.fm/adchoices

What is dead may never die, but sometimes GarageBand eats your podcast about the gratuitous rape scene and you skip an episode.     This episode is negatory on the fat pink mast, but have some boob activated poison and thirsty Daario for your troubles.   Meanwhile, old people talk about how old they are […]

Clips of Johnny’s and my overall opinions of the episode, my brilliant Daario impersonation, Johnny grossing me the fuck out AGAIN, and possible soundtracks for Dorne. Oh, and, the Lord Commander’s fanny pack.

Until you have time for the whole podcast, here are some clips of Johnny and Alexandra's overall opinions of the episode, Alex's brilliant Daario impersonation, Johnny grossing Alex the fuck out AGAIN, and possible soundtracks for Dorne. Oh, and, the Lord Commander’s fanny pack. Enjoy!

Rod and Karen are joined by Kriss from MovieTrailerReviews.net and Justin to discuss #DemThrones, f'ing with black people, BallerAlert, pastor embezzles, whooping the kids, Sex Flags and sword ratchetness. Twitter: @rodimusprime @SayDatAgain @TBGWT @insanityreport @RhymeOverReason Email: theblackguywhotips@gmail.com Blog: www.theblackguywhotips.com Voice Mail: 704-557-0186 Guest Website: http://www.movietrailerreviews.net/ Sponsors: www.tweakedaudio.com Code: TBGWT

Spoilers Contained! Game of Thrones “The House of Black and White” Arya arrives in Braavos. Jamie takes on a secret mission. Ellaria Sand seeks revenge for Oberyn’s death. Stannis makes Jon a generous offer as the Night’s Watch elects a new Lord Commander. Daenerys is faced with a difficult decision.-IMDB Starring: Peter Dinklage, Nikolaj Coster-Waldau, Lena Headey, Emilia Clarke, Kit Harington, Aidan Gillen, Charles Dance, Natalie Dormer, Liam Cunningham, Stephen Dillane, Carice van Houten, Alfie Allen, John Bradley, Jack Gleeson, Isaac Hempstead-Wright, Rory McCann, Sophie Turner, Maisie Williams, Gwendoline Christie, Jerome Flynn, Conleth Hill, Iwan Rheon, Pedro Pascal, and Iain Glen Jessica and Dean’s Discussion Notes Braavos and the fearless AryaThe hustle and bustle of a new warless locationArya is denied at firstArya’s shrinking list…Qyburn the creepBringing back characters thought forgotten – 05:22Will Arya become a faceless man?Syrio Forel?Brienne and Podrick meet Littlefinger and Sansa – 12:10 Converging characters and converging storylinesThe characters are why we watchIs Brienne the last chivalrous character in Westeros? - 15:12Jessica takes us through the escalation of this confrontationLittlefinger’s Achilles HeelLittlefinger spots Lannister goldBrienne is too "Excalibur" – 19:30Penises and porridgeWhat’s Brienne’s next move?Cersei yells at Jamie some more - 24:50Cersei’s impossible expectations for JamieNegative cognitive filterSympathy for the Queen MotherCersei is running out of friendsEnter the sycophants – 31:05Uncle Kev ain’t hearing itKing Tommen, Sir Pounce, and pornBronn’s boredomBronn needs a nice womanThe Spider and the Imp – 39:36Tyrion’s boring and pointless life … for nowVarys’ long-con to ally himself with DaenerysOverall a lackluster check-in on Varys and TyrionDorne, Doran, and Ellaria – 44:20The law of trial by combatEllaria should learn from Oberyn’s deathAlexander SiddigTeam BronnCastle Black – 49:42Sam just surfing the medieval internetJon Stark – Lord of WinterfellThe North wants to fight for a Stark not StannisSilly morals and promisesDean considers Stannis’ second great offer this season – 56:23Pet crows and spidersMy kingdom for a cold, dark, wall…Janos Slynt and Meryn TrantSam roasts Janos SlyntA puddle of his own makingNed Stark has a very particular set of skills – 1:03:11Aemon votes Snow!Is Jon Snow untouchable?Jessica would be, “Shocked, shocked if Oberyn dies…”Mereen – 1:08:54Jessica can spell in PortugueseSlewed him…?Jody Foster’s President shooterWest Memphis Three?Bloody killer of HarpiesA fair trial for everyone except you… SIR!Daario the executioner?Targaryen loversA major decision for Daenerys – 1:18:56We hiss in your general direction!Drogon returns to help his distressed mammaListener comments – 01:23:11 Did Cersei set-up the snake incident to prompt Jamie into action?Characters that you care aboutFinal thoughts – 1:27:39 ContactEmailSpeak Pipe Subscribe to LSG’s “A Game of Thrones Podcast”iTunesStitcherRSS: http://gotonlsg.libsyn.com/rss(Cut and paste RSS address into podcasting app search function) Subscribe to LSG’s “The Walking Dead Podcast”iTunesStitcherRSS: http://twdonlsg.libsyn.com/rss(Cut and paste RSS address into podcasting app search function) Subscribe to LSG’s “The Science Fiction Film Podcast”iTunesStitcherRSS: http://sciencefictionfilmpodcast.libsyn.com/rss(Cut and paste RSS address into podcasting app search function) SupportPatreonWebsite

Spoilers, profanity, Jaime x Brienne. Maggy the Frog, more like Maggy the Fox. Tyrion is the Don Draper of Pentos. Mel and Jon ride the creepy elevator of lurrrve, while Brienne carefully polishes Jaime’s sword. We get some of Daario’s backstory and even more of his backside. Everything at the Wall is awesome… until it all goes up in flames. “The Wars to Come”Close the Door and Come Here - Episode 56

AFTERBUZZ TV -- The Game of Thrones edition, is a weekly "after show" for fans of HBO's Game of Thrones. In this show, host Dave Klein breaks down the episode in which Brienne follows a new lead on the road with Podrick; Tyrion finds a surprising ally; Jon's warnings about the Wall's weaknesses are ignored; Daenerys mulls giving Daario a longer leash. There to help Dave are co-hosts Kristen Snyder, Autumn Chiklis, and Sara Stretton. It's Game of Thrones "The Mountain And The Viper" podcast! Follow us on http://www.Twitter.com/AfterBuzzTV "Like" Us on http://www.Facebook.com/AfterBuzzTV For more of your post-game wrap up shows for your favorite TV shows, visit http://www.AfterBuzzTV.com --- Support this podcast: https://anchor.fm/gameofthrones09/support Learn more about your ad choices. Visit megaphone.fm/adchoices

AFTERBUZZ TV -- The Game of Thrones edition, is a weekly "after show" for fans of HBO's Game of Thrones. In this show, host Dave Klein breaks down the episode in which Brienne follows a new lead on the road with Podrick; Tyrion finds a surprising ally; Jon's warnings about the Wall's weaknesses are ignored; Daenerys mulls giving Daario a longer leash. There to help Dave are co-hosts Kristen Snyder, Autumn Chiklis, and Sara Stretton. It's Game of Thrones "The Mountain And The Viper" podcast! Follow us on http://www.Twitter.com/AfterBuzzTV "Like" Us on http://www.Facebook.com/AfterBuzzTV For more of your post-game wrap up shows for your favorite TV shows, visit http://www.AfterBuzzTV.com --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app · The Colin and Samir Podcast: The Colin and Samir Podcast hosted by LA - based friends and filmmakers Colin and Samir takes a look into what it’s like to make creativity your career. https://open.spotify.com/show/5QaSbbv2eD4SFrlFR6IyY7?si=Dj3roVoJTZmOime94xhjng Support this podcast: https://anchor.fm/gameofthrones09/support

On this GOT Post Episode Issues: Tyrion enlisting an unlikely ally. Daario entreating Dany to allow him to do what he does best. Jon’s warnings about the Wall’s vulnerability fall on deaf ears. Brienne follows a new lead on the road with Pod. Game Of Thrones Season 4 Episode 7 “Mockingbird” Recap Discussion and Review

AFTERBUZZ TV -- The Game of Thrones edition, is a weekly "after show" for fans of HBO's Game of Thrones. In this show, host Dave Klein breaks down the episode in which Brienne follows a new lead on the road with Podrick; Tyrion finds a surprising ally; Jon's warnings about the Wall's weaknesses are ignored; Daenerys mulls giving Daario a longer leash. There to help Dave are co-hosts Kristen Snyder, Autumn Chiklis, and Kyle Maddock. It's Game of Thrones "Mockingbird" podcast! Follow us on http://www.Twitter.com/AfterBuzzTV "Like" Us on http://www.Facebook.com/AfterBuzzTV For more of your post-game wrap up shows for your favorite TV shows, visit http://www.AfterBuzzTV.com --- Support this podcast: https://anchor.fm/gameofthrones09/support Learn more about your ad choices. Visit megaphone.fm/adchoices

AFTERBUZZ TV -- The Game of Thrones edition, is a weekly "after show" for fans of HBO's Game of Thrones. In this show, host Dave Klein breaks down the episode in which Brienne follows a new lead on the road with Podrick; Tyrion finds a surprising ally; Jon's warnings about the Wall's weaknesses are ignored; Daenerys mulls giving Daario a longer leash. There to help Dave are co-hosts Kristen Snyder, Autumn Chiklis, and Kyle Maddock. It's Game of Thrones "Mockingbird" podcast! Follow us on http://www.Twitter.com/AfterBuzzTV "Like" Us on http://www.Facebook.com/AfterBuzzTV For more of your post-game wrap up shows for your favorite TV shows, visit http://www.AfterBuzzTV.com --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app · The Colin and Samir Podcast: The Colin and Samir Podcast hosted by LA - based friends and filmmakers Colin and Samir takes a look into what it’s like to make creativity your career. https://open.spotify.com/show/5QaSbbv2eD4SFrlFR6IyY7?si=Dj3roVoJTZmOime94xhjng Support this podcast: https://anchor.fm/gameofthrones09/support

“You know, Daario 2.0, who’s obviously an upgrade…” “I was like, this council is not diverse, and then you know what I realised? I realised that Dany’s small council is still more diverse than the writing staff of Game of Thrones.” “If he can’t ride a horse, what was he doing in the brothel?” “Oh […]

Join A.Ron and Jim as we recap the action from the season four premier of HBO’s Game of Thrones, “Two Swords”.  We discuss Jaime’s cold reception by Tywin, Cersei and Joffrey, Tyrion caught in the sorriest love triangle of all time, the impressive introduction of Prince Oberyn, the less than impressive introduction of Daario 2.0, and Arya and the Hound kicking ass and crossing names off her list. All this, plus your quality feedback, and our “Spoilers beyond the Wall (of music)” section where I talk at length about another tinfoil theory out of Westeros! Hey!  Turns out you don’t need a temporary feed, our old iTunes feed is back! If you like what we’re doing, please consider helping us at by using our Amazon affiliate link whenever you shop online.  You can also subscribe to our network on Subbable, send some cash our way, and get cool subscriber rewards!  If you want to send us feedback, drop us a line at gameofthrones@baldmove.com.  You can also check in on the latest goings on of Bald Move at Facebook and on Twitter. Intro/outro music; “Arya’s Prayer” by Dominik Omega.  From the “Catch the Throne Mixtape” presented by HBO. Learn more about your ad choices. Visit megaphone.fm/adchoices

What a great way to open the season!  Find out Jim and A.Ron’s first impressions of Prince Oberyn, the new and improved(?) Daario, and the increasingly entertaining and satisfying Arya and the Hound roadshow.  Stay tuned, we’ll be back Tuesday with full coverage including a scene by scene breakdown along with lots of your feedback! If you like what we’re doing, please consider helping us at by using our Amazon affiliate link whenever you shop online.  You can also subscribe to our network on Subbable, send some cash our way, and get cool subscriber rewards!  If you want to send us feedback, drop us a line at gameofthrones@baldmove.com.  You can also check in on the latest goings on of Bald Move at Facebook and on Twitter. Intro/outro music; “Arya’s Prayer” by Dominik Omega.  From the “Catch the Throne Mixtape” presented by HBO. Learn more about your ad choices. Visit megaphone.fm/adchoices

Daario is hot, or something. Who cares. 

Daenerys wants to fuck Daario. Shocking.