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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: August, 2021
Aug 31, 2021

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.

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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

Aug 27, 2021

It's "In the News..." the only LIVE diabetes newscast!

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Top stories this week:

T2D screening guidelines to change

New Gvoke Kit approved

Gestational Diabetes cases up in younger women

Are magnets & radio waves coming to T1D care?

Update on #DiversityInDiabetes

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Links and sources in the transcript

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcript below:

 

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I’m going to link up my sources in the Facebook comments – where we are live on Wednesday August 25th 2021 – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, whenever you want.

XX

In the News is brought to you by Real Good Foods! Find them in your local grocery store, Target or Costco. Real Food You Feel Good About Eating.

XX

Top story this week.. the number of young people with type 2 nearly doubled in the United States from 2001 to 2017. These researchers found significant increases in all types of diabetes among both sexes and across racial and ethnic groups.

Type 1 diabetes remains more common among white youth. The highest rates of type 2 diabetes were seen in youth who are Black or Native American.

It's interesting that these CDC and NIH researchers say they don’t know the cause of the huge increase in type 2. They talk about rising obesity, but wonder what’s behind that? They also wonder if it’s because of increased screenings, environment or something else.

https://www.reuters.com/business/healthcare-pharmaceuticals/diabetes-surges-among-american-youth-study-shows-2021-08-24/

XX

Big change recommended in screening for adults with type 2. The U.S. Preventive Services Task Force now recommends screening for people who are overweight starting at age 35… five years earlier than recommended right now. That would include 40% of the US adult population. This task force recommends screenings that insurance companies must completely cover, without out of pocket costs to the insured, under the Affordable Care Act.

XX

FDA approval for Gvoke Kit to treat severe hypoglycemia. Xeris pharmaceuticals already provides Gvoke glucagon as an autoinjector and a prefilled syringe.. this Kit is for patients who prefer to draw up their own doses of glucagon using a vial and syringe. You don’t have to mix anything, it’s still a ready-to-use liquid glucagon.

Could be helpful to those who prefer mini-glucagon doses – which are NOT FDA approved – but are sometimes used during illness. Note that’s my comment, Xeris and the FDA is not talking about mini glucagon dosing at all.

 

https://www.fiercepharma.com/drug-delivery/xeris-a-rival-to-lilly-and-novo-gets-fda-nod-for-glucagon-kit

 

XX

Growing numbers of pregnant women are developing gestational diabetes. Between 2011 and 2019, rates of gestational diabetes in the United States jumped 30%, according to a large nationwide study of first-time mothers. The cause? Not clear. Every age group saw an increase – from 15 to 44 – so it’s not just moms getting older, which is happening. These researchers want to look at non -traditional risk factors like stress. This was a huge study – 13 million moms in the US.

https://www.upi.com/Health_News/2021/08/18/diabetes-pregnancy/7401629306285/

XX

In the – no thank you – department – researchers say they’ve got an implanted pump you’d refill just by swallowing a capsule. The catch? First, they have to implant the pump – which is described as the size of flip phone - along the abdominal wall, interfaced with the small intestine.

 

That refill capsule is magnetic, so the implant draws the capsule toward it. It then punches the capsule with a retractable needle and pumps the insulin into its reservoir. The needle must also punch through a thin layer of intestinal tissue to reach the capsule.

These Italian developers testing it all out in pigs – they say it controlled blood glucose successfully… for several hours.

https://spectrum.ieee.org/implantable-medical-devices

https://www.newscientist.com/article/2287225-diabetes-implant-is-restocked-by-swallowing-magnetic-insulin-capsules/

XX

Another maybe it’ll work item… Israeli startup Hagar has something called G-Wave technology that measures blood sugar levels using noninvasive radio waves.

The prototype puts the tech into a ceramic bracelet. Uses Bluetooth to transmit readings to an a mobile app with display and alert functions.

A proof-of-concept study found the company's radio frequency technology was able to continuously measure glucose levels with at least 90% accuracy, compared to the estimated 70% rate for traditional continuous glucose monitors. They claim that’s because it measures glucose in real time. Hagar now plans to launch clinical trials to pursue FDA approval

https://www.fiercebiotech.com/medtech/hagar-brews-up-11m-after-a-serendipitous-spill-led-to-creation-new-cgm-tech

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More to come, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

Real Good Foods. Where the mission is Be Real Good

They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients— I was in Target this week and I saw the new Entrée bowls, I bought the Lemon Chicken and the Lasagna. The Lemon chicken was great! It uses hearts of palm pasta instead of regular noodles which I thought sounded odd but really tasted good. They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com.

Back to the news…

XX

Big grant goes to Scripps Whittier Diabetes Institute to study the use of CGMs in hospitalized patients with type 2. This is a $3.1 million dollar grant from The National Institutes of Health. It’s to build on research going on now – during the COVID-19 pandemic.

CGM devices have been approved for outpatient use since 1999, but their use in the hospital setting remains limited to research efforts and the special conditions allowed during the pandemic.

https://timesofsandiego.com/tech/2021/08/10/scripps-whittier-diabetes-institute-gets-3-1m-for-glucose-device-study/--

XX

Congrats to Diversity in Diabetes for their newly minted 501c3 status.

The group was founded last summer and is dedicated to creating awareness and providing solutions to end health disparities and the lack of representation in the diabetes space. Their big event – People of Color Living with Diabetes Virtual Summit kicks off Sept 16 – more info and how to register in the show notes.

XX

Please join me wherever you get podcasts for our next episode -Tuesday –  we’re talking to the folks from MannKind, makers of Afrezza inhalable insulin. You had a lot of questions for them.. looking forward to that episode! The episode out right now is with Kyle Banks – a Broadway performer diagnosed with type 1 while acting in the Lion King.

That’s In the News for this week.. if you like it, please share it! If you’re watching this replay on YouTube please subscribe, if you’re listening via the audio podcast please follow. Whatever it’s called – I appreciate you being here. Thanks for joining me!

 

Aug 24, 2021

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

Aug 20, 2021
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Aug 17, 2021

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

Aug 13, 2021

It's "In the News.." the only LIVE diabetes newscast! Top stories this week: lots of interesting news in the latest Tandem Diabetes investor call including timeline and country updates. Researchers see whether a closed loop system can help people with type 2, new recommendations for gestational diabetes screening, camels milk for diabetes?! and the The Association of Diabetes Care & Education Specialists Annual Conference starts this week.

Join Stacey on Facebook every Wednesday at 4:30pm EDT to watch "In the News.." Live.
 
 

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription below:

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, whenever you want.

XX

In the News is brought to you by Real Good Foods! Excited to have them back as a sponsor! Real Food You Feel Good About Eating.

XX

Our top story this week.. couple of interesting nuggets in Tandem Diabetes’ recent investor call. The company has grown at least 40% in nearly every quarter since late 2017 when the first major update came through on the Tslim X2.  They’re getting ready to launch Control IQ in Germany and France.. and they’re moving ahead with studies of this hybrid closed loop system down to age 2.

Timing of NEW features is still a bit up in the air.. the company says they answered more FDA questions about bolus by phone and feel on track for approval by the end of the year - iOS and Android. T-sport submission will now likely happen in 2022. Like a lot of diabetes tech, COVID pushed these timelines out. One other little tidbit.. looks like there won’t be a big user manual with the mobile improvements - the training will be part of the app itself. Seems like common sense, but that’s a big change that apparently the FDA asked for.

 

 

https://seekingalpha.com/article/4445137-tandem-diabetes-cares-tndm-ceo-john-sheridan-on-q2-2021-results-earnings-call-transcript

XX

How about a closed loop for type 2? New research from the University of Cambridge shows it works just fine. This was interesting because the idea here was to look at people who require dialysis or a kidney transplant. This was a different system, a fully closed loop – no meal announcements needed. People using the artificial pancreas system spent more time in range and less time with hypos. This system has an adaptive algorithm and got better as it went, the average time in range on day one was 36% and by the third week it was 60%.

They didn’t list much about the technology here - but I’m going to follow up.  It’s not clear why these researchers aren’t also studying this completely closed loop for people with type 1. They are moving ahead with a new study in people with type 2 who do not need dialysis.

https://www.healtheuropa.eu/artificial-pancreas-trialled-in-type-2-diabetes-patients/110399/

XX

New recommendations for gestational diabetes - screening should continue into the second trimester says the U.S. Preventive Services Task Force. They say screening for gestational diabetes improves both  maternal and infant health, and treatment.

Gestational diabetes is estimated to occur in up to 9-percent of all pregnant women but might be up to three times as high depending on the diagnostic criteria used, say these researchers.

The task force recommends clinicians screen for gestational diabetes between 24 and 28 weeks', using a two-step approach of both a screening tool (oral glucose challenge test) and diagnostic (oral glucose tolerance test), just the tolerance test, or fasting plasma glucose tests.

 

https://www.medpagetoday.com/endocrinology/diabetes/93984

XX

A new way of looking at glucagon.. these researchers say they want to administer it as a preventive.. writing in the journal of the American Chemical Society these researchers say they have developed hydrogels that remain intact in the presence of glucose but slowly destabilize as levels drop, releasing glucagon into the system, safely raising blood sugar.

This is very early on and hasn’t yet been tested in people.. the early challenges so far have been keeping the hydrogel stable and keeping the glucagon from leaking out of the water like structure. But they say they’ve got it and are moving on to further studies.

https://www.news-medical.net/news/20210720/Novel-method-for-glucagon-delivery-to-help-individuals-living-with-Type-1-diabetes.aspx

 

XX

More to come, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

Real Good Foods. Where the mission is Be Real Good

They make nutritious foods - grain free, high in protein, never added sugar and from real ingredients - we are big fans of the pizza - Benny puts his in a frying pan, I prefer the air fryer. They keep adding to the menu line with breakfasts like waffles & breakfast sandwiches and great meals made with cauliflower & stuffed chicken. You can buy online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com.

Back to the news..

Is this the new okra or something that might actually work? Looking at camel’s milk to help lower blood glucose.

camel milk has many of the sought-after bioactive properties of so-called "superfoods." And is said to help with insulin resistance and glycemic control. There’s a clinical trial going on right now in Abu Dhabi looking to see if that’s folk lore or the real deal. One study they point to is in a camel breeding community in North India which found that those who regularly consumed camel milk had a 0% rate of diabetes. Quick warning here.. camel milk if you can get it is very expensive and you’re warned to avoid it in raw form..

 

 

https://www.medscape.com/viewarticle/956261

XX

The Association of Diabetes Care & Education Specialists Annual Conference starts this week. The theme is “Changing Forward,” was designed to highlight patient care that moves away from what organizers call an institutional, task-oriented approach. They want to push for more individualized care that reflects the diversity of people with diabetes. It’s a virtual conference and of course we’ll have an update next week from any sessions or reports that are of interest.

XX

That’s In the News for this week.. if you like it, please share it! Quick housekeeping note and a thank you.. I have something called the book to clinic program where I’m able to supply pediatric endocrinology offices and clinics with my book - The World’s Worst Diabetes Mom. I’m thrilled and flattered that educators and endos think this is of value to families. Big thanks to our newest book to clinic sponsor, Dia Be Tees - their mission is to raise Diabetes Awareness through modern, cute, humorous and fun tees! 10% of their profits go to JDRF. It’s very reasonable to become a book to clinic sponsor! if you’re interested please let me know. And if you’re a clinic who wants books, reach out and I’ll put you on the list.

Please join me wherever you get podcasts for our next episode -Tuesday -  you’ll hear from my son and get his thoughts on what it was like to spend one month overseas with a youth program not focused on type 1. He’s 16 and you bet I’m happy he’s home, but we both learned a lot.

Thanks and I’ll see you soon

Aug 10, 2021

Any level of exercise can be more challenging when you live with diabetes. When Eoin Costello was diagnosed with type 1 at age 19, he was worried that his love for fitness and sports would have to be put aside. Instead, he found a way to not only stay active but to coach other people with diabetes to do the same. Whatever level of fitness you're looking for, Eoin is all about having fun and making it work.

He's also the host of The Insuleoin Podcast. Stacey appears on a recent episode talking about her parenting experience.

Also this week, In Tell Me Something Good – type 1 diabetes and space force? Did we just see a big barrier – military service – come down? Link to the article here. 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription Below: 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system. This is Diabetes Connections with Stacey Simms. This week exercise with type one can be a challenge. You know there are a lot of variables Eoin Costello was determined to make it work when he was diagnosed and says the key is don't expect perfection.

 

Eoin Costello  0:41

When I start something new, I'm probably gonna see some highs and I'm probably gonna see some lows. And I think being aware of that, first of all is very important because you're not going to be as frustrated or discouraged when you do inevitably see these highs and lows

 

Stacey Simms  0:57

Eoin was diagnosed as a young adult. He has his own podcast and we talk about managing different kinds of workouts, treating lows at 3am. And lots more

in Tell me something good type 1 diabetes, and space force. Did we just see a big barrier US military service come down?

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

Welcome to another week of the show. Always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son was diagnosed with type one back in 2006, at the age of almost two, and he is now 16. My husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting. And that is how you get this podcast.

I am just back from podcast movement, which is a really big podcasting conference. I've gotten to it in years past, but I haven't been in a while it was really fun to catch up just like diabetes conferences, you know, you see all your friends and you do learn stuff. And I was there in a different sort of capacity, not just learning about my own show. But I'm working a little bit with a group called sheep podcasts, which is of course, podcasting for women. And I bring all this up just to say, it was really interesting to see the difference between travel at the beginning of July, which was the first time I really went to any kind of conference or in person gathering that wasn't, you know, immediate family. And in July, we were certainly very cautious. And friends for life, the organization there did a great job at being smart about COVID and doing everything they needed to do. But the difference this time was just the attitude and the feeling because of the Delta variant. You know, it was very interesting. Many more people were masking indoors than in July, many more people were expressing concerns about traveling back and forth. And I don't bring this up to say anything other than it was an interesting observation. You all know as you listen, you know, this is a very educated audience What's going on? I don't have to tell you anything.

If you follow me on social media, you might have seen that I was wearing a mask outdoors in downtown Nashville, I was kind of reluctant to go to downtown Nashville at all, but I'd never been there. And I wanted to see all the bridesmaid stuff myself. Because it is like the National Capital now in the US for bachelorette parties. And yes, it lives up to that hype. It was amazing. But I was wearing my mask outdoors. If you followed me on social you saw that. And I haven't done that before but it was crowded and a lot of young people and you know in the US the younger the less likely to be vaccinated. So we took more precautions than we know I say we then me than I normally would have

also was so much fun to meet some diabetes friends just as an odd coincidence in Nashville last Wednesday. As you listen children with diabetes, the group that puts on friends for life had a very cool event with mankind, the people behind Afrezza inhaled insulin, and they sponsored a fun time at a go kart track with Conor Daly. He is an IndyCar driver who lives with type one. And he was in town because Nashville had their very first Music City Grand Prix. I will link that up. It was a very cool, very different kind of race. But Connor was very cool himself. He was super engaging with the kids. I will link up some coverage. There was a new story come up some of the local news stations came out and made some videos which was really nice. I got to meet Rachel Mayo, who is a very cool lady who lives in Nashville. And you know, we're we've connected on social media for years. She lives with type one. She works with the JDRF chapter there. And Ernie Prado who's been on the show before he works at NASA. I saw him with friends for life. And he told me if I was going to Nashville, I had to look her up. So Rachel, it was so great to meet you. And maybe next time we will get in the go karts. I don't know. It was really fun though.

you know, one of the things I mentioned podcast movement, but one of the things that's really fun about going there is meeting other podcasters you know, we already have fabulous other shows in the diabetes community. There are lots of podcasts and more of them. keep popping up all All the time, I did sort of a swap with this week's guest, but we did it kind of backwards. I taped the interview you're about to hear with Eoin first. And then he interviewed me about a week later. But he has already aired the interview that he did with me. His turnaround time was quicker. So I'll put the link in the show notes to that Eoin Castillo's show is the Insuleoin podcast, it is great. Oh, and you can hear the name in the title there Eoin was diagnosed almost 10 years ago at the age of 19. And he was very active very much to sports at the time. And as you can imagine, very worried about whether he'd be able to continue. It's a bit hard to imagine now. But even 10 years ago, there wasn't the social media there was in the communication we have now in the diabetes community. I mean, it's taken off for sure. But when you think about it, 2011 was still at the very beginning. So there wasn't a lot of information out there for somebody who wants to run marathons or lift weights competitively, you know, that sort of thing. We had a great conversation about how Eoin you know, kind of found his way and he is now helping many, many other people. And he is Yes, he's from Ireland. I think his accent is much nicer than my my New York accent which occasionally comes out I know you hear it here and there.

But first Diabetes Connections is brought to you by Gvoke Hypopen. Our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice but a very low blood sugar can be frightening. Which is why I'm so glad there's a different option for emergency glucagon it is Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle. You pull off the red cap and push the yellow end on to bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with via chromosoma or insulinoma. Visit Gvoke glucagon comm slash risk.

 

Eoin Welcome to the show. It's great to talk to you today.

 

Eoin Costello  6:59

Thank you, Stacey. Thanks for having me on. I'm actually a longtime listener of the podcast. I was a pleasure. So I appreciate it.

 

Stacey Simms  7:05

Thank you so much. I was just about to say I really enjoy your podcast. It's kind of funny talking to a fellow podcaster. This will be nice.

 

Eoin Costello  7:14

Absolutely. At least we were both used to speaking on a mic.

 

Stacey Simms  7:17

Oh, we see now you set it up. Now we have to like up the game. We really have to be good today. I want to talk about your show and what led you there. But let's just start at your story's beginning. You were diagnosed with type one at at 19. What's going on in your life during that time?

 

Eoin Costello  7:35

Yeah, so I was kind of transitioning from high school, we just call it regular school in Ireland into college. So I had done a year of like a portfolio course I was actually going to art college for animation. It was around Christmas time. And I had noticed some differences in terms of how I was feeling. Obviously, I was very tired. I had lost about a stone and a half in the space of a month. I was really thirsty all the time. I just didn't have any energy. And I suppose because I was 19. And I was kind of into fitness and train and and keep myself healthy. I had this I had this naive attitude of I'm 19 I'm invincible. How could there be anything wrong with me, therefore, I'll just brush it off to the side. And it was around Christmas time and and in Ireland, we like to go to bars, we like to have a good time around that. Obviously, in France, I was having a few drinks. And if I was tired during the day, I would say it's only because I was out last night or if I was thirsty. It's because I've had a few drinks the previous night. And it wasn't until my parents were kind of quietly concerned. What they had mentioned that I should probably go dEoin to the GP get a blood test and just to see if everything's okay. And I reluctantly agreed because I was kind of saying, Look, I'm fine. I'm fine. I'm fine. There's nothing wrong with me. But I I gave in, because I just wanted to keep my parents happy.

 

Stacey Simms  8:59

Let me just interrupt you real quick. Just to translate over here. A stone is 14 pounds. So you lost 21 pounds.

 

Eoin Costello  9:06

Yeah, it flew off me. Right? Yeah. And in a very, very short space of time was about a month, a month and a half. But the thing about it was because you kind of see yourself every day, I didn't notice it as much. And it wasn't until I'd seen a friend who I hadn't seen and maybe six months or so I just bumped into her in the street. And she said to me, You look really different. And I said how would you mean and she goes I don't know you just look different. And she she kind of blurted it out and was embarrassed nearly but from saying it, but it was obviously because I had lost so much weight in such a short space of time. So basically I went down to the GP got a blood test. And a couple days later I got a phone call saying this is all I said it is blood test come back. You have type 1 diabetes, you need to go to the hospital right now. And I went in and my bloods were like six 40 640 so very high. And then that led me to my new life.

 

Stacey Simms  10:05

Was there any confusion about which type it was? Because sometimes, as a young adult, they don't go type one initially,

 

Eoin Costello  10:11

no, straightaway, they they had told me it was type one. But I had barely even heard the word diabetes before. I obviously knew that it was a condition that people lived with. But I had no idea of the complexities of it, or just the, the detail that you have to now live your life by. But no, there was no confusion. It was type one straightaway.

 

Stacey Simms  10:31

And while I'm sure your parents were supportive, but very worried, I heard your brothers gave you an interesting well, while you were in the hospital, is that true?

 

Eoin Costello  10:40

Yeah, it is true. So I was I was in hospital. I think I stayed there for about three nights while I was on an IV and obviously getting the crash course and diabetes management. And my family, in a good way have a dark sense of humor. We're nice people we like to think what around difficult times like that sometimes it can be nice to try and keep things light hearted. So my two brothers got a cough my brother and or my my dad. And we're obviously informed that Eoin has been diagnosed type 1 diabetes is in hospital. And on their way to the hospital. They picked up bottles of CO sweet jellies, these kinds of things to bring in as a joke. It kind of sounds weird. If you don't if you don't know. It came, it came from a good place.

 

Stacey Simms  11:30

That's funny. Yeah, I think sometimes dark humor has its place for sure if you know it's coming with love. That's really funny. Exactly, of course. So you're already very involved, as you said in fitness. I assume you played sports all growing up. What were you thinking at the time about what was to come next?

 

Eoin Costello  11:47

Yeah, there was a lot racing through my mind, obviously. But one of the big things that stood out to me and one of my main concerns was, can I continue to play sport, can I continue to be active, and for my whole life, I, I played a lot of different sports. But at the time, I was playing football, or I was playing soccer at a very high level. And I wanted to continue doing that. And because I didn't know anything about diabetes, I had almost automatically assumed that this would prevent me from being as active or playing sport. So it was obviously a big adjustment in terms of how to manage blood sugar around exercises, as we all know. But as time went on, I kind of quickly realized that look, you can of course, still play sport, you can be active, as long as you're still prioritizing your diabetes health. But the first while I was I was very concerned.

 

Stacey Simms  12:41

It's interesting, when you were diagnosed, you know, almost 10 years ago. Now, this is a time before a lot of social media. I mean, it's kind of just starting. But I guess what I'm asking is, you have a huge Instagram following, and other social media following and you post advice, and you talk very openly about how to do what you do with type 1 diabetes, I've got to assume that wasn't available for you. When you were diagnosed? How did you figure it out? How did you know what to do?

 

Eoin Costello  13:07

Very, very good question. It reminds me of when I kind of first got back to college. Because when I was in class, obviously, I had just been recently diagnosed. And as you say, Stacy, there was no social media, there wasn't really any, any sort of community based support groups that I could kind of connect with online and learn from other diabetics. And as we know, it can be very isolating to live with diabetes, because it's sometimes are consuming in your life. So at times, I was thinking I only person in the world left with this thing. And obviously I wasn't, but sometimes you can feel like that because it is so just on your mind all the time I was in college, I remember, some days, I was supposed to be doing work, but I might be behind the computer or laptop, just researching diabetes, because I became obsessed with in a really good way. Because I knew that. Okay, this is a very, very serious condition. It's something that is out of my control. Now I have it, there's nothing I could have done to bring it on. There's nothing I could have done to prevent us. But it's in my best interest now to know as much as possible. And for any diabetic out there, the more that we know, inevitably the easier things can be. I kind of just became obsessed with obsessed with trying to understand how different exercise would affect me how stress would affect me how lack of sleep would affect me, how hydration, different foods, these kinds of things. And it was it was almost like a guilty pleasure. I was just constantly constantly looking at open research and

 

Stacey Simms  14:42

we're going to talk about what works and I'd love to get some advice for everybody from you know, the very casual athlete to somebody who's really, really more involved in fitness. But I got to ask, did you have any mishaps in the beginning? Did you try anything that you said that's not going to work?

 

All right back to Eoin answering that question. But first bottom line, you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us a lot with that and that he understands the plan has to change. It's been he gets older, you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in rage percentage within three months reduction of a win see within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections for more proven results and for information about the plan.

Now back to Eoin answering my question about whether he's tried something in his workout or his diet routine that just didn't work.

 

Eoin Costello  15:59

Thankfully, I didn't have anything dramatic. Thankfully, I highlight. But yeah, of course, there's so much trial and error with diabetes and from throughout throughout the last 10 years, I have just had thousands of highs, maybe not 1000s of lows, hopefully keep them keep them less. But the more that I tried different things, the more that I tried to get out there the more exercise that I did on a test and different foods with different amount of amounts of insulin. There's just so much trial and error. But hopefully, I didn't have anything like decay or I wasn't kind of rushed into hospital board. Well, fingers crossed. Yeah, let's keep let's keep it. So it was more so just the highs and lows as they call them rather than anything too serious. Thankfully,

 

Stacey Simms  16:47

well, and I'll be I'll be clear on I was thinking more like you ate a banana before a workout. And it was not the right idea or wasn't so much like DK. Okay, I'm not too worried about, you know, that kind of mistake. I was just thinking about something smaller. But that's up to you.

 

Eoin Costello  17:03

Yeah, of course, there's times where I remember when I, I think it was been a few weeks after I was diagnosed and I was kind of getting back into the gym. But I was also kind of coming into a honeymoon phase quite quickly after I was diagnosed. And I was taught and I was learning to carb count for one unit of insulin for 10 grams carbohydrates. And I remember, I finished the workout in the gym, I went down to the changing room to get changed up shower, and I had a banana. I weighed out the banana. It totaled 50 grams of carbs. So I thought, Okay, perfect. I've waited out I've done everything I'm supposed to do. I took five units of insulin and ate a banana. But I hadn't fully realized the impact of a potential honeymoon phase. So I quite quickly plummeted. And I now have to get two liters orange juice in quite quickly. But I'm just mistakes like that. Just where you think you're on the right track with an insulin dose of carb count or something as diabetes does. It sometimes surprises you?

 

Stacey Simms  18:06

No doubt. I hate bananas. That's funny. That's why I gave that as an example. I'm not surprised that you had an incident with a banana. No, no, don't. Not one of my favorites. What kind of technology do you use? Do you use a CGM? Do you use an insulin pump?

 

Eoin Costello  18:24

So I've always used MDI, my mom, Nova rapid and Lantus. But only this year, I've got a Dexcom G6. And as you can imagine, that's completely opened up my eyes to a 24 hour period with my blood sugar rather than just that snapshot in time with a finger prick.

 

Stacey Simms  18:41

What motivated you What led you to start using a CGM,

 

Eoin Costello  18:45

it was more so they had become available in Ireland. So thankfully, in Ireland, we are with something called the long term illness scheme. So if you're diagnosed with Type 1 diabetes in Ireland, all of your supplies are covered, which is unbelievable. But only recently they had included the Dexcom G6, so it was actually only offered to me almost a year to today. It's been a game changer. It's just and particularly with exercise, it gives you so much more freedoms or much more confidence when you are to go to the gym or you are to go for a run or whatever it might be. It's so

 

Stacey Simms  19:19

interesting with exercise because my son who lives with type one has played lots of different sports. And it's always amazing to see those rises in blood sugar that comes not from food, but from exercise and the different types of exercise you have to learn what to leave alone with treat for. Did any of that take you by surprise? Did you see those? I call them adrenaline highs?

 

Eoin Costello  19:43

Absolutely. Yeah, I suppose what really surprises me and still to the day What surprised me so much is the drastic difference between and this is obviously from my own experience, the drastic difference between heavy weight training and something like a rant So to give you an example, if I was to actually, only this morning, I was in the gym, and I was doing relatively heavy squats. And when I work with heavier weights, my blood sugar skyrockets. So I've now gotten to the stage where more often than not, I will have to pre bolus for a heavy leg workout, because I'm anticipating that big spike. Whereas if I'm to go for a run, I'll know that after, say, 2030 minutes, my blood sugar's are inclined to trend lower. So ideally, I always try and go for a run with little to no insulin on board. That's why I like to run first thing in the morning. And then we're training in terms of weights, depending on what it is. I'm training. Like, if I'm doing heavy squats, I may need to pre bolus as if I'm having a meal, which is strange.

 

Stacey Simms  20:52

Yeah, yeah. But you have to figure all that out. I mean, it's it's incredible. And I always feel like just when we have one sport figured out, he decides to change. keep you guessing, right. You can't quit baseball. We figured it out. Now. He's done baseball, and basketball, football, a little bit of lacrosse, and now he's really enjoying wrestling. So I think wrestling is going to take us through high school, we are still figuring it out. Because it is you know, practice is super intense with lots of cardio and then sometimes wait on alternate days. And then the meats are just a lot of standing around and then these bursts of energy. So you know, it's

 

Eoin Costello  21:27

what would Benny's blood sugar? How would it react if he was saved on an intense wrestling session?

 

Stacey Simms  21:34

Well, the practices are to the point where we have the example, the very first wrestling practice he ever went to he ate 85 uncovered carbs during the two hours, he just liked having to stop No way. It was real. It was unreal. He was he's an active kid. But at the time, this is two and a half years ago. Now. He wasn't as fit as he is. Now to be quite honest with you, he had taken himself on as kind of a project and between eighth grade, and now he's about to be a junior. So two and a half, three years, he's really transformed his body. He's gotten a lot more fit. He's lost weight, he's muscled up. It's been it's been fun to watch, and kind of inspiring as the mom who just like walks the dog and works out a couple times a week. But he's really done well. So that first practice, though, was amazing. So we knew we had to make some changes. So we you know, we adjusted insulin. And as he exercised and became more sensitive, right, he responded better to the insulin, we were able to make a lot of adjustments. So if we knew it was a heavy cardio day, he would change his basal rates going in, in having control like you with Tandem has kind of changed that. But still, if it was a heavier weight day, he actually he kind of wait, no pun intended, he waits out the high, he doesn't like to dose for it too much because he will drop. And then during a meet, he just tried to kind of ride it. But he's 16 on. So sometimes that means ignoring it. To be quite honest with you, I can imagine and just getting through. So as his mom, I'm like, you know, if you just gave yourself a little bit you could He's like, it's fine. It's fine. It's fine. And it's fine. He's doing very well. He's very healthy. Our endocrinologist is pleased. So I can't really criticize him. But I but I'd like to

 

Eoin Costello  23:23

as mother's ward. Well, I'm sure look, he's he's in fantastic hands, obviously. But it's it's amazing to hear that he has stayed so active. And as you say he changed his body and seeing the difference with even the insulin requirements. Oh, yeah. Amazing.

 

Stacey Simms  23:37

Yeah, it's been great. So let me get I don't want to talk all let us let me get back to you. Sorry. When you talk to people about diabetes and fitness, and let's be honest, you are you know, fitness seems to be kind of your job. This is something that you are really passionate about. I'll share some videos and some photos if you haven't seen Eoin he's he? Are you a model? You're a fitness model in some ways, right? Terrible question. You're

 

Eoin Costello  24:03

gonna laugh at regression? Well, yeah, I'm with a model agency in Dublin, but it's not my my full time job.

 

Stacey Simms  24:09

Okay, so you can imagine how fit he is to have that as even a part time job. So let's start though by talking about people who are moderately active with diabetes, right? They may not they may not expect to be on the cover of, you know, a Fitness magazine, but they want to get in better shape. What kind of advice do you have for somebody who is worried about going low? Or is hearing us talk about these highs and isn't quite sure what to do? Where do you start?

 

Eoin Costello  24:35

Yeah, absolutely. Good question. And it's, it's something that I always touch on too. I make it quite clear that because I am so into fitness, I would never expect anybody to, you know, go to the gym five or six days a week and go out for runs multiple times a week. It's what I do with what I love. It's not for everybody else. But it's important that as a diabetic, we have some sort of activity in our life. Whether that be Going for a short walk a day, whether that be playing tennis, whether it be going for a swim, anything that you enjoy is the first piece of advice. It's important that if you want to exercise or if you're trying to introduce a new sort of regime or routine into your into your life, it's important that you enjoy it. Because if you do, you're a lot more inclined to continue to do and continue to see the benefits from it. So if somebody is concerned about the highs that I was speaking about, or the lows that I mentioned, what Ron's there is so much trial and error. And it's important that people always remind themselves of when I'm starting something new. And this can be with any aspect of your life. But particularly with diabetes, when I start something new, I'm probably gonna see some highs, and I'm probably gonna see some lows. And I think being aware of that, first of all, is very important, because you're not going to be as frustrated or discouraged when you do inevitably see these highs and lows. But if I was to offer somebody advice, who is trying to start walking or trying to start, say, even a light jog a couple times a week, the first thing is always be prepared for a high or low blood sugar, particularly low blood sugar, because the impacts of a low can obviously affect you quite quickly. So the first thing is always have your low treatment and start small, you don't need to aim to run a marathon quite quickly, you can think, Okay, I'm going to start this week, walk around the block, see how my blood sugar react, I might do to walk around the block, see how my blood sugar reacts to that. So instead of that kind of all or nothing mentality, you really need to ease your way into it. Because when you ease your way into things, you can steadily see any patterns or trends which approach, it might not be the best idea for somebody to say, Okay, I haven't gone to the gym ever before, but I want to start going, therefore, I'm gonna go to the gym six days a week, yeah, it's gonna be very, very, very difficult to understand how your body and how your blood sugar reacts to that. It could be I'm gonna go to the gym one day a week, and I'm gonna see what my blood sugar's like before, I'm gonna see what my blood sugar is like, during, and after. And if you're aware of the trends and patterns, like I said, with your blood sugar, it gives you more confidence over time. And the more confidence you have with your blood sugar, the easier it is to continue to do more.

 

Stacey Simms  27:27

And then for the people who want to do more, because we have quite a few people who listen to this show who are very much dedicated to fitness activity, athletics, you know, for those high achievers, any tips to kind of stay at that high level or get there,

 

Eoin Costello  27:43

I think a lot of that would depend on what that specific person's goal is. But if it is, say, to change your body composition, for example, and you really enjoy going to the gym, you like lifting weights, you can see your body changing over time, and you want to continue doing that, because it's it's what you love. Again, it's about enjoying it. But the priority will always be your blood. And I think no matter who you are what you do in terms of your exercise, whether it be intense, or just kind of casual each day, the priority is always blood sugar. Always, always always, for me anyway, that's how I feel about. And I think if you have a good understanding of how you're reacting to these certain things, then again, it gives you the confidence to push further and further and further and further, if that's what you want to do. So, to give another example from from my own experience, since the lockdown in Ireland, the gyms high close now, they're opened back up, thanks, thankfully. But when the gyms closed, I got big into running. And the first few rounds that I went on, it was again, a lot of trial and error, I would see a few lows, I would see my bloods dropping at a certain distance or a certain time. But the more I did it, the more my confidence grew. And then the more you do, you can kind of see yourself setting yourself goals. So I did a running challenge, which was 48 miles over 48 hours. So you'd you'd run for miles, every Yeah. So it was four miles, every four hours for 48 hours. And before I started running, I was thinking arc like could I could I do that, like with my butcher we get in the way is that realistic foot The more that you do, you can kind of see yourself getting closer and closer and closer and closer to doing these things. So if there is somebody who, as you say Stacey is a high achiever, or really enjoys their training, if you have that goal that you want to work towards, you can tweak your training or, or even tweak your diabetes management towards that, if that makes sense.

 

Stacey Simms  29:50

Yeah, I'm curious though you said you know the blood sugar is your top priority. What do you mean by that? Do you mean staying in range just knowing where it is? You know? When you say your blood sugar is the most important part of your workout, can you just talk a little bit about what you mean by that?

 

Eoin Costello  30:05

Yeah, of course. So I mean, not even specifically with training just in general, I always went out obsessing about it too much, I always like to prioritize my diabetes health. And for me, that is trying to keep my time and range in range as much as possible. Because I know that if I'm fluctuating high and low, and my time and range isn't where I would like it to be, that can almost immediately affect my quality of life for that for that day. Because I know that my clothes are up and down, not gonna feel the best and gonna feel as if I'm on the backfoot to my blood sugar kind of chasing them. So I always like to be as prepared as possible, so that I can almost look ahead those 2345 hours into a time where I'm working out to see, okay, I've eaten I've eaten this meal, I've taken this insulin. How can I expect that to react when I say I prioritize as I prioritize it, because I know that I won't be in the best form or I won't be able to train as much as I would like, if I'm having difficulties with my blood sugar.

 

Stacey Simms  31:12

What do you like to use to treat Lowe's Do you have a go to

 

Eoin Costello  31:16

when I'm disciplined with Lowe's, my go twos are these lift glucose drinks, or else dextrose tablets was easier said than done. When you when you're not having low blood sugar, but it's a whole different story, when you're waking up at 3am with a low blood sugar. And if I wake up at 3am, with a low blood sugar, the kitchen is just raided. And it's I always say I'm like a bear going into a picnic sometimes just can't be stopped.

 

Stacey Simms  31:44

Let's you know, it's nice to know you're human. I mean, that's that that takes a lot of discipline to just go for the tabs.

 

Eoin Costello  31:51

It depends on how low I am. If I'm dipping just underneath the time and range, it's easy enough just to stick to the glucose. But if I know I'm going lower, it's game over in terms of the treatment. And I know that then I'm going to inevitably see that kind of rebound. Hi, yeah,

 

Stacey Simms  32:09

do you have any foods that you really like to indulge in every once in a while

 

Eoin Costello  32:15

there is chips or crisps? We call them over here. And they're like, we thought they're beautiful things really crunchy. You're making me think about them. They're just these really crunchy salt and vinegar chips, as you call them. And they do these massive bags in Ireland. So I always have a few of them in the house. Just I probably eat them too often. Maybe that's why I train so much.

 

Stacey Simms  32:42

You know, I did want to ask you about your podcast. I'm curious. You know, I mean, I was in broadcasting. I know why I started my show, gosh, many moons ago. Why did you start your podcast? How did that come about?

 

Eoin Costello  32:55

I had never planned on us to be honest. And I think when I initially set up an Instagram page two, as you said earlier, Stacey to kind of help give people advice that I might be able to offer or what just experiences from my own life, it was almost like a snowball effect where the more that I shared, I felt as if the more I had to say. And then it almost came from a sort of selfish standpoint because I really wanted to interview other diabetics. And like throughout the past 10 ish years, I've always learned more from other diabetics than I have anybody else. So I felt that having a podcast gave me an opportunity to speak to as many diabetics as I could and to hear from their experiences. So it was to get other people on to share their experiences. And some of the guests that I've had on have been amazing. And I know you're going to be on shortly, which I can't wait for, for as well. I call this the insulin podcast redefining diabetes. I call it that because, well, for two reasons. Number one is I feel that diabetes is so globally well known. Everybody knows that it exists. But it's so widely unknown, and people don't truly understand the the intricacies that you're just a normal day entails. So I call that redefining diabetes, because I want to hopefully redefine what society see diabetes as and also, more importantly, what a diabetic sees that IBS is, it's really important for me that any diabetic out there realizes that look, it's not an ideal situation to be in as we know, it's a difficult condition to live with. What if we can learn to redefine that in our own head and kind of scratch on the surface to see what positives can we take from this, it doesn't have to just be a negative impact on our life. There can be positives from it, and I feel from sharing some of my own experiences and more, I suppose particularly more with the guests. It helps get that point Cross I've had people who've climbed Mount Everest ran across Canada, Chris Rutan, who was a motivational speaker who has obviously been on your podcast too. And I just think it can offer a lot of people value as your podcast those you've, you've been going for years now. And I know there's obviously 1000s of people that get such a massive benefit from this. So I'm hoping that they do too from my podcast.

 

Stacey Simms  35:23

I'm sure they do. It's a great show. But before I let you go, I'm curious, you know, you want to redefine diabetes. So if you look back at Oakland, 10 years ago, right, in the hospital, your brothers are bringing you soda and candy. And, you know, giving you a hard time, would you say that, at least to yourself, the definition of diabetes that you got that day, that in these 10 years? Since that you, you've redefined that for you?

 

Eoin Costello  35:51

I would like to think so. Yeah, I think if I was to put myself back in that hospital bed that was that 10 years ago, and to see how far I've come even just in terms of my own management and how I view my own diabetes? Yeah, I think I've redefined it for myself, which I'm proud of, I have to say,

 

Stacey Simms  36:09

yeah, you shouldn't be It's okay. That's great. Eointhank you so much for joining me, it was a pleasure to talk to you. I'm looking forward to talking to you for your show. I'm always it's a little weird to flip the microphone around and be interviewed. But I'll try to behave myself. Thanks. Great. Thanks so much for joining me today.

 

Eoin Costello  36:27

Thanks, Stacey. I can I just quickly say, I just want to thank anybody who's listening. I know that anyone who listens to the podcast is obviously looking for value. And I know that your time is an important asset. So I hope you've been able to get something from this episode. And Stacey, I'd like to thank you because this podcast for me personally has has brought me a lot of value. And it's offering people 1000s of people out there huge support and reassurance around their diabetes. So from a type one diabetic. Thank you, and I appreciate you.

 

Announcer  37:03

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  37:08

For more information about Eoin in my show notes, you can always find out everything at Diabetes, Connections comm if you're listening in the podcast player, it may be a little difficult to see everything. Some of them don't support the links or the transcript I put in you can always come on home to Diabetes connections.com I so appreciate talking to Eoin. It was so kind of him to say what he said there at the end. I never know what to say. But what a nice comment. And I really do appreciate that I do highly recommend his podcast, the insuleion podcast. It's a lot of fun. He's so engaging, as you heard, and it really is terrific. Please check it out.

Up next, we're gonna talk about space force. Did you hear about this guy with type one made it in? What does that mean for military service in the US? We'll talk about it. But first Diabetes Connections is brought to you by Dexcom. Dexcom has a diabetes management software called clarity. Do you use this because for a very long time, longer than I'd like to admit, I thought it was just something our endo could see. But it's really helpful. Now I have it on my phone, you can use it on both a desktop or as an app. And it's an easy way to keep track of the big picture. I find I use it a lot when we're adjusting things you know, which felt for a long time like it was non stop at age 16. Any kind of seems to be leveling out on growth and basil rates, at least for now. But clarity really helps us see longer term trends and helps us not you know over react, the overlay reports help put context his glucose levels and patterns. And when you share the reports with your care team, it's easy for them to get a great idea of what's going on and then they can better help. managing diabetes is not easy. But I feel like we have one of the very best CGM systems working for us find out more Diabetes connections.com and click on the Dexcom logo.

And an article from Stars and Stripes was making the rounds. This is a military publication. And you may have seen this really interesting. Tanner Johnson was due to graduate from the US Air Force Academy in Colorado. When he was diagnosed with type one. They allowed him to return but they referred him for counseling and they told him this is going to be the end of your military career. But he told the counselor, I want to stay in what if we could demonstrate that I could do it. He was able to get in front of the academy superintendent and talk to him. And apparently that personal meeting made a big difference because the 10 General Richard Clarke reportedly went to bat for Johnson. There's not a lot of detail in the article about the process here. But Johnson was allowed to graduate in 2021 and he was accepted into the space force.

If you are not familiar. This is I don't blame you because it's very, very, very new. Us space force is the sixth independent US military service branch. Of course it is tasked with missions and operations. In the space domain, it was signed into law at the end of 2019. And honestly, I know a lot of people think that this is something that former President Donald Trump just kind of made up and put into existence. But the idea has been around since the 50s. And it was seriously considered in the early 80s by Reagan. So I only say that to say, this is part of the US military. I saw a couple of Facebook comments about Tanner Johnson questioning whether this was really a military service assignment for somebody with type 1 diabetes, I believe it is, is it combat? Ready, right? Because Can you be deployed when you have type 1 diabetes is still the question. And that certainly doesn't seem to be something that is being planned for with space for so I obviously have a lot of questions, as I'm sure you all do, as well.

So I reached out to the reporter who wrote the story and said, you know, can you connect us I'd really like to talk to Tanner, and she reached back immediately. It was fabulous. I was so grateful for that. Thank you, Karen. And she said, I will ask him, I will reach out but he just started training with space force. And he will need authorization from leadership to talk to you she said quote, they tend to say no. So we'll see what happens. If you know, Tanner Johnson, or you could get me an interview with him. Please reach out. Let me know how to be connected. Because I have a lot of questions as I know you do, too. But what an inspirational story, what a big first step for the US military. We've talked to other people who have been diagnosed while they are already in the military, and they've been able to stay active. But I don't know anybody who was diagnosed during training, who was able to stay in.

So we'll keep following this one. But I'm putting this under Tell me something good because man, that's the last big barrier. We've got, you know, airline pilots in last couple of years can be type one now. Military service is the one that we still, you know, after that it'll be astronaut. So I think it's fantastic.  If you have a Tell me something good story, please reach out Stacey at Diabetes connections.com or post in our Facebook group. I ask there periodically. I love sharing good news.

Okay, before I let you go, just a reminder, join me on Wednesday, every Wednesday on Facebook Live. I do a very quick five to six minute newscast give you the headlines in diabetes of the last week all types of diabetes, not just type one. And then I turn that around. We make it a podcast episode on Fridays. But if you want to watch that Facebook Live, then it's on YouTube. And I you know I put it all out on social this week. If you're listening as this episode goes live on August 10, the Facebook Live is going to be earlier. I'm still actually making my schedule because Wednesday just is some kind of bananas day. And I have to do the newscast earlier. So watch the Facebook space. It'll probably be three o'clock in the afternoon 330 something like that. It's usually 430 and I am getting a great response. So I'm so glad you all seem to enjoy it. Thank you very much. If you have news tips, send them my way too. And that's it. Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.

 

Benny  43:11

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Aug 6, 2021
It's "In the News..." the only LIVE diabetes newscast! Top stories this week: FDA hints on 2021 D-tech timeline, the Freestyle Libre 2 app is approved, interchangeable insulin to cost less, an "astonishing" type 2 teen study and a big fall-off in use of metformin in people with type 2.
Join us on Facebook live every Wednesday at 4:30pm EDT
This week I was on the road, at the Podcast Movement convention. Sorry about the setting! Back in the home studio next week.

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Episode Transcription below:

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  I’m on the road – again! This time I’m at podcast movement a big convention going on in Nashville.. so apologies if the audio and video are a little bit off but I think we’re good enough. And As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more when you have the time.

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In the News is brought to you by Real Good Foods! Excited to have them back as a sponsor – we’re big fans. Real Food You Feel Good About Eating.

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Our top story this week… a brief comment about diabetes devices at the FDA might give a hint to some timelines we’re all watching. FDA Center for Devices and Radiological Health head Jeffrey Shuren says COVID-19 remains a source of uncertainty.

"Goal is to be back to normal as we roll into 2022," Shuren said. "But there are a lot of variables that could impact that… don't know if we'll get hit with another tsunami of submissions for full marketing authorization for a lot of the COVID products. Getting back on track, everything is moving for the diabetes submissions."

Products in front of the FDA expected by year’s end: Medtronic’s 780G and Zeus CGM, Insulet’s Omnipod 5, Tandem’s bolus by phone and it’s expected that Dexcom’s G7 will be submitted soon.

https://seekingalpha.com/news/3715640-fda-devices-head-says-progress-being-made-on-diabetes-devices-backlog

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The FDA did clear one diabetes product this past week.. Abott’s Freestyle Libre 2 iOS app. The Libre 2 hardware was approved last year.. this is the app for Apple phones.. it gives users optional real time high and low alarms – still have to scan to see the actual values. It updates every minute – only CGM that does – and it lets caregivers remotely monitor. Freestyle Libre 2 has a 14 day wear.. no exact date on when the App will be available or when it’ll be available for android users.

 

https://finance.yahoo.com/news/abbotts-freestyle-libre-2-ios-130000861.html

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Other side of the coin, Abbot will pay $160 million to resolve claims that two of its units submitted false claims to Medicare.

The Justice Department said free glucose monitors were provided to get patients to order more testing supplies, and the companies routinely waived copayments. They were also accused of charging Medicare for ineligible patients and for more than 200 patients who were actually dead.

https://www.reuters.com/business/healthcare-pharmaceuticals/us-says-abbott-units-pay-160-mln-resolve-alleged-false-medicare-claims-2021-08-02/

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Back to the FDA.. for the first time, they’re allowing a less expensive brand name insulin to be substituted for the original. Semglee – approved last year – is basically the same as Lantus but it’s a lot less expensive. Semglee is now is the first-ever to earn the “interchangeable” designation Trusted Source, meaning it’s fully approved to be substituted for Lantus at the pharmacy. No need to get permission from the doctor.

This is the second copycat of Lantus; the first was Eli Lilly’s Basaglar, launched in 2016.

There is some new branding and labeling needed here, so expect a relaunch of Semglee by the end of this year.

FYI the pens are a little different even if the insulin in them is the same. It’s always a good idea to know what your doctor is prescribing and what your pharmacist is giving you.. even if it costs less.

XX

Big new studies focusing on children and teens with type 2 diabetes.. showing how different the disease can be in younger people.

The studies, published July 29 in the New England Journal of Medicine, showed that within 15 years of a Type 2 diabetes diagnosis, 60% of participants had at least one diabetes-related complication, and nearly a third of participants had two or more.

These Texas researchers call it astonishing and say it appears type 2 in youth is much more aggressive than in older people.

These researchers say more treatment options are needed for younger people because lifestyle changes don’t seem to be enough. The study also showed a lot of families don’t have regular access to medication or health care providers. They say it was a diverse study representative of teens and kids in the US.

https://medicalxpress.com/news/2021-08-young-adults-complications-diabetes.html

 

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More to come, including new about people with diabetes who stop taking a very commonly prescribed medication..  but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

Real Good Foods! We’ve been fans for a long time – Benny especially likes their ice cream. Real Good Foods makes delicious food you’ll feel good about eating; high in protein, grain free and always made from real, nutrient dense ingredients. The labels are easy to read – because the ingredients aren’t chemicals and fillers. Whether it’s waffles or burrito bowls or stuffed chicken or the pizza that started it all.. I think you’ll really love Real Good Foods. Learn more with the link in the FB comments or as always at d-c dot com.

Back to the news…

 

XX

Interesting research using artificial intelligence to catch diabetes eye issues earlier – when they’re easier to treat.

Changes in the blood vessels in the retina cause diabetic retinopathy, the most common diabetic eye disease and a leading cause of blindness in US adults. There are several studies and institutes looking at the use of A-I here, but these folks at the Indiana University School of Optometry say they’re using information that is often ignored for diagnosis and it’s making a big difference.

The National Institutes of Health’s National Eye Institute funded the work.

https://www.futurity.org/biomarkers-diabetic-retinopathy-blindness-vision-2604812/

XX

Nearly half of adults prescribed metformin after a new diagnosis of type 2 have stopped taking it by 1 year.

The fall off is most dramatic during the first 30 days. These researchers say it didn’t matter how long the prescription was written for and most who discontinued still had A1C’s high enough to still need glucose lowering medication.

They say as physicians quote - A lot of times we're quick to prescribe metformin and forget about it...Physicians might write a script for 3 months and three refills and not see the patient again for a year...We may need to keep a closer eye on these folks and have more regular follow-up, and make sure they're getting early diabetes education."

https://www.medscape.com/viewarticle/955893

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That’s In the News for this week.. if you like it, please share it! And quick note this is our 400th episode. I’ve been busy with some behind the scenes stuff and it caught up to me! A huge thank you to all of you.. incredible support from this community. Six years and 400 episodes is an accomplishment that I’ve only reached because of you.

And join me wherever you get podcasts for our next episode -Tuesday –  I’m talking to Eoin Costello the host of his own diabetes podcast – about staying active or starting getting more fit with type 1. This week’s interview – the one that’s out right now – is a look at the features of Omnipod 5 – the newest hybrid closed loop system in front of the FDA.

Thanks and I’ll see you soon

 

 

Aug 3, 2021

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!

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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

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