It's In the News... the top diabetes stories of the past seven days! This week, what did lockdown mean for BG trends, Provention Bio keeps fighting for Teplizumab, the FTC shuts down diabetes schlockmeisters and if you're still using the Dexcom G5 - you need to hear this...
Join Stacey live on Facebook each Wednesday at 4:30pm EDT to watch live.
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Episode transcription and links below
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule.
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In the News is brought to you by Real Good Foods! Find their Entrée Bowls and all of their great products in your local grocery store, Target or Costco.
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Our top story.. What did COVID lockdown mean for blood sugar trends? A new study says when they had to stay at home, people with type 1 significantly improved while the opposite happened for those with type 2.
You should know these studies all come from European countries with pretty strict lockdowns and they’re an aggregate – a look at a bunch of previously conducted studies.
With type 1, time in range improved significantly in 83% of the studies looked at here.. with type 2, almost half of the studies showed a clear decrease in blood sugar control, with higher A1Cs.
So what happened? There’s a lot of speculation but these researchers suggest less exercise and more snacking and more stress is to blame for the type 2 numbers.. although in my opinion the same could be said for all people with diabetes. They also suppose that the lockdown gave parents more time to look after kids with type 1 and gave young adults a more predictable routine.
I hope another study is done on this in the US where, frankly – access to insulin & health care providers may have become more of an issue during the pandemic
https://www.news-medical.net/news/20210913/COVID-19-lockdown-linked-to-improved-glycemic-control-in-type-1-diabetes.aspx
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Bit of an update - Provention Bio moving forward to answer the FDA’s questions and hopefully resubmit. This is for Teplizumab the first drug shown to prevent type 1 diabetes for – so far- up to three years.. although the FDA turned it down in July.
Provention says they continue to collect data and are moving to set up what’s called a Formal Type A meeting to submit that new information.
The company’s CEO says they believe they’re making significant progress to address the observations cited by the FDA and continue to work with urgency.
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Bunch of schlock-meisters got called out last week by the US FDA and FTC – that’s the Federal Trade Commission. 10 companies got warning letters alleging they were selling illegal dietary supplements to cure or prevent diabetes. Regulators wrote the products cited in the warning letters are considered unapproved new drugs – they include things like turmeric, bitter melon, ginkgo biloba and more.. The report cites the increasing cost of insulin and other diabetes medications as a reason why people are turning to alternatives, even if they aren’t proven.. Please.. be careful out there.
Quick additional FTC note – they held a virtual open meeting today. Two people from the diabetes community spoke about rising insulin prices. If you’d like to learn more I’ll link up the information.
https://www.ftc.gov/news-events/press-releases/2021/09/ftc-announces-tentative-agenda-september-15-open-commission
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We don’t talk a lot about shots – multiple daily injections – but here’s some good news about the basics. New study shows rotating sites and using smaller needles really do help. You’ve likely heard of LY-po-hy-PER-tro-fee.. it’s when lumps of fat or scar tissue form under your skin. These Belgian researchers did a six month study where they provided smaller pen needles and did a lot of education, including an online platform where they taught proper injection techniques, including not re-using needles. They reduced what they called unexplained high blood glucose significantly and glucose variability decreased as well. A1Cs stayed about the same.
https://onlinelibrary.wiley.com/doi/10.1111/dme.14672
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No surprise but still disappointing – insurance is what’s dictating whether young children are more likely to use a CGM regularly. This was published in Diabetes Technology & Therapeutics.
Those on public or government insurance often face more obstacles.
This was a study of children ages 1-6 years, within two months of diagnosis.
82-percent used a CGM at least once during the study period.. but they divided everyone into 4 groups – always used CGM, stable use, inconsistent use or never used.
Families with private insurance were more likely to be in the always group or the stable group than those with public insurance. And..
The “always” group had an A1C that was 1.3% lower than the “never” group
https://www.healio.com/news/endocrinology/20210907/private-insurance-determines-cgm-use-by-young-children-with-type-1-diabetes
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More to come, including a Dexcom G5 update! But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.
Real Good Foods. Where the mission is Be Real Good
They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—the new Entrée bowls are great. They have a chicken burrito, a cauliflower mash and braised beef bowl.. the lemon chicken I’ve told you about and more! They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com.
Back to the news…
Heads up if you’re still – somehow – using the Dexcom G5. More than a year ago, Dexcom stopped selling the G5 and G4.. but – and thanks to the listeners who brought this to my attention – the G5 app is now sending out a notification.. On October 4th the Dexcom G5 app will no longer be available. As they’ve shared with us on the podcast many times, they’ve been transitioning everyone over to the G6 and will soon move on to the G7. No timeline on that btw I know you’re going to ask. But as far as we know, it hasn’t been submitted to the FDA and Dexcom has said it will go for European approval first.
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And finally don’t forget to send me your Dear Dr. Banting audio! What would you say to the man credited with the discovery of insulin? All the details and how to send it to me is in the show notes.
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Please join me wherever you get podcasts for our next episode - The episode out right now is all about the new Walmart Insulin.. will it save you money?
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
The term “Walmart Insulin” has always referred to cheap, older formulations. But now an agreement with Novo Nordisk means Walmart is selling own branded version of Novolog. It's the very same insulin, with a much lower cash price.
What does this mean for us as customers and for insulin pricing overall? Stacey speaks to Michael Burke, Walmart's Director of Brand Pharmacy Merchandising. They talk about who can get Relion Novolog, how much it costs, what your endo needs to know and how insurers are reacting.
www.getinsulin.org
LA Times article Stacey mentions
More info about Relion Insulin
Dear Dr. Banting (we need your voice!)
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode transcription below
Stacey Simms 0:00
Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premix auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
This week, the term Walmart insulin has always referred to cheap, older formulations until this summer, a new agreement with Novo Nordisk means Walmart is selling its own branded version of Novolog.
Michael Burke 0:38
real sense of pride for us at Walmart to hear the great feedback. Our pharmacists and pharmacy teams are very excited about the product and how they can help support patients.
Stacey Simms 0:50
That's Michael Burke, Director of brand pharmacy merchandising for Walmart. We'll talk about who couldn't get this, how much it costs. Why now and what's next.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed right before he turned two back in 2006. And my husband lives with type two diabetes. I don't have diabetes, but I spent my career in broadcasting and that is how you get the podcast
earlier this summer. As many of you probably remember, Walmart announced its new agreement with Novo Nordisk it is selling the same insulin that they make under the Walmart brand. So it's called ReliOn Novolog. And it's sold at Walmart and at Sam's clubs. This is not the older $25 so called Walmart insulin that includes older versions such as regular and NPH, which can be used safely if you know what you're doing very rarely used in pumps, and very rarely prescribed as a matter of routine. They're not the standard of care for modern day diabetes. But people do certainly use what many of you refer to as Walmart insulin, they still do use regular and NPH. But the vast majority of people who probably listen to this podcast and are regularly seeing an endocrinologist and have been diagnosed, let's say within the last 30 years are probably using novolog, humalog, And the the newer, you know, faster acting insulins. So because Walmart is selling novolog, we might have to change what we mean when we say Walmart, insulin.
And now that the dust has settled a bit, I thought it would be a good idea to find out how it's going and what it really means for people who use insulin. Unfortunately, I don't think it's changed the marketplace a lot. What it did prove, at least to me is that the retail price of insulin with or without insurance is as arbitrary, as most of us suspected. I mean, pardon my cynicism here. I do appreciate the folks from Walmart coming on to talk about this. And I appreciate that they're doing something I'm sure this new pricing will help some it is $73 though for a vial when the estimated cost of producing that vial is maybe four to $6. So it is still quite high. And that is the cash price. By the way with insurance as you'll hear it is likely a lot lower. So going in, please know and most of you already know this bottom line, ask your doctor, Ask your pharmacist, make sure you are getting the insulin that costs the least for you according to whatever plan you have.
There are so many hoops to jump through to ensure this if you don't have great insurance, you may want to go to get insulin.org that's a clearinghouse put on by beyond type one. And all it really does is bring all the coupon programs together. So it's one place where you can find out what you can get get insulin.org I will link that up in the show notes. We used it because as you'll hear in the interview, and I've shared this before, our current insurance does not cover the insulin that my son uses and wants to keep using and we needed to use coupons for that it did help us if you're struggling if you can't find these resources post in the Diabetes Connections Facebook group, you're more than welcome. We have a lot of great people who can help you figure this out. But you know, do what you need to do. as frustrating as it may be. Don't ration your insulin if you if you can possibly help it. I know that sounds ridiculous to even say that. But look, one in four people in this country do ration their insulin. So maybe there's something that we can do to kind of help you. As I said, jump through those hoops.
Alright, Michael Burke, Director of brand pharmacy merchandising in just a moment, but first Diabetes Connections is brought to you by Dario health and we first noticed Dario a couple of years ago at a conference, Benny thought being able to turn your smartphone into a meter was pretty amazing. And I'm excited to tell you that Dario offers even more now. The Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you With coaching when and how you need it and personalized reports based on your activity, find out more, go to my dario.com forward slash diabetes dash connections.
Michael, thanks for joining me a lot of information to get through and I appreciate you coming on. Thank you so much for having me. Let's just start with kind of an explanation, if you wouldn't mind, take us through what Walmart is doing here, what's the new version of insulin that Walmart is selling,
Michael Burke 5:28
we have recently launched analog insulins we can get into here in a second, the difference there, but it's an extension of our current line of insulin. So the insulin that we've had at Walmart for some time now is the human insulin, or the novolin products, our extension and new launch now is an analogue insulin, which are the newest version of fast acting insulin, and can help better regulate someone's blood glucose levels, very excited that we were able to get into this. It's been a large topic in the industry for a while on why we were just at human insulin as a private brand offering, and what more we could do so very excited that we got into the analog insulin, as it is the insulin to be used for a type one diabetic, and preferred in most cases and type twos.
Stacey Simms 6:19
Can you share a little bit about what happened here? Because this isn't something that Walmart could just do, right? This is a version of Novolog. I mean, this is an agreement with Novo Nordisk, can you kind of take us through what the process?
Michael Burke 6:30
Yeah, so we have had a long standing relationship with novo, they are the manufacturer of our human insulin, the Novolin ReliOn products that we've had on the market. And so with the changes of recent in the industry and a real focus, I'd say from across the board, from legislation to patient advocacy to patients, manufacturers, to pharmacies, to prescribers. There's been a large focus over the last two years on what more can be done in the space and so it allowed us an opportunity to work with novo and expand what we already had on the market is a private brand offering and bring a new private brand and new ReliOn offering in the Nova log in Nova log mix, both in a flex 10 and vile and offer a lower cost option for patients who had struggled with affordability to this point.
Stacey Simms 7:24
This is a branded insulin so you get ReliOn a brand novolog only at Walmart, am I Is that right? Is that how it works?
Michael Burke 7:32
Yes. So like everything healthcare, it's got to be confusing, right. So novolog is the branded name. That is the FDA filed and and trademarked products from Novo Nordisk. What we have done is partnered with Novo Nordisk to launch a ReliOn novolog and to ReliOn novolog MCs, same product manufactured by Novo Nordisk manufactured here actually in the US and comes off the same production lines is the same insulin, the difference being that it is branded with Walmart's private brand of ReliOn which enables us to bring that in house to self distribute to our stores help support our customers. So it offers us the opportunity to cut out some of the middlemen lower the cost, but still the same great product manufactured by Novo Nordisk still the same as their branded Nova log and Nova log mixes, just with a private brand twist from Walmart.
Stacey Simms 8:33
So this was announced in late June, as I remember, how has it been? Is it out now are people able to purchase it? What what's the roll up in like
Michael Burke 8:42
it is. So we started with the novolog vials and the Nova logs mix in our ReliOn brand, or sorry, the Nova log vials and the Nova log flex pins in our private brand of ReliOn. And then this last month, we were able to launch the mix in ReliOn flex pins and vials. So the regular novolog has been out a little bit longer. We're seeing really good traction, cut wonderful feedback from from patients, prescribers, various members of the industry, and has been really good reaction to this point, have a real sense of pride for us at Walmart to hear the great feedback. Our pharmacists and pharmacy teams are very excited about the product and how they can help support patients. We've heard lots of testimonials on where we've been able to save patients money and where patients were able to come to us and afford their insulin and not make different choices. And so it's for us been it's been wonderful since launch. Now. We're gonna keep that momentum going and make sure that we're reaching as many patients as we can and providing as much value and access as we possibly can in the insulin space.
Stacey Simms 9:50
It's some interesting questions for my listeners, if I could bring them to you. And the first one was, is there a limit to the amount that you can purchase per person per A month,
Michael Burke 10:00
there is not so these products, the newest launch the lion novolog and ReliOn Nova log MCs are prescription required. So as long as there's a valid prescription, there is no minimum or maximum that a patient can get dispensed at a time, a little bit different than our human insulin, which did have some limits on how much you could purchase at a time without a prescription, just due to some varying risks in an inability to keep in stock.
Stacey Simms 10:29
You've mentioned the mix a couple times what is the mix
Michael Burke 10:32
of it's a 7030 mix of analog insulin. So it's a fast and intermediate acting. And so for some patients, it is a better way to manage some of their peaks and valleys is to use an analog mixed insulin rather than just a single type of analog insulin and fast acting.
Stacey Simms 10:52
Is there is that again, pardon my ignorance is there isn't there a 7030 human insulin This is different or this is
Michael Burke 10:57
there is Yes, okay, insulin is a bit of a rabbit hole in the various types of insulin There are also mixes within them. So there are also long acting insulins. And there's some mixes in long acting or the parental insulin, their seeming insulin, which were the original insulins on the market that have mixes as well, and the analog insulin had mixes. And it's really just helped provide variety for patients and prescribers, that may not be seeing the right results with a single insulin, sometimes mix. Depending on what type of mix it is, is more beneficial and in lowering blood glucose, maintain the proper levels. Sometimes it's helpful in some patients without peaks and valleys. And I struggle with that
Stacey Simms 11:41
I just didn't realize it's my ignorance, I didn't realize that there was a 7030 analog. Alright, another question from the group. And another question, are they going to encourage providers to prescribe? Or is this solely an option for people with high deductible plans slash no insurance.
Michael Burke 11:57
So wherever there was a prescription, we will process whatever type of insurance where our goal is to have the lowest cost for a patient we possibly can. So may that be on our private brand insulin Navy on a brand or a different branded insulin? Every time a prescription comes to the pharmacy, we we do our best to make sure that we're going to give the lowest price. So our branded insulin continue to have some coverage today, our private brand does as well. So best opportunities is for patients to work with our pharmacy teams and make sure that they're getting the right Insulet at the lowest cost possible for them.
Stacey Simms 12:30
So I'm going to ask you a question you may not be able to answer and that's fine. But for clarification, so my son, our insurance currently covers novolog and doesn't like he doesn't prefer it. So if I were to get a prescription and go to Walmart, would my doctor have to write it for novolog? Would they have to write it for ReliOn novolog? Would I have to know could I possibly be saving more money if my doctor knew about ReliOn or does the pharmacist look at this at Walmart and say oh you want Nova log but it's gonna cost less if you use the ReliOn version
right back to Michael answering my question but first Diabetes Connections is brought to you by g Vogue hypo pen and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're gonna pass out there are lots of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar Jeeva hypo pen, it's the first auto injector to treat very low blood sugar tchibo kaipa pen is pre mixed and ready to go with no visible needle before Jeeva people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand, find out more go to Diabetes connections.com and click on the G book logo chivo shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash risk. Now back to Michael Burke answering my question about how much the pharmacist can do for you if you bring a regular old Nova log prescription to Walmart.
Michael Burke 14:10
Yes, for a no blog prescription or ReliOn Nova log private brand is interchangeable by the pharmacy or by the pharmacist. So a patient who has a current Nova log prescription or pharmacist can check to see if our private brands through insurance or other means would be a lower cost for that patient and can do that interchange themselves for those products so just know belong to our private brand over log. If a patient has a prescription for a another type of analog insulin that is not interchangeable with our private brand insulin. The pharmacist can verify insurance coverage for the patient and work with the prescriber on if it's appropriate to switch to private branded Nova log or to remain on the inside there. On today, so we can interchange with the novolog branded products themselves. But for other products, there would be a conversation between the pharmacist patients and prescriber to make sure they're getting the right insulin at the best cost for them.
Stacey Simms 15:15
Mike, you're going to have to forgive me as we move forward, we're going to start moving into more of a cynical part of the questions here, because as you've already alluded to problems is the rabbit hole. And we know I mentioned Nova log and human log, I mentioned that our insurance doesn't like human log to the point where and I've shared this story in the show, my son has done really well with it for many years. So when we changed insurance, I did not want to change insulins. So we took a it took a long time and some fighting, but I was able to use the coupons for human log, and we get human log for about $35 a month for all of the insulin that my son needs, which would be less, I believe, then if I were to use my insurance coverage, and get novolog or ReliOn at Walmart, I still feel like even though this will save some people some money, it just kind of feels like we're moving pieces around on the board. I guess my question would be for Walmart is how did you arrive at this price? Did you have to do you know? Did you have to set it a certain way to get the deal with novolog? This is gonna sound terrible. Do you throw darts at a board? I mean, who does for some people, it's going to be more expensive than what they're paying now. And I get some people will save money. But how did you come up with the price.
Michael Burke 16:29
So for us, we are one piece of the equation. As we've mentioned, healthcare is very complicated, especially the financial flows of healthcare. And so Walmart is one part of the financial equation as the dispensing pharmacy. We also have a distribution network and other assets that we utilize within Walmart. And so what we have done is taken all of our assets, tried to remove as many of the middlemen as possible. And put all of that back into the customer savings, customer pocket. We can't control all the levers there are in healthcare, but where we can we put it right back into the customers price, we truly mean it and Walmart and especially Walmart, health and wellness of the lives better and save money, right? Save money live betters Walmart from from the core, that's the only way that we could do so was was to take where we could remove some of the excess costs, and put it into that cash price, very complicated on the back end of who's making what decisions on formulary, and additional savings and eligibility for manufacturer discounts and coupons and on down the line. We can't control all of those. But what we can do is continue to take whatever we can out of that cost that inflation cost in the insulin and put it right back in to the cash price. And in that effort, hope to continue to drive down the overall cost of insulin to the marketplace.
Stacey Simms 18:06
Can you share? Is this an exclusive contract with Walmart? This was another question from one of my listeners, do you In other words, could other providers like Express Scripts? Or even Amazon You know, one of these folks that's getting into the pharmaceutical, you know, medication supply side? Could this be a first step toward other people doing something similar or is this exclusive,
Michael Burke 18:27
so the ReliOn private brand and exclusive for Walmart, that is our our trademark brand at Walmart for insulin and diabetic supplies products. So others couldn't utilize our ReliOn but we hope that this is part of other stepping up and and also looking to see how they can impact the space, how they can drive down costs. For us, it would be a great win if there was competition in the space. And we started to see insulin prices across the board come down because the competitive market only benefits the patients. And that's what we're looking to do. So we'd be happy if others were able to get in the game and figure out different ways to drive down costs for customers. Because at the end of the day, if there's an affordability issue, we won't be able to curb the growth of diabetes.
Stacey Simms 19:17
I'm curious, again, this this might be a ridiculous question. But with your answer in mind, do you have an agreement with novo in terms of how low you could get that cost? Because I mean, let's be honest, if you knock the cost down, it's set. What is it? 7288 per glass vial or 8588 for five flex pens, if you could knock that down to $35. I mean, you basically corner the market, no coupons or anything like that. Was that even discussed?
Michael Burke 19:44
Our focus is always on? How can we drive the lowest cost lowest price possible? We'll continue to focus on that. Like I said, there's only so many of the financial levers in healthcare that we own at Walmart and so we will continue to do our part To to take out everything we can from our end to make sure we're driving down prices and costs. But we only own so many of the levers. So we continue to look to novo and other partners to help us continue to drive those prices down
Stacey Simms 20:15
with the pricing that I just mentioned a moment ago. Are any coupons accepted for that? If people have novolog coupons? Are they good for ReliOn novolog? Or is that something completely separate?
Michael Burke 20:26
Yeah, that's completely separate. That's for qualified programs for their branded product. We don't have those Today, on our private brand product, what we continue to look at is, is how do we take the cost of those programs and put it right back into our pricing, because every day transparent, low prices, what we're looking for, as you mentioned earlier, the different insurance coverage, and copay assistance and discount cards and manufacturer discounts on down the line just makes healthcare so complicated for the average patient. And so our goal is to not continue to build those additional steps and needs and trapdoors and not put that pressure on our patients to need to go out and hunt and find those. But rather continue to put that right back into our cash price and make sure that we're offering as low as we can price on these insulins, in a transparent way, that that will continue to be our focus, just making this more complicated isn't going to help patients with affordability, access, continue to simplify a very complicated healthcare arena, especially insulin is to the benefit of all of our partners.
Stacey Simms 21:44
Just to be clear, the end, the prices that I mentioned, is that someone who doesn't have insurance, that's just a cash price.
Michael Burke 21:51
Yes, that is that is our cash price. And that is the starting price. So if a patient has insurance, or different type of coverage, that we will process and see their eligibility and what their coverage will do, and where that will bring down the price. We're seeing pretty good coverage so far since launch across the board. But you know that that continues to change. And as you said, there are different formularies and different pricing tiers out there. So that what we say is the highest you're going to pay for that box and vile and those prices, but we'll try to do everything we can to run insurance and check for every possible way to save money from those prices.
Stacey Simms 22:32
Here's another question from my listeners, are there any plans to offer the in pen cartridges, which is a different product, then no, then flex pens,
Michael Burke 22:41
we don't have that today, we continue to look in the space for for whatever we can can continue to offer and do but today, we do not have that as a as a product offering
Stacey Simms 22:51
any plans to do this with other insulins, you know, long acting or different brands or humalog or Tresiba. You know any other types of insulins that are out there,
Michael Burke 23:01
we continue to look for opportunities, kind of across the board, from our generic team to our specialty team to the branded team that I'm on, to figure out what are the best ways to save our customers money and make sure that they can be adherent to their medications. So I can say that we'll continue to look at opportunities. Diabetes is obviously a growing issue in the United States. It continues to create barriers for our customers, our patients, our families. So we'll continue to invest time and effort in the space and make sure we're doing everything we can to do our part to help increase access, decreased costs and support our patients in their journey and diabetes.
Stacey Simms 23:42
I appreciate you taking on my questions. I mean, I know you hear the frustration in my voice and my listeners comments and questions, because it just seems and I can't say this is Walmart's responsibility. But it just seems like we've been told for years and years that you know, the price is because of research and, you know, development and and then to just suddenly say, Well, you know what, we don't need to sell it for $300. We can sell it for 7288. It kind of seems absurd from where we all sit. And I know it's complicated. And I guess there's no question here, Mike, but I could just say to you, please, as you move forward, I know everybody needs to make money. I know that's how the system is. But if Walmart really wants to, you know, improve lives, improve access, please keep pushing to lower the prices, because it does make a difference. One in four Americans is rationing insulin right now. And while this helps, it also points out how frankly broken the insulin pricing system is. So I appreciate you doing what you're doing. And I appreciate you taking these questions on. And really just thanks for listening to me talk about that as well.
Michael Burke 24:44
Yeah, I appreciate your time. I appreciate you having me on. Like you said, we're here as Walmart to continue to do our part. We're invested in making our communities healthier, both from a customer standpoint and employee standpoint, community standpoint. So thanks for having me. I'm glad to talk to you I understand the frustration. I've lived in this world for a long time. So I've lived in the frustration, I feel it. I'm a pharmacist myself. And this has been a very complicated space that, quite frankly, we'd love to add some light to and make easier, make more affordable and continue to drive better outcomes for patients.
Stacey Simms 25:22
Mike, thank you so much.
Michael Burke 25:23
Appreciate you having me on and tell you we'll continue to do our part.
Announcer 25:33
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 25:38
More information at Diabetes connections.com. Of course, there's a transcript along with each episode now. And I will link up more information about the Walmart program. I'm also going to link up a column I thought was fantastic. From the la times by David Lazarus. He wrote all about this earlier in the summer, when it first came out, he lives with type one, he gets it. And it's an interesting look at the marketplace and what he thinks with Walmart entering what he thinks it shows about the price of insulin. He's a great writer, I'd love to have on the show sometime. But I'll link that up.
Alright. Diabetes Connections is brought to you by Dexcom. And you know, it is hard to remember what things were like before we started using Dexcom. I mean, I really haven't forgotten, but I guess what I mean, it is so different. Now, when Benny was a toddler, we were doing something like 10 finger sticks a day. Even when he got older, we still did at least six to eight every day more when he wasn't feeling well or something was off. But with each iteration of Dexcom. We've done fewer and fewer sticks. The latest generation the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about these little worn out fingertips makes me so glad that Dexcom has helped us come so far. It's an incredible tool, and Benny's fingertips are healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. learn more, go to Diabetes connections.com and click on the Dexcom logo.
Before I let you go, a couple of housekeeping things please send me your dear Dr. Banting audio if you have not heard me talk about this, I am collecting from you what you would say to Dr. Frederick Banting, the man credited with the discovery of insulin. Of course, there were many people helping him. But the Banting House Museum has an exhibit of print, dear Dr. Banting letters, I thought it'd be really fun to do an audio version. So let me know. I'm gonna link it up in the show notes. There's a whole blog post on Diabetes connections.com, about how to do it's very easy, just use your phone, but you got to get those three by the end of September.
And looking ahead, I'm doing a little bit of where are we going because we're starting to go places again, a little bit here. And there. I've got some virtual and some in person stuff coming up Delta permitting. So the virtual stuff I'm really excited next Tuesday. So if you're listening as this goes live, it was Tuesday, the 21st my JDRF local, but I think this is open to everybody nationally, and I'll put this in the Facebook group JDRF is starting something for older people with type one and I say older very judiciously because I believe I'm in this group with not with the diabetes, but in the older. You know, basically there's a lot of issues that people are facing as they hit, you know, middle age and older age. And it's not just Medicare. I mean, you know, but there's a lot of questions people with type one may have. And interestingly, I do a lot of research for this show my listenership very dedicated older folks. Again, I'm in this category now as I'm turning 50 in the month of October, but we're interested in issues pertaining to type one in their health as they get older. So I'm doing all of this to say next Tuesday, the 21st jdrf has a an online event that you can join in, I'm going to be doing a little bit of my in the news for this group. But it's going to be news that I have curated that is all to an older crowd. And I'm probably going to do it for 6065. And up I think that the the insurance, you know, cut off there makes perfect sense to try to find things that work for that group. But there is a Facebook group, I believe that they started as well. So more info on that.
And then later in October, we've got the shep podcasts conference out in Scottsdale, Arizona. That's the other group that I take part in quite a bit. I'm helping them out. It's women podcasters. Obviously, big group really excited to hang out with them. And we'll see in terms of you know how many in person events happen in the weeks and months to come? Hopefully they start picking up again, but lots of virtual stuff going on as well. So if you want me to come speak to your group online or in person, please let me know. I'm always excited to do that. And we gear it to you know, whoever I'm talking to parents or adults with type one, whatever you need.
Thank you, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. We've got in the news live on Facebook every Wednesday at 4:30pm. Eastern and then that becomes the in the news episode. You can listen to right here every Friday. So we'll see you back here soon. Until then. Be kind to yourself.
Benny 29:59
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Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule.
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In the News is brought to you by Real Good Foods! Find their Entrée Bowls and all of their great products in your local grocery store, Target or Costco.
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Our top story this week.. type 2 diabetes has been identified for a while now as one of the main risk factors for severe COVID-19. New research from the University of Michigan says the culprit appears to be an enzyme called SETDB2, which is part of the reason why wounds don’t heal well in some people with diabetes. Put very simply, as levels of this enzyme went down, inflammation during COVID went up.
There is already a protein – Interferon – that is known to increase levels of this enzyme.. These researchers hope their findings will help in clinical trials of interferon or other treatments. They also say it’s important to go through a patient’s medical history to better target treatment for COVID.
https://medicalxpress.com/news/2021-09-people-diabetes-severe-covid-.html
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Interesting study about young adults and what these researchers call Diabetes Distress. The study shows Distress – which they don’t really define, but what sounds like depression or burnout or other mental health struggles – is associated with higher A1Cs. Not too much of a surprise, but they also found it doesn’t matter if these young adults using insulin pumps or CGMs or just multiple daily injections.
This Yale study was done by looking at past surveys of more than 400 people aged 18-29 in NY.
They found that while users of insulin pumps and CGMs have overall lower A1Cs, the benefit of device use diminishes when high diabetes distress is present.
https://www.healio.com/news/endocrinology/20210908/diabetes-distress-associated-with-higher-hba1c-for-young-adults-regardless-of-device-use
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Certain racial and ethnic minorities develop type 2 diabetes at a younger age than white Americans. That means , current diabetes screening and prevention practices for them may be inadequate and inequitable
This Northwestern Medicine study says American adults are diagnosed with type 2 at an average age of 50, but for Black and Mexican American adults it’s 4 to 7 years earlier. And more than 25% of that group report a diagnosis before turning 40.
Recommended screening time is important not just for better health but because screenings are almost always only covered by insurance when the U.S. Preventive Services Task Force recommends them.
If that sounds familiar, that’s the group that recently announced new guidelines that lowered the recommended age from 40 to 35 to start screening adults who are overweight or obese for type 2 diabetes. Future research should consider whether even earlier screening is indicated among individuals with exposure to social risks, the study authors said.
https://medicalxpress.com/news/2021-09-black-mexican-american-adults-diabetes.html
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Very early on but promising results for what’s being called a bio- artificial pancreas. This is a tiny implantable device that holds insulin-secreting cells in a compartment protecting them from the body's autoimmune response.
The micro-encapsulation device has the potential to be an autonomous system that would not require constant refilling and replacement of insulin cartridges, according to these researchers.
The prototype has two separate chambers — one that collects nutrients from the device's surroundings, and one that houses the protected cells.
Lots of work before this one’s ready for clinical trials
https://interestingengineering.com/a-bioartificial-pancreas-could-substantially-enhance-type-1-diabetes-treatment
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More to come, including news about a T1D superhero movie, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.
Real Good Foods. Where the mission is Be Real Good
They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients— I was in Target this week and I saw the new Entrée bowls, I bought the Lemon Chicken and the Lasagna. The Lemon chicken was great! It uses hearts of palm pasta instead of regular noodles which I thought sounded odd but really tasted good. They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com.
Back to the news…
And a Big boost for diabetes camps. Lilly Diabetes will commit nearly $1 million over the next three years in a joint effort with the Helmsley Charitable Trust to the Type 1 Diabetes Camps Initiative.
The money is going specifically to non-profit diabetes camping organizations nationwide serving low-income youth living with T1D. and help diabetes camps adapt to the physical requirements of COVID-19 and better serve youth living with T1D via capital improvements.
https://www.prnewswire.com/news-releases/lilly-diabetes-joins-the-leona-m-and-harry-b-helmsley-charitable-trust-to-pledge-significant-funding-to-type-1-diabetes-camps-initiative-301368797.html
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A new movie with a superhero who lives with type 1 is coming to theaters next summer. Called “Gum-she: The Type 1 Protector,” it’s created by Jermaine Hargrove, diagnosed with type one 15 years ago as an adult.
The main character Justice Johnson has diabetes but it’s not the cause of her superpower. That comes from the bubble gum she’s always chewing and she’s able to shoot gum from her palms to help her save the world.
The American Diabetes Association is partnering on the film and promoting it.. one of the big themes is health equity..
There is a great article in diabetes mine all about this, I’ll link that up. In it, Hargrove says Bubble gum brings everyone together. Like music: it’s everywhere.”
I’m excited about this – but I have to say – if this had come out when my kids were little – I would be hiding all of the bubble gum. If you watch the teaser trailer – she is shooting bubble gum everywhere! Using it to create bridges and running around like spider man. So.. it looks really cute but knowing my kids? Again.. I’d have to hide the gum.
Watch for the trailer on world diabetes day – nov 14. The full film will be released next summer.
https://www.healthline.com/diabetesmine/a-new-diabetes-superhero-movie-you-wont-want-to-miss https://gumshe.com/
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Please join me wherever you get podcasts for our next episode - The episode out right now is with Ethan Orr – the Colorado high school swimmer removed from his meet because of his the medical tape over his CGM.
And send me your Dear Dr. Banting audio! What would you say to the man credited with the discovery of insulin? All the details and how to send it to me is in the show notes.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
A high school swimmer with diabetes is told he can’t compete at the state championships because of his CGM’s medical tape. It's a story that's been all over social media and national news outlets. What really happened here? We talk to Ethan Orr and his mother, Amanda Terrell-Orr.
They explain what happened that day, what they’d like to see change and what we can all do to protect our rights when it comes to diabetes.
Also this week! Send us your "Dear Dr. Banting" audio! Details here
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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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 help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system.
This is Diabetes Connections with Stacey Simms.
This week, you've likely seen the story of a high school swimmer with diabetes told he can't compete at the state championships because of the CGM, his medical team what really happened here, we talked to Ethan Orr and his mother.
Amanda Terrell-Orr 0:41
The whole point of the rule is to prevent a swimmer from having a competitive advantage. You would not have to be someone who understood type 1 diabetes to look at what even had on his arm and know that of course that would not cause the competitive advantage. Of course, it was just medical tape covering up a medical device.
Stacey Simms 1:00
Amanda Terrell Orr and 16 year old Ethan join me to explain in their own words, what happened that day, what they'd like to see change and what we can all do to protect our rights when it comes to diabetes.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. Always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son, Benny was diagnosed with type one right before he turned two. That was almost 15 years ago. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast.
Before we jump in. I need your help. I am trying something for November. I want to hear your dear Dr. Banting stories and letters. I posted this on social media. If you're in the Facebook group Diabetes Connections of the group or you get my emails, you will be seeing this this week and for the next couple of weeks. Because all the month of September. I'm asking you to record some audio. It's very simple. Just do it on your phone. As part of the dear Dr. Banting exhibit. We talked to the folks at Banting house the museum where Dr. Frederick Banting had his eureka moment where he came up with the idea that led to the discovery of insulin with other people. But Banting house has an exhibit called dear Dr. Banting. And I go much more in depth on this. It's a Diabetes connections.com. It's on my social media. I'm asking you, what would you say if you could thank Dr. Banting for yourself for your child? Right, just thank him. So all the specifics are in the show notes. Basically just try to keep it to a minute. I'd like to play these back during the month of November. I'm really looking forward to what you have to say. Don't worry about making it perfect. Just try not to have too much background noise use your phone's voice memo app doesn't have to be anything fancy and send it to me Stacy at Diabetes connections.com I cannot wait to hear what you have to say.
Alright if you haven't heard and boy this was all over social media last week and this week. Here's a quick synopsis of what has been reported. Amanda and Ethan will go much more in depth and and frankly set a few things straight that were reported a little bit inaccurately even has type 1 diabetes. He was diagnosed at age 10. He wears a Dexcom G6 he uses simpatch the brand of the tape is not important, but you should know that he wears the medical tape over the Dexcom as many people do, and that's pretty much what does that issue here. He also wears a Tandem t slim x two pump that he removes most of the time when he swims.
Ethan swam all season for his high school in Colorado Springs. No issue he had the CGM on for every meet. But at the state championship, as you'll hear, it became an issue. And I'll let me tell that story. But you should know going in is that this is not a lawsuit. The family is not suing for damages or anything like that they filed a complaint with the United States Department of Justice, Civil Rights Division. This is not about money. And you may have also heard that the CHS at the Colorado high school activities Association, which is receiving the complaint here. They say that Ethan did not have a signed medical authorization to have something like this. Well, he has a signed 504 plan. So does that overrule? Or could that be looked at is in place of what they're talking about in terms of medical authorization to wear tape in the pool because it applies to his diabetes and his diabetes medical management plan, USA swim, that governing body does allow medical tape. So there's a lot going on here and I think it's more in depth. And then you've seen in certainly a lot of these media reports, as well done as they are, you know, these people don't speak diabetes, they don't cover diabetes on a regular basis. So it's really excited that Amanda and Ethan agreed to come on and share their story where we could really kind of drill down and figure out what happened here and more importantly to me learn what we can all do to prepare our kids for sports and to kind of learn what we can all do to stand up for ourselves when it comes to diabetes. Right.
Okay, so quick housekeeping note, I'm nosy I like to talk to people so we set the table for a while here I talk about his diagnosis story how he adjusted to swimming you know all that kind of stuff. So if you're just here for the lawsuit stuff, we don't talk about the actual swim meet until about 12 minutes into the interview. So you could go ahead and skip ahead I'm not offended but just know that there's some getting to know you stuff that happens before we talk about the nitty gritty
Alright, Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's what most of us carry fast acting sugar and in the case of very low blood sugar, why do we carry emergency glucagon there's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke Logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.
Amanda and Ethan, thank you so much. We did this on short notice I really appreciate you coming on and sharing your story.
Amanda Terrell-Orr 6:27
You're welcome. Thank you for having us. Thank you.
Stacey Simms 6:31
And Ethan, you got up pretty early to do this. I am East Coast, your West Coast. So I appreciate that very much.
Ethan Orrr 6:35
It's all good.
Stacey Simms 6:39
Let's back up a little bit before we jump into what happened here and the lawsuit and everything. Amanda, let me start with you. Tell me your diagnosis story.
Amanda Terrell-Orr 6:48
Sure. So Ethan was 10 when he was diagnosed, and our diagnosis story, I think is fairly typical of other people we had noticed, Ethan's teachers had noticed that we had noticed that he was going to the bathroom way more than usual. So I took him to his pediatrician and expressed some concern about that didn't really know what might be happening. They did a test of his urine. And it didn't show any kinds of problems with sugar or ketones or anything like that. So we just sort of stopped at that point. And then you know, weeks go by, and this is still happening. We went on a small vacation and even drank all the bottled water that we had, and was still going to the bathroom all the time. And then the day before Easter that year even had been kind of wrestling with a friend. And he started to be short of breath. And he also felt like really like something was wrong. So the morning of Easter, we wake up and I look in his mouth, and I see white spots in his mouth. And I say to him, it's time we need to go to urgent care. So in the back of my mind this whole time has been some education that I saw on a friend's Facebook post about type 1 diabetes, her son has type one. And she always posts educational information. And so in the back of my mind, I was thinking, I wonder if the test whatever they did at the pediatrician was wrong. So we go to urgent care, they test them for strep throat, of course. And then I mentioned to the doctor that I'm concerned because of these other symptoms. The doctor, of course, has someone test his blood sugar. And luckily for him, it wasn't extremely high. He wasn't NDK. But urgent care at that time, send us directly to the hospital. So Ethan really stayed a day in the hospital. And the next morning, we were able to connect with the Barbara Davis center part of Children's Hospital in Colorado. It's an excellent place for treatment of kids with type one. So we were able to go there and immediately start connecting with resources and other families and of course, like, like everyone after diagnosis, drinking from the firehose to try to figure out how are we going to live in this new life?
Stacey Simms 9:10
Even What do you remember that time?
Ethan Orrr 9:12
I remember during the day before with all the symptoms that I would wake up in the middle of the night like to use the restroom. I didn't know what diabetes was immediately in the car. So mom was tearing up a little bit on our way to the hospital. And she when I asked asked, like, what is diabetes? She's like, well, you're gonna be getting quite a few shots today. Because like home, right? No, I like I thought she was kidding. At first cuz I've never heard of some like that. The beginning is I was just in shock a little bit. But then like, I slowly edged in or wet or things will be good. Nothing's gonna change too much.
Stacey Simms 9:53
I don't want to fast forward too much as we're getting to, you know, the news story here, but you're 16 now, so Were those six years. Obviously you play sports, did things kind of go to a better place? Do you feel like you guys managed it pretty well?
Ethan Orrr 10:08
Right? When I got diabetes, I was still competing, swimming wise, and I was trying to swim for the Colorado torpedoes in Manitou. At the time I, I had my CGM, but it didn't work in the water was a different type of CGM. So my phone couldn't connect in I was in a spot where I was close to my honeymoon period. And so we had a we are way too many troubles, trying to like dangerous troubles trying to be able to swim that year. So I ended up just pulling out, you know, we made a family decision is too dangerous, because I could feel my blood, like when I went low or high or anything like that isn't that low? This year, at the beginning of the season, we are a little bit of a problem. Not a little, there's a big problem at the beginning of the season, because my body wasn't ready and adjusted for stuff like that. So I had a lot of very, very bad lows during some practice for like about a month. And then it finally picked up and I was completely fine after that. And I was able to swim very well with the rest of it without blood sugar issues.
Stacey Simms 11:16
Amanda, let me switch over to you. Tell me about that experience. Because I know with my son, every seat Well, first of all, he changes sports every couple of years, which is bananas, because we figure it out. And then he moves on. So what was swimming? Like? Yeah, you hear you,
Amanda Terrell-Orr 11:29
I hear you. Yes, we have that experience as well. It sounds like our kids are similar that way Ethan likes to jump around sports. So he had been even been competitive swimming for not an insignificant amount of time, I would say when he was diagnosed, and it was just in that honeymoon period and learning everything. And being just terrified of every significant low. You know, at the beginning, those things seem really insurmountable. Because even had a couple of really scary lows, it was also kind of affecting his confidence to stay in swimming. So sadly, something that he really loves. What we said is we put it on pause. We didn't think it would be on pause this long. But it was really Ethan's choice. And so we were really happy this season, when he chose swimming again. And then he started swimming, and everything that we thought we knew about management of his diabetes changed in some ways. And in Ethan's case, he was he's very active, he's very fit. But his body was not used to the kinds of energy that need to be expended to swim in particular. So we tried all the things, all the tricks, all the tips that everybody gave us. And he was still having really significant lows, having to be assisted out of the pool sometimes. But to his credit, and one of the things I'm so proud of him for is that he swam right through that he had to sit out of practice a lot because of low blood sugars. But he still kept going every day. And he believed us when we said your team is going to help you and by team I meant his endocrinology team, and also athletes with type 1 diabetes. So we threw out questions out there into the social media world and got great advice from other people, athletes with type one. And we combine that with the guidance from our endocrinologist and Ethan's body also adjusted to the swimming. And so at the end of all of that he was at the end of the season, he was really doing pretty well in terms of being able to swim safely. So we were very proud of how he came through this season. You know, to be honest, as a person without type 1 diabetes, and an adult. I don't think I would have done that. It was very, very hard, but he stuck it through and was fortunate enough to be able to go to the state championships.
Stacey Simms 14:01
He said I'm curious what worked. Looking back on all of that.
Right back to Ethan answering my question, but first Diabetes Connections is brought to you by Dario Health and bottom line you need a plan of action with diabetes. We've been very lucky Benny's endo has helped us with that and he understands the plan has to change. As Benny gets older, you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months. reduction of A1C was in three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management could have my dario.com forward slash diabetes dash connections for more proven results and for information about the plan.
Now back to Ethan explaining how they got his blood sugar more stable during and after swimming.
Ethan Orrr 15:03
So to be honest, the only reason it worked, I in my body got adjusted. At the beginning of it, I would have to take seven juices, maybe practice a, like during the entire thing, not not like a one point. But like throughout of like a one hour practice is really bad. But something that we did is I had gummies like little energy energy jam. Yeah, it's like the glucose gels. Yeah, we had glucose gels next to it. Because if you have too many fluids, with swimming, you can get nauseous, especially with it being juicing and eating granola bars before you, when something very hard tends not to work out very well to something that's like flexible with your stomach. So it's not like you're eating like a valley granola bar, and then you're going into pool and wanting to puke.
Amanda Terrell-Orr 16:03
Yeah, even some of the things that you're maybe not remembering because they just became so routine for us is suspending his pump. like two hours before practice making sure he didn't have any insulin on board keyword also, toward the end there where we were waiting for his body to adjust, he would have the equivalent of a meal, about an hour before practice with no insulin to cover it. And he would still getting into the water, those first bit of time would still go very low in a short period of time. So then he would have to sit out like he was saying, you know, have a lot of juice. And then he would be nauseous and not able to swim as well. What the doctor kept telling us is, you know, hang in there, we're going to figure this out, your body's going to adjust. And sure enough that ended up happening. But those are the kinds of things that we had to try in the early part of the season.
Stacey Simms 16:57
Sounds very familiar. My son's first wrestling practice freshman year of high school, he ate 85 uncovered carbs and still would not go above 70. Yeah, I was able.
Amanda Terrell-Orr 17:09
Yeah, the other thing that was really challenging that we had never experienced before, but we know that other people have since we reached out is overnight. Well, after practice, Ethan would have lows that would last for hours, no matter how many carbs we would give him. So then we would have to get to the point where we were micro dosing glucagon with the advice of his doctor in his circumstance to try to bring his blood sugar back up. But there were nights where my husband and I were up for four hours at a time just trying to get his blood sugar into a safe range. And this year, is the first time in all of those years, he's had diabetes, that we had to ask for emergency medical assistance for a very severe low. So it was a really, really difficult time. But what we like to think about that, and you know, he's very resilient, he got through that time. And you know, the type one community was really helpful in helping us come up with ways that we could try to address these big problems that we're facing.
Stacey Simms 18:14
So you brought up the state championships. Let's just jump into that now and talk about what happened and the basis of the lawsuit. And you know, what you hope to accomplish here, but start by telling me and Amanda, let me ask you what happened at the state championships.
Amanda Terrell-Orr 18:29
So the summary version of that, that I would say is that even had several events that day, they were all relay events, which means that he was competing as part of a small team of other swimmers. He had swam to those events. And the last event of the day would have been his final relay event swim. He was standing at the side of the pool with another student next to a referee, and the referee asked Ethan about what was on his arm. And so Ethan explained, of course, that it was a continuous glucose monitor that it measured his blood sugar that it was for type 1 diabetes, and that he had the patch over it to keep it on during swimming, which every athlete knows that everybody's body's different, but you are more likely to need extra cover over your CGM when you're sweating or swimming or that kind of thing. So the referee asked Ethan, who his coach was and who he swam for, and minutes before the event was scheduled to begin the referee address the coach. The coach told the referee all the same information that Ethan told him And in addition, said Ethan has an active 504 plan that allows him to have his medical equipment. The referee insisted that Ethan was in violation of what is commonly called the tape rule, which is essentially the fact that a swimmer can't wear something extra on their body to aid their speed boy The four body compression because those things could give the swimmer a competitive advantage. The coach tries to explain again everything that was going on. And that not one time in the 70s even swam prior to the state championship. Did any other referee believe that that rule applies even. It's always obvious in some of the videos that various news stations have used. You can see it on Ethan's are messy swimming. So clearly referees who are paying close attention to the swimmer to see whether their stroke is off or they're, you know, doing anything else that would be a violation saw this on his arm and no one said anything. So the referee was told that information as well. The referee insisted that in order to compete under that tape rule, he would have needed a doctor's note to say that it was medically necessary. The whole point of the rule is to prevent a swimmer from having a competitive advantage, you would not have to be someone who understood type 1 diabetes to look at what even had on his arm. And know that of course, it would not cause a competitive advantage. Of course, it was just medical tape covering up a medical device, the Dexcom G6 says on it what it is. And I timed it, it takes about 15 seconds on Google to figure out what that is. So if the referee did not believe the information he was getting, and the whole purpose of the doctor's note is to say, you know if needed, and so it doesn't give a competitive advantage. All of that together means that the referee heard all that information. And he either didn't believe it. Or he continued to believe that either was potentially cheating by wearing a foreign device or substance to aid his speed buoyancy or body compression. So at that time, the referee said that Ethan was not going to be allowed to swim. One of the important things that has happened in the news that I know the governing body is having trouble with is the use of the term disqualification. In my mind when the kid doesn't get to swim, the semantics of that don't matter. But it wasn't the fact that even swam in the meets in that final event and was disqualified, he was not allowed to swim the final or that. And so what the coach tells us happens from that point is that the referee says Ethan will not be able to swim, you were required to have this note, he's in violation of the tape roll. And so the referees scramble, because again, he's addressed minutes before the event starts and substitute another swimmer for Ethan. But what the coach told us is that in the rules, when you're going to substitute a swimmer, you have to go to, you know, like the administrative table and make that substitution in a particular kind of way. And so he was not able to do that in that time period. And the coach indicated to us that the relay team was subsequently disqualified for not having a proper substitution. Now, we learned for the first time when chafta issued their statement, that they are saying that the team was disqualified for an early start. And, you know, from our perspective, although it's really upsetting to us that the whole team would have been potentially disqualified on this substitution issue. The fact is, the crux of this is that Ethan was not allowed to swim, because someone incorrectly interpreted what he had on his body is potentially cheating and violation of the taping raw. That is essentially what happened in Ethan's case. And that just started all of the research and that kind of thing that our family did before we decided to engage a lawyer got it.
Stacey Simms 23:50
My question, I had a lot of questions. But one of my questions is, is it your belief, and I assume it is, since you're going to have with the lawsuit, that having a 504 plan, being covered by the American with Disabilities Act supersedes that tape rule.
Amanda Terrell-Orr 24:05
There are several points to what we're saying. So the first thing we're saying is the rule doesn't apply to even circumstance. And although the high school associations have not chosen to be this clear, the USA Swimming rules are very clear that taping for medical devices is not a violation of this taping rule is really about kt tape or therapeutic tape that would be used to support somebody muscles or joints or ligaments or tendons in a way that would give them a competitive advantage. Anybody who knows anything about swimming knows that when something protrudes from your body like a CGM, that it actually causes the disadvantage because we're talking about milliseconds of time and surface drag can actually make him slower. Additionally, we know the rule didn't apply because no other referee instead Prior meet even mentioned it as being possibly implicated by that rule. So let's say he even mistakenly believes that the rule applies, there are a couple things about that he did have a 504. We do think that's important, because the 504 says that he's able to have his medical devices at all times, in all school activities. Secondly, and I believe this is standard across the country, but even had to have a sports physical before he participated in sports that said that he was safe to participate in those sports. So there are lots of reasons that we believe the rule didn't apply. Even if it did, Ethan should have been fine without a specific doctor's note to prove he had type 1 diabetes. And further, the referee under the rules had the discretion to allow even to swim if he did not find that to be excessive. And he says, and he chose not to let even swim. So for all of those reasons, I think the way I described it to someone is there was a tortured reading of that rule to exclude a kid was type 1 diabetes isn't
Stacey Simms 26:13
how is your team reacted to all of this?
Ethan Orrr 26:15
Whoa, I didn't find out until I was literally walking to the blocks. My team was a little bit upset, but because they didn't know what was going on. At first, my friend, I was with one of my teammates. While that was happening, and he's like, going on well, the coaches talk or not the coach, the referees talking to me. And so I was walking to start the event, like I was walking around the pool, and they were like, Ethan, why aren't you sorry? I was like, What? What do you mean? And they're like, you're not swimming coach just said, Go talk to coach right now. We're starting to bet right now. Aren't we? Just like, yeah, go talk to coach right now. And we're gonna talk to him. And he was like, yeah, we're looking. I'm looking at the rulebook right now. And we're all looking at the rulebook really quick, but you're not able to swim. Because the CGM on time. And so everyone was like, why? because they didn't know it was forward. And the teammates that I was with is like, was it that coach, or, or the rapper or whatever? I was like, yeah, know what? He was like, yeah. I don't know what to tell you. I was like, Oh, okay. We were all upset about it. I was really dumb. Did
Stacey Simms 27:26
they support you? I mean, in these days in the time that has passed, tell me about that.
Ethan Orrr 27:32
Oh, yeah, no, they've always, I'm friends with everyone on the swim team.
Amanda Terrell-Orr 27:35
They're all super great. My coaches super great. The trainer for the cornado, the school that I stand for, is really great. My teammates are really supportive whenever I would have to get out, you know, they just, they'd make jokes, they'd be funny about it, like try and like lighten it up and whatever. They're really great. They're a really great team, they are really great team, I'm still going to swim for them this year, I'm still competing for I'm going to try and compete for state this year to this. I think the other thing, even in terms of the support even got, we we really can't say enough about this coach and the athletic trainer, it was a difficult season for them to of course, because of everything Ethan went through. So this happened, the state championship happened at the end of June, at the very beginning of July, the coach actually sent an email to chafa and laid out the situation of what occurred, asked if they would work with him, because he believed that what happened could potentially be a violation of even federal right. And I spoke with the coach kind of throughout that time. But at the end of July, I spoke with him more in depth and and I really wanted to know what kind of response he had received, he had received zero response to that email. So here we have a coach that's trying to act, you know, advocate for his student with diabetes and try to get something change. So this wouldn't happen again. And he received no response to that,
Stacey Simms 29:04
you know, Amanda, a lot of people are going to be really excited that you've done this and want to see this change and are rooting for you. But a lot of people are also going to be wondering why a lawsuit. There's just so much that happens to you all. When you file a lawsuit, you're going to get a lot of negative attention, you're going to get pushback, we file the lawsuit and what are you seeking in the lawsuit?
Amanda Terrell-Orr 29:26
So I'm glad that you raised that. That's one of the points that is confusing to people. We actually have not filed a lawsuit we filed a complaint with the Department of Justice alleging a civil rights violation. So that process is a different kind of process. That's not about monetary gain for anyone. That process is about the Department of Justice investigating whether or not there was a violation of even civil rights and if so, what kind of oversight is necessary over the governing body so that athletes with this abilities don't experience those kind of violation. So it's essentially a mechanism to enforce oversight and change, but not a mechanism whereby we would receive any funds whatsoever. Our lawyer is doing this pro bono. If we were to file a lawsuit, that would be a different circumstance. But it isn't our goal. To get money out of this situation, our goal has several parts to it, the main part of it is both the national and the state rules need to get with the times and make the kind of changes that USA Swimming has made. That makes it clear that taping of a medical device is not cheating. That is the primary thing that we need to see. I also truly believe that chafa in their rulemaking process needs to include the voice of athletes with disabilities, or people who have a lot of familiarity with those areas, I think that would help give voice to some of these areas where they clearly have not educated themselves. And I just think that voice is so important. So those are a couple of the main things that we're trying to get accomplished here. And, you know, in general, the governing body had the opportunity to say, we really care about this, we want to work with these folks to try to make change. We had one referee interpreted this way. This isn't what we believe as a system. But their statement, you can see, it's clear that they believe that discriminatory reading of that rule is the right reading of the rule. So we need some help from Department of Justice or other avenues to force the issue to get them to change. What kind of tape do you use? Do
Stacey Simms 31:45
you mind? I mean, you can share a brand name or just you know, because there's so many different overlays for the Dexcom. I'm curious what it looks like
Amanda Terrell-Orr 31:50
he was wearing the simpatch. Got it. And one of the things that I've been saying to people, if they're not swimmers, or athletes, they don't necessarily understand the difference between my kcca for therapeutic tape and Matt. But as you know, and as other people who use those overlay patches, now, that patch was specifically exclusively and obviously designed for that purpose. It has a perfect cut out just for made for the exact model of CGM that you have. And it's clearly obviously just holding that device on. So anyone who looks at the simpatch, or any other similar kind of patch, can easily understand what it's there to do. And not that and understand that it's not there to aid his speed, buoyancy or body compression, it can't do any of those things. And it's clear that it can't when you look at it,
Stacey Simms 32:45
he said you've said you're gonna start swimming again, you want to make it to the states again, why is this got to be very disruptive to you? This can't be a fun thing to be going through. Tell me why you like swimming.
Ethan Orrr 32:56
It's one of the hardest sports for you to be able to do. I really enjoy the individuality, but also how you work as a team. I mean, no matter what the points that you get for individually swimming, impact the entire team on in deciding if you win or lose the knee or event or competition, whatever, whatever composition, I really loved swimming, I've always loved swimming. But once I got diabetes, there's a we couldn't manage it properly without being safe. But nowadays I can. And I totally love to pursue it. I feel like it's great. It's great for the body. It's great. It's great in general, and just to get your mind off of whatever I mean, I think this is an amazing sport. And I'd love to pursue it. So even if we've had troubles, hopefully, we shouldn't have those same troubles. If the if we get the rule change that we need and want then I shouldn't have the problem, then I can swim and still compete. I don't hate chess or anything like that. I just want some real change. You know, before I let you go,
Stacey Simms 33:57
Amanda, let me ask you what I saw this story on social media. I feel like it's been in every diabetes Facebook group. Obviously it was local television and got picked up by national media. What's the response been like for you?
Amanda Terrell-Orr 34:08
What I want to focus on is the positive first because that is the overwhelming majority of response we've gotten. We've just received so much support. We've received support from jdrf. We've received some for support from Team Novo Nordisk we've received support we were contacted by Dexcom. So all of those are good, but also the heartfelt messages that we've received from other parents of athletes with type one have been moving and have really helped support us through a time where we're getting the kind of attention that we did not expect from this. We expected that we would file something that our lawyer would do a press release and a couple of local channels would be interested. And then we would just wait and see what happens. This has been way more of a response than we expected and the back much Already in that response has been positive and supportive. But as we know, in the public domain, there are always people who don't think about the consequences of what they say on real people. And they come after, you know, a 16 year old in their comments. And so early on, our lawyer told us don't read the comments. And that was really great advice. So now, we basically just engaged with people who have commented on, you know, like a diabetes, Facebook post, or some other kind of social, that's from folks who understand that better. And, you know, we've kind of asked those people who are supporting us, if they're reading the comments, they can address those issues, they can address people who are trolling us. And that would be really helpful to us, because we just can't be beat up that way. But I also think chaffles response was very disappointing to us. And it felt like they were minimizing denying and blaming. And they had the opportunity to look at this much differently in a way that was geared toward change that could allow student participation. And they chose not to do that. It felt like backlash to us that they chose to respond in that way. But by and large, boy, we really appreciate all the support we're getting, it's really the fuel that keeps us going. Because this is hard, it's really hard to be in the spotlight this way, and even made this choice themselves about whether we were going to do this after a lot of research. And so it's wonderful when people support him and say, Thank you, Ethan, for doing this, and lift him up around his struggle. That is just been wonderful.
Stacey Simms 36:44
He's gonna let you have the last word here. When you hear your mom say all this stuff, like what's going through your head? Did you think it would get to this point where it's not nationwide?
Ethan Orrr 36:53
Honestly, no, I was surprised that it got really big, really quick. I was not expecting that at all. So I'm really happy that that people are supporting it.
Stacey Simms 37:06
Well, thank you so much for joining me, keep us posted. love to know how this moves forward and plays out. But thanks for explaining. And, you know, we wish you all the best. Thank you both.
Amanda Terrell-Orr 37:16
Thank you so much for having us.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 37:30
More information at Diabetes connections.com. I'm gonna link up some of the stories about Ethan that some of you may have already seen most, we're gonna try to link up some follow up as the story progresses, because we're really just at the beginning here, you know, I'm going to follow through this complaint with the Department of Justice, see what the rule changes are like if they come through and see if other clubs and athletic associations follow suit, or do anything that is proactive. If you find something in your local community, let me know if there's a rule change because of this, or I gotta tell you, we've already talked to the coach about Benny's wrestling, and you know how he wears his equipment. I'm double checking, I just want to make sure that we're all good, because while he has been fine so far, and last year, we saw a ref wearing a T slim pump at a couple of the meats. I didn't go over. But Benny did go over after the meets and just say hello, when you just showed us pump and that kind of thing. But even if the ref has type one and wears a pump, you know, there still may be a misunderstanding of the rules. So I I'm definitely double checking all of that, to make sure that we're not gonna have any issues this year. It's complicated.
I gotta tell you that my favorite part of the whole story is how Ethan's teammates have hung with him. Right. And they haven't made him feel different. They haven't made him feel like he's to blame for things. We've been so lucky with Benny that he's surrounded with people who support him as well. And if you heard the episode he was on a couple weeks ago. He says part of that is because he just doesn't want to be with people who don't support them. And we're really, really lucky that he feels that way. So Ethan is lucky as well. But Big thanks to Ethan and Amanda for coming on so quickly and sharing this story and making some time for me.
All right, Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom system since he was nine years old. We started with Dexcom back in December of 2013. And the system just keeps getting better. The Dexcom G6 is FDA permitted for no finger sticks for calibration and diabetes treatment decisions you can share with up to 10 people from your smart device. The G6 has 10 day sensor wear and the applicator is so easy. I haven't done one insertion since we got it Ben he does them all himself. He's a busy kid and knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is reassuring. Of course we still love the alerts and alarms so that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
If you are listening to this episode as it goes live on September 7, then I wish you a very happy new year. It is the Jewish holiday of Rosh Hashanah. And as you probably know, these podcast episodes are taped and scheduled in advance. So I am not working today I am celebrating the new year with friends and family. And I don't mind sharing that. We always go to our same friend's house. I don't have any family locally here in the Charlotte, North Carolina area. And our friends this year, were probably having like 20 to 30 people, they bought COVID tests for everybody those over the counter COVID test as I'm taping, I haven't taken it yet. When you're listening to this, I will have taken it. But I thought that was really interesting. We're all vaccinated this group we've gotten together before earlier in the summer, it was actually the first group of people that I got together with in Gosh, I want to say maybe late May, you know, we'd all been vaccinated, but he's really excited. Nobody knew Delta was coming. And so we know we're all reacting to this in different ways. I'm really, I guess the word is interested that this is going on. I wonder how many other people are doing this for small private gatherings. I'm excited to be celebrating and may it be a sweet and happy new here because my goodness, we definitely need it. So I'm gonna leave it there.
Big thanks to my editor John Bukenas from audio editing solutions for really jumping in here. We put this together much more quickly than our usual episodes. So thanks so much as always, John, and thank you so much for listening. I'm Stacey Simms. I'll see you back here on Wednesday for in the news. That'll be Wednesday live on Facebook at 430 Eastern Time, and then we turn that into a podcast episode for Friday. Alright, until then, be kind to yourself.
Benny 41:35
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrong avenged
This week "In the News.." Did wearing a CGM in the water disqualify a high school swimmer? What his family says happened and why they're suing. The ADA wants to start using the word "remission" instead of "reversed" for type 2 diabetes - we'll talk about why. Dexcom says they are no long smoothing data, new migraine and diabetes research and T1Interntioanl is out with their latest survey results about the price and use of insulin.
Join us Live on Facebook each Wednesday at 4:30pm EDT!
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
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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 - 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.
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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.
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Top story this week.. A discrimination complaint against the Colorado High School Activities Association has been filed with the U.S. Department of Justice. At issue? A student was disqualified for wearing his continuous glucose monitor. Ethan Orr is a 16-year-old swimmer whose team qualified for the state championships.
According to his attorney Orr wore a blood glucose monitor taped to his arm during seven prior matches, including the one in which his team qualified for the state championships, with no issue.
But at this meet, the ref said Orr would not be allowed to swim in his last race because of his glucose monitor and tape. They didn’t have a sub so the whole team was disqualified.
The attorney says, “This is simply blatant discrimination against a kid with a disability, and it led to unnecessary and unfair consequences to him, his teammates, and the school,”
According to the lawsuit, Orr is protected under two federal laws - the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973.
I’ve reached out to the local reporter on this story and hope to talk to the family soon
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People with type 2 diabetes should be considered in remission after sustaining normal blood glucose levels for three months or more without medication. That’s a new consensus statement from the American Diabetes Association® and several other international groups.
They recommend testing every year to determine long term maintenance.
The real news here - as I see it - is trying to get people to stop saying “Reversal” or “cure” when it comes to diabetes. The statement here doesn’t seem to be about the science, but says the word remission “strikes an appropriate balance” between the diabetes not being active and progressive, but also recognizing improvement may not be permanent.
https://www.diabetes.org/newsroom/press-releases/2021/international-experts-outline-diabetes-remission-diagnosis-criteria
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Got lots of comments and questions about some changes noticed on the Dexcom G6 app recently. Turns out, Dexcom has removed what’s called data smoothing from its most recent update. As of August 9th they say
“The Dexcom G6 app used to smooth all but your current reading on your trend graph. With data smoothing, there can be some differences between the G6 reading you see in real time (the white circle) and the G6 readings you see in the past on your graph (black dots). I’m showing a photo here - I’ll post this with the podcast episode for those listening.
To avoid these differences, we removed data smoothing from the Dexcom G6 app in the 1.9 release, but the Follow app and Receiver continue to smooth past CGM data. We will remove smoothing in an upcoming Follow app release to match the G6 app, but we don’t plan to remove data smoothing from the Receiver.”
These differences don’t affect the real-time glucose data, alarm, or alerts. Honestly, I’m not sure why they’re doing this or why they smoothed in the first place.. but we’ll follow up and try to find out more
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Not a lot of answers here, but this is interesting.. apparently, people with type 2 diabetes are unlikely to develop migraines and people who get regular migraines are less likely to develop diabetes. To find out why.. scientists are looking at two small proteins that are linked to migraine and drive production of insulin.
This team from the University of Tennessee says some of the newer treatments for migraines could increase the risk of diabetes because of the use of these proteins. They want to figure out how to prevent that.
https://www.fiercebiotech.com/research/mouse-study-shows-how-causes-behind-migraine-pain-can-improve-diabetes-treatment
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T1International is out with results of their 2020 global out of pocket cost survey for people with type 1 diabetes.
Worldwide, one out of every four respondents reported having under-used their insulin at least once within the last year due to high cost.
63.2% of participants reported disruption of insulin supplies and 25.3% reported an increase of insulin prices related to the COVID-19 pandemic.
They’ve conducted this survey every two years since 2016, adding additional questions each year. This time, the Results were published as a research paper in the Journal of Diabetes Research and Clinical Practice, linked in the show notes.
https://www.t1international.com/access-survey/
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More to come, including news about a rare form of diabetes, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.
Real Good Foods. Where the mission is Be Real Good
They make nutritious foods - grain free, high in protein, never added sugar and from real ingredients - I was in Target this week and I saw the new Entrée bowls, I bought the Lemon Chicken and the Lasagna. The Lemon chicken was great! It uses hearts of palm pasta instead of regular noodles which I thought sounded odd but really tasted good. They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com.
Back to the news..
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This is from the UK but I think it’s an important reminder that there are more than 2 types of diabetes. It’s new plan to discover and treat mono-genetic diabetes. That’s caused by a single gene mutation - although the specific gene affected can differ. The condition occurs in two types, neonatal - which can occur within the first six months of life - and MODY that develops later, often before the age of 25. About 2% of all diabetes cases are thought to be monogenetic.. the National Health System in England is forming a new training and treatment program to make sure these patients received the correct treatment sooner.
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And finally, thousands of people in the path of Hurricane Ida are still without power and possibly need help getting their medication. I want to make you aware of the Diabetes Disaster Response Coalition (DDRC).
This is a coalition of lots of diabetes groups - if you need immediate help or want to plan for an emergency, they have the resources.
Physicians and health care providers can call 1-314-INSULIN to report diabetes supply shortages and request support. People with diabetes and their loved ones can call 1-800-DIABETES (800.342.2383) is available to support people with diabetes and their loved ones for more information.
https://diabetesdisasterresponse.org
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Please join me wherever you get podcasts for our next episode -Tuesday - we’re talking to the folks from Walmart about their deal with Novo to sell their own brand of Novolog Insulin.. The episode out right now is with MannKind, makers of Afrezza inhalable insulin.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
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.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode transcription below:
Stacey Simms 0:00
Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom This is Diabetes Connections with Stacey Simms. This week all about Afrezza How much do you really know about the inhalable Insulet. I had a great conversation with the people who make it
Mike Castagna 0:34
For me, it's about using the right product to meet your needs to get you in control. And if you're doing well, great, we're going to avoid the long term complications. But if you're not doing your health, and you gotta really try to find the best set of tools, they're gonna make you successful and fit your lifestyle.
Stacey Simms 0:47
That's mankind CEO Mike Castagna. We talked about how Afrezza works misconceptions the worldwide market pediatric studies and lots more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. We so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin. And this week, we're talking about the use of the only inhalable insulin, my son was diagnosed with type one right before he turned two, he is 16. My husband has type two diabetes, I don't have diabetes at all. But I have a background in broadcasting. And that is how you get the podcast, I have to say that personally, my family is very interested in Afrezza Benny really would like to try this seat. Of course, as I mentioned in that tease up there, they're looking at pediatrics, he is still under 18. So it's not proof for his age group. But we're watching it really closely. And I have a lot of friends. A lot of bloggers and people in the diabetes community have talked about this for years. And some things have changed. So I wanted to have them on the show and find out more. So a little bit of background for you. If you are brand new to all this, Afrezza was approved in the United States in 2014. And the company that makes it is mankind. For a while it was sold by Santa Fe, but then mankind took it back. It's one of those things where sometimes the business side seems to have gotten more attention than the product itself. So what is Afrezza it is a powder, it comes in cartridges, and you suck it in you inhale it with a special inhaler device. To me, it looks more like a whistle than a traditional inhaler like an asthma inhaler. It's not like a big tube. I'll link up some photos in the show notes. I'll also link up the Afrezza website so you can learn more and see their information.
And my guest this week is Dr. Mike Castagna, the CEO of mankind now he has a Doctorate of pharmacy, he worked as a pharmacist behind the counter for CVS at the start of his career. But then he went back to school and he got an MBA from the Wharton School of Business. He's fun to talk to he doesn't mince words, and he truly believes in this product, I do have to tell you that Mike mentions monomeric insulin a couple of times, I'm going to come back after the interview and explain more about that give you a better definition. All you really need to know is that it's faster than how liquid insulin is made. And all of that in just a moment.
But first Diabetes Connections is brought to you by Daario. And over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions on how to succeed, get the diabetes management plan that works with you and for you, Daria is published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash Diabetes Connections.
Mike, thanks for joining me, I'm really excited to catch up. And look, I'm stuttering because I can't believe this is the first time we're talking to you. But thanks for coming on. Oh, thank you, Rodney. I'm super excited before we jump in and start talking about Afrezza Can you give us some perspective kind of dial back because mankind is not. It's not a name that came out of nowhere? There's really important history. Can you kind of talk about that a little bit first?
Mike Castagna 4:14
Sure. Mankind comes from our founder named after Al Mann and Al Mann was a true innovator. He started I think 17 companies and everything from the cochlear implant to the pacemaker to insulin pumps that many of us know today as Medtronic used to be called mini med. And Al Mann built the insulin pumps over the 80s and 90s and was very successful and sold that company to Medtronic. And then he took literally $1 billion of his own money and invested in mankind. And he had put this company together through three companies he owned the technology to make Afrezza was really a combination of companies and the reason he was so dedicated as he saw in the pump market, which we now see today on CGM was that the variability in mealtime control was so high and the fluctuations you see that the influence takes about an hour and a half to kick in. And it's hard to get real time control if you can't get a faster acting insulin. And so he set out to make a real time acting insulin, so phrases and hailed as monomeric. And that was really what the magic was in our technology making a dry powder was was free dryness, if you heard of dippin dots ice cream, we have basically large dipping machines in our factory, but we free dry the particles to make a freezer and under stabilize the monomeric form. So when you're inhaling, you're inhaling influenza, as soon as it's in your blood is active, or when you inject it has to hold hexamer and has to break down there were about 45 minutes. And that's how you can make it stabilize an injectable form. But it has to break down and then it starts working. And that's why there's always this lag effect between we see injectable and foam in and help us is very different products were categorized with real time rapid acting, but the name mankind comes from elmen and the guy who probably 60% of people on pumps have their own pumps that he created. So amazing gentlemen, huge contributions to diabetes and millions of people were alive today because of his work and his generosity and roven to take that forward here and kids and frozen inhaled insulin.
Stacey Simms 6:06
I mean, never look at dippin dots the same again.
Mike Castagna 6:10
I see a large factory of they don't like it, you know, we can always make different types of things don't go well.
Stacey Simms 6:15
I love it. Let me ask you to go into a little bit more detail about how someone who uses Afrezza would actually use it. Can you talk a little bit about like a daily routine?
Mike Castagna 6:25
Yeah, I mean, I know, you know, well, you're in this disease. I mean, people sometimes graze all day, and they just kind of ride their sugars and take a little bit some along the way or many boluses. And some people you know, eat once or twice a day, or some people, you know, carb restricted and everyone has a different way. And I think that you know, the big thing difference was for the patients that I see is, it's in the moment, meaning you don't have to time your meal and your insulin, when you're going to take it and where you're going to be. As soon as your food arrives. You take your first dose.
Stacey Simms 6:50
Most people I know who use Afrezza take a long acting insulin with it. Is that pretty standard for people with type one?
Mike Castagna 6:57
Yeah, I'll take one year, right? Yeah, you need a basal insulin of some sort, you know, and, and a meal time was held, we do have some patients on pumps where they will use their punches for their basil, for example, and use a phrase for real time corrections. So you know, the average patient is very different. We have some patients that are type twos, you know not not on any basil, you'll need to be on basil for if you're type two. But if you're type one, you need to basil, long acting insulin, and you need your meal time. And we know the biggest problem in this country is still mealtime control is the number one thing people with diabetes struggle with. And it's a big reason why, you know, six, or seven or eight, you know, eight out of 10 people basically are not a goal on insulin because of the mealtime control. So it's a daily challenge for everybody.
Stacey Simms 7:39
Can you talk a little bit about how Afrezza is kind of measured out? Because when we think of mealtime, insulin, everything's a carb ratios. And especially as I mentioned, if you're on an insulin pump, you're you're putting in the carbs that you eat. So how does that work?
Mike Castagna 7:51
Yeah, it's funny, I get into many debates with people because, you know, I'm a pharmacist by training, but I'm not the smartest guy. But I couldn't do all the work people do every day to influence sensitivity ratios and carb counting and timing. And all I can tell you is everyone's masks off by 50%, one direction or another. And so we have this false pretense that we're that accurate. And dosing are influenced by down to the half a unit or one unit. And the reality is your angle of injection can decrease, you know, change your absorption by 25%, your site of injection can change absorption, your your stress level can change your impact with your insulin, there's so many things that go into your daily dosing of insulin, that, you know, being that precise, down to the unit is not as accurate as we all think. And I think that's that's one of the misnomers of, you know, the timing is what you really struggle with when you're using injectable insulin, and you just don't know what's going to happen. You know, when people I guess doctors often you know, you don't have to carb count with Afrezza . And they give me funny looks. And the reality is, you know, we've never done a study where you're carb counting to get your dose of insulin, that's, you know, so becomes a four 812 dose linear all the way up to 48 units, it's additive, and you just got to be close enough. And so it's about a two to one ratio, you know, there's no direct pulmonary equivalent to injectable insulin, unfortunately, but, you know, people are taking five units of injectable insulin per meal, they're gonna need about eight units of Afrezza and maybe even 12. And you're gonna figure that out, it's your first meal or two what what the right dose is for you. But you just got to be close enough. And that's a big misunderstanding for people of how accurate the dose has to be. This is the sixth dose cartridge is a big problem. I know plenty of type one patients who take for a 1224 meal, especially they haven't Chinese food or sushi, they just they dose a lot. So I think that's something people have been comfortable, so dramatically different than anything they've ever been trained or taught in their history of living with diabetes.
Stacey Simms 9:36
I would assume that a prescription for Afrezza comes with a doctor's visit where someone whether it's someone who works for Afrezza, or the endocrinologist talks to you about how to do this dosing. You said you figure it out, but I've got to assume that you're not just sending people home with this inhalable and say, just test it, I mean, right somebody, you're at a ratio
Mike Castagna 9:59
and I think That's the key thing is, you know, having patients understand because it's odorless and tasteless. So you inhale, and you're like, what did I get it? And I'm like, yeah, if you inhaled, and I have the second, it's in your blood, it's in your lungs, it's breath activated. So you can't really, of course, you can try to mess up something. But we have something called Blue Hill, where we can show proper inhalation technique in the office on an iPhone app or an Android. And so you know, we hope that patients are being trained either by our trainers or the doctors offices, and will propagation technique looks like that's number one. And then number two is the right dosing. And as you know, individualized dosing is important and fun. And, again, that's why I say we take a lot of the math out because it's either gonna be a four or an eight, and all of a sudden, you're like, Oh my god, I'm gonna take an eight units, it's a lot it's really not when you're taking inhalation units versus injectable units and that's what people got to get comfortable with if their first or second dose so they really do figure out this meal did this or pizza is going to take longer so pick another dose and now our people do figure it out pretty much within the first week. And then there's one thing actually I want to mention because I often forget this is because injectable insulin is such a long tail it's in your body for four to six hours before it's out and that feeds into your basal rate your long acting and so when people switch over presence pretty much out of your body in a net roughly an hour and a half. Sometimes people need to adjust their basil and that's something to watch out for if you do switch to Afrezza enter you're struggling with with some of the basil rates. Some patients you know I hear people anecdotally you know, we don't want to study their the bump up their basil 10 15% on Lantus. And I've heard patients on to see that because it does have that long tail of down there in front sometimes on the basil. So there are the other metrics patients have to watch out for when they are switching to the product. It's not just the uptime, it's also something that basil where you look at
Stacey Simms 11:38
I have a question and I i apologize because it's a it's a bit ridiculous. I'm gonna ask it anyway.
Right back to the interview in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon, it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle, you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon.com slash risk. Now back to my interview with Mike, where I will ask that ridiculous question.
You had mentioned it's tasteless, odorless, I recall hearing and I'll have to fact check this. But I recall hearing that years ago dandruff shampoo, they had to add like that tingly feeling because people didn't think it was working like it's totally fake. But people just didn't believe it was a medicated shampoo because it didn't have an unpleasant sensation. Have you thought or talked at all about adding like a flavor or a feeling to so people really know that they got it? Or is that just really bananas?
Mike Castagna 13:12
If somebody might company come and talk to you ahead of time? There's somebody internally who wants us to look at like cherry flavor Afrezza especially as they go into pediatrics? And the answer is, look, there's blueberry Metformin because the metformin smells awful and tastes awful, probably. So you know, those things are possible. We've never done them. And to my knowledge in this industry with dry powders, it is a question that came up recently. Is that should we be thinking about the cherry flavor Afrezza or some other flavor? And I think the answer is TBD. We I don't know what the date is on inhaling the food coloring dye or whatever. Yeah. But that's some of the stuff we have to justify that it's safe and effective. And along with FDA would want us to test but they come up recently and another internal discussion. And since you're asking, I think we'll look at it, even if maybe there's a way to even show a placebo, that's a cherry flavor or something right a one time dose to see what it's like. So I don't know. But now, but people like I said, it's sometimes you get a call, like you know, when you take a phrase of one out of four people will get a cough initially. And generally there were the first four weeks that cough goes away 97% of the people. So I always tell people, you're having a cough, like as long as not interrupting your life, it should slowly get to your first refill. And it should be mostly resolved by that your body's getting used to putting a powder in your lungs. But that's uh, you know, when people ask, what's the difference between injectable and inhaled in terms of safety, you know, you're putting a drug powder in for the first time in your body and your body could choose that. And the number one thing that's different, were injectable insulin. You know, you have other other things. You're dealing with injection sites and pump sites and scar tissue and things like that.
Stacey Simms 14:48
Does the body actually acclimate to the powder or is it just a question of someone gets better and used to the inhalation sensation?
Mike Castagna 14:55
You know, it's it's a good question. I don't know if I have a black and white answer here. bodies give. Yeah, my guess is the body's getting used to putting a dry powder in and just exit and you get used to like weed. You can drink a glass of water before and after and help you minimize it. But it's generally like that's what it feels like it's not a productive call frightening, there's not a call to happens 10 minutes later, it usually happens. We have to inhale.
Stacey Simms 15:17
You mentioned BlueHale , can you tell us a little bit more about what that is?
Mike Castagna 15:21
Yeah, so BlueHale is to two different things. The first one that we're looking at is with the patient training device. So we can show you whether you had a good emulation or not a good emulation and show you that technique. The second version, actually, you can detect with those you put in the cartridge and hilar. So it has a proprietary software there that we can see what cartridge you put in for the adapter. And it'll tell you on your app, if you took a for a 12 or 16, how much you took in that session. And then we hooked integrate that with the CGM data. So now you can show those response curves on CGM one day and eventually I want to get into AI and predictive analytics. But we're not there yet. But we think that's the magic of what people really want, which is one that I use the thing when you live with diabetes, you just must remember and be that perfect to know exactly what those you did with them. You took it, what meal you were and then I simulated being a patient for a week. And I realized I could remember if I took a four and eight, I take a six or 620 is that 30 minutes or one hour like it was it was amazing. When you just think about life and people are human. They're there. They're human. So they're not keeping track. And they're not that accurate. They're just estimating. And that's when I talked about the dosing of insulin, like we're always estimating everything, we're estimating the time our food is going to come and how long it's going to work. You know, what the carbs are? How much am I gonna eat or drink? Like, it's all accurate? It's all off. None of it's that accurate. That to me is the thing I realized when I was thinking of doing one of those a disease, you don't you think they're perfect. They're not. They're human beings. And that's when I see one out of five doses of injectable insulin are intentionally missed. And the predominant one that's missed is actually lunchtime, which makes sense to wear out in a social environment. They don't want to inject. And by the time they get back, they forget it's probably too late. Or you're already high.
Stacey Simms 17:00
What do you mean by intentionally Miss? You mean? Like they people just forget?
Mike Castagna 17:03
No, no, they intentionally knew they should take a dose of insulin, but they're in a lunch conversation, or they forgot their insulin in the office. Or they'll have their CGM receiver on the bike, or they essentially don't they miss one of the five doses. So if you're missing 20% of your doses, it's really hard to get in control. And there's all kinds of reasons, but that's intentional omission versus unintentional. Which is I forgotten.
Stacey Simms 17:23
I'm curious what the sources on that that's, I mean, I don't doubt it. I'm just curious.
Mike Castagna 17:27
Yeah, I couldn't find it. follow up on that. I have your email, I'll look for it. Yeah, no, because I didn't believe it. And then there was a study done with one of the pens coming out that has digital connectivity. And I looked at it and I looked at the data and like, wait, if a person needs three times a day, seven days a week, that's at least 1721 doses, right? And I think the average person is taking like 1212 shots a week. And I'm like, Well, that doesn't make sense. But you realize, you know, again, we're human, people aren't always as compliant as we want, or they don't eat three times a day perfectly are the two big meals, you know, everyone does something different. So having insulin that meets your needs, and your lifestyle, I think is really important in the world. And you know, look, we like our products, obviously, we're here, we love the Afrezza. But But I also just for me, it's about using the right product that meets your needs to get you in control. And if you're doing well, great, you're gonna avoid the long term complications. But if you're not, you own your health, and you got to really try to find the best set of tools that are going to make you successful and fit your lifestyle. And, you know, obviously, we're not doing well when 80% of people on insulin on a boat. I mean, that's that, to me is the number one thing, I look at this country and say, well, despite all the adoption of pumps, and technology and CGM, we still have not made a meaningful difference in percent of people to go. And that's frustrating.
Stacey Simms 18:35
Way back in the beginning of this interview, we talked about Chinese food and pizza. And I'm just curious, you know, these are things that are hard to dos for, because they they kind of they come later, you know, what most people listening are very familiar with, and I think probably have their own system for dosing, whether it's an extended bolus or injecting more than once. How would you do something like that on a Friday? Is it a question of you would take what you think when you're eating, and then again, in a bit later, like, how do you account for those high fat foods?
Mike Castagna 19:02
Yeah, you know, I'm going to pick on Anthony Hightower, who I know you interviewed before. So I actually met Anthony on a bed over social media. And he had showed me your servers where he ate pizza. So I'll pick on him because I want the public discussion here, sir. He pizza and his sugars are basically flat over the two, three hours post meal. And I said, I'm like, shocked. He's like, this is something people cannot do naturally on the history of injectable insulin, they they always struggle. And when you eat pizza, you're going to struggle not just for hours, but potentially for the next day because just throws everything off. I think in his case, right? I've watched him he took a big dose up front, you know, let's say he's gonna take 12 units of injectable he took 24 units of Afrezza. And then he washed her wasn't an hour, and then an hour she was above where he started. He took another dose, maybe took a four and he has to tap it off. And then an hour later, just thought was too high or not right. But you can always keep your sugars in that kind of control. That's one of the studies we did back in 2018, called this test study was showing that you could do as soon as one hour with no more hyper risk. And that was a big concern of people, how can I do that one hour, well, pretty much hit its peak effect in one hour. So if your servers are still moving in the wrong direction, you can correct them at that point. And so that's where someone on pizza or Chinese food, like, yeah, it's a high dose up front and may manage it through the whole system. Or they may see an hour or two later, they're still high and to take another dose, that they can bring it down at some point.
Stacey Simms 20:20
Alright, let's talk about the big questions that people generally have. And that the one I hear the most is, Is it safe? Right? Is it? Is it okay to inhale this stuff into my lungs? Can you talk about the studies that you've done?
Mike Castagna 20:32
Yeah, I think if we were able to make inhaled insulin 100 years ago, we'd be scratching our heads those who would inject themselves three times a day. So I think it's just an unfortunate matter of 100 years of difference. But we studied a phrase that probably over 3000 patients 70, some trials $3 billion over 20 years, like, that's how much money time and energy is going into prove the safety and effectiveness of this product. And you know, and I tell people like you know, there is no data to say that it's not safe. We have all the rodent studies, all the CT scans that along looking for fibrosis looking for pulmonary issues, we found nothing. So it doesn't sit in the lung. There's an old product called exubera on the market years ago. And exubera was a sugar based manatal formulation which got absorbed over time into your lungs in a friend this case, the it's got water and human influence. So when we ask about what ingredients are you worried about the human influence, human influence, it's the whole AI base, but it's human influence characteristic, and water is purified. So we know that safe and the other only other carrier in our products SDK p which is a excluded product that is not metabolized in the body, it's just 100% extruded. So you know, there's three ingredients in our product. One is human insulin, one is water, and one is tkp. And SDK p comes out of the system. So I don't I don't think the body is afraid of human insulin. And what are so I think, you know, I always struggle with this topic. Because, you know, what happened is there was some lung cancer cases and Newser, were they there was a couple of our data. But you know, in the seven years since FDA approval, we've seen no safety signals come up in the postmarketing. We have almost 10,000 patients on the presidency. I know people in the drug for 1012 years. And so, you know, we don't see anything that gives us concern. And we're going into kids now, who would have to take the drug for 40 5060 years. So I think it's hard to prove something that you've never seen. But safety comes with time. And I think the good news is product has been approved by the FDA for seven years now. And we've not seeing any safety signals in our database, which we look every year, our rems program ended early by the FDA and and we've continued to show good data and all the studies we've done, we've not seen anything new come up in our anywhere safety issues. So if you're, you know, the populations, I would say if you have COPD, and asthma, this is not the right drug for you.
Stacey Simms 22:41
So a dumb question, though. If you have diabetes, and you smoke, can you get an Afrezza? prescription?
Mike Castagna 22:48
We would say you should not? Yes, we have a warning for that.
Stacey Simms 22:52
Well, I just wanted to be clear that there was an actual warning, it wasn't just a please don't because it's bad for
Mike Castagna 22:57
warning. Don't
Stacey Simms 23:00
tell me about the study with kids. Because I've got one, I've got a 16 year old who was quite interested in this product.
Mike Castagna 23:06
Yeah, no, I just found out Unfortunately, the dagga three year old cousin in the family have just come down with type one. And she will, she'll be four and our studies gonna go down to four years old to 17 years old, when we launch it. So I'm excited, we had to do a study to show that the pharmacokinetics and dynamics of inhaled insulin are similar in kids as it as adults. And so once that study was complete, we we wrote a protocol down to the FDA and said, We'd like to go into the next phase, and now run a larger study head to head against the standard of care. And the FDA has pretty much signed off on that protocol at this point. And we have contracted with a third party to now run that trial. And we'll be having our investigator meeting here in next month. And so hopefully, we'll see our first patient in the four to 17 year old range, probably here in September, October time frame. So super excited, long time to get here took too long from my perspective, but can't wait to help kids. But our founder Outman invested, he became very wealthy when he sold the insulin pump company. And he took $1 billion of his own money and made Afrezza inhaled insulin because he felt the problem with the injectable subcutaneous delivered insulin was it just took too long to work. And you know, somebody has an hour lag effects from food. That's real timing, it's always hard to catch those two even. And so he really wanted to make an inhaled insulin that really mimic a physiologic insulin that you see in the body. And he felt the only way you could get there was through a dry powder, lung delivered instantaneous insulin, you can also get there through an implantable pump. But that didn't work out when they tried that back in the 90s. I recall. So people got infections and things like that. So that would that didn't work. So they really were going to get a in my mind that physiologic inform that's gonna be monomeric stabilized is probably going to happen only through the inhaled route. So we have we have to get comfortable with this from overall efficacy and safety. Otherwise, you're not going to really ever get this control that people are looking for real time.
Stacey Simms 24:55
No man, he lived long enough to see Afrezza approved, didn't he?
Mike Castagna 24:59
He's All approved. And unfortunately, I'm here because he died on my daughter's birthday. So I was debating whether to come to mankind or not. And I'm very superstitious, the Al Mann pick the day he died. And he died February 25 2016. And then they made decision to join and help save the company and save a frozen kick on the market. Because I think, you know, I saw all these wonderful patients stories online. And I said, these patients like Anthony Hightower is one of them, what they did something that no one else did, they did something we never did in our clinical trials. And so I got to talk to them. And I realized we just didn't dose it properly. So you go back to the development of the product, a lot of the challenges were under dosing because everybody's trying to compare one to one to injectable insulin, and therefore one of underdosing patients, and therefore, they got equal outcomes didn't do any worse than injectable insulin per se. But could they have gotten better outcomes if we dosed improperly? Right? And I think that's, that's the state of we're now trying to generate to show that the kids buddy now be head to head, or if he knows him properly, what happens? Right, and that's we're really focused on right now.
Stacey Simms 26:01
Is there anything that you wanted to talk about that I haven't answered?
Mike Castagna 26:04
No. I mean, we're only available in the US, we're in the process of going to Europe. So I don't know if you have any. Yeah, we do. Though, so I know, we have patients on a name patient basis in Germany, and UK and Italy. So you know, their governments are actually important a president and pay for it. We're in the middle of filing for Australia. We were approved in Brazil, and we're going to India so so you'll see this more and more around the world. You have listeners in those markets. There's not gonna happen this year. And hopefully, the next year or the following year in some of these markets, we'll be looking at bringing it to more patients in those markets.
Stacey Simms 26:37
Well, and just got a big approval here in the United States for Medicare patients. Right.
Mike Castagna 26:42
Yeah. So that one, I, you know, we get a lot of questions on that one. And so you know, this market CGM patients were told you need to be injecting yourself, I think four times a day, we couldn't get your CGM. So then doctors were not getting patients Afrezza. And so we were able to ask CMS to change that, and they did to the year but rather haven't done they're not done. And so here we are a year later that that policy is now being updated. I want to thank CMS and all that you're helped make that happen. And I think it helps in people in CGN, because I understand that removes some of the other requirements to get CGM, even an injectable these patients so little mankind was the one who started that process. And then we're able to help a lot more people. So it's great. And we're trying to get Medicare $30 a month insulin. So we have Medicare listeners. And you know, we're trying to make sure we help get patients access that are on Medicare. I think that's important.
Stacey Simms 27:33
That doesn't stack up in terms of cost in the United States.
Mike Castagna 27:36
Yeah, I mean, you know, fortunately, the billion dollar debacle in this country is drug pricing, as we all know, and as a pharmacist, I know firsthand when people go through an LMS they're on how many co pays are on. And so we really have tried hard to make sure that no patients pay no more than $15. So we have copay card programs, we actually have a free drug programs, they really can't afford it, we'll give it to you for free. If you're going through the prior authorization process, we give it to you for free while you're going through that. So we all want payers and reimbursement to be the excuse of why a patient can't get access to our product, we think that people will do well on our product, we're willing to take that bet that they'll see good results. And if they see good results, the payers will usually pay for it. And it says you may or may not know that there's a monopoly in diabetes between two insulin players, and three payers, who are all working together to make sure there's no competition. You know, that's unfortunate, but they pay to make sure that patients have a difficult time getting Afrezza . And that's always one of my frustrations of competition or diseases. You know, 400 years, we've seen the precise the dispensing from 20 hours a while 95 and let's say miles, hundreds of dollars. You know, for me on the payer side, we want to make sure patients we try to bring it down to about $15 on commercial and Medicare, you know, they generally pay comparable to what they would and some Medicare plans a little bit higher I can you know, that's a hit or miss when you when you go to submit for reimbursement, but we try to do everything we can to make sure people will have access to our product
Stacey Simms 28:57
$15 for $15 for commercial patients, no, no, but what is it? What is it for? What do you get for $15? Is it a month? Is it a
Mike Castagna 29:05
my week? Yeah, whatever, whatever. You gave two boxes, three boxes, whatever is on that prescription for that month,
Stacey Simms 29:10
for the month. Okay, I didn't mean to interrupt you.
Mike Castagna 29:12
I don't think I know, I was gonna say I forgot we actually have a cash pay program. And people are paying cash for their insulin. And we do see several 1000 people a month paying cash for injectable insulin, we have influenced savings comm where it's $99 a month for frezza. And you know, can you a bigger box or more doses, you might pay 199 but we tried to make the cash price, you know, roughly $100 a month. If we if you had no insurance, for example.
Stacey Simms 29:37
I'm not sure you can answer this question. But I will ask it anyway, is the biggest challenge for you all the failure of exubera? Is it just people not knowing what this is? You know, as you move forward, you know, what is the big challenge to get more people to adopt us?
Mike Castagna 29:51
I mean, for me, the biggest challenge are the doctors. We created a program we basically gave it for free to patients for two years for 15 bucks. Like no no priority. Nothing, we just charge you $15. And that didn't change a lot of doctors from jumping on board. And doctors just don't know our data. And so they think this product doesn't have a lot of data behind it. And they don't know our data, they don't know. Like when I would ask a doctor, how fast from the time you inject your bolus, your pump to the time you look on a CGM, that your institute sugars are coming down, and I get in these endocrinologist, I'll get five minutes and mediate and 20 minutes an hour, the answers, I need 90 minutes, 220 minutes, that's the answer. And so they don't even know the pharmacokinetics and pharmacodynamics differences between injectable insulin inhaled, and then you have doctors, right, you know, calling some of these ultra acting drugs faster, we'll look at the package inserts, they're no faster than their old products. And there's a lot of misperceptions out there some of these newer launches of old tracking insulin, and to me they're, they're really not that much different than the predecessor and look at the data, you know, there's not a faster, there's not dramatically faster onset or offset or, you know, a one c lowering or weight gains on very much the same. So, no, I think it's just a matter of doctors trying to really understand the data.
Stacey Simms 31:02
Before I let you go, are there any plans in the future to change anything about the way it looks? or different colors? I mean, I know it sounds kind of silly, when you're just trying to get people to adopt the new technology, but from a user standpoint, and look, I know, you've heard all the jokes of my friends who use this will make you can't comment on designers. They don't say anything, they'll make comments like, you know, taking a hit or whatever, right? I mean, it's it's inhaling, it's this little thing that you're, you're inhaling, it looks a certain way. I'm curious if the cosmetics of it are anything that are on your radar, or needs to be improved even?
Mike Castagna 31:36
No, I mean, I think when you spend, you know, $3,000,000,000.20 years doing a new drug development or taking 100 year old product and reinventing it, you had to get that right in terms of device design and airflow dynamics and consistency. And those. And I think all that's really important because, you know, misperception that oh, my God, it's going to be less can be more variable than injectable insulin. And the data just doesn't support that statement. And so for us, we have one of the world's most unique installation platforms across the entire pharmaceutical industry, we deliver more power to the lung, the most technologies out there. So that's why you can get consistency, those two those, and you don't have a lot of variabilities, because our technology and our device is called a low velocity inhaler. And what that means is there's a resistor that helps slow the powders as they're coming out of the inhaler. So they get deep into the lungs. And that's why you get that nice absorption curves that we see. And we're most inhalers or high gloss inhalers. So it's just enough sucking air as hard as you can, and hoping you get you know, 20 30% of lung drug into your lungs, and mostly stuck in your teeth to device in the back of your throat. That's most dry powder inhaler technologies out there today. And so that's something unique to us and our technology and our device, they all work really well together, you couldn't just take our powder and put into another inhaler, and or just as well would not work. So yeah, we're pretty happy with the device I we are going to other diseases. So you know, we're we're going down to the FDA with our partner for an approval in October for pulmonary hypertension patients. And we have several other orphan lung areas we're going into to help more patients with lung disorders. So you know, I think that's important, like our, our technology, our inhaler, our platform is gonna be used in more and more patients over the next decade than just diabetes.
Stacey Simms 33:13
Well, that's what I was gonna ask is, if it works, so well, you know, will you partner with other medications? That's great to hear.
Mike Castagna 33:18
Yeah, you know, we're really busy, we probably have about 10 to 12 formulations of products working on this year and five marone products in the pipeline. And so it's it's a really good time of mankind, we're super excited to be here. And it was a turnaround, the company struggled for many, many years. And we're on our way to success. And I think, firstly, you'll be you'll be hearing more about it. So I know it's been a long time. And maybe you didn't talk to us yet. But hopefully you'll talk to us more and more as we continue to generate new data and more more patients start using it.
Stacey Simms 33:45
I'd love to, I'd love to, especially with the kids programs. And like I said, I've got a 16 year old who is very curious about this. And, you know, once once safe and effective. Once we get all that safety stuff in here. It's mom says, you know, I'll definitely I know, I would like to check it out. So I really appreciate you coming on and spending so much time with me and my listeners and explaining all this and we'll definitely talk again. Thanks, Mike.
You're listening to Diabetes Connections with Stacey Simms.
More information at Diabetes connections.com. Always on the episode homepage. I also have a transcription as well, sometimes those podcast players don't display the show notes and the links. So if you have any trouble, just go back to Diabetes connections.com. And I just want to say that I did reach out to have Mike or somebody from Afrezza on the show. And you heard him say, you know, it's been a while, um, you know, it just took a while to connect to the right person. Let's just say that, and I will have them back on because lots of good stuff is happening. As you heard.
I want to take a second and kind of explain Monomeric insulin and, you know, I'll be honest with you. The scientific points here are really not my strong suit. I'm a communications major, right. So I did what I always do, and I am People who know a lot more than I do to help me explain it. I went to the Facebook group Diabetes Connections as a group. And you know, I said, How do you explain monomeric insulin I know it's faster. And Tim Street, who is just wonderful and runs the diabettech.com page that's like diabetes tech diabetic, and I'll link that up as well. He provided this explanation, which really brought it home for me, and boy, I hope I'm pronouncing everything correctly.
So Tim wrote, insulin naturally links its chains together to form stable molecules. Typically it connects two together and then links three of those two chains together. Additionally, to create six This is highly stable and described as hexameric. In order to use these chains, you have to break the molecules apart to single chains, which are monomers. Typically fast acting insulins are stored as dimers, two monomers connected, which are easier to split, then hexamers. by storing the insulin as a single chain, a monomer, the body doesn't have to break the chains to instantly use the insulin molecule it receives. And that is why Afreeza wraps the monomeric form in the capsules, to make it ultra fast.
Thank you, Tim, that actually made a lot of sense. I gotta tell you, we have the smartest people and the kindest people in this Facebook group. If you're not there yet, and you want to join, come on in, I highly recommend it. You don't have to be a Tim Street. You don't have to be able to explain these concepts. You do have to be nice. And you do have to not post a lot of drama. I'm very tough on my diabetes groups. I run two of them. They're very nice and friendly places for a reason. But Tim, seriously, thank you so much. That was a great explanation. And I really appreciate it.
Diabetes Connections is brought to you by Dexcom. If you're a veteran, the Dexcom g six continuous glucose monitoring system is now available at VA pharmacies in the United States. Qualified veterans with type one and type two diabetes may be covered. Picking up your Dexcom supplies at the pharmacy may save you a lot of time to connect with your doctor for more info Dexcom even has a discussion guide you can bring with you get that guide and find out more about eligibility. It's all@dexcom.com backslash veterans, and all the information is always at Diabetes connections.com.
Before I let you go, just a quick note about back to school, I have never done less. I packed up a bag for Benny to bring to the nurse. He brings his daily supplies with him every day in his backpack. But of course, like most people, our nurse has backup supplies for him. So I put those together. He brought them in along with our plan or orders, you know from our endo. And that was it. I haven't set foot in the building. I'm not sure when I will go in or if I will go in probably when you forget something or they run out there. But I've never done less work. You know, I did a lot of work over the years to go to school and meet with people and he's got it. So not much to report. It feels very strange. All right.
Please join me this Wednesday when we have our in the news live on Facebook every Wednesday at 430 and then we turn that into a podcast episode. I love doing that. It's been a lot of fun. I hope you're enjoying it. Give me your news tips. If you've got any from this week, just email me Stacey at Diabetes connections.com thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then be kind to yourself.
Benny 38:27
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
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
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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.
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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.
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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/
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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.
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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
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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/
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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
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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
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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…
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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.
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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.
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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!
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.
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
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[vc_row][vc_column][templatera id="11880"][/vc_column][/vc_row]
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:
Benny & Stacey talk untethered and more on their way to the endo
Talking about Control IQ & addressing kids' questions about diabetes
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.
We talk about the VIVI cap which helped keep Benny's insulin cool. Check out VIVI-CAP www.tempramed.com – use promo code DIACON21 to save 10% off your purchase! (promo code valid through 8/31/2021). We are not compensated for use of this promo code, it's just a nice discount for listeners. They did send us the product for free.
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!
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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?
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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