Big news for Bigfoot Biomedical as the US FDA approves their insulin pen cap system called Unity – which also includes a CGM and an app. CEO Jeffrey Brewer explains what Unity is all about, gives us an update on Bigfoot’s pump system and opens up about his family’s story – his son was diagnosed almost 20 years ago.
Plus, in Stacey's first in-person diabetes meetup since COVID, she observed something very interesting about the newer families.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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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.
Stacey Simms 0:29
This week, big news from Bigfoot - FDA approval for their insulin pen cap system called Unity, which also includes a CGM and an app. CEO Jeffrey Brewer says their bundle approach is a bit like Apple’s
Jeffrey Brewer 0:42
Apple takes a bunch of different pieces, some of which they licensed and some of which they make and integrates them into the most usable package that actually is going to be accessible to the most people. That's the way we think about it as well.
Stacey Simms 0:56
Brewer shares what Unity is all about gives us an update on Bigfoot’s pump system and opens up about his family story. His son was diagnosed almost 20 years ago,
plus my first in person diabetes meetup since COVID, where I got good news beyond just seeing my people. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. And when I started Diabetes Connections in the summer of 2015 this week's guest Jeffrey Brewer was my second guest, it is hard to describe what the diabetes technology situation was six years ago. If you were around then you probably remember especially this podcast audience, you know, I tried to talk about it, as I mentioned in the teaser, had a meetup last week with some local parents, which was fantastic. And I'll tell you more about that later. And a mom of a child diagnosed in January of this year asked me what DIY was all about. she'd heard about loop he heard about do it yourself. She wasn't quite sure what it was all about. So that was a long and winding conversation.
If you are brand new, and you want to learn more, I recommend searching out the we are not waiting episodes of this podcast. And you can easily search those up at Diabetes connections.com. There's a search box on the upper right. It's a very robust search of our almost 400 episodes now. And you can search we are not waiting as all one word. I've put that in all of those kind of DIY open APS CGM in the cloud. You know all of those types of episodes.
I know that six years ago, this pen cap system is not the Bigfoot FDA approval many of us thought would come through First, if you've been following this story for a while Bigfoot was founded in 2014. It was under a different name. It got the Bigfoot name in 2015. But it was founded by a small group of dads of children with type 1 diabetes, including Bryan Mazlish, who got that nickname Bigfoot via reporter looking for the elusive person Bryan who had developed a do it yourself closed loop which his wife and son with type one were using, and the initial headlines for Bigfoot, were all about bringing that closed loop system to market you can go back and see their initial funding press releases, which say things like you know, “the funding will support final development activities for Bigfoot’s Smart loop, automated insulin delivery service, the world's first Internet of Things medical device system delivered as a monthly service.”
Bigfoot Unity, which is what we're talking about today is going to launch as that monthly service. It's such a great idea to cut down on the complexity, it's going to help so many people on multiple daily injections, but I know that this podcast audience leans very much into the pump closed loop give me all the tech news group. And I think it's important to acknowledge that that said, My guest is Bigfoot CEO Jeffrey Brewer. His son was diagnosed with type one in 2002 and as the former CEO of JDRF. Brewer led the artificial pancreas project there. In life before diabetes, Brewer founded and led early.com startups including city search and goto.com.
We will find out all about Bigfoot Unity in just a moment but first Diabetes Connections is brought to you by Gvoke Hypopen and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out there are a lot of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar. Gvoke Hypopen is the first auto injector to treat very low blood sugar fever. Gvoke Hypopen is pre mixed and ready to go with no visible needle. before Gvoke, people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke Glucagon dot com slash risk.
Jeffrey, thank you so much for joining me, I really appreciate it.
Jeffrey Brewer 5:05
Thanks for having me. Glad to be here.
Stacey Simms 5:07
So I looked back at my notes, you were my second guest on Diabetes Connections back in the summer of 2015, talking about the big plans for Bigfoot and holistic systems, and then lots of things that you said at the time you couldn't really talk too much about. And now here we are. So first of all, thanks for being my guest way back when when, you know, probably have three people listening, I really appreciate that.
Jeffrey Brewer 5:29
Well, thank you, and thanks for sticking with us maybe took us a little bit longer than I had hoped. But we're finally here to be able to offer something to people with diabetes, that we hope it's going to improve life and make it a little easier.
Stacey Simms 5:43
Definitely. Well, let's talk about that. So we're talking about Bigfoot Unity, would you mind kind of going through who it's for what it does, this is a system that is going to help people who are on multiple daily injections. So what is big for Unity?
Jeffrey Brewer 5:57
Yeah, so as you know, had Bigfoot developing a range of solutions to help people whose lives are dependent upon insulin to live safely and, and hopefully better lives. We are in this journey, focusing first on multiple daily injections, basically, intensive insulin therapy, once a day, have a basal insulin, and then given shots at mealtimes, or for corrections of rapid acting insulin, that particular therapy, which about 3 million people in the United States today do on a daily basis, about half people with type two diabetes, about half people with type one diabetes, but it's really the same therapy, we have developed a system that we believe solves a lot of the problems that therapy has, when it comes to the ability of people to determine the right dose for themselves on an ongoing basis, and also for health care providers to support them in doing so over a long period of time. I
Stacey Simms 6:53
totally understand because years ago, my son wanted to take an insulin pump break, he has used an insulin pump, since he was two, really six months after diagnosis, we got him on a pump. And we were so frustrated. Because not only did we have to do all the math manually that the insulin pump had done, there wasn't. And this was really before, there were lots of apps and things, there was no way to do all the stuff that the pump does in terms of insulin on board, and that kind of thing. So I assume that those are just a few of the features that Unity will provide
Jeffrey Brewer 7:23
some of the things that a pump does BigfootUnity will help to support your right that for people taking shots, it's mostly a glucometer, a piece of paper with some instructions and a couple of insulin pens. There isn't a lot of technology involved in those people's lives right now. And what we've done is develop a package of technologies that includes some devices, and some software that is knitted together for ease of use, to make life convenient for the person to first of all, be prescribed the therapy to be trained how to use the therapy easily and safely, and then to over time be supported by a healthcare provider who has the responsibility of supporting many of these patients, we are bringing technology to a population of people who I think have been largely overlooked, because most of the innovations have been focused on pumps. And that's really been focused on type one and also focused on very highly engaged people with diabetes that frankly, had to do a lot more in order to support the therapy and seen by doctors who are very excited about the technology. But not everybody sees a clinician like that. And not everybody wants to put everything into their insulin therapy that maybe a pump would require.
Stacey Simms 8:42
So take me through a little bit of it if you could, when I looked at it, I was kind of making notes that I wrote white cap black cap. So the white cap is for the fast acting and that gives you a dose, like a pump would say here's the suggested dose.
Jeffrey Brewer 8:56
Sure Bigfoot Unity is a bunch of different things together at the centerpiece of the system is these taps that are going to be for the particular insulin that a person is prescribed, whether it is an insulin made by Novo Nordisk or Sanofi or Eli Lilly, we have caps that fit all the different disposable insulin pens for both the basal insulin and the rapid acting insulin. First of all, you get these caps that fit the insulin that you've been prescribed. You also get a couple freestyle Li braise, you get a blood glucose meter that talks to the caps as well. You get in this first time experience kit, everything down to the pen needles and the alcohol swabs that are going to be used for parasite before you put on a sensor, literally everything that you need in order to initiate multiple daily injection therapy with the exception of the Insulet itself. It's all in this box. So this box comes to a person with diabetes in their home. We train them to use the system through a digital interface that we've developed support. onboarding to our system but also for people who are cgmp may never have bought a CGM before will literally through a zoom interface, walk them through the first experience with CGM, and then train them on the whole system. And the centerpiece of the system, as I said, as these caps, which basically do a simple thing they keep track of when you last gave yourself insulin. And they do calculations that are necessary in order to recommend how much to take based on your doctor's direction, very simply on the blackcap, which is focused on the basal insulin, you have one button, and you can only press the button and cycle through screens.
So you press the button. first screen says this is when you last took the dose. So it could have been say 23 hours ago, and it's time to take another dose, you press the button again, and it's going to tell you how much you should take. And that's what you were prescribed by your healthcare provider. And what can be updated in the cloud, by your healthcare provider. Rapid acting cap, the white cap is got some additional functionality, but still works the same way. It's got a screen on it, and then you press the button, the first screen is going to have when you last gave a shot, which is particularly important for stacking insulin as you refer to insulin on board. This is one of the big challenges that people who are on shots have is that they don't have a record of when they last took the shot. And so actually making sure that they don't treat the same high glucose reading too quickly, and then end up with too much insulin and end up low. This is something that we help with by actually keeping a person from stacking insulin. So you press this button, it's going to tell you when the last took a dose, if within three hours, you had taken a dose previously, it's going to lock out a correction. And therefore you're not going to make that mistake. This cap also interfaces directly with the freestyle library to or a blood glucose meter, and basically takes that data and directly translates it into a correction dose if you are taking your correction based on again what your healthcare provider had prescribed. So whether it's a correction factor or a sliding scale that was written down on a piece of paper, you don't have to remember or do any calculations, it basically just takes the number from the libri and turns it into here's how much insulin I should take. And if I had previously taken insulin that keeps me from over insulinizing and stacking insulin
Stacey Simms 12:16
over insulinizing? Is that an actual word?
Jeffrey Brewer 12:22
Yeah, I think I heard that from one of the researchers one time, so
Stacey Simms 12:25
we're claiming it if it's not, it's a rage bolus or it’s over-insulinizing
Unknown Speaker 12:29
There you go.
Stacey Simms 12:30
I didn't mean to interrupt you, sorry.
Jeffrey Brewer 12:32
No, no worries, the next step, after you take a correction, maybe you're going to have a meal. And having recommendation for how to dose from mealtime. It actually turns out that small, medium and large is a format that a lot of people are able to understand and work with in terms of how to take carbohydrate content and actually correlate that with an insulin dose. It's actually the minority of people, even in type one, but certainly with type two that carb counts. And so thinking about this in a different way, and a simpler way, where you have maybe small medium and large buckets, and a corresponding number of units for insulin that shows up right on the pen cap. If you want to add the two together, you are going to click the button again. And then it's going to basically add a correction to whatever the meal bolus would be, you're going to pick that value that you're choosing as a patient, because we're not deciding for you, we're just telling you, here's what your doctor would recommend based on all the calculations that you usually would do, if you had to do them. If your doctor were sitting there with you, this is what he or she would recommend you do. But if you know more, because for instance, you know, you're going to be exercising vigorously later, and you want to protect against hyperglycemia a person might decide to take a year or two less. But basically we're going to get them all the information that we can take it and make it actionable for them take as many steps out as we can to just get them to the answer they want. Because I don't actually think people want to know what their blood sugar is. They want to know, what do I What should I do? How much insulin Should I take. And so every step we can remove, and every thing we can take out of this equation to make it easier for people to stay healthy and take the right amount of insulin and then forget about diabetes for another four hours until another meal. That's what we're trying to do. And we're trying to do that for people who take shots, which is most of the world in terms of multiple daily injection therapy is the preponderant therapy for intensive insulin usage.
Stacey Simms 14:28
I appreciate you going through so granularly, I have learned that my listeners really like the deep dive anytime there is something new. So thanks for walking us through that. And you've mentioned the CGM. Let's talk about this. This is all integrated with the Libra when people use the Libra does it alert?
Right back to Jeffrey answering my question but first Diabetes Connections is brought to you by Dario health and one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my dario.com forward slash diabetes dash connections. Now back to Jeffrey Brewer answering my question about using the abbot libre here, does it alert an alarm?
Jeffrey Brewer 15:40
Very good question. So the way the library works is it gives data in two different manners. One is you take the pen cap and you swipe it over the library. And it gives you an on demand reading for what your glucose is at that particular moment. And that's the value that is used in order to calculate any corrections. But there's another way that libri is communicating, which is directly through Bluetooth to the smartphone. Because we have an app on the smartphone. And that's monitoring. For instance, for hypoglycemia, you have a couple different ways the library is working in order to support a person with diabetes, it's either directly on demand to make the calculation on the pen cap or go into the phone for monitoring for hyperglycemia. These are particular capabilities of the library to
Stacey Simms 16:27
his delivery that is in big for Unity. Are there any different features? Or is it the same one that people can buy separately?
Jeffrey Brewer 16:34
Well, it's the same libri puck. So the sensor itself, the part that you wear on your body, it's the exact same one that gets prescribed and fulfilled at the pharmacy or wherever else a person gets their lead rays. The difference is that we're not using the reader that avid makes, or the app that avid will have on the phone, the libri in our context is talking directly to our pen caps and to the app on the phone. So it's fully integrated into the system. This is an amazing thing that avid has given us, which is the ability to make it very, very simple for the end user such that you don't have to apps you have to worry about all the training is comprehensively designed such that I learned to use the library and the context Bigfoot system, one training one app, one company that's gonna support the whole system, Bigfoot, and then all the data that gets captured, whether we're talking about insulin data or glucose data, and then made available to clinicians in a unified interface to support them in adjusting the therapy over time.
Stacey Simms 17:38
Well, this may be a really dumb question. I know that the Libra you scan with the phone, when it's separate from Bigfoot in Bigfoot Unity, do you scan with the pen? Or is it just automatic,
Jeffrey Brewer 17:48
it's with the pen, you scan. That's actually the only way you can get right now what's my glucose reading from the CGM is through that NFC interface on the library puck. And one of the key design elements that we felt very strongly about is that you don't have to open up an app on a phone, in order to give yourself a shot. Literally, you're just carrying that pen which you would have with you for meals during the day, it already has the pen cap on it. So you don't carry another device and you're wearing the Libra on the back of your arm, all you have to do is wear the Libra Ray, and then scan that Libra with the pen cap, then it tells you what to do. And no opening an app on the phone, no unlocking the phone, selecting an app opening and navigating through pages, that adds too many steps. And it's frankly, peep something people don't want to do. So we tried to make it as close to what they're doing today, which is you've already got a pen that you're carrying around, we're not adding another device, you don't have to add any additional steps, all you got to do is wear the LIBOR rate and we take that data and then make advice as to what to do.
Stacey Simms 18:54
You know, one of the issues with pens is that they'll switch you insulin brands. So you know the insurance when your will cover human log the next year it wants you to take novolog and the pens aren't the pens different the caps fit and the different pens geoffry.
Jeffrey Brewer 19:08
The pens are different between the different manufacturers. And then some cases from the same manufacturer, you have different designs, different diameters and geometries and clearance for the needles. What we've done is besides designing different pen caps for all the different insulins, we have basically supported this as a service offering. So when you're using Bigfoot, if you didn't buy a pen cap, you are a customer for the entire offering. And if you get switched by your insurance company from humulus, novolog or back, we're just going to send you the new pen cap that fits the insulin that you're currently prescribed, which is we think one of the big challenges that people have and we've heard and we wanted to make sure that that was an easy transition for people.
Stacey Simms 19:54
That's great. And you've already mentioned the way it's packaged, but I'd like to just talk about that. Little bit more I remember. And it was either when we first talked in 2015, or you know, some point very early on that you all were adamant that this was not going to be piecemeal. And you were also going to make it easier for people to purchase things all together. So this is, this is a terrible way to describe it every in my head, I sort of think of those boxes, the subscription boxes, people get right with my kids, it was like, you'd get little fun comic book stuff in them, right, or you'd get a subscription box of exciting bath luxury items. This is obviously not that this is a box with everything in it, right, everything comes together.
Jeffrey Brewer 20:34
That's right, when you first initiate therapy, you don't have to go and get a prescription filled, really braise a prescription field for a blood glucose monitor for test strips for lancets. For pen needles, basically, it's all there in the box. And it's trained and set up in a unified fashion. That frankly, just makes it easier to learn. And it makes it more convenient. And we thought that's an important part of the customer experience. There's a lot of blaming, that takes place of the patient in the world that says, Well, people just aren't working hard enough. They're not doing the things that their clinician told them to do. If they were everything would be better, and diabetes wouldn't be a problem. And frankly, we just don't agree with that. We think that it's too complicated, it's too hard. And that it should be easier. So one of the things that needs to be easier is all the different supplies and getting those and making sure you have the right supply. Having access to the tools is something that needs to take place in order for you to be able to successfully use the therapy, we figure if we make that easier if we make it easier to remember things or you don't even have to remember things because we remind you or we descend them to you without you having to remember all that kind of stuff, I think really adds up to a better experience easier and more convenient use of the system, we firmly believe it's going to end up in better results. Because it's just people are going to do things that are more convenient and easier for them to do. So we make it as easy as possible.
Stacey Simms 22:03
any issues getting insurance and Medicare coverage when it's all bundled like this. I mean, I'm asking is did Bigfoot have any issues getting it? And is it covered for people now?
Jeffrey Brewer 22:13
Why Yeah, there's a lot of innovation that we're having to undertake in order to be able to deliver this to people. One of the aspects of innovation is that we're working through clinics, or endocrinology practices. And this is how we deliver the solution, the clinician will prescribe and then bill for not only the system, but the services of the clinician to use the system and support the system for the person with diabetes. And then when bill comes in, it comes from the clinician. So in order to make this simple, so that there aren't all these different prescriptions. And there aren't all these different places where you have to get all the different pieces, we're working through the clinician. And in this case, there are already codes that are available called remote physiologic monitoring codes that support the treatment of chronic disease and tools in order to support better treatment in chronic disease. And so we're providing these tools to the clinician, and then the clinician basically delivers them through to the patient. And the billing relationship is between the patient and the clinician. All of it gets simplified and makes everybody's life easier. What we're doing is covered by Medicare and private payers more broadly, because we didn't go and get a code for Bigfoot, what we did get is a plan to go and use codes that are already there that clinicians can access in order to reimburse both for what we're providing, and for the services that they have in order to support the effective usage of the system
Stacey Simms 23:46
looking forward, because of course, we can never just let something come out, we always have to see what's next. You know, we talked a lot about interoperability is Unity, going to integrate with different cgms or different systems down the road is that in the plans,
Jeffrey Brewer 24:00
not in the immediate plan, what we did is we said, we're going to pick what we think is the best CGM for what we're trying to do, which is simple, easy, cost effective and very scalable across a large population. And the library has some very unique capabilities that that we feel very much support what we're trying to accomplish. And so we did a deep partnership with avid, as I said, they've given us the ability to integrate their sensor into our system in a way that other systems are not integrated closed loop systems. Today, you have a company that sells you a sensor, you have a company that sells you a pump, they have different apps on the phone that are going to govern, you know their respective products, they're going to be uploaded to clouds that sometimes require clinicians to look into different places to see the full picture for data. We're doing something much simpler. Describe what we're doing is more like what Apple does. Apple takes a bunch of different pieces, some of which they licensed and some of which they may integrates them into the most usable package that actually is going to be accessible to the most people. That's the way we think about it as well. There are other sensors out there and great options for other sensors. We're not trying to say you have to switch to us if you're happy with your other solution. We're trying to go after a population of people who literally don't have any solutions today and are feeling pretty ill served. We think that with all the people out there that are still to use CGM are still to benefit from CGM and the kind of tools we put around CGM. We don't see ourselves as competing with others. We're just trying to get the goodness that we believe we've created out to people who who need it,
Stacey Simms 25:39
I got a question from a listener I meant to ask we were talking about scanning depends. And that was, if a person can still use the the libri, to reader and the librelink app to scan the sensor. Or once you do this, if it is only linked with Bigfoot system?
Jeffrey Brewer 25:53
Well, in order to get the benefit of the system, you need to use the pen caps, because that's where the data is captured. That's where the recommendations get made. And it works best in the context of the Bigfoot system.
Stacey Simms 26:05
So you can't you can't link it to two different things. In other words, you couldn't use the reader and the pen.
Jeffrey Brewer 26:10
Not at the same time, you could use the library separately with a library reader and a librelink. app, but not at the same time.
Stacey Simms 26:20
I'd love to get an update Jeffrey, if you could on what I believe is called Bigfoot autonomy, which was the pump system that we did first talk about all those years ago? Can I ask you what the plan is for that, or what you could share with us about it, it is called Bigfoot autonomy, right?
Jeffrey Brewer 26:35
That is the name that we have picked for it. Yes, autonomy and Unity Unity use for the shots and autonomy is for the pumps, we have, as you know, a pump ourselves, we have developed and done clinical work for algorithms that we have utilized for closed loop insulin delivery. And we've also developed the full package around how to deliver it as a single thing, using a libri. In a very parallel fashion to what we've done with a foot Unity, we had to focus on one product in order to launch the company and to establish ourselves. So we picked this path because we think it gives us the opportUnity to reach the most people most quickly that frankly, don't have other options available to them. And we think we're going to be able to establish a reputation in the marketplace. In the future Bigfoot autonomy is going to complement Bigfoot Unity and present another option for how people can have insulin therapy. That is something we're committed to down the road.
Stacey Simms 27:34
So the people that were very enthusiastic, there's this this whole commUnity that was you know, the DIY commUnity and the we are not waiting commUnity, they should not look at Unity and say, well, Bigfoot has stopped with the pump, right? They shouldn't think that this is not going to go forward. It's not still in the plan.
Jeffrey Brewer 27:51
Well, the plan is always and will remain that we're offering choice and selection of different opportunities for people that have different needs. Just as Medtronic today, in acquiring the companion in pen now realizes it's not about pumps or pen, it's about both, we've been saying the same thing for quite a while, we're just starting with the pens, and then expanding to the pumps, versus everybody else is now interested in pens and started in pumps, it's really the same thing. It's a different way of serving a particular part of the population that has different needs, pumps are great. And they can deliver a lot of value and a lot of quality of life. However, they're not going to be right for everybody. And there's going to be a lot larger population of people who will still take shots for the foreseeable future, especially globally. And so it's not a matter of either or it's both in our minds,
Stacey Simms 28:43
if your son is living with type one for almost 20 years now. And of course, I think most people got familiar with your name when you were at jdrf really pushing the artificial pancreas program. I wonder if you could just take a second to give us some perspective, because I don't know about you. But my son was diagnosed in 2006. And it almost seemed like for the first eight years, maybe even 10 years, there just didn't seem to be that innovation on the commercial side of things. And now, I feel like I know it's it's not there's no cure. I know it's we're not there yet. But I do feel like the technology is finally working hard. You know, we're doing things for my son. And it's not just pump technology, as you said it's pen technology. And I feel like at least he can do a little less work.
Jeffrey Brewer 29:25
I feel the same way. There's been a tremendous amount of progress from 2002 when my son was diagnosed in 2012. There wasn't much of any progress. It has been accelerating in recent years. And I give a lot of credit to jdrf and the work that the volunteers supporting jdrf did to advocate to the executive branch to the legislative branch and then directly to the FDA, we were able to establish a very strong platform for collaboration and the way the FDA has prioritized the innovation in diabetes. enabled it with some clear rules of the road. I believe that's what made it all possible. There has been development of technologies that weren't mature before. But if they didn't have a path through to the marketplace, through the FDA process that worked, we wouldn't benefit from all these things. So it has been a journey. And I think it's been, you know, development of technology. It's been developed in the regulatory practices. It's been greater familiarity and openness amongst clinicians, and also the payers who see value and these tools for patients. So a lot of things that had to change, healthcare is much more complicated and difficult to work in than what I previously did in my high tech career. But it's much more rewarding, because I think it's now having a big benefit and a lot of people and we're happy to join the party, as Bigfootbiomedical.
Unknown Speaker 30:47
Do you mind if I ask how your son's doing?
Jeffrey Brewer 30:48
Yeah, he's actually doing very well with his diabetes, I will tell you that between the ages of like 15 and 22, it was kind of rough. It was a very similar story that I heard from many parents when I was a CEO of jdrf. It's a really challenging condition to live with adolescents and young adults. But he sort of found his way through that, and now has refocused on taking care of himself. And the tools are better now, to enable him to do that. So I think that it's gone hand in hand, his maturation and the development of these tools. And you know, I think he's in a good place. And hopefully, we can make it better over time. You know, it's
Stacey Simms 31:27
funny, I'm not quite sure this is gonna come out appropriately. So I'll try to be careful. But it's kind of nice to free in a way to know that even the head of jdrf. And even the guy at Bigfoot has a kid who was a teen, and struggled. And I know that sounds weird. I don't wish anybody to struggle. Like I wish all the kids went through this, and we're fine. And everybody was the poster child. But I appreciate you sharing that.
Jeffrey Brewer 31:50
It's important because I don't think that people talk about it enough. How hard it is for families, how hard it is for the kids, and how young adults, their brains are just not meant to cope with a responsibility like this. It's just not right. It's not something that they're ready for. And, you know, so nobody should be surprised that it's very hard. And it certainly journey. I think it'd be better if people understood that from the beginning, you know, because some people yeah, you're right, they think it's just my kid that's having this trouble. But it's not, it's that this is really, really hard for any family. And it frankly, is the rare family, where you have just a completely well adjusted and easygoing kid with type 1 diabetes. That's the rarity, not the norm. We're a company that stems from the patient experience, you know, my knee through my son, obviously, it's not the same thing as having it. But you know, having a child that grew up with it, a lot of people at Bigfoot have insulin requiring diabetes and know what it's like to live with this drug. I think it's given us a really great perspective on some of the softer aspects of the experience have been missed by some of the medical device companies, things about making it easier and less stressful and just more convenient. Because when you got to do something every day, multiple times a day for the rest of your life, it's just a different kind of thing. And even small benefits to simplicity can have a huge impact and adding up to much less burden, emotionally or intellectually. And I think that all adds up to better lives. We can't point to any one thing about Bigfoot Unity and say, this is the thing that really makes the difference. It's really a bunch of different things that are really holistically designed to as a system, the sustainable and usable on a daily basis. And I think that's really the future of chronic disease and, and we're glad to be able to help tell that story.
Stacey Simms 33:45
Well, thanks for spending so much time with me. I really appreciate you going through it. And I'm sure we will talk again soon. Jeffrey, thanks so much for being with me.
Unknown Speaker 33:57
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 34:03
Lots more information about Bigfoot. I will link it up in the show notes at Diabetes connections.com. I have been hearing some weird things about Apple podcasts player recently and some of the other apps that feed off of apple. If you're having any trouble getting links, or even listening to the show. Everything you need is a Diabetes connections.com transcripts of every show. And always please get in touch with me I can usually help you find what you need. Because these are pretty information, dense episodes. And if you prefer to read, I want to make sure you get the info. And if the app isn't helping you then we can help you in a moment.
Something really amazing about my recent diabetes, parenting meetup, I met some new families and it was really unusual their experience and what they're doing for the rest of us. It's complicated, but I'll tell you in just a minute. First Diabetes Connections is brought to you by Dexcom. And when we first started with Dexcom back in December of 2013, the share and follow ups weren't not an option. They hadn't come out with Technology yet. So trust me when I say using the share and follow apps makes a big difference. I think it's really important to talk to the person you're following or sharing with. Even if you're following your young child, I'm telling you, these are great conversations to have, you know, at what number will you text? How long will you wait to call that sort of thing. That way the whole system give everyone real peace of mind, I'll tell you what I absolutely love about Dexcom share. And that is helping Benny with any blood sugar issues using the data from the whole day and night. And not just one moment, internet connectivity is required to access separate Dexcom follow up to learn more, go to Diabetes connections.com and click on the Dexcom logo.
Okay, it was jumping out of my skin last week, because I had my first diabetes parent meetup since COVID. I think the last one might have been January or February of 2020. Many of you know I run a very large Facebook group for parents of children with type one in the Charlotte area, I think we have almost 1000 people now when we were starting to pull from all over the state because I have come to find out it's a pretty unique group. If you have a local group that you run, or you're part of what makes it unique is mine is based on meeting in person, I try to really stress and set up you know nothing official, I'm not with any organization, I just say hey, let's meet for coffee here, I stress the idea of let's get together in person, let's get the kids to meet let's get the parents to meet. And it can be kind of hard because not everybody I have found is as I don't know if enthusiastic is the right way to put it or pushy or not shy, maybe it's just I'm not afraid of rejection. If I set up a coffee and I invite you know, the whole 1000 people group, and five people show up or one person shows up, I'm still really happy. And I've come to find out that not everyone feels that way. So don't be shy. Just put your stuff out there, get people to come and meet up with you. It will change your life. It really helps me 14 years into it, I think more than anybody else who comes to these things.
So I set one up, we only had two people come I'm telling you these things are still amazing. But they were both newer diagnosed families. One had a nine year old daughter diagnosed January of 2021, just this past year, and the other had a 16 year old boy who was diagnosed last summer. And it turns out and I knew this before we met we the kids have some mutual friends. And they're both wrestlers. So Benny knew this other kid as well. But what was amazing to me is that both of these families were already enrolled in clinical trials. And they had been presented with this option. So early on. Now we do not live in an area where clinical trials are present. I mean, I've talked about this on the show before it's we've never been able to get in one. We live in Charlotte, North Carolina, most of North Carolina trials and tests and things are in the Raleigh area over by the Research Triangle, or they're in Virginia, at UVA, or Florida. And that's really the closest to us. So that's where these two families both went for separate trials, both at University of Florida health both I believe at trial net, I may have the exact place but both with Dr. Michael Haller, who we've talked to several times before on this show, one of the kids that the 16 year old is in the Teplizumab trial, the other is in the ATG trial. I'm not going to go into detail on both of these, we've actually talked to Dr. Haller about both of them on the show before. So I will link that up in the show notes as well.
But I'll tell you what the ATG trials you've just started. So it's a little too early to tell anything. And of course, this is just with one person. So we should be careful about drawing conclusions. But the 16 year old wrestler, holy cow, so he was diagnosed last year, it's almost a year I believe in In fact, when this episode comes out, it might just be a year. And this is a 16 year old kid. So a teenager who uses probably a lot of insulin, right big kid healthy kid. And I want to say the dad told me that his daily basil is four units. And they're struggling using a pump because he gets such low doses of insulin. They're trying to figure out what to do. Now, who knows, because as I said, it's early on, but it seems to be the thinking that the diploma has really helped make this first year of diabetes, very different than what most 15 or 16 year old kids go through in their first year of diabetes. I'm going to talk to the family. I'll probably circle back around with Dr. Haller again. Because I think that their experience and honestly, it has not been an easy experience. This isn't you know, you go down to Florida, you take a pill you come home, it's a very intense, but brief experience, but they do go I believe, every six months. So I'll tell you more about that as we get there.
But I really wanted to bring up with how amazing that these newer families are helping in this way. Obviously they want to help their own children, but they also understand that this is helping the greater commUnity. These are opportunities that did not exist. 14 years ago, when Benny was diagnosed that did not exist possibly, you know, 10 years ago, we have to pull him up in front of the FDA right now. This is really interesting to me, and I know it is to us. You're listening if you're listening this far into the show, certainly, but man and I know I also live in a more affluent area people have more access to health care and to doctors who know about this stuff. But Wow, I was surprised so happily, so To hear that and and to see that their entry into the diabetes community was also an entry into studies that will help everybody you know whether this stuff works or not, it all helps. So I really appreciate it.
Okay, before I let you go update on events, my next event is not in person, we're still on zoom for a lot of us but getting in person for more, which is so exciting. On June 5, I'll be speaking at Camp Nejeda. They have a great event for adults with type one, I will link this up in the show notes. And in the Diabetes Connections Facebook group, I'm talking about telling your story and advocacy. So this is more about how to get the media to listen when you want to talk and also maybe just about blogging and speaking Yeah, blogging still Sure why not in podcasting, and tik tok and Instagram, but talking about your story, and advocacy. That's what I'm going to be talking about there. If you're listening in the Charlotte area, we are doing another D parent meetup. That's This Week. If you're listening as the episode first goes live, it'll be Thursday evening. So drop me an email or hit me up on social and I'll give you all the details. And of course, every Wednesday, Diabetes Connections in the news, join me 4:30pm Eastern Time live on Facebook for a very brief five, six minute newscast about what's going on in the diabetes world, all types of diabetes, and that's replayed on social through the rest of the week. And the response to that has been great. So I am going to keep doing it. I'm having a lot of fun with it. All right. Thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Dr. Stephen Ponder coined the term "Sugar Surfing" in 2013 to describe a real-time, dynamic system of managing diabetes. In this "Classic" episode we take a deep dive into what Sugar Surfing is all about and get Dr. Ponder's perspective on everything from parenting teens with diabetes to how he feels after 50+ years of living with T1D himself.
Dr. Ponder is the medical director at Texas Lions Diabetes camp where he’s volunteered for almost 40 years and in 2018 he was named Diabetes Educator of the Year
It’s hard to believe now with CGMs and closed loop systems, but the thinking you’ll hear Dr. Ponder talk about was pretty revolutionary in the early 2000s. This interview is less than a year after he published his book.
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Episode transcription below
Stacey Simms 0:00
Diabetes Connections is brought to you by Inside the breakthrough a new history of science podcast full of did you know stuff.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:17
Welcome to a classic episode of the show. I will be so happy to have you along we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, and this time around, I'm revisiting my first interview with Sugar Surfing Dr. Steven Ponder. Dr. Ponder has lived with type one for more than 50 years. He is a pediatric endocrinologist and a certified diabetes educator. Sugar Surfing is about real time management of diabetes. Dr. Ponder coined the term in 2013. But it was a long time coming, a lot of research, a lot of work.
It's hard to believe now with continuous glucose monitors and closed loop systems. But the thinking that you're going to hear Dr. Ponder talk about was pretty revolutionary in the early and mid 2000s. This interview comes less than a year after he published his book sugar surfing and by the way that is still free for newly diagnosed people, newly diagnosed families. And I will link up more information about how you can get that in the show notes over at Diabetes connections.com.
So what is Dr. Ponder up to these days? Well, he has become a frequent and welcome guest on this show. I last spoke to him for our New Year's Day episode when health care providers were getting the COVID vaccine that was such a joyful show. I loved being able to talk to them some of the first people in the country to get the COVID vaccines and he was one of them. Dr. Ponder is the medical director at Texas lions diabetes camp, where he has volunteered for almost 40 years. And in 2018 he was named the National Diabetes Educator of the Year he also founded a free medical clinic for children all children, not just those with diabetes, our original sugar surfing interview in just a moment.
But first, this episode of Diabetes Connections is supported by inside the breakthrough surprising stories from the history of science. Dan Riskin, digs deep and entertains as he connects those old stories to what modern day medical researchers are facing. As you know, 2021 is the 100 year anniversary of the discovery of insulin that is arguably the biggest scientific discovery in Canadian history. This series examines that moment and many others through the lens of Canadian researchers trying to find what's next for the fight against diabetes. I love this podcast I have listened to every episode I highly recommended search for insight the breakthrough anywhere you find podcasts, and a good time to remind you this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Dr. Ponder, thank you so much for joining me.
Dr. Stephen Ponder 2:50
Thanks for having me today. Appreciate it.
Stacey Simms 2:52
Yeah, it's I'm excited to talk to you. But before we talk about sugar surfing and some of the listener questions 50 years with type 1 diabetes this month, how are you doing? And do you remember your diagnosis?
Dr. Stephen Ponder 3:03
Oh, very much. So I was nine years old when I went into the hospital. And I was having fairly mild symptoms, increased urination, you know, weight loss and so on. Parents were puzzled by that took me to my pediatrician. And I don't remember all the details. I do remember getting poked a few times. And lo and behold, later that day, my mom was getting was called by my pediatrician. And I was admitted to a local hospital in an old fashioned ward of all things with four beds. They were they were not separate rooms at that point in time. And I was managed for about nine to 10 days in the hospital. Interestingly, by today's standards, I never saw a pediatric endocrinologist. Of course, there were not many of them in existence in the in the 1960s outside of large, you know, academic institutions. But I was managed by a pediatrician my entire childhood.
Stacey Simms 3:55
You were managed by a pediatrician. That's fascinating. What was the treatment? What was the management like?
Dr. Stephen Ponder 4:01
Well, not unlike a lot of people today you know where you'll hear stories where the doctor or the nurse handed down a lemon or an orange to practice injections on I really fell into that classic model where that I was given a piece of fruit to inject my insulin into practice. We did have plastic needles back then but the reality was I was sent home with glass syringes and reusable needles which were about 2625 to 26 gauge which by today's standards were huge. In terms of both length and and and width. And I took one shot today of a what what doesn't exist anymore and insulin call lanti le n te the closest thing that comes to it is his mph insulin, the cloudy mph and even many of your listeners won't even know what that is anymore in this day and age but I was treated with lenta insulin for gosh about 15 years until I started medicals School in 1980. And my first endocrinologist who put me on the path to multi dose insulin therapy, and very quickly after that insulin pumps,
Stacey Simms 5:09
Wow, that's amazing how much the practice must have changed what led you to become a pediatric endocrinologist?
Dr. Stephen Ponder 5:15
Well, I think that diabetes camp when I went to camp in 1981, it was kind of interesting. The person who ultimately would become my mentor was doing a research study for one of the insulin companies that were just rolling out biosynthetic human insulin, up until then we were using animal insulins. And during that study, his research nurse asked me this innocent question about diabetes camp. And she said, Oh, by the way, Steve, we have this camp for kids with diabetes. And I had actually gone to camp, not the same one. But I'd gone to a camp a couple of years after I was diagnosed. So I said, Sure, why not. And I said, it was about that much commitment. And after I went to the camp, in 1981, I just found my calling, I went back every year, and I have been going back every year since and, and about 25 years ago, actually became the medical director of the children's diabetes camp in Texas at the Texas lions camp. And that pretty much sealed my fate in regards to becoming a PDA, pediatric endocrinologist. The friendships I made, and the people I was able to, in some ways, I suppose influence. And it's been something I'll continue to do until I can't do it anymore. And I go back every year, I've spent several years of my life in the town where this camp is located. In fact, we recently, about 10 years ago, they just recently purchased a home not too far from there, which I may well retire to at some point in the future. You know,
Stacey Simms 6:52
this is the time of year when a lot of families have already signed up for summer camp for diabetes camp, but there may still be people on the bubble trying to figure out is this the year we do it? What would you say to them? Why is it good for kids? And what about the reluctance of cash? You know, I think it'd be home sick, are they gonna be taking Well, you know, care for as well as I can do at home?
Dr. Stephen Ponder 7:12
Well, I think it depends on the camp, the camp that I work at, serves children with special needs during the rest of the summer. And so they're very accustomed to taking children whose parents are, have been generally reluctant to let them out of the home. And these are children and they have visual problems, hearing problems, physical disabilities, cerebral palsy Down syndrome. And so they're extremely capable and competent. And getting the young boys and girls involved very quickly. In fact, as soon as the children are dropped off, they're whisked away to be, you know, to a playground to be active, to get settled into their, their banks and so on. They have really taken it to a fine art to the ability to keep kids from being homesick. Now we take kids that are aged eight to 15. At this camp, and, and yes, there's always a little bit of that at the beginning. For some of the eight year olds, not always, but some of them may struggle a little bit. But they are generally within a day or so just right in the swing of things if not just in a matter of hours into the swing of things. So I think we've we've not had to worry so much about that. Now my medical staff, we take about 75 people on the medical staff and we have 220 campers in two separate sessions. So 440 total, and we have a very high level of competency in that group too. Many of them are former campers, their medical professionals, nurses, doctors, you know, endocrinologist and volunteers. So we I think we've done a pretty good job over the last 35 years refining the methods to keep kids engaged, happy and active to the point that when they go home a week later, there are many of them or would like to say a little bit a few days longer.
Stacey Simms 8:52
I think diabetes camp is fantastic. My son is going to have his fourth year fifth year he'll be he'll be a fifth year camper this year. And it's been amazing the friendships he makes the the kids he stays in contact with and the empowerment this camp is where he did his first inset it's where he moved his Dexcom to a different location it's it's just so great for those kids to kind of figure out who they are I think two away from their parents. I'm a huge supporter of summer camp I think that's great.
Dr. Stephen Ponder 9:20
It's a wonderful experience all the way around and and and it forges some great friendships as you've already mentioned, that can continue well after camp especially I suppose in this day of social media era of social media. The the campers can stay in touch but you know,
Stacey Simms 9:34
don't get me started on the group texting that goes on my kids go to a different a longer summer camp later in the summer to them the group texts that are going it's crazy. But let's let's talk about sugar surfing. You have really hit a nerve I think in a great way with so much of the diabetes community. Sugar surfing and I'll ask you to better explain it but it seems to me is about learning how your body reacts and really Staying on top of your diabetes, more so so that you're I guess less reacting less to what's going on trying to predict more. And instead of making big changes all day long, trying to kind of nudge your blood sugar here and there, am I am I even close?
Dr. Stephen Ponder 10:15
Oh, you're absolutely right. That's exactly what it's about. It's management in the moment, as I say, in the book, once you look at blood sugars in a dynamic fashion is something that's constantly shifting and changing, you come to the same conclusion that you have to make anticipatory judgments as well as reactive judgments. And in a perfect world, half of your control is what you plan. The other half is what you have to react to what you have to do based on unexpected occurrences. And that's just life in general. So I think you can take a lot of the things you know about life in general and apply them to diabetes, you just have to be comfortable, or develop a sense of comfort with the various forces that you have at your disposal, that can move your blood sugars around whether it's insulin activity, the food you eat, the types of foods, the amount you eat, when you eat them. And when you boil it down. Diabetes Care is nothing more than a series of informed choices. At the beginning, those choices are in some ways made for you, or at least you're instructed to make these choices a certain way. But many people find that very limiting, and they want to break free of that. And many of them have and have done that well before I wrote this book. And whether they call it sugar surfing or have some other term for it. They're making more management decisions in the moment, which really improves their control and helps him better steer their their glycaemic trend lines in a more normal fashion.
Stacey Simms 11:43
Well, let's see if we could get kind of specific if you don't mind. I'm curious, like, how would you tell someone, here's how we're going to use sugar surfing to make your morning and your breakfast, a little bit more smooth, would you mind maybe taking us through that, like you wake up at a certain blood sugar and you're going to eat something for breakfast and how you might handle that?
Dr. Stephen Ponder 12:03
Well, a lot of the principles behind sugar surfing are things have been taught for many years, they include, you know, waiting a sufficient time after you take your insulin, to better time it or get it in synchrony with the food you're about to eat. Also understanding the glycaemic or the the fingerprint, if you will, of the meal of the food you're about to eat as well. So you have to match those two things up, you know, I use metaphors a lot. And I will say this to the young children, that, you know, a football quarterback that's throwing a football to the wide receiver is actually throwing the ball to a spot that there's no person at at that particular point, it's released. And you're trying to do the same thing with between timing food and insulin. If If food is the ball, and the wide receiver is the insulin, you know, the the quarterback, that is the patient needs to lead, you know, lead the inflammation of the lead a little bit before you throw the food at it. And in a practical way, what's your surfing, when you're looking at the trend line on your continuous glucose monitoring device, you will often want to wait for a band or an inflection point downward. That generally occurs anywhere from 10 to 15 to 20 minutes, maybe longer, maybe shorter. After that insulin dose is given such that the downward force that insulin is being seen on the glucose trend line, then the when the food is consumed, then it's more likely to be matched up or synchronized with the rising force, if you will, of the sugar that comes from that particular meal, assuming there is a lot of carbohydrates and you have to then adjust that insulin dose according to what you understand about those that particular food. And to be more specific for breakfast, I promote the concept of the top 10 list. And this is not David Letterman perspective. There, everyone has a top 10 favorites, everything you have a top 10 favorite breakfast, the top 10 favorite lunch and dinner. And that can easily be determined over the span of several weeks, you could actually count well how much how many times they this person he decided the other thing anyway, focus on your top 10 list. So if you if you enjoy a certain type of cereal, or oatmeal or toast or pancake or whatever you have for breakfast, then determined over time. And this is through observation, determine what effect those nosepieces meals have in general on your blood sugar, how soon they respond, how how aggressive they tend to be. And then you design an insulin regimen that best matches those and you use your trend line on your sensor to give you the best idea of how well you're matching those two things up to the point that you minimize the rise in the blood sugar. You want to prevent the spike that occurs after the after you eat what most people make the mistake of doing and they've been taught this and it's not always their their fault is they've been told it is to take their insulin at or after they eat. Now while that works fine for a child or toddler who you don't know will finish their meal if it's an older child or an adult who can easily you know, complete the whatever they've been had food put in front of them, then they should be timing their insulin with their food better with the goal to be to minimize the rise that occurs afterwards. Now, that's what the a one c elevations come from. And most people that are down in the six, seven and 8% range is what happens to their blood sugar after the not so much what they are before the. And I'll use this example a lot with people, if I was teaching somebody how to hit the golf ball, and I gave them the proper stance and positioning and so on the right clubs and all that, and I left and strike the ball and 100 times, yet, I never let them see where the ball landed, I'm not sure I'd make them a very good golfer. And that's in a sense what you're doing, you need to see where all that effort really leaves you. And if you're not checking a blood sugar in the next two to three hours after a meal, which a lot of people don't, or they've never been told to do, then you're setting people up in some ways to fail, because the assumption is that the doctor has given you some sort of ratio or some sort of formula. And they've told you to measure certain amount of food. And if you only do those two things correctly, you'll basically hit a hole in one every time and I think anybody who's done this for any period of time knows that that's just not true. And you need to have a different way of looking at this and that you may have to steer it even as it's moving. And that's a more advanced sugar surfing method is is trying to steer the direction of your your trend line after you've already taken your insulin and after you've already taken your food. But I'll tell you I do it all the time. You know,
Stacey Simms 16:31
I use it a little bit because that is you say that, and I'll put this back in here. It's a little bit more advanced, you want to be careful with this stuff. But how do you do that?
Dr. Stephen Ponder 16:39
Oh, well, you know, it's observation, it constant observation, I glanced at my sensor track anywhere between 40 and 50 times a day. It's not unlike you glancing at the dashboard of your car, when you're driving home, or looking in the rearview mirror, you're constantly scanning your surroundings as you're moving forward. And you have to take that same principle with you. When you sugar syrup. I mean, if you're surfing, you have to be well aware of your of your surroundings. So you just can't act three or four times a day. When you take an insulin dose and or eat food and expect to have the tightest control possible. You have to decide how willing Are you are her how able are you to be more aware of what's going on in the moment. As you see something trending up or trending down, keep us keep more of an eye on it and decide do I need to step in and alter the direction of my my trend line. I mean, as we're talking right now I'm looking at my sensor and I'm straight line at 96. On my particular sensor I've been I've been in my zone between 70 and 140. For the last several hours, I'm pretty much a straight trend line. But when I start to slowly drift down or slowly drift up, I pay a little bit more attention to that. And I want to see if it is is it approaching a threshold that I've decided in advance that I'm going to act upon. And I change those thresholds all the time based on the circumstances if I'm outside doing lots of intense work, I may want to run a little bit higher, and I'll tolerate a blood sugar of 161 7182. So I'll have a bit of a buffer underneath me if I'm if I'm you know doing a lot of yard work or doing a lot of exercise. Yet when I'm in the office like I am now I like being around 100 between 80 and 120. And I did steer the line in that fashion. And I do it through frequent glances and audit. A lot of times it's just looking at the sensor plot. And that's it, I do nothing else. I just stopped looking at it a couple a few seconds ago. And but if I saw something trending down, I'm going to preempt or act in advance of developing a low, I'll do the same thing in advance of what I think will become a high. Now do I sometimes over treat or prevent do too much? Yes, I've done that in the past. That's when I was just beginning this. But I've learned to use much smaller quantities of both insulin and carbohydrates to steer this line, I don't have to take 15 grams treated low, I can prevent a low with four grams. And I use things that are easily available. sips of juice, glucose tablets that have four grams of carbohydrates. So I've used these units of currency if you will. And I've learned how to use these to make small steering moves in the direction of the line of blood sugar. And that's really what sugar syrup is all about is steering that line, which everyone has. And nobody has a straight line blood sugar everybody, everybody's blood sugar line moves with or without diabetes. And I say this in the book, I say it in my workshops. The only person with a straight line blood sugar is a dead person, always on the move. And you just have to learn how to steer it. And the continuous glucose monitoring technology is a paradigm shift in diabetes management.
Stacey Simms 19:43
Let's talk about the CGM. I have to tell you in the last we've used it for a little bit more than two years and it really has changed our management and just like what you're going to talk about here in that when you see it going up. You can take a little bit of action or when you see it going down. Do you need a CGM of some kind of sugar, surf and You know, is that something that really has changed your way of even looking at management.
Dr. Stephen Ponder 20:06
When I first came into sugar surfing through the concept of what I call frequent pattern management, we did a research project a few years ago, we published in 2012, and diabetes care. This is a randomized control trial, where we developed the technology which would share information every night, with families, electronically, they their blood glucose meter was a wireless ahead of wireless modem, it would upload to the cloud, and every night, it would send all the information back in a very colorful format for families to look at. But we did a year long study where we wanted to see what the impact of that that frequent feedback would have on on on behaviors. And we found that we saw improved control. with patients who got that regular feedback rather than taking the time and effort themselves to go download or print something out or write things down in a logbook. And such, we use a control group where they everyone else just did that, they just they would do that whenever they felt like it. But that frequent follow up that frequent exposure to the data, improved control by a full percentage point, if there anyone sees or over 8%, at the beginning of the study, after a year, it had dropped and stayed stayed down about 1%. If it was seven and a half, or below, I'm sorry, it is below eight. That is they improved by about a half a percent. And this was with zero physician interaction with just getting information back in their hands. So this is a very, very preliminary version of what you could call CGM, which is, and that's really hyper frequent pattern management, because you're glancing down at that sensor. Now, that depends on the human being that using that data, you know, yes, it's recording every several minutes, it's giving you a data point, but somebody still has to look at it. And somebody still has to make decisions about what to do with that information. And then they need just like Kenny Rogers, you know, you know, walk away, run, hold and fold, and that sort of thing. That's what you're doing with with this information, you're making decisions in the moment. The fact of the matter is, they see that people are making decisions all day long with your diabetes. This is in the book, there's a study a few years ago that showed the average person without diabetes makes 221 choices a day about food. And so that's just about food, much less whether you have diabetes, and you're worried about food. So choices are the currency of control. And as you're making these choices, you're not always going to make the best choice, you're always gonna make the right choice. But you hopefully you're somebody that's wise enough to learn from those choices, and make better choices the next time. So it's a constant series of self improvement steps that you're doing with sugar surfing, it's not that the doctor gives you or issues you a set of directives that are somehow magically going to keep you in control. Those are starting points Don't get me wrong, I think dosing algorithms and so on, are all right, but they're not an end all be all. In fact, I have a hard time giving them out to patients now because I don't believe them or use them myself, other than just as a starting point. And I can't and I say that as a caveat, the family that said, Listen, I'm going to have to do this because you have to have your school orders for your child that a nurse will have to administer, I can't expect the nurse to be able to nuance things like you can as a mom or a dad or as a teenager. But I have to do this, it's part of what I have to do now. But it kind of pains me a little bit that I have to do this because I don't believe in it anymore, like I did a number of years ago, because of the dynamic nature of how diabetes can be controlled. Now you can get reasonable controls, don't get me wrong with with your with your algorithms, your carb ratios and your correction factors and so on. But, but you really can, you can take it to a whole nother level. And I get my keep it once he's down to 5% range. Now, by doing this in a dynamic fashion, you can get a good respectable 6% to 10% a one c by doing it old school, you want to call it that way. But you want to take it to a higher level and get down to the five or even to the normal. Below that it takes a lot more, you know, attention to detail. And and and sugar surfing.
Stacey Simms 24:00
Well let's let's grab a couple of questions that I took from social media for you about that exact point. This one is these are mostly about kids. But I think they're they're relevant overall. So this person says, if you want to employ just a couple of techniques with a child to increase in range time, what would they be? I don't this is her. These are her words. I don't want to go insane and spend every moment thinking about and evaluating my child's diabetes we want to live but I'm willing to make some changes.
Dr. Stephen Ponder 24:29
Absolutely. That's a great question. The first thing that I find with any patient I see when they come to see me new and they've been taken care of somewhere else is that they do the they don't do as good a job in timing the insulin and we touched on touched on that a little bit earlier. Many folks will come in and they may have been very well trained. They're very well motivated, but there's still dosing insulin after the fact. And if you see the impact of impact of that, on the rise of blood sugar that occurs after the meal, you will quickly say well, we need to do something being different, we need to take that infant ahead of schedule and we can. Now depending on the child, if there's somebody you, you know, who will reliably consume the meal they have in front of them, then then go for it. If it's somebody, you're not sure that they'll eat the whole meal, if they're on an insulin pump, there's some tricks you can play, like, extend the bolus over 30 minutes or 45 minutes. That said, once you know that, they're not going to complete the meal, you can still aboard the rest of that dose, and they can get about half of it that way. So there are all sorts of tricks you can play if you're using pumps. Now, if you're doing shots, you have to just be certain that that child is going to be able to consume the carbohydrates that are put in front of them. And, and I think that's an important that's an important tip and sugar surfing, is timing, timing is everything. The other is checking blood sugar Two hours later, whether it's with a sensor with a meter, and correct anything that's out of range, and you want to use a golf metaphor for that. That's what that's like having part three part four Whole Again, my feeling is nobody has a hole in one with every every insulin meal combination, that two hour reading gives you an opportunity to do a corrective dose to steer that blood sugar back toward your your, your target number, which in turn will lower that a one c because you'll spend less time up in the higher range which again, will contribute to a higher a one c value.
Stacey Simms 26:20
I like all the golf metaphor is you got to come to Charlotte and I'll take you out we'll play some golf, do you? Alright, so the next question is, can I ask? She says, Can you ask Dr. ponder about basil rates and we didn't talk about this yet at all. But she goes on to say I know he doesn't advise we use too many. But I find that my child a teen does better with about five basil rates, especially at least two overnight to account for the morning rise. Can you address that?
Dr. Stephen Ponder 26:49
Well, basal rates are our habits have a purpose behind them that sometimes they have. Some people use them in a different way. Let me just try to explain this. In the way a basal rate should work is just to keep you steady at whatever level your blood sugar is after your mealtime insolence, or your corrective insolence have gone away have dissipated. In other words, he just keeps you steady. However, some people use basil rates to offset indiscriminate eating and snacking that people don't vote for. And so as a result in in the Western world, we tend to run basil heavy, as opposed to maybe in some other parts of the world. In Japan, for example, they run rather basil light, there's less between meal snacking that goes on in some cultures. And there was a study done a few years ago that looked at basil insulin needs in and Japanese children, it found that they were about 30 to 35% of their total daily insulin dose, which flies in the face of you know, the general rule of thumb, which is you take about half of your daily insulin dose is a basil, insulin. So I think that I think there's a general tendency for people to look at blood sugar patterns, and just try to adjust basal rates rather than just to steer them around in a moment. There are there are increases that occur in blood sugar's overnight. And I agree, growth hormone and cortisol, which is another hormone that you produce early in the morning upon awakening can steer your blood sugar's up. And if you're trying to anticipate those in advance and, and and give additional infant espressos that has been something that's been done for many, many years, but generally speaking, most people can do well with either one, two or three basil rates. And a good friend of mine who you may have interviewed Steve Adelman is notorious for saying that anyone with more than three basil rates needs a new endocrinologist. And he can say that he's an he's a, he's an adult endocrinologist with type 1 diabetes almost as long as I've had it, and very well known and respected in the community. And I certainly adhere to his recommendation. Now if I if I see a new patient, it's on five or six basil rates, if I can tell them if you don't eat breakfast, which is what you should be able to do and your your blood sugar's in range. If your base rate set correctly, you'll stay in range more times than not over the next several hours until the next meal. But if all of a sudden you're you start dropping or start going up, well, your basal rate may not be set, right? You may be thinking that it is but it really isn't. But just think about the original intent of a baby, right is to keep you steady. It's not supposed to bring you down, it's not supposed to let you go up. It's just supposed to keep you at where you're at. As soon as the other insolence that would move you up and down, have gone away. And so if I wake up if I'm if I'm traveling through the night at 200, you know, between, say, I go to bed and I go up to 200 at midnight, and I'm at 200 in the morning, my basil rates, okay, that's perfectly fine. It's just that I didn't correct that that height and bring it down. It wasn't that it was going from 200 to 300 to 400. That would have said it was not enough or it was going from 200 to 100 to 50. Over six hours, that would be too much, but that it would just stay steady. That's the purpose of the base rate. It's different versus a bowl with insulin. So the the individual injections of fat that the insulin I know blog, blogger Piedra that used to maneuver up and down another metaphor, a pilot told me that they perfectly understood this concept of sugar serving. He said, you know, he's cruising at 30,000 seats. And you know, he that's what he's that's his cruising altitude. And if he wants to go down to 28,000 feet, he has to take action to make that happen or go up from 28,000 to 32,000 feet in his in his jet airplane, he said, I totally understand the concept of maneuvering, various levels in the base rate is just maintaining altitude, that's all it is. So these rates are sometimes misunderstood. And they're, they're overdone and some people, but I've gotten to the point of just letting people play on the rates they are. And if they can, if they live up to the original intent, and CPU steady in the absence of food, or exercise, then then that's fine. But I find a lot of people don't find that's the case, they find it when they don't add the foods and all the facts in there that the base rate really isn't what they need, they need to be on something more simple. And I try to simplify that whenever I can.
Stacey Simms 31:06
That's really interesting. And while we were talking there, I grabbed my phone, because I take pictures. Anytime I change a pump setting, I take a picture of it, because then I always have it with me, even if my kids pump is not with me, I have I have six programmed into my son's insulin pump. But the funny thing is that three of them, well, four of them really are about the same as the one you know before. So I really, if I really wanted to, I could get it down to three. Tomorrow. That's funny, I never even thought for some reason I never even thought about that. But they're but they're separated by point 0251 of
Dr. Stephen Ponder 31:39
them very subtle, it remember, it takes about an hour and a half to two hours before any, any rate change has a significant effect on blood sugar. So what happens is, if these are very close together, they may essentially just be blending into each other. And there's there's wobble in a pump rate the pump is not, you know, it's accurate up to a point. But even it has some variability built in. And if you factor in air bubbles, and you know, the sides may be leaking, there's there all sorts of things that, that make our diabetes prone to having variants in it, and plus the meters themselves, the sensors aren't 100%, but they at least give you a trend. foods are digested differently every day. There's so many variables. And it's in chapter five of the book, you know, false idols, there's so many variables in our control that you have, you can do nothing but just steer within a range. And I think that's the bottom line whether my blood sugar is exactly right now as I speak 93, or whether it's 95, or whether it's 90, Israel irrelevant to me, it says I'm trending straight, I'm in a zone, which allows me to function normally do my job, have this conversation with you, and not have a worry that I'm going to be dropping in the next 15 minutes or start spiking up in which time I'd have to excuse myself and take a small dose of insulin to prevent that.
Stacey Simms 32:58
Let me ask you another question. And this will be more of a personal one. For me. I did get a question about teenage boys. This one wants to know, what should a teenage boys a one c be? And I'll let you answer that. I think there's a lot of variability there, too. That's so personal. But my question is about teenagers. My son is 11. And he was diagnosed before we turn to so of course, we went through many years, and we did everything. He has a lot of independence. He takes care of himself beautifully when he's on his own. But the last year, really less six months, we've seen some of this teenage goofiness that I've heard from other people sneaking in, in terms of well, I forgot to check. I didn't bring my stuff. And you know, with the hormone levels, we're seeing blood sugars that we haven't seen in quite some time. I'm curious what you tell parents in your practice, you know, what do you do when you're super enthusiastic kid who is very responsible? And does everything suddenly? Is this stinky teenager who's in a different mindset? Frankly, it really it does seem to happen to so many people.
Dr. Stephen Ponder 33:55
Oh, it's actually very normal. That's that's the normal process of adolescence, you know, they, they're no longer you're smiling little kid, they're they're trying to establish their own identity. And one of the first things they do is to start to you know, they're spending more time out of the house or spending time with peer groups, they get into that phase where they want to be like everybody else, and then you don't know what you're talking about. It goes you go through that phase. Now, some people go through that more than others. Some don't seem to go through much at all. But you know, the listeners here are going to, if not in their own families, no other families for you know, the teenagers were just doing great as children, and then they just totally lost interest in any of their diabetes care or their diabetes management No matter how much they knew. And intelligence is not really the issue so much. It's, it's it is a lot of things that that are very unique and very individually as you said, even within a family you can have two or three responsible adolescence and then one that's just totally, you know, irresponsible, even though they they grew up very well adjusted, and they We're very well supported. That's just the normal process of of growing up as a team. I'll say one other thing, though, and I want to make this point clear. You know, a lot of people can can get comfortable with the two year old that grows up to be 11, doing all these things and and the parents can then start to be backing off of it, perhaps more than they should. And I always use this this example. And it's kind of silly example, but I tell parents, would you let your 11 or 12 year old kid with diabetes, pay your bills for you? or drive a car? I mean, some of these 13 year olds are physically capable of reaching all the pedals and driving a car, they have better reflexes in the rest of us. Would you trust them to do that? Well, most parents who say, Well, of course not. And my comeback is, well, you'll trust them with a life threatening disease, but you won't let them pay your bills, you won't let them drive your car. And so it's kind of an interesting conundrum there. It's because you've been lulled into a sense of security, that they've been doing this so long that because they can do the act of doing this, the actions of doing this, the sound of how they had the maturity to do it. It's like me saying, you know, because I hammer a nail a sock aboard, and I'm a carpenter, the carpenter is a set of skills and experience. It's not individual actions, all strung together in diabetes, because it's involving actions like taking a shot, checking a blood sugar, logging something, and even recognizing something higher low, that's a little bit different than organizing things and working through a problem and solving a problem. Most kids are concrete thinkers, up till about age 16. Now, a lot of them can be shown how to do things. And through practice, and coaching, they can learn how to solve most problems. But if you feel a raw concept that a teenager, without any background, just the concept, most will struggle very, very hard to kind of put an answer together to that all but just a small few. That's because kids are concrete thinkers, and about 25% of adults are concrete thinkers as well, that's been proven in the medical literature for years. Diabetes Care, especially surfing does require a lot of abstract thought, you know, those lines that you see on your sensor plot represents something that you can't see feel or touch, you know, if you're measuring the amount of sugar that's, that's present in the four liters, five liters of your blood, and how it's coming and going. And there, there are entry points and exit points. And that's a very abstract thought when you think about it. And you're trying to say, what are the forces that I can use to influence the rate of entry or exit of glucose into that closed space called the bloodstream, even though knowing the body for sugar and other places you're not measuring the sugar in the liver, you're not measuring the sugar in the in the muscles, and that's where some of your sugar pops up in your blood. It's when you stress, you're shoving sugar out of your liver and muscles in your blood. Likewise, it doesn't measure the count the amount of carbohydrates in your gut because they're still in your gut being absorbed and digested, you're just measuring within that bloodstream. In a sense, that's what matters, obviously, because your brain needs drawn sugar, but you're just not you're a flux manager in Sugar Surfingall about managing flux, and drift. And I say that in the workshops, it's in the book. That's what you're doing flux is a rapid upward or downward swing, a blood sugar's drift if something more gradual or slow, and how you learn to do that over time. And as you develop more skills and confidence is what determines your abilities as a sugar surfer. In the end, Dr. Ponder,
Stacey Simms 38:19
let me devil's advocate for just a moment about the the advice to parents. And I guess I'm going to ask you to play a little psychiatrist here. It hardly seems fair to parents, that at the time, when you say they're not ready to drive a car, right at 11, or 12, or 15, or or operate heavy machinery, why would you let them handle their diabetes? It's not fair that that's the age at which they seem the most resistant to input from parents. So as a parent, we know how do you balance that kid who wants to, you know, who's saying to their parents leave me alone, I've got this. And I get dumber as my kids get older, apparently, I know, a lot less than I used to know, according to them, how do you do that? As a parent? How do you say I'm going to help you I'm going to oversee this just when they're pushing back?
Dr. Stephen Ponder 39:03
I think the hardest part is when somebody's managing a child from age two onward. The person who really owns that diabetes is at that point is the parent. And when you're trying to make that transition and letting them manage that, oftentimes, the parent may may take an emotional response, like, well, gosh, you're messing up my diabetes that I've worked so hard to take care of all these years, and they're going to make mistakes, they're going to fall off the bicycle, you got to put them back on. The thing to do is, and I'm not saying you, the parent does everything until they're 16. In fact, on the contrary, that parent needs to become a sharer, they need to be sharing those responsibilities with the kid. And in fact, they should be there with them not to not to lecture them, not to tell them what they're doing wrong, just to be there to support them. And that's that's a very difficult balancing act for some parents who become accustomed to handling all the decision making, judging everything that goes down and in telling the child what to do and child's obviously pushing back. That's the whole point of adolescence is to break away from the family. And diabetes is caught in the middle of that. So the research and this is this is work that's been done by Barbara Anderson and others, good friends of mine is that shared responsibility up until around age 16 is the key doesn't mean doing things for them. But being there with them, you're still providing them the supplies, you may still be reminding of the things, but you need being there and letting them do it with your you know, with your guidance, or maybe your just your presence is all as necessary, especially, for example, in your case, your 11 year old sounds very capable and very potentially independent. But he would still benefit from having you there in the room, when you're when you're, you know, checking blood sugars and our dosing or making dosing decisions inside you have any questions and he doesn't well, then fine, but at least you know, it's been done. And it's and it's a shared responsibility. He also knows you care, at that point is as well, as opposed to saying, Hey, this is your responsibility, you gonna live with this rest of your life, I've heard that a million times from people that, you know, parents would want to drop that off and a 10 or 11 year olds lab, expect them to man up or woman up to do this. And all they're doing is, is setting a kid up to fail long term. Yeah, they may do it for a few months, or maybe a year or two. But at some point, that adolescent phase kicks in, and they start taking they started risk taking doing some, some experiments and so on. And that's what adolescence is about it is about risk taking. And that risk taking could include skipping insulin doses, eating more food, not checking blood, sugar's all those things, you know, and it can, if the parents aren't there, at least to support them, that's more likely to occur. That's, that's what I've seen over the 30 years, I've been doing this.
Stacey Simms 41:43
Thanks for talking about that. I think that is a really, really important piece of information to keep in mind. And you know, you are a pediatric endocrinologist. I know so many adults do so well with sugar surfing, but I want to pick your brain for one more question if I could, for the parents. And that is, it seems to me, you know, I am I am not a medical professional. But it just seems to me that there is more fear out there for parents than evolute when my son was diagnosed nine years ago. And I think some of that has to do with social media and how things kind of get spread and and rumors get started and different things get out there. But what do you tell your patients, parents about fear? And I guess I'm talking about, you know, overnight, checking every hour or letting kids go on sleepovers or things like that, or even just the the kind of fear that isn't specific in that way? Do you talk to your parents, your patients parents about that?
Dr. Stephen Ponder 42:34
Oh, yeah, I completely agree with you. The rise of social media allows one isolated story at any point in the globe, to go viral, and then frighten everyone else on the planet. You know, in regards to the you know, the one that everybody worries about is the severe hypoglycemia, the so called dead in bed syndrome thing. And then I see this all the time on social media. In fact, I've gotten out of several groups for that out there, because it just does nothing more than whips people up into, into a frenzy that this is going to happen to their child. I've been taking care of kids for 35 years, and I have had people that have passed away from diabetes that are friends that were adults, and some of them that are from two or three of them are eight to say this, we're from suicide. Another was from another was was from severe hypoglycemic event, this individual also had some other hormone deficiencies that made them more prone to have a problem, they were an adult as well. But in general is exquisitely rare. In some cases, and this is never discussed, you never see the details and the stories. Sometimes, some of these kids, these kids can have struggle with their control may not have the proper education or training. Some have some haven't. But you never know. And you really can't question that when when when you get a story like that online. So you have to just take it at face value that such and such loss your life and in there's no way of escaping the fact that that's tragic, completely, totally agree nobody should lose their life to this disease under any circumstances in childhood or even young adulthood In my opinion, but it does happen. People, you know, people have bad outcomes, but it's not something that hangs over my head every night. I try not to hang it over anybody else's head in my practice, and but it really does define people's concerns. I do know that that same fear is oftentimes leveraged as in a way to raise funds for diabetes as well. That's something I've been long critical of. And I've said that to many parents in the privacy of the clinic room that that you know, being told it we're gonna save you from disease we're gonna kill your kid really upsets me quite a bit because my goal for anybody with diabetes is to live a normal life you know, it has nothing to do with a one sees it's really being able to be the person you want to be the God meant you to be. And that's what What I aim for and anything I can do to help you achieve that through coaching knowledge, that's sugar serving whatever, people have to make their own choices, but I've not found fear to be a good motivator. In the long term for for achieving that goal. It's really trying to empower people to teach people they can take charge of this if they want to. But it's their choice. And I'm totally a believer in choice. It's all riddle to the book. It's all choice choice choice. I managed people who have chosen to do only so much with their diabetes, as much as many people listening to this and think that was the otter crazy, it happens all the time. And there are other people who, who spend their whole day managing this. And, to your question earlier about, you know, maintaining sanity, yes, you have to maintain a balance in your life, you know, watching your diabetes constantly throughout the day is not normal. You've got to have some balancing point out there, whether you're a parent or an adult with diabetes, but but fear is my one of my greatest
enemies. And, you know, the, quote, the famous, you know, Roosevelt, you know, you know, all we have to fear is fear itself. And that's very true. My parents were not fearful of hypoglycemia when I was a kid, but we didn't maintain the kind of control we're trying to maintain now, either. And so there was never a thought given about passing away. The fear back then was complications. And privately, my parents, and I even thought that I wouldn't live to see, you know, young adulthood. That was what they knew back in the 60s, because it's all based on information from the 20s 30s and 40s, which was not terribly good at that point. But over the years, I've learned what that was all, you know, that was all just myth and misconception on my part, because now, you know, now I've had it for 50 years, and I hope to have it you know, for many more years to come, I have beat this disease, anybody who's lived any length of time has beat this disease. In fact, I use this I say this to parents all the time, in the in the natural world order, I should have died 50 years ago, I should have you know, without insulin, but thank God that we I live in the era that I live in, I live in the country la live ended, I have access to the supplies I need. And I have the intelligence and the access to the resources, not that not everybody has I realized in this world to take charge of this but but missing element is that desire to do so. And I've been fortunate to have that desire. And I try to, I try to promote that, that attitude with anybody I come into contact with, whether it's a patient or a friend, or an acquaintance that has diabetes, but ultimately, we all have to make our own choices. And we all have to live with the consequences of those choices.
Stacey Simms 47:37
That's fantastic. I mean, what a statement as you're celebrating or marking, I'm not quite sure what the word is. But I'll say celebrating 50 years with type one, what when, when you look to the future here, what excites you? I know, are you testing a new kind of insulin? Do you look at different kinds of equipment, what what excites you about diabetes care, and in the next 50 years,
Dr. Stephen Ponder 47:59
my feeling is that the more we can educate, teach and provide support to people with diabetes, the better off the world will be, I'm seeing a troubling trend of late have more of an emphasis on technology and devices and new drugs, as opposed to investing more time and quality education, self management education, because it said before, you know, it all comes down to the choices we make, hey, I'm using a new insulin now that just happened to come out recently. It's an insulin degludec it has a much smoother action curve for me as a type one adult, I don't have any glows at night are even close to lows at night, which is one of the known consequences of that medication. downside is it's a new drug, which means it's more expensive. I'm excited about all the work that's going on with you know, encapsulation projects for islets were for artificial pancreas is and so on. My only concern is cost of these things and costs in terms of investment in time to the patient as well as money, and who will pay for these things. And I foresee there being almost this this multi tiered level of patience in the future of people, the haves and the have nots, as as our cure, quote, unquote, you know, becomes more and more costly. But you know, I say this to parents all the time about the word cure. The word cure is Latin, it comes from the word Curie, which actually means to care, that to be concerned for or to attend to. And in that literal sense of the word cure. I've been curing diabetes for 50 years and anybody who's still alive listening to this, and has diabetes has cured diabetes since they were diagnosed. The Romans never really understood disease in the sense that we understand it today. So they just felt that if they just took care of you just you know attended to your needs, that you would your body would would heal itself. And in a way, you know, the daily care I've been taking since March 1 1966. In terms of insulin dosages, checking my blood sugar or urine sugar back in those days in some fashion and making some decisions primitive as they were back in the 60s 70s and 80s, more advanced as they are now in the in the in the in the new millennium, is why I'm still here. And that plus the grace of God that I've not had an accident or had some other illness befall me. Those are the things that and I'm very thankful that I'm just happy I wake up every morning, I really am grateful when I get up every day, knowing that I beat this disease for half a century, and there are people that never had diabetes that haven't lived that long. And I live longer than so I have nothing but grateful I am nothing but grateful. I don't waste my time, being resentful being mad at this disease. I'm totally at peace with it. I know people still struggle with it, who are listening to this. I can't tell them they should be at peace. That's something yet that's a very personal thing to say. But I am I'm very much at peace with this. And if I pass Tomorrow, I will say I thought that my life was well lived with or without diabetes.
Stacey Simms 51:05
Dr. Ponder, I can't thank you enough for joining me, I was looking forward to an interesting discussion about blood sugar maintenance techniques. And instead, I just feel like talking to you has been a light today. Thank you so much for sharing so much time with me and with my listeners. I really appreciate it.
Dr. Stephen Ponder 51:23
Thank you. Thank you much for your time as well.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 51:36
I told you at the top of the show that Dr. Ponder has a free copy of sugar surfing for newly diagnosed families for newly diagnosed people. And that information is at Diabetes, Connections calm or hopefully linked up in the show notes as you listen on different podcast apps. One of the funniest things for me going back and listening to these older episodes. This is five years ago now is the terror in my questions about the teen years and Benny Benny is 11 years old when this interview happened. He is now 16. And I gotta tell you, middle school was the hardest. You heard me talking about there but is a Wednesday inching up and it's insolently it's going way up and his brain fog. And that was all in middle school. I can't say it's been completely smooth sailing since then. Because when is diabetes ever smooth sailing, but it certainly wasn't the, quote teen years as much as the tween years for us that were an issue. Of course, we're not at the teen years yet. So I probably shouldn't say anything, I'll knock some wood and will knock on my head and all that good stuff. All right, coming up next week, I'm going to be talking to a family with a child diagnosed during the pandemic. Can you even imagine? It's hard enough to have your toddler she was three years old, this little girl diagnosed at all. But when you can't meet up with other families in person, you can't go to conferences, you're isolated at home. There's so many families that this happened to in the last year. And I'm grateful that they decided to share their story. So we will be talking about that next week. thank you as always to my editor, john Buchanan. It's from audio editing solutions. Thank you so much for listening.
Unknown Speaker 53:02
I'm Stacey Simms.
Stacey Simms 53:03
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
It's our annual game show! Based on NPR's Wait Wait... Don't Tell Me, Stacey invites panelists to try their hand at diabetes trivia, bluff the listener and limericks. This was first presented at the Friends for Life Virtual Winter conference where the audience played along via online BINGO.
Watch the show on our YouTube Channel
Special thanks to our panelists: Lauren Lanning, Justin Masterson and Chelcie RIce!
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Episode transcript (beta version - check back for proof read version)
Stacey Simms 0:00
Diabetes Connections is brought to you by Jeeva Chi popin 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.
Stacey Simms 0:22
Welcome back to another week of the show. I am your host, Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection, a different sort of episode this week, because this is one of our game shows. I do these periodically for live audiences, usually at conferences and that sort of thing. And this year, we have kind of like everybody repurposed things for virtual. And so this time around, it was friends for life and their virtual winter conference. A couple of quick things. If you prefer to watch this is on my YouTube channel for the show. It's just Diabetes Connections over on YouTube, I will put a direct link in the show notes. And while it is kind of fun to watch these things, you don't really miss that much just by listening. In the trivia section. I will say there are three questions that are show and tell. But I do describe what the guests are seeing. I think you'll easily get it even if you're just listening. As always contestants are selected at random from the Facebook group from Diabetes Connections, the group, so make sure to join me over there because we do this now a couple of times a year, especially with everything virtual and people on zoom. It's so much easier to record these than in the past. I still really love doing it live and I hope to do that someday again soon. But in the meantime on with the show, recorded in November, and played at friends for life the first weekend of December 2020. Welcome everybody to wait, wait, don't poke me the diabetes Game Show. If you have heard the NPR version of Wait, wait, don't tell me. This is our version. So we apologize to NPR in advance. In this session, you are going to meet some terrific people living with diabetes or who have diabetes in their families who have gone above and beyond to help the community and we're going to have a laugh or two, probably at their expense. Wait, wait, don't poke me. We'll feature trivia bluff the listener and much more. But before we get to the games, let's get to our panelists. We'll do a quick intro and then we will get started. So first let me bring in Justin Masterson. Justin Hi, I first met Justin, when we were talking on the podcast about his walk a mile cards and exercise and empathy, a teaching tool to help those with diabetes understand a little bit about what people with diabetes go through every day. Justin's daughter was diagnosed with type one when she was five. She was diagnosed on her birthday. Yeah, he is in charge of strategy at seek a market research firm. Fell old is your daughter now just
Justin Masterson 2:55
she just turned 11. So her birthday was just a few days ago,
Stacey Simms 2:58
when she was really diagnosed on her birthday.
Justin Masterson 3:00
it well. She fell on her birthday, but we got there the next morning. So it was technically the day after but she's now been six years and and living very well.
Stacey Simms 3:11
That's awesome. All right. Well, we will hear more from you for sure. I want to bring in Lauren laning and Lauren is a familiar name and face to many people and friends for life. She's been there usually at the first timers since the very first ffl in 2000. She used to run registration at the elementary program now she leads the moms and the first timers. Lauren's daughter Monica was diagnosed in 96. And she has been I can say first and amazing at these muffle meetups. We've been doing boring. The muffled meetups have been awesome. Thank you. Oh, I
Lauren Lanning 3:45
love them. It's great. It's great being able to connect with the fit.
Stacey Simms 3:50
Yeah, so your daughter was diagnosed in the 90s. How was she doing now?
Lauren Lanning 3:54
She is doing great. She's 20 she'll be 27 in a couple weeks. And she's at p in PA school at Stanford right now. Gotta brag. Wow.
Stacey Simms 4:04
Yeah, go for it. That's awesome. And rounding out our panel is Chelsea rice. I Chelsea, he was diagnosed with type one as an adult at the age of 25. He's been part of the diabetes community since I can remember. Chelsea is a stand up comedian who doesn't just talk about diabetes, of course, but he has been honored by diabetes forecast Magazine as one of their people to know and he has brought much needed education and humor to groups like healthy voices and Chelsea, your you've really found a talent this year for making soap. I've been seeing all this beautiful soap.
Chelcie Rice 4:37
Yeah. I've been locked in the house for quite some time. And so, you know, you get stuck with the phone in your hand and you get started looking at YouTube is like, you know, you take a shower, like you make stuff. So it's I mean, and that was like I and it's something that I that I do, if I see something that I get interested in Figure out. How do you make it? So that's how I even started. That's how I started baking. barbecuing. All this stuff is just like I just, you know, try to figure out okay, how do I do this? And so it just, I just picked it up and is is really kind of easy. And the funny thing is when I started just posting pictures, I was like, hey, how can I buy something like you know what I put in his name? I'd be like, you don't even know me.
Stacey Simms 5:29
The soap looks gorgeous knows. I actually thought it was I thought it was food when you were first.
Chelcie Rice 5:33
Yeah, no. That's the funny thing about soap is like, I mean, people talk about it. Okay, I've joined some soap groups on Facebook.
Justin Masterson 5:45
That is such a quarantine thing to say. Yeah, join some soap groups on
Chelcie Rice 5:48
Facebook like and that's the thing is like people were saying like, Okay, well, you know, people are quarantine now they're at home and they learn how to cook more than like baking sourdough. Random like, wash your hands with sourdough. I can make them fortune over this. So
Stacey Simms 6:03
all right, well, as we move on here, you are each playing for a contestant who has been selected by random from the Diabetes Connections Facebook group. So let me tell you, who you are playing with and for and we thank them very much. So Michelle Briggs is playing with Justin. All right, Michelle. Yeah, fi Comstock is partnered with Chelsea. And Caitlyn states is with Lauren. So no pressure. But these very loyal wonderful podcast listeners are counting on you. Alright, Caitlin.
Unknown Speaker 6:40
money involved? Am I gonna, ya
Stacey Simms 6:43
know, hey, look, it's all virtual be tough to get Oh, well, yeah,
Unknown Speaker 6:45
Stacey Simms 6:46
So we're gonna start with trivia. And each of you has five questions. I'm going to know we'll take one person at a time we'll go through the questions. Don't chime in with the answers. But feel free to chime in if you have a comment or something you'd like to add. Or if you have personal experience, these are all diabetes community questions. They're not all about diabetes, which will become clear and write it Don't worry, don't worry, it's not, you're not going to be judged. I also do have some show Intel because we're at home in my office. So I thought why not? pull some stuff off the shelves and ask you about it. Alright, so we're gonna start with Justin. Everybody ready? I would stare at the clock if I had one. But hopefully we'll just we'll we'll just let you know when you're at a time. All right. Our first question comes from the field of sports. NFL tight end Mike Moore. I'm already messing up. NFL tight and Mark Andrews has type one. And he plays for the Ravens. He keeps a strict diet around games reportedly eating for eggs before every game and the same kind of sandwich the day he plays. And the night before. This sandwich is a staple of school kids. What is it?
Unknown Speaker 7:57
Justin Masterson 8:00
My school. We ate a lot of chicken fried steak and salsbury steak. I don't think either of those qualify as sandwiches. I'm going to say it's the school kid. It's going to be a pb&j. I mean what's better than a pb&j?
Stacey Simms 8:16
It is a PB and J and he says a lot of peanut butter. Not a lot of jelly. He prefers the complex carbs that come in. But I would think that the chicken fried steak is a complex something. Yeah.
Unknown Speaker 8:30
Chelcie Rice 8:32
Complex. There's so many complex things that go in it. Yep, yep, yep.
Stacey Simms 8:36
All right. Excellent. All right. Next question. There is an eternal flame at Banting house, the Canadian National historical site where Sir Frederick Banting woke up in the middle of the night with the idea that led to the discovery of insulin. The flame is meant to burn until there is a cure for diabetes. It was lit by the Queen Mother. In what year? And this is multiple choice. Wow. 1979 1989 or 1999? I don't think this was featured on the crown. So
Justin Masterson 9:07
it took it took him like 50 years to get this flame idea going.
Unknown Speaker 9:11
Oh yeah, well, at least Yeah.
Justin Masterson 9:15
I feel like it would be I feel like it would be in the 70s that feels like it was enough time to get the Queen Mother on board. I'm going to say 1979
Stacey Simms 9:23
incorrect. At 88 which I think is weird. I would have thought it was like 1959 but
Chelcie Rice 9:32
okay, was all the rage on MTV. So
Stacey Simms 9:36
I just finally figured out all the Elisabeth's in the royal family because of the crown the Queen Mother and the Queen girl anyway. Okay. All right. This is a an entertainment question for you. So brec bassinger is the young actress who stars in the CW hit show star girl actually got great reviews. It's been renewed for a second season. She lives with type one and her previous series was nickelodeons Bella and the Bulldogs and your daughter might have watched this. Maybe not. What sport did the Bulldogs play this whole show centered around this team? Was it football, baseball or soccer?
Justin Masterson 10:16
Sometimes my thinking sounds a lot like googling. Now, I'm gonna say it was a soccer team. It had to be the Bulldogs soccer game with
Stacey Simms 10:31
the quarterback. She was the quarterback.
Justin Masterson 10:36
Michelle, I'll send you something nice in the mail. I'm just sorry.
Stacey Simms 10:40
Well, there's a lot of game to go. There's a lot of Don't worry, don't worry. All right. Um, here's one. You know, I, I gave this answer away in the introduction. I don't know how well everybody was listening. I do this sometimes. Alright, here's the question. How old is the friends for life conference? I mean, what year of the conference? Is this year's 2020? lorincz.
Unknown Speaker 11:07
Don't say any. Okay.
Justin Masterson 11:10
1999. How about that?
Stacey Simms 11:15
Well, I'm gonna give it to you. Because it is the 21st year, but it started in 2000. Right. All right. But we'll give it to you. We'll give it to you. That was on the line that was on the line. Okay. And your last trivia question, or this is a show and tell. I hope I don't get in trouble for this. We love all our sponsors. Okay. In in 2018. I don't know how well you can see this. Yeah, in 2018. Can you see this? Okay. accucheck had a diabetes awareness campaign where they sent out these hands, promoted by country singer, Ben NRW. The idea was that you'd make the symbol, right. And you would upload a photo to your social media platform with this hashtag. And then their parent company would donate if they would donate a buck to diabetes, education and awareness. So here's the symbol. What was the hashtag? Was it give a book about diabetes, Buck off diabetes or go buck diabetes?
Justin Masterson 12:16
I can't believe any of those are true.
Unknown Speaker 12:19
I'm gonna read it again.
Stacey Simms 12:25
All right, we look at the answer in just a moment. What do you think it is? But first, Diabetes Connections is brought to you by Jeeva Kibo pen had almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's what tchibo Kupo pen comes in. Chibok is the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it? You pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the G book logo. g Vokes shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Chico glucagon.com slash risk. Now back to the game and Justin is trying to guess the buck hashtag
Justin Masterson 13:18
give a buck for diabetes buck off that diabetes or go buck
Stacey Simms 13:24
go buck diabetes.
Unknown Speaker 13:25
Oh my gosh.
Justin Masterson 13:29
I'm gonna say it was a buck off. Oh, hey, if those guys ever need some marketing consulting, tell them to give me a call. I think they might be on the wrong track from well,
Unknown Speaker 13:43
Stacey Simms 13:43
You do Chelsea?
Chelcie Rice 13:44
Yeah, I do remember that when I remember seeing is like are they really going with this one? That was
Stacey Simms 13:51
there. Remember that at all? Ben rule. It wasn't it was not too long ago. It was 2018. He was on the Today Show or one of the morning shows. And it was it was really cute. I think they had a bull riding thing. I mean, it was really cute. Except for the part that was alright, you did great.
Chelcie Rice 14:10
I gotta say, though, when you first pull that out. I thought that was a flying finger of fate from laughing in Asia, but yeah. Which finger to show first it getting easy. We don't want to give it away.
Stacey Simms 14:31
All right. So Justin, thank you. Standby. We're gonna move on to Lauren. Now for the other trivia questions. And we're starting with technology. Right this year Insulet changed the name of their hybrid closed loop system from Omni pot horizon to something else. Do you know what they changed it to?
Unknown Speaker 14:51
Unknown Speaker 14:54
no, I don't it's Oh, I'm so bad. No, no,
Stacey Simms 14:59
it's Omni. Hi.
Lauren Lanning 15:03
I can't remember no go.
Stacey Simms 15:06
Sorry, Caitlin. Anybody? No Omnipod five. I don't don't ask me what coober Omnipod five man,
Unknown Speaker 15:15
yet Anyone else? No,
Unknown Speaker 15:17
Justin Masterson 15:19
I know about the Omnipod five as a thing. It just never occurred to me you would change from horizon to five. It feels like a downgrade and
Stacey Simms 15:26
it's Omnipod five powered by horizon.
Unknown Speaker 15:29
Unknown Speaker 15:30
I don't know, either. Okay.
Stacey Simms 15:33
Okay, so this one is a little silly, but I enjoyed putting this one together. Major League ballplayer Adam Duvall was diagnosed in his early 20s. He's had a great season with the Atlanta Braves. But in the minors, he suited up with the August green jackets, which is just a great name. What is the mascot of the minor league baseball team? Augusta green jackets. I'll give you three choices because this really has nothing to do with diabetes, but I thought it was funny. Is it an anthropomorphic green jacket? Like you know the Masters little green jacket? Is it a fierce green insect? Or is it a little green golf caddy?
Lauren Lanning 16:17
I'm going with the answer. Look for thick,
Stacey Simms 16:21
green jacket. green jacket that looks like a person. Yeah, no, it's a green insect. It's the like a yellow jacket. jacket. It's got a little stinger. It's very cute. It's very cute. I had nothing to ask about Adam Duvall. Sorry. All right. Here's a here's another one. You might know this one. Eric church, just one Entertainer of the Year at the Country Music Awards. I was in attendance a couple of years ago when he gave $1 million to a local jdrf chapter at their Gala. What is his connection to diabetes? Is it Oh, go ahead. Oh, we are multiple is his connection. He's got a connection of type one. Is it his mother, his daughter or his wife?
Lauren Lanning 17:08
His mother, it is his mother
Unknown Speaker 17:10
act. Yeah. Excellent. Yes, his
Unknown Speaker 17:12
mom got one. Yay.
Stacey Simms 17:16
All right. Um, diabetes, mine ran an article earlier this year referencing how many potential cgms are in the works currently being studied or built or trademarked? How many CGM continuous glucose monitoring systems Did they say are potentially coming? 1929 or 39?
Lauren Lanning 17:41
I'm going to go with 29
Unknown Speaker 17:45
it's 39. Wow,
Unknown Speaker 17:48
isn't that crazy movie?
Unknown Speaker 17:49
Unknown Speaker 17:53
Chelcie Rice 17:56
we really need that many choices.
Stacey Simms 17:58
I don't think we're gonna get that many but let's all throw in.
Chelcie Rice 18:02
I mean, 39 What are we gonna be buying cgms at like, you know, Kroger or something.
Stacey Simms 18:07
People like poor Gary shiner. The You know, there's certified diabetes educator who tries every system he's gonna be covered.
Justin Masterson 18:12
So let's just work through all those you can only wear for the time before it really.
Stacey Simms 18:19
Lauren Lanning 18:21
I was on an airplane with him. And I think we were going to London for CWT conference. And i ne had on like, a, he had on a few different pumps testing. Yo, what happens? It was it was interesting. He's
Stacey Simms 18:37
amazing. All right, your last question. Great, Chelsea.
Chelcie Rice 18:41
No, that was just imagining and trying to go through ATF Yoda.
Unknown Speaker 18:45
Unknown Speaker 18:48
Want to explain.
Stacey Simms 18:52
Just I'm just beeping every two minutes. Don't mind me. Lauren, here is your show Intel. This is one of the Bibles of diabetes care, right? The Pink Panther book. This is the ninth edition from the year 2000. I think we're all very familiar with this. But the question is, when was the Pink Panther book first published? Was it 1970 1980 or 1990? Didn't didn't. Donna
Lauren Lanning 19:25
nine teen. Wait a minute. Wait a minute. It's Monica's Dr. Monica used to go seek Paperchase. Oh, and I used to work for the children's diabetes foundation who publishes the that book. I know this. Ah, it's 1970
Stacey Simms 19:50
it is it is 1970 who knew I didn't know you knew that. That's a
Lauren Lanning 19:55
thing. Do the math because Dana was died. Dana Davis was diagnosed And she's got this old and I have to do the math.
Stacey Simms 20:04
Yeah. And Barbara Davis center of course is where that so
Chelcie Rice 20:07
that free, right? Corning fiberglass marketing?
Lauren Lanning 20:13
No I think they paid oh yeah they paid for all the Pink Panther or no did they? Did they pay for it? There were there were very strict rules around how to use the Pink Panther. Well, and everything has been
Stacey Simms 20:30
okay in my, in my research, I found that the first two monograph printings were in the 60s created by a parent to their basement using an old army press and sent out for free. So kids gather round and learn how we used to use paper. Actual publication of the book was in 1970. But isn't that crazy? They did have to get they continue to renew the agreement to use the Pink Panther. I have asked many times, Lauren, maybe you can find out for us. What the heck does The Pink Panther have to do with anything? Why The Pink Panther and diabetes?
Unknown Speaker 21:06
right why Bart? Burke?
Unknown Speaker 21:09
Unknown Speaker 21:12
Stacey Simms 21:15
Yeah, and Okay, so you guys are actually tied at three points apiece Chelsea to take lead.
Unknown Speaker 21:20
Oh, my gosh. All right. You're
Stacey Simms 21:21
ready. Here we go.
Chelcie Rice 21:22
Sure. Let's go for it.
Stacey Simms 21:24
All right, the happy Bob app was released this year. It's been a very big hit. You can use it with your CGM readings, and it tells you encouraging messages. But they have since added a snarky Bob who tells you not so encouraging things, it kind of insults you a little bit. And they've added a female counterpart. What is the name of the female counterpart for happy Bob? Is it Karen, Mary Jane or Bobby?
Justin Masterson 21:48
Please be Karen please be caring.
Chelcie Rice 21:52
Oddly enough, I downloaded this app a few weeks ago. And in fact, it is Karen and I was very surprised that I was like, for real?
Stacey Simms 22:03
It is it's the it's like your annoying, annoying neighbor. I've reached out to them. They're gonna podcast like who comes up with this stuff? I
Justin Masterson 22:10
just love it. Karen would like to speak to your blood glucose manager, please.
Stacey Simms 22:14
Exactly. Chelsea, the in person at the in person friends for life conferences. And they send these out now with the virtual ones as well. They're always colored bracelets. Lauren, back me up here. Right green for people with type one orange for family members. When did they add the bracelets? Was it 2002 2008 or 2012?
Chelcie Rice 22:41
I'm just thinking back to when the whole bracelet thing first dropped because because you know what the lance armstrong thing?
Unknown Speaker 22:51
Oh, yeah. And
Chelcie Rice 22:55
I'm gonna just throw it out there and say 2002
Stacey Simms 22:59
Yes, it was 2002 had nothing to do with Lance Armstrong. Although those rubber bracelets were, you know, probably 90 Gosh, at this point. But the idea was the first couple of years. They you know, they were just trying to start things out. And then they were seeing the kids without their parents around eating. And it was like, well, who has type one and who doesn't have we've got to figure
Lauren Lanning 23:22
and when you see a kid sleeping in the hallway with glucagon or et you let them sleep because he's fired.
Chelcie Rice 23:31
They had to rule out the whole thing like just get into tranquilizer gun into tagging them like to do a wild kingdom.
Stacey Simms 23:40
Didn't my house Anyway, when they were preschool? It's much easier. Alright Chelsea I know you're a big fan of this show. The baby sitters club was a big hit on Netflix. Season Two is coming soon. The characters the character Stacy on the baby sitters club lives with type one of course very popular book series. So at the end of the episode, there were Stacy comes to terms with her diabetes. She asks her parents for a designer diabetes item. What is it? Was it I'll give you choices here. A Gucci fanny pack for pump supplies. A Gucci branded pump clip, or a Gucci cover for her CGM receiver
Chelcie Rice 24:25
shows so much
Stacey Simms 24:28
It's really good. Kids are way too old but we watched it anyway. And it was very good.
Chelcie Rice 24:34
We've been streaming Dexter for the past couple of days for
Stacey Simms 24:38
different different audiences. Yeah,
Justin Masterson 24:40
five is almost no overlap. Like
Stacey Simms 24:43
Mike we're this though. You could see where it could come in handy.
Chelcie Rice 24:47
I was gonna what was the first one you said
Stacey Simms 24:49
a Gucci fanny pack for pump supplies.
Chelcie Rice 24:52
That's what I was gonna go with a fanny pack.
Stacey Simms 24:55
And that is correct. It is a Gucci fanny pack. She does not get it. But she
Justin Masterson 25:01
does bedazzle the heck out of her pump though. And yeah, it's cool because for the rest of the series, you can see her pump like they leave it visible, which I think is really neat.
Stacey Simms 25:10
I think they did a very good job with it. I'm very happy. Yep. All right,
Justin Masterson 25:13
Stacy, did you cry when you saw that episode?
Stacey Simms 25:17
No, I cried. No, I'll tell you when I cried was the other episode when the dad like the dads falling in love and they don't know if they want him like I know cuz I have a boy with diabetes a different
Justin Masterson 25:30
kind of messed up. My daughter was cool as a cucumber and I was just fountains over here. It was a mess. I was
Chelcie Rice 25:37
like, I'm not missing anything.
Stacey Simms 25:43
All right, well, here's another one slightly different angle here. Chelsea. ominous beeping shut down the Forsyth County Courthouse. Not too far from me in North Carolina earlier this year, as law enforcement investigated a possible bomb threat. It turned out to be a diabetes device. What was it? Was it an omni pod discarded in the trash? a defense attorney with a Dexcom or a judge who let their t slim x two insulin pump run out of insulin.
Chelcie Rice 26:17
I was gonna say, what was it that was in the trashcan? You said it was an omni pod. I'm gonna go with that. I'm probably in the trashcan. Because it seems like you know, anybody's going crazy and shutting the place down ahead of in something. Because like, if it was somebody was beeping, they just like get up and run away or something.
Stacey Simms 26:33
Oh, yeah, you are correct. That was and that gave it away with the answers very good to see the deductive reasoning that interestingly, this was the second time in about three years that a North Carolina municipal building was shut down by an army i'd beeping.
Chelcie Rice 26:48
Previously, God walked through the courthouse.
Stacey Simms 26:55
That could happen. All right, our last tell our last show and tell me let me make sure there's nothing that's like, Okay. I'm not my microphone. This is our last show until a pop company had a line of toys like this, each of which was comfortable, sort of on the land or in the water. I think they also had a walrus, they had a penguin they had they would change the stuffed animal every year. The company is no longer in business. Was it? deltec Cosmo, the Animus or a Santee snap?
Chelcie Rice 27:35
vaguely remember this, but I'm thinking is second want to animate?
Stacey Simms 27:41
You are five for five matches? Yes. And Benny, the Bengal tiger. So of course I had to keep because my son's name is Benny.
Chelcie Rice 27:50
What am I Why am I remembering that? For some reason?
Stacey Simms 27:53
I don't know why you remember this thing? It's got to be seven years old. But I don't I mean, atomists went out of business officially in seventh 2017 or 2000.
Chelcie Rice 28:01
I think when we I think when I was at, for instance, that you that was like the last time anybody who's seen animals that I remember after that they just pretty much is like, you know, walked off into the sunset.
Justin Masterson 28:16
And we I remember animus is they went out of business the day after we signed up for an animist pump. Oh, so for my daughter, so she was finally ready to try a pump with tubes on it. And we were like, yeah, we signed up for an animist pump. Yep. And we and we took it home from the clinic and everything and we had just trained on it and they're like animals go out of business. We never took it out of the box.
Stacey Simms 28:37
Wow, I'm so mad at them. We love them so much. And I actually it's a long story, but they're one of the reasons why I was able to come into the diabetes community the way that I did they like my blog and I want to speaking and writing for them. And they had this they had great studies on their hypo hyper minimiser. They were one of the first you know, hybrid closed loops that were coming and then Johnson and Johnson pulled the plug. All right, we are in excellent shape. We have Justin I'm actually keeping score which I usually forget to do. Justin Lauren are tied. Chelsea is in the lead. And now it is time to move on to the bluff the listener portion of our show, and we have a real live contestant with us. Tripp stoner is joining us and Tripp you're on the road. Thanks for thanks for jumping in.
Unknown Speaker 29:22
No worries. I'm near you.
Stacey Simms 29:27
I heard so you're from Atlanta, but you're passing through North Carolina. Um, let me ask you, if you don't mind, tell us a little bit about who you are your connection to diabetes and what's up with your friends for life usually,
Unknown Speaker 29:38
um, I am a type one myself. I do a little bit of blogging here and there. I'm not as passionate as y'all are. But I've been with friends for life now for going on. I think four years. I'm kind of behind the scenes most people don't even know I'm on the staff which is a good thing. I'm just there to help whoever needs help. That's pretty much it.
Stacey Simms 30:03
Awesome. All right bluff the listener section, you have to guess which of our panelists is telling the real story of something that happened in the diabetes community.
Right back to the game in just a moment. But first Diabetes Connections is brought to you by Dexcom. And it is hard to think of something that has changed our diabetes management as much as the share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes. That is the wonderful thing about share and follow as a caregiver, parent, spouse, whatever, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow separate follow app required, learn more, go to Diabetes, Connections comm and click on the Dexcom logo. Now back to the game and we are moving into bluff the listener.
All right, so we're gonna take turns reading here. Our subject this year is diabetes mascots. And they are of course as we've already seen, those adorable furry friends have helped make type one a little less scary for pediatric patients. But honestly they can be a little bit weird. So Chelsea, why don't you go ahead and go first I'm going to give you the floor here let me let me do this. There we go. All right trip can hear us. Chelsea you're gonna read your story. And then after we hear from everybody triple let us know which is the real thing. So go for it. Chelsea. Cool.
Chelcie Rice 31:39
Alrighty, Rufus is the adorable teddy bear that jdrf gives out to newly diagnosed families. But many don't know that the bear with diabetes is named after American Canadian singer Rufus Wainwright. As a child growing up in New York, Wainwright was hospitalized with acute appendicitis. Turns out his best friend Brian was in the same hospital receiving a type 1 diabetes diagnosis. The Wainwright recovered quickly, but Brian had to stay for two weeks. Future singer insisted on visiting every day until his friend came home. Later that year, Brian's mother worked with jdrf to create a toy to help kids learn to do shots through play. By then Wainwright's family had moved to Monterey. Also, she named the bear after him to give the boat give the boys a nice way to remember each other.
Stacey Simms 32:30
Very nice. Okay, so that is our first story trip as you are listening. Keep that in mind. All right, Chelsea, I'm going to switch you out with Justin. You're up Justin, what's your mascot story?
Justin Masterson 32:43
This is a nice follow up story. So after the success of Rufus from jdrf, and Medtronic, Lenny the lion, other diabetes companies decided they needed a mascot to but what animal would appeal to kids and make sense for Omni pod? In the mid 2010, the makers of that system decided to ask their customers Insulet asked kids to come up with not just their mascots name but its species. What kind of animal goes with a tubeless pod type insulin pump. They got some creative submissions such as a dolphin and a puppy named Potter. Get it? PAWD er Potter, Omni pod chose a turtle because they say the shell resembles a pod then because turtles are at home on land and in water just like their system. The trademark for turtle Potter. That's the actual trademark was issued in 2016. And Toby was a central part of omnipods teaching app launch that year. Why is he named Toby? That's only for the turtles to know.
Stacey Simms 33:48
Mm hmm. Justin. Okay. And our third story for a diabetes mascot comes from Lauren take it away.
Lauren Lanning 33:59
Okay, Tandem is the current sponsor of beyond type one snail mail program, which of course has a cute little snail mascot. But the makers of the T slim x two pump have been working on a separate symbol of their own instead of a fluffy friend. They've decided on a bicycle built for two. That's one meaning for the word Tandem, of course, a bicycle with seats and pedals for two riders, one behind the other. Before COVID hit, they were planning to launch this as a stationary attraction at diabetes conferences. The idea was to have fun contests like how far can you and your dad pedal in five minutes? What happens to blood sugars when you hop on the stationary bike? They were also going to have children at the conferences, decorate and even put features like eyes and smiley faces on the bikes to see if it could work as an actual mascot. All right, so
Stacey Simms 34:59
trip. The question is, is the real story? Rufus Wainwright inspiring Rufus, kids picking the turtle for Toby the turtle or tandems bike extravaganza at conferences if it wasn't for COVID
Unknown Speaker 35:19
um, I believe it's going to be Rufus. If I remember the story right. She eventually set up quite a few women's sewing those bears together to hand out to other children at their local Children's Hospital.
Stacey Simms 35:35
Well, Chelsea, was that the real story?
Chelcie Rice 35:41
Let me check your email.
Unknown Speaker 35:46
Stacey Simms 35:50
The there's just enough truth in that one. Yes. There was a wonderful mom the kids name was Brian. So I apologize for sticking that in there. But Rufus Wainwright has nothing to do with Rufus the bear Justin had the real story of Toby the the turtle although I've got to say I wish and Tandem for a licensing fee you can have that idea from me for and I wish your idea was your story there was true I love that one.
Justin Masterson 36:18
It does remind me of the the contest that they had to name the the boat and they named it boaty mcboatface. So I think they got a lot better with Toby the turtle they
Stacey Simms 36:33
will chosen for that for fooling everybody.
Chelcie Rice 36:37
They change it to Rufus our freight train Jones.
Unknown Speaker 36:40
Oh, like that
Chelcie Rice 36:41
real wrestling fan out there. You know? Yeah. Old School wrestling, you
Stacey Simms 36:46
know. will trip. Thank you so much. That was a lot of work. I know on your part to join us. But we appreciate you dialing in and making it work. So thank you so much for playing.
Unknown Speaker 36:59
Thank you. Y'all have a good day. It's great to see all of y'all.
Unknown Speaker 37:03
You too safe drive and travel.
Unknown Speaker 37:05
Stacey Simms 37:08
Greet job, everybody. That was funny. All
Justin Masterson 37:12
right. I love these stories. They were really well written.
Stacey Simms 37:15
Good art. Thank you. That's my favorite part of doing this. The hardest part is just coming up with the object after that. It's easy. Yeah. But man, thank you.
Lauren Lanning 37:24
All right. Thank you, OSU. We'll be showing you some royalties on that. How could you not
Stacey Simms 37:28
do that man at the conference? That's
Justin Masterson 37:31
such a great idea.
Stacey Simms 37:33
I'm sure. I'm sure their marketing team has thought of it and dismissed it.
Justin Masterson 37:38
Somehow buck off diabetes got through.
Unknown Speaker 37:41
Chelcie Rice 37:43
Really, really bad ones.
Stacey Simms 37:53
are moments people have got a deadline people? Oh, all right. So finally, we are moving on to our limericks now I will read a Limerick to each of you. If you complete it correctly, you will get an additional point. So the topic here is people with diabetes on reality television. So the the answer and I shouldn't give you too much information here. But I think I'm a terrible Limerick writer. So I will tell you that the answer I'm looking for is the name of the show. All right, so Lauren, we're gonna start with you. I apologize in advance these are really bad. I you know, when I learned that on Wait, wait, don't tell me they have like a guy who works on this all week long. He's I don't know if you're not but he's Yeah, but that's what he does. So forgive me. There we go. All right. Remember these reality shows where people with type one appeared. More in this show could be called the CO ket. And a crowd of contestants. Well met Michael among the poor schmoes who didn't get that rose desert he said no thanks on the bachelorette. Yes on the bachelorette. I know the rose gave it away. But Michael apparently was a contestant with type 1 diabetes on a season of The Bachelor. I think it was 2013 I don't watch that one. All right, Lauren, point for you. Excellent. Chelsea, this one's for you. This show is all over the place. With contestants who rarely embrace. Matt came in first, Leo. Well, he's not worst. It's a long road for
Unknown Speaker 39:37
The Amazing Race. The Amazing Race.
Stacey Simms 39:39
Yes. Dr. NET strand, one that a few seasons back and Leo is currently a contestant. Hopefully by the time this airs, he will still be on the show. And not out of it yet. So and Leo has a really we talked him for the podcast he lives with type one word, exactly type one but he head was born with hyper hyper insulin ism and had to have most of his pancreas removed. And then he lived pretty normally until he was 19 when he developed diabetes, but we all spotted his Dexcom on episode one. And I tracked him down. Got him on the show. All right, Justin, this is for you. Ready? This competition for fame? features cyclones and Rams and some flames. Chris trained round the clock. Got a hug from the rock. We spotted his decks on
Unknown Speaker 40:35
okay, I can do this.
Stacey Simms 40:37
This is probably the hardest one sorry,
Justin Masterson 40:39
the rocks on it. There are flames involved. Uh, the Titan games?
Stacey Simms 40:45
The Titan games? Yeah, the right route. And yes, Chris Rutan competed. Yeah, Season One of the Titans.
Justin Masterson 40:51
I remember that episode. That was like the one that my daughter called me downstairs to show
Stacey Simms 40:55
me and got a big hug from the rock. Yeah, that was very nice. All right. So we have totaled up the points, which which don't matter for pride. Chelsea is the winner. But everybody gets a prize. Everybody gets a prize. It's just
Justin Masterson 41:10
for Michelle, did I come in dead last? And does Michelle somehow get punished for
Unknown Speaker 41:14
no actually tie
Stacey Simms 41:18
it all around. So in summary,
Unknown Speaker 41:23
Stacey Simms 41:25
Caitlyn, coming in for a tie for second with Michelle. And fee and Chelsea are the winners. So congratulate all around but it's really well done. Really, aren't we all winners though? And it comes right down to it.
Justin Masterson 41:44
I'd like to think so. But some of us are technically and more accurately winners. And that's Chelsea.
Stacey Simms 41:48
Well, some of us will find out for winners. If we find out if the show. In the couple of minutes that we have left. Let me just go around and say a thank you. And maybe just give you guys a little bit of a last word. Lauren, you have been amazing keeping the muffles going and everything had friends for life. How's it been for you this year? Are you enjoying it? Is it just more work for you?
Lauren Lanning 42:11
I know i'd love it. I'd love the connection. I didn't think that a online would still have the same feel. But it's great connecting with my muffles every other week and hope everyone can join us.
Stacey Simms 42:26
Excellent. And Justin, um, you know, I can't imagine it's easy doing this quarantine thing you know, as you were with your family and your daughter was one I know it's not easy for any of us. Anything I see a guitar in the background, what are you doing to keep busy?
Justin Masterson 42:39
Yeah, I'm doing a lot of this. A lot of playing music. And I've been one of those folks who has dug into you know, a little bit of cooking and a little bit of fixing the house and I'm not making soap like Chelsea, but I'm doing my very best with what I have. And I'll put in a plug for the dads group. We love being able to run the dads group at friends for life. And if you're not already a part of it, and you're a dad, we'd love to have you I have had some of the most moving experiences of my diabetes journey at the at the men's groups and when amazing questions and amazing learning and then just a lot of camaraderie which I really appreciate.
Stacey Simms 43:19
It is such a gift for all parents to be involved in things like that. It really is a gift for your child's if you're dead thinking about it. You've been reluctant because you know, are your manly man, guys don't do that. Please do that. It's wonderful. Justin, thanks for bringing that up.
Unknown Speaker 43:31
Stacey Simms 43:32
Chelsea, where can we buy your soap? I'm not kidding.
Chelcie Rice 43:37
No. I mean, you can follow me on like, what Instagram type one comedian type tip number one comedian, Instagram because I'm always, you know, posting pictures on there because of just for the heck of it. I'm not really you know, trying to sell but I'm right, because I don't have like a business license or anything. And you got to have insurance when you're selling something that you're gonna rub on your body and then cause somebody like to lose, you know, you know, something, they made some organ that they may need something like that. So I'm willing to like you just pay me to ship and I'll send you some soap. It's no big, big whoop.
Stacey Simms 44:13
And I have to ask you, is there anything that you've made? That's been more interesting? I've seen a couple of things that you've called disasters that I still think are beautiful.
Chelcie Rice 44:21
Yeah, I mean, there was one that one of the things that happens when you you mix the lye water into the oil sometimes if you add some additives like fragrances, they react differently. And one that I put in there just like turned it didn't look like cottage cheese. And I thought it was like oh well and so but I put it into the mold anyway and I colored it with a little orange and little yellow. And when I when I when it's solidified it looked like Colby cheese. And so I mean like and the funny thing is they turned out to be really good soap is a really good hand soap. I don't know what to put in it. Oh What you know percentages, but it comes out to this really nice handsoap that doesn't leave your hands all stripped. And I was like, Okay, great. Now I don't know how to do it again. So, memories.
Stacey Simms 45:14
That's a great trick, but I can only do it once. Yeah. All right. Wonderful. Well, as usual, we got off topic of diabetes. But thank you all so much for joining me on this for another edition of Wait, wait, don't poke me. And maybe we'll do it again sometime. But thank you all so much for being here. I hope you enjoyed it and had a couple of laughs
Unknown Speaker 45:33
Lauren Lanning 45:34
It was fun. Thank you.
Unknown Speaker 45:41
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 45:47
I love doing the game show episodes, there's so much fun to put together. I would do it every week, if I had the time. And if I could come up with that much diabetes trivia. Anyway, you can listen to our previous weight weights at Diabetes connections.com there is a very robust search on the website with more than 340 episodes. Now, we really want to make it easy for you to find what you want. So you could just search weight weight or game show this past summer at friends for life. I did a Hollywood Squares because zoom just looked like that to me. So I did Hollywood Squares for the game show but you can find all of that and much more over at Diabetes connections.com Thank you to my editor john Buchanan. So for audio editing solutions, and thank you so much for listening. I'm Stacey Simms. I will see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
This week, the perspective of a diabetes dad. Tom Karlya has become much more than that since his daughter was diagnosed in 1992 and one of his sons in 2009, with many efforts extending through all parts of the diabetes community. But he says it all comes back to family.
We’ll talk to Tom about his story, his efforts with the Diabetes Research Institute – the DRI – his acting career – and much more. Tom is a tireless advocate and if you’ve never heard him speak, we promise you’ll be inspired.
In Tell Me Something Good – college sports, school scholarships and a young JDRF advocate answers Stacey's questions.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is diabetes connections with Stacey Simms.
Stacey Simms 0:26
This week, the perspective of a diabetes dad Tom Karlya has become much more than that since his daughter was diagnosed in 1992. And one of his sons in 2009. With his efforts extending through the community, but he says it all comes back to family.
Tom Karlya 0:45
Communication is the most important thing. And for the for dads to realize, to look for places where you can pick up the ball and run with it, where you can be part of your child's life. Don't let your wife do it. Make yourself part The solution
Stacey Simms 1:01
will talk to Tom about his story, his work with the Diabetes Research Institute, his acting career, and much more. Tom is a tireless advocate and if you've never heard him speak, I promise you'll be inspired in Tell me something good college sports school scholarships, and a young JDRF advocate answers my questions. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I'm so glad to have you along. I am your host, Stacey Simms. We aim to educate and inspire by sharing stories of connection when it comes to type one diabetes. My son was diagnosed just before he turned to 13 years ago. And I know there's an awful lot of stress in all our lives right now. This is a difficult time to say the very least. I'm not going to fill you up with a whole bunch of cliches here, but I do hope That as you're listening, you do know that even if it's online, the diabetes community is there for you. We're here to help. We're here to share stories. Hopefully your local community is banding together. I'll talk about that a little bit later on in the show. But this week's show is not going to be about COVID 19. It is going to be about some inspiration.
You know, with everything that's going on, I thought it would be really nice to have something like this. Tom Karlya and I actually spoke a while ago. And while I was listening back to this interview, like I do all the interviews, it struck me that it sounds a bit like a keynote speech that you would hear at a JDRF summit or another diabetes gathering like friends for life, because all of those conferences have been canceled. I really thought maybe this would make you feel like you're hearing a speaker at a summit. Right? So let's listen to it. Maybe in that vein, and if you're bummed out like I am that those conferences have been canceled. I mean, let's face it, they are for education. They're for learning. They're for resources, but they're also just to get together and see friends, right? You know, maybe this podcast or the Facebook group can be some support for you a place to hang out. So you can always email me Stacey at diabetes, connections calm, or jump into the Facebook group, which is diabetes connections with the group. I
know that diabetes makes us tougher to begin with, right? This is such a great community. And we do know how to help each other out because we do it all the time. Right? I think we're seeing some neighbors come together in the greater community, at least if where I lived, you know, do you need this? And can I go to the grocery store? People with diabetes, have been doing that for a long time. So let's just not stop doing it. Now. As you'll hear Tom say, as he has said for many years, you just don't do nothing. You can do a little something and really help.
And we'll hear from Tom in just a moment. But first diabetes Connections is brought to buy One Drop. And you know, I spoke to the people at One Drop and I was really impressed about how much they get done. Diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need get 24 seven coaching support in your app and unlimited supplies delivered, no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to diabetes, connections comm and click on the One Drop logo.
My guest this week was brought into the diabetes community back in 1992. When his then two year old daughter Kaitlyn was diagnosed one of his other children he has two other sons would be diagnosed 17 years later, but Tom Karlya jumped Writing to see where he and his family could help taking part in early JDRF campaigns, the Diabetes Research Institute and children with diabetes. I think Tom vo would tell you the best thing about him right now is that he's going to be a grandfather. The news came after we had spoken for this interview already, but his daughter Kaitlin, and her husband Andre, are expecting later this summer. And yeah, that's the Kaitlyn diagnosed as a baby herself basically back in 1992. Here's my talk with diabetes dad, Tom, Carl. Yeah, Tom, thanks so much for joining me. I cannot believe that I'm just now finally talking to you for the podcast. I appreciate it. I know how busy your schedule is.
Tom Karlya 5:42
Wow. They Thank you, to you. I mean, it's it's you know, I guess they say when people are busy, they're busy. And those are the type of people we like to hang out with. So I know how busy you've been, how busy I've been, and now the twain has met. So that's terrific.
Stacey Simms 5:55
So much to talk about here and I want to talk about your you know, your experience. ances over these many years, but let's start by, you know, your work with the Diabetes Research Institute foundation. Do you mind telling us, you know, for people who may not be familiar, what is that?
Tom Karlya 6:13
The Diabetes Research Institute in the foundation is is has support for the Institute. It is all the money that the foundation raises goes to the Diabetes Research Institute, which is an 87,000 square foot building that sits on the campus of the University of Miami about 35 years or so ago, when the Diabetes Research Institute foundation first began by a group of parents like many of the diabetes organizations that are out there, somebody there had a connection to the building and construction trade union. And that gentleman said, Why don't we try to raise more money for you. And during June on Father's Day weekend, they created debt, dollars against diabetes and they stood on street corners around the country with buckets and they collected change from anybody at the stop. The lights, etc, etc, etc. And they continue to do that. So they had enough money, and they raised like $14 million. And they took and they built the Diabetes Research Institute, which when it came time when the building was done, the foundation said, Let us name the building after you and all the terrific people of the building trades unions, and they sit down and they say, let's just put a plaque on the wall that said this building built by the hands and hearts of Americans construction unions, and that plaque is still there. It represents a beacon of hope nobody expected it to become the research center that so many organizations, the wonderful organizations out there, the JDRF the ADA is the National Institutes of Health. They fund us We are the scientists doing the work at that center,
Stacey Simms 7:52
and d-ri to be clear if people are not familiar. The work that Dr. II does is cure, cure focus research. Right,
Tom Karlya 8:00
secure focused all the stages of research, basic preclinical and clinical happen within one building. A lot of time in academia, you come up with a finding, then you have to go someplace else to find somebody to collaborate with, we go from one floor to the other floor to the other floor. And our saying is, if we can't move it up, we move it out. Because funds are so limited, we have to make sure that we stay focused on that supply, sustainability insight, which is the three main pillars that we look for, to cure this disease once and for all. And there's also a d-ri Federation, we share all of our information, we hold on to none of it, and we have federations around the world for that matter that we share information with because in Italy and in China, they can do the research a lot cheaper than we can do here. So a lot of times we'll test things out there, then bring it here and follow through the steps of the FDA that are set, etc. to try to get it from the bench to the bedside.
Stacey Simms 9:00
It's so interesting when you kind of dial down and look at how these things work. And I know that as some people are listening, they may be thinking, well, if it's so cure focused, and it's been around that it's funded, you know, how can we don't have more progress? How can we don't have a cure?
Unknown Speaker 9:14
I hate to put it in such simple terms. But
Unknown Speaker 9:16
can you talk a little bit about some of the progress that has been made?
Tom Karlya 9:21
Yeah, that's, you know, I said this before, that's your mouth to God's ears. That's been our hope since the beginning. And it is such a complex disease, and all the wonderful organizations out there as well as the research centers out there. This is just not an easy disease to figure out. I mean, years and years ago, when we first it would there was nobody funding research years ago for type one diabetes, and then to go out there and say, well, we're going to try to cure it. Well, as we went along, and as many other organizations that have, in their wonderful ways have funded our work and work around the world for that matter, have found out just how calm Flex this disease is years and years ago, we were actually told we were one of the first centers. And actually Dr. Kamila, recording our scientific director. He invented the machinery with a board member, Ramon Poe, who donated all of this time, they created the machinery to separate the islet cells from the pancreas when they get donated, and we give that to anybody around the world just to help them try to move it forward. But nobody knew that taking islet cells. So this is interesting, because I've been at this for 26 some odd years since my daughter was diagnosed at age two. And there was a time when people thought you will not be able to take islet cells, insulin producing islet cells and down years later became trying to re engineer stem cells and things to create insulin. There was no proof out there, that you could take islet cells and put them in another body and they would work well. They Did and I have and what's happened since that time is that as we move science forward, you know, I think we should do everything we can to try to figure out how do we make islet cells produce insulin in another person's body without being attacked? And why so many of these are immunosuppression drugs. You know, when we first started, people would say, Oh, yeah, but there are immunosuppression drugs. What people need to understand is that when it came time for the scientific studies, the quality of life of people who entered these research projects, they became patients for the clinical trials, they had no quality of life, because they could not feel going hypoglycemic. They could not feel their blood sugar going low. They couldn't drive, they couldn't hold jobs. They be talking to people they just kill over. So for a lot of these people, this first islet cell transplant became lifesavers because their quality of life was just not existed. something interesting happened when we did that. And around the world, this was done to a lot of different centers and not just at the d-ri, but we were at the forefront of it. And the interesting thing about it, even patients that went back on insulin, for the most part, not in every case, but in the majority of the cases, probably even excess of 80%. But that's just my layman's guess. They're hypoglycemic reactions went away. Even if the islet cell transplant did work, and they had to go back on insulin again, they did not suffer from the hypoglycemic episodes that they had. It has always been this great moving science forward. But the truth of the matter is, is that we will continue to work and I and I was active, I was doing other things when Caitlyn was first diagnosed. And for those who don't know the story, I was an actor for years. I was in a show in New York for for 1314 years talk about that. And we'll get to that and I've done a lot of great things, but I was on my way to a matinee performance when my beeper went off you tell people about beepers like What's that? And it just was said 911. And I went over to the phone, I can tell you right where it was, I remember to this day, I went to hold off of the of the bridge and the Lancey street in New York City. I went to a phone booth, for those who don't remember phone booths or things that had a phone in it. Right. So I called home and my wife said, Tom, I have to rush Caitlyn to the hospital. They think it's type one diabetes, and she had been sick and she had the flu. And, you know, again, it was everybody thought it was something else. And when I got to the hospital, which took me two hours, that was a whole episode in itself. I saw I looked down the hallway and I remember my wife Jill had Kaitlin's jacket was hanging from her hands. And we just looked at each other and I went in and Kaitlin had all these wires and everything attached to her. And I pushed the hair out of her face and I said, Hi honey, and she said Daddy, and she looked at everything she was attached to and she looked me square in the eye and She said,
and it stuck with me. I remember it every day when I start my day. That was a promise I gave my daughter. And I became, you know, whatever. I became an advocate and constantly working at it. And then I got really, really angry because I thought my reward was 2009, my 13 year old son was also diagnosed. So I was pretty angry. And that was also four days after my dad died. So when someone tells me they had a flat tire at a supermarket that week suck, they said, Oh, no, no, I can beat that.
Well, so an X and here we are, you just
Stacey Simms 14:35
have your two year old daughter looked you in the eye and say daddy fix to something that there is no fix. I don't want to make you relive that moment. But when your son was diagnosed, and that was Rob is diagnosed 17 years later, the change in the diagnosis. I know it's not a fix. There's no fix yet, but what was your perspective at that time because the diagnosis had to be different and the care had to be different.
Right back to Tom answering that question in just a moment. But first diabetes Connections is brought to you by Real Good Foods and there is something new from Real Good Foods. They have ice cream. Oh my gosh, real good ice cream. My whole family tried it. We have our favorites. I'll share a little bit more specifically down the road. But oh my gosh, the vanilla is delicious. That's the first one we tried right because you can't hide anything with just a vanilla. So we went right to that. I mean they have other great flavors. They have mint chocolate chip, they have chocolate, they have peanut butter chocolate chip, and we started with the vanilla and it was really good. It tastes like real ice cream because that is what it is. You can find out more at the website and preorder. It's available in select stores. As always, there's the store locator on their website, find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now, back to Tom Carl. Yeah. And he is answering my question about how different it was when his son was diagnosed with Type 117 years after his daughter.
Tom Karlya 16:13
Wow, you're absolutely right. And again, the tools, I always use that phrase, the tools that our diabetes toolbox for our kids has become so amazed, we used to have to wait 90 seconds. After we put Kaitlyn at that time, we couldn't even do our fingers. We had to do her toes. So we get a blood drop on a glucometer. And then we would wait 90 seconds. See if I could help everybody understand one main point that get diagnosed today than when not only 2009. But 1992 when Kaitlin was diagnosed, that the tools we have now are so far advanced. We always say when we try to get our children to live normal lives, you literally can live as close to a normal life as you can accept and there's a huge death there is your child. Type One Diabetes. But for those who have it understand what I mean that with the technology we now have, there was no, Caitlyn was the second child on Long Island to go on an insulin pump. Wow, could you imagine people don't realize that these things were the size of backpacks when they started these. I mean, it's not, you know, like an astronauts backpack, they were huge, but they got smaller, they got better, they got quicker. And that's why research to me, that's why I will never give up hope. Somebody looked at somebody checking their blood sugar, and they said, We can do better with that. And we have, and it's the same thing with research as long as there's a research center. And for me, this is just and everybody else can find their own place where to give their time and energy, but the Diabetes Research Institute, the fact that they are focused now that's a very interesting greement to have with academia, that we are focused on curing type one diabetes, and when we do that many of the patients type two patients for an insulin We'll probably benefit from that as well. But our focus is to cure this disease. As long as there's a place like the d-ri that focused on curing this disease, then I will never give up hope.
Stacey Simms 18:11
My question on that you said something very interesting. You said it's a very interesting agreement to make with academia. Do you get pushback from people who want to do research, but it's not cure focused,
Tom Karlya 18:22
we get not pushback, but we get increased from any university has the right to do and the University of Miami and we have to be honest, as you know, it's such a wide range University. It's got so many different aspects to it. But when they come to us and they say, look, can we look at looking into the type two type of research? Well, we tell them to go to another part of the campus and look for it. And they do. There are places probably on us campus that will focus on complications, you know, transplants they have, you know, they have a lot of different aspects of us, because it is such a great medical campus on a lot of different ways and areas that they can go someplace But when it comes to the Diabetes Research Institute, we have an agreement with them that that's where that focus will say. And a part of that is, in essence, the Diabetes Research Institute foundation is the largest donor to the University of Miami for all the money that we give only to the institute because that's all we'll fund. It won't go anywhere else. And that's because the foundation years ago, the parents had the, the, the wherewithal to say down the line, we want to make sure that this institute stays razor focused on a cure. And that's why that agreement is so important to be in place and we love being part of the University of Miami. They've been very supportive of us. It's a great relationship. And it's been incredible because it also being part of the University of Miami. It gives it the credibility that the world needs to see that this institute is part of academia, but also has raised focus on curing a disease that is only for type one diabetes.
Stacey Simms 19:58
Tom, you're handled your blog. Dave has always been diabetes dad, and I want to talk to you about being a dad for a moment if I could, you know, you've spoken many, many times in your blog. And when you speak in person about your wife, Jill, and how she took care of the kids diabetes, you said it, you know, really the responsibility mostly fell on her that sort of thing. You've given her a lot of credit. But I'm curious as you look back and your kids are grown up, and they're married, and you know, you have a different perspective. Now, what's your advice to other diabetes dads, you know, I think more men want to do more. I don't know exactly how much you did. But can we talk about being a diabetes dad for a minute and what that means?
Tom Karlya 20:36
Sure. And then, and just to be clear, and this is very important part of this discussion, the responsibility did not fall on jail. And actually, when Caitlyn was first diagnosed, we sat down and talked, because I didn't want to make the decision for myself. I didn't say, Well, this is what we're going to do. So she and I sat down and I said, Look, one of us has to stay home. And it was Okay, I didn't say, Well, I'm going to work, and you're going to stay home, we discussed that. And to me, that's one of the biggest keys to parenting with diabetes is keeping that open line of communication and dialogue open. I look at now, I mean, I mean, there was a time, we almost lost everything. Because she couldn't work. I had to work. I was working three, four jobs, whatever it took to keep us moving forward. I knew two things. Income had to keep coming in. And we had to have insurance from that day forward. So everything I did was working toward that. But it came about that I would work the jobs, and she would stay home with the kids and she would work when she could if she could, and then it became we had to find times that I had to realize that this is a partnership and dealing with this disease. So I would say on the days that I could get out of here go someplace, go see a movie go out with friends, we had to try to find time for ourselves as a couple. This is a very strenuous disease and a lot of different areas. And I tell couples and parents all the time, communicate, make sure you're talking with each other, not at each other. You know, I have to tell you one of my favorite stories. I was at the children with diabetes conference in Orlando, Florida. And I usually run the dad's group when I'm there. And there was a man talking and he said, I'm divorced, and this that the other thing, and he said, and I'm here, and the man next to him said, I'm in a second family. I married my wife, and they have a child with diabetes. And it was the father of the child and the new husband of the wife at the same meeting, finding it that important to learn about diabetes. And that was one of the most touching things I ever saw. I said, I wrote to the gentleman who was newly married, I said, You're like my new hero.
Unknown Speaker 22:55
Wait, wait, wait, I'm confused. So the family gets divorced. The EX is there and The new husband.
Tom Karlya 23:01
That's exactly right. Wow. And, And to me, that's as powerful a statement as that could ever be made that the child has to come first. And look, divorces Can I hope never to cut through it and I hope never to have to deal with it. But sometimes it can be very bitter. But you have to remember where your child is with diabetes is the same thing when both parents go to work. And the grandparents want to be involved. I say this all the time, grandparents are the most forgotten people when it comes to the family structure and dealing with diabetes because they want to help. But a lot of times it's like mommy telling the son or daughter what to do. And that kind of, they don't get accepted in as they should. But the grandparents hurt as much as the parents do, if that could be possible, because they want to help and we have to let them and find the mechanisms for them to do so. So the answer to your question is, communication is the most important thing and for the for dads to realize To look for places where you can pick up the ball and run with it, where you can be part of your child's life, don't let your wife do it. Make yourself part of the solution. And you will be. And that's exactly what we did. And because of what I ended up doing for my life, I ended up being the go to person for what was new in technology and what was coming down the line, and you was dealing the day to day management. But that's the balance. You will get to the late Richard Rubin, who is just an incredible, incredible man in the world of psyche of diabetes. He's the one who coined the phrase, diabetes, self willfulness. And it happens to all of us. And it's all about balance. It's all about choices. Such great advice there.
Stacey Simms 24:41
All right, Tom, I got to ask you, you mentioned this earlier that you were acting and you you were on these TV shows, but you were in Tony and Tina's wedding. For people who might not be from the New York area. You're from Long Island. I'm from Westchester County, which is really close by. This was not only a show This was like a party. Can you try to describe Tony and Tina's wedding?
Tom Karlya 25:04
Yeah, it's what's called Point to Point improvisation. The same things would happen every night. But basically, you went to a church in New York City, and then the service would end and you would walk three blocks to the catering Hall. And that was in snow, rain, whatever it was, and it was anything that could go wrong in the wedding would go wrong. An old boyfriend shows up. The father is divorced and is going out with this very interesting woman who, but he used to go out with Tina's mother. It took the whole thing just becomes a mess. But it at the time when it first opened. It was probably the first show that was all about improvisation. Now there's many of them, but they had they been in every city just about in the country and what some of them with long runs like Chicago ran for a really long time, as well. But it was a role that was very interesting for me. I played tennis. Over the years, I ended up doing four different roles. I ended up playing Tony's Father, I was a teenager. Father in the host of the catering Hall and he was like this kind of emcee which saying, tell jokes, whatever. But it was all about the engagement of the audience. So we, the audience, were the guests of Tony and Tina, every night, and we would have to interact with them. And the key to that was to listen, because you could pick up something and then come back to that person later and bring it up. And they're like, how did they know that? And it made it all like they were part of the family. And I mean, there was a time when all these celebrities came and it was it was one of the one time it was probably one of the hottest tickets in New York. You couldn't get tickets yet to wait two months. Kim can't imagine it was the Hamilton of the day but it certainly was a great show and the audience had a wonderful, wonderful time.
Unknown Speaker 26:45
Did you have fun doing that? I mean, I imagine it was it was very hard work, but it had to also be very kind of exhilarating in a way.
Tom Karlya 26:52
Well, it was an active job and it's probably one of the most Yes, exhilarating and and challenging to stay in character mind. came to see the show. And I didn't talk to anything else, but my character. And so it was always fun to make sure that at any given time that we had to stay in character no matter what power failure happened once and we all had to get out of the theater. Well, we all I mean, we met this is like leaving a catering all these people all sitting around tables all around you. And we all had to stay in character when we did that. So it was a challenge. It was fun. But yes, it was a job that you had to be able to stay in every night. You had to pace yourself. I mean, there was a time we were doing eight shows a week. And that's a lot of shows. So it's like any training that you do in the acting world. you train yourself to do the role, because you tell yourself every night that people seeing the show are seeing it for the first time.
Unknown Speaker 27:44
So before we let you go here, give us an update on the kids. The grown up kids now How's everybody doing?
Tom Karlya 27:51
My oldest doesn't have it. TJ he's with the New York state mental health police department. Kaitlin now interesting thing about Caitlyn as I remember you Years and years ago, someone told me you really should just hope for college for your kid. And I said, What are you talking about? You mean she's not gonna make college? He said, I'm not saying that he said, it's just you have to understand how devastating this diseases but make college a goal. Well, that person didn't stay a friend clearly. So,
Stacey Simms 28:17
but but that was a belief at the time people I've heard Well, it was thought that
Tom Karlya 28:21
Yep, yep, yep. And I think that's one of the keys for all of us is to keep our kids so positive that they can do anything with this disease. So not only did she graduate college, not only did she graduate nursing school, but in December, she graduated with her nurse family practitioner ship, and she's now a family nurse practitioner, and she's in practice and she'll be hopefully her goal is to deal with people with type one diabetes. My youngest son is a computer guru, and he was working for a company called Best Buy. And he got tagged by their Geek Squad when he was 18. And I said, Do you like it? He said, Yeah, dad, but that's not where I'm going to stay. And I said, What do you mean? He said, My goal is to be tapped from the Magic Castle. I What's the Magic Castle? He said, it's the corporate headquarters in Minnesota. I said, Well, that's a lofty goal. He said, Well, that's my goal. Well, earlier this year, my wife and I went, saw my son's new office, at the executive row in Best Buy in that building, that they are all in and looked at his new office, because they did just that when he was 21. They tapped him on the shoulder and they bought him out there. And he now works for the corporate headquarters for Best Buy Geek Squad. Now I share that not just because of who they are. But if you have a dream, if your child has a dream, our job as parents is to do everything we can to help them fulfill their dream. That was my son's dream. She's been there now for two years in Minnesota, doing just what he always wanted to do.
Stacey Simms 29:46
That's just wonderful. I mean, I'm getting kind of emotional. Actually, as you're talking about it. I think it's incredible, because you have to let them pursue what they want to let them dream. And when Type One Diabetes comes along. It's kind of easy to think to yourself, Well, maybe We should damp down the expectations. And you didn't do that for any of your kids. And your mantra has always been at least since I've known you is just don't do nothing. So for people who are listening, you don't have to, you know, be a senior vice president of the Diabetes Research Institute. You don't have to you speak all over the country like you do. But as we leave here, is that really your advice? Just do try to do something.
Tom Karlya 30:26
It started with a step. If you told me back then that I'd end up where I was today. I would have told you you're crazy. Start with a step. If you're looking for something to do hang posters around your community about the warning signs for diabetes. There's a mom in texas a mom in Texas, she and I connected years ago and created get diabetes, right. org and all that is is posters that you can download and put around your community for people to know about the warning signs of type one diabetes, and we're not alone. Beyond type one does it all bunch of other people JDRF does it all People have these warning signs. It starts with you looking in the mirror saying the status quo of diabetes in my life just will not do. What can I just start asking the question, What can I do JDRF started by parents. The Diabetes Research Institute foundation started by parents, people out there doing things, podcasts out there, Stacey Simms says, gotta do something. This is my background. This is what I can do. This is what I'm going to do. It's something there's nothing so small, that cannot change a life a life around, just by starting with the first step. This disease will not do in this world, my world, or any world, and look for something you can do to change it. Tom,
Unknown Speaker 31:48
thank you so much for joining me. It's been such
Stacey Simms 31:50
a thrill to hear your story and to talk to you today. I really appreciate
Tom Karlya 31:54
it now. Thank you and thank you for everything you continue to do. And these are the stories that people need to hear because there's a A lot of people out there who don't know that what they can do and how they can do it and, and that's what people need to just keep hearing these stories so they get, you know, there's so many people out there that is so inspired now, and professional sports and dance and drama and theater in studies in school, excelling, diabetes just won't do and just don't do nothing when it comes into your life.
Unknown Speaker 32:26
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 32:32
You can find out more about Tom at diabetes. Connections calm is the episode homepage. Of course, I will link up information to his blog to the d-ri to everything else we talked about and there is a transcription just like there is for every episode this year. And I am working to fill in the blanks on transcriptions in the past as well, because I'm getting such a great response. I wasn't sure right? Do people want transcriptions? Is it worth the time? Let me tell you, it is totally worth it. I've been hearing So many people who maybe just don't have time to listen or prefer to read. And it's a service, I am more than happy to provide as frankly, the technology is getting better. It's still not perfect. I mean, you know, most of these transcription services do not speak diabetes. So I've had to go through and fix a few things. But I'm happy to do it. Because I think it really is enhancing everybody's experience. So thank you very much for the feedback on that. Up next, tell me something good. But first diabetes Connections is brought to you by Dexcom. You know, when you have a toddler diagnosed with type one, like I did, like Tom did, you do hear rumblings for a very long time about the teen years, but when it hit us at full force a little early, frankly, I'm so glad we had Dexcom it just helped us see and really take stock of the changes we made because Benny's insulin needs started going way up around age 11. And he's 15 now and it's almost settling down. I don't wanna get too personal, but you know, along with the hormone swings, I can't imagine managing diabetes during that time. Because we made so many changes without the Dexcom continuous glucose monitoring system, we react more quickly to highs and lows, see those trends and adjust insulin doses with advice from our endocrinologist and I know using the Dexcom g six has helped improve Benny's a one C and overall health. If your glucose alerts and readings for the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to diabetes connections comm and click on the Dexcom logo.
Our Tell me something good stories this week come from a Facebook group called poked parents of kids experiencing diabetes. I'm part of that group and I posted that I was looking for good news stories and oh my goodness, did they deliver so let me bring you a couple. Sarah wrote my daughter just signed to play college soccer. She is so excited to keep breaking down misconceptions about type one and sports Susan says my daughter with Type One Diabetes earned a scholarship and direct admission into a competitive nursing program. She's in her freshman year living on campus and successfully handling it all. Her goal is to be a diabetes educator. And then Beth wrote in this kiddo, Frankie, who has lived more of her life post type one is rocking control IQ the new software from tandem best says slightly off label since she's barely six and definitely under 55 pounds and just got invited to present on a panel at JDRF type one nation in Denver. That was a couple of weeks ago before everything was canceled. But I asked Beth to ask Frankie Yes. And she was on a panel. I had some questions for her. And Beth was happy to oblige. And Frankie answered my questions. So my first question was, what is one thing she would tell a kid her age was just diagnosed with type one, and Frankie said, I would tell them it's okay. Don't be afraid and you can still do everything you want. And then I said What's something she does to feel better when she has a hard day, and Frankie responded, I tell my mom and dad when I've had a bad day, then we usually do something special together to make me feel better. Again, Frankie is six years old, and she was diagnosed at two. But thank you so much for sending that. And thanks to all the parents for responding to my prompt in the group, I really appreciate it. If you have a Tell me something good story you just want to share about your kid or yourself. It can be everything that you heard, it could be a diversity, just you know, with everything that's going on. Let's have some good news in our community. I love it. It's my favorite part of the show each week. I really would love to hear from you. Before I let you go, just a quick note on everything that's going on. I mentioned at the beginning of the show that I was going to talk a little bit about local groups. And all I really want to say about that is if you have a local Facebook group, as many of us do, you know, just check in on each If you have a local text chain or WhatsApp or things like that, maybe your kids have a diabetes camp, I don't even know what kids are using. I was gonna say whatsapp group, but you know, you know what the kids are on tik tok or whatever. Check in with their camp community or other people you may know through your local JDRF chapter. If you're an adult with an adult group, please check in on each other. If you have nobody. If you're concerned, you're by yourself, you're worried we're here, right? I don't know what we can do other than say, we can help. I don't want to make empty promises. But I do think it's really important that we get social connection during this scary time, which really can lead to in real life help. I know that in my community, when somebody needs insulin, we get it to them. When somebody needs a Dexcom sensor. We get it to them if we can. The diabetes community for a very long time has already taken care of the people within it. And I hope that that spirit extends to the whole community during the scare both At the very least, if there are people in your diabetes community that you can help, let's find a way to do so, you know, if you're halfway across the country, there are so many ways to connect, that it's really not that hard to find somebody nearby. So hey, diabetes connections, listeners, that's my challenge for you over these next couple of weeks. I know most of you are already doing it. But if you've listened this far, if you're hearing my voice at this point, check in on your diabetes friends, check in on your community, and let's see what we can do to help each other. We may never need the help, but it is nice to know it's there. I think that goes an awfully long way. All right. Again, I don't know what I'm doing in terms of scheduling for the next couple of weeks. I'm not going to do lots and lots of coronavirus episodes. I don't know that they're needed. I think I will check in if I can with some endocrinologists over the next couple of weeks. Maybe we'll do some Facebook Live. You tell me what you want to hear. But in the meantime, right now I am planning to go back to the regularly scheduled diabetes connections episodes. I have a Few that I've recorded already a few interviews, and I think we'll just put those out as planned. And we will go from there. Thanks as always to by editor john Deakins from audio editing solutions. Thank you so much for listening and for letting me into your lives right now. I really appreciate it. I'm Stacey Simms, and I'll see you back here soon. Until then, be kind to yourself.
Unknown Speaker 39:28
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
Two big topics for this mini-espidoe. Stacey talks about Spare a Rose and talks to the leaders of Patients for Affordable Drugs.
Spare a Rose is an initiative to get insulin and other vital diabetes supplies to children in the developing world. Learn more here
Stacey also talks about what we can do about the price of insulin with Patients for Affordable Drugs founder David Mitchell and Lauren Stanford, the community organizing director.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
This episode of diabetes Connections is brought to you by the world's worst diabetes mom real life stories of parenting a child with Type One Diabetes available at Amazon as a paperback ebook and audiobook. Learn more at diabetes connections.com
this is diabetes connections with Stacey Simms.
Stacey Simms 0:26
Hey, welcome to this week's minisode something a little bit different. I've been doing these short episodes all year long for 2020. And this is our first interview type episode. But I wanted to get some information to you that I thought would be interesting and helpful and about patient advocacy. So we're going to talk about what's been happening with patients for affordable drugs. I spoke about them. Last fall of it put out a report and I wanted to follow up on it. Of course there's a lot of information in the news these days about the price of insulin price of insulin There were advocates at State of the Union address. These are not the same advocates, but a lot of the same push. And I also want to talk about spare arose. So let's do that first spirit arose is an initiative that happens every year to help kids with diabetes in developing countries, so that they can get insulin. It doesn't take a lot of money to help out and it really does make a huge difference in the lives of these people around the world. Why is it called spare arose? Well, back in 2013, a group of people in the basically the diabetes online community realized that for the price of one rose for Valentine's Day, they could make a huge difference in the lives of children. So you spare a rose, you save a child, they've expanded it so that you can, you know, spare quite a few roses. There are different ways to pay for this. But it's really a very simple concept. Where does the money go? There is an organization called Life or child, and they partner with diabetes centers in places like Rwanda, Mexico, India, to give critical supplies to young people who really have nowhere else to turn. Right now, this program supports 21,000 people in 42 countries. And the goal here, no child should die of diabetes. If you'd like to learn more, I will link up everything in the episode homepage. You can see pictures of the families that have already been helped. You can read stories of kids who need help, and you can find easy easy ways to donate. So if you can possibly spare arose this Valentine's Day, it would be very much appreciated. We have done a lot on this in the past. I will link up a very fun episode we did a few years ago with Carrie Sparling and Scott Johnson and Bennett Dunlap, where we talked about this initiative. Gosh, it was probably 2015 maybe was 2016 but it was a while ago about learning more, and why I really do urge you to consider taking part in Spare a Rose
While you're learning about that initiative, I also thought it was a good time to take a look at what's happening here in this country, and what's going on with our communities struggle to get the word out about the price of insulin. And if you've been following a lot of this, it has really heated up in the last couple of years. It seems like a lot of state legislators are taking this on. But at the federal level, it seems like it is stalling and you know, what can we do? Well, patients for affordable drugs put out a report a couple of months ago now. And I want to follow up with them and learn more about what they're doing. What we can do what what can be done about the price of insulin because I think when many of us hear this, we feel like there's just nothing I can do. It's overwhelming. Politicians are just arguing they're never going to get anything done. Well that may be true, that last bit, but there is something we can do. So I wanted to talk to the founder David Mitchell and community organizing director Lauren stand I should note that since I talked to them, each are three, which they're mentioning here did pass the House at the time of this interview, it had not yet passed, but the Senate has not acted. I reached out to Lauren to get an update on that. And she said that they need to pass the health care package by May. So they are pushing for them to include s 2542. It is less far reaching than HR three, she says but would bring meaningful relief to many patients. This is also called the prescription drug pricing Reduction Act introduced by Senators Grassley and widen and it has passed out of the senate finance committee as of this taping in a bipartisan fashion. It has not yet passed the full Senate and it includes the following it would penalize drug makers for price gouging. It caps Medicare beneficiaries out of pocket spending on prescription drugs, and it requires pharmaceutical companies to justify high prices. I will link up information on this as well as h3 and the other items we talked about in the episode homepage. Here is my interview with David Mitchell and Lauren Stanford, David and Lauren, thanks so much for taking some time to kind of explain a little bit about this. I really appreciate it. Thanks for being here.
David Mitchel 5:18
Thank you, Stacey, for the opportunity.
Stacey Simms 5:20
Thank you for having us. Before we talk about the report itself, and you know what we can do as individuals. David, let me just ask you to explain a little bit about what patients for affordable drugs is all about. Can you talk to us about the organization?
David Mitchell 5:35
Yes, patients for affordable drugs is the only national patient organization focused exclusively on policies to lower drug prices. We're independent, we're bipartisan, and we don't take money from anyone who profits from the development or distribution of prescription drugs. We do two main things we collect patient stories elevate those stories to policy makers and elected officials and train people to be advocates Lowering drug prices. And we are building a community of patients and allies that can be mobilized in support of policies to lower drug prices, both at the state and federal levels. My wife and I decided to do this, because she's a cancer survivor. I am a cancer patient. I had an incurable blood cancer. My drugs are very expensive. They're keeping me alive, but they're keeping me alive at a cost list cost of $875,000 a year right now. And just one of my drugs and oral cancer drugs carries an out of pocket cost of more than $13,000 a year. So we have a personal experience here. And we're trying to bring that experience to bear to mobilize folks who are struggling with high drug prices, whether it's for cancer drugs or Crohn's disease, drugs, inflammatory drugs, insulin, there are millions of people who are struggling We're trying to help them have a voice and get something done that will actually lower the prices of drugs.
Stacey Simms 7:06
Was it your personal experience with your cancer diagnosis that led you to start patients for affordable drugs? Or had you been doing this and then this happened.
David Mitchell 7:15
I had been doing health policy work in Washington, DC for about 30 years, then I got cancer. And my experience as a patient was really searing for me to find out how difficult I prices could make trying to manage a chronic disease or stay alive with an acute deadly disease. And I became increasingly frustrated because there were no patient groups speaking out about drug prices. Literally one day I woke up and I had an epiphany. And it was, hey, maybe if nobody else is going to do this, you should try. And that morning, I went downstairs and my wife said, Honey, can I retire? Can I work for free? Can we put in some of our own Money and try and build an organization of patients that would fight for lower drug prices? And she said yes. So here we are.
Stacey Simms 8:07
All right, I could talk to you about the organization for hours and hours. But we're really here to talk about this report the truth about insulin prices. So Lauren, let me ask you, as a person who lives with Type One Diabetes, what do you get out of this report? what's the takeaway here?
Lauren Stanford 8:22
Well, Stacy, I will tell you, when I first read this report, it was kind of shocking. I knew the prices of insulin, were out of control, but just seeing it all written down and laid out. Like that was kind of horrifying for me as a patient. And I know when people in the community saw it, it was kind of the same feeling like seeing the chart with the prices just going up and up and up and reading about the 300% increases and all this and that it was really like startling, but really good information, but kind of heartbreaking at the same time.
Stacey Simms 8:56
Lauren, let's go through this a little bit, because in the report, you will Aren't pulling punches. I mean, there's a section here that's headline price gouging and price fixing. Tell us about that. So not pulling punches. Yeah,
Lauren Stanford 9:09
we're really there's a lot of facts in this. And I think that the spec facts kind of speak for themselves, the price gouging. You can when you're reading the report, you can see that the three companies Eli, Lilly, Sanofi and Novartis, they've all been working together, it seems and price fixing this insulin to keep raising the prices and the report, our chart goes back to 2001. And you can see since then there's been this steady increase from all three of them. It's just crazy. I mean, I can't put into words how exactly it makes me feel. But David might be able to speak a little more to the history of the price gouging and fixing
David Mitchell 9:47
Well, the fact of the matter is that those three companies have managed to take control of the global insulin market, and they have effectively blocked other competitors from entering the market with The enough competition to actually drive down prices. And rather than compete with each other on price, they are content to maintain market shares and divide up the profits and be able to keep raising their prices in lockstep. It's very important to look at that chart and see whether or not they talk to each other and say, Hey, we're going to raise our price 15% next month, or not, they can each see what the other one is doing. And clearly, none of the three is willing to lower the price in order to try and steal market share their content to keep high profits and divide them up. We're going to have to break that cartel in order to lower prices or develop the ability to negotiate with the three directly which is why legislation to permit direct negotiation by Medicare in this country for lower prices is so important.
Stacey Simms 10:54
One of the things that that strikes me when you use words like cartel and gouging and fixed is why hasn't the government already stepped in? If this is so blatantly obvious, right? Why hasn't the government stepped in and said, you cannot do this?
David Mitchell 11:10
Apparently, I'm not a lawyer, apparently, unless they get on the phone and say, we're going to move our prices 15% all at once and talk to each other about it. They are allowed to do shadow pricing under our current law, and they're allowed to see what the other one is doing and then just match the price. So long as they don't talk about it. You can see what they're doing. It's obvious, but under law, if they don't talk to each other and collude, it's a harder case to prove. That's my understanding. I'm not a lawyer, to say, however, that the government isn't doing anything about it. You have to put one word behind it and that is yet because there are plenty of bills in Congress that would tackle high drug prices. And would allow, for example, Medicare to negotiate directly with the drug companies, including the insulin companies for lower prices. And there are bills to encourage the development of more generic and biosimilar drives that would provide additional competition that would also lower prices. So there is a recognition that this is a problem. But as with every one of the drugs we're fighting for lower prices for enough has not been done yet. We have much more work to do. The fact is in our system, drives are supposed to get a period of time to make a lot of money when a new drug comes to market and then we introduce competition through generics and biosimilars to make prices go down. Insulin is the exact opposite. We introduce these three drugs and instead of prices going down because of competition, they just continue to go up. And it's because of the abuses of these companies engaging regulators recognize it And I believe that within the next couple of years, we will succeed in making insulin look like the more normal model of high prices end and prices go down.
Stacey Simms 13:12
One of the things that I think is really interesting in this report are the personal stories, because it's not just numbers, which are great and useful information. But there are faces and names of people who have rationed insulin who would talk about the struggle to afford it. And Lauren, I mentioned that you live with Type One Diabetes and you have for more than 20 years, can you talk about your experiences and of the people that you know as well because I know you have to know people who've really been in tough spots.
Lauren Stanford 13:39
Yeah, and I always say that I am definitely one of the lucky ones because I've always had help and support with paying for my insulin and I've had my parents to fall back on but especially through my work. At p for ad I've heard stories about I were talking with a patient Yesterday who has to sometimes not pay your electricity bill so that she can afford her insulin every month? And I just hear so many stories like that every day and it's awful. And I mean, Stacy, you know, in the community, I think there's been, I want to say a isn't he? We don't. There's been multiple people who have passed away, I think five in the last year from rationing insulin, and it's just incredible that this can happen in America. I can't believe it. And like I said, I talked to people every day that are rationing their insulin, and it's just outrageous and heartbreaking. And like we say to legislators, when we're on the hilar we hear in our stories, like insulin isn't optional for us and rationing isn't an option at all or it shouldn't be an option that people have to do
Stacey Simms 14:48
something to do. I think one of the ways in which my eyes have been opened in the last few years is you know, when when we're fortunate like you and I Lauren to have insurance, right, right go and I get my supply and my insurance pays for it and it's 25 bucks for me it's no big deal here and there, but then there was a time where we were one bottle short, and they said okay $300 Yeah, that one vial of insulin right you think you think who is paying these prices? Right? It seems like well everybody I know has insurance. So even though the list price is $300 are people really paying that and you come to find out and correct me if I'm wrong here. The system is so complicated that even if you have insurance, sometimes you are paying list price you're paying different prices is that something that you found as well
Lauren Stanford 15:34
was prices are really important because a there are people who are uninsured and be when you're on a high deductible plan, you're paying lowest prices until you meet your deductible. So if you have a $5,000 deductible, then you are paying those lowest prices until you hit that 5000 marks and you know how many bottles of insulin someone may need in the first month of the year. I mean, that could be pretty close to five thousand dollars and a lot of people don't have that
David Mitchell 16:02
out of pocket. So well and I would add that in some plans, insurance plans, even after you meet the deductible, you will have a co payment or coinsurance and frequently that's based on list price. That's certainly true in Medicare. You pay all of your out of pockets based on list price. So list price really matters. And I think it is somewhere in the range of 65% of people who pay for some or all of their medications through the year based on with price.
Stacey Simms 16:41
David, you mentioned earlier, some solutions. Some you said yet. I really liked that. When you said there's this is you know, there's not solutions yet. Can you talk a little bit about some of the things that Congress is considering and also you mentioned a couple of them but help people who are listening Try to make a difference. am I calling up my representative and saying vote on this? am I writing letters? What can we do?
David Mitchell 17:07
Well, you can come to patients for affordable drugs.org and share your story with us because we will see to it that the story gets put to work making the case for why this problem needs to be addressed. And then if you're if they're interested, we'll be in touch after they leave their story and not for money because we don't ask patients for money, but to let them know of times that they can call their right their member of Congress or state legislator to speak up for reforms. What are some of the reforms? There is a bill in Congress right now and it may be voted on in coming weeks, called HR three, which is a very comprehensive bill in the House of Representatives that allow Medicare to negotiate over drug prices, and was set as a cap a number that is no high Or than 120% of what six other wealthy nations paid for their drugs. This would lower prices in this country dramatically, because we pay two to three times what other countries pay for their drives. HR three has other good features would cap out of pockets for people on Medicare, it would include inflation caps, so their prices can't be raised more than inflation. year over year. There's a bill in the Senate that is bipartisan, being championed by Senators Grassley and why didn't that would have inflation caps, again, making sure that drug makers can't price gouge by capping increases year over year at the rate of inflation. And the Trump administration has thrown its support behind the senate bill and the Trump administration may be about to bring forward April causal only covering Part B drugs. Those are drugs administered by doctors and nurses in hospitals or doctors offices that would use reference pricing international reference pricing to literally lower the price of Part B drugs to small sliver of drugs. It's only a pilot program, but it's very significant that the administration has brought this idea forward. So there are a number of proposals that are floating around. There are a number of other dynamics in play right now. And I'm laughing It's not funny, but there is a lot of obviously political energy being sucked out of the room by the impeachment process and the partisanship that exists, but I can tell you for sure that if Democrats and Republicans Both in Congress and in the White House could get a deal on drug pricing, they would all really like it. Because there's so much anger and energy around this issue. They want to go home and campaign on having done something. So we are trying to leverage that political energy to see if we can get something done. Before we get too deep into the election year in 2021, it will become increasingly difficult. Yeah, that
Stacey Simms 20:25
makes a lot of sense. It really does. I'm curious, and I don't want to be devil's advocate here. But and I know there's a lot of hope. And there's a lot of energy, as you say, but I'm trying to think of a time where we actually made progress on medical pricing, and things like that. And I mean progress, where prices came down and access improved in the last generation or so. Not to say it can't happen now. But has it happened have we had success in any of these things?
David Mitchell 20:55
know we actually have the most expensive health care system in the world. Some people think we have the best health care system in the world. But we don't actually, we have the most expensive health care system in the world, other countries have found a way not only to pay less for their drugs, but to pay less for all of the elements of health care, and still have better health outcomes, longer life expectancy. We have a system that is built in many ways, not only the drug pricing system, but the whole system is in many ways built to benefit the people who make money on it more than benefit the people who is supposed to serve. So we have hope, and drug pricing because 90% of Americans say they want Congress to do something about it. Democrats, Republicans and independence, there is an enormous energy. It's the only reason that there's hope because pharmaceutical industry is probably spending about a billion dollars a year to fight anything that would lower drug prices. And the amount of money that our side has, is dwarfed by that billion dollars. But what they don't have and we do is a very angry electorate, demanding that the people who they send to Washington and state capitals do something. That's what gives us hope. And that's why having people speak out is so important.
Stacey Simms 22:27
Lauren, let me ask you, you have been at patients for affordable drugs for not not too long. A couple months now. Are you? Okay, are you more hopeful than when you walked in the door?
Lauren Stanford 22:38
Ah, definitely. I don't know if that's because of the political timing, but I can tell you what, these people if anyone's going to get it done. It's this group and our advocates. We have strong voices and to echo what David said before something that we have that pharma and the pharmaceuticals don't have are these compelling patient stories and I think we're doing a really good job of making sure they're heard on the hill and that something needs to change. And I'm definitely hopeful that something is on the horizon, there is not a more deserving cause I think then lowering drug prices so that people can afford to live. So I'm very hopeful.
Stacey Simms 23:19
Thank you both so much for spending some time with me. We will link up the full report, you know, as we have in the past and information, how people can get in touch and share their stories, but I really appreciate it and thanks for fighting the good fight.
David Mitchell 23:31
Thank you, Stacey very, very much. Thank
Unknown Speaker 23:33
Stacey Simms 23:34
information on everything they talked about at diabetes connections. com, click on the homepage to learn more about patients for affordable drugs, the legislation that they talked about a link up some insulin for all hashtag stuff as well some other resources that are out there. And of course, I will also link up to spare heroes that I talked about at the very beginning of the episode. I know Valentine's Day is just about here as this episode airs. It's tomorrow but it is Not too late. And of course, the sparrows initiative will continue for a few weeks after Valentine's Day as well. So please, if you can take part back next week with our longer interview episodes, those drop on Tuesday, and I'm going to be talking to the guys behind the new book that's coming out. They have a podcast to mastering diabetes. And I don't know if you've seen these guys, their claim to fame, their big trademark is they're like, eat 500 carbs of fruit. And I had to talk to them, because it could not possibly be that simple. Of course, it was not. But they really were fun to talk to. It was an interesting conversation. It didn't go quite the way I thought, because sometimes there's a lot of snake oil out there. This is not that they are the real deal. They are the real different deal. But it was great to talk to. That's on Tuesday. And then next Thursday, we will have another minisode and that will not be an interview episode as I just did. And that'll be back to just me talking about one topic for 10 years. 15 minutes. I love doing these. There's so much fun. I've learned a lot already in just the last couple of weeks and I hope you're enjoying them too. If you have a topic that you'd like me to talk about our question you'd like answered, please let me know Stacey at diabetes connections. com or you can just go ahead and post in the Facebook group. I have so many fun interviews lined up. I'm so excited for the weeks to come. But I always want to listen to you and deliver what you would like to hear. So if you got something, please please please let me know. All right, I am Stacey Simms. I will see you back here on Tuesday. Until then, be kind to yourself.
Unknown Speaker 25:42
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
Meet dietitian and strength coach Ben Tzeel. He says he started getting hooked on strength training as a teenager and hasn't looked back. Ben & Stacey talk about his wild Instagram posts where he shows you how he doses for food like giant donuts, and carbs and macros and diabetes and exercise..
In TMSG: a girl scout troop decides to educate their community (check out the video here)
and a comic book from the UK aims to educate about T1D (more here)
Stacey & Ben also talk about specifics to help her son, Benny, as he begins high school wrestling. At his first double practice (weights & mats) Benny needed to eat 75 uncovered carbs to stay above a blood sugar of 80!
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Recently, the FDA approved the very first stable liquid glucagon, brand name GVOKE, and as it’s showing up in pharmacies and becoming more available, we wanted to learn more about it.
After all these years.. it’s amazing how we suddenly have two new options on the market. The orange or red box glucagon most of us have held onto since diagnosis was approved back in 1961!
This is the second FDA approval for a next-gen improved glucagon, in 2019, following the recent FDA Approval of Lilly’s nasal glucagon, Baqsimi.
The company that makes Gvoke is called Xeris. Stacey talks to CEO Paul Edick and senior VP Ken Johnson.
Disclosure: Stacey has received compensation and travel reimbursement as an adviser to Xeris at previous events. No compensation was asked for or provided for this interview (or any Diabetes Connections interview).
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This week.. a frank discussion about the type 1 diabetes community and inclusion. About race and diversity. Actress and model Anita Nicole Brown says people of color are being left behind
Buy Stacey's Book: "The World's Worst Diabetes Mom"
We talk about how to get more voices in the community.. and better representation at conferences and in leadership. We also talk about working on sets and getting booked for acting jobs with type 1.
In Tell Me Something Good.. a bunch of ride and walk milestones to share.
One of our TMSG mentions is Dennis who's been on the show before. We talked about turning 65 with type 1 - Medicare and more.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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What happens when two huge diabetes organizations decide to work together? We're all about to find out. Stacey talks to the CEOs of JDRF & Beyond Type 1 about their newly announced "alliance."
JDRF's Aaron Kowalski and Beyond Type 1's Thom Scher join Stacey for a talk about why these groups came together and what that means for the diabetes community.
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This week, it's our Ask the D-Moms back to school edition. We talk about tech in school, schedules, 504s and when your kid only has twenty minutes for lunch. Stacey & Moira McCarthy answer your questions.
Plus.. Tell me Something Good with a big brother who steps up, and a pageant appearance that makes a difference
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