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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: December, 2020
Dec 29, 2020

Could a new, simple at-home test change the way we look at diagnosing type 1 diabetes? JDRF hopes to make something called T1Detect part of annual health checks someday. Dr. Frank Martin is a Director of Research at JDRF. He explains T1Detect in detail, including what the test is like, what it costs and where the information goes.

More on T1Detect

Our previous episodes on Trialnet

And.. in our last scheduled show of 2020.. Stacey talks about ending this lousy year with a lot of hope.

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

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Episode Transcription:

Stacey Simms  0:00

Diabetes Connections is brought to you by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:16

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:22

This week, a new simple at home test for the antibody markers of type one JDRF is rolling out T1Detect, something they hope that someday will be just part of regular health screenings.

 

Frank Martin  0:36

We would like to see this included so that right off the bat, we know how many people in the United States and in the world are at risk for developing insulin dependence so that we can intervene earlier into these people we can improve their health right at the beginning.

 

Stacey Simms  0:49

Frank Martin is the Director of Research at JDRF. He explains T1Detect in detail including what it costs and where the information goes.

And it's our last scheduled show of 2020. I want to talk about ending this lousy year with a lot of hope. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I am so glad to have you here we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms, my son Benny was diagnosed with Type 1 14 years ago right before he turned two, my husband lives with type two diabetes. I don't have any type of diabetes, I have a background in broadcasting. And that is how you get this show.

And here we are at the end of 2020. I was taking a look back I put out 71 episodes this year, we passed a million downloads, including 100,000 podcast views on YouTube. I talked to people around the world this year, including a mind blowing nine person six time zone game show over the summer, playing Hollywood Squares via zoom isn't something I'd expected to do going into this year. But that is just one tiny example of how we all I think tried to find some good in the great, awful. That was 2020. That's what I've been calling it. I'll talk just a bit more about this year. And my thoughts into next year. And some other news plans I have. I'm going to do that at the end of the show after this interview. So I hope you stick around after that.

I don't know about you. But I was really intrigued when I saw JDRF putting out a lot of posts, a lot of ads, really try to spread the word about T1Detect this new at home antibody test. My guest Frank Martin does a terrific job of explaining what it is they're testing for, and why and how it works. I'm not going to do that here. But we have spent a lot of time over the last few years talking about TrialNet and the work that they have been doing in this space. I am a big fan of TrialNet, I will link up more information and the episodes that we've done about their research. And if you're not familiar, real quick, TrialNet does do testing to see if people carry the antibody markers. They are a research study as well, they are trying to learn how to prevent type one. And we do talk about that in this interview coming up. But again, I'll link back to other interviews that we've done. It's been quite a few over the years. And you know, they're likely going to get approval for Teplizumab, the medication that is now shown to put off the development of type 1 diabetes for three years. So all of that to say why do we need to detect, right?

Why this and why now, I think Frank does a great job answering all of those questions and more. And also, there is a video version of this interview. I'm doing that more often. And that's why it may sound just a little bit different. As we start, you can go watch the whole thing if you prefer over on our YouTube channel. It is Diabetes Connections over on YouTube, but it's the same interview. It's just your preference. Whether you like to listen or you prefer to watch. I'm talking to Dr. Frank Martin about this new program from JDRF really caught our attention and wanted to learn more about it.

Dr. Martin, thanks for joining me.

 

Frank Martin  4:10

Thanks very much, Stacey. It's good to be here.

 

Stacey Simms  4:12

Yeah. So tell me a little bit just in general about T1Detect I think a lot of people saw it pop up on social media got it in an email from JDRF. What is it

 

Frank Martin  4:21

first off something we JDRF we're very proud of our our mission is really around accelerating the development of disease modifying therapies to help slow cure or prevent to one day and towards that we saw that there was a gap there is a need to be able to identify more people who might most benefit from therapies like that. And right now, there's a lot of great programs like great research programs that are doing this places like TrialNet, the asked program in Colorado, there's a lot in Europe as well. But those programs still aren't identifying enough people. So how do we identify more people? We knew that we need To educate more people about what it means to be at risk for T1D, that it's not just family members who are at risk, but I think it's almost 85% of people who are diagnosed don't have a family connection, we need to be able to teach the general population teach the United States and hopefully the world that this is a real issue.

So T1Detect really is an education program and awareness program about type 1 diabetes and its risks. And then a very important component of that is making the test available to people. Because right now, they're not really available to people except in the context of research settings, or as people like you might know, in the context of an actual T1Ddiagnosis, when someone's has super high blood sugar, they're in the hospital. And then the doctors will do a confirmation test to see if it's type one, we want to make it available to people who don't yet have symptoms. So hence, T1Detect.

 

Stacey Simms  5:49

All right, so tell me about how it works. It looks like you get something in the mail, tell me about the test, like the physicality short,

 

Frank Martin  5:55

short, so you can go and find the test in a couple different places. First and foremost is the JDRF. website, we have access to information and the test kit button on our website through T1Detect, you click the button, it gives you some information about what it is to have to on D what the risk factors are, what are auto antibodies, because remember, we're What are we testing for, we're testing for auto antibodies, one of the major signs and symptoms that people have the autoimmunity, at least a T1D, you click the button you go to the Enable portal enable is the company that's running the test for us fill in some information, we're asking for your name, mailing address, things like that, we're also asking for some demographic information, we want to learn who's getting to end who's at risk, and that'll help us improve the program going forward. And then you come to a choice where you can pay for the test, the test is not terribly expensive, it's $55. To run the test, plus or minus a couple taxes, you also have the option if you cannot afford the test to have JDRF pay for the test for you will pay for the bulk of the cost. I'm leaving you with just a copay. $10. Right now, it's not a feature to ask your insurance company to pay for this, but in the future it will be. So all that being done, the test will get sent to you, you'll get a little box in the mail. And it was pretty simple. I did it. You have a Lancet, you poke your finger. And then you fill in two out of four of these circles on a piece of cardboard, let that dry and send it back. And then a couple weeks later, the company will tell you, you have one, two or three of the type 1 diabetes specific auto antibodies. Alright, so

 

Stacey Simms  7:34

let me just stop you right there. It's a it's a finger stick, you guys are providing the Lancet

 

Frank Martin  7:38

in the envelope and the band aid and the gauze. It wasn't very hard. I wash my hands first, there's a little alcohol swab to sterilize my finger. And then I did the test. But one of the benefits of what we're testing for, it's sort of a little resistant to dirt and contaminants. Yeah, I would

 

Stacey Simms  7:55

think you know, you're not you're at home. You're not in a sterile lab. Yeah.

 

Frank Martin  7:58

Yeah. So it's been okay. The reason we partnered with enable bio sciences on this particular test kit was because they've tested it a lot in this situation, and shown that when it's performed at home, and I have dogs, there's dog hair in my house, there's all sorts of crazy things going on in your house, it's still met the sensitivity and specificity requirements that we would need to say yes or no, you have the presence of this marker. So we have some pretty good confidence in the validity of the test. In that regard.

 

Stacey Simms  8:27

I have a lot of questions. Sure. My first is, and we're going to talk more about the test itself and what you're testing for and what you do with the results. But I have to say my first question is, if you're looking for people who are not touched by type one already, right? You want people who don't have it in their families? I have to say, I'm not sure jdrf I didn't even know what that was right before diabetes, why not reach into pediatricians offices or, or other organizations? Or is this coming?

 

Frank Martin  8:54

So that's, that's a great question. I've two answers. First is, yeah, if you if you don't know jdrf, if you don't know T, one D, it's not going to resonate with you to see now that there's a test available to tell me about that. So there's a huge education campaign. That's part of this. But we're going to educate people through social media, places like Facebook, web and D to tell people in the world who wouldn't normally know about tea, Wendy or jdrf. What this means that's an important component of it. The second is, how do we educate doctors who may not be familiar with tea one day, not all doctors are super familiar with it. So there's a huge healthcare provider education piece, that's also part of this program. That's why this program is not just a screening program. It's very heavily into patient education, population education, health provider education, and all those things are kicking off now. So this week, I think you'll start to see some social media campaigns around it. And in the new year, we'll be rolling out the health care provider education pieces.

 

Unknown Speaker  9:52

So let's get back to the test itself.

 

Frank Martin  9:54

Sure.

 

Stacey Simms  9:54

What are you testing for? I don't know how specific you want to get a scientific you want to get It's not a question of high blood glucose and that sort of thing, right?

 

Frank Martin  10:03

It's not. So let's take a little step back to the about the biology of type 1 diabetes, the biology of autoimmune diseases. So type one is an autoimmune disease, you know that I know that not everyone knows that it is. And one of the ways we can tell a person who has an autoimmune disease is we can look in their blood for signs and symptoms of that signs and symptoms that their immune system is doing something is not supposed to be doing. In type 1 diabetes, we look for something called auto antibodies. Now auto antibodies are something that that's sort of a general term to all different autoimmune diseases. People with multiple sclerosis have auto antibodies, people lupus have auto antibodies. What we're looking for in type 1 diabetes are auto antibodies that are specific to type 1 diabetes. And what makes them specific to type 1 diabetes is they are specific to things that are in your pancreas. So we actually are looking for three of the four primary auto antibodies that have been determined through many many years of research to be very good diagnostics for type 1 diabetes, they're IAA, IA2A and Gad, 65. Some people may remember those names from trial net or other organizations. But there are three of the four that help us diagnose to end and predict your risk. Now, we're not doing the fourth, but we will soon do the fourth. But based on those three, if you have two or more of those, we know pretty well that your risk of developing insulin dependence is very, very high. In fact, if you have two or more of those in your blood, you already have type one diabetes. So that's something people don't understand. Right? If you have two or more of those auto antibodies in your blood, you already have type one diabetes, you may not be symptomatic, but you already have it.

 

Stacey Simms  11:46

Well that Okay, so I know people who've gone through trial net and have had two or more of the antibodies and don't don't have well, they have type one as you're saying, I guess, but they don't have the signs and symptoms. Well, how is that

 

Right back to our conversation in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's what Gvoke HypoPen comes in. It's the first auto injector to treat very low blood sugar. Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give Gvoke correctly. I am so glad to have something new, find out more go to Diabetes connections.com and click on the Gvoke. logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon com slash risk. Now back to Frank, and he's answering my question about people who test positive for the antibodies, but don't go on to develop the classic signs of type one.

 

Frank Martin  12:59

When we talk about populations and health, there's always people at the far end of the spectrum, those people are at the far end of the spectrum, they don't represent what is normal for the whole population. There are a few people who who have two or more auto antibodies who never become insulin dependent. There's also some people who don't have any auto antibodies who become insulin dependent, and that is type 1 diabetes. It just means that in those people well in the people who are more who don't get insulin independence, there's some sort of protective mechanism going on there that I can't entirely explain right now, in the people who don't have these classic auto antibodies, it means they have something else in their blood that we're just not testing for.

 

Stacey Simms  13:40

I mean, I know the research isn't perfect, and it's not, you know, exact, but those things are important. Which leads me to my next question, which is what happens when someone gets their results? And they find out they do have these auto antibodies, what is the testing system do for them, so they don't honestly get worried. And that's tough information to get if you're just home in your house opening a box,

 

Frank Martin  14:01

right? There's a couple things that happen through screening and a to end diagnosis that can be scary one, they're scary, they they can cause a lot of psychological distress to the patients, their families. Also, some people get diagnosed with T1Din a really serious medical situation called diabetic ketoacidosis, which is in and of itself scary, and which in and of itself can cause worsened glucose control over the rest of your life. So there's a couple things we're doing to mitigate all these factors. First, we know that sometimes people get stressed out when they're thinking about getting screened for T1Drisk or when they learn about T and D risk. And we're making it perfectly clear that there are health care providers at their disposal, who they can talk to specifically for the mental health concerns around getting a risk diagnosis. Also jdrf has specific volunteers who are trained in talking to people who have recently been diagnosed with TMD. They've been through it themselves. They can see Say what their journey was like, What is good, what is bad, what to worry about what not to worry about. And that sort of personal communication, that sort of personal support is really important to help mitigate those stresses. And so we're going to deploy those same people, to the people who get a risk assessment from our program.

 

Stacey Simms  15:17

So and I really appreciate you going through this, because you are a scientist you are, you know, you're kind of going above and beyond, I believe, talking about the mental health and support here, but I think it's so important science to Good point. So when I'm home, I get my envelope, it says you have these markers, here's a phone number to call, or here or next, someone's

 

Frank Martin  15:34

gonna call you. Okay, so first, you'll get your results, you actually will get an email from enable saying your results are available, you'll have to log into the website to see your results. Now enable the company will know that you're in a high risk category, they will have a medical doctor call you to provide the results to you over the phone and talk to you over the phone, then you'll start to receive a series of messaging campaigns directed to you coming from jdrf saying we understand what's happening, this is what we recommend you to do. A lot of the recommendations are follow up with your primary care physician, you probably should get a glucose test after this, we're giving all the recommendations that we know from our own experiences have helped in the future, we'd like to see maybe a network of care around these people. But we don't have that yet. We don't have the ability to recommend a specific doctor to these people. But we can advise them to talk to their own doctor, we can support them through their jdrf network and give them the resources they need to make this journey as painless as possible.

 

Stacey Simms  16:37

I have to say, I am so glad to hear that you are not going to wait to be contacted by them. Because you could that was my fear just looking at this as someone who's been through the process. No, you know, when you get a diagnosis, you're not thinking straight at all. So I think it's great that you're gonna be telling we've done

 

Frank Martin  16:53

this before, right? Yeah, part of the of the benefit that is jdrf is, is we're made up of people who have to end who've been through the diagnosis, who have a lot of experience and support to offer to to new families. And so it's the least we can do in a program like this, to offer that to a person just finding out that they're at risk.

 

Stacey Simms  17:12

You mentioned the four antibodies, yes, pressing for three, what's elusive about the fourth one,

 

Frank Martin  17:19

it the other one's called z 28 zinc transporter aid. And it's just a trickier protein to work with. So the assay that the company's using right now just doesn't have that sorted out yet. But they will have it and they expect to have it next couple of months, it's not a big deal to not have it right now, we can almost definitively say based on the results of this test whether or not you'll become insulin dependent over the course of the next couple years, z nta. The fourth one just helps you make that a little more sensitive. And it's just one of the things that we could add on going forward. Right now we're focusing on auto antibodies. But there's other things that jdrf research is trying to develop that might improve our detection of risk in the population, things like genetics, things like metabolic factors that we just haven't the science isn't done yet. In the future, you'll see things like that, I hope being rolled into programs like ours,

 

Stacey Simms  18:12

when I was tested for I went through testing for trial net when I was young enough to go through testing for trial that but I kind of did it just to see, right we did not have type one in my family that I knew anything of a couple of years later, one of my my cousin's was diagnosed at age seven or eight, which is older than my son. But at the time, we knew nothing. But I never had my daughter tested. Because at the time I looked at it as well, if she's going to get it, I'm going to know the signs. Now. I wasn't worried about decay or anything like that. I wasn't thinking about the research aspect at all. Can you talk a little bit about why trialnet or G one detect why these are important to look at? Not just as Do I have it or not? but more of how can we prevent or treat type one?

 

Frank Martin  18:55

That's a good question. Well, first, let me say that you speak about why you got tested Why you didn't test your daughter. A lot of TMD parents say that? Well, I'm going to see the signs and symptoms of diabetes coming on before it gets so serious that my child's in a hospital. That's not always the case. Right. Now, we see a lot of people saying that, but the science doesn't support that. So that's one thing. We're trying to prevent a serious hospital event that might occur diagnosis. This is what trial nets doing this is what other screening programs are doing. Second, there's a thought that there there's nothing I can do if my child is found out to have early stages of type 1 diabetes because they have these auto antibodies. And that's not necessarily the case. Because one, we know that there's really important monitoring that can be done in the hospital setting a blood glucose test something as simple as that, that can be done periodically, that could reduce very significantly, the chances of that child having DK also insulin therapy can start earlier because remember, just because you've auto antibodies in no symptoms, that doesn't mean you don't have to end you have T one D. And that means you're going to need insulin therapy sooner rather than later. So it really doesn't benefit people to wait on that. That's something to discuss with your endocrinologist. But starting that earlier actually is beneficial for all people at risk. Third, there are soon going to be ways I hope to intervene. Next year, we may see the approval of the first therapy that can delay insulin dependence in people with type one diabetes, a drug called to plews, a map from a company called prevention, that will be a really important first step in curing this disease and stopping it from occurring at all. And then to get at why would we screen more people, we know that developing new curative therapies for people to end Well, that depends on people participating in clinical trials. Now, I'm not I'm not saying we're doing this, because we want to put people into clinical trials. But the fact of the matter is that programs like trial net and other screening programs here in the United States or in Europe, are not identifying enough people to make these clinical trials go fast enough. That really slows down to development of new therapies for T one D. So one of the benefits of a program like this is to further increase the number of people who are aware of clinical trials. And we hope that that'll increase the development of new therapies. And also pharmaceutical companies will start to see, well, there's actually a lot of people out there clamoring for a treatment or a cure for this disease. Maybe we really need to be doing something about that. So it should get their attention pretty significantly.

 

Stacey Simms  21:31

We've been talking about trial net this whole time, why not just team up with trial net? They've been doing it. They're the ones that developed the trials for two prism and got it this far, right? Why try something new.

 

Frank Martin  21:43

So what Tron does is amazing, what they've done over the last 30 years is amazing. They've charted the progression of T one D, and they've led to the development, I hope that the first real therapies for T one D, we could keep funding research studies till the cows come home and have not made any progress towards our goals, our goals of having auto antibody screening as part of normal preventative services, to have auto antibody screening as something that that insurance companies will reimburse for. So what to detect, we hope will do is force those changes into the US healthcare policies to incorporate that into normal preventative services. We're also not restricting our program to certain ages, or to just family relationships. We'll try that does great, it's a really important model to say how can we find the most people the quickest, or the highest risk of type 1 diabetes, and we know that people who have a family member, especially a first degree family member, that has type 1 diabetes are at some of the highest risks in the population. So it's a really good way to quickly identify the most people you can, but it doesn't capture everyone. We're not capturing adults, almost 50% of people being diagnosed are adults. And we're not capturing that in programs like trial net, and almost 85% of people don't have a family member. So we're not capturing that in trauma. So by us doing something like to detect in parallel to trial that we're trying a different tactic that will hopefully get us both to the same goal of increasing the numbers of people available for clinical trials of changing clinical practice guidelines, things like that. And the fact of the matter is, you know, the people we identify in our program, are candidates for trial that hopefully will we feeding that ecosystem as well, with with our program, just to put a cap on it,

 

Stacey Simms  23:32

it is different, it is distinctive, the testing, I mean, even the trial net, the way that they test you is not a finger stick? No. So it's just a different process altogether.

 

Frank Martin  23:41

It's a different process altogether. So we also, we want to make sure that our tests had a type of kit or acid that anyone could use, that you didn't have to be near certain place for the test to be done, or you didn't have to wait too long for the thing to come in the mail. So there were certain boxes, we have to check with our tests that we thought were important for making it readily available to the most number of people as possible. And those were things like it had to be a commercial style kit, it had to depend on a blood sample that was really, really small, and really, really stable on a cardboard. Yeah, cardboard piece of paper that's sitting on my floor. My dogs are walking over it, but it's okay, cuz I can send it back and it'll be still fine. So there were a couple things we want to call boxes. We want to tick there.

 

Stacey Simms  24:26

I went through the website a little bit. I didn't go all the way through it. Okay, I'm curious. I will probably order it, you know, just to kind of see maybe I'll get my daughter to go this time. But I'm curious what happens to the information. You know, am I signing and saying jdrf knows this medical company knows. Talk to me a little bit if you could about the confidentiality.

 

Frank Martin  24:44

Did you look closely enough at the bottom of your webpages? Of course not, of course, not.

 

Stacey Simms  24:50

The terms and conditions.

 

Frank Martin  24:52

Exactly. So that's something that's really important, right? Because what we're talking about now is people's personal unprotected health. information, it's a test result. So we have to make sure that that is safe and secure, and that the person has choice and how that data is used. So you'll see at the bottom of the portal, there's certain disclosures opt in language, you have to agree to share your data with jdrf, or the company enable, we also have if you read the terms and conditions, if you agree to share your data with jdrf, we agree to protect it, we won't let anyone else use it without your permission, we'll only use it to improve the program, or to maybe facilitate future research studies. Because the data is going to come out of this, it's actually really important to see where people live and how old they are, and what ethnicities they are, as it relates to having auto antibodies. That's really valuable information for the research community. So we want to ensure that that data is available to them in a way that protects the person's rights. So pay attention to those little boxes at the bottom. But know that jdrf is working to ensure and will ensure that is used safely and to your best interest.

 

Stacey Simms  26:12

Well, and I'll give you an example. So in other words, I am great with research, political scientists can have all my data that's fine. And jdrf can have the data. But the last thing I want is for jdrf to say, Hey, Stacey Simms wrote a book. And we're going to give Stacey all of this information for trial on that because here's a whole new customer base for her.

 

Frank Martin  26:29

So that's not going to happen. We're not allowed to do that. No, if we were given that opportunity, Stacy, we would have the right to you and say, is it okay that we're sharing your data with Stacey Simms? And you'd have to say yes or no, we're making sure we can't do that without your permission.

 

Stacey Simms  26:45

And we would never share Stacey Simms. She

 

Frank Martin  26:48

never, never very bad influence. I mean, we know that already.

 

Stacey Simms  26:53

aside, I'm really glad to hear that that's one of the

 

Frank Martin  26:55

Yeah. And this is like maybe Jay dress first foray into having access to what could be protected health information. So we have to make sure that the patient's rights are front and center. And that's protected in any way we

 

Stacey Simms  27:10

can, as we see the rollout of this you've mentioned we'll see social media, you're trying to appeal to more than the the jdrf families, you know, the families that are already at the walks and virtual events this year, what would be your your ultimate goal? You know, personally, would you like to see this in pediatricians offices in the next few years? Would you like to see it at as you say, you know, Web MD, check a box here? What are you hoping for?

 

Frank Martin  27:32

There's Frank, personally. And then there's Dr. Frank, who works for jdrf.

 

Stacey Simms  27:37

All right, let's start with Dr. Frank,

 

Frank Martin  27:38

I actually would say both are the same goal, we really would like to see this as a normal part of preventative health care, so that when you're taking your child to a pediatricians visit, they normally would get a blood test for something at age two or three, we would like to see this included. So that right off the bat, we know how many people in the United States and in the world are at risk for developing insulin dependence, so that we can intervene earlier into these people, we can improve their health right at the beginning, that holds true to children and adults. There's a lot of adults who are mis diagnosed with T two D, but they really have T one D. So we want to make this available to all doctors, not just pediatricians and just become a standard part of healthcare.

 

Stacey Simms  28:24

I have to ask about cost. I know you've said that you are subsidizing it's only $10 if people cannot pay the 50 or $55. You mentioned but that's still a barrier, isn't it? And is there a goal you mentioned health insurance isn't one of your goals to try to get that covered fully?

 

Frank Martin  28:40

It is so with our big goal or my big goal and address big goal of having this included in as standard care and preventive services worldwide. That includes reimbursement. So what I almost envision is sort of like inflection point where Jeff and his partner should be able to float the cost of the test. And then eventually, insurers will start reimbursing and reimbursing or reimbursing that we sort of meet in the middle. And cost won't be a barrier. I'm acid that's going to take some time. Stacy, don't take some time. But it's right now people can take the receipt and try and get reimbursed for it. We really don't know how many companies will reimburse for this. And we're expecting that they'll have a lot of inquiries about this next couple of months. And we may have to have some phone calls with some of these insurance companies and deal with this issue. jdrf right now is working with our own insurer, the one that handles jdrf staff to see if they can include this as a reimbursable test.

 

Stacey Simms  29:35

Yeah, because I'm gonna I'm gonna ask a question. And this is a tough one to ask. And I know it might be tough to answer. But without that, you know, you're going to get a subset of people taking this test, who are largely affluent, who are largely educated, better educated about diabetes, certainly, who are perhaps mostly white, upper middle class, all of those things that we know we need more, you know, we know we need more diversity in research and in diabetes. So I know you know, it's important, but I felt like it's really important that we talk about that. Are you prepared for that that first subset of people that you get to not be as diverse as you would hope

 

Frank Martin  30:10

we are? I'm not expecting it to be the case. But it could be the case. And so one of the benefits of this program is that we'll see the data, we're asking for demographics, we're looking for where people live. And if they offer it, they'll give us their general salary, ranges, things like that, we'll see how that matches up with who's getting the test. And then this program can pivot, we can then take that information, say, oh, we're not penetrating the right population, we're missing out on a subset of people who might be no socio economically disadvantaged, we need to change the program to better target those people. And we can just turn pivot and do what we can to get those people because our goal is really access for everyone. Yeah. And so we will be consistently monitoring the program to see how we can best target these other populations.

 

Stacey Simms  31:00

And I imagine there were a lot of conversations inside jdrf, not just about the funding, or the the cost for the people taking the tests. But there's a lot of hard choices going on at jdrf. Right now, in terms of what programs to fund. Before we wrap it up. Why was this one more important than other programs and employees and you know, chapters have merged, it's been a very difficult year. So to have something I got to imagine this was really important to you all.

 

Frank Martin  31:22

So it's super, super sensitive question. These, this has been a tough year for us, we lost staff, we lost revenue, we had to make some really significant hard choices about what research we fund through all that screening has still maintained a major priority of the organization because it contributes to so many of our other programs that will accelerate disease modifying therapies into people's hands. That being said, this particular program, I mentioned before lives outside of the mission lives outside of the research mission is more community engagement, patient education, things like that. We have a partner on this. So we have a corporate partner to help subsidize the cost of the program. And we're going to solicit hopefully solicit support from other partners to make this sustainable in a way that it doesn't detract from our core mission of funding great research. So I do want people to be cognizant, this is slightly a separate program that jdrf manages, but it's really not impacting our bottom line of fundraise dollars going to the best research. This is stuff that we're soliciting. In addition, specifically for this program, we wouldn't be able to do this without our corporate sponsors, the first of which is prevention. And we hope to add more to the program in the next couple months. This is a disruptive program. We know people have a lot of feelings about this both good, bad somewhere in the middle. If people had those feelings, have those questions, they should reach out to us. We're happy to hear them to learn from them, and maybe improve or modify the program. And we're happy to answer any question. We have high hopes, we really hope that this will make some big changes for the lives of people with to end. And it may not happen immediately. But it should start happening in the next couple of years. We're excited. We hope other people are excited about this, too. Well, thank

 

Stacey Simms  33:06

you so much for joining me to spend so much time and talk about this and explain it so well. And hopefully we can follow up and find out how it went a couple years.

 

Frank Martin  33:15

A couple years. couple months. All right. Great. Thanks, man. Thanks for taking the time to talk to me. And listen, if you or your listeners have any questions, send them our way.

 

Stacey Simms  33:25

You got it.

 

Unknown Speaker  33:31

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  33:36

If you do have questions, feel free to send them to me. I think I'll put a post in the Facebook group, you of course, can contact jdrf directly, but I'll collect those. And I'll send them to Frank, and we'll get follow up, hopefully. So what do you think of this? Would you send away for it? Would you take it with you have your children take it? And what do you think about getting this to the greater population, I mean, that is where it really needs to be. I think if we can somehow screen for type one like they do in some European countries, they've started these screening programs where everybody of a certain age starts getting these screening tests for type one, I think that would be incredibly helpful for all the points that Frank made. So I'm really interested to kind of follow this and see how it goes.

Of course links as always at Diabetes connections.com on the episode homepage, and all the information that you need will be there in the show notes if you're listening on a podcast app a little bit about the end of this year, and a look ahead to next year in just a moment.

But first Diabetes Connections is brought to you by Dexcom. And you know, we started with Dexcom back in the olden days before share there was no share when he got Dexcom. So trust me when I say using the share and follow apps really makes a big difference. Benny and I set parameters about when I'm going to call him how long to wait, you know, that kind of stuff. But overall it helps us talk and worry about diabetes less and if he's at a sleep over or away. It gives me so much peace. of mind, it also helps. And I love this part if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours, and not just at one moment in time. And that really helps you figure out what steps to take the alerts and alarms will be set also help us from keeping the highest get too high, and help us jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow AP To learn more, go to Diabetes, Connections comm and click on the Dexcom logo.

 

I don't have anything profound to say about 2020 we have all been living this great awful together. longtime listeners have been going through it week by week with me here on the show. We've had some incredible conversations with us you listened some great zoom calls, some episodes, I put together with your thoughts as I interviewed listeners. And you know, it's really not as though the calendar is going to turn to January 1, and then everything's gonna be fine. You know, it's gonna be a long time. And maybe not ever before we go back to before, I'm not sure that life will ever be exactly the same as it was before COVID.

But I do want to talk about just a few things that I'm thankful for a few things that have been a bright spot this year, when it comes to diabetes, control IQ has made a huge difference for Benny this year, I'm so thankful I'm really happy that the technology works as well as it does for him. And that we can afford it, we have access to it and we can afford the insulin that goes in it.

I'm really thankful for my local group, we have tried to be there for newly diagnosed families. I mean, you know, we have a big Charlotte group, I've run a I run a Facebook group of seven to 800 families, it's 850 families at this point. And usually we'd be you know, we'd be hugging these new families would be crying and laughing and coffee shops and the kids would be meeting and homes and things like that and playgrounds. But we did our best on zoom. And in Hangouts.

We have a lot of healthcare workers in this audience listening to this podcast, and boy, are we thankful for you, boy, do I salute you. I cannot believe how this all started off with everybody together applauding healthcare workers, I mean, literally right, making noise in some cities and banging pots and pans. And it ended with so many people not in this audience likely, but so many people openly define precautions and not taking things seriously, which puts more of you, you healthcare workers at risk. So stay safe, please know that we are thinking about you. And we do. Thank you.

And to that end, I am very thankful and very excited that in our next bonus episode, we are going to be talking to healthcare providers with type 1 diabetes who have received the COVID vaccine. We're going to get their reactions to it and their messages about it. This is hokey, but it's true. I'm getting chills talking about this, because I've already done a couple of the interviews. And they're all talking about the hope that they're feeling. We do have a long way to go. But man, it's this this feeling that we haven't had for a long time. That episode is scheduled for New Year's Day, because I want to start 2021 off with some good news. I want to start it off, right? I'll post on social media if there's a change in scheduling or something happens. But right now, that's coming up on New Year's Day.

 

Quick housekeeping little bit before I let you go, look, we're going to be technology heavy in 2021. On this podcast, you have asked for that you have shown by your downloads your interest and your requests that you want to hear about the latest and greatest in technology. I'm not gonna stop doing the personal stories, but we are going to have an emphasis on pump companies CGM, what's coming down the pipeline, that sort of thing. Because of COVID delays, I think we're going to see so much technology news, this coming year, I mean, new releases, new partnerships, and more, because there was supposed to be stuff happening this year that got pushed off. And of course, there was stuff that was already scheduled for 21. So there's gonna be a lot to talk about. I'm very excited to bring you a lot of those conversations. It's really cool to talk to some of these companies and find out what's coming down the road.

We do have returning sponsors, I want to mention that and thank them very, very much, my friends at Dexcom and Gvoke are going to be with us for the new year. And we are going to be joined by a new sponsor Dario I can't wait to let you know more about them. Some of you probably remember them there, the nifty meter that kind of goes right into your phone. But there is more to them than that, although that is pretty nifty. So we're gonna be talking with them and, and bringing you a lot of stories and information from Dario.

But thanks to all of my sponsors cannot do this show. without their support. I guess I could run a Patreon or SQL to donate but I think that you will do enough and I want this show to be free. I don't want anyone to have to pay to listen to it or feel obligated to send me a donation there are much better places to donate. So huge thank you to the sponsors that help me do this and devote the time that's needed to do it right. And again Dexcom, Gvoke and Daario. Please visit their stuff on my website. Check out their posts when we share them and support them if you can.

I do have some other new sponsorship opportunities by the way so if you're listening in have a business that appeal to this amazing audience, this incredibly engaged, educated and fabulous audience, just let me know.

And finally, I am pivoting in 2021 to do something completely new for me. And it is not diabetes related. Oh my goodness, I'm not stopping the podcast. We are full steam ahead. But I am going to be teaching other people about podcasting. I am so excited about this. I've been doing this at conferences for a couple of years now. I've been doing a lot of one on one. And I finally decided to pull the trigger and do this as a business hub. Boy, all right. I won't be talking too much about that here. But if you follow me on social media, you will get all of the info. And if there are new ways to follow me you'll you'll find them all there.

All right, thank you to my editor, John Bukenas from audio editing solutions. Thank you so much for listening. You know, you mean the world to me and that I think doing this show is really a privilege. I'm thrilled to be doing it for another year. I can't wait to jump in. I'm Stacey Simms and I will see you back here in 2021. Until then, be kind to yourself.

 

Benny  41:08

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

 

Dec 22, 2020

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!

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode 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

Announcer 0:16
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
you know.

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
Oh, man.

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
It's complex.

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
less.

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
Ah,

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
no.

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
Oh god.

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
Yeah. 39.

Unknown Speaker 17:53
Hey,

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
Unfortunately.

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
All that.

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
green jacket?

Unknown Speaker 21:12
The anamorphic.

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
No, no.

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
Thank you.

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
Yeah.

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
we have

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
But

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
Thank you.

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.

Benny 46:43
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged

Transcribed by https://otter.ai

Dec 15, 2020

The new big-budget disaster movie Greenland comes out on streaming this week. It starts Gerard Butler as the central character, trying to save his family including his son who lives with type 1. Award winning screenwriter Chris Sparling had never put diabetes into one of his movies, but he knows all about T1D. His wife is Kerri Sparling, writer of the very popular, and now archived, blog SixUntilMe.

Stacey & Chris talk about writing something personal into a movie and then handing over control to a different director and producer, as well as what it's like to try to make movies during COVID restrictions.

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

Kerri Sparling interviews Chris for Children with Diabetes 

In innovations –JDRF begins at-home early T1D detection.

More on the new JDRF T1Detect program 

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription (rough transcript, computer only - check back for proofed version)

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop, created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, there's a new movie all about a big global disaster and it features a main character with type one. award winning screenwriter Chris Sparling had never put diabetes into one of his movies. And he was a bit concerned about how it would all turn out.

 

Chris Sparling  0:41

I became so in a way overprotective of getting it right. And it being portrayed right because the last thing I wanted to do was to finally incorporate diabetes into a movie of mine and for it to end up being portrayed wrong.

 

Stacey Simms  0:55

Many of you already know Chris, sort of his wife Kerri Sparling wrote the very popular blog six until me for almost 15 years. We talk about diabetes in the movie and at home and about the entertainment business during this time of COVID

in innovations JDRF begins at home early T1D detection.

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

Welcome to another week of the show. I am so glad to have you here. I am your host Stacey Simms and we aim to educate and inspire about diabetes by sharing stories of connection. Something different This week, we're going to talk about Greenland. This is a movie it's releasing in the US on video on demand it stars Gerard Butler and Marina Bakkerin who you probably know from the Deadpool movies. I put the trailer in the Facebook group and Diabetes Connections of the group. But the basic plot is that these are estranged parents, maybe they'll get back together, but they are working on their marriage just as a world ending cosmic disaster happens. And wouldn't you know it, their son has type one diabetes, so diabetes, type one insulin, this all becomes a plot point.

Now we've talked about this a lot before so many films and TV shows have gotten diabetes exactly wrong. But Greenland has a big advantage. And that is as you heard in that opening tease, and that screenwriter Chris Sparling, whose wife lives with type one, we will get to Chris in just a moment.

But first Diabetes Connections is brought to you by one drop and getting diabetes supplies is a pain. Not only the ordering and the picking up but the arguing with insurance about over what they say you need and what you really need. Make it easy with one drop. They offer personalized test strip plans plus you get a Bluetooth a glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door no prescription or co pays required. One less thing to worry about not that surprising when you learn that the founder of one drop lips with type one, they get it one drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the one drop logo.

My guest this week is an award-winning screenwriter. He is someone that I've never met, but I feel like I kind of know because for many years I and many of you read about him in Kerry Sparling’s blog SixUntilMe. Kerri spent more than 14 years writing about her life with type 1 diabetes which included meeting and marrying Chris, who has been featured in blog posts about kids and family and everything you would expect. Kerri has stepped back from the blog to pursue other projects in her own writing. And Chris has a big movie coming out this week as this episode airs, Greenland, which debuts on American streaming this week.

Chris, thank you so much for joining me. Welcome to the show.

 

Chris Sparling  3:53

Thank you. Thank you for having me.

 

Stacey Simms  3:55

It's great to have you. I feel it. As I said, I feel like I kind of know you. So I appreciate you kind of taking the leap and coming on not a movie or writing podcast, but a diabetes podcast. So this should be really fun. What made you decide I mean, you've been writing movies for an awfully long time. What made you decide to put diabetes?

 

Chris Sparling  4:14

You know, it's something I've been wanting to do for a while this movie presented a pretty unique opportunity for me to do it for a couple of reasons. One, the movie is the first of what's called Greenland. And it's about an incoming asteroid that's going to hit Earth or comet, it's going to hit Earth. It's this existential threat that everyone on earth faces. So kind of by nature of that alone, there's a ticking clock built into the movie, right? It's just when this thing's going to hit you're trying to get to the bunkers in Greenland. I tried to get there safely and survive.

And so on the macro level there is that that large ticking clock at play, but the movie itself is different than say, deep impact or Armageddon in that it operates more on a personal level than those two movies do. You know it's not a movie checking in with what the government's doing to try to up the asteroid or anything like that, it's really more like the movie, the impossible if anyone listening ever saw that it's a great movie. And it's all to do with seeing it through this one particular family's lens, how they're going to survive this, this Cataclysm. So built into that I wanted to have a more personal, it's a more personal story. And I'd like the idea of having a more personal ticking clock as well.

And so the son in the movie has type one. And now that's not to say the only reason why I gave him type one is to say, oh, that'd be a cool narrative device is to add yet another ticking clock. But it also quite honestly, it just, as I said, at the beginning of this long winded answer is that it gave me You know, I've been wanting to do it for a while, you know, Kerri and I have been together for a very long time. So I've seen type one up close and personal for a very long time. And, you know, I think it's kind of, it's somewhat misunderstood, if not even known condition by a lot of people. So it was, you know, I'm kind of hesitant to use the word educate, because I'm not really trying to do that, but maybe just shine a light on it a little bit. And, you know, this was a, an opportunity to do that on a, I guess, a large screen, or one of your house.

 

Stacey Simms  6:08

But I'm really curious, as you said, This isn't a movie where you're going to take time to actually do a formal education about type one, just as I wouldn't expect a formal education about a comment hitting the earth, and you know, what would happen, but you do have to explain these things. And I'm curious, you know, how do you work that in, you know, I assume we'll see things like injections or a pump or something like that. But was it difficult to kind of write it into the fabric of the story without, you know, Hey, everybody, we're gonna talk about diabetes.

 

Chris Sparling  6:34

Now, it was, to a certain extent, because, you know, as you will know, it's diabetes, you know, it's sometimes can fly a bit under the radar. You know, I recently, it was kind of bizarre to do it. But it's fun, I did it, I did an interview with Kerri. And so we were talking like you and I are talking now. And as I told her, then, and I don't always know when she's low, I don't always know when she's high, you know, things are beeping and everything else. And sometimes she takes on a certain characteristics, when that's going on. And I do know, or if I see you're sweeping a bunch of juice or whatever, but like, but sometimes I just don't know. And so to kind of to represent that on screen is difficult, because if you try to go too far in one direction, or the other, it may start to feel very false and forced, and almost cartoonish. And I say 100%, didn't want to do that. But if you go too subtle with it, which diabetes can sometimes be a rather subtle condition, you know, at times, and, you know, if you do that, then it just, it doesn't register for the audience at all.

So to kind of dramatize that, what I did was I had the boy, the young boy in the in the movie, let's take one, I gave him a pump. And, you know, to kind of develop a shorthand with the audience, right out of the gate, there's a scene early on in the movie, where Gerard Butler who started in the movie, he's seeing that basically, he's been away, he, his wife had marital problems, and he's kind of they're trying to work it out, he and his wife now and he's coming back, he hasn't seen his son in a little while. And you see, there's a nice tender scene between him and his son, where he notices the pump, the insulin pump, and he says, you know, you know, basically, there's something to the effect of I do like that better than the shots. And you know, just kind of getting it across to the audience, someone who may not be as familiar with it as you are.

Or I might be what's like, oh, okay, I get, you know, I can understand that you're certain things, I have a certain amount of knowledge about diabetes. So yeah, it's not, it's small things like that along the way, I've no doubt there will still be things that some people watching, it won't fully kind of hook on to, and they won't fully get. But at the same time, I think there might be elements of it that people watching might be like, Oh, I had no idea. I had no idea that having diabetes would require something like that. Or even to say, the immediacy and the importance of insulin, it kind of where I spoke earlier about this massive macro level existential threat that they're facing. But they still have to get to these bunkers in Greenland, if they're going to survive. And there becomes a situation where this boy get he needs his insulin, because he gets separated from it. And it's like, well, yeah, the large scale goal here remains, but if we don't get you there safely, and again, I mean, just maybe telling maybe to a certain degree, informing the audience who might not know that insulin is not just something like, again, you take it whenever you don't know, I don't know what some people might think, like, you just take it once in a while you take it as you feel like it or I don't know, whatever the misconception might be,

 

Stacey Simms  9:09

that we eat a cupcake, you need your insulin, right? (laughs)

 

Chris Sparling  9:12

Yeah, yeah. I think if nothing else, maybe it'll open, not open people's eyes. That's actually wrong, especially maybe just kind of illuminate the topic a bit for some people.

 

Stacey Simms  9:19

You know, again, I said at the beginning, I'll probably say a few times. I know very little about the industry, the movie industry and and what it takes to write a movie and produce and get, but I would imagine that and you've done projects before, where you've been involved in every step, right, you've written and then you've produced it, or you've been more involved. But with this, you you wrote it as my understanding, and what happens after you kind of hand off your baby because the director can change things, right. The actors have to change things. I guess I'll ask it both ways. First about the diabetes. Did they get it right the way you had hoped? And then we can talk about the movie?

 

Chris Sparling  9:53

Yeah, well, I mean, yeah, I mean, first, even before diabetes, yes, that always happens. I mean, I've directed movies, I produce movies, all of which have been ones that I've written. So, you know, in those instances, I have obviously quite a bit of control over what the final movies gonna look like in this instance, having just written it. In other movies I've only written, you know, there's always an understanding that when you hand it off, essentially, you know, your depends on the project, quite honestly. I mean, sometimes just as the screenwriter, I am still very much involved with the production because the director or the producer probably see the value of having the person conceived it but but with this, I was involved but not see, like, on a day to day level, that's for sure. Look for the diabetes of it all. You know, I was happy with it.

And I was, there were a couple days when I was on set. And, you know, there was I just happened to be there. One of the days they're shooting a scene in in the grocery store and use the sons, they're shopping with his dad, and he's like, Hey, can I get some juice in the dad's like, yeah, sure, go get some. And I remember talking to the directors like Rick, listen, he's like, I was like, you know, my wife generally doesn't drink juice for fun. I'm not I mean, again, I know. She perfectly well, I should be no problem. She could if she wanted to just you know, but I was just I became so in a way over protective of getting it right. And it being portrayed, right, because the last thing I wanted to do was to finally incorporate diabetes into a move your mind and for it to end up being portrayed wrong. But in talking with Rick, he was like, No, no, it's cool. You know, I guess he was, meanwhile, he had his friend on speed dial who was the parent of a child of type one. He's like, No, no, I talked to them. I've consulted with them over and over again. And they said they get no, they let their child have juice if they want it and everything else I was like, and like, on an intellectual level, it made perfect sense to me.

But I was I mean, I was kind of like waiting that we hold on a second rate bumps, you know, so to fully answer the question, I think the director, the producer was I think they did a really good job. I think people watching the movie and will it be 100%? Right? I don't know. I mean, people might see it and say, Hey, I don't know if I agree with that. Or not. But everyone's situation in their approach is different. But I could say if you kind of widen the aperture a bit and take a look at it, I think people are gonna I think it does it handles it accurately. For the most part.

 

Stacey Simms  12:02

I would have been like Gatorade zero, and then he can get a juice box for later.

 

Chris Sparling  12:08

Yeah, I mean, that's I'm saying like, everyone's situation is different. Right?

 

Stacey Simms  12:11

So let's talk about movies for a little bit. Was this your dream job? Was this something you always wanted to do?

 

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Now back to Chris and he's talking about whether this is still his dream job. Does he still love working in the movies?

 

Chris Sparling  13:38

Yeah, 100% I mean, I started like eons ago, I started as an actor. And I lived in Los Angeles for several years doing that. And while I liked that, and sure, it would have been great to have ultimately done that it just wasn't really it's a really, really tough racket, trying to be doing the struggling actor thing. You know, it's fine when you're really young doing it. But at a certain point, you just feel like, wow, I have like no agency, I've almost no control over my future. You know, it's just really, really tough. So I just kind of felt I needed a little more control over my career. And so yeah, so to be involved in this industry in any capacity was was always my goal.

 

Stacey Simms  14:16

How does it work these days? I mean, people will say, well, you can write from anywhere. But I've got to imagine that the whole industry, if not moving slower, shut down. I mean, 2020 it's been a mess for everybody. But from a filmmaking standpoint, how did this even get done? When was I guess we'll talk about Greenland, but in general, like, how are things getting made right now?

 

Chris Sparling  14:36

I mean, yeah, Greenland was all written, shot well before the pandemic, but at the same time post production, it got shut down for a while in post production. So it didn't get completed, completed until in the midst of the pandemic, you know, and then as far as the release of it, yeah, I mean, it's supposed to be in theaters two or three different times, then take a push back and push back. But separate from that, you know, as 2020 is going on. I've actually had two other movies shoot during the pandemic, I just had one that wrapped two days ago in Albuquerque. And so for me personally, it's been a, you know, again, I mentioned earlier, but I can't complain people have like real, you know, things there, especially during 2020 people have had really awful things that they've kind of faced, I'm not certainly gonna, I'm not going to complain about having a movie pushback or not being able to visit set because of COVID. But yeah, I mean, it's been a bit of a bummer. That's, you know, I'm still human, like, it was a bit of a bummer to, to have two movies that, you know, I wrote and produced, and I was basically producing from, you know, one was an Ontario as a movie called Lakewood that I did with Naomi Watts. And then a movie that I just did born in Albuquerque that wrapped two days ago. And it's like, I was watching real feed, like real time feeds from the camera, in my house, in my home office. And my situation of you know, being very protective in particular carry, you know, having type one, and so we are, we're very, very locked down here and the COVID of it all. And so me going to set me being on set just wasn't really an option for me. So

 

Stacey Simms  15:58

that's interesting, though, I had no idea that you know, things, I guess a few we've seen TV shows, we've seen things being filmed a little bit here and there. But it didn't occur to me that full scale production or partial scale production, because you were in your house looking at things was going on. I don't even know what to ask, are they putting their masks on until they like jump in front of the camera? Is it locked down? Is it just a free for all? Because?

 

Chris Sparling  16:18

No, no, definitely not? No, it's it is I mean, I really wish, you know, for other industries that are still out there, and people are working, you know, maybe it's just not feasible, but the film industry to its credit, and television industry, they really have some great protocols in place. I mean, it's their zones that I like, I'm not going to get into like all the like, they were really, really strict measures. Because again, I mean, there are a lot of unions involved to this screen actors, guild writers, Guild, Directors Guild Producers Guild, so they're very protective of their membership for, you know, in the first place. And there's regular testing and everything else. And again, that's a luxury not I mean, not a lot of people have that. And then it depends on the size of the production. I mean, if you're talking about a big, let's say, Marvel movie, I mean, you could, in that instance, they're going to probably create a massive bubble, wherever and like they rent out an entire hotel, or like they do a Mission Impossible, where they literally rented out an entire cruise ship. And just everyone lived on the cruise ship off the coast of Norway while they were shooting there. So like, I mean, that that wasn't

 

Unknown Speaker  17:16

like that. But that makes sense. If you can afford Yeah, but

 

Chris Sparling  17:18

if you can afford it, yeah, I mean, it's budget plays a big role. But it's really, really difficult as it should be. Because it's there are people at risk. And yeah, the actors in particular, because, you know, when you're rolling the cameras, you can't have masks on anymore. So you have to be really, really strict and in how you go about your productions.

 

Stacey Simms  17:36

What do you think is going to happen with entertainment? In the next few years, I was having this conversation with a friend in terms of are we going to see COVID and people in masks and kind of that real life reflection in the next couple of years in sitcoms, where people are trying to reflect back to us what we've been through this year? Or do you think we just need a couple of years away from it? Before we can start seeing?

 

Chris Sparling  17:57

It's interesting, I've had that exact conversation with a lot of people, where is it going to be in stories? Is it going to be that you pretend COVID just never happened? Or do you incorporate it, even if it's not just like a major part of your story, it's just an element of life that everyone is familiar with it. So it's not if you just mentioned all they get someone gets sick during COVID, a couple years ago, you just off handed say it and there's no explanation because everyone in the world is going to know what that is. So it's either, you know, in I'm of the mind where, when we're out of this, I want to be out like I don't I don't want to look back on this and try to make it I certainly don't want to make it part of other people or right now. It's you see people trying to make pandemic movies and everything else. And I'm like, I want no part of that. I want no part of that at all. And that's fine. I'm not judging them for maybe wanting to I'm just saying for myself. Yeah, I'm hopefully looking to the future here and want to get past this and move on.

 

Stacey Simms  18:51

I'm with you. I think we'll know for sure if like a rom com next Christmas makes money and they're able to do like a meet cute with COVID. emasculate that takes off, then we'll know but I don't think it's going to.

 

Chris Sparling  19:03

Yeah, and I know like I my wife watches this is awesome. You know, I I saw a couple times where they're wearing masks on the show sort of there now, and that's fine. I mean, I'm not judging it. I'm just saying for myself,

 

Stacey Simms  19:15

I would but I'm with you. I want to be entertained right now. I'm not maybe as we get past it, we can reflect for but I could be meant, you know, it'll be interesting to see because there are different opinions about it for sure. Looking back to Greenland, I wanted to ask you, why did you give diabetes to the kid in the movie, and not the wife character? Was there? Was there a thought process there?

 

Chris Sparling  19:38

It's tough to say I mean, don't really recall. I mean, probably wrote this movie by now maybe four years ago, years ago. I don't know. If I decided at this moment. I'm going to make a movie and give a character in a family that type of diabetes would I make? I don't know. I mean, maybe, maybe again, just kind of speaking to this. Again, I'm hesitancy an opportunity to make some seemed like I was on a crusade and it wasn't I'm not on it at all. But like, I think there are a lot of people I'm gonna be frank, I don't think a lot of people know that kids can get diabetes. I just don't think that they, I think a lot of people, I think when they just hear the term diabetes, I think they mean type, they just assume it means type two, they don't even think that there is a type one or type two, they just think there was diabetes, and to maybe see a child, the 78 year old child with diabetes, maybe that kind of will at least, I don't know, in a waste stop some, someone long enough to say, Well, wait a minute, I never knew that. Little kids can have diabetes. For example,

 

Stacey Simms  20:35

I mentioned in the intro this interview that, you know, I kind of knew of you knew you a little bit from Kerry's blog, my son said he was 14 years ago. So she'd been writing the blog for a while when he was diagnosed and was one of the first things I found and like many people, because very, very popular blog, you know, I read everything she wrote, I feel like I knew so much about Kerri. And it was a huge help to me, even though I have a son. And it was something my spouse who has type one, what was that like for you? Was that like a different world kind of like, okay, Kerry's writing her blog, but you were mentioned it we knew about your family we do about things that are going on? I'm curious what your perspective on six and told me is,

 

Chris Sparling  21:11

I mean, I've always tried to be as supportive as I could with everything that she's doing in the community and elsewhere and on the blog. Yeah, that was no different. I think it speaks more to just how the internet itself has changed. Overall, we're, I mean, she started blogging when people didn't even, like, I want to say she was one of maybe two or three bloggers who were blogging about diabetes at the time. And this was, you know, that's at a time when the internet, like blogs were pretty new, and people weren't generally sharing, they weren't comfortable sharing personal information online, so much. And nowadays, that's all the internet is. And so like, so it's kind of a different space. And it was, it was a much more. You know, it wasn't it wasn't the juggernaut it is now I don't mean her blog, I mean, just like any kind of blog, or social media account, or anything else like that. So her writing personal details about, say, our relationship, and then our, you know, our marriage, and then our then our daughter at first, it just seemed we were okay with it for a while. And then just again, speaking for us, this is no comment on anyone else who might be doing this now, currently, but it's just for us, we just kind of decided that, you know, just wanted to be a little more closed off with the personal stuff in that way. So that's why if you go back, I'm sure in her blog, maybe when you started. I mean, there was a I remember a lot of stuff we she would talk about the stuff she and I were doing is kind of like a young couple going into New York City and hanging out. And, you know, so because it was kind of it was just kind of fun, and had almost like, you know, almost had like an early Facebook field where you just felt like, Hey, I'm writing this to my friends and family. Right? You know, as opposed to, you know, you write this stuff, and then all of a sudden, it's just, it's fodder for anyone to comment on or anything, I don't know. And it just became, I don't know, if it's a conscious decision or not, it just became more of like a Yeah, just to kind of pull back a little bit in that way on her on her blog and stuff.

 

Stacey Simms  22:57

Yeah, for me, it was almost like a teachable thing in terms of not just diabetes and learning about what an adult perspective was, but really did help me a lot gain perspective. And even when my son was two, it was also a really good kind of template almost in terms of sharing, because it did educate a lot of us along the way. Because that was before Facebook and social media. Really, I know, you're probably not gonna think about Facebook in college, and that was it. But I mean, for you know, in 2006 when I think she started as a five there was no social media really so right. It was a really good lesson in protecting your privacy, especially as it went on. But you know, it's it's a different world. People can't share enough some people. So isn't Greenland has been released, I believe in Europe and some other parts of the world because that's, I've seen it in some of the parenting Facebook groups. People have been chit chatting over it. Yeah. I asked if anybody had any questions for you. And most people just said, I loved it. But it scared me or like, Oh, my gosh, I didn't want to think about those kinds of things. But I did get a great comment from Sarah, who said, Stacy, can you tell Chris how much my nine year old son and I appreciate it? how accurate it was? Yeah, she has a question for you. She wants to know how difficult it was for you emotionally, to write something like this with so much personal experience from this disease that you've said it's been about four years, or maybe more since you actually wrote the script. But seeing as this really is something scary in terms of end of the world, and like a lot of parents I have like, Oh my gosh, if he's stranded or you know, it's even just like, it could be forgetting his diabetes back at the movies. It doesn't have to be a comet hitting the earth or plane crashes. Terrible. Yeah, we're all scared. Did you get emotional kind of writing this and thinking about carry? Yeah,

 

Chris Sparling  24:38

I mean, it's emotional. Now even watching again. For that reason. I think it's it. There's another and this is kind of what I was driving at with incorporating diabetes, where again, I didn't want it to seem like just some plot device. Like you said, it doesn't have to be a comet hitting the earth. It doesn't have to be a pandemic that we're all dealing with. But those things there's no Another whole layer for people living with diabetes or any chronic condition for that matter, any medical condition for that matter, it's it there is an another ongoing in a way unrelenting element to your life into the life of the people who care about you. You know, and that's, I think what I wanted to really portray is that it's like, again, even though these people are selected, and that's, you know, not giving away much they are among the very, very few people selected to go to these bunkers in Greenland. You know, someone made the joke recently, it's like, you know, Gerard Butler has saved the president so many times, it's only it's only fair that he's selected. But anyway, so they were and it's like, okay, that's, that's great. But like, that doesn't nothing changes it for at least as of current standards of medicine, nothing changes, the fact that this kid still needs his insulin, and it was emotional in that way. Because we've been there, you know, we've been in those instances, and I'm sure so many people listening have where sometimes stuff can get scary. You know, I talked about the subtlety of it before. And sometimes things can go from subtle or zero to 60 pretty fast. And that by itself, those moments are emotional when they're happening. And so to kind of to try to incorporate them into even something fake. I mean, you try your best to just make it feel real and realistic and kind of pour yourself into it as much as you can. So yeah, it's, it was a you know, so yes, sir.

 

Stacey Simms  26:19

I promise I will not get too nosy. And ask you lots of personal questions about Kerri. But I am curious, I don't talk to a lot of partners, spouses of partners and spouses of people with type 1 diabetes. And that's a different experience than being a parent or being a person with type one. I'm not gonna ask you to make a grand statement, you know, what have you learned? or What advice do you have? But I am curious, when you met Kerri. And this is a long time ago, as you said, I'm, I don't know if you can remember. What did you think about diabetes at the time? Were you really worried about dating and then getting very serious with someone who had something like this? Do you remember?

 

Chris Sparling  26:55

Yeah, I do. I had a very limited, very limited exposure to type one, only because a good buddy of mine, he had been for a little while dating a girl with type one, prior to me meeting Kerri. And the standout thing was that she was low one time, and she threw a pumpkin at him. So like, that was my introduction to type 1 diabetes, that sometimes when you're low, like you can kind of like your behavior can be you know, not like, I don't know, something you come out of here, we'd like you to depending and, and she just happened to get like, very aggressive for some reason that that is, and I was like, Wow, so that was a completely rough and probably ill informed introduction to diabetes. And then I met Kerri. And, you know, thankfully, she never threw a pumpkin at me. But But yeah, I mean, it's so I learned it a lot from just being with her and being around her and see how she manages the disease. But I mean, this, the thing is that I met her God, I mean, she must have had it for about 18 years, 15 years, some anywhere from 15 to 1819, whatever it was, before I met her, so she was very accustomed, you know, to dealing with this as an adult, because naturally got as a child, and then I should say, naturally, she got it as a child. So naturally, her mom and her dad, were helping her as a child, but then she, I met her as an adult. So she has several years of managing this disease on her own. And so it was kind of like I had to, you know, again, this is just specific to my relationship with Gary, I'm not trying to map this onto how other people do their thing. But like, I learned the boundaries in a way of like, what is the best way for me to be helpful in these situations. And even something simple, like I learned very early into this day, know that if carry is low, you have an instinct, when someone's not feeling well, for any reason. You're like, Oh, just sit down, sit out, you know, if you're feeling if you're feeling dizzy, whatever, she's the opposite. And then this is just her. She's the opposite. She doesn't want to she doesn't want to sit down. Because sitting down in a way, mentally allows it to settle in more for her. She, you know, she can't fully explain what she's saying. She's, like, I can't resist it, if I'm accepting it. And that, you know, again, it's not some woowoo thing. It just for her. That's it. So, like little things like that. Over the years, I've kind of and then bigger things over the years that I've come to say, all right, well, this is my role in this, I guess.

 

Stacey Simms  29:07

Getting back to screenwriting for just a moment. You know, there's a lot of I think a lot of people think that any job in the movies is super glamorous. And it's not as difficult as it is screenwriting has to be so difficult to me to think about. Because you're you're pretty much by yourself writing. But I'm curious. Do you have any advice? I mean, for anybody listening who would love to do what you were doing?

 

Chris Sparling  29:29

Yeah. Um, read screenplays. It's the best education you could possibly get. I mean, there are entire screenwriting programs. You could go spend a couple $100,000 on right now. And I'm not taking away the value of that but at the same time, I would put it right up there with just reading the screenplay a week.

 

Stacey Simms  29:46

How do you get a screenplay? Pardon my ignorance?

 

Chris Sparling  29:48

No, it's fine. I mean, just go online. Just Just go to Google and type movie screenplays and I'm sure like the vast majority of movies you've seen in like are you can read screenplays for

 

Stacey Simms  29:58

Is it still fun for you?

 

Chris Sparling  30:01

Yes, I this, I've been doing this for, like professionally for over 10 years now it's been my, my job. You know, just like anything else, things start to get a little old. I think for the next 10 years, I think I look forward more to writing and directing more as opposed to just writing. You know, I've directed a couple movies so far, but I want to do more of that I think in the next 10 years will say, yeah, I mean, I still love it. I love what I do. I feel very fortunate that I, you know, I tried for a very long time to break into this industry. And so like, I never lose sight of that. Yeah, I mean, there's certainly days that you just, it's just not happening. You're just trying and you're like, wow, I'm really awful at this. And so no, and, and other days, you're kind of like, Yeah, maybe. I think it's interesting, during, in the COVID of it all, like I've been, I remember, especially, you know, early early on in it, where everyone was on lockdown, and everyone's like, Oh, you must be getting so much done, you must be in so much writing done having all this time. And I was like, I can nothing done. I'm like, I can't get my head in the game at all. And that went on for a while, like creatively, I just couldn't get there. I guess, understandably, given the circumstance. But over time I was. It's gotten easier. I think more than anything. Now. It's just a time thing i'm sure Kerri would agree with this is that because of how we're doing things with, you know, with with us and our kids being you know, home from school, and that's just how we're doing it. It's just, there's a lot of us being here and having to having to kind of shuffle responsibilities back and forth. And so, you know, the amount of time I actually have, and that she has to take it worked on is that's pretty valuable commodity these days.

 

Stacey Simms  31:36

Yeah, no doubt. So before I let you go, is there anything that you can share with us that you're working on now, in terms of writing or things that haven't started yet?

 

Unknown Speaker  31:45

Yeah.

 

Chris Sparling  31:49

You can tell I, you know, I have a long gestating project. Basically, it's an adaptation of Stephen King's the talisman. I don't know if that one's ever going to happen, quite honestly. It's just I mean, it's something that it's it's Steven, not the name drop, but it's a Steven Spielberg project that he has been trying to do for like 35 years, there have been like, I don't know how many iterations of it that just just kind of come together, then he changes his mind or it doesn't happen. And then he moves on and then tries again, and like 510 years later, so who knows if that this one will follow that same trajectory. But that's one that I've been working on for a while, and then and a couple other projects. And then I'm just I just started a new script of my own. So in other words, not like a writing a script or adapting a script for somebody else. Right. You know, it's one that I'm hoping is going to be my next directing project. So,

 

Stacey Simms  32:34

so yeah. Okay, so we will look for greenlit, I will put all the information in the show notes where people can find it. Anything that we should look for that might be like a diabetes community, in thing I mean, now I have to look for the juice in the grocery store.

 

Chris Sparling  32:47

Yeah, there's that scene. I mean, there's the pump scene. You know, there's the scene where, um, there's a lot of them. It's not like it doesn't it's not like some small facet of the movie. I mean, it's so

 

Stacey Simms  32:56

cool. The mom isn't trying to read six until me like the panel there's no like

 

Chris Sparling  33:01

easter egg thrown in. Right? Um, you know, it's interesting though, because the the LED with this there's Kari asked me this question when choosing interpretive me which again, which is kind of bizarre. She was like, Why? Why does she's even curious. In the movie, the boys wearing an old like Medtronic pump in? She's like, why that old pump? Why not like a more modern pump even more modern Medtronic, but I don't know, I mean, quite honestly, I mean, it's probably the props department that chose that one. And the director approved it. And then they're also clearance issues where you can't just use a product, right? You'd have to get approval from the company. And so I could find out, I'm sure, but still, what I do wonder, and I might have done the same thing had I directed movie is that old model is older model PUMPS LOOK more medical, they look like medical devices where a lot of the more you know, more modern pumps will say they look sleek, they look like cell phones, they look like you know, and so I think for an audience, if the if part of the effort here is to kind of maybe shine a light on this on this condition, this disease, you certainly don't want them to be confused, where they see something like well, what is that? I don't know, it's a phone or what is that? That and, and I think, you know, that's, I don't know what that is. I don't know if that's a fun fact, I don't know how you classify.

 

Stacey Simms  34:15

Now, that's exactly what I meant that sorry. When because when we look at the screen now we're all gonna be thinking like, wait a minute, because I know my audience, they're gonna pause it, they're gonna look at it, they're gonna zoom in if they can, and you know what pump is that? And that's, that's a really good reason why?

 

Chris Sparling  34:30

I don't think it's a fun fact, because I don't know if that's the right way. Right? It's like a fun speculation. There you go.

 

Stacey Simms  34:37

You know, we're bonkers that way we'd like to know. So we'll see what happens. Chris, thank you so much for joining me and you know, for for speculating and for sharing so much of your time. I really appreciate it. Oh, thank you.

 

Unknown Speaker  34:54

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  35:00

For more information about the movie, the trailer where you can watch it, all of that at the episode homepage at Diabetes connections.com, wherever you are listening, if you're listening on a podcast app, you can always come back to the homepage and find out all of the info. Not every app has a great way to see the show notes. You know, we're on Pandora and Spotify and apple and everyone's just slightly different. So I like to keep it at home base. We also have transcriptions for every episode this year. And we're starting to go back and add them for every episode. So I'm very excited about that. I will also link up the carry and Chris interview that he mentioned, because Kerri scooped me she got the interview first. It was really fun. I interviewed my husband before for this show, and it's a little bit of a weird feeling. But it was a lot of fun to watch them and I recommend that especially if you're a big fan like I am of six until me and of Kerri. Up next we're going to talk about this new at home test kit from jdrf. First Diabetes Connections is brought to you by Jeevan hypo pin, almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where evoko pen comes in. It's the first auto injector to treat very low blood sugar gvl caple pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give g vo correctly. I'm so glad to have something new, find out more go to Diabetes connections.com and click on the G Volk logo g book shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash risk.

 

In innovations this week, where we talk about the latest and greatest in the technology sectors and new stuff in our community, I want to tell you about jdrf new T one detect this just came out last week as you're listening to this episode, if you're listening to it when it first airs, and T one detect is jdrf snoo screening education and awareness program. So basically, it's screening you for type 1 diabetes auto antibodies, I'm going to read a little bit from the jdrf website. They say until now t Wendy symptoms and a diagnosis often come out of the blue. Today, families can use testing to detect t Wendy early so they can plan and prepare with one blood test anyone at any age can find out before symptoms even occur. If they are at risk for developing to end, the test is easy, simple and can help save lives. So this sounds great. This sounds a lot like trial net, who we've talked to before, my understanding is that it's different. It's not quite the extensive test. And by that I mean, it looks like a different test, it's a finger prick, and you send the blood samples back to the lab. And then you get your results back. And they say you get next steps as to what they mean and what to do. So I'm hoping that that also means counseling of I haven't seen anything about that yet. Because, you know, that's the only that's one thing about doing these tests, any health tests by mail, right, you want to get the results. And then you want to have somebody sitting next to you telling you what you do with those results. So you're not feeling alone. You know what, if you have these antibodies, you don't know what they mean, you know what I mean? When you click through the website, it actually takes you to enable bio sciences, T one D auto antibody testing, and that's from whom you actually order the kit, you make an account with the company, you can check through your options on privacy, you can decide if you want to make your results available to jdrf. You can say Do I want bio sciences to have my personal health information, there's a lot you can do here. The tests are not free is my understanding. But I didn't see anything about cost anywhere on the website. However, I didn't get far enough through it to actually order the tests. And what's interesting here is that T one detect will be available to people whether or not they have a family member who has type one diabetes, and that's different from most of the other screenings, including trial net. So a lot of questions here. I have reached out to jdrf they have said that they're you know more than willing to come on. So now it's just a question of scheduling. So I'll be putting in the Facebook group Diabetes Connections of the group when we are ready to go with that, and I will certainly solicit your questions and we will get them answered. My biggest question is, why make this separate? jdrf I believe already helps fund trialnet. So why now fund something different when trauma needs money? So I'm going to find out I'm sure we'll learn much more. I am definitely in favor of more research and more testing because boy, if we could test everybody for type one, we could learn so much more about possible prevention and treatment and all that good stuff. So don't misunderstand my questions here for doubter cynicism. I'm just really curious about this new program and of course, we will find out more programming note for the rest of the year. I'll be honest, I'm not really sure we have about two weeks left to go for 2020 and I do have the shows planned out. We're going to do wait wait, don't poke me the Game Show that I aired at friends for life. If you didn't go to that winter conference, you'll be able to hear the show and you'll actually be able to watch it, I'll put it on YouTube the same time the podcast goes live. That's always a lot of fun. And then I have another panel that we taped earlier this year about the type one and type two community with some familiar faces to many of you. And that will be the last episode of 2020. However, as I've said before, there's always some interesting stuff at the end of the year. And if we're able to jump in with some more breaking news, or something really interesting, comes up, you know, it's not like I'm traveling This year, we're all sitting around on zoom. So we will bring you you know, any breaking news that happens in our community, and I basically just reserve the right to throw a new show in here or there. But we are almost done. Holy cow this year, and not much for reflection. I'm not quite sure that I'll do a lot on 2020 I think I need to get a little further away from it and further toward Good Stuff and Being with you all the view more in person before I can really properly reflect but I gotta tell you, I am glad to see 2021 on the horizon. thank you as always to my editor jump you can. It's from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  41:18

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

 

Transcribed by https://otter.ai

Dec 8, 2020

Benny sits down to talk about everything from which diabetes task he hates the most to what he loves about the diabetes community and much more. Stacey's son was diagnosed with type 1 in December of 2006, just before he turned two. This week he answers questions about Dexcom and pump site insertions and shares his excitement about turning 16 and (hopefully) getting his driver's license soon!

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

In Innovations, we talk about the new Hello Dexcom program

More info about Dexcom assistance programs here.

Listen to our episode with Stacey's whole family from 2016 here.

 

Join the Diabetes Connections Facebook Group!

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Episode Transcription:

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, 14 years ago this month, my son was diagnosed with Type One Diabetes. Benny joins me to answer a bunch of questions including how he psychs himself up for every inset and CGM change. He says, you gotta be fast.

 

Benny  0:41

Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed and if you like, leave the inset on your body. Like you're holding it there like, more and more you get in your head and like, this is terrifying. Why am I doing this?

 

Stacey Simms  0:54

Even now after all these years?

 

Benny  0:56

Oh, yeah, like if I don't do it in the first like, 10 seconds I have it on my body. I have to like take a minute.

 

Stacey Simms  1:01

He also shares what he remembers about moving to more independence. He was diagnosed before he was two. So it's been quite a change for us over the years. We also share what makes him nervous, what makes him happy, and a lot more

In innovations this week, a new program called Hello Dexcom may have more people trying this CGM. 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 along. We aim to educate and inspire about diabetes by sharing stories of connection. As I have said my son was diagnosed before he turned two my husband lives with type two diabetes. I do not have diabetes. I have a background in broadcasting and local radio and television news. And that is how you get the podcast.

I apologize right off the bat. My voice is a little rough this week. I have had some kind of lousy cold since Thanksgiving, I got checked for everything. COVID, strep, blah, blah, blah. It's just a regular old virus. And I don't feel that bad. But I probably don't sound that great. So I apologize for that. It really is hard to believe that 14 years have gone by. I remember that day like many of you do the diagnosis day, like it was yesterday. I've told a lot of stories about that day, I was working in radio, our lives were so different. My kids were so tiny. Some of you saw the photo I posted in the Facebook group of Benny and you many of you met him when he was tiny. And it's got to be jarring because I don't share photos of my kids all the time on social media to now see him looking so different. And he's 5’11. I mean, he's working out all the time. And we talked about that in the interview.

It's just amazing, right? You parents know you you hear your kids in the kitchen and you look up expecting to see you know, your seven year old daughter, and there's this 19 year old woman. What are you doing in my house? All the cliches about how quickly it all goes. But I'm always happy when Benny comes back on the show and answers questions that you submit questions that I have. It's amazing for me as his mom and it's become quite a time capsule. I think as we'll look back in years to come, and I hope it's helpful or maybe entertaining for you all. So we will get to that in just a moment.

But first Diabetes Connections is brought to you by One Drop and I spoke to the people at One Drop and I was really impressed at how much they get diabetes. It 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 when dropped diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.

If you've listened to this show at all, you know my son Benny was diagnosed just before he turned two back in 2006. So that makes 14 years of type one in my house. We've done shows with him before In fact, when we marked one decade with type one, I interviewed my whole family. I will link that episode up if you'd like to go back and listen, I talked to my husband and my daughter and got the sibling perspective, which was really eye opening for me. And I talked to Benny, which four years ago he sounded quite different.

I have been told that Benny and I are kind of quick, we may talk in a bit of a shorthand when we're together. So listening to this interview, you should know just a couple of things. Geoffrey we mentioned is a diabetes camp counselor who is terrific. He's a great friend. We both love him, no matter what we say here. Sorry. Geoffrey. Benny mentioned some issues with his tandem pump. They are being wonderful about this. And by the time you listen, it's probably all resolved. But I will tell you a bit more about that after the interview, Benny and I get a little silly. I don't know if everybody appreciates that But enough of you have told me that it's okay to leave in. So I did. I did take out some really over the top ridiculousness, but I put that in at the very end of the show. So you can listen if you want to, like, Alright, we start off with Benny, rummaging around my office.

So I sent you into my closet to find a mic, pop filter. And what did you come out with? What is that?

 

Benny  5:21

It's a USB hub. And what does that do? basically turns one USB slot into three or four.

 

Stacey Simms  5:29

I remember buying that because I thought I would use it at conferences, but it didn't really work out that way.

 

Benny  5:34

Well, I mean, your computer has, I mean, I guess enough. Like it's not a one of the Mac's that have one USB, this would be very useful for that. I do not have one of those, but I will certainly find a use for it.

 

Stacey Simms  5:46

All right. So how are you?

 

Benny  5:48

I'm great.

How are you?

 

Stacey Simms  5:50

I'm great. Oh, my goodness. So as we are sitting here, this is 14 years of type 1 diabetes. Today, this is your actual diversity is today.

Benny

I’m such an old man

Stacey Simms

Today's the Saturday that we went down to the hospital in Charlotte. And then later that night, when I was freaking out, you put your arm around me and you said

Benny

it’s gonna be okay, mom,

Stacey Simms

you said it's gonna be okay, mommy. Yeah, that was tonight.

 

Benny  6:12

I'm an old man. I'm so old. That's wild. I don’t remember any of that.

 

Stacey Simms  6:15

What's interesting, too, is we started your Dexcom on Christmas Day. 2013. So you had just turned nine? Yeah, or you were about to turn nine. And that's we started your Dexcom you must remember that.

 

Benny  6:33

And we were at grandma's house in the big screen room,

 

Unknown Speaker  6:36

right? Like that movie theater room.

 

Benny  6:38

And you were both with me. I was like, freaking out. And dad was just like, Alright, we're doing it wrong. And I was like, that was terrifying. Let's never do that. Again.

 

Stacey Simms  6:49

That was the old I was gonna say G5. But it was the G4. It was a G4 flat. No, it was a G4 pediatric which had the same inserter as the G5. What I wanted to ask you about was. Stop. You are impossible we need to do this on video one day. See, you've been doing that, trying to like eat the mic three years old, gross, fine. Well, you couldn't find any pop filters, because every time I talk to you I have to  get a new one.

So I figured you don't have a lot of like reflections with diabetes. we've, we've asked you some of these questions before

 

Benny  7:29

and I'm not the best at answering them.

 

Stacey Simms  7:30

Not quite a I'm not the most reflective person a meditative Sage if that's the right way of putting it. But you do have a lot of good things and wisdom to share. So I thought we'd take a different tack this time. Okay. All right. So here are some dumb questions.

 

Unknown Speaker  7:45

We love them.

 

Stacey Simms  7:46

And you have done your own will say, you have done your own pumping sets and Dexcom insertions I'm gonna say 2 to 3 years now I've kind of lost track, but it's been a long time. I can't remember the last time I did one with you. Which is worse, pumping set or Dexcom

 

Benny  8:02

Oh pump? For sure. Why? Tell me about it. Because the Dexcom is a little before the G5 and G for pediatric were terrifying. Yeah, they were like giant syringes and like you could feel the needle go in and like all you could feel it move the entire time.

 

Stacey Simms  8:17

Do you remember? That definitely let you finish the actual question. But do you remember the first time Geoffrey tried to get you to yesterday or so?

 

Benny  8:25

Are we friends for life?

 

Stacey Simms  8:26

We were at I think a Jdrf conference. It might have been a friend for life conference. But I think it was local. Because Geoffrey was there from our

 

Benny  8:34

local. Yeah, we were in the hallway outside the conference room. And he was like you either do it yourself or it's not happening. And that's actually how he made me do my first inset too. But that was that camp. Thank you, Geoffrey. You have traumatized me. He said the way he did it was just push up against the wall. And then like with the white part to go in, and then the clear part. he'd pull it up by himself. And I'm like, that's not how I would do that. And I was I was utterly terrified. I just remember walking up. Oh, you had I had it on my arm, right? And it was like the whole thing was stuck on my arm. And I was just like running around because I will I'm not doing this.

 

Stacey Simms  9:07

Yeah. If you're not familiar with how the G5 used to work, or the old Dexcoms you'd have to, it just looked like almost like a giant syringe a surrender, right? So you'd push down on one part and then pull up on one part. I'll put a video link in the show notes. So you can check that out. But it's very hard to do by yourself. So people got very innovative and use door jams. And well

 

Benny  9:26

I actually did it by myself. I mean, I got to the point where I could you just got to stretch your fingers.

 

Stacey Simms  9:32

But also you couldn't really do in your arm by yourself.

 

Benny  9:34

I couldn't I got to the point. Yeah,

 

excuse me. Um, it was just really fast because I'm so like most people like did it kind of slowly and then like pull it up pretty fast. But like I did it like all in one smooth motion so that I could actually do it with one hand on my arm. No, because I'm just that I don't

 

Stacey Simms  9:51

remember. I think when Geoffrey did it that day though. We wound up just removing it. Yeah, we just took it off because it was your conference with it sticking out of your arm.

 

Unknown Speaker  9:59

I mean Sorry to laugh.

 

Stacey Simms  10:00

I was like, You were scared. I was terrified. There's so much that you guys have to go through. That is so scary and not fun.

 

Unknown Speaker  10:07

So Geoffrey bullies me. All right.

 

Unknown Speaker  10:08

I love you, Geoffrey.

 

Stacey Simms  10:11

You said the inset hurts more now.

 

Benny  10:12

Yeah.

 

Stacey Simms  10:13

So how do you Wow Tell me about your procedure. Oh, you do it?

 

Benny  10:16

Well, the Dexcom. But let me get back to that. Now it's just a button. And it's not scary at all. Like you don't see the needle. You don't see anything but the bandage sticky part and the big orange button. It looks kid friendly. Like it doesn't look like it's gonna stab you. It's just a button. But the the inset like you can see everything. You have to like a bit. You're basically looking at the needle the entire time while you're unwrapping it. And let me just say that the inserts are way harder, way harder to unwrap than the decks comes. Someone should get on that. I'm with you. And like the spring mechanism, like you have to like pinch down on both sides. That's like, I just adds the aspect of like you are stabbing yourself.

 

Stacey Simms  10:59

Well, it's interesting, because you know, you have done more shots than people. Most people who use a pump will have done well. I don't remember any of them. You just did. You stopped in March. Oh,

 

Unknown Speaker  11:09

wait,

 

Stacey Simms  11:10

did that Tresiba. Oh, that you see.

 

Unknown Speaker  11:13

Let me rephrase.

 

Benny  11:14

When I think of shots, I think of like the the one with the orange test

 

Stacey Simms  11:17

syringe shots like the old Oh, yeah, that's true, because you were two and a half when we stopped that. Okay. But what I mean is, here's my question. As a person with diabetes, who has sharp objects in you quite often, it must be so strange to have to insert them and as you're saying, You're watching the needle the whole time you're wrapping the inset unwrapping the inset, and then you put it on your body. Isn't your body kind of telling you like not a good idea?

 

Benny  11:41

Yeah, no, I mean, absolutely. Like, it's kind of like sports. Like if you don't do it at that moment. Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed. And if you like, leave the inset on your body. Like you're holding it there. Like Like, more and more you get in your head and like, this is terrifying. Why am

 

Stacey Simms  11:58

I doing this? Even now after all these years? Oh, yeah,

 

Benny  12:01

like if I don't do it in the first like, 10 seconds. I have it on my body. I have to like take a minute.

 

Stacey Simms  12:07

That just makes sense to me. Because your body is never going to say yes to a needle. It's always going to want to send your body's not down.

 

Benny  12:15

This is not a good idea. crazy person.

 

Stacey Simms  12:18

Does the coughing still help?

 

Benny  12:19

Oh yeah, I do it every time. I don't know if I would need to anymore, but I still do it every time

 

Stacey Simms  12:26

and we should explain when you cough apparently you kind of confuse your body for minor pain.

 

Benny  12:31

I think it just distracting. Like I think if you like the whatever it is like the nerves receptor pain, whatever. Just focus on your lungs for like, a quarter of a second. And that's when the needles going in your body.

 

Stacey Simms  12:43

So can you now cough and stay still? Like that's the one thing that makes me nervous when I hear you coughing it's like picture you moving and then the needle getting

 

Benny  12:49

I never moved that much. It's like a little flinch. Like if your cough right now it's not like you're not gonna move six feet. We need a camera

 

Unknown Speaker  12:58

camera. He just like jumped off his chair. Maybe another time.

 

Stacey Simms  13:07

Right back to our chat in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen. And almost everyone who takes insulin has experienced a low blood sugar. And that can be scary. A very low blood sugar is really scary. And that's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar, Gvoke HypoPen is pre mixed and ready to go with no visible needle. 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 Gvoke logo. Gvoke shouldn't be used in patients with a pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.

 

People ask me a lot. How did I get you to do your own insets and Dexcom stuff? And I don't really think we had a method. Yeah,

 

Benny  14:00

I don't. I think eventually it was like, I think it was a mix of us saying like, I think we should start doing this and me being like, I should start doing this. It wasn't like one of us was like this needs to change. It was both of us kind of like we can't if we want to

 

Stacey Simms  14:14

I seem to remember in fifth grade your inset coming out once and me saying you're fine. Do it yourself.

 

Benny  14:21

I don't remember that.

 

Stacey Simms  14:22

Well, I'm glad because I felt kind of mean at the time. But me but you did it and you were really excited about it. And I think it's also as you got more independent. You didn't need me or want me hovering over Yeah. No, but you don't mean like when you used to go to Birkdale with your friends, and we would go places and do things. You know, like in seventh grade, you'd go to Burke does our local shopping center and you wouldn't if your insect came out or had an issue with like, you didn't want your mommy coming to your rescue. Well, I would have been happy to I know. But I think that helps too. So what It's a tough answer, though, because there really isn't an answer is how you did it.

 

Benny  15:03

Yeah, it's kind of just um, and kind of just happened.

 

Stacey Simms  15:07

I think the G6 made that easy too, because you had been doing the G5 as you said by yourself. But when I forgot we were on the G6.

 

Benny  15:13

How did you pretty me forgot? Like I forgot. I thought it was like, I

 

Stacey Simms  15:17

don't know. Am I keeping you awake? I'm tired. You are beat tonight. workout? Yeah, well, we're gonna talk about that too. But when we switch to the G6, and there's that crazy video of you getting all geared up to do it in May of 2018. We got the G6 and you and I did a live Facebook, where you inserted for the first time was that on the couch? I think I remember that was the kitchen table in the old house.

 

Unknown Speaker  15:38

Oh, I do remember that.

 

Stacey Simms  15:40

And that after that you I mean, you did that one yourself. And then it was easy. So I never did it again. I mean, I never did the G6 period ever fancy. Yeah. Well, it's weird. After having done everything for you for so long.

 

Benny  15:52

It just tell us. You said you can't do it anymore. You said you can stab your son anymore.

 

Unknown Speaker  15:57

Oh my god. Hey,

 

Benny  15:59

tell me. So

 

Stacey Simms  16:00

tell me about working out. So you your wrestling practice is sort of back pain. And you've been outside today. So much fun.

 

Benny  16:08

Working out in masks outside in 50 degree weather is the best thing I've ever experienced.

 

Stacey Simms  16:14

What happens when you work out with diabetes? Because you work out a couple of times a week outside of wrestling too. I know, to me, you kind of act very casual about it. But what do you take into account? Like, how do you do that?

 

Benny  16:25

I'm very casual about it. Yeah, I pretty much just go into workouts. Like, if I'm above 120, and I bring food. And if I go below 120 I eat food. And then wait till I'm above 120 and then go back in. That's pretty much it.

 

Stacey Simms  16:42

That's that's super casual. I mean, at least you pay attention and you know, do what you need to do.

 

Benny  16:46

That's pretty casual. You see, I think you're replacing the word casual with lazy. Lazy would be like I'm 90. Let's do this.

 

Stacey Simms  16:55

Oh, I don't I don't know. I mean, you want to have an actual workout for the time that you're there. So you take care of what you need to take care of.

 

Benny  17:01

Yeah, because if you didn't, then you die. Well, don't worry, or it's a waste of time come in energy.

 

Stacey Simms  17:06

Yeah. So here's another question for you. I'm curious though. after your workout. You know, occasionally that pump doesn't get put back on

 

Benny  17:14

will because I go to the shower and shower last like shower for like two to three hours. Look, hot water and music. Very nice. Okay.  Shout out to Tandem. Control IQ is very well, sometimes. You know, we're having some problems.

 

Stacey Simms  17:37

Yeah, well, we're just having some problems with Control IQ. We think the transmitter and the pump are not getting along right now. Each of the last four weeks have been ridiculous. We've gotten really used to control IQ.

 

Benny  17:46

It's great. It's really nice when it works.

 

Stacey Simms  17:48

Yeah. What is the diabetes chore that is the biggest pain for you.

 

Benny  17:54

Oh, filling a cartridge

that definitely filling a cartridge just

 

Unknown Speaker  17:56

because I said that for No, no, no.

 

Benny  17:58

It's definitely filling a cartridge pain in the Can I say a bad word? No? pain in the butt. Why? Because look, it's just annoying. Yeah, I have like 10 units less. Like at night. I have like 10 units left. And I'm like, Huh, I know, I have to go all the way downstairs and fill a cartridge. Right? You're all cozy in bed. Yeah. Like I'm about to go to sleep and I get I hear the stupid Animas alarm. But

 

Unknown Speaker  18:24

that's not the Animas alarm. You're First of all, whatever. You haven't had an Animas phone for four years.

 

Benny  18:30

Did I say Animas? Oh,

 

Stacey Simms  18:31

do you remember the Animas alarm?

 

Unknown Speaker  18:33

It was um, Beethoven?

 

Stacey Simms  18:35

Yeah. Because I can't. I can't hear Fur Elise without like.

 

Benny  18:41

But there was just like that very part. It didn't go on. It was like, Dude,

 

Unknown Speaker  18:46

that was it. Maybe they couldn't get the rights.

 

Benny  18:47

They? How did they How were they legally allowed to use that?

 

Stacey Simms  18:52

I think it's public domain. Is it? I think I think most classical music is Yes. Really? Yeah. You are not doing untethered anymore. We referred to that earlier. That's when you took about 50% of your basal from Tresiba long acting shot, and 50% from the pump with control IQ and with your body mind changing, right. But we didn't need to really do that. What did you think of that? Was it worth it?

 

Benny  19:14

I think at the time, it was very nice, because it significantly decreased the amount of times I had to change my cartridge. And that was really one of the main reasons we did it. And did it work like a charm. It did.

 

Stacey Simms  19:27

And it was also about changing that inset. Yeah,

 

Benny  19:30

well, that's different perhaps.

 

Stacey Simms  19:32

Well, no, I mean, I'm not talking about nagging you to change your inset, which I still do, apparently need to know. But I mean, we thought that there was something wrong with the inset somewhere. I don't know if you remember this. We tried different needle lengths. We tried different types. Right. We went to the longer needle and was just overloaded. It turns out by the amount of insulin we were trying to push through. So once we took half of the insulin away from the inset, it amazingly worked much better. Would you recommend untether You know, for a teen or somebody like I would

 

Benny  20:02

recommend it for someone that is using more than half their cartridge today will no more than a quarter of their cartridge a day and is a teenager if you're an adult?

 

Stacey Simms  20:12

Hmm. Why? Why do you think adults wouldn't do? Well?

 

Benny  20:15

I don't know. Like, it just feels like something that like, you know, teenagers have that like a hormonal imbalance. And I feel like it's just significantly easier to control it with a untethered,

 

Stacey Simms  20:27

I just felt bad. I'll be honestly I felt bad that you had to take an additional shot every day. Well, no,

 

Benny  20:31

I mean, I took that into like account mentally. Like I was like, I mean, is it worth it? And I was like, absolutely. It really was. I think that's one of the main things you should consider if you're looking into untethered. Like do you want to do another shot every day? And can you remember cuz I forgot sometimes. Yeah. But Tresiba is really forgiving? Tresiba is extremely forgiving.

 

Stacey Simms  20:49

Yeah. But it was amazing. The results were amazing. Not just with the cartridge changes, but with your agency and time and range, all that good stuff. Okay. So if it's a big if, if all goes well, you will be traveling to Israel, Summer of 2021 for four to four or five weeks.

 

Benny  21:05

Without anyone in my family.

 

Stacey Simms  21:07

Yes. But with camp with a camp group. What are your thoughts about diabetes? Are you nervous? Are you

 

Benny  21:14

a little nervous that I might run out of insets? Oh, and maybe insulin? I mean, I'm sure I won't, I'm sure we'll have an excess. I don't know, like being in a foreign, like, couple thousand miles away for the first time plus diabetes is? I mean, it's a little scary, like, truthfully, it's a little scary. But I mean, I think the fun and the the excitement significantly outweighs

 

Stacey Simms  21:41

I think you're very smart to worry about those things. Because unfortunately, you have to think about I think the most

 

Benny  21:46

thing, the thing I'm most worried about is my Dexcom not wanting to work. Oh, yeah. at Camp Carolina trails may rest in peace. The last year I was there, the second my phone was away from me, my Dexcom just did not connect to my pump once that entire week. And I really do not want that to happen.

 

Stacey Simms  22:06

Yeah, I remember that. That was um, that was 2018 2017, something like that. And we tried the Liebe re right, because I was kind of a backup plan. And then you were like, I'm just a diabetes camp. Forget it. And you did finger sticks all week. But that would not be fun.

 

Benny  22:17

Well, as I've made it abundantly clear. I think they give they their own you too much?

 

Stacey Simms  22:25

Well, they're ensuring your safety. Not everyone is is casual. But here's my here's

 

Benny  22:29

my thing. Here's my thing, right? If you have a Dexcom and someone like someone, a parental Guardian, gives it the Okay, why should you have to do a finger stick?

 

Stacey Simms  22:39

Well, because there are probably medical guidelines that they must go through, because they're not your parent that makes no sense. What if the parent

 

Benny  22:47

or guardian signs a waiver that says you can go completely off Dexcom?

 

Stacey Simms  22:51

Like, why would that not everybody does as well with the Dexcom as you do,

 

Benny  22:55

so that's why it's an that's why it should be an option to sign off to allow the parent or guardian to allow him I'm just so

 

Stacey Simms  23:01

happy someone will will take you that. I don't I don't sign anything special. I just say Will you put up with him? Here? Here? Take No no, no, no.

 

Benny  23:09

It's me putting up with them. Okay, it's very different. All right. Oh, my God. Look, I love the people there. But your policies I disagree with? I'm sorry. They're

 

Stacey Simms  23:18

shocked those the people that we know that are listening. Benny's never said anything like this to us. We've never heard him complain about anything. What a shocker.

You were Rufus. That was so much fun when we used to actually get together in person Tell me why it was fine. I

 

Benny  23:33

love that like the Okay, so, one, there was one day where I was walking down the halls and the second was with all the kids in there like, like the in the place where the parents sent them way to stuff dealing with them.

 

Stacey Simms  23:46

Like the child care theory.

 

Benny  23:47

That's what it's called. I see. I don't know, because I never got sent there because I refused. But like, those kids loved me. And it was it was so much fun. Like I really don't know how to explain it

 

Unknown Speaker  23:58

to me cuz you didn't have any training. Really? You've never been a mascot before the run in Davidson.

 

Benny  24:04

Oh, the JDRF Well, yeah, that was a lot of fun to do. The one the one with the kids though, was definitely the most fun. Like they just like their eyes lit up. They're like, Oh my God is this Oh my god. Oh

 

Unknown Speaker  24:14

my god, guys, look. Oh

 

Benny  24:15

my god. And you're in there and you're hot. And you're Oh my god, I'm so hot and disgusting in there. And I'm like, I'm like in this giant bear costume that all these little kids are hugging like a third of my leg. And I'm like, and I'm like dying inside. like half the time. I'm like genuinely smiling and the cat the other half the time I'm like dying on the inside because of how hot I am.

 

Unknown Speaker  24:34

But it was fun.

 

Benny  24:35

Oh my god, I do it 100 times. It was so much fun.

 

Stacey Simms  24:37

That's great. If you were to talk to those little kids outside of the room costume we don't want to scare them. Anything you would tell them about diabetes any Did anybody ever seen that helped you like anything that you'd like? Oh,

 

Benny  24:53

it's like I've said like 100 bajillion times and like I just said, Do what you want to do and don't let the stinking diabetes stop you. It shouldn't be something that stops you.

 

Stacey Simms  25:03

Alright, so I'm gonna I'm gonna make it more difficult because diabetes can definitely stop you, right? diabetes slows things down. Dude, how many times have we had to like change an incident a bit when I say stop? I

 

Benny  25:15

mean, like, like for a week, like you're just I don't want to do anything?

 

Stacey Simms  25:20

Well, I think it's important to talk about that because some people here don't stop and they think like, anything that goes wrong is a bad thing. And it's their fault, and they feel bad about it. And that's not what exactly what you mean.

 

Benny  25:31

Yeah, no, if something goes wrong with diabetes, the first thing you should think is it is not your fault. You did everything you could, something went wrong. Now, pick yourself out, figure out what went wrong, and try and fix it. And if it doesn't work, you track up someone else to help you.

 

Unknown Speaker  25:50

And you sounds like the Waterboy.

 

Unknown Speaker  25:55

That's some high quality h2o.

 

Stacey Simms  25:59

All right, you are almost 16

 

Benny  26:02

so excited.

 

Stacey Simms  26:03

Let's talk about driving. I know that you think you've got it all in the bag. Absolutely

 

Benny  26:07

have it in the bag. I'm

 

Stacey Simms  26:09

the best driver this oh my god knock wood. I'm gonna swing a dead chicken over my head. And say a Kenohora the bad luck you just brought on yourself.

 

Benny  26:15

Don't do that English. I don't think a word you said there was English.

 

Stacey Simms  26:20

Just you know, take it easy. Take it easy, my son. It's a big milestone in anybody's life. But certainly for people with diabetes. I mean, we've gone over our like little protocol. And oh, here's a question for you. It's kind of about driving. So this is the first time I remember in your diabetes life where you've said, just give me the glucose tabs.

 

Benny  26:41

What's up with that? Well, I never liked the flavor of glucose tabs. I always thought they were kind of gross. But you have to take into account the convenience of them, they won't burst like I've had a lot with juice boxes gone, they won't melt, like gummies if I don't touch them for three weeks in a compartment in the car. And they really don't

 

Unknown Speaker  27:01

taste that bad.

 

Benny  27:03

So when it comes down to it, I'd much rather have something that I can I know will be there when I need it. Then something that tastes better.

 

Stacey Simms  27:10

very mature.

 

Unknown Speaker  27:11

I know I'm so awesome.

 

Benny  27:14

Give me a card

 

Unknown Speaker  27:15

that you get your car. I got you a whole thing of glucose tabs,

 

Unknown Speaker  27:19

like the big ones. Yeah.

 

Stacey Simms  27:20

compartment already. That's

 

Benny  27:21

great.

 

Unknown Speaker  27:23

Orange,

 

Benny  27:23

orange, you glad I didn't say banana?

 

Stacey Simms  27:28

Sorry, I think we're good. What else? Should we What should we end on here?

 

Benny  27:30

What's it like? hearing other moms experiences with their kids with diabetes compared to your experience with me?

 

Stacey Simms  27:38

Oh, my gosh, it can be very difficult. Because I think I'll be honest with you, I think a lot of moms do a, quote, better job of managing their kids diabetes. And I have some guilt that I've given you so much independence, and that I haven't. No, no. juries not here yet.

 

Benny  27:59

The jury is definitely.

 

Stacey Simms  28:00

But I have some guilt that I haven't done as much as maybe I could have over the years. And I know that world's worst diabetes thing is a joke. But it's sort of kind of not sometimes. But on the other hand, I look at you. And I feel like while you may not be a perfect person with diabetes, you are not afraid of it, you respect it, you take care of it, but you're not afraid of it. And you don't feel You don't seem to feel guilt about it and you don't seem to be negative about it. You've never given up an opportunity because of it. And that to me means I'm doing okay. As you know, I talk to a lot of moms, especially in the Charlotte area with this this group that we have, and they're on the shortlist. It's it's a Charlotte parents. We have some dads, also moms, but it's it's a good question. Because I don't think um, and I think with with all parenting with your sister, too, I think that you know, there's no finish line. So I always feel like we could do better, we could do worse. But you know, if you guys are healthy and happy, then I feel okay. But it's a good question, because it's a really difficult one.

 

Benny  29:06

Well, thank you for coming to my podcast. We'll love to have you in about two weeks.

 

Stacey Simms  29:10

All right. Another one another question for you them. Ah, all right. We said how much we left control IQ stop. He said how much we love to control IQ. And I don't even know if you know what's coming down the horizon if I've kept you posted on the thing. What are you looking forward to in diabetes technology in the future?

 

Benny  29:25

The 80% thing?

 

Stacey Simms  29:27

Oh, and the next edition of the control IQ that will bolus you more robustly.

 

Benny  29:31

Yeah. Because while it works great, it is still not aggressive enough for me because I tend to rely on it a little bit more than I should.

 

Stacey Simms  29:39

Well, you, you know it would be really nice not to have to bolus for every meal. I think it'd be

 

Benny  29:43

really cool if they could find out a way to know exactly what and when I am eating. Well, there are some elders that thing that like senses when like you told me about the senses when you're moving your hand like

 

Stacey Simms  29:56

you know, there are some algorithms that are You're just gonna have to tell it you're having a small, medium or large meal, and it should be able to do all the work for you.

 

Benny  30:05

I feel like that's gonna that's too big of an umbrella of food. Because like if I'm having a small meal that could be like a bar, or it could be like a bunch of fruit. That's true. I feel like small, medium and large is too big umbrella. Well, it is. That would be a great first step, but definitely ensure my direction.

 

Stacey Simms  30:23

All right, so you're looking forward to more bolus power.

 

Benny  30:25

Yeah. All right. Two more automated bolus power.

 

Stacey Simms  30:28

Yes. I like that. I'm looking forward to that, too. I'm also looking for better insets As always, because we know those are the weak link of pumping. And I'm also really excited about the smaller cgms that are coming the deck.

 

Benny  30:40

I can't wait for the Tandem. The Tsport Oh, yeah.

 

Unknown Speaker  30:44

What is that supposed to come out?

 

Stacey Simms  30:45

COVID has knocked everything down. But probably something's coming

 

Benny  30:48

to a store near you in 2022.

 

Stacey Simms  30:51

My guess I mean, it's a guess is late 21. And that'll be fun to try because it will also allow you to try new sites.

 

Unknown Speaker  31:01

That's really funny.

 

Stacey Simms  31:02

all right, Benny, thank you so much. Happy diversity.

 

Unknown Speaker  31:05

Happy Hanukkah.

 

Stacey Simms  31:06

I want to give a gift to you. When this airs. It's gonna be an Hanukkah. Say goodbye, like people on your age on YouTube.

 

Benny  31:14

Don't forget to like and subscribe and share and comment down and make sure to check out my merchant the description below.

 

Unknown Speaker  31:19

There you go. Perfect. Bye fam fam.

 

Unknown Speaker  31:27

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  31:33

So I have to say, in between a lot of the silliness, I was really excited to have Benny's answers. We really, he told me a lot, I hope you got a lot out of that as well. And again, at the very end of the show, a couple of I guess you could call them bloopers, although it's just us being ridiculous and silly, if you want to hear that. So that's at the very, very end of the show.

I also wanted to mention the issue that he alluded to there with his Tandem pump, you probably are aware, he uses a tandem t slim X to pump with the G6 from Dexcom. And the whole system together with the control IQ software. We've had that since January of this year. And it really does work like a dream. It's a long story. But I'll try to keep it short here. And the basic problem is that the pump and Dexcom are not communicating as they have been for years and years. So it's really become a problem because the follow app and the Dexcom app are working fine. But the control IQ cannot work when it's not getting a signal from the Dexcom. So we've been troubleshooting this with Tandem for a couple of weeks now. They've been really helpful, but it's just taken longer than it might have. I don't know how to quite put this when I was more in charge. Because Benny is great. But he doesn't tell me right away. So when we troubleshoot and things are fixed, I think they're fixed. And then when I check in with him, oh, no, they're not fixed. So I really had to sit on him for this. And Tandem has been great with customer service. And I think we're almost to the end of fixing it. I'll keep you posted.

I think the only other thing from the interview I might need to explain is that he said something about camp Carolina trails is over, you know, the diabetes camp where he went, basically it was just kind of a change of camp in our area of the ADA had American Diabetes Association had run his diabetes camp like it does so many for many years. But things changed a couple of years ago. And now we have a local group that runs the camp. And it's pretty amazing to have that. They're really cool people and we'll have them on again, I'm sure to talk about all the good stuff that they've done because they do a lot more than camp. It's the diabetes, family connection. They have great Instagram accounts, some other stuff, but very cool people, we're really lucky to have them in this area, and they took over the camp and have done a great job despite what Ben he says he's such a complainer about that stuff.

All right, I want to tell you about our innovations segment in just a new program from Dexcom and Diabetes Connections is brought to you by Dexcom. As I said, we've been using the Dexcom G6 since it came out. It really is amazing. It is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warm up, the number just pops up. I know it sounds silly to a lot of you who are newer to CGM, that's amazing. It really is wild. to not have to calibrate we have been using Dexcom for seven years and it just keeps getting better. The G6 has longer sensor wear and the new sensor applicator as Benny said it's so easy to use. We still love the alerts and alarms and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

Innovations this week a new program from Dexcom. And of course when I talk about them or talk to them I always like to disclose as you've just heard, I just did a commercial for Dexcom and they do pay me to talk about them in the commercials of this podcast, but what you're about to hear is not part of the endorsement, they did not pay me or give me anything to talk about this. I think it's interesting. And I'd love to know your take on it as well.

This is a program called Hello Dexcom. And it is a new sample program. So what's gonna happen here is that people are going to be able to try a G6 system at no cost. They basically get it at their doctor's offices, it says - and I'll link this up in the Facebook group as well and in the show notes on the episode homepage - but it says whether provided to a newly diagnosed patient to get them started on CGM right away, or a CGM naive patient who wants the opportunity to try the device before committing to a personal system. The Hello Dexcom sampling kit allows people with diabetes to experience the life changing power of CGM, they get the transmitter the sensor and access to a digital experience. They call this a 10 day digital empowerment journey to ensure they get the most out of the experience and understand if CGM is right for their personal diabetes management.

Now, I of course had lots of questions. Look, we've said a million times CGM is going to be standard of care. There are 39 CGM systems in development, who knows how many are actually going to come to market in the United States or in other countries, but this is going to be standard of care for people with diabetes. So more people getting on CGM might be a great thing. I don't know, I am always concerned about education. I see it all the time. And I've you've heard me tell this to Dexcom. And to pump companies until the break, people get this stuff on their body, they go home, they don't know how to use it properly. They don't know how to use it to its utmost. They don't know how to use it so that it helps them thrive rather than holding them back. We just need more education. Obviously, this is a soapbox issue for me.

So I asked, and I'm gonna take you through the QA that I did with Dexcom. So this was an email back and forth. I'm going to read you my questions and their answers. If you prefer to read. Look, every episode this year has a transcript. So this will be in the transcript if you prefer to read it. I know especially with my scratchy voice, it might be kind of hard to listen to. It doesn't matter to me, if you want to read if you want to listen, that's going to be the next two to three minutes of the show.

So here's what I asked, Does the patient get the sensor and transmitter with no commitment or insurance coverage? They said yeah, since Hello Dexcom is a sampling program. It's available at the doctor's office comes at no cost to the patient. So I said since the transmitter lasts 90 days, what happens at the end of the 10 day trial period? Does the patient choose to continue on with the same transmitter? Or do they just throw it away? They said at the end of the 10 day sampling period. If the person chooses to stay on Dexcom they will be able to use that transmitter until it needs to be replaced. I'd like to know more I wrote about the digital empowerment journey. What is that videos personalized instructions. The digital journey they wrote is a 10 day email series that walks the user through how to make the most of the GS six. Once a user receives the Hello Dexcom kit. they'll receive instructions on how to set up their online digital journey. They go on to say they'll get the dexcom clarity app they'll share that with the physician once the sample period has ended. There are checkins in the form of email, which share more information they can get custom alerts and allow others to follow through Dexcom follow.

who is the daily check in with I wrote the patient's doctor a Dexcom employee? If it is the latter, is it tech support or a diabetes educator? emails are sent to the patient every other day, they wrote as part of the empowerment journey. But users will also have access to customer support to assist throughout the process. At the end of the sampling program, users will meet with their physician to discuss their experience and review their clarity results.

And finally, I wrote this might be an unpopular question. But I know my listeners will want to know if Dexcom can afford to give away this many sensors and transmitters. Why not lower the price for existing customers? Here's their response. A lot goes into creating this technology. It takes years to develop, study and gain approval. And then of course you have to market it raise awareness and encourage people to use it. The Hello Dexcom sampling program is part of that effort to raise awareness and adoption of Dexcom CGM to help people control their diabetes. They went on to give me some information about coverage. I'm going to link up if anybody does need help paying for their Dexcom. Or if you need information about Medicare and Medicaid, I will link that up as well.

But I think these are questions that need to be asked because from a sales point of view, this is a home run program, right for Dexcom. You go to your doctor, I'm not sure if I want to use a CGM. They have the professional ones they could put on you where you don't see it. These have been around for years and years. They put a CGM on you. But you don't look at the information. The doctor gets it and uses it to help with care. Or maybe it's a way to test out the CGM. But this is a much better way to test out a CGM, right when you get to keep the transmitter when you're done. So this is a really cool program. But I could also see some confusion because we know enough people who get educated by educators right they they meet with the CDE they Meet with a Dexcom trainer. And then three days later, they're in my group saying what happens? Why do I have down arrows? What does it mean? If I have signal loss? Where can I put this on my body and all the things you've seen in all the groups you're in? So I do think that we need so much more education.

But this is a really interesting program. What do you think? Hello, Dexcom? Is that something that your doctor has talked to you about? It's brand new in December, but by the time this episode comes out, it'll be out for a little while, love to hear your thoughts on that. And again, I will link up more information in the show notes.

As we come into the homestretch of 2020. I know most of you cannot wait for this year to be over. But I have a feeling there's gonna be a few interesting technology drops before the end of the year. That always happens in late December. So I am braced for it, which means probably won't happen this year, because I'm ready. But I do have some great interviews lined up, we are going to be heavy on technology in 2021, I have decided, it's what I'm really interested in what you're really interested in. Of course, we're going to tell the great stories from our community. And we're going to keep talking about access and affordability. But I am very excited to talk to new pump companies to talk to new CGM companies to check in with our friends and find out what's happening at companies like Tandem and Ypsomed, and Medtronic and all the stuff that's coming out in the next year or two. So we're gonna be heavy on technology. Let me know what you want to hear. If you work for one of these companies. Come on, reach out, we'd love to hear from you. listeners to this podcast are smart and savvy. And if you let them, they can help you. They're fantastic for focus groups and studies and they really get it so I didn't expect to make a pitch that way. But if you have a pump CGM technology diabetes company, email me Stacey at Diabetes connections.com we can definitely get you the ear of people that are hungry for information, want to hear from you and want to help you because we don't want you to make advances or what you think are advances. We don't want you to move ahead. Without us. We want our input to help make your products better.

 

Stacey Simms  42:03

thank you as always to my editor John Buckenas from audio editing solutions. Thank you, not only for listening, but for being there. I mean, I'm not just an announcer in this community, right. I'm a mom, you heard my kid. You know, we need you. We need each other. I'm honored a privilege to serve this community. And I'm also so grateful to be part of it. So thanks for always being there. For me. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  42:34

Diabetes Connections, is it production of Stacey Simms media? All rights reserved. All wrongs avenged?

 

It's like I've said like 100 bajillion times. And like I just said, What?

 

Unknown Speaker  42:54

Making a face that you just say it?

 

Unknown Speaker  42:56

Am I not allowed to go?

 

Stacey Simms  42:57

Fine. Take your time.

 

Unknown Speaker  42:58

I'll take a sip of tea.

 

Benny  43:01

That's That's her taking a sip tea. You're gonna laugh You are laughing. Tea. Yummy. Here's the tea.

 

Unknown Speaker  43:20

Oh my god.

 

Benny  43:21

I think you should not edit this at all. That's

 

Unknown Speaker  43:23

gonna go at the end. Oh, that laughing

Dec 1, 2020

The DiabetesMine D-Data Exchange is a great time to catch up on the latest technology and get a sneak peek at what’s coming. This is the conference where #WeAreNotWaiting was coined in 2013, which almost seems like ancient history now! We talk to founder Amy Tenderich about what's new and take some time to focus on their effort to reach more diverse voices.

Watch the videos from Innovation Days here

In Tell Me Something Good, a big diaversary to celebrate.. Stacey's son marks 14 years of type 1 diabetes this week.

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

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen the first premix auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, the DiabetesMine innovation days is always a great time to catch up on the latest technology and get a sneak peek at what's coming. This is the conference where we are not waiting. The phrase was coined in 2013 which almost seems like ancient history now

 

Amy Tenderich  0:44

stuff that seemed like such a pipe dream at the time like this whole idea of a closed loop system it was like kind of eye roll or like but now we have a very viable do it yourself. Homemade pancreas closed loop system which I'm using By the way, I've been looping now for quite a while and it's a game changer.

 

Stacey Simms  1:00

That’s Amy Tenderich, founder of  DiabetesMine who puts this conference on twice a year. This time around. There was also a big focus on inclusion and representation. Lots of info share

In Tell me something good a diaversary to celebrate 14 years of type one in my house. Betty was diagnosed the first weekend of December in 2006. And I just remembered a funny story from that week that I haven't told before. I was always the worst.

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

Welcome to another week of the show. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. As I said in that intro, my son was diagnosed with type one right before he turned to 14 years ago this week, my husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting in radio and television, local news. And that is how you get a podcast.

I'm going to be talking about Benny’s diaversary later on in the show, I will tell you a rather silly story that I just remembered about our first weekend home from the hospital. So about a week after we got home, and we went out we had theater tickets. I will tell you that story later on in the show. But stick around. It's a funny one. I think it just kind of sets the tone for how we manage diabetes and continue to this day. Oh my goodness.

I also want to let you know that friends for life is having another conference of virtual conference. And if you are listening as the show is first airing friends for life is happening this Friday, and through the weekend, December 4 2020. And along with the incredible educational opportunities and the wonderful social stuff that they have great meetups, I am also doing my annual game show I do a version of NPR is Wait, wait, don't tell me, which is a really fun game show. If you've ever listened to it. I do Wait, wait, don't poke me and I have taped that and we will be airing it and premiering it this Friday. So definitely come by and please check that out. I will link up all the registration information for friends for life from the wonderful folks that children with diabetes, just go to Diabetes connections.com and click on this episode. You know every episode has pretty extensive show notes where I link up information. And I also put a transcript now for every episode in 2020. And we're starting to work backwards. So hopefully eventually, I'll have a transcript for every episode of the show. Thanks for your patience on that.

All right, talking to Amy Tenderich from DiabetesMine in just a moment. But first diabetes Connections is brought to you by One Drop in One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drop glucose meter looks nothing like a medical device. It's sleek, compact and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.

My guest this week can be summed up I think in the motto of the conference. We're about to talk about learn, connect, collaborate, Amy Tenderich was diagnosed with type one as an adult in 2003. And not long after that she started the website DiabetesMine, which is a terrific source of news and information in our community. Seriously, if you're not reading it, I'll put a link in the show notes. Make it a bookmark. They even say that anymore. You know, put it in your reading list. They say that anymore. Make sure you check out diabetes mind because all kidding aside, they do a tremendous job on reporting in depth news information in our community if you're interested at all in technology if you want to learn personal finance stories to they do that it's a great deep dive and I rely on it for a lot of information, I share her on the show, of course, I always credit them. But in 2013, Amy started organizing the D-Data exchange twice yearly events that focus on technology and breakthroughs. This year, Amy added topics about diversity and representation in the diabetes community. It's something she was already working on, as you'll hear before, the events of this year brought it to the forefront for many people who maybe hadn't considered that before. But maybe it was already on it. Lots of information here and look forward. Of course, it's always great to catch up with Amy.

Amy, welcome back. Thank you so much for joining me to talk about D-Data. I really appreciate it. This conference is always so interesting to talk about. So thanks.

 

Amy Tenderich  5:46

Oh, thank you for having me.

 

Stacey Simms  5:49

first question really has to be just the difference this year in terms of making everything virtual. You know, I was in some of the conference presentations, I have to say this was a cool looking online conference. Do you mind share just a little bit about how were you pleased the way it went? I know at the beginning of the year, it must have been kind of crazy to regroup?

 

Amy Tenderich  6:09

Absolutely. It was it was been a big learning curve, obviously moving from in person to online, no matter what kind of event you do. I mean, first of all, there was this, oh, my God, I'm in the events business. And now we have COVID. And you know, what's going to happen? And there was some question about whether people would still be interested. But I feel like I found that people are really anxious to connect, because we're not going to all these in person events. You know, most of us feel like we're just sort of out there some kind of juggernaut on our own trying to keep up just by clicking on links. And so having a conference that allows people to connect, I think is you know, something that people are still really looking for, we had to do it the first time for our June event, because we do these D-Data events in June and then in the fall. And so you know, that was literally starting from scratch. Our event, as you may know, is sort of like a leadership forum, we always kept it at about 150 people Max, try to keep it somewhat intimate, so that it really put an emphasis on collaboration and interactive sessions. And you know that the networking part of it is really important. So we thought, how can we recreate that.

So it's not just people sitting and watching, you know, one presentation after another, especially when everyone's doing so much of that these days on zoom. So I've been working with the same event manager, actually, for years, a lovely woman who, out of San Francisco, who helped me find this platform that is really, in fact, they do use it for much larger events up to thousands of people. But the thing that's so special about it is it kind of recreates the experience of sort of walking into a live conference you like sit down at a table, and then you're able to immediately see and talk to the people who are at your table. And if you jump over to another table, then you're talking to that group. So it kind of looks like a zoom breakout room. But the idea is that it's you know, it's sort of oriented by table. And then what if you want to work together with the people at your table, there's even this whiteboard function that lets people have kind of a little sandbox to play in. And so that we do, again, a lot of interactive stuff, where we try to get people to talk with the group at their table and brainstorm things. So they were able to use that sort of shared space where you can draw pictures and you can post links and and you know, get creative. And you can actually capture whatever your your table does there as a, you know, an image and save it for later if you want. So it really it has this great functionality that allows both live presentations, pre recorded presentations, and then a lot of interactivity. Yeah, so again, it was a big learning curve. You know, it really helped me that we had done this once in June. So going into our two day event. Now in the fall, I had a better I didn't have to kind of recreate that whole wheel of just understanding how the online platform works. You

 

Stacey Simms  8:48

know, this conference is so well known, as you said, leadership technology, things come out. And we'll talk about this that, you know, years later come to market. But one of the things that you focused on early on and or even really, before the conference was this survey and discussion of representation.

 

Amy Tenderich  9:06

So yeah, what happened there? It's actually I'm kind of proud of myself and this was prior to the whole, you know, uprising around George Floyd and the big sort of, you know, visibility of the Black Lives Matter movement back in January, I was talking with Cherise Shockley and a few other people and said, You know, I feel like we should have a panel at our event to kind of delve into this I feel like this is a it's sort of something that's a little bit on the margins we talk about every now and then but this is so not solved, but I feel like people of color are really not represented and and Sharif was all over it said absolutely. We need to have this conversation and started recommending people and so I had already spoken to Mila Clark Buckley, who you may know and a few other people reached out to area Lawrence. And then of course, everything kind of exploded and it was like Okay, wow. And so, in our planning sessions, I basically kind of convened this group of advocates of And I said, Listen, you guys, I want to have a session, I think it'd be great to have a live kind of Roundtable. But, you know, what else can we do? Or how do you guys want this to run? What do you think would be meaningful? So what was so cool is that that group actually drove the whole content of it. So they said, Listen, we're happy to come and be on a panel and talk. But you know, we, again, people of color are not a monolith. Right? They can't represent everyone. And they sent me to get more voices involved.

So they had the idea, you know, can we do some kind of research? Can we do a survey so we can gather, you know, input from a larger, you know, swath of our community? And they also said, What about a video? What if we got people to, you know, because we had done this before for diabetes mind with our winners, and you're familiar with the Stacey, where we have these people who are patient voices winners, basically applied to have a scholarship. And then if they won, we flew them out to Northern California, and put them up to be part of the event. But in years past, we'd had those winners each do a little snippet, and just them talking about, you know, who they were and what their sort of advocacy soapbox was, was in the area of diabetes, if you will. So the idea was to do something along those lines, where we ask a larger group of advocates of color, to just say a few words about what they do and about their thoughts on you know, being a person of color with diabetes, you know, what's good, what's bad, what would they like to have changed, see change, I said, it's completely up to you guys. So I don't know if you got to see that. But we created this compilation video that started off our session. And it was really impactful, because it was just people saying, their bit, you know, what's disappointed them or why they do the work they do, or what they would like to see change. And it's just what, you know, I can't I talked about this session is sort of unveiling what's been left unsaid for too long. You know, I think that a lot of this was kind of going on behind the scenes.

And some of these people of color also told me that in the past, they kind of if they had a negative experience, they would kind of brush it off, they would just say, Oh, it's kind of a one off, it didn't. It's not necessarily racism, it's just, you know, I had a bad experience. But when they start to connect with each other and share these stories, they realize there's a lot of commonalities, you know, of getting brushed aside of being misdiagnosed of sort of not being proactively told about all of the latest, you know, technology options, because maybe a healthcare provider would sort of assume that they weren't going to be the ideal candidate for a pump or a CGM or something cutting edge. So, you know, it seemed that there were some themes. And when we saw this group of advocates, each recruited more people in their community. So we had a team of about 12 people who actually helped craft the survey questions and vet the survey, and then helped us get it out there to the community. So we had about about about 207 people who completed the survey, there's always some people who start and don't complete answers. And I did a whole presentation on sort of summarizing the results, which is also a video that's posted online that we'll be sharing with people. But yeah, it was just so eye opening. So so many of their concerns are similar to anyone with diabetes, right? They're worried about costs and access, and you know, finding a physician who's empathetic and, you know, who treats them as you know, as a partner in their own care, and all those things. I mean, those are things that I would say are across the board for anyone with diabetes or issues. But what also became very clear that they do not feel represented, we got very strong results that people said, both in marketing and in educational materials, they don't feel represented, they need to see more people who look like them. And that's everything from you know, skin. And he says to, you know, just, you know, seeing someone who looks like me, who might actually use that product.

 

Stacey Simms  13:43

Wow, I mean, so much going on there. And I know a lot of people were posting that they were really excited to not only be involved in it, but to see it. And I always hate this question. But what comes next for something like that?

 

Amy Tenderich  13:55

Is the million dollar question. And that's actually one of the things where you feel like you're sort of a victim of your own success because you have an event and people say, this was so great. What else you gonna do? I'm like, What do you mean, I'm still recovering from this.

 

Stacey Simms  14:12

Back to our interview in just a moment, but first Diabetes Connections is brought to you by Dexcom. And when you got a toddler with type one, you do hear rumblings for a long time about the teen years, you know, hit us full force a little bit earlier than most and I'm so glad that we had dexcom Benny's influence started going way up around age 11. He's almost 16. And it has been an absolutely remarkable transformation, I think is really the only word for it. He's so much taller, everything's different. I mean, I need to tell you what puberty does, but along with the hormone swings, I cannot imagine managing diabetes during this time without the Dexcom continuous glucose monitoring system. We've been able to react more quickly to highs and lows, see trends, adjust insulin doses with advice from our endo. I know using the Dexcom G6 has helped improved Benny's a one C and overall health, if your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Now back to Amy, where I have asked her what's next.

 

Amy Tenderich  15:19

So I don't know. But you know what the fun thing is, I mean, not only the fun thing, but I think the important thing is to not try to decide that too soon, the world is changing. And these events are always about kind of what is timely and what you know, we try to sort of take the temperature of, you know, what is boiling up hottest in the in the patient community and in the industry. So especially with our D-Data day, with the technology side of it, you know, we try to let the dust settle from the existing event and see where things are going. What are people talking about? Is it suddenly that smart pens are all coming out to market? And people are buzzing about that? Is it some of the latest trials for the closed loop systems? You know, is it sometimes it was like accuracy of, you know, cgms, that became like a big hot button. You know, obviously right now a lot of it's just about affordability and access, it's an always an ongoing issue. But we really try to and again, especially for the day to day I try to check in with the community, you know, I'm a conduit, but I'm not one of the hardcore developers, or the people who work on loop who make these incredible tools. So I always check in with them and say, you know, what is the community buzzing about what else is you know, who's working on something new and cool? How are people feeling about the latest commercial products have come out, or a lot of people you know, chattering about that they have a lot of input, you know, and just try to sort of find out what's happening out there and then address those things. And, you know, really keep it fresh and timely. So that we're really having conversations about the things that are like currently on top of mind,

 

Stacey Simms  16:49

it's so hard to predict, certainly, right, what's going to take off because you always have devices and people at this event that are as you said, so cutting edge and, you know, certainly the DIY crowd is always well represented. So it's hard to figure out what's really going to hit Were there any products or standouts, I saw a non invasive CGM of some kind like a bracelet that was there. I know Dexcom spoke there was the there was a loop link. I mean, was there anything that really struck you or that you want?

 

Amy Tenderich  17:19

Thank you for asking. So the fall event is actually this two day thing where one day is kind of our broader Innovation Summit, it was our first event that we ever did. And then the second day is D-Data where we go really deep on the technology. So that's why this time, the first day, we did a featured panel on telemedicine and like whole person care. That was very cool. That included Vita Health, One Drop, health first, and what’s the fourth person, fourth group that was there. I can actually look it up. But yeah, but we really because obviously telemedicine is now just medicine. Right? Right. Right. You know, it used to be the sort of add on thing that you could do if you wanted to, but you know, now it's really how care is being delivered. And the whole notion of like, Can we get past just focus on glucose numbers and lots of coaching combined with technology. And then they're trying to help people with like a variety of health conditions while doing really high quality diabetes care. So we have this great talk about it. And I'm sorry, January AI was the fourth company and they are this amazing new machine learning based company out of the Stanford area that is actually doing a platform currently for type two diabetes, but I think they will be expanding. And that group also did a demo on day two, the first day again, was kind of this broad look at like what's going on in healthcare and diabetes care, that's when we had our inclusivity and diversity panel, we also had an interactive group problem solving exercise where we got people to we had a little It was kind of like choose your own medical adventure. It was this video of this, like a sort of mock patient and had her talk about her issues that she's facing. And then there were sort of three choices of what you could recommend for this woman to do as sort of her first line of defense with her diabetes care. And then we had people discuss that at their tables and decide and then vote on which one they would pick first. And then we showed what how they played out in real life, you know, and in order of what people chose as the first choice, so we'd have to do some really cool stuff to get put people kind of in the shoes of a health care provider but also in the shoes of the patient as in again, we have a mix of people at these events.

So you've got you know, diabetes educators there and endocrinologists and even some like nutritionists and other people who are recommending stuff to patients and then you have patients who are you know, walking the walk and so it was kind of a cool way for them to discuss like, Okay, if you recommend this to this woman, like what are the pros and cons gonna be? How is this gonna play out? That was really fun. I we like to put people in the driver's seat and kind of see what they do. And a lot of this event is about the fact that you might have someone who is like, You know, really big has big following online as a patient advocate sitting next to you know, the CEO of some major pharma company, sitting next to you know, someone from FDA, and then all these DIY folks mixed in. And you know, we've got healthcare designers, and we've got educators and someone who might be the head of the you know, Joslin Diabetes Center. And so they get a chance to kind of interact and great networking, and I think really gives people a lot perspective and helps to break down barriers between these groups. You know, it really does.

 

Stacey Simms  20:31

I was there two years ago, and it was the first time that I was in the same room as somebody from the FDA. And I remember thinking, This is amazing. And it turns out that part of it was my fault. Because as they explained to me, when I asked like, how come I haven't seen you before, you know, basically, you can come to us, and here's how, and I have put that information out, and I will again, but it was it was one of those situations that you know, I've been in the diabetes community for 12 years at that point. And it just hadn't occurred to me that I could have access to somebody like that. And this is a, you know, a public servant, really. And they explained how to do it. And you know, what the deal was, and it was funny to me, because I while I have a podcast, I'm a diabetes mom. Right? So it was a really nice, you know, lowering of by perceived at this as this boundary. And I'm sure that many other people feel that same way. It's It's nearly as you said, it's a lot of interesting people in the same room.

 

Amy Tenderich  21:21

Yeah, thank you. And I mean, that's why I had this little panic attack when we, you know, when they close down all the Yeah, person events, like, how can we recreate that but, you know, as much as it gets old, being on online stuff all day long. It's amazing what you can accomplish, really. And you know, there are some, like I said, Great platforms that are being improved upon. So after we use this platform in June, we actually gave them feedback about what we would like to see. And they've made some progress, like, yes, it's really great.

So you're asking about the non invasive cgms and whatnot. So CGM, obviously is this burgeoning area. So our opening speaker for  D-Data this time on Friday, November 6, was Kevin Sayer, the CEO of Dexcom, talking about the future of CGM. And clearly, I mean, if anyone's qualified to do that, it's them. They've led the way. But there are dozens of kind of want to be you know, me to CGM companies coming out, they're doing all kinds of stuff from implantable to, you know, non invasive to semi invasive to just straight up Dexcom copies. We did a story diabetes might not long ago, something like 39 new companies working on cgms, you know, yeah, so there are many, many of them. Obviously, the non invasive or minimally invasive feature has been a dream for so many years. And there was this white paper written years ago called the deceitful Turkey, by an expert physician who had been researching it for so long, it's a very difficult thing to crack to be able to get something that is accurate and really usable. That doesn't penetrate the skin at all. But then you've got companies like bio link that are working on like they call minimally invasive with these like micro needles. So it's not drawing blood, but it's sort of like pokes into the skin very minimally. Mike Hoskins and I, who's my main man diabetes, mind, we were just talking about this the other day that it's probably time to do another story to sort of explain where we are with non invasive technology. Because Yeah, nobody's really done it yet successfully. But there are lots of companies that are just on the verge of having something really viable, which is exciting.

 

Unknown Speaker  23:27

I'd read that story. Yes, definitely.

 

Amy Tenderich  23:31

You know, especially now that you know, one of the big hot topics is the idea that CGM is going to become really, truly become standard of care and become more widespread use even among people who are not on intensive insulin regimen. So it's like what is going to help them be comfortable wearing it and get the most out of it. And we had another interactive session on Friday. And that was all about that it was a mock. We had people at their tables pretend that they were like a design group making a new CGM. And they had to pick their priorities for designing the CGM, and talk about why they did that. And were they trying to simplify data learnings for people? Were they trying to make it more motivational to use a CGM? Or were they trying to kind of like increase the consumer appeal and have it you know, have this kind of sexy look and feel. But I think a lot of people agree that especially for non insulin users, you know, the, the physical factor of the sensor is going to be a big deal breaker, right? But

 

Unknown Speaker  24:26

it Yeah,

 

Amy Tenderich  24:27

yeah, there's just so much going on. And you know, it feels like it never changes. But then again, if you look back, it's like, wow, things have really changed so much, even since we started doing this. And well,

 

Stacey Simms  24:38

and that's what I want to ask you about too. We are not waiting. The phrase, as you obviously know was coined at the D-Data exchange. I was at the first one in 2013.

 

Amy Tenderich  24:50

That's correct. So we started doing the Innovation Summit in 2011. So we had two of those events. And then the third year, it became clear that there were Are all these sort of people out there who were tinkering and you know, doing yourself the sort of technology savvy, it started with a group of D dads, basically diabetes dads who work in technology, who were like, Hey, we can do stuff with this. So and we decided that we would host a get together for those folks. And we were doing the summit at Stanford School of Medicine, that we just did it as a pre day to our summit, the day before, we got this sort of classroom, in this bio center directly across from the big hall, and just invited a bunch of people who were happened to be, you know, in or near the Bay Area, who would be able to come and we thought we'd have, you know, 25 people or something. And we were smashed in this classroom with like, 50 plus people, and there was all this excitement, and everybody was like, sharing their, what they're doing. And we kind of realized, like, wow, we're really onto something. And I want to give due credit to Howard  Look, and Brandon Arbiter, from Tidepool, who really helped me I, you know, they were just coming on the scene then too. And so we were having all these conversations, and I said, Hey, you know, I really want to do this event, you guys want to help me, like get this group together? So we worked on it together. And what happened is the next day at the summit, I had asked Howard to get up and sort of summarize what happened at this D-Data exchange thing. And he kind of, you know, presented this term, which I believe the first person to utter it was Lane Desborough who is also a diabetes dad, as you know, and then worked at Medtronic for many years, and then was at Bigfoot for a while. But he basically said, what I'm hearing here is that we're not waiting. We're not waiting for the, you know, industry or for the FDA or for anyone to tell us it's okay to do this. We can do it. We're doing it. Yeah. And yeah. And then it's, you know, just as you know, absolutely blossom from there. So,

 

Stacey Simms  26:38

as you look back at that, and it's been seven years, and it seems like as you had said earlier, it seems like things are moving so slowly and things would never change. And now Surely, there's a long way to go, right. It's not perfect. But now we have hybrid closed loops. On the commercial level, we have more DIY stuff, we have DIY stuff that might be going to be FDA soon, thanks to type pool when you look at the last seven years and your own diabetes management. And if you don't mind me asking, what are your thoughts about how far we've come since lane said it, and Howard wrote it on the whiteboard, you know, we are not waiting. It's pretty remarkable to look back at these seven years.

 

Amy Tenderich  27:14

It's absolutely remarkable. And it's stuff that seemed like such a pipe dream at the time, like this whole idea of a closed loop system, it was like kind of eye roll or like, but now we have a very viable Do It Yourself homemade pancreas closed loop system, which I'm using, by the way, I've been looping now for quite a while. And it's a game changer, you know, and now the industry is coming out with them, it's a little slower. And obviously, on the industry side, you know, they have to, you know, there's so much risk averseness they need to be really careful. So they're, you know, have to make incremental changes. But we're getting there, I think soon. Again, you know, the idea of just getting a pump without a CGM, or even a smart insulin pan without something connected to it would just seem silly, because it's like, of course, you want to have the whole deal so that you can both continuously monitor your blood sugar and then also get help or have it automated to decide your dosing your ideal dosing amounts. So we've come a hugely long way.

Insulin pens were done back then and talked about connecting them it took, you know, it's only very recently that the pen came out. And that we're really going to be able to actually use pens in a larger system, again, connect them to CGM and whatnot. And the apps obviously, becoming incredibly long way they were pre primitive back in the day. And, you know, I like to say the biggest problem was that so much of the stuff was being designed by people who don't, you know, not only don't have diabetes, but don't have any patient experience at all, it was being designed, it was just engineering driven, or clinically driven. And it wasn't livable, and it didn't solve real world problems for people, any devices or apps that just add more burden, it's not going to be continued to be used. And it makes absolutely no sense. You know, no, no

 

Unknown Speaker  28:56

doubt,

 

Stacey Simms  28:57

if you could look into your crystal ball for us just for the next year. Really, I know a lot of things were held up this year, because of COVID, things that we kind of expected in 2020 might be pushed to 2021. Or further, I won't hold you to it, we're not going to really make a bet on this. But I'd love to get your take on what you're looking forward to in 2021.

 

Amy Tenderich  29:16

Oh, thank you so much. So we were privileged to be able to host the first ever closed loop system showcase at our fall event last year. So the end of 2019, we had six of the companies that are like getting closest to having or already have a system out. And it was just amazing. You know, they came and they talked about the details of their algorithm and you know, how they, what the targets are set out and whether the settings are customizable. And then we had patients there who had used the systems either in the real world or in studies. And I just think that there's going to be so much continued improvement on these systems. One very encouraging thing is that the studies are no longer being done in some kind of clinical environment or they are doing real world studies where they literally go out Follow people while they actually go out and do sports and eat food and do things that real people do, you know, so I think it's hugely important for kind of the form factor and just to understand how they can improve on the kind of day to day living experience with these systems. So I'm super excited about that. I do think also that insulin pens, again, gone from just being another sort of thing that you use to stick the insulin in your skin to an actual tool that can help people figure out their dosing and help people keep track of their, you know, their whole diabetes management, regime, and, you know, be connected to, you know, your stream of glucose data, which helps you understand what's happening. So, you know, all of this stuff is just getting so much more real world usable. And I think that's really going to be kind of the linchpin going forward. And it's already hard now for family for people who are newly diagnosed now, to even understand how good they have it. Compared to what it was, like, you know, even when I was diagnosed in 2003, I mean, it was a world away. I mean, right?

 

Stacey Simms  31:06

What is the next event for DiabetesMine, I know, things are up in the air with COVID.

 

Amy Tenderich  31:11

You know, so our, you know, traditional pattern has been that we do the D-Data exchange twice a year, so, so again, traditionally, pre COVID, it was in June, on the Friday before the big at a conference, wherever that happens to be. So we've done it in New Orleans, in San Diego, and Boston, Orlando, all the places, right. And then in fall, we would do this two day event, which was always in Northern California, it was at Stanford School of Medicine for years. It's also been at UCSF School of Medicine for the last couple years. And that was the called the Innovation Summit day, which was kind of this broader look. So it didn't only have to be technology, it could be anything that was innovative, whether that's a community program, or whether we were talking about innovations in like coverage, or community events, whatever, and just a variety of different things about improving care. And then the D-Data exchange day, which was always the deep dive into technology. And that event kind of has a pattern to it. At least we've always done it so that we have a featured DIY talk. So we try to always get some interesting speaker from the DIY community to come and talk about something that they're working on. That's cutting edge and new. And whether it be about the community itself for about a particular tool, that we traditionally had FDA come and speak because it's like, let's hear from them. They're so important in all of this. And then we have this lineup of demos that we always do kind of cutting edge stuff. And that's been everything from as you mentioned, new CGM systems to like apps that motivate teenagers to I mean, we've in the past, we've even had some I don't know things for diabetes complications, like socks that can monitor your feet for neuropathy. But right now, it's it's been also a lot of AI, you know, machine learning driven platforms that are trying to help people better calculate their insulin doses are better predict what's going to happen when they eat certain things, or do certain activities, different ways to be able to kind of glean meaning out of your data. Generally, we do June and then we do like early November, it kind of dawned on me that if if Ada does not go back in person, this coming June, which they may not, then we don't necessarily need to be tied to that date anymore. I mean, the the idea originally was, you know, everyone's in town. And it started that very first year that we did the bigger D-Data it was ADA was in San Francisco, which is my hometown. So we're like, oh, everyone's gonna be here. So we'll just do this kind of afternoon thing before and get everyone together. And that's worked really well. Because physically, people are, you know, in from all over the world. But right now, everything's kind of footloose. Because of COVID.

 

Stacey Simms  33:44

well, thank you so much for coming on. And talking about all this and sharing these stories and for doing the conference and putting it all out there. And we'll link up as much as we can. If anybody missed it and wants to read all this stuff. It was really well covered on Twitter, I was following along the hashtag when I couldn't be there. And we'll get the word out. But he thank you so much for joining me.

 

Amy Tenderich  34:02

My pleasure. Thank you so much. And thank you for being part of it. And I hope you will join us again sometime.

 

Unknown Speaker  34:07

You got it.

 

Unknown Speaker  34:13

You're listening to diabetes connections with Stacey Sims.

 

Stacey Simms  34:19

More information about DiabetesMine the D-Data exchange. And that video we mentioned near the top of the interview the video about representation what people had to say, it's only five minutes, it's well worth your time. I'm gonna put it in the Facebook group and I will also link it up here in the show notes. Really interesting people definitely worth watching and worth possibly a follow if you're on Instagram or social media as well check them out. And I love talking to Amy because we always learn something new and see what new technology is coming. So of course more to come in the new year. Boy, I feel like there's a lot coming in 2021 that we've been waiting for. So I don't wanna get too off track or into the future but I'm excited and I'm Hoping to do an episode or two about a summary of what's coming. And I should also let you know I've also got interviews lined up with some of the people that are releasing really cool stuff coming up. We've got a lot to look forward to when it comes to technology in the new here,

okay, tell me something good in just a moment. And it's an embarrassing personal story, but I will share because we're friends here, but first diabetes Connections is brought to you by Gvoke HypoPen, and you know, almost everyone who takes insulin has experienced a low blood sugar, and that can be scary. A very low blood sugar. It's really scary. And that's where Gvoke HypoPen comes in. It's the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Gvoke correctly. I'm so glad to have something new. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon comm slash risk.

 

Tell me something good. This week is about my family. We are celebrating a diaversary my son was diagnosed with type one, as I always say right before he turned two back in 2006. Which means as hard as it is for me to believe we are marking 14 years and that kid is going to be 16 pretty soon. So the story I want to tell you here for Tell me something good. And if you're a new listener, he is doing great. Maybe that's the good news story I should start off with he is happy he is healthy is independent. He drives me bonkers. I want him to do more in his care. I want him to change his sites on the spot every three days and pre bowl is 15 minutes. Every time he eats. He doesn't do that. But you know what he does so much. He's super responsible, as far as I'm concerned. And he is almost 16. So for where he is, and what I was told could happen during the teen years. I really keep my fingers crossed, I knock wood I'll swing a dead chicken if you make me. I mean, I really feel like we have a lot to be thankful for. So having said that, this is a story about how we did everything wrong.

14 years ago, let me set the table. When Benny was diagnosed, I have a daughter. She is three years older than him. So she was just five. their birthdays fall in such a way that she just turned five he was not yet to. And my brother in law. My husband's brother was living with us. It was a temporary situation. He was with us I want to say for about, I don't know, a year, year and a half. He was between jobs. We had two little kids. We both worked full time. He asked you know Hey, can I come stay with you for a little bit while I get things settled? And we said please come down and be like a nanny. We can't have you here fast enough. And it was amazing situation. It really was uncle David was just a godsend, great guy and, you know, left us and went back to a full time job and a great life and relationship in a situation where he now lives too far away. If you're listening, David, he's up in Pennsylvania.

But he was there when Benny was diagnosed, which made our lives kind of easier. He had another caretaker in the house when Slade and I took Benny right to the hospital on that Saturday morning. That first weekend in December December 2 I always have to look at the date December 2 2006. David stayed home with Lea until we were ready to trade off and have her come visit and that kind of stuff. And we all learned how to do things together. So we came home Three days later, we tried to go back with our lives. Haha, you know, we were all kind of in the thick of things. And that Saturday night, the following week, Slade and I had tickets to go see a show, you know, I'm a big Broadway fan, love that kind of stuff. And David said you should go I've got this. I know just as much as you guys do. And he really did. I'll watch the kids go and your phone call away. So the theater in Charlotte, you know, we have one of these regional theaters where the Broadway shows come traveling through. It's about 30 minutes from us. Yeah, you really put the pedal to the metal 25 but 30 to 35 minutes. So we thought okay, this is good. We're all our doctor says go on with your lives. We're going to go on with our lives. David's got this. The show was Spamalot. By the way. It was you know, very funny musical comedy. And we decided to go and enjoy ourselves. We got dressed up. We went not 20 minutes into the show, maybe 30 minutes of the show Slade's phone starts buzzing, and he gets up and leaves if you are familiar with the show, this is just after he is not dead yet. And the lady of the lakes. So I'm sitting there watching this very funny show, being amused being entertained. But my husband is no longer sitting next to me and I know something's up right. If he had come right back, it might have been something easy just to question, but he's not back. I think I made it about halfway through the song that goes like this. I remember seeing that which is the song that really just goes on and on. When that ended, because I wasn't gonna run out of the theater when someone was singing people applauded and I booked it out into the lobby.

And Slade was on the phone, pacing and talking and pacing and talking. Here's what had happened. David had given Benny an injection for dinner or snack, I don't even know whatever it was it gave me an injection. And remember, at this time, we're using a syringe and we're drawing up teeny, teeny tiny doses. He's getting like point two, five, maybe for 20 carbs, I think I mean, who remembers these doses, but they were minuscule. They didn't have half unit pens at the time. And they certainly didn't have quarter unit syringes. I don't think they have that. Anything like that now. So unless you're using diluted insulin, which nobody had mentioned to me during his whole toddlerhood, you know, you're really guessing at the dosage, and you're trying to eyeball these teeny, tiny poufs and wisps of insulin. So David had tried to draw up like half a unit, I don't remember the exact dose he was supposed to give was, but he gave him two full units, which was bigger than anything we had given before. It makes me laugh now because to like, it's like a speck of dust for him now, but two units

 

when you Wait, 27 pounds is a huge deal. So what David and Slade had already done while I was sitting there watching people singing, they had already called the endocrinologist. And they had actually already gotten a call back. And that's what the phone call and the pacing, that's what was going on. When I had walked out, he was on the phone with the doctor. And of course, they advised check the blood sugar, give more carbs if needed. You know, nobody was panicking. So we didn't panic. His blood sugar was fine. David had checked it before he called he checked it after the endocrinologist called back, he was fine. It gets a little weird, because the dose had been given Well, before the phone call. It was one of those situations where David did it. And then A while later thought, did I really do that? He absolutely swears that he gave the kid two units. But two hours later, his blood sugar hadn't dropped. So my suspicion at the time was you didn't give him two units, you probably drew it up and just misread the syringe, which was very easy to do at the time, especially when you're distracted by a toddler and a five year old or the child didn't go all the way in, or something really weird happened because his blood sugar stayed steady. You know, we were checking with a meter. We did have a dexcom at the time. But he was checking him every half an hour. We left the theater, we went home. We didn't want him to have to handle this by himself. And how are we going to enjoy Spamalot, right?

 

Stacey Simms  41:54

We're worried about Benny. We're now home, probably close to three hours after the dose is given. His blood sugar was steady. We called the endocrinologist back and they said look, it's three hours pass the dose. If he hasn't dropped, he's not going to drop you guys are okay. So we being the terrible parents that we are looked at each other and said, you know, our friend was having a holiday party that we couldn't go to because we had tickets to Spamalot. David, do you mind if we go to the party now? I swear we did. We left we went to my friend's party. And my friend is only 10, 15 minutes away from my house. And it was what 10 o'clock at night already. So we only went out for about an hour and a half. But yes, I left my sleeping baby and he never woke up. And he never even woke up with all those pokes all those finger sticks to check his blood sugar, which I'm sure David did 10 more times before midnight, he slept through the whole thing. We were all worried but not worried enough not to go to that party.

Ah, I am the worst. We have always been the worst. But you know what he was safe. And our endocrinologist gave us the correct information told us what to look for helped us through it. And there was no sense as we saw it, not going to the party. So I know I'm a terrible parent. That's why I always say I'm the world's worst diabetes Mom, I still have not seen Spamalot all the way through. So maybe when it comes back through shark, I'll go back and make it through the first half of the first act. Oh my goodness. And hey, anybody dealing with a toddler or baby with type one, and those teeny tiny doses, I salute you. It's not easy. Getting an insulin pump makes it a little bit easier. But anything under the age of five is a circus of you know, type one is never easy no matter what age you are. But we're heading into 16 year old with it. And that means driving, which is an adventure for another time.

Before I let you go quick reminder friends for life is this weekend, the virtual conference. And if you were able to attend in July, you know that did an amazing job. If you were there, the one thing I will say that surprised me in a very good way was how much just schmoozing. We were able to do. They had specific zoom rooms for different ages, you know, parents and teens and young adults with type one, it was great. And I really wish I had put aside more time in July to attend the conference. Because I didn't really understand how much just hanging out and socializing we'd be able to do. So I'm putting more time aside to attend this one. And I hope you can check it out as well again, link in the show notes.

Hey, in the weeks to come, we're gonna have a couple of more episodes in December probably take one off the week of Christmas, even though I celebrate Hanukkah, but you know, we go with the flow. And I also want to just point out that this time of year, there are often a lot of approvals. It just seems like that last week in December, there's usually a lot of news. So stay tuned. I know a lot of delays happened because of COVID. So, you know, I'm not even sure what's been submitted to the FDA that was planned for this year. A lot of delays that way, but we will definitely be talking about it. Make sure you follow on social media for the latest and greatest. And thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much as you listen and if you've listened this long, I really appreciate it got a little chatty this week with that story about Benny and Uncle Dave. But But I appreciate you listening. I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself.

 

Unknown Speaker  45:10

Diabetes Connections is a production of Stacey Simms media, all rights reserved. All wrongs avenged.

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