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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"We're All Figuring This Out Together" - Improving School Care For Children With Type 1 Diabetes
08/04/2020
"We're All Figuring This Out Together" - Improving School Care For Children With Type 1 Diabetes
Back to school is stressful for families touched by diabetes, even without this year's incredible and unique challenges. There’s a new service in development to help make it just a little easier to let someone else take care of your child. Bob Weishar is the founder of a new company called Invincible. We’ll find out more about what he hopes to do and how this teaching and communication tool might help. In Tell Me Something Good.. graduations.. zip lining and sky diving! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms :00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Stacey Simms 0:23 This week, even in normal times back to school is stressful for families touched by diabetes. But there's something new in development to help make it just a little bit easier to let somebody else take care of your child. Bob Weishar0:34 And when you're trusting other people to do that, there's bumps along the way. And I think that's one of our goals is really to develop that trust with school with grandparents with other places that kids go so that families don't need to worry so much and then kids can just go about their lives and have fun wherever they are. Stacey Simms 0:52 That's Bob Weishar, the founder of a new service called invincible. We'll find out more about what he hopes to do and how this teaching and communication tool might help in Tell me something good graduations, zip lining and skydiving. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. If you are new, we aim to educate and inspire by sharing stories of connection. My son was diagnosed with type one right before he turned two. He is now 15. And like many of you, I have been back and forth and back and forth and up and down about school. I have a high school sophomore. That's Benny and I have a college sophomore and I'll talk about my daughter in just a moment and her plans. But boy school this year will look like nothing any of us have experienced before. our school system as I am taping just changed the plans and I'm sure they will change again. But here's what happened. We live in the Charlotte Mecklenburg school system Mecklenburg is our town County. This is an enormous school system with 150,000 kids. It's geographically large. It's a metropolitan city Charlotte with lots and lots of suburbs. I grew up just outside of New York City. And if you are from the northeast or probably other parts of the country, but definitely the Northeast, the school districts are tiny, right? They have a couple of thousand kids, maybe 10 15,000 kids, and then each town has their own system. We had the Yorktown school system where I grew up a couple of elementary schools, one or two middle schools and one high school. So you know, making decisions for a much smaller district, very different than making decisions for this gigantic one. I was prepared to have a lot of patience to go along with the decisions made as long as I felt they were safe. And I knew they were gonna have lots and lots of options they had already been talking about this all summer about maybe hybrid maybe in person may be remote with the opportunity to opt out at any time. About a month ago, our school board announced the choices that they would be making. They had three plans a UBC a would be fully in person B would be hybrid c would be fully remote. And you also had a different option where you could opt into a Virtual Academy. And once you did that your child was online for the semester, no matter what the school decided to do, if they came back, if they went, it didn't matter, you're you were on line for the whole shebang. So we had to wait for the governor to decide what to do here in North Carolina. And once that option was made, our school district pulled the trigger on Plan B, but they called it B plus. And it was an option that hadn't been on the table until that night. Basically, it was in person for two weeks, and then virtual for further notice. And what they wanted to do is see the kids they wanted you'd only go in for two days. During those two weeks that they wanted to see the kids they felt like they had lost track of some kids again, it's a very large school district. They wanted to give the kids technology and just wanted to make sure that I guess kids weren't being lost in the shuffle was what they said. But just today, new ruling came no two weeks in school. That was the Not safe. We're all virtual. So virtual until further notice in Charlotte Mecklenburg. And I'm telling you this long story to illustrate what you're probably going through as well, so many different decisions, so many choices to be made. If your child is in a public school, or a charter school or private school, or you homeschool already, there's nothing easy about this. I'm going to come back after the interview, and talk a little bit more about my daughter's college plan, which I think is pretty amazing. And it's I wish our municipality had this, I feel like she's going to be safer there than even in our county. So I'll talk about that towards the end of the show. I feel like it's such a difficult time right now. And we're putting so much pressure on ourselves as parents. So before we jump into the interview, I just want to say two more things. One, if your child has a 504 or IEP, just remember, it's still valid even if you're in a virtual situation. I don't know exactly what that looks like. It's different kid to kids, certainly. But it is valid and I know that in our school district where they the plans are good for two years unless you want to make modifications. They will contact As the semester begins, so I know we'll be having a conversation a couple of weeks into August or September school here starts in the middle of August, which is, again, very different from how I grew up or school starts after Labor Day, but your 504 or your IEP, they are good, regardless of how school is happening. And the second part is deep breath. I was on a call recently with a teacher who lives with type one. So shout out to Rachel, and she told us and I want to pass this along to you, your child can always catch up on learning, but your child needs now is love, support, your confidence, your calmness, as calm as you can be, your child needs you to just be there to be supportive, to be helpful. And to help them get through a situation and you can be honest about it that nobody has faced, the grades will come back, the learning will come back. But if we could take a collective breath as a community and help our kids who already have so much on them, and we have so much on us with diabetes, I think really it'll be so much easier to get through and when we're finally through this month. We can see, okay, you need to learn this, you need to catch up on that. But we will not have sacrificed that love and that support. And if you are a teacher or school staff who decided to listen to this episode to see if you could learn something from it. I do the same thing to you. I say at the end of every episode, be kind to yourself, man. Oh, man, you gotta be under so much pressure right now. Be kind to yourself and let's just get through this as best we can together. Okay, invincible coming up. We're going to be talking about this new program. But first diabetes Connections is brought to you by One Drop, and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops 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 Dropped plan also includes access to your own certified diabetes coach. questions but don't feel like waiting for your next doctor visit. Your personal coach is always there to help could Diabetes connections.com and click on the One Drop logo to learn more. How is the communication around your child's school experience you text or email or get a printout? Maybe you already use a diabetes app to keep track of food and dosing and care and other issues. Well, my guest this week wants to help standardize that make it a lot easier. Bob Weishar was diagnosed with type one in college. He shares that story and a lot more and joined me to talk about invincible Bob. Thanks for coming on. I'm really interested to learn more but but what a time to be talking about schools. Thanks for spending some time with us. Bob Weishar7:43 Yeah, really happy to be here. All right, Bob Weishar7:44 before we get into any questions about this school year, and how different it is going to be because I think most parents already feel that way. And let's just start what is invincible. Describe what this is all about. Bob Weishar7:55 Yeah, of course. So we started invincible really is our mission is to inspire kids with health issues. And we purposely picked a name that doesn't have health in the title. Because really, we think that there's a lot of opportunities that kids have with health issues to just live a normal life. But even more do do amazing things. And so, broadly speaking, that's our mission, obviously, there's a long way to go to reach that. And where we've actually started is, throughout the journeys that kids have is helping them in every stage. And so as kids grow up, we want to be able to help parents and their kids really grow. So we've actually started with schools and families as a place where kids spend most of their time when they're not at home. And we've been working for the past 12 months or so to really work with schools work with families to develop a product that connects them throughout the day and ultimately gets better care for kids and the support that they need, especially for elementary aged kids Stacey Simms 8:50 You were diagnosed as a college student though, and you don't have children with type one. How did you come up with the idea to do something like this? Bob Weishar 8:57 Yeah, it's well, a long time in the making. I think I was So I was diagnosed as a freshman in college in, I mean, I got to see firsthand what it was like to be kind of away from home on my own trying to figure this out. Luckily, I didn't go to the emergency room, I had kind of the symptoms I'm sure a lot of people have around just being alive and drink a lot of water, losing weight for college freshman was a weird thing. So that kind of took me off. But really, once I was diagnosed, went through all the struggles that I think families and lots of people go through when they're first diagnosed around just learning the disease and learning what to do. And I mean, I was just thinking about this the other day around, trying to go to a support group even and just seeing people that no one looked like me right and, and that really was kind of the place that I was meant to go learn and figure this out. And so that kind of stuck with me and that that planted the seed and it sounds weird now, but I always wanted to do something more with it than just manage my own condition and really after college got the opportunity to work on a couple different projects with some insulin manufacturers and develop some innovative programs around kind of chronic care. Management. So through there got the first itch to really apply my personal experience, but then also match it with professional. And then from there went to BigFoot biomedical. And so really, that's where between those couple of experiences got a lot of first hand experience around what to do what people need. But I always wanted to do something more, so Invincibles a long time in the making, and I give that backstory because it's there wasn't any one aha moment by any means. It's kind of 15 years in the making. I think I have lots of school presentations and things that the ideas kind of came as we went and really started it just as a way to figure out a way that we think that families and kids especially the support that they need, and go from there. Stacey Simms 10:41 What did you do at BigFoot, if I may ask? Bob Weishar10:42 Sure. Yeah, so I was a product manager and I was focused on the closed loop system. So started pretty early, early on there with the engineering team and built the product that went into Bob Weishar10:52 the clinical trial there. Again, as you said, there was no aha moment. But I know a lot of people who have worked or were working at the time of Bigfoot, and there are there are families They are right. There are adults with type one with children, but they were adults who have children with type 100%. No. Bob Weishar11:07 And Bigfoot was such a great place to really just be immersed in that in that world. And that was really the first time that I had been around more than one or two people at a time that that had been so directly affected by diabetes. And so being able to go to work every day with people that knew what they were doing. And I mean, my first week up big fight, I was actually trying the Dexcom for the first time, and I figured I might as well use technology, there's going to be a diabetes tech company, and just having all the tips and tricks and the people that knew what they're doing, but really just had being surrounded by people that were just so passionate for it was just such a great environment and such a great place to be. And so yeah, I think that that gave me such a great foundation to build from and grow with people in this community. Stacey Simms 11:48 So let's talk about invincible and what the vision is here. I have a child who's in high school who frankly, is at the stage where it's much more hands off, you know, but we went he was diagnosed at two we went into kindex gotten where you went to take care of preschool and then kindergarten. And as you know, and as most people listening know, there is so much that has to go on when you're trying to teach a school or maybe deal with a school that has no nurse or a part time nurse or a nurse who doesn't really know what it's like about type one, or who's overwhelmed by having 10 kids with type one, along with all the other kids that she has to take care of her he has to take care of. So I guess the first question I would ask you is, what are the problems with the difficulties that you're trying to help with? Because I know a bunch of them? Bob Weishar12:30 Yes, absolutely. So that was actually about the first six months of starting the company and figuring exactly that out. So as you know, a lot of parents have the horror stories, right of what happened at school and could be all age ranges, right. And lots of things happen. And diabetes is you know, it's just really tricky. So we started with schools. It's really just kind of a research project to figure out where can we help because we heard from a lot of families that school in particular, created a lot of frustration and I mean mix it in with kids are getting older and figuring out their own lives. We've actually spent the first six months really just going into schools and interviewing school nurses to find really their side of the story, because one of the key kind of hypotheses with it was that there aren't really bad nurses. There's just a lot of overworked nurses that are probably under resourced. So that's kind of what we went in with. And we didn't go in with too many assumptions, because we just wanted to learn and we kind of had the family side of the story from lots of interviews, and really just wanted to see what what is the school nurse side look like? And what does that look like, at the school setting? And so from a solution standpoint, as we start to think about this, it's really, when kids go to school, there's, there's so much going on, right? And schools are built to teach kids at the end of the day. And so what's ended up happening and what we saw in most schools is really, there's just very, very few health resources to deal with any sort of chronic health issue, especially type one diabetes. What we found is in the schools where where it works, usually it's a really just dedicated nurse who goes above and beyond. It's a family who's just leaning in and doing everything. They can A kid with just a great head on their shoulders. And I'll be honest, we saw that more often than not, we didn't see a lot of horror stories, but there's just it creates a lot of frustration for families, of course, that what they do at home can't be the same as what they do at school and, and that's what we're really trying to help is just bridge that gap between when kids are at home and families develop their routines to when they go to school. And one of the things we saw really early on was just all the paper notes and kind of process that that gets handled at school, that could just be so much easier. What we came up with is really starting to develop a way where families can start to get some of the information that's happening at school. So when kids are in the nurses office, and the nurses already giving them insulin and writing all this stuff down. We actually saw a lot of families exchanging like paper notebooks to have their kids carry around that just inherently bugged me. The last thing we want is his kids to be carrying a notebook around and feeling any more different than they might feel already. And so that was kind of the first place where we just said okay, this this is a very solvable piece of this And so that's where we've been working since is really starting to develop just those relationships with schools and families, and then a product that helps bridge that gap. Stacey Simms 15:06 So this is more than an app that takes place of my paper notebook, which by the way, I'm laughing as you said that because my son went back to daycare is a terrible parent. I am, he was not yet to. And he went back to daycare a week after we got home from the hospital, because my assumption was, they taught me the dummy who knew nothing about diabetes, I can teach these wonderful educators and caregivers who probably know a lot more than I do about children anyway. And they did and they were wonderful. And boy, we'll be lucky. But we had paper going back and forth. Of course, this was 2006 2007. But we had that piece of paper that the daycare center does, you know, oh, your child was nice. Today, your child went to the potty at this time. And your child's blood sugar was also this, like we just wrote it on the same piece of paper. Yep. Yeah. But I assume it's more than an app because there's lots and lots of blood sugar logging apps that tell me about the education component that you've mentioned a couple times. Bob Weishar15:57 So really, I mean, I think this probably goes back to that first experience that I had to go into a support group and what it takes. So we've developed first is really just the basics content. Our target audience for that is anyone who might be supporting a kid with type one. So think teachers think school staff, think grandparents or friends and family that need to know at least the basic information to keep kids safe. Our spin on it isn't...
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A Diabetes Game Show! The FFL-Wood Squares
07/30/2020
A Diabetes Game Show! The FFL-Wood Squares
It's our annual game show episode! This year, because of all the Zoom calls, we decided to play the HollyWood Squares! Of course, since this is a show for the Friends for Life Conference (FFL, pronounced Fiffle) we're calling it The FFL-Wood Squares! Huge thanks to our panelists: Kerri Sparling, Edward Hawthorne, Dr. Henry Rodriguez, Chris "The Grumpy Pumper," Moira McCarthy, Renza Scibilia, Oren Liebermann & Cherise Shockley. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Transcription In The Works
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Hydroxychloroquine and Type 1 Diabetes?! Why TrialNet Is Looking Into It
07/28/2020
Hydroxychloroquine and Type 1 Diabetes?! Why TrialNet Is Looking Into It
Before hydroxychloroquine was part of the national Covid conversation, it was being looked at in studies to see if it might help in the prevention of type 1 diabetes. Recently JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s Hydroxychloroquine (HCQ) Prevention Study. JDRF was kind enough to share the audio with us for this week's show. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. This week, we're talking about hydroxychloroquine. Yeah, that's right before it was part of the National COVID conversation is being looked at in studies to see if it might help in the prevention of type 1 diabetes. Welcome to another week of the show. I am so glad to have you along I am your host Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection my son was diagnosed with type one more than 30 years ago, he was a toddler at the time and now he is 15. My husband lives with type two. I don't have diabetes. I have a background in broadcasting local radio and television, we decided to get the podcast, which is now more than five years old. So if this is your first episode, thrilled to have you here, please go check out the website Diabetes connections.com. We have a very robust search we have more than 300 episodes now. So there are ways to get to it by date by keyword by subject matter. If you'd like to go back and start it episode one. You can use any podcast app as well. Wherever you listen to audio at this point, you can get this podcast. This week's show is unusual in that it's not an interview, as I usually do. Recently, JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s hydroxychloroquine prevention study JDRF was kind enough to share the audio with me. I found this so interesting like most people, I heard About the drug this year because of the whole conversation about COVID and could it treat it and that sort of thing. Many of you probably knew about it long before that in relation to lupus and arthritis and malaria, but I didn't know it was being studied at TrialNet. So you'll hear from Dr. Buckner in just a moment but first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the sleekest looking and most modern meter My family has ever used and it is not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strips subscription plans, pick as many test strips as you need, and they'll deliver them to your door. One Drop diabetes care delivered, learn more go to Diabetes connections.com Click on the One Drop logo. Dr. Jane Buckner is the president of Benaroya Research Institute at Virginia Mason in Seattle. She's also a rheumatologist who takes care of patients with rheumatoid arthritis and systemic lupus. She studies type 1 diabetes as well and is the co chair of the hydroxychloroquine study at TrialNet. Now, we've talked about TrialNet, and we've talked to TrialNet, or at least the people who work there. Many of you know that group as the people who will test your child's siblings or you or other family members for markers of type 1 diabetes, but they are tasked with the mission of finding out how to prevent type one. And so testing is just part of that. I mean, that's really where they get the ball rolling, but they have some incredible studies and I will link up more information and more episodes that we've done. We've done several with trial that I'm a big fan and I'm a big fan of anybody who takes part in their research going through those studies. Just having a family member tested. I think that's a big deal. And we should applaud everyone who does that. Quick note, again, this is more of a speech, right? I edited out some of the stuff here to Facebook Live the pauses, stopping as she reads the questions to herself. There are some beeps, there's some audible noises I couldn't take out but it's really fine. All right, here is Dr. Buckner, just after she has introduced herself and her role at TrialNet. Dr. Jane Buckner 4:25 And so we'll talk about a little bit about TrialNet first and then talk very specifically about this prevention of type 1 diabetes using hydroxychloroquine. Why did we pick this drug? How are we doing the study? And then also we'll talk about how to participate and take questions. Type 1 diabetes TrialNet is the largest international type 1 Diabetes Research Consortium comprised of over 100 locations and its mission is to prevent type 1 diabetes and stop disease progression by preserving insulin production before and after diagnosis. And so there's In a series of studies, there's a pathway to prevention. That's what we call a natural history study where we screen people who are at very high risk for developing type one diabetes, and we monitor them over time. We also do intervention trials in new onset diabetes. And we are now doing trials to prevent development of diabetes. The other part of the work we determine that where I've been really involved over the years is what we call mechanistic studies. When we do a clinical trial, we can go back to the lab and we can look at the blood samples from patients and try to understand why a certain intervention worked are help slow the progression of diabetes or loss of insulin production, or why it didn't work. And so that's where I've been involved over the years thinking about type one diabetes and what got me interested in this clinical trial. So why is TrialNet testing hydroxychloroquine to prevent type 1 diabetes? The first thing we need to talk about is thinking about type 1 diabetes. As a disease that progresses over time, we know people are born with a genetic risk, particularly relatives of individuals with Type One Diabetes children, or siblings of individuals with type one diabetes have a much higher risk of getting diabetes. And that's because of their genes. We know at some point along the way, in some people who have that genetic breast, their immune system gets activated, and they begin to develop immune responses that target the beta cells in the pancreas. What we've learned over the years, with the studies done by many scientists, but including those in town, that is that there's several stages to developing diabetes. There's stage one, which is where people have to autoantibodies but their blood sugar is still normal, and their pancreas is still functioning well, they don't know that diabetes, but in fact, they are on the road to developing diabetes and it's just a matter have time, at stage two individuals have these auto antibodies, that they now are starting to have abnormal blood sugars. And finally, at stage three is when we think of the classic clinical diagnosis of diabetes where individuals require insulin. Well, so the goal is actually, in this study, to prevent people from going from stage one, to stage two or stage three. The idea is if we treat people early at this very early stage of diabetes, where they have the immune response already targeting their islet cells that make insulin, if we could stop it from actually continuing, then we could actually keep people from getting clinical disease. So that's our goal with this study. So why did we pick hydroxychloroquine and in part of the story here is that I'm a rheumatologist and rheumatologists use hydroxychloroquine to treat many autoimmune diseases, particularly rheumatoid arthritis and systemic lupus, it's an oral therapy. It's a pill that you take once or twice a day. And it's used in these diseases and has been used Actually, it's a drug that's been available for over 60 years, initially developed to treat malaria. But in studies used by rheumatologist, it's been demonstrated to be very useful in rheumatoid arthritis and lupus. It's FDA approved to use in children and in pregnant women. And I have to tell you, it's not common a drug is considered that safe to do both of those. we know a lot about this drug. We know a lot about how it works, but more importantly, we know about side effects with this drug. So why should we think about it? Well, there's clear efficacy in lupus and rheumatoid arthritis that we know and I'm just going to say that one of the things we also know about lupus and rheumatoid arthritis is that there are diseases where people make auto antibodies that target different parts of them. body. We know those autoantibodies happen before individuals come in to see their doctor with these diseases and they predict development of the disease. There's been small studies that have been done that suggests that taking hydroxychloroquine before someone who gets a disease, let's say they have their very high risk for the disease, they have a relative who has rheumatoid arthritis or lupus or they have some initial signs of those diseases. And these early studies suggested that they may well prevent development of the full blown disease. And actually this idea of using hydroxychloroquine early before people develop clinical disease has also now part of large clinical trials in both individuals at high risk for rheumatoid arthritis. And a study for people at high risk for lupus and the rheumatoid arthritis study is called stop ra where individuals who have auto antibodies or have relatives and are at various high risk for the disease or start on hydroxychloroquine early and they're following them to see if they develop rheumatoid arthritis or if hydroxychloroquine actually prevents the disease. at trial that we were talking about what would be a good intervention to use to try to stop that progression from stage one to stage two and stage three, what would be safe enough for us to give children and people who were otherwise healthy, and also had made sense from an immunology point of view, and that's why we chose hydroxychloroquine. What we're doing in this trial is thinking about how type 1 diabetes starts, and that stage one where there's two or more autoantibodies, but normal blood sugar, and our goal is to stop at that point so that we can maintain a normal blood glucose and stop beta self destruction. The goal is to delay conversion to stage two and that would be having auto antibodies and abnormal glucose tolerance and to maintain that current level of beta cell function. And so the way we design this study was to actually look for individuals who are participating in the trial on that pathway to prevention, who we know have two or more auto antibodies, but still have normal glucose tolerance. So they're stage one. And because this drug has been used in in young children, we're able to start as early as age three. But we also are including adults as well. This is a study where it is placebo control, two out of every three participant will get the study drug, and the others, one third, we'll get received the placebo. This is really important in clinical trials, because we have to know not only if the drug works, but we also need to make sure that it doesn't cause harm. And this placebo control group helps us know both of those answers. This is a randomized trial. So a computer randomly selects who gets the study drug, and it's double blinded. That means no one knows Who is in which group until the end of the study and that includes the clinical coordinators, physicians who are participating in working with study participants. So some of the details and safety has become an issue that's much more on people's mind because of the use of hydroxychloroquine in the setting of COVID-19. And I can speak particularly to that as well. But let's first start by remembering that hydroxychloroquine has been used for over 60 years and is FDA approved for pregnant women and children. When we started considering the use of this drug. We worked within TrialNet with a group of infectious disease experts for study design, and we also monitor all the side effects throughout the study. Importantly, we know from treating particularly patients with lupus and rheumatoid arthritis, that adverse outcomes or safety issues are linked to the dose of the drug being used, the length of time that it's used other medications that a patient may be on. So when we do this study, we screen people who are participants for potential complications at the time that we randomize them. But we continue to follow for those at the time of the study. And I can go into more detail about this. Since we've been recruiting for this study. For over a year. Now, we now have a very good sense as well, not only from historical results with our patients from the rheumatology clinics, but also from the individuals participating in this trial. And just a few things about this trial. So, participants, this is a capsule that's taken by mouth as instructed. And our goal is to have people in this study taking this drug until they progress to stage two, that's the abnormal glucose tolerance, or stage three, which is diabetes onset. So it's it's a study where the participants are in it for several years. They have an initial study, visit, followed by three months, six months, and then every six months we see the participant in the study visits last three to four hours. And of course, all of our treatments and exams are provided at no cost. Here we have one of our study participants, Laila who's for taking her study medication, and you can check out her video online. Just a little bit about how to participate. The first step is to enter pathway to prevention, which is the TrialNet study where anyone aged two and a half to 45, who has a sibling, a child or a parent with Type One Diabetes is encouraged to participate and be screen. But we also broaden that to include not just your parents or siblings or children, but also Uncles, aunts, nieces and nephews. And we have quite a large group of participants in this and this gives us the ability to screen to see if you would be a person who has those two auto antibodies and would be qualify for this study. And to do that you can visit the trial on that site that we do home At home test kit. So this can much of this initial work can be done at home. And then we can have you in touch with people to understand if you would be a good participant for this. So I'm going to take questions now and I will go into more depth about hydroxychloroquine safety and try to answer other questions. The first question is, do you have any intervention trials currently recruiting? And so this is actually a really interesting question because TrialNet always wants to have intervention trials ongoing. So we have a series of trials in nuance at type 1 diabetes, and then we had just opened another trial in individuals who had to auto antibodies and abnormal glucose tolerance. Some of those trials are on hold, and that is because of the covid 19 pandemic there has been concerned about using medications that may suppress the immune response. So currently We are following the patients who have already received treatments. But we are not bringing on new subjects at this time. I would say our goal is to do that once we have a better understanding about how to move forward. But really interestingly, hydroxychloroquine is not considered immunosuppressive we started that trial in the summer of 2019. And we have continued that trial throughout the pandemic because it was felt that it did not put our our subjects at increased risk. And of course, at one point, there was thought that it may be helpful. We have asked our participants to continue taking their medications as prescribed throughout this period with the COVID-19. Yeah, so one of the questions is Could this be of any benefit to long standing diabetes patients who have no c peptide? And part of this issue is this beta cells that are stunned, so may be able to recover? That's one of those really interesting areas, and I think that the jury is out on that. Part of the reason that we decided to study hydroxychloroquine in these individuals who are in stage one is we think the role that hydroxychloroquine may play may stop the immune system, what we know is the immune system gets activated, and then it's a little bit like a steamroller, increasing and increasing in its aggressiveness against the body and against particularly the beta cell. And our hope was to stop it early before it picks up too much speed. And that's what we think hydroxychloroquine doesn't mean that it might not be helpful in this setting where we may have beta cells that are our stun and and it may become useful in individuals where once we've cooled down the auto immune response, maybe with another medication, that this may be a drug that we could use long term to maintain that kind of tolerance or quiescent stage. So I think we'll we'll have a better idea when this first trials done. Yeah, so the next questions is have have we seen any patient with negative side effects that you've heard so much about, and I know a lot of people are nervous because of what they've heard on the news, and so I kind of wanted to relate our experience. The first thing I could say is that we have our experience with our subjects in this trial, but as a rheumatologist, I have been prescribing this drug for, I hate to say it, but almost 30 years. So I've been been taking care of patients with lupus and rheumatoid arthritis who have been taking hydroxychloroquine throughout my career, because this is a drug that's been used for a long time. And I'd also like to say those patients take the drug, many of them for 10 or 20 years. So my experiences that and our experience with our subjects in this trial is that some people do have some side effects. Most of them tend to be more like some mild gi upside, initially, maybe a side effect. We also have to watch out for the eyes in this setting. We know that long term use of this drug can impact the eyes, so participants get regular eye exams as part of the study. So if there's any problem, we capture that quickly, and we have ophthalmologists who help us with that. There's also been concerns about cardiac arrhythmias with this drug. And that's been, you know, highlighted in the setting of COVID-19. I think it's important in that setting to understand that dose matters. And in some of those clinical trials, where we saw cardiac arrhythmias in COVID-19 patients, the doses were higher than we are using. The second point is that those individuals are under are extremely ill and in fact, are having some potential cardiac problems as part of their disease. So I think that's really quite different than what we see in a pattern in our patients in this trial and what I see with my patients with rheumatic diseases, that being said, the other issue is when you give this drug with other drugs that can aggravate or bring out a potential a rasmea We have been very careful throughout this study to have a large list of medications, we track those. And if it if one of our study subjects takes a medication we think could complicate it, we may hold the drug for a while. Right? And then one of the questions is about the dose, and we do select a dose for patients based on their weight in size. And the dose that our...
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Minisode #10 - "Why I Love My Insulin Pump" - Listeners Weigh In
07/24/2020
Minisode #10 - "Why I Love My Insulin Pump" - Listeners Weigh In
Why do you love your pump? We asked listeners to give us short reviews of the systems they use. This is sort of a companion piece to our last episode – when we went through how to choose a pump. That was more about process. We talked about how you can’t make a bad or wrong choice, and this episode really bears that out. Spoiler – every pump has big fans. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 Welcome to a bonus episode of Diabetes Connections. We're going to talk about why we love the insulin pumps we use, or really you use. I asked listeners to give me short reviews of the systems they love. And I cannot thank you enough for sending these in. This is sort of a companion piece to our last episode, we went through in detail best practices of choosing a pump, right not which pump but that was really more about process. You know you really cannot make a wrong choice here. This episode really bears that out and might be a disappointment to some of you I'm sorry to say but spoiler alert here. Every pump has big fans. I asked in our Diabetes Connections Facebook group who loves their systems, what do you love about it? Then I had one adult with type one and one parent of a child with type one to chime in on each pump system. So these are pump systems that are available in the United States. There are only three pump companies right now, Medtronic, Tandem and Insulet making pumps that are available in the United States. I decided no DIY for this because people who use DIY systems generally know enough and educate themselves enough about their options. And their options are different, right? So these are the commercially available pump systems and they're actually for all of them. the very latest, which I didn't expect and didn't ask for, but it turns out everybody who chimed in, is using the up to the minute latest system as we are recording here in the middle of July of 2020. If it sounds like these folks are reading, they probably are. These aren't actors, as they say they're real people. They weren't actually interviews. I just asked them to send me the audio. I gave them a little bit of a prompt, and then said, just send me some short stuff. Some people are a little shorter. Some people are a little longer, but I think you're going to get the idea pretty quickly. Let's start with Medtronic. And both of these folks are using the 670G system. Shelby 2:30 Hello, I'm Shelby from Elizabeth City, North Carolina. My daughter Caroline was diagnosed with Type One Diabetes on Thanksgiving Day. 2017. And she's now 10 and a half years old and thriving with a Medtronic 670G insulin pump. We got this pump shortly after her diagnosis in January 2018. I love the automated feature that adjusts the basal rates either up or down based on how Her blood glucose is trending. The pump is waterproof, which is great, since we do a lot of swimming in the summer. And if we're going to have extra activity, we can tell the pump to set a temp target which helps keep her from going low. The CGMs the continuous glucose monitor that works with the pump does not have a share or follow feature at this time. But we found a do it yourself workaround called Nightscout, which in my opinion is superior to the typical share follow function on other CGMs systems. I'm definitely excited about the new upgrades that Medtronic is coming out with, but for right now we're very happy with the overall control that she has with her blood glucose with very little need for micromanaging on my part or her part. So that is my thoughts on the 670G Phyllis 3:54 Hi, I'm Phyllis. I'm from the greater Boston area and Massachusetts. I've been living with diabetes for over 40 years and have been using the Medtronic Minimed 670G system for about three and a half years. Originally, I really was interested in the 670G because of auto mode. Although to be honest, I wasn't sure that the system could do better than I could with managing my diabetes. But I was pleasantly surprised. One of the areas that I was really looking forward to with some help is around exercise and the systems built in temp target of 150 really took the guesswork out of my workouts. So now three and a half years later, my time and range is generally about 85% with minimal effort when I put a little bit more time and pay attention to what I'm doing and eating that easily bumps up to 90% and that equals average A1C of about 6.2, 6.3 for the last three and a half years. I feel better about everything. I physically feel better and really excited about this system. Stacey Simms 5:06 Next up is Tandem. And both of these listeners, just like with Medtronic are using the latest model. They're using a tslim X2 with Control IQ. Chris Wilson 5:16 Hi, this is Chris from San Diego, California. I've had type one for almost 23 years and I've used a pump for five of those years. I use a Tandem tslim X2 with control IQ. I started with the original tslim upgraded to the X2 when it was released. And I've been through three major pump software updates in that time. The thing I like most about the pump is Control IQ, which is Tandem’s advanced hybrid closed loop software. I was initially drawn to the tslim by the touchscreen user interface and the rechargeable battery. The only thing I'd improve is the cartridge fill process which is a little complicated but gets easier with practice. Beth 5:50 Hi, I'm Beth and I live near Denver, Colorado. Our six year old has had Type One Diabetes for three and a half years. She started on an insulin pump six weeks after diagnosis And has been on a Tandem tslim for approximately a year. She's been on Tandem tslim with Control IQ for seven months. We love that it communicates with her Dexcom CGM and gives her more or less insulin as needed. The exercise mode is great for bike riding and swim practice and the touchscreen is simple enough for her to operate herself. She loves that her blood sugar and trend arrows are visible directly on the pump. With Control IQ. My husband and I have had the most uninterrupted sleep since before our daughter's diagnosis. We couldn't be happier for this technology. This pump is the best choice for our family. Stacey Simms 6:34 And finally, the people who are using the Omnipod dash system. Lynette 6:39 Hi my name is Lynette and I live in the Atlanta area. My son was diagnosed with type one two years ago yesterday and we have been on a pump since October of last year. We started on Omnipod the biggest reason he chose Omnipod was because he did not want a tail as he said, or tubing. We went with the tubeless pump we love that it's waterproof we love that he can shower in it believe that he we can do smaller amounts than you can with pens because he tends to need smaller amounts than half units. We love just everything about it. To be really honest, our only major complaint is that it tends to come off on pool days and we've tried lots of different options for keeping it stuck and so far we haven't found something that works. But other than that we're super happy with our Omnipod dash system. Sondra 7:30 Thanks. Hi, this is Sondra and I live in Tacoma, Washington. I was diagnosed with type one in 2006 when I was 57 years old. I did MDI for a year got the Dexcom in 2007 and still struggled with random overnight low lows in 2008. I started using the Insulet Omnipod. I chose tubeless as I had struggled with sleep since menopause, being able to have a very low basal rate overnight has helped me so much with my nighttime lows dialing in basal rate It says made managing my type one much simpler. I love being able to do watersports and not worry about being unplugged from basal insulin. I'm looking forward to the Omnipod five which will create a closed loop with my Dexcom six. I'm hoping the FDA approval for the Omnipod five and Tidepool Loop come soon. Announcer 8:23 Your listening to Diabetes Connections with Stacey Simms. Stacey Simms 8:29 Thank you so much for sending those in. Isn't it interesting that it's pretty easy to find people who love whatever system that they're using? I didn't have to hunt high and low I put an ask in the Facebook group and found a whole bunch of people. In fact, I had to cut off the comments. We had so many people who wanted to say how much they loved the system that they use! Of course, there are personal factors and preferences that come into play. So just like we said in the previous episode, you got to see these systems you got to hold them in your hand. And I do think you need to know also as you listen and you we've assumed this but just in case, all six of those folks are using a system, not just a pump, so they're using a continuous glucose monitor. In the case of Tandems tslim, they're using the Dexcom. Same thing with Insulet Omnipod, they're using the Dexcom. With the Medtronic 670G, they're using the Guardian sensor three, which is a Medtronic sensor. It's actually the only one with the same company. The other two are separate companies with working agreements. You can use an insulin pump without a CGM. We did it for almost seven years. Between the ages of two and nine. My son Benny did not use a continuous glucose monitor but he did get an insulin pump six months into it, at age two and a half. He just used a pump and certainly you can use it that way as well. We now use, as you likely know, if you listen, we use the Tandem system we have the X2 with the Control IQ software. We've had that since January. Benny wears a Dexcom CGM and we love it. I think it's a fabulous system. There are aspects about it that he really enjoys and prefers that you know, friends of his don't feel the same way about. I’ll lay it out here, I've said it before. What he likes about the tslim is that he doesn't have to have an external controller. There's no PDM for it as there is with the Omnipod. He likes that it's flatter on the body. And he absolutely loves the Control IQ software, which has not only lowered his A1C significantly, it's done it with less work from him and less nagging from me, although he still argues that I may like him too much. I mean, come on, man. But he's 15. I guess that's his job. I will say though, in all fairness and knowing what I know about the diabetes community and the technology that's out there, a lot of people feel very differently, right? There are a lot of people who prefer the flexibility of sticking an Omnipod anywhere they want on their body. They don't care about schlepping a PDM. They like that. It's waterproof. They like that they can remote bolus their kid. That's a big deal. We talked about that last week. And for Medtronic, people, there's a lot of people who like that it's all in one (note: I mean that it’s all one company. There is no “all in one” CGM/Pump device). They like that. They don't have to go to different companies, and they like that their doctor may be more familiar with it. Is there a downside to every system? Sure, I went through a couple of pros and cons there. But it does come down to personal preference, I am going to link up a lot more information about these systems and what's coming. Unless something really bonkers happens. And you know, the delays from COVID, or something really goes wrong. They're all on track to be controlled by phone, if not by the middle of next year, then in the next couple of years. And once that happens, and you get true remote bolusing for all of these systems, then it's really going to be personal preference. I mean, once that happens, it's going to be absolutely amazing. But you cannot buy today on promises of tomorrow. You know that it is of course worth noting that podcast listeners are more educated and have more money than the population overall, not just in diabetes, not just for this show. That's really just podcasting. So it's not really a big surprise to me that we easily found six people using the latest and greatest. Of course, there is so much to talk about in the diabetes community when it comes to access and affordability and insurance and affording the insulin that needs to go into these pumps. So I don't gloss over that. We've talked about that many, many times before and will continue to do so. But this particular episode, I hope is helpful in seeing what people think about the technology that is out there right now. There really is no one answer. I'm going to tell you one quick story before I let you go here. And I'm sorry, I apologize in advance to all of my rep friends, the reps for all of these companies are just like everybody else. There's wonderful ones, and there's people in it for the money. And you have to be careful about claims. And I'm not singling anybody out. I'm not singling any company out. This happens here, there and everywhere. But I was at a conference years ago, and I went over to one of the booths just to check out and see when I go to all the booths see what's going on. And the rep for this pump company said to me, if you switch to our pump, I guarantee your son's A1C will come down half a point I asked him about that. And he gave me some cockamamie answer. If I tell you more about it, you'll know the pump company. So I don't want to go into it. But I mean, it was really a stretch. But if I had been a newer diagnosed family, I think I would have been very much influenced by that. I asked him if he had any literature and studies to back up his claims, and he did not. But he said he would email me something, I gave him all of my information. Of course, I never heard from him again, the idea that switching technology can lower your a one c by a certain point, and that's why you should switch. That's a tough one. I just said that control IQ dropped my son's A1C significantly, right. But you know what? It's the whole story of him. It's not just that pump system. If we were new to pumping, if we didn't have the settings right, if he didn't know how to, you know, do certain things if he was going through a phase or something where he didn't want to do anything. If he wasn't having success with the CGM if he was getting a rash if it wasn't working For him, if it was falling off, if the pump wasn't comfortable, if it wasn't the pump he chose, and he didn't want to use it, there's a lot of things that can happen there. Pumps are not a panacea. And anybody who tells you that they are.. I want to be careful what I say here. But let's just say they may not have your best interest at heart. So my good guy reps, and there are so many of them. And we have one who is amazing, and I love and is one of our heroes in the diabetes community. I'm sorry for that. But I think it's really important that people understand it's just like the endocrinologist who says, I'm only going to learn this system. So you can't have a separate pump, because I don't want to learn another system. Right, man, we got to fight for so much in this community. I hope this helped. If you have any more reviews or questions about pumps jump into Diabetes Connections, the group will have an ongoing discussion there. And I kind of hope this helps you think a little bit more critically when you see these discussions in other Facebook groups, but let me know what you think. And I will link up in this episode a whole bunch of guides from different And organizations who've done really good work comparing the technology that's out there pro and con, and please go back and listen to the previous episode about how to choose a pump if you haven't already. thank you as always to my editor John Bukenas from audio editing solutions and thank you for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Benny 15:24 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
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"Can I Just Get the Pink One?" - How To Choose An Insulin Pump
07/21/2020
"Can I Just Get the Pink One?" - How To Choose An Insulin Pump
“What insulin pump should we get?” is a really common question. But it isn’t the right question, at least to start. We're turning that around into, “If I want a pump, how should I choose one?” After all, every pump out there has devoted fans, which tells you there isn't a bad or wrong choice. Stacey is joined by long-time diabetes advocate Melissa Lee and together they lay out what adults and parents of kids with type 1 need to think about. This show discusses insulin pumps available in the US, but the ideas and conversation can be applied to any make and model pump on the market. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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 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. What insulin pump should I get? You know what? That's not really the right question. You have to start with, if I want a pump, how should I choose one? After all, every pump out there has devoted fans Melissa Lee 0:32 And what that means is that there's not a bad option. There are certainly options that might have a specific feature or style or might fit in with your lifestyle better, but there's not a bad option. Stacey Simms 0:44 That's longtime diabetes advocate Melissa Lee, she's talked about this issue for years. And together we lay out what adults with type one and parents of kids with type one need to think about. 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 Diabetes Connections. I'm so glad to have you along. I am your host, Stacey Simms. And if you are new to the show, because you heard about us or saw me at Friends for Life, the virtual conference that happened last week, I am thrilled to have you here. What a great conference that was, oh, my goodness, I hope you had a chance to participate. They had so many more people because instead of being you know, in person in July in Orlando, unfortunately, they had to go online like everything else this summer. But the plus side of that was that so many more people could participate and learn about Friends for Life and learn about this community that we've been so fortunate to be a part of for many years. Now. This isn't an episode about that. I won't talk too much about it. I hope you've followed along on social media. And please reach out if you'd like to learn more. I'm really looking forward of course, to getting back to in person appearances, but I think Friends for Life has really set the gold standard on how to do these events virtually. It was really well done. I've wanted to do an episode about choosing an insulin pump for a while I did one way back when, and I can link it up in the comments, but you have to know if you go back to it that it's pretty dated, but it was going through all of the options at that time. And I've realized since then, that it's really not about which pump, right, it's about choosing the pump. But I know that you want to know more about the different kinds of pumps and which one people think is best. So I'm putting out a separate episode in just a few days with what I'm calling true believers, people who love the insulin pumps that they're using right now. And that episode will have a little bit more editorial to it. This week, though, I want to talk about process, you know, beyond tubes or no tubes. There is so much more to it than that. If you even want to switch to a pump at all, which you know, you don't have to do I hope this episode clears some things up and gives you tools that you can use going forward as you make these decisions. Diabetes Connections is Brought to you by One Drop and getting diabetes supplies, you know, pumps, supplies, meter supplies, whatever you're looking at. It's a pain not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plants. Plus you get a Bluetooth 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 prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one they just get One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to Diabetes dash connections dot com and click on the One Drop logo. My guest this week is always terrific to talk to in fact I just had her on the show a few weeks ago. Melissa Lee is a longtime blogger and patient advocate dogs goes with type 1 diabetes at age 10. She is known for her extensive knowledge of diabetes technology and her role as a leader in the diabetes online community. She was the former tech editor of a sweet life. And that's where I first saw our technology reviews. She also did it on her personal blog, sweetly voiced and she'll talk about that she led diabetes hands foundation as its executive director before serving as Big Foot biomedical’s Director of Community Relations. And right now she's leading clinical training content development at tide pool. So Melissa has worn a lot of hats and she is very careful as she speaks to let us know which hat she is wearing. But I saw Melissa do a technology presentation years ago and I thought Yes, we've got to have her on the show for this. Before we jump in. I gotta let you know. We do talk about insurance and your medical provider and stuff that may seem boring in the beginning here, but it really is important. I mean, who's gonna pay for this right? What's your provider going to talk to you about? These are things we have to really get into if you are here for tubes or no tubes skip ahead to about 20 minutes in when we do talk about, you know, active kids and active adults and tubes and pumps and the nitty-gritty of what you have to carry with you. But really don't skip those first 20 minutes. I really do think these are topics that maybe aren't talked about in those Facebook groups when we're talking about pumps, but they are so important. All right, here we go. Melissa, thank you for jumping on. I'm really looking forward to this conversation. I feel like I learned something every time I talk to you. Thanks for being here. Melissa Lee 5:31 And I will thank you so much for the invitation and for touching on this topic that so many people have questions about. Stacey Simms 5:37 One of the reasons I wanted to talk to you, in addition to knowing you've done this presentation is to know that you have used a lot of different pumps, like a dozen different kinds of pumps. Is that mostly to get the experience from how do you do that? Melissa Lee 5:50 Oh, well, that's it's a very good story. So I got my first pump. I was 20 years old, it was the year 2000. And there were only one or two options on the market now. I went with the one that my doctor said, well, all my patients are on this one. And it was a Medtronic, I followed a very traditional pathway, I think that many of your listeners probably follow, which is I got a pump from a company, when they released a new version or a new software upgrade, I upgraded. And I went through that process three or four times. And I stayed on Medtronic pumps for nearly eight years. And they served me very well. But what I also didn't do during that time was, you know, I was in my 20s. First of all, I wasn't watching the market to see what else was developing. And I would start to hear in my late 20s Oh, you know, there's some other options. I was married to Well, you've had us both on the show, married to a technology guy who is an early adopter of many technologies and, and I really have to, I mean, in so many ways, I credit Kevin with a lot of things, but my husband Kevin said if you want to try something else, like your warranties up if you want to try something else, and you don't like it, that's okay, like let's see what else is out there. There, and suddenly I had this. First of all, I had a husband, who had more income than I've had as a single teacher, but he, you know, we had good insurance and I could say, Okay, my warranties, I'm just going to see what else there is. Now the sidebar of that conversation is that through that I found Amy Tenderich’s really amazing piece about this is this open letter to Steve Jobs that she was written about the state of technology and that launched my entire entree into the online world of diabetes, which is a whole other story, right? You know, going and finding out Okay, so what else is out there? And so I looked at some pumps that were available at the time this would have been on 2008 I looked at the Cosmo and the Animas ping was just coming to market and so I looked at these options and I started to bravely try something new and with every time you try something new, there's this anxiety about like, Oh, God, am I gonna like this thing? You know, I've had eight years As Medtronic paradigm pump in my, under my belt, and that was what I knew was something else going to be good. [And from there, I like once you make the jump once you get a little bit more bold in like, Well, okay, I didn't die. I liked. I like things about this experience that I like things about my first experience. So again, what else is out there? And then I began to, to write up reviews of these things for other users to read, like many of us do now that I was one of the first bloggers to be writing about some of these products like I was on my blog that is now sort of frozen in time, but like so many bloggers, I would write it about, this is what I liked about it. This is what my expectations were, this is what I didn't like about it. I would reach out to the sales reps into the company is to be like, Well, I have a question about this. And so then as I began to review, more of these pumps, fast forward, maybe four or five years, then pump companies were reaching out to me to be like Like, Hey, will you try our thing and tell us what you think of it? Would you like to do a two week trial of it? Would you like to wear it for 30 days? And, you know, I was never in a position like some folks, I was never a paid spokesperson for a pump. I was not someone who was given free pump supplies for using the product or anything. But I did get experiences with these devices. And yeah, I've worn something like a dozen pumps from six companies over the years. Stacey Simms 9:26 My story, which is really Benny's story about picking his pump way back when it's similar to yours in that I went to our care team and said, I have a two-year-old, we'd like an insulin pump. How do we choose? You know, what do we even do and at this point in 2007, as we knew there were a few more choices back then, which is kind of sad to think about, but I let our educator kind of guide us in terms of and I said I really did say this give me the idiot-proof one that works the best, right? I just need the one that a dummy can use and clip onto a two-year-old and that will also work well for him. We went and looked and held and touched everything and decided on the Animus 2020, which then became the Animus Ping. And we went from there. But we really leaned on our educator. And I'm glad in a way that I didn't have the amount of, I guess we'll call it anecdotal support that there is right now. Because if bring this question to a Facebook group. Let's face it, you're gonna get a lot of bands for certain brands. So if the question then becomes not which pump do I use? Because we all have our personal biases, but how do I choose? You already mentioned you had a change of insurance? You had a better situation than you'd had before? Let's start there. Let's talk about insurance. Because not every insurer covers everything. Melissa Lee 10:44 Yeah, absolutely. And it's such an important point. And it's one that we as patients and particularly if you're in patient advocacy, like I have been, it can make you angry, but at the same time, you said something important. Every pump has its fan base, as well as its detractors. And I would say by enlarge, the fan base is huge compared to the number of detractors for every single pump product on the market. And what that means is that there's not a bad option. There are certainly options that might have, you know, a specific feature or style or bike fit in with your lifestyle better, but there's not a bad option. And I firmly believe that what that helps with is the if your insurance does not cover your first choice, it's important to note that the price differential between paying out of pocket for these really high touch high tech and expensive technologies, it is probably worth it for most people to consider that if my insurance will support my use of my second or third choice. I will be in a better position to be successful on this than if I have to pay out of pocket. For my first choice, and if you have the wherewithal financially to support your use of your first choice, and it's not on insurance then by all means, get your prescription for it and proceed. But I think that the majority of people fall into, I'm going to need support from an insurance payer to pay to support my use of this product. And that is not just the product, but also the supplies going forward. You know, if you have a situation where you have your first choice pump is maybe only available through your medical benefit through the durable medical equipment benefit, and you have a terrible plan that has only you know, 50% or less coverage of your durable medical equipment, then you might consider the choice that you could get through your pharmacy benefit because maybe for you on your insurance plan, your pharmacy benefit will cover 100% or 90%. And so, as much as we as particularly in the US value this I want to be able to choose my therapy, there's a reality of the cost I think it's really important to be able to say my insurance covers this pump, and this pump. And so I'm going to choose my best option from those. Stacey Simms 13:09 And I would jump in and say 100% agree with that, that is worth a phone call for you. I know it's a pain. I mean, we all hate dealing with the insurance companies, but it really is worth calling and double checking this yourself. We love our reps. We love our healthcare teams, but I had boy Benny’s been on an insulin pump for 13 years and there was one time when everybody assured me it was okay. And it was not and if I had called myself and gone through those hoops which think I would have realized so it's worth calling that to double check as much of a pain that it is Melissa Lee 13:42 well you know, and you bring up an important point because you say call myself call who you know many of us start with calling our insurance company and then we find out that they don't even do the representative you may be talking to from your insurance company covers deals with a lot of therapies and benefits and you say insulin pump and they may be actually looking at the wrong thing, or they may have the wrong information. If you have identified I want a product from company A call Company A, because Company A actually has every single company Dexcom, Medtronic, Tandem, Insulet. They all have people that are dedicated to what's called verification of benefits. And as soon as you give some information to these companies in terms of, here's who I am, you don't even necessarily need the prescription before they verify this, you can be doing that in parallel, because of course, you will need a prescription for whatever you choose. But they can be looking at your insurance plan. And they have experts on the inside who are able to look this up and say, Oh, well, actually, you could get it but we're going to have to order it from this other company that's closer to you because you have a thing that says you have to order within 50 miles of your zip code or Oh, we can get it but we can actually get it through the pharmacy channel. And so they can actually they have experts who do this and they have a vested interest in getting you on their product. So they're going to work really hard to find that out Stacey Simms 15:00 I think back to my experience, right starting that insulin pump with Benny and I needed my care team so much. I know everybody has peer groups now and online support. But I needed a device that my care team knew how to operate. And while sometimes that limits you, I do think it's really important. I guess we can talk about the flip side of that. But let's start by talking about that question of what does my healthcare team have experience with why that important to you? Melissa Lee 15:27 Well, and I do want to talk about the flip side of that as well, because I've challenged it several times. But on the one hand, your clinicians office is probably already set up with a representative for that, for that product they use, they probably already have the software installed for that product they use, they probably already understand how to both read and analyze the data that comes off of those devices, how to change the settings, how to troubleshoot with you, as well as how to also seek their own reimbursement for it because the time that They spend evaluating the data is actually part of their fee schedule. So I do think it can be a benefit to you both in getting you on the device faster getting you on boarded to the device more smoothly, because they already have a process in place, and they have a comfort level of supporting you with it. The flip side is, I remember when I was living in North Texas and I had this amazing endocrinologist who would just let me run out and try whatever I wanted, and she'd absorb the cost of like, whatever new software she was going to have to install, she would let me be a guinea pig. What that also meant is that if I had a bad experience on something that soured her for the rest of, you know, her patient base. If I had a good experience, without overprescribed, I felt a lot of responsibility there. But at the same time, she said she would go to conferences, and she'd be sitting at a table with nine other clinicians, and nine of them had only heard of one insulin pump brand. And so by that same token, you if you're out here As a patient or a caregiver, and you're doing your own research on what your options are, you may have done the right research to find the right thing for you, and your insurance will cover it. And you know, you want it and you bring it to your caretaker or to your clinician, who says, Ah, you know, sorry, I'm an all XYZ shop. And you actually may need to advocate for Will you let me try it? What are your concerns about it? And, you know, we see that especially, and Stacy, you've done so many podcasts about the DIY movement and do it yourself. You know, there are certainly clinicians who haven't heard of those options. And you may actually find yourself having to make a case for why you can be trusted to try this thing that they don't have experience with. And there also may be the case where they say, Listen, I can't absorb the liability of that or I can't buy the new software that would go with that. I remember, I was the first person in my clinicians office to try the insulin pump from isanti back when they were are around and my doctor's office had to buy a whole new piece of hardware to get the data off of my...
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Life After a Pancreas Transplant: Meet Brandon Mouw
07/14/2020
Life After a Pancreas Transplant: Meet Brandon Mouw
What's it like to live with a pancreas transplant? And why would you need one? was diagnosed with type 1 as a child and lived well with it for many years. He explains what happened to change that, what led to the transplant and how he's doing now, a year and half later. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Transcription coming soon!
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"Blood Sugar Boss" Ben Tzeel / "Actually, I Can!" Author Morgan Panzirer
07/07/2020
"Blood Sugar Boss" Ben Tzeel / "Actually, I Can!" Author Morgan Panzirer
Meet two people with diabetes making a difference in very different ways. We're talking to dietitian and strength coach Ben Tzeell & teen author Morgan Panzirer. First, if you've sort of fallen off the nutrition and exercise wagon in the last few months, you’re not alone. But getting back in the game doesn’t mean going to extremes. Ben has advice about starting small and making changes that stick. Morgan was diagnosed with T1D at age 6. She's now 19 and just wrote a book about her life – so far – with diabetes. It's called Actually I Can. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. This week, I talked to two people with type one making a difference in very different ways. First, if you've sort of fallen off the nutrition exercise wagon in the last few months, you're not alone. But getting back in the game doesn't mean going to extremes. Ben Tzeel 0:37 Life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy, and now you're feeling deprived when you see all your friends eating these other things. Stacey Simms 0:47 That's dietician and strength coach Ben Tzeel. He's got more advice about starting small and making changes that stick in Tell me something good. I'm talking to Morgan Panzirer diagnosed at age six. She's now 19 and just wrote a book about her life so far with diabetes. Morgan Panzirer 1:05 And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine as long as I don't need a shot. Stacey Simms 1:15 The book is called, actually I can, and after talking to Morgan, I can tell you better believe she can. 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 Diabetes Connections. I am so glad to have you along. Welcome if you're brand new, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned two. He is now 15 and a half. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting. And that is how you get the podcast. I have been so busy the last week mostly because for whatever reason, sometimes podcast interviews seem to come in clumps. So I had a lot of interviews to do and a lot of production I take care of a lot of it before I send it over to my editor who I've mentioned before, but also I've been busy with my Friends for Life presentation, Friends for Life is the biggest family conference all about diabetes in the US, possibly the world. And instead of having an in person conference this year, like everybody else, they're having a virtual conference. And so I decided, and boy, I thought this was a good idea that I would do my usual game show I usually do a game show presentation as one of my talks for them. But I would do Hollywood Squares because boy zoom just lends itself to Hollywood Squares, doesn't it? That's what I at least what I think of and I gotta tell you, I'm thrilled with how it came out. But I also got to tell you, I'm not sure I'll ever do it again. We had to get eight people I was the ninth you need like a tic tac toe board right for for the Hollywood Squares. The FFL-Wood squares excuse me, that's Friends for Life, FFL. So FFL-Wood squares and I decided to go big and I got people from all over the world, different time zones. Day here night here. Early morning here, it was amazing. So huge credit to my cast of characters. Thank you to the contestants. I cannot wait to share it with you. The conference itself is mid month. If you've signed up for that you'll see it then. And then we'll drop it as a video in a podcast episode. Shortly after that. That's one of the really fun things that I get to do, right. I mean, you have an idea you get to try it. You see if it's a disaster, you see if it's fun, but you know, it's it's never boring, that's for sure. Okay, interviews coming up in just a moment with Ben Tzeel and Morgan Panzirer, but first Diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops 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 in 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. Unusual show this week and that I have two guests two separate interviews. And if you're here only for one or the other, that is fine. I can tell you that Morgan's interview starts about 22 minutes from now, so you won't hurt my feelings if you skip ahead. But I really think you'll like my first guest, Ben Tzeel. we first talked to him last year. He's a dietician, he's a strength coach. And Ben says eating and living with diabetes should not be boring or feel like punishment. We had a fun conversation about what that really means good intentions about eating well, and exercising and quarantine and more. Here's my talk with Ben Tzeel. Hey, Ben, it's good to talk to you again. Thanks for coming on. Ben Tzeel 4:53 I'm just so thankful to be here. And it's so awesome. It's just amazing. Thank you. Stacey Simms 4:58 You're really well. We'll see about But Ben Tzeel 5:02 it's human. It's human interaction right now we don't have much of that these days do it. Stacey Simms 5:06 Well, let's start talking about that. I mean, how have you been living since the stay at home orders? What's your life been like? Ben Tzeel 5:13 I just don't go anywhere. I've been living in Florida, not nothing against Florida, but I feel like the cases go down and then the cases go up. And that's just what you hear about everywhere. And I just figure it's just not something I'd rather really want to deal with if that makes any sense. Do you live alone? I actually live with my girlfriend and fortunately for me, she's willing to do a lot of the grocery shopping and a lot of the day to day stuff at the pharmacy but honestly, we just don't go anywhere because she works in the ICU as a pharmacist and she sees all this stuff firsthand. Wow. Stacey Simms 5:44 That's gonna be interesting job to have right now. Unknown Speaker 5:47 Oh, yes. Stacey Simms 5:49 Assuming that you've been doing this since mid March, yo, how's your health? How are you keeping up because you're pretty intense person when it comes to fitness? Ben Tzeel 5:58 Yeah, I definitely like to thanks. So it's something where I've had to get creative. I've had to step outside of my comfort zone and really look at what I have and say, Okay, what can I do with what I currently have? And slowly, you can assemble a little mini gym at home and things like that. But I've really, really taken time and effort to focus on what can I do instead of, well, this is out of my control, I guess my fitness is gonna go away. I guess all of my other habits that I've worked so hard to develop are gonna just fall by the wayside? Stacey Simms 6:26 Well, I think for some of us, those things, the second part, those things have happened, right? Because it is hard to maintain a routine It is hard to, you know, especially when, and I'm gonna get personal here for people like me, you know, you're a strength and conditioning coach, you know, this is what you do. I'm a suburban mom who walks her dog and goes to the gym a couple of days a week. And it's been really easy for me to fall out of those good habits over the last couple of months. You know, do you have any advice? If people are listening and thinking, Well, I haven't kept up so it's too late now. Ben Tzeel 6:56 Well, it's first one of those things is to your point where you mentioned It's too late. Now, it's never too late to actually start and say, I'm gonna look back and say, This is what I did before, this is what I was doing. And maybe I won't be at that same point right now, because I have let myself fall off because I have fallen out of this routine. But what is something I can do today that small to just build a little bit of momentum. And as you build that you take another baby step, another baby step, and suddenly, you're taking strides to get back to where you were. So if you start from that mindset, and that point, just make that tiny little shift, you end up in a situation where suddenly three, four weeks from now, you're thinking, wow, I'm already almost back to where I was. Because your muscle does have a memory, it is going to remember where you were. And as long as you put in those same habits you previously had, you should be totally fine. Stacey Simms 7:45 It's funny when you talk about, you know, getting back into routine because I think at the beginning of this, I don't know if this happened to you, me and my daughter, and I think a lot of people and my daughter came home from college, and we said All right, we're going to do yoga on YouTube. We're going to walk the dog like five miles every day, and we're gonna get really, you know, in great shape, we have a stationary bike, and we're going to do all these bikes and all these rides and, and we really haven't done much of it at all after those first couple of weeks, and I've seen some really funny parody videos on that and a lot of people who have felt this way, but I want to flip that around and say you have taken as you said, You've gotten creative in your house, can you tell us a little bit of some of the things you've done to make your your home gym, I'm assuming that you didn't run out and buy a whole bunch of, you know, gym radio equipment? Ben Tzeel 8:29 No, I was fortunate that I my parents don't live too far away. And I had a bunch of dumbbells and a bunch of things from my youth that I was able to pick up. But beyond that, I mean, I was pretty much in the same situation that everybody else was where I had a few resistance bands and a few dumbbells and a few little things and had to start realizing. All right, well, I want to keep my insulin sensitivity good. I want to stay on this track of that I've been working so hard to be on what can I do. And so maybe that requires you sitting down and saying Alright, I'm going to restructure my workouts, I'm going to tell myself maybe I was doing four days a week before an upper body and lower body, you can still do that. But you may have to adapt. Instead of using a cable, you may have to use a band instead of using like a barbell or instead of using a heavier weight, you might have to go more reps at a lighter weight, or incorporate pauses or incorporate other bodyweight movements that can be just as challenging. And honestly, the first few weeks of the quarantine, stay at home, whatever you want to call it. I actually felt like I was more sore than when I was in the gym because I had to push harder. Stacey Simms 9:34 You've mentioned your blood sugar several times you've lived with type one you were diagnosed when you were a kid. I've heard two schools of thought here over the last couple of months. One is you know, my blood sugar's are all over the place. I'm stressed out I'm so worried and you know, things are crazy. And then the other side of the coin is my blood sugar's have never been steadier. You know, I'm not going anywhere. I'm not eating restaurant food, where do you fall in on that? Ben Tzeel 9:56 I would probably fall. That's it. I mean, I'll Honestly, it's a good question because I see it a lot from the first perspective. So I feel like I then kind of translate that to me. But it's actually my numbers have been in better control since this all began. Because there haven't been as many extraneous factors. I'm not going places. There's lots of unknown variables introduced. But I just I feel for a lot of the people that are in the first situation because there is that lack of routine and that lack of structure. And while everybody says, Oh, I, I wish I could be home more, I wish I didn't go to my job. Taking that structure out of the picture can really make it difficult to stick to that exercise program really stick to the food and the nutrition that's been making you feel good with good blood sugars, and you ultimately fall off that path. And when you do your blood sugar's kind of take over everything else. And during a time where there are no sports, there's not lots of distractions, there's no big gatherings, there's no concerts, your blood sugar's can literally become the one thing that you hone in on and focus on way too hard. Stacey Simms 10:55 That's funny because I thought you were gonna say there at the end that you can really you can focus on And really make a great difference. But you said you focus on and you know, it can it can not be a great thing. Can you expand on that last thought? Ben Tzeel 11:08 Sure. And I mean, of course, I can tell you it, there's ways to get around it. But a lot of people what will happen is, I mean, think about it like because there aren't tons of social things to be doing. And there's not tons of activities and tons of distractions, you start to look at the few distractions you have in your life. And one of them would be, I wouldn't call diabetes, a distraction, but it's one of the big prominent parts of your life if you have it. And it just starts to become a bigger and bigger and bigger thing that you just the more you focus on it, the more it expands and the bigger role it can take in your life. So I've watched a lot of people people I've worked with people I've interacted with on social media, that they end up in a situation where their blood sugar's just take over their entire existence where they're looking at their decks calm every five minutes, wondering what's going to happen and sometimes that leads to great results, but other times, it just drives people crazy. He drives up their stress level and they get into this loop of frustration. Oh, my blood sugar's high. Oh, I'm a failure and they go down the spiral that is very counterproductive in terms of living like a really as free of a life as possible to do right now. Stacey Simms 12:14 Yeah, I would also echo that for parents as you were listening. I think it's super easy. And I found myself doing this too, with Benny home a lot more. It's easy to focus on our kids blood sugar's more, right? They're not going anywhere. They're not go to the movies, they're not hanging out with friends. And it's easier to make that a bigger focus than it needs to be. So I'm kind of listening to this and taking it to heart. But you know, one of the things you're really known for in social media is these these crazy foods, right? We talked about this last time when you were on, you know, giant donut, big meals and stuff. And I'm curious if there's, you know, we often figure especially newly diagnosed, we often find out that we love restaurant food because it's full of hidden fats and sugars and you know, salt and butter and all those delicious things that We love and that's what makes restaurant food so good. But it's kind of hard to bolus for that stuff. Are you finding it easier? I mean anything on that in terms of home cooking, which I'm so sick of Ben, I am so tired of cooking. And my husband helps if he cooks too, so I'm just sick of it. Ben Tzeel 13:13 Well, I can't blame you for being sick of home cooking because it gets to a point where I'm probably three months or so from having had something from the outside. And it's I'm just craving something Stacey Simms 13:26 brought in a meal. You haven't brought anything in. Ben Tzeel 13:28 I just maybe I'm paranoid, but I just I just would rather be like, you know what, at least I know, I'm dealing with the prep and I'm dealing with everything else. And when this starts to settle down, then I'll start to venture out and have all of the fun food again. Not that I haven't had fun. Trust me. You can make many fun things at your house. I know what you're making. Stacey Simms 13:45 Yeah, no, I have friends who haven't brought any food in. I mean, we're not in that camp, obviously. But I know a few people who've done that Ben Tzeel 13:51 Emilio wants me to really bad so we're working on it. We're in a negotiation right now. But to your point, I would say when you know All of the factors within what you're eating. So of course, you know that you've prepped it, you know, what you've put into it, you know, everything and everything. And there's no variables, there's no question marks. And we're not talking about the COVID part, but just about the actual composition of the food itself, then it's a lot easier to bolus for because you have all the answers. You have all the math right there when someone else creates something, even if it's something that, you know, Oh, I know, this is a bacon double cheeseburger, and I know I've had them before. And this is what happens. There's some sort of variability because that part of it is out of your control. And that lack of control can be difficult to account for granted. There's ways to take it in to consideration and be able to say, all right, this is what I'm going to do based on experience based on other knowledge, like put numbers and experience together and make a very educated decision and dose and do amazing with it. But just that little factor of there's other stuff in here there is that hidden fat you were describing. There's sometimes things are cooked in, in oils we don't know about there's sugar that might got thrown in there that you don't know. And then you end up eating some foods like that and you get frustrated you you have chicken alfredo and your blood sugar goes up to 320 for the next seven hours, no matter what you do no matter what you dose and you're just full of frustration the whole time. Stacey Simms 15:14 So you work with a lot of people with type one and your background is nutrition. You have a master's degree, you're registered dietitian. I'm curious what the first change you urge people to make when they come to I know not everybody's the same. But you know, one of the questions maybe that you ask, Ben Tzeel 15:30 I guess, coming from me, the first things I want to know is where people are starting out right now. Like, what are you eating? and kind of just getting you aware of what are you eating because as evidenced during this time, and this time, please put a magnifying glass on it more than anything else. But people kind of just go through the motions. They don't pay as much attention to, oh, I'm eating X, Y and Z. They just say oh, I'm gonna make whatever I can grab and I'm just gonna go for it and eat and then continue and a lot of people can't tell you...
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"I Can't Imagine Any Place More Special" - Diabetes Camp Goes Virtual
06/30/2020
"I Can't Imagine Any Place More Special" - Diabetes Camp Goes Virtual
Diabetes camp is looking very different this summer as almost every program has shifted to a virtual experience. We talk to the people behind one of the oldest and well-established D-Camps in the country. Sam Stevens was diagnosed at age 5 and went to Clara Barton that very summer. She says she basically grew up there, becoming a counselor and now a volunteer helping coordinate their very first virtual experience. In Tell Me Something Good, an Emmy and an incredible story of perseverance and survival around COVID 19. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Use promo code "SIMMS" to save 20% ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:17 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:23 This week diabetes camp all right this year is really different. I'm not here to spin it like it's not. But many camps across the country are getting creative, including the people at Clara Barton, who are hosting a virtual experience Sam Stevens 0:34 that there are kids who look like me sound like me act like me have my shared experiences. Even if we don't get to meet in person. I still know that they exist. I still connect with them. I still make friends. Stacey Simms 0:50 That's Sam Stevens of volunteer and counselor at Clara Barton. She was diagnosed at age five and basically grew up going in Tell me something good TV me and an incredible story of perseverance and survival around COVID-19. 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 will be so glad to have you won. I'm your host, Stacey Simms. And if you are a longtime listener, you know that I'm a huge fan of camp, diabetes camp for sure. But regular summer camp, you know, any kind of programs that give kids more independence and give parents some time to themselves, which none of us are really having any experience with this, because we're all at home together. But I do love camp and I was so excited to have an opportunity to talk about what diabetes camps are doing in these really difficult times. Both of my children started going to sleepaway camp when they were seven, eight years old Benny started at age seven for a week long diabetes camp, and they were both set at age eight to go To what I call regular camp, a non-diabetes month long program, and I've talked about that in the past a little bit more and in depth about how we did that. But I actually want to talk about my daughter for a second who doesn't live with type one, because the year she was supposed to go for the first time to regular camp, and the youngest you can be for this camp is eight years old and going into third grade, I want to say, but you have to be eight. And it's an option at that age to do a two-week program, which she was all signed up for. But this was in 2009. And if you recall, we had another big flu scare that year, that was H1N1, that was the swine flu. I'm amazed that more people aren't talking about this now. Or maybe we did and we've just moved on because been talking about COVID for so long, but they closed down a lot of programs for H1N1back in 2009. And in our area, certainly here in North Carolina. It was a big fear. Now it passed very quickly. It was nothing like what we're experiencing now. But her camp was canceled, and it was devastating. I mean, she hadn't even been to camp. So she didn't even know what she was missing. But you know, we had signed her up. We had talked about it, you know, what was that experience and both of my kids are super independent. So she knew she was going to really enjoy camp. So as they called it, Swine 09 happened, she still has the T shirt from this camp, they sent everybody who missed camp that year, a T shirt with 09 on the back, my goodness. But it's wild for me to think that she missed her very first year of camp because of it. And Benny is missing his very last year as a camper at this camp. At this age. He's 15. He's going to be a sophomore in high school. That's your last year as a camper, then you can continue on with a special program next summer. And then after that, a counselor and training etc. But she says he's going to do which I think is great. I know there's been a lot of disappointment and events canceled. And this is just one of many, many, many things, but especially with diabetes, right camp is such a big influence on so many people. And I'm thrilled that so many camps are going to try to do it virtually, of course, it's not the same when you're talking about connection. I think it's wonderful. So we'll talk about that in a minute. I have to tell you about something that has been sitting on my desk. Actually, it's a wrapper that's been sitting on my desk to remind me to tell you about this because we hated it a long time ago. But I've been meaning to tell you and this is gonna sound like a commercial and I guess it sort of is, but they're not paying me. But I wanted to tell you about NRG foods, it's the letters N R G. And I'll put a link in the shownotes Chris Ruden, who has been on the show before, tremendous athlete, world record holder. He has a prosthetic arm, you know, I'm talking about and if you don't, I will also link up our past shows with Chris Ruden. He was on the Titan games last year. really remarkable guy. He sent me a bunch of samples of the NRG bytes. Really, they were for Benny, I think he sent us six of different flavors, and Benny only got two because my husband and I got to them first. They're really good. They're a smaller portion size than usual. And of course, that's how they're designed. They didn't want them to be too caloric. They're a size that's designed for, you know, a post workout replenishment. I guess we'll do a post podcast recording replenishment because I didn't work out when I eat them. But I thought they were really good. We've tried a lot of high protein bars in the last couple of years, as Benny has really been experimenting with different things that he likes. He is trying to be much more conscious, not just of carbs. He doesn't eat low carb, but of calories because he has lost some weight and he's doing really well. So the energy bytes, he said, were really good. And his review was, he does think they're too small. This is a 15 year old, but he likes that it has the protein. And he also says he understands he thinks why it's small, because you don't get that protein aftertaste. He says a lot of high protein bars that we've tried just are full of protein and you get this weird, he didn't describe it as chalky, but I would like a weird protein taste. So these are really good. They come in three flavors, peanut butter, cran-almond and chia chocolate and I'm not a big fan of chia. So I was very skeptical, but I didn't taste it. I just tasted the chocolate and I was impressed with that. I do have a promo code for you. I'll link up the website for energy dash foods dot com and if you use the promo code Simms, that’s S I M M S, you will save 20% I told Chris I was going to be talking about it on the show, he offered the promo code. So I just wanted to get it out there and tell you what we thought. It's always really nice when you can support a business that a fellow person in the diabetes community is involved with. So thanks, Chris for sending those all the best with it. And again, all the info in the show notes. Speaking of products owned by a person with diabetes, you know about this right Diabetes Connections is brought to you by One Drop, and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that the sleekest looking and most modern meter My family has ever used. And it's not just about the modern meter setup, you can send your readings to the mobile app automatically review your data anytime. Instantly share blood glucose reports with your healthcare team. It works with your Dexcom Fitbit or Apple Watch and they're awesome test strips subscription plan is amazing because many test strips as you need and they'll deliver them to your door did I mentioned the CEO lives with type one, One Drop diabetes care delivered, learn more, go to diabetes. connections calm and click on the One Drop logo. My guest this week has been going to camp for as long as she can remember, Sam Stevens was diagnosed with type one at age five. She went to diabetes camp that summer and never looked back. This year, she's helping run something completely different, a virtual program for kids at Clara Barton camp and camp Jocelyn, both programs of the Barton center for diabetes education and independent nonprofit. There are a lot of other camps with virtual programs this year, and a few that have gone ahead with their programs in person. Now, I asked about that in the Facebook group, which you should join if you're not already in it's Diabetes Connections the group. So you can find lots of information on camps there and just see what other people are doing around the country. Our diabetes camp program was cancelled this year. But Benny had decided not to go this year, which made me kind of sad he'd been going. He was seven years old. He was set for the regular camp I talked about earlier. And that was scotched as I mentioned that I am excited that the camps are going ahead to at least try to help connect campers with their community. So here's my talk with Sam Stevens. Sam, welcome to the show. I know this is a very different kind of summer. So I appreciate you taking the time to kind of explain things. Thanks for being here. My pleasure. Thanks for having me. Before we jump into what what Barton and so many other diabetes camps are going to look like this summer. Let me just ask you a couple of quick questions about you and your experience because you have been going to diabetes camp, probably for as long as you can remember. Do you actually remember your first summer? Sam Stevens 8:32 I do. I remember my first day. I remember where my bed was. I remember my trunk that I covered in stickers when I was six years old. And I remember it being the best experience of my life. Stacey Simms 8:48 You were diagnosed right before you went to camp where you were just five years old when you were diagnosed, and then that was maybe the first summer that you were able to go. Sam Stevens 8:54 That's exactly right. Stacey Simms 8:56 Do you remember anything about your diagnosis at that tiny, tiny age? I mean, that's really young. To think back to but I'm curious. Sam Stevens 9:03 Yeah, I actually, I remember being in the hospital, I remember that there was a fish tank in the hospital and the children that really liked going to. I remember being confused. And then I remember, you know, life obviously being different. But I think, I think in a way, I'm lucky that I got it earlier before I could really remember the stark difference between before having diabetes and after having diabetes. So for me, it's always just been normal life for me. Stacey Simms 9:40 It does seem to me that going to diabetes camp can make it seem even more normal. I don't have diabetes, but just in my son's experience. It's so nice to be around other people going through the same thing, especially when you're a little kid. Did you know anybody at home who lived with type one, or was it just the summers for you? Sam Stevens 9:57 It was just the summers. I didn't know Anyone and so exactly like you said, going to camp where everybody just gets it. Everybody just understands what you're going through when you say that you feel low or high you need to eat or can't eat is was so comforting to me and really taught me a lot I learned most of what I know about my diabetes management from camping even from my my friends and community in the years since camp Stacey Simms 10:31 you I have to tell you I'm struggling a little bit with doing this interview this year because I'm such a big fan of camp and every year we talk about diabetes camp but I always in the back of my mind hope that a parent that has not yet sent their child will listen and feel really comforted and excited about camp and and really make the dive in and and as I'm talking to him thinking, but there is no camp this year. But there is kind of Camp let's let's talk let's try to look on the bright side of this because I know Gosh, so many camps. And people like yourself are working so hard to make sure there is a camp experience. Let's just start and dive right in. What is Barton doing this summer? Tell me about your virtual camp. Sam Stevens 11:11 Great. So, Barton is running a virtual camp. What happened was a bunch of volunteers or alumni who you know all have been keeping intact, especially since the pandemic started, and a lot of people have sort of reconnected with friends. We all heard that camp was very, very sad, we canceled this year. And because it had such a profound impact on each of our lives, we got together and thought, hey, what can I do to help campers be able to experience that can't magic and not lose out on all of the value that they would without campus? Stacey Simms 11:54 So this is pretty much a volunteer effort that that came about from from the alumni. Sam Stevens 11:59 This is 100% volunteer effort sorted by alumni. And this also includes people who would have been counselors or admin staff to so multiple camp generations if you will. Stacey Simms 12:15 I love it. That's fantastic. So you know, there's not going to be the campfires and the, you know, the bunks and all the stuff that happens in person. I assume it's more than a couple of zoom calls. Can you tell us a little bit about what you're planning? Sam Stevens 12:29 Definitely. So we actually are going to have campfires and we are going to have cabins and of course they won't be in person. But what we've done is we've created a program where every day for a couple of hours a day, between two hours a day we have various different activities. those activities ranged from your typical, you know, arts and crafts or dance classes and stuff like that. To cabin time where we give you know every all campers have been assigned to cabins, and each of those cabins have dedicated counselor. So the counselors during their cabin times will facilitate definite games and icebreakers and pen pals and things of that nature. And then the third pillar is the all camp activity. So the campfires and the dance nights. And all of our amazing volunteers are recreating each of these programs virtually. Stacey Simms 13:28 That's so great to hear. What's what is your hope for a new camper, right? Somebody who's seven years old and was just diagnosed or somebody who's 14 years old and doesn't know anybody, what would be your hope for a virtual program for somebody like that? Who doesn't know anybody. Sam Stevens 13:44 So my hope for a camper who is brand new to camp is that they get that same feeling that I am not alone, that there are kids who look like me sound like me, act like me have my shared experiences Even if we don't, you know, get to meet in person, I still know that they exist, I still connect with them, I still make friends, and have that shared deep commonality of having that this profound thing in common. And I think it's a great way for people to improve their so especially if it's a younger kid or someone who just hasn't gone to camp before they can learn about it, they can experience it virtually. And then oh my gosh, this is how great it is to imagine how fun is this person and also get to experience it. And we're going to have sessions with health care providers, who will be there to answer questions and we do what's called scoop sessions, which it's an acronym for something and honestly, it's been around as a camper, and I have no idea what it stands for, but it's always Stacey Simms 14:58 great. Sam Stevens 14:59 I think Maybe someone older and wiser than what it stands for. But that's rare. Health Educator will talk to campers either kind of in a question and answer thing. campers can kind of submit questions anonymously that they might not be comfortable talking about with, you know, a parent or a doctor that they need some more, you know, pure conversations about it can be a nutritionist to help teach carb counting, you know, things of that nature that I think especially for new campers, it just normalizes it, right? If if you just kind of are in your own isolated life, the only real touchpoint you have with your diabetes management is most likely at your doctor's office every couple of months, right? Sometimes people are lucky enough to know other people with type one or go to school with other people. But a lot of times kids are just isolated. So this is a real exposure to the fact that kids are not alone. Stacey Simms 16:00 And I wonder too, sometimes there's a misperception that diabetes camp is all scoop sessions, right? It's just all diabetes education, you're gonna con gather round kids will sit in a circle and talk about how to change an inset. Yeah, where the opposite is really, really true. I would imagine that even in those sessions, it's more, you know, it's learning in a fun environment. But every diabetes camp is a little bit different. You know, so I assume that the learning experience at Barton is kind of just melded into the camp experience. Has that been your understanding and experience over your time there? Sam Stevens 16:34 That's exactly right. We, it's it's integrated really organically on a daily basis in the sense that the cabin will do check their blood sugars together and give their insulin together which is constantly an education, educational opportunity for campers, especially those who are less familiar with pre qualifying or carb counting or Doing slight changes, etc. And again, that's just integrated throughout the day. So there's just a constant learning element, as well as the more times that are set aside for doing an education session. And while of course campers are, you know, often like, I don't want to go to school for this class, whatever the the team, you know, works really hard to make it fun. So we always play you know, games like diabetes trivia, or you know, card counting bingo and stuff like that, to really try to make it can't be. Yeah. Stacey Simms 17:37 So let's talk about your camp experience because you were a very young camper. And you've obviously stayed you, you know, you were very young camper. Then I imagine you're a counselor, you're a volunteer, volunteer lead of this whole thing now. Um, why did you stick around for so long? Sam Stevens 17:53 The people, it's honestly the people who I've met. They're their family. To me. We always camps family theory. These are people who have mad and grown up with that I literally trust with my life. We will just always be there for each other. And that's all because of camp. I would have never met these people, I would have never learned what everybody has been able to teach me if it weren't for camp. Stacey Simms 18:22 And I know this year is unique. But is there anything that you'd like parents to know, whether their child...
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"A First Look Under The Hood" - Control IQ Studies & What's Next From Tandem
06/23/2020
"A First Look Under The Hood" - Control IQ Studies & What's Next From Tandem
Tandem presented new studies at the recent ADA conference and got approval for some of the youngest people with diabetes to use their newest tech. Steph Habif is Tandem’s Senior Director of Behavioral Sciences. She shares what those studies found, gives us more information about Control IQ and touches on what products are up next for the company. In Tell Me Something Good, great news about college scholarships for students with type 1. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes 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, Tandem presented new studies at the recent ADA conference and got approval for some of the youngest people with diabetes to use their newest technology. But Tandem is also keeping a close eye on including many more people in future studies. Steph Habif 0:37 It's a shared responsibility across many communities to figure out how to make it easier for different types of people to be included in this research. Stacey Simms 0:48 That's Steph Habif, Tandem’s Senior Director of Behavioral Sciences. We'll talk more about what communities she means there and why Tandem wants to reach out more. And of course, we talked about Control IQ And what's next for Tandem? In Tell me something good great news about college scholarships for students with type one. 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 Diabetes Connections. I am so glad to have you along. I am your host Stacey Simms. We aim to educate and inspire about diabetes by sharing stories of connection. This time of year we are sharing a lot of stories about technology and studies and that is because the American Diabetes Association Scientific Sessions conference has recently concluded so every year at this time, there's new information. Sometimes it is also timed with FDA approvals like we saw last week with the Libre 2 and with Tandems approval that we're going to talk about for the Control IQ software to be used down to age six. It means a lot of information. It means some bonus episodes, it means some playing with the schedule. Because just trying to get this information out in podcast form can be a little bit more difficult. But you know, that's what I am here for what I love to do If you're new, my son was diagnosed with Type One Diabetes right before he turned to my husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting and local radio and television news. And that's how you get this podcast. And just a quick note about my son Benny, I realized the other day, so we're 13 and a half years in with type one, which means we're coming up July 4 which his 13 year anniversary of wearing an insulin pump, which I cannot believe and I remember it like it was yesterday. So I'm going to maybe do an episode or talk about that in another episode, looking back on what's changed and you know how to pick an insulin pump and all that kind of stuff, but oh my gosh, oh, I can't believe he's 15. Speaking of Benny, the world's worst diabetes mom is now available in more places. My publisher reached out to me. We are now sold online at Target and Barnes and Noble and pretty much expanding to every place You can buy a book online, I didn't realize this was a thing that we started on Amazon and now we are elsewhere, which shows that it's a good thing that I have these people to help me out. But it's also available in library form. And I'm still investigating this. So as you listen, if you get ebooks, that's the library form, it would have to be an E book, you know, Kindle or something like that. If you have a service that gets you library books, check it out, let me know where it is. Because I haven't been able to exactly track that down with COVID. I think there's some issues. I'm trying to get the hardcopy into libraries too. So that's something that you could really help me out with. And I have to give a big shout out to Molly Cooper. Molly lives in the UK. She sent me a message that she really enjoyed the book. It was so nice of her to reach out like that. So of course, I asked her a little bit about it. You know, I have some UK readers, but I'm interested in the process. There's a different Amazon site for different countries. So I was just interested in how it all worked. And then she posted in one of the diabetes parenting Facebook groups that she belonged in, and oh my god. Molly, thank you so much. A bunch of people talked about the book. And it was such a nice thing for you to do. So if you've read and enjoyed the world's worst diabetes Mom, I always ask please leave a review on Amazon that helps us so much when people are looking to see if they want to buy the book or get the book. But if you could also post in your Facebook group or on your timeline about it and tag me, but it would be so helpful to spread the word because let's face it, this isn't gonna show up in the New York Times Review of Books, right we have the community to spread the word and it may be immodest to say but I do think it's a book that can help people it's not just our story. There's a lot of advice in there and a lot of learning that I did over the years, I believe very much in it and I really appreciate those of you who are already spreading the word if you're ready and you don't like it forget you know me! In just a moment I'm going to be talking to Tandem’s, Steph Habif about Control IQ, new studies and lots more. But first diabetes Connections is brought to you by a One Drop and getting diabetes supplies. It's a pain let's face it. Not only the ordering the people up the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They have our personalized tester plans, plus you get a Bluetooth 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 prescriptions no co pays required. One less thing to worry about. not that surprising when you learn 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 Steph Habif. She is the Senior Director of Behavioral Sciences at Tandem which means she really advocates for the people who use the technology. She presented some of the studies we're gonna be talking about at ADA and of course has presented elsewhere and a quick note if you are new to the show, we use The Tandem system. They're not a sponsor of the show, but I know I am biased toward Tandem. So I want to make that disclosure. First thing I just love the way it works. Look, it's not perfect nothing is but we have been using Tandem for three years now. We switched from Animas insulin pump in August of 2017, just as the Dexcom G 5 update was approved for for Tandem. So basically we got a pump and then we immediately updated the software. We have done two other updates the basal IQ last year and we went to Control IQ in late January pretty much just as it hit the market. I can't believe it has been six months already. So well. I don't think that influenced the actual questions I'm asking. It certainly influences how I feel about the system. So here is my interview with Tandems, Steph Habif. Steph, thank you for joining me. I'm so excited to talk about Tandem and learn more. Thanks for being here. Steph Habif 6:55 Thanks for having me. I've been a listener of yours for a while so it's a real pleasure. Thank you very much Stacey Simms 7:02 this year's ADA very different may start by just asking you what that was like for you to to present and have to do everything virtually. Steph Habif 7:08 Yeah, it was definitely, I think unique and interesting experience for a lot of us especially people who regularly attend the ADA each year. And I'm not gonna lie. My favorite part about the event is getting to see people and kind of have very energized Creative Conversations together in person, I think a lot of brainstorming and some of the best ideas, birth from, you know, getting together with kids from all over the world at meetings like that. So that part was kind of missing, obviously this year. But given what's happening in the world, I think it was put on fabulously well produced really, really nicely. The excitement leading up to the conference was there that was a part of my experience this year for sure, like every year, and then it all happens through email and chat and tech So my eyes hurt. At the end of the conference, I think my eyesight has taken a little bit of a hit in the past couple months, like a lot of other people. But there was some very exciting information that got presented. Stacey Simms 8:12 Yeah, let's talk about some of that. We've talked about Control IQ in depth before its launch or right as it was launched. Tell us about some of the presentations here. I know one of them was Control IQ in the real world, the first 30 days. Tell me about that. Steph Habif 8:29 Yeah, so that was a proud moment for me and my team, the scientific posters that we presented at this year's ADA. I think one of the people you have had on your podcast to talk about Control IQ is Molly Malloy and she's on my team here at Tandem, we get to work together. She was one of the researchers whose name was on these presentations at ADA and the first 30 days. That was really our first look under the hood, so to speak. So one of the things that my team here at Tandem is responsible for is post market surveillance and user experience research. Meaning once the FDA approves or clears a medical device, like the T slim X2 and people start using it in their everyday lives, the job of my team is to observe, measure, learn, how's that going for people? whether it has to do with their glycemic outcomes, like time and range, or quality of life, things like how's your sleep? Those are all the things that we're responsible for researching and studying. Now, what we did for a DEA was we didn't have very much time with Control IQ in the market before the ADA deadline presented itself. So Control IQ came to the US market starting mid January, and we had to have all of our materials submitted to ADA by the second week of March, so not a lot of time. So like I said, sort of first look Under the hood, meaning we went into our databases into our T Connect web application, back end systems, and we use some research methodologies to kind of see how it was going for people. What sort of glycemic trends and outcomes were we seeing for the early adopters right out of the gate, and we specifically focused on folks who software updated. So I think Benny's a software updater - he was on Basal IQ leading up to Control IQ. And how old is Benny? Again? He's 15. So he was probably included in our analysis. Absolutely. So sorry, no. Yeah, so anybody who was age 14 or older and had at least 21 days of use on control, IQ technology, leading up to march 11, was included in this analysis. So Stacey Simms 10:52 he was he was definitely in there. And you would have seen a great response. I don't mind telling you. Steph Habif 10:56 Yeah, so this information that we presented at ADA Like I said, we didn't have that much time. So really data mining to look at glycemic outcomes. So it was a retrospective data analysis exercise, essentially, which is a very common thing to do when it's your first look at sort of what's happening in the real world. And we were really pleased to discover that overall real world users are experiencing an increase in time and range of 10%. Before updating to Control IQ. The folks in this study had a time in range of about 68%. And throughout their first 30 days on controlling IQ, they experienced an increase to get that overall time and range metric to 78%. And what's exciting about that is that 10% jump matches what we saw in our control, IQ clinical trial. Stacey Simms 11:53 Did you have any data about ease of use? In other words, do people continuously use it? Did people have sensor issues? If you have have problems figuring out how to adjust anything I know it's it's tough to glean in such a short time. I'm just curious if you learned anything else. Steph Habif 12:06 So for the purpose of what we presented at ADA, we kind of kept it really simple. Again, because we didn't have very much time we mined data we we worked with what was available to us. And so we really focused on things like changes in time and range hyperglycemia hypoglycemia, and we didn't for the purposes of what was presented at ADA, talk about quality of life, things like sleep improvement, but what we do know is that for the folks who were included in this analysis, overall, they experienced the percent of time in closed loop automation was 96%. And that's really exciting. Now for the Control IQ technology system. The only reason a user isn't in automation is if they lose connection with their CGM for 20 or more minutes, that's it. And then once CGM is reconnected automatically, you're back in that automation close loop. So that's really elegant and simple. And that came through in these metrics that we presented at ADA. Stacey Simms 13:17 Yeah. So that's interesting. I mean, not to jump to a conclusion. But let me just make sure I'm hearing you right. So we can pretty much conclude if 96% of people using Control IQ, excuse me, if people using Control IQ stayed using it 96% of the time in automation. That means that their sensors were working that things were chugging along just as they should. Steph Habif 13:35 Yes. And thank you for bringing that up. So we have some consensus guidelines on data integrity for this type of research. When you're doing real world research like this, the guideline is for the purposes of data integrity, to include CGM rates that are 70 to 75% or above. So what that means is in our analyses for the ADA we included people who had at least 75% CGM connectivity over that 60 day period. Now in the clinical trial for Control IQ, the investigators reported CGM connectivity in the high 90s. That was a way that we could sort of control for that variable given that we were doing a retrospective data analysis, if that makes sense. Stacey Simms 14:27 Yeah, it does. Because it's really important. And you know, this people in the diabetes community, there's separate issues here, right? There's Control IQ. There's the Tandem pump, but there's the Dexcom sensors, which Listen, it's not a Dexcom interview here. But we've talked a lot on this podcast about people who just have trouble with the sensors, and sensor failures and things. So I'm glad to hear you clarify because I'll be honest, that 96% number didn't really sound real world to me, but it makes a lot more sense when you understand that it's already looking at people who have good sensor luck. I don't know what to call it. Good sensor usage or It lasts. Unknown Speaker 15:01 Connectivity. Stacey Simms 15:03 Yes, connectivity, that’s what I was looking for. Yeah, that makes a lot more sense. There was another study, if I'm reading this correctly about people with type one and type two, use the Control IQ. I didn't know anybody was type two was was really using it. Can you speak to that? Steph Habif 15:16 Yeah, that's pretty cool. So it turns out we have a fairly present segment of our customer base that have insulin dependent type two diabetes. And so again, first look under the hood, we sort of sat there and we were curious, and we said, well, we have some people who are updating software updating to Control IQ who report that they have type two diabetes, I wonder if they're experiencing things differently than folks with Type One Diabetes. And it turns out that both people with type one and type two diabetes are experiencing significant improvements in time and range with use of Control IQ. So the second publication that we presented at ADA was looking at glycine outcomes type one versus type two. Now you've heard me say that folks with type one in our analyses experienced a nine or 10% increase in time and range as a result of their software update. And for folks with type two, that was a 6% increase in time and range. But here's the really cool part, the analysis that we did for looking at the difference between type one and type two, we required a minimum of 14 days of use leading up to the software update, and then 14 days of use after the software update, which is half the amount of time from our first analyses. And so what that means is by seeing that our folks with type one got to a 9% improvement in time arrange, it means that those improvements are happening really quickly, right after the software update. Stacey Simms 16:46 That's really interesting. I want a little dig a little deeper into some of these studies. But I also want to kind of do some bullet points here. So let's talk about Control IQ okayed for young children, because I just happened. Yeah, can you speak to what those studies found? Was there anything different or anything parents of children down to the age of six now should be thinking about anything different? Steph Habif 17:06 I don't really think so. We recently, just a couple days ago, got our FDA clearance for the pediatric indication for Control IQ for children's six year old Jr. Before then it was previously approved for ages 14 and older. We know investigators have been doing research and even younger populations. But right now we're only approved down to age six. And what the clinical trial that focused on ages six to 13 using Control IQ saw was the sensor timing range increase to 67% from 53%. compared to those in the control group, and overnight children using Control IQ technology in the same study state and range an average of 80% of the time, those glycaemic outcomes match what we're seeing in the real world with a slightly older group, and so it's looking very consistent. So far across the board, Stacey Simms 18:02 one of the things I wanted to ask you about these studies and in Tandem isn't the only one who does this. It looks to me like a lot of the automated studies that I'm reading from Insulet, Medtronic and some of the other companies, was that 68% in range number that you mentioned, like the people who started when from 68 to 78, which is fantastic. But we know that so many people with diabetes have like 30%, time in range, right? They need this technology so badly. And I'm wondering, can you just speak to that in terms of I don't know why the studies, and I was glad to hear the kids study was 53% to 67%. That seems a little bit more realistic to me. I mean, God forbid you study teens. What, you know why? Why do you? Why do most of these studies take people who frankly, have relatively decent control, right, we're talking about the whole sphere of diabetes, that just people who have great technology, I would think you'd want somebody who's got an A1C of 10 and you can say, look,...
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"As Interoperable As Possible" - Talking to Dexcom CTO Jake Leach
06/19/2020
"As Interoperable As Possible" - Talking to Dexcom CTO Jake Leach
Digging deeper into recent news from and about Dexcom. Stacey talks to Chief Technology Officer Jake Leach about the news that competitor Abbott has received approval for it's Libre 2 CGM. What does that mean for the marketplace? She also asks Jake about G6 sensor issues, data gathering and more. Dexcom statement on data and privacy: Patient safety is a top priority at Dexcom, and we design our products to be as safe and secure as possible, as the data that comes into our system from CGM devices is extremely important for patients and physicians in understanding and improving diabetes management. Dexcom works with government agencies, industry partners and security researchers to apply current best security practices for medical devices to help ensure the integrity and availability of our systems. Our terms of data use are laid out for patients to consent or opt-out when they first set up a Dexcom account, so they know exactly how their data could be used and who will have access to it. In order for healthcare providers to access patient data, each patient must approve the sharing of their data to the healthcare provider through the CLARITY app. Another way patients can opt-out of sharing any of their data is by using the dedicated Dexcom receiver to view their glucose levels instead of a smart device. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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 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 to a bonus episode of Diabetes Connections. So glad to have you along as always. A bit of an unusual situation this week in the very last episode, and hopefully you've heard it. I spoke to Dexcom CEO Kevin Sayer. we taped that episode before the ADA conference actually took place. You know, the time shifting nature of podcasting. we taped these interviews ahead of time and then a couple of days or a week later, generally, the interviews air. A a couple of days after taping that interview, the FDA approved Abbott's Libre2 and this is a different CGM is able to continue transmit glucose data every minute. And users can now set the system to send alarms when their glucose is too high or too low. And previously, you had to scan the sensor in order to get any kind of glucose reads. So that is a big change, and frankly, more direct competition to Dexcom. I have reached out to Abbott in the hopes of learning more and asking them any questions that you may have Dexcom though, immediately reached back out to me and asked if we wanted to talk more about CGM and how they stack up in the marketplace. Now, I am not going to pass up the opportunity to ask more of your questions. And that's why we have sort of a Dexcom double feature this week. My usual disclaimer Dexcom as you have heard, and longtime listeners know Dexcom is a sponsor of this show. That means they pay me to have a commercial in the show. That sponsorship gets them a commercial, it does not get them any kind of approval over content. And so what does that mean? It means I don't send them all the questions. I have of time, we don't plan out what we're going to say. I hope you know, as you've listened that I don't hold back on questions and criticism from them. But we do have that relationship. And it's really important that you you know it right because we were doing news interviews here. And this interview is with Dexcom CTO, Jake Leach. I will link up more information at the episode homepage. And as always, there is a transcript. So here is my interview with Dexcom’s chief technical officer. Jake, thank you for jumping on and spending some time with me and my listeners. We always appreciate learning more about what's going on at Dexcom. So thank you. Jake Leach 2:36 It's a pleasure to be here. Stacey. Thanks for having me. Stacey Simms 2:38 Absolutely. So I just talked to Kevin Sayer. We did kind of a high level, you know what's new, what's next? How are things going? Talking about the G7? It he's of changes that have happened to the G6 COVID delays, that sort of thing. My listeners had a bunch of questions as this is the backdrop of course of the Libre news that came out Abbott's Libre 2 have got approval for use of the United States. The number one question that my listeners had was, can they talk about the price difference? I don't know if that's a CTO level question. Jake Leach 3:11 Yeah, as much as you know, I'm involved in it. We basically, when we think about the cost of the product, the most important thing to be thinking about is making sure people have access to it. So insurance coverage, we feel really good about the fact that 98% of the private insurance companies do cover the product, as well as Medicare started covers it. And in states, many Medicaid systems do also cover the product as insurance. That's where we focus our time is really on on that. And we very few of our customers actually pay cash for the product. The vast majority of everybody gets it through insurance coverage. Stacey Simms 3:48 When I look at the Libre, and full disclosure here, my husband has type two diabetes and he uses the Libre and Benny my son has used the Dexcom since 2013. Now, wow, yeah, it's funny to think about how much time has gone by. But one of the things I look at with the G7 coming and the you know, the bit that we know about it is that it will be much more like the Libre in terms of the sensor and transmitter in one. Can you speak to that in terms of the G7 in terms of size, insertion, that sort of thing? Jake Leach 4:25 Yeah, so the G7 is, as you pointed out as an integrated sensor all in one, so it's the wearable device that goes on the body includes both the sensor, the transmitter, as well as the electronics inside the wearable that are both monitoring the center and then taking that signal and sending it via Bluetooth to the different integrated display devices whether that's a mobile phone, so a smartphone with an app on it, Android or iOS, or a insulin pump for automated insulin delivery systems. Other display devices, we have our receiver that is our proprietary handheld, some people really like that as their way to access the information. So our goal is to make it as interoperable as possible, which is one of the key important points about IC GM is that it's interoperable device Stacey Simms 5:16 you And with that, I always get hung up on it. Because when I heard about interoperability A few years ago, in my head, it seemed like, Okay, well, I could switch out my pump, or I could switch out my sensor, I could use a different brand with this thing and kind of mix and match. And of course, insurance for most of us is the biggest problem for getting different devices. But it doesn't really work like that, does it? I mean, if a Dexcom g seven works with say, Omnipod five horizon, and with a T slim X to control IQ, people aren't really going to be able to just switch out devices like that and use the same sensor, are they? Jake Leach 5:51 Yeah, as usual, it's more complicated as you look at it under the hood. But the key thing about the integration is that systems have to be designed To be able to be integrated. And so one of the big moves that we made when we transitioned between Gen four, and Gen five, and then subsequently Gen six, and as well as Gen seven, we moved to Bluetooth technology, which is a much more readily available technology within the display devices. So we moved to that. And when we did that, we designed an architecture that the intelligence of the system is all on the the wearable. So all the glucose calculations, all the information that you need is actually on the little transmitter device in G6, and will be in G seven as well. And so that is the device that can be accessed by multiple displays. If you think about it, you can use your mobile phone and the whole share feature that comes along with our mobile system, the remote monitoring feature, you can use that and at the same time, you can use a tandem controller to pump doing automated insulin delivery. And so the system is really designed to have that type of integration where you've got the right information in the right places and makes it interoperable. The systems have to be designed To be connected, for example, horizon five Omnipod five, the system that is in development by insolate is being designed to be integrated with both G6, that's what they're doing their studies with as well as G seven. So you have to do the design work and do the testing to ensure that it operates safely. But interoperability is a great thing. But it isn't as simple as just pulling and pulling everything it has to be designed and tested. Stacey Simms 7:22 Yeah, it was interesting. I in my head, I always had it as well, this, you know, I can mix and match, I can figure out what I want. But when I talk to technical people, they always kind of smile at that because they understand more of the intricacies, I think of what it takes within the technology to make that kind of stuff happen. Whereas as the user, I just want to hokey pokey it around and use what I want. But we'll see as it goes down the road. Some other G7 basics that my listeners asked was, will the G7 have a shorter warm up and does it have a lower MARD? Is it more accurate than G6? Jake Leach 7:55 Great questions. The warm up time is designed to be shorter than g6. And so we're As we're landing exactly how much shorter it's going to be, but it's definitely going to be a faster warmup. Also, the mard is the average difference between the sensor and the reference measurements that we measured the performance of the device and so on. That way, we want to ensure that we hit those iCGM standards. And so I think G7 definitely has the opportunity to perform better, but it definitely will meet those CGM standards, which are rigorous and important to ensure the product performs accurately throughout its life. Stacey Simms 8:30 Can you give me a hint on the warm up? Is it going to be more an hour and 45 minutes or more? Jake Leach 8:35 No, no, no, it's gonna be It'll be an hour or less. Stacey Simms 8:40 You know, just had to double check on that. Jake Leach 8:42 Yeah, no games there. We're just we're still trying to dial in exactly what's going to be to ensure we you know, the system has to be accurate. Second, it starts up but we do value short warmup time because we know how important it is when you know you're without the sensor data for that warmup period. So you want to make sure it starts up as fast as possible. Stacey Simms 8:59 Yeah, it's interesting too. Because I'm probably an outlier but previous to we use the control IQ system with tandem previous to using that the two hour warmup really didn't bother me too much. I mean, it was only two hours especially if you came from like we did seven years with no CGM. It's really did not seem to be that big a deal. But now that we're using this algorithm, and the pump relies on the Dexcom data, two hours just seems like way too long to be without it. Jake Leach 9:27 I agree. Really interesting. Stacey Simms 9:29 Speaking of wear time, we've been very fortunate. Again, as I said, we've used Dexcom for a long time we do not really have a lot of issues knock on wood with it. He's of sensitivity which Kevin mentioned in his in our interview together, we went over that, but also with where time, but a lot of my listeners wanted me to ask if you are really checking into the people who can and there are many who can never seem to make it to 10 days on a sensor. Right who really was it whether it's because they have a young child or the body chemistry for whatever reason, it does seem to be an issue that many people can't get the full life out of a sensor. Jake Leach 10:07 Can you address that? I know you're looking at it. Jake Leach 10:09 Yeah, yeah, I've got, of course. So a couple things there. There's quite a few things we've done over time. And we continue to research on this. There's two aspects to sensor longevity. One of them is how long the sensor can remain accurate. And so within our device, we have algorithms that are checking the performance of the sensor at all times. And so there are times when we detect that that sensor signal is not accurate and not meeting the CGM standard. And so we we actually shut it off and that's when you get on the display, you get the sensor failed signal. That's basically we detected that that sensor is not working properly, and it's not going to return to functioning based on the data that we're seeing from it. As you mentioned, most people are able to get 10 days out of the sensor particularly now that we've made some changes with the adhesive as well. But there are some people who don't and with those folks, we often spend some extra time with our tech support, and kind of walk through what their issues are. And there's quite a few things that can be done to help sensors last longer. I mentioned the adhesive, we recently updated our adhesive, we've added an overlay. that's optional, people can ask if you have access to the clear adhesive that goes over the top of the white one that comes with the product. And so we're looking at lots of different ways. Because what we found is everybody's a little different in terms of what their needs are and what works for them. And so we're trying to do is have as many options that we can to make the sensors stay on and heared. And it's really that's our philosophy around sensor longevity is if I really wanted to I could I could run a study and claim that G6 goes 15 days because I know the performance would meet that the problem is not all the centers would last that long. And so what we're really after is making sure all the sensors, as many as we can get out to the labeled timeframe, not just some of them. And I think that's one of the key differences that you'll see over time between different CGM companies is we're very focused on a high level liability, you're never going to get 100%. You know, sensors will come off and they'll get knocked off. It's a challenge. But it's one that we're very focused on trying to ensure that we can have the highest flow reliability possible. Stacey Simms 12:12 Let me just follow up on that, because sensor sticking is one thing, right? I mean, I know that that's an issue in everybody's skin is different. And you have the overlays now, and the adhesive does seem to be sticking better to many people. Butwhat about people who have no trouble getting the adhesive to stick in the wire to stay in, but get recurrent sensor failure? Are there any best practices for people who seem to get that over and over again, Jake Leach 12:36 there are and it's actually often comes down to, you know, sensor placement and you know, the sensors indicated for abdominal use. And so, we often instruct folks to try at different locations. We've also, if someone's really having repeated challenges and where they're getting those sensor failures, we do have specific capability with our tech support to work with that customer and look at their data and To help determine exactly what is going on, there's a number of things to we tend to see, that happens when people are more dehydrated. So you know, kind of making sure they're well hydrated and drinking water. But if someone's having consistent problems all the time, then we really want them to reach out to us and talk to our tech support. And we can get someone who is experienced, but you know that those types of issues to talk to them and look at their data and help work through it. Stacey Simms 13:22 I don't mean to harp on it. But I've just, and I'm, I know, you may not be the right person to try to pin down on this, so forgive me, but I'm thinking like, Is it an insertion thing is it I mean, we've, anecdotally, the community has said, drink water, stick in the fattest place you possibly can maybe rock the sensor a little when you're inserting it so it doesn't go as deeply in like it's more shallow. I'm just curious with all the data that you will collect in these phone calls. If there's any, like I said, a best practice that would help or if it's just you know, you've got to talk to your local rep, maybe get an in person or zoom call lesson or talk to tech support, but you know, just a more concrete business advice, I think would be so helpful. Jake Leach 14:01 Yeah, I think a lot of it does have to do with that insertion saying, like you said, you want to put it into a place where you've got good interstitial tissue. The other thing I've seen, too, is, um, you want to make sure that it's not at a place where you're going to compress the center a lot, you know, if it's under compression, you're not getting the same amount of perfusion there have glucose under the skin. And so that can also lead to issues. There is something recently that we've released in a product that has really solved a number of issues in that people were getting sensor failures during really high glucose excursions. We've sent some solved that problem with a new version of our transmitter that is now out in the market, almost everybody has that device. Now, it did make quite a dent in those we were detecting the algorithm was detecting that really high glucose as a potential issue. And over time, we've learned through looking at the data that that wasn't an actual issue until we were able to correct that in a recent version of the device. But yeah, it does come down to kind of working through sensor insertion and placement in Don't have data that validates, you know, some of those techniques that you mentioned that says it will work if you do these things. But we have heard from the community, and in our own times speaking with patients that it has been very helpful. And some of those concepts you just mentioned. Stacey Simms 15:14 Jake, I'm sorry, can I ask you to clarify? It may have gone over my head. But when you were mentioning the newer transmitter that is out, can you just clarify what you meant by when it was reading very high blood glucose? And that was affecting the sensor? And then it sounded like you said, but that wasn't the case. Can you just clarify that? Jake Leach 15:31 Yeah, sure. So what it was, was that during really high glucose excursions, the device was detecting a potential sensor failure where it wasn't the sensor failure. There's nothing wrong with the sensor. It was working. But you know, it's one of those things that once you once you get a product on the market, you learn more about it. And so we've made several iterations to the G6 even since it's been in the market for several years to improve it. And that is one of the cases that we saw patients running into, that we resolved with the newest version of the device is that it doesn't give The sensor error when when there was really high glucose excursion, Jake Leach 16:03 and I'm just curious cuz it does sound like you've resolved it. What is really high glucose? Like over 400? Jake Leach 16:10 Oh, well north of 4, 5, 6 hundred. Stacey Simms Oh my goodness, Jake Leach 16:14 yeah, we're really, really high glucose. Stacey Simms 16:16 So if somebody has a teenager who's like bumped up to 250 and getting sensor failure, that's not...
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"A Little Bigger Than a Nickel" - What's Next From Dexcom?
06/17/2020
"A Little Bigger Than a Nickel" - What's Next From Dexcom?
Dexcom is featured in a lot of headlines coming out of this year's just-completed ADA Scientific Sessions. Stacey talks to CEO Kevin Sayer about everything from how COVID has impacted the G7 timeline, what the G7 will actually feature, adhesive changes and more. She asks why Europe got approval for back of arm placement and when we might see that in the USA and, once again, we check in on direct to watch progress. In Tell Me Something Good, a major league dream comes true. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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 and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Unknown Speaker 0:17 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:23 This week catching up with Dexcom at the ADA Scientific Sessions a time when a lot of new studies are presented. But this year COVID-19 means delays for expected tech, including Dexcom G7, which was moving ahead with trials. Kevin Sayer 0:38 It was in full force in March it was gonna continue throughout the rest of the year that came to a grinding halt. We are in the process now of resuming and replanting that schedule. Stacey Simms 0:50 Dexcom CEO Kevin Sayer goes more in depth about the G7 we also talk about adhesive changes, working with European pump manufacturers and what else Coming down the line and tell me something good a major league dream comes true. 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 Diabetes Connections. I am so glad to have you along. I'm your host Stacey Simms and you need to educate and inspire about diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have any kind of diabetes. I have a background in broadcasting and local radio and television and that is how you get the show. The American Diabetes Association Scientific Sessions is a conference where every year many studies many many studies are released and thousands of people gathered to hear what's new and to do some serious schmoozing Of course this year the entire conference was virtual, which is a terrific opportunity. You know maybe you're able to register and jump online. A lot of new media outlets offered their own platforms for you to kind of take part into the virtual conference. I've never been to a da. And while I don't plan on reading every study, you really can go online and see just about everything. I'm going to link up some of the major links, including the one right to the conference, and some of the abstracts. I think every abstract was on one of the pages I saw. So I will link up all of that information on the episode homepage. And I've already put a lot of it out on social media. And chances are good that as this episode airs the Tuesday after ADA that you may have read about a lot of these things you may have seen some of the studies, but I really like going in depth with the the newsmakers as we call them as I used to work in News Radio, but you know, the people who are putting out these studies, so this is the first of what I hope are many interviews over the next couple of weeks. I have confirmation from several of the pump manufacturers. I've reached out to some of the other tech people and people doing these studies and we'll have more information on And follow up on some of the information that came out. A quick disclaimer. As always, I always like to make this clear. Dexcom is a sponsor of this show, you'll hear their commercial later on, but they don't have any editorial control. And that means they don't tell me what to say or what to ask when I have Kevin Sayer or anybody on from Dexcom. longtime listeners know the drill. But I just like to make that clear. I'll also add we just had Kevin on the show a few weeks back, it did a whole episode when they announced that they were going to have CGM access to hospitals because of COVID-19. And I asked our Facebook group if it was a little too much Dexcom. But overwhelmingly, they said no, give us as much information as you can. So we will get to Kevin in just a moment. But first Diabetes Connections is brought to you by One Drop. You know, I spoke to the people at One Drop and I was really impressed at how much they get diabetes. It really makes sense because their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes, the people Let 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 philosophies send you test strips with a plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo. The ADA Scientific Sessions this year pretty different all virtual, but the information is still coming out. There's so much of it as always, and I was able to talk to Dexcom. now this interview happened Friday just as ADA began. And while we were able to talk about things that were going to be presented over the weekend, there's always a chance breaking news happens since the interview follow along on social media for more information if anything changed, of course we'd put it out that way. And I will link up more information in the show notes. Quick bit of housekeeping, there are a couple of terms that we throw around here that I want to make sure to just to define really quickly and kind of loosely, most of you are familiar. MARD is a measurement for CGM, the lower the MARD, the better, the more accurate and we talked about that. We also mentioned iCGM. That is a new we're just about two years old classification from the FDA here in the United States, where an integrated continuous glucose monitoring system can include automated insulin dosing systems, you know, insulin pumps, it can integrate other devices like the Dexcom G6 does with the tandem pump, that sort of thing. It also classifies it as a new type of device in a different class for the FDA, which means different things for approval going forward. I will link up more information on that but when he says iCGM, that's what he's talking about. Here is my interview with Dexcom’s Kevin Sayer. Kevin, thanks so much for talking to me. It hasn't been so long. Since we last spoke, but with the ADA once I get a roundup of everything that was happening, thanks for jumping on. Kevin Sayer 6:06 Well, thanks for having me again, Stacey. It's always fun, Stacey Simms 6:09 we have a lot to catch up on some things that we just talked about a few weeks ago. I'm going to start if I may, with something that may seem very mundane, but really caught my eye. And that is the approval in Europe, of placement on the upper back of the arm. We are a largely US based podcast, we do have large international listeners who are very interested in Dexcom. But can you talk a little bit about how that came to be? And as we have talked about before, many people here in the US were on the back of their arm, even though it's not FDA approved. So I guess the second part of that question is, are you submitting for approval here too? Kevin Sayer 6:48 Well, I'll answer all those questions. And let's start with your You are correct. People have been wearing this thing on the back of their arm for a long time, even though legally and regulatory, I cannot encourage that on a podcast. The fact is when you go to, in particular to like a kid's diabetes meeting, that's where you see all the sensors. And so we've seen that a lot in Europe, we had done some studies and there was some evidence presented that was compelling enough to the authorities that we can get that arm indication. And so we filed that and we got it. Also combining that in Europe, we got a pregnancy indication as well. So we were in a really good position with with respect to C mark. With US regulations, we have that iCGM standard. And the evidence that we presented in Europe for approval isn't strong enough to meet those iCGM standards that we have with our G6 system. But we are working on putting together some evidence in the US that we think would work and will be good enough. So we will ultimately seek a G6 arm indication. I think the other thing to look forward to as far as that when we run our G7 pivotal study, we're going to run the study on In the back of the arm and on the abdomen and on for pediatric patients and on the upper medics as well. So we'll have three labeled sites there. And that will give our patients literally the optionality labor for label indications where the center and the in the most popular places. Stacey Simms 8:17 It's interesting, when you have a chance, I understand why you wouldn't go back with the G6 and redo things like that, you know, I would imagine the cost alone would be prohibitive. But with the G7 in new systems, it must be interesting to hear from customers, not only things like arm placement, or I wonder if there are other things that you might test. In other words, I have always heard and I guess you can confirm I don't know if it's the case, that the reason that pumps and CGM should not be put through airport scanners is because it wasn't tested there. Is that the kind of thing that in the future we might see you You trying? You know, hey, let's test it with this condition. Let's test it under that condition. I mean, does that come into play? Kevin Sayer 8:55 we do all of the testing required under federal regs. For those things, I mean, I've worn my CGM through scanner, never worn anything through the scanner through the suitcase, mind you better but I will tell you some of the things we do there is, you do have a very good question there. Because you do ask, do we listen and what are some of the things we try before we lock in on our product design and what do we test and some of the things we've we've talked through and thought about what G7 because we've been at this for quite a while we've had multiple size configurations. Before we locked in on what we did. We've made it smaller, we've made it bigger. We've liked it on the size we like it on because that was the optimal configuration for the electronics and you get to a point sometimes when things are so small, you can almost lose dexterity or the ability to use it properly. We know people want a smaller less visible sensor. As we look going forward. We will continue to focus on that. we tried numerous adhesives with G7 in our research work, what sticks the most without causing problems, etc. We, we even experiment, not just from a customer standpoint or customer feedback standpoint, but from a scientific standpoint, what's the shortest we can make the sensor and still get the outcome and the accuracy that we want. So we've spent enough time on the G7 system, to whereby we've tested a number of things of that nature to figure out what the best configuration we can get is. And we balance that with getting the product approved, and again, through the iCGM standards. So there will always be when we launch a new product, there will always be some features that we leave on the table that we don't put in it that we would like to put in the next generation. But ultimately, we have to stop and say that this is good enough. It's my job to make them stop. I promise you, the guys have more great ideas than you could ever imagine. But that is a very important part of our process to really listen and test those things. As we go. Unknown Speaker 11:00 Okay, so you mentioned you've brought up now the G7. So let's jump ahead. I do have some G6 questions, but let's jump ahead and look at that. Where are you on the G7? Did the has COVID delayed things? I know you hate to put dates out there.. Kevin Sayer 11:13 All right, and I won't put a final date out there. But COVID has delayed things on a couple of fronts. The major one is the clinical study any of your listeners and involved in one of our pivotal studies where our patients go into the clinic for you know, at least half a day, at least 12 hours to have blood drawn and tested in the lab instrument is glucose values are raised and lowered. All those types of activities have ceased due to the COVID situation and we had a very aggressive clinical trial schedule. Literally, it was in full force in March and was going to continue throughout the rest of the year that came to a grinding halt. We are in the process now of resuming and re planning that schedule, but we still don't know all the dynamics of the schedule and the best example I can give you if you go to a large Diabetes Center They might have had four or five patients at the same time in the room being monitored, while the social distancing Are we going to have to? Are we going to be able to have four or five? And what protocols are the various centers going to be running with respect to those clinical trials? So we are really literally out there rescheduling the pivotal study for the G7 system. That is the biggest delay. The other thing we have experienced, and it's to a lesser extent, is just the effect of COVID-19 on all of the people involved in this process. You know, I was talking to somebody the other day, and they used to quote, it takes a village to raise a child it sure as heck takes a community to build a product. And we do depend on a number of other suppliers who encountered their own COVID difficulties, the easiest one that comes to mind which you summon the molds for the plastic or an 18 month lead time and the molding company was hit by COVID and literally shut their whole factory down for a month. And that's not the mold makers. That's not a problem that just does Just reality, we put all of the operational pieces of the schedule back together. We're comfortable with those timeframes. Now we've got to get the pivotal study up and running and get it big enough. And I will go back to you know, I've talked about iCGM and the bar that the FDA has said, This isn't a study, we can go run with 80 patients and call it a day, there's going to be several hundred patients here. To the extent statistically we can come up with models to decrease the size of this study, we will, but we do analyze it, because the criteria are such and the one that they explained to me that rang the truest in the mid range of the good range of sensors, you know, timing range between 70 and 180. If we have 1000 data points, and if seven of those are off by 40 points, or 40%, the whole trials done, and our biggest source of error in the studies is not the sensor, and it's not because the centers aren't great because they are, there's just so many pieces of paper and so many things that have to happen. So we are really refining that process. Given the fact that we can't run studies now, we're very optimistic once we get them going, and we'll do well. We're going to run a study for Europe, in addition to that, and file that separately, so you'll hear more timeframes from us. But it's going to take longer than even a couple of months to have the perfect schedule laid out a timeframe is not coming for a while. Stacey Simms 14:17 Can you share anything about the G7? In terms of what makes it different? And why move ahead with a new type of sensor? Kevin Sayer 14:26 and I'll go back to my first statement to listening. The one feature our patients have all said they want a smaller, and that's pretty universal. When we embarked on this many years ago, we literally started with something the size of an m&m. Now the G7 is a little bigger than a nickel. It's not as small as an m&m, but it's still pretty small. And we wanted to do that. We wanted to eliminate some of the difficulties with respect to transmitters and pairing the whole G7 system is disposable. We also when we looked at G7, and when we started down this path We designed this from the very beginning to manufacturer in an automated manner. There will be humans manning the machines but these aren't going to be human lives. Everything else we've done we designed around the fact that we manually put everything together or have many manual processes now G6 is about to the point where that will be pretty much all automated or manual lines will go away but we wanted to build a product that we could build 10s if not hundreds of millions of in a repeatable manner and our previous generations or product, even G6 up until now I think G6 has now crossed the barrier where we can build lots of them but build g five system says you could have never got to the volumes we anticipate getting to as as technology continues to expand and explode and i and i think what we've created and our goal which he said is to give us a product configuration that anybody can wear and then it will have multi uses. It's as big a step forward from G6 is G6 was for G five. Stacey Simms 15:56 When you say the whole system is disposable in the size of a nickel Retreat you want to avoid transmitter issues? Is it all in one is the transmitter and the sensor Kevin Sayer 16:04 transmitter and sensor all built into one unit yes Stacey Simms 16:07 I'm you know, having been with Dexcom for more than six years now and I think we started in the g4 Platinum I'm trying to visualize Kevin Sayer 16:16 No, it's much smaller and much thinner and it literally if you wear a G7 you have no idea it’s on your body. Stacey Simms 16:25 Really interesting and you anticipated having a similar more similar you know accuracy as the G6 Kevin Sayer 16:31 yes, yes, it has to meet the iCGM standards and and so we've we're designing it that way. We're designing the algorithm the pivotal studies along those lines. And right now what what is becoming very clear to us as we go through these statistics, while MARD is always important from an overall perspective, the iCGM standards are more important than than just the margin number is important that these things be reliable and offer the same experience every time. So we Certainly you have to have a good MARD to be approved on those iCGM standards, but the reliability of the sensors is every bit as important. We're focused on both. Stacey Simms 17:09 Well, as we look forward to that, as you said, it'll be a while because of COVID and other delays. My listeners, as always have questions and one that has come up quite a bit. We'll go back here to the G6 and current manufacturing is a question about whether the adhesive had changed recently on the G6. As always with me, it's anecdotal. I don't have access to studies or thousands of people. But we've noticed within the Facebook group that I run for the podcast that more people are reporting, rashes and problems with the adhesive with the G6 than they had in months and years past and the question came up is has something changed? Kevin Sayer 17:43 Yes, it has. There's a very fine balance. On the adhesive side. We warranty our product for 10 days. We say this as a 10 day sensor, and one of our most common occurrences of replacing a sensor as it falls off, in fact, the most common...
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"You Can Either Help Us or Understand We'll Do It Anyway." One Couple's Story in the DIY Diabetes Movement
06/09/2020
"You Can Either Help Us or Understand We'll Do It Anyway." One Couple's Story in the DIY Diabetes Movement
Melissa and Kevin Lee played an important role in what we know now as NightScout and the DIY movement. Their interest was initially sparked because they wanted to have children. Melissa lives with type 1 and Kevin has an engineering background. They jumped in with many other "hackers" to create what we know now as Nightscout and other DIY systems. By the way, the Lee's children are now ten and eight! In Tell Me Something Good, wedding bells for a T1D couple – which spark some fun stories from others in the community.. and an update on a change my son made after our last episode. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Listen to our #Wearenotwaiting ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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 Real Good Foods, real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:19 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:25 This week, Melissa and Kevin Lee played an important role in what we now know is Nightscout and the DIY movement. It's kind of hard to remember but those early days very different. Melissa remembers what it was like the first time Kevin for husband followed her numbers and acknowledged what a hard day she'd had. Melissa Lee 0:45 And I didn't realize I just looked at him and he said, this is how every day is, isn't it? And like I still get chills thinking about it. They say it was the first time that anybody outside of me or another person with diabetes looked at I said I see you. This is hard. Stacey Simms 1:02 Melissa and Kevin were interested initially in the DIY movement because they wanted to have children. Their kids are now 10 and eight. We have a lot to talk about. And tell me something good wedding bells for a couple who live with type one. And that sparked some fun stories from others in the community. plus an update on a change my son made after our last episode. 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 Diabetes Connections. I'm so glad to have you here. I'm your host Stacey Simms we educate and inspire about type 1 diabetes by sharing stories of connection. And this is a story of connection. Melissa and Kevin have so many wonderful anecdotes to share about finding the DIY community about those early exciting days about the projects they worked on. And we talked about what it's like as a married couple to go from not sharing any information. about diabetes to being some of the first people to be able to see CGM information, you know, how does that change your relationship? How do you talk about it? And we'll get to that in just a couple of minutes. It was great to talk to them. I wanted to bring you up to speed first, though, on something that I mentioned. Well, Benny mentioned it when I spoke to him last week. So Benny is my son, if you're new, he was diagnosed right before he turned two. He is now 15 and a half. And we talked last week about changing a bit of our routine, he has been taking a long acting insulin called Tresiba for almost two years along with using an insulin pump. It's a method called untethered, I'm not going to rehash the whole thing. I've talked about it many times. But if you are new, that will link up more information in the show notes and you can go back to listen to last week or previous episodes with Benny about why we did that. bottom line he was using so much insulin because of puberty and maybe some other issues genetics who knows that it was very, very helpful to add an additional basal source that took the pressure off the pump inset, but Over the last month, his insulin use has gone way down. And that is because of three factors. He's probably coming out of puberty, he has lost a lot of weight. And we are using the control IQ system, which we noticed right away meant we were doing far fewer big corrections and we just used it so much less insulin on it. So during the show that the last endocrinology appointment, Dr. V, had said it was fine to go off the Tresiba, no problem, do it when you want if you want, and Benny said that he did want to do that. So as I'm taping this, it's probably about eight days since we made this switch. It takes about two to three days everybody's a little different to get Tresiba out of your system. It works a little differently than some other long acting so it takes longer to get out of your system. We did have a rocky three days but we were used to that we knew that was coming and just as I had hoped control IQ the software system with the tandem pump and the Dexcom just has worked even better than it did before and I don't talk about specific numbers with my son. That's not how we Roll, but just to give you some perspective has been about 70% in range, you know, it goes up, it goes down very happy with that number. He has been 80% in range, I think 82% in range for the last seven days as an average and two days where he was like 98% in range. It's crazy. So I don't think that'll continue because that's how diabetes works. Right? Don't you find sometimes it like lulls you, when you make a switch, it always starts out great, and like a week or two later floor like the rug just pulled out from under you. So we'll see. I want to get to Melissa and Kevin. But at the end of the show, I'm going to talk a little bit more about some changes we've made recently, in addition to Tresiba, we have changed how we use sleep mode. So stay tuned at the very end. I'm going to talk about that. But I know not everybody uses control IQ. So standby Diabetes Connections is brought to you by Real Good Foods. It's really easy to compare and see what we love about Real Good Foods. If you put them side by side to other products, I mean their breakfast sandwiches, six grams of carbs, 18 grams of protein compared to like, you know 2636 grams of carbs in other products and a lot less protein and a lot more junk. If you look at their cauliflower crust pizza, you It's amazing. Not every cauliflower crust pizza is actually low in carbs, you know this you got to read the labels. So Real Good Foods, nine grams of carbs in there cauliflower crust pizza. Some of the other ones have 3540 grams of carbs. I know everybody eats low carb, but you know, you want to know what you're getting. You want to really be able to see, well if I'm eating a cauliflower crust pizza, you might as well eat you know, a bread crust if you want 40 carbs per serving. Real Good Foods is just that they are made with real ingredients, you know stuff you can pronounce. It's so easy to find. They have that locator on their website, it's in our grocery store. It's in our Walmart, and you can order everything online, find out more, go to Diabetes, Connections comm and click on the Real Good Foods logo. My guests this week are part of the history of the diabetes DIY movement. longtime listeners know that I am fascinated by the we are not Waiting crowd. And I can't say enough about what they have done for our community. In fact, I'm actually trying to put together an oral history. And we've talked to a lot of people since 2015. When I started the show about this movement. The big problem is a lot of these wonderful engineering and tech types are a little spotlight adverse. You know who you are, but I'll get there. I did reach out to Kevin and Melissa, because, you know, I've talked to Melissa a few times about pregnancy and type one and other issues. I think that the show we did as a panel with other guests about pregnancy in type one and Steel Magnolias is frankly, one of the top 10 episodes, not because of me, but the guests are so amazing. And that night gets so much praise on that episode, people, you know, women pass it around. I'll link that up in the show notes. But you know, I hadn't heard Melissa and Kevin's story, and their names always come up when we hear about the early days of the DIY builders. So our talk today is about much more than the technology it's also about marriage and kids and diabetes and sharing data. You know how that affects your life. Quick note, Kevin now works for Big Foot biomedical and Melissa works for tide pool. If those names don't mean anything to you, if you don't know what those are, or you know what they do, might be a little bit of a confusing interview. There's some presumed knowledge here, I will put some links in the show notes, you may want to go back and listen to previous episodes about the we're not waiting movement or just check out the links. Also, it is really hard to get people to acknowledge the difference they've made. These are all very modest people. God loves them, but I do try. So here's my interview with Kevin and Melissa Lee, Melissa and Kevin, I am so excited to talk to you two together. Thanks for making time to do this. I know how busy you both are. Melissa Lee 7:43 Thank you for having us on. This is a fun thing to get to do. Stacey Simms 7:47 I don't know if Kevin's gonna think it's that fun. We'll see. And I say that because in the small way that I know you you don't seem like you're quite as conversational and chatty is as we Melissa, well, we'll see how it goes. Kevin, thanks for joining us and putting up with me already. Melissa Lee 8:04 Well, you know, he actually is until you stick a microphone in front of his face. Oh, okay. You know, beyond that, yeah. Stacey Simms 8:12 Well, let's start when when you guys started, and Melissa, I will ask you first How did you meet? Melissa Lee 8:17 Oh, this is a story I love to tell. And Kevin's gonna already be like, why did I agree to do this? So this was like 2006 and I spent a couple of years doing internet dating. And you know, I'm very extroverted and and like a go getter. And I had just been on, like, 40 bad days, basically, on the internet. Basically, I was broke from spending money on lots of different dating sites, and I found a free one. But during that one, it turns out that this guy was on it because one, it was free. And two, he liked their matching algorithm that tells you a little bit about why you needed so we met online and then What a year and a half later, we were married. Wow. So yeah, we were married in late 2007. At the time, I was a music teacher. And Kevin, how would you describe what you did in the world? Kevin: I was working at Burlington, Northern Santa Fe, just deploying web applications as a contractor to IBM. And then in our early years, you worked for capital, one bank doing infrastructure architecture, and then later for American Airlines doing their instructor architecture. So we like to say, you know, we've been in finance he's been in travel is been in transport. He's been in lots of different fields doing that same thing that I just said infrastructure architecture, which I will not explain. Stacey Simms 9:44 So, Kevin, when did you go from checking out the algorithm of the dating app, to noticing that perhaps the diabetes technology that your girlfriend and fiancé and wife was using, when did you notice that it really could be done better. And then you could do it Kevin Lee 10:02 became a little bit later. And it first I kind of just let her her do her own thing. She managed it. She managed it well. And then as we started to progress, and we both wanted kids, Melissa Lee 10:16 yes, we got back from the honeymoon and I had babies on the brain and two of my bridesmaids were pregnant. And then I have this whole, you know, in our pregnancy podcasts that we did together, I had babies on the brain, but I had this diabetes hanging over me. And I think that that was a huge motivator for both of us. So like mid 2008, my insulin pump was out of warranty. Kevin Lee And so that's that's whenever I really started to encourage her and I started getting involved and saying, hey, let's let's go experiment. Let's find what's what's right. Let's look at what else what other options exist and didn't find too many other options but no, we I did switch I switched insulin pump brands and we started talking about this new thing that was going to be coming to market called the CGM. Melissa Lee So I got my first CGM within the next year. And Kevin immediately started trying to figure out how it works. So this was the freestyle navigator. And this was like 2009. I think I was maybe already pregnant or about to be pregnant. And Kevin was trying to hack this device. Stacey Simms 11:25 So what does that mean? When you said you started to figure it out? What did you do? Kevin Lee 11:29 Well, it bugged me that the acceptable solution was the we had this little device that had a range of measured in the 10s of feet. That was it. And I had a commute. At the time, I was working at American Airlines and my commute was 45 miles one day daily, and she was pregnant, and I just wanted some sort of assurance that she was safe and there was no way to get that and I just wanted to be able to You know, it was obvious that this center was sending the data that I wanted on the available through an internet connection. How do I get that? Ultimately, that effort was unsuccessful. And that's when we started going to friends for life. And there, that's where we saw I guess Ed Damiano’s connected solution where there's remote monitoring, and we saw the Dexcom. And that's whenever I thought, hey, if that's an option, and so we started looking into the Dexcom and switched over. Stacey Simms 12:39 I'm gonna jump in because I'm a little confused. When you said you said Damiano’s connected set up, I thought that he was showing off what is now called the iLet and the new the bio hormonal insulin pump. What was the Dexcom component to that that you hadn't seen before? Kevin Lee 12:54 So it was just a simple remote monitoring, you know, he needed to be able to as part His research to be able to remotely monitor the patients that were well, Melissa Lee 13:05 specifically, he had an early version of the bionic pancreas had a Dexcom that was cabled to a phone. Oh, and so if you look back at like, 2012 And so like he I remember Kevin holding the setup in his hand and looking at it and being like, you know, this is fascinating. Like, I have an idea. Stacey Simms 13:30 Because at the time and I'll find a picture of it, but it was cable to a phone. And there were at least two insects from the pump. So you had to have the the CGM inset and then you had to have two pumping sets and then the phone cable for the bionic pancreas at that time. Am I thinking of the right picture? Kevin Lee 13:45 No, I really should see all of that. Melissa Lee 13:49 You know, like we're so old at this point. Like, like eight years ago now I wasn't realizing because how have my children are but this You know, I want to say that this was even before we'd have to go back and back with them. Kevin Lee 14:05 Yeah. And that was just the moment that hey, okay, this is another alternative. And we were, we were actually looking to switch at the time because I think that's when the note and I switched. Melissa Lee 14:17 Okay, we had to switch because navigator went off the market in 2011. So this is right around the time, we just switch to that. Unknown Speaker 14:24 So what did you do with the Dexcom , Kevin Lee 14:26 whenever we noticed that there was a little port that was also used for, for charging and for data, I connected to it and started reverse engineering it sending data and seeing what we got back and trying to get that data off. It was first connected to my little Mac MacBook Pro. And I just had a goal over Thanksgiving to be able to get that data out of the CGM. And it took three or four days and I was able to get basic data out of the system. In premiere, it was just as simple as uploading it, and then visualizing it. Stacey Simms 15:06 So for perspective, and I want to be careful here because I know there were a lot of people working on a lot of different things. I'll be honest with you. I'm not looking for who was first or when did that happen? Exactly. But just for perspective, is this basically the same thing that we then saw, like john Costik, put up on Twitter when he said he got it like on the laptop? Or, like, what would we have seen if we had been sitting in your house that day? Right back to Kevin and Melissa, but first, you know, it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One drop is just that it is the sleekest looking and most modern meter I family's ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime. Instantly share blood glucose reports with your healthcare team. It also works With your Dexcom Fitbit or your Apple Watch, and not to mention, they have that awesome test strip subscription plan, pick as many test strips as you need, and they'll deliver them to your door. One drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the one drop logo. Now back to Kevin answering my question about what does it look like when he figured out how to reverse engineering the free the Dexcom data. Kevin Lee 16:30 Absolutely that we would you would have seen a little text flying by saying this is the the glucose number. Yeah, on the on the computer. It wouldn't have been very exciting to most. And from there, Melissa tweeted out saying hey, we have the data available from our Mac and I guess that's where Joyce Lee picked up on it and wanted some more information. Stacey Simms 16:55 All right. So Melissa, take it from there. Melissa Lee 16:56 Yeah, you know, Joyce has been a real champion as those early days. Why date and so I remember her reaching out to me and saying this is this is really interesting. I want to know more. And in this was the same year that Dana and Scott were bringing their thing to life with what was then DIY APS. This is around the same time, same era in history that, that john Costik was doing his great stuff and with Lane Desborough and the early days of Nightscout, so all of these things were happening in these little pockets, and we were just another little pocket at the time. One of the things that concerned us was whether we were doing something that was going to be shut down really quickly, like there's something that you find knowingly or unknowingly, it's kind of like when you agree to the terms on iTunes. So when you use these devices, there's something called an EULA and End User License Agreement. And these eu la say, you're not going to reverse engineer this product. And so we were a little cautious about what we wanted to diseminate in terms of like your take this and run with it, but that culture was still developing. And so at the end of that year was the big d-data event at the diabetes mine summit, where there were a few really key DIY influencers sort of in the room. This is where Lane first coined the we are not waiting and, and the next day I was at that summit, and I was hearing Howard Look speak about what had happened at the d-data summit the day before. And I was like, Oh, my God, Kevin has to plug into this. So we want to help this...
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"Don't Judge Yourself, Everything You're Feeling is Normal" - Managing Stress With T1D
06/07/2020
"Don't Judge Yourself, Everything You're Feeling is Normal" - Managing Stress With T1D
If you're feeling extraordinary stress because of events in the news, you're not alone. This week, Stacey talks to Dr. Mark Heyman about simple things people with diabetes can do to manage better (and give themselves a break). Dr. Heyman is a diabetes psychologist and the Founder and He was diagnosed with type 1 while in college. In Tell Me Something Good – parents going an extra mile to make their kids feel included and a big challenge ends but we'll talk about "T1D 24/7" This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. More information on mental health and diabetes: ----- ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:17 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:22 This week, let's talk about stress. And let's talk about the not so great effect it can have on diabetes. Now you're in a cycle of not just physical issues, but emotional ones, including guilt. Mark Heyman 0:35 The guilt comes from I think a lot of times people feeling different or still don't. They're all alone, and that everybody else with diabetes is doing great. And I'm the one who is having trouble. Stacey Simms 0:46 Dr. Mark Kaman is a diabetes psychologist and founder of director of the Center for diabetes and mental health he was diagnosed with type one in college, we're going to talk about some simple things we can try to do to manage the stress that these days Seems to be unrelenting in Tell me something good parents going an extra mile to make their kids feel included and a big challenge ends This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I’m your host, Stacey Simms, really glad to have you along. If you are new, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned to he is now 15. I don't have diabetes, but I have a background in broadcasting and local radio and television news and that is how you get the podcast. This is not the show that I thought I would be doing this week like many podcasters I have an editorial calendar I don't always stick to it, obviously. But I have things planned out and I have interviews that are you know in the can waiting to be aired, but I thought this was a really good Subject to talk about right now. Because as I just said, I don't live with diabetes, but boy, we are all living with stress. And I thought, what are some things we can do to figure out how to better live with diabetes or with you know, whatever your health issues might be, everybody has something, I have my own autoimmune disease, how can we just take care of ourselves in a time where this news, as I said, just seems to be unrelenting? So I put in post in a Facebook group Diabetes Connections of the group, which I hope you're in, by the way, if you're not, please join it. You know, I was really worried about her everybody was holding up. And so we talked about self care. And we had a really nice thread of comments. Of course, that's still there in the group. If you haven't seen it yet, take a look at your own, maybe get some advice from it. But I also I decided to call in the experts, and I very much appreciate Dr. Heyman jumping on with me. We hadn't talked before. He was more than willing, and I'm sure we'll have him back on again, and I'll get to his interview in just a minute. But first Diabetes Connections is brought to you by One Drop and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, it's compact, it 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 is Dr. Mark Heyman. He is a diabetes psychologist and a CDE and the founder and director of the Center for diabetes and mental health Mark was diagnosed in college right before I mean immediately to weeks before he had a long planned trip to Paris, and he talks about that we get to that at the end of the interview, and I asked him a little bit about his diagnosis story. But I wanted to talk to mark about how we can handle the mental load that has just been relentless all of this year, I'll come back at the end of the interview and just tell you a little bit more about how I've been handling things I've done some things I think are good. And some things I know haven't really been helping, but we'll talk about that after the interview. Here's my talk with Dr. Mark Heyman. Dr. Heyman, thank you so much for joining me. I'm so eager to hear what you have to say. And I know you're busy. So thanks for jumping on. Mark Heyman 4:37 Thanks for having me, Stacey. Appreciate it. How are you doing? Stacey Simms 4:41 I know, that probably wasn't the first question you expected as the psychologist but, you know, Mark Heyman 4:45 how are you doing these days? You know, I'm hanging in there. It's you know, I think that it's a strange time to be a psychologist as well as to just be someone living in this world. You know, we're, you know, we're all kind of trying to process the news on a daily basis. And, you know, I have A 16 month old middle daughter, so trying to take care of her and juggle my work and childcare and kind of all of the stress there. So I think overall, I'm doing pretty well, but definitely am feeling the stress and stress of what's going on with COVID. And with the rise and with the the unrest that's happening right now. So thank you for asking, Stacey Simms 5:20 Oh, my goodness. Well, it is, as you say, it's such an extraordinary time. And there's really no words left anymore. It's such a cliche, right? We all get those emails in these challenging times in these extraordinary times. But as you said, we've had this COVID situation for months now. It's sort of built on low boil, and I think we kind of learned to live with it in the background. And then of course, the events of this past week. Protests, riots, questioning a lot of people, even if they're not physically doing things and leaving the house, trying to figure out, you know, where do I stand? What do I want to say? We're all on high alert. Where are you telling people that you're speaking to to, to kind of I don't want to say Step back, necessarily, but maybe break it off into smaller bites, what do we do? Mark Heyman 6:05 Yeah, I think there's a couple of things that we can do. The first is recognize that everything that we're feeling right now is normal, that anybody else in that same situation would be feeling would be feeling unsettled and unrest, feeling stressed about, you know, what's going on in the world right now. I think oftentimes, we have these situations where we feel we're feeling something and we feel guilty for feeling it, I shouldn't feel stressed, I shouldn't feel I shouldn't feel x. And I think that taking a step back and recognizing that, you know, these feelings are really normal. The next thing is really to talk to other people and to be able to vent to have some have a sounding board table to get your feelings out. Because that doesn't necessarily make the feelings go away, doesn't make them better. But certainly to be able to share about other people and get get affirmation and get validation for those feelings, is a super helpful thing that we can do as a way of processing And then also taking a step back. And, you know, recognizing that Yeah, the world is in a in a tough spot right now. But also, we don't have to over engage with what's happening. We have we taking a step back and taking a break from social media sometimes just that taking a break from the news can be a really helpful thing to give yourself some perspective. So that when you dive back in and learn about what's what's going on in your car, take start thinking about what you might be able to do to help the situation. You can see that from a fresh perspective. Stacey Simms 7:33 Yeah, I think especially in a time right now we are we are being challenged to pay attention. And you know, and I can only come to this through the lens of what I have, which is a white suburban mom, right? You know, we're being challenged, pay attention. You know, learn, speak up, let other people know what you're thinking. But that doesn't mean be on twitter. 24 seven, that doesn't mean you have to watch all of the news is that what I'm kind of hearing you say Mark Heyman 8:01 Yeah, I think that one thing that we think is that if we that we want to be in control, not necessarily of the situation, but certainly be in control of our feelings and be in control of our, our environment. And I think that one one thing that one way that people try to get control over those things, is they do something called over engage, they engage with the news, and they end they get involved with it, because they feel like the more that they know that and the more that they see the the ever changing landscape, the more control they'll have. And I think that that's a it's a certainly a valid point. But there's also some of the downside to that. Because Because as you're following Twitter, you know, constantly, it's stressful, and you're constantly looking for the changes, and that's stressful. And the reality is, is that on a minute by minute basis, nothing's changed. Nothing's changed in a sense that is going to really probably change what you do or how you react and so yeah, take take a step back and and recognize But over an aging doesn't actually help with your stress and sometimes they can actually make your stress worse and you know, increase it as well. Stacey Simms 9:11 All right, let's bring diabetes into this because that's really you know, this is all about here on Diabetes Connections. And I don't live with diabetes, but I am I'll be honest I'm worried maybe it's a mom thing and I see the people in my Facebook group and I'm we're part of this larger community you live with type one. I mean, stress is bad for anybody but on top of type one diabetes. I'm gonna sound like a hypocrite because I was talking to this with my husband last night and he was pointed out I live with an autoimmune condition. I have ulcerative colitis laughing at me like why are you worried about diabetes you have to take care of yourself to which I really not, I'm not eating great. I'm not exercising like I normally do. So again, bringing back the focus to diabetes, but I guess any chronic condition you live with type one. Are you feeling more stressed? On top of diabetes Mark Heyman 10:02 Yeah, I definitely am. I'm definitely feeling more stressed because I mean for lots of reasons one is that you know, I you know, I'm a stress eater so when you know when I when I'm stressed out and when I'm around food like that's that's one of my coping mechanisms for better or for worse and so that doesn't do great things for my blood sugar's also just stress in general is definitely impacting my blood sugar's but I'm seeing you know a lot more variations than I had before as well as sleep certainly my sleep isn't great because of the stress right now and when when out sleep while my blood sugar's definitely are hot running higher which makes me not feel great but also makes me more frustrated. So you know I'm a I work with people with diabetes and help them manage their stress. I certainly have a lot of those same stresses and so it can be a challenging a challenging thing to balance. One thing that I've done to really, really kind of helped myself is a couple of things one I had been really intentional about exercising. Luckily, I have a little bit of flexibility in my schedule and so I'm able to exercise on most days and I find that starting my day off that exercising helps my blood sugar's and also helps my stress. Also just cutting myself some slack and being kind to myself around my blood sugar's recognizing that, you know, I'm doing everything that I can to manage them the best that I can. And sometimes they're not gonna cooperate. And that's true anytime, but especially to when we're in a time of stress, where with all these other variables going on, just, you know, being kind yourself and giving yourself some grace and some slack can be really helpful and recognizing the time will pass. And that that will that may be a time where we can be much more intentional about our diabetes management, but also, it'll be smoother sailing, hopefully, because the stress won't be a compounding variable there. Stacey Simms 11:53 Well, and that's such a great point because I was going to ask you and you pretty much answered it, but you know, when when someone With with tight diabetes control or someone who really is trying to manage Well, you know, if they have a very stressful time like this and their management, I'm gonna put this in air quotes, you know, slip. So you're seeing higher numbers or more variation. And then I think a lot of people have have guilt on top of as well. How do you deal with the guilt and not blame yourself? You mentioned trying to like dial back and see the bigger picture, it's not gonna last forever. Is that one of the things you'd recommend? Mark Heyman 12:29 Yeah, I also think that, you know, connect with the community, whether that's on Facebook or Twitter or Instagram or in real life you can and recognizing that everybody else is going through the same thing and everybody else is having, you know, more erratic blood sugars right now. It's really valuable because the guilt comes from I think a lot of times people feeling different or feeling like they're all alone, and that everybody else with diabetes is doing great. And I'm the one who is having trouble and that's why I try to be really Open about you know, the challenges that I have with my blood sugar's like with like with my patients off kind of take out my phone and show them my CGM graph and show them that my blood sugar's are nowhere near perfect, because it makes them feel like you know, it takes some of that thing of that guilt away of recognizing that Yeah, I can certainly make better choices sometimes. But diabetes has a mind of its own and being okay with riding those waves is is critical for our mental health. Because if your only metric of success is keeping your blood sugar between those lines, and yet the only way you can not have stress in your in your diabetes life is by having perfect blood sugar's you're setting yourself up for failure. So we need to have a different way of looking at it. Stacey Simms 13:45 Every once in a while mark, I'm just I'm stopped. I I can't even imagine what it is like to to live with type one just so much that you have to do and I have somebody you know, I have my kid in my house that I've we've accepted for 13 and a half years and everyone's While I keep thinking, gosh, it is really such a burden. But that's neither here nor there. You know, but just to hear you put it like that. I'll probably take all of that out. Mark Heyman 14:08 But the way, let me say something there is, I actually try, I actually encourage people not to use that word Burg, because it kind of becomes a self fulfilling prophecy. You say diabetes is hard. It's such a burden. And you're right, I'm not gonna argue with you there. But then you, but then we won't talk about how big of a burden it is. It kind of gets it makes it it snowballs and grows and becomes bigger. And I think that when we say, you know, we have all of these things going on, we have diabetes, and COVID, and the George Floyd and all of all of these confounding things. And we say in diabetes becomes even bigger, a bigger burden. It's almost like this expectation that it should be, and sometimes it is, sometimes it's not, but we don't want to have people get to a point where they say, Well, I had diabetes and therefore this automatically means that you know, You want to I always give people the space to be able to, you know, see whether it's a burden or not, but not automatically assume that's going to be. Stacey Simms 15:08 I love that. And I'm always working on being better at language. And I really appreciate that. You know, it's, it's, it's one of these things where, you know, you want to help and every once in a while, you know, you really, I slip on that, so I appreciate it. Um, but, but Okay, so but let's keep going on that right. Okay, so I'm a caregiver, I guess a little bit less so because my son is 15. And it's like when he was two when I was doing everything with him. Any advice for me, in addition to not standing around saying this must be such a burden for you? How can I upload, right? I mean, which he's doing great. He's got his own way to manage stress. We're talking a lot. He does exercise quite a bit, which has been really helpful. He's connected with friends, but as a parent or caregiver or spouse, any advice for us so that we're not putting more stress And the person we're trying to help. Mark Heyman 16:02 Yeah, I think I think take a step back and recognize that you know, that he has it, he's got this taken care of and that you're certainly there to help him in whatever way that you can. But from what you're telling me, it sounds like he's doing really well, doing really well without responsibility. And so, and you know, when you're in, but certainly kind of the same thing about, you know, over engaging on Twitter around the protests right now. I think that over engaging with your son around diabetes, especially when there's not a whole lot you can do right now. I mean, because you're doing really well. That's add stress to you. And so if you're able to kind of take a step back, take a step back and not over engage with it doesn't aggravate him, but also gives you some space to recognize and also gives you space to recognize that but also see that he's doing well and give you the confidence that you need to continue to get that debt back because as she grows up and it goes to college Sunday Jimmy great scope for you to have. Stacey Simms 17:02 We're working on it. Mark Heyman 17:05 It's a never ending process. Stacey Simms 17:08 That's great advice. Um, what are some small changes that you might encourage people living with diabetes in these crazy times to do? Mark Heyman 17:18 Yeah, so a couple of things that I would recommend, I mean, just like just a simple tip is, you know, one of the things that is that people have really struggled with, that I've been talking to, over the past three months when we've been in quarantine is kind of the routine has been pulled out from under them, so they don't have to go into work anymore, they may not be able to go to their favorite restaurant or go to the gym. And so and diabetes...
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"I Tell Them I'm a Cyborg" - Talking To My 15-Year-Old Son About Type 1 Diabetes
05/26/2020
"I Tell Them I'm a Cyborg" - Talking To My 15-Year-Old Son About Type 1 Diabetes
In-depth with a teenager who lives with type 1. Stacey interviews her son Benny, who was diagnosed just before he turned two. They talk about Control IQ, explaining what diabetes is to people who don't know and what he does these days for sports and other activities. Benny answers listener questions and looks back on 13 years of T1D. In TMSG – graduation good news, two popular diabetes books get an update and more This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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 Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms Stacey Simms 0:26 this week in depth with a teenager who lives with type one, okay, it's my son Benny. We covered a lot of ground here answering your questions including sports, what he tell his teammates when they travel for sports and stay overnight. Benny 0:41 I tell them that nasal spray thing - Baqsimi if I don't wake up or if I pass out, do that and then go get coach. Stacey Simms 0:47 We talked about feeling self conscious about diabetes gear, what he remembers about being a little kid with type one and his feelings about the new Control IQ system. I think this interview was a good idea? Tell me something good graduation news two popular diabetes books get updates and more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you along we aim to educate and inspire about type 1 diabetes by sharing stories of connection. If you are new Welcome, my name is Stacey Simms. I am your host, my son Benny, who you will hear this week was diagnosed right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have diabetes at all. But I have a background in broadcasting and local radio and television and that is how you get the podcast. Before we get to Benny and oh my goodness. Like I've already said I'm hoping this was a good idea. I think he has good information to share. It's a little odd to interview your own son. But before we get to him, I have some great news of my own to share the world. First diabetes mom, my book that's been out for a couple of weeks now won an award, my publisher sent me an email. And by now I've probably shared it over social media, as you're listening to this spark publications announces that the world's worst diabetes mom has won an award of distinction as part of the 2020 communicator awards. This is part of the Academy of Interactive and visual arts. I'm really excited about this. Of course, it's not just about the writing, but about the design of the book. And we work really carefully on that the cover alone, we went back and forth quite a bit, but then inside to make it really easy to read. And a nice experience. I mean, oh, my goodness, I was who knew so much went into things like this. I mean, when you think about it for more than a minute you get it. But Wow. If you've ever been involved in any kind of book publishing, there's a lot of steps to it. So it's very exciting to see all of our hard work rewarded with this award. So thanks for indulging me and letting me talk about it a little bit. The book has really been an incredible excuse. For me, and I hope if you've read it, you've enjoyed it. I hope if you haven't read it, you'll consider giving it a chance. You can always learn more, of course at the website Diabetes connections.com. But the book is for sale on Amazon paperback ebook, you know, Kindle and audiobook which I married. And if you're listening to this episode as it first airs on Tuesday, the 26th of May, then tomorrow night I'm actually doing a world worse diabetes mom event with jdrf a couple of the southeast chapters got together we're doing a zoom presentation all about it, sharing our mistakes and mishaps what we learned from them and why they're just the best way to go right? You got to make all the mistakes when it comes to diabetes or parenting in general. And I'll put more information about that in the Facebook group and on social media. I'd love to have you join us. All right, my conversation with Benny in just a moment but first Diabetes Connections is brought to you by One Drop. Getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance about 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 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 prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop leaves 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 was pretty easy to book because I know his schedule. He lives in my house. He is my 15 year old son. And if you've listened to the show for a long time, you know I really try to balance how much I share about Benny's experience with type one. It's a balance of, you know not oversharing to compromise his privacy, but also sharing them To help people, he's always been a really good sport about it. And we've really weighed and measured over his entire life because he was diagnosed at 23 months, how much to talk about him. I mean, even really before that, because I was on the radio when he was born. I mean, both of my kids, I was a local TV reporter when I was pregnant with Lea, my daughter, and I was in radio, I was at WBT where I worked for a decade doing the morning show there. I think I was there for a year before I got pregnant with Benny. And so my listeners went through that process with me. You know, they saw me out at events and it was a whole big deal about, you know, how much are we going to talk about how much are we going to share, and when he was diagnosed with type one, and my listeners wanted to learn more, we had to go through it all over again. So I err on the side of sharing less, which may strike you as bananas because I just talked to my book where we talk about all our stories and our family stuff. But I really do I mean, if you look at a lot of the mom bloggers out there, and especially the Instagram people, you know, I really don't share our day to day. I don't think that's fair to him. I'm saying all this I'm sorry for the big lead up. Because it's hard for me to interview Benny, it's hard for me to kind of push and probe for more. He's funny, as always, he gives great information, I think, of course, he is 15 years old. A couple of quick notes to that. 15 years old, and really goofing around on the microphone. There's probably more editing than usual in this episode. So please forgive us if parts of it sound a little choppy, although I'm sure my editor john, you can smooth most of that out. But really, there were times where I really I just, we were goofing around so much, I had to cut it out. And there's a little bit at the end to give you a taste of that. And I mean, the very end of the show, I included it's not really a blooper, but it's just oh my god, what he was doing with the microphone. Also, he does say this is the only correction I'll make. We talked about Control IQ and he says he's in range 80% of the time. I wish. It's still excellent. It's closer to 70% of the time, which is wonderful and it's certainly a lot less work. We talk about that a little bit too. But I have to correct that he is not in range 80% of the time. And the only other thing is listening back to this. I don't want anybody to misunderstand. We are mean to each other. I mean, I call him a couple of mean names. It's just our relationship. I mean, it's kind of the way we pick on each other. If you don't know us, too well, I'm just a little worried that you might think we're really mean to each other. I think you can hear that. It's all in good fun. We are so fortunate to have a great relationship. But it's been a while since I had him on the show. And you all had a bunch of questions for him. So I asked, he answered. Here's my conversation with Benny. Stacey So how are you holding up? I'm good. All right. Well, we got lots of questions for you. From listeners and the Facebook group, you started on Control IQ at the end of January. And we were well past three months now. Use any perspective Any comments? What do you think Vinnie? You'd Benny 7:55 No, it's much better than it was before cuz I'm in range. Like 80% of the day? Unknown Speaker 8:02 Yeah, it's wild. What have you noticed in terms of me? Benny 8:06 I'm curious if you're much more now you like, Is it working? Is it working? Is it working? No, I'm not. Stacey Simms 8:15 Any tips or tricks? You don't bolus when you're on the higher side, right? Because we found that that kind of Benny 8:21 plummets you. Yeah. Don't do to see but in Control IQ, it won't bring you up from lows. Stacey Simms 8:27 But you still do to receive and Control IQ Benny 8:29 because I like juice. Stacey Simms 8:31 Cuz you like juice? Yeah. You're an idiot. What? Alright, so you use Control IQ, and you still take a daily shot after Seba, even though your insulin needs have gone way down. Why do you continue doing that your Seba? Benny 8:47 I don't know. Stacey Simms 8:48 Well, you know your mother mentioned you might want to stop and you said no, I thought you had a reason less insulin usage. You mean like in the pump, you don't use the cartridge. You should try it. You're not really using balance. Well, now we have to talk to the endo again and okay. Would you think of the telehealth visit that we did by the way? That was rough. Benny 9:08 It was rough about it. You guys couldn't find any. Oh, yeah, we had probably his first one. Stacey Simms 9:14 And he didn't have clarity and he didn't have to connect up even though the office said that they did. So it was a little weird, but were you okay with just talking to him that way? Well, yeah, I mean, Benny 9:22 it's better in person. Because that our interests are pretty cool guy. Let's get to the questions Stacey Simms 9:29 in the Facebook group, Rodney Miller. Hi, Rodney, who runs bolus and barbells he said Why am I Benny's favorite? strong man diabetic. Benny 9:38 My favorite strong man diabetic actually for your information? Cuz I'm the best Oh, you're those favorite strong man. Oh, all right. Well, we'll see you guys in competition. Maybe I can guide when armwrestling contest. I don't know man. my biceps are massive friends for Stacey Simms 9:52 life. 2021 showdown. Rod me and Betty. Okay. Ronnie says does he feel does Betty feel like having Such a strong advocate for a mom has provided him unique opportunities to connect to the diabetic community. Benny 10:06 Yes, would have never met Rodney. Ernie almost got the chance to meet the rock was very close to that. Brick bassinger those people are pretty cool friends for life is a lot of fun. Justin Thomas, Jeffrey, those guys are pretty cool, too. I don't think I would have really met them without mom. You know, no one's putting us in trials. So you know, is that Stacey Simms 10:30 isn't that funny that we can't get you into a clinical trial? Benny 10:33 I think they it's obvious that they know we're just too cool. They don't they don't want to risk something not working on people that are just so awesome. Stacey Simms 10:41 But we'll keep trying. All right. Shelby wanted to know, when you were younger, what did you say when other kids asked about your pump or CGM? How did you handle the curiosity of other kids Benny 10:52 said I'm a robot. I still say I'm a robot and then I actually explained it. I remember one time a gorgeous went What's this and ripped up my pump? Wow, that was Fine. I don't really remember anything. Besides that. Stacey Simms 11:02 I remember when you were, and this might be the same story when you were in preschool. They told me that you were all kind of like lining up to go to the bathroom or something. And the kid behind you said, Hey, what's that and started to pull on it, and you turned around, and you were like, three? And you're like, that's my diabetes. And you were very straightforward. Like, don't mess around with that. Don't touch that. That's mine. Or I guess, like, touch my diabetes. You're like, but you were always we're very lucky because you were always very straightforward about it very open about it. And you never have seemed to minded Benny 11:36 Well, yeah, no, I don't care. Like if you don't like me, because I have diabetes go away. You suck by God, what am I gonna say? Like, Oh, no, darn. Stacey Simms 11:45 Well, you know, you're not self conscious about it, which I think is, is wonderful and made it easier for us. But I don't know how you teach that to somebody, right? You just have always been that way. Benny 11:55 I just kind of like I need it. Don't touch it. Stacey Simms 11:58 So I guess the answer is you've been very straightforward about it little humor, but mostly not hiding it and saying here it is. Benny 12:03 Sometimes I trick my friends into thinking they're giving me insulin, I disconnect my pump and I give them the pump and they still think it's connecting. They go, can I kill you? I say yes. And then I let them give me like six units, and they think that I'm gonna die. And it's really funny. Why would you tell me that? Because it's funny. Stacey Simms 12:20 Why that is terrible that your pumps all messed up, especially with Control IQ. We think I don't Benny 12:25 do that much anymore. Okay. So like, once, once, once every other month. This is more like a fifth grade thing. Yeah. Please tell me you don't do that anymore. I do it like once. Maybe I did it once with Jackson. Stacey Simms 12:37 I'm gonna kill you. Okay. Let's see. Dee writes as a teen athlete. What are your best tips to manage on your own during a sports event or overnight sports trips. We have a lot of those this year. Benny 12:49 We have but I wasn't Stacey Simms 12:50 competing. I know which is why I wasn't which is why it was very easy for me Benny 12:55 to let you go. I don't think it's very smart to be on your own with anything. ports, you should have at least one person with you that knows what's going on. Just you know, just in case but like, if you are alone, which is again, not smart, Stacey Simms 13:08 she means on your own without your mom or dad, because you're on a trip is not going to be like the coach is going to be there. The team is going to be there. So why don't you talk a little bit about what you told the kids when Benny 13:18 I first joined the team coach made us all sit down and made me tell everyone what was up. Basically all I told them was I have diabetes. It sucks. If I faint there's a thing in the in the pouch that you stick up my nose or you go to coach or the athletic trainer. Don't let me die. Stacey Simms 13:39 Well and when you go on overnights you're not alone in the room, but there's not an adult anymore. Yeah. So what do you tell the kids that are with you? Benny 13:48 I tell them the thing like the the nasal spray thing. So like see me if I don't wake up or if I pass out, do that and then go get coach. Stacey Simms 13:57 What do they say? Are they like okay, yeah, they don't Nobody seems freaked out in there. Benny 14:02 I mean, a bunch of them are scared of needles and it's fun to mess around with them but Stacey Simms 14:07 and I do send you you know you have a kit, we make sure that there's lots of food and drinks and all that stuff. And you have your snacks and your your Welch's fruit snacks. That's one thing that made it easier in a way last year you weren't competing because you had your knee injury. So I wasn't too worried about the ups and downs this coming year, assuming all goes well and you wrestle again. I'm not exactly sure what I'm going to do for those first couple of overnights. Well, you said it like I was gonna ask you what to do. I'm not I'm either going to come near and stay nearby. Oh, no, dad, Benny 14:43 if anyone's coming is that Stacey Simms 14:44 that's a great idea your father can go. I don't think I would like I'm not gonna make you stay in the hotel room with me. You can still say with your friends, but especially with wrestling until we kind of figure out what your body's doing. I think it's really important to get a baseline and then get some protocols and figured out out from there, but I don't I don't intend to sit on You don't worry. I like this one. Kristen says, Is it true that Benny has the best mom ever? Benny 15:08 No. Oh, you're off the show. No one has the best mom ever. It's literally not possible. There's like a couple billion moms. You know, Mother's Day is just passed. Stacey Simms 15:20 But that was a missed opportunity, my friend. Unknown Speaker 15:22 Um, Benny 15:26 I mean, she's pretty good, but not the best missed opportunity. Stacey Simms 15:31 Best you ever had. Okay. Right back to our conversation. And the next question is going to be advice. What would Benny tell his younger self? We'll get to that in just a minute. First, diabetes Connections is brought to you by Real Good Foods. And on their website. They have real reviews from real people, which makes sense because you know, this is all about real food. You feel real good about eating. And what's nice is with the record As you can see, it's not just people who eat super low carb or who eat keto. There are people who have celiac who can't eat grain. There are people who just love the way the food tastes right? There are people who talk about the airfryer, which is a great way to make so much of their food. It is delicious. We are big fans of their they can put this in the airfryer we're big fans of their new ice cream. And we really love the cauliflower crust pizzas as well, which do really well. In the airfryer find out more, just go to Diabetes connections.com and click on the Real Good Foods logo. Now back to my talk with Benny asking him your questions. Mary says what advice would he tell a younger version of himself about being a teenager with diabetes? So I guess she means what would you say to yourself back Benny 16:52 then? Keep doing what you're doing. You'll be fine. Stacey Simms 16:56 I think that's an excellent advice. Benny 16:57 Yeah, I was a pretty good child. Questions like, Oh, I wish I had depression. No, I was the best. Stacey Simms 17:04 I think the only advice that you should give your younger self is, if you...
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Dr. Natalie Strand: Chronic Pain, Type 1 Diabetes & Looking Back at "The Amazing Race"
05/19/2020
Dr. Natalie Strand: Chronic Pain, Type 1 Diabetes & Looking Back at "The Amazing Race"
Dr. Nat Strand is an anesthesiologist who lives with type 1 and a mom of two young children. She just contributed to a paper all about pain management guidelines in this difficult time, when many people can’t see their doctors to face to face. You also may know her as the winner The Amazing Race in 2010. Of course we also talk about having T1D and that crazy travel show! In Tell Me Something Good: virtual events, fire fighters and a lego master This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Have a diabetes product or something to promote to the community? She's looking for sponsors - this program fits just about any budget. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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 Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:25 This week, Dr. Natalie Strand is an anesthesiologist who was diagnosed with type one as a teen. And she says people who live with chronic pain and people who live with diabetes have a lot in common. Dr. Nat Strand 0:39 and we may think the person who lives with it is thinking about all day long with every activity you know before they go to bed when they wake up in the morning, but the people around them even loved ones, you know and household. kind of forget because you look healthy. Stacey Simms 0:53 Dr. Strand just contributed to a paper all about pain management guidelines in this difficult time when many people Can't see their doctors face to face. You may also know her as the winner of The Amazing Race in 2010. Of course, we talked about having type one and that crazy travel Show. I'm a huge fan By the way. In Tell me something good: virtual events, firefighters and a Lego master. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. I know Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. And I am so excited to finally talk to Nat Strand. I can't believe that we haven't crossed paths before. I'm a huge fan of the amazing races. I mentioned I started watching it in 2001 when I was pregnant with my daughter, and I actually remember the commercials when it was like coming soon. And then of course September 11 happened and how are they going to be able to do this they thought the show might not have a second Season. So, gosh, that was such a long time ago. But it is amazing to see that even with COVID-19, which stopped the show again, they're going to be continuing that in the future. But that's neither here nor there. I mean, we're talking to Dr. Strand about pain management her life with type one. And of course, we'll talk about the amazing race as well, but she wanted with her partner and fellow doctor in 2010. So taking a look back, I want to bring you up to date before we get to the interview about something new that I just announced really a couple of days ago on social media, and that is my book to clinic program. Of course, the book is the world's worst diabetes mom. And one of the things that I have found really fascinating is that although I am obviously a lay person who wrote an advice book for parents of kids with Type One Diabetes, I've been really fascinated by two things. One is that adults with type one are buying and reading the book and then giving it to their parents to talk about, you know, their childhood if they were diagnosed as a kid or wants to learn Learn more about the parent perspective, which I thought was fascinating. But I'm also hearing from diabetes educators and endocrinologists who have told me and I know I sound surprised here and this is genuine. I'm not trying to make this silly. They have told me that they have learned things from the book. And you know, when you think about it, it really isn't a surprise, because it's the layperson perspective. These are things you do not learn in medical school, right? These are things you learn when you mess up diabetes, when you're at the beach, you're in the car. It's the middle of the night, you're macgyvering stuff together. This is stuff you've learned when you live with type one. And to that end, a few clinics reached out and said, Can we have copies of the book to give away and so I started a new program, it is called book to clinic. Bottom line, I'm looking for sponsors to pay for these books, so we can get them to people who need them. It's very reasonable. It's a very easy system. I will put more in the show notes and there's a video that's on social media you can see the whole thing and how it works. big thank you to my first two sponsors because the books have already gone to clinic. Thanks to T one d 3d year, and Big thanks to frio so you know I really appreciate the faith that they have shown and if you have a product or a blog or another podcast and you're looking for some very reasonable advertising that is targeted to an audience that is looking for you, please let me know and you can reach out to Stacey at Diabetes connections.com. I’m really excited about it. It's one of those things that you just don't expect to happen. But you know what, we'll see where it goes. Diabetes Connections is brought to you by Real Good Foods, and they have already new ice cream flavors. We love their ice cream and they're kind of hard to get right now. they've they've silted up a couple of flavors. But man they are so yummy. I cannot wait to try the mocha Java chip ice cream. I'm a huge fan of coffee and chocolate and their original flavors that we tried way back when beginning of March. I think we did that Facebook Live where Benny and I tried the ice creams. They were so delicious. We really liked them in chocolate chip, everybody in my household Loved the peanut butter chocolate chip ice cream or big peanut butter people. The new flavor sound amazing. I mentioned the mocha Java chip, the cake better ice cream. My kids love that. And something called super premium almond charcoal ice cream. That sounds amazing. So let me know what you think if you've sampled the new flavors, we haven't been able to try them yet, but I'm really excited and of course Real Good Foods has real good food. They have a whole line of high protein, low carb grain free gluten free. Good for a keto diet if that's your thing. Everything from cauliflower crust pizza to stuffed chicken and breakfast sandwiches, find out more Just go to Diabetes connections.com and click on the Real Good Foods logo. If you've already heard of my guest this week, chances are you're a big fan of The Amazing Race TV show. Dr. Nat Strand won the whole thing in 2010, part of the first all female team to cross the finish line first, along with her friend and race partner, Dr. Cat Chang. Dr. Strand is also the first winner with diabetes and she might really think We'll be the only contestant to compete with type one. I started watching The Amazing Race. As I mentioned when I was pregnant with my daughter and I have been meaning to talk to that for a long time. I'm so thrilled we finally worked it out. She's an anesthesiologist and a pain medicine specialist working at the Mayo Clinic in Scottsdale, Arizona. Recently, she contributed to a paper on caring for patients with pain. During the COVID-19 pandemic. She was diagnosed with type one at age 12. So we have a lot to talk about. Here is my interview with Dr. Nat Strand. Dr. Strand, thank you so much for joining me. I am excited to learn from you and to hear your story. I followed you for years on social media. So thanks for coming on. Dr. Nat Strand 6:42 Oh, well, thank you so much for having me. It's an absolute pleasure, Stacey Simms 6:45 so much to talk about. We will get to the stories and living with diabetes and your diagnosis story. I want to start out and just jump right in with what caught my eye recently, which is a study to what you contributed about caring for Patients with pain during this pandemic. I don't know that you can really share too much about the study. But I'm curious like, you know, your anesthesiologist, let me start with asking you what are you seeing right now? What's going on in your world, Dr. Nat Strand 7:14 where I'm located in Phoenix, Arizona, we are thankfully not experiencing the surge that we thought we were going to have. So four to six weeks ago, there was a lot of work as far as preparing on a community level. All the hospitals governor mandates to increase capacity of hospital beds, things of that nature. So we were certainly preparing for a surge. But I think a lot of people in our community have made personal sacrifices with the social distancing and the stay at home. And I think that that has helped us flatten the curve, as I say, not quite bend the curve because we're still increasing cases here but flattened the curves. Right now. What I do is practice pain medicine, we largely transition to telemedicine to avoid face to face visits and allow patients to access health care. While they stayed safe at home, so predominantly in the last few weeks, I have been treating my patients with telemedicine. Stacey Simms 8:08 And how does that work? Because I would imagine that pain management is already a very delicate balance. You know, we hear about, Oh, you don't want to take too much of this medication or you can get addicted. And then when people are concerned about not seeing their doctor face to face, you've got to be worried about well, are they even managing their pain? Or are they suffering? Can you share a little bit about how it's been going? Unknown Speaker 8:27 You know, I think for the most part, it's been excellent. With two way real time, audio and visual, I think you can get a good sense of how patients are doing. And as far as managing medications, you know, certainly the opioid crisis was there before we call the pandemic that the word crisis is still there during the COVID pandemic. So, you know, it's not the answer isn't just to prescribe a bunch of opioids. Now, some people benefit from it, but a lot of people can do manage with other texts. Consider that the anti inflammatories, neuropathic pain medications, lifestyle alterations, weight loss therapy and even with you know, the social distancing and stay at home, there's a lot of physical therapy that you can do from home too. So I think this challenge in medicine is really forcing our hand taking advantage of telemedicine and taking advantage of remote care and certainly providing access without being face to face now we are now open for elective procedures in Arizona so we are able to keep patients face to face but for a period of time there we really were forced to jump on the telemedicine bandwagon, maybe a little sooner than most of us were prepared to do that. I've been very pleased with the ability to offer access to patients, especially patients who are at higher risk, whether that be due to health concerns or age or even for patients that have to travel long distances to see a physician. So I think easing the burden on those patients and their situations to allow a little bit lower barrier to entry. healthcare access has Stacey Simms 10:01 pardon my ignorance on this question, but when I think of seeing a doctor for pain management, and fortunately, I haven't had to have a lot of that in my life. So again, I'm ignorant on this. I don't think of an anesthesiologist. Right as the person that I would see I think of you all in the operating room. Dr. Nat Strand 10:18 You're not alone. You know, when you do a residency in anesthesiology, you basically spend three years after your internship focusing on ICU level care, operative care, regional anesthesia, select nerve boss, epidural catheters, those kinds of things. So you become an expert at acute pain management, both with medication bandwidth intervention, so there's a fellowship option afterwards. And one of those planners either you can go into ob anesthesia, you can go into cardiac anesthesia, you can go into intensive care, you can also go into interventional pain medicine, so you kind of utilize that and there's a small skill set you developed during the anesthesia residency to further hone that Then focus on mega spinal injections, radiofrequency ablation of the spine or large joints, implantation of spinal cord stimulators or implantable pain pumps. So, you know, it doesn't seem like a natural progression at first glance, definitely. But when we kind of think about what we do in the bar and how that can translate to an office setting for chronic pain patients who kind of come to the bridge to the specialty, Stacey Simms 11:27 yeah, yeah, of course, that makes sense. So tell me about this study. Because this is all about caring for patients with pain during the pandemic, not necessarily patients with COVID-19. This is something that is more of a guide for physicians, Dr. Nat Strand 11:42 who's our recommendation, we worked with the American Society of we China presenting medicine to put out recommendations and then we also the paper you're referencing with that International Paper with the European society, of regional anesthesia also, and we just kind of want a different side provides some guidance during this pandemic early on, know how to handle urgent procedures, semi urgent procedures, you know, what was the risk of using steroids? You know, what can we do to manage our patients that were on chronic opioid therapy. So they really was sort of a set of guidelines after discussion of a panel of international pain medicine experts. Stacey Simms 12:22 It does seem that chronic pain as I read through a little bit of the study, you know, just the introduction, things like that. It seems like chronic pain is so debilitating, especially for older people. I know we're a diabetes podcast, we're going to talk about diabetes in just a moment. Unknown Speaker 12:37 But is there Stacey Simms 12:38 you know, any advice that you would give someone who is suffering who feels like I don't think there's something for me? I've had this pain for so long. I'm afraid of being addicted. You know, we hear all those stories. Any reassurance? Dr. Nat Strand 12:48 Absolutely. And one thing I want to say, You reminded me we talked about the food diary podcast. I think we're a lot of similarities between living with chronic pain and dealing with diabetes. I mean, they're totally different disease states. But if you talk about an invisible disease, that the person who lives with it is thinking about all day long with every activity, you know, before they go to bed when they wake up in the morning, but the people around them even loved ones, you know, a thing household, kind of forget because you look healthy or you look okay, you know, so yeah, that experience of living with diabetes is very similar to the experience of living with chronic pain. Stacey Simms 13:27 That's really interesting, especially and even to my question of people are almost afraid to speak out because they're afraid they won't be taken seriously, or they'll be blamed. I didn't even think about that. Dr. Nat Strand 13:38 Yeah, I mean, and, you know, you don't want to be a complainer or you want to put on a happy face. You feel like it's not interesting to other people, because it's the same thing it was yesterday and so, you know, I think living with diabetes myself, I bring a lot of that to counseling people who live with chronic pain because I get it, you know, and a lot of times they feel really, you can tell they can feel like, Oh my God, that's the first time anybody's really related to me on that way, you know more than just diagnosing the underlying cause of their pain, but actually, what it means to them to live with a condition like that. So I think that actually me having my experience of living with diabetes helps me relate to patients who live with chronic pain. Stacey Simms 14:16 So let's talk about type one. Let's talk about your experiences. You were diagnosed as a young teenager, really, pre teenage 12 to remember your diagnosis story. Right back in just a moment and telling your story there, 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 how much they get diabetes. It really does make sense their CEO, Jeff was diagnosed with type one as an adult. In fact, I just talked to him last week about something else. It's always so good to talk to him because he gets it. He knows what this is like. Right? One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly. To remove all barriers between you and the care you need get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo. Now back to Nat and I had asked her if she remembered her diagnosis story. Dr. Nat Strand 15:34 Do I remember that summer being really annoying and my family's road trips I remember going up to Northern Arizona and having to stop use the restroom all the time and it's a short like two hour drive. So I do remember my parents saying we'll stop drinking so much. You know of course now we know that the opposite. And then I went to like a three day sleepaway camp and at camp I was getting some notoriety for how many cans of soda I was drinking, I was going to the vending machine. And I was drinking so much that point I'd like built a pyramid of all the cans. I think, obviously I was going into either some decay or you know, just hypoglycemic diarrhea. So, I came home, my dad is a radiologist, he started to suspect that I might have diabetes. And I think he brought home some like urine ketone strips or something and tested them. And I remember it was like black. So he actually took me into the hospital. And I remember him telling me I was going to the hospital. And I had this bag of gummy bears in my room. And I vividly remember looking at those gummy bears. And you know, in a typical kid, that was what I was sad about was like, Oh, I'm not going to believe me. There's I had no idea what the rest of the diagnosis meant. But at that time, you know, you were admitted. I think I stayed in the hospital for 10 or 12 days and learned how to give myself injections and carb counts and there you have it. That was kind of my guide. It was truly not traumatic in a way. I mean, I didn't have some big bad events that veiled the diagnosis. It was kind of suspicion. Then that was the summer before I went into middle school. So I got to carry a purse everywhere. So the diabetes supplies I thought that was pretty cool. Stacey Simms 17:17 Did you know you wanted to go into a medical field when you were that age? Dr. Nat Strand 17:20 No, I don't think so. I had dreams of being like an oceanographer or a National Geographic photographer, kind of more creative, worldly, growing, no...
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"Stargirl" actor Brec Bassinger Talks Type 1 Diabetes and More
05/12/2020
"Stargirl" actor Brec Bassinger Talks Type 1 Diabetes and More
There's a new superhero coming to the popular CW network lineup. Stargirl features actor Brec Bassinger, who lives with type 1 diabetes. We first spoke to Brec a couple of years ago, just after her run on Nickelodeon's "Bella and the Bulldogs." She shares what’s changed with her diabetes management since then, advice about speaking up for what she needs without feeling weird about diabetes & much more. It's an athletic edition of Tell Me Something Good with marathons! Hiking! And that feeling when you do something your middle school coach told you you’d never do because of diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 This week, there's a new superhero coming to the popular CW network lineup. Stargirl features actor Brec Bassingerwho lives with type one. After they started production, she found out another person in the cast and on her superhero team also lives with T1D. Brec Bassinger 0:44 I think it's more of having that companionship, that person who understands when we're on the 17th hour of work and they bring out another snack that just as carby but we're hungry and sleepy but we don't want to eat all these carbs and just being able to look at like okay, you get it, and talk to each other and understand that was just so nice to have. Stacey Simms 1:02 She'll share more about what it meant to have that actor Cameron Gellman on the set with her. We first spoke to Brec a couple of years ago after her run on Nickelodeon, in Bella and the Bulldogs. She talks about what's changed with her diabetes management advice about speaking up for what she needs without feeling weird about diabetes, and a lot more and athletic addition of telling me something good this week, marathons hiking, and that feeling when you do something your middle school coach told you, you never do because of diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I have a feeling that this interview is gonna bring a lot of new people into the show. So just a quick word. I'm your host, Stacey Simms. My son was diagnosed with type one right before he turned two He is now 15 years old. He's had diabetes for more than 13 years. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. I spent a lot of time in local television and radio news. And that's how you get the podcast. A reminder popped up on my phone this morning about one of the trips I was supposed to be taking, like many of you, you know, of course, we had travel plans for this spring and this summer, and I was going to a lot of diabetes conferences. And it's so sad right to see those reminders pop up. But we have been doing a lot of virtual stuff. And that's been really fun to not the same, but a wonderful way to stay connected. And I'm bringing that up because I'm going to put links in the show notes. I've got a couple of events coming up jdrf and other organizations. I did one for Project Blue November not too long ago. They've been really great about scheduling these talks, the online summits, the webinars, and I've been thrilled because my topic right now is the world's worst diabetes mom, and it's been so much fun to share the information That's my book that is just out. And I'm still so excited about that. But it's been really fun to share it to people that I wouldn't have been able to meet, right? Because if I was going to Detroit, which I should have been going to this month, then we would be meeting people just at that summit. But instead, I get to meet people from all over the country. I'm trying to look at the silver lining on it. And really, that's about all we can do right now. But thank you so much the support for the book and just the last couple of weeks has really picked up if you want to check it out. Of course, I'll put a link in the show notes. It's on Amazon, The World’s Worst Diabetes Momis a parenting advice and humor book. It's kind of part memoir, kind of part, advice column and all about our experiences, making every mistake in the book when it comes to diabetes, and watching my son grow up as a confident and responsible and healthy kid, despite my many, many errors along the way. So thanks for letting me tell you about that. And boy, I hope we get back to see each other in person. Soon, it'll be a while, but it'll get better Right to Brec in just a moment. But first diabetes Connections is brought to you by Real Good Foods, nutritious food delivered straight to your door. They have so many options. They have pizzas, I think they were first known for their pizzas and they have this great cauliflower crust pizza, chicken crust pizza, and the pizzas come in different varieties or just plain crust and then you can make your own. We also really enjoy the breakfast sandwiches. They are seven carbs per sandwich. 22 grams of protein, they always post up on their Instagram, they have these grape varieties that what they show it you could really do to jazz this stuff up and people put all sorts of things to add to their sandwiches. I like them just the way they are. You can find out more about all of their products, where to buy How To order, just go to Diabetes connections.com and click on the Real Good Foods logo. My guest this week is the star of the newest superhero show on The CW Brec Bassinger plays Stargirl aka Courtney Whitmore, and this show is getting great reviews. I will link some of that up in our Facebook group. And if you're not familiar with the CW lineup, this is the same people behind the hit shows Arrow and Flash and Supergirl. I will put this clip in the group as well. No, you can't see it. But here's a little taste. (Show Clip here) Stacey Simms 5:38 Stargirl is set to premiere May 18. Now I first spoke with Breck three years ago, and since then she's moved out she's living on her own. And as you'll hear, that is a big reason why she now wears a CGM. I need to tell you we did this interview back in January before COVID-19 and the quarantines and all the changes we're going through right now. So I tell you that just So you're not surprised at the tone, right? It's a little bit different, a little bit lighter than we might have done right now. And she's also talking about travel and conventions and things that you know have absolutely changed. Alright, but here is my interview with Brec Bassinger Brec thanks so much for coming back on the show. It's been a while. It's great to talk to you again. Brec Bassinger 6:18 Yeah, three years. It's good stuff. Stacey Simms 6:21 A lot has certainly changed for you. This is so exciting. I mean, you were busy then. You're busy now. But what can you tell me about Stargirl? I mean, we'll talk about diabetes eventually. But let's talk about the show. Brec Bassinger 6:33 The important stuff in life. All of last year 2019. I was in Atlanta filming it. I've seen a few of the episodes and I'm really proud of it. I've never been part of something that I'm so like, shamelessly proud of where like the sounds are put doesn't like bragging I'm just so proud of I want every single person to see and I feel like that has to do a lot with the show runner. His name is Geoff Johns. He worked on like wonder woman and he just so amazing and like this spirit and happiness he brought to us that I feel like really just rubbed off on everyone. That was a part of it. So I I really am shamelessly. So excited for everyone to see it. Stacey Simms 7:10 I think that's great. And you know, we've been watching the CW, DC heroes comic book shows for a couple of years now. And you know, they're just fun. And they're for families. They're good hearted. Is this in that same spirit? Brec Bassinger 7:23 Yeah, it totally fits in with those. I've had. My family they got to all watch the first episode of the holidays with me, and they all really enjoyed it. I feel like as a whole, this one's more comparable to a film like a movie just the way films like the way it's written, like, like Flash and Arrow. It's normally like a villain per episode. And ours is more kind of like one season story arc like you can't just sit down and watch one episode and know what's going on. You kind of have to watch the full season more like a stranger things. I'd say that's kind of the main difference, the odds of like fear and it's just like happy it's not too dark. It's not Raise you like it's definitely a family friendly show, which there's not much of those. Yeah. Stacey Simms 8:04 a that is great to hear. All right. So I know nothing about TV process and CGI and everything else. But to watch what's out there already. It looks like not only are there a lot of special effects, there's a lot of practical effects and you're, you're doing a lot of stunts. Are you doing all of those stunts or some of those stunts? I mean, it looks like it's a very challenging role physically. Brec Bassinger 8:23 Yeah. So Stargirl, she has her her cosmic staff. So before we started filming, they put me in training with like staff training and stunt training. And so I got to do a lot of it. It was it was so funny because like at the beginning of the series, even with a couple weeks of training behind my belt, they would hand me the staff in a scene. And I just, like forget how to act because I would be so overwhelmed with having to like fight with this six foot long, both staff, but I thought that was really special because at the beginning like Courtney or struggle, like she shouldn't be as comfortable with that staff. And then towards the end of the season, when they gave me some staff, I felt so confident wasn't even thinking that it was coming. have like an extension of my arm at that point. And that's where Courtney should have been. So it was cool to kind of have that journey with Courtney. Stacey Simms 9:11 Yeah. All right. So let's jump in and talk about diabetes. When you're training with a six foot both staff and you are not six feet tall. What does that do to your blood sugar? I mean, I'm assuming that there was a lot of planning that had to go into that and you really had to stay on top of things. Brec Bassinger 9:24 Fortunately, like I exercise a lot so I know how to regulate my blood sugar cuz definitely like when I'm more active, it causes my blood sugar to drop. But with the stunt training stuff, it's a lot of just staying still and moving the staff around me so bad and it actually dropped my blood sugar. It was more trying to figure out like on fat I was working like one day I work 20 hours obviously that messes with my blood sugar and I really just have to learn to accept the circumstances and some days I was gonna have highs and lows and stop beat myself up about it because I I was I was working hours that aren't humanly normal. Unknown Speaker 9:59 Can you share your diabetes management. Do you wear a CGM? Do you use an insulin pump? That sort of thing? Brec Bassinger 10:04 Yeah, so I've always done insulin injections. I have my pin and actually have a half unit pin, which I got this past year, which has been really helpful. And then I have a CGM, a Dexcom. Stacey Simms 10:14 Oh, and when did you start using that, if you don't mind me asking Brec Bassinger 10:17 two years ago, Stacey Simms 10:18 so it's pretty recent. Brec Bassinger 10:20 Yeah, I started living by myself. And it was either that or one of the diabetes service dogs. And I had the CGM for the very first time I was like, Okay, I can't imagine a life without this just for safety reasons. And my mom wanted me to have something where she could feel more secure. Stacey Simms 10:36 I was gonna say who gave you that choice because as a mom of my child, Brec Bassinger 10:40 still in high school, especially during that time, I was having so many lows during the night, actually, when I started eating really healthy and working out a lot but because of that, I was just having lows all the time. And she's like, I do not feel comfortable. You living by yourself with all these lows. This is not safe. And so Stacey Simms 10:57 do you share with your mom like she just said does she see your number Is that not Yes, Brec Bassinger 11:01 I share with my mom, my dad, my boyfriend and my fellow diabetics with OnStargirl with me in Cameron Galvin, we have each other's follow apps. And that's really fun. Stacey Simms 11:12 Well, there's another person with diabetes on the show. Brec Bassinger 11:15 Yes. And we're both superheroes on the show. I'm like, come on. Stacey Simms 11:18 So did you know each other before the casting? Brec Bassinger 11:20 No. Well, that's the thing we had never met. I had a film something with one of my one of my friends. And she had reached out to me, she was like, Hey, can I give this guy your number? Like, you know, type one diabetic. He's talking about when you involve with Jr. And I told him, I thought you were so can I get in your contact info. So I got this random text like saying, Hey, are you going to the walk next month, if you are about to join you and your friend, Christina. And we just like it kind of sprinkled away. We never connected again. It just never worked out. And then he booked it in like, he goes to give me my number. And we're like, oh my gosh, we talked like three years ago. And he's like, Oh, it's all coming back to me. So it was like Cuz we hadn't met, we had talked it was really funny and weird. Stacey Simms 12:03 That's great, though. I mean, obviously not everybody who has diabetes is going to be friends. Right? I have my son accuses me of that sometimes like, Oh, you should meet this person. But it's like it worked out really well. Brec Bassinger 12:15 But I have to say like, I, maybe this is like an optimism or not not just rose colored glasses. Definitely. Every time I need a diabetic, they're the best person to my eyes and like, Oh, I lost them. We go through the same things for soulmate best friends, at least with my experience. Yeah, like I said, first podcast is might be a part of that as Stacey Simms 12:35 well. I think it's more, you know, a 15 year old boy doesn't want his mom making friends for him. Right. But everybody could definitely do that. Unknown Speaker 12:44 So all kidding Stacey Simms 12:45 aside, though, I'm sure you don't talk about it all day on the set. I don't want to imply that you do. But has it come in handy. I mean, do you both kind of help each other is there is it just a kinship and a friendship on set. Brec Bassinger 12:58 I think it's more of having Got companionship, that person who understands when we're on the 17th hour of work and they bring out another snack that just is carbee. But we're hungry and sleepy, but we don't want to eat all these carbs and just being able to look you get like look at each other and talk to each other and understand that was just so nice to have. Stacey Simms 13:18 And you're both Well, obviously you're playing the superhero, but the other actor is playing a superhero as well. Brec Bassinger 13:23 Mm hmm. Yes. Okay, so that Stacey Simms 13:24 will lead me to my one of my questions. I had a couple of listeners who wanted to know if you have any issues wearing diabetes technology under the costume. Right back to her answer, but first diabetes Connections is brought to you by One Drop, and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops 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 includes access to your own certified diabetes coach have questions, but don't feel like waiting for your next doctor's visit. Your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more. Right back to my interview. I'm asking Breck about wearing diabetes gear under the costume. So you don't wear an insulin pump. But you were a CGM. And the Dexcom is just a little bit of a raised bump. Do you have to do any accommodations for that? And I know it can be personal So Brec Bassinger 14:44 no, no, I'm, I'm an open book. When I was doing the cuts to the costume. It took in about 12 to 15 sittings hours and hours upon work like dozens of people touched and worked on it. And while we were doing the city I saw the G five which was bigger than the G six. It's still small but bigger. And they're like oh, but you can take that off. And I was like I can, but I'm not going to because I just I for safety reasons. It makes them feel more comfortable. It helps me like everything in Lj the costume designer, she was super understanding. But yeah, I haven't come my super suit is super tight. So I'm sure if you watch close enough in the series comes out, you'll be able to spot it sometimes but like it is what it is. Stacey Simms 15:30 Well, you just gave a challenge to everybody with diabetes in their family watching they're gonna be freeze frame. I know. Brec Bassinger 15:37 You're gonna be able to see it. Fortunately, I think a lot of times they would go in and edit it out. We do have that. Oh, yeah. And editing budget, which makes it nice, but I like some of the episodes I've watched. I've spotted it. So I'm so curious to see if other people will be able to as well. Stacey Simms 15:52 And let me ask you about Cameron, if you don't mind. And again, this is too personal. I'll take this part out. Let me ask you about Cameron, just as he were up. pump for CGM, can we be spotting for stuff on him? Brec Bassinger 16:02 Yeah. So see, I know he's had more experience in like the pump world than I have. I've never had one. So that doesn't take much. I'm not exactly sure. I know he was more lenient to take it on and off than I was. But that would be a question for him. I'm not really sure. Stacey Simms 16:20 All right, well, we'll just get a remote controls that will just stop it as the show goes. That's really funny. Yeah. You know, it does have to be difficult because as you said, there's crazy hours, they are feeding you, but maybe it's not exactly what everybody wants to have at those long hours. Those long days. As you mentioned, the carves, you've been in television for a long time. I mean, I'm curious, are you able to talk to people on the set and say, you know, I really would prefer this or I need that or is it...
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Where Was Your Diabetes in 2015? A Look Back After 300 Episodes
05/05/2020
Where Was Your Diabetes in 2015? A Look Back After 300 Episodes
We started the show in Summer of 2015. This week, Stacey takes a look back at what was happening in diabetes technology at that time. Tandem had just announced you'd be able to upgrade without getting a new pump, Dexcom gave up on the Share cradle an Bigfoot & Beyond Type 1 were just coming on the scene. In Tell Me Something Good, we share your stories! What was happening with your diabetes in 2015? ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!
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Chris Wilson: Helping People With Diabetes Stay Connected On Facebook & Beyond
05/01/2020
Chris Wilson: Helping People With Diabetes Stay Connected On Facebook & Beyond
Chris Wilson helps run some of the largest diabetes technology groups on Facebook. He's also always on the lookout for the latest news from these companies and very involved in clinical trials. Chris also shares his diagnosis story, inside scoop on Facebook groups and even talks about bowling in sandals. Yikes. In Tell Me Something Good, a middle school 3D printing class helps out a 9 year old with type 1 and a running event goes virtual & big This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By real good foods real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, Chris Wilson helps run some of the largest diabetes tech groups on Facebook. It turns out he's also very involved in clinical trials. This one for a new emergency glucagon, Chris Wilson 0:39 kind of an interesting experience. They hook you up to IV and so on and push your blood sugar down, I want to say under 50 and then turn off the IV and give you the injection and watch what happens. Stacey Simms 0:52 Chris tells us more about participating in trials. Staying on top of diabetes news and bowling in San Jose. Tell me something good. A Middle School 3d printing class helps out a nine year old with type one. And a running event goes virtual and big. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I'm your host, Stacey Simms. And you know, we aim to educate and inspire about type one diabetes by sharing stories of connection here. How are we doing these days? I gotta tell you, I'm having good days and some rough days. I think like everybody out there. I don't know. I feel like I'm not doing enough. Right? I have this weird feeling some days where it's not like I'm not doing enough in my house, which I am not because we moved to a new house at the beginning of March. I know great timing. And so when I tell people that they're like, Well, you've had so much time to set things up and get organized. I kind of Yeah, I guess We haven't really jumped right in and set everything up the way I think we might normally do. We certainly have the time. And many rooms look very nice. Many rooms still have stuff in boxes. Because I don't know, there's there's some days where I have a lot of urgency. And I feel very efficient. There are some days when I lie on the couch and watch YouTube all day. So I'm trying to be kind to myself, like I always advise everybody else to be, you know, I don't think this is very unusual. There are some people doing amazing things out there. I mean, I don't so, you know, I'm trying to figure out what I can do. I'm trying to serve the diabetes community, certainly, but you know, I think we'll find ways to help as we move forward here, certainly in my local community as well. But I was talking to my kids about school. My daughter was concerned about the number of credits she was able to register for, I mean, long story short, like a lot of colleges out there. They're making some changes they're adjusting. No decisions have been made yet, but the way that people registered for classes changed a little bit. And so she was really concerned about Getting the number that she wanted as an incoming sophomore. And I said to her, you know, why? What's the big deal? Because this school year may look totally normal. Everybody may go back to college, everything's fine. You know, who knows? It may look extremely different. Nobody goes back to college, they continue online learning or they get there and things change. I mean, who knows what's going to happen this fall? So all we can really do is act like it's going to be, quote, normal, register for the classes that you can, but expect the unexpected and realize that, you know, maybe you'll take some summer classes. Maybe you won't graduate in exactly four years, which horrified her you she's a very good student. And I was able to say to her look, did you have big plans for 2023? Yes, she's not on a set schedule, which kind of made her laugh, but also made me realize I've got to be more kind to myself, too. I mean, the podcast is not getting out on Tuesdays, like clockwork, as it has been, and I very much pride myself on that schedule. I think it's Hey, to let these things go, right. I mean, we want to come out of all of this with our mental health as best as it can be. And if that means tonight, I need to watch the what's up with that skit from Saturday Night Live on repeat, because and if you haven't seen this, I'm not really into Saturday Night Live lately, but I saw the one from home. I laughed so hard at the what's up with that, and I couldn't believe it was an ongoing sketch. It's so stupid and so funny. And it was just remarkable. And the one with Zach Galifianakis where he's playing the flute, I'll link it up in the show notes. That's how much I left and it's so dumb anyway. But if that's what I need to do that night, I'm going to let myself do that. So a long way of saying, I hope you're hanging in there, I hope you're not being too hard on yourself. For You know, when we went into this, we all thought I'm gonna organize my house and I'm gonna work out every day and you know, there are people doing wonderful things, but it's okay to do ordinary things and be there for each other and just come out the other side of This was a feeling that we made it through. I keep reminding myself we're doing something important by staying home. Right. That's how we're helping. One thing that really has helped me a lot through this is doing some of these live events and chat events and just the zoom calls. I've been doing a bunch lately, had a lot of fun last week doing the world's worst diabetes parent meetup. That was amazing. Thank you Project Blue November for letting me do that on your page. We got a great group chat with some parents told our mistake stories and gave away some books gave away some amazon gift cards. I'm doing stuff this week with the college diabetes network. And of course, I will be doing the 300th episode taping. As you listen, that will be Wednesday. So I believe this episode is going to be coming out either late Tuesday night or Wednesday morning. So Wednesday, April 29. I will be live on Facebook answering your questions and talking about the diabetes community in June of 2015, which is when I launched the podcast holy cow So that's the episode 300 taping. Okay, all right, getting to Chris in just a moment. Diabetes Connections is brought to you by real good foods. And last night Ben he came downstairs and said, Hey, do we have any ice cream? And we're at the point of this where we have quite a lot of ice cream we have, but we didn't have what he wanted. We had like regular I think my daughter had some Ben and Jerry's. We had some mini ice cream sandwiches, but he wanted the real good foods ice cream that I've talked to you about. And I said, I think maybe there's some in the garage freezer and he went and looked and there wasn't any love, so I have to order some more. And as I'm looking right now there is a sale 20% off on their ice cream, so I forgot to get Benny's order today. He really liked the peanut butter. They have the super premium peanut butter chocolate chip ice cream is so delicious. I happen to be a big fan of just the chocolate and my husband likes the mint chocolate chip. We didn't try the salted caramel list. I'll have to put an order in for that. This ice cream is so tasty. It's not like that. A lot of lower carb ice creams, you know that chalky kind of chunky weirdness that you can get sometimes, but this is, as they say, a real ice cream experience with real ingredients, low sugar, 200 calories per serving, they list all the ingredients online so you can read everything that goes in it. And of course, when they ship it to you, they ship it in a cooler with dry ice when we got our first shipment of ice cream. It had we're in North Carolina, we're in Charlotte where it's already warm. I know it may have just snowed where you live, but it's been beautiful here and when we got our first shipment, the ice cream is frozen solid. They do such a great job free shipping on orders over $50 just go to diabetes, connections calm and click on the real good foods logo. My guest this week is well known to a lot of you who are on Facebook, or maybe his profile picture is you may not actually know too much about him and that's why I'm talking to him today. Chris Wilson is one of the admins for two very large closed Facebook groups. We're talking thousands of people in these groups all about tandem and Dexcom. Well, if you're not familiar, and I know some people still aren't on Facebook or have left, you know, an admin is somebody who may have created the groups, but is always there to make sure things run smoothly. They can add or remove people or kick you out for bad behavior, that sort of thing. I run two groups on Facebook, and it's a lot of fun, but it can be a lot of work. And Chris always seems like he knows an awful lot of behind the scenes stuff. He doesn't work at tandem or at Dexcom. He gets asked that a lot. And we also talked about his clinical trial experience. I didn't realize like he had so much to say about that was very interesting. So here is my interview with Chris Wilson. Chris, welcome to the show. Thank you so much for jumping on to talk to me. I really appreciate it. Well, thanks for the invite Stacey. You know, it's one of those situations where I feel like I know you because we talk on Facebook all the time and I see your posts and you know, I read the valuable information you provide And then Chris Wilson 9:00 I realized as we were recording as I, as I hit record, I don't really know that much about you at all. I'm not sure I've been less prepared for an interview in a long time. So I appreciate you writing this out with me. Well, I mean, that's kind of the the nature of the the online community is we interact with people, you know, we get to know them, at least in one aspect of their lives, but somebody that you've never met in person, you never had a chance to sit down and have a drink with or whatever. So, Stacey Simms 9:29 well, I'm gonna start with a very hard hitting question. I did my research and I looked you up on Facebook. And it was very difficult because we're already Facebook friends, but it does say the last time I wore shoes was January 2015. Is that true? And if so, what's with the not wearing shoes? Chris Wilson 9:47 That is true? It just sort of I mean, I wear sandals. outside the house, it just sort of happened by accident. My job's done. don't require me to, you know, wear close toed shoes or anything I live in Southern California on a really cold night in the winter it might get down into the 40s there's you know, no real need to wear close toed shoes and insulate one's feet. Stacey Simms 10:18 All right, okay, so I have a much better mental picture of your day to day life. No close toed shoes do formal wear. You're not going to the office with a briefcase. Chris Wilson 10:28 Right? I even actually have a pair of custom made bowling sandals that I use for bowling. Stacey Simms 10:33 You do not you? I do. Can you post a picture of that when we do the when we hear this? Because that just sounds like you never got hurt wearing them Unknown Speaker 10:42 now. Oh, man. That's funny. Chris Wilson 10:47 Well, when I had the idea to do it, because bowling was at that point, the only time I was wearing shoes, and I sort of had the idea of Hey, I could you know, take the soul off of these a tournament a bowl of cheese, replace it with a bowling soul and be Half of my friends said, Oh, that's awesome. And about the other half said, That's the dumbest idea I've ever heard in my life. Stacey Simms 11:07 Well, now that I know you're not getting hurt, I'll refrain from commenting, but I'm what my initial reaction was. Okay, so we're going to talk bowling, we're going to talk all sorts of stuff. But let's start with diabetes, which is really kind of how we know we found each other. Certainly, Tell me your story. When were you diagnosed? Chris Wilson 11:26 I was diagnosed my freshman year of college. Oh, wow. I had and I was probably starting to really get the beginnings of symptomatic as I was leaving for college. But you know, you go away in August and I went to school 3000 miles away from my parents on the other side of the country, and so no interaction with them. You know, they didn't see me for anything like that. And I started losing weight in the classic symptoms thirsty all the time having to go to the bathroom all the time, but you never crossed my mind that something that could be diabetes. This lasted all the way until Thanksgiving. I went to go see my grandparents for Thanksgiving. And my grandmother took one look at me and said there's something not right with you. My grandfather was type two. So he had a meter and two mornings in a row, they prick my finger and got readings in the three hundreds. And I went to calling the advice nurse for my health insurance and said, you know, hey, what should I do? I'm from California. I'm in DC going to school. Right now I'm in Pennsylvania, my grandparents house and they said, stop whatever you're doing, do not pass go do not collect $200 get yourself to the nearest emergency room. When I got there. Actually, the meter wouldn't even read. They had to send my blood to the lab to get a blood sugar reading and it came back at almost 1000 milligrams per deciliter. And I was well into DK And the doctors looked at me and they said, We can't explain how you're alive, let alone conscious. Oh my gosh. And so I got to spend a couple of days they actually sent me to the pediatric ward even though I was an adult, because that's where all the people that knew type one were right. So I spent a couple of days in the hospital there my my mom flew out to come and collect me and they taught me how to give myself shots and prick my finger and everything else. And then after that, I went back to school when finished out the semester. Stacey Simms 13:32 Okay, I have a couple of quick questions for you. Do you remember what it felt like when you got your first dose of insulin? I've heard that that's just an amazing feeling after you've been feeling lousy like that for so long. Chris Wilson 13:43 Oh, it is it's you can almost like feel the the ketones leaving your blood is sort of the the way that I think about it. almost feel like pins and needles inside as things get really bad. And if it's happening slowly and building up, you don't necessarily feel it acutely. You just sort of build up a tolerance to it when they started me on the insulin and everything else it was just like this weight was lifted and I didn't even realize how bad I had been feeling until I felt better. Yeah, that's amazing. I Stacey Simms 14:14 you know, obviously not living with diabetes myself I don't have I can't I can't relate to that at all. But I can only imagine how much better you must have felt. But then to go back to college, what was that transition? Like? Because I assume your mother did not move into your dorm Chris Wilson 14:27 always wanted to? She did not. She made me tell my roommate and all the other people on my floor. What was going on? Some of them or were actually like oh, wow, cool. You know, you get syringes and stuff. It's almost like we're living with a druggie. Lots of joking about it, but at least the first couple years actually, it was almost like an extent I had a really long honeymoon phase. And so I didn't even really need it. You know, I gave myself the insulin and I ate when I was starting to feel hungry. You're low and didn't really even think about you know, managing intensely or correctly or the way that we do now. It was just okay this happened. We'll we'll deal with it. And Stacey Simms 15:15 and when when was this What year was this? If you don't mind me asking? This was 1997 Okay, so before certainly before CGM, and well before a lot of people even had an insulin pump, Chris Wilson 15:25 right he will log was I believe brand new at the time. Stacey Simms 15:29 It is wild to think about that stuff. I mean, Lantus had just been approved pediatric Lee when Benny was diagnosed, we thought Wow, this is so cool. We get to use this new insulin that just got approved. You know, it was really it's amazing when you look back on it. When did you start getting interested in technology and I say it like this because I assume you are pretty interested since you run these these groups now on Facebook. Chris Wilson 15:50 I didn't pay too much attention to it because for the longest time, I was surviving uninsured haha and the over The counter Rnm I actually couldn't get to a Walmart. There wasn't a local Walmart. I was getting it from CVS in the basement of the Watergate hotel, if you believe that. That was the the local CVS. Wow. And that was just, you know, kind of what I knew. I mean, even at that point, anything newer than that, the more modern analogs and stuff like that was just prohibitively expensive without insurance. So I figured that out, I figured out you know, which meter had the cheapest test strips that I could could get and I didn't test nearly enough wound up in it DK and hospitalized briefly, once during that time, although not entirely due to the insulin regimen. My parents had come to visit me and I, being a impetuous college student got mad at them and decided I was going to take a road trip so I hopped in my car and drove to Florida from DC without any insulin. By the time I got back, I was feeling pretty awful and went and checked myself into the yard. Stacey Simms 17:00 I feel like I want to say something. It's funny, Chris, as a parent, I'm, you know, I hold my breath when I hear stories like that, but as someone who's talked to people with diabetes for a long time now, so many people have done things like that it's just life, you know, and if you as you're listening you're I could never imagine, you know, things happen, right? It's nobody's perfect. So I'm glad you were okay. That is kind of scary. Chris Wilson 17:24 Well, I wouldn't do that now. Oh, of course. I know. I know a lot better. Now. Stacey Simms 17:28 Of course, when were you able to get insurance and then to get you know, a pump or CGM and everything that you have now. Right back 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 also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test trip plans, plus you Get a Bluetooth 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 prescriptions are Kobe's required. One less thing to worry about not that surprising. When you learn that...
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Fighting COVID-19 When You Have Type 1 Diabetes
04/22/2020
Fighting COVID-19 When You Have Type 1 Diabetes
What happens when you're diagnosed with COVID-19 and you live with type 1 diabetes? It happened to Patric Ciervo in early March. Patric shares his story, including how his diabetes reacted, hospital issues with people who don’t really understand insulin pumps and how he’s doing now. In Tell Me Something Good, a familiar name in the diabetes community, recovering from COVID 19 and now donating plasma, we salute more health care heroes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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 real good foods, real food you feel good about eating and by dexcom take control of your diabetes and live life to the fullest with dexcom. Announcer 0:21 This is diabetes connections with Stacey Simms. Stacey Simms 0:27 This week recovering from COVID-19 while living with Type One Diabetes, Patrick servo was diagnosed with the virus. In early March, Patric Ciervo 0:36 my temperature started going down like a 101 to five times 5am it was about a 93 I woke up in a puddle of sweat, we call 911. Fearing that I was going into some type of shock Stacey Simms 0:50 Patrick wound up in the emergency room with a committed he shares how diabetes was managed issues with people in the hospital who don't really get insulin pump And how he's doing now and tell me something good a familiar name in the diabetes community also recovering from COVID-19 and now donating plasma and we salute more healthcare heroes. 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 diabetes connections so glad to have you along. I'm your host Stacey Simms, we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two back in 2006. He is 15 now and a freshman in high school. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast I used to work in local radio and television news. Before I jump in with Patrick a little bit of housekeeping, we are fast approaching Episode 300 This is Episode 298. I have never made a big deal about numbering episodes because I don't know, it doesn't really matter what order you listen to the show in. I do number them internally just for organization, you know, keep track that way. And depending on what app you use, I know Apple podcasts will number them, you can see it right there in the app. Depending on what you use, it shows up or it doesn't. But we do have a very robust search engine on the website. And that does not rely on numbers. You just search by topic. And for me as I listen to podcasts, that's how I want to find previous shows, right? If I want to look something up, I'm gonna put the word into the search. I'm not gonna remember Oh, that was Episode 212, or whatever. I bring the numbers up though, because at 300 episodes, a lot of podcast apps start limiting what you see, when we get to 301 or you know, 350 or who knows 400 You're still only going to be able to see 300 episodes in the app. I'm not quite sure how many people are scrolling through to see everything. I am putting something new at the website you should be able to with one click to see all 300 episodes something unfortunately we don't have right now, because frankly, it just takes forever to load. But watch for that at diabetes, connections calm, they'll be a way to click and see all 300 episodes, if you're interested in kind of going back and scrolling through back to 2015. I should also mention if you subscribe on a podcast app like Apple podcasts, which is a really easy, easy way to listen to the show, if you listen through social media, that's fantastic. Listen, whatever, you know, whatever is easiest for you. But if you use a podcast app, and you subscribe, that 300 episode limit doesn't apply. you subscribe for free, I wish it was called something else. But when you subscribe to a podcast, it has nothing to do with buying a subscription or signing up for a subscription. You're literally saying to the app, give me all the episodes for free. So there you go. Gotta say a quick thank you for getting me to Episode 300. I'm so thrilled when we started I wasn't sure how long it would last. I certainly wasn't looking five years into the future. So thank you So much for listening for sharing these episodes and for frankly, becoming part of a community. We have an unbelievable Facebook group and I've connected so much with people over zoom and the chat over this time. I really appreciate it. So thank you for letting me continue to serve you. Diabetes Connections is brought to you by one drop. And I spoke to the people at one drop and you know, I was really impressed at how much they get diabetes. It makes sense because 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. Imagine that one drop diabetes care delivered, learn more, go to diabetes connections calm and click on the one Drop logo. My guest this week was one of the first people in his community officially diagnosed with COVID-19. And Patrick servo was diagnosed with Type One Diabetes more than seven years ago. So like you I had a lot of questions about what it is like to live through Coronavirus, while also living with type one. Now, of course, keep in mind as we're speaking here, every case is different. Every case of Coronavirus of COVID-19 to be specific, presents a little differently, some very mild, some much more severe, a lot of asymptomatic cases we hear about and type one diabetes kind of goes without saying on this show. Everybody handles that differently as well. So please remember that this is about Patrick. We can extrapolate some information from here. Frankly, I find it very reassuring. But at the same time, please talk to your healthcare provider. Don't jump to conclusions and I will link up much more information at diabetes dash connections. Calm the episode homepage in the podcast show notes. So here's my interview with Patrick servo. Patrick, thank you so much for joining me. How are you doing? How are you feeling Patric Ciervo 6:09 these days? I'm feeling well, thankfully, my symptoms have been gone for a while. And yeah, I've been feeling good. Stacey Simms 6:19 Wow. All right. So from where I sit, not knowing anything really sad. It just seems so scary. So I appreciate you sharing your experience. Let's back up. How did this all start? You've been living with type one we should say for for seven, seven and a half years now. So you're not exactly new to type one. But what happened in terms of feeling ill a couple of weeks ago. Patric Ciervo 6:40 So basically, early in March, I had a busy weekend and everything. There was a work event on Friday, about where we went out because there was someone's last day, but I was running around Friday and Saturday, Sunday night. I was at my girlfriend's apartment and we were just beat from the weekend she works with me. So we were just beat from the whole thing. And she noticed that my body temperature had started feeling hot. But because we were both rundown, we didn't really think too much of it. So, the next day I woke up, I felt good. I didn't really feel bad at all, like maybe a minor thing, but nothing to worry about. So I went to work Monday, but that night, my body temperature was hot again, and her roommates a nurse, so we had a thermometer, and my temperature was 103. So we went to the primary doctors on Tuesday, I was tested for the flu, which came back negative Faker really diagnosed me with anything. I didn't mention Coronavirus, but he didn't think it was that he tested me for the flu again with a more accurate test but the test will come back the next day. So in the meantime, he gave me an A biotic and Tamiflu and told me to take Motrin Tuesday night, my temperature started going down like a 1012. By the time was 5am. It was about a 93. I woke up in a, like puddle of sweat, we call 911 fairing vows going into some type of shock. And I was in the car since then. Unknown Speaker 8:19 So when you guys called for an ambulance, were you thinking this is diabetes related? or What did you Patric Ciervo 8:25 think? Well, she had looked up and everything that diabetics have more like more of a chance to go into a shock from fever or something like that. So she was kind of the one pushing the 911 call. So we did that. I didn't think too much of it until a little bit later on. When I was like in the ambulance, I still wasn't feeling well. By the time I got the ER, I was feeling good, and my temperature was normal. Stacey Simms 8:53 It's so hard to be the person in that circumstance, right? You're not thinking exactly clearly the person that called you know, is trying to figure out What's going on? When do you remember? Do you remember when they said okay, this is gonna be COVID-19 Patric Ciervo 9:06 they didn't they test me again for the flu in the ER, they tested again twice, and that both of them came back negative. We got the call from our primary the second flu test that he did came back negative, but I was already like things were back to normal, my temperature was fine. So they tested me for COVID as a precautionary, and because they tested me, they put me in the ICU and my own room and they want me to be there until the test results came back, which they were told would be the next day. I didn't get it back till that Saturday. I was in there on a Wednesday. Wow. But the doctors that would come in saw me like I was immediately getting better and everything. My only symptoms before the diagnosis were the fever and a cough. I didn't have trouble breathing, but they thought I looked good enough that they didn't think It was COVID Stacey Simms 10:01 That's amazing. So you start feeling better and that's when you find out that's what you had. Patric Ciervo 10:05 Yeah, I know. So I'm thankful I can't like I was already on the mend when I found out and it was a little bit before like all the craziness started in the world and so I didn't go in in too much of a panic state. When I found out I was diagnosed with it. There was still like a shock like, oh God, like diabetic and I've been hearing these things aren't good, but I was getting better each day. So after like a deep breath and everything able to get back to a good mental state. Stacey Simms 10:35 I know everybody wants to know about diabetes and you know what you now looking back what you think of that part of it, but I want to ask before we move on, How bad was that test for COVID-19 you hear like it's really far up the nose is that How bad was Patric Ciervo 10:49 it? Yeah, it was. It was exactly that out the nose and everything as they did in both nostrils, two different ones at once. It was not fun at all. You know, it was something I could live with and everything. Stacey Simms 11:04 I'm sorry to ask. I just you know, I think about what how they test you for strep. Yeah, right. It's always like you gotta gotta gotta get it far enough to gag a little bit. Uh huh. Your Patric Ciervo 11:12 nose. Oh my god. Yeah, it was pretty much yeah, exactly like that only your nose and I was like, flinching and everything. But it was totally doable. Stacey Simms 11:23 And I know it's worth it. Please don't send me nasty emails like, yeah, it's just one of those things that I don't want to ask about. But looking back, what about your diabetes during that time? I think people do get very concerned about you know, treatment and blood sugar's you didn't know you had it. So it was kind of difficult or different to think about managing that way. But looking back, anything stand out? Patric Ciervo 11:45 Well, in the hospital, my blood sugar was higher than normal. For the most part. I'm not sure how much of that was the illness related. I was very stressed in the hospital and could not move at all. So I think that also had part to do with it. Because I didn't have a problem coming down from the highs, there was nothing with my diabetes to think like something's off. I need to get checked out the days leading up to it. I've been fairly decent you know for the most part Unknown Speaker 12:14 so you didn't notice any like really wacky high blood sugars before the diagnosis. No, no treatment, right like that. Patric Ciervo 12:21 No, no. Yeah, thankfully. Stacey Simms 12:23 So when you got the test back at the hospital You said you were already kind of on the mend. How much longer did you stay there? Patric Ciervo 12:28 They released me Friday, and I got the test back Saturday. So I was self isolating just to wait for the test result. And then that's when I got the call. Stacey Simms 12:40 What do they tell you after you test positive what happens next even at home? Patric Ciervo 12:44 Yeah, they had given me in the hospital what to do if it does come back positive. They gave me a worksheet like to do less than everything. Just basically everything we've been hearing, you know, self isolate for two weeks. I think it was something like 72 hours, but two ways you can be like out of the quarantine is for 72 hours, you can't have a fever and other symptoms have to be gone. And the other one was or you have to get tested again, it has to come back negative. And I didn't get tested again. When I was at home quarantine. I only had a fever one other time. Stacey Simms 13:21 So you feel pretty confident your past. Patric Ciervo 13:23 Yeah, I did develop a headache and the quarantine. Stacey Simms 13:27 So again, back to diabetes. Did you ever sound like the mom now? But did you call your endocrinologist and loop them in? Right back to Patrick as he answers that question. But first diabetes Connections is brought to you by real good foods. high protein, low carb, grain free, gluten free and terrific. If you're trying to eat keto, their line of foods just keeps getting bigger. We've been talking about them for so long. Now. I think when I started they only had pizza. Right, but now they have stuffed chicken breakfast sandwiches, you can get the pizza, just the crust, so you can kind of make it whoever you want. They have entrees. They are of course available in the grocery store freezers, but they're also so easy to get to your door, their whole line can be delivered. And they have a lot of specials right now. There's free shipping specials, but also on their website. If you sign up, you can get all the coupons and promos delivered directly to your phone, make it very, very easy. Find out more go to diabetes, connections comm and click on the real good foods logo. Now back to Patrick and I was asking him if he caught his endo when he was admitted. Patric Ciervo 14:44 You know what, I had an incident in the hospital where when I got there, they asked me if I had an insulin pump. And I told them I did and they asked me if I wanted to like you know, administrate my own insulin. I said yeah, and there was a bit of a next up with The nurse who was under the impression she was giving me insulin shots, but they weren't not taking the fact that I already had insulin on board. And that, like they would not be calculating that. And so the insulin they gave me and they seem to not want to give me any type of basal insulin, they just wanted to do like check every two or three hours. If I was Hi, give me a correction. I didn't call my personal endo, because they're kind of hard to get ahold of. But I have a, I go to this camp for athletes with Type One Diabetes called diabetes training camp and the endo that has that, that ended that runs it. I texted him about that initially. And every day since then, he had texted me or called checking in how I'm doing. I told him my blood sugar's were high. He told me don't try to get to like 100 to 120. Don't aim for perfect, just as long as you're able to get to 140 to 180. You should be fine. I have any problems. Stacey Simms 16:01 And yeah, I mean, that's one of the worries that I always have in the hospital. I mean, I'm there with my son being crazy mom. So you know, they're not going to give him extra insulin, but it's so frightening for you if you're there by yourself, which you had to be clear that up. I mean, I'm envisioning this nurse trying to give you a shot and you holding up your pump, you know, you're trying to ward her off. Did you argue with them? Patric Ciervo 16:24 Uh, yeah, I mean, I'm not like, I like I don't like conflict at all and everything. But this was like, there was no way I wasn't standing my ground this and everything because I had like, four or five units on board, because I was trying to come down from like a 260 or something. And I'm explaining it to them, and explained that the doctor said that eventually they understood what I was saying after a few minutes. They said, All right, they'll talk to the doctor. And about 15 minutes later, they called me saying that the doctor says fine. Stacey Simms 16:56 No, thank goodness. Do you use a CGM as well? Yeah. And did they let you kind of use that in the hospital? Did they insist on doing finger sticks? Patric Ciervo 17:04 They did do finger sticks for their own record, they said, but that's all my phone. I was just going off that the whole time. Stacey Simms 17:11 All right, so have you followed up with your endo? I mean, it sounds like you're on the mend. Doesn't sound like you needed to check in with him. I'm not trying to mom you Patric Ciervo 17:17 right? Yeah, chicken. I mean, he was texting. We were texting and calling back and forth when I was doing the two week quarantine as well as my primary. My primary had called and everything I told him I had a low grade fever the one night he said, You know, sometimes that happens, I won't be too worried about it unless it's kind of a stays. And it the was one night and I woke up the next morning fine. Stacey Simms 17:44 Alright, so I'm gonna ask you some personal stuff you do not have to answer. All right. Here we go. One of the things that I that we see so often when people in the diabetes community are talking about the fears of Coronavirus is you know, you have to have quote good Control to come out of this in good health, you know, and that we've seen that people, especially with type two diabetes, and all those comorbidities don't do well, but COVID-19 and I hit I always hate asking people I actually I don't I don't ever ask anybody in the show with their agency. And I'm not going to ask you, but are you a perfect diabetic? Patric Ciervo 18:18 I'd say a B plus student. I'm definitely not perfect, but I overall I pretty well control. Stacey Simms 18:27 I just think it's...
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Making CGM Systems Available To Hospitals: What You Need To Know
04/16/2020
Making CGM Systems Available To Hospitals: What You Need To Know
This week.. making CGM available to hospitals.. something new because of the healthcare crisis caused by COVID 19. We talk to Dexcom’s CEO about training and more. Kevin Sayer explains how the program came about, why it’s needed and how he hopes it will help people with all types of diabetes in hospitals. We also talk about other Dexcom news, financial issues and more. In TMSG – taking flight.. finally and a birthday, a diaversary and a family of healthcare heroes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Insulin assistance due to COVID19 crisis: ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcript: Stacey Simms 0:01 Kevin, let me let me start by asking how are you doing everybody staying safe and staying home as much as possible? Kevin Sayer 0:09 I am staying home and staying safe as much as possible I since the office is deserted quite frankly, it's safer than home is respect because there's no one in the neighborhood. So we're I've just been going in maybe once once a week for a little while to take a couple of calls and then working from home I have learned I have learned a lot of things about work at home tools that I that I need, like I needed a better camera on my computer and some better it's interesting as you go through this and realize just little things. Our company. So me personally, my kids are all great. So that's good. Our company Stacey we have done absolutely everything we possibly can to to take care of our people and our employees. We you know, mid March when we Send everybody home. We were definitely the first in our area one of the first in our area. I think Illumina might have been a little bit ahead of us, but we were very quick there and we have work from home tools that we put in place. Our IT team has just been tireless and getting people the type of connectivity and voice services and stuff they need from home. That's been great. We've had to keep the manufacturing plants open, obviously, because patients need product. In light of that, and light the fact that we are taking a group and making them come to work. We've provided them with economic benefits to whereby we can compensate for the fact for example that they are leaving their kids are home from school home. Whereas you don't have the summer daycare plan or the camps you could put them in so we've compensated our people a bit more to make sure they can take care of their families. We've reorganized the place and manufacture train with respect to small pods of people working together. So if someone went might get exposed, they we don't wipe out a manufacturing floor of 800 people just a few. We're making take breaks in groups, we're making them take it literally, we've got thermal scanners, we've we we've got time between shifts, so we're not at full capacity, but we're close. So I think our company's been absolutely as responsible as we possibly can. Through this to our people. And we said that in the beginning that aren't you know, our first goal is our, our employees our second priorities can be making sure is our patients to make sure that they our product and our third goal for community and making sure we're good citizens in the community and do our part and I think our hospital efforts fall into both two and three diabetes patients but also this community in general because when we think of the risks our healthcare providers are going Through to find this. My, my second son is 36. Now so obviously this back many years, but when he was 10, he had bone cancer and he went to a camp called dream Street, a kid's camp, kind of like the diabetes camps, but it was really just a lot of fun. And one of his counselors there was a young man trying to be a stand up comic who abandoned comedy becoming an ER doc in New York City. And our family gets text messages from him on it on a daily basis, just he's giving us a diary. And when you read that, it's like, oh, my goodness. And that's what we need to do to help the community is is a burdens for guys like him. Stacey Simms 3:42 Let's talk about the hospital program then. So tell me what Dexcom is doing the the release is shipping continuous glucose monitoring systems directly to hospitals, indeed, what is the thinking here? Kevin Sayer 3:55 Well, let me take you back a little bit. When this all started More than a month ago when things started getting very big here in the US and even before that in Europe, it became very clear that people with diabetes are more at risk. If they get contract COVID than those without diabetes statistics, statistics are pretty, pretty staggering. I mean, it's, it's plain black and white here. And we had heard from hospitals in Europe and back east. This thing started to grow. They wanted to use our system in the hospital, where we are not approved for use yet. Our system has been used in a hospital and some IRB approved studies in the past because we were preparing for that day and trying to develop a body of evidence that would support this. But it you know, it early phases by us in early discussions with the FDA, because before we roll on full on commercial into the hospital, we need to understand all the things about how our Bluetooth interacts. With all the other communication protocols, in hospital rooms, what is going to talk to where it's going to be displayed. And also make sure that the actual sensor from a chemistry perspective functions the way it's labeled on people in a hospital who are on multiple compounds versus those of us who are home and other routines who are on the compounds we're used to. And so we've done some work on that, but once it started heating up, particularly in centers where an endocrinologist who knew of Dexcom got involved, it quickly became we want this and we want it now. We didn't have FDA approval there. So we started speaking with the FDA. We did get an emergency provision that All right, go ahead. ship to hospitals. And we we we've looked at this and and and we've taken a lot of time on this Stacey . We got 100 f he's worked on this hospital thing full time. We put that many of our people into this to make sure that works. We needed to build a pricing structure for how they could buy it. We're charging the hospitals less than the commercial patients as part of our, our contribution to the community. We know that the sensor, the transmitter has to talk to something either a Dexcom, receiver or a phone. The phones are better options. So we are giving the hospitals phones and or receivers for the beds to manage the patients. We've developed separate training materials for the hospital, devoted our entire Education team, pretty much to them full time right now as they're training the hospitals get upon the system. We have developed a surveillance team literally to take calls to if we are anything going on with sensors to investigate and make sure we understand so that there's not something that we would have missed. We devoted a lot of time and effort to this as a company. We want to make sure it works. We want to make sure we're getting Go there, we are going to help people. The most appealing thing about Dexcom in the hospital over anybody else in the space, there's a couple you know, the first one is the connectivity, like connecting to a phone. Theoretically if the phone can be outside the room where a patient is, or even if it just hangs from the bed, from the from the bullet the bed, but it's a phone and you can use Apollo on an iPad out in the hall, you're able to monitor patients remotely. You know, I've been an ICU use around the country as we studied this market. And I've seen ICU is where the protocol is a finger stick every 30 minutes 48 finger sticks a day. Don't think nurses are following that protocol right now they're too busy. So to the extent we can make that labor much more efficient, and if we can take and the problem in the hospital is not hypoglycemia as it is for the patients in the field so much it's hyperglycemia not only our They they're getting too high because they don't want to be too aggressive on on a direct insulin. If they're not going to be sticking the finger every half hour, they don't have a CGM. So they're monitoring less aggressively. On top of that the steroids treatment and some of the other treatments for the respiratory ailments can go Cause glucose to rise much faster than it would if you weren't in that environment. So what we're seeing is patients going DK and fighting DK at the same time they're fighting to breed. And that's what the physicians and the hospitals are saying. So we have developed a plan and a protocol as to shipping products to the hospital supporting the hospitals, educating hospitals, training hospitals, giving them a place to call, learning as we go, because the other thing remember, most of the doctors here are not people who are used to CGM every day right there, your docks. Stacey Simms 8:57 That's the question I wanted to ask is Can you tell us a little bit more about the training? You said you had people who develop this? I, you know, I'm a huge fan of CGM. We've unfortunately we had to take Benny to the hospital - not diabetes related. But having the CGM was fantastic. It helped so much, but we brought it in, you know, they didn't provide it. But how is an ER doctor? How is a nurse in an ICU? going to take the time to be trained? Can you share any of kind of the process here? Kevin Sayer 9:28 We started with 108 slides user guide and realized that was never going to work Stacey Simms 9:33 108 slides like a PowerPoint? Kevin Sayer 9:36 Yes, slides because that's what you do you become FDA compliant, and you do a follow on user guide and try and walk them through every page. And after one training session. We said yeah, that's not gonna work. And so we condensed it. We have a two page quick starter. And then we have, I don't know, just a several page, other user guide and then we have people available by the phones that they need to solve. For that, and then what we're providing is video training. And we find we can get those trainings done in just under an hour. And then what really is happening, I will tell you where the early phases of this hospitals are phasing it, they're putting it on a few patients and watching seeing what they learn seeing what the outcome is. And then after they do that, then the roll it out bigger are constraining items so far has been getting phones, we've had to go procure the phones ourselves. We've had to buy them from the usual sources and pay cash to get them so we're getting the phones, we're pre configuring the phones. We've got another entity involved who's literally pre programming the phones whereby the only app running on the phone is going to be the dexcom g six app. So again, we are learning what physicians aren't gonna want to do. You talk about training, we don't want to have to train them to program phones. It's easier if we have somebody else program the phones when we're funding that effort as well. But every day you come across a new barrier and a new hurdle to jump over to make this work everywhere. Some of the stories we've gotten so far, anecdotally have been extremely positive. The, but I can tell you the the hiccup today that I heard from one facility is we got we got phone shipped to this hospital, one of the first ones to get phones. And their ID department won't let him use them on the wireless network, because they haven't been tested to meet the hospital security. And so you think you know everything about the hospital environment. And Stacey, that's why we have been so deliberate and thoughtful, and methodical as we do this. We don't want to just drop sensors on a hospital and say use these because if we do what we're going to get as a bad outcome, we have an opportunity to make this work and to make this For patients going forward, so we are really heavily invested in making sure we do this the right way. And, and so yeah, we train them, we get calls back in the cases and several of the hotspot hospitals. We're dealing directly with an endocrinologist who's training patients because there's so much diabetes in the hospital that the endocrinologist literally got involved in the training. Yeah. And and, and so that's been good, but it has been. It's just been crazy. And we have, we very much appreciate the FDA willingness to let us go here. We're going to gather all this data. When we're done. We're going to gather every bit of data that we can gather, and use this as real world evidence and then go back to the agency and say, Look, here's what we've learned about use of the product in the hospital. What do we do next? Yeah, I think that is a great use for this product. Stacey Simms 13:00 You had mentioned that the you're going to be giving the phones and possibly the receivers to the hospitals and selling the sensors. And I believe the transmitter correct me if I'm wrong, a discounted price. What happens to the patient? Because I would be very concerned, having you know, the most notorious - you get an aspirin in the hospital and it costs you $800. You know, if I come in with my own Dexcom sensor, it's one thing but if a hospital puts one on me, is there a guarantee here that the patients that are using this discounted system are not going to be charged full price or even more on the other side? Kevin Sayer 13:44 These people are so sick, that's the least of my concerns. Stacey Simms Interesting Kevin Sayer 13:44 I think I guess I would hate that. This is not being used to keep somebody there to keep somebody safe at school. This has been useful. Thanks. somebody's life and and if our data can can make somebody healthier and better one of the initial stories I heard, for example, young woman comes into the hospital type one, she's in total renal failure. Things look bad. They're gonna put on our ventilator. They said, Wait a minute, she's DKA, let's put her on CGM first. Four hours later, her glucose levels are back down in the range. And not only did she feel well enough to be conscious, but they didn't even put her on a ventilator. And she got Well, what's that worth? Stacey Simms 14:34 Well, Kevin, and let me ask you this, why not then give the sensors free and clear to the hospitals so that they won't I mean… Kevin Sayer 14:42 I will tell you, I will go through that as well. First of all, they don't have devices to receive the data with. Second of all, we've been very thoughtful and plan this as much as we can. Because I don't want to be the person who tells all the parents of Children that you don't have sensors anymore. So when we started this process, we have three groups. We're considering our employees, our patients and our community. We are going to make sure our patients who have CGM in the field still have CGM. And we and we will do that we are charging the hospital some we're giving away the phones to the receivers. This is not a money making endeavor for us, given the amount of people we have working on it, or we're going to get enough to cover what we put into it at best when all of a sudden done. The reason we're charging and we're limiting demand is because the last thing we can afford would be for our patient community to have every patient in a hospital walking on maglev CGM slept on can't do that. We don't have the capacity for that. We have the capacity. We're very familiar with the number of we built models Stacey , based on the number of ICU beds, based on the projected number of cases based on peaks by state Based on everything you could think of the percentage of the patients that have diabetes, the percentage that don't we have a sensor forecast. We said in our initial news release, we've allocated up to 100,000 sensors. And that also means 50,000 transmitters to this, and if the need comes for more, we'll certainly evaluate it. But those allocations are based on what we could see being used in ICU beds. And the demand, we believe we'll have enough. And we'll make enough available demand from the hospitals and supply everything to all of our patients. Stacey Simms 16:37 Kevin, my question was not about Dexcom making money. The question was about the hospitals charging patients and the unintended consequences. Kevin Sayer 16:47 They won't. They won't. if they do, like I said, if they do, I can't control it. The hospital does but but if you look at a hospital and I've, I've had discussions here, Stacey and it's, you know as we go through this crisis, And we look at this as a country and as an economy now I'm getting way off base, I apologize. But it's fascinating to me how the the, the ramifications are going to reverberate through the community. elective procedures in the hospitals are not being done. So because nobody's going in, if you can get that knee replaced in two months, you're probably not going in today. And so you have, you have an economy that's going to be affected long term by all this. I have no idea what hospitals will charge for these sensors. They'll build what they'll bill we've made it as as affordable as possible. And if we can get all these logistics worked out, and the connectivity and all the other issues, we think it's just going to be a win for them all. Going forward. We're also relatively convinced based on the data that we have seen and again, you go to the University of Washington, john hopkins, we've mapped out the peaks in all the states, how many people they think will be in hospitals, and we're very comparable, we can serve that with what we have and then we'll go from there. Stacey Simms 18:11 I'm jumping off the the point of how things are going to change. And as I know, you saw, obviously the whole diabetes community is following Lilly's move to cut insulin to $35. With restrictions. I got a lot of questions from listeners when I mentioned we were talking today about whether Dexcom had any plans for financial assistance programs for people who have lost their jobs and lost their insurance or and feel that the Kevin Sayer 18:37 grant we're studying that right now. And putting together they're putting together several alternatives for me. We are studying that. I won't commit to anything but the time absolutely initiative that we are undertaking and looking at, because this does has become that important to our patients. So we're trying to figure out how that works. And I've had calls with Numerous other companies in the industry to discuss what they're planning and what they're doing. Just so I can get a grasp as to how that works. But we were working on something I don't have anything to announce. And it may be a while we'll see. But but we are considering it. Absolutely. As, Stacey Simms 19:17 as the as you said, as the landscape changes, you know, we're not quite sure what insurance will look like I'm unemployable. Like, there's so many people who have been on the, you know, Dexcom customers for a while. Oh, yeah, I know. We're gonna run out of time. Kevin Sayer 19:28 Go ahead. No, I I agree with you 100%. There are people now Stacey , who have no idea how to manage their glucose without a CGM, because they didn't even learn on finger sticks. These new patients have learned on dexcom from the beginning. If we have learned one thing through this process, in the diabetes community, and we do hold it very reverently, how important this technology is becoming people's lives. And it's not just the patients we're getting every day. testimonials from...
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Stuck at Home? Share Your Voice: Diabetes Podcasters
04/09/2020
Stuck at Home? Share Your Voice: Diabetes Podcasters
D-Podcasters Unite! Stacey teams up with Alan Nolte, co-host of , Amber Clour, host of , part of and Matt Vande Vegte, co-host of and They talk diabetes, podcasting tips and tricks and even previous experience with pandemics! In TMSG – some wonderful healthcare heroes in a diabetes community.. and a big religious milestone while we’re all socially distancing. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!
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Q&A: Lilly "Insulin Value Program" Sets Price At $35 Monthly
04/07/2020
Q&A: Lilly "Insulin Value Program" Sets Price At $35 Monthly
Lilly Diabetes announced this morning it would cut the price of its insulin to $35. What does this really mean? How long will it last? Why are those with government insurance left out? Stacey asks your questions and gets answers from Lilly's US Insulin Brand Leader, Andy Vicari. Here's the From the press release: “In response to the crisis caused by COVID-19, Eli Lilly and Company (NYSE: LLY) is introducing the Lilly Insulin Value Program, allowing anyone with commercial insurance and those without insurance at all to fill their monthly prescription of Lilly insulin for $35. The program is effective today and covers most Lilly insulins including all Humalog® (insulin lispro injection 100 units/mL) formulations.” That’s right. Lilly is putting the price of insulin – including Humalog – at $35. You need a coupon, but it’s for anyone with or without commercial insurance, except for those on Medicaid. “The savings can be obtained by calling the Lilly Diabetes Solution Center at (833) 808-1234. The Solution Center is open 8 am to 8 pm (EST) Monday through Friday. Representatives at the Solution Center will help people with diabetes obtain a card in the most convenient way for them, including through email or the U.S. mail. A card can typically be received within 24 hours by email. If you already have a co-pay card from the Lilly Diabetes Solution Center for an amount higher than $35, no action is necessary. Active co-pay cards have been re-set to a $35 co-pay.” ----- ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript: Stacey Simms 0:06 Welcome to a bit of a breaking news episode of Diabetes Connections. I'm your host, Stacey Simms and I wanted to jump on as soon as possible. And talk about the news from fully diabetes this morning and this is April 7 2020. I'm going to read right from the press release and then we're going to jump into an interview I was able to do with Andy Vicari, who is the US insulin brand leader at Eli Lilly. So as you may have already heard on social media, or on the news, this is directly from the press release. I'm just going to read what it says here, “In response to the crisis caused by COVID-19 Eli Lilly and company is introducing the Lilly insulin value program, allowing anyone with commercial insurance and those without insurance at all to fill their monthly prescription of Lilly insulin for $35. The program is effective today. covers most Lilly insulin, including all humalog formulations.” So that's right, Lily is putting the price of insulin, including Humalog at $35. Now, you need a coupon. But this is for anybody with or without commercial insurance except for those on Medicaid, and government insurance. I'm going to link up the entire release in the episode homepage. I will be putting the phone numbers, the call center information, pretty much anything you need. And let me know if I'm missing anything at the episode homepage at diabetes dash connections.com. And as always, there is a transcript of the interview you're about to hear. If you are brand new to the show. I'm really glad you found us I hope you continue to listen. I am a parent of a child with type one. My son was diagnosed 13 years ago right before he turned two. And my background is in broadcast journalism. So I hope this is an interview that gives you the information that you would ask if you had Andy Vicari on the phone yourself. I also I should say if you're new to the show that three weeks ago, I was on a conference call with Lilly, and I was able to ask a question about insulin pricing. We played that bit of the conference call last week. And while I do not get me wrong, I do not think that because I asked this question, that is why this change happened. But I think if you go back and listen to the question and answer, where I did ask, why not at this devastating time, during this world health crisis, why not? Do it now? Why not cut the price to $35 or $25? I had pushed for if you hear that question, and then Andy Vicari’s answer, I do think it gives you some context as to what has changed. But he talks about that here as well. There's going to be a lot written about this. There is going to be a lot of information yet to come. What will the other insulin makers do? It's possible by the time you're hearing this, things have already changed. So stay tuned to the website diabetes, connections, calm and follow on Social and we will keep you posted. Here is my interview with Andy Vicari, Lilly's us insulin brand leader. Andy, thank you so much for jumping on the phone on what's got to be a very busy day. I appreciate you spending some time with me and my listeners. Andy Vicari 3:15 Absolutely. Stacey. We're delighted with this announcement and happy to hop on a call with you. Stacey Simms 3:19 The news broke earlier this morning. And you've already got calls coming in. We're only speaking about half an hour after the call center opened up. It sounds like it's already very busy. Andy Vicari 3:30 Absolutely. And we expect that it will be a banner day when we had the press release a little more than a week ago with Dave bricks and some major publications. We had hit an all time high for the calls that we had received in the day and we hope to double that if we can we have it staffed and ready to go. And we want as many people to get us up as fast as possible. Stacey Simms 3:51 You know, we spoke on that conference call in the middle of March about the insulin pricing issue and about many other things and when I am Then about lowering the price to $35, you had a lot of concerns about supply chain contracts, pbms wholesalers, what changed? Andy Vicari 4:12 So we were in the works. So this solution was being prepared. But those back end dynamics are things that we have to work through. So while it would have been inappropriate for me, Stacey to promise it at that time, it was something that we've been moving towards for several weeks now all in response to the COVID-19 crisis. And I think, you know, as well as anybody, but for perhaps the listeners that aren't as attuned to some of the nuances of the drug supply chain, we have to work very closely with our partners and the last thing we would want to do is to create any sort of a panic or a rush, and then have this wonderful program that people can access or insulins. We're delighted that we are shipping out 100%. We have no back orders, we have no issues with our insulin, which is outstanding. So that's it timing is right for this program. But yes, to answer you directly when we did speak, this was something we had in the works. We're trying to get ready for market. Stacey Simms 5:09 Great. I didn't mean to imply that it was as simple as me asking you on that call. But I am curious, you know, is this why it's a coupon? Because you, you have to work through the contracts that you already have. Is that why it's not just a blanket, hey, you go to the pharmacy, and it's automatic. Andy Vicari 5:27 When I say contracts, or when I say on the back end, yes, we do have partners that adjudicate these claims. So for example, when anybody goes to the counter to be able to pick up their insulin, we want to make sure we had the things in place. So those that already have a card, that they are automatically reset to this $35 and it just takes time with some of our third party partners to make sure all of that is set. So that the experience when someone goes to the counter is as promised in the press release. So That's that's really some of the nuance behind it. But the conversations with yourself, the other advocacy groups, they are critically important. And I really love Stacey, something you had just recently wrote about. People speaking up and speaking out. We listen. I know, it's often a case where people are feeling like Big Pharma in general, isn't attuned to what's happening. But we've tried to lead from the front on the insulin issue as literally the heart of who we are and what we're really trying to do. So we always welcome those conversations. Stacey Simms 6:32 You know, the press release doesn't mention an end date as I read it, and correct me if I'm wrong there. Is this indefinite after, you know, we get through COVID-19. What's the plan for that? Andy Vicari 6:45 Yeah, you bet. important question. I think that's on everybody's mind. And what I can tell you is we don't have plans to change this program to turn it off. What we always do is constantly evaluate all of our Savings Programs and other reasons. forward as with legislation that's coming or perhaps going to be in place, it's important for us to constantly evaluate but right now, we have no plans to alter this program in any way. Post COVID-19. We hope we are hopeful for a lot of the legislation that is in the works. But we were I would say appropriately impatient, and not waiting for any of that to change and happen and we need to just get this done and get it done. Now, Stacey Simms 7:26 talk to me if you could about Medicaid, Medicare, the government insurance programs, why are those excluded here. Andy Vicari 7:34 For legal purposes we actually cannot they are not eligible for any coupons with any manufacturer on any product. We've taken other steps Stacy with our half priced insulin so that's a nice bro is the most recent that's out as of last year, and we plan to the middle of this month. are 7525 and quick pin Junior versions of those that are also at half price that helps people that are in those government programs get a much reduced insulin experience. Now we also have and have been running for some time through really cares for anyone that is in any of those federal or state programs, but is that 400% or below the federal poverty level. And to put that in perspective for people, that is somebody that makes a family of four would make 100, roughly $105,000. And for an individual, that is somebody that makes about $51,000. So anybody that at or below those levels, is eligible through really cares to apply for free insulin which, given the rates of unemployment and people filing for unemployment, I think that's a it's a well needed resource as well. Stacey Simms 8:44 So would you recommend that if someone's not sure, someone who is over the age of 65, or was on another government program, another government insurance program, should they just call to find out what they're eligible for because I think a lot of people don't realize that they may be eligible for some discount. Andy Vicari 9:01 Absolutely, you nailed it, Stacey, that is the most important thing. That's why we have chosen to implement this program the low insulin value program through our diabetes Solution Center. Because it is a little bit complicated out there. Sometimes when these healthcare professionals that answer those calls, they can help navigate that. And most of the time those people that call in that think they're not eligible, frankly, are end up being eligible for something. So yes, get them to that call center. And that is the best way for them to get the most affordable experience. Stacey Simms 9:33 I don't know if you can answer this question, Andy. But I assume when you call into the center, that you know you give a lot of information. Does Lily collect that for purposes other than pricing? I mean, I guess there's there are some privacy concerns that I've heard a few people mentioned who have not necessarily called in, but who have said well what happens to that information that I'm sharing Andy Vicari 9:56 it take as little information as possible. For example, but Give a real world example of somebody that's called in as of this morning and wants to access this $35 really influence value program. They'll take name, they'll take a callback number in case they get disconnected. And then for the quickest purposes, if they're willing to give an email address, they'll be able to email them this coupons so that they can go immediately to a pharmacy and start to use it. If they choose not to. We can send it over over mail. But the direct answer to the question is we don't use that information for anything other than to make sure people get the gift the discounts or insolent experience that we can give them. Stacey Simms 10:38 I also had a question that came in early this morning. If it does end, can you commit to giving people enough notice? In other words, you know not, not the next morning we wake up and say sorry, it ended last night at midnight. Andy Vicari 10:54 Sure, understood. So terms and conditions on all discount programs across manufacture. They have to be renewed each year. So this program, which again, as you and I talked about, we don't have plans to turn off in January, one of 2021, people will need to access a new card, so that that's no different than than any other program. So in that timeframe, they would know in calling into the call center, we'll be continuing that or not. But like I said, the most important thing we want listeners to take away from this is, we don't have plans to change this. We always evaluate the external environment as legislation changes. But we know this is an absolutely much needed program, especially since it covers those without insurance. Stacey Simms 11:38 And if that's really interesting, you know, to realize that it will go at least through January and then further as you said, You sound like you're just going to renew it and move forward. You've been in the insulin business and in the pricing arena for a very long time. I'm sure you've heard a lot of angry comments and a lot of concerns why people are going To ask Andy and I'll just ask it for them. Why did it take so long? If this can go on for a long time, I assume Lilly thinks it can stay in business. So why did it take so long? Andy Vicari 12:10 You know, really, for us it's been this isn't a new behavior, Stacy. What I mean by that is we've been looking for different ways, within the rules of the healthcare system today, to ensure that we can get the direct savings to people with the people that are actually filling their prescriptions and not go to some other third party within the drug supply chain. That's why things like standing up the diabetes Solution Center and insulin lice pro launch was so important. It's why we've continued on the back end, which we will continue with our programs where even if somebody doesn't know about this program, yet, they'll still get bought down to $95 or less. But if they have a card that they're already accessing, it will automatically get them down to $35. So the direct answer to your question is we've been at this for a while and we've been coming You need to find different ways. And the last one of the last gaps we saw Stacey was those that have no insurance. And this experience is one that we'll be able to, to ensure that those people that are paying cash or paying full retail price, get the maximum savings. So it's a it's a way for us to ensure that it happens at the right time, which is right now, given everything with COVID-19. And we felt like our other programs that were in place, we're doing an adequate job up until recently, as you can see from all the unemployment numbers, Stacey Simms 13:34 and I'm sorry, that went by quickly pardon my ignorance when you mentioned $95 automatically. I'm sorry, could you repeat? That was Andy Vicari 13:42 sure we'd been running for a couple of years now. programs in the background through a third party called relay health, where it automatically a fewer I go to the counter and say our bill was we're on a commercial insurance and our bill was $150 Unbeknownst to the person at the counter, they would never know that we'll lose doing this. They don't need to sign up for anything. They don't need to activate anything, it just automatically ensures that they pay, right around $100 or less, really $95 is what we shoot for. So that has been happening for quite some time. And it's something that we're certainly proud of to try to give a reasonable experience for people given COVID-19 right now, go ahead. Stacey Simms 14:27 I was just gonna say, is that something that since the person buying it doesn't know, do they have to ask their pharmacist to run it through? Does the pharmacist know about it? Andy Vicari 14:35 They do not. So there's pharmacies that participate with relay health and for those pharmacies that do, it just automatically happens. It's Think of it this way, Stacey, if you were I don't know where your favorite grocery store is. But as a customer, they're probably scan your card and you get some automatic savings. It is exactly like that. The difference is you don't need to do anything as the consumer. It just happens in the back end in our actions with really help In the pharmacy, so, for any pharmacy that participates with really help, that automatically happens unbeknownst to the consumer. Stacey Simms 15:07 All right, let me ask you a pie in the sky issue. do you envision a time with the complicated health system that I know we have in the United States? I know this is not all on Lilly. But do you envision a time where instead of calling to get a coupon instead of thinking Do I really health and you know, scanning my my quote my Vic card at Harris Teeter, that's the grocery store I use? You know, do you envision a time where insulin is just priced lower and we just go get what we need? Andy Vicari 15:35 I do think there'll be legislation that will happen. I think it's it's less about the insulin. I think it's about chronic medications overall. And I think that is to us, the most important thing is insulin easily the front and center conversation around it. Absolutely. Until that day, we're going to continue to push and find ways but I do foresee with chronic medications from legislation standpoint, I think one of the ones one of the things that I'm most excited about is what Center for Medicaid and Medicare has done in their Innovation Group. All three insulin manufacturers have announced that we're partnering with them as of January 2021, to make sure that those health plans that participate, have their their customers pay no more than $35 a month for those in Part D, which is incredibly important. If we rewind to part of our conversation, we talked about the legality and the rules. Right now those people aren't eligible for some of these savings and coupons. But that is a program that would ensure that this $35 a month is for not just commercial, uninsured. Also the Part D That to me is a significant step. Stacey Simms 16:46 Well, Andy, I really appreciate you jumping on when we spoke a couple of weeks ago, you know, we were talking about how a crisis is a time to define what companies are all about. I really appreciate this and I wanted to say thank you to Lily. It's going to help a lot Have people it's a it's a great opportunity to stand up. So we blessed you when it's appropriate. But kudos, and thank you for doing this. And I hope it does continue. But thanks for spending some time with me this morning. I appreciate it, Unknown Speaker 17:13 Stacey, and thank you for what you do for advocacy and helping get the word out. So we can't do it without you. Stacey Simms 17:23 Again, all of the information that we spoke about is on the website at the episode homepage, diabetes, dash connections.com. There's a transcript of that interview as well. If you want to share that with people who would prefer to read rather than Listen, I get it. And as I said before the interview, I do think things are going to change more information is going to come out that sort of thing. And we'll see what the other insulin makers do as well. They usually do follow each other when it comes to price increases. So we'll see what happens now that Lily is offering this coupon and this program indefinitely. It sounds like...
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Cooking Smart - Even Now - with Chef Mark Allison
04/01/2020
Cooking Smart - Even Now - with Chef Mark Allison
Since we’re all stuck at home, here's some cooking advice to help you through. Chef Mark Allison has three boys.. one of whom was diagnosed with type 1 as a baby. He has tips and tricks for us.. starting with: just get started. Mark teaches healthy cooking but isn’t above eating smores with his three sons. Mark currently works with the Cabarrus County Health Alliance teaching needed home cooking skills. He’s been the Director of Culinary Nutrition for the Dole Nutrition Institute and he spent many years teaching classical chefs at the Dean of Culinary Arts Education at Johnson & Wales University in Charlotte. Mark has a new book out Let's Be Smart About Diabetes: A cookbook to help control blood sugar while getting the family back around the kitchen table In Tell Me Something Good – a lot of mac and cheese and a lot of help for someone who has always been giving it. Talk about paying it forward… and back. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript (Rough transcription, has not been edited) Stacey Simms 0:00 Diabetes Connections is brought to you by one drop created for people with diabetes by people who have diabetes by real good foods, real food you feel good about eating and by dexcom take control of your diabetes and live life to the fullest with dexcom. Unknown Speaker 0:20 This is diabetes connections with Stacey Sims. Stacey Simms 0:26 This week, how are you eating these days? Some kitchen and cooking advice to help us through Chef Mark Allison knows his way around the kitchen with a family he has three boys one of whom was diagnosed with type one as a baby. As a professional chef teacher. He says just get started Chef Mark Allison 0:45 getting in that kitchen and making something over the next 30 or 40 minutes and then sitting down eating the food but actually having a conversation instead of everybody upstairs playing Xbox or some kind of games. You're actually in one room. Communicate it and you make them so think that hopefully everybody's going to enjoy. Stacey Simms 1:03 You'll hear Mark's unique story. He and his wife moved to Alaska for an international program back in 1999. And their 14 month old son was diagnosed shortly after that in Tell me something good. A little bit of help for someone who's been giving a lot of it, talk about paying it forward and back, and a lot of mac and cheese. 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 diabetes connections we aim to educate and inspire by sharing stories of connection and in this time, it is so important to stay connected. On this week's show. We are not going to be talking specifically about the corona virus. Rather, this is a show that will maybe inspire you or help you to get in the kitchen at this time when we are all first in our house and I don't know about you, but I've been Looking more than ever, but maybe to look at things a little bit differently, get your kids involved, try something new. I was so excited to talk to Mark Ellis. And we've known each other for a long time. And I've been trying to get him on the show. And it's just one of those. You know, the beauty is in the timing sometimes, because maybe this episode will kind of give you a fun day and some fun ideas to try at a time when boy, we do need a little bit of fun, and a little bit of inspiration. So there will be more information about Mark's cookbook. Let's be smart about diabetes a little bit later on. And I would urge you if you're not already in the Facebook group to please join that it is diabetes connections, the group because I'm going to be putting some of the recipes and notes that he gave me into the Facebook group, I cannot put them in the show notes. It's just a format thing. So I apologize for that. They will not be on the episode homepage, but they will be in posts in the Facebook group. So head on over there to that. And just another quick note before we get started. Thank you to everybody who continues to buy my book, the world's First diabetes mom, if you need a laugh in these times, maybe it's there for you. I've heard from people who are really enjoying it right now who have the audio book to who maybe didn't have time to listen before, although I mostly listen to audiobooks in my car. So my audio book and podcasts consumption, frankly, is way down right now. Because I'm at home, I'm not commuting. I'm not driving anywhere. But I do listen when I clean and do laundry and stuff like that. So maybe that's it. But thanks again, the world's worst diabetes mom is available at Amazon. It is in paperback, Kindle and audiobook. You could also buy it over at diabetes, connections calm but frankly, Amazon's probably the easiest right now. And I was so happy to be involved in the children with diabetes virtual conference that happened recently. I bet you can still find that online. I was able to take my world's worst diabetes mom presentation for them. Of course, as you know, like many of you, I was planning to go to lots of diabetes conferences in the last month and this spring and it's all on hold right now. So a little bit of online goodness. For you, I will also link up the children with diabetes conference which had tons of presentations in it. I think it's going to be a real resource going forward for a lot of people so I'm thrilled that they did that. All right Mark Ellison coming up in just a moment but first diabetes Connections is brought to you by real good foods. We got a sample of the real good foods ice cream. They sent it to us a Benny and I did a Facebook Live. I think it's almost three weeks ago now. Wow. About what we thought our reactions and I gotta tell you, I have been enjoying the real good ice cream since then. It is so delicious. It is a lower sugar ice cream that tastes like ice cream. You have probably had ice creams that are lower carb that tastes kind of chunky and chalky. And there isn't none of that I sat down. I shouldn't say this. I ate almost the entire pint of the mint chocolate chip. I stopped myself but it was going there. So check them out. You can find out more at really good foods calm. They ship. Yes, they're the grocery store for you. Right now I know a lot of you and us included group looking at home delivery, and you can find all of their stuff online. They'll deliver it for you some great shipping deals as well. Just go to diabetes, connections comm and click on the real good foods logo. My guest this week is a terrific chef, who as you know here teaches healthy cooking, but isn't above eating s'mores with his three sons. Mark Allison works with the cabarrus County Health Alliance, a local county to me here in North Carolina teaching needed home cooking skills. He has been the director of culinary nutrition for the dole nutrition Institute, and he spent many years teaching classical chefs as the Dean of culinary arts education at Johnson and Wales University here in Charlotte. Yes, Johnson Wales does have a campus here in Charlotte. One of Mark's sons was diagnosed with type one as a baby and his wife was diagnosed with stage four cancer in 2008. Now she did pass away But as you'll hear it His wife was able to live longer than anybody expected her to, which he says really made him a believer in the power of a plant based diet to fight disease and prolong life. Mark has a new book out called Let's be smart about diabetes, a cookbook to help control blood sugar while getting the family back around the kitchen table. We are putting recipes in the Facebook group, as I said, and of course links in the show notes. Here's my talk with Chef Mark. Allison. Mark, thank you so much for making some time for me. I know you've got all your boys home. And while we're not, I guess we're not doing much these days. It still seems like the time is filling up. But thanks for being here. I appreciate it. Chef Mark Allison 6:40 They see You're very welcome. And it's a pleasure to be on your show. Thank you very much. Stacey Simms 6:43 I'm excited to talk to you. We've known each other for a long time. I was thinking I think we met possibly the Johnson and Wales cooking competition of some kind where I was an extremely unqualified judge. Chef Mark Allison 6:59 The good old days here In the good old days, Yes, I remember you there and you were totally qualified for the position to be church exceptionally well because I enjoy eating. Stacey Simms 7:11 So there you go Chef Mark Allison 7:12 to nature, you know, in my opinion chef is fitted very nicely into my lifestyle, because I love to eat. I love it. Stacey Simms 7:19 Well, you know, I want to pick your brain as long as we have you to talk about how to try to eat well, as long as you know, we're all stuck at home. But let's talk about let's talk about diabetes. First, let's get your story out because I know everyone already hearing you knows that you are your native to North Carolina. That's a beautiful Southern accent that you Chef Mark Allison 7:37 see I was born in Charleston, South Carolina. People get that mixed up all the time. I'm actually from a little town called at Newcastle upon Tyne which is in the northeast of England. And I grew up there and the place where the usually state calls from Newcastle on Newcastle brown ale on Newcastle soccer club whether the three things that people read knowing you're comfortable, but that's where I was born. I moved to South Wales and lived in South Wales for 10 years, traveled all over Europe and in 2004 landed in Charleston, South Carolina, lived there for yet then moved up to Charlotte and I've been in Charlotte now 15 years and absolutely love living in Charles. That's great. Stacey Simms 8:20 All right, so but your your diabetes story your son's really starts in Alaska. Can you tell us that Chef Mark Allison 8:26 I was one of 30 people fit by the Fulbright teachers Experience Program, which is a program that started after world war two to get the world together through education. And teachers apply and they are asked to go to different countries around the world. And I was asked to go to America and I thought Yes, this is going to be fabulous. being brought up in the 70s in the 80s. On Starsky and Hutch and streets of San Francisco. I naturally thought I was going to California, but I would have 500 teachers that apply to come to Europe, there was only one chef and he did not live in California. He actually lived in Anchorage, Alaska. And we actually turned down the position first because my wife said we are not taking a two year old and an eight month to Alaska. So we turned it down. And then Glen, the teacher rang me over to him and said, Look, can you do me a favor? This is the fourth year I have applied. And my daughter has won a four year scholarship at Oxford University and this is her last year. Can you please take the position so we can be with her for the last year that is in the UK. So we decided to move over that and we actually had an absolute fabulous year. But while we were living there, Matthew, my youngest son at the time, who was it month when we arrived, when you go to the age of 14 months, he became ill, and we took him to the doctors and the doctor said he just had a bad case of the flu, he'd be okay. And about a week later, he had lost a tremendous amount of weight. He was drinking a lot of fluids and just happened to be Tom My brother on the forum that weekend who is a type one diabetic and has been since the age of 15 years old. And he said, I think he may be a type one take him back to the doctor's. So we took Matthew back. And we had a young doctor, she was lovely lady. But she said, there's no way as a type one diabetic it normally it's going to be about seven or eight years old. He's only 14 months. And she just said, No, I'm not testing as blood. So of course, my wife who was there, like any mother has said, well, we're not leaving your office until you actually test his blood. So there was a bit of a standoff for about 30 minutes. And then she tested this blood and within 30 minutes, Matthew is in intensive care and he was there for the next seven years. And his blood sugar's were so far through the roof that we were told that we had left her office and went to him more than likely would have been in a coma that night. So we were exceptionally lucky. And the doctor from that stage could not do enough for us as he was at his bedside every day. And as you know, Life changes. So we decided to look at food as sort of medicine and changed all our eating habits for Matthew. So from the age of 14 month, Matthew has been on a really healthy diet, you know, just turned 22 in December, and he's in great shape, but he's at college at the minute, and he's doing exceptionally well. But that's where it all started back in 1999. Stacey Simms 11:24 And I think it's worth repeating for people who are you who have children who are newer diagnosed or maybe have been newer diagnosed themselves. There really was this thinking because the same thing happened to us, Ben, he wasn't yet two years old. And they said, Yeah, under the age of two, it's Yeah, it'd be type one. There was this thinking and I don't know if it's just that they're getting better at it or there are more cases and infants and babies, but it has changed a lot thanks to people like you push an educated Oh my goodness. Chef Mark Allison 11:51 You know, it is frightening. Because you've got your doctor and you just think they've got all the answers. And but something like Type One Diabetes is you know, in Now it's becoming more and more people become more and more aware. I remember when my brother was diagnosed that he was in hospital for six months because they were unsure of actually what it was. And the unfortunate thing for my brother, he was 15 at the time, so he was nearly an adult in England. And he was actually on a cancer Ward for six months, and was frightening with him was he was watching people that were dying around him. And unfortunately, that marked him for life. He is now nearly 60 and he's in good shape and he's healthy. But he still remembers them times where people were actually dying around them because they thought he didn't have diabetes for 30 years cancer at the time, but times have changed and I think it's a lot more easy to diagnose now. And we've got great doctors, people like that more fonder. Well, it's just amazing. I think now we can rely on the medical professionals to diagnose a lot quicker than what was said 20 years ago. Stacey Simms 12:58 And when you're Your son and your brother must have had some interesting conversations about not only the difference of diagnosis, but the difference of treatments. I mean, I'm so your brother is doing well, because I can't imagine. Chef Mark Allison 13:11 Well, my I can remember my mother have sterilized his syringe and needles every night. Because the other days, whether we're like the one inch long needles, and you could reuse them, and the syringe was reused, and he was getting injected twice a day, now he's on the pen. So you've worked a lot better for him, but I can remember those days and the previous thing, and testing was blurred and then cleaning the syringe and countless cops. It was a difficult time for my mother. I know that. Stacey Simms 13:44 I feel you never want to say we're lucky with diabetes because it still stinks. Yeah, but also to make me grateful for insulin pumps and pens. My good. Chef Mark Allison 13:54 Yeah, my back muscles just changed over to a new pump. The Omni pod and you know, he He's been on the pump for at least the last 12 years and what a difference others made. You know, we as parents, I'm sure you have the same feel a lot easier that he's on something that basically regulates everything. And as long as he tests his blood, he knows when he's either going to go low, go high. And these instruments these days are just amazing. Stacey Simms 14:21 It really is. I feel really grateful. Yeah, let's jump in and let's talk about food. Because not only are you a renowned chef and a you know, an educator of other chefs, but now you work to educate the public which I just think is absolutely amazing because we need all the help we can get mark, as you well know. First of all, let me let you explain what it is that you do you work for the Harris County Health Alliance, which is a nearby you know, county to mine here in the Charlotte, North Carolina area. What do you do right now in terms of teaching the public right back to mark answering Question, but first getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with one drop. They offer personalized tester plants. Plus you get a Bluetooth 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 prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of one drop lubes 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 comm and click on the one drop logo. Now back to mark and he is answering my question about teaching people the very basics. Chef Mark Allison 15:55 I have a wonderful job and it's funny how I started the shop at 16 and I printed with French cuisine, and lots of thoughts, sugar and salt, and nobody counted calories or anything. And now I've went closer to being a healthy chef. And I tried to teach people how to improve their diets. So I work for the cabarrus Health Alliance, which is based in kannapolis. And my job is a fascinating job. And the fact that I go out to the general public, I go to schools and hospitals and churches, and I also do cooking classes at the cabarrus Health Alliance, and I try to teach people how to cook because if you think about it, Stacy, cooking is a life skill, but nobody knows how to cook these days. What I noticed just last week, when the food stores were out of canned goods and frozen goods, actually the produce section was still full. And my advice to anybody, especially at this time with the corona virus is eat healthy by eating as many fruits and vegetables as you possibly can because they're just packed full of vitamins, minerals and phytochemicals. So my job at the Cabal ourselves Lyons is basically trying to teach people how to cook and choose better food choices, and not so much processed food, not so much food that is packed with fat, sugar, salt, and try to get a healthy balance. You know, it doesn't all have to be healthy. But if you do choose healthy options, you'll feel better. Your health will improve and it'll fight off viruses. Stacey Simms 17:23 So when we're all stuck at home and we have this mentality, which is this is very unique, obviously. Yeah, I mean unprecedented. But now that we're stuck at home, what would your advice be? Because I did the same thing I'll be honest with you when I went to the grocery store a couple of days ago, I picked up you know, some apples some oranges, but I wasn't I was thinking hunker down. Yeah, I bypassed a lot of the fresh fruits and vegetables now that it seems and again we're as we're recording this, it seems like the grocery stores are gonna be fine. There's no problem...
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Stacey to Lilly Diabetes: "Why not be a hero?"
03/31/2020
Stacey to Lilly Diabetes: "Why not be a hero?"
In mid-March, the folks at Eli Lilly held a conference call for diabetes writers, bloggers, and podcasters. The call was to talk about Lilly's participation in the new Part D Senior Savings Model, as well as general updates about our insulin affordability programs. After listening to some of the remarks, Stacey asked about the price of insulin and suggested a bold way forward. You can listen to what she asked, and the response here. Transcript is below. Please note: there were many other advocates on the call - this excerpt only features Stacey's question but she was not the only person pushing for change. In particular, Amy Tenderich of DiabetesMine was also vocal about lowering the price of insulin. Links to insulin assistance programs: ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Transcription: Stacey Simms 0:06 Hey everybody, welcome to diabetes connections. Although this isn't really going to be show today. This episode is more like an audio excerpt. I'm Stacey Simms, of course, and we will have a regular episode with all of our usual segments dropping as soon as later today, or more likely tomorrow. I debated putting this one out. The production quality isn't exactly as it always is, because I'm doing a quick turnaround here. And it isn't usually how we do things, but I think it's important. So here's what happened on March 16, the folks at Eli Lilly held a conference call for diabetes writers and bloggers and podcasters. The press release said during the call, you'll hear more details from Andy Vicari a leader on the Lilly diabetes insulin team about our participation in the new part D senior savings model as well as general updates about our insulin affordability program. grams. That was the PR quote, these calls are rarely groundbreaking. They do them sometimes they'll put out a press release that says largely the same thing. But they do give you the chance to speak directly to the people who help mold the policy. And I do try to join when I can. I am so glad I did this time. The PR team welcomed us and told us that in addition to the planned remarks, Mr. Vicari would speak to the company's response to the Covid 19 situation. It became pretty clear though, that this really just meant he was going to go through the already published ways to get coupons and use the Lilly call center, you know, that kind of thing, which I will link up in the show notes along with other ways to try to get a break on insulin prices from all the manufacturers. If you're a regular listener, frankly, it is the usual stuff as far as I know as of this date, which is March 30th 2020. Nothing substantially new has been announced. It's important to note and you'll understand why when you hear the audio From the call that I'm going to play, when you hear my question, there have been no widespread reports of people not being able to get insulin. There isn't a supply problem. I asked a little bit about that, because I had just been contacted by a woman whose local pharmacy wasn't carrying what she needed. But that was a local situation, and as far as I know, has since been resolved. When it became clear that they weren't really doing anything new for what is an unprecedented world situation, a world health crisis, I decided to ask another question. I asked the folks at Lilly, why not? Why not do something very bold, very different and really show us what they stand for. And I want to play you that Please come back around at the end for an important announcement about what you can do to make your voice heard on this issue. Here is the unedited version of that portion of the call. The gentlemen answering my question is, as I said earlier, Andy Viacari, senior director, diabetes US insulin brand leader for Lilly: (Call begins) All right, I'm going to ask this question and I understand it might not be a very popular one. But, again, looking ahead to as you said, there will be things in place for people who are, you know, losing their jobs who are poverty level, that sort of thing. In a time of really what is very much uncertainty, understanding that people with diabetes cannot live without insulin, as you know, why not be a hero in the space and say right now, that Lily will cut the price of insulin to one level to $35 to $25. Why not let people fill prescriptions for whatever they are written for from their physician for a price that while would obviously be very dramatic, very different, would help people around this country feel better about the one thing that they are? I can't, I can't. I'm not exaggerating this, you know what we are in this community all of the people on this call one thing that people are devastatingly worried about, there are already reports of people who don't have insulin in their pharmacy. They're very, very isolated. I have no idea what brand they are. But this is something that's on the minds of everybody was type one diabetes and many people with other types. Why not consider something that dramatic, even if it's temporary? Andy Vicari 4:32 Yeah, appreciate the passion and and some of the frustration in the question, I think it's important to acknowledge that, you know, what I can say from a human log standpoint. You know, similar to any other time, if we cut that price, could that disrupt the supply through our other supply channel partners that certainly we have contracts in place with them for a certain price so it would go beyond our ability just to cut that price. We would be having to negotiate with them. So certainly something that I think is feedback for us. I like the way you framed it. Why not? Maybe not the hero I think yourself and the folks that have any type of diabetes is the hero in this case, but we can play a significant role. What I what I will say is, we are constantly from a leadership standpoint, it's not a an overstatement to say, Mike Mason in our executive committee is constantly looking at for things we can and should be doing this time. So while I can't sit here and say it is something that has been considered and being planned, I think these conversations are further fuel for those types of interventions at a at a at an enterprise level. What could we be doing around this space? And it's important that I'll make sure that I continue to come back to my leadership, as we close this call and have those conversations What else could we be more vocal about? What else could we come out and announce to help people in this time and it may have all Just given the circumstances with the country and what's happening. So what what I can't promise you is that there'll be an immediate reaction. But what I can say is we're always looking at these things. And the steps that we've taken, the quickest way for us to do that would be with our authorized generics. Again, we have similar contracts the same contracts in place with our, with our wholesalers and with our pbms and payers, so we would have to be renegotiating with them, and they'd have to be okay with that. Now, you could argue that they they can and should be, it would be very difficult for them to say anything other than that's a good idea, but I can't comment for others in the supply chain. I know that's perhaps not the exact answer that you'd like but it's a it's a real answer on we are always considering these other options. And by cutting our price just automatically, we would put at risk those folks that are stable on our products with just not getting covered by the P ends and payers that have us on today. Stacey Simms 7:00 I do appreciate the answer. I just think that - just a bit of an editorial statement, you know, a crisis is a time to define what your company is all about and what an opportunity, I really hope you guys consider that and let the pbms and the others say no, I mean, let's give them the chance to, to not step up to the plate. And let's see what happens. (end of call) But do you think will Lily take any bold steps? I know most of you are skeptical, but you never know. And as I said that was an unedited portion of the call. There were other diabetes bloggers and writers on the call asking their own questions that hat tip to Amy Tenderich of diabetes mine for seconding. My thought and backing me up and and pushing ahead on that too. But what can you do? Is there anything right now to take action on Patients for affordable drugs. A group we've talked to here on the show before, has put out a call for all three insulin manufacturers to lower their prices right now, in response to this health crisis. There's a letter it is being released on Tuesday, March 31. I've signed it virtually, of course, and I would urge you to check it out and sign it as well. I'll link it up in the show notes and I'll share it on social media once it is live. Let's keep pushing on this issue. It is in times like these, that companies truly show us what they're about that big change can happen. And as Amy said on the call, that it's a time for disruption. It The time is ripe. So make your voice heard. Let's do what we can. I know a lot of you already, as I said are not optimistic, but we cannot give up. Thank you for tuning in. Regular episodes are coming your way the next one will be out as soon as tomorrow. I'm Stacey Simms. Subscribe to the show on any free podcast app so you don't miss out or just come back the way you found this audio excerpt. Thanks again for joining me Unknown Speaker 9:09 Diabetes Connections is a production of Stacey Simms media. All Rights Reserved all wrongs avenged. Transcribed by https://otter.ai
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Stuck At Home? Share Your Voice: A Community-Sourced Episode
03/25/2020
Stuck At Home? Share Your Voice: A Community-Sourced Episode
We asked and you answered! Listeners sent in their audio to let us know what's going on in the diabetes community right now. It's a tough and stressful time, but you're not alone. Listen to stories and thoughts from people from the US, Saudi Arabia(!) and of all different ages. Truly a time for Diabetes Connections. Want to send in your audio? ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes five people who have diabetes by Real Good Foods, real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Unknown Speaker 0:20 This is diabetes connections with Stacey Sims. Stacey Simms 0:26 How is everybody doing? I'm not exactly sure how to even start these episodes anymore. We're not really doing regular episodes, full episodes of Diabetes Connections. But I didn't want to wait until I'm doing a full episode or a regular episode to let you hear what is in this one. So hi, I'm your host Stacey Simms. You know that and just like probably the vast majority of you almost everybody listening. I'm home. I'm very, very grateful to be home with my family. My daughter came home from college and you know, my son's at home. school my husband often works at home. In fact, he almost always works from home unless he is traveling for business. So he's either on the road or in the house. And I'm so grateful that he hadn't been traveling a lot this year already. And you know, we're very fortunate that he can work from home. So what have we been doing? Well, I will share with you I may have mentioned this on a previous episode, we moved recently, just across town, not the best timing because I do have a house to sell now, but we will be fine. We will figure that out. But in the meantime we have a house just set up we have lots of things to unpack. We have lots to keep us busy. We spent yesterday cleaning the house we've been in for about 10 days. And we just did the regular type cleaning that you would do you know dusting laundry, that kind of stuff. I can't say it was a lot of fun, but it was certainly something to do and we realized we were missing a few things including a broom. Apparently our broom did not make it my husband said it was trashed on the way out of the old house. So add broom to the list of things that we are picked up at the grocery store when we had to go out the next time, it's kind of a weird thing to have in your grocery store list. But you know, we don't want to be running around town to different places. I don't even know what's open right now. Got our broom. So my husband who is the much more fastidious cleaner in the family was very happy with that. Our dog is very happy that we're all home. I think like most dogs right now, she's pretty confused as to why the heck everybody is in the house all the time and why we are walking her and living with her. My daughter and I have started doing yoga. we're grabbing a YouTube channel and just trying out some different yoga classes online. I've been taking yoga in person for about a year and a half. But I'm certainly not very good at it. But it's fun to do with my daughter. But our dog is super confused and she's coming in there with us and wondering why we're on the floor and was very concerned. But now she's calmed down. She just kind of lays there with us while we do yoga. And Benny I think like most 15 year old has been keeping really busy on his phone, facetiming all his friends. He was taking these long bike rides. Before everything got shut down, he was by himself. You know, he wasn't with other people. But he's staying home now. And I think that's why. So that's our situation. But I wanted to share more of your situation. And that's what this episode is all about. A few days ago, I put out a call I, you might have seen the graphic, I put it out on social media, and it said, stuck at home, share your voice. And I really wasn't sure if anybody would respond, right? I was trying to make it easy. Just use your phone and tell me what's going on in your world. I did put out a few prompts. I'll talk about that in a moment. But a bunch of people sent in their audio and that's what this episode is going to be just a short episode to share some other voices from the diabetes community. And then in a couple of days, I will be putting out another episode our next full regular episode, whatever I'm calling them these days. I'm excited about that because I was able to talk to just a great guy, a chef with a child with type one he's an adult child is type one now, but he was diagnosed very young and Mark Been a chef his whole career. And we talked about what are we cooking now that we're stuck at home? It was a really fun interview. And I'll be sharing that in just a couple of days. I don't know if you can hear it, but I feel like my voice is not that great right now. It is allergy season here. I mean, it's always terrible. And then, you know, I feel like if I'm coughing or sniffling, gosh, you know, I mean, I'm just home, there's nobody to look at me, give me a nasty look or worry about me, but it really is just just allergies right now. So I apologize if you're hearing any of that in my voice. And if you're going through it, you know exactly what I mean. We're just you know, we're all worried we're all on a bit of an edge. So rather than hear from me the whole time, let's get to the people who sent the audio in. Let me just set this up a little bit. Some of the audio here is great. Some of some of the audio here is as you would expect, you know, people just talking into their phones. There's some homes and some buzzing, that we were not able to take out and that's okay. I was just hoping for some real voices and some real feedback. back. So I do hope you'll listen. None of these clips are especially long, but I think they give really good insight into what we're all going through at the moment. So we are starting with Molly Johannes she was diagnosed 22 years ago. She lives in Massachusetts. I'm smiling because I have met Molly. I've been fortunate enough to be at events with her. She has a blog called hugging the cactus. And I mentioned I had put out some prompts and some questions. One of which was, what is it like knowing that so many people with diabetes are stuck at home right now? Here is Molly answering that question and more. Molly 5:37 And I have to say that I'm finding it a lot more unifying than isolating. What I mean by that is, it's really nice to go on to all of my social media channels. And for the most part, I'm seeing a lot more positivity than negativity. A lot of people are coming up with different ways to stay entertained at home, whether that's going outdoors and enjoying nice weather when it's around. Or if it's staying inside and pursuing hobbies or spending more time as families, it makes a big difference. I think in my mindset just to see something other than the news, you know, certain social media sites, you kind of log on to them. And it's nothing but a barrage of like what's going on in the world right now. And while it is super important to stay informed, it's also important to focus on mental health. And I think that distractions are one way to kind of make sure that mental health is not ignored. It's really nice to just be able to talk to others and know that we're all feeling the same way right now. So with that said, I'd like to share some of the things that I'm doing to stay busy. So when I'm not working, I am lucky enough to work a job remotely. So that's something I'm very grateful for. So when I'm not working, I am watching TV, watching movies, you know, typical things like that, but then I'm also pursuing hobbies that I don't normally have enough time for, whether that's knitting or reading some new books or you know, just spending some more time I'm working on my blog, which is important to me. And I find that a lot of the times Monday through Friday, it's really hard for me to focus on certain aspects of managing my blog. But now that I'm, you know, spending a lot more time at home, I don't have a commute, things like that, it is nice to be able to work on it a little bit more. But besides that, I am just spending time with my dog making sure that I'm connecting with my friends, you know, all of my group chats, we're just kind of checking in with each other on a daily basis. And I'm thinking of doing a couple of other things to really just promote the feeling of togetherness. So with some of my friend groups, that's probably going to be a couple of virtual sleep overs that we've talked about. We're discussing certain movies that like we can watch together as a group. So that would be really fun. But I'm also thinking for the diabetes community. Like it might be really cool to do a virtual meetup slash Hangout, and I don't know I think I'm gonna look into that and hopefully come up with some dates that might work for people get a whole bunch of people on camera and maybe we can just get to know one another and play games you know, just things that will keep us going. That will Keep conversations going and reassure people that they're not alone right now. That's the big message that I think it's important to bear in mind. So yeah, with that said, Everyone, just stay healthy be well and don't forget to take care of yourselves and keep mental health a priority. Stacey Simms 8:16 Thank you so much, Molly. It is great to hear from you. I really appreciate it. Okay, next is Doug. He is from Florida. He was diagnosed when he was 15 years old. He says he's 27 years into it. Now. He is currently finishing his dissertation he sent in his audio and this you'll understand why I'm saying this one. You hear him on March 17, which was the day of the Florida primary. So he talked a little bit about that. I did not include it all because it was very important to that date, but that's what he's talking about voting by mail. So thank you, Doug. And here's what he had to say. Doug 8:52 I am doing fine. It just so happens that I am a bit of a socially awkward introvert Bert, and the kind of self isolation and social distancing policies that have been recommended by the Centers for Disease Control and Prevention. These are things that come quite naturally to me. I don't spend a lot of time in crowded environments and I'm not a touchy feely person. I hope you all will continue to stay safe, wash your hands, don't touch your face or other people in the future. And consider using some social distancing practices in your ordinary life outside of this type of pandemic situation. For example, mail your vote, mail your ballots, and I hope everyone out there is taking care of themselves. Stacey Simms 9:53 The next bit of audio came from Saudi Arabia. I was so surprised and really Just pleased to get this. So Sarah, who lives in Riyadh city, thank you so much for sending it in. She was diagnosed in 2004. And she makes a really good point about how everything around us seems to have changed except for diabetes, Sarah 10:15 to all type one D nation. I'm so happy today that everyone can hear me through this podcast. I'm sada. I have been living with Type One Diabetes since 2004. And from Saudi Arabia, I live in Riyadh city. And currently we're living in a very, extremely and exceptional situation. The whole world literally is facing the same problem of a smooth, tiny virus that changes all our meanings of life. I've been questioning myself the last two days. What are the essential things in our life? What do I really want to do? If I don't have any plan today to go to, to study, or to go to visit, what's add stress to me is living with type one D has no No, no break. So I kept saying to myself, everything has stopped. We stopped education. And we have been learning now not really stopped education. I mean, we have stopped going to schools or universities, but we're learning now through virtually and everything we're doing now is virtual, except diabetes. Nothing has changed about it. Every day. I check my BG every day I monitor my CGM every day or every three days I changed my pump site. So everything has changed except my type one D So I looked at myself and I questioned myself, the way we deal with type one D really shapes big Big, big part of our lives and really need to make sure that the way we approach and you will type windy, really healthy, and guide us toward better control. And I'm so happy to share my thoughts with you guys. I was trying to be as much as continious. Thank you Stacy for this amazing opportunity. And I want to say thank you, everyone, and hope you stay safe and healthy. And thank you very much. Thank you, Sarah. Stacey Simms 12:37 All right. This is Michael and a lot of you regular listeners who are also on Twitter probably know Michael without really knowing him because he's very active on Twitter. He's MTL 613 and when I heard him say that I was really excited because I we've been following each other for a long time now, but of course I've never heard him. He was diagnosed with type one at the age of 420 years. ago, he starts out by answering that question about knowing that the diabetes community is out there right now, even as we feel very much alone. Michael 13:12 And I think that's a very important thing. Generally, for me even without, you know, this whole situation, to know that there are people out there who are going through the same or similar things that you're going through is very important to that you don't feel alone. And it's even more important now with this whole virus situation and, and a lot of people, myself included, are trying to stay home and avoid direct contact with other people. So being able to connect over social media and in different ways and to see that other people are doing the same things you're doing even now is even more important than usual. Maddie 13:54 Hi, my name is Maddy. I'm from Arizona, and I'm 14 years old. Mandy 13:59 Hi I'm Mandy from also Arizona. My daughter was diagnosed about a year and a half ago. So Maddie, what is one good thing about being home right now? I think Maddie: 14:11 one good thing about being home right now is that it's easier to control my height a little bit better, and catch my lows. Because when you're at school, you're mainly focused on your work. And then you always hear though, beeps and alarms and then it freaks everyone out and embarrasses you while me. And so it's sort of nice to have it at home and we can control it and yeah, okay. What is one thing your parents do that actually helps you with diabetes? Well, um, they do of course, everything and I love them so much, but my main thing I guess is that my mom especially makes food that is easier on my blood sugar and dinners that coordinate with like, how Having good blood sugars, and it also helps our family in general because she has celiac. And that's hard to have, as you know, eating too and just keeping family healthy. Mandy 15:13 Yeah, we are watching our carbs a little, a little bit. It helps both of us. Yeah, for sure, was a diabetes or community event canceled that you plan to attend. Tell us about it and what you were looking forward to. Unknown Speaker 15:27 So one event that was cancelled was the jdrf walk. And I was diagnosed a year and a half ago. And one of the first things we did was go to the JRF talk. And it was just really nice to see that there are so many other people that you know, we're going through the same things as you and that I always love to see and I made a lot of friends and camp diabetes camp has really helped that and so I would be really missing out on seeing more of that, I guess. Unknown Speaker 15:56 Yeah, but it hasn't been canceled, right? It's just it's a Virtual walk now. Unknown Speaker 16:01 Yeah. So it was still having virtual walk and of course will still Unknown Speaker 16:05 attend, Unknown Speaker 16:06 but it's just different than, you know Unknown Speaker 16:08 in person and we're waiting to hear about camp or keeping our fingers crossed cross cross capsule on. We'll see that was one of my favorite ever things and Unknown Speaker 16:20 of course when you're newly diagnosed it's you get a first step in but it was just one of my amazing most amazing things that have ever experienced. So Absolutely. Stacey Simms 16:32 Okay, thank you. Big thanks to Maddie and Mandy, I appreciate you sending that in. I am thrilled to hear that you are still cooking healthy and doing what you need to do. I'll be honest with you. We have a talk in my house the other day about eating and it was basically about how well we don't have a house full of junk food. But how we're not going to police each other because there's enough stress right now and if somebody wants to eat a big cheese knows, you can go ahead and eat a bag of Cheetos. I will say that Benny is probably eating the best out of all of us right now. He has some wrestling goals that he is still keeping an eye on and he's doing great. But the rest of us might be a little bit on the track to game the unknown about the freshman 15. But the quarantine with what goes with that. quarantine? 15? I don't know. I'll keep you posted on that. Big thanks to everybody who sent in their audio. I know that's not easy to do. You know, even if you're bored, and you think, Oh, this is gonna be a way to pass the time. It's still hard to open up your phone and press record and then just talk and share your thoughts and then hit send. You know, I get butterflies every time I do a podcast episode. So I can't imagine what it's like for everybody just kind of talking and sending their audio in big, big, big thank you. If you'd like to do this again, let me know I'll put out some different prompts. Because I'm so thrilled to always hear more stories in the diabetes community. Everybody's story deserves to be told. Everybody has something to say we can all learn from your experiences. So stuck at home, share your story. We'll keep doing this if you'd like. I really enjoy hearing from you. You can refer back to the original blog post for how to do this. It really is as easy as opening the voice memo app on your phone. Every phone has something like this, recording something quick and sending it in. As you listen. I know you've heard some different backgrounds there it is better to go to a quiet background if you possibly can. some suggestions, a closet is great. Your car is a great little studio, a bathroom, you know any place in your house that is kind of small and quiet. But we will take as you here, we will take what we get because to me the message is so much more important. And yeah, I cleaned all those up. I can edit those out and things like that. And john Buchanan, of course, my editor really does the magic there. So we want to hear from you. Maybe it's even just an activity With the kids for a few minutes, thank you so much for joining me for listening regular episodes different episodes more Facebook Lives Who the heck knows what we're going to do is we're all stuck here at home. But thanks for sharing your story. I'm Stacey Simms, and I'll see you back here for our next episode. Benny 19:20 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
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Pediatric Endocrinologist Dr. Mark Vanderwel Answers Your Questions About T1D & Covid19
03/24/2020
Pediatric Endocrinologist Dr. Mark Vanderwel Answers Your Questions About T1D & Covid19
Atrium Health doctor Mark Vanderwel answers questions on the minds of many parents these days. We will be adding a transcription later today. Quick turn around on this episode! If you saw the original Facebook live, skip ahead 17 minutes - it dropped out after some audio issues but Stacey & Mark picked it back up again, off of FB. You can ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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 real good foods real food you feel good about eating by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:19 This is diabetes connections with Stacey Sims. Stacey Simms 0:24 Hey everybody, welcome to another episode of the show. So glad to have you here. I hope these episodes are helping. Today we are talking with a pediatric endocrinologist starting off by talking about Covid 19, of course, and things that people with diabetes specifically type one needs to keep in mind but then going down the line of listener questions things that my local Facebook group chimed in with things that the diabetes connections group chimed in with. Because if you're not seeing your endocrinologist for longer than expected, which is the case for a lot of us kids and adults, what should you You'll be doing and that's a lot of what we talked about what to do in between how to make sure that you are taking care of what you need to take care of some things you might not have thought about. And just a great chat with Dr. Mark Vanderwel, this was originally done as a Facebook Live Alright, that's only half the truth. This was originally done as a stream yard which is a an audio and video hosting system hosted Facebook Live, which crapped out halfway through and then mark and I jumped onto zoom and record it that way. So the whole video I kind of stitched it together. The whole video is up on YouTube, on diabetes connections there. It is also on our Facebook page. And here is the audio. That's what we're running is the audio of the initial Facebook Live and then everything that you didn't hear. So if you watch the Facebook Live already, the new stuff is about 17 minutes in from the beginning of the interview. If you want to skip ahead, I'm not coming back at the end of the interview. I do want to say, though, that I appreciate all of the messages I'm getting about, you know, putting out episodes. Look, we're all looking for things to do at our homes. We're all looking for good, reliable information. I am hoping to do more episodes like this more zoom Facebook stuff. So let me know what you'd like to hear. I've also been collecting audio from you from people in the audience. And I'm going to be releasing that episode and kind of figuring out how to use that great audio people just keep me posted on what's happening in their homes and what's on their minds. So I'm not really sticking to a schedule. And I guess what I'm trying to say is, I'm sorry, if you were expecting every episode on Tuesday, and sometimes on Thursdays like we normally do, but I don't know about you. I've already lost all track of days of the week. So we're just gonna put out episodes when they're ready to go. And if you want to still listen on Tuesdays, that's awesome. If you want to let me know that that is or isn't working for you. That's great, too. I just think we all need to be here for each other in these wild times. Thank you so much. All right, so here is my talk with atrium health Dr. Mark Vanderwel, welcome to everybody who is watching. I'm so glad to have you with me for this little bit of an unusual circumstances bear with us. This is the first time I've done something like this. I am Stacey Simms, the host of diabetes connections and with me is Dr. Mark Vanderwel, a pediatric endocrinologist here in the Charlotte, North Carolina area with atrium Health. Dr. Vanderwel. Thanks for joining me, Dr. Mark Vanderwel 3:26 Stacey. It's an honor as always, Stacey Simms 3:29 well, we should say before we get going, we do have some disclaimers. But the very first thing in full disclosure that people need to know is that this is my son's endocrinologist and I've known Dr. V, as I've called him many times on the show and in my book for more than 13 years now. So we've never done an interview. Dr. Mark Vanderwel 3:48 Yeah. At least recorded interview for for diabetes connections. We did some back in your radio days. Oh, that's right. Stacey Simms 3:56 Yeah, I thought you were implying that I like interviewed you when I All right. Dr. Mark Vanderwel 4:02 So it has been a long time since we've communicated it never on this platform. Stacey Simms 4:05 Well, I really appreciate you jumping in because as you know, people have a lot of questions nervous times right now. So the The first thing we need to do is is do some disclaimers, obviously, while Dr. Vanderwel is our pediatric endocrinologist, he is not yours. So please, any comments questions that you may have addressed them to your own physician as well? Nothing I will put words in your mouth here, nothing that Dr. Vanderwel says today should be taken as your own personal medical advice. We're here to get general answers to general questions. And that's really about it. So I'm gonna put you on the spot a little bit, I think. But as you listen and watch at home, just you know, let's use some common sense here. Dr. Mark Vanderwel 4:43 Yes, I'm not speaking for the pediatric endocrinology community in general. I'm speaking for myself and different physicians have different perspectives on how they take care of kids with diabetes. Different physicians will have different perspectives on Covid 19. And what I am saying is my perspective And it will not even apply universally to all of the patients I take care of because we know you are all different. Similarly, I am not a pediatric infectious disease specialist. I'm not I am not an epidemiologist, and I'm not a fortune teller. And I think we're all worried and we do not know what's going to happen in the future. And a lot of what we're talking about is just predictive, then we don't know. Stacey Simms 5:21 All right, so good things to keep in mind. Also, this is first being broadcast live on Facebook. If for some reason as you're watching it, just bonks out or something crazy happens. We're recording the audio, this will be rebroadcast as a podcast, it may be broadcast in video in some other forms. If you have questions or comments. We're using technology called stream yard, and I can see your comments on Facebook, but we're not actually on Facebook. So there's a big delay, most likely, so bear with us. And I do have a lot of questions that I took in advance. So if we don't get to your question today, I promise it may not be with Dr. Vanderwel schedules permitting, but we are going to be addressing Senior questions going forward. And you know, we're just here to see what we can do. So we want to just jump right in. Sure. Let's go. All right. So my first question is really just about what you're hearing these days because I'm talking to you at home, you're not in the office offices is closed, but are you still getting close? Okay, so what are people asking? Dr. Mark Vanderwel 6:16 Yeah, so, you know, I think the the primary things are, will we still have appointments? And the answer is we will eventually have virtual appointments. Although a lot of people will also need to be rescheduled, we don't only take care of kids with diabetes, and there are some conditions that we do need to see face to face. In general though, I think most of our kids with Type One Diabetes will be able to seen by a virtual visit, and we'll talk a little bit about that in just a minute. We do still have nurses answering phone calls in our office, I'm not sure what other offices are doing. So we have nurses answering phone calls. We have a physician that's on call 24 seven for hospital based medicine. And so we will we are creating a schedule. That's why our office is closed. We're working on developing virtual visits. And we've never done this before the platform that atrium uses was originally designed for perhaps five, six pediatricians to use to handle only general pediatric calls. And now this platform is being spread out to be used by pediatric specialists, as well as general pediatricians. And I think more than 100 physicians and, uh, and other providers are going to be on this platform. So we're still learning how to do it. And that's why we canceled appointments for a few weeks, but we will have virtual visits up and running hopefully, by next week, Tuesday, Stacey Simms 7:34 because we're going to be in that soup, right? Yeah. Dr. Mark Vanderwel 7:38 Your name on my schedule when I was telling everyone that exactly. Stacey Simms 7:43 Alright, well, I won't call your office and ask what you're doing with me. I will let them reach out to us. When you're talking about virtual and again, this is kind of specific to your office. I don't even know yet. Do we on the other side have to do anything yet or you'll read? Yeah, we'll watch. No, Dr. Mark Vanderwel 7:58 we we Will for our type one diabetes patients will likely have a medical assistant call you first maybe on the day of the appointment maybe beforehand to review any changes in medications, any new allergies, the types of things they usually ask you while they were checking you back in. And then in preparation for the phone call with a physician, we are going to ask you to gather diabetes data for us whether it's a pump, download a CGM, download a meter download, and that'll be the main thing that we as physicians will review. So we'll tell you more. We'll try to talk through a little bit more about how to do that. Although hopefully you all know how to do that. The physician will also will hopefully again, this is all new. We'll have all that information online. Stacey Simms 8:42 If you're watching, you kind of saw me roll my eyes there. Dr. Vanderwel knows this but it's a little embarrassing to admit, I never upload anything in advance. I tell them please don't be mad at me. I think the only time I ever logged into T Connect is to upgrade the pump. So Dr. Mark Vanderwel 8:57 well you know, I think the thing is, we We'll be able to get that data without, without advanced uploading, I don't want to come that 100%. But I think if your data is there, we should be able to access it. But we're gonna learn that over the next three to five days. Stacey Simms 9:12 That's what we're all be learning it, I am sure. Um, in terms of questions that people have in between these appointments, you know, one that came to mind this morning was, you know, if I, if I need refills, if I'm worried about supplies, are you here? I know most people just call their physician pharmacies are open, but are you hearing anything about issues, shortages, that sort of thing with supplies Dr. Mark Vanderwel 9:35 whatsoever, and I hope we don't, um, you know, Covid 19 is going to affect people in every sector. And I hope we don't get to a stage where there's problems with pharmaceutical production at this point, there is no anticipated problem with production of insulin production of test strips production with any other diabetes related spies. And so No, I do not foresee that as a problem. I know there's the temptation to stockpile And that's one of the things that we've seen in the general public, obviously, with toilet paper, hand sanitizer, etc. And there's that desire Should I stockpile my insulin? Well, we can't commit insurance fraud. And so as physicians, I cannot write a prescription to your pharmacy saying suddenly that a child who used to use 20 units of insulin a day is all of a sudden requiring 200 units of insulin per day, so that your insurance will cover additional insulin, I can't do that. That's illegal. And so we will be honest with the pharmacies. I'm not sure how you can get extra insulin just in case that might be something better to work with your pharmacy in terms of what they will cover or what they will allow your insurance to cover. But I do not foresee a deficiency in any diabetes related supplies. Stacey Simms 10:45 Let's jump in and talk about Covid 19 best that we can. One of the questions that seems to be coming up over and over again is you know, we've all seen in the early days of this at least, the charts that came in from China and Italy saying they're the comorbidities and diabetes Sure, can you do you know what that means? Because one of the questions was, is it all type two is it you know, work? Dr. Mark Vanderwel 11:06 Right so earlier this morning I saw some data recently published in the New England Journal of Medicine related to the children 10 and under. And the only fatality in the Chinese data that was published was a 10 month old, who had had intussusception, which is basically when your intestines telescope on each other. And so the child was already previously ill because of that, and there were no other fatalities in that population under age 10. I do not have the data for other age groups stratified out but that was what I saw on the New England Journal of Medicine earlier today. When the word diabetes is used, obviously, that is a big word and often refers to both type one and type two diabetes. And so as far as I can tell from all the Chinese data, when it says diabetes is referring to the big group of both and everyone's worried at greater risk, because I have type one diabetes, or let's face it type two diabetes? And the answer is, we do not think that people with type one or type two diabetes are at any greater risk of contracting Covid 19 than the general population. So there's no increased risk of picking up this virus as far as we know. Now data changes every day. That's the caveat here. We are still learning but at this point, there's no reason to think that people with diabetes type one or two are more likely to get Covid 19. Just like any virus, whether it's the flu, whether it's the cold, being sick, when you have diabetes makes taking care of diabetes more difficult, and we see that frequently during flu season, that when people are feeling sick, and they may not be eating or drinking quite as well, they have the predisposition to go into diabetic ketoacidosis. And so my answer to how do people with type one diabetes are people who have children who have type one diabetes, better take care of their children, either if They have been exposed to the virus or if they are already showing symptoms of a viral infection. And the answer is us you're sick. And by Sick Day protocol, I mean check for ketones. Even if your child's blood sugar is 124, you can still get ketones if they are not eating or drinking very well. So remember, ketones are what happened, or what happens when your muscles become desperate for energy. And usually with people with diabetes that happens when you don't have enough insulin in your system to help your body take the sugar out of the bloodstream and get it into the muscle cell to be used for energy. But sometimes ketones can happen if you're just not eating or drinking very well. And so ketones can happen even with a blood sugar 124 if your child has been sick, or if she is vomiting or if he is not eating very well because he feels sick. ketones also can be happening more often in the presence of fever. So although as far as we know right now, nausea and vomiting are not necessarily symptoms of Covid 19 like they are the flu. For example, fever is When you develop fever, that can also cause greater metabolic need, your muscles become more desperate for energy that can lead to the production of ketones and cause an increased risk of diabetic ketoacidosis. So my summary is related to kovat, 19 and diabetes, your child is not at greater risk, their immune system should still work just fine to fight off the virus However, they are at greater risk for developing diabetic ketoacidosis in the context of a viral illness. Stacey Simms 14:29 A couple of follow up questions on that with keep checking for ketones. Do you recommend a keto blood meter? Are you comfortable with sticks and easily? Dr. Mark Vanderwel 14:40 Yeah, I mean, most people check urine for ketones a blood ketone meter can give you more up to date information, for example, that tells you what's in your blood sugar level. That's what's in your blood right now. Whereas your urine is often saying, well, we made this urine an hour ago and it's been sitting in the bladder for an hour so it's not as up to date as before. glucometer as a blood ketone meter is, but still I think you can get the information you need from, from urine, ketosis, I don't feel you have to rush out and get a blood ketone checker just because of our current situation. I mean, Stacey Simms 15:13 I'll be honest with you, and I don't know if this is true confessions time, we've never we've never purchased a blood ketones. This was the time I thought maybe, you know, the back of my head was like, should I get on Amazon? And then I got on Amazon, and there were so many and I thought, oh my god, I'm gonna buy a terrible one. So, um, stick with what we know maybe for me? Dr. Mark Vanderwel 15:31 Yeah, I mean, there are many other things to worry about. And if you felt comfortable checking your child's urine for ketones, there's no need to suddenly change to use a blood glucose blood ketone meter. Stacey Simms 15:42 Well, he's 15. So maybe, Dr. Mark Vanderwel 15:43 Stacey Simms 15:46 I'm sorry, this if you're just joining us, we did have a bunch of disclaimers that this is not medical advice you should be taking personally, but this is my son's pediatric endocrinologist. So I might sneak in some personal questions. We'll see. But the follow up question. fever. And then I'm going to ask you that question about repro fantasy. Before I even get to that one, do you recommend? I've heard that sometimes it's better to let the fever go, you know, not to 104 but to 101, things like that. Dr. Mark Vanderwel 16:17 That is a great question Stacy and I am no longer a general I should say this. I am board certified in general pediatrics, but I have not practiced general pediatrics for 15 years. However, that all being said, fevers makes you uncomfortable. When your temperature is high, you don't feel good, but many people are excessively afraid of fever as something that can hurt you, either in the short term or the long term and in general fever just makes you uncomfortable. So when we're sick, and we have a fever, we often for other illnesses have taken an antibiotic whether it's acetaminophen, whether it's ibuprofen, and what some, some French suggested Scientists have suggested is that ibuprofen and other anti inflammatories may blunt your immune response as of right now that information what's the exact word I had it pulled up is still up for debate. It is not necessarily something that is. That is a stocking answer that we say you must not use ibuprofen in the case of a fever related to Covid 19 unproven was the word I was looking for unproven so let's let's get the elephant out of the bag. What is killing people with Covid 19 is not fever. What is killing people with Covid 19 is respiratory distress is the inability to get breath in and children with diabetes are at no greater risk for developing that than children who don't have...
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"Just Don't Do Nothing" - Diabetes Dad Tom Karlya
03/18/2020
"Just Don't Do Nothing" - Diabetes Dad Tom Karlya
This week, the perspective of a diabetes dad. Tom Karlya has become much more than that since his daughter was diagnosed in 1992 and one of his sons in 2009, with many efforts extending through all parts of the diabetes community. But he says it all comes back to family. We’ll talk to Tom about his story, his efforts with the Diabetes Research Institute – the DRI – his acting career – and much more. Tom is a tireless advocate and if you’ve never heard him speak, we promise you’ll be inspired. In Tell Me Something Good – college sports, school scholarships and a young JDRF advocate answers Stacey's questions. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is diabetes connections with Stacey Simms. Stacey Simms 0:26 This week, the perspective of a diabetes dad Tom Karlya has become much more than that since his daughter was diagnosed in 1992. And one of his sons in 2009. With his efforts extending through the community, but he says it all comes back to family. Tom Karlya 0:45 Communication is the most important thing. And for the for dads to realize, to look for places where you can pick up the ball and run with it, where you can be part of your child's life. Don't let your wife do it. Make yourself part The solution Stacey Simms 1:01 will talk to Tom about his story, his work with the Diabetes Research Institute, his acting career, and much more. Tom is a tireless advocate and if you've never heard him speak, I promise you'll be inspired in Tell me something good college sports school scholarships, and a young JDRF advocate answers my questions. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. I am your host, Stacey Simms. We aim to educate and inspire by sharing stories of connection when it comes to type one diabetes. My son was diagnosed just before he turned to 13 years ago. And I know there's an awful lot of stress in all our lives right now. This is a difficult time to say the very least. I'm not going to fill you up with a whole bunch of cliches here, but I do hope That as you're listening, you do know that even if it's online, the diabetes community is there for you. We're here to help. We're here to share stories. Hopefully your local community is banding together. I'll talk about that a little bit later on in the show. But this week's show is not going to be about COVID 19. It is going to be about some inspiration. You know, with everything that's going on, I thought it would be really nice to have something like this. Tom Karlya and I actually spoke a while ago. And while I was listening back to this interview, like I do all the interviews, it struck me that it sounds a bit like a keynote speech that you would hear at a JDRF summit or another diabetes gathering like friends for life, because all of those conferences have been canceled. I really thought maybe this would make you feel like you're hearing a speaker at a summit. Right? So let's listen to it. Maybe in that vein, and if you're bummed out like I am that those conferences have been canceled. I mean, let's face it, they are for education. They're for learning. They're for resources, but they're also just to get together and see friends, right? You know, maybe this podcast or the Facebook group can be some support for you a place to hang out. So you can always email me Stacey at diabetes, connections calm, or jump into the Facebook group, which is diabetes connections with the group. I know that diabetes makes us tougher to begin with, right? This is such a great community. And we do know how to help each other out because we do it all the time. Right? I think we're seeing some neighbors come together in the greater community, at least if where I lived, you know, do you need this? And can I go to the grocery store? People with diabetes, have been doing that for a long time. So let's just not stop doing it. Now. As you'll hear Tom say, as he has said for many years, you just don't do nothing. You can do a little something and really help. And we'll hear from Tom in just a moment. But first diabetes Connections is brought to buy One Drop. And you know, I spoke to the people at One Drop and I was really impressed about how much they get done. Diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need get 24 seven coaching support in your app and unlimited supplies delivered, no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to diabetes, connections comm and click on the One Drop logo. My guest this week was brought into the diabetes community back in 1992. When his then two year old daughter Kaitlyn was diagnosed one of his other children he has two other sons would be diagnosed 17 years later, but Tom Karlya jumped Writing to see where he and his family could help taking part in early JDRF campaigns, the Diabetes Research Institute and children with diabetes. I think Tom vo would tell you the best thing about him right now is that he's going to be a grandfather. The news came after we had spoken for this interview already, but his daughter Kaitlin, and her husband Andre, are expecting later this summer. And yeah, that's the Kaitlyn diagnosed as a baby herself basically back in 1992. Here's my talk with diabetes dad, Tom, Carl. Yeah, Tom, thanks so much for joining me. I cannot believe that I'm just now finally talking to you for the podcast. I appreciate it. I know how busy your schedule is. Tom Karlya 5:42 Wow. They Thank you, to you. I mean, it's it's you know, I guess they say when people are busy, they're busy. And those are the type of people we like to hang out with. So I know how busy you've been, how busy I've been, and now the twain has met. So that's terrific. Stacey Simms 5:55 So much to talk about here and I want to talk about your you know, your experience. ances over these many years, but let's start by, you know, your work with the Diabetes Research Institute foundation. Do you mind telling us, you know, for people who may not be familiar, what is that? Tom Karlya 6:13 The Diabetes Research Institute in the foundation is is has support for the Institute. It is all the money that the foundation raises goes to the Diabetes Research Institute, which is an 87,000 square foot building that sits on the campus of the University of Miami about 35 years or so ago, when the Diabetes Research Institute foundation first began by a group of parents like many of the diabetes organizations that are out there, somebody there had a connection to the building and construction trade union. And that gentleman said, Why don't we try to raise more money for you. And during June on Father's Day weekend, they created debt, dollars against diabetes and they stood on street corners around the country with buckets and they collected change from anybody at the stop. The lights, etc, etc, etc. And they continue to do that. So they had enough money, and they raised like $14 million. And they took and they built the Diabetes Research Institute, which when it came time when the building was done, the foundation said, Let us name the building after you and all the terrific people of the building trades unions, and they sit down and they say, let's just put a plaque on the wall that said this building built by the hands and hearts of Americans construction unions, and that plaque is still there. It represents a beacon of hope nobody expected it to become the research center that so many organizations, the wonderful organizations out there, the JDRF the ADA is the National Institutes of Health. They fund us We are the scientists doing the work at that center, Stacey Simms 7:52 and d-ri to be clear if people are not familiar. The work that Dr. II does is cure, cure focus research. Right, Tom Karlya 8:00 secure focused all the stages of research, basic preclinical and clinical happen within one building. A lot of time in academia, you come up with a finding, then you have to go someplace else to find somebody to collaborate with, we go from one floor to the other floor to the other floor. And our saying is, if we can't move it up, we move it out. Because funds are so limited, we have to make sure that we stay focused on that supply, sustainability insight, which is the three main pillars that we look for, to cure this disease once and for all. And there's also a d-ri Federation, we share all of our information, we hold on to none of it, and we have federations around the world for that matter that we share information with because in Italy and in China, they can do the research a lot cheaper than we can do here. So a lot of times we'll test things out there, then bring it here and follow through the steps of the FDA that are set, etc. to try to get it from the bench to the bedside. Stacey Simms 9:00 It's so interesting when you kind of dial down and look at how these things work. And I know that as some people are listening, they may be thinking, well, if it's so cure focused, and it's been around that it's funded, you know, how can we don't have more progress? How can we don't have a cure? Unknown Speaker 9:14 I hate to put it in such simple terms. But Unknown Speaker 9:16 can you talk a little bit about some of the progress that has been made? Tom Karlya 9:21 Yeah, that's, you know, I said this before, that's your mouth to God's ears. That's been our hope since the beginning. And it is such a complex disease, and all the wonderful organizations out there as well as the research centers out there. This is just not an easy disease to figure out. I mean, years and years ago, when we first it would there was nobody funding research years ago for type one diabetes, and then to go out there and say, well, we're going to try to cure it. Well, as we went along, and as many other organizations that have, in their wonderful ways have funded our work and work around the world for that matter, have found out just how calm Flex this disease is years and years ago, we were actually told we were one of the first centers. And actually Dr. Kamila, recording our scientific director. He invented the machinery with a board member, Ramon Poe, who donated all of this time, they created the machinery to separate the islet cells from the pancreas when they get donated, and we give that to anybody around the world just to help them try to move it forward. But nobody knew that taking islet cells. So this is interesting, because I've been at this for 26 some odd years since my daughter was diagnosed at age two. And there was a time when people thought you will not be able to take islet cells, insulin producing islet cells and down years later became trying to re engineer stem cells and things to create insulin. There was no proof out there, that you could take islet cells and put them in another body and they would work well. They Did and I have and what's happened since that time is that as we move science forward, you know, I think we should do everything we can to try to figure out how do we make islet cells produce insulin in another person's body without being attacked? And why so many of these are immunosuppression drugs. You know, when we first started, people would say, Oh, yeah, but there are immunosuppression drugs. What people need to understand is that when it came time for the scientific studies, the quality of life of people who entered these research projects, they became patients for the clinical trials, they had no quality of life, because they could not feel going hypoglycemic. They could not feel their blood sugar going low. They couldn't drive, they couldn't hold jobs. They be talking to people they just kill over. So for a lot of these people, this first islet cell transplant became lifesavers because their quality of life was just not existed. something interesting happened when we did that. And around the world, this was done to a lot of different centers and not just at the d-ri, but we were at the forefront of it. And the interesting thing about it, even patients that went back on insulin, for the most part, not in every case, but in the majority of the cases, probably even excess of 80%. But that's just my layman's guess. They're hypoglycemic reactions went away. Even if the islet cell transplant did work, and they had to go back on insulin again, they did not suffer from the hypoglycemic episodes that they had. It has always been this great moving science forward. But the truth of the matter is, is that we will continue to work and I and I was active, I was doing other things when Caitlyn was first diagnosed. And for those who don't know the story, I was an actor for years. I was in a show in New York for for 1314 years talk about that. And we'll get to that and I've done a lot of great things, but I was on my way to a matinee performance when my beeper went off you tell people about beepers like What's that? And it just was said 911. And I went over to the phone, I can tell you right where it was, I remember to this day, I went to hold off of the of the bridge and the Lancey street in New York City. I went to a phone booth, for those who don't remember phone booths or things that had a phone in it. Right. So I called home and my wife said, Tom, I have to rush Caitlyn to the hospital. They think it's type one diabetes, and she had been sick and she had the flu. And, you know, again, it was everybody thought it was something else. And when I got to the hospital, which took me two hours, that was a whole episode in itself. I saw I looked down the hallway and I remember my wife Jill had Kaitlin's jacket was hanging from her hands. And we just looked at each other and I went in and Kaitlin had all these wires and everything attached to her. And I pushed the hair out of her face and I said, Hi honey, and she said Daddy, and she looked at everything she was attached to and she looked me square in the eye and She said, and it stuck with me. I remember it every day when I start my day. That was a promise I gave my daughter. And I became, you know, whatever. I became an advocate and constantly working at it. And then I got really, really angry because I thought my reward was 2009, my 13 year old son was also diagnosed. So I was pretty angry. And that was also four days after my dad died. So when someone tells me they had a flat tire at a supermarket that week suck, they said, Oh, no, no, I can beat that. Well, so an X and here we are, you just Stacey Simms 14:35 have your two year old daughter looked you in the eye and say daddy fix to something that there is no fix. I don't want to make you relive that moment. But when your son was diagnosed, and that was Rob is diagnosed 17 years later, the change in the diagnosis. I know it's not a fix. There's no fix yet, but what was your perspective at that time because the diagnosis had to be different and the care had to be different. Right back to Tom answering that question in just a moment. But first diabetes Connections is brought to you by Real Good Foods and there is something new from Real Good Foods. They have ice cream. Oh my gosh, real good ice cream. My whole family tried it. We have our favorites. I'll share a little bit more specifically down the road. But oh my gosh, the vanilla is delicious. That's the first one we tried right because you can't hide anything with just a vanilla. So we went right to that. I mean they have other great flavors. They have mint chocolate chip, they have chocolate, they have peanut butter chocolate chip, and we started with the vanilla and it was really good. It tastes like real ice cream because that is what it is. You can find out more at the website and preorder. It's available in select stores. As always, there's the store locator on their website, find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now, back to Tom Carl. Yeah. And he is answering my question about how different it was when his son was diagnosed with Type 117 years after his daughter. Tom Karlya 16:13 Wow, you're absolutely right. And again, the tools, I always use that phrase, the tools that our diabetes toolbox for our kids has become so amazed, we used to have to wait 90 seconds. After we put Kaitlyn at that time, we couldn't even do our fingers. We had to do her toes. So we get a blood drop on a glucometer. And then we would wait 90 seconds. See if I could help everybody understand one main point that get diagnosed today than when not only 2009. But 1992 when Kaitlin was diagnosed, that the tools we have now are so far advanced. We always say when we try to get our children to live normal lives, you literally can live as close to a normal life as you can accept and there's a huge death there is your child. Type One Diabetes. But for those who have it understand what I mean that with the technology we now have, there was no, Caitlyn was the second child on Long Island to go on an insulin pump. Wow, could you imagine people don't realize that these things were the size of backpacks when they started these. I mean, it's not, you know, like an astronauts backpack, they were huge, but they got smaller, they got better, they got quicker. And that's why research to me, that's why I will never give up hope. Somebody looked at somebody checking their blood sugar, and they said, We can do better with that. And we have, and it's the same thing with research as long as there's a research center. And for me, this is just and everybody else can find their own place where to give their time and energy, but the Diabetes Research Institute, the fact that they are focused now that's a very interesting greement to have with academia, that we are focused on curing type one diabetes, and when we do that many of the patients type two patients for an insulin We'll probably benefit from that as well. But our focus is to cure this disease. As long as there's a place like the d-ri that focused on curing this disease, then I will never give up hope. Stacey Simms 18:11 My question on that you said something very interesting. You said it's a very interesting agreement to make with academia. Do you get pushback from people who want to do research, but it's not cure focused, Tom Karlya 18:22 we get not pushback, but we get increased from any university has the right to do and the University of Miami and we have to be honest, as you know, it's such a wide range University. It's got so many different aspects to it. But when they come to us and they say, look, can we look at looking into the type two type of research? Well, we tell them to go to another part of the campus and look for it. And they do. There are places probably on us campus that will focus on...
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Coronavirus & Type 1 Diabetes - Update
03/12/2020
Coronavirus & Type 1 Diabetes - Update
A brief update on COVID-19 and type 1 diabetes recorded March 11, 2020. Stacey talks to Dr. Satish Garg, an endocrinologist at the Barbara Davis Center for Diabetes. Dr. Garg talks about what we know right now, what he's telling patients and advice for anyone with T1D. Find out more about Coronavirus: ----- ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! 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 Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom Announcer 0:20 this is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 Welcome back to another episode of the podcast really glad to have you along. And once again, we are doing a short episode on Coronavirus and type one diabetes. I'm your host Stacey Simms. And you know after we put out an episode at the end of February about this, I heard from a lot of people who asked me to keep updates coming. Now as I have said before podcasting isn't really the best medium for breaking news. You can listen to this episode immediately as it comes out. You could be listening to it weeks or months years down the line. But I do think we can use the podcast here to get some good information out. So in the limited way that we can, that's what I'm trying to do. This episode is going to be on the shorter side, maybe 15 minutes of the interview with an endocrinologist just sort of talking about where we are right now and answering some specific questions from listeners. We will have a regular Diabetes Connections, interview and show next week. I'm going to come back after the interview and I'll talk a little bit more about the show going forward. I am recording this on March 11. The same day the interview with Dr. Satish Garg was recorded, obviously, the information may change. That's why I'm telling you the date. Please make sure you check the links in the show notes. They are on the episode homepage, or in the show notes. If you're listening on an app. It's kind of hard to find sometimes, but most podcast apps will have a place that says details or more information and that Where I'm putting the updated links, the ones that will automatically update when it comes to the coronavirus. And one more thing, you're going to hear Dr. Garg mentioned people with type one diabetes as having compromised immune systems. I did press him on this off the air and he says he uses that term to talk about people who have an autoimmune disorder like Type One Diabetes because he says, once you have one autoimmune disease, you're likely to get more like celiac disease or Addison's disease or other auto immune issues. He said, and you will hear him say this, it does not mean that people with type one diabetes are more likely to get sick from viruses like the flu, or COVID 19. With all due respect, I think it was a confusing way to talk about autoimmune conditions. And if you've listened to the show, a compromised immune system is not how anybody has talked about it before. So I did think that was worth pointing out to you. All right here is my interview. It is with Dr. Satish Garg of the Barbara Davis Center for Diabetes. Dr. Garg, thank you so much for spending some time with me. I know you're not only seeing patients but you're trying to reassure patients that I'm sure are calling in about the situation right now. how busy is your office at the moment? Are you fielding a lot of worried calls? Dr. Satish Garg 3:24 Very many. I mean, my staff is swamped and getting calls and wanting us to write letters because they have Type One Diabetes should they go to work? And not only me and my emails are also we have nine different providers on the adult side here at the Barbara Davis center for diabetes and so many educators and all of them are swamped with these emails and text messages they're getting from patients. Stacey Simms 3:52 So what are you telling patients who are asking if they should go into work? Dr. Satish Garg 3:56 We primarily tell them to go on to these websites. JDRF has created a nice website giving guidelines for people with type one diabetes and also tell them to go on our website we posted some through University of Colorado and to coronavirus.gov and that is to the CDC. And if they have some degree of comorbidities, for example, if they are older, older than, you know, 60 or 65, and they have heart disease, hypertension, obviously they have diabetes, they may want to avoid places where there are larger crowds, or they may want to avoid unnecessarily getting in contact with somebody, for example, going for rallies and things like that people need to avoid so general precautions nothing specific to people with type one diabetes, except if they have comorbidities. We do recommend people to get the flu shot but they are specifically not at high risk of getting Any of these infections if their glucose control is good. But their immune system is compromised, because they have autoimmunity, it does get confusing. So the bottom line is that people have tried to maintain their glucose control as best they can to avoid hyperglycemia and avoid wide glucose excursions. And those are the general precautions. And of course, if their glucose control is not good, then they might be more prone to get bacterial infections and other infections, but their immune system is not normal, quote, unquote, on a healthy individual like you and I, who don't have type one diabetes, our immune system is different than the ones with Type One Diabetes. So it makes sense. Stacey Simms 5:45 Yes, absolutely. I totally understand where you're coming from with that. But bottom line, good glucose control, you are not more likely to get COVID 19 if you have type one diabetes. You said right before we started taping that you had just seen an 84 year old patient with type one, what's your advice for that person? Dr. Satish Garg 6:05 So we have more than about 400 patients who are older than 60-65 who have type majority of them have type one diabetes and some have type two, but they are requiring insulin therapy. Anybody who is in that age group, I always advise them especially many of them have comorbidities hypertension, hypercholesterolemia, heart disease. So those individuals I tell them specifically avoid, I'm not asking them to quarantine. Of course, if they have dry cough, and they start running fever, they should self quarantine, do advise them not to travel because right now, we don't know how the aircraft and what have you are being cleaned. Avoid large crowds. So just the general precautions that CDC advises that's what we are recommending to go People go they are definitely at high risk, one because of the age, second type one diabetes. And third, they have majority of them have some degree of comorbidities. Stacey Simms 7:11 You know, one of the questions that we see a lot is, how can I prepare to be self quarantined? You know, a person with diabetes or household that has a person with type one diabetes in it. What are you recommending people keep on hand for two weeks, 30 days? Dr. Satish Garg 7:28 Well, I think there might have been an overreaction to that people are slightly overreacting. Oh my God, we might suddenly be locked down, like Italy's logged on, like part of China was locked down. I hope that doesn't happen. So people are going on ordering insulin, masks and what have you. We don't anticipate that for example, in the state of Colorado, we only had about 15 to 20 cases now having a tip that they haven't tested a whole lot once you get a lot of people tested that One will really know the hard numbers right now, unfortunately, we do not have the hard numbers to how many people have been really affected by this disease. But we just give general advice to these individual. Stacey Simms 8:15 You mentioned people trying to stock up on insulin. You know, one of the problems is a lot of insurance companies will not pay for that much, right, people are trying to get the prescriptions renewed. Are you running into that same thing, Dr. Satish Garg 8:26 most of our patients would have about three months of supply, and if some of the insurance companies won't give them luckily for us at the Barbara Davis center, we have so many samples, we just give them one or two extra pens or vials so that they don't have to worry about it. Again, I'm hoping that this won't be a major event. Let's hope as the temperature turns around, that this virus will be just like what was Spanish Flu back in 1918. That will go through the cycle, but we don't know that a lot of people most of us Do not know the exact cause of this particular virus. Stacey Simms 9:03 I will defer to you as the medical professional, but you're hoping it's like the Spanish Flu of 1918? That killed an awful lot of people. Dr. Satish Garg 9:11 Well, but the Times have changed. You're right, that killed millions of people. No, we're not seeing anywhere close to that. Because what healthcare was 1918 100 years later is night and day. For example, back 40 years ago, I used to tell all my type ones, you're not going to live beyond 35 to 40 years of age. Today, I tell all of them, you're going to reach 80-90 years of age, I'm not aiming at 100. But you're going to reach nearly full potential of your life expectancy. So times have changed healthcare quality and what is available had changed night and day. So I think it'll be unfair to say that we're going to see those sort of mortality rates, but we saw back in 1918 because of the health care standards that are changed dramatically. Stacey Simms 10:01 Um, you know, another listener of mine, I'm reading you some questions that I took from my listeners. And one of them had asked that there are some studies that people with type one have worse outcomes after major events like heart attacks, because of the autoimmune issues that people with type one already have. So she's concerned about that with Corona virus. Is there any indication? I know it's still early that one of the reasons that it kills people is because it does affect the immune system. Dr. Satish Garg 10:32 So here's the problem, Stacy with that we do not have data to say that affect anything right now we have so few deaths in the US or even worldwide, and leave alone people with type one diabetes now convert to the best of my knowledge. None of the patients with type one diabetes has died. But again, that may be what I know of the numbers. Again, we do not have any for example here, the Barbara Davis center. We don't have any patient with the corona virus, and they have a significant number just like any other clinic of comorbidities. But we don't have any such problem right now. We are telling people in general to avoid travel for example, please don't be on a cruise ship that is a living source of petri dish that you're going to be definitely there is even 1% chance that you can avoid that you should avoid going on a cruise ship. Now, regarding other travel, the University of Colorado has already banned all our personal and domestic and international travel. So some common sense is to be taken into con in the sense if you really don't have to travel anywhere. avoid that. That this thing's bad. Through, hopefully just like a flu virus, and over time, it will all go away, we'll hopefully find a vaccine. And this will be a thing of the past. But right now, there is too much unknown, especially in patients with type one diabetes. Stacey Simms 12:14 All right, so I have a question for you from Julia, one of my listeners who is actually a flight attendant, so she says, I have no one to ask this question. I don't know if you'll be able to answer it, but we'll give it a try. She says I fly internationally to London. I do everything I should to avoid getting it but I have accepted is likely I will get COVID 19. When this happens, and I'm told to self quarantine, unless it's very life threatening. She says, What should she do for herself in a mild case scenario? So here's the question a person with type one who does get this and is not having a life threatening incident of it. What should they do? Dr. Satish Garg 12:54 I would do self quarantine. Make sure you have enough insulin, fluids and whatever else necessities of day to day life you need. Yeah, they should be no different course to the best of our knowledge. Again, as you asked me earlier, the effect on diabetes, But again, we have no data that anybody with type one diabetes who is well controlled, behave any differently than the ones who don't have type one diabetes. So, General precautions, you got mild cough, small fever, self quarantine, and you should do fine, just like you would do it for a regular flu Stacey Simms 13:33 and your regular sick day plan that everybody should have their endocrinologist in ketones, that sort of thing. Dr. Satish Garg 13:39 Yeah. Great. Stacey Simms 13:40 You know, we've said well controlled several times, and I know every one is different. And I almost hate to ask this question, having a child with type one for 13 years. So I think I know the answer, but I'll ask it anyway. When you mean well controlled, is there a number again, knowing that everybody's different? Is it an A one C of 7.5? Is it a Is it an in range? The time in range number, you know, when do we start worrying about well controlled type one diabetes, we know an A1C of 14 isn't going to cut it. Dr. Satish Garg 14:08 So there are many ways here, as you rightly said, for example, somebody at the age of 70 or 80, I probably don't want their A1Cs to be in the 7s, because they have lived their life. They don't have any significant comorbidities. Why don't you just take it easy and avoid the risk of hyperglycemia. Someday in the teenagers 30s and 40s, you probably want to me one sees around seven, with a time in range of 65 to 70%. That's our goal. 70% of our patients use some sort of a continuous glucose monitor, which is what we recommend and that is true for everybody who is at risk of getting Corona virus. That is one advice I would definitely give them that they should go on a continuous glucose monitor if they don't have one just because when you're sick, your blood sugars are To be higher that you need to be rather than having to finger prick every five minutes. Why don't you have a continuous glucose monitor, preferably a Dexcom g six because that is far more accurate as compared to the average Libra, which is cheaper. However most insurance companies pay and thus you can continuously be monitored and adjust your insulin dose accordingly. Rather than having to prick yourself 10 times a day. That's the only advice I would make change, especially to the flight attendant. Also, if she's not using a CGM, I would strongly recommend that to use as one. Stacey Simms 15:36 It's interesting when you mentioned cost. I did get a question and I know it varies state to state. I know you're a doctor, not an insurance expert. But do you know when a governor declares a state of emergency, you know, in North Carolina, our governor has recently done that it is mostly about federal funding. It's not about emergencies in the street. I think most people recognize that by now. Is there any leeway for people To get extra supplies to be able to pay for things at the pharmacy, like a Dexcom? Dr. Satish Garg 16:09 Yeah. I mean, I wish I had an answer for that. The only thing I would say is, if that scenario happens, I'm sure we can get a special prior authorization. This is a scenario that nobody has seen or confronted with. So we don't know answers to many of the questions you're asking. However, if one is facing that situation, we could definitely look into it and get a prior authorization for that individual. Stacey Simms 16:36 Has there been any information coming out of you know, China or Italy or elsewhere, where they've been dealing with this for longer about people with diabetes and about how it reacts with COVID 19. I know when we say diabetes, that they lump everybody in there as one part to separate it, but have you been able to parse anything Dr. Satish Garg 16:55 and that's what I was going to tell you next one in China. According to To quote unquote, what they say, Type One Diabetes is rare. I don't know to what extent is that rare, they just don't have the information on that attack. Secondly, they lump all diabetes, type one, type two, type two, who has a lot more comorbidity is a very different ballgame falls into those individuals who are more vulnerable and who are elderly. So I don't think those criteria may fit. So we don't have any data to that effect, specifically, type one diabetes. Stacey Simms 17:30 What are you all doing in your office? As you said, You're seeing patients, you're they're talking to me today? What are you doing to stay safe? Dr. Satish Garg 17:38 Just the general precautions, asked my staff to make sure they clean all the clinic rooms, we have like 44 exam rooms, clean all the exam rooms, surfaces and whatnot. And again, we've been lucky. None of our patients have yet been at least reported to have any of these coronavirus to so far be unlucky but who knows when you Going to be confronted, I'm sure you must have heard there was a meeting in Boston, where there were 200 biotech people, and I believe 17 or 20 of them have come down with the corona virus. So that is obviously put issue, whether we should have these large gatherings at all. And I would just lastly say to all patients with type one diabetes, just take care of your diabetes, the usual way, it's not a bad idea to have some extra supplies in case like what they have done in New Rochelle in New York area where they're calling it containment, basically, allowing less movement in the community. So it's not a bad idea, do a few extra days worth of the supplies but take care of your diabetes, the usual way as best as possible. I strongly recommend using a continuous glucose monitor does if you were to be infected, you have continuous access to the data. just you glucose management much better. But otherwise there is lack of data in specifically to type one diabetes and there is no different we will behave just like as a non diabetic individual. Stacey Simms 19:13 Well, thank you so much for spending some time with me. I appreciate it very much. And we'll check back. If any of the information changes or frankly, we get more of it. Right. We'll get it out there. But thank you so much. Unknown Speaker 19:29 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 19:34 As Dr. Garg mentioned, there is a lot that we as recording on March 11 still do not know especially any kind of breakout information when it comes to type one diabetes. So keep in mind as of right now, when you're hearing people talk about diabetes, they're lumping everybody with every type of diabetes together. You will find more information in the episode homepage including The links that Dr. Guard mentioned at the very beginning of that interview. Alright, so here's the situation on the show going forward. And you know, this may just be for this next week, I have no idea. Like I just said, there's a lot of uncertainty here. But I am not going to make the show all about COVID 19. At least not right now. In the Facebook group at Diabetes Connections, the group, I took a poll, and...
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Lilly Diabetes Device Update: Connected With Dexcom & More
03/10/2020
Lilly Diabetes Device Update: Connected With Dexcom & More
Lilly Diabetes announced they were getting into the pump and pen business almost two years ago. How’s it going? We get an update from Marie Schiller, Vice President of Product Development for Connected Care and Insulins at Eli Lilly – Connected Care is what they’re calling this platform of pumps and pens – now to be integrated with Dexcom. We’ll also have a bit of an update on some other pump companies’ plans for the near future.. bolus from your phone?! In TMSG a big fish, a hula hoop winner and a chance meeting over a foot? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is diabetes connections with Stacey Simms. Stacey Simms 0:27 This week, Eli Lilly announced they were getting into the pump and pen business almost two years ago. How's it going? We get an update. And of course I asked about price and access. Marie Schiller 0:38 Look, we're not here for the sake of having this innovation sit on a shelf somewhere, not why I'm here. It's not why others are here. And so it is really important for us to be laser focused on how people act. So Stacey Simms 0:53 that's Marie Schiller, Vice President of Product Development for connected care and insulins at Lilly We'll also have a bit of an update on some other pump companies plans for the near future. Well, let's sing from your phone in Tell me something good a big fish, a hula hoop winner, and a chance meeting over a foot. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am your host Stacey Simms, so glad to have you along for another week. As always, we aim to educate and inspire by sharing stories of connection. My son was diagnosed 13 years ago with Type One Diabetes. My husband lives with type two. I do not have diabetes, but I have a background in broadcasting. And that's how you get the podcast. I'm excited to catch up with Lilly. I know a lot of people don't want to hear anything from them until they address the price of insulin. And I do understand that I want to be sensitive to that. And I definitely asked Marie all about that. Even though she has nothing to do with the price of insulin but she doesn't work at Lilly and this system. I can't be really separated from that, let's be honest. But I also think I have a responsibility to share what's going on in terms of diabetes technology, and Lilly plans to be a big player in this space. So that's what the interview is all about. We'll be talking about their system. We'll be talking about their partnership with Dexcom and other things as they move forward. Before we get to that, I want to thank Kerri Sparling and the folks at children with diabetes. We replayed the interview that Kerri did with me this was on their YouTube channel and then last week in the kind of the mini episode although it wasn't really a mini we replayed the audio from that interview. It's always a little weird for me to be on the other side of the microphone, but it's always a lot of fun to I bring it up not to hammer on the interview again, if you wanted to see it or listen, you know, you know where to find it and I will link it up in this episode. But because they are doing a contest. The contest is open until March 20. And to enter you do have to email them so I will link that As well, it's over on the children with diabetes a website. But all of these links will be in the episode homepage. They're giving away a paperback of the world's worst diabetes mom and the audio version. So I'd love for you to go and enter and find out more on their websites. Speaking of the book, I am having such a blast on the book tour that I'm doing this year. You know, we'll see how it goes. Obviously there are some health scares out there right now. And I'm not sure that all the events are going to stay as scheduled for right now. They're all on the books that's on the website as well. And if you're interested in the world's worst diabetes mom, that's an easy place to find out more but I have to share with you that I got a great note from a woman in Australia who listens to the show and you know, has read my book she bought it you can get it on Amazon really in so many countries now print on demand is absolutely amazing. And she got it in Australia and she reached out to me because her local group wants to do a bulk order. So we are doing that. And if you have a situation like that where you would like a little large number of books for your group. please reach out to me directly. You don't have to just buy it on Amazon for the full retail price. I am happy to work with you. My publisher has given me some ways to do this. That really makes sense. It's an amazing thing to think about people all over the world reading the world's worst diabetes mom. It didn't say America's worst diabetes mom. So I guess I have to stand by that now. All right. We will have the interview with Marie Shiller from Lilly coming up in just a moment. But first let me tell you about Real Good Foods Diabetes Connections is brought to you by them. Have you tried their cauliflower crust Margarita pizza. They have a full size and a personal size as well. So yummy. It is low carb high protein real simple ingredients. And you know you gotta be careful because some cauliflower crust pizzas are made with corn starch. You know rice flowers, processed grains. And if you're looking for something that is 100% grain free and gluten free, this is what you're looking for. I love how Real Good Foods keeps creating Eating new products, they keep coming out with new yummy foods for us. It's the kind of thing where you as soon as you don't feel like cooking, sometimes you want the convenience. And when you go for convenience, you really don't want to sacrifice nutrition, right? I mean, you don't want to just pull out some junk food. I love Real Good Foods, it tastes terrific. And the people behind them are solid. They get involved in our community. They listen to what we have to say. It's really nice, find out more, go to diabetes, connections comm and click on the Real Good Foods logo. My guest this week is Marie Schiller Vice President of Product Development for connected care and insolence at Lilly. Two years ago, I was part of a group of writers and reporters from the diabetes community invited to Cambridge, Massachusetts, to take a look at Lilly's entrance into the pump and pen market to give feedback on those plans and to hear from their partners. We did an episode back then and I'll link up what I and others wrote at the time. No pictures still of what they show. Very briefly that day, they showed us kind of the prototype, but it is a tiny pump. It's kind of like a fat little disc. It's much smaller than an omni pod pod. It's maybe about the size of the tee sport that tandem is coming out with. I'm actually going to talk more about that after this interview a pump update from tandem some news from Omni pod. We'll get to that after this interview, but I'll put up some photos of the T sport, but this is thinner than that the Lilly pump is just a small thin disc. It is tubed. So the idea is that you can stick it to your body or use longer tubing and put it in your pocket. We do talk about that. It'll fit in the palm of your hand very easily. Of course we do talk about the price of insulin, and what that means for access of anything coming from Philly. So here's my interview with Marie Schiller. Marie thanks for talking to me. I'm excited to catch up. It's been about almost two years since we've MIT in Cambridge, thanks for coming on the show. Marie Schiller 7:02 Thanks for having me. I'm excited to be back. Stacey Simms 7:05 All right, so give us the update. I know we're going to talk about the partnership with Dexcom and some other things that Lilly is working on. But when we last left this episode, the last time we talked at least in person, you over talking about the device that Lilly had been working on, can you give us an update on that Marie Schiller 7:25 I can and maybe to be helpful Stacy just to remind the audience of what we've been working on. So Lilly has a personalized diabetes management system that is incorporating inform delivery devices, software and analytics. And obviously that will be combined with glucose data and other contextual information in order to hopefully to improve diabetes management. We have two parts of that system. So we obviously have a pen based platform where we'll be using our refill disposable insulin pen, with data coming in from glucose monitoring devices and be able to combine that with different elements of care in that platform. And then the pump based platform, which would be a hybrid closed loop system, integrating the the pump itself in with a continuous glucose monitoring and an algorithm as well. So that's the journey we started on. I think we were we had not just kicked off the program when we last talked a couple years ago, but it was certainly early in the development program. It's been a frankly, an awesome couple of years is advancing both of those areas we had started I know when we last talked, but with the development agreement with Dexcom, which we have continued to advance our relationship with Dexcom and now have entered into a global commercialization agreement with them. We continued our clinical trials with the pump based system we'll be talking about Some of the first clinical data will be shared this coming February at the the conference in Madrid at TCU. And on the connected pen side we have, so we secured a supplemental drug approval for the pen that will be compatible with the personalized diabetes management system. And we're in the midst of working with the FDA on the other components of the system that we will need to bring forward and launch the entirety of that integrated solution. Stacey Simms 9:35 So there's a lot of moving parts, there are a lot of different things going on. You mentioned the clinical trials, and let's kind of take this step by step. I'm sure you can share the information ahead of the release. But what were you looking for this was for the pump system. Was this a safety trial? Was this an outcome trial? Can you share any information Marie Schiller 9:55 for you know, I won't go into any details that we will be sharing at the conference, but As has been seen with other products going through on that hybrid closed loop system, we are focused on showing that the system is functioning accurately. So we are looking at that first stage looking at different you know, stress situations with the system making sure the system is responding as we would expect it to respond. And obviously as part of that is the safety of the system. Stacey Simms 10:27 So, as we're talking about this system, what's so intriguing about it to me is that it is a pump, but it acts more like a pod. At least it did when I last saw it or I saw a mock up of it even so is it still that way it's very teeny tiny, but it it acts as a tube pump with a very small tube that goes into a traditional inset Is that still the hardware? Marie Schiller 10:47 It is so we what we like to call it is that is a hybrid system meeting on the days that you want to carry it and put it in your pocket or wherever is your choice of carrying it. You could use a standard length infusion set or a long infusion set, whatever your preference, but on days that you wanted to wear it, and adhere it to your body, you could do that. And so it would still work with a standard catheter infusion set, but you would obviously be using a shorter tube in that instance, if you choose to wear it on those days. Stacey Simms 11:24 You know, it's funny, Marie, I've I didn't ask this when I first saw it two years ago, and I keep thinking about it, because now tandem has a I don't know where they are in their development stage. They have the T sport which sounds very similar that they're hoping to come out with. How do you actually were these tubes, tiny tubes, pumps, the hybrid pumps on the body? Did they just kind of dangle from the tube? Do you stick them to your skin? Does it work? Marie Schiller 11:47 Yeah, I can't comment on tandem. It's a great question though. Stacey, you know, obviously with our so there's an adhesive component where you are wearing the pump. It's not obviously on the infusion set right? But ours is where you would be adhering to the pump itself. Stacey Simms 12:04 And my frustration was I thought you're gonna say I can't tell you anything. But that's great. There's like a sticky on the pump and it sticks to your skin. does it stick to the body? Like a? Is it like a Dexcom? sticky? Or is it like the ever since which is more like what I call a color forms? Remember those color forms? You could take them on and off and on and off? Is it more like that? Or is it once it's stuck to your skin? Then you kinda have to pry it off. Marie Schiller 12:34 Yeah, I may, at this point, just pull back a little bit because I think I may be going down. I may be going down the rabbit hole as if I'm trying. I feel like I'm going to be playing a game of charades as I try to walk you through how the system works. And it may be more confusing than helpful. So yeah, as I mentioned that you have the ability to wear it and there's an adhesive system and we'll leave it at that. Stacey Simms 12:59 All right. But it's very interesting. So then my next question is, do you know if Lilly is going to be developing new infusion sets? And I asked this because I've shared for years and years, and I'm not the only one, that I really think that the traditional infusion sets are the weak link of any pump. They're just not great. And I'm always hoping that somebody is going to come up with a better one. Any chance, this is part of your plan? Marie Schiller 13:24 as we've talked about, look, we are looking at all components of the system. Right. And so we are starting with our core system, we're looking at all aspects of the system. I would say, you know, it's hard for me to say yes or no, on that side. I think we're looking at the need in the marketplace. Right. I think on that infusion set side. I'd be curious to sort of hear your experience with that. I think in in some of the research we've seen, it's different sort of aspects where people would say they'd like improvement. Clearly. Extended wear is something that we're hearing a lot I know jdrf and others Groups are focused on that. But what areas are high on your list Stacey Simms 14:03 that they work better, that that you can push more insulin through them that they don't get kinked and they don't get occluded. And they don't need to know that they're, they're not as damaging to the skin that they're not as painful that I feel I could go on and on. But truly, I really think they're the weak link of pumping and you know that they even what was the one from BD for a while like it had a better flow, it didn't just float the bottom of the canula even to be able to rotate it there was one you used to be able to spin you know, that would go with that would turn you know, there's there's so much so sure, I'll be in a focus group anytime or recall me. Marie Schiller 14:38 I'm taking furious notes here to make sure I get all of this feedback because this is exactly what we need to hear, you know, and exactly what we're excited about. I think we just continue to feel that there are so much room for improvement on these systems. Albeit we've made a ton of progress today. But these are all of the nuances right then each of us I deal with every day and why, you know, the more innovation the better and space where we can continue to look at all of these elements and make progress. Stacey Simms 15:09 So let's talk about the pen system too, because that's very useful and very fascinating. The pen is, as you had already said, It is not just an insulin pen, it is part of a connected system. Can you talk a little bit about what that means? We've mentioned Dexcom. already. I assume you use your phone. You can see where you've been it recommends dosing, that kind of thing. Right back to my talk with Marie but first One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It is 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. 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 calm and click on the One Drop logo to learn more. Now back to Marie answering my question on what a connected system means and whether the pins help keep track of dosing as we expect. Marie Schiller 16:28 It does so as we mentioned, it's based on the the quick pen platform is is a core component of it. So if you look at the quick pen platform that we offer in forums and we have our current basic lar influence and humor log both in the half unit one unit and two units, and then we have our ultra rapid insulin that's under review today. So as in and I don't know what's your son ever on 10 before you move to pump, Stacey Simms 16:58 he was actually uncertain Because the dosing was so teeny tiny, and they didn't even have half units, but he was on quarter units. But we have since we use pens a lot, because it's a backup for him. If he gets to fly and feels like his infusion set isn't working, he'll take a shot. And he is also a little unusual in that we use. We use a long acting shot with the pump. So he does use a pen every day. Marie Schiller 17:25 Okay, well, then you're familiar with it. And I can share with you that I was a pumper for years. And now I'm back to two shots, as we all sort of go through those journeys, but what I was going to describe is when you're taking those informs, especially as you know, you're taking the long acting in the short acting. There are just some basic elements that we still don't have today, right? You're running out the door, you're trying to get your son to school or I'm trying to get to work that I did I just take that shot or not again, remember right and just some of the most the simplest aspects of being able to be like up there. If I took that dose, right, and being able to have that check in place, but there are, you know, as you move down that level of sophistication, most people on informer fire some level of glucose testing, whether that is blood glucose monitoring, or as we're doing with the continuous glucose monitors. So the idea is, is that you would have the informed data from the pen, you would have your glucose data, whether that's blood glucose or CGM data, and you would take that in integrate them into this diabetes...
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Kerri Sparling Interviews Stacey for "Children With Diabetes Celebrating Storytellers"
03/05/2020
Kerri Sparling Interviews Stacey for "Children With Diabetes Celebrating Storytellers"
The tables are turned this week as Stacey gets on the other side of the microphone. Kerri Sparling, writer of the long-running and popular blog SixUntilMe and now Children with Diabetes board member, interviews Stacey about her experience raising a child with type 1, what led her to claim "The World's Worst" title and much more. This is part of Children With Diabetes Celebrating Storyteller series. "There are some amazing storytellers in the diabetes community, and many of those folks have spent years honing their craft through blogs, books, and videos. Their stories of life with diabetes bring our community closer. Sharing stories helps make the journey with diabetes less isolated and instead paved with hope and camaraderie. Stacey was excited to be selected to be part of this storyteller series, and even happier to be interviewed by Kerri. read the transcript below or, of course, listen to the audio on this episode. ----- ----- ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript: This episode of diabetes Connections is brought to you by the world's worst diabetes mom real life stories of parenting a child with Type One Diabetes available as a paperback ebook and audiobook at Amazon and at diabetes connections.com. This is diabetes connections with Stacey Simms. Welcome to another week of the show. I am so glad to have you along. As always, I'm your host Stacey Sims. This is a little bit of a different week around here because we released our regular Tuesday interview episode early. If you haven't listened to that yet, it was all about the corona virus and basic information that people with diabetes need to know. Thanks very much to Gary Scheiner CDE and the director, founder of integrated diabetes services. He is always a very calm and informative presidents. He also has a great sense of humor, but I wanted to get that show out. pretty quickly, because you know, of course, as the situation is changing, podcasting is tough to get breaking news out. But we wanted to make sure to get basic information from a good source out to the diabetes community, because I've been seeing and I'm sure it's only gotten worse, a lot of rumors and the beginnings of some panic. So I hope you listened to Gary or read the interview as well, because I put it out as a blog post with just that interview, as well as a transcript with the entire episode. And I hope you've been able to share that a lot of people picked up on it and I really hope it's helped give you some good information. We'll do more as the situation changes if we need to get more information out there. And then this week is a little different because I usually do a mini episode here, where I'm just talking about one topic kind of an editorial, but I'm going to be bringing you an interview that Carrie Sperling did with me now carry most of you know, wrote the long running blog six until me she retired that last year. She's doing a lot of great work with children with diabetes. This is the group that among many other things, puts on those great friends for life conferences, the big one in July every year, smaller regional conferences throughout the year. And they do a lot of really good work in terms of information, and community outreach. So Carrie is doing some of these interviews and I was so excited to be able to talk to her. You may have seen it, they put it out as a YouTube video and I will link that right up. You want to stop right here and go to the video instead of listening. It's the exact same interview except to get to see us and it made me realize I need to work on the lighting in my office. But the information I hope is good. We talked about what led me to write the world's worst diabetes mom a lot about you know, parenting Benny, my son diagnosed right before he turned to 13 plus years ago now, privacy issues Carrie has shared this in her own life. You know, how much do you share online? How much do you not? How do you decide that? And it was really a fun conversation. It's always a A little weird to be on the other side of the microphone. Unknown Speaker 3:02 It's not Stacey Simms 3:02 my comfort zone. But here we go. Anyway, here is the interview that Carrie Sparling did with me. Kerri Sparling 3:09 I am here today to talk to Stacey Simms Stacey Simms 3:12 about this, oh my goodness, Kerri Sparling 3:14 I had to climb on my bookshelf to get it down because I accidentally put it on the shelf that I couldn't reach without a stool. So thank you for giving me morning exercise for that. I appreciate it. But um, I Okay, let me make this more formal. I am very appreciative that you've taken the time to talk to me, and then we're going to broadcast this to the children with diabetes community and then share it through our different channels. So thank you for making yourself available. I know this has been chaotic, getting them on the line. Stacey Simms 3:38 This is what I get out of TV, when really we just need to stick to radio, but I really appreciate it Carrie. Thank you. Kerri Sparling 3:43 My pleasure. And so I want to jump right in because I've already kept so much of your morning already. So just if you could for a minute just introduce yourself to the community that may not know you already so they can get a sense of who you are, and then we'll get into the book. Stacey Simms 3:54 Oh, sure. So my name is Stacy. My son Ben. He was diagnosed more than 13 years ago, which is bananas, time just flies, but he was not yet two years old. He was diagnosed with type one when he was 23 months. I have an older daughter Her name is Leah. She is three years older than him over there four years apart in school and I say that cuz she's a freshman in college now and he's a freshman in high school. I started a blog about a month after Ben he was diagnosed at the time I was working as a morning radio show host I had been a TV anchor and reporter that's the I hate pictures. Because it's all the makeup and the hair and the you know, I'm looking at myself like my headphones are so big on this is not good. I distract myself. Um, but then I started the blog and then four years ago, I started a podcast and then last year I wrote the Kerri Sparling 4:39 book. That's that is awesome. And so so you've been sharing a lot of your family's experience and your personal experience with centered around diabetes, but going right into Stacey Simms, the world's worst diabetes mom. So this title obviously feels a little tongue in cheek because you are clearly very involved, clearly clever and also on top of things that are going on in your kids. In your family's health, so why did you call it this? Stacey Simms 5:03 The book title came about because I had actually been working on a parenting advice book about raising a child with type one for a couple of years. And it was really boring. And it was really like had been done before. There are so many great books, especially, you know, from a layperson perspective, there are so many great books by medical professionals that can really tell you how to better manage, and I didn't want to just say, here's our story, and here's what I think. And I was writing that book, but I wasn't, I wasn't jazzed by it. It was kind of just writing, you know, old blogs and my publisher and said, Oh, put your old blogs together. We'll just put those out. You know, that just didn't sound right. To me. No friends really resonates like old blogs like it. So I was in a Facebook group, having a discussion like I still do, I foolishly still go into Facebook groups because I want to help people and I get help to still and we had a disagreement and it got heated. I really I felt strongly that this was an okay way to manage and the person was so mean and said, you're gonna you're gonna kill your child you're you're terrible parent, you know really went there. And I just said, Well, I must be the world's worst diabetes Mom, you and I slammed the computer shut and I walked away and I was like, Oh my gosh, this is it not not even think about the book but this is who I am I want to talk about making mistakes. I want to talk about living with less fear. I want to talk about not always being a slave to your beats. Are you okay? Do you need a juice box? Unknown Speaker 6:33 Sorry, and beeping, then one of those days, but everything is fine. Thank you for asking. Stacey Simms 6:36 But I just wanted to, I realized in that moment that I did have something to say. And it wasn't just about the old blogs. And I went back I screenshot of the conversation because I thought well, maybe this guy is bananas. It's gonna come after me. But I also deleted it. Because we didn't need my anger out there either. It wasn't just Hey, I was ugly too. So I got past that and I thought let's talk about all the mistakes I've made because we Made a ton of mistakes. And it's not a question about being a bad parent or a good parent, sure, you're gonna make mistakes with your kids, whether they have diabetes or not. And let's use those examples of mistakes to talk about resiliency and confidence and, and I think my son is better off for all the mistakes I made. Kerri Sparling 7:16 I hope that applies to parenting outside of the realm of diabetes, because I'm not a perfect mom myself. And so it's reassuring to hear that stumbling leads to success, even if it's a modified version of the success you thought you were going towards. So I really appreciate that. And I also like the fact that it's not like here's how to be perfect by Stacey Simms, because that really puts people on their heels like you can't take advice from someone that you have on a pedestal it's always a lot easier to have a peer to peer conversation and that's why I feel like your book reads through it very a resonated for me and I'm an adult the diabetes not raising a child with diabetes but reading your perspectives gave me a lot of insight on maybe conversations that my mom and I never had or my email just think the cross Can you see that when it comes across You know, you're supporting the note cuz he's just some weird emails. But I just have a couple notes. I just wanted to look through this. But when I was reading through the book, there's the story of the first night that you guys are home with, with Benny. And, and it hit me really hard because I was thinking about my own two kids. And like I said, they don't have diabetes, but I was putting myself in your position. And it's so easy to be the person with diabetes from my perspective, but it is very, very different to be the person who carries just as much, but it's like 10,000 feet away for so much of the experience. And so do you think that it's important to have those stories shared like stories like yours and stories from adults with type one, so that we can kind of create a, an amalgam story sort of thing, like, why is that important? Stacey Simms 8:37 I think it's a great question, because it's it's so important to recognize that the two experiences run in tandem, but they are so separate, as well. Right? We're never really going to separate them. We can't pretend they're the same. So a person with diabetes is having one experience a parent of a child with diabetes is having a totally different experience, obviously tied to By diabetes, and I, you've already said, Oh, I think it's you know, it's worse to be the parent, you've implied that by something you said, which is fine. I mean, I almost every adult with type one I know, says all my mom, it was so much harder on her. Kerri Sparling 9:10 We're not saying it to make you feel better. We're saying, we believe that fun. Yeah, Stacey Simms 9:14 I understand. But I disagree, because I'm not beeping, and I can walk away from it. But at the same time, it's not a question of comparing, right. And I didn't mean to put you on the spot. I'm not saying that you're doing that. But I think it's really important that we see these experiences as equally important, but very different, but then tied together. So telling all of these stories. I'm hopeful that Benny, when he gets a little older, we'll look back and read it. And he knows what he knows the stories we actually shared that ahead of time. We talked about what I could put in the book, but I'm hoping that he'll see it and kind of think, Oh, well, that was not my experience, but I'm glad to know it. Kerri Sparling 9:50 Well, of course and you were saying it's not it's it's not about comparing them. I think it's about making a cohesive story around them like my low felt like this, but it looked and felt to my mother like this and meshing those two stories together together gives us a broader experience touch point. And I think that's so important, especially for like a teenage kid who might pick up your book and read it. And when they're in that angsty, angry part of diabetes, and they might be so furious with their parents to get your perspective on that might help segue a good conversation with their own parents. That's why I don't think this book is just for parents of kids with diabetes at cross collateralize is the whole community you know? I don't know. I think that's accurate. I'm gonna toot your horn for you that way. Stacey Simms 10:28 One thing I think it's really interesting to talk about is you mentioned like the not perfect parenting thing. And I think it's we're under pressure, regardless of diabetes is parents right? You can't win you really can't. But I also think it's funny when you look at a lot of parenting blogs and parenting writings. It's either I'm a perfect parent and you should aspire to look like this. It's perfect Instagram photos or whatever, you know, look like us do like us eat like us. Or you have the oh I don't know what I'm doing. Unknown Speaker 10:54 I'm so crazy on motherhood is that you know, I'm a man I look at my and I really that doesn't speak to Neither, Kerri Sparling 11:00 right we are middle lane. Stacey Simms 11:02 We are smart, we are strong. We are sometimes a mess. We are sometimes perfect. And I really I'm not. I know that sound like I was making fun. You know what I mean? If these archetypes, especially women we get put into, right. I'm a hard driving success story or I'm so clumsy. I fell into my man, you know, I mean, I hate that. So I tried to really in this book, kind of encapsulate, you know who I am, but who I think a lot of other moms are too, right. competent, confident, Kerri Sparling 11:29 but not having it all together. Now might be an important part to bring up the fact that I'm wearing normal clothes from the waist up, but sweat tears from the waist down. So like I think that sort of is the it's the template for that. They need you there we go. Wait, you you would actually skipped ahead to something I wanted to ask you about. Sorry. Should No no, that's fine. This is good, though. When you're using the questions, I know and I don't normally write my stuff down. But I'm organized today. Um, but yeah, we talked about when you first started sharing your stories, and Benny was home that first night That sort of stuff. And you used to write about Benny's personal experiences and yours. And as he's gotten older, and his experiences become more his, you've said that you've stepped away a little bit from telling his stories and have embraced. I can't describe it for you. But like, what, what's it like to decide to share x in the beginning, and what makes you transition to the y? Stacey Simms 12:19 I think it's such an important conversation. It was interesting in the beginning, and I do wish that I'd given my kids just a little bit more privacy by changing their names, or giving them nicknames. The problem for me was I was already on the radio. And we had a show where it was mostly political news. But we did talk about our personal lives a little bit. So my listeners knew when I started at that station, I had a one year old daughter. And then when I was working at that station, I was pregnant and then I had a baby and here's Benny in the hospital, you know, it was a different experience than just blogging. So it didn't really occur to me at the time and social media. Certainly what it is now isn't wasn't then what it is now. It was a different experience. But when you have a toddler, you have a baby, I mean, even going back, I was Careful at the time not to overshare I but as he got older you realize, you know people are reading this people are looking at this. There were there were only some experiences that I felt comfortable sharing and it wasn't just the good stuff, right? We shared things that things went wrong. I thought that was important. But I'm I'm on the record. I sound like a broken record. You know, I don't share my Sunday one. See, I don't have that. I don't like you know, do not share photos of your child in distress. You know, no hospital pictures. I wish I had pictures of him in the hospital and he was diagnosed for me. Sure. But you know, we didn't have our phones with us. 24 seven at that point, especially didn't have cameras on them, which sounds so ancient. Kerri Sparling 13:43 I mean, this is what it is right? Like when I was diagnosed with diabetes, I had to pee in a bucket to test it. So like things had to not a bucket. I mean, let's be realistic about this. But you know, things have progressed and with it the the conversation about what to share and not to share and so, I mean, you talked already about not sharing his anyone see? And I think personally, I am on the same page with you about that no one needs my personal data points because their mind in their personal, but that there's a broad spectrum of decision making processes around that sort of stuff. So what made you decide not to do that? Stacey Simms 14:14 Well, I think I'll just put a caveat in there, I think, to not mindlessly share, right? Sometimes it makes sense if you're trying to talk through something or get advice or share a situation or, or say, hey, look at this difficult situation we worked through and now we're celebrating I mean, just mindlessly is the word I tried to use about it. But what changed was when he was about seven, I think I read something by Moore McCarthy, who is a mentor of mine, and she's longtime blogger, author, I mean, yeah, faculty, you know, I probably saw her speak there and got this information, but she really encouraged me and others to think about it. And once I stopped to think about it, I realized there's no reason for my seven year olds health information to be on the internet. I'm not posting my weight and my cholesterol. And you know, my blood pressure. It's the same thing. We don't see it that way, right? But it really is. And that once I thought about it, it changed everything for me and I started sharing more, you know, great endo visit no changes, everything's on track or great endo visit. We had a whole conversation about changes we have to make sure sometimes like bad, you know, bad can be good when you get the information. Yeah, I love the finger quotes. Kerri Sparling 15:27 But I feel like that's an important part of it too, because it's not truly bad or truly good. There's a right Stacey Simms 15:32 dial up stations get better when you get away from the numbers. I agree. You know, you can you can have more in depth about how you're feeling and what advice you're looking for. And that sort of thing. So I've shared with friends when I've said old I'm upset about this, or can you help me with that? That's different. Kerri...
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