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:
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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:
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
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? Here's how - blog post
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
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.
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.
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,
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.
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.
Hi, my name is Maddy. I'm from Arizona, and I'm 14 years old.
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
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.
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
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.
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
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 watch the full interview here
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
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.
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 diabetes when it comes terms in terms of managing fever. Yes, ibuprofen is a anti inflammatory, ibuprofen at this point. We don't know if it's safe or not. My recommendation, though, is is to say, you know, we want to make sure you're drinking. We want to make sure you can keep fluids down. And if you are so uncomfortable that you can't drink or keep fluids down because of the high fever, then yes, we probably should treat the fever and at first maybe you treat with IV or with acetaminophen. But if all you have is ibuprofen, and you're you're miserable, at this point, it's still unproven that ibuprofen will make Covid 19 worse or prevent you to impair your ability to fight it off.
Stacey Simms 18:27
Well, and will continue to follow that obviously,
Dr. Mark Vanderwel 18:29
just new information.
Stacey Simms 18:31
It's unproven, but I mean, I can't lie. I still you know, I take ibuprofen here and there I immediately was like, No, because it's it's scary.
Dr. Mark Vanderwel 18:39
Stacey Simms 18:41
I went and checked everything in the house. How much acetaminophen do we have? What What else? Oh, because acetaminophen isn't so many cold medicines, sir. Let me ask you that people with type one and type two people with diabetes. Let's just say that who use CGM know that with Tylenol acetaminophen come warnings with death. calm. Now my understanding is Dexcom je six you can take 1000 milligrams of Tylenol safely by safely means it's not going to burn out your sensor you can is nothing to do with them anything beyond the sensor we're talking about here is that what you were understanding?
Dr. Mark Vanderwel 19:15
My understanding and just for clarification even in previous versions of Dexcom if you're using g five if you're using g four acetaminophen does not prevent it from working. It just may mean the readings it gives you are not as accurate as they might be without acetaminophen in your system. But that's also my understanding for the for the Dexcom g six,
Dr. Mark Vanderwel 19:35
just think or stick. Agreed?
Dr. Mark Vanderwel 19:37
Yeah, if you feel your ducks comm isn't accurate whether you have acetaminophen on board or whether you don't have acetaminophen on board, poke your finger.
Stacey Simms 19:46
Right? Which means that a lot of people need to make sure that not only do we have a meter and test strips, but that we have the batteries or that our stuff is plugged in because um I know A lot of us are very reliant on CGM. Let's just put it that way. And I'm looking at my phone, not to be rude, but to look at the next few questions. So as you're watching,
Dr. Mark Vanderwel 20:10
I know you go Okay, fair enough.
Stacey Simms 20:15
That was more for these guys. But seriously, um, I'm curious too, with, with not knowing when many of us will see our children's, endo next, or if we're adults are watching. Are there things that we should be doing? To check in between? I mean, I know that I'll give you an example. You always check penny for you know, scar tissue.
Dr. Mark Vanderwel 20:40
Right? Like lipohypertrophy. Exactly. Okay,
Stacey Simms 20:42
so go for it. Tell us what we do. Yeah,
Dr. Mark Vanderwel 20:43
so, so lipohypertrophy is when you will put your infusion side in the same place too often, or you give yourself insulin injections in the same place too often. And the downside of that is not only does it look funny, but it can prevent the insulin that you give yourself from getting into The bloodstream, and then it doesn't get from the bloodstream to the eventual target tissues of liver and muscle. So if you are thinking you're giving yourself a bolus, but you're giving it giving it into an area of life or hypertrophy, then perhaps the insulin isn't doing what it needs to do. And that can obviously be dangerous and increase your risk of decay. So, yes, I do think that parents should be checking your child for life or hypertrophy in the same way that their endocrinologist probably does regularly. And the thing that I would probably say is, the easiest way to do is just make sure it doesn't feel like a tricep, you know, flex your tricep right here. And you can feel a little bit of muscle tissue right there. And light by hypertrophy feels a lot like that. It feels kind of clumpy. It doesn't hurt the child, but it feels it like oh, it seems like there's a big clump of subcutaneous tissue here. You can even see like oh hypertrophy a lot of times and I might wind up doing that when I'm doing virtual visits is just have the kid in the room and say, Show me where you Put your palm but just look to make sure it's not looking clumpy now, I'm not going to do anything. Like make them show me their family or anything like that. But you know, their arms, their belly, that sort of stuff. Yeah, I might do that at the opposite.
Stacey Simms 22:13
That makes a lot of sense, though. You know. And another thing I was looking at my list of questions when we were talking about supplies, one of the interesting things is people seem to be posting quite a bit about not being able to get those little alcohol wipes. Yeah, we haven't used those in a very
religiously for years. Sure, sure. Is that something people need to be concerned about? Should I be getting out the rubbing alcohol and checking to make sure as a pediatric
Dr. Mark Vanderwel 22:36
endocrinologist I should say the standard line Yes, the proper protocol for either giving an insulin injection or putting a new infusion site in or putting a new Dexcom in or poking a finger is to wipe that area with alcohol first. That being said, You are probably not the only family. I take care of Stacy where your child does not use rubbing out Color an alcohol swab every time. So yes, we want clean skin. We know that giving an injection or anything that punctures the skin. without alcohol, there is a slightly increased risk of getting an infected site. There's bacteria everywhere. Obviously there are viruses everywhere. But when we're thinking about using alcohol swabs, we're thinking about killing the bacteria on the skin or removing the bacteria from the skin so that you can give a cleaner injection, or a cleaner infusion site or a cleaning Dexcom or cleaner Dexcom site etc. So if you can't get alcohol swabs, you still need to give your child insulin and you still need to figure out what her blood sugar is. So all in all, what's better to give a shot with alcohol to give a shot without alcohol swabs or to give no shot at all. They go in that order best is with second best is without third best is no insulin at all in that's not best. That's bad news. So
Stacey Simms 24:00
So, you know, another thing, that I have a whole bunch of questions here that I'm trying to get to the right order to go in,
when, when we're talking about these in between visits for a long time, and again, I know that you may be limited as what you can say, because we are talking in official capacity. So some of this is on, you know, I don't say on the record off the record, but you'll understand. So there are a lot of people who are very comfortable adjusting pump settings. Sure. There are a lot of people who aren't, you know, what's your advice for a family? And this was a question that came up in our group. I'll say, Michelle asked this, how do you advise or empower, newer diagnose parents on taking pump settings into their own hands? You know, are there ways to tell when something is a basal issue or a QRP? Sure.
Dr. Mark Vanderwel 24:46
Yeah, so first of all, I'm speaking for myself, I'm not speaking for every pediatric endocrinologist out there. I feel comfortable with my patients adjusting insulin settings without my permission, you do not need my permission to adjust your pump settings or your insulin dose. Is, however other pediatric endocrinologist may feel differently. I'm not speaking for all of us. In general, if your basal rate needs adjustment, that means that your child has been going a long time without eating. And her blood sugar either goes up, or her blood sugar goes down in the absence of all other factors. Best time is overnight. So if your kids waking up with a high blood sugar in the morning or higher than it was when he went to bed, that probably means he needs more basal. If he's waking up with a lower blood sugar than it was when he went to bed in the absence of the correction dose at nighttime, then chances are he needs less basal insulin. And kind of the same thing goes for carb coverage, if you notice every time after a meal, and I'm not talking about just that postprandial spike on a Dexcom because that is related not to the insulin quantity but to the timing of the insulin absorption. But let's say two hours, three hours, three and a half hours after every meal. If your kids blood sugar is going up that means That she needs a stronger carbohydrate factor. And remember, Stacy, I know you've written about this in your book, the factor is the denominator, right. So of insulin to carb ratio of one to 10 is stronger than insulin to carb ratio of one to 15. It's the denominator of the fraction. Similarly, for the instant correction factor, if you're giving a dose of insulin through the pump, or through the sliding scale that you've written down, and your child's blood sugar doesn't come far enough, universally, don't make adjustments based on just one thing, let her wait for a pattern to develop. But if you're noticing that you're that your child's blood sugar never comes down far enough after you give them a correction dose. That means let's make the correction factor stronger. And by that I mean maybe change it from 60 to 50, or from 50 to 40 or from 40 to 35, etc. Vice versa, if you are scared to to give a correction dose because your child's blood sugar because it doesn't come in or comes down too far after for extra dose that make it a little weaker. And by doing that I've seen baby move it from 50 to 60 From 60 to 75, or 75 to 90, etc.
Stacey Simms 27:04
So if you're watching this, and I covered my face and kind of made a joke, the reason is because in the book, I do talk about this, but I have definitely made the mistake of thinking that a smaller number meant less insulin.
Dr. Mark Vanderwel 27:18
So it is confusing. It is it, just think about it in terms of the denominator of the fraction, a half a pizza is bigger than a quarter of a pizza, even though two is smaller than four.
Stacey Simms 27:30
You know, and that brings, I know this, this interview is getting a little bit away from Covid 19. But we've got plenty of time to talk about that. The just a follow up on the calling your physician and you know, there are a lot of wonderful presenters like yourself, who will take a call every day for a month from a nervous mom of a newly diagnosed kid. But there are a lot of parents who worry that they're bothering the doctor for things like that. Obviously, it never bothered me. But all kidding aside, can you assure people that if they're calling for instance adjustments that
Dr. Mark Vanderwel 28:00
it's okay. Yeah, it is absolutely. Okay. Like I said, I want you to feel empowered to do that on your own. But if you need help, we are there to help. And my office still has CDs answering the phone during daytime hours, you can take blood sugars and help make adjustments. The physician on call over the night or weekend can also do that, although it's probably easier to do that during office hours while we have CDs answering the phone because they can pull up the child's chart whereas if you call me on a Saturday afternoon, I'm not going to have your child's chart at my fingertips to make those adjustments. So yes, but please don't feel you are on your own. And please don't feel you are bothering us. Yes, when we take call. We also are seeing patients in the hospital and we are usually seeing patients in the office although now we may be doing more virtual visits. We are doing other things. It's not like all we do is just feel phone calls. We are doing other things and so we appreciate that one. If it's not an emergency, if it can wait until morning. That'd be great to wait until more But there are emergencies. And we also understand that when people have a child with diabetes, they worry at three o'clock in the morning, and if they're worried enough, please call us. Yes, that's what we're there for. But remember, we also are not general pediatricians. And so when it comes to Covid 19, if you are worried that potentially your child may have been 19, that is a better question for your primary care provider rather than us. We are not your general pediatricians. However, if you're feeling like your child was getting sick, and you're having trouble managing their blood sugar's because they're sick. That's a question for us.
Stacey Simms 29:32
Well, and that was what I was just going to ask if someone says, Oh my gosh, I think my child has Covid 19 and they have type one diabetes, what would you advise them to do?
Dr. Mark Vanderwel 29:43
I think we're still learning more and more, you know, testing is not really readily available and everything that I've heard about testing to this point, it's been difficult to get a test now hopefully, that'll change soon. Um, and However, our primary care providers are at the frontline of giving of getting people coded testing. figuring out who needs to be tested? So I would defer that question to your primary care office because they will have the most up to date answers about whether you should simply, well, we should all be quarantined ourselves, right, we should all be practicing social isolation, but especially if you have any suspicion that you or your child has Covid 19 you need to stay in your house. And you do not need to expose any other people to this. So in that situation, though, whether do you bring your kid for a Covid 19 test? Or do you just try to isolate them and pray that they get better and again, they should I mean, kids with type one diabetes are not at greater risk for developing Covid 19 or having the respiratory complications, it just makes them more likely to get ketones. So anyway, um, if your kids healthy enough to just stay at home and continue that quarantine. Right now, that's probably what we're recommending, although things may change anytime,
Stacey Simms 30:57
and I guess you've answered this, but I'm going to ask them Again, just in a different way, to be perfectly clear the evidence as we're speaking right now, would say that if a child comes down with Covid 19 has type one diabetes, there is nothing different
Dr. Mark Vanderwel 31:11
to ground at home. Just Just differently from a diabetes management perspective perspective, make sure they're hydrated check for ketones if they're actually acting sick, even if their blood sugar seems fine. Um, follow your sick day protocol. But yes, nothing different compared to your other children who might not have type one diabetes.
Stacey Simms 31:32
Um, something else I wanted to ask. Gosh, I should have closed the blinds. Whoo. It's getting hot in here. One of the things I meant to ask when you talked about the time in between visits because I had a lot of questions on this in our Facebook group. People are saying like me, Benny's appointment was supposed to be in two weeks, we'll do a virtual visit, but I assume we're not going to get that a one. See that? We usually get quarterly.
Do you? Look we have a CGM so I can see what it probably is. But do you ever recommend a homemade one T tests.
Dr. Mark Vanderwel 32:01
Okay, you and I, about a one says yes, yes. So again, I'm not speaking for every pediatric endocrinologist out there, but people definitely overrate the importance of A1C, and so many people come into my office on pins and needles because they're so nervous about what that number is going to be in. As we've said before, you've heard me say it. And I think that's one of the reasons you and I get along so well is because we have a similar perspective, and everyone has different perspectives. But my perspective is, the ANC is just a number. And it's right now the best number we can get in a six minute turnaround test, tell us to summarize blood sugars, but it's just that it's just a number. And as we have more CGM data available, I think we're going to learn that time and range, maybe an even better predictor of avoidance of long term complications, because that's what we're talking about, right? We're talking about not necessarily trying to get your kids A1C to be less than x. We We are talking about trying to help your child be as healthy as she can be when she is 85 or 90 years old, right? And so it's not about the agency, there are plenty of kids I take care of where I'm worried. This kids having way too many low blood sugars, it's affecting their lifestyle. And I'd be much happier if they're a once you jumped up a half point or a full point if they had fewer low blood sugars. So my perspective on it once you may be different than many of my colleagues, I don't think it's worth it for you to check anyone see in the middle of between office visits, especially if you have the capability of looking at a continuous glucose monitoring system that can tell you time and rich.
Stacey Simms 33:38
Is it homey? Once the test even accurate? I've always wondered about
Dr. Mark Vanderwel 33:41
Yeah, I mean, I think so. I mean, I have not seen I'm sure there are studies out there comparing the home a woman c test to a serum drawn that means coming from your arm type of A1C test versus a finger poke A1C test, which we do in our office. Um, I honestly have not looked at those studies, so I can't answer your question. But my guess is yes, it's probably pretty close. Okay, so
Stacey Simms 34:04
I have another one. You know, all these people in my group know you very well. And the question, I've lost the question, Where did I put it? Ah, here it is. Okay. So it's a two parter. The first part is all about technology. Have you mentioned time and range? You mentioned CGM advice for parents. This is a question who says, Are we overly reliant on technology? Or is that a thing? Does she need to worry about being isolated? If something doesn't work?
Dr. Mark Vanderwel 34:35
Yeah, I mean, you use what you have. I mean, we didn't have dex comes when Benny was first diagnosed. We didn't have insulin pumps, when I was, you know, or there were they were out there, but they were not commonly used when I was a resident. Um, when my senior partner Dr. Parker was doing his medical school, they didn't even have finger stick blood sugars, right. And so diabetes management is changing and we not relying on technology, but the technology has been good. And it's helped make diabetes easier, not a cure, but a little easier unless you become a slave to that technology. And you can definitely overreact to the readings on a Dexcom. I know plenty of people who will not put their phone away because they always want to know what every second what their child's blood sugar is. And that's not healthy either.
Dr. Mark Vanderwel 35:22
I know what you're talking about.
Stacey Simms 35:26
I'm only half kidding. But yeah, nothing really can be a problem. I think the bottom line for that too, is if as you're listening, you think, gosh, I don't even know where our meter is. Or do I have test strips? You know, that's the kind of thing that you'll definitely want
Dr. Mark Vanderwel 35:40
to check but you do need to have a beat. You need to have a meter even when your child wears a Dexcom or a Libra or Medtronic CGM. You will need a backup way to check blood sugar. So yes, please have a meter and strips and lancets that's the finger poker available.
Stacey Simms 35:55
lancets we all have 5000 of those.
Dr. Mark Vanderwel 35:57
Dr. Mark Vanderwel 35:59
Last question was Do bow ties help you in your practice?
Stacey Simms 36:03
Dr. Mark Vanderwel 36:04
So, my grandfather always wear bow ties, you actually might be able to see him right over here at Grand Prix right over there over my shoulder. Always wear bow ties. Um, and so I got that from him. Um, and someone said, I looked smarter when I bought a bow tie. And I was like, you know, great. I like looking smart, even though I so, but to be honest, yes, um, especially in this age of viral transmission, you're probably not going to see me wear a tie when we do a virtual visit. And you may not see me wear a tie as much in the office in the near future. The reason that many of the pediatricians through Boston Children's Hospital other of the older pediatricians wear bow ties rather than long straight ties is because there's less germs from this than there are from something dangling and so I will for virtual visits, I probably will not I almost certainly will not have a bow tie on and for the for visiting the office, I probably won't either just to have one less thing on mice around me that can collect your
Dr. Mark Vanderwel 37:06
which is your grandfather in the medical field or, you
Dr. Mark Vanderwel 37:09
know, furniture industry.
Stacey Simms 37:13
All right. So before I let you go, because this is the first time I've ever had you on the podcast, hopefully not the last. But you know, it was in the interest of kind of feeling a little strange about, you know, that kind of relationship, my son's endocrinologist and that sort of thing. But now, I this has been great.
I'm curious, you know, you've been in practice for us at 15 years. I finished
Dr. Mark Vanderwel 37:34
my fellowship in 2005. So this is this will be my 15th. year as of July one or the end of my 15th year.
Dr. Mark Vanderwel 37:42
Yeah, we caught you
Dr. Mark Vanderwel 37:44
right at the beginning. Right, exactly. You were one of my may not my very first but one of my first patients now, I shouldn't say that. But yeah,
Stacey Simms 37:51
I mean, in the first couple of years,
Dr. Mark Vanderwel 37:52
right, exactly in the first few years. Exactly. So
Stacey Simms 37:54
I'm curious, you know, it's hard to sum up in just a few minutes, but from then to now. already mentioned the technology have things. It's kind of a pet question. I was gonna say, Have you seen things change, but I really want to know, like, how is it to be a pediatric endocrinologist from then to now? I mean, it's got to be difficult with insurance things and all that sort of stuff. But are you still happy? This is a field you chose?
Dr. Mark Vanderwel 38:20
Yes. I love my job. I love taking care of kids with diabetes. I kids with diabetes are only about 30 to 35% of my patient volume. And so I take care of 60% of other kids that I also love taking care of. It's the dream job. And yeah, I did not grow up thinking I wanted to be a pediatric endocrinology. I didn't know I really wanted to be a doctor. When I was in high school. I mean, there are some people that say they knew it from age two for me, that was not the case. But every step along the way, I've kind of thought yeah, maybe I do want to be a doctor. And then I go to medical school and yeah, maybe I do want to be a pediatrician and then I do my pediatric rescue. See and yeah maybe I do want to become a pediatric specialist etc so each step has kind of led me along the way and it's been a great choice I love taking care of your own as well as the all the other kids that I take care of. It's a dream job except for the paperwork.
Stacey Simms 39:15
Alright, so I'll check in with you again if I can during this time who knows how long we're going to be at home you guys doing? Okay, you can have your own everybody
Dr. Mark Vanderwel 39:22
do everyone's healthy. You know? I mean I I'm worried I mean, not about my kids not necessarily about my health I mean when one of those middle age brackets right but I'm worried about my parents, my grandparents who are still alive, you know, I'm, I am worried about I'm worried about the economy of not only our country, but the world I'm worried about, about the financial well being of my patients, even though I'm you can kind of get the sense I'm not really all that worried about the health of my patients with Covid 19 as long as they Following Sick Day protocols and but that doesn't mean go out and get exposed because obviously we need to contain this virus. I am worried about our world. But I'm not necessarily worried about the children that I take care of related to cope with it and I just don't want them spreading this terms to their grandparents.
Dr. Mark Vanderwel 40:17
I think you're absolutely right on that. Well, we will leave it there. And hopefully we can check back in and I will see you for a virtual visit. I'm sure we'll be hearing from
Dr. Mark Vanderwel 40:28
Stacey Simms 40:31
But I do appreciate it. Thank you so much.
Dr. Mark Vanderwel 40:33
Yes, thanks for getting the word out states you remember, wash your hands stay inside socially distinct yourselves.
Dr. Mark Vanderwel 40:41
But don't forget to call your parents all the people you love.
Dr. Mark Vanderwel 40:50
Diabetes Connections is a production of Stacey Sims media. All Rights Reserved or wrongs avenged
Transcribed by https://otter.ai
This week, the perspective of a diabetes dad. Tom Karlya has become much more than that since his daughter was diagnosed in 1992 and one of his sons in 2009, with many efforts extending through all parts of the diabetes community. But he says it all comes back to family.
We’ll talk to Tom about his story, his efforts with the Diabetes Research Institute – the DRI – his acting career – and much more. Tom is a tireless advocate and if you’ve never heard him speak, we promise you’ll be inspired.
In Tell Me Something Good – college sports, school scholarships and a young JDRF advocate answers Stacey's questions.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is diabetes connections with Stacey Simms.
Stacey Simms 0:26
This week, the perspective of a diabetes dad Tom Karlya has become much more than that since his daughter was diagnosed in 1992. And one of his sons in 2009. With his efforts extending through the community, but he says it all comes back to family.
Tom Karlya 0:45
Communication is the most important thing. And for the for dads to realize, to look for places where you can pick up the ball and run with it, where you can be part of your child's life. Don't let your wife do it. Make yourself part The solution
Stacey Simms 1:01
will talk to Tom about his story, his work with the Diabetes Research Institute, his acting career, and much more. Tom is a tireless advocate and if you've never heard him speak, I promise you'll be inspired in Tell me something good college sports school scholarships, and a young JDRF advocate answers my questions. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I'm so glad to have you along. I am your host, Stacey Simms. We aim to educate and inspire by sharing stories of connection when it comes to type one diabetes. My son was diagnosed just before he turned to 13 years ago. And I know there's an awful lot of stress in all our lives right now. This is a difficult time to say the very least. I'm not going to fill you up with a whole bunch of cliches here, but I do hope That as you're listening, you do know that even if it's online, the diabetes community is there for you. We're here to help. We're here to share stories. Hopefully your local community is banding together. I'll talk about that a little bit later on in the show. But this week's show is not going to be about COVID 19. It is going to be about some inspiration.
You know, with everything that's going on, I thought it would be really nice to have something like this. Tom Karlya and I actually spoke a while ago. And while I was listening back to this interview, like I do all the interviews, it struck me that it sounds a bit like a keynote speech that you would hear at a JDRF summit or another diabetes gathering like friends for life, because all of those conferences have been canceled. I really thought maybe this would make you feel like you're hearing a speaker at a summit. Right? So let's listen to it. Maybe in that vein, and if you're bummed out like I am that those conferences have been canceled. I mean, let's face it, they are for education. They're for learning. They're for resources, but they're also just to get together and see friends, right? You know, maybe this podcast or the Facebook group can be some support for you a place to hang out. So you can always email me Stacey at diabetes, connections calm, or jump into the Facebook group, which is diabetes connections with the group. I
know that diabetes makes us tougher to begin with, right? This is such a great community. And we do know how to help each other out because we do it all the time. Right? I think we're seeing some neighbors come together in the greater community, at least if where I lived, you know, do you need this? And can I go to the grocery store? People with diabetes, have been doing that for a long time. So let's just not stop doing it. Now. As you'll hear Tom say, as he has said for many years, you just don't do nothing. You can do a little something and really help.
And we'll hear from Tom in just a moment. But first diabetes Connections is brought to buy One Drop. And you know, I spoke to the people at One Drop and I was really impressed about how much they get done. Diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need get 24 seven coaching support in your app and unlimited supplies delivered, no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to diabetes, connections comm and click on the One Drop logo.
My guest this week was brought into the diabetes community back in 1992. When his then two year old daughter Kaitlyn was diagnosed one of his other children he has two other sons would be diagnosed 17 years later, but Tom Karlya jumped Writing to see where he and his family could help taking part in early JDRF campaigns, the Diabetes Research Institute and children with diabetes. I think Tom vo would tell you the best thing about him right now is that he's going to be a grandfather. The news came after we had spoken for this interview already, but his daughter Kaitlin, and her husband Andre, are expecting later this summer. And yeah, that's the Kaitlyn diagnosed as a baby herself basically back in 1992. Here's my talk with diabetes dad, Tom, Carl. Yeah, Tom, thanks so much for joining me. I cannot believe that I'm just now finally talking to you for the podcast. I appreciate it. I know how busy your schedule is.
Tom Karlya 5:42
Wow. They Thank you, to you. I mean, it's it's you know, I guess they say when people are busy, they're busy. And those are the type of people we like to hang out with. So I know how busy you've been, how busy I've been, and now the twain has met. So that's terrific.
Stacey Simms 5:55
So much to talk about here and I want to talk about your you know, your experience. ances over these many years, but let's start by, you know, your work with the Diabetes Research Institute foundation. Do you mind telling us, you know, for people who may not be familiar, what is that?
Tom Karlya 6:13
The Diabetes Research Institute in the foundation is is has support for the Institute. It is all the money that the foundation raises goes to the Diabetes Research Institute, which is an 87,000 square foot building that sits on the campus of the University of Miami about 35 years or so ago, when the Diabetes Research Institute foundation first began by a group of parents like many of the diabetes organizations that are out there, somebody there had a connection to the building and construction trade union. And that gentleman said, Why don't we try to raise more money for you. And during June on Father's Day weekend, they created debt, dollars against diabetes and they stood on street corners around the country with buckets and they collected change from anybody at the stop. The lights, etc, etc, etc. And they continue to do that. So they had enough money, and they raised like $14 million. And they took and they built the Diabetes Research Institute, which when it came time when the building was done, the foundation said, Let us name the building after you and all the terrific people of the building trades unions, and they sit down and they say, let's just put a plaque on the wall that said this building built by the hands and hearts of Americans construction unions, and that plaque is still there. It represents a beacon of hope nobody expected it to become the research center that so many organizations, the wonderful organizations out there, the JDRF the ADA is the National Institutes of Health. They fund us We are the scientists doing the work at that center,
Stacey Simms 7:52
and d-ri to be clear if people are not familiar. The work that Dr. II does is cure, cure focus research. Right,
Tom Karlya 8:00
secure focused all the stages of research, basic preclinical and clinical happen within one building. A lot of time in academia, you come up with a finding, then you have to go someplace else to find somebody to collaborate with, we go from one floor to the other floor to the other floor. And our saying is, if we can't move it up, we move it out. Because funds are so limited, we have to make sure that we stay focused on that supply, sustainability insight, which is the three main pillars that we look for, to cure this disease once and for all. And there's also a d-ri Federation, we share all of our information, we hold on to none of it, and we have federations around the world for that matter that we share information with because in Italy and in China, they can do the research a lot cheaper than we can do here. So a lot of times we'll test things out there, then bring it here and follow through the steps of the FDA that are set, etc. to try to get it from the bench to the bedside.
Stacey Simms 9:00
It's so interesting when you kind of dial down and look at how these things work. And I know that as some people are listening, they may be thinking, well, if it's so cure focused, and it's been around that it's funded, you know, how can we don't have more progress? How can we don't have a cure?
Unknown Speaker 9:14
I hate to put it in such simple terms. But
Unknown Speaker 9:16
can you talk a little bit about some of the progress that has been made?
Tom Karlya 9:21
Yeah, that's, you know, I said this before, that's your mouth to God's ears. That's been our hope since the beginning. And it is such a complex disease, and all the wonderful organizations out there as well as the research centers out there. This is just not an easy disease to figure out. I mean, years and years ago, when we first it would there was nobody funding research years ago for type one diabetes, and then to go out there and say, well, we're going to try to cure it. Well, as we went along, and as many other organizations that have, in their wonderful ways have funded our work and work around the world for that matter, have found out just how calm Flex this disease is years and years ago, we were actually told we were one of the first centers. And actually Dr. Kamila, recording our scientific director. He invented the machinery with a board member, Ramon Poe, who donated all of this time, they created the machinery to separate the islet cells from the pancreas when they get donated, and we give that to anybody around the world just to help them try to move it forward. But nobody knew that taking islet cells. So this is interesting, because I've been at this for 26 some odd years since my daughter was diagnosed at age two. And there was a time when people thought you will not be able to take islet cells, insulin producing islet cells and down years later became trying to re engineer stem cells and things to create insulin. There was no proof out there, that you could take islet cells and put them in another body and they would work well. They Did and I have and what's happened since that time is that as we move science forward, you know, I think we should do everything we can to try to figure out how do we make islet cells produce insulin in another person's body without being attacked? And why so many of these are immunosuppression drugs. You know, when we first started, people would say, Oh, yeah, but there are immunosuppression drugs. What people need to understand is that when it came time for the scientific studies, the quality of life of people who entered these research projects, they became patients for the clinical trials, they had no quality of life, because they could not feel going hypoglycemic. They could not feel their blood sugar going low. They couldn't drive, they couldn't hold jobs. They be talking to people they just kill over. So for a lot of these people, this first islet cell transplant became lifesavers because their quality of life was just not existed. something interesting happened when we did that. And around the world, this was done to a lot of different centers and not just at the d-ri, but we were at the forefront of it. And the interesting thing about it, even patients that went back on insulin, for the most part, not in every case, but in the majority of the cases, probably even excess of 80%. But that's just my layman's guess. They're hypoglycemic reactions went away. Even if the islet cell transplant did work, and they had to go back on insulin again, they did not suffer from the hypoglycemic episodes that they had. It has always been this great moving science forward. But the truth of the matter is, is that we will continue to work and I and I was active, I was doing other things when Caitlyn was first diagnosed. And for those who don't know the story, I was an actor for years. I was in a show in New York for for 1314 years talk about that. And we'll get to that and I've done a lot of great things, but I was on my way to a matinee performance when my beeper went off you tell people about beepers like What's that? And it just was said 911. And I went over to the phone, I can tell you right where it was, I remember to this day, I went to hold off of the of the bridge and the Lancey street in New York City. I went to a phone booth, for those who don't remember phone booths or things that had a phone in it. Right. So I called home and my wife said, Tom, I have to rush Caitlyn to the hospital. They think it's type one diabetes, and she had been sick and she had the flu. And, you know, again, it was everybody thought it was something else. And when I got to the hospital, which took me two hours, that was a whole episode in itself. I saw I looked down the hallway and I remember my wife Jill had Kaitlin's jacket was hanging from her hands. And we just looked at each other and I went in and Kaitlin had all these wires and everything attached to her. And I pushed the hair out of her face and I said, Hi honey, and she said Daddy, and she looked at everything she was attached to and she looked me square in the eye and She said,
and it stuck with me. I remember it every day when I start my day. That was a promise I gave my daughter. And I became, you know, whatever. I became an advocate and constantly working at it. And then I got really, really angry because I thought my reward was 2009, my 13 year old son was also diagnosed. So I was pretty angry. And that was also four days after my dad died. So when someone tells me they had a flat tire at a supermarket that week suck, they said, Oh, no, no, I can beat that.
Well, so an X and here we are, you just
Stacey Simms 14:35
have your two year old daughter looked you in the eye and say daddy fix to something that there is no fix. I don't want to make you relive that moment. But when your son was diagnosed, and that was Rob is diagnosed 17 years later, the change in the diagnosis. I know it's not a fix. There's no fix yet, but what was your perspective at that time because the diagnosis had to be different and the care had to be different.
Right back to Tom answering that question in just a moment. But first diabetes Connections is brought to you by Real Good Foods and there is something new from Real Good Foods. They have ice cream. Oh my gosh, real good ice cream. My whole family tried it. We have our favorites. I'll share a little bit more specifically down the road. But oh my gosh, the vanilla is delicious. That's the first one we tried right because you can't hide anything with just a vanilla. So we went right to that. I mean they have other great flavors. They have mint chocolate chip, they have chocolate, they have peanut butter chocolate chip, and we started with the vanilla and it was really good. It tastes like real ice cream because that is what it is. You can find out more at the website and preorder. It's available in select stores. As always, there's the store locator on their website, find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now, back to Tom Carl. Yeah. And he is answering my question about how different it was when his son was diagnosed with Type 117 years after his daughter.
Tom Karlya 16:13
Wow, you're absolutely right. And again, the tools, I always use that phrase, the tools that our diabetes toolbox for our kids has become so amazed, we used to have to wait 90 seconds. After we put Kaitlyn at that time, we couldn't even do our fingers. We had to do her toes. So we get a blood drop on a glucometer. And then we would wait 90 seconds. See if I could help everybody understand one main point that get diagnosed today than when not only 2009. But 1992 when Kaitlin was diagnosed, that the tools we have now are so far advanced. We always say when we try to get our children to live normal lives, you literally can live as close to a normal life as you can accept and there's a huge death there is your child. Type One Diabetes. But for those who have it understand what I mean that with the technology we now have, there was no, Caitlyn was the second child on Long Island to go on an insulin pump. Wow, could you imagine people don't realize that these things were the size of backpacks when they started these. I mean, it's not, you know, like an astronauts backpack, they were huge, but they got smaller, they got better, they got quicker. And that's why research to me, that's why I will never give up hope. Somebody looked at somebody checking their blood sugar, and they said, We can do better with that. And we have, and it's the same thing with research as long as there's a research center. And for me, this is just and everybody else can find their own place where to give their time and energy, but the Diabetes Research Institute, the fact that they are focused now that's a very interesting greement to have with academia, that we are focused on curing type one diabetes, and when we do that many of the patients type two patients for an insulin We'll probably benefit from that as well. But our focus is to cure this disease. As long as there's a place like the d-ri that focused on curing this disease, then I will never give up hope.
Stacey Simms 18:11
My question on that you said something very interesting. You said it's a very interesting agreement to make with academia. Do you get pushback from people who want to do research, but it's not cure focused,
Tom Karlya 18:22
we get not pushback, but we get increased from any university has the right to do and the University of Miami and we have to be honest, as you know, it's such a wide range University. It's got so many different aspects to it. But when they come to us and they say, look, can we look at looking into the type two type of research? Well, we tell them to go to another part of the campus and look for it. And they do. There are places probably on us campus that will focus on complications, you know, transplants they have, you know, they have a lot of different aspects of us, because it is such a great medical campus on a lot of different ways and areas that they can go someplace But when it comes to the Diabetes Research Institute, we have an agreement with them that that's where that focus will say. And a part of that is, in essence, the Diabetes Research Institute foundation is the largest donor to the University of Miami for all the money that we give only to the institute because that's all we'll fund. It won't go anywhere else. And that's because the foundation years ago, the parents had the, the, the wherewithal to say down the line, we want to make sure that this institute stays razor focused on a cure. And that's why that agreement is so important to be in place and we love being part of the University of Miami. They've been very supportive of us. It's a great relationship. And it's been incredible because it also being part of the University of Miami. It gives it the credibility that the world needs to see that this institute is part of academia, but also has raised focus on curing a disease that is only for type one diabetes.
Stacey Simms 19:58
Tom, you're handled your blog. Dave has always been diabetes dad, and I want to talk to you about being a dad for a moment if I could, you know, you've spoken many, many times in your blog. And when you speak in person about your wife, Jill, and how she took care of the kids diabetes, you said it, you know, really the responsibility mostly fell on her that sort of thing. You've given her a lot of credit. But I'm curious as you look back and your kids are grown up, and they're married, and you know, you have a different perspective. Now, what's your advice to other diabetes dads, you know, I think more men want to do more. I don't know exactly how much you did. But can we talk about being a diabetes dad for a minute and what that means?
Tom Karlya 20:36
Sure. And then, and just to be clear, and this is very important part of this discussion, the responsibility did not fall on jail. And actually, when Caitlyn was first diagnosed, we sat down and talked, because I didn't want to make the decision for myself. I didn't say, Well, this is what we're going to do. So she and I sat down and I said, Look, one of us has to stay home. And it was Okay, I didn't say, Well, I'm going to work, and you're going to stay home, we discussed that. And to me, that's one of the biggest keys to parenting with diabetes is keeping that open line of communication and dialogue open. I look at now, I mean, I mean, there was a time, we almost lost everything. Because she couldn't work. I had to work. I was working three, four jobs, whatever it took to keep us moving forward. I knew two things. Income had to keep coming in. And we had to have insurance from that day forward. So everything I did was working toward that. But it came about that I would work the jobs, and she would stay home with the kids and she would work when she could if she could, and then it became we had to find times that I had to realize that this is a partnership and dealing with this disease. So I would say on the days that I could get out of here go someplace, go see a movie go out with friends, we had to try to find time for ourselves as a couple. This is a very strenuous disease and a lot of different areas. And I tell couples and parents all the time, communicate, make sure you're talking with each other, not at each other. You know, I have to tell you one of my favorite stories. I was at the children with diabetes conference in Orlando, Florida. And I usually run the dad's group when I'm there. And there was a man talking and he said, I'm divorced, and this that the other thing, and he said, and I'm here, and the man next to him said, I'm in a second family. I married my wife, and they have a child with diabetes. And it was the father of the child and the new husband of the wife at the same meeting, finding it that important to learn about diabetes. And that was one of the most touching things I ever saw. I said, I wrote to the gentleman who was newly married, I said, You're like my new hero.
Unknown Speaker 22:55
Wait, wait, wait, I'm confused. So the family gets divorced. The EX is there and The new husband.
Tom Karlya 23:01
That's exactly right. Wow. And, And to me, that's as powerful a statement as that could ever be made that the child has to come first. And look, divorces Can I hope never to cut through it and I hope never to have to deal with it. But sometimes it can be very bitter. But you have to remember where your child is with diabetes is the same thing when both parents go to work. And the grandparents want to be involved. I say this all the time, grandparents are the most forgotten people when it comes to the family structure and dealing with diabetes because they want to help. But a lot of times it's like mommy telling the son or daughter what to do. And that kind of, they don't get accepted in as they should. But the grandparents hurt as much as the parents do, if that could be possible, because they want to help and we have to let them and find the mechanisms for them to do so. So the answer to your question is, communication is the most important thing and for the for dads to realize To look for places where you can pick up the ball and run with it, where you can be part of your child's life, don't let your wife do it. Make yourself part of the solution. And you will be. And that's exactly what we did. And because of what I ended up doing for my life, I ended up being the go to person for what was new in technology and what was coming down the line, and you was dealing the day to day management. But that's the balance. You will get to the late Richard Rubin, who is just an incredible, incredible man in the world of psyche of diabetes. He's the one who coined the phrase, diabetes, self willfulness. And it happens to all of us. And it's all about balance. It's all about choices. Such great advice there.
Stacey Simms 24:41
All right, Tom, I got to ask you, you mentioned this earlier that you were acting and you you were on these TV shows, but you were in Tony and Tina's wedding. For people who might not be from the New York area. You're from Long Island. I'm from Westchester County, which is really close by. This was not only a show This was like a party. Can you try to describe Tony and Tina's wedding?
Tom Karlya 25:04
Yeah, it's what's called Point to Point improvisation. The same things would happen every night. But basically, you went to a church in New York City, and then the service would end and you would walk three blocks to the catering Hall. And that was in snow, rain, whatever it was, and it was anything that could go wrong in the wedding would go wrong. An old boyfriend shows up. The father is divorced and is going out with this very interesting woman who, but he used to go out with Tina's mother. It took the whole thing just becomes a mess. But it at the time when it first opened. It was probably the first show that was all about improvisation. Now there's many of them, but they had they been in every city just about in the country and what some of them with long runs like Chicago ran for a really long time, as well. But it was a role that was very interesting for me. I played tennis. Over the years, I ended up doing four different roles. I ended up playing Tony's Father, I was a teenager. Father in the host of the catering Hall and he was like this kind of emcee which saying, tell jokes, whatever. But it was all about the engagement of the audience. So we, the audience, were the guests of Tony and Tina, every night, and we would have to interact with them. And the key to that was to listen, because you could pick up something and then come back to that person later and bring it up. And they're like, how did they know that? And it made it all like they were part of the family. And I mean, there was a time when all these celebrities came and it was it was one of the one time it was probably one of the hottest tickets in New York. You couldn't get tickets yet to wait two months. Kim can't imagine it was the Hamilton of the day but it certainly was a great show and the audience had a wonderful, wonderful time.
Unknown Speaker 26:45
Did you have fun doing that? I mean, I imagine it was it was very hard work, but it had to also be very kind of exhilarating in a way.
Tom Karlya 26:52
Well, it was an active job and it's probably one of the most Yes, exhilarating and and challenging to stay in character mind. came to see the show. And I didn't talk to anything else, but my character. And so it was always fun to make sure that at any given time that we had to stay in character no matter what power failure happened once and we all had to get out of the theater. Well, we all I mean, we met this is like leaving a catering all these people all sitting around tables all around you. And we all had to stay in character when we did that. So it was a challenge. It was fun. But yes, it was a job that you had to be able to stay in every night. You had to pace yourself. I mean, there was a time we were doing eight shows a week. And that's a lot of shows. So it's like any training that you do in the acting world. you train yourself to do the role, because you tell yourself every night that people seeing the show are seeing it for the first time.
Unknown Speaker 27:44
So before we let you go here, give us an update on the kids. The grown up kids now How's everybody doing?
Tom Karlya 27:51
My oldest doesn't have it. TJ he's with the New York state mental health police department. Kaitlin now interesting thing about Caitlyn as I remember you Years and years ago, someone told me you really should just hope for college for your kid. And I said, What are you talking about? You mean she's not gonna make college? He said, I'm not saying that he said, it's just you have to understand how devastating this diseases but make college a goal. Well, that person didn't stay a friend clearly. So,
Stacey Simms 28:17
but but that was a belief at the time people I've heard Well, it was thought that
Tom Karlya 28:21
Yep, yep, yep. And I think that's one of the keys for all of us is to keep our kids so positive that they can do anything with this disease. So not only did she graduate college, not only did she graduate nursing school, but in December, she graduated with her nurse family practitioner ship, and she's now a family nurse practitioner, and she's in practice and she'll be hopefully her goal is to deal with people with type one diabetes. My youngest son is a computer guru, and he was working for a company called Best Buy. And he got tagged by their Geek Squad when he was 18. And I said, Do you like it? He said, Yeah, dad, but that's not where I'm going to stay. And I said, What do you mean? He said, My goal is to be tapped from the Magic Castle. I What's the Magic Castle? He said, it's the corporate headquarters in Minnesota. I said, Well, that's a lofty goal. He said, Well, that's my goal. Well, earlier this year, my wife and I went, saw my son's new office, at the executive row in Best Buy in that building, that they are all in and looked at his new office, because they did just that when he was 21. They tapped him on the shoulder and they bought him out there. And he now works for the corporate headquarters for Best Buy Geek Squad. Now I share that not just because of who they are. But if you have a dream, if your child has a dream, our job as parents is to do everything we can to help them fulfill their dream. That was my son's dream. She's been there now for two years in Minnesota, doing just what he always wanted to do.
Stacey Simms 29:46
That's just wonderful. I mean, I'm getting kind of emotional. Actually, as you're talking about it. I think it's incredible, because you have to let them pursue what they want to let them dream. And when Type One Diabetes comes along. It's kind of easy to think to yourself, Well, maybe We should damp down the expectations. And you didn't do that for any of your kids. And your mantra has always been at least since I've known you is just don't do nothing. So for people who are listening, you don't have to, you know, be a senior vice president of the Diabetes Research Institute. You don't have to you speak all over the country like you do. But as we leave here, is that really your advice? Just do try to do something.
Tom Karlya 30:26
It started with a step. If you told me back then that I'd end up where I was today. I would have told you you're crazy. Start with a step. If you're looking for something to do hang posters around your community about the warning signs for diabetes. There's a mom in texas a mom in Texas, she and I connected years ago and created get diabetes, right. org and all that is is posters that you can download and put around your community for people to know about the warning signs of type one diabetes, and we're not alone. Beyond type one does it all bunch of other people JDRF does it all People have these warning signs. It starts with you looking in the mirror saying the status quo of diabetes in my life just will not do. What can I just start asking the question, What can I do JDRF started by parents. The Diabetes Research Institute foundation started by parents, people out there doing things, podcasts out there, Stacey Simms says, gotta do something. This is my background. This is what I can do. This is what I'm going to do. It's something there's nothing so small, that cannot change a life a life around, just by starting with the first step. This disease will not do in this world, my world, or any world, and look for something you can do to change it. Tom,
Unknown Speaker 31:48
thank you so much for joining me. It's been such
Stacey Simms 31:50
a thrill to hear your story and to talk to you today. I really appreciate
Tom Karlya 31:54
it now. Thank you and thank you for everything you continue to do. And these are the stories that people need to hear because there's a A lot of people out there who don't know that what they can do and how they can do it and, and that's what people need to just keep hearing these stories so they get, you know, there's so many people out there that is so inspired now, and professional sports and dance and drama and theater in studies in school, excelling, diabetes just won't do and just don't do nothing when it comes into your life.
Unknown Speaker 32:26
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 32:32
You can find out more about Tom at diabetes. Connections calm is the episode homepage. Of course, I will link up information to his blog to the d-ri to everything else we talked about and there is a transcription just like there is for every episode this year. And I am working to fill in the blanks on transcriptions in the past as well, because I'm getting such a great response. I wasn't sure right? Do people want transcriptions? Is it worth the time? Let me tell you, it is totally worth it. I've been hearing So many people who maybe just don't have time to listen or prefer to read. And it's a service, I am more than happy to provide as frankly, the technology is getting better. It's still not perfect. I mean, you know, most of these transcription services do not speak diabetes. So I've had to go through and fix a few things. But I'm happy to do it. Because I think it really is enhancing everybody's experience. So thank you very much for the feedback on that. Up next, tell me something good. But first diabetes Connections is brought to you by Dexcom. You know, when you have a toddler diagnosed with type one, like I did, like Tom did, you do hear rumblings for a very long time about the teen years, but when it hit us at full force a little early, frankly, I'm so glad we had Dexcom it just helped us see and really take stock of the changes we made because Benny's insulin needs started going way up around age 11. And he's 15 now and it's almost settling down. I don't wanna get too personal, but you know, along with the hormone swings, I can't imagine managing diabetes during that time. Because we made so many changes without the Dexcom continuous glucose monitoring system, we react more quickly to highs and lows, see those trends and adjust insulin doses with advice from our endocrinologist and I know using the Dexcom g six has helped improve Benny's a one C and overall health. If your glucose alerts and readings for the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to diabetes connections comm and click on the Dexcom logo.
Our Tell me something good stories this week come from a Facebook group called poked parents of kids experiencing diabetes. I'm part of that group and I posted that I was looking for good news stories and oh my goodness, did they deliver so let me bring you a couple. Sarah wrote my daughter just signed to play college soccer. She is so excited to keep breaking down misconceptions about type one and sports Susan says my daughter with Type One Diabetes earned a scholarship and direct admission into a competitive nursing program. She's in her freshman year living on campus and successfully handling it all. Her goal is to be a diabetes educator. And then Beth wrote in this kiddo, Frankie, who has lived more of her life post type one is rocking control IQ the new software from tandem best says slightly off label since she's barely six and definitely under 55 pounds and just got invited to present on a panel at JDRF type one nation in Denver. That was a couple of weeks ago before everything was canceled. But I asked Beth to ask Frankie Yes. And she was on a panel. I had some questions for her. And Beth was happy to oblige. And Frankie answered my questions. So my first question was, what is one thing she would tell a kid her age was just diagnosed with type one, and Frankie said, I would tell them it's okay. Don't be afraid and you can still do everything you want. And then I said What's something she does to feel better when she has a hard day, and Frankie responded, I tell my mom and dad when I've had a bad day, then we usually do something special together to make me feel better. Again, Frankie is six years old, and she was diagnosed at two. But thank you so much for sending that. And thanks to all the parents for responding to my prompt in the group, I really appreciate it. If you have a Tell me something good story you just want to share about your kid or yourself. It can be everything that you heard, it could be a diversity, just you know, with everything that's going on. Let's have some good news in our community. I love it. It's my favorite part of the show each week. I really would love to hear from you. Before I let you go, just a quick note on everything that's going on. I mentioned at the beginning of the show that I was going to talk a little bit about local groups. And all I really want to say about that is if you have a local Facebook group, as many of us do, you know, just check in on each If you have a local text chain or WhatsApp or things like that, maybe your kids have a diabetes camp, I don't even know what kids are using. I was gonna say whatsapp group, but you know, you know what the kids are on tik tok or whatever. Check in with their camp community or other people you may know through your local JDRF chapter. If you're an adult with an adult group, please check in on each other. If you have nobody. If you're concerned, you're by yourself, you're worried we're here, right? I don't know what we can do other than say, we can help. I don't want to make empty promises. But I do think it's really important that we get social connection during this scary time, which really can lead to in real life help. I know that in my community, when somebody needs insulin, we get it to them. When somebody needs a Dexcom sensor. We get it to them if we can. The diabetes community for a very long time has already taken care of the people within it. And I hope that that spirit extends to the whole community during the scare both At the very least, if there are people in your diabetes community that you can help, let's find a way to do so, you know, if you're halfway across the country, there are so many ways to connect, that it's really not that hard to find somebody nearby. So hey, diabetes connections, listeners, that's my challenge for you over these next couple of weeks. I know most of you are already doing it. But if you've listened this far, if you're hearing my voice at this point, check in on your diabetes friends, check in on your community, and let's see what we can do to help each other. We may never need the help, but it is nice to know it's there. I think that goes an awfully long way. All right. Again, I don't know what I'm doing in terms of scheduling for the next couple of weeks. I'm not going to do lots and lots of coronavirus episodes. I don't know that they're needed. I think I will check in if I can with some endocrinologists over the next couple of weeks. Maybe we'll do some Facebook Live. You tell me what you want to hear. But in the meantime, right now I am planning to go back to the regularly scheduled diabetes connections episodes. I have a Few that I've recorded already a few interviews, and I think we'll just put those out as planned. And we will go from there. Thanks as always to by editor john Deakins from audio editing solutions. Thank you so much for listening and for letting me into your lives right now. I really appreciate it. I'm Stacey Simms, and I'll see you back here soon. Until then, be kind to yourself.
Unknown Speaker 39:28
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
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:
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom
this is Diabetes Connections with Stacey Simms.
Stacey Simms 0:26
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
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 the vast majority of listeners wanted regular podcast programming with COVID 19 updates as needed.
Now, I do come from a news background as you probably remember. So I admit, it's just a little hard for me to pull myself back from breaking news mode. I mean, I'm thinking you know, wall to wall coverage. This is how we would do it. This is how you're seeing media do it, but I hear you, and I'm here for you and to do what you as listeners want to hear.
Because I'm getting this episode out early, the next one may not air Tuesday, our episodes usually drop on Tuesdays. If you subscribe to the show, that is probably your best bet. It'll just come to whatever app you use. And if you follow on social media, of course, I will post there, too. So please check back in. And let me know what you're thinking and what you want to hear. And by the way, maybe I should have said this upfront. If I sound a little bit different, it's because I have moved my office. And frankly, I wasn't really ready to record yet, but we moved this up so I don't have everything in its perfect place. Hopefully it sounds just fine. But if it's a little different, that is why All right, thank you so much, john, you can as my editor for rolling with these changes and being able to get these episodes out. I very much appreciated. Thank you for listening. And please check back into the Facebook group, social media or wherever you listen for the next episode. I'll see you back here then.
Unknown Speaker 21:52
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
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.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is diabetes connections with Stacey Simms.
Stacey Simms 0:27
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 management system that depending on what you want, is how you would interact with that system. So some would have a preference of saying, you know, when I'm doing okay, or my regimen maybe easier, I don't need as much variation. So, for me, it's a place that I can capture that data and not have to go to different places to get that data for others having some different elements of support in that system. will be beneficial, right? If you think about things on the Faisal influence side for people with type two diabetes faisel, type tration as you get started on the insulin, or maybe after I'm on insulin for a couple years, how do I make sure I'm optimizing? Right? You can go through sort of that journey and see all of these different places where how we can do better than we're doing today. And I'm honing in on the glucose data and the informed data. So we all know I sometimes say life gets in the way right exercise and food you know, all those things that are pretty standard, but for a lot of us can make the road pretty bumpy as we're out there. So you know, over time being able to get the system smarter and smarter with that exercise data and then learning system. So, you know, we all talk about the algorithms that are out today are very much rule based systems right if my glucose is going up by default Like take this action and then be informed is delivered in the future. It may be well for Marie, her level is going up at x rate. And that's, that's not good for Marie versus for Stacey, that might be okay. Because I've trended back and looked at that data and say, you know, we're going to predict that she won't get to an elevated level as an example. Right. So if you start thinking about the personalization of these algorithms over time, it will not be day one, as we all know, it's going to take a lot more research and beta for us to be able to continue to get to that ideal state.
Stacey Simms 20:41
So I'm trying to read between the lines. So the plan sounds like it is to launch with a more let's call it a more static algorithm. Like we just started using control IQ from tandem which is a hybrid closed loop software system. It is a great system for us so far, but it doesn't learn anything. It's probably If This Then That, but it doesn't learn my size. Okay, it's not personalized. So I assuming you're kind of saying that Lilly will launch in a similar way, but the idea would be to eventually get to a learning algorithm.
Marie Schiller 21:11
Yes, I think that's a fair statement.
Stacey Simms 21:14
All right. So let's talk about the announcement that you're gonna be working with Dexcom. Just if you could spend a minute talking about what that means. It's not exclusive as I read the release that y'all sent over. So it sounds pretty interesting. Let's start with what it means first to work with Dexcom are they making? Sometimes there's, I hear special transmitters for certain things, certain software for certain things. Is this a Lilly Dexcom? Original?
Marie Schiller 21:39
no meaning we are basing it off of the transmitter that Dexcom has. So we will be compatible with the G six and we'll continue to work with Dexcom in our development arrangement as they continue to iterate and we continue to iterate to make sure we've got access to each other's latest technologies right because the last thing any of us want to do in these collaborations is to be behind in generation integration, right? I mean, that's what was happening and some of the first generation systems, right, you got people still on, I think it was what g4, and they'd want to be moving to the G six, and there was no way to do those updates, or the G five. So we've established our development, work with them and ability to make sure that we can continue to be running in parallel, as each of our platforms evolve over time. So it will be based on their latest transmitter based on our latest pump in our latest pen, and be able to integrate the the CGM data from Dexcom system into the diabetes management system, where some of the functionality that I talked about before could be available.
Stacey Simms 22:53
So I'm always trying to read between the lines You'll have to forgive me but when I see a press release that says non exclusive, I'm always thinking, you know I don't know of too many, or any pump systems. Gosh, it's so funny to say that Marie, because there's really only a couple in the US. But I don't know if I hear we hear a lot about interoperability, but it isn't here. Yeah. So my question, I guess, is when I see now exclusive, I'm thinking, Okay, are you do you have an eye to working with other CGM companies? And is that practical in the short term? When we all know FDA approvals, things like that, you really kind of have to stick with one system, at least so far, to get it through?
Marie Schiller 23:29
Yeah, you know, it's an interesting way you sort of posed the question, I think, let me say big picture and then sort of dive down to where we are right now. You know, at the end of the day, we believe having access to sort of the latest and greatest technologies is really important, right. I mentioned even with dex comm that we want to be on the same innovation curve that they're on. So people using our system can have access to that. It's really important that all of us, keep pushing For this innovation, right, and the way that you do that is to make sure that I have the ability to integrate other technologies into my system. And I think both of us hold that premise that keeping as a non exclusive allows both of our team to be able to, you know, have access, or have our users of our system have access, I should say to the latest and greatest technology. We have started our program with the XCOM and are really excited about the progress. But we think it's important to make sure that we will have the opportunity to bring different technologies in for different users, even on the systems available today. Right. There are differences in the system, and people are choosing different platforms because of that. Sure.
Stacey Simms 24:51
Yeah, it's really interesting. I mean, I keep hearing about interoperability, which I know is going to come someday but my interpretation of that which is I always call it the Mr. Potato Head. system is not the realistic system. So I try to temper my expectations but why not? Come on? I want to mix and match as much as possible. Why not?
Marie Schiller 25:10
I don't know. Did you like playing Mr. Potato? I was never a huge fan.
Stacey Simms 25:16
It's a it's an easier thing to explain, right? Why can't I use the lead Ray? With the tandem pump? Why can't I use a Dexcom with a barefoot pen? Why can't right i mean if it works better for me and my skin and my kid and my like, why can't I and I, I get it. But at the same time, I really hope that someday we're working towards that, hey, look, it could be worse for you. They could make us play operation or perfection or something terrible like that.
Marie Schiller 25:39
Those are worse. Yeah. But you know it, baby. I think there are a lot of people were having that sort of turnkey solution is, you know, where it's all comes in on and I just understand it and it's all designed to work together. They prefer that and other people would would like that choice, right. So I think we're gonna probably see both of those emerge over time. And the FDA to be fair, has opened the door to that event, right? I mean, they're trying hard to separate the approval of each of the components. We saw that with the ACE ban. We've seen that with IC GM, and now with AI controller that can pass. So, you know, I think, at least from the FDA perspective, they've worked hard to try to enable some of that.
Stacey Simms 26:25
I agree. Alright, so from interpretability. Let's talk about the proprietary aspect of this. Because I think when a company like Lilly, that makes insulin gets involved with the hardware in which the insulin goes, a lot of questions come up, and you mentioned the quick pen. So can you just confirm again and correct me if I'm wrong? Will other insolence be able to be used in either of these systems pen or pump?
Marie Schiller 26:52
Yes. So on the pen side, the system is being built around our quick pen platform. So it will be a system that work with really insulin on the pump side of the equation. In addition, we'll have a first generation that will be a patient built component, but over time, that may shift as well. So on the life cycle plan for that pump, we're looking at the ability to have Lilly insulin in that system, as well.
Stacey Simms 27:27
Okay, so to be clear, and not say, not putting a judgement on this, but just to be clear with the idea is that this would be a proprietary pump, that Lilly would make the pump and Lilly would want its own insulin. We've been human lock used in the pump.
Marie Schiller 27:38
Yeah, I think the system is being designed around Lilly's insulin.
Stacey Simms 27:43
Alright. So you know, we've Marie, we've known each other for a while now and I know you know, this question is coming, but I think it has to be asked in a day and age where people are so angry about the pricing of insulin. Why should we get excited about systems like this when people are worried about But affording the stuff that goes in the hardware, let alone affording the hardware, whatever it is, and how great it is. There's a lot of concerns about cost. I know it's not your department, but I can't have you on and not ask about it. Can you comment on that?
Marie Schiller 28:14
And no and not and I appreciate you asking it. And you have no need for a while as well. So I appreciate the service candid question. Look, you know, and I've said this before, and I'll say it again, you know, we are committed to be able to let people with diabetes, access our medicines, and in the future, disconnected diabetes system that will include sort of the pen based system and the pump and other components. I know you'll be frustrated at this next part of it. But I can't fit here in sort of the position I'm in and where we all want this platform to be any, you know, give you any speculation of the details of how that will happen, or how that reimbursement will be in the marketplace. It just wouldn't be fair to you or your user's to speculate on that, except to say that we are 100% committed to making sure that that access is available. 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 access the system.
Stacey Simms 29:24
And I mentioned in the introduction, but you live with Type One Diabetes, I definitely have another question for you. But it just occurred to me, are you allowed to even say this, have you tried this system? Like, are you in the trial? Can you trial your own? unprepared?
Marie Schiller 29:38
I sure how to answer that. I have no, I'm not in the trial, but I can give you that answer. So I am not in the clinical trials that have occurred today.
Stacey Simms 29:50
I'll tell you as a person who doesn't have diabetes, obviously, you know, it's just something that I always wonder about when I talk to researchers or clinicians or I know there's there's obviously rules for clinical trials. But you've got to think, alright, I want to try this on myself. I know a lot of people have done that. Okay. So the real question I wanted to ask
Marie Schiller 30:05
is okay, I can't wait. I can't wait. That's why there's no, we're pushing hard to justice available. I, I'm waiting, like out there to make sure that I get this.
Stacey Simms 30:18
Alright, so I've got a difficult question. So my real question about living with type one is difficult is it right now to work at Lilly, when people are so angry, and a lot of that is directed? We've seen protests separately headquarters, you know, and again, it's not you, you're not in the price department. Even if there is one. This is not something I know you can control. But is it difficult and frustrating for you to see the problem, frankly, with insulin pricing at all of the insulin companies?
Marie Schiller 30:46
And the answer to that they see and I think we may have talked about this, either the last time on the phone or when I saw you it's like how do you not feel the pain in you know from people, right? I mean, this dishes, dish issues difficult issues people are dealing with. So of course, you know, what I would say is is that worse from, you know, being here? You know, I look at what we're trying to do. And And And again, I'm not the person to sort of comment on this, but it's a priority for Lilly. And I'm really proud that Lilly has made it a priority to make sure that access is there.
Stacey Simms 31:25
Going back to two devices that we've been talking about. I always hate to ask about timelines, but I always have to ask about timelines. Can you give us a goal timeline here? Is there any indication of when it might be submitted to the pen or the pumping, which will kind of go in first?
Marie Schiller 31:42
Yes. So let's talk about the pen first. So as I mentioned, and you can see on the FDA site the supplemental approval for the pen has gone through. We are working with the agency on the other components of the systems. We are not giving an update right now. on the timeline for that system, but we expect to be giving updates over the next couple of months on the pump. As I mentioned, we'll be sharing the first clinical data and our signaling that we're still over the next couple of years hoping to get that system to market
Stacey Simms 32:16
where we thank you so much for joining me. I know it's a difficult conversation to have when you've got, you know, a lot of things about to come out and then other things that I'm asking that aren't really your department. But I appreciate your frankness. Before I let you go as a person who lives with type one, what is it like to work in the diabetes sphere? I mean, I think part of me would be kind of tired, like my whole day is diabetes. My whole life has diabetes, but it's got to be exciting as well. What's
Marie Schiller 32:41
it like? It's an interesting question. For me. I just don't know any different facing effects? The answer is, I don't know my kids would probably answer the same way. I don't know what I would do with myself if I wasn't doing this all day. My weekends are spent so much in the diabetes space as well. It's just something that that is it's just a part of me, right? so much a part of all of us who are living in this space. And I'm impressed every day by all of the people working so hard to make these advancements. And it's amazing, right? As you've seen, we're actually getting some of these solutions out and reading about the improvements that are there. And I'm excited and want to keep staying focused on doing what I can to get these products out and having my team man. I mean, everybody here is just so passionate about what we're trying to do to make these advancements. So it's, um, I know it's a it's like one of those questions someone would ask what would you do if you worked with your spouse? You know? I don't wanna say I love my diabetes so much because I'm not sure I'd answer that way. Am I cursed my diabetes maybe as much as I do other things in life, but it's data reason that probably keeps That's all motivated if we know how much better we can make life.
Stacey Simms 34:03
Well, thank you so much for spending some time with me. I really appreciate and I hope we get a snapshot of the devices soon enough, Marie thanks again.
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 34:21
Of course, more information at diabetes connections.com. I always link up a lot more info at the episode homepage and a transcript. I'll be interested to see how this episode is received. As I mentioned at the start of the show, there are some people who do not want to hear anything from Lilly, if it's not about lowering the price of insulin. And I respect that I hear that I know that there's a lot of anger in our community and a lot of frustration at all the insulin makers and you know, I do share a lot of that, but I would be curious to think if we should not be following the other technology advances that are coming out of these companies, because I'll be honest with you, I said this two years ago, I think Lilly is seeing the writing on the wall. That the price of insulin is going to be mandated to come down in the next few years. And they are, they don't wanna lose money. They want to find other ways to continue to be competitive. And I certainly don't think that insulin will be free. But I do think that going into the pen and pump business is a move on their part with an eye on the price of insulin coming down. Look, I'm not an economist. I'm baby way off base. But that is something that makes sense to me.
up next Tell me something good. And then a little bit later on. I want to talk about some other pump companies and news that came out recently, diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it is their diabetes management software. And for a long time, I just thought it was something or endo used. You can use it though both on the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I check it about once a week. It really helps spinny and me dial back and see longer term trends and helps us not overreact to what happened for just one day or just whenever Our the overlay reports help with context of Benny's glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive for managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at diabetes connections dot com and click on the Dexcom logo.
I love the Tell me something good stories this week. Honestly, I love them every week, but I got a bunch that are so fun to share. And one that frankly is pretty important. Alright, so first, Candace says my son was just diagnosed January 23. This year with a hospital stay. By February 13. He was dancing away and winning a hula hoop contest at his first school dance since diagnosis. He's 11 and he was so proud of his accomplishment winning the contest. And we as parents were so happy that his diagnosis wasn't holding him back. That is so cool. I didn't Kansas for a picture shockingly, an 11 year old did not want pictures of him hula hooping to be displayed. I'm actually not sure if she had any, but we respect that we hear it. I just think it's fantastic that he did it and that he's doing so well. This soon after diagnosis way to go Candace!
Alison said this is a tiny thing. But today my child was type one went to get her foot x rayed her shirt, rode up and showed her Dexcom and the text said, Hey, do you have diabetes? I do too. Then she pulled out her pump. It was super cool. Allison says her child was diagnosed in early December. I think that's great. Is there anything better than that diabetes in the wild citing, right? You know, you're with people who get it. It's just so great.
And then this one you may have seen on social media. I posted a picture of Isabella with her fish, not her pet fish a fish she caught. Isabella is nine years old and she loves fishing with her dad and boy she beaming in this photo with a fish that's like as big as she is. Her mother, Heather says she was diagnosed with type one at age four. Again, she's nine. Heather says, I will tell you this little girl is amazing. Her dad got diagnosed with lupus almost four years ago. He is on dialysis. We are on a kidney transplant list. I'm currently trying to be his donor. And a lot goes into that. This is her and her daddy's favorite thing to do. They live life to the fullest, and nothing stops them. Heather, thank you so much for sharing this story for letting us share the picture of Isabella, you guys are carrying a heavy load right now. And I'm so glad to hear that you're finding enjoyment in things like this. It's kind of trite. As I'm hearing these words, leave my mouth. I mean, there's really not much to say when you're in a situation like that. But I'm happy to share your story. And I hope you keep us posted. Let us know what's going on. And definitely send more fish pictures. I would love to see that I really would even if we don't share them. You can definitely send them our way are posted the Facebook group.
Our final Tell me something good is a little bit of a different story. It's more of an news story. But this is really important. And I think very good news. Beyond type one announced that they are collaborating with the National Association of School nurses to raise awareness of the warning signs of type one diabetes. So this is a new collaboration that means that 10s of thousands of school nurses around the country are going to get these awareness materials from beyond type one, if you haven't seen these we did in North Carolina push a few years ago. And they're just simple and straightforward. And they tell you the signs, and they talk about what to look for. I don't think those of us in the community had any idea what DK a was what it looked like, how deadly it could be, you know, before we our children were diagnosed, right? How would you know? So this education campaign is absolutely going to save lives. Huge thanks to be on type one. And a big thanks to the Helmsley Charitable Trust which is funding it. I will keep you posted. I will put up links in the show notes on how you can get involved because you know ordinary people state to state are getting involved. We sit around my dining room table here outside of Charlotte, North Carolina and stuffing envelopes and sent them out really can make a difference. Tell me something good happens every week around here. Give me your stories post in the Facebook group, email me Stacey at diabetes dash connections dot com. I would really love to hear from you. We got to get the good news out in our community. Tell me something good.
All right. We're getting a little long here. But I wanted to bring you some news from the other pump companies. I know I don't usually do a news update this far down in the show, but because I put the coronavirus episode out a little early. There was some news I was going to put into that episode that has gotten pushed here. Let me get right to it. We had an earnings call from tandem. And the really interesting bits from that were that the T sport hybrid patch pump is now expected later this year, possibly probably early 2021. The CEO of tandem says they plan to file with the FDA for t sport approval. This summer with a new mobile app, which means you'll be able to bolus from your smartphone. So apparently, they're going to submit this in two different ways two different filings. One would be a separate handheld device, right like a dummy phone or a dummy controller of some kind that you'd bolus from. I'm dummy and that it doesn't do anything else but control the pump. But the other filing would be remote bulleting by the smartphone app. And apparently the CEO said they will not launch t sport until both have been okayed by the FDA. So you would have the option of using your phone or of using the singular let's call it singular controller rather than the dummy controller. So that's really exciting. I'm gonna post some pictures diabetes mine posted this update and posted some pictures of the tee sport. It is a little patch pump that can be worn on the body or it has a tube so it can be put in your pocket again. I don't know how it sticks to the body. Did you hear me talking to Maria about that? Is it reusable? Like ever since or is it like a dexcom to rip it off or a pumping set. So we'll find out more about these things as they go forward. But that was some really interesting news from tandem.
The other bit of news comes from Insulet. They are in the middle of clinical trials for horizon, they had hoped to be filing for that approval. This summer horizon is the hybrid closed loop for the Omni pod. They did have a software issue. That means they are pausing the pivotal study, and it's going to delay things, not really sure how long, of course, they're really hoping that it won't be too long, you know, maybe a month or so. But they are now pushing the anticipated launch of horizon to early 2021. And I know there's a lot of disappointment because people really want this system. I will say to you that tandem had a similar issue with their software during the last pivotal trial for control IQ. It was very quickly fixed. I don't think it affected the timeline that much. Maybe it was just a month, but it still hit its goal of the end of the year. So hopefully Omni pod insolate can get back on this and get back to their timeline but I will link to More information on that, because I know these things just cannot come to market soon enough.
tank you for staying with me. This was a long bit after the interview and I appreciate it, but I wanted to get some information out there. I really appreciate you listening. There's a lot going on right now. All right, I'm gonna stop right here and thank my editor John Bukenas from audio editing solutions. If you have an audio project, I highly recommend john, you know, if he puts up with me, and my rambling that he can do wonders for you. All kidding aside, john is great. I love working with him. He never asked me to say anything in the show. But he really is such a strong part of what makes this podcast successful. And boy, is he nice to me and doesn't leave in all of my papers. So thank you, john. And thank you so much for listening. I'm Stacey Simms. I will see you back here next week.
Diabetes Connections is a production of Stacey Simms media. All right. reserved all wrongs avenged
Transcribed by https://otter.ai
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. (text from the CWD website)
Stacey was excited to be selected to be part of this storyteller series, and even happier to be interviewed by Kerri. You can watch the video here, read the transcript below or, of course, listen to the audio on this episode.
Get the App and listen to Diabetes Connections wherever you go!
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
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 Sparling 15:46
Yeah, no, of course because that's your actual personal life but broadcasting it to the broader internet as a different person retired. As a kid who grew up with Type One Diabetes, that's my perspective. And yours is parenting a kid who's growing up with Type One Diabetes. How How do you feel about I mean, you see a lot of memes from parents about parenting in general where they have like the curlers, half in their hair, and the bathrobe and the coffee cup dangling off of one arm, and they're like, parenting is so exhausting. And that feels universally haha. But when I see that same sort of meme applied to diabetes, like, this is what a parent of a kid with diabetes looks like. And they just look bedraggled and rotten and exhausted and as an adult with type one that applies a guilt to my experience that I didn't see coming. And so I'm just curious what you think about things that paint diabetes in a light that maybe they don't realize is shining directly on their kid. When parents tell those sorts of stories? Yeah, it is a great question because the reality is, maybe you didn't sleep that great last night, right? Maybe you were up three times treating a low. But are you talking about me because that was my nightlight?
Stacey Simms 16:49
Well, I do have Do you have a baby can still because there was a signal in my house. No, I
Unknown Speaker 16:52
Stacey Simms 16:55
It No, I'm talking about the parent, right. So if a parent has to do that, and then wants to go on from But the next day and start talking about how hard it was. I can understand that. But I do think and my favorite meme about this and I don't think it started as a diabetes parenting meme. I think it's just a parenting meme. But it's like, you know, an 87 year old woman, and that it says like, well, parenting is hard. You know, my I'm celebrating my 23rd birthday tomorrow. Money. But I do think that you've hit it on the head, that's going to be my would share about diabetes. I think it's difficult to know where to draw that line. And we don't, we don't think because what we're doing not to get all psychological. But in doing some research for a recent podcast I was doing I found a great article about this and I can send you the link but when we're sharing things like that we're looking for likes, right because our brain As humans, we need support. We're looking for community. We actually like to get the good Brain Stuff going the dopamine or whatever, when you get the right weights real and physical and social hosting, something like that, you know, is going to bring in more of that. And it's not made up. It's not fake. Oh, yeah.
Kerri Sparling 18:09
Feeling it all
Stacey Simms 18:10
really happens. But there are better ways of doing it. I think and as you were alluding to, if we, as parents of kids with type one, don't listen to adults with type one, we miss out on this kind of conversation, because no seven or eight year old is going to say, you know, it kind of hurt my feelings or I, I really processed some guilt when you posted that, right? They're not gonna say that they may not even realize it, but we need to be mindful of that kind of stuff. And I think it's fine to have fun and you know, maybe share that privately. But um, you know, I I'm really try hard not to make diabetes, the focus of everything and not show that guilt because that's just parenting anyway.
Unknown Speaker 18:48
Right? It's just an added thing.
Stacey Simms 18:50
It is just an added thing. It's like not to get too far off topic, but when people are freaking out about sending their kids to sleep overs, sure, right, because something might happen when I was in second grade Jennifer Look, it's like At my house, we had a babysitter. We didn't eat that my parents and she put her leg on my bed. It was the 70s. It was like some metal crazy trundle bed. She cut her leg bad enough that we had to go to the ER and get stitches.
Unknown Speaker 19:10
Oh, wow. How do you prepare for that? I don't think you do.
Stacey Simms 19:15
Things happen on sleep overs. emergencies happen. Parents who say I'm gonna have sleep over have to be prepared for weirdness. And to me diabetes falls under that category. But that's a decision you have to make. And I think it's the same thing with that kind of a mean, you kind of have to make the decision of, there's a difference between, everything's fine, everything's fine. Everything's fine, which I've been guilty of for a long time. It's fine. It's fine. I'm not gonna worry about it. I'm good. I'm good. I'm good. I'm good. I don't need any help. I'm fine. And there's a difference between that and what was me everything's terrible. Like, like sucks and you know, oh, my God, diabetes is the worst. You gotta you gotta find that medium and you've got to, at least to your children, I think it's important to fake it, but be careful about stuff like I might.
Kerri Sparling 19:57
I like what you said earlier because I read a lot about my fulness and being mindful and making sure that you're mindful, but the fact that you've cited mindlessness as a potential alternative to that, like, don't be mindless, don't share mindlessly consider the you know, the course of your actions that you're taking and how it might influence your kid. That is a huge takeaway already. For me from this conversation. It doesn't apply just to parenting diabetes, I think it applies to the whole mess being Don't be mindless about the things that you're sharing. I think that's a really, really good tip.
Stacey Simms 20:26
It's funny because I stink at being mind. Right? You're like, Oh, no, take your time when you eat and drink your tea and fever and, you know, take them home. I really don't think I can do that. But I can take an extra 10 seconds and think do I want to post this photo?
Kerri Sparling 20:39
Of course, not. In a mindfulness exercise once I was asked to spend one minute eating one m&m, and it was really strange experience and I'm sure it was really effective, but for me, it made me feel very stressed out. We can get into that later, but because we've talked a lot about parenting, and I'm sorry to be going back to my notes here. You You talked about it experience where you and your family are you at least and Benny and Leah met Nick Jonas, and how this was truly more of a thing for Leah, your daughter than it was for your son who is the one who has diabetes. And there's something that you wrote that really stuck with me because I feel like parenting a kid with diabetes, that parent is acknowledged a lot, which is fantastic. The child with diabetes is acknowledged quite a bit because they become the focal point of that narrative. But the siblings of kids with diabetes end up on this weird purgatory peripheral area, and they're not often acknowledged. And you wrote that at the end of meeting with Nick Jonas, that you had said the diabetes was in our lives. But she Leah knew we wouldn't let it take over she knew she wasn't going to be left behind and reading that now gives me goosebumps for reading it then also did too because it acknowledges a group of people that need just as much support as I do as a kid, as you do as a parent. And when I think about children with diabetes in the organization, the programming really speaks to that as well. It's not just for parents, it's not just for adults with type one is for the siblings. It really embraces the whole family. So because your wrote that awesome line. Could you say a little bit more about supporting a sibling
Stacey Simms 22:04
and, and the children's diabetes? I mean that friends for life Leah has come. And Mr. Summer schedules are always crazy. So it's rare that either one of my kids can come and like I still go, but I had a I had a blast, and she didn't really think she would. She kind of came as a favor to me.
Kerri Sparling 22:21
But she was when she was I
Stacey Simms 22:23
think she was 14 or 13. She was a teen. So she was in the teen programming. And you know, Benny was still too young to be in that programming. So they were separate. Yep. And she knew she was gonna get to go to a Disney park, which was amazing, you know, when state of fancy hotel with me and it was great. And she I don't think I saw her much. You know, she thought, Well, I'm not gonna do this. You know, we'll see how it goes. And it was wonderful, but it's really hard. You know, that's one of the few programs that there is for siblings. When when he was diagnosed, we got this reminder really off the bat and it did help us set the tone he was in high But on the Saturday, and on Sunday, I had an event that I had planned. And I do talk about this in the book. But it was an ice skating event uptown. So uptown from my house is about 45 minutes. Okay. And I was the only link between these two groups. It was a group from near my house and a group from your my work. Well, the skating rink was my work. They sponsored the rink. I didn't. I was working at a radio station that sponsored the rig. And I knew that somebody could take care of it, but it was going to be difficult. And Leah reminded me like we're still gonna go ice skating, right. We're still gonna go ice skating because I live in the south. Ice skating is exotic. No, it really is. I grew up in New York. I'm like, oh, there's never been she likes frozen ice that you walk on. Amazing, right? Magic. So I said to my husband, I'm like, We're going he's like heck yeah, go take her and he stayed the hospital and that was the day after my not your two year old was diagnosed and I'm thinking is this the right decision? Is this this is a terrible This is the world's worst diabetes mom because here I am leaving the hospital. But as soon as I I got outside I knew was the right thing. And that was the day that we said we can't let this take over our lives. So you have to be careful. Like, I don't I don't I say this not to judge but just again with that mindlessness and that mindfulness or you know, if you signs in your house that are like in this house, we're blood sugar fighting, you know, ketone, chicken, whatever it is, look, the science we will have in their kitchen. Nobody, I mean, if they're all diabetes related, of course, yeah. You know, have to be kind of careful unless you also have ice skating, hockey playing, you know, unless you want to have a litany of everything your family does. You know, I'm mindful of like, how many t shirts do I actually wear that say diabetes stuff on them all the time. And making sure like, I have stuff from my daughter's programming, and frankly, from Benny's programming that's not diabetes related. It's that kind of little thing I think that siblings really pick up on, like, if you name your dog or your cat or your goldfish after diabetes stuff, you know, it's a family pad. I mean, if it's a diabetes alert doc that might be different. I just think these are things that as simple We kind of forget, you know, they're always they're always watching and they're tallying. And you have to be honest with them that diabetes gets more attention. But with Leah, just having the conversation over and over again really helped. I mean, when she was 15, she and I had a great conversation about it. She said, I was really upset about it. And now I get it. Oh, it was amazing. I mean, he probably is back to being upset about it now.
Kerri Sparling 25:22
But it was great. You guys can talk about it is really nice, because a lot of times that animosity isn't voiced, and nobody has areas to sort of air their concerns. And so it's good that you give her space and like we mentioned in friends for life, people have that space to get that stuff out there. Oh, yeah.
Stacey Simms 25:35
I'm the over communicating Mom, you're like enough.
Unknown Speaker 25:39
Talking to me.
Kerri Sparling 25:42
We've talked about community, we've talked about sharing, we've talked about Facebook and the pluses and minuses of that sort of stuff. And it and it led me to the story that you had written about Benny losing his insulin pump. And then after that, you would, which I think is an amazing discussion about the cost of supplies, and how even small Children are mindful of the cost of things. And we'll get back to that in a second. But after that story you had mentioned, places to find support for when you have gaps like that, or you have issues like that. And I would love some perspective from you on as a parent whittling down this massive diabetes online community that we have access to, to a manageable size that kind of caters to what people might be looking for, like, advice for someone who's just jumping in and saying, there's so much how do I find what's best suited for me?
Stacey Simms 26:26
Yeah, absolutely. I think the best thing to do is if you're already online where where do you like to be? Right? Do you like Twitter? Do you like Facebook? You like Instagram, Pinterest? You got to find your house, like where do you like to live? And then once you're there, find your people. And let's have a Facebook cuz that's probably the biggest for parents. I know Instagram is a lot bigger than the last couple of years. But Facebook groups are still really really active for parents. And my advice there is be careful again, not to turn your Facebook into diabetes book which is what happened to me. I am in I am in 50 Five Facebook groups about diabetes. Now granted, I joined Facebook in 2008. So I had around for a while.
Kerri Sparling 27:07
Well, I'm just it was the look on your face. It wasn't like I'm so proud to be in 55 horrified to be in 55 it was a real mashup of the both
Stacey Simms 27:15
emotions. And that's exactly how I feel. So, because I'm like, I want to be here. And I like the vibe of this group. I like the information in this group. And I like to put my podcast in this group. But what I did was I muted the majority of this groups and that has been phenomenal. If you're not familiar as you're watching or listening. It's very easy to do, you can just mute the group. I think you unfollow the group might be the technical term, but you don't leave the group. So that way, when you want to dip into those waters, it's up your time. And my Facebook feed went back to being my real life, which is my friends, the stuff does the dumb things. I follow in a little bit of diabetes, and then I can jump back in whenever I want to. And Facebook Of course will find you you know if there's something interesting, put it right in your face, on Twitter if you're there, which is Just a crazy place to be the best, just all the politics and mess but DSM a is still your diabetes, social media advocacy is still the best hashtag on Twitter. They still do the Wednesday night chats. Those are wonderful. Instagram I'm struggling with just a little bit only because I like the realness of the stories and things that people I know that out. But I've been trying to follow more people and I'm not knocking anybody, you're all wonderful and beautiful. But I have talked to two influencer type people and I complimented one of them. That was such a beautiful shot in your hair looks so good. And you know, she said, Stacy, I have a hair person and a photographer.
Unknown Speaker 28:40
Diabetes person. What
Stacey Simms 28:43
if I had if I had a hair person and photographer I could change the world. I do wear pants. I'd be wearing pants. I would have better headphones because wearing Benny's beats I thought these would be smaller. You have cute little earbuds I don't know I haven't no here but I studio cans that are like this big I thought would be even more Your cancer headphones in the biz. But I just, you know, I can't do the influencer thing. So you but you as you listen, you might love that that might be your thing, go for it. But I think you have to find where you live where you where you feel comfortable, where's your vibe, and then you'll find your people but don't let it get overwhelming. And if you find somebody that wants to call you the world's worth diabetes. You walk away walk away unless you have a book. But I mean, really, it's not worth the argument. If someone tells me I'm wrong, I'm not going to change their life probably. Maybe I can help. I've got a good discussion going in my local group right now about finding babysitters. There are people locally I run a face for parents in the Charlotte area. Okay, started a few years back and it's been amazing. And there's a discussion right now people like I will never be able to leave my children alone. Yes, you will. And here's how. And so we're trying to help each other kind of get past that right. So
Kerri Sparling 29:59
that's See, I feel like the internet is fantastic. And it's done such a great job of connecting people who don't live anywhere near one another. But when it comes right down to human connection that people really crave in those moments of need, that hyper local stuff is huge. You can recommend a babysitter to me, but they're of no use to me in Rhode Island. But for the people who live down the street from you, they can go and call that person and they can actually hire them out. And that's, that says a lot to about the diabetes community how willing people are to give those really harder and resources and to share it with their,
Stacey Simms 30:28
with their people. That's beautiful. It is absolutely amazing. And you think I mean, I know this is a CWT interview, but the first thing that comes to my mind is going to that conference or any of the conferences that they put on. I don't even worry about what I'm packing my pack everything Ben he needs but you know if he's anything, somebody's got it, and they'll have you a 2am you know, it's just an amazing community. And I don't know, I think especially locally, knowing that we might see each other at the grocery store. Like that Facebook group is probably one of the nicest groups. I'm in
Unknown Speaker 30:59
You'll have to own what they say, right? Because they may see you over avocados.
Stacey Simms 31:02
I know who you are, right?
Kerri Sparling 31:06
We've run through the questions that I had structured for the book and my preparation. But is there anything else that you feel like it would be really pertinent to share with the specifically the CW, the audience,
Stacey Simms 31:14
one of the things I've learned just doing the podcast and now on this book tour that I've been on this year, it's just fascinating as the technology gets better and better, and you know, Benny's on the newest software from tandem, and, you know, there's all sorts of great stuff coming out. It's interesting how the change from 13 years ago seems to be almost more fearful. And it's not that it's not so much that people are afraid to let their kids do things. It's that they're afraid to let their kids get out of range. I think I'm seeing that a little bit among adults as well. Now my adult view is skewed to a lot of the influencers and people that you know, sometimes I see in person, but there's this that's another thing with the the world's worst is, you know, talking about staying in range was never part of my repertoire was like go play football, and we'll figure out how to put diabetes in the picture. I'm learning that a lot of people have. We have amazing technology. It's changed so much just in the last few years. And we need to encourage each other to use that technology to live fuller lives, rather than use the technology to post graphs. And it's just remarkable to even say that to a parent who was diagnosed, compared who was diagnosed, I mean, I've gotta watch language. No, I
Kerri Sparling 32:23
will go back to that in a second. You're right. You are right. My mommy got me it was a wee thing. Just, it was a different version of wheat. So that's a very fair statement.
Stacey Simms 32:31
I think with a 15 year old to I'm really trying to change my language over it's hard
Kerri Sparling 32:35
so of him. So I mean, his health is is your mental well being right. I mean, there's, there's no separation there. It's sorry to go on a tangent.
Stacey Simms 32:43
Well, this is a great discussion. This could be for another time too. And we'll talk more in person, but I think it's his diabetes. And I'm it's the family is affected, but it's his. So that's what I mean. And I completely lost Richard.
Kerri Sparling 32:56
Oh, wait. I was waiting to with that. I started ranges range, using technology to your benefit. I sorry,
Stacey Simms 33:06
I got all I get crazy bad language right now it's it's really hard for me to change over. But I just feel like we're finding that this the state of the art. I mean, I know what I'm saying in my community, we have a pilot program where your child is diagnosed, and they give you a dexcom in hospital when you go home. So it sounds great. But the problem is that there unfortunately, I don't know there's enough education and I'm not slamming the CDs and dexcom here has nothing to do with that. It's just the diabetes is hard. And so see everything from the beginning. Maybe you get used to that, but then the dexcom comes off and they don't wanna go to school, or they don't want to go to the waterpark, or they don't want to go on that that field trip or that overnight because they've never been without the depth causeway. And we're more and more and more of that, where I would be like, Oh, I hope your inset still on, you know, an hour but you learn resiliency, you learn stuff like that. Yes, the worst. And that's the story. When he was three, we were at a waterpark. That's in here. Instead came off and his blood sugar went really high because he was terrified of shots in sets at the time. And I thought, you know what this is going to be an hour to he's going to be fine. The long term, my indices stuff like this is okay, as long as we don't do it a lot. And maybe the running around will bring him down. It didn't, you know, so he got with Ari was 400 we change this instead, we got him home, he was fine. No ketones, blah, blah. But in my local group, someone had posted my kids dexcom came off, I'm not sending her the waterpark. I'm like, come on. Yeah, I got it. Right, we got to use this stuff to live better not let it restrict us long way of getting to that point. And that's really where I think I am right now. Because, you know, the technology is fantastic, but your stuffs gonna fall off. Things are going to fail. You know,
Kerri Sparling 34:44
you know, you have to continue on several life after diagnosis thing.
Stacey Simms 34:50
So it's been a long time. Permit this year, I can't believe it. Oh, and then you get to write about driving with diabetes, which is a Book unto itself, start, the book pretty much stops in sixth or seventh grade. So I'm not going to say that I'm an expert at high school yet, because I've only had one kid go through and she didn't have diabetes. So
Kerri Sparling 35:12
Nick Jonas at one time, so there is that there is that kind of coasting through. But um, but and so you have just been so generous with your time and your perspectives, I really, really appreciate it. And if you could just do me one solid real quick and let people know where they can find you online and where they'd be able to pick up a copy of your book. And obviously, we'll be including links to that, you know, and all the notes that are around this video, but hearing it from you is great.
Stacey Simms 35:34
Oh, thank you so much. I think the best place to go is the podcast website, which is diabetes dash connections.com. And then from there, it'll link to every place else the book, the podcast, the blog, blah, blah, blah. And
Kerri Sparling 35:45
so what's the actual URL for that
Stacey Simms 35:48
diabetes dash connections. com. Perfect. And I would love to do a book giveaway.
Kerri Sparling 35:55
Oh, we would love to have a book giveaway so
Stacey Simms 35:57
I can give away. Let's do this. Let's do a paperback And let's do an audio book. Because the audio book was really fun and interesting to do. If you ever do an audio book, it's quite the experience, like reading a dramatic play. It was very strange, very strange, totally different experience than writing it. But we can do a paperback giveaway. And then the audio book, that would be my pleasure, thank you.
Kerri Sparling 36:18
That would be amazing. And I will put a link to the giveaway page in this video and on the web page. But Stacey, thank you so much for your time for your perspectives for what you've given to the diabetes community and just being my friend, I appreciate that.
Stacey Simms 36:30
Thank you for giving me an excuse to put lipstick on today. The giveaway is open until March 20. I will link up all of the information you need. It is at children with diabetes at their giveaway page. You have to go there you can't do it on social media. We're giving away a copy of the book in paperback and an audio book as well. I'm really looking forward to seeing everybody from friends for life and children with diabetes at their conference coming up at the end of this month in Indianapolis. I'm hoping the travel plans you know stay the way we hope we are watching The virus situation I'm really not sure what's going to happen with travel. But Fingers crossed right now that we are able to do this. And I really appreciate partnering with them on this giveaway and being selected for one of their storyteller interviews. So it's really fun. Okay, our next episode next week, we should be back to normal around here minimum normal being a relative term with me. But our next episode is going to be focusing on Lilly, Eli Lilly announced almost two years ago now that they the makers of human log are getting into the pump and pen business. So we will talk to them about how they're progressing on this connected system. It's a smart system and they are partnering recently announced with dex calm, so we will be talking to them about the progress they've made and what it means for the industry. That will be next Tuesday. Okay, I'm Stacey Simms. Until then, be kind to yourself.
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