It's our annual game show episode! This year, because of all the Zoom calls, we decided to play the HollyWood Squares! Of course, since this is a show for the Friends for Life Conference (FFL, pronounced Fiffle) we're calling it The FFL-Wood Squares!
Huge thanks to our panelists:
Kerri Sparling, Edward Hawthorne, Dr. Henry Rodriguez, Chris "The Grumpy Pumper," Moira McCarthy, Renza Scibilia, Oren Liebermann & Cherise Shockley. Learn more about them in the FFL Conference Program
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Transcription In The Works
Before hydroxychloroquine was part of the national Covid conversation, it was being looked at in studies to see if it might help in the prevention of type 1 diabetes. Recently JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s Hydroxychloroquine (HCQ) Prevention Study. JDRF was kind enough to share the audio with us for this week's show.
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, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider.
This week, we're talking about hydroxychloroquine. Yeah, that's right before it was part of the National COVID conversation is being looked at in studies to see if it might help in the prevention of type 1 diabetes.
Welcome to another week of the show. I am so glad to have you along I am your host Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection my son was diagnosed with type one more than 30 years ago, he was a toddler at the time and now he is 15. My husband lives with type two. I don't have diabetes. I have a background in broadcasting local radio and television, we decided to get the podcast, which is now more than five years old. So if this is your first episode, thrilled to have you here, please go check out the website Diabetes connections.com. We have a very robust search we have more than 300 episodes now. So there are ways to get to it by date by keyword by subject matter. If you'd like to go back and start it episode one. You can use any podcast app as well. Wherever you listen to audio at this point, you can get this podcast.
This week's show is unusual in that it's not an interview, as I usually do. Recently, JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s hydroxychloroquine prevention study JDRF was kind enough to share the audio with me. I found this so interesting like most people, I heard About the drug this year because of the whole conversation about COVID and could it treat it and that sort of thing. Many of you probably knew about it long before that in relation to lupus and arthritis and malaria, but I didn't know it was being studied at TrialNet.
So you'll hear from Dr. Buckner in just a moment but first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the sleekest looking and most modern meter My family has ever used and it is not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strips subscription plans, pick as many test strips as you need, and they'll deliver them to your door. One Drop diabetes care delivered, learn more go to Diabetes connections.com Click on the One Drop logo.
Dr. Jane Buckner is the president of Benaroya Research Institute at Virginia Mason in Seattle. She's also a rheumatologist who takes care of patients with rheumatoid arthritis and systemic lupus. She studies type 1 diabetes as well and is the co chair of the hydroxychloroquine study at TrialNet. Now, we've talked about TrialNet, and we've talked to TrialNet, or at least the people who work there. Many of you know that group as the people who will test your child's siblings or you or other family members for markers of type 1 diabetes, but they are tasked with the mission of finding out how to prevent type one. And so testing is just part of that. I mean, that's really where they get the ball rolling, but they have some incredible studies and I will link up more information and more episodes that we've done. We've done several with trial that I'm a big fan and I'm a big fan of anybody who takes part in their research going through those studies. Just having a family member tested. I think that's a big deal. And we should applaud everyone who does that.
Quick note, again, this is more of a speech, right? I edited out some of the stuff here to Facebook Live the pauses, stopping as she reads the questions to herself. There are some beeps, there's some audible noises I couldn't take out but it's really fine. All right, here is Dr. Buckner, just after she has introduced herself and her role at TrialNet.
Dr. Jane Buckner 4:25
And so we'll talk about a little bit about TrialNet first and then talk very specifically about this prevention of type 1 diabetes using hydroxychloroquine. Why did we pick this drug? How are we doing the study? And then also we'll talk about how to participate and take questions. Type 1 diabetes TrialNet is the largest international type 1 Diabetes Research Consortium comprised of over 100 locations and its mission is to prevent type 1 diabetes and stop disease progression by preserving insulin production before and after diagnosis. And so there's In a series of studies, there's a pathway to prevention. That's what we call a natural history study where we screen people who are at very high risk for developing type one diabetes, and we monitor them over time. We also do intervention trials in new onset diabetes. And we are now doing trials to prevent development of diabetes.
The other part of the work we determine that where I've been really involved over the years is what we call mechanistic studies. When we do a clinical trial, we can go back to the lab and we can look at the blood samples from patients and try to understand why a certain intervention worked are help slow the progression of diabetes or loss of insulin production, or why it didn't work. And so that's where I've been involved over the years thinking about type one diabetes and what got me interested in this clinical trial.
So why is TrialNet testing hydroxychloroquine to prevent type 1 diabetes? The first thing we need to talk about is thinking about type 1 diabetes. As a disease that progresses over time, we know people are born with a genetic risk, particularly relatives of individuals with Type One Diabetes children, or siblings of individuals with type one diabetes have a much higher risk of getting diabetes. And that's because of their genes. We know at some point along the way, in some people who have that genetic breast, their immune system gets activated, and they begin to develop immune responses that target the beta cells in the pancreas.
What we've learned over the years, with the studies done by many scientists, but including those in town, that is that there's several stages to developing diabetes. There's stage one, which is where people have to autoantibodies but their blood sugar is still normal, and their pancreas is still functioning well, they don't know that diabetes, but in fact, they are on the road to developing diabetes and it's just a matter have time, at stage two individuals have these auto antibodies, that they now are starting to have abnormal blood sugars. And finally, at stage three is when we think of the classic clinical diagnosis of diabetes where individuals require insulin.
Well, so the goal is actually, in this study, to prevent people from going from stage one, to stage two or stage three. The idea is if we treat people early at this very early stage of diabetes, where they have the immune response already targeting their islet cells that make insulin, if we could stop it from actually continuing, then we could actually keep people from getting clinical disease. So that's our goal with this study. So why did we pick hydroxychloroquine and in part of the story here is that I'm a rheumatologist and rheumatologists use hydroxychloroquine to treat many autoimmune diseases, particularly rheumatoid arthritis and systemic lupus, it's an oral therapy. It's a pill that you take once or twice a day. And it's used in these diseases and has been used Actually, it's a drug that's been available for over 60 years, initially developed to treat malaria. But in studies used by rheumatologist, it's been demonstrated to be very useful in rheumatoid arthritis and lupus. It's FDA approved to use in children and in pregnant women. And I have to tell you, it's not common a drug is considered that safe to do both of those.
we know a lot about this drug. We know a lot about how it works, but more importantly, we know about side effects with this drug. So why should we think about it? Well, there's clear efficacy in lupus and rheumatoid arthritis that we know and I'm just going to say that one of the things we also know about lupus and rheumatoid arthritis is that there are diseases where people make auto antibodies that target different parts of them. body. We know those autoantibodies happen before individuals come in to see their doctor with these diseases and they predict development of the disease. There's been small studies that have been done that suggests that taking hydroxychloroquine before someone who gets a disease, let's say they have their very high risk for the disease, they have a relative who has rheumatoid arthritis or lupus or they have some initial signs of those diseases. And these early studies suggested that they may well prevent development of the full blown disease. And actually this idea of using hydroxychloroquine early before people develop clinical disease has also now part of large clinical trials in both individuals at high risk for rheumatoid arthritis. And a study for people at high risk for lupus and the rheumatoid arthritis study is called stop ra where individuals who have auto antibodies or have relatives and are at various high risk for the disease or start on hydroxychloroquine early and they're following them to see if they develop rheumatoid arthritis or if hydroxychloroquine actually prevents the disease.
at trial that we were talking about what would be a good intervention to use to try to stop that progression from stage one to stage two and stage three, what would be safe enough for us to give children and people who were otherwise healthy, and also had made sense from an immunology point of view, and that's why we chose hydroxychloroquine. What we're doing in this trial is thinking about how type 1 diabetes starts, and that stage one where there's two or more autoantibodies, but normal blood sugar, and our goal is to stop at that point so that we can maintain a normal blood glucose and stop beta self destruction. The goal is to delay conversion to stage two and that would be having auto antibodies and abnormal glucose tolerance and to maintain that current level of beta cell function. And so the way we design this study was to actually look for individuals who are participating in the trial on that pathway to prevention, who we know have two or more auto antibodies, but still have normal glucose tolerance. So they're stage one.
And because this drug has been used in in young children, we're able to start as early as age three. But we also are including adults as well. This is a study where it is placebo control, two out of every three participant will get the study drug, and the others, one third, we'll get received the placebo. This is really important in clinical trials, because we have to know not only if the drug works, but we also need to make sure that it doesn't cause harm. And this placebo control group helps us know both of those answers.
This is a randomized trial. So a computer randomly selects who gets the study drug, and it's double blinded. That means no one knows Who is in which group until the end of the study and that includes the clinical coordinators, physicians who are participating in working with study participants. So some of the details and safety has become an issue that's much more on people's mind because of the use of hydroxychloroquine in the setting of COVID-19. And I can speak particularly to that as well. But let's first start by remembering that hydroxychloroquine has been used for over 60 years and is FDA approved for pregnant women and children. When we started considering the use of this drug. We worked within TrialNet with a group of infectious disease experts for study design, and we also monitor all the side effects throughout the study. Importantly, we know from treating particularly patients with lupus and rheumatoid arthritis, that adverse outcomes or safety issues are linked to the dose of the drug being used, the length of time that it's used other medications that a patient may be on.
So when we do this study, we screen people who are participants for potential complications at the time that we randomize them. But we continue to follow for those at the time of the study. And I can go into more detail about this. Since we've been recruiting for this study. For over a year. Now, we now have a very good sense as well, not only from historical results with our patients from the rheumatology clinics, but also from the individuals participating in this trial. And just a few things about this trial. So, participants, this is a capsule that's taken by mouth as instructed. And our goal is to have people in this study taking this drug until they progress to stage two, that's the abnormal glucose tolerance, or stage three, which is diabetes onset. So it's it's a study where the participants are in it for several years. They have an initial study, visit, followed by three months, six months, and then every six months we see the participant in the study visits last three to four hours. And of course, all of our treatments and exams are provided at no cost.
Here we have one of our study participants, Laila who's for taking her study medication, and you can check out her video online. Just a little bit about how to participate. The first step is to enter pathway to prevention, which is the TrialNet study where anyone aged two and a half to 45, who has a sibling, a child or a parent with Type One Diabetes is encouraged to participate and be screen. But we also broaden that to include not just your parents or siblings or children, but also Uncles, aunts, nieces and nephews. And we have quite a large group of participants in this and this gives us the ability to screen to see if you would be a person who has those two auto antibodies and would be qualify for this study. And to do that you can visit the trial on that site that we do home At home test kit. So this can much of this initial work can be done at home. And then we can have you in touch with people to understand if you would be a good participant for this.
So I'm going to take questions now and I will go into more depth about hydroxychloroquine safety and try to answer other questions. The first question is, do you have any intervention trials currently recruiting? And so this is actually a really interesting question because TrialNet always wants to have intervention trials ongoing. So we have a series of trials in nuance at type 1 diabetes, and then we had just opened another trial in individuals who had to auto antibodies and abnormal glucose tolerance. Some of those trials are on hold, and that is because of the covid 19 pandemic there has been concerned about using medications that may suppress the immune response. So currently We are following the patients who have already received treatments. But we are not bringing on new subjects at this time. I would say our goal is to do that once we have a better understanding about how to move forward. But really interestingly, hydroxychloroquine is not considered immunosuppressive we started that trial in the summer of 2019. And we have continued that trial throughout the pandemic because it was felt that it did not put our our subjects at increased risk. And of course, at one point, there was thought that it may be helpful. We have asked our participants to continue taking their medications as prescribed throughout this period with the COVID-19.
Yeah, so one of the questions is Could this be of any benefit to long standing diabetes patients who have no c peptide? And part of this issue is this beta cells that are stunned, so may be able to recover? That's one of those really interesting areas, and I think that the jury is out on that. Part of the reason that we decided to study hydroxychloroquine in these individuals who are in stage one is we think the role that hydroxychloroquine may play may stop the immune system, what we know is the immune system gets activated, and then it's a little bit like a steamroller, increasing and increasing in its aggressiveness against the body and against particularly the beta cell. And our hope was to stop it early before it picks up too much speed. And that's what we think hydroxychloroquine doesn't mean that it might not be helpful in this setting where we may have beta cells that are our stun and and it may become useful in individuals where once we've cooled down the auto immune response, maybe with another medication, that this may be a drug that we could use long term to maintain that kind of tolerance or quiescent stage. So I think we'll we'll have a better idea when this first trials done.
Yeah, so the next questions is have have we seen any patient with negative side effects that you've heard so much about, and I know a lot of people are nervous because of what they've heard on the news, and so I kind of wanted to relate our experience. The first thing I could say is that we have our experience with our subjects in this trial, but as a rheumatologist, I have been prescribing this drug for, I hate to say it, but almost 30 years. So I've been been taking care of patients with lupus and rheumatoid arthritis who have been taking hydroxychloroquine throughout my career, because this is a drug that's been used for a long time. And I'd also like to say those patients take the drug, many of them for 10 or 20 years. So my experiences that and our experience with our subjects in this trial is that some people do have some side effects. Most of them tend to be more like some mild gi upside, initially, maybe a side effect. We also have to watch out for the eyes in this setting. We know that long term use of this drug can impact the eyes, so participants get regular eye exams as part of the study. So if there's any problem, we capture that quickly, and we have ophthalmologists who help us with that. There's also been concerns about cardiac arrhythmias with this drug. And that's been, you know, highlighted in the setting of COVID-19. I think it's important in that setting to understand that dose matters. And in some of those clinical trials, where we saw cardiac arrhythmias in COVID-19 patients, the doses were higher than we are using. The second point is that those individuals are under are extremely ill and in fact, are having some potential cardiac problems as part of their disease. So I think that's really quite different than what we see in a pattern in our patients in this trial and what I see with my patients with rheumatic diseases, that being said, the other issue is when you give this drug with other drugs that can aggravate or bring out a potential a rasmea We have been very careful throughout this study to have a large list of medications, we track those. And if it if one of our study subjects takes a medication we think could complicate it, we may hold the drug for a while. Right? And then one of the questions is about the dose, and we do select a dose for patients based on their weight in size. And the dose that our patients, if they're a full sized adult would take would be the same as the dose that I would be giving a lupus or an RA patients, for example. The next question is, is there any promise here that if beta cells are replaced in someone who has diabetes that hydroxychloroquine could prevent those new beta cells from being killed off? It's another really great question that we think about a lot at trial that, you know, again, I think with islet cell transplant, or pancreas transplant, you're probably going to need a stronger medication to control the immune response against that transplant. So at this point, I would say it could help After that initial immune response was controlled, but probably not initially, I would suggest that we would need a stronger immune suppressant drug because it's a transplant.
I have a question about Can I tell you about why I think hydroxychloroquine will delay and prevent onset of type one. So that is one of those very interesting questions. So we've been using, as I said, hydroxychloroquine in the setting of lupus and rheumatoid arthritis for I think, 40 years in Rheumatology and myself for 30 years, and we've learned a lot about the immune system over the last 40 years. So when it was first used, really no one knew why it worked. They just knew it worked. And of course, that's the most important thing for patients. What's happened as we've gotten smarter about immunology is people have devseloped a much better understanding particular about why hydroxychloroquine work and lupus We think the auto antibodies are triggering an inflammatory response. And hydroxychloroquine actually acts within the cells to stop that triggering of the response. It's something called toll like receptor activation. So we think it, it stops some of that kind of unusual or abnormal activation of the immune system. But it also has an impact on how the immune system kind of shows that something's foreign and you should attack it. And hydroxychloroquine can actually impact the ability of presenting what we call self antigens to the immune system. And I think that's a really important part of this communication. There's a communication between B cells and T cells that I think it's really vital that it's impacting, and that's why I think it's going to be important in people who only have two auto antibodies but haven't moved further yet. One of the things we might think about doing after this trial is to even go earlier for those people who only have one auto antibody, who may not get Type One Diabetes if we could get in there even sooner, and we think that might be a good place to intervene. The question is, how long after diagnosis can be enrolled in a new onset study and each study that we do we have a particular plan to enroll for new onset. And so I think that is important to be in touch with TrialNet and find out what study would suit you if you have been very recently diagnosed. There are typically some studies that quite a few studies that enroll but we also are interested in some studies where people who've had diabetes for a while may help us understand the disease better. One of the other questions is have we thought about trying this in stage two or stage three, and we have not we have talked about where we think this drug would be most effective, and we thought stage one or even the single autoantibody high risk individuals would be where it would be be most effective. So we wanted to do that trial first. And if it's effective there, we would obviously then think about moving in into later stages. Those are all the questions I've seen. I really appreciate that you've taken the time to spend with us today. To hear a little bit about this study. I'd like to encourage anyone who has more questions or is interested in participating in any of the studies and trial mat, whether that's pathway to prevention, or one of our clinical trials to please contact TrialNet. Thank you very much, and I hope you have a great rest of your day.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 24:46
More information and if you'd like to watch that as well, I will link it all up at Diabetes connections.com. But as usual, with our episodes beginning in 2020, we are providing transcripts for all of these episodes. So if you know somebody who would rather read Then listen, go ahead and check it out. And if that's maybe you, you can go back. And listen, I'm trying to add in more transcripts for previous episodes, but it is from January of 2020. On if you're looking for that, and I have a question for you, and I have a deal for you. So stick around for just a moment.
But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom. Back in the olden days before share, gosh, we've been with them for a long time. So trust me when I say using the share and follow apps make a big difference. Benny, and I set parameters now but when I'm going to call him how long to wait, that kind of stuff. It helps us talk and worry about diabetes less. You know, if he's asleep over away on a trip, it gives me so much peace of mind. It also helps if I need to troubleshoot with him because we can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set also help us from keeping the highs from getting too high and help us jump on Lowe's before there were a big issue. Internet connectivity is required to access separately Dexcom follow app to learn more, go to Diabetes connections.com and click on the Dexcom logo.
So I said I had a question and a deal. So here's the question. What do you think of episodes like this, where it's not an interview, but I'm bringing you information that has been, you know, already put in the world via a Facebook Live or somebody giving a speech or a conference presentation, whether it's virtual or in person? Do you want to hear more of that I've done this sporadically over the years. Personally, I love it because I can't catch all the stuff that's going on right now. I did not see this Facebook Live as it was live. But I wanted to make sure to catch the information. So if this is something that works for you, let me know because I'd love to reach out to more diabetes organizations that are doing things like this and see if we can give a kind of a second life to some of the stuff that they've done. We don't want it to be one and done right if it goes out there once did it work for you? Is it okay that you didn't see her She did have slides. I listened without the slides. And I didn't think it really made a big difference to me. But if it did to you, if you felt confused, let me know. I'll see if I can grab the PDFs from JDRF. I'm not quite sure how to share those in the show notes. But hey, we can try. So that's the question.
And the deal is the world's worst diabetes mom is on sale. And this is kind of a two fold thing. So it's on sale at the website at Diabetes connections.com. If you use the promo code FFL2020. That was for friends for life, the virtual conference that happened earlier this month, that promo code will save you $4 off of the cover price. Again, it's FFL2020. And Amazon has also dropped the price of the paperback as of this taping. Amazon doesn't alert you when it does this. It just it just does it and I have a feeling it's because of the special we ran in the sales were making on the website, but they dropped it as well. And if you're a Prime member, of course you get free shipping. So I sign books that come through the website. I can't see seiner personalized books that go through Amazon, but it's on sale in both places. No promo code needed on Amazon do not know how much longer it'll be for sale like that on Amazon. But the ffl 2020 promo code is only good till the end of July. So go get it. Speaking of friends for life, the next episode should be just a couple of days from now I'm working on a bonus episode of the faithful Woods squares. This was the game show that I did it friends for life, and we're putting out video form but I'm also going to put it in podcast form just to cover all the bases. So hopefully that'll be out in just a couple of days. And you can enjoy that it really was fun. I'm so glad it turned out well, what are we going to do next? I got more requests to do Hollywood Squares again or FIFA with squares. I usually do a take off of NPR is a Wait, wait, don't tell me as we don't poke me. But I'm kind of thinking about doing some kind of Family Feud?
Stacey Simms 28:53
All right. Let me know what you think. Thanks, as always to my editor John Bukenas of audio editing solutions. Thank you so much. much for listening. I'm Stacey Simms. I'll see you back here for our next episode until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved, All wrongs avenged
Why do you love your pump? We asked listeners to give us short reviews of the systems they use. This is sort of a companion piece to our last episode – when we went through how to choose a pump. That was more about process. We talked about how you can’t make a bad or wrong choice, and this episode really bears that out.
Spoiler – every pump has big fans.
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, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:28
Welcome to a bonus episode of Diabetes Connections. We're going to talk about why we love the insulin pumps we use, or really you use. I asked listeners to give me short reviews of the systems they love. And I cannot thank you enough for sending these in. This is sort of a companion piece to our last episode, we went through in detail best practices of choosing a pump, right not which pump but that was really more about process. You know you really cannot make a wrong choice here. This episode really bears that out and might be a disappointment to some of you I'm sorry to say but spoiler alert here. Every pump has big fans.
I asked in our Diabetes Connections Facebook group who loves their systems, what do you love about it? Then I had one adult with type one and one parent of a child with type one to chime in on each pump system. So these are pump systems that are available in the United States. There are only three pump companies right now, Medtronic, Tandem and Insulet making pumps that are available in the United States. I decided no DIY for this because people who use DIY systems generally know enough and educate themselves enough about their options. And their options are different, right? So these are the commercially available pump systems and they're actually for all of them. the very latest, which I didn't expect and didn't ask for, but it turns out everybody who chimed in, is using the up to the minute latest system as we are recording here in the middle of July of 2020.
If it sounds like these folks are reading, they probably are. These aren't actors, as they say they're real people. They weren't actually interviews. I just asked them to send me the audio. I gave them a little bit of a prompt, and then said, just send me some short stuff. Some people are a little shorter. Some people are a little longer, but I think you're going to get the idea pretty quickly.
Let's start with Medtronic. And both of these folks are using the 670G system.
Hello, I'm Shelby from Elizabeth City, North Carolina. My daughter Caroline was diagnosed with Type One Diabetes on Thanksgiving Day. 2017. And she's now 10 and a half years old and thriving with a Medtronic 670G insulin pump. We got this pump shortly after her diagnosis in January 2018. I love the automated feature that adjusts the basal rates either up or down based on how Her blood glucose is trending. The pump is waterproof, which is great, since we do a lot of swimming in the summer. And if we're going to have extra activity, we can tell the pump to set a temp target which helps keep her from going low. The CGMs the continuous glucose monitor that works with the pump does not have a share or follow feature at this time. But we found a do it yourself workaround called Nightscout, which in my opinion is superior to the typical share follow function on other CGMs systems. I'm definitely excited about the new upgrades that Medtronic is coming out with, but for right now we're very happy with the overall control that she has with her blood glucose with very little need for micromanaging on my part or her part. So that is my thoughts on the 670G
Hi, I'm Phyllis. I'm from the greater Boston area and Massachusetts. I've been living with diabetes for over 40 years and have been using the Medtronic Minimed 670G system for about three and a half years. Originally, I really was interested in the 670G because of auto mode. Although to be honest, I wasn't sure that the system could do better than I could with managing my diabetes. But I was pleasantly surprised. One of the areas that I was really looking forward to with some help is around exercise and the systems built in temp target of 150 really took the guesswork out of my workouts. So now three and a half years later, my time and range is generally about 85% with minimal effort when I put a little bit more time and pay attention to what I'm doing and eating that easily bumps up to 90% and that equals average A1C of about 6.2, 6.3 for the last three and a half years. I feel better about everything. I physically feel better and really excited about this system.
Stacey Simms 5:06
Next up is Tandem. And both of these listeners, just like with Medtronic are using the latest model. They're using a tslim X2 with Control IQ.
Chris Wilson 5:16
Hi, this is Chris from San Diego, California. I've had type one for almost 23 years and I've used a pump for five of those years. I use a Tandem tslim X2 with control IQ. I started with the original tslim upgraded to the X2 when it was released. And I've been through three major pump software updates in that time. The thing I like most about the pump is Control IQ, which is Tandem’s advanced hybrid closed loop software. I was initially drawn to the tslim by the touchscreen user interface and the rechargeable battery. The only thing I'd improve is the cartridge fill process which is a little complicated but gets easier with practice.
Hi, I'm Beth and I live near Denver, Colorado. Our six year old has had Type One Diabetes for three and a half years. She started on an insulin pump six weeks after diagnosis And has been on a Tandem tslim for approximately a year. She's been on Tandem tslim with Control IQ for seven months. We love that it communicates with her Dexcom CGM and gives her more or less insulin as needed. The exercise mode is great for bike riding and swim practice and the touchscreen is simple enough for her to operate herself. She loves that her blood sugar and trend arrows are visible directly on the pump. With Control IQ. My husband and I have had the most uninterrupted sleep since before our daughter's diagnosis. We couldn't be happier for this technology. This pump is the best choice for our family.
Stacey Simms 6:34
And finally, the people who are using the Omnipod dash system.
Hi my name is Lynette and I live in the Atlanta area. My son was diagnosed with type one two years ago yesterday and we have been on a pump since October of last year. We started on Omnipod the biggest reason he chose Omnipod was because he did not want a tail as he said, or tubing. We went with the tubeless pump we love that it's waterproof we love that he can shower in it believe that he we can do smaller amounts than you can with pens because he tends to need smaller amounts than half units. We love just everything about it. To be really honest, our only major complaint is that it tends to come off on pool days and we've tried lots of different options for keeping it stuck and so far we haven't found something that works. But other than that we're super happy with our Omnipod dash system.
Thanks. Hi, this is Sondra and I live in Tacoma, Washington. I was diagnosed with type one in 2006 when I was 57 years old. I did MDI for a year got the Dexcom in 2007 and still struggled with random overnight low lows in 2008. I started using the Insulet Omnipod. I chose tubeless as I had struggled with sleep since menopause, being able to have a very low basal rate overnight has helped me so much with my nighttime lows dialing in basal rate It says made managing my type one much simpler. I love being able to do watersports and not worry about being unplugged from basal insulin. I'm looking forward to the Omnipod five which will create a closed loop with my Dexcom six. I'm hoping the FDA approval for the Omnipod five and Tidepool Loop come soon.
Your listening to Diabetes Connections with Stacey Simms.
Stacey Simms 8:29
Thank you so much for sending those in. Isn't it interesting that it's pretty easy to find people who love whatever system that they're using? I didn't have to hunt high and low I put an ask in the Facebook group and found a whole bunch of people. In fact, I had to cut off the comments. We had so many people who wanted to say how much they loved the system that they use!
Of course, there are personal factors and preferences that come into play. So just like we said in the previous episode, you got to see these systems you got to hold them in your hand. And I do think you need to know also as you listen and you we've assumed this but just in case, all six of those folks are using a system, not just a pump, so they're using a continuous glucose monitor.
In the case of Tandems tslim, they're using the Dexcom. Same thing with Insulet Omnipod, they're using the Dexcom. With the Medtronic 670G, they're using the Guardian sensor three, which is a Medtronic sensor. It's actually the only one with the same company. The other two are separate companies with working agreements.
You can use an insulin pump without a CGM. We did it for almost seven years. Between the ages of two and nine. My son Benny did not use a continuous glucose monitor but he did get an insulin pump six months into it, at age two and a half. He just used a pump and certainly you can use it that way as well. We now use, as you likely know, if you listen, we use the Tandem system we have the X2 with the Control IQ software. We've had that since January. Benny wears a Dexcom CGM and we love it. I think it's a fabulous system. There are aspects about it that he really enjoys and prefers that you know, friends of his don't feel the same way about.
I’ll lay it out here, I've said it before. What he likes about the tslim is that he doesn't have to have an external controller. There's no PDM for it as there is with the Omnipod. He likes that it's flatter on the body. And he absolutely loves the Control IQ software, which has not only lowered his A1C significantly, it's done it with less work from him and less nagging from me, although he still argues that I may like him too much. I mean, come on, man. But he's 15. I guess that's his job.
I will say though, in all fairness and knowing what I know about the diabetes community and the technology that's out there, a lot of people feel very differently, right? There are a lot of people who prefer the flexibility of sticking an Omnipod anywhere they want on their body. They don't care about schlepping a PDM. They like that. It's waterproof. They like that they can remote bolus their kid. That's a big deal. We talked about that last week.
And for Medtronic, people, there's a lot of people who like that it's all in one (note: I mean that it’s all one company. There is no “all in one” CGM/Pump device). They like that. They don't have to go to different companies, and they like that their doctor may be more familiar with it.
Is there a downside to every system? Sure, I went through a couple of pros and cons there. But it does come down to personal preference, I am going to link up a lot more information about these systems and what's coming. Unless something really bonkers happens. And you know, the delays from COVID, or something really goes wrong. They're all on track to be controlled by phone, if not by the middle of next year, then in the next couple of years. And once that happens, and you get true remote bolusing for all of these systems, then it's really going to be personal preference. I mean, once that happens, it's going to be absolutely amazing. But you cannot buy today on promises of tomorrow.
You know that it is of course worth noting that podcast listeners are more educated and have more money than the population overall, not just in diabetes, not just for this show. That's really just podcasting. So it's not really a big surprise to me that we easily found six people using the latest and greatest. Of course, there is so much to talk about in the diabetes community when it comes to access and affordability and insurance and affording the insulin that needs to go into these pumps. So I don't gloss over that. We've talked about that many, many times before and will continue to do so. But this particular episode, I hope is helpful in seeing what people think about the technology that is out there right now. There really is no one answer.
I'm going to tell you one quick story before I let you go here. And I'm sorry, I apologize in advance to all of my rep friends, the reps for all of these companies are just like everybody else. There's wonderful ones, and there's people in it for the money. And you have to be careful about claims. And I'm not singling anybody out. I'm not singling any company out. This happens here, there and everywhere. But I was at a conference years ago, and I went over to one of the booths just to check out and see when I go to all the booths see what's going on. And the rep for this pump company said to me, if you switch to our pump, I guarantee your son's A1C will come down half a point I asked him about that. And he gave me some cockamamie answer. If I tell you more about it, you'll know the pump company. So I don't want to go into it. But I mean, it was really a stretch. But if I had been a newer diagnosed family, I think I would have been very much influenced by that. I asked him if he had any literature and studies to back up his claims, and he did not. But he said he would email me something, I gave him all of my information. Of course, I never heard from him again, the idea that switching technology can lower your a one c by a certain point, and that's why you should switch. That's a tough one. I just said that control IQ dropped my son's A1C significantly, right. But you know what? It's the whole story of him. It's not just that pump system. If we were new to pumping, if we didn't have the settings right, if he didn't know how to, you know, do certain things if he was going through a phase or something where he didn't want to do anything. If he wasn't having success with the CGM if he was getting a rash if it wasn't working For him, if it was falling off, if the pump wasn't comfortable, if it wasn't the pump he chose, and he didn't want to use it, there's a lot of things that can happen there.
Pumps are not a panacea. And anybody who tells you that they are.. I want to be careful what I say here. But let's just say they may not have your best interest at heart. So my good guy reps, and there are so many of them. And we have one who is amazing, and I love and is one of our heroes in the diabetes community. I'm sorry for that. But I think it's really important that people understand it's just like the endocrinologist who says, I'm only going to learn this system. So you can't have a separate pump, because I don't want to learn another system. Right, man, we got to fight for so much in this community.
I hope this helped. If you have any more reviews or questions about pumps jump into Diabetes Connections, the group will have an ongoing discussion there. And I kind of hope this helps you think a little bit more critically when you see these discussions in other Facebook groups, but let me know what you think. And I will link up in this episode a whole bunch of guides from different And organizations who've done really good work comparing the technology that's out there pro and con, and please go back and listen to the previous episode about how to choose a pump if you haven't already. thank you as always to my editor John Bukenas from audio editing solutions and thank you for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
“What insulin pump should we get?” is a really common question. But it isn’t the right question, at least to start. We're turning that around into, “If I want a pump, how should I choose one?” After all, every pump out there has devoted fans, which tells you there isn't a bad or wrong choice. Stacey is joined by long-time diabetes advocate Melissa Lee and together they lay out what adults and parents of kids with type 1 need to think about.
This show discusses insulin pumps available in the US, but the ideas and conversation can be applied to any make and model pump on the market.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:22
This week. What insulin pump should I get? You know what? That's not really the right question. You have to start with, if I want a pump, how should I choose one? After all, every pump out there has devoted fans
Melissa Lee 0:32
And what that means is that there's not a bad option. There are certainly options that might have a specific feature or style or might fit in with your lifestyle better, but there's not a bad option.
Stacey Simms 0:44
That's longtime diabetes advocate Melissa Lee, she's talked about this issue for years. And together we lay out what adults with type one and parents of kids with type one need to think about. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm so glad to have you along. I am your host, Stacey Simms. And if you are new to the show, because you heard about us or saw me at Friends for Life, the virtual conference that happened last week, I am thrilled to have you here. What a great conference that was, oh, my goodness, I hope you had a chance to participate. They had so many more people because instead of being you know, in person in July in Orlando, unfortunately, they had to go online like everything else this summer. But the plus side of that was that so many more people could participate and learn about Friends for Life and learn about this community that we've been so fortunate to be a part of for many years. Now. This isn't an episode about that. I won't talk too much about it. I hope you've followed along on social media. And please reach out if you'd like to learn more. I'm really looking forward of course, to getting back to in person appearances, but I think Friends for Life has really set the gold standard on how to do these events virtually. It was really well done.
I've wanted to do an episode about choosing an insulin pump for a while I did one way back when, and I can link it up in the comments, but you have to know if you go back to it that it's pretty dated, but it was going through all of the options at that time. And I've realized since then, that it's really not about which pump, right, it's about choosing the pump. But I know that you want to know more about the different kinds of pumps and which one people think is best. So I'm putting out a separate episode in just a few days with what I'm calling true believers, people who love the insulin pumps that they're using right now. And that episode will have a little bit more editorial to it. This week, though, I want to talk about process, you know, beyond tubes or no tubes. There is so much more to it than that. If you even want to switch to a pump at all, which you know, you don't have to do I hope this episode clears some things up and gives you tools that you can use going forward as you make these decisions.
Diabetes Connections is Brought to you by One Drop and getting diabetes supplies, you know, pumps, supplies, meter supplies, whatever you're looking at. It's a pain not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plants. Plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one they just get One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to Diabetes dash connections dot com and click on the One Drop logo.
My guest this week is always terrific to talk to in fact I just had her on the show a few weeks ago. Melissa Lee is a longtime blogger and patient advocate dogs goes with type 1 diabetes at age 10. She is known for her extensive knowledge of diabetes technology and her role as a leader in the diabetes online community. She was the former tech editor of a sweet life. And that's where I first saw our technology reviews. She also did it on her personal blog, sweetly voiced and she'll talk about that she led diabetes hands foundation as its executive director before serving as Big Foot biomedical’s Director of Community Relations. And right now she's leading clinical training content development at tide pool. So Melissa has worn a lot of hats and she is very careful as she speaks to let us know which hat she is wearing. But I saw Melissa do a technology presentation years ago and I thought Yes, we've got to have her on the show for this. Before we jump in. I gotta let you know. We do talk about insurance and your medical provider and stuff that may seem boring in the beginning here, but it really is important. I mean, who's gonna pay for this right? What's your provider going to talk to you about? These are things we have to really get into if you are here for tubes or no tubes skip ahead to about 20 minutes in when we do talk about, you know, active kids and active adults and tubes and pumps and the nitty-gritty of what you have to carry with you. But really don't skip those first 20 minutes. I really do think these are topics that maybe aren't talked about in those Facebook groups when we're talking about pumps, but they are so important. All right, here we go. Melissa, thank you for jumping on. I'm really looking forward to this conversation. I feel like I learned something every time I talk to you. Thanks for being here.
Melissa Lee 5:31
And I will thank you so much for the invitation and for touching on this topic that so many people have questions about.
Stacey Simms 5:37
One of the reasons I wanted to talk to you, in addition to knowing you've done this presentation is to know that you have used a lot of different pumps, like a dozen different kinds of pumps. Is that mostly to get the experience from how do you do that?
Melissa Lee 5:50
Oh, well, that's it's a very good story. So I got my first pump. I was 20 years old, it was the year 2000. And there were only one or two options on the market now. I went with the one that my doctor said, well, all my patients are on this one. And it was a Medtronic, I followed a very traditional pathway, I think that many of your listeners probably follow, which is I got a pump from a company, when they released a new version or a new software upgrade, I upgraded. And I went through that process three or four times. And I stayed on Medtronic pumps for nearly eight years. And they served me very well. But what I also didn't do during that time was, you know, I was in my 20s. First of all, I wasn't watching the market to see what else was developing. And I would start to hear in my late 20s Oh, you know, there's some other options. I was married to Well, you've had us both on the show, married to a technology guy who is an early adopter of many technologies and, and I really have to, I mean, in so many ways, I credit Kevin with a lot of things, but my husband Kevin said if you want to try something else, like your warranties up if you want to try something else, and you don't like it, that's okay, like let's see what else is out there. There, and suddenly I had this. First of all, I had a husband, who had more income than I've had as a single teacher, but he, you know, we had good insurance and I could say, Okay, my warranties, I'm just going to see what else there is.
Now the sidebar of that conversation is that through that I found Amy Tenderich’s really amazing piece about this is this open letter to Steve Jobs that she was written about the state of technology and that launched my entire entree into the online world of diabetes, which is a whole other story, right? You know, going and finding out Okay, so what else is out there? And so I looked at some pumps that were available at the time this would have been on 2008 I looked at the Cosmo and the Animas ping was just coming to market and so I looked at these options and I started to bravely try something new and with every time you try something new, there's this anxiety about like, Oh, God, am I gonna like this thing? You know, I've had eight years As Medtronic paradigm pump in my, under my belt, and that was what I knew was something else going to be good.
[And from there, I like once you make the jump once you get a little bit more bold in like, Well, okay, I didn't die. I liked. I like things about this experience that I like things about my first experience. So again, what else is out there? And then I began to, to write up reviews of these things for other users to read, like many of us do now that I was one of the first bloggers to be writing about some of these products like I was on my blog that is now sort of frozen in time, but like so many bloggers, I would write it about, this is what I liked about it. This is what my expectations were, this is what I didn't like about it. I would reach out to the sales reps into the company is to be like, Well, I have a question about this. And so then as I began to review, more of these pumps, fast forward, maybe four or five years, then pump companies were reaching out to me to be like Like, Hey, will you try our thing and tell us what you think of it? Would you like to do a two week trial of it? Would you like to wear it for 30 days? And, you know, I was never in a position like some folks, I was never a paid spokesperson for a pump. I was not someone who was given free pump supplies for using the product or anything. But I did get experiences with these devices. And yeah, I've worn something like a dozen pumps from six companies over the years.
Stacey Simms 9:26
My story, which is really Benny's story about picking his pump way back when it's similar to yours in that I went to our care team and said, I have a two-year-old, we'd like an insulin pump. How do we choose? You know, what do we even do and at this point in 2007, as we knew there were a few more choices back then, which is kind of sad to think about, but I let our educator kind of guide us in terms of and I said I really did say this give me the idiot-proof one that works the best, right? I just need the one that a dummy can use and clip onto a two-year-old and that will also work well for him. We went and looked and held and touched everything and decided on the Animus 2020, which then became the Animus Ping. And we went from there. But we really leaned on our educator. And I'm glad in a way that I didn't have the amount of, I guess we'll call it anecdotal support that there is right now. Because if bring this question to a Facebook group. Let's face it, you're gonna get a lot of bands for certain brands. So if the question then becomes not which pump do I use? Because we all have our personal biases, but how do I choose? You already mentioned you had a change of insurance? You had a better situation than you'd had before? Let's start there. Let's talk about insurance. Because not every insurer covers everything.
Melissa Lee 10:44
Yeah, absolutely. And it's such an important point. And it's one that we as patients and particularly if you're in patient advocacy, like I have been, it can make you angry, but at the same time, you said something important. Every pump has its fan base, as well as its detractors. And I would say by enlarge, the fan base is huge compared to the number of detractors for every single pump product on the market. And what that means is that there's not a bad option. There are certainly options that might have, you know, a specific feature or style or bike fit in with your lifestyle better, but there's not a bad option. And I firmly believe that what that helps with is the if your insurance does not cover your first choice, it's important to note that the price differential between paying out of pocket for these really high touch high tech and expensive technologies, it is probably worth it for most people to consider that if my insurance will support my use of my second or third choice. I will be in a better position to be successful on this than if I have to pay out of pocket. For my first choice, and if you have the wherewithal financially to support your use of your first choice, and it's not on insurance then by all means, get your prescription for it and proceed. But I think that the majority of people fall into, I'm going to need support from an insurance payer to pay to support my use of this product. And that is not just the product, but also the supplies going forward. You know, if you have a situation where you have your first choice pump is maybe only available through your medical benefit through the durable medical equipment benefit, and you have a terrible plan that has only you know, 50% or less coverage of your durable medical equipment, then you might consider the choice that you could get through your pharmacy benefit because maybe for you on your insurance plan, your pharmacy benefit will cover 100% or 90%. And so, as much as we as particularly in the US value this I want to be able to choose my therapy, there's a reality of the cost I think it's really important to be able to say my insurance covers this pump, and this pump. And so I'm going to choose my best option from those.
Stacey Simms 13:09
And I would jump in and say 100% agree with that, that is worth a phone call for you. I know it's a pain. I mean, we all hate dealing with the insurance companies, but it really is worth calling and double checking this yourself. We love our reps. We love our healthcare teams, but I had boy Benny’s been on an insulin pump for 13 years and there was one time when everybody assured me it was okay. And it was not and if I had called myself and gone through those hoops which think I would have realized so it's worth calling that to double check as much of a pain that it is
Melissa Lee 13:42
well you know, and you bring up an important point because you say call myself call who you know many of us start with calling our insurance company and then we find out that they don't even do the representative you may be talking to from your insurance company covers deals with a lot of therapies and benefits and you say insulin pump and they may be actually looking at the wrong thing, or they may have the wrong information. If you have identified I want a product from company A call Company A, because Company A actually has every single company Dexcom, Medtronic, Tandem, Insulet. They all have people that are dedicated to what's called verification of benefits. And as soon as you give some information to these companies in terms of, here's who I am, you don't even necessarily need the prescription before they verify this, you can be doing that in parallel, because of course, you will need a prescription for whatever you choose. But they can be looking at your insurance plan. And they have experts on the inside who are able to look this up and say, Oh, well, actually, you could get it but we're going to have to order it from this other company that's closer to you because you have a thing that says you have to order within 50 miles of your zip code or Oh, we can get it but we can actually get it through the pharmacy channel. And so they can actually they have experts who do this and they have a vested interest in getting you on their product. So they're going to work really hard to find that out
Stacey Simms 15:00
I think back to my experience, right starting that insulin pump with Benny and I needed my care team so much. I know everybody has peer groups now and online support. But I needed a device that my care team knew how to operate. And while sometimes that limits you, I do think it's really important. I guess we can talk about the flip side of that. But let's start by talking about that question of what does my healthcare team have experience with why that important to you?
Melissa Lee 15:27
Well, and I do want to talk about the flip side of that as well, because I've challenged it several times. But on the one hand, your clinicians office is probably already set up with a representative for that, for that product they use, they probably already have the software installed for that product they use, they probably already understand how to both read and analyze the data that comes off of those devices, how to change the settings, how to troubleshoot with you, as well as how to also seek their own reimbursement for it because the time that They spend evaluating the data is actually part of their fee schedule. So I do think it can be a benefit to you both in getting you on the device faster getting you on boarded to the device more smoothly, because they already have a process in place, and they have a comfort level of supporting you with it.
The flip side is, I remember when I was living in North Texas and I had this amazing endocrinologist who would just let me run out and try whatever I wanted, and she'd absorb the cost of like, whatever new software she was going to have to install, she would let me be a guinea pig. What that also meant is that if I had a bad experience on something that soured her for the rest of, you know, her patient base. If I had a good experience, without overprescribed, I felt a lot of responsibility there. But at the same time, she said she would go to conferences, and she'd be sitting at a table with nine other clinicians, and nine of them had only heard of one insulin pump brand. And so by that same token, you if you're out here As a patient or a caregiver, and you're doing your own research on what your options are, you may have done the right research to find the right thing for you, and your insurance will cover it. And you know, you want it and you bring it to your caretaker or to your clinician, who says, Ah, you know, sorry, I'm an all XYZ shop. And you actually may need to advocate for Will you let me try it? What are your concerns about it?
And, you know, we see that especially, and Stacy, you've done so many podcasts about the DIY movement and do it yourself. You know, there are certainly clinicians who haven't heard of those options. And you may actually find yourself having to make a case for why you can be trusted to try this thing that they don't have experience with. And there also may be the case where they say, Listen, I can't absorb the liability of that or I can't buy the new software that would go with that. I remember, I was the first person in my clinicians office to try the insulin pump from isanti back when they were are around and my doctor's office had to buy a whole new piece of hardware to get the data off of my device. Like that's an expense that I'm asking my clinicians office to absorb for one patient out of thousands. So yes, find out what your clinician has familiarity with. They may have also anecdotal, good stories and bad stories about like, Oh, well, I had great success when so and so got on that, but also, it's okay. If they haven't, there are ways to convince them to consider allowing you to try this.
Stacey Simms 18:32
I wonder, too. I mean, right now, there's only unless I'm wrong. There's only three commercially available insulin pumps in the United States. Right. So three brands, okay. That is correct. So there's only three brands and we still hear about endocrinologist, and I think it's mostly adult endos. But we still hear some pediatric just anecdotally, who are, I'm only this guy. I'm only going to look at that stuff. And it can be hard I think for a parent of a young child or a young adult. Who's not used to advocating for themselves to say you? Well, I want this other one. I'm curious Lissa, someone who has advocated very well for herself. What do you do in those cases? I mean, I know what I would say. We're pretty outspoken people.
Melissa Lee 19:13
We are and many, many books have been written about sort of the paternalism of the medical community and how it can feel like what the doctor says goes and I don't want to challenge that I don't feel comfortable. When I'm like, half-naked with a paper gown sitting on butcher paper, do I really feel like fighting right now with somebody in a lab coat with a stethoscope and like a kid but there may be an increase to ask of you, in order to prove yourself to this clinician about this and in terms of Do you have blood sugar logs to give them Do you have CGM data to give them Can they see the data they would need to know that they can prescribe this product that is new to them and they would get insights Back to know whether they made a good choice for you. Do you have the kind of relationship with them or like, Listen, I'll schedule an extra phone call with you, I will prove, you know, I have this great literature I could send you and I've known people to sort of print off white papers and drag them into a, you know, a clinical paper, really, from a research journal and be like, Look, look, it's a valid option for my situation. And the same holds true for if you know, especially for parents who might want off label use, like maybe your child is below the indicated age, or there's some reason why, you know, same holds true if you're a person with type one and you want to take a drug that's indicated only for type two and how do you make that case often there is an ask of you that is, am I going to be able to give my glucose data and my maintenance and management visibility to this clinician so that they will prescribe this in a way that doesn't reflect poorly on them. And if they can feel like okay, I will have the information I need on this. And I would also say it's important to note that it's actually likely a minority of people with type one who were treated in these facilities where they even prescribed these products, right. So let's say you're treated by a general practitioner, and maybe they've heard of an insulin pump before, but maybe they don't even know what the brands are. And so you're going to need to be able to put something in front of them that allows them to feel confident in prescribing,
Stacey Simms 21:30
I was going to definitely talk about documentation, because we've already mentioned Facebook groups, I would not recommend the Facebook group printout to bring to your endo, that's not going to do it. And you laugh, but I know I know, sometimes that's the end. It's sometimes the best information. I mean, sometimes it's the worst information, but sometimes it's really good. But what I would recommend is, you know, find that diabetes forecast article that talks about all the pumps that are available, find the, you know, the diabetes minds to find the different comparisons that are out there, and I'll link up A few In this episode, you have to stay current on it because things are changing. But articles like that documentation. research articles, as you mentioned can be really helpful because then they have some meat. It's not just me going in and saying I heard about this cool thing. I want it for my son because it has a blah, blah, blah. You know, now I'm really backed up.
Melissa Lee 22:17
There are a couple of resources to use. Yes, absolutely. Like the diabetes forecast, diabetes, mind diatribe like where they've written about these products. But there's also a really cool, fairly new website that some behavioral health researchers out of Stanford like Cory hood, and the Helmsley Charitable Trust in New York City put together it's called diabetes wise.org. And you can go in and sort of say like, what am I looking for? What are my options? What's out there? How do I choose and so some of this is actually on diabetes wise, and I think they've done a really nice job. I think they plan to do more with it, but I really like what they have so far. And then as well, you can go each of the websites for instance, we said in the US it's Medtronic Tandem and Insulet each of those websites has a provider version of the website for your healthcare provider where they could go and get information as well. And you could give them that URL.
Stacey Simms 23:11
So let's start talking a little bit more about, you know, we were at this esoteric level and then just kind of dial it in a little bit more. Because, you know, the questions that I see the most are, you know, what would you recommend for an active three year old? You don't like there's no, I mean, that makes me laugh all the time. Because I don't know any three year old who's not super active and running around. So I always want to say what's the best pump for a chilled out? Relax three year old. Let's talk about type of pump. I always think that somebody should really think about how they will wear an insulin pump. And I do think you don't know until you do it, what you might like or what you don't like. But I mean, let's just talk about tubing for a moment because I personally feel and I've never worn insulin pumps. So I am a parent. I am not a person with diabetes. I feel like this seems to be much more of an issue than it actually is for most people, and that there are pros and cons of both, that most people don't think about at all. I mean, my son, gosh, was two years old when he started a tube pump bonkers kid, you know, super active, did tons of activities, and I would say probably got his tubing caught, you know, once in a while, just as much as his friend with a pod got his pod knocked off the first month that he was wearing it. But to me the tubing, I don't know, there's other things to think about. There's, you know, where on the body, you're gonna wear it, how much real estate it takes up, you know, that's why you have to kind of look at this stuff. And also, I'm getting in the weeds here, Melissa, but when you have a pump without tubing, right now, with the commercial availability, you need a separate controller. So these are all things to think about.
Melissa Lee 24:47
Such an important point I don't think people have ever I'll say honestly, I don't think people have ever believed me that tube versus no tube doesn't really matter. And what I will say is that That's a yes and. And to some people, it very much matters. And you know what, even if that is only in their perception of it, I absolutely grant that that is an important perception. What I will say is that there are what I often describe as, so I started I was on a tubed pump for nine years, then I was on a tubeless pump for three years. And I was on a tubed pump for two years that I was on a tubeless a year and like, so I've done both, right. And, you know, I think the folks at Insulet are fantastic, but I remember early on this is more than 10 years ago and me going to them and be like, Well, why is your pump great? And they're like it's tubeless and I'm like what else and they like it has no tube. You know, give me I'm okay with the tube. So give me another value props and now of course they have fantastic value propositions and they market that much better, but, you know, no dig on them. But the fact of the matter is, is that we wear glasses, wedding rings, wristwatches, smartwatches, earrings, there are many things we have To our bodies, that the first time you wear them, you're like, Okay, I'm so aware of this thing that I'm wearing. And then over time you feel naked without it, right? You know, you look down, you're like, I just I knew something was off, I'm not wearing my ring, or I'm not wearing my watch today. And a tube on an insulin pump is very much like that. And there are athletes in every sport, wearing every brand of pump available today. And so I don't believe that how active you are, should necessarily dictate whether you go tubed or tubeless route. I think that it's more about your perception of tubing and there is a real negative connotation about what it means to sort of, quote be hooked up to something like and so for if you are someone who can't like who that is a mental hurdle for your body awareness or for thinking about your child than great, you have a tubeless option, but what I would not ever say is that Having a tube is somehow limiting. Because like you say, there's the other side of that coin of, you know, if I'm wearing my tube pump, and I don't have my controller nearby, do I have access to do all the things I want to do? Or you know, the same thing, like just having the tubeless option make me feel like I'm freer or like, I don't have something attached to me, or does having the tube option make me feel like it's a lower profile, and I can tuck the thing away in my pocket. It's like, for many people, it's more about what your personal comfort level is. There is definitely not a huge difference in lifestyle, between a tube and a tubeless. And I think you and I are really aligned with that.
Stacey Simms 27:43
I would also add, we've said tubing and if you are listening and you have used the word or heard the word wire, instead of tubing, I do think it's an important difference, because to me, it's not a wire and wires are something completely different. And I do think that that's a really Interesting. I don't know how that started. I don't know if somebody's way back when I thought it was a wire, but it's a tube. It's a very thin plastic tube that if you're my son, you can swing your pump from Please don't do that. Why do you do that? You know, or it's it's but it's very thin, it doesn't conduct electricity. It's not a wire. So I just kind of want to get that out.
Melissa Lee 28:20
That that makes me think one of my favorite comedians Chelsea Reiss talks about he has a joke about the bedroom and getting a cot and a ceiling fan and having it swinging around. It's hilarious. I'll just leave that considering I don't know how general your user or your listener,
Stacey Simms 28:36
I appreciate that. I appreciate that. But
Melissa Lee 28:38
Yeah, so you know, there are things to think about many people when I was 20. And so my endocrinologist in the late 90s started pushing me to get a pump and I want to say that very clearly. I was pressured to get a pump. And he would say, well, all my type ones are on a pump. And I would say, Well, what does that do for me like That's good for you. Why do I have to fall in line? And for me, I thought it for about two years. And then I was in college and I met a girl with an insulin pump. And I suddenly found that I had this series of questions that I never would have asked my older male endocrinologist in his role. They were questions like, Well, how do you sleep with it? And what do you do with it when you're naked? And when you go to the bathroom? Like, do you have to move the tube out of the way? Like, how does that work? And do you lay on it? And does it hurt your back and like all of these questions that I needed to ask someone else who actually lived with it? So that's where I think our groups online things like Facebook and Instagram, where you can actually see what people's lifestyles are? and answer the question, you know, and short answers for everybody is you just deal with it. Like you just move it out of the way if you lay on it and it's uncomfortable, you roll over, you know, you toss it in the bed next to you, you unplug for a bit like there's lots of answers to lots of those questions but for me, but the important part was, I was being pressured to use one If I needed to speak to someone who knew what it was like to actually use it, and that was the trigger for me as soon as I met her, and I saw what her life was like, I was like, Oh, I can do this, this is no problem.
Stacey Simms 30:11
And we're going to get to the answer of I don't want to use a pump. And that that's okay. Let's talk about that. I'm gonna make a note. We'll talk about that quote towards the end of this, but to kind of flip around the tubing question. One of the other questions I think people need to address in terms of like, how they live or how they plan to use a pump, what they think about a pump is thinking about the remote bolusing and the remote operation of the insulin pump. Because I gotta say, Man, I missed that animus Ping. Now my son is 15. So I don't do as much with him. I mean, I never quote bolus him anymore. I mean, he does everything himself with our support. But there is something to having a toddler and not having to go over to them and take the pump out of the belt or out of the pocket and being able to just dose from across the room. Now I know and we should also talk about this, we should talk about future technology and processes and what's to come. But I think it's a really important thing to consider. Can you do it and be just fine? Yeah, Benny had a regular old pump that we had to touch from ages two to almost six, because that very first pump we had for four years was the animus 2020, no remote. So we bolused him in his car seat, and you know, in bed and did all that stuff. But when he was six, when we did get the remote meter, it was very freeing. And I have to say, I really liked having that. I'm glad we can, again, it's coming for the different pumps in the future. So I'm glad about that. But I think we do have to focus on what's available now. I thought we solicited an adult, I think of something like that. I mean, in terms of taking the pump out or wanting to remote bolus,
Melissa Lee 31:45
Yeah, that's huge. You know, when I was working for Bigfoot biomedical, we were doing some market research in social media where we asked people like where do you wear your pump and a lot of people reported I wear it clipped to my underwear, I wear it inside my skirt and wear it in a bra. And it was a significant population wasn't majority, but there are plenty of people who prefer to keep a device tucked away whether for their own personal discretion and their job, or maybe safety, you know, maybe they're likely to get tubing or a pod knocked out. And so I think that there were a lot of women for instance, who preferred who really liked the Animus ping and struggled with the decision to move up to the Animas vibe because the loss of that remote bolusing One of the things that I think is, you mentioned future technologies, and with full disclosure, I currently work for tide pool and tide pool is working on a product and development that would allow you to remotely bolus from your phone like so I need to fully disclose that that is literally what I work on for my day job. That you know, I think several things have happened both the Animus product and then which was commercially available, and then In many of these DIY solutions, and then of course Insulet Omnipod with the PDM, the personal diabetes manager that allows you to, to bolus, we've seen that there is a market need per se, as was we'd say in marketing, like there's a hunger for people to want to bolus with more discretion. And, you know, for those who aren't comfortable, let's deliver a dose of insulin at once, with this feature. And so these things are coming, you know, tandem diabetes just released an app that in future iterations they plan to include some degree of remote control. Insulet is of course iterating on their devices that allow for this, and Medtronic has put forward pipeline goals that they plan to get there and so and there are many products and development and products outside the US that allow for that remote bolusing like outside the US diableloop has that as well.
importantly though, and you said it, we have to base our decisions on what is available now and one of the things that I say With love in my heart for every sales rep I've ever worked for is never trust a sales rep. To tell you how soon something is coming. I remember so many adequate so many cases where people have been promised the next gen of whatever it is they use for going on 5,6,7 years. Oh, it's coming next spring, it's coming next spring. And the thing is, unless they can show you where they already submitted it for FDA review, it is more than a year away, right? And so and even then it might sit with the FDA for additional review for a longer period. And so unless there's a launch date, choose from what's available now. You can we get locked into this idea of like God, if I make a decision, I'm making this for the next four or even five years because of the warranty. Yes, you are, but you can't base it, on hope and dreams. You have to say if I'm getting one today, these are my options. And I can guarantee you that if there's a new option a month from now there will be at Upgrade pathway for you. But there is, you know, in many of these, all three of the companies that have stuff available today in the US have trade in options. And it might be, you know, you might not get the full value of the products with your trading, but I don't believe that you're stuck forever with the thing you chose. And we worry so much about buyer's remorse. Like if I get this thing, and then the thing I really wanted comes out in two months, I'm gonna be so miserable, and there's a pathway to get you to where you want to go. I believe that.
Stacey Simms 35:29
Another question I think people need to think about is, again, my perspective is as a parent, but it's what do I carry on a daily basis? You know, if I'm on multiple daily injections, or I'm using a particular insulin pump, what do I already schlep around with me and am I willing to carry more or do I want to carry less and I see this not as a good parent who makes her child take full diabetes stock with him everywhere he goes, but as the terrible parent that I am, that lets him run out of the house just with His Dexcom His pump and some hopefully Smarties or Skittles in his pocket, he would not want to have to carry extra stuff with him. Now, if he goes for an overnight or if he's gone for longer, he's got to take pump supplies, he’s got to take a backup insulin pen, he's got a whole kit. But just in terms of heading out for a little while, or, you know, being the 15-year old that he is he can get away with carrying less with the technology that he has. If you've got a teenage girl who perhaps takes a purse everywhere she goes anyway, that might not be an issue. But I do think it's kind of important to acknowledge that real-world kind of stuff, Melissa, that's one of the questions I urge parents to think about.
Melissa Lee 36:35
I'm smiling so big Stacey, I'm gonna put two hats on okay with my first hat. I work for a medical device software company and I'm writing the instructions for use for a future product and development. And I must say that it's very important to note that anytime you leave your place of residence you should take glucagon glucose tabs, a full meter kit, a backup, backup cartridge or reservoir pod. Some syringes, some insulin, your mother's maiden name like, Yes, I was really you should be prepared. And you know, I love blogger Scott Johnson talks about the caveman who lived and he talks about like, people with diabetes. We are the evolution of the caveman who lived the caveman who came out of the cave in the morning and said what do I need to do today to not die and we're really good, especially parents of kids with type one are so good about planning for the all those eventualities. Now I'm going to take that hat way off and toss it under the bed where it can't hear me and say that the reality is you or your child will find a way to screw this up. No matter what. You give me a pump that has batteries, I'll run them into the ground, you give me a pump that has rechargeable battery, I will forget to recharge it. I will lose the cable you give me a pump that needs to be thrown away at the end of three days and I will let it expire and then go six hours before I remember to change it. So trust in your teenager or your child to mess this up, it's fine, it's going to happen. There's no foolproof way to prepare for all of those individualities. At the same time, like you said, I feel confident leaving the house wearing only my pump and CGM, like I am, which I can look at on my phone. I choose not to carry a meter and a land set and strips and additional insulin. But I mean, I'm sure Benny has stories like this as well, that you know, there have been cases where that bites me, right. And one of my you know, I do music video parodies and one of the ones I did was about being at the office and running out of insulin and not being able to eat lunch until I go home and take care of it like these things happen. And you can just like with diabetes today, you can choose to leave your supplies at home and absorb whatever risk comes along with that. But the nice thing is, is that Yeah, you can wear your pump and leave your home and It continues to just pump along, pump right along with insulin.
Stacey Simms 39:03
But you made a great point, it doesn't matter what brand of pump or type of pump you decide on, you are going to mess it up. And you're going to have situations where it gets a little hairy and nine times out of 10 you're gonna just MacGyver something and be fine, regardless of pump type.
Melissa Lee 39:19
Yeah, you know, for me, I had a situation, you know, I mentioned I was 20 when I started on an insulin pump. And just to give you an idea of what I understood about diabetes as a very bright top of my class, 20 year old I'm just gonna say I was it wasn't completely brain dead. I was brand new to a pump. And I actually, I had, you know, as a musician, I had several gigs booked one after the other at this church where I was going to be singing for the day, and I arrived at 7am and booked until one o'clock, and I looked down and my pumps out of insulin. And I think to myself with my 20 year old brain and my knowledge of diabetes, I thought it should be fine because I used to go hours Between injections. And what I didn't understand was the difference between how a pump delivers insulin and how my long acting insulin that I had taken at the time would have had this undercurrent of coverage for me. And so I get sicker and sicker as the day proceeds. And by about 12:15 I'm standing up in front of, you know, maybe 800 people, and I just collapsed. Just done. My blood sugar was super high, I was out of energy. I was dehydrated, just, I just decided to lay down behind the pipe organ and you just see my feet sticking out the end like I'm the Wicked Witch of the East under the house, right. And, um, you know, the organist pops up off the bench and start singing the Gloria to the congregation of Catholic parishioners and, well, you know, I learned an important lesson that day Stacy. That you know, the fact of the matter is, is that we are going to make mistakes, especially your kids and I am fortunate that I you know, I was not in DC I did not end up at the hospital, and they will learn these things as we go. And as those frontal cortexes start to develop, those things will actually be able to be applicable to how they manage their diabetes.
And I think some people and this is an important point to make about, if you're new to pumps, some people are really afraid. Like, what if it fails? Yeah, it's another device like sometimes my phone doesn't power up like I want to sometimes my household robots don't respond when I say their wake word or whatever. And like, yes, it is another device. And that is why in here and putting my industries hat on, that's why they take a long time to get to market because so many fail-safes are put in so many considerations are made about what the risks to the users are. And that's why you carry backup supplies and that's why you have a backup solutions but at the same time, pumps can provide a lot of benefits for being able to kind of tweak your own care. You know, one of the things I often say in these presentations that I Do on technology is, if you are a pumper, you're actually in the minority of people with diabetes. And even with type one, even insulin users, you're in the minority. And so if you choose not to do it, you're choosing the standard of care, the standard of care is that it's perfectly appropriate. I spent my first 10 years with type one on injections. And that's a perfectly fine way to choose to do it. A pump affords you different options. And for me at age 20, the thing that a pump did most for me, was allowed me to, like choose not to finish a meal or to have seconds or to order dessert after the fact or to graze at a buffet like for me, it was about like, it was just less hassle at meals, and that's how it sort of started. And I liked that and I didn't mind the body image perceptions that it might change. It was that was not an issue for me. But for others it really might be.
Stacey Simms 42:57
I think a good reminder to about pumping is it's nothing surgically implanted. So if you change your mind, it is an expensive brick, you did use your insurance, you did go through a lot. But if you're six months or a year in and it's not what you want, and you prefer multiple daily injections, you can take it off, you can take a pump break, you can do what you've done, perhaps and tried different models, if you can figure out a way either way ensures we were able to switch once for medical necessity, we were able to talk to an endocrinologist and my son was using enormous amounts of insulin. I've talked about this, you know, just what he loves when I talked about puberty when he started into puberty, but he really did use a lot of insulin and the Animus didn't hold enough. And we were able to get coverage to switch to a different pump that held more so you're not always locked in but you're definitely not locked into not going back to shots. And I think that you know that just to make the point that it's okay and shot technology is improving every year. Absolutely. I think it's worth looking at to.
Melissa Lee 43:57
You bring up another important point like we and you said this early on with when you were in your buyers process your customer journey with Benny's first pump. Like, if you have not held that pump in your hand and pressed the buttons, then please do not buy that pump. There are representatives in your area that can meet with you from any of these companies, your CDE, your endocrinologist, somebody has a pump in a drawer somewhere. And you need to know what it's actually like to operate it. You know, for me, and this is a weird thing. And I've never met anybody else who felt this way. But for me, when I was first looking at the animus ping, there was something about the refresh rate of the screen that bothered my eyes. And like that's not something I would have known for their product literature. And I was just like, yeah, you know, it's I don't know, it's weird. I don't, there's something I didn't like about it.
Stacey Simms 44:43
Melissa Lee 44:44
But like if I had never pressed the buttons on it, I wouldn't have known. There are pumps that there are people who prefer a color screen or a lighted screen or a screen that's more visible in sunlight. You know, there's just so many things that until you've held the pump played with it. It's, it's like driving a car without a test drive. And this is a big commitment you're making. And I think it's perfectly appropriate to demand that you get that pump in your hand before you order it sight unseen.
Stacey Simms 45:12
We're getting long here, but I don't wanna let you go without asking. You had two points that I think really are wonderful. And that is the question to ask yourself, What do I love about technology you're currently using? and What don't you like about what you're using? Can you kind of touch on how to ask yourself those questions? Oh, absolutely. You know, a lot of people. And I think this is fair to assume when you see people out there, and maybe they're bloggers or influencers, or you've heard their name before something and you assume that they're out there, and they're being paid to promote the thing that they wear and I am not that and I have no problem with that. Like I believe companies should actually seek spokespeople who live their lives with the product and can speak to the experiences they're having. What I am, is a person who has used many of these products and I like to sort of break them apart and say these are the good things and these are the bad things and they all have good things or bad things about them. They've all nailed some features and failed some other ones. And so people approach me and they're like, what pump should I get? And they think I'm going to say you should get the pump I have. And I rarely say that and said, I say, Well, what are you looking for in a pump? What do you love about the thing you use now? And often like if you told me that what you loved about the product you're using now and it was the Animus ping and you're like, I love that I can bolus him when he's under the covers and I don't have to pull this pump out then I would say well then here are your options for that. Like there are DIY things where you can do that there's the Omnipod where you can do that and like those are the things you should go look at. And if you told me what you loved about it was what I really liked the security of a tubed pump because the way he's been able to use it and I like the color screen then I would say oh, you should definitely go look at tandem’s TSlim line because they have those things and so you know, depending on what you like about the thing that you use, look for that feature, specifically In your next thing because you're going to miss it terribly whatever that feature is that you love. And then the same thing. What do you hate about your current system? Like, are there too many lines on the screen? When you scroll through it? Do you hate all the confirmation screens that you have to go through? Do you hate the CGM that it pairs with? Like, what is it that you hate? Okay, we'll look for one of the pumps that actually resolves that and talk to people and find out whether that specific thing that you hate about it resolves it because if I go into a Facebook group, and ask 3000 people what pump should I get? Everybody's gonna say, you should get my pump and then a few people are gonna say, Oh, God, don't get the pump I got I hate it without thinking about what your individual situation is. And so I think it's more a case of we don't know what questions to ask ourselves. And so we just ask it broadly, and the questions are, what am I looking for? What am I looking to resolve? With what currently bugs me? You know, I had a friend reach out to me once and she said, you know, my child uses the Omnipod. And he's having lots of site infections with the canulas. So site changes, he was a very young child site changes have been horrible. And I was thinking about getting this other pump. And I said, Well, tell me about that more. And as she explained it, she was like, well, I thought if I got a pump that didn't have a hardcoded expiration at this 72 or 80-hour mark, that I could leave a site in for longer and go more days in between site changes so that it wasn't so anxiety-inducing for him. And I was like, okay, you just told me your child's having a lot of site infections, leaving a Canula in longer to go longer in between is actually not what you're looking for. Maybe you should stay on what you have. And it would be fine if she went the other direction, but it was what exactly are you trying to solve by changing?
Stacey Simms 48:53
Yeah, when we were looking for a pump, I knew what we were trying to do. Because Benny was fine with shots. I mean, the first two weeks, were called But after that he as long as we didn't stop him from playing or eating, he would like stick his leg out or close arm out. He didn't care at all. And he's ambidextrous, which we learned at this time. So he really didn't care. He was getting like eight shots a day we were on our endo had us on a routine where he could eat whatever he wants, and we just, you know, we bolused after and it was a routine that worked really well for us for six months. But I wanted an insulin pump because he was getting such teeny tiny doses that we were not even close. You cannot measure with your eye, a quarter unit of insulin in a syringe, at least I couldn't. And we were really struggling with big, you know, swings because of the dosing. And working with our endo, they recommended an insulin pump for the flexibility and precision. And that made sense to me. And boy, did it make a big change when we were able to really dial in a quarter of a unit of insulin as a dose for my little guy who's now almost six feet tall. But if you can't answer that question, right, why do you want to get an insulin pump if the answer is because everybody else has one, put it in a drawer, think about it later come back when you really have a need. And I'd also say, Melissa, and this especially for parents is if your child is old enough and old enough means different things to different people, they really have to help decide if not totally decide.
Melissa Lee 50:17
Absolutely, it just absolutely. And I would say, if your child is old enough to talk, they're old enough to have a say in this. And I have two children. So I know how early that starts to happen. But so my children don't have diabetes, and they do take medication for another condition. And the fact that they take medication like that is a constant conversation I have with them about the why and how do you feel about it? And the Do you feel like it's helping you and in these conversations that I think that we are, particularly as parents, we're so quick to want to solve things for our kids. We're like, oh, there's a technology out there and it's better than shots. So I'm gonna put this on them and Your children will do best on a therapy to which you have their buy-in. Like, if you really like that pump a has feature x and feature x is not important to them because feature y on this other pump is so much more like okay, that pump comes in pink and that's what I care about. Like Yeah, the pump that comes in pink, then honor that because again, they're all good options.
Stacey Simms 51:27
That's exactly that's a great point. It comes in pink,
Melissa Lee 51:31
But you know none of them do anymore to like now you have to get like a rubber skin right? Think about it Tandem 670 g like, there was a time you know, 10 years ago, every pump company had five or six colors that would come in and better believe I hate that. I can say that. You better believe that mattered to me. It's like oh, you know, I like purple but I don't like their purple.
Stacey Simms 51:53
But it's important because it is not just something that sort of this way it's important because think about how much stuff we do with our phones, right? We all decorate and put skins and screenshots and pop sockets. It's the same thing with an insulin pump. You know, some people don't care at all. But some people, if I were insulin pump, I would have different things for every day of the week. I mean, I get it. And my son used to care a lot more, we had different skins and he had pink and he had purple and camo. And now like I said, he just got makes me crazy just shoves in this pocket. So let's go from one, one kind of extreme, which is might, you know, pink to another. We mentioned earlier, don't buy anything, don't make decisions on future promises. But I do think it's important to listen to talk about the most recent stuff, and by the time this comes out, something else might have been improved, who knows. But the software, the inner workings of these pumps is changing. And thankfully, it's changing at a pace that we hadn't seen in the previous 10 years. And I think it makes it almost more difficult to figure out what to get right because somebody might really want a tubeless pump, but then they see that and I you know I am guilty of this too talking about how much I Love control IQ, which is only with the Tandem right now. And there's DIY stuff, which, you know, I'm very vocal about this. I love all the DIY people, but we have never used a DIY system. It's not something I'm comfortable with. So what's your advice for people who are just kind of intimidated or thinking about the different software systems now?
Melissa Lee 53:18
Sure. It's such an important question, I think. So it's only been and it's funny to those of us who are in the thick of this, especially myself, I've been in industry now for four years. It five years it's been a while there is this. We're in the very, very infancy stages of automation of insulin dosing. And so for years, this was a promise we were going to get there commercially. And now we have two systems commercially available. We have a third system, the one from Insulet, coming just out of clinical trials, so we can expect that we'll probably see it go to FDA in the near term. So there is this now it's not just get a pump. And a pump is a different way to take insulin, which that was my standard line for many, many years. It's just a different way to take insulin. It’s an electronic syringe. To now it's actually dosing you for you. It's actually it has some degree of intelligence, that is changing your doses, without your say, right. And so now it's like, well, now there's this whole, like, Is it a quality of life upgrade if I get this product? Or now what if I, I don't understand how to read like this algorithm? First of all, what does algorithm mean? And this one has an algorithm that does this, and this one has an algorithm that does this, and I don't know like, it could be green could be purple. I don't know how to, like, I don't know, I don't care, too, which I will say, as someone who has had to write extensive documents about these algorithms and such. I will quote my dear friend, Lane Despereaux, who says all these algorithms work. They're all the same. It's I mean, they're not, but they are. They all work. If it's coming to market, it's been deemed safe to use. And you have, there are tiny, tiny details where if you are the person who cares about those incremental details, you probably are the person who actually understands those incremental details like, you know, how will it drive me to a target glucose? And how do they do it differently from one another. And the fact of the matter is, they both do it. And so the goal of any of these systems is to try to keep you at a glucose level that's safe for you. And they do them differently. But they all do it. They're all fine. And if you are trying to get into the nitty gritty, you're going to hear people's success stories and you're going to hear people's horror stories, but they don't live your life. And there is no one out there who is the exact like copy of who you are with your situation and your child's situation, to know whether or not the experience they have is experience. You're going to have And to that end, you know, your, your doctor may have some information on these, do you really want to go through and read the clinical trial data? Would you understand it? If you did? And what would you actually extract from that that was important to you? And this is one of the things that I see in the sort of, you know, and I love my DIY brother in like, that's a cut my teeth in DIY in many ways, and but like if we're just going to slice up people's algorithms to try to decide which one's going to get you to a 6.5 instead of a 6.6. A1C, like, Is that what you care about? If that is what you care about? Go forth and slice, slice those algorithms read those white papers, that's fine. But what do you actually care about? And when you ask that of people, they're often going to tell you, I care about whether I can think about it less. Right. Okay, so what details about this system are going to tell you whether anything about that lesson or not. And it may be well, you know, my sister's kid has one and she really likes it. Okay, so great. Does your insurance cover it? Go forth? Yep. And that, if I'm trying to choose between a, like a Toyota rav4 and a Honda CRV, like I can get down into the nuts and bolts of the horsepower. And I'm gonna say a lot of words, I don't understand, you're gonna notice I'm maybe, like, what is the torque? I don't even know what torque is. But you know what I mean? Like right? If you're the type of person that cares about that, then great. Do you need to care about that for your insulin pump system? Or just really like the red one?
Stacey Simms 57:29
Like, there's also and there are a lot of people who will choose between those two vehicles on what's the safety rating and how close we live to the dealership? Yeah, right. You know, there's all sorts of different ways to choose these things, knowing that they all work really well. And then you're just talking I think a car is a great analogy.
Melissa Lee 57:45
It is, well you know, you either want that middle row seat or you want the extra cupholders. So which one is most important to you? sign the form and send it away and then don't freak out that you made the wrong decision because all decisions can be unmade. You can always go back to the thing you were doing before, you can always find a way out. And I say that even acknowledging the privilege that I have. And I do want to make that clear, like I have a privilege to be able to afford a different pump. If I, if I really wanted one and whined enough to my husband, he would be like, fine, fine. But the same thing is just like with a car. Okay, so you may have to drive it for a while. It's not the right thing. You can't Well, I can't say you can sell it because it's a prescription medical device. But you know, there are ways through this. And I think we get really caught up on whether or not we're making the right decision. And it may just be that there is not a wrong decision. And whatever you make is likely the right decision for you.
Stacey Simms 58:43
Melissa, thank you so much. We could definitely talk for another hour about this, but I think we've covered at least the first go-round as best we can. But I really appreciate you spending so much time with me. Thank you. It's
Melissa Lee 58:54
always lovely to talk to you, Stacy. And I hope that this can help people. At least take a breath And they'll still post but yeah, but should I get that and that's fine, that's fine. It's okay to ask.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 59:20
I'm so sad to know there aren't pink pumps anymore. I didn't even think about that. It was so important when Benny was little I mean he wanted the blue pump but then we got a bunch of skins and covers that he could change it to whatever he wanted to and Animus had great colors right that was part of their marketing all those that rainbow color scheme of different pumps. Oh my goodness, I guess it you know, you can bring out whatever you want. Any option of pump can be blown out. That's, that's not really what I was going for. Any option of pump on the market right now can be decorated any way you want. Please go ahead and share this episode. Yes, it was a long interview, but there is a transcript. And I do think this is a really important topic. That gets kind of skimmed over when people say, just this pump, or just that pump, or I love this one, or I hate that one, or should I even get a pump, and that bonus episode is coming with those true believers. Those super fans who do love the pumps that they use Diabetes Connections is brought to you by Dexcom. And it is hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it helps us talk less about diabetes. It really is so wonderful. It's so great about sharing follow as a caregiver, a parent, a spouse, you know, a friend, whatever, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow a separate follow app is required. learn more, go to Diabetes connections.com and click on the Dexcom logo.
I mentioned Friends for Life at the beginning of the show, I need to let you know and I've put this in a Facebook group and elsewhere on social media but just so you know, I'm doing a special promo code for the world's worst diabetes mom for my book, if you order it from my website from Diabetes connections.com, use the promo code ffl2020. And you're going to see $4 off the cover price. This is a pretty big discount. I don't think I've done a discount like this. Since we launched the book last summer at Friends for Life. We did a pre-sale a couple of months before the book came out. And this is a big one. So it's $4 off promo code is f f l 2020. Of course, it's always available at Amazon and Barnes and Noble and target. There's an E-book and the paperback book and the audiobook. That's all over the place. But I wanted to make sure to let you know about the discount and the promo code for Friends for Life. All right, bonus episode coming in just a couple of days on those true believers in the pumps that they love and then back to our regular Tuesday drop if all goes well, I'm Stacey Simms. Until then be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.
What's it like to live with a pancreas transplant? And why would you need one? Brandon Mouw was diagnosed with type 1 as a child and lived well with it for many years. He explains what happened to change that, what led to the transplant and how he's doing now, a year and half later.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Get the App and listen to Diabetes Connections wherever you go!
Transcription coming soon!
Meet two people with diabetes making a difference in very different ways. We're talking to dietitian and strength coach Ben Tzeell & teen author Morgan Panzirer. First, if you've sort of fallen off the nutrition and exercise wagon in the last few months, you’re not alone. But getting back in the game doesn’t mean going to extremes. Ben has advice about starting small and making changes that stick. Morgan was diagnosed with T1D at age 6. She's now 19 and just wrote a book about her life – so far – with diabetes. It's called Actually I Can.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
This week, I talked to two people with type one making a difference in very different ways. First, if you've sort of fallen off the nutrition exercise wagon in the last few months, you're not alone. But getting back in the game doesn't mean going to extremes.
Ben Tzeel 0:37
Life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy, and now you're feeling deprived when you see all your friends eating these other things.
Stacey Simms 0:47
That's dietician and strength coach Ben Tzeel. He's got more advice about starting small and making changes that stick in Tell me something good. I'm talking to Morgan Panzirer diagnosed at age six. She's now 19 and just wrote a book about her life so far with diabetes.
Morgan Panzirer 1:05
And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine as long as I don't need a shot.
Stacey Simms 1:15
The book is called, actually I can, and after talking to Morgan, I can tell you better believe she can.
Welcome to another week of Diabetes Connections. I am so glad to have you along. Welcome if you're brand new, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned two. He is now 15 and a half. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting. And that is how you get the podcast.
I have been so busy the last week mostly because for whatever reason, sometimes podcast interviews seem to come in clumps. So I had a lot of interviews to do and a lot of production I take care of a lot of it before I send it over to my editor who I've mentioned before, but also I've been busy with my Friends for Life presentation, Friends for Life is the biggest family conference all about diabetes in the US, possibly the world. And instead of having an in person conference this year, like everybody else, they're having a virtual conference. And so I decided, and boy, I thought this was a good idea that I would do my usual game show I usually do a game show presentation as one of my talks for them. But I would do Hollywood Squares because boy zoom just lends itself to Hollywood Squares, doesn't it? That's what I at least what I think of and I gotta tell you, I'm thrilled with how it came out. But I also got to tell you, I'm not sure I'll ever do it again.
We had to get eight people I was the ninth you need like a tic tac toe board right for for the Hollywood Squares. The FFL-Wood squares excuse me, that's Friends for Life, FFL. So FFL-Wood squares and I decided to go big and I got people from all over the world, different time zones. Day here night here. Early morning here, it was amazing. So huge credit to my cast of characters. Thank you to the contestants. I cannot wait to share it with you. The conference itself is mid month. If you've signed up for that you'll see it then. And then we'll drop it as a video in a podcast episode. Shortly after that. That's one of the really fun things that I get to do, right. I mean, you have an idea you get to try it. You see if it's a disaster, you see if it's fun, but you know, it's it's never boring, that's for sure.
Okay, interviews coming up in just a moment with Ben Tzeel and Morgan Panzirer, but first Diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door every One Drop plan. Also in access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.
Unusual show this week and that I have two guests two separate interviews. And if you're here only for one or the other, that is fine. I can tell you that Morgan's interview starts about 22 minutes from now, so you won't hurt my feelings if you skip ahead. But I really think you'll like my first guest, Ben Tzeel. we first talked to him last year. He's a dietician, he's a strength coach. And Ben says eating and living with diabetes should not be boring or feel like punishment. We had a fun conversation about what that really means good intentions about eating well, and exercising and quarantine and more. Here's my talk with Ben Tzeel.
Hey, Ben, it's good to talk to you again. Thanks for coming on.
Ben Tzeel 4:53
I'm just so thankful to be here. And it's so awesome. It's just amazing. Thank you.
Stacey Simms 4:58
You're really well. We'll see about But
Ben Tzeel 5:02
it's human. It's human interaction right now we don't have much of that these days do it.
Stacey Simms 5:06
Well, let's start talking about that. I mean, how have you been living since the stay at home orders? What's your life been like?
Ben Tzeel 5:13
I just don't go anywhere. I've been living in Florida, not nothing against Florida, but I feel like the cases go down and then the cases go up. And that's just what you hear about everywhere. And I just figure it's just not something I'd rather really want to deal with if that makes any sense. Do you live alone? I actually live with my girlfriend and fortunately for me, she's willing to do a lot of the grocery shopping and a lot of the day to day stuff at the pharmacy but honestly, we just don't go anywhere because she works in the ICU as a pharmacist and she sees all this stuff firsthand. Wow.
Stacey Simms 5:44
That's gonna be interesting job to have right now.
Unknown Speaker 5:47
Stacey Simms 5:49
Assuming that you've been doing this since mid March, yo, how's your health? How are you keeping up because you're pretty intense person when it comes to fitness?
Ben Tzeel 5:58
Yeah, I definitely like to thanks. So it's something where I've had to get creative. I've had to step outside of my comfort zone and really look at what I have and say, Okay, what can I do with what I currently have? And slowly, you can assemble a little mini gym at home and things like that. But I've really, really taken time and effort to focus on what can I do instead of, well, this is out of my control, I guess my fitness is gonna go away. I guess all of my other habits that I've worked so hard to develop are gonna just fall by the wayside?
Stacey Simms 6:26
Well, I think for some of us, those things, the second part, those things have happened, right? Because it is hard to maintain a routine It is hard to, you know, especially when, and I'm gonna get personal here for people like me, you know, you're a strength and conditioning coach, you know, this is what you do. I'm a suburban mom who walks her dog and goes to the gym a couple of days a week. And it's been really easy for me to fall out of those good habits over the last couple of months. You know, do you have any advice? If people are listening and thinking, Well, I haven't kept up so it's too late now.
Ben Tzeel 6:56
Well, it's first one of those things is to your point where you mentioned It's too late. Now, it's never too late to actually start and say, I'm gonna look back and say, This is what I did before, this is what I was doing. And maybe I won't be at that same point right now, because I have let myself fall off because I have fallen out of this routine. But what is something I can do today that small to just build a little bit of momentum. And as you build that you take another baby step, another baby step, and suddenly, you're taking strides to get back to where you were. So if you start from that mindset, and that point, just make that tiny little shift, you end up in a situation where suddenly three, four weeks from now, you're thinking, wow, I'm already almost back to where I was. Because your muscle does have a memory, it is going to remember where you were. And as long as you put in those same habits you previously had, you should be totally fine.
Stacey Simms 7:45
It's funny when you talk about, you know, getting back into routine because I think at the beginning of this, I don't know if this happened to you, me and my daughter, and I think a lot of people and my daughter came home from college, and we said All right, we're going to do yoga on YouTube. We're going to walk the dog like five miles every day, and we're gonna get really, you know, in great shape, we have a stationary bike, and we're going to do all these bikes and all these rides and, and we really haven't done much of it at all after those first couple of weeks, and I've seen some really funny parody videos on that and a lot of people who have felt this way, but I want to flip that around and say you have taken as you said, You've gotten creative in your house, can you tell us a little bit of some of the things you've done to make your your home gym, I'm assuming that you didn't run out and buy a whole bunch of, you know, gym radio equipment?
Ben Tzeel 8:29
No, I was fortunate that I my parents don't live too far away. And I had a bunch of dumbbells and a bunch of things from my youth that I was able to pick up. But beyond that, I mean, I was pretty much in the same situation that everybody else was where I had a few resistance bands and a few dumbbells and a few little things and had to start realizing. All right, well, I want to keep my insulin sensitivity good. I want to stay on this track of that I've been working so hard to be on what can I do. And so maybe that requires you sitting down and saying Alright, I'm going to restructure my workouts, I'm going to tell myself maybe I was doing four days a week before an upper body and lower body, you can still do that. But you may have to adapt. Instead of using a cable, you may have to use a band instead of using like a barbell or instead of using a heavier weight, you might have to go more reps at a lighter weight, or incorporate pauses or incorporate other bodyweight movements that can be just as challenging. And honestly, the first few weeks of the quarantine, stay at home, whatever you want to call it. I actually felt like I was more sore than when I was in the gym because I had to push harder.
Stacey Simms 9:34
You've mentioned your blood sugar several times you've lived with type one you were diagnosed when you were a kid. I've heard two schools of thought here over the last couple of months. One is you know, my blood sugar's are all over the place. I'm stressed out I'm so worried and you know, things are crazy. And then the other side of the coin is my blood sugar's have never been steadier. You know, I'm not going anywhere. I'm not eating restaurant food, where do you fall in on that?
Ben Tzeel 9:56
I would probably fall. That's it. I mean, I'll Honestly, it's a good question because I see it a lot from the first perspective. So I feel like I then kind of translate that to me. But it's actually my numbers have been in better control since this all began. Because there haven't been as many extraneous factors. I'm not going places. There's lots of unknown variables introduced. But I just I feel for a lot of the people that are in the first situation because there is that lack of routine and that lack of structure. And while everybody says, Oh, I, I wish I could be home more, I wish I didn't go to my job. Taking that structure out of the picture can really make it difficult to stick to that exercise program really stick to the food and the nutrition that's been making you feel good with good blood sugars, and you ultimately fall off that path. And when you do your blood sugar's kind of take over everything else. And during a time where there are no sports, there's not lots of distractions, there's no big gatherings, there's no concerts, your blood sugar's can literally become the one thing that you hone in on and focus on way too hard.
Stacey Simms 10:55
That's funny because I thought you were gonna say there at the end that you can really you can focus on And really make a great difference. But you said you focus on and you know, it can it can not be a great thing. Can you expand on that last thought?
Ben Tzeel 11:08
Sure. And I mean, of course, I can tell you it, there's ways to get around it. But a lot of people what will happen is, I mean, think about it like because there aren't tons of social things to be doing. And there's not tons of activities and tons of distractions, you start to look at the few distractions you have in your life. And one of them would be, I wouldn't call diabetes, a distraction, but it's one of the big prominent parts of your life if you have it. And it just starts to become a bigger and bigger and bigger thing that you just the more you focus on it, the more it expands and the bigger role it can take in your life. So I've watched a lot of people people I've worked with people I've interacted with on social media, that they end up in a situation where their blood sugar's just take over their entire existence where they're looking at their decks calm every five minutes, wondering what's going to happen and sometimes that leads to great results, but other times, it just drives people crazy. He drives up their stress level and they get into this loop of frustration. Oh, my blood sugar's high. Oh, I'm a failure and they go down the spiral that is very counterproductive in terms of living like a really as free of a life as possible to do right now.
Stacey Simms 12:14
Yeah, I would also echo that for parents as you were listening. I think it's super easy. And I found myself doing this too, with Benny home a lot more. It's easy to focus on our kids blood sugar's more, right? They're not going anywhere. They're not go to the movies, they're not hanging out with friends. And it's easier to make that a bigger focus than it needs to be. So I'm kind of listening to this and taking it to heart. But you know, one of the things you're really known for in social media is these these crazy foods, right? We talked about this last time when you were on, you know, giant donut, big meals and stuff. And I'm curious if there's, you know, we often figure especially newly diagnosed, we often find out that we love restaurant food because it's full of hidden fats and sugars and you know, salt and butter and all those delicious things that We love and that's what makes restaurant food so good. But it's kind of hard to bolus for that stuff. Are you finding it easier? I mean anything on that in terms of home cooking, which I'm so sick of Ben, I am so tired of cooking. And my husband helps if he cooks too, so I'm just sick of it.
Ben Tzeel 13:13
Well, I can't blame you for being sick of home cooking because it gets to a point where I'm probably three months or so from having had something from the outside. And it's I'm just craving something
Stacey Simms 13:26
brought in a meal. You haven't brought anything in.
Ben Tzeel 13:28
I just maybe I'm paranoid, but I just I just would rather be like, you know what, at least I know, I'm dealing with the prep and I'm dealing with everything else. And when this starts to settle down, then I'll start to venture out and have all of the fun food again. Not that I haven't had fun. Trust me. You can make many fun things at your house. I know what you're making.
Stacey Simms 13:45
Yeah, no, I have friends who haven't brought any food in. I mean, we're not in that camp, obviously. But I know a few people who've done that
Ben Tzeel 13:51
Emilio wants me to really bad so we're working on it. We're in a negotiation right now. But to your point, I would say when you know All of the factors within what you're eating. So of course, you know that you've prepped it, you know, what you've put into it, you know, everything and everything. And there's no variables, there's no question marks. And we're not talking about the COVID part, but just about the actual composition of the food itself, then it's a lot easier to bolus for because you have all the answers. You have all the math right there when someone else creates something, even if it's something that, you know, Oh, I know, this is a bacon double cheeseburger, and I know I've had them before. And this is what happens. There's some sort of variability because that part of it is out of your control. And that lack of control can be difficult to account for granted. There's ways to take it in to consideration and be able to say, all right, this is what I'm going to do based on experience based on other knowledge, like put numbers and experience together and make a very educated decision and dose and do amazing with it. But just that little factor of there's other stuff in here there is that hidden fat you were describing. There's sometimes things are cooked in, in oils we don't know about there's sugar that might got thrown in there that you don't know. And then you end up eating some foods like that and you get frustrated you you have chicken alfredo and your blood sugar goes up to 320 for the next seven hours, no matter what you do no matter what you dose and you're just full of frustration the whole time.
Stacey Simms 15:14
So you work with a lot of people with type one and your background is nutrition. You have a master's degree, you're registered dietitian. I'm curious what the first change you urge people to make when they come to I know not everybody's the same. But you know, one of the questions maybe that you ask,
Ben Tzeel 15:30
I guess, coming from me, the first things I want to know is where people are starting out right now. Like, what are you eating? and kind of just getting you aware of what are you eating because as evidenced during this time, and this time, please put a magnifying glass on it more than anything else. But people kind of just go through the motions. They don't pay as much attention to, oh, I'm eating X, Y and Z. They just say oh, I'm gonna make whatever I can grab and I'm just gonna go for it and eat and then continue and a lot of people can't tell you what they ate for lunch yesterday. So my first goal is get them really aware, what are you eating? Start to kind of get a sense of it and then get them understanding. Are you making the meals complete? Are you getting your proteins, your fiber, your veggies? Are you getting them to the point where you're getting the nutrients that you need for both the body composition that you want, but also for the blood sugar control, because once you have the blood sugars and control, the body comes a lot faster, whether you want to lose weight or get strong. And once the blood sugars are controlled, you can do all the things in life that you really want to be doing.
Stacey Simms 16:30
I'm always worried about talking about diets, right? Because people want to lose weight, they go on a diet, people try all sorts of different things. We've talked about this in the past to me low carb, high carb, whatever it is, what do you find works overall, in general, for the people that you work with.
Ben Tzeel 16:45
For the people that I work with. I've had people on 400 grams of carbs, I've had people on 40 grams of carbs. The most important factors that I've noticed are getting enough protein into your life and I know a lot of people are concerned Oh protein is going to Your kidneys. But all the research, if you dig into it has shown that a higher protein diet is actually advantageous to the kidneys. I'm not saying you need to eat like five chickens a day, but at the same time, a substantial amount of protein. I would also say making sure you do get the fiber. That's why I tried to hit on those big three the protein, the fiber than the veggies, the fiber is going to be important whether you get that from veggies and fruit or whether you do get that from some grains. Some people do well on a decent amount of carbs. Again, it's that carb side of it is preference and everyone in diabetes is so fixated on it, when I can't stress enough where people that I've worked with are super successful on all levels of carbs, but having the protein, having the fiber, having enough of the veggies, those three things and then the other thing would be the 9010 rule. And that would be something where I would I don't know if it's actually a rule I may have made it up but it's 90% of the time you're eating on point you know what you're doing, you're making quality choices and that other 10% of the time you're enjoying the sunset You're enjoying the desserts, you're enjoying the finer things that life has to offer. Because life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy. And now you're feeling deprived when you see all your friends eating these other things. And as long as you have a strategy on how to dose for it, so your blood sugar is going to be ultimately good. There's no reason to deprive yourself of having that and so many people are living limited in that scope of I can't have that because I have diabetes, that food scares me. This is awful. Like, I wish I could have that and you can have that. But allowing yourself that wiggle room of 10% that is usually enough to say hey, I'm gonna get the results I'm putting into a effort 90% of the time to get the blood sugar's get the body but then the other time I can enjoy everything.
Unknown Speaker 18:50
What's your big favorite 10% fool?
Ben Tzeel 18:53
That's Oh, that's a loaded question. I was gonna say there's a restaurant here called dance and dance. And Tampa has these loaded nachos that are so good. They're like a once every six month kind of thing, but they've got like the cheese and the pulled pork, and they've got the beans and they've got the ground beef and honestly, it's actually not a terrible meal in general but there's just so it's so calorie dense. That would be one cookie dough for sure would be one. The edible cookie dough not like cookie dough. That's raw eggs. And then Honestly, I have to say this but have you had cookie butter before? I have not had cookie pokey buttered so I love cookie. What is it cookie butter? It's I don't even know how to describe it. There's like this. I know the first time I had it was from Trader Joe's and then they have some everywhere apparently I didn't know it was a big thing. But it's literally like the butter form of cookie. It's like imagine peanut butter consistency but it tastes like a cookie and it's basically straight fat and straight sugar. But it's so good. Oh my God. That is my guilty pleasure. I will not lie. That's It's so good. That Great,
Stacey Simms 20:00
okay, he's got some advice. We've You know, we've gotten some insight into how you operate. I know you have a new program that you're working on, tell us what this is all about. How can people take part?
Ben Tzeel 20:11
Absolutely. So I have a program called blood sugar boss, because everybody wants to be a blood sugar boss, you want to be in control of your blood sugars and in control of your life, getting the body that you want, and literally living life without any kind of limits. And so the premise is, you're going through and restaurants become no big deal. You can walk into a restaurant by the end of this and point out what you want on the menu and say I want that and know how you're gonna dose for what your game plan is going to be. No questions asked, like the on the exercise side of things with respect to blood sugars going low constantly, that part's eliminated. You know, you go and exercise no matter what you're doing. We're eliminating the lows. we're eliminating the highest you can truly do what you want to do without having any concerns and actually focus on The exercise instead of Oh my god, what is my blood sugar going to do? Then of course talking about the food side of things to make sure that you know what choices need to go into that 90% what choices need to go to that 10% and when you do go in that 10% How to dose so you're not concerned? Oh, man, I'm going to be 300 for the next six hours. I know exactly what to do for that. I mean, we're going into travel when travels the thing again, you know, we're making sure that you go on a trip, you're like, Okay, instead of vacation being stressful, this is no big deal. We're hitting everything on all different kinds of angles. And by the end of it, you can walk away from it saying, I am in control, no situation will faze me and this is literally everything I need to know about diabetes, and I forgot one of the other big things were kick starting your metabolism up. So you're going to be able to be prepared to get stronger and lose weight. At the same time. I'm curious you you share a lot as I mentioned on inside on social media, and the other day, I saw you share a post where you were over 300 for a while, you know, you had I think it was at a Ben canula or something like that. Are you concerned that when you share something like that, right? Do you get feedback from people saying, how could you that's so dangerous? Or, you know, how could you let that happen? I'm curious what kind of feedback you get when you are that transparent, because, you know, we all know that's gonna happen, right? And I think if there's a lot of people out there that go on social media, and they act a certain type of way, and they say, Well, my blood sugar's are great all the time. And my numbers are always the decks combined, it's flat, and everything's awesome. And that's cool. You can share that. But that's just sharing the highlight reel of life. People are almost afraid to show the authentic side of the side of them that shows I'm human that I get that annulus to these things do happen. And so I feel like by showing that, it's like, Look, I'm not perfect, I've never been perfect, and there are people out there who I'm sure have had that situation happened to them. And if anything, I think it makes you more relatable. And it's okay to put yourself out and say, Hey, this does happen to everybody. Oh, my goodness, you can eat the same thing at the same time every single day and get a slightly different result. So, in that situation, it's part of life. Everybody goes through it.
Stacey Simms 23:15
Before I really let you go, I had to laugh when you said blood sugar boss. Because when Benny was was little, I mean, he was diagnosed before he was two. So we had to use all these, like really kid friendly ways of talking to him about diabetes. And I remember when he was about four or five years old, we started talking to him about like, being the boss of diabetes, you know, and little kids like to boss stuff around. Little kids have no control over anything, right? Everybody tells them what to do and where to sit and when to wake up, or when to go to bed and what to eat. So they have no choices, and sort of get to be the boss of something was really cool for him. And then the flip side of that was I had to say to him, Look, if you were if you're not the boss of diabetes, it's going to become the boss of you. And it really worked for a long time to help us teach him and but it's so funny. I forgot all about that. Until you mentioned The name of your program. So thanks for bringing that memory back up. It wasn't something that I had remembered. But it's so important because if you don't take control over it, you mean, you have no choice, it will take control of you.
Ben Tzeel 24:11
Absolutely. And that's, that's the whole goal here is like you said, you have to be the one that's saying, I am going to actively take control over this because otherwise your life is run by diabetes, whether you allow it because you allow it to you don't take back the power from it, and you don't say, this is my life, this is what I want to do. And if you don't actively make that decision, it's gonna make it for you. And you don't want someone else or something else. In this case, diabetes making that decision for you want to live life on your terms. So you need to make sure that you are a blood sugar boss.
Stacey Simms 24:43
I love it. Well, thank you so much for joining me. Thanks for sharing the program all the best with it.
Ben Tzeel 24:47
Oh, thank you so much. I'm just glad to be able to help more people in our community and I'm just thankful for the opportunity to chat with you as always, that's always an awesome time on here.
Unknown Speaker 25:01
You're listening to diabetes connections
Unknown Speaker 25:03
with Stacey Simms
Stacey Simms 25:06
more information about Ben's program blood sugar boss in the show notes and I'll link up his Instagram account as well now I'm gonna have to go back and look now because I do get a kick out of the bonkers food that he posts like these big portions and you know wild desserts and things once in a while, but I'm thinking now he said that they had been eating at home and creating their own stuff since the stay at home order. And now I really want to take a look and see what they've been making because we've been cooking a ton I think just like everybody, right? But I haven't been baking or making desserts. My daughter I have an 18 year old daughter and she likes to bake and she's been making cookies and brownies and stuff like that, but I'm not getting creative when it comes to desserts. I like to eat desserts, but I'm not making at this point. I am barely making dinner. I am so sick of Okay. All right. Well, you know good problems to have, I suppose.
The author of the book actually I can is our Tell me something good this week, but first Diabetes Connections is brought to you by Dexcom. And we've been using the Dexcom G6 since it came out two years ago now, and it's amazing. The G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warmup and the number just pops up. I know it sounds funny if you're newer to Dexcom but we've been using it for seven years now. And when you're used to calibrating you know, and not getting that number automatically, it really does. It just seems so different. The G6 has longer sensor we're now 10 days and the new sensor applicator is so easy to use, but he does it all himself. Of course we love the alerts and alarms and we can set them however we want. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes, Connections comm and click on the Dexcom logo.
Morgan Panzirer is our Tell me something good this week she was diagnosed With type one when she was six years old, that's obviously not the good part. She is now 19, a college student who would like to become a pediatric endocrinologist. Now her sister also lives with type one. Morgan started writing the book that we're going to talk about here in middle school. It's called actually I can, Morgan was great to talk to you. She was very patient with my questions and my ignorance about equestrian sports. Here's my interview with Morgan Panzirer. Morgan, thank you so much for spending a few minutes with me. I'm really excited to hear the stories behind the book. Thanks for coming on.
Unknown Speaker 27:32
Yeah, of course. I'm so happy to be here.
Unknown Speaker 27:34
What gave you the idea to write this book?
Unknown Speaker 27:37
I started writing it in seventh grade for two main reasons. The first was I was fed up with all the misconceptions that people with type 1 diabetes hear every day, for example, Oh, you got diabetes, because you ate too much sugar things along those lines. So I decided that maybe if I could tell my story, I would be able to kind of change the way the general public views this disease. The second reason I wrote it was because I really wanted to empower others living with Type One Diabetes and show them. That doesn't have to be something that holds you back. Rather, you can use it as an opportunity to do whatever you want to do. So
Unknown Speaker 28:14
you started writing in middle school, but you were diagnosed at age six, much younger than that. Do you remember your day? Your diagnosis story?
Morgan Panzirer 28:21
Yes, I'll never forget. It is so clear in my mind. I had been drinking and peeing a lot. So my mom knew the signs of Type One Diabetes because she was a nutritionist. Yeah, so my mom knew the sign. So she decided to ask my pediatrician to test me just to humor her. She was sure it was nothing but she said, just test it anyway. So she did and a couple days later, my pediatrician called us I'll never forget exactly where we were in the car. And she said to my mom, I'm so sorry to tell you this, but Morgan does have type one diabetes, and my mom just immediately started crying. We were all shocked. We went to the Naomi berry Diabetes Center at Columbia the following day. And from there, it was just, let's get through this.
Stacey Simms 29:07
So your mother was a little bit familiar with it, but in being a nutritionist, but I can't imagine you knew at all who you're in for, and especially at age six,
Morgan Panzirer 29:15
no, I had no idea. And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine. As long as I don't need a shot. Little did I know, every day of my life, I was gonna have multiple needles among the finger sticks and other things. So my parents didn't really know how to explain it to me, and it was definitely a rude awakening for the next few days to come. When you started writing, did you share it with anybody else? Was it just for you at the time? Yes, it was just for me at the time. No one. I didn't really tell anyone about it. No one really knew that I was doing it at all. I was very private about it. But as the years went on, I eventually decided to tell my parents and they were like, you are What? So it was kind of fun. It was. It was a long process. But yeah, the beginning it was definitely just a very personal thing for me. And then your younger sister was diagnosed as well. What was that? Like? How old was she? How old were you at the time. So she was 13 when she was diagnosed, she's now 16. So I was 16 when she was diagnosed, and that just broke my heart because I had had diabetes at that point for 10 years. So I totally knew what it was like, and it made me think I would not wish it on anyone, especially someone in my own family. So to see her kind of struggle with it, and because she was diagnosed a lot older, I think it was hard for her to kind of get through it because she knew and remembered and understood what life was like prior. And now the fact that you have to make put so much thought into eating an apple, I think really kind of threw her for a loop, but I was really happy that I was there and could kind of show her the ropes and show her that this doesn't have to be the end It won't stop her. She doesn't want it too.
Stacey Simms 31:02
It sounds like you have a really good relationship with your sister. But you know, it's gotta be hard to you know your sister. So I don't want to make it like it was a perfect relationship, but due to diabetes in some way for you closer, I mean, I kind of hate that because it's a cliche, but you to share it and experience that nobody else in your family could really understand in the way you were going through it.
Morgan Panzirer 31:21
Yeah, it did. I would definitely say that it brought us closer. I mean, we always had a great relationship growing up. I mean, she was the only other girl in the house besides my mom. So we did everything together anyway. And we did have a really good relationship. But this definitely was something that I could share with her and I couldn't really relate to something like that with anyone else. So I think we, I mean, we don't talk about it a ton, but it is something that if I'm having a terrible day, I'm like, Oh, this stays the worst. And she's like, Yeah, I know what you mean. So I think in that way, it definitely makes it easier for sure.
Unknown Speaker 31:57
Okay, so you grew up in a household where After your diagnosis, your parents jumped in with both feet for advocacy. And they jumped in in a way that is unique because your dad is a trustee of the Helmsley trust, which is a as you listen, if you're not familiar, just an unbelievable funder of so much Diabetes Research and so many diabetes advocacy causes and effect. We had your dad on the show last year, but he is a very passionate person, as you know, Morgan, where he was really talking about the need for better education when people get great diabetes devices. And you know, trying to help in that respect. What was it like to know that what happened to you affected what your parents did with their lives? I mean, there's put so much time and energy into this cause,
Morgan Panzirer 32:39
oh my gosh, yeah, it was unbelievable. I mean, my dad became a trustee shortly after my diagnosis. So again, at six years old, I had no idea what that meant. But as I grew up and saw the impact he's having on this community and everyone with this disease, I'm so grateful that he went this way because I really do believe that he's making enormous differences in this community. I've already seen tons of new technologies that have come out, in part, thanks to his funding. So I'm so grateful. And my mom actually has she's a big runner. So she's run numerous half marathons and marathons with jdrf to raise money. So the fact that they're just all in for me and my sister is, there's no words to describe it. It's unbelievable. You've been able to do a lot of things yourself. You were a children's Congress with jdrf. That was in 2009. So how old were you when you did children's Congress? I was eight when I when was that something that was meaningful to you? Yeah, it was a really monumental event, I think because it really marked the beginning of my advocacy. And especially being that little I didn't really understand that I could make a difference prior to this. But when I got there and saw oh my gosh, all these kids are going through the same thing I'm going through and look at this difference we're making on a national level, I think it really showed me that I did have the ability to make a change if I wanted to, and if I set my mind to it. So it was definitely a big step for me and understanding that I had the ability to make a big change for everyone with this disease. And it definitely marks the beginning of my advocacy, as I mentioned prior.
Unknown Speaker 34:19
So tell me about advocacy for an eight year old. I know because I just people listening are kind of thinking like, well, what else? You know, there's children's Congress vote what really can an eight year old do?
Morgan Panzirer 34:27
It was crazy because we're at Children's Congress. We're talking to our senators. I didn't even know what a senator was. I was like, Who are you? Like, you seem really important, but I don't know what you do. Um, but it was really just a place for me to learn and understand and it opened a bunch of doors for not necessarily when I was eight years old still, but when I was older, it really just allowed me to understand, okay, I can do this and I can make a change and talk to these super important scary people. If I want to so I wouldn't say necessarily started my advocacy at eight years old, but it definitely opened that door and set that path or the years coming up.
Stacey Simms 35:10
So in the book, actually, I can you mentioned, you know, sugar and misconceptions.
Morgan Panzirer 35:15
Are there actually, as I say, actually, are there questions that that really have followed you that you would answer? Actually, I can. Oh, there's so many. It's funny, you should say that. Because one of the chapters towards the end of the book actually has a bunch of things that I've heard people say prior about this. And my answer to each of them is actually I can so that's really funny. You should bring that up. So yeah, it's all surrounding kind of the sugar aspect. And that always drove me crazy. Like, oh, you Sorry, you can't have this ice pop. It's not sugar free. And to that, I would say, Actually, I can. So it's really funny that you should bring that up.
Stacey Simms 35:53
Well, I mean, it's something that I think many people with diabetes experience over and over again to the point where you have to decide Are you going to be annoyed and be sarcastic? Or say nothing? Or am I going to be annoyed and continue to educate? Right and that second one, even just as a parent of a child with type one, I try to choose the second one as often as I can, but it really does wear on you. So when I saw the name of your book, I was like, totally can relate.
Morgan Panzirer 36:19
Unknown Speaker 36:20
And you ride correct. That's your sport is, is I'm gonna say it incorrectly as horseback riding.
Morgan Panzirer 36:26
Yes, that is my sport. How do I say that? What's the real sport? equestrian sports? Thank you,
Unknown Speaker 36:33
Unknown Speaker 36:35
I've not talked to somebody with type one who is you know, involved in equestrian sports. Can you tell us a little bit about how you go about doing that? I mean, because obviously, there's got to be equipment, requirements of the sport and concerns about a pump and a CGM. So
Morgan Panzirer 36:50
what do you do? Absolutely. So I started writing actually right after my diagnosis, and at the beginning, it was fairly easy to manage my blood sugar's Because I was young and just doing beginner things, but as I got older and obviously I started wearing a CGM a little later I got a little more difficult because I was riding for longer I was doing more difficult things. So it became a game of trial and error to kind of find the balance of Okay, I need to cut back my Bazell this this much time prior to getting on and then afterwards, I should sip on a Gatorade. So it was a big game of trial and error that definitely got frustrating at times. But then the whole other battle was at horse shows because when you horse show, you're not allowed to have a phone or any sort of electronic device on you. So I'll never forget there was this one show I was competing in and I go in and I do my course. So I do the jumpers for anyone that knows. So I go in, I jump my course and I come out and the judge walkie talkie over to the end gate where you enter the ring and said she has to be disqualified because she has a phone on her and I was like I don't Promise you like, I'll show it to you. It's not a phone. So they ended up being understanding but after that I had to really be conscientious about prior to stepping in the ring, having the person that was managing the in gate radio over to the judge and say she's that does not have a phone. She's wearing an insulin pump. So that was something I found really interesting. Um, but yeah, it was it's definitely an interesting sport to have type one and do for sure. Well,
Stacey Simms 38:28
you know, and obviously, you had to educate them and now hopefully the next time somebody comes through that way, they would know that a pump isn't a phone, but I'm curious too, you know, obviously writing horse is not driving a car, but it is one of the few sports where you're, you're not alone, right you have to stretch but work with me here. In a way you're you know, you're controlling the horse you're in charge, you have to be in your you have to have good enough diabetes control, that you know, if you're going low, you can Have you could have an accident you could get seriously injured for sure. Yeah. I mean, that's got to be something that I know your parents would be worried about. But as an athlete, it's it's a little bit more consequential in a way than like my son. He's played every kind of sport but if he goes low and basketball, he's probably you know, he's just gonna get himself off the court. He's he's not taking a horse
Morgan Panzirer 39:21
Yeah, it's, it's interesting because there have definitely been times where I'm so invested in riding and what I'm doing that I don't even realize how low I am. So I really have to be careful and always be watching I wear my Apple Watch which is a huge help because I just clicked the Dexcom app and my blood sugar pops right up. So that's made it a lot easier but as you said, there's definitely an added component of stress because if something happens to me, I'm either a gonna fall off and get seriously hurt or be by horses going to be running around loose in the ring. So
aren't really ideal circumstances. For sure,
Stacey Simms 40:00
my apologies to you and anyone listening who is familiar with equestrian sports hearing me painfully make my way through trying to describe. But I appreciate it. Obviously, your parents have read the book, and they must be so proud of you. But was there anything in there that you thought? I don't know if I want my parents to read this? Are you? I mean, I know it's nothing terrible. But you know, in terms of, I think sometimes the people I've talked to with type one, are worried that they're going to make their parents worry more, even as adults, they just don't want their parents to worry. And I was curious if that went through your head at all, as you were releasing this book?
Morgan Panzirer 40:35
Yeah, I mean, there's one chapter in particular that comes to mind where I'm just very raw about my emotions. And at home, I'm not someone who's like that. I'm very quiet. And if something's bothering me, I'll go to my room and deal with it there. So I think putting that all out on paper and having that kind of out to the world and then have my parents read it. I don't want to say I was hesitant, but it was it was interesting because I didn't really know how they were going to react to me being like, Oh, I broke down into tears because they don't usually see me do that very often. So I was, I was a little scared as to what they would think like, Oh, no, is she like crazy at our room? Like what is she doing all the time, but I think they just they were very understanding like, if this is how you want to deal with it, this is how you deal with it. You do whatever you need to do.
Stacey Simms 41:25
When I was looking it up on Amazon earlier, I laughed because you know, Amazon has that if you bought this, you might buy that or, you know, bought and there was my book, there was the world's worst diabetes mom and a bunch of other great diabetes books too. But I laughed because I guess with the teenager in the parenting, maybe they put it together. You know, the world's worst diabetes mom is not about really being a terrible parent. It's about the insecurities that we as parents have when we make mistakes with our kids. I'm curious for you. It sounds like your parents gave you an awful lot of independence and had a lot of confidence in you and I Assume your sister as well. Any message for parents of kids with type one who think we're just messing up and we're the worst?
Morgan Panzirer 42:07
You're not the worst, I can start by saying that. I think I would say try to give your child as much independence as possible without making it unsafe. My parents, as you said, gave me a ton of independence. And I think it worked really well for me, but it's also really different. So what works for me may not work for my sister. So you kind of have to be willing to cater to your child's needs and what you think will suit them best. But independence for me was key.
Stacey Simms 42:36
And then I'll flip it around and say, okay, you're you're a college student. Now you're you're not you know, you're not quite done with being a teenager, but the high school experience is behind you. Any advice for teenagers? type one?
Morgan Panzirer 42:47
Yeah, I would say teenage years are tough just because your peers are naturally a lot more judgmental than they are when they're adults. Do what you do. Don't hide anything. If they want to be jerks about it. Let them be jerks about it. That's their problem. And just don't let them get the best of you because I was bullied by freshman year of high school for wearing a CGM on my leg and was shorts on and things like that. So I would just say, don't let the haters hate who cares, they can do what they want.
Unknown Speaker 43:18
And for you now, what are you studying? Did I read you want to be an endocrinologist?
Morgan Panzirer 43:22
Yes, I am studying biology in Spanish on a pre med track. And I'm hoping to go to medical school for pediatric endocrinology. Did you have an endocrinologist growing up that inspired you? When did you realize you want to do something like this? It's funny, it was kind of the opposite. Hopefully, he's not listening right now. He wasn't bad by any means. But I just thought it would be really cool if I had an endocrinologist who also has type one who can relate to what I'm going through and make me feel like I'm not alone. So if I want that from my endocrinologist, I want to be able to give that to others. So I'm hoping that eventually, if I make it through med school, I'll be able to give that experience to younger children who are also fighting type one. That's great. And then someday you could do the next book, which is actually you can Exactly.
Stacey Simms 44:18
Work it. Thank you so much for talking with me. often don't hear about those teen years and growing up with type one until people are adults, so I can't thank you enough for sharing your story. I really wish you the very best with this.
Morgan Panzirer 44:28
Of course, thank you so much for having me.
Stacey Simms 44:33
I will link up more information about Morgan's book, just go to Diabetes connections.com click on the episode homepage. As usual, there's also a episode transcription. I started doing that in January of 2020 of this year, we're slowly going back the catalog I'll probably put the transcripts in for past shows as well. But you know, there's a lot of shows we're up to episode This is 310 if you're keeping track so I'm doing the best I can with transcriptions but 2020 and going forward getting great feedback on that. And thank you, I really appreciate hearing from you. If there's something that you really like or don't like with the show, and the transcriptions have been a big hit, people listen to the show people read the show, and some people listen while they read the show. However, I can serve you That is what I'm here for. And I'm kind of laughing. But really, that's one of the reasons why I wanted to add the transcriptions. I think there's some excellent information. It's not about me, it's about the information and if you can read it, I know some people just prefer that. So very cool. Thanks again.
And, you know, when you go to Amazon, and you see, it just makes me laugh, right? The you see Morgan's book with my book. I don't know why it makes me laugh. I mean, I'm a serious author now. But I do get a kick out of serious author (laughs). I do get a kick out of seeing people I know or have met, along with my book. It's just really a lot of fun. I don't know. Maybe it's silly, but I really get a kick out of it.
All right, great month of shows coming up. I'm very excited about July because we're going to be talking about selecting an insulin pump, not which pump is best, but how do you select one that's like the number one Question all these Facebook groups? What pumps should I get? What pumps Should I get my kid? We're also gonna be talking about pancreas transplant. I've wanted to talk to somebody who had a pancreas transplant for years and years because you hear you know how difficult it is or how does it even happen. And so we've done that and I'm really thrilled to share that interview with you in the coming weeks. And of course, the fiscal would squares. That chaotic show will be out soon as well. So lots of good stuff coming up. More on the way. Thank you to my editor, chunky tennis solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, kind to yourself.
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged