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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: Category: advocate
Mar 31, 2020

In mid-March, the folks at Eli Lilly held a conference call for diabetes writers, bloggers, and podcasters. The call was to talk about Lilly's participation in the new Part D Senior Savings Model, as well as general updates about our insulin affordability programs.

After listening to some of the remarks, Stacey asked about the price of insulin and suggested a bold way forward. You can listen to what she asked, and the response here. Transcript is below.

Please note: there were many other advocates on the call - this excerpt only features Stacey's question but she was not the only person pushing for change. In particular, Amy Tenderich of DiabetesMine was also vocal about lowering the price of insulin.

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

Links to insulin assistance programs:

Lilly 

NovoNordisk

ADA

GoodRX

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Transcription:

Stacey Simms  0:06

Hey everybody, welcome to diabetes connections. Although this isn't really going to be show today. This episode is more like an audio excerpt. I'm Stacey Simms, of course, and we will have a regular episode with all of our usual segments dropping as soon as later today, or more likely tomorrow.

I debated putting this one out. The production quality isn't exactly as it always is, because I'm doing a quick turnaround here. And it isn't usually how we do things, but I think it's important.

So here's what happened on March 16, the folks at Eli Lilly held a conference call for diabetes writers and bloggers and podcasters. The press release said during the call, you'll hear more details from Andy Vicari a leader on the Lilly diabetes insulin team about our participation in the new part D senior savings model as well as general updates about our insulin affordability program. grams. That was the PR quote, these calls are rarely groundbreaking. They do them sometimes they'll put out a press release that says largely the same thing. But they do give you the chance to speak directly to the people who help mold the policy. And I do try to join when I can. I am so glad I did this time.

The PR team welcomed us and told us that in addition to the planned remarks, Mr. Vicari would speak to the company's response to the Covid 19 situation. It became pretty clear though, that this really just meant he was going to go through the already published ways to get coupons and use the Lilly call center, you know, that kind of thing, which I will link up in the show notes along with other ways to try to get a break on insulin prices from all the manufacturers. If you're a regular listener, frankly, it is the usual stuff as far as I know as of this date, which is March 30th 2020. Nothing substantially new has been announced.

It's important to note and you'll understand why when you hear the audio From the call that I'm going to play, when you hear my question, there have been no widespread reports of people not being able to get insulin. There isn't a supply problem. I asked a little bit about that, because I had just been contacted by a woman whose local pharmacy wasn't carrying what she needed. But that was a local situation, and as far as I know, has since been resolved.

When it became clear that they weren't really doing anything new for what is an unprecedented world situation, a world health crisis, I decided to ask another question. I asked the folks at Lilly, why not? Why not do something very bold, very different and really show us what they stand for. And I want to play you that Please come back around at the end for an important announcement about what you can do to make your voice heard on this issue. Here is the unedited version of that portion of the call. The gentlemen answering my question is, as I said earlier, Andy Viacari, senior director, diabetes US insulin brand leader for Lilly:

(Call begins)

All right, I'm going to ask this question and I understand it might not be a very popular one. But, again, looking ahead to as you said, there will be things in place for people who are, you know, losing their jobs who are poverty level, that sort of thing. In a time of really what is very much uncertainty, understanding that people with diabetes cannot live without insulin, as you know, why not be a hero in the space and say right now, that Lily will cut the price of insulin to one level to $35 to $25. Why not let people fill prescriptions for whatever they are written for from their physician for a price that while would obviously be very dramatic, very different, would help people around this country feel better about the one thing that they are? I can't, I can't. I'm not exaggerating this, you know what we are in this community all of the people on this call one thing that people are devastatingly worried about, there are already reports of people who don't have insulin in their pharmacy. They're very, very isolated. I have no idea what brand they are. But this is something that's on the minds of everybody was type one diabetes and many people with other types. Why not consider something that dramatic, even if it's temporary?

 

Andy Vicari  4:32

Yeah, appreciate the passion and and some of the frustration in the question, I think it's important to acknowledge that, you know, what I can say from a human log standpoint. You know, similar to any other time, if we cut that price, could that disrupt the supply through our other supply channel partners that certainly we have contracts in place with them for a certain price so it would go beyond our ability just to cut that price. We would be having to negotiate with them. So certainly something that I think is feedback for us. I like the way you framed it. Why not? Maybe not the hero I think yourself and the folks that have any type of diabetes is the hero in this case, but we can play a significant role. What I what I will say is, we are constantly from a leadership standpoint, it's not a an overstatement to say, Mike Mason in our executive committee is constantly looking at for things we can and should be doing this time. So while I can't sit here and say it is something that has been considered and being planned, I think these conversations are further fuel for those types of interventions at a at a at an enterprise level. What could we be doing around this space? And it's important that I'll make sure that I continue to come back to my leadership, as we close this call and have those conversations What else could we be more vocal about? What else could we come out and announce to help people in this time and it may have all Just given the circumstances with the country and what's happening. So what what I can't promise you is that there'll be an immediate reaction. But what I can say is we're always looking at these things. And the steps that we've taken, the quickest way for us to do that would be with our authorized generics. Again, we have similar contracts the same contracts in place with our, with our wholesalers and with our pbms and payers, so we would have to be renegotiating with them, and they'd have to be okay with that. Now, you could argue that they they can and should be, it would be very difficult for them to say anything other than that's a good idea, but I can't comment for others in the supply chain. I know that's perhaps not the exact answer that you'd like but it's a it's a real answer on we are always considering these other options. And by cutting our price just automatically, we would put at risk those folks that are stable on our products with just not getting covered by the P ends and payers that have us on today.

 

Stacey Simms  7:00

I do appreciate the answer. I just think that - just a bit of an editorial statement, you know, a crisis is a time to define what your company is all about and what an opportunity, I really hope you guys consider that and let the pbms and the others say no, I mean, let's give them the chance to, to not step up to the plate. And let's see what happens.

(end of call)

But do you think will Lily take any bold steps? I know most of you are skeptical, but you never know. And as I said that was an unedited portion of the call. There were other diabetes bloggers and writers on the call asking their own questions that hat tip to Amy Tenderich of diabetes mine for seconding. My thought and backing me up and and pushing ahead on that too.

But what can you do? Is there anything right now to take action on Patients for affordable drugs. A group we've talked to here on the show before, has put out a call for all three insulin manufacturers to lower their prices right now, in response to this health crisis. There's a letter it is being released on Tuesday, March 31. I've signed it virtually, of course, and I would urge you to check it out and sign it as well. I'll link it up in the show notes and I'll share it on social media once it is live. Let's keep pushing on this issue. It is in times like these, that companies truly show us what they're about that big change can happen. And as Amy said on the call, that it's a time for disruption. It The time is ripe. So make your voice heard. Let's do what we can. I know a lot of you already, as I said are not optimistic, but we cannot give up.

Thank you for tuning in. Regular episodes are coming your way the next one will be out as soon as tomorrow. I'm Stacey Simms. Subscribe to the show on any free podcast app so you don't miss out or just come back the way you found this audio excerpt. Thanks again for joining me

 

Unknown Speaker  9:09

Diabetes Connections is a production of Stacey Simms media. All Rights Reserved all wrongs avenged.

 

Transcribed by https://otter.ai

Feb 27, 2020

Have you ever had a doctor give you a "wake-up call?" or try a "scared straight" tactic? These techniques - and a lot more - blew up on Twitter recently. Stacey noticed that it also seemed that the doctors andhealth care providers who weighed in weren't interested in listening to diabetes advocates online. What's the disconnect all about?

Full transcript below

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

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Episode Transcription: 

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available on Amazon as a paperback ebook and audiobook at Diabetes Connections.com.

 

Announcer  0:15

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:26

Welcome. This is one of our mini episodes, shorter episodes that I put together starting at the beginning of this year, just when I have something to say, news to share or anything that doesn't fit in the traditional longer format interview show that we do every week that drops on Tuesdays.

I am your host, Stacey Simms, and I want to talk to you today about well, I really want to talk to your doctors about something, but we'll get to why and maybe how to share with them. I want to talk to you about what are doctors think of diabetes, and I don't really mean our endocrinologists Just to hopefully know what they're talking about and stay up to date. I mean, the other doctors that we see or we bring our children to pediatricians, the doctors, the dentists, you know what I mean, right? There seems to be this disconnect between what the diabetes online community which doesn't speak in one voice, I get it. But what we have learned over the years and what we talk about all the time, in terms of there's a hashtag language matters, right?

There's this disconnect between what we as patients want, which is no blame and shame. Work with me, help me with resources, give me the information, let me make my decisions. And the physicians who many many, many times want to scare patients straight, you know, we're gonna give them a wake up call. We're going to show them how bad they're doing and that will make them do better. And this disconnect played out on Twitter recently and I want to share with you how it went and then I would ultimately was shared at a medical conference.

Before I jumped right in though I do want to Say with those doctors who are you know, in the scare em  straight kind of school, I really do think the intentions there are good. I don't know any doctor who wants their patient to walk around with a 14 A1C, you know who obviously isn't feeling well and is going to be in poor health. I don't think any doctor wants that. The question is, why don't some doctors listen to their patients more? Why don't they seem to believe us when we tell them what we think works and doesn't work. So that's my perspective. today. Let's go through what happened.

There's a guy on Twitter. His name on Twitter is @DGlaucomflecken. He says he's an ophthalmologist, a comedian, and a speaker. On February 17. He tweeted, “Want to know why diabetic eye exams are so important. I can take a 28 year old with an A1C of 14, show her a picture of a normal retina, then a picture of her diseased retina. Then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.”  And he posted the pictures that he had just talked about now.

Kind of an innocuous tweet a couple of years ago, I probably wouldn't have thought anything of it. But and I was not alone here. There were some telling language in this that made me want to speak up. I'm going to link this up if you want to go through the Twitter thread. It is ginormous because a lot of people chimed in as you can imagine. I'm going to read a few tweets here. I'll just read first names from the people who tweeted this out. So these are the advocates who tweeted back

Megan wrote, “As someone who works in eye casualty for a while and has type 1 diabetes. I have heard doctors have similar conversations. I then also seen patients walk away upset and distressed. Living with diabetes can be filled with anxiety. I find it best not to feel that scare tactics aren't always the best understanding and empathy for diseases hard to manage may be better.”

Melinda wrote, “Did you ask her if she could afford her insulin and supplies? If she had a support network to encourage her or did you just decide to be Dr. Judgy Pants?”

Melissa wrote, “Do you know if she went to her car and cried from helplessness like I used to after I exams with an ophthalmologist who had This kind of bedside manner? It took some time to find a doctor who could help me create a plan instead of send me off alone and frightened.”

And then Mike wrote, “This mentality scared me into doing something better briefly as a teen. Soon enough, it led to hopelessness and years worth of higher A1Cs until love, actual good doctors and peer support inspired me to change how I lived”

I wrote “Curious if there are any long term studies showing this is effective, other than the patient saying, Wow, that's a wake up call. What is it like for them? 10 years down the road? Did it help hurt make no difference?” And I actually wrote “not being sarcastic, genuine question” because you know, Twitter, but then the ophthalmologist chimed in back.

And during all the time these advocates are saying these things, other doctors and other people are telling us how wrong we are. So the original ophthalmologist chimes in with, “I'm just showing people their own body part. I've never had a patient get upset with me for showing them pictures. I have taken up their own body part. I don't need a study to convince me to keep doing that.”

Another doctor said “Patients Like pictures. We do the same with coronary angiograms. In cardiac patients, a picture's worth 1000 words, also puts in their minds the idea of the now and the potential future, good practice.”

Another person a medical resident wrote, “I like it, it's hard to convince some patients without symptoms that keeping an A1C down to an arbitrary number is worth the effort of diet, exercise and expensive meds. This could help motivate many patients.”

And then he writes “Also, it's not the author's job, the ophthalmologist job to make sure the patient has all of the resources needed to adequately treat the patient's diabetes during their brief eye exam. That's our jobs as PCPs.” So that's what he's going to be or may be already is I can't really tell from his Twitter bio primary care physician.

Okay, so, literally, this went on for days, I kept getting notifications, because I kept chiming in, like, Are there studies like, oh, let's talk about this, you know, and, as you can imagine, it got pretty nasty sometimes. I mean, there's jerks in every Twitter thread on every side, so we're not going to talk about that. We're going to talk about the discussion and the disconnect because this is that fascinating.

Most of the doctors really believe this is a good thing, I'm so glad that that primary care physician chimed in and said, “well, it's really not your job as an ophthalmologist to give them any resources or do more with them.” And this original doctor kept chiming in and saying, “No, I really do try to support patients.” It was just one tweet, you know, we don't know what he's really doing. So maybe he is, you know, talking to them more.

What about your experience? In my experience with those other doctors, right, not the endocrinologist, the eye doctor, the dentist, even the pediatrician with Benny, they have no idea what diabetes takes. That's okay. It's not their specialty. I don't mind that. They don't know. I mind when they try to tell us more than they know. Right? Like, I had an eye doctor once Tell me, Benny was not in the room, he asked, “how long has he been diagnosed?” 12 years. I think at that time. “Well, you know, 20 years is when the complication starts showing up in the eyes.”

And I actually said out loud because I'm a pain in the ass patient. And I said, Really? What was the last time you actually read anything in a medical book about diabetes? I tried to be nice, I said it kind of nicer than that. But it's it really, when did you learn about type 1 diabetes? And he said in medical school, and I said, and when was that, right 25 years ago? And really, when were those studies done? Right? If you're looking at a study from 25 years ago, that study probably followed people living with diabetes who had been diagnosed at least 10, if not 20 years before that. So your data is kind of outdated. And we know if you're a longtime listener of the show, you know, from studies like the EDIC trial, and many others, that eye complications, along with many other complications are way down and almost non existent for people with diabetes, who have access to good care and insulin. I mean, we know there's a whole other world out there, but we know these complications when care is given our way down.

And whenever I talk about complications, I always want to say complications can happen even with the best care with diabetes. I mean, look at life - complications can happen with anything. So we try to do the best. We can see just other factors, you know, genetics, environmental, what have you. But with eyes in particular, I've talked to two endocrinologists in the past year, who say when they see a patient with any kind of eye issue under the age of 40, with Type 1 diabetes, they call everybody who's nearby, because they never see it. They want everybody to come in and identify it and look at it and see what the poor patient, but see what it really is all about, because they never see it anymore.

So my little conversation with that eye doctor, hopefully made him rethink a little bit about how he talks to other people with diabetes. I've had the same conversation with my pediatricians when I feel like educating because sometimes it is absolutely exhausting. And I had to back away from the Twitter thread because of that, that it is exhausting to keep educating and educating. You don't know everything about type 1 diabetes, you're not a specialist. Thank you for pointing this out. But what can we do about it? What's the point? Why would you say you're going to be in trouble? I'm going to give you a wake up call. I'm going to scare you straight. Why would you say all those things Thinking the outcome is going to be positive?

If you're aware of a study that talks about these things, and I was pilloried on Twitter for suggesting there could be a study, what would the control group look like? people who never get good health information, people who are never shown their bad eyes, or that they're going to lose a limb or blah, blah, blah, right? No, look, I don't create scientific studies. But you don't have to be a genius here. But why couldn't you something really short, that just gives you a taste of what we're talking about here?

Do a six month study, right? Pick an age group to a six month study your 25 year olds with Type 1 diabetes, everybody gets the same exams, but your feedback is - you're doing terrible. You have to be nervous. We're scaring you straight, kiddo. It's a wake up call. Now go get better.

And the other one is, Hey, I really feel like we could do more together. Well, how can I support you? What are the challenges you're seeing that are creating these issues with Type 1 diabetes, there may not be anything I can do to help but I understand that you're probably doing the best you can because type one is really difficult.

And then the other one, the third part of the study would People who are told here are your test results. See you next, right with no emotional kind of feedback. Why couldn't you do a quick study of that and see what happens in just six months? My guess is you would see really interesting results.

So better minds than me, thank goodness picked up on this and actually put it in a presentation at ATTD, at the international conference for advanced technologies and treatments for diabetes. This is the conference that I just talked to Kevin Sayer. That episode just aired a couple days ago. This is where he was in Madrid, Spain. So this is a huge international conference and this Twitter thread made it to a presentation, which shocked me. What shouldn't have shocked me is who was doing the presentation. This was the hashtag talk about complications presentation by Renza Scibilia and grumpy pumper Chris, who we've had them both on the show separately to talk about this and other issues. But this talk about complications slide that made its way to the presentation showed the original a tweet from the doctor, the ophthalmologist comedian, and they actually blacked out his name, which I didn't do here, because Twitter is public. And they showed the original tweet, you know, very effective wake up call. And then they put another tweet next to it. And I think that this is a hope that physicians might consider saying this instead.

So let me read you the original tweet again. And then the one that they suggest. So the original tweet, “Why are diabetic eye exams are so important? I can take a 28 year old with an A1C of 14 show her a  picture of a normal retina, then a picture of her diseased retina then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.”

Here's an alternative to saying that “Diabetes is really tough, and you're managing as you can right now. Thank you for coming to see me eye screening is really important. We know having a higher A1C increases the risk of diabetes related conditions. Let's work together to try to reduce the risks.”

Now I know some of you and maybe hopefully if you got your physician or not Doctor or dentist or somebody else to listen to this episode, it might sound very, you know, Kumbaya and woo woo. And, you know, let's work together. But I'm telling you, as the mom of a kid with type one, as a person who sees doctors for her own conditions, it is so much more helpful to hear this than to hear the other scary, effective wake up call.

I mean, you know, when I go to my doctor, and I say, I'm really upset, I've been trying hard and gaining weight, you know, what I don't want to hear is “You're really fat. And we know that being obese can help lead to health complications, and higher increase of cancer. Because you know, you really want to watch out what happens, you have this risk and your family and blah, blah, blah. So just stop eating desserts.”

What would be really helpful is, “Yeah, boy, it's really tough. I can see that your whole life, you've been a healthy weight. You're an active person who knows how to eat well. What's changed in your life in the last couple of years? How old are you? What is your metabolism doing? Let's sit down and talk about how things are changing maybe so that you can find a plan that might help you change”

I mean, I just came up with that at the spur the moment, but it's so much different to here. Let me help you. And let's figure out what you can do to make this better rather than let me blame you and shame you and scare you. A lot of people tune that out. And if they're scared, they don't want to do anything to make it better because they lose hope. I really hope that some healthcare professionals who saw this on Twitter took a moment to stop and think about it. I know a lot of them responded. And remember kind of insulting frankly, calling the diabetes advocates, trolls and one person called the bats. I don't know if that's a UK thing, or I don't know what that was all about. And there were some people who got kind of nasty, as I said earlier, but I really hope that people who saw this conversation, maybe had a different conversation with the next patient that came into their office, maybe a person with diabetes, who saw the conversation had the words now to tell one of their health care providers. Look, this isn't helping me. I need you to speak to me in this way. Which is really, really hard to do.

I will say before I let you go here that a lot of the physicians piped in with Well, my patients never react poorly when I give them this news, they all seem to appreciate it. Do the doctors not know that we talk to them differently than other people? Do doctors not know that some people like get dressed up to go to the doctor will really make sure that they are well groomed. I mean, it sounds silly, but you know exactly what I'm talking about. Right? doctors don't realize that we go to our cars. And as Melissa said, in that tweet, sometimes we cry, we call the friend and say you won't believe what happened to me. Or some people will tell a nurse things that they won't tell a doctor or they'll tell the front receptionist and they'll get the anger and so the doctor, people don't tell their doctor unless you're me and you're a pain in the butt.

Very few people tell their doctor, hey, you're wrong. Or I don't like this. Or even Can we try something different? People don't talk back to doctors. And the fact that they don't know this… Come on, guys. You got to be better. You got to think about it.

What do you think my way off base here? Were you part of that? Twitter chat, did it make you mad? Did it make you think? Let me know. You can always email me Stacey at Diabetes Connections. com. I'll put this in our Facebook group as well Diabetes Connections of the group on Facebook. I'd love to keep the conversation going. If you're a physician who has listened to this long oh my gosh, thank you so much. I cannot tell you how much we appreciate it when you take a moment to consider the other side of the stethoscope for lack of a better word. Let's keep this conversation going.

Of course, if you think I'm wrong, I am the world's worst diabetes mom, I can live with that. And you can find out much more at the website diabetes dash connections.com. Please subscribe to the show on any podcast app or just keep listening through social media or however you found us. We appreciate that we're not going to tell you where to listen. We just hope you keep on tuning in. I'm Stacey Simms, and I'll see you back here next week.

 

Unknown Speaker  15:57

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

 

Transcribed by https://otter.ai

Oct 8, 2019

Halloween doesn't have to be scary for children with type 1 diabetes or their parents. Moira McCarthy & Stacey are back with Ask the DMoms. They answer your questions about all those bags of candy, lows while kids run around the neighborhood, pumps and d-tech under costumes and much more.

Order Stacey's new book - The World's Worst Diabetes Mom

In Tell Me Something Good: A good beat and a follow-up that lets us say yes to the question.. is there a doctor in the house?

Join the Diabetes Connections Facebook Group!

Listen to our previous episode with Kelly Kunik dignosed as a child on Halloween.

Sign up for our newsletter here


00:00 Show Open: What's on this week?

1:40 Stacey welcome: Thanks to Friends for Life Falls Church! The World's Worst Diabetes Mom is available for pre-orders! It will be on Amazon Nov 3

5:20 Ask The D-Moms: Halloween

35:30 Tell Me Something Good: Blindfolded Drummer & Dr. Heather Walker 

38:30 Where's Stacey Going Next?

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Jul 9, 2019

JDRF’s Children’s Congress kicks off this week and we’re talking to three really incredible delegates. Meet Jack, Hannah, and Kabir who will all tell their stories to legislators. You'll also hear from Stacey's local advocacy chair to find out what Children’s Congress is all about and how to apply next time around.

Join the Diabetes Connections Facebook Group! 

Our Community Connection this week is all about getting diabetes gear to stick in the hot sweaty summer. We’ve got advice from parents of little swimmers and adults who take hot yoga.

Scroll to the bottom to see a list of items/products mentioned during this episode.

In Tell Me Something Good, we’ll talk about a trip of a lifetime as a 16 year old travels to the remote Yukon with a school group. 

 Sign up for our newsletter here

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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Show Open/Tease

Stacey Welcome - Find out more about Project 50 in 50

JDRF Children's Congress Greater Western Carolinas Chapter Delegates

Community Connection Getting Gear to Stick:

TMSG: 

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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!

Click here for iPhone      Click here for Android  

This list is full of brand name and generics. I’ve linked to a website when the brand has one. You may also want to try Amazon or ask your medical supply provider. Just as everyone’s skin is different, so is our health insurance. It’s possible that what works for you may actually be covered. Stranger things have happened.

I expect to edit & add to this list in the weeks and months to come. Hope it helps!

Sticky Wipes

These make the skin a bit tacky in order to give the material you put on top a better hold.

Skin Tac wipe or liquid

IV Prep wipe

Mastisol liquid

Stoma Care wipe w/aloe

Hollister skin gel

ReliaMed wipe

Tapes/Patches

Stay Put Medical Patches

Tegaderm film dressing

Opsite Flexifix transparent film

Hypafix dressing tape

RockaDex Dexcom patches

GrifGrips adhesive patch

Waterproof Bandaid

Wraps/Bands

Kinesiology Tape (Includes brand names KT Tape, Rock Tape, Vara Tape)

Vet Wrap

SleekSleeves

Bands4Life

Athletic Sleeves

Rash Guard/Swim shirt (cut to fit)

Misc.

EK Tools Tag Punch Classic (Dexcom-sized hole punch)

Dexcom & Libre Rash (Public Facebook Group)

May 21, 2019

For 14 years, Kerri Sparling has shared her story on the very popular blog, SixUntilMe. This month, she published her last post. We take a look back with Kerri and go beyond the blog. We also asked her mom, Debbe, to join us! Debbe shares what she thinks of Kerri's accomplishments and influence and we talk about raising a child with type 1 in a time with very different technology and tools. 

Join the Diabetes Connections Facebook Group! 

In our Community Connection – help for people with diabetes who have insurance but still can't afford all of their supplies. We catch up with Diabetes Will's Way as they celebrate 5 years!

Sign up for our newsletter here

And Tell Me Something Good – meeting your people for the first time. How diabetes conferences are good for the body and the mind. Listeners share their stories and Stacey talks about a recent TCOYD conference.

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00:00 Show Open - What's going on this week?!

1:46 Stacey Welcome - She shares a great mother's day present: Benny was Rufus at their local JDRF walk and Lea worked a food truck at the walk. Proud mama moment! Some info about the website - it's still under construction - you can listen to shows there but lots of good new stuff is coming!

5:15 Interview with Kerri Sparling and her mom, Debbe

40:00 Catching up with Lisa Oberndorfer, the founder of Diabetes Will's Way - she's Will's mom - as she marks 5 years of helping people with health insurance who still can't afford what they need. Will was diagnosed at 13 and just graduated high school this year. He was the valedictorian of his class! We also hear from Kathy who received a grant for her daughter's Dexcom CGM.

55:15 Tell me something good: Sarah is 26 just recently diagnosed and met her first T1D people at the EPIC conference in Denver. Stacey talks about the TCOYD conference and a specific session with Dr. William Polonsky of the Behavioral Diabetes Institute 


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 
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Feb 5, 2019

Let's #Talk About Complications. That’s a hashtag created by this week's guest who's taking a topic that most of us would rather avoid, and putting it into the spotlight.

Chris Aldred is better known as the Grumpy Pumper and he wants us to stop being ashamed to talk about possible complications from diabetes and to stop the blame surrounding this dicey issue.

More information on his blog here

Find out more about Spare A Rose

Find out more about Diabetes Podcast Week

Join the Diabetes Connections Facebook Group! 

Also this week, your diabetes educator is getting some help when it comes to staying current on technology. Stacey talks to AADE's Chief Technology and Innovations officer about a new resource for educators called DANA.

And, tell me something good: a big step forward for a 5 year old two years into her T1D journey and a big award for a tween.

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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1:40 Stacey welcome, explains that Chris Aldred's son was just diagnosed with type 1 over this past weekend. She explains Diabetes Podcast week and shares a story about Nick Jonas's wedding reception, not far from where she lives.

8:30 Interview with The Grumpy Pumper

39:20 Interview with Crystal Broj

47:00 Tell Me Something Good: Congratulations to 5-year-old Rose who just checked her blood sugar for the first time! And congrats to 12-year-old Logan Merwin for winning the JDRF Spirit Award at Run Disney! Learn more about Logan, the Elbow Bump Kid


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 


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Dec 11, 2018

Advocate and author Quinn Nystrom was diagnosed with type 1 as a young teenager, just a few years after her little brother developed T1D. Her high school prom date inspired the title of her book, "If I Kiss You Will I Get Diabetes."

Quinn shares her story, talks about running for office and tells us what's next. 

Plus, MySugr CEO Frank Westermann on how his company tries to help make diabetes suck less (and we get Stacey's reaction to that motto).

Want Stacey to speak at your event in 2019? Email stacey@diabetes-connnections.com or connect on any of our social channels.

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2:00 Stacey welcome

3:00 Stacey shares podcast reviews (one is a question about the Facebook group, link below)

Join the Diabetes Connections Facebook Group! 

5:00 Scott Johnson interviewed Stacey last week via FB live. You can watch that here or read the transcript! Stacey also shares the story of the first time she met Scott at the Friends for Life conference.

8:20 Interview with Quinn Nystrom

47:30 Interview with Frank Westermann

57:40 Stacey talks about events for next year


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 
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Get the App and listen to Diabetes Connections wherever you go!

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Oct 23, 2018

Once called deliberately non-compliant, this week's guest is all about the importance of language when it comes to diabetes. Renza Scibilia has some strong opinions about why words really matter.

We’ll talk more about her non compliance – it has to do with her Looping, using one of the do it yourself options - and about her diagnosis as a young adult. Plus, information from Diabetes Australia and The Grumpy Pumper

In our Community Connections this week, the Type 1 Renegade Run is making noise in the Northeast. The event this past weekend marks the 7th year of this obstacle course and block party.

And a closer look at keeping insulin at the right temperature from the pharmacy to your fridge. JDRF, ADA & Helmsley Trust are teaming up to study this issue. 

Did you see Chris Ruden pop up in the NBC Titan Games promo?! Here's our interview with the T1D body builder from last year.

 
Join the Facebook Group! 


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1:30 Stacey Welcome - Syracuse and DC round ups, looking ahead to the DiabetesMine Summit

4:00 Interview with Renza Scibilia

39:40 Interview with Renegade Run's Tyson Sunnerberg

52:00 Know Better: insulin study

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Sep 27, 2018

A difficult but important interview with Nicole Smith Holdt. Her son, Alec, died in 2017 just after he came off his parents' health insurance and realized he couldn't afford his supplies. He began rationing insulin and died less than a month later.

Stacey talks to Nicole about how this could have happened and what her message is to the diabetes community and to lawmakers. Nicole will be at the #Insulin4All rally and protect Sept 30 at Eli Lilly headquarters.

More information:

Insulin4All Protest information

NPR: High Price of Insulin Leads to Lethal Rationing

Snopes: Did Alec Smith Die Because He Couldn't Afford Insulin


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Sep 4, 2018

It's been 20 years since Nicole Johnson took the crown, becoming Miss America. That was just five years after she was diagnosed with type 1. At diagnosis, her doctors told her she was too sick to continue college, to pursue her dreams of being a journalist and to have a baby.  Nicole shares how she overcame that prediction to go on to finish school, compete and win pageants and to have a child a few years later. We’ll also talk about some controversy among the Miss American organization today.

Other Miss America contestants with type 1 include Sierra Sandison and Caroline Carter (click to listen to our previous interviews with them)

Plus, one small step toward a DIY Omnipod Loop. Learn more about OpenOmni.

Stacey also shares a recent issue with Benny's insulin pump and what they did for a backup plan. 

This podcast is not intended as medical advice. Please contact your health care provider with any questions. 

Join the Diabetes Connections Facebook Group! 

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1:50 Stacey Welcome 

2:45 Stacey talks about the official launch of Jesse Was Here for those who've lost a loved one to diabetes

4:15 Listen to Nicole win the crown in 1998

6:00 Interview with Nicole Johnson

53:15 Stacey talks about OpenOmni (you can also learn more about NightScout here and OpenAPS here)

56:10 Stacey shares their issue when Benny's insulin pump wouldn't charge

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 

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