Diagnosed almost 60 years ago, Joanne Milo loves technology and helped start the popular Loop and Learn group. She’s also passionate about diabetes and aging.
It's hard to believe now, but many people diagnosed in the 1960s and 70s were told they wouldn’t live to age 40. Thankfully, that wasn’t true. But the medical world wasn’t prepared for them to actually live long and healthy lives. There is very little research or support for people with type 1 over the age of 50. Imagine when you get to 80 or beyond!
Joanne Milo is also the author of the book and blog “The Savvy Diabetic” and she has a lot to say about how we can all prepare better for emergencies or hospital stays.
Joanne's website - The Savvy Diabetic
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
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Episode Transcription Below (or coming soon!)
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast..
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In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com.
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New Congressional report from Democrats on the House Committee on Oversight & Reform keeping the focus on insulin pricing. It says Medicare could have saved more than $16.7 billion on insulin if it were allowed to negotiate like other health programs. This final report is the culmination of an almost 3-year investigation. Documents from Eli Lilly, Novo Nordisk, and Sanofi indicate these firms "raised their prices in lockstep in order to maintain 'pricing parity'. One particularly damning quote – a Novo Nordisk pricing analyst remarked, '[M]aybe Sanofi will wait until tomorrow morning to announce their price increase...that's all I want for Christmas',"
https://www.medscape.com/viewarticle/964799
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Surprising move in Europe – they’ve pulled the SGLT-2 inhibitor Forxiga from the market for people with type 1. AstraZeneca said the decision isn’t about safety but didn’t explain further. There are already concerns about an increased risk of DKA from SGLT-2 inhibitors in people with type 1.. that’s why they aren’t approved in the US.. but many advocates say the benefits outweigh the risks. The UK Chief Executive of JDRF, said it is "appalling" that the drug has been withdrawn, as quote "many people with type 1 are finding it an effective and useful tool to help manage their glucose levels."
https://www.medscape.com/viewarticle/964844
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The FDA issues a warning to Medtronic over it’s diabetes headquarters. This is related to a July inspection that led to recalls of the MiniMed™ 600 series pump, and a remote controller device for MiniMed™ 508 and Paradigm™ pumps. Medtronic says they are implementing a range of corrective actions and process improvements related to the observations, and will continue reviewing these actions with the FDA.
https://www.kpvi.com/news/national_news/medtronic-diabetes-receives-fda-warning-letter/article_bf45a3c3-1759-5fff-b234-6a71cd874a98.html
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Here’s a new one. Israeli scientists have discovered that the human fetus makes insulin in its intestines before birth and say this means that adults may have a “backup” system that could be reactivated to treat diabetes. This is peer-reviewed research published in the journal Nature Medicine. These scientists say there’s a lot here they don’t understand and practical applications are a long way off but.. the hope is that some kind of medication could one day reactivate these cells in adults.
https://www.timesofisrael.com/israeli-scientists-say-humans-may-have-backup-insulin-system-diabetics-could-use/
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Good news Sugarmate fans! Late last week the app makers announced it would once again connect with Dexcom for US customers. They issued an apology and thanked users for their patience. Still working on re-connecting for those outside the US. This is all about changes to the Dexcom API, the way apps talk to each other.
https://help.sugarmate.io/en/articles/5790778-reconnecting-your-dexcom-data-source?fbclid=IwAR3FC616f4mGt4yAGUcEvLDaTVpDhC7aqQIxQPN7lk5ZBNJVxASIDzK57k8
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Dexcom expands it’s physical presence, opening a second large facility in Arizona. Big celebration this week with a ribbon cutting ceremony at the 500-thousand square foot facility and a job fair. In looking into this story, I found that earlier this year the other Dexcom center was used as an indoor drive-thru Covid vaccination site.. a partnership between Dexcom, the Arizona Health Department and Walgreens.
https://www.bizjournals.com/phoenix/news/2021/12/14/diabetes-device-maker-opens-another-mesa-facility.html
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Time Magazine’s Heroes of the Year are the scientists behind the COVID vaccines. While there are of course many people at work here, they highlighted four – including Dr. Drew Weissman who has lived with type 1 for more than 50 years. He and partners began working on mRNA science for vaccines in 1997, publishing a landmark paper in 2005. There’s a lot more to this story of course.. DiabetesMine ran a photo of Weissman almost a year ago, getting the vaccine and you can see his insulin pump on his belt.
https://time.com/heroes-of-the-year-2021-vaccine-scientists/?utm_source=twitter&utm_medium=social&utm_campaign=person-of-the-year&utm_term=_&linkId=144413683
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Miss America memorabilia moves to the Smithsonian, including items from Nicole Johnson, the first Miss America with type 1 diabetes. Johnson posted about this on social media saying she was donating her insulin pump, swimsuit and letters from children with diabetes that she received during her reign in 1999. The exhibit will mark 100 years of the competition. Other items include a hearing-aid-compatible microphone used by Heather Whitestone, the first deaf Miss America of 1995 and the first swimsuit worn in the pageant.
https://www.smithsonianmag.com/smithsonian-institution/miss-america-contest-is-forever-shaped-by-its-swimsuit-competition-180979125/?fbclid=IwAR0YAQt1Lo1X5hB1yce2Ixftk5Y3I6_ncLLCbNBy9H-nKttLtBaYgSXx_Is
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New York Times article today about model Lila Moss wearing her omnipod during a fashion show a few months ago. They included a few other runway models with type 1 and got some quotes from JDRF.. nothing too new here but worth mentioning. One tidbit.. it’s not uncommon, these models say, for pumps and CGMs to be airbrushed out if the client or they wish it to be – they’re keeping their tech on for the shoots.
https://www.nytimes.com/2021/12/15/style/lila-moss-hack-diabetes-runway.html
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Before I let you go, a reminder that the podcast this week is my favorite things! I had a great time with this episode.. it’s short and fun I think – and I talk about accessories, storage, toys and more. Listen wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.
Next week our predictions episode – DiabetesMine Managing Editor Mike Hoskins joins me as we talk about tech in the new year.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
This week… something completely different! It’s an episode all about my favorite things. With apologies to Oprah, this isn’t about the holidays – it’s a little late for that! And while some of this might make good gifts, this more of a season-less list. Just good stuff I like.
Couple of rules I set for myself: Nothing that needs a prescription. Nothing that I’m getting paid for. No one on this list will even know they've been mentioned until the episode goes live!
Hope you enjoy! -Stacey
Here are the links to everything I mention:
Keep it cool:
Sticky stuff/application:
Benadryl spray and Flonase spray
Cases/accessories
T1D3DGear (warning, profanity)
Dia-Be-Tees shirts and stickers
Books:
Just for fun:
Heroic Kid (play d-tech for toys)
Misc.
The Useless Pancreas (marketplace)
Guitar Pick
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
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-----
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Click here for iPhone Click here for Android
Episode transcription below:
Stacey Simms 0:00
Diabetes Connections is brought to you by... Dario Health – Manage your blood glucose levels. Increase your possibilities.By Gvoke HypoPen, the first pre-mixed autoinjector for very low blood sugar. And By Dexcom. Take control of your diabetes and live life to the fullest with Dexcom
This is Diabetes Connections with Stacey Simms.
This week, something completely different. It's an episode all about my favorite things. With apologies to Oprah, this isn't about the holidays, it's a little late for that. And you know, some of this might make good gifts. This is more of just something I've been thinking about doing for a long time. So I would consider this a bit of a seasonless list, just good stuff that I like. And unfortunately, unlike Oprah, I haven't hidden everything I'm talking about here under your seat as a gift. So I can't do that.
But I did set a couple of rules for myself, you're not going to hear me talk about anything today for which you need a prescription. Right, I'm not gonna talk about medical stuff, and nothing that I'm getting paid for. I will put the links for all this stuff in the show notes, but they're not affiliate links. So that means they go right to the product where I think it's most easily available. They don't go to a special link, you know, which tallies you up and then pays me. I mean, there's nothing wrong with that as long as everybody knows what's going on. And a couple of these folks may sound familiar, I've worked with them before, we have had partnerships and sponsorships with the mostly the booked clinic program. But I really just wanted this to be a fun way to share my thoughts. If you have a product that I mentioned. And the link is wrong or doesn't go exactly where you want it, please reach out. I want to make this great for you and easy for my listeners. So drop me a line Stacey at diabetes connections.com. And maybe we'll get a thread going in the Facebook group to find out some of your favorite things. Because you know, Benny is older now and the products that we really needed, you know, like the super cute insulin pump pouches that he used when he was three years old, he does not use anymore. So I don't have recommendations for stuff like that. Maybe we can kind of get a list going and I can do a follow up in a couple of weeks or months for listeners but you really should be in the Facebook group. Anyway, if you're on Facebook, I know not everybody is so if you're there, come on over. Alright, so here are a few of my favorite things
let's talk about keeping insulin at room temperature. A couple of products I really like for that we don't have a ton of issue with this day in and day out. I do live in North Carolina and Benny of course is outside quite a bit in the summer, he does go to summer camp. When we've needed to keep something at room temperature. We use a Frio generally these Frio wallets pretty standard in the diabetes community you probably know about them. What's nice is you can get them at CBS. Now, I think Walgreens carries them used to be online only. They're really easy to use. Please follow the directions. Don't be like me and oversaturate and then you can't get anything in the wallet. You have to just read the directions. You'll figure it out better than we did. But Frio doesn't keep it cold. It just keeps it cool. But we love Frio.
Close to edging it out. And the only reason it doesn't here is because of the price. And because it doesn't yet cover vials. But that's coming is the VIVI Cap. These folks reached out to me middle of last year, probably spring of last year and sent us a sample we decided to try it on Benny's trip to Israel. If you'll recall, my son went to Israel with his non diabetes camp last summer for a month. This included tons and tons of outdoor activity in temperatures that were in excess of 100 degrees. Quite often, he packed two bags, one was like the go bag, three days worth of supplies. And then the other bigger bag that stayed inside or in a refrigerated area, at least the insulin part of it did on the bus or you know, wherever they went, I have my suspicions as to whether it's stayed perfectly refrigerated the whole time, but only a little bit of insulin went into the desert with. But the idea was he would take a pen, we would use the VIVI Cap, and then he would just change the pen out continuing to use the VIVI Cap in his backpack. Whenever he needed more insulin. He had vials he had pens we use both in his pump. And it's always nice to have a pen in case you need to give yourself a shot something like that. So when he came home and this is so typical of my son went through his bag, for he did a great job with diabetes, but there must have been like a communications problem because he never changed out that insulin pen. He never needed to give himself a shot, which is probably why but he just always used the vials that I'd sent him with. I sent him with way too much insulin for a month but you know, you know mom's What am I gonna do? So upshot of this long story is that the one insulin pen that we sent to Israel with stayed in hot temperatures definitely in excess of probably 75 degrees around the clock, and certainly in excess of 100 degrees for several days at a time during the daytime. And what happened to it right it was with the VIVI Cap the whole time so we decided to test it out. You know how he supervised setting right? I wasn't going to let him use this pen and then jaunt off do overnights or whatever he was with us. And look, we would know right away if that insulin was no good. And guess what? It worked perfectly. It was fantastic. He was in range. I mean, he was really we were really watching obviously, right. But he was in range pretty much the whole three days. So it was fantastic. And I was definitely converted to VIVI Cap. That should be their tagline guys call me if you can stand the Israeli desert heat, right, you can certainly hang out a day camp in North Carolina this summer. They often have promo codes, discounts. It's more expensive than the Frio wallet. But it's also really durable and lasts for a whole year. And it has different sizes. So it will fit whatever insulin you're using. My understanding is that they are working on a similar bit of technology for insulin vials, and that would be great.
Let's talk a little bit about getting stuff to stick. I have a whole document about this. If you haven't seen it, it's been a pop up for a couple of months. It's been incredibly popular. So I haven't taken it down yet. But I'm probably going to move it over to the bookstore section. Do you don't have a bookstore section on the website, we're kind of creating a place to put documents a lot of stuff is free. There are PDFs, so we're gonna move that over there. But of course there there's my book to buy and there will be more later this year. But the getting stuff to stick is so personal. I think it's really hard right? Everybody's skin is so different. So here's what we have liked over the years could not keep anything on Benny skin with a Skin Tac that is the brand that we like we get Skin Tac from Amazon. Over the years we've gone from just using the little Skin Tac wipes to using the liquid bottle we used to liquid for many years. I think gosh, Benny was like 13 or 14 and he was like no more. I don't want that it's not portable enough. He's never home. So he uses the wipes. Now. He uses nothing to dissolve it. So I have no favorite product for that. He literally just rips things off his skin. I cringe every time but hey, it's not my body.
We like Stay Put Medical patches. That's the brand, Stay Put Medical just foyer for years and years. We had trouble in the water. I tried vet wrap I tried all the stuff that all the moms tell you to try. The Dexcom overlays that come free from the company are great, but it didn't work as well in the ocean, or with sweat, that kind of thing. So Stay Put patches really were fantastic for us. The story I always tell is Benny with a diabetes camp for a full week, right Saturday to Saturday. And then we went to the beach and we restarted the ducks calm. This was a couple of years ago. And it survived to Stay Put and the Dexcom survived a week of diabetes camp where they swim and sweat and you know, they're pretty gross for a whole week. It's hot. Again, as I said we live in North Carolina, and then three days at the ocean, sand and ocean. All that stuff that you get and it really did stay put. So I really love that they're big. He got an incredible tan line. That's one of the only downsides of it.
We used Benadryl spray, Benny had a brief time of having a mild allergic reaction. I think this was to the Dexcom G5 years ago and my husband came back from the store with over the counter Benadryl spray not Flonase requested, and it worked fine. So it's kind of a weird, favorite thing, but I haven't heard a lot about Benadryl spray, but I'll mention it here.
I also really really like next care waterproof Band-Aids, the brand doesn't really matter. I mean, it's just a Tegaderm bandage, but I'd like to mention it because you can get it at the drugstore or the grocery store. It's over the counter. Unlike a lot of the stuff that has to be ordered from your medical company or from Amazon, you can take a waterproof bandage and in a pinch, slap it over your Dexcom or slap it over an infusion set. I mean, you have to cut a hole into for the infusion set. But sometimes you can just slap it on top. We've done that and then gently pulled it off later to reconnect to the tube to pump. And it works great. I've heard a lot of people say they're afraid of doing that because they don't want to block the signal from the Dexcom people. We have done this many, many, many times I can show you photos. When we went to the Dead Sea in Israel, I did not want to take a chance of the salt. Right. It's so salty, corroding the transmitter. So we put a waterproof bandage over the Dexcom. And he left it on for a couple of days. I don't know the probably wasn't very comfortable, but he didn't seem to care. And it worked fine. So that's my in a pinch favorite thing at the beach
let's talk about cases and organization something that my son doesn't care about at all. And if I if this were me, I'm the kind of person that I love pouches and organization and cool stuff like that and he really doesn't care. But I will go through and tell you what I like. I am a huge fan of T1D3DGear. This is just a fantastic family in the diabetes community to begin with, and their stuff is awesome. So as you can imagine T1D3DGear, they're making stuff right they're printing it out on their 3d printer and it's everything from trays, which we do use, I love those makes your supplies really easy to find. And they've got different sizes for different brands to insulin protection vials, which I like a lot, and they will do custom colors as well, we've been so lucky, where's the wood that I can knock that we've never actually like dropped a vial, but I always put the vial we're using in the case. And that makes me feel so much better. It's just a really easy, it kind of looks like R2D2 in a way. I don't think that's by design, but it's really helpful and really handy and they're making super useful products. They also make the cutest ones like if your kid wants a unicorn or different options. I'll link up their website, as I mentioned,
Benny doesn't really like pouches, but I make him use them anyway because otherwise his diabetes bag is just a complete mess. So we like the ones from casualty girl, some of these have a bit of profanity, you know, all my diabetes stuff. You can fill in the blank there, but they have a bunch of really clean ones, obviously, you know, for younger children, even for my kid I don't like him carrying stuff in public that that has profanity on it, but they have some really cute stuff specific to diabetes, also personalized. They put names on it, and they were so nice. A couple of years ago we gave away a bunch of their stuff at friends for life, so I always like to recommend them. I also will recommend and link up Disney themed pouches that don't look super Disney. I know a lot of you especially friends for life people you're big Disney fans. I am too but I don't like to have like Mickey Mouse on my purse. I like it to be a little bit more subtle. And at red bubble. There's a bunch of people who will put together pouches you can see the samples. They just kind of hint at Disney so I have the small world pouch but it's just like a pattern that is featured in small world. It's not actually it doesn't say small world. I got Lea my daughter for Hanukkah. This year. I got her one that has the Haunted Mansion wallpaper on it. You'd never know unless you knew. So very cool stuff. It doesn't have anything to do with diabetes. But I love red bubble. They also have a fun bunch of diabetes stickers there. Oh, speaking of stickers. The best is Dia-Be-Tees This is my friend Rachel. And she has amazing T shirts. She is so creative. She's got great stickers, she made an ugly Hanukkah sweater for diabetes, because a couple of years ago, she makes these great, ugly Christmas sweaters for their diabetes steam. They say funny stuff on them. But I pointed out to her like, hey, everybody celebrates Christmas and she was immediately on it. My favorite stickers are the Tyrannosaurus Dex, get it and the Banting fan club that she made this year for Dr. Banting. Very, very cool stuff. And I'll link up to her Etsy shop.
Let's talk about books. I promise I won't talk about my book here. I talk about it enough. But I really would like to recommend some books that have helped us a lot over the years. My favorite, the one that I always recommend is Think like a pancreas A Practical Guide to managing diabetes with insulin. And that is by the amazing diabetes educator Gary Scheiner. He is out with an updated edition. So he did this book, it's got to be I don't know, Gary, I'm guessing 10 years old, but he does update it frequently. I think it's the third edition now. It's really a great source and resource to understand your diabetes and your child's diabetes better and more thoroughly, let's say then perhaps you might get these quick endocrinology visits, definitely better than the information you're getting on Facebook.
I of course love raising teens with diabetes, a survival guide for parents by Moira McCarthy that has not been updated for the technology that has come out since its publication. However, I don't think that matters. I think that there are so many wonderful ideas, thoughts and ways to recognize how tough a time it is for teenagers and come through that time with your relationship with your child intact. So I really recommend that I know Maura is working on updating it. But even still, it's so good because I think so many people with teenagers, even as we say all the time Oh, it's such a tough time. It's they feel so alone. I still I mean gosh, you guys I always wonder and I call Moira. She would vouch for me. And I'm like I'm not doing this right. It's hard. It's really hard.
I also love Sugar Surfing how to manage type 1 diabetes in a modern world by the amazing Dr. Steven ponder, I would be lying if I said we are perfect sugar surfers. But we have used a lot of the principles that are in this book. And it does help you understand so much about how everything works and the dynamic way of managing. You know before CGM. It's incredible to think how much Dr. Ponder was able to do. And now with the monitoring, it's really, really helpful. But I will say you can get this for free. If you're newly diagnosed, I believe it's the first three months it might be six months, I will link it up. But I'm telling you right now, if you get this for free when you're newly diagnosed, put it away for a couple of weeks at least maybe put it away for six months, because it's it's pretty advanced in my opinion, and you got to learn diabetes, you got to learn a little bit more about it before you start worrying about the Delta and other stuff that's in here. But I love Dr. Ponder and highly recommend that one.
I get asked a lot about children's books. And you know Benny and I read so many diabetes children's books, so many I mean how many are there in the market but we read them so often when he was little And my favorites probably aren't even available anymore. You know, Jackie's got game was about this kid who was trying it for the basketball team. And then he goes low. We loved Rufus comes home, which is about the JDRF. Bear, there were a couple of that diabetes kind of popped up into lots of picture books that we read if the person in them didn't have diabetes, or the animals in them. But I gotta be honest with you, I struggle to recommend children's books, because I'm not reading them with little kids anymore. And I think they're a really good judge, right? I do. Like when I go low, a diabetes picture Guide, which is a terrific book by ginger Viera. And Mike Lawson. And this is a terrific book, because both of those people live with type one, we had them on the show, you know, I've known them for years I full disclosure, but I think it's so valuable because as a parent of a child with diabetes, who doesn't live with diabetes herself, I don't have that kind of insight. And I really trust those authors to share that information and help a child kind of give voice to how they're feeling when they go low, that sort of thing. It's a fun, cute book, it's, you know, it's not serious. It's not scary. It's really great.
And I'm just gonna say, and don't be mad parents, if you're thinking of writing a children's book, just carefully consider it. Look at what was already out on the market. I talked to a lot of people who spent a lot of money to put these books out, you know, most of them are not published by a traditional publishing house. Some are but most are self-published. And that's great. But you know, gosh, there are so many out there right now that are very similar. So you know, we don't need a general explainer, please think about what the need in the community is, what's the unique need, you can fill? And I would say, you know, that's why I like when I go low, because it's written by people with type one, we do need them. I mean, the children's books are great. And there's some wonderful ones out there, but I'll tell you, what I'd like to see is some elementary school and tween level books. That's what we really need around here. We don't need another picture book, we need something that an 11 year old or an eight year old could read and see themselves in, you know, baby sitters club is the only thing I can think of where diabetes is there, but it isn't always the focus, it would be really nice to have something else like that. Frankly, I'd like to see that adult level book as well. There's a couple of authors that have written books were diabetes featured but isn't like the main point. But boy, it would be really fun to see that in like a blockbuster bestseller kind of book if they got it right of course.
Alright, let's talk about some just for fun stuff. years ago, Benny got his years ago on his 10 year diaversary. So five years ago, we gave Benny the I heart guts, stuffed pancreas. I heart guts is a company that makes they're so funny. They make stuffed animal type body parts, I'm sorry, they call them plush organs. And since we purchased a few years ago, they have a few more options on their website. They have socks, they have pouches, I was talking about pouches earlier, there's one that says party in my pancreas. But what I really like about this is you can get something for your kiddo with type one. But you can also find something for a sibling who doesn't have diabetes, right? If you're if you're just looking for something silly, I gave my daughter the heart, right? I mean, knock on wood, thank God, there's nothing wrong with her heart. But it was a symbol of my love for her. And while she thought it was kind of silly, you know, it's a way to include her. So diabetes isn't always you know, the middle of everything. And they I mean, this place absolutely cracks me up. There is so much here. They've got puns as far as the eye can see. So if your kid needs their tonsils out, if your wife is having a knee replacement, these are just really fun. And I may have to go and order a huge amount of the stickers.
One of the things I absolutely love is that a lot of businesses have popped up to make toy accessories for kids with diabetes. So you know, you've probably heard like Build A Bear has a diabetes kit, you can get that online. years ago, the American Girl doll kit kind of kicked this off. But there's a bunch of people in the community making this stuff. So I recommend heroic kid, and they make tiny little CGMs for your Elf on the Shelf. If you're into that, or you can put it on an American Girl doll. You can have a libre, they now make a bunch of insulin pumps. It's awesome. I love this stuff. I mean, I can't even imagine if we'd had a real real looking insulin pump for Benny when he was two years old that he could have stuck on his Elmo. Holy cow. So heroic kid is fantastic.
And the other thing for kids I wanted to share. And I I tell if you saw my newscast last week, we talked about this I broke this story in 2019. Jerry the bear, and Rufus the bear are now one, there can only be one, there was only one bear. And we talked about this when beyond type one and JDRF announced their alliance in 2019. I kind of jokingly asked like what happens to the bears? And they answered it with a straight face and said only one. We're gonna figure this out because it doesn't make any sense to have to, you know, we don't want to be spending money on this kind of stuff. So what happened is Rufus is now $22 which is a lot less than the starting price of Jerry. And if you're not familiar, I probably should explain. So Jerry, the bear is an interactive toy made by the folks at Sproutel, they have gone on to make things like my special AFLAC duck. They have, I think it's called a purrburl. It's like a little stuffed animal that kind of helps kids kind of calm themselves. It's interactive that way. And but they started with Jerry, the bear was their first product developed when these guys were in college. It's a really smart team. But Jerry is a teaching toy. And there's an app on he's evolved over the years and really looks great. And of course, now he looks like Rufus. So this is Rufus on the outside Jerry on the inside, and it's available for $22.
I'm gonna call this next category, miscellaneous, because these were just a couple of things that I wanted to make sure to tell you about. But they don't fit into many of these categories. And the first one popped up into my Facebook feed. But it looks beautiful. It's a ring. It's kinda like a zigzaggy ring. But it's called to my daughter highs and lows ring, it is only $36. It is cubic zirconia. It is sterling silver plated with 18 karat gold. So this is not a you know, super expensive super valuable ring. And that's fine. I think it's great for what it is, makes it a terrific little gift. And it comes with a card that says the ring stands for the highs and lows in life, wear it as a reminder that I will be there for you through all of them. That's pretty cool. And hey, moms, I mean, you can buy it for yourself. Even though we go through some highs and lows, they don't all have to be diabetes related.
I want to mention, this is very silly. But this is our miscellaneous category. And these are my favorite things. I think everybody who uses a Dexcom should have a guitar pick lying around. Because you've probably seen the trick to use a test strip to to pry the Dexcom transmitter out of the sensor for a couple of reasons doesn't work for us. I don't know if our test strips are weak or our transmitters are strong. But we have found that a guitar pick does the trick very easily. And I'll tell you the number one reason why we have to remove Dexcom transmitters, it's because then he will start a dead transmitter, or I'll start a dying transmitter. And he'll ignore all the notifications, we'll put the sensor on and clip the transmitter and then the transmitter is dead. So yeah, the guitar pick comes in handy to pry that out and then put the new transmitter in.
I also want to recommend a website not a product here but Useless Pancreas.com is a clearinghouse for so many products. They've done an amazing job. We had them on the podcast earlier this year. But since I talked to them, they've added so much. So if you're tooling around and you're not sure even what you're looking for, like I need to get something that'll make stuff stick or I need something that'll they have these two categories, like what will make my kid happy. It's just a neat place to go and find a diabetes marketplace. So I'd like to recommend that because, you know, you go on Amazon, there's so many choices. But they've done a nice job of really trying to narrow it down and give us one place to go.
Alright, before I wrap it up here, I did ask Benny if he had any favorite diabetes, things to recommend. And he looked at me like I hit three heads. After thinking about it for a minute or two. He said, The silent button on my pump and Dexcom. So I can't say I blame him for that. I am happy that he has the vibrate only we wish every alarm could be silenced. We understand why they cannot be.
So there you have it. That's my very first favorite things episode, I will put a link in the show notes. For every item that I talked about here, I want to make it easy for you to find. Again, if you are haven't mentioned and you have a product and you're not crazy about the link I use, feel free to email me Stacey at diabetes connections.com or ping me on social media and we will figure it out. I want to make sure that people can find your stuff. And if you have your own favorite things that you'd like to list, I think I will put something in the Facebook group and maybe we'll share that in the weeks to come.
Thank you as always to my editor John Buchanan from audio editing solutions. Thank you so much for listening. A couple of weeks left in December, we are going to have these Tuesday episodes, as I mentioned, including kind of a look ahead to next year some predictions possibly. And I'm really hoping to get one more technology update for you in before the end of the year trying to get someone from Tandem to come on and talk about that R&D update that I spoke about in the news episode. Last week. They laid out their five year plan for new products and software. But I will see you back here on Wednesday for in the news or if you listen on podcast. That'll be Friday. All right. I'm Stacey Simms. I'll see you back here soon Until then be kind to yourself.
Benny 24:43
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Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast..
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In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com. You can also get a big discount right now at diabetes-connections.com – use promo code celebrate to save $4
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Our top story this week.. More good news for mice.. and maybe some day for people. Yale researchers are looking at an oral medication for type 1 diabetes. These lucky mice had metabolic function restored and inflammation reversed. There are a lot of studies going on to make oral insulin work – liquid insulin is destroyed in the stomach before it hits the bloodstream. This research involves a nanoparticle drug vehicle that can not only bring insulin to the pancreas safely, but the casing itself has therapeutic benefits. It’s made out of an acid that seems to reduce the rogue immune cells that destroy the beta cells in the first place. The team says that the nanoparticles could also be used to carry other molecules, which could help with other conditions.
https://newatlas.com/medical/oral-insulin-pill-prevents-type-1-diabetes/
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A new tubeless pump is making its way through the US regulatory process. The FDA gives breakthrough device designation to AMF Medical’s Sigi (SIG-ee) Insulin Management System. This is a patch pump, like Omnipod, but it’s rechargeable and re-usable – you get two so you don’t have to go without while it’s charging.
It’s also an ACE pump, that’s alternate control enabled which means it can interact with CGMs and controller devices like smartphones. This designation isn’t FDA approval, but it should speed up the review. In the press release the company says, “Clinical study data has shown that Sigi™ is delightfully easy to use.” Which is kind of a nice thing to see in a write up like this.
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Big news from the UK this week – they announced everyone in England with type 1 will be eligible for CGMs covered by the National Health Service there. This was preceeded by coverage for the Libre flash glucose monitor. That program was supposed to start at 20% but almost 50% of people with type 1 have opted in and the results in terms of better health and lower a1cs have really been outstanding. Next up, leaders there say they want CGM covered for anyone using insulin, regardless of diabetes type.
https://pharmaceutical-journal.com/article/news/nice-proposes-wider-use-of-glucose-monitoring-devices-for-type-1-diabetes
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New research into insulin pricing is shining a light on the middle men.. many of us have known about PBMs for a long time. Researchers at USC found that drugmakers’ share of revenue from insulin sales has dropped in recent years — and a greater share is being siphoned off by pharmacy benefit managers, drugstores, wholesalers and insurers. In 2014, 30% of insulin revenue went to PBMs. By 2018, those same middlemen were receiving 53%. Terrific write up as usual by David Lazurs in the LA Times – he lives with type 1 and I always love his stuff. I’ll link this one up. The researchers here say since the PBMs are getting a greater share, there’s pressure on the drug’s manufacturers to keep raising prices so their own profits don’t suffer. It’s worth noting that these findings were possible because of newer state laws bringing greater transparency to insulin sales.
https://www.latimes.com/business/story/2021-11-30/lazarus-healthcare-insulin-prices
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What works to bring down the price of insulin? Ask China. They decided a round of price cuts is due and as a result, 42 insulin products from companies in China and abroad took an average 48% price drop. Otherwise, they wouldn’t have been used in that country’s public hospitals. Lilly gave up the largest discount: After a 75% reduction, the price of Humalog went down to about $3 per pen. China has been making pharma cut prices for the last few years for other medications. This is the first time insulin has really been affected.
https://www.fiercepharma.com/pharma-asia/novo-nordisk-sanofi-eli-lilly-cut-insulin-price-china-s-latest-vbp-off-patent-drugs
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Bigfoot releases some information and reaction to their Clinic Hub. This is how endos and clinics use the data from the Bigfoot Unity System to support patients. Unity launched this summer – it’s their smart pen program. When you think about multiple daily injections whether it’s for type 1 or type 2.. it’s hard for health care providers to see what’s going on day to day.. are doses correct, when they’re giving, etc. Unity can also include CGM data. This is the launch phase of Clinic Hub.. Bigfoot says they’ve also added streamlined patient onboarding and more flexibility for patient updates and prescription management.
https://www.drugdeliverybusiness.com/bigfoot-biomedical-touts-cloud-based-program-for-managing-diabetes/
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I’m including the Vertex news here.. we reported this back in October but you probably had everyone you know send you that New York Times article about a cure for type 1 – at least in one guy.. I won’t rehash everything here.. it’s about stem cells, one patient off insulin but on immunosuppressive drugs.. Personally, I’m very hopeful, but the Times write up overly simplified a lot of this, in my opinion. Good write up in Healthline that I’ll link to.
https://www.healthline.com/diabetesmine/vertex-type-1-diabetes-research
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In the UK lots of attention on their Strictly Come Dancing competition… when it became apparent contestant Nikita Kuzmin wasn’t hiding the Libra glucose monitor on his arm. He wasn’t hiding much.. he took off his shirt for this performance. Loads of social media comments applauding him.. for both. By the way, his dance partner, Tilly Ramsey is the daughter of professional chef Gordon Ramsey.. and they were eliminated from the show this round.
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quick reminder that the podcast this week is with the UK co-lead on diabetes, Dr Partha Kar. We had a great chat about access and their Libre program and his whole philosophy.. really fun episode. Next week you’ll hear from the folks at ConvaTec, they make almost all the pump insets and they have some great info for us all.
you can listen to wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
Kenny Rodenheiser is a diabetes educator, and a big part of the Children with Diabetes community. But when he was diagnosed as a young teenager, he felt angry and isolated and wanted nothing to do with anything like a diabetes conference. Kenny talks about what changed his mind, his road to becoming an educator and his current role at Dexcom.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
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!
Episode transcription coming soon
Check out Stacey's 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!
-----
Get the App and listen to Diabetes Connections wherever you go!
Episode transcription below:
Click here for iPhone Click here for Android
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast..
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In the News is brought to you by Real Good Foods! Find their breakfast line and all of their great products in your local grocery store, Target or Costco.
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Our top story: Lucky mice but will it work in people? Israeli scientists say they have a one-time implant that brings blood glucose into non-diabetic range. The implant is healthy tissue grown in a lab – the glucose dropped by an average of 26-percent and stayed there the four months of the study. The engineered cells absorbed sugar, improved glucose levels and also improved absorption in other muscle cells. Long way to go before this is tried in people.
https://www.timesofisrael.com/diabetes-reversed-in-mice-for-4-months-after-one-time-implant-from-israeli-lab/
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Sports and kids with type 1 can be a tough balance, especially on multiple daily injections. A new study called the Car-2-Diab trial looked at what changes work well for teens during exercise. There’s a lot here, so I’d urge you to follow the link I’ll provide, but basically everyone in this small study experienced overnight hypos and some high BG just after exercise. The most common fix was a drop in total basal insulin. These researchers say sports and type 1 have a – quote - “irreducible level of confounding factors.” Which.. from personal experience, I can say.. I agree.
https://www.endocrinologyadvisor.com/home/topics/diabetes/type-1-diabetes/execise-impacts-insulin-doses-in-children-with-type-1-diabetes/
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Big new study about Medtronic’s 780G pump, available in Europe and in front of the US FDA right now. This looked at 3200 kids age 15 and younger. Time in range was 74% overall and overnight 82%. The 780G uses the Guardian Sensor 3 as a hybrid closed loop where you still bolus for meals. Overall these kids saw a 12-percent bump up in time in range.. which is a better boost than Medtronic’s first hybrid closed loop system, the 670G.
https://www.fiercebiotech.com/medtech/medtronic-s-newest-minimed-insulin-pump-improves-glycemic-control-children-study
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Good write up about adults with type 1 which make up more than half of all new cases of type 1. This summary in the ADA publication Diabetes Care shows that there are big differences between adult and childhood onset, many of which aren’t understood. This also points out that misdiagnosis occurs in nearly 40% of adults with new type 1 diabetes, with the risk of error increasing with age.
https://care.diabetesjournals.org/content/44/11/2449
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New app to retrofit a regular old blood glucose meter and make it a bit more high tech. Computer vision technology developed by University of Cambridge engineers can read and record the glucose levels, time and date displayed on a typical glucose test.. it does this with just the camera on a mobile phone. The technology, which doesn't require an internet or Bluetooth connection, works for any type of glucose meter, in any orientation and in a variety of light levels. The app is called Gluco-Rx Vision. You think about a lot of the services and programs that have popped up that require Bluetooth and remote monitoring – this helps people take advantage without having to buy a new meter.
https://www.myvetcandy.com/newsblog/2020/11/14/computer-vision-app-allows-easier-monitoring-of-diabetes
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Tidepool gets a boost for it’s Period Project… from Amazon. The Tidepool Period Project is trying to address the unmet needs of people with diabetes who menstruate. This funding from Amazon Web Services will go to supporting prototype concepts and user interface designs at Tidepool. There’s not a lot of data on diabetes and periods despite the fact that we all pretty much know anecdotally that there’s a lot going on in terms of glucose levels and hormones. Kudos to Tidepool for gathering this info for future research.
https://www.thedailytimes.com/business/diabetes-and-femtech-intersection---tidepool-receives-aws-financial-support-for-tidepool-period-project/article_7b5c40fb-3020-5428-aa0b-69ea242675ec.html
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More to come, including diabetes in the world series.. But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.
Real Good Foods. Where the mission is Be Real Good
They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—we really like their breakfast line.. although Benny rarely eats the waffles or breakfast sandwiches for breakfast.. it’s usually after school or late night. Or sometimes it’s dinner. You can buy Real Good Foods online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com.
Back to the news… And it’s sports news! As of this taping the Atlanta Braves have won Game 1 of the World Series.. with Adam Duvall getting a 2-run home run. We’ve high-lighted Duvall here before.. he was diagnosed with type 1 at age 23. We’ve seen a lot of posts on social media of him taking the time to meet with families during the season, signing autographs and taking photos with his pump. Good stuff.
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And finally.. Just as the newest Apple watch was released - without blood glucose monitoring.. rumors are already swirling about the next version of the watch. As we’ve said.. you’ll know it’s real when they start clinical trials.. but Dexcom’s Chief Technology officer talked to me this week about their new agreement with Garmin and looked ahead to the G7 and possible non invasive blood glucose monitoring. Interesting stuff you can listen to wherever you get your podcasts or if you’re listening to this as a podcast, just go back an episode.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
The term “Walmart Insulin” has always referred to cheap, older formulations. But now an agreement with Novo Nordisk means Walmart is selling own branded version of Novolog. It's the very same insulin, with a much lower cash price.
What does this mean for us as customers and for insulin pricing overall? Stacey speaks to Michael Burke, Walmart's Director of Brand Pharmacy Merchandising. They talk about who can get Relion Novolog, how much it costs, what your endo needs to know and how insurers are reacting.
www.getinsulin.org
LA Times article Stacey mentions
More info about Relion Insulin
Dear Dr. Banting (we need your voice!)
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
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
Episode transcription below
Stacey Simms 0:00
Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premix auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
This week, the term Walmart insulin has always referred to cheap, older formulations until this summer, a new agreement with Novo Nordisk means Walmart is selling its own branded version of Novolog.
Michael Burke 0:38
real sense of pride for us at Walmart to hear the great feedback. Our pharmacists and pharmacy teams are very excited about the product and how they can help support patients.
Stacey Simms 0:50
That's Michael Burke, Director of brand pharmacy merchandising for Walmart. We'll talk about who couldn't get this, how much it costs. Why now and what's next.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed right before he turned two back in 2006. And my husband lives with type two diabetes. I don't have diabetes, but I spent my career in broadcasting and that is how you get the podcast
earlier this summer. As many of you probably remember, Walmart announced its new agreement with Novo Nordisk it is selling the same insulin that they make under the Walmart brand. So it's called ReliOn Novolog. And it's sold at Walmart and at Sam's clubs. This is not the older $25 so called Walmart insulin that includes older versions such as regular and NPH, which can be used safely if you know what you're doing very rarely used in pumps, and very rarely prescribed as a matter of routine. They're not the standard of care for modern day diabetes. But people do certainly use what many of you refer to as Walmart insulin, they still do use regular and NPH. But the vast majority of people who probably listen to this podcast and are regularly seeing an endocrinologist and have been diagnosed, let's say within the last 30 years are probably using novolog, humalog, And the the newer, you know, faster acting insulins. So because Walmart is selling novolog, we might have to change what we mean when we say Walmart, insulin.
And now that the dust has settled a bit, I thought it would be a good idea to find out how it's going and what it really means for people who use insulin. Unfortunately, I don't think it's changed the marketplace a lot. What it did prove, at least to me is that the retail price of insulin with or without insurance is as arbitrary, as most of us suspected. I mean, pardon my cynicism here. I do appreciate the folks from Walmart coming on to talk about this. And I appreciate that they're doing something I'm sure this new pricing will help some it is $73 though for a vial when the estimated cost of producing that vial is maybe four to $6. So it is still quite high. And that is the cash price. By the way with insurance as you'll hear it is likely a lot lower. So going in, please know and most of you already know this bottom line, ask your doctor, Ask your pharmacist, make sure you are getting the insulin that costs the least for you according to whatever plan you have.
There are so many hoops to jump through to ensure this if you don't have great insurance, you may want to go to get insulin.org that's a clearinghouse put on by beyond type one. And all it really does is bring all the coupon programs together. So it's one place where you can find out what you can get get insulin.org I will link that up in the show notes. We used it because as you'll hear in the interview, and I've shared this before, our current insurance does not cover the insulin that my son uses and wants to keep using and we needed to use coupons for that it did help us if you're struggling if you can't find these resources post in the Diabetes Connections Facebook group, you're more than welcome. We have a lot of great people who can help you figure this out. But you know, do what you need to do. as frustrating as it may be. Don't ration your insulin if you if you can possibly help it. I know that sounds ridiculous to even say that. But look, one in four people in this country do ration their insulin. So maybe there's something that we can do to kind of help you. As I said, jump through those hoops.
Alright, Michael Burke, Director of brand pharmacy merchandising in just a moment, but first Diabetes Connections is brought to you by Dario health and we first noticed Dario a couple of years ago at a conference, Benny thought being able to turn your smartphone into a meter was pretty amazing. And I'm excited to tell you that Dario offers even more now. The Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you With coaching when and how you need it and personalized reports based on your activity, find out more, go to my dario.com forward slash diabetes dash connections.
Michael, thanks for joining me a lot of information to get through and I appreciate you coming on. Thank you so much for having me. Let's just start with kind of an explanation, if you wouldn't mind, take us through what Walmart is doing here, what's the new version of insulin that Walmart is selling,
Michael Burke 5:28
we have recently launched analog insulins we can get into here in a second, the difference there, but it's an extension of our current line of insulin. So the insulin that we've had at Walmart for some time now is the human insulin, or the novolin products, our extension and new launch now is an analogue insulin, which are the newest version of fast acting insulin, and can help better regulate someone's blood glucose levels, very excited that we were able to get into this. It's been a large topic in the industry for a while on why we were just at human insulin as a private brand offering, and what more we could do so very excited that we got into the analog insulin, as it is the insulin to be used for a type one diabetic, and preferred in most cases and type twos.
Stacey Simms 6:19
Can you share a little bit about what happened here? Because this isn't something that Walmart could just do, right? This is a version of Novolog. I mean, this is an agreement with Novo Nordisk, can you kind of take us through what the process?
Michael Burke 6:30
Yeah, so we have had a long standing relationship with novo, they are the manufacturer of our human insulin, the Novolin ReliOn products that we've had on the market. And so with the changes of recent in the industry and a real focus, I'd say from across the board, from legislation to patient advocacy to patients, manufacturers, to pharmacies, to prescribers. There's been a large focus over the last two years on what more can be done in the space and so it allowed us an opportunity to work with novo and expand what we already had on the market is a private brand offering and bring a new private brand and new ReliOn offering in the Nova log in Nova log mix, both in a flex 10 and vile and offer a lower cost option for patients who had struggled with affordability to this point.
Stacey Simms 7:24
This is a branded insulin so you get ReliOn a brand novolog only at Walmart, am I Is that right? Is that how it works?
Michael Burke 7:32
Yes. So like everything healthcare, it's got to be confusing, right. So novolog is the branded name. That is the FDA filed and and trademarked products from Novo Nordisk. What we have done is partnered with Novo Nordisk to launch a ReliOn novolog and to ReliOn novolog MCs, same product manufactured by Novo Nordisk manufactured here actually in the US and comes off the same production lines is the same insulin, the difference being that it is branded with Walmart's private brand of ReliOn which enables us to bring that in house to self distribute to our stores help support our customers. So it offers us the opportunity to cut out some of the middlemen lower the cost, but still the same great product manufactured by Novo Nordisk still the same as their branded Nova log and Nova log mixes, just with a private brand twist from Walmart.
Stacey Simms 8:33
So this was announced in late June, as I remember, how has it been? Is it out now are people able to purchase it? What what's the roll up in like
Michael Burke 8:42
it is. So we started with the novolog vials and the Nova logs mix in our ReliOn brand, or sorry, the Nova log vials and the Nova log flex pins in our private brand of ReliOn. And then this last month, we were able to launch the mix in ReliOn flex pins and vials. So the regular novolog has been out a little bit longer. We're seeing really good traction, cut wonderful feedback from from patients, prescribers, various members of the industry, and has been really good reaction to this point, have a real sense of pride for us at Walmart to hear the great feedback. Our pharmacists and pharmacy teams are very excited about the product and how they can help support patients. We've heard lots of testimonials on where we've been able to save patients money and where patients were able to come to us and afford their insulin and not make different choices. And so it's for us been it's been wonderful since launch. Now. We're gonna keep that momentum going and make sure that we're reaching as many patients as we can and providing as much value and access as we possibly can in the insulin space.
Stacey Simms 9:50
It's some interesting questions for my listeners, if I could bring them to you. And the first one was, is there a limit to the amount that you can purchase per person per A month,
Michael Burke 10:00
there is not so these products, the newest launch the lion novolog and ReliOn Nova log MCs are prescription required. So as long as there's a valid prescription, there is no minimum or maximum that a patient can get dispensed at a time, a little bit different than our human insulin, which did have some limits on how much you could purchase at a time without a prescription, just due to some varying risks in an inability to keep in stock.
Stacey Simms 10:29
You've mentioned the mix a couple times what is the mix
Michael Burke 10:32
of it's a 7030 mix of analog insulin. So it's a fast and intermediate acting. And so for some patients, it is a better way to manage some of their peaks and valleys is to use an analog mixed insulin rather than just a single type of analog insulin and fast acting.
Stacey Simms 10:52
Is there is that again, pardon my ignorance is there isn't there a 7030 human insulin This is different or this is
Michael Burke 10:57
there is Yes, okay, insulin is a bit of a rabbit hole in the various types of insulin There are also mixes within them. So there are also long acting insulins. And there's some mixes in long acting or the parental insulin, their seeming insulin, which were the original insulins on the market that have mixes as well, and the analog insulin had mixes. And it's really just helped provide variety for patients and prescribers, that may not be seeing the right results with a single insulin, sometimes mix. Depending on what type of mix it is, is more beneficial and in lowering blood glucose, maintain the proper levels. Sometimes it's helpful in some patients without peaks and valleys. And I struggle with that
Stacey Simms 11:41
I just didn't realize it's my ignorance, I didn't realize that there was a 7030 analog. Alright, another question from the group. And another question, are they going to encourage providers to prescribe? Or is this solely an option for people with high deductible plans slash no insurance.
Michael Burke 11:57
So wherever there was a prescription, we will process whatever type of insurance where our goal is to have the lowest cost for a patient we possibly can. So may that be on our private brand insulin Navy on a brand or a different branded insulin? Every time a prescription comes to the pharmacy, we we do our best to make sure that we're going to give the lowest price. So our branded insulin continue to have some coverage today, our private brand does as well. So best opportunities is for patients to work with our pharmacy teams and make sure that they're getting the right Insulet at the lowest cost possible for them.
Stacey Simms 12:30
So I'm going to ask you a question you may not be able to answer and that's fine. But for clarification, so my son, our insurance currently covers novolog and doesn't like he doesn't prefer it. So if I were to get a prescription and go to Walmart, would my doctor have to write it for novolog? Would they have to write it for ReliOn novolog? Would I have to know could I possibly be saving more money if my doctor knew about ReliOn or does the pharmacist look at this at Walmart and say oh you want Nova log but it's gonna cost less if you use the ReliOn version
right back to Michael answering my question but first Diabetes Connections is brought to you by g Vogue hypo pen and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're gonna pass out there are lots of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar Jeeva hypo pen, it's the first auto injector to treat very low blood sugar tchibo kaipa pen is pre mixed and ready to go with no visible needle before Jeeva people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand, find out more go to Diabetes connections.com and click on the G book logo chivo shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash risk. Now back to Michael Burke answering my question about how much the pharmacist can do for you if you bring a regular old Nova log prescription to Walmart.
Michael Burke 14:10
Yes, for a no blog prescription or ReliOn Nova log private brand is interchangeable by the pharmacy or by the pharmacist. So a patient who has a current Nova log prescription or pharmacist can check to see if our private brands through insurance or other means would be a lower cost for that patient and can do that interchange themselves for those products so just know belong to our private brand over log. If a patient has a prescription for a another type of analog insulin that is not interchangeable with our private brand insulin. The pharmacist can verify insurance coverage for the patient and work with the prescriber on if it's appropriate to switch to private branded Nova log or to remain on the inside there. On today, so we can interchange with the novolog branded products themselves. But for other products, there would be a conversation between the pharmacist patients and prescriber to make sure they're getting the right insulin at the best cost for them.
Stacey Simms 15:15
Mike, you're going to have to forgive me as we move forward, we're going to start moving into more of a cynical part of the questions here, because as you've already alluded to problems is the rabbit hole. And we know I mentioned Nova log and human log, I mentioned that our insurance doesn't like human log to the point where and I've shared this story in the show, my son has done really well with it for many years. So when we changed insurance, I did not want to change insulins. So we took a it took a long time and some fighting, but I was able to use the coupons for human log, and we get human log for about $35 a month for all of the insulin that my son needs, which would be less, I believe, then if I were to use my insurance coverage, and get novolog or ReliOn at Walmart, I still feel like even though this will save some people some money, it just kind of feels like we're moving pieces around on the board. I guess my question would be for Walmart is how did you arrive at this price? Did you have to do you know? Did you have to set it a certain way to get the deal with novolog? This is gonna sound terrible. Do you throw darts at a board? I mean, who does for some people, it's going to be more expensive than what they're paying now. And I get some people will save money. But how did you come up with the price.
Michael Burke 16:29
So for us, we are one piece of the equation. As we've mentioned, healthcare is very complicated, especially the financial flows of healthcare. And so Walmart is one part of the financial equation as the dispensing pharmacy. We also have a distribution network and other assets that we utilize within Walmart. And so what we have done is taken all of our assets, tried to remove as many of the middlemen as possible. And put all of that back into the customer savings, customer pocket. We can't control all the levers there are in healthcare, but where we can we put it right back into the customers price, we truly mean it and Walmart and especially Walmart, health and wellness of the lives better and save money, right? Save money live betters Walmart from from the core, that's the only way that we could do so was was to take where we could remove some of the excess costs, and put it into that cash price, very complicated on the back end of who's making what decisions on formulary, and additional savings and eligibility for manufacturer discounts and coupons and on down the line. We can't control all of those. But what we can do is continue to take whatever we can out of that cost that inflation cost in the insulin and put it right back in to the cash price. And in that effort, hope to continue to drive down the overall cost of insulin to the marketplace.
Stacey Simms 18:06
Can you share? Is this an exclusive contract with Walmart? This was another question from one of my listeners, do you In other words, could other providers like Express Scripts? Or even Amazon You know, one of these folks that's getting into the pharmaceutical, you know, medication supply side? Could this be a first step toward other people doing something similar or is this exclusive,
Michael Burke 18:27
so the ReliOn private brand and exclusive for Walmart, that is our our trademark brand at Walmart for insulin and diabetic supplies products. So others couldn't utilize our ReliOn but we hope that this is part of other stepping up and and also looking to see how they can impact the space, how they can drive down costs. For us, it would be a great win if there was competition in the space. And we started to see insulin prices across the board come down because the competitive market only benefits the patients. And that's what we're looking to do. So we'd be happy if others were able to get in the game and figure out different ways to drive down costs for customers. Because at the end of the day, if there's an affordability issue, we won't be able to curb the growth of diabetes.
Stacey Simms 19:17
I'm curious, again, this this might be a ridiculous question. But with your answer in mind, do you have an agreement with novo in terms of how low you could get that cost? Because I mean, let's be honest, if you knock the cost down, it's set. What is it? 7288 per glass vial or 8588 for five flex pens, if you could knock that down to $35. I mean, you basically corner the market, no coupons or anything like that. Was that even discussed?
Michael Burke 19:44
Our focus is always on? How can we drive the lowest cost lowest price possible? We'll continue to focus on that. Like I said, there's only so many of the financial levers in healthcare that we own at Walmart and so we will continue to do our part To to take out everything we can from our end to make sure we're driving down prices and costs. But we only own so many of the levers. So we continue to look to novo and other partners to help us continue to drive those prices down
Stacey Simms 20:15
with the pricing that I just mentioned a moment ago. Are any coupons accepted for that? If people have novolog coupons? Are they good for ReliOn novolog? Or is that something completely separate?
Michael Burke 20:26
Yeah, that's completely separate. That's for qualified programs for their branded product. We don't have those Today, on our private brand product, what we continue to look at is, is how do we take the cost of those programs and put it right back into our pricing, because every day transparent, low prices, what we're looking for, as you mentioned earlier, the different insurance coverage, and copay assistance and discount cards and manufacturer discounts on down the line just makes healthcare so complicated for the average patient. And so our goal is to not continue to build those additional steps and needs and trapdoors and not put that pressure on our patients to need to go out and hunt and find those. But rather continue to put that right back into our cash price and make sure that we're offering as low as we can price on these insulins, in a transparent way, that that will continue to be our focus, just making this more complicated isn't going to help patients with affordability, access, continue to simplify a very complicated healthcare arena, especially insulin is to the benefit of all of our partners.
Stacey Simms 21:44
Just to be clear, the end, the prices that I mentioned, is that someone who doesn't have insurance, that's just a cash price.
Michael Burke 21:51
Yes, that is that is our cash price. And that is the starting price. So if a patient has insurance, or different type of coverage, that we will process and see their eligibility and what their coverage will do, and where that will bring down the price. We're seeing pretty good coverage so far since launch across the board. But you know that that continues to change. And as you said, there are different formularies and different pricing tiers out there. So that what we say is the highest you're going to pay for that box and vile and those prices, but we'll try to do everything we can to run insurance and check for every possible way to save money from those prices.
Stacey Simms 22:32
Here's another question from my listeners, are there any plans to offer the in pen cartridges, which is a different product, then no, then flex pens,
Michael Burke 22:41
we don't have that today, we continue to look in the space for for whatever we can can continue to offer and do but today, we do not have that as a as a product offering
Stacey Simms 22:51
any plans to do this with other insulins, you know, long acting or different brands or humalog or Tresiba. You know any other types of insulins that are out there,
Michael Burke 23:01
we continue to look for opportunities, kind of across the board, from our generic team to our specialty team to the branded team that I'm on, to figure out what are the best ways to save our customers money and make sure that they can be adherent to their medications. So I can say that we'll continue to look at opportunities. Diabetes is obviously a growing issue in the United States. It continues to create barriers for our customers, our patients, our families. So we'll continue to invest time and effort in the space and make sure we're doing everything we can to do our part to help increase access, decreased costs and support our patients in their journey and diabetes.
Stacey Simms 23:42
I appreciate you taking on my questions. I mean, I know you hear the frustration in my voice and my listeners comments and questions, because it just seems and I can't say this is Walmart's responsibility. But it just seems like we've been told for years and years that you know, the price is because of research and, you know, development and and then to just suddenly say, Well, you know what, we don't need to sell it for $300. We can sell it for 7288. It kind of seems absurd from where we all sit. And I know it's complicated. And I guess there's no question here, Mike, but I could just say to you, please, as you move forward, I know everybody needs to make money. I know that's how the system is. But if Walmart really wants to, you know, improve lives, improve access, please keep pushing to lower the prices, because it does make a difference. One in four Americans is rationing insulin right now. And while this helps, it also points out how frankly broken the insulin pricing system is. So I appreciate you doing what you're doing. And I appreciate you taking these questions on. And really just thanks for listening to me talk about that as well.
Michael Burke 24:44
Yeah, I appreciate your time. I appreciate you having me on. Like you said, we're here as Walmart to continue to do our part. We're invested in making our communities healthier, both from a customer standpoint and employee standpoint, community standpoint. So thanks for having me. I'm glad to talk to you I understand the frustration. I've lived in this world for a long time. So I've lived in the frustration, I feel it. I'm a pharmacist myself. And this has been a very complicated space that, quite frankly, we'd love to add some light to and make easier, make more affordable and continue to drive better outcomes for patients.
Stacey Simms 25:22
Mike, thank you so much.
Michael Burke 25:23
Appreciate you having me on and tell you we'll continue to do our part.
Announcer 25:33
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 25:38
More information at Diabetes connections.com. Of course, there's a transcript along with each episode now. And I will link up more information about the Walmart program. I'm also going to link up a column I thought was fantastic. From the la times by David Lazarus. He wrote all about this earlier in the summer, when it first came out, he lives with type one, he gets it. And it's an interesting look at the marketplace and what he thinks with Walmart entering what he thinks it shows about the price of insulin. He's a great writer, I'd love to have on the show sometime. But I'll link that up.
Alright. Diabetes Connections is brought to you by Dexcom. And you know, it is hard to remember what things were like before we started using Dexcom. I mean, I really haven't forgotten, but I guess what I mean, it is so different. Now, when Benny was a toddler, we were doing something like 10 finger sticks a day. Even when he got older, we still did at least six to eight every day more when he wasn't feeling well or something was off. But with each iteration of Dexcom. We've done fewer and fewer sticks. The latest generation the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about these little worn out fingertips makes me so glad that Dexcom has helped us come so far. It's an incredible tool, and Benny's fingertips are healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. learn more, go to Diabetes connections.com and click on the Dexcom logo.
Before I let you go, a couple of housekeeping things please send me your dear Dr. Banting audio if you have not heard me talk about this, I am collecting from you what you would say to Dr. Frederick Banting, the man credited with the discovery of insulin. Of course, there were many people helping him. But the Banting House Museum has an exhibit of print, dear Dr. Banting letters, I thought it'd be really fun to do an audio version. So let me know. I'm gonna link it up in the show notes. There's a whole blog post on Diabetes connections.com, about how to do it's very easy, just use your phone, but you got to get those three by the end of September.
And looking ahead, I'm doing a little bit of where are we going because we're starting to go places again, a little bit here. And there. I've got some virtual and some in person stuff coming up Delta permitting. So the virtual stuff I'm really excited next Tuesday. So if you're listening as this goes live, it was Tuesday, the 21st my JDRF local, but I think this is open to everybody nationally, and I'll put this in the Facebook group JDRF is starting something for older people with type one and I say older very judiciously because I believe I'm in this group with not with the diabetes, but in the older. You know, basically there's a lot of issues that people are facing as they hit, you know, middle age and older age. And it's not just Medicare. I mean, you know, but there's a lot of questions people with type one may have. And interestingly, I do a lot of research for this show my listenership very dedicated older folks. Again, I'm in this category now as I'm turning 50 in the month of October, but we're interested in issues pertaining to type one in their health as they get older. So I'm doing all of this to say next Tuesday, the 21st jdrf has a an online event that you can join in, I'm going to be doing a little bit of my in the news for this group. But it's going to be news that I have curated that is all to an older crowd. And I'm probably going to do it for 6065. And up I think that the the insurance, you know, cut off there makes perfect sense to try to find things that work for that group. But there is a Facebook group, I believe that they started as well. So more info on that.
And then later in October, we've got the shep podcasts conference out in Scottsdale, Arizona. That's the other group that I take part in quite a bit. I'm helping them out. It's women podcasters. Obviously, big group really excited to hang out with them. And we'll see in terms of you know how many in person events happen in the weeks and months to come? Hopefully they start picking up again, but lots of virtual stuff going on as well. So if you want me to come speak to your group online or in person, please let me know. I'm always excited to do that. And we gear it to you know, whoever I'm talking to parents or adults with type one, whatever you need.
Thank you, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. We've got in the news live on Facebook every Wednesday at 4:30pm. Eastern and then that becomes the in the news episode. You can listen to right here every Friday. So we'll see you back here soon. Until then. Be kind to yourself.
Benny 29:59
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
It's our annual game show! Based on NPR's Wait Wait... Don't Tell Me, Stacey invites panelists to try their hand at diabetes trivia, bluff the listener and limericks. This was first presented at the Friends for Life Virtual Winter conference where the audience played along via online BINGO.
Watch the show on our YouTube Channel
Special thanks to our panelists: Lauren Lanning, Justin Masterson and Chelcie RIce!
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
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Episode transcript (beta version - check back for proof read version)
Stacey Simms 0:00
Diabetes Connections is brought to you by Jeeva Chi popin the first premixed auto injector for very low blood sugar, and by dexcom take control of your diabetes and live life to the fullest with dexcom
Announcer 0:16
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:22
Welcome back to another week of the show. I am your host, Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection, a different sort of episode this week, because this is one of our game shows. I do these periodically for live audiences, usually at conferences and that sort of thing. And this year, we have kind of like everybody repurposed things for virtual. And so this time around, it was friends for life and their virtual winter conference. A couple of quick things. If you prefer to watch this is on my YouTube channel for the show. It's just Diabetes Connections over on YouTube, I will put a direct link in the show notes. And while it is kind of fun to watch these things, you don't really miss that much just by listening. In the trivia section. I will say there are three questions that are show and tell. But I do describe what the guests are seeing. I think you'll easily get it even if you're just listening. As always contestants are selected at random from the Facebook group from Diabetes Connections, the group, so make sure to join me over there because we do this now a couple of times a year, especially with everything virtual and people on zoom. It's so much easier to record these than in the past. I still really love doing it live and I hope to do that someday again soon. But in the meantime on with the show, recorded in November, and played at friends for life the first weekend of December 2020. Welcome everybody to wait, wait, don't poke me the diabetes Game Show. If you have heard the NPR version of Wait, wait, don't tell me. This is our version. So we apologize to NPR in advance. In this session, you are going to meet some terrific people living with diabetes or who have diabetes in their families who have gone above and beyond to help the community and we're going to have a laugh or two, probably at their expense. Wait, wait, don't poke me. We'll feature trivia bluff the listener and much more. But before we get to the games, let's get to our panelists. We'll do a quick intro and then we will get started. So first let me bring in Justin Masterson. Justin Hi, I first met Justin, when we were talking on the podcast about his walk a mile cards and exercise and empathy, a teaching tool to help those with diabetes understand a little bit about what people with diabetes go through every day. Justin's daughter was diagnosed with type one when she was five. She was diagnosed on her birthday. Yeah, he is in charge of strategy at seek a market research firm. Fell old is your daughter now just
Justin Masterson 2:55
she just turned 11. So her birthday was just a few days ago,
Stacey Simms 2:58
when she was really diagnosed on her birthday.
Justin Masterson 3:00
it well. She fell on her birthday, but we got there the next morning. So it was technically the day after but she's now been six years and and living very well.
Stacey Simms 3:11
That's awesome. All right. Well, we will hear more from you for sure. I want to bring in Lauren laning and Lauren is a familiar name and face to many people and friends for life. She's been there usually at the first timers since the very first ffl in 2000. She used to run registration at the elementary program now she leads the moms and the first timers. Lauren's daughter Monica was diagnosed in 96. And she has been I can say first and amazing at these muffle meetups. We've been doing boring. The muffled meetups have been awesome. Thank you. Oh, I
Lauren Lanning 3:45
love them. It's great. It's great being able to connect with the fit.
Stacey Simms 3:50
Yeah, so your daughter was diagnosed in the 90s. How was she doing now?
Lauren Lanning 3:54
She is doing great. She's 20 she'll be 27 in a couple weeks. And she's at p in PA school at Stanford right now. Gotta brag. Wow.
Stacey Simms 4:04
Yeah, go for it. That's awesome. And rounding out our panel is Chelsea rice. I Chelsea, he was diagnosed with type one as an adult at the age of 25. He's been part of the diabetes community since I can remember. Chelsea is a stand up comedian who doesn't just talk about diabetes, of course, but he has been honored by diabetes forecast Magazine as one of their people to know and he has brought much needed education and humor to groups like healthy voices and Chelsea, your you've really found a talent this year for making soap. I've been seeing all this beautiful soap.
Chelcie Rice 4:37
Yeah. I've been locked in the house for quite some time. And so, you know, you get stuck with the phone in your hand and you get started looking at YouTube is like, you know, you take a shower, like you make stuff. So it's I mean, and that was like I and it's something that I that I do, if I see something that I get interested in Figure out. How do you make it? So that's how I even started. That's how I started baking. barbecuing. All this stuff is just like I just, you know, try to figure out okay, how do I do this? And so it just, I just picked it up and is is really kind of easy. And the funny thing is when I started just posting pictures, I was like, hey, how can I buy something like you know what I put in his name? I'd be like, you don't even know me.
Stacey Simms 5:29
The soap looks gorgeous knows. I actually thought it was I thought it was food when you were first.
Chelcie Rice 5:33
Yeah, no. That's the funny thing about soap is like, I mean, people talk about it. Okay, I've joined some soap groups on Facebook.
Justin Masterson 5:45
That is such a quarantine thing to say. Yeah, join some soap groups on
Chelcie Rice 5:48
Facebook like and that's the thing is like people were saying like, Okay, well, you know, people are quarantine now they're at home and they learn how to cook more than like baking sourdough. Random like, wash your hands with sourdough. I can make them fortune over this. So
Stacey Simms 6:03
all right, well, as we move on here, you are each playing for a contestant who has been selected by random from the Diabetes Connections Facebook group. So let me tell you, who you are playing with and for and we thank them very much. So Michelle Briggs is playing with Justin. All right, Michelle. Yeah, fi Comstock is partnered with Chelsea. And Caitlyn states is with Lauren. So no pressure. But these very loyal wonderful podcast listeners are counting on you. Alright, Caitlin.
Unknown Speaker 6:40
money involved? Am I gonna, ya
Stacey Simms 6:43
know, hey, look, it's all virtual be tough to get Oh, well, yeah,
Unknown Speaker 6:45
you know.
Stacey Simms 6:46
So we're gonna start with trivia. And each of you has five questions. I'm going to know we'll take one person at a time we'll go through the questions. Don't chime in with the answers. But feel free to chime in if you have a comment or something you'd like to add. Or if you have personal experience, these are all diabetes community questions. They're not all about diabetes, which will become clear and write it Don't worry, don't worry, it's not, you're not going to be judged. I also do have some show Intel because we're at home in my office. So I thought why not? pull some stuff off the shelves and ask you about it. Alright, so we're gonna start with Justin. Everybody ready? I would stare at the clock if I had one. But hopefully we'll just we'll we'll just let you know when you're at a time. All right. Our first question comes from the field of sports. NFL tight end Mike Moore. I'm already messing up. NFL tight and Mark Andrews has type one. And he plays for the Ravens. He keeps a strict diet around games reportedly eating for eggs before every game and the same kind of sandwich the day he plays. And the night before. This sandwich is a staple of school kids. What is it?
Unknown Speaker 7:57
Oh, man.
Justin Masterson 8:00
My school. We ate a lot of chicken fried steak and salsbury steak. I don't think either of those qualify as sandwiches. I'm going to say it's the school kid. It's going to be a pb&j. I mean what's better than a pb&j?
Stacey Simms 8:16
It is a PB and J and he says a lot of peanut butter. Not a lot of jelly. He prefers the complex carbs that come in. But I would think that the chicken fried steak is a complex something. Yeah.
Unknown Speaker 8:30
It's complex.
Chelcie Rice 8:32
Complex. There's so many complex things that go in it. Yep, yep, yep.
Stacey Simms 8:36
All right. Excellent. All right. Next question. There is an eternal flame at Banting house, the Canadian National historical site where Sir Frederick Banting woke up in the middle of the night with the idea that led to the discovery of insulin. The flame is meant to burn until there is a cure for diabetes. It was lit by the Queen Mother. In what year? And this is multiple choice. Wow. 1979 1989 or 1999? I don't think this was featured on the crown. So
Justin Masterson 9:07
it took it took him like 50 years to get this flame idea going.
Unknown Speaker 9:11
Oh yeah, well, at least Yeah.
Justin Masterson 9:15
I feel like it would be I feel like it would be in the 70s that feels like it was enough time to get the Queen Mother on board. I'm going to say 1979
Stacey Simms 9:23
incorrect. At 88 which I think is weird. I would have thought it was like 1959 but
Chelcie Rice 9:32
okay, was all the rage on MTV. So
Stacey Simms 9:36
I just finally figured out all the Elisabeth's in the royal family because of the crown the Queen Mother and the Queen girl anyway. Okay. All right. This is a an entertainment question for you. So brec bassinger is the young actress who stars in the CW hit show star girl actually got great reviews. It's been renewed for a second season. She lives with type one and her previous series was nickelodeons Bella and the Bulldogs and your daughter might have watched this. Maybe not. What sport did the Bulldogs play this whole show centered around this team? Was it football, baseball or soccer?
Justin Masterson 10:16
Sometimes my thinking sounds a lot like googling. Now, I'm gonna say it was a soccer team. It had to be the Bulldogs soccer game with
Stacey Simms 10:31
the quarterback. She was the quarterback.
Justin Masterson 10:36
Michelle, I'll send you something nice in the mail. I'm just sorry.
Stacey Simms 10:40
Well, there's a lot of game to go. There's a lot of Don't worry, don't worry. All right. Um, here's one. You know, I, I gave this answer away in the introduction. I don't know how well everybody was listening. I do this sometimes. Alright, here's the question. How old is the friends for life conference? I mean, what year of the conference? Is this year's 2020? lorincz.
Unknown Speaker 11:07
Don't say any. Okay.
Justin Masterson 11:10
1999. How about that?
Stacey Simms 11:15
Well, I'm gonna give it to you. Because it is the 21st year, but it started in 2000. Right. All right. But we'll give it to you. We'll give it to you. That was on the line that was on the line. Okay. And your last trivia question, or this is a show and tell. I hope I don't get in trouble for this. We love all our sponsors. Okay. In in 2018. I don't know how well you can see this. Yeah, in 2018. Can you see this? Okay. accucheck had a diabetes awareness campaign where they sent out these hands, promoted by country singer, Ben NRW. The idea was that you'd make the symbol, right. And you would upload a photo to your social media platform with this hashtag. And then their parent company would donate if they would donate a buck to diabetes, education and awareness. So here's the symbol. What was the hashtag? Was it give a book about diabetes, Buck off diabetes or go buck diabetes?
Justin Masterson 12:16
I can't believe any of those are true.
Unknown Speaker 12:19
I'm gonna read it again.
Stacey Simms 12:25
All right, we look at the answer in just a moment. What do you think it is? But first, Diabetes Connections is brought to you by Jeeva Kibo pen had almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's what tchibo Kupo pen comes in. Chibok is the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it? You pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the G book logo. g Vokes shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Chico glucagon.com slash risk. Now back to the game and Justin is trying to guess the buck hashtag
Justin Masterson 13:18
give a buck for diabetes buck off that diabetes or go buck
Stacey Simms 13:24
go buck diabetes.
Unknown Speaker 13:25
Oh my gosh.
Justin Masterson 13:29
I'm gonna say it was a buck off. Oh, hey, if those guys ever need some marketing consulting, tell them to give me a call. I think they might be on the wrong track from well,
Unknown Speaker 13:43
less.
Stacey Simms 13:43
You do Chelsea?
Chelcie Rice 13:44
Yeah, I do remember that when I remember seeing is like are they really going with this one? That was
Stacey Simms 13:51
there. Remember that at all? Ben rule. It wasn't it was not too long ago. It was 2018. He was on the Today Show or one of the morning shows. And it was it was really cute. I think they had a bull riding thing. I mean, it was really cute. Except for the part that was alright, you did great.
Chelcie Rice 14:10
I gotta say, though, when you first pull that out. I thought that was a flying finger of fate from laughing in Asia, but yeah. Which finger to show first it getting easy. We don't want to give it away.
Stacey Simms 14:31
All right. So Justin, thank you. Standby. We're gonna move on to Lauren. Now for the other trivia questions. And we're starting with technology. Right this year Insulet changed the name of their hybrid closed loop system from Omni pot horizon to something else. Do you know what they changed it to?
Unknown Speaker 14:51
Ah,
Unknown Speaker 14:54
no, I don't it's Oh, I'm so bad. No, no,
Stacey Simms 14:59
it's Omni. Hi.
Lauren Lanning 15:03
I can't remember no go.
Stacey Simms 15:06
Sorry, Caitlin. Anybody? No Omnipod five. I don't don't ask me what coober Omnipod five man,
Unknown Speaker 15:15
yet Anyone else? No,
Unknown Speaker 15:17
no.
Justin Masterson 15:19
I know about the Omnipod five as a thing. It just never occurred to me you would change from horizon to five. It feels like a downgrade and
Stacey Simms 15:26
it's Omnipod five powered by horizon.
Unknown Speaker 15:29
Oh god.
Unknown Speaker 15:30
I don't know, either. Okay.
Stacey Simms 15:33
Okay, so this one is a little silly, but I enjoyed putting this one together. Major League ballplayer Adam Duvall was diagnosed in his early 20s. He's had a great season with the Atlanta Braves. But in the minors, he suited up with the August green jackets, which is just a great name. What is the mascot of the minor league baseball team? Augusta green jackets. I'll give you three choices because this really has nothing to do with diabetes, but I thought it was funny. Is it an anthropomorphic green jacket? Like you know the Masters little green jacket? Is it a fierce green insect? Or is it a little green golf caddy?
Lauren Lanning 16:17
I'm going with the answer. Look for thick,
Stacey Simms 16:21
green jacket. green jacket that looks like a person. Yeah, no, it's a green insect. It's the like a yellow jacket. jacket. It's got a little stinger. It's very cute. It's very cute. I had nothing to ask about Adam Duvall. Sorry. All right. Here's a here's another one. You might know this one. Eric church, just one Entertainer of the Year at the Country Music Awards. I was in attendance a couple of years ago when he gave $1 million to a local jdrf chapter at their Gala. What is his connection to diabetes? Is it Oh, go ahead. Oh, we are multiple is his connection. He's got a connection of type one. Is it his mother, his daughter or his wife?
Lauren Lanning 17:08
His mother, it is his mother
Unknown Speaker 17:10
act. Yeah. Excellent. Yes, his
Unknown Speaker 17:12
mom got one. Yay.
Stacey Simms 17:16
All right. Um, diabetes, mine ran an article earlier this year referencing how many potential cgms are in the works currently being studied or built or trademarked? How many CGM continuous glucose monitoring systems Did they say are potentially coming? 1929 or 39?
Lauren Lanning 17:41
I'm going to go with 29
Unknown Speaker 17:45
it's 39. Wow,
Unknown Speaker 17:48
isn't that crazy movie?
Unknown Speaker 17:49
Yeah. 39.
Unknown Speaker 17:53
Hey,
Chelcie Rice 17:56
we really need that many choices.
Stacey Simms 17:58
I don't think we're gonna get that many but let's all throw in.
Chelcie Rice 18:02
I mean, 39 What are we gonna be buying cgms at like, you know, Kroger or something.
Stacey Simms 18:07
People like poor Gary shiner. The You know, there's certified diabetes educator who tries every system he's gonna be covered.
Justin Masterson 18:12
So let's just work through all those you can only wear for the time before it really.
Stacey Simms 18:19
Unfortunately.
Lauren Lanning 18:21
I was on an airplane with him. And I think we were going to London for CWT conference. And i ne had on like, a, he had on a few different pumps testing. Yo, what happens? It was it was interesting. He's
Stacey Simms 18:37
amazing. All right, your last question. Great, Chelsea.
Chelcie Rice 18:41
No, that was just imagining and trying to go through ATF Yoda.
Unknown Speaker 18:45
All that.
Unknown Speaker 18:48
Want to explain.
Stacey Simms 18:52
Just I'm just beeping every two minutes. Don't mind me. Lauren, here is your show Intel. This is one of the Bibles of diabetes care, right? The Pink Panther book. This is the ninth edition from the year 2000. I think we're all very familiar with this. But the question is, when was the Pink Panther book first published? Was it 1970 1980 or 1990? Didn't didn't. Donna
Lauren Lanning 19:25
nine teen. Wait a minute. Wait a minute. It's Monica's Dr. Monica used to go seek Paperchase. Oh, and I used to work for the children's diabetes foundation who publishes the that book. I know this. Ah, it's 1970
Stacey Simms 19:50
it is it is 1970 who knew I didn't know you knew that. That's a
Lauren Lanning 19:55
thing. Do the math because Dana was died. Dana Davis was diagnosed And she's got this old and I have to do the math.
Stacey Simms 20:04
Yeah. And Barbara Davis center of course is where that so
Chelcie Rice 20:07
that free, right? Corning fiberglass marketing?
Lauren Lanning 20:13
No I think they paid oh yeah they paid for all the Pink Panther or no did they? Did they pay for it? There were there were very strict rules around how to use the Pink Panther. Well, and everything has been
Stacey Simms 20:30
okay in my, in my research, I found that the first two monograph printings were in the 60s created by a parent to their basement using an old army press and sent out for free. So kids gather round and learn how we used to use paper. Actual publication of the book was in 1970. But isn't that crazy? They did have to get they continue to renew the agreement to use the Pink Panther. I have asked many times, Lauren, maybe you can find out for us. What the heck does The Pink Panther have to do with anything? Why The Pink Panther and diabetes?
Unknown Speaker 21:06
right why Bart? Burke?
Unknown Speaker 21:09
green jacket?
Unknown Speaker 21:12
The anamorphic.
Stacey Simms 21:15
Yeah, and Okay, so you guys are actually tied at three points apiece Chelsea to take lead.
Unknown Speaker 21:20
Oh, my gosh. All right. You're
Stacey Simms 21:21
ready. Here we go.
Chelcie Rice 21:22
Sure. Let's go for it.
Stacey Simms 21:24
All right, the happy Bob app was released this year. It's been a very big hit. You can use it with your CGM readings, and it tells you encouraging messages. But they have since added a snarky Bob who tells you not so encouraging things, it kind of insults you a little bit. And they've added a female counterpart. What is the name of the female counterpart for happy Bob? Is it Karen, Mary Jane or Bobby?
Justin Masterson 21:48
Please be Karen please be caring.
Chelcie Rice 21:52
Oddly enough, I downloaded this app a few weeks ago. And in fact, it is Karen and I was very surprised that I was like, for real?
Stacey Simms 22:03
It is it's the it's like your annoying, annoying neighbor. I've reached out to them. They're gonna podcast like who comes up with this stuff? I
Justin Masterson 22:10
just love it. Karen would like to speak to your blood glucose manager, please.
Stacey Simms 22:14
Exactly. Chelsea, the in person at the in person friends for life conferences. And they send these out now with the virtual ones as well. They're always colored bracelets. Lauren, back me up here. Right green for people with type one orange for family members. When did they add the bracelets? Was it 2002 2008 or 2012?
Chelcie Rice 22:41
I'm just thinking back to when the whole bracelet thing first dropped because because you know what the lance armstrong thing?
Unknown Speaker 22:51
Oh, yeah. And
Chelcie Rice 22:55
I'm gonna just throw it out there and say 2002
Stacey Simms 22:59
Yes, it was 2002 had nothing to do with Lance Armstrong. Although those rubber bracelets were, you know, probably 90 Gosh, at this point. But the idea was the first couple of years. They you know, they were just trying to start things out. And then they were seeing the kids without their parents around eating. And it was like, well, who has type one and who doesn't have we've got to figure
Lauren Lanning 23:22
and when you see a kid sleeping in the hallway with glucagon or et you let them sleep because he's fired.
Chelcie Rice 23:31
They had to rule out the whole thing like just get into tranquilizer gun into tagging them like to do a wild kingdom.
Stacey Simms 23:40
Didn't my house Anyway, when they were preschool? It's much easier. Alright Chelsea I know you're a big fan of this show. The baby sitters club was a big hit on Netflix. Season Two is coming soon. The characters the character Stacy on the baby sitters club lives with type one of course very popular book series. So at the end of the episode, there were Stacy comes to terms with her diabetes. She asks her parents for a designer diabetes item. What is it? Was it I'll give you choices here. A Gucci fanny pack for pump supplies. A Gucci branded pump clip, or a Gucci cover for her CGM receiver
Chelcie Rice 24:25
shows so much
Stacey Simms 24:28
It's really good. Kids are way too old but we watched it anyway. And it was very good.
Chelcie Rice 24:34
We've been streaming Dexter for the past couple of days for
Stacey Simms 24:38
different different audiences. Yeah,
Justin Masterson 24:40
five is almost no overlap. Like
Stacey Simms 24:43
Mike we're this though. You could see where it could come in handy.
Chelcie Rice 24:47
I was gonna what was the first one you said
Stacey Simms 24:49
a Gucci fanny pack for pump supplies.
Chelcie Rice 24:52
That's what I was gonna go with a fanny pack.
Stacey Simms 24:55
And that is correct. It is a Gucci fanny pack. She does not get it. But she
Justin Masterson 25:01
does bedazzle the heck out of her pump though. And yeah, it's cool because for the rest of the series, you can see her pump like they leave it visible, which I think is really neat.
Stacey Simms 25:10
I think they did a very good job with it. I'm very happy. Yep. All right,
Justin Masterson 25:13
Stacy, did you cry when you saw that episode?
Stacey Simms 25:17
No, I cried. No, I'll tell you when I cried was the other episode when the dad like the dads falling in love and they don't know if they want him like I know cuz I have a boy with diabetes a different
Justin Masterson 25:30
kind of messed up. My daughter was cool as a cucumber and I was just fountains over here. It was a mess. I was
Chelcie Rice 25:37
like, I'm not missing anything.
Stacey Simms 25:43
All right, well, here's another one slightly different angle here. Chelsea. ominous beeping shut down the Forsyth County Courthouse. Not too far from me in North Carolina earlier this year, as law enforcement investigated a possible bomb threat. It turned out to be a diabetes device. What was it? Was it an omni pod discarded in the trash? a defense attorney with a Dexcom or a judge who let their t slim x two insulin pump run out of insulin.
Chelcie Rice 26:17
I was gonna say, what was it that was in the trashcan? You said it was an omni pod. I'm gonna go with that. I'm probably in the trashcan. Because it seems like you know, anybody's going crazy and shutting the place down ahead of in something. Because like, if it was somebody was beeping, they just like get up and run away or something.
Stacey Simms 26:33
Oh, yeah, you are correct. That was and that gave it away with the answers very good to see the deductive reasoning that interestingly, this was the second time in about three years that a North Carolina municipal building was shut down by an army i'd beeping.
Chelcie Rice 26:48
Previously, God walked through the courthouse.
Stacey Simms 26:55
That could happen. All right, our last tell our last show and tell me let me make sure there's nothing that's like, Okay. I'm not my microphone. This is our last show until a pop company had a line of toys like this, each of which was comfortable, sort of on the land or in the water. I think they also had a walrus, they had a penguin they had they would change the stuffed animal every year. The company is no longer in business. Was it? deltec Cosmo, the Animus or a Santee snap?
Chelcie Rice 27:35
vaguely remember this, but I'm thinking is second want to animate?
Stacey Simms 27:41
You are five for five matches? Yes. And Benny, the Bengal tiger. So of course I had to keep because my son's name is Benny.
Chelcie Rice 27:50
What am I Why am I remembering that? For some reason?
Stacey Simms 27:53
I don't know why you remember this thing? It's got to be seven years old. But I don't I mean, atomists went out of business officially in seventh 2017 or 2000.
Chelcie Rice 28:01
I think when we I think when I was at, for instance, that you that was like the last time anybody who's seen animals that I remember after that they just pretty much is like, you know, walked off into the sunset.
Justin Masterson 28:16
And we I remember animus is they went out of business the day after we signed up for an animist pump. Oh, so for my daughter, so she was finally ready to try a pump with tubes on it. And we were like, yeah, we signed up for an animist pump. Yep. And we and we took it home from the clinic and everything and we had just trained on it and they're like animals go out of business. We never took it out of the box.
Stacey Simms 28:37
Wow, I'm so mad at them. We love them so much. And I actually it's a long story, but they're one of the reasons why I was able to come into the diabetes community the way that I did they like my blog and I want to speaking and writing for them. And they had this they had great studies on their hypo hyper minimiser. They were one of the first you know, hybrid closed loops that were coming and then Johnson and Johnson pulled the plug. All right, we are in excellent shape. We have Justin I'm actually keeping score which I usually forget to do. Justin Lauren are tied. Chelsea is in the lead. And now it is time to move on to the bluff the listener portion of our show, and we have a real live contestant with us. Tripp stoner is joining us and Tripp you're on the road. Thanks for thanks for jumping in.
Unknown Speaker 29:22
No worries. I'm near you.
Stacey Simms 29:27
I heard so you're from Atlanta, but you're passing through North Carolina. Um, let me ask you, if you don't mind, tell us a little bit about who you are your connection to diabetes and what's up with your friends for life usually,
Unknown Speaker 29:38
um, I am a type one myself. I do a little bit of blogging here and there. I'm not as passionate as y'all are. But I've been with friends for life now for going on. I think four years. I'm kind of behind the scenes most people don't even know I'm on the staff which is a good thing. I'm just there to help whoever needs help. That's pretty much it.
Stacey Simms 30:03
Awesome. All right bluff the listener section, you have to guess which of our panelists is telling the real story of something that happened in the diabetes community.
Right back to the game in just a moment. But first Diabetes Connections is brought to you by Dexcom. And it is hard to think of something that has changed our diabetes management as much as the share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes. That is the wonderful thing about share and follow as a caregiver, parent, spouse, whatever, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow separate follow app required, learn more, go to Diabetes, Connections comm and click on the Dexcom logo. Now back to the game and we are moving into bluff the listener.
All right, so we're gonna take turns reading here. Our subject this year is diabetes mascots. And they are of course as we've already seen, those adorable furry friends have helped make type one a little less scary for pediatric patients. But honestly they can be a little bit weird. So Chelsea, why don't you go ahead and go first I'm going to give you the floor here let me let me do this. There we go. All right trip can hear us. Chelsea you're gonna read your story. And then after we hear from everybody triple let us know which is the real thing. So go for it. Chelsea. Cool.
Chelcie Rice 31:39
Alrighty, Rufus is the adorable teddy bear that jdrf gives out to newly diagnosed families. But many don't know that the bear with diabetes is named after American Canadian singer Rufus Wainwright. As a child growing up in New York, Wainwright was hospitalized with acute appendicitis. Turns out his best friend Brian was in the same hospital receiving a type 1 diabetes diagnosis. The Wainwright recovered quickly, but Brian had to stay for two weeks. Future singer insisted on visiting every day until his friend came home. Later that year, Brian's mother worked with jdrf to create a toy to help kids learn to do shots through play. By then Wainwright's family had moved to Monterey. Also, she named the bear after him to give the boat give the boys a nice way to remember each other.
Stacey Simms 32:30
Very nice. Okay, so that is our first story trip as you are listening. Keep that in mind. All right, Chelsea, I'm going to switch you out with Justin. You're up Justin, what's your mascot story?
Justin Masterson 32:43
This is a nice follow up story. So after the success of Rufus from jdrf, and Medtronic, Lenny the lion, other diabetes companies decided they needed a mascot to but what animal would appeal to kids and make sense for Omni pod? In the mid 2010, the makers of that system decided to ask their customers Insulet asked kids to come up with not just their mascots name but its species. What kind of animal goes with a tubeless pod type insulin pump. They got some creative submissions such as a dolphin and a puppy named Potter. Get it? PAWD er Potter, Omni pod chose a turtle because they say the shell resembles a pod then because turtles are at home on land and in water just like their system. The trademark for turtle Potter. That's the actual trademark was issued in 2016. And Toby was a central part of omnipods teaching app launch that year. Why is he named Toby? That's only for the turtles to know.
Stacey Simms 33:48
Mm hmm. Justin. Okay. And our third story for a diabetes mascot comes from Lauren take it away.
Lauren Lanning 33:59
Okay, Tandem is the current sponsor of beyond type one snail mail program, which of course has a cute little snail mascot. But the makers of the T slim x two pump have been working on a separate symbol of their own instead of a fluffy friend. They've decided on a bicycle built for two. That's one meaning for the word Tandem, of course, a bicycle with seats and pedals for two riders, one behind the other. Before COVID hit, they were planning to launch this as a stationary attraction at diabetes conferences. The idea was to have fun contests like how far can you and your dad pedal in five minutes? What happens to blood sugars when you hop on the stationary bike? They were also going to have children at the conferences, decorate and even put features like eyes and smiley faces on the bikes to see if it could work as an actual mascot. All right, so
Stacey Simms 34:59
trip. The question is, is the real story? Rufus Wainwright inspiring Rufus, kids picking the turtle for Toby the turtle or tandems bike extravaganza at conferences if it wasn't for COVID
Unknown Speaker 35:19
um, I believe it's going to be Rufus. If I remember the story right. She eventually set up quite a few women's sewing those bears together to hand out to other children at their local Children's Hospital.
Stacey Simms 35:35
Well, Chelsea, was that the real story?
Chelcie Rice 35:41
Let me check your email.
Unknown Speaker 35:46
No, no.
Stacey Simms 35:50
The there's just enough truth in that one. Yes. There was a wonderful mom the kids name was Brian. So I apologize for sticking that in there. But Rufus Wainwright has nothing to do with Rufus the bear Justin had the real story of Toby the the turtle although I've got to say I wish and Tandem for a licensing fee you can have that idea from me for and I wish your idea was your story there was true I love that one.
Justin Masterson 36:18
It does remind me of the the contest that they had to name the the boat and they named it boaty mcboatface. So I think they got a lot better with Toby the turtle they
Stacey Simms 36:33
will chosen for that for fooling everybody.
Chelcie Rice 36:37
They change it to Rufus our freight train Jones.
Unknown Speaker 36:40
Oh, like that
Chelcie Rice 36:41
real wrestling fan out there. You know? Yeah. Old School wrestling, you
Stacey Simms 36:46
know. will trip. Thank you so much. That was a lot of work. I know on your part to join us. But we appreciate you dialing in and making it work. So thank you so much for playing.
Unknown Speaker 36:59
Thank you. Y'all have a good day. It's great to see all of y'all.
Unknown Speaker 37:03
You too safe drive and travel.
Unknown Speaker 37:05
Thank you.
Stacey Simms 37:08
Greet job, everybody. That was funny. All
Justin Masterson 37:12
right. I love these stories. They were really well written.
Stacey Simms 37:15
Good art. Thank you. That's my favorite part of doing this. The hardest part is just coming up with the object after that. It's easy. Yeah. But man, thank you.
Lauren Lanning 37:24
All right. Thank you, OSU. We'll be showing you some royalties on that. How could you not
Stacey Simms 37:28
do that man at the conference? That's
Justin Masterson 37:31
such a great idea.
Stacey Simms 37:33
I'm sure. I'm sure their marketing team has thought of it and dismissed it.
Justin Masterson 37:38
Somehow buck off diabetes got through.
Unknown Speaker 37:41
Yeah.
Chelcie Rice 37:43
Really, really bad ones.
Stacey Simms 37:53
are moments people have got a deadline people? Oh, all right. So finally, we are moving on to our limericks now I will read a Limerick to each of you. If you complete it correctly, you will get an additional point. So the topic here is people with diabetes on reality television. So the the answer and I shouldn't give you too much information here. But I think I'm a terrible Limerick writer. So I will tell you that the answer I'm looking for is the name of the show. All right, so Lauren, we're gonna start with you. I apologize in advance these are really bad. I you know, when I learned that on Wait, wait, don't tell me they have like a guy who works on this all week long. He's I don't know if you're not but he's Yeah, but that's what he does. So forgive me. There we go. All right. Remember these reality shows where people with type one appeared. More in this show could be called the CO ket. And a crowd of contestants. Well met Michael among the poor schmoes who didn't get that rose desert he said no thanks on the bachelorette. Yes on the bachelorette. I know the rose gave it away. But Michael apparently was a contestant with type 1 diabetes on a season of The Bachelor. I think it was 2013 I don't watch that one. All right, Lauren, point for you. Excellent. Chelsea, this one's for you. This show is all over the place. With contestants who rarely embrace. Matt came in first, Leo. Well, he's not worst. It's a long road for
Unknown Speaker 39:37
The Amazing Race. The Amazing Race.
Stacey Simms 39:39
Yes. Dr. NET strand, one that a few seasons back and Leo is currently a contestant. Hopefully by the time this airs, he will still be on the show. And not out of it yet. So and Leo has a really we talked him for the podcast he lives with type one word, exactly type one but he head was born with hyper hyper insulin ism and had to have most of his pancreas removed. And then he lived pretty normally until he was 19 when he developed diabetes, but we all spotted his Dexcom on episode one. And I tracked him down. Got him on the show. All right, Justin, this is for you. Ready? This competition for fame? features cyclones and Rams and some flames. Chris trained round the clock. Got a hug from the rock. We spotted his decks on
Unknown Speaker 40:35
okay, I can do this.
Stacey Simms 40:37
This is probably the hardest one sorry,
Justin Masterson 40:39
the rocks on it. There are flames involved. Uh, the Titan games?
Stacey Simms 40:45
The Titan games? Yeah, the right route. And yes, Chris Rutan competed. Yeah, Season One of the Titans.
Justin Masterson 40:51
I remember that episode. That was like the one that my daughter called me downstairs to show
Stacey Simms 40:55
me and got a big hug from the rock. Yeah, that was very nice. All right. So we have totaled up the points, which which don't matter for pride. Chelsea is the winner. But everybody gets a prize. Everybody gets a prize. It's just
Justin Masterson 41:10
for Michelle, did I come in dead last? And does Michelle somehow get punished for
Unknown Speaker 41:14
no actually tie
Stacey Simms 41:18
it all around. So in summary,
Unknown Speaker 41:23
we have
Stacey Simms 41:25
Caitlyn, coming in for a tie for second with Michelle. And fee and Chelsea are the winners. So congratulate all around but it's really well done. Really, aren't we all winners though? And it comes right down to it.
Justin Masterson 41:44
I'd like to think so. But some of us are technically and more accurately winners. And that's Chelsea.
Stacey Simms 41:48
Well, some of us will find out for winners. If we find out if the show. In the couple of minutes that we have left. Let me just go around and say a thank you. And maybe just give you guys a little bit of a last word. Lauren, you have been amazing keeping the muffles going and everything had friends for life. How's it been for you this year? Are you enjoying it? Is it just more work for you?
Lauren Lanning 42:11
I know i'd love it. I'd love the connection. I didn't think that a online would still have the same feel. But it's great connecting with my muffles every other week and hope everyone can join us.
Stacey Simms 42:26
Excellent. And Justin, um, you know, I can't imagine it's easy doing this quarantine thing you know, as you were with your family and your daughter was one I know it's not easy for any of us. Anything I see a guitar in the background, what are you doing to keep busy?
Justin Masterson 42:39
Yeah, I'm doing a lot of this. A lot of playing music. And I've been one of those folks who has dug into you know, a little bit of cooking and a little bit of fixing the house and I'm not making soap like Chelsea, but I'm doing my very best with what I have. And I'll put in a plug for the dads group. We love being able to run the dads group at friends for life. And if you're not already a part of it, and you're a dad, we'd love to have you I have had some of the most moving experiences of my diabetes journey at the at the men's groups and when amazing questions and amazing learning and then just a lot of camaraderie which I really appreciate.
Stacey Simms 43:19
It is such a gift for all parents to be involved in things like that. It really is a gift for your child's if you're dead thinking about it. You've been reluctant because you know, are your manly man, guys don't do that. Please do that. It's wonderful. Justin, thanks for bringing that up.
Unknown Speaker 43:31
But
Stacey Simms 43:32
Chelsea, where can we buy your soap? I'm not kidding.
Chelcie Rice 43:37
No. I mean, you can follow me on like, what Instagram type one comedian type tip number one comedian, Instagram because I'm always, you know, posting pictures on there because of just for the heck of it. I'm not really you know, trying to sell but I'm right, because I don't have like a business license or anything. And you got to have insurance when you're selling something that you're gonna rub on your body and then cause somebody like to lose, you know, you know, something, they made some organ that they may need something like that. So I'm willing to like you just pay me to ship and I'll send you some soap. It's no big, big whoop.
Stacey Simms 44:13
And I have to ask you, is there anything that you've made? That's been more interesting? I've seen a couple of things that you've called disasters that I still think are beautiful.
Chelcie Rice 44:21
Yeah, I mean, there was one that one of the things that happens when you you mix the lye water into the oil sometimes if you add some additives like fragrances, they react differently. And one that I put in there just like turned it didn't look like cottage cheese. And I thought it was like oh well and so but I put it into the mold anyway and I colored it with a little orange and little yellow. And when I when I when it's solidified it looked like Colby cheese. And so I mean like and the funny thing is they turned out to be really good soap is a really good hand soap. I don't know what to put in it. Oh What you know percentages, but it comes out to this really nice handsoap that doesn't leave your hands all stripped. And I was like, Okay, great. Now I don't know how to do it again. So, memories.
Stacey Simms 45:14
That's a great trick, but I can only do it once. Yeah. All right. Wonderful. Well, as usual, we got off topic of diabetes. But thank you all so much for joining me on this for another edition of Wait, wait, don't poke me. And maybe we'll do it again sometime. But thank you all so much for being here. I hope you enjoyed it and had a couple of laughs
Unknown Speaker 45:33
Thank you.
Lauren Lanning 45:34
It was fun. Thank you.
Unknown Speaker 45:41
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 45:47
I love doing the game show episodes, there's so much fun to put together. I would do it every week, if I had the time. And if I could come up with that much diabetes trivia. Anyway, you can listen to our previous weight weights at Diabetes connections.com there is a very robust search on the website with more than 340 episodes. Now, we really want to make it easy for you to find what you want. So you could just search weight weight or game show this past summer at friends for life. I did a Hollywood Squares because zoom just looked like that to me. So I did Hollywood Squares for the game show but you can find all of that and much more over at Diabetes connections.com Thank you to my editor john Buchanan. So for audio editing solutions, and thank you so much for listening. I'm Stacey Simms. I will see you back here next week. Until then, be kind to yourself.
Benny 46:43
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
This week, the perspective of a diabetes dad. Tom Karlya has become much more than that since his daughter was diagnosed in 1992 and one of his sons in 2009, with many efforts extending through all parts of the diabetes community. But he says it all comes back to family.
Check out Stacey's new book: The World's Worst Diabetes Mom!
We’ll talk to Tom about his story, his efforts with the Diabetes Research Institute – the DRI – his acting career – and much more. Tom is a tireless advocate and if you’ve never heard him speak, we promise you’ll be inspired.
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In Tell Me Something Good – college sports, school scholarships and a young JDRF advocate answers Stacey's questions.
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Episode transcript:
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:21
This is diabetes connections with Stacey Simms.
Stacey Simms 0:26
This week, the perspective of a diabetes dad Tom Karlya has become much more than that since his daughter was diagnosed in 1992. And one of his sons in 2009. With his efforts extending through the community, but he says it all comes back to family.
Tom Karlya 0:45
Communication is the most important thing. And for the for dads to realize, to look for places where you can pick up the ball and run with it, where you can be part of your child's life. Don't let your wife do it. Make yourself part The solution
Stacey Simms 1:01
will talk to Tom about his story, his work with the Diabetes Research Institute, his acting career, and much more. Tom is a tireless advocate and if you've never heard him speak, I promise you'll be inspired in Tell me something good college sports school scholarships, and a young JDRF advocate answers my questions. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I'm so glad to have you along. I am your host, Stacey Simms. We aim to educate and inspire by sharing stories of connection when it comes to type one diabetes. My son was diagnosed just before he turned to 13 years ago. And I know there's an awful lot of stress in all our lives right now. This is a difficult time to say the very least. I'm not going to fill you up with a whole bunch of cliches here, but I do hope That as you're listening, you do know that even if it's online, the diabetes community is there for you. We're here to help. We're here to share stories. Hopefully your local community is banding together. I'll talk about that a little bit later on in the show. But this week's show is not going to be about COVID 19. It is going to be about some inspiration.
You know, with everything that's going on, I thought it would be really nice to have something like this. Tom Karlya and I actually spoke a while ago. And while I was listening back to this interview, like I do all the interviews, it struck me that it sounds a bit like a keynote speech that you would hear at a JDRF summit or another diabetes gathering like friends for life, because all of those conferences have been canceled. I really thought maybe this would make you feel like you're hearing a speaker at a summit. Right? So let's listen to it. Maybe in that vein, and if you're bummed out like I am that those conferences have been canceled. I mean, let's face it, they are for education. They're for learning. They're for resources, but they're also just to get together and see friends, right? You know, maybe this podcast or the Facebook group can be some support for you a place to hang out. So you can always email me Stacey at diabetes, connections calm, or jump into the Facebook group, which is diabetes connections with the group. I
know that diabetes makes us tougher to begin with, right? This is such a great community. And we do know how to help each other out because we do it all the time. Right? I think we're seeing some neighbors come together in the greater community, at least if where I lived, you know, do you need this? And can I go to the grocery store? People with diabetes, have been doing that for a long time. So let's just not stop doing it. Now. As you'll hear Tom say, as he has said for many years, you just don't do nothing. You can do a little something and really help.
And we'll hear from Tom in just a moment. But first diabetes Connections is brought to buy One Drop. And you know, I spoke to the people at One Drop and I was really impressed about how much they get done. Diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need get 24 seven coaching support in your app and unlimited supplies delivered, no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to diabetes, connections comm and click on the One Drop logo.
My guest this week was brought into the diabetes community back in 1992. When his then two year old daughter Kaitlyn was diagnosed one of his other children he has two other sons would be diagnosed 17 years later, but Tom Karlya jumped Writing to see where he and his family could help taking part in early JDRF campaigns, the Diabetes Research Institute and children with diabetes. I think Tom vo would tell you the best thing about him right now is that he's going to be a grandfather. The news came after we had spoken for this interview already, but his daughter Kaitlin, and her husband Andre, are expecting later this summer. And yeah, that's the Kaitlyn diagnosed as a baby herself basically back in 1992. Here's my talk with diabetes dad, Tom, Carl. Yeah, Tom, thanks so much for joining me. I cannot believe that I'm just now finally talking to you for the podcast. I appreciate it. I know how busy your schedule is.
Tom Karlya 5:42
Wow. They Thank you, to you. I mean, it's it's you know, I guess they say when people are busy, they're busy. And those are the type of people we like to hang out with. So I know how busy you've been, how busy I've been, and now the twain has met. So that's terrific.
Stacey Simms 5:55
So much to talk about here and I want to talk about your you know, your experience. ances over these many years, but let's start by, you know, your work with the Diabetes Research Institute foundation. Do you mind telling us, you know, for people who may not be familiar, what is that?
Tom Karlya 6:13
The Diabetes Research Institute in the foundation is is has support for the Institute. It is all the money that the foundation raises goes to the Diabetes Research Institute, which is an 87,000 square foot building that sits on the campus of the University of Miami about 35 years or so ago, when the Diabetes Research Institute foundation first began by a group of parents like many of the diabetes organizations that are out there, somebody there had a connection to the building and construction trade union. And that gentleman said, Why don't we try to raise more money for you. And during June on Father's Day weekend, they created debt, dollars against diabetes and they stood on street corners around the country with buckets and they collected change from anybody at the stop. The lights, etc, etc, etc. And they continue to do that. So they had enough money, and they raised like $14 million. And they took and they built the Diabetes Research Institute, which when it came time when the building was done, the foundation said, Let us name the building after you and all the terrific people of the building trades unions, and they sit down and they say, let's just put a plaque on the wall that said this building built by the hands and hearts of Americans construction unions, and that plaque is still there. It represents a beacon of hope nobody expected it to become the research center that so many organizations, the wonderful organizations out there, the JDRF the ADA is the National Institutes of Health. They fund us We are the scientists doing the work at that center,
Stacey Simms 7:52
and d-ri to be clear if people are not familiar. The work that Dr. II does is cure, cure focus research. Right,
Tom Karlya 8:00
secure focused all the stages of research, basic preclinical and clinical happen within one building. A lot of time in academia, you come up with a finding, then you have to go someplace else to find somebody to collaborate with, we go from one floor to the other floor to the other floor. And our saying is, if we can't move it up, we move it out. Because funds are so limited, we have to make sure that we stay focused on that supply, sustainability insight, which is the three main pillars that we look for, to cure this disease once and for all. And there's also a d-ri Federation, we share all of our information, we hold on to none of it, and we have federations around the world for that matter that we share information with because in Italy and in China, they can do the research a lot cheaper than we can do here. So a lot of times we'll test things out there, then bring it here and follow through the steps of the FDA that are set, etc. to try to get it from the bench to the bedside.
Stacey Simms 9:00
It's so interesting when you kind of dial down and look at how these things work. And I know that as some people are listening, they may be thinking, well, if it's so cure focused, and it's been around that it's funded, you know, how can we don't have more progress? How can we don't have a cure?
Unknown Speaker 9:14
I hate to put it in such simple terms. But
Unknown Speaker 9:16
can you talk a little bit about some of the progress that has been made?
Tom Karlya 9:21
Yeah, that's, you know, I said this before, that's your mouth to God's ears. That's been our hope since the beginning. And it is such a complex disease, and all the wonderful organizations out there as well as the research centers out there. This is just not an easy disease to figure out. I mean, years and years ago, when we first it would there was nobody funding research years ago for type one diabetes, and then to go out there and say, well, we're going to try to cure it. Well, as we went along, and as many other organizations that have, in their wonderful ways have funded our work and work around the world for that matter, have found out just how calm Flex this disease is years and years ago, we were actually told we were one of the first centers. And actually Dr. Kamila, recording our scientific director. He invented the machinery with a board member, Ramon Poe, who donated all of this time, they created the machinery to separate the islet cells from the pancreas when they get donated, and we give that to anybody around the world just to help them try to move it forward. But nobody knew that taking islet cells. So this is interesting, because I've been at this for 26 some odd years since my daughter was diagnosed at age two. And there was a time when people thought you will not be able to take islet cells, insulin producing islet cells and down years later became trying to re engineer stem cells and things to create insulin. There was no proof out there, that you could take islet cells and put them in another body and they would work well. They Did and I have and what's happened since that time is that as we move science forward, you know, I think we should do everything we can to try to figure out how do we make islet cells produce insulin in another person's body without being attacked? And why so many of these are immunosuppression drugs. You know, when we first started, people would say, Oh, yeah, but there are immunosuppression drugs. What people need to understand is that when it came time for the scientific studies, the quality of life of people who entered these research projects, they became patients for the clinical trials, they had no quality of life, because they could not feel going hypoglycemic. They could not feel their blood sugar going low. They couldn't drive, they couldn't hold jobs. They be talking to people they just kill over. So for a lot of these people, this first islet cell transplant became lifesavers because their quality of life was just not existed. something interesting happened when we did that. And around the world, this was done to a lot of different centers and not just at the d-ri, but we were at the forefront of it. And the interesting thing about it, even patients that went back on insulin, for the most part, not in every case, but in the majority of the cases, probably even excess of 80%. But that's just my layman's guess. They're hypoglycemic reactions went away. Even if the islet cell transplant did work, and they had to go back on insulin again, they did not suffer from the hypoglycemic episodes that they had. It has always been this great moving science forward. But the truth of the matter is, is that we will continue to work and I and I was active, I was doing other things when Caitlyn was first diagnosed. And for those who don't know the story, I was an actor for years. I was in a show in New York for for 1314 years talk about that. And we'll get to that and I've done a lot of great things, but I was on my way to a matinee performance when my beeper went off you tell people about beepers like What's that? And it just was said 911. And I went over to the phone, I can tell you right where it was, I remember to this day, I went to hold off of the of the bridge and the Lancey street in New York City. I went to a phone booth, for those who don't remember phone booths or things that had a phone in it. Right. So I called home and my wife said, Tom, I have to rush Caitlyn to the hospital. They think it's type one diabetes, and she had been sick and she had the flu. And, you know, again, it was everybody thought it was something else. And when I got to the hospital, which took me two hours, that was a whole episode in itself. I saw I looked down the hallway and I remember my wife Jill had Kaitlin's jacket was hanging from her hands. And we just looked at each other and I went in and Kaitlin had all these wires and everything attached to her. And I pushed the hair out of her face and I said, Hi honey, and she said Daddy, and she looked at everything she was attached to and she looked me square in the eye and She said,
and it stuck with me. I remember it every day when I start my day. That was a promise I gave my daughter. And I became, you know, whatever. I became an advocate and constantly working at it. And then I got really, really angry because I thought my reward was 2009, my 13 year old son was also diagnosed. So I was pretty angry. And that was also four days after my dad died. So when someone tells me they had a flat tire at a supermarket that week suck, they said, Oh, no, no, I can beat that.
Well, so an X and here we are, you just
Stacey Simms 14:35
have your two year old daughter looked you in the eye and say daddy fix to something that there is no fix. I don't want to make you relive that moment. But when your son was diagnosed, and that was Rob is diagnosed 17 years later, the change in the diagnosis. I know it's not a fix. There's no fix yet, but what was your perspective at that time because the diagnosis had to be different and the care had to be different.
Right back to Tom answering that question in just a moment. But first diabetes Connections is brought to you by Real Good Foods and there is something new from Real Good Foods. They have ice cream. Oh my gosh, real good ice cream. My whole family tried it. We have our favorites. I'll share a little bit more specifically down the road. But oh my gosh, the vanilla is delicious. That's the first one we tried right because you can't hide anything with just a vanilla. So we went right to that. I mean they have other great flavors. They have mint chocolate chip, they have chocolate, they have peanut butter chocolate chip, and we started with the vanilla and it was really good. It tastes like real ice cream because that is what it is. You can find out more at the website and preorder. It's available in select stores. As always, there's the store locator on their website, find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now, back to Tom Carl. Yeah. And he is answering my question about how different it was when his son was diagnosed with Type 117 years after his daughter.
Tom Karlya 16:13
Wow, you're absolutely right. And again, the tools, I always use that phrase, the tools that our diabetes toolbox for our kids has become so amazed, we used to have to wait 90 seconds. After we put Kaitlyn at that time, we couldn't even do our fingers. We had to do her toes. So we get a blood drop on a glucometer. And then we would wait 90 seconds. See if I could help everybody understand one main point that get diagnosed today than when not only 2009. But 1992 when Kaitlin was diagnosed, that the tools we have now are so far advanced. We always say when we try to get our children to live normal lives, you literally can live as close to a normal life as you can accept and there's a huge death there is your child. Type One Diabetes. But for those who have it understand what I mean that with the technology we now have, there was no, Caitlyn was the second child on Long Island to go on an insulin pump. Wow, could you imagine people don't realize that these things were the size of backpacks when they started these. I mean, it's not, you know, like an astronauts backpack, they were huge, but they got smaller, they got better, they got quicker. And that's why research to me, that's why I will never give up hope. Somebody looked at somebody checking their blood sugar, and they said, We can do better with that. And we have, and it's the same thing with research as long as there's a research center. And for me, this is just and everybody else can find their own place where to give their time and energy, but the Diabetes Research Institute, the fact that they are focused now that's a very interesting greement to have with academia, that we are focused on curing type one diabetes, and when we do that many of the patients type two patients for an insulin We'll probably benefit from that as well. But our focus is to cure this disease. As long as there's a place like the d-ri that focused on curing this disease, then I will never give up hope.
Stacey Simms 18:11
My question on that you said something very interesting. You said it's a very interesting agreement to make with academia. Do you get pushback from people who want to do research, but it's not cure focused,
Tom Karlya 18:22
we get not pushback, but we get increased from any university has the right to do and the University of Miami and we have to be honest, as you know, it's such a wide range University. It's got so many different aspects to it. But when they come to us and they say, look, can we look at looking into the type two type of research? Well, we tell them to go to another part of the campus and look for it. And they do. There are places probably on us campus that will focus on complications, you know, transplants they have, you know, they have a lot of different aspects of us, because it is such a great medical campus on a lot of different ways and areas that they can go someplace But when it comes to the Diabetes Research Institute, we have an agreement with them that that's where that focus will say. And a part of that is, in essence, the Diabetes Research Institute foundation is the largest donor to the University of Miami for all the money that we give only to the institute because that's all we'll fund. It won't go anywhere else. And that's because the foundation years ago, the parents had the, the, the wherewithal to say down the line, we want to make sure that this institute stays razor focused on a cure. And that's why that agreement is so important to be in place and we love being part of the University of Miami. They've been very supportive of us. It's a great relationship. And it's been incredible because it also being part of the University of Miami. It gives it the credibility that the world needs to see that this institute is part of academia, but also has raised focus on curing a disease that is only for type one diabetes.
Stacey Simms 19:58
Tom, you're handled your blog. Dave has always been diabetes dad, and I want to talk to you about being a dad for a moment if I could, you know, you've spoken many, many times in your blog. And when you speak in person about your wife, Jill, and how she took care of the kids diabetes, you said it, you know, really the responsibility mostly fell on her that sort of thing. You've given her a lot of credit. But I'm curious as you look back and your kids are grown up, and they're married, and you know, you have a different perspective. Now, what's your advice to other diabetes dads, you know, I think more men want to do more. I don't know exactly how much you did. But can we talk about being a diabetes dad for a minute and what that means?
Tom Karlya 20:36
Sure. And then, and just to be clear, and this is very important part of this discussion, the responsibility did not fall on jail. And actually, when Caitlyn was first diagnosed, we sat down and talked, because I didn't want to make the decision for myself. I didn't say, Well, this is what we're going to do. So she and I sat down and I said, Look, one of us has to stay home. And it was Okay, I didn't say, Well, I'm going to work, and you're going to stay home, we discussed that. And to me, that's one of the biggest keys to parenting with diabetes is keeping that open line of communication and dialogue open. I look at now, I mean, I mean, there was a time, we almost lost everything. Because she couldn't work. I had to work. I was working three, four jobs, whatever it took to keep us moving forward. I knew two things. Income had to keep coming in. And we had to have insurance from that day forward. So everything I did was working toward that. But it came about that I would work the jobs, and she would stay home with the kids and she would work when she could if she could, and then it became we had to find times that I had to realize that this is a partnership and dealing with this disease. So I would say on the days that I could get out of here go someplace, go see a movie go out with friends, we had to try to find time for ourselves as a couple. This is a very strenuous disease and a lot of different areas. And I tell couples and parents all the time, communicate, make sure you're talking with each other, not at each other. You know, I have to tell you one of my favorite stories. I was at the children with diabetes conference in Orlando, Florida. And I usually run the dad's group when I'm there. And there was a man talking and he said, I'm divorced, and this that the other thing, and he said, and I'm here, and the man next to him said, I'm in a second family. I married my wife, and they have a child with diabetes. And it was the father of the child and the new husband of the wife at the same meeting, finding it that important to learn about diabetes. And that was one of the most touching things I ever saw. I said, I wrote to the gentleman who was newly married, I said, You're like my new hero.
Unknown Speaker 22:55
Wait, wait, wait, I'm confused. So the family gets divorced. The EX is there and The new husband.
Tom Karlya 23:01
That's exactly right. Wow. And, And to me, that's as powerful a statement as that could ever be made that the child has to come first. And look, divorces Can I hope never to cut through it and I hope never to have to deal with it. But sometimes it can be very bitter. But you have to remember where your child is with diabetes is the same thing when both parents go to work. And the grandparents want to be involved. I say this all the time, grandparents are the most forgotten people when it comes to the family structure and dealing with diabetes because they want to help. But a lot of times it's like mommy telling the son or daughter what to do. And that kind of, they don't get accepted in as they should. But the grandparents hurt as much as the parents do, if that could be possible, because they want to help and we have to let them and find the mechanisms for them to do so. So the answer to your question is, communication is the most important thing and for the for dads to realize To look for places where you can pick up the ball and run with it, where you can be part of your child's life, don't let your wife do it. Make yourself part of the solution. And you will be. And that's exactly what we did. And because of what I ended up doing for my life, I ended up being the go to person for what was new in technology and what was coming down the line, and you was dealing the day to day management. But that's the balance. You will get to the late Richard Rubin, who is just an incredible, incredible man in the world of psyche of diabetes. He's the one who coined the phrase, diabetes, self willfulness. And it happens to all of us. And it's all about balance. It's all about choices. Such great advice there.
Stacey Simms 24:41
All right, Tom, I got to ask you, you mentioned this earlier that you were acting and you you were on these TV shows, but you were in Tony and Tina's wedding. For people who might not be from the New York area. You're from Long Island. I'm from Westchester County, which is really close by. This was not only a show This was like a party. Can you try to describe Tony and Tina's wedding?
Tom Karlya 25:04
Yeah, it's what's called Point to Point improvisation. The same things would happen every night. But basically, you went to a church in New York City, and then the service would end and you would walk three blocks to the catering Hall. And that was in snow, rain, whatever it was, and it was anything that could go wrong in the wedding would go wrong. An old boyfriend shows up. The father is divorced and is going out with this very interesting woman who, but he used to go out with Tina's mother. It took the whole thing just becomes a mess. But it at the time when it first opened. It was probably the first show that was all about improvisation. Now there's many of them, but they had they been in every city just about in the country and what some of them with long runs like Chicago ran for a really long time, as well. But it was a role that was very interesting for me. I played tennis. Over the years, I ended up doing four different roles. I ended up playing Tony's Father, I was a teenager. Father in the host of the catering Hall and he was like this kind of emcee which saying, tell jokes, whatever. But it was all about the engagement of the audience. So we, the audience, were the guests of Tony and Tina, every night, and we would have to interact with them. And the key to that was to listen, because you could pick up something and then come back to that person later and bring it up. And they're like, how did they know that? And it made it all like they were part of the family. And I mean, there was a time when all these celebrities came and it was it was one of the one time it was probably one of the hottest tickets in New York. You couldn't get tickets yet to wait two months. Kim can't imagine it was the Hamilton of the day but it certainly was a great show and the audience had a wonderful, wonderful time.
Unknown Speaker 26:45
Did you have fun doing that? I mean, I imagine it was it was very hard work, but it had to also be very kind of exhilarating in a way.
Tom Karlya 26:52
Well, it was an active job and it's probably one of the most Yes, exhilarating and and challenging to stay in character mind. came to see the show. And I didn't talk to anything else, but my character. And so it was always fun to make sure that at any given time that we had to stay in character no matter what power failure happened once and we all had to get out of the theater. Well, we all I mean, we met this is like leaving a catering all these people all sitting around tables all around you. And we all had to stay in character when we did that. So it was a challenge. It was fun. But yes, it was a job that you had to be able to stay in every night. You had to pace yourself. I mean, there was a time we were doing eight shows a week. And that's a lot of shows. So it's like any training that you do in the acting world. you train yourself to do the role, because you tell yourself every night that people seeing the show are seeing it for the first time.
Unknown Speaker 27:44
So before we let you go here, give us an update on the kids. The grown up kids now How's everybody doing?
Tom Karlya 27:51
My oldest doesn't have it. TJ he's with the New York state mental health police department. Kaitlin now interesting thing about Caitlyn as I remember you Years and years ago, someone told me you really should just hope for college for your kid. And I said, What are you talking about? You mean she's not gonna make college? He said, I'm not saying that he said, it's just you have to understand how devastating this diseases but make college a goal. Well, that person didn't stay a friend clearly. So,
Stacey Simms 28:17
but but that was a belief at the time people I've heard Well, it was thought that
Tom Karlya 28:21
Yep, yep, yep. And I think that's one of the keys for all of us is to keep our kids so positive that they can do anything with this disease. So not only did she graduate college, not only did she graduate nursing school, but in December, she graduated with her nurse family practitioner ship, and she's now a family nurse practitioner, and she's in practice and she'll be hopefully her goal is to deal with people with type one diabetes. My youngest son is a computer guru, and he was working for a company called Best Buy. And he got tagged by their Geek Squad when he was 18. And I said, Do you like it? He said, Yeah, dad, but that's not where I'm going to stay. And I said, What do you mean? He said, My goal is to be tapped from the Magic Castle. I What's the Magic Castle? He said, it's the corporate headquarters in Minnesota. I said, Well, that's a lofty goal. He said, Well, that's my goal. Well, earlier this year, my wife and I went, saw my son's new office, at the executive row in Best Buy in that building, that they are all in and looked at his new office, because they did just that when he was 21. They tapped him on the shoulder and they bought him out there. And he now works for the corporate headquarters for Best Buy Geek Squad. Now I share that not just because of who they are. But if you have a dream, if your child has a dream, our job as parents is to do everything we can to help them fulfill their dream. That was my son's dream. She's been there now for two years in Minnesota, doing just what he always wanted to do.
Stacey Simms 29:46
That's just wonderful. I mean, I'm getting kind of emotional. Actually, as you're talking about it. I think it's incredible, because you have to let them pursue what they want to let them dream. And when Type One Diabetes comes along. It's kind of easy to think to yourself, Well, maybe We should damp down the expectations. And you didn't do that for any of your kids. And your mantra has always been at least since I've known you is just don't do nothing. So for people who are listening, you don't have to, you know, be a senior vice president of the Diabetes Research Institute. You don't have to you speak all over the country like you do. But as we leave here, is that really your advice? Just do try to do something.
Tom Karlya 30:26
It started with a step. If you told me back then that I'd end up where I was today. I would have told you you're crazy. Start with a step. If you're looking for something to do hang posters around your community about the warning signs for diabetes. There's a mom in texas a mom in Texas, she and I connected years ago and created get diabetes, right. org and all that is is posters that you can download and put around your community for people to know about the warning signs of type one diabetes, and we're not alone. Beyond type one does it all bunch of other people JDRF does it all People have these warning signs. It starts with you looking in the mirror saying the status quo of diabetes in my life just will not do. What can I just start asking the question, What can I do JDRF started by parents. The Diabetes Research Institute foundation started by parents, people out there doing things, podcasts out there, Stacey Simms says, gotta do something. This is my background. This is what I can do. This is what I'm going to do. It's something there's nothing so small, that cannot change a life a life around, just by starting with the first step. This disease will not do in this world, my world, or any world, and look for something you can do to change it. Tom,
Unknown Speaker 31:48
thank you so much for joining me. It's been such
Stacey Simms 31:50
a thrill to hear your story and to talk to you today. I really appreciate
Tom Karlya 31:54
it now. Thank you and thank you for everything you continue to do. And these are the stories that people need to hear because there's a A lot of people out there who don't know that what they can do and how they can do it and, and that's what people need to just keep hearing these stories so they get, you know, there's so many people out there that is so inspired now, and professional sports and dance and drama and theater in studies in school, excelling, diabetes just won't do and just don't do nothing when it comes into your life.
Unknown Speaker 32:26
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 32:32
You can find out more about Tom at diabetes. Connections calm is the episode homepage. Of course, I will link up information to his blog to the d-ri to everything else we talked about and there is a transcription just like there is for every episode this year. And I am working to fill in the blanks on transcriptions in the past as well, because I'm getting such a great response. I wasn't sure right? Do people want transcriptions? Is it worth the time? Let me tell you, it is totally worth it. I've been hearing So many people who maybe just don't have time to listen or prefer to read. And it's a service, I am more than happy to provide as frankly, the technology is getting better. It's still not perfect. I mean, you know, most of these transcription services do not speak diabetes. So I've had to go through and fix a few things. But I'm happy to do it. Because I think it really is enhancing everybody's experience. So thank you very much for the feedback on that. Up next, tell me something good. But first diabetes Connections is brought to you by Dexcom. You know, when you have a toddler diagnosed with type one, like I did, like Tom did, you do hear rumblings for a very long time about the teen years, but when it hit us at full force a little early, frankly, I'm so glad we had Dexcom it just helped us see and really take stock of the changes we made because Benny's insulin needs started going way up around age 11. And he's 15 now and it's almost settling down. I don't wanna get too personal, but you know, along with the hormone swings, I can't imagine managing diabetes during that time. Because we made so many changes without the Dexcom continuous glucose monitoring system, we react more quickly to highs and lows, see those trends and adjust insulin doses with advice from our endocrinologist and I know using the Dexcom g six has helped improve Benny's a one C and overall health. If your glucose alerts and readings for the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to diabetes connections comm and click on the Dexcom logo.
Our Tell me something good stories this week come from a Facebook group called poked parents of kids experiencing diabetes. I'm part of that group and I posted that I was looking for good news stories and oh my goodness, did they deliver so let me bring you a couple. Sarah wrote my daughter just signed to play college soccer. She is so excited to keep breaking down misconceptions about type one and sports Susan says my daughter with Type One Diabetes earned a scholarship and direct admission into a competitive nursing program. She's in her freshman year living on campus and successfully handling it all. Her goal is to be a diabetes educator. And then Beth wrote in this kiddo, Frankie, who has lived more of her life post type one is rocking control IQ the new software from tandem best says slightly off label since she's barely six and definitely under 55 pounds and just got invited to present on a panel at JDRF type one nation in Denver. That was a couple of weeks ago before everything was canceled. But I asked Beth to ask Frankie Yes. And she was on a panel. I had some questions for her. And Beth was happy to oblige. And Frankie answered my questions. So my first question was, what is one thing she would tell a kid her age was just diagnosed with type one, and Frankie said, I would tell them it's okay. Don't be afraid and you can still do everything you want. And then I said What's something she does to feel better when she has a hard day, and Frankie responded, I tell my mom and dad when I've had a bad day, then we usually do something special together to make me feel better. Again, Frankie is six years old, and she was diagnosed at two. But thank you so much for sending that. And thanks to all the parents for responding to my prompt in the group, I really appreciate it. If you have a Tell me something good story you just want to share about your kid or yourself. It can be everything that you heard, it could be a diversity, just you know, with everything that's going on. Let's have some good news in our community. I love it. It's my favorite part of the show each week. I really would love to hear from you. Before I let you go, just a quick note on everything that's going on. I mentioned at the beginning of the show that I was going to talk a little bit about local groups. And all I really want to say about that is if you have a local Facebook group, as many of us do, you know, just check in on each If you have a local text chain or WhatsApp or things like that, maybe your kids have a diabetes camp, I don't even know what kids are using. I was gonna say whatsapp group, but you know, you know what the kids are on tik tok or whatever. Check in with their camp community or other people you may know through your local JDRF chapter. If you're an adult with an adult group, please check in on each other. If you have nobody. If you're concerned, you're by yourself, you're worried we're here, right? I don't know what we can do other than say, we can help. I don't want to make empty promises. But I do think it's really important that we get social connection during this scary time, which really can lead to in real life help. I know that in my community, when somebody needs insulin, we get it to them. When somebody needs a Dexcom sensor. We get it to them if we can. The diabetes community for a very long time has already taken care of the people within it. And I hope that that spirit extends to the whole community during the scare both At the very least, if there are people in your diabetes community that you can help, let's find a way to do so, you know, if you're halfway across the country, there are so many ways to connect, that it's really not that hard to find somebody nearby. So hey, diabetes connections, listeners, that's my challenge for you over these next couple of weeks. I know most of you are already doing it. But if you've listened this far, if you're hearing my voice at this point, check in on your diabetes friends, check in on your community, and let's see what we can do to help each other. We may never need the help, but it is nice to know it's there. I think that goes an awfully long way. All right. Again, I don't know what I'm doing in terms of scheduling for the next couple of weeks. I'm not going to do lots and lots of coronavirus episodes. I don't know that they're needed. I think I will check in if I can with some endocrinologists over the next couple of weeks. Maybe we'll do some Facebook Live. You tell me what you want to hear. But in the meantime, right now I am planning to go back to the regularly scheduled diabetes connections episodes. I have a Few that I've recorded already a few interviews, and I think we'll just put those out as planned. And we will go from there. Thanks as always to by editor john Deakins from audio editing solutions. Thank you so much for listening and for letting me into your lives right now. I really appreciate it. I'm Stacey Simms, and I'll see you back here soon. Until then, be kind to yourself.
Unknown Speaker 39:28
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
Two big topics for this mini-espidoe. Stacey talks about Spare a Rose and talks to the leaders of Patients for Affordable Drugs.
Check out Stacey's new book: The World's Worst Diabetes Mom!
Spare a Rose is an initiative to get insulin and other vital diabetes supplies to children in the developing world. Learn more here
Join the Diabetes Connections Facebook Group!
Stacey also talks about what we can do about the price of insulin with Patients for Affordable Drugs founder David Mitchell and Lauren Stanford, the community organizing director.
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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 One Diabetes available at Amazon as a paperback ebook and audiobook. Learn more at diabetes connections.com
Announcer 0:20
this is diabetes connections with Stacey Simms.
Stacey Simms 0:26
Hey, welcome to this week's minisode something a little bit different. I've been doing these short episodes all year long for 2020. And this is our first interview type episode. But I wanted to get some information to you that I thought would be interesting and helpful and about patient advocacy. So we're going to talk about what's been happening with patients for affordable drugs. I spoke about them. Last fall of it put out a report and I wanted to follow up on it. Of course there's a lot of information in the news these days about the price of insulin price of insulin There were advocates at State of the Union address. These are not the same advocates, but a lot of the same push. And I also want to talk about spare arose. So let's do that first spirit arose is an initiative that happens every year to help kids with diabetes in developing countries, so that they can get insulin. It doesn't take a lot of money to help out and it really does make a huge difference in the lives of these people around the world. Why is it called spare arose? Well, back in 2013, a group of people in the basically the diabetes online community realized that for the price of one rose for Valentine's Day, they could make a huge difference in the lives of children. So you spare a rose, you save a child, they've expanded it so that you can, you know, spare quite a few roses. There are different ways to pay for this. But it's really a very simple concept. Where does the money go? There is an organization called Life or child, and they partner with diabetes centers in places like Rwanda, Mexico, India, to give critical supplies to young people who really have nowhere else to turn. Right now, this program supports 21,000 people in 42 countries. And the goal here, no child should die of diabetes. If you'd like to learn more, I will link up everything in the episode homepage. You can see pictures of the families that have already been helped. You can read stories of kids who need help, and you can find easy easy ways to donate. So if you can possibly spare arose this Valentine's Day, it would be very much appreciated. We have done a lot on this in the past. I will link up a very fun episode we did a few years ago with Carrie Sparling and Scott Johnson and Bennett Dunlap, where we talked about this initiative. Gosh, it was probably 2015 maybe was 2016 but it was a while ago about learning more, and why I really do urge you to consider taking part in Spare a Rose
While you're learning about that initiative, I also thought it was a good time to take a look at what's happening here in this country, and what's going on with our communities struggle to get the word out about the price of insulin. And if you've been following a lot of this, it has really heated up in the last couple of years. It seems like a lot of state legislators are taking this on. But at the federal level, it seems like it is stalling and you know, what can we do? Well, patients for affordable drugs put out a report a couple of months ago now. And I want to follow up with them and learn more about what they're doing. What we can do what what can be done about the price of insulin because I think when many of us hear this, we feel like there's just nothing I can do. It's overwhelming. Politicians are just arguing they're never going to get anything done. Well that may be true, that last bit, but there is something we can do. So I wanted to talk to the founder David Mitchell and community organizing director Lauren stand I should note that since I talked to them, each are three, which they're mentioning here did pass the House at the time of this interview, it had not yet passed, but the Senate has not acted. I reached out to Lauren to get an update on that. And she said that they need to pass the health care package by May. So they are pushing for them to include s 2542. It is less far reaching than HR three, she says but would bring meaningful relief to many patients. This is also called the prescription drug pricing Reduction Act introduced by Senators Grassley and widen and it has passed out of the senate finance committee as of this taping in a bipartisan fashion. It has not yet passed the full Senate and it includes the following it would penalize drug makers for price gouging. It caps Medicare beneficiaries out of pocket spending on prescription drugs, and it requires pharmaceutical companies to justify high prices. I will link up information on this as well as h3 and the other items we talked about in the episode homepage. Here is my interview with David Mitchell and Lauren Stanford, David and Lauren, thanks so much for taking some time to kind of explain a little bit about this. I really appreciate it. Thanks for being here.
David Mitchel 5:18
Thank you, Stacey, for the opportunity.
Stacey Simms 5:20
Thank you for having us. Before we talk about the report itself, and you know what we can do as individuals. David, let me just ask you to explain a little bit about what patients for affordable drugs is all about. Can you talk to us about the organization?
David Mitchell 5:35
Yes, patients for affordable drugs is the only national patient organization focused exclusively on policies to lower drug prices. We're independent, we're bipartisan, and we don't take money from anyone who profits from the development or distribution of prescription drugs. We do two main things we collect patient stories elevate those stories to policy makers and elected officials and train people to be advocates Lowering drug prices. And we are building a community of patients and allies that can be mobilized in support of policies to lower drug prices, both at the state and federal levels. My wife and I decided to do this, because she's a cancer survivor. I am a cancer patient. I had an incurable blood cancer. My drugs are very expensive. They're keeping me alive, but they're keeping me alive at a cost list cost of $875,000 a year right now. And just one of my drugs and oral cancer drugs carries an out of pocket cost of more than $13,000 a year. So we have a personal experience here. And we're trying to bring that experience to bear to mobilize folks who are struggling with high drug prices, whether it's for cancer drugs or Crohn's disease, drugs, inflammatory drugs, insulin, there are millions of people who are struggling We're trying to help them have a voice and get something done that will actually lower the prices of drugs.
Stacey Simms 7:06
Was it your personal experience with your cancer diagnosis that led you to start patients for affordable drugs? Or had you been doing this and then this happened.
David Mitchell 7:15
I had been doing health policy work in Washington, DC for about 30 years, then I got cancer. And my experience as a patient was really searing for me to find out how difficult I prices could make trying to manage a chronic disease or stay alive with an acute deadly disease. And I became increasingly frustrated because there were no patient groups speaking out about drug prices. Literally one day I woke up and I had an epiphany. And it was, hey, maybe if nobody else is going to do this, you should try. And that morning, I went downstairs and my wife said, Honey, can I retire? Can I work for free? Can we put in some of our own Money and try and build an organization of patients that would fight for lower drug prices? And she said yes. So here we are.
Stacey Simms 8:07
All right, I could talk to you about the organization for hours and hours. But we're really here to talk about this report the truth about insulin prices. So Lauren, let me ask you, as a person who lives with Type One Diabetes, what do you get out of this report? what's the takeaway here?
Lauren Stanford 8:22
Well, Stacy, I will tell you, when I first read this report, it was kind of shocking. I knew the prices of insulin, were out of control, but just seeing it all written down and laid out. Like that was kind of horrifying for me as a patient. And I know when people in the community saw it, it was kind of the same feeling like seeing the chart with the prices just going up and up and up and reading about the 300% increases and all this and that it was really like startling, but really good information, but kind of heartbreaking at the same time.
Stacey Simms 8:56
Lauren, let's go through this a little bit, because in the report, you will Aren't pulling punches. I mean, there's a section here that's headline price gouging and price fixing. Tell us about that. So not pulling punches. Yeah,
Lauren Stanford 9:09
we're really there's a lot of facts in this. And I think that the spec facts kind of speak for themselves, the price gouging. You can when you're reading the report, you can see that the three companies Eli, Lilly, Sanofi and Novartis, they've all been working together, it seems and price fixing this insulin to keep raising the prices and the report, our chart goes back to 2001. And you can see since then there's been this steady increase from all three of them. It's just crazy. I mean, I can't put into words how exactly it makes me feel. But David might be able to speak a little more to the history of the price gouging and fixing
David Mitchell 9:47
Well, the fact of the matter is that those three companies have managed to take control of the global insulin market, and they have effectively blocked other competitors from entering the market with The enough competition to actually drive down prices. And rather than compete with each other on price, they are content to maintain market shares and divide up the profits and be able to keep raising their prices in lockstep. It's very important to look at that chart and see whether or not they talk to each other and say, Hey, we're going to raise our price 15% next month, or not, they can each see what the other one is doing. And clearly, none of the three is willing to lower the price in order to try and steal market share their content to keep high profits and divide them up. We're going to have to break that cartel in order to lower prices or develop the ability to negotiate with the three directly which is why legislation to permit direct negotiation by Medicare in this country for lower prices is so important.
Stacey Simms 10:54
One of the things that that strikes me when you use words like cartel and gouging and fixed is why hasn't the government already stepped in? If this is so blatantly obvious, right? Why hasn't the government stepped in and said, you cannot do this?
David Mitchell 11:10
Apparently, I'm not a lawyer, apparently, unless they get on the phone and say, we're going to move our prices 15% all at once and talk to each other about it. They are allowed to do shadow pricing under our current law, and they're allowed to see what the other one is doing and then just match the price. So long as they don't talk about it. You can see what they're doing. It's obvious, but under law, if they don't talk to each other and collude, it's a harder case to prove. That's my understanding. I'm not a lawyer, to say, however, that the government isn't doing anything about it. You have to put one word behind it and that is yet because there are plenty of bills in Congress that would tackle high drug prices. And would allow, for example, Medicare to negotiate directly with the drug companies, including the insulin companies for lower prices. And there are bills to encourage the development of more generic and biosimilar drives that would provide additional competition that would also lower prices. So there is a recognition that this is a problem. But as with every one of the drugs we're fighting for lower prices for enough has not been done yet. We have much more work to do. The fact is in our system, drives are supposed to get a period of time to make a lot of money when a new drug comes to market and then we introduce competition through generics and biosimilars to make prices go down. Insulin is the exact opposite. We introduce these three drugs and instead of prices going down because of competition, they just continue to go up. And it's because of the abuses of these companies engaging regulators recognize it And I believe that within the next couple of years, we will succeed in making insulin look like the more normal model of high prices end and prices go down.
Stacey Simms 13:12
One of the things that I think is really interesting in this report are the personal stories, because it's not just numbers, which are great and useful information. But there are faces and names of people who have rationed insulin who would talk about the struggle to afford it. And Lauren, I mentioned that you live with Type One Diabetes and you have for more than 20 years, can you talk about your experiences and of the people that you know as well because I know you have to know people who've really been in tough spots.
Lauren Stanford 13:39
Yeah, and I always say that I am definitely one of the lucky ones because I've always had help and support with paying for my insulin and I've had my parents to fall back on but especially through my work. At p for ad I've heard stories about I were talking with a patient Yesterday who has to sometimes not pay your electricity bill so that she can afford her insulin every month? And I just hear so many stories like that every day and it's awful. And I mean, Stacy, you know, in the community, I think there's been, I want to say a isn't he? We don't. There's been multiple people who have passed away, I think five in the last year from rationing insulin, and it's just incredible that this can happen in America. I can't believe it. And like I said, I talked to people every day that are rationing their insulin, and it's just outrageous and heartbreaking. And like we say to legislators, when we're on the hilar we hear in our stories, like insulin isn't optional for us and rationing isn't an option at all or it shouldn't be an option that people have to do
Stacey Simms 14:48
something to do. I think one of the ways in which my eyes have been opened in the last few years is you know, when when we're fortunate like you and I Lauren to have insurance, right, right go and I get my supply and my insurance pays for it and it's 25 bucks for me it's no big deal here and there, but then there was a time where we were one bottle short, and they said okay $300 Yeah, that one vial of insulin right you think you think who is paying these prices? Right? It seems like well everybody I know has insurance. So even though the list price is $300 are people really paying that and you come to find out and correct me if I'm wrong here. The system is so complicated that even if you have insurance, sometimes you are paying list price you're paying different prices is that something that you found as well
Lauren Stanford 15:34
was prices are really important because a there are people who are uninsured and be when you're on a high deductible plan, you're paying lowest prices until you meet your deductible. So if you have a $5,000 deductible, then you are paying those lowest prices until you hit that 5000 marks and you know how many bottles of insulin someone may need in the first month of the year. I mean, that could be pretty close to five thousand dollars and a lot of people don't have that
David Mitchell 16:02
out of pocket. So well and I would add that in some plans, insurance plans, even after you meet the deductible, you will have a co payment or coinsurance and frequently that's based on list price. That's certainly true in Medicare. You pay all of your out of pockets based on list price. So list price really matters. And I think it is somewhere in the range of 65% of people who pay for some or all of their medications through the year based on with price.
Stacey Simms 16:41
David, you mentioned earlier, some solutions. Some you said yet. I really liked that. When you said there's this is you know, there's not solutions yet. Can you talk a little bit about some of the things that Congress is considering and also you mentioned a couple of them but help people who are listening Try to make a difference. am I calling up my representative and saying vote on this? am I writing letters? What can we do?
David Mitchell 17:07
Well, you can come to patients for affordable drugs.org and share your story with us because we will see to it that the story gets put to work making the case for why this problem needs to be addressed. And then if you're if they're interested, we'll be in touch after they leave their story and not for money because we don't ask patients for money, but to let them know of times that they can call their right their member of Congress or state legislator to speak up for reforms. What are some of the reforms? There is a bill in Congress right now and it may be voted on in coming weeks, called HR three, which is a very comprehensive bill in the House of Representatives that allow Medicare to negotiate over drug prices, and was set as a cap a number that is no high Or than 120% of what six other wealthy nations paid for their drugs. This would lower prices in this country dramatically, because we pay two to three times what other countries pay for their drives. HR three has other good features would cap out of pockets for people on Medicare, it would include inflation caps, so their prices can't be raised more than inflation. year over year. There's a bill in the Senate that is bipartisan, being championed by Senators Grassley and why didn't that would have inflation caps, again, making sure that drug makers can't price gouge by capping increases year over year at the rate of inflation. And the Trump administration has thrown its support behind the senate bill and the Trump administration may be about to bring forward April causal only covering Part B drugs. Those are drugs administered by doctors and nurses in hospitals or doctors offices that would use reference pricing international reference pricing to literally lower the price of Part B drugs to small sliver of drugs. It's only a pilot program, but it's very significant that the administration has brought this idea forward. So there are a number of proposals that are floating around. There are a number of other dynamics in play right now. And I'm laughing It's not funny, but there is a lot of obviously political energy being sucked out of the room by the impeachment process and the partisanship that exists, but I can tell you for sure that if Democrats and Republicans Both in Congress and in the White House could get a deal on drug pricing, they would all really like it. Because there's so much anger and energy around this issue. They want to go home and campaign on having done something. So we are trying to leverage that political energy to see if we can get something done. Before we get too deep into the election year in 2021, it will become increasingly difficult. Yeah, that
Stacey Simms 20:25
makes a lot of sense. It really does. I'm curious, and I don't want to be devil's advocate here. But and I know there's a lot of hope. And there's a lot of energy, as you say, but I'm trying to think of a time where we actually made progress on medical pricing, and things like that. And I mean progress, where prices came down and access improved in the last generation or so. Not to say it can't happen now. But has it happened have we had success in any of these things?
David Mitchell 20:55
know we actually have the most expensive health care system in the world. Some people think we have the best health care system in the world. But we don't actually, we have the most expensive health care system in the world, other countries have found a way not only to pay less for their drugs, but to pay less for all of the elements of health care, and still have better health outcomes, longer life expectancy. We have a system that is built in many ways, not only the drug pricing system, but the whole system is in many ways built to benefit the people who make money on it more than benefit the people who is supposed to serve. So we have hope, and drug pricing because 90% of Americans say they want Congress to do something about it. Democrats, Republicans and independence, there is an enormous energy. It's the only reason that there's hope because pharmaceutical industry is probably spending about a billion dollars a year to fight anything that would lower drug prices. And the amount of money that our side has, is dwarfed by that billion dollars. But what they don't have and we do is a very angry electorate, demanding that the people who they send to Washington and state capitals do something. That's what gives us hope. And that's why having people speak out is so important.
Stacey Simms 22:27
Lauren, let me ask you, you have been at patients for affordable drugs for not not too long. A couple months now. Are you? Okay, are you more hopeful than when you walked in the door?
Lauren Stanford 22:38
Ah, definitely. I don't know if that's because of the political timing, but I can tell you what, these people if anyone's going to get it done. It's this group and our advocates. We have strong voices and to echo what David said before something that we have that pharma and the pharmaceuticals don't have are these compelling patient stories and I think we're doing a really good job of making sure they're heard on the hill and that something needs to change. And I'm definitely hopeful that something is on the horizon, there is not a more deserving cause I think then lowering drug prices so that people can afford to live. So I'm very hopeful.
Stacey Simms 23:19
Thank you both so much for spending some time with me. We will link up the full report, you know, as we have in the past and information, how people can get in touch and share their stories, but I really appreciate it and thanks for fighting the good fight.
David Mitchell 23:31
Thank you, Stacey very, very much. Thank
Unknown Speaker 23:33
you
Stacey Simms 23:34
information on everything they talked about at diabetes connections. com, click on the homepage to learn more about patients for affordable drugs, the legislation that they talked about a link up some insulin for all hashtag stuff as well some other resources that are out there. And of course, I will also link up to spare heroes that I talked about at the very beginning of the episode. I know Valentine's Day is just about here as this episode airs. It's tomorrow but it is Not too late. And of course, the sparrows initiative will continue for a few weeks after Valentine's Day as well. So please, if you can take part back next week with our longer interview episodes, those drop on Tuesday, and I'm going to be talking to the guys behind the new book that's coming out. They have a podcast to mastering diabetes. And I don't know if you've seen these guys, their claim to fame, their big trademark is they're like, eat 500 carbs of fruit. And I had to talk to them, because it could not possibly be that simple. Of course, it was not. But they really were fun to talk to. It was an interesting conversation. It didn't go quite the way I thought, because sometimes there's a lot of snake oil out there. This is not that they are the real deal. They are the real different deal. But it was great to talk to. That's on Tuesday. And then next Thursday, we will have another minisode and that will not be an interview episode as I just did. And that'll be back to just me talking about one topic for 10 years. 15 minutes. I love doing these. There's so much fun. I've learned a lot already in just the last couple of weeks and I hope you're enjoying them too. If you have a topic that you'd like me to talk about our question you'd like answered, please let me know Stacey at diabetes connections. com or you can just go ahead and post in the Facebook group. I have so many fun interviews lined up. I'm so excited for the weeks to come. But I always want to listen to you and deliver what you would like to hear. So if you got something, please please please let me know. All right, I am Stacey Simms. I will see you back here on Tuesday. Until then, be kind to yourself.
Unknown Speaker 25:42
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai