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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: Category: general
Dec 22, 2020

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

Mar 18, 2020

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.

Join the Diabetes Connections Facebook Group!

In Tell Me Something Good – college sports, school scholarships and a young JDRF advocate answers Stacey's questions.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Sign up for our newsletter here

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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

Feb 13, 2020

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

Dec 10, 2019

Meet dietitian and strength coach Ben Tzeel. He says he started getting hooked on strength training as a teenager and hasn't looked back. Ben & Stacey talk about his wild Instagram posts where he shows you how he doses for food like giant donuts, and carbs and macros and diabetes and exercise..

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

In TMSG: a girl scout troop decides to educate their community (check out the video here) 

and a comic book from the UK aims to educate about T1D (more here)

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Stacey & Ben also talk about specifics to help her son, Benny, as he begins high school wrestling. At his first double practice (weights & mats) Benny needed to eat 75 uncovered carbs to stay above a blood sugar of 80!

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Nov 6, 2019

Recently, the FDA approved the very first stable liquid glucagon, brand name GVOKE, and as it’s showing up in pharmacies and becoming more available, we wanted to learn more about it.

After all these years.. it’s amazing how we suddenly have two new options on the market. The orange or red box glucagon most of us have held onto since diagnosis was approved back in 1961!

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

This is the second FDA approval for a next-gen improved glucagon, in 2019,  following the recent FDA Approval of Lilly’s nasal glucagon, Baqsimi.

The company that makes Gvoke is called Xeris. Stacey talks to CEO Paul Edick and senior VP Ken Johnson.

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Gvoke info:

Main website from Xeris

Savings & Support from Xeris 

Disclosure: Stacey has received compensation and travel reimbursement as an adviser to Xeris at previous events. No compensation was asked for or provided for this interview (or any Diabetes Connections interview).

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Oct 22, 2019

This week.. a frank discussion about the type 1 diabetes community and inclusion. About race and diversity. Actress and model Anita Nicole Brown says people of color are being left behind

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We talk about how to get more voices in the community.. and better representation at conferences and in leadership. We also talk about working on sets and getting booked for acting jobs with type 1.

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In Tell Me Something Good.. a bunch of ride and walk milestones to share.

One of our TMSG mentions is Dennis who's been on the show before. We talked about turning 65 with type 1 - Medicare and more.

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This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Oct 16, 2019

What happens when two huge diabetes organizations decide to work together? We're all about to find out. Stacey talks to the CEOs of JDRF & Beyond Type 1 about their newly announced "alliance."

Buy Stacey's Book - "The World's Worst Diabetes Mom"

JDRF's Aaron Kowalski and Beyond Type 1's Thom Scher join Stacey for a talk about why these groups came together and what that means for the diabetes community.

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More info about the announcement here

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Sep 10, 2019

This week, it's our Ask the D-Moms back to school edition. We talk about tech in school, schedules, 504s and when your kid only has twenty minutes for lunch. Stacey & Moira McCarthy answer your questions.

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Plus.. Tell me Something Good with a big brother who steps up, and a pageant appearance that makes a difference

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This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Aug 27, 2019

This week, Stacey moderates a frank conversation about women’s issues and type 1 diabetes.

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You'll hear about everything from periods to menopause to standing up to your doctors. The panel includes Elizabeth Forrest, the founder of Touched by Type 1, the conference where this panel took place, lawyer Risa Katz and Nicole Johnson, who is with JDRF now and was Miss America in 1999.  All the women live with type 1 diabetes.

This is an excerpt of the full panel - we'll run the entire thing in our "Extra" bonus episode which will follow this one by a few days.

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In our Community Connection this week, we’ve been sharing the story of project 50 in 50 – two guys with type 1 tackling the highest peak in all 50 states in 50 days. They did it!

And TMSG: a little help from our friends goes a long way. Great story of support at the endo’s office.

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

1:40 Stacey welcome: Benny start high school and Lea is off to college

5:30 Excerpt from Women of Type 1 Panel from Touched by Type 1

35:40 Community Connection: Project 50 in 50 is complete!

41:30 TMSG: Two teens with type 1 help each other out at the endo & Stacey gets some good news at the JDRF Central Virginia Type One Nation Summit

46:30 Stacey is on the road - JDRF Houston is next, then Children with Diabetes in Falls Church, VA - request her for your event here.

pre-order Stacey's book: The Worlds Worst Diabetes Mom here

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Jun 27, 2019

Low carb, high fat, counting protein for dosing insulin.. when it comes to food and diabetes, there’s a lot to keep in mind. It's not as simple as reading a label and measuring a dose. Registered Dietitian and Certified Diabetes Educator Hope Warshaw takes us through the most recent research about eating well with diabetes and talks about food labels. 

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Learn more about the ADA Dietary Guidelines for 2019 

This is the full interview with Hope. An excerpt ran in the previous episode. All of our "Extra" interviews like this will be available as transcriptions! To READ the podcast, make sure you're signed up for the newsletter. Each month you'll received an easy to read version of the show!

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