Scott Benner 8/14/24 Scott Benner 8/14/24

#1279 I Don't Understand... Jenny One

Insulin shortage and why is insurance coverage for type 1 diabetes such a crapshoot?

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Scott Benner 0:00
Hello friends and welcome to Episode 1279 of the juicebox podcast.

On today's episode, Jenny and I, we talk about some stuff that we don't understand. Please don't forget that nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. I know that Facebook has a bad reputation, but please give the private Facebook group for the juicebox podcast, a healthy once over juicebox podcast, type one diabetes. If you're newly diagnosed, check out the bold beginnings series. Find it at juicebox podcast.com, up in the menu in the feature tab of the private Facebook group. Or go into the audio app you're listening in right now and search for juicebox podcast. Bold beginnings, this series is perfect for newly diagnosed people. When you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box. You music.

This episode of The juicebox podcast is sponsored by cozy Earth. Cozy earth.com use the offer code juicebox at checkout to save 40% off of the clothing, towels, sheets, off of everything they have at cozy earth.com the episode you're about to listen to is sponsored by OmniPod and the OmniPod five. Learn more at omnipod.com/juice box. Use my links to support the show. This episode of The juicebox podcast is sponsored by the Eversense CGM, an implantable six month sensor. Is what you get with Eversense, but you get so much more exceptional and consistent accuracy over six months and distinct on body vibe alerts when you're high or low on body vibe alerts, you don't even know what that means. Do you ever sense? Cgm.com/juicebox,

Unknown Speaker 2:26
go find out.

Scott Benner 2:28
Jenny and I are doing something new together today. And while she was talking about what we were going to talk about, she got so passionate. I was like, Oh my God, wait. Let me turn the recording on. So Jenny, this is an episode of I don't understand, and I asked you to make a list of things diabetes related that you don't understand, and that could mean anything, right? We're going to do a number of these, so don't feel a lot of pressure. Your list will grow. But your first one was, what tell people what you don't

Jennifer Smith, CDE 2:55
understand? My first one is insulin shortage, right? And we've all, to some degree experience, some type of message coming from our pharmacy or our supply company that's like, you can't get your insulin right now. We are on a shortage, or it'll be around in a month. Check back with us and we'll send it to you, right I experienced it, but it seems to be over. My pharmacy has no issue sending my insulin. I still have people that I work with who are still worried about getting their insulin, because they've been told over and over, there's still a shortage going on. Humorously, saying to you, I'm like, I don't understand. How do we have a shortage, right? This is, this is made in a, let's call it a factory, right? That's kind of how I think about it. We're not, you know, worried about not having enough pig pancreas to grind up and, you know, get the insulin out of anymore. We're not doing that. So where is the shortage? And in my mind, it's clearly coming from some issue that's monetary. It's got to be driven by some monetary. Somebody's not getting enough because we've outsourced insulin production outside of the country and or to countries that aren't getting something back from something that was promised. Like this is where my brain goes with this. Like

Scott Benner 4:12
this is where your conspiracy theories

Unknown Speaker 4:15
jump to.

Jennifer Smith, CDE 4:16
How do we get an insulin shortage? Okay, when we've got plenty of chemicals to make the insulin. Yes, right. Okay,

Scott Benner 4:25
all right, so I'm going to, I'm going to go to chat, right? I actually am. So here's my first questions, where do pharmacies get insulin? Says pharmacies obtain insulin through a supply chain that involves several key players. One manufacturers. Insulin is produced by pharmaceutical companies such as Eli Lilly, novo, Nordisk Sanofi. These manufacturers create different forms of insulin, including rapid acting, long acting and intermediate acting varieties. Okay. Second, they get pharmacies, get insulin through wholesale distributors. Once the insulin is manufactured. Richard, it's sold to wholesale distributors. More pharmaceutical wholesalers in the US include companies like major excuse me, McKesson, AMERI, source Bergen and Cardinal Health. These wholesalers purchase large quantities of insulin from the manufacturers and distributed to the pharmacies. Okay, so the chain goes manufacturer, distributor, pharmacy. Then there's retail pharmacies, including chain pharmacies like CVS, Walgreens and Walmart, as well as independent pharmacies. Purchase insulin from the wholesaler. The pharmacies then dispense the insulin to patients based on prescription for Okay. Supply chain logistics. Throughout this process, the supply chain logistics involve ensuring the insulin is stored transported. So there's it's making the point that there's a lot that has to happen here for it to be stored properly and transported properly. Sure. And then Pharmacy Benefits managers and insurance companies often play a role in determining which insulin brands a formula formulations are covered. Okay, that doesn't have anything. Well, it does say it impacts what brands and formulations are covered under various health plans, influencing what pharmacies stock. So

Jennifer Smith, CDE 6:11
okay, and my understanding of the shortage was primarily shortage of vials. I understand that people were very, very able to get pens.

Scott Benner 6:23
Today's episode of The juicebox podcast is sponsored by OmniPod. And before I tell you about OmniPod, the device, I'd like to tell you about OmniPod, the company. I approached OmniPod in 2015 and asked them to buy an ad on a podcast that I hadn't even begun to make yet, because the podcast didn't have any listeners, all I could promise them was that I was going to try to help people living with type one diabetes, and that was enough for OmniPod. They bought their first ad, and I used that money to support myself while I was growing the juicebox podcast. You might even say that OmniPod is the firm foundation of the juicebox podcast, and it's actually the firm foundation of how my daughter manages her type one diabetes every day. Omnipod.com/juicebox whether you want the OmniPod five or the OmniPod dash, using my link, let's OmniPod know what a good decision they made in 2015 and continue to make to this day, OmniPod is easy to use, easy to fill, easy to wear. And I know that because my daughter has been wearing one every day since she was four years old, and she will be 20 this year, there is not enough time in an ad for me to tell you everything that I know about OmniPod. But please take a look omnipod.com/juicebox I think OmniPod could be a good friend to you, just like it has been to my daughter and my family. This is from a listener. Thank you for introducing me to cozy Earth for my birthday, I bought stuff to update my bed, sheets, comforter and a blanket. It honestly made our lives better. My husband and I used to have a conversation in quotes every single morning about who pulled the covers so far to their side, or how we were too hot or too cold. That never happens. Now, both of us sleep better and more comfortably, and don't get me started on the clothes you all should just try one piece. Use the offer code juicebox at checkout at cozy earth.com and you will, in fact, save 40% off of everything you put in that cart cozy earth.com use the offer code juice box at checkout.

Jennifer Smith, CDE 8:37
But the shortage was from a vial standpoint, which, for the majority of people who then use pumps, they're filling a pump from a vial. You're not filling it from an insulin pen. So therein, you know, lies the question of,

Speaker 1 8:53
I understand how it

Jennifer Smith, CDE 8:57
navigates through in production, but like a shortage in my brain is, oh, there just were not enough strawberries in the field to supply 20 people who wanted them. We only have enough for 10 people today because the strawberry genie came and couldn't do his job, right?

Scott Benner 9:16
So maybe it's files we're going to find out. And it says here, and by the way, I want to be clear for people, because this is a newer series. We did not look into this beforehand. This is us figuring it out right now. That's why Scott's reading online talking and I'm reading, okay, so let's back, like back engineer this if you live in a town where a lot of people work for a certain company, and that insurance company covers Humalog, and you work for a different company, and your insurance company covers, I don't know, Nova log, right, but you're the only one in town who gets Nova log, then maybe this pharmacy would stock less Nova log than Humalog, because the people in the so there's, there's a component to that. That I understand. But let's see, the recent insulin shortage has been primarily caused by a combination of manufacturing delays and an imbalance in supply and demand. Eli Lilly, one of the major producers of insulin, announced a temporary shortage of two of its products, 10 milliliter vials of Humalog and insulin list pro the shortage is expected to persist until at least the beginning of April 2024 so this is a thing that's happened in the past, and most people are cleared out now. This is why you hear somebody jump online. They're like, Hey, I went to the pharmacy and they told me there was an insulin shortage, right? Okay, now that's the first problem, you're listening to a 19 year old person who's working at Walgreens, and you're getting and you're like, oh my god, there's an insulin shortage. Becky told me, Becky was smoking weed behind the Walgreens 20 minutes before that. Just keep that in mind. Okay, as you're getting your your medical information from her, she's literally sitting there like, I want to go out and see a movie tonight, and she told you there's an insulin shortage, and now she knows

Jennifer Smith, CDE 11:04
nothing about it, other than what was written on the thing for her to tell customers. Now in the morning, she

Scott Benner 11:09
doesn't even understand the feelings in her own heart. Yet she's so young, okay? Or he doesn't matter to me, several factors contributed to this sort of shortage. Firstly, there was a brief delay in manufacturing at Eli Lilly. Additionally, the dynamic nature of insulin supply and demand has further complicated the situation leading to these products being out of stock at wholesalers and some pharmacies. So the pharmacy is telling you, I can't get the insulin, there's a shortage, but they mean they can't get it from their wholesaler. They don't know that. It means that the company hasn't gotten into the wholesaler. Not that that's probably not what happens. But do you know what I'm saying? Like, where? Where's the sticking point? Where's the break? Right? Yeah, this shortage has forced many patients to seek alternatives, such as switching to a different brand or type of insulin, which can be challenging due to insurance coverage and prior authorization requirements. Yeah? Because you'll hear people say all the time, like, well, just use this one. They all work the same. Yeah. Well, I'm, you know, I'm not buying crayons. Like, I can't just pick up the the cheap ones and go, I'll use these for a while. Like, right? Yeah, so you've got to, but that there is a pathway to that. Call your doctor. I can't get Humalog, etc. Can you write my script for this? I mean, but who knows? Like it is scary now,

Jennifer Smith, CDE 12:22
well, and the main reason, as you read, is manufacturing, right? So it starts with manufacturing. So then, yes, down the line, the consumer being the end of the line, the user is the one who sees the problem, whereas where is the manufacturing? But what did people not come to work. These are my big right? Did they lose a lot of employees? Did they not get paid? So they had to lay people off, and so now there's not enough people to make it, right? Manufacturing, I'm trying to

Scott Benner 12:54
find out right now. I asked our overlords, and I said, What was the manufacturing issue? Be more specific. Actually, I wrote Pacific, but it figured out what I meant, brief delay in manufacturing. Yeah. I mean supply constraints, wholesalers and pharmacies, Eli Lilly is actively working. Yeah, see now it's just getting to like press. Tell you

Jennifer Smith, CDE 13:16
only what Yeah, can tell you.

Scott Benner 13:18
Tell you what Eli Lilly said out loud is what it can tell you the situation has led to, yeah, okay, obviously, was it a vial shortage? Oh, it says yes. The recent insulin shortage involved a specific issue with the availability of the 10 milliliter vials. Eli Lilly reported that these particular vials would be temporarily out of stock due to a brief delay in manufacturing. This affected their supply chain. Yeah, well, I mean,

Jennifer Smith, CDE 13:44
like, isn't that right? So if you can not get vials as easily, but you can get pens, it's not the insulin in and of itself. Did they not were they not able to make enough glass to put the vial Right? Like, what is the what is the problem? I

Scott Benner 14:00
just asked Mike, how could we run out of glass vials, right? But it says raw material shortage. I mean, it's going over ways that could happen, capacity limitations, quality control issues, yeah, so there is that, right? There are times that these companies make stuff and they gotta trash it, you know, sure there's that you can get, you know, something's contaminated, or whatever they they'll blow out the whole run and throw it away. And

Jennifer Smith, CDE 14:25
understandably and thankfully, that they're looking at that for, obviously, something you're putting in your body.

Scott Benner 14:31
Yeah, no kidding. So, but what did you hear from people? Like, just, was it just, I can't get my and how long did it go on for? For

Jennifer Smith, CDE 14:39
quite a while? Like my personal was I had called for, I mean, I've got a pharmacy that ships to me, and so I do it all through my electronic medical record. I just say, hey, I need to refill my prescription. Yeah, they send it off to me. And so I actually got a physical phone call back from the pharmacist. She was like, you know, do you. Enough, are you okay? Or are you just refilling to keep up with your refills? And I said, I'm okay. I just want to keep up with my refills. And she was like, okay, because she said, right now we don't have your stuff. She said, we're looking at being able to have it within about a week, is what I was initially told. Well, it took about three weeks for me to finally get and some people it was longer than that. And that's where, you know, there are more questions than about that. Why were why were some people further delayed compared to other people? Why did some people not even know about it or not really have any issues? Was it because they had enough, and they just don't refill as often because they have enough supply at home. But it was from, I want to say, somewhere early April, definitely, through June. Yeah, I was still hearing issues in June, of people being very careful about their insulin because they were traveling with it and everything with insulation so that they didn't have to start up their reserve bottles and that kind of stuff.

Scott Benner 16:05
So I saw somebody recently online. There's a picture that says, What did it say? It was a little plastic like Tupperware container. Tupperware is not a real thing anymore, but you know what I mean? Like a little plastic container? God, how old am I? I'm like, I'm

Jennifer Smith, CDE 16:18
Tupperware parties. My

Scott Benner 16:19
mom had them. I'm referencing food storage devices that don't exist anymore. Oh, I must sound like my grandmother, okay, it said Armageddon insulin on it. Yes, I saw that, right? So whoever put that up? I thought that was brilliant. So basically, if they have insulin that dates out, they don't get rid of it. They stick it there in case the zombies come, because they can still give it a try. And I was like, Oh, right on. Never thought to do that. But I also don't throw away. I mean, I just use it up till it's gone.

Jennifer Smith, CDE 16:50
I think I last threw away, like my basal insulin, right? That I keep on hand, yeah, always refill it, you know, whenever it's expired or whatever. And I was cleaning out, maybe it was, I don't know, January or something, this year, and I came across a vial of my basal insulin that was like five years old. I could probably get rid of this one, because I have two more vials in here that are not used either.

Scott Benner 17:16
We just threw away, I'm not lying to we just threw away syringes that were, it was, my God, it was, I thought it was filled in 2014 the prescription. I was like, I don't think we're gonna use these. We can get rid of these. Hey, here's something interesting. I asked chat, G, P, t4, oh, have pharma companies been building more manufacturing for insulin and glps? Because I heard something about that. Oh, pharmaceutical companies are indeed ramping up their manufacturing capacities for insulin and GLP drugs to meet the growing demand. Eli Lilly has made a significant investment to expand its manufacturing capabilities. Recently, the company announced an additional $5.3 billion investment to build a massive manufacturing complex in Indiana, oh, aimed at producing active pharmaceutical ingredients for its diabetes and obesity drugs, including Manjaro and zepbom, the investment of Vi Oh, it sounds like they're just gonna sounds like they might just be doing it for this. But hold on a second. Novo Nordisk is significantly expanding its manufacturing capabilities of companies investing 2.3 billion to upgrade its production sites in Chartres, France, I've definitely mispronounced that, to increase capacity for current and future drugs, including jlps. Additionally, Novo Nordisk has allocated 6 billion to expand its manufacturing facilities in Denmark, focusing on increasing capacity for active pharmaceutical ingredients, including semaglutide. They're throwing a lot of money into glps, is what they're doing. Yeah, yeah. Eli Lilly has announced a $72 million investment to build out insulin manufacturing capacities at one of their facilities in Indianapolis. This is part of a broader $1.1 billion investment to expand and upgrade their US operations. Additionally, Lulu has earmarked 5.3 billion for a new manufacturing complex Indiana. We heard about that. So, yeah. So it looks like they're doing all that. Also, it says here a South Korean pharmaceutical company is investing $100 million to build an insulin manufacturing plant in West Virginia.

Unknown Speaker 19:26
Okay, interesting, that

Scott Benner 19:27
makes sense. The facility is aimed to produce insulin at a reasonable price for the diabetes population. Oh, I is this part of what's that nonprofit company making insulin. Hold on is the unit bio. That's what it was called. Story

Unknown Speaker 19:47
related to a low cost

Scott Benner 19:55
manual factoring company and. That's US based this is all me trying to say I can't remember the name of a they were on here. They came on here and did an interview with me.

God, why can't I think of what it's called? This is kind of, it's kind of wicked. So all right, yeah,

Jennifer Smith, CDE 20:20
I was looking up to it looks like

Unknown Speaker 20:23
civica. Yes, that's it. Thank

Scott Benner 20:24
you. Good job.

Jennifer Smith, CDE 20:26
Yeah, civica to manufacture and distribute affordable insulin because I remember I had gotten an article about

Scott Benner 20:32
it as well a while ago. Yeah, they were on here, long time ago. Also, I've been trying to reach out to the Mark Cuban company, but they're not getting back to me. Episode 675, how affordable insulin happened. Martin Van trice is the president and chief executive officer of civica. RX certificate is making affordable insulin. He's the one who mentioned West Virginia that stuck in my head, by the way, that I recorded that in 2022 in May, episode 675, he actually has stepped down since then. Oh, I think this was, you know how sometimes those guys who have had like, a ton of like, business success, they retire and they come back one more time and take like, another swing at something like the guy that set up the manufacturing for OmniPods in America. He was one of those guys. He worked for Pepsi manufacturing. He had retired, was playing golf, and they came and got him, and he set up all the manufacturing for OmniPod. Good dude. Chuck, very deep voice. Um, okay, do we have any other things outstanding about insulin supply that you didn't understand? No, all right, well, that was something Jenny didn't understand, yeah, and now we all understand much better. Yes,

Jennifer Smith, CDE 21:45
absolutely. So if it ever happens again, I'm assuming it will be something, I mean, did we really identify truly the manufacturing issue? No, no, we didn't, no, but because it's not disclosed, it's entirely they're not going to tell what the problem was, and that

Speaker 1 22:01
I find that the case with so many things

Scott Benner 22:06
like that. Well, you know what I always say when, when people are like, Oh my God, there's like, I did it last time. Did this happen? People like, there's an insulin shortage. Insulin shortage. Eli Lilly said that they're blah blah, and I came online, I said, Listen, if Eli Lilly is telling you what the problem is. It's already fixed. It's all right, right, yeah, you know, that's how think about how you hide from your parents or your spouse or stuff like you don't tell them about it when it's on fire afterwards go, My God, funniest story about when I was making my eggs this morning. The

Jennifer Smith, CDE 22:35
fire is out. Everything's fine. Yeah. I don't want to mention it

Scott Benner 22:39
while it was happening because I was embarrassed, but I mean, that's in the end, that's what companies do. They don't tell you anything till they know the answer. Today's podcast is sponsored by the Eversense CGM, boasting a six month sensor. The Eversense CGM offers you these key advantages, distinct on body vibe alerts when high or low a consistent and exceptional accuracy over a six month period, and you only need two sensors per year. No longer will you have to carry your CGM supplies with you. You won't have to be concerned about your adhesive not lasting, accidentally knocking off a sensor or wasting a sensor when you have to replace your transmitter. That's right. There's no more weekly or bi weekly hassles of sensor changes. Not the ever since CGM, it's implantable and it's accurate. Ever since cgm.com/juicebox, the ever since CGM is the first and only long term CGM, Eversense sits comfortably right under the skin in your upper arm, and it lasts way longer than any other CGM sensor. Never again will you have to worry about your sensor falling off before the end of its life. So if you want an incredibly accurate CGM that can't get knocked off and won't fall off, you're looking for the ever since CGM, ever since cgm.com/juicebox, and if you don't know that, you're not paying attention. So anyway, once they're telling you what the problem was, it's already taken care of.

Jennifer Smith, CDE 24:12
It's already but I do,

Scott Benner 24:14
I take your point though, like, I mean, if it's just like, we couldn't get the vials, or, you know, like the plant wasn't working. I don't know how that, like, how does it? I mean, the answer is humans, right? Like, it's always, that's always the answer.

Jennifer Smith, CDE 24:28
And the interesting thing is, it was across the board, in in both of the major Novolog and Humalog both had shortages.

Unknown Speaker 24:39
So being separate companies.

Scott Benner 24:44
Why were they getting something from the same price? Right?

Jennifer Smith, CDE 24:48
That's where there's something, something there that

Scott Benner 24:53
we're 20 minutes from Jenny, talking about the Illuminati. Hold on a second. There was, there's a recent shortage of Nova. Log products. The shortage included both flex pen and vials. The situation was due to intermittent back orders and manufacturing delays experienced by novo, the company reported that these supplies issues were expected to be resolved by December 2023 it says, despite shortage, actively producing and shipping insulin, I don't know like. What is it? It doesn't say like, and this thing only knows what it knows. You know what I mean, but Right, yeah, listen, if somebody from the pharma company wants to come on and explain how you suddenly don't have access to glass bottles, like, when I can buy them on Amazon, yo, I saw a lady. Can I tell you something that's got nothing to do with anything, but I'll end on this. Yeah, I saw a video of a lady, and she has type one, and she wants to use GLP medications, but she wants to micro dose it a little bit every day, right? And so, instead of taking, so, first of all, instead of, like, you know, getting a prescription for, I don't know, like, 2.4 milligrams a week. Ovi is, like a weight loss thing. She's got the, like, the mother of all, like pens, like, with, you know, a ton of milk milligrams, she puts, injects it into a bottle, mixes it with some hydrostatic something or other. Like, she's like, having a little project in her house, then drawing it up. She has a conversion chart for how to get the milliliters, the milligrams changed over to like insulin units, so she knows how much to use, and she's hitting herself from an insulin pen. She's every day she's given herself a little pop of it. And in

Jennifer Smith, CDE 26:32
no way is this medical advice we are not using to try to

Scott Benner 26:36
I watched it me, the guy who makes this podcast, was like, I don't know if you should be saying this out loud, but at the beginning, she said, This is not medical advice. And I thought, yeah, that's how I do it. But, um, but no kidding, Jenny, she's, she's like, I don't. She wasn't looking to lose weight, and she doesn't want to not be hungry. She just wanted a little bit of that, of that help with the the insulin resistance she was having. I was like, God damn, this is gonna happen one day. You know what I mean, although there isn't novo, hold on a second. Is Novo Nordisk working on a once daily GLP pill.

Unknown Speaker 27:16
I think I heard something about that. I think I heard something about that.

Scott Benner 27:23
And by the way, when you hear me say that, people are probably like always trying not to say where you heard something from. That's not true. I legitimately don't remember if I heard that or not. Risk is working on developing a once daily GLP one pill companies advancing with its phase three clinical trials for an oral version of semaglutide, a GL, 1p agonist. Okay, there the the oral formulation known as Robles and lower doses for diabetes treatment is being tested in higher doses for weight management, obesity treatment, the 50 milligram dose of oral semaglutide has shown promising results with significant weight loss outcomes in clinical trials, they've completed the phase three Oasis trial where the 50 milligram version of the oral semaglutide demonstrated an average weight loss of 17.4% over 68 weeks. I'll take that not bad with obesity without type two diabetes, that's obesity without type two the results are comparable to those achieved with their injectable like we covid. All right, cool. All right, Jenny, let's go find out what else you don't understand. Interesting.

Unknown Speaker 28:25
What else

Scott Benner 28:27
I don't understand? If you don't have something, there's plenty I don't understand.

Jennifer Smith, CDE 28:30
I understand the surface level. But again, this is more of a Go ahead in Jenny. In Jenny's world, everybody just get what they need to get, because they need it, right? And with type one diabetes, this is like most of what we use is in a way, life or death, especially insulin, right? Sure, products technology I get, but even with that life expectancy and all the things that we're working hard on blood sugar management for, we do better with more technology,

Unknown Speaker 29:04
right? Just has been the case. So my big

Jennifer Smith, CDE 29:07
issue is really with, why is insurance coverage such a crap shoot? Really, like, Why does one cover this? And, you know, I understand it has to do with contracts. And the companies come to the insurance and they're like, hey, we'll give you this and if you promote this product, and blah, blah, blah, blah, blah, but that is like, diabetes is not a one size fits all, and in a job like environment, you don't necessarily have a choice in insurance, right? You have to go with what they're offering you, or you can decline it and go to the marketplace and pay, like, exorbitantly more money, right? That's

Scott Benner 29:47
not a thing people can just do, right? Most people aren't going to say, oh, I'll just go pay cash for it. Don't worry about correct Exactly.

Jennifer Smith, CDE 29:53
And then the further you go with insurance coverage, it's like, once you get older and you are now in the. Medicare with type one diabetes. Do you know the hoops that people have to jump through in order to not only continue to get what their coverage is, but there's a defining time period of lab work has to be done within this like 30 day it has to be supplied in order to prove that you're still eligible to get these products. Like, why are we making this so hard? Why are we making it so that people have to do so much work just to get what they need when they're already doing so much work to just be healthy? You know what I mean I

Scott Benner 30:40
do this is, this is what I call your question on this one is, how do I explain this

Jennifer Smith, CDE 30:47
not really answerable? I

Scott Benner 30:48
know. No, no, no. It's, it comes from like a pure place. The question, yeah, I know what you said, Trust me, this is a question a 12 year old would ask. I don't know. Why is there war? Yeah? Right, yeah, I got you, don't worry. And there's nothing wrong with that. I don't mean 12 year old pejoratively. I mean a person who doesn't have the experience of being alive. And then we get into this idea that, like, you know, you know, they say people become more cynical as they get older. They'll say, like, liberal people get more conservatives, they get older. Like, that kind of stuff happens, right? And you start seeing the world work the way it works, and you think, well, that's just how things are. Like, we can't fight this, right? Like we were, you know, I told you that Arden, one of the questions Arden is gonna answer, or wants to have answered in her episode about I don't understand, is, I don't understand why there's only two political parties in America. Like, she's like, I wanna understand right there with her, right so like, and if you ask an adult in their 50s, they'll go, Oh, listen. And they'll give you some like, this is how it goes. This is what happens. But what they really mean is, is that people are trying to keep control of things. And when you have something you want to keep it makes sense. When you have something valuable you want to make money off. It makes sense, etc. I think that all applies right to this. Right? Like, this is just, this is, like, I have some stuff. I want more stuff. I want to keep my stuff. And so why can't, you know? So the the technical reasons, chat, GPD said, formulary, inclusion, cost and negotiations, clinical guidelines and efficacy contracts with manufacturers, patient demand or doctor recommendations, regulatory approvals, cost effectiveness, plan, specific policies, prior authorization requirements. These are the impacts on why some insurance companies cover a certain insulin pump and others don't cover that. And

Jennifer Smith, CDE 32:39
what is, what does it boil down to? What's the one word? Yeah, it boils down to, I mean,

Scott Benner 32:44
you're gonna say greed, I'm

Unknown Speaker 32:45
gonna say money. Okay, yeah,

Jennifer Smith, CDE 32:47
right. A lot it goes right along with greed. Really,

Scott Benner 32:50
I'm American. I don't see money as greed, but I hear what you're saying. So, like, I so here's what in my mind. The way I think of it is, there's a bunch of companies. They all make an insulin pump, for example, or they all make a glucagon, or they all make, right, you know, a CGM, or whatever. Like, there's a group of companies making a certain thing, and it kind of does fall back to Jenny's other I don't understand. Question is, like, why doesn't, why isn't there just one pump that does the best stuff that all the pumps do, which is, like, right on, you know what I mean? But the reasoning is, is that somebody dreamt up a tubeless pump. Actually, I had the guy on here one day, if you want to look for the episode called the pod father, I think this guy just dreams up a tubeless insulin pump. Well, the next thing they do when they dream it up is they patent the living hell out of it, right? So, like, you ever watch Shark Tank, and someone in a shark tank.

Jennifer Smith, CDE 33:41
I have seen it. I don't watch it very regularly, but I've seen it. One of

Scott Benner 33:45
the guys will ask every time, what's special about your product? Meaning, what can we patent about it? Because if there's nothing special about it, then you're gonna have this great idea. You're gonna start selling it. Everyone's gonna knock it off, and we're not gonna be able to make any money. Make money, right? Right? So they patent their tubeless nature, or they patent their algorithm for something, and then another company would come along and say, hey, well, we do this really well, you know, company B does something well, that company A doesn't do. If we could just combine what a does with B, my God, this thing would be way better, except we can't, because they patented it already, and we can't copy it. Do you know that the company TiVo? Do you know what that is? Tivo was like one of the first third party DVR services? Oh, yes. TiVo, yes. Uh huh. Tivo patented their something in their software, something like a season pass. So you could, I know I'm right about this, and if I'm wrong about it, I'm just the guy talking on the internet. Leave me alone. But they patented the Season Pass, which was this thing where you could go into your menu, go, Oh, here's Shark Tank, click, give me a season pass. And I would like the Season Pass to record every new episode, or I'd like it to even record the reruns you. Know, now playing, I think they called it. There was this massive list of Shark Tank episodes. They patented the Season Pass. And so the like companies like Comcast, who were making their own DVRs, couldn't give that functionality in their software, and that functionality is what makes the DVR fantastic. Like, isn't that crazy? That, right? That's insane, but that's how it works. And so if I have that story a little wrong, forgive me, but I have, I have trust of any, I have a lot of it right. Like, so why can't the insurance company here ready? We're gonna bring this whole thought around. So why can't, I don't know, Blue Cross and another company both offer me the mini med like, why can I get, like, OmniPod from them, but I can't get, I can't get Medtronic from them. That's where you get. One is

Jennifer Smith, CDE 35:49
covered better. One is covered at, like, almost 100% but yes, you can do this one, but it's not in the network, or whatever they call it, and so you're only going to get 50% coverage versus if you go with the approved product, then you get full coverage. Who I Am. Have you lived with me? Do you understand my that's where my real problem with this is, they're they're screwing with people's individual life of need and not understanding.

Unknown Speaker 36:21
They just don't understand, that's it. Yeah, yeah.

Scott Benner 36:25
They say to you, look, we're gonna pay full 100% for tandem. And you go, but I really wanted a tubeless pump. And they go, that's fine. We'll pay 70% of that. And you go, I can't afford the other 30% and they go, getting a tandem pump that is set up by the companies. Oh, absolutely right. Because when you absolutely listen, every time you hear, like, something news coming out, and you're like, oh my god, when's it coming? Why is it taking so long? You know, it takes the longest is them making their contracts with the insurance companies around the country? Yes, they are negotiating with insurance companies around the country and listen, do respect to them, if they can't sell the damn thing, then they just spent five years designing something that's going to put them out of business because they can't sell it. You know what I mean? So they've got to do what they've got to do within the system. So what's our question here? What's the real world, nitty gritty understanding of how formularies are set up. Tell me about the financial reasons behind why I can't get a certain pump product. Let's see if this let's see how devious this thing is. Also never type, shall we play a game into this? Oh, just in case you never saw war games. Jenny, Have you never seen the movie War Games, the 1980s film, war games with Matthew Broderick?

Unknown Speaker 37:51
No, although I'm sure my husband is a big guy down right? He has, yeah, no, I

Jennifer Smith, CDE 37:55
have never seen that. We'll do that

Scott Benner 37:57
at the end to see what happens. See if we can start thermonuclear war with chat GP, they probably can't, oh, that's what. That's how it started in the game. He sat down, he's like, shall we play a game? And then the game was like nuclear war, except it started anyway, war games. Check it out. Check it out. Yes. Formulary setup is complex process driven by both clinical and financial considerations. Here's a breakdown of how it works key players in the formulary decisions pharmacy and therapeutics committee. The committee is usually composed of healthcare professionals such as doctors, pharmacists and nurses, and they review and evaluate clinical data on new and existing drugs and medical devices. Their primary goal is to ensure the formulary includes effective and safe treatments that's going to be the other thing is that all these companies put out their data, it all matches up pretty well. So to them, it's a wash this pump or that pump. You're going to end up with an A, 1c about like this says the data right, right, but you're saying I might want a tube, or I might want not a tube,

Jennifer Smith, CDE 38:56
and or I might have skin issues that don't allow me to use a particular tubed pump or non tubed pump, or a particular cannula, or a particular CGM, and you've done everything you can to use it, because that's what you can use. And you do better with the other product that isn't approved, like it's such a and then the hoops you have to jump around, your doctor has to write letters, your doctor has to prove the case that you need this one versus this one. You have to prove that you're having, you know, hypo one awareness in order to get this product versus that. Like it's it's mind boggling. Yeah,

Scott Benner 39:32
and you need to do all that, because if you just took everybody at their word, everybody would just lie to get the thing they wanted. We'd be right back. And by the way, I wouldn't blame them if they did. Also, most of those letters that your doctors are writing are horses and like. So again, it's just, it's true. It's just, of course, it's true. It's adding a layer of complexity to knock out the people who won't fight the fight the whole way. It's it's just like when, whenever you turn anything into insurance, the first thing they do is deny it. You. It's because some people will pay and some people will call back, but most people will just pay. So, you know, they tell you, you can't have that pump. Most people go, okay, and that's the end of it. And some will fight, what do I do? And the doctor's like, Oh, we got to write a note of medical necessity. What does that mean? And what that what that means is the doctor's like, well, that means I sit down and I write up some that I know that they're gonna accept, and I'll say it about you, and then that becomes healthcare, right? Yeah? Like it's all just that pharmaceutical benefits managers PBMs are third party administrators of prescription drug programs for insurance companies. They negotiate with drug manufacturers and pharmacies to manage drug benefits and controls. There is an entire 10 year podcast about PBMs to be had. If somebody, you know how often I was willing to talk to you, I go online all the time. Hi, I'm looking for somebody who used to work at a PBM. Not going to get anybody, because they probably signed an NDA when they left with their fat, you know, stock options and Okay, negotiations and rebates, rebates, another part of, by the way, all this that nobody really understands, even the people are involved in it. Manufacturers often provide rebates to PBMs and insurance companies in exchange for favorable formulary placement. A rebate is a discount. Oh, I know what a rebate is off the list price of a drug or device that is paid to the insurer after the purchase. These rebates can significantly influence which products are included in the formula. So your insurance company is like, look, Jenny needs insulin. She can take any of these. If Company B is going to send me a rebate and I'm going to save when I pay for a vial of insulin, and I can still charge Jenny the same amount for it. Well, then this is the insulin Jenny's getting because it's cheaper for me the insurance company, which is something set up by the pharmacy benefits managers,

Jennifer Smith, CDE 41:46
who gets a lot of money, yeah, the job that they're doing, yeah, a lot of money. Yeah.

Scott Benner 41:53
Hold on a second. Tell me about the people who own PBMs. Are they wealthy? What island do they own that they're flying in on a rocket to? Kind of jets do they fly in? Pharmacy Benefits managers? This is going to get me killed, by the way, if I disappear. You guys know what happened? I don't know. He got hit by four cars, they'll come to me next that he fell down them stairs and then his body, yes, the question. His body landed on top of a lady with diabetes in Wisconsin, killed her instantly. Health CVS Caremark is a fortune 500 company with significant revenues in its pharmacy and health care services. As of 2023 CVS Health reported revenues exceeding $300 billion now there's what you can't get your insulin Express Scripts. Cigna Corporation acquired Express Scripts in 2018 they are a major player in the healthcare industry with revenues of approximately 174 billion. The acquisition of Express Express Scripts for 67 billion significantly boosted its PBM operations. They paid 67 billion for Express Scripts, and now it's worth 174 optimum RX. United Health Group is the largest health insurer in the United States, with revenues suppressing 350 billion. Humana is a major health insurer with revenues of over 90 billion. Its PBM operations contribute significantly to overall business and primed therapeutics owned by a coalition of Blue Cross and Blue Shield plans. Wait a minute. The insurance company can own the PBM. Okay, hold on a second. While smaller than some other competitors, Prime Therapeutics manages billions in drugs spend for its BCBS affiliates. Hey, by the way, if any of these companies don't like this, talk to chat. GPT, not me. I'm just reading the internet. You're just reading it. Absolutely wealth of PBM executives. Meanwhile, we

Jennifer Smith, CDE 43:51
have teachers who can barely afford to, you know, drive a car to get to work and teach the children what they need to learn. This is what's happening.

Scott Benner 44:01
Top executives at PBMs and their parent companies often receive substantial compensation packages, including salaries, bonuses, stock options and other incentives. I want to jump in here and say I'm okay with people making money. Okay? Like, like, yeah. But

Speaker 1 44:14
Jenny makes a point. It's a simple point. If you have type one

Scott Benner 44:19
diabetes, you ought to be able to get the pump you want. You ought to be able to get the insulin that works best for you, and the CGM in the end, it's a bunch of plastic with some wires inside of it, or not, and it comes from just what's the point.

Jennifer Smith, CDE 44:31
You make billions anyway. So just sign the paper that says, anybody who has type one or type two, or, you know, diabetes, you can have the system that you need to have if you have insurance coverage plan. This is what your these are your options you choose. I'm going

Scott Benner 44:46
to tell you, I'm going to leave this lady's name out, but in 2022 the CEO of CVS Health earned a 20 million in total compensation, right? Yeah, come on now listen. I want to say this. This is going to sound like I'm if. If this person or made $5 million in total compensation, and we had 15 million left over and we divvied it up between everybody with diabetes, you'd all get 18 cents. So like, that's not where the problem her making $20 million I mean, is Jesus Christ. That's a lot of company to make it a year. But that's not, that's not the problem. The problems up here with the $350 billion made, or 174 billion. Because if you add these up, by the way, it's 300 billion, 174 and 350 that's three companies. Then there's 90, and then Blue Cross isn't listed. But what we're talking about here is just the ones that it listed. Please add up 300 billion, 174 billion, 350

Speaker 1 45:48
billion and 90 billion. The total is $914 billion okay, $914 billion

Scott Benner 45:54
with A, B, by the way, that's what chat, G, P, t4, point it sounds like, if you let it my boil down

Jennifer Smith, CDE 45:59
to this is if you and your company and all of minions that are within this, right? I don't understand what the problem is. Just signing the paper that says, Look, give them what they want. I don't. That's where I have a really hard time with you're going to make money regardless. Can't

Scott Benner 46:20
they make this money? And let you decide between libre and Dexcom, and ever since, yeah, right, right, right, there's the human part. That's what I was talking about the beginning, right? The like, I got it, I want it. I need to keep

Jennifer Smith, CDE 46:32
it like they don't manage one of these companies. Yeah, chicken company would

Scott Benner 46:36
be broken. None of you would have a Dexcom. Then she'd be like, what happened? She's like, I just gave them to everybody. We don't have any money, and we closed so I think that is the other side of it, is that, listen, these companies, they employ probably countless people. Those people have children, those some of those people, and some of those children probably have type one diabetes. Like, you know what I mean? Like, it's, it's not as clear cut as all that. But I do wonder why a company couldn't sit down and say, Is there not a way we could all, like, we can collude to take money from people? Like, could we not collude to, like, make sure everybody gets what they want but they need? But they might tell you, it doesn't matter. Like, what if that happened? What if they sat in room and said, Listen, here's the list of you know, what we see with people who, you know, have type one diabetes. This percentage of people don't have good health, health outcomes. No matter what we do for them, we can't seem to figure it out. And this like, what if the answer is, the chips fall where they fall. They're gonna fall there no matter what. At least I have a boat like that would be horrifying. But I'd love to have that conversation with somebody who would be interested in just being honest and and say, like, look, we we've tried this, we've tried that, we tried this. It don't work. Because, I mean, I know people who work inside of big companies, and it's difficult to make anything happen. It is, you know, it's incredibly difficult to make anything happen. You can say, well, it's on the people, or it's on the leadership, but it's not. None of it's that easy. Sometimes you build this thing and it gets so big, it's controlling itself almost, you know what I mean, and then there are bad actors inside of it sometimes, and good actors, and they spend a career fighting against each other and getting absolutely nowhere. So I don't know, but I think if I had $20 million I'd be happier. I just want to say that I'm pretty sure, I'm sure I would think I'd be I

Jennifer Smith, CDE 48:25
can imagine all of the things to do with $20 million none of them involving my own yacht or my own plane, like, right? I just that's, I don't know. I have no desire for that kind of stuff. Even if I had the money, I can think of many other things that I would do with that amount of money that are serving

Scott Benner 48:47
every wealthy person says that at some point the numbers meaningless. And that number, by the way, is lower than you think. It is an amount of money that you would live your life happily with. It's less than you think it would be, and that's even more upsetting, because that means that somebody's got, you know, somebody's living a great life off of a million dollars a year, let's say, and the other 19 is sitting in a pile somewhere that's going to eventually get taxed to death, and then go to one of their kids and turn their kid into a heroin addict, because they don't have to work, and then they'll have three Other heroin addicts, and then before you know it happens, I don't know what to tell you, like, this is what happens. My

Jennifer Smith, CDE 49:26
thoughts always go the other direction they go. They could do this, and they could teach their children to be good people. That's if it works out. Financial influences

Scott Benner 49:33
and market power. PBMs wield substantial market power, negotiating prices with pharmaceutical manufacturers and pharmacies. These influences can lead to significant can lead to significant financial gains for their owners and executives. The consolidation of PBMs has also led to increased profitability as larger entities can negotiate better terms and achieve greater economies of scale. Here's from chatgpt, criticism and regulation, the wealth and influence of PBMs has attracted. Did scrutiny and criticism. Critics argue that PBMs contribute to higher drug prices and lack of transparency in their pricing and rebate practices. This has led to calls for increased regulation oversight to ensure fair practices. Blah, blah, blah, I'll tell you this, I have had some of the best conversations of my life with chat GPT four. Oh, you could sit down and ask it anything, and you get back more information than you would get if you sit down with people sometimes. Sure, it's interesting, because

Jennifer Smith, CDE 50:28
it has such a wide reach to pull from access it, right? It's just got access to. It's like having the entire encyclopedia Britannica in your head and just being able to snap out, yeah.

Scott Benner 50:42
Now also I asked it a slanted question. It did source, by the way, it sourced CVS, health annual report, sickness, financials, United Health Group, financials, Humana, Prime Therapeutics and CV, they actually did all this. So let's say this like would what you told me change, if the tone of my question changed, meaning, what if I asked if this system is necessary To make sure Americans have the supplies they need.

Unknown Speaker 51:23
Or is that a false equivalence?

Jennifer Smith, CDE 51:29
I'm amazed at the length of the question that you can give it, that it filters it well you can,

Scott Benner 51:38
it's amazing. Jenny, I can drop in, I could drop in a transcript right now of any conversation you and I had, and say, Give me the key takeaways of this. You'll read them, and it'll sound like you and I are talking to each other, and it's, it's in, kind of like a bullet point boiled down and beautiful or explained out. Depends on if you want arguments for the necessity of PBMs negotiating discounts. PBMs negotiate discounts with rebates with drug manufacturers. That's from a diatribe article formulary management. PBMs develop and manage formularies to ensure that effectiveness medications, blah, blah, blah are lowest possible cost. Claims processing, PBMs handle the complex process of claims, education, adjunction during the prescriptions are processed accurately and effective. Well, that seems like we made a big mess, and now somebody has to learn how to like weed through the mess. Yeah. Cost control measures, pharmacy networks. PBMs create pharmacy networks to provide patients with access to medications nationwide by negotiating contracts with pharmacies. PBMs ensure the patients can get their prescriptions filled conveniently. Criticisms opaque pricing practices. Critics argue that PBMs often operate with a lack of transparency. I mean, I would, if I was making three, $50 billion I'd be like, I don't think anybody needs to know what's happening over here, right? Making it difficult to understand how much of the rebates and discounts actually versus go to the patients versus the PBMs, and that that the opacity can lead to higher out of pocket costs for patients, rebate structures, systems can incentivize PBMs to favor higher cost drugs that often that offer larger rebates rather than cheaper or equally effective alternatives, potentially driving up overall health costs. The consolidation of PBMs has led to a few large companies dominating the market. I think we can all agree that that mostly doesn't end well for us. Impact on pharmacies. Independent pharmacies often struggle with reimbursement rates set by PBMs because they don't sell as much, I guess so. If you cut undercut them, they're gonna and by the way, I go to a I go to a private pharmacy, just like some nice man who started a pharmacy, started a

Jennifer Smith, CDE 53:43
pharmacy. Yeah, I actually get my products a lot less expensive going through the pharmacy that I am, comparative to where I used to get them. Yeah,

Scott Benner 53:54
now I, by the way, they calls me, Hey, your thing's ready. Come on over. Blah, blah, very nice. Like you're not rushing around notification,

Jennifer Smith, CDE 54:00
I get like a text notification, ready? You're ready for refills? You could say, yes. What do you need to refill? This, this and this, great. It'll be sent to you. Are you sure you still live at this address? Yep, sales job. Jenny,

Scott Benner 54:12
by the way, that's a sales job. They got your drugs that you need them. This conclusion is very clear. The PBM systems play a crucial role in managing drug benefits and controlling costs within the US healthcare system. However, it is not without significant criticism regarding transparency, market power and the true cost savings benefits to patients. Whether PBMs are the best or only way to ensure Americans have access to necessary medications, is a subject of ongoing debate with alternative models and regulatory reforms being actively discussed as pens, potential improvements again,

Unknown Speaker 54:44
unless we all pull up

Scott Benner 54:46
$950 billion and hire some people to go down to DC and lobby for us, I don't think it's going to change that much. Right? That's the answer to your question of, how come I can't just have that now, if you want to ask another day, why? Like, can I have a tubeless pump that uses that algorithm instead of this algorithm, and it does this instead of that? Blah, blah, blah, that answer is patents. So, oh, 100% you know, getting around that, yeah, and those companies deserve, you know, they deserve to make money off their idea. But correct

Jennifer Smith, CDE 55:16
and their ideas are valuable for the people that they meet the need for absolutely, I don't disagree with you know, your own ideas being something that could benefit this person versus that person at all. It's great to have choice. It's great to have all the choices that we really do. I just wish that we had the choice to truly make. I want to pick this just covered. It's

Scott Benner 55:43
just another thing Jenny doesn't understand. I understand question. So Jennifer, you do me a favor and you keep making that list of things you don't understand. And we're going to do this for a little bit this summer. Is that okay? That sounds fun? Yeah, you had a good time. Scott reads. The Internet. Was good for you. Perfect. It was beautiful. All right, I know you have a thing to do. Go ahead and do it. I'll

Jennifer Smith, CDE 56:01
say I do. Thank you. Okay, bye. I

Scott Benner 56:07
want to thank the ever since CGM for sponsoring this episode of The juicebox podcast, and invite you to go to ever since cgm.com/juicebox to learn more about this terrific device, you can head over now and just absorb everything that the website has to offer. And that way you'll know if ever since feels right for you, ever since cgm.com/juice box. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to omnipod.com/juice box. That's it. Head over now and get started today, and you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. Huge thanks to cozy Earth for sponsoring this episode of The juicebox podcast. Cozy earth.com use the offer code juicebox at checkout to save 40% off of your entire order. Are you starting to see patterns? But you can't quite make sense of them. You're like, Oh, if I bolus here, this happens, but I don't know what to do. Should I put in a little less? A little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the juicebox podcast. It begins at Episode 1000 you can also find it at juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 okay, well, here we are at the end of the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app, go to YouTube and follow me or Instagram. Tik Tok. Oh gosh, here's one. Make sure you're following the podcast in the private Facebook group, as well as the public Facebook page you don't want to miss. Please do not know about the private group. You have to join the private group as of this recording, it has 51,000 members in it. They're active, talking about diabetes, whatever you need to know, there's a conversation happening in there right now, and I'm there all the time. Tag me. I'll say, hi, hey. What's up, everybody? If you've noticed that the podcast sounds better, and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording doing his magic to these files. So if you want him to do his magic to you wrong way recording.com you got a podcast. You want somebody to edit it. You

Unknown Speaker 58:47
want rob you.

#1278 Twist My Brain

Julie's son has type 1 diabetes and ADHD.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to Episode 1278 of the juicebox podcast.

On today's show, I'll be speaking with Julie. She's the mother of three, and one of her children has type one diabetes. And ADHD, please don't forget that nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. AG, one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's juicebox at checkout to save 40% at cozy Earth com, if you're looking for community around type one diabetes. Check out the juicebox podcast, private Facebook group. Juicebox podcast, type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out juicebox podcast, type one diabetes on Facebook.

The episode you're listening to is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, 888-721-1514, you can get your diabetes testing supplies the same way we do from us med. This episode of The juicebox podcast is sponsored by Eversense. The Eversense CGM is more convenient, requiring only one sensor every six months. It offers more flexibility with its easy on, easy off, smart transmitter, and allows you to take a break when needed. Ever since cgm.com/juice box, this show is sponsored today by the glucagon that my daughter carries. G vo hypo pen. Find out more at gvoke, glucagon.com, forward slash juice box.

Julie 2:20
My name is Julie. I'm the mother of an 11 year old type one son, and I work as a pharmacist in critical care for a living 11

Scott Benner 2:29
year old son. That's type one. Your critical care pharmacist?

Julie 2:36
Yes, I am. What is that? Pharmacist in hospitals, people don't seem to realize but they're a bit everywhere, kind of hiding in the background. Obviously, there are some that are in the dispensary looking at the orders that come in, dispensing them as but the more it goes, the more the profession is becoming deeply involved in the teams on the units. And so a critical care pharmacist is a pharmacist that is in with the ICU team, rounding and a bit like a consultant, but part of the team where you try to customize, adjust, make sure the meds are ordered right and safely for everybody.

Scott Benner 3:16
Did you happen to hear the first episode of the cold wind series? I did, yeah, and that person was a clinical pharmacist. Am I right? Ah, it's a pharmacist in a hospital, bunch of beds. She said they were involved in some of the care stuff. Maybe something similar, perhaps,

Julie 3:33
or I thought I did, or maybe I heard the brainstorm. I don't know if I heard that one. Oh,

Scott Benner 3:38
okay, well, I got to speak to that person. That person spoke anonymously because they were being very honest about the hospital they worked in and some of the things they saw. Do you need to be anonymous or? No?

Julie 3:50
No, because my, my goal is not to be a whistleblower. Okay, it's more to give the reality of the practice. Nice.

Scott Benner 3:57
I would love to hear about it, and you're just so I don't wonder the whole time. Are you French Canadian? I am. You sound very French Canadian. That's

Julie 4:05
why I asked. I know. And the more tired, the more it comes across, really.

Scott Benner 4:08
Oh, that's interesting. Are you tired now?

Julie 4:10
I am. How come? Because I do too much with not enough time and and take care of of my type one, but also of my two other boys. And

Scott Benner 4:21
yeah, I know it's a it's a lot. I think it's a bit of a circumstance of how great life is right now and how many things there are to do and accomplish and see. It makes you feel like there just isn't it really does feel like there's not enough time. I woke up at 430 this morning just to go to the bathroom. Open my eyes. I feel the bathroom. Went to the bathroom, I walked out, I went, what about this? I checked on something, and I went, looked at something else, and then before I knew it, I didn't go back to sleep, and I haven't been bored or slow and it that was eight hours ago. Now, you and I are recording at noon my time. I still have 1000 things to do today. I'm excited about every one of them. So. So I know how you feel. But anyway, you're here to Well, I guess you know what. First, let's find out a little bit about your son with type one. How old was he when he was diagnosed?

Julie 5:09
He was six years old. We're just past the five year mark. Okay, how is it going? We're not achieving the same kind of goals that you and your daughter are achieving, but it's going as good as it can. My son also has ADHD, which makes life a little bit more difficult. So we need to find ways to find compromise between what he can do and the goals that we would love to

Scott Benner 5:35
achieve. What are some of the things that stand in the way of of the goals?

Julie 5:39
The first thing is, is inability to keep his eyes on his blood sugar. ADHD, people usually need a short term reward that they care about to get themselves going. Diabetes is a long run right? So it's not very easy for him to actually look at his blood sugar and even to react to alarms when Dexcom is screaming at him, because it's less interesting than what else he was doing at the time where the alarm came. Does

Scott Benner 6:09
every person not need a reward for things to be interested in it?

Julie 6:14
Yes, but if you're not able to foresee the future and so try to aim for long term goals. Okay, diabetes becomes not interesting quite fast. I see, I guess he's never had any really bad lows that required, like glucagon or anything like that. So for him, the idea of severe hypo is still very elusive, like, it's not something that's tangible. For him, yeah,

Scott Benner 6:38
I understand. So he manages with what I mean, you're in Canada, they give him a stick and a rock, and you pour the insulin through a leaf.

Julie 6:46
Well, when we started, we were given umog and NPH, because there's no nurses in school in Alberta, and so we needed to find a way to cover lunch without having a poke at lunch, which works, not at all, but that was the first, the first year of therapy, because of the setup that we have, and because, like, I was offered a pump after three months, but I was not ready with what it implied I needed time to process, because here with no nurses, that means that if something wrong happens With the pump. I have to drop everything at my work and then go help him out, right? Because at the time, he was six, right? Well, no, he was six the first year, and then he was seven when we started the pump. The

Scott Benner 7:32
pump, it's not in every province, correct, but there are some where there are just no school nurses. So this whole NPH thing is how they get around that.

Julie 7:39
Yes, that's, that's the practicality of it without school nurses, right?

Scott Benner 7:44
Okay, so when a pump could have helped, you weren't ready. What kept you from being ready? Do you recall,

Julie 7:49
as I said, for me, it was the idea that, because you know, like you know, that if the pump stops working, if that's tripped off, something happened,

Scott Benner 7:57
I'm sorry, just the fear that if something happened at school, you'd have to leave and go there.

Julie 8:02
Yes, because I have a job, because I don't know how my boss, how understanding my bosses are going to be, gotcha, it was just very heavy on my back. Yeah, a few months later, I was ready, but then we were on vacation when they were giving the pump classes, and so it took, in the end, 11 months to be able to access the pump. I

Scott Benner 8:18
see, I just kind of imagined that there would be other reasons, but that reason was strong enough for you that it just stopped the conversation. Yes, yeah, okay. That being

Julie 8:27
said, he was getting to it was very sensitive initially, and so you would end up like above what Dexcom measures every single evening. And I couldn't exactly correct him, because it was at a time where I was hoping to sleep a bit, and you would go from like here is 18 to four, so something like 350, to 70 with half a unit of insulin, which was the smallest measurement that the pen was allowing.

Scott Benner 8:55
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Julie 10:16
in total, 11, nine and seven. Gotcha. Okay,

Scott Benner 10:19
so you would see that high blood sugar, and know, if I make a correction, even a small correction, to this, it very well may be a low in the middle of the night, and I have to sleep or this whole thing's gonna fall apart. Yes, yeah, that's a tough decision, right?

Julie 10:34
It was awful, yeah, but I didn't have the confidence to just because I could have pulled the syringe and done it myself, but I was just not there. I was kind of frozen. Yeah,

Scott Benner 10:46
yeah. Can you talk a little bit about the, I'm assuming, guilt that comes with letting the blood sugar stay high?

Julie 10:53
Oh, obviously, like that guilt is even today, that guilt is is awful. Like I don't need to to be convinced of what I need to do to get my son where he needs to go. At my work, I see the people that have all the complications by their 30s and 40s. Yeah, no, I see all the people that that chose to not take care of themselves or were pushed into it because of circumstances. I play as hard as I can, but I guess I'm limited with what we can achieve with my son, with the fact that there's literally nobody looking out for him at school.

Scott Benner 11:33
So there's nobody at school to help. He's not able to focus on himself, no, and there's only so much you can do your spread thin enough already,

Julie 11:44
yeah, I basically go in from a distance, right, right? I

Scott Benner 11:48
would imagine then your focus, when you have free time to think, is about how to get him into a place where he can help himself better. Is that? Right?

Julie 11:55
Yeah, twist my brain backwards to try to find how you can manage or how he can take more on himself, or give him more freedom, because now he's a pre teen, and he doesn't necessarily want to eat on a schedule, so we give him tools, and I try to emphasize because with ADHD, having visual or physical reminders is key to be able to keep remembering like the short term necessary short but the working memory is faulty to certain extent, and so being able to have like, alarms on his phone or a cheat sheet in his lunch, or even, like I use masking tape that I put on every single container and every little thing in his lunch, so that, in the worst case, if he grabs the thing, he's gonna see the green tape and it will remind him that he needs to bolus. And how much does that work? For the most part, it works okay. Sometimes he forgets to do some things or but it's as good as it can be.

Scott Benner 12:55
Do you have the opportunity like to text at lunchtime?

Julie 13:00
When he was younger, the teachers were open to have Dexcom on their phone and to have me text them. The past couple of years in grade five and six, that kind of went away. The teachers don't want to give their private number. Some of them told me, I don't want to have my cell phone in my classroom. So even, even if I write them a 15 page care plan like I'm supposed to they're not able to apply any of

Scott Benner 13:23
it. Think that's an excuse from them. Or do you think they really don't want I mean, do you know three people that don't have their phone with them?

Julie 13:30
I don't know. I think the grade five teacher really didn't want to have his phone in his classroom. The grade six teacher, well, she said that she would borrow the school's phone for like, a month or two, see how things go. And then, by then, we were already set up to just function, him and me and so. And in the end, I don't have all I also don't have anybody that's like, fighting with me when I want to wing it, no, like when I just want to follow and go with the flow,

Scott Benner 13:54
just do what you want to do. Yeah? That part's nice not to have another person involved in the conversation. Yeah? Yeah. I don't know anything about ADHD, really, but is it a thing that can be medicated? Or, like, how do you attack the bigger problem? Yes,

Julie 14:10
of what I understand, the vast majority of patients will do much better with medication, mostly stimulants like the Ritalin and Dexcom of this world, and all those other formulation of the same and some of them will be able to it's basically a delay in your executive functioning, development in your brain. So you're you're not at the level where the rest of your body is. And whether or not that delay will catch up, or it will, it will always be behind you, don't know. And so the way to palate for that is to give medications. There's a set, mostly it's stimulants, but there's a couple other classes of meds that you can give as well.

Scott Benner 14:52
Are you qualified to describe that to me? How does that work? If somebody is going so fast that they can't cause. Trait. Why does speeding them up help them slow down? It

Julie 15:03
doesn't speed them up. It basically keeps the if I remember, well, it keeps the neurotransmitters in the window longer interesting, so that the study effect lasts a bit longer, and it gives them an ability to focus.

Scott Benner 15:18
Are there diminishing return to that medication, like, can it? Does the efficacy go as time passes?

Julie 15:24
The main two things that I would see with those meds is they are appetite suppressants, or at least the stimulants. I'm not talking about the other two classes, yeah. But the main the stimulants are appetite suppressants, so you end up with people that have less appetite, and then you need to monitor their weights, especially with children, to make sure that they're not losing weight over time. Some kids have to stop those meds because they cannot find a way to keep up with the weight I

Scott Benner 15:50
see. Does anyone do you think anyone remembers the episode of family ties with Michael J Fox, where his Sister Justine Bateman, who is, by the way, Jason Bateman's sister, her character, is using one of those drugs as a diet drug, and then he gets a hold of it during test time and uses it as like speed to like study for fun. Does anyone do you remember? Did you ever watch family ties? Being

Julie 16:15
French Canadian, my cultural background is, is very different. Family Ties is not something that I used to watch. I vaguely know about it,

Scott Benner 16:22
but, oh, you do Okay, yeah. I hope people right now are like, I remember that episode. Does everyone remember his friend's name, the dorky guy? Skippy? That's enough of this. Let's move on. Julie. Okay, so does your son use the medication?

Julie 16:35
He does. Yeah, he's using five Vance for now, and

Scott Benner 16:39
it's doing something, it not enough. Oh

Julie 16:42
yeah, himself and and us can tell. Because the problem is, it's a matter that you need to take early in the morning so that it can wear off by the end of the day and you can go to bed. Okay. Otherwise, people have insomnia, and so by eight, nine o'clock in the morning, if he hasn't taken it, everybody knows.

Scott Benner 16:59
Everybody knows, because he's scattered, yes, yeah,

Julie 17:03
like, yeah, and even him. I usually get a text by eight, nine in the morning, saying, Hey, Mom, I think I forgot my meds. Gotcha. So it works better for him anymore. It works better for us. I see there's less impulsivity. There's more focus towards activities that he likes and activities that he doesn't like. Does

Scott Benner 17:19
anyone else in your family have this like Do you have any other experience with it?

Julie 17:23
It's a highly genetic disorder. For the vast majority of people with it, other than some head traumas, it's a genetic disorder. And there's a brother of my mom that was diagnosed at 60 with it a few years ago at 60, at 60, but he struggled his whole life. Yeah, and now he has an explanation. He just thought that he was dumber than the rest of us. And in the end, he was not. He was having issues with focusing and about that functioning. How

Scott Benner 17:52
does that get diagnosed? It's,

Julie 17:57
it's kind of a clinical diagnosis, like, there's not like a blood test or anything like that. You can have a full evaluation with, like, either a psychologist or psychiatrist, or we went kind of the short way, like there's some questionnaires, like one page questionnaire that are asking you if you if you do certain things, like never, sometimes, often, all the time. And you have to show that it's across settings, meaning that it's not just a home problem, it's a home problem, a school problem, a daycare problem, a work place problem, interesting, and so it gets diagnosed based on your scores, or you, as I said, the evaluation that the professionals can do, you can try meds. Most people will see a benefit with stimulants, because obviously it, like some people use it as drugs to do exams, right? Because it allows you to focus intensely on something, but if you have a deficit, well, it brings you closer to normal about that.

Scott Benner 18:52
That's really something that's a lifelong thing. Or do you come off it once in a while to see if things have changed?

Julie 18:58
As I said, like there's a small portion of people, I think that by adulthood, have caught up, but the vast majority of people still need some help. Okay, later in life, either they learn strategies to cope and or they use meds.

Scott Benner 19:14
My last question is, do you know what the half life is? The half life of the man? It only stays in your system for 24 hours, right? Like so if you stop taking it, it's

Julie 19:24
less than that. It's less than that because it needs to wear off by the end of the day, otherwise you don't sleep at night.

Scott Benner 19:29
So you it's the thing you would see a benefit from immediately if you took it. Interesting. Yes, okay, cool. All right, that's very interesting. I appreciate you sharing that with me. You wanted to come on the show, though, more to talk about, like your job function and and what you do. So tell me about it.

Julie 19:46
So, yeah, so I've been, uh,

Scott Benner 19:50
diabetes comes with a lot of things to remember, so it's nice when someone takes something off of your plate. Us, med has done that for us when it's time for artists. Applies to be refreshed. We get an email rolls up and in your inbox says, Hi, Arden, this is your friendly reorder email from us. Med. You open up the email. It's a big button that says, Click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one us. Med has done that for us. An email arrives, we click on a link, and the next thing you know, your products are at the front door. That simple, us, med.com/juice, box, or call 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put the stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMS like the libre three and the Dexcom g7 they accept Medicare nationwide over 800 private insurers, and all you have to do to get started is call 888-721-1514. 887211514, or go to my link, us, med.com/juice, box. Using that number or my link helps to support the production of the juice box podcast. This episode of the juice box podcast is sponsored by the ever since CGM, ever since cgm.com/juice box, the ever since CGM is the only long term CGM with six months of real time glucose readings, giving you more convenience, confidence and flexibility. And you didn't hear me wrong. I didn't say 14 days. I said six months. So if you're tired of changing your CGM sensor every week you're tired of it falling off, or the adhesive not lasting as long as it should, or the sensor failing before the time is up. If you're tired of all that, you really owe it to yourself to try the ever since CGM, ever since cgm.com/juicebox, I'm here to tell you that if the hassle of changing your sensors multiple times a month is just more than you want to deal with, if you're tired of things falling off and not sticking, or sticking too much, or having to carry around a whole bunch of extra supplies in case something does fall off, then Taking a few minutes to check out. Ever since cgm.com/juice box might be the right thing for you. When you use my link, you're supporting the production of the podcast and helping to keep it free and plentiful. Ever since cgm.com/juice

Julie 22:35
box a critical care pharmacist for 17 years now, and we see all kinds of it's not a unit that has only obviously diabetics. It's very a mixed bag of surgical, medical, trauma, transplant, all kinds of people. I don't know where to start. I totally understand the frustration of the patients and their families when they feel like the medical team doesn't understand type one, and I kind of agree that they do, and they also have for a lot of them, at least in ICU, they don't have much interest for it, because there's so much to learn. ICU is a mandatory rotation for most residencies, I would think, and it's a world that of its own. Like, it's a world where all the things that you care about in the outpatient setting becomes not obsolete, but like, we'll get you out of here, and then we can talk about your blood pressure and your cholesterol and your diabetes and all that stuff. I'm not quite sure how they get taught in school, and it's the same for me, you know, like I talk with my colleagues, and it's the same, I try to to explain to them how things work and that the day you you change how you feed the patient. Well, obviously you need to look and change the insulin to go with it. But there's so many variables. No, like people are often times infected or insanely stressed out from the trauma that they are going through, and from the disease that makes them so sick they need to be an ICU and the ventilator that makes them breathe and or the physio that they they try to make you do, to keep you active, not lose so much muscle mass and keep your brain in a better place that It's really, really hard to adjust any of this until you're stable. So

Scott Benner 24:24
if the people that you're working with don't seem to understand and maybe don't have a ton of interest in it, you do now, because your son's been diagnosed, but prior to his diagnosis, working in a hospital setting, and what was your understanding?

Julie 24:37
I was exactly where I am now, and I was exactly like the rest of them, not because we don't care about the patient, but it's just sometimes it looks if even to us, it looks like, oh, it's diabetes. Well, to them, in that setting, it's even more, oh, it's diabetes. It becomes easier oftentimes, to use an insulin infusion, because then you. You, you can tweak it as you go, and then when the patient is more stable, we can go towards like, B bit the basal, bolus, insulin, as long as you have some degree of stability

Scott Benner 25:11
like so it feels like to me a little bit like you want, you want me to understand that you don't think that the lack of knowledge is, I don't know what the right word is. It's not malicious, right? Like, but

Julie 25:26
no, diabetes just looks more random to them, okay, than it does to me. Probably, how? But even then, even even I take guesses on how to adjust things, no, like, I need to have the confidence to just say, let's try this and see what happens. Even

Scott Benner 25:44
though there's a mathematical equation that can help you set up a person's basal insulin, insulin to carb ratio, insulin sensitivity. It's based on their weight. You know, it's a it's a starting place. It's based on their weight, their amount of activity. That's not random. It's just a thing you need to learn before you you know what I mean?

Julie 26:02
Yeah, right. But in the acute setting, all those things go out the window. No once you have a massive infection, or you have a trauma, or you you're sick from whatever you're sick of, but that requires you to be in ICU, all those things change, even if you knew exactly their parameters, those parameters have changed significantly.

Scott Benner 26:24
No one's going to try to fix it right? Like there's no there's no world where you come in in that acute situation and you know, they say to you, Hey, how's your blood sugar? And you go, my a one sees nine and a half. It's not great. They don't stop and go, Okay, well, we'll fix your insulin settings so that we can get it closer to being correct for this day. Like nobody really does that, they go, Okay, no,

Julie 26:46
obviously, but, but they just put you on an insulin infusion initially, probably with a target that's a lot more lax than what you would target at home. That being said, the patients that come in with anyone at C 10, you don't hope to fix them fully by the time they leave the hospital. Obviously they have bigger issues. Yeah,

Scott Benner 27:04
but see, that's funny, because when you say because when I hear people say, it's not just you, and I'm not arguing with you, I'm interested in the conversation. But when people say no, obviously they don't fix that, I don't understand that. So if I came in, for example, and I had recently, I don't know, I have a big laceration on my leg, and it's emergency, and I come in and they say, do you take any medication? And I said, Oh, yeah, I do. I take a heart medication for an arrhythmia, but I know I don't take the right amount with the hospital. Say, Well, how much you taking? And then call in a cardiologist and have the cardiologist come and go, Hey, you know what? They're right. They're not taking the right amount. This isn't right. Will change there. Wouldn't that happen?

Julie 27:42
It would happen. You hope by the time they go home, that being said, a lot of those things are offset by the fact that when you're really sick, often times you need meds to keep your blood pressure up, and all those meds are stopped because they have the potential to make your blood pressure even lower. So I said all the stuff that you do chronically is kind of on pause. The stuff that we need to restart right away, right away, we will, but there's a lot of things that become secondary to you surviving this. Is

Scott Benner 28:10
it not true that most of the reasons people find themselves in emergent situations is because the stuff that they're supposed to be doing chronically they don't do correctly some of it, yes, yeah, but it still doesn't get addressed, though.

Julie 28:23
It will get addressed probably closer to discharge, and it needs to be addressed by the family dog after that, because, as said, when you're not in your home setting, some things are going to behave differently, no, if you're if you're stressed because you're in hospital, maybe your blood pressure will be higher than it would be sitting at home in your cozy environment that you know, sure, and so if we adjust your blood pressure meds to meet that target on the ward, then you go home and you go hypotensive, and all those like blood pressure is is one example. But like a lot of things, flip upside down when you're in the hospital, just because you're you know you're sick, your body knows you're sick, and you don't react the way you would expect to. Plus it for blood sugar, they are still nobody has a Dexcom in a hospital, right? Nobody has a as a libre everybody's doing like, four times a day pokes, plus when you're worried. But in ICU, when a patient is sedated and intubated. Don't necessarily tell you that they feel like, Oh yeah, I'm starting to have their shakes, and so you need to play it very safe, because you don't want them hypo All right. I

Scott Benner 29:29
mean, I understand it's just comes down to the fact, I think of a of the layman's expectation, the hospital is the place where I go to see medical people. If there's something wrong with me, they're going to address it. But in more honesty, a hospital is a place for procedures and for emergencies. It's not really to get

Julie 29:49
your health in order, or at least it can be a start of something, but it needs to continue in the community afterwards.

Scott Benner 29:55
Yeah. So what falls apart after that? The patients go

Julie 29:59
back. To their own habits. That's one thing the family dogs. Some, some are very good at it, and some maybe not so much, because they deal for with a lot of things. Like family dogs have a job that is very difficult, in the sense that they need to be able to flag for a million different things that could go wrong. Yeah, they're probably more cautious than aggressive by fear of of causing, as I said, hypoglycemia, hypotension, like stuff that in the immediate moment could be risky, because if you have somebody that you know, if you have, like a 75 year old woman that has hypotension or low blood sugar, they might fall down the stairs, and then they become somebody who will probably not make it in the end, because then they broke both in their body, or they became paraplegic. Or, you know, it's a big it starts a spiral that doesn't necessarily lead where you want to go. So I would assume that that's part of discussion, like the reality of where people live and what they do and the decisions that they make for themselves.

Scott Benner 31:06
Does the phrase pass the buck translate for you?

Julie 31:09
Yeah, pass the puck to the GP. Yeah, for sure,

Scott Benner 31:12
the buck. But I love that you said puck and you're Canadian, pass the buck. It's a, it's a, just a term that means, make it someone else's problem, pass it on to the next person. And it just, it feels like that. It feels like the patient is saying, Well, the doctor should tell me what to do, and the general practitioner says, Well, I told them what to do, and they don't do it. And then you get to a hospital setting where they go, that's not really our job. You know, that's somebody else's job. So there's three people involved in this trifecta, and not one of them steps forward and says, Hey, you know what? I'm gonna make up the deficiencies of the other two here. I'll fix this. That's not the case. Everyone just passes it back and forth to each other, and that sounds like I've had a lot of these conversations this year, Julie and over and over again, that's what I'm hearing. I'm hearing that the doctor didn't tell me the system's not set up for this. If you had better insurance, I don't have the time to sit with patients like that. They're all, I mean, reasons, but they sound like excuses. If you're at home, you know, if you're at home with a 10, a one sitting, your life's being shortened. They're excuses, right? They're not reasons. I mean, not unlike a lot of societal conversations, this is as far as this conversation goes, because there's never anybody in any scenario willing to say, hey, you know what? You're right. Throw that on me. I'm going to take care of it. There's always for good reasons. I'm certainly not coming down on you, but you said earlier, your son's blood sugars stay higher than you want them to be because you have limited resources too, right? So, you know, I keep having these conversations looking for an answer, but the answer over and over again, seems like you know, this is it. We'll just like, see where the chips fall. And some people get lucky, and some people have brains that lead them to understanding their diabetes better, or the tools or the, you know, what have you, the education, and they actually follow through with it. And some people don't, and those people are lost, and there's nothing we can do for them. Can that be the truth?

Julie 33:20
A certain extent, you're probably right, yeah, and not every professional is a go getter same way as like, there's a lot of times, I guess, over time, I understood very well that a lot of things, it doesn't matter who does it, as long as it gets done and I end up doing a lot of job where I work, that is not exactly my job. Oh yeah, hopefully, oh yeah. But some people are going to be like, I will fix problems, and some people are going to be shoveling in the the next person's turf, yeah. And in the end, yeah, that definitely happens. Not everybody, as I said, is a is a, let's get this fixed.

Scott Benner 34:01
The way I always think about it is that it sometimes seems to me that people work harder at not doing their job than it would have taken for them to do their job. You know, there's so much effort put into not doing something. It's fascinating. It's funny. Like to give you a personal perspective, I guess that's not my personality, so it's confusing to me. I think that people might think, oh, Scott's trying to get to the bottom of how this happens so we can fix it. I'm just confused by it like I don't imagine it's fixable. I'm just baffled by a person who has a medical issue that says it's alright if this kills me. I'm baffled by a doctor who looks at somebody who's on their way out and goes, they should have tried harder, you know what I mean? Like, I don't understand that at all, but my brain can't make sense of any of that, and so I keep having these conversations, hoping that someone's going to pop up at the end and go, You know what we should do, or that this big idea is going to jump up into my head. But so far, the best idea I come up with is make all this information available on a podcast, and the people who want it, who can find it, and the rest of them, I guess, won't, but at least they had a chance.

Julie 35:11
But this is why podcast is so valuable. Yeah, I know, but it's not but it's gonna be valuable for the people who are go getters that want actually to do something about

Scott Benner 35:22
it, or even are lucky enough to a trip over it, because there are, oftentimes, people are go getters, but the help they find isn't valuable to them, but they stick to it because they think they found it, and then they have middling results, and they say things like, oh, diabetes is so hard. I mean, I have a seven and a half a one, and say it's the best I can do. You know, like, like, that kind of stuff, when they just don't have the other ideas. It seems like to me, as crazy as it might sound, because I'm the one that makes the podcast, and I do know how valuable it is to people, because I get to see the feedback, but

this shouldn't be the answer.

You know, I'm saying like, this should not be the answer. And yet I understand that it is sometimes because I had a conversation with a like a lifelong type one just this morning, person I hadn't spoken to in such a long time, and they were telling me about their burned out and they just don't take care of themselves. And and I was like, Well, you know, what is it you're not doing and it's like bolus thing for food. I said, why not? I just think, can't bring myself to do it, and I didn't even know what to say. I said, you should probably get a therapist. Because what I wanted to say was, just do it. I mean, who cares if you want to do it or not? This is an obvious one. It feels like they sunk to the bottom of a four foot pool and can't go to the trouble of standing up and that they're like, No, you don't understand. Like I'm depressed, or I just can't bring myself to do it, or I'm so burned out I don't understand that's the thing Julia. I don't get I don't under I don't get so burned out that phrase, I don't understand it. I don't have diabetes, but I've lived a pretty horrible life. At times, I've been flat broke. I've been, you know, destitute as a child, I don't understand you don't get up in the morning and fight. That's the part that I can't I can never wrap my head around I guess so. Anyway, it's depressing joy,

Julie 37:18
but it's a reality like you and I are more intrinsically motivated than the average people. Probably

Scott Benner 37:27
I don't even know. Like, I can't even tell if that's true. Like, I don't want to take credit for something that feels so human to me. But I guess the same would go to, you know, finding fault with somebody that's, you know, experiencing something that's so human to them. Like, maybe a lack of motivation is just their is their base setting, you know, which I don't know that that makes it bad. It just makes it who they are. And if you give that person a life without diabetes, they're probably okay, but you drop diabetes on top of them, and now that's a person who's going to struggle more than the next person does, like, you know, when Jenny's on the show and she talks about her care. It all just it feels so easy, but I try to remember it's easy because that's her personality.

Julie 38:09
Yeah, you don't need to tell her that she needs to do it. She just knows and does it. Yeah, but for a lot of people, it feels like so much effort.

Scott Benner 38:18
If we translate that back into the medicine. Are there many more people who lack the motivation to make a difference than there are those who want to make a difference?

Julie 38:28
Um, what do you intersect more these days, post covid With, with all the trouble with mental health, there's a lot of people that are not able to get themselves out of the hole that they dug or not? Yeah, that's a heavy burden for the system. No, yeah. Because even, even if you you fix them from one standpoint, like you take months and months of rehab and all that stuff, it doesn't mean that they're gonna get to the end and not do exactly what they did in the first place.

Scott Benner 38:58
And so those people are, I guess it's a burden to the system because they're patients, but also I'm going to assume a number of them are actually employees, too, who are who are experiencing these same things. Now, if everyone's a little more depressed than they used to be, there's going to be more burden and fewer people to help you dig out of it. Yes,

Julie 39:19
and like, if I look where I work, covid was extremely difficult. Like anywhere else, we've lost a lot of nurses that went for better quality of life jobs that went for some of them probably are on sick leave, and I just don't realize that they're on sick leave, but a lot of them have left to go for a job that's not so emotionally taxing. So the people that come in to fill the gap are new. They're not, they're not the people that have the experience of the very heavy ICU that takes the people that don't fit anywhere else, right? And so, yeah, you end up with people that are very competent nurses, but it takes time for them to get on top of the skills you need to. Keep people alive and those kind of situations, right?

Scott Benner 40:02
Yeah, so there's a training period that's going on, and possibly you've hired people who, in the past you would have overlooked, because they wouldn't have been what you wanted for the position. But now you might have to take them, because that's what that's what exists,

Julie 40:15
probably, and that exists also in hospital pharmacy, in the sense that there's extra school, and you can do past your your basic pharmacy degree, typical hospital pharmacy, but there's just a few of them. And so those people, when you hire them, they're like gold stars, and they they can pick up and they already know what they want to do, and they're very proactive. But then you end up having to hire some people who have been working in the community for a number of years, or have been just finishing their degree, and those people to get them up to speed in a tertiary center with like, very specialized area and very sick people, it takes time, and it's not like you can give them a pill and they suddenly know everything, like everybody in that place learns new things Every day, even after 25 years of working there, I wonder

Scott Benner 41:03
how much AI, for example, will help in the future with medicine and with the patient side and the follow up like I wonder if some of these people could be caught by their phone literally telling them, you know,

Julie 41:21
don't forget, and refilled your meds for the past two and a half months. Yeah, right, I could definitely see that. And there's already like, not exactly AI, because it doesn't think by itself. But there's already like, Alberta, and that exists everywhere in other settings too. Yeah, we bought a big software that replaced everything a few years back. And that software makes connections or allows for to get to documentation from the past, so much more easily than paper charting. And it flags for interactions, it flags for odd doses of of some drugs, it flags for a lot of different things. And so that allows to have the prescriber not necessarily know all that stuff, but gets flagged, sometimes flagged too much and flagged for stuff that's insignificant, but yeah, the computer is helping out to to have to catch more potential mistakes or dangerous doses?

Scott Benner 42:26
Yeah, I think it has to be a combination. I really think that. I mean, I'm doing something right now. I don't think I've said it out loud on the podcast, yeah, but I'm behind the scenes. I'm busy cataloging the podcast as audio files transcribed by AI so that you can, one day ask an AI bot a question about type one diabetes, and it will access the entirety of the lifetime of the podcast to find the answer. That's wonderful. So yeah, try to imagine the internet, but it's just for type one diabetes. And this, you know, this AI bot can literally take your question and go find all the answers and give you an amalgam of that answer. And I'm, I'm just doing it, you know, I'm in the beginning process of it, and I'm very scared that at some point it's going to become a financial burden that I can't carry to make it happen, but so far, it's something I'm able to do behind the scenes. It's tough when you live on ads like you know, it's not a thing I can sell ads on or anything like that. But I want to try to leave it behind, because I'm very scared that everyone's conversations and thoughts, you know, that have been poured into this now to almost 1200 episodes. I don't want them to be lost, because I think, I think the the secret to a lot is held within these conversations in this podcast. So that's one of the things I'm trying to do. But I could also see where you could, one time, go in and tell this, tell something one day, an app. Look, I have type one diabetes. I need to be reminded this is where I get my insulin from. I need this to happen. Like, I need you to remind me it has to be ordered three months before. Or, you know, I have to make sure my insurance covers it. Like, keep bugging me, keep telling me what to do, prompt me to do these things. Because I think if that doesn't happen. It's difficult, it's too much for people, and it doesn't like the care of a chronic illness. Doesn't mesh with a modern American lifestyle. Does that make sense? Yeah, yeah, like you said to me this morning, I you know, I said, How are you said I'm tired, right? And you're tired because there's more things to do than time, and so you're giving away sleep to do things. And then I said, I just woke up at 430 this morning to do things I didn't have time to do. If I would have woken up at seven o'clock, and I'm not going to be bored today. And in a life that goes like that, how do you remember to order your. Android in six months, you know, like that kind of stuff.

Julie 45:03
That's exactly the kind of challenge I have with ADHD, because that's what the that brain is lacking, the ability to remember, to do the little things like those. The people with ADHD end up in trouble with paying the bills with appointments. They're like, chronically late or disorganized and unable to have the right things when they need to.

Scott Benner 45:26
Yeah, but I think it's more people than just ADHD. I think that, yeah, where ADHD is

Julie 45:31
5% of your population, which is one in 20. So if you look at a room with 100 people, there's 550,

Scott Benner 45:38
I'm saying that, that even if it's not diagnosed. ADHD, I think more people have that than not like I think you see, in a family setting, you know, a mother a father, in a classic family setting, and a bunch of kids, somebody takes care of things. Everyone's not on top of everything, no.

Julie 45:55
And if it's, if it's a genetic, genetic condition, you're likely to have parents that are just as messy as their kids. Yeah,

Scott Benner 46:01
right. And then good luck. And I've had those conversations with people too, where they're like, Listen people as adults. They say, look, as a kid, I was not on top of things. My parents weren't either. And sometimes you hear it as, like, addictions too, like, I didn't know what to do with my diabetes. I turned to my parents, and they're using meth, so they weren't much help. That's not a thing I made up. That's a thing from an actual conversation. So you know, like when there's all these things going on, you're already seeing the ball being dropped in so many walks of life, this is the wrong path to go down. But a lot of people's trouble in day to day life stems from their own poor decision making. And it's not like poor decision making, like they set out and did the wrong thing, or they decided to snort coke today instead of going to work. I even mean like simple, make a left, make a right, do this, do that, you know, pay the bill today. Pay it tomorrow. Like people so frequently, make these little micro decisions poorly that it it throws them in a completely different way. They don't even realize it's happening. And, you know, like, when that's your MO, big things are really going to get booted you know, like, like, the big things are really going to get messed up. Like, when you see somebody who is, I don't know how to use an example, like, when you, when you, when you see somebody who goes to the gym three days a week, and they're fit and they eat well and everything. If you go look at their life, their lives are very much like that. It's because it's who they are. And if you go find people whose lives are scattered, you'll often see that their health is scattered, or that other things are dropped. A lot of balls are being dropped here and there. I don't say it's out of malice. I just think it's who they are, and then that's how it goes. I joke with my wife all the time, if it wasn't for me, we'd be broke, and we all laugh about it, but it's true, like my wife doesn't pay attention to money the way I do. If it was up to my son, he wouldn't have thyroid medication. He's 24 years old, like, I'm still the one that says, Hey, do you have your thyroid medication? You know what I mean? Like, I'm the person in that house. Now, my wife is completely capable. I'm not saying she's not. My son's capable. Everyone's capable, but there's only one person in this house that has a caregiver mentality, and that's me. And so if you don't have that, and you're by yourself, you need help. You just do and you know, I'm sorry. It's just, it's, it's upsetting to me, because I get to, I get to hear all these conversations from different perspectives all the time.

Julie 48:33
So sometimes I'm used to be, I used to be that person in my household, too. I imagine you are, yeah, the one that plans ahead. But that being said, I calm down, probably my my own anxiety by planning.

Scott Benner 48:46
Oh, really. Oh, that helps you. I would love to stop helping people.

Julie 48:52
No for me, it it helps because otherwise I get upset at as how messy they are. No, like, how disorganized, how I don't know, so planning helps me.

Scott Benner 49:04
Yeah, I get that. For me, it's all very much about health and forward motion. I only get upset if people aren't healthy or moving in a good direction, like those are the things that upset me. If I see my family struggle that that's where it gets me. The rest of it, they can do whatever they want. I don't care. And there's a big part of me that would like to forget about everybody and just be a lazy person once, but I don't even know what that feels like. I realized the other day I was watching a football game standing up, and I was like, why am I not seated while I'm watching this? And I really I was like, I was in the kitchen, and I'm like, why am I not like? I woke up in the morning. I said to my wife, I really want to watch that football game at six o'clock tonight. She goes, nobody's stopping you. I was like, great. And then six o'clock came, and I'm like, you know, I start watching the game, and I'm watching it from the kitchen, and I realized, I'm like, I'm doing the dishes. I'm cleaning up. I made some food. Food. Like, no one asked for food. I just started making food. I was like, You know what? I have sausage and shrimp. I think I could put a pasta together. Do I have tomatoes? I do. I made a sauce. Like I did the whole thing. And I'm like, watching the game, and I'm like, No one even asked me for this pasta. When it got done, they were like, what's this? I'm like, It's dinner. They're like, Oh, okay. And then I had that thought I was done and I was cleaned up, and I was like, I'm not sitting down and watching this football game. And I thought the majority of Americans watching this game right now are sunken into some sort of a sofa watching this game. And I'm not. And I just, I don't know what that is about me,

Julie 50:33
just like you, I would be running in circles too. Yeah,

Scott Benner 50:37
I don't even, I don't understand it. I came in here this morning to do something that had to happen in this room that had nothing to do with the podcast. And then I realized I could do it while I was doing something else. So I sat down and was hanging I was writing out bills. Basically, I was paying bills online. So I was paying bills online on on one screen and on. And I happen to be lucky enough, I have two screens. I record the podcast on one computer and I do my work on the other. So on the one computer, I was paying the bills, I turned to the other computer and I started writing an email to the advertisers about why podcasts are such good ways to use your advertising dollars. I was sending them facts and figures and like opportunities to to they're all already signed up this year. I'm like, selling them for 2025 already. I'm like, it's in January, Julie,

Julie 51:35
I hear you. I'm the same way.

Scott Benner 51:38
And I'm like, and I'm putting this email together. I'm like, Ooh, is this good? And I'm paying my bills the same time. But I'm a very relaxed person. I love calm. I love sitting around. I love being relaxed, and everything else. It's when I get around other people that I care about that I worry about them more than I do about myself. And so I just everyone needs a little bit of that because, I mean, I'm I have enough of it for everybody who listens. And I actually, I saw somebody respond to me on Facebook the other night, and she said, I'm just here to say how much I appreciate the effort that must go into making that podcast. I know many of us here would not be as healthy without it. And a lot of people came in to kind of like, jump on and say, Yeah, me too. And I was like, Oh, this is the one place where my energy doesn't get split between people, because the delivery service works the way it does. I'm basically talking to one of you, but it's many 10s of 1000s of you that can, can still hear it. It's still my one effort of time. But I don't know, like, I want everybody to be okay or better than they are. And it can be frustrating sometimes to look up and see that they don't want that for themselves. They need it, and they're looking for it, but they don't want it enough to do it. I guess it's hard for me to say, anyway, I'm so sorry. Don't be sorry to kind of to go back again. You said, like 20 minutes ago. You try to explain this to people in the hospital, like this, your new understanding of diabetes, but you don't think they get it, or they don't have time for it, or they what is it? It's not

Julie 53:17
necessarily lengthy discussions. I need to take the opportunities that I'm given and not expect to have a three hour discussion with anybody, because, as I said in ICU, everything is not everything, but a lot of things are foreign to everybody. No, it's a very different setup. But the one part I can do is when I make suggestions on how we could adjust people's insulin, I try to give an explanation to go with it. You know, sometimes you have people that come in that are, where are the people who get a tray and eat food? A lot of them are fed either through their veins with parenteral nutrition or with two feet through their nose in the formula, yeah, form. And a lot of times people come in, and not often times, but once in a while you have somebody that comes in that just has basal and a correction scale, and you kind of have to explain to them that this will work until it doesn't work. If your patient starts throwing up, then your basal is too much, and you need to kind of AIM roughly for like a 5050, and you have to explain to them that when you're fed around the clock like that, you cannot just put the B bit on the usual like Umu log and Lentis or whatever it is, and hope that it's going to work. You actually need to have your basal and then you need to have a proper human and R every six hours, because your carbs don't go in like a big meal at once. They come in trickle over time, and you have to do it every six hours, no matter how convenient or not convenient it is to get poked at midnight, it becomes the way to keep a better care of your blood sugar, because we don't see what happens in between the month. Ring, you know, like when they poke four times a day, plus when they're worried. That means that you get four numbers a day. You don't know what happens in between the two. You don't know if you give them your log and they bought them out, or they get close to it. You won't know unless they are actually able to tell you, or they physically show signs that they are hypo and same for the highs. And then sometimes people, there's often times people with delirium, that the fact that their blood sugar swings around or goes all the way to three, four hundreds during the day is not necessarily taken into account as part of why their brain is functioning so poorly. Yeah, I know. So I'm able to, as I said, not necessarily have a three hour discussion at once about diabetes, but like, put bits and pieces of explanation as we decide to to make changes, or as things change. Patient was eating a normal tray and is now tube fed. Or

Scott Benner 55:56
is it not possible to take a small squadron of nurses and, like, really drill down and teach it to them. Take five of them and just pull them aside, you know, a couple of hours a week.

Julie 56:07
And the unit I work on has 150 nurses,

Scott Benner 56:11
yeah, but I mean, if you like to put a seed down, like to put a handful of them into the pool that really understand insulin, how it works, and how to manage and then, you know, start off by putting them on the people with diabetes, and then pair them with somebody else to watch what's happening till they can learn. Like, is there not a way to teach people this? I mean, I learned it myself, and I teach people without even them being with me. Like, is there not a way for them to learn how to do this?

Julie 56:40
The nurse usually has very little to do with the adjustment of the regimen. Like, other than what, no, when they aren't an insulin infusion, they're the ones that they're given a range of blood sugar to target for. Yeah, I know. And then they will adjust the infusion up and down to achieve that. But beyond that, like in the B bit, per se, they don't necessarily adjust. They are going to do what they're told, right? And they have also, a lot of them have quite a bit of experience that makes them refractory to change,

Scott Benner 57:12
yeah. Oh, you can't teach an old dog new tricks. Is that the same?

Julie 57:16
No, but when we're, as I said, like when we do rounds, like when we spend half an hour talking about each patient every day on rounds. Well, the stuff that I teach a resident through little bits and pieces while the nurse is there to listen to as well. And so you hope that some of it, I don't want to become also a one woman show that talks about diabetes all day long, but doesn't do the rest of it. Yeah, yeah, there's limitations, because even my colleagues wouldn't be, I don't think would want to do any of this, like they would feel at loss, just like I was before my son got diagnosed. Yeah,

Scott Benner 57:51
I hear it, okay. Well, this is depressing,

Julie 57:57
but this is but it's just a context that's very difficult with people that don't have the reflexes that you and I have every day,

Scott Benner 58:05
yeah. Well, also it for people listening. What you have to take away from this? Have to take away from this, in my opinion, is the hospital is for emergencies. They are very good at emergencies. You break your arm, you have a heart attack, your gallbladder fails, they're going to help you, and they're going to do a great job at it. You know, you have cancer, you go to a cancer center. Those people know how to help you, like that's that's the stuff you want to go there for 100,000,000% if you're having heart issues because of your type two diabetes has been out of control for years. And you go to the hospital, they're going to help you as best they can with the emergent problem you're having with your heart. They are not going to help you fix your type two diabetes. And I think that that's mostly what we have to change in impatience, is the idea that there's a magic place, somewhere where everyone knows everything. And if I go there, it's all going to be

Julie 58:56
fixed, you know. Or they will, they will get the ball rolling, but

Scott Benner 59:00
you have to pick it up and keep running with it exactly. Yeah? Well, in a world where people can't remember to take vitamins, I'm sure that this is going to be no problem. Everybody's going to take care of it right away. You gotta, I hate to say something cliched, but you have to prioritize yourself. Yeah, obviously, yeah. I mean, it is obvious, but doesn't happen. It happens for nobody, hardly ever. And when it does happen for them, they're they're doing it on Instagram, and we're all laughing at them for being in the gym for nine hours a day. There's not many examples of just average people putting in the average amount of effort that keeps you healthy, instead of, like, you know, making it their entire life so that they can stay focused on it, which I think is, is partly true. Like, I mean, I You see, that was one guy, he, like, runs like, 10 miles a day or something like that. And I'm like, Yeah, well, that's your brand. You sell that. Like, you have a podcast where you make money talking about how you run all the time. I can't go running for 10 even if I could run 10 miles for. Am I going to find that time at I make my money a different way? I have to be here in front of this computer doing this thing, I don't know, just do the best for yourself. You can. But don't give up, and don't ignore it for God's sakes, like, just put your best effort into it, you know. Or otherwise, you're going to be 63, years old one day sitting in a doctor's office, and they're going to tell you something that's going to sound like, Oh, that wasn't supposed to happen until I was 80. Not a lot of coming back from stuff like that. You know, at a finite amount of time to take care of yourself, the work you put in now, almost in everything you get paid back later with it. And that might be some of the problem, too, in a society where everybody's used to getting something immediately, you know, the work you don't take a vitamin today to feel better today. You know you might not even notice it, even when it's helping you. I think that's hard to wrap your head around. Sometimes, anyway, you have any parting words, Julie,

Julie 1:00:54
yeah, make sure that you're part of the priorities. Self care is definitely worth it. It's worth it to let go of some little things that, in the end, don't matter that much, to make some space for yourself.

Scott Benner 1:01:08
Yeah, that's good advice. Also, can I show off a little bit from my high school French class? No means nine.

Julie 1:01:14
Good start. Good start.

Scott Benner 1:01:16
It took me three years to learn that. I don't have, I don't have that kind of time to put into the rest of it. I might know a couple of the other numbers, but I don't want to show off, and my accent is not good. Save that for the next podcast. Yeah, yeah. We're gonna save it where I go, like, I can maybe get this, yeah, maybe five or six I can get to. And then there's some loss in there, and I know enough means nine, and then that's pretty much it. I do remember my French teacher was very pretty, but that didn't seem to help anything.

Julie 1:01:47
See my husband, he's born and raised in Edmonton, where we are, and he told this French teacher in high school, like, why am I doing this? For not knowing that he was going to marry me? So obviously,

Scott Benner 1:02:00
he had a good reason. By the way, if my French teacher was in her mid 40s, as I expect she was, that was 37 years ago, she's 82 now. So hurry up and figure your stuff out, because time goes by real quick. Bud down, if you're out there, I didn't understand a goddamn thing you were saying. Hilarious. All right, hold on a second for me, Joey, please.

A huge thank you to one of today's sponsors, gevok glucagon. Find out more about Chivo hypopin at gevoke glucagon.com, forward slash juice box, you spell that G, V, O, k, e, g, l, U, C, A, G, o, n.com. Forward slash juice box, a huge thank you to ever sense CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days with the ever since CGM, you just replace it once every six months via a simple in office visit, learn more and get started today at Eversense cgm.com/juicebox, the conversation you just enjoyed was brought to you by us. Med, us. Med.com/juice, box, or call 888-721-1514, get started today and get your supplies from us. Med, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective, the bold beginning series from the juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to juicebox podcast.com and click on bold beginnings in the menu. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The juicebox podcast. Hey, what's up everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording, doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.

#1277 Grand Rounds: Dr. Tarlow

Dr. Stephanie Tarlow is a type 1 and an endocrinologist.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to Episode 1277 of the juicebox podcast.

Stephanie is a 33 year old type one who happens to be an endocrinologist, and she's here today to add to the Grand Rounds series. Nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. When you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juicebox. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40% at cozy earth.com and if you are a type one, or you're the caregiver of a type one and you're a US resident, I need you to go to T 1d exchange.org/juice, box and complete the survey. Completing the survey helps type one diabetes research to move forward. It may help you. You'll find out more about that after you complete the survey, and it's definitely going to help me. T 1d exchange.org/juice, box should take you about 10 minutes.

This episode of The juicebox podcast is sponsored by touched by type one, touched by type one.org and find them on Facebook and Instagram. Touched by type one is an organization dedicated to helping people living with type one diabetes, and they have so many different programs that are doing just that. Check them out at touched by type one.org this episode of The juicebox podcast is sponsored by the Dexcom g7 made for all types of diabetes. Dexcom g7 can be used to manage type one, type two and gestational diabetes. You're going to see the speed, direction and number of your blood sugar right on your receiver or smartphone device. Dexcom.com/juicebox, today's episode is sponsored by Medtronic diabetes, a company that's bringing people together to redefine what it means to live with diabetes. Later in this episode, I'll be speaking with Jalen. He was diagnosed with type one diabetes at 14. He's 29 now he's going to tell you a little bit about his story. To hear more stories with Medtronic champions, go to Medtronic diabetes.com/juicebox. Or search the hashtag Medtronic champion on your favorite social media platform.

Dr. Tarlow 2:47
Hi, juicebox. I am Stephanie tarlow. I'm a physician assistant that specializes in endocrinology and specifically diabetes at OHSU in Portland, Oregon.

Scott Benner 2:59
Do you have diabetes yourself?

Dr. Tarlow 3:02
I do. I've had type one diabetes since I was 12 years old. So this year makes that 20 years. Oh, you're 32 okay, I'm 33 very soon. Oh, happy

Scott Benner 3:14
birthday in July, perhaps Thank you. When my birthday is June, 27 Oh, well, then really, happy birthday.

Dr. Tarlow 3:20
Thank you. Birthday month.

Scott Benner 3:23
Yeah, do you do like a whole thing? No,

Dr. Tarlow 3:25
we typically go out to Eastern Oregon on this little lake for the weekend, which is nice, very

Scott Benner 3:30
nice. Well, I hope you enjoy it. Thank you. I'm gonna find out a little bit about your diabetes first. So 20 years ago, pretty long time ago, actually, Arden is, hold on. Arden's 20 this year she was diagnosed.

Dr. Tarlow 3:44
We were diagnosed the same year, from what I could tell, 2004

Scott Benner 3:48
is that right? Arden's born 2004 diagnosed, 2006

Dr. Tarlow 3:53
got it, yeah, I was diagnosed in 2004 Okay, you

Scott Benner 3:55
got two years on her. So you're winning some sort of thing that I don't think comes with an award, but so, so management back then, I'm very, very familiar with, did you get a pump at any reasonable distance after your diagnosis? No,

Dr. Tarlow 4:10
I was very against the pump and anything on my body. For that matter, I started out with the mph and regular insulin mix syringes for like, the first year. And then I remember going back a year later to have more education and learn about like carb counting in terms of, like, using ratios and varying the carbs per meal with pens. And that was like the biggest game changer, rather than having I remember my parents getting like, low carb ice cream. And I was so devastated, thinking, this is my life. But, you know, there's so much more flexibility with not fixing carbs per meal. That

Scott Benner 4:49
was it. It was just the ice cream. It said low carb on and you're like, oh yeah.

Dr. Tarlow 4:54
It was so sad. I just remember my grandma made everyone like parfaits, and mine was sugar free chocolate. But soft and stuff. I was like, God, this is so sad.

Scott Benner 5:03
You're old enough to feel it too at 12, huh? Yeah,

Dr. Tarlow 5:07
I was very much a kid that, like, would come home from school and grab a sprite, or, like, have a Costco poppy seed muffin. And so that first year was really hard, because I think I was having, like, 45 grams was the amount I was eating for breakfast, lunch and dinner, and so, yeah, that was pretty restrictive. And then it took me a very long time to give myself a shot by myself. Like the nurses in the hospital were incredible. Usually, they make you give it, you know, try to make you give it yourself by the time you leave at 12. And I was just not having it. So it took me until my parents went out of town, and I did not want my friend's mom to come over and give me the shot that I just was like, I'll do it myself finally. But it would be times where we'd be sitting down and I'd be like, Okay, I'm counting to three, and then I just say one, two, and then, like, 30 minutes would go by. And if my dad ever did it before, too, I would just cry and cry and cry. So yeah, I had a really hard time with the needles. Interesting, so I definitely empathize with my patients when they have those needle phobias. How

Scott Benner 6:13
old were you when you finally did it yourself? When that neighbor was the only other answer?

Dr. Tarlow 6:20
I was probably 13 and a half or 14 couple

Scott Benner 6:24
years. You made it a couple years? Yeah, I um, it's interesting. First of all, it's crazy that you got NPH and regular in America 20 years ago. We might bring that up again, but Arden, similar situation like Arden, got a lot of needles, obviously, in the first handful of years, no one even talked to us about a pump. For years, they never even brought it up. I didn't even know to ask about it, and so she probably had. I remember doing the math back then, we probably stuck her 10,000 times between needles and finger sticks, wow, before she got a pump when she was like four and a half, so, like, in the first two years or so, but she was really young, and I've told this story before, but like, you know, there's once in a while you're like, I think this pump site is bad. Like, I'm going to inject to like, you know, like, see, and even that stopped happening because we were just on a really good roll with OmniPod for a long time. And then one day I was like, Hey, we're gonna have to inject. And when I She's like, okay, like, she like, just was like, Okay. And then I got out the syringe, and she kind of coiled recoil, and she goes, what is that? And she wasn't being like, funny. She was like, what is that? I was like, it's a needle to put in the insulin. She's like, whoa, whoa, whoa. And then then it was crazy, because I was like, Oh my God, you don't remember the 1000s of these that you've had. Like, that's crazy, you know? And, but she didn't, and that's

Dr. Tarlow 7:46
super interesting, actually, yeah, yeah. I mean, it makes sense. Like, I think there's a lot of times too, like, nowadays I think we get kids on Dexcom so quick, like, they don't remember that small little period of finger sticking,

Scott Benner 7:58
no, I agree. And then when you go to do it even now, like, I'm like, alright, and check your blood sugar. And she's like, and she's like, Wait a minute. Like, I got the Why am I wearing this thing? And I was like, so but anyway, like, it happened so infrequently that we didn't realize for a long time, like, Arden had a pretty significant needle phobia, and it didn't rear its head until an A 1c check one time. Oh yeah, where she basically, like, spider monkeyed up the corner of a wall in the room when the when the phlebotomist came in and, like, flipped out, and I had to take her out of the room and, like, calm her down and everything. And now she's got this crazy, and I mean crazy in the sense of the word crazy that you're thinking of, like, when she gets her blood drawn, she stares at the needle. Oh, wow, oh my god. And look away. She goes, I need to see it.

Dr. Tarlow 8:46
Okay. Whatever worked. Yeah,

Scott Benner 8:48
yeah. But so anyway, one time before she left for college a couple years ago, I said you are gonna have to give yourself an injection before you leave, because if it comes up at school, we can't be doing this thing that you just described, by the way, by the way, do you prefer Stephanie or Steph,

Dr. Tarlow 9:04
either way, Steph is what most people call me. Okay, so

Scott Benner 9:08
Steph, the thing you just described, Arden, took a syringe with insulin into the bathroom at our house, and she came back about 45 minutes later, and she's like, sweaty and disheveled, and she's like, I did it. And we were like, Uh oh, I didn't know it was this bad. You know what I mean? Yeah, oh yeah. You know what? Actually ended up breaking it for what she started using a GLP, ah, that's cool. She has to do an injection once a week, and she's getting better and better at it all the time. So which one,

Dr. Tarlow 9:42
I might ask, because some of them have, like, the auto inject, which is a pretty cool feature.

Scott Benner 9:46
So she is using Manjaro now. Okay, that one's like, cap off, unlock, push button. She had a little more trouble with ozempic. Mm. Because it's like, it's push, like, it's a collapse of, like, how does it work? It works like the Jibo kypo pen, like, you have to push it into, like, click on epi pen, vibe, right? And that one is interesting. Like, something between the button and the pushing was really it was just crazy how much she struggled with it, but it was helping her, and is helping her so much with her blood sugars that even she's like, geez, I gotta use this, you know. So, yeah,

Dr. Tarlow 10:28
it's pretty awesome.

Scott Benner 10:30
Do you have people using it in the practice? This episode is sponsored by Medtronic diabetes. Medtronic diabetes.com/juicebox and now we're going to hear from Medtronic champion Jalen.

Speaker 2 10:43
I was going straight into high school, so it was a summer. Heading into high school.

Scott Benner 10:46
Was that particularly difficult?

Speaker 2 10:48
Unimaginable. You know, I missed my entire summer, so I went to I was going to a brand new school. I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was. My hometown did not have an endocrinologist, so I was traveling over an hour to the nearest endocrinologist for children. So you know, outside of that, I didn't have any type of support in my hometown.

Scott Benner 11:16
Did you try to explain to people, or did you find it easier just to stay private.

Speaker 2 11:21
I honestly, I just held back. I didn't really like talking about it. It was just it felt like it was just a repeating record where I was saying things and people weren't understanding it, and I also was still in the process of learning it, so I just kept it to myself. Didn't really talk about it. Did

Scott Benner 11:36
you eventually find people in real life that you could confide in?

Speaker 2 11:39
I never really got the experience until after getting to college, and then once I graduated college, it's all I see. You know, you can easily search Medtronic champions. You see people that pop up and you're like, wow, look at all this content. And I think that's something that motivates me. Started embracing more. You know how I'm live with type one diabetes?

Scott Benner 12:01
Medtronic diabetes.com/juicebox to hear more stories from the Medtronic champion community. Dexcom g7 offers an easier way to manage diabetes without finger sticks. It is a simple CGM system that delivers real time glucose numbers to your smartphone your smart watch, and it effortlessly allows you to see your glucose levels and where they're headed. My daughter is wearing a Dexcom g7 right now, and I can't recommend it enough, whether you have commercial insurance, Medicare coverage or no CGM coverage at all, Dexcom can help you. Go to my link, dexcom.com/juicebox, and look for that button that says, Get a free benefits check that'll get you going with Dexcom when you're there, check out the Dexcom clarity app or the follow. Did you know that people can follow your Dexcom up to 10 people can follow you. Right now, I'm following my daughter, but my wife is also following her. Her roommates at school are following her, so I guess Arden is being followed right now by five people who are concerned for her health and welfare. And you can do the same thing, school nurses, your neighbor, people in your family, everyone can have access to that information if you want them to have it, or if you're an adult and you don't want anyone to know, you don't have to share with anybody. It's completely up to you, dexcom.com/juicebox, links in the show notes. Links at juicebox podcast.com, and when you use my link to learn about Dexcom, you're supporting the podcast.

Dr. Tarlow 13:34
I do. I use it off label. Actually, I don't know how I was able to get it covered, but for one of my type ones, I was able to get the GLP one in the form of the pill covered, and it just works wonders for their blood sugar. But a lot of times I struggle with insurance. We see a lot of patients on like the Oregon Health Plan, and that coverage is pretty hard to get.

Scott Benner 13:55
What I'm hearing from doctors is this very kind of medically sound like this person I'm dealing with has type one diabetes, but they also have insulin resistance. Oh, for sure. And if they didn't have type one, they very well might be type two. I you know, I don't know. And but what I'm seeing here is that a person without like insulin resistance, who has type one diabetes, is using significantly less insulin than this person is, and I think a GLP would help them. So they're doing a they're they're sending dual diagnoses into insurance. They're like, look, they're type one and they're type two. I don't care what you guys call it on the computer, that's what I'm doctoring over here. These two problems. Yeah. I

Dr. Tarlow 14:38
mean, that's great idea, yeah. Yeah. And

Scott Benner 14:41
they're starting, some people are starting to see it get covered that way. Okay,

Dr. Tarlow 14:45
yeah, that's great to know. Because, I mean, yeah, when I have patients who come in with a car ratio of one to two, you know, that's clearly insulin resistance. That's and that hurts too. It's not like that's and so for those patients who, if they're on a pot. Pump. They're changing their pump every day, and all very much off label use like a u2 100 insulin, if I have to. Yeah, but still, I think adding something like a GLP one would be awesome. And I know they're doing quite a bit of studies right now, like through T 1d, exchange and stuff to get, like, patients on GLP ones with type one. And hopefully we'll get some sort of approval for that too, to make it easier.

Scott Benner 15:24
Yeah, I think I'm supposed to help soon with the T 1d exchange to find people for that study. So I'm excited about it, because I've been doing a lot of interviews. Actually, I have one going up probably next week with this guy, 58 years old, type one, since he was 50, definitely type one, like auto antibodies, like, you know, the whole thing using insulin for ever. Probably had Lada for the first handful of years, but then his insulin needs went up for a couple of years. He started Manjaro, and literally, is not using insulin at all anymore.

Dr. Tarlow 15:56
Wow, that's pretty incredible. Insane.

Scott Benner 15:59
It's insane. I I've interviewed a 15 year old daughter, the mother of a 15 year old girl who's down to like, four units of basal, and that's it.

Dr. Tarlow 16:07
Yeah, I have actually a patient. She's probably like, 12 or 14, and she's on two units of long acting, and we tried to increase her to three, and it was too much. And that's just so interesting. And the and her carb ratios and correction are, like, pretty average for her age, but we just cannot go up on the long acting

Scott Benner 16:26
because of a GLP or just in general. Oh, just in general. But

Dr. Tarlow 16:30
I think that's so weird. People's different insulin requirements, but yeah, no, that makes sense with the GLP, one needing way less. And I try to get that too sometimes for patients with metformin, but it just doesn't have the same

Scott Benner 16:40
effect. Yeah, Metformin is nice, but it's not going to do this. What this stuff is doing? No,

Dr. Tarlow 16:45
it sometimes decreases long, acting a little bit, but nothing to the extent that the GLP ones do.

Scott Benner 16:51
So for a number of years, Arden Zendo, who manages her diabetes now, was her endo for her thyroid when she was still a juvenile. And she kept talking. She kept talking. So the way we did it was chop, oh, I've never said Arden's Hospital in here before. Oh, well, who cares? It's over now. Chop was managing Arden's diabetes. Listen, they're great, but I was managing ardent diabetes, but I noticed that their deafness, for for thyroid, wasn't what I wanted it to be. So we found a concierge doctor to handle art and thyroid B and she also handles my daughter, my wife's and my son's thyroid issues. Right? When Arden reached 18, and chop was like, Get out of here. They said, it nicer. But, you know, I went to this endo and I said, Look, I know you don't take new patients and you don't do diabetes, really. I was like, but would you, you know, would you manage Arden's type one for me, please? She's really nice. And she said, yeah, absolutely. And then she started, you know, she's like, you know, we've been talking for years about Arden taking Metformin, because Arden's insulin to car break show was one to four or one to four and a half, she was starting to have, like, really, like, bad acne that we couldn't get rid of, you know, and then stomach issues and stuff, and heavy periods, stuff that really looked like PCOS, like, that whole thing. And she's like, let's try the Metformin. And we kind of, I almost said dicked around, but you're like, a professional, so I didn't say it, but then I said it anyway, yeah, but we dicked around for a little while with it, because you're like, I don't know. I don't know. And then once she got her as a as an adult, she's like, Scott, let's give her a GLP and see what happens. That's awesome. And I was, I was like, Cool, all right, so holy crap. Stephanie, like Arden's insulin to carb ratio now is like one to 10. Wow. And and her insulin sensitivity went from 42 to like, 65 that's impressive. Yeah, her basal went from 1.2 during the day to point 8.85, and she's using Iaps. So there are times of day when these settings are even lower or sometimes more aggressive, like, you know what I mean. And more importantly, like, we never thought of her as having weight to lose, but she lost weight and she doesn't, and she looks healthy now. It's not like, we're like, oh god, she's looks thin, like, you know what I mean? Like, she she had, she had lost a little too much. We adjusted her GLP dose, and it's moving the other direction now. But her diabetes is incredibly, incredibly stable, and even if she, like, flat out, just doesn't bolus for a meal until the last second. We're seeing, like, 180s that come back, like, in an hour or so and level out.

Dr. Tarlow 19:33
Wow. Really something. I love that. Yeah, that is beautiful, fantastic. So

Scott Benner 19:37
anyway, I didn't mean to talk about all that I was I have you on here to say I'd like you to be part of the Grand Rounds series, and all I want to hear from you is what works for people with type one diabetes. What are some of the problems you see clinically, or anything really that you want to share that you think benefits doctors listening and patients who are listening? Mm. That's

Dr. Tarlow 20:00
a great question. Yeah, I think what works is trying to find especially so I've worked, I worked with adults for five years before and at Sutter Health in San Francisco, before moving back to Portland, where I'm from, and doing peds. And, you know, I think the biggest thing, especially in that young adult population and then the teen population is really finding a way to figure out what the barriers to care are and connecting with the patient to address those and make them real. Because I think you know, for every single person, diabetes looks so different for someone they might love having lower blood sugars and run themselves in the 60s because they do not want to hide they're terrified of highs. And then the opposite is a patient who's running themselves so high because they're terrified of lows. And so maybe they're not just missing their insulin because they forget. So really trying to, like, understand the reasoning behind I do feel like I have a little advantage, like, when I see a patient's Dexcom or pump report, I can kind of tell what's going on before I walk into the room. And I think a lot of times too in the in these peds kit population, like, you know, you're with parents, and the kid does not want to get in trouble for not doing what they're supposed to. So there's a lot of maybe lying, of yes, I'm taking my insulin, and it's like, you're not. And so I really love, especially on being able to, like, go through, I think, like looking at the pump reports together to show like, well, this day there was only one bolus, and this day you didn't enter your carbs one time. Like, are you not eating all day? And really, really trying to, like, okay, yeah, I guess I realized, like I wasn't doing that the whole time. And I think the biggest thing I try to enforce is like, they're never in trouble. I just have to know what they're doing to adjust in the best way for them if they tell me they're always taking their insulin and they're on shock so I can't tell, and then I end up adjusting their doses. Then they're going to go low all the time, and then they're going to be afraid to take their insulin, so they're not going to do it. So I really think coming to terms with like taking it patient by patient, I don't think there's a one size fits all for every patient, and really, like bonding with the patient and and their family, to develop that trust so that they're willing to tell you, like, what's actually going on in life and with diabetes is like, the most important thing that you could possibly do. I like to, like, let the families know that I have diabetes, so that I think, like the patient understanding that, like, you know, when I was a kid, I used to get in trouble at my endocrinologist with my parents for only checking, you know, two to three times a day. Like, that's a real thing, and it's okay, and you will be fine. But the more you check, or, like, you know, to convince them to wear a Dexcom so they don't even have to worry about that, I think that's all, like, really important for them to see that, like, it's okay to have these problems, and you will get over them and it will be okay. I was

Scott Benner 23:06
really interested, because when I started making this series with Jenny, I could tell, from her perspective, that the most important thing is communication. And she kept saying, like, if you know, if you're the physician, if you're the assistant, if you are you need to understand the person in front of you and their specific situation and not judge them just based on your idea of how this should go. I feel like that's what you're saying. I feel like you're saying, If I don't know these people, if I don't know what's happening or why it's happening, then how do I help them? How do they do better? Right? So, how do you accomplish that, though? Like, how do you get to know them and figure out, is it questions you ask, is it over time? Like,

Dr. Tarlow 23:49
how does that all work? I think it's a mix of both. Like, when I'm first meeting a patient, you know, I let them know. A lot of times I'll be like, Oh, do you wear a Dexcom, or are you wearing a pump? And they'll be like, you know, yes or no. And I'm like, Oh, I wear the Dexcom, and they're not on a pump yet, you know, I'll, I'll say, Yeah, I didn't want to pump for the longest time. But, you know, now, with this technology out there, it's so good. Would you be willing to just like, hear somebody out about it and really just try to, like, level with them that I had that very similar experience, and I'm and I'm on their side, like, I just want what's best for them, and I don't like to use, you know, scare tactics or anything like that. I also think letting the patient talk so, like, I like to find out, you know, what do you feel you're doing well with your diabetes, and what do you think you could do better? And why do you think you're having trouble with this? And like having those open ended conversations, rather than just saying you're a 1c, is too high, you're missing insulin. Adjust your dose, see you next month, or, you know, in three months. I don't think that works. I think making those conversations and I. And letting them know, like, diabetes is a moving target. So I think a 1c is really especially in our society, like associated with a grade, and if you get an A 1c that's high, then you're failing. And I think that's totally wrong. First of all, I prefer time and range anyways. But if you look at a Dexcom report, it's basically a game. We're trying to maximize your time and range, and the best way to do that is to take your insulin and and so like, letting them really see like and going through the report like, look what happens when you take your insulin before you eat, that spike is so much reduced, versus if you take your insulin 1530 minutes into the meal, look at how high you spike. Or if you didn't take your insulin at all and then didn't correct, look at that, you know, like really trying to show them how diabetes works. I think too, like these kids are smart, they're having to act as adults at, you know, whatever age they're diagnosed, they're getting this crazy diagnosis that I think for it's really impossible for anyone to manage on their own, but just letting them know, like, even if they're doing a little bit, they're still doing a great job, but just, you know, pushing them to do more, and really just being on their team, I think developing that trust is what's so huge.

Scott Benner 26:17
Did you have trouble as a kid?

Dr. Tarlow 26:21
I didn't really, I just had, like, a great I think community is, like, so important, and it always breaks my heart a little bit when kids are embarrassed of their diabetes, because no one actually cares. Like, and I think in the way you phrase it too, like people think it's really interesting and cool. And so I was really lucky when I was first diagnosed, a family friend made a diabetes team for me with neon pink shirts. And that was the very beginning of my JDRF walks, which I've done for 20 years with, like, neon shirts, neon green, neon blue. We get the whole school involved. Like it was a big fun yearly event everyone looked forward to. And I think having that community, you know, I was never embarrassed of my diabetes. My friends were amazing with my diabetes, looking out for me, like at basketball tournaments and things like that. And then my parents would nag me to test my blood, and I would always, you know, get in a little bit of trouble when I wouldn't check a lot at the appointment, but my ANCs, I'm a perfectionist, very type A in terms of my management, and, you know, that kind of like the way I was with school work, it kind of just transferred into how I was with my diabetes care. So in that regard, I'm really lucky, like, I also think at 12, there's like, an advantage of being diagnosed at that age, because it's still kind of fresh. So and you, you're a little bit older, so you kind of have a advantage of possibly missing that burnout. So I never really experienced the burnout. Okay, that was helpful, yeah,

Scott Benner 27:53
was your mom helpful with that? Like, wrapping that amazing the community around you kind of feeling,

Dr. Tarlow 27:59
yeah, my parents are my biggest supports and and my sister and my grandparents, like, they just, you know, really connected me and to who I needed to be with, like my sister. She knew someone at the high school who was, like, this football player and like, you know, he's had diabetes for how many, however many years, and he did shock and he came, she had him connect with me and, like, come to my house when I was first diagnosed, and just talk with me. And I remember, like, you know, he was a senior in high school, and I remember calling him, and he was at the beach with his friends to tell him, I get my first injection. And he was like, so proud of me to not meant the world. Yeah, what

Scott Benner 28:41
do you do, though, if somebody comes in the office, they don't have that around them. They like, what if they live somewhere where people are not as kind and, you know, they don't have a mom or a dad who are going to help them, like, open it up, like, you know, they they can still benefit from just having a, I think, just a few friends who are, like, tight and on their side. But, you know, you know what I mean? Like, it's easy to say, like, go out there, but like, I'm not, I'm obviously, I'm not coming down on you, but obviously the place you went out into was like, oh my god, Stephanie's here. Like, what happens if you go out and people are like, we don't care. Leave us alone. You know what I mean?

Dr. Tarlow 29:15
Yeah, I think in, you know, I didn't notice it as much an adult, but when I I was really fortunate growing up. I had a great childhood, and I didn't realize until coming back to work in peds, how not every family is able to give that to their kids. And it was, you know, it's sometimes really hard to see and it's really challenging to work with. At OHSU, we have an incredible program called niche that works with interventionists that are able to actually like, go to patients houses and interact with them. They'll like, pick them up and take them to the gym. They'll text them. So we really try to get the patients who are struggling or have frequent DKA episodes connected with a niche interventionist. I think that's one of the most amazing things about OHSU. And, you know, not. Everyone has that then. So I really try to give resources of, you know, social media is big. I really like beyond type one. I think that's a great connection for people. It's like a social media for people with diabetes. And so I try to connect them with that. And then, you know, I also just talk to my patients, like, what's embarrassing you about your diabetes? Like, what's the worst thing that's gonna happen if someone sees you take a shot, or someone sees a pump on your body? Yeah, so just trying to reason with them. But you know, I do think there's some huge disadvantage that we haven't figured out, a breakthrough where, you know, if niche isn't covered for the patient and their families, like, and I have a 11 year old whose parents aren't involved like, you know, I haven't figured out a perfect way to deal with that family. It's really hard, and sometimes it keeps me up at night because it's just so unfair for an 11 year old to have to figure out diabetes. And so I think again, that goes with, you know, really encouraging and emphasizing to them that, like, every little thing you're doing for yourself is incredible. I say if you're gonna miss a shot, just don't miss your long acting, you know, let that take that always, to keep you out of the hospital, and just doing really many goals with them to get them to where they need to be. Because at 11 year old, 11 years old, if you're managing by yourself, there is no way you are going to be in Target. I just like, That's so unfair and a very unrealistic expectation. Yeah,

Scott Benner 31:26
okay. I mean, especially when what you just said there about, like, explaining to people, like, hey, look, doesn't matter if somebody sees you. Like, that's parenting, that's not medical care. You know what? I mean, like, you're just being a, you know, a big brother, a big sister in that situation, that that's something you would expect or hope that they're getting at home, and if they're not, and now on top of that, the diabetes comes. I hate to say it like this, but can you identify the people who are going to struggle? Is it not hard to figure out who's who?

Dr. Tarlow 31:53
It's not okay. It's really sad. But I feel like sometimes you're you're pleasantly surprised, but I think you know, in certain situations, you can tell who's going to struggle and have a hard time, because this kid has no idea how to count carbs, and as many times as you bring them in for education, like they're 11 years old. And what, you know, what does that look like? So, and it's hard. Like, you know, we like go to school to learn how to interpret these graphs and make and make adjustments. Like, even for families that are the most supportive, like, a lot of families are afraid to adjust settings on their own, I love and encourage them to always do so. But like, for a kid again, managing on their own, they're not going to do that. So we're making adjustments every four months. If they're able to even get to their visits consistently.

Scott Benner 32:44
Do this with me for a second. That idea of like, you just adjusting it every four months is that it's just a shot in the dark, right? Oh yeah, yeah. You're just like, you're just like, the A, 1c, went up the time and range got worse. I'm gonna put in more that. That's pretty much it,

Dr. Tarlow 33:03
yeah. Like, I mean, I'm looking to see where I need to adjust, but yeah, like, I encourage my patients to always reach out to me through my chart, our little online portal, like, much more frequently if they're noticing trends, because every four months, that's that's not enough. And being realistic, but also we don't have the availability to see patients more frequent than that in most cases, when

Scott Benner 33:27
you use a DIY algorithm and you see the difference in basal and insulin sensitivity and bolusing data. I mean, God, sometimes like hours to hours, but day to day. It really does make, or makes me feel, like, what is the point of like this? These, like quarterly adjustments. Like this is ridiculous. Like, if this is what happens to a person who has like a five, five to a six, A, 1c, then no wonder they have, I mean, because we're talking about people with eights and nines and 10s, right? Yeah, yeah, yeah, greater than 14, Oh, yeah. And so no wonder these other people are having this like, because if the variability is hour to hour, day to day, and we're adjusting every 120 days, then this is just meaningless. Like it almost meaningless, like it does fall to them understanding. And then if you get to the point where you you say, like, as your example, goes, like, they can't count carbs, then that's where you have to start talking to them about, all right, listen, you probably eat the same things all the time. Like, you know, every time you count this, you seem to be off. So forget counting it. Like, look, look what happened here. You know what I mean. Like, you use this much insulin, and it looks like two more units would have been appropriate. So next time you eat this, like, let's just make it five and like, see what that like, you have to start giving them that kind of autonomy. But then that gets outside of any real medical like, advice that you would be comfortable giving, right? Like, that's not a thing you could say to somebody.

Dr. Tarlow 34:57
Oh, yeah. 100% and it's so in. Like, you know, you have patients who could care less about their diabetes, and patients who care so much, and each one of them has their own frustrations with it. So like, I just saw a 12 year old on Monday who she's doing excellent on the pump, but her a 1c went up from like six, nine to seven, five, and she asked to go back to injections. And I was like, whoa, whoa, let's see what's going on here. And you know her pump, she's on OmniPod five, so she was getting kicked out of her pump because high blood, you know her, yeah, high blood. And because her, she was getting like 15 more units in basal in auto mode than manual mode. I'm like, we just need to make these adjustments. You are not doing anything wrong. Like, let's, let's talk about why the pump is better. And one thing I really try to stress with patients who don't want the pump yet is, like, when you give shots, you do four times a day and you're feeling good. Like, I just gave four shots a day. I'm doing a great job. But if you think about it, on your pump, it's making adjustments to your blood sugars every five minutes. You cannot beat that. You can eat pizza at bedtime and wake up with a normal blood sugar. Like, you don't have to wake up at 2am and expect to give a correction. Like, that is amazing technology. Stephanie

Scott Benner 36:16
sweat, sweating your ass off, like, Oh my God. What's wrong? Like, feeling nauseous, like all that. Like, what's interesting here to me is that, like, the A, 1c, goes up the tiniest little bit, and then the person is, like, I want out. Like this, this bad number, bad got it better last time. Like that. It's like, that simple, right? Yeah. And then yeah. And then the next thing I want to ask you about is that idea of, like, some people don't care about their diabetes. So like, do you think they don't care, or do you think that they're lost and don't know what to do? Or are there some of both?

Dr. Tarlow 36:49
That's a good question too. I have some patients that I've seen for, what, three to four years now, I guess I've, I've been back and they, we have the same visit every single time they're on the dash. So they're not in auto mode, which, you know, okay, but they're not putting in any boluses. And then they're like, you know, if I have OmniPod five, it's gonna make a difference. So we switch them to OmniPod five. There's still no boluses. You know, OmniPod five, I love it. I wear it. It does not work. If you don't bolus, it's just not going to work. So, you know, there's certain patients that don't want to that just don't want to interact with their diabetes. And I, I don't think it's that they don't care, because I think deep down, they really do, like, it's easier to put up that front than to, like, admit that they're struggling from, you know, a diabetes related depression, a severe burnout. But, you know, we have psychologists that can meet with the patients, but I don't know. I think burnout is one of the hardest things to deal with.

Scott Benner 37:55
Dig into it with me. Stephanie for a second. Like, just pick one of them in your head. We don't want any identifying conversations, right? But like somebody who you think just doesn't bolus for their meals, do they understand the long term implications of what they're doing?

Dr. Tarlow 38:11
I don't know. Does any teenager, necessarily, I think would. I don't know. I think in a in a lot of settings, people do understand the long term effects even teenagers. But I think what's really hard is when you feel fine at 200 I think the body's like a thermostat. If you're constantly running 60, you're not going to feel low. If you're constantly running 240 you're not going to notice these symptoms of running high. And it's really hard to see that in the long run, you are going to have these issues. And I have, I had so many adult patients that I would see, they would be like, God, and now their a one, Cs are like, six, five, but they've had, you know, one amputation, and they're like, if only I just would have been like, okay, it takes two minutes to bolus. Then I would have just done it. Because now they run their blood sugars perfect, because they get it, because they had to experience some sort of, you know, severe complication.

Scott Benner 39:07
The question is, how to get them there without them being smacked in the face with something,

Dr. Tarlow 39:11
right? And I just, I don't know, I really don't like to use scare tactics. I have before, I think in a certain patient, I have had to do it because nothing else seems to get through to them. I don't know. I haven't seen what, what's happened yet, but it's the time. Yeah, I think, yeah. I'm hoping it worked. Because, you know, there's a point where, like, also, you know, a lot of our kids, they don't have, like, micro albuminuria yet and things, and I think once that becomes positive too, that sometimes not always, gets parents a little more on board to then, you know, prod at the kid to take their insulin. But I think there's a fine balance, too, between parents and. Kids trying to maintain their relationship and not have it hurt so much from a constant nagging of take care of your diabetes. Digi bolus like that also plays a huge impact on families, and that's really hard.

Scott Benner 40:12
Basically, we're talking about smoking. This is, this is right, this, yeah, is smoking. It's, I feel good when I'm doing. It doesn't seem to be a problem. You're telling me that 40 years now, I'm gonna have lung cancer. That doesn't sound like something's really gonna happen to me. If you degrade, you degrade slowly, you don't feel the degradation happen. And then once it's too late, it's too late,

Unknown Speaker 40:39
right? Yeah, it's smoking. Yeah,

Scott Benner 40:41
it's smoking. And so, yeah, so like, if you I guess we, and how did we fix that in the in the population? Because, hold on a second, ready. Hold on a second. Let me go over here to this screen. How many Americans smoke today versus 20 years ago.

Speaker 1 41:03
Hold on, sorry. Oh, you're fine. Yeah.

Scott Benner 41:07
I'm just asking our our computer overlords, for some details here, American adults has significantly declined over the past 20 years. In 2021 11.1% of US adults smoke cigarettes. This represents a notable decrease from approximate 20.9% in 2004 How about that? So okay, so hold on. How did we accomplish this? Public awareness campaigns, increased taxes, smoking bans in public regulations on tobacco, advertising, health warnings on the package, smoking cessation programs, cultural, social shifts,

Dr. Tarlow 41:46
yeah, yeah. And I feel like a lot of those you know, media things were scare tactics. And it's not like, you know, that'd be like, putting on the pump, use or lose land, yeah, no, right, right,

Scott Benner 41:59
yeah. What's this say on my insulin here? Yeah, you're right, so, but is it? Is it highlighting that these people aren't they're not bad people, they're not dumb people. They don't want bad outcomes for themselves. This is just how a human brain works around stuff like this,

Dr. Tarlow 42:20
in a way, yeah, I think, like, out of sight, out of mind, you know, if you're out with your friends and you have to, you have to bolus. Why bolus? Then you're different and you feel fine. So why would I stop skateboarding right now to take insulin for this Slurpee? You know? Yeah, I don't know. I think the biggest thing I always try to emphasize is, like, you don't even know how much better you're gonna feel if you just take your insulin. Like, you're gonna be less tired, you're gonna be way less thirsty, you're gonna focus better. Like, I just really try to frame the positives also, I think too, like, you know, for the patients that aren't gonna do it. We have an option now. We have the island, and that pump is great for patients. Well, you know you have, I think we're learning more and more about it, whereas, like you have to consistently announce meals or consistently not announce meals for it to work the best, but I do think there is, like, a huge advantage to it, like in a completely different direction of the use of this pump. Like I have a family who is not from this country. They do not speak any language that would be on an insulin pump. They eat very different foods, so counting carbs is out of the question. And so we use fixed dosing for shocks right now, and that has resulted in a whole gamut of issues, from hypoglycemic seizure to running really, really high, although they never go into DK, because the parents are amazing, and they always get their insulin, but the amount of insulin really hard to figure out what they're doing at home. And so we're working toward getting them an eyelet because, you know, they will consistently be able to bolus, and the girls are getting old enough that they'll be able to use their pump to do so, yeah, and I think you know that is pretty much going to this technology that is out there is going to change diabetes, especially in this population that doesn't want to think about it, because it does the thinking for them. Like, even if I can get a patient on a tandem pump, if you're not going to bolus on a tandem I would say I could still probably get your a 1c to an eight instead of greater than 14, you know. Like, that's a huge difference in terms of risk reduction.

Scott Benner 44:43
It's good of you to use the numbers, because I think people listening might when they hear high a one say they think, like eight, you know what? I think it's a win. Yeah, for a lot of the people you're dealing with it, it absolutely is right. So I think what I've done here is, I think I built. A community of people who are actively engaged in their health. And so when we stop to talk about some of these other devices, sometimes I think most of them listen and go eyelet, like, what I'm not. I don't want that, you know, I mean, like, and of course, you don't. If your a one sees five and a half and your time and range is crazy and you know, like 90% Yeah, you probably don't want the island, not in its current form. Maybe you would in the future. I don't know what they're gonna do to it, you know, right? But for right now, I keep saying out loud, because I want people to listen. You don't realize that most people with type one diabetes are running around with crazy high a one CS and not, oh yeah, not giving themselves insulin. And you know, and that these devices will help them significantly. You could take a person with a 14, a 1c and give them a seven, oh, my God, right, even if you gave them a nine, what a great thing. And that's why talking to people like you is so interesting, because you actually talk to everybody. Yeah, you see all gamuts of people, right? Like, they're, I'm sure you help people who roll in there every time, they're like, Hey, what's up? Crack their knuckles. They're like, what is it? A five six or a five seven. And then, you know, like, you Josh around a little bit and write their scripts and go, Oh my God, you the best part of my day. And then, like, that kind of thing. Greatly, is that about what happens? Yeah, that

Dr. Tarlow 46:23
was actually my Monday. Okay,

Scott Benner 46:24
and so those people don't need help because, for whatever reason, their brain works with what's happening to them, and they're doing the things they need to do when they need to do it. But what about everybody else? And we don't talk about it because it's uncomfortable, but it's happening to most people,

Dr. Tarlow 46:44
absolutely, yeah, and then you think about it too, and there's people that go above and beyond with their care, and they're still not seeing results. And it's like, well, you know, that's okay, your child is four, they half the time their whole meal. They half the time. Don't half the time they're running around like a crazy person, and the other time they're, you know, yeah, it is so hard. Diabetes is so hard. And I think that's what everyone needs to realize, is everyone is doing the best. Well, most people are doing the best that they can. And I really think if you put any effort toward it, you should be really proud of yourself, because it is so frustrating. You can do the same thing every day and get completely different results, like that is hard, and so

Scott Benner 47:27
I think it's, it's you can say that they're doing the best they can, even if they're not, like, even if you realize, like, look, there's a world where they could do a more, right, but they're not. There's something stopping them, like, what's happening in your mind and your body and your life is not just what you talk about in your endocrinologist office. So like, How come you don't just bullish your meals? Well, you know, I know I should blah, blah, blah, but then you don't know what happens if they get home and there's a drunk parent or a high parent and they're busy, like, just trying to stay out of the way and not get hit or not get yelled at or not get you know, there's a lot of things happening to people that you yeah and so like, they could actually be living a life where dying from a diabetes complication in 30 years is not even in their top 10 problems. So they are, yeah, they are doing the best they can. And yeah, are they doing the best that's available? No, that's not your job, right? Like, how are you going to handle that bigger problem for them? Like, I think sometimes the sadness of it is, is that people who have the bandwidth to take care of themselves sometimes get diabetes, and people who don't have the bandwidth to take care of themselves also get diabetes.

Dr. Tarlow 48:38
For sure, it doesn't discriminate, and it requires as how we know it today, aside from the islet, it requires you to be literate in math, and unfortunately, a lot of our pumps do not have other languages. So I hope you speak and read English like it's really hard, especially for families that are not you know, from, you know, the the typical places that are manufacturing these devices. Yeah, it is interesting. I mean, it's a, it's a disease that affects the whole world. So I don't know how to fix that issue, but I wish that something could be done about that.

Scott Benner 49:15
I was so proud of myself for a piece of time when I put together the Pro Tip series, and then when we, like, made the bold beginnings for people who were newly diagnosed. And I can see, like, Steph, I have 50,000 active members in a private Facebook group. Like, so that's amazing. That group does. I haven't looked in a while, but the last time I looked, it does 125 new posts a day, 8000 likes comments and like hearts like combined, and it adds 150 new people every three days. So Wow. It's fascinating to watch people who either get it or are actively trying to get it, talk to each other, because the community part is, I think the most important part of it. A number of different reasons. And then I end up being in this situation where I look and I go, wow, 50,000 that's insane. Like, really, really amazing. I think I probably run the most active, valuable diabetes group on the planet. I mean, that's incredible. That's definitely, it's only 50,000 people.

Dr. Tarlow 50:21
You know it's you're getting to the people that have internet and know how to use Facebook or

Scott Benner 50:25
have time, yeah, the they have the intellect the time their husband's not chasing them with a knife, like, like, or whatever it is, right? Like, the people who are actually able to go, hey, you know what? It's two o'clock in the afternoon. I've got a couple of minutes. Let me listen to this episode about extending my bolus, like, that's not everybody, not everybody's life. And when I realized that I've just spent so much time in my own head trying to figure out, like, how do you put this together for the other people that this isn't the and I don't know the answer either, I rack my brain's trying to come up with

Dr. Tarlow 51:01
the answer, yeah. I mean, I think one thing that's just like, again, something that is brings is an ease of use of like, interact with the pump as least as you possibly can. But it allows people, I think you can't discriminate, people who might not be technologically savvy, to use diabetes technology like it needs to be offered to all patients. I think that's so important, because it's like a cheat code having a Dexcom and having a pump these days, you know, it's really unfair to not offer it to everybody. And I think that's one thing that's super important is like, you know, making that accessible. So

Scott Benner 51:40
I've been having more episodes about I let and I do it. It's kind of at my detriment, because I know that the core audience for this podcast is like, I don't want a seven, A, 1c, and I'll count my cards. Yeah, I just think it needs to get out there more, and I have the biggest platform, so I'm trying to be more aggressive about it, because of all of the other people, and these are the people you can't market to. You can't sell to them. You can't sell to their doctors, because their doctors are looking at them like, here's another one coming in who's just going to ruin their life, and nothing I can do about it, like that bad attitude exists in their life as well. Every time I've interviewed someone from from beta bionics, I've implored them to go to GPS and talk to them, because I don't even think, I don't even think most of these people are going to endocrinologists,

Dr. Tarlow 52:28
yeah, yeah, yeah. I mean, that's totally true too.

Scott Benner 52:30
Yeah, yeah. I'd like to see them educate GPS about, look, just slap this thing on people and see if they can't get things together a little bit, you know,

Dr. Tarlow 52:39
yeah. And, and, you know, I keep talking about the eyelet, like, I think tandem is an amazing pump. And I really also love OmniPod. It is true, though, there's some cool even if you have an ANC of 6.5 or whatever you have, there is some awesome part of islet that always draws me to it. That's like, I could go on a vacation to Italy, any a whole bowl of pasta and five pizzas and whatever I want, and not have to think about how many carbs that is and how to bolus for that, like, that's pretty awesome. That burden reduction is, is something I think that really you know maybe you're going to get a slightly different, a little bit higher, A, 1c but in the again, going back to risk reduction, like, what's the difference between a six, eight and a seven, one? I don't actually know if it's going to be that significant. So if it improves quality of life that much for someone who is instead, you know, counting one and a half, putting in one and a half carbs, like, for a small like, two almonds or something. You know, I think, what about giving yourself that freedom back?

Scott Benner 53:46
Yeah, no, it's awesome. I actually to go a little farther. I think OmniPod was trying to split the difference with OmniPod five. I think they were trying to be like, Look, this is more aggressive, but it also really doesn't want your involvement all that much. You just have to put in the meals. You know what I mean? Because it's not set up for you to understand how it's working like so it's not, it's not a tinker like device. You know what I mean for sure. Yeah. And so

Dr. Tarlow 54:14
part of it kind of drives me crazy

Scott Benner 54:17
conservative, yeah. And and listen, I don't work there, and I don't know anything. And I want to be clear about that, because people think I know stuff, I would imagine that they're working on that behind the scenes to make it a little more aggressive, like they hear the feedback, right? That's the feedback, yeah. So I like the idea of because they know the thing that we don't talk about, which is a lot of people aren't putting in the effort that's necessary all the time, and what if we could cover that effort with a mechanical device? And I think that's a really noble goal, sincerely,

Dr. Tarlow 54:52
yeah, and I guess going back to some of my patients that don't bull us, and you know, they have five episodes of DKA. When I do tell them about the eyelet, I see them smile about their diabetes for the first time, knowing that that's out there. So when you were asking, like, how do you get through to those patients? I think showing them there is a light at the end of the tunnel, you know, like letting them know you do this, you do this well for two months, so we somewhat know what your insulin requirements are, and then by that time, you'll be ready for your pump training, because we book a little bit far out for pump trainings, right?

Scott Benner 55:29
Training is going to be, what is it? Normal meal, small meal, large meal, something like that, breakfast, lunch, pretty

Speaker 1 55:34
much, basically, yeah, it just, I think those first like four days you have to, they really want you eating like regular meals, so the pump learns what a regular meal is. Yes, to get it like set up. I

Scott Benner 55:46
just did an interview with them that went up the other day. You'd probably really like, I'll have to, I'll

Unknown Speaker 55:51
definitely check that out. Yeah, I

Scott Benner 55:53
and because they're also looking at dual hormone now. So it's episode 1217, by the way, this dual hormone pump, which in my estimation, allows them to even probably try to be more aggressive with the algorithm, if they can catch it on the back end with a glucagon. And so I can't wait to see where that goes to, like, that's all very interesting. I also think AI is going to be really valuable for people with diabetes in the next five years, too.

Unknown Speaker 56:19
Oh yeah,

Scott Benner 56:20
yeah. But again, those are tools. That's a tool that you need to be, like, interested in using. You know what? I mean, like, it's not, it's not a thing that it's just everybody's gonna do it, but maybe one day, like, maybe one day it will get to that point. I find these conversations like intellectually inspiring and emotionally draining, because there's, at the moment, not a real answer for how do I go find a person who can't find a way to bolus for their meals and help them? You know, I keep thinking I'm going to talk to somebody who one day is going to be like, Oh, Scott, I know. And I'm waiting for that to happen, I guess. But, um, you don't have the magic bullet answer either, huh?

Unknown Speaker 57:07
Unfortunately, I do not.

Scott Benner 57:08
And how hard is that on you? You come off like, like, a really lovely person. So at what point are you not going to be able to drag your ass out of bed every day to hear somebody go, No, I don't bolus for my meals. Like, when is it? When are you gonna burn out on helping them? You know what? I mean? I don't

Speaker 1 57:27
know. I don't think I can. Because, like, you know, sure, even working in endocrinology, like, I still have nights where I'm up at 2am feeling terrible and eating four packs of fruit snacks, or my blood sugar is stuck at 300 and so I have to be there to advocate for them and to just let them know it's okay. Like I just feel like getting diabetes sucks, but it gave me a real purpose. And so I don't know I feel like I, I I really hate diabetes, but I love it. You know, does that make sense? No,

Scott Benner 58:08
no, no, I it does. I just, I worry about, like, psychological pressure that comes back to you, like, at what point do you become, like, the cop who just expects that everybody's breaking a law? You know what I mean? Because it'll happen eventually. And, yeah, and it sucks, because for you listen to all the motivation you have, it probably maybe it's never going to happen to you, or maybe it'll take forever to happen to you. But for the people who are just like, Look, I just wanted to be a doctor. Get it. I mean, like, sometimes I ask people, why do you help people diabetes? And, like, I don't know. It made sense to me, and I was like, okay, so they're not there for some bigger reason. And then how many visits do they have to how many doors do they have to open up? And then here my a 1c, is 14, and I don't know, man, I don't know how to I don't want abolish this. I don't want to have diabetes like that, like, until they just go, I don't care. You know what I mean? Like, like, when does it kill them inside? A little bit,

Speaker 1 59:02
I guess I would say one thing that really helps is having an amazing team. And I love our team, like they keep me going to, like, there are definitely days I'm frustrated where I'm like, Oh my gosh, not again. Like we had the same talk last time. And, you know, I think our team just keeps me going as well. Like, yeah, you know, the obviously, the patients, but then having my team to talk through things with, and like, you know, give new ideas of what we're going to try for next time. And even just, like a referral to just go over diabetes basics again with the educator, I think is huge, and so that's important as well. Yeah, I

Scott Benner 59:45
don't know how you don't just, like, blurt out, oh my God, just take care of yourself. I know it's hard to, like, make a person see the future, especially a younger person. I get that right, like, I understand the whole like, I. Something has to happen. Like, listen, Stephan, I've interviewed so many adults who will tell the story of it's just it feels like it's such a personal story to them. But I'm like, Oh my God, I've heard this 1000 times. Yeah, you know, I got diagnosed, and my parents took care of it for a while, and I was doing great, but then I went off to college, and I didn't really pay attention to it, but I don't know, I got through somehow, and they're like, oh, what your ANC is? Like, really high, you know? And then I got out, and I thought, Oh, I'll take care of it as an adult. But I didn't. And then always, the same thing happens to the people who get saved before complications. They meet a person that they want to be healthy for Stephanie, I'm telling you all the time, I met a guy, I met a girl. I had a baby. I wanted to have a baby. Those are the things that snap people back the fastest. Helping themselves is not nearly as easy as helping themselves. For someone else,

Speaker 1 1:00:57
you can only get all like little singles night,

Scott Benner 1:01:01
I like, where your brain jumped. You're like, we just got to get all these people hooked up, and then their diabetes

Speaker 1 1:01:07
will be better diabetes. Singles night for 18 and older. Stephanie,

Scott Benner 1:01:12
that was such a 30 year old thing to say. That was fantastic. Thank you. I was thinking, how do we find something in their life that they care about enough that they need to be healthy for it, or does it have to be a person? Because I listen, generally speaking, I'm an upbeat, hopeful person, but if I was living in a terrible situation, or if I was flat broke, or I didn't have any prospects in my life, I don't know why I'd care that much about my health. Like, what am I getting healthy? Right? You know what I mean, to go live, to go live in an alley, like, you know, I'm saying, like, like, and so, like, there's got to be a thing. Like, I just think it's a very human thing to need a goal.

Speaker 1 1:01:53
Yeah, I mean goal, my patients who are goal oriented athletes, or I have one that wants to be a pilot and have to, like, prove incredible blood sugars. These patients do so well or or, like, in my adult care, the ones that lost their license because maybe they had a car accident with a low blood sugar, you know, those ones trying to prove to the DMV they have good blood sugar, those are incredible blood sugars. So

Scott Benner 1:02:18
I'm right. Then a goal motivates people, yeah, yeah,

Speaker 1 1:02:22
okay, take some take something away or or put it at risk. And I think you see a benefit, but also the pressure of that is crazy,

Scott Benner 1:02:30
definitely. Let me say something crazy to you for a second. Okay, what if you launched a little test thing? Okay? And I'm going to tell you how much it's going to cost, the it's going to cost the $10,000 to run this test. And we're going to take 10 of your people who are like, I don't bolus, I don't do this. Blah, blah, blah, and you tell them that at the end of six months, if they can maintain this range and bolus for their meals, etc. They get $1,000 at the end of six months. You do it with 10 people and see if the goal motivates them to help themselves.

Unknown Speaker 1:03:11
That is an awesome it's not

Scott Benner 1:03:13
a bad idea. I

Unknown Speaker 1:03:14
love that because

Scott Benner 1:03:16
so now we just need to find a donor, 10 grand, somebody call Stephanie. That's all I want, like, because I want to see what happens. Do 10 of those people go, Oh, for $1,000 I can do it. I'll tell you something. This idea comes from a different a couple of different places. It comes from three different ideas that I've lived through. I'm 52 Stephanie. I'm pretty much almost dead, so I've been around a really long time. Okay? 52 the new 30. Yeah, good. Tell my knee. My father three packs a day. When he was managing his smoking, it was two packs a day. In the 80s, his boss, who really liked him, grabbed him and pulled aside and said to him, Ben, don't smoke for a month. I'll give you $1,000 and my dad did not smoke for a month. Now, he did eventually die. He did eventually die of heart failure, but so so I don't know if we needed 1000 every month to keep it moving, but he did it my dad, who would break out into a sweat if he didn't have a cigarette every couple of minutes, stopped for a month for money. Okay. Now my next thought here is an episode I did with a mom whose kid wanted a chainsaw, and I told her to pay him for every time he pre bolus up until the value of the chain saw. Did

Unknown Speaker 1:04:33
it work? Okay?

Scott Benner 1:04:36
I've heard that it worked. My third thing is that I worked in a corporate setting when I was really young, and I would frequently get pulled in to Human Resources meetings because I was seen as a common sense person, even at my young age. And they would ask me over and over again, how do we motivate people? How do we motivate people? And I would sit in those meetings and say, I don't care what anybody else says. It's. Nice to say that, oh, we need education. We need to be able to, like, motivate people. We can do monitoring. Technology will help. We want to support them. I'm like money. People care about money. Give them money. And when they finally went to a bonus system, they got the work out of people they wanted.

Speaker 1 1:05:18
I'm telling you, yeah. I mean, I think it's brilliant. I do think $1,000 is very awesome. I think if it was more like $25 I don't know if we'd see the same effect.

Scott Benner 1:05:29
No, no, you need a number that makes people go, oh, hold up. How much? Yeah, yeah, right, yeah. I'm gonna win $1,000 if I can just pre bolus my meals. Okay? Like, because that's really like Stephanie, between you and I, that's the deal. Good settings, yeah. Pre bullish, your meals. Don't stare at a high. Pretty much done, right? 100% Yeah, it's an A, 1c, in the sixes, Yep, yeah,

Unknown Speaker 1:05:55
okay.

Scott Benner 1:05:56
That's what I think. Like, I think you do that and then you say to them, Look, now you feel better. Now you know how to do it. Now we've made a habit. Now do it for yourself, right? Take your $1,000 and go do something awesome with it, and pre balls tomorrow, because you want to feel this good and be this healthy, because they have brain fog they don't even know about. You know what I mean? Like, maybe you can get them clear. And then, am I making that up? Like, like, high blood sugars? Yeah, I think

Speaker 1 1:06:28
it'd be awesome. I'd also be really curious what happens post winning $1,000

Scott Benner 1:06:33
Oh, I would be too, some people are gonna drop off, but you'll save a few of them.

Speaker 1 1:06:36
Yeah, no, I think it's great. And I think too, just like, you know, it's like brushing your teeth. You don't want to do it. You want to just go to bed and just like, you know, be ready for the day. But once you do it, it's a habit. And I think that's kind of how taking your insulin is too. Once they just do it and see, okay, that took an extra 30 seconds. Yeah, it's really not, I mean, yeah, it's, again, diabetes is hard, and it's not fun to have to be different, but it you know, it's not that much more time. It's not like you're taking 30 minutes out of your day before you eat, like it's an extra 1015, minutes. It's

Scott Benner 1:07:11
not that bad. Plus, if you were to write a research paper afterwards and present it to an insurance company and say, Look, how'd you like to save untold millions of dollars by paying everybody $1,000 a year to manage their diabetes

Unknown Speaker 1:07:26
better. Yeah.

Scott Benner 1:07:27
I mean, be brilliant workplaces. Do it right. They'll, they'll do exercise initiatives like they'll, they'll slap a like a little watch on you and give you a portal to report your your steps or whatever. And at the end of the year, they, if you've done it, they give you $500 and people who don't need $500 do it like, like, you know, you people who are like, people who have been in another step of life. If you said, I'm like, Look, I'll give you a $500 to paint my room, they'd be like, Get the out of here. I don't need your money paint your own damn room. But suddenly, when it's a game, it's a game and it has a prize. Boom, yep. Stephanie, when I was in fifth grade, my teacher did this thing in the last two months of the year where they we set up a city in our room, so everybody had to think up a business, and then we made money like and like, and everybody got money, and they were paid. And then on Fridays, all the businesses set up like a flea market, almost, and you tried to see who could make the most money, like it was just, you know, like a capitalism, you know, class almost, in fifth grade. You know, who won. It was me, you know, how I did it. I had a feeling. Did it with a roulette I did it with a roulette wheel. So I came in, I came in with a roulette wheel, and my teacher goes, Uh, you cannot do gambling as your business. And I was like, oh, okay, so what I was gonna do was I was gonna sell squares on the roulette wheel for a $1 whatever our dollar was, and whichever one it landed on the winner got half the pot. That was my plan. And the teacher goes, you cannot, you can't do that. And so I went home and I was like, damn, because I made my dad build me a roulette wheel out of like, wood. That's awesome. I went home and Pac Man was huge back then, so I made my dad buy me these little five inch paper plates and a can of yellow paint, and I laid them out, painted them yellow, cut a piece of pie out of them so they look like Pac Mans. And you put $1 down on a square, and the winner got a Pac Man.

Unknown Speaker 1:09:38
And I was allowed to do that. By

Scott Benner 1:09:40
the time the eight weeks was over, I had everyone's money. Stephanie, okay, that is awesome, yes. And I'm telling you, what it taught me about people is can be valuable in helping people with their diabetes. And I'm going to tell you right now, if I get afforded I would have already done this. I would have already started. A community thing where you can go into a portal and just track your a one, CS and your variability and stuff like that, and found ways to incentivize people to work harder for their stuff, like I would have, I would have already tried it, but I got the funding, so I'm putting it on you.

Speaker 1 1:10:15
Okay, someone reach out to me and give me the funding. Okay?

Scott Benner 1:10:18
That's all because you don't need money. You just, you just need the prize, not like the the job needs money, right? And then you any prize. How

Unknown Speaker 1:10:25
about a timeshare in Hawaii?

Scott Benner 1:10:28
Stephanie's like, I could probably get my eight 1c down for a vacation.

Speaker 1 1:10:33
Can I participate? I'm gonna stop bullets for a little bit

Scott Benner 1:10:37
every six months. This woman named Steph wins.

Speaker 1 1:10:42
One time, I'll be Steph, one time, I'll be Stephanie. You'll

Scott Benner 1:10:47
be able to trick them. That'll be lovely. Okay, I want everybody to think about this and do this. So here's what I would do. I'd give them the Pro Tip series in the podcast or the bowl beginning series. I would tell them, like, look, listen to this. Put these things into practice. Ask me questions, if you have any questions, and at the end of it, if we can, I don't know, in the first three months, if you can lower your A, 1c, and improve your variability to this level, then you win 500 and then if you can just do it for three more months, and you know, and then get to the goal that we set together, you Get another 500 and that's it. I mean, honestly, the truth is, is that it would be way cheaper to pay people for good health than it would be to spend the next 150 years wringing our hands going, I don't understand why Ben smokes so many cigarettes. How do we help him? Because you're not going to figure that.

Speaker 1 1:11:36
Yeah, when you put it that way, it's like, so it sounds so easy. It's like I know how to get to all these kids now. I'm just gonna offer them 1000 people or PlayStation games. I do really think that would work. Oh,

Scott Benner 1:11:47
my God, are you kidding me? What about just a bucket of PlayStation gift cards or something like that? Seriously, no kidding. Like, like, come in here. On boy, here's how I would do it. I go, Look, I want to first give you one of these for free for doing nothing but being you. You're a terrific kid. I love you. Now, if you want another one, when you come back in three months, you're going to pre bullish your meals, and we're going to bring your A 1c down a little bit. You do that, get to get another gift card for your PlayStation, and then we'll find another thing for you to do, and before you know it, you'll have tricked them into taking care of themselves. Yeah, exactly. I'm a genius. No one, no one listens to me. Stephanie, that is great. No one listens to me. But people care about one thing, money, okay, like, all right, I'm in I understand what to do. All right, we're good. You have anything I didn't ask you that you want to

Speaker 1 1:12:38
bring up? No, I think that was pretty much everything that sounds it was great talking with you. No,

Scott Benner 1:12:42
I had a good time. Do you think they will name a day after me one day, if this works? Yeah, you think so?

Unknown Speaker 1:12:49
I do. I think

Speaker 1 1:12:52
they do. I think we'll have an annual day for you at, OHSU, honestly,

Scott Benner 1:12:57
I want that. I want that I want to become, I want to I look at, can I be serious for a second? Not that I wasn't serious about the other stuff. I found a way to help so many people. And Stephanie, all it did was leave me with a feeling inside that there were a lot of people I didn't help. So I'm very happy with all the people who come to me and say, This saved my life, and oh, my god, I'm so healthy because of you. And thank you. And people who joke about, like, do you know there are nine states in America that have a juice box license plate because of the podcast? Like, I'm not even kidding. That's really cool. I'm not even kidding about that, okay, like, and that stuff. I don't want people to think I'm like, dead inside. Those things are all very cool and make me feel great. Five stars. I love it. I'm a T, 1d and I love this podcast. Thank you, Scott. I'm not alone. When I was diagnosed, I felt like I was the only one who knew the true meaning of diabetes. My mom introduced me to the podcast, and I realized that there are millions of people who don't who understand the feeling the same way as I do now. I love listening, and I feel comfortable listening my pets even like it. You know, these go on forever, okay, like I'm being serious, like those reviews and notes, they happen every day. They go on forever, and it's fantastic. But in my heart, it's not enough people. And I know there's a section of society I'm never going to touch, and so I want to find a way to find them too before, yeah, and

Speaker 1 1:14:21
I guess, just to add on to that, just to getting you know again, family, patients with families who are able to do these things, but I couldn't recommend enough getting involved with your local JDRF walk when it's in town, it's such a feeling of community. And also really consider going to diabetes camp. It is such a once and well, you'll go every summer after that, but it is such a unique and like special experience to be around. Even for me as an I didn't go as a kid because I was afraid of overnight camps. And going now as a provider like it is so fun and. A cool experience that I just can't even put into words. So yeah, I can't recommend that enough.

Scott Benner 1:15:05
Dr Marwa, who's actually part of the Grand Rounds series, said that during his training, part of his training was to go to diabetes camp, and that a big piece of his understanding about people's lives with diabetes comes from being at camp.

Speaker 1 1:15:19
Yeah, oh, yeah. Like the freedom at the Gales Creek camp, which is what we have here in Oregon. The counselors, they carry all the diabetes supplies for the kids, so the kids can just run and be free. And I think that is, like, the coolest thing ever. Yeah,

Scott Benner 1:15:35
no, he just, he learned about bolus thing and what people understood and what they didn't understood. He actually got to see insulin work like live in people's bodies, and he said it was a huge help when he was learning to be an endocrinologist. Yeah. Nice, amazing. Okay, all right. Well, Stephanie, thank you so much for doing this. I

Unknown Speaker 1:15:51
really do appreciate it. Yeah, thanks.

Scott Benner 1:15:53
Hold on one second. Jalen

is an incredible example of what so many experience living with diabetes. You show up for yourself and others every day, never letting diabetes define you, and that is what the Medtronic champion community is all about. Each of us is strong, and together, we're even stronger. To hear more stories from the Medtronic champion community, or to share your own story, visit Medtronic diabetes.com/juicebox and look out online for the hashtag. Medtronic champion. A huge thanks to a longtime sponsor, touched by type one. Please check them out on Facebook, Instagram and at touched by type one.org if you're looking to support an organization that's supporting people with type one diabetes. Check out. Touched by type one. Today's episode of The juicebox podcast is sponsored by the Dexcom g7 which now integrates with the tandem T slim x2 system. Learn more and get started today at dexcom.com/juicebox, are you starting to see patterns? But you can't quite make sense of them. You're like, Oh, if I bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the juicebox podcast. It begins at Episode 1000 you can also find it at juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 thank you so much for listening. I'll be back very soon with another episode of The juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes. I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? The episode you just heard was professionally edited by wrong way recording, wrong way recording.com, you.