#506 Listen to the Doctor

Kathleen Moltz, MD, ProMedica Pediatric Endocrinology is on the show to tell Scott what she thinks of the Juicebox Podcast.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to Episode 506 of the Juicebox Podcast. it finally happened. I received an email from an endocrinologist who wanted to come on the show. I've been waiting for this for so long.

On today's show, I bring you Kathleen bolts, MD, pro medica, pediatric endocrinology, she's got a title and everything is like legit. I have been waiting so long for this day, to get an endocrinologist, someone who's been helping people with type one diabetes for years. And then they found the podcast and have some thoughts to share. I'm up for this, you know, this is what I'm looking for. I want to talk to more endocrinologist, you've come on, keep coming. I love this. I love this. Please remember, while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan are becoming bold with insulin. And while I'm at it, let me just say that Dr. molts is representing her own opinions right here. And not the opinions of any of her employers, past, present, or future. I edited this a week ago and I am still excited to do this right now. I'm just putting some ads on this thing and get it out to you guys. So excited.

This episode of The Juicebox Podcast is sponsored by the Dexcom g six continuous glucose monitor. You can find out more and get started today. even@dexcom.com. forward slash juicebox. Do it just do it. Just listen to me. Just go do it. While you're out there doing things want to check out the Omni pod dash you may be eligible for a free 30 day trial of the Omni pod dash tubeless insulin pump. I don't know if you just heard what I said. But you could be pumping with insulin for free for 30 days. Find out if you're eligible. omnipod.com forward slash juice box. I'm getting right to this a long episode. I loved it. I was very emotional at points. I don't want to ruin it for you now. But dig in Kathleen's terrific. This is an insightful episode.

Kathleen C. Moltz MD, FAAP 2:36
I'm Dr. Kathleen Moltz. I'm a pediatric endocrinologist and I'm really excited to talk to you, Scott,

Scott Benner 2:44
I'm very excited to talk to you as well, I have been waiting for an email like yours for a very long time. So thank you very much sincerely. I'm genuinely saying that. Okay. So I guess Let me tell you why. I start this podcast. And I think to myself, everybody can benefit from good information. And I think that's counterintuitive to how people think about it. I think I think on some level quietly in spaces and corners, there's the idea that some people can understand this stuff better than others, and that some people just aren't going to do as well as others. And maybe that's maybe that's it, maybe that's just how it has to be. And I always thought, like no, like, we could boil it down to these simple, simple ideas that I think almost anybody could understand. And then once it started to prove itself out on the podcast, I started thinking like, maybe doctors will hear it one day. That was really like, like my thought. And I do get notes from people who tell me that they found the podcast through their physician, which I think is amazing. But if you listen, you know that every once in a while I throw it out there. I'm like, Hey, if you're a CDE or an endo like and you find this helpful, and you're the one that said hello, so thank you so much.

Kathleen C. Moltz MD, FAAP 4:01
That's exactly why I actually sent the note. I actually didn't start listening to your podcast until maybe a month before I sent the note. Okay, just maybe two three months ago, um, I had heard about it before. I mostly listened to other kinds of podcasts, science fictiony types of podcasts on my 70 minute one way drive to and from work. And I got caught up on all my other podcasts. And then I was looking for something so I searched for a bunch of different diabetes podcasts, listened to one super boring listened to another really not focused on type one focused on type two. So I'm like well, I've heard of juicebox before I'll try this and I listen to one of yours and I enjoy So I listened to another one. And I enjoyed that. So then you mentioned the pro tips podcast. And I started at the beginning, just like you recommend. And I listened to the pro tips podcast, and I almost quit listening to you. Because Because I'm excited. Go ahead. Why? You bash doctor?

Scott Benner 5:22
Do you feel that? Is that how it feels?

Kathleen C. Moltz MD, FAAP 5:24
That's how the first time that wasn't just me because I turned to everybody in my group. And I said, after I listened to a few more, I didn't give up. I listened to a few more. And after I listened to a few more, I told the rest of my group I said, Hey, guys, you have to listen to these protests. But you've got to get past the first one because the first one seems to medical bash, I call it doctor bashing because I'm a doctor, but like, it bashes the medical community a little bit. Not. I don't think you intended it to come across that way. To be honest, having heard now Oh, gosh, how many of your podcasts have I heard? I don't even know. I'm 130 140 out of the 50 150 500. Right. Um, but it definitely is harsh. And one of my nurse practitioners who listen to the first one came to me and said, Dr. maltz, I don't know if I can keep listening to this. Does he continue on like this? And I said, No, no, he doesn't, you have to listen, the concepts are really awesome. And it got me thinking about a lot of things. And that's how I binge through all of the pro tips, and then all of the defining diabetes, and then I listened backwards through 2021. And then I started in 2015. And I'm July or August of 2015, at this point, and still keeping up to date on 2021. And moving backwards through 2020. Wow, that's amazing.

Scott Benner 6:57
First of all, everyone should listen like that. Thank you very much for saying it that way.

Kathleen C. Moltz MD, FAAP 7:02
You're welcome. I agree. That's how I tell people to listen, when I recommend your podcasts, I can't

Scott Benner 7:06
wait till you get to the first handful of them. That's gonna be super interesting to hear how you feel about those. So okay, so now I want to say that if I was letting you take this out of our space for a second, if I was a garbage guy, and I every week, I rode by your house, and I grabbed the garbage. And I did a really good job of grabbing the garbage for some people. And for some people, I did a medium job. And for some people, I left trash strewn on their front yard. And, and I was going to make a podcast to talk to all people who are serviced by garbage men, I might start by saying, Hey, I know some of you get great service. And I know some of you get what you think is great service. But some of you aren't getting good service at all. And so I imagine if I'm a, if I'm now the garbage man, and I'm the guy that does a great job. I'm like, Hey, what's this about garbage men do great jobs, but they do a great job, not everybody. And so I get that. No, but I'm super. So is that actually a term like is Doctor bashing like a, like a term that exists in this like ice that I'm just not aware of?

Kathleen C. Moltz MD, FAAP 8:11
It really is. Um, so I belong to a number of Facebook groups. I don't spend a lot of time on Facebook, but I do find I get a good amount of support. And there's great forums for asking questions. Some of the groups I belong to are women physician, some of them are endocrinologists, both adult and pediatric. Some are just pediatric. Some are just like, people who are interested in the same things are going through the same life experiences. And doctor bashing is a real thing. We often I'm not going to speak for we I'm going to say I have come across a number of situations where people will express their disappointment in their interactions with their group of physicians, nurse practitioners, physician assistants, not always being able to tell the difference between us. And many people in the same conversation will agree with them. And then they'll turn and look at me and they'll say, Oh, I'm sure you're different. With very little sincerity. So there is a little bit of what's the right word. defensiveness that many of us come into conversations with when we hear others making critical statements that don't seem to recognize what at least I feel like most pediatric endocrinologists basic motivation is Yeah,

Scott Benner 9:54
well, I would imagine Everyone's so I want to say this. I imagine everyone's Basic motivation is good. Like, I think it would be a weird, a weird profession to take up if you weren't interested in helping people. But I don't know that that makes a difference. For this, maybe maybe I do sound harsh. I don't know if that makes a difference. Ready? Here we go. I don't know if that makes somebody if you're not good at your job. Like intentions not helpful at that point. If, if, if a person comes into a medical practice, and says, Hey, I learned how to Pre-Bolus my meals, and I fixed my basil rate and look, my a one sees 5.8. And then you spend 10 minutes yelling at that person. I don't care whose feelings it hurts. You're not a good doctor. Right? Okay. That is correct. That happened. I agree. A lot, a lot. Actually, two people. That's really sad. Yeah. But now I think I see the other side of it, though. Because if I'm a doctor, who doesn't have great up to date information for people, and I think to be fair, the advent of continuous glucose monitors, pumps faster acting insulin could leave a lot of people who have been teaching people how to manage type one, since the ad is at a loss. And so if they're used to seeing an A one, C, that's 5.6. And thinking, this means these people are having frightening lows, because no one knows how to get an A one c like this, I even get the initial reaction of like, Oh my god, you're gonna kill yourself. But how do you, I don't know how to take that person and teach that old dog a new trick. And so I have to put myself in the position of speaking to the people who are going to end up getting yelled at and empower them. So I'm not bashing the doctor as much as I'm telling the person to expect better and that some doctors might not have better to give. Does that seem fair?

Kathleen C. Moltz MD, FAAP 11:51
That is fair. Yeah. And again, as I continue to listen to the pro tips, and has now become a serious fan of the podcast, in general, I agree. And I think the way you get to physicians and the rest of the world, is by having exactly what you're putting out a really enjoyable, easy to listen to friendly podcast, that goes over information, not just in a dry academic way. But also in a way that's conversational, that brings in real life experiences, that talks to people who are living the diabetes, and not just people who are practicing the medicine for whatever, 10 or 12 hour shifts that each of us does.

Scott Benner 12:47
Well, I appreciate that it struck you that way. Because that was surely my intention. Which because I think it's funny, because I'm sort of I don't think I'm growth Personally, I have a very low threshold for bullsh, I guess. Right. And so I know that I know, people, like I know, that's gonna sound strange. But I think one of the reasons I'm good at communicating with people is because I, there are times where I know what people need, not just what they think they want, and you need good information. But you also need it to be delivered in a way that you can take it and and you need to be able to take it up and it can't be thrown at you all at once. Listen, I've spoken at so many live events, I have lost count of them. And I will stand at the back of rooms when doctors present. And I think to myself, I understand this. And I can't make myself Listen to this. And it's not because it's boring. It's because it's so academic, that it's not even usable. Right. And so you're sitting Yes, it's a failure of people not to understand their audience. And to understand, you know, I'm gonna say something that feels committed to saying I think outside of the box, and I hate that, but you have to meet people where they are.

Kathleen C. Moltz MD, FAAP 14:09
Absolutely, absolutely true. completely true. I think too many professionals of all fields, when they're talking to people outside of their fields, don't do a great job of remembering how little they knew, because before they became a professional in their own field. And

Scott Benner 14:31
let me see what's hard. You may not be able to answer for your own personal safety and 42. Well, I'm 35 that if that's where we're going with this? No, no, no, no, the answer to everything. Oh is 42. Okay, you know, the most commonly guessed number between one and 137. If you ask people for a number between one and 100, they will most randomly come up with 37. Don't worry about that. Let's move on. So I'm going to ask you a question. You might not Feel comfortable answering? Am I better at being an endocrinologist and some people's endocrinologist in regard in regards to giving people information that's usable?

Kathleen C. Moltz MD, FAAP 15:14
you actually are okay. And I think I can go on record by saying that you also have the ability to make endocrinologists better endocrinologists, if they take what you're saying, and think about it, and turn it around in their own heads and their own experiences. And I say that coming from I actually, before we had this conversation, I sat down and did like a little Google document my career and diabetes tab. And there has I sort of, I sort of want to like, share it with you. And that's

Scott Benner 15:47
okay, I would love you to,

Kathleen C. Moltz MD, FAAP 15:49
um, I graduate, I'm going to date myself now. I graduated from college undergrad in 1986.

Scott Benner 15:58
Oh, bedrock University.

Kathleen C. Moltz MD, FAAP 16:02
Um, and the first insulin pen didn't come out till 1985 was the novo patent. When I graduated from medical school, we were using regular and NPH human and pork, two shots a day, nobody did more than that. And a standard new patient stay in the hospital was six to seven days, right? And so the first day or so you're on IV insulin, and then you went on every six hour regular. And then from the regular, we calculated your regular and mph doses and gave you your meal plan. And that's that's the cut and dry. You have to

Scott Benner 16:41
Can I ask you a question before you go on? What was the medical intention of that? keeping people who otherwise would die alive as long as possible? Sorry, I have a phone ringing and you're not allowed to have a personal life while you're making this podcast. It isn't a personal life. It's a landline I want to get rid of. I think you know, it's somebody right now seeing if you have solar panels on your house, or if you'd like to get an extended car warranty.

Kathleen C. Moltz MD, FAAP 17:05
I may have the liberty to update my market.

Scott Benner 17:09
100% Yeah. So so and so. So that's not a judgment. That's no, no, no,

Kathleen C. Moltz MD, FAAP 17:15
I understand. It was truly, this is the best window that will help people live a reasonable life with low risks of having hypoglycemic seizures and dying. And probably higher than we want risks of having high blood sugars and complications. Yeah. But But as much as we thought that high blood sugars weren't good, the dcct started in 1982. It didn't stop until 1993. And that's the year I finished residency. Wow. So we didn't have all of the stuff that you and your daughter benefited from, which was even checking your blood sugar more than once a day was actually important right now, in those first date, years when I was in residency, like having a patient come in, and having a handwritten logbook, because nobody had download programs, and looking at the logbook to see how many days of numbers were written in the same color ink or pencil. So you could guess how many of the numbers were accurate and how many of the numbers weren't? That was kind of the standard we worked from. And you manually calculated averages for breakfast, lunch, dinner, bedtime, based upon, you know, the three glucose numbers a week in each category that someone might get you, you made a guess about which regular and NPH doses might need to be changed. So wasn't malicious. It was truly what we had to work with.

So So tell me as a person who came up through that, how do Is it just not? What's the question? Why is it so difficult to learn something new when you've been taught a certain way? So you gotta listen to the rest of my story? I'm listening. Go ahead. Okay. So, I graduate from residency, I go into fellowship, humalog is approved at the end of my fellowship, and I have, I think, a really excellent fellowship. Um, I feel like I got excellent training from people who are thought leaders and research leaders. I didn't even through the entire training, have the opportunity to teach another patient how to give an insulin injection. And I joined a practice that was a private, mostly outpatient specialty only practice in the greater Boston area. And the practice model was no one is admitted to the hospital unless they're in moderate to severe decay. A, we teach everybody in our office, the doctor stays after work and does all the teaching. And so I found like my second day of work, I'm like, Okay, I have to teach somebody how to give insulin. And I've never done this before. The practice, I think was really instrumental in my being encouraged and supported and being more assertive. I'm not going to say aggressive with insulin. So we use humor log on almost everybody, we would mix humor log regular and mph or humor log regular and ultra latte. We would do two or three shots a day, we expected our patients to check blood sugar's four to six times a day, we tried to we beta tested a bunch of the original one touch glucose meters, the old clunky ones. And by the time I finished at that first job, I felt like my practice of diabetes was pretty aggressive. There were no CGM still, right. They were just the blinded occasional patients who got the blinded professional CGM, which were really impossible to use. They were painful to put in. It's really hard for somebody to gather enough information that you can look at the less accurate old CGM and make any sense out of it. And it was three days. Yeah. So I moved on to my second job. It was a more academic job. And at that point, when I changed jobs, the mini med Guardian CGM was just released. Um, we were still sometimes using pork insulin. And the Omni pod hadn't come out yet. By now, I understand. So through the next few years, I was kind of the lead in the diabetes section. And I tried to encourage continued proactive, let's give shots at lunch. Let's do insulin multiple times a day, let's I'm a very big pump proponent. So I've never had artificial durations of diabetes you have to have before starting on an insulin pump. And that, by the way, drives me that's loony. I hate sorry for the swearing. I hate I hate when people say you have to have diabetes, for a certain length of time before you can benefit from a pump because it's artificial, right? There's zero common sense or science. Do you think that go ahead, I'm gonna jump in for a second is that just end up being like the pot roast story then? Like, I know, you guys, I love your pot roast story? Yes, it's the pot recipe. It's just that this is how we do it. And it might stem from that's what we've learned through insurance problems, or that's what we've learned through the company. So you just give people this artificial number, so that they're not, it's almost, it's almost the idea of you should under promise and over deliver. Right?

Like it is it is a and there's a surprising number of people that back in the 90s and early 2000s thought that that was very, very reasonable. I, I never did that. I had people argue with me. Um, why are you giving this person a pump? So soon? You know, we need to have X months of data first. And I'm like, why? How is that? How is that going to affect what we do at the time we set up the pump or any of the changes that we make? And nobody could ever give me a good answer. And I've never believed that. Okay. Okay. So, I'm going to kind of skip ahead,

Scott Benner 23:52
go ahead. I'm making it next. I don't want to forget to ask me something,

Kathleen C. Moltz MD, FAAP 23:55
no problem. Dexcom. Seven comes out. The mini med rebel comes out the Dexcom four plus g four comes out. things move forward. And there's more and more pushback from institutions to follow evidence based medicine and national guidelines. And in retrospect, it I didn't even think about this till I started listening to your podcast in retrospect, my my interest in being assertive and pushing that squashed it frankly did. I was criticized for not following national guidelines. I was put in a position of having to defend why I thought a toddler's target range should be 90 to 200 instead of 100 to 200 which is still a ridiculous range to you.

Scott Benner 24:57
It's not really that big of a difference and an odd range. Well, but so my eyes fit it into the rules. Right?

Kathleen C. Moltz MD, FAAP 25:03
Right. So you're trying to fit it into the rules. But also, I, over the years have found a lot of patients, or rather parents whose kids were diagnosed as toddlers, who never got over their fear of double digit numbers. So if the target range is 100 to 200, and you spend the first x years of your child's diabetes, thinking that a 99 is scary and dangerous, double digit numbers are always scary. And I found that if I gave a family a target range of 90 to something, then they would less scared and then I could move it down to 80. Or I could move it down to 70. Yeah, and I was through that barrier of double digit numbers are scary, we can't see them.

Scott Benner 25:50
You needed that 90, just so you could keep the the moving. Yeah, it's a bait and switch, eventually, you're just gonna keep kind of moving the carrot on the stick, you're just gonna keep moving them a little closer and moving them a little closer, but you needed them to see a non triple digit number so that the anxiety in their mind could slowly dissipate. Exactly. So you're brilliant.

Kathleen C. Moltz MD, FAAP 26:11
I'm not brilliant. Because I let I let my interest and I let my enthusiasm get squashed. And there were a lot of reasons for that for profit medicine is part of it. I'm very happy in my current position, which is my third position after fellowship. I will insert interject here and say that nothing I say, is reflective of my current or previous employers that everything I say is my own opinions in my own work.

Scott Benner 26:42
I don't know about you, but when somebody makes a disclaimer, I'm super excited to find out what they're going to say next. So let me get through these ads quickly and get you back to Dr. molts. Let me think this is off the top of my head. Nothing written down in front of me. I can't see anything. The Dexcom g six continuous glucose monitor. What does it do for my daughter? Oh, it lets her sleep easier. lets her go out with her friends. It lets her find out what her blood sugar is, and what it's on its way to being. That's pretty crazy, right? Not only seeing that your blood sugar is I don't know what my daughter's blood sugar is right now. I'm gonna open up my phone and tell you how's that sound? phones open 81 her blood sugar's 81 aren't his blood sugar is 81. It is one o'clock in the afternoon. And it is steady and stable. I can tell that by what the arrows on my Dexcom follow up are indicating. You see, Arden has an app on her phone, you could do this for Android or iPhone, but Arden has an app on her phone. And right now it's showing her her blood sugar. And should she leave the range that we've preset on her phone, it will indicate to her that she's gone below 70 or above 130. You could make your range whatever you want. on my phone, actually, the range is 70 to 120. Nonetheless, nevertheless, whatever that saying is, you will get an alert if you leave the range that you have set. So if you want to know when you're over 150, it'll tell you if you want to know when it's rising quickly or falling quickly, it'll tell you and it'll tell up to 10 followers of your choosing. Now you can share this with somebody if you want to like your husband or wife or stockbroker, I guess if you have a stockbroker and you want to know what your blood sugar is, doesn't matter, you could as long as I guess if your husband was a stockbroker, to for one there, but not the point, right? You can share it with up to 10 followers. That's astonishing. Other people could be looking out for you to think about that, that can be a school nurse even. Right? Are you listen, are you putting it all together with me. And when you know what your blood sugar's doing, and where it's heading, you can make better decisions with insulin, at least that's how I think of it. I think of it as being able to make great decisions that stop rises and stop falls, you'll find out what you want to do with Dexcom when you get it in your hot little hands. And you'll do that@dexcom.com forward slash juicebox head over today and get started. While you're out changing your life on the internet. Get yourself a free no obligation. 30 day trial of the Omni pod dash is for those who are eligible, so you have to go find out if you are the eligible ones. But there's a pretty good chance you will be 30 days my friend 30 days is swimming and playing and jumping and involved in your sports activities. And if you're an adult like stuff you do with other adults, all kinds of stuff the way you live your life cooking in the kitchen, wandering out in the backyard pulling some weeds. I don't know what your life's like, but am I got a crystal ball. I have no idea but whatever you're doing, you can do it with the Omni pod dash on and decide for yourself if this is the way you want to go. If it is you keep going and if it's not what else Right, they're not like holding me up, you can do whatever you want. But a free 30 days to try an insulin pump is a pretty crazy offer. On the pod.com Ford slash juice box, head over and find out if you're eligible or just pick around or you know what, maybe you're already pre sold. Maybe you're in then get started. Get started today, being unencumbered. It's summertime and on most of the planet, which I don't know if that's true or not, it's summertime around that, like you right now might be in Australia, like, Dude, it's winter, but just go with it. Okay. omnipod.com forward slash juicebox dexcom.com, forward slash fuse box, links in the show notes, links at Juicebox Podcast Comm. Let's find out why Kathleen thought she had to make a disclaimer before she kept talking. People that was one take four minutes straight talking top of my head, I'm legit proud of myself, I don't know if you are or not. But just trust me, that's not easy to do, you should try it sometime. Now here's caffeine,

Kathleen C. Moltz MD, FAAP 30:56
you really get into the habit. And if you are used to looking at things a certain way. Unless you're challenged by patients, or by society guidelines, or by, by articles that you read or conferences you go to, unless you're challenged in some way. After 25 years of doing this, there's certain habits that you form, just like you would if you were a car mechanic, and you had to then take care of a newer car that had a newer system, it would be a little bit of a switch.

Scott Benner 31:30
Can I ask a tough question? Absolutely. Was I bashing? Or did it just make you uncomfortable to look at yourself like that?

Kathleen C. Moltz MD, FAAP 31:39
I think both. Okay. I think both because if it was just me, that said, this is this is the problem with doctors, I would absolutely accept that it was my own issues. And I do in fact, thank you for the wake up call. Um, but it wasn't just me. Other people that I had listened to the podcast came and said, I don't know if I want to listen to the second prototypes, right. And I said, I have to insist you listen to the second pro tips.

Scott Benner 32:11
I like that there's a person that can force people to listen to the podcast. That's very lovely. I wish everyone had that power. Well, okay, so follow up question to that is,

Kathleen C. Moltz MD, FAAP 32:21
absolutely. And that's that kind of catches me up. I'm sorry, that catches me up to the President, which is like, I find I'm using more of your words, I find I'm listening to my patients who are telling me things that I now can recognize as coming from whether from your podcast or similar concepts, I can recognize what they're saying to me. Yeah, so we're speaking the same language again. And that's, that's really why I wrote it,

Scott Benner 32:47
I have to ask you how that makes you feel like on a personal level,

Kathleen C. Moltz MD, FAAP 32:51
it makes me feel awesome. It makes me feel just as excited about practicing pediatric diabetes and endocrinology as I did the day I

Scott Benner 33:00
graduate. That's excellent. I'm so happy for you that I had any little part in that makes me feel very warm inside. And I'm grateful that you're telling me about this. And, and moreover, that you're willing to tell it to other people? Is there is a God complex among doctors a real thing?

Kathleen C. Moltz MD, FAAP 33:21
I think more so in the generation that came before mine. Okay. So I get I graduated medical school in 1990. I think there was more of that in the people who graduated before that. Um, I don't think it fails to exist today. I think people who have that personality are more likely to be choosing non pediatrics and non pediatric endocrine careers. Because

Scott Benner 33:58
Do you think it's ego? Or do you think it's the protection? Or do you think it's both and provide protection? What I mean is, if I'm the General and I'm telling you where to shoot the missiles, I don't need seven people yelling in my ear while I'm trying to figure it out. It's already enough pressure. And it's on me. Is that is that part of it? Or is that is is there a part of it? Hey, I'm a smart person. I went to a lot of school, you are not as smart as me. You did not go to as much school as me and shut up like it is or is there a black? Go ahead, Tommy,

Kathleen C. Moltz MD, FAAP 34:26
there's a black, there's a black. So I think again, before, kind of the time period I graduated medicine was taught as you are in charge of the health care, you are the leader of the team. And whether it was my medical school, which was very avant garde, or whether it was the time that I was in residency and fellowship. Things have really switched to you are a leading member of the team, but you are not the only member of the team and team based care works better than solo practitioners sitting on their doorstep handing out prescriptions. Without instruction,

Scott Benner 35:13
does it? Does the podcast become more difficult? Because it's a faceless, nameless person who, by the way missed 53 days of his senior year of high school and never went to college? No, okay. It just it just, it's just difficult. Is it difficult to I'm imagining there are some doctors that just probably out of practice, or, again, out of comfort or or maybe security, say, if the system doesn't tell me that these are the rules we're following? I don't want to hear about it. Right?

Kathleen C. Moltz MD, FAAP 35:45
That is correct. Okay. Um, I think my viewpoint has always been, I know a lot about diabetes, you know a lot about your kid, we have to work together to figure out a system that's going to work. And where I fell behind was in recognizing how many internet based resources there are, like podcasts, like blogs, um, that

Scott Benner 36:17
I'm not aware of other resources for anybody, I mean, you have those resources podcast, and then I don't know, Danny, Jenny, Jenny's different. Jenny's a deity. She's a diabetes goddess, right? That's where she is.

Kathleen C. Moltz MD, FAAP 36:30
But she is another resource, and you can contact

Scott Benner 36:34
me, I just don't want people to listen to their pockets.

Kathleen C. Moltz MD, FAAP 36:37
But that is a part that people now have available that wasn't available when I graduated. You got information from textbooks that were already obsolete by the time they came out? Yeah. And whatever Jocelyn published about take care of your diabetes, I actually have a really old Joslin Diabetes book from the 1950s, with glass syringes and a picture black and white picture of a girl at diabetes camp smiling.

Scott Benner 37:06
Well, I think this format is amazing. I'll tell you three is the official number of book deals to write about diabetes, I've turned down. And always for the same reason, because by the time I write it down and hand it to somebody, it's too static, and it's going to change and, and then one day, someone's going to pick it up and make bad decisions with it. I agree. That's why I like this, this way of talking to people.

Kathleen C. Moltz MD, FAAP 37:30
I agree. But go ahead. And I haven't thought I will. I will preface this by saying I haven't looked at your blog. I really haven't. You don't have I don't have a lot of time to read stuff. So I find the podcast to be perfect for me. Yeah. Um, but do you have like, cheat sheets that go along with the topics? know people who want something? Want to hear my

Scott Benner 37:55
theory on? Why not? Okay, yeah, I don't have time. I am literally I am the podcast. I know that guy. There's no one else. So you have that group of volunteers that are like cataloging, they show off a little bit. If I had the ability to yell at them, I might yell at them. So But no, anybody who else is generally nice and amazing. But here's my theory. It has to come in slowly. And it has to come in organically to your brain. Because that's how you'll understand it. So I mass market talking. And you can listen to other people who say like, Oh, I read a lot of people read my blog, or a lot of people listen to my podcast. I know how many people listen to his podcast. Based on numbers, no one's listening to them. Okay. So when you're, when you are talking to hundreds of 1000s of people at a time, you have to come from a different perspective. So I can't speak to everyone. I can't meet people where they are. So I have to start with slow matriculation ideas that are get repeated in different ways. They need to be able to listen at their own pace. They need to be able to go back and listen again, if they don't understand they do need a place to go ask questions if they don't, if they can't get something together. But I think that there are some people you can bring up to speed too quickly. And there are some people who are readily available to the information and can just absorb it. In three seconds. I think there's an episode called diabetes fast forward, where I had a woman on who found the podcast, in the hospital during diagnosis. I heard it and never once experienced any of the problems that you associate with people who live with Type One Diabetes. Now I heard that's amazing to me. All that tells me is that's possible for some people. Right? And for other people, for other people. Like I'm following a kid right now, who's I think had diabetes for four or five years and the mother reached out just said, Look, I'm lost. I listen. It's not hitting me, right. I'm always chasing the insulin around. I don't know what I'm doing. So for her I said you call me on the phone. And I can't do that for everybody. But the process of me speaking to her for an hour, and then getting to watch how she figures it out, helps me talk about it so that other people in her situation can maybe benefit. And I think that's it, I think there's something to do with the way it's disseminated my theory about how it should be disseminated and my understanding of how to speak to people and that I'm speaking to a varied audience, but do not want to leave anyone behind. I've said here all the time, I do not understand when we take a classroom full of people, choose the five that are, you know, need the most help and then abandon the other 15. Because we want to make sure no one falls behind, I think there's a way to teach everybody where they are, without letting anybody fall behind anybody who's interested. So if you, I find that when I speak to people, the one, the one factor that ties them all together, the one reason I can tell they're going to be successful one day for whatever they want success to be, is because they're genuinely interested. And they're trying, that's the, that's what you need more than anything. Now, if you try really hard with the wrong tools, or the wrong information, then you're screwed. And then diabetes will make you insane, you know, because you're going to be like, I don't understand, they said to Pre-Bolus. But if your Pre-Bolus in 10 minutes too long, or five minutes too short, it's not gonna matter if you're Pre-Bolus, he's just gonna create a different problem that you don't understand down the road. Will everybody get to where I am? Where to where Jenny is? I hope so. But I don't imagine they will. But I do think that a lot of people can, can roll around with six a one C's without getting low all the time, and get to keep all their fingers and toes and vision for their whole life and live into their 80s that I think is possible and very humbly, or maybe not. So humbly. I believe that information lies within the episodes of this podcast. So I agree, but I have a question for you. How to phrase this, okay, it's hard, isn't it? Good?

Kathleen C. Moltz MD, FAAP 42:09
It is hard. You're this? I'm not. So, um, I agree with everything that you have just said, I think that having the right tools, and having the information at a pace that you can accept, and understand and implement, and then reassess. And move forward is super important. And so I'm interested in hearing your, your opinion on how new onset education with a family that has no background or information about diabetes can be better?

Scott Benner 42:55
That's easy. See, yes, made easy question. And remember earlier, when I said I wrote something down to ask you, it says, How do you fix the system? I will just erase that. And we'll just start right now.

Kathleen C. Moltz MD, FAAP 43:06
And I'll share with you my ideas after

Scott Benner 43:08
I am. I'm very excited to hear your ideas. I'm excited to hear anybody's ideas about this for me what I've seen work. And I want to say something I'm going to preface this by saying that I came up through a community of bloggers about diabetes, I have been podcasting about diabetes for this is the I'm halfway through the seventh season. So seven full years, no no BS 20, you know, episode seasons, like, you know, every week, seven and a half years, I have still not caught up to podcasting for as long as I blogged. Okay. And I came up through a system where those people no matter what they would say public facing, would say to each other privately. I am not teaching anybody about how to use insulin, because I'm not getting sued by somebody. Okay, so they there were people who knew and would not say, and there were people who didn't know. And those people who don't know, and still want to say exist today. I'm fascinated by you, people. If you're listening Shame on you. I know what your a one C is stop acting like you should be telling other people what to do. Okay. That's, that's very scary to me. But the idea of not giving people information is even more frightening to me. So you can't say there's no one that gets to decide who gets the information and who doesn't get the information. There. There are some honest truths about the world. And some of us don't know how to do algebra. I'm one of them. Okay, but you don't not teach algebra because I don't understand it. So everybody gets to hear it. Hopefully they'll all respond to it well, if they don't, protecting them is not protecting everyone. So you can Not, should not, in my opinion, hold back information for the fear that someone's not going to react well to it. So what do you tell people when they're newly diagnosed, you say, Listen, this sucks. This was this is a bad turn, I am sorry, I'm not going to lie to you, this ain't going to be fun for a while. But on the other side of this feeling, and you will go through a number of the of the impacts that you would associate with any kind of loss, right, this is a loss of health, you're going to feel that way, it's going to be overwhelming sometimes. But there are some empirical truths about using insulin, I'm going to teach them to you. And then with any luck, they'll start making sense to you over time, and you will find a rhythm. And one day, it won't feel like this anymore. That is the first thing I would tell them. And then I would say the word basil about 1000 times until they believed it. Because people ignore basil. In a way that is frightening. It is absolutely the basis of the entire thing. If your basil is not well tuned, if you are not flexible, about about your basil growing as your honeymoon ends, if you're not flexible about using your basil, when you have your period, or when you go from being active to inactive or whatever, nothing else works. And basil is spoken about, like you inject it, and you never think about it again. And that's that that is a travesty to not teach people how to use Basal insulin, they should be the most important thing in the world. I agree. Okay, after that. If they're honeymooning, and that makes you uncomfortable telling them the Pre-Bolus. Fair enough.

But you have to tell them in a normal situation, we're going to need to Pre-Bolus your meals, we can't right now, because your pancreas is still working a little bit. But moving forward, that should be your expectation, you don't leave that bit out, and then get them used to doing it one way so that when it's time to do it the other way, they can't make the leap, right, you got to show them the 90 so they they believe in the 90. After that, you have to find better words for glycemic index and glycemic load, because they're boring and they feel like school. And and because of that doctors see people glaze over. And don't go over it enough. Understanding the difference between 10 carbs of white rice 10 carbs of basmati rice, 10 carbs of banana and 10 carbs of mashed potatoes is the whole thing. You have to be able to like stand there and kind of groove with it and go, alright, my insulin to carb ratio says this, but I got a ripe banana here instead of an unripe banana. So I'm going to go out and a little harder, you have to be able to do that. From there. You have to tell them that they're always going to need to be flexible. And there is some vigilance involved. But that over time, these things become so Matter of fact in your life, so obvious to you that you won't be thinking about it the way you're thinking about it. Now, it won't, it won't take up so much space in your brain one day. And the faster we get to that, the more quickly that you have experiences to learn from the less often that you have one of those experiences, and then run around crying and screaming and full of drama. I almost killed somebody. Isn't it crazy that a cookie saved my life? Like it's crazy to cookie save your life? like okay, like, let's let's keep going now, right? Like, why did you need the cookie? What happened here? Don't waste this experience, right? The more more experiences you waste, the more experiences you're going to have to have go wrong before you figure it out. You tell people that and then trust them. And some people are going to want to do well, some people aren't some people are going to struggle, some people are going to thrive. And then you figure out who those people are and reorder them and go over it with them again. But I have I have about 90% confidence that there is no one you could find that I couldn't speak to for an hour and stabilize their blood sugar's in less than 48 hours after that. And if I can do that, then everybody listening should be able to do that if you're a doctor and endo and if you can't, you got to look at yourself and ask why. Like, why is this my job if I can't do that, it would be like saying I change people's tires. But I can't do the cars was six lug nuts. It's just beyond me. I can't figure it out. You can figure it out like and if you don't want to figure it out. have the nerve to tell the people that say look, I'm going to do a good job for you. I'm never going to do a great job for you. We're going to get your a one c two, seven. And if that's okay with you, I'm the right man for your job. But if it's not stop looking at me like I have the answers because while you're not and I'm directly speaking to doctors, while you're in helping those people, those people believe you are helping them. And then they go home and have experiences that counter that feeling. And you are making them crazy. You're telling them It's okay. And then they go home. It's not okay. They don't know what to do. They can't trust how they feel. They want to trust you. And there's a mental conflict that happens that I've seen burden people to the point of wanting to end their own lives. So you can't just you have to at least be honest with them. there that was way more than your answer to your question. I'm so sorry. I talked forever. I'm going to talk

Kathleen C. Moltz MD, FAAP 50:37
to a lot. So thank you, first of all, um, I think I've worked with a lot of different doctors, nurse practitioners, diabetes, educators, dieticians, social workers, psychologists over the years. And there's definitely something that some people do well, and some people don't do well. And that setting up the fact that what someone needs to know, in the crisis moment of learning that your kid has diabetes isn't all there is to know.

Unknown Speaker 51:21
I'm

Kathleen C. Moltz MD, FAAP 51:23
my entry into a room for years has been Hi, I'm Dr. Kathleen Moulton, I'm sorry to meet you. Your kid has diabetes, none of us wanted that. But I'm glad I'm here to help you. And what we're going to teach you for the next couple of days in the hospital is going to be the beginning of what you need to know. And I think giving people all the information at once, when they're struggling with figuring out the beginning stuff doesn't necessarily work. But making sure everybody knows all of the stuff exists and has access to it, right? I think is important. So like to give the to give the off off label example, you're not going to have somebody read Shakespeare if they can't identify the letters of the alphabet.

Scott Benner 52:22
know for certain, I mean, if you ask me more directly, I'd say the defining diabetes series is huge, because it takes weird terms that you don't know, it puts them into some context, and gives you an example that you'll probably bump into along the way of it. That's huge. I, I have to say that at the end of all that I would probably tell them, everything I just said to you is probably going to fall out of your head in the next 30 seconds. And I don't expect you to hold on to it. But here's where we're going to start, I'm going to try to help you get your Basal insulin, right, we're going to figure out your own son to carb ratio. And then we're going to move forward. But I think what you need to leave with them is the idea that this is going to change, these ratios are going to change, right? That because the amount of time that I see people who can't take their basil rates from point 252, point three, five, because they think it's an exhaustive amount of insulin that's going to kill everyone, right? You know, like, they they like no, no, it's point two, five, I use my personal example all the time, someone handed me novolog in a hospital. And for five years, I just believe that's what insulin was. I didn't know there were other brands of insulin, I had no clue. Because the guy in the white coat was said, Hey, here's your insulin. I was like, Oh, this is insulin. I never once could have questioned that. And when someone told me, You should try a Piedra. I was like, oh, like I remember the moment I said, how would I be able to do that this is insulin novalogic insulin, I wouldn't be able to try another instance, the doctor didn't say another insulin, you get caught in that loop so quickly about trying to get somebody to Pre-Bolus trying to get them. So you can't My point is Yes, I understand. They can't know too much. They can't run before they walk. That's obvious. But you can't tell them walking is the only thing that exists in the world. Because then they get scared and screwed over and they get stuck walking, then

Kathleen C. Moltz MD, FAAP 54:15
agreed? Yeah, agreed. Yeah, no, I think we're I think we're saying the same thing. I think I think a lot of people, really, a lot of doctors, a lot of educators don't do that second part. I think we're all pretty good at doing the first part, which is this is what you need to know to survive and get your kid home from the hospital. Or if they're not in the hospital. This is what you need to do to survive. And the part that a lot of people miss is and everything is going to change, right? And 90% of what we thought was true 10 years ago is now not true. And that's going to be the same thing. 10 years from now.

Scott Benner 54:57
Two questions about the same sentence. Do you I agree with the sentiment that that's do not die advice. And do you hate that? That's the way I say it. Yes and no. Oh, thank you. The more you agree with me, the happier I get just so everyone can understand my psyche.

Kathleen C. Moltz MD, FAAP 55:15
No, no, no, that's very. You like you like being right? I do. Most of us do.

Scott Benner 55:21
I don't, I don't like being right. Because I Well, I like everyone likes being right. I'm just stunned when I'm right. Sometimes like, and because the podcast is completely off the cuff. So the first time I said that's do not die advice. Those are just the words that popped into my head. While I was saying it. That pro tip series that you that you listened to was not in any way scripted. And many of the episodes started with me going, Hey, Jenny, you want to talk about Pre-Bolus thing today? And she'd go, okay, because I didn't even tell her what we were going to talk about until we got on the call. So those are real, legitimate conversations that were not pre planned in any way. That's why this works. Yeah, I think so too. That's why this word Yeah. You start writing down bullet points. I just know how my brain works. If I started, if I started some jackass came on a podcast and started reading to me from the Pink Panther book, I'd be like, whoo, I'm out of here. You know, like, pretty quickly, even even if, and here's where I'll talk to you. Forget diabetes for a second. As a communicator. I always say, I don't think I've ever said, Maybe I've never said it out loud on the podcast, but I've learned something about people. Okay. If you put dog crap in a bag, and offer it to somebody, they don't want it. But if you call it free dog crap, they'll be like, cool. I didn't know it was free. Like so there's a there's a, there's a psychological thing that people people will take a free thing. I learned that in a marketing job I had when I was little. Here's what I learned about podcasting. If it sounds forced, or fake, or it's noisy, or people click when they talk or breathe heavy after they talk, people will not listen, it turns them off. Even if you told them 45 minutes into this conversation, you have to listen to all 45 minutes, but 45 minutes into this conversation exists the secret to life 65% of the people would shut off, if you just clicked your words, if I popped my piece, they would just they'd leave. You have to give people they don't even realize it about themselves. But you have to give it to them in a way that they're happy to take it in so that when that information comes out, they're having a good experience already. And so everything that gets said, gets absorbed, you're actually doing a great kindness for people in the future right now. You don't even realize it. But by giving me kind of your quote unquote seal of approval, anybody who hears that, the next time they hear me say something that that rubs them wrong. They'll take an extra second to listen. And so that's where the trust piece comes in. It's super important. I just told a woman this morning, she told me her 14 year old daughter is difficult and won't listen about diabetes. I responded, You're hilarious that you think it's your 14 year old daughter. That's difficult. I also said that. I also said, by the way, for anyone listening, I like I like girls who who ask a lot of questions and aren't pushed around. I think they end up being amazing adults. And it's a little difficult when you're parenting them. But it's a great sign for the future. But she said Why won't she listened to me? And I said, my best guess is you've been wrong about this a lot. And she said I have been I said, so you've come to her with a bunch of stuff about let's try this. Let's try that it's not worked out. And now you're saying I found a podcast, we should try this thing. I was like in the back of her head. She's like, lady, you don't know what the hell you're talking about. And then what is the kids say all the time, I've got this. Every parent listening has heard their kids say, I've got this and then they go do it. And I mean, honestly, most of the time, they ain't got it, you know, but they they're tired of you being wrong about it. And so, that's another thing for doctors to know, every time you say something in that room. And then some parent goes home and tries to assert with that child this thing, and then your thing doesn't work. That kid gets farther and farther away from being able to believe their parents. And lastly, being able to believe you. So you're hurting your own Cause if you're not giving them good information up front. That's correct. Thank you. I'm so worried I'm gonna stop talking you're gonna be like that's completely wrong it

Kathleen C. Moltz MD, FAAP 59:40
Yeah. I'm gonna circle back to the don't die advice. Go ahead, please. Don't die advice is still important.

Scott Benner 59:50
Yeah, not dying is hugely important.

Kathleen C. Moltz MD, FAAP 59:52
I mean, I mean, so and this is a bummer and a downer but like i Last two patients in the past year. And there were horrible tragedies. And I spend a little bit of time every day thinking about what could I teach? What could I do differently? So that doesn't happen again.

Scott Benner 1:00:20
Can I ask these people and I'm sorry for your loss? Did these people die from uncontrollable high blood sugars or from low blood sugars?

Kathleen C. Moltz MD, FAAP 1:00:30
fees? Well, the two this year in the past 12 months, were related to high blood sugar's a couple years ago, it was related to low blood sugars. I don't think there's a single pediatric endocrinologist working, that doesn't have memories and scars on their heart from the people we've lost. And the do not die advice isn't something to be just thrown away, and it's just not enough. Like you have to start with a please don't die. And then you have to go to the end. You I want you to thrive. I want you to have a good life. I want you to enjoy yourself, I want you to have appropriate developmental stages, both in your regular life and in your diabetes life. And then you have to move from the thrive to the really excel

Scott Benner 1:01:21
when you hear me say do not die? Do you take it the way I mean it? Meaning Do you hear me say there's more to this than that? I do now. Okay. You did? I didn't at first, because you have a different perspective than I do. And and the people listening, none of us have had to shepherd along a person who doesn't who's not with us anymore.

Kathleen C. Moltz MD, FAAP 1:01:43
And to be frank, I don't imagine anyone listening to your podcast, or it would be a very rare person listening to your podcast, who has lost a family member from what I can only list as a diabetes error. Yeah, and whether that error was in action in understanding and technology in what they were taught in what they took in insurance coverage of what they needed, in the Postal Service, in parenting.

Scott Benner 1:02:19
So when you get back to the beginning, you're gonna you're gonna bump up on a, on an episode, I think just called Matthew haulover. Oh, so

Kathleen C. Moltz MD, FAAP 1:02:29
so you forget that I went back to the beginning that I'm listening. From beginning forward and backward. I'm

Scott Benner 1:02:36
doing both. So my experience speaking with Lindell about her son who passed away in college. I took I can't remember any of that conversation except the part where she said that she would have rather her son have 21 exceptional years, over having 40 scared years. And that really, really stuck with me. And so I have, I'm money where my mouth is because my daughter could pass away. Like there's nothing to say that she couldn't. And I just kind of, I believe right now, in this moment, that if that were to happen, I think I could say what Lindell said, at that moment. I believe that academically right now, I also want to point out that one of the things doctors lack through no fault of their own, but I get to have, and it's an amazing benefit of the podcast, is that I get to, and the more the more popular the podcast gets, the more of the world that it covers, the more far reaching it becomes, and the different stories I get to have. So you guys get to listen to them, which is one experience. I listen to podcasts that I don't produce, and it's one experience. But having a conversation like this with a person, every time I do it, the one we're having now, but when I had yesterday, the one I'm gonna have on Tuesday, they changed me and informed me differently every time. And then, and this is gonna sound really high minded, please don't take it that way, then I become a conduit for that information. So then it's my privilege to stay here and have these conversations, and then say something off the top of my head. That just occurs to me, but it doesn't just occur. To me, it comes from this amalgam of conversations that I've had. And so there's something about having like a sphere of information that can listen to you, and then spit back out the best guess it has based on everything that it's heard, that I think is really valuable. So that makes sense.

Kathleen C. Moltz MD, FAAP 1:04:41
It does, does and to some extent, like as a physician we hear over years 1000s of stories, and as a pediatric endocrinologist, I have the privilege of helping and watching kids grow up And getting information from them and learning and then kind of letting it stew and transforming it into something that someone else can use is the same thing I feel like I get from listening to your podcast and I feel like other medical professionals, if they listen can get from listening to your podcast is very cool.

Scott Benner 1:05:25
I will tell you to you're at a disadvantage because I imagine that the stories you hear are probably fairly similar from person to person, and never the good parts. It's probably always Moreover, the struggles what's not working. And then once in a while, like, Hey, thank you get this happen, like, Look, I'm gonna tell you right now one of the best memories of my life is the first time I got Arden's a one seater really move after we got to Dexcom. And I left the room. And we were going out to fill out paperwork at the at the end, and I happened to look up and see the the nurse practitioner there. And she looked me in the face. And we did not have the agency yet, because we actually got through the whole visit without it coming out of the machine. And she goes, Oh, I was just coming back to see you. And she told me Arden say one se and then I broke down uncontrollably sobbing in front of her. And then this tiny little woman hugged me. And she's like, you're doing a good job. And I was like, thank you, like an all I could think was like, I've been trying for years for this to happen. Like, like, I really didn't think I could do this. I never, I never thought this was gonna happen. I always thought I was killing my daughter, like constantly felt like that 24 hours a day, seven days a week, in the middle of the night, I opened my eyes. And my first thought was, is Arden alive. I'd put her in her bed. And the last thing I think when I left the room was please don't die tonight. Like Like, that's just like, my whole life was like that. And no matter how hard I worked, or no matter what I tried, or how much I cared he once he just sat in the eights. I didn't know what I was doing. I had no idea. And I go to what I think you would consider to be a really good Children's Hospital on the east coast. Yes, right. I know which one yeah. And it didn't matter. It just didn't matter. I didn't have the tools, I didn't have the understanding. I'm a pretty bright person. And I couldn't figure it out. And I could see my whole life was going to be like this. And then I could see her whole life was going to be terrible. And I have the perspective of my friend Mike having type one when we were in high school. And Mike in the last two years has passed away. And I can tell you right now, Mike passed away because he didn't understand what he was doing. And when technology got better, he did not move along with it. So I'm never going to make that mistake. I think that as much as what we do right now for Arden's care probably will work better than any retail available algorithm that's going to be available in the future coming up right now that most people living with diabetes will benefit significantly from being on one of those algorithms. And it's so exciting to me, that that exists in such a short time, right? Like, what it's 2021, the Omnipod five is gonna come out soon. That thing's gonna learn and make changes, right? That's insane. In 1988, my buddy was diagnosed with diabetes, he couldn't even make it to see that technology. That's how different the care is from the late 80s. Till right now, that's mind numbing. Everyone needs to know that who has type one, everyone who uses insulin needs to know that. And I'm going to take the last 10 years of my professional life trying to make sure people understand it. If sometimes I talk in a way that makes a doctor uncomfortable, you have to see the bigger picture of what it is I'm trying to accomplish. And you being here is such a fulfilling thing for me. And a note that I got the other day that said someone just changed their major because they want to be a CD now because of the podcast. Like I this is gonna sound crazy, because I'm too direct. Like if I spoke more flour early around this, it would probably sound better. But I'm going to change the next generation of how people talk about diabetes. Like that's my goal. I want my if my daughter has a kid with type one, she better never go to a doctor's appointment, where they're like, Oh, you got a seven, five, you're doing great. Get out of there because somebody ever I'm gonna come back from the dead and find somebody if they say that to my grandchild one day. Okay, so I just, I want to make a bigger impact. And I want there to be people who talk about it this way. And I think if I just keep talking about it, then other people will learn how to talk about it like this too. My goal is that one day I meet people who are so much better If this than I am, who tell me Hey, I figured this out through your podcast, that that's that's my very overarching high minded idea about diabetes. So I don't even remember what we were talking about, but

Kathleen C. Moltz MD, FAAP 1:10:11
it's okay. Because I have a couple responses, please. And the first one is I think your legacy is changing the way people talk and think about diabetes. Hope so not that you have to end that now.

Scott Benner 1:10:28
Yeah, don't make me cry either. It's sad.

Kathleen C. Moltz MD, FAAP 1:10:30
No. Okay, but I'm gonna now. So the other thing I really feel like I need to say to you, is that even though you spent all of those years every single day, thinking, am I killing Arden? Is she gonna wake up? You every day saved her life. And you learned from what you did. And you were flexible enough to take advantage of technology, even when it wasn't what was recommended by your professionals, like the Omni pod. And if people can start from a place of, I'm saving my kid's life, and I have to get better at doing that. How much easier would it be to accept your own faults and your own advantage advances? You saved Arden's life all those years, and now you know how to do it better. And now you're sharing it with other people. But you didn't fail her? You didn't fail this child. You succeeded. You saved her.

Scott Benner 1:11:49
I think, um, um, I don't know how to answer that. But I think that we all if this podcast means anything to anybody listening, like you really have to. Sound sounds crazy, but you have to be grateful for how poorly Mike's life went with diabetes. Because I have to tell you that it was such a part of our existence. And he was absolutely my best friend in the whole world, that when Arden was diagnosed with type one, it took me weeks to realize that Mike had Type One Diabetes to it didn't even occur to me. His care was so in the background, and almost an afterthought, that when my daughter was diagnosed with Type One Diabetes, my first thought wasn't my best friend has type one diabetes. I didn't think of him that way. And that care model? It it led to it. I mean, that led to his demise. It really did. Yeah, and, and so I can't sit here and know that there are still people giving that advice. And it happens.

Kathleen C. Moltz MD, FAAP 1:13:04
It does. It does. And that's wrong. Right. I have to not the same but similar to Mike's that I think about when I was in kindergarten, there was a little boy, I still remember his name, if you're out there. And I remember you, um, and he was diagnosed with diabetes between kindergarten and first grade. And I remember I remember, as a six year old as a five year old thinking, what is diabetes? What does that mean? And I can't remember ever seeing him do anything for his diabetes. He disappeared from the school I went to after first grade, I have no idea what became of him. But I always wondered like, how was his life. One of the first patients I took care of, in my first job out of fellowship is another person who was probably a victim of what we didn't know and what didn't change. I picked her up as a young adult patient, because in that practice, I also saw young adults, and she already had retinopathy and neuropathy in her early 20s. And she passed away. I believe, a month before her nephew was diagnosed with Type One Diabetes. And her brother brought his son to see me and said I don't ever want what my siddhart my sister went through to happen to my son, you have to we have to do better. You have to do better. Tell me what to do.

Scott Benner 1:14:54
Well, I'm going to tell you something that I think is going to make you kind of shocked and happy. You said you started listening to podcasts a handful of months ago. Yeah. Okay. Do you believe that the way you're doing your job is better than it was prior to that? Different more enthused, I

Kathleen C. Moltz MD, FAAP 1:15:15
think that's a, that's a that's a correct statement, I feel better about how I'm doing my job. And I think I'm doing my job better.

Scott Benner 1:15:22
So do you know I have a website called juicebox, Doc's calm, where listeners, I've heard of it. They're sending their doctors that they think do amazing jobs for them. And three days ago, someone sent you in. So you're up there now to think did a gentleman sent you in and the stuff he said about you was really very wonderful. So I think you'd be thrilled. Okay, now you're gonna make now you're gonna make me cry? Well, I've been saving that for the whole hour. You mean, me? Okay. But you know what, thank you. Thank you for telling me No, but what made me think to say it just now was that you said hello to the kid in from kindergarten. And you said, if you're listening, and I thought he might be listening. Because that's crazy to me, like, I get an email and it says, Hey, this is an entry for Juicebox Podcast, a really like thoughtful thing about why the doctor should be in here. And then I looked down it and it was you. And I thought, that's so full circle crazy. It's it's like there's a story, that from the Facebook page, a couple weeks ago, a woman walks into a Costco with a Juicebox Podcast t shirt on. And she intersects a woman who points at her shirt and goes, I listened to the Juicebox Podcast, and they have a quick back and forth, and they go on their way. The woman with the shirt comes to the Facebook group and says, You'll never believe what happened today. I was at Costco, and blah, blah, blah, blah, blah. And in a half an hour, someone else comes in and goes, that was me. And I'm like, Oh, I'm building an empire. Like, that's all like, I know, I thought it was such a lovely thing. But but the Joking aside of that, I thought, I started a podcast about type one diabetes, not even about diabetes. And a lady just walked into a Costco in New York, and walked past another listener of the show. And I was fascinated by that, just that piece of it. But then that they both are in that other space. I was like, wow, maybe this is the model that helps people. Like because of like this distribution. I mean, the joking aside, and it is cool that I have a podcast that people recognize and etc. And I'm not saying that like, but that the distribution works that well, was very heartwarming to me. I thought, I think I'm onto something like I think this works, whatever this is right now works. So if you're a doctor listening, and you've listened to something and thought that guy's bashing me, I want you to please just know that I have never sat down in front of this microphone, and consciously started talking about anything. I've never once thought today I'm going to talk about this or that. I've never taken a note the people I speak to, I don't even let them talk to me before we do it. So we start Truth Truth. Yes. Okay. So I don't like that actually, everyone. And sometimes I leave it in because it fits. But mostly what happens is people get on I say, Hello, we get the tech set up. And I tell them in a moment, introduce yourself any way you want to be known. And then I'll ask you a question. And then in an hour, we'll be done talking. And that is as much consideration that I've given any of these recordings so far. So because I like I like what comes out of this, like this thing, whatever this is we're doing like you and I are making an amazing episode of this podcast. I understand that on one level. But personally, we're just having a really great conversation. And then on another level, we're helping people with diabetes. And on another level, we're helping physicians that help people with diabetes, like there's so much happening within these minutes. And I'm not aware of them in totality, while it's happening, and just I'm just answering the questions the best way I can. And I think there's something to be said for that for people who don't

try to make everything seem so professional and clean that it doesn't work for most people. So I don't know where I got that from. But anyway, it's cool that somebody bought a T shirt even that freaks me out caffeine that somebody was like, like I being serious to to see how growth works. I have never in my life thought to myself, I'm gonna sell t shirts. I don't want to sell t shirts. I don't like that. It makes my life more complicated. It doesn't make me very much money. You know, but people said, When enough people come to you and say I want a T shirt. You think this isn't about shirts. Make them a T shirt. When very recently, it's gonna sound weird the wording, but I had to put up a buy me a coffee campaign, because that's how many people said to me, I want to give you a couple of dollars, and there's no way for me to do it. And I just thought like, That can't be right. Like when the first time that gets said to you, you think, Oh, this is an outlier. It's a crazy person. That's so nice. I'll thank them. And, but when the 50th person tells you, I'd like to give you three bucks a month, because it'll make me feel better. It's an odd feeling. But you have to it's sort of the same thing with a T shirt, you think this is something they really want to do. I know that I'm going to end up with $3 when it's over. But I think I have to let them do this. I don't know if that makes sense or not.

Kathleen C. Moltz MD, FAAP 1:20:51
It makes sense. And you do have to let them do this. You are providing something. You're doing it for free. People have ads, it's not free. Well, okay, yeah. But for the people, it's free.

Scott Benner 1:21:07
I understand,

Kathleen C. Moltz MD, FAAP 1:21:07
okay, there's no fight, you've said it, and I will repeat it. There's no firewall. There's no content hidden that you have to put in your, you know, password to get to. This is just all out there. It's available. It's waiting for people, for doctors, for nurse practitioners, for anybody who wants to have another way of thinking about this. Have your perspective and all of the people that you've talked to. And if somebody wants to give back to you for the hat, accepting the gift honors the giver,

Scott Benner 1:21:46
that's I, it took me a while to get to that because it just felt wrong to me the whole time. There's one person whose name I won't say who Badger's me more than anyone else. And I finally was like, Okay, I'll do this, no one's gonna do this. She's like, Yes, they are. And I'm like, No, they're not like I, it's not necessary. I do make money from the ads. It's not about money. But then I started having this other thought, as crazy as it sounds, the more I could make from this, the more I could do with it as well. And I'm not telling you, I wouldn't pay for my cable bill or send my kids to college or anything like that with any of the money people would send. But there is like bigger ideas, like I have stuff going now, that takes money I'll tell you about afterwards that I think you'll be excited about. But there's no doubt that more money would help that. Like there's no no doubt that it would be nice if I could pay somebody to, you know, prep the shows for me, because we're up to, I don't know where the listeners are up to like 498, maybe. But I already have the next seven prepped and up, I've already recorded the next 60 or so they all need to be edited, put together, like there's a lot that goes into like an hour of listening for you is probably eight or nine hours of my life, I would guess. And so at least at least it's a lot and, and this is 100% a full time job. Now I work on the podcast six days a week now. And there are times where I have to stop myself, and I have to walk away from it. And I'm gonna get a big fat. But if I keep sitting here, so I got to get up and move around a little more, although I have a fairly flat, but I don't think I could make it. The fat will just go somewhere else probably Catholic. But I don't think it's an item, I think I'd end up being a big balloon with a flat but if that happened to me, but but but joking aside, I do see the value of it. And and I don't in any way disregard people's ideas that they would like to do that I understand it. I am a person who not on purpose. And not by design receives about 10 emails a day that at some point, say you saved my life. And that's heavy and it's it's hard to absorb sometimes, you know? So

Kathleen C. Moltz MD, FAAP 1:24:00
it wasn't what you set out to do you set out to share ideas. You have Episode 497 posted. And somehow my pod player says there's 507 episodes that I've listened to 126 of them. Yeah,

Scott Benner 1:24:15
there's probably some extra ones in there before I knew how to really number them and do all that stuff, probably.

Kathleen C. Moltz MD, FAAP 1:24:20
But 497 is what's up right now. That's what I'm listening to before I go back to 2015. Yeah, we're actually interesting. It's interesting to hear your different style to just for reference, like I would say to people who are hearing this or who have been told to listen to juicebox. Scott is right. You got to listen to the pro tips. You've got to listen to the defining diabetes, and then listen to whatever strikes your fancy. Yeah, do what in whatever order you want, because there isn't a perfect order for anything. They're all good episodes and they're All, providing different information,

Scott Benner 1:25:03
I have never put up an episode and thought that is crap. But I need something today. So I'm putting this up, I've never had that feeling there, there's, there's some, like, I know, there's so much if you're listening, I know there are so many episodes and it feels overwhelming and promotive, you're not gonna be able to listen to them all. And I get all that. But I think that to be a good content provider, you have to provide content. And if I put up one episode a month, or one episode a week, I would never get to all the stuff that I've recorded. So I have to do exactly what Kathleen just said, I have to put it out there, and you have to pick through it, and nobody can hold your hand you're gonna have to fit. And I know I don't help you. I know that some of the I know some of the titles don't have anything to do with anything. And I mean, there's one up now called monkey's eyebrow. So good luck figuring out what that's about. And but I can tell you this about it. I couldn't give you a synopsis of that episode right now to save my life. But what I know about it is I spoke to an adult female type one who moved around the country a lot, has a really heavy job is super smart, talked about what it's like to live with diabetes, had a really funny father with a lot of great stories. And I had a wonderful time talking to her. Will you take something different away from that? That I will probably, but I can't tell you what that's going to be I have no idea. You know, it's a very strange art form. Because I don't think it's the same thing to other people. I also think, am I getting better at it as I go? Yes, yes, absolutely. Makes sense. But I don't know like talking to you right now. I can't academically tell you. I speak more slowly. I listen better. I don't feel as forced to be funny. Like that. I know, I've learned over time. So I definitely have gotten better at it. But then that just makes me feel like I'm such a competitive person with myself. That that sentence just makes me wonder like how much better I can be at it next year. It doesn't make me feel happy about this space. It's like the downloads. I get so many downloads every day. Every time I see the number, I just think about how to make it into more downloads. I never think, Wow, a month and a half ago, it was 30% less than this. I never think that I'm always like, well, if we hit this, I wonder what we could do here. And yes, that's about distribution. Because the more people that listen to show, the more likely somebody is to want to find out more about a free 30 day supply the Omni pod dash, which makes people continue to buy ads, but and I do take money. Like Don't get me wrong, but what it really gives me a side of the money is the ability to keep making the podcast and to keep putting effort into it the way it deserves. And the way everybody listening deserves it should this should not be a fly by night thing. Like I might sound unprepared. But I actually have a kind of a fabric woven concept of what this all should be like, as by mistake is this all seems it's incredibly on purpose. But I try to hide that because I don't want you to feel like you're being talked to, if that makes sense. Talk that I guess I mean, anyway, now you know something about making a podcast? Never gonna do it. Yeah. Yeah. And no one else should either, by the way, dammit. I don't need the competition. Just shut up and listen to mine. Dammit. You're here. Yeah. Thank you, Kathleen, is there anything that we have not spoken about that you wanted to talk about?

Kathleen C. Moltz MD, FAAP 1:28:32
I think we covered almost all of it. Okay, I think the only thing I can say is

I would really encourage people to tell their physicians, nurse practitioners, diabetes educators, what they like about the podcast, what they've learned from the podcast, so that it's not seen by some medical people, as this guy talking. Because there's so much value that I've I mean, just me I feel like I've received so much value from listening. And I feel like there's so many other people that can receive that value. Also, if they have time to listen,

Scott Benner 1:29:20
can I ask a question based on I'm assuming, you know, a lot of doctors. What would it feel like if I'm a doctor, and the best time doing lead somebody to a 8.1 a one c? And then they come in three months later, with a five nine and I start to freak out and they stop and go No, no, don't worry. I'm not having frequent or extended lows. And I'm not spiking Look, look at my data. And when the doctor says Where did you learn that? And they say, from a podcast. Do you think that's hard for a doctor to hear? What do you think they're just happy for you?

Kathleen C. Moltz MD, FAAP 1:30:00
I think the number one thing is happy, right? I actually don't think most doctors freak out at a 5.9 anymore if we have CGM data to look at. And I, truly I think truly, it doesn't hurt that somebody got information somewhere that helped them. In the end, every pediatric endocrinologist wants every kid with diabetes, to have a long, healthy, fulfilling childhood, and a long, healthy, fulfilling life.

Scott Benner 1:30:42
I'm lazy,

Kathleen C. Moltz MD, FAAP 1:30:42
we want to be we want to be extraneous. We want to be like, how can I add value to this person's life? Because they're already doing great.

Scott Benner 1:30:50
That's what I was thinking, yeah, that's what I want. I'm lazy. I would, I would tell everybody out the podcast and be like, Oh, my God, I'm gonna look like a genius. If everybody comes back with a nine, nothing to be amazing. I see if I'm the doctor. I'm like, I'll just keep getting the checks. I'll probably play golf a little bit. Maybe I'll learn to fly a plane. Maybe then like, I'll just be like, all mine have five nines. I don't know what your problem is. And I'm glad to hear that you think that's the case? Can I ask you? Your thoughts on why? adult endos don't seem to be like, Why do people say the best care I ever got was from my pediatric endo. What's the disconnect?

Kathleen C. Moltz MD, FAAP 1:31:28
I think there's a few things. So and again, this is my opinion, it doesn't reflect that everybody I've currently or in the past worked with.

Scott Benner 1:31:37
Um, but bill, now I'm just getting good. Excuse don't die before we're done, I need this.

Kathleen C. Moltz MD, FAAP 1:31:44
I have this, I have this thing where if I could laugh, I sometimes cough, so I can't make me laugh anymore. Um, I think so much of training for adult endocrinology is type two diabetes, which doesn't mean, they shouldn't also be aiming for a 5.9. But there's a lot of emphasis placed on the comorbidities and 40% of people who already have nephropathy, when they're diagnosed with type two diabetes, and the heart disease and the feeble little old lady who can fall and break her hip and we can't let her have a low blood sugar. I think it's difficult for a lot of adult endocrinologists to individualize what they're telling to fit the person that they're actually seeing in front of them. And not the fear that they've experienced over and over again, when something bad happens.

Scott Benner 1:32:45
What does it say to you that the most well controlled, I know people don't like that word, but it paints a picture, person with Type One Diabetes that I meet, all see their doctors as the nice people with the prescription pads, and the a one c test. What does that does that I

Kathleen C. Moltz MD, FAAP 1:33:03
think they should see them as the nice people with the prescriptions and a one sees, and they get to talk about, you know, the kids play or what the dog is doing? Or, Hey, did you know that there's this new product? You know, you're in Europe, and I watching to see when it gets to the United States that I think is really good. I hope you like there should be more that we can offer, then correcting or incorrectly correcting things that somebody is doing right?

Scott Benner 1:33:34
What does it feel like when you take someone's pump and make a change? And you I because you have to know I'm inferring this on you. But you have to know that this is a crapshoot that you're about to involve yourself in right. I'm going to turn a couple of dials, push a couple of buttons and hope this thing gets better. I'll see them again in three months. Does that feel bad?

Kathleen C. Moltz MD, FAAP 1:33:53
So I don't, in my practice, see them again in three months? I say look, I kind of reviewing the data, you told me what's happening here. What do you think about making this change? Right? I could do this, I could do this. What are you more comfortable with? Is there something else that you would like to try it? They put it in the pump. I teach kids to program their pumps with their adults watching. And then I say, Look, do you have a computer at home that you can upload two in three days a week? If you do, I would be happy to look at this. Even once a week. I probably can't look at it as often as Scott would look at his own daughters. But I'd be happy to look at this once a week if you want to shoot me an email and say hey, we upload it. Can you go look? So in my practice, it's not three months, it's never like unless somebody on their end doesn't want to think about it for Three months. That's not what I offer.

Scott Benner 1:35:01
Well, that's excellent. I bet it's but it's a common thing that I've described, right?

Kathleen C. Moltz MD, FAAP 1:35:06
Oh, absolutely, absolutely. And that is a crapshoot. And in the end, like, there are things that I don't get finished in my job, then there are things I don't get to do with my family. Because I've got stuff I've got to take care of. If they ask you, if a family wants to reach out and say, Hey, can you look at this, right? I'm never going to tell them no. And it doesn't matter whether I can build for it or not. Like that's just that's what I'm here for.

Scott Benner 1:35:36
If I picked you up and dropped you in a setting where there was a person with uncontrolled blood sugar's 250, managed is that the words we use,

Kathleen C. Moltz MD, FAAP 1:35:45
manage, we don't say controlled, you can't control diabetes, it's a wild animal. You can tie it out, I

Scott Benner 1:35:51
do a pretty good job over here caffeine,

Kathleen C. Moltz MD, FAAP 1:35:53
you can tie it up you test insulin, he you can tie it up, okay? I can't control it. Because you know, something is going to change, I'm

Scott Benner 1:36:00
gonna give you your my respect on your feelings around the world. But if I, okay, a person who's having that experience, I drop you in their home, give you full control? How long until you've got their blood sugar low and stable?

Kathleen C. Moltz MD, FAAP 1:36:16
I see. You're asking me a question that I've never experienced. And I've thought about

Scott Benner 1:36:21
you should try it. kidnap one of those kids just take them home.

Kathleen C. Moltz MD, FAAP 1:36:27
I have people asking me to take their kids home, right? Um, my family is not at that point at the moment. Um, how long would it take me? It was a it would take me longer than you. Because you've been doing this for a long time with people remotely. I think being able to see what's happening, being able to make adjustments continuously. I think I would have things in a healthy, stable place. I'm going to give myself five days, yeah. So five to seven days,

Scott Benner 1:37:12
I'm gonna make a suggestion to you. And I don't know if this is possible, you should do it. You should pick a person and do it because the experience will be invaluable to you. It puts you in the mindset of Do you remember before people could remotely take control of your computer, you'd have to call them on the phone to find out like my computer is broken. Here's how I need you to fix it for me. On the other side of that phone call was a person who could imagine your computer without looking at it. It's a great, great skill to have around diabetes. It's very cool to be able to know the parts, the variables that you can ignore for the moment to make the bigger changes. Right. Like I this morning. The woman I spoke to this morning, her kid had a waffle. And I sent her a text and I said you need to Bolus more this is about to go wrong. No, no, no, no, no, he's doing an activity right now. It's going to be fine. Well, now the kids blood sugar's to 40. And guess who was right? You were right. You were right. And but but she just doesn't have the experience to know she will one day, but I could see it across the country. Just looking at the Dexcom graph. And knowing this, the kid got up at this time got this much insulin ate this. And then I can look at the time, I can start inferring from the graph. And I'm like, No, no, the insulin is gone. The food still there. This is about to be a problem. Do it now. That came from talking to all these people. And and I can I use it for my daughter all the time. Like last night Arden's blood sugar has been trying to go up at like 11 o'clock the last few nights. I don't know why. I don't even care why. I just know that's happening. So around 1030 I looked at her blood sugar last night, and I start saying things like, let's, you know, we basically she's looping we jacked up her intensity, like 50% lowered the targets a little bit. So it would be more aggressive, put some insulin and like all that stuff, blood sugar went to like 145 and came back down again. If that doesn't happen tonight, cool. If it happens one more night, whatever. Like that flexibility comes from knowing how to react in the moment. Because while it is true for most people, and I'm interested in what you think about this, like when I tell people that what you do now with insulin is for later, but it's more appropriate to think about it as what you've done in the past with insulin is for now. Do you understand what I mean when I say that?

Kathleen C. Moltz MD, FAAP 1:39:40
I do. I do. I think what I'm trying to teach residents or newly hired people about how do you figure out what to do with the pump. And somebody comes to me with a graph and says Look, they're having all these lows at this time I was going to change this Basal rate. I'm like now No, no, you have to go back a few hours, right? That isn't happening because of what's going on now that's happening because of what happened before

Scott Benner 1:40:07
his blood sugar goes up every night at 11 o'clock makes me think you're bad at dinner. That's the first thing. I think when it happened.

Kathleen C. Moltz MD, FAAP 1:40:13
No, it makes me ask the question, when was dinner? Okay, and how much did he have to eat between dinner and night time? And did he get bonuses for anything? Right snack time between dinner and

Scott Benner 1:40:23
latency. Now, you're 100%? Right. I would agree with you in spades in court. But what you just heard me say is the leap that I've learned to make from having been asked the question by so many different people, and that's where the shortcuts come in, to teach it to people. Because your, your questions are all right, in my opinion there. But if you said that, to me, as a person who's had a kid for diabetes for two years, I'd start going like, Oh, hold on a second. That's a lot. Right? Right. Where I were, what I'm saying is, dinner is getting messed up some way and you're drifting highlighter. Let's go back, make sure we're Pre-Bolus and dinner that we're using enough insulin for that we're thinking about fat and protein that might cause a rise two hours after you eat. Let's let's simplify like, I'm all about turning diabetes into t shirt slogans. Right? Because I think that's how they're actionable in the moment. Not that you're you're 100%. Right. But I think you and I just said the same thing. You use more words than I did.

Kathleen C. Moltz MD, FAAP 1:41:20
Well, I said, No, use more words. And I think I get one of the things I'm working on improving myself as I get lost in the Why did this happen? When it doesn't always matter? why it happened? It happened.

Scott Benner 1:41:32
It happened. Yeah. I never was like,

Kathleen C. Moltz MD, FAAP 1:41:36
that's part of that's part of what I've learned about myself. Yeah, is that I can get sidetracked wondering, why did this happen? And, like, in the end, good. Just got to take care of it.

Scott Benner 1:41:48
Do you have a type A personality? Um, my family would say so. Yeah. Well, they're probably right. There's times you need to listen to other people. That's one of them. I know, because you would never know. But so to me, that's one of the things that I've spoken about on the podcast for years. It's super important that I think that I can't infer to you in a moment. Because if I just say to you Don't worry about what happens. You're gonna mess everything up. That's a vibe. Not an idea. Right, that's the like, Arden's been getting hired. 11 o'clock, I don't really care why it's happening. It's gonna stop happening soon. I just need to get ahead of it. Like, I'm all about staying ahead of problems. It's so interesting to listen to somebody, with your perspective, talk about all this.

Kathleen C. Moltz MD, FAAP 1:42:33
So like, one of the things that frustrates me that I'm trying to wrap my head around is the attitude I get from a lot of patients. Oh, your blood sugar's were high on last week, but that's because they had a cold, so I didn't change anything. And it drives me crazy.

Unknown Speaker 1:42:50
I'm like, No, no,

Kathleen C. Moltz MD, FAAP 1:42:51
there's nothing wrong, you should have changed something, the cold is gonna go away faster. If the blood sugars are high, the white blood cells are going to work better. If the blood sugars are Ty could have always changed it back.

Scott Benner 1:43:05
I mean, what you just said made me think that people would probably really enjoy hearing the five minutes of Jenny and I talked before we start recording. Because it because the way I see my job, and I guess this is my job now it's self appointed. But yes, it's my No, it's your job, right? is that there are confusing things that people think that that mess them up, and they don't even know it. And being cognizant of that, and being able to stand back and see it happen, it's super easy to feel like that like, like, how could you ask this question like, but the truth is, it's everybody's first day having this thought somewhere, right? And what builds a really strong community is never, like, you can think that stuff. And I think it's sometimes too, but it's it's never saying it out loud. So that the next person feels free to ask that question. Again. It's, it's the idea of there's never a dumb question. Right? Exactly. And you have to see how cyclical The space is. I hope I use that word, right? Where people I really should have went to a couple of those days in high school, probably where new people come in there. It's very interesting. In my, in my current day, there are any number of 1000s of people who interact with me, who all feel like I'm a very good friend of them. And I'm aware of their little avatars like I see them. They make sense to me, but those people are constantly getting the information they need and dropping off, which to me seems like a huge success. I don't want you living your life in a Facebook group. Right, right. I don't want you living your life worried about what happens if my daughter's blood sugar goes up at 11 o'clock at night. I just want you to be in this kind of like loose mode, where something happens. You recognize it, you jump all over it. It stops being a problem. You move on you go to the next thing I wish For everybody, and I have not figured out a way to teach it to them yet. But I wish for everybody that you could look at a graph on a Dexcom and have the thoughts that I have when I look at them, because I just see them immediately as basil issues Pre-Bolus Singh issues, insulin to carb ratio issues. And it's just they're incredibly obvious to me. But I don't know how to teach that to you, other than to say, you should talk about diabetes every day, until it starts making sense. And of course, I

Kathleen C. Moltz MD, FAAP 1:45:27
would just to back up, I would never say, why don't you change things to a patient? Like, that's a teachable moment? I'm glad you told me, right. Um, I. So in all of your non existent free time, maybe if the world provides you with more assistance, it would be lovely to offer insight into inside the mind of Scott voiceovers as you look at things. Yeah,

Scott Benner 1:46:01
I wait, definitely. It's on the left people to see it's on the list. Teaching graph reading is definitely on the list. It really is, I let me finish by telling you this and asking you your opinion. So it's possible and I have my fingers crossed, that I'm about to go to a hospital, and sit down with the staff of an endocrine chronology department and explain to them how I talked to people about diabetes, and what I think they should be saying to them. So I'm gonna sign you up, oh, I would definitely do that. I'm dying to do that. It almost happened last year at a really big institution. And then that fell apart. And now it's happening again, it's a smaller hospital, but it's in a big healthcare system, which is exciting for me, because I think, I think that I could spend two hours talking to people, and then they could go do a better job talking to people. And is there anything obvious about the set the setting that I'll walk into? That knowing me from listening to the podcast, I will be ignorant of? And how do I not make enemies walking in the door? Is my question, let me think for a sec, I want everybody to be open minded.

Kathleen C. Moltz MD, FAAP 1:47:18
I think the first thing you should be aware of is probably that a number of the people working in the environment are going to be people with diabetes. Okay. And they may or may not enjoy following your podcast. Yeah,

Scott Benner 1:47:37
it's hard to hear from somebody who doesn't have diabetes, it doesn't have a degree, right. Um, I hear that.

Kathleen C. Moltz MD, FAAP 1:47:43
But then the other thing I think is, I would emphasize that this is a process that what you want to explain to people, and what you want to share with them, is a process that took you years to figure out, you've kind of distilled it down to this little bit. And that no one is going to walk out the door with a certificate of excellence in a better diabetes. Like, that's just not going to happen. But that if people practice using some of the ideas and tools that you give, that better is better. Yeah. And that things will be better for a lot of people.

Scott Benner 1:48:30
Okay, I would definitely come out and do it at your hospital, I would enjoy the first five minutes where they threw rotten fruit and vegetables that make the tomato maybe in the side of the head, but as long as it's soft, I'd be fine. No, I listen, I'm not gonna just put a banana under your foot. I'm not gonna front as the kids would say, this is one of my end of life goals is to do this. So I've been on a plane since COVID. And I'm not afraid. So give me a call.

Kathleen C. Moltz MD, FAAP 1:48:58
I one of the things I wanted to ask you and I actually put it on the after the broadcast was, do you have any plans for teaching the teachers for teaching the physician to the professionals, I really thought

Scott Benner 1:49:09
it was going to happen at a huge institution last year, and then my conduit to the idea switched jobs. And I now have a new conduit, which is just a listener who wrote me a nice note and said something to the effect of If I hear someone say 15 carbs 15 minutes one more time, I'm gonna go off in this place. And so and then we started talking about it and I made the offer and it actually looks like it's moving forward. So I have my fingers crossed for that. I think it's well, let's talk offline. Yeah, of course. I think it's amazing idea. I have to let me wrap up by saying this. You do not come off like you know how brave this was. So let me tell you that I thought this was really astounding if you to do and I appreciate it very much. I think it will mean more coming from a doctor to other doctors that it will ever mean coming from me. And that you were open enough to hear something that made you think differently and feel poorly first. And that you stuck with it and got to it again is really astonishing. You must be an incredible person privately as well as professionally. And that's not for agreeing with me. That's for being open minded. Oh, it's a little bit for agree for agreeing with me. There's other things that are great about.

Kathleen C. Moltz MD, FAAP 1:50:28
Thank you. Thank you very much. I don't I guess I don't see it this brave. I'm not I'm not a particularly brave person. I'm rather risk averse.

Scott Benner 1:50:35
But don't many people are gonna hear this, maybe you'll start feeling more brave after that.

Kathleen C. Moltz MD, FAAP 1:50:40
No, I don't want to think about that. Okay, I'm just talking to you. I'm sitting in my like home office, and you're sitting in your home office, and we're having a conversation and I need to remember that's part

Scott Benner 1:50:50
of my superpower. It feels very personal. This conversation we're having that everyone's gonna listen to you later. Excellent.

Kathleen C. Moltz MD, FAAP 1:50:57
But I have to say thank you, because having the opportunity to chat with you is is really meant a lot to me too. And I would be ecstatic to like, circle back with you at some point

Scott Benner 1:51:08
I talked I told you before we recorded and I mean, it right now that this is the most excited, I've been to record the podcast in like a year and a half. So I I think that the far reaching implications of what you share today are incredibly important for people living with diabetes, people who are helping people living with diabetes, and people who may get diabetes in the future. So I think this is really cool. Thank you very much. Thank you. Appreciate it. We have to have Hold on. Where's my little button that I need?

Unknown Speaker 1:51:42
participants?

Scott Benner 1:51:46
Jessica, come back on. I'm still recording. Yes, I'm unmuted now. So for everybody listening the PR person at the hospital that Kathleen works that has been listening the whole time. And I am dying. You're being recorded. Are you okay with that? I'm fine with that. Yeah, how they do give a list of notes.

Unknown Speaker 1:52:06
I don't have a list of notes per se. But I think this is great. I have a lot of respect for Dr. motes. I've heard from other patients. And she when she told me about the podcast, I listened to several of your episodes and thought they were real. And I wish this kind of access existed for other diseases, other conditions that were patients could access in this way. I think it's really important. I appreciate both of your advocacy.

Scott Benner 1:52:38
That was so professional. Jessica, I was hoping you would I am professional like that. Be like buddy, 18 minutes and 17 seconds, we're gonna have to talk about what was said here, but uh,

Unknown Speaker 1:52:49
no, all right, really, I just like to listen in to kind of pull out you know, we're gonna want to help share this and get the word out to more people too.

Scott Benner 1:52:58
So, Jessica, I have one last question. And then I'm gonna I'm gonna stop the recording and we can keep talking if you want to after that, but I'm okay with this work as a live event. Yes, okay, that was all I had. I'm gonna stop the recording now so you can start cursing and saying your weird stuff just right. That's it. That's what I'm gonna do. I know dirty you get.

Well, I hope you enjoyed that. I had a great time making that episode for you. And I really appreciate kathlyn coming on. Thank you also to Dexcom makers of the G six continuous glucose monitor. And of course, on the pod the bestest tube listen until in this this pump ever. By there's no words there at all. I love on the pod. It's a tubeless insulin pump. You might love it to find out on the pod.com Ford slash juicebox, bestest, and tubeless in this list is not a word, either. Those are words or not words I, I got confused. If you're a child listening, try to forget these last couple of moments. But if you're an adult, why don't you go see if you're eligible for a free 30 day trial of the Omni pod dash. And seriously, if you're an endocrinologist, and you want to come on the show, send me an email. Don't forget, we're putting out some extra episodes this week. So be subscribed in your podcast app so that you get a notification that lets you know they're coming out. There'll be episodes on days you're not expecting. They're going to be the diabetes variables episodes, in case you're wondering. But I just need to catch up a little bit over here. So help me out if you can, and subscribe in a podcast app. Also, thank you so much for listening. Tell a friend, share the show with someone it grows when you share. I know you hear me say this all the time, but it's incredibly important. And it's really true if you need anything. And the advertisers that I have on the show are up your alley are what you're looking for just using my link to check them out is a big deal to the show as well. Thank you so much for listening. Kathleen. Again, thank you so much for coming on. I look forward to talking with you again. Soon

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#504 Allergic to Insulin

Sacha Cardinal has type 1 diabetes and is allergic to insulin.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to Episode 504 of the Juicebox Podcast.

I'm squeezing an extra show in here this week and why now it's because Sasha is allergic to her insulin. Well, she was. And she, well, she is. But now there's a workaround. And it's fascinating. Sasha just graduated from high school, she lives in Canada, she is allergic to insulin, allergic means painful raised welts, and decreased efficacy. What follows is her story. And we'll find out together what she was able to do. It's a really interesting story. Please remember, while you're listening 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. I want to thank new members of by me, I don't even know how to say this. There's a buy me a coffee link where people can become members of the show. And part of becoming a member is getting a shout out on the show. So the first time you become a member, get your name, shout it out. So I've got a list for you here before we get started.

Thank you so much to Jeanette, Jennifer, Daniel, Grace, Julie blue, Leah, Melissa, Larissa, Alison, Marilyn, Shannon, Sue, Nancy, and Jessica for becoming members and supporting the show. Like you are really amazing. Buy me a coffee calm forward slash juice box. And a sincere thank you to many of you who just bought me a couple of cups of coffee and didn't do it annually. But still, it's really amazing, but out to use some of your money to buy hard drives, hubs, and a few other computer based objects that I need computer based objects who says that anyway, thank you. Right. Before we get started, I'd like to remind you that if you go to T one d exchange.org, forward slash juicebox. And fill out the survey completely. The show benefits and so to you. As a matter of fact, I saw someone on Instagram today who became a T one D exchange supporter they went they filled out the survey the survey super simple, I'll tell you about it a little later. And they are in the middle of doing a trial for a CGM company testing their adhesives. It's kind of an interesting little thing that came from being part of the T one D exchange, you don't have to do stuff like that. The T one the exchange is happy to just have your, your brief questions to their to their short survey. By the way, you have to be a US citizen type one or US citizen caregiver of a type one. But anyway, other possibilities do pop up afterwards. It was so cool to see someone online doing something for everyone with Type One Diabetes. And when I kind of liked their posts, they said I'm here because of you and I thought oh, that's really cool. So T one d exchange.org. forward slash juicebox.

My name is Sacha Cardinal. Sacha How old are you? I'm eight in October. Wait, you're definitely not eight years old. So I didn't hear everything you said. I don't think how old are you? I'm 18. In October in October, you'll be 18 Are you still in high school? Ah, yeah. I just graduated in June. Congratulations. Thank you. Like last month? Sorry. Like last month you graduated? Yep. It's kind of exciting. I mean, is it exciting? Or is it just like, oh, now that's over? Yeah, more like oh, it's over. Are you Do you have plans for university? Yeah, I'm going to you Ottawa. Nice. Congratulations. You have a focus something you're thinking about studying. criminology definitely. criminology. Okay. Excellent. What made you interested in that? I really know. You're definitely doing it. But you're not sure why. Yeah, exactly. It sounds like my days plans. How old were you when you got diabetes? I was two years old. Oh, you have been rocking this for a while? Yeah. So you're

Unknown Speaker 4:40
18

Scott Benner 4:42
just about we'll call it anything. Your you've had diabetes, pretty much your entire life. Yeah, What do you remember about it from when you were little?

Sacha Cardinal 4:55
Not a lot. Mom was doing most of the work. When I was little, so I just remember having to give insulin when I was eating, and that's about it.

Scott Benner 5:06
No kidding. So it was sort of really part of your life, not something that you think of is this extra thing that happens? No, definitely not interesting. Okay. My daughter was also to and she was diagnosed, and she's going to be 17 in a couple of weeks. Oh, wow. So you guys, probably what were you 2005? Maybe when you were diagnosed? Ah, yeah. January genuine. rarey. 2000 602 1006. Yep. So my daughter was diagnosed in August that year. So you guys really have almost had diabetes the exact same amount of time? Yeah, like seven months. That's interesting. So. And Arden, my daughter, Arden has a very, I think, similar experience in that she doesn't. I don't think about diabetes. In the same way who somebody who maybe was diagnosed when they were a little older, and and remembers like a stretch of time not having it may describe it. So the entire time you were young, were you using? Would you start with needles and how did you start managing? Like, what was your mom using when you were a little?

Sacha Cardinal 6:18
Um, when I was when I first got diagnosed? I had the needles, but then when I was four, they gave me the insulin pump.

Scott Benner 6:28
Okay, so you had a pump since you were four years old? Yes. You know how old my daughter wasn't? She got a pump. Sorry. Do you know how old my daughter was when she got a pump? No, she was for a while. guys might be twinning the whole thing here. And we'll see as we go. So what pump were you using? When you were four? Had the Animus? And you're in Canada, correct? Yeah, yes. Okay. So your health system is a little?

What's the word I want? It's slower to make changes, maybe. Is that fair? Yeah, I think it would be fair to say, okay,

so you're using animist pump since you were four? And Gemini real issues, managing your diabetes? Was everything pretty normal?

Sacha Cardinal 7:21
everything's pretty normal except for the allergy. When do you have to insulin?

Scott Benner 7:27
Yeah. So is that the entire time? And since you're too, or is it something that just started to happen? No, it just started to happen. Like, what, a couple years ago? Okay. So maybe, I'd like to know about that. What was the first thing you noticed?

Sacha Cardinal 7:46
Um, well, it started, it wasn't really an allergic reaction. I just started to get really big bumps on my legs to begin with about almost five years ago. And then last year, in February, I got hospitalized in DK a. And that's when they realized that something bigger was happening than just like little reactions of resistance to insulin. And so in June of 2020, they did some tests and testing and everything. And that's when they realized I was allergic. I had I was like, reacting and everything. And then February this year, that's when they did the test to see if I was allergic to insulin.

Scott Benner 8:38
And they found out I was okay, go back to the bumps on your legs, like mosquito bites. Um, no. Bigger than that, like a big bruise, like a big bruise where they raised up. Yep. Do they hurt? Yeah. Okay, all over just your legs. Like anywhere, I would inject actually Oh, at injection sites. Gotcha. Okay. What kind of insulin are you using? Where are you using?

Sacha Cardinal 9:10
I was using the Nova rapid at the beginning, and then they change me to all kinds of insulin, but they would all do the same thing

Scott Benner 9:17
no matter what. Okay, so, just I'm gonna just talk to you for a second. I know you're young. So I don't want you to be upset. But when you realize that you're allergic to the only thing keeping you alive, what do you think about?

Sacha Cardinal 9:35
Um, well, the first thing that came to my head, like I already have diabetes, why do I have to have like an allergic reaction to it as well?

Scott Benner 9:45
Did you ever make the distinction in your head? Like, what happens if I can't use the insult anymore?

Sacha Cardinal 9:51
Yeah, it's definitely something we were all thinking about.

Scott Benner 9:55
Yeah, yeah. So but you felt like there was a way to deal with it.

Sacha Cardinal 10:01
Yes and No, at the beginning I did but then again, I wasn't sure anymore.

Scott Benner 10:07
Okay, so when it first happened, you thought this is just a problem, we'll fix it. Yeah, right. Okay. How long does it go on before you start worrying that? Maybe there's no fix? Um, a couple years, about three years. Wow. So when I realized that nothing was gonna happen, so for three years, you're just using insulin, and it's making these big welts on you? Yep. did that affect how you ate?

Sacha Cardinal 10:36
Um, it did in the beginning, but then after a while it did. Um, because the insulin wasn't being absorbed in my body. And so my always high but I didn't want to give myself insulin either since it was hurting after a while. So sometimes I would like skip meals or like, skip snacks to like, eat something that doesn't have high carbs or things like that.

Scott Benner 11:01
Okay, so, so not only was the the raised up welts happening, but you weren't getting the effectiveness of the insulin that you would expect. No, exactly. Did anyone ever tell you what the raised up bumps were? Um, it's inflammation in the fat tissues. Okay. All right. Well, this seems like scary. Like, I know you're young. So you're probably all like, it'll work out because that's what happens like something. Something goes wrong, and then we fix it. And that's life. But that's frightening. Like, were your parents like, freaked out? Like have they told you since then, like that? They were really worried or?

Sacha Cardinal 11:41
Yeah, my mom was stressed out that I know for sure. But I think which because firming really know how many people would be allergic to insulin like, in the world or anything. Like for me, it was just another problem that doctors knew about right? But then we actually realized that only three people in the world were reacting that like having this treat, like to insulin the way I did,

Scott Benner 12:09
yeah, it didn't matter which insulin It was. It just you have this reaction and really just three people like you're one of three people. Yep, Sachi. That's incredibly unlucky. That sucks. Yeah, wow. really does No kidding. I'm sorry. That's terrible. Hey, just for fun for a second. How does your mind know? She's right there. But how does your mom act when she's stressed out? Um, she's not herself. That's for sure. But, um, how can I say it? You mean? How can you say so? She won't get mad at you when you say it. Is that the question? Yes. Yeah. Um, she starts acting up, if that makes sense. That's how you talk about children when they get upset when they're tired. Yeah, exactly. Okay, that's fine. We won't tell her that part. You she's gonna listen, but it doesn't matter. We're just but I mean, my point was that it's stressful for everyone. Do you live in like a kind of like a standard families or dad? Do you have a dad and siblings?

Sacha Cardinal 13:13
Yeah, I do. Well, they're separated. But I do see my dad every week and then my mom and the other week. Okay. Do you

Scott Benner 13:19
have any other brothers or sisters? Or do you have any brothers sisters? Yeah, I actually have two brothers and one little sister. Do any of them have any autoimmune problems? Nope. Nothing? celiac? Nothing at all. thyroid? Nope. Does their hair grow weird and that's not an autoimmune thing. Nevermind. Okay, so Okay, so you really are like the one in a million here? Yeah. Okay, so. So what ends up being the fix for this. Um, so they actually inserted a dire port in my belly. Okay, in the domino cavity. Um, so that the insulin would go, would like be absorbed by my body, but not in the subcutaneous part of it, since that's where I was reacting. So that's so in the end. It's not the insulin. Well, it is you're allergic to the insulin, but it's in this subcutaneous system, like, that's where it's bothered. So if you get the insulin deeper than that in your body, it's fine. Yep. Wow. So so there's a I've been looking online since I knew you were gonna come on. So there's this like, Did you get to see it before they put it inside? You? Know what? Sorry. Did you get to see the diet board before they put it inside of you? I did. Did it freak you out? Yeah. How big is it?

Sacha Cardinal 14:58
Um, it's sex. Should not that big it's like the size of like, I can't even. I'm okay, you know, like that little button you have on your gene so you can type them up. Yeah. about that size. Yeah,

Scott Benner 15:17
it's like so a button size. I was hoping we're gonna pick a coin like a Canadian coin that had a funny name. That was my hope when you started describing the size of it. I don't think you have like a loonie, or is that England? What am I thinking of? Yeah, the loonie, but it's smaller than that. That's what I was hoping you were gonna say just so you know. Okay, so it's about the size of a button. And is it very thick? Or is it very thin? What is it?

Sacha Cardinal 15:44
Um, it's thick, since it has to go all the way to the abdominal abdominal cavity. And it also has to come out of my body. So I can like, put the little port on it so I can inject. Okay, so definitely tick, but nothing more.

Scott Benner 16:03
Gotcha. So this button is under your skin, but it has a port that comes through your skin. Yeah. Ah, and then how do you handle swimming, for instance?

Sacha Cardinal 16:18
Um, you do have to cover it for a little bit. But then after a while, you can just

Scott Benner 16:26
put the like reconnect when we're just like you want to take like a wine cork and stick it over top of it or? Um, yeah, well, we have what they call the ghetto. What's it called? I'm sorry.

Sacha Cardinal 16:42
together. It's just like, a clear cover that you put on top. Oh, teraterm. Yeah, exactly.

Scott Benner 16:50
Are you from Canada originally? Are you from Europe? Canada. Okay. I love your accent. And your mom's is thicker. I like it. No, don't be sorry. I'm having a great time. What do you mean? Sorry? You apologizing for how you talk? I don't like my accent. Really? How come?

Sacha Cardinal 17:06
I don't know. It sounds like French. So it's like, I don't know. I sound I sound like weird when I talk in English. Oh,

Scott Benner 17:15
I see. So what's so you speak French at home? Usually? Yep. Interesting. Alright, so hold on a second. Introduce yourself again. Like we're restarting the podcast and say you have type one diabetes, but say it in French? Hello. manasi Sasha gullfaks. She jiobit Super. Oh, wow. So English is not your first language? No, it's not. Ah, do you speak it just at school? or How do you do? How do you do that?

Sacha Cardinal 17:51
Um, yeah, basically just at school or like at work when like, I have clients that are English.

Scott Benner 17:55
Interesting. I don't know why you don't like your accent. They're like, are you aware of it? Yeah, I am. So so it's uncomfortable for you to talk to me like this because you're thinking I sound funny.

Sacha Cardinal 18:09
Yeah, like when I compare myself to others, I'm like, Oh,

Scott Benner 18:13
I shouldn't do that. Nobody cares. I have to be honest. I know. You're young. And it feels like everybody like looks at each other. And nobody really, it doesn't matter. Nobody. It doesn't matter what anybody thinks. I think your voice sounds great. So don't worry about it. very welcome. Alright, so they've got to put this thing in your abdominal cavity. And this is a lifelong situation, right? There's no better answer than this. This is the one. Oh, yeah, this is the one Okay. Does it hurt? No. All right. Can you feel it through your skin? I could at first but not anymore. Okay. And so, are you getting much better reaction to your insulin? Like did your Basal rates change and stuff like that? Like, do you need less insulin now that it's being absorbed this way?

Sacha Cardinal 19:08
Yes, and that's another type of insulin, I get the same amount of insulin except it's less concentrated.

Scott Benner 19:14
Oh, okay. So this is not you didn't go back to Nova rapid or something like that? No, you can't with that system. So what are you using? Um, I can't tell you the name because it's in Wait, like cuz you're a spy. And if you tell me you'll have to come kill me or something like that or what? Cuz you

Sacha Cardinal 19:36
know, um, cuz everything that like the insulin is actually from Germany. Because that's where they have that Daya port and like from Europe. Oh, so everything on that low like insulin bottle is written in Germany, you're using,

Scott Benner 19:53
you're using it insulin, and the bottle is not in any language that you speak Nope. So you would tell me what it was called. If you had any idea what it was called. Exactly. Well, hold on a second. What happens if you like, need to go to the pharmacy and ask for it? Um, I bring an empty bottle. This morning this lady. Yeah, exactly. So I I just googled Daya port insulin Germany and under images you're like the fifth hit. Oh, really? Yeah. With a picture of you wearing a shirt from the office. Oh, the one from to Okay, so you have Wow, this is fascinating. I I just thought for certain I'd see the insulin, but it's just not there. At the Ottawa Citizen calls you diabetic team, diabetic teen allergic to insulin injections undergoes first in Canada operation. Wow, the ones ever had this before in Canada, but you

Sacha Cardinal 21:09
know, actually no one on I call it the left side of the planet. So like the only place that has it is

Scott Benner 21:18
Europe. What do you think they call their side of the planet on the right side of the planet?

So beginning to really like you. Alright, so you're saying that you look, I know, this isn't about diabetes. But when you look at a map, canvas on the left side? Yeah. That's really interesting. Do I need this? Anyone else say that? Or is that just the thing you say? Um,

Sacha Cardinal 21:51
I never heard anyone else say it. I just started using that phrase the other day when I was trying to explain that only Europe had it. Okay, but I was losing my words. And then I was like, well, the left side of the planet doesn't have the diet for

Scott Benner 22:07
soldiers just in your head and not out loud for a second. Explain that in French in your head. Does it come out differently when you think about it in French?

Sacha Cardinal 22:22
Not really, actually. When I think about it, no.

Scott Benner 22:25
Okay. All right. I was just wondering if it was one of those things where you just didn't have the words. And so you just read for the closest word you had? You got a little softer. Do you know I get? I'm not sure why your voice got softer. Is it good? No. It's still sort of the same. I think sometimes you just get excited and you speak more loudly than when you're talking at a normal rate maybe? Yeah, that might be Yeah. All right. So. Okay, how long is the surgery that puts in the port?

Sacha Cardinal 22:59
So it's about 20 minutes for in Europe since like they already are used to it. But in Canada took an hour and a half.

Scott Benner 23:11
Come on Canada. Right now. That makes sense. Were you asleep for it? Or was it a local? asleep? you're asleep? Okay. Scar? Yeah, I do have one. Does it suck?

Sacha Cardinal 23:29
I think it does. People are telling me it doesn't really show but

Scott Benner 23:33
my daughter had to have a little cyst removed from near her fallopian tube, like a year or two ago. So she has these little scars on her belly now. And I have to say, I don't think she cares. Like I think she got used to it.

Sacha Cardinal 23:49
Yeah, that's what everyone keeps telling me that I'll get used to it. Yeah.

Scott Benner 23:52
What do you think you think you'd rather not have a scar on your stomach? I

Sacha Cardinal 23:56
definitely would rather not have one. But, but saving my life right now. So

Scott Benner 24:02
yes. It's an incredibly interesting thing. Isn't it? Like you have a problem? That if it wouldn't, have you thought about this, like, if you were born in 1950, they probably would have been like, we can't help you.

Unknown Speaker 24:17
I know. That's really crazy, right? Yeah. You're lucky in a weird way.

Scott Benner 24:25
But you don't need like, it's how you think about it. Right? You can either say I'm unlucky because I got diabetes. I'm incredibly unlucky because I'm allergic to insulin, and apparently no one else is. Or you can say that that was going to be true no matter what. And I'm really lucky that the technology and the medical understanding exists to mean that they saved your life. Really? Yeah. It's pretty crazy. I would think of it as being lucky if I was you. I'd call that my lucky scar.

Sacha Cardinal 24:54
Yeah, well, I like to say that I'm only like one of like three people.

Scott Benner 24:59
Yeah. And I don't know those other two people. So basically, you're the only one. Yeah. Just exclude that if you want. Oh, are you the only one in Canada? Maybe we could get you to the number one ranking somehow if we think about it. Yeah, the only one in Canada. Nice. So you're like a Canadian superhero, basically. Yeah. Right. That speaks that speaks French. Which is your superhero name? Um, I didn't think of that. No. All right. If it comes to you, let me know. So this thing goes in, you're able to begin using it right away after the surgery. And immediately, you can dial your blood sugars in and get your blood sugar better than it was. Yep. And no bumps. No bumps. Was that exciting? A little or?

Sacha Cardinal 25:54
At first, I was a little bit anxious because I was like, yeah, maybe right now. It's not reacting. But what about in like, a couple injection and then it's doing like big bumps again. It's a reason now it's been almost a month.

Scott Benner 26:12
You only had this month? Almost. Yeah. Three weeks? Wow. You're on the podcast because one of the listeners of the podcast, sent me a note and told me about you. I didn't realize that it only been a month. Yeah. Wow. You're like brand new, basically. Yeah. But you stopped you've been able to stop keep being concerned that it's going to stop working. Yeah, cuz right now it's perfectly fine. Along nice. Do you use a glucose monitor by any chance? Sorry, do you use a glucose monitor like Dexcom or a Libra or anything like that? Yeah, t Dexcom. t 66. Okay, so you can you really see the difference right now in your blood? sugar's Uh, yes. I went from 30 to four Wow, whoa, whoa. Oh, so you your blood sugar was you How long had you been leaving it highlight that? Three years now. Oh, holy. Can we curse? I mean, I can't if I want to. It's my I just don't know you're under age, but I was gonna say holy.

The T one D exchange is looking for type one adults and type one caregivers who are us residents to participate in a quick survey that can be completed in just a few minutes from your phone or computer. After you've finished the questions and they are simple I did in about seven minutes for Arden. You will be contacted annually to update your information and to be asked further questions. This is 100% anonymous, HIPAA compliant, and does not require you to ever see a doctor or go to a remote site. Every time someone completes the process using my link, the podcast benefits. So if you've been looking for a way to help T one D research, the podcast or both, nothing could be easier or more beneficial. T one D exchange research has led to increased insurance coverage for blood glucose meter strips changes in the ADA, changes in the American Diabetes Association guidelines for pediatric a one c goals. This is a big deal whether you know it or not. The FDA is expansion of Dexcom labeling to include finger stick replacements and Medicare coverage of CGM devices. And there's a lot more going on. Like I said, I saw somebody online the other day involved in a in an adhesive trial. They've got like four different spots on their arms, and they're just helping out. Now you don't have to do that. You can just answer the questions and be done with it. But if more opportunities come up, and you're interested, they'll let you know. T one d exchange.org. forward slash juicebox. There's links in the show notes. Links at Juicebox Podcast comm it only takes a couple of minutes to complete the survey. That's crazy. Say holy French for me. Holy cow. Wow, that was a letdown. Okay. You're Wow, your average blood sugar was in the five hundreds. And your a once he was like 21 ish. Um,

Sacha Cardinal 29:27
well for us it goes up to 14 so mine was higher than that. But we don't know the exact number.

Scott Benner 29:35
Do you feel a lot better? Definitely. Yeah. Kidding. So were you like, brain fog? Like, didn't have a lot of energy, all that stuff? Yeah, and I was always grumpy. Yeah, no kidding. Always grumpy might be the name of your episode. But that was um, wow. And but that was your only option. Yep, I'm sorry. That sucks. Well, your life is about to get so much better. Yeah. Good for you. Well, no kidding. Don't go crazy. You don't I mean, dude, I'm saying, like don't start running around with weird boys and doing stupid stuff and yeah, I mean maybe it's too late for that. Oh by the boys already weird. Yeah, joking. Wow Do you feel like can you describe how you feel like thinking about it? relief? Mostly. Um but definitely here say it again I'm sorry. happier happier. Yeah relieved, like in the big sense like did you think you were gonna die? Um, after last year? Yeah, I did. Is it hard to keep taking school seriously and worrying about things that you think aren't gonna matter? Because you won't be here?

Sacha Cardinal 31:14
Um yes and no. Cuz I still wanted to in my head like sometimes when I would stop and like think about it, then I was like, yeah, there's big chances that I won't make it to my 20s. But on the other side, when I was just running around doing things and not thinking about it, it was more that while you have to get your grades up to go to university, you have to do this. Like, I wasn't thinking about not being able to see that time either.

Scott Benner 31:52
Was it difficult to keep your grades up with your blood sugar that high?

Sacha Cardinal 31:56
Yes, and it was hurting so bad that the only thing that was going through my mind when the teacher was talking or anything was the pain and the

Scott Benner 32:07
pain from your your blood sugar being from the injections, oh, from the injection sites. So you were caught in a loop, where you couldn't give yourself enough insulin to bring your blood sugar down. So your higher your you know, all the things that go along with a very high blood sugar. And then on top of that each and every one of your injection sites was in pain. What kind of pain sharp stabbing dull, achy?

Sacha Cardinal 32:38
Um, there's actually no word to describe that pain, because it's like, all mixed together.

Scott Benner 32:45
Did it burn it? It did. I'm so sorry. And so every time you thought to give yourself insulin, you knew you're gonna create another one of these pain centers? Yeah. Were they better anywhere on your body over other places? Or did it not matter where they were? No, it did not matter. Holy crap. Wow. Yeah. Oh, geez. Did you cry a lot? I did. I was just thinking I would cry a lot. You know? Did were your friends aware of your situation?

Sacha Cardinal 33:20
Some of them more. But the ones that were aware of it, they didn't know the full story. And they did not know how bad it was? Or how about how bad it was like getting? I should say,

Scott Benner 33:36
if you don't have an answer to this next question, that's fine. I just want to ask it. Is there conscious thought that goes into how to pretend to not be in pain?

Not really, but are you trying to just act like it's okay.

Sacha Cardinal 33:56
Yeah, that's mostly how I was trying to cope with it. But it was always there.

Scott Benner 34:05
So walking, sitting, didn't matter. Walking

Sacha Cardinal 34:09
was the worst. Because especially when I was injecting all my legs, or my arms or like even the belly, like sitting down, getting up walking around, like everything was like my legs were moving, my arms were moving. My belly was moving. So like, you could feel the bumps. And then sitting down. It's, um, you were like, kind of relaxed, like you're relaxed when you're sitting down and everything. So you could feel the pain that way as well. And then standing up was putting so much pressure because there were bumps and they were heavy. So you could feel the pain and the pressure from these sending up as well.

Scott Benner 34:53
Oh, so not only were they painful, but they were pulling on your body too. Yep. Could you? Is it gonna sound strange? Or maybe it won't? Could you feel them when you're sleeping? Um, sometime? Yeah. Yeah. Like, do you get that feeling like you're never quite completely asleep and you're aware of the pain even when you're?

Unknown Speaker 35:14
Yeah, yeah,

Sacha Cardinal 35:15
I would get the max I had of sleep was five hours.

Scott Benner 35:21
Wow. And it's been going on for three years. Yeah, the pain and everything three years. And today you don't have any pain? No. Wow. That's amazing, isn't it? It's kind of magical. But there's a problem with all that, which is, some of this isn't paid for by?

Sacha Cardinal 35:43
No, actually, nothing is paid for right now.

Scott Benner 35:46
Nothing. So the surgery for the for the implant that wasn't covered by what do you guys call it the health? What do you guys call that? Um, Health Canada, Health Canada. Yeah. Health Canada, except for Sasha is what it should be called. But so the surgery your mom and dad had to pay for.

Sacha Cardinal 36:09
So on that side, we were lucky. The company that that I import, which is called a clash. They decided to pay for the surgeon from Germany to be flown over here. They also paid for the surgery. And they're paying one year of

Scott Benner 36:37
how can I say it like insulin fight and everything? Oh, the the site? So the tubing and all the other stuff that goes with it? Yeah, exactly. Gotcha. But then after that. Let's just say Justin Trudeau is not willing to pay for it. Is that right? Oh, yeah. Can we put it on him? Is that possible? He's getting gray. Haha. I know nothing about the man. I don't mean but I just I just pulled up a photo of him real quick, late. I was like it was beard back. Right? Must be a stressful job. So so we know maybe I'm maybe I'm getting ahead of myself. I was gonna say you need a plan here. But maybe not. You're independently wealthy, and none of this matters. I'm like, you guys have not really dollars in the bank. Sorry, you guys have like millions of dollars in the bank? And you just? I wish not. Okay, so. So there's costs involved here that the health care system in Canada won't pay for? Is it just a matter of you having to explain it to them? Or have they already had it explained? And they were like, No, thank you. And I

Sacha Cardinal 37:43
know, we explained a lot. And then we sent more letters that then more explanation. And then I think we sent about three to five letters to them.

Scott Benner 37:55
Okay. They're still not paying. They're just saying no. And the bigger they said the the biggest problem is the cost of the insulin that we don't know the name of Is that right?

Sacha Cardinal 38:08
And all of the others, so well together. I think it's a no sorry, all together, like the slides and everything. It's $15,000.

Scott Benner 38:17
So for the year, the insulin and the sights together are like 15. Yep. You're gonna have to get a job. No, I'm just kidding. We're gonna have to figure out something to do. Right. So yeah, at the moment, you have a GoFundMe? But but that's, that's not the, that can't be the answer forever. So no, exactly. Yeah. Yeah. See, you have to find a way to explain to Canada that you need a different help. Like, if you had like a weird, something else that nobody else had? They would cover it, I would imagine. I mean, I don't know. I think so. Hell Canada's special. I'd say is that what? What what are some of the things you've guys have talked about to try to figure this out? Like, if you thought of moving to other countries, or what have you considered?

Sacha Cardinal 39:17
We haven't really thought about anything else. You know, we were talking about the GoFundMe and things like that. Gosh, and the doctor said, like, if that doesn't work, then we'll try and find something else. But right now, we don't really have a plan. No. That's

Scott Benner 39:38
that's not fun. So do you feel like this is something that's going to get worked out? Or what's your level of hope for this? 5050 Yeah, you think maybe they'll help you and maybe they won't, but you don't have any reason to think one way or the other? Yeah, exactly. Gotcha. Wow. Well, I mean, I'll make sure people know about the GoFundMe for certain here. But I just feel like the bigger thing to do is to find someone who knows how to how to get inside of Health Canada and make people listen. And as crazy as it sounds, I might know somebody. So I'm gonna ask that person when I get done talking to you today, and see if they have any suggestions for you. They've had a little bit of luck getting coverage for CGM in Manitoba. And so they I think they know how to maybe talk to people or move them a little bit. And I'm wondering if they wouldn't have some suggestions for you. So I know of course, it's actually strange as we're talking about it. I think on Friday, this week, the episode goes up with Trevor about, about what they did in Manitoba. I'm actually gonna look real quick. I said real quick. And then my internet slow down. Yes. On the ninth. I'll put up an episode called Manitoba Strikes Back. So Oh, wow. Yeah. So and there's a pretty compelling blog post that he wrote about how to how to make change that I'll make sure you have to. Okay, so is there? I mean, is there anything that you would want people to know about this or anything that I haven't thought to ask you?

Unknown Speaker 41:37
Um, no, my thing that was we did all at the same. Yeah, we did a good job. Yeah. You're really?

Scott Benner 41:48
You're brave for doing this and talking about it. You're all your friends? No, I guess it made it to the newspaper. Right. So everybody knows. Yeah, we did. What was it weird to be like, like, famous like that?

Sacha Cardinal 42:04
Um, it was, especially at the beginning, because I also got hospitalized for four months. And then starting to get messages from my friends like asking where I was, and things like that. So I was like, Oh, well, I guess. Now it's time to tell them that I'm actually not doing as great as they think.

Scott Benner 42:25
Oh, I see. You're keeping a pretty private for a while. Yeah. When you're in the hospital, how were they giving you insulin in the hospital?

Sacha Cardinal 42:36
They weren't giving it through IV. So into my veins so that I wouldn't react. And was that working? Well?

Unknown Speaker 42:44
Oh, yeah, it

Scott Benner 42:44
was actually that's how they got my numbers now. At first. What, um, what is it like being in the hospital for four months? Um, as stupid as it sounded, was exhausted. exhausting. Okay. Was it good? Tell me why. Sorry. That's, I was gonna say, Tell me why. But it sounds like a fight broke out about a baguette in the background. Yeah, my mom and my brother are playing. But what was exhausting about it? Um, well, especially with COVID. Right now, you can't really see anyone inside or outside, you can't go out you can't do anything. And then being sitted in a bed all day long, and not being able to move around because you have this big pole following you everywhere. Yeah. made it even harder. You tried to do school while you were there? Yeah, I actually didn't really have a choice. So I wouldn't be graduating. didn't have a choice. I would think you might get a pass. Maybe. Maybe they'd be hoping for one. But they didn't. Well, you still need to learn. I'm sure you learn some very important things while you're in there. I feel more over there. I could be a nurse now. You learn how to be a nurse while you're at the hospital. Like after a while you're like I see how this goes. I could do this. That is really super interesting. Um, well, I'm happy that you have an answer that is, you know, health wise, like forget the rest of the stupid stuff for a second. health wise. It is a pretty exciting time for you must feel like you have a brand new life. Yeah. Good for you. That's exciting. Um, do you have a website or is it just the GoFundMe?

Unknown Speaker 44:37
I just okay.

Scott Benner 44:41
I don't know a lot about GoFundMe. But I'm going to go to it for a second and hit search. And I imagine if I type in your name, sa si ha. And then do I need your last name? I'm not sure I haven't went on it in a while. Well, I'm gonna look on a second. I typed in your name and it didn't come up with you. That's not a good sign. Is your mom there? Are she going your brother? She's still with my brother. She like she beat him up or what do you think is happening right now? I really don't know. How old How old is he? He's 20 Oh, I see. Yeah, yeah, like Yeah. Alright, so I'm gonna your mom's I mean, I'll get a link or something. And I'll put it in the show notes of the podcast so people can find it. Okay. Thank you. Yeah, of course. I really appreciate you doing this. It was nice of you to come on and tell me about this is really like such a rarity that it's kind of crazy. I know. It's your life. So it doesn't feel that odd but it's very strange to hear. So no, thank you for having me. No, it's my pleasure. Well, how about that, huh? allergic the insulin and have is type one diabetes. That is as bad as frightening as it gets for me. I don't know about you. If you'd like to help support Sasha, she has a GoFundMe and I'll tell you how to get to it at the very end. For now, thanks so much for listening. Thanks for considering going to the T one D exchange and joining the registry at T one d exchange.org. forward slash juice box. For those of you who became members of the show or bought me a cup of coffee, thank you so much. Buy me a coffee.com forward slash juice box.

We'll put a link to Sasha's GoFundMe right here in the show notes and a Juicebox Podcast calm on the episode page for this episode. Her name is spelled s AC ha that will help you the title of her GoFundMe is help Sasha have a normal life without worries. There's a picture of her in her hospital bed. When you get there, you'll see it. Or you can go to go fund dot m e forward slash d f zero c a six A B, but it might be easier to get the link for my website and click on it. Help Sasha have a normal life without worries. If you're interested head over and take a look. Thank you so much for listening to this episode of the Juicebox Podcast. I'll be back soon with more. Until then, I hope you have a great day.

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#503 Manitoba Strikes Back

Don't mess with Trevor.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to Episode 503 of the Juicebox Podcast. This episode comes to you directly from the great white north. And in a second, I'll tell you what it's all about.

Trevor and his family live in Manitoba. And they got very involved in politics, and fighting for people with type one interesting story about making change. And if you're looking to make change of your own somewhere in your own life, is a heck of a blueprint in here. On top of that, Trevor wrote a great blog post about how they did what they did, which you'll find out about in a second, and I will link in the podcast show notes. It'll also be available at Juicebox podcast.com. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin.

I wonder if anyone listening to this remembers Bob and Doug McKenzie. That has nothing to do with today's episode. But I said the great white North earlier than it made me wonder. And if you know what I'm talking about. Anyway, here's Trevor. This episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom g six continuous glucose monitor, please learn more about the dexcom@dexcom.com forward slash juice box. The episode is also sponsored by Omni pod, and you may be eligible right now to get a free 30 day trial of the Omni pod dash that is using an insulin pump for free for 30 days, run over to Omni pod.com forward slash juice box find out if you're eligible. And I'd like to thank some members of the Juicebox Podcast recently in an episode I described that there is now a buy me a coffee campaign for the podcast. It's buy me a coffee.com forward slash juice box. It's a place you can go and throw in a couple of dollars. We're even by our membership. The money just goes to me just money I'll use to pay my bills and support the show. And, you know, I explained it in other episodes or people who were looking to do some more. A number of them reached out to me. We ended up doing this. And much to my surprise, somebody actually went and did it, which was was really heartwarming and touching honestly. But anyway, when you join and become a member, I say your name. So thank you very much, Marilyn, Allison, Larissa, Melissa, Leah, blue, Julie, Grace, Daniel, Jennifer, and Jen that it was very kind of you to support the show in this way. And I appreciate it. Ladies and gentlemen, people who are sending me money, yay. Anyway, the podcast is ad supported. It is my goal forever to keep it free for you to listen to. This has nothing to do with that. Don't think that I'm moving towards something else? I am not. I am definitely not as long as I can cover this podcast and my costs. With advertisements, I absolutely Well, this pod cast should be free for everyone who wants it. And it is part of my fight to keep it that way. This is just a thing that incredibly kind people have done. And I thank them. Alright, let's get to the episode. So I can stop being uncomfortable. Because anyway, this is a nice thing that people did. I don't think it's something I would have done on my own. But I appreciate the support very much. Here's Trevor.

Trevor 3:59
I'm Trevor. I'm the parent of 10 year olds with Type One Diabetes. We live on a small farm in Manitoba, Canada. It's the traditional territory treaty, one territory, the the original lands of the Anishinaabe, a. Cree, Oji, Cree, Denny, Dakota peoples, and the traditional homeland of the maytee people. You know, Trevor, if you ever want to context, if

Scott Benner 4:31
you want to talk about diabetes stuff, you shouldn't leave with something like that.

Trevor 4:36
Um, it's, I guess it's, it's something that we're trying to do more in Canada, no matter what we're talking about, to just give some context to the place where we are. So a lot of people are doing this now. In in their introductions, oh, and also my pronouns are he and him?

Scott Benner 4:58
Well, here's something that you're not going to I'm saying that I think is super important. You look like you're 12. And I can't believe you have a child.

Unknown Speaker 5:07
I don't mean that.

Scott Benner 5:09
There's no way you're 30. Like if you said to me right now, Scott, I'm 18. And I'm just getting going in life. I'd be like, yeah, right on, let's talk. You would have never, I would never think that it's just a, it's hilarious, but it's great. When you're older. You'll be thrilled about it. Trust me.

Trevor 5:26
I guess I don't know. Yeah, I'm waiting for that. When you're 50 match up.

Scott Benner 5:32
That's a long time to pay you back. But when you're like, 5055 years old, and people are like, Oh, my God, Trevor looks is 40. Right? You'll be like, Yes, I definitely 40 you just go along with it. you nod your head and that'll be that. Yeah, there you go. I'll pay you back soon. Well, that's very nice. Tell me a little bit. You said your son, right. Yeah. How old was he when he was diagnosed?

Trevor 5:53
He was eight. I think in some ways, we had a really typical diagnosis story. Nothing like DK on a plane. was incredible. I couldn't believe that story that that was amazing. But yeah, here in

Scott Benner 6:11
I'm sorry. I should have been here. When I was recording it. My heart started beating. I got all sweaty and clammy. And I was like, Oh my god, it was like, you know, and you're, like watching Titanic. And you're like, yeah, you as I was listening. I know this boats gonna sink. But I'm still really like, invested. And I was I was just listening and so invested in what she was saying. And, and yet, I'm like, I know the child's fine. I know. It's years later, you know, all that stuff. So anyway, I'm sorry. Let's get worse. I

Trevor 6:40
wish that she could have remembered where in Canada she had landed. I was just so curious to wonder like, well, which hospital was that?

Scott Benner 6:49
wasn't an interesting that it was so such a harried experience that she was? Yeah, literally in a place. And she didn't know where she was. And it didn't, right. That's fascinating. Yeah, really. Anyway, a couple years ago.

Trevor 7:02
Yeah, he, I mean, he had all those typical signs, like, was so thirsty, and really tired and super hungry and peeing a lot. And we tried to get an appointment with our nurse practitioner, and she was on vacation, and we got an appointment, that would have been like two months out or something. And so again, my my husband took him to a walk in clinic, and the walk in clinic doctor there completely missed the diagnosis, and said, Well, you know, there's been this virus going around. And a lot of kids come in looking like this. And and, I mean, the doctor, at least did want to do bloodwork and did ask, Is there any diabetes in your family, which there wasn't. But the the appointment was on a Saturday, and it was the start of a long weekend, and all the labs were closed already. So and I think I think we had a bit of a false sense of reassurance, having seen a doctor who didn't say, you know, rush this child to the emergency room, right? We waited out that weekend. And, and then my husband took him to the lab on Tuesday when the lab opened up again. And, and took him to have his blood work drawn, and brought him back home. And then he went to work. And I just, I looked at our son sitting on the couch. And I could see his breathing was different. And at that point, I was like, Okay, this is just terrible and scary. And I have to take him in right now. Like then I knew we can't, we can't wait for lab results. Like we just have to take him in.

Scott Benner 8:54
I have a question. And it's gonna be a little hindsight. But when the doctor says is there any history of diabetes in your family, you say no. If he would have said is there any history of autoimmune and started listening, listing them celiac thyroid like that, would he have hit on something?

Trevor 9:12
Yeah, yeah, my partner has thyroid.

Scott Benner 9:15
And that's something it's just you can't you just have to ask the bigger question because it doesn't always go you know, thyroid doesn't always be get thyroid, diabetes, etc, etc.

Trevor 9:26
Yeah, well in the the people at the emergency room, they like the endo there I think ended up phoning that walk in clinic doctor and saying like, Look, if you even suspect that it could maybe be diabetes in a child that's a pediatric emergency. You don't wait over the weekend for that.

Scott Benner 9:45
You don't you don't ask two people who aren't doctors hate you think this is diabetes? Yeah. I don't think so. Oh, okay. Good enough for me.

Trevor 9:56
Thanks. Yeah. So like when I took him to the hospital, the key He was in TK, a, the, the intake nurse knew exactly what it was. I didn't even get through listing all the symptoms. And she got out a blood meter and pricked his finger and the machine just read Hi.

Scott Benner 10:17
Oh, that's somebody who's seen it before, you know, know what to do right away. I will never forget. We we had basically diagnosed Arden prior to taking her to the hospital. And we told the intake nurse, she has diabetes. And she was like, and what's happening? And we went, Oh, no, no, I'm sorry. We're telling you, we just figured out she has diabetes, like it first it came off like, oh, we're here. Our daughter has a problem in the emergency room. We just want to let you know she has diabetes. But what we were trying to say was, hey, hey, look up. We just figured out she has diabetes, using Wow, very primitive internet back then, by the way. I wish I knew what website we landed on to figure that out back then. But I don't remember. So for you. So what happens next year, you're in the hospital DK a younger kid. I was just speaking to someone from Canada the other day, who did not have glowing things to say about the health care system. But did tell me that in an emergency situation you skip you know you don't. The waiting that apparently happens on other stuff doesn't happen, obviously with emergency stuff. So what happens afterwards? Yeah,

Trevor 11:25
actually, that was what I was about to say. Like we didn't even see the waiting room. We just went right in and the the ER nurses were really great. I will never forget them. Their names were Rico and Nico. Those were two of the nurses that we had. They, they had to struggle to get an IV into him because he was so dehydrated already by that point. So that was pretty rough. But he was also feeling so awful. That he didn't, he didn't complain, he didn't fight the needles going into his arms.

Scott Benner 12:01
That's a sad remembrance that you're that somebody was so sick, that stuff that would normally make you go Whoa, what are we doing right now? You're just like, whatever doesn't matter. You know? Yeah, fight back. Oh, my gosh, hey, Rico and Nico. Did you go to a hospital run by the Disney Channel? That's amazing.

Trevor 12:18
Yeah, right. And I also one, one thing one of them told me that I'll never forget. And, and that I think really affected my whole outlook was, he said, this is really overwhelming right now. But within a few months, you're going to be the expert on this for your child, you will know more than any nurse or doctor because you're going to be living it and you'll know what to do. And at the time, I thought like, That's impossible. I'm not gonna know more, more than the endocrinologist or whatever, you know, but but then you get in that situation and and you realize pretty quickly Yeah, we live with this every day.

Scott Benner 13:01
That's a loving thing to say, because it's not a great in the moment message, but it is the right message, you know, to me, like, you know, because I could see you having the exact response that you had or like looking at, I'm like, wait, what is this person talking about here? Like, I'm never gonna know more than a doctor about this like, but just that that's something you look back on two, three weeks, I would imagine a month later and you think, Okay, well, the person told me, we're going to gain knowledge and, and soon we're really gonna have this and I would think of that as comforting moving forward.

Trevor 13:31
Yeah, it was an it was a really busy time in our lives. I was about to run for election in, in our country's next federal election, actually, my nomination meeting happened 10 days after our son's diagnosis. So that was, that was a time of a lot of learning for us to try to run our first ever election campaign is that was a huge, huge deal. And when the endo was like, well, you're going back to school now. Like you're gonna learn diabetes for the next three days. for eight hours every day, it's like, Whoa, do I have to do this right now? It just it seemed it seemed like a lot and I didn't know anything about it. I didn't you know,

Scott Benner 14:24
what did you do? Did you put something aside or did you balance the whole thing?

Trevor 14:29
Um, we just did everything. We somehow did it everything I looking back I still I have no idea how we did it. are really really kind friend of ours who has a child with type one who was diagnosed as an infant. She came to see us in the hospital. This was back before COVID when people could actually visit people in the hospital. And she brought she brought a bag of coffee as well as a food scale. And she showed us how she was watching her kids blood sugar's on on their CGM. And actually they were looping. And so she told us about loop and all that stuff. And the bag of coffee really clued me and I was like, oh, okay, like, there's something about this is going to make it so I don't get to sleep anymore.

Scott Benner 15:25
I love that idea. I thought they would just bring you hammered hit yourself in the head with a seat, I'll have to have to have to experience the whole thing in exact reality. Well,

Trevor 15:34
she she was really great because she also said, Don't leave the hospital without a prescription for a CGM. And that was fantastic advice. And it actually it took a fair bit of fighting to get that because we what we were going to find out is that our clinic here is very old school. Like I always I get a kick out of it, when when I listened to an episode, and you're talking to an older person or someone who was diagnosed, you know, 20 years ago or something, and, and you you'll say something like, Oh, so was that back in the day of NPH. And in Toronto, insulin or something. And I'm like, yeah, we still use that now. Here in Manitoba. I'll tell you right now we have a big pile of it over here for using it up, right. And that's still how they'll start people off just they start every child here on NPH. Insulin, and it's in part because of the school system. Because we don't have any nurses in the schools, and school staff are prohibited from helping children with their insulin. They're also prohibited from giving glucagon. So you're really you're on your own. And, of course, NPH it's an intermediate acting insulin, that peaks somewhere between six and 12 hours after it's given in, you're supposed to somehow use that to cover their lunchtime carbs.

Scott Benner 17:05
Trevor, I have to tell you that more and more people coming on to the podcast from Canada, and it, it ruins the shine that I think about with Canada every it's such an odd idea that I mean, we're going to give somebody a medication that is considered to be, you know, from another era, because we don't want to put a nurse in the school.

Trevor 17:30
It is such a huge problem. Like our our health care system will pay for a lot of things. It will pay for you to go into DK twice a month and be hospitalized twice a month for as many times as that has to happen. But it won't pay for for a nurse in the school. It won't pay for a CGM. Yeah, really interesting. Yeah, yeah. Because we, you know, we have health care, but we don't have we don't really have a pharmacare system. Right. So there's, there's a lot of problems.

Scott Benner 18:06
But it's such a constant. I mean, that's such an I know there are a lot of problems in the room. And they're not all easy to fix. But this one's right there. It's obvious, right? Like it's, you can explain it to somebody who doesn't understand it in five minutes. They'd say, Oh, I think we're doing that wrong.

Trevor 18:20
Yes. Yeah, exactly. Exactly. And, and we've been a group of us have been working really hard trying to get this changed here. And it's it's incredible how difficult it has been. What I heard one person say is fighting so hard for never enough.

Scott Benner 18:42
That's a good point. Yeah. You're never really getting even when you when you don't get what you need. You get a concession.

Trevor 18:49
Right. Yeah, I mean, when when we started working on this, our province had no coverage for CGM for anybody. And, and after months and months of putting pretty intense pressure on the government and getting a lot of stuff in the media. In the in the recent budget announcement, they announced coverage of CGM and insulin pumps up to age 25. And this after 25 you just just do a better job on your own.

Scott Benner 19:21
What is that Manitoba? That's where you got that done? Yeah. Tell me how, who spearheaded that? Was it you and or somebody else and how do you how did you pull together? Kind of a grassroots fight like that?

Trevor 19:35
It was a whole group of us. I think a lot of people have been trying for a long time. So it wasn't any one person doing it alone. But I think it was the coordination this time that made it kind of different. I think a lot of people have felt very isolated and lonely, having their battles kind of one person at a time. Like there's so much to battle for I mean, we had to, we had to actually fight to get off of NPH. Even that was a fight, even though I could drive to my kids school every day and give him insulin every day for lunchtime, and I said that I was willing to do that. But that was a fight to, to convince them to let us make that change. So you're, you know, you're fighting with the clinic, and you're, you're fighting with the government and, and it's all it just feels like too much if you're doing it alone. But when the when the pandemic started, in our private local Facebook group, there were just so many posts from people struggling where it had always been hard, like this province had some of the worst worst diabetes coverage in the country before and, and then with people losing their private health insurance for what little coverage they did have and losing their income. It, it just got so bad. And I convinced a couple of people to participate in a news interview for CBC. Okay. And finally, when a couple of people were actually willing to talk about it publicly, then a whole bunch of other people saw that it was not just them alone. And and then suddenly, it was like the floodgates opened. And we set up this public Facebook page where people were sharing their stories. And people started out kind of sharing more privately, anonymously. And then the more that people shared, the more confident everybody seemed to become, I think, you know,

Scott Benner 21:47
it's funny, this is not related to doing anything good. But somebody's got it in their head to mess with me, during the pandemic, and I said to my wife, I was like, this person better stop, because I have a ton of free time right now. I'd be happy to get into this just to give me something to do. And isn't it interesting, too. And I want to understand, like you said a little bit, but I do want to share a little more deeply how you got some success. But I think that the it's not a misdemeanor, I guess it is the mistake, the mistake some people make when they're fighting against something like this, is that they think they're fighting for right versus wrong. They think that they're going to hold up, look, this is right, this is sensible, you're in charge of helping us see that this is sensible, make it make sense. But that's not really the path you need, the path you need is take the person who makes sense. And I know this is terrible, who's in power, and show them how helping you will help them. And when you do that, you get things done. But you know, people don't do things for the right reasons. They do things, sadly, most of the time to move themselves along. And you know what I mean?

Trevor 22:58
Yeah. Is that Yeah, we we have a government right now that it's a it's a conservative government, it's very interested in saving money. So in that budget announcement, almost everything else that was announced was cuts. Yeah. And and people really applauded Oh, wow, you got coverage up to age 25. Which, of course, we felt like Well, that's it's really not good enough. But people were excited that that we got something. But yeah, I think I think from from a citizens standpoint, you feel like, you know, I took half an hour and I, I wrote an email to my representative. And, and that was a big deal for me. And on their end, they don't even see that stuff. Like, I mean, those emails and phone calls, they go through assistance, and they don't even get passed to the representative until there's a certain volume, I think. And then if you also get something in the media, that's when there's suddenly you get noticed.

Scott Benner 24:06
And so May I take play devil's advocate for a second, as a person who runs a Facebook page. It's not apples to apples, but it's sort of is if you think about it, one Kook, you can't respond to, because then you get mired down in just like someone's crazy focus. But when you start hearing from 20 people, you go, oh, maybe this isn't a crazy thing. Maybe this is something people think. And it brings your attention to it, then you're like, Okay, like it part of me thinks that's terrible. That one person's voice doesn't make it to where they intend. And then then there's a part of me that goes, Well, it does make sense if I was on the other end of this and I addressed every single piece of email that came. I'd never get anything else accomplished.

Trevor 24:52
It's sure yeah, I mean, they're, they're busy and overwhelmed. It's the middle of a pandemic, but but also People have been trying to get this done for years. And there have been organized efforts before done by diabetes Canada and jdrf. Through their advocacy branches,

Scott Benner 25:11
do you think I don't mean to cut you off? But do you think that that's known from elected officials elected official? Like, couldn't that have been done while someone else was in that office? And then the new person might not even know anything about it, right?

Trevor 25:23
Yes, yeah. There's that too. Yeah. Yeah. Yeah. I mean, some of them there. There were some people that we, we found, I mean, we went back into Hansard is where you can look up everything that's ever been said in the legislature. And so we found some people that were like, hey, when back when you were in opposition, 20 years ago, you were talking about how, how the government needs to do more to support people with type one diabetes. And and now you're the health minister. What, like what's going on? Why is it so hard to reach you?

Scott Benner 26:01
because nothing's about you want to hear a little bit of my thoughts about things. Nothing's about what it seems like. It's about everything's about having power and keeping it or not having power and getting it. That that's how people's minds work.

Trevor 26:16
Yeah, one that's where it's so important to bring in the media, I think.

Scott Benner 26:22
Right? Yeah, to to shine, it's the bright light, you shine the bright light on you go look, we can't ignore this. You're doing a bad thing. We're gonna let people see if you don't do something. It's it. You're holding people's feet to the fire.

Trevor 26:34
Yeah, and we tried to always keep it really positive. We we've always just said like, this is about education, we're sure that once they really understand that they will support this because it's so obvious once you get it, you have to do something. So so we came up with with all sorts of stuff to get this into the media. The first one was the great manitoban fingerprick challenge, where we invited all our MLA is to pick their own fingers 10 times in one day, because that's what Manitoba pharmacare does cover right. It covers those finger pricks right but not a CGM and and we actually had a surprising number of MLA is take us up on that challenge. We got about 15 of them to do it and we asked them all to make videos of themselves doing it and post about it on social media and a lot of them said that they they learned a lot oh and this is where we could do your ad for the Contour Next One because when I we worked with a pharmacist actually my kids pharmacist he has a kid with Type One Diabetes and and so he supplied the fingerprick kits for the politicians and he like he was so happy to do this and and have them have that experience. But when we were talking about well which kind of which kind of finger picker should we give them like what brand are we going to go with and we both agreed that it would not be the Contour Next One because it has that option to try again with the same strip all the other ones don't right we were like it could be anything else but not that one.

Scott Benner 28:26
Trevor This is unprecedented for the show but the Contour Next One blood sugar blood glucose meter offers Second Chance test strips meaning if you go in one time get some blood but not enough you can actually go back get more without ruining the test strip or messing up the accuracy of the test contour next comm forward slash juicebox Okay, no, we'll go right back into that Trevor that was excellently done. So you didn't want to give them a good meter you wanted them to struggle a little bit?

Trevor 28:52
Well, no, I mean, we wanted to give them a good meter we did we did give them a good meter just not the Contour Next

Scott Benner 28:59
One that was gonna help them I see.

Trevor 29:02
Yeah, so So I mean, they they got a very nice modern meter just not not the Contour Next One. And yeah, there there was not a single politician who was actually able to complete the whole test without getting any error messages and without wasting a strip. So I think they all learned a lot from that experience from having to actually do it because a lot of people go through that.

Scott Benner 29:31
Yeah, that's excellent. That's a great idea. You know, it's funny when you first said you did the Manitoba finger prick challenge. I thought you just told a bunch of people in Manitoba to give the finger to the person government. That's exactly what I thought you were gonna say. We ran up to their buildings and gave them the thing. You can see that my um, my ideas probably would not have led to any success, but what did your ideas lead to?

Trevor 29:56
Well, the first thing was really great media coverage. which helped a lot. I think for for media, you kind of you need a reason why should they cover this right now, you can't just say, hey, look like these people with diabetes, they don't have good enough coverage. And it's always been like this, and we would like it to change now. But if you create an event, or I mean, I hate to say gimmick, but it's almost what it is, in a way, in a very fancy and educational media gimmick, then they will report on that. So each time we put together something like that, we put out a press release that we sent out to every local journalist. And so a lot of them right away, picked up the great manitoban fingerprick challenge. And they wrote about it before we even had a single MLA signed up to do it. So that that was pretty cool.

Scott Benner 30:58
I would love to have seen in the backroom, like in in the government side, like if they're just like, Oh, I saw that in the news. I guess we should not ignore these people. Like if it's just that base and simple. You know what I mean? Like you put it in their face. So they're like, well, we can't ignore this. We're hearing about it somewhere. It's almost like see three tweets. And you're like, Oh, it's a thing. It's not a thing. Yeah, three tweets. But yeah,

Trevor 31:18
I think it might be as simple as that. And then we just we kept going, we got a certain number of MLS that did the fingerprick challenge. And that was great. But But then we needed more reasons to get the media to cover it. So the next one that we did was the antique diabetes roadshow. And a group of us showed up outside the legislature, with with antiques from the same era as as fingerprints, right, from, you know, stuff from the 80s. And also also, we talked about NPH, insulin being so ancient. So we brought things like a typewriter, and just made a display outside the legislature. It's a real challenge with COVID. Like how he can't really do a protest, you can't, you can't have 1000s of people show up and show your strength in numbers. So you, you have to be really creative at that time, our gathering limit here with 1010 people in a public place. So we coordinated amongst ourselves and made sure to have no more than 10 people. Media don't count towards the public gathering limit.

Scott Benner 32:36
Which was very helpful. And funny, by the way, if 10s that Oh, yeah, right. What's 10? Unless you're in the media, then there could be 50 people here, you're fine.

Trevor 32:47
That's great. Yeah, yeah. Well, I mean, I guess because they cover, they follow protocols, right for them for themselves. And, and I think it's important for media to be able to cover events, ya know, they're very important part of our democracy. So I guess that's, that's why they don't count towards that limit. But But again, so we sent out a press release the day before, and then we sent it out, again, the morning of and all the media showed up to cover this event that we had. And then two weeks later, we did another one, we did The Amazing Race for diabetes coverage, and kind of had had this events sort of Amazing Race style. And so for that one, we invited MLA is to partner with someone with Type One Diabetes. And by that time, the gathering limit had changed to 25. So it was a little easier to coordinate that. And then so we had the MLS, doing things like, oh, at this table, you've got to count carbs, and you've got to figure out an insulin dose, and then we would kind of we would make it so the insulin dose would be really hard to do with pen needles. It would work out much easier with an insulin pump, but then it would be this opportunity to explain to them, like this is how this is so difficult. Yeah, on a daily basis. Without this, these are echnology

Scott Benner 34:12
really creative, brilliant ideas to show things to people. It's easy, because you have to make yourself you have to make yourself a human being in their eyes. Because I think that I think the one thing that happens in government, and I certainly don't want to be in charge of a government but if you put yourself in the shoes of someone who is not just thinking about people with diabetes, or people who have cancer, people can't afford their electric bills, but they're trying to think about not just I think you you want to hope that a leader is thinking about everyone.

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But I think they're thinking about the machine about keeping the country moving about being here in 50 years, 100 years about not having your democracy fall apart like that. They're thinking about bigger ideas. And it's hurtful, but kind of obvious to realize that on a person to person level, you really aren't the focus. Did you know what I mean by that? Like it's almost like with a mother ducklings walking along with eight or nine ducks and one of them breaks a leg. She looks back and goes alright, well now I got one less talk and I keep going like that's that, like keep the pack alive mentality that I can understand, but makes this kind of stuff. So difficult to fight against because and then I guess the only way to really do it is to stop and go look, we're not a pack of ducks. I'm a duckling with a broken leg, like see me and then help me because not only do you have the power to help me, but we are putting effort and money into things that are far less productive than what we could be doing.

Trevor 39:50
That's I mean, that's where like we also have to point out that the broken leg is actually really expensive for the whole system right and here in in Manitoba, we have the highest per capita rate of dialysis in the country. And of course the system pays for that and has to pay for that. Excellent.

Scott Benner 40:09
Excellent. Excellent that people have dialysis. Sorry. I got ahead of myself there. Yeah. What you point out to them is no, we can't walk away from this duckling. It's chained to us. And we're dragging it along with us. It's it's Yeah,

Trevor 40:22
right. Yeah. Well, one, one of the health ministers assistance actually was the inspiration for the next event that we planned because this was after the budget was announced. And, and we just we kept phoning. We kept phoning the health minister's office saying, Well, what about everybody over the age of 25? What about all those people? And And what about all the long term complications on how expensive they are? And in one of those complications, the health match one of those conversations, excuse me, the health ministers assistant said to me, Well, not everybody with Type One Diabetes ends up on dialysis, you know, and I think like he was trying to say this in the context of the cost savings analysis, right, but it comes down, one would be looking at, but he gave me this idea. I was like, Well, how many people with type one diabetes do end up on dialysis? How does that work out? And I was shocked to look up those statistics. It's, it's really scary, Trevor, it's

Scott Benner 41:30
almost as if that insulin that was being used in the 70s. And 80s, is not the best way to take care of type one diabetes. And that's shocking. Right? Oh, my God. Yeah, you must have been just knocked right over.

Trevor 41:46
I mean, like, when, when our son was diagnosed, that, that first day in the hospital, the endocrinologist talked to us about our private health insurance and what we had, and as a Canadian, that's really shocking. We're not used to that you're used to like, you go to the doctor, you never pay a cent. You just show your health card. And, and it was, it was incredible to, to have that conversation. And then, and then the diabetes educator said something like, you know, I think she wanted to impress upon us how serious this disease is, and the consequences of long term complications. And so she was talking about all that stuff. And I was like, Yeah, I am really scared of that. I, I have a friend my age, who is on dialysis, has had an amputation, and has lost his vision. And I don't want that to happen to my child. And I don't understand how this happened to my friend who's the same age as me. And she said, Well, that it doesn't really, it doesn't have to happen anymore with the technology that we have today. Great. And and then you go, okay, but that's not covered for everybody.

Scott Benner 43:07
And I know. You can't have it. But I'll tell you what, if you did, you'd be so much better off anyway. We'll see you later,

Trevor 43:15
right. Yeah, yeah. So I think I mean, it was some of those early conversations that also planted the seed for me that that eventually, once once our family personally got out of just struggling with how to cope with everything that that hopefully we could do something. The day that the day that we went to the clinic to get off of mph. I actually I drove through a terrible snowstorm to get there. But I was like, I am not going to miss this clinic appointment. This is not going to read delayed again, like we just have to get them off of NPH. So we drove through this horrible snowstorm. And because of the snowstorm nobody else had showed up at the clinic that day. So we were just kind of chatting and the diabetes educator told me a story about a child in foster care that she'd cared for. And that had seen another kid wearing a CGM and said to the educator, why can't I have that? Oh,

Scott Benner 44:25
geez, did they tell them why? Because you're poor, and you don't have parents and we don't care about you? Because that seems like how it feels. You know what I mean? Like really, really? I don't mean to be harsh. It just, it feels like what else would you say to them? And not that you would ever say that to a kid? Let me backtrack. But I mean, if that's the honest truth, then what do you say? You say, look, you don't rank here. And so you know, you don't get to have this stuff. It's it's just fascinating and like you said, but they are banking up money so that when that poor kid grows up, they can put them in the hospital for DK twice a month and get them on, you know, some sort of a kidney. dialysis? Really, it's just do you think do you? Do you have a feeling for why the thinking is that way?

Trevor 45:10
I think, um, I think governments like to think very short term. So even when you talk to them about long term complications and the money that they would save, if they covered the appropriate supplies and devices, I mean, even insulin, there are people in Canada who are rationing insulin, because they can't afford it. And I know, it's it's nothing like the problems that you have in the US, but it shouldn't be happening anywhere. But so they they think, well, that's, that's long term. And we want to save money. Now we want to, we want to say that we're being fiscally responsible, we want to cut taxes, we want to do all those great things. So one thing that we've we've started trying to talk to them about is understanding what it can mean with diabetes. When you say long term complications. If you're talking about retinopathy, it's not really that long. Like, I mean, I think it's something like 8% of people with type one diabetes, will start showing signs of retinopathy. Just three years after diagnosis. It's not that long.

Scott Benner 46:21
Yeah. Being well managed. Things are going to go downhill quickly.

Trevor 46:26
Yeah, yeah. So it's important, I think, because politicians don't they don't know what what you mean, when you just say long term. They're used to it. If they're used to thinking about infrastructure or something, then they're thinking 80 years. Right,

Scott Benner 46:42
right. Yeah, that bridge will start crumbling in 2093, we'll get to it. That Yeah. And by the way, they because they thinking because they're thinking about the money part of it, you really don't get thought of as a person, like, you're not a bridge, we can't just come along and fix you. Like, once your eyes don't work. You know,

Trevor 46:59
they don't work. You don't you don't get to like patch them back together again. And there are treatments, but they're not. They're not going to put your normal, there are treatments that are also very expensive, like the you know, the eye injections that they do, right? I finally found a source for that for the just how much it costs, and it's about $7,000 per injection per eye. And they're

Scott Benner 47:25
not ever you have to get a needle in your eyeball. So right. Can I just have a CGM, please?

Trevor 47:33
I know, right? Yeah. Yeah. So we I mean, we try to talk about all those things. But it's, it's there a lot of moving pieces there. Because even if you convince, say, your local politician, and the person is like, Yes, I get this, you need this. But I am not the health minister. I am not the civil service. And I am not the finance committee in Union to convince all of those people. So how did

Scott Benner 48:00
you like, how do you do that? Like and how big is Manitoba? Like, give it to me, like, pick a state in the United States? What does it measure up to like size wise?

Trevor 48:10
Well, Manitoba is not that big. I mean, we have about 1.3 5 million people here.

Scott Benner 48:16
But but but this is where you focus on and this is where you were able to make the change.

Trevor 48:21
Yeah, yeah. Because in Canada Health is it's provincial jurisdictions. So we focused on our own province here, where we live.

Scott Benner 48:33
So let me ask if you somehow ended up magically changing everyone's mind in that province. It's not like what you taught those people would have an opportunity to bleed out into a different province. Is that right?

Trevor 48:46
I think it could help. One, one thing that we did here was there while we were running this campaign, a couple of other provinces made commitments to improve their diabetes coverage. And then it became very clear that Manitoba was the worst in Canada. So that was another press release. No, nobody likes to be the worst in the whole country for something. So we kind of we did capitalize on that a little bit. But you just you have to work with every every different component, and you have to understand how changes can get made. So I mean, with if the Health Minister really cares about something and says, hey, look, I've been getting all these emails and phone calls from these diabetes people like what is going on? She will direct her staff to look into it. And and then the civil service experts will look at the studies and look at the research. And that's a whole nother problem that we have, which is they'll they'll only consider certain types of studies they prefer they prefer clinical trials. I guess they're What are they called? Like the double blinded kinds, right? They prefer that kind of review. They they don't prefer to look at what they call real world studies that are more retrospective. Yeah, they're harder. Yeah, so. So another thing that we did, like, we managed to get some meetings with the civil service as well. So then you're talking to clinical analysts, and you have to speak their language. So we were, we were looking at studies, and we were poking holes in our own governments, reviews of the technology we have in Canada, a body that is kind of more more federal, that's supposed to help to not have to duplicate the work so that each province one at a time doesn't have to look at all this stuff on its own. So so we were looking at the federal review of the technology and saying, like, Hey, you know, it was published in 2020. But when you actually go and look at what they say they're talking about, they're talking about other meta analysis of multiple studies. And when you go back and look at when those studies were published, some of them are from like, 2006. Well, which which version of Dexcom were we using in 2006? Yeah, like, yes, it was a lot more expensive back then. And much less accurate. And things have really changed. Now how about we look at a study where the data was actually collected in 2018, using a much more more recent version of a CGM, and look at those results. So we we did things like that, and the civil service, folks, they seem to be very appreciative, I think, for that sort of help, because they're, they're looking at new new drugs and devices all the time. And it's a lot of information to go through. And I think I mean, I think it's reasonable that if you have this federal body that has written a report, and someone's asking you, well, what about this CGM thing? And you go and you look at that federal report, and it says, not that great. Not sure if it's worth it? Well, yeah, I mean, what what decision Are you going to make, but if somebody can come and help you and say, Hey, like, these are the reasons why that federal review is not actually that strong. And why don't you look at this and this and this instead? It's easier for them to make a better decision, I think,

Scott Benner 52:44
yeah, I wonder if I wonder if there's not a way to think of it more like a marketing problem to like, could you, you know, if you were a CGM company, like, could you go into an area and just pick, I don't know, 50 or 100 people and put them on product, and not even help them with it, just put them on it, and then gathered their data for six months, and then gather 100 people's data that don't have the the ability to see their blood sugar for six months, and just see if you can say, look, this was beneficial here and give them a questionnaire about their stress, lifestyle and stuff like that. If that wouldn't be an easy way to turn to people and say, Look, this is what we found, as a matter of fact, for anybody listening in a company, that's a great commercial, you know what I mean? Like that would be key. Imagine a 62nd ad where you you saw that break down very quickly. You know, these 100 people did this, these 100 people didn't have it, here's the outcomes. After six months, everyone living with diabetes would understand that every endocrinologist would understand that.

Trevor 53:42
Well, that's that's been done. really mean nobody cares. Well, with the with the libri. In Europe, that was exactly what happened. But it was done on a on a huge scale, because they started to have federal coverage for those devices, right. And so what libri did was it looked at Okay, like in the year before people had this coverage, what was their rate of decay? And, and severe hypoglycemia? And in the year after, how did that change, when people got coverage, and the reduction in DK was about 50%. And it's looking at a huge sample size, it was like 70,000 people in France. And so this was the kind of thing that we were bringing to the civil service saying like, Look, look at this study. It's a it's a massive sample size. They've already done it over there. Like they just decided to have this coverage. Why wouldn't we want this here? And how can how can we ethically keep doing this to people when we know what a huge difference this technology makes? And and yet, after the budget, drop The age 25 cut off when we would go back and talk to the politicians like, why age 25? Why did you do this, they would still be talking about cost, which tells me that they they still don't fully understand the cost savings argument like even if they don't care about people's kidneys, even if they don't care about people's quality of life. If we can just talk about the dollars here, DK a and treating it in a hospital is really expensive. And that's a short term emergency,

Scott Benner 55:34
but it's the problem. Trying to put myself in their shoes is the problem that that money for DK is going to places they want the money to go to. I hate sure you don't I mean, I hate them boil it down. I hate to boil down people's health into such like cold ideas. But if I'm the politician am I sitting there going look, DK is much more expensive than putting somebody on a CGM. You're 100%. Right. But in column A, we're giving the money to the CGM company. And in column B, we're putting it into the hospital that hires doctors and nurses and people to clean the hospital. And we're keeping the machine moving this way.

Trevor 56:10
like Oh, sure, like it's I mean, yeah, I think just that it's a different pot of money can be a problem, because the people that run the drug plan, they look at the costs of the drug plan. And maybe they're not looking at the costs with associated with the hospitals. I mean, we also keep trying to point out to them, that right now, like this is an emergency, it's urgent. And now is not a good time to have people going to the hospital when it could be avoided. So if there's anything that we could do to keep people out of the hospital, that would be great. Like, actually, as of yesterday, Manitoba now has has the highest per capita rate in North America, of new COVID infections. And also yesterday, they transferred three ICU patients to a different province because the ice user full here,

Scott Benner 57:09
Trevor, maybe show up instead of trying to fix Manitoba and might be underwater. What are we talking about? Yeah, yeah, it's, it's pretty scary. Um, yeah. Well, I just, I mean, maybe you repurpose people. So instead of saying, look, we need you to get sick, because that's how nurses and doctors and hospitals get paid. Maybe you could turn nurses and doctors and hospitals in the people who showed you how to put on your CGM and how to read it and how to make better decisions. Like, you don't I mean, like, why is there? Yeah, it just listen. It's obvious, like worldwide problem, right? We attack problems after their problems, like being proactive is not anybody's strong suit.

Trevor 57:49
Right? Yeah. Yeah. Well, I mean, like, right now, we have a shortage of nurses, we obviously have a shortage of space in the hospitals. So I don't think that it. I don't think that anybody's even saying like, you know, that's how nurses and doctors get paid is by people going into DK. That's the I don't think that's really an argument here, though. I may be a little different from how it is in the US in that regard. But, yeah, I think those resources could be spent on training people on their insulin pumps, and yet teaching people how to use the CGM.

Scott Benner 58:30
Can you talk for a couple of minutes about the overall attitude that you guys used? When you're undertaking this? Because there are a number of, you know, patient advocacy, things going on all over the world. And every one of them is, is not just well intended, but needed. But some of them their messaging, you can you hear their messaging, and you just think that's not going to go anywhere. Like, no one's gonna listen to you when you're talking to them like that. And I and it's not even that the message isn't, isn't deserved. You know what I mean? Like, I'm not saying that, like, I'm on the side of the person saying the thing. I just think as a, as a person who's standing back watching it happen, I'm like, I don't think that's how conversations like this get anywhere. But how did you actually like so you did all these things. But they worked. And that's and what do you attribute that to?

Trevor 59:27
I think it was really the collective action and the coordination of so many people. So many people were writing to their MLS and emailing and phoning. And so it wasn't just a meeting with the health minister, but it was like every, every person in our group with type one diabetes or who is connected in some way to type one diabetes was trying to get a meeting with their own MLA and also phoning the health minister. So we we had many many meetings. With different MLS, and then when they're all hearing similar messaging about why this is so desperately needed, then I think when they do have those moments in caucus, and they're together, and one of them says, Hey, you know, I keep hearing from from people diabetes, it's like really a problem. And then somebody else chimes in Yeah, like, yeah, I, I've been hearing this too, right. And they, they all started to get education around it, we we've always tried to focus on the education aspect of it. And with each media event, we kind of chose a different topic to educate around. And there, there's so much it's like, it's almost endless, like you, as, as you know, very well, you can keep talking and talking about different aspects of diabetes. And we just kind of kept hoping that eventually, they would understand enough to want to take that action. And we also, we also focused specifically on members of the Finance Committee, because even when you've persuaded the civil service, and you've persuaded the health minister, then if the Health Minister eventually comes to the finance committee and says, look, I'd like to do this, but we don't have quite enough money for it. That's where it can die. It can die if the finance minister doesn't understand how important it is, for what I need to understand

Scott Benner 1:01:27
those when you come into those meetings. I mean, that's amazing. But you're not. I'm guessing, yelling. You're not saying Oh, you're like it's coming from like, you. Listen, I'm not trying to denigrate anybody. But you know what I'm talking about. Right? Yeah. Okay. So

Trevor 1:01:44
So yeah, no, I think I think we always approached it. And we continue to approach it from a perspective of they just don't quite understand yet. But they will, will understand.

Scott Benner 1:01:57
You don't make they're a monster trying to kill you. And you're defending yourself against this charging horde?

Trevor 1:02:04
No, no. And I think that positive attitude, really helped with our events. At each event that we hosted, we've managed to get people to attend from each political party, not just from the government side, and not just from the opposition, but all of them. We have three political parties here in Manitoba. So that that really speaks to you know, if if you've got politicians from all sides willing to be seen with you in public, that's a really good thing, like you want to, you want to aim for that to, to not to not be so abrasive that, that people are just going to be scared to actually be near you in public that the way this you don't want to, you don't want to do that, from what

Scott Benner 1:02:53
I could see from the outside and the way you guys handled this, and I realized it's a big effort. It's one of the great reasons I wanted to have you on because you, I mean, you didn't kill them with kindness, right? But you just you came at them. Constantly, intellectually, constantly, data constantly with, I know you have a problem to fix, here's how you can fix your problem and fix our problem. And it never felt contentious. And it never felt like I'm sure you were, you know, frustrated behind the scenes and everything. But in the moment at the events, or in any of your Ford messaging, it was always very positive. And I just think you don't I you know, like, Listen, somebody could be as wrong as wrong could be you running up to them and yelling, you're wrong. And I don't like you. And why do you hate me is not the first sentence that ends without and we worked it all out later. It just it doesn't go that afraid. You don't I mean, so. To me. Yeah.

Trevor 1:03:54
I mean, I think I guess we focused a lot on personal stories. When when we had meetings with MLS or with the health minister, we tended to open with personal stories. One of our members has a kid who experienced a lot of seizures before getting a CGM. And now seizures are no longer a regular part of this child's life, which is great. So she, Liz, you have to tell your seizure story in this meeting that we have coming up and she's like, yep, okay. All right. I'll do I'll do that again.

Scott Benner 1:04:34
One more time, just so we can get Manitoba squared away here. But, you know, I think that if you're obviously you're looking to expand it past the age of 25, which is clearly obvious, but I, you know, if I had, if I could make a wish for you, I would wish that that you'd go back to those people who you've already whose minds you've already changed and ask them to put a little effort into contacting an official in a different province and explaining to them what they've learned. Because maybe you could get that like spread effect that way. Because you've already got you've already built more warriors. And they're prepared. They know the whole story. And if they were just to call a colleague and say, Hey, give me 20 minutes, I want to explain something to you that I've figured out here. And just make you aware of it. But that would, to me that would, that would be how you how you make it spread across Canada? Yeah, seems obvious.

Trevor 1:05:32
Yeah, definitely. I think so. And I think also, I would love to see less of the burden of this placed on patients who are dealing with this chronic disease every day, which is already plenty to do. I would love to see more people who are not actually living with Type One Diabetes, trying to do what they can to help.

Scott Benner 1:05:56
Well, now that we're on Star Trek lined, man, I

Trevor 1:05:59
don't know, but you know what, some people did that for us here. There. There were phone calls made to our premier from other provinces. And I I'm sure that that really helped.

Scott Benner 1:06:11
No, I imagine what's an MLA I realized an hour into this isn't the time.

Trevor 1:06:17
That's a member of the Legislative Assembly here.

Scott Benner 1:06:20
I just assumed everybody heard government person when you said that.

Trevor 1:06:23
Yeah, yeah, totally government person. That's what it is. But you know, we haven't talked about our ridiculous insulin pump process at all yet.

Scott Benner 1:06:31
Well, can we make sure that we do? Yes. Can we end with that? Because I'm, I'm on such a strict time schedule today. So yeah, I'm not gonna, I'm not rushing you. But let's, uh, let's button up with that. So I, the best I can tell you is that my interactions with Canadians happen mostly, you know, over the internet. And I hear a lot about we can't get a pump. We can't talk somebody into something. That's not how we do things here. You know what I mean? Nobody wants to hear that. It's a lot of that old timey. Like, it just feels like you're managing diabetes in 1983. And yeah, and that's the direction you're getting. But what happens specifically with pumps?

Trevor 1:07:12
Yes. So here, it's, I think, again, it's one of the one of the most difficult parts of the country to get an insulin pump. And I haven't exactly been able to figure out the reasons for that. Maybe it's just because they don't want to pay for them for that many people. But again, I think they're spending a lot of resources on barriers. So for one thing, you have to have three a one C's in a row that are under 10%. And, and of course, they have to be at least two or three months apart. So if you're, if your kid has a flu, or just a really hard couple of months, and they get an A one, see that's 10.2% then they fail that and they have to start again from the beginning trying to get those three a one sees in a row. Under 10%. Yeah.

Scott Benner 1:08:05
So for clarity, you have to take something that you're not getting good direction at, you're getting kind of lousy insulin from and no help. You're struggling with it, which is why you're asking for the pump. But before you can have the pump, you have to prove that you can be good at it without the pump, which is the whole reason you're looking for the pump. Exactly. Ah, yeah, that's more gene. You know, I have to say, I think that pretty Prime Minister has me fooled. Like I see that big smiling face and I'm like, everything must be terrific up there. And then I imagine just, you know, Mounties riding polar bears. And I'm like, Canada, you know, and it sounds like maybe it's just like everywhere else.

Trevor 1:08:48
Yeah, there are some big challenges here. We have a really unique and special one in Manitoba. I haven't been able to find that this exists elsewhere, actually. And I would love if you've heard of this happening somewhere else, please let me know. But after you've got your third a one c under 10%, then you have to do a psych assessment to determine your insulin pump readiness. And the first part of that is his paper survey pages and pages of it. And I mean, when when we were trying to go through it, our kid was eight years old, and he couldn't even really like his reading level wasn't good enough to read some of those questions. And they were really bizarre. They were asking things like, if he was worried that his type one diabetes would affect his chances of getting married or his chances of getting a good job one day. The kid had to fill out the paperwork he was supposed to, but I mean he couldn't really so we can get with him one time

Scott Benner 1:09:58
in my early 20s I had the option to go to a girl's house to have sex, but I had to get gas first. And it seemed like too much work. So I didn't go. So I'm trying to imagine people at the end of their day, at the end of their week fighting with this diabetes had like, Oh, now I gotta fill out this giant survey full of questions that I, my eight year old couldn't possibly know the answer to your eight year olds not thinking about getting married. Are you kidding? Oh, my God, right? The gas station was not far from our house. I just want to be clear. I was like, we could do it Saturday. Beautiful girl, lovely person. I'm not saying anything about her. I'm just telling you, it's hard to at the end of a long work day, it's hard to it's hard to do more stuff. And then they

Trevor 1:10:51
imagine that being attached to whether or not you get this really expensive item that you're you're pretty desperate for. And so instead of answering those questions, honestly, which I mean, some of them may be relevant. I guess, like in the psych survey, instead of answering those Honestly, I think what you end up doing is saying to yourself, okay, what do I need to write down? That they will feel like is the right answer is I don't want to fail this and make it so my kid can't get a pump. Right, right.

Scott Benner 1:11:23
Oh, no. I mean, listen, that's just human nature. I had to take Arden to a doctor's appointment a number of weeks ago, having her wisdom teeth out. She just had to go in for a, you know, first look, and then handed a piece of paper, and it was a COVID thing. Now luckily, all the questions, you know, we could answer honestly. But I just thought to myself, if I went to all the trouble of driving here, and I didn't really think COVID was, you know, I was maybe on the fence about caring about it. Wouldn't I just lie here on this paper like this paper is not, it's not really a good way to get the truth out of me. And and then when that becomes the issue, to me, in my mind, I think what is just take the barrier away then like, why are you asking people questions about an answer? They want an insulin pump, they have diabetes, give it? What is your

Trevor 1:12:07
Yeah, what's your point? In in, in our case, our son was really struggling with needles and with eating food. He was at a point where he, you know, we would be like, Matthew, do you want an apple? and apples are one of his favorite foods? And he just go? No, cuz he didn't want the needle? Yeah.

Scott Benner 1:12:29
You're not asking if he wants an apple. You're asking if he wants a needle?

Trevor 1:12:32
Yeah, it was so sad to see that. And when when we realized how how long it would take us to get through this process. Because after the paper psych assessment, then there's an in person psych assessment. And then there's the clinic assessment. And then you can go on a waitlist to get an insulin pump. And then there's pump training classes. Like it's just it, there's so much ridiculousness, and when we realized that it would take us another year, and we were looking at our kid who wasn't eating normally, what we did was we went to North Dakota, and got him started on an insulin pump in like a day. Were you

Scott Benner 1:13:13
able to do that? Because your accent sounded similar, and they thought you were from?

Trevor 1:13:19
No, I mean, we were able to do that because we have the financial privilege that our family can do that i right now, I understand. But a lot of people can't obviously, right. So

Scott Benner 1:13:31
yeah, I was gonna say while you were explaining this, this is the three a one season a row followed by the paperwork, followed by the in person followed by this. I was like, this is a year, year and a half we're talking about here if if it goes right, yeah, yeah, if you stumble, you imagine you get two in a row. And on the third one, your ad agency doesn't come back. Right. You're now nine months into you get to start over again.

Trevor 1:13:52
Yeah, I mean, I know a small child that that happened to share in it. It took them almost three years to get a pump and they like that family was trying so hard to get through all those hoops and they just couldn't do it. Yeah, I'm gonna

Scott Benner 1:14:07
go out on a limb and and use a word that might people might not think fits here, but that's an atrocity. Like, that is a that is a that is a human rights violation to treat somebody

Trevor 1:14:17
i i agree. Yeah, I think that's that's the right word for it. That's just and and I mean, we have to go through a psych assessment, where it's like, yeah, I mean, this diabetes stuff and heating needles. It is it is giving me some, some mental health challenges here, like things are not okay. But for some reason, I have to pass this mental health assessment first, to get the thing that could help improve my mental health

Scott Benner 1:14:49
and not for nothing. What does any of that have to do with getting an insulin pump? Can you see one relation? Yeah, I don't see one relation to what you just explained. And an insulin pump. I mean, if you will make me go through that to get a machine gun, I might be like, Alright, well, that makes sense, you know, like or something but but to get an insulin pump, like a thing that's just going to, you know, give me my base is what it makes me think is, is that this is this old thinking again, like I've had enough older people who have had diabetes, like for decades tell me this, that pumps used to be considered a thing that you would put on somebody if they were just ignoring their care, because then at least they'd get their Basal insulin from the pump. So you were thought of as a problem if you need a pump at a certain part in history of insulin pumps, and maybe they're just stuck in that idea.

Trevor 1:15:44
I don't think that's quite it here. Because, I mean, if that was the case, then the kids with those super high Awan C's, they would be put on an insulin pump, right? But that's not what they're doing. Well, no only but the best clients on it.

Scott Benner 1:15:59
I'm saying it's letter, the letter of the idea. It would be that way. But I'm saying maybe over the years, it's morphed. Maybe it's just the remembrance that proper, you know, quote, unquote, problem. People got insulin pumps. So we have to prove you're not a problem before you got it. Like, I don't know, I see. Like it maybe you know how some things get commingled after decades. And you don't know why the hell you're doing what you're doing at this point. Like, if you pulled a person aside out of this and said, Why are you doing this? I know that I know, I would bet everything I had, they wouldn't have an answer. They might not know why they're doing it.

Trevor 1:16:32
It reminds me a little bit of psych assessments for transgender people wanting to transition. I am trans myself, okay. And when I when I wanted to transition and wanted access to medical transition, I had to pass a psych assessment. And at that time, what people would do is we like we would get together in our support group at at our local center for that, and people would talk about like, Okay, what do I need to say to the psychologist? And if I say this, will that set me back a year? If I say that, will she just wave me on? Like, how does this work? And so you just you try to figure it out? And and it seemed like what they wanted to check for was, does this person have some sort of mental health issue going on? That That means, you know, we should address that first, before letting them transition, not acknowledging the fact that your depression or your struggles, could could very directly be related to the fact that you haven't been able to transition? Right? let's admit, it could get a lot better. Once you do,

Scott Benner 1:17:52
I could understand that question coming into a person's mind who's never considered transitioning? Like I could see a person having that thought, I can also see that they, I could also see that there might be bad actors who just think, well, I don't agree with this. So let's prove that they shouldn't be able to do it. Like I can see bad actors and good actors and the same thing. But here's the end of it. I have to bleep this out letter later, Trevor, but who cares what you want to do? Like just like, Who cares? like and what other walk of life? are we stopping people from doing what they want to do? I see people pull out teeth, that they that are completely healthy, because they want their smile to look differently. We're gonna make them go through a psych evaluation for that, like, it's, it's your life.

Trevor 1:18:35
Yeah. Right. And I mean, that's like, it's been changing for trans people, a lot of clinics have been changing more to an informed choice kind of model that's like, Do you understand what this medication is going to do that you want to take? Yes. Okay. Like you can make that choice. And, and so I think, too, you know, to tell a person who's having a lot of trouble with needles, that they need to have a psych assessment first and discuss their trouble with needles before he'll let them have an insulin pump. So they don't have to deal with so many needles, it, it just doesn't make any sense.

Scott Benner 1:19:11
You want to sit next to that person every day. And every time they put something in their mouth jam in the arm or the needle.

Trevor 1:19:18
Right? Yeah. And I think that's that's another point. Like, they don't have that experience. They don't get it. No, I know. We, when right when my kid was diagnosed, we were offered an appointment with one of the psychologists just to talk about things which I think like that's great to have that support. It is a it's a big thing to deal with. And that's really nice that a clinic would have a psychologist to talk to right. But unfortunately, the psychologist just didn't seem to know anything about living with diabetes. So one of the things that my kid was talking about in this appointment was how awful he feels when his blood sugar is really high and Just the terrible physical feeling of that and, and that it also made him feel really angry. And he actually described in this appointment that he did something kind of inexplicable and really mean to his sister on a day when he was having a super high blood sugar. And it was it was just soon after diagnosis. The psychologist said, Well, I thought that wouldn't have anything to do with your with your high blood sugar at the time.

Scott Benner 1:20:27
It just all person online, their kid broke their arm. And they started explaining to the doctor that you know, they had to use more insulin because that's how they knew the arm was broken. Because their insulin needs went up, they realized there's something wrong with the arm, the doctor, and this is going to fry your mind, Trevor, who had Type One Diabetes told them that that would not have an impact on your insulin use.

Trevor 1:20:50
I think I saw what I can't understand is like, how could a doctor who has type one diabetes not have ever seen that in in themselves?

Scott Benner 1:21:00
So let me move the microphone a little farther away from my mouth for a second because everybody's idiot. That's why Okay, so that you you've a bunch of people, we're all trying to pretend we're something and doctors do the like, I know everything you can't like I'm infallible like and I get why they need to feel that way. I almost do understand it. But But the real message isn't fixed doctors. The message is control your own life. Like I have an I have to go in a minute. But I have a horrible feeling thinking of you sitting in a doctor's office, while your kid is explaining how they feel with a high blood sugar and how you must feel in that situation. Like

Trevor 1:21:40
Yeah, like, well, and what I did after that appointment is I was I just decided, you know what I think I want to hear from adults who live with this disease. And after that point, I just focused on that, like I read books written by people who actually have type one diabetes. And I that's also what I appreciate so much about the podcast is listening to people's actual experiences. Because when you live with it, you know, like you know how you're feeling and you can look at your CGM and take out the medical

Scott Benner 1:22:13
middleman is what you end up doing. Yeah, so that the message doesn't get truncated on the way to you. Or it completely blocked. I mean, if I start talking about how upsetting it is, for how many people I hear back from or like, found the podcast, listen to it, put things into progress, I really started to understand it started to work out went into the doctor's office super excited a once he was six got yelled at. That's terrible, we'll get

Trevor 1:22:42
that so sad. And I think I mean, for, for my kids, I've tried to make it a learning experience for them. To understand that, you know, we we went to this clinic in Manitoba, it's the only clinic for children with type one diabetes, and it really wasn't working out. And so it's okay to go somewhere else and find somebody else. Like, you don't have to stick with that. That one doctor. I mean, here, it's, it's really hard because there isn't another local choice. But I am glad that at least for my super privileged kids, they were able to see, oh, well, we can just go see a different doctor. And that person does click with us does does make sense. She was so happy for my kid to get an insulin pump when he needed one. And she's super supportive. And, and she's very happy with his a one C and timing range and all that stuff. And so that's the right choice for us. And I think people have to realize, you know, any doctor can can be wrong about stuff. They're a human being, and maybe they haven't kept up to date the way that they should or didn't learn what they should have in school, or whatever it is,

Scott Benner 1:23:58
you have to trust your gut, because you might live in Manitoba, your own version of Manitoba somewhere too. And as Trevor told you, 45 minutes ago, a lot of people who live there who have diabetes end up in renal failure. And so, you know, take care of yourself, you have to like you can't just sit there going, Oh, the guy said it's alright. You know, like it just if you don't think it's all right, it's probably not all right, if you don't have the answers, go find them somewhere else but do not keep going back to a person who tells you uh, you know, who's you know, sticking their finger up your nose and smacking the side of the head and going on being nice to you? No, you're not.

Trevor 1:24:38
I mean, like, I get it, it can be very hard to do that. And I don't blame somebody who of course maybe hasn't felt confident to do that. I'm like your your kid is diagnosed, they nearly died and the people in the hospital saved. At that point were perceived yourself if you were diagnosed as an adult in decay and so it's it can be hard to kind of move by Their initial advice and figure out what else there could be out there.

Scott Benner 1:25:06
It's a difficult it's a difficult transition to make from. This is the person who saved us to somebody just like that person seems to not understand what we're going through. Trevor, I hate to do this, but I have to go. I'm having a great time. And I would definitely keep talking. But I am literally going to say goodbye to you and then take a drink of water and record something else.

Trevor 1:25:29
This has been awesome. I really love talking to you. Thanks so much for having me on the podcast. It's my pleasure. I

Scott Benner 1:25:35
quite enjoyed it as well.

How about Trevor? Just getting into the fight swinging with both hands, huh? Really amazing story. Don't miss there. Don't miss Trevor's blog post Juicebox Podcast calm either. If you're listening on day one, two or three, it's probably right on the front page right now. Just head over there. And take a look. Thanks also to Dexcom Did I say thanks to Trevor? Because then thanks also Anyway, thanks the Dexcom makers of the GS six continuous glucose monitor and Omni pod makers of the Omni pod dash tubeless insulin pump find out more dexcom.com forward slash juice box head over and get started right now. And see if you're eligible for that free 30 day trial the dash add on the pod comm forward slash juice box

thank you so much for listening. Thanks for sharing the show a few bought me a cup of coffee at buy me a coffee calm. I mean, thank you, thank you, thank you, we're actually going to be new members that do that will get their name mentioned when they start their membership. There are some people who bought a level of membership who will get mentioned at every show. Have was um, I couldn't believe that anybody did that. But anyway, no matter how you choose to support the show, I am very grateful. I'll talk to you soon. I'll be back with another episode of the podcast before you know it. Couple sleeps and there'll be a new one waiting right there for you in your podcast that you are subscribed in your podcast app right please, please subscribe in your pockets that I say I should say something like if I lived in Canada now.

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