#503 Manitoba Strikes Back
Scott Benner
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.
What is your blood sugar doing right now? Is it rising or falling? Is it playing nice and staying stable? What Number isn't that I know my daughter's with a flick of a florist for the flick of a flick the flick of my finger I open up my iPhone lickety split, Arden's blood sugar is drumroll please 92 it's actually been incredibly stable at that number for about the last 55 minutes. Prior to that, it was a little lower at 75, I can actually see what rate it came up at. It's amazing Dexcom that's how I know I have the Dexcom g six continuous glucose monitor. On my daughter right now she is wearing it. And it is sending her her blood sugar on her iPhone and me on mine, she could actually share it with up to 10 people. And those people could have an iPhone or an Android or a mix. Right doesn't have to be anything specific. It's whatever you're using. Imagine being able to see the speed and direction of your blood sugar in real time. It's astonishing. The Dexcom g six is a triumph. It is a leap in how people take care of diabetes, absolutely imaginable. Learn more@dexcom.com forward slash juicebox. Actually, you can learn more or get started with Dexcom gs six today by going to that link. The Dexcom is that the core of every decision that we make about insulin, and about carbs. It is super simple to use. It integrates well into your life. It does what it's supposed to do in a way that just makes things better. That's my opinion, but I think you'll find the same. Another thing that I love is the Omni pod, your omnipod.com Ford slash juicebox. When you get there, guess what? Guess what you might find out when you get there, you may find out that you're eligible for a free 30 day trial of the Omnipod dash. Take that pot out for a test drive my friend for 30 days match if you want to test drive a car and then like bring it back next month. You'd be like legit, okay, that's what all the pods doing here. On the pod comm forward slash juice box, no tubes to get in the way. Simplify your meal times, no more multiple daily injections, head over check your eligibility and your coverage. This could be the beginning of a summer for you like no other swimming, bathing, running, jumping, frolicking a tumbler salt, which I believe is called a somersault. You could do that. And you're like, well, needles wouldn't come flying out of your pockets. And if you had like a two pump, the controller wouldn't come flying off. Like I imagine a somersault with a tube pump could lead to the pump being wrapped around your neck multiple times. And probably when the tubing gets a little shorter Is it like zings around your neck, like, you know, when you used to take the swings, and you hit them up really quick. You know, I mean, you'd get the swing when you were a kid, you throw it really hard to wrap around the hole. That's how I'm seeing the pump, you wrap it around your neck, you do a somersault and and then when you know what happens when the tubing gets short enough, it just the thing just smacks right in the head. So anyway, with on the pot, that wouldn't happen. That's pretty much what I'm saying. I'm the pod comm forward slash to stop cheese box on the pod.com forward slash juice box, do a somersault don't get hit in the head with an insulin pump. But that's a marketing campaign. You're welcome on the pod that extra bit there that was free links in the show notes links at Juicebox Podcast comm let's get back to Trevor.
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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