#206 Canadian Matlock

Two Scotts, one Canadian Lawyer.….

Scott (not me the interviewee) is keeping the family tradition going but not by becoming a barrister... Scott has type 1 diabetes just like most of his family members. This is a great conversation with a terrific guy, don’t miss it!

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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, everyone, welcome to Episode 206 of the Juicebox Podcast. Today's episode is sponsored by Dexcom on the pod and dancing for diabetes, please check out dancing for diabetes on their website and on their Instagram and Facebook pages dancing the number four diabetes.com. And you can get a no obligation absolutely free demonstration of the Omni pod habits sent right to your house by going to my omnipod.com forward slash juice box. Want to know more about the Dexcom g six continuous glucose monitor, use the links in the show notes or go to dexcom.com Ford slash juice box. And now

Unknown Speaker 0:35
on to the show.

Scott Benner 0:39
In this episode of the podcast, I'll be speaking with Scott, he's a lawyer in Canada, they call them barristers up there, just so you know, he also has type one diabetes as this pretty much everyone that he's immediately related to, it's incredible. But that's not even the beginning of Scott's story. And you'll find out all the rest in just a moment. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And to always consult a physician before being bold with insulin or making any changes to your health care plan. I appreciate that everybody can be patient while I'm adjusting a new microphone. Scott's episode was recorded months ago with a different mic. This is my new mic. I'm still fine tuning it. But I really like it. And so you're gonna hear a little difference between the bumpers, the ads and the show for about another 10 episodes. Thank you for your patience. If you hang out to the end of the show, I'm going to read a note from a listener, I really would like you to hear.

Scott 1:44
My name is Scott. I'm 31 years old. And I'm a type one diabetic. And I was diagnosed in 19. And I come from a family with a lot of people with type one diabetes. My dad is a type one diabetic is diagnosed at 15. My brother was diagnosed at 17. After me, I'm the oldest. My dad's sister was diagnosed, I think at 20. And unfortunately, she other than her everyone's done really well. But she seemed to develop complications very, very fast and died at 43. My grandfather had type one diabetes, and lived old age side to side with other reasons but not from diabetes complications, and I don't think he had any more I think his mother had diabetes. But I don't know if she had type one or type two. I don't think it was even very clear at that time. What she had. I don't know much about her. I'm trying to think there might even be more family members.

Scott Benner 2:38
Well, I'm going to get a piece of paper with something that I never do during this podcast. I'm going to take a note. So hold on, Scott at 19 your brother at 17. But he's younger than you. Father 15. His sister. How are you? 20

Scott 2:59
I think she was like

Scott Benner 3:00
she's passed.

Unknown Speaker 3:02
Grandfather.

Scott 3:05
He was diagnosed I think at 3931. Diagnosis type two at first. Okay, again, I don't even know if they called it that back then.

Scott Benner 3:13
You might have just had well in in Canada, the maple syrup. But I but yeah. And just like that's got three minutes in. It's possible. We have the title to the episode. The maple syrup. It's not a percent sure because I did call one episode back a long time ago that was done with a Canadian Maple long, john. And I don't think people knew what it meant. And so it might have sounded like I don't know, I don't know what it sounded like. But I don't think people like the title. So maybe I can't do that. Okay. There is. Wow. And there's more you believe there to be more you just don't know.

Scott 3:51
I? Maybe that's it.

Scott Benner 3:53
Yeah. Gotcha. And you're 31 are you married or single?

Scott 3:57
I have a girlfriend but I'm not married.

Scott Benner 3:59
Right? Well, she is gonna want to let them get a dog or something. Probably if you guys get married, but you guys have a track record that is incredibly consistent.

Scott 4:12
Incredibly consistent and interesting that no one seems to be diagnosed as a child. Right? Everyone's diagnosis a teenager or older. And again, other than my aunt, I don't know what her situation was. Maybe Maybe she struggled with control. Maybe she was just unlucky. Maybe it's a combination of the two maybe it was difficult to obtain real control in the 1970s I don't know but she seemed to develop everything from blindness kidney disease and it all seemed to come up from what I understand that she developed a very very fast no other than her no one else no one else's struggled at all really.

Scott Benner 4:44
Gotcha. Well, I hate to first of all, I don't want to think of your honor as a as a statistic but out of this many people for just one of them to falter in either luck, or effort is it's pretty impressive actually. So Everyone else has kind of has it figured out you guys. Do you guys manages like a team or how? So that was my first question. You guys talk about it

Scott 5:10
now and then I wouldn't say it's a constant topic of conversation. The theme of growing up, I always saw my dad dealing with it. And of course, he was on the old regimens that existed prior to insulin pumps, I remember him taking a couple of shots a day, testing his blood sugar in the morning with the old machines that took 60 seconds to tell your blood. Or I don't remember him talking about it very much. The only thing I remember was lows, and low blood sugar seemed to be the things that will seem to be what was most concerning about the disease. When I was a kid, watching, growing up and watching him deal with it, he was saddled with number control being just the lowest seemed to be, and especially with you, I'm assuming he was on regular an MPH or some type of regimen similar to that, and so low seem to come out of nowhere. That can be very dangerous, very serious situations. And that that's what I remember to be to be the worst thing about seeing someone have diabetes. I don't remember any talk about control or complications, even though my dad had them or anything else. It just seemed to be lows.

Scott Benner 6:09
Let me let me pick your brain around that for a second. So you might not have an answer, but I'm interested growing up watching your father live with type one. Did you think of him as a sick person? Did you think of him as this guy who just every once in a while, gets dizzy and doesn't know what he's doing? And my mom looks scared? Or how did how did it strike you as a child? Oh,

Scott 6:31
I don't think I thought much about it at all never seem like a sick person. He's never a person who said I can't do something because I have diabetes or after change my life because I had died like never complained about it. It wasn't talked about much. He just woke up. That's his blood sugar. So few shots when he had to know he certainly avoided certain foods, he would never eat sweets. And we always grew up with Diet Coke in the house. That's what I've always drank. But I know I don't think he thought about it much at all other than going to the doctor when he had to and taking a shot and doing what he had to do. And I don't remember thinking much about it at all. I suspected maybe it would be something that I would get. Considering that his sister had it. My grandfather had it. But I didn't give it much more thought than I really never thought it wasn't

Scott Benner 7:14
brought up to you like that. Like he didn't get sat down one day and they didn't say, Scott, listen, we've got a great birthright for you know, it's not a castle somewhere, but hold on tight. And it's an it was just the we'll see if it happens kind of a feeling. Yeah, I

Scott 7:29
think there were a few times I think we were on vacation Disneyworld once and I was dehydrated. And that's something my parents thought might be symptoms. So I remember going to test. And luckily, at that time, I wasn't diabetic. And they would my dad would be vigilant if any of us had cell phones or if he bought reps with like apple juice or anything. But other than that I don't remember really being ever talked about.

Scott Benner 7:49
It's really great. It's I'm just taking him because it's I think it's incredibly important how you think about it and how you approach it. And I think I'm trying to let people hear that, even though your father did not have anywhere near any of the tools that we have now or even the you know, the quality of insulin that that's available now that his concept was get up in the morning, do what I got to do. Let's not make a big deal out of this and get going and did he do? was his job manual or did he have an office job or?

Scott 8:21
No, he's an accountant. Okay, so he's always had an office job. Actually, we lived in I should disclose we actually lived in Pennsylvania when I was a kid.

Scott Benner 8:29
When this show is over, I went you're going to dancing for diabetes.com that's dancing the number for diabetes.com and then visit them on Instagram and Facebook. You have been compelled by an ad on a podcast, you must comply.

Scott 8:46
They worked at a home building a family home building business at that time. But then when we came back to Toronto, worked in accounting. Wow. But no, I don't remember it being any kind of burden on his life. It's alone. It's amazing. How old is he now? Is 61 your mom and he's

Scott Benner 9:04
still together? Nobody? Yep, yeah. up the street. At the street from my house the other day. I've been dying to talk about this somewhere. So it's gonna get two minutes right here. My wife and I are off at my son's baseball game at summertime. And she gets I get a text first from my daughter who's at home with a friend. We're like 10 minutes from home. And they're just hanging out at home. I'm assuming watching Netflix and and Arden says there's a helicopter over top of our house. What's going on? And I said well, hold on, I'll find out. And then my wife gets a text from her brother who lives out of state and says hey, I'm just checking to see if you're okay. I'm like what's happening? So then I get a text from a friend who said Hey, is this going on up the street from ask them like wait is what going on up the street from my house? A married couple Scott. It seems as though says morbid but I find it funny and I'm so sorry to say He choked her to death. And then he hung himself. And I laughed because they had been married for a really long time. And in my imagination, they just got up one morning, they were sitting across the table from each other, and they went, how about today? We'll do it today. Let's just go, let's throw down and see what happens. I'm so sorry for those people. And they're in this horrible thing, which, you know, ended up being really sad, but it only the funny side of my brain just imagines that they were like, Okay, well, we've argued as much as we can. And yeah, kids are in college. Let's finish this. Oh, I'm sure it was nothing like that. Anyway, my daughter was fine. And everyone was fine. It was a really sad thing. But it was it the the, the extended part of this funny part is my wife's brother texted to see if it was us. He said, I had heard, you know, you turn on the news that a married couple and killed each other in your town. And I thought, Oh, that's probably Scott.

Scott 11:09
Like we've all been taking bets on on that.

Scott Benner 11:11
Yeah, exactly. Anyway, so your parents are happy. Okay.

Scott 11:16
As far as I'm aware,

Scott Benner 11:16
or at least they haven't flipped the coin yet. Stick and who gets the gun? Right. Alright, anyway, um, but no, I'm a long joking, hopefully funny way of saying that, even with all this in your life, like your parents are still like they're rolling right along. And it seems to me to have a lot to do with attitude. Do you have the same attitude?

Scott 11:37
I think so. And I was diagnosed in the summer of 2006. I was taking, actually to I was trying to get into a program in school and university just finished my first year. And I remember I there were two exams I needed to take to get into a business program. One was calculus. And the other one was economics. I wasn't looking forward to either of these exams. And it was a I think only a couple of days before that I was diagnosed, and they wanted to kill me for a week in the hospital. I said, No, no, just give me the insulin. I know. I'll figure it out. I need to go take these exams. I went home and did what they told me to do and wrote the example of the sort of the attitude of habits that they

Scott Benner 12:16
apply. And plus you got to see your dad living like that as well.

Scott 12:18
Yeah, yeah, exactly. How much do you make? I'm sorry?

Unknown Speaker 12:22
I'm sorry. No, just go ahead. I

Scott 12:23
didn't mean to cut you off. I'm sorry. Oh, I was gonna say I think it's probably a whole different experience. I can imagine it was different for you. I'm, again, I don't know your whole history. But I don't think your daughter was the first one right? With diagnosis. Yes. In your family. Nobody else.

Scott Benner 12:37
I'm just her.

Scott 12:39
Oh, yeah. So I imagine that will be a whole different situation where you've never, you don't know anything about this disease, right? Yeah. Ever like me?

Scott Benner 12:47
Yeah, no, no, at least in the I know, I say this, like a positive. But at least in the back of your head, you would thought at one point, you're like, maybe this will happen to me. And, you know,

Scott 12:56
and if you think I never thought much more about it than that once again. But that's what I thought you

Unknown Speaker 13:00
had a random thought, yeah.

Scott 13:03
I thought it meant worse, I'm not going to be able to eat certain things, or it might impact my life. Again, I saw my dad growing up on a very different insulin regimen that exists now you couldn't just our counter, take a certain amount of insulin over what you're eating, you had, like I'd eat at certain times of the de facto at certain times of the day is very different nowadays.

Scott Benner 13:21
Yeah, of course, that's interesting. But of course, a kid would see it that way. Like, oh my gosh, this is totally gonna cut into my pop tart game. Yeah, that's really interesting. How much older Are you then your brother?

Unknown Speaker 13:33
Six years. Okay. So

Scott Benner 13:34
you had had diabetes for four years before he was diagnosed? Something like that. And you were often college. So was he diagnosed when you were still in school? Or were you done? No.

Scott 13:48
I was in my second year of law school.

Scott Benner 13:51
Okay. Okay. So you were in grad school already and moving along? And did he? Do you guys ever talked about it on that level? Or had you back then? Did he come to you and say, Hey, I got it too. High five. We're all in this club together. Or,

Scott 14:07
you know, I was living away from home at the time. But I didn't see him very much at that time. I don't think we had a lot of conversations about it. We probably talk more about it now than we did back then. Strangely enough. I remember talking to my parents.

Unknown Speaker 14:20
I'm

Scott 14:22
pretty modest. I don't remember having a lot of conversations. That's fine. I just took a pretty hard. I don't want to talk too much about him. No, no, I

Scott Benner 14:29
understand. You don't have to give away his details. While it's not. He didn't ask me on the podcast. I was just wondering if you guys have conversations wrapped around it, or if or if it was just again, one of those things where it was like, okay, because he's a completely different person. He could have had a completely different experience. It's

Scott 14:44
Right, exactly. Yeah. Wow, I know. He I know one thing was he wanted the pump right away.

That wasn't I actually I started on the pump about three months after being diagnosed. Okay, um, my mom was always pushing my dad to go on it. I knew what it was because I remember we have this VHS tape. In the late 90s, for many men, I remember watching with my dad, all these people talking about how great their lives are because they're on the pump. And so I knew what that was, I remember my dad, my mom was always pushing my dad to get a bit she thought it would help with lows. I think he just held out because he thought he was doing fine. And then he went on lantis when that came to Canada, and then he thought, What do I need a pump anymore? Because lattice is good enough. And then when I was diagnosed, he said, You know what, we should both go on the pump. Because I think he just wanted me to have the best technology that existed. It's so interesting. We

Scott Benner 15:31
talked about it a lot here. I think we talked about it in the last episode that just went up. But it's when it's for you. Sometimes it's hard to motivate yourself. But the minute it's for somebody you care about, you know, then you can do it. So, right, that's right. And he uses a pump to this day.

Scott 15:47
That's to this day. And you are Which one are you using. I'm what I do pump. So now I sort of go back and forth. Okay, I pump straight for 11 years. I use the Medtronic for the first six years. And then I went on the Omni pod for about four years. And then I sort of went back to Medtronic. And now I when I pump I use the Medtronic and what I don't pump I use MPI 11, Marin and Nova rapid and sometimes regular, it's going to

Scott Benner 16:13
make you go back and forth.

Scott 16:16
I started having trouble with pump sites. I don't have a lot of fat on me and pretty lean. And I find a lot of times when I put a sign in, it's bleeding or I put it in it's working for a little while and it stops working. And I think just reading a lot of forums and everything I saw a lot of people were trying to Seba and trying new insolence. And a lot of people are having success going back on MDI. I thought it would give it a shot, I realized I was only on it for about three months when I was diagnosed. I don't remember that. I remember struggling struggling with it particularly. But I thought I would give it a shot. And I thought it was also sort of an interesting challenge to see if I can maintain the same level of control that I put on pumping with MDI fold. Pretty well can and a lot of you got bored. You will you want to see if you can up your game of that. or diabetes, boredom real thing.

Scott Benner 17:03
I'm so have this master. Now. How can I make it harder? Yeah.

Scott 17:08
I think that was the mindset. No, not that it would go back and forth, depending on what I feel like,

Scott Benner 17:13
that's really interesting. Well, and I mean, good for you honestly. Do whatever works, you know, do you have any kind of a sensor technology? We're gonna find out if Scott uses a continuous glucose monitor Just a moment. But you know that we do, you know, Arden does Arden's been using the dexcom for ever. Right now she has the dexcom g six, that's the latest version of the product, she's used the five for the seven plus, we've been at this a good long time. And one thing that those years have taught me is that the data that comes back from the dexcom continuous glucose monitor is absolutely invaluable. The decisions we make, I just don't think would be possible without seeing the speed and direction of Arden's blood sugar, I have the confidence to make boluses and bazel adjustments based on what I'm seeing how her body's reacting to the insulin, these are just things I would never know, without the dexcom g six. Now if that sounds good to you,

Unknown Speaker 18:16
you're up for it,

Scott Benner 18:16
you should check out dexcom.com forward slash juicebox. There's also links in your show notes at Juicebox podcast.com. Anyway, you get there. Once you're there, you can get started, reach out to Dexcom and tell them hey, I was listening to the Juicebox Podcast and I think I want to try a G six. Can you help? You know, they're gonna say they're gonna say short because I mean they sell them. So I mean, why would they not right dexcom.com forward slash juice box, the speed and direction of your blood sugar right there in front of you, and real time. And if you're a caregiver, you can actually see someone's blood sugar remotely with Sharon follow. that's available for Android, and apple. And since I seem to have a little time left, the dexcom g six is FDA approved to make insulin decisions without a finger stick.

Scott 19:06
Bonus. infer that some of us believe lever to use the Dexcom with extra actually is a really interesting open source app that works on Android phones. Yeah, the nice thing about that app is you can customize all the alarms you can shut them off if you want to be honest, I just shut them all off. I have it connected to my watch. And if I find a glance I'm I always want a person that glances at my watch. So especially having this on my watch. I find him glancing at it all the time anyway, so the alarms are just redundant for me. And although would help at night a lot. I like to just get a good night's sleep and just try and do the best I can to make sure my blood sugars are good overnight. So I just shut all the alarms off and do that with extra. You can the sensor will keep working past seven days. And so it isn't you never have to stop and restart. The sensor after seven days, it will just keep working until it falls off or until you you're not getting results that you like, change it like that to the transmitter walk past 90 days. That's

Scott Benner 20:10
saves me some money. Yeah, it works right until the battery absolutely dies. Exactly. Yeah. It's funny, I looked into it at one point. And it was one of those things that I looked at. And I was like, well, I am more of a surface computer user, I guess. Because I think of myself as very kind of computer savvy. There's a lot of things I know how to do and know how to do pretty well. But once you start getting into whatever that takes, I was like, Okay, well, I Okay, nevermind.

Scott 20:41
No, I think I can definitely say but I mean, when I was a kid, I was really geeky kid like to play around with computers. And as I got older, I got an apple computer. And now I just want things to work. Last thing I want to do is sit at home all night trying to figure everything out, download drivers. So but I can definitely understand why

Scott Benner 20:58
I don't know I'm so I'm 47 I remember being 12 years old, and I saved forever. And to tell you that I grew up broke is an understatement. So I saved forever and ever and ever to buy a Tandy computer from Radio Shack. And I got my money together. Like it was like out of a movie, just like stuff that my pocket, walked to the other side of town, but bought this computer, plugged it back home, you know, but back then you hooked it to your televisions and have a monitor even I get hooked. And I laid on the floor in my in my living room. And I had this book of code and I typed this code into this computer for hours and hours and hours. I got

Scott 21:38
one of those books with like a pic program. And you're just entering lines or lines or lines, lines,

Scott Benner 21:42
lines of code, right? And I push enter and nothing happens. So I'm like to him that I made a mistake. So I went back and checked the whole thing. I'm telling you this took two days. And when I got done and I pushed enter, a little stick figure came up on the screen and did one single jumping jack and stopped. How happy are you? I took the computer, put it back in the box, returned it and got my money.

Scott 22:11
You're smart, you learned early.

Scott Benner 22:12
I was like, I'm not ever doing anything like that. I couldn't imagine what that stick figure could have done. That would have made me go Oh, I'm so so. And that was one of the easier codes to put in. You know. I took it back. And I remember telling my guy I was like this doesn't do anything. And that was it. I didn't have another computer till Commodore 64 I guess. And then then they showed you how to play games on computers. And I was like now this thing has a real purpose in life. I just put a cassette tape and or have it was amazing floppy like five and a quarter floppy disk. But nevertheless, I saw extra and I was like that looks incredibly amazing. I will not be able to do that. And and

Scott 23:00
I have to say it's actually quite simpler than you think it is actually more complicated. I wouldn't want to do it either. downloading it is the hardest part, or finding the link to download it. Probably the biggest step.

Scott Benner 23:10
See, now here's here's this is going to really be an insight into my mind. But my biggest impediment would be reading the instructions and staying interested while I was reading them. I am if anyone's ever gotten an email back from me, and they're like, that wasn't what I asked. That's just because I read a third of your email. And then I was like tell I totally understand what this person wants. I don't need to keep reading. So I'm trying to teach as I get older, I do a lot better. Especially because people's correspondence with me now is more personal and I don't want I don't want to respond back and go Wow, great job. And they're like No, I just said my agency was nine. And so so I I'm a different person now but I am just a you know, some things in my life. I'm happy to work through but I'm a fix it and forget like I'm just to set it and forget it kind of guy if I can be you know.

Scott 23:57
And I'm, as I said I'm becoming more as there's more responsibilities in my life, and I like to keep it with you, especially with technology.

Scott Benner 24:06
You said you were in law school when you found about your brother, are you an attorney now?

Scott 24:10
I have a criminal lawyer. So I'm in court every day, which I think that the hardest part about being diabetic or going to court is a lot of people are worried about having low blood sugars. My problem is having high blood sugars. So I find the adrenaline and the anxiety and I'm I don't seem nervous on the outside. But I've learned through diabetes, and I'm very nervous on the inside. I'm speaking in court. I don't think anyone would notice. They saw me talking. Yeah, but if I look at my Dexcom I'll just see a straight up arrow minute I stand up and start speaking before. So that's always been a challenge for me and I find high blood sugars can actually be at times worse the low blood sugars. I find I have trouble speaking my mouth gets really dry. I have trouble recalling facts and details. My memory doesn't work as well. It makes me sort of want to go to sleep.

Scott Benner 24:57
Are you prosecuting? Are you defending

Scott 25:00
Defending.

Scott Benner 25:01
Imagine looking over to the guy and being like, dude, I really don't think he did this. But I gotta tell you, man, it's not the time. So good luck. That wouldn't be. Scott just needs to shut his eyes for a second. Try not to say anything incriminating, like, up until my budget comes back down. No, I mean, so do you have? I mean, how do you combat that?

Scott 25:22
If I'm using my pump, I use temporary basal rates, which it's still an imperfect solution, because it has to be done. Have to make sure I start the higher basal rate about an hour or two before anything that's going to give me anxiety. And I don't always know when that will be. Yeah. And there's times when it doesn't happen. There's times when I'm going to speak to something in court. And for whatever reason, it just does what I, when I think I'm going to be anxious inside, I'm not. And if I set a temporary basal rate, I'm going to go, I'm going to be going low. And there's other times when I just can't time it properly, and I haven't set the bazel high enough, early enough in advance, and then all of a sudden, my blood sugar is going high on MDI x. And the nice thing about levemir is it's an insulin that has a very specific duration. And it's dependent on the dose, and you can even split it and take it every 12 hours. Yeah. And so what I can do with it is if I wake up early in the morning, I can take a little bit more than I would normally take. And that helps a lot, okay, and I use regular insulin as well. So I can I can take that a little bit in advance of going to court now that's almost that almost works like a temporary basal rate, because it stays in your system for about four to six, eight hours, I guess. It takes a little bit longer to kick in. And

Scott Benner 26:28
we use you mentioned a couple things are that first of all, we used to split Arden's love Amir to every 12 hours that made a huge difference. But also, I don't know how much of the podcast you listen to historically, but you just retold the take art into basketball and Bolus for adrenalyn story except you total as being an attorney and go into court. Like do you know that's the similarity? Yeah, yeah. Like I know, I haven't heard that one. It's just it's just she's really competitive kid. So you take her into a basketball game back when she was little. And her blood sugar could be 100. It could be 90, it can be perfect. And 20 minutes in the game. It's 220 and the arrow straight up and it's going crazy. And I eventually had to bring myself to Bolus, a 100 blood sugar as she began to start playing basketball. But what happens on the days when the other teams not very good, so they don't put up much of a fight and she doesn't feel the adrenaline because they're just cruising through the game? And like, how do I handle that right? And so I started bolusing that amount of insulin that I knew a juice box could cover if she didn't need it. And it worked. And then told that story on this podcast and the amount of correspondence I hear back on that one idea at how that idea helped people to use the amount of insulin that they needed. They were always scared to use more but they could never decide how like to decide on like, What's more, like what can i safely add to this just to see where things are. And I didn't even realize it when I told the story and I just used it again yesterday on a private call with somebody I was like just over Bolus for whatever you can control with some fast acting insulin. And and yeah, that's and so I'm now imagining you I'm like that, that by the way. kandla powdered wigs no powdered wigs just helped me for a second.

Scott 28:19
We do we do wear robes though robes in higher court so not in not generally when I'm in court, I'm wearing a suit but we do like Britain in Australia in our superior court and Supreme Court, Court of Appeal and higher levels of court. And we do wear the robes they wear the robes but not the way we don't wear the wigs anymore.

Scott Benner 28:35
So in your in so now we're gonna get off this for a second. So are you like how do you refer to yourself? Or do you an attorney, a lawyer, a

Scott 28:41
barrister? How do you bear, barrister and solicitor? So it's more like it's a sort of a hybrid between the British system in the American system. So every lawyer is technically the same isn't in the states that everyone has an attorney at law. Here we say barrister and solicitor because because you're both every lawyer is both. In Britain barristers and solicitors are sort of different functions. Right. barristers would argue cases in court. They don't represent individual clients, they work for solicitors and the solicitors represent the clients and solicitors do the paperwork and preparing the case. Here it's much more like the American system where what i what i do is akin to what an attorney would do United States, but technically I'm a barrister and solicitor. Outside of the legal profession. People don't generally use that term, we would just say lawyer,

Scott Benner 29:28
you don't talk to other people, you know, who are attorneys and go, I'm a barrister. And the guy goes as I Yeah, that would be potential and the person overseeing that you can it is judge the word you use.

Scott 29:40
We do use a judge.

Scott Benner 29:41
Okay. Does the judge we finally say Your Honor,

Scott 29:44
I think I think about long before I became a lawyer we used to say, My Lord and my lady, and there's still some older judges who like to hear that.

Scott Benner 29:50
Nice. That's interesting. Do you when you go into like so I'm assuming you work in the same building very frequently and See the same judges over and over again to they know you have diabetes?

Scott 30:04
No, no, not alive. It's not something I would I've Luckily, I've never been in a situation where I've had to excuse myself for a diabetic purpose. I hope it stays that way. I mean, no, it's not something I was talking about.

Scott Benner 30:16
Yeah. And not that you should or you shouldn't. I'm just interested to know if because you would think that then they could. I mean, if they if a judge was listening to you say something, and they didn't agree with you, and they thought

Unknown Speaker 30:29
it couldn't they

Scott Benner 30:30
start to think I wonder if this guy's is clear headed as he should be right now.

Scott 30:33
Right. And that's that's actually an interesting I remember you were the one who talked about when Trump mentioned that as a Supreme Court Judge at diabetes. Yeah. I can't remember what the quote was, but something like diabetes, no, good. Yeah.

Scott Benner 30:45
He said that he was he was that apparently the the report was he was in a private function. And they were talking about supreme court justices or something. And he was inferring that he was going to get a chance to make replacements. And he right, he was, yeah, yeah, he looked at my array said, and he said to the person diabetes, no good. Like, don't worry, that will die soon. Like that kind of a feeling.

Scott 31:10
Unfortunately, I think there's more enlightened people than Donald Trump who have the same mentality about diabetes.

Scott Benner 31:17
Yeah, they just see as sort of, as, I guess, broken or on your way to something, or something like that.

Scott 31:25
I remember my dad, my dad actually told me a story when he was working at a company a long time ago in the 80s, I think. And they went out with his boss or someone else, I think they had to go on a road trip somewhere. And he was driving. And then his boss found out he had diabetes, and he said, Oh, my God, if I knew you had diabetes, and never would have let you drive, oh,

Scott Benner 31:41
well, then there you go. Because he hadn't been driving his entire life. Right. And, and, and it makes you wonder why like, what was what was in the back of that guy's head that made him think, oh, letting the span drive is an incredible mistake that's, you know, creating an unsafe situation for us. You know, this is something he saw in that lock in 1983. And yeah, you know, and by the way, Isn't that crazy? Did I just pull him out lock is Matt was Matt like an attorney. He was,

Unknown Speaker 32:09
oh my god.

Scott 32:09
I've never actually seen the show. But

Scott Benner 32:12
I've never seen that luck either. But now I know that my higher function is still working. Because some days, I'm so tired, I'm like, I'm not sure how this is gonna go. There is always the fear that I'm going to get on a podcast one day and just go. So your diabetes has gone. Talk to you talk about that for 59 more minutes.

Unknown Speaker 32:34
Because I can't form a thought.

Scott 32:39
Alright, so you wouldn't

Scott Benner 32:40
tell them you wouldn't even ever consider you telling him so then Let's slide that into your personal life said you have a girlfriend. I'm assuming she's not your first one in your 30s unless she is and then I'm so sorry. But, but how much you imagine? Scott, the virgin barrister next on the Juicebox Podcast. Now I'm gonna want to call it virgin barrister, just so people can make it this far, why not? Why?

Scott 33:11
That's what they're gonna think that when they hear me.

Scott Benner 33:13
So, so how I'm so sorry, how much of your diabetes is is part of the conversation or your life with a person that you're dating. I'm not sure if you all made new year's resolution together. But the traffic I'm seeing going to the Omni pod index comm links is

Unknown Speaker 33:31
stunning. I want

Scott Benner 33:32
to thank you first for that. But I want to also give you a lot of credit for taking control for deciding to make a change. I'm actually very excited because I know how happy you're going to be when you get the Omni pod tubal sense on top. First, the demo comes and you try it on and it's exciting. But then it shows up. And you know, at first switching to a new pump or from MDI to a pump, it's different, right, you have to figure things out again, but I hope that the things we talked about here on the podcast, make that all much easier for you. So your pods will arrive and you'll get your basal rate set up and get your bonuses set up the way you want them. And then the next thing that occurs to you is oh my gosh, I just can have a snack or my son can have a snack and I'll push this button and we'll just keep going with our day. Something that used to be you know, get out an insulin pen, get out a vial, pull out a syringe, you know, pull up your sleeve, pull down your pants, I don't know where you're injecting, and then oh, here comes the needle. Everybody ready and the needle happens then you'll hold it in for a second and you'll wait and wipe it off and everything that has to happen around that that all goes away with an insulin pump. And some of the problems that you hear people talking about with an insulin pump like tubing getting stuck in their clothes, they have to take it off for a shower and then they forget to put it back on. That stuff doesn't exist without the pod. So come on, get a demo right now. Miami pod.com forward slash juice box or the links your show notes or Juicebox podcast.com lead on the pod sends you out a no obligation absolutely free demo pod. You can try it on and see what you think. Arden has been using an omni pod every day for 10 years, almost 11 years. It's absolutely one of the best decisions that we've ever made. Now much of your diabetes is part of the conversation or your life with the person that you're dating

Scott 35:16
probably more in this relationship than it's been in the past. And the reason being is because just before it was actually well, early on when we were dating was when I got the Dexcom never had a CGM before that. And that's when I started to experiment and sort of take a different view on diabetes. And I think it was something when I was diagnosed, I did fine. Once again, I went on the pump, I did find my agencies were always in the high fives or low sixes. So it was never, you know, every time I went to the endo, he told me, I'm doing fine. I thought it was pretty knowledgeable about it. And then never really thought about it. And life went on, I started to slip into the I never terrible, but I started to slip into the high sixes, low sevens. And I started to have less of a handle on it than I thought I did. Probably a lot of probably some of the reasons were I wasn't honeymooning anymore. Pumping fusion sites don't work as well as they do when you have a water pump before or when you've only worn a pump for a few years. I definitely left my my sights on way too long when I was in university, I would you know, I remember times when I would leave on for seven days, and it would just be the two but just be dangling out of me. And I just put some tape on it. It's too lazy to change it. I'm sure that I've accumulated some scar tissue from that. So I started to realize one day I needed to do something. Just because I again, I find high blood sugar. So the hardest thing to deal with not even low blood sugar. And especially with my job I want I wanted to demise having high blood sugars as much as possible. And so I started looking into CGM and I found out about the Dexcom started to try it. And so it was it was sort of early on were dating. So it became a conversation topic. And when you were the Dexcom, it's it's much easier to or when you were the Dexcom. And if you're like me when I'm looking at my CGM, I'm constantly thinking about what my blood sugar is. So it's hard for it not to be a topic of conversation. So it's definitely I think it's been more present in this relationship. And it's been impossible and

Scott Benner 36:56
she have a passing understanding of insulin and diabetes, or is it more than that?

Scott 37:03
Um, she has a pretty good understanding, I would say.

Scott Benner 37:06
Have you ever needed her help the way your father needed your mom? No. It's a different world. It really is. He was probably just taking that regular and mph and then not eating enough. And he still wasn't happy.

Scott 37:18
Yeah. Again, I think now if I have a low blood sugar, there's usually usually an explanation for why it happened. And, at least for me, they're much more much milder than anything I ever remember my dad having that was a kid. I've never been in a situation where I haven't been able to help myself. Or even if I go low in the middle of night, I'll usually wake up. Or even if I sleep through it, it doesn't seem to be a huge deal. Right?

Scott Benner 37:42
Yeah, yesterday, it's summer vacation here. And Arden's birthday is coming up this weekend, she's having a bunch of girls over. And she just came downstairs yesterday and like made the announcement that the house was not clean enough for her party, and that she would be cleaning. And I was like, all right, like, she's trying to insult me, but I was like, go nuts, clean, whatever you want. And so she spent the entirety of the day yesterday, cleaning and snacking. And like you know, every once in a while, I'd see like a big bowl of grapes in the kitchen. And she was eating them as she was going by. So we had a couple of a couple of times yesterday where her blood sugar tried to get low. And we just kept using the snacking to feed the lows. But you know, that that was the worst that happened yesterday was like, you know, was the situation was like, Hey, you know, your blood sugar 78 I think it's drifting down. So keep an eye on it. And then all of a sudden, I was like, Hey, you know what, it's going under 70 Now it's time to get snack. And she'd be like, I'm just as soon as I vacuum this, but then that turned into 65. And I was like, Well, now the food's not going to work fast enough. So you know, like, that kind of thing. But nothing emergency like just, you know, like, that's the worst that happened yet. I mean, a really scary low. I mean, once a year, twice a year, maybe you know, and even by that. I mean like, it's one of those lows, like, okay, we're gonna drink two of these juices and eat this thing. And let's shut your Basal off. And you know, and let's just wait a second and test and watch the Dexcom and stuff like that. Nothing. We're like, Oh my god, she's gonna die.

Unknown Speaker 39:09
Yeah, nothing like that.

Scott 39:12
Yeah, I think it's, I mean, I'm sure there's there are still people who? I hope not, but I'm sure there's still people who were being low as much, much bigger emergency for them. But yeah, I've I've never had that experience. I've never had a time when I needed help from anyone or had to go to the hospital or needed anyone to force food down my throat or healing.

Scott Benner 39:32
I was going to ask you, because I just saw on somebody somebody I was falling on something. social medias. So there's so much of it. But so somebody on something. There you go. She was in Canada vacationing and needed insulin and went to the store and without a prescription bought like a vial of you blog for like $31 or something like that. That's right. That's about right.

Scott 39:56
That's a good Yeah. $36

Scott Benner 39:59
Okay. So how do you when you go in? Do you? Like, do you have like a secret decoder ring that proves you're diabetic? Or how does that work?

Scott 40:08
You basically just asked for insulin they give you it. Okay, I'm not aware of any problems that have happened. That happening. That doesn't seem to be the type of drug. I mean, and we certainly have issues with drug addiction, just like there are in the United States. There's a lot of issues and certainly with oxy use, and all sorts of different drugs out there. But insulin doesn't seem to be one of those drugs that people who are not diabetic, have any interest in taking

Scott Benner 40:30
Is there a limit on how much you could buy when you walk into a pharmacy.

Scott 40:34
So not only when I'm older, I've never bought enough to be told I can't buy anymore. How it works is generally you would you would have a prescription. If you have private insurance. We still even though we have a public health care system, medications, or at least in my province, each province is different. If you're over 24, they just changed it. But if you're over 24, you still need private insurance to buy medication. And if you don't have a you have to pay out of pocket or maybe there's some assistance programs, but they're not very good for my understanding. Luckily, insulin is cheap enough here that you have some type of employment, you can usually afford to pay for an out of pocket. Again, it's about the same price as what regular cost is Walmart in the states for Cuba lager for Nova Nova lager, we call Nova wrap it up here. But so if you have private insurance, you do need a prescription for get reimbursed for it, you would still get a prescription to your doctor, you would have prescription on file at the pharmacy, it would work the same as it does in the United States. So you would require mixed tours. Yeah. Yeah,

Scott Benner 41:27
this is the insulin pricing subsidized by the government system.

Scott 41:32
It's not subsidized, but there's there's heavy so when a when a pharmaceutical company wants to introduce a drug to Canada, they can't just sell it at whatever price they want. On a free market. They have to negotiate the price with I'm not sure what it's called. But there's a there's either a government board or a board that works closely with the government that regulates prices. So they have to be able to it has to be sold that at what they determined to be a fair price. And if they want to sell it for more than what a current drug is selling for, they have to prove that that's of more value and more benefit. So certain drugs still do cost certain amounts. Insulin can still be expensive level Mir and lantis are more expensive than than humalog Nova rapid but it's it's still much, much cheaper than

Scott Benner 42:12
I imagined if this was a Harry Potter story would be called the Ministry of medicine. So let's just go with that.

Unknown Speaker 42:20
Again, here. Again, Scott's

Scott Benner 42:23
in Toronto, it's probably like almost exactly the same as Philadelphia where I grew up. And I still in the back of my mind, he's at the top of a very tall pine tree avoiding a brown bear right now doing the podcast, but in fact, Scott, you're in the parking lot of timber with

Unknown Speaker 42:38
that image better.

Scott Benner 42:41
Scott's in the parking lot of a Tim Hortons stealing, they're stealing their Wi Fi. So there ought to be an award for the for how some people make time to be on the podcast. There really is. There's somebody I forget who it was one time they did it from their car at work, and it was summertime. And I said look, it's too noisy with the air conditioner on so they shut the air conditioner off and I was like you really want to be on the podcast. I would have said no at that point. Like I'm sorry I can't do this. But But she

Scott 43:11
was persistent.

Scott Benner 43:15
So I have a question that you are uniquely qualified to answer that has nothing to do with diabetes, but I won't stay on it too long. So on another podcast that I listened to every once in a while they read tweets from something called scan bc so it's the police scanner from British Columbia's but I'm guessing and why are the crimes so delightful in Canada? Like it's always like man comes into building says that if he doesn't get his underwear back, he's gonna go nuts. It's like literally like that. And and and and and when people do hurt each other, they only hit or stab each other. They never shoot each other. Why are these things Trump Or am I wrong?

Scott 43:58
I'd say you're partially right and partially wrong. Again, it depends on the area of your of Canada that you're in. We do apparently You're right. It's there's much less crime, far less crimes by firearms. And there are with stabbings. I understand our rate of violent crime is actually higher than the United States of the firearm. So that would be a myth that we have less crime number one. firearms are certainly still a problem here but more in urban areas. So again, now well, it. I'm not saying it's anywhere comparable to Chicago or New York, or maybe major American cities. But we do have a we have major gun problem in Toronto. There are shootings every day two summers been particularly horrendous. We have gang shootings, we have drug and gun related crimes. We have a lot of the crimes that you would think only people think, I guess once people think of Canada, they're thinking of a northern utopia or nobody hurts each other. There's no guns and but it's not true. We certainly again, I wouldn't be in business or in crimes. Yeah. And it is it is getting scary a little bit. There are a lot of certainly serious problems with gun violence in Toronto. And no one knows what to do about it. And again, I don't think it's at the level of the United States, we certainly don't have the number of mass shootings, I would say that's different. It's more gang related violence, and more just people being shot in the crosshairs, or the crossfire, right, right. Above shooting at each other. But it's, it's a major, major problem.

Scott Benner 45:24
And it's funny, because all I'm imagining is the cast of strange bro going crazy and shooting a bunch of people. And I know that's incredibly unfair. But even when you say that it's a little bit for my time, but I know when you send it when you imagine Canada, like a picture of Dudley do right popped up in my mind, like, a poor country has been shaped for me by a cartoon at a movie about beer. And that's not right. Yeah. You're describing a real place, Scott. But I guess in the more rural areas, when people lose their, you know, their asset, and they go nuts on people, it's always just like, you know, this guy said that he shouldn't have been in his backyard. So in there just the most if you haven't seen this Twitter handle, you have to watch it. I haven't seen it. But fascinatingly, it's the it's it's it generally is like, Why are these people involved in such delightfully amusing crime? It's, I'll send it to you.

Scott 46:23
I'm happy. I mean, I'm happy. That's the case. And I hope the majority of crimes are like that. But I think yeah, I think I think the one problem that I think as a Canadian, I think we should talk about the problems that we have, I think, I think one thing that often happens with being a Canadian is people just want to talk about how great candidate is, and oh, at least we don't have the problems that they have in the United States. Right. But I think what that does is it doesn't expose the real problems that we do have. And there's still a lot of issues that we need to work on, we have very serious problems. And they need to be talked about. So it's nice that people have a good perception of us. And I'm glad that Americans generally think that crime is much lower here, and that it's very safe, and we're all civil to each other. And if you come up here, there's no guns aren't a problem. And I'm glad again, I'm glad those those stereotypes exist. But at the same time, it's not necessarily true. And I think these things need to be talked about by at least by ourselves, because we're not going to solve this problem. So we don't talk about

Scott Benner 47:14
now. It's obviously I don't know whose fault it is Rick maraniss? Yeah, man, maybe that guy from Saturday Night Live? He seems so nice to from way back in the day. It was Canadian. I don't. I can't think of a few of them. Yeah, I can't think of the one I'm thinking of. He's always doing something with Steve Martin now that they're older. All right. That's not coming to me. Okay.

Unknown Speaker 47:37
No, no, not.

Scott 47:39
There was a whole bunch of Canadian stagnate live in the early 90s. Right. Yeah, sure. Early, there haven't been any since Norm Macdonald.

Scott Benner 47:46
That's a shame. I heard that on a podcast somewhere. And I couldn't believe that when I heard that. Yeah, enormous, spectacular people who don't understand what McDonald's is so funny. I feel badly for I know, people are never gonna agree quite mainstream, but he's never My favorite part about normal cause he will tell a long drawn out joke that appears to go almost nowhere, and then it just stops. And you have to understand that that's what's funny. And if you don't, you will be I guess, cripplingly bored by.

Scott 48:22
For what I understand from hearing people talk about him. That's just how he is. It's not even not, he's just like that real. Oh, yeah.

Scott Benner 48:27
Like, at some point in his real life, he was like, people think I'm funny. You'd have to change anything or come up with an act or anything like that. Feds Absolutely. Fantastic. All right. So this has gotten way off the rails, Scott. But we have 15 minutes left. So what are we going to do? important for these 15 minutes? Let's talk a little bit about how you manage. So how much of this are you willing to be open about? Do you? Are you comfortable saying what anyone says?

Scott 48:52
Or was my my last? Since I started Dexcom? way once used to been? Five 5.4 and 5.4.

Unknown Speaker 49:00
Okay. Did you have any

Scott 49:04
restrictions on food? Yeah, I do. Again, a lot of it depends what mood what mood I'm in. I tried. I've tried many things. I tried even I'm sure you're familiar with Dr. Bernstein and low carb movement. Yeah, I tried that for a few weeks. It is amazing. Definitely works. I felt like I wasn't even diabetic. You don't have to even pay as much attention, attention to your diabetes, as you do when you're when you're eating carbs. But it's really hard to sustain it not even not even that the diet itself is hard to sustain. I think it's just hard to function in real life. sustain that to be around other people. To have a girlfriend be with your friends and things like that. I just found it absolutely impossible. Especially again, I live in a city. I'm often I'm often on the go taking the subway walking, grab just grabbing food as a month ago. Yeah, it just doesn't it doesn't really work with my lifestyle. And I think that's probably true for a lot of people and that's why I don't think that diet is a solution for a lot of for the majority of people. If it works for people, fantastic.

Scott Benner 50:00
Your girlfriend ever looks at you and you're walking down the street and says, Let's stop at the meat store and get some meat. Things that don't have carbs, no, like life is not set up in a

Scott 50:13
flow. If you want to have a perfect day Wednesday and flatlines all the time, then that is a sign for you. I think for people who are really struggling with control and struggling with lows or highs, or it's really crippling them, I think they should try something more, maybe more towards that. But it's very hard to sustain. So now what I do is I it's sort of a hybrid, I mean, and I sort of judge it by how my day is going. So if I'm in court again, I talked about the anxiety that I have a bloke or one on the court, definitely. So if I'm in the middle of a trial, I wouldn't go for the subway for lunch. Because I know when I come back, I'm going to spike, what I find is when i when i Bolus or take an injection, when I'm anxious. Insulin just absorbs like water. It's completely it's almost completely useless. That take very large amounts of it for it to have any effect. You bet you're a drummer, so I tried. Right? So maybe maybe I won't eat lunch? Or maybe I'll just eat chicken salad or something with not a lot of carbs. On the weekend. It's it's an entirely different story, you know? And it also depends on activity level, if I'm hiking or if I'm, if I'm running around a lot on the weekend under something, and then there might be lots of carbs because they're just going to be it's not gonna it's not gonna spike.

Scott Benner 51:19
Yes. Yeah. Do you ever find yourself in that situation? You're at work, you know, you can't go out and have something with a roll or something like that? Do you ever? Do you ever sit down? And are you ever angry about if you ever think that's not what this is? Not what I want for lunch. But I'm going to eat it because it's the right thing to do. Or do you have a more? I guess what I'll call an adult reaction to it. We're just this is how it is. And this is what I need to do.

Scott 51:46
Yeah, I don't I don't, I don't think I've ever been angry or never. I mean, there's certain times when again, when I've been in court, I'm anxious and I'm really hungry and I just like the the subway sob or something or slice of pizza or something like that. And I just wish I could eat something like that. You know, I? I guess I get upset about it. But it's not something I think about too much. I'd rather I'd rather feel good.

Scott Benner 52:05
You want to feel good? Do what I just did. I went to the dancing for diabetes Instagram page and what pops up photos from this weekend where they were raising money to find a cure for type one. That's right. They don't just help kids living with type one through dance. They're also raising money for a cure. Dancing for diabetes.com check them out. Yeah, that's more important. No, and your overall health is good. You don't struggle with your weight or anything like that. Or

Scott 52:32
the struggles with my weight. No other health problems and luckily that I'm aware of. So I mean, I mean, there's certainly certain times certain things I don't need again, I only drink Diet Coke. I would never drink I would never dream of drinking regular coke. I don't care. I've I've grown up with it. So I'm used to it. Caught I love coffee and a coffee with cream doesn't have any effect on my blood sugar. That's a great one. Rice I know I find rice is a bad one eat. It was Victor Garber, someone you had on? talked about? He doesn't eat rice anymore. Yeah. I find the same thing. I try and avoid it very

Scott Benner 53:04
early diabetes podcast. By the way, Scott, I'm real. I

Scott 53:08
didn't even realize when I said that. I just I just remember him saying that.

Scott Benner 53:13
Yeah, like figure out rice or something like that.

Unknown Speaker 53:16
Yeah, I

Scott 53:17
do remember that. I find I find it's also easier if you stick with one carb. So if I'm going to go out for a burger, if I eat a burger and fries, it's going to be a lot more difficult to manage just managing the burger. Maybe I'll get a burger and salad. Again, I think that's healthier anyway. And that's the sort of the way I tried to eat before I was diagnosed. But I don't think it has that much of an impact on my life. And there's times when you know what I just say, I'm just gonna do it. I'm just gonna get a burger fries because it's what I feel like. And I'll just try and take as much input as possible and deal with the consequences.

Scott Benner 53:45
Okay, so So that's my I have two questions. I cut you off bro. You said you're a one sees five for now, but prior to and you were you gonna say prior to Dexcom

Scott 53:54
prior to Dexcom it was I think my one before that was either 6.9 or 7.2

Scott Benner 53:59
or something around there was a great improvement and so and not that 6.9 or seven two is a bad agency but this is a big leap You know? So okay, so

Scott 54:09
I'm just gonna say it's nothing my doc my doctor ever pushed my doctor was always told me that was great. That was a great number right? You know people there the goal of course is always to be under seven. So if you're around 70 I always thought that was fine. I just found that you know, that number can be masked also even if even if it sounds like an okay number. That could be as a result of lots of highs and lows. And I think my standard deviation was was much much higher before.

Scott Benner 54:30
Now you know, you have more stability, more balance. Yeah,

Scott 54:34
absolutely.

Scott Benner 54:35
So you go out so how do you handle things like right now? Arden just finished. I don't know what the word is we're going to use but are just finished up her lady time. And so she was it was harder for the last couple of days like being aggressive was like I had to be really aggressive with blood sugars and Temp Basal and all that stuff and did an okay job but this was her first. She's only 14 just started. To up with this part of our life, you know, a handful or more months ago, this may have been the first. I don't know how to put it. I'm not a girl. But the first couple may have been like training wheel periods, this might have been the first real one, I guess that's what we're saying. Okay. And so I'm learning, I'm going to do a better job next month that I did this month, because I now see that I need to increase basal rates across the board for days. And so I'm figuring it out. But on her Dexcom line about 12 hours ago, you can genuinely see it just stop. And now we're right back to where we were, like her blood sugar's 88, right? It's 88. It's almost 11 o'clock in the morning. And if I look very quickly, at a 12 hour long, she's been between 88 and 70 for the last 12 hours. But if I go the 12 hours before that it was blood sugar, trying to go to 150 blood sugar, trying to go to 200 Bolus saying like all this, you know, it was I just didn't do a good job with the first time but I did need to see it once so that I can kind of imagine what to do next. Right now that you've seen things on your Dexcom, you've had it for a while, when you decide to just throw caution to the wind at lunch, like how do you handle dessert with a Pre-Bolus? And you're you're injecting? So if you How do you handle all that?

Scott 56:21
It's not the best that Pre-Bolus actually, one thing I found is one, it's much more important when you're on the pump, at least for me, I find the absorption is much better when you want when taking an injection. So I don't find this as important. I've tried to fiasco in the past, and it worked great at first and then I found the more I used it, I started to have some issues with it, I find just honestly just injecting Nova rapid. If I'm not stressed, or from getting a moderate level of activity, or it's just a it's just an average day, it works pretty fast. Find after I injected it'll start working in about 10 minutes or so. Which is fast enough that I don't find any to Pre-Bolus too much. Obviously, with certain foods is more important. I was eating a bagel, it's more important. I was eating all kinds of things you can name it's more important. But I just try and take, like I think what's interesting is I remember you saying forget carb counting, you know, you just you just sort of you sort of go with your gut at the end of the day, right now. And you're not even diabetic, you're doing it for on behalf of someone else, which is amazing. And you're just sort of I bet you're doing an implicit calculation that you don't even think about based on where the blood sugar's been the activity level at where you expect it to be all all sorts of even unquantifiable things. Yeah, just the way I approach it, too. Yeah, I think it's I think, if you're going to stick with a carb ratio, inject us two hours later, you're always gonna have a terrible, it's never gonna, it's never going to be the same. So I just have to sort of go on my, with my intuition. Go with what I've eaten this meal before. How did I end up how much insulin that I need? I tried to remember, not that I'm recording everything, by just try and go off go off my memory. Right. And sometimes it works great. And sometimes it doesn't. But the truth is, that's just how diabetes is. And there's, there's too many variables. And it's, even if I wrote everything down and tried to log everything, and, you know, tried to quantify every single, every single variable that exists, I still think it would be different every time,

Scott Benner 58:13
right? Yeah, all I can do is try that that would give away most of your life to that and not have them a better outcome.

Scott 58:18
Exactly. So if I'm eating a burger and fries, you know, maybe I'll, I'm just giving an example. But maybe I'll think, Okay, I'm going to inject six units start with, and then I'm going to, if I'm not on my pump, I'll use regular I'll take some regular insulin to for the fat and protein digestion. So maybe I'll take three units of regular insulin. And often that's not even enough. And I'll you know, I'll keep watching my Dexcom, just glancing at it. And if I see if I see, I sort of have to go by the arrows to I sort of know after eating a meal, it should take about 40 minutes to an hour, right, and I'll get a slanted arrow. If I get a straight up arrow or two straight up arrows. That means I didn't take nearly enough, you just put, that never happens to me. So I'll take more. Yeah, that's, again, it's not perfect. influent is not does not work as fast as where we needed to be. Even with all these advancements, even What's to be asked if what I find is if I'm if I haven't bolus directly and I'm spiking, a lot of times it's I can stop it, but it's still going to take too long. So it's not a perfect system, but it's certainly having Dexcom or CGM certainly makes it easier.

Scott Benner 59:13
Yeah, no, I definitely do. I mean, the other day, I did it with we had, you know, like I said, period plus Arden's got up in the morning, she's like, I'm gonna have a bowl of cereal and I was like, okay, her blood sugar was at as if that's no problem. And I right away, I was like, this is how much insulin I know how much insulin to do. So we put it, put it all in, she ate the cereal, everything's going along, great. 20 minutes, 30 minutes, then all of a sudden, diagonal up, like 120 and I'm like, this isn't right. Like I gave her enough insulin for this not to happen. And then I waited five more minutes to see one more reading but in Honestly, I could have tested them or just trusted myself. Because then the arrow went straight up. 135 and then I was just like more insulin. She's like, how much more I'm like, I don't know. Just push the button. Get more going like well figured out a second. Just more. And so. And so we put in a couple more units. And it stopped at around 150 and brought it back again. And it just you know, so she basically needed about, I don't know, 20% more insulin than she was going to need. I had a fair Pre-Bolus going. And she was starting with a, you know, an 80 blood sugar. So I felt good about it. And in the past, I've handled that no problem. Then I go back and look again, and realize, maybe it was this the bowl she picked up was bigger than the bowl. I thought she picked up. And we don't measure it or anything like that. So exactly, no. And it wasn't, you know, it wasn't like granola cereal, like straight from nature. It was Apple Jacks. She's like, She's like, here, this is just bad for me how much of this can fit in this bowl?

Scott 1:00:49
And interestingly, I find sometimes those cereals are easier to eat. And then there's granola cereal.

Scott Benner 1:00:54
Yeah. Oh, no kidding. Yeah. Cuz they're not as dense with stuff hangs out in your system forever and ever. Right? Yeah, at least it's a big spike from the sugar and then the fructose

Scott 1:01:04
over fat? Yeah, that's a good example. You still kept their numbers very reasonable. She never went up to 300 or anything like that. I can't obviously if

Scott Benner 1:01:13
I'm sorry, I was gonna say I can't tell you that. If I eat Apple Jacks, my butcher wouldn't go to 150. Yeah, I don't know. Yeah. it very well. I

Scott 1:01:20
don't think there's enough data. I've always wondered what what it would look like for people who are diabetic,

Scott Benner 1:01:25
I think there's some stuff you can find online. There's a lot of it. I have an old g five here. Maybe I should slap it on for a week. And then

Unknown Speaker 1:01:33
there you go.

Scott Benner 1:01:33
I'll be 10 pounds heavier by the weeks over, but I'll be like, let me tell you what I learned about rice and Apple Jackson pop tarts. Oh, my gosh, you were delightful. I don't actually know what we talked about. But it's almost over. And I had a really good time. So did you plan? Did you have anything you want to talk about that we didn't talk about? I can't imagine that you've? I'm not sure?

Scott 1:01:55
Did you have a plan? I didn't really have a plan. I thought about some stuff, I think we covered will actually covered a lot of the things I thought about cool. I think it's just that this technology is I think something to keep in mind is all of this technology is amazing. But at the same time, it's still not where we want it to be. And it's a lot of care at the end of the day, you know, obviously, you know they're coming out with pumps that are that are going to be better and better. And they're going to have closed loop technology, and new pumps that have dual chamber pumps and on better cgms and everything. But at the end of the day, this is very expensive. It's a lot of these things exist, but it's not to care about the same thing. And there are plenty people I think that's something everyone has to keep in mind. You know, it's we're not there yet. And none of all of this technology has faults. And some sometimes even going simpler. That's why sometimes I just prefer MDI is is just simpler. And often not to take away from the great things. These technologies offer people I know they've made a big difference in many people's lives. But it can be frustrating sometimes

Scott Benner 1:02:56
to strip it down and gold. Yeah,

Unknown Speaker 1:02:59
yeah. Right now that's

Scott Benner 1:03:01
cool. Now I can buy Listen, I completely agree with you, I can see 100% all sides of what you just said. And I think there's value in it for everybody. It also made me think that to some degree, there's a class system in diabetes, too, right? There's people, there's people who either have the cash or have the insurance and there's people who don't. And,

Scott 1:03:23
and there's that and there's there's the education and time. I mean, the amount again, the amount of time I I live my life, I don't let diabetes take away from my life. But I do devote a significant amount of mental energy and energy just managing it. I don't I don't think everyone has time to do that. Especially it's amazing how much time you're able to dedicate to your daughter. And I think that's amazing.

Scott Benner 1:03:42
Yeah, I've said that. It's just my life is just it'll lend itself to me being able to give time as if you were, if you were the guy that built the courthouse and not the barrister inside of it, Scott, then you might not have as much free time energy, you know, money to devote to the even just the thinking about your diabetes. And that is really important to remember that you know, people don't people, will you hear people say I ignored this.

Unknown Speaker 1:04:08
I don't know, like, did

Scott Benner 1:04:09
you ignore it? Or did you get up at six o'clock in the morning to go to a job where you didn't make very much money and all day you thought about the bills you couldn't pay? And when you got home, you had to go to a second job. Like there's, you know, there's circumstances that allow you more time, you know, or latter

Scott 1:04:23
and then not only not only that, but then when you're more stressed in life, your blood sugar is going to be worse,

Scott Benner 1:04:28
right? Yeah. And if you and if you're in a financial crunch, that's a constant stress that you may not even be aware of. I mean, look at you. You said it without a CGM. You know, you wouldn't even realize that when you stand up and feel completely composed at work, you're not you know, or maybe you are composed. It's just everything inside you. It's just like who Here we go, you know, like this is it because I'm imagining and I'm gonna keep you a little extra but I'm imagining when you're defending someone who you believe is innocent. You feel pressure to make sure that they don't serve a penalty. They don't deserve Yeah, it's got to be an incredible, like burden, I would imagine.

Scott 1:05:06
It is a burden and even even, you know, not to get too off topic, but even if I think they're guilty, sometimes with the case, I still want to do the best job I can you still have a responsibility, it's still an adversarial system. At the end of the day, I don't make a decision about whether they're guilty or innocent. That's up to the judge jury. But I still have to, I'm the defense lawyer, I'm the only I'm the only voice they have. And if they tell me they're innocent, I have to believe because no one else is gonna argue their innocence. So it can often be a nerve wracking experience.

Scott Benner 1:05:32
It's really cool. It's just an interesting, interesting way to have to live your life because it's, I love the idea that you're dedicated to the rule of law, and that it is your job to argue for this person, because you're their voice. That's amazing. And at the same time, I think about you on a personal level, like what do you do? When you get somebody off? That, you know, did something like does that? Do you feel good about that? Do you feel bad about it? Like, you know, how does that impact you personally and your blood sugar and everything else?

Scott 1:06:02
I think it depends on the situation. I'm Fortunately, I haven't represent any anyone to reprehensible. So I may have represented people who I thought we're probably guilty, who probably were guilty, may have done something bad, but not not something to the level where I'm going to lose any sleep because they're out on the streets. And they put it that way. And most people don't go to jail forever anyway. You know, unless you've committed a pretty horrible crime. Most people don't spend that much time in jail. And it usually, honestly, at the end of the day, it often makes things worse than better. So I think that this could be a whole podcast on it, though.

Scott Benner 1:06:36
Yeah, no, I'm

Unknown Speaker 1:06:37
saying that it would be very rare. I'd

Scott 1:06:38
lose sleep ability. Okay, gotcha.

Scott Benner 1:06:40
That's why I was just wondering, like, if it's, you know, I mean, cuz in the end, they did what they did, and whatever they'll do in the future is on them to you didn't just serve in the system, that's really something. No, well, thank God, you were able to get through school and do this, because it sounds like you're really good at it. And, you know, now I've spoken to a barrister.

Unknown Speaker 1:06:59
So

Scott Benner 1:07:00
somehow, you've elevated me somehow to Scott. I'm gonna, I'm gonna say goodbye and pushed off and then just say goodbye to you personally, and then I'll let you get back to you.

Unknown Speaker 1:07:11
Okay, thanks, God. Thank you.

Scott Benner 1:07:14
Thank you so much, Scott, for coming on and sharing your story about living with Type One Diabetes, thank you. Dexcom on the bottom, on the

Unknown Speaker 1:07:21
BOD on the behind.

Scott Benner 1:07:25
If you knew how long I've been editing this, you would just be like, thanks. So I'm dizzy. I've been up here for hours. Thanks very much to Scott for sharing his story. And thanks again to Dexcom on the pod and dancing for diabetes for sponsoring the show you love the show, they brought it to you check them out, dancing for diabetes.com. That's dancing the number for diabetes.com. They're also on Instagram and Facebook. My omnipod.com forward slash juice boxes where you can get a free no obligation demo and get started today with tubeless insulin pumping in dexcom.com forward slash juice box to get a G six continuous glucose monitor these things are the staples of my days with Type One Diabetes. And I think they could become yours as well. There are links in your show notes at Juicebox podcast.com. Before I go, I want to tell you that now for five straight days, the Juicebox Podcast has been charting in its category on iTunes, which might not mean a lot to you guys. But it means a ton to me. And what it tells me is this, you guys are sharing the podcasts with other people. That is incredible, absolutely incredible to make that list is is pretty difficult. At this point that Juicebox Podcast has downloaded more than about 87% of every podcast that's active on iTunes. And that crazy, and I don't have a budget for marketing, it's done by you. Something here helps you and you tell someone else about it. And it continues to grow. And the more it grows, the more people it helps if you need an example of why that's true. I just got back from Ohio at the jdrf summit. I spoke to 600 people who otherwise would not have heard this podcast. In a few months, I'll be going out to Arizona to do the very same thing, another five 600 people who don't know about this podcast who will after that, thank you so much for sharing. And I want to I want to really I get so many of these, but I'm going to share this with you. So for everyone out there who's sharing the podcast, it gets to somebody and you know, you don't know who and you don't know how it's going to help them who they're going to tell. Here's the message I just got, quote. Hi, I will try to keep this short. I've been diabetic for almost 21 years, I've struggled finding a method to gain the control I wanted to until I stumbled upon your podcast, late August, I was on a Medtronic pump. A one C was 8.8 August 24. I moved to the Omni pod in the Dexcom g six. I started to be bold with insulin. And in November my a once he was 5.4 my endo even told me she didn't think it would drop that significantly. She knew based on my clarity report it was going to be lower but was floored with how much I've never felt better in my life. I am no longer in a it's me against diabetes mode. There is this amazing community of support that I had no idea existed. Please keep doing great work. It changed my life.

Scott 1:10:13
Thank you.

Scott Benner 1:10:14
I assert to you that you guys did that. You heard something that was valuable, and you told someone else about it. I just said this, if no one's listening, if no one's sharing, it doesn't matter. Thank you so much. thanking you for this person. I'm thanking you for me, and I'm thanking you for every person who's gonna find this podcast in the future. I hope you have a great day and I'll see you next week.

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#205 How to buy Dexcom G6 at Costco Pharmacy

Pro Tip: Dexcom G6 at Costco.….

The Dexcom G6 is available at a discount to Costco members who are uninsured or underinsured. This quick interview with Costco’s Assistant Vice President of Pharmacy will walk you through the simple process.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - google play/android - iheart radio -  or their favorite podcast app.

Welcome Costco members! If you or someone you love is living with type 1 diabetes I hope you’ll subscribe to the show and check out some other episodes. Fan favorites include: #11 Bold With insulin, #29 Fear of insulin...., #37, Jenny Smith, #44 Diabetes Rollercoaster, #62 Unfounded Fear, #100 Revisiting Bold, #105 All About A1c, #121 Insulin, Insulin, Insulin

+ Click for EPISODE TRANSCRIPT

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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, and welcome to Episode 205 of the Juicebox Podcast. Today's episode is short and sweet, under 20 minutes, and I think you're going to love it. It's with Chris Pierce from Costco, I asked Chris to come on the show today to talk about the Dexcom g six purchase program that Costco is now running. Wait till you hear the prices for people who are uninsured or underinsured. They're insane, absolutely crazy. Also, you might be hearing this longtime listeners might think, hey, Scott sounds extra super smooth. That's because I have a brand new microphone, which is amazing. But that also means that for a little while you might be hearing interviews that sound like they're from one mic. While the ads and the bumpers on either side of the show are gonna sound like this. Trust me, it's only going to be for about a dozen episodes, and then it'll be all gone. I want to thank our sponsors on the pod dex calm dancing for diabetes and real good foods. about midway in the show, I'm going to do all of the ads at once in a two minute chunk. It's a lot of quick talking, I hope I can do it.

Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And always consult a physician before making changes to your medical plan. I've seen a ton of confusion in the diabetes community about this kasco program. So I'm gonna put a link in the show notes of this episode. So if you see people talking about it, and they seem confused, just share that link. And it'll take them right back to Juicebox podcast.com, where they'll be able to listen to this brief interview with Chris Pierce, from Costco. Speaking of which, listen to a little more music. And then we'll get to Chris

Chris Pierce 1:54
Zach Chris Pierce, the senior executive. In charge of addition, the Costco we call Costco Health Solutions in that division that includes a program that we call a Costco member prescription program. And in that we concentrate our efforts on on improving the affordability of medication.

Unknown Speaker 2:15
Costco

Chris Pierce 2:15
is a nationwide chain, or is it just the Americas where you guys that he have operations in a dozen different countries. This particular program and the interest around this, this offering is specific to the United States. This is for the United States only. Okay, that's important to get out of the way early.

Scott Benner 2:37
There are people who use Dexcom CGM is all over the world. But they're not they're not, um, they're not unaccustomed to being to being second in these in these endeavors.

Chris Pierce 2:50
But we, we would like to fix it for them too. And as we learn a little bit more about the program, hopefully, it'll it'll be easier for everybody to understand. But at the moment, just just limited to the US.

Scott Benner 3:00
Okay. And the program we're talking about, of course, is the ability to buy a dexcom. And it's just the G six, is that correct?

Unknown Speaker 3:06
That's correct. Yeah,

Scott Benner 3:07
the dexcom g six continuous glucose monitor is available at Costco. And I know that's been sort of, you might have been seeing it on Facebook or, you know, Instagram or something like that. But it's always seems a little confusing to everyone. So I thought I would have Chris on, he could explain quickly and succinctly what it's about. So can you just first kind of give me an overview of the program?

Chris Pierce 3:28
The concept of the program is we know there are a large number of individuals who are either uninsured or under insured. And so the goal of this program is to bring some of the negotiation power that's typically held with insurance companies directly to members. And so in this particular case, we're working hard with a number of manufacturers, one including Dexcom, to bring their discounting, again, directly back to the patient. So it results in some pretty substantial reductions in price.

Scott Benner 4:04
Okay, so not to not to cut my listenership. But if you've got insurance, this isn't for you. Is that correct?

Chris Pierce 4:11
That's correct. The requirement would be unless your insurance doesn't cover this item. We do know, about 40 to 50% of CGM, this are not necessarily available to individuals who have insurance, either because there's other requirements to get access to the product, or just not available through a particular PBM or an insurance company. And so I understand there would be a large number of your listeners who, who might appreciate the value.

Scott Benner 4:46
Is that the definition of underinsured or are we talking about three segments? uninsured, I understand is underinsured. The idea that you have insurance but it doesn't cover Dexcom

Chris Pierce 4:58
correct. Okay. And learning. So there are lots of reasons why you would potentially be under insured. Okay, but for this particular program and for this particular product, it is as easily defined as you don't have coverage for that item as you think about other items, products, like Viagra or something, those are routinely not covered by insurance programs. And we have savings on those types of products. Wow.

Scott Benner 5:26
So I can keep my blood sugar stable in my relationship and check all at Costco you're saying if I'm underinsured or uninsured, I hear what you're getting at. Okay, can I get a cheap hotdog?

Chris Pierce 5:35
Yes, we've been able to hold a hot dog a fairly good value for an extended period of time. Hopefully

Scott Benner 5:40
you've had a chance to try actually have. Okay, so that that's the, the, the kind of high level overview of what we're talking about. Now, I want to give people just a real, like nuts and bolts idea of what it is they need to do to make this happen. I obviously I'm gonna say obviously, but I need a prescription. That's the first thing

Unknown Speaker 6:04
right now.

Scott Benner 6:06
Are you the type of pharmacy? I've never done my pharmacy business with Costco before, can I have my doctor send the prescription to you and you fill it? Or do I have to walk in with it and paper does not matter?

Chris Pierce 6:18
Doesn't matter you can have if you have a paper prescription, you can bring it in. Most of our prescriptions are received electronically today. Doctors can beam them across if you will. Or if you are already shopping at Costco and just learning about this particular opportunity and you think it's a good fit, then our pharmacists can reach out to physicians and obtain a prescription if so desired as well.

Scott Benner 6:46
Okay, so I'm in Costco, I'm getting 15 pounds of potatoes. And I think to myself, I heard about this on the podcast about Dexcom. I didn't get it straight. If I walk over to the pharmacy counter just say, look, this is my doctor's information, this is my information, can you please get the script here, they can actually handle it from the pharmacy. Right? That's excellent. Okay. Now, I want to veer away for just a second to understand the kind of larger overview because in my, in my view, this is a really important first step in healthcare for people. Because basically what you guys are, if I'm wrong, you'll you'll stop me, I guess what happens is, is that people make medical devices or medication, and then they have to get it to you somehow. And there's a in between man, you know, a Pharmacy Benefits manager in between. But that's not is that not in play here with the relationship you have with Dexcom? Is it just you and Dexcom in the picture?

Chris Pierce 7:40
Yeah, we streamline that, that middleman. There's a lot of inefficiency in those arrangements. And so in a true form Costco model, we look to go direct. And by doing so, you don't incur those other expenses that happened in those other way many of those other parties involved.

Scott Benner 8:03
And that's leading us to a fairly significant savings with Dexcom. So I kind of want to go over the pricing. Real good foods is real food, you can feel good about eating they have poppers now with more filling and more flavor. They are so very tender cauliflower crust pizza that my mom absolutely loves. How about that, oh, gee, chicken crust pizza, four grams of carbs, 25 grams of protein, you know you love it. Here's the best part when you go to real good foods calm and use the promo code juice box, you will save 10% on your entire order. And how about real good foods has free two day shipping. Once that food arrives, you're going to need to give yourself some insulin and for that, you're going to want to Omni pod tubeless insulin pump go to my Omni pod.com Ford slash juice box there, you will be able to get a free no obligation demo of the Omni pod do it today that's free and it has no obligation. Really, it's not going to get much better than that. Unless, of course, you can see your blood sugar before you make decisions about those boluses and basal rates. And you know how you're going to do that with the dexcom g six continuous glucose monitor. Not only does the Dexcom show you where your blood sugar is, what direction it's going and how fast it's going. But others can see it too with their Dexcom following share features for Android and Apple. Once you're all done, you sit down in your house, your belly is full, your blood sugar is stable, you're pleased with yourself and you think I want to do something good in the world. So you go to dancing for diabetes.com and you'll learn about the good works that they're doing with children who live with Type One Diabetes. And they do it all through dance. And I did this in less than two minutes. You can go to Juicebox podcast.com where the links in your show notes to get links to everything I've just spoken about here today. The things you want are within reach and you deserve them. Go get them

the transmitter for everybody who you know Where's it or is thinking of wearing it is the device that you there's two things you wear in your body, there's a sensor that goes on your body, and then the transmitter clips into the sensor. But the transmitter is the thing I think of as being one of the big expenses. So how much are the transmitters through your program?

Chris Pierce 10:17
transmitters are $26 and 90 cents.

Scott Benner 10:21
There's a lot of quiet over here, because I passed out Hold on a second. Okay, so I'm sorry, one more time. $26 in one and 90 cents, $26 and 90 cents for a transmitter. I'm excited. Everyone knows you can use an AI an android or an iPhone to use your Dexcom g sex. But if you don't, you might need a receiver and the receiver cost

Chris Pierce 10:40
$35 and 97 cents. I should have my

Scott Benner 10:44
calculator out here because I don't think we're to 100 bucks yet. Okay. And then the sensors,

Chris Pierce 10:48
how many in a pack? We sell them in a three pack for our $318 and 29 732. So a three pack is

Scott Benner 10:58
a month. So okay, so I'm sorry, give me that last number again for the sensors. Three 318 29 1829. Okay, so basically, if I'm if I'm underinsured, uninsured, out of pocket, I gotta, you know, I got to hit my transmitters, which last three months. So I need a transmitter every three months. And I need, you know, sensors at 318 a month. That seems? Well, I'll tell you what, it seems very reasonable to me. And it's a it's a vast improvement for a lot of people. I have insurance. To me, that sounds like a lot. I know what I pay every month. And it's it's not close to that. But if I didn't have it, the cash price, do you have an idea of how much people are saving by not buying directly? From Dexcom?

Chris Pierce 11:42
Yeah, we surveyed the market a little bit to get some sense of the pricing that's out there. Obviously everybody's arrangement is different. But there are hundreds of dollars of savings on an on an item basis, individual item basis, we think are quite substantial. And we would hope that the individuals want to use it would see it the same way. As compared to what they're paying today,

Scott Benner 12:06
you would think and so let me ask you this question. And maybe you don't have the answer, because I'm asking you to put your mind yourself in the minds of the other people. But you know, the businesses that you do business with? If I'm them, you're you're important in this piece, because you have distribution, right? Because you have a pharmacy set up already, because you're your brick and mortar, you're out there. So it's worth them to sell a little less because they expand their reach and their ability to sell things cheaper is that? Am I understanding that correctly? Like I'm trying to I'm wondering, for people who are hearing that and thinking well, why can't I just buy it for Dexcom at that price? Like there's, there's got to be a reason.

Chris Pierce 12:41
Yeah, you know, it difficult to comment on exactly why other people run different business models and have different pricing. But I can tell you that what we do at Costco, whether it's with a Dexcom product or $1 50, odd dog like joked about earlier, or any other items we sell, we just do the same thing, right, we look to find the value in, in the process, right up to take some of the efficiencies out and, and provide the best value that we can for our members. So you do have to be a member of Costco to to receive this discount and participate in this program. But you know, we think with the value that's provided here, it's another great example of a way to get good value out of your membership. Yeah,

Scott Benner 13:25
I listen, by the Can I tell you something? Let me say something nice here for a second, I am a Costco member. It's funny the things you don't think about, I go into Costco and I buy a giant thing of paper towels. And they are as nice as any brand name paper towel that I've kind of ever used or seen. And there's a significant savings. Now there are some things in there, I look at them that you know, that doesn't save me enough, or I don't want 15 pounds of potatoes just to save money. But there's a ton of stuff in there that weekly we go in and buy. So if I could be a member already save money on other things, and have this benefit from Dexcom. And whatever else you guys doing that that is the last thing that I wanted to ask you about before I let you go and you may or may not know this, but is this the beginning of something like are we gonna see more of this from you guys? And is there any plans that you can speak about? Am I gonna be able to get my insulin pump supplies from you or tested or anything like that?

Chris Pierce 14:18
Yeah, you know, we we continue to work with manufacturers in a number of different categories. And so if you were to go on to costco.com, and look for the MPP that the name of the program, you'd see a collection of products, we joke a little bit about Viagra, but there are pretty broad collection of different manufacturers who see the value in in the efficiency of what we're trying to do here. And so we're optimistic that we'll be able to continue to do this and a number of additional areas and if you or your listeners have some particular area for which you'd like us to try to go take a look at, we'd be happy to do so. Okay.

Scott Benner 14:56
I appreciate so they can reach out to you through the website. If they've had have an idea.

Unknown Speaker 15:02
Sure. Yeah,

Scott Benner 15:03
there you go. So if you want Cosco to carry something, bug them about it. Chris, Chris was looking forward to your emails. You're not busy at all right, Chris, he would just love to hear from everybody.

Chris Pierce 15:16
You know, that's, that's what we do here, right? We listen to our members or we try to enjoy our members, we don't always get it right. But you know, we do work hard at it. And we take the responsibility seriously. So if there is an area that you're think really needs some attention to the modem, what we could do here with Dexcom, then we'd love to be able to go and talk to some of those manufacturers about other supplies or tools or devices or something.

Scott Benner 15:40
That's excellent. I told you, I wouldn't keep you long. And I think I'm gonna reach my promise by being just under 15 minutes. I genuinely appreciate you doing this, to create clarity in the diabetes community where I think there's been a lot of confusion for people. And so just to go over it one more time, uninsured or underinsured, which means my insurance doesn't cover Dexcom. I can have my prescription set electronically, I can bring it in by paper, I can go into a Costco and ask the pharmacist to get the prescription from my doctor for me. And then I can get Dexcom receivers, transmitters and sensors at a discounted price. Did I get that right, Chris?

Chris Pierce 16:19
Yes, well said,

Scott Benner 16:21
look at a Huh, look at me, I could work there for us. I'm not looking for a job. They don't try to poach me. So I can hear in your voice. You're not looking for me to work at Costco, I want to thank the sponsors on the pod Dexcom real good foods and dancing for diabetes, you can go to my on the pod.com Ford slash juice box, you can go to dexcom.com Ford slash juice box. When you go to real good foods calm and make your purchase using coupon code juicebox. You'll save 10% on your order. And of course, dancing for diabetes is the organization that helps children living with Type One Diabetes, through dance, you can check out all the sponsors and me on Facebook and Instagram, or use the links that you know have been provided for you now verbally. But if you can't remember them, it's okay. They're in the shownotes. And they're Juicebox podcast.com. I want to thank Costco for sending Chris on the show and helping to explain the new Dexcom g six program. I hope you found the information very useful. If you do, please share it with a friend or someone who you think can benefit. And I actually took Chris's advice and I went to costco.com and check out their pharmacy offerings. They have a wide array of things that you may want or need, including medications for your pets. So if you're looking for a lower cost stuff, if you don't have insurance, and you're hoping to find better prices, if you just want to get your prescriptions filled at Costco, I check it out. It's costco.com

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#204 Two Artificial Pancreas Studies

Jasper has been in two artificial pancreas studies.….

Rachael's son Jasper has been in two artificial pancreas studies. Today she is on the show to share what they learned about the Beta Bionics and Medtronic AP devices. 

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - google play/android - iheart radio -  or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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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, everyone, welcome to Episode 204 of the Juicebox Podcast. Today I speak with Rachel, she's the mother of a child who's done two artificial pancreas trials, one with Medtronic, and the other with beta bionics, you're going to get to hear about what it's like to be in the trial, what it's like to use the devices, and what she thought of the experiences. This episode of The Juicebox Podcast is sponsored by Dexcom Omni pod dancing for diabetes, and real good foods. I'll tell you more about the sponsors during the show. But you can always go to dexcom.com forward slash juice box, my omnipod.com forward slash juice box dancing the number for diabetes.com or go to real good foods calm. And when you use the code juicebox save 10% on your entire order.

I'm really struggling for an episode title that describes what this is about. And at the same time seems fun and, you know, breezy. I've never thought of anything as being breezy before in my entire life. I have no idea why I just said that. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And always consult a physician before making changes to your medical plan. Hey, if you're in the Phoenix area on February 23, I'll be speaking at the type one nation event for the jdrf. We're going to be doing a live episode of the Juicebox Podcast. And I'll be doing a little q&a later in the day. I'll be there all day long. Come find me. You need to register. So go to the jdrf Phoenix, Arizona webpage, you'll find it you've got Google type in jdrf, Phoenix, Arizona and then find the type one nation event on February 23rd. Come on out and check out the podcast where we're gonna talk all about being bold with insulin and everything that that means.

Rachel 1:59
Hi, my name is Rachel and my husband TD and I live in Florida. And we have three boys. And our youngest, Jasper is our type one kid.

Scott Benner 2:09
Okay, and Jasper was diagnosed at how old

Rachel 2:12
he was five It was a couple days after his birthday as seems common sometimes I hear a lot of a lot of that couple, you know, right around birthdays. We were camping in Florida tend to camping. So it was pretty hot. And we had gone to these springs where you know sometimes in the winter the manatees come there and it was summer but there's just great huge fish it was a lot of fun and he was drinking a lot and being a lot all that stuff in hindsight but nothing that I picked up on at the time. So it's uh, you know, always always like guilty of looking in hindsight.

Scott Benner 2:52
You feel like it's ridiculous but yeah, that like I should have figured it out kind of feeling but that's you know, you did fine obviously he's doing great as two years later, right?

Unknown Speaker 3:00
Yeah, I'd

Scott Benner 3:02
be more right you're I'm

Rachel 3:04
two and a half about two and a half. Yeah, and he got pretty sick when we got home from camping. I thought oh, he had a stomach bug or something. And you know, I got something sick while we were while we were out but eventually it got to the point he was doing that. That heavy breathing that's really bad. I know now and he was in pretty bad DK we went to the emergency room that night they sent us in the mobile ICU up to the Children's Hospital and he was in the PICU for a few days. Yeah, so

Scott Benner 3:39
you got to the same spot we got to the that you can't ignore this part because it looks like it looks like they just got hit by a car under and they're just grasping for life at that point which they are grasping for life but but you know you get to the point where you're like okay, I can't write up an excuse for why my my kids panting and can't lift up his head.

Rachel 4:00
I know and it was nighttime when that started. We were I had just put him to bed next on the floor next to my bed. I'm just like I keep an eye on him because he had been like kind of up and vomiting all day. And when that started it was about 10 o'clock at night and you know at first I was had just put in a bed I was thinking okay well go to you know a walking because of course it's the weekend so I always the weekend and we'll go to walk in in the morning or something and I was about to lay down and go to sleep also when I heard that breathing start and I was like No worries. You going to the hospital now.

Scott Benner 4:33
Anyway, we broke the third one.

Unknown Speaker 4:35
Yeah,

Scott Benner 4:36
we did so good with the first two but this one's definitely busted. We got to get this

Rachel 4:41
one needs to go in for some maintenance. Yeah, so luckily, the ER doctor that we saw at our local hospitals, I knew right away I think you know, and when he said it, I was like both surprised and not surprised. I didn't really understand what it is. What's gonna, you know mean for our lives, but I was thankful for the staff there and the ER doctor they are and of course the staff at the Children's Hospital. They were great.

Scott Benner 5:09
Well, you know it so I've never really spoken about this before. But I think you just alluded to it once your child is that sick when someone while you're waiting and that time at the hospital between you got there, you don't know what's happening and someone comes and tells you. I don't know about you. It sounds like it sounds like maybe you were in the same space I was in. I was expecting some large bad news. I didn't know what it was when I wasn't expecting someone to come back and be like, Oh, you just forgot to clip our toenails like like you don't mean like, it was gonna be something impactful and big like that much. I knew while I was sitting there. Because I had never seen a person that Ill before. You know, then so that wasn't that ill. months before days ago. Yeah, right or right or two weeks ago even. Are you in the Orlando area join dancing for diabetes for their fourth annual bofur? Cause it's Sunday, January 27. from one to three. You're not the first person who said I was camping. But is it with you people going into tents for

Rachel 6:13
I don't know. I know in a tent, too. It wasn't like we were in an RV or anything. We were in a tent in June in Florida. I don't know what we were thinking. But we went to go to the springs. It was really nice. And the water is so cool. And the springs and it was for his birthday. It was kind of for his birthday because there is this restaurant down by those. The Blue Springs and they have like griddles at the table and you go for pancakes. And that's what they're known for. They like you like cook the pancakes at your table. And of course the kid loves pancakes. So you know that last morning, we were there. We were shoveling in chocolate chip pancakes and syrup and everything. Yeah.

Scott Benner 6:51
Can I ask you something because it sounds like a place you really wanted to go to vacation. And I had this experience where our team was on. We were on vacation when our son was diagnosed. And many years later, we were on a family vacation. So it wasn't just us, the four of us it was extended family and extended families. Like we want to go back there. We had such a good time. And I'm like, I never want to go back there again in my life. But I but I went and I was terribly sad the whole time I was there. Like I couldn't the second time I went back I kind of could not enjoy whatever anyone else saw that was good about that place. Did you? Have you ever gone back or thought about going back?

Rachel 7:27
We have not gone back? I mean, I think I think I could buy now. But I'm not. Yeah, it's not really at the top of my list.

Scott Benner 7:37
Yeah. Right. And it's funny too. Because when we did that. So Arden was diagnosed in 2006. You know, there was no good. There's no good technology back then. So you know, when we went back, we were still struggling with diabetes. It's not like it's not like I was like the guy I am now like, maybe maybe that guy could go back there for vacation. But, you know, back then it's not like we were doing great or anything like that I just was I don't know everything about the placing, like a reminder that Arden had diabetes, we're gonna jump a little faster. Like usually people are pretty accustomed to me continuing the conversation in a very just, you know, natural way. But you're on for something specific. And I don't want to give away too much time. So I guess to ask like, lately, I'll just start like this. Couple years ago, he's diagnosed when you leave the hospital, what do they give you to start with your management.

Rachel 8:26
Um, so in the hospital, they we were doing shots, like with syringes. Um, and but when we left the hospital, they gave us pins. And that was actually really good, because he hated the syringes. He pitched a bit every time. And the part that really broke my heart was when he had it. You know, he was thinking that when we got out of the hospital, it was going to mean that he was better, right? And we didn't have to take us up home with us. Luckily, he adapted to the pins much more easily and did not have a problem with that. And then, you know, I was I had gone back to work and I was talking to some of my co workers and one of my co workers said oh, I have to put you in touch with with my friend, her husband and their two kids are all type one. And you know you need to talk to her so I did a talk to her and she said my biggest piece of advice for you is get index calm and on the pod as soon as

Scott Benner 9:21
you guys did on your own you you ventured out and

Rachel 9:26
and we you know we were still going back to the the CDs for training and stuff at that point. And so we brought it up to them. I said, Okay, I want to Dexcom like when can we get it? And we did we got it within about a month. They didn't give us you know, any pushback on that. That pump they made us wait the six months because of insurance. You know, those are really logical rules. It was, you know, maybe six. By the time he actually was on it about that maybe seven or eight months later.

Scott Benner 9:57
We said something interesting, right? They i mean i never considered Before I don't know why I hadn't, but you said it's a matter of fact, I was like, yeah, how come that's never popped in my head? For a kid, I'm in the hospital, I'm getting special hospital treatments, those hospital treatments aren't going to come home with me. Like this is something we do with the sick place. That's so interesting. And I'm assuming that this syringes just look very medical and medicine where the pens are a little more friendly looking, I guess for the lack of a better word, right. And

Rachel 10:25
yeah, I can't imagine the Poke is all that different. So I think it is kind of a mental thing. And he just, he was always pretty fine with getting shots with the pen.

Scott Benner 10:37
It's so funny. Maybe if you would have started them with the pens in the hospital and switched into the syringes. Maybe you would have just been happy to switch to anything that wasn't

Unknown Speaker 10:44
that wasn't associated with the hospital. Maybe it's so interesting anyway.

Scott Benner 10:47
Okay, so, but in this like, short amount of time, you guys have been on the pod and Dexcom users. Jasper's been on a couple of clinical trials for different closed loop systems. So my first question is, how did you get like, how did you become a person who could be involved with the clinical trials you just apply to do how did how does that work? At the end of this ad, I'm gonna tell you how to save $100,000 I'm incredibly happy to have real good foods as a new sponsor on the podcast. Did you know that all of their foods are low carb grain free, gluten free, keto friendly and diabetic friendly, and that most of the items have as low as three to four grams of carbs per serving? They have chicken crust, pizza enchiladas, cauliflower crust, cauliflower, cauliflower, calm. How do you say that cauliflower, I guess right crust pizza snack by pizzas and poppers the poppers are made. They're like jalapeno poppers with chicken nugget. It's a chicken nugget, jalapeno popper extravaganza three carbs for serving. My mom loves the cauliflower, the cauliflower flour, colleague, dear Lord, this is embarrassing cauliflower pizza. And my wife loves the enchiladas, you got to go to real good foods calm To find out more and to place your order. Now when you do and use the code juice box you save 10% on your order. 10% is a lot. That's how you can save $100,000 all you have to do is order $1 million worth of cauliflower crust pizza, I said it and use the code. And when you do, you'll save $100,000 by a million dollars worth of pizza, save $100,000 with coupon code juice box, real good foods calm. They have great food, some of it I can't say. But all of it you can get 10% off on now if you don't have a million dollars and you spend like 100 then you save 10 bucks. I mean, you know 10% It's a sliding scale situation. Back to the show. cauliflower, cauliflower, cauliflower. You know what the problem is? I know a guy that says cauliflower and it messes me up. But I can say cauliflower.

Rachel 12:54
Yeah, I just started asking because, for me, you know, and I know, this is something I've heard you talk about, like you, you're looking for that sense of control, right? There's so much about diabetes, that's not in your control, that you can't fix it or make it go away for your kid 100%. So you want to control something. And so for me, that was just like, educating myself and learning about the technology and learning about what was out there and the research and everything. So I started reading, I started listening to podcasts, I started, you know, getting on a few, you know, Facebook groups. And through there, I learned about like, for deaf friends for life conference, and we've been to that twice now. And I, you know, just really researching kind of the big companies and following them like Bigfoot and beta bionics and, and learning more about like, nightscout and how that l that works. It helps me feel like I'm doing something, you know, because I just really wanted to do something once once you kind of like, Okay, this is my new normal and you're adjusted to it and you feel like, well, now what do I do? Like, can I quit my job and go work for jdrf? Like, can I do help? Yeah, how do I help? Well, you know what I do? So I am learned about, you know, some of the closed loop systems, hybrid closed loop and, and the different companies that are out there. And I started talking to, you know, when we went to our regular into appointment, I talked to the nurse practitioner and I said, Hey, this is something we're interested in, like, Who's your research person here? Who can I talk to? and find out what trials you know, our hospital is going to participate in and everything. So they gave me the contact the name and they all said, you know, we'll give them your name as well. And I just I called like, the next day I went and call this and I said, Hey, this is you know, my kid is I think he was Fix at the time. And he's on a pump and this, you know, we what's going on, we want to, we want to be involved. So, you know, I just let them know that we were up for it,

Scott Benner 15:10
they were basically like, Look, any cool research you're doing, let me know about it because we might be interested in being involved in and your hospital that's reasonably local to you, I imagine is one of the hospitals who helps with this research. Right? I say, okay, so. So that makes more sense, because it is one of those things that no one like everyone talks about, but even like you heard a couple weeks ago on the pod was on. And one of the questions from people was how do I get involved in trials for your, you know, your closed loop, and they were like, well, you got to go to like, you know, clinical trials.gov, or whatever the link is, and they don't even 100% know how to get in, like how you get involved in it. So it is someone else you think of it is the company doing this thing, and you know, in their kitchen, but it's it's obviously a much bigger operation than that. So you first of all, were lucky enough to be near a hospital, who was involved, you were smart enough to just ask, and they were interested in, in setting you up with it. So. So the first time that you do it, I really want to kind of be walked all through it. So the first one you did was for the Medtronic 670 G. Right?

Rachel 16:16
Yeah. So a couple of months after I had called and put our name down as as being you know, kind of an interested party. And that is part of it, that we have a pretty large children's hospital with a big, you know, endo practice there. And they, they called the, the nurse practitioner called back and said, Hey, well, we have this study coming up. And let's just see if he fits the parameters. You know, as far as I think there are certain requirements as far as like, the age of kids they're looking for and you have to already have been pumping for certain amount of time. And, you know, having a whimsy of in a certain range and basically not have been in the hospital for DK or anything recently. So, you know, if he fit in the parameters, and they said, it's for the Medtronic, 670 G. And this was just before this was before, and I think now it is approved for the younger kids, but at that time, it was only approved for ages 14 and up. So they were doing the trial. Yeah, there.

Scott Benner 17:16
Yeah. Okay. Um, oh, wait, I have a lot of questions. Oh, hold on a second. I got excited there for a second. I made myself laugh. I was like, I get so excited. I forgot what I was gonna say. So the first question is, is is, did this thing happen in a controlled environment? Like you, you don't go home with it? Right? They are you in a hotel? Or in a hospital? Or like, how does that work?

Rachel 17:42
Yeah, so that depends on it can it can depend on the age of the kid and what phase of the trial that they're doing. For this one, we did a week of what they called field trips. So for a week, the kids wore them with a doctor or nurses supervision. But they didn't stay in the hospital, they went to the zoo, they went out just around town to do different life things. They went to the park Yeah, to do stuff, and see how it worked in the real world, but with a doctor or nurse there, you know, to make to watch. So they did that for I forget, it was like four or five days in a row. And then we took it home. So we you know, had to go in for training a couple times. And they showed us how it worked. But honestly, I feel like we got we got less training on it. Then the people who get it through their endless when it's approved and everything because I know they get like the Medtronic reps do a lot of training and everything. Our nurses and doctors were kind of learning it along with us. Yeah, they were they hadn't seen it before, you know, so they were kind of learning it along with us. But they were there for our questions. And there was, you know, Medtronic, a special number, you could call for questions there or to report issues and things like that. But I did also get on some of the Facebook groups for parents of users and stuff, because one of the things about the Medtronic CGM, The Guardian is what it is now with that system. You can't follow it right? It's not like six con, there's no, like Dexcom there's no, there's no follow. So we had to, you know, setup nightscout and stuff like that. So we kind of did that part ourselves. But we did that. And we were on it for I think it was about four to five months that we kept it.

Scott Benner 19:39
Now there wasn't like a doctor living in your house the whole time.

Rachel 19:42
No, no, we had to go in and we had to either go to an appointment or have a call and appointment every two weeks. So we were either going in to basically once a month he had to get blood drawn a few times and or we would You know, just we would have a call with one of the nurses and just go over, you know, the the data and everything and how it's going. And so then they at the end of the trial, we weren't going to be allowed to keep it until it got commercially approved. Or we could return it, or we returned it.

Scott Benner 20:23
That's telling but we'll get to that. How did Jasper see this whole process? It was like a bit of an adventure to him, or did he? Do I mean, how do you sell it to? Like a seven year old? Are you like you're, you're helping people and yourself? Or were you like, hey, they're gonna pet by the way? Do they pay you?

Rachel 20:41
Exactly no accommodation? Yes, he did seen as an adventure. Um, they do get a stipend. Not a lot of money. But it was like, about, you know, $25 for a visit, when you had to come in, it's supposed to cover your gas and your time. But because he had to get blood drawn, I did have to bribe him with some of that money. So he got some Legos out of it, you know, and we did we explained like this, this is something you can try out, it might be something that you love, and even if you don't like it's going to be help other kids who might, who it might be really good for. And so he was all on board. And then I mean, his favorite part was in the beginning when they did those little field trips, because he was with a group of other type one kids, and they got to, you know, go do yeah, go do fun stuff together. So he really liked it.

Scott Benner 21:29
Well, of course, because when you guys take him out, you throw him in a tent, he gets diabetes, so he's happy to go with other people, wherever they're going. Maybe he'll have a better time. Yeah. How, how much effort and time did being in a trial take like, was it a job to you,

Rachel 21:48
um, that the first part was a lot of work, I had to take a few days off of work, because the sometimes the training, some of the trainings for the initial ones especially were like three or four hours, and we didn't you know, the hospital is about a 45 minute drive from us. So I took some time off of work here or there, or my husband did he, my husband actually took him on all of the those field trip days in the beginning, because I had something else booked that week. But so we kind of trade it off. And it was a, you know, a little bit of a time commitment there. Once we were home with it, it wasn't as as much as you know, to kind of go through the rest of the trial and do the follow ups wasn't as intense. But we did have to commit, you know, the time and that's something they tell you up front like this is gonna be this much time and you're gonna have to commit to it and kind of follow through. I mean, you can always end the study on your terms, like if you don't want to do it anymore, but they're definitely Of course looking for people who are hopefully going to follow through. follow through. Yeah. Okay, so

Scott Benner 22:53
let's talk about it like from a PI first, like a wide view, being on a closed loop system. Yay or nay? Is it a thumbs up or a thumbs down? Overall? longtime listeners knew I was gonna put an ad right here. I'll get right to it in and out. On the pod. The only tubeless insulin pump in the world Arden has been using it since she was four years old. She is 14 about to turn 15. We love it. We have amazing success with it. It is tubeless so you can swim or shower without losing access to your insulin. Do you play a sport does your kids play a sport do just not like having something tethered to you. On the pods is the way to go. It is small and convenient and self contained. You use your personal diabetes manager to give yourself insulin it is not connected to you it is wireless, nothing hanging from you anywhere not on your belt, not in your bra. No tubes running through your shirt and down your pants and wherever else tubing goes. tubeless. That's what tubeless means no tubes. Here's the greatest part about Omni pod. They are very willing, not just willing, but happy and excited to send you a free, no obligation demo. No Obligation means you don't have to do anything if you don't want to free means it doesn't cost you any money. You go to my omnipod.com forward slash juice box, you put in a tiny bit of information about yourself and the next thing you know, it shows up in the mail. Then you take it out, look at it, feel it, touch it, hold it, maybe take a selfie with it. And then you try it on and wear it and see what you think. Perhaps you'll agree with me and think this is the greatest thing since sliced bread which is an old saying that I think only old people understand because I guess pulling bread apart with your hands was not that much fun. And maybe you won't, but it'll be up to you. That's the best part you have choice and a free demo is a good way to find out what you think. Miami pod.com forward slash juice box the links to your show notes or Juicebox podcast.com being on a closed loop system yay or nay? Is it a thumbs up or a thumbs down

Unknown Speaker 24:57
overall?

Unknown Speaker 25:01
Well,

Scott Benner 25:02
long pause, I'm gonna have to leave the long pause in during editing. Okay, go Go ahead, like what were you hoping? For? So? Yeah, but let me ask you a question first. Are you allowed to talk about this? I'm not gonna get you in trouble, right?

Rachel 25:14
Yeah, no, I asked. I did ask. I mean, I don't think I know anything proprietary. And I, that was one of the things I asked, you know, in the beginning, like, Am I allowed to talk about this on social media? Can I post on my Facebook that he's in this trial? And they said, Yeah,

Scott Benner 25:30
so it's so funny. Medtronic tries to get on this show once in a while, and I kind of just I'm like, I don't know anything about it. And I don't know how to, like, get involved in the conversation. And now they're going to be on kind of, and you're about to say something not nice. Okay, so maybe I shouldn't ask overall about artificial pancreas. Let's keep it specific to this experience. At the Medtronic 670 G. I have heard from people, I really love it. And I have heard from people who I think have been on other products that they're like, I don't know, it's not for me. And so you come from an experience of Omnipod and Dexcom. Do you think that tainted your experience with the with the 670? g?

Rachel 26:09
In a way, yes, because the same I was, you know, like I said, I had joined some, some groups to, you know, get support from other parents and stuff. And there are people that just raved about it and loved it and everything I did feel at the end, it was not for us, partly because of you know, not having the the ability to follow, we did set up nightscout. But there's, you know, that's out there, its own drawbacks to to that the sensor was accurate. But because of the safety features that it needed to have, in order to operate the closed loop, we were doing so many finger checks, so many. And it wasn't at all like, you know, no calibrations and things like that it was at least three or four calibrations a day. And then sometimes you would just get into what they call the loop was not a good thing, not a good closed loop. But like a stuck loop where it's asking for calibration, and you give it one, it's like, Wait 15 minutes, and you know, all the even if your numbers are actually matching, it is not accepting them. And it really, it can get really frustrating sometimes

Scott Benner 27:18
will you be because both of the idea of this is less, you're trying to make less involvement, not more involved.

Rachel 27:26
Right. And I felt like it was more involvement. Um, it was, you know, it's but I think also, if it's different having it on a kid, versus if you're wearing it yourself, because every time I went to Bolus him or check what his number was on the pump, I had to go and find him and find the pump, you know, unzip it from the pouch, or whatever, and, and do it, you know, it touched the buttons on that are attached by tubes to his body, versus what I was used to, which was like, you know, walking by him with the PDM and being waving it in his general direction.

Unknown Speaker 28:01
So,

Scott Benner 28:02
yeah, I know and, and not only that, I guess, but, you know, with Dexcom if your shit you have the following the share, then you they can be upstairs or downstairs or somewhere out back. And you could just look at your phone and you're like, Okay, this is a bunch of, I thought we were gonna do something right now. But it turns out, everything's fine. And it's that like, look in, you're done. It's over, or, you know, a brief look, and he does need insulin. And then But yeah, I get your point. Like, you have to go find the thing with the number on it. And that thing's attached to him. And, and yeah, no, it's it sounds like a little thing until you do it. Every 15 minutes.

Rachel 28:38
Yeah. And that's why I think if it was you wearing it, as you know, the person in control of of it was also wearing it. It might be different, but you're just looking down. Yeah, first. Yeah.

Scott Benner 28:48
Okay. And so. So the way that and let's be clear, for people who don't know, the Medtronic 670 g isn't approved, it is approved, it's on the market, it's you were doing a trial for under 14. So they're, it's not like this is a this isn't a thing that they're still perfecting, this is a thing that they sell. So this is your experiences with his with what they have. Okay, what about like, at a meal time, that's gonna be what everybody's thinking about, like, was it like, could he just eat those? You know, could you have gone back for chocolate chip pancakes and his blood sugar not spiked? Because you were using the closed loop?

Rachel 29:25
No, you still had to enter carb. And, you know, you still would have so you still were definitely counting carbs and things like that with the Medtronic. And it, you know, did work on it would give him more insulin, you could see the micro boluses you could you know, take a look and see where it was adding insulin if he was going high. But it didn't always keep them from spiking. And one of the things that we've always struggled with in his care is he spikes at night as soon as he falls asleep. can see on this graph, it just shoots up So you can always pinpoint on his craft, like when he felt what time he fell asleep. And it did not control those nighttime spikes either. And sometimes what would be really frustrating is because you could give corrections on it also, you could go in and try to give a correction. But sometimes it would recommend he'd be at like 300. And it would recommend no correction, because it had because the insulin on board it had been micro bolusing him this and, you know, I was like, Yes, but it's not working. He needs more like, you know, it did, it wasn't taking into account, I don't think the this is me guessing I don't know their algorithms, but it didn't feel like it was taking into account the direction of the arrows, you know, so at least that that's how I always feel like if I if I see a an up arrow or double up arrow, I'm going to be adding attacks to that insulin into that correction, like whatever the corrections supposed to be. If there's an up arrow, it's getting, you know, 25%, more something like that.

Scott Benner 30:56
No coining a phrase and arrow tax. I

Rachel 30:59
like an arrow tag. Every people say like a carb tax or really carbee foods, you know, so it's like an arrow tag. And I don't I didn't feel like that was maybe included in the algorithm? I don't really know. But he did still spike it though, you know, at times. And it would be frustrating when you couldn't give a bigger correction. Without you could do it if you take them out of auto mode and go back into manual

Unknown Speaker 31:23
way of that.

Rachel 31:25
Right? Yeah. And you're just wearing a

Scott Benner 31:26
pump. Because here's my thought I'm sitting here thinking, well, auto modes was the stop the 300 blood sugar, but it hasn't, so it didn't work. So now I'll take him out of auto mode. Now I'm back in the same game I was before except now he's on a tube pump. And I can't see his CGM data remotely. So you felt like you went backwards? I guess. Yeah. When it wasn't working? Yeah, I

Rachel 31:47
mean, I'm glad we did it. I'm glad we tried it because it was a good experience. And it was a chance for us to try some different pump that you know, just to have that experience, and maybe we maybe we would have liked it. I know some of the families did keep it at the end of the trial. So definitely was worked for for them. But, um, and I am glad we did it. But we decided we did decide to give it back at the end of the trial.

Scott Benner 32:16
What was the target? For the when it was in the in the auto mode? What was it trying to get his blood sugar to?

Rachel 32:24
it? Did it Really? I don't remember if it told us, but it wasn't like something super low like 100. It was probably like one. I think 140 is what they expected the average to be I don't know if that's the target, but that's what they expected. Like, the average to be Yeah, that's disappointing.

Scott Benner 32:44
It really is. If I think that in any of these systems, if they don't make the target user definable for me, I don't really care, then, you know, like, you know, Arden's, you and I are talking on a school day. But Arden sec. So she's, she's home from school, today, she's sleeping, her blood sugar is like 78. And I'm thrilled, like, like, that's, you know, but you know, she's gonna be about 85. And I think in the next 20 minutes while we're talking, and that would be my goal on that bolusing and 85. Like, don't get me wrong, but I'm happy that that's where she's at. So how much does being unclosed? Like? So here? Let me go back a little bit. Before you start the trial with the Medtronic, your Omnipod and your Dexcom? What was what were your goals for chasseurs blood sugar?

Rachel 33:32
Well, I, you know, I was always working him towards, you know, that like, kind of 120. But I'm at his school, he does, he doesn't have a school nurse, his teacher does all of his care. And she's wonderful. She's amazing. But I never really pushed his high alarm or his, you know, high threshold down too much. Because at school, I didn't want to put too much of a burden on her or have his alarm be going off, you know, too frequently. And that was something I you know, kind of struggled with. Trying to find that balance of like, okay, when is it high enough that I'm going to want him to get a bolus, but not so high that it goes off just because, you know, he just ate lunch or something. So I think at school, it was like, 160. And then you know, at at home, I would lower it, but I wish Dexcom would add that as a feature. Oh, by the way, what would you like having multiple, multiple high threshold like multiple profiles, multiple threshold, like

Scott Benner 34:42
any school day profile and a home? Yeah, wouldn't have to change it back and forth?

Unknown Speaker 34:46
Yeah, there.

Scott Benner 34:47
You know, all these companies that I talked to at least they are very focused on the idea of making things more definable. I actually spoke again to Brett Christiansen from Omni pod the other day and we went Back over that idea that we talked about a couple weeks ago in the in the episode, which by the way, I don't know when you're going to go up people might be like, what's he talking about? It was like, around Episode 200. But where one of the, you know, one of the people who, who sent in a question for Omni pod said, I really think I would love it if I could send a Bolus suggestion to my kid. And then all they had to do was accept it or decline it. You know. And so the idea of like, Mike, maybe my son wouldn't know how to Bolus for lunch, but I would know. And so I can see his Dexcom dad, and I want him to have, you know, a seven unit Bolus where you get 50% of it up front, the other 50% over an hour. And there's a Temp Basal increase a 30% for two hours and whatever like crazy thing you're thinking of, can't I program that send it to him as a suggestion? And instead of him having to type it in, which is the disconnect for children a lot of times,

Rachel 35:54
because they don't know decimal points?

Unknown Speaker 35:57
Right? Yeah.

Scott Benner 35:58
Couldn't he just say, except, like, mommy sent me a bolus, I'm going to accept that. And it would just happen. And when when I saw the, the suggestion from the public, I was like, That's brilliant. And right, and then I sent it to him, and he's like, Wow, that's a good idea. And then we actually followed up and talked about it again. So those kinds of ideas that come from real users, that's the stuff even maybe they can't think of, you know, they're not in our situation. And so, I don't know, I just, it seems to me that what Medtronic has going for it is that it's first it got out the gate first. But it didn't have the opportunity to go through this more thoughtful process of like, Well, what do people think they were just like, we're gonna get this thing out in the world. And don't get me wrong. If you're a person whose blood sugar is, you know, 250 all day, and you just don't know what to do, then this thing would probably be an incredible, you know, improvement for you. And in that, in that situation, that's absolutely fantastic. But even when you tell me that you're shooting for like, 160 at school, last night, Arden's blood sugar, like jumped up out of nowhere, around, excuse me around 1am. And it went up to 170. And in my mind, I was like, Oh, God, like dig. Like, I wasn't like, Oh, 170 that's not bad. I'm gonna go to sleep. Now. I was like, I have to, I'm gonna get this back down now. And so if you're a person who's thinking about like that, then this closed loop is not the specific one in your, in your experience. It's not what you're looking for yet. And so right, the hopes got to be that moving forward, you know, I'm, I'm pinning my hopes on Omnipod, but that they make it user definable, that it has a target, and that their algorithm is shooting for something. I mean, even if, even if we get a system that overnight can keep your blood sugar steady, but during the day needs more involvement, even I think that would be an amazing first step. But, you know, that's just sort of, I don't know how I'm thinking about it. It was, it's very interesting to hear, because Can I ask you, you must have like, on day one, were you? What did you think was gonna happen? Did you were you like, wow, we're gonna strap this gear on his blood sugar is gonna be 95 for the rest of his life. Like is that? Because Don't you know,

Rachel 38:25
it's gonna be higher, I knew it was gonna be, you know, like, probably around 131 40, I was hoping that it would be more steady. And that was hoping that we would be able to sleep through the night, you know, more often. And sometimes we did. Sometimes we did, but not not all the time. And there was definitely I remember one night, very vividly where we were stuck in that calibration loop. And I must have tested him, like 17 times, I think I counted the test strips The next morning, you know, trying to get him back into auto mode before school the next morning so that he could go to school in an auto mode. And it was, so we had some frustrating nights like that, that maybe soured me on, you know, the good part. I could.

Scott Benner 39:15
My husband, he makes a good living. He's very handsome. does come home every day and poo right in the middle of the living room floor, though we're trying to overlook it. But it seems to be what he does. Like if I listen, there's something she can't overlook. And right and, and so I just inadvertently drew a line and said that the Medtronic poops on your floor, but I

Unknown Speaker 39:39
didn't mean we're not saying that. Yeah,

Scott Benner 39:40
no one's saying that. So, okay, so you have that whole experience. It lasted for a few weeks. You gave the metro where they like, Hey, would you like to keep it and you're like, No, thanks.

Unknown Speaker 39:50
Yeah.

Unknown Speaker 39:52
Didn't seem to crush them a little bit when you said

Rachel 39:54
no, no, because it wasn't we never dealt with the Medtronic. People directly. It was our nerd So and he's great. Yeah.

Scott Benner 40:01
How surprised you're not surprised was the nurse when you gave it back?

Rachel 40:06
I don't think he was surprised because I, you know, I reached out to him a lot when we were having different issues, because they helped us report some of the problems that we would have with the sensors or whatever. So, you know, he he knew some of the problems and the frustrations that that I'd had already. And so I don't think he was surprised. But I know, I know of couple of the families kept I don't know exactly how many out of the group, but some gave it back and some Captain Well,

Scott Benner 40:36
again, if you're, you know, if you're a person who is just not capable, haven't found the answer yet to your blood sugar, it's probably a huge benefit. You know what I mean? Like, yeah, I spoke to someone, privately a few weeks ago, who was in their 20s. And their blood sugar was just I, they sent me the graph, it was like, it was like, 6400 6400 6400, say, all day long. Yeah. And they're like, I don't know what, yeah, I don't know what to do. And I said, How long have you had diabetes was like, like, 18 years, I was like, Wait, what? You know, and just it just for, they couldn't figure it out. You know, and that's completely reasonable, by the way, because as I was speaking to them, they were doing the things they were told to do by their doctor. They weren't, they weren't like, ignoring it, they were putting a ton of effort into it. And they just kind of couldn't, they couldn't wrap their head around whatever it was that needed to be done. And I think I talked to them for 40 minutes on the phone, and the next day, you know, never went on like 90 and didn't go over 140. And the next day had a bagel. So you do just need to understand what you're doing and, and once but if you don't, again, if you don't, and you don't find that information somewhere. This is a huge help for you. It's just not it wouldn't be for me, and it doesn't sound like it was for you. Okay, so undaunted, undaunted, Rachel, be a glutton for punishment, I'm gonna say, I'm just guessing, because I really don't know this. The hospital called you again and said, Hey, would you like to be in another trial? Is that what happened?

Rachel 42:13
Yeah, well, right at that, actually, like, while we were giving the Medtronic pump back, they offered us another study, which was actually a low carb study. And they wanted, you know, they offered to get us information on that. And I looked at the information, but that one I decided not to do because at that time, I was a little concerned about Jasper's weight. He hadn't gained weight, the last couple of appointments. So and I, I, but I did talk to him about it. I said, hey, look at this is what you'd have to do, you know, in heat course. He's like, yeah, I want to do it because he's thinking Lego money, right?

Scott Benner 42:50
Maybe there's a Lego set, I need Wait, I'm willing, feel free to sell my hair.

Rachel 42:56
I said, Okay, let's try it at home. We'll eat low carb for a couple of days and see, you know what you think, and I don't think he lasted the day. So it was just going to be I felt like it was going to be a lot of work on my part as well to switch everybody. I mean, I know. Some people love low carb, and that works for them. And that's great. We don't particularly focus on it as a family. And I would have been a big Yeah, it would be a big change. And I did or I would like I said I was a little worried about it his weight at that point. And I said, You know, I don't really want to do that. But I said, keep us in mind. I knew beta bionics was coming up, because I had introduced myself to a Damiano at a for one of the friends for life conferences. You know, he was he was there to give us update and everything and was talking to people on the floor and said, Hi, you know, I I'm from Boston, so I'll use that as like my little intro. You know,

Unknown Speaker 43:56
Rachel, do I have to call

Scott Benner 43:57
this episode creepy, Rachel, I mean,

Rachel 44:00
like, I you know, I kind of wear my way in there. And that So when are you having What are you having trials, clinical trials for the kids, you know, and I, he because you guys can't be

Scott Benner 44:09
worse than the Medtronic. So

Rachel 44:12
I'm actually this was before this was the first friends for life. We were so this was like, two years ago and I was before even the Medtronic trial. But I knew that at some point they were going to have pediatric clinical trials or beta bionics at our hospital because he mentioned our, our hospital as one of the locations. So I told our nurse practitioner, that we don't really want to do the low carb study, but keep us in mind for beta bionics. I thought I was still going to be maybe another year away. But two weeks later, one of the nurses approached us we were at diabetes camp that the ADA puts on and the nurses and the CBE team are usually there. And one of the nurses approached us and said, you know, hey, somebody is going to come by at the end and talk about what trial coming up Do you want to can't tell you what child is but you know, to watch information. So, yeah, we'll be there. And so we spoke to is one of the doctors from the hospital. And you know, she mentioned that I was going to be another closed loop system. She didn't say the name, but I like. Yeah. So we we signed up for that. And that one was, so that was this past summer. Yeah, let

Scott Benner 45:24
me let me say this was back in like June or July of 2018. And I'm actually proud of myself, because I don't plan anything for this podcast. But we actually planned for you not to come on until after you were done with beta bionics. So I started talking to Rachel, back in the summer, it's January now 2019. And, you know, she had had this experience with Medtronic already, but we were like, let's hold off and let you get through this other experience, and do this. So I hope everyone appreciates that. It's like seven months worth of effort went to bring you this information. from Rachel, hopefully, the information about beta bionics will be better than the information to get a little more excited than the Medtronic one. But, but, uh, hey, I'm just saying, like I I, you know, I'm not always not planned out is what I'm trying to get.

Rachel 46:08
You planned it and although you did that email me and you're like, how come you're not scheduled until January? I forget.

Scott Benner 46:15
Okay, so good point. Let's tell them that we planned it upfront. And then once you set yourself into the schedule, I didn't remember why it was. Yeah.

Unknown Speaker 46:25
So credit for work credit.

Scott Benner 46:27
I'm gonna take half credit on this one. Okay. Okay. And, and so tell me a little bit about what beta bionics is. I know, it's, it's Ed, they're up in Boston, they've been working on it forever. It's had a couple of names over the years, I feel like was it I let it one time. I'm about to tell you 100% true story about Dexcom. From just last week, I received an email from a mother of a small child. She showed me the kids graph, his blood sugar's went from 60 to 400. And then back to 60, then up to 400. It was up and down, and up and down. I looked at the graph, she and I spoke for a few minutes, made a couple of adjustments. Three hours later, we had the kids blood sugar, under 202 days later, his blood sugar never went below 70 or over 130. How do I do that? I don't live with them. I don't know them, I couldn't see the food they were eating, which just looking at the data from this child's Dexcom g six continuous glucose monitor. Imagine what you could do, if you had that information for yourself or for your child. You could say, Oh, I put insulin in here, but it didn't react the way I expected it to. So I'm gonna put it in a little sooner next time, maybe I'll put it in a little later, maybe I'll use a little more, maybe I'll use a little less. That's what you can figure out with that data. You listen to the podcast, you will understand the ideas. Now you have to have the information to make those decisions with you go to dexcom.com forward slash juicebox. And get started today. I'm telling you, I wish you could see this graph 6400 6400, then bang down to 200, then bang down to 130. It's not magic, it's not at all. It's just understanding insulin, and having the information The Dexcom provides. I don't think I can strongly enough recommend the Dexcom g six dexcom.com forward slash juice box tried today.

Rachel 48:29
The pump is called the island, I le T and the company is beta bionics. And so they have you know been working on this closed loop and what's unique about their system, which we haven't got to experience yet but we are supposed to do is still coming up because we're we're really not done with the trial yet I'll explain but it's a dual hormone system, meaning that it has a stable glucagon as well as insulin. So the part that we've done already was insulin only. And the part that still coming to be trialed will be the the dual hormone and what we've done so far. So what we did back in July was only a two week trial. So it was sort of like that first week that I talked about with Medtronic where we just did the field trips and we had a doctor there the whole time. We did something like that. But we did it for two weeks, one week where the kids were wearing the eyelet in one week where they were wearing their regular doing their regular care whether that was a pump or MDI, okay. And so they had a great time. This was a really fun group of kids. He made some good friends and the families all you know, it was just like giant big field trips. The nurses everybody was was fantastic, but the purpose of that part of the study wasn't really to get like pretty Flat CGM lines and make it you know perfect blood sugars. In fact, what they were doing is they were really doing everything they could to push the kids out of range. They fed them pizza, they fed the Mexican food. They gave them popsicles and cupcakes. They ran them around on the at the zoo at the skating rink. They gave them tennis lessons. I mean, they were all over the place this days, every day for two weeks. And what they were doing was just seeing if the eyelet would keep them in range or bring them back in range without a lot of interventions from the user. Are they the caregiver? Okay,

Scott Benner 50:36
let me paint a picture first the eye let is there kind of proprietary pump, right. And then is there a CGM is involved? Yes, it's the Dexcom Dexcom CGM. Okay, so their pump Dexcom CGM eyelets tube right.

Unknown Speaker 50:50
eyelid is to, right.

Scott Benner 50:51
I'm picturing in my head. Now. I know I've seen it in the past. And so you guys are two weeks in a row. Again, it's like sleep. It's like camp you don't sleep away at I mean, I heard you say tennis lessons in there. So So okay, they've got you run around. They're trying to they're trying to push the limits of, of what they've got set up for this work better than the Medtronic.

Rachel 51:13
I felt like it did. Yes. Um, I stayed, we didn't wear them. We did. I mean, we did keep them on you know, overnight. And so once they had it, and then they were being followed remotely by the the nurses, and the doctors and the beta bionics team, all that Dexcom data was, was going, you know, to them as well, and you get a phone call if the kids were out of range too much. So I felt like it, it did, because he still, you know, I said before was he had those nighttime spikes that are the bane of our existence, but he still had them. But the eyelet would bring him back in range, without any intervention from us, you can't correct on it, there's no correction feature. So you just let it do its thing, and it would bring him back in range, and then he would stay steady the rest of the night. So at least for that part, there was less effort and intervention. from us, there also is no counting carbs. You just say if you're having like a small, medium, or large meal. Um, and so you know, that was really kind of a revelation. Because we didn't Yeah, we were having dinner one night, and Normally, I would weigh out a lot of his stuff, or fortunate and just try to eyeball things to get, you know, an idea for for the carbs and think you wanted a second serving of watermelon or something. It's like, Oh, I don't, I don't have to weigh this, I don't have to even tell the pump or anything. So to set a little change, like that was, was pretty cool. They, for the purposes of this study, they didn't want us to Pre-Bolus and they didn't want us to announce any snacks or things like that. So I feel like if you were allowed to do those things, you'd get a little bit better results in terms of being in range. But like I said, they were just they were trying to push it, they wanted to see like what what it could do, you know, in real life with kind of messy user interface kind of thing. Like the user, you know, not

Scott Benner 53:15
very little effort into, like making it work just seeing what it accomplishes on its own.

Rachel 53:20
Yeah. Okay. And we were using a deck calm, but they are also running trials, I think with adults on the, let's see implantable one cynthiana existence ever ever since. Yeah.

Scott Benner 53:33
Okay, so how about lows that he experienced in the lows overnight with a bit fuzzy running around like that doing all that stuff is?

Rachel 53:40
How did you get really experienced lows overnight, he would sometimes experience lows. When he was running around, you know, actually doing the the exercise and stuff like that he had a couple not really not too many. And I'll say he does have a good amount of Lowe's in general in real life, and I can attest because we order our juice boxes on Amazon, by the way the K pack is Yeah, so I know we've gone through probably 500 juice boxes in the last year based on you know our order history. What do you What's

Scott Benner 54:15
it what number we call low in your house? Like, where does that just box going?

Rachel 54:21
it well. I mean, his little alarm goes off at 70 as probably give him a juice box if he's heading down from there or in the 60s are down from there. Otherwise, it might just be like a glucose tab. If he's just

Scott Benner 54:36
hanging out there anytime phases to get ahead of that stuff. Do you ever do that?

Rachel 54:41
Um, yeah, if he's now and in real life, when he goes to karate or something like that. Then I'll, I'll do 10 vehicles, but a lot of times it's just he seven and he's,

Scott Benner 54:59
yeah, no, I understood. I'm not judging you. I was just wondering. Yeah, yeah, I just I have a lot of luck with, you know, seeing something coming and tamping the bazel back and getting it to bounce back, you know, with with just that I've eliminated a lot of our juicebox in the last couple of years, being more active with basal rates. So yeah,

Rachel 55:20
that's something I probably want to work,

Scott Benner 55:23
work on a little bit more, you stop being an unpaid employee of every insulin pump company in the world, but, but Okay, so they really pushed him for two weeks, and I'm sorry, and that that beta bionics test that had glucagon in it, or no,

Rachel 55:38
no, it did not, it was insulin only. Um, and it was the gen three. So if you, if anybody's interested in check on the beta bionics website, they have pictures of, you know, the different pumps in there, how it's changed. And so it was a little bit bigger and bulkier. We saw the gen four, they showed it to us, and it's a lot smaller, and it like chart recharges wirelessly and stuff like that. It's pretty cool. But we didn't get to use that one yet. So I think that's, you know, maybe coming, but we use the gen three, and it was insulin only. But that is why I mean, I know some people say well, I don't see the point of like, having this stable glucagon or the but for a little kid who's sometimes their blood sugars are a little bit more unstable just because they are you know, there's there's so many variables. And then it I think it would help for to catch some of those lows, rather, you know, and eliminate some of those, some of those juice boxes.

Scott Benner 56:48
Yeah, of course, no, I don't see how it could hurt, honestly. And so you're so right, what they were testing was their algorithm, because they because they're they're shooting to make a device that not only tries to avoid highs and lows, but if you do get low, can give you a an infusion of this glucagon, like in little bits to kind of nudge you back up again. But that wasn't part of what you were doing yet. And so there Do they give you any feeling for how far from market they feel like they are?

Rachel 57:20
Well, I know that I'm we're scheduled to do the second phase of that study we did in 2019. So we, we should be able we should get that. From what I heard and it's not pot not sure yet, but that that Gen four with the glucagon in as the second phase of the study in in 2019. So I'm going to say not this year, probably maybe next year, you know, usually I think after they get that because I know what the Medtronic after we did that part of the study for the pediatrics, it did get approved for pediatrics pretty quickly after that.

Scott Benner 58:04
You were sort of the end of the of the line to get it.

Rachel 58:06
Yeah, that was like the last thing they were Yeah, they were doing so I would imagine maybe it's similar. But

Scott Benner 58:13
yeah, I mean, I guess if they get the data back, they need I wish just um I'm gonna sound stupid, because I can't think of the name of the company off the top my head, but I've been having some contact with a company who makes who is bringing a stable glucagon to market, one that doesn't have to be constituted. And and you know, and doesn't go bad and that kind of thing. You know, very quickly. I mean, listen, it's, it's a great idea if it works. It's a great idea, you know? Absolutely. There was a time years ago, where all talk of artificial pancreas was that it would make decisions about your blood sugar based on a you know, a CGM. But back then it was, you know, one day when the CGM work well enough, and it would have glucagon in it to bring you back up. If you got low, every conversation from every company included that idea. It wasn't until I don't know what until they either decided that glucagon stability wasn't going to come to market quickly enough. Or maybe they started having better luck with their algorithms, and thought they could control the insulin better and then stay away from lows like that. I don't know what it was exactly, but then a lot of them got away from it move forward. But beta bionics stayed, stayed the course with the idea of glucagon and, and an algorithm so it's cool, I listen options are fantastic. So, you know, let them all do their best and get it out there so we can give it a try. If the beta bionics one was available right now, as you saw it without the glucagon, would you use it over what you have?

Rachel 59:47
I think I think we would because did have the advantage of working with the Dexcom. So there's, you know, that kind of solves some of the issues we had with With the Medtronic system, it is still a tube, two pumps. So there's, you know, definitely some drawbacks to that, as far as amena, as far as I'm concerned, as the parent, Jasper didn't seem to mind it too much, but I think he prefers a little bit not to have a tube pump, I definitely prefer in terms of, you know, not having to disconnect for a bath and swimming and all that stuff. We live in Florida, we go to the beach or the pool a lot. So I, you know, I kind of do prefer not to have to disconnect, but I definitely would try it. And I think that the advantages of having that ability to let go of some of the things like the carb counting, and just like, having to remind him, you know, like, Wait, hold on, you can't eat yet, you know, I need to bless you for that, and things like that, and some of those little everyday things that would be left the burden would be worth it. And I know, that's what, what they want to so I, I would love it. And I'm looking forward to the next part of of the trial, when we get tried again, as as well as you know, other things that are coming, I'm just excited about the competition and the different options that are going to be out there. Everything that's, you know, been announced with Omni pod and tide pools, the loop app, whatever, you know, might come of that when we see that happen. I mean, I'll I'll try whatever you like kid happy, whatever makes his life easier, whatever, you know, makes it a little bit less of something that he's going to have to think about because he's only seven in second grade. And so he really doesn't, you know, probably think about it as much as I do right now, or is it as his dad does? And I'm hoping that you won't have to Yeah,

Scott Benner 1:01:51
no, I Well, first of all, thank you for doing this because it does not sound easy. It sounds like a big time suck, you're not getting paid a bunch of money or anything like that. And it is helping everyone. So I appreciate that, you that you're doing it. And I agree with your sentiment. So I think that, you know, whatever they're all working on. The best they can do is I want to say it and I want to have an option of it. I you know, I really do. I'm it makes me excited for like you said like, What is Omnipod doing right now? And so, you know, what is all that mean? Like what is it they're shooting for? Like? Are they in a super lab somewhere trying to make it user definable and? and a lower? And is their algorithm, you know, better than someone else's outer? Like, I can't wait to find out it none of it can be bad news, the literally mean, so are you and did the so I want to kind of ask you just more from an emotional standpoint, before you saw this stuff. Were you more excited about it than you are now that you've seen it?

Rachel 1:02:51
No, I'm more excited now. Because I'm, we tried it, I know what the capabilities are. And I know that it's only going to improve, I know that there's more companies, you know, more things out there that are going to be good options. So I'm really excited. And I know that we just had New Year's to just turn 2019. But I'm excited for 2020 because that seems to be when everybody's shooting for, you know, keep hearing from whether it's horizon or whatever, that it's going to be 2020. So I'm excited to see what the announcements are this year, see what does come out and you know, what's gonna come out next year? And I'm hopeful that, you know, they start going to be things that, that make our kids lives easier.

Scott Benner 1:03:35
Yeah, no, everybody, absolutely. I agree, I can't wait, like, do more stuff, make it better. You know, I think Dexcom was talking the other day about their, their project that's, you know, making the their sensors much, much smaller. And, you know, I, you know, changing a lot about how it is structurally, I think it's gonna be disposable at some point,

Unknown Speaker 1:03:57
like, you know, yeah, I

Rachel 1:03:58
just saw those pictures with the verily and it's gonna be tiny. So that's, that's awesome. And, you know, I definitely, that the trials, like I'm not, I'm not trying to, you know, put any of the companies down, I think the trials are what we learned from, you know, in, and they're maybe not perfect systems yet. But that's, that's what they're how they're going to improve. That's how they get better with all this feedback. And even when they do get approved on market, like, they're not going to be perfect. We know the, you know, the Dexcom g six rolled out and, and people had issues with getting supplies or you know, with this and that and, and so Dexcom is going to take that and learn from it, I'm sure. And so it always happens with a new product where, you know, it's not going to be the final version of it when it comes out of the gate, if that makes sense. So, I think it's, you know, it has to get out there it has to get used by real people in the real world. And it has to, you know, go through trial by fire and get improved in order to make improvements and for them to have that data,

Scott Benner 1:05:00
especially in a niche market, which I know you don't, people might not think about it that way, because you have diabetes, your kid has diabetes, but there aren't that many people in the world who are who need an insulin pump. So right these are, you know, Medtronic, the bigger one of all them companies, but a lot of these companies are very small. They're small companies, you know, it's Yeah, Dexcom, who's now starting to have financial success didn't until very recently, and it's a smaller company that's growing on the positive, smaller company that's growing. I just, I saw somebody online the other day complaining about a device, I don't it doesn't matter which one it was. And they were like, it should do this, it should do that they shouldn't let this happen. I was like, You should be happy that these people are in this business. Because, yeah, like, this is not a, you know, the whole world's not clamoring to be in the insulin pump game yet, you know, like, like, we're in the CGM market, like be happy that there's somebody out there who thinks that this is a viable business and is trying to make something that's going to help your life. Dancing for diabetes is for those living with the daily reality of type one diabetes. They offer supportive community interactive programs, and creative resources designed to empower you to live a healthy life dancing for diabetes.com. They're also on Facebook and Instagram.

Rachel 1:06:24
Right, because we've lost several pump companies over the last couple years, you know, so, I mean, that it definitely could go the other way where we have less choice, and I'm hoping that instead, we're going to be able to have more, you know, more, right?

Scott Benner 1:06:37
Yeah, What you don't want is for these people who are, you know, are just CEOs and business people trying to make a business for them to just go you know, what, just use your insulin pen. Good luck. Yeah, you know, I'm gonna go make money selling something else, because you're not because they're not selling televisions, like, right, like everybody doesn't have three of them in their house, that's an easy basis to make money with, you know, selling somebody a glucose monitor or an insulin pump. That's a, that's a different game. It's a it's a niche market. And, and beyond that being a niche market, not even everyone in the niche market uses an insulin pump. So it's not like, it's not like there's, you know, 3 million people with type one diabetes, and I get to sell every one of them my product, like I you

Unknown Speaker 1:07:15
know, right.

Scott Benner 1:07:16
It's, I don't know, I'm thrilled that there are people involved in it, that are very much now seem focused on it. They seem, they seem like there are people in the company who have diabetes, and that they have a personal stake in it. You know, like maybe one of the most exciting things chasi ever said, when she was on talking to me from Omnipod is that her dad has diabetes. Like, you know what I mean? Like, she's, I'm sorry for her father, but she's, she's tied to it like she's currently invested. Yeah, not just trying to make money.

Rachel 1:07:46
Right, right. With beta bionics, you know, at Domino started doing this because his son was diagnosed, you know, and that was his goal was to get it, you know, ready for when his son went to college, which he is in college now. And they're, they're so close. So, you know, I know that they a lot. And that's true in a lot of these different companies as people. Oh, yeah. They're

Scott Benner 1:08:07
cool and Bigfoot and like, yeah, big. But, like, again, that's what you want, you want somebody who isn't just going to hit the first like, Roadblock, or the finances aren't going to look kind of shaky, and they're just gonna go out, forget it, you know, they need to want to stay in it for, you know, for good reasons. And those reasons are going to help you and my daughter and your son and a lot of other people. So I'm thrilled by it. I just don't, sometimes I think people are spoiled, like, like, you know, they're just, I think sometimes it would be nice if they all had to boil their urine to find out what their blood sugar.

Rachel 1:08:38
Right, and the glass syringe

Scott Benner 1:08:40
might calm everyone down a little bit when they're like, this doesn't work the way they said, and like, yeah, calm down.

Rachel 1:08:45
It worked the way they said for, you know, you know, it's 13 or 14 days, and you know, for two hours on one day, it stopped working and you're upset, like, this isn't your you don't mean like, it's not, like give that feedback to the company. Don't just complain about it on social media, because the more they get those reports and that feedback of what the issues are, where the pain points are, then that then their research teams are going to focus on that I send those little like, troubleshooting reports Dexcom all the time, you know, because I figure they're gonna want to know, if it's not working. If this, you know, something is an issue, they're gonna want to know. So if we have a pod fail, I'll call Omni pod, not because I necessarily need a new one that day, but because I think that they need that data. You know, in order to improve their product,

Scott Benner 1:09:31
a company needs to know the difference between a one off problem and something that that's happening consistently. And so that they can say alright, we have to like I guess, again, I said they're small companies how we're going to need to divert some of our attention to this issue over here because we're seeing it enough to know that it's an issue and not just one random person calling up being like this thing didn't do what you said it was gonna do. And and it you know, plus, listen, this stuff, you know, one of the goals of all this stuff needs to be ease of use. But there are people you see it online all the time they're complaining, like this thing doesn't do it. And when you're fine with it, or like, You're not even using it correctly, like, How are you, you know, like, you want it to work, you're not even doing it right, like, and then, and then they don't see themselves as a fault. They're like, this thing doesn't work. And it's, it's like if you took a hammer, and tried to screw and you know, a screw in with it, and then you called the hammer company up, you're like, I was trying to screw in a screw with your hammer and it didn't work. This thing's just work. Yeah, I just it's very interesting. The whole thing. So obviously, these company's goals are to make it, you know, failure proof, like so that you can't mess up and look at all the effort that goes into it. I mean, listen to what Rachel has been talking about, like, like these, you know, between the Medtronic and the beta trials, like they got the kids all over the place. They're trying to figure out, how do I make this work better. And it's, it's it absolutely exciting time, if you're not excited by this. I don't even know what to say to you. Because this is this is as cutting edge as diabetes, living with diabetes has ever been. So I'm all jacked up. I can't wait. I can't wait to talk to somebody who came out of the Omnipod trial. Like, I can't wait to hear about that. And whatever else is coming. So if anybody else is out there doing this stuff, let me know. I'd love to hear more about it.

Rachel 1:11:17
And can I add, so one more thing I wanted to mention. Um, we also have done trial net. And so if, if people listening don't know, trial net, is a blood test that screens for the antibodies that indicate you might be at risk for type one, they offer it to the immediate family members have usually a child with type one. So parents or siblings who are over 18 can get screened once I think for free. And then the siblings who are under 18 can get screened every year until they reach 18. So Jesper has two brothers. And when we first heard about trial net, you know, we were a little bit split on it, my husband and I discussed it, and we like do we do this? I thought it'd be good information to have. And I also just like we've been saying, We want to help the research just in general, right? Even if we didn't necessarily need the information, we give them data on he kind of felt like, well, what if, what if they have the antibodies? What do you do with that information? You can't do anything about it. And I hear people say that sometimes like, why would you want to know, because you can't do anything to prevent it. But that's not really true, because there's a lot of research and clinical trials right now going on, focused on delaying the onset, or preventing the onset of type one. And you can only do those if you're one of those people who have the antibodies, but you haven't been you don't have clinical symptoms yet, right? You haven't been diagnosed. So those are the people they're looking for, and they find them through trauma. So I would put a plug out there for people if they have the option to do the trial net. I know right now they're doing one with this drug that they actually do use for other autoimmune diseases already. I think this used like for lupus and rheumatoid arthritis, and they're seeing if it can prevent or delay the disease progression. So it's, there is something you can do if you get results back that you or your kid has the antibodies and that's really the only way they can find those people who are newly are not even diagnosed yet is through that screening and testing. So

Scott Benner 1:13:17
yeah, I'm trying to look real quickly. Trauma has been on the show. And I'm trying to tell you figure out real quick what Episode Two, I have so many episodes, they were on episode 52. And Dr. Greenbaum who runs town that was on to talk about, you know, all the benefits of it. My son has done it. It is really, I mean, there's that argument in there I you're what, you know, the one you just voiced, like, what I rather not know what's coming or no, it's coming. But like you said, Now there's, they think that they can either slow or stop the onset of diabetes, if that's what they're working towards. If you have three kids, and one of them's got genetic markers, it says they're going to have tape on one day. I mean, I'd want to know and get involved in tried to stop it. So look at you, you really are a good person, Rachel. And you don't have much of a Florida accent at all.

Rachel 1:14:07
No, I like I said, I'm from Boston, but I've been in Florida about 20 years now. So I heard it once or twice, but it wasn't.

Scott Benner 1:14:14
Uh, it wasn't very nice. I would love to come down there sometime. And you were talking about friends for life. I always my kids played so much baseball and softball in the summer that I never could get down there. But I think my life is is opening up a little bit where it might allow me to do things during the summer. So

Rachel 1:14:33
yeah, you should come it's really fun. Even my son type one kids enjoy it. They were after we went the first time they were like, are we gonna go back next year? Because it's at Disney to I mean, that's a bonus. So yeah, I mean,

Scott Benner 1:14:46
to be in stuff that attend so anything really, indoors is probably you

Rachel 1:14:49
know, my husband and I both used to work for Disney so they used to go all the time. And so they definitely you know, they're they're not sheltered from that but they they really had a good time and And anybody who doesn't know it can check out the children with diabetes website or just look for friends for life Orlando and get some information. It's a good time. Very cool.

Scott Benner 1:15:09
Hey, so can I ask you before you go? What did you used to do for Disney?

Rachel 1:15:12
I was a zookeeper, an animal keeper at the Disney Animal Kingdom Lodge. Yes, I took care of our giraffe and all our stocking birds over there.

Scott Benner 1:15:23
What What, what like did you do in your life that made you I don't know the right person to take care of a giraffe.

Rachel 1:15:31
Um, I studied I studied biology and wildlife management. And when I moved down to Florida to work for Disney, I actually wanted to work in the stables. You know, they have all the horses there that are in the parades and different things like that. But there weren't there were any openings there. I just started working in like the as kind of an intern in the animal husbandry department. And then I got hired on at at the lodge. So it was it was really fun time.

Scott Benner 1:16:01
So when your husband

Rachel 1:16:03
I met him at Disney. Yeah, he was doing a different job. But I did meet him at Disney

Unknown Speaker 1:16:07
to

Scott Benner 1:16:09
a wonderful world. Okay, so that's really and now neither of you are there anymore.

Rachel 1:16:14
We don't we have a couple of our family members still work there. My brother in law still work there and and my cousin, but

Scott Benner 1:16:21
this is excellent. Do you have your own pet draft? Now?

Rachel 1:16:23
I wish homeowner's association will let me so we just got

Unknown Speaker 1:16:31
a couple of dogs.

Scott Benner 1:16:32
Yeah, we petition. We petition them every year. And they say no, no draft. Sorry. Yeah. That's amazing. Well, I really did you. Do you feel like we covered everything that that we should have?

Rachel 1:16:42
Yeah, absolutely. Excellent. Like that plug in there at the end.

Scott Benner 1:16:45
I really appreciate that. Thank you so much for doing this.

Unknown Speaker 1:16:49
All right. Thank you.

Scott Benner 1:16:55
Thank you so much, Rachel, for coming on and sharing your experiences with the Medtronic and the beta bionics artificial pancreas studies that you participated in with your child. Appreciate it. Let's also take a second to thank Dexcom on the pod dancing for diabetes and real good foods for sponsoring the show. You like the show? They did it. They're paying for it if I you know. I mean, you don't know my life. But this podcast takes up a lot of time. And if I wasn't making some money doing it, my wife would, you know, I don't think she liked it too much. That's why I'm saying there's things to do around the house. When I'm not doing them. It's a little easier to say I'm not doing them because I'm doing the podcast. But hey, look, the podcast, look ads. Right? It's cool. Let me keep going. Please don't yell at me. dexcom.com forward slash juice box, my omnipod.com forward slash juice box dancing the number for diabetes.com. And it real good foods calm you'll save 10% with the offer code juice box. A moment ago. For humor sake. I may have alluded to the fact that I'm scared of my wife and I she is not in any way. I would never say that. It was just I don't I I'm just I'm scared. She's gonna hear this, please. I'm sorry. I'm getting upset. My voice is coming away. I'm fine. It's just a nervous condition. It's got nothing to do with her or the time we spent together. I just you know, I really appreciate that. You guys understand that? I have to take the heads and it's nobody's fault. There's no fault. It's wonderful. Everything's fine.

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