#783 Survey Says
David runs T1DExchange and he has type 1.
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Scott Benner 0:00
Hello friends, and welcome to episode 783 of the Juicebox Podcast.
David Walton is on the podcast today David is a type one who runs T one D exchange are always complaining. Things don't happen fast enough. Why don't they come up with a new adhesive quicker? Why don't they do this faster? How come they don't update that better? Alchemilla? Well, because you have to do research and it takes people to do research and people don't open themselves up to research. So David and I are going to talk about that today and discuss how you can help right from your sofa. I tell you, every, every episode like right here, I say, Hey, if you're a US resident who has type one diabetes, or you're a US resident, who is the caregiver type, you must have heard this by now. Go to T one D exchange.org. Forward slash juicebox. You join the registry, you complete the survey and you're finished. That's it. It takes like 10 minutes, and I say it and I say it and they say it. Okay, sorry about that. Nothing you hear that Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Anyway, this is a good conversation I'm going to explain why this is so important to research and and I hope you guys check it out. Give it a try. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. Today's conversation is also sponsored by the Contour Next One blood glucose meter. This blood glucose meter is everything to me, it is the easiest to use easiest to carry most accurate blood glucose meter My daughter has ever held, used had in her purse. I've never seen one better is what I'm saying. Contour next one.com forward slash juicebox. There are links in the show notes of your podcast player and links at juicebox podcast.com. To contour G Vogue, T one D exchange and all the rest.
David Walton 2:19
Hi, this is Dave Walton. I'm the CEO of T windy exchange and have been in that role for the past three and a half years. I've worked at a number of device companies and diabetes since 2006. And in healthcare my entire career also have been living with type one since January 1996, while diagnosed while I was in graduate school, and have a 13 year old nephew with type one as well. So very focused and committed to working in the diabetes space and specifically trying to help improve the state of affairs for people living with type one.
Scott Benner 2:56
Well, thank you for coming back. i You were on episode Hold on a second. I will find it. I thought I had it. You were on a wow, Episode 330 April of 2020. This episode will be more like 800. So I've that I've been as busy as you have been, I think.
David Walton 3:16
Yeah. And that was right in the beginning of COVID when we spoke so it was definitely a unique time. And we're sure
Scott Benner 3:22
a lot a lot feels like it's changed since then. Well, you know, we'll give people a little bit of an overview of your of your life with type one. But I know we talked about it before. You said you were diagnosed in 96, which sticks in my head because that's the year I was married. And makes me feel like you've had diabetes a long time because I know I feel like I've been married a long time. Anyway, that I'm sure my wife won't hear that. diagnosed in grad school you said
David Walton 3:50
yes. After after one semester and I I literally had just begun dating my now wife. So we just hit 25 years so we've been almost the same trajectories you have. But literally it was within a week of us starting your relationship Yeah. that I got the symptoms first are presented themselves.
Scott Benner 4:16
So how did they hit your nation? Lucite
David Walton 4:20
telltale, yes, couldn't quench my thirst i i Actually chug this. At the time. I think there was the Magnum at 711 It was like at least 44 ounces of soda. And it was birch beer. I was so thirsty and I wasn't thinking that it was diabetes and sugar would we just exacerbate the issue. So that certainly wasn't wasn't helpful to my plight. But it was about a week of that going to the bathroom like 15 times a day just feeling totally different dropping 15 pounds, but when my vision got blurry in class, I couldn't read an overhead projector from sitting back in the in the room and I said Why doesn't the professor adjust this? And they said, What do you mean? It's perfectly fine? And I'm like, No, it's not like yes, it is. And that's, that's when I looked at someone else. Yeah, that or I better go to the Student Help and something's not right. Yeah.
Scott Benner 5:15
Well, you can't see things that Yeah. Although I interviewed somebody recently that said, They ignored their blurry vision for weeks. And I thought, Well, I must be a baby. If my vision I'd run right to the Yeah, wouldn't be
David Walton 5:29
day I walked in that afternoon after class to the student health because that blurry vision definitely threw me.
Scott Benner 5:34
Yeah. No, I imagine it would even mean you weren't that young. You were old enough to be able to think through your problem a little bit. I bet you if it would have happened when you were a freshman, you wouldn't know what to do. Maybe. Okay, so you've had diabetes quite a long time. I mean, that long. Did you start with regular an MPH? Yes, you did.
David Walton 5:55
As humans are the MPH I had a one touch or one touch to glucose meter was handed to me at the hot pen at that. At the at the hospital? And yeah, I was kind of off to the races. I was put on a dosing regimen that I realized years later wasn't necessarily the right one. And it was on that for probably 1213 years. Yeah. You think I was on that regimen for 10 years? Because I you know, I, I was doing okay, but not great. My agencies were always in the sevens, but I never could get below seven. And I'm like, Why? Why can I get bilobed And I wasn't testing a ton, maybe three to four times a day. And I started working at animus, the insulin pump company that j&j acquired and then later divested, or just exited the business. And I started reading about formulas for dosing and things for pumps, books and things to educate myself, because I've never worked in the industry of diabetes, I just had dealt with it myself. And I, you know, I learned about these rules, rule of 1800, the rule of 500, with your insulin to carb ratios, and all that, and I, I just realized, well, why am I on the ratios I'm at, they don't even come close to these formulas. So I just made the change that day at work. And so let's see what happens and my blood sugar instantly got better. And my next day when See, I came in, and I had a six, eight, or a six, nine and my endos. Like, what, Hey, what did you do? I said, I, I changed my dosing to one that matches the formulas. He just gave me this look
Scott Benner 7:51
like, Oh, those.
David Walton 7:55
But you know, I'd seen a couple different endocrinologist, one in a prominent center out west and other who worked for an insulin company, and neither of them brought it up. Yeah, nor third one. So this was like, my third endocrinologist that I because I've moved around. So it's, it was definitely a lesson in that, you know, there are certain reasons like if you're not creating, if you don't present certain problems or issues, an endocrinologist may not focus on something. And if I were having a lot of lows, or if I had a much higher rate when see, maybe they would have looked at that, but because I was like, Yeah, you're kind of doing okay, so I was in that little middle zone where it just, it wasn't really worth. Yeah, well, they, you know, because I have to believe that they were knowledgeable of these dosing rules, but who knows, maybe, maybe not. But one would think well, the
Scott Benner 8:49
story points out that, I mean, why research is so important, because basically, you read research that told you, oh, I could be doing this differently. And the research that was probably common at that time for what a good a one C was, was telling the doctors that you were okay. So you weren't somebody to fiddle with. Because the seven Wow, that's terrific. Why? Because the ADA says, that's good. And so that, you know, so they're kind of doctoring to these rules that comes from research, and now the research gets better and better and, right, the American diabetes Association lowers that target, you know, when I think that's what the doctors work off of, they, you know, whatever, whatever ADA says they're like, Okay, well, that's what we tell people.
David Walton 9:32
Yeah, no, I certainly the the ADA standards of care are that they update every year that they're extremely important and but I wasn't actually hitting the target. I was close, but I might agencies were ranging between seven two and eight. They were in like mid mid sevens kind of thing. So, but it wasn't, you know, a nine or a 10. So what and I wasn't having a lot of lows. So but you know, the The old dosing logic, you know, the one unit for 15 grams of carbs or one unit to correct 25 milligrams per deciliter. That's what they had me on that ratio, which apparently year many years ago was a common thing to start people on. I don't know if they often move them off of it, or what I haven't really looked into that. But I know, I've had educators, diabetes, care and education specialists, now we call them, you know, comment on how earlier in their career, that's what they dealt with a lot, they use that that ratio, but getting more data and research and people looking at these topics, they realized, and particularly with pumps, where you're gathering the information, you can track and analyze it that, that's, that's not right, and you can look at someone's total daily dose and, and their weight, their body weight, and, you know, there tend to be these averages and ranges that that work. And that's not what I was on. So again, I switched it to a one to 10 from one to 15. And I switched it to one to 35, from one to 20 where it was at one to 25 So I was constantly I was under dosing for my food, and then overcorrecting and I was just in this little yo yo thing, and it was, it was enough, it was keeping the, you know, getting the ultimately back to a point in between meals, or maybe I was getting closer to closer to where things should have been. But it wasn't ideal by any stretch. So that was that was, you know, definitely a big aha, because I just started using a pump the year before you you are collecting this data every day. So you can analyze it, or someone can analyze it and help figure that out. Well, especially if
Scott Benner 11:49
people can't see you, but you're, you're a big person to like you're tall and you're strong and like one to 15 seems, you know, I mean, Arden is a woman and you know, gets a period and has a bunch of hormones going on. But she would laugh at that if I if I covered art and one for 15 I might as well not give her insulin. And you could pick it up with her across the street is my point. So it's, it's just really, it's interesting how they're like, Well, this is the standard, give him that one. And then no one ever goes back and looks at it again. That's the fascinating part is that you turn it on, it's like turning the heat on the ad. And then everyone's always hot, and no one remembers to go back to the thermostat and go, Oh, we could probably adjust this. Here's just the it's common, honestly, through the years.
David Walton 12:35
But you know, situations like like that, you know, we t when the exchange, you know, we call ourselves a real world, you know, evidence organization, like we gather information from people in the real world, not not in kind of these artificial clinical study environments that just don't aren't the way people typically then lead live their lives on an ongoing basis. And, you know, we're trying to gain insights and understand things about what's happening when people use products out in the real world. We also help recruit for study clinical studies that people are doing, because we have to get these products out faster. I mean, it is amazing when you read how many times that study can't find people that way behind on enrollment. And I've actually had kind of strong discussions with companies like why do you accept this, if you work with some sites, some clinical sites that aren't recruiting fast enough, like we've got almost we've got 20,000 People who have registered with 20 exchange to be a part of research and to participate, we can help find people and send them to your site or, you know, go to a link virtually, like we can help speed these things up. And then so the faster the products get to market great. But then there's this whole second phase of learning and knowledge about then what happens when people use them in the real world and do the things they're going to do because they're also living life. And, you know, we're trying to get devices connected into our registry so we can see people CGM information and see how it relates to the others information they provide the surveys they respond to, and that kind of, I think there are a lot of things that can glean from that, you know, we did a big project with vertex which was presented at some medical meetings, which is why I'm naming them and talking about it. You know, they're working on this really interesting beta cell replacement therapy, which I think is our online community is thrilled to hear about and very excited about the prospects long term. You know, for that, that kind of a solution there are other companies working on it too, but you know, they wanted to understand severe hypo glycemia and impaired hypo awareness and, and how often is it happening? How often do people need assistance with their severe high bone what were the circumstances around it and We looked at CGM data for 1000 people on top of you know, a total of 2000 survey responses about different aspects of that. So we could really contextualize it and they had questions they wanted to understand because their product and the study that they're doing is for people who have this severe you know, hypo, an impaired hypo awareness. So it's, it's, you know, it's extremely important to get more people in to research it is going to slow we could absolutely get new products out faster. And I mean, I'm talking the entire industry, new new sensors, new pumps. You know, I, we have these conversations like every week with a company that's, you know, enrollment is slower than we'd like, you know, every time ticularly if they're recruiting children, as well.
Scott Benner 15:56
I have a quick ad break here and then we're gonna get right back to Dave G voc hypo pan has no visible needle, and is a pre mixed auto injector of glucagon for treatment of very low blood sugar. In adults and kids with diabetes ages two and above. Find out more go to G vo glucagon.com forward slash juicebox G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk. I'm going to read you a review that comes right from contour next one.com forward slash juice box. Same product works well. And half the price of what I pay after insurance at the pharmacy will definitely buy again. Amazing deal cheaper for me than buying through insurance. I got 50 more strips for about the same price expiration dates were good. Plus they arrived very quickly. Very happy with this purchase. Contour next one.com forward slash juice box we're talking about the test strips that work in the Contour Next One blood glucose meter. Head over there now and find out what I'm talking about. Do you really know what your test strips cost you because it may be cheaper to buy contour next test strips over the counter without a prescription. Again, you could learn about this at contour next one.com forward slash juicebox here's why this is important. I don't care if you have the latest CGM Dexcom G six libre three Dexcom G seven, whatever you have. That's terrific and it's amazing. You still need a good accurate blood glucose meter. That's why I'm asking you to look into the Contour Next One. This episode might be sponsored by them. But my daughter's every day is supported by the Contour Next One blood glucose meter and is the one she carries and uses daily contour next one.com forward slash juice box it is small, easy to read, accurate and easy to carry. There is nothing more unique. This whole business about the test strips maybe being cheaper and everything that's a bonus look into that on your own but get the damn meter it's freaking terrific. Contour next.com forward slash juicebox G vo glucagon.com forward slash fuse box links in the show notes links at juicebox podcast.com. And even though they are not a sponsor of the program, I do benefit when you go to T one D exchange.org forward slash juice box. But I think you can hear in this episode, that I'm really just trying to get everybody behind. Behind the movement that helps bring where we are with diabetes forward. We need you. We need you to fill out the survey. That's it. Just Just keep listening and Dave explains it again. I give up it is so hard to get people to do stuff like this. I know it seems like it's a big deal, but it's not t one D exchange.org forward slash juicebox join the registry, fill out the survey and just like that you've helped you've helped move things forward. Alright, now let's get back to Dave and thank you for listening to the ads I really appreciate it please use my legs if you're gonna buy something
Yeah, well so it's it's to flip your life around and what you do for a living and kind of think about it from somebody else's perspective. When people say well, I don't understand like why is this only recommended for children six and older? It's because they couldn't do a study for children six and under. It takes longer. Well don't worry, we're getting to it. We're getting to under two we're getting it's because people don't do the studies and that's the only way this stuff happens. And I Dave I do my part on every one of my episodes when opens up, I'm like, go to T one day exchange.org forward slash juice, but I just keep putting, it's, I mean, a lot of people listen to this podcast. And still I don't push that many. Like, like, you get people to convert you, at least in my heart. I'm sure you guys are happy with how many people come through the podcast. But for me, I know the number you told me when we met, like, we'd like to add this many people. And it's a lot. And then you I don't know, I've become Ultra aware of how difficult the job is to get people involved in, in research. And I mean, I understand it from their perspective. But it's just I mean, you're not asking people to go to a site, you're not asking them to, you know, cut off a finger to see if it grows back like, right, you're like, take a survey, can you just take a survey? You know, let's
David Walton 20:46
take a 10 to 15 minute survey, right? And then from there, we will follow up with other opportunities. But that's, you know, if it doesn't fit, if you don't, you're too busy at the time, what have you, and it could just be another online survey? Or it could be, Hey, would you be willing to connect your Dexcom, your clarity account and just you connect the login information, we have a simple little couple of fields you enter in and then boom, it's done within a couple of minutes. And, you know, we're going to have, we're going to have another few 1000 People do that in the next six months. That's cool. Yeah. So, you know, research. And I've, I believe that most people just have this ambiguous view, and they hear research, they think I have to go drive somewhere and deal with hassle and fill up forms and give blood and do this and the other. And there are times where there might be a study that is fairly intensive with a new treatment, particularly if it's something being put inside your body. But there are other times where it's just it's not what you think it's not that big a lift, you know, and oftentimes, there's compensation to account for if you have to take time out and go travel or go do this or that. So, you know, it's we tried to spend a bit of time educating people that research can mean many things. But it can also it can be just what are your attitudes about doing something and so that these companies that are working on things understand, using your product may be more burdensome than you think or going to get screened for, or have your immediate relatives screen for auto antibodies. People don't really understand where to go or how to do it as an interesting program with T ones attack that certainly they should look into for that. But it is it is something that we spend a lot of time trying to de-mystify it and explain to people here is this is what research is, here's why it's important. And there is no doubt we can all pitch in and help make things happen faster. And your point about the six year olds or what have you. Yeah, you know that these companies start with the adults usually, and then they work their way down. You know, there are additional rules and safety measures when you're involving children in any kind of research. And so, you know, understandably so it's something that you have to be very have lots of safety data and really understand even before you then go to the official study to get the indication for that. And sometimes it happens because there are doctors out there that are willing from what they've understand of the research that exists. They're willing to try it out on some of the patients. And then you get that, you know, some of that volume of information builds, you know, just mean that happened with CGM and dosing. Right. It used to be adjunctive therapy, but so many people were dosing and not doing finger sticks and just going off their CGM. And some of that information that was gathered at 20 Exchange help with that years ago. Some of that information is what ultimately kind of led to the label change so that you are, you know, permitted to dose your insulin off of your CGM bacteria enough and yeah, so in that replace BG study they did. So
Scott Benner 24:11
it's so you're saying that in that exam, in that example, people had CGM, and they were like, well, I This thing's accurate. Most of the time, I'm just gonna, I don't feel like testing before I eat i dose and then enough people do that. And they gather enough information that it becomes its own study, the fact that it's not even on purpose, then suddenly they go, Look, this is what people are doing. And it's working. And then you are able to show that to the FDA and then move forward. And the company, by the way, who can say look our products doing what we expected it to do. This is amazing. I don't know. I mean, for me, I would I think I would take some pride if 10 years from now, I looked up and saw I don't know a two year old kid with diabetes wearing a the G 97 sensor, whatever. It'll be 10 years from now. Right. And and this kid is smiling and laughing and living his life and the mother doesn't look like she's about ready to pull her hair out of her head or, you know, the parents aren't arguing their lives are comfortable, I would think, well, I did that, like, you know, on some level, my participation helped us get to this place. And I do take. But I think when I think by I try to imagine why people wouldn't do this stuff. It is my inclination that it's what you said earlier is that they're, they're afraid that they're going to be asked to do something that they don't want to do. And I don't have enough time in a 32nd spot to explain to them like, Look, if you get an email, and you don't want to do it, just don't do it. Like the length team. Right? Yeah. Like, it's just, you know, absolutely,
David Walton 25:42
absolutely. And I got to do want to make the distinction of, you know, participating in research. And that's our goal, we want people to join the, the the to end exchange registry, and start that it's a very simple lift to be able to contribute. And, you know, the more people we have, then when unique situations come up, and someone says, We really, do you guys have people that have had transplants, we want to look at this particular issue, and it's hard to find these people. Well, yeah, we happen to have 78 people that have had either kidney or pancreas transplant, and oh, what about this, what about other transplants, and we can be the law of big numbers, just if it's a very small percentage, but we get our numbers up, we can find we have people that will, will meet some of those criteria. So we're able to help people, you know, and help recruit for some studies that are very difficult, but I do under and we should definitely I should emphasize, you know, their products are labeled or indicated for a specific purpose. And absolutely, people should, you know, we're positive stick to what that is, you know, but if their doctor is talking to them, or they're, they're looking at something that there's a lot of safety information out there, it's just not officially in the label, like, well, then, you know, there might be an opportunity to, you know, talk to a clinician about doing that, or what have you. I was working in industry, I was doing lots of testing of sensors and checking my blood sugar and looking at this data, and I knew how the sensor performed with me individually. Some people, the sensors can be much more inaccurate. Yeah. And earlier versions definitely were less accurate. So, you know, if people were hesitant to dose insulin until it was absolutely in the label, and their doctor said, Yes, I will absolutely understand that. But I was in the center of information gathering and seeing this and I, I knew a lot of other people that were and and then I was monitoring what was happening. And I was I was constantly vigilant, like, Oh, if I see my blood sugar dropping, and maybe maybe the sensor was reading higher than my blood sugar really was and then I gave it too much insulin. And so I was always focused on that. And you know that. So for me, it was something I was, you know, willing to do, because I felt like I understood those risks, and I could mitigate anything that happened. But
Scott Benner 27:59
I listen, I wouldn't do anything blindly because anybody said it was okay. Arden's been sick away at college this week. And we were fighting high blood sugars. And I said, I texted her and I said, Look, we're going to have to make like a big Bolus here. You got to test first. Like, I'm not just going to, I'm just not going to go off the CGM. Like I like I'd want I want some. You know, I want some I want other numbers. Like, let me let me say, so she tested CGM was mean, she was in the low too hot. She was like around 220 or so I think the CGM had her at like 224. And she tested at like 218 to 15. Something like that says like, Okay, let's do it. Like, let's go for it. But I don't know. Like the, the longer you have diabetes, the more you recognize the moments when you just want to like, let me just let me just check here. Like, you know, like, let me make sure I and your point about it just doesn't work for somebody, some people. CGM, a Dexcom, specifically works terrific for Arden. And I'll have people contact me and say I don't understand how you like how can you use an algorithm? My kids CGM has never anywhere close to what their blood sugar is. And, you know, you respond back you say, Look, do you have a an accurate meter, maybe you're checking with a meter. That's not accurate? Maybe the CGM is more accurate than the meter is maybe your kids not hydrated, maybe? Like I don't know. I can't tell you what the reasons are. But there are checklists you can go through to kind of get yourself better. And then at the end, I have met people were just like, it just doesn't work for me. And I've asked, I mean, I've asked people at Dexcom about and they'll say, Yeah, I mean, sometimes it just doesn't work for some people. We don't know why. You know, so you got to be careful and do what works for you. You can't just say, Oh, the box says it's okay. I'll do it. You know, I mean, I don't know.
David Walton 29:47
And the more I've worked in kind of the industry, I've worked for startups, CGM companies, where I was wearing SIX sensors at a time and then checking every 15 to 30 minutes on my fingers and all that and You realize the variability that exists both within one person, but more importantly, between people in the inter and intra variability, like it's people, there are just, there's a lot of different operating environments out there for the human, the human beings, and, you know, these, these products work really well, and a lot of people that, that, you know, there are some people that just some people they won't see reads lower for a certain average glucose than someone else's. And that's really come out a lot in the last several years where you can have these ranges in a onesie with the same average glucose, and just the way that hemoglobin and the way red blood cells work, and certain people, you know, you know, African Americans have an agency that's 3.3%, higher than whites would be with the same exact, you know, glucose on average. Really? Yeah, because of the way that, you know, that was all developed. And so, you know, that's another aspect that we, you know, we're focused more on now is, can we help with diversity in study recruiting, because people are slow with recruiting in general. And they tend to skew towards, you know, white and female, and a lot of different studies, I've seen NIH data for over 20 years, you know, our own registry, you know, historically, you've had more participation from from that group, and not as much, you know, from, you know, different groups of people of color. So, we're trying to work on what can we do to, to get the word out to more people to explain ourselves better, and what what they're really participating in, when they join us and work, you know, we've, we've been working with some great, you know, influencers out there on social media, who, you know, are good about getting the word out, and, and, you know, messaging in the right way, where it's relevant. So that's been, you know, positive, but we have, we have a lot of work to do. Still, we're still not where we want to be to be completely representative of the type one population in the US. Well,
Scott Benner 32:01
you mentioned the law of big numbers earlier. And I imagine that that's probably why this podcast does, well, driving people back to T one D exchange, because I have a larger group of people that I'm reaching to, I've learned, just getting people to click on things, you know, for anything for ads for my own site, you know, for content that I've made, that I know helps people, it feels like, you've got to reach 1000 people to get 100 people to look up and that gets 10 people to click, and that makes one person say yes, it's it's a, it's hard. It's hard work.
David Walton 32:35
Getting people to stop what they're doing and do what you want them to do, because there's a greater purpose you're solving for. Yeah, it's not easy. And I know, our marketing team is, you know, in our registry team are doing a good job. And part of it is working with people like you to get out to different audiences, and people who are credible and have a relationship with with a group of people. Like, that's important and important. That's very important, you know, kind of tactic for us to get more people to participate. It's been, it's been pretty successful. And we, you know, we add over 100 people a week into the registry. And that's, you know, because we've got, it's not just, you know, we're empowering, others are connecting with others who are able to reach out to all these other people. So that's definitely something
Scott Benner 33:23
well, I'll share something with you that it's a little backroom, but I don't mind people hearing it. I've learned using tea, Wendy exchange, specifically as an example. And maybe, maybe this bleeds into other stuff, but I can explain it. I can say, look, it's easy, you know, hey, here's some people have done it in the past. Like, I've gotten feedback from people, I've gotten photos, people like, Hey, I'm at the airport, I'm going to do this thing I'm on I'm on a Dexcom. I'm testing Dexcom adhesives, right? There's something people complain about all the time this girl is, is doing it, she's wearing a bunch of I saw a bunch of G sevens on her arm, and she was flying somewhere. And she was super excited. And they compensated or, and I share that with people thinking, well, there's something people are passionate about, like adhesives, and nothing but one. And it's interesting. I can say here, because there's no ad here. But I'm not allowed to tell them that. Like specifically, like I can't incentivize people to do a thing. Like, can you explain that? Like, why can't influencers like there's a law, but explain it to me so that they can understand it? Do you know what I'm talking about?
David Walton 34:30
Well, I mean, when you're involved in kind of, and I think there's a difference between the study versus there are different rules around a study and what you're allowed to compensate for, versus, you know, a product that's out there. And, you know, the whole notion of if a company is, you know, they have their own health care compliance rules about what do they believe based on laws is an acceptable way to compensate people who might be doing something and if you end up you're paying people to you As a product, that there are all kinds of rules that can come into that. It same thing like even with copay coverage and other things, there are all these rules and and rules, if someone's in a federal health insurance or you know, different Medicaid, you know, we would have these programs where Oh, you could, you could upgrade to the next pump, when I worked at anatomist always had these little asterisks with all of the little caveats. And if someone was with DOD, or the VA, or a state, Medicaid or Medicare, because the government has to get best price and this and that, and you're paying, you know, there are all these considerations like that, right? Companies need to be mindful of so they may, you know, I don't know if your example was around like a research study, versus actually, like, using a product,
Scott Benner 35:53
I had an idea. I know, you know, this, because we've talked about before, but I had an idea a year or so ago, when I came to, to, to Debbie, and Dave, and I said, I want to do a drawing, I said, I'm going to we'll pick a number, whatever a reasonable number is. And then when this many people get on the on the exchange, will, I will drop them all into a drawing, and I'm gonna go live with one of them for a week and help them with their diabetes. And your lawyers were like, no, no, you are not doing that. And so, but my bigger point was, is that when people learn, like, I have no trouble saying it, like, every time someone signs up to the registry, I make money. It's not like, you know, it's not like go buy a Ferrari money, but it's money. And so when people learn that, that drives them to sign up. And that is the thing that I started talking about that, that surprised the heck out of me, which was, they weren't even doing it. For all the great reasons that I laid out. They were trying to help me like they appreciated the podcast, and I call if Scott's gonna get Oh, good, we'll do it for Scott. And I thought, I mean, that just first of all, it floored me personally, I didn't expect it and it was lovely. But I thought, how are you supposed to get the average person who's not connected to a podcast host or you know, somebody on Instagram, they love that they they can make the leap in their head, you know, this must help him if I do this. I'll do it. It's I don't know, your job seems really difficult to me that that part of it is my point, honestly.
David Walton 37:24
Yeah. Well, I suspect the lawyers may have been more concerned about you living with someone for a week and like,
Scott Benner 37:33
listen, I was worried about that. But, but no, it's just, it's just interesting that you, you know, like, I'll say, like, Oh, can I say this? Can I say that? You know, trying to get people interested? Like, No, don't say that. Don't say that. And it's, and I've noticed that too, with other other relationships I have. Like, I'm getting ready to do a thing for xirrus. Right now I'm getting ready to do an episode Jenny and I are gonna do talking about how to use glucagon. And that's something that was my idea. I went to them. And I said, I don't think people understand how to use their glucagon. I don't think they understand when to use it. I think that we have an opportunity here to talk to a lot of people and help them. And so they agreed and they wanted to do it. But then once you do with the meetings, and the you know, you can't promise things to people, like there's so many laws, or it's very, it's it almost makes it hard just to talk like a person. So you can say to somebody, Hey, glucagon is important. Here's why. You know, it's tough, you know? Well,
David Walton 38:32
I mean, just watch the evening news or the morning news or any news and listen to a quote unquote, patient with rheumatoid arthritis say, you know, for my moderate to severe rheumatoid arthritis, I like to use x. Is that really how people talk really, that? They have to put that in? Because the indication is for moderate to severe rheumatoid arthritis? Probably not for me, you know, I don't know the classifications fully, but that obviously is like what their official indication is, there's characters categories and technical definitions there. So you know, I understand like, you have the FDA gives you you have claims and you have things you're able to say because there's, there's evidence for it. You've, you've provided substantiation, and so you have to stick to the script, you can't go and make claims that are off. I mean, we had some people tell us an animus someone made a presentation and they had Yoda wearing an insulin pump. And the regulatory was not happy with that at all. Because our pump isn't indicated for Yoda to wear. It's only when he met the age requirement, didn't they? Oh, wait, no, yeah, it's like literally, so someone had to take that off of their PowerPoint
Scott Benner 39:52
and internal an internal PowerPoint right. Not even like something that the public was seeing.
David Walton 39:57
Yeah, well, that I think this person They've been showing it to others.
Scott Benner 40:02
Okay, but isn't that that's, that's a great. That's a great example of where common sense intersects those rules because there's no one who looks at that and thinks, oh, well, Yoda is real, and obviously has diabetes and wears an insulin pump. But it's, it's fascinating. But I guess that could be an enticement to Right. Like, that's how it could be looked at, like if a child saw that they could be enticed to want to use that. I mean, who knows who's thinking that way? But that's, anyway, all these angles
David Walton 40:32
that I appreciate I'm, I feel fortunate that I spent as much time in industry as I did, you know, I was at j&j. 11 years, and then a number of smaller companies, device companies agamatrix. And understanding the realities of what rules have to be followed what constraints they have, I had to operate under, it does give me an appreciation for like why industry does certain things. It doesn't mean I, I think everything they do is right, and I agree with it all. But I certainly understand this is, this is probably why they're doing it because I remember the conversations I had with quality with regulatory with legal medical affairs. So it's, there are a number of things that you need to get, I'd love to see improved. But I also understand some of the realities, that can't just happen overnight. But the one of the areas we can is gather this information about what is actually happening out there in the real world and gather the information, conduct research, and we have research and data scientists on staff with PhDs who are very good at what they do. And we're able to do a lot of that, those type of things. But we also just literally, forward study opportunities to our, our registered participants, and try to encourage them to participate. And everyone else is doing all the heavy lifting on the study, we help get as many people to look at that opportunity and try to sign up for it. So you know, you mentioned adhesive, we've done a couple of things. For a research organization, looking at adhesives for a CGM company, we've got another company now that wants to do a survey of people who use a certain patch palm to understand how, how satisfied are people with their adhesive. Because this other company wants to use that adhesive as the litmus test of like, maybe we should be targeting that. So there's a lot of things we can do. Because we have 1000s of people who use this, you know, hundreds of people that use that, and we're able to go target them and get a certain percentage to respond. And, you know, we there's often some, some compensation to participate in, in that type of thing. Because you know, it's people's time and we understand like, you have to, yeah, there's a fair market value, you have to pay people for their time, you should pay people for their time, if you you want to get as much participation as possible. Not everyone, you know, continues to stop doing what they're doing to go help you out because you need something. And that's, that's a mantra that, you know,
Scott Benner 43:10
we've tried to live by. Yeah, to support the people who are supporting the work. Yeah, yeah. Well, it's, it's so you could do this with a clinical study. This could be industry and this could be academic, right? Like you support all those three ideas.
David Walton 43:26
Yeah, we've had researchers out at a university say, hey, we like during COVID I want to do a survey on telemedicine users and see kind of what's, what their experiences have they done it and what type of visit did they do it with? But this was back in like, late 2020. So we did and we were able, very reasonably to recruit. Had it was it was maybe a couple 1000 people to who completed this information for this Dr. Krause and at UC Davis. And I think she just published on that work recently. But you know, sometimes it could be literally a five minute survey for on behalf of someone, some researcher who has who's really trying to nail down something and understand what's going on, or gain insights in a particular topic. So we'll work with companies. You know, we will work with an academic center that isn't recruiting as many people as they want from their patient pool. So we'll say Well, here's how many people we have in within an hour driving distance of your location, we could send out something to those people. And we did that for someone who had like a novel biologic for newly diagnosed to try and help preserve whatever beta cell function was left by halting the immune reaction. The goal really is to move before the symptoms present move earlier when people are kind of in those stage one and stage two of of type one like before the symptom is present themselves, but you are having that, you know, you're going down that path. And so that's something that we're definitely getting more involved with. But they're in their accompanies, and, you know, prevention bio may get approval here in four weeks for their their product. And something
Scott Benner 45:20
must be happening with that, Dave, because they're on my schedule pretty soon, so they must be pretty hopeful. Yeah.
David Walton 45:26
You know, the FDA has a date where they have their, quote, unquote, required to give a decision. I think it's November 17. Yeah, literally, it's, it's four weeks from yesterday. I think that it's my maths, right. Yeah, that's that there's, that's when the producer date they call it where they should be hearing about whether or not you know, they obtained the regulatory clearance to market that tip lism AB.
Scott Benner 45:57
They've been on before. And it was just, like, mind blowing, like what they were trying to accomplish in just the even the thinking outside of the box, because my daughter was diagnosed after getting hand Foot Mouth. And the way he was talking about maybe we could slow down like, like, put aside what we're doing here for a second. Like, what if we just inoculated people against Coxsackie virus? And it because if Coxsackie starting that many people down the road of type one, I thought, My gosh, like, is it possible that my two year old got Coxsackie? Which, of course, you know, she obviously had markers for type one, and it kicked the whole thing off. But could she have lived 10 more years without getting sick? And that way or 20 more years? Or like, you know, really?
David Walton 46:47
Yeah, who knows? Like I, a couple of months before I was diagnosed, I had a nasty stomach bug. I don't know exactly what it was, I just I was green. And like, is the only day of school I missed because of sickness and two years in grad school. And, you know, I thought it was bad Taco Bell I had the night before and in West Philadelphia. And that's what I just thought. And then as I started working in the diabetes field, I started reading about, you know, enterovirus coxsackievirus. That the how often it's associated with it, and and even some of the research more lately, where they're saying like, they're seeing it in the pancreas is of 70 or 80% of the people who have type one, when they've looked at tissues. So it's at diagnosis. So it's, I think, it seems like there's growing evidence about that relationship. And you could see very different approaches to public health, you know, because of something like that. Yeah. Well, and yeah,
Scott Benner 47:52
I'll tell you, the reason I brought it up, just to be transparent is because they obviously can't, there's some companies, you're not naming by name on purpose, and I hear you kind of like talking around it artfully. But anyone who's listening who's aware of the diabetes, space, all the big things that are happening, and all the things that you want to end exchanges in is generally speaking involved in. So take the damn survey, like that's just go it seriously. 10 minutes, I took the survey for Arden back when she was a minor. And then she takes she had to take it as a, you know, when she went over 18, she took it again, first job and yeah, yeah. And it's just it's not difficult. I did not run into one question where I thought, Oh, I don't know the answer to this. And they're like, now my data is helping somebody. And it's and moving us towards all these things that everybody wants. And you know, you were really passionate about it in the beginning talking about that things could happen faster, and they could happen probably better. You just, you know, this is the process. And we don't have enough people to do the studies.
David Walton 48:55
Yeah. And where, you know, where I've had this kind of, I would say puzzling discussions with a couple of companies where they're then telling their sites, hey, we want you to work with T Wendy exchange. And some of the sites say yes, and then there are a couple of sites that say, Well, no, we like to work with our own patients. We don't want outside patients coming into our clinical study, they want to deal with patients that have been going to see them they know who they are, they have their information in the electronic medical record. They know there'll be a good study subject. And I'm like, this is the problem, right? If we keep doing things the same way, we're gonna get the same results that and those results aren't great. Right? JDRF had some stat about, you know, how many studies fail because they can't recruit enough subjects or in fast enough time? Because every day, you know, it costs money to put on a study and you're, it's just, it's an expensive proposition. And then if you're, you know, you're just dragging that on. It's then there's competition. It's just very difficult. So I said, Why do you allow that? You're developing a product you're trying to get in the hands of patients, the patients want it. And you're going to allow someone's attitude of, no, I don't want to have outside patients I need to have, like, the people that are in our registry, are people with type one who have an interest in research, you've already gotten an enriched pool. So one of the companies we're talking to absolutely agrees with that. And so they're circling back talking to some of these sites, and they're going to be a little more insistent. And if I were in their shoes, that's exactly what I would do. What Why are we tolerating this, let's move forward, let's get things out faster. And then once products get out faster, it's out when they're out in the real world, then you learn new things and new opportunities. When I worked in pharmaceuticals at j&j, that was like, the number one mantra was, it's impossible to forecast how well a product will do in the market. With a certain amount of accuracy, there's just way too many variables. So we would do have all this like science and approaches and analogues. And we had a product that ended up being like three or $4 billion, that they had forecasted to be 50 million. Because once they got out there, then some doctors started using it for something else. And they realized, Oh, my God, look at this, this actually helps it. So and that spawns something else. And just when you get something in the hands of people, and clinicians using it and recommending it, you may learn something, even just how to use it more effectively, that can then reinforce the whole thing. So it's,
Scott Benner 51:32
I think, also that data coming back to the companies, once they have something on the market helps them understand how it's being used, or where it's falling short. And it allows them to, to put more resources towards bettering it or fixing it or updating it, like you're going on Twitter and being like this don't work that I mean, the company is gonna be like, alright, like, you know, like, what am I gonna do with that? You know, it's,
David Walton 51:53
it's one of the benefits of actually all these products now being connected products with Bluetooth, or what have you, and then sending data up to the cloud. Now the companies are getting to see a more direct line of sight about what's happening with some aspect of the patient and their data that, you know, it may be blinded, but they know that they can see things happening up there, like, wow, look, we pull all this data together, we can see XYZ is occurring. And, you know, there's some really powerful information that the companies now are seeing for their own people. We're trying to get all connected products like trying to link that data. And so we can do comparisons and look at a broader kind of representative look about how people are faring out in the real world. And yeah, that's one of my things is I still I marveled at the fact, like, why we don't have more people using a connected Bluetooth glucose meter. If you're not going to use CGM, there are affordable, BGM products out there that you can you can get a 50 counted test strips for like $9 or $10. And, and test with a Bluetooth glucose meter. And that data, you know, can be then available to a clinician or a family member or what have you just like we have Dexcom and the follow, and, you know, a lot of a lot of these products now. That's something that I think for those who use BGM. But you know, it would be great if we had more of that occurring. Because, you know, it's very hard for a doctor to get insight on things if they don't understand the date, they don't see what's actually going on.
Scott Benner 53:42
Yeah. And I'm assuming too. I mean, I know a little unfairly, I know that far fewer people than you might imagine of the however many people have type one diabetes in America, far fewer of them than you might imagine using insulin pump. And I'm assuming that far fewer of them have CGM than you think to everyone's got a meter. Like everyone just has a meter. And so I guess there'd be I would imagine you'd get data back that in the beginning, you wouldn't even know where the value was until you actually dug into it to to figure it out.
David Walton 54:15
Yeah, yeah. No, I would say our best estimates right now. You know, that CGM usage for people with type one it's over 40% Now really, because last couple years it's really Yeah. You know, having Abbott and Dexcom just working hard upping their game and Medtronic getting improving you know, now that they're better sensors is on the the CUSP here within their system. You know, you're gonna have three good options. You know what, when when that finally gets out? You a lot of work in our quality improvement with all of the diabetes centers, 50 of them around the US right now. We're one of our big thrusts is trying to drive CGM usage, because the evidence is there that people do better when they're on CGM. So. But it's still not in our collaborative, which are a lot of leading larger academic medical centers, it's still it's maybe at 5051 52%, something like that. But we know across all of the US yet, you've got other segments of people where it's much less so I think it's in like the low 40s. So you know, that means exclusively there are 50, some percent are using CGM. And of those, how many are using a connected one versus just a regular one where you have to download it in and someone has to look at it and and gluco or some other download program and then make sense of the pattern? You know, it's it's that things could be done a little bit.
Scott Benner 55:51
But back in the day, I Arden center didn't have the cable for her PDM. So we never downloaded her data ever once. And you know, they were just like, here. Oh, you have that one. We don't have the cable for that. going on for years like that. Yeah. When you're when you're counting on, when you're counting on stuff like that, you're not going to make big leaps. And, you know, I mean, for people who have been around diabetes, you know, less time than you are. Or if you don't recognize that just a decade ago, you'd get a new meter, it wasn't even more accurate. And you're excited. You're like, oh, somebody made a new meter. You know, it things have leapt forward, insanely over the last I mean, decade, right, like,
David Walton 56:32
Oh, absolutely, absolutely. I mean, I, I left animus 10 years ago, you know, but at that point, we, you know, the CGM is we're just getting more accurate like, to where you're getting close to 10, this 10% numbers, there's this accuracy measure that they look at the difference between it and like a lab value blood glucose, and that was like the threshold to look at and, and they were like, 13%, you know, and they started off at 20%, which was bad. So the first versions were bad. That was like 2006. From 2006 2012, they dropped that down from like, the 20% 19 20%, down to like, 13%. And then you got into the, like, 10% 11% 10%. And that now you're down in the 8%, eight to nine. It's plenty accurate. That's very worked with that, that's for sure. Yeah. And you're right, the, the, when I left, you know, the, on the blood glucose meter side, it was like, Oh, we've got a color screen or a backlight, or some new tagging feature, a tag post meal. It wasn't. But But Bluetooth was just getting thought about. I mean, I remember when we were at, we were talking to Dexcom, about their G four, and wasn't going to have Bluetooth or ant was some other radio communication technology that I didn't really understand. And so I remember they made the decision to go to Bluetooth, which was a smart decision. But like 15 years ago, that wasn't, my understanding, was going to be the prevailing standard or not. And then it there was a lot of variability in how people implemented it. And then things got standardized and better in a more stable technology. And it's been the mainstay for the last 10 years. But those five years before it, it was up in the air as to what was going to have
Scott Benner 58:29
tandem held on just for having a color screen. Right, like they were, they were, I mean, I don't know how true this story is. But I've heard that they were getting ready to pack up and just go overseas and sell the the pump. And they just held on and held on a little longer. And people there was a day when, if you talked about a tandem pump, all you would hear was like, Oh, it has like a color touchscreen. And then and that was enough to make people interested in now you say tandem and you hear people go control IQ. So look where we got to, because they were able to hang on a little longer, you know, so, I mean, we need competition, that's for sure. The idea that Medtronic and Abbott and Dexcom make sensors is is good for people living with diabetes. It will keep everybody innovating and moving and that part of it is is that transcends psionics
David Walton 59:19
we should we should point out ever sells right? Much, much, much smaller amount but absolutely competition. And I've said this to people, both companies just Dexcom an Abbott on the TV commercial side, like you know, habit came in and made some waves and then they both had to kind of fight and be competitive to training. You know, many people's they could and it ended up now there's a lot more awareness amongst people and clinicians and what have you because of all the direct to consumer advertising this taking place and just both you know, I having bigger companies competing? Yeah, you know, if one company can just do it all, you know, they're not, they don't have to put in as much effort to go get the people.
Scott Benner 1:00:11
If you were, if you were watching a Padres game, the other night you saw a homerun, go right over a Dexcom sign in the outfield. That's, that's insane. To me. Like, that's a diabetes device. You know, on the wall in the outfield of a Major League Baseball Stadium, like I, that is just not something you would have seen in the past. And, you know, I hear people sometimes, like these companies, they make so much money. I was like, good. I was like, that's how they're going to do this. Companies that don't have money, don't do things like that. They don't they don't invest in
David Walton 1:00:43
innovation, right? You don't invest in innovation unless you're making money on it. So I understand like, look, these things aren't cheap. There's no doubt about it. You know, and then there are things that can be done. And I think, to lower the cost of making them and part of it is, the bigger they get, the lower the individual cost of each item will be because they have these economies of scale that they'll get so you want them to be big to lower the
Scott Benner 1:01:09
cost. Yeah. Because eventually my expectation is my expectation always is that one day Dexcom will call me and be like, Hey, we don't need these ads anymore. And that will mean to me that a greater percentage of people have them and it's become commonplace, like getting a glucose meter would have been 20 years ago, you get diagnosed with it, you said it and you're storing a diagnosis of diabetes and give me insulin and a meter here, boom, and there'll be a day you'll get diagnosed with diabetes, and they'll be like, here's the CGM right away. And then you would hope when the price starts to fall on them, and they don't have to do all the other stuff now.
David Walton 1:01:43
And we see that happening in certain places. I think Stanford starts people on CGM right away, but sometimes depending on their insurance, it can end up that something doesn't get covered. Right away the CGM. So they happen to have a grant that helps cover that until they can get things squared away or what have you. So that's one of the ways that they're able to just make it a rule and say, Oh, you're diagnosed. You're gonna start with CGM. Huh.
Scott Benner 1:02:12
Stanford has GAP Insurance. You're saying for CGM. It's basically
David Walton 1:02:16
like, yes. As I understand it, that that's the whole
Scott Benner 1:02:20
Yeah. That's amazing. Well, is there anything we haven't thought of or talked about that you wanted to?
David Walton 1:02:40
know? I just want to remind people T one D registry.org. Is the T Wendy exchange registry? Location. But I know you have your
Scott Benner 1:02:49
your they can't use that link. Don't use though. Use my link, forward slash given given the link Scott in the link T one D exchange.org. Forward slash juicebox. Right. And that'll get you to where you were talking about, right?
David Walton 1:03:03
Yeah, that way, we can keep track at least where people are coming from to join us. So I should have
Scott Benner 1:03:10
I should have used the I'm joking with you. Anyway, they get there is terrific for me.
David Walton 1:03:14
But that's you know what we've like I said, we hit the 20,000. Mark, we added over 100 people each week, but it gets harder and harder every week. Like because we've hit so many people, we have to keep trying to find new groups of people. So you know, we're constantly trying to think of new ways to find pockets of people who you know, have type one and are not participating yet. And to try to make the case, hey, it's very simple join and then we're doing the work to try to find studies that might be of interest, there might be some new thing that Yeah, you don't care about these other ones. But this one new one that we said that might be something of interest, you'd want to be a part of. We have a woman who works for us who is on who got to us on the pod five, because she was in the clinical study before she joined us really? Yeah. And that's the way she had access to use that technology and to have it covered. You know, as part of that, that's amazing. Yeah. Yeah, sometimes sometimes those things can happen. Other times, it could just be getting your opinion on something. And that's just you know, that's important too. But we encourage everyone to please give us a
Scott Benner 1:04:15
call. I appreciate you coming on and going over all this. I just never feel like that I can accurately. I don't know, like I say I do it in 3060 seconds at a time. And I'm like, I know I'm not telling these people everything that they would like to know about this. So I appreciate you taking the time to go over everything with me.
David Walton 1:04:32
Yeah, well, no, I appreciate you having us on and and, you know, you, you've been a great, you know, kind of advocate for us. So we appreciate you getting the word out to all the people who like to listen to you on all the topics and the speakers that you bring on. So it's my pleasure.
Scott Benner 1:04:49
It really is. I think it's a big deal. I don't know a way to magically get more people to want to be involved in research. So this is my this is my little bit of meat. trying to get people to do it. So it's really a pleasure. Thank you so much. Right?
David Walton 1:05:04
Thank you that
Scott Benner 1:05:13
a huge thank you to one of today's sponsors, GE voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com, forward slash juicebox. you spell that GVOKEGLUC AG o n.com. Forward slash juicebox. I'd also like to thank the Contour Next One blood glucose meter. And to remind you about all the great information that is available at contour next one.com forward slash juicebox. And of course, if you're a US resident who has type one diabetes, or is the caregiver of someone with type one, t one D exchange.org, forward slash juicebox. complete the survey. That's it. Thank you. I'm still getting over COVID. So I have no energy to do all the things I'm supposed to do here. I'm supposed to remind you to go to the private Facebook group and become a member to my I got a little bit of the brain fog. You know what I mean? It's not terrible, but like today, I'm super tired yesterday, I thought, Oh, I'm better. COVID is gone. Here Here. Cheers. Cheers. Take a drink. I can't believe what what to do that my drink is gone. And today, woof feels like somebody pulled the plug, you know what I mean? But it's only day 11. So what do I expect? Anyway, if you're joining the podcast, please share it with a friend. Share it online, tell people about it. Download old episodes, definitely head to the private Facebook group or to juicebox podcast.com to get lists of all the series that are involved. involved. It's not the right word. But again, I'm really tired all the series that are available inside of the podcast like defining diabetes, diabetes, pro tip, diabetes variables, defining thyroid, mental health stuff. I mean, there's just so much I can't even if I had all my faculties right now, I couldn't remember all of them to tell you. Anyway, find them at juicebox podcast.com. In your podcast app or in the featured section of the private Facebook group. I really hope you take the time to fill out the survey at the end exchange or at least that you appreciate how hard it is to to do research and and to move these things forward. After hearing this conversation. I really have to go now completely winded and this might kill me. T one D exchange.org. Forward slash juicebox
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