In this episode I speak to Erik Douds, adventure film-maker and Type-1 diabetic, from Diabadass about his experience building an artificial pancreas
Yasir: So welcome to the second episode of the MicroPharm podcast. In today's episode, we're going to be speaking about building your own artificial pancreas. I'm with Erik, an adventure filmmaker, he's cycled over 10,000 miles. And he is doing all of this with Type-1 Diabetes. He's currently using what many people consider artificial pancreas. And what I want to touch on with Erik, his experience with this and his journey with diabetes. And what a lot of people don't know is, I'm actually type-1 diabetic diabetic myself. So I've had diabetes for 19 years and I currently don't use this configuration that Erik's currently using, I do use an insulin pump. A lot of people think that insulin pump itself provides this complete automation of insulin delivery, and carbohydrate control, which it doesn't, a lot of that data is inputted by myself. So I'm just going to allow Erik to introduce himself and speak about how long he has lived with diabetes.
Erik Douds: Thank you so much for putting on his interview and having me on. And, you know, for a frame of reference, especially if this is going to the medical side, they can appreciate that type one diabetes has actually been in my family since 1943. And so my grandfather had it. And when he was diagnosed, every decade of his life, he was basically told he was going to die. You know, just to give some context to everyone. You know, that was not that long after the invention of insulin, they didn't really understand that carbohydrates impact your blood sugar. And every time I'm guessing he went to an endocrinologist, which could have actually just been a general doctor as well. They basically said, like, you're dying man, like good luck, if you make it to 20. Good luck if you make it to your 30. Good luck if you make it to your 40. And so he lived until he was in his 80s, which is remarkable. And so when I was diagnosed as a teenager, which is now 13 years ago, I was able to instantly have like an optimistic part of my mind saying I can live a long life with this, and I'll have a lot more advantages than my grandfather had. And what resonates with me, what you said is that people believe where insulin pump therapy is currently. I'm always telling people like, go back 10 years in terms of your mind, like I know you think this is like relieving a lot of burden, but it's really manual and it's interesting because even the ADA has a huge science convention each year. And one of the studies I saw was that actually, an increase in technology is actually lead to worse A1C results in America. And so when I, you know, and give some context of how I've managed my diabetes, you know, I've done multiple daily injections I've worn. The older Medtronic pumps, I wear the Omni pod, I've worn Medtronic 670G, which is the first kind of hybrid closed loop. I've seen a lot of what tandem is capable of, that's another American company. And it's now been about two years since I've been on the do it yourself, artificial pancreas kind of known as loop and it truly has been a life changing.
Yasir: That's amazing. And you kind of touched on the next question that I want to ask you. So I want to ask you about how your diabetes management has changed from your first diagnosis? So how did it start with you? How were you delivering your insulin initially? And how did that that change over the years?
Erik Douds:I think for like a frame of reference you see it floating around, but you know, there's over 42 factors that impact blood sugar management, and overall, we as people living with type one diabetes in some way or the other have to try to accommodate all of those. And it's kind of a ridiculous task. You know, if I really look at it, like, a lot of times, I would go into the endocrinologist, right? I was a teenager, and they'd say, what's your schedule, and I'm like, I'm a teenage boy, you know, I'm growing, I'm running around, I eat at 2am I play video games, I wake up for school at six. And I just felt like my doctors were always telling me like, what's your schedule, and then I'm like, I'm a college kid, I don't have a schedule. Going back 10 years, like, when I went off to college, there was no resources about being a college student with Type-1 Diabetes, you know, a blog I was managing at the time was collegediabetes.com, you know, like, two very obvious words together, but no one owned that domain. And I just share that is saying, like, these online resources, which are becoming more and more abundant, like they weren't there. And so, as a patient, I always felt like, I was having some sort of unspoken like dialogue or compromise with my doctor where I'm like, "Hey, here's my life, it's not nine to five, or here's this activity, I want to get into half marathons or marathons or biking. What's your advice?" And a lot of times, they just be like, good luck, you know, with a giant question mark, like, let me know how it is in three months. And it's pretty insane. Because if you think about it, it's like, this disease is changing every 24 hours. And so even if you're seeing an endocrinologist, you know, like, when I'm like, so like, Doctor, like, how are my basal rates doing? How are my carb ratios? And they like, make some adjustments, and then they're like, let me know how it is in a week or two, you know, it's, it's so crazy, because like, this is these changes every 24 hours, if not every hour, if not every five minutes, if not every minute. And so it's like, this huge burden put on patients and like, you don't have a great way of managing yet, even with the technology that is commercially available, you know, and so like, I guess, the short answer is like, I've been on almost everything. It's only until I started looping, that I actually said, here's a system that I can be honest with that will give me the results that I want. Without like, too much compromise.
Yasir: Exactly. So. Now let's dive into loop. So what is the loop device? And how how long have you been a looper? How does it work? And how does it keep you within your range?
Erik Douds: Yeah, so the way I describe loop is that it's an open source piece of software that connects your insulin pump to your smartphone. There's a bit more than that, but that's kind of where I leave it off is that my smartphone starts making automated adjustments for me. How that actually happens is that people in the community, living with Type-1 Diabetes said, Why is my insulin pump not talking to my continuous glucose monitor not talking to something that can run an algorithm. And there's some incredible coders who developed years of their lives, a lot of them are now hired by the industry in a broad sense, because they figured out how the communication protocol worked on an old set of Medtronic pumps. And as of a year ago, also the older Omni pod, which are still available, and said, okay, we now know how this communicates. And so they built a device, which is called a riley link. And I believe Riley is off of someone's child. So you can see that a lot of the motivation here is either a child or someone personally trying to innovate. And then they built the code once they figured out the communication process, say, okay, like, now, your insulin pump talks to Riley link, Riley talks to your smartphone. And then things start to automate, you know, and still requires user input in terms of your meals, your basal rates, your carb ratios, your insulin sensitivities, but where previously, you know,
as a person living with Type-1 Diabetes, maybe we're glancing down at our phone to check a blood sugar and then in our own minds running this calculation, you know, and so that ends up being 20 times a day, like I have now have something that every five minutes is running a calculation and making an adjustment. And so the biggest change overnight is that one, like I actually got solid sleep, I've had almost no nighttime lows. And I can pretty much guarantee that every day I'll wake up in range, because it's slowly making adjustments overnight.
You know, but there are limitations, one of the main ones being insulin is still a terribly slow drug. And so even if you're making automatic adjustments, you still have, you know, a six hour active time period and a 90 minute peak. And so you can't really pull the brakes back. And you can't really throttle it up quickly. But it's a huge step forward. And it's also definitely inspiration for the commercial pump systems. And then a lot of this work has actually turned into a nonprofit called tidepool, which is trying to make an FDA approved version of the app, which now Medtronic tandem, and I believe Omni pod, have all made announcements that they're going to be partnering with tide pool to basically bring this software technology onto their hardware, which is their insulin pumps.
Yasir: That's amazing. So people often use these terms, and they say, Well, I'm open looping along moving towards closed looping. What is the difference between open and closed looping?
Erik Douds: Yeah, so open loop means that the, that the phone or the pump won't make any decisions for you, or just make recommendations. And you can also see this in, you know, the commercially available insulin pumps now, like when I was wearing Medtronic, sometimes they kick you out of closed loop, meaning it's now almost acting as like a traditional insulin pump. But what's nice is that you can look at the app and say, okay, like, the pump, right now thinks I should increase my basal rates, or should give myself a bonus, when you're especially starting off and building trust in the system, you can look at it and say, you know, what, I normally take two units of insulin for what it's recommending. And if you think that lines up, like, then you approve it, and how you approve it, it's with your, you know, scanning your finger or typing in the code on your phone. So if you believe in the security of your phone, you should believe in the security of this, and then sends it over to your insulin pump, where when you're closed looping, every five minutes, it's pulling in that new continuous glucose monitor information from like your dexcom, G6, or the G5, or some of the other systems and then updating that kind of in real time to update the algorithm and then it will make an adjustment, you know, so just to paint a picture, if you just ate and you are rising and said like, okay, like I'm expecting it to look like this bell curve, but then all of a sudden, that next reading, like drops down because all of a sudden you stood up and walked or started jogging, like then the pump might automatically suspend itself for a moment, because like all of a sudden, that that curve shifted dramatically.|
Yasir: Okay. So, in terms of people querying the safety of allowing an algorithm to act upon these changes in your blood glucose levels. What do you say to people that say, is this safe? And the fact that currently, this is something that's not regulated?
Erik Douds: You know, so first I'll say like, I'm speaking from my own experience. My understanding is that loop is also seen as a self experiment. And so one reason it's not regulated under the FDA is because nothing's actually sold. So kind of moving on from that. As a person living with Type-1 Diabetes, I would say, think about the decisions that you make. And do you think those are all safe? So think about the times that you wake up and your blood sugar's 40, or 2.4, for those abroad, and you go, where did I mess up? Or you take that moment and your blood sugar's 400? Or like, 18, and you go, like, Where did I mess up? You know, type-1 diabetes inherently, is very risky. And now, I'm on a system, where it's helping me every five minutes make over 500 decisions for me to ease my burden, and in my mind, keep me safer. And that's what I've experienced. But it doesn't mean that there's not a trade off. And that's why also when you just go on to any insulin pump, you weigh the pros and cons, you know, like, there's a risk of every type of management with Type One Diabetes. And so automation has that, you know, but also has the ability to take better care of ourselves.
Yasir: Thank you very much for your time
Erik Douds: Appreciate it. Thanks for having me on. And yeah, through Diabadass I try to make things as easy as possible just guiding people through the screenshots and also making it so there's a downloadable so you know what pumps to you. So with that I'm always happy to talk about loop and appreciate it.