#924 APS Wookie
David has type 1 diabetes and is using Android APS.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
+ Click for EPISODE TRANSCRIPT
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 00:00 Hello friends and welcome to episode 924 of the Juicebox Podcast. Today, David's on the show he's using Android APS with some refinements. I'm gonna let him tell you all about them. David has a very popular diabetes blog called bionic walkie you can check it out at bionic wookie.com. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you'd like to get 35% off at cosy earth.com, you can do that with the offer code juice box at checkout. If you'd like to get a free year's supply of vitamin D, five free travel packs, with your first order of ag one from athletic greens, you do that at athletic greens.com forward slash juicebox. And if you'd like to save 10% off your first month of therapy, you do that@betterhelp.com forward slash juicebox. David's terrific, you're gonna love him. He's from Australia. Fantastic guy. Wait, do you hear what he's doing with this Do It Yourself algorithm. It's really astonishing. This episode of The Juicebox Podcast is sponsored by touched by type one, a fantastic organization helping people with type one diabetes, check them out on their Facebook page, their Instagram page and at touched by type one.org. I'm going to be speaking at their next big event. I hope to see you there.
David Burren 01:53 I'm David Byrne. I live in Melbourne, Australia. I've had type one diabetes for 40 years now. Wow. I mean, but in my mid 50s. Now I'll be in my mid 50s later this month. That's what my wife tells me
Scott Benner 02:12 sounds like you're 54 Yes.
David Burren 02:19 Let's see. Quite a few Australians know me because I run a website called The Bionic monkey. There's a Star Wars reference in there. Which is all about diabetes technology. I've been living with closed loop systems, self built closed loop systems for about what more than five years now? And I I I've ended up coordinating a lot of the Australian community of do it yourselfers. That's cool.
Scott Benner 02:56 Okay, so you were diagnosed? Geez, when you were like 14? Yes. Okay. 40 years ago was AD AD AD to Jesus. Wow. That's a long time ago. Okay. It's crazy. You. You said you've been doing closed loop. So you've been doing? What have you tried a bunch of different versions? Or which one did you start with? I guess.
David Burren 03:24 Okay. So I started using a pump in 2010. Just to illustrate a little bit about my life, I've done various things during it at my endo had suggested to me a few times that are these insulin pumps, that might be something that you'd be interested in. You're a really technical guy. But I had been very much in the World of Goo. I know how injections work. There's going to be this strange thing of something attached to me. What happens if I fall off a boat or I get wet or something because in those days, pumps weren't waterproof. And then in late, late 2009, I attended a local event where I actually got to see and play with some of the NMS pumps, which were Hey, they were waterproof. And I decided right, this is something I wanted to do. I think that event was in September. Then I organized with my D, my data so they're getting a pump, but then I had to put it off until February. Because over December that year, I was an artist in residence on a ship traveling up and down the Norwegian coast photographing the Northern Lights. Because as well as working in it, I've also spent quite a few years as a professional natural wildlife photographer. Oh, wow. So I've done a few different things but so I started pumping and That went on for probably six years. Before I started using libre, that was the first CGM I got access to. That was 2016. And by early 2017, I'd seen the loop system and I'd seen the open APS system and I decided that open APS was the way I want it to go. So I started, I was carrying a little Android phone. And that was being my CGM and feeding the stuff into my little pocket computer that was running the open APS stuff. I was using an old Medtronic pump. And then in 2018, I got a combo pump, which were being sold in Australia at the time, and that's a pump that has Bluetooth in it. And Android APS could talk directly to it. That's the accucheck. Yes, the accucheck combo, which has last year it was discontinued. That had
Scott Benner 06:01 that had Bluetooth in it and 2018.
David Burren 06:05 That had Bluetooth in it in 2011. When it came out, wow. I have no carry. That's cool. That's a very old and primitive pump. And the interface that talks to it is quite slow. Because basically it's pretending to be a person navigating through the menus. It's not actually sending it direct commands.
Scott Benner 06:21 Oh, no kidding. Do you? Do you see it happen on screen as it's not? The screen
David Burren 06:26 is blank at that point. And it goes faster, faster than I would but it's still slower than if you're actually sending commands directly to its interest, but it works. Yeah. And that works quite well. So I've been using Android by system since 2018.
Scott Benner 06:43 Okay, so you use open APS still today.
David Burren 06:48 I don't use open APs. But Android APS uses the same algorithm. Excuse me,
Scott Benner 06:53 I misspoke. But okay, Android APs.
David Burren 06:57 And I'm not actually using Android APs. At the moment, I'm using something that's very similar to it, which is a version of the software that we've frozen, we use in some clinical trials. Because I've been involved in running a clinical trial over the last few years of Android APs. So this is on people in the real world. But it's a randomized control trial. So it was all at the level that the medicals would actually pay attention to the results rather than people saying, oh, it works for me. I haven't killed myself. Yeah. Right. And so that's through a local hospital. And basically it feels like some of the staff there look at my clinical results of me living my own life doing stuff and they say, oh, that's, that's amazing results. But we need a clinical trial. So I can actually prove this, this works. And in other words, that I'm not just a freak.
Scott Benner 08:01 Right? Well, that it doesn't just work for you and no one else but it is interesting how you are holding up your you are holding up your self as an example. It's like, Hey, look at this. This is what's working for me that like yeah, that's nice. We need to prove it. Yeah. Like I feel like
David Burren 08:16 so the that trials over and I on that one, I was the local technical expert on this hurdle plugs together and oh, when using a different insulin pump for this, so I was the guy who wrote the bluetooth driver to talk to the pump. So I'm fully involved in the technical level as well. Okay.
Scott Benner 08:37 So let me just for people listening, I want to just make sure that they understand. So loop for example, Arden uses a version of loop. Actually, I think Arden's using open APS right now. With the auto Bolus version,
David Burren 08:56 the free APS free, six,
Scott Benner 08:59 free free APS, thank you. Well, I don't this is the part that this is why you don't come to me, David on any of this stuff. Arden's using aren't using free APS, which is a version of loop that does auto bolusing. We are waiting to see the version that works with Dash pods, which I think they have been getting, I think they're getting it close to buttoning it up
David Burren 09:24 the loop world is it seems to be a bit fragmented. So there's various branches and versions that people are experimenting with, which is fair enough. That happens in all systems, but there's loop and then some guys made a branched version that they called Three APS, which was looped with some extra auto Bolus things. And then they made a different version, which is called free APS x with letter X on the end, and some people refer to it as short in shorthand is fx. And that is the open APS algorithm that It's also used by Android APs and open APs. But running on the iPhone. It's basically using all the communication stuff that was set up by Luke to talk to the pumps and the CGM. But they've put a different algorithm in the middle. But there's at least three different systems on on iPhones and to a certain extent, they all look and feel very similar. Yeah. Is there? So it's a bit hard to know what people are using when they say, Oh, I'm using free abs? Which one?
Scott Benner 10:28 Trust me, I don't know that. I know. I think sometimes I just, I, you know, I have people around me that say, Hey, this is the one you should be using right now. Like, okay, fair enough. Do you think there's a lot of outcome difference between loop Android APS, open all that stuff? Do you think people have basically similar experiences,
David Burren 10:47 I do think there's a difference. The openaps algorithm, which is called a ref one, just in case, I mentioned that, again, that has a bunch of things. It has SMBs, super micro boluses. So it's, that's where it calculates, oh, we need this much basil to do this amount of work, because we think we know where the glucose is going. So we need this much insulin. But the basil is going to take a while to get it in there. So the super micro Bolus will take a portion of that and deliver some of it as a small Bolus now, and then in five minutes, it might say, oh, we need some more. Or it might say, Oh, I better not put too much in because we've suddenly changed direction, just as well, I didn't put it all in at once. So that has made it reasonably fast at reacting to thing. It's carbohydrate model. Unlike the commercial loop systems, it's a dynamic one where you tell it how many carbs just like loop, you tell it how many carbs and then it decays those away, it has an idea of how many carbs are on board. And that's partly affected by what your glucose has been doing. So it basically only decays them away when it says oh, it looks like that that was one of the carb effects going on. Because that wasn't the same as what we predicted was going to happen without the carbs. But then it has a mode called UAM, which is unannounced meals. Where it looks at what your glucose is doing and says that looks like food, I'm going to treat it like it was food. I have not counted carbs or declared food to my system for almost two years now.
Scott Benner 12:51 I asked chat GPT to write an ad for touched by type one. And here's what I came up with. This episode is brought to you by touched by type one, a nonprofit organization dedicated to supporting and empowering individuals living with type one diabetes. Living with type one diabetes is a daily challenge. But touched by type one is here to make that journey a little bit easier. With our incredible range of resources, educational programs and community events. They're committed to making a positive impact on the lives of those affected by type one diabetes, from the dancing for diabetes event, to their annual conference, which by the way I'll be speaking at doesn't mention me but I'm not insulted by that. Touched by type one is always striving to make a difference. And the best part touched by type one is offering our listeners an exclusive opportunity to join their community and assess their resources for free. That's actually all true. Touched by type one.org. Just visit their website or find them on Facebook or Instagram. Touched by type one.org. Love this thing. I'm not even gonna have to think anymore. Don't let type one diabetes to find you were touched by type one by your side, you can lead a fulfilling life and take control of your health. So head over to touch by type one.org and get in there learn more about it. I'm adding that part because it's pretty great. They have a wonderful website. They do a lot of amazing things for people with type one. There's a bunch of programs just seriously take a couple of minutes to look into them. And if you're coming out to their event this year, I hope we meet please say hello touched by type one.org.
David Burren 14:34 I have not counted carbs or declared food to my system for almost two years now. I do not carb count. I do not Bolus I just eat and live my life. I don't know anyone who manages to do that on loop unless they're low carb. I would probably eat 200 to 300 grams of carbs most days and sometimes I go way over that. So I would not describe So for the low carbon.
Scott Benner 15:03 So the UAM on announced, what does it stand for?
David Burren 15:06 On announced meals on announced meals.
Scott Benner 15:10 So, and this is the on the Android aps that you're using, that hasn't Yes. Okay. And it sees, so you just eat, and it sees the rise, assumes it's a meal and hits it.
David Burren 15:30 Essentially, it's doing it in that cautious way of we're not going to Bolus everything we, we don't think this is a 100 gram meals. So we're gonna give it however many units of insulin right now, it doesn't piecemeal. But because it can come along every five minutes and dose another little bit more. It reacts fairly well. Now, I knew that the system had this out that the algorithm had this functionality in it back in 2017, when I started and this was one of the things that probably affected my decision as to which system was going to go for it know anyone who went completely Bolus LIS at that point. But it's always doing that in the background and saying, Oh, you missed a snack, I'm going to follow something for it. And back in those days, I was using jemalloc. That was the fastest instrument we had access to here. When I got access to figures, I thought, Oh, this is great, I'm finally going to be able to try and go hands free. And we were going out for Mexican that night. And that was a disaster. So
Scott Benner 16:41 it didn't work out though, you
David Burren 16:42 know, it took a fair bit of fine tuning. First of all, I had to get the dosing adjustments changed for fasp. Because the system was reacting slightly differently. But then I know a lot of people who see what I'm doing, and they come along and say, quite understand, but I want that right. What do I do to plug these things and turn it on? Because I want that? I want that now. And my general feeling is, well it takes a while because you need to know that you've got your underlying settings, right? Because what I started with was, yes, I was counting everything, declaring everything I was counting in declare eating protein as well as protein I can declare as as though they were a smaller amount of carbs in the future. On sort of metrics, what the body does, right, I was I was counting and bolting for food. And then I was getting great timing range, everything was going where I wanted. And then I'd start skipping announcing on some snacks, and how it worked. I stayed in range. And then you do it on a biggest accurate meal. And it all goes out the window and haven't quite got it right. Go back and fine tune. And I went through a phase where I counted and declared the carbs, but I didn't Bolus. Actually step before that. I counted and cleared all the carbs, but I Bolus less than the full amount with the expectation this system was going to take care of the rest. Essentially, in my mind, when you're Bolus for something with these systems, the Bolus is really just giving it a heads up. The algorithm should work out what's going on. And if you've told it, what curves are in there, it's going to do great. It has to guess it all by itself. It might not go quite as well. I actually found if I under counted the curves, the system. It's almost as though the system says You told me it was this much. And it doesn't react fast enough. If I over count the carbs a bit. It says oh, you've told me it's this much. But I haven't seen all of those yet. And eventually, they must have not been there. Because the algorithms always had this thing where it dynamically decays the carbs. So that if you didn't eat the second course or you dropped your ice cream, it didn't actually eat it, then it wouldn't necessarily try and deal with all that food that you might not have actually eaten. It's fairly flexible in that way. But it was a general process of taking away the bolusing but still declaring the caps clearing all the protein and yes, everything was coming in right? Oh no, I have to tune things. My insulin to carb ratio needs a bit of tweaking or my profile needs a bit of tweaking. And then I think it was November was I made some notes in my diary November was the last time I bought last and then in February was the last time that I declared carbs. Because I've gone through Christmas with not bolusing declaring all the food but not bolusing. And this was Christmas, New Year, there was lots of food on the table, and everything sort of went in range. And that gave me the confidence to stay right, let's, let's go completely hands free and see what works. And it did me ask you a little bit
Scott Benner 20:23 about the food you're eating? So, I mean, is this like a very balanced meal of natural foods and etc? Or is this Captain Crunch? At you know what I mean? Like, are we are you not taking in a lot of high fructose corn syrup? Are you avoiding things like that?
David Burren 20:41 I do have celiac disease, but I'm avoiding things with gluten in them, which means that I tend I tend not to eat too much bread. Maybe my diet isn't completely typical. I do. I do find I try to eat sensitively. But I don't all the time, we try to have meat and veggies and a mixture of things. Breakfast is the meal that I probably pay most attention to. Because I always found that I was most sensitive to carbs after fasting. Yes. And that might be because the Gus is all primed and ready to accept these carbs and leap on. There might be one way of looking at them. I have some friends who have children with diabetes and they swear by we give the kids something to line their stomachs that like bacon and eggs or something. And then they can have cereal and it doesn't spike them through the roof. So my breakfast, I have a standard breakfast and basically yogurt and some strawberries and some psyllium husks. So there's fiber in there. It's just a simple, basic breakfast that I don't have to think about, I can just get up and go to the kitchen and have breakfast and get on with my day. I'm on autopilot. And at that point. It's not a huge amount of carbs. And once my body's reacted to that, and I chose that breakfast, when I was still in still counting and bolusing because it was just easy to organize, I didn't have to think about what's my carb count this morning, I could just say, I think it's about 17 grams. Breakfast, it's not a not a high carb breakfast. But after that, whatever food I feel like eating, whether it's at an 80 gram block of chocolate, or an apple or sometimes I'll have a like I said I tend not to eat bread. So sometimes I have things in reps, but the sweet potato wraps because there's no gluten most of my I tried to go low carb in 2017 I thought this this will help me control my my glycemia which was bouncing around all over the place. But in fact, it didn't especially help i Then I was actually thinking at the time, I need to lose weight because I was classified as obese at that point. And I didn't really lose weight. But later on I worked out now it's about actually about the calories when you're trying to lose the weight. Just just ate a reasonable number of carbs. But I've never really excellent when I say never years ago when I started out it was you inject this much and then you eat this much. We ate to the insulin whereas now it's if I ate more, I'm going to inject more or more of the point if I ate more my pump will have delivered more insulin by the end of the day.
Scott Benner 24:01 When you say staying in range, what do you mean by that? What are your goals?
David Burren 24:07 Okay, so I use I'm hesitating a little bit because my brain tends to run in millimoles and I know you're used to milligrams. So in milligrams the range I aim for myself like the green band on my setup is 70 to 140 Okay. And my target is around 90 That's where the system's aiming most of the time.
Scott Benner 24:35 How often do you get under 60 allow that you need to do something about
David Burren 24:45 let's say my neighbor brain is saying what 60
Scott Benner 24:51 I can get up my my chart. I can talk to you like this
David Burren 24:58 three point 3.3 RDL Sorry, I shouldn't wear the what I should do is one of my friends calls me sir graphology let me pull up a spreadsheet my time in range 470 to 140 is generally averages around 85%. And if I just find this stuff in here, we get my time below range, or all sorts of pretty graphs, here we go um below range for 3.3. That would be around half a percent of the day, on average.
Scott Benner 26:16 So you don't, generally speaking, find yourself rescuing your blood sugar with fast acting glucose very often,
David Burren 26:22 every now and then I've had some weird things just in the last couple of days where I will, I'll be low in the middle of the night. And this is hanging out. This is not the way the world works. But it's a timing thing. With the way I've changed a few settings recently, and to do with the high insulin on board that I've had the previous night. I'm tuning that. So I've generally got rescue curves around. And I always have rescue cows with me if I'm off on a big bike ride. Exercise makes things tricky. But I generally don't go through them very often,
Scott Benner 27:00 when you talked about earlier that you had to change your settings to work in this. In this system that you use where you're you're basically you're telling the I guess you're telling the algorithm look I'm eating, but don't give me all this insulin or don't give me any of it, and then it's on you to use it as you see fit. Are you still doing a? What's my question here? Did you change your settings to make them so heavy that they wouldn't work manually? If you went back to just you know what I'm saying?
David Burren 27:32 No, my, the Basal that's programmed in is my default Basal. If my loop turns off, I know that it will keep me fairly flat, okay with as long as I'm not changing things with food, and so on. So know that all those numbers are traditional numbers. But I'm really confident in them and some of the other things that I tweaked, were tuning the insulin modeling. So for example, the duration of the insulin in the system and the way it decays. So that hours after a big meal, the estimate of insulin onboard is actually correct. And I found that made a big difference to how the system was automatically reacting I can make its predictions actually met reality.
Scott Benner 28:24 Was that easier when you move to the ASP
David Burren 28:28 I actually found that is I found it easier to chain and notice the differences when I went to Furter insurance. So I've used an ace Nova rapid and a Piedra and human log and fierce and Liam Jeff, we can't get the longevity in Australia. It's not even it's not approved as a medicine here, but we're allowed to import it for personal use. So I got some from a friend in Europe and have done some experiments and it's quite nice. The faster insulins the decay in insulin happens faster. So it makes a lot of these things more visible.
Scott Benner 29:08 Right. So it's interesting. So that so the algorithm, it's more precise. So yes, yes decision,
David Burren 29:14 I found it easier to make that tuning but at the same time, having tuned the system, I felt like the faster insulin. Let me move into this mode where the system could take care of most things for me. But I have since experimented and gone back to the slower insurance like human logon Nova rapid and life stays the same. Interesting. It's all it's all automatic. It does. I do go high after a meal and it takes longer to come down. And looking back in the old days, I probably would have said oh, I'm too high. I need the Bolus I need to correct and get things down whereas now I have confidence in what the system is doing and then that in a couple of hours, it'll help me down at the right point. I'll be flat in the morning. It'll be fine. Oh, yeah, the fat pasta rangelands. Give me more freedom. But I know the the slower insulins work. There is a complication in trying to compare them though because I compared my timing range for a couple of weeks on one versus a couple of weeks on the other. And they were about the same. I was thinking, hang on, this can't be right that pasture insurance supposed to be better. And then I realized I wasn't eating the same because I had the faster insulin, it's Oh, I just ate that and built it, it'll take care of it. So I will be keeping everything else the same. That's
Scott Benner 30:41 interesting. I tried my hardest to switch Arden over to one and she just had the fiasco she described sometimes as burning. But But the biggest problem is that when our pump site came off, it felt bruised. For for a while after that, the loon jab was significantly worse than the ps4, which is a shame because I also talked to a lot of people who don't have any trouble with it. But
David Burren 31:09 I was aware of these going in because a bunch of people in Europe have been using it for a while and have discovered things about them. So oops, my backgrounds just gone. That's fine. The with CSVs is Nova rapid with the addition of was it's nice in a mode as the main accelerant. And yes, a lot of people report stinging, some people will report occlusions sometimes they say the occlusions in the pump. Some of them reports that their site gets red and inflamed, and they have to change the cannula more often. Some people's report that after some random time, whether it's three months, six months, or whatever, it's like it turns into water and it doesn't work anymore an advocate back to something else. I was aware of all these things before I started. So what I did was I I mixed BS with non accelerated insulin. So if you think about Nova rapid, and VS by the same thing, but BS has some of this accelerant in it, if you mix them together, it's still the same insulin, but there's less tolerance spread around. So no doctor is going to say you can do this, but it's all completely off label. But I used that sort of setup for about three months, and I didn't have any steam. And then eventually, I changed to 100%. And I didn't have any stinging and I haven't had an instinct when it came to being objective. Similarly, Liam, Jeff is the same insulin as human dog. But with the addition of a little vaso dilator trip trip is still I think if I remember that name, right? Anyway. It's also used in some other therapies as a vaso dilator. And the general reports there seem to be it stings like hell, but you get used to it after six months, and your body adjusts and it goes away. So what I did with him, Jeff was I mixed it with Humalog. So I had a lower concentration. And I did that for a few months before I went 100%. And I haven't had any singing. I did notice some stinging early on, but it didn't last long. Sorry. One of the other things relating to that is, little Jeff is available in Youtube 100 as well as new 100. And a lot of people report that the YouTube 100 doesn't sting as much. Interesting. And that makes sense because the accelerant in that is the same concentration for you 100 And you're 200 by volume. So when you administer one unit of the you 200 You're getting half the amount of accelerant than you would with the 100 So it's the same sort of thing of less accelerant. Right.
Scott Benner 34:31 Last thing Arden described the longevity is unbearable. Like she she lived with the fiasco for weeks and weeks and weeks before she finally just said this isn't getting any better. But the the looms if she was like you have to take this off of me I don't think she made it may be more than an hour or so. Which I found
David Burren 34:52 I exception. I don't I don't know if my success with them has been because I took it very slowly. Introduce it slowly or just with a, I was never gonna have a problem anyway. Right? I don't know.
Scott Benner 35:06 So this process you use, do other people use it as well? Or is it just worked for you? Like, like, I mean, I mean you're describing, basically not counting carbs and and not Pre-Bolus thing at all. And you're doing it just with settings. I mean, you know that sounds a little crazy. So I'm trying to decide if your view given to other people or not.
David Burren 35:33 I started doing this because other people were doing it with some of the faster insurance in Europe. And I've, I've been doing it for a while and I've been fairly vocal in our local community about the fact that I'm operating this way, because someone says, I have to carb count for this and the Bolus are a bit mean sometimes I say the Bolus, what's the Bolus? That some people have told me since that they've basically they've been emboldened what I'm doing by what I'm doing. And they occasionally don't Bolus for some foods, and everything works. And some people don't Bolus anymore, but they do announce most of their foods or they announced the big meals. So there's these compromised lines. Because one of the nice things about this is you don't necessarily have to put everything in go completely hands free. You can do any of those stages along the way. And it's been surprising for me how many people just pipe up every now and then and say I Yeah, it's working for me too. And it's not okay.
Scott Benner 36:44 Well, we can I guess you can kind of post date a Bolus in loop. So if Arden's taking in something that I think is like, has a lot of fat in it, or it's been deep fried or something like that. Those sorts of foods, if she makes a Bolus, and Pre-Bolus is her meal, and then tells the loop, I don't know an hour from now expect 20 more, you know, the impact of 20 more carbs, for example, I find that gives the loop the autonomy to push harder when it sees a rise than it would if you didn't put these, you know this empirically in the future. That works really well.
David Burren 37:28 Yeah, I, I used setups like that early on, to try and understand what was going on. And that works quite well. A couple of things to talk about there. So there is a strong sense of yes, this stuff works for me. But maybe it's just that I'm afraid. I don't mind being called the freak as long as it's got us doing it with a smile on your face. I know quite a few other people. I've said it's surprising. This is working for quite a few people. But there's also quite a few people who say, Well, no, it doesn't work for me. I've tried that and it doesn't work. Now, I don't know if their bodies are different. Maybe their bodies are the same and then just not holding the mouse the right way. But I think that's less likely, then we are all different because that's the nature of diabetes. We're all different. I know quite a few people in Europe as saying the totally hands free stuff works. But you have to be using looms, you have to work. And you need all of these settings. And some of them use fairly aggressive setups where they enable some of the automation in Android APs. So for example, when you're going high, it changes the rates and says we need a stronger profile to try and fight it to bring it down. And essentially they start implementing another level of loop algorithm on top of what the system is trying to do. And that sort of works for them. And I tried doing some of those things early on, but I found it often overreacted. And for me, I found it was better to get the base algorithm doing the right thing. Now, there's a bunch of people who've made variants of Android APS, there's a dynamic ISF. Boost Ami. There's a tsunami, there's a bunch of different variants where people have been changing the algorithm to make it more aggressive. So it said, Oh, it looks like we're getting food. We're going to change the rates and dose for for the next half hour or do whatever changes. And if you've been using a lot of insulin lightly, we're going to assume that you're more insulin sensitive and dynamically change things. People have been doing all sorts of experiments. And a lot of people are quite enthusiastic about other systems that they're not mainstream yet they're still experimental versions on the site. I'm probably the unusual thing about me is, I'm managing to do this with the base, the standard stuff that's been around for a while and not using those advanced algorithms. Yeah. I didn't mean, I didn't mention the last clinical trial I was involved in, which is over which was using Android APs. And showing that, yes, it's safe and effective, and we get good clinical results. We're lining up to do the next one. And I mentioned before, the researchers tend to look at what I'm doing and say, we need to work out how to do that. You can guess what the next trials about.
Scott Benner 40:46 They're gonna try to figure out why you're not you're not having to Pre-Bolus your meals.
David Burren 40:50 So we're gonna have a whole bunch of people in two countries who will be doing that, in a randomized control trial. Wow,
Scott Benner 40:57 how long does that take to do that? That study?
David Burren 41:02 It's gonna take about two years to run, I think.
Scott Benner 41:06 How many people will be involved in it?
David Burren 41:08 It's less than 100. And they're not all running at once. That's why it gets spread out a little bit. But people will be involved in the trial for over six months. Ah,
Scott Benner 41:17 wow, that's pretty great. When they get that when these hospitals get this information, what do they do with it? Right, because it's not like, it's not like, Android. APS is a company, you don't go back to them and say, here's what we're learning you there's not a there's not like a dedicated group of a half a million people sitting in a circle waiting for you to come back with it and tell them what to do. Like, what happens when you get the data? Is it just inform more research? Or you know what I mean? What's it? What's the goal of it, I guess?
David Burren 41:50 Well, they call it a hospital. That's the sort of hospital I'm working with is actually not a hospital. It's a Medical Research Institute. Okay, that happened that happens to have patients and run endocrinology practice and do all that stuff. And most of the participants in trials, they do lots of trials, most of the participants in trials come from their client base. I see.
Scott Benner 42:17 Okay, so they have things they're trying to, to move forward as well.
David Burren 42:23 Yeah. And certainly, the results of this stuff gets fed back to the community. Because this stuff is used in multiple, by multiple software systems, it's used on some of the iPhone systems. So the three MPs X, for example, that same algorithm. And there's a general feeling of everyone should be able to benefit from this because the algorithm that's been used is not some secret sauce, not hoping that type zero have made up in the lab and or am I ever made up in a lab and not telling people exactly how it works, because that's their secret sauce, this is all open source, everyone can see what it's happening. So hopefully, new products will come out and be able to take advantage of this because this stuff is really making life easier and better for me and for lots of other people. And it needs to be able to do that for a lot more. Well, everyone deserves one of those systems.
Scott Benner 43:28 Yeah, that's the real goal isn't it is and what I was thinking earlier, while you were talking is even though the even though the retail systems are all really relatively new, in the last couple of years, it's still kind of astonishing that they can mass market, put it on people and get results like that. Because I mean, like what you're talking about is I have a system, but now I significantly understand the implementation of how it works. I significantly understand my settings, like really specific stuff that you put a lot of time and effort attention to, while other people are just like, look at buying this thing. It's on I wanted to go and they're having reasonable like results for the most part. And that's astonishing to me, like, I don't know how you make something that that needs this level of detail. And yet, you know what I mean? Like you don't ask the people what they eat, you don't ask them if they're hydrated. You don't ask them if they exercise if they don't exercise and people are, I don't know, it's amazing, you know.
David Burren 44:32 I do still tell my system when I'm exercising, I tell it to change targets because I'm managing the insulin on board. And I think most of the commercial systems have that whether it's ma PS has, you're going to ease off or a boost. It's basically gotten a braking and accelerator function and control IQ has exercise mode. And
Scott Benner 44:54 what I meant is that you can't you can't know that when you hand something out to the masses. they're not they're not they're not all doing it the way you are, you know what I mean?
David Burren 45:03 And this is the big compromise that we're all dealing with. And this is why the commercial systems like this, it's one of the reasons why the commercial systems don't have all the functionality that, for example, I have access to because they've had to go through the regulators, because the regulators say this needs to be safe or not kill people.
Scott Benner 45:27 And for everybody, not just people who will take a ton of time to understand it. But you know,
David Burren 45:32 that, unfortunately, some of those regular sheet decisions, I think sometimes because they don't, it may be because they don't always include people with diabetes in the decision making process, I think they sometimes end up with less safe things, such as the examples of the Medtronic system. So they had the first commercial, closed loop. And it's basically, oh, we've been working too hard with I've been giving you so much extra insulin, and you're not coming down. So I now need to stop and drop into manual mode and stop helping you because it's obviously not working. That was some bean counter said, Well, the best thing to do. Whereas if I'm sick in bed with the flu, I want the damn thing to keep delivering insulin. And to help me get through this problem.
Scott Benner 46:27 Yeah. Yeah, well, no, it's 100%. I mean, all of them are, I'm assuming, at some point, drawing a line in the sand and saying this is this is, as far as we'll, we'll say, we can help. And you know, if something happens past that, it's got to go back on the user.
David Burren 46:45 Yeah, and I think some of those fall back on the user have been a little bit primitive, in terms of, well, that's the way it used to work when you had a manual system, or we just say, or the user take care of it again. But the user at that point has gotten used to it doing a lot of work for them. So it's suddenly a bigger drop out for them and it becomes less safe. So finding a compromise on all of this is a challenge for everyone
Scott Benner 47:09 Arden's a college now, and just last night, she had a meal a while she was, you know, she's in a room working. And I think I'm watching it, like Get away from her. And I sent her a text, and I don't think she saw the first one. And then she gets this rise that just goes 141 5160 on my garden, you know, but you didn't put in a secondary Bolus if the meal was and now I'm in a bit of a loss. I don't know what she ate, you know. So I'm like, if the meal was heavy in this, or this, you know, you forgot your secondary bowl. She's like, well, it wasn't. So I'm just going to make a correction here. And I'm like, okay, but I didn't see it working. And now she's fighting with it for a few, you know, a few hours in the late evening. And she just, she loses the fight with the Bolus, and she loses the fight with being tired. And she just goes to sleep. And, you know, I tried to wake her up, I, you know, it's a higher blood sugar, not a lower one. So I'm like, alright, well, you know, I sent her a text like, Hey, you got a Bolus, again, I don't hear from her, I finally called and woke her up. And I said, Hey, you know, put put some insulin in here. But at that point, David, I don't know what to tell her. I don't know what she ate, I can see what the the algorithms been trying its hardest over the last couple of hours. It's not working, you know, it's just keeping her level at a higher number. I know she needs more insulin. But I don't know how much and I'm tired. And you and I got to we're gonna do this. I'm gonna be up early in the morning my sunlight or doing something later tonight. Like, I've been sick recently. And like, I got asleep a little bit here. And so we put in enough insulin, we weren't as aggressive with it as I would have been if we were wide awake and looking at the same example. But she woke up this morning at like 110. And, I mean, on any manual system, or if a system would have kicked into manual, she would have been, I mean, I'm assuming she would have been 200 Plus, and it would, and she would not have woken up with any kind of resolution to the blood sugar. This doesn't happen to her all the time. But it's your point about you know, I know this thing's gonna do what it's going to do. And I'm going to end up okay. It's an amazing benefit, you know. So, anyway, what, what else did you want to talk about? What, what? What made you think I want to come on and talk about this on my podcast?
David Burren 49:28 I think it was probably something I posted in the Facebook group that you responded to and thought he sounds like an interesting person to talk to.
Scott Benner 49:38 I definitely do that. But I have to admit, David, 45 minutes into this. I don't especially understand why you don't have to Bolus. I don't I don't know that I Okay. Yeah. I don't know that. I understand why it's working for you or the, you know, like if somebody's listening to this right now. And they're like, Well, I don't want to Bolus for For like, this sounds great. Like, what do I do?
David Burren 50:02 Yeah. I don't have easy answers. But I've got some things that might help understanding a little bit. Because I've talked to a lot of people who say, How can this how can this work? This person personnel at the CGM is always lagging behind. And then when when in when we inject the insulin, it's going to take a while to happen. So when the system sees the arm going up, how can it react in time, it's hard enough for me to Bolus and Pre-Bolus enough for something to act in time. But I think part of it is the way the dosing works. Because it does all these predictions, the RF one algorithm, when using loop, you see the predictions of where we're going to go. And, or I should say the prediction, singular prediction, it's a line that goes off somewhere, and it might go down below zero at some point, then come back up three hours later and go sky high, which doesn't make any sense. Because if the line went that way, you'd be dead by then. The RF one algorithm draws, that's called an announcer ensemble forecast multiple lines. One of them says, This is where we'll go. If you didn't eat any of the food you just told us about. This is where you'll go, if you did eat the food. This is where you go, this is where you'd go. If we turned off the insulin now. It makes a bunch of predictions. And there's another line of this is where we go, we'll go with UAM. So when we think you're going based on what we've noticed about the food, that's where the longer seat, there's these massive lines that go up to the right on the graph. A lot of people look at that in different colors, they look at it and say, Well, how do I know which one is right? Well, the system doesn't know which one is right, because those are all different possibilities. But it plays a safe game, so that any of those are going down into hypo territory, it's gonna make this decision to try and keep you out of there. It makes a guess as to which one of those is more likely ending point. But that guests may change in five minutes time. Every five minutes is growing new predictions, and saying, Alright, looks like we're going over there, it looks like we need this much insulin to try and get us back to target. And then, if we ever calculates the we need, oh, looks like we need three units of insulin. And then it might deliver one of those or one and a half of those. And then five minutes later, because I know, I know, no, no, we need 10 units of insulin, if that would start putting some more in. So it actually does that at a much final level. So if I was looking at my CGM and saying, oh, it's struggling along, it's going up and down, it's going up and down at about level, or is that going up? Oh, the next rating comes in. How's that going? Yeah, I think that's going up a little bit. I'm going to have to Bolus the automated system. By that point, we'll have been doing a bunch of little micro boluses. Along the way, saying looks like we might be going up we'll need a little bit. Looks like we're going up a little bit more, we need a little bit more. The point is those little bits of insulin already in your system and working. So when we're looking at things manually and saying, Alright, I need to dose now. We've introduced a big delay, and the insulin is going to have to play catch up. So I think that regular dosing actually helps the system stay on top because it's taken a few choices kind of face to face along the way and added some insulin into the system. already.
Scott Benner 53:49 It's almost like it works better when it has the insulin working, and it can adjust by taking away instead of
David Burren 53:57 well. We can never take the internet well. No, no, no, not
Scott Benner 54:01 not taking away what's in there. But taking away basil in the future. Do you know what I mean? Like instead of you using a unit of basil over an hour, it's sometimes it feels like if you just gave it the unit, and then let it decide, okay, well, I'm I'm going to I'll turn the basil off. I'll put it back on 2.2. And I'll bring it like you give it a lot of autonomy that way. And I have noticed that it, it works well. When it has the the insulin at its disposal and then kind of works backwards from that. I don't know if that makes sense or not. But
David Burren 54:35 it it sort of does in a nonliving environment. It will start off in the assumption that the basil is just constant. Whereas now now we know we can turn that off. Turn it back on in the future. Though historically endos often talk about your Basal Bolus ratio or 50 50% is a nice balance and Crazy Talk as far as I'm concerned, for a start, if you're eating, if you're having a high carb day, you're gonna have a lot more Bolus, that your Basal is not necessarily going to be more. But then it doesn't really matter if it's a Basal or Bolus, it's just insulin that goes in doesn't matter if it gets given as a bunch of separate bonuses, or as increased by basil. It's just insulin, as long as this system of tracking when it goes in, we're getting the right amount at the right time, that mix of which one it is doesn't really matter. Yeah. Which makes it a little bit hard when you have an endo who says, but the percentage,
Scott Benner 55:38 but I know something about the setup of on the pod five, they want it near 5050. But then the algorithm almost immediately makes decisions after that and moves things around. So I don't think you know, it's something about the way that one set up. It's important, but you know, when you go back and look at the insulin, it's not, not always going to be like that. Yeah, I don't see why that's I don't understand why 5050 is important. That sounds arbitrary.
David Burren 56:08 Yeah, I think it's a historical artifact. When people were dealing with Basal and Bolus injections, that was sort of a guideline as to this sort of works. For most people. That's a good starting point. But I don't think it's the goal that you need to try and get back to right.
Scott Benner 56:24 Now you need Basal you need and you need the bang, you need the Bolus you need. That's it. It's just
David Burren 56:29 well, in today's world with the pumps, adjusting things up and down, you just need the right amount of insulin at the right time. And the basil and Bolus is all the same stuff. Right? You know, whether you take away what we're going to give it by default by basil in the future, which is what you were talking about, and answer the same thing?
Scott Benner 56:50 Well, I think, too, I want to I want to mention that the idea of like, I don't understand, why do why do I notice things working very immediately on a on a looping system. When we know the data is behind from the CGM when the insulin takes time to work. I don't know how to describe why that is. But I do know it's true. Like I do, I do think it's just, I think the algorithm by by guessing at the future or predicting so many different possibilities in the future, I think it's somehow shortening the, the distance between what's actually happening in this moment, and what the data can tell us is happening. Because you can tell me if you've seen this, too, you can look at a blood sugar that's not moving, right? And the algorithm is trying it's given like with with loop, what is it giving you like I think 40% of what it's suggesting. So it suggests a unit, it gives you point four, it waits five minutes, there's still point six less than it hasn't given you, it gives you another like 40% of that it's making those Bolus as long the way you look and go, this is not enough, it's clearly not enough. If you manually in that moment, push up the Basal insulin, or you manually in that moment, give all the suggested insulin, the blood sugar almost turns, I don't want to say immediately. But it's shockingly quick after that, like it really does feel like cause and effect in a way that you don't expect. I've never seen that manually working with an insulin pump. But I have I've seen it so many times and loop that I trust that that's what's about to happen.
David Burren 58:28 And I think that's largely those earlier doses that I was talking about is been giving you partial doses along the way. And those are all adding up.
Scott Benner 58:36 Yep. And you're and you're this close, but it's just not tipping. And then you just push a little harder, and then all of a sudden, I see it. So some
David Burren 58:44 of the some of the things that I was adjusting when I was tuning my system and making it more effective is some of the safety limit. You talked to there about the 40%, right? So in the IRF, one system, there's some controls for what it will do 50% of the calculated insulin, it will do 50% Now and then in five minutes might do another 50% of the new production. But there's also a limit of it's essentially borrowing Basal from the future calculates this is how much basil we need. And then they'll say, All right, I can use the next 90 minutes of that I can bring forward into this initial dose. Yeah. Or maybe the next 45 minutes or maybe the next 120 minutes. So you can make it more aggressive and borrowing stuff in the future. And if you do that too much and your settings aren't right, then it can end up potentially overdosing and you'll go low later, right. Right. So the the safety limits are set relatively low initially because they don't want to overreacting so it was watch the system and see that I can be that I'm going up and I can see what it's dosing. And I don't think it's doing enough, I look at the calculations, there's all these messages coming out in the logs. If you go and look at the right page in the software, it says, we've constrained this because of this. And it's alright, I'll increase the safety limits a bit. So there were some tweaking, they're not just changing my, my ratios, and so on, but also freeing up the system. So it was gonna make the right choices without just opening the floodgates and letting it overdose me too much.
Scott Benner 1:00:31 So let me ask you this. There's a person like yourself, who understands all this and donates the time to it to help themselves out. But generally speaking, how many people do you think are doing this? Even across the globe? Like, how many people with type one do you think are using some sort of a do it yourself algorithm?
David Burren 1:00:53 Can it be that many? 10s of 1000s at least
Scott Benner 1:00:58 okay. I mean, that's, so that's one of those things. We're like, that's a substantial number. Until you look at the whole of everybody who uses insulin to stay alive. And then you're like, well, nobody, nobody does it. Why do you think that is? Because, I mean, Arden has been looping for years now. You know, she took a break and did on the pod five for a while, which worked exactly the way we expected it to. But she really did not want to carry around the receiver that was necessary for so bright before she went back to college. She's like, can I please switch back to to loop? And I was like, Yeah, that's fine. She's like, I just like it on my phone. And it's interesting, because she doesn't really have a lot of the concern about the, you know, the switches in the lever, she was just like, this is fine, or this is fine. And in her mind, it came down to carry a thing. Yeah, I know how well it works, David, like any of them, like but why can't we get people onto them? Like, why? Why is there not like a mass get any mean? Like in your Do you have any idea? Well,
David Burren 1:02:04 I think the commercial loop systems. The good thing about those is they become more accessible to more people easily because the doctors can just basically scribble on the books and say, right, we need to get you this and get you set up, and they've got a better chance than not having access to it at all. One of the things that's changed here in Australia is halfway through this year, we finally got CGM subsidized for everyone was tight one, right. So instead of paying 330 Australian dollars for a month's worth of sensors, we now pay $32. And, strangely enough, that's making it a lot more accessible for the companies to introduce their loop systems, because now Medtronic is saying, Well, if you look, here's what we have to do is that the subsidy is we have to specify which PGM system we're using. So Medtronic is saying, if you walk into the Medtronic CGM, we will give you a Medtronic seven ATG, we will upgrade you. Because they get to sell sensors. And everyone gets the benefit along the way of all, the closed loop system. ipso Med, you're in Australia, I had a little crypto pump. And that's they've now got cam APS, which is another closed loop system that runs against that pump that's now rolling out in Australia. And suddenly a lot more people are saying, Oh, I've got access to this stuff. Great. I think I think the uptake of people who are using closed loop systems, I think it's going up dramatically. And we want to see some more statistics and polls on that to sort of see what's going on. I ran a poll a couple of years ago on the number of leakers in Australia a couple of 100 at the time, but that was all due itself stuff.
Scott Benner 1:04:16 Yeah, I mean, here in America, where things are, I mean, these a lot of these different devices are readily available and, you know, number of people have coverage that would allow them to get them. I just, I don't know, I, I know. It's not how things work. But if this if this was me, the minute This was available, I'd be I'd take the day off and just say to myself, Well, I'm gonna sit down and figure out how to make this happen right now. And I don't I don't know. I don't know why. There are so many more people who will never pump even versus the ones who will and there are, you know, at all and all of this stuff in between.
David Burren 1:04:57 That I think of it as a sense of inertia. Like for me, my my endo suggested quite a few times. This pump might be good for you and I know how this system works. I'm still alive, it's running fine. But in my clinical results when I got access to a seat to a CGM, and I started being able to look at the data myself and see what was going on, it was, Oh, this isn't good enough.
Scott Benner 1:05:24 Right. Nick, well, back then you just alive is your Mendoza line, like, I'm not dead. This is working well.
David Burren 1:05:30 Well, I'm not dead. And I got an HBO one see from my doctor when I saw him. And it was a good one this time. So he said, Come back in 12 months time, and oh, look, it was a bad one. It's come back in three months. And it was, I didn't know what I was doing differently. Because I didn't have the tools to see what was going on. Yeah,
Scott Benner 1:05:49 even that was random. Hmm. So and yeah. So when you found yourself in that situation, if you were being given the golden ticket, if you don't have to come back for a year, it doesn't mean that six weeks from now you're a one see wasn't on its way up? And you had no idea really? Yeah, I
David Burren 1:06:04 had, I had no idea. But I've, I've got my path results back to 2000 or so. And I can see my HBO one. So he bounced around and got up to 8.1. It was down at seven, it got down to a massively low six when I started on the pump, and it was gradually started creeping up again. But after I started looping in 2017, it went down to 5.8. On down to 5.6. It has never been as high as 5.6 cents. Yeah. So it ranges between 5.0 and 5.4. And you're active
Scott Benner 1:06:43 as well. You have you're paying attention, you know, all that stuff. Yeah.
David Burren 1:06:49 I mentioned before my timing range for 70 to 140 is around 85. But my timing range for 70 to 180, which is the more traditional clinical range is about 95%. Right now. And my time below 70 is about 2%.
Scott Benner 1:07:10 You know, it's an I say, I don't see, we don't see it. I mean, lows just are very infrequent,
David Burren 1:07:17 you know, so So I feel very comfortable with where all by senior is I know day to day will go up and down and bounce around. But overall, I'm in a good place. I'm feeling quite good, because I actually had a scare a few years ago with them. That there are sclerosis. So partial blockages around the heart, I didn't have a heart attack or anything but a random stress. Echo said all that said no more than we went down the investigation path. And I thought I was going to have stents and all sorts of stuff. But I managed to get out of it without that. And this was about the time that I was advancing a bunch of my glucose management. And the cardiologist now looks at and says, Oh, you're fine. Great. I've got the general feeling that health wise, I'm in as good a place as I can be, right? A lot of what I'm trying to do is make sure that it's there, but also do what I can to make this stuff available to more people.
Scott Benner 1:08:18 Back then were you feeding insulin? Did you have a lot of like, Were you eating a lot to stop lows and things like that? Or well,
David Burren 1:08:27 they actually the heart issue was about two and a half years ago. But I think I'd already started fixing things. But we hadn't noticed anything. Made an ideal world, you know who maybe it's already healing. Who knows? There's we didn't find it because of how to Tech, we found it because I had a fight because of low blood pressure, which the cardiologist says, Oh, that was probably just that you are exercising more. And so we've reduced the blood pressure meds. And I was on mild dose on that. And now I'm on a half a mile dose, right. So we sort of found it by accident. So maybe it was something that was happening earlier. And it's been getting better through this. But it's certainly notably been getting better, because we've been looking a lot more closely our stuff over the last few years. And everything just keeps staying stable. And that's
Scott Benner 1:09:28 good for you. And that really is wonderful. You don't do you have any of what we consider. I don't know issues from diabetes.
David Burren 1:09:38 We're trying to avoid the complications that weren't I want to
Scott Benner 1:09:41 say complications. But do you have any do you have anything that you talked that you are dealing with?
David Burren 1:09:48 This there's no no. I saw my ophthalmologist a couple of weeks ago and she said Because very nice relinking accent and I'm paraphrasing slightly, but she says there are no diabetes in your eyes. Oh, good. That's what I like to hear. There's no effective diabetes, but it sounds funny the way she says it, bro. And it was going back in 18 months out and I'm in fact thing. Her particularly because of congenital thing, we found one of my optic nerves we found years ago, and we started trading that we wouldn't have found it if I wasn't having my regular diabetes examinations. So I believe in in my eyes is not an issue. But I feel that my eyes are healthier than they would have been without diabetes, because we wouldn't have found this thing.
Scott Benner 1:10:43 Yeah. So maybe saved you from a from a different issue.
David Burren 1:10:47 Yep. So the cardiologist says, the heart stuff is not related to diabetes. It's just stuff that happens when you get older. Although he's only ever known me when I've had normal HPMC, etc, levels. So I don't know if it was something in the past who knows? I've got most of the hand physiologists said, I've got the early signs of something that may turn into contracture of one of the tendons on my hand. But it's something that they can fix. It's not a thing is it's just an early sign that maybe that might develop, but that's about as close to a diabetes issue is I can imagine it sounds.
Scott Benner 1:11:32 It sounds pretty terrific. Honestly.
David Burren 1:11:35 I'm very lucky. Yeah.
Scott Benner 1:11:37 Is it in your family at all? Type one? No, no,
David Burren 1:11:40 no. Well I, I remember, you know, stories about there was an aunt or something or great art, whatever he died or something, but back then. Maybe in the 80s. Going back in time, from what people knew about 10 years ago, if they'd gone back, they might have said she had type two. But if they'd gone back now and done better tests, they might have said, Oh, she actually had type one. Who knows?
Scott Benner 1:12:11 Right? How about other autoimmune stuff?
David Burren 1:12:15 Like celiac disease? Celiac disease is the only thing and that came on after several decades. Okay, so that's the closest thing to a second autoimmune thing that I've got for
Scott Benner 1:12:26 you. How about in your family? Do you see any other thyroid stuff for digestive issues? Anything at all with people? Not? Not yet? It's interesting. Do you have children again?
David Burren 1:12:38 No, no, I have nieces and nephews, I can wind them up and hand them back. I don't have my
Scott Benner 1:12:45 listen. There are days that sounds right to me. Interesting, okay. Has it been? I mean, you said you, you've done wildlife photography and other things like that. I mean, it doesn't sound like diabetes has stopped you from doing things throughout your life.
David Burren 1:13:05 No, not, not really. If I was looking at going on a Australian Antarctic Division runs supply trips every year down to the bases in Antarctica. And they have some humanities births on there, where basically artists can go along and record what's happening, and so on. So there was an opportunity as a photographer to get on to that. So I thought this is exciting. looked into that. And as soon as you've got diabetes, you're not eligible. Because they make you go through all the same medical things, as someone who was going to overwinter and stay there, right. And if you don't have enough insulin, you're gonna die, basically. So I was basically not not eligible. So that was a little bit disappointing. But it guess what I found another way, I've been to Antarctica four times now. Really? I run photography trips down there.
Scott Benner 1:14:01 You make the rules so you, you can allow people diabetes to go.
David Burren 1:14:06 So yeah, I've that also called the travel bug. So I've been to lots of places around the world. Whether it's, you know, jungles in Borneo or up in the Himalayas, with snow leopards in the middle of winter. And most places I go, I need to worry about keeping my insulin. cool enough. There. I need to make sure it wasn't going to freeze overnight. Yeah. So yeah, I feel that I live my life and diabetes has to come along for the ride. That's one of the other things that you were asking before, what we what we should talk about. One of the other things that a lot of people might find interesting is Something that I'm not responsible for, but a lot of people seem to associate my name with. And it's the NuBus G six transmitters. So the X column G six transmitters, they run for 100 days. And then they turn off mailing lists. And in the early days, people were able to cut them open and replace the batteries and seal them up again, and then they'd go for another 100 days. But Dexcom, change things so that you can't do that. So, I know some I know some people who've did some engineering, and they basically they modify G six transmitters now. And we went through a phase where we're trying to work out how to get this working, I managed to get a bunch of people in the US, including some of the people from the Facebook group, I donated all transmitters, and we sent them over here and then basically pulling them apart and using them as test beds and how to make things work. So what they have now is a system where an old Dexcom J six gets recycle, and it becomes an A novice GC. And the NuBus comes with a battery that sealed in the bottom with clear silicone. But when it's time to replace the battery, you can actually see that's where I dig in and dig out the battery and I stick this other new battery and never seal it up again. And it automatically resets. These are really convenient because they have a bunch of other advantages. The transmitter doesn't timeout after 100 days, pumps out after 190 days because they have a bigger than normal battery. And it doesn't stop your sensor after 10 days, it stops your sensor after 60 days. So I can run my sensors for 20 days and not have to do any restarts along the way. That's really convenient.
Scott Benner 1:17:05 And you do you notice that it holds up as far as accuracy goes,
David Burren 1:17:10 Oh, it's the J six. They didn't change any of that stuff. Yeah,
Scott Benner 1:17:13 right. I just been having the wiring for that long. Oh,
David Burren 1:17:17 with J five, my record was 53 days. What I'm doing now is I used to run sensors for as long as I could, because we had to pay for them all ourselves, and it cost a lot of money. So you'd be saying alright, is it unstable yet? Is it time to change it? Now I can go another day, and then suddenly it goes out the window. And right now I've got this outage I need to start up. So I set up something where I could, if I've got two transmitters, I put in a new sensor with new transmitter and I've essentially got another program talking to it and I start the session on that transmitter. And then when it's when it's warmed up and it's ready. Hopefully before the old one has completely died. I tell my loop system use that transmitter instead of that transmitter. And it gets gets good data to I don't have to warm up as long as I've done everything right because it's already warmed up and had the first day of weirdness out of the way before I switch over. So now that we've got things subsidized, and they subsidize them for essentially one every 10 days, I'm actually putting a new one in every 12 days. And then I'll I'll switch over to the new one. After another day or so, once I know it's stable, and it's really nice being able to see two lines and say no that had old sensors going weird or the new sensors going to it. Suddenly, it's not just finger pricks and CGM. We've got fingerprints and two CGM so that we can compare. And it means that my the amount of time my system is actually making decisions and looping is pretty much 100% all the time, because the CGM never actually has to disconnect and warm up, right?
Scott Benner 1:19:07 Do you think that G seven will cause problems for the DIY community? Or do you think people will
David Burren 1:19:12 you know, not especially the g7 is essentially doing some of the same stuff because each, each sensor has its own transmitter. That's where That's where this new stuff comes on. Where after 10 days, it's not the new one. But I'll keep using the old one for 12 hours. Yeah, so it's essentially doing the same thing. And but it automatically switches over. Now it it'll be harder for people to try and extend the system in the way that we've managed to do with the newer stuff. Now the reason people associate me with somebody whenever stuff is on my blog, I posted an article saying these amazing thing and works really well because I've been testing it for them. And I get people sending me messages saying Hang on, can you sell me one? It's not mine. I'm not involved.
Scott Benner 1:20:06 I'm just using it,
David Burren 1:20:08 talked about it. But the guys who distribute those, by the way, that they're not selling them for profit, they're pretty much essentially giving the way they get donated trans old transmitters that are getting recycled. And they're just set up little machine shops that have laser engravers and everything out. And it's all automated home workshops, stuff from people who have diabetes, hell bent.
Scott Benner 1:20:35 That can't afford to do it.
David Burren 1:20:37 It's hard, hard to imagine how any of that could be applied to a G six, where everything's integrated, and then applied, and then you take it off, and then it's done. G seven, obviously. Yeah, sorry. So I am thankful that we have subsidies here. So if I have to use them one every 10 days, I'll be able to afford them.
Scott Benner 1:21:01 No, it's amazing. I've talked to people just you know, in the last two years in Australia, who are like, I can't afford anything to those same people sending me notes and say, hey, look, I have a CGM. Now or I have a pump now. It's like, it's amazing how quickly things are kind of moving there.
David Burren 1:21:16 Yeah, exactly. So I think I expect people will be able to use G seven in the with the open source software that Do It Yourself stuff. I believe that's already happening in your head to talk to them.
Scott Benner 1:21:34 Yeah, well, I mean, it's been out for just a handful of weeks now, right? In Europe. And I mean, my expectation is, it's going to be the next couple of months, it'll be in the US. So you're gonna start seeing it everywhere pretty soon saw as the FDA, I don't know what the hell they're, they're holed up. It's but as soon as that goes away, I guess we're gonna see it here.
David Burren 1:21:57 Now in Australia, because most people are getting it through subsidy. I think introducing it here. It's not as though it'll get introduced and sold will cash sales. And then eventually added to the subsidy, I think they'll be lining everything up so that when it comes here, it'll be with the subsidy. So I don't know how long that's going to take. Yeah. But we've only had G six here for about two years. I think you've had to do six for longer over there. Yeah.
Scott Benner 1:22:28 I know. I hear Canadians often talk about the feels like a chasm of time between when new stuff comes out. And they actually got it. I guess it's similar. I don't know. I wish I understood more why that happens. But I just don't. You would think that people would diabetes everywhere, right? And there's governments you can charge for this stuff. Like, let's get going.
David Burren 1:22:52 Yeah. Life is life is multifactorial. So there's a limited market in Australia, compared to the US. So all their costs for going through and setting up things with the regulators and importing and doing all those things. There's more overhead. So are they going to make enough sales for it to happen? Now that things are subsidized, if they can get onto the subsidized list, it's easier for them to say, alright, we're going to have a steady supply. Right. So hopefully, that will enable things to move quicker. But But yeah, dealing with different regulators in different places. does add a lot of time. Yeah,
Scott Benner 1:23:32 it really does. And in the meantime, there's people who mean, you would think that if you were the government, why would you not say, All right, well, maybe we were not the maybe we don't have as many people here with type one. But let's make it attractive for these companies to come in and service, at least the people that we do have. That part is a little interesting, you know, like,
David Burren 1:23:53 the other thing is only on Jeff, and Jeff has been available overseas for ages. And, and we're over here saying it's really great with important time it used it and it's great. Why can't we actually get it properly. And we're saying the same thing. We had years before fierce was approved here and then still years before it actually became available. But when it becomes available here, again, the drugs subsidized through the pharmacy benefit scheme for PBS. But the price that the manufacturer gets is controlled by the government. Basically, the Australian Government doesn't pay a lot for the drugs. Right. So that will play into are we going to make enough sales at that price to make it worthwhile to bring it in? Yeah. Novo got to CBRE approved in Australia a few years back. They don't actually import it, sell it because they're not going to move enough of it. They sell that I rise adag that mixed one. But not not peintre saber, just as an example, someone said, No, it's not going to be worthwhile. And there's all sorts of weird things. Because there's the way the drug subsidy stuff was set up. There's, you can't introduce a newer, or a different form of the same drug. You can't have too many forms of there's all sorts of controls without having to get a basically get less money for the drugs. And it's all this competitive stuff built in. But that actually meant a few years ago that when FISP was introduced here, it was available in out because VSP is actually insolent as part. So it's not actually a separate drug. It's the same as Novo rapid, which was already in the list, which was available in prefilled, pens, in pen cartridges and in vials, okay. And then faster is faster acting insulin ESPAR is available in pens, and vials. But they didn't introduce pen cartridges, because that would be too many. And then they wouldn't get as much money from the government for the drug. But it's complicated, it's
Scott Benner 1:26:23 dizzying. Yeah, it really is, um, just, you know, people need stuff, it'd be nice to find a way to get it to them in a way that is affordable, and unreasonable and easy. You know, it's tough to RDS have to have diabetes. You know, you start jumping through hoops to get things accomplished. And you can see easily why it doesn't have I mean, to take it out of diabetes for a second, my mom just moved with my brother. And she had to live with him for a little while, while she established residency in a new in a new state before she could go to this place that she wanted to go to and get the assistance she needed. And she, you know, she wanted and everything. And the amount of phone calls and paperwork. If my brother and his wife were not doing this work for him, my 80 year old mother could not accomplish any of this, like there is a system set up for people that they functionally can't take part in. And you have to have somebody helping you what if you don't? What if you don't have someone helping you? Like, then what happens? You don't I mean, like, it's, it's fascinating.
David Burren 1:27:30 That actually opens up another concern with the fancy technology we use these days. What happens when we get older? Yeah, I think and we go, and we're going to aged care. That's, I mean, we have quite a few loopers in Australia who are in their 70s. And I think some are in their 80s. Now, and it's something that people talk about what's going to happen later on at some point in my life, and I guess it could happen to all of us what happens if I'm involved in accident, I have a friend from university who has an acquired brain injury, and later develops diabetes, and isn't able to deal with any of this stuff. Everything has to be through a carer and what's going to happen when the family carer gets old. So that feeds back into winning to make this technology as accessible to people as possible, so that not just Can people without the background and experience that say I have been using, but also that someone looking after them who isn't especially skilled and more comfortable.
Scott Benner 1:28:41 No. And I think about that. I mean, you have diabetes, I'm sure you think about it for yourself, but as somebody who's looking at a child with it, I think about that constantly, because my daughter is going to be older, and in need of help at a time where I won't exist anymore. That's hard to deal with, you know, like, is she going to meet a person who will help her or, you know, will she have enough money to be in a healthcare system that can help her also, I've seen my mom in that health care system. And due respect, they're not great with giving you a pill when they're supposed to sometimes, or you know, managing things that are not nearly as complicated as diabetes. So I don't know. It's, well frightening idea.
David Burren 1:29:23 It still comes up every now and then but we still we are hopefully moving away from the world where someone would go into hospital for and they have diabetes for them unrelated thing and the doctors would take and the nurses would take their insulin away and then it's our youth you need to have your evening insulin there. But you haven't given me a food yet. The food's not here. No, no, we need to chat this now. Or you have your food now. We'll come around later with the insulin. All of this stuff is totally in integrated into into our lives that, like I have a colonoscopy coming up in a little while, and I'm thinking ahead to when it comes to what day is it on? When am I going to be starting my CGM sensor? Where is my prompt site going to be because I'm going to be lying on the bed this way. And they're going to need to put a cuff there and put a line in here. And it's no good if I have technology in the way. So all this stuff is tightly integrated into how we live our lives. Yeah. And,
Scott Benner 1:30:34 anyway, alright, you're bumming me out there.
David Burren 1:30:38 It's okay, I'm actually participating in a summit in a couple of weeks. One of the big research bodies here is having a series of panel discussions and one of the things we're talking about is how this stuff integrates. And the reason that's in my mind is that kind of some of the things we talked about before, some of the design design decisions behind this technology are often made by people who don't actually live with and don't actually realize that, oh, it affects this, or that means you're going to put this site there. For me and Omnipod, I use Omnipod dash every now and then. Not regularly, but I've got a couple of boxes. And if I'm going for watersports or something I might change to a a pod on a waterproof looping phone for that weekend. But I need to be very careful about where I put the pod. Because it's very particular about the radio reception. If someone's dealing with the PDM, which is the insolent way of doing things, you pick up your PDM. And you also you change a Basal or something and then you put the PDM away. Whereas me I've got the looping phone that's talking to it, and it needs to talk to it every five minutes. And if the part is on my right hand side, and the phone is on my left hand side, and I'm a big bag of water right in the middle blocking radio signals. Things don't always work neatly and people finding that with the Omnipod five that you need to make. It's better if the CGM has good line of sight line of sight to the to the pod, it's the same sort of thing, I have to think about where my phone is where the CGM is and where the pump is. So, flexibility for me the when I'm using a tube pump, I can have my pump in pretty much the same spot every time and the tubing just goes to wherever the site is. So in some ways, a tube to pump is better for me than a pod.
Scott Benner 1:32:50 Because you have that that option. Yeah. So you'll always know where the pump is going to be. And that you just move the site.
David Burren 1:32:57 Yeah, I mean, there have been times when it's old enough for these couple of weeks, it's on my right side. So I need to make sure I put the looping phone in the pocket on my right or a pocket on my left. Whereas these days, it's just no baby every time my pump lives in little running belt has to be built. Yep, that's underneath my clothes around my waist. It's always in the same spot. And then the tubing runs along the belt and then up or down to wherever the site is,
Scott Benner 1:33:22 you know, if you tried to make this argument, the art and she'd be like, I don't know what you're talking about, but I'm not attaching anything to me. So I can't get up. It's just so interesting. What where you're everybody's perspective comes from their entry point. Really, you know, yeah, different perspective.
David Burren 1:33:40 This thing of tubes versus unsheathed I started off with an NMS pump. And I had a a talisman around my neck and an SOS, whatever tells me medical thing. So if I was going, it was in the middle of the night, I was going to the toilet or something and I had to do my pump somewhere. I would probably clip it the bed around my neck. And then the tubing runs down to where the site is. But I always had this extra thing I was carrying around and having to put somewhere or back into a pocket or something. Yeah. But yes, there was something attached to me. But when I started using the looping systems, I no longer had to touch the pump. The pump would hide away in a pocket. And my relationship with it changed. Yeah, because now now the pump is in that little running belt around my waist and including when I go to bed. So if I wake up in the middle of the night and I have to go to the bathroom, I just get up and I walk down to the bathroom. The pump comes with me I don't have to. There's no feeling of oh, I've got something's actually the tubing somewhere is comfortable with me. Yeah.
Scott Benner 1:34:50 I know some people who put it like on their bedside table or lives in the they leave it loose in the bed with them. I've heard people describe what you just described. It's interesting how it all works differently for
David Burren 1:35:01 it, find a system that works for you. And I've used different systems along the way. And that and they've all, whatever I've been using at the time has mostly worked for me at the time. But you know, when the pugs were introduced here, a year and a half or so ago there were some people other companies find people with diabetes, who are they become advocates, basically? Yes, it's wonderful system, it's changed my life, which is great, and it's fine. But many times. Some of those people, the first pump, a lot of things they described about, oh, I can change this I can change that is, you can do that on any pump. And they say, but there are no tubes, I don't have something dangling attached to me. And I say, I don't have some, I don't feel like I have anything dangling attached to me anymore. So in fact, when I use a pod, I'm restricted in terms of I need to fill it with the right amount of insulin, because there's this decision, when I get to the end, have I put enough in it to last the 70 to 80 hours, if I've put more in it? Am I going to pull some of that out and put it into something else? Because my insulin doesn't cost as much here, you can sort of say, well, I'll just using using new pod and fill it with new insulin. When I was using these new images that I imported, myself, I was a little bit more sensitive, because every drop was was money. The and there are issues, if I have a problem with my site, then I have to put a new part on. Tonight, I put a new cannula in for my pump, and I put it in and it was out that's not working, I can feel that that's completely uncomfortable. I took it off and the drop of blood comes out. And it's no, that's a bad site, I'll just put it in somewhere else. And suddenly I've wasted 50 cents, or $1 or something on an annual that's I haven't wasted a whole pod and then have to ring up and say you know all this hassle about
Scott Benner 1:37:15 So David, here's the other the other side of it. In your in America, you get your your doctor to write you for more pods than you need. And then you draw out the insulin if it's new, and pop it in the other one and keep moving. Like it's all the same. But yeah,
David Burren 1:37:29 I know. But. And there are there are ways around this we live, we each live within the constraints of existence that we're using. Yeah. But each time we use a pod, and I get to the end of it. And it's right, I'm going back to my other hub that feels like Old Faithful, comfortable territory going back to my tube pod so that that the pod to me at the moment feels more restrictive. It's less restrictive, I can go swimming, I can everything keep running. But in terms of general where it doesn't feel the same, because I'm not used to it.
Scott Benner 1:38:01 Well, you've just described exactly why all these device manufacturers are so focused on getting people when they're newly diagnosed as customers, because then this becomes your norm. And you know, it's hard to imagine otherwise, you know, it doesn't make doesn't make the other option. untenable. It just makes it different than what you're accustomed to. So and you are right, like no matter what scenario you get put in, you do find a way to make it work as seamlessly as possible with your life doesn't matter if it's a pumper. A CGM or whatever it is you you fit it in and you make it work. And then suddenly it feels like this is the option, the only option? Makes sense.
David Burren 1:38:43 Yeah. And different systems have different advantages. And I think a lot of people as you say they get locked into the system that they're using. And they don't necessarily realize that the grass might be greener on the other side of of that fence, or maybe on the other side of the highway, maybe just in the next paddock, whatever. So when I started on an LMS pump, I was using the infusion sets that my my diabetes educator had suggested. And I was using them for years. Those were the ones that I used, oh, if there's a supply issue, and I can't get those, what am I going to do? I'll manage to get some or I've got an A got out of it. It's okay. And some of our friends who are interstate they were using some different ones and they were having supply issues and all sorts of dramas. And I realized that well, maybe I should try one of these other ones. Maybe if I wasn't tied to this one, I'd have some flexibility if there was a shortage Yeah. Now, it's convenient here that all of our infusion sets are subsidized to the same level once you've registered as a pump Use a you can get any of those at subsidized price I say so so I can, in fact switch to a different pump type. If I have the pump, I can buy the other supplies. I don't need a prescription for each one. But that meant that oh, let's try the stoop cannula. Let's try the ankle cannula. I'll get a box of those and see how they go. So I've now used pretty much everything. And I found the ones that I like. And I've got to the stage that I get all secondhand pumps of different types, I've now used pretty much every type of pump on the market. Yeah, and most CGM. So my decisions about which ones I'm going to keep using is I've used some of the others, they don't necessarily feel right. But sometimes there's something that oh, that's nicer, because, for example, I started using the were they the comfort sites, which tenem now call them the very soft Medtronic call them the silhouette, the angled one. And they turned out to be about great. They were nice and comfortable. Manual insertion, which was quite daunting. But once you got that over and done with it was fine. And it actually turned out that I can pack a lot more of them in a camera bag when I'm going to Africa. All sorts of other advantages. It's so interesting
Scott Benner 1:41:28 to hear people talk about these little things. I remember when Arden was really young, and we were looking for pumps. And we were drawn to the idea of the Omni pod, a nurse practitioner who tried everything they could to scare us away from like, don't use that. They everything they could think of like your daughter is too lean, it won't work. You're not gonna like the angle that the cannula goes in on if you don't like the angle, the cannula goes in on you can't go to a different set. And I just was like, wow, like I look back on that now. And I realized she was just coming from the perspective that she had, which was, you know, this this back then this insulin pump was brand new. She didn't have any experience with it. These were her experiences before, she didn't really know if what she was saying was going to apply to us. She was just like, here's all the things you should be scared about. And you know, I'm like, Okay, thanks. We tried it anyway. And, and then those things didn't end up being an issue. And so long story, but in 20 seconds, like two years after Arden started an insulin pump, our our practice, apologized to us. They came to us and said, We're sorry for how we tried to scare you away from using this pump. Like your daughter is having so much success with it. We're gonna start talking to other kids her age about it. And I thought like that's just always stuck with me. Like they were so adamant. They had rules and lists and reasons. They were like, This is why you can't buy this, this thing and then later, they're like, Yeah, we were wrong about that. Sorry. Jesus. Okay, what else you're wrong about, you know, is how it made me feel?
David Burren 1:43:04 Well, yeah. I, in my own head, I have lots of experience with I've used lots of different equipment, different CGM, different glucose meters, pumps and stuff. I'm not necessarily an expert in all of them. But I've noticed some of the differences. And I sometimes point those out to people because they haven't necessarily noticed those. They don't know those things going in. So try to give people as much information as possible. But yeah, I guess, the track the track there. I shouldn't necessarily be trying, I shouldn't be trying to frighten someone away from using something because I find something in issue. I can point out to them that this thing exists, then it might be an issue for them that personify that. That middle ground of trying to scare someone or trying to inform someone is always tricky.
Scott Benner 1:44:01 It's our communication had that person done what you just explained, it would have been completely different. You know, we just said, look, here's some things that could possibly happen. Here's why this may or may not be important to you. This pump over here won't do that. This one will like I would have been like, Okay, that would have been information to take in. But instead it felt like I don't know, it felt like a scared person or an anti sales pitch. Like you started looking around, like, do they work for somebody like they were so just, you know, pushy. But I don't think looking back that's not wasn't their intention. I just think they had a certain set of pride. I was gonna say priorities, but I think it's perspective. I think they've they had experiences and perspective and they were unknowingly defending that perspective against what they saw as being different. It's just, it's fascinating in my heart, I think people should use what works best for them. Like I you know, I mean, I take ads on the podcast, but, I mean, I have to be honest, like, I don't care if you buy an AMI pot or not, like I want you to have an insulin pump that works for You? And if I'm the pods the one great. I don't mean like, I'm not. I don't know, like, sometimes I think that can get blended a little bit like, well, he has ads for Dexcom. But you get a libre. I mean, what do I get?
David Burren 1:45:11 Well, presumably, presumably, you might not be so comfortable running ads for a company if you had concerns about the product?
Scott Benner 1:45:20 Of course, no, there have been plenty that I've turned down over the years. And there are some that have been easier to take, because I have that personal experience with them like I can, you know, like when Dexcom comes to me and says, Hey, can we buy an ad on your podcast? I immediately think, what are the reasons why? When anyone comes to me and asks for an ad, I, my first thought is, I want to know all the reasons why I shouldn't do this, because if they're too great, or it's bad for the people listening, I won't do that. They may, then that may sound like that may sound like I'm protecting you all which I am to some degree, but I'm also protecting myself. Because if I say, hey, use this pen, and you all run out and buy this pen and it sucks. Well, then you're gonna stop listening to the podcast and be like, Oh, the guy was wrong about the pen. I wonder what else he's wrong about, like, you know, I mean, like, there's a, there's a bit of self preservation in there as well for me, and I have comfort with the things that I advertise for. I mean, like, Chivo Capo pens, a great example, that thing came out. And I was like, well, that's brilliant. Like, like, Yes, finally a form factor. I can put my daughter's hand, her friends can understand it and etc. You ever tried to explain the lily red kit to a nine year old? You know,
David Burren 1:46:38 yeah, we, the only glucagon we have here is the NoVo hypo kit, which is essentially the same thing as the red Lily kit.
Scott Benner 1:46:47 They're gonna keep me because Lily stopping
David Burren 1:46:50 that? Well, that's no most product at glucagon product at the moment. Yeah. So it's no signs that they're stopping. We don't have access to vaccine, me or GMO? Or any of those?
Scott Benner 1:47:01 Yeah, no. And, guys, I'm sorry.
David Burren 1:47:04 I was reminded from what you're saying some of the stuff that comes up on my blog. And what we're saying about advising other people, is always when I started writing things, and putting it down on the blog, I was always conscious that this stuff is going to be up there. Anyone can read it. Yeah, and I don't want to be saying the wrong thing. But there's also this big thing with the, the open source, the do it yourself, equipment of this is not medically approved. If I tell someone, I can't tell someone, you should, you should build this system and it will work for you. I can't do that, legally, I will get myself in a lot of trouble. But luckily what I can do and stay on the right side of the law is say, this is what I'm doing. And it's working for me. These are the things that I've noticed about it example, I always try to keep that in mind. And try to not cross the line of giving something that could be misconstrued as medical advice. Always have it in the context of my experience. I write about a lot of technology. But it's mostly in terms of I have actually used this. This is my opinion of it. These are the things that I've noticed. Right. And I think that's been working very well. It's quite pleasing when I'm at a diabetes conference. As one of the community advocates there, and I get stopped in the hallway by endocrinologist to say thank you for the blog, I was able to direct some of my patients to it. Yeah. Oh, that's great.
Scott Benner 1:48:39 I completely understand what you're talking about. And I'm never not knocked over when somebody comes into the Facebook group. And they answer this quick questions about, you know, what's your attachment to diabetes? Bah, bah, how did you hear about this? When people say, Oh, my doctor sent me hear, I'm always like, Wow, that's great. Like, just terrific. And, and I take all your points to like, you're just I'm just sharing what's worked for, for my daughter, basically, and things that I've noticed along the way. And, but the, the feeling of I mean, I guess the way I handled it is I might do a good job of sometimes sounding like, I'm like, Oh, I just thought of this, which has happened a time or two where something's clicked popped into my head as we're talking. But for the most part, I don't say stuff on here, until I've seen it work over and over and over again for my daughter. That would be irresponsible. I don't understand. I couldn't do that either. So it's a it's a great thing. It really
David Burren 1:49:35 it. It does feel sometimes when I'm moderating some of the Facebook groups. And it does feel sometimes that I'm being very wishy washy with my answer saying, Well, you could do this, but you should see your doctor.
Scott Benner 1:49:53 Yeah, I tried to just say if this was me, or the way I see this, it could be wrong for you. I'm only looking at one graph, there's no way for me to relate. No, you don't. I mean, like that kind of stuff. But you should be going in this direction.
David Burren 1:50:07 I guess I just realized, I guess I had a lot of experience in that before the diabetes advocacy because I've been involved in amateur photography stuff for a long time, the Australian photographic society and various photo competitions and getting critique on photos. And you learn very early on to give constructive critique, not criticism, per se. And you can always find something constructive to say about pictures, when I'm giving feedback on photos, and it's something that I still do to some of the camera clubs. I'm very careful to try and give suggestions and things that they may not have thought about. Without saying this is good. This is bad. Yeah. Because yeah, I'm setting myself up for being attacked. At that point,
Scott Benner 1:51:00 I tend to lean into the, what is the call? Is it the Socrates questioning method? Or, like the idea of teaching by asking questions, you know, like, oftentimes, it's almost it's a version of you can, you know, teach a man to fish kind of a thing. And
David Burren 1:51:18 I have gotten into trouble with that with my family. At times when they say, don't ask me another question. Just answer the question.
Scott Benner 1:51:24 Well, online, I find, it's great to say, hey, well, do you think this or this just happened? And then you kind of let that they almost sometimes people know, they just don't know how to put the pieces together. And you know, I find that pretty, a pretty valuable way to talk to everybody. But, David, I have to jump off in a minute. But this was terrific. I just want to make sure that we covered everything that you don't have anything left hanging that you that you didn't get out.
David Burren 1:51:50 I don't think so at this point. I think I've covered a broad selection. There'll be something new and different. That's happening next month, or whatever. But that's next month, I guess this will this will take a while for this to come out anyway, it'll still hopefully be fairly up to date when it does.
Scott Benner 1:52:06 Yeah, well, because we're talking about things that are more time sensitive with technology, I will slide up on the schedule. So it doesn't, doesn't sound like it came out of left field. But the other things things change quickly, right. Like Arden is off at school right now using arrows pods and, and the version of the loop that she's using now. And she might come home and over, like the holiday break, and we might switch her to be you know, something different and send her back with something different, I have no idea.
David Burren 1:52:37 We'll just reminded me about something that went through my head earlier, when she was saying, I don't want to carry this PDM I want the system running off my phone. But she's still happy to carry around an orange link or rolling link or whatever.
Scott Benner 1:52:53 So that is the gateway what she's not happy about it. It was a trust me, she hates that. But But I got her to be okay with that by telling her that eventually there'll be a system that doesn't require that. And it's smaller. And she has it she keeps it in her diabetes bag. And the orange link seems to have a much better a field of coverage than the Riley LinkedIn. So she's the Riley Link was like you had to bring the bag with you everywhere you went. But now in you know, if she's in her dorm room, where she's in our house, she can walk away from the orange link and still has a good connection to it. So that's become less of an issue over time. And then I assumed we're gonna go to the dash version and, and lose that. That.
David Burren 1:53:42 So we never had the arrows here in Australia. So they finally got approved but never sold here. And then eventually they tried to sell but they decided to do it with the dash, they switched over. So the the reason that came to mind is I've been an iPhone user for well over a decade. But I don't use the iPhone for my diabetes, I use an Android phone. So I'm carrying two phones, right? My Android, Android phone is like,
Scott Benner 1:54:16 teeny, tiny. Yeah.
David Burren 1:54:19 Almost the size of my palm, right. And it just had enough battery to run all day. And it's doing all the stuff. It's sitting in the background. And it displays an outdoor watch. So I can just see my CGM data at any point if I need it. Yeah, but I'm happy during that second device. Whereas some people come to these systems say I'm an iPhone user. I, I wouldn't touch Android. That's, that's the dark side.
Scott Benner 1:54:48 I don't care about that. You're basically using your controller as well just didn't come from a company, honestly. Right by using
David Burren 1:54:57 and in fact, it's spades. way hidden in a pocket most of the times, I am a guy, I sometimes wear cargo pants, I have a lot more pocket options than many girls. I do understand this. Yeah.
Scott Benner 1:55:08 It just doesn't want to. I don't know if you should say like the idea of holding two devices I eat if I offer two phones, she'd be like, No, I don't I mean, I don't know why you would. But I mean, she wouldn't want to do that either. Like she just says she's trying to be very minimalistic with what she's carrying. So she's doing a good job, her bag for diabetes is it's tiny, it's got a phone in it, that orange link, G voc meter, the Contour, Next One meter test strips, and, you know, some gummy bears and a juice box and she gets it all into this little tiny thing. It's pretty crazy. But yeah.
David Burren 1:55:44 And the other thing that came to mind was sort of paraphrasing. One of the other things we were talking about in terms of people look at the stuff that's working for me with my hands free loop system. Let's not loop with a capital hands free looping system. And say, Well, you don't have to do any work. But then I can point it out to them and various friends of mine, who were there in conversations turn around, say Yeah, but he put in a lot of learning to get there. He did a lot of work early on to work out how to control it. And now he can take the benefit of hands free. So part of the the thing that we're hoping to get out of things like this trial and other stuff is more knowledge about how to actually turn it on for people without them having to put in all that homework.
Scott Benner 1:56:34 Yeah, no, that's gonna be the next big step right is not having to understand the background to make it do all these amazing things. So I don't know, like I've seen some people try to make that turn that into a business. I don't know how well that'll work out as time moves forward or not, but it seems it's a weird thing to be involved in, you know, setting up a do it yourself algorithm to give somebody else insulin like it's, I don't know, it sounds like you're gonna have to sign a couple of things and say, you're not holding anybody responsible in the beginning. To get to that what you know,
David Burren 1:57:07 well, I'm dealing with algorithms to give myself insulin. So if I make modifications to the code, which I occasionally do, it's, I'm running them, I've got a bank of test phones and test pumps here that are running on a copy of my CGM feed to make sure they're doing the right thing. And eventually, I'll decide yes, I'm willing to run that myself. Don't have to go through ethics approval once all sorts of stuff to do that. So when it comes time to running the algorithms through the clinical trials, that will give the evidence for it. Hopefully, at some point, a commercial company will say, Well, we will take that we'll make a product out of that using that algorithm, which has been proven. So I hope that'll I don't care if someone makes money out of selling that. Yeah. Hopefully, it'd be nice if I can earn a living along the way, somewhere as as well as the help I need to do but the end goal is improving everyone's lives. Yeah,
Scott Benner 1:58:09 I always think that like, like when I'm how God what's his name came along and said, We're going to bring a version of loop to, to mark it. God white power, the
David Burren 1:58:21 title tide pool?
Scott Benner 1:58:23 I mean, I'm starting to feel like that's so long ago, I can't remember the word tide pool is easy to like, and I understand that. You don't I mean, like I understand the processes. Is, is what it is. But I mean, by the time you get that thing through, there's so many more versions of it, you think, well, you should have started with that one. You know what I mean? And I guess that's also if you make that decision, you'll never get to the end. But it is what's exciting about people doing it in a in a do it yourself atmosphere is that, you know, I mean, something comes out and they go, Okay, we'll adapt it, we'll test it, you know, we'll get a few people together, we'll make a beta test out of it. We feel comfortable giving it out to people here, you know, give it a shot like that stuff doesn't isn't taking three years when it's being done by regular people. So no.
David Burren 1:59:10 So generally, the do it yourself stuff is always gonna be a little bit ahead in terms of features and functions. Sure, hopefully people do it in a safe way. Yeah. Many of us are keeping all the safety in mind when we're designing this stuff. I've seen all the meetings, I've heard an endo stand up and ask the question, now that there are all these commercial systems available. Why would anyone why would you use it yourself system that you have to build yourself? And it's because it's current technology. It's not technology from three years ago. It's got it's got more features. Not everyone will want to do this, but that's why I do it. Yeah. There's
Scott Benner 1:59:53 no reason why we should take any kind of options away from people like I don't care if it gets to Under Yeah, I guess
David Burren 2:00:02 his his thought is, why do I need to deal with this problematic dry stuff now that there's a commercial thing. So
Scott Benner 2:00:09 I can see feeling that way, I can also see like, I'm not gonna lie to you, it's still like going into I'm so bad at this, I don't even know, the program on the Mac that runs the the simulator and then puts it on your phone is called Xcode, right? And so and every time I look at Xcode, I don't know what I'm looking at. I know where I have to click, and I know what I have to do. But if you asked me to explain any of that to somebody, I'd be like, I don't know what any of this is. And so I get not wanting to feel like that, because it's uncomfortable. You know, I, I sent a complete, my daughter got a new, you know, got a laptop when she started school. And then got another one when she started college, and the one that she was done with after high school was shot, it's basically useless. And she's like, Well, what do we do with this, and most of the time, we would trade it in for credit or something like that, and try to, you know, make a little money off of it. I was like, keep it, we'll put X code on it. And you can take it to school with you because Xcode wouldn't even fit on the laptop that she had, along with all the other things she needed for school, I get not wanting to be involved in all that. But being able to text her last night and say, hey, it looks like you needed a secondary Bolus, or, you know, being able to look at a meal remotely and say, hey, the algorithm is struggling, because I don't think it has enough autonomy, you should go back to the meal from two hours ago, and tell it it was 75 carbs, not 65 carbs, like that. And then all of a sudden the algorithms like oh, I didn't know that. And then bang, it works. And like that kind of stuff is. It's pretty great. I can't lie about that. You know that stuff is? It's pretty damn great. So anyway, David, this was really wonderful. I appreciate you doing this with me. I'm sorry. I kept you so long. But thank you very much.
David Burren 2:01:56 It's totally 2am
Scott Benner 2:01:59 Well, that's why you don't know you're half of you at this point. You're just like, Ah, it's all good. But
David Burren 2:02:05 I'm a night owl. I'm a night owl. Thank you for the chat. No, I appreciate it. For people on the podcast. I
Scott Benner 2:02:12 know I'm sure people are gonna love it. I really do appreciate you taking the time. And I know it's hard to get on the show. And it takes forever. So thank you for being patient.
David Burren 2:02:20 And people with can message me on the Facebook group on there?
Scott Benner 2:02:25 Yeah, and and I wanted to say to your bionic wilkie.com. Is that right? It's dot com. That is correct. Yeah. Excellent. So people can see some of the stuff you were talking about there. It's great website. Well, I want to thank David for coming on the show and sharing all that great diabetes knowledge with us some really astonishing stuff in this one. Thanks also to touched by type one. Don't forget to go to touched by type one.org and find them on Facebook and Instagram. Give them a follow. Check out what they're doing. Long, longtime supporter of me and the podcast. Hope you can support them. If you're enjoying the show, tell someone else about it. share this episode with them. Go find the private Facebook group Juicebox Podcast type one diabetes. And of course subscribe and an app. Amazon music, Apple podcasts Spotify wherever you get your audio you don't I mean, Subscribe and follow. Thank you so much for listening. I'll be back again very soon with another episode of The Juicebox Podcast.
Please support the sponsors
The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
