DIY 'loopers' take diabetes into their own hands
When I was twelve years old and in hospital, just after I was diagnosed I was given a book as sort of had a manager on diabetes book, and it had a diagram a closed sick diagram of an artificial pancreas closed system, and I absolutely loved it. I really didn't enjoy diabetes. And so, I tend to that page all the time a really believed that that was coming. That's Marianne patent. She's from Brisbane, and she has type one diabetes, and this is the story of how she built her own oughta fischel pancreas. I'm James Berlin. This is the sign show and today, we're exploring the idea of people taking tech into their own hands. But first, let's go back to Marianne. She was diagnosed with type one diabetes almost forty years ago in the nine hundred ninety s it was very tricky to manage back, then we had a test tube. We had to do it away a p into it, and we used clinic tests, tablets to give us some vague sense of what our blood sugars done in the preceding hours, type one diabetes means you don't produce insulin or not enough insulin's, a hormone made in the pancreas, and it helps the body move glucose in the foods. We ate from out blood to as cells, where it's turned into energy for people with type one diabetes, the level of sugar in their blood can get out of control. Your try. To manage your blood sugar levels so that you don't dip into hyperglycemia, which can cause you to have pretty much like a panic attack that could happen without warning really. It's sort of like walking tight rope every day. So you're trying to keep your levels above that. But I need just above that, you don't want them to be high if the levels are high then you get worried about longtime diabetes complications, and maybe you've experienced some of those, it's, it's quite a mentally address tough to keep your blood sugars in that really healthy range and the long term, just so you always feel like there's this sort of Democles hanging over your head. And with regards to your future, and developing blindness kidney failure, or something like that. The tech that Marianne was using back, then left a lot to guesswork. So we actually had no way to detect topic. Let's mea apart from, you know, whether we were shaking sweating feeling confused. It was really stabbing in the dock back then from germs, literally, I mean we get used to it where real stoic says, diabetic sway just poke and prod and precare cells all the time. And don't think about it, but certainly as young teenager, the first time I had to use a bloodletting device. It was pretty awful equipment. The blood grind, it was quite savage. Those no white to chew not to be a bit gentler. It really did get the blood out, these gruesome tests helped Marianne to see if her blood sugars were in the right spot. And the majority of people with type one diabetes manage, in a similar way today test strips and a glue commented to check blood sugars and injections of insulin. Sometimes three or four each day to keep them in the Goldilocks zone. The have been some innovation since then though, some people have into. Pumps, which inject a steady supply insulin day and not the pump just gave me a little bit more freedom. You know, it was still pretty blunt tool in retrospect, but it did help to get rid of some of the rigidity of the diabetes. Then there are also continuous glucose monitors as the name suggests these provide a real time readout of a person's blood sugar levels. They're also known as CGM and it's these pieces of technology that opened the door to the holy grail Marianne had read about as a child in the hospital. The artificial pancreas, it was really only at the end of two thousand seventeen I discovered the we are not waiting movement. And that's a really, really clever. People had just reverse engineered insulin pump protocols and sit up these February's algorithms to manage diabetes in a really high fidelity treatment Conaway of it's just totally changed for me the whole nitric diabetes itself. The movement Marianne mentioned just now started under the Twitter hashtag, we are not waiting it since out into social media groups in person made up and increasingly diabetes and med tech conferences around the world. It brings together people who built a building a do it yourself. Pancreas one person who got involved in the movement early on is Jim medicine. It was always like in fifteen years like you all have to worry about this, like software. Sorted it out. And they were saying that for thirty years, and nothing Ed com. Jim was diagnosed with type one diabetes when he was ten years old after meeting with some of the founders and develop as early closed loop systems. He decided to build one for himself. I don't think my life sobbed me for a while. I definitely wasn't coming to bed I was working till midnight, and she didn't understand. I just kept ordering stuff off of Amazon frustrated by the white for commercial solution. Jim joined the growing group of people. -veloping their own automated pancreases and taking control of their diabetes. But how exactly does a DIY pancreas work? I visited Jim at his home in Sydney. So he could show me the first thing that happens is I built an installed myself an app onto my iphone and that app talks to both the insulin pump and the CGM which I wear us. It decks com. CGM the pumps attached to Jim's body, and the CGM is checking his blood sugars, but those devices are usually completely separate. They don't talk to each other. At least not unless you do a bit of tinkering. What happens is every five minutes, the decks com app on the phone reads in my blood glucose levels, those just come in. So we constantly know where I'm at, at the same time using this conversion device called Riley link. It can do the translation between iphone talk and. Pump talk. The Riley link is a small circuit board cased in plastic. It's about the size of a matchbooks. It will also query the pump and get content information about any activity going on with your insulin. And then it can also send commands to make changes in your insulin levels inside the iphone app. I have settings that would say if I'm going up at this rate, these are the right ratios to help bring me down. So Jim GM is measuring his blood sugars and talking to his iphone, which is then adjusting his insulin on the fly by combining all of these things together. He's essentially built his very earned bespoke pancreas, and it can see all of this. Pancreas, Dada coming in on his smartphone. In real time. It's pretty amazing to watch. I just couldn't stop watching it. It was really good. I started takes go. My diabetes. Pals telling them ev- at least great Brian that was controlling my diabetes. Finally, in mid twenty Marianne decided to build her own artificial pancreas to, because they systems are often cold closed loop systems, people who have them sometimes call themselves lupus, she read about how to do it online. It was a learning curve, and they were a couple of times when I had a high pie but had all the usual alarms that had made to that the first few weeks were about trying to find chain my settings. And she did start to see improvements. In the way, who diabetes was being managed, even in the first few weeks automatically automatically fabulous change in hba one St. so hitch onc- since fell black heated him a globe in basically a measure of. How much sugar Kubwa hydrate this attached to the hemoglobin molecule. This is the molecule that carries oxygen around the bunny, Dr T, and Ming-hung is an endocrinologist, who works with people who have talked one, diabetes, hate onc- sounds complicated. But it's really just an indicator of the amount of sugar in your blood, or the time if you'll blood sugar levels are high for the live span off that molecule, which is about three months, the measurement, you're going to get is a high number in medical circles. A lot of the long-term trials of complications outcomes have been based on a one, c over last year's there's interest in knowing what the numbers are Marianne, Jim both saw the hba one, c head south after they started looping, get dropped from eight point five or something down to six point IOT. And now, sort of in the lice sixes. I mean that's teiken may add of the risk of diabetes complications. Group into the probably never have to worry about complications group, which is brilliant. That's very stock difference. So my hemoglobin A, one, c was an eight point zero before I started I it's actually quite amazing how quickly those things can change. I think I was in the high five within a couple of months, and then essentially, I am at a steady state now of between five point zero and five point two maybe five point three four. My eighty one sees pretty much consistently. But hey ch- BA onc- isn't always a reliable measure of good health, someone who's blood sugars yoyo, lots of highs. Lots of lows could still average out to what seems like a good number. What's also important is how long you spend in range in other words in that Goldilocks zone. What I found is now that I've been looping the edge cases are so few and far between. I'm pretty much very concise. Distant. We know that knowing what someone's time in range is another important parameter, because it's perhaps, more. Reflective of what's actually going on from day to day basis? Dr Tianming whom has conducted a survey of a stray Lian lupus. It was interesting to see the impact having better quality sleep was a standout feature there. And I can understand the significance of that report, if you use an insulin pump, and you have let your lowest that are not stable, you can get alarms going off in the middle of night. And so you're this have disturbed sleep and not only you, but your partner and your whole family households for. And so just by being able to sleep better makes a difference. This is early research with a very small sample size nineteen respondents reporting in results. But all of them listed improvements in their blood sugar levels and their time in the. Cody look soon doctor who says they also wanted to take things into their own hands people were doing this because they wanted to take control off the diabetes unknown Thames using new technology. And so these people who are quite motivated, also to some extent, happy to explore and to take a risk to manage your diabetes using this method. Were you ever concerned about tracking devices in raise that the manufacturer, perhaps, unintended not really? I know some people are I it sort of depends. I think with the pump the reason why we can communicate with the puppies. The early versions of the Medtronic pump were intended to have that communication. So really the only part that was a little bit hacky was how we received that communication. But that's real information going back and forth between the pump and the looping system. We weren't tweaking at all with any of the readings from the GM. So that was really on label in terms of how the manufacturer had had produced that. So I wasn't really too worried about the technology is certainly the first question I always get asked the pumps and monitors. Loop is a typically approved by the TGI industraliazed, but they haven't been explicitly approved. For the purposes of a closed loop system, and neither have the paces of open source software used to run the system. This doesn't concern Marianne there. There are lots of safety settings. There is safety settings dialed into my pumps. So there's really only so far. The algorithm can influence things. I feel it's good to reassure people. But this system has been set up extremely thoughtfully to ensure safety. In the US the food, and Drug administration has fast tracked the approval of commercial close loop systems. But last month it also released a warning about DIY systems after a report of a patient needing medical assistance. The person say GM sent incorrect values to their looping system, giving them doses of insulin that were too high and causing their blood sugars to crash, diabetes, Australia. The country's peak diabetes advocacy pony doesn't endorse the systems. It says people who choose to go DIY do so at their own risk. But it also says people can't be stopped from pursuing their own solutions. Especially when commercial options have lagged behind that's the position, Dr Tianming whom takes to personally my belief is that people will do what they want to do, and as a physician one has to decide whether you're going to support them and I think it's important. This people because diabetes is not just only about the blood sugar levels is a lot more to it than that. And so if you don't support this people, we wear, you're going to go to one needs to draw a line somewhere about what can want advice in Tim sof people using systems that they've built themselves. I mean, he's very clear that they build systems knowing that it is at your own risk. I think a lot of people go in with the is open. I think a lot of people get benefit from it, and it's just that the moment I don't think it's something we can openly recommend, which is a different level altogether of care at last count, about one hundred people in ustralia report using closed loop systems. It's a tiny fraction of the turtle type one diabetes population, but interest in DIY is growing and commercial clerk sleep systems are coming down the line to the first of these the Medtronic six seventy g became. Available in Australia earlier this year. Dr whom says we need a clear picture of the health outcomes lupus, get than to be more research in this area in professional circles. Research goes a long way, the problem is finding money to do research. I think the, the DIY population would be keen to participate given the opportunity Marianne patent agrees. More research is needed, but also with different funding. Modal looping is expensive. It's restricted to those who can buy the required pots have the technical ability to set it up. And then there's the ongoing costs of continuous glucose monitoring. It's extremely expensive in a strategy of full, I think Eighty-eight percent of people with type one diabetes at alz. And they aren't eligible for any Rabai all subsidy on the through the national diabetes supplies game old for a private health. Sheri- on nitrate people at the moment that wanna leap, I spiked to a friend yesterday that really wants to start. She's had diabetes since nineteen seventies. But she just said, Luke Bryan aren't kennel to food the CGI my count. I just can't do it. But for those who can leaping provides a new sense of control by condition that stays with them for live people that don't have diabetes when they're trying to figure out what we're doing here. What they don't realize is diabetes is this thing that's always there. It's never gonna go away, you could be on the toilet. You could be an important meeting. You could be chasing your daughter around all of the things and stresses that you have in your life. Diabetes is always there, and you're always having to make adjustments for that, and everything that you do, and it's all guesswork, people think, oh, maybe what you're doing this dangerous diabetes is dangerous like it really is. You have to learn in adapting and make lots and lots of guesses, literally hundreds of them every day. And so what I think is great about this automated. Pancreas. System is I can program in the things that I know for me, including how much I'm going to drop if I'm exercising or how to adjust it if I know I'm going into a big stressful meeting or something like that at work. It knows all of those things over time like it can just with the president of button. It can make those changes for me. The reality is, is. I'm not always there for every single decision. One hundred times a day. I'm not there. I might have to wait. Twenty minutes to do something that would be optimal to do now. And so it's actually much safer. It's not much more dangerous than just having diabetes.