WEBVTT - How To Build Your Own Artificial Pancreas 0:00:00.200 --> 0:00:10.520 Hm hm hm. What do you do when a piece 0:00:10.560 --> 0:00:14.480 of your body's hardware goes haywire? If you have Type 0:00:14.520 --> 0:00:18.720 one diabetes, that damaged hardware is your pancreas. There's no 0:00:18.760 --> 0:00:21.680 way to fix a broken pancreas, but you can build 0:00:21.680 --> 0:00:26.960 a new one. Welcome to Prognosis. I'm your host, Michelle 0:00:27.000 --> 0:00:33.479 fake Cortes. For the next eight weeks, we will be 0:00:33.520 --> 0:00:37.839 exploring science and technology and medical research. We'll look at 0:00:37.880 --> 0:00:40.320 how the treatments of tomorrow get into the hands of 0:00:40.400 --> 0:00:43.600 patients who need them the most. Along the way, we'll 0:00:43.600 --> 0:00:48.080 meet people living on the edge of innovation. There's the 0:00:48.120 --> 0:00:52.760 scientist genetically engineering frogs in his garage, drug company researchers 0:00:52.840 --> 0:00:56.320 using newly unlocked secrets of the body to cure deadly diseases. 0:00:57.160 --> 0:00:59.320 And we'll hear about one man's quest in the desert 0:00:59.400 --> 0:01:02.280 to turn as achedelic drug into a treatment for depression. 0:01:03.800 --> 0:01:05.720 We begin our journey with the do it yourself device 0:01:05.760 --> 0:01:19.040 that replaces one of the body's most critical organs. One 0:01:19.040 --> 0:01:22.520 point three million Americans have Type one diabetes. That's the 0:01:22.560 --> 0:01:25.800 most severe kind. It develops one cells in the pancreas 0:01:25.840 --> 0:01:29.160 that make insulin stop working. Why it happens is still 0:01:29.200 --> 0:01:33.200 a mystery. Insulin is the hormone that converts food into energy. 0:01:33.800 --> 0:01:37.240 A healthy pancreas is a marvel pumping out precise amounts 0:01:37.240 --> 0:01:41.120 of insulin at just the right time. There are dozens 0:01:41.120 --> 0:01:45.640 of things that affect how much is made. Eating, drinking, exercising, sleeping, 0:01:45.760 --> 0:01:48.200 you name it. It's a problem. If you don't make 0:01:48.240 --> 0:01:50.680 any sugar builds up in the blood. It comes up 0:01:50.680 --> 0:01:53.120 your organs like the kidneys in the heart and can 0:01:53.160 --> 0:01:56.920 cause an early death. Diabetics can inject replacement insulin, but 0:01:57.000 --> 0:01:59.480 they have to figure out how much to give and when. 0:02:00.240 --> 0:02:03.640 Answering those two seemingly simple questions is what makes life 0:02:03.640 --> 0:02:06.840 with diabetes miserable. You have to take on the duties 0:02:06.880 --> 0:02:10.880 of a healthy pancreas all day, all night, three and 0:02:10.919 --> 0:02:13.800 sixty five days of the year. There are tools to 0:02:13.840 --> 0:02:17.520 help glucost monitors track blood sugar levels so people can 0:02:17.520 --> 0:02:20.519 calculate how much insulin they need, and there are pumps 0:02:20.560 --> 0:02:23.120 to deliver the insulin, but you have to tell it 0:02:23.160 --> 0:02:26.480 what to do. Americans spend more than eight billion dollars 0:02:26.480 --> 0:02:29.040 a year on these devices, but no one's been able 0:02:29.080 --> 0:02:31.480 to get them connected and working together. To deliver the 0:02:31.560 --> 0:02:34.079 right amount of insulin the way a real pancreas does. 0:02:36.040 --> 0:02:39.840 Until now. This is a story about strangers coming together 0:02:39.880 --> 0:02:43.040 from all over the world driven by a desperate need. 0:02:43.600 --> 0:02:46.200 They banned it together on social media to take matters 0:02:46.240 --> 0:02:49.600 into their own hands. Now, just to be clear, these 0:02:49.639 --> 0:02:52.880 folks didn't build a mechanical version of the pancreas. What 0:02:52.960 --> 0:02:56.079 they're actually doing is linking their insulin pumps to their 0:02:56.080 --> 0:03:00.000 glucost monitors and getting them to work together without any 0:03:00.040 --> 0:03:04.800 um involvement. None of this is FDA approved. Still, thousands 0:03:04.800 --> 0:03:07.240 of people have tried it out on themselves and on 0:03:07.280 --> 0:03:11.000 their diabetic kids, and they love it. More are signing 0:03:11.080 --> 0:03:21.919 up every day. Here's Bloomberg's Naomi Kraski with the story. 0:03:24.000 --> 0:03:28.600 Building your own pancreas can be pretty intimidating. There's software 0:03:28.639 --> 0:03:32.200 code to install and Bluetooth and radio signals to sink 0:03:32.680 --> 0:03:36.440 among the four electronic devices that you'll need to link together, 0:03:36.920 --> 0:03:40.160 but there will be lots of people to help. Someone 0:03:40.200 --> 0:03:43.280 you're likely to come across early on is a mom 0:03:43.320 --> 0:03:47.080 from outside Toronto named Kate Farnsworth. Some people call her 0:03:47.120 --> 0:03:50.000 Saint Kate because she spent so much time helping people 0:03:50.040 --> 0:03:54.880 build their own diabetes technology. Kate lives in a quiet 0:03:54.920 --> 0:03:59.120 suburb about an hour northwest of Toronto. She realized that 0:03:59.200 --> 0:04:02.200 something was up with her daughter, Sydney more than six 0:04:02.280 --> 0:04:05.920 years ago. Sydney had started drinking a lot of water 0:04:06.120 --> 0:04:11.080 and eating a lot more than usual. I used to 0:04:11.080 --> 0:04:13.400 say she was eating like a teenage boy, but she 0:04:13.480 --> 0:04:16.159 was an eight year old girl. We used to have 0:04:16.240 --> 0:04:20.279 to pack an extra snack after school and leaders of 0:04:20.640 --> 0:04:23.400 extra water, and she'd cry when she ran out of water. 0:04:24.360 --> 0:04:27.719 But even with all that extra eating, Sydney was losing weight. 0:04:28.400 --> 0:04:33.040 Kate googled her symptoms and diabetes popped up. So I 0:04:33.080 --> 0:04:36.880 took her to the family doctor and the family doctor said, well, 0:04:36.920 --> 0:04:39.359 that's an easy test. We can just poke her finger 0:04:39.520 --> 0:04:42.400 and see what's going on. Don't worry about it. And 0:04:42.440 --> 0:04:45.520 the nurse poked her finger and she turned to the 0:04:45.520 --> 0:04:48.880 other nurse and she said, it's not working. It's not 0:04:49.080 --> 0:04:52.279 It doesn't say a number, it just says high. And 0:04:52.320 --> 0:04:55.320 the nurse said that's because her blood sugar is too 0:04:55.440 --> 0:04:58.120 high for the meter to read. And that was our 0:04:58.640 --> 0:05:03.400 introduction to die beats. Sydney is now fifteen years old. 0:05:03.839 --> 0:05:06.440 She still remembers how tough things were when she first 0:05:06.440 --> 0:05:12.400 got the diagnosis. I was terrified because that's like I 0:05:12.560 --> 0:05:16.279 was eight. I didn't want anything like this happening, and 0:05:16.320 --> 0:05:21.479 it was just it was life changing. Yeah, people with 0:05:21.560 --> 0:05:26.040 type one diabetes need to take replacement insulin, but messing 0:05:26.040 --> 0:05:30.040 at the dosage can have catastrophic results, including going into 0:05:30.040 --> 0:05:33.520 a coma or even dying. And figuring out how much 0:05:33.560 --> 0:05:37.320 to take is really complicated. There are a ton of 0:05:37.360 --> 0:05:48.320 things that affect blood sugar. So sleep can affect blood sugar, anxiety, adrenaline, food, stress, um, exercise, 0:05:49.279 --> 0:05:53.040 but just basically everything affects blood sugar. Roller coasters make 0:05:53.080 --> 0:05:57.000 her blood sugar drop, walking to school makes her blood 0:05:57.000 --> 0:06:01.840 sugar drop. I've heard people say that boys walking by 0:06:01.880 --> 0:06:04.360 and make their daughter's blood sugar go up as well. 0:06:04.839 --> 0:06:08.000 I have not noticed that myself, but I'm not paying 0:06:08.000 --> 0:06:11.360 that close attention. So Kate and her husband Dave were 0:06:11.360 --> 0:06:14.599 getting up several times a night to check Sydney's blood sugar. 0:06:15.160 --> 0:06:18.000 This is something that I heard a lot from parents 0:06:18.000 --> 0:06:21.400 of kids with diabetes. When your kids are asleep, it's 0:06:21.440 --> 0:06:24.360 hard for them to know when blood sugar levels are 0:06:24.400 --> 0:06:28.200 dropping too low. There are these little devices called continuous 0:06:28.200 --> 0:06:32.279 glucose monitors or cgms for short, that sound and alarm 0:06:32.320 --> 0:06:34.720 when their readings are dipping too low. But they can 0:06:34.760 --> 0:06:37.760 be really hard to hear, and until recently, you couldn't 0:06:37.760 --> 0:06:40.760 tune into them from even a few rooms away. They're 0:06:40.800 --> 0:06:47.919 also expensive. At first, Sydney didn't even have one, so 0:06:48.040 --> 0:06:52.120 Dave would check Sydney's blood sugar at midnight before he 0:06:52.240 --> 0:06:56.400 went to bed. Kate would set her alarm for three am, 0:06:56.400 --> 0:06:59.360 when she set another alarm for six am. They were 0:06:59.480 --> 0:07:02.680 so tie all the time. Kate thought there had to 0:07:02.720 --> 0:07:09.119 be a better way. One day, I was googling UM, 0:07:09.120 --> 0:07:13.560 researching whatever you want to call it, all things diabetes, 0:07:13.640 --> 0:07:16.320 and I came across a blog and it had a 0:07:16.320 --> 0:07:19.880 little girl who had a backpack with a cell phone 0:07:20.120 --> 0:07:24.160 connected to this receiver Sydney wears, and it was broadcasting 0:07:24.160 --> 0:07:27.680 their blood sugars to their parents. And I thought, that's 0:07:27.840 --> 0:07:29.760 that's what I need. I need to be able to 0:07:29.800 --> 0:07:32.680 see her blood sugar when she's not with me. Kay 0:07:32.760 --> 0:07:35.400 found a group of parents who had managed to pull 0:07:35.560 --> 0:07:40.640 data from cigns onto their smartphones and watches. This group 0:07:40.720 --> 0:07:43.120 is called Knight Scout and it came up with the 0:07:43.240 --> 0:07:47.400 first big d I Y advance. It helped parents track 0:07:47.880 --> 0:07:50.840 how their kids were doing at school, at night, or 0:07:50.880 --> 0:07:55.960 any other times when they weren't together. Up until that time, 0:07:56.480 --> 0:08:01.640 you had to be within fifteen feet of the continuous 0:08:01.640 --> 0:08:06.520 glucose monitor receiver that you received from uh dex Comm 0:08:06.600 --> 0:08:09.520 or Metronic. This allowed you to be anywhere in the 0:08:09.520 --> 0:08:14.880 world and still see your blood glucose values. That's Weston Nordgren, 0:08:15.040 --> 0:08:19.040 a dad from Bakersfield, California. He helped start Night Scout 0:08:19.120 --> 0:08:23.760 in a The group operates on the principle of pay 0:08:23.840 --> 0:08:27.240 it forward. Every single family that set up that d 0:08:27.360 --> 0:08:30.720 I Y system was supposed to help someone else figure 0:08:30.760 --> 0:08:34.520 it out too, So they started with five families, and 0:08:34.559 --> 0:08:40.560 what happened after that defied everyone's expectations. Within six weeks 0:08:40.600 --> 0:08:44.920 of creating that group, there were one thousand, seven hundred families. 0:08:46.400 --> 0:08:53.240 By September, there were seven thousand families. By December there 0:08:53.240 --> 0:08:59.400 were ten thousand families. So it just exploded. So now 0:08:59.679 --> 0:09:02.800 parents could watch their kids blood gluecoats. That was a 0:09:02.840 --> 0:09:06.120 big deal, but some people were already thinking of taking 0:09:06.160 --> 0:09:09.920 it further. The next advance would have been impossible if 0:09:10.000 --> 0:09:14.720 not for a blunder by Metronic, the world's biggest medical 0:09:14.800 --> 0:09:17.760 device maker, left a security gap and some of its 0:09:17.760 --> 0:09:22.520 insulin pumps the wireless radio frequency link was open to hackers. 0:09:23.200 --> 0:09:27.240 Ben West, a programmer and diabetes patient in California, found 0:09:27.280 --> 0:09:30.520 the open back door and walked right through. I actually 0:09:30.559 --> 0:09:33.920 don't describe it as a backdoor. Um, it's more like 0:09:33.960 --> 0:09:37.240 the front door wasn't put on, it wasn't locked, or 0:09:37.280 --> 0:09:39.920 it wasn't clear. No, like, there's just no door. There's 0:09:39.920 --> 0:09:45.440 just there's just no door. What door. That explained to 0:09:45.520 --> 0:09:48.280 me that there are two ways to protect against a hack. 0:09:48.679 --> 0:09:51.880 You can make a strong defense or you can just 0:09:52.040 --> 0:09:55.320 hide it. Try to keep the soft and vulnerable spot 0:09:55.320 --> 0:09:58.720 a secret so it's safe. And that's the choice the 0:09:59.080 --> 0:10:02.800 Metronic made. They designed this device. We're just gonna leave 0:10:02.840 --> 0:10:05.200 it so that it's easy for us to test and 0:10:05.240 --> 0:10:08.400 get out the door and ship very quickly. We'll keep 0:10:08.400 --> 0:10:11.240 how it works a secret, and so we're claiming that 0:10:11.280 --> 0:10:13.520 no one will know how it works, and since no 0:10:13.559 --> 0:10:15.560 one knows how it works, no one will ever attack it. 0:10:15.840 --> 0:10:19.280 That that's basically the tactic they took. Now it turns 0:10:19.320 --> 0:10:22.080 out that you know, I came along, and I said, well, 0:10:22.160 --> 0:10:25.040 it's on my body, and I actually need to know 0:10:25.080 --> 0:10:27.360 how it works in order to make sure that it's 0:10:27.360 --> 0:10:30.240 not doing the wrong thing to my body. Then started 0:10:30.280 --> 0:10:33.600 the project in winter of two thousand nine. He was 0:10:33.640 --> 0:10:37.000 already working at that point as a software engineer, and 0:10:37.040 --> 0:10:39.400 then he got a job at a cloud computing startup. 0:10:39.960 --> 0:10:42.679 He didn't have a whole lot of free time, so 0:10:42.720 --> 0:10:45.120 he would take his metronic pump home with him to 0:10:45.240 --> 0:10:48.880 his family over Christmas and New Year's and we would 0:10:48.880 --> 0:10:52.480 spend the you know, almost the entire holiday just working 0:10:52.520 --> 0:10:54.560 on this thing. You know, we would take poster paper 0:10:54.679 --> 0:10:57.640 and start trying to figure out individual bits and bites 0:10:57.679 --> 0:11:00.880 and the meaning of individual codes, and we would try 0:11:00.880 --> 0:11:03.240 to dissect you know, what are these time stamps and 0:11:03.280 --> 0:11:06.520 how are they encoding times and dates? And we would 0:11:06.600 --> 0:11:11.040 kind of um pick these different topical areas and really 0:11:11.080 --> 0:11:14.800 intensely attack it over the holiday period, and those were 0:11:14.880 --> 0:11:18.120 usually very very productive sessions. What what we would do 0:11:18.240 --> 0:11:21.240 is kind of form necklaces um out of these things, 0:11:21.280 --> 0:11:24.160 so that you know, the glucoast meter plugs into a 0:11:24.280 --> 0:11:27.720 USB cable and the USB cable goes into a computer 0:11:27.880 --> 0:11:31.240 like a gumsticks or a raspberry pie, and then that 0:11:31.280 --> 0:11:34.360 goes back into another USB cable that goes into another thing. 0:11:34.480 --> 0:11:36.440 So pretty soon you've got this thing that kind of 0:11:36.480 --> 0:11:39.920 twists itself around and loops around, and we would kind 0:11:39.920 --> 0:11:43.280 of wear those around so that so that we could 0:11:43.280 --> 0:11:48.800 continue working while moving around the house, I suppose. So 0:11:48.880 --> 0:11:52.080 after about five years of work, Ben managed to reverse 0:11:52.160 --> 0:11:56.600 engineer the pumps communications code. That means he figured out 0:11:56.640 --> 0:11:59.880 how to tell the device what to do. Now the 0:12:00.040 --> 0:12:02.920 d I wires had two pieces of the puzzle. They 0:12:02.960 --> 0:12:06.760 would need to make an artificial pancreas they had night Scout, 0:12:07.160 --> 0:12:10.720 which was pulling the blood glucos data off glucose monitors 0:12:11.000 --> 0:12:13.560 for Sydney and Kate. That meant either of them could 0:12:13.559 --> 0:12:16.480 watch Sydney's blood sugar from a smart watch while Sydney 0:12:16.520 --> 0:12:20.280 was in school or if she was asleep. Now Ben 0:12:20.320 --> 0:12:23.600 had hacked the pump, the final piece of the puzzle 0:12:23.800 --> 0:12:27.440 would be an algorithm. That's a script that shows a 0:12:27.480 --> 0:12:32.480 computer how to do a repetitive but complicated task like 0:12:32.679 --> 0:12:41.480 calculating insulin doses. Entered Dana Lewis. She lives in Seattle 0:12:41.640 --> 0:12:44.480 and she has diabetes. So if I sat down to 0:12:44.520 --> 0:12:46.720 have lunch, I would be looking at a plate of 0:12:46.760 --> 0:12:48.560 food and I would have to do math to figure 0:12:48.600 --> 0:12:51.400 out how many grams of carbohydrate around the food. I'd 0:12:51.440 --> 0:12:53.920 also have to look at what my current blood glucose is, 0:12:54.240 --> 0:12:56.000 and if I had a c GM, I'd be looking 0:12:56.000 --> 0:12:58.720 at the past couple of hours trying to visually predict 0:12:58.720 --> 0:13:00.560 in my head what is the freend of my blood 0:13:00.600 --> 0:13:02.920 suger what's going to happen. I also had to look 0:13:02.960 --> 0:13:05.559 at my pump and get the information about how much 0:13:05.600 --> 0:13:08.440 insulin I already had active in my body, and so 0:13:08.520 --> 0:13:11.440 I had to combine the current glucose kind of what 0:13:11.480 --> 0:13:14.440 has happened in the past, this insulin amount, predict what 0:13:14.440 --> 0:13:16.880 I was going to happen, add in the calculation of 0:13:16.880 --> 0:13:18.800 how much food and how that was going to impact 0:13:18.840 --> 0:13:21.560 my body, and decide how much insulin do I need? 0:13:21.960 --> 0:13:23.680 And not only how much insulin do I need, but 0:13:23.760 --> 0:13:27.400 how should I time it. Dana and her partner, Scott Librand, 0:13:27.840 --> 0:13:30.400 decided that it would be a lot simpler to let 0:13:30.400 --> 0:13:34.280 the computer do some of that calculating, so they wrote 0:13:34.320 --> 0:13:38.600 an algorithm. At first, it would only spit out recommendations. 0:13:39.280 --> 0:13:42.240 Then they took their project to a conference and they 0:13:42.280 --> 0:13:46.600 met Ben. It was June, and we stood beside him 0:13:46.640 --> 0:13:48.400 kind of demonstrating what we've been working on, and he 0:13:48.440 --> 0:13:50.760 was demonstrating the fact that he could read and write 0:13:50.760 --> 0:13:54.400 to this metronic pump. And it actually wasn't until a 0:13:54.440 --> 0:13:57.080 few weeks or months later that another light bulb went 0:13:57.080 --> 0:13:59.840 off and we went, hey, we've got this algorithm that 0:14:00.040 --> 0:14:04.080 takes data and predictionto the future. What should happen if 0:14:04.160 --> 0:14:07.320 we combined it with his code to talk between the devices. 0:14:07.880 --> 0:14:10.040 Instead of telling the human what to do, we could 0:14:10.040 --> 0:14:12.840 actually write directly to the insulin pump and tell it 0:14:13.160 --> 0:14:16.160 to give more or less insulin. So then they had 0:14:16.200 --> 0:14:18.880 to figure out how to close the loop. They didn't 0:14:18.920 --> 0:14:22.920 start out knowing exactly what they would build, but they 0:14:23.000 --> 0:14:26.520 just started working on the problem step by step, trading 0:14:26.560 --> 0:14:30.440 the ideas back and forth. So I live in Seattle, Scott, 0:14:30.480 --> 0:14:33.120 who was then my boyfriend, lived twenty miles away, and Everett, Washington, 0:14:33.360 --> 0:14:36.000 and Ben was based out of San Francisco, and so 0:14:36.160 --> 0:14:38.400 we would collaborate in a variety of ways. We would 0:14:38.480 --> 0:14:40.720 use a chat channel called getter, which is connected to 0:14:40.720 --> 0:14:42.560 get hub, where we would get on and start talking. 0:14:43.040 --> 0:14:46.520 We used Twitter. Um. We also just used phone calls 0:14:46.520 --> 0:14:48.640 where we would get on speaker phone and be programming 0:14:48.960 --> 0:14:51.000 and using the chat channel and also talking by phone. 0:14:51.040 --> 0:14:52.720 There was also times where Scott would need to go 0:14:52.720 --> 0:14:54.520 down to San Francisco for work, so he and Ben 0:14:54.520 --> 0:14:56.560 would beat up. Sometimes I would be in San Francisco, 0:14:56.600 --> 0:15:00.000 we beat up in person, you know, on nights and weekends, um, 0:15:00.040 --> 0:15:02.720 and really just kind of plucking away at Oh, we 0:15:02.760 --> 0:15:04.840 found a problem, let's resolve it. Okay, we found the 0:15:04.880 --> 0:15:07.520 next problem in the next obstacle, let's figure out how 0:15:07.560 --> 0:15:10.920 to tackle it. In December, the group finally felt like 0:15:10.960 --> 0:15:14.600 they had surmounted all of the obstacles. They enough finally 0:15:14.680 --> 0:15:18.000 felt confident enough to become the first human tester for 0:15:18.080 --> 0:15:21.920 her new artificial pancreas. Originally my plan was just to 0:15:22.120 --> 0:15:24.440 test it for a couple of hours, but I was like, 0:15:24.480 --> 0:15:26.920 you know what, I really I want to go to sleep, 0:15:26.920 --> 0:15:28.440 and I want to go to sleep with this thing working. 0:15:29.080 --> 0:15:31.680 And so we set up all of our backup alarms 0:15:31.800 --> 0:15:34.640 and I went off and went to sleep with the system. 0:15:34.680 --> 0:15:36.760 And I woke up the next morning and I felt 0:15:37.120 --> 0:15:39.680 better than I ever had before because I woke up 0:15:39.680 --> 0:15:42.280 with my blood suger in perfect range where I wanted 0:15:42.320 --> 0:15:45.000 to be. I hadn't been low overnight, my blood sager 0:15:45.000 --> 0:15:47.320 hadn't been high overnight. I wasn't interrupted in my sleep. 0:15:47.320 --> 0:15:48.880 I didn't have to drink a juice box. I didn't 0:15:48.920 --> 0:15:51.000 have to press a button on my pump. I got 0:15:51.000 --> 0:15:55.360 ten uninterrupted hours of sleep, and it was glorious. The 0:15:55.480 --> 0:15:58.520 d i Y community was all about open source, or 0:15:58.560 --> 0:16:02.440 sharing code, so Scott, Dana, and Ben wanted to share 0:16:02.480 --> 0:16:05.080 what they learned so that others could also feel and 0:16:05.080 --> 0:16:08.680 sleep better. But it wasn't just up to them. There's 0:16:08.760 --> 0:16:11.560 also the f d A, or the Food and Drug Administration, 0:16:11.920 --> 0:16:15.320 which regulates devices in the US. They were worried that 0:16:15.400 --> 0:16:17.880 the FDA would come down on them for sharing something 0:16:18.000 --> 0:16:21.760 they'd cooked up at home. In the end, after talking 0:16:21.760 --> 0:16:23.960 to the f d A, weighing the pros and cons, 0:16:24.320 --> 0:16:27.560 they decided to post their work online, with one important 0:16:27.600 --> 0:16:30.960 caveat the people who wanted to use it would have 0:16:31.040 --> 0:16:34.760 to build it themselves. First, only a few tried it out, 0:16:35.560 --> 0:16:39.240 then more and more. Kay was watching too. She was 0:16:39.320 --> 0:16:44.040 intrigued but also intimidated. It seemed very complicated to build. 0:16:44.760 --> 0:16:47.680 But then another member of the community designed a more 0:16:47.800 --> 0:16:51.880 user friendly version for the iPhone called Loop. In sixteen, 0:16:52.080 --> 0:16:55.080 Kate saw it in action. A friend's little boy was 0:16:55.200 --> 0:17:00.000 running around having his blood sugar automatically adjusted by the system. 0:17:00.080 --> 0:17:02.760 She started looking for the parts she needed. That same day, 0:17:03.360 --> 0:17:08.080 Medtronic had closed Ben's open door on its newer pumps, 0:17:08.600 --> 0:17:11.119 so Kate had to get ahold of an older model. 0:17:11.680 --> 0:17:15.600 Someone gave her one. Then she ordered a tiny Bluetooth 0:17:15.640 --> 0:17:19.760 equipped computer, which enabled the pieces of the Loop system, 0:17:19.800 --> 0:17:23.359 so the insulin pump, the glucose monitor, the iPhone app 0:17:23.400 --> 0:17:26.560 with the algorithm to talk to each other another d 0:17:26.720 --> 0:17:30.360 I wire. A dad from Minnesota named Peach Fomb had 0:17:30.400 --> 0:17:33.200 designed the device for his daughter and named it after her, 0:17:33.600 --> 0:17:50.640 calling it the Riley Link. Kate got to work. There 0:17:50.640 --> 0:17:54.080 weren't a lot of instructions to follow, but just enough. 0:17:54.880 --> 0:17:58.040 I built the app on her phone, and then I 0:17:58.160 --> 0:18:02.760 set up um the spare pump and the Riley Link, 0:18:03.040 --> 0:18:07.120 and uh the iPhone and let it run, but not 0:18:07.200 --> 0:18:10.439 connected to Sydney. I just filled the insulin pump with 0:18:10.480 --> 0:18:14.040 water and let it drip out as if it were 0:18:14.119 --> 0:18:17.760 giving Sydney insulin. She watched on and off for hours 0:18:18.000 --> 0:18:21.040 as the pump pushed out tiny squirts of water into 0:18:21.040 --> 0:18:24.560 a napkin. Or of course, it wasn't affecting her blood 0:18:24.560 --> 0:18:26.840 sugar at that time because it wasn't hooked up to her, 0:18:27.240 --> 0:18:29.919 but I could see the logic between behind what it 0:18:29.960 --> 0:18:33.320 was trying to do. Kate hooked Sydney up to the 0:18:33.359 --> 0:18:36.399 system on a Friday afternoon so she could keep a 0:18:36.440 --> 0:18:39.639 close eye on how it was working. It started keeping 0:18:39.640 --> 0:18:42.720 Sydney's blood sugar in range without Kate having to do 0:18:42.880 --> 0:18:46.800 much of anything. All of a sudden, you know, life changed. 0:18:47.080 --> 0:18:50.880 When you're not spending all of your time worrying about diabetes, 0:18:51.400 --> 0:18:55.080 you have all this extra time in your life. Sydney 0:18:55.119 --> 0:18:58.680 stopped worrying too. I'm a teenager. I have my phone 0:18:58.720 --> 0:19:01.720 with me Tony for seven All I have to do 0:19:02.000 --> 0:19:05.720 is open an app, putting my carbs, get my insulin, 0:19:05.760 --> 0:19:09.760 and keep going. It's just so much easier than having 0:19:09.800 --> 0:19:13.320 to go a whole another level of just pulling out 0:19:13.359 --> 0:19:15.960 my pump, doing all that cliping it back on, going 0:19:16.000 --> 0:19:18.400 back to what I was doing. Does anybody even really 0:19:18.400 --> 0:19:22.240 have to know if you're adjusting your carbs now? I mean, 0:19:22.520 --> 0:19:25.840 would anybody even realize what you're doing. No. Sometimes I'm 0:19:25.840 --> 0:19:28.159 sitting at lunch and I'm just giving insulin on my 0:19:28.200 --> 0:19:30.520 phone and my friends just think I'm on my phone 0:19:30.680 --> 0:19:41.480 looking at something just like totally normal. Yeah, just to 0:19:41.560 --> 0:19:44.520 be clear, this is a d I Y hack. No 0:19:44.800 --> 0:19:47.640 pump on the commercial market. Let's you dose insulin from 0:19:47.680 --> 0:19:52.600 your iPhone. Yet. Metronic, the world's biggest maker of insulin pumps, 0:19:52.640 --> 0:19:56.280 is watching closely. They're working on an artificial pancrease too. 0:19:57.040 --> 0:20:00.440 They have one device on the market now. The it's 0:20:00.520 --> 0:20:04.320 not as advanced. It doesn't adjust insulin for meal times 0:20:04.359 --> 0:20:07.480 like Dana system does, and it doesn't allow dos thing 0:20:07.560 --> 0:20:10.720 from an iPhone like Sydney's does. What it does do 0:20:11.000 --> 0:20:14.640 is make the tiny little adjustments that happen in between meals. 0:20:15.400 --> 0:20:19.000 That's already enough to be a big advance. The device, 0:20:19.240 --> 0:20:24.280 which sells for seven thousand dollars, is going like hotcakes. 0:20:24.320 --> 0:20:28.240 So far, more than one thousand people have one. But 0:20:28.280 --> 0:20:31.639 there's another big difference between d I Y Systems and 0:20:31.680 --> 0:20:35.600 the equipment Metronics cells. Before its products go on the market, 0:20:36.000 --> 0:20:38.879 Metronic needs to prove to the f d A that 0:20:38.960 --> 0:20:42.119 they will be safe for every one of the thousands 0:20:42.280 --> 0:20:45.520 or sometimes millions of people who buy them. I talked 0:20:45.560 --> 0:20:48.040 to Ali d and Natty, who handles R and D 0:20:48.240 --> 0:20:53.679 in Metronics Intensive Insulin Management Unit. We're regulated for a reason, 0:20:53.880 --> 0:20:56.880 to make sure that we control as many of those 0:20:57.359 --> 0:21:00.920 variables as we can and think about all the potential 0:21:00.920 --> 0:21:04.960 corner cases so that you know, any something catastrophic doesn't happen, 0:21:05.000 --> 0:21:10.320 because ultimately these patients and families are dosing insulin, and 0:21:10.520 --> 0:21:14.400 insulin can be a very, very dangerous thing. It's hard 0:21:14.440 --> 0:21:17.399 to track whether anyone was hurt while using a d 0:21:17.480 --> 0:21:20.760 I Y system. Everyone I met while reporting the story 0:21:20.880 --> 0:21:24.400 said they had never heard of anybody being seriously injured. 0:21:24.960 --> 0:21:28.760 But diabetes is a dangerous disease and the risk does exist. 0:21:30.320 --> 0:21:32.719 Some of the d I wires are working towards the 0:21:32.760 --> 0:21:36.040 same f d A seal of approval that Metronic has. 0:21:36.640 --> 0:21:40.399 Last month, an open source group called tide Pool announced 0:21:40.400 --> 0:21:43.800 that it is building an FDA regulated version of LOOP, 0:21:44.359 --> 0:21:47.000 which is the system that Sydney is using. The goal 0:21:47.200 --> 0:21:50.439 is to have an official product that's available on the 0:21:50.440 --> 0:21:54.120 iPhone app store and compatible with pumps that you can 0:21:54.119 --> 0:21:58.200 buy today. If they succeed. What was once a radical 0:21:58.320 --> 0:22:06.680 approach to diabetes will come perhaps mainstream for now, though, Kate, Sydney, 0:22:06.760 --> 0:22:08.959 and the other d I wires are making do with 0:22:09.000 --> 0:22:13.320 their homemade systems and their ranks are growing. Kate took 0:22:13.400 --> 0:22:15.720 all that time that she gained from not having to 0:22:15.800 --> 0:22:19.320 micromanaged Sydney's diabetes and invested it in the d I 0:22:19.440 --> 0:22:23.280 y community. She runs a Facebook group called looped that 0:22:23.400 --> 0:22:27.400 has almost six thousand members, and she spends hours every 0:22:27.480 --> 0:22:31.920 day helping other people set up systems like Sydneys. Kate 0:22:32.040 --> 0:22:35.880 enjoys helping others, but she's looking forward to the day 0:22:35.920 --> 0:22:39.080 when she won't have to because an FDA approved medical 0:22:39.119 --> 0:22:44.399 device will be on the market. I would love to 0:22:44.440 --> 0:22:46.600 be put out of a job one day by a 0:22:46.680 --> 0:22:50.880 company I I don't want to do this long term. 0:22:50.880 --> 0:22:53.639 I would love everyone to get a system that works 0:22:53.680 --> 0:22:57.320 for them and right out of the box, so that 0:22:57.359 --> 0:23:01.160 we don't have to keep doing this. Kate took a 0:23:01.160 --> 0:23:04.720 big risk when she plunged into building an artificial pancreas 0:23:04.760 --> 0:23:08.760 for her daughter. She didn't have medical or high tech experience. 0:23:09.440 --> 0:23:13.399 There was always the possibility that something could go terribly wrong, 0:23:14.280 --> 0:23:17.680 but the results are really hard to argue with. Sydney 0:23:17.760 --> 0:23:20.400 is in good health, and she's living her life more 0:23:20.520 --> 0:23:24.359 or less like any other well adjusted teenager. And that's 0:23:24.480 --> 0:23:29.199 been worth everything. I mean, just the fact that I 0:23:29.240 --> 0:23:33.000 can live my life normally instead of having a hundred 0:23:33.000 --> 0:23:36.280 different things to focus on, and it lowers the stress 0:23:36.280 --> 0:23:40.040 a lot. Would you ever go back to the way 0:23:40.080 --> 0:23:59.280 it was before? Oh? No, way, never. And that's it 0:23:59.400 --> 0:24:03.080 for this week's Arognosis. Thanks for listening. Do you have 0:24:03.119 --> 0:24:05.840 a story about healthcare in the US or around the world. 0:24:06.320 --> 0:24:08.919 We want to hear from you. You can email me 0:24:09.080 --> 0:24:12.000 at m Cortes at Bloomberg dot net or find me 0:24:12.040 --> 0:24:15.480 on Twitter at fay Cortes. If you were a fan 0:24:15.560 --> 0:24:17.960 of this episode, please take a moment to rate and 0:24:18.000 --> 0:24:22.639 review us. It helps new listeners find the show. This 0:24:22.760 --> 0:24:26.280 episode was produced by Liz Smith. Our story editor was 0:24:26.359 --> 0:24:30.840 Rick Shine. Thanks to Drew Armstrong. Francesco leabe is, head 0:24:30.840 --> 0:24:34.000 of Bloomberg Podcasts. We'll see you next week.