1 00:00:00,240 --> 00:00:04,720 Speaker 1: High Prognosis listeners, We're looking back at our favorite episodes 2 00:00:04,760 --> 00:00:08,280 Speaker 1: from previous seasons over the next four weeks. We start 3 00:00:08,320 --> 00:00:11,640 Speaker 1: with our very first episode ever, where a community came 4 00:00:11,640 --> 00:00:15,640 Speaker 1: together to develop a biohack that revolutionized life for diabetics. 5 00:00:16,360 --> 00:00:24,400 Speaker 1: Thanks for listening and enjoy the show. Hm hm hm. 6 00:00:28,480 --> 00:00:30,360 Speaker 1: What do you do when a piece of your body's 7 00:00:30,400 --> 00:00:34,760 Speaker 1: hardware goes haywire? If you have Type one diabetes, that 8 00:00:34,920 --> 00:00:38,440 Speaker 1: damaged hardware is your pancreas. There's no way to fix 9 00:00:38,440 --> 00:00:41,280 Speaker 1: a broken pancreas, but you can build a new one. 10 00:00:43,120 --> 00:00:51,320 Speaker 1: Welcome to Prognosis. I'm your host, Michelle fake Cortez. For 11 00:00:51,360 --> 00:00:54,600 Speaker 1: the next eight weeks, we'll be exploring science and technology 12 00:00:54,680 --> 00:00:57,800 Speaker 1: and medical research. We'll look at how the treatments of 13 00:00:57,840 --> 00:01:00,680 Speaker 1: tomorrow get into the hands of patients who need them 14 00:01:00,720 --> 00:01:03,720 Speaker 1: the most. Along the way, we'll meet people living on 15 00:01:03,760 --> 00:01:09,399 Speaker 1: the edge of innovation. There's the scientist genetically engineering frogs 16 00:01:09,400 --> 00:01:13,480 Speaker 1: in his garage, drug company researchers using newly unlocked secrets 17 00:01:13,480 --> 00:01:16,840 Speaker 1: of the body to cure deadly diseases. And we'll hear 18 00:01:16,840 --> 00:01:19,000 Speaker 1: about one man's quest in the desert to turn a 19 00:01:19,040 --> 00:01:23,480 Speaker 1: psychedelic drug into a treatment for depression. We begin our 20 00:01:23,520 --> 00:01:25,640 Speaker 1: journey with the do it yourself device that replaces one 21 00:01:25,680 --> 00:01:39,039 Speaker 1: of the body's most critical organs. One point three million 22 00:01:39,080 --> 00:01:42,720 Speaker 1: Americans have Type one diabetes. That's the most severe kind. 23 00:01:43,280 --> 00:01:45,720 Speaker 1: It develops one cells in the pancreas that make insulin 24 00:01:45,959 --> 00:01:49,920 Speaker 1: stop working. Why it happens is still a mystery. Insulin 25 00:01:50,000 --> 00:01:53,440 Speaker 1: is the hormone that converts food into energy. A healthy 26 00:01:53,440 --> 00:01:56,960 Speaker 1: pancreas is a marvel pumping out precise amounts of insulin 27 00:01:57,080 --> 00:02:00,720 Speaker 1: at just the right time. They're dozens of things that 28 00:02:00,760 --> 00:02:05,040 Speaker 1: affect how much is made, eating, drinking, exercising, sleeping, you 29 00:02:05,160 --> 00:02:07,760 Speaker 1: name it. It's a problem. If you don't make any 30 00:02:07,880 --> 00:02:09,960 Speaker 1: sugar builds up in the blood. It comes up your 31 00:02:10,040 --> 00:02:12,519 Speaker 1: organs like the kidneys in the heart and can cause 32 00:02:12,560 --> 00:02:16,320 Speaker 1: an early death. Diabetics can inject replacement insulin, but they 33 00:02:16,360 --> 00:02:18,639 Speaker 1: have to figure out how much to give and when. 34 00:02:19,400 --> 00:02:22,800 Speaker 1: Answering those two seemingly simple questions is what makes life 35 00:02:22,800 --> 00:02:26,040 Speaker 1: with diabetes miserable. You have to take on the duties 36 00:02:26,040 --> 00:02:30,080 Speaker 1: of a healthy pancreas all day, all night, three and 37 00:02:30,080 --> 00:02:32,959 Speaker 1: sixty five days of the year. There are tools to 38 00:02:33,040 --> 00:02:36,680 Speaker 1: help glucose monitors track blood sugar levels, so people can 39 00:02:36,720 --> 00:02:39,720 Speaker 1: calculate how much insulin they need, and there are pumps 40 00:02:39,720 --> 00:02:42,280 Speaker 1: to deliver the insulin, but you have to tell it 41 00:02:42,320 --> 00:02:45,600 Speaker 1: what to do. Americans spend more than eight billion dollars 42 00:02:45,639 --> 00:02:48,200 Speaker 1: a year on these devices, but no one's been able 43 00:02:48,240 --> 00:02:50,680 Speaker 1: to get them connected and working together to deliver the 44 00:02:50,720 --> 00:02:53,239 Speaker 1: right amount of insulin the way a real pancreas does 45 00:02:55,200 --> 00:02:59,000 Speaker 1: until now. This is a story about strangers coming together 46 00:02:59,080 --> 00:03:02,240 Speaker 1: from all over the world, driven by a desperate need. 47 00:03:02,760 --> 00:03:05,639 Speaker 1: They banded together on social media to take matters into 48 00:03:05,639 --> 00:03:09,160 Speaker 1: their own hands. Now, just to be clear, these folks 49 00:03:09,200 --> 00:03:12,359 Speaker 1: didn't build a mechanical version of the pancreas. What they're 50 00:03:12,400 --> 00:03:15,840 Speaker 1: actually doing is linking their insulin pumps to their glucost 51 00:03:15,840 --> 00:03:19,960 Speaker 1: monitors and getting them to work together without any human involvement. 52 00:03:20,600 --> 00:03:24,320 Speaker 1: None of this is FDA approved. Still, thousands of people 53 00:03:24,320 --> 00:03:27,519 Speaker 1: have tried it out on themselves and on their diabetic kids, 54 00:03:28,160 --> 00:03:31,440 Speaker 1: and they love it. More are signing up every day. 55 00:03:31,840 --> 00:03:43,880 Speaker 1: Here's Bloomberg's Naomi Kresky with the story. Building your own 56 00:03:43,920 --> 00:03:48,680 Speaker 1: pancreas can be pretty intimidating. There's software code to install, 57 00:03:49,000 --> 00:03:52,680 Speaker 1: and bluetooth and radio signals to sink. Among the four 58 00:03:52,840 --> 00:03:56,680 Speaker 1: electronic devices that you'll need to link together, but there 59 00:03:56,720 --> 00:03:59,840 Speaker 1: will be lots of people to help. Someone you're likely 60 00:03:59,840 --> 00:04:03,120 Speaker 1: to come across early on is a mom from outside 61 00:04:03,120 --> 00:04:06,839 Speaker 1: Toronto named Kate Farnsworth. Some people call her Saying Kate 62 00:04:07,040 --> 00:04:09,600 Speaker 1: because she spent so much time helping people build their 63 00:04:09,600 --> 00:04:15,120 Speaker 1: own diabetes technology. Kate lives in a quiet suburb about 64 00:04:15,120 --> 00:04:19,000 Speaker 1: an hour northwest of Toronto. She realized that something was 65 00:04:19,240 --> 00:04:21,960 Speaker 1: up with her daughter, Sydney more than six years ago. 66 00:04:22,640 --> 00:04:25,880 Speaker 1: Sydney had started drinking a lot of water and eating 67 00:04:25,960 --> 00:04:30,599 Speaker 1: a lot more than usual. I used to say she 68 00:04:30,720 --> 00:04:32,880 Speaker 1: was eating like a teenage boy, but she was an 69 00:04:32,880 --> 00:04:35,800 Speaker 1: eight year old girl. We used to have to pack 70 00:04:35,839 --> 00:04:40,479 Speaker 1: an extra snack after school and leaders of extra water, 71 00:04:40,560 --> 00:04:43,599 Speaker 1: and she'd cry when she ran out of water. But 72 00:04:43,760 --> 00:04:46,920 Speaker 1: even with all that extra eating, Sydney was losing weight. 73 00:04:47,560 --> 00:04:52,200 Speaker 1: Kate googled her symptoms and diabetes popped up. So I 74 00:04:52,279 --> 00:04:56,080 Speaker 1: took her to the family doctor, and the family doctor said, well, 75 00:04:56,080 --> 00:04:58,560 Speaker 1: that's an easy test. We can just poke her finger 76 00:04:58,680 --> 00:05:01,600 Speaker 1: and see what's going on. Don't worry about it. And 77 00:05:01,640 --> 00:05:04,720 Speaker 1: the nurse poked her finger and she turned to the 78 00:05:04,720 --> 00:05:08,080 Speaker 1: other nurse and she said it's not working. It's not 79 00:05:08,240 --> 00:05:11,440 Speaker 1: It doesn't say a number, it just says high. And 80 00:05:11,520 --> 00:05:14,520 Speaker 1: the nurse said that's because her blood sugar is too 81 00:05:14,600 --> 00:05:17,240 Speaker 1: high for the meter to read. And that was our 82 00:05:17,800 --> 00:05:23,080 Speaker 1: introduction to diabetes. Sydney is now fifteen years old. She 83 00:05:23,200 --> 00:05:25,800 Speaker 1: still remembers how tough things were when she first got 84 00:05:25,839 --> 00:05:32,200 Speaker 1: the diagnosis. I was terrified because that's like I was eight. 85 00:05:32,279 --> 00:05:35,800 Speaker 1: I didn't want anything like this happening, and it was 86 00:05:35,880 --> 00:05:41,120 Speaker 1: just there was life changing. Yeah, people with type one 87 00:05:41,200 --> 00:05:45,440 Speaker 1: diabetes need to take replacement insulin, but messing at the 88 00:05:45,480 --> 00:05:49,760 Speaker 1: dosage can have catastrophic results, including going into a coma 89 00:05:49,920 --> 00:05:53,120 Speaker 1: or even dying, and figuring out how much to take 90 00:05:53,279 --> 00:05:56,919 Speaker 1: is really complicated. There are a ton of things that 91 00:05:57,000 --> 00:06:02,920 Speaker 1: affect blood sugar. So sleep can affect blood sugar, anxiety, adrenaline, 92 00:06:03,400 --> 00:06:11,080 Speaker 1: food stress, um, exercise, but just basically everything affects blood sugar. 93 00:06:11,279 --> 00:06:15,400 Speaker 1: Roller coasters make her blood sugar drop, walking to school 94 00:06:15,480 --> 00:06:19,000 Speaker 1: makes her blood sugar drop. I've heard people say that 95 00:06:20,040 --> 00:06:23,040 Speaker 1: boys walking by make their daughter's blood sugar go up 96 00:06:23,040 --> 00:06:26,720 Speaker 1: as well. I have not noticed that myself, but I'm 97 00:06:26,760 --> 00:06:30,200 Speaker 1: not paying that close attention. So Kate and her husband, Dave. 98 00:06:30,360 --> 00:06:33,159 Speaker 1: We're getting up several times a night to check Sydney's 99 00:06:33,160 --> 00:06:36,440 Speaker 1: blood sugar. This is something that I heard a lot 100 00:06:36,560 --> 00:06:40,280 Speaker 1: from parents of kids with diabetes. When your kids are asleep, 101 00:06:40,400 --> 00:06:43,400 Speaker 1: it's hard for them to know when blood sugar levels 102 00:06:43,440 --> 00:06:46,679 Speaker 1: are dropping too low. There are these little devices called 103 00:06:46,680 --> 00:06:51,080 Speaker 1: continuous glucose monitors or cgms for short, that sound and 104 00:06:51,160 --> 00:06:53,720 Speaker 1: alarm when their readings are dipping too low. But they 105 00:06:53,760 --> 00:06:56,520 Speaker 1: can be really hard to hear, and until recently, you 106 00:06:56,560 --> 00:06:59,200 Speaker 1: couldn't tune into them from even a few rooms away. 107 00:06:59,680 --> 00:07:05,840 Speaker 1: They're also expensive. At first, Sydney didn't even have one, 108 00:07:07,040 --> 00:07:10,520 Speaker 1: so Davi would check Sydney's blood sugar at midnight before 109 00:07:11,200 --> 00:07:14,520 Speaker 1: he went to bed. Kate would set her alarm for 110 00:07:14,600 --> 00:07:18,160 Speaker 1: three am, when she set another alarm for six am. 111 00:07:18,240 --> 00:07:21,600 Speaker 1: They were so tired all the time. Kate thought there 112 00:07:21,640 --> 00:07:28,280 Speaker 1: had to be a better way. One day, I was googling, um, 113 00:07:28,320 --> 00:07:32,760 Speaker 1: researching whatever you want to call it, all things diabetes, 114 00:07:32,800 --> 00:07:35,480 Speaker 1: and I came across a blog and it had a 115 00:07:35,520 --> 00:07:39,080 Speaker 1: little girl who had a backpack with a cell phone 116 00:07:39,280 --> 00:07:43,320 Speaker 1: connected to this receiver Sydney wears, and it was broadcasting 117 00:07:43,360 --> 00:07:46,960 Speaker 1: their blood sugars to their parents, and I thought, that's 118 00:07:47,000 --> 00:07:48,960 Speaker 1: that's what I need. I need to be able to 119 00:07:48,960 --> 00:07:51,840 Speaker 1: see her blood sugar when she's not with me. Kate 120 00:07:51,960 --> 00:07:54,600 Speaker 1: found a group of parents who had managed to pull 121 00:07:54,720 --> 00:07:59,800 Speaker 1: data from signs onto their smartphones and watches. This group 122 00:07:59,880 --> 00:08:02,280 Speaker 1: is called Knight Scout, and it came up with the 123 00:08:02,400 --> 00:08:06,600 Speaker 1: first big d I Y advance. It helped parents track 124 00:08:07,080 --> 00:08:10,040 Speaker 1: how their kids were doing at school, at night, or 125 00:08:10,080 --> 00:08:15,120 Speaker 1: any other times when they weren't together. Up until that time, 126 00:08:15,680 --> 00:08:20,800 Speaker 1: you had to be within fifteen feet of the continuous 127 00:08:20,800 --> 00:08:26,480 Speaker 1: glucose monitor receiver that you received from uh dex commer Metronic. 128 00:08:26,960 --> 00:08:29,920 Speaker 1: This allowed you to be anywhere in the world and 129 00:08:30,080 --> 00:08:34,280 Speaker 1: still see your blood glucose values. That's Weston Nordgren, a 130 00:08:34,400 --> 00:08:38,400 Speaker 1: dad from Bakersfield, California. He helped start Night Scout in 131 00:08:38,440 --> 00:08:43,720 Speaker 1: a The group operates on the principle of pay it forward. 132 00:08:44,400 --> 00:08:46,800 Speaker 1: Every single family that set up the d I Y 133 00:08:46,880 --> 00:08:50,880 Speaker 1: system was supposed to help someone else figure it out too, 134 00:08:51,240 --> 00:08:54,560 Speaker 1: So they started with five families, and what happened after 135 00:08:54,640 --> 00:09:01,000 Speaker 1: that defied everyone's expectations. Within six weeks of creating that group, 136 00:09:01,720 --> 00:09:09,040 Speaker 1: there were one thousand, seven hundred families. By September, there 137 00:09:09,040 --> 00:09:13,920 Speaker 1: were seven thousand families. By December there were ten thousand families. 138 00:09:14,640 --> 00:09:19,880 Speaker 1: So it just exploded. So now parents could watch their 139 00:09:19,960 --> 00:09:23,439 Speaker 1: kids blood glucose. That was a big deal, but some 140 00:09:23,480 --> 00:09:26,839 Speaker 1: people were already thinking of taking it further. The next 141 00:09:26,840 --> 00:09:30,479 Speaker 1: advance would have been impossible if not for a blunder 142 00:09:30,480 --> 00:09:35,240 Speaker 1: by Metronic, the world's biggest medical device maker, left a 143 00:09:35,280 --> 00:09:39,079 Speaker 1: security gap and some of its insulin pumps the wireless 144 00:09:39,200 --> 00:09:43,160 Speaker 1: radio frequency link was open to hackers. Ben West, a 145 00:09:43,200 --> 00:09:47,120 Speaker 1: programmer and diabetes patient in California, found the open back 146 00:09:47,160 --> 00:09:50,440 Speaker 1: door and walked right through. I actually don't describe it 147 00:09:50,480 --> 00:09:53,959 Speaker 1: as a backdoor. Um, it's more like the front door 148 00:09:54,120 --> 00:09:57,600 Speaker 1: wasn't put on, it wasn't locked, or it wasn't clearly no, 149 00:09:57,800 --> 00:10:00,160 Speaker 1: Like there's just no door. There's just there's just no door. 150 00:10:02,000 --> 00:10:05,680 Speaker 1: What door. That explains to me that there are two 151 00:10:05,720 --> 00:10:08,600 Speaker 1: ways to protect against a hack. You can make a 152 00:10:08,640 --> 00:10:12,559 Speaker 1: strong defense or you can just hide it. Try to 153 00:10:12,640 --> 00:10:16,120 Speaker 1: keep the soft and vulnerable spot a secret so it's safe. 154 00:10:16,720 --> 00:10:19,800 Speaker 1: And that's the choice the Metronic made when they designed 155 00:10:19,840 --> 00:10:23,000 Speaker 1: this device. We're just gonna leave it so that it's 156 00:10:23,040 --> 00:10:25,120 Speaker 1: easy for us to test and get out the door 157 00:10:25,400 --> 00:10:28,760 Speaker 1: and ship very quickly. We'll keep how it works a secret, 158 00:10:28,800 --> 00:10:31,720 Speaker 1: and so we're claiming that no one will know how 159 00:10:31,720 --> 00:10:33,600 Speaker 1: it works, and since no one knows how it works, 160 00:10:33,600 --> 00:10:35,960 Speaker 1: no one will ever attack it. That that's basically the 161 00:10:36,000 --> 00:10:39,800 Speaker 1: tactic piptok. Now, it turns out that you know, I 162 00:10:39,880 --> 00:10:42,240 Speaker 1: came along and I said, well, it's on my body, 163 00:10:42,800 --> 00:10:45,200 Speaker 1: and I actually need to know how it works in 164 00:10:45,320 --> 00:10:47,280 Speaker 1: order to make sure that it's not doing the wrong 165 00:10:47,320 --> 00:10:50,760 Speaker 1: thing to my body. Ben started the project in winter 166 00:10:51,040 --> 00:10:53,880 Speaker 1: of two thousand nine. He was already working at that 167 00:10:53,920 --> 00:10:56,800 Speaker 1: point as a software engineer, and then he got a 168 00:10:56,880 --> 00:11:00,240 Speaker 1: job at a cloud computing startup. He didn't have whole 169 00:11:00,320 --> 00:11:03,200 Speaker 1: lot of free time, so he would take his metronic 170 00:11:03,280 --> 00:11:06,240 Speaker 1: pump home with him to his family over Christmas and 171 00:11:06,320 --> 00:11:09,520 Speaker 1: New Years, and we would spend the you know, almost 172 00:11:09,559 --> 00:11:12,480 Speaker 1: the entire holiday just working on this thing. You know. 173 00:11:12,480 --> 00:11:15,280 Speaker 1: We would take poster paper and start trying to figure 174 00:11:15,280 --> 00:11:18,800 Speaker 1: out individual bits and bites and the meaning of individual codes, 175 00:11:19,360 --> 00:11:21,400 Speaker 1: and we would try to dissect, you know, what are 176 00:11:21,400 --> 00:11:24,880 Speaker 1: these time stamps and how are they encoding times and dates? 177 00:11:24,960 --> 00:11:29,280 Speaker 1: And we would kind of um pick these different topical 178 00:11:29,320 --> 00:11:32,600 Speaker 1: areas and really intensely attack it over the holiday period, 179 00:11:32,920 --> 00:11:36,880 Speaker 1: and those were usually very very productive sessions. What what 180 00:11:36,920 --> 00:11:39,800 Speaker 1: we would do is kind of form necklaces um out 181 00:11:39,800 --> 00:11:42,640 Speaker 1: of these things, so that you know, the glucoast meter 182 00:11:42,800 --> 00:11:45,800 Speaker 1: plugs into a USB cable, and the USB cable goes 183 00:11:45,840 --> 00:11:49,679 Speaker 1: into a computer like a gumsticks or a Raspberry Pie, 184 00:11:50,040 --> 00:11:52,599 Speaker 1: and then that goes back into another USB cable that 185 00:11:52,640 --> 00:11:54,920 Speaker 1: goes into another thing. So pretty soon you've got this 186 00:11:55,000 --> 00:11:57,560 Speaker 1: thing that kind of twists itself around and loops around. 187 00:11:57,800 --> 00:12:01,040 Speaker 1: And we would kind of wear those around so that 188 00:12:01,720 --> 00:12:05,079 Speaker 1: so that we could continue working while moving around the house, 189 00:12:05,160 --> 00:12:10,160 Speaker 1: I suppose. So after about five years of work, Ben 190 00:12:10,200 --> 00:12:14,920 Speaker 1: managed to reverse engineer the pumps communications code. That means 191 00:12:15,080 --> 00:12:17,319 Speaker 1: he figured out how to tell the device what to do. 192 00:12:18,760 --> 00:12:21,800 Speaker 1: Now that d I Wires had two pieces of the puzzle, 193 00:12:22,000 --> 00:12:25,240 Speaker 1: they would need to make an artificial pancreasis. They had 194 00:12:25,360 --> 00:12:28,480 Speaker 1: night Scout, which was pulling the blood glucos data off 195 00:12:28,480 --> 00:12:32,240 Speaker 1: glucose monitors for Sydney and Kate. That meant either of 196 00:12:32,280 --> 00:12:34,880 Speaker 1: them could watch Sydney's blood sugar from a smart watch 197 00:12:35,040 --> 00:12:37,559 Speaker 1: while Sydney was in school or if she was asleep. 198 00:12:38,480 --> 00:12:42,200 Speaker 1: Now Ben had hacked the pump. The final piece of 199 00:12:42,240 --> 00:12:46,120 Speaker 1: the puzzle would be an algorithm. That's a script that 200 00:12:46,200 --> 00:12:50,440 Speaker 1: shows a computer how to do a repetitive but complicated 201 00:12:50,480 --> 00:13:00,000 Speaker 1: task like calculating insulin doses. Entered Dana Lewis. She lived 202 00:13:00,000 --> 00:13:03,360 Speaker 1: since Seattle, and she has diabetes. So if I sat 203 00:13:03,400 --> 00:13:05,520 Speaker 1: down to have lunch, I would be looking at a 204 00:13:05,559 --> 00:13:07,400 Speaker 1: plate of food and I would have to do math 205 00:13:07,440 --> 00:13:09,960 Speaker 1: to figure out how many grams of carbohydrate around the food. 206 00:13:10,400 --> 00:13:12,400 Speaker 1: I'd also have to look at what my current blood 207 00:13:12,400 --> 00:13:14,800 Speaker 1: glucose is, and if I had a c GM, I'd 208 00:13:14,840 --> 00:13:17,120 Speaker 1: be looking at the past couple of hours trying to 209 00:13:17,200 --> 00:13:19,400 Speaker 1: visually predict in my head what is the trend of 210 00:13:19,400 --> 00:13:21,839 Speaker 1: my blood suger what's going to happen. I also had 211 00:13:21,840 --> 00:13:24,320 Speaker 1: to look at my pump and get the information about 212 00:13:24,360 --> 00:13:26,840 Speaker 1: how much insulin I already had active in my body, 213 00:13:27,400 --> 00:13:30,480 Speaker 1: and so I had to combine the current glucose kind 214 00:13:30,480 --> 00:13:32,880 Speaker 1: of what has happened in the past, this insulin amount, 215 00:13:33,160 --> 00:13:35,320 Speaker 1: predict what I was going to happen, add in the 216 00:13:35,360 --> 00:13:37,439 Speaker 1: calculation of how much food and how that was going 217 00:13:37,480 --> 00:13:40,320 Speaker 1: to impact my body, and decide how much insulin do 218 00:13:40,360 --> 00:13:42,760 Speaker 1: I need? And not only how much insulin do I need, 219 00:13:42,800 --> 00:13:45,600 Speaker 1: but how should I time it? Dana and her partner, 220 00:13:45,679 --> 00:13:49,160 Speaker 1: Scott Liebrand, decided that it would be a lot simpler 221 00:13:49,200 --> 00:13:52,600 Speaker 1: to let the computer do some of that calculating, so 222 00:13:52,960 --> 00:13:56,559 Speaker 1: they wrote an algorithm. At first, it would only spit 223 00:13:56,559 --> 00:14:00,679 Speaker 1: out recommendations. Then they took their project to a conference 224 00:14:01,080 --> 00:14:05,319 Speaker 1: and they met Ben. It was June, and we stood 225 00:14:05,320 --> 00:14:07,320 Speaker 1: beside him kind of demonstrating what we've been working on, 226 00:14:07,360 --> 00:14:09,560 Speaker 1: and he was demonstrating the fact that he could read 227 00:14:09,600 --> 00:14:12,840 Speaker 1: and write to this metronic pump. And it actually wasn't 228 00:14:12,880 --> 00:14:15,880 Speaker 1: until a few weeks or months later that another light 229 00:14:15,880 --> 00:14:18,160 Speaker 1: bulb went off and we went, hey, we've got this 230 00:14:18,200 --> 00:14:21,640 Speaker 1: algorithm that takes data and predicts into the future. What 231 00:14:21,680 --> 00:14:25,120 Speaker 1: should happen if we combined it with his code to 232 00:14:25,320 --> 00:14:28,240 Speaker 1: talk between the devices. Instead of telling the human what 233 00:14:28,320 --> 00:14:31,080 Speaker 1: to do, we could actually write directly to the insulin 234 00:14:31,120 --> 00:14:33,760 Speaker 1: pump and tell it to give more or less insulin. 235 00:14:34,320 --> 00:14:36,760 Speaker 1: So then they had to figure out how to close 236 00:14:36,800 --> 00:14:40,160 Speaker 1: the loop. They didn't start out knowing exactly what they 237 00:14:40,160 --> 00:14:43,840 Speaker 1: would build, but they just started working on the problem 238 00:14:44,120 --> 00:14:48,120 Speaker 1: step by step, trading the ideas back and forth. So 239 00:14:48,240 --> 00:14:50,480 Speaker 1: I live in Seattle. Scott, who was then my boyfriend, 240 00:14:50,560 --> 00:14:53,200 Speaker 1: lived twenty miles away in Everett, Washington, and Ben was 241 00:14:53,200 --> 00:14:56,280 Speaker 1: based out of San Francisco, and so we would collaborate 242 00:14:56,320 --> 00:14:58,080 Speaker 1: in a variety of ways. We would use a chat 243 00:14:58,120 --> 00:15:00,480 Speaker 1: channel called getter, which is connected to at hub, where 244 00:15:00,480 --> 00:15:04,400 Speaker 1: we would get on and start talking. We used Twitter, UM. 245 00:15:04,440 --> 00:15:06,280 Speaker 1: We also just used phone calls where we would get 246 00:15:06,280 --> 00:15:08,800 Speaker 1: on speaker phone and be programming and using the chat 247 00:15:08,880 --> 00:15:10,920 Speaker 1: channel and also talking by phone. There was also times 248 00:15:10,920 --> 00:15:12,760 Speaker 1: where Scott would need to go down to San Francisco 249 00:15:12,800 --> 00:15:14,640 Speaker 1: for work, so he and Ben would meet up. Sometimes 250 00:15:14,640 --> 00:15:16,680 Speaker 1: I would be in San Francisco. We beat up in person, 251 00:15:17,120 --> 00:15:19,800 Speaker 1: you know, on nights and weekends, um, and really just 252 00:15:20,040 --> 00:15:22,600 Speaker 1: kind of plucking away at Oh, we found a problem, 253 00:15:22,640 --> 00:15:24,640 Speaker 1: let's resolve it. Okay, we found the next problem in 254 00:15:24,680 --> 00:15:27,320 Speaker 1: the next obstacle, let's figure out how to tackle it. 255 00:15:27,680 --> 00:15:31,080 Speaker 1: In December, the group finally felt like they had surmounted 256 00:15:31,160 --> 00:15:35,040 Speaker 1: all of the obstacles they enough finally felt confident enough 257 00:15:35,120 --> 00:15:39,000 Speaker 1: to become the first human tester for her new artificial pancreas. 258 00:15:39,600 --> 00:15:41,960 Speaker 1: Originally my plan was just to test it for a 259 00:15:41,960 --> 00:15:43,920 Speaker 1: couple of hours, but I was like, you know what, 260 00:15:44,360 --> 00:15:46,280 Speaker 1: I really I want to go to sleep and I 261 00:15:46,280 --> 00:15:48,600 Speaker 1: want to go to sleep with this thing working. And 262 00:15:48,680 --> 00:15:51,320 Speaker 1: so we set up all of our backup alarms, and 263 00:15:51,440 --> 00:15:53,800 Speaker 1: I went off and went to sleep with the system. 264 00:15:53,840 --> 00:15:55,920 Speaker 1: And I woke up the next morning and I felt 265 00:15:56,280 --> 00:15:58,840 Speaker 1: better than I ever had before, because I woke up 266 00:15:58,840 --> 00:16:01,480 Speaker 1: with my blood sugar in perfect range where I wanted 267 00:16:01,480 --> 00:16:04,400 Speaker 1: to be. I hadn't been low overnight, my bletcher hadn't 268 00:16:04,440 --> 00:16:06,560 Speaker 1: been high overnight. I wasn't interrupted in my sleep. I 269 00:16:06,600 --> 00:16:08,160 Speaker 1: didn't have to drink a juice box, I didn't have 270 00:16:08,160 --> 00:16:10,440 Speaker 1: to press a button on my pump. I got ten 271 00:16:10,800 --> 00:16:14,720 Speaker 1: uninterrupted hours of sleep, and it was glorious. The d 272 00:16:14,840 --> 00:16:18,480 Speaker 1: i Y community was all about open source, or sharing code, 273 00:16:19,040 --> 00:16:21,960 Speaker 1: so Scott, Dana, and Ben wanted to share what they 274 00:16:22,120 --> 00:16:24,840 Speaker 1: learned so that others could also feel and sleep better. 275 00:16:25,520 --> 00:16:28,400 Speaker 1: But it wasn't just up to them. There's also the 276 00:16:28,440 --> 00:16:31,360 Speaker 1: f d A, or the Food and Drug Administration, which 277 00:16:31,360 --> 00:16:34,680 Speaker 1: regulates devices in the US. They were worried that the 278 00:16:34,720 --> 00:16:37,400 Speaker 1: FDA would come down on them for sharing something they'd 279 00:16:37,400 --> 00:16:41,040 Speaker 1: cooked up at home. In the end, after talking to 280 00:16:41,040 --> 00:16:43,680 Speaker 1: the f d A weighing the pros and cons, they 281 00:16:43,680 --> 00:16:47,320 Speaker 1: decided to post their work online, with one important caveat. 282 00:16:47,880 --> 00:16:50,280 Speaker 1: The people who wanted to use it would have to 283 00:16:50,320 --> 00:16:53,920 Speaker 1: build it themselves first. Only if you tried it out 284 00:16:54,760 --> 00:16:58,440 Speaker 1: then more and more. Kay was watching too. She was 285 00:16:58,480 --> 00:17:03,200 Speaker 1: intrigued but also intimidated. It seemed very complicated to build. 286 00:17:03,960 --> 00:17:06,880 Speaker 1: But then another member of the community designed a more 287 00:17:07,000 --> 00:17:11,480 Speaker 1: user friendly version for the iPhone called loop In. Kate 288 00:17:11,560 --> 00:17:14,679 Speaker 1: saw it in action. A friend's little boy was running 289 00:17:14,720 --> 00:17:19,199 Speaker 1: around having his blood sugar automatically adjusted by the system. 290 00:17:19,200 --> 00:17:22,120 Speaker 1: She started looking for the parts she needed. That same day, 291 00:17:22,560 --> 00:17:27,280 Speaker 1: Medtronic had closed Ben's open door on its newer pumps, 292 00:17:27,800 --> 00:17:30,320 Speaker 1: so Kate had to get a hold of an older model. 293 00:17:30,840 --> 00:17:34,800 Speaker 1: Someone gave her one. Then she ordered a tiny Bluetooth 294 00:17:34,800 --> 00:17:38,919 Speaker 1: equipped computer which enabled the pieces of the Loop system, 295 00:17:38,960 --> 00:17:42,520 Speaker 1: so the insulin pump, the glucose monitor, the iPhone app 296 00:17:42,560 --> 00:17:45,720 Speaker 1: with the algorithm to talk to each other another d 297 00:17:45,880 --> 00:17:49,520 Speaker 1: I wire. A dad from Minnesota named Peach Farm had 298 00:17:49,560 --> 00:17:52,400 Speaker 1: designed the device for his daughter and named it after her, 299 00:17:52,760 --> 00:18:09,800 Speaker 1: calling it the Riley Link. Kate got to work. There 300 00:18:09,840 --> 00:18:13,280 Speaker 1: weren't a lot of instructions to follow, but just enough. 301 00:18:14,080 --> 00:18:17,280 Speaker 1: I built the app on her phone and then I 302 00:18:17,359 --> 00:18:21,960 Speaker 1: set up um the spare pump and the Riley link 303 00:18:22,200 --> 00:18:26,280 Speaker 1: and uh the iPhone and let it run, but not 304 00:18:26,359 --> 00:18:29,600 Speaker 1: connected to Sydney. I just filled the insulin pump with 305 00:18:29,680 --> 00:18:33,200 Speaker 1: water and let it drip out as if it were 306 00:18:33,280 --> 00:18:36,960 Speaker 1: giving Sydney insulin. She watched on and off for hours 307 00:18:37,200 --> 00:18:40,200 Speaker 1: as the pump pushed out tiny squirts of water into 308 00:18:40,240 --> 00:18:43,720 Speaker 1: a napkin. Or Of course, it wasn't affecting her blood 309 00:18:43,720 --> 00:18:46,040 Speaker 1: sugar at that time because it wasn't hooked up to her, 310 00:18:46,440 --> 00:18:49,080 Speaker 1: but I could see the logic between behind what it 311 00:18:49,160 --> 00:18:52,480 Speaker 1: was trying to do. Kate hooked Sydney up to the 312 00:18:52,520 --> 00:18:55,560 Speaker 1: system on a Friday afternoon so she could keep a 313 00:18:55,600 --> 00:18:58,800 Speaker 1: close eye on how it was working. It started keeping 314 00:18:58,840 --> 00:19:02,240 Speaker 1: Sydney's blood sugar range without Kate having to do much 315 00:19:02,240 --> 00:19:05,960 Speaker 1: of anything. All of a sudden. You know, life changed. 316 00:19:06,240 --> 00:19:10,080 Speaker 1: When you're not spending all of your time worrying about diabetes, 317 00:19:10,600 --> 00:19:14,240 Speaker 1: you have all this extra time in your life. Sydney 318 00:19:14,320 --> 00:19:17,879 Speaker 1: stopped worrying too. I'm a teenager. I have my phone 319 00:19:17,880 --> 00:19:22,560 Speaker 1: with me. All I have to do is open an app, 320 00:19:22,960 --> 00:19:27,000 Speaker 1: putting my carbs, get my insulin, and keep going. It's 321 00:19:27,040 --> 00:19:30,320 Speaker 1: just so much easier than having to go a whole 322 00:19:30,320 --> 00:19:33,439 Speaker 1: Another level of just pulling out my pump, doing all that, 323 00:19:33,560 --> 00:19:36,080 Speaker 1: clipping it back on, going back to what I was doing. 324 00:19:36,400 --> 00:19:39,359 Speaker 1: Does anybody even really have to know if you're adjusting 325 00:19:40,119 --> 00:19:43,080 Speaker 1: your carbs now? I mean, would anybody even realize what 326 00:19:43,119 --> 00:19:46,240 Speaker 1: you're doing? No. Sometimes I'm sitting at lunch and I'm 327 00:19:46,280 --> 00:19:48,399 Speaker 1: just giving insult on my phone and my friends just 328 00:19:48,560 --> 00:19:51,959 Speaker 1: think I'm on my phone looking at something just like 329 00:19:52,119 --> 00:20:02,040 Speaker 1: totally normal. Yeah, just to be clear, this is a 330 00:20:02,160 --> 00:20:05,399 Speaker 1: d i Y hack. No pump on the commercial market 331 00:20:05,520 --> 00:20:09,879 Speaker 1: lets you dose insulin from your iPhone. Yet Metronic, the 332 00:20:09,920 --> 00:20:13,480 Speaker 1: world's biggest maker of insulin pumps, is watching closely. They're 333 00:20:13,480 --> 00:20:17,280 Speaker 1: working on an artificial pancrease too. They have one device 334 00:20:17,359 --> 00:20:21,359 Speaker 1: on the market now, but it's not as advanced. It 335 00:20:21,440 --> 00:20:24,800 Speaker 1: doesn't adjust insulin for meal times like Dana System does, 336 00:20:25,520 --> 00:20:28,760 Speaker 1: and it doesn't allow dosing from an iPhone like Sydney's does. 337 00:20:29,160 --> 00:20:32,320 Speaker 1: What it does do is make the tiny little adjustments 338 00:20:32,359 --> 00:20:36,159 Speaker 1: that happen in between meals. That's already enough to be 339 00:20:36,280 --> 00:20:41,040 Speaker 1: a big advance. The device, which sells for seven thousand dollars, 340 00:20:41,680 --> 00:20:45,760 Speaker 1: is going like hotcakes. So far more than one thousand 341 00:20:45,760 --> 00:20:49,680 Speaker 1: people have one. But there's another big difference between d 342 00:20:49,720 --> 00:20:53,440 Speaker 1: I Y systems and the equipment Metronics cells. Before its 343 00:20:53,440 --> 00:20:56,840 Speaker 1: products go on the market, Metronic needs to prove to 344 00:20:56,880 --> 00:20:59,440 Speaker 1: the f d A that they will be safe for 345 00:20:59,520 --> 00:21:03,160 Speaker 1: every one of the thousands or sometimes millions of people 346 00:21:03,200 --> 00:21:05,760 Speaker 1: who buy them. I talked to Ali d and Natty, 347 00:21:06,080 --> 00:21:10,000 Speaker 1: who handles R and D in Metronics. Intensive Insulin Management 348 00:21:10,080 --> 00:21:14,119 Speaker 1: Unit were regulated for a reason, to make sure that 349 00:21:14,160 --> 00:21:17,960 Speaker 1: we control as many of those variables as we can 350 00:21:18,080 --> 00:21:21,440 Speaker 1: and think about all the potential corner cases so that 351 00:21:21,480 --> 00:21:25,919 Speaker 1: you know, any something catastrophic doesn't happen, because ultimately, these 352 00:21:26,359 --> 00:21:30,359 Speaker 1: patients and families are dosing insulin, and insulin can be 353 00:21:30,400 --> 00:21:34,639 Speaker 1: a very very dangerous thing. It's hard to track whether 354 00:21:34,720 --> 00:21:37,480 Speaker 1: anyone was hurt while using a d I Y system. 355 00:21:37,880 --> 00:21:40,680 Speaker 1: Everyone I met while reporting the story said they had 356 00:21:40,800 --> 00:21:45,040 Speaker 1: never heard of anybody being seriously injured. But diabetes is 357 00:21:45,040 --> 00:21:49,760 Speaker 1: a dangerous disease and the risk does exist. Some of 358 00:21:49,760 --> 00:21:52,480 Speaker 1: the d I wires are working towards the same f 359 00:21:52,640 --> 00:21:56,320 Speaker 1: d A seal of approval that Metronic has. Last month, 360 00:21:56,760 --> 00:22:00,199 Speaker 1: an open source group called tide Pool announced that is 361 00:22:00,200 --> 00:22:04,000 Speaker 1: building an FDA regulated version of Loop, which is the 362 00:22:04,040 --> 00:22:06,960 Speaker 1: system that Sydney is using. The goal is to have 363 00:22:07,040 --> 00:22:10,680 Speaker 1: an official product that's available on the iPhone app store 364 00:22:11,160 --> 00:22:14,760 Speaker 1: and compatible with pumps that you can buy today. If 365 00:22:14,760 --> 00:22:18,760 Speaker 1: they succeed, what was once a radical approach to diabetes 366 00:22:18,920 --> 00:22:26,000 Speaker 1: will become perhaps mainstream. For now, though. Kate, Sydney, and 367 00:22:26,080 --> 00:22:28,360 Speaker 1: the other d I wires are making do with their 368 00:22:28,359 --> 00:22:32,800 Speaker 1: homemade systems, and their ranks are growing. Kate took all 369 00:22:32,800 --> 00:22:35,720 Speaker 1: that time that she gained from not having to micromanage 370 00:22:35,720 --> 00:22:39,399 Speaker 1: Sydney's diabetes and invested it in the d I y community. 371 00:22:39,880 --> 00:22:43,360 Speaker 1: She runs a Facebook group called looped that has almost 372 00:22:43,400 --> 00:22:47,400 Speaker 1: six thousand members, and she spends hours every day helping 373 00:22:47,440 --> 00:22:52,480 Speaker 1: other people set up systems. Like Sydneys. Kate enjoys helping others, 374 00:22:53,119 --> 00:22:55,720 Speaker 1: but she's looking forward to the day when she won't 375 00:22:55,760 --> 00:22:58,919 Speaker 1: have to because an FDA approved medical device will be 376 00:22:58,960 --> 00:23:04,160 Speaker 1: on the market. I would love to be put out 377 00:23:04,160 --> 00:23:08,080 Speaker 1: of a job one day by a company I I 378 00:23:08,119 --> 00:23:10,600 Speaker 1: don't want to do this long term. I would love 379 00:23:10,680 --> 00:23:13,960 Speaker 1: everyone to get a system that works for them and 380 00:23:14,640 --> 00:23:17,320 Speaker 1: right out of the box, so that we don't have 381 00:23:17,440 --> 00:23:21,440 Speaker 1: to keep doing this. Kate took a big risk when 382 00:23:21,480 --> 00:23:24,520 Speaker 1: she plunged into building an artificial pancreas for her daughter. 383 00:23:25,200 --> 00:23:28,919 Speaker 1: She didn't have medical or high tech experience. There was 384 00:23:28,960 --> 00:23:33,520 Speaker 1: always the possibility that something could go terribly wrong, but 385 00:23:33,600 --> 00:23:37,000 Speaker 1: the results are really hard to argue with. Sydney is 386 00:23:37,040 --> 00:23:39,760 Speaker 1: in good health and she's living her life more or 387 00:23:39,840 --> 00:23:43,800 Speaker 1: less like any other well adjusted teenager, and that's been 388 00:23:43,880 --> 00:23:48,640 Speaker 1: worth everything. I mean, just the fact that I can 389 00:23:48,960 --> 00:23:52,480 Speaker 1: live my life normally instead of having a hundred different 390 00:23:52,520 --> 00:23:55,800 Speaker 1: things to focus on, and it lowers the stress a lot. 391 00:23:56,320 --> 00:24:01,040 Speaker 1: Would you ever go back to the way it was before? Oh? 392 00:24:01,119 --> 00:24:19,760 Speaker 1: No way, never. And that's it for this week's prognosis. 393 00:24:20,040 --> 00:24:23,320 Speaker 1: Thanks for listening. Do you have a story about healthcare 394 00:24:23,320 --> 00:24:25,919 Speaker 1: in the US or around the world. We want to 395 00:24:25,920 --> 00:24:29,120 Speaker 1: hear from you. You can email me at m Cortes 396 00:24:29,200 --> 00:24:32,200 Speaker 1: at Bloomberg dot net or find me on Twitter at 397 00:24:32,200 --> 00:24:35,560 Speaker 1: fake Cortes. If you were a fan of this episode, 398 00:24:35,760 --> 00:24:38,159 Speaker 1: please take a moment to rate and review us. It 399 00:24:38,240 --> 00:24:43,000 Speaker 1: helps new listeners find the show. This episode was produced 400 00:24:43,000 --> 00:24:46,920 Speaker 1: by Liz Smith. Our story editor was Rick Shine. Thanks 401 00:24:46,960 --> 00:24:51,159 Speaker 1: to Drew Armstrong. Francesco Levie is head of Bloomberg Podcasts. 402 00:24:51,600 --> 00:24:52,560 Speaker 1: We'll see you next week.