1 00:00:00,200 --> 00:00:10,520 Speaker 1: Hm hm hm. What do you do when a piece 2 00:00:10,560 --> 00:00:14,480 Speaker 1: of your body's hardware goes haywire? If you have Type 3 00:00:14,520 --> 00:00:18,720 Speaker 1: one diabetes, that damaged hardware is your pancreas. There's no 4 00:00:18,760 --> 00:00:21,680 Speaker 1: way to fix a broken pancreas, but you can build 5 00:00:21,680 --> 00:00:26,960 Speaker 1: a new one. Welcome to Prognosis. I'm your host, Michelle 6 00:00:27,000 --> 00:00:33,479 Speaker 1: fake Cortes. For the next eight weeks, we will be 7 00:00:33,520 --> 00:00:37,839 Speaker 1: exploring science and technology and medical research. We'll look at 8 00:00:37,880 --> 00:00:40,320 Speaker 1: how the treatments of tomorrow get into the hands of 9 00:00:40,400 --> 00:00:43,600 Speaker 1: patients who need them the most. Along the way, we'll 10 00:00:43,600 --> 00:00:48,080 Speaker 1: meet people living on the edge of innovation. There's the 11 00:00:48,120 --> 00:00:52,760 Speaker 1: scientist genetically engineering frogs in his garage, drug company researchers 12 00:00:52,840 --> 00:00:56,320 Speaker 1: using newly unlocked secrets of the body to cure deadly diseases. 13 00:00:57,160 --> 00:00:59,320 Speaker 1: And we'll hear about one man's quest in the desert 14 00:00:59,400 --> 00:01:02,280 Speaker 1: to turn as achedelic drug into a treatment for depression. 15 00:01:03,800 --> 00:01:05,720 Speaker 1: We begin our journey with the do it yourself device 16 00:01:05,760 --> 00:01:19,040 Speaker 1: that replaces one of the body's most critical organs. One 17 00:01:19,040 --> 00:01:22,520 Speaker 1: point three million Americans have Type one diabetes. That's the 18 00:01:22,560 --> 00:01:25,800 Speaker 1: most severe kind. It develops one cells in the pancreas 19 00:01:25,840 --> 00:01:29,160 Speaker 1: that make insulin stop working. Why it happens is still 20 00:01:29,200 --> 00:01:33,200 Speaker 1: a mystery. Insulin is the hormone that converts food into energy. 21 00:01:33,800 --> 00:01:37,240 Speaker 1: A healthy pancreas is a marvel pumping out precise amounts 22 00:01:37,240 --> 00:01:41,120 Speaker 1: of insulin at just the right time. There are dozens 23 00:01:41,120 --> 00:01:45,640 Speaker 1: of things that affect how much is made. Eating, drinking, exercising, sleeping, 24 00:01:45,760 --> 00:01:48,200 Speaker 1: you name it. It's a problem. If you don't make 25 00:01:48,240 --> 00:01:50,680 Speaker 1: any sugar builds up in the blood. It comes up 26 00:01:50,680 --> 00:01:53,120 Speaker 1: your organs like the kidneys in the heart and can 27 00:01:53,160 --> 00:01:56,920 Speaker 1: cause an early death. Diabetics can inject replacement insulin, but 28 00:01:57,000 --> 00:01:59,480 Speaker 1: they have to figure out how much to give and when. 29 00:02:00,240 --> 00:02:03,640 Speaker 1: Answering those two seemingly simple questions is what makes life 30 00:02:03,640 --> 00:02:06,840 Speaker 1: with diabetes miserable. You have to take on the duties 31 00:02:06,880 --> 00:02:10,880 Speaker 1: of a healthy pancreas all day, all night, three and 32 00:02:10,919 --> 00:02:13,800 Speaker 1: sixty five days of the year. There are tools to 33 00:02:13,840 --> 00:02:17,520 Speaker 1: help glucost monitors track blood sugar levels so people can 34 00:02:17,520 --> 00:02:20,519 Speaker 1: calculate how much insulin they need, and there are pumps 35 00:02:20,560 --> 00:02:23,120 Speaker 1: to deliver the insulin, but you have to tell it 36 00:02:23,160 --> 00:02:26,480 Speaker 1: what to do. Americans spend more than eight billion dollars 37 00:02:26,480 --> 00:02:29,040 Speaker 1: a year on these devices, but no one's been able 38 00:02:29,080 --> 00:02:31,480 Speaker 1: to get them connected and working together. To deliver the 39 00:02:31,560 --> 00:02:34,079 Speaker 1: right amount of insulin the way a real pancreas does. 40 00:02:36,040 --> 00:02:39,840 Speaker 1: Until now. This is a story about strangers coming together 41 00:02:39,880 --> 00:02:43,040 Speaker 1: from all over the world driven by a desperate need. 42 00:02:43,600 --> 00:02:46,200 Speaker 1: They banned it together on social media to take matters 43 00:02:46,240 --> 00:02:49,600 Speaker 1: into their own hands. Now, just to be clear, these 44 00:02:49,639 --> 00:02:52,880 Speaker 1: folks didn't build a mechanical version of the pancreas. What 45 00:02:52,960 --> 00:02:56,079 Speaker 1: they're actually doing is linking their insulin pumps to their 46 00:02:56,080 --> 00:03:00,000 Speaker 1: glucost monitors and getting them to work together without any 47 00:03:00,040 --> 00:03:04,800 Speaker 1: um involvement. None of this is FDA approved. Still, thousands 48 00:03:04,800 --> 00:03:07,240 Speaker 1: of people have tried it out on themselves and on 49 00:03:07,280 --> 00:03:11,000 Speaker 1: their diabetic kids, and they love it. More are signing 50 00:03:11,080 --> 00:03:21,919 Speaker 1: up every day. Here's Bloomberg's Naomi Kraski with the story. 51 00:03:24,000 --> 00:03:28,600 Speaker 1: Building your own pancreas can be pretty intimidating. There's software 52 00:03:28,639 --> 00:03:32,200 Speaker 1: code to install and Bluetooth and radio signals to sink 53 00:03:32,680 --> 00:03:36,440 Speaker 1: among the four electronic devices that you'll need to link together, 54 00:03:36,920 --> 00:03:40,160 Speaker 1: but there will be lots of people to help. Someone 55 00:03:40,200 --> 00:03:43,280 Speaker 1: you're likely to come across early on is a mom 56 00:03:43,320 --> 00:03:47,080 Speaker 1: from outside Toronto named Kate Farnsworth. Some people call her 57 00:03:47,120 --> 00:03:50,000 Speaker 1: Saint Kate because she spent so much time helping people 58 00:03:50,040 --> 00:03:54,880 Speaker 1: build their own diabetes technology. Kate lives in a quiet 59 00:03:54,920 --> 00:03:59,120 Speaker 1: suburb about an hour northwest of Toronto. She realized that 60 00:03:59,200 --> 00:04:02,200 Speaker 1: something was up with her daughter, Sydney more than six 61 00:04:02,280 --> 00:04:05,920 Speaker 1: years ago. Sydney had started drinking a lot of water 62 00:04:06,120 --> 00:04:11,080 Speaker 1: and eating a lot more than usual. I used to 63 00:04:11,080 --> 00:04:13,400 Speaker 1: say she was eating like a teenage boy, but she 64 00:04:13,480 --> 00:04:16,159 Speaker 1: was an eight year old girl. We used to have 65 00:04:16,240 --> 00:04:20,279 Speaker 1: to pack an extra snack after school and leaders of 66 00:04:20,640 --> 00:04:23,400 Speaker 1: extra water, and she'd cry when she ran out of water. 67 00:04:24,360 --> 00:04:27,719 Speaker 1: But even with all that extra eating, Sydney was losing weight. 68 00:04:28,400 --> 00:04:33,040 Speaker 1: Kate googled her symptoms and diabetes popped up. So I 69 00:04:33,080 --> 00:04:36,880 Speaker 1: took her to the family doctor and the family doctor said, well, 70 00:04:36,920 --> 00:04:39,359 Speaker 1: that's an easy test. We can just poke her finger 71 00:04:39,520 --> 00:04:42,400 Speaker 1: and see what's going on. Don't worry about it. And 72 00:04:42,440 --> 00:04:45,520 Speaker 1: the nurse poked her finger and she turned to the 73 00:04:45,520 --> 00:04:48,880 Speaker 1: other nurse and she said, it's not working. It's not 74 00:04:49,080 --> 00:04:52,279 Speaker 1: It doesn't say a number, it just says high. And 75 00:04:52,320 --> 00:04:55,320 Speaker 1: the nurse said that's because her blood sugar is too 76 00:04:55,440 --> 00:04:58,120 Speaker 1: high for the meter to read. And that was our 77 00:04:58,640 --> 00:05:03,400 Speaker 1: introduction to die beats. Sydney is now fifteen years old. 78 00:05:03,839 --> 00:05:06,440 Speaker 1: She still remembers how tough things were when she first 79 00:05:06,440 --> 00:05:12,400 Speaker 1: got the diagnosis. I was terrified because that's like I 80 00:05:12,560 --> 00:05:16,279 Speaker 1: was eight. I didn't want anything like this happening, and 81 00:05:16,320 --> 00:05:21,479 Speaker 1: it was just it was life changing. Yeah, people with 82 00:05:21,560 --> 00:05:26,040 Speaker 1: type one diabetes need to take replacement insulin, but messing 83 00:05:26,040 --> 00:05:30,040 Speaker 1: at the dosage can have catastrophic results, including going into 84 00:05:30,040 --> 00:05:33,520 Speaker 1: a coma or even dying. And figuring out how much 85 00:05:33,560 --> 00:05:37,320 Speaker 1: to take is really complicated. There are a ton of 86 00:05:37,360 --> 00:05:48,320 Speaker 1: things that affect blood sugar. So sleep can affect blood sugar, anxiety, adrenaline, food, stress, um, exercise, 87 00:05:49,279 --> 00:05:53,040 Speaker 1: but just basically everything affects blood sugar. Roller coasters make 88 00:05:53,080 --> 00:05:57,000 Speaker 1: her blood sugar drop, walking to school makes her blood 89 00:05:57,000 --> 00:06:01,840 Speaker 1: sugar drop. I've heard people say that boys walking by 90 00:06:01,880 --> 00:06:04,360 Speaker 1: and make their daughter's blood sugar go up as well. 91 00:06:04,839 --> 00:06:08,000 Speaker 1: I have not noticed that myself, but I'm not paying 92 00:06:08,000 --> 00:06:11,360 Speaker 1: that close attention. So Kate and her husband Dave were 93 00:06:11,360 --> 00:06:14,599 Speaker 1: getting up several times a night to check Sydney's blood sugar. 94 00:06:15,160 --> 00:06:18,000 Speaker 1: This is something that I heard a lot from parents 95 00:06:18,000 --> 00:06:21,400 Speaker 1: of kids with diabetes. When your kids are asleep, it's 96 00:06:21,440 --> 00:06:24,360 Speaker 1: hard for them to know when blood sugar levels are 97 00:06:24,400 --> 00:06:28,200 Speaker 1: dropping too low. There are these little devices called continuous 98 00:06:28,200 --> 00:06:32,279 Speaker 1: glucose monitors or cgms for short, that sound and alarm 99 00:06:32,320 --> 00:06:34,720 Speaker 1: when their readings are dipping too low. But they can 100 00:06:34,760 --> 00:06:37,760 Speaker 1: be really hard to hear, and until recently, you couldn't 101 00:06:37,760 --> 00:06:40,760 Speaker 1: tune into them from even a few rooms away. They're 102 00:06:40,800 --> 00:06:47,919 Speaker 1: also expensive. At first, Sydney didn't even have one, so 103 00:06:48,040 --> 00:06:52,120 Speaker 1: Dave would check Sydney's blood sugar at midnight before he 104 00:06:52,240 --> 00:06:56,400 Speaker 1: went to bed. Kate would set her alarm for three am, 105 00:06:56,400 --> 00:06:59,360 Speaker 1: when she set another alarm for six am. They were 106 00:06:59,480 --> 00:07:02,680 Speaker 1: so tie all the time. Kate thought there had to 107 00:07:02,720 --> 00:07:09,119 Speaker 1: be a better way. One day, I was googling UM, 108 00:07:09,120 --> 00:07:13,560 Speaker 1: researching whatever you want to call it, all things diabetes, 109 00:07:13,640 --> 00:07:16,320 Speaker 1: and I came across a blog and it had a 110 00:07:16,320 --> 00:07:19,880 Speaker 1: little girl who had a backpack with a cell phone 111 00:07:20,120 --> 00:07:24,160 Speaker 1: connected to this receiver Sydney wears, and it was broadcasting 112 00:07:24,160 --> 00:07:27,680 Speaker 1: their blood sugars to their parents. And I thought, that's 113 00:07:27,840 --> 00:07:29,760 Speaker 1: that's what I need. I need to be able to 114 00:07:29,800 --> 00:07:32,680 Speaker 1: see her blood sugar when she's not with me. Kay 115 00:07:32,760 --> 00:07:35,400 Speaker 1: found a group of parents who had managed to pull 116 00:07:35,560 --> 00:07:40,640 Speaker 1: data from cigns onto their smartphones and watches. This group 117 00:07:40,720 --> 00:07:43,120 Speaker 1: is called Knight Scout and it came up with the 118 00:07:43,240 --> 00:07:47,400 Speaker 1: first big d I Y advance. It helped parents track 119 00:07:47,880 --> 00:07:50,840 Speaker 1: how their kids were doing at school, at night, or 120 00:07:50,880 --> 00:07:55,960 Speaker 1: any other times when they weren't together. Up until that time, 121 00:07:56,480 --> 00:08:01,640 Speaker 1: you had to be within fifteen feet of the continuous 122 00:08:01,640 --> 00:08:06,520 Speaker 1: glucose monitor receiver that you received from uh dex Comm 123 00:08:06,600 --> 00:08:09,520 Speaker 1: or Metronic. This allowed you to be anywhere in the 124 00:08:09,520 --> 00:08:14,880 Speaker 1: world and still see your blood glucose values. That's Weston Nordgren, 125 00:08:15,040 --> 00:08:19,040 Speaker 1: a dad from Bakersfield, California. He helped start Night Scout 126 00:08:19,120 --> 00:08:23,760 Speaker 1: in a The group operates on the principle of pay 127 00:08:23,840 --> 00:08:27,240 Speaker 1: it forward. Every single family that set up that d 128 00:08:27,360 --> 00:08:30,720 Speaker 1: I Y system was supposed to help someone else figure 129 00:08:30,760 --> 00:08:34,520 Speaker 1: it out too, So they started with five families, and 130 00:08:34,559 --> 00:08:40,560 Speaker 1: what happened after that defied everyone's expectations. Within six weeks 131 00:08:40,600 --> 00:08:44,920 Speaker 1: of creating that group, there were one thousand, seven hundred families. 132 00:08:46,400 --> 00:08:53,240 Speaker 1: By September, there were seven thousand families. By December there 133 00:08:53,240 --> 00:08:59,400 Speaker 1: were ten thousand families. So it just exploded. So now 134 00:08:59,679 --> 00:09:02,800 Speaker 1: parents could watch their kids blood gluecoats. That was a 135 00:09:02,840 --> 00:09:06,120 Speaker 1: big deal, but some people were already thinking of taking 136 00:09:06,160 --> 00:09:09,920 Speaker 1: it further. The next advance would have been impossible if 137 00:09:10,000 --> 00:09:14,720 Speaker 1: not for a blunder by Metronic, the world's biggest medical 138 00:09:14,800 --> 00:09:17,760 Speaker 1: device maker, left a security gap and some of its 139 00:09:17,760 --> 00:09:22,520 Speaker 1: insulin pumps the wireless radio frequency link was open to hackers. 140 00:09:23,200 --> 00:09:27,240 Speaker 1: Ben West, a programmer and diabetes patient in California, found 141 00:09:27,280 --> 00:09:30,520 Speaker 1: the open back door and walked right through. I actually 142 00:09:30,559 --> 00:09:33,920 Speaker 1: don't describe it as a backdoor. Um, it's more like 143 00:09:33,960 --> 00:09:37,240 Speaker 1: the front door wasn't put on, it wasn't locked, or 144 00:09:37,280 --> 00:09:39,920 Speaker 1: it wasn't clear. No, like, there's just no door. There's 145 00:09:39,920 --> 00:09:45,440 Speaker 1: just there's just no door. What door. That explained to 146 00:09:45,520 --> 00:09:48,280 Speaker 1: me that there are two ways to protect against a hack. 147 00:09:48,679 --> 00:09:51,880 Speaker 1: You can make a strong defense or you can just 148 00:09:52,040 --> 00:09:55,320 Speaker 1: hide it. Try to keep the soft and vulnerable spot 149 00:09:55,320 --> 00:09:58,720 Speaker 1: a secret so it's safe. And that's the choice the 150 00:09:59,080 --> 00:10:02,800 Speaker 1: Metronic made. They designed this device. We're just gonna leave 151 00:10:02,840 --> 00:10:05,200 Speaker 1: it so that it's easy for us to test and 152 00:10:05,240 --> 00:10:08,400 Speaker 1: get out the door and ship very quickly. We'll keep 153 00:10:08,400 --> 00:10:11,240 Speaker 1: how it works a secret, and so we're claiming that 154 00:10:11,280 --> 00:10:13,520 Speaker 1: no one will know how it works, and since no 155 00:10:13,559 --> 00:10:15,560 Speaker 1: one knows how it works, no one will ever attack it. 156 00:10:15,840 --> 00:10:19,280 Speaker 1: That that's basically the tactic they took. Now it turns 157 00:10:19,320 --> 00:10:22,080 Speaker 1: out that you know, I came along, and I said, well, 158 00:10:22,160 --> 00:10:25,040 Speaker 1: it's on my body, and I actually need to know 159 00:10:25,080 --> 00:10:27,360 Speaker 1: how it works in order to make sure that it's 160 00:10:27,360 --> 00:10:30,240 Speaker 1: not doing the wrong thing to my body. Then started 161 00:10:30,280 --> 00:10:33,600 Speaker 1: the project in winter of two thousand nine. He was 162 00:10:33,640 --> 00:10:37,000 Speaker 1: already working at that point as a software engineer, and 163 00:10:37,040 --> 00:10:39,400 Speaker 1: then he got a job at a cloud computing startup. 164 00:10:39,960 --> 00:10:42,679 Speaker 1: He didn't have a whole lot of free time, so 165 00:10:42,720 --> 00:10:45,120 Speaker 1: he would take his metronic pump home with him to 166 00:10:45,240 --> 00:10:48,880 Speaker 1: his family over Christmas and New Year's and we would 167 00:10:48,880 --> 00:10:52,480 Speaker 1: spend the you know, almost the entire holiday just working 168 00:10:52,520 --> 00:10:54,560 Speaker 1: on this thing. You know, we would take poster paper 169 00:10:54,679 --> 00:10:57,640 Speaker 1: and start trying to figure out individual bits and bites 170 00:10:57,679 --> 00:11:00,880 Speaker 1: and the meaning of individual codes, and we would try 171 00:11:00,880 --> 00:11:03,240 Speaker 1: to dissect you know, what are these time stamps and 172 00:11:03,280 --> 00:11:06,520 Speaker 1: how are they encoding times and dates? And we would 173 00:11:06,600 --> 00:11:11,040 Speaker 1: kind of um pick these different topical areas and really 174 00:11:11,080 --> 00:11:14,800 Speaker 1: intensely attack it over the holiday period, and those were 175 00:11:14,880 --> 00:11:18,120 Speaker 1: usually very very productive sessions. What what we would do 176 00:11:18,240 --> 00:11:21,240 Speaker 1: is kind of form necklaces um out of these things, 177 00:11:21,280 --> 00:11:24,160 Speaker 1: so that you know, the glucoast meter plugs into a 178 00:11:24,280 --> 00:11:27,720 Speaker 1: USB cable and the USB cable goes into a computer 179 00:11:27,880 --> 00:11:31,240 Speaker 1: like a gumsticks or a raspberry pie, and then that 180 00:11:31,280 --> 00:11:34,360 Speaker 1: goes back into another USB cable that goes into another thing. 181 00:11:34,480 --> 00:11:36,440 Speaker 1: So pretty soon you've got this thing that kind of 182 00:11:36,480 --> 00:11:39,920 Speaker 1: twists itself around and loops around, and we would kind 183 00:11:39,920 --> 00:11:43,280 Speaker 1: of wear those around so that so that we could 184 00:11:43,280 --> 00:11:48,800 Speaker 1: continue working while moving around the house, I suppose. So 185 00:11:48,880 --> 00:11:52,080 Speaker 1: after about five years of work, Ben managed to reverse 186 00:11:52,160 --> 00:11:56,600 Speaker 1: engineer the pumps communications code. That means he figured out 187 00:11:56,640 --> 00:11:59,880 Speaker 1: how to tell the device what to do. Now the 188 00:12:00,040 --> 00:12:02,920 Speaker 1: d I wires had two pieces of the puzzle. They 189 00:12:02,960 --> 00:12:06,760 Speaker 1: would need to make an artificial pancreas they had night Scout, 190 00:12:07,160 --> 00:12:10,720 Speaker 1: which was pulling the blood glucos data off glucose monitors 191 00:12:11,000 --> 00:12:13,560 Speaker 1: for Sydney and Kate. That meant either of them could 192 00:12:13,559 --> 00:12:16,480 Speaker 1: watch Sydney's blood sugar from a smart watch while Sydney 193 00:12:16,520 --> 00:12:20,280 Speaker 1: was in school or if she was asleep. Now Ben 194 00:12:20,320 --> 00:12:23,600 Speaker 1: had hacked the pump, the final piece of the puzzle 195 00:12:23,800 --> 00:12:27,440 Speaker 1: would be an algorithm. That's a script that shows a 196 00:12:27,480 --> 00:12:32,480 Speaker 1: computer how to do a repetitive but complicated task like 197 00:12:32,679 --> 00:12:41,480 Speaker 1: calculating insulin doses. Entered Dana Lewis. She lives in Seattle 198 00:12:41,640 --> 00:12:44,480 Speaker 1: and she has diabetes. So if I sat down to 199 00:12:44,520 --> 00:12:46,720 Speaker 1: have lunch, I would be looking at a plate of 200 00:12:46,760 --> 00:12:48,560 Speaker 1: food and I would have to do math to figure 201 00:12:48,600 --> 00:12:51,400 Speaker 1: out how many grams of carbohydrate around the food. I'd 202 00:12:51,440 --> 00:12:53,920 Speaker 1: also have to look at what my current blood glucose is, 203 00:12:54,240 --> 00:12:56,000 Speaker 1: and if I had a c GM, I'd be looking 204 00:12:56,000 --> 00:12:58,720 Speaker 1: at the past couple of hours trying to visually predict 205 00:12:58,720 --> 00:13:00,560 Speaker 1: in my head what is the freend of my blood 206 00:13:00,600 --> 00:13:02,920 Speaker 1: suger what's going to happen. I also had to look 207 00:13:02,960 --> 00:13:05,559 Speaker 1: at my pump and get the information about how much 208 00:13:05,600 --> 00:13:08,440 Speaker 1: insulin I already had active in my body, and so 209 00:13:08,520 --> 00:13:11,440 Speaker 1: I had to combine the current glucose kind of what 210 00:13:11,480 --> 00:13:14,440 Speaker 1: has happened in the past, this insulin amount, predict what 211 00:13:14,440 --> 00:13:16,880 Speaker 1: I was going to happen, add in the calculation of 212 00:13:16,880 --> 00:13:18,800 Speaker 1: how much food and how that was going to impact 213 00:13:18,840 --> 00:13:21,560 Speaker 1: my body, and decide how much insulin do I need? 214 00:13:21,960 --> 00:13:23,680 Speaker 1: And not only how much insulin do I need, but 215 00:13:23,760 --> 00:13:27,400 Speaker 1: how should I time it. Dana and her partner, Scott Librand, 216 00:13:27,840 --> 00:13:30,400 Speaker 1: decided that it would be a lot simpler to let 217 00:13:30,400 --> 00:13:34,280 Speaker 1: the computer do some of that calculating, so they wrote 218 00:13:34,320 --> 00:13:38,600 Speaker 1: an algorithm. At first, it would only spit out recommendations. 219 00:13:39,280 --> 00:13:42,240 Speaker 1: Then they took their project to a conference and they 220 00:13:42,280 --> 00:13:46,600 Speaker 1: met Ben. It was June, and we stood beside him 221 00:13:46,640 --> 00:13:48,400 Speaker 1: kind of demonstrating what we've been working on, and he 222 00:13:48,440 --> 00:13:50,760 Speaker 1: was demonstrating the fact that he could read and write 223 00:13:50,760 --> 00:13:54,400 Speaker 1: to this metronic pump. And it actually wasn't until a 224 00:13:54,440 --> 00:13:57,080 Speaker 1: few weeks or months later that another light bulb went 225 00:13:57,080 --> 00:13:59,840 Speaker 1: off and we went, hey, we've got this algorithm that 226 00:14:00,040 --> 00:14:04,080 Speaker 1: takes data and predictionto the future. What should happen if 227 00:14:04,160 --> 00:14:07,320 Speaker 1: we combined it with his code to talk between the devices. 228 00:14:07,880 --> 00:14:10,040 Speaker 1: Instead of telling the human what to do, we could 229 00:14:10,040 --> 00:14:12,840 Speaker 1: actually write directly to the insulin pump and tell it 230 00:14:13,160 --> 00:14:16,160 Speaker 1: to give more or less insulin. So then they had 231 00:14:16,200 --> 00:14:18,880 Speaker 1: to figure out how to close the loop. They didn't 232 00:14:18,920 --> 00:14:22,920 Speaker 1: start out knowing exactly what they would build, but they 233 00:14:23,000 --> 00:14:26,520 Speaker 1: just started working on the problem step by step, trading 234 00:14:26,560 --> 00:14:30,440 Speaker 1: the ideas back and forth. So I live in Seattle, Scott, 235 00:14:30,480 --> 00:14:33,120 Speaker 1: who was then my boyfriend, lived twenty miles away, and Everett, Washington, 236 00:14:33,360 --> 00:14:36,000 Speaker 1: and Ben was based out of San Francisco, and so 237 00:14:36,160 --> 00:14:38,400 Speaker 1: we would collaborate in a variety of ways. We would 238 00:14:38,480 --> 00:14:40,720 Speaker 1: use a chat channel called getter, which is connected to 239 00:14:40,720 --> 00:14:42,560 Speaker 1: get hub, where we would get on and start talking. 240 00:14:43,040 --> 00:14:46,520 Speaker 1: We used Twitter. Um. We also just used phone calls 241 00:14:46,520 --> 00:14:48,640 Speaker 1: where we would get on speaker phone and be programming 242 00:14:48,960 --> 00:14:51,000 Speaker 1: and using the chat channel and also talking by phone. 243 00:14:51,040 --> 00:14:52,720 Speaker 1: There was also times where Scott would need to go 244 00:14:52,720 --> 00:14:54,520 Speaker 1: down to San Francisco for work, so he and Ben 245 00:14:54,520 --> 00:14:56,560 Speaker 1: would beat up. Sometimes I would be in San Francisco, 246 00:14:56,600 --> 00:15:00,000 Speaker 1: we beat up in person, you know, on nights and weekends, um, 247 00:15:00,040 --> 00:15:02,720 Speaker 1: and really just kind of plucking away at Oh, we 248 00:15:02,760 --> 00:15:04,840 Speaker 1: found a problem, let's resolve it. Okay, we found the 249 00:15:04,880 --> 00:15:07,520 Speaker 1: next problem in the next obstacle, let's figure out how 250 00:15:07,560 --> 00:15:10,920 Speaker 1: to tackle it. In December, the group finally felt like 251 00:15:10,960 --> 00:15:14,600 Speaker 1: they had surmounted all of the obstacles. They enough finally 252 00:15:14,680 --> 00:15:18,000 Speaker 1: felt confident enough to become the first human tester for 253 00:15:18,080 --> 00:15:21,920 Speaker 1: her new artificial pancreas. Originally my plan was just to 254 00:15:22,120 --> 00:15:24,440 Speaker 1: test it for a couple of hours, but I was like, 255 00:15:24,480 --> 00:15:26,920 Speaker 1: you know what, I really I want to go to sleep, 256 00:15:26,920 --> 00:15:28,440 Speaker 1: and I want to go to sleep with this thing working. 257 00:15:29,080 --> 00:15:31,680 Speaker 1: And so we set up all of our backup alarms 258 00:15:31,800 --> 00:15:34,640 Speaker 1: and I went off and went to sleep with the system. 259 00:15:34,680 --> 00:15:36,760 Speaker 1: And I woke up the next morning and I felt 260 00:15:37,120 --> 00:15:39,680 Speaker 1: better than I ever had before because I woke up 261 00:15:39,680 --> 00:15:42,280 Speaker 1: with my blood suger in perfect range where I wanted 262 00:15:42,320 --> 00:15:45,000 Speaker 1: to be. I hadn't been low overnight, my blood sager 263 00:15:45,000 --> 00:15:47,320 Speaker 1: hadn't been high overnight. I wasn't interrupted in my sleep. 264 00:15:47,320 --> 00:15:48,880 Speaker 1: I didn't have to drink a juice box. I didn't 265 00:15:48,920 --> 00:15:51,000 Speaker 1: have to press a button on my pump. I got 266 00:15:51,000 --> 00:15:55,360 Speaker 1: ten uninterrupted hours of sleep, and it was glorious. The 267 00:15:55,480 --> 00:15:58,520 Speaker 1: d i Y community was all about open source, or 268 00:15:58,560 --> 00:16:02,440 Speaker 1: sharing code, so Scott, Dana, and Ben wanted to share 269 00:16:02,480 --> 00:16:05,080 Speaker 1: what they learned so that others could also feel and 270 00:16:05,080 --> 00:16:08,680 Speaker 1: sleep better. But it wasn't just up to them. There's 271 00:16:08,760 --> 00:16:11,560 Speaker 1: also the f d A, or the Food and Drug Administration, 272 00:16:11,920 --> 00:16:15,320 Speaker 1: which regulates devices in the US. They were worried that 273 00:16:15,400 --> 00:16:17,880 Speaker 1: the FDA would come down on them for sharing something 274 00:16:18,000 --> 00:16:21,760 Speaker 1: they'd cooked up at home. In the end, after talking 275 00:16:21,760 --> 00:16:23,960 Speaker 1: to the f d A, weighing the pros and cons, 276 00:16:24,320 --> 00:16:27,560 Speaker 1: they decided to post their work online, with one important 277 00:16:27,600 --> 00:16:30,960 Speaker 1: caveat the people who wanted to use it would have 278 00:16:31,040 --> 00:16:34,760 Speaker 1: to build it themselves. First, only a few tried it out, 279 00:16:35,560 --> 00:16:39,240 Speaker 1: then more and more. Kay was watching too. She was 280 00:16:39,320 --> 00:16:44,040 Speaker 1: intrigued but also intimidated. It seemed very complicated to build. 281 00:16:44,760 --> 00:16:47,680 Speaker 1: But then another member of the community designed a more 282 00:16:47,800 --> 00:16:51,880 Speaker 1: user friendly version for the iPhone called Loop. In sixteen, 283 00:16:52,080 --> 00:16:55,080 Speaker 1: Kate saw it in action. A friend's little boy was 284 00:16:55,200 --> 00:17:00,000 Speaker 1: running around having his blood sugar automatically adjusted by the system. 285 00:17:00,080 --> 00:17:02,760 Speaker 1: She started looking for the parts she needed. That same day, 286 00:17:03,360 --> 00:17:08,080 Speaker 1: Medtronic had closed Ben's open door on its newer pumps, 287 00:17:08,600 --> 00:17:11,119 Speaker 1: so Kate had to get ahold of an older model. 288 00:17:11,680 --> 00:17:15,600 Speaker 1: Someone gave her one. Then she ordered a tiny Bluetooth 289 00:17:15,640 --> 00:17:19,760 Speaker 1: equipped computer, which enabled the pieces of the Loop system, 290 00:17:19,800 --> 00:17:23,359 Speaker 1: so the insulin pump, the glucose monitor, the iPhone app 291 00:17:23,400 --> 00:17:26,560 Speaker 1: with the algorithm to talk to each other another d 292 00:17:26,720 --> 00:17:30,360 Speaker 1: I wire. A dad from Minnesota named Peach Fomb had 293 00:17:30,400 --> 00:17:33,200 Speaker 1: designed the device for his daughter and named it after her, 294 00:17:33,600 --> 00:17:50,640 Speaker 1: calling it the Riley Link. Kate got to work. There 295 00:17:50,640 --> 00:17:54,080 Speaker 1: weren't a lot of instructions to follow, but just enough. 296 00:17:54,880 --> 00:17:58,040 Speaker 1: I built the app on her phone, and then I 297 00:17:58,160 --> 00:18:02,760 Speaker 1: set up um the spare pump and the Riley Link, 298 00:18:03,040 --> 00:18:07,120 Speaker 1: and uh the iPhone and let it run, but not 299 00:18:07,200 --> 00:18:10,439 Speaker 1: connected to Sydney. I just filled the insulin pump with 300 00:18:10,480 --> 00:18:14,040 Speaker 1: water and let it drip out as if it were 301 00:18:14,119 --> 00:18:17,760 Speaker 1: giving Sydney insulin. She watched on and off for hours 302 00:18:18,000 --> 00:18:21,040 Speaker 1: as the pump pushed out tiny squirts of water into 303 00:18:21,040 --> 00:18:24,560 Speaker 1: a napkin. Or of course, it wasn't affecting her blood 304 00:18:24,560 --> 00:18:26,840 Speaker 1: sugar at that time because it wasn't hooked up to her, 305 00:18:27,240 --> 00:18:29,919 Speaker 1: but I could see the logic between behind what it 306 00:18:29,960 --> 00:18:33,320 Speaker 1: was trying to do. Kate hooked Sydney up to the 307 00:18:33,359 --> 00:18:36,399 Speaker 1: system on a Friday afternoon so she could keep a 308 00:18:36,440 --> 00:18:39,639 Speaker 1: close eye on how it was working. It started keeping 309 00:18:39,640 --> 00:18:42,720 Speaker 1: Sydney's blood sugar in range without Kate having to do 310 00:18:42,880 --> 00:18:46,800 Speaker 1: much of anything. All of a sudden, you know, life changed. 311 00:18:47,080 --> 00:18:50,880 Speaker 1: When you're not spending all of your time worrying about diabetes, 312 00:18:51,400 --> 00:18:55,080 Speaker 1: you have all this extra time in your life. Sydney 313 00:18:55,119 --> 00:18:58,680 Speaker 1: stopped worrying too. I'm a teenager. I have my phone 314 00:18:58,720 --> 00:19:01,720 Speaker 1: with me Tony for seven All I have to do 315 00:19:02,000 --> 00:19:05,720 Speaker 1: is open an app, putting my carbs, get my insulin, 316 00:19:05,760 --> 00:19:09,760 Speaker 1: and keep going. It's just so much easier than having 317 00:19:09,800 --> 00:19:13,320 Speaker 1: to go a whole another level of just pulling out 318 00:19:13,359 --> 00:19:15,960 Speaker 1: my pump, doing all that cliping it back on, going 319 00:19:16,000 --> 00:19:18,400 Speaker 1: back to what I was doing. Does anybody even really 320 00:19:18,400 --> 00:19:22,240 Speaker 1: have to know if you're adjusting your carbs now? I mean, 321 00:19:22,520 --> 00:19:25,840 Speaker 1: would anybody even realize what you're doing. No. Sometimes I'm 322 00:19:25,840 --> 00:19:28,159 Speaker 1: sitting at lunch and I'm just giving insulin on my 323 00:19:28,200 --> 00:19:30,520 Speaker 1: phone and my friends just think I'm on my phone 324 00:19:30,680 --> 00:19:41,480 Speaker 1: looking at something just like totally normal. Yeah, just to 325 00:19:41,560 --> 00:19:44,520 Speaker 1: be clear, this is a d I Y hack. No 326 00:19:44,800 --> 00:19:47,640 Speaker 1: pump on the commercial market. Let's you dose insulin from 327 00:19:47,680 --> 00:19:52,600 Speaker 1: your iPhone. Yet. Metronic, the world's biggest maker of insulin pumps, 328 00:19:52,640 --> 00:19:56,280 Speaker 1: is watching closely. They're working on an artificial pancrease too. 329 00:19:57,040 --> 00:20:00,440 Speaker 1: They have one device on the market now. The it's 330 00:20:00,520 --> 00:20:04,320 Speaker 1: not as advanced. It doesn't adjust insulin for meal times 331 00:20:04,359 --> 00:20:07,480 Speaker 1: like Dana system does, and it doesn't allow dos thing 332 00:20:07,560 --> 00:20:10,720 Speaker 1: from an iPhone like Sydney's does. What it does do 333 00:20:11,000 --> 00:20:14,640 Speaker 1: is make the tiny little adjustments that happen in between meals. 334 00:20:15,400 --> 00:20:19,000 Speaker 1: That's already enough to be a big advance. The device, 335 00:20:19,240 --> 00:20:24,280 Speaker 1: which sells for seven thousand dollars, is going like hotcakes. 336 00:20:24,320 --> 00:20:28,240 Speaker 1: So far, more than one thousand people have one. But 337 00:20:28,280 --> 00:20:31,639 Speaker 1: there's another big difference between d I Y Systems and 338 00:20:31,680 --> 00:20:35,600 Speaker 1: the equipment Metronics cells. Before its products go on the market, 339 00:20:36,000 --> 00:20:38,879 Speaker 1: Metronic needs to prove to the f d A that 340 00:20:38,960 --> 00:20:42,119 Speaker 1: they will be safe for every one of the thousands 341 00:20:42,280 --> 00:20:45,520 Speaker 1: or sometimes millions of people who buy them. I talked 342 00:20:45,560 --> 00:20:48,040 Speaker 1: to Ali d and Natty, who handles R and D 343 00:20:48,240 --> 00:20:53,679 Speaker 1: in Metronics Intensive Insulin Management Unit. We're regulated for a reason, 344 00:20:53,880 --> 00:20:56,880 Speaker 1: to make sure that we control as many of those 345 00:20:57,359 --> 00:21:00,920 Speaker 1: variables as we can and think about all the potential 346 00:21:00,920 --> 00:21:04,960 Speaker 1: corner cases so that you know, any something catastrophic doesn't happen, 347 00:21:05,000 --> 00:21:10,320 Speaker 1: because ultimately these patients and families are dosing insulin, and 348 00:21:10,520 --> 00:21:14,400 Speaker 1: insulin can be a very, very dangerous thing. It's hard 349 00:21:14,440 --> 00:21:17,399 Speaker 1: to track whether anyone was hurt while using a d 350 00:21:17,480 --> 00:21:20,760 Speaker 1: I Y system. Everyone I met while reporting the story 351 00:21:20,880 --> 00:21:24,400 Speaker 1: said they had never heard of anybody being seriously injured. 352 00:21:24,960 --> 00:21:28,760 Speaker 1: But diabetes is a dangerous disease and the risk does exist. 353 00:21:30,320 --> 00:21:32,719 Speaker 1: Some of the d I wires are working towards the 354 00:21:32,760 --> 00:21:36,040 Speaker 1: same f d A seal of approval that Metronic has. 355 00:21:36,640 --> 00:21:40,399 Speaker 1: Last month, an open source group called tide Pool announced 356 00:21:40,400 --> 00:21:43,800 Speaker 1: that it is building an FDA regulated version of LOOP, 357 00:21:44,359 --> 00:21:47,000 Speaker 1: which is the system that Sydney is using. The goal 358 00:21:47,200 --> 00:21:50,439 Speaker 1: is to have an official product that's available on the 359 00:21:50,440 --> 00:21:54,120 Speaker 1: iPhone app store and compatible with pumps that you can 360 00:21:54,119 --> 00:21:58,200 Speaker 1: buy today. If they succeed. What was once a radical 361 00:21:58,320 --> 00:22:06,680 Speaker 1: approach to diabetes will come perhaps mainstream for now, though, Kate, Sydney, 362 00:22:06,760 --> 00:22:08,959 Speaker 1: and the other d I wires are making do with 363 00:22:09,000 --> 00:22:13,320 Speaker 1: their homemade systems and their ranks are growing. Kate took 364 00:22:13,400 --> 00:22:15,720 Speaker 1: all that time that she gained from not having to 365 00:22:15,800 --> 00:22:19,320 Speaker 1: micromanaged Sydney's diabetes and invested it in the d I 366 00:22:19,440 --> 00:22:23,280 Speaker 1: y community. She runs a Facebook group called looped that 367 00:22:23,400 --> 00:22:27,400 Speaker 1: has almost six thousand members, and she spends hours every 368 00:22:27,480 --> 00:22:31,920 Speaker 1: day helping other people set up systems like Sydneys. Kate 369 00:22:32,040 --> 00:22:35,880 Speaker 1: enjoys helping others, but she's looking forward to the day 370 00:22:35,920 --> 00:22:39,080 Speaker 1: when she won't have to because an FDA approved medical 371 00:22:39,119 --> 00:22:44,399 Speaker 1: device will be on the market. I would love to 372 00:22:44,440 --> 00:22:46,600 Speaker 1: be put out of a job one day by a 373 00:22:46,680 --> 00:22:50,880 Speaker 1: company I I don't want to do this long term. 374 00:22:50,880 --> 00:22:53,639 Speaker 1: I would love everyone to get a system that works 375 00:22:53,680 --> 00:22:57,320 Speaker 1: for them and right out of the box, so that 376 00:22:57,359 --> 00:23:01,160 Speaker 1: we don't have to keep doing this. Kate took a 377 00:23:01,160 --> 00:23:04,720 Speaker 1: big risk when she plunged into building an artificial pancreas 378 00:23:04,760 --> 00:23:08,760 Speaker 1: for her daughter. She didn't have medical or high tech experience. 379 00:23:09,440 --> 00:23:13,399 Speaker 1: There was always the possibility that something could go terribly wrong, 380 00:23:14,280 --> 00:23:17,680 Speaker 1: but the results are really hard to argue with. Sydney 381 00:23:17,760 --> 00:23:20,400 Speaker 1: is in good health, and she's living her life more 382 00:23:20,520 --> 00:23:24,359 Speaker 1: or less like any other well adjusted teenager. And that's 383 00:23:24,480 --> 00:23:29,199 Speaker 1: been worth everything. I mean, just the fact that I 384 00:23:29,240 --> 00:23:33,000 Speaker 1: can live my life normally instead of having a hundred 385 00:23:33,000 --> 00:23:36,280 Speaker 1: different things to focus on, and it lowers the stress 386 00:23:36,280 --> 00:23:40,040 Speaker 1: a lot. Would you ever go back to the way 387 00:23:40,080 --> 00:23:59,280 Speaker 1: it was before? Oh? No, way, never. And that's it 388 00:23:59,400 --> 00:24:03,080 Speaker 1: for this week's Arognosis. Thanks for listening. Do you have 389 00:24:03,119 --> 00:24:05,840 Speaker 1: a story about healthcare in the US or around the world. 390 00:24:06,320 --> 00:24:08,919 Speaker 1: We want to hear from you. You can email me 391 00:24:09,080 --> 00:24:12,000 Speaker 1: at m Cortes at Bloomberg dot net or find me 392 00:24:12,040 --> 00:24:15,480 Speaker 1: on Twitter at fay Cortes. If you were a fan 393 00:24:15,560 --> 00:24:17,960 Speaker 1: of this episode, please take a moment to rate and 394 00:24:18,000 --> 00:24:22,639 Speaker 1: review us. It helps new listeners find the show. This 395 00:24:22,760 --> 00:24:26,280 Speaker 1: episode was produced by Liz Smith. Our story editor was 396 00:24:26,359 --> 00:24:30,840 Speaker 1: Rick Shine. Thanks to Drew Armstrong. Francesco leabe is, head 397 00:24:30,840 --> 00:24:34,000 Speaker 1: of Bloomberg Podcasts. We'll see you next week.