Speaker 1: High Prognosis listeners, We're looking back at our favorite episodes
Speaker 1: from previous seasons over the next four weeks. We start
Speaker 1: with our very first episode ever, where a community came
Speaker 1: together to develop a biohack that revolutionized life for diabetics.
Speaker 1: Thanks for listening and enjoy the show. Hm hm hm.
Speaker 1: What do you do when a piece of your body's
Speaker 1: hardware goes haywire? If you have Type one diabetes, that
Speaker 1: damaged hardware is your pancreas. There's no way to fix
Speaker 1: a broken pancreas, but you can build a new one.
Speaker 1: Welcome to Prognosis. I'm your host, Michelle fake Cortez. For
Speaker 1: the next eight weeks, we'll be exploring science and technology
Speaker 1: and medical research. We'll look at how the treatments of
Speaker 1: tomorrow get into the hands of patients who need them
Speaker 1: the most. Along the way, we'll meet people living on
Speaker 1: the edge of innovation. There's the scientist genetically engineering frogs
Speaker 1: in his garage, drug company researchers using newly unlocked secrets
Speaker 1: of the body to cure deadly diseases. And we'll hear
Speaker 1: about one man's quest in the desert to turn a
Speaker 1: psychedelic drug into a treatment for depression. We begin our
Speaker 1: journey with the do it yourself device that replaces one
Speaker 1: of the body's most critical organs. One point three million
Speaker 1: Americans have Type one diabetes. That's the most severe kind.
Speaker 1: It develops one cells in the pancreas that make insulin
Speaker 1: stop working. Why it happens is still a mystery. Insulin
Speaker 1: is the hormone that converts food into energy. A healthy
Speaker 1: pancreas is a marvel pumping out precise amounts of insulin
Speaker 1: at just the right time. They're dozens of things that
Speaker 1: affect how much is made, eating, drinking, exercising, sleeping, you
Speaker 1: name it. It's a problem. If you don't make any
Speaker 1: sugar builds up in the blood. It comes up your
Speaker 1: organs like the kidneys in the heart and can cause
Speaker 1: an early death. Diabetics can inject replacement insulin, but they
Speaker 1: have to figure out how much to give and when.
Speaker 1: Answering those two seemingly simple questions is what makes life
Speaker 1: with diabetes miserable. You have to take on the duties
Speaker 1: of a healthy pancreas all day, all night, three and
Speaker 1: sixty five days of the year. There are tools to
Speaker 1: help glucose monitors track blood sugar levels, so people can
Speaker 1: calculate how much insulin they need, and there are pumps
Speaker 1: to deliver the insulin, but you have to tell it
Speaker 1: what to do. Americans spend more than eight billion dollars
Speaker 1: a year on these devices, but no one's been able
Speaker 1: to get them connected and working together to deliver the
Speaker 1: right amount of insulin the way a real pancreas does
Speaker 1: until now. This is a story about strangers coming together
Speaker 1: from all over the world, driven by a desperate need.
Speaker 1: They banded together on social media to take matters into
Speaker 1: their own hands. Now, just to be clear, these folks
Speaker 1: didn't build a mechanical version of the pancreas. What they're
Speaker 1: actually doing is linking their insulin pumps to their glucost
Speaker 1: monitors and getting them to work together without any human involvement.
Speaker 1: None of this is FDA approved. Still, thousands of people
Speaker 1: have tried it out on themselves and on their diabetic kids,
Speaker 1: and they love it. More are signing up every day.
Speaker 1: Here's Bloomberg's Naomi Kresky with the story. Building your own
Speaker 1: pancreas can be pretty intimidating. There's software code to install,
Speaker 1: and bluetooth and radio signals to sink. Among the four
Speaker 1: electronic devices that you'll need to link together, but there
Speaker 1: will be lots of people to help. Someone you're likely
Speaker 1: to come across early on is a mom from outside
Speaker 1: Toronto named Kate Farnsworth. Some people call her Saying Kate
Speaker 1: because she spent so much time helping people build their
Speaker 1: own diabetes technology. Kate lives in a quiet suburb about
Speaker 1: an hour northwest of Toronto. She realized that something was
Speaker 1: up with her daughter, Sydney more than six years ago.
Speaker 1: Sydney had started drinking a lot of water and eating
Speaker 1: a lot more than usual. I used to say she
Speaker 1: was eating like a teenage boy, but she was an
Speaker 1: eight year old girl. We used to have to pack
Speaker 1: an extra snack after school and leaders of extra water,
Speaker 1: and she'd cry when she ran out of water. But
Speaker 1: even with all that extra eating, Sydney was losing weight.
Speaker 1: Kate googled her symptoms and diabetes popped up. So I
Speaker 1: took her to the family doctor, and the family doctor said, well,
Speaker 1: that's an easy test. We can just poke her finger
Speaker 1: and see what's going on. Don't worry about it. And
Speaker 1: the nurse poked her finger and she turned to the
Speaker 1: other nurse and she said it's not working. It's not
Speaker 1: It doesn't say a number, it just says high. And
Speaker 1: the nurse said that's because her blood sugar is too
Speaker 1: high for the meter to read. And that was our
Speaker 1: introduction to diabetes. Sydney is now fifteen years old. She
Speaker 1: still remembers how tough things were when she first got
Speaker 1: the diagnosis. I was terrified because that's like I was eight.
Speaker 1: I didn't want anything like this happening, and it was
Speaker 1: just there was life changing. Yeah, people with type one
Speaker 1: diabetes need to take replacement insulin, but messing at the
Speaker 1: dosage can have catastrophic results, including going into a coma
Speaker 1: or even dying, and figuring out how much to take
Speaker 1: is really complicated. There are a ton of things that
Speaker 1: affect blood sugar. So sleep can affect blood sugar, anxiety, adrenaline,
Speaker 1: food stress, um, exercise, but just basically everything affects blood sugar.
Speaker 1: Roller coasters make her blood sugar drop, walking to school
Speaker 1: makes her blood sugar drop. I've heard people say that
Speaker 1: boys walking by make their daughter's blood sugar go up
Speaker 1: as well. I have not noticed that myself, but I'm
Speaker 1: not paying that close attention. So Kate and her husband, Dave.
Speaker 1: We're getting up several times a night to check Sydney's
Speaker 1: blood sugar. This is something that I heard a lot
Speaker 1: from parents of kids with diabetes. When your kids are asleep,
Speaker 1: it's hard for them to know when blood sugar levels
Speaker 1: are dropping too low. There are these little devices called
Speaker 1: continuous glucose monitors or cgms for short, that sound and
Speaker 1: alarm when their readings are dipping too low. But they
Speaker 1: can be really hard to hear, and until recently, you
Speaker 1: couldn't tune into them from even a few rooms away.
Speaker 1: They're also expensive. At first, Sydney didn't even have one,
Speaker 1: so Davi would check Sydney's blood sugar at midnight before
Speaker 1: he went to bed. Kate would set her alarm for
Speaker 1: three am, when she set another alarm for six am.
Speaker 1: They were so tired all the time. Kate thought there
Speaker 1: had to be a better way. One day, I was googling, um,
Speaker 1: researching whatever you want to call it, all things diabetes,
Speaker 1: and I came across a blog and it had a
Speaker 1: little girl who had a backpack with a cell phone
Speaker 1: connected to this receiver Sydney wears, and it was broadcasting
Speaker 1: their blood sugars to their parents, and I thought, that's
Speaker 1: that's what I need. I need to be able to
Speaker 1: see her blood sugar when she's not with me. Kate
Speaker 1: found a group of parents who had managed to pull
Speaker 1: data from signs onto their smartphones and watches. This group
Speaker 1: is called Knight Scout, and it came up with the
Speaker 1: first big d I Y advance. It helped parents track
Speaker 1: how their kids were doing at school, at night, or
Speaker 1: any other times when they weren't together. Up until that time,
Speaker 1: you had to be within fifteen feet of the continuous
Speaker 1: glucose monitor receiver that you received from uh dex commer Metronic.
Speaker 1: This allowed you to be anywhere in the world and
Speaker 1: still see your blood glucose values. That's Weston Nordgren, a
Speaker 1: dad from Bakersfield, California. He helped start Night Scout in
Speaker 1: a The group operates on the principle of pay it forward.
Speaker 1: Every single family that set up the d I Y
Speaker 1: system was supposed to help someone else figure it out too,
Speaker 1: So they started with five families, and what happened after
Speaker 1: that defied everyone's expectations. Within six weeks of creating that group,
Speaker 1: there were one thousand, seven hundred families. By September, there
Speaker 1: were seven thousand families. By December there were ten thousand families.
Speaker 1: So it just exploded. So now parents could watch their
Speaker 1: kids blood glucose. That was a big deal, but some
Speaker 1: people were already thinking of taking it further. The next
Speaker 1: advance would have been impossible if not for a blunder
Speaker 1: by Metronic, the world's biggest medical device maker, left a
Speaker 1: security gap and some of its insulin pumps the wireless
Speaker 1: radio frequency link was open to hackers. Ben West, a
Speaker 1: programmer and diabetes patient in California, found the open back
Speaker 1: door and walked right through. I actually don't describe it
Speaker 1: as a backdoor. Um, it's more like the front door
Speaker 1: wasn't put on, it wasn't locked, or it wasn't clearly no,
Speaker 1: Like there's just no door. There's just there's just no door.
Speaker 1: What door. That explains to me that there are two
Speaker 1: ways to protect against a hack. You can make a
Speaker 1: strong defense or you can just hide it. Try to
Speaker 1: keep the soft and vulnerable spot a secret so it's safe.
Speaker 1: And that's the choice the Metronic made when they designed
Speaker 1: this device. We're just gonna leave it so that it's
Speaker 1: easy for us to test and get out the door
Speaker 1: and ship very quickly. We'll keep how it works a secret,
Speaker 1: and so we're claiming that no one will know how
Speaker 1: it works, and since no one knows how it works,
Speaker 1: no one will ever attack it. That that's basically the
Speaker 1: tactic piptok. Now, it turns out that you know, I
Speaker 1: came along and I said, well, it's on my body,
Speaker 1: and I actually need to know how it works in
Speaker 1: order to make sure that it's not doing the wrong
Speaker 1: thing to my body. Ben started the project in winter
Speaker 1: of two thousand nine. He was already working at that
Speaker 1: point as a software engineer, and then he got a
Speaker 1: job at a cloud computing startup. He didn't have whole
Speaker 1: lot of free time, so he would take his metronic
Speaker 1: pump home with him to his family over Christmas and
Speaker 1: New Years, and we would spend the you know, almost
Speaker 1: the entire holiday just working on this thing. You know.
Speaker 1: We would take poster paper and start trying to figure
Speaker 1: out individual bits and bites and the meaning of individual codes,
Speaker 1: and we would try to dissect, you know, what are
Speaker 1: these time stamps and how are they encoding times and dates?
Speaker 1: And we would kind of um pick these different topical
Speaker 1: areas and really intensely attack it over the holiday period,
Speaker 1: and those were usually very very productive sessions. What what
Speaker 1: we would do is kind of form necklaces um out
Speaker 1: of these things, so that you know, the glucoast meter
Speaker 1: plugs into a USB cable, and the USB cable goes
Speaker 1: into a computer like a gumsticks or a Raspberry Pie,
Speaker 1: and then that goes back into another USB cable that
Speaker 1: goes into another thing. So pretty soon you've got this
Speaker 1: thing that kind of twists itself around and loops around.
Speaker 1: And we would kind of wear those around so that
Speaker 1: so that we could continue working while moving around the house,
Speaker 1: I suppose. So after about five years of work, Ben
Speaker 1: managed to reverse engineer the pumps communications code. That means
Speaker 1: he figured out how to tell the device what to do.
Speaker 1: Now that d I Wires had two pieces of the puzzle,
Speaker 1: they would need to make an artificial pancreasis. They had
Speaker 1: night Scout, which was pulling the blood glucos data off
Speaker 1: glucose monitors for Sydney and Kate. That meant either of
Speaker 1: them could watch Sydney's blood sugar from a smart watch
Speaker 1: while Sydney was in school or if she was asleep.
Speaker 1: Now Ben had hacked the pump. The final piece of
Speaker 1: the puzzle would be an algorithm. That's a script that
Speaker 1: shows a computer how to do a repetitive but complicated
Speaker 1: task like calculating insulin doses. Entered Dana Lewis. She lived
Speaker 1: since Seattle, and she has diabetes. So if I sat
Speaker 1: down to have lunch, I would be looking at a
Speaker 1: plate of food and I would have to do math
Speaker 1: to figure out how many grams of carbohydrate around the food.
Speaker 1: I'd also have to look at what my current blood
Speaker 1: glucose is, and if I had a c GM, I'd
Speaker 1: be looking at the past couple of hours trying to
Speaker 1: visually predict in my head what is the trend of
Speaker 1: my blood suger what's going to happen. I also had
Speaker 1: to look at my pump and get the information about
Speaker 1: how much insulin I already had active in my body,
Speaker 1: and so I had to combine the current glucose kind
Speaker 1: of what has happened in the past, this insulin amount,
Speaker 1: predict what I was going to happen, add in the
Speaker 1: calculation of how much food and how that was going
Speaker 1: to impact my body, and decide how much insulin do
Speaker 1: I need? And not only how much insulin do I need,
Speaker 1: but how should I time it? Dana and her partner,
Speaker 1: Scott Liebrand, decided that it would be a lot simpler
Speaker 1: to let the computer do some of that calculating, so
Speaker 1: they wrote an algorithm. At first, it would only spit
Speaker 1: out recommendations. Then they took their project to a conference
Speaker 1: and they met Ben. It was June, and we stood
Speaker 1: beside him kind of demonstrating what we've been working on,
Speaker 1: and he was demonstrating the fact that he could read
Speaker 1: and write to this metronic pump. And it actually wasn't
Speaker 1: until a few weeks or months later that another light
Speaker 1: bulb went off and we went, hey, we've got this
Speaker 1: algorithm that takes data and predicts into the future. What
Speaker 1: should happen if we combined it with his code to
Speaker 1: talk between the devices. Instead of telling the human what
Speaker 1: to do, we could actually write directly to the insulin
Speaker 1: pump and tell it to give more or less insulin.
Speaker 1: So then they had to figure out how to close
Speaker 1: the loop. They didn't start out knowing exactly what they
Speaker 1: would build, but they just started working on the problem
Speaker 1: step by step, trading the ideas back and forth. So
Speaker 1: I live in Seattle. Scott, who was then my boyfriend,
Speaker 1: lived twenty miles away in Everett, Washington, and Ben was
Speaker 1: based out of San Francisco, and so we would collaborate
Speaker 1: in a variety of ways. We would use a chat
Speaker 1: channel called getter, which is connected to at hub, where
Speaker 1: we would get on and start talking. We used Twitter, UM.
Speaker 1: We also just used phone calls where we would get
Speaker 1: on speaker phone and be programming and using the chat
Speaker 1: channel and also talking by phone. There was also times
Speaker 1: where Scott would need to go down to San Francisco
Speaker 1: for work, so he and Ben would meet up. Sometimes
Speaker 1: I would be in San Francisco. We beat up in person,
Speaker 1: you know, on nights and weekends, um, and really just
Speaker 1: kind of plucking away at Oh, we found a problem,
Speaker 1: let's resolve it. Okay, we found the next problem in
Speaker 1: the next obstacle, let's figure out how to tackle it.
Speaker 1: In December, the group finally felt like they had surmounted
Speaker 1: all of the obstacles they enough finally felt confident enough
Speaker 1: to become the first human tester for her new artificial pancreas.
Speaker 1: Originally my plan was just to test it for a
Speaker 1: couple of hours, but I was like, you know what,
Speaker 1: I really I want to go to sleep and I
Speaker 1: want to go to sleep with this thing working. And
Speaker 1: so we set up all of our backup alarms, and
Speaker 1: I went off and went to sleep with the system.
Speaker 1: And I woke up the next morning and I felt
Speaker 1: better than I ever had before, because I woke up
Speaker 1: with my blood sugar in perfect range where I wanted
Speaker 1: to be. I hadn't been low overnight, my bletcher hadn't
Speaker 1: been high overnight. I wasn't interrupted in my sleep. I
Speaker 1: didn't have to drink a juice box, I didn't have
Speaker 1: to press a button on my pump. I got ten
Speaker 1: uninterrupted hours of sleep, and it was glorious. The d
Speaker 1: i Y community was all about open source, or sharing code,
Speaker 1: so Scott, Dana, and Ben wanted to share what they
Speaker 1: learned so that others could also feel and sleep better.
Speaker 1: But it wasn't just up to them. There's also the
Speaker 1: f d A, or the Food and Drug Administration, which
Speaker 1: regulates devices in the US. They were worried that the
Speaker 1: FDA would come down on them for sharing something they'd
Speaker 1: cooked up at home. In the end, after talking to
Speaker 1: the f d A weighing the pros and cons, they
Speaker 1: decided to post their work online, with one important caveat.
Speaker 1: The people who wanted to use it would have to
Speaker 1: build it themselves first. Only if you tried it out
Speaker 1: then more and more. Kay was watching too. She was
Speaker 1: intrigued but also intimidated. It seemed very complicated to build.
Speaker 1: But then another member of the community designed a more
Speaker 1: user friendly version for the iPhone called loop In. Kate
Speaker 1: saw it in action. A friend's little boy was running
Speaker 1: around having his blood sugar automatically adjusted by the system.
Speaker 1: She started looking for the parts she needed. That same day,
Speaker 1: Medtronic had closed Ben's open door on its newer pumps,
Speaker 1: so Kate had to get a hold of an older model.
Speaker 1: Someone gave her one. Then she ordered a tiny Bluetooth
Speaker 1: equipped computer which enabled the pieces of the Loop system,
Speaker 1: so the insulin pump, the glucose monitor, the iPhone app
Speaker 1: with the algorithm to talk to each other another d
Speaker 1: I wire. A dad from Minnesota named Peach Farm had
Speaker 1: designed the device for his daughter and named it after her,
Speaker 1: calling it the Riley Link. Kate got to work. There
Speaker 1: weren't a lot of instructions to follow, but just enough.
Speaker 1: I built the app on her phone and then I
Speaker 1: set up um the spare pump and the Riley link
Speaker 1: and uh the iPhone and let it run, but not
Speaker 1: connected to Sydney. I just filled the insulin pump with
Speaker 1: water and let it drip out as if it were
Speaker 1: giving Sydney insulin. She watched on and off for hours
Speaker 1: as the pump pushed out tiny squirts of water into
Speaker 1: a napkin. Or Of course, it wasn't affecting her blood
Speaker 1: sugar at that time because it wasn't hooked up to her,
Speaker 1: but I could see the logic between behind what it
Speaker 1: was trying to do. Kate hooked Sydney up to the
Speaker 1: system on a Friday afternoon so she could keep a
Speaker 1: close eye on how it was working. It started keeping
Speaker 1: Sydney's blood sugar range without Kate having to do much
Speaker 1: of anything. All of a sudden. You know, life changed.
Speaker 1: When you're not spending all of your time worrying about diabetes,
Speaker 1: you have all this extra time in your life. Sydney
Speaker 1: stopped worrying too. I'm a teenager. I have my phone
Speaker 1: with me. All I have to do is open an app,
Speaker 1: putting my carbs, get my insulin, and keep going. It's
Speaker 1: just so much easier than having to go a whole
Speaker 1: Another level of just pulling out my pump, doing all that,
Speaker 1: clipping it back on, going back to what I was doing.
Speaker 1: Does anybody even really have to know if you're adjusting
Speaker 1: your carbs now? I mean, would anybody even realize what
Speaker 1: you're doing? No. Sometimes I'm sitting at lunch and I'm
Speaker 1: just giving insult on my phone and my friends just
Speaker 1: think I'm on my phone looking at something just like
Speaker 1: totally normal. Yeah, just to be clear, this is a
Speaker 1: d i Y hack. No pump on the commercial market
Speaker 1: lets you dose insulin from your iPhone. Yet Metronic, the
Speaker 1: world's biggest maker of insulin pumps, is watching closely. They're
Speaker 1: working on an artificial pancrease too. They have one device
Speaker 1: on the market now, but it's not as advanced. It
Speaker 1: doesn't adjust insulin for meal times like Dana System does,
Speaker 1: and it doesn't allow dosing from an iPhone like Sydney's does.
Speaker 1: What it does do is make the tiny little adjustments
Speaker 1: that happen in between meals. That's already enough to be
Speaker 1: a big advance. The device, which sells for seven thousand dollars,
Speaker 1: is going like hotcakes. So far more than one thousand
Speaker 1: people have one. But there's another big difference between d
Speaker 1: I Y systems and the equipment Metronics cells. Before its
Speaker 1: products go on the market, Metronic needs to prove to
Speaker 1: the f d A that they will be safe for
Speaker 1: every one of the thousands or sometimes millions of people
Speaker 1: who buy them. I talked to Ali d and Natty,
Speaker 1: who handles R and D in Metronics. Intensive Insulin Management
Speaker 1: Unit were regulated for a reason, to make sure that
Speaker 1: we control as many of those variables as we can
Speaker 1: and think about all the potential corner cases so that
Speaker 1: you know, any something catastrophic doesn't happen, because ultimately, these
Speaker 1: patients and families are dosing insulin, and insulin can be
Speaker 1: a very very dangerous thing. It's hard to track whether
Speaker 1: anyone was hurt while using a d I Y system.
Speaker 1: Everyone I met while reporting the story said they had
Speaker 1: never heard of anybody being seriously injured. But diabetes is
Speaker 1: a dangerous disease and the risk does exist. Some of
Speaker 1: the d I wires are working towards the same f
Speaker 1: d A seal of approval that Metronic has. Last month,
Speaker 1: an open source group called tide Pool announced that is
Speaker 1: building an FDA regulated version of Loop, which is the
Speaker 1: system that Sydney is using. The goal is to have
Speaker 1: an official product that's available on the iPhone app store
Speaker 1: and compatible with pumps that you can buy today. If
Speaker 1: they succeed, what was once a radical approach to diabetes
Speaker 1: will become perhaps mainstream. For now, though. Kate, Sydney, and
Speaker 1: the other d I wires are making do with their
Speaker 1: homemade systems, and their ranks are growing. Kate took all
Speaker 1: that time that she gained from not having to micromanage
Speaker 1: Sydney's diabetes and invested it in the d I y community.
Speaker 1: She runs a Facebook group called looped that has almost
Speaker 1: six thousand members, and she spends hours every day helping
Speaker 1: other people set up systems. Like Sydneys. Kate enjoys helping others,
Speaker 1: but she's looking forward to the day when she won't
Speaker 1: have to because an FDA approved medical device will be
Speaker 1: on the market. I would love to be put out
Speaker 1: of a job one day by a company I I
Speaker 1: don't want to do this long term. I would love
Speaker 1: everyone to get a system that works for them and
Speaker 1: right out of the box, so that we don't have
Speaker 1: to keep doing this. Kate took a big risk when
Speaker 1: she plunged into building an artificial pancreas for her daughter.
Speaker 1: She didn't have medical or high tech experience. There was
Speaker 1: always the possibility that something could go terribly wrong, but
Speaker 1: the results are really hard to argue with. Sydney is
Speaker 1: in good health and she's living her life more or
Speaker 1: less like any other well adjusted teenager, and that's been
Speaker 1: worth everything. I mean, just the fact that I can
Speaker 1: live my life normally instead of having a hundred different
Speaker 1: things to focus on, and it lowers the stress a lot.
Speaker 1: Would you ever go back to the way it was before? Oh?
Speaker 1: No way, never. And that's it for this week's prognosis.
Speaker 1: Thanks for listening. Do you have a story about healthcare
Speaker 1: in the US or around the world. We want to
Speaker 1: hear from you. You can email me at m Cortes
Speaker 1: at Bloomberg dot net or find me on Twitter at
Speaker 1: fake Cortes. If you were a fan of this episode,
Speaker 1: please take a moment to rate and review us. It
Speaker 1: helps new listeners find the show. This episode was produced
Speaker 1: by Liz Smith. Our story editor was Rick Shine. Thanks
Speaker 1: to Drew Armstrong. Francesco Levie is head of Bloomberg Podcasts.
Speaker 1: We'll see you next week.