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