November 5, 2018 • 24 mins
More than a million Americans suffer from Type 1 diabetes. The disease occurs when the pancreas mysteriously stops producing insulin, the hormone that converts food into energy. Modern medicine has been able to recreate insulin, but not the finely calibrated delivery mechanism of the pancreas. Now a group of like-minded do-it-yourselfers have gotten together on the internet and—working outside the purview of organized medicine—have figured out how to link a pump, glucose monitor and smartphone to simulate a functioning pancreas. The results have been spectacularly successful.
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Speaker 1 (00:00):
Hm hm hm. What do you do when a piece
of your body's hardware goes haywire? If you have Type
one diabetes, that damaged hardware is your pancreas. There's no
way to fix a broken pancreas, but you can build
(00:21):
a new one. Welcome to Prognosis. I'm your host, Michelle
fake Cortes. For the next eight weeks, we will be
exploring science and technology and medical research. We'll look at
how the treatments of tomorrow get into the hands of
patients who need them the most. Along the way, we'll
(00:43):
meet people living on the edge of innovation. There's the
scientist genetically engineering frogs in his garage, drug company researchers
using newly unlocked secrets of the body to cure deadly diseases.
And we'll hear about one man's quest in the desert
to turn as achedelic drug into a treatment for depression.
(01:03):
We begin our journey with the do it yourself device
that replaces one of the body's most critical organs. One
point three million Americans have Type one diabetes. That's the
most severe kind. It develops one cells in the pancreas
(01:25):
that make insulin stop working. Why it happens is still
a mystery. Insulin is the hormone that converts food into energy.
A healthy pancreas is a marvel pumping out precise amounts
of insulin at just the right time. There are dozens
of things that affect how much is made. Eating, drinking, exercising, sleeping,
you name it. It's a problem. If you don't make
(01:48):
any sugar builds up in the blood. It comes up
your organs like the kidneys in the heart and can
cause an early death. Diabetics can inject replacement insulin, but
they have to figure out how much to give and when.
Answering those two seemingly simple questions is what makes life
with diabetes miserable. You have to take on the duties
of a healthy pancreas all day, all night, three and
(02:10):
sixty five days of the year. There are tools to
help glucost monitors track blood sugar levels so people can
calculate how much insulin they need, and there are pumps
to deliver the insulin, but you have to tell it
what to do. Americans spend more than eight billion dollars
a year on these devices, but no one's been able
to get them connected and working together. To deliver the
(02:31):
right amount of insulin the way a real pancreas does.
Until now. This is a story about strangers coming together
from all over the world driven by a desperate need.
They banned it together on social media to take matters
into their own hands. Now, just to be clear, these
folks didn't build a mechanical version of the pancreas. What
(02:52):
they're actually doing is linking their insulin pumps to their
glucost monitors and getting them to work together without any
um involvement. None of this is FDA approved. Still, thousands
of people have tried it out on themselves and on
their diabetic kids, and they love it. More are signing
up every day. Here's Bloomberg's Naomi Kraski with the story.
(03:24):
Building your own pancreas can be pretty intimidating. There's software
code to install and Bluetooth and radio signals to sink
among the four electronic devices that you'll need to link together,
but there will be lots of people to help. Someone
you're likely to come across early on is a mom
from outside Toronto named Kate Farnsworth. Some people call her
(03:47):
Saint Kate because she spent so much time helping people
build their own diabetes technology. Kate lives in a quiet
suburb about an hour northwest of Toronto. She realized that
something was up with her daughter, Sydney more than six
years ago. Sydney had started drinking a lot of water
and eating a lot more than usual. I used to
(04:11):
say she was eating like a teenage boy, but she
was an eight year old girl. We used to have
to pack an extra snack after school and leaders of
extra water, and she'd cry when she ran out of water.
But even with all that extra eating, Sydney was losing weight.
Kate googled her symptoms and diabetes popped up. So I
(04:33):
took her to the family doctor and the family doctor said, well,
that's an easy test. We can just poke her finger
and see what's going on. Don't worry about it. And
the nurse poked her finger and she turned to the
other nurse and she said, it's not working. It's not
It doesn't say a number, it just says high. And
the nurse said that's because her blood sugar is too
(04:55):
high for the meter to read. And that was our
introduction to die beats. Sydney is now fifteen years old.
She still remembers how tough things were when she first
got the diagnosis. I was terrified because that's like I
was eight. I didn't want anything like this happening, and
(05:16):
it was just it was life changing. Yeah, people with
type one diabetes need to take replacement insulin, but messing
at the dosage can have catastrophic results, including going into
a coma or even dying. And figuring out how much
to take is really complicated. There are a ton of
(05:37):
things that affect blood sugar. So sleep can affect blood sugar, anxiety, adrenaline, food, stress, um, exercise,
but just basically everything affects blood sugar. Roller coasters make
her blood sugar drop, walking to school makes her blood
sugar drop. I've heard people say that boys walking by
(06:01):
and make their daughter's blood sugar go up as well.
I have not noticed that myself, but I'm not paying
that close attention. So Kate and her husband Dave were
getting up several times a night to check Sydney's blood sugar.
This is something that I heard a lot from parents
of kids with diabetes. When your kids are asleep, it's
hard for them to know when blood sugar levels are
(06:24):
dropping too low. There are these little devices called continuous
glucose monitors or cgms for short, that sound and alarm
when their readings are dipping too low. But they can
be really hard to hear, and until recently, you couldn't
tune into them from even a few rooms away. They're
also expensive. At first, Sydney didn't even have one, so
(06:48):
Dave would check Sydney's blood sugar at midnight before he
went to bed. Kate would set her alarm for three am,
when she set another alarm for six am. They were
so tie all the time. Kate thought there had to
be a better way. One day, I was googling UM,
(07:09):
researching whatever you want to call it, all things diabetes,
and I came across a blog and it had a
little girl who had a backpack with a cell phone
connected to this receiver Sydney wears, and it was broadcasting
their blood sugars to their parents. And I thought, that's
that's what I need. I need to be able to
(07:29):
see her blood sugar when she's not with me. Kay
found a group of parents who had managed to pull
data from cigns onto their smartphones and watches. This group
is called Knight Scout and it came up with the
first big d I Y advance. It helped parents track
how their kids were doing at school, at night, or
(07:50):
any other times when they weren't together. Up until that time,
you had to be within fifteen feet of the continuous
glucose monitor receiver that you received from uh dex Comm
or Metronic. This allowed you to be anywhere in the
world and still see your blood glucose values. That's Weston Nordgren,
(08:15):
a dad from Bakersfield, California. He helped start Night Scout
in a The group operates on the principle of pay
it forward. Every single family that set up that d
I Y system was supposed to help someone else figure
it out too, So they started with five families, and
what happened after that defied everyone's expectations. Within six weeks
(08:40):
of creating that group, there were one thousand, seven hundred families.
By September, there were seven thousand families. By December there
were ten thousand families. So it just exploded. So now
parents could watch their kids blood gluecoats. That was a
(09:02):
big deal, but some people were already thinking of taking
it further. The next advance would have been impossible if
not for a blunder by Metronic, the world's biggest medical
device maker, left a security gap and some of its
insulin pumps the wireless radio frequency link was open to hackers.
(09:23):
Ben West, a programmer and diabetes patient in California, found
the open back door and walked right through. I actually
don't describe it as a backdoor. Um, it's more like
the front door wasn't put on, it wasn't locked, or
it wasn't clear. No, like, there's just no door. There's
just there's just no door. What door. That explained to
(09:45):
me that there are two ways to protect against a hack.
You can make a strong defense or you can just
hide it. Try to keep the soft and vulnerable spot
a secret so it's safe. And that's the choice the
Metronic made. They designed this device. We're just gonna leave
it so that it's easy for us to test and
get out the door and ship very quickly. We'll keep
(10:08):
how it works a secret, and so we're claiming that
no one will know how it works, and since no
one knows how it works, no one will ever attack it.
That that's basically the tactic they took. Now it turns
out that you know, I came along, and I said, well,
it's on my body, and I actually need to know
how it works in order to make sure that it's
not doing the wrong thing to my body. Then started
(10:30):
the project in winter of two thousand nine. He was
already working at that point as a software engineer, and
then he got a job at a cloud computing startup.
He didn't have a whole lot of free time, so
he would take his metronic pump home with him to
his family over Christmas and New Year's and we would
spend the you know, almost the entire holiday just working
(10:52):
on this thing. You know, we would take poster paper
and start trying to figure out individual bits and bites
and the meaning of individual codes, and we would try
to dissect you know, what are these time stamps and
how are they encoding times and dates? And we would
kind of um pick these different topical areas and really
intensely attack it over the holiday period, and those were
(11:14):
usually very very productive sessions. What what we would do
is kind of form necklaces um out of these things,
so that you know, the glucoast meter plugs into a
USB cable and the USB cable goes into a computer
like a gumsticks or a raspberry pie, and then that
goes back into another USB cable that goes into another thing.
So pretty soon you've got this thing that kind of
(11:36):
twists itself around and loops around, and we would kind
of wear those around so that so that we could
continue working while moving around the house, I suppose. So
after about five years of work, Ben managed to reverse
engineer the pumps communications code. That means he figured out
(11:56):
how to tell the device what to do. Now the
d I wires had two pieces of the puzzle. They
would need to make an artificial pancreas they had night Scout,
which was pulling the blood glucos data off glucose monitors
for Sydney and Kate. That meant either of them could
watch Sydney's blood sugar from a smart watch while Sydney
was in school or if she was asleep. Now Ben
(12:20):
had hacked the pump, the final piece of the puzzle
would be an algorithm. That's a script that shows a
computer how to do a repetitive but complicated task like
calculating insulin doses. Entered Dana Lewis. She lives in Seattle
(12:41):
and she has diabetes. So if I sat down to
have lunch, I would be looking at a plate of
food and I would have to do math to figure
out how many grams of carbohydrate around the food. I'd
also have to look at what my current blood glucose is,
and if I had a c GM, I'd be looking
at the past couple of hours trying to visually predict
in my head what is the freend of my blood
suger what's going to happen. I also had to look
(13:02):
at my pump and get the information about how much
insulin I already had active in my body, and so
I had to combine the current glucose kind of what
has happened in the past, this insulin amount, predict what
I was going to happen, add in the calculation of
how much food and how that was going to impact
my body, and decide how much insulin do I need?
And not only how much insulin do I need, but
(13:23):
how should I time it. Dana and her partner, Scott Librand,
decided that it would be a lot simpler to let
the computer do some of that calculating, so they wrote
an algorithm. At first, it would only spit out recommendations.
Then they took their project to a conference and they
met Ben. It was June, and we stood beside him
(13:46):
kind of demonstrating what we've been working on, and he
was demonstrating the fact that he could read and write
to this metronic pump. And it actually wasn't until a
few weeks or months later that another light bulb went
off and we went, hey, we've got this algorithm that
takes data and predictionto the future. What should happen if
we combined it with his code to talk between the devices.
(14:07):
Instead of telling the human what to do, we could
actually write directly to the insulin pump and tell it
to give more or less insulin. So then they had
to figure out how to close the loop. They didn't
start out knowing exactly what they would build, but they
just started working on the problem step by step, trading
the ideas back and forth. So I live in Seattle, Scott,
(14:30):
who was then my boyfriend, lived twenty miles away, and Everett, Washington,
and Ben was based out of San Francisco, and so
we would collaborate in a variety of ways. We would
use a chat channel called getter, which is connected to
get hub, where we would get on and start talking.
We used Twitter. Um. We also just used phone calls
where we would get on speaker phone and be programming
and using the chat channel and also talking by phone.
(14:51):
There was also times where Scott would need to go
down to San Francisco for work, so he and Ben
would beat up. Sometimes I would be in San Francisco,
we beat up in person, you know, on nights and weekends, um,
and really just kind of plucking away at Oh, we
found a problem, let's resolve it. Okay, we found the
next problem in the next obstacle, let's figure out how
to tackle it. In December, the group finally felt like
they had surmounted all of the obstacles. They enough finally
(15:14):
felt confident enough to become the first human tester for
her new artificial pancreas. Originally my plan was just to
test it for a couple of hours, but I was like,
you know what, I really I want to go to sleep,
and I want to go to sleep with this thing working.
And so we set up all of our backup alarms
and I went off and went to sleep with the system.
And I woke up the next morning and I felt
(15:37):
better than I ever had before because I woke up
with my blood suger in perfect range where I wanted
to be. I hadn't been low overnight, my blood sager
hadn't been high overnight. I wasn't interrupted in my sleep.
I didn't have to drink a juice box. I didn't
have to press a button on my pump. I got
ten uninterrupted hours of sleep, and it was glorious. The
d i Y community was all about open source, or
(15:58):
sharing code, so Scott, Dana, and Ben wanted to share
what they learned so that others could also feel and
sleep better. But it wasn't just up to them. There's
also the f d A, or the Food and Drug Administration,
which regulates devices in the US. They were worried that
the FDA would come down on them for sharing something
they'd cooked up at home. In the end, after talking
(16:21):
to the f d A, weighing the pros and cons,
they decided to post their work online, with one important
caveat the people who wanted to use it would have
to build it themselves. First, only a few tried it out,
then more and more. Kay was watching too. She was
intrigued but also intimidated. It seemed very complicated to build.
(16:44):
But then another member of the community designed a more
user friendly version for the iPhone called Loop. In sixteen,
Kate saw it in action. A friend's little boy was
running around having his blood sugar automatically adjusted by the system.
She started looking for the parts she needed. That same day,
Medtronic had closed Ben's open door on its newer pumps,
(17:08):
so Kate had to get ahold of an older model.
Someone gave her one. Then she ordered a tiny Bluetooth
equipped computer, which enabled the pieces of the Loop system,
so the insulin pump, the glucose monitor, the iPhone app
with the algorithm to talk to each other another d
I wire. A dad from Minnesota named Peach Fomb had
(17:30):
designed the device for his daughter and named it after her,
calling it the Riley Link. Kate got to work. There
(17:50):
weren't a lot of instructions to follow, but just enough.
I built the app on her phone, and then I
set up um the spare pump and the Riley Link,
and uh the iPhone and let it run, but not
connected to Sydney. I just filled the insulin pump with
water and let it drip out as if it were
(18:14):
giving Sydney insulin. She watched on and off for hours
as the pump pushed out tiny squirts of water into
a napkin. Or of course, it wasn't affecting her blood
sugar at that time because it wasn't hooked up to her,
but I could see the logic between behind what it
was trying to do. Kate hooked Sydney up to the
system on a Friday afternoon so she could keep a
(18:36):
close eye on how it was working. It started keeping
Sydney's blood sugar in range without Kate having to do
much of anything. All of a sudden, you know, life changed.
When you're not spending all of your time worrying about diabetes,
you have all this extra time in your life. Sydney
stopped worrying too. I'm a teenager. I have my phone
(18:58):
with me Tony for seven All I have to do
is open an app, putting my carbs, get my insulin,
and keep going. It's just so much easier than having
to go a whole another level of just pulling out
my pump, doing all that cliping it back on, going
back to what I was doing. Does anybody even really
have to know if you're adjusting your carbs now? I mean,
(19:22):
would anybody even realize what you're doing. No. Sometimes I'm
sitting at lunch and I'm just giving insulin on my
phone and my friends just think I'm on my phone
looking at something just like totally normal. Yeah, just to
be clear, this is a d I Y hack. No
(19:44):
pump on the commercial market. Let's you dose insulin from
your iPhone. Yet. Metronic, the world's biggest maker of insulin pumps,
is watching closely. They're working on an artificial pancrease too.
They have one device on the market now. The it's
not as advanced. It doesn't adjust insulin for meal times
like Dana system does, and it doesn't allow dos thing
(20:07):
from an iPhone like Sydney's does. What it does do
is make the tiny little adjustments that happen in between meals.
That's already enough to be a big advance. The device,
which sells for seven thousand dollars, is going like hotcakes.
So far, more than one thousand people have one. But
(20:28):
there's another big difference between d I Y Systems and
the equipment Metronics cells. Before its products go on the market,
Metronic needs to prove to the f d A that
they will be safe for every one of the thousands
or sometimes millions of people who buy them. I talked
to Ali d and Natty, who handles R and D
in Metronics Intensive Insulin Management Unit. We're regulated for a reason,
(20:53):
to make sure that we control as many of those
variables as we can and think about all the potential
corner cases so that you know, any something catastrophic doesn't happen,
because ultimately these patients and families are dosing insulin, and
insulin can be a very, very dangerous thing. It's hard
(21:14):
to track whether anyone was hurt while using a d
I Y system. Everyone I met while reporting the story
said they had never heard of anybody being seriously injured.
But diabetes is a dangerous disease and the risk does exist.
Some of the d I wires are working towards the
same f d A seal of approval that Metronic has.
(21:36):
Last month, an open source group called tide Pool announced
that it is building an FDA regulated version of LOOP,
which is the system that Sydney is using. The goal
is to have an official product that's available on the
iPhone app store and compatible with pumps that you can
buy today. If they succeed. What was once a radical
(21:58):
approach to diabetes will come perhaps mainstream for now, though, Kate, Sydney,
and the other d I wires are making do with
their homemade systems and their ranks are growing. Kate took
all that time that she gained from not having to
micromanaged Sydney's diabetes and invested it in the d I
(22:19):
y community. She runs a Facebook group called looped that
has almost six thousand members, and she spends hours every
day helping other people set up systems like Sydneys. Kate
enjoys helping others, but she's looking forward to the day
when she won't have to because an FDA approved medical
device will be on the market. I would love to
(22:44):
be put out of a job one day by a
company I I don't want to do this long term.
I would love everyone to get a system that works
for them and right out of the box, so that
we don't have to keep doing this. Kate took a
big risk when she plunged into building an artificial pancreas
(23:04):
for her daughter. She didn't have medical or high tech experience.
There was always the possibility that something could go terribly wrong,
but the results are really hard to argue with. Sydney
is in good health, and she's living her life more
or less like any other well adjusted teenager. And that's
been worth everything. I mean, just the fact that I
(23:29):
can live my life normally instead of having a hundred
different things to focus on, and it lowers the stress
a lot. Would you ever go back to the way
it was before? Oh? No, way, never. And that's it
(23:59):
for this week's Arognosis. Thanks for listening. Do you have
a story about healthcare in the US or around the world.
We want to hear from you. You can email me
at m Cortes at Bloomberg dot net or find me
on Twitter at fay Cortes. If you were a fan
of this episode, please take a moment to rate and
review us. It helps new listeners find the show. This
(24:22):
episode was produced by Liz Smith. Our story editor was
Rick Shine. Thanks to Drew Armstrong. Francesco leabe is, head
of Bloomberg Podcasts. We'll see you next week.
Hm hm hm. What do you do when a piece
of your body's hardware goes haywire? If you have Type
one diabetes, that damaged hardware is your pancreas. There's no
way to fix a broken pancreas, but you can build
(00:21):
a new one. Welcome to Prognosis. I'm your host, Michelle
fake Cortes. For the next eight weeks, we will be
exploring science and technology and medical research. We'll look at
how the treatments of tomorrow get into the hands of
patients who need them the most. Along the way, we'll
(00:43):
meet people living on the edge of innovation. There's the
scientist genetically engineering frogs in his garage, drug company researchers
using newly unlocked secrets of the body to cure deadly diseases.
And we'll hear about one man's quest in the desert
to turn as achedelic drug into a treatment for depression.
(01:03):
We begin our journey with the do it yourself device
that replaces one of the body's most critical organs. One
point three million Americans have Type one diabetes. That's the
most severe kind. It develops one cells in the pancreas
(01:25):
that make insulin stop working. Why it happens is still
a mystery. Insulin is the hormone that converts food into energy.
A healthy pancreas is a marvel pumping out precise amounts
of insulin at just the right time. There are dozens
of things that affect how much is made. Eating, drinking, exercising, sleeping,
you name it. It's a problem. If you don't make
(01:48):
any sugar builds up in the blood. It comes up
your organs like the kidneys in the heart and can
cause an early death. Diabetics can inject replacement insulin, but
they have to figure out how much to give and when.
Answering those two seemingly simple questions is what makes life
with diabetes miserable. You have to take on the duties
of a healthy pancreas all day, all night, three and
(02:10):
sixty five days of the year. There are tools to
help glucost monitors track blood sugar levels so people can
calculate how much insulin they need, and there are pumps
to deliver the insulin, but you have to tell it
what to do. Americans spend more than eight billion dollars
a year on these devices, but no one's been able
to get them connected and working together. To deliver the
(02:31):
right amount of insulin the way a real pancreas does.
Until now. This is a story about strangers coming together
from all over the world driven by a desperate need.
They banned it together on social media to take matters
into their own hands. Now, just to be clear, these
folks didn't build a mechanical version of the pancreas. What
(02:52):
they're actually doing is linking their insulin pumps to their
glucost monitors and getting them to work together without any
um involvement. None of this is FDA approved. Still, thousands
of people have tried it out on themselves and on
their diabetic kids, and they love it. More are signing
up every day. Here's Bloomberg's Naomi Kraski with the story.
(03:24):
Building your own pancreas can be pretty intimidating. There's software
code to install and Bluetooth and radio signals to sink
among the four electronic devices that you'll need to link together,
but there will be lots of people to help. Someone
you're likely to come across early on is a mom
from outside Toronto named Kate Farnsworth. Some people call her
(03:47):
Saint Kate because she spent so much time helping people
build their own diabetes technology. Kate lives in a quiet
suburb about an hour northwest of Toronto. She realized that
something was up with her daughter, Sydney more than six
years ago. Sydney had started drinking a lot of water
and eating a lot more than usual. I used to
(04:11):
say she was eating like a teenage boy, but she
was an eight year old girl. We used to have
to pack an extra snack after school and leaders of
extra water, and she'd cry when she ran out of water.
But even with all that extra eating, Sydney was losing weight.
Kate googled her symptoms and diabetes popped up. So I
(04:33):
took her to the family doctor and the family doctor said, well,
that's an easy test. We can just poke her finger
and see what's going on. Don't worry about it. And
the nurse poked her finger and she turned to the
other nurse and she said, it's not working. It's not
It doesn't say a number, it just says high. And
the nurse said that's because her blood sugar is too
(04:55):
high for the meter to read. And that was our
introduction to die beats. Sydney is now fifteen years old.
She still remembers how tough things were when she first
got the diagnosis. I was terrified because that's like I
was eight. I didn't want anything like this happening, and
(05:16):
it was just it was life changing. Yeah, people with
type one diabetes need to take replacement insulin, but messing
at the dosage can have catastrophic results, including going into
a coma or even dying. And figuring out how much
to take is really complicated. There are a ton of
(05:37):
things that affect blood sugar. So sleep can affect blood sugar, anxiety, adrenaline, food, stress, um, exercise,
but just basically everything affects blood sugar. Roller coasters make
her blood sugar drop, walking to school makes her blood
sugar drop. I've heard people say that boys walking by
(06:01):
and make their daughter's blood sugar go up as well.
I have not noticed that myself, but I'm not paying
that close attention. So Kate and her husband Dave were
getting up several times a night to check Sydney's blood sugar.
This is something that I heard a lot from parents
of kids with diabetes. When your kids are asleep, it's
hard for them to know when blood sugar levels are
(06:24):
dropping too low. There are these little devices called continuous
glucose monitors or cgms for short, that sound and alarm
when their readings are dipping too low. But they can
be really hard to hear, and until recently, you couldn't
tune into them from even a few rooms away. They're
also expensive. At first, Sydney didn't even have one, so
(06:48):
Dave would check Sydney's blood sugar at midnight before he
went to bed. Kate would set her alarm for three am,
when she set another alarm for six am. They were
so tie all the time. Kate thought there had to
be a better way. One day, I was googling UM,
(07:09):
researching whatever you want to call it, all things diabetes,
and I came across a blog and it had a
little girl who had a backpack with a cell phone
connected to this receiver Sydney wears, and it was broadcasting
their blood sugars to their parents. And I thought, that's
that's what I need. I need to be able to
(07:29):
see her blood sugar when she's not with me. Kay
found a group of parents who had managed to pull
data from cigns onto their smartphones and watches. This group
is called Knight Scout and it came up with the
first big d I Y advance. It helped parents track
how their kids were doing at school, at night, or
(07:50):
any other times when they weren't together. Up until that time,
you had to be within fifteen feet of the continuous
glucose monitor receiver that you received from uh dex Comm
or Metronic. This allowed you to be anywhere in the
world and still see your blood glucose values. That's Weston Nordgren,
(08:15):
a dad from Bakersfield, California. He helped start Night Scout
in a The group operates on the principle of pay
it forward. Every single family that set up that d
I Y system was supposed to help someone else figure
it out too, So they started with five families, and
what happened after that defied everyone's expectations. Within six weeks
(08:40):
of creating that group, there were one thousand, seven hundred families.
By September, there were seven thousand families. By December there
were ten thousand families. So it just exploded. So now
parents could watch their kids blood gluecoats. That was a
(09:02):
big deal, but some people were already thinking of taking
it further. The next advance would have been impossible if
not for a blunder by Metronic, the world's biggest medical
device maker, left a security gap and some of its
insulin pumps the wireless radio frequency link was open to hackers.
(09:23):
Ben West, a programmer and diabetes patient in California, found
the open back door and walked right through. I actually
don't describe it as a backdoor. Um, it's more like
the front door wasn't put on, it wasn't locked, or
it wasn't clear. No, like, there's just no door. There's
just there's just no door. What door. That explained to
(09:45):
me that there are two ways to protect against a hack.
You can make a strong defense or you can just
hide it. Try to keep the soft and vulnerable spot
a secret so it's safe. And that's the choice the
Metronic made. They designed this device. We're just gonna leave
it so that it's easy for us to test and
get out the door and ship very quickly. We'll keep
(10:08):
how it works a secret, and so we're claiming that
no one will know how it works, and since no
one knows how it works, no one will ever attack it.
That that's basically the tactic they took. Now it turns
out that you know, I came along, and I said, well,
it's on my body, and I actually need to know
how it works in order to make sure that it's
not doing the wrong thing to my body. Then started
(10:30):
the project in winter of two thousand nine. He was
already working at that point as a software engineer, and
then he got a job at a cloud computing startup.
He didn't have a whole lot of free time, so
he would take his metronic pump home with him to
his family over Christmas and New Year's and we would
spend the you know, almost the entire holiday just working
(10:52):
on this thing. You know, we would take poster paper
and start trying to figure out individual bits and bites
and the meaning of individual codes, and we would try
to dissect you know, what are these time stamps and
how are they encoding times and dates? And we would
kind of um pick these different topical areas and really
intensely attack it over the holiday period, and those were
(11:14):
usually very very productive sessions. What what we would do
is kind of form necklaces um out of these things,
so that you know, the glucoast meter plugs into a
USB cable and the USB cable goes into a computer
like a gumsticks or a raspberry pie, and then that
goes back into another USB cable that goes into another thing.
So pretty soon you've got this thing that kind of
(11:36):
twists itself around and loops around, and we would kind
of wear those around so that so that we could
continue working while moving around the house, I suppose. So
after about five years of work, Ben managed to reverse
engineer the pumps communications code. That means he figured out
(11:56):
how to tell the device what to do. Now the
d I wires had two pieces of the puzzle. They
would need to make an artificial pancreas they had night Scout,
which was pulling the blood glucos data off glucose monitors
for Sydney and Kate. That meant either of them could
watch Sydney's blood sugar from a smart watch while Sydney
was in school or if she was asleep. Now Ben
(12:20):
had hacked the pump, the final piece of the puzzle
would be an algorithm. That's a script that shows a
computer how to do a repetitive but complicated task like
calculating insulin doses. Entered Dana Lewis. She lives in Seattle
(12:41):
and she has diabetes. So if I sat down to
have lunch, I would be looking at a plate of
food and I would have to do math to figure
out how many grams of carbohydrate around the food. I'd
also have to look at what my current blood glucose is,
and if I had a c GM, I'd be looking
at the past couple of hours trying to visually predict
in my head what is the freend of my blood
suger what's going to happen. I also had to look
(13:02):
at my pump and get the information about how much
insulin I already had active in my body, and so
I had to combine the current glucose kind of what
has happened in the past, this insulin amount, predict what
I was going to happen, add in the calculation of
how much food and how that was going to impact
my body, and decide how much insulin do I need?
And not only how much insulin do I need, but
(13:23):
how should I time it. Dana and her partner, Scott Librand,
decided that it would be a lot simpler to let
the computer do some of that calculating, so they wrote
an algorithm. At first, it would only spit out recommendations.
Then they took their project to a conference and they
met Ben. It was June, and we stood beside him
(13:46):
kind of demonstrating what we've been working on, and he
was demonstrating the fact that he could read and write
to this metronic pump. And it actually wasn't until a
few weeks or months later that another light bulb went
off and we went, hey, we've got this algorithm that
takes data and predictionto the future. What should happen if
we combined it with his code to talk between the devices.
(14:07):
Instead of telling the human what to do, we could
actually write directly to the insulin pump and tell it
to give more or less insulin. So then they had
to figure out how to close the loop. They didn't
start out knowing exactly what they would build, but they
just started working on the problem step by step, trading
the ideas back and forth. So I live in Seattle, Scott,
(14:30):
who was then my boyfriend, lived twenty miles away, and Everett, Washington,
and Ben was based out of San Francisco, and so
we would collaborate in a variety of ways. We would
use a chat channel called getter, which is connected to
get hub, where we would get on and start talking.
We used Twitter. Um. We also just used phone calls
where we would get on speaker phone and be programming
and using the chat channel and also talking by phone.
(14:51):
There was also times where Scott would need to go
down to San Francisco for work, so he and Ben
would beat up. Sometimes I would be in San Francisco,
we beat up in person, you know, on nights and weekends, um,
and really just kind of plucking away at Oh, we
found a problem, let's resolve it. Okay, we found the
next problem in the next obstacle, let's figure out how
to tackle it. In December, the group finally felt like
they had surmounted all of the obstacles. They enough finally
(15:14):
felt confident enough to become the first human tester for
her new artificial pancreas. Originally my plan was just to
test it for a couple of hours, but I was like,
you know what, I really I want to go to sleep,
and I want to go to sleep with this thing working.
And so we set up all of our backup alarms
and I went off and went to sleep with the system.
And I woke up the next morning and I felt
(15:37):
better than I ever had before because I woke up
with my blood suger in perfect range where I wanted
to be. I hadn't been low overnight, my blood sager
hadn't been high overnight. I wasn't interrupted in my sleep.
I didn't have to drink a juice box. I didn't
have to press a button on my pump. I got
ten uninterrupted hours of sleep, and it was glorious. The
d i Y community was all about open source, or
(15:58):
sharing code, so Scott, Dana, and Ben wanted to share
what they learned so that others could also feel and
sleep better. But it wasn't just up to them. There's
also the f d A, or the Food and Drug Administration,
which regulates devices in the US. They were worried that
the FDA would come down on them for sharing something
they'd cooked up at home. In the end, after talking
(16:21):
to the f d A, weighing the pros and cons,
they decided to post their work online, with one important
caveat the people who wanted to use it would have
to build it themselves. First, only a few tried it out,
then more and more. Kay was watching too. She was
intrigued but also intimidated. It seemed very complicated to build.
(16:44):
But then another member of the community designed a more
user friendly version for the iPhone called Loop. In sixteen,
Kate saw it in action. A friend's little boy was
running around having his blood sugar automatically adjusted by the system.
She started looking for the parts she needed. That same day,
Medtronic had closed Ben's open door on its newer pumps,
(17:08):
so Kate had to get ahold of an older model.
Someone gave her one. Then she ordered a tiny Bluetooth
equipped computer, which enabled the pieces of the Loop system,
so the insulin pump, the glucose monitor, the iPhone app
with the algorithm to talk to each other another d
I wire. A dad from Minnesota named Peach Fomb had
(17:30):
designed the device for his daughter and named it after her,
calling it the Riley Link. Kate got to work. There
(17:50):
weren't a lot of instructions to follow, but just enough.
I built the app on her phone, and then I
set up um the spare pump and the Riley Link,
and uh the iPhone and let it run, but not
connected to Sydney. I just filled the insulin pump with
water and let it drip out as if it were
(18:14):
giving Sydney insulin. She watched on and off for hours
as the pump pushed out tiny squirts of water into
a napkin. Or of course, it wasn't affecting her blood
sugar at that time because it wasn't hooked up to her,
but I could see the logic between behind what it
was trying to do. Kate hooked Sydney up to the
system on a Friday afternoon so she could keep a
(18:36):
close eye on how it was working. It started keeping
Sydney's blood sugar in range without Kate having to do
much of anything. All of a sudden, you know, life changed.
When you're not spending all of your time worrying about diabetes,
you have all this extra time in your life. Sydney
stopped worrying too. I'm a teenager. I have my phone
(18:58):
with me Tony for seven All I have to do
is open an app, putting my carbs, get my insulin,
and keep going. It's just so much easier than having
to go a whole another level of just pulling out
my pump, doing all that cliping it back on, going
back to what I was doing. Does anybody even really
have to know if you're adjusting your carbs now? I mean,
(19:22):
would anybody even realize what you're doing. No. Sometimes I'm
sitting at lunch and I'm just giving insulin on my
phone and my friends just think I'm on my phone
looking at something just like totally normal. Yeah, just to
be clear, this is a d I Y hack. No
(19:44):
pump on the commercial market. Let's you dose insulin from
your iPhone. Yet. Metronic, the world's biggest maker of insulin pumps,
is watching closely. They're working on an artificial pancrease too.
They have one device on the market now. The it's
not as advanced. It doesn't adjust insulin for meal times
like Dana system does, and it doesn't allow dos thing
(20:07):
from an iPhone like Sydney's does. What it does do
is make the tiny little adjustments that happen in between meals.
That's already enough to be a big advance. The device,
which sells for seven thousand dollars, is going like hotcakes.
So far, more than one thousand people have one. But
(20:28):
there's another big difference between d I Y Systems and
the equipment Metronics cells. Before its products go on the market,
Metronic needs to prove to the f d A that
they will be safe for every one of the thousands
or sometimes millions of people who buy them. I talked
to Ali d and Natty, who handles R and D
in Metronics Intensive Insulin Management Unit. We're regulated for a reason,
(20:53):
to make sure that we control as many of those
variables as we can and think about all the potential
corner cases so that you know, any something catastrophic doesn't happen,
because ultimately these patients and families are dosing insulin, and
insulin can be a very, very dangerous thing. It's hard
(21:14):
to track whether anyone was hurt while using a d
I Y system. Everyone I met while reporting the story
said they had never heard of anybody being seriously injured.
But diabetes is a dangerous disease and the risk does exist.
Some of the d I wires are working towards the
same f d A seal of approval that Metronic has.
(21:36):
Last month, an open source group called tide Pool announced
that it is building an FDA regulated version of LOOP,
which is the system that Sydney is using. The goal
is to have an official product that's available on the
iPhone app store and compatible with pumps that you can
buy today. If they succeed. What was once a radical
(21:58):
approach to diabetes will come perhaps mainstream for now, though, Kate, Sydney,
and the other d I wires are making do with
their homemade systems and their ranks are growing. Kate took
all that time that she gained from not having to
micromanaged Sydney's diabetes and invested it in the d I
(22:19):
y community. She runs a Facebook group called looped that
has almost six thousand members, and she spends hours every
day helping other people set up systems like Sydneys. Kate
enjoys helping others, but she's looking forward to the day
when she won't have to because an FDA approved medical
device will be on the market. I would love to
(22:44):
be put out of a job one day by a
company I I don't want to do this long term.
I would love everyone to get a system that works
for them and right out of the box, so that
we don't have to keep doing this. Kate took a
big risk when she plunged into building an artificial pancreas
(23:04):
for her daughter. She didn't have medical or high tech experience.
There was always the possibility that something could go terribly wrong,
but the results are really hard to argue with. Sydney
is in good health, and she's living her life more
or less like any other well adjusted teenager. And that's
been worth everything. I mean, just the fact that I
(23:29):
can live my life normally instead of having a hundred
different things to focus on, and it lowers the stress
a lot. Would you ever go back to the way
it was before? Oh? No, way, never. And that's it
(23:59):
for this week's Arognosis. Thanks for listening. Do you have
a story about healthcare in the US or around the world.
We want to hear from you. You can email me
at m Cortes at Bloomberg dot net or find me
on Twitter at fay Cortes. If you were a fan
of this episode, please take a moment to rate and
review us. It helps new listeners find the show. This
(24:22):
episode was produced by Liz Smith. Our story editor was
Rick Shine. Thanks to Drew Armstrong. Francesco leabe is, head
of Bloomberg Podcasts. We'll see you next week.
Host
Jason Gale
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