- There's a long history of people with diabetes,
having to advocate for access to our own data.
There were clinicians who thought that patients
should come to the hospital to get their blood sugar tested,
and people with diabetes shouldn't do that at home
because they might do something with the data.
- They called us rogue cowboys at first
and didn't understand
why we would possibly want to see blood sugars all the time.
- There've been a number of concerning periods in my life
where I didn't necessarily know where
my next supply of insulin would come from.
- Imagine you're driving a car
and you could only look at the speedometer four times a day.
That would be kind of what it is like living with diabetes
prior to the CGM.
(upbeat music)
Continuous glucose monitors are an incredible innovation
for people living with diabetes.
It changed how people living with diabetes
were able to monitor their blood sugar
and not just see those points in time
a half dozen times a day,
but actually see where their blood sugar was
and where their blood sugar was going.
- If you're lucky enough
to have a continuous glucose monitor,
theoretically, it has an alarm that can wake you up.
Many people, they get alarm fatigue
because they hear these alarms all day every day,
and so their brain can be less likely
to wake them up at night.
- As a mom, it's a huge worry.
Sidney would go to school and ignore all of those alarms.
She wanted diabetes to be invisible.
She wanted to be the same as all the other kids.
So, I went to the internet and I found Nightscout.
Nightscout was created by parents of children,
living with type 1 diabetes
as a way to view CGM readings remotely.
Once we had Nightscout set up,
it allowed me to have a display
that had her blood sugar on it
all the time on a little tablet,
Alexa ask Nightscout how Sydney is doing?
- 6.9 and holding as of 5 minutes ago,
- We've been able to set up a system
so that she'll wake up on her own using Nightscout.
Having access to all of her health data
is really important for her.
It's a team effort, her doctor and I,
and herself, you know,
can look at the data from Nightscout and make adjustments,
and this allowed her to be more proactive about
how she was managing her diabetes.
(upbeat music)
- I actually started OpenAPS
because I was frustrated first,
with not being able to hear the alarm
on the continuous glucose monitor,
if my blood sugar was dangerously low overnight.
I lived by myself and that was a problem for me
because my brain was very used to the alarms
and didn't think it was important enough to wake up for.
I asked the companies to make a louder CGM alarm,
and allow me to change the alarm,
and they would keep saying, we're working on it.
It's coming out in the next version.
Well, months and years passed and that didn't change,
and I thought to myself,
if I can get access to my glucose data
from my continuous glucose monitor in real time,
I could send it to the cloud and down to my phone
and use my own alarm system,
instead of relying on the physical device.
Instead of being just a reactive alarm,
we added the ability for it to predict into the future.
Then later we figured out how to communicate
with the insulin pump, and then from there,
it was very easy to close the loop,
so to speak, where the pump and the CGM would communicate
with the computer, run the data through the algorithm,
and then instead of telling me as the human what to do,
or generating an alarm to get me to take action,
they would automatically take action
by adjusting the insulin delivery on my pump.
Our goal in building the system was to build it for myself
and then share it so that one more person wanted to use it
to sleep safely at night with that same peace of mind
that I've had every night for the past six years.
(upbeat music)
- My role with Tidepool is CEO,
and I also am a dad of a young woman
living with type 1 diabetes.
Tidepool's mission is to make diabetes data
more actionable, meaningful, and accessible.
Most device makers do not openly
publish their device data protocols,
and very few devices are based on open standards,
but from a Tidepool perspective,
we feel like starting with an open source platform
has lots of benefits.
It means we can leverage the work that the community
has done. It also means
that we can openly publish the work we're doing.
There are many clinicians who are hesitant to suggest
an open source, do it yourself solution,
and there are many people living with diabetes
who are hesitant to build a solution themselves.
We were selected to be a part of the FDA
precertification pilot program.
Which means that we're coming up with new methods
for helping the FDA evaluate software as a medical device.
We sometimes like to say, we have pancreas in the game.
That's a reference to how many people working
at Tidepool are actually living with diabetes themselves
and have challenged pancreases.
But it's also testament to the fact that we attract people
who really want to do something great
for the entire diabetes community.
By building on the shoulders of the giants
and the do it yourself community,
we're able to take that incredible work,
bring it to the FDA,
eventually get FDA clearance
and then put it in the app store.
So people will be able to access Tidepool Loop
and doctors will be able to prescribe it,
knowing that it's an FDA cleared system.
(upbeat music)
- We're committed to making insulin that is absolutely
as safe and as reliable as what you get at the pharmacy now.
So we want this to be FDA approved.
We want it to go through the whole process so that people
really are comfortable using our product.
We are trying to essentially make insulin
that's very similar to the insulin
that's already on the market.
Insulin is an old, old drug.
It was discovered over 100 years ago
and it's been expressed in cells the way that we do,
since the '70s
- The price of insulin can be tremendously high,
if you don't have insurance or some other way
of getting insulin at an affordable price.
- A major study found that 25% of diabetics
are currently rationing their insulin.
- And when you do that,
you start to risk very serious complications of diabetes
that can often be fatal.
- And Open Insulin's goal is to make
the production of insulin more accessible
and put it back in the hands of the people who need it.
- The sustainability of this kind of project,
we really aim to build
the most possible open source tools
and try to get away from everything proprietary.
- There maybe all kinds of technical and other challenges
that come up along the way.
But, you know, it's entirely possible to work through them
and to get something that is, you know, second to none,
and that's exactly what we're trying to do
with the production of insulin itself.
- The position of insulin, if,
if everything works the way we want,
we probably look like a small brewery.
So when you go to your local brewery and you see
this kind of big tank, you know,
one of those big tanks can probably produce
for the whole city.
- The more we can make insulin accessible and available,
the better off it will be
to help with that management process.
Life and death medications should not
have a profit motive behind them.
Medications should be available to everybody
regardless of cost.
(upbeat music)
- This is all part of the big
open source diabetes community, where the other
open source automated insulin delivery projects
are really great examples of open source projects that
came together, regardless of geography, nothing in common,
except for wanting to make tools to help other people
make life with diabetes better.
- When we all give back, when we all pay it forward,
when we all put our code out in open source,
it helps everyone take advantage
of all of the great work that's going on.
- We feel like the more things can be open and accessible,
the more interesting and beneficial work is going to happen.
It's all in service of the public good.