Thousands of type 1 diabetics are turning a hacking to get better blood
sugar control. I mean a cure in 50 years is not going to help me. I need this now.
This is an insulin pump. No, it's not a beeper. It's a device that type 1
diabetics, like myself, use to keep themselves alive. Type 1 diabetes is a
disease that affects over 1.2 million Americans, where your pancreas does not
produce any insulin, which is what regulates blood sugar. So we have to
inject it using needles or a pump. Managing blood sugars is difficult and
time consuming. I have to manually adjust my insulin levels all day and night.
But a few years ago people figured out how to hack into some insulin pumps and turn
them into artificial pancreas, which automatically adjust insulin levels as
needed. Instead of the blood sugar going like this, the insulin is going like this.
Sugar line is smoother and steadier. The Pressnall family decided to make a
do-it-yourself artificial pancreas for their twelve-year-old daughter, Ella.
After having to wake up multiple times a night to make sure her blood sugar was
at a safe level. Pizza for us was a three or four time up in the middle of the
night taking care of Ella a kind of situation. It was so exciting for me to see the
OpenAPS make adjustments to her basal. There using the Open Artificial Pancreas System
It's a free, open-source project that aims to make basic artificial
pancreas system technology available to everyone.
OpenAPS and the Loop app are systems that you can build on your own, for as
little as $150. When you see the basal insulin getting
adjusted like this and you see that in the course of the day that happened like
300 times, those are three hundred decisions that you didn't have to make
to keep somebody safe. I'd rather push that on to a computer that can do that
then then myself. Here's how it works. The app hits your blood sugar number
from the continuous glucose monitor and decides to increase or decrease insulin.
The mini computer then converts the phone's Bluetooth to a radio signal so
the pump can receive the command. The pump then automatically gives insulin,
creating a closed-loop system, or what many call an artificial pancreas.
I had to try this out for myself but I was still nervous to let my pump
automatically give me insulin. So I called Dr. Earl Hirsch, who is a diabetes
expert. He has two patients who are DIY looping. The cons are that it is still
relatively new. It has not been formally tested by the FDA. We're using old
insulin pumps as a rule of thumb, usually well past their expiration. Having said
that I personally don't know of any major problems that have occurred.
Mostly what I am hearing is people are extremely happy with their results.
So I ordered all the equipment, built the system and gave it a try.
The first night was pretty nerve-racking. Sleeping can be a tough time for people with diabetes
because you can't feel low blood sugars in your sleep but the results were
amazing. Every five minutes the system adjusted the amount of insulin I was
getting and gave me a perfectly smooth graph. So here's what my blood Sugar's
used to look like overnight before I hack my pump. And this is what they look
like now. But there is a catch to this technology. The only reason this is
possible is because a flaw was found in older Medtronic pumps that allow you to
send external commands to the device. but Medtronic fix this flaw in its newer pumps
and last year came out with a pump that works very similar to the hack system
that I'd built. But unlike the DIY pancreas, this one is approved by the FDA.
So we actually work with the FDA on an accelerated timeline in order to bring
these hybrid closed-loop system to the market. The new pump platform was with
the FDA for about a year and a half. The hybrid closed loop system was with the
FDA for less than 100 days and so we were able to get that system out with
cooperation with the FDA actually quite quickly. The 670G became available in
2017, two years after many had already started doing it on their own.
The company warned against using the hack system. It's almost like modifying your
car, right? If you're going to take a personal risk to say this isn't
regulated but I'm going to set it up, I'm gonna pick whatever settings and
whatever happens, happens, then obviously without that risk that
has flexibilities that are allowed. Medtronics is over 120,000 patients using
the 670G system. So why hasn't everyone using a DIY system switched over to the
FDA-approved one. For one, it cost about seven thousand dollars if you don't have
insurance and children under the age of seven can't use the 670G. Plus, some
people just like the DIY system because it's so customizable. We have the ability
to move the features and make adjustments to the system very, very
quickly. The types of clinical trials, so to speak, that we're able to do as a DIY
group is infinitely flexible and very responsive to the needs of the actual
users. This is what led a former Amazon software VP to start a non-profit to
help people manage their diabetes. Now the company is on track to get this hack
system approved by the FDA. 2011, our daughter Katie was diagnosed with type 1
diabetes and I just couldn't believe how painfully terrible all of the software
that came with her devices was. It was really crazy and I thought to myself
this is ridiculous. Why doesn't somebody do something about it? There are a lot of
people who are just nervous about building their own system. And we feel
like you should be able to go to the App Store, download an app that you know is
safe and effective. Tidepool's app will fix the flaws and give the DIY
artificial pancreas direct communication to your pump. He couldn't tell me which
manufacturers I'll be working with but the hope is that diabetics could choose
any pump they wanted. As opposed to this old 2007 Medtronic's pump that I've been
using. They're also several other companies with their own systems on the
horizon. Many of which are expected in 2019 and 2020.
I've been using the hack system for a few weeks now and I don't plan on
stopping. My blood sugars are the best that they've ever been and it's required
less effort from me to get them that way. But the system still isn't perfect.
I have to carry around even more equipment than I used to, I still have to give
myself insulin for meals and anytime there's a problem I really don't know
how to fix it. That being said the positives far outweigh the negatives so
I plan to keep using this hack system until a better option is available.