Diabetics Are Hacking Their Own Insulin Pumps

Diabetics Are Hacking Their Own Insulin Pumps

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.

100 Replies to “Diabetics Are Hacking Their Own Insulin Pumps”

  1. Wish they had this when I was growing up. Now I’m older and have suffered a lot of negative effects from the diabetes.

    Also no insurance right now either but this is definitely a budget friendly option.

  2. This is amazing but I have the newest one but it was said that she could not feel lows I often have dreams about being low when i an at night

  3. Its so sad that MEDICAL CARE is so expensive that most people cant afford to have LIFE SAVING medication and equipment…this is why big pharma needs to be taken down….there are so many examples of healthcare in other nations that is FAR better than what we have in the U.S……i have seizures but can't afford to get properly diagnosed with whatever i have(they are grand mal 90% of the time) and it scares me that i could be walking with my family and then just cease to exist…..

  4. "It's almost like modifying your car."

    You mean like how car guys mod their cars to have more horsepower and/or run at increased fuel efficiency, therefore catering their property to their specific needs? Yeah, real dangerous.

  5. Big Pharma is inadvertently creating more tech savvy patients that will be further weened off the FDA’s teet. 🤣Good job thanks

  6. damn. My mum & sister just have OmniPods and I can't remember the other things name but it means they can scan their arm and it tells them their blood sugar.

  7. My uncle is a type 1 diabetic. His pump is automatic and regularly injects him. The technology is out so don’t worry

  8. This could actually be very useful for me so thx for this video 😀
    Also the pump showed on screen at 3:38 is the pump that I have :p

  9. Medtronic sells these pumps for $4000 sd they programme it to die 5 months after warranty expires… I hope companies like these burn in hell

  10. Imagine where mankind would be if there was an international law requiring All software to be open source.

  11. Alright ladies and gentlemen let’s start hacking and pumping… seriously does the app have high security.

  12. How is it that more people haven’t talked about this? Personally I don’t have diabetes but I feel like very little people have heard about this

  13. yall actin like the big companies cant already do this…. it needs to be so fool proof because being overdosed with insulin just like any other drug. dont clown

  14. Unless you have diabetes type 1 you don't need insuline, you need to do Omad (24 hours fasting) and stop eating fast carbs, that is almost all you need.

  15. Hi I am a type 1 diabetic I got diagnosed 12 weeks ago my blood sugers were 24.8 and ketons were 6.6 and got into blue lights

  16. I think most people have automatic insulin pumps. im not diabetic tho but everybody I know that is diabetic has one

  17. or youst stop eating fatty sugary things over multiple generations if there is no problem there isnt any solution required

  18. “What ever happens, happens” me at 3 am at 356 giving myself like 20 units cause I keep dosing and it does nothing so whatever happens happens.🤷🏽‍♀️

  19. Just got tslim X2 paid $100 for co pay and picked it up and looked at how much it cost i was floored,$11,995.i was like good god

  20. It's only 7000 if you don't have health insurance. 1st off 2nd if you have diabetes and you don't have health insurance wtf is wrong with you. Dont sit there and complain about this do your damn part and get covered

  21. The Medtronic 670G is a major POS! I hate it. The CGM is horrible. It is bulky, vibrating all the time (annoying warnings), command settings are buried, and it is poorly designed. The reps are aggressive and not helpful once you get sucked in. I am waiting for my warranty to be over and will never have another Medtronic pump or CGM.

  22. She compared a 24hr Dexcom view to a 6hr view. You should show us 2 of the same time periods to prove the proposed glucose control/stability. Come on now, how did CNBC approve this? Dis-info for sure

  23. I'm nearly setup but I'm on an Android and no software like yours! Nice video explaining it the Iphone way I just need tips on the Android way 🙂

  24. This only works with Medtronic's models before the 530g using original firmware. But Medtronic has replaced them with their own closed loop 670g pump, which is pretty ugly, both the device and the interface, really shows they don't care due to outlasting competition and having global dominance. It also only works with their own CGM system and it's considered quite a bit less accurate than the leading CGM, Dexcom. An alternative is Tandem's closed loop system, "Basal-IQ" which is their t:slim x2 coupled with Dexcom. I think that's it in the US? Afaik, Omnipod doesn't have an official closed loop system yet. Animas is now out of business.

  25. In my country, you rent the pump on a weekly basis and the insurance pays for it. The maintenance is done by the pharmacy…🤔🤔

  26. What kind of moron compares the insulin pump to modifying a car….? The VP trying to sell you something that costs a stupid amount.

  27. Call it what you will, but I firmly believe the cures for diabetes, cancer etc. will never see the light of day… I've been a T1D since I was 1, and the running joke has been that a cure is "5-10 years away". What bs! I've heard diabetics of 50 years hear the same crap back when they were diagnosed! Cures exist, but the only time we'll see them is if either it's more profitable for the pharma companies to do so, or their stronghold on the system is smashed. Pray either happens!

  28. As some of us we become part-machine we cannot allow the government or companies to monopolize control over our modified selves. we have to take control of this now. I'm not talking about artificial-heart-hackathon-wednesdays… Just the right to repair, modify, and configure ourselves, like this amazing project!

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