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  • 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.

Thousands of type 1 diabetics are turning a hacking to get better blood

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B1 US insulin pancreas pump system diy blood sugar

Diabetics Are Hacking Their Own Insulin Pumps

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    joey joey posted on 2021/06/02
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