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.