Diabetes DIY: why thousands of people are hacking their insulin pumps

Thousands of people around the world with Type 1 diabetes are hacking into their medical equipment with instructions they found online. Some say it’s giving them a peace of mind they never had before.

Edmonton’s Jonathan Garfinkel started “looping,” as it’s called, about two years ago after meeting other “loopers.”

Despite having no background in computer science, the writer and humanities PhD student managed to create an automated system to control his blood sugar levels.

“I was terrified at the thought of [looping]… I was overwhelmed by it,” the 46-year-old told Global News.

A “loop” is a system in which a continuous glucose monitor (CGM) can “talk” to an insulin pump via a smartphone app. Currently, the two wearable blood sugar control devices are not linked, which means the person must constantly adjust their insulin doses according to readings from the monitor.

Looping allows the CGM to tell the pump how much insulin the person needs, then the pump automatically administers that dose.

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It requires hacking into an older pump (the new ones can’t be hacked) and using a device called a Rileylink ($150 USD), which converts the signals from the CGM into readable information for the pump through the smartphone.

“The first 24 hours were like, ‘Oh my god, I can’t believe what I’ve done,’” said Garfinkel.

“Within a week, it was off to the races. I haven’t looked back.”

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Garfinkel says his blood sugar levels have never been more stable. He used to wake up with a “low” about once a week. Now he says that’s rare. But he still has to adjust the pump before meals and exercise.

“It’s not like you forget about everything with the loop and then you go on with your day,” said Garfinkel. “You keep an eye on things.”

There is, of course, the danger of malfunction. Too much or too little insulin can lead to a diabetic coma, even death.

The U.S. Food and Drug Administration issued a warning in 2019 about a “serious adverse event” in which one looper required medical attention.

Dr. Peter Senior, an endocrinologist with the University of Alberta, says people with Type 1 diabetes are simply accustomed to risk.

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“I don’t know many other conditions where I give people the drug to treat it and say: ‘Make up your own mind about how to take it,’” said Senior.

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“‘And, if you stop taking it, you could die, and if you take too much, you could die, and you have to live your life trying to balance on this tightrope.’”

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Senior knows about 10 loopers, including two doctors. He understands why they do it.

“The status quo is not awesome and I would like the lives of people with diabetes to be better.

“If they can achieve that, I’m not in a position to judge or criticize.”

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Similar “artificial pancreas” technologies do exist, like the Medtronic MiniMed 670G, which was approved in Canada in 2018, but the cost can be prohibitive. Other technologies are still years away from being approved for market.

That’s why the hashtag for the 20,000-member Looped Facebook support group is #wearenotwaiting.

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“Things need to change at a government and legislative level that we haven’t figured out yet,” said Garfinkel.

Garfinkel’s DIY loop has had a few minor malfunctions, but after 35 years of insulin dosing guesswork, he doesn’t mind.

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“[Loop] has the effect of improving your blood sugar numbers, and also just easing your anxiety, which is actually kind of amazing.”

A U.S. group is now in talks with the FDA about making Loop an official app for market.

© 2020 Global News, a division of Corus Entertainment Inc.

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