Writing for The Walrus, lifelong diabetic Jonathan Garfinkel explores a world where the hackers, not the scientists, are forging ahead with advances in diabetes management.
Monitoring Type One diabetes is a full-time job — a constant juggling act of how much insulin to take when blood glucose goes too high, and how much sugar to consume when it goes too low. A misjudgment means feeling terrible, slipping into a coma, or even dying. Essentially, a diabetic has to manually do the job normally performed by a pancreas — but some ingenious coding has created a shortcut on the road to creating an “artificial pancreas.”
“Artificial pancreas” isn’t a term I’d heard before. I ask Riddell to explain. “So, you have your insulin pump and your continuous glucose monitor,” he says. “Great technology. But these devices don’t talk to each other. You’re the one who’s still making the decisions. You have to interpret the numbers, analyze the trends, predict what you’ll be doing later in the day, and figure out how much insulin to take. What if a computer could do that for you?”
…a few years ago, a group of amateur coders, most of them type one themselves, were independently fiddling around with insulin pumps and CGM transmitters on their off hours, looking for ways to improve the devices. They eventually met, pooled their discoveries, and after a few more years of tinkering, created an iPhone program called Loop. It’s not available in the App Store or through any official channels—no doctors will prescribe it. Users need to find the instructions online and build the Loop app themselves. This bit of free code, Farnsworth tells me, paired with a hacked-together insulin pump and CGM, is an artificial pancreas.
“Is this legal?” I ask, imagining some dark alley where hooded hackers hand out instructions and tiny radios to desperate diabetics.
“Of course,” Farnsworth says, laughing. “It’s open-source software. It’s also a Facebook group. You can find everything you need online.”