Since 2014, open source hackers have been perfecting the OpenAPS, an "open artificial pancreas" made by modifying the firmware of discontinued Medtronic insulin pumps, which were discontinued due to the very security flaw that makes them user modifiable (that flaw also leaves them vulnerable to malicious modifications).
Once modified, these devices automate the process of monitoring the user's blood sugar, calculating an insulin dose, and administering it, a task that has to be performed with great precision, often while the user is experiencing blood sugar troughs or spikes that can impair cognition. Over- and underdosing with insulin has negative effects in both the short and long term.
Open artificial pancreas hackers have formed a tight-knit, cooperative community that shares knowledge and techniques, as well as continuously improving the code.
By contrast, commercial artificial pancreases are fully locked down and force users to buy proprietary insulin at severe markups (insulin is already one of the most marked up medical products in common usage, with prices rising over 1000% in the past ten years).
Medtronic strenuously objects to the OpenAPS project and has not released any more user-modifiable pumps.
Last year, EFF released its Catalog of Missing Devices, including this trio of artificial pancreases that illustrate three very different possible futures for artificial organs and proprietary and exploitative software.
In the meantime, people with diabetes (and parents of kids with diabetes) are left to relentlessly scour the internet for used, obsolete Medtronics pumps that can be integrated into user-controlled, open, auditable artificial pancreases. Some new pump models are showing promise, but these are generally not available in the USA, leading to a strange market for pumps imported from overseas.
The looping community is so tight-knit that the person who wrote the code is sometimes the person answering questions. Hilary Koch, whose son loops, remembers spending two hours on the phone with one of the creators of OpenAPS. She tries to do her part too. “How you give back is, if you see somebody ask a question you know you can answer, you answer it,” she says. Boss also scours eBay for Edisons, which have been discontinued, and has given a few to people who want to loop, in return for a small donation to Nightscout, another open-source project used with OpenAPS to remotely access glucose data.
When the creators of OpenAPS, Dana Lewis and Scott Leibrand, shared their code back in 2015, they did so for free. They weren’t in it for money, and that ethos is still very much alive in the looping community today. And so, despite all the people clamoring for loopable Medtronic pumps, attempts to sell one to the highest bidder are met with swift backlash in the online community. The going price is usually about $500. “You’ll see posts for $1,000 to $3,000—and community members are like, ‘Haha, no,’” says Lewis. (The sticker price of new Medtronic pumps runs over $7,000.)
Since OpenAPS first became available, looping options have slowly expanded. Another group developed Loop for iPhone, which is more user-friendly in some ways but still requires an extra piece of hardware called a RileyLink.
People Are Clamoring to Buy Old Insulin Pumps [Sarah Zhang/The Atlantic]
(Image: Rebecca Vitale)