When little Andrew Calabrese’s pancreas gave out at age three, leaving him with a lifelong diagnosis of Type 1 diabetes, his parents Heidi and Jason wanted to do everything possible help him through the life altering disease. While Heidi set-up a support group to connect with other families battling the illness, Jason, a software engineer, devoted his time to building a device that could help regulate his son’s insulin levels.

He eventually succeeded in building an artificial pancreas system using OpenAPS (Open Artificial Pancreas System), a free online project that makes APS technology widely available to anyone who wants to save lives and reduce the burden of Type 1 diabetes. Developed by 27-year-old Type 1 diabetic Dana Lewis in December 2014, OpenAPS provides “a safety-focused reference design, a toolset, and an open source reference implementation that can be used by any individual – or any medical device manufacturer.”

Using these instructions, Jason spent two months learning how to hack an old insulin pump to automatically keep blood glucose (BG) levels in a safe range – both overnight and in between meals. He added a Continuous Glucose Monitor (CGM) that would provide BG data to the pump, and command it to adjust the temporary basal rates accordingly. After ensuring the device’s safety, and getting their doctor’s approval, Andrew finally began using OpenAPS to keep his insulin levels in check. In fact, the third-grader even carries it to school in his backpack. “OpenAPS is there when I can’t be,” Jason said. “It’s cut the time Andrew spends below 80 mg/dL in half.”

Photo: Jason Calabrese

The Calabreses aren’t the only tech-savvy family that have taken to OpenAPS to device their own APS for their kids or for themselves. Over 50 people have made use of the project so far. In fact, the APS technology has been studied and researched for decades, and the FDA has made developing such devices a priority. Several medical technology firms are currently working on them, but commercial development and regulatory approval have delayed the process. Meanwhile, those who are technologically knowledgeable enough to build their own, are going ahead and doing just that.

The Wall Street Journal reports that over one million Americans live with Type 1 diabetes, an autoimmune condition that stops the pancreas from producing insulin. With so many people suffering from the condition, and no cure or relief in sight, it is only natural that so many of them are opting to build DIY artificial pancreas systems. And the FDA does not have the legal means to stop them, as it can only regulate companies and not individuals.

Photo: Jason Calabrese

There is some skepticism among experts about the safety of using such DIY, home-built artificial pancreas. “It is clearly for people who have some expertise in computer programming,” said Bruce Buckingham, pediatric endocrinologist at Stanford University. But he also added: “What it shows is that people are anxious to get something going.” The best solution would be to get a commercially produced device on the market, which companies like Medtronic and Johnson & Johnson are currently working on. When they’ll actually be available, however, is anyone’s guess.

Although Jason Calabrese admits that this DIY solution is still vulnerable to pump or tubing failures, and that the insulin dosing for meals still needs to be done manually, he feels it’s better than doing nothing. “Diabetes is dangerous anyway. Insulin is dangerous. I think what we are doing is actually improving that and lowering the risk,” the 41-year-old father said.

Photo: Jason Calabrese

Sources: The Wall Street Journal, Insulin Nation