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Open Source Artificial Pancreas Helps Engineer's Son Survive With Type 1 Diabetes
HughPickens.com writes: More than one million Americans live with Type 1 diabetes, an autoimmune condition in which the pancreas stops producing insulin, a hormone needed to turn sugar into energy. Now Kate Linebaugh writes at the WSJ that Jason Calabrese, a software engineer, followed instructions that had been shared online to hack an old insulin pump so it could automatically dose the hormone in response to his son's blood-sugar levels. The Calabreses aren't alone. More than 50 people have soldered, tinkered and written software to make such devices for themselves or their children. Initially, Calabrese worried about the safety of the do-it-yourself project. He built it over two months, and spent weeks testing. At first, he only tried it out on his son on weekends and at night. Once it performed well enough, he said it felt irresponsible not to use it on his 9-year-old son. "Diabetes is dangerous anyway. Insulin is dangerous. I think what we are doing is actually improving that and lowering the risk," says Calabrese. The home-built project that the Calabreses followed is known as OpenAPS. The only restriction of the project is users have to put the system together on their own. As long as the people tinkering with their insulin pumps aren't selling or distributing them, the FDA doesn't have a legal means to stop it. The system involves an outdated insulin pump that communicates with a small radio stick connected to a continuous glucose monitor, a computer motherboard and a battery pack. It is an outgrowth of another open-source project where caregivers developed software to remotely monitor blood-sugar levels. The size of the homemade system varies, and the one that Calabrese carries has come down from the size of a small shoebox to that of a headphone case. He wears his insulin pump and glucose monitor on his belt. "It is clearly for people who have some expertise in computer programming," says Bruce Buckingham. "What it shows is that people are anxious to get something going."
Open source is important to the process of innovation otherwise type 1 diabetics would still be using needles and fingerstick meters alone to manage a disease that by using those tools is in a word unmanageable.
I, too, am a type 1 diabetic. I've used an insulin pump in the past, and I use needles and "fingerstick" meter, now. I don't want to put down the insulin pump, as it really is a very potent means for managing the disease. It just didn't work for me; I'm a fat, sweaty Norwegian living in California's San Joaquin Valley, and that catheter just doesn't have any chance of staying put.
That said, using Humalog and Lantus, I've got my A1C down to 6.5. Needles and a conventional glucometer are sufficient to the task, so long as you put forth the effort to keep track of what you're eating, and how much you need to take for it; which you should really be doing with an insulin pump, anyway.
Having a smart phone app dedicated to crunching the numbers and keeping record for you rather helps, too.
Learning about brewing beer, by brewing beer.
The argument against most medical advances revolves around improbable failures. Meanwhile, people die, go blind and lose their legs because they are using inferior, outdated treatments.
The device being discussed in this article is clearly preferable to purely manual methods that may need to be applied when the patient's mental faculties are impaired by a severe glucose imbalance (or even when the patient has entered a coma). Might faults in the hardware or programming result in accidents? Yes, but the risk/benefit analysis clearly favors its use.
I would add that there is a crying need for much more research into the impact of the microbiome on autoimmune diseases, such as diabetes. There is tantalizing evidence that type 1 diabetes may be curable for some individuals simply by modifying the gut bacteria.