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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 The system involves an outdated insulin pump that communicates with a small radio stick connected to a continuous glucose monitor, a computer motherboard and a battery pack.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."

4 of 104 comments (clear)

  1. Re:Yeah, sure by Anonymous Coward · · Score: 5, Insightful

    And when a bug causes it to use all its insulin at once and the child goes into a coma and dies, you'll finally understand why open source and the medical industry do not belong in the same sentence.

    I have been a type 1 diabetic for almost 20 years now, I use an insulin pump and before you get one they send you to school to know how to use it.

    The type of failure you are describing, though it could "POTENTIALLY" happen, is extremely unlikely as both the pump and the system controlling the pump have SERIOUS safeguards in place to ensure that can never happen.

    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 applaud the Open APS effort and it is something that needs to happen, and I am glad that luddite opinions like this, do not affect the progress of such efforts.

    Let me ask you this: How much time do you think you spent coming up with your "Genius" assessment.. now think.. How much time do you think that people such as myself who have been using systems like this for decades, have spent thinking about and surviving the very types of potential failures you have described as a matter of every day living?

    It is important that knee jerk snarky reactions like this do not get in the way of progress, because you literally have no idea what you are talking about, because you clearly do not live with diabetes or the problems associated with it.

    I developed an open APS type system for a college project as part of the beginning of my graduate degree in computer science and game theory. My professor had the same reaction and now I am using one of these systems and my doctor is more than amazed that my management of the disease is as nearly perfect as it is. The professor of course is not required to justify his criticism, because it was just a blow off , based on very little thought like yours, however I am glad that I sought to make a decision like this that has increased my health by orders of magnitude over what it was, along with other changes to my diet and exercise and most importantly, the life style change of automating the process of living an "observed and measured life". Most of what type 1 diabetics live with in terms of management of the disease are in a nutshell, overcoming problems everyone lives with and do not realize the impact of, other than of course, our having to deal with and compensate for not being able to produce insulin on our own.

    I suggest for your sake you rethink your position.
    Thanks for commenting!
    Have a nice night!

  2. Re:More than one million Americans by armanox · · Score: 4, Insightful

    Which is why I wish type II had a different name. There is no "cure" for type I - there is no magic combination of exercise and diet that can make it better. Diet control and exercise are required to manage type I, but the fact is the body is damaged and cannot regulate it's insulin levels (and as a result, cannot regulate blood glucose levels). People spreading misinformation like that is one of my biggest pet peeves (that, and all of the "oh, but you're not fat!" type of remarks that I get).

    --
    I'm starting to think GNU is the problem with "GNU/Linux" these days.
  3. Medical hacking by terminal.dk · · Score: 3, Insightful

    Medical hacking is the way forward. The established industry will fight it, but there are so many engineers and other tech people out there that will come up with solutions to their own problems, or that of their families.
    This is not the first time we hear about this. Many of the problems in the health industry is continously monitoring, and reacting upon values. This is just as much an IT discipline as a medical discipline. With low power computers (Arduino as an example), all types of sensors being available for cheap etc, we are almost where the computer industry was around 1975-80. engineers and hobbyists will hack together such devices. It is trivial to monitor blood glucose using a sensor on i2c. You could add 2 for redundancy. Then write code, and decide what to do with abnormal values.

    The problem for the established industry is, that things will get invented by users before the medical industry gets there = no patents.

  4. Re:More than one million Americans by ATMAvatar · · Score: 4, Insightful

    Do we have the will to use our technology to overcome biological messiness? Or would we rather condemn people who weren't born perfectly to a second class life while shaming them for being born wrong the whole way?

    It is far more profitable to force people to pay for expensive, recurring treatments throughout their lifetime than to cure them. To this point, I am not sure there is even any serious research being done for a cure - the problem is solved in the most ideal way for the industry that would be responsible for the research.

    --
    "They that can give up essential liberty to obtain a little temporary safety deserve neither liberty nor safety."