Slashdot Mirror
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 The system involves an outdated insulin pump that communicates with a small radio stick connected to a continuous glucose monitor, a computer motherboard and a battery pack.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."
That can be one of the causes of type 2 diabetes , however genetics plays a far bigger role.
Type1 is NOT because of sugar and carbs.
http://www.mayoclinic.org/diseases-conditions/type-1-diabetes/basics/causes/con-20019573
You may as well be saying vaccines cause autism.
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!
It's because of too much sugar and carbs. Get rid of the junk food!
You are only partly right. As a type 1 diabetic using an insulin pump, I have minimized my carbs in my diet and have found that increasing muscle mass and increasing energy by reducing my dependance on carbohydrates for energy has improved my life, however.. It has not magically given me the ability to produce insulin on my own. Therein lies the need for a system like this for type 1 diabetics.
I agree with your position, because I have dealt with and adjusted my lifestyle in terms of what you are saying but for type 1 diabetics that is only a part of the challenge to surviving with this condition.
Managing blood sugar with an insulin pump is a full time job and having a level of automation that you can observe and manage and live a somewhat normal life is a godsend. I would not expect you to understand, but you have full opportunity to read up on it by reading the fine article.
have a nice day!
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.
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.
I know Dana Lewis, so I can probably tell you (the AC, not the reply) more about this system than the article does. There are safeguards around "use all its insulin at once" in the pump controller itself, that the OpenAPS system *cannot* override. The OpenAPS system effectively automates the "pushing the button" actions on the pump that are normally done manually by the patient who is reading his/her glucose meter and doing some fairly complicated math in his/her head to figure out the proper dose. It's an API client, nothing more.
The pump itself has safeguards against overdosing, either via manual control or APS control. And if there's a failure of the OpenAPS system, it simply reverts to manual control, which patients have been doing for years.
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.
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.
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).
Actually even in Type II diabetes and MODY there's acually no cure: you have to manage it with diet and lifestyle and if you're lucky the medication you've to take are pills and not insuline shots. But the body is indeed damaged. In type II diabetes normally you've a reduced insulin production so you're going to have blood glucose swings if you don't take medications and start to eat badly.
I know some people with type II diabetes that are quite skinny and have an athletic body, due dieting and exercises, so I suppose that comment is made also with type II guys.
DMCA 2 may stop that but if it has jail/prison time then the uses win as when they are in lockup the state is on hook for there medical costs.
In type 2, you have INCREASED insulin production, but also greatly increased insulin resistance, leading to a relative insulin deficiency despite the absolute increase. - a physician
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."
Well, improbable failures x widespread deployment = many instances of failure.
Also, high testing cost / widespread deployment = reasonable per unit safety cost.
So clearly for commercial medical devices, it makes sense to judge the risk of a treatment against the prevalence of the disease. About 350,000 people use them; probably more might if they were improved but let's go with that. As an individual you might accept a 0.1% chance of a fatal accident as acceptable given the benefits of an improved device; but if you're a manufacturer that translates to 350 deaths. That's a lot of people for a medical device to kill.
So clearly it's worthwhile to invest quite a bit of money to reduce that death rate by an order of magnitude or two. If you could drop that rate to 0.001% for, say, a hundred million dollars, amortized over 350,000 users that $286/device. You'd have saved 347 lives at an approximate cost of $290k/life, which seems pretty reasonable to me.
Personal tinkering is a different story. You might find the 0.1% chance of killing your child to be acceptable, and you almost certainly don't have 100 million bucks to spend on it. So maybe it's an acceptable bet for an individual, but that level of risk would be unacceptable for a product that is deployed on this scale. If you were talking about a device that only had a thousand users in the world, that level of risk would be acceptable.
Post may contain irony: discontinue use if experiencing mood swings, nausea or elevated blood pressure.
I really wish people would get informed before making brash statements. We're all guilty of it....check out the TED Talk this doctor gave regarding his experience with Type 2/insulin resistance. He challenges the notion that everyone who has Type 2 is fat.
https://www.ted.com/talks/pete...
I'm a Type 1, and although I don't adhere to the rules as strictly as I should, I at least know what disease I have. The ones I really hate are the Type 2's who say that "I used to be Type 1, but after losing weight I moved to Type 2". No, you didn't. Just because you don't have to take insulin any longer doesn't mean you're now magically Type 2, because you were never Type 1. If people who have the disease can't get it right, how can we expect the general population to do it? Combine that with the nonsense being peddled by folks like Dr. Oz, and you end up with people believing bullshit like this:
http://draxe.com/how-to-revers...
If you post as Anonymous Coward, don't expect a reply.
Clearly there is a market, why hasn't American Style medicare identified and kickstarted this already?
Oh, it's because the profit isn't BIG enough. It's too open source.
Chew on that for a while next time you vote in the old USA.
---Up Up Down Down Left Right Left Right B A START