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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 The system involves an outdated insulin pump that communicates with a small radio stick connected to a continuous glucose monitor, a computer motherboard and a battery pack.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."
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.
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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.
That's illegal. Now he should turn himself in. The law says "hacking" is criminal so now he is guilty and a criminal. It's the law!
This is a common troll post on articles about type 1 diabetes... it happens nearly every article here and some other sites, and can sometimes result in more than half of the comments being in response to it and increasingly stupid troll replies.
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.
It does in the cases where autistic children have mentally challenged parents.
Sleep your way to a whiter smile...date a dentist!
I'm sure the FDA is wracking it's brains looking for a way it can jump in and snatch defeat from the jaws of victory.
I wish they didn't call it an artificial pancreas as insulin is only one of hormones secreted by that organ. It also has to be re-filled with insulin while the pancreas does not. It is an automatic insulin pump not an artificial pancreas. It is a great device and does not need the hype.
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.
Certain brands of continuous glocose sensor, insulin pump, an insulin pump with glucagon instead of insul, and iPhone app already provide this commercially.
* http://www.imedicalapps.com/20...
It's very interesting that open source software is available and I applaud the father for his involvement with his son's medical issues. I'd urge him to be very careful indeed: many programmers of my acquaintance fail to properly sanitize their inputs, and not to properly handle edge cases. And remote controlled insulin pumps do present profound security risks, so I'd urge caution for any Type 1 diabetics with genuinely malicious and cunning enemies.
> Omeprazole is cheap.. very cheap and over the counter. I think this kind of shoots down the whole.. "Oh billion dollar industry barons want to keep diabetes a disease and sit on any cure" arguments..
I don't see how it shoots anything down. The researchers who get this working for humans are good candidates for a Nobel Prize and would improve millions of lives around the world, so certainly various labs will pursue such research vigorously. The industry for Type 1 diabetes supplies includes insulin pumps, infusion sets, and continuous sensors (for people whose insurance will cover those quite expensive treatments). It also includes insulin, which is about $150/10 ml bottle which is apparently less than a one month supply for many diabetics. And it includes glucose test strips, which are roughly $1/each and may cost $150/month for a closely managed diabetic. That is a a very large captive audience for long-term medical treatment. I would expect the main manufacturers of diabetes supplies to delay FDA approval of a new treatment as long as possible before a large amount of their annual income evaporates.
Bwahahaha! I even got up early today, and you beat me to it!
It's just all... I mean, my god. You're probably trolling, and I was going to troll if you hadn't gotten here first, shame on me. Yet this is what the average American is thinking. DIABEEEETUS is what they hear. Stop stuffing your face! Obviously, clearly.
Mod me off topic for this, but this is just like, I mean really it's no different, from the fact that trans men and other biological gender messiness simply doesn't exist to Lyin' Ted and his supporters. Nope, transgender => man in dress. Nope, diabetes => poor eating and exercise habits. Clearly! Obviously!
Well, my rice cooker just went off so it's time for some black beans and rice for breakfast. Absolutely yummy. I did want to say that this project sounds incredible. I mean, my experience is obviously fairly focused on one condition, and I've had success taking a kind of hacker's approach to it instead of waiting for the medical community to come around about the realities that face those who live with my condition/birth defect/whatever you want to call it. I'm glad to see hackers dragging another area of medicine by the feet.
We have the technology. 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?
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."
I share your general cynicism about big pharma. We know how to transplant the pancreas. Indeed, there is research into curing type I diabetes. Now, I'm not sure if that's the ideal yet, which in my mind would be an artificial replacement for the pancreas.
(The second link is good for a hearty round of "fuck beta" if nothing else!)
The recent development in big pharma vs. the patients I've been struggling to understand is the hatred towards opiod-based pain killers. I would have thought that the more people big pharma could get hooked on things like SSRIs and opiates the better. At the same time, NORML shares news that there's been a recent study that shows cannabis flower reduces dependence on opiates for controlling pain. (Would give link but I'm never sure if I should go to norml.org at work--it should still be on the front page or else page 1 or 2 of their blog.)
Part of me wants to wonder if big pharma is waving a white flag here or what kind of game the medical-pharma-insurance complex is trying to play. Surely, the last thing all the big interests (including alcohol and tobacco) would want is a plant that can be grown at home that makes several classes of drugs from anti-depressants to pain killers to even anti-epileptics redundant in many cases.
This is a life saving technology. Yes, it needs to be fail-safe, but it's important. Airbags are the same. They are life saving technologies. And they need to work perfectly. If an air-bag fires off by mistake, while you are driving, it can kill you. And yet BILLIONS of them work in the field ever day. Fail-safe is possible.
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.
Junk food doesn't cause your body to reject organs and destroy them. There are 250+ types of auto-immune diseases and non will be caused by 'junk food'. Exposure to heavy metals is a possible risk factor.
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We know how to transplant the pancreas.
And the article you quoted has this to say:
"All transplantation patients need lifelong immunosuppression"
Thanks but no thanks. I'll keep my Type 1 and all it's complications instead of the immonosuppression therapy.
If you post as Anonymous Coward, don't expect a reply.
Except that shaming and "just lose weight dammit!" have a 95% long term failure rate as a medical treatment method.
(-1: Post disagrees with my already-settled worldview) is not a valid mod option.
The modern lifestyle problems are more sedentary lifestyle than too much food.
Every time I had a physical labor job I dropped weight like a rock.
Again, it is lack of regular physical motion all day cuttong calorie burning than eating too much, for the vast majority of people.
(-1: Post disagrees with my already-settled worldview) is not a valid mod option.
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.
Why the distinction when Type 2 diabetes is also not caused by sugar and carbs?
Being overweight does have a very slight correlation with having Type 2 diabetes, but the reason why you are overweight does not matter. You could either eat too much candy, not be active enough, have a thyroid problem, or just be "big boned".
But just eating a lot of candy and pasta is not a contributing factor to getting Type 2 diabetes as long as you don't let it make you fat. And even if you are fat you have a very similar risk of Type 2 diabetes as everyone else. For instance about 80% of people with Type 2 diabetes are overweight, as opposed to 74% of the general population. Not a huge difference in demographics.
-- All that is necessary for the triumph of evil is that good men do nothing. -- Edmund Burke
Good to see people do an end run around the hellthcare industrial complex to save theirs and their loved one lives lives. Too bad they HAVE to do this.
Good to see people do an end run around the hellthcare industrial complex to save theirs and their loved one lives lives. Too bad t hey HAVE to do this.
Or look at it this way. You have 350,000 people using an older method. Say self-monitoring and injection.
How many of them die due to failure to correctly self-monitor and medicate? Maybe it's 700. Hooray, you've just cut the fatality rate in half.
I remember one of my daughter's friends was diagnosed with childhood diabetes recently. She had to spend six months performing the testing and self-medicating regimine before they fit her with any kind of pump, so she'd know how to do it, what to watch out for, and so on.
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It's because of too much sugar and carbs. Get rid of the junk food!
You are only partly right.
No, he is 100% wrong. Sugar and carbs do not contribute to Type 1 or Type 2 diabetes. Being overweight does have a slight impact on getting Type 2 diabetes, but the foods or genetics that made you overweight are irrelevant. If you exercise enough to eat all the pasta and candy you want and stay fit, you have no increased risk of Type 2 diabetes.
-- All that is necessary for the triumph of evil is that good men do nothing. -- Edmund Burke
Shaming type 2 diabetics surely makes sense. It is almost certainly their own fault they are that way.
Type 2 diabetes has very little to do with personal choices either. Being overweight does slightly increase your chances of getting Type 2 diabetes, but it is far from the only risk factor. My dad has had Type 2 diabetes since he was 40 and is a very active slim person (farmer by profession).
Shaming anyone because of Type 2 diabetes makes no sense.
-- All that is necessary for the triumph of evil is that good men do nothing. -- Edmund Burke
This doesn't quite add up. Omeprazole is already on the market. So if it can actually help. people will be able to go out and buy it. Even if the greedy corporate overlords (to adopt your description) were to prevent it from getting approved for this purpose, the drug would still be available on the market and doctors are allowed to prescribe off-label uses. That being said, I tried to Google Omeprazole as a potential solution for Type I diabetes and found nothing. So I don't think that the issue is industry overlords but rather that Omeprazole is unlikely to heal the pancreas.
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
Yeah, except that the level of care given in correctional facilities is terrible.
A friend of mine died shortly after being released from prison (they released him because of his medical condition btw) because they wouldn't care for his leukemia properly.
My eyes reflect the stars and a smile lights up my face.
Maybe in your country but not the USA.
The FDA has lawyers, which means they have the legal means. In addition, having or not having the law on their side means nothing to washington bureaucrats since there are no consequences to abusing the law.
Wouldn't it make sense for you potential to live well and long to move to a region of the world where a catheter would stay in place better?
I don't mean this in a chiding way. You might have the opportunity to live a happier, healthier life in a climate like, say, Norway, with an insulin pump.
Current studies do not show the food you eat to be a contributing factor, although there are some studies showing sugary drinks have an impact even after adjusting for BMI. Even though the American Diabetes Association is clear that increased sugar consumption is in food is not a risk factor for type 2 diabetes, it does single out sugary drinks as a risk factor.
Diabetes Myths
Sugary drinks as a general rule are the worst thing you can put in your body. Not only does a can of cola have more sugar than a bag of skittles, there does appear to be something different about how the body processes nutrients in drinks as opposed to food. Although the research into why hasn't been very conclusive (at least that I can find).
-- All that is necessary for the triumph of evil is that good men do nothing. -- Edmund Burke
There's an exemption to DCMA for medical device research, see http://cyberlawclinic.berkman....
My son was just diagnosed T1D this past September. He's currently 6 years old.
What I REALLY WANT is a BG meter that can connect to Wifi and push the data to me every time his BG is checked.
I am aware of CGMs that can do this, but my son isn't in a situation to require a CGM, and the cost is just crazy on them. We keep his BG under control simply through tracking everything and appropriate injections.
I'd like for him to do his own checks before lunch at school when he's a little older, so I don't have to be there. I don't want to rely on the school to work with him every day, because they are already busy and have enough to deal with. I would like to be notified so I know if he's running high or low, or if he simply forgets to check.
I should note I am aware of some devices that connect over Bluetooth, and you can then relay the data through a smart phone... but I'd like to avoid the second device. I want a device that can connect directly to Wifi.
There seems to be a large difference between a medication already being available, and a medication approved for a separate use. The existence of the drug for pme use is not _proof_ that the drug's use for another condition is not being hindered by lobbying, by fraud, or by the simple encouragement of the need for more careful studies before its approval for a disease as dangerous and sometimes as complex as Type 1 diabetes.
> Why the distinction when Type 2 diabetes is also not caused by sugar and carbs?
No more than hay fever is caused by pollen. Being sedentary with poor exercise and poor diet turn a vulnerability to Type 2 diabetes from a possibly unnoticed sensitivity into a dangerous disorder that can kill. More active lifestyles, with notably less food and less glucose spike inducing carbohydrates can prevent it from ever being noticed, and remain the safest treatment for Type 2 diabetes.
That's true, but doctors can start using it right away. Once it is approved for one use, doctors can prescribe it for "off label" uses at least in the US. For cheap drugs that are available as generics like omeprazole, nobody is going to try to get them approved for additional uses. Getting approval is time-consuming and expensive and there is no profit in doing so. Instead, studies will be done to figure out if its effective or not. Some doctors will be convinced, some will not. But as a patient you start buying it OTC and using it today. But again there seems to be no evidence that omeprazole helps with Type I diabetes and some evidence that it is harmful. I'm not a doctor and this is not medical advice. If you have diabetes you should see a medical professional.
I was diagnosed in 1993, so I came in some time after human-based insulin hit the market. Never saw humalog until I got an insulin pump, but I find that it offers somewhat tighter control over my blood sugar. Surviving diabetes is about getting insulin in your system, but controlling it is really about getting the right amount of insulin in your system all the time.
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I find that very interesting. If it works as well as you imply, I may be keen to go back to using a pump.
Learning about brewing beer, by brewing beer.