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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 The system involves an outdated insulin pump that communicates with a small radio stick connected to a continuous glucose monitor, a computer motherboard and a battery pack.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.
When information is shared instead of hoarded by those shackled by intellectual property laws, non disclosure agreements, etc. then we may find cures. This might be because the cure is not in the best interest of some folks in this business. It won't surprise me one bit if major breakthroughs that have eluded big pharma for years are just around the corner - and might cost them their big earnings on chronic, incurable, lifelong illness.
Education and vigilant self-management. I can see where something like this might help someone who can't manage their own diabetes, but ultimately he would probably be better off to teach his son about how to manage his own diabetes with good diet, self testing and injecting when required.
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!
It doesn't?
You're also overlooking the real danger: user error. A pump, at least, is very unlikely to use the wrong insulin since they use only one, and that's sufficient for both short- and long-term glucose control.
Out of the approximately 50,000 times I've manually dosed myself with insulin, I've inadvertently used short-acting instead of the intended long-acting exactly twice. How do I know? From almost ending up in a coma. My son, who has been continuously connected to a pump for the last 6 years, has never even come close to being in real danger.
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.
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.
You're kidding right? .. otherwise you don't really understand what open source is all about.
Its good that they have done this, but its not for me. Personally I think we need to wait for the technology to get smaller, or the 'cell-in-a-box' type technology to come to fruition. The inconvenience of carrying around that much gear compared to a just an insulin pen and glucose tester which fits in my pocket just makes it not worth it. There is also something about using crusty old equipment with notes such as "use firmware version below X for compatibility" and especially something about javascript code feeding anything straight in to my bloodtream that just unnerves me. https://github.com/openaps/oref0/tree/master/bin
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.
It is a situation where you have to find what works for you. I have a friend that was born with type 1 and like you doesn't use an insulin pump but manages with fingersticks and various long acting insulins. That didn't work for me.. in 2006 I ended up in a coma because I got dangerously high during an episode of stomach flu and ended up in the hospital with DKA.
There are a lot of ways that you can find a method of attachment for the cannulas and CGM that can work. I am fortunate that I live in a colder environment than you do, that makes the sticky bits easier to keep in place. I use Novolog, but in our discussion here I would take Humalog and novolog as equivalents of fast acting insulins. I only take novolog and use a pump and an artificial APS system to record and control my basal rate so that I stay between 80 and 100 at all times.. I do occasionally find myself spiking up to 140.. but that is it.. Before the pump I averaged in the 400 range and varied wildly between crippling lows in the 20s and the 400s.. which I decided enough was enough and went on the pump. Another thing that helped me out was adopting a ketogenic diet which helped minimize some of the chaos and helped me lose about 70 pounds of body fat in about a year. Not only did that help my cholesterol numbers and overall insulin sensitivity, but made the variations on the blood sugar numbers the pump had to deal with, much more stable and flat and less variable.
I see that you point out that a conventional glucometer was up to the task, but in my experience they don't articulate when you are rising or falling but just that you are instantaneously high or low at a given point. This was not sufficient for me to stay stable and in range which was my goal. I agree that in a pinch I can get by with just fingersticks.. but that is a lot more effort for not as good of a result in my case. I also built as part of my system a nutrition management database that keeps track of each food item I eat, it's macronutrient content in terms of protein, carbs and fats and use that to let the automation get a handle on what insulin sensitivity and needs will be like over time and adjust in the presence of changing circumstances. Exercise, sleep, stress, inaccuracies in weighing the exact portions of food I eat and yes... the temperature of the environment are all confounding variables that the system I built deals with to keep my insulin flow from my pump going such that my blood sugar responses are as close to a normal person's as possible.. I generally have little spikes like I mentioned after eating where i go up above 100 for about 2 hours and then slowly come back down into the 90s most times.. I feel so much better doing that then I did being all over the place that I would never give up what I am doing now up for anything other than a complete cure to type 1 all together. What I am doing for me is the next best thing to being cured hands down. I wish you the best of luck with what you
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.
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.
I am the reply, and I don't know Dana Lewis but have been following her work since she started, and yes you are right and yes that was the point I was making that the pump has, by default a Max bolus, which cannot be exceeded without changing the setting on the pump and there is no way for the APS or for that matter an external "hacker" to change that.
Thanks for commenting :)
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.
There are enough trolls on forums. Imagine if one of them contributes malicious code just for fun. It's all about safeguards and open source almost has none..
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).
I agree, that I wish type 2 had a different name. But that being said, I don't sweat the idiots that have heard a 2 minute soundbite and think they know everything about diet and exercise, and therefore feel qualified to either fat shame people who have type 2 diabetes as being lazy and spinning in their chairs and eating blueberry pies until they pass out.. or that type 1 diabetics are that way because they ate too much sugar whilst spinning in their chairs until they pass out.
There are dumb people who like to criticize others whilst they think they know everything. There is a name for that, it is called the Dunning Kruger effect.. google it.
Yes spreading misinformation is a big pet peeve of mine, also the attitude that because someone is healthy, it is somehow because they know better than me how I should live my life.. and that because I have type 1 diabetes it is because I don't know how to live my life.. and they are smarter and I am dumber than they are.
I don't take their crap, because they are idiots.. I wouldn't be alive If I were as stupid as those people.. but in a way I envy them.. they have it easy, they can survive sitting in a spinning chair eating blueberry pies and not go into a diabetic coma.
In addition to managing my type 1 diabetes with a pump, CGM and an APS system of my own design, I adhere to a ketogenic diet. It has allowed me to control my blood sugars an order of magnitude easier than it would have been to do by eating the standard 60% carb, 20% fat 20% protein diet that the us medical establishment tries to push on you based on the bad 1950s research of Ancel Keys. Everywhere you look it rears it's ugly head and leaves in it's wake, populations of people who suffer from rising obesity, heart disease and type 2 diabetes. This has a name and it is Metabolic Syndrome or Syndrome X.. which is a big killer in the US, almost as big , if not bigger than Cancer.. which I call the big C.
No
It's hacking. That's verboten. So it's criminal. People who do it are criminals. You wouldn't want criminals to play doctor on your body, now would you? Or on your children? Well?
Yes, you can thank the "computer security" industry poser s'kiddies for this. The losers have won, so we all lose. Share and enjoy!
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.
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.
That is very interesting about gut bacteria, I do know this that there are clinical trials for curing type 1 diabetes with high dose omeprazole which is an over the counter indigestion medication. Apparently Prilosec can, over time cause beta cell regeneration. That is all well and good, and is half the way to a cure, now all we have to do is figure out how to make the immune system stop killing the regrown beta cells. I have taken Prilosec and for about a week or two after taking it noted that my blood sugars ran lower on the same diet and insulin and exercise regimen. Might be something to it. Anecdotal evidence, sure but we will know in August of 2017 if the clinical trials on this had a positive effect or not. 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.. because.. 20 dollars will get you a week supply of something that could potentially cure type 1 diabetes. Kinda crazy the times we live in eh?
I've no problem with open sourcing it, this kind of thing has been an Iphone app for years with certain brands of insulin pump and continuous glucose sensor. There are certain classes of error that have ocurred, even with human handling of my own pump.
* Missetting a standard basal rate, which can easily be 4 times the standard dosage, or 0.
* Suspending the pump and forgetting about it.
* Ignoring a recent bolus and applying an extra manual bolus, so you get up to the maximum bolus of insulin. This is typically on the order of 10 units: not enough to be immediately lethal, but enough to bring a very high blood sugar down to normal or even lower, and enough to cause convulsions if your blood sugar is not already quite high.
* Missetting a temporary basal to 0% or 200%.
* Misentered blood sugars leading to wildly large boluses or suspension of the pump.
* Misentered amounts of food (typically recorded as grams of carbohydrate).
Also note that the amounts of food is error prone: it's awfully tough to measure the carbs of takeout food.
Insulin pumps are much better than injections because they allow a far more flexible and dynamic response to tests, to exercise, and to food. But insulin pumps are basically like portable iron lungs for polio victims. *None* of the continuous sensors is very accurate over time, they *all* require frequent recalibration with a standard glucometer, and the pump site iinfusion kits and continuous sensors are quite expensive over time. Figure that they basically double or triple the price of daily insulin treatment, then add in roughly $3000 for the pump itself, and it's a very expensive set of tools. There has never been a good continuous sensor for blood glucose. They all involve an injected needle drawing body fluids osmotically for chemical testing, hurt, they're all prone to confusion and drift, because *they're not consistently accurate*. They all drift over the few days they're worn.
By the way, there have been multiple attempts to make spectroscopic sensors. None of them worked well, and the vendors of all of them were convicted of stock fraud for basically lying about their accuracy. (Look up the Dreambeam, the Futrex, and the Diasensor if you don't believe me!) And it' not a matter of money and development time: the spectroscopic spread of other components in blood and tissue, overlapping with the spectral response of glucose, made reliable measurements impossible.
For real treatment for Type 1 diabetes, you need to look at Dr. Faustmann's work at Mass. General Hospital. Her lab found that you can treat the auto-immune problem directly, and it cured Type 1 diabetes in lab animals. They formed new insulin producing cells from adult stem cells, which the immune system no longer attacked and cured the diabetes. They're gathering funding for their second round of human testing, (See http://www.faustmanlab.org/) And the treatment? It's BCG, the tuberculosis vaccine in use worldwide. It's applied in small doses every day for 30 days, with very tight blood sugar control. That's why it never showed up as a miracle cure for Type 1 diabetics visiting 3rd world countries. It's also why no one could replicate Dr. Faustmann's work for years, because the lab animals at MGH got much tighter blood sugar control than most test animals. (Blood sugar tests are *expensive, about $1/test with the cheapest test strips!)
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.
And this is, in the end, what it all comes down to:
Anything is better than old and busted.
This is sadly half the damn medical industry because medical devices cost 17 arms and 22 legs, so nobody gets anything new and you are stuck being treated with things that are patently worse for you than something made more recently with less testing.
Cancer treatment is a good one for this. It took ages for more advanced radiotherapy to become more commonplace, those 3D ones that fire multiple rays from various angles to minimize damage between the tumor and the outside of your body surface.
When you are seriously ill and require constant supervision either by an external party or yourself, you will do ANYTHING to make that supervision minor.
Anything is better than having to deal with constantly micro-managing your body. (I know this awful feeling as well)
Automation isn't hard to test if you, y'know, actually test it.
The majority of the hardware and software industry do NOT test their shit to any reasonable extent, which is why there are so many bugs and failures in them.
Ironically enough, you can automate a considerable number of tests... (including hardware)
> 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?
I'll try to keep this short.
You can be a diabetic type 1, have an A1C around 4.6, have physiological level of insulin in your blood, have a normal weight and thus have a life expectancy equal if not better than any non diabetic.
The key I give you is Richard K. Bernstein, a diabetic type 1 since childhood. He is an engineer turned medical doctor to be able to published is systematic end-to-end management of diabetes. He is the first ever diabetic to have monitored his own blood sugar. He reversed all his complications of diabetes. At 81 now, he is still kicking.
I warn you that it takes some time to grasp everything he has to say about diabetes.
https://www.youtube.com/channel/UCuJ11OJynsvHMsN48LG18Ag
If you ever adopt his solution to diabetes, please post here your improvements from time to time. I would like to see you get to his venerable age unscathed by diabetes.
An anonymous coward who cares for you.
Under the Anti-Tampering Act of 2009, it is illegal to tamper with a medical or consumer device in any way, shape, form, or fashion, if that tampering has the potential to cause bodily harm or death.
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.
Open Source is FULLY compatible with medical industry. (except for the industry's business model)
Tinkering often has a key difference with the medical industry in the fact that the industry does rigorous risk assessment and reduction. The process of risk assessment (like described ISO12100:2010) is not embedded in much machine design in the US (contrary to Europe, where many directives and standards require a risk assessment and reduction process). Medical gear (and probably others like offshore) is an exception, as that does require you to do assessments in the US as well, but your average tinkering American engineer is not accustomed to it a lot. This means that many tinkerers may miss a lot of hazards, and the design may be less safe because of it.
Tinkerers that can bring to the table a high enough level of competence (comparable to that of the medical industry and their auditors) on 'what could possibly go wrong' can achieve a higher level of safety than the industry could.
Just like in software, many open source hardware designs are made by the same professional engineers as in industry, only in their spare time.
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
Your rant is all over the place. Learn to rant.
Shaming type 1 diabetics doesn't make much sense.
Shaming type 2 diabetics surely makes sense. It is almost certainly their own fault they are that way.
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.
Despite what you might think about the companies developing treatments for various ailments, I have it on pretty good authority that they would rather see people cured than derive a continuous income stream for the rest of their lives.
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.
"Artificial pancreas" implies that it makes its own insulin, not just a repurposed insulin pump and controller with some additional software.
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.
Despite what you might think about the companies developing treatments for various ailments, I have it on pretty good authority that they would rather see people cured than derive a continuous income stream for the rest of their lives.
The researchers and engineers, sure. The owners, upper management, lawyers, marketers, etc... I doubt that.
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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What I'm curious about, is the algorithm used to decide when to ask the machine for more insulin - I'm wondering if/how the software
is looking at the rate of change in the glucose level and how long it waits to see if a given value is continuing to change to warrant
additional insulin, and how that might compare to the "manual" methods used in the past (or, nowadays, in conjunction with a
smartphone app, etc.). Thankfully, I'm not diabetic, although my late mother-in-law was Type II and had to suffer through the
finger-stick/test strip regimen throughout her late 80s, and it's easy to see that this would be a boon for Type I patients.
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.
Type II does have a different name. Adult onset diabeetus. AKA You are fat and horrible at self control.
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.
And I wouldn't test my own DIY insulin pump without a cadre of test engineers and thousands of hours of trial runs. It's just too easy to screw up with a fractured cam sourced from a dodgy supplier or a badly placed divide by zero. Human lives are worth the expertise of, well, experts.
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
The people / community behind NPR are going to HATE this! It's going to cause massive conniptions to their control freak personalities.
I LOVE it. Good job engineer!
There is nothing wrong or dangerous about an "open source insulin pump". The danger lies in a carelessly built, carelessly programmed unit. An open-source unit can easily be as well built, programmed and tested as a unit from a manufacturer.
You can build all sorts of fail-safes into an open-source unit. Read up on the topic, you can learn the same tricks the engineers in a pharma coorporation can. Such as validating input from the glucose monitor, in case something goes wrong there. And no matter what the glucose monitor and algorithms come up with, you can still have strict maximum insulin doses. As well as a max accumulated dose over time. Run self-tests. Needless to say, if anything seems even a little fishy, sound an alarm instead of injecting. And the unit can check the effect, if the blood sugar does not go down as expected after injection, sound the alarm instead of injecting more. You can also have a confirmation system, where the unit says "I think you need x amount of insulin now" and the user press a confirm button before it happens. Someone unconcious will not be able to confirm, and won't get an overdose. Design the unit with failure in mind - when it fails, the failure mode is always less insulin & constant alarms. Finally, do like the aircraft industry, replace parts before they're worn out.
Open-source is used in all sorts of situations where life might be at risk. (Powerful robots, fast & heavy drones, car control systems) The medical field is not so special. I'd test a homebuilt unit very carefully of course. But weigh it against the other concern: Badly managed diabetes will easily cost you your eyes, your kidneys and your feet in less than 20 years. Eventually also your heart and your life. Which is a short & grim future for a 9-year old! Well-managed diabetes is something you can live with from childhood to pension age, with the worst effects being the constant messing with insulin, measurements and diets. Some kids can turn a strict diet & insulin scheme into 'religion', and be well-regulated. Many are not sufficiently mature and cannot.
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.
If there are several people with these homemade systems, could a study be done cheaply on them to get FDA approval and some company could start making these for people without engineering degrees?
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.
Vintage computer games and RPG books available. Email me if you're interested.
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
...he will give himself a colonoscopy with a Raspberry Pi camera attachment..
"At first, he only tried it out on his son on weekends and at night".
That sounds incredibly dangerous. If he were to become hypoglycemic because of excess insulin, then he would be asleep and not notice symptoms and so could not respond (like take in oral glucose). If you are awake, you know something has gone wrong when you become lethargic or diaphoretic or tachycardic. If you're asleep, you just slip into a coma. Home experimenting with a device is an interesting concept, but realize you are testing a home-built life-support system and if you make a mistake (like testing a machine when somebody won't notice symptoms of failure) you can kill yourself or your loved one. To me, making the decision to do this for your son crossed an ethical line by putting him at risk.
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
"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."
You're experimenting on your 9 year old son. The FDA might not stop you, but I'm pretty sure Child Protective Services would like a word with you...
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'm a type 1 diabetic and I use needles and fingerstick meters. Some people may be living in the future with automated pumps and continuous glucose monitors but most people have to use the old methods because they are the cheapest and most readily available.
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.
Yeah, but it makes internet trolls with pathetic lives feel better about themselves!
Besides, if we were worried about effective policy, well effective anything really, we wouldn't be a nation full of dipshits trying to make sex ed taboo, prevent women from accessing birth control, and proposing male infant genital mutilation as a better way to prevent cervical cancer instead of HPV vaccination.
Murka, fuck yeah! Let's do everything in our power to ensure the worst statistical outcomes for everything so that those of us who are lucky enough to not be adversely affected can be smugly morally superior!
(Anybody know if Germany is accepting refugees from Murka, or will I still need to pretend to be Muslim to get in? Will it improve my chances if my ancestors only came over here to flee the Kaiser in nineteen dickety two? I can still speak some German! I'm sure it'll come back to me! Halp!)
I really hope that I don't sound like a jerk - I am seriously not trying to be one - but my wife is a diabetic and already has an insulin pump that has a wireless connection to a glucose meter. I'm not really sure what I am missing, but it sounds like just a DIY project for something that already exists.
Curing type 1 diabetes would be very difficult once the pancreas islet cells are destroyed. Modifying gut bacteria might halt the progression towards type 1 diabetes, but it won't restore the dead tissues that produce insulin.
Current studies disagree. The foods that made you overweight are very, very relevant.
Even when controlling for weight and other habits, increased sugar consumption increases your risk of type II diabetes :
http://ajcn.nutrition.org/content/93/6/1321.full - this is just one example of many.
No, you cannot exercise yourself out of too much sugar. And another thing : 40% of normal weight people are sick with metabolic syndrome because of bad dietery habits, they just don't know it yet.
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
Both Chernobyl and Fukushima had "SERIOUS" safeguards in place.
There's an exemption to DCMA for medical device research, see http://cyberlawclinic.berkman....
Sorry to hear the infusion sites wouldn't stick. I was in a similar situation with my 5 yr old T1D. We got a pump and they continually fell off due to activity and sweat (we live in So. Cal. too). What made the sites finally stick was SkinTAC. If you ever give insulin pumps another go I would heartily suggest trying it.
Bzzzt! Thanks for playing.
Let me present you a case where you are EXACTLY WRONG! My girlfriends sister. Licensed Dietitian by the state. This is the actual certification you need to teach classes, instruction to schools, elderly groups, set hospital food guidelines, etc... about food and healthy eating? She eats probably healthier than 99% of the people in the US I would guess. Why? CAUSE SHES A DIETICIAN and knows what is in food and how your body processes it. THAT is what dieticians do. They know food, and how your body processes it. With her, she freaking LIVES it! It's almost too much...
So 1 year and a half ago, she starts getting tired. Still exercising 5-6 times a week, still eating healthy daily. Skips her physical last year, due to Master classes and scheduling. Ho hum.... Fast forward this year, goes in for physical and blood work. Ugh oh... She has type 1 Diabetes. The Dr. is extremely baffled since yea, she's a dietician, exercises extensively, and eats extremely healthy. It is what it is though, and she has 'the Diabetes' as she puts it.
Having witnessed this past weekend, just how much of a pain in the ass it is EVERY time she eats something... counting potential carbs, calculating 'short term' insulin' to counteract the spike with what she is about to eat, I wouldn't Type 1 Diabetes on anyone.
Oh yea, she's 25, has been doing marathons for several years, and now does 50 or 100 km (century ride) rides, a few times a year. Can't do that on junk food...
Your knowledge is lacking. I suggest you go get educated.
Your rant is all over the place. Learn to rant.
Shaming type 1 diabetics doesn't make much sense.
Shaming type 2 diabetics surely makes sense. It is almost certainly their own fault they are that way.
IT wasn't a rant, it was a factual analysis, and for your information.. you fucking idiot, I am a type 1 diabetic.. Get your arguments straight and think before you post!
Shaming anyone is not a good method of helping them change their circumstances, and again I tell you I am a type 1 diabetic and have learned to diet better by listening to the facts. My rant seems all over the place to you because you have no fucking idea what is a rant, what is a factual argument and what I am even talking about.. Reading comprehension is not your strong suit is it?
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.
Did you find that the switch to "human" insulins was a problem? I used to do well with beef based Regular and NPH, but Humalog and Novolog set in way too quickly, and made it very difficult to notice low blood sugars, so I pretty much had to switch to a pump to adjust my insulin more dynamically.
And *man* the stuff is more expensive. The original patent on insulin was contributed to the public domain by its disvoverer, but companies like Eli Lilly fairly quickly made new patents on refining and purifying it. And it is *amazing* how just when a stack of animal insulin patents were due to expire, and third world companies were gearing up to produce animal inuslins, suddenly this "oooh, it's human, so it *must* be bett!!!" insulin hit the market with a whole new set of patents. The price per bottle was due to drop to about $20, roughly $1/day for most Type 1 diabetics. Now it's $150/bottle, more than 6 times the anticipated price after patent expiration, and far more than the animal insulins would have cost, even with inflation and even if Eli Lilly and its colleagues had managed to retain control of their patents and prevent open market competition.
Unfortunately, I can no longer get beef or pork insulin. Even in the UK, where it was still made 10 years ago, when I asked I got a "durrh??" response from all medical staff, and a refusal by both doctors and "chemists" to even look up the product.
As usual, fat people ruin things for everyone.
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.
Learning about brewing beer, by brewing beer.
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.
We haven't had an infusion site fall off in over three years using SkinTac. It is made by Tobot group and you can find individual wipes or a bottle at most medical suppliers, some pharmacies, and of course Amazon.
Also, congratulations on an A1C of 6.5. As a caregiver of a T1D I know how diligent you had to be to obtain and maintain that number.