8 ms·

A DIY diabetes kit

109 points by kawera 10y ago

brudgers 10y ago
Open Artificial Pancreas home: https://openaps.org/ https://openaps.org/
letitleak 10y ago
Tldr- a new soylent with nutrition levels similar to mc donalds. Seriously though, this title (and the one the BBC is using) is gibberish compared to past articles on the same subject. Are you talking about a monitor, anartificial pancreas or a DIY project with serious side effects?
known 10y ago
It's about type 1 diabetes
jawngee 10y ago
My son was just recently diagnosed type 1 about 4 months ago (exactly on his 1st birthday, shitty birthday). Unfortunately, we live in Vietnam where access to even basics like pumps, let alone CGM, is non-existant, or incredibly hard. We had to fly to Singapore to get a pump, and then fly back every three months to get new supplies. CGM is a pipe dream. One thing this article doesn't touch on, which is unfortunate, is how much of a nightmare modern medical systems make diabetes. In the US, insurers decide what pumps you get, what CGM device you might be able to get, even what insulin you are using. I see it everyday on the support groups I'm on. And the costs are astronomical. In Vietnam, we get our son's insulin for $12 a vial. The same vial in the US is about $400 or more (insured price). Test strips in the US can cost $1-2 per strip; we spend about 20-30 cents per. I am very hopeful about the bionic pancreas though, a device that does what these DIY systems do; but also delivers glucagon as well as insulin. There are also some stem cell trials that are very interesting too. I'm hoping that by the time this kid hits college, his care is automated as possible, if not outright cured.
- srameshc 10y ago
  I still don't understand why insulin is so regulated and expensive in US. I feel sorry for people with Type 1, Type 2 who many a times have to skip their insulin dose. I think it should be freely available over the counter and there should be some cheap availability for such a common drug.
  - maxerickson 10y ago
    Walmart sells older forms over the counter. http://www.npr.org/sections/health-shots/2015/12/14/459047328/you-can-buy-insulin-without-a-prescription-but-should-you http://www.npr.org/sections/health-shots/2015/12/14/45904732... Pricing info isn't super apparent, I guess it probably isn't a whole lot more than the $25 a vial suggested in various articles and comments about it.
    - aab0 10y ago
      It's not. I'm not diabetic, but there's some interesting research on intranasal insulin and cognition, so I thought I might try it out. At my local east coast Walmart, I bought on March 13th 2016 a 10ml vial of Novolin R insulin for $24.88. (No prescription required.)
      - monkmartinez 10y ago
        > intranasal insulin and cognition Please elaborate...
        aab0 10y ago
        "Effect of intranasal insulin on cognitive function: a systematic review", Shemesh et al 2012 http://press.endocrine.org/doi/full/10.1210/jc.2011-1802 http://press.endocrine.org/doi/full/10.1210/jc.2011-1802 https://www.researchgate.net/profile/Assaf_Rudich/publication/51871998_Effect_of_Intranasal_Insulin_on_Cognitive_Function_A_Systematic_Review/links/53d20c620cf2a7fbb2e96305.pdf https://www.researchgate.net/profile/Assaf_Rudich/publicatio...
oskarpearson 10y ago
Good to see this here. I'm one of the developers (though more on the radio comms side, rather than on the glucose control side. See http://github.com/oskarpearson/mmeowlink/wiki http://github.com/oskarpearson/mmeowlink/wiki for info). My wife's been on the software since last September, and it's made a huge difference to us. If you've any questions, ask here or grab me on twitter at @oskarpearson
- monkmartinez 10y ago
  If I wanted to get something like this setup for a homeless person... what would I need to do?
  - oskarpearson 10y ago
    The biggest problem is going to be expense, followed by reliability and power when out-and-about. I'm not sure where you are, but in the USA compatible pumps probably start at around $1,000. That doesn't include the monthly cost of the CGMS sensors, which is also significant. If you're in a country with universal healthcare, and the healthcare provider is willing to cover the CGMS sensors you might have success. (Some govt healthcare services will cover CGMS sensors for people that can't tell when they are hypoglycemic.) If the person with diabetes (PWD) is very mobile, reduced size and weight will have to be at the forefront of your thinking. However, that requires the most expensive OpenAPS hardware (the Intel Edison - see the mmeowlink wiki). If the PWD is ok with a larger device due to a bigger battery, you could use cheaper hardware (Pi zero and a 20,000mah battery). It'll still need daily charging, though. One idea: you might find running things overnight only might have an advantage, depending on whether they have a stable relationship with a shelter. The system would then cover them for a reasonable amount of time every day without the challenge of waterproofing, batteries, etc. If this is feasible, the best place to start is with the simplest config, as documented at https://github.com/openaps/docs/blob/master/docs/docs/walkthrough/phase-0/hardware.md https://github.com/openaps/docs/blob/master/docs/docs/walkth... Let me know if I can be of any support. My details are in my profile. Alternatively, you can find us on the intend-to-bolus channel on gitter.
    - 10y ago
deleted 10y ago
[deleted]
hising 10y ago
Open question - What is the actual cost of living with Diabetes type 1 in the US with a good health insurance? The reason I am asking is I have a 10-year old son with type 1 and we are thinking of moving to US (from Sweden) and would like to estimate the actual cost of living with diabetes in the US in order to make a real life calculation of what it would actually cost us per month. Any tips would be appreciated - if you wanna take it privately - message me on Twitter (@hising) or send me an email - mattias at ridgestreet dot se
- throwaway_exer 10y ago
  > good health insurance In the USA, that generally means being a civil service or Microsoft employee. Anything else involves limits and co-pays, so find out in advance.
- Bromskloss 10y ago
  Would an insurance ever cover something that is already known? That at least doesn't sound like an insurance in the usual sense of the word.
  - 0xcde4c3db 10y ago
    In the US, "health insurance" mostly isn't about actual insurance, it's just part of the evolved process of obtaining care with a degree of oversight and (semi-)centralized records. You can pay out-of-pocket, in much the same way that you can represent yourself in court: nobody can deny you the option, but the system isn't really set up to operate that way and something will probably go wrong when you try it.
    - coredog64 10y ago
      That's not entirely true. When I was uninsured, I was able to negotiate significant cash discounts with many out-patient providers. They had a very good idea what the overhead of billing an insurance provider was and were willing to lop that off their charge. Where it gets tricky is with in-patient care. There I would agree that it's more like representing yourself in court.
whatnotests 10y ago
I had the chance to meet and interview the author of the open source tool (Tim Omer). Super smart, motivated and clearly capable. I hope his work can help many people who are in need of this type of tool.
erikb 10y ago
Interesting how they discuss risks in open source. If one can make a guess from other software it is very likely that open source at least in the future will outperform proprietary solutions. Standardization organizations should start to think about how to make their certification processes attractive for FOSS projects, imo.
robobro 10y ago
Type 1 diabetic here: diagnosed at age 14, almost 22 now. I use xdrip with a CGM and I have to say, it's been the best thing for my care (after insulin, lol). The main challenge of diabetes is keeping your blood sugar in range, not too high, and not too low, and getting it back in range if it deviates too far. Blood sugars dropping too low during exercise is a major concern as it can result in seizures and worse. Thanks to the combination of my dexcom G4 + Android + Xdrip + smartwatch, I can always get a pretty good estimate of where my glucose is, and thus minimize the risks and harm from my (chronic, uncurable) condition. Definitely a great case for open source development for propreitary hardware. The CGM has helped me even more than my $10,000 insulin pump :X
deleted 10y ago
[deleted]
deleted 10y ago
[deleted]
tiatia 10y ago
Any investor here with an interested in diabetes/medical devices?
onetwotree 10y ago
My girlfriend has type 1 diabetes and uses this. It's been a huge improvement in her life - as others have mentioned, it's really like the best thing since insulin. One thing that's been really awesome to see is how T1D patients and parents with little or no experience with FOSS have taken this stuff: "You mean you guys just made this amazing thing 100% for free?!?!?!". It's like watching the birth of open source all over again :-) The T1D hacking movement is huge - for example, my GF and I recently replaced the batteries in her CGM transmitter (you're not supposed to be able to do this, so it involved a dremel and solder and playing the tiny fingers game). The older transmitters last about 6 months, and then you have to order them through a horrible medical supply company that knows you're not their real customer (your insurance company and device manufacturers are) so this is a big deal. An even bigger deal: the newer Dexcom transmitters turn off after 3 months. Dexcom claims that new features mean they need more juice, but T1D hackers reversing the new protocol discovered that the app they come with turns them off. Fortunately, it seems possible to turn them back on without dremels and the tiny finger game. A closed loop APS is the next step for us :-)
timomer 10y ago
Hello all, There are many areas the article does not cover, but this is expected when writing space is limited. Main areas that I feel need more coverage... 1) The community itself, it is overwhelming to see how much work has been done by people in their spare time. Many of these developers go unnamed and provide some amazing work - I would not be able to complete my app without this community, I'm just putting the puzzle of community work together and filling in the blanks where needed. 2) Access to tech, it is almost insulting to see how may Diabetics cannot access Pumps and CGMs, or can access one and not the other. The cost for such systems and limited access is not justified. 3) Why, when we do own the required tech purchased from our own money do we then have to "hack" such devices to access the data that they have about MY body!? 4) The dangers of the community work, this is no riskier I say than commercial systems but this subject must be openly discussed in the community to be sure we understand and limit possible risks 5) I agree with the comments about glucagon, this should ideally be a worse case treatment. Why do we need a system that can provide glucagon when early alerts from an APS can notify the patient that a carb treatment is needed. Let's stop trying to find a 100% solution and produce something that covers 60% of our needs now

109 points by kawera 10y ago

Open Artificial Pancreas home: https://openaps.org/ https://openaps.org/

Tldr- a new soylent with nutrition levels similar to mc donalds. Seriously though, this title (and the one the BBC is using) is gibberish compared to past articles on the same subject. Are you talking about a monitor, anartificial pancreas or a DIY project with serious side effects?

known 10y ago

It's about type 1 diabetes

jawngee 10y ago

My son was just recently diagnosed type 1 about 4 months ago (exactly on his 1st birthday, shitty birthday). Unfortunately, we live in Vietnam where access to even basics like pumps, let alone CGM, is non-existant, or incredibly hard. We had to fly to Singapore to get a pump, and then fly back every three months to get new supplies. CGM is a pipe dream. One thing this article doesn't touch on, which is unfortunate, is how much of a nightmare modern medical systems make diabetes. In the US, insurers decide what pumps you get, what CGM device you might be able to get, even what insulin you are using. I see it everyday on the support groups I'm on. And the costs are astronomical. In Vietnam, we get our son's insulin for $12 a vial. The same vial in the US is about $400 or more (insured price). Test strips in the US can cost $1-2 per strip; we spend about 20-30 cents per. I am very hopeful about the bionic pancreas though, a device that does what these DIY systems do; but also delivers glucagon as well as insulin. There are also some stem cell trials that are very interesting too. I'm hoping that by the time this kid hits college, his care is automated as possible, if not outright cured.

srameshc 10y ago
I still don't understand why insulin is so regulated and expensive in US. I feel sorry for people with Type 1, Type 2 who many a times have to skip their insulin dose. I think it should be freely available over the counter and there should be some cheap availability for such a common drug.
- maxerickson 10y ago
  Walmart sells older forms over the counter. http://www.npr.org/sections/health-shots/2015/12/14/459047328/you-can-buy-insulin-without-a-prescription-but-should-you http://www.npr.org/sections/health-shots/2015/12/14/45904732... Pricing info isn't super apparent, I guess it probably isn't a whole lot more than the $25 a vial suggested in various articles and comments about it.
  - aab0 10y ago
    It's not. I'm not diabetic, but there's some interesting research on intranasal insulin and cognition, so I thought I might try it out. At my local east coast Walmart, I bought on March 13th 2016 a 10ml vial of Novolin R insulin for $24.88. (No prescription required.)
    - monkmartinez 10y ago
      > intranasal insulin and cognition Please elaborate...
      - aab0 10y ago
        "Effect of intranasal insulin on cognitive function: a systematic review", Shemesh et al 2012 http://press.endocrine.org/doi/full/10.1210/jc.2011-1802 http://press.endocrine.org/doi/full/10.1210/jc.2011-1802 https://www.researchgate.net/profile/Assaf_Rudich/publication/51871998_Effect_of_Intranasal_Insulin_on_Cognitive_Function_A_Systematic_Review/links/53d20c620cf2a7fbb2e96305.pdf https://www.researchgate.net/profile/Assaf_Rudich/publicatio...

oskarpearson 10y ago

Good to see this here. I'm one of the developers (though more on the radio comms side, rather than on the glucose control side. See http://github.com/oskarpearson/mmeowlink/wiki http://github.com/oskarpearson/mmeowlink/wiki for info). My wife's been on the software since last September, and it's made a huge difference to us. If you've any questions, ask here or grab me on twitter at @oskarpearson

monkmartinez 10y ago
If I wanted to get something like this setup for a homeless person... what would I need to do?
- oskarpearson 10y ago
  The biggest problem is going to be expense, followed by reliability and power when out-and-about. I'm not sure where you are, but in the USA compatible pumps probably start at around $1,000. That doesn't include the monthly cost of the CGMS sensors, which is also significant. If you're in a country with universal healthcare, and the healthcare provider is willing to cover the CGMS sensors you might have success. (Some govt healthcare services will cover CGMS sensors for people that can't tell when they are hypoglycemic.) If the person with diabetes (PWD) is very mobile, reduced size and weight will have to be at the forefront of your thinking. However, that requires the most expensive OpenAPS hardware (the Intel Edison - see the mmeowlink wiki). If the PWD is ok with a larger device due to a bigger battery, you could use cheaper hardware (Pi zero and a 20,000mah battery). It'll still need daily charging, though. One idea: you might find running things overnight only might have an advantage, depending on whether they have a stable relationship with a shelter. The system would then cover them for a reasonable amount of time every day without the challenge of waterproofing, batteries, etc. If this is feasible, the best place to start is with the simplest config, as documented at https://github.com/openaps/docs/blob/master/docs/docs/walkthrough/phase-0/hardware.md https://github.com/openaps/docs/blob/master/docs/docs/walkth... Let me know if I can be of any support. My details are in my profile. Alternatively, you can find us on the intend-to-bolus channel on gitter.
  - 10y ago

deleted 10y ago

[deleted]

hising 10y ago

Open question - What is the actual cost of living with Diabetes type 1 in the US with a good health insurance? The reason I am asking is I have a 10-year old son with type 1 and we are thinking of moving to US (from Sweden) and would like to estimate the actual cost of living with diabetes in the US in order to make a real life calculation of what it would actually cost us per month. Any tips would be appreciated - if you wanna take it privately - message me on Twitter (@hising) or send me an email - mattias at ridgestreet dot se

throwaway_exer 10y ago
> good health insurance In the USA, that generally means being a civil service or Microsoft employee. Anything else involves limits and co-pays, so find out in advance.
Bromskloss 10y ago
Would an insurance ever cover something that is already known? That at least doesn't sound like an insurance in the usual sense of the word.
- 0xcde4c3db 10y ago
  In the US, "health insurance" mostly isn't about actual insurance, it's just part of the evolved process of obtaining care with a degree of oversight and (semi-)centralized records. You can pay out-of-pocket, in much the same way that you can represent yourself in court: nobody can deny you the option, but the system isn't really set up to operate that way and something will probably go wrong when you try it.
  - coredog64 10y ago
    That's not entirely true. When I was uninsured, I was able to negotiate significant cash discounts with many out-patient providers. They had a very good idea what the overhead of billing an insurance provider was and were willing to lop that off their charge. Where it gets tricky is with in-patient care. There I would agree that it's more like representing yourself in court.

whatnotests 10y ago

I had the chance to meet and interview the author of the open source tool (Tim Omer). Super smart, motivated and clearly capable. I hope his work can help many people who are in need of this type of tool.

erikb 10y ago

Interesting how they discuss risks in open source. If one can make a guess from other software it is very likely that open source at least in the future will outperform proprietary solutions. Standardization organizations should start to think about how to make their certification processes attractive for FOSS projects, imo.

robobro 10y ago

Type 1 diabetic here: diagnosed at age 14, almost 22 now. I use xdrip with a CGM and I have to say, it's been the best thing for my care (after insulin, lol). The main challenge of diabetes is keeping your blood sugar in range, not too high, and not too low, and getting it back in range if it deviates too far. Blood sugars dropping too low during exercise is a major concern as it can result in seizures and worse. Thanks to the combination of my dexcom G4 + Android + Xdrip + smartwatch, I can always get a pretty good estimate of where my glucose is, and thus minimize the risks and harm from my (chronic, uncurable) condition. Definitely a great case for open source development for propreitary hardware. The CGM has helped me even more than my $10,000 insulin pump :X

deleted 10y ago

[deleted]

deleted 10y ago

[deleted]

tiatia 10y ago

Any investor here with an interested in diabetes/medical devices?

onetwotree 10y ago

My girlfriend has type 1 diabetes and uses this. It's been a huge improvement in her life - as others have mentioned, it's really like the best thing since insulin. One thing that's been really awesome to see is how T1D patients and parents with little or no experience with FOSS have taken this stuff: "You mean you guys just made this amazing thing 100% for free?!?!?!". It's like watching the birth of open source all over again :-) The T1D hacking movement is huge - for example, my GF and I recently replaced the batteries in her CGM transmitter (you're not supposed to be able to do this, so it involved a dremel and solder and playing the tiny fingers game). The older transmitters last about 6 months, and then you have to order them through a horrible medical supply company that knows you're not their real customer (your insurance company and device manufacturers are) so this is a big deal. An even bigger deal: the newer Dexcom transmitters turn off after 3 months. Dexcom claims that new features mean they need more juice, but T1D hackers reversing the new protocol discovered that the app they come with turns them off. Fortunately, it seems possible to turn them back on without dremels and the tiny finger game. A closed loop APS is the next step for us :-)

timomer 10y ago

Hello all, There are many areas the article does not cover, but this is expected when writing space is limited. Main areas that I feel need more coverage... 1) The community itself, it is overwhelming to see how much work has been done by people in their spare time. Many of these developers go unnamed and provide some amazing work - I would not be able to complete my app without this community, I'm just putting the puzzle of community work together and filling in the blanks where needed. 2) Access to tech, it is almost insulting to see how may Diabetics cannot access Pumps and CGMs, or can access one and not the other. The cost for such systems and limited access is not justified. 3) Why, when we do own the required tech purchased from our own money do we then have to "hack" such devices to access the data that they have about MY body!? 4) The dangers of the community work, this is no riskier I say than commercial systems but this subject must be openly discussed in the community to be sure we understand and limit possible risks 5) I agree with the comments about glucagon, this should ideally be a worse case treatment. Why do we need a system that can provide glucagon when early alerts from an APS can notify the patient that a carb treatment is needed. Let's stop trying to find a 100% solution and produce something that covers 60% of our needs now