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.
To the point about using Glucagon in some kind of fashion...
We (EMS) give glucagon to hypoglycemic diabetic patients when we are unable to obtain IV access. I am not a doctor, but we almost always prefer to give them D50 via IV for diabetic emergencies in the field. Most of the time, they don't need to go into the ER after such intervention. As a last resort we give glucagon IM and wait, and wait... more often than not, using glucagon requires a trip to the ER. Bottom line, glucagon and the resulting liver release of glycogen doesn't seem like a healthy way to regulate blood/glucose levels long-term.
Again, I am not a doctor... But as I understand the process, your liver needs time to build up glycogen stores. If you start hammering on the liver to deliver, you may trigger other unintended consequences. It just doesn't seem like a good idea from my admittedly naive, and emergency medical point of view.
> Test strips in the US can cost $1-2 per strip; we spend about 20-30 cents per.
I have type 2, and don't know much about type 1, but I am assuming that the test strips are the same. If so, you can do better than 20-30 cents in the US.
The key is to avoid the big brand name meters, like Contour, FreeStyle, AccuCheck, and such.
Get a meter from True or ReliOn. These are available retail online and at major brick and mortar pharmacies for around $10-15 for a kit that includes the meter, some lancets, and around 10 test strips. Example: [1].
Strips are available retail for around $16-18 per 100 strips. Example: [2].
The big brand name meters are nicer. My Contour just feels higher quality than my True, and it shows the results a little faster, and the lancet device that came with it works a lot better...but the True gets the job done too, and there is no rule that says you have to use the lancet device that came with the meter.
It's easy to overspend in the US on health care. I'm on Metformin. I have insurance. If I get that prescription filled at Rite Aid a 30 day supply is about $90, with the cost to me being a $20 copay.
If I get that prescription filled at WalMart it is $4, and there is no point in bothering with insurance.
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.
Sorry to hear about your son! Hopefully your son wasn't in ketoacidosis by the time he was diagnosed, and the initial days were just training and not ICU.
My own experience with using the Dexcom G4 CGM with my 1-year old son was extremely negative. First, it was terrible to insert the sensor -- it is a clunky mechanism which would sometimes fail and leave you with a worthless sensor, and at best would leave your child in screaming pain for minutes afterwards. The sensors would often fail, or start falling off long before their 7-day promised lifespan. The adhesive caused allergic reactions which left nasty red welts, and eventually you run out of fresh places to insert them.
When they were working at their best, you would have a readout which would tell you approximate glucose level, and if you are heading up or down. However, there are no error bars, and errors can be very significant. More calibration (measuring with a strip and entering the measurement into the CGM) is not always better. Sometimes we would find it was exactly correct, sometimes it would be 50 or more points off. You still always have to measure before dosing because the accuracy just isn't there.
The biggest issue we would have is, leaving the CGM under the crib so that it was in-range, and then checking it during the night, many times we would end up with the dreaded '???' in place of a blood sugar reading, and a large gap in the chart. Dexcom blamed the CGM and replaced it twice; the problem kept recurring.
Then, the times when the CGM was not losing its mind or its signal, it would frequently start false alarming -- it does not have a hysteresis algorithm to prevent the alarm from triggering over and over again if you are lingering and constantly crossing over a threshold. As anyone with a young child knows, sleep is a priceless commodity, and unnecessary alarms going off multiple times throughout the night are a total deal breaker.
For a system which was supposed to increase glucose control and peace of mind, the G4, for our 1-year old and us, did neither. Add in the extreme cost ($350/mo for sensors, assuming they all even work) the utility just wasn't there for us. Two G4 Platinums and a few sensors now sit in the back of the closet collecting dust.
We used syringes for almost a year before switching to the OmniPod pump. It is similar physically to the G4 sensor, except it auto-inserts the cannula which helps a lot, although our youngest still cries for a couple minutes after each insertion (every 3 days). A controller acts as the glucose monitor, and also lets you enter in the carbs and it calculates the appropriate bolus. It's a nice system, except the pods also fail early about 20% of the time, they can fall off and leave rashes and puncture wounds, and they waste a huge amount of insulin for children since the minimum capacity for a 3-day pod is nearly 100 units. But it's hard to beat the convenience of dosing for a meal when you're eating out and you just have to push a few buttons.
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
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 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
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
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
German here, only limited experience of staying in the US. But at least here we have the prejudice that Sweden has the best European social system. Best schools, doctors, health care, job security, income. Is that way off from what you think? If it's partially true, and your system is at least as good as Germany's then you need to stay. Only go to the US if you are super rich. Then treatment there is better. In the middle (even upper middle) you are probably way better in Sweden.
insur. depends on your employer and 100 other factors.
some plans very little cost others maybe 25%.
if you are independently employed insur will run about $25,000 to 35,000 per year for the family.
if your son is "healthy" and is a "good" diabetic he can get by on about $6,000/year. this would be if he eats well, moderately active and maintains sugar well.
fyi if athletic this doubles or triples amount of insulin consumed.
if your son takes very poor care of himself very erratic sugar 100-350 and 5-8 extra trips to the ER and or doctor and you want the top end insulin pump, humalog, humalog pens etc then the cost could be as high as your imagination.
There isn't really a simple answer to the question. The insurance premiums themselves will depend on your job, the employee cost share (the percentage of the premiums that you pay with before tax dollars).
Or if you are buying your own plan through the ACA, the cost will depend primarily on your family income. The unsubsidized cost depends on zip code, sex, age, and whether you smoke tobacco, but assume $300 per month per adult, $150 per month per child. The subsidies which reduce the cost of premiums and also out-of-pocket costs, they start at effectively 100% if you earn $0, and phase out as your family income goes up to about $80,000.
Once you've paid the premiums, then you start paying for the care you use in terms of deductibles, co-pays, co-insurance, up to some annual out-of-pocket maximum. The details depend on the plan, but the basic rule is you can pay more premiums and your out-of-pocket maximums will decrease. But, doing the math, you can rarely "save" month by paying more in premiums for lower maximums, even if you know you will max it out, since insurers know that it's mostly sick people who will opt for the higher premiums in the first place. But it is convenient to only have to send one check a month, instead of constantly writing checks for every script, appointment, etc.
If your co-pay is, let's say, $25, expect to be paying that amount ~15x every 3 months for T1D. Everything is it's own script (blood strips, ketone strips, needles, glycogon, insulin, lancets, etc.) so you get hit with a lot of individual $25 co-pays, although they are not all being filled every month.
If you end up having to go to the ER after a particularly bad low, expect that could max out your out-of-pocket expenses for the rest of the year. So keep an eye on that annual out-of-pocket maximum, which typically will be $5,000 - $7,500. After you hit that maximum, all other benefits are paid 100% by insurance. For a particularly bad year, it helps to note, the family maximum annual out-of-pocket will be 2x the individual maximum.
Another factor is if you want to use the latest tech (CGM, Pods) your insurance likely will cover it, but not always, and there's probably a 20% "durable equipment" co-pay (which counts toward your maximum). This can increase costs for a year you are buying new expensive equipment to get started.
If you are getting insurance through work, and you lose your job, you are allowed to continue paying the full share of the premiums and keep your insurance, through a program called COBRA. That's worth it especially if you've maxed out your out-of-pocket and there are a few months left in the year where you can get 100% coverage. Otherwise, it's usually cheaper to switch to an ACA plan.
Bottom line, fully un-subsidized insurance costs for a family actually using the benefits (paying most if not all of the out-of-pocket maximums) are between $20k - $30k per year. Most Americans don't realize this because the ~$15k premiums are part of their pay package but don't really show up clearly on the pay stub.
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.
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.
[+] [-] jawngee|9 years ago|reply
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.
[+] [-] monkmartinez|9 years ago|reply
We (EMS) give glucagon to hypoglycemic diabetic patients when we are unable to obtain IV access. I am not a doctor, but we almost always prefer to give them D50 via IV for diabetic emergencies in the field. Most of the time, they don't need to go into the ER after such intervention. As a last resort we give glucagon IM and wait, and wait... more often than not, using glucagon requires a trip to the ER. Bottom line, glucagon and the resulting liver release of glycogen doesn't seem like a healthy way to regulate blood/glucose levels long-term.
Again, I am not a doctor... But as I understand the process, your liver needs time to build up glycogen stores. If you start hammering on the liver to deliver, you may trigger other unintended consequences. It just doesn't seem like a good idea from my admittedly naive, and emergency medical point of view.
[+] [-] tzs|9 years ago|reply
I have type 2, and don't know much about type 1, but I am assuming that the test strips are the same. If so, you can do better than 20-30 cents in the US.
The key is to avoid the big brand name meters, like Contour, FreeStyle, AccuCheck, and such.
Get a meter from True or ReliOn. These are available retail online and at major brick and mortar pharmacies for around $10-15 for a kit that includes the meter, some lancets, and around 10 test strips. Example: [1].
Strips are available retail for around $16-18 per 100 strips. Example: [2].
The big brand name meters are nicer. My Contour just feels higher quality than my True, and it shows the results a little faster, and the lancet device that came with it works a lot better...but the True gets the job done too, and there is no rule that says you have to use the lancet device that came with the meter.
It's easy to overspend in the US on health care. I'm on Metformin. I have insurance. If I get that prescription filled at Rite Aid a 30 day supply is about $90, with the cost to me being a $20 copay.
If I get that prescription filled at WalMart it is $4, and there is no point in bothering with insurance.
[1] https://www.amazon.com/TRUE2go-Blood-Glucose-Starter-Kit/dp/...
[2] https://www.amazon.com/TRUEtest-Test-Strips-100-Count/dp/B00...
[+] [-] srameshc|9 years ago|reply
[+] [-] jacalata|9 years ago|reply
[+] [-] Symbiote|9 years ago|reply
If I'm looking at the right advice [1], insulin is £1.50-£3 ($2-4) in the UK, so that may be one possible source.
(The UK suppliers I found don't have information on overseas delivery on their sites; it's probably worth a phone call.)
[1] http://www.diabetes.co.uk/insulin-pumps/buying-an-insulin-pu...
[+] [-] zaroth|9 years ago|reply
My own experience with using the Dexcom G4 CGM with my 1-year old son was extremely negative. First, it was terrible to insert the sensor -- it is a clunky mechanism which would sometimes fail and leave you with a worthless sensor, and at best would leave your child in screaming pain for minutes afterwards. The sensors would often fail, or start falling off long before their 7-day promised lifespan. The adhesive caused allergic reactions which left nasty red welts, and eventually you run out of fresh places to insert them.
When they were working at their best, you would have a readout which would tell you approximate glucose level, and if you are heading up or down. However, there are no error bars, and errors can be very significant. More calibration (measuring with a strip and entering the measurement into the CGM) is not always better. Sometimes we would find it was exactly correct, sometimes it would be 50 or more points off. You still always have to measure before dosing because the accuracy just isn't there.
The biggest issue we would have is, leaving the CGM under the crib so that it was in-range, and then checking it during the night, many times we would end up with the dreaded '???' in place of a blood sugar reading, and a large gap in the chart. Dexcom blamed the CGM and replaced it twice; the problem kept recurring.
Then, the times when the CGM was not losing its mind or its signal, it would frequently start false alarming -- it does not have a hysteresis algorithm to prevent the alarm from triggering over and over again if you are lingering and constantly crossing over a threshold. As anyone with a young child knows, sleep is a priceless commodity, and unnecessary alarms going off multiple times throughout the night are a total deal breaker.
For a system which was supposed to increase glucose control and peace of mind, the G4, for our 1-year old and us, did neither. Add in the extreme cost ($350/mo for sensors, assuming they all even work) the utility just wasn't there for us. Two G4 Platinums and a few sensors now sit in the back of the closet collecting dust.
We used syringes for almost a year before switching to the OmniPod pump. It is similar physically to the G4 sensor, except it auto-inserts the cannula which helps a lot, although our youngest still cries for a couple minutes after each insertion (every 3 days). A controller acts as the glucose monitor, and also lets you enter in the carbs and it calculates the appropriate bolus. It's a nice system, except the pods also fail early about 20% of the time, they can fall off and leave rashes and puncture wounds, and they waste a huge amount of insulin for children since the minimum capacity for a 3-day pod is nearly 100 units. But it's hard to beat the convenience of dosing for a meal when you're eating out and you just have to push a few buttons.
[+] [-] timomer|9 years ago|reply
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
[+] [-] oskarpearson|9 years ago|reply
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|9 years ago|reply
[+] [-] brudgers|9 years ago|reply
[+] [-] robobro|9 years ago|reply
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
[+] [-] hising|9 years ago|reply
[+] [-] erikb|9 years ago|reply
[+] [-] superdog683|9 years ago|reply
insur. depends on your employer and 100 other factors. some plans very little cost others maybe 25%. if you are independently employed insur will run about $25,000 to 35,000 per year for the family.
if your son is "healthy" and is a "good" diabetic he can get by on about $6,000/year. this would be if he eats well, moderately active and maintains sugar well. fyi if athletic this doubles or triples amount of insulin consumed. if your son takes very poor care of himself very erratic sugar 100-350 and 5-8 extra trips to the ER and or doctor and you want the top end insulin pump, humalog, humalog pens etc then the cost could be as high as your imagination.
[+] [-] robobro|9 years ago|reply
Consider applying for medicare or similar?
[+] [-] Bromskloss|9 years ago|reply
[+] [-] zaroth|9 years ago|reply
Or if you are buying your own plan through the ACA, the cost will depend primarily on your family income. The unsubsidized cost depends on zip code, sex, age, and whether you smoke tobacco, but assume $300 per month per adult, $150 per month per child. The subsidies which reduce the cost of premiums and also out-of-pocket costs, they start at effectively 100% if you earn $0, and phase out as your family income goes up to about $80,000.
Once you've paid the premiums, then you start paying for the care you use in terms of deductibles, co-pays, co-insurance, up to some annual out-of-pocket maximum. The details depend on the plan, but the basic rule is you can pay more premiums and your out-of-pocket maximums will decrease. But, doing the math, you can rarely "save" month by paying more in premiums for lower maximums, even if you know you will max it out, since insurers know that it's mostly sick people who will opt for the higher premiums in the first place. But it is convenient to only have to send one check a month, instead of constantly writing checks for every script, appointment, etc.
If your co-pay is, let's say, $25, expect to be paying that amount ~15x every 3 months for T1D. Everything is it's own script (blood strips, ketone strips, needles, glycogon, insulin, lancets, etc.) so you get hit with a lot of individual $25 co-pays, although they are not all being filled every month.
If you end up having to go to the ER after a particularly bad low, expect that could max out your out-of-pocket expenses for the rest of the year. So keep an eye on that annual out-of-pocket maximum, which typically will be $5,000 - $7,500. After you hit that maximum, all other benefits are paid 100% by insurance. For a particularly bad year, it helps to note, the family maximum annual out-of-pocket will be 2x the individual maximum.
Another factor is if you want to use the latest tech (CGM, Pods) your insurance likely will cover it, but not always, and there's probably a 20% "durable equipment" co-pay (which counts toward your maximum). This can increase costs for a year you are buying new expensive equipment to get started.
If you are getting insurance through work, and you lose your job, you are allowed to continue paying the full share of the premiums and keep your insurance, through a program called COBRA. That's worth it especially if you've maxed out your out-of-pocket and there are a few months left in the year where you can get 100% coverage. Otherwise, it's usually cheaper to switch to an ACA plan.
Bottom line, fully un-subsidized insurance costs for a family actually using the benefits (paying most if not all of the out-of-pocket maximums) are between $20k - $30k per year. Most Americans don't realize this because the ~$15k premiums are part of their pay package but don't really show up clearly on the pay stub.
[+] [-] throwaway_exer|9 years ago|reply
[deleted]
[+] [-] erikb|9 years ago|reply
[+] [-] onetwotree|9 years ago|reply
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 :-)
[+] [-] whatnotests|9 years ago|reply
I hope his work can help many people who are in need of this type of tool.
[+] [-] unknown|9 years ago|reply
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[+] [-] unknown|9 years ago|reply
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[+] [-] tiatia|9 years ago|reply
[+] [-] known|9 years ago|reply
[+] [-] letitleak|9 years ago|reply
[deleted]
[+] [-] unknown|9 years ago|reply
[deleted]