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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
by 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 agoI 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 agoWalmart 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 agoIt'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...
- jawngee 10y agoYeah that's the old school NPH variety. While you can certainly manage with it, you'll not manage well. Modern diabetes management includes either pumping or multiple daily injections (MDI). With MDI, you use a long acting insulin as a basal, or background, insulin. And then you'll use a rapid insulin to bolus for meals and to make corrections for unexpected spikes. The pump is similar to MDI but you only use rapid insulin and the pump delivers a steady basal stream throughout the day, and you still bolus at meals and for unexpected spikes. These two things allow diabetics to eat whatever they want. We did the old school way for the first few weeks because that's the only way the doctors in Vietnam knew how to do it. It really sucked numbers wise.
- jacalata 10y agoIt seems relatively defendable - it is far, far more dangerous than many prescription only drugs (eg: birth control), and most people will not be able to work out how much they need without seeing a doctor first.
- brudgers 10y agoMy understanding is that Dana Lewis developed the pre-cursors to OpenAPS because she had to perform dosage calculations several times a day. Often this was in the middle of the night. And getting it wrong could be fatal. Going further, the calculations are rule of thumb and generic and each person has to make adjustments based on intuitions about their metabolism, what they ate, what they plan to eat, what activity they anticipate, and when they last dosed. It's every day, for the rest of their life. [Source] Scott Hanselman interviews OpenAPS hacker Dana Lewis: http://www.hanselminutes.com/514/the-open-artificial-pancreas-system-openaps-project-with-dana-m-lewis http://www.hanselminutes.com/514/the-open-artificial-pancrea...
- jacalata 10y agoYes, I have lived with relatives with diabetes and understand that it's quite complex. I don't think anyone with diabetes would suggest that it should be ok to just start taking insulin without a doctor involved, which is (to my understanding) the basic argument for whether a drug should require a prescription or not. You can make a separate argument about whether it should be a longer prescription, or about the failings of a system where seeing a doctor at all is prohibitive for some people, or the fact that the medication is outrageously expensive (which is not directly related to the need for a prescription at all).
- deleted 10y ago[deleted]
- kennywinker 10y agoBirth control is a bad example, because as far as I can find it's prescription only for sex-negative cultural reasons, not for medical reasons. It is exceedingly easy to overdose on tylenol, and yet it's available without any controls.
- tdeschamps 10y agoMaybe it's because the production process (protein separation, purification) has not been improved for a long time and the market is controlled by two big drug makers.
- robobro 10y agoThank you... Insulin is very expensive: more than my rent, just to stay alive, even with insurance :(
- jacalata 10y agoBy "modern medical systems" do you mean "the insurance setup in the USA" or something else that exists in multiple countries?
- monkmartinez 10y agoTo 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.
- et2o 10y agoAlso not an MD (yet) so grain of salt, but from my experience: Yeah, D50 is a more direct way to get glucose into the blood stream. It does take a lot more time to mobilize liver stores of glycogen. But using glycogen stores isn't necessarily bad for you metabolically. Glucagon is used by your body everyday during periods of fasting between meals to maintain a minimum blood sugar. Your glycogen stores can supply enough glucose for several hours of fasting before you turn to other routes of metabolism, which would next preferentially be fatty acids. Glucagon IM injectors are given to lots of diabetics to prevent hypoglycemic emergency if drinking fruit juice or something isn't enough.
- et2o 10y agoAnother interesting thing is that your body has three signaling mechanisms to maintain a minimum blood glucose (can't live without it!). First glucagon, then cortisol, then epinephrine all function on a variety of pathways to generate glucose.
- monkmartinez 10y agoWe agree on the metabolic reasoning! I freely admit that 98% of my experience with diabetes has been in the field dealing with hypo or hyperglycemic patients. Obviously, we are talking about diabetics that aren't the most compliant with their disease. However, even "good" diabetics have bad runs with questionable supplies, or any host of issues (sickness, environment, diet change, etc.) I happen to live where a very, very large cluster of diabetics are studied. We do a lot of diabetic emergencies... I can count on my hands how many times we've used glucagon. Like I said, we can treat and release with D50. Not so with Glucagon. If "they" figure out the delicate balance between all the systems in order to use glucagon the same way it is regulated in a non-diabetic; it stands to reason that "they" should have a way to repair/replace the islets of Langerhans as the first priority, don't you think?
- Symbiote 10y agoWill no-one post/courier the supplies to Vietnam? That would surely be cheaper than a flight. 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-pump.html http://www.diabetes.co.uk/insulin-pumps/buying-an-insulin-pu...
- oskarpearson 10y agoNote that insulin is pretty temperature sensitive, and needs specialist shipping so that it doesn't end up boiling on a tarmac somewhere. That said, we found pump-compatible insulin on Phi-Phi Island in Thailand, so I expect insulin is possibly not the core issue. The other things (like infusion sets) should be easy to ship. The UK suppliers generally won't sell them unless you have a UK pump and an account with them, though. It could probably be worked around though, using some sort of international forwarding arrangement.
- tzs 10y ago> 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. [1] https://www.amazon.com/TRUE2go-Blood-Glucose-Starter-Kit/dp/B002CGT092/ref=sr_1_3_a_it?ie=UTF8&qid=1468695332&sr=8-3&keywords=diabetes+meters&refinements=p_89%3ATrue https://www.amazon.com/TRUE2go-Blood-Glucose-Starter-Kit/dp/... [2] https://www.amazon.com/TRUEtest-Test-Strips-100-Count/dp/B002CGT09M/ref=pd_sim_121_1?ie=UTF8&dpID=51FneE0VpFL&dpSrc=sims&preST=_AC_UL160_SR160%2C160_&psc=1&refRID=9QKRF4DEFFXQTK2075EF https://www.amazon.com/TRUEtest-Test-Strips-100-Count/dp/B00...
- a3n 10y ago> you can do better than 20-30 cents in the US. > The key is to avoid the big brand name meters, > 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]. Agree. When I shopped for a meter at my local Kroger pharmacy (King Soopers here) my only decision was how much are the strips. Mine is an OnSync, and the strips are branded Kroger; the in-store pharmacist told me that Kroger worked with a manufacturer to make an affordable setup. Everyone has their needs and such, but all things being equal, shop for the cheapest strips, and then the meter that takes them.
- tcdent 10y ago
- zaroth 10y agoSorry 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.