Hello everyone, my name is James and I’m 18 with type 1 diabetes. My situation is a little complicated but I’d like to explain. Along with having type 1 diabetes I also have bipolar disorder and am trying to recover from a recent episode I had. I am struggling at work and I need to be able to have about 3 months to rest my mind and get myself back on track but the issue is I need my supplies. I currently have benefits from my work and so I am wondering if any of you know how I could stockpile diabetic supplies. I really don’t where to start or how to, as my family has told me that stockpiling isn’t possible. Any info would be greatly appreciated, thank you.
Please let us know what devices you use to mange your diabetes and we can get back to you on how we try to stockpile these devices.
Hi James, and welcome to the forum! That’s a tough diagnosis to manage alongside T1D, and you certainly have my sympathy and respect for the effort you’re making.
For an immediate answer, I think a lot of us end up “stockpiling” insulin just because your dose varies all the time, so any prescription is going to be an estimate of your daily requirement, and you want that estimate to reflect the high end of that estimate because running short is so dangerous. As a result you end up with some extra at the end of your prescription period and over time you build up a buffer against emergencies. Something similar can happen with other supplies, like pump stuff, meter strips, CGM supplies, etc, though they aren’t exactly the same. I’m not sure which if any of those things you need.
But as that scenario indicates, it takes a while to build up a month or three worth of extras and I don’t know of any way to do it rapidly, which kinda brings me to the second concern.
It sounds like you’re looking at being without insurance for a few months, and as I’m sure you’re aware as a T1 that puts you in a pretty risky situation given how ridiculously expensive this stuff is. We hear a lot of stories recently of T1s who lose coverage and end up dying because of rationing their insulin. So I’m a little concerned about advising you on the practicalities of how to go about managing this, when my greater concern is to make sure you’re really aware of the dangers of doing it at all.
If you do HAVE to do it—if for instance your job situation falls apart or whatever—and you find yourself without a stockpile, or not enough of one, then you should be aware that you can get the old-style R and NPH insulins without prescription for a reasonable price from Walmart. It’s not the same as the modern analog insulins most of us have been using for decades, so you need to have some information on how to use it safely, but the Interwebz are your friend, and it’s better than the risks associated with people trying to ration and “run high” because they can’t afford modern insulins. Like I say, we’ve seen too many stories of people dying at that game recently, particularly young people, so whatever you do let’s be sure you don’t end up as one of those statistics!
Like @DrBB said, it does take a little bit of time. But first thing is you want to make sure your prescriptions are written for the high end of usage. So say I normally use 50 units a day, but if I’m sick I use 60 units a day. I’m going to ask the doctor for the prescription to be at 60 units a day so that I am sure I have enough. You never know how long you will be sick for or if your dose amounts needed decide to go up for periods of time of stress etc. So getting the higher amounts covers you as we have to have it to live! Then you start to stockpile the extra you might have that you don’t end up using.
Plus in any emergency situation of low insulin supplies. Use common sense. Don’t eat something high carb that you need higher doses of insulin for. Like pizza is very high carb, soft drinks, cakes etc. A lot of everyday foods have higher carbs.
Walmart has a cheap insulin that you don’t need a prescription for Humilin R and N faster acting and a slower acting, both called NPH insulin. These are the insulins of old and require a lot closer care. Usually the same carbs at a certain time etc. So make sure if you do need to end up using them you read up on them beforehand. But it is insulin and it will keep you alive. I use an NPH for my dog that has diabetes, but I can control the time I give her the shot and the amount of carbs she gets. All of us have gotten used to the new insulins, so this would be a new different learning experience if you use them.
The stories of the few that have died from the cost of insulin seems to be people deciding they can go without for a few days until they can get their prescription, trying the old insulins but not knowing how to use them properly, or rationing but eating the same foods and letting their sugars keep rising. I’m sure I’ve missed some of the scenarios.
Your doctor might have an input on the best route to take, make an appointment as soon as possible.
In a type 1 your liver makes a certain amount of blood sugars whether you eat or not. So even if you decided to not eat or eat very little, you have to have some insulin or your sugars will go up and be life threatening, in some of us it can happen pretty fast. Hours even. You can not decide you can just do without for the day.
To reiterate what the others have said, ask your doctor to write your 90 day prescriptions for more than you actually need. I currently have five months of insulin in my fridge. It’s a good feeling.
If you don’t live too far from Canada, I would take a run up there and buy a several month supply OTC. It costs about 10% of US retail prices there
You could also try asking your doctor to write your prescription for a three month supply instead of a one month supply. I did that so I could visit the pharmacy less, but it seems like it would help in this situation as well.
I’m off health insurance for the first time in my life right now - I’ll keep my fingers crossed for the both of us! Scary times.
I was going to post a link to Mark’s Marine Pharmacy but when I tried to go onto the site it tells me I don’t have permission to access this resource with the word forbidden in bold letters at the top. Anybody else having this issue?
Hopefully this is the right link @Firenza I don’t use them.
But right at the top of the page it says Americans save up to 85% on prescriptions.
But no forbidden on it that I can see.
PS The old link I had has the Forbidden on it.
Plus, Question, do you have to have a prescription for insulin from them?
Thanks @Marie20 that link works. Yes you do need a valid prescription but they do explain how to send it in and how to have the prescription written if you want to order a bunch at once. You can call and they are easy to work with.
There are resources to help people in need acquire insulin and other supplies at a reduced cost. Check out this JDRF summary.
Most doctors are sympathetic and understand the T1D’s need to maintain a reasonable surplus of insulin. I think, for example, using 30 units a day with an Rx that orders 50 units per day is a common scenario. Insulin needs are not static and can go up. As others have stated above, we just can’t go without it. Much better to be on the safe side.
I agree with having the Doc write out the Rx for more than you need. Stockpiling is possible. But, sometimes supplies aren’t the best supplies. A good stockpile takes time to accumulate. But, if you are ever out of supplies, contact us and we will advise again (advanced warning will help if you see it coming).
Please do whatever you can to keep the BP regulated. That will be the weak link that unravels everything. Know that, in an emergency, you can always get R and NPH from Walmart, over the counter. Its inexpensive and doesn’t require a prescription. Make sure your family knows this. You should have plenty of syringes stockpiled (those are easy). Discuss dosages ahead of time with the Doc.
You can buy insulin direct from Canada online.
Unfortunately as everyone has said, it takes time. But as with everything relating to diabetes, you should always go more than less. So insulin, should always be written for more than you use per day because you never know. Some days I use 18 total units and some days it’s 35. It depends on food, exercise, illness or just dreaded “sugar fairies.” Also need to remember amount needed for priming if using a pump. Prescription pills is a little harder but if you each month refill it 3 days before you can refill, most insurance companies will fill it. So over time, you can build up a small cushion. Infusion sets if prescription is written to change every 2 days and you change every 3 or 4 days, they will start to build up. Test strips work the same way. Write it for more than you might use each day.
The only thing I haven’t figured out how to stockpile is Dexcom G6 sensors. So I just hope it all works out and if I get into a bind, I know I can get them at Costco.
Good luck and isn’t it sad that we have to resort to this?!
I wouldn’t recommend canadianinsulin.com. It took them over a month to fill my prescription and the insulin I have received was already warm. It doesn’t seem spoiled but I don’t like that I have no idea now how fast it will deteriorate.
thanks for sharing. I haven’t used it yet but I like that there are some options out there. If I ever need something like this I’ll have to research reports on the temp of the arriving insulin. I would feel better to have it arrive at least partially cold.
For sensors, I find that if I report sensors as falling off, I get them replaced. And they do fall off, so I’m telling the truth. Now transmitters, that’s a different story because the new ones don’t have as long a shelf life. My current endo orders me TWO transmitters every 90 days though and writes something like “needs a backup in case of premature failure” or something like that and my insurance pays it. I love it. Just my 2c worth of ideas.
And for what its worth, I heard on the Juice Box podcast that the reason we lost the heavily subsidized costco plan was because they thought we would buy the rest of the supplies there but people were only buying the heavily discounted sensors and not the transmitters and they lost too much money. It was an instant rebate that Dexcom provided to Costco members.