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How often do you need to ration your insulin supplies because you’re concerned you could not afford to use it as prescribed?
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I read this question as “Diabetic Supplies” and lacking a pancreas, the cost of Creon which is ~ $600 with insurance and $1400 without for 3 months is awful. My endo says this used to be $5 per month. What happened?
Prior to Medicare I seldom rationed my supplies. Now, I don’t feel confident that my suppliers and I can navigate Medicare requirements without interruptions in service that just are not tolerable. I am finally getting insulin at no cost through Walmart. My pump and CGM supplies as well as test strips have been an issue.
I have rationed my insulin since 2018, except for 2 months this year, when after 2 years of fighting UHC, my endocrinologist team and I got it under $10 for 60 days. 11 days before my next refill, they add Novolog as a Tier 4 drug, making it over $200 for a 30 day supply. Unaffordable on a fixed income. I’m on the Nova nordisc Patient Help, but still ration because I was never informed if it was a one time thing or if I’ll receive more.
Effing OUTRAGEOUS!
Believe me I am well aware how lucky I am to have insurance. As a nurse I have seen what can happen if insulin has to be rationed or skipped.
I have insurance, too. As a nurse I’ve also had patients tell me how and where they get supplies and it not from a pharmacy or DMR supplier. It’s outrageous anyone living in a supposedly 1st world country should have to worry about being able to get insulin.
Never. I live in the UK (United Kingdom of Great Britain and Northern Ireland) where ALL of my prescription costs are met by our NHS (National Health Service), which is funded via direct taxation of all working people.
Thanks, Mick. Please keep reminding us of other non-profit health delivery systems. The Swiss let non-profit health insurance companies compete for subscribers. Why not donate $25 to Medicare for All or Physicians for a National Health Care Program? Why not support politicians signed on to Medicare for All? DEMAND A RESPONSE FROM YOUR SENATORS AND REPRESENTATIVE on Medicare For All. Call them and email them, even better lobby them in person.
Dear Wanacure,
I’d gladly demand a response from Senators and/or Representatives, but I’m afraid they’re highly unlikely to ‘listen’ to someone that comes from a country where we have a National Health System that doesn’t charge diabetics … and some other medical conditions … anything for their prescription requirements.
I have in the past, but i am in a position to pay the premium for insurance that ensures I won’t need to do that as long as I have access.
Never. I live in France, where T1D is an “ALD” (affection de longue durée, a long-term illness). People with ALD’s pay nothing for the medicine that keeps them alive. (OK, I pay 1 euro every time I fill my prescriptions at the drugstore. That’s per drugstore visit, not per prescription.) The French health system is paid for by contributions from everyone who works and their employers. It’s not cheap, but no diabetic in France has to worry about paying for insulin prescribed by their doctor. FWIW, the unemployed and homeless don’t contribute, but receive the same benefits.
N’est pas.
It makes a lot of sense to me.
Supply chain issue are the problem, not cost, although if we had universal health care this stuff would be priced more reasonably
Never, but there but the grace of God, go I….
I ration my pump supplies. I use my infusion sets for 3 days rather than two but, because of this, my scar tissue is building up and who knows how long until I won’t have anywhere to insert them.
I also take a week off from CGM to stretch them out.
Fun time to be a T1 diabetic in the U.S.A.
Only time I rationed was because of delivery hold ups.
It’s happened a few times in the past. But that was several years ago.
I am fortunate to have good health insurance. I pay $150 for a 3-month supply, 7 bottles for me, which works out to about $21/bottle.
I said never. But I have been unexpectedly confronted with costs of around $800 for my 3 month supply of 1 of my insulins. I put it on my credit card, and complained about it to anybody who would listen. Costs have come down, bit by bit, since that peak. If this had happened to me when I was younger, it would have been a huge problem. As it is, I am old and frugal.
I do occasionally worry about using up my insulin before the insurance company feels it is a suitable time for a refill.
I was diagnosed a Type 1 in 1976 and transitioned from MDI to my first insulin pump in 2011. Prior to going on Medicare (about 7 years ago), I had no issues with getting the supplies I needed to manage my diabetes. Unfortunately, that has not been my experience with Medicare. I did not begin using a CGM until 2019 and was testing my BG 8X.day to make adjustments. It took me about 18 months of appeals of Medicare denials to obtain the number of test strips I needed to stay in control. In June of 2021, I noticed that on Day 3 of many (not all) of my infusion sites, my BG would go much higher despite eating fewer or no carbs. I concluded that my body wasn’t absorbing the insulin as well and an early site change was needed. Medicare ONLY provides 30 infusion sets and reservoirs/cartridges every 3 months, so, if I changed early, I would run out unless I was able to obtain Medicare approval for earlier site changes. I provided my endo with my documentation supporting this need yet, Medicare would not accept his case notes in support of increasing my pump supplies. After several failed attempts, I concluded I needed to change Endo and did so in January. Yet, the new endo hasn’t been able to write case notes that Medicare will accept, so, I am forced to continue using a site that doesn’t work well unless I pay for the extra infusion sets myself. (I was an analyst in my former career and had provided charts showing the deterioration of my BG readings on Day 3 despite lower carb intake and higher insulin usage than on Days 1 and 2. Not sure what else I could do.) What I have done in order to attempt to maintain control is create an additional Personal Profile on my Tandem X2 w/Control IQ. I call it “Day 3”. (And perhaps that is the problem….I do manage to control my diabetes despite these hurdles placed in my path.) The Total Daily Basal delivery on my Day 3 Profile is nearly double (+90.1%) the TDB on my regular “Louise” profile used on Days 1 and 2. It should NOT be this difficult to obtain the supplies we need!
Preaching to choir, here. It’s ridiculous what one must do to get what they need, when on a Medicare Advantage plan.
I said never, cause it’s not rationing per se, but I recently had to resort to using expired insulin from my backup supplies for my pump because I couldn’t get Medicare to supply it under Part B (DME) as they’re supposed to do when it’s for use in a pump. Ended up having to pay a pretty high deductible and get it under my pharm coverage because they still haven’t straightened this out.
Ive not been faced with rationing as of yet but now on Aetna Medicare the cost of both my insulins have drastically gone up in the 2nd quarter with having to meet this astronomical deductible before the cost goes back down. I managed to stockpile several boxes while my husband was still working. But, now that he’s retired, were both fighting the high cost since he’s type 2 needing his own meds.
The only time I have ever thought of doing this was when I was without insurance. I didn’t, but the thought did occur to me. I’m just not sure how/why someone would do this!
I marked all the time. In the middle of switching from private insurance to Medicare. Nuf said.
NEVER !!! Why when I started 70 years ago, my insulin cost per month was less than an hour of my wages.. My syringe was glass that I boiled every morning along with the needle that I sharpened on the striker paper of a matchbook!!!! Lets see what is really going to happen when Joes law takes over..I have not really looked at the details… $35 per month for insulin… what about the cost and problems of pump, Cgm, etc that so many are using???