FYI and my questions - NPR coverage of T1 diabetic who couldn't afford his insulin


#1

Is this a problem for many of you? This is a heart-breaking story, and one I don’t think should be happening in the era of “Affordable Care Act” (ACA/Obama care)!

However, I know that not all (health insurance) policies are reasonably priced, and that not all states expanded Medicaid coverage to all eligible in their state. Thus this sad story.

Where can I best read about what the diabetes community is doing to address the issue of lack of affordability of insulin even with health insurance? [We may be moving to another state due to (housing) affordability issues, and sure don’t want to be stuck with an unexpected insulin affordability problem!]


(Janice) #2

Angela, Yes it is a problem, and you can thank Mr. Azar President of Eli Lily and the other two Sanofi and Nova Nordisk for that… I know Nova Nordisk can supply Insulin if you are on a limited income. Don’t know if Eli Lily (maker of Humalog) and Nova Nordisk ( novolog ) need to check out their web or possibly call them direct. A friend of mine is getting his from Nova Nordisk.at a greatly reduced prices. Sometimes your doctor gets samples and my doctor gives me what she has since prices are so high… Mr. Trump was supposed to fix this problem but he hasn’t yet. Send him an e-mail and ask. I did on another concern, plus my congressman. I know this isn’t much help, but I’ll keep looking. Keep me posted,. Bye jan


(Sandra) #3

My 24 year old son is on my insurance and I pay all his supplies and insulin no way he could afford it. It’s a sad place to live when your healthcare is life or death


(Janice) #4

Angela, sorry I forgot to tell you,. You can go to Walmart and purchase u-100 regular and u-100 N for $24.88 a bottle. If you are unfamiliar with this type, it is what we used to use before the new stuff came out. u-100 regular is interchangeable with Humalog or Novolog for meal time, u-100 N is long acting for a baseline- My endo switched as many of her patients as needed because they couldn’t afford the expensive stuff, u-100 regular takes a little longer to work, lasts approx. 6 hours u-100 N reaches it’s peak in about 6 hours, lasts approx. 12 hours. I used this for years before the other stuff came out… Hope this helps, sorry I didn’t tell you sooner. Bye jan


(Nancy) #5

I was deeply saddened by this story on Morning Edition last week. I found myself needing an insulin Rx refill this year before my deductible was met. Frickin’ $185/bottle for Humalog. The last time I paid for it out of pocket it was $75. So sad, so so sad, that we’re just a bottle away from DKA. Smdh.


(RichardV) #6

I used NPH and R insulins for many years, prior to fast acting insulin being introduced in the 1990s. I got along very well with those old insulins. They are still used a lot all over the world. Walmart sells NPH and R insulins at less than $30 per vial. In some states a prescription is not required for NPH and R.
R is a somewhat fast acting insulin, and NPH is more like a basal insulin. They must be used differently from the synthetic insulins we use today. Specific instructions would be needed.
Using these insulins can save people’s lives, if they cannot afford the expensive ones so many of are using today.


(Cheryl) #7

I also have type 1 diabetes, and I’ve had it since I was 14 years old. I’m 73 now. I am on a Minimed Insulin pump.
With Medicare, insulin will be paid for on Medicare part B if you’re on a pump. I am appalled at the high cost of insulin, and if I wasn’t on a pump, my Medicare part D would hit the donut hole by May. I know, because that’s what happened to me before I got on the pump. I had to order my insulin from Canada, because I could get it cheaper. For those who are not on the pump, you might try either Canada or Mexico, because it is terribly high in the U.S., which is ridiculous!!


(joe) #8

Hello, Just like @richardv and @JaniceD, I used R and N for many years as well and survived. I must add that both R and N have been reformulated and both are now “Human Insulin” made from recombinant DNA, and not the beef/pork versions in years past which are not even available in the US anymore. These are lower cost and can be an alternative to higher priced insulin.


(ntrubov) #9

OK, I’ve been injecting insulin for fifty five years already. When I started I used regular and NPH insulin. Those are still available for only twenty five dollars a vial which is basically the same price that I was paying (in 1963 dollars) back then. Sure, there are lots of “brand new” SPECIAL insulin preparations but the old ones still actually work. Death from not being able to afford THOSE new expensive ones is basically caused by ignorance or just plain stupidity. And regular insulin can still be obtained without a prescription (except in Indiana) so try to live in another state if that is what you need to do.


(bsteingard) #10

Last month Eli Lilly launched the Lilly Diabetes Solution Center to help with insulin affordability. The center can be reached at 833-808-1234, Monday-Friday 9 am - 8 pm ET.


(bsteingard) #11

The type 1 community’s doing a lot to fight for better insurance coverage and reduced costs. Here are a couple of resources:
https://www.jdrf.org/get-involved/jdrf-advocacy/coverage2control/
https://makeinsulinaffordable.org


(Janice) #12

It’s about time. Most insurance companies are not covering Lily products, this might change their minds, maybe that’s the reason they came up with a Solution Center. Thanks for the info, greatly appreciated. Have a great day. Bye Jan


#13

Hi ntrubov, it seems like you’re saying that because this young man did not know as much as you do about our disease (with 55 years of experience), he is ignorant or just plain stupid? :flushed: Is that what you meant to say? I think probably not…He was only 26, and Humalog has been the accepted standard of care since the 1990s. He probably never used Regular. And even if mentally he was kinda…slow (I have known plenty of 26-year-old men who lack common sense; and the article did say he didn’t know what a deductible was), does that mean that he deserved to die?! I don’t think so.

I think that each person’s medication regimen should be determined by him or her and his or her doctor. Humalog cost $80.00 per vial when I was diagnosed in 2000. Now the same exact medication costs $860.00 per vial over the counter. There are resources that are available (e.g. GoodRx, Lily Cares, samples from doctors), but all of those take additional knowledge and work to acquire. There are plenty of people who might not be mentally able to navigate how to access these programs. It would be wrong to say that because these people can’t figure out how to get their medication cheaper that they deserve to die. Don’t you think there should be laws limiting how much a company can charge for medications? This young man was a taxpayer, do you think he deserves to have affordable access to the medication his doctor prescribed, not a worse-functioning alternative that hasn’t been the recommended standard of care for 20+ years? I mean, I know we are a capitalist society…but no capitalist society can function without limitations, can it? :syringe::money_with_wings::classical_building:

I know Regular insulin works well, and the doses are basically equivalent to Humalog, but it takes longer to take effect and lasts longer. That could be tough adjustment to make without having to deal with highs and lows while you get used to it. Lantus and Humalin N are totally different though, without a doctor’s guidance I wouldn’t recommend anyone switching from one to the other. I’ve never used it, but with a pump I can’t imagine that Regular works as well, especially with the CGM with auto mode… Still, in a life or death situation it is a good option, for now, with our current healthcare system… I wish that this young man had known about these options before it was too late. :pensive:


(ntrubov) #14

Stupid or ignorant, of course he did not deserve to die. I think he was probably neither stupid OR ignorant. Unlucky, yes. But when I heard that news report on NPR I was sort of stunned. Insulin prices HAVE increased criminally and I’ve taken the opportunity of writing to my congressmen AND senators to complain about that.

I’ve often wondered if it were to come to that if I would be able to produce my own insulin by harvesting pork, cattle or sheep pancreases. I’m afraid I’d be dead before that ever happened, though.

So in a way I’m stuck also. But I’m also very glad (AND lucky) to still be alive.


(Susan) #15

I became very sad when I read this NPR article. NO ONE should be dying from lack of money to access the health care system and, like ntrubov, I have repeatedly written my senators and representative to complain about this issue. However, I live in Texas and am not confident that my senators (one of whom is the majority whip for the GOP) represent my interests regarding healthcare. I am extremely lucky to have excellent health care coverage at this moment and have been able to obtain a pump and a CGM, but I’ve heard rumblings that “pre-existing conditions” may not be covered if this administration is successful in repealing the ACA which, in my opinion, would be a monumental disaster for a good portion of Americans. Since I’m self-employed, I am currently living in fear about increases which would make insurance unavailable for me.

I found myself without insurance for over 18 months in 2015-2017; fortunately, in my small town there was a free health care clinic which supplied free insulin and supplies. The issue is that so many Americans are in that “black hole” which occurs when people make too much money for insurance subsidies but not enough to be able to pay the large deductibles and co-pays.

This is not the place to get on my political soapbox but if we don’t speak up, nothing will change. Thanks, bsteingard, for posting those links; I will definitely check them out.


(jjmnav) #16

I used Humulin R & N for 30 years before Endo convinced me to switch and ended up on Lantus & Apidra. Now without insurance, I still have to revert back to Humulin whenever Sonofi’s Patient Assistance makes it a long drawn out process before they ship to doctor’s office.
BTW - Walmart’s price of under $25 per vial might be for Humulin or Novolin, depending on which their current contract is for. So ask for the affordable brand. For me they both have the same effects.

Is this much profit MORAL??? Per GoodRX a vial of Humulin R or N costs $176 to $188 or with coupon $99.39 (vs Walmart cost of $24.88). Likewise Novolin R or N costs $143 to $174 or with coupon $24.01 to $26.09.

Humulin costs increased by a factor of 3 over a 7 year period!!! “Price Tag on Old Insulin Skyrockets” written in 2014 at MedPage Today notes: “Both U-500 and U-100 now cost about $0.12 for each unit of insulin (analogs are pricier, at about $0.27 per unit).
But prices of U-500 and regular human insulin weren’t always equal. In 2007, regular Humulin cost $0.04 per unit of insulin – twice that of the $0.02 price tag on each unit of insulin in U-500.”


(Janice) #17

Hi JJ, used R and N before they were Human, back with they were Beef and Pork, back in the dark ages. Check out Type 1 Diabetes Defense Foundation, they are working on the Pricing Problem, Also sign up with Atty Hagens Berman, they filed a class action suit against the insulin Mfg. for the outlandish price increase. I remember when Humalog was

$21 a bottle. After 64 years of using insulin I have seen some wild changes. Have a great day. Bye Jan