Hi my name Eve, I’m a type one diabetic from the UK and was wondering if you could help me with my research for one of my A levels. I am researching about the prices of insulin in the US and the impact this has on people compared to the healthcare system in the UK. It would be great if you could answer the following questions:
Has the price of insulin affected your management of diabetes?
Have you ever had to ration your insulin?
Do you think insulin should be available free of charge?
Thank you for your time
Hi Eve @evefdp from UK. welcome to Type One Nation. ok. Ill try:
no, the price of insulin has not affected my management.
I have never had to ration insulin in 42 years, starting with ground up beef and pork pancreases - and ending up with human recombinant DNA insulin.
I actually work in pharmaceuticals… and so I know just how hard it is to make a sterile liquid injectable hormone replacement. I cannot fathom how it would be free, so someone or everyone would have to pay for it. From my perspective, it would be great if I could get it “for free” but knowing just how it’s made, I am not convinced that my personal benefit would not impact others. And also, if it were somehow controlled, how it would impact further development… don’t forget I injected animal based insulin, and it took an incredible amount of technological investment to go from pig pancreases to human DNA insulin, and even if that pig/cow version was available and free, I am not sure I’d inject it anymore. Good luck. What is your major?
@evefdpHi Eve and Welcome to the JDRF TypeOneNation Forum!
Happy to provide some data for your survey:
The price of insulin has not affected my diabetes management. I am always cautious about wasting insulin, although I take sufficient insulin to maintain level BGL;
While living with diabetes for 65 years, I thankfully have not needed to ration insulin. The cost per vial has increased from @1.77 for pig insulin to $375.99 for the new analog insulins that arrived in 1966;
Nothing is free, not even water, if I could be given a vial of onsulin without needing to shell out some $$$, I would actually be paying for that insulin through increased taxes. For example, when “Affordable Healthcare” came came into existence so that everyone could “readily afford” the cost to buy aa health insurance policy, the cost of my health insurance, and my co-payment for services increased about 20%. Why??? because I worked productively for 50+ years and provided for myself.
The cost is what it is. As unfair as it is. I live close to the Canadian border and would cross the border and go to the Canadian Costco for insulin. It’s over the counter there. No prescription needed, nice. The last time I got some it was $25 for a vial of Humalog. That was when covid hit. I’m now on Medicare and doing ok.
Hi @evefdp . I’ve had diabetes for nearly 60 years. Since I’ve been a working adult I’ve always had good insurance. My prescriptions - diabetes or otherwise - were never free; but the co-pays were manageable. I’ve never had to ration my insulin due to cost, as my doctor writes my prescription to cover what I need. That said, there was a time a few years ago when I had been running high for several days. I needed more insin than normal to fix that situation, and I had to increase my basal rates as well. That’s the short and simple version. Things settled back into place but it looked like I was going to run out a couple of days before my refill was due.
I had gotten an override once before so I could get it early and was told it was allowed once a year(?) so I didn’t think I would get another one at that point. I think my doctor had to give me a new prescription so I could get my needed meds early! Insurances are sticklers when it comes to time for refills, which can be dangerous. It’s not like we’re seeing narcotic painkillers.
As for insulin being free: for people who are on Medicaid, for whom even standard co-pays would be a hardship - that I understand. But there are costs in researching and producing and those have to be covered somehow. And “free” often means diminished quality; so despite all the regulation that goes into the production, if all insulin were free, in the back of my mind I would always wonder if I was getting a quality product.
Hello! Here is my input. I’m from the US if that matters
Has the price of insulin affected your management of diabetes? Luckily no. I have horrible health insurance but a good paying job so I’ve been able to support myself and not have to change my management. Before I was on my own, I was on my parents insurance and I’ve always had access to my insulin.
Have you ever had to ration your insulin? Thankfully no!
Do you think insulin should be available free of charge? I’m not sure if it should be totally free, but I do think it should be fairly cheap with competitive options. Also when I say competitive I do think that all the insulin should work the same. I’ve only been on my own insurance for a few years (I’ll be 29 in the spring, and in the US you can stay on your parents health insurance until your 26). What I can say, is I make a really good living for someone in their late 20s. What frustrates me, is I know that insulin is relatively cheap to make and sold for a huge profit here. Every time I go to the pharmacy for any diabetes supplies(test strips, insulin, dex) the pharmacist or the technician always have to side counsel me because the cost of our supplies to keep us alive is so expensive. Like I said I know I’m very fortunate that I can politely tell them to charge it, knowing I hit my out of pocket by may, but it’s really sad and hard to think about others who are not in the same boat. I can totally understand how someone wouldn’t be able to have a true life in the US at my age with the cost of diabetes supplies, rent, student loans, food/utilities and just everything it takes to be independent in the world. And that’s heartbreaking. So round about answer to your question do I think insulin should be free, no. But I do think that it should be sold at a competitive rate that doesn’t make diabetes care a huge financial burden. there is absolutely no reason it should cost anyone $2000 (what I pay for my first 90 days of the year) for an illness they can’t control without it.
I am a new T1D (less than 1 year) so I can’t really give you anything meaningful for your study. I wanted to add that in the US there was a new bill introduced into place in 2019-2020 called: H.R.5749 Affordable Insulin for All Act. Two of my insulins (Novolog and Basaglar) have a limit of $25 per month for insulin. The websites give you a ‘code’ that you show to your pharmacist to get the reduced fee if your insurance charges more. I will say, I was surprised by how expense test strips are and the non-insurance price for CGMs - mandatory for monitoring our condition.
Hello, my child just diagnosed with T1D after a series of misdiagnoses in months. I am trying to learn this new life. It is not easy; it is indeed very hard. We have private insurance, and the co-pay of the diabetes care are not small. It is first time that I know this H.R. 5749 Affordable Insulin for All Act. MFBarry, thank you for sharing this information here. Can you share where to find the 'code" that I can show to the pharmacist? Thank you!
Hi! I haven’t used the codes myself because my current insurance covers it for about $25. This is the link for Basaglar: https://www.basaglar.com and this is the link for Novolog: https://www.novocare.com - both on the front page about getting codes for affordable insulin. These are the 2 codes that I have (if I need them) for the 2 insulins that I use. If you use something different, I suggest going to the company’s website.
Hopefully these will help for you!
Take care and remember, this will get better. I have been a T1D for less than a year and it is amazing the things I’ve learned as well as the mistakes I’ve made. This community is great and the info shared by some of the long time T1D have made a big difference. I also suggest getting “Think Like a Pancreas” by Gary Scheiner as it has become my diabetes bible.
Thank you, MFBarry, for the information sharing with us. These are very helpful. I wish you the best and hope you are continuing doing great! I love reading these long time T1D folks’ posts and they are inspiring. Have a wonderful weekend! For lows and highs, for ups and downs, please feel free to share with us. We are together!