Hi everyone my name is Allie Ulset and I’m currently a college student at the University of Wisconsin- Lacrosse. For my public speaking class I’m doing a persuasive speech on why the government should create a law forbidding excessive profit of lifesaving drugs like insulin and I need community interviews. So, I was hoping I could get a response to a couple of my questions on here. I’m interested in this topic because my mom has been a type 1 diabetic for the last 42 years and I’ve seen first hand how much money, time and effort goes into her life everyday. I also think its super important to educate the general public on diabetes. So, here are some of my questions
How long have you had type 1 diabetes
Have you ever been admitted to the hospital for diabetes if so how long
If your willing, approximately how much do you think you’ve spent on insulin and also on other things you might need while being a diabetic
Have you ever had to ration your insulin
Have you ever had to go without something you need in order to pay for insulin
How do you feel about the price of insulin
Do you wish the government would set regulations or cap prices for insulin
Feel free to add anything else you feel is important to the topic
Also, feel free to answer as many or little questions you wish. I appreciate your time and would love to answer any questions you have or just talk!
-Allie Ulset
Hi Allie and welcome. Your questions are very important to the Diabetic community and are ones we ask all of the time. I was diagnosed in 1963 at 14 months old. Things have evolved throughout my 58 years of having T1D. I can remember when a vial of insulin cost $6.00 years ago and back in the day my father who also was T1D and I used glass syringes with disposable needle hubs, U40 then U80 insulin’s, clinitest and test tape urine checking methods and had glucagon always on stand by. Today the cost of treating Diabetes has reached a new level for all of the items you need to have. I was required to stay in the hospital when I was very young for various reasons due to being a T1D during my childhood some times for a week to several weeks.If I had to give an amount that I have spent throughout my life for supplies, I’m afraid I’d have to say I have no idea, but today the costs of buying insulin at Walmart and saving for CGM transmitter and sensor copay’s are biting into our budget. Going with out creature comforts are all too common when you know money will be required to pay for things just to live. People on insulin pumps and CGM’s that help them maintain a Diabetic life the best that they can is really expensive and without insurance or insurance willing to pay all of the costs makes it very difficult to live a healthy life. The main problem is our government representatives are being controlled by big pharma. There are lobbyists paid to influence reps to make it to where medications are high to make big pharma huge profits while people suffer. There were executive orders scheduled to go into affect to lower insulin and epi pens costs but were over rode by new executive orders put into affect by the present administration favoring big pharma. Remember it is more profitable to treat a disease that it is to cure it. I hope this helps you.
@ulset9273 Welcome Allie, to the JDRF TypeOneNation Forum! Here you will find some very informed people who have lived for many years who hopefully will share their experience and thoughts for your survey and presentation. Is you mother a registered Member of this Forum? I’m wondering if we have “net”. I’ll try to provide “brief” responses to all your questions, but please feel free to message me if you think I may be able to assist you in your research.
I like your idea about educating the general public but, in my opinion, it may be more important to first try to educate doctors, including some so-called Board Certified Endocrinologists.
How long have you had type 1 diabetes? 64 Years
Have you ever been admitted to the hospital for diabetes if so how long - Yes, when diagnosed on my 16th birthday, I spent two weeks in the hospital getting my BS below 1,500 and clearing acidosis poisoning. At that time, a blood sugar test took 2 days. Since then, I have stayed in the Joslin Clinic Teaching unit for a couple of one-week education/training sessions.
If your willing, approximately how much do you think you’ve spent on insulin and also on other things you might need while being a diabetic - Many, many thousands of dollars. that I can’t even guess. When I was first on my own at age 18, a blood sugar test cost a day’s wage, my first home blood-check strips [1966] cost $1.25 each and minimum wage was $1.00 / hour. NPH Insulin $1077 per vial. Retail price of my current iAIDs is about $10,000. What I’m saying, a Dollar amount of expenditure is meaningless for the survey without adjustment for value change over time.
Have you ever had to ration your insulin - I have had to make sure that I drew every drop out of a vial, and I’m still sensitive about dumping insulin. Although I’ve “stretched” what insulin I’ve had by eating less, the rationing I’ve experienced was when disposable U-100 syringes came along, I’ve had to use the same needle and syringe for weeks.
Have you ever had to go without something you need in order to pay for insulin - yes
How do you feel about the price of insulin - Some types of insulin are very expensive, especially the analogs. However, each person with diabetes has the option to choose the types of insulin; the rDNA insulin formulations are relatively inexpensive yet are wonderfully efficient for managing diabetes well - only drawback is they do not work as fast as the analog.
Do you wish the government would set regulations or cap prices for insulin - Yes and No. It is unamerican to regulate legally operating businesses. That said, I do not object to the government ENCOURAGING insulin manufacturing to lower cost; just like the Secretary of Health influenced Lilly in 2019 to cut the price of Humalog from $375 to $168 per vial. Also, I endorse the action the government took to place a $30 per month out-of-pocket for Medicare Beneficiaries that went into effect on January 01, 2021.
Feel free to add anything else you feel is important to the topic
Also, feel free to answer as many or little questions you wish. I appreciate your time and would love to answer any questions you have or just talk!
How long have you had type 1 diabetes? Diagnosed in 1963
Have you ever been admitted to the hospital for diabetes if so how long. Yes - at diagnosis; ER visit in college due to low glucose ( this was in the 80s before even BG meters much less CGMS. I was carrying something glass, fell and cut my hand. Was back at school a few hours later; one ER visit due to a low after college (again, no devices). Was sent home a few hours later. In early 2019 I had what I call a “Pre-KA.” It’s not a medical term but I was close to an actual DKA but didn’t quite meet the mark; was also put in the hospital when I got my first pump. I don’t know if that’s still done but we went in so our initial basal rates could be established and we would be right there if anything happened. I think we (I and another patient with the same doctor) were there two nights
If your willing, approximately how much do you think you’ve spent on insulin and also on other things you might need while being a diabetic.
Not a clue. My parents took care of my meds through college - others diagnosed about the same time may have some prices. I graduated college in the 80s and have always had insurance coverage - copays have varied and I really can’t begin to estimate the cost.
Have you ever had to ration your insulin. No, but I’ve had some close calls: there were times when my my supply was fine for the occasional extreme - but if the extreme was extended I wasn’t going to have enough. Thankfully either my doctor spotted me a bottle or the pharmacy was able to get an insurance override so I could fill early (really, would a day or two kill them? Me yes, insurance, no).
Have you ever had to go without something you need in order to pay for insulin. No.
How do you feel about the price of insulin. Way too high! When I hear ads for other drugs that say “If you can’t afford to pay for your [drug name] call this number…” I see no reason why we can’t have something similar.
Do you wish the government would set regulations or cap prices for insulin. Yes. Even better, I would like to see big pharma do the right thing and stop yielding to greed. In fact, a pharmacy company that made insulin affordable could get such a consumer base they would have a monopoly over the others.
How long have you had type 1 diabetes Diagnosed in 1990. So coming up on 31 years.
Have you ever been admitted to the hospital for diabetes if so how long Not since I was diagnosed.
If you’re willing, approximately how much do you think you’ve spent on insulin and also on other things you might need while being a diabetic I don’t think I can add that up. It’s been decades. I’ve been lucky enough to always have insurance, but coverage has varied. NJ mandates that all diabetic supplies be treated as prescription items for insurance benefit purposes. Usually, insulin and other medications would get me past the deductible early, and then the price would be partially covered by insurance. I was still paying $20k/year, all told, between insurance premiums, prescription costs, and testing. But I’m not sure how much of that was insulin. When the ACA (“Obamacare”) passed, insurance changed. Instead of having a lifetime cap on how much insurance would spend on me, I had an annual cap on how much I had to spend out of pocket. That change cut my annual medical costs in half while ensuring that I wouldn’t be kicked off insurance down the line just because it was too expensive for them to pay to keep me alive. (Fixed the your/you’re typo.)
Have you ever had to ration your insulin No. I’m lucky. I can afford it. But a friend does. I sent her my extra when I switched types. She couldn’t afford it, so she was stretching it by taking “just enough that I’m only throwing up a couple of times a day.” (Reminded me of the 19th century cosmetic directions for taking arsenic to get that milky white porcelain skin that was the style at the time.) I mentioned it on social media and found a flood of people were doing it. I looked into it more and found news articles saying that at least 1/5 diabetics in the country had admitted to rationing to some degree. Boggles my mind that we’re allowing people to die of a treatable condition in a society that can afford to pay for it, particularly when the drug companies are just allowed to charge so much more for exactly the same insulin they were making 20 years ago.
Have you ever had to go without something you need in order to pay for insulin Thankfully not.
How do you feel about the price of insulin I’m lucky. But there’s no excuse for how high it’s gotten for people without insurance.
Do you wish the government would set regulations or cap prices for insulin Yes, and I’m glad that some people in Congress are at least talking about it and trying to highlight it.
1) How long have you had type 1 diabetes?
Since the fall of 1976 so just under 45 years.
2) Have you ever been admitted to the hospital for diabetes if so how long?
When first diagnosed I was put in the hospital till they got me under some sort of control. (I was 11 at the time so it felt like an eternity) Also there have been about 3 or 4 instances where I have been in the hospital from a few hours to overnight due to hypoglycemia.
3) If you’re willing, approximately how much do you think you’ve spent on insulin and also on other things you might need while being a diabetic. I wouldn’t have a clue. The first dozen years or so were on my parents’ coverage, the rest of the time I have had decent insurance coverage.
4) Have you ever had to ration your insulin? At one point I was unemployed for 6 months, but I had enough notice that I was able to fill the prescriptions enough to last me through. After going back and forth with insurance and the doctors, I have found that the best way to get enough lies in how they write the prescription. Never write the number of daily units on the prescription (insurance companies will short you. If you take 50 units a day a bottle will last 20 days and the insurance will charge you a month’s copay for 1 vial. If you have them write it as 2 vials equals 1 month’s supply the insurance generally will not balk. In fact an insurance rep told me to do it this way. For the most part we vary our doses so it is hard to give the insurance a number for the daily units. I have had to ration test strips, cholesterol and blood pressure pills though.
5) Have you ever had to go without something you need in order to pay for insulin? No
6) How do you feel about the price of insulin? Without prescription coverage, it is high.
7) Do you wish the government would set regulations or cap prices for insulin? I honestly don’t know. There has to be reasonable profit for the company otherwise why should they make it. On the flip side it is something that is necessary for us to live. Nobody should have to do without, or have to go bankrupt to pay for it!
8) Feel free to add anything else you feel is important to the topic. Other diabetes supplies should be included in this dialogue. Insulin in a vial doesn’t help much. Syringes pumps or other means to get it into our bodies, as well as test strips and or sensors should be included as well, just to name a few
Have you ever been admitted to the hospital for diabetes if so how long- yes when first diagnosed since I was in dis, 5 days
If your willing, approximately how much do you think you’ve spent on insulin and also on other things you might need while being a diabetic? No idea for a large part of it since my parents paid for everything through college, but for the last 5 years a lot. Right now my current insurance I pay $2,700 for my first 90 day supply(then I hit where my plan will pay), then 1200 for 1 -2 more 90 day supply, $1600 for two 90 day supplies of test strips, and then my first doctor visit with labs is about $800, and about 600 for 90 day supply of omnipod. (thankfully, I hit my max OOP around may and then everything is free). My insurance is pretty blah.
Have you ever had to ration your insulin? Thankfully no
Have you ever had to go without something you need in order to pay for insulin? Thankfully no
How do you feel about the price of insulin- I think it’s completely out of control. As I’m sure we all feel, this is something completely out of our control and need it or we die. I’m not against paying for it at all, but I do think it should be a prescription that is reasonably capped. Paying like I do (and others I’m sure) is absolutely ridiculous.
Do you wish the government would set regulations or cap prices for insulin. Yes
Feel free to add anything else you feel is important to the topic- insulin is relatively cheap and drug manufactures are charging us a lot more than it costs to produce
One vial of Humalog (insulin lispro), which used to cost $21 in 1999, costs $332 in 2019, reflecting a price increase of more than 1000%. In contrast, insulin prices in other developed countries, including neighboring Canada, have stayed the same.
It’s the same insulin, manufactured in the same way and in the same facility, and the price hasn’t changed elsewhere. The company isn’t raising the price because they need to. They’re not raising the price to cover R&D. They’re raising the price because they can.
But, yes. It’s not just insulin. Diabetics need a lot more than that. But it’s also medications for other conditions. You may remember Martin Shkreli, who bought the patent on a drug used to treat AIDS and then jacked up the price without changing anything else, just because he could. It’s not uncommon at all.
Part of the problem is that drug companies, at the height of their power many years ago, lobbied Congress to make it illegal for Medicare (the single largest insurer in the country) to negotiate drug prices. Private insurance companies do that as a regular part of their business. The national insurers in other countries do that. It’s just a standard thing, not just in pharmaceuticals. Any time you get a large company making bulk purchases, they’ll work to negotiate a better rate. But Medicare and Medicaid can’t. And we don’t have laws regulating prices for the general population. So if you don’t have insurance you’re stuck paying whatever the company feels like charging, knowing your life depends on it and you don’t really have an alternative until the patent runs out and a generic version becomes available.
There are things we can do. We could expand Medicare and/or Medicaid to make sure everyone is insured. We could untie their hands so they can negotiate with the drug companies, which would likely help bring down the cost for everyone. We could set market caps to make sure it remains affordable while allowing for a profit margin. Perhaps there are other solutions.
But the bottom line is that we’re objectively being overcharged and people are dying because of it.
1. How long have you had type 1 diabetes
27 years (It’ll be 28 years this August) 2. Have you ever been admitted to the hospital for diabetes if so how long
Never. We did have to call 911 once because I had a seizure due to a low blood sugar. 3. If you’re willing, approximately how much do you think you’ve spent on insulin and also on other things you might need while being a diabetic
Over my lifetime, no idea. When I signed up for health insurance for the first time (when I turned 26) I very nearly hit my $1500 deductible filling my 3-month prescriptions (7 out of 8 were diabetes related). Then, 3 months later, a new fiscal year had started and I had to pay $1500 again. I also tended to hit my out of pocket maximum of $3000 but not early enough in the year to benefit from everything being free afterwards. I posted about it on Facebook a while back, so I have some of the actual numbers saved. In 2012 six out of eight mail order prescriptions cost $1456.09. Of that $337.43 was for 3 bottles of Lantus and $677.40 was for 5 bottles of Humalog. In 2014 eight out of eight prescriptions cost $1680. Of that $884.90 was just for test strips, which amounted to 2 weeks’ wages (after taxes and stuff). (I was making $13.50/hr as a lab animal technician in 2012 and about $14.70/hr as a veterinary technician in 2014.) 4. Have you ever had to ration your insulin
I haven’t had to ration, but I don’t throw out every bottle after 28 days. I keep using them until they’re empty. 1 bottle of Lantus lasts about 2 months if I ignore the expiration date. 5. Have you ever had to go without something you need in order to pay for insulin
No 6. How do you feel about the price of insulin
It’s shamefully high 7. Do you wish the government would set regulations or cap prices for insulin
Yes, but not just for insulin. Our inalienable rights are life, liberty, and the pursuit of happiness. Healthcare and life-saving medicine should be a right, not a privilege. 8. Feel free to add anything else you feel is important to the topic
I know a lemur whose insulin costs $120/month.
Thousands of dollars but can’t pin down #. My parents probably struggled more with expenses than I did as adult. As adult I was fortunate to have good group health insurance & 2 income family (wife who was RN).
Never had to ration. If pump infusion set fails I do draw as much insulin as possible from cartridge being discarded due to Medicare rules on refill dates.
No
More affordable since generic Humalin became available. Generic is Humalin but has generic name & packaging. Of course not in pharmaceutical Co. best financial interests to promote generics.
7.Yes
We are a society that historically & in principle has an interest in wholeness for everyone. Private & government support must be raised in order that insulin is affordable for everyone.