I have lived with type 1 diabetes since the age of 5. Even with insurance, a 30-day supply of my insulin runs me $1,000. It’s a cost I simply can’t cover on my own. Managing my diabetes on my own while I was in college was such a challenge. I began to eat less to make my insulin last longer, and my sister and I began to share insulin in order to cut costs. But last May, my sister rationed a dose and went into diabetic ketoacidosis. She almost went into a diabetic coma and had to be hospitalized for four days. Things turned bad so fast. To see my sister fighting for her life made me feel like it was all my fault. To know people at Eli Lilly who control prices were headquartered less than 20 minutes away from us, as we sat by her hospital bed, enraged me. I almost lost my baby sister.
I have an incurable blood cancer called multiple myeloma. Myeloma patients on Medicare are paying as much as $3,000 out-of-pocket per month for Revlimid and other drugs. There are grants available for some, but not all qualify. I don’t know if I will qualify or if the grant money will be there when I need it. What I do know is that I won’t be able to afford this monthly cost without selling my home and using every penny I’ve managed to save –– and even that will only last so long.
I was diagnosed with fibromyalgia years ago, and I also live with neuropathic pain. When I found out it would cost me $550 out of pocket each month to get the Lyrica I was prescribed, even with the discount card, I was stunned. I could only afford to take a third of the dose my doctor wanted me to take. How much would a full, effective dose cost? Pfizer holds a monopoly on Lyrica that is a detriment to the public. These price hikes and exorbitant costs have affected me terribly and are most certainly harming thousands of other Americans.
I have type 2 diabetes. I am self-employed, so money is often tight. Despite having insurance, it is difficult to pay for my insulin. At the beginning of the year, we have to pay full price for our medications. It costs me up to $450 for a single vial of insulin during that time. I have had to skip paying certain bills, such as the electric bill and my mortgage, in order to get my insulin. Patients deserve better.
I was diagnosed with ulcerative colitis in 2013 and lupus in 2019. When I was a new graduate in 2016, I had a lapse in insurance for about two months. I was working for a small music therapy practice that didn’t provide benefits. I saved up a couple hundred dollars to get my Asacol prescription thinking that would be enough, but when I got to the pharmacy, the cost was over $1,000 for the monthly refill. Not having enough money for both Asacol and rent, I decided to go without my medication –– which resulted in the worst flare-up of my life. After I was diagnosed with lupus, I moved back to my childhood home because I was out of money and exhausted by the state of health care.
I have a lot of health issues that impact my daily life, including diabetes, a previous stroke, high blood pressure, and high cholesterol. I take a number of medications to ameliorate the difficulties and pain I face every day. I’m on a fixed income, and the costs are piling up for me. I don’t think I would be alive if I weren’t able to afford my medications. If Big Pharma keeps raising prices, I will be faced with a harsh reality.
My name is Jacquie and I am a full-time graphic designer and marketing manager currently living in Waterloo, Iowa. In 2011, I was diagnosed with Crohn’s disease. The stress of the cost of my treatment has impacted my life in ways that I could never imagine. I am on multiple medications to treat my disease, including Stelara, which begins with an IV infusion that can cost up to $11,000 without insurance. From there, I have to self-administer a shot every four weeks. These shots are $22,800 per dose before insurance.
My name is Travis Paulson and I am from Eveleth, Minnesota.
I have been a Type 1 diabetic for many years, but affording insulin wasn’t that difficult as a child –– it was about $8 a vial. The problems came when I was in my late twenties and early thirties. I was working in finance full-time and going to college full time, and my insurance had a deductible of $7,500. Insulin at the time ranged from $300 to $350 a vial, and I required about five vials a month.
There were times I couldn’t scrape together $5 and was just plain poor due to these costs. On several occasions I starved myself and took less insulin than I was supposed to so my vial would last longer. Unfortunately, even doing that, I would run out of insulin. I wasn’t involved in diabetes groups and knew no other diabetics. I don’t even think there was a name for rationing insulin at the time. I thought I was in a unique situation, so I didn’t reach out for help.
All those years of rationing insulin have caused diabetes retinopathy, insulin resistance, and long-term complications that never would have occurred if I had access to affordable insulin.
Travis Paulson, MN
I would stay in bed and call into work sick until my paycheck cleared the bank. I’d then force myself up and get to a pharmacy and get insulin. It’s really hard to move when your blood sugar is that high. I remember feeling like I wasn’t going to make it, but somehow I did. Ten years ago, I had never heard of anybody dying from rationing insulin, so I figured that while it wasn’t a good thing, it wouldn’t go so far as to kill me. I’ve learned since then that I was just very lucky at the time –– I easily could have died.
It was during the financial crisis of 2007 to 2008 that I was forced to ration insulin again. Times were tough for lots of people. I remember camps of ex-financial services workers living in tents. But aside from just finding housing during the financial crisis, I had an additional problem: I had to afford my insulin. I traveled around the country working odd jobs to afford insulin and rationed what I had, living a meager existence and working warehouse jobs wherever I could.
It was after I came back home to Minnesota to get back on my feet that I decided I would no longer tolerate the abuse and hold on my life Big Pharma had. I realized I could get insulin from Canada for less than a tenth of the price I was paying in the U.S. From then on, I have been getting my insulin in Canada and helping others to do the same.
The unfortunate thing is that all those years of rationing insulin have caused diabetes retinopathy, insulin resistance, and long-term complications that never would have occurred if I had access to affordable insulin. My health is what paid the price.