My name is Samantha Rynearson and I’m from Selinsgrove, PA. I was diagnosed with Crohn’s disease after over a year-long battle fighting severe unexplained anemia. It was a relief to finally have answers, but it was devastating to learn that there was no cure and that I would be dealing with this disease for the rest of my life. My mental health took a huge dive trying to process the information, and I often found myself worrying how it was going to affect me, my family, and the goals I had set for my life.
After failing multiple medications, I started taking Stelara. For the most part, I never worried about the exorbitant price because I was still on my mom’s health insurance, and I had a copay assistance card from the manufacturer to help with the costs. But once I turned 26 and started paying for my own insurance, I realized just how expensive having a chronic illness is. In addition to all the expenses associated with lab work, CT scans, and colonoscopies, I found out that each of my Stelara injections costs between $21,000 and $26,000.
The year 2020 brought a lot of changes for many across the world, including myself. I was laid off from the company I had worked at for almost four years, my husband lost steady work, and my family and I had to move in with my in-laws across the state. I had to find a new job even after my previous workplace asked me to return, since I was now living over 200 miles away and remote work was not feasible for the long-term.
As with starting most new jobs, we had a lapse in insurance coverage. Unfortunately, my insurance lapse was right in the middle of being due for another Stelara injection. A single injection of Stelara costs more than the copay assistance card will cover in a one-year period, and having health insurance is a requirement to use the assistance card in the first place. All other insurance options cost more than the combined monthly income that my husband and I earn.
So there I was: no insurance, no financial assistance, and no way to get the medication that kept me out of the hospital for nearly three years. I had a dose of Stelara in my fridge that I was told to throw away the year before because it looked a little cloudy. But desperate and afraid of not having the medication, I used it.
I had kept the dose in my fridge for over a year because I was afraid of this exact scenario playing out. I injected myself with something I was told was garbage because I didn’t have any other choice.
Like many other medications, Stelara is not affordable. A single dose of Stelara costs roughly 46 percent of what the median household in America makes in an entire year. And in the United States, a dose of Stelara costs 3.5 to 6.75 times more than it does in other countries.
But why? Stelara doesn’t come packaged in gold foil in the United States. It doesn’t magically work better on U.S. soil than in other countries. It’s the same medication and same packaging, but the cost is absolutely outrageous.
I continue to find myself worrying all the time about being able to afford the medication that gives me a quality of life worth living. I didn’t ask to have Crohn’s disease, and I didn’t ask to take a medication that costs over $20,000 every 8 weeks.
Drug pricing in America has gotten out of hand, and our legislators need to step up to the plate to help combat it. High drug prices are hurting millions of Americans who deserve to live a life without having to choose between putting food on the table and taking care of their health. It’s time for change.