I used to keep a treasure in my fridge. Every three months I received a box with 12 syringes worth more than everything else in my life combined. Every Friday, I looked forward to injecting myself to keep my chronic illness at bay for one week more.
Now I ration this treasure, planning my life around probable good and bad weeks. I have three syringes left.
To be clear, I have health insurance. That fact doesn’t matter because it seems that the University of Utah gambled on enough of their graduate students being healthy to save money. This decision puts me and other ill graduate students in an impossible position.
It is no secret that prescription drugs cost an absurd amount of money, according to a 2019 NPR article, the price of prescription drugs has been steadily on the rise since at least 2008. Injectables like mine rose 15% on average a year.
According to the article, drug companies sell drugs to insurance companies who negotiate prices and often get rebates and discounts. Everyone makes money. If a few of us are left to pay the full or almost full price that’s a small sacrifice to appease the pharmaceutical industry.
According to GoodRX, about 13% of Americans have health insurance that doesn’t offer any prescription coverage. In 2020, NPR estimated that a third of insured Americans went without prescriptions that were not covered or they could not afford.
For the first 15 months I was in Utah I got my medication, Enbrel, for free through the AMGEN Safety Net Foundation. When I reapplied at the end of 2021 I was rejected. I should be the textbook image of “underinsured,” which is how I originally got into the program, but this time the assessors inexplicably determined I had adequate prescription coverage.
After about 20 disheartening hours on hold across four days, I learned their decision was final. Rather ironically, I’d been kicked out of the Safety Net.
I have United HealthCare Student insurance through the University of Utah but, in this case, it’s a curse, not a blessing. Unfortunately for ill students, our plan does not include prescription coverage. Prescriptions are treated as out-of-network charges and the insurance may reimburse half of the out-of-pocket cost. The potential reimbursement moves my $10,000 medication from Mars to the moon: easier to see but no easier to reach.
Even with the reimbursement, I would have to have $60,000 of extra income to dedicate to Enbrel every year, as well as $10,000 a month to pay upfront while I wait for reimbursement. As a master’s student, I make less than $20,000 a year.
It is possible to get prescription coverage through United HealthCare Student, but it costs the institution more. If we had a copay option, students might be eligible for copay programs, mine would be $5 a month, a discount of 200,000%. If I had no insurance, I would be eligible to remain in the Safety Net.
Unfortunately, the U. of U. sold me just enough insurance for it to be useless.
I am not the only one struggling to afford my prescription in America. President Joe Biden recently called on Congress to lower the costs of prescription medications. While Congress needs to take action to help millions of ill Americans, the U. of U. should take steps as well. Either renegotiate with United HealthCare so graduate students have prescription coverage or warn prospective graduate students that if they are sick or get sick, they will be on their own.
Arthritis is progressive disorder and, without Enbrel, it will advance. Irreversible damage will be done to my body because someone decided saving the U. of U. a bit of money was worth permanently harming chronically ill students.
In a twisted way, I am thankful this is only arthritis and not another autoimmune disease. I am lucky rationing will not land me in the hospital or the grave. I am also lucky I am graduating this semester, and my next institution offers prescription coverage. If I were in a four-year program here, I don’t know what I would do.
Ashleigh McDonald is a second-year master’s student in communication at the University of Utah.