My name is Ashley Suder. I’m from Morgantown, West Virginia, and I live with lupus, an autoimmune disease where my immune system attacks my healthy tissue, resulting in painful inflammation that damages my skin, joints, blood vessels and brain. Lupus is chronic and lifelong.
The drug I take now, Benlysta, works well, but it’s especially expensive, priced at more than $35,000 a year — about $3,000 to $5,000 a month. It targets specific immune cells in my body, rather than targeting my entire immune system for suppression. And thankfully, it can be administered at home — which has been important during a global pandemic that’s especially dangerous to people like me with underlying conditions and suppressed immune systems. But Benlysta’s prices are so high I know I may not always be able to get this drug.
Going without expensive medications or substituting a different one because of drug prices has negatively affected me my whole life. Some of the more expensive drugs I’ve previously taken include Xeljanz, Rituxan, and an extended release version of prednisone called Rayos. High drug prices have made it so my doctors have to completely change the plan of action, more often than not to the detriment of my health. Drug prices have made me sicker and far less functional than I would be if I had affordable access to the proper medications.
I currently work as a nursing assistant, and at times almost my entire paycheck goes towards paying for my medicines. I’m constantly relying on samples from doctors to treat my condition because it’s just so expensive. It’s no way to live, but I don’t have a choice. I need to stay as healthy as possible so I can keep working and continue my education.
If I were to be left without my prescriptions, I wouldn’t be able to continue working, wouldn’t be able to go to school, and wouldn’t be able to become a nurse. Drug prices have got to come down. It’s wrong that I live paycheck to paycheck and in constant fear of losing my medications while Big Pharma rakes in profits. We need help from lawmakers to lower prescription drug prices immediately.