June 15, 2022 Blogs

The current drug pricing system isn’t working for patients like me.

Patient Advocate Emily Byrn sits on a limestone ledge, smiling at the camera with the ocean in the background.

My name is Emily. I’m a 26-year-old from Washington, D.C., and I live with psoriatic arthritis.

Growing up, I always had various injuries and illnesses and tendonitis in nearly every joint. I never had a specific diagnosis to explain all of these symptoms until five years ago. My journey to being diagnosed with psoriatic arthritis was difficult, involving dozens of different medications and doctors trying to figure out a diagnosis.

During the week before my college graduation, my foot and toes began to swell. The pain was excruciating, as bad as, if not worse, than when my appendix nearly burst. Not only was this outrageously painful, but it impacted my ability to walk.

My rheumatologist told me she would make sure I would be able to walk across the stage for graduation. With some steroids and other treatment, I was very lucky to be able to do so and felt fine until I returned home a few weeks after graduation.

As my symptoms persisted, my doctor wasn’t sure what was going on. At the time, my symptoms didn’t fit exactly into any category of diagnosis. Eventually, I was diagnosed with psoriatic arthritis and began taking methotrexate.

Although methotrexate really began to help my joints, the drug also brought a lot of side effects, leaving me exhausted for days after treatment. I eventually switched to Humira, which brought relief to my joints with minimal side effects. The only concern was that this prescription carried a list price of over $6,400 per month. And Abbvie, Humira’s manufacturer, has hiked Humira’s price 400% over the past 15 years – I know that price will very likely keep increasing in the future if nothing changes.

I’m lucky that I have insurance that allows me to afford my medication, but I know that could change at any moment. The stress of my drug’s price really weighs on me and affects decisions I make every day and for my future. I think about Humira’s price when I switch jobs — worrying that I might have to pay the list price or a larger portion of the price on different insurance.

The current drug pricing system isn’t working for patients like me.

There are millions of young patients who need high-priced medicines. We should be able to access and afford the medicines we need, the medicines that best treat our conditions. But right now, we have to worry constantly about high prices and the uncertain future they bring. Manufacturers constantly hike the price of drugs like Humira and prolong their pricing monopolies through patent gimmicks.

I need Congress to act now to pass comprehensive drug pricing reform that prevents price increases for drugs like Humira and gives Medicare the ability to negotiate lower drug prices. We can’t wait any longer.




Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.