Athena Joost: When the Right Medication Costs Too Much

Athena Joost, a 28-year-old nurse living in Oregon, knows firsthand how prescription drug prices can impact treatment options. Two years ago, she was diagnosed with Crohn’s disease, a chronic condition that can cause debilitating flare-ups. After initial treatments failed, her doctor recommended a biologic medication. Together, they decided on Stelara (Ustekinumab). “I kind of picked Stelara. It just seemed like it would probably go the best with my goals cause it’s one infusion to start and then the two-month shot,” Athena explained.

The medication worked exactly as intended. “Honestly, getting on it was life changing. I can’t tell you how much my anxiety decreased,” she said. “I was at the point where I wouldn’t leave the house because I was planning where I could go to the bathroom. Then I remember going hiking and realizing on the drive home that I hadn’t even thought about it. Anxiety has completely reduced by like tenfold.”

Athena described how quickly her symptoms improved. “Once it starts working, it was like I don’t even have a G.I. disease anymore.” For the first time since her diagnosis, she was able to live her daily life without constant fear of her condition interfering.

Stelara not only improved Athena’s health but also allowed her to thrive at work. As a nurse in the ICU, she said, “It made work better … way less stress because I’m not freaking out about having to go to the bathroom.” Being able to focus fully on her patients, without the constant burden of her condition, marked a profound shift in her professional life.

But just a few months later, her insurance company intervened. “I was told it was because of cost. My insurance didn’t want to pay like $22,000 a shot anymore,” she said. Instead, she was switched to a lower-cost biosimilar version.

While the new medication has continued to work, the transition came with stress. “This was my first time being on a biologic and I was told that a lot of the times if you start with your body reacts well that you don’t have to switch for a long time. Switching seemed very stressful to me because I was like, ‘This is working. Why do we have to change?’”

On top of the pressure to switch medications, Athena faced a complicated system for paying for Stelara. She relied on a co-pay assistance program that kept her out-of-pocket costs between five and ten dollars, but the process was cumbersome. “There’s a lot of hoops to jump through though. They wouldn’t mail my prescription because it was too expensive, so I had to go in and pick it up. It was like a whole day to make sure I got it,” she explained. “You have to have multiple different numbers in their account and then call the co-pay people, and then they fill your card, and then you pay with your co-pay card, and then you pay with your own credit card. It was just a lot of hoops.”

The savings, however, were enormous. Without the co-pay card, Athena estimated she would have paid about $300 out-of-pocket for each shot. “The co-pay card covered like $295 of that,” she said. “I wouldn’t want to pay $300 every two months, so it was nice, but it came with a lot of administrative hassle.”

For Athena, Stelara transformed her health. Yet the drug’s price, about $22,000 per injection, forced her insurer to stop covering it. “I would prefer to just stay on Stelara, honestly, but I think the cost is a huge barrier for insurance companies,” she said.

Athena’s story highlights how prescription drug prices impact patients’ lives in ways that go far beyond health. For her, Stelara meant the difference between daily suffering and being able to live, work, and care for her patients as an ICU nurse. But because of the drug’s staggering cost, she could not stay on the treatment that worked best for her.