I’m Kami Guiden, from Silver Spring, Maryland, and I’m 33 years old. For just over 20 years I’ve lived with Crohn’s disease, an incurable and chronic and inflammatory illness of the gastrointestinal tract. I also live with celiac disease.
Affording my medications to manage my conditions is always on my mind. I absolutely have to maintain a job with sufficient coverage to pay for my expensive drugs. But the drugs I need are so costly; job to job, I live at the mercy of drug prices and worry about if and how I will be able to afford my next infusion or refill. I’ve had to wait for my paycheck to deposit before getting refills, ration my prescriptions, and stop taking my drugs altogether because of the prices. At one point I owed $1,500 for the anti-inflammatory drug Mesalamine, a generic version of Pentasa, to treat a flare-up, and I just couldn’t afford it. After I lost a job, I had to stop taking an important and expensive Crohn’s treatment, Remicade. When I got a new job and wanted to re-start the medication, I was terrified not only of the drug’s price but to ask for the time I needed for infusions. During the pandemic, people are fearful about endangering their employment with any special requests. It’s a lot to deal with on top of worrying about drug prices for a person already managing multiple chronic conditions. Just thinking about any of it is so incredibly stressful.
For now, I’m not taking any of my medications. I’m waiting. Waiting because I’m afraid of catching COVID-19 at my regular checkups, because I’m afraid to ask my employer for the time I need to take care of myself, and because of worry that I won’t be able to afford my drugs at all.
People like me don’t have more time to wait for our lawmakers to make the reforms we need to lower drug prices. We shouldn’t have to.