My name is Genevieve, and I was diagnosed with ulcerative colitis in 2013 and lupus in January of 2019. My diagnoses have always responded very well to drugs, so as long as I had access to them, I have been able to achieve enough symptom relief to be able to work.
In 2016 when I was a new graduate, I had a lapse in insurance for about two months. I was working for a small music therapy private practice that didn’t provide benefits. I saved up a couple hundred dollars to get my Asacol prescription thinking that would be enough, but when I got to the pharmacy the cost was over $1,000 for the monthly refill. Not having enough funds to pay for that and rent, I decided to go without my medication –– which resulted in the worst flare-up of my life. A couple months down the road when I was finally able to get insurance, I tried steroids to ease back into remission, but eventually had to start an IV infusion drug called Remicade to get my symptoms under control.
Going on an expensive drug like Remicade made me realize the importance of having a job with benefits, and while it was my dream to have my own music therapy private practice, I needed to find a job that would help cover my medical expenses and provide the benefits I needed. So I took a job in Nashville in a health care setting, thinking my problems were solved, but it was far from over.
After I was diagnosed with lupus in January, I had to switch to an IV drug called Entyvio. My insurance only covered this drug after I paid my out-of-pocket max, so the bill for my first treatment was the biggest I’d ever seen, costing me over three months worth of pay. Having been out on unpaid medical leave trying to get my debilitating lupus symptoms under control, I had no choice but to put my independence and ego aside and ask my parents to help.
Knowing that my new drugs cost about $20k an infusion –– and realizing that each year I’d be hitting my out of pocket max just to cover only one of the many drugs that I need to keep working –– I knew I couldn’t financially start the new year in Nashville. I found a job close to my parents and I moved back to my childhood home to New Jersey because I was out of money and exhausted by the state of health care making it so difficult to be a functional, working citizen.
I want so badly to feel in control of my life. My lupus and UC are under control now because my fabulous team of doctors worked together to find the right combination of drugs, diet, and lifestyle choices to keep me feeling healthy and able to do what I love, which is working as a music therapist. But knowing that my ability to work and be a productive member of society is totally reliant on affording unaffordable drugs is terrifying.