My name is Jay Gironimi and I live in southeastern Connecticut. When I was 9 months old, I was diagnosed with cystic fibrosis. CF affects the lungs and digestive system, making it hard to breathe and eat without treatment. In the mid 80s when I was diagnosed, it was predicted that about half of people born with CF would die before the age of 28. Growing up, I had to take pills just to be able to eat and for the first 12 years of my life, the only treatment for my lungs was to physically shake the mucus off of them.
Treatment for CF changed drastically in the early 90s with Pulmozyme, a prescription drug that helps thin out mucus and allows CF patients to breathe easier. At the time, the monthly price of Pulmozyme was $1,000, and with my parents’ insurance, we were able to afford my prescription.
After turning 18, I knew I would need to stay insured to afford my medication. I spent years jumping through hoops to keep insurance since I knew if I ever became uninsured, I wouldn’t be able to afford my prescription’s full price.
In 2008, I was on state insurance and had to prove that I personally spent more than $1,300 out of pocket on drug costs, because I made too much at my temporary summer job –– where I made minimum wage for about 25 hours a week. At the time, I thought the price of Pulmozyme was $1,500, but that’s the price for an insurance company. For a 25 year old maxing out a credit card because they’ve started coughing up blood, the price was $1,900. I cleared my out-of-pocket maximum with one prescription.
A common refrain throughout my life has been “you need to get a job with insurance.” But it’s not easy to work full time when you can’t breathe. It took me a very long time to find a job that I could do for 40 hours a week that also had insurance that would cover my medications –– doubly difficult in the pre-ACA days when I had to prove six months of continuous insurance coverage before I could get new insurance coverage.
I now work at a casino, which provides me with good insurance coverage and has a pharmacy where I’m able to refill my prescriptions. I’ve recently started Trikafta, which treats nearly all of my symptoms. I now am living comfortably and my cystic fibrosis feels like a completely different disease. But the $300,000 yearly list price of my Trikafta, in addition to the cost of the pills I need to digest food, the various inhaled medications I have to take, and the insulin I now need due to diabetes caused by my CF, the rising prices terrify me. If my insurance went away completely and I had to purchase my prescriptions out of pocket, it would cost me about $32,000 to stay alive for just a single month. I do not have that money, though I could max out some credit cards and still only get about halfway there.
Patients shouldn’t have to constantly live in fear of what would happen if they faced the full price of their medicine. We shouldn’t be forced to decide between financial ruin and detrimental health outcomes. The fear of paying the full price of my medicine compels me to speak out and advocate for more affordable prescription drugs.
