My name is Brad and I’m a publishing director living in Santa Cruz, California. I was diagnosed with cystic fibrosis as an infant and I received a double-lung transplant in January 2017. Today, I live at the mercy of immunosuppressive medications that prevent my immune system from destroying my lungs.

Thanks to these medications’ steep costs, I also live at the mercy of drug prices.

Missing even a few immunosuppressant doses could lead to my rapid demise. And yet, lung transplant recipients face a unique, and cruel, drug affordability hardship: All of us need immunosuppressants, but none are approved by the FDA for use in lung transplantation. All such medications must be prescribed off-label, meaning we need special approval from insurers for drugs not normally covered. This introduces insurance reimbursement challenges, which means we are frequently at risk of facing many thousands of dollars in medication costs. My transplant drugs alone carry a list price of about $3,875 monthly, and my underlying condition, cystic fibrosis, has no cure yet. I still need other expensive CF medicines.

Even though I’m still able to work, others with cystic fibrosis often can become disabled and must rely on Medicare –– even though they are far from retirement age. That program brings its own massive challenges for transplantation recipients regarding drug costs. For example, Medicare covers only three immunosuppressants for off-label use in lung transplant, but side effects and toxicity prevent many patients from using those three. A 2018 study in the American Journal of Transplantation found that in their first year post-lung transplant, 71.1 percent of patients on Medicare are vulnerable to a denied claim, exposing them to the full brunt of drug costs. To further complicate matters, most patients under 65 years of age receive only three years of immunosuppressant coverage. This is significant for someone like me. Though I’m young, like others with CF, I could become too sick to work and have to rely on Medicare as a person with a disability. 

I find this terrifying, personally, and unjust for all people who have survived organ transplantation only to live with the constant risk of being unable to afford expensive drugs they need to keep them alive. I know patients who have had to fundraise for their lives or were forced into debt because they couldn’t afford transplant medications. 

I know I’m one of the “lucky” ones, to have company-provided insurance that reduces the total monthly copay of my 14 medications to a few hundred dollars monthly once I meet my deductible. But that’s still a lot of money. I’m a young person facing a future with chronic illness, and it’s wrong that I have to pay so much for my drugs that I can’t even build a short-term emergency fund. As an economy-shattering pandemic strikes, I can’t avoid wondering what would happen if I were to lose my job. It’s difficult to secure more than a month’s dose of off-label medication, so an insurance lapse could prove fatal. It’s on these days that I realize the tragic wisdom of transplant centers requiring proof of financial means and social support before approving a candidate for a lease on a new life.

Transplantation should lead to new life –– not an extension of suffering. It is an injustice to be forced into a revolving door of medical crisis and financial instability. To fall into the latter is to fall right back into the former. No one should sacrifice all they have to survive, only to be kicked back down by grievous drug costs.