Just one week after my diagnosis, I was denied access to a rehab facility. My condition was rapidly worsening, but my insurance company said no. Later, when I needed emergency surgery, I was denied again. My mom had to fight for coverage on her own—making calls, filing appeals, and pleading with insurers, all while my life was on the line.
That’s the reality for too many patients like me.
When I was diagnosed with Guillain-Barré syndrome as a young adult, I became paralyzed from the chest down in just a matter of days. What I didn’t know then, was that the illness itself wouldn’t be the only thing I’d have to fight. I had no idea how hard it would be to battle our insurance system and middlemen like pharmacy benefit managers (PBMs).
Today, I’m proud to be a six-time national gold medalist and a national record holder in paraswimming. I represent Team USA and am training to compete in the 2028 Paralympic Games, but I wouldn’t be here if I hadn’t had access to the innovative treatments that helped save my life.
Recently, at PhRMA’s annual researcher fly-in, I had the chance to share my story with the scientists developing the next generation of medicines. I thanked them for the tireless hours they devote to finding cures for people just like me and also had a message for lawmakers: if Congress continues to turn a blind eye to PBMs and insurance companies anti-patient practices, or enacts sweeping anti-innovation price control policies, patients like me could lose access to life-saving care.
Too often, conversations in Washington don’t reflect what’s really happening to patients. When policymakers talk about slashing costs or limiting how medicines are developed and delivered, I worry they forget who’s most affected.
I love my country, and I am proud to represent it on the international stage, but I need lawmakers to think about patients before supporting policies that harm our community. I’ve seen what happens when care is delayed, denied, or deprioritized. No one should have to fight the way I have to survive.
