I'm 25 with a terminal disease. We need an FDA commissioner that hears people like me

I just turned 25.People with Duchenne muscular dystrophy (DMD) aren't expected to see another birthday after this one.DMD is a progressive disease; my muscles weaken over time and things that used to be automatic now take planning, assistance, or simply aren't possible anymore.

Even sleeping can be hard.Bed sores are now an issue.

Basic physical function takes work most people never have to think about.I know what the statistics say.I am not ready to let them write the ending of my story.TRUMP FDA PICK REPEATEDLY SIDESTEPS SANDERS' UNIVERSAL HEALTHCARE DEMANDS IN HEATED CLASHI want to grow my career, I want to get married and start a family.

I want to wake up decades from now and realize that turning 25 wasn't the beginning of the end — it was just another birthday I was blessed enough to reach.That's why I'm watching the Senate confirmation fight over Dr.Heidi Overton, the nominee to lead the FDA, more closely than most 25-year-olds ever watch Washington.For most Americans, an FDA commissioner is just another name in the news.

For the 30 million Americans like me living with a rare disease, that person can decide how many options I have and how much time I have to use them.To be clear: I'm not asking the FDA to abandon science.I respect doctors, clinical trials and hard evidence.

I know some drugs don't work and some carry real risk.But there's a question Washington doesn't ask often enough: who gets to decide how much risk a patient is willing to accept?If I understand the risks, my doctor understands the risks, and there's real evidence a treatment could help, why does a regulator in Washington get the final word on whether I'm allowed to try?Congress already recognized part of this principle when President Trump signed the Right to Try Act into law in 2018.That law was a major step forward because it affirmed something patients facing life-threatening diseases have always known: when approved options are exhausted, and a doctor believes an investigationa...