A 25-year-old man living with Duchenne muscular dystrophy is urging senators to confirm Dr. Heidi Overton as the next commissioner of the Food and Drug Administration, arguing that the agency should treat patients as partners in their own survival rather than bystanders to it.
In a personal account, the writer describes how the progressive disease has stripped away basic physical functions. Sleeping is difficult, bed sores have become an issue, and tasks that most people never think about now require planning or assistance. People with Duchenne are not expected to live much beyond their mid-20s, but he says he is not ready to let statistics write the ending of his story. He wants to build a career, get married, start a family, and reach future birthdays.
For the roughly 30 million Americans living with a rare disease, the FDA commissioner is not just another name in the news. That official can determine how many treatment options exist and how much time patients have to use them. The writer says he is watching the Senate confirmation fight over Overton more closely than most people his age watch Washington.
He is careful to say he is not asking the FDA to abandon science. He respects doctors, clinical trials, and hard evidence, and acknowledges that some drugs do not work and carry real risks. But he argues that Washington rarely asks who should decide how much risk a patient is willing to accept. If a patient understands the risks, a doctor understands the risks, and there is real evidence a treatment could help, he asks why a regulator should have the final word on whether he is allowed to try it.
Congress recognized part of that principle when President Trump signed the Right to Try Act in 2018. The law affirmed that when approved options are exhausted and a doctor believes an investigational treatment may help, patients should not be treated as passive observers in their own survival. The writer says Right to Try was not the end of the idea but the beginning of a patient-centered philosophy that should shape the FDA’s culture more broadly.
Senator Ron Johnson and Representative Diana Harshbarger have introduced Right to Try 2.0 to carry that principle into individualized treatments that do not fit neatly into the FDA’s traditional approval model. The writer supports that effort but says the next FDA leader should not have to wait for Congress to force a more patient-centered approach.
The FDA already operates an accelerated approval pathway for serious, life-threatening diseases because waiting years for traditional clinical endpoints can cost patients the thing they cannot get back. The agency has used that pathway for multiple Duchenne treatments. For patients with Duchenne, waiting is never neutral. Every year can mean another loss of strength, another limitation, and another piece of independence gone for good.
The writer’s brother also lives with Duchenne and has experienced the other side of the fight: even when a treatment exists, getting it can be its own battle. Traveling hours from home for a multiyear clinical trial may sound manageable in a Washington conference room, but it looks very different when your body is working against you and the therapy is not available at your own hospital.
He wants the next FDA commissioner to listen to patients who live with disease every day, not just read about it in books or see it through a microscope. He also hopes the FDA brings on Dr. Houman Hemmati as deputy commissioner. Hemmati has spent his career in biotech building treatments for rare and degenerative diseases rather than regulating them from the outside. The writer acknowledges that critics may say he is trying to get a friend into the room. He responds that Hemmati does not just know his disease; he has lived it with him.
He is not asking anyone to promise him forever. He is asking for the chance to fight for the future he still sees. He has already outlived what many expected. Senators considering Overton’s nomination face a choice, he writes: confirm a commissioner who will treat patients as partners in their own survival, or keep a system that treats them as bystanders to it.