OPINION:
Last month, I experienced the first moment of hope since my son received a diagnosis of the same terminal disease that killed my two brothers.
So why do Food and Drug Administration officials seem bent on tearing away that hope and making Ryu’s life shorter, harder and more painful?
I attended last month’s Senate hearing about the FDA blocking treatments for children with terminal rare diseases. I’m 43 years old, and I watched my brothers die from Duchenne muscular dystrophy at 20 and 22 years old. My 14-year-old son is on the same path.
At the hearing, senators from both parties put aside partisan bickering and united to help children like Ryu. Researchers and patient advocates told stories of the FDA putting up roadblock after roadblock, and everyone seemed to understand what we need to do in order for thousands of children to have longer, healthier lives.
Everyone but the FDA, that is. Despite requests from patients and their parents, efforts by senators and the work of pioneering researchers developing life-changing drugs, the FDA refuses to listen to the facts.
One promising sign of possible action from the FDA was last week’s announcement of the departure of Dr. Vinay Prasad. Dr. Prasad has been a vocal opponent of rare-disease approvals, and the agency now has the opportunity to leave his obstructionist policies with him.
I’ve spent more than 40 years on the front lines of Duchenne muscular dystrophy. Last month’s hearing made me believe that things could change. There was unity across the aisle, from the halls of Congress to patients across the country.
The FDA doesn’t seem to want to help us. I don’t know why that is, but I’m begging Commissioner Marty Makary to put kids like Ryu first.
ANGELINA OLIVERA
El Paso, Texas
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