El Paso mother urges access to Duchenne treatment

EL PASO, Texas (KVIA)-- An El Paso mother traveled to Washington, D.C., this week to advocate for her 14-year-old son, who is living with a rare genetic disorder.

Angelina Olivera said her son, Ryu, has Duchenne muscular dystrophy, a progressive muscle-wasting disease that primarily affects boys and can significantly shorten life expectancy.

Olivera attended a U.S. Senate Special Committee on Aging hearing on Capitol Hill, where doctors and patient advocates urged lawmakers to press the U.S. Food and Drug Administration to expand access to medications that could extend the lives of people living with rare forms of muscular dystrophy.

“I felt today was the first time in a long time that I felt hope,” Olivera said. “I was grateful to sit in on this hearing here at the U.S. Senate in Washington, D.C., and I’m very grateful.”

During the hearing, advocates argued that regulatory delays can have life-or-death consequences for families waiting on treatment.

“By blocking treatment, the FDA makes our lives harder,” Olivera said. “My son is 14 years old. He can die tomorrow. I feel like the FDA is more focused on bureaucracy versus patients’ lives. And we feel unheard. We feel unheard by the FDA.”

One medication referenced during the hearing was previously halted by the FDA before being allowed to resume months later. However, Olivera said her son is among many patients who still have not gained access to the treatment.

Duchenne muscular dystrophy causes gradual muscle degeneration and weakness. There is no cure, though some therapies may help slow the progression of the disease. Olivera said she hopes sharing her son’s story will bring urgency to federal regulators and expand access to potentially life-extending medication.