My son has a terminal disease — why FDA delays are failing families like mine
Angelina Olivera, a mother and caregiver to her 14-year-old son Ryu who has Duchenne muscular dystrophy, criticizes the FDA for delays in approving experimental treatments that could save lives. She argues that bureaucratic caution is prioritized over urgent patient needs, especially for rare disease communities with limited financial resources. The departure of FDA biologics director Dr. Vinay Prasad presents an opportunity for reform, she says, urging Commissioner Dr. Martin Makary to appoint a successor who values patient access and regulatory flexibility.
- ▪Angelina Olivera's son Ryu has Duchenne muscular dystrophy, a terminal illness that also killed her two brothers.
- ▪Ryu's monthly steroid treatment costs $30,000, with significant out-of-pocket expenses despite insurance and nonprofit assistance.
- ▪FDA review delays and restricted access to therapies have frustrated rare disease families, who feel the agency prioritizes caution over urgent patient needs.
- ▪Dr. Vinay Prasad, FDA’s biologics director, is departing, creating an opening for leadership change in treatment approval processes.
- ▪Olivera urges FDA Commissioner Dr. Martin Makary to appoint a new director who supports regulatory flexibility and patient access to experimental drugs.
Opening excerpt (first ~120 words) tap to expand
Opinion My son has a terminal disease — why FDA delays are failing families like mine The departure of FDA biologics director Vinay Prasad creates an opportunity for a reset By Angelina Olivera Fox News Published April 29, 2026 5:00am EDT Facebook Twitter Threads Flipboard Comments Print Email Add Fox News on Google close Video Dr. Marty Makary on estrogen patch shortages and FDA's role FDA Commissioner Dr. Marty Makary discusses the demand surge and shortages of estrogen patches. He explains the FDA's decision to remove the black box warning, leading to increased demand, and its impact on women's health and menopause.
…
Excerpt limited to ~120 words for fair-use compliance. The full article is at Fox News — Latest.
Discussion
0 commentsMore from Fox News — Latest
