FDA Blocked Lifesaving Cure For Baby With Rare Disease, Forcing Family To Go Overseas & Raise $500,000

Podcast: Ask Dr. Drew · Dr. Drew

Opublikowano: 2026-09-18

When Kendra Riley‘s daughters were diagnosed with fatal metachromatic leukodystrophy, her family was forced to raise $500,000 and relocate to Italy – because the lifesaving treatment was not FDA approved. Today, Riley is fighting for Right to Try 2.0: congressional legislation designed to let people with ultra-rare diseases access cutting-edge individualized therapies without bureaucratic delays from the FDA. The Goldwater Institute says the bill would create a federal pathway for patients with rare and ultra-rare diseases to access gene-based therapies designed for one person alone, which cannot move through the FDA’s clinical trial process in time to save a life...