RFK Jr. adds fast-moving, debilitating disorders to newborn screening recommendations

Health and Human Services Secretary Robert F. Kennedy, Jr., on Tuesday added Duchenne Muscular Dystrophy and Metachromatic Leukodystrophy disorders to the Recommended Uniform Screening Panel.

Kennedy approved their addition to newborn screenings after scientific review and public comment, according to HHS. Detecting both conditions early lets children receive therapies approved by the Food and Drug Administration at the most effective time, which helps slow disease progression and preserve their quality of life.

"Early screening gives every child a fair chance at timely, effective care, and it delivers families the answers and treatment options they deserve—right when they need them most," Kennedy said.

The two disorders are usually not diagnosed in children until age four or five, when functional decline or significant muscle loss has already occurred, according to HHS. Adding them to the RUSP will help children retain functions for longer periods and allow parents to avoid long delays, multiple specialist visits, and financial and emotional strain that often occurs with the years-long diagnostic search.

The HHS secretary recommends conditions for universal newborn screening in the RUSP, and states choose whether to adopt each screening.

“Early data changes the entire trajectory for affected children and their families,” said Health Resources and Services Administrator Tom Engels. “A confirmed result in infancy replaces years of guesswork and helps families make informed decisions about treatment and support.”