On January 16, HRSA’s Secretary Advisory Committee (SAC) unanimously voted in favor of moving ALD newborn screening forward to an external evidence review committee. Dr Jerry Raymond, Pediatric Neurologist at University of Minnesota Medical Center, Fairview, and Dr. Amber Salzman, President of The Stop ALD Foundation, spoke at the meeting’s public comment section. I supplied written comments about New York State and the fact that this will affect 235 babies each year in the United States. Over the next 2 years, the External Review Committee will review the disease, review the newborn screening test, understand what happens when a newborn would be identified to have ALD, and look at the therapies. A recommendation will then be made to the SAC whether ALD should be added to the Recommended Uniform Newborn Screening Panel (RUSP). The process to get ALD added to the RUSP started in September 2012 and the hope is that this will NOT take an additional 2 years to review.
We remain committed to ensuring that all newborns are screened for ALD so treatment can be applied early, saving countless children and families from suffering from a treatable disease that most often is diagnosed too late.