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Trump administration terminates advisory committee guiding states on newborn screening for rare genetic diseases - The Boston Globe
Advocates say the move could worsen health disparities.
www.bostonglobe.com
A federal advisory committee that provides guidance on which rare diseases newborns should be screened for has been dissolved by the Trump administration, according to a letter obtained by the Boston Globe.
The Advisory Committee on Heritable Disorders in Newborns and Children advised the secretary of the U.S. Department of Health and Human Services on what rare, genetic diseases should be included in federal screening recommendations. States decide for themselves which screening tests to require, but many rely on the federal recommendations, known as the Recommended Uniform Screening Panel, for guidance, experts said.
The National Organization for Rare Disorders, a Quincy nonprofit dedicated to individuals with rare diseases, was notified of the committee’s immediate termination in an email Thursday. The message from the HHS did not give a reason for the decision and said the agency is “identifying ways to share this information more broadly.”
“This is really devastating, especially for families who have lost children to conditions that are so severe and [can be prevented] with a newborn screen,” said Allison Herrity, a senior policy analyst at the National Organization for Rare Disorders, or NORD. “We are now unsure where the work that they’ve done to prevent that happening to other families is going to go.”
