The National Association of Pediatric Nurse Practitioners (NAPNAP) is deeply concerned by the Department of Health and Human Services’ (HHS) termination of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) which is responsible for managing the Recommended Uniform Screening Panel (RUSP), a core list of 31 congenital disorders recommended by HHS to states as part of their universal newborn screening programs. Newborn screening is essential to identify conditions that can affect a child’s long-term health or survival. Early detection, diagnosis, and intervention can prevent death or disability and enable children to reach their full potential.

Without ACHDNC’s oversight of RUSP and the ability to incorporate new conditions as science evolves, pediatric health experts fear growing disparities in child health. In the absence of evidence-based federal guidance, states will have to independently evaluate complex scientific data to guide their newborn screening programs. This places a significant burden on states—particularly those facing budget constraints—which may lack the resources needed to assess evidence effectively and make informed decisions to improve child health outcomes.

NAPNAP urges HHS to reconsider its decision to terminate ACHDNC, a valuable resource in the campaign to make America healthy.

 

April 18, 2025