ADLM Joins Stakeholders Urging HHS to Re-Establish Newborn Screening Infrastructure

On May 5, ADLM joined more than 270 medical, patient, and public health organizations in a letter to HHS Secretary Robert F. Kennedy Jr. urging the immediate reinstatement of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) and the preservation of key federal newborn screening infrastructure. The letter expressed deep concern over the recent decision to terminate ACHDNC and proposed cuts to other federal programs that support newborn screening efforts. These changes threaten the early detection of serious, treatable conditions and risk preventable harm to infants across the country.

ACHDNC has historically played a central role in reviewing evidence and maintaining the Recommended Uniform Screening Panel (RUSP), which states use to guide the addition of new conditions to their screening panels. Without this infrastructure, states may be forced to make these decisions in isolation, limiting consistency and access to life-saving interventions.

ADLM supports a strong, evidence-based federal role in newborn screening to ensure all families — regardless of location — can benefit from early and accurate diagnostic testing.