Dear Secretary Kennedy,
On behalf of the 272 undersigned organizations committed to the health of our nation’s mothers, infants, children, and families, we express our deep concern over the Administration’s recent decision to eliminate the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). This sudden termination, alongside the proposed elimination of other federal newborn screening infrastructure, will delay time-sensitive detection of serious medical conditions in newborns and will impede delivery of clinical care and intervention to babies with devastating, treatable conditions during the optimal therapeutic window. We urge you to immediately reinstate the work of this important federal advisory committee and preserve our nation’s federal newborn screening infrastructure.
Newborn screening is one of our nation's most successful public health programs, serving nearly 4 million infants each year and saving thousands of babies’ lives. Our nation’s newborn screening system detects life-threatening diseases in newborn babies before they can cause irreversible damage or death. Through timely detection and treatment within the first few days of life, our national newborn screening program provides American children the best chance at a healthy life — a purpose that aligns with the Administration’s vision for a healthier America.
The ACHDNC is a critical part of the U.S. newborn screening system, providing guidance to the Secretary of the Department of Health and Human Services (HHS) on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines, and standards. The Health Resources and Services Administration (HRSA), the National Institutes of Health (NIH), the Food and Drug Administration (FDA), and the Centers for Disease Control and Prevention (CDC) all provide guidance to the ACHDNC from their specific expertise, with the ACHDNC serving as the convenor and the central point of contact for all federal agencies and the newborn screening community overall. The proposed elimination of newborn screening programs across the federal agencies would significantly limit the expertise available both within the federal government and to state newborn screening programs. These programs provide grant funding, make recommendations, and track the impact of newborn screening to help improve health outcomes.
Policymakers created the ACHDNC through a bipartisan effort to bring uniformity to the U.S. newborn screening system as part of the Newborn Screening Saves Lives Act, passed by Congress in 2007 and signed into law in 2008. Prior to the passage of the bill, only 10 states and the District of Columbia required infants to be screened for all 29 disorders recommended for screening by the American College of Medical Genetics and Genomics. Today, all 50 states and the District of Columbia require screening for at least 32 treatable conditions. The ACHDNC has served as the nation’s chief newborn screening advisory body under Democrat and Republican administrations alike, making newborn screening one of the most successful public health programs in the country.
The ACHDNC plays an instrumental role in the maintenance of the Recommended Uniform Screening Panel (RUSP), a list of disorders that the Secretary recommends states to screen for as part of their universal newborn screening program. The ACHDNC oversees the evaluation of conditions considered for addition to the RUSP, reviewing and assessing the clinical and health outcomes of early detection and treatment and the readiness of the public health system to expand newborn screening. While states determine which conditions are screened as part of their respective programs, many states have limited resources to review evidence, and it is not feasible for all 50 states to conduct their own evidence review for every condition. The addition of new conditions to the RUSP guides the expansion of newborn screening at the state level, enabling early detection and treatment of serious rare disorders and saving thousands of lives.
The ACHDNC supports individual states’ decision-making processes for adding conditions to their newborn screening panel, providing an evidence review that can be evaluated and implemented in every single state. The Committee’s work guides federal recommendations that protect our nation’s newborns from preventable death, enabling timely clinical interventions and optimized health outcomes. There is no comparable body to carry out this function in its absence. Without a clear path forward, the Administration’s elimination of this committee risks the preventable death and suffering of children with treatable rare disorders.
We strongly urge you to preserve our federal newborn screening system and reinstate the work of the ACHDNC immediately so dedicated experts can continue to guide the lifesaving work of our nation’s newborn screening programs without any further delay.