The National Association of Certified Professional Midwives (NACPM) strongly opposes the U.S. Department of Health and Human Services’ (HHS) decision to eliminate the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) , a vital expert body that has helped ensure babies across the country receive timely screening for rare but treatable conditions.
Each year, nearly 4 million babies are born in the United States. A simple “heel prick” test, done within the first few days of life, can detect serious conditions like cystic fibrosis and sickle cell anemia. When caught early, these conditions can often be treated, helping prevent disability or even death.
Until now, this federal advisory committee reviewed the latest science and made recommendations for the Recommended Uniform Screening Panel (RUSP), helping states determine which conditions to include in their newborn screening programs. Its work promoted consistency, equity, and access to early care, no matter where a baby was born.
With the committee disbanded, no new conditions can be added to the RUSP. Votes to include life-threatening disorders like Duchenne muscular dystrophy and metachromatic leukodystrophy were imminent, but that progress has come to a halt. States are left without coordinated guidance, leading to inconsistent screening, growing disparities, and lives potentially lost.
This decision undermines confidence in our public health infrastructure. It eliminates a cost-effective, expert-led body that provided essential federal guidance in protecting newborns through early detection and prevention. Framing this as administrative streamlining overlooks the real impact: increased risk to the most vulnerable and a diminished capacity to address persistent public health challenges.
This decision is especially dangerous in the context of the U.S. maternal and infant health crisis. More than 5.6 million people live in maternity care deserts, counties with limited or no access to obstetric providers or birthing facilities. In these communities, where access to hospital-based care is limited or nonexistent, Certified Professional Midwives (CPMs) and other community-based providers are often the primary,and sometimes only, clinicians ensuring newborn screenings happen, particularly in home and birth center births.
Without national standards and support, midwives and families in these underserved areas face even more obstacles to safe, effective care. Removing this federal committee puts newborns at greater risk and undermines progress towards more equitable outcomes. NACPM supports both protecting parental autonomy and the need for strong public health systems. When newborn screening and data collection are done with transparency, consent, and a focus on equity, they help close gaps and improve outcomes for families across communities.
NACPM calls on HHS to immediately reinstate the Advisory Committee and restore a coordinated, evidence-based approach that protects all babies, regardless of geography, income, or birth setting. Newborn screening is one of the most effective tools in our public health system. We call on policymakers to strengthen the infrastructure that makes this care possible, not dismantle it.