A Step Backward: HRSA’s Elimination of the ACHDNC Threatens Progress on Newborn Screening

A Step Backward: HRSA’s Elimination of the ACHDNC Threatens Progress on Newborn Screening

Author: NCMVF Board of Directors

We at the National CMV Foundation are deeply concerned by the recent decision from the Health Resources and Services Administration (HRSA) to terminate the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)—a move that disrupts decades of bipartisan, evidence-based public health progress in newborn screening.
 
What Was the ACHDNC?
The ACHDNC was a federal advisory committee made up of medical experts, researchers, public health officials, and patient advocates. Since its establishment in 2003 (established under the Public Health Service (PHS) Act, 42 U.S.C.217a:Advisory councils and committees), the committee’s purpose was to provide national recommendations on which conditions should be included in the Recommended Uniform Screening Panel (RUSP)—a list of disorders for which every newborn in the United States should be screened shortly after birth.
 
The committee served as a critical gatekeeper, evaluating nominated conditions based on rigorous review of scientific evidence, treatment availability, and the ability of states to implement screening effectively. Over the past two decades, the ACHDNC has played a key role in adding lifesaving screening tests to the RUSP, directly improving health outcomes for countless children and families.
 
How the ACHDNC Was Terminated
In March 2025, HRSA quietly dissolved the ACHDNC, reportedly citing concerns over the time and cost of managing the committee. The termination came without robust public discussion or stakeholder input and has left a critical gap in the nation’s newborn screening infrastructure. With no federal mechanism now in place to evaluate and recommend conditions for the RUSP, the future of equitable, evidence-based newborn screening in the U.S. is in jeopardy.
 
The Importance of the RUSP and the Federal Review Process
The RUSP provides a standardized list of conditions that all states are recommended to include in their newborn screening programs. While not legally binding, the RUSP serves as a gold standard and strong incentive for states to adopt comprehensive screening programs. The ACHDNC played a central role in ensuring that only conditions meeting strict criteria—early detection, effective treatment, public health feasibility—were added to the RUSP.
 
Nominating a condition to the RUSP through the ACHDNC involved an exhaustive process:

1. Submission of a nomination with supporting clinical and public health data.
2. Initial evidence review by an external body.
3. Public meetings and expert deliberations to assess readiness and impact.
4. Final vote and recommendation to the Secretary of Health and Human Services.

This thoughtful, federally coordinated process ensured that decisions were made transparently and with input from diverse stakeholders, including patient advocacy groups like ours.
 
Why Federal Oversight Matters
Without a functioning ACHDNC or similar federal body, we risk a return to a fragmented, state-by-state approach to newborn screening. This decentralization leads to inconsistent access, unequal protection, and reduced efficiency in implementation. For families, this means a child born in one state may receive timely diagnosis and treatment—while another child born elsewhere may not be screened at all.
 
This is not hypothetical—it is our reality.
 
Our Fight for Congenital CMV Screening
Congenital cytomegalovirus (CMV) is the most common infectious cause of birth defects and developmental disabilities in the U.S., more common than Zika, spina bifida, and pediatric HIV. Despite this, congenital CMV is not on the RUSP—yet.
 
We at the National CMV Foundation have twice nominated congenital CMV to the ACHDNC for consideration. Each time, we followed the evidence-based process and provided the committee with substantial data. But with the committee now dissolved, that path has been closed.
 
In the absence of federal action, we have worked state by state to push for CMV screening legislation and implementation. While this approach has led to progress in some states, it has also exposed the deep disparities in public health capacity across the U.S. Some states have robust CMV programs with diagnostic follow-up and early intervention; others lack the infrastructure or political will to move forward. This has resulted in uneven care and missed opportunities to protect babies—purely based on geography.
 
What Comes Next?
This is a time for action. The elimination of the ACHDNC must not be the end of evidence-based federal oversight of newborn screening. We call on HRSA and the Department of Health and Human Services to:

1. Restore a national advisory body with similar or expanded authority and transparency.
2. Prioritize the development of a modern, efficient process to review and approve conditions for the RUSP.
3. Ensure strong stakeholder engagement, including voices from affected families and advocacy organizations.

The future of newborn screening in the U.S.—and the lives of thousands of newborns each year—depends on it.
 
How You Can Help

1. Contact your representatives and urge them to advocate for the reinstatement of a federal advisory body on newborn screening.
2. Share your story if your family has been impacted by congenital CMV or gaps in newborn screening.
3. Support state-level efforts to implement CMV screening while we continue to advocate for federal reform.

 
We remain committed to our mission: to educate, inform, and advocate for the prevention and early detection of congenital CMV. The road ahead just got steeper, but we are not backing down.