December 19, 2025

Early Newborn Screening Saves Lives—and Hearing: Why cCMV Must Be Included

In the recent HHS announcement this week, Dr. Stephanie Haridopolos highlighted how early screening of rare diseases is paramount for the health of newborns and children. Early detection of rare diseases can open a time limited window to lifechanging treatment for newborns. When this window is missed, opportunities for intervention may disappear altogether. She is right and there is another disease that deserves our attention.

One of the most common preventable causes of childhood hearing loss, congenital cytomegalovirus (cCMV), remains largely absent from newborn screening.

Congenital cytomegalovirus is the most common congenital viral infection in the United States, affecting approximately one in every 200 births. It is also the leading non-genetic cause of childhood hearing loss, responsible for roughly one-quarter of permanent cases. While cCMV can lead to vision impairment, developmental and cognitive delays, and cerebral palsy, hearing loss is the most common outcome. Yet, most infants are not screened at birth, even though diagnosis must occur within the first 21 days of life. Too often, children are diagnosed after permanent hearing loss has already occurred.

The American Cochlear Implant (ACI) Alliance views universal screening and early detection of cCMV as a public health imperative. Hearing loss associated with cCMV is often delayed or progressive. This means an infant can pass a standard newborn hearing test but still develop hearing loss months or even years later. Without early identification, parents miss a critical window for informed decision making, early intervention, treatment and audiologic monitoring that can significantly improve a child’s hearing outcomes.

Universal newborn cCMV screening would change that trajectory. Early detection allows clinicians to track at-risk infants, initiate antiviral therapy when appropriate, and guide parents in planning interventions for their child before hearing loss impacts language, speech, or cognitive development. For children whose hearing loss progresses, cochlear implants can be transformative by providing access to sound, supporting spoken language, and enabling full participation in school and social life. But these outcomes depend on timely diagnosis, not delayed discovery.

Congress now has an opportunity to close the gap. The bipartisan Stop CMV Act (H.R. 5435/S.2842) represents a critical step forward. This important legislation would incentivize hospital screening, increase awareness and education, promote research, and improve data collection on cCMV. The ACI Alliance strongly supports universal newborn cCMV screening and the passage of the Stop CMV Act.

About the ACI Alliance:

The ACI Alliance is a non-profit membership organization dedicated to eliminating barriers to cochlear implantation. The Alliance promotes awareness of hearing loss and interventions, sponsors research, and advocates for improved access to cochlear implants for patients of all ages across the U.S. Members include clinicians, scientists, educators, parents, and consumer advocates.