Congenital CMV is a leading cause of birth defects and the leading non-heredity cause of hearing loss. Congenital CMV can cause autism, hearing and vision loss, and cerebral palsy.
I was the mother of Elizabeth, born with severe brain damage from congenital CMV. When pregnant with her, I was unaware of CMV and how to prevent it – namely by carefully handling the saliva and urine of toddlers who, though otherwise healthy, may be excreting it.
In 2025, Assemblymember Linda B. Rosenthal filed CMV bills A3956 and A3074, which are currently in the Health Committee:
Assembly Bill A3956 (same as S05454-A): "Requires cytomegalovirus screening for every newborn..."
Assembly Bill A3074 (same as S7662): "Requires reporting of positive cytomegalovirus results." Newborns "SHALL BE REFERRED TO A PEDIATRIC INFECTIOUS DISEASE SPECIALIST...BEFORE...FOUR WEEKS…EXAMINATION SHALL INCLUDE…EYE EXAM BY AN OPHTHALMOLOGIST; AND HEARING...”
I went to Albany in April 2025 and met with Assemblymember Rosenthal and some of the Health Committee members. I told them that diagnosing congenital CMV early was important, especially if the newborn passed their hearing screen as the hearing loss can be progressive. According to the CDC, "Hearing loss can affect a child’s ability to develop speech, language, and social skills. The earlier that children with hearing loss start getting services, the more likely they are to reach their full potential." Without universal CMV screening, "diagnosis [of cCMV] may be overlooked for years, leading to developmental disorders without adequate treatment" (Andriesse et al., 2006).
Some of the committee members mentioned they wanted more information on 1) how testing all newborns will save money in the long run, 2) about the antiviral that can be offered to newborns, and 3) about racial disparities. My answers below:
1) Savings: It was noted that "savings of up to $37.97 per newborn screened were estimated" when all newborns are tested for congenital CMV according to the study, Cost-effectiveness of Universal and Targeted Newborn Screening for Congenital Cytomegalovirus Infection (Soren Gantt, MD, et al., 2016). "Universal screening offers larger net savings and the greatest opportunity to provide directed care."
2) Antiviral: “antiviral therapy with a 6-month course of valganciclovir, if implemented by 30 days of age, improved audiologic and neurodevelopmental outcomes for moderately-to-severely symptomatic infants with confirmed cCMV" (Evolving Concepts in Care for Congenital Cytomegalovirus (cCMV) Infection: Better Outcomes for More Babies!. Schleiss, Mark R., 2024,The Journal of Pediatrics).
3) Racial Disparities: Congenital CMV “is 3 times more prevalent in black infants” (Moderna, Inc, Facebook). See video, “Racial Disparities in Babies with cCMV” by the Massachusetts CCMV Coalition (Facebook ).
Examples of New York families who would have benefited from universal congenital CMV testing:
- Kristin Schuster of Canandaigua, mom to Autumn born in 2015 (Autumn failed her hearing screen, but this was before the 2018 targeted CMV testing law Assemblymember Rosenthal got passed), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old – well after the opportunity had passed to receive treatment most effective when given between ages zero to six months."
- Kara Russell of Penfield: "We didn’t discover that Lyla has congenital CMV until she was five. Her newborn dried bloodspot was pulled and tested due to the discovery of a hearing loss. Lyla was born full term and otherwise healthy, passing her newborn hearing screen so was not tested for CMV. Therefore, she never received the recommended regular hearing checks to catch the possibility of a progressive hearing loss. It wasn't until Lyla's five-year well check in summer 2023 that we learned she was completely deaf in her left ear. We have no idea how long she was unable to hear accurately, even though she had been receiving speech services since age four as well as occupational therapy for coordination and balance delays.” Kara Russell is the New York National CMV Alliance Co-Chair. Contact: nationalcmvnys@gmail.com
I collaborate with the Massachusetts cCMV Coalition which is seeking to pass CMV bill S.1573. They alerted me to the detailed 2023 Massachusetts report, AN ACT RELATIVE TO NEWBORN SCREENING FOR CONGENITAL CYTOMEGALOVIRUS, which provides an analysis of the costs of the Massachusetts CMV bill. Prepared for the Massachusetts Center for Health Information and Analysis, "This study by BerryDunn focuses on the provisions of the bill pertaining to insurance coverage of the screening test, the efficacy of universal screening in achieving the intended purpose of the sponsors, and the impact on commercial insurance premiums...does not address potential long-term savings or costs to the Commonwealth in education, social services, or other public-sector expenses associated with changes in disability status and functional ability over the lifespan of an individual with cCMV. " (see: https://www.chiamass.
Minnesota and Connecticut have already passed laws to test every newborn for congenital CMV in order to improve health outcomes and to save money in the long run.
In 2018, New York passed S2816, which requires testing newborns who fail their hearing screen for CMV.
In 2022, the governor passed “Elizabeth’s Law” (A7560), named in memory of my daughter. It “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding...congenital cytomegalovirus infection." The New York State Dept. of Health created the following CMV informational materials (health.ny.gov/
- Protect Your Baby from Cytomegalovirus (CMV) (Publication #20172) (PDF)
- Congenital Cytomegalovirus (CMV) Testing and Your Baby (Publication #20185) (PDF)
- For Child Care Providers (from
ocfs.ny.gov/programs/ childcare/letters.php) - Dear Provider Letter and Child Care Staff and Cytomegalovirus (CMV) #5061
In 2023-2024: There was a New York State pilot study testing all newborns for "Congenital Cytomegalovirus (cCMV) Infection." The study yielded these initial results: Of the 210,100 babies born in NYS between 10/2023 – 9/2024, about 275 or so had "convincing evidence of congenital CMV," according to Andrew Handel, MD, Stony Brook Children's Hospital, Co-Primary Investigator of PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV. “We've seen cases of missed clinically apparent cCMV during the NYS universal screening program. There have been some infants with features of cCMV that went unrecognized until the universal screen returned positive.
For more information about the CMV bills, contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@
Sincerely,
1) Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection (Fowler et. al, 2018); “Significant racial and ethnic differences exist in the prevalence of cCMV, even after adjusting for socioeconomic status and maternal age. Although once infected, the newborn disease and rates of hearing loss in infants are similar with respect to race and ethnicity.”
2) Geographic Disparities in Cytomegalovirus Infection During Pregnancy (Lantos et. al, 2017). “We found a high prevalence of CMV seropositivity in urban low-income neighborhoods among pregnant women, particularly among racial and ethnic minorities.”
3) Updated National and State-Specific Prevalence of Congenital Cytomegalovirus Infection, United States, 2018-2022 (Lutz et al., 2024). It looks at congenital CMV (cCMV) rates by racial/ethnic group and geography and includes some colorful US maps that drive home the disparities. It concludes: “States with larger proportions of racial and ethnic minorities had higher estimated prevalence of cCMV infection compared to states with larger proportions of White persons.”
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