Please cosponsor Assembly Bill A3956 and Assembly Bill A3074:
Dear Assemblyman Magnarelli:
Thank you again for cosponsoring Assembly Bill A7560B, named "Elizabeth's Law" in memory of my daughter, which passed in 2022. It requires providing congenital cytomegalovirus (CMV) educational materials to pregnant women and childcare providers. As you may recall, I was the mother of Elizabeth (see attached) born with brain damage from congenital CMV. When pregnant, 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 the virus in their bodily fluids.
The American College of Obstetricians and Gynecologists states: “CMV can be passed from a pregnant person to their fetus. About one in 200 infants are born with a congenital CMV infection; of those, about one in five will have birth defects or other long-term health problems” (ACOG, 2024). Congenital CMV can cause autism (AAP News), is the #1 viral cause of birth defects, and is the leading non-heredity cause of hearing loss (CDC). CMV transmission between children is common in childcare centers. Individuals who work in childcare have an occupational risk for CMV (OSHA). “Knowledge and awareness of congenital cytomegalovirus among women is low [22%]” (Jeon et al., 2006).
In 2018, New York passed S2816, which requires testing newborns who fail their hearing screen for CMV, but it’s important to diagnose all cases at birth because cases are missed. "Babies with CMV who are caught early can access early treatment – which includes anything from anti-viral medication, to early intervention services, to long term hearing and vision monitoring. Since 90% of symptomatic babies are missed at birth, universal screening would help identify both symptomatic babies who may benefit from medication, and also asymptomatic babies who are at higher risk of hearing loss in childhood"--Dr. Megan Pesch, National CMV Foundation (2021). MN and CT have universal screening laws.
In 2025, New York Assemblymember Linda B. Rosenthal filed two CMV bills (contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov):
1. Assembly Bill A3956: "Requires cytomegalovirus screening for every newborn..."
2. Assembly Bill A3074: "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...”
In April 2025, I met with some Health Committee members in Albany to educate them on the importance of diagnosing congenital CMV at birth because a newborn may pass their hearing test, but then experience a progressive hearing loss. "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" (CDC). Without universal CMV screening, diagnosing congenital CMV “may be overlooked for years, leading to developmental disorders without adequate treatment" (Andriesse et al., 2006). Health committee members wanted the following information:
1) Antiviral treatment: “valganciclovir, if implemented by 30 days of age, improved audiologic and neurodevelopmental outcomes for moderately-to-severely symptomatic infants" (Schleiss, M., The Journal of Pediatrics, 2024).
2) Savings: "savings of up to $37.97 per newborn screened were estimated" when all newborns are tested for congenital CMV” (Gantt, et al., JAMA Pediatrics, 2016). The report, “AN ACT RELATIVE TO NEWBORN SCREENING FOR CONGENITAL CYTOMEGALOVIRUS” (by BerryDunn for MA’s CMV bill), analyzes costs.
3) Racial Disparities: Congenital CMV “is 3 times more prevalent in black infants” (Moderna, Inc). See short video, “Racial Disparities in Babies with cCMV” (Massachusetts CCMV Coalition).
4) Congenital Cytomegalovirus (cCMV) Infection pilot study: Of the 210,100 babies born in NYS between 10/2023 – 9/2024, about 275 or so had "convincing evidence of congenital CMV," said 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.”
In 2022, New York State 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 NYS Dept. of Health created the following informational materials:
· Protect Your Baby from Cytomegalovirus (CMV) (Publication #20172) (PDF)
· Congenital Cytomegalovirus (CMV) Testing and Your Baby (Publication #20185) (PDF)
· For Child Care Providers: Dear Provider Letter and Child Care Staff and Cytomegalovirus (CMV) #5061
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
For more information about the CMV bills, contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@
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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