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TO NEW YORK STATE REPRESENTATIVES (see below my signature for separate letter to Congress members about the Stop CMV Act):
Consider cosponsoring the following:
Bill A3956/S5454:"Requires cytomegalovirus [CMV] screening for every newborn..."
Bill A3074/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...”
To learn more about the bills, contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@
Background information about congenital cytomegalovirus (CMV):
I was the mother of Elizabeth (see attached image), born with brain damage from congenital CMV. When pregnant with Elizabeth, 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).
In 2025, I dropped in on some Health Committee members in Albany to tell them that diagnosing congenital CMV early was important, even if the newborn passed their hearing screen because 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" (CDC). (MN and CT already have
1) 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" (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 according to the study, Cost-effectiveness of Universal and Targeted Newborn Screening for Congenital Cytomegalovirus Infection (Soren Gantt, MD, et al., 2016). Report analyzes costs: “AN ACT RELATIVE TO NEWBORN SCREENING FOR CONGENITAL CYTOMEGALOVIRUS” by BerryDunn for MA’s CMV bill).
3) Racial Disparities: Congenital CMV “is 3 times more prevalent in black infants” (Moderna, Inc). Video, “Racial Disparities in Babies with cCMV” (Massachusetts CCMV Coalition).
4) Congenital Cytomegalovirus 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.” NY Dept. of Health created this flier: Congenital Cytomegalovirus (CMV) Testing and Your Baby (Publication #20185) (PDF)
These two New York mothers share the problems associated with not testing all newborns for congenital CMV:
Kara Russell of Penfield, NY, said, “My daughter, Lyla, is the perfect example of why all newborns should be tested for CMV and receive early intervention in their first critical months of life.” Lyla, born in 2018, "passed her newborn hearing screen, so she was never 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 that we learned she had profound unilateral hearing loss -- that she was totally deaf in her left ear. We have no idea how long she was unable to hear accurately.” Kara is the New York National CMV Alliance Co-Chair (nationalcmvnys@gmail.com).
Kristin Schuster of Canandaigua, NY, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old – well after the opportunity had passed to receive antiviral treatment most effective when given between ages zero to six months.”
In 2022, New York State passed “Elizabeth’s Law” (A7560), named in memory of my daughter. It “Requires the provision of informational materials [about cCMV] to child care providers and certain physicians and midwives regarding.” The NYS Dept. of Health created the following informational materials: 1) Protect Your Baby from Cytomegalovirus (CMV) (Publication #20172) (PDF) and 2) Dear Provider Letter and Child Care Staff and Cytomegalovirus (CMV) #5061
(In 2018, New York passed S2816, which requires testing newborns who fail their hearing screen for CMV.)
Organizations Supporting Universal CMV Screening, with their detailed position statements, include:
- American Academy of Audiology
- American Academy of Otolaryngology-Head and Neck Surgery:
- National CMV Foundation
I am happy to provide you with more information.
Thank you!
Lisa Saunders
- Provide funding for hospitals and healthcare providers to test newborns for cCMV
- Support state agencies in setting clear standards for newborn testing
- Create grants to expand cCMV testing, strengthen data collection, and provide education and training
- Boost research at the National Institutes of Health for better screening, prevention, vaccines and treatment
Without universal CMV screening, the diagnosis of congenital CMV “may be overlooked for years, leading to developmental disorders without adequate treatment" (Andriesse et al., 2006).
Kara Russell of Penfield, NY, said, “My daughter, Lyla, is the perfect example of why all newborns should be tested for CMV and receive early intervention in their first critical months of life.” Lyla, born in 2018, "passed her newborn hearing screen, so she was never 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 that we learned she had profound unilateral hearing loss -- that she was totally deaf in her left ear. We have no idea how long she was unable to hear accurately.” Kara is the New York National CMV Alliance Co-Chair (nationalcmvnys@gmail.com).
According to the CDC, "Hearing loss can affect a child's ability to develop communication, language and social skills. The earlier children with hearing loss start getting services, the more likely they are to reach their full potential."
Kristin Schuster of Canandaigua, NY, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old – well after the opportunity had passed to receive antiviral treatment most effective when given between ages zero to six months.” Kristin is referring to “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" (Schleiss).
MN and CT already have universal congenital CMV screening laws. New York State tested all newborns for congenital CMV during the 2023-2024 pilot study. Speaking of the pilot study results, Andrew Handel, MD, a Pediatric Infectious Disease physician at Stony Brook Children's Hospital, said, “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.” The Dept. of Health created the flier, Congenital Cytomegalovirus (CMV) Testing and Your Baby (Publication #20185) (PDF)
Organizations Supporting Universal CMV Screening, with their detailed position statements, include:
- American Academy of Audiology
- American Academy of Otolaryngology-Head and Neck Surgery:
- National CMV Foundation
I am happy to provide you with more information.
Sincerely,
Author of Had I Known about CMV: From Shock to Law; Advisory Board (as Parent Advocate) for PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV; NY DeafBlind Collaborative Expert Advisory Council; and CMV Policy Coalition (National CMV Foundation). CMV content: flier, "CMV in New York (and OSHA," and Pac-B TV interview,“CytoMegaloVirus (CMV) - What Moms Wished They Knew."
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