Assembly Health Committee Member: Vote YES on cytomegalovirus (CMV) bills, A3956 and A3074

Dear Assembly Health Committee Members: 

The day after I completed my walk across New York State between Buffalo and Albany leaving Stop CMV rocks along the Erie Canalway Trail (see attached image), I visited your office to drop off information about congenital cytomegalovirus (CMV) and two bills still in committee: A3956 and A3074. I wrote about my visit to Albany and your offices here: "Walked 360 Miles to Complete Erie Canalway Challenge and Stop CMV").

THIS IS WHAT I'D LIKE YOU TO DO:

Vote YES on cytomegalovirus (CMV) bills, A3956 and A3074 

May 10, 2025

I was the mother of Elizabeth born with severe 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 secreting it. 

Congenital CMV “is 3 times more prevalent in black infants” (Moderna, Inc). (Studies on racial differences are below my signature.)

I am hoping you will pass two cytomegalovirus (CMV) bills, A3956 and A3074, which are still in the Health Committee. Congenital CMV causes autism, is the #1 viral cause of birth defects, and is the leading non-heredity cause of hearing loss.

In 2025, Assemblymember Linda B. Rosenthal filed CMV bills  A3956 and A3074, which were referred to the Assembly Health Committee:

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...”

ALSO:  The New York State Assembly passed a resolution declaring June 2025 CMV Awareness Month in the State of New York:

https://nyassembly.gov/leg/?default_fld=&leg_video=&bn=K00668&term=2025&Summary=Y&Actions=Y&Memo=Y&Text=Y 

THE IMPORTANCE OF DIAGNOSING CONGENITAL CMV AT BIRTH:

• "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” (Dr. Megan Pesch, Recommended Uniform (Newborn) Screening Panel (RUSP) Update, National CMV Foundation, 2021).
• “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. The Journal of Pediatrics, 2024).

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: “...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" (Recommended Uniform (Newborn) Screening Panel Update, National CMV Foundation).

Results of the New York State (NYS) "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," 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.”

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/diseases/communicable/cytomegalovirus/fact_sheet.htm):

• 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

Regarding child care providers, I have concerns about child care policy makers and directors not realizing that their workers who are required to provide first aid are supposed to be trained in CMV, not just receive educational materials on it. From OSHA: “Child care workers who are designated as responsible for rendering first aid” (published "Letter of Interpretation," 1992) are covered by OSHA’s Bloodborne Pathogens Standard, which “imposes requirements on employers of workers who may be exposed to blood or other potentially infectious materials such as certain tissues and body fluids.” Two published Letters of Interpretation make it clear that childcare providers, if required to render first aid, are covered by the Bloodborne Pathogens Standard: 

• https://www.osha.gov/laws-regs/standardinterpretations/1992-07-21

• https://www.osha.gov/laws-regs/standardinterpretations/1999-10-21

For more information about the CMV bills, contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov. Thank you in advance for your help!

Sincerely,

Lisa Saunders

LisaSaunders42@gmail.com

Lisa Saunders is the author of Had I Known about CMV: From Shock to Law. She is on  the Advisory Board (as Parent Advocate) for PROACTIVE NYS,  a long-term follow-up study of young children with congenital CMV,  and on the NY DeafBlind Collaborative Expert Advisory Council.  She produces CMV awareness content such as  the flier, "CMV in New York (and OSHA)" and the Pac-B TV interview,“CytoMegaloVirus (CMV) - What Moms Wished They Knew.”  She is the recipient of the National CMV Foundation Spirit of Advocacy Award (2023).

Studies on Racial and Ethnic Differences: 

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.”