For more information about the two bills I mention below, and the one already signed by the governor that I don't think is being implemented, please contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guile
We Need Your Help!
We want to ensure that many New York State Senators and Assembly Members sign on to these bills as co-sponsors to demonstrate widespread support.
You can find out who your New York State Senate and State Assembly Member are by clicking on:
Draft two separate emails, one to your NY Senator and the other to your NY Assemblymember
Please feel free to draft your own email or use parts of my email below.
EMAIL SUBJECT:
TO [SENATOR OR Assembly Member] - REQUESTING CO-SPONSORSHIP of Congenital Cytomegalovirus (CMV) Bills A3956 and A3074
[see my email below for a sample]
Calling your State Senator and State Representative:.
Call both your State Senator and State Assemblymember. If your call goes to voicemail, just state what you want. They do seem to listen to messages.
What to say:
Introduce yourself and why you’re calling: “Hi, my name is ___. As your constituent living at [your address], I am asking you to cosponsor CMV bills A3956 and A3074 filed by Assemblymember Linda B. Rosenthal.
Key talking points you may want to include:- This legislation would require mandating universal congenital CMV screening for all newborns to allow for timely diagnosis and interventions.
- Congenital CMV is one of the most common congenital diseases in infants in the United States and the leading viral cause of birth defects and developmental disabilities.
- 91% of women do not know about the disease or prevention during pregnancy.
- Then, if possible, share why this issue is important to you personally and the impact cCMV has had on your life or the life of a loved one. These stories are often the best way to connect with legislators!
Please sponsor 2025 cytomegalovirus (CMV) bills A3956 and A3074; and ensure implementation of A7560 (passed in 2022, but no evidence of compliance).
Congenital CMV can cause autism and is the leading non-heredity cause of hearing loss
Dear Senator Rachel May:
My name is Lisa Saunders, I live in your district, and I would like you to sponsor two bills that relate to congenital cytomegalovirus (CMV), a leading cause of birth defects.
According to the American College of Obstetricians and Gynecologists (ACOG), “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 causes more disabilities than “Down Syndrome, Fetal Alcohol Syndrome, Pediatric HIV/AIDS, Spina Bifida, Toxoplasmosis, and Zika” – National CMV Foundation.
"Children with congenital cytomegalovirus (cCMV) infection are about 2.5 times more likely to be diagnosed with autism spectrum disorder (ASD) than their peers..." (AAP News, 2024). Congenital CMV can also cause deafblindness, cerebral palsy, development delays, and seizures.
CMV is often spread by young children in group care to their caregivers and to mothers who may become pregnant. Few women know how to reduce their chances of contracting CMV. Many rely on the ineffective use of diaper wipes to clean away saliva and urine and kiss their toddlers around the mouth and/or share food and drinks with them. “Almost all the babies that I see who have congenital CMV, there is an older toddler at home who is in daycare” (Dr. Jason Brophy in Ottawa Citizen, 2018).
In 1989, my daughter Elizabeth was born with severe brain damage from congenital CMV. When pregnant with her, I was unaware of CMV, and although I was a licensed, “in-home” child care provider and the mother of a toddler – things that put me at high risk for CMV – I was not informed about CMV prevention. (At 16, Elizabeth died during a seizure.)
In 1990, the Infectious Diseases Society of America and Centers for Disease Control held a workshop and “agreed that certain child-rearing practices, such as the common use of day-care centers...have changed the epidemiology of CMV in the United States and that the next decade may bring an increase in congenital CMV disease in certain groups" (National Library of Medicine, Demmler, 1991).
In 2022, Senator John W. Mannion and Assemblymember Linda B. Rosenthal of New York State passed “Elizabeth’s Law” (S6287C/A7560), named in memory of my daughter. It “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus infection.” But, I have learned through other CMV advocates that the bill is not being implemented. Please help ensure S6287C is enforced, and sponsor:
Assembly Bill A3956: "Requires cytomegalovirus screening for every newborn..." (see below my signature for reasons why diagnosing congenital CMV at birth is important).
Assembly Bill A3074: "Requires reporting of positive cytomegalovirus results." Newborns "SHALL BE REFERRED TO A PEDIATRIC INFECTIOUS DISEASE SPECIALIST TO PERFORM A FULL EXAMINATION BEFORE SUCH NEWBORN REACHES FOUR WEEKS…SUCH EXAMINATION SHALL INCLUDE…
MEASUREMENT OF HEAD CIRCUMFERENCE;
HEAD SONOGRAM;
BLOOD TESTS INCLUDING A COMPLETE BLOOD COUNT AND LIVER FUNCTION TESTS;
EYE EXAM BY AN OPHTHALMOLOGIST; AND
HEARING EVALUATION BY AUDITORY BRAINSTEM RESPONSE.
The importance of diagnosing congenital CMV at birth: “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,” said Andrew Handel, MD, Stony Brook Children's Hospital, Co-Primary Investigator of PROACTIVE NYS.
- CDC and congenital CMV
- National CMV Foundation flyer, "Are you pregnant."
Lisa Saunders, author of "Had I Known about CMV: From Shock to Law.
Lisa 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).
"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, Recommended Uniform (Newborn) Screening Panel (RUSP) Update, National CMV Foundation, 2021).
"...there is good evidence of potential benefit from nonpharmaceutical interventions for children with delayed hearing loss that occurs by 9 months of age. Similarly…there is fair evidence of potential benefit from antiviral therapy for children with hearing loss at birth and from nonpharmaceutical interventions for children with delayed hearing loss occurring between 9 and 24 months of age and for children with CMV-related cognitive deficits...in the United States, several thousand children with congenital CMV could benefit each year from newborn CMV screening, early detection, and interventions" ("Universal newborn screening for congenital CMV infection: what is the evidence of potential benefit?", Cannon et al., 2014).
“The risk of late-onset hearing loss and progressive hearing loss in cCMV-infected infants requires increased surveillance…should include serial evaluations with a pediatric audiologist through 6 years of age and continued audiologic follow-up through the teenage years” (“American Cochlear Implant Alliance Position Statement on Newborn Congenital Cytomegalovirus Screening,”2024).
“One-third of patients with congenital CMV had ocular findings in conjunction with systemic manifestations….While initial screening for retinitis is important, patients with systemic sequelae of congenital CMV are at risk for other eye manifestations and require continued follow-up.” (Incidence of ophthalmic manifestations in congenital cytomegalovirus (CMV), Rossen, et al., BMC, 2025).
2022: New York State passed “Elizabeth’s Law” (S6287C/A7560), named in memory of my daughter. It “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus infection.”
Minnesota, to screen all babies for the virus. (Long-Term Follow-Up study: proactivenys.org. Contact: Andrew Handel, MD, Renaissance School of Medicine at Stony Brook University, andrew.handel@
Eagle Newsroom: “This CMV Awareness Month, mother continues to share her story” (Edwards, A., June 19, 2024).
CNY Central: Baldwinsville mother applauds federal push to protect babies from CMV - CNY Central (Coleman, M.,March 8,2024).
The Citizen: “Bill in Congress aims to boost CMV newborn screening, research” (Robert Harding, Mar 8, 2024).
NBC3: Baldwinsville couple's advocacy inspires legislation for CMV awareness (Coleman, M., Nov. 30, 2023).
Eagle Newsroom: “Baldwinsville couple walking Erie Canal, raising awareness,”(Baldwinsville Messenger, print, Davis, J., Oct. 25, 2023).
Democrat and Chronicle and Lohud,: “New York begins screening newborns for CMV virus that causes birth defects. What to know” (Robinson, D., Oct. 4, 2023)
USA TODAY: This virus is a leading cause birth defects. Why isn't it screened more? (Eduardo Cuevas, 2023, print).
The Citizen: “NY to begin pilot CMV newborn screening program” (Harding, R. Sept. 28, 2023).
NYSenate.gov:“Senator Mannion and Assemblymember Rosenthal Announce Addition of Congenital Cytomegalovirus (CMV) to State's Routine,” Sept. 29, 2023.
The Post-Standard: "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", Emma Vallelunga, Jan.1, 2023, Syracuse.com, Dec. 27, 2022 (Facebook).
CNYCentral.com:”Baldwinsville mom celebrates new law in daughter's name to protect pregnant women, babies,” Coleman, M., Dec.15, 2022 (Facebook).
New York Family: “Elizabeth’s Law for CMV Education Passed in New York”, Kaitlyn Riggio, Dec. 8, 2022.
U.S. News & World Report: "Editorial Roundup: New York", Associated Press, Dec. 7, 2022 (scroll down to: Auburn Citizen, December 1, 2022.Editorial: Elizabeth’s Law poised to help families avoid heartbreak).
The Citizen: “Our View: Elizabeth’s Law poised to help families avoid heartache,”The Citizen Editorial Board, Dec. 1, 2022
The Citizen: "Hochul signs 'Elizabeth's Law,' named for Auburn native's daughter, to raise CMV awareness", Robert Harding, Nov. 29, 2022.
NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” November 28, 2022.
NYSenate.gov: “Senator John W. Mannion’s legislation to protect pregnant women from dangerous viral infection that’s a leading cause of birth defects is signed into law,” November 28, 2022.
The Citizen: "NY lawmakers OK CMV awareness bill named in honor of CNY couple's daughter", Robert Harding, June 1, 2022.
Eagle Newsroom, "Baldwinsville couple advocates for 'Elizabeth's Law' to stop cytomegalovirus: Bill named in memory of their daughter," Dec. 14, 2021.
Spectrum News: "Couple pushes for law in memory of their daughter" (Houghtaling, J., Jul. 01, 2021). Includes an interview with Dr. Sunil Sood.
Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York" (Buchiere, S., Jun 11, 2021).
Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", (Buchiere, S.,June 4, 2021).
The Citizen: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", (Harding, R., June 2, 2021).
Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)", (Vallelunga, E., May 2021)
The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV", (Wilcox, D., Mar 31, 2021)
Times Herald Record: “What every pregnant woman needs to know” (Botti, D., 2009)
