New York Lawmakers Proclaim June 2022 Cytomegalovirus (CMV) Awareness Month
Awaiting Governor Kathy Hochul to Sign or Veto "Elizabeth's Law" (A7560B/ S6287C) to
Educate Pregnant Women and Child Care Providers on CMV, #1 Birth Defects Virus
Photograph of Elizabeth Saunders (1989-2006), of "Elizabeth's Law", surrounded by 222 silver cytomegalovirus (CMV) awareness rocks, representing the estimated number of children in New York disabled by congenital CMV each each year, at a June 2021 Cytomegalovirus Awareness Month event in Lyons, New York (photograph by Lisa Saunders).
Albany, New York--On June 1, the New York Assembly adopted Resolution No. 1049, proclaiming June 2022 as Cytomegalovirus Awareness Month in the State of New York. Sponsored by Assemblymember Linda B. Rosenthal with many co-sponsors, it states in part: "In 2011, Congress passed a resolution naming June as National CMV Awareness Month; CDC takes this opportunity to increase awareness of congenital cytomegalovirus (CMV) among healthcare providers, pregnant women, and parents...CMV is the most common viral infection transmitted from a pregnant woman to her unborn child, and the leading non-genetic cause of deafness in children...One in 200 children are born with congenital CMV and roughly 1 in 5 of those babies will have long-term health problems such as hearing loss, microcephaly, intellectual deficits and vision abnormalities...CMV is also transmitted by contact with saliva and urine, often from diaper-wearing children to adults; pregnant women often get CMV from their toddlers, especially toddlers in day care, as nearly one in three children are infected by age five...It is difficult for mothers to protect themselves from a virus carried by the children they care for, especially if they are unaware of the virus itself; less than one in five pregnant women are aware of cytomegalovirus...Few women are warned about this infection, and according to a federal survey, less than half of obstetrician-gynecologists tell pregnant patients how to avoid CMV...It is imperative that women are educated about the virus itself and simple preventative measures, such as not sharing food with toddlers, and washing one's hands after changing infants and toddlers diapers..."
On May 24, the Assembly passed "Elizabeth's Law", A7560B (Rosenthal, L) /S6287C (Mannion, J). After the bill was introduced, Assemblymember Rosenthal explained her vote. She said, "This legislation is named in memory of Elizabeth Ann Saunders who died from a seizure at the young age of 16 in 2006. Elizabeth was born with brain damage from a congenital cytomegalovirus infection--a little known disease that can have devastating impacts on newborns. The disease is commonly transmitted through bodily fluids of young children, and while most adults can go on to live healthy lives with CMV and show no symptoms, for a pregnant person, the infection can cause permanent disabilities for their newborn, including microcephaly and hearing loss. Nationwide, up to 40,000 infants are born with CMV. Each year, approximately 400 die from this infection. Elizabeth's mother Lisa Saunders worked as a child care provider when she contracted CMV while she was pregnant and asked the same question that so many families affected by CMV ask: 'Why was I never told about this?' Since Elizabeth's passing, Lisa Saunders has made it her mission to help stop the spread of CMV nationwide. Under the legislation we are passing today, child care providers and pregnant people visiting an OB/GYN will be given the info necessary to learn about CMV and the simple steps they can take to prevent transmission. I want to thank Lisa Saunders, Dr. Sallie Permar at Weill Cornell, Dr. Sunil Sood of Cohen Children's Medical Center and the entire STOP CMV coalition for their efforts in helping me to move this bill forward. I'm proud to cast my vote in the affirmative" (The public can watch the proceedings by clicking here: A07560B).
According to Robert Harding, politics reporter for The Citizen, "The state Senate passed Mannion's bill again in early May, but lawmakers worked on finalizing an agreement that could clear both houses. The Senate passed the amended bill by a 61-0 vote on May 23. The next day, it was approved by the state Assembly in a near-unanimous 147-2 vote. It will be sent to Gov. Kathy Hochul for her signature. Her office has not indicated whether she will sign or veto the measure" (NY lawmakers OK CMV awareness bill named in honor of CNY couple's daughter, Auburn Citizen, 2022).
When “Elizabeth’s Law” was first passed by the New York Senate in 2021, Senator John Mannion stated, "My legislation will provide for training and increased awareness so expecting moms have the information they need to make informed decisions to keep themselves and their babies safe. I thank and commend Lisa and Jim Saunders, who have turned their heartache into potentially life-saving action" ("NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", The Citizen, Harding, R., 2021).
Lisa Saunders of Baldwinsville learned about cytomegalovirus (CMV) the hard way. Her daughter Elizabeth was born with a severely damaged brain from the virus in 1989. Saunders was at higher risk for contracting CMV because she had and worked with toddlers, who are often excreting the virus. “When I was pregnant with Elizabeth, I ran a licensed child care center in my home, volunteered in our church nursery and a toddler— all activities that put my pregnancy at higher risk for CMV — yet I never heard of it. I completed hours of training to get my in-home daycare license, but nowhere was I told of my occupational hazard for CMV until after Elizabeth was born. Like me, many women caring for toddlers (their own or professionally) admit to sharing food with them and using diaper wipes to clean up urine or saliva to save time. Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). Elizabeth had cerebral palsy, developmental delays, epilepsy, and vision and hearing loss. She died at Nyack Hospital after a seizure at the age of 16 (Lohud, 2006)."
When Lisa Saunders participated in an online New York State Legislative Women's Caucus meeting in March 2022, Assemblymember Linda B. Rosenthal told the group that when she read the 2016 New York Times article about CMV, she thought something had to be done. She sponsored the 2018 CMV law that helps diagnose children with congenital CMV by requiring “testing for cytomegalovirus of newborns with hearing impairments" (Assembly Bill A587C).
Kelly Smolar Gerne, a mechanical engineer from Brooklyn told Lisa Saunders, "My daughter Alexis was born in August 2020 with congenital CMV. With the help of Northwell, Dr. Sood and Nurse Stellato, Alexis is thriving because she was diagnosed and treated early following a failed newborn hearing test. While I am angry about the lack of CMV education prior and during my pregnancy, the CMV testing law passed in 2018 meant our family was the recipient of those who had fought before us. I want to continue that forward so all babies in the State of New York will have the option for early intervention."
Brandi Hurtubise of Buffalo told the National CMV Foundation on Facebook about her second child Samantha, born in 2016 with congenital CMV. "No one told me I shouldn't share drinks or food with my toddler while I was pregnant with [Samantha]. Or that I needed to wash my hands after every single diaper change. That I needed to be cautious of his saliva and urine because it could be carrying a virus that would harm my unborn baby. I didn't know because CMV isn't commonly talked about or educated on; even though it is incredibly common."
Gail J. Demmler-Harrison, MD is delighted by New York's efforts at CMV education. She sent Assemblymember Rosenthal's office a letter of support for "Elizabeth's Law" stating, “Approximately 1-4% of all pregnant women will experience a primary CMV infection during their pregnancy. If you work in a child care setting, the risk increases to approximately 10%. If you have a toddler at home who is actively infected with CMV and shedding CMV in their saliva or urine, the risk is even higher, approaching 50% in some studies." Her letter concludes: "When mothers and fathers sit across from me in my CMV clinic holding their little baby and ask, 'Why weren't we warned about CMV,' it's heart-breaking. All I can say is, 'I don’t know, I’ve been trying for over 30 years to educate pregnant women about CMV.'”--Gail J. Demmler-Harrison MD.
Available CMV informational materials include:
- CDC's CMV fliers in English and Spanish.
- The National CMV Foundation's fliers/posters include: “ARE YOU PREGNANT”.
- For child care workers: CMV Training Module created by the University of Connecticut.
- Training resources for child care employers/policy makers includes, “Occupational Exposure to Cytomegalovirus (CMV): Preventing Exposure in Child Care and Educational Settings, Including OSHA Advisories (Cornell University, ILR School, Workplace Health and Safety Program, 2019, Nellie Brown, MS, CIH)
Media Coverage in New York Regarding CMV Legislation
- 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" by Jessica Houghtaling (Jul. 01, 2021). Includes interview with Dr. Sunil Sood.
Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 2021).
Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", Steve Buchiere (June 4, 2021).
The Citizen: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", Robert Harding (June 2, 2021).
The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness", Robert Harding (May 4,2021)
The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV", David Wilcox (Mar 31, 2021)
- WHEN SAUNDERS HELPED CONNECTICUT PASS A CMV TESTING LAW: Cornell Alumni Magazine: "In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action," Alexandra Bond (Sept/Oct 2015).
Contact By Mail:
The Honorable Kathy Hochul
Governor of New York State
NYS State Capitol Building
Albany, NY 12224
Lisa Saunders letter to the governor:
Dear Honorable Kathy Hochul:
I strongly support A7560B/S6287C,named "Elizabeth's Law" in memory of my daughter. The bill requires "the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus [CMV} infection and the treatments and methods of prevention of cytomegalovirus infection".
The CDC has already created excellent congenital CMV materials in English and Spanish at: https://www.cdc.gov/cmv/resources/pregnant-women-parents.html
My daughter Elizabeth was born with a severely damaged brain from congenital CMV in 1989 and died at Nyack Hospital after a seizure in 2006. When I was pregnant with Elizabeth, I ran a licensed child care center in my home and cared for a toddler of my own--activities that put my pregnancy at risk for CMV yet I never heard of it--most women still haven't. I completed hours of training to get my in-home daycare license, but nowhere was I told of my occupational hazard for CMV until after Elizabeth was born. Like me, many women caring for toddlers (their own or professionally) admit to using diaper wipes to clean up urine or saliva to save time. Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). Elizabeth had cerebral palsy, developmental delays, epilepsy, and vision and hearing loss.
You should be aware that according to studies, there are "Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection" (2018). You can learn more by watching this short video: "CMV Racial Disparities" at: https://fb.watch/ddTMqFlqG-/
The importance of Elizabeth’s Law is evident in the data: with more than 3 in every 5 children under the age of 5 being cared for in a childcare facility, and 30 to 40% of preschoolers in daycare excreting CMV in their saliva and/or urine, and up to 70% of children ages 1 to 3 years in group care settings excreting the virus, I strongly urge the passage of “Elizabeth’s Law.” CMV is recognized as a workplace hazard by the Occupational Safety and Health Administration (OSHA), however, in 2016, only 18.5% of licensed “in-home” daycare providers surveyed had heard of CMV. This level of awareness is insufficient in protecting workers, especially when OSHA acknowledges that childcare workers are at a greater risk of infection.
Increased awareness and education about CMV enhances the health and safety of expecting mothers and their unborn children, while empowering the workforce to make more informed decisions about the occupational hazards of CMV and its prevention.
Thank you in advance for your help.
[my home address and phone #]
Baldwinsville, NY 13027
Music Video "Had I known (about CMV)"