Contact Your NY Assemblymember RE Educating Pregnant Women on CMV

My husband and I are walking 360 miles across the State of New York to raise awareness of the little-known, yet leading viral cause of birth defects, congenital cytomegalovirus (CMV). You can watch the one-minute video of our Erie Canalway Challenge quest by clicking here.

If you feel inspired to protect unborn children from CMV, please contact your Assembly member and share my following "Memo of Support" (click here to download), or create your own.

Memo of Support
“Elizabeth’s Law”
A7560 (Rosenthal. L.) / S6287A (Mannion, J.)

"Named in memory of our daughter, Elizabeth Saunders, the bill requires education to prevent the #1 birth defects virus" says Lisa Saunders of Baldwinsville, New York.

TITLE: AN ACT to amend the social services law, in relation to requiring child care providers to be trained on the impacts and dangers of congenital cytomegalovirus infection and the treatments and methods of prevention of cytomegalovirus infection; and to amend the public health law, in relation to requiring certain physicians to distribute informational materials concerning cytomegalovirus.

PROBLEM: Congenital Cytomegalovirus (cCMV) is acquired in utero and can result in serious birth defects in the baby. cCMV is the most common congenital (present from birth) infection in the U.S. About 1 in every 200 babies is born with a cCMV infection. Of these babies, around 1 in 5 will have long-term health problems (i) such as hearing and vision loss, microcephaly (small head), developmental and motor delays, and seizures (CDC). (ii)

• In New York, every year an estimated 222 babies are born permanently disabled by cCMV (iii)
• “CMV can be spread by contact with an infected child’s urine or other body fluids. Pregnant women who work with young children, such as day care workers or health care workers, should take steps to prevent infection...(American College of Obstetricians and Gynecologists (ACOG)).
• “Pregnant women with young children at home also are at risk and should take these steps”(ACOG)).(iv)
• “Nearly half of women have been infected with CMV before their first pregnancy. Of women who have never had a CMV infection, it is estimated that 1 to 4% of them will be infected during pregnancy.”(v)
• OSHA recognizes CMV as a “hazard” for childcare workersvi and the American Academy of Pediatrics (AAP) states, “With regard to child-to-staff transmission, studies have shown increased rates of infection with CMV in caregivers/teachers ranging from 8% to 20%.”vii
• Women who have young children in group child care are at an increased risk for CMV.viii
• Racial and ethnic minorities are at higher risk for CMV. (ix)
• “The risk of CMV infection in hospital workers is not greater than it is in others in the community and is probably low because of careful hand washing practices. In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection.”(x)
• cCMV is largely preventable, but 91% of women do not know about the disease or prevention. (xi)

SOLUTION: “You may be able to lessen your risk of getting CMV by reducing contact with saliva and urine from babies and young children. The saliva and urine of children with CMV have high amounts of the virus. You can avoid getting a child’s saliva in your mouth by, for example, not sharing food, utensils, or cups with a child. Also, you should wash your hands after changing diapers.”(xii)

SUPPORT A7560 / S6287A , “Elizabeth’s Law”

Dr. Howard A. Zuckers, New York State Commissioner of Health, stated, "it is imperative that we give women of reproductive age the information they need to make informed decisions for themselves and their families.”(xiii)

To learn more, contact me, Lisa Saunders of New York Stop CMV, at LisaSaunders42@gmail.com.

Supporters of cCMV prevention include: CDC, OSHA, AAP, ACOG and NY Commissioner of Health. The NY Senate/Assembly proclaimed June 2021 Cytomegalovirus Awareness Month. Utah and Idaho have cCMV legislation accompanied by ongoing funding. The NY Senate passed “Elizabeth’s Law” in 2021.

REFERENCES

i https://www.cdc.gov/cmv/awareness-month.html
ii https://www.cdc.gov/cmv/congenital-infection.html
iii In 2019, 221,539 babies were born in NY, with an estimated 1,108 born with cCMV. Using CDC’s averages, 222 of those babies were born permanently disabled from cCMV.
iv https://www.acog.org/womens-health/faqs/reducing-risks-of-birth-defects
v https://www.cdc.gov/cmv/clinical/overview.html
vi https://www.osha.gov/cytomegalovirus/hazards
vii https://nrckids.org/CFOC/Database/7.7.1.1
viii https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046747/
ix https://pubmed.ncbi.nlm.nih.gov/29784513/
x https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm
xi https://digitalcommons.usu.edu/jehdi/vol1/iss2/6/
xii https://www.cdc.gov/cmv/fact-sheets/parents-pregnant-women.html
xiii https://health.ny.gov/commissioner/letters/docs/2018-08.pdf

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Note: Legislators, families and doctors are also working on a revised CMV testing law. In 2018, Senate Bill S2816 was passed (authored by Assemblymember Linda B. Rosenthal). At present, proposed Assembly Bill A08217, also sponsored by Assemblywoman Rosenthal, "Requires a local health department to report positive cytomegalovirus results."

Mother Kelly Smolar Gerne, a mechanical engineer from Brooklyn, NY, wants to expand the CMV testing requirements in New York so more babies can receive early intervention during the critical first three weeks of life. She said, "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. Thankfully, the sole impact of congenital CMV is the loss of hearing in Alexis's left ear. 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 to get Alexis tested and treated early. I want to continue that forward so all babies in the State of New York will have the option for early intervention.

ABOUT LISA SAUNDERS

Lisa Saunders resides in Baldwinsville, New York, with her husband James P. Saunders, a recently retired Pfizer scientist. Lisa is a founding member of New York Stop CMV and volunteers with the National CMV Foundation. In 2015, she was instrumental in helping Connecticut become the second state in the U.S. to enact a law requiring the testing of newborns for CMV if they fail their hearing screen. A graduate of Cornell University, Lisa is a public speaker, an award-winning writer and the author of several books--some with a CMV prevention message.

Lisa was the mother of Elizabeth born severely disabled by congenital cytomegalovirus (CMV) in 1989. Just prior to her pregnancy with Elizabeth, Lisa had a miscarriage but was not tested for CMV or other prenatal infections. Until Elizabeth's birth, Lisa was unaware of CMV and although she was a licensed, in-home child care provider, a church nursery volunteer and the mother of a toddler--all activities that put her at high risk for CMV--she was not educated about the disease and how to reduce her chances of contracting it.

New York Media Coverage

1. Spectrum News, "Couple pushes for law in memory of their daughter" Jessica Houghtaling, Jul. 01, 2021. Includes interview with Dr. Sunil Sood.
2. Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 2021).
3. Music video: "Had I Known, Lyrics and Music by Debra Lynn Alt," produced by Mark De Cracker (June 2021).
4. Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", Steve Buchiere (June 4, 2021).
5. The Citizen: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", Robert Harding (June 2, 2121).
6. Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)", Emma Vallelunga (May 2021) (p.29 image of Stop CMV hand, rock and shirt)
7. The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness", Robert Harding (May 4,2021)
8. The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV", David Wilcox (Mar 31, 2021)
9. 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).
10. Times Herald Record: What every pregnant woman needs to know, Deborah J. Botti