Save Babies from Brain Damage--Ask Reps to Pass CMV Education Law

If you have a minute, you can help protect the brain development of unborn children in New York by contacting your assembly member and asking them to pass “Elizabeth’s Law”, A7560 (Rosenthal. L.) / S6287A (Mannion, J.).

When you contact your assembly member (find your representative by clicking here, then enter your address), your representative's office assistant will read your email, letter, or listen to your phone message and log in your support of the bill (you will often get their answering machine--that's fine just to leave a message).

PLAN TO CALL? SAY SOMETHING LIKE:

"My name is X and I live in your district on X Street, X Town. I want you to consider co-sponsoring "Elizabeth's Law", Assembly Bill 7560, named in memory of a girl born with a severely damaged brain to the mother of a toddler and child care provider uneducated about her risk for cytomegalovirus or CMV. Congenital CMV is the leading viral cause of birth defects such as hearing loss and brain damage, yet most women don't know how to reduce their chances of getting it such as not sharing food with toddlers, and washing one's hands after picking up toys mouthed by them. According to studies, women with a toddler in group care, caregivers, early childhood teachers and those in poor communities are at increased risk for contracting CMV. You can learn about the virus on the CDC's website at: cdc.gov/cmv. If you want to help families in your district right now, the CDC offers downloadable fliers on CMV prevention in English and Spanish.

Emailing or writing a letter?

Subject: I live in your district. Please support "Elizabeth's Law", Assembly Bill A7560 to protect newborns from #1 birth defects virus, Cytomegalovirus (CMV)

[date, 2022]

Dear Assemblymember ______,

My name is X and I live in your district on X Street in X Town. I would like you to consider co-sponsoring “Elizabeth’s Law”, A7560 (Rosenthal. L.) / S6287A (Mannion, J.).

The bill was passed by the Senate last year (see "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", The Citizen, 2021).

Elizabeth's Law was named in memory of a girl born with a severely damaged brain to the mother of a toddler and child care provider who was uneducated about her risk for cytomegalovirus, or CMV. Elizabeth died in Nyack Hospital at the age of 16 from a seizure in 2006.

Assembly Bill A7560 aims to prevent babies from being born disabled by cytomegalovirus (CMV). “CMV is the most common infectious cause of birth defects in the United States” says the CDC. Congenital Cytomegalovirus (cCMV) is acquired in utero and can result in serious birth defects in the baby. 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 such as hearing and vision loss, microcephaly (small head), developmental and motor delays, and seizures. Learn more at: CDC.Gov/CMV.

The New York State Assembly proclaimed June 2021 Cytomegalovirus Awareness Month, stating, " 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 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..."

When Elizabeth's mother, Lisa Saunders, was pregnant with Elizabeth in 1989, she was a child care provider, church nursery volunteer and the mother of a toddler--all things that put her at increased risk for contracting CMV, yet she was not advised about prevention. More than 30 years later, most pregnant women are still unaware of CMV even though more children will have disabilities due to congenital CMV than other well-known conditions including Down Syndrome, Fetal Alcohol Syndrome, Pediatric HIV/AIDS, Spina Bifida, Toxoplasmosis, and Zika (National CMV Foundation).

CMV prevention education is not "part of standard prenatal care” (Washington Post, 2021) yet education is proven to help prevent CMV. Pregnant mothers “offered hygiene tips were much less likely to get CMV (5.9 percent) than those not given information on prevention (41.7 percent)” (New York Times, 2016).

The United States Congress "Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children" (Congress.gov, 2011). Utah and Idaho passed CMV education laws to ensure their residents of childbearing age know how to protect their pregnancies from CMV. You can start helping families now by sharing the CDC's English or Spanish fliers on CMV.

Thank you in advance for your help.

Sincerely,

[name, address, phone #]

###

P.S.

Dear Reader,

With the Assembly back in session, I am reaching out again to the Assembly Children and Family Committee in hopes of getting them to vote on "Elizabeth's Law", A7560 (Rosenthal. L.) / S6287A (Mannion, J.) . I am leaving materials with some of those committee members who have an office along the Erie Canalway Trail as we continue our 360-mile walk across upstate, leaving behind #Stop CMV rocks to raise awareness. We have now walked 125 miles--so over a 1/3 of the trail! For fun, I made a 1-minute trailer of our walk while urging the viewer to support "Elizabeth's Law" :
Erie Canal Trail Challenge to Stop CMV Birth Defects. Pass "Elizabeth's Law" - A7560/ S6287A

If you are interested in learning more, the following is a list of 10 reasons I give legislators as to why we need a CMV Education Bill:

Elizabeth’s Law”--Education on Cytomegalovirus (CMV)

A7560 (Rosenthal. L.) / S6287A (Mannion, J.)

Named in memory of Elizabeth Saunders, born with a severely damage brain, to the mother of a toddler and licensed child care provider uneducated about CMV. Elizabeth died at 16 in Nyack hospital after a seizure.

In 2021, NY Senate passed Assembly Bill A7560 (Rosenthal. L.) / Senate Bill S6287A (Mannion, J.)

In 2022, the bill is sitting with the Assembly Children and Family Committee.

Assembly Bill A7560 is AN ACT to:

• Require “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”

• “The commissioner shall distribute such cytomegalovirus informational materials to licensed physicians who practice obstetric and/or gynecology in this state. Such physicians shall provide such informational material to each pregnant patient during such patient's first appointment with such physician."

WHY IS A CMV PREVENTION EDUCATION LAW NEEDED?

1. “CMV is the most common infectious cause of birth defects in the United States” says the CDC. Congenital (present at birth) CMV can cause hearing and vision loss, brain damage, cerebral palsy and seizures."
2. Women who work with toddlers or have one in group care are at greater risk. “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). An infectious disease specialist stated, “’Almost all the babies that I see who have congenital CMV, there is an older toddler at home who is in daycare’” (Ottawa Citizen, 2018). “CMV is more common among socially disadvantaged groups, and geographically clusters in poor communities" (Lantos, et al., 2017).
3. There is a lack of awareness of congenital CMV and its dangers—a recent study shows that 91% of women do not know about CMV or prevention (Doutre et al., 2016).
4. CMV prevention education is not part of “standard prenatal care” (Washington Post, 2021.)
5. Education is proven to help prevent CMV. Pregnant mothers “offered hygiene tips were much less likely to get CMV (5.9 percent) than those not given information on prevention (41.7 percent)” (New York Times, 2016).
6. The New York State Assembly proclaimed June 2021 Cytomegalovirus Awareness Month, stating, " 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 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..."
7. United States Congress - "Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children" (Congress.gov, 2011). Utah and Idaho passed CMV education laws.
8. Prevention can save tax dollars spent on educating and treating children disabled by CMV. CDC has CMV education fliers in English and Spanish, which can be shared with child care providers when trained in infection control, and with pregnant women at their first prenatal visit when they learn tips such as refraining from alcohol.
9. Workers Rights: OSHA recognizes CMV as a “hazard” for childcare workers and U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970). New York's current childcare worker training law does not require specific education on CMV.
10. American Academy of Pediatrics works to protect caregivers and teachers: “child care staff members should receive counseling in regard to the risks of acquiring CMV from their primary health care provider. However, it is also important for the child care center director to inform infant caregivers/teachers of the increased risk of exposure to CMV during pregnancy” (“Staff Education and Policies on Cytomegalovirus (CMV),” AAP et al., 2017).

###

In summary: "Perhaps no single cause of birth defects and developmental disabilities in the United States currently provides greater opportunity for improved outcomes in more children than congenital CMV ( Washing our hands of the congenital cytomegalovirus disease epidemic, Cannon and Davis, 2005).

The public cares about this bill--and so does the media: