I want to thank Congressman Brandon Williams for becoming a cosponsor of the Stop CMV Act of 2024 (HR7542), bipartisan legislation that will authorize new funding to incentivize hospitals and other health care entities to increase screening of newborns for congenital cytomegalovirus (CMV). According to the Centers for Disease Control, about one in five infants with congenital CMV will have birth defects or long-term health issues, such as hearing or vision loss, seizures, or developmental and motor delay.
In a press release, Congressman Williams stated: "Nearly 90% of infants born with congenital CMV appear perfectly healthy at birth, and it can take more than two years for associated health problems to become visible. This underscores the importance of early screening, both to come alongside caregivers who want what’s best for their children, and to contribute to ongoing research efforts that will help us better understand this disease as we seek to treat it” (Rep. Williams Announces Cosponsorship of Stop CMV Act of 2024, September 12, 2024).
In 2022, New York passed "Elizabeth's Law," named in memory of our daughter. Elizabeth was born with a severely damaged brain from congenital CMV in 1989 and died at 16 during a seizure. Elizabeth's Law (S6287C), sponsored by Senator John Mannion, “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus infection.”
Ever since our daughter's death in 2016, I've focused my energies on trying to improve CMV prevention. " At least one-third of the pregnant women in the US are high risk; that is, they have daily household or occupational contact with children less than 3 years old" (Adler, 2011). Unbeknownst to me, I was at high risk for CMV when pregnant because I was an "in-home" licensed child care provider, a church nursery volunteer, and the mother of a toddler.
My husband Jim and I are currently walking across New York State between Buffalo and Albany on the Erie Canalway Trail leaving behind "Stop CMV" rocks with prevention information on the back as a way to raise awareness and to honor the memory of children who have died from congenital CMV.
To learn more about CMV laws and protocols in New York and beyond, click on this flier I created: CMV - New York Laws and OSHA
Sincerely,
Lisa Saunders
- Author, Had I Known about CMV: From Shock to Law
- New York DeafBlind Collaborative Expert Advisory Council member
- Advisory Board as a Parent Advocate for PROACTIVE NYS, an NIH-funded long-term follow-up study of young children with congenital CMV