I've been working on a women's rights issue for decades, but only recently has it been getting the major publicity it deserves. In USA Today, in the front page article, "This virus is a leading cause birth defects. Why isn't it screened more?" the reporter included the following information about how we're trying to build on the women's rights movement that started in Seneca Falls, NY:
"Saunders, whose daughter contracted the disease in the 80s, has continued to advocate for CMV awareness as a women’s rights issue. In the last three years, she and her husband Jim, 65, have begun walking the entire Erie Canalway that runs across New York. They hope to complete it by the canal's bicentennial anniversary, in 2025. The 363-mile waterway allowed American commerce to expand. It also passes near several historic sites from the suffragist movement, including Seneca Falls, the site of the pioneering 1848 women’s rights convention. Saunders said she hopes that women find out about CMV before they’re pregnant, during their childbearing years. She wants prevention and newborn screening for the infection to become the standard of care, and, more than anything, she hopes knowledge about CMV to be commonplace."
Congress established the Erie Canalway National Heritage Corridor in 2000 because it “facilitated the movement of ideas …like…women's rights…across upstate New York to the rest of the country”(106th Congress). We are leaving #Stop CMV rocks along the Erie Canalway Trail to comply with Congress' recommendation that "more effort be taken to counsel women of childbearing age of the effect this virus can have on their children" (112th Congress, 2011).
Our daughter Elizabeth was born with brain damage in 1989 because I contracted CMV just prior to or during my pregnancy. I might have prevented her disabilities had I known to lessen my "risk of getting CMV by reducing contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). In 2022, “Elizabeth’s Law,” named in memory of our daughter, was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women.
Many women across the country have already signed the "Declaration of Women's CMV Rights and Sentiments," which is based on the 1848 Women's Rights "Declaration of Sentiments" signed in Seneca Falls.
The following are some of the reasons women are not routinely educated about CMV:
1) Doctors don’t want to frighten, worry or burden” patients: New York Times: "Guidelines from ACOG suggest that pregnant women will find CMV prevention 'impractical and burdensome,' especially if they are told not to kiss their toddlers on the mouth — a possible route of transmission.” (Saint Louis, 2016).2) Fearmongering: "Nearly half of surveyed healthcare professionals (HCPs) hesitate to discuss CMV, citing concerns of fearmongering among their patients."(Panther, MD, "Moderna Addresses Awareness Gap, Builds Community Trust To Boost CMV Trial Recruitment," Sept. 20,2023)3) Medical training downplays the dangers. Pediatrician Megan Pesch, M.D., of the University of Michigan’s C.S. Mott Children’s Hospital, whose third daughter was born with congenital CMV and a progressive hearing loss, said, "I went back and looked at my notes at what I’d learned in residency and medical school, and what we learned was so rudimentary and basic...I waver between feeling guilty and feeling furious. I have spent — how many years of my life in developmental pediatrics? — how could I not have known?”(Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)4) Caregivers/Teachers at greater risk, but there are no federal laws governing CMV education policies: Although U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970), the Department of Labor states, "Education and training requirements vary by setting, state, and employer."5)"Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005).
There is still a lot to do to raise awareness among women of childbearing age so they can know about CMV before getting pregnant. The song, "Had I known (about CMV)," by Debra Lynn Alt, expresses how many of us mothers feel.
Perhaps you are able to help raise awareness of CMV through sharing this message?
And/or, perhaps you can help find a Republican U.S. Senator to co-sponsor "Stop CMV Act of 2023"? The USA Today article announced, "In June, U.S. Sen. Richard Blumenthal, D-Conn., announced he would introduce the Stop CMV Act of 2023 to incentivize hospitals and health care providers to screen for CMV in newborns’ first three weeks. The bill has yet to be formally introduced in Congress. Blumenthal is seeking a Republican co-sponsor. 'Congenital CMV is a major public health challenge and, unfortunately, parents are almost totally unaware of it and providers aren’t able to detect it as often as they should,' Blumenthal said in a statement" (USA TODAY, "This virus is a leading cause birth defects. Why isn't it screened more?", Cuevas, E. Oct. 2, 2023).
Perhaps you have a connection to one of these Republican U.S. Senators found at: https://www.
Sincerely,
Lisa Saunders
The USA Today article made it into Yahoo news (see newsfeed below)
Democrat and Chronicle
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