NY Assembly Proclaims June CMV Awareness Month; Passes Elizabeth's Law

On June 1, the New York Assembly proclaimed June 2022 as Cytomegalovirus Awareness Month in the State of New York. Sponsored by Assemblymember Linda B. Rosenthal, with many co-sponsors, the proclamation states: "CMV [cytomegalovirus] 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..." (In 2011, Congress named June National Cytomegalovirus (CMV) Awareness Month--see the CDC's CMV prevention fliers in English and Spanish.)

Just prior to the 2022 New York CMV Awareness Month proclamation, the Assembly passed "Elizabeth's Law" (A7560B, Rosenthal, L /S6287C, Mannion, J.) After the bill was introduced to the Assembly on May 24, bill sponsor Assemblymember Rosenthal explained her vote: "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" (New York State Assembly, 5-24-22 Session, 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).

I learned about cytomegalovirus (CMV) the hard way. My daughter Elizabeth was born with a severely damaged brain from the virus in 1989. I was at higher risk for contracting CMV because I had and worked with toddlers--and they, especially those in group care, 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 had 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).

"CMV is spread from person to person through body fluids. Day care workers, nurses, mothers of young children, and others who work with young children are at greatest risk of exposure to CMV. Since young children commonly carry CMV, pregnant women and women planning pregnancies should take extra care to avoid urine and saliva from young children,” stated Sunil K. Sood, M.D., Chair of Pediatrics, South Shore University Hospital, Attending Physician, Infectious Diseases, Cohen Children's Medical Center and Professor, Zucker School of Medicine at Hofstra/Northwell (NYMetroParents, 2016). Dr. Sood co-authored a study that changed the paradigm for treatment of congenital CMV (“Valganciclovir for symptomatic congenital cytomegalovirus disease”, 2015), and his newborn CMV screening program at Northwell Health became a model for the State of New York.

More than 30 years after the birth of Elizabeth, women are still largely unaware of CMV--until it’s too late for them to prevent it. "Imagine giving birth to a seemingly healthy newborn baby, only to find out a few weeks down the road that your baby is deaf…That is what happened to a Western New York family and they have found that they are not alone…” Marielle Fitzgerald, the baby’s mother, said, “‘Like most pregnant women, I did everything I could to ensure a healthy pregnancy…I followed all of my doctors recommendations to avoid certain foods. I didn't go on a vacation to Florida with our family to avoid Zika, right? But no one probably ever said I should avoid my own daughter's saliva. And if they had, I would have’”(CMV: Virus causing deafness in newborns, WGRZ-TV, 2017).

Sallie Permar, M.D., Ph.D., Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, New York-Presbyterian Komansky Children's Hospital, stated that CMV is "'a virus that has a PR [public relations] problem. It's the most common congenital infection in every population...It's a virus we have recognized for over 60 years as the cause of birth defects and brain damage in infants...'" (“Dr. Sallie Permar’s Work Protecting Mothers, Infants from HIV, CMV Lands Her Among ‘Giants’”, Weill Cornell Medicine, 2021).

Throughout her medical career, Gail J. Demmler-Harrison MD, Attending Physician, Infectious Diseases at Texas Children's Hospital and pediatric infectious disease specialist at Baylor College of Medicine in Houston, has been advocating for CMV education, but progress has been slow. Featured in the New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed" (Saint Louis, 2016), Dr. Demmler-Harrison stated that not providing CMV counseling is "a missed opportunity to save a baby from the devastating effects of CMV, including death in the womb and permanent disabilities.'"

In a New York State Legislative Women's Caucus meeting in March 2022, in which I was presenting, 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 successful 2018 CMV testing law that helps diagnose children with congenital CMV by requiring "testing for cytomegalovirus of newborns with hearing impairments" (Assembly Bill A587C). (To learn more about that, contact Assemblymember Linda B. Rosenthal.)

Angela Cote of Buffalo appreciates the 2018 CMV testing law because it led to the quick diagnosis of why Elise, born in 2019, failed her newborn hearing test (giving her access to early intervention), but wishes she had known about CMV before her pregnancy. She told me in a public access TV interview how shocked she was by the diagnosis. She couldn’t believe she had never heard of CMV, especially since she was surrounded by young children as a nanny and the mother of a toddler ("CytoMegaloVirus (CMV) - What Moms Wished They Knew," PAC-B TV, 2021).

Kelly Smolar Gerne, a mechanical engineer from Brooklyn told me, "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 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" (Facebook, 2021).

When Assemblymember Rosenthal sponsored the 2021 Cytomegalovirus Awareness Month Proclamation, it inspired an event in Lyons, New York. Approximately 222 silver-painted rocks, representing the estimated number of babies disabled by congenital CMV in New York each year, were placed on the Trail of Hope (Finger Lakes Times, Bruchiere, S., June 2021). Two moms in attendance, Jessica Keukelaar of Macedon and Kristin Schuster of Canandaigua, like me, worked as caregivers/teachers during their pregnancies. Neither Jessica nor Kristin had children of their own at the time, and both had never heard of CMV. Jessica is the mother of Kyleigh, born with congenital CMV in 2018, and Kristin is the mother of Autumn, born with congenital CMV in 2015. Autumn can be seen helping her mom arrange the silver CMV rocks in the music video, “Had I Known) (about CMV), Lyrics and Music by Debra Lynn Alt”, which also features images of those attending the event, including Jessica with her daughter Kyleigh, and Assemblyman Brian Manktelow, a co-sponsor of "Elizabeth's Law."

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, "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.

When I met adult CMV survivor Caroline Bailey, a former patient of Dr. Demmler-Harrison's, at the 2016 Congenital Cytomegalovirus Public Health & Policy Conference in Austin, Texas, I asked her to tell me her story. She said, "I am profoundly deaf, I have a cochlear implant and a hearing aid. But, I like to think I do pretty well in the world--I don't think I need much more than that. But, you know, it is surprising to me that more than 25 years after I was born that so many babies are still being infected with congenital CMV...What we can do to increase awareness and let more people know about this disease? It should be really just as well known as the Zika virus because the Zika virus and congenital CMV do many of the same things" ("A survivor in congenital CMV: In her own words", Lisa Saunders, YouTube, 2016).

According to Nellie Brown, MS, CIH, the following workers are at risk for CMV: "Childcare workers, early interventionists, early childhood providers (including daycare providers, pre-school teachers) and Healthcare workers (including nurses, therapists)" (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).

In addition to mothers and caregivers and teachers of toddlers, congenital CMV also affects certain populations more than others. Studies have shown that there are "Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection" (2018). (You can watch the short video on the topic: "CMV Racial Disparities" produced by The Massachusetts Congenital CMV Coalition, 2022).

In my effort to get New York legislators to pass "Elizabeth's Law", my husband Jim, a recently retired Pfizer scientist, and I are walking across the State of New York between Buffalo and Albany on the 360-mile Erie Canalway Trail, leaving behind #StopCMV rocks painted by Tabitha Rodenhaus of Buffalo, the mother of Kaia born with congenital CMV in 2016. We tell those we meet along the Trail, including doctors who have asked about our #Stop CMV rocks, of our belief that CMV education is a "women's rights" issue--that all women of childbearing age have the right to know about CMV (see note below).

Edel Law of Tappan said to me that Elizabeth's Law "is important to me because my three-year-old daughter has congenital CMV. It came as a total shock when at 31 weeks pregnant, I found out she had abnormal brain development. Upon further testing, we found out I had contracted and passed CMV onto my daughter. After learning about CMV, it was not shocking that I contracted the virus since I had a toddler in preschool and was an early childhood educator. My daughter has developmental delays, single sided deafness, wears a cochlear implant, and has a form of heart failure."

To learn more about June 2022 as Cytomegalovirus Awareness Month in the State of New York or "Elizabeth's Law" (A7560B/S6287C), contact Assemblymember Linda B. Rosenthal at 518-455-5802 or 212-873-6368.

To learn more about me, the New York Stop CMV Project, or our trek: Erie Canal Trail Challenge to Stop CMV Birth Defects. Pass "Elizabeth's Law" - A7560/ S6287A, write to me at: LisaSaunders42@gmail.com. I am the author of several books including, "Once Upon a Placemat--A Table Setting Tale: Coloring Book and CMV Prevention Tool" (available as a free pdf) and "Surviving Loss: The Woodcutter's Tale" (also available as a free pdf).

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Note: Jim and I believe that walking the Erie Canalway Trail sharing CMV information is in keeping with why Congress created the Erie Canalway National Heritage Corridor in 2000--because the "Erie Canalway was instrumental in the establishment of strong political and cultural ties between New England, upstate New York and the old Northwest and facilitated the movement of ideas and people ensuring that social reforms like...the women’s rights movement spread across upstate New York to the rest of the country..." (Congressional Bills, 106th Congress, 2000). As of June 5, 2022, Jim and I have walked 41% of the way across the State of New York (149 miles). Last summer, Spectrum News came to the Trail and our home to understand our reasons behind our quest and interviewed with Dr. Sunil Sood ("Couple pushes for law in memory of their daughter", Spectrum News , Houghtaling, J., 2021),

ADDITIONAL INFORMATION

CMV informational materials include:

1. CDC's CMV fliers in English and Spanish.
2. The National CMV Foundation's fliers/posters include: “ARE YOU PREGNANT”.
3. For child care workers: CMV Training Module created by the University of Connecticut.
4. 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)