Wednesday, May 25, 2022

NY Lawmakers Pass "Elizabeth's Law" to Educate Pregnant Women and Child Care Providers on Cytomegalovirus (CMV), #1 Birth Defects Virus

 



The New York Assembly passed “Elizabeth’s Law” (Assembly Bill A7560B/Senate Bill S6287C) on May 24, 2022, which requires "the  provision  of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus  infection  and  the treatments and methods of prevention of cytomegalovirus infection". (Photographs of the New York Assembly voting on  A7560B/ S6287C taken by the Assembly sponsor of the bill, Assemblymember Linda B. Rosenthal, on May 24, 2022.)

New York Lawmakers Pass "Elizabeth's Law" to Reduce Disabilities From Congenital Cytomegalovirus (CMV)


Awaiting Governor Kathy Hochul to Sign or Veto "Elizabeth's Law" (A7560B/ S6287C) to 

Educate Pregnant Women and Child Care Providers on CMV, #1 Birth Defects Virus 




Photograph of Elizabeth Saunders (1989-2006), of "Elizabeth's Law", surrounded by 222 silver cytomegalovirus (CMV) awareness rocks, representing the estimated number of children in New York disabled by congenital CMV each each year, at a June 2021 Cytomegalovirus Awareness Month event in Lyons, New York (photograph by Lisa Saunders).



Albany, New York--On May 24, the Assembly passed "Elizabeth's Law", A7560B (Rosenthal, L) /S6287C (Mannion, J). After the bill was introduced, Assemblymember Rosenthal explained her vote. She said, "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" (The public can watch the proceedings by clicking here: 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). 


When “Elizabeth’s Law” was first passed by the New York Senate in 2021, Senator John Mannion stated, "My legislation will provide for training and increased awareness so expecting moms have the information they need to make informed decisions to keep themselves and their babies safe. I thank and commend Lisa and Jim Saunders, who have turned their heartache into potentially life-saving action" ("NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", The Citizen, Harding, R., 2021).


Lisa Saunders of Baldwinsville learned about cytomegalovirus (CMV) the hard way. Her daughter Elizabeth was born with a severely damaged brain from the virus in 1989. Saunders was at higher risk for contracting CMV because she had and worked with toddlers, who 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 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).  
 
More than 30 years after the birth of Elizabeth Saunders, 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).

Dr. Sallie Permar, Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, New York-Presbyterian Komansky Children's Hospital, known for her “groundbreaking work on mother-to-child transmission of viruses" stated that CMV is "'a virus that has a PR 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.'"


When Lisa Saunders participated in an online New York State Legislative Women's Caucus meeting in March 2022, Assemblymember 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 2018 CMV law that helps diagnose children with congenital CMV by requiring “testing for cytomegalovirus of newborns with hearing impairments" (Assembly Bill A587C). 


Angela Cote of Buffalo appreciates the 2018 CMV 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 Angela wishes she had known about CMV before her pregnancy.  She told Lisa Saunders 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 Lisa Saunders, "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 on Facebook 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." 

Assemblymember Rosenthal now hopes to improve CMV education with “Elizabeth’s Law” (Assembly Bill A7560B/Senate Bill S6287C). When she sponsored the 2021 Cytomegalovirus Awareness Month Proclamation, it inspired an event in Lyons, New York, where 222 silver rocks were placed on the Trail of Hope to honor the estimated number of babies born each year in New York disabled by congenital CMV (Finger Lakes Times, June 2021). Two moms in attendance, Jessica Keukelaar of Macedon and  Kristin Schuster of Canandaigua, might have contracted CMV through their caregiver/teaching occupations as neither had children of their own during their pregnancies. Jessica is the mother of Kyleigh born with congenital CMV in 2018. She shared with Lisa Saunders the letter she sent to Assemblymember Rosenthal’s office where she stated, “I was a caregiver in a daycare center when I became pregnant with my daughter born with congenital cytomegalovirus (CMV)... I had never heard of CMV or the precautions to take. This bill [Elizabeth’s Law] is important to me because it came as a complete shock when my daughter was born full term, in 2018, with numerous urgent health issues due to CMV...My daughter has developmental delays, spastic cerebral palsy which affects her entire body, eating and digestive difficulties, progressive hearing loss, microcephaly, and more...Congenital CMV has affected every aspect of Kyleigh’s life, as well as our whole family. I wish that someone took the time to educate me about CMV since I was at an increased risk of infection.” 

Kristin Schuster, the mother of Autumn born with congenital CMV in 2015, had also never heard of CMV, or that she was at increased risk for the disease because of her occupation. She told Lisa Saunders, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure." Autumn can be seen helping her mom and Saunders place the silver CMV rocks to 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 Keukelaar 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, “Approximately 1-4% of all pregnant women will experience a primary CMV infection during their pregnancy. If you work in a child care setting, the risk increases to approximately 10%. If you have a toddler at home who is actively infected with CMV and shedding CMV in their saliva or urine, the risk is even higher, approaching 50% in some studies." Her letter concludes: "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.


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/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). (Watch short video, "CMV Racial Disparities", The Massachusetts Congenital CMV Coalition, 2022).

Edel Law of Tappan told Lisa Saunders 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."

In her effort to get New York legislators to pass "Elizabeth's Law", Lisa Saunders and her husband Jim, a recently retired Pfizer scientist, 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. Jim and Lisa tell those they meet along the Trail, including doctors who have asked them about their #Stop CMV rocks, of their belief that CMV education is a "women's rights" issue--that all women of childbearing age have the right to know about CMV. Lisa says, "Congress created the Erie Canalway National Heritage Corridor in 2000 because it ensured 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 22, 2022, Lisa and Jim have walked 45% of the way across the State of New York (163 miles). Saunders created a dramatic one-minute trailer of their trek: Erie Canal Trail Challenge to Stop CMV Birth Defects. Pass "Elizabeth's Law" - A7560/ S6287A.  

Lisa Saunders hopes the public will contact New York Governor Kathy Hochul and ask her to sign "Elizabeth's Law" (A7560B/ S6287C) into law. Saunders said, "If you are composing a letter or email in support of the bill, it would be helpful if it was addressed to Honorable Kathy Hochul and forwarded to Assemblymember Linda B. Rosenthal's office to add it to their packet of letters to present to the governor" (email it to Nicholas R. Guile, Legislative Aide to Assemblymember Linda Rosenthal, at guilen@nyassembly.gov).

To learn more about "Elizabeth's Law", contact Assemblymember Linda B. Rosenthal through: https://nyassembly.gov/mem/Linda-B-Rosenthal/contact/

To help educate the public about CMV, share resources from the CDC CMV Resource Center: https://www.cdc.gov/cmv/resources/index.html

To learn more about Lisa Saunders and the New York Stop CMV Project, write to: LisaSaunders42@gmail.com. Saunders is 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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ADDITIONAL INFORMATION

Available 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)






Lisa and Jim Saunders leave #Stop CMV rocks, painted by Tabitha Rodenhaus of Buffalo, the mother of Kaia born with congenital CMV in 2016, along the Erie Canalway Trail as they walk across the State of New York trying to raise awareness of CMV and "Elizabeth's Law" (photograph by Tabitha Rodenhaus). 

Today, 5/25/22, I met with Senator John W. Mannion’s office staff at Cafe 108 to thank them for their work as the Senate Sponsor of “Elizabeth’s Law” (S6287C), which has now passed both the Senate and the Assembly. Now it’s up to the governor to sign it into law to prevent the leading viral cause of birth defects, cytomegalovirus (CMV)! (The photo of me holding an image of my daughter and a #StopCMV rock, painted by CMV mom Tabitha Rodenhaus, was taken by Victoria Coit, Director of Public Affairs for Senator Mannion).




Lisa Saunders shows her Stop CMV hand as she and her husband, Jim Saunders, walk the Erie Canalway Trail, which is part of the Empire State Trail (photograph by Jim Saunders). 



Lisa Saunders speaks at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia, about how congenital cytomegalovirus (CMV) affected her daughter's life and death at the 2008 International Congenital CMV Conference sponsored by the CDC and the Congenital CMV Foundation (photograph by Gail J. Demmler-Harrison MD).


Media Coverage in New York Regarding CMV Legislation



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1-518-474-8390 | Office hours: 9:00am to 5:00pm

Contact By Mail:

The Honorable Kathy Hochul
Governor of New York State
NYS State Capitol Building
Albany, NY 12224


Lisa Saunders letter to the governor: 

Dear Honorable Kathy Hochul:

I strongly support  A7560B/S6287C,named "Elizabeth's Law" in memory of my daughter.  The bill requires "the  provision  of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus [CMV} infection  and  the treatments and methods of prevention of cytomegalovirus infection". 

The CDC has already created excellent congenital CMV materials in English and Spanish at: https://www.cdc.gov/cmv/resources/pregnant-women-parents.html

My daughter Elizabeth was born with a severely damaged brain from congenital CMV in 1989 and died at Nyack Hospital after a seizure in 2006. When I was pregnant with Elizabeth, I ran a licensed child care center in my home and cared for a toddler of my own--activities that put my pregnancy at risk for CMV yet I never heard of it--most women still haven't. 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 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. 

You should be aware that according to studies, there are "Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection" (2018). You can learn more by watching this short video: "CMV Racial Disparities" at: https://fb.watch/ddTMqFlqG-/

The importance of Elizabeth’s Law is evident in the data: with more than 3 in every 5 children under the age of 5 being cared for in a childcare facility, and 30 to 40% of preschoolers in daycare excreting CMV in their saliva and/or urine, and up to 70% of children ages 1 to 3 years in group care settings excreting the virus, I strongly urge the passage of “Elizabeth’s Law.” CMV is recognized as a workplace hazard by the Occupational Safety and Health Administration (OSHA), however, in 2016, only 18.5% of licensed “in-home” daycare providers surveyed had heard of CMV. This level of awareness is insufficient in protecting workers, especially when OSHA acknowledges that childcare workers are at a greater risk of infection.

Increased awareness and education about CMV enhances the health and safety of expecting mothers and their unborn children, while empowering the workforce to make more informed decisions about the occupational hazards of CMV and its prevention. 

Thank you in advance for your help.


Sincerely, 


Lisa Saunders

New York Stop CMV

[my home address and phone #]

Baldwinsville, NY 13027

Music Video "Had I known (about CMV)"





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