Saturday, January 8, 2022

Supporters of CMV Prevention Education to Stop Birth Defects. Has your organization written Memo of Support for “Elizabeth’s Law”,A7560 / S6287A?


Does your organization help mothers have healthy newborns? Do they want prevent the deafness, blindness and brain damage caused by cytomegalovirus (CMV), the leading viral cause of birth defects? 

Sample "Letters of Support" for “Elizabeth’s Law”, A7560S6287A:

1)  Demmler-Harrison MD, Gail J. (2022) Letter to Members of NY Assembly and Senate, February 2. (Dr. Demmler Harrison was
featured in the New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed"   (Saint Louis, 2016). Her letter illustrates why cytomegalovirus (CMV) is more dangerous to a child care provider's pregnancy than other childhood diseases in childcare centers and why it should be discussed with all pregnant women. Click on CMV Law Support Gail J. Demmler-Harrison MD, and note Dr. Demmler-Harrison's heartbreaking last sentence: "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.'”

2) National CMV Foundation (click for letter by Amanda Devereaux RN, BSN)

3)New York Stop CMV (click for letter by Lisa Saunders, mother of child born with congenital CMV)

4)Group B Strep International by Marti Perhach, GBSI CEO/Cofounder

Are you willing to write a letter, or add your name to a group letter, in support of “Elizabeth’s Law”: A7560S6287A? The bill is named in memory of my daughter born with a severely damaged brain. "Elizabeth's Law" requires that child care providers and pregnant women be educated about CMV and the precautions to take around the saliva and urine of young children

According to the Centers for Disease Control and Prevention (CDC), "CMV is the most common infectious cause of birth defects in the United States. About 1 out of 5 babies with congenital CMV infection will have birth defects or other long-term health problems, such as hearing loss."

"Congenital CMV infection is arguably the most common preventable cause of neonatal disability in the United States. More children will have disabilities due to congenital CMV than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS." (National CMV Foundation, www.nationalcmv.org/overview/newborn-screening)

"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." (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). 
If you are willing to write a letter of support for CMV prevention education on behalf of your organization to New York legislators, please let me know at LisaSaunders42@gmail.com and I will help get your letters or memos to elected officials.

Right now, this January 2022, we need to get the bill out of the New York Assembly Children and Families Committee so it can be voted on by the NY Assembly (the NY Senate passed the bill last year-- ("NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness").

When I left New York to move to Connecticut with my husband Jim, a Pfizer scientist, we helped Connecticut get a CMV law passed (see attached photo and caption below my signature). Having since moved back to New York, I am continuing my work to help children avoid the suffering our daughter endured until her death at age 16 during a seizure. Elizabeth had brain damage, hearing and vision loss, epilepsy and cerebral palsy. 

I hope you can help me prevent this from happening to others by giving women a chance to protect their pregnancies from CMV by sharing the CDC's CMV prevention tips:  “You may be able to lessen your risk of getting CMV by reducing contact with saliva and urine from babies and young children. The saliva and urine of children with CMV have high amounts of the virus. You can avoid getting a child’s saliva in your mouth by, for example, not sharing food, utensils, or cups with a child. Also, you should wash your hands after changing diapers”  

While we wait for laws to ensure women are told about the leading viral cause of birth defects, please consider sharing these CDC flyers in English and Spanish found at: https://www.cdc.gov/cmv/resources/pregnant-women-parents.html

Thank you in advance for your help or advice.

Sincerely,

Lisa Saunders

216 Peakwood Lane

Baldwinsville, NY 13027

Facebook.com/NYStopCMV

Music Video "Had I known (about CMV)"


Education, Elizabeth’s Law- Assembly Bill A7560

GOAL / STATUS: BILL CURRENTLY IN YOUR COMMITTEE (already passed by the Senate in 2021)
  • Requires childcare 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. Such physician shall also discuss the risks associated with and the transmission of cytomegalovirus with such patient.

NINE BENEFITS OF CMV PREVENTION EDUCATION - 
Compliance with proclamations and healthier babies 

  1. 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;...".  CMV prevention education is not "part of standard prenatal care” (Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.) 
  2. CMV education has been proven to help prevent women from contracting CMV. According to the New York Times, "A study in a French hospital found five to 10 minutes of counseling about CMV prevention resulted in fewer women contracting the virus. In another study, pregnant mothers shown a video and 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, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed", Catherine Saint Louis, 2016). 
  3. New York Commissioner of Health said CMV education was "Imperative": Howard A. Zucker, M.D., J.D , stated in 2018: “it is imperative that we give women of reproductive age the information they need to make informed decisions for themselves and their families...According to the Centers for Disease Control and Prevention (CDC), female workers of reproductive age in child care centers should be educated on CMV and its potential risks, and should have access to appropriate hygiene measures to minimize occupationally-acquired infection..." 
  4. Compliance with OSHA, which recognizes CMV as a “hazard” for childcare workersNew York's current childcare worker training law does not require specific education on CMV. Recent surveys show that most child care providers do not know about CMV and many acknowledge using diaper wipes to clean hands instead of following proper protocols (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). 
  5. Prevention education should save tax dollars on educating and treating children disabled by CMVLicensed child care providers are typically trained in first aid and CPR, etc., to ensure the health of the children in their care. CMV prevention can easily be included in their training on infectious diseases by distributing the CDC's  flyers on CMV in English and Spanish: https://www.cdc.gov/cmv/resources/pregnant-women-parents.html. They flyers can also be distributed at a patient's first prenatal appointment. (The medical costs of cCMV are high. (https://cmv.usu.edu/Uploads/pdfs/17739_9664Scott%20D.Grosse.pdf). The median cost of healthcare for a child with a symptomatic case of cCMV is 25.2 times higher than that of a child without cCMV over the course of the first four years. In the general population, the median out-of-pocket expenditures throughout the first four years of a child’s life is $1,508. Among children with symptomatic cCMV, that cost is almost four times as high, at $6,766 per child. Among children with neurological complications resulting from cCMV, the median out-of-pocket cost increased to $8,511.)
  6. Educating child care providers about CMV can reach mothers who use group care--hopefully before they become pregnant with their next child. Women who have young children in group child care are at an increased risk for CMV. "Parents of children in day-care centers are also at increased risk for contracting CMV" (Pass et al, 1986). One pediatrician in Canada stated,  “Almost all the babies that I see who have congenital CMV, there is an older toddler at home who is in daycare,” said Dr. Jason Brophy, a pediatric infectious disease specialist (Ottawa Citizen, Payne, 2018). 
  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" - https://www.congress.gov/bill/112th-congress/senate-resolution/215Utah and Idaho passed legislation to ensure those who work with children know about their occupational risk for CMV. 
  8. Respects Women's Rights: According to Amnesty International, women have the right "to enjoy the highest attainable standard of physical and mental health". We believe women have the right to protect their pregnancies from infections and all other known causes of preventable birth defects. 
  9. Compliance with the American Academy of Pediatrics (AAP): “Staff of childbearing age who care for infants and children should be provided the following information...The availability of counseling and testing for serum antibody to CMV to determine the caregiver/teacher’s immune status...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” (AAP et al., 2017, https://nrckids.org/CFOC/Database/7.7.1.1). 





Photo Caption:
Ceremonial bill signing for Public Act 15-10: An Act Concerning Cytomegalovirus at the Office of the Governor in Hartford, Conn., on July 28. Left to right: Jane Baird, Government Relations, Connecticut Children’s Medical Center; Dr. Wallis Molchen, Chief Resident, Connecticut Children’s Medical Center; Jane Brancifort, Deputy Commissioner, Department of Public Health; State Representative John Hampton; Dr. Brenda K. Balch, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion; Nancy Wyman, Lt. Governor; Lisa Saunders, parent representative, Congenital Cytomegalovirus Foundation, holding a picture of her deceased daughter, Elizabeth (Lizzie); State Representative Kevin Ryan; Governor Dannel P. Malloy; Senator Cathy Osten; Ken Hiscoe, Pfizer, Government Relations; Jarred and his mother, Melvette Ruffin; DeVaughn Ward, Liaison, Department of Public Health; and Kinson Perry, lobbyist at Rome, Smith and Lutz.
Right now, this January 2022, we need to get the bill out of the New York Assembly Children and Families Committee so it can be voted on by the NY Assembly (the NY Senate passed the bill last year-- ("NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness").

TO GET THE CMV EDUCATION LAW PASSED IN NEW YORK:

Right now, this January 2022, we need to get the bill out of the New York Assembly Children and Families Committee so it can be voted on by the NY Assembly (the NY Senate passed the bill last year-- ("NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness").

So please email these folks:
ad28.schedule@gmail.com, arecchia@nyassembly.gov, andersonk@nyassembly.gov, byrnesm@nyassembly.gov, clarks@nyassembly.gov, cruzc@nyassembly.gov, darlingt@nyassembly.gov, DavilaM@nyassembly.govFrontusM@nyassembly.gov, gallahanj@nyassembly.gov, gonzalezrojasj@nyassembly.gov, jeanpierrek@nyassembly.gov, lunsfordj@nyassembly.gov, meeksd@nyassembly.gov, MillerML@nyassembly.gov, mitaynesm@nyassembly.gov, salkaj@nyassembly.gov, vanelc@nyassembly.gov,

 

Subject and content could be something like:


Subject: Children and Families Committee: Vote for "Elizabeth's Law" (A7560 / S6287A) to prevent cytomegalovirus (CMV), a leading cause of brain damage, hearing loss


Dear Assembly Children and Families Committee:



My name is ____ from [organization if you are part of one]. I would like you co-sponsor "Elizabeth's Law" (A7560 / S6287A), named in memory of a girl who died from complications of congenital CMV (a seizure) in New York. "Elizabeth's Law" would ensure pregnant women and child care providers are educated on how to protect their pregnancies from the leading viral cause of birth defects, cytomegalovirus or CMV. Many new mothers are stunned to learn their child's brain damage, vision or hearing loss might have been prevented had they known the precautions to take around the toddlers in their care just prior to or during her pregnancy.  As you may be aware, the New York Assembly and Senate proclaimed June 2021 as Cytomegalovirus Awareness Month, stating, that "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..." The CDC has a lot of information about this preventable disease at: cdc.gov/cmv.


"Elizabeth's Law" (A7560 / S6287A) was passed by the New York Senate in 2021.


Sincerely,

[Name/address]



ABOUT CMV

According to the Centers for Disease Control and Prevention (CDC), "CMV is the most common infectious cause of birth defects in the United States. About 1 out of 5 babies with congenital CMV infection will have birth defects or other long-term health problems, such as hearing loss."

"Congenital CMV infection is arguably the most common preventable cause of neonatal disability in the United States. More children will have disabilities due to congenital CMV than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS." (National CMV Foundation, www.nationalcmv.org/overview/newborn-screening)

"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." (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). 

"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." (BMC Public Health, 2005, https://doi.org/10.1186/1471-2458-5-70)

PROBLEM


1) CMV prevention education is not "part of standard prenatal care” (Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.). 

Solution: Women can better protect their pregnancy if given CMV information at first prenatal visit. 

2) The current law in New York for the education of childcare providers does not require specific education on any particular illnesses. 

Solution: Licensed child care providers are typically trained in first aid, CPR, etc., to ensure the health of the children in their care. CMV prevention can easily be included in their training on infectious diseases. 


SOLUTION

Make women CMV aware

"Pregnant women may face certain challenges to practicing prevention strategies but, overall, are motivated make changes to increase their chances of having a healthy baby." (Using theory-based messages to motivate U.S. pregnant women to prevent cytomegalovirus infection, Levis, BMC Womens Health, 2017)

Distribute CDC's flyers on CMV in English and Spanish at: https://www.cdc.gov/cmv/resources/pregnant-women-parents.html
and support CMV prevention education. 

Supporters of CMV prevention education include:
  1. New York State Assembly--they proclaimed June 2021 Cytomegalovirus Awareness Month: " 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;..."
  2. New York State Senate - They unanimously passed "Elizabeth's Law" in 2021 ( "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", The Citizen, Robert Harding (June 2, 2121).
  3. New York Commissioner of Health (Dr. Zucker). In 2018, Howard A. Zucker, M.D., J.D , stated: “it is imperative that we give women of reproductive age the information they need to make informed decisions for themselves and their families...According to the Centers for Disease Control and Prevention (CDC), female workers of reproductive age in child care centers should be educated on CMV and its potential risks, and should have access to appropriate hygiene measures to minimize occupationally-acquired infection..." 
  4. New York Department of Health: "The risk of CMV infection in hospital workers is not greater than it is in others in the community and is probably low because of careful hand washing practices. In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection. In both settings, good hygiene and careful hand washing are the most important control measures. Pregnant women working in child care facilities should minimize direct exposure to saliva and avoid kissing babies or young children on the mouth. Hugging is fine and is not a risk factor." (https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm)
  5. National CMV Foundation wrote to the New York  Assembly Children and Families Committee  stating, "We enthusiastically support this bill and its goals of including congenital CMV as part of a public health education program for childcare providers and women seeking prenatal care." Click for letter
  6. Sallie Permar, M.D., Ph.D., Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, New York-Presbyterian Komansky Children’s Hospital. Dr. Permar stated that CMV is “'a virus that has a PR problem...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). 
  7. 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. He stated, "Since young children commonly carry CMV, pregnant women and women planning pregnancies should take extra care to avoid urine and saliva from young children” (NYMetroParents, 2016).

NATIONAL ORGANIZATIONS
  • U.S. Congress: "Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children"(https://www.congress.gov/bill/112th-congress/senate-resolution/215).
  • Centers for Disease Control and Prevention (CDC) - "People who have frequent contact with young children may be at greater risk of CMV infection because young children are a common source of CMV. " (https://www.cdc.gov/cmv/congenital-infection.html)
  • Occupational Safety and Health Administration (OSHA) recognizes CMV as a “hazard” for childcare workers (https://www.osha.gov/cytomegalovirus/hazards).
  • American Academy of Pediatrics (AAP): “Staff of childbearing age who care for infants and children should be provided the following information...The availability of counseling and testing for serum antibody to CMV to determine the caregiver/teacher’s immune status...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” (AAP et al., 2017, https://nrckids.org/CFOC/Database/7.7.1.1). Model Child Care Health Policies includes a document to be signed by staff (paid or volunteer) to show “Acceptance of Occupational Risk by Staff Members,” which includes “exposure to infectious diseases (including infections that can damage a fetus during pregnancy)” (American Academy of Pediatrics, Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116).
  • American College of Obstetricians and Gynecologists (ACOG) - 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...(https://www.acog.org/womens-health/faqs/reducing-risks-of-birth-defects ).
  • March of Dimes - "CMV often spreads during diaper changes, bathing and other close contact with babies and young children. Children can get infected with CMV at child care or school and pass it on to their families, caregivers and other children... CMV spreads easily in child care centers or preschools where children share toys that may carry CMV." (https://www.marchofdimes.org/complications/cytomegalovirus-and-pregnancy.aspx)
  • National CMV Foundation  - "Cytomegalovirus, or CMV, is a public health issue... we support a policy agenda aimed at ensuring access to education for women of childbearing age, accelerating research funding, screening newborns for congenital CMV, and advocating for a vaccine. Congenital CMV infection is largely undetected because the majority of affected infants are asymptomatic at birth."  https://www.nationalcmv.org/about-us/advocacy Wall Poster “Are You Pregnant?”:
    https://www.nationalcmv.org/NCMVF/media/ncmvf/download-content/CMV_Awareness-Flyer_11x17.pdf?ext=.pdf
  • Congenital CMV Disease Research Clinic & Registry - "Our mission is to provide continuous research on the biology, epidemiology, clinical manifestations, methods to diagnose treatment and prevention of congenital CMV disease as well as to raise public awareness of the life-long impact it may have. We also strive to improve the quality of life of children through prevention of disease by providing community resources and a parent support worldwide network." Dr. Gail J. Demmler Harrison
  • National Association for the Education of Young Children and its document, “NAEYC Early Childhood Program Standards and Accreditation Criteria & Guidance for Assessment,” acknowledges the need to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…)”p.90.
  • ChildCare Aware of America: "if you are a childcare worker, a nursery volunteer, or have a toddler in child care, you need to know about cytomegalovirus (CMV)." (The Danger of Spreading CMV: How We Can Protect Our Children (June 2017).
  • Group B Strep International: "Are you pregnant or plan to be and have a toddler in group care or work/volunteer in early childhood education or daycare? If you don’t know about your increased exposure to cytomegalovirus (CMV), you should."
  • MotherToBaby.org: "Close contact with children less than three years old, such as in daycare settings, is a common way to become infected with CMV."
  • Moderna: "Moms-to-be should talk to their doctors about CMV and take precautions."


For more information about CMV as an occupational hazard, contact: 

Nellie Brown, MS, CIH, Director of Workplace Health & Safety Programs, Lead Programs Manager, Certified Industrial Hygienist, ILR Outreach Statewide, ILR School, Cornell University. She authored and presented: "Occupational Exposure to Cytomegalovirus (CMV): Preventing Exposure in Child Care and Educational Settings, Including OSHA Advisories" (https://ecommons.cornell.edu/handle/1813/73040). 

The following is my "Letter of Support," which you are welcome to revise:


Memo of Support

Elizabeth’s Law”

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

Named in memory of Elizabeth Saunders, born with a severely damaged brain to a licensed child care provider and mother of a toddler uneducated about her risk for cytomegalovirus (CMV). "Elizabeth's Law" requires the education of pregnant women and child care providers about CMV prevention. 

TITLE: AN ACT to amend the social services law, in relation to requiring 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; and to amend the public health law, in relation to requiring certain physicians to distribute informational materials concerning cytomegalovirus.

PROBLEM: Congenital Cytomegalovirus (cCMV) is acquired in utero and can result in serious birth defects in the baby. cCMV is the most common congenital (present from birth) infection in the U.S. About 1 in every 200 babies is born with a cCMV infection. Of these babies, around 1 in 5 will have long-term health problemsi such as hearing and vision loss, microcephaly (small head), developmental and motor delays, and seizures (CDC).ii

  • In New York, every year an estimated 222 babies are born permanently disabled by cCMV iii

  • 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 (ACOG)).

  • Pregnant women with young children at home also are at risk and should take these steps”(ACOG)).iv

  • Nearly half of women have been infected with CMV before their first pregnancy. Of women who have never had a CMV infection, it is estimated that 1 to 4% of them will be infected during pregnancy.”v

  • OSHA recognizes CMV as a “hazard” for childcare workersvi and the American Academy of Pediatrics (AAP) states, “With regard to child-to-staff transmission, studies have shown increased rates of infection with CMV in caregivers/teachers ranging from 8% to 20%.”vii

  • Women who have young children in group child care are at an increased risk for CMV.viii

  • Racial and ethnic minorities are at higher risk for CMV.ix

  • The risk of CMV infection in hospital workers is not greater than it is in others in the community and is probably low because of careful hand washing practices. In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection.”x

  • cCMV is largely preventable, but 91% of women do not know about the disease or prevention.xi

SOLUTION: “You may be able to lessen your risk of getting CMV by reducing contact with saliva and urine from babies and young children. The saliva and urine of children with CMV have high amounts of the virus. You can avoid getting a child’s saliva in your mouth by, for example, not sharing food, utensils, or cups with a child. Also, you should wash your hands after changing diapers.”xii

SUPPORT A7560 / S6287A, “Elizabeth’s Law”

Dr. Howard A. Zuckers, New York State Commissioner of Health, stated, "it is imperative that we give women of reproductive age the information they need to make informed decisions for themselves and their families.”xiii 

Supporters of cCMV prevention: CDC, OSHA, AAP, ACOG and NY Commissioner of Health. The NY Senate/Assembly proclaimed June 2021 Cytomegalovirus Awareness Month. Utah and Idaho have cCMV legislation accompanied by ongoing funding. The NY Senate passed “Elizabeth’s Law” in 2021.

To learn more, contact me, Lisa Saunders of NY Stop CMV, at LisaSaunders42@gmail.com.

REFERENCES


i https://www.cdc.gov/cmv/awareness-month.html

ii https://www.cdc.gov/cmv/congenital-infection.html

iii In 2019, 221,539 babies were born in NY, with an estimated 1,108 born with cCMV. Using CDC’s averages, 222 of those babies were born permanently disabled from cCMV.

iv https://www.acog.org/womens-health/faqs/reducing-risks-of-birth-defects

v https://www.cdc.gov/cmv/clinical/overview.html

vi https://www.osha.gov/cytomegalovirus/hazards

vii https://nrckids.org/CFOC/Database/7.7.1.1

viii https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046747/

ix https://pubmed.ncbi.nlm.nih.gov/29784513/

x https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm

xi https://digitalcommons.usu.edu/jehdi/vol1/iss2/6/

xii https://www.cdc.gov/cmv/fact-sheets/parents-pregnant-women.html

xiii https://health.ny.gov/commissioner/letters/docs/2018-08.pdf


If you are an individual  living in New York who would like your legislator to vote in favor if the bill, you may revise this statement: 


My name is ____and I live in your district on ______ St/Rd/Ln in the Town of _____. I would like you co-sponsor Assembly Bill A7560, named "Elizabeth's Law", in memory of a girl who died in New York, to ensure pregnant women and child care providers are educated on how to protect their pregnancies from the leading viral cause of birth defects, cytomegalovirus or CMV. Many new mothers are stunned to learn their child's brain damage, vision or hearing loss might have been prevented had they known the precautions to take around the toddlers in their care just prior to or during her pregnancy.  As you may be aware, the New York Assembly and Senate proclaimed June 2021 as Cytomegalovirus Awareness Month, stating, that "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..." The CDC has a lot of information about this preventable disease at: cdc.gov/cmv.

ADDITIONAL INFORMATION ABOUT THE BILL:

Assembly Bill A7560 states that it is "AN ACT to amend the social services law, in relation to requiring 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; and to amend the public health law, in relation to requiring certain physicians to distribute informational materials concerning cytomegalovirus ...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. Such physician shall also discuss the risks associated with and the transmission of cytomegalovirus with such patient."

Thank you in advance for your help.
[name, address, phone number]



Never heard of CMV? You are not alone. Here are six possible reasons why:

1) CMV prevention education is not "part of standard prenatal care” (Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)

2) Doctors don’t want to frighten, worry or “burden” patients. New York Times: "The American College of Obstetricians and Gynecologists [ACOG] used to encourage counseling for pregnant women on how to avoid CMV. But [ in 2015], the college reversed course...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).  

3)"The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. 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).

4) 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.) 

5) Low media coverage. In the HealthNewsReview.org article, "Why does CMV get so much less news coverage than Zika — despite causing far more birth defects?"  the author states,  “Researchers we spoke with identified the same factors – fear and the epidemic/endemic nature of the diseases – as driving the media disparity” (Shipman, 2018). 

6) Although U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970), there are no federal laws governing CMV education policies for child care workers. The Department of Labor states, "Education and training requirements vary by setting, state, and employer." The Occupational Safety and Health Administration (OSHA) lists CMV as a "Recognized Hazard," yet recent surveys show that most child care providers do not know about CMV and many acknowledge using diaper wipes to clean hands instead of following proper protocols (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). 



Relevant Media Coverage




Ten Reasons Why Caregivers/Teachers Must be Educated About CMV

1) According to OSHA, CMV is a "Recognized Hazard". OSHA states that all workers have the right to “receive information and training on job hazards, including all hazardous substances in your workplace.” OSHA and CMV: "Childcare jobs may involve contact with children infected with CMV or their saliva, nasal secretions, or excrement. CMV is spread through exposure to infected body fluids. Since a person with CMV may show no symptoms, childcare workers should utilize proper handwashing and sanitization procedures. Childcare workers should also use personal protective equipment (PPE), such as gloves, to help prevent exposure to body fluids” (www.osha.gov/SLTC/cmv/hazards.html).


2) CMV is a viral infection that is common in children. Up to 70% of children ages 1-3 years in group care settings excrete CMV. The New York Health Department website states, "In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection...Pregnant women working in child care facilities should minimize direct exposure to saliva and avoid kissing babies or young children on the mouth. Hugging is fine and is not a risk factor...." Information is provided in English and Spanish at: https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm


3) HOWARD A. ZUCKER, M.D., J.D ,Commissioner of Health for New York, stated: "According to the Centers for Disease Control and Prevention (CDC), female workers of reproductive age in child care centers should be educated on CMV and its potential risks, and should have access to appropriate hygiene measures to minimize occupationally-acquired infection " (August 2018).


4) American Academy of Pediatrics states: “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), "Caring for Our Children: National Health and Safety Performance Standards; Guidelines for Early Care and Education Programs", American Academy of Pediatrics et al.).


5) Approximately 1 in 200 children are born in the U.S. with congenital CMV. The impact on the fetus may include deafness, blindness, cerebral palsy, developmental disabilities, seizures and even death (www.cdc.gov/cmv). Congenital cytomegalovirus is a more common cause of disabilities than Zika, Down syndrome and fetal alcohol syndrome. CMV is the leading viral cause of birth defects ("Cytomegalovirus Infection in Pregnancy: Should All Women Be Screened?", Carlson et al., 2010).


6) Free CMV educational tools available: CDC has flyers in English and Spanish.Cornell University and the University of Connecticut provide training videos. (A great Link to CMV resources: https://cmvmass.org/workplace-prevention-for-employers/)


7) Recent surveys show that most child care providers do not know about CMV and many acknowledge using diaper wipes to clean hands instead of following proper protocols (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). In the U.S., “61 % of children under the age of 5 are cared for in a child care facility...Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases” (Thackeray and Magnusson, 2016).


8) Child care providers serving children receiving assistance through the Child Care and Development Fund program must receive training on topics covered by the Child Care and Development Block Grant Act of 2014. “Caregivers and teachers are required to be educated regarding Standard Precautions [developed by CDC] before beginning to work in the program and annually thereafter. For center-based care, training should comply with requirements of the Occupational Safety and Health Administration (OSHA)” (Caring for Our Children Basics).

9) Child care providers accredited by National Association for the Education of Young Children should already be familiar with the document, “NAEYC Early Childhood Program Standards and Accreditation Criteria & Guidance for Assessment,” which acknowledges the need to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…)”

10) Potential Cost of Not Warning Workers about CMV: In New South Wales, “a childcare worker and her severely disabled son were awarded $4.65 million. A Court of Appeal ruled that the child's disabilities resulted from the woman being infected with cytomegalovirus (CMV) at work (Hughes v SDN Children's services 2002)” (Queensland Government, Australia, 2017). Meridian Lawyers stated: "The allegations of negligence were that Sydney Day Nursery breached its duty of care to Linda ...by failing to warn her of the risks of CMV in circumstances where the centre knew or ought to have known of the risks of CMV to pregnant women…"

###

Education, Elizabeth’s Law Assembly Bill A7560

  • Requires 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
  • Requires certain physicians to distribute informational materials concerning cytomegalovirus


Why We Need a CMV Education Law

  • NY State Assembly proclaimed June CMV Awareness Month, stating, "CMV is also transmitted by contact with saliva and urine, often from diaper-wearing children to adults...It is difficult for mothers to protect themselves...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…”
  • Education helps 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).
  • 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"
  • American Academy of Pediatrics: “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).
  • Child Care Providers Unaware of CMV: Surveys show that most caregivers do not know about CMV and many acknowledge using diaper wipes to clean hands instead of following proper protocols (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands.
  • OSHA: CMV is a "Recognized Hazard" for child care providers. Workers have the right to “receive information and training on job hazards...”
  • New York Child Care Training: NY’s law for the training of childcare providers does not require education on CMV (or any particular illnesses). Yet because CMV can be so devastating to a pregnancy, NY Health Commissioner Dr. Zucker stated "female workers of reproductive age in child care centers should be educated on CMV and its potential risks..." ( 2018). Training already includes infection control, so CMV can be included there.  CMV infections are often  “silent,”  meaning  the person infected  has no signs or  symptoms. The AAP states, "Because this virus is so common in child care settings, exclusion of a CMV-infected child to reduce disease transmission has no benefit.”

Additional notes for those in child care industry:

Child care providers would not need to identify or “recognize CMV”--especially since "Most  infections  with  CMV are  'silent,'  meaning  the person infected  has no signs or  symptoms" (National Congenital  CMV Disease  Registry). Also, the American Academy of Pediatrics states that it is inappropriate to remove a child with known congenital CMV from the child care group--especially since so many are excreting it - "Because this virus is so common in child care settings, exclusion of a CMV-infected child to reduce disease transmission has no benefit:  https://www.pediatricandadolescentmedicine.net/Cytomegalovirus-CMV-Infection

 

Assembly Bill A7560 is meant to inspire child care workers to diligently follow the infection control measures they are already given. 


The current New York law for child care provider training does not require specific education on any other particular illnesses. It is important to note, however, that CMV is different--it is much more dangerous to the child care provider's pregnancy than the common cold. 


Perhaps some of the following points will help explain why states like Utah and Idaho follow recommendations from the CDC and American Academy of Pediatrics to educate  caregivers/teachers about CMV:

 

Why is CMV more dangerous than other common illnesses transmitted by children?


1.       The current New York law for the education of childcare providers does not require specific education on any particular illnesses, despite Dr. Zucker’s statement that "According to the Centers for Disease Control and Prevention (CDC), female workers of reproductive age in child care centers should be educated on CMV and its potential risks, and should have access to appropriate hygiene measures to minimize occupationally-acquired infection..." (Newsletter, August 2018).

2.       According to OSHA, CMV is a "Recognized Hazard". OSHA states that all workers have the right to “receive information and training on job hazards, including all hazardous substances in your workplace.” OSHA and CMV: "Childcare jobs may involve contact with children infected with CMV or their saliva, nasal secretions, or excrement. CMV is spread through exposure to infected body fluids. Since a person with CMV may show no symptoms, childcare workers should utilize proper handwashing and sanitization procedures. Childcare workers should also use personal protective equipment (PPE), such as gloves, to help prevent exposure to body fluids” (www.osha.gov/SLTC/cmv/hazards.html).

3.        American Academy of Pediatrics: “Staff of childbearing age who care for infants and children should be provided the following information...The availability of counseling and testing for serum antibody to CMV to determine the caregiver/teacher’s immune status...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), "Caring for Our Children: National Health and Safety Performance Standards; Guidelines for Early Care and Education Programs", American Academy of Pediatrics et al.).

4.       Recent surveys show that most child care providers do not know about CMV and many acknowledge using diaper wipes to clean hands instead of following proper protocols (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). In the U.S., “61 % of children under the age of 5 are cared for in a child care facility...Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases” (Thackeray and Magnusson, 2016).

5.       Child care providers serving children receiving assistance through the Child Care and Development Fund program must receive training on topics covered by the Child Care and Development Block Grant Act of 2014. “Caregivers and teachers are required to be educated regarding Standard Precautions [developed by CDC] before beginning to work in the program and annually thereafter. For center-based care, training should comply with requirements of the Occupational Safety and Health Administration (OSHA)” (Caring for Our Children Basics).

6.       Child care providers accredited by National Association for the Education of Young Children should already be familiar with the document, “NAEYC Early Childhood Program Standards and Accreditation Criteria & Guidance for Assessment,” which acknowledges the need to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…)”

7.       About 8 - 20% of child care providers contract CMV every year (Red Book, AAP, 2015) as compared to 1-4% of women (who have never had CMV) in the general population (CDC, 2018).

8.       Several resources have been created for child care providers:

o CDC flyers in English and Spanish:https://www.cdc.gov/cmv/resources/pregnant-women-parents.html

o CMV Training Module (University of Connecticut):https://youtu.be/k9MFAEYVuLs

o For Employers: Publication: Brown, N. J. (2019, November). "Occupational exposure to cytomegalovirus (CMV): Preventing exposure in child care and educational settings, including OSHA advisories." Ithaca, NY: Cornell University, ILR School.  Download video workshopThis publication/presentation is by Nellie Brown, MS, CIH, Certified Industrial Hygienist, and Director, Workplace Health and Safety Program, Worker Institute, Cornell University – ILR School. 

o See Utah's flier for child care providers:  https://health.utah.gov/cshcn/pdf/CMV/CMV%20What%20Childcare%20Providers%20Need%20to%20know.pdf

o The book, Model Child Care Health Policies, has a sample document to be signed by staff (paid or volunteer) to show “Acceptance of Occupational Risk by Staff Members,” which includes “exposure to infectious diseases (including infections that can damage a fetus during pregnancy)” (American Academy of Pediatrics, Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116).




MOTHERS IN NEW YORK


Angela Cote of Buffalo appreciates the current New York CMV testing law because it diagnosed why her daughter Elise failed her hearing test, giving her options for early intervention, but she wishes she had known about CMV before her pregnancy with Elise--especially since Angela had an occupational risk for it. "Not once have I ever heard of CMV or was told about CMV. I was a nanny so I was around children a lot as well as having my daughter, who was a toddler at the time I became pregnant with Elise. Not my OB or any other doctor mentioned or screened me for CMV to see if I had been exposed in the past."

Brandi Hurtubise, also from Buffalo, supports "Elizabeth's Law." Her second child Samantha was born with congenital CMV. Brandi told her story to the National CMV Foundation: "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." Lisa interviewed both Angela and Brandi on PAC-B TV: "Did You Know? - CytoMegaloVirus (CMV) - What Moms Wished They Knew" (May 7, 2021). 

Tabitha Rodenhaus of Kenmore (near Buffalo), the mother of Kaia born with congenital CMV, paints  #StopCMV rocks for the Saunders to leave along the Trail to help raise awareness. (See: Spectrum News, "Couple pushes for law in memory of their daughter". Includes interview with Dr. Sunil Sood.)

Edel Law of Tappan said, "Assembly Bill A7560 or 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."

Kristin Schuster of Canandaigua said her first child, Autumn, was born with congenital CMV in 2015. Like Lisa Saunders, Kristin never heard of CMV or that she was at increased risk for the disease because of her occupation. She said, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure." 

Jessica Keukelaar of Macedon, a child care provider while pregnant with Kyleigh, born with congenital CMV, was also unaware of her occupational risk for CMV. 

Mother Kelly Smolar Gerne, a mechanical engineer from Brooklyn, NY, wants to expand the CMV testing requirements in New York so more babies can receive early intervention during the critical first three weeks of life. She said, "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. Thankfully, the sole impact of congenital CMV is the loss of hearing in Alexis's left ear. 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 to get Alexis tested and treated early. I want to continue that forward so all babies in the State of New York will have the option for early intervention. 



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