Stop CMV, #1 Birth Defects Virus, in NY: Amend Public Health Law, Senate Bill S2816

Lisa Saunders with her new baby, Elizabeth, born with a severely damaged brain from congenital CMV in 1989. Elizabeth died in Nyack, NY, during a seizure at the age of 16 in 2006.

Dear New York Resident: 

Do you have a moment to help prevent the #1 birth defects virus among your family and friends? Every year in the U.S., approximately 4,000 babies are born permanently disabled by congenital cytomegalovirus (CMV), the leading viral cause of birth defects. If you want to help your community have healthier babies (while saving tax dollars), please contact your local senator (find at: https://www.nysenate.gov/find-my-senator) and assembly person (https://www.nyassembly.gov/mem/search/) and ask them to pursue the following amendments to Senate Bill S2816 that passed in 2018:

1) Mandate CMV prevention education, particularly for women at high risk such as pregnant mothers who have a toddler in group care, and child care providers/educators.

2) Require all newborns get tested for CMV to identify babies who may need to be monitored and treated for a possible progressive hearing loss.

Below is the letter I wrote to my senator. You are welcome to email any excerpt of it to your Assemblyperson and Senator.

Dear Senator of District 50:

I am writing to ask you to help prevent more children from suffering the disabilities caused by congenital CMV by amending Senate Bill S2816, passed in 2018, that "Requires urine polymerase chain reaction testing for cytomegalovirus [CMV] of newborns with hearing impairments" (https://www.nysenate.gov/legislation/bills/2017/s2816/amendment/original). The bill was authored by Assemblymember Linda B. Rosenthal, p. 212.873.6368, f. 212.873.6520. Chief of Staff is Lauren Schuster, Esq., at schusterl@nyassembly.gov.  

Pregnant mothers of toddlers in group care, early childhood teachers and child care providers are at increased risk for CMV, which can hurt their developing unborn children. Many are unaware of their occupational risk for CMV despite the current CMV law and OSHA's warnings:  "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).  

According to the CDC,  "about one out of every 200 babies is born with congenital CMV [cytomegalovirus] infection.  About one in five babies with congenital CMV infection will have long-term health problems" (https://www.cdc.gov/cmv/index.html).

While the current CMV law is great because it's helping babies who fail their newborn hearing test to receive a diagnosis of congenital CMV, enabling parents to get the appropriate early intervention, it appears that prevention education is still not being received by high-risk pregnant women. Also, most children born with congenital CMV go undetected initially because they pass their newborn hearing test but can go on to have a progressive hearing loss during the critical early years of language development. 

My proposed Senate Bill S2816 Amendments 

1) Include CMV information in the infectious disease training  that licensed child care providers and other early childhood educators are already receiving. See sample wording from Utah's H.B. 81 Cytomegalovirus Public Health Initiative that "requires the Department of Health to provide this information to...licensed child care programs and their employees (https://le.utah.gov/~2013/bills/static/hb0081.html).

2) ALL newborns should be tested for CMV to identify babies who should be monitored for a possible progressive hearing loss. Testing all newborns for CMV would mean adding it to the Newborn Screening Program (https://www.wadsworth.org/programs/newborn/screening)

(A recent price check in MA revealed costs of a saliva test for CMV was about $200 for Labco and $80-90 for Quest.)   

Purpose of these Amendments

a. To help prevent more cases of congenital cytomegalovirus (CMV) by educating women at high risk such as child care providers, early childhood teachers, and mothers who have a toddler in group care. "In the 1990s, the overall disease burden associated with congenital CMV infection was estimated to cost the US health care system at least $1.86 billion annually, with a cost per child of more than $300,000, compared with an estimated cost of $200,000 per child for rubella had it not been controlled by vaccination..." (Modlin et al, 2004).

b. To provide early intervention for newborns who initially pass their hearing screen but have a progressive hearing loss. 10-25 % of babies born with asymptomatic congenital CMV will develop sensorineural hearing loss by age 18 ("Hearing Loss in Children With Asymptomatic Congenital Cytomegalovirus Infection": https://pediatrics.aappublications.org/content/early/2017/02/14/peds.2016-2610)

Featured in the New York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often  Discussed is Gail J. Demmler-Harrison, MD, Professor, Baylor College of Medicine, a pediatric infectious diseases expert with over 30 years experience and expertise in diagnosis and management of children with congenital CMV at Texas Children’s Hospital. In her article, “CMV In Pregnancy: What Should I Know?", Dr Demmler-Harrison states, “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” (Texas Children’s Hospital, 2014). 

Dr Demmler-Harrison says, "Without universal newborn CMV testing, babies born with asymptomatic congenital CMV will often go undiagnosed because the hearing loss may be later in onset after birth for some children. Regarding followup for children born with congenital CMV, the first 5 years of life are the most important for careful followup of their hearing, because that is when most of the hearing loss will become evident for the first time. I would add that even babies with  symptomatic congenital CMV disease and asymptomatic congenital CMV with hearing loss at birth, not just the asymptomatic with normal hearing at birth who  may develop later onset hearing loss, would benefit from universal newborn screening for CMV  because they often go undiagnosed for months after birth and miss critical periods for antivirals and other interventions."

Balch, Brenda K., MD, AAP, Early Hearing Detection and Intervention Chapter Champion (CT) states, "If an infant is known to have passed the newborn hearing screen but has tested positive for CMV, the most recent JCIH [Journal of Early Hearing Detection and Intervention] statement recommends a full pediatric audiology evaluation by 3 months of age and then future monitoring every 12 months to age 3 or at shorter intervals based on parent/provider concerns” (article, "An Often Unknown Cause of Hearing Loss in Children: Understanding and Preventing CMV in the Educational Setting" (2019)).  

How can an asymptomatic baby born with congenital CMV receive an audiology evaluation if not all babies are tested for CMV at birth? Ontario solved that problem. As part of its Infant Hearing Program, "screening for CMV is offered for all babies born after July 29, 2019 as part of risk factor screening for PHL [permanent hearing loss]. Babies who screen positive for CMV will be referred to a pediatrician or Infectious Diseases Clinic for further testing" (https://www.newbornscreening.on.ca/en/page/congenital-cytomegalovirus).

Current NY CMV Law

The current CMV law is to be commended because it helped new mom, Angela Cote, discover why her child failed her hearing screen, giving her the option of providing early intervention for her daughter. Unfortunately, Angela didn't know about CMV prevention even though she had an occupational risk for it. She states: "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."

The 2018 NY CMV law requires some CMV education by the Department of Health, but it's been learned that caregivers/teachers are still not being educated about their occupational hazard for it and need to discuss this risk with their doctor or health department per recommendations from the American Academy of Pediatrics (AAP)  (I give AAP recommendations below my signature). 

HOWARD A. ZUCKER, M.D., J.D ,Commissioner of Health for New York State, stated in his monthly August 2018 letter: "People who have frequent contact with young children may be at greater risk of CMV infection. CMV can be present in especially high amounts in young children's saliva and urine for months after they become infected. While exposure to CMV may be difficult to avoid, particularly for those who have young children already, 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... "  (https://health.ny.gov/commissioner/letters/docs/2018-08.pdf). 

CMV by the Numbers
In 2018, in the U.S, 3,791,712 babies were born. with 1/200 born with congenital CMV (cCMV) x 1/5 disabled (or .001) by cCMV= 3,792 babies disabled by cCMV in the U.S. (https://www.cdc.gov/cmv/index.html).  

In 2018, In New York, the annual cost of caring for children disabled by cCMV can be calculated at 226,238 births in NY x .1% cCMV disabled = 226  babies X $300,000/year (Modlin et al, 2004) = $67,800,000 or over 67 million dollars annually to care for cCMV disabled children in New York. 

FREE CMV EDUCATION RESOURCES 

There are  several free educational tools, such as flyers from the CDC and presentations from Cornell University, to help the Department of Health follow the current NY CMV law and OSHA's action on CMV in the child care setting. These resources can be accessed here: https://cmvmass.org/workplace-prevention-for-employers/
Thank you in advance for any help you can provide to protect the health of unborn children!

Sincerely, 

Lisa Saunders

CMV Mom and Policy Advocate

216 Peakwood Lane, Apt 15

Baldwinsville, NY 13027

845-222-8593  

Producer of the PSA: "Had I known (about CMV)  

About me: I am a former licensed in-home child care provider unaware of my occupational hazard for CMV until it was too late to help my daughter Elizabeth born with a severely damaged brain from congenital CMV. I was stunned to learn after Elizabeth's birth that caregivers/teachers of toddlers were at greater risk for CMV. Elizabeth was deaf/blind, profoundly mentally impaired, and had cerebral palsy. She died at 16 during a seizure in 2006. If I had known about my increased risk for CMV during my child care licensing training, I would have been more careful to follow the hygiene guidelines, would not have tried to save time by using diaper wipes to clean hands and surfaces, and perhaps I would have only cared for children over two if I received a blood test showing I had no antibodies for CMV. The cost of caring for my daughter was considerable. In addition to requiring special education for 16 years,  she required several surgeries including spinal fusion, hip reconstruction, and tendon releases. She needed specifically fitted wheelchairs and continual refitting for orthotics as she aged. She wore hearing aids for a time and regularly received occupational, physical, speech and visual therapies. She had monthly EEGs to pinpoint the location of her seizures for possible brain surgery and she took several ambulance rides when her seizures went out of control. She was on several medications. After her death in 2006, I have worked tirelessly to prevent this from happening to others. In 2015, I helped Connecticut pass a CMV law, which was covered in Cornell Alumni magazine: "In Memory of Elizabeth: Her daughter’s death from a preventable disability spurs Lisa Avazian Saunders ’82 into action."  I am the author of  Help Childcare Providers Fight CMV: Protect Newborns from #1 Birth Defects Virus;  Once Upon a Placemat--A Table Setting Tale: Coloring Book and CMV Prevention Tool; and Anything But A Dog!: The Perfect Pet For A Girl With Congenital Cmv 

ADDITIONAL NOTES ON WHY AMENDED CMV LAW IS IMPORTANT

10 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) 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).      

3) American Academy of Pediatrics stated: “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) 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).

5) 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) 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    

 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). 

 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)

 

Utah's wording for CMV education (HB0081):

Highlighted Provisions:
             13          This bill:
             14          .    directs the Department of Health to create a public education program to inform
             15      pregnant women and women who may become pregnant about the occurrence of
             16      CMV, the transmission of CMV, the birth defects that CMV can cause, methods of
             17      diagnosis, and available preventative measures;
             18          .    requires the Department of Health to provide this information to:
             19              .    licensed child care programs and their employees;
             20              .    health care facilities licensed pursuant to Title 26, Chapter 21, the Health Care
             21      Facility Licensing and Inspection Act;
             22              .    child care programs administered by educational institutions regulated by the
             23      boards of education of this state, private education institutions that provide
             24      education in lieu of that provided by the public education system, or by
             25      parochial education institutions;
             26              .    child care programs administered by public or private institutions of higher
             27      education, if the care is provided in connection with a course of study or
             28      program, relating to the education or study of children, that is provided to
             29      students of the institution of higher education;

---

             30              .    child care programs administered at public schools by organizations other than
             31      the public schools if the care is provided under contract with the public schools
             32      or on school properties or if the public schools accept responsibility and
             33      oversight for the care provided by the organizations;
             34              .    child care programs provided by organizations that qualify for tax exempt status
             35      under Section 501(c)(3) of the Internal Revenue Code or that are provided
             36      pursuant to a written agreement with a municipality or county;
             37              .    child care programs provided at residential support programs that are licensed
             38      by the Department of Human Services;
             39              .    school nurses;
             40              .    health educators;
             41              .    health care providers offering care to pregnant women and infants; and
             42              .    religious, ecclesiastical, or denominational organizations offering children's
             43      programs as a component of worship services;

CMV and audiologic diagnostic evaluation 

According to the criteria set by the New York Newborn Screening Program, they test for diseases that  "identify babies with certain disorders, which without intervention, may permanently impact newborns and their families." This is why the Newborn Screening Program needs to add testing for CMV! Without universal newborn CMV testing, babies born with asymptomatic congenital CMV  often go undiagnosed because the hearing loss is often gradual.  10-25 % of babies born with asymptomatic congenital CMV will develop sensorineural hearing loss by age 18 ("Hearing Loss in Children With Asymptomatic Congenital Cytomegalovirus Infection": https://pediatrics.aappublications.org/content/early/2017/02/14/peds.2016-2610)

Babies born with congenital CMV benefit from early intervention. The article, "Universal newborn screening for congenital CMV infection: what is the evidence of potential benefit?" (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4494732/) states:  "We concluded that there is good evidence of potential benefit from nonpharmaceutical interventions for children with delayed hearing loss that occurs by 9 months of age. Similarly, we concluded that there is fair evidence of potential benefit from antiviral therapy for children with hearing loss at birth and from nonpharmaceutical interventions for children with delayed hearing loss occurring between 9 and 24 months of age and for children with CMV-related cognitive deficits...Overall, we estimated that in the United States, several thousand children with congenital CMV could benefit each year from newborn CMV screening, early detection, and interventions. "

The National CMV Foundation states: "We are advocating for congenital CMV to be added to the Recommended Uniform Screening Panel (RUSP), national recommendations that guide and support states in the development of their newborn screening programs. Screening every child for CMV at birth opens the door for early intervention, therapeutic support, the very best developmental outcomes possible" (petition indicates articles and testimonies by doctors and scientists in application favoring universal newborn CMV testing at: 

https://www.change.org/p/advisory-committee-on-heritable-disorders-in-newborns-and-children-achdnc-nominate-congenital-cytomegalovirus-cmv-for-uniform-newborn-screening-18a6356e-341a-4ddc-b84a-44303b4d23a2?signed=true).

ORGANIZATIONS THAT SHOULD WANT TO RAISE CMV AWARENESS

New York:

Newborn Screening Program: https://www.wadsworth.org/programs/newborn/screening David Axelrod Institute, Wadsworth Center, NYS Department of Health, nbsinfo@health.ny.gov, P: (518) 473-7552, F: (518) 474-0405

Early Hearing Detection and Intervention (EHDI) program: https://www.health.ny.gov/community/infants_children/early_intervention/newborn_hearing_screening/  

Early Intervention Program Memorandum 2003-3 - Newborn Hearing Screening : https://www.health.ny.gov/community/infants_children/early_intervention/memo03-3.htm

New York State Office of Children and Family Services (OCFS): https://ocfs.ny.gov/main/. The Professional Development Program: Provides child care training for licensing. Phone: (518) 442-6575, https://www.ecetp.pdp.albany.edu/index.aspx, ecetp@albany.edu. I addressed  my email to Sydney and wrote: "Bonnie Waite of the New York State Office of Children and Family Services (OCFS) told me the Early Childhood Education and Training Program provides the training for child care licensing..." 

National Organizations

• Child Care Aware: https://www.childcareaware.org/ (they published my article, "The Danger of Spreading CMV: How We Can Protect Our Children" (ChildCare Aware of America, 2017:  https://info.childcareaware.org/blog/the-danger-of-spreading-cmv-how-we-we-can-protect-our-children)  
• Office of Child Care: https://www.acf.hhs.gov/occ
  
• Early Childhood Development State and Regional Contacts - https://www.acf.hhs.gov/ecd/state-and-regional-contacts
• Early Care and Education Consortium – The Voice for Child Care Providers – http://www.ececonsortium.org/
• Early Childhood Teaching, Development and Learning from Head Start. – https://eclkc.ohs.acf.hhs.gov/hslc/tta-system/teaching
• Early Educator Central – Training for infant-toddler educators – https://earlyeducatorcentral.acf.hhs.gov/
• National Association for Family Child Care – www.nafcc.org
• National Association for the Education of Young Children – www.naeyc.org
• National Network for Childcare – www.nncc.org
• National Resource Center for Health and Safety in Child Care and Early Education – nrckids.org
• Best College’s list of best online bachelor’s in early childhood education programs – www.bestcolleges.com/features/best-online-bachelors-early-childhood-education/
•  Early Childhood Teacher unions: https://www.aft.org/earlychildhood
• National Perinatal Associate: http://www.nationalperinatal.org/
• MotherToBaby.org provides factsheet on CMV and mentions childcare workers: https://mothertobaby.org/fact-sheets/cytomegalovirus-cmv-pregnancy/pdf/
• Daycare.com: Cytomegalovirus webpage:  https://www.daycare.com/fastfacts/illness/cytomegalovirus.html
  

• OSHA: https://www.osha.gov/contactus/bystate/NY/areaoffice  
  
• U.S. Department of Health and Human Services (HHS):  https://www.hhs.gov/about/index.html

IDEAS: 

Media and Organizations: Tell them how CMV prevention can help prevent Covid-19. Here's a 2016 example of a child care organization that took my CMV info in child care and turned it into a blog post: http://www.southingtonearlychildhood.org/cmv-risks/ 

When I sent out this press release in 2018, https://www.pr.com/press-release/773215, an Australian publication, The Sector: Early Education News,  revised it for their country in the article, "Pregnant and working in ECEC [early childhood education and care]? Make sure you know the risks of contracting CMV" by Lyndsie Clark (January 6, 2019). Read more at https://thesector.com.au/2019/01/07/pregnant-and-working-in-ecec-make-sure-you-know-the-risks-of-contracting-cmv/?fbclid=IwAR3sg1ntfNLfQ50VOIjubuqdFZ6QUwv12QJa5JjewzE_PJIj4i2g_FFQsTI

Image 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; 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.