Asking NY Legislators to Stop #1 Birth Defects Virus, Cytomegalovirus (CMV)

New York CMV Advocacy Project 

Revise Public Health Law, Senate Bill S2816

to improve prevention and early treatment of congenital cytomegalovirus

The 2018 Senate Bill S2816, www.nysenate.gov/legislation/bills/2017/s2816/amendment/original, was authored by Assemblymember Linda B. Rosenthal

In 2020, I learned that mothers and child care providers of young children in New York are still not being educated about their "occupational risk" for CMV despite OSHA's warning to caregivers, the NY Department of Health's webpage on CMV, and the availability of several free educational tools from the CDC and Cornell University

More New York babies can avoid the disabilities caused by congenital cytomegalovirus (cCMV), saving taxpayers the costs of special education, lost wages, etc., by making the following amendments to S2816:

1) Provide more specific wording to help the Health Department fulfill its mandate already in place to provide 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. The risk of cCMV is significantly higher than other, better-known congenital diseases such as fetal alcohol syndrome and HIV/AIDS. Prevention measures are simple and include basic hygiene practices that involve avoiding contact with saliva and urine from babies and young children. cCMV infections can only be prevented by preventing CMV infection in pregnant women.

2. Make cCMV a reportable condition in New York (https://health.ny.gov/forms/instructions/doh-389_instructions.pdf). This will enable health department personnel to track affected babies and notify their pediatricians within the 3 week window to confirm that the infection is congenital. This in turn will compel the pediatrician to refer the baby with cCMV to a Pediatric Infectious Diseases Specialist, who would pursue a workup and consider antiviral treatment to lessen the long-term consequences. Moreover, early identification of cCMV has been found to reduce the functional impairments that stem from hearing loss.

FACT SHEET

A. What is Congenital Cytomegalovirus (cCMV)?

• CCMV is the most common congenital (present from birth) infection in the United States.

• Cytomegalovirus (CMV) is a type of herpesvirus and can be acquired at any point, often resulting in mononucleosis-like symptoms, or even no symptoms at all. While it is a type of herpesvirus, CMV is not the same as the sexually-transmitted disease genital herpes.

• cCMV is acquired in utero and can result in much more serious effects in the baby.

• cCMV is the leading infectious cause of birth defects and developmental disabilities, including: hearing loss, mental disabilities, physical disabilities, vision loss, seizures, cerebral palsy, and in the most serious cases, can result in death.(www.ncbi.nlm.nih.gov/pmc/articles/PMC3046747/).

• CMV by the Numbers: 


# 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 problems.(www.cdc.gov/cmv/index.html). 

# In 2019, 3,747,540 babies were born in the U.S (https://www.cdc.gov/nchs/fastats/state-and-territorial-data.htm). Therefore, an estimated 18,738 babies were born with congenital CMV and 3,748 babies had some disability caused by cCMV in the U.S.

# In New York, in 2019, 221,539 babies were born. Therefore, an estimated 1,108 babies were born with congenital CMV, with 222 babies being born permanently disabled by congenital CMV.

• New York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often  Discussed features Gail J. Demmler-Harrison, MD. She states on her medical blog: “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” (“CMV In Pregnancy: What Should I Know?,” 2014).

• Racial and ethnic minorities are particularly at risk for CMV: "CMV is more common among socially disadvantaged groups, and it clusters geographically in poor communities,"  states article, Geographic Disparities in Cytomegalovirus Infection During Pregnancy (Lantos et al, 2017).  "We found a high prevalence of CMV seropositivity in urban low-income neighborhoods among pregnant women, particularly among racial and ethnic minorities. Seronegative pregnant women from these communities might be at heightened risk for primary CMV infection." Another study concluded, "Significant racial and ethnic differences exist in the prevalence of cCMV, even after adjusting for socioeconomic status and maternal age" (Fowler et al.,Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection, 2018).

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

• There is a lack of Education and Awareness of cCMV and its Prevention Measures

• Only 9% of women are aware of CMV and its implications; the awareness in men is even lower (5%) (https://digitalcommons.usu.edu/jehdi/vol1/iss2/6/).

• cCMV is highly preventable with education and easy prevention measures (such as frequent hand-washing, avoiding sharing food, and avoiding contact with a child’s saliva) during pregnancy.

• 1.2% of expecting mothers who were given hygiene information on CMV and cCMV prevention and prospectively tested until delivery acquired a CMV infection, compared to 7.6% in a comparison group who did not receive prevention education or testing (https://pubmed.ncbi.nlm.nih.gov/26501119/).

• PROBLEM IN NEW YORK FOR CAREGIVERS/TEACHERS: When the New York State Office of Children and Family Services (the group that licenses child care providers) was contacted in 2020, it was learned that child care providers are still not receiving CMV information in their already mandated infectious disease training despite their occupational risk for CMV and the free CMV training resources available. Free resources include OSHA's warning to caregivers, the NY Department of Health's webpage on CMV, and educational tools from the CDC and Cornell University. The Professional Development Program in Albany, the organization that creates the training for child care licensing (Phone: 518 442-6575), could not be reached for comment.

• SOLUTION: Child Care Providers already receive infection control training to receive their licenses, so inserting CMV information into training shouldn't cost the state anything. In 2018, HOWARD A. ZUCKER, M.D., J.D , Commissioner of Health, stated: "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). 

• Although New York's Senate Bill S2816 requires public education, the Department of Health's website CMV page is rudimentary and was last reviewed in October 2011. It lists a few facts about the virus in general but does not address cCMV directly, moreover its statistics about CMV are incorrect and outdated. (www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm).

• Women of childbearing age have the right to be informed with information that can protect them during their pregnancies, yet are still uninformed. This has significant impact on women at high risk for CMV such as mothers with a toddler in group care and caregivers/teachers.

Medical Costs of cCMV

(See: 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.

APPENDIX I

FUTURE EFFORTS

Universal Screening of Infants for cCMV Allows for Early Detection & Interventions

cCMV screening and should be pursued as the next step in cCMV legislation. If cCMV is detected at birth, some babies can be treated with antiviral drugs and hearing loss, as well as other side effects, can be mitigated.

Failure to detect cCMV is common and has devastating consequences: cCMV goes largely undetected because a majority of affected babies are asymptomatic at birth. However, being symptom-free at birth does not necessarily exempt asymptomatic cCMV-positive infants from the disease's impacts later in life. Currently in New York, there is a statewide policy that infants are to be screened for cCMV if they fail their hearing screening. However, this targeted screening is insufficient. 10-25 % of babies born  with cCMV will have no symptoms at birth but will later develop hearing loss by age 18. Because hearing loss due to cCMV often worsens or develops later in childhood, a policy of targeted screening of infants who fail the newborn hearing screening fails to detect nearly half CMV cases. (www.ncbi.nlm.nih.gov/pmc/articles/PMC5260148/), (https://pediatrics.aappublications.org/content/early/2017/02/14/peds.2016-2610)

APPENDIX II

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…"

APPENDIX III

Current cCMV legislation in the United States

• 12 states have passed versions of cCMV legislation as of 2020: New York, Utah, Illinois, Iowa, Colorado, Hawaii, Idaho, Oregon, Texas, Tennessee, Connecticut, Virginia

• Utah mandates that the Utah DPH implement a public health education campaign to inform women who are pregnant or might become pregnant about cCMV, the risks associated with CMV, and the recommended prevention measures; also mandates an education campaign for medical and child-care professionals. See 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).

• New York, Illinois, Iowa,  and Utah require both education of pregnant women and targeted newborn screening.

• Colorado, Hawaii, Idaho, Illinois, Iowa, New York, Oregon, Texas, and Utah require their state to educate the public and professionals about cCMV.

• Tennessee requires health care providers to educate women of childbearing age

• Connecticut, Iowa, Illinois, New York, Utah, and Virginia requires each newborn that fails its newborn hearing screening to be tested for cCMV

APPENDIX IV

CMV EDUCATIONAL TOOLS

FLIERS/POSTERS

Centers for Disease Control and Prevention (CDC)
“CMV Fact Sheet for Pregnant Women and Parents
English: https://www.cdc.gov/cmv/downloads/cmv-parents-fact-sheet-508.pdf
Spanish: https://www.cdc.gov/cmv/downloads/cmv-parents-fact-sheet-sp-508.pdf

National CMV Foundation
Wall Poster “Are You Pregnant?”:
https://www.nationalcmv.org/NCMVF/media/ncmvf/download-content/CMV_Awareness-Flyer_11x17.pdf?ext=.pdf

PRESENTATIONS

For Caregivers/Teachers/Educators: 

"CMV Training Module Video": https://aural.rehab.uconn.edu/cmv-training-module/
(This work was supported by the AUCD and the LEND Pediatric Audiology Program made possible through a Cooperative Agreement with the Health Resources and Services Material Child Health Bureau (MCHB) grant awarded to the University of Connecticut A.J. Pappanikou Center for Excellence in Developmental Disabilities (Grant #3T73MC30115-01-01) in consultation with Child

For Employers:

1. 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. Available from: https://digitalcommons.ilr.cornell.edu/conference/45/

2. Vimeo: https://vimeo.com/450219803

3. Download video workshop: https://vimeo.com/user43999427/download/450219803/e5b7be27db

The above publication/presentation is by Nellie Brown, MS, CIH, Certified Industrial Hygienist, and Director, Workplace Health and Safety Program, Worker Institute, Cornell University – ILR School. The information in this training program was originally developed for The Center for Occupational & Environmental Medicine at the Erie County Medical Center (ECMC), 462 Grider St., Buffalo, NY 14215.  Permission to make this training program available online granted by The Center for Occupational & Environmental Medicine. For further information, or to ask about a Q and A over Zoom, contact Nellie Brown at: njb7@cornell.edu.

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For more information:

Sunil K. Sood, MD

Chair of Pediatrics, South Shore University Hospital

Attending Physician, Infectious Diseases, Cohen Children's Medical Center

Professor, Zucker School of Medicine at Hofstra/Northwell

Nancy Stellato MSN RN

Clinical Research Nurse

Division of Infectious Diseases

Cohen Children’s Medical Center

Lisa Saunders, CMV Mom and Advocate

New York CMV Project 

Baldwinsville, NY

LisaSaunders42@gmail.com