New York CMV Advocacy Project
Revise Public Health Law, Senate Bill S2816
to improve prevention and early treatment of congenital cytomegalovirus
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
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.
###
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