Monday, May 29, 2017

One-Page CMV Fact Sheet for Policy Makers

(Image of Elizabeth Saunders age eight. Elizabeth was born with congenital cytomegalovirus in 1989)

or see below

What is cytomegalovirus (CMV)? 
Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. It is the leading birth defects virus passed from mother to unborn baby. Congenital (meaning present at birth) CMV can cause disabilities in unborn babies such as hearing loss, mental impairment, and cerebral palsy. Congenital CMV (or cCMV) causes more disabilities than Down syndrome, fetal alcohol syndrome, spina bifida, and pediatric HIV/AIDS (   According to the CDC:

  • Approximately 1 in 200 children is born with cCMV infection.
  • One in five babies [about 4,000 babies annually] with cCMV infection will have long-term health problems.

Is this the “kitty litter” disease? 
No, that is toxoplasmosis, which causes fewer birth defects than cCMV.

How can CMV be avoided?
  • ·         Wash hands often with soap and water for 15-20 seconds, especially after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.
  • ·         Use soap and water or a disinfectant to clean hard surfaces that have been contaminated by secretions.
  • ·         Don’t kiss young children on the lips or share food, drinks, or eating utensils with them.
SUMMARY: The CDC "suggests that pregnant women reduce their risk of CMV acquisition during pregnancy using simple hygienic precautions but this suggestion is not often followed” (Adler, 2015). 

Why don’t doctors routinely warn women of childbearing age about congenital CMV?
Fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection.

  • Don’t want to frighten their patients: "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.” (OB/GYN quoted in FitPregnancy magazine, June/July '08).
  • In 2015, the American College of Obstetricians and Gynecologists (ACOG) stated that their patients will consider prevention guidelines difficult to implement—“especially if they are told not to kiss their toddlers on the mouth — a possible route of transmission.”(CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed, New York Times, 2016)

How many women know about congenital CMV? 
Only 9 % of women surveyed about CMV heard of it (Doutre et al., 2016).

What about a vaccine against CMV? Researchers have been working on a vaccine against HCMV (human cytomegalovirus) for years. One reason for delay in successful development is “there has been insufficient education about the problem of HCMV infection…”

What can we do to protect our children from CMV? 
Educate the public! “Despite being the leading cause of mental retardation and disability in children, there are currently no national public awareness campaigns to educate expecting mothers about congenital CMV,” states Clinical Advisor articleEducate pregnant women to prevent congenital CMV” (2014). Pass a bill similar Utah’s H.B 81 (2013) requiring cCMV prevention education plus testing newborns for cCMV if they fail hearing screen tests so their families can be educated about early intervention services and treatment options. To test for CMV, a saliva or urine sample is collected from the newborn and sent to a laboratory.

Cost of a CMV bill? 
Example: in 2014, Connecticut put CMV prevention education at $40,000 first year. Newborn hearing tests are already required in CT (and most states) and insurance pays for CMV testing (estimated at $150) if baby fails the hearing screen.

What is the annual cost of caring for children disabled by cCMV in the U.S.?
$1.86 billion annually, with a cost per child of more than $300,000, is the estimated cost of congenital CMV to the US health care system” (Modlin, Arvin et al., 2004).

Annual cost of caring for children disabled cCMV by state? 
In 2015, 3,978,497 babies were born in U.S. with .1% disabled by cCMV = 3,978 babies.  Example state: in 2015, Connecticut’s annual cost of caring for children disabled by cCMV can be calculated at 35,746 births x .1% cCMV disabled = 36 babies X $300,000/year = $10,800,000 or nearly $11 million annually.  

Which women are at greatest risk for contracting CMV? 
According to the CDC, "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..."
1.      Parents of children in day-care centers are at increased risk for contracting CMV (Pass et al, 1986).
2.      Day-care workers are at greater risk (Joseph, et al., 2006). Caregivers/teachers should be told about CMV because of increased probability of exposure (American Academy of Pediatrics et al.. 2011). “Providers do not know how to appropriately sanitize surfaces ...” Many providers use diapers wipes to clean a surface. Diaper wipes do not sanitize (Thackeray et al., 2016).

Will it make a difference if women are educated on CMV prevention? Yes, according to the New York Times, “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)” (Saint Louis, 2016). Five CMV prevention education studies published between 1993 and 2015 were analyzed in the article, Prevention of Maternal–Fetal Transmission of Cytomegalovirus: “In each report, the efficacy of hygienic precautions has been > 75%...For seronegative pregnant women who are at high risk because of exposure to a young child in the home or in large group childcare, hygienic precautions are simple, inexpensive, and highly effective” (Adler, 2015). 
* Fact sheet prepared by Lisa Saunders of Mystic, CT, parent representative of the Congenital CMV Foundation. Bibliography found at

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