Protect Babies from Congenital CMV: Pass CMV Legislation--Share Fact Sheet with Policy Makers

Lisa Saunders, a mother who found out too late she was at risk for passing CMV to her unborn child, is seen here speaking at the Centers for Disease Control and Prevention in Atlanta in 2008.

What is cytomegalovirus (CMV)? 

ONE-PAGE CMV FACT SHEET 

Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. It is the leading viral cause of birth defects passed from mother to unborn baby (Carlson et al., 2010). Congenital (meaning present at birth) CMV can cause disabilities in unborn babies such as hearing and vision loss, mental impairment and cerebral palsy. Disabilities from congenital CMV "exceeds those from the fetal alcohol syndrome, spina bifida, and childhood infections..."(Boppana and Fowler, 2017). 

According to the CDC:

* Approximately 1 in 200 children is born with congenital CMV (cCMV) infection.
* One in five babies [4,000 babies annually] with cCMV infection will have long-term health problems (4 million annual births/200 born with cCMV/5 sick or long-term health problems = 4,000 disabled by cCMV).

Is this the “kitty litter” disease? No, that is toxoplasmosis, which causes fewer birth defects than cCMV (Lopez,et al., 2000).

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.

Why don’t doctors warn women of childbearing age about congenital CMV?

Fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection (ACOG, 2007).

—  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,” said OB-GYN Laura Riley, M.D., director of infectious disease at Massachusetts General Hospital 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)

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 article, “Educate 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, et al., 2004).

Annual cost of caring for children disabled cCMV by state? 
In 2016, 3,945,875 babies were born in U.S. with .1% disabled by cCMV = 3,945 babies.  In Connecticut in 2016, the annual cost of caring for children disabled by cCMV can be calculated at 36,015 births x .1% cCMV disabled = 36 babies X $300,000/year = $10,800,000 or over 10 million annually. 

Which women are at greatest risk for contracting CMV? 
According to the 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..."

1.      Parents of children in day-care centers are at increased risk for contracting CMV (Pass et al, 1986). “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, in the Ottawa Citizen (Payne, 2018).

2.      Toddlers can spread CMV to each other, their child care providers and families. "Up to 70% of children ages 1 to 3 years in group care settings excrete the virus...With regard to child-to-staff transmission, studies have shown increased rates of infection with CMV in caregivers/teachers ranging from 8% to 20%” (Caring for Our Children, American Academy of Pediatrics (AAP), et al, revised 2017).

Women’s knowledge of CMV: 
Recent surveys show that most women have never heard of CMV (Doutre et al, 2016)—including child care providers (Thackeray and Magnusson, 2016). Many caregivers acknowledge using diaper wipes to clean, but diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014).

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 2015: “In each report, the efficacy of hygienic precautions has been > 75%...” (Adler, 2015).

###

BARRIERS and SOLUTIONS to Getting CMV Legislation Passed 

By Lisa Saunders (LisaSaunders42@gmail.com) of Connecticut, CMV mom and  leader of Child Care Providers Education Committee, National CMV Foundation

What happened in Connecticut

January 2014:    HB 5147 was introduced-An Act Concerning Newborn Screening for Globoid Cell Dystrophy and Cytomegalovirus and Establishing A Public Education Program For CMV.  It passed the Public Health Committee and House, but was not voted on by the Senate before the close of session (first year cost of 40, 000 was a “deal breaker”).

January 2015:   HB 5525 CMV legislation proposed again. In March, Public Health Committee passed it after CMV education component was removed because of cost. In May, targeted newborn screening passed with bipartisan support.

BARRIERS TO GETTING LEGISLATION PASSED

·        CMV is unknown: Since legislators have never heard of CMV, they think if it was a problem, OB/GYNs would say so. 

·        Cost: What is a CMV testing law going to cost our state, citizens, and insurance companies?

·        Some doctors and Early Education Teachers/Child Care Leaders may not support bill: Some medical professionals oppose public policy and legislation mandating medical practice. The daycare industry may worry about frightening  away their workers.

·        Extra work: Some state departments and programs don’t want the extra work of providing CMV prevention education and training—especially if there is no funding for it. 

·        Finding legislators to introduce the bill: It is hard to introduce a bill on a problem very few have heard of. Legislators worry about getting enough support such as people testifying at the hearing, writing letters, calling legislators and visiting their offices. Many legislators don’t understand why just telling their their state to educate women doesn’t produce a real, lasting change in awareness. 

SOLUTIONS

Find an advisor to help guide you:  You may have connections to an organization eager and Corporate Affairs willing to help you.

Streamline educating legislators: Create a one-page CMV fact sheet  (see above) telling them what they quickly need to know to convince others. Provide a pocket folder that includes back-up documents such as the bills passed in other states (find them at www.nationalcmv.org/cmv-research/advocacy), the new CMV flyers from CDC:
 (Spanish/English), flyers/posters from the National CMV Foundation (so they see educational materials already exist), relevant newspaper articles and scientific studies.

Attract Media Attention: Give yourselves a name such as [your state name] CMV Advocacy Project. Create a Facebook page with your group name on it and complete the “About” section. Sent media releases to TV/radio/newspapers quoting doctors and parents. Send resulting links of coverage to all the legislators—you never know who will really care.

Get your state’s (or county’s) health department behind you: You may get resistance because it means work for them if it passes, but remind them that staff such as child care providers are at increased risk for CMV. Under the Occupational Safety and Health Act of 1970 (OSH Act), workers have the right to “receive information and training about hazards.”

Stress the Benefits: You may be apposing medical professional groups so you must articulate the benefits to legislators. According to Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics (AAP) Early Hearing Detection and Intervention (EHDI) Chapter Champion, our CMV “testing protocol allows for a more timely diagnosis of the etiology of the infants hearing loss and is less expensive than imaging and genetic testing.” A CMV testing law will also “increase healthcare workers’ and parents’ awareness of CMV research and possible intervention strategies for congenital CMV.”

 UNDERSTAND THE LIMITS AND CONCERNS OF TARGETED NEWBORN SCREENING

·        In Connecticut, our law mandates testing only for infants who do not pass their hearing screening. Dr. Balch states, “We know that hearing loss may be late onset or progressive and therefore infants with a very mild hearing loss at birth or those with late-onset hearing loss due to CMV may be missed.

·        “After 3 weeks of age, the PCR for CMV on saliva and urine and the urine culture cannot differentiate between cCMV and CMV acquired postnatally.

·        “Breastfeeding in close proximity to the collection of the saliva sample may skew the results.

·        “There is no drug licensed to treat cCMV, although studies are ongoing using antivirals, such as ganciclovir and valganciclovir.”