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1 IN 200 BABIES

IS BORN WITH CMV.

Over 3,000 babies are born with

CMV (cytomegalovirus) in California every year.

EDUCATION CAN SAVE BABIES FROM CMV

CMV is commonly found among healthy children who are at high risk for catching CMV from their peers. Studies show that as many as 75% of toddler-aged children have CMV in their saliva or urine. Contact with the saliva or urine of young children is a major cause of CMV infection among pregnant women, especially mothers, daycare workers, preschool teachers, therapists, and nurses.

Women who are pregnant or are planning to become pregnant need to be educated about CMV so that they can practice the following recommended CMV prevention behaviors to lessen their risk of catching CMV:

Avoid contact with saliva when kissing a child
Do not share food, utensils, drinks or straws
Do not put a pacifier in your mouth
Do not share a toothbrush
Wash your hands often with soap and water, especially after wiping a young child’s nose or mouth, changing diapers, or feeding a young child

IMPORTANT

INFORMATION ABOUT CMV

CMV (cytomegalovirus) is a common virus in the same virus family as chicken pox.

Most people infected with CMV will show no signs or symptoms.

Pregnant women can unknowingly become infected with CMV and can pass it to their baby during pregnancy.

When a baby is born with CMV, it is referred to as congenital (meaning from birth) CMV.

CMV is the most common viral cause of birth defects and developmental disabilities in the United States.

1 in 200 children is born with CMV and 1 in 1000 children will be permanently disabled by CMV.

CMV causes more birth defects and disabilities than Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.

Babies born with CMV may experience or develop hearing loss, vision loss, cerebral palsy, mental and physical disabilities, behavior issues, seizures, and death.

CMV can either cause symptoms when a baby is born or problems can arise months or years after birth.

91% of women are unaware of CMV.

OB/GYNS do not educate their pregnant patients about CMV and CMV prevention behaviors.

About CMV

Education

NEWBORN SCREENING FOR CMV

Congenital CMV is more common than the combined metabolic or endocrine disorders currently in the United States core newborn screening panel. But congenital CMV can only be diagnosed if the virus is found in a newborn's urine or saliva during the first three weeks of life. If a baby is tested after three weeks, it is difficult to determine whether the child was infected with CMV during pregnancy or after birth (acquired CMV). Children born with congenital CMV who go undiagnosed during these crucial first few weeks of life may go on to have developmental or medical problems later in life with no diagnosis of origin.

Newborn CMV screening has significant potential for improving children’s functional outcomes (including language and educational development) through early detection and intervention. This CMV screening test is simple and painless and can be taken using either a urine or saliva sample. Many insurance companies report that they cover this CMV testing.

Because CMV is the leading non-genetic cause of childhood hearing loss, newborns who test positive for congenital CMV need to be evaluated by an audiologist as soon as possible. CMV-related hearing loss is progressive in nature and it's recommended that all babies born with congenital CMV have a hearing re-assessment every three months in the first three years of life, and then every six months until they turn

six years old.

Screening

Legislation

LEGISLATION AROUND THE COUNTRY

In 2013, the Utah legislature became the first state to introduce CMV legislation and successfully passed the Cytomegalovirus Public Health Initiative. This law directs the Utah Department of Health to create a public education program to inform pregnant women, and women who may become pregnant, about the occurrence of CMV, the transmission of CMV, the birth defects that CMV can cause, methods of diagnosis, and available preventative measures. This law also directs medical practitioners to test infants who fail newborn hearing screening for congenital CMV and inform the parents about the possible birth defects that CMV can cause.

Since 2013, Connecticut, Hawaii, Idaho, Illinois, Iowa, Oregon, Texas, and Tennessee have also passed similar CMV education and screening legislation and bills have been introduced in Maine, Michigan, Minnesota, New York, and Pennsylvania. Parents and professionals in several other states, including Alaska, Arizona, California, Florida, Georgia, Mississippi, North Carolina, Ohio, Oklahoma, South Carolina, Washington, and Wyoming are currently working with officials within their state to create and expand CMV education and screening programs.

In January of 2018, the California Assembly introduced CMV legislation, AB1801 - Establishing a Commission on Cytomegalovirus Public Education and Testing. This bill would require California's Department of Health Care Services to establish a commission which would review and provide recommendations to issues surrounding CMV. By creating this commission, California will gather the most contemporary evidence-based and data-driven information which can be used to make the appropriate policy recommendations in order to combat this serious virus. AB 1801 represents a first and important step for California to join this national trend.

PROJECT STATUS AND UPDATE

AB1801 passed unanimously in both the Assembly and Senate late August 2018, but was rejected by the Governor in September of 2018 due to the high-costs associated with establishing a new commission. In response to this action, representatives from the California CMV Project have joined with the National CMV Foundation and several of its partner organizations to submit a nomination to have congenital CMV added to the Recommended Uniform Screening Panel (RUSP) in late March of 2019.

Administered by the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), part of the Department of Health and Human Services, the RUSP is a list of 35 core conditions and 26 secondary conditions that all newborns in the US are recommended to be screened for. Submission to the RUSP is a critical first step toward our goal of having CMV added to state newborn screening programs across the United States. “Congenital CMV is the number one cause of congenital abnormalities in newborns,” said Dr. Stanley Plotkin, M.D. “Largely ignored as a public health problem, development of effective screening tools and therapies make it possible to support positive health outcomes for thousands of newborns.”

Most states also have their own process for evaluating which diseases are included on their newborn screening panels, so advocacy at the state level will continue to be important even if CMV is added to the RUSP. "We’ve made significant progress over the last 30 years in the development of screening tools and therapeutic advances for treating babies with congenital CMV,” said David Kimberlin, Professor of Pediatrics and Co-Director of the Division of Pediatric Infectious Diseases at the University of Alabama at Birmingham. “The time is right to begin testing every child.”

The RUSP application and more information regarding its submission can be found here: https://www.nationalcmv.org/resources/blog/april-2019/national-cmv-foundation-nominates-congenital-cmv-f

Impact

IMPACT OF CMV IN CALIFORNIA

502,879 - babies born in California each year (2014 - CDC)
3,352 - babies born in California with congenital CMV each year (estimate)
670 - babies born permanently disabled in California by congenital CMV each year (estimate)

$1.9 billion/1,900,000,000 - national annual cost impact of congenital CMV (1990s - IOM)
$300,000 - national annual average cost per child born with congenital CMV (1990s - IOM)

$201,000,000 - annual cost impact of children permanently disabled by CMV in California (estimate)
$374,630,000 - annual cost impact adjusted for inflation (2017 estimate - BLS)

These figures do not reflect indirect costs or monetary estimates of intangible costs, which would be needed for the preparation of a cost-benefit analysis. (CDC)

CALIFORNIA CMV STORIES

Alan - Palo Alto

Associate Professor in Otolaryngology and Pediatrics Director, Stanford University

Because I have a life long interest in caring for children with hearing loss, I have personally worked with many children with disabilities who could have benefited from early intervention services if their disabilities had been identified sooner.

Kathryn - Livermore

Born with congenital CMV

While there were many unknowns about how CMV would affect Kathryn, we continued to go to various doctors appointments and physical therapy. Profound hearing loss continues to be the major (or only?) affect of CMV.

Eric - Gasquet

Born with congenital CMV

Eric is a spastic quadriplegic who is non-verbal. At birth he was diagnosed with congenital CMV due to petechiae, low platelets, brain calcifications, etc. He is also diagnosed with the most beautiful smile and warm heart by everyone who loves him.

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Stories

Research

RESEARCH ABOUT CMV

Long-term outcomes of children with symptomatic congenital cytomegalovirus disease

"In the United States, symptomatic congenital CMV disease is estimated to affect ∼ 2000–3000 newborns annually. A laboratory-confirmed diagnosis of congenital CMV disease in the first month of life is critical for implementing appropriate clinical management, including administration of antivirals for eligible infants. Most cases of symptomatic congenital CMV disease likely remain undiagnosed because they present with mild or nonspecific signs."

View Paper

Hearing Loss in Children With Asymptomatic Congenital Cytomegalovirus Infection

"The burden of CMV-related SNHL is substantial considering the potential impact of SNHL on children’s development and academic achievement and their need for ongoing audiologic monitoring and interventions. Newborn screening for congenital CMV infection has the potential to identify children at risk for CMV-related SNHL who currently go unrecognized and who might benefit from earlier intervention."