Media and Government Professionals

The CDC says that congenital CMV "causes more long-term problems and childhood deaths than Down Syndrome, Fetal Alcohol Syndrome, and Neural Tube Defects". The March of Dimes calls CMV "the most common congenital (present at birth) infection in the United States". Everyone agrees: CMV is an emerging public health issue that needs attention and energy to save thousands of children from death and disability. Only 14% of women are aware of CMV, this is a preventable virus, and time is of the essence. Help us raise awareness and work towards long-term, lasting solutions for congenital CMV.

Reporters and Media Professionals

What is CMV--why haven’t we heard of this?

Be in front of this story and bring it to your viewers or readers with assistance from Stop CMV - The CMV Action Network. Help break this crucial health news event and inform your readers and viewers about the importance of healthy pregnancies and CMV prevention. We have prepared quotes, photos, and experienced parents around the country ready to be interviewed about congenital CMV. Visit our Media Kit for more information or contact media@stopcmv.org to get started on your story about CMV.

CMV Talking Points

• Cytomegalovirus (CMV) is a very common virus.
• Most people who get CMV have no symptoms and may not even know that they have been infected.
• If a woman gets CMV while she is pregnant, it can cause disabilities in the baby, which is called congenital CMV.
• According to the CDC, 1 in 150 children is born with congenital CMV, which puts them at risk for deafness, blindness, cerebral palsy, mental and physical disabilities, and seizures.
• CMV causes more disabilities than Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.
• CMV is a very common virus in healthy young children. Up to 70% of healthy children between 1 and 3 may have CMV.
• CMV can be transmitted to pregnant women via bodily fluids, including saliva, urine, tears, blood, mucus, etc.
• CMV can be prevented by handwashing, especially after contact with a diaper or oral secretions.
• CMV can also be prevented by avoiding contact with saliva when kissing a child.
• A 2008 study found that only 14% of women in the US had heard of CMV.
• A 2007 survey found that only 44% of OB/GYNs counsel their patients about CMV.
• Women are not routinely screened for CMV during pregnancy.
• Babies are not routinely tested for CMV after birth.
• CMV is more common that the disorders currently in the United States core newborn screening panel.
• CMV vaccines are still in the research and development stage.
• CMV receives no dedicated federal funding.
• We need the public's engagement and support as we try to make change to stop CMV.

Government and Policy Professionals

What patient education programs are in place about CMV?

There are none. Currently, women are not being educated about CMV during pregnancy. The American College of Obstetricians and Gynecologists (ACOG) and the Centers for Disease Control and Prevention (CDC) recommend that OB/GYNs counsel women on basic prevention measures to guard against CMV infection. But according to a 2007 survey, fewer than half (44%) of OB/GYNs reported counseling their patients about preventing CMV. This could be due to the perceived rarity of congenital CMV cases, the lack of congenital CMV diagnoses within their practice because of the lack of CMV screening, or just a simple oversight.

Through CMV awareness programs, Stop CMV works with media and health care professionals to ensure that CMV prevention information reaches all women of childbearing age... more info

Can CMV be prevented?

Yes. CMV is a preventable, common virus found in young children--it is estimated that up to 70% of healthy children between 1 and 3 years of age may have CMV. CMV can be transmitted to pregnant women via bodily fluids, including saliva, urine, tears, blood, mucus, etc. To prevent CMV, practice frequent handwashing with soap and water after contact with diapers or oral secretions, especially with a child who is in daycare or interacting with other young children on a regular basis. Other basic prevention measures to guard against CMV include not kissing young children on the mouth and not sharing food, towels, or utensils with them... more info

Is there a CMV vaccine?

Not yet. CMV vaccines are still in the research and development stage. Many experts believe that a CMV vaccine is possible within the next 10 to 20 years, but a CMV vaccine is unlikely to occur without the awareness and support of the general public, the pharmaceutical industry, and the federal government.

Fortunately, the Institutes of Medicine (IOM), deemed congenital CMV a top priority for medical research and development. In 1999, the National Institute of Medicine (IOM) reviewed 26 conditions with the potential for vaccine prevention and ranked different candidate vaccines from Levels I-IV (highest to lowest) based on cost impact and Quality of Life Adjusted Year (QALY) saved. A congenital CMV vaccine, given to 12-year-olds, was ranked the first priority in the Level I group because of cost savings as well as the human suffering that would be alleviated by stopping CMV.

There are many pharmaceutical industry-sponsored clinical trials for CMV vaccines, but these focus on other at-risk populations, including HIV patients and organ transplant patients. While important, data from these CMV vaccine trials cannot be applied towards a congenital CMV vaccine. For a congenital CMV vaccine, there have been approximately 10 phase 1 trials, 2 phase 2 trials, and no phase 3 trials to date.

To address these concerns, Stop CMV has launched the first national congenital CMV grassroots advocacy program, helping parents, families, and supporters actively engage in efforts to raise awareness about congenital CMV to promote public awareness and advance CMV research... more info

Are pregnant women or babies currently screened for CMV?

No. The Centers for Disease Control and Prevention (CDC) do not recommend routine maternal screening for CMV infection during pregnancy because there is no test that can definitively rule out primary CMV infection during pregnancy. Occasionally the need for CMV testing arises when abnormalities that may be caused by CMV or other infectious diseases are seen on ultrasound.

Likewise, infants are not routinely tested for CMV after birth yes congenital CMV is more common that the combined conditions and disorders currently screened for in the United States core newborn screening panel. Unfortunately, congenital CMV cannot be accurately diagnosed if the newborn is tested more than 2-3 weeks after birth. After 3 weeks, tests won't be conclusive for congenital CMV because the baby could have contracted the infection through nursing or by exposure to siblings or others who may be shedding the virus.

Are there any treatments for CMV?

Yes. Recent studies suggest that CMV hyperimmune globulin (IVIG) treatments may reduce the risk of congenital infection and disease when given to pregnant women experiencing a primary CMV infection. Additionally, Ganciclovir and Valganciclovir are antiviral treatments that may be beneficial to a child born with symptomatic congenital CMV and may prevent hearing loss and improve head and brain growth. They can also help combat immediate medical concerns caused by CMV, such as thrombocytopenia (low platelets), organ failure (most commonly spleen and/or liver), hepatitis, and pneumonitis.

Is there any legislation or funding dedicated to CMV?

Not yet. Congenital CMV does not receive dedicated federal funding at this time. Fortunately, people who realize the need for additional information have found ways to address this issue. By using CDC general funds and external grants, small directed-research activities have been funded, including:

• Study of the natural history of CMV infection among women
• Surveys of women’s knowledge, attitudes, and behaviors related to congenital CMV
• Laboratory assessments of CMV persistence in the environment and the efficacy of hand washing for removing CMV from hands
• Study of long-term outcomes in a cohort of children born with congenital CMV

How can state and federal governments help?

State government agencies and officials can help stop CMV in the following ways:

• Contact us with questions or request a legislative kit
• Provide a link to Stop CMV on your website
• Become a Stop CMV official partner
• Review your current literature to ensure CMV information is presented accurately
• Provide easily accessible CMV information on your website or printed materials
• Assess current information sharing activities and find ways for CMV information to be integrated
• Determine if additional information pathways could be developed to highlight CMV data
• Seek opportunities to increase the level of discussion about CMV, via workshops, mother/baby expos, and other venues
• Assign high-level staff the responsibility to increase and expand CMV information sharing
• Stay connected to Stop CMV to track current and future events

Federal government agencies and officials can help stop CMV in the following ways:

• Contact us with questions or request a legislative kit
• Ensure that you and your colleagues are well informed of the state of CMV (prevalence, dangers, preventative measures)
• Ask appropriate health constituents about their understanding of CMV and how they can help distribute information through their channels
• Recommend that your state agencies understand or elevate the importance of sharing information about CMV, follow-up on that recommendation to see that they’re responding accordingly
• Urge your state agencies to become a Stop CMV official partner
• Seek opportunities to share CMV information with other health staffers
• Work toward opportunities to help legislate in the interest of CMV awareness
• Work toward opportunities to help legislate in the interest of CMV prevention
• Work toward opportunities to help legislate in the interest of CMV research
• Stay connected to Stop CMV to track current and future events