Congenital Cytomegalovirus: The Utah Policy and Public Health Experience

Congenital cytomegalovirus (CMV) is the most common congenital infection found in developed countries and can pass trans-placentally to the fetus resulting in multiple disabilities including hearing loss. In fact, CMV accounts for approximately 20% of pediatric hearing loss. Despite CMV causing more long-term problems and childhood deaths than Fetal Alcohol Syndrome, neural tube defects, and Down Syndrome, there is limited public awareness that the virus can be prevented by good hygiene practices.  Spurred by grassroots advocacy by parents with children affected by CMV sequelae, Utah lawmakers led the nation by passing HB 81in July 2013. This law mandates that the Utah Department of Health (UDOH), specifically the Early Hearing Detection and Intervention program, implement an education campaign that 1) targets pregnant women (or women who may become pregnant) and childcare providers about the prevention, transmission, occurrence, sequelae, diagnosis, and treatment of CMV and 2) notifies medical practitioners of the mandate to test all babies who fail two newborn hearing screenings for congenital cytomegalovirus prior to 21 days of age. To meet the 21-day window, Utah Newborn Hearing Screening protocols were revised so that all infants are screened and then re-screened (for those who fail the first screening) by 14 days, compared to the previous 30-day protocol. The CMV education efforts undertaken by UDOH were devised and implemented within a short timeframe, making stakeholder engagement imperative. This presentation will share Utah’s experience of taking a grassroots effort full circle, from parent advocacy, to legislation, to public health.