Advocacy
CCMV screening signed into law
Congenital cytomegalovirus (cCMV) affects one in 200 babies born in the U.S. and is the most common cause of permanent, non-genetic hearing loss in infants — yet 90 percent of parents have never heard of it. A new bill (SB292) passed earlier this year aims to provide education and promote early diagnosis for this treatable disease.
The founding physician of the Florida CMV Collaborative, Cedric Von Pritchett, MD, pediatric otolaryngologist and medical director of the Cochlear Implant Program at Nemours Children’s Hospital, Florida, helped to introduce the legislation. Dr. Pritchett and two other Nemours Children’s physicians testified before the Florida Legislature in support of the bill that requires all babies who fail a newborn hearing screening to be tested for cCMV. Earlier diagnosis means earlier intervention, including anti-viral medication, therapy, hearing aids or cochlear implants. Undiagnosed cCMV can result in permanent hearing loss — even deafness. Late diagnosis can result in irreversible developmental delays that impact the child’s long-term health and well-being. The new requirements help ensure vulnerable children can receive the best start in life.
Maddie T
Diagnosed with cCMV
Patient Ambassador
“After six months, doctors were finally able to diagnose Maddie’s CMV from her newborn blood sample that was kept on file at the Department of Health. She received cochlear implants at age 1 and has made massive developmental gains. We hope this new law will allow families to receive diagnosis and treatment sooner.”
Molly T., Maddie’s mom
