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Vivian Act Introduced in Legislature to Promote Education, Awareness and Detection of Congenital CMV Virus

Thursday, May 11, 2017

ST. PAUL – This week, Representative Kelly Fenton, R-Woodbury, and Senator Karin Housley, R-Stillwater, introduced the Vivian Act which will promote education, awareness and early detection of congenital cytomegalovirus (CMV), a virus that affects around one in every 150 babies born each year and is the most common congenital viral infection in the United States, according to the National CMV Foundation. Of those children, approximately one in five babies will be sick or have long-term health problems including hearing loss, vision loss, intellectual disability, small head size, lack of coordination, weakness of muscles and seizures. The legislation is named after Vivian Henrikson, a three-year old born with congenital CMV who developed cerebral palsy and deafness.

“We are advancing the Vivian Act so that parents and children born with congenital CMV like Vivian can get the help they need right away, leading to better long-term outcomes,” said Rep. Fenton. “Our legislation makes evidence-based information available to health care practitioners and expectant mothers, and recommends doctors consider testing babies who do not pass the newborn hearing screening which is a common early indicator of CMV.”

The Vivian Act requires the Minnesota Department of Health to make up-to-date and evidence-based information available to health care practitioners, expectant parents and parents of infants about congenital CMV. That information includes recommendations to test babies who fail their newborn hearing screens, as well as information on the transmission of CMV from mother to child, birth defects caused by CMV, preventative measures, and resources available for families of children born with CMV.

“The Vivian Act is bipartisan legislation that puts children, mothers and families first,” said. Sen. Housley. “We are talking about this now to promote awareness and believe this bill is a positive step to help Minnesota families and kids like Vivian affected by congenital CMV.”

More children will have disabilities due to congenital CMV than other well-known infections and syndromes including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida and HIV/Aids, according to the National CMV Foundation. Early treatment includes anti-viral medication and therapy.