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Singleton, Kean Bill to Require Spinal Muscular Atrophy Screenings for Newborns Signed into Law

Trenton – Legislation sponsored by Senator Troy Singleton and Senate Minority Leader Tom Kean, Jr., which would require newborn infants to be screened for spinal muscular atrophy (SMA), was signed into law by Governor Phil Murphy.

“There are over 160,000 people in New Jersey who are spinal muscular atrophy carriers,” said Senator Singleton (D-Burlington). “Before the implementation of this law, this disease was diagnosed only after an infant started to develop signs and symptoms. With this new screening, genetic testing for newborns will now be a critical first step in early detection. The more information parents have, and the sooner they have it, are key factors in getting the appropriate course of treatment.”

The new law will require all infants born in New Jersey to be tested for the genetic markers associated with SMA. SMA is a progressive neurodegenerative disease that is caused by abnormally functioning motor neurons that control voluntary movement, such as walking, talking and swallowing.  SMA leads to progressive muscle weakness and atrophy, particularly in the muscles of the torso, upper legs and upper arms.  The symptoms of SMA typically appear in the first six months of life, although they may manifest later in childhood and even into adulthood.

The law will also require the Commissioner of Health to develop a comprehensive program of follow-up services and procedures in the event a newborn tests positive for one or more genetic markers associated with SMA.  At a minimum, the services and procedures will include genetic counseling for the parents of the newborn concerning the risk that one or both parents is a carrier of the genetic mutation associated with SMA. They will also include the risk that other children born to the parents may carry the mutation, pass it on to their own offspring, or may be born with SMA. They will include information concerning available treatment options for SMA.