SENATE, No. 974







Sponsored by:


District 7 (Burlington)

Senator  THOMAS H. KEAN, JR.

District 21 (Morris, Somerset and Union)


Co-Sponsored by:

Senators Cruz-Perez, Diegnan and Gopal






     Requires newborn infants be screened for spinal muscular atrophy.



     As introduced.


An Act concerning screening newborn infants for spinal muscular atrophy and supplementing Title 26 of the Revised Statutes.


     Be It Enacted by the Senate and General Assembly of the State of New Jersey:


     1.    a.   Each infant born in this State shall be tested for the genetic mutations associated with spinal muscular atrophy.

     b.    The Commissioner of Health shall 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 spinal muscular atrophy, which services and procedures shall include, at a minimum:

     (1)   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 spinal muscular atrophy, and 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 spinal muscular atrophy; and 

     (2)   information concerning available treatment options for spinal muscular atrophy.

     c.     The Department of Health may charge a reasonable fee to administer tests performed pursuant to this section.  The amount of the fee and the procedures for collecting the fee shall be determined by the Commissioner of Health.

     d.    The Commissioner of Health shall adopt rules and regulations, pursuant to the “Administrative Procedure Act,” P.L.1968, c.410 (C.52:14B-1 et seq.), necessary to carry out the purposes of this section.


     2.    This act shall take effect on the 90th day after the date of enactment, except that the Commissioner of Health shall take any anticipatory administrative action in advance thereof as may be necessary to implement the provisions of this act.





     This bill requires all infants born in this State to be tested for the genetic markers associated with spinal muscular atrophy (SMA), which 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 or, in rare cases, during adulthood.  Individuals with the most common form of SMA typically have a lifespan of less than two years.  Approximately one in 50 Americans is a carrier of the disease, and it is estimated that, in New Jersey, 165,889 people are SMA carriers, 304 are currently living with the disease, and approximately nine babies are born with SMA each year.

     In December 2016, the federal Food and Drug Administration approved Spinraza (nusinersen) as the first drug approved to treat SMA.  Early testing has suggested that diagnosing and treating infants with SMA before they become symptomatic may be the key to successful treatment outcomes, underscoring the importance of early detection of the disease.