SIGNED INTO LAW: Kean Bill Requiring Newborn Screening for Spinal Muscular Atrophy

Says Early Detection Leads to Prompt Treatment

Legislation sponsored by Senate Republican Leader Tom Kean ensuring that newborns with spinal muscular atrophy (SMA) can receive treatment as soon as possible has been signed into law.

“SMA is the leading genetic cause of death in infants and toddlers in the United States,” said Kean (R-21). “Treatment administered without delay will improve the quality of life for infants with SMA, leading to better outcomes with potentially life-saving results. Screening for spinal muscular atrophy at birth will save the lives of New Jersey’s newborns.”

Kean’s bipartisan legislation, S-974, requires infants born in New Jersey to be tested for the genetic markers associated with SMA.

SMA leads to progressive muscle weakness and atrophy, particularly in the torso, upper legs, and upper arms. Individuals with the most common form of SMA typically have a lifespan of less than two years.

All babies born in New Jersey are required to be tested for fifty-five disorders within 48 hours of birth. One heel prick provides enough blood to test for all fifty-five disorders.

It is estimated that 165,889 New Jerseyans are carriers of the disease.

“I hope we will find a cure for SMA soon,” added Kean. “Until then, infant screenings are our best bet to combat this disease.