Kean Bill to Require Newborn Screening for Spinal Muscular Atrophy Advances

Senate Republican Leader Tom Kean’s legislation requiring all infants to be screened for spinal muscular atrophy has advanced in the Senate Budget and Appropriations Committee.

Spinal muscular atrophy, or 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 is the number-one genetic cause of death in infants and toddlers in the United States,” said Kean (R-21). “It makes sense to test babies at birth for SMA, which will help infants access treatment as soon as possible, leading to better outcomes with potential life-saving results.”

Kean’s bipartisan legislation, S-974, would require infants born in New Jersey 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.

“Early testing leads to early treatment, which will improve the quality of life for those with SMA,” added Kean. “I hope we will find a cure for SMA soon, but until then, newborn screening is our best bet to combat this disease.”