SPRINGFIELD – Illinois newborns will now be tested for Spinal Muscular Atrophy (SMA) under a proposal passed by State Senator Julie Morrison (D-Deerfield) that was signed into law on Tuesday.
“Medical advancements have made all the difference in treating this horrific disease that affects our youngest children,” Morrison said. “Including testing for SMA in regular newborn screenings will ensure treatment can begin immediately to prevent the disease from progressing and causing life-time harm or even death.”
Morrison’s new law, passed under Senate Bill 456, requires the Illinois Department of Public Health to test for SMA during the newborn screening test. The department is required by the new law to begin testing by 2020 at the latest.
SMA is the most common genetic disorder linked to infant death worldwide and affects between 1 in 6,000 to 1 in 10,000 U.S. births. It is a terminal, degenerative disease that causes severe symptoms that eventually prohibit a child from walking, standing, eating, swallowing and even breathing. Most children with the genetic disorder will not live past 18 months.
Fortunately, advances in medical treatment led the FDA to approve the first treatment for SMA in December 2016. The drug is only effective, however, if given early before symptoms fully develop, making testing of paramount importance.
“I am proud Illinois is taking a lead in ensuring all children are tested for a painful disease that can now be both tested for and treated,” Morrison said.
Senate Bill 456 was signed into law on Tuesday and takes effect immediately.