A new law will require Illinois health officials to test newborns for spinal muscular atrophy (SMA), which is the leading genetic cause of death for infants under two years of age. The bill was introduced by State Senator Julie Morrison and expands the Newborn Metabolic Screening Act. The law mandates that the Illinois Department of Public Health start testing infants for the disease by 2020. The legislation makes Illinois one of the first states to adopt permanent newborn screening for SMA.
"Medical advancements have made all the difference in treating this horrific disease that affects our youngest children," Senator Morrison said. "Including testing for SMA in regular newborn screenings will ensure treatment can begin immediately to prevent the disease from progressing and causing lifetime harm or even death."
Spinal muscular atrophy is a terminal, genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Essentially, it stops infants from standing, swallowing and, eventually, breathing. The disease affects between 1 in 6,000 - 10,000 infants born in the U.S. and most of those with the disorder do not survive more than 18 months.
Senator Morrison’s billed passed unanimously in the General Assembly and takes effect immediately.