Last night, Governor Bruce Rauner of Illinois signed SB 456, adding spinal muscular atrophy (SMA) to the state’s newborn screening panel.
The bill adds Illinois to a number of states who have already adopted permanent SMA screening, including Missouri, Utah, Minnesota and Indiana.
The legislation was sponsored by Senators Julie Morrison, Michael Connelly and Thomas Cullerton. Representatives Camille Lilly, Dan Swanson and Mark Batinick led efforts in the Illinois House. In addition, Representative Michael McAuliffe sponsored HB 4745, also signed yesterday, which will help reduce bureaucratic delays in the implementation of newborn screening.
We especially thank SMA advocates Kathleen Heinrich and Christian Schreck, Erik and Amy Peterson, Jill and John Zmaczynski, and Randy and Tracy Parlier for their efforts.
The Importance of Advocacy
In July, Health and Human Services Secretary Alex Azar officially approved adding SMA to the official federal recommendations for newborn screening. Although this is a significant and important step, it is only the beginning. Each state decides what conditions it will include in its screening panel. We must continue to work to make sure that every state screens for SMA.
Thanks to the dedicated advocacy of our community, Cure SMA has been at the forefront of federal- and state-level work for newborn screening. Cure SMA is also providing states with grants to help cover start-up costs for SMA screening.
None of our previous victories in newborn screening would have been possible without action from the SMA community. A simple first step, such as attending a newborn screening committee meeting, or making an advocacy visit to a state legislator, can open the door to life-saving early treatment for those born with SMA. On average in the US, one baby each day is born with SMA. Each day represents the opportunity to save a life through newborn screening and early treatment.