New Illinois Law Mandates SMA Screenings

Aug 26, 2018

A new law mandates the Illinois Department of Public Health to begin screening babies for Spinal Muscular Atrophy, or SMA… a neurodegenerative disorder linked to infant death.

SMA is an inherited muscle disorder… it affects the motor nerve cells in the spinal cord… which limits the patient’s ability to walk, eat, or breathe. Children with the disease typically die before 18 months.

Dr. Doug Carlson, Medical Director of HSHS St. John’s Children’s Hospital in Springfield, says there is no cure for SMA, but the first treatment was recently approved.  He says catching the disease early is vital.

“Damage that is done, is not undone. It really is catching it early before symptoms to begin treatment. Newborn screening, although very expensive… we now have a genetic test which we haven’t had that long, and we have a treatment.”

He says it’s difficult to detect at first.

“Most appear normal in their first months of life. Sometimes in the first six months of life, parents start seeing subtle symptoms… not rolling over, not being able to stay seated at times.”

There will be additional costs for the state’s public health department, but the measure allows the department to increase the newborn screening fee to offset some of that cost… meaning parents or insurance companies will be paying more. Testing will begin by 2020.