All Illinois Babies To Be Tested For Inherited Muscle Disorder

Aug 24, 2018

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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 that affects the motor nerve cells in the spinal cord. It 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, said there is no cure for SMA, but the first treatment was recently approved.  He said catching the disease early is vital.

“Damage that is done, is not undone," said Carlson. "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.”

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.