CHICAGO — Illinois became the first state in the country on Tuesday to enact a law requiring insurers to cover medical treatment for two pediatric autoimmune disorders.
Illinois Governor Bruce Rauner signed “Charlie’s Law,” which will provide coverage for treatments for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep (PANDAS) and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS).
PANDAS patients suffer from obsessive compulsive and tic disorders following a strep infection, while PANS patients suddenly develop obsessive compulsive disorder and other psychiatric symptoms without a known cause, according to the National Institute of Mental Health.
“It will help numerous other families in the state,” Wendy Nawara, of the PANDAS/PANS Advocacy & Support group, said in an interview. “We’re going to see other states follow suit.”
One in 200 children in the United States suffers from one of the disorders, according to PANDAS Network, an advocate group. One treatment can cost up to $15,000, Nawara said. Treatment guidelines for the disorders are expected to be published on Wednesday, advocates said.
A representative from the Illinois Department of Insurance did not immediately provide comment on the new law.
Nawara and Kate Drury, also an advocacy and support group board member, both have sons diagnosed with PANDAS named Charlie, the law’s namesake. They first talked to state senator Tom Cullerton, a Democrat, about the issue four years ago.
“We could not have done this without all of the moms and all of the families who are advocating for their children to find an end to this,” Cullerton said at the law signing at Drury’s home.