‘Charlie's Law' to Expand Insurance Coverage for PANDAS/PANS Signed Into Law

A normal childhood condition changed her son’s behavior, and on Tuesday, a suburban mom’s campaign paid off when Gov. Bruce Rauner signed a bill into law that will help families like hers all across Illinois.

Rauner signed “Charlie’s Law” in Lombard, at the kitchen table of Charlie Drury, a 12-year-old who suffered a debilitating mental illness after a case of strep throat.

"My son on his eighth birthday got strep throat and was never the same child,” his mother Kate Drury said. “Every day he grew farther away from us. He developed extreme OCD, anxiety, he became anorexic because he was scared of food. He was hallucinating, his brain was inflamed and we had no idea.”

Drury said she paid $12,000 out of pocket to eventually fund the treatment Charlie needed, but the experience made her think about other Illinois families who may not have that ability.

She joined with Wendy Nawara, whose children also suffered from Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections and Pediatric Acute Neuropsychiatric Syndrome (PANDAS/PANS).

Together they worked on legislation, named for their sons, to close a coverage gap and make Illinois the first state to require insurance providers to cover the cost of PANDAS/PANS treatment.

"This bill will change families’ lives,” Nawara said. “Not only will it affect the families, but it will encourage the doctors to learn more about about PANDAS/PANS so that they can treat it more expeditiously and get these kids what they need.”

State Sen. Tom Cullerton introduced the bill after hearing their families’ stories, and after four years of work, their experience is now law.

"This is going to make an impact on lives throughout our state, and the goal is to get this throughout the country,” Cullerton said.

PANDAS/PANS advocates and lawmakers said it was a labor-intensive process to get insurance companies on board, but now the state of New York is looking to draft similar legislation.

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