Charlie Nawara was a happy nine-year-old kid until his parents noticed some strange behaviors following a case of strep throat.
He was grunting, clearing his throat and nodding his head repeatedly.
“One Thanksgiving I took a video just of everyone there and I notice myself in that video with that neck spasm, and it’s kind of hard to watch,” said Charlie Nawara, the PANDAS patient who’s the law’s namesake.
Charlie’s mom, Wendy, says doctors gave no answers for Charlie’s involuntary tics and the other obsessive behaviors that prevented him from even attending school.
Then she saw a television show about PANDAS – Or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections – but doctors didn’t give them the news they’d hoped for.
“And we’re absolutely shocked at the fact that something like a strep infection that goes awry was not included on insurance plans,” said Wendy.
Charlie’s parents used his college fund to get him treatments dispersed through an IV.
One round of treatments can cost up to $15,000, according to Governor Rauner’s news release.
Charlie says without treatment he wouldn’t be able to go to school today.
“I think if I was still in the same place I was back in middle school then no, but the IVIGs definitely helped,” said Charlie.
But Wendy knew others might not have that luxury.
That’s why they teamed up with Lombard mom Kate Drury whose son, coincidentally also named Charlie, has PANDAS as well.
They pushed for legislation to require insurance coverage for the disease.
In July that wish came true when Governor Rauner came to the Drury home to sign Charlie’s Law, requiring all insurance companies in Illinois to cover the treatments for both PANDAS and a similar disorder, Pediatric Acute-Onset Neuropsychiatric Syndrome, or PANS, becoming the first state to do so.
“Although they called it Charlie’s Law it’s about all these kids with PANDAS and PANS not only in Illinois but everywhere,” said Wendy.
Now Charlie is a high school graduate and heading off to college for his freshman year.
He’ll have student loans—but says that’s ok.
“It was hard when I wasn’t able to go to school because of this, so being able to be a normal kid and go to school and learn more is a good feeling,” said Charlie.
A good feeling the Nawaras say many other children won’t miss out on thanks to Charlie’s Law.
Illinois is the first state in the country to require insurance companies to cover treatment for PANDAS and PANS, but Governor Rauner says he hopes it is not the last.
Naperville News 17’s Beth Bria reports.
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