Gov. Bruce Rauner visited a Lombard home Tuesday to sign Charlie's Law, the nation's first bill granting insurance coverage to children receiving treatment for PANDAS.
Signed at the kitchen table of former PANDAS patient, Charlie Drury, Charlie's Law requires all insurance providers to cover treatment for PANDAS -- pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. Just one round of treatment for the disorder can cost as much as $15.000, according to a news release.
Rauner was joined by PANDAS/PANS Advocacy and Support President Wendy Nawara and Vice President Kate Drury. Both women have sons named Charlie who suffered from PANDAS, the result of an autoimmune response to infections like strep throat, pneumonia and mononucleosis.
"It is a national challenge and I hope we set the standard for insurance coverage for this health issue around the United States," Rauner said Tuesday.
If diagnosed early on, PANDAS treatment could be as simple as a round of antibiotics, Kate Drury said. Without proper medical care, however, the disorder threatens serious health risks and an emotional toll, she said.
"My son, on his eighth birthday, he was completely normal before. The strep throat put him into a completely different child," Kate Drury said. "He was nonfunctional. He was anorexic because he was scared of food. He could no longer bathe. We were told to put him in an institution. Two months into it, I found a doctor that said, 'This is PANDAS. It's strep antibodies attacking the brain.'"
Fortunately, Drury's family fundraised the $12,000 to pay for Charlie's treatment. Now, four years after his diagnosis, Charlie Drury is recovered and thriving.
Drury, Nawara and their supporters, however, were met with fierce opposition from the insurance industry, according to state Rep. Deb Conroy, a Villa Park Democrat.
"The insurance companies were not in support of this," Conroy said. "We fought them tooth-and-nail all the way through, and it was because of my colleagues on both sides of the aisle, and these families that we educated everyone about what this actually meant to families -- and that is why we passed this."
Kate Drury said raising awareness about PANDAS and offering affordable treatment early on will save the state money in the long run.
"We are giving these kids the quality of life back, versus what could cost the state so much more by misdiagnosis," she said. "We are saving the United States so much money by taking care of these children from day one and recognizing this illness."
State Sen. Tom Cullerton, a Villa Park Democrat, has fought for the past for years alongside Katie Drury and Nawara to pass Charlie's Law, which is the first in the nation to guarantee coverage of PANDAS treatment. States such as New York are beginning to follow suit, he said.
"The families are what made this possible," Cullerton said. "The families advocating for their children, the families stepping up and doing a ton of leg work made our job as legislators easier."