Bill becomes Charlie’s Law
Gov. Bruce Rauner came to the Lombard home of Kate Drury on Tuesday morning to sign Charlie’s Law, which will allow children diagnosed with strep throat-related pediatric autoimmune neuropsychiatric disorders—known as PANDAS/PANS—to receive intravenous immunoglobulin (IVIG) treatments that were previously denied by insurance companies. Looking on as Rauner signs the bill are (top photo, left to right) Rep. Peter Breen, R-Lombard; Rep. Deb Conroy, D-Villa Park; Charlie Nawara and his mom, Wendy; and Charlie Drury and his mom, Kate. The law, named after the two Charlies, evolved through grass-roots efforts by Kate and Wendy to convince their local politicians to create legislation requiring insurers to cover the proven IVIG treatment.
By Jane Charmelo
Kate Drury likely didn’t think she’d wake up one day and find that her then-8-year-old son Charlie had seemingly become a different person; nor would she have known it was the beginning of a long journey that would end up in Springfield with a law partially named after him.
But, that’s where things are headed after a bill named Charlie’s Law, HB 2721, was slated to be signed by Gov. Bruce Rauner—at Drury’s Lombard home—on Tuesday, July 18.
The bill essentially states that individual and group insurance plans will be required to offer coverage for treatments of an illness referred to as PANDAS/PANS.
Charlie’s own journey began with a strep throat in November 2012 and ended up—after many doctor visits—with a diagnosis of pediatric autoimmune neuropsychiatric disorders associated with streptococci infections, or PANDAS.
Symptoms of PANDAS vary but can include developing obsessive compulsive disorders, tics, an aversion to scents, phobias, behavioral aggression and age regression, to name a few.
Drury explained for “Out and About” back in 2013 how she sought psychiatric help for her son, but the medications increased his symptoms. She then took Charlie to a doctor who discovered her son’s strep level was “off the charts.” That doctor connected Drury with a local physician who happened to be an expert on PANDAS, and while a 28-day regimen of Augmentin provided improvement, Charlie was not fully healed.
When it was suggested that Charlie be given a treatment known as IVIG, or intravenous immunoglobulin, which replaces blood antibodies and is used therapeutically to treat other illnesses, the Drurys found out their insurance company would not cover any of the cost—$12,000 for one treatment.
While fundraisers helped raise money to help offset some of the family’s medical costs, Drury decided that it was worth fighting to get the treatment covered, so other families didn’t have to go through her experience.
She learned about Wendy Nawara—also with a son named Charlie who was diagnosed with PANDAS—who had formed a private parent group.
They and some others then launched a non-profit organization called PANDAS/PANS Advocacy, which led to their approaching local government, through Rep. Deb Conroy (D-Villa Park) and Sen. Tom Cullerton (D-Villa Park) to hopefully get legislation passed to provide insurance coverage for IVIG treatments.
Cullerton recalled how the women went to Springfield campaigning for advocacy and awareness of PANDAS and PANS, or pediatric acute-onset neuropsychiatric syndrome.
He and Conroy listened, Cullerton continued, and realized, “The need was there to get insurance coverage.”
First came a task force/advisory council to educate and inform, the senator recounted, which “kept bringing more people into the fold,” from insurance company representatives to doctors and other health professionals, and others affected by the illness.
Drury remembers experiencing resistance from both the medical and insurance fields, and through experience, learned how to get the necessary documentation and facts to combat the skepticism.
Cullerton said the idea was not to rush into legislation requiring that insurance companies pay for IVIG treatment, but to educate those involved—about diagnosing PANDAS early on to take a proactive approach, and on how there is scientific evidence that IVIG therapy works on PANDAS patients.
Doctors, he continued, became proponents of the treatment and “jumped on board” to help convince the insurance companies that the IVIG treatment was successful, and “that helped immensely.”
Charlie Drury was stricken with PANDAS when he was 8 years old, although it took time and a number of doctors to diagnose his condition. Now, after campaigning with another mom—Wendy Nawara, whose son, also named Charlie, had PANDAS—his mom Kate Drury has helped get a bill passed that will cover a treatment for PANDAS that insurance companies previously denied. Charlie (center) is pictured with his siblings, Emma and Jack (who also was diagnosed with PANDAS but it was caught early).
Drury related how it took some two months for her son to get the right diagnosis, after Charlie’s doctor at first did not believe PANDAS existed, especially after a follow-up strep test came up negative.
However, Drury continued, by then the antibodies were already doing damage to his brain. So, with Charlie’s Law, not only will parents be able to get coverage for IVIG treatments, but PANDAS/PANS will be recognized as a bona fide illness.
For instance, Charlie’s doctor, who initially didn’t believe in PANDAS/PANS, ended up becoming a supporter, she related.
Charlie’s mom credits that turnaround for helping prevent a repeat of the illness after her other son Jack, then 4, developed symptoms—just weeks after Charlie’s IVIG treatment—that she recognized right away.
Early intervention with antibiotics, Drury emphasized, worked so that Jack did not require IVIG treatment.
After collaborating with such entities as the National Institutes of Health to work on developing standards of care, the medical profession will “have it in their toolbox,” Drury emphasized.
Four years may seem like a long time to work on enacting legislation, Cullerton acknowledged, but “we wanted to make sure we had a good, solid plan from the beginning.”
That plan, which will be called Charlie’s Law — for both Charlies —passed in both the House and Senate, said the senator, adding that there was “incredible bipartisan support.”
Conroy agreed, echoing how it was “unanimously supported by both parties in both chambers.”
She later commented, “It was a privilege to be a part of team Charlie … I became involved when Kate decided she never wanted another family to go through what her family had been through.”
“The PANDAS moms are a force to be reckoned with,” the representative said of Drury and Nawara, adding that at least three families have come forward with children needing treatment.
Rep. Peter Breen (R-Lombard) also contributed to the passage of HB 2721, saying he got involved this past March with encouragement from his wife, Margie.
He remembers there being some lingering opposition, and helped convince those legislators through “respectful contention” that the insurance companies were wrong not to cover IVIG treatments.
“It was the right thing to do,” Breen added.
Cullerton also pointed out how “it takes the federal government to set in motion a ‘standard of care,’ ” for which he and other legislators didn’t want to wait.
Now, the senator said proudly, other states are beginning to look to Illinois as a model for how to get such a treatment law enacted, and he credits Drury and Nawara for their tenacity.
They were “absolutely fantastic with sitting down with legislators from their home offices,” he praised, and said of his constituent, “I’m incredibly proud of the work Kate did.”
Drury is modest about her efforts, saying she did what any parent would do, including testifying in Springfield a number of times.
“They got to hear our stories,” she added.
Besides Illinois families, “It’s really going to help other states,” Drury said, adding that the advocacy organization is getting calls from families looking for help.
In the meantime, “We’re going to move forward with education,” Drury said, for medical, therapeutic and educational professionals.
She said that while the outcome is rewarding for families and children, and that going to Springfield has been “empowering,” at the same time, “It’s so bittersweet.”
That is, Drury continued, other children affected by PANDAS/PANS, and who did not get the diagnosis or treatment right away, have had to suffer while waiting for the legislation to pass.
“Now these kids are going to be able to have the tools,” she added.
As for Charlie, his mom says he remembers “bits and pieces” about his illness, such as being scared, not being able to eat or touch certain things, and the headaches.
At the same time, “Charlie’s excited; he’s proud,” Drury said.
The bottom line, though, for Drury, is, “These children are finally going to be recognized … get their lives back.”
For full details on the path of HB 2721, visit www.ilga.gov, and click on the link under House Bills.
For more information on PANDAS/PANS Advocacy and Support, visit www.pas.care.
