Tom Cullerton’s lifesaving PANDAS measure signed into law

TCullerton PANDAS signed

LOMBARD- Children will soon no longer be denied treatment for PANDAS disease, thanks to State Senator Tom Cullerton (D-Villa Park). 

Cullerton’s initiative, House Bill 2721, now requires that all individual and group plans of accident and health insurance must offer coverage for treatment PANDAS and PANS.

“No child should suffer,” Cullerton said. “As the father of three young sons, I know I would move mountains to take away any ounce of pain. This new law is a testament to the incredible mothers who went to battle to support Illinois’ children to ensure they receive essential treatment and raise awareness for this tormenting disease.”

PANDAS which is known as Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal affects approximately 1 in 200 children throughout the United States.

Cullerton first became aware of PANDAS four years ago after meeting with the group formed by Executive Director Wendy Nawara and Vice President Kate Drury of PANDAS/PANS Advocacy & Support, whose children have suffered from PANDAS to raise awareness of symptoms and to require insurance companies to cover the cost of treatment for this fairly unknown illness.

Drury’s son, Charlie, woke up on his eighth birthday with unusual symptoms. The little boy who loved participating in talent shows and putting on skits was now scared of performing in front of crowds and talking to his friends. There was an immediate change in his personality.

The next two months of Charlie’s life were the hardest time for his family. He instantly displayed symptoms of obsessive compulsive disorder (OCD). Charlie didn’t want to be touched or hugged. He feared his food and was deathly afraid of water to the point where he couldn’t shower or brush his teeth. He suffered from hallucinations to the extent he was unable to recognize his mother or father.

Drury was faced with a difficult situation, either being forced to institutionalize her son or place her other two children in the care of a loved one.

After two months of looking for answers, a doctor diagnosed Charlie with PANDAS. Insurance companies didn’t cover the cost for his treatment, which can run upwards of $12,000 in hospital bills.  

"Our hope is that this law will give our physicians better control over the decision-making process when it comes to recognizing and treating PANDAS/PANS quickly and appropriately,” Nawara said. “Our doctors have been caught between a rock and a hard place knowing what their patients need to heal and knowing that the insurance companies have refused to cover it, despite the evidence that expeditious treatment works best. To say nothing of the trauma and enormous strain this places on the children and their families. They've been watching their children slip away, and have felt that no one had the power to stop it. Now that insurance will cover these treatments, we can stop it. Kids will be getting better."

The new law known as “Charlies’ Law” was signed at Drury’s home on Tuesday, July 18. Illinois will become the first state in the nation to require insurers to cover treatment for PANDAS/PANS.

“It’s our duty to ensure our children don’t suffer. The faster we diagnose and treat children affected by PANDAS, the quicker kids can heal,” Cullerton said. “It is common sense to make sure there is treatment readily available to quickly treat children inflicted with PANDAS without loading Illinois’ parents with mountains of debt.”

House Bill 2721 will go into effect immediately.


PHOTO left to right: Kate Drury, Mother and Vice President of PANDAS/PANS Advocacy & Support, State Representative Deb Conroy (D-Villa Park), Charlie and Charlie who both were diagnosed with PANDAS, State Senator Tom Cullerton (D-Villa Park) and Wendy Nawara, Mother and Executive Director of PANDAS/PANS Advocacy & Support.