Tom Cullerton fights to ensure insurance companies cover costs for children's healthcare

SPRINGFIELD- Children may soon no longer be denied treatment for PANDAS disease, thanks to Villa Park Democratic State Senator Tom Cullerton.

Cullerton's lifesaving initiative that will require Insurance companies to offer coverage for treatments of PANDAS - Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections - passed the House and Senate with bipartisan support.

Cullerton has been working with the group PANDAS/PANS Advocacy for the last four years to raise awareness and require insurance companies to cover the cost of treatment for this fairly unknown disease that affects approximately 1 in 200 children throughout the United States.

"As the father of three young sons, I know as a parent you do whatever you can to protect your children from unnecessary pain," Cullerton said. "I have been honored to work with these incredible advocates from PANDAS/PANS Advocacy, to support Illinois' children in receiving essential treatment and raising awareness of this tormenting disease."

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.

PANDAS and PANS is the result of an abnormal immune response to common infections such as strep throat, walking pneumonia, mononucleosis and other similar infections.

Drury saw a drastic change in her son Charlie overnight, who once loved performing in talent shows and putting on skits. He woke up on his 8th birthday scared of crowds and of talking to his friends.

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.

"As a parent, it is so hard to watch your child completely deteriorate in front of your eyes. You go to the doctor, get a diagnosis, and then are unable to access the treatment that doctor prescribes. The biggest problem our families have faced is that we've not been able to rely on our insurance plans to cover the doctor recommended, medically necessary care required," said Nawara. "This treatment gives our kids their lives back. We have needed this for a long time. Our families are so grateful that Illinois is taking these steps to help us."

HB 2721 will provide that all individual and group plans of accident and health insurance must offer coverage for treatment PANDAS and PANS. Once this measure is signed into law it will be known as "Charlie's Law."

Symptoms range from severe separation anxiety to motor tics that appear similar to seizures and hallucinations. There is a drastic change in behavior that often becomes severe enough to prevent children from attending school, not completing basic tasks like taking a shower or accepting a hug from their loved ones and avoiding extracurricular activities due to social anxiety.

Cullerton pledges to continue to work to raise awareness and support to help children like Charlie.

"There are effective treatments for children inflicted with PANDAS and PANS," Cullerton said. "It's 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 now moves to the governor's desk for consideration. Cullerton is hopeful the governor will approve this measure.