Rare Disease Report

Illinois Leading the Way for Managing PANDAS

JULY 18, 2017
James Radke
Illinois is taking the lead on managing the Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal (PANDAS) by making it illegal for insurance companies to refuse offering options to treat these children.

State Senator Tom Cullerton introduced House Bill 2721 that requires all individual and group plans of accident and health insurance to offer coverage for treating PANDAS. The bill was signed into law Tuesday, July 18 at the house of Charlie Drury and the law, referred to as “Charlie’s Law,” is effective immediately.

Senator Cullerton with PANDA advocates (including Charlie) at the signing of the bill into law. 

Charlie Drury is a young boy who suffered from PANDA and serves as the inspiration for his mother Kate’s work with Cullerton to create the bill. 
PANDAS is a sudden and unexpected illness that can dramatically impact a family if proper treatment is not begun. It is a rare autoimmune response that for reasons that are unclear, can develop following a step infection. The key symptoms are psychiatric in nature, thereby making a diagnosis difficult. A child may be diagnosed with PANDAS when:
  • Presence of obsessive-compulsive disorder and/or a tic disorder
  • Pediatric onset of symptoms (age 3 years to puberty)
  • Episodic course of symptom severity (see information below)
  • Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep or history of scarlet fever)
  • Association with neurological abnormalities (physical hyperactivity, or unusual, jerky movements that are not in the child’s control)
  • Very abrupt onset or worsening of symptoms
Treatment involves antibiotics, as well as drugs and therapies commonly used to manage obsessive-complusive disorder, among other psychiatric symptoms.
“No child should suffer,” Cullerton said in a news release. “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.”
Drury woke up on his 8th birthday with unusual symptoms. Typically a very social and outgoing child, he developed obsessive compulsive disorder (OCD) and would not want to be touched. He began to fear food and water and, at one point, his fear of water meant he refused to shower or brush his teeth. Drury soon started hallucinating and was eventually unable to recognize his parents.
It took 2 months before Drury was diagnosed with PANDAS, and with treatment, he is now doing much better. Unfortunately, his family learned that insurance companies didn’t cover the cost for the treatment—which can reach as high as $12,000 in hospital bills.  
Wendy Nawara, President and Executive Director of PANDA/PANS Advocacy & Support said:
"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 added:
“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."
For more information on PANDAS and how advocates are looking to change laws in other states, follow Rare Disease Report on Facebook and Twitter.

Stay informed on the latest rare disease news and developments by signing up for our newsletter.
Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved.