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Families Of Children With PANDAS Disorder Still Struggling To Get Insurance Coverage

In 2017, then-Gov. Bruce Rauner signed into law what was known as Charlie's Law that required insurance companies to cover treatment costs for certain auto immune diseases in children. But some insurance companies are still not covering the costs.

In 2017, then-Gov. Bruce Rauner signed into law what was known as Charlie's Law that required insurance companies to cover treatment costs for certain auto immune diseases in children.

One of those conditions is called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS). And approximately one in 200 children suffer from it. 

PANDAS advocate Wendy Nawara sat down with us to talk about how despite the law, some insurance companies are still not covering treatment costs. 

Daisy Contreras: You have a personal story to go with this — you have seen the symptoms and gone through the treatment process. 

Wendy Nawara: I have three children who have PANDAS and one of them, Charlie, was one of the Charlies for whom that law was named in 2017. What happens when a child has Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) or Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is that they have an overnight onset of what looks to be mental health symptoms and they are debilitating. 

Credit Wendy Nawara / Wendy Nawara
Wendy Nawara
PANDAS advocate Wendy Nawara is back in Springfield to push for amendments to "Charlie's Law" which was signed by then-Gov. Bruce Rauner in 2017. The law requires insurance companies to cover the treatments costs for pediatric autoimmune disorders. But loopholes and issues with insurance codes not recognizing the disorders, has many families still struggling.

Children exhibit OCD in ways that they've never shown a propensity for. They might exhibit eating disorders, they're unable to sleep, they're unable to eat. They're afraid of water, going to school—they exhibit quite a few symptoms. And oftentimes, they become nonfunctional. So, they can't attend school, they can't play with their friends — and parents are really scared half to death about what might have happened to their children. 

It was really important when we started this journey to ensure that families get insurance coverage for the treatment of this disorder, because if you do that, these children can go back to a normal, healthy life. My three children with PANDAS are currently all in college and doing quite well. 

DC: What's the difference between PANDAS and PANS?

WN: PANS is kind of an umbrella term, the pediatric acute onset neuropsychiatric syndrome. It

covers other infectious triggers like a pneumonia and Lyme disease. Even hand, foot and mouth would be an infectious trigger. Whereas PANDAS — pediatric autoimmune neuropsychiatric disorder associated with strap is strap induced only. So, think of PANDAS as being little and PANS is a larger umbrella. 

And then autoimmune encephalopathy, which is the language that's in this legislation we're working on now, encompasses both of those things. 

DC: When it comes to the coding insurance companies use to cover PANDAS and PANS – that’s where the issue is.  Walk me through that coding issue and how the new language in this bill is going to clarify that. 

WN:  So, the International Classification of Diseases (ICD) is on its 10th version right now. In the ICD 10, there is no specific code for PANDAS or PANS. But in the ICD 11, which is due to come out and be fully implemented by January 2022, PANDAS is included.

So, we really are asking for kind of a stopgap measure until that code can be implemented in doctors’ offices across the state. We need our insurers to accept a code of auto immune encephalopathy because it's the best code out there to describe what PANDAS and PANS are. 

DC: Tell me more about that treatment — costs could be up to $15,000.

WN: The treatments range from what would be considered a for a mild case would be something like antibiotics, maybe steroids. The treatment that has really caused roadblocks for our families is called IVG and that stands for intravenous immunoglobulin treatments. And what they do in that is they insert an IV and give a child immunoglobulin from many donors. What that tends to do is reset the immune system so that it works properly.

It attacks the things that need to be attacked as opposed to attacking a portion of the child's brain. Yes, it is extremely expensive. Like you said, up to $15,000.  It is dose-based on the weight of the child. So honestly, the longer we wait to treat these kids, they grow bigger and the more expensive that treatment becomes. And if a doctor has inadvertently missed it, or if an insurance company puts roadblocks up in front of a family for a year at a time — what could have been solved with perhaps a $5,000 treatment becomes that $15,000 treatment. So, it's really important that we employ the new language to clarify Charlie's Law, so that everyone knows what PANDAS and PANS are and what the treatment is, and they can get that covered

The bill is HB 2846.

Daisy reported on statehouse issues for our Illinois Issues project. She's a Public Affairs Reporting program graduate from the University of Illinois Springfield. She also graduated from the Illinois Institute of Technology, and has an associates degrees from Truman College. Daisy is from Chicago where she attended Lane Tech High School.