New law requires rare disorder to be covered

Local News

CHAMPAIGN, Ill. (WCIA) — A new bill signed this week requires Illinois health insurers to cover a very rare disorder in children. 

It’s called PANDAS: An autoimmune disorder that stems from a strep infection. Many doctors don’t even recognize it because it only affects 1 in 200 kids. But with this new law, those with this disorder will get the help they need.

Rheanna Jones of Rantoul battled it years ago. You met her back in 2013 in an “Angels Among Us story. Now, she’s doing better and is grateful for the new law. But getting to this point wasn’t easy.

At 12 years old, Jones was a fun loving energetic girl. But her life took a unexpected turn.

“I thought maybe it was like hormones maybe I’m just turning into one of those angry teenagers.”

That anger quickly spiraled into violence.

“Instead of throwing a temper tantrum it would be a temper tantrum with knives at mom. It was just a nightmare.”

“She would go from 0 to 60 in about five seconds. So you don’t know from one minute to the next what child you’re going to have.”

It made her feel like she wasn’t human. As she got older, it got worse.

“She jumped out of cars. She tried to at 70 miles an hour. She succeeded at 20.”

And it didn’t stop there.

“All of a sudden they’re in these deep dark hallucinations and they have night terrors and everything you can possibly imagine that looks like World War Three going on in your head. And these kids can’t escape it.”

They knew something else had to be causing this but the 16 doctors they saw had no answers.

“We got people who just looked at us and laughed because it was so uncommon. Nobody knew.”

Until one day, they went to a special research doctor in Chicago who diagnosed her in 15 minutes.

The cure was simple: A mega dose of antibiotics.

“The recovery process came so quick after struggling for so long.”

Jones is 20 now, playing sports, going to college and laughing with friends. But recovery came at a cost. Many of their medical bills were out of pocket.

“We were looking at possibly $85,000 to $100,000 in order to treat her and insurance companies would not cover that.”

But the new law makes sure they do. PANDAS families are now backed by the state and can move forward with hope and assurance for their future…just like Jones.

“I feel like I’m right where I need to be. And I didn’t see that for me six years ago. So that’s very exciting that I know I’m ok and I’m going to make it.”

While her PANDAS is gone, the side effects linger. Her brain is still recovering and it’s going to take her longer to get through school. But she’s a strong willed person and she says she’ll find a way.

The bill goes into effect immediately. Illinois is first state in the country to pass a law that requires health insurers to cover treatment for PANDAS. 

Copyright 2020 Nexstar Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.