State lawmakers Monday conducted a study on a debilitating disease that affects about one in 200 kids but usually is not covered by insurance.
If you’ve never heard of PANS or PANDAS disorder, you’re not alone. Many doctors, medical professionals, parents, legislators, and insurance companies haven’t heard of it either.
It’s hard to watch Sara Hubler’s 14-year-old daughter when she has one of her episodes.
“It was hurting her. She would cry. She would scream. Why is this happening to me?” Hubler said. “You hug her. You tell her you’re going to be OK. You pretend like you’re really strong, and then you go in the other room and cry.”
The teen has had PANDAS disease since she was five. It started with about with strep.
“Instead of having body aches and chills and sore throat, she had a sudden onset of OCD, anxiety, separation anxiety, night fears, night terrors,” said Hubler.
PANDAS and PANS are acronyms for a disorder where the body’s immune system attacks the brain. It can be treated, but the treatments are expensive and insurance companies usually won’t pay up.
“They say that it’s considered experimental and not medically necessary. And so, my daughter has had the privilege of remaining sick for the last eight years,” said Hubler.
So, parents and experts spoke with lawmakers, asking for a law that would require insurance companies to pay for testing and treatment of PANDAS and PANS.
One expert said often disorders like autism are misdiagnosed. And they are really PANDAS or PANS.
“Say a child with autism, do you think possibly they could have pans or pandas rather than be autistic and if treated properly they could lose that diagnosis of autism?” Senator Brenda Stanley (R) Midwest City asked.
“Absolutely,” said Craig Shimasaki P.D. University of Oklahoma. “We have many instances in our own studies where the autism diagnosis was no longer.”
Lawmakers aren’t making any promises, but the parents definitely made an impression.
“Even if there’s nothing passed this year, even if we run no legislation, I would say you have informed a whole lot of people about a whole lot of things that they probably had no idea about,” said Senator Paul Rosino (R) Oklahoma City. “So, from the bottom of my heart I say thank you for that.”