- PANS/PANDAS is a costly autoimmune disease affecting 1 in 200 children
- A Nebraska bill would require insurance to cover the expensive treatments
- Lawmakers must pass the legislation before the session ends in mid-April
BROADCAST TRANSCRIPT:
LINCOLN, Neb. (KMTV) – An estimated one in 200 children have been diagnosed with PANS/PANDAS, according to the PANDAS Network. PANS/PANDAS is a costly autoimmune disease that causes suddent OCD, primarily in children. A bill in the Nebraska Legislature could soon change how families pay for treatment by requiring insurance companies to cover the costs.
Both of Grace Troupe’s daughters, 8-year-old Belle and 10-year-old Violet, have been diagnosed with PANS/PANDAS.
"That's what our immune system does, it attacks our brain," Violet Troupe said. "PANS, PANDAS is sometimes called brain on fire, so we made a brain on fire badge."
There is a way to treat the disease, but Grace Troupe said each dose costs tens of thousands of dollars.
"I know I could have my children back and that it, if insurance covered it, that I could have them back," Grace Troupe said.
Sen. George Dungan of Lincoln introduced the legislation, which passed the first round on March 31 with overwhelming support.
"The idea that they're paying $15,000 — $30,000, whatever it may be, out of pocket on a regular basis is really, really upsetting to me," Dungan said.
"We've had to fight so hard to get what we need. And, um, I mean, when your child's brain is under attack, you do anything to stop it," Grace Troupe said.
The legislature has just five more days to pass this legislation. The bill needs to clear the second-round vote on Tues., April 7 and then a third vote before the end of this session on Fri., April 17.
Lawmakers will vote on this bill on Tuesday, a day where dozens of votes are scheduled due to a backlog caused in part by a delay to pass the budget.
If the bill passes, treatment for the Troupes could begin in January 2027.
"Mom has done the best of excellent jobs," Violet Troupe said, going over to hug her mom.
"Thanks, darling. Love you," Grace Troupe said, hugging her daughter.
This story was reported on-air by a journalist and has been converted to this platform with the assistance of AI. Our editorial team verifies all reporting on all platforms for fairness and accuracy.
