House backs study of insurance coverage mandate for treatment of debilitating child illness - Kansas Reflector

TOPEKA — Shannon Wright’s daughter suddenly exhibited bizarre behavior Sept. 13, 2011, that was subsequently found to be a rare autoimmune disorder in which streptococcal or other infectious agent compelled antibodies to mistakenly attack the girl’s brain.

Ramifications of such a vicious assault on the brain were immediate, Wright said, but treatment of the malady presented a mystery. Her daughter vacillated between fetal positions in the corner of the couch, screaming and sobbing uncontrollably, running through the house checking locks and seeing if everyone in the family was safe. She was aggressive at school and asked to be put to death by her parents.

“All I could do was hug and rock her as she begged me to make the unseen terrors stop,” said Wright, a social worker specializing in youth. “The sudden change in my normally sweet-natured 9-year-old daughter came on with such intensity and ferociousness, I felt as though the wind had been knocked out of me.”

Medical professionals recommended anti-psychotic medications and enrollment in mental health programs. Conventional alternatives also included antibiotics, steroids and behavioral therapy. While on the internet searching for an explanation of this catastrophic turn of events, Wright stumbled across references to sudden-onset obsessive-c0mpulsive disorder and connections to conditions abbreviated as PANS or PANDAS.

“It was the magic word combination,” Wright said. “PANDAS popped up on my screen. As I read the description, I literally stood up and yelled ‘This is it!’”

That led to doctors in Chicago and two rounds of expensive treatment, not covered by insurance, of IVIG or intravenous immunoglobulin. The cost of the initial round was $10,000, which was put on a credit card. After a relapse, the second round cost $12,000, which was paid with help of donors. Her daughter responded to the therapy and her brain began to heal. She regained her footing and returned to regular classrooms in school. She planned for college.

“No other treatment attempts brought the healing that IVIG did for Alyson. She slowly came back to us,” Wright said.

Insurance tests

Rep. John Eplee, an Atchison Republican and family physician for more than four decades, has sought for four years to convince the Kansas Legislature to launch a rigorous assessment to determine if it was in the state’s best interests to require insurance companies to cover IVIG treatment of children who contracted PANS or PANDA and couldn’t be helped through other medical interventions.

The process in Kansas begins with examination of the experience in others states that adopted IVIG therapy for this illness. The next step is a pilot project in Kansas to understand scope of such a mandate. With that information in hand, the Legislature would weight benefits and detriments of a statewide insurance mandate.

The anticipated increase in insurance premiums has been estimated at less than 1%. House Bill 2110, which passed the Kansas House by a 113-8 margin last week, would require the state’s employee health plan to run the pilot project to ascertain demand for the IVIG treatment in Kansas. One estimate put the immediate cost of the pilot at $500,000.

“This is a very serious disease,” Eplee said. “It has a very, very abrupt onset. Your child is normal at night when you put them to bed and the next morning they wake up and they’ve got profound fears, they’ve got OCD, they have profound food restrictions, they have anxiety separation from their parents and loved ones.”

He said about 1 of 200 children contract PANS, or pediatric acute-onset neuropsychiatric syndrome, and PANDAS, or pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Perhaps 1 of 400 of these young patients would benefit from IVIG.

Other considerations

Rep. Randy Garber, R-Sabetha, said he objected to the pilot project designed to assess whether the state’s health insurance plan could absorb the financial impact of treatments useful to the Wright family. He voted against the bill along with seven other state representatives.

“While my heart goes out to the families who will experience this terrible health issue, I cannot in good conscience appropriate money the constituents of my district have given to the state for the purpose of funding our government and expend it for some other cause,” Garber said. “It would, in my opinion, be a violation of the oath of office I have sworn to uphold.”

Rep. Tatum Lee-Hahn, R-Ness City, voted for the bill because she wanted to make a political point about potential danger of vaccinating children.

“I cast this vote in honor of every family in Kansas that has suffered in silence,” she said. “I would hope eventually we can focus on the root issue of vaccine injuries and PANDAS will become extinct in our kids.”

Lee-Hahn said legislative debate about children suffering from disease ought to include conversations about vaccination injuries and the notion of holding vaccine manufacturers liable for negative ramifications.

“We cannot keep injecting our children with poison and increasing the vaccines given and then wonder why we have an epidemic of undiagnosed diseases,” Lee-Hahn said.

The House bill moved to the Senate for consideration and would be subject to review by Gov. Laura Kelly. Under the House bill, the state would submit by March 2023 a report on the pilot project. The 2023 Legislature would have opportunity to decide whether coverage of PANS and PANDAS ought to be part of all health insurance policies on or after July 2024.