TOPEKA — Shannon Wright’s daughter suddenly exhibited bizarre behavior on September 13, 2011, which was later found to be a rare autoimmune disease in which streptococcus or another infectious agent caused antibodies to mistakenly attack the girl brain.
The ramifications of such a vicious assault on the brain were immediate, Wright said, but treating the disease presented a mystery. Her daughter wavered between fetal positions in the corner of the sofa, screaming and sobbing uncontrollably, running around the house to check the locks and see if everyone in the family was safe. She was aggressive at school and demanded to be put to death by her parents.
“All I could do was hug her and rock her as she begged me to stop the unseen terrors,” said Wright, a youth social worker. “The sudden change in my normally sweet 9-year-old daughter happened with such intensity and ferocity that I felt like the wind had cut me off.”
Health professionals recommended antipsychotic medication and enrollment in mental health programs. Conventional alternatives also included antibiotics, steroids, and behavioral therapy. While searching the internet for an explanation for this catastrophic turn of events, Wright came across references to sudden-onset obsessive-compulsive disorder and links to conditions abbreviated as PANS or PANDAS.
“It was the magic word combination,” Wright said. “PANDAS appeared on my screen. Reading the description, I literally stood up and shouted ‘This is it!’
This led to doctors in Chicago and two rounds of expensive, non-insurance-covered IVIG or intravenous immunoglobulin treatments. The cost of the first round was $10,000, which was put on a credit card. After a relapse, the second round cost $12,000, which was paid for with the help of donors. Her daughter responded to therapy and her brain began to heal. She regained her footing and returned to normal school classrooms. She planned to go to college.
“No other treatment attempt has brought the healing that IVIG brought to Alyson. It slowly came back to us,” Wright said.
Rep. John Eplee, an Atchison Republican and family physician for more than four decades, sought for four years to convince the Kansas Legislature to launch a rigorous evaluation to determine if it was in the best interest of the State to require insurance companies to cover IVIG treatment for children who have contracted PANS or PANDA and could not be helped by other medical interventions.
The process in Kansas begins by reviewing the experience of other states that have adopted IVIG therapy for this disease. The next step is a pilot project in Kansas to understand the scope of such a mandate. With this information in hand, the legislature would weigh the pros and cons of a statewide insurance mandate.
The expected increase in insurance premiums was estimated at less than 1%. House Bill 2110, which passed the Kansas House by a 113-8 margin last week, would require the state employee health plan to run the pilot to determine demand for IVIG treatment in Kansas. One estimate put the immediate cost of the pilot at $500,000.
“It’s a very serious disease,” Eplee said. “It has a very, very rough onset. Your child is normal at night when you put him to bed and the next morning he wakes up and he has deep fears, he has OCD, he has deep food restrictions, he has anxiety about separation from parents and loved ones.”
He said about 1 in 200 children get PANS, or Pediatric Acute Neuropsychiatric Syndrome, and PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep Infections. Maybe 1 of those 400 young patients would benefit from IVIG.
“If this child is not treated, he will be permanently – and I mean permanently – psychiatrically affected,” Eplee said.
Rep. Randy Garber, R-Sabetha, said he opposes the pilot project designed to test whether the state health insurance plan can absorb the financial impact of treatments helpful to the Wright family. He voted against the bill along with seven other state officials.
“While my heart goes out to the families who will experience this terrible health condition, I cannot in good conscience appropriate the money that constituents in my district have donated to the state to fund our government and spend it on another cause,” Garber said. “That would, in my opinion, be a violation of the oath of office that 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 the potential danger of childhood vaccinations.
“I voted in honor of every family in Kansas who suffered in silence,” she said. “I hope we can eventually focus on the fundamental problem of vaccine injuries and that PANDAS will disappear in our children.”
Lee-Hahn said legislative debate about children with illnesses should include conversations about vaccine-related injuries and the notion of holding vaccine makers accountable for negative ramifications.
“We can’t keep injecting poison into our children and increasing the vaccines given and then wondering why we have an epidemic of undiagnosed diseases,” Lee-Hahn said.
The House bill has been sent to the Senate for consideration and would be subject to Governor Laura Kelly’s consideration. Under the House bill, the state would submit a report on the pilot project by March 2023. The 2023 legislature would have the opportunity to decide whether coverage for PANS and PANDAS should be part of all health insurance policies beginning in July 2024.