Katie Riesner had never heard of PANDAS when her son was diagnosed with the autoimmune neuropsychiatric disorder at 5 years old.
The Catonsville resident knew it was more than just the “terrible twos.” Periodically, her son’s typically sweet temperament would shift. He would become aggressive and his behavior “wild,” usually during the winter, Riesner said. Doctors told her that Henry had autism, but “it just didn’t make sense,” she thought.
One day, she and her husband made the connection that “when the behavior got really wild, eventually we’d go to the doctor for something and they would test him and he’d have strep throat … every time,” she said.
When a physician finally diagnosed Henry in 2018, Riesner began to understand her son was suffering from a Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections, a little-known syndrome for which costly treatment is not mandated to be covered by insurers in most of the country.
“People are mortgaging their houses, emptying their retirement accounts” to pay out of pocket for treatment, Riesner said. “You have people going bankrupt over this just to try to get their kids back.”
That realization led Riesner to make contact in late 2018 with her state representative, then-Del. Charles Sydnor III.
“This is ridiculous,” Riesner told him. “Why do our kids not have this protection?”
The ordeal landed Riesner and dozens of other parents and children with PANDAS in the State House in 2019, testifying before legislators — and against insurance lobbyists — about their numerous insurance denials, the difficulty of finding a health care provider to treat the disorder in Maryland, and the staggering out of pocket costs for treatments like intravenous immunoglobulin (IVIG) therapy.
Sydnor withdrew the 2019 bill so that a work group convened by the Maryland Insurance Administration could study it further and make recommendations to craft a new bill in the 2020 session.
“It felt like a failure at the time,” Riesner said.
But in the final hours of the state legislature’s 2020 session, bills mandating coverage from certain large group insurers and Medicaid for PANDAS treatment passed both chambers unanimously in a slew of more than 600 bills, paving the way, advocates hope, for smaller private carriers to follow suit.
“It was not a smooth sailing as I thought it was gonna be at the beginning of the session,” said Sydnor, who is now a state senator, but “we got it out and the clock didn’t run out on us. Those families, they did an outstanding job of advocating for themselves.”
To Riesner, the “small group of special needs moms that went up against insurance lobbyists” felt like a “David and Goliath situation."
“For us to make this happen, it was unbelievable,” she said.
The term PANDAS, or PANS (which stands for Pediatric Acute-onset Neuropsychiatric Syndrome) was coined in the 1980s by researchers at the National Institute of Mental Health who found a link between abrupt-onset obsessive compulsive disorder and streptococcus.
In children with PANDAS, strep throat triggers inflammation of the brain, resulting in symptoms like tics, personality changes such as sudden aggression, hyperactivity, restrictive eating and anxiety.
The symptoms vary among those who have the syndrome. For Laura Murdock’s son Lucas, an onset of symptoms would cause him to think about suicide, show signs of attention-deficit disorder and run away from home.
The 11-year-old was misdiagnosed with bipolar disorder, attention-deficit disorder and sensory processing disorder before a physician in October 2019 realized the connection between Lucas’ neurological symptoms and strep infection.
“Within 24 hours of having an antibiotic, my son was laughing, smiling, happy,” Murdock said. “That’s how we found our diagnosis was PANDAS.”
Lucas was one of just a few kids to testify about the syndrome before legislators when he addressed the Senate Finance Committee about his own experience this year.
It was about “getting the message out,” the Boonsboro boy said. “That IVIG works, and it should be covered by insurance, 'cause kids are dying and they need it.”
Lucas is being treated with monthly infusions of IVIG, considered an experimental therapy for PANDAS patients, but with demonstrated success in treating other autoimmune disorders. Murdock says her insurer, BlueCross BlueShield, covers the treatment, which can cost around $10,000.
“I don’t know how or why we got approval, but we did,” Murdock said, adding the treatment is significantly improving her son’s symptoms.
Riesner is entering the 10th month of an appeals process with her insurance company to secure coverage for the same infusions for Henry after his symptoms began worsening last summer, leaving him unable to eat.
“He needs this and it’s very challenging,” she said.
Because Riesner’s insurance carrier does not fall under the mandate, the bill — which would go into effect January 2021, pending Gov. Larry Hogan’s signature — “was never gonna impact me directly,” she said. “But it was the right thing to do, to try to help with this. And hopefully, eventually, the other insurance companies will get in line and realize how critical this treatment is for our children.”
The coronavirus pandemic has put Riesner and Murdock on edge. Riesner has relocated to her parents’ house in a rural part of the Eastern Shore to limit Henry’s potential exposure. Murdock and her husband, both Montgomery County firefighters, have not been to work in three weeks.
It’s not known how COVID-19 would affect PANDAS patients, but they are in a high-risk category. For Henry, even seasonal allergies can trigger the inflammation.
“We don’t know what this is gonna look like, if he gets exposed” to coronavirus, Riesner said.