Va. commission to review mandatory insurance coverage for 'devastating' childhood disease

A bill that would require insurers in Virginia to cover treatment for a neuropsychiatric disorder that primarily affects children will be studied by the state Health Insurance Reform Commission after being unanimously tabled in a House subcommittee this week.

The legislation from Del. Patrick Hope, D-Arlington, would have applied to both Medicaid and private insurance as a way to lower the treatment costs for PANS/PANDAS, a disease  scientists believe is caused by a child’s immune system attacking their brain.

Kristina Nunnally with the Virginia Alliance for PANS/PANDAS Action, or VA4PA, told a House subcommittee her family has lived a “life in crisis” as insurance companies have repeatedly denied her four children, all of whom have been diagnosed with the disease, treatment prescribed by their neurologist.

“Many years waiting for the delay in treatment has resulted in the permanent scarring on our children’s brains,” Nunnally said. “The delay of treatment comes at the cost that is the life of a child and what their lives could have held for them, and the trajectory of their lives have forever changed.”

PANS/PANDAS typically starts when a child contracts influenza or strep throat, which can then suddenly develop into the disease. Symptoms can include obsessive compulsive behaviors, aversion to food and tics, which can often lead to misdiagnosis and further delay appropriate treatment. The longer the child goes without treatment, the greater the likelihood their symptoms can become permanent.

The exact prevalence of the disease remains unknown. California’s Health Commission determined about one out of 10,000 children have it, whereas the Texas PANS/PANDAS Advisory Council estimates one out of every 10 kids with obsessive compulsive disorder have it, which would be about one out of every 2,000 children.

The cost for treatment can also vary from child to child, but advocates who spoke at the subcommittee hearing said it can be “devastating” and range from a few thousand dollars to hundreds of thousands, which can sometimes result in families selling their homes to pay for it.

Daniela Sarkar, a clinical psychologist with VA4PA, said her son hasn’t left the house after contracting the disease, which led her to stop working to care for him.

Lawmakers voted to send the bill to HIRC, which vets large changes to Virginia’s requirements for what insurance plans in the state must cover before they go to the General Assembly for consideration.

Subcommittee chair Del. Joseph McNamara, R-Roanoke, said tabling the legislation was a “painful decision,” but it didn’t mean the bill was a failure.

“This is the best thing that can happen with the bill,” McNamara said. “I also serve on HIRC, and I will commit to you … that we will do anything in our power to expedite the process.”

Subcommittee member Del. Rip Sullivan, D-Arlington, another HIRC member, said he would also work to expedite the process.

Hope told the Mercury he thinks the commission has enough data to make a decision on the legislation by the end of this year, instead requiring it to undergo the typical two-year-long process.

If the review is completed this year, he said, “we can go into session in 2025 and the bill will include [the data], and we can have all the evidence we need to vote for it.”

Another bill from Hope, which would reinstate a working group on ways to raise awareness of and provide resources on PANS/PANDAS, unanimously passed the House.

This story has been updated to correct Kristina Nunnally’s name.

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This article first appeared on Virginia Mercury and is republished here with permission. Virginia Mercury is part of States Newsroom, a network of news bureaus supported by grants and a coalition of donors as a 501c(3) public charity. Virginia Mercury maintains editorial independence.