The “devastating” childhood illness can cost affected families hundreds of thousands for treatment.
A bill in Virginia is being studied by the state Health Insurance Reform Commission for the coverage of treatment for PANS/PANDAS, a mainly childhood neuropsychiatric disorder.
The examination of the bill follows a unanimous tabling in a House subcommittee earlier this month.
The legislation was proposed by House Delegate Patrick Hope (D-Arlington) and would require private health insurance and Medicaid to provide coverage for PANS/PANDAS treatment in order to lower the cost families must face upon diagnosis. Scientists believe that this disease is caused when a child’s brain is attacked by their immune system.
What is PANS/PANDAS?
The illness typically begins with the contraction of strep throat or influenza by a child. Those conditions can suddenly develop into PANS/PANDAS. Symptoms include aversion to food, tics, and obsessive-compulsive behaviors. These symptoms frequently lead to misdiagnosis, which means that the start of treatment is often delayed. Unfortunately, the longer a child waits to begin treatment, the more likely it is that their symptoms will be permanent.
How common is it?
It isn’t known exactly how common PANS/PANDAS is. Estimates from the Health Commission in California say that about 1 in 10,000 kids have it. That said, the Texas PANS/PANDAS Advisory Council’s estimates are that 1 in 10 children with obsessive compulsive disorder have the disease. This would make the Texas estimate closer to 1 in every 2,000 kids.
Health insurance to help with treatment costs
There is no single treatment coverage or cost associated with treating PANS/PANDAS in a child. That said, advocates who spoke at the Virginia subcommittee hearing described the disease as “devastating” and said that the costs they faced ranged from a few thousand dollars to hundreds of thousands of dollars. Families can be forced to sell their homes to be able to pay for their children’s treatment.
State lawmakers voted unanimously to send the bill to HIRC, which examines large changes to required coverage by the state’s health insurance plans before those bills can be considered by the General Assembly.
If the review is completed in 2024, it can be part of the 2025 session and will be backed by the data from the examination.
