New VA General Assembly Legislation Targets Devastating Illness Hitting Young People

Two new bills introduced on Jan 9, 2024, in the VA General Assembly by Delegate Patrick Hope (D-1) take aim at the debilitating post-infectious neuroimmune disorders, known as PANS and PANDAS, that are ravaging young people across the Commonwealth.

PANS and PANDAS are immune-mediated disorders triggered by common infections such as strep throat and the flu. Following infection, the immune system mistakenly attacks healthy brain tissue and results in life-altering brain inflammation and disabling physical and mental ailments. The illness typically hits young people. Left untreated, PANS and PANDAS can result in lifelong disability and can even lead to loss of life. Early diagnosis and treatment are essential to return patients to baseline.

Bills HB513 and HB514 call for private insurance and Medicaid coverage for the diagnosis and treatment of Post-Infectious Neuroimmune Disorder/Immune-Mediated Neuropsychiatric Disorders, as well as the reintroduction of the Governor’s PANDAS/PANS Advisory Council.

“The toll of these illnesses on our young people and families is just extraordinary,” says Del. Hope, a health policy expert recently re-elected to his 8th term. “This is a crisis no one knows about…until you know. Hearing the stories from constituents across the state, I’ve been struck not only by the devastating impact of the illness, but more egregiously, the impact of insurance denial of coverage for diagnosis and treatment, particularly when early intervention is so critical.”

Despite cutting-edge research and the clear medical necessity, Virginia health insurance companies routinely deny doctor-prescribed testing and treatments.