Virginia to mandate insurers to cover PANS/PANDAS treatment

March 18 was a day of triumph and relief for Virginia families of children living with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). Virginia Gov. Glenn Youngkin signed HB1641 into law, making Virginia the 13th state to mandate that both private health insurers and Medicaid cover the diagnosis and treatment of these conditions.

PANS and PANDAS are rare but debilitating conditions that often begin suddenly and without warning, triggered by infections like strep throat or even the common cold. In these disorders, the immune system mistakenly attacks the brain, leading to severe and life-altering symptoms such as obsessive behaviors, tics, cognitive decline, severe anxiety and even loss of motor control.

Lack of diagnosis and treatment affects not just the families affected but also places a burden on schools, police, health care systems and even insurers, who pay for unnecessary treatments that attempt to address only symptoms rather than the root cause. For years, insurance companies have repeatedly denied coverage for treatments proven to help.

Dr. Daniela Sosa-Sarkar, a mother and co-founder of the Virginia Alliance for PANS/PANDAS Action (VA4PA), understands this struggle all too well. “Insurers often deny coverage for doctor-prescribed treatment, despite the fact that early intervention can heal patients,” she says. “Delays in treatment can lead to permanent disability or worse.”

For families like those of 8-year-old Emma, whose once-bubbly daughter became withdrawn and unable to function due to PANS, now have hope for a brighter future. “We knew something was terribly wrong, but we kept running into roadblocks with insurance,” Emma’s mother, Jenna, shares. “It was heartbreaking to watch her suffer without getting the care she desperately needed. This law will mean that other families won’t have to go through the same struggle.”

Delegate Patrick Hope, who introduced the bill, worked tirelessly alongside VA4PA and families like Jenna’s to get the legislation passed. “I’ve seen firsthand how devastating PANS/PANDAS can be for these families,” Hope says. “The more you understand this illness, the more you realize that every delay in treatment puts children’s futures at risk. I’m proud that Virginia is now leading the way in making sure kids get the help they need.”

For those who have been advocating for years, like Sosa-Sarkar, this moment is joyous. “Today is a happy day for those of us who have fought for so long,” she says. “But it’s more than just us—it’s about every child who will now receive the care they deserve. This law will change lives.”

Families across the country are hopeful that the success in Virginia will inspire other states to follow suit, ensuring that children with PANS/PANDAS have access to the care that could mean the difference between lifelong struggle and recovery.

For parents like Jenna, this law represents a new chapter. “It feels like a weight has been lifted,” she says. “Our daughter can finally get the treatment she needs, and we know that families across Virginia will now have one less thing to worry about.”