Who we are
The Virginia Alliance for PANS/PANDAS Action (VA4PA), launched in March 2023, is a grassroots community of parents, patients and other advocates from all corners of Virginia and beyond. VA4PA's mission is to fight to ensure that every Virginian has access to private insurance or Medicaid coverage for the timely diagnosis and treatment of PANS/PANDAS.
And on March 18, 2025, we WON! Our bill HB1641—which mandates private insurance and Medicaid coverage for the diagnosis and treatment of PANS and PANDAS—passed unanimously in the General Assembly and was signed by the governor. The new law takes effect on July 1, 2025.
VA4PA's work to improve awareness, detection, and treatment of the disorders continues.
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What we do & why
Since 2023, VA4PA has been working to pass legislation in the Commonwealth of Virginia to require private insurance and Medicaid coverage for doctor-prescribed diagnosis and treatment of PANS/PANDAS, while simultaneously working to ensure that Virginia's medical community and educational system are sufficiently informed about PANS/PANDAS to take timely, appropriate action.
Our efforts have been driven by the profound lack of awareness about PANS/PANDAS and the systemic denial of insurance coverage for standard-of-care diagnostics and treatments per published guidelines for the care of patients—already covered in the 12 states that have passed insurance/Medicaid legislation—and the daily reality of witnessing the preventable, permanent damage children and young adults sustain due to lack of appropriate diagnosis and care.
VA4PA fought and won the battle to secure insurance and Medicaid coverage for the diagnosis and treatment of PANS/PANDAS in the state of Virginia. Our efforts now focus on addressing the profound lack of awareness about PANS/PANDAS among the medical community, schools, and other entities across the Commonwealth.
Legislation
In January 2024, VA4PA’s first insurance bill, HB513, was successfully introduced in the VA House of Delegates by our patron, Delegate Patrick Hope (D-1). VA4PA advocated heavily to build awareness of our issues and the urgency of our ask. Following a successful online testimonial campaign, an in-person Advocacy Day in Richmond with testimony from a dozen VA4PA members, and social media and media campaigns, the House Labor and Commerce Subcommittee voted to fast-track review of our bill by the VA Health Insurance Review Commission (HIRC). Click here to watch our HB513 hearing testimonials.
VA4PA ensured that the VA Bureau of Insurance (BOI) and the Joint Legislative Audit and Review Commission (JLARC), whose work feeds into the HIRC, were informed of the latest research, laws passed in other states, state cost estimates of coverage, and the social and financial costs borne by families. The BOI ultimately estimated the cost of insurance coverage for treatment of PANS/PANDAS to be $0.0046–less than half a cent per member per month.
The HIRC voted unanimously In Dec. 2024 to recommend our bill for reintroduction in the 2025 session, with the addition of Medicaid coverage. HB513 was revised and reintroduced by Delegate Hope as HB1641 on Jan. 3, 2025. Thanks to the extraordinary outreach from VA4PA's grassroots members, we garnered bipartisan sponsorship of our bill from 37 members of the General Assembly.
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HB1641 made its way through several committees and subcommittees before reaching a vote on the House floor in early February. Members of that chamber supported our bill unanimously and sent it to the Senate for consideration.
With continuous public and behind-the-scenes advocacy from our group, HB1641 moved through the Senate in two weeks, just before the cutoff to finalize legislation to send for the governor’s signature. With a final vote of 40-0, our bill received unanimous bipartisan support, a testament to the urgent need for our young people to receive a proper diagnosis and appropriate treatment.
On March 18, our bill was signed into law, making Virginia the 13th state to mandate insurance coverage for PANS/PANDAS! Read our press release here.
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Throughout the bill’s journey, members of VA4PA stepped up to reach out to their legislators, provide on-line and in person testimonial, and sign our petition. This group of desperate parents throughout the state stood up for what was right and succeeded! See petition here.
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Our other bill, HB514, calling for the reinstatement of the Governor’s Council on PANS/PANDAS, was passed and signed into law in May 2024. The Council successfully kicked off in November 2024, with VA4PA co-founder Krissie Nunnally representing a PANS/PANDAS advocacy group. VA4PA provides inputs into the Council’s work.
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Through inaction, states are paying anyway.
Our goal is to ensure that Virginians diagnosed with PANS/ PANDAS receive the best that our healthcare system has to offer—not a lifetime of pain, disability, debt and symptom management.
The cost of inaction
PANS/PANDAS patients typically endure months, if not years, of misdiagnosis, resulting in irreversible brain inflammation with associated profound disabilities. Permanent neurological damage may result in permanent dependence on the state. Suicides have occurred, in both affected individuals and their despondent parents. Most of the time, at least one parent must stop working to care full-time for the ill child, siphoning tax revenue away from the state. Desperate families sell their homes to pay for medicine out-of-pocket and move out of state in search of insurance coverage.
Police, ER, and child protective services are commonly involved as symptoms become increasingly erratic, adding to the state's expenses. Patients may be hospitalized medically or psychiatrically, resulting in more costs and unnecessary suffering due to inappropriate medical treatment. Children may require 504s, IEPs, and in some cases prolonged and intensive accommodations such as home hospital school (homebound education)--also at the expense of the state.
PANS/PANDAS at a glance
PANS - PEDIATRIC ACUTE-ONSET NEUROPSYCHIATRIC SYNDROME
PANDAS - PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDER ASSOCIATED WITH STREPTOCOCCAL INFECTIONS
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PANS and PANDAS are immune-mediated disorders in which the immune system attacks healthy brain tissue, resulting in life-altering brain inflammation.
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PANS and PANDAS are often associated with bacterial and/or viral triggers.
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The symptoms vary from child to child and typically include obsessive compulsive behaviors, restrictive eating, tics, cognitive decline, learning difficulties, headache, nerve, muscle and joint pain, severe behavioral issues, anxiety, insomnia, loss of motor control, and urinary frequency and incontinence.
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For many, the onset is sudden and dramatic.
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These disorders rob young people of who they are, rendering them suddenly unable to leave the house or intensely phobic with life-threatening anorexia and OCD. Untreated, these disorders impact and compromise the quality of life of adults suffering from PANS/PANDAS.
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Early diagnosis and treatment are essential to return patients to baseline.
News & resources
VA4PA in the news
VA4PA resources
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PANS/PANDAS resources
