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What we do & why

VA4PA is engaged in a multi-pronged effort to pass legislation in the state of Virginia to require private insurance and public coverage for doctor-prescribed diagnosis and treatment of PANS/PANDAS, while simultaneously working to ensur that Virginia's medical community and educational system are sufficiently informed about PANS/PANDAS to take timely, appropriate action.

  

Our effort is 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 11 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 PANS/PANDAS inflamed brain logo
Map of states with PANS_PANDAS legislation 2-22-24

VA4PA is fighting the profound lack of awareness about PANS/PANDAS and the denial of insurance coverage for diagnostics and treatments.

Legislation

On January 10, 2024, our patron, Delegate Patrick Hope (D-1), introduced into the Virginia House of Delegates two bills on behalf of VA4PA.

  • HB513 calls for insurance coverage for the diagnosis and treatment of PANS/PANDAS. The bill was "tabled" by the House Labor & Commerce Subcommittee on Feb. 6, 2024, with a public commitment to expedite the mandatory state review.  more>>
     

  • HB514 extends the sunset of the Governor's Advisory Council on PANDAS/PANS to 2028. The bill passed in the Senate on Feb. 26, 2024, in a unanimous, bipartisan vote and is headed to the Governor for signature to become law.  more>>

Click here to watch our HB513 hearing testimonials. 

VA4PA shares positive legislative results in Virginia
Virginia General Assembly HB514 passed with unanimous and bipartisan support

Through inaction, Virginia is 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.

Who we are

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 is fighting to ensure that every Virginian has access to private insurance or Medicaid coverage for the timely diagnosis and treatment of PANS/PANDAS, as well as working to improve awareness, detection, and treatment of the disease.  TEAM & PHOTO GALLERY >>

What we do
HB513 & HB514
The cost of inacton

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/PANDAS at a glance

PANS - PEDIATRIC ACUTE-ONSET NEUROPSYCHIATRIC SYNDROME
PANDAS - PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDER ASSOCIATED WITH STREPTOCOCCAL INFECTIONS

  • PANS and PANDAS are immune-mediated disorders in which the immune system attacks healthy brain tissue, resulting in life-altering brain inflammation.

  • PANS and PANDAS are often associated with bacterial and/or viral triggers.

  • 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.

  • For many, the onset is sudden and dramatic.

  • 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.

  • Early diagnosis and treatment are essential to return patients to baseline.

Symptoms of PANS/PANDAS
News & resources

News & resources

VA4PA in the news

Virginia Mercury news article about PANS/PANDAS legislation
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HB513 HB514 press release
VA4PA factsheet
Loudon Times shares a story about a local parent and VA4PA legislative advocacy efforts
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Aspire covers VA4PA updates
Governor Youngkin 2023 PANS/PANDAS Awareness Day
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