Virginia PANS PANDAS Updates

virginia update aspire w


Virginia PANS PANDAS Updates

Virginia Alliance for PANS/PANDAS Action (VA4PA) is leading legislative efforts. Please contact them directly for more information. Their website is VA4PA and their email is Please follow their Instagram and/or Facebook, which they update frequently with updates and information.

General Legislative Information

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HB514, which calls for the reinstatement of the Governor’s Council on PANS/PANDAS, passed unanimously in the Virginia House of Delegates and will be heard in the Senate’s Health subcommittee in the upcoming weeks. HB513, which calls for insurance and Medicaid coverage for doctor-prescribed treatment for PANS/PANDAS, was tabled in subcommittee and is being sent to the Health Insurance Reform Commission for review–and this is the exciting part–on an expedited basis, given the urgency of the issue and the need for early medical intervention. 
Del. Joe McNamara said: “This is the best thing that can happen with the bill. I also serve on HIRC, and I will commit to you … that we will do anything in our power to expedite the process.”
Del. Rip Sullivan, D-Arlington, another HIRC member, said he would also work to expedite the process.

Del Patrick Hope, our bill patron, told the Mercury he thinks the commission has enough data to decide on the legislation by the end of this year instead of requiring it to undergo the typical two-year-long process.


View General Assembly Hearing

Testimony provided to the Virginia General Assembly: View Here

In the News


2 Past Call to Action Tasks for HB513 & HB514

PANS/PANDAS Advocacy Day

Date: February 6th
Start Time: 9:00 AM
Location: 201 N 9th Street, Richmond

Bill HB513 and HB514 are in!!! It is time to gather in Richmond and let our voices be heard. Save the Date! Virginia PANS/PANDAS Community will join in Richmond (General Assembly) to meet with legislators and talk to them directly about our bill, and our need for their support.

Let VA4PA know you are coming: Write Count Me In into their FaceBook post or Instagram post.

Contact Your Legislators Today
Write and Call Your Delegate and Senator

Once you have emailed your Delegate and Senator, please call their office to ask them to support these two bills. You can be brief. You can speak to their office staff or leave a message instead of talking directly to your Delegate or Senator. You can find your Delegate’s and Senator’s contact information above in How to Get Started.

Sample Letter from VA4PA below – You can simply fill in your information or you can write your own letter but please follow the Talking Point Tips below.

ASPIRE Board and Professional Advisory Board Testimony Letters:

Dear Delegate/Senator – FILL IN THEIR NAME,


I am writing as a supporter, constituent, and resident of this great commonwealth. I would like to provide you with awareness of a devastating childhood/young adult illness affecting many Virginian families and ask for your support of two House bills ( HB513 and HB514 ) introduced by Delegate Patrick Hope, addressing these needs.

What are PANS and PANDAS?

PANS and PANDAS are immune-mediated disorders affecting young people in which the immune system mistakenly attacks healthy brain tissue, resulting in life-altering brain inflammation and disabling physical and mental ailments.

The illness is triggered by common infections such as strep throat and the flu.
Left untreated, PANS and PANDAS can result in lifelong disability, rendering individuals unable to function in society, and can even lead to loss of life. Patients can return to baseline with early diagnosis and treatment.

On Jan. 9, 2024, Delegate Hope introduced legislation (Bills HB513 and HB514), mandating coverage for standard-of-care treatment and the reinstatement of the PANDAS/PANS Advisory Council.

My family will be grateful to know we can count on your support in this effort. Please let me know if you would like to discuss this in more detail.



Link to the recent press release:

About HB513 & HB514


Medical assistance services and health insurance; state plan for payment for PANDAS and PANS.

State plan for medical assistance services and health insurance; pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome. Directs the Board of Medical Assistance Services to amend the state plan for medical assistance services to include a provision for payment of medical assistance for the prophylaxis, diagnosis, and treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) and pediatric acute-onset neuropsychiatric syndrome (PANS) that includes payment for treatment using antimicrobials, medication and behavioral therapies to manage neuropsychiatric symptoms, immunomodulating medicines, plasma exchange, and intravenous immunoglobulin therapy.

HB 513 Summary Page: Link

Introduced by: Patrick A. Hope



Pediatric Autoimmune Neuropsychiatric Disorders Assoc. w/ Strep Infections, Adv. Council on; sunset.

Advisory Council on Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and Pediatric Acute-Onset Neuropsychiatric Syndrome; sunset. Extends from July 1, 2020, to July 1, 2028, the sunset of the Advisory Council on Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and Pediatric Acute-Onset Neuropsychiatric Syndrome.

HB 514 Summary Page: Link

Introduced by: Patrick A. Hope

Talking/Writing Point Tips


Written & Oral Testimony: Please follow the general guidelines for talking with your legislator and providing written or oral testimony. Please see example letters for About PANS/PANDAS and Personal Impact Statement.

  • Address your letter correctly: i.e., Dear Senator Last Name or Dear members of the [Name of] Committee
  • Include your full name and address
  • Double-check that you have the correct bill and name
    Please share relevant details that pertain to the bill, but do not overshare personal information.

Tell Your Story: Describe how delayed treatment or the inability to treat has affected the patient’s daily life, including symptoms and functioning. Include information on how lack of insurance ultimately affects the patient and the entire family. Stay focused. Be concise. Only discuss matters relevant to this bill. 

  • Key Topics: Throughout the discussion of the Key Points below, include how these topics impact you and your family’s well-being.
    • Overall Impact Statement – Provide an overall impact statement on the patient’s and family’s emotional, physical, and financial health. Assume this may be all the legislators read. This should be a short paragraph summarizing how the lack of insurance for PANS/PANDAS has impacted the patient’s and the family’s life. This can be used as a stand-alone statement or as an introductory paragraph to a longer testimony letter.
    • Impact of Not Accessing Appropriate Treatment (Medical, Financial, Societal, Emotional)
      • Impact of misdiagnosis
      • Impact of not accessing PANS/PANDAS literate providers
        • Due to a lack of education/awareness
        • Due to a lack of insurance-based providers
      • Impact of Delaying or Denial of Appropriate Treatment
    • Financial Impact: Explain how these issues have affected your financial well-being.
      • Out-of-pocket medical expenses: detail how much
      • Employment issues: unemployment, reduction of hours, or unpaid time off, EFMLA/FMLA
        • Did you lose your job, reduce hours, or take unpaid leave regularly?
        • Detail amount of lost wages
        • Detail duration of employment issues
        • If you took EFMLA/FMLA, specify the duration and toll on your career.
      • Were you unable to provide appropriate medical treatments due to the lack of insurance?
      • Did you have to sell or refinance your home or other assets?
      • Family Impact: Include how financial issues impacted you and your family’s well-being
    • School Impact: Discuss the impact on your child’s performance at school, the need for accommodations like a 504 plan or IEP, homebound instruction, and absenteeism.
      • Impact on school performance.
      • Did your child require any of the following school services: 504, IEP, Homebound/Home Hospital, special needs outplacement, tutoring, etc
      • Attendance Issues:
        • Roughly how many days of school has your child missed yearly?
        • Homebound/Home Hospital – If yes, what was the duration
        • Homeschool – If you chose to homeschool, please include information on why, for how long, and the impact on the family
      • Were appropriate supports denied due to a lack of awareness by school staff?
      • Out-of-pocket expenses: Detail amount spent on advocates, lawyers, tutoring, testing, etc
      • Family Impact: Include how issues at school impacted you and your family’s well-being
    • Lack of Insurance Coverage Impact:
      • Did the patient have to forgo having necessary appropriate treatment due to the lack of insurance coverage?
        • What was the impact on their health?
        • How has this changed the trajectory of their illness and future?
        • What was the impact on the family?
      • Quantify the number of denials
      • Described cited reasons for denials
    • For Providers:
      • Discuss how lack of insurance coverage affected your ability to practice medicine
  • Do Not Discuss:
    • Other medical issues not relevant to this bill (for example, standards of care for comorbid health issues, vaccines, etc.)
    • Personal issues that do not pertain to this bill

Short Form Support Emails

Short requests for support are also incredibly important to ensure we have adequate numbers of people emailing their legislators. These can be as simple as any of the examples below. Please ask everyone you know to send versions of these suggestions to their legislators.

  • Please support Bill Number so that every family impacted by PANDAS or PANS can have hope for a better future.
  • Support Bill Number to aid Tennessee’s children, like my child, who battles PANS/PANDAS. Treatment costs have reached tens of thousands of dollars, forcing us to [Provide an example that applies to your situation: tap into our home equity, quit my job to provide full-time care to my child, who is too sick to attend school, etc.]. Let’s prioritize our children’s well-being.
  • Please vote YES on Bill Number to alleviate the immense suffering faced by families dealing with PANS/PANDAS. The financial hardships for the families and the state are unsustainable without insurance coverage.
  • Please support Bill Number. PANS/PANDAS is a devastating but treatable disorder. Please help my [child, grandchild, student, friend’s child, etc.] who access appropriate insurance-based medical treatment so [he, she, they] can stop suffering needlessly.
  • Please vote yes to pass Bill Number. I have witnessed firsthand in my PANS/PANDAS students the difference that treatment makes. Access to treatment will help enable children to reach their full potential. Students without treatment, more often than not, require long-term, expensive special education services. Students who receive appropriate treatment stay in mainstream education; some only require a 504 plan, while some cease to need services.


From Press Release


New VA General Assembly Legislation Targets Devastating Illness Hitting Young People

“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. The cost of inaction is untenable,” Delegate Hope says. “This illness literally robs young people of their lives and creates an unconscionable and unsustainable burden on them and their families. I call on my fellow legislators as public servants whose duty it is to protect all our citizens, especially the young and most vulnerable, to join me in this critical effort.”

Previous Calls to Action


Currently, VA4PA has bills almost ready to present to the VA General Assembly. They are requesting Virginia residents to contact their state legislators to let them know about PANS/PANDAS and the upcoming bills.  You can find your state representatives via our State Legislator Finder.

VA4PA has a sample letter for you to work from.

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