West Virginia PANS PANDAS Updates

west virginia update aspire wWest Virginia PANS PANDAS Action Updates

Currently, there is a proposed PANS PANDAS bill in the Senate 
Senate Bill 236 to require health insurance for PANS PANDAS. It is not the first year an insurance bill has been proposed. Our PANS PANDAS community must unite and participate. First, the Senate Health and Human Resources Committee needs to put a hearing on the agenda. Below are our first two Call to Action items. First, we need to request a hearing. While we wait to see if a hearing is granted, please prepare your letter of testimony for the hearing It is not hard to write a letter requesting support for this bill. If the committee votes the proposed bill out of their committee, you may need to submit your letter again. So, please be aware there may be several Calls to Action. Please read the information below on our next steps.

Please follow this page and ASPIRE’s social media for updates – Facebook and Instagram. Please email Debbie Nelson with questions regarding West Virginia legislative efforts and ways you can get involved beyond the Calls to Action.

General Legislative Information

pans pandas legislative action legislation insurance mandate aspire

Call To Action
  1. Call and email the Chair, Vice Chair, and Members of the Senate Health and Human Resources Committee. You can also contact the entire committee. If your state representative or state senator is on this committee, it is important to let them know you are their constituent. 
  2. Call or Email your District Legislators. Even if they are not on the committee, please also call your state representative and state senator and ask them to support this bill
  3. Email your Personal Impact Statement and ask for a hearing to the Chair, Vice Chair, and members of the Senate Health and Human Resources Committee, and cc your district legislators. See here for Talking Points.  See below for Legislator email addresses.
  4. Enlist Help! ask everyone you know in West Virginia if they will send their district legislators and committee members a short note requesting support for Bill #. Include Friends, Family, Teachers, Doctors, Therapists, etc. See below for examples of Short Form Support Emails.

Call Example: Below is a very short message. For more Talking Points, see below

My name is X, and I am a (provider, parent, teacher, self-advocate, etc.). I urge the Senator/Representative to support Bill # on behalf of my family and other families in West Virginia.

    SB 236

    Bill Information:  Senate Bill 236 – Coverage for treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome and other autoimmune encephalopathies.

    Lead Sponsor: Rucker

    Bill Status: SB236

    Requiring coverage of treatment for certain pediatric autoimmune neuropsychiatric disorders in certain circumstances

    Referred to: Senate Health and Human Resources 

    Emails for Senate Health and Human Resources Committee and Chair Senator Maroney:

    Dear Chair Senator Maroney and the Senate Health and Human Resources Committee,

    mike.maroney@wvsenate.gov; tom.takubo@wvsenate.gov; mike.azinger@wvsenate.gov; laura.chapman@wvsenate.gov; vince.deeds@wvsenate.gov; amy.grady@wvsenate.gov; bill.hamilton@wvsenate.gov; mark.hunt@wvsenate.gov; glenn.jeffries@wvsenate.gov; robert.plymale@wvsenate.gov; rollan.roberts@wvsenate.gov; patricia.rucker@wvsenate.gov; eric.tarr@wvsenate.gov; ryan.weld@wvsenate.gov

    ASPIRE Letters of Support


    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 STATE‘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.

    Past Bills

    SB 45

    Bill Information:  Senate Bill No. 45 – Coverage for treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome and other autoimmune encephalopathies.

    Introduced BySenator Patricia Rucker,  16th district.

    Bill Status: SB45

    Bill Text: Current Bill Language

    First Reader Summary: A BILL to be entitled an Act to amend Part 1 of Article 1 of Chapter 18 of Title 45 of the Official Code of Georgia Annotated, relating to the state employees’ health insurance plan, so as to provide for a three-year pilot program to provide coverage for the diagnosis and treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) and pediatric acute onset neuropsychiatric syndrome (PANS) under the state health benefit plan; to provide for agreements; to provide for an annual report; to provide for related matters; to provide for automatic repeal; to repeal conflicting laws; and for other purposes.

    Referred to: Senate Health and Human Resources



    HB 2965

    HB 2965: Link

    HB2965: Requiring PEIA, Medicaid and other health insurance providers to cover treatment of pediatric autoimmune neuropsychiatric disorders.


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