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 – Proposed SB45 to require health insurance for PANS PANDAS. It is not the first year an insurance bill has been proposed. It is crucial that our PANS PANDAS community unites and participates. 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.

Call To Action

First Call to Action – Asking for support and a hearing

  1. Call and email the Chair and Vice Chare of the Senate Health and Human Resources Committee. You can also contact the entire committee. The membership list is below. For insurance bill SB45, we would like a hearing so we can submit testimony. If your state representative or state senator is on this committee, it is important to let them know you are their constituent. Even if they are not on that committee, please also call your state representative and state senator and ask them to support this bill.
  2. For the Insurance bill SB45: 
    1. Say/Email Example
      1. My name is X, and I am a (provider, parent, teacher, self-advocate, etc.). I urge the Senator/Representative to support SB45 on behalf of my family and other families in West Virginia. Please have a hearing for this bill so we may provide testimony.

Second Call to Action – Prepare Testimony letters for SB45

We hope a hearing will occur so we can submit oral and/or written testimony. It is too early to know right now. Typically, hearings are scheduled with little lead time, making it important to prepare your testimony in advance. So please draft them within the next few days.

Written & Oral Testimony: Please follow the general guidelines for talking with your legislator and providing written or oral testimony.

  • Address your letter correctly: Dear Senator X or Dear Assemblyman X, or Dear Representative X
  • Include your full name and address
  • Remember, your testimony becomes part of the public record and is accessible via the state website. Please share relevant details that pertain to the bill but do not overshare personal information.
  • Make sure you are asking legislators to support the appropriate bill number and name.
  • Tell your story. Stay focused. Be concise.
    • Do discuss matters relevant to this bill. For example: how not having mandated insurance coverage increased suffering by delaying or preventing treatment
      measurements you took to self-pay for treatments

      • how treatment of any kind, but especially IVIG, helped your child, your patient, your student, yourself, or your household, etc
      • how delayed treatment or the inability to treat affected your child, your patient, your household, etc
      • how delayed treatment or the inability to treat affected your child, your student’s performance at school, the need for a 504 plan or IEP, the need for homebound instruction, absenteeism, etc.
      • how PANS PANDAS symptoms impact your child’s and your daily life
      • how it affected your ability to practice medicine (for providers only)
    • 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

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

Senator Micheal J. Maroney – Chair (R – Marshall, 02)


(304) 357-7902

Senator Tom Takubo – Vice Chair (R-Kanawha, 17)


(304) 357-7990

Senator Michael T. Azinger (R – Wood, 03)  


(304) 357-7970

Senator Laura Wakim Chapman (R – Ohio, 01)  


(304) 357-7918

Senator Vince Deeds (R – Greenbrier, 10)  


(304) 357-7959

Senator Amy N. Grady (R – Mason, 04)  


(304) 357-7855

Senator Bill Hamilton (R – Upshur, 11)  


(304) 357-7906

Senator Mark Hunt (R – Kanawha, 08) 


(304) 357-7841

Senator Glenn D. Jeffries (R – Putnam, 08)  


(304) 357-7866

Senator Robert H. Plymale (D – Wayne, 05)  


(304) 357-7937

Senator Rollan A. Roberts (R – Raleigh, 09)  


(304) 357-7831

Senator Patricia Puertas Rucker (R – Jefferson, 16) 


(304) 357-7957

Senator Eric J. Tarr (R – Putnam, 04) 


(304) 357-7901

Senator Ryan W. Weld (R – Brooke, 01) 


(304) 357-7984

Past Bills

HB 2965: Link

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


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