West 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.
- How to talk to your state representative
- Find your State Representative and State Senator in your district
Call To Action
First Call to Action – Asking for support and a hearing
- 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.
- For the Insurance bill SB45:
- Say/Email Example
- 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.
- Say/Email Example
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
- Do discuss matters relevant to this bill. For example: how not having mandated insurance coverage increased suffering by delaying or preventing treatment
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 By: Senator 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
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Senator Micheal J. Maroney – Chair (R – Marshall, 02) |
(304) 357-7902 |
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Senator Tom Takubo – Vice Chair (R-Kanawha, 17) |
(304) 357-7990 |
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Senator Michael T. Azinger (R – Wood, 03) |
(304) 357-7970 |
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Senator Laura Wakim Chapman (R – Ohio, 01) |
(304) 357-7918 |
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Senator Vince Deeds (R – Greenbrier, 10) |
(304) 357-7959 |
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Senator Amy N. Grady (R – Mason, 04) |
(304) 357-7855 |
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Senator Bill Hamilton (R – Upshur, 11) |
(304) 357-7906 |
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Senator Mark Hunt (R – Kanawha, 08) |
(304) 357-7841 |
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Senator Glenn D. Jeffries (R – Putnam, 08) |
(304) 357-7866 |
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Senator Robert H. Plymale (D – Wayne, 05) |
(304) 357-7937 |
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Senator Rollan A. Roberts (R – Raleigh, 09) |
(304) 357-7831 |
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Senator Patricia Puertas Rucker (R – Jefferson, 16) |
(304) 357-7957 |
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Senator Eric J. Tarr (R – Putnam, 04) |
(304) 357-7901 |
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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.
- HB2965 – Aspire Professional Advisory Board Letter
- HB2965 – ASPIRE Board of Directors Support Letter
- HB2252 – Aspire Professional Advisory Board Letter
- HB2252 – ASPIRE Board of Directors Support Letter
Gabriella True
