Missouri PANS PANDAS Updates
Currently, there is a proposed PANS PANDAS bill in the House – Proposed HB 1365 Requires health insurance coverage of certain pediatric disorders that would mandate that MO HealthNet provide coverage for PANS PANDAS.
Please follow this page and ASPIRE’s social media for updates – Facebook and Instagram. Please email Janice Weddle, PhD, with questions regarding Missouri 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
Thank you
Grateful to Rep. Bennie Cook for his support of HB 1365! Last week during the public forum, The Healthcare Reform Committee was an attentive audience and asked many great questions. Thank you to all those who provided testimony in person at the MO State Capitol and submitted written testimony online.
If you have questions, please contact Janice Weddle, PhD directly.
Talking Point Tips
Written & Oral Testimony: Please follow the general guidelines for talking with your legislator and providing written or oral testimony.
- Address your letter correctly: Dear members of the Healthcare Reform Committee
- 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
ASPIRE Board and Professional Advisory Board Testimony Letters:
HB 1365
Sponosred By: Cook, Bennie (143)
Bill Status: HB 1365
Bill Information: HB 1365:
Healthcare Reform Committee: Link to Members
Subject to appropriations and the limitations of section 376.1227 and as permitted by federal law, services for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute onset neuropsychiatric syndrome, including the use of intravenous immunoglobulin therapy, if pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute onset neuropsychiatric syndrome are coded for billing and diagnosis purposes in accordance with section 376.1227;