New York PANS PANDAS Action Updates
Calls To Action
Information about the Senate S3038 bill and Assembly A2823 bill is below.
Questions: Contact NY PANS Advocacy Team NYPAT.
For updates and new Calls to Action: Please follow NYPAT, this NY PANS Update page, and ASPIRE’s Facebook and Instagram.
How to Get Started
- How to talk to your state representative
- Find your State Representative and State Senator in your district
Call to Action #1: Say AYE for both bills
Please visit the Senate and Assembly Bill Status links (see below). On each page, there is a small box that says, “do you support this bill?” click “AYE or NAY.” Please click AYE and fill in your personal information. You may include a brief note on why you would like your representative to support this legislation and have a hearing.
Call to Action #2: Asking for support and a hearing
Contact the Senate Insurance Committee members, Assembly Insurance Committee Members, and your District Representatives. Remember, there is a bill for the Senate and the Assembly.
- Ask Senators to support #S3038 and for a hearing to provide testimony – see below for links to committee members
- Ask Assemblymen to support #A2823 and for a hearing to provide testimony- see below for links to committee members
- Explain it’s for insurance for PANS/PANDAS coverage (medication, IVIG if needed)
Other states have laws in place: AK, AR, DE, KS, ID, IL, MA, MD, MN, NH, OR, and RI.
Benefits: Saving lives, saving state and insurance companies money if we treat early and effectively - Briefly share your story/your need.
- Ask again to support the bill.
Written & Oral Testimony: Please follow the general guidelines below for written and oral testimony.
- Address your letter correctly – ex: Dear Senator X or Dear Assemblyman X
- Include your full name and address
- Remember, your testimony becomes part of the public record and is accessible via the ct.gov 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
- 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
Senate Bill S3038
Bill Information: Relates to insurance coverage for pediatric acute-onset neuropsychiatric syndrome
Bill Status: Link
Bill Language: Link
Sponsored By: Daniel G. Stec – (R, C, IP) 45th Senate District
Cosponsored By: Patrick M. Gallivan (R, C) 60th Senate District
Referred to: Senate Insurance Committee (Filter for the Insurance Committee)
Bill Title: An act to amend the insurance law, in relation to requiring certain health insurance policies to cover costs for pediatric acute-onset neuropsychiatric syndrome
Bill Purpose: This bill will require certain health insurance policies to cover costs associated with pediatric acute-onset neuropsychiatric syndrome
Senate Insurance Committee Members – Link
Assembly Bill A2823
Bill Information: Relates to insurance coverage for pediatric acute-onset neuropsychiatric syndrome
Bill Status: Senate Site Link
Bill Language: Link
Sponsored By: Jones
Cosponsored By: Jo Anne Simon, Donna Lupardo, William Magnarelli, William Colton, Kenneth Blankenbush
Referred to: Insurance Committee
Bill Title: An act to amend the insurance law, in relation to requiring certain health insurance policies to cover costs for pediatric acute-onset neuropsychiatric syndrome
Bill Purpose:: This bill will require certain health insurance policies to cover costs associated with pediatric acute-onset neuropsychiatric syndrome
Assembly Insurance Committee Members – Link
Past Bills (partial list)
- Senate Bill S5332 Information: Link
- Assembly Bill A877 Information: Link
- ASPIRE Board of Directors Support #A00877
- ASPIRE Professional Advisory Board Support #A00877