New York PANS PANDAS Updates

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New York PANS PANDAS Action Updates

 


Calls To Action
Are you in New York State? Help secure legislation mandating insurance coverage for PANS PANDAS in New York. Now is the time to support them. Please help and get your friends and family and schoolteachers to act on it. WE NEED EVERYONE’S HELP! You can do this! Save our kids! We’re in this together, and together, we will make the change! No experience is necessary.
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


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: AR, DE, IL, MA, MD, MN, and NH. NY is a little behind.
    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
    • Senators to support #S3038
    • Assemblymen to support #A2823
  • 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

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

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 MembersLink


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)

 

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