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Massachusetts Legislative News

New Hampshire PANS/PANDAS Legislative News


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CALL TO ACTION
HB1751
:
An act relative to insurance coverage for pediatric autoimmune neuropsychiatric disorders
House Commerce and Consumer Affairs Committee
.


  • Testimony is due by January 16th, 2018
  • Contacting legislators is NOT HARD but it is necessary.
  • Please follow the steps and the key talking/writing points.

For the most up-to-date information, please visit: New Hampshire PANS PANDAS Advocacy Team Page which is run by local New Hampshire advocates.
NEPANS will try and update the website and the NEPANS Facebook page as quickly as possible too.

Please Write Testimony.
Testimony can also be given in person on January 16th at 2:00. Please contact the administrators of New Hampshire PANS PANDAS Advocacy Team Page further information providing testimony in person.

For more information on HB1751: An act relative to insurance coverage for Pediatric Autoimmune Neuropsychiatric Disorders - Click Here

Who Should You Send Your Testimony to?
The members of the House Commerce and Consumer Affairs Committee - Please follow link for email addresses.
You can also email the sponsors of the bill.  The sponsors are listed here.

What Should You Say:
It is important to know the correct talking points in order to stay united and focused.
 
We are hoping for a consistent message from all parties. Please do not characterize this illness as an epidemic when talking with legislators. Doing so compromises our message and minimizes our chances of obtaining legislative support. Instead, talk about how this illness has impacted your family (the constituents) and how insurance companies are externalizing costs to families and the state in terms of social services, education, and other costs associated with children who do not receive necessary treatment. Epidemics are expensive, and it is difficult to justify funding costly mandates in the legislature.
 
Of course edit to fit your needs. If you are a professional working with children with PANS/PANDAS you will have your own distinct set of reasons why insurance legislation should be passed.



Dear Senator or Representative (Fill in Name),
I am writing to obtain your support for the favorable reporting of HB1751: An act relative to insurance coverage for Pediatric Autoimmune Neuropsychiatric Disorders out of the House Commerce and Consumer Affairs Committee. This bill provides support for families struggling with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS).

The hallmark trait of PANS is a sudden, acute, and debilitating onset of Obsessive Compulsive issues and/or eating disorder along with at least of 2 other Neuropsychiatric symptoms. Parents of these children describe their child as going to bed typical and waking up unrecognizable.  The severity of symptoms varies from child to child.  Severity can increase as a child is not treated quickly and appropriately. Often a simple course of antibiotics or steroids are able to bring these kids back to their baseline. In more extreme cases immune modulating therapies are the key to healing.

Unfortunately, many of these children do not get the help they need either because they do not receive an early diagnosis by a doctor or because insurance companies choose short term profits over doctor recommended therapies. The protracted denial and appeal process of insurance coverage delays treatment for these children and puts them at risk of further decline and potential long-term disability. These burdens are inevitably shouldered by the family and the state in terms of costs associated with social services, medical treatments, and education while insurers pad their bottom line.

It is our hope that you will commit to support these brave children and their families’ by voting yes on HB1751: An act relative to insurance coverage for Pediatric Autoimmune Neuropsychiatric Disorders

INSERT: A short and concise recap of how PANS has affected your family or your patients or students and why you support insurance coverage.

If you would like further information regarding PANDAS/PANS you may visit the National Institute of Mental Health (NIMH) webpage at https://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml

With Gratitude,

Fill in your Name
Fill in your address

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  • About Us
    • Mission & History
    • Our Board
    • NEPANS Newsletter
    • Contact Us
  • PANS/PANDAS Info
    • Before/After PANS - Examples
    • PANS/PANDAS Symptom Severity
    • OCD
    • PANS/PANDAS Rating Scales/Tracking Tools
  • Resources
    • PANS Information pdfs
    • Awareness Posters
    • PANS Family Stories
    • Websites/Studies/News >
      • JCAP-Treatment Guidelines & Consensus Paper
      • Research, Studies, Journals
      • Web Articles & Fact Sheets
      • In the News
    • School Resources >
      • Symptoms & Supports
      • Before/After PANS Examples
      • Nurses & Health Care Plans
      • Absences & Homebound
    • Video Library
  • Events
    • Upcoming Events >
      • Outreach Events - Presentation, Tables, Information
    • Past Events >
      • Reaching Recovery Evening
      • NEPANS Integrative Medicine Conference
      • CEC Convention
      • My Kid Is Not Crazy
      • Lecture Series
      • Family Events
      • Family Picnic w PANS Life
      • CT Conf-2014
      • NH Conf-2014
      • Dr's Breakfast-14
      • Parent's Q&A-14
      • RI Conference-2013
      • NEPANS Supported Events
    • Speaker Bios
    • Support Groups
  • Get Involved
    • PANS PANDAS Awareness Day >
      • 2019 Awareness Day
      • 2017 Awareness Day
      • 2016 Awareness Day
      • 2015 Awareness Day
      • 2014 Awareness Day
      • 2013 Awareness Day
    • Spread Awareness
    • Legislative News >
      • CT Legislative News
      • MA Legislative News
      • NH Legislative News
  • NEPANS Blog