Tennessee PANS PANDAS Updates

 

 

Kristi Giacco is leading the efforts in Tennessee. We will help provide updates and Call to Action items regularly. If you would like to join in the efforts, please contact Kristi directly.

Update

The two insurance bills will not move forward during this session, but tremendous progress has been made! We look forward to continuing to help support efforts in Tennessee. Please stay tuned for information about the status of the Awareness Day Bill. Please make sure to stay in touch and follow this page for updates regarding continued efforts to pass insurance mandates.

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In the News

• ‘He’s falling apart’ – Family enters final fight for son’s ‘life-saving’ treatment: See Story
• PANDAS Family granted insurance coverage after 4th attempt: See Story
• ‘My brain is making me do this’: Family fights for insurance coverage of brain disease caused by strep: See Story
  • Below are brief updates to this story

1st Update:

2nd Update:

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General Legislative Information

• How to talk to your state representative
  • How to Get Started
• Find your State Representative and State Senator in your district
  • Look Up Your Legislator!
• ASPIRE Legislative Action: Information for Legislators Toolkit
  • Download Today!
• Legislative Talking/Writing Points and Examples
  • • Visit Section Today!
      • What to Include in Testimony Letters and Talking Points
      • Impact Statement Examples
      • About PANS/PANDAS Examples
      • Short Form Support Emails

 

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Past Legislative Efforts

 

Insurance Bills:

 

SB2401/HB2484: AN ACT to amend Tennessee Code Annotated, Title 8; Title 56 and Title 71, relative to pediatric medical disorders. 

Insurance, Health, Accident – As introduced, mandates private insurance coverage for treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) and pediatric acute onset neuropsychiatric syndrome (PANS). – Amends TCA Title 8; Title 56 and Title 71.

SB2401/HB2484 Bill Status: See Link

Committee Emails: Click Here

 

SB2402/HB2463: AN ACT to amend Tennessee Code Annotated, Title 8; Title 56 and Title 71, relative to pediatric medical disorders.

TennCare – As introduced, requires TennCare coverage of treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) and pediatric acute onset neuropsychiatric syndrome (PANS). – Amends TCA Title 8; Title 56 and Title 71.

SB2402/HB2463 Bill Status: See Link

Committee Emails: Click Here

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Awareness Day Bill:

 

SB2400/HB2524: AN ACT to amend Tennessee Code Annotated, Title 15, relative to PANDAS Awareness Day.

Holidays and Days of Special Observance – As introduced, establishes October 9 of each year as “PANDAS Awareness Day” to promote awareness of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and Pediatric Acute-onset Neuropsychiatric Syndrome. – Amends TCA Title 15. 

SB2400/HB2524

Bill Status: See Link

Committee Emails: Click Here

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ASPIRE Letters of Support

 

• ASPIRE Board Support for: HB2463-TennCare & HB2484: Private Insurance
• ASPIRE Board Support for: SB2401-Private Insurance & SB2402 -TennCare
• ASPIRE Professional Advisory Support for: HB2463-TennCare & HB2484-Private Insurance
• ASPIRE Professional Advisory Support for: SB2401-Private Insurance & SB2402-TennCare

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Call to Action!

We have several Call to Action items. It is crucial that you start on them today. Please read the step-by-step instructions below.

We need you to contact YOUR district’s legislators AND members of the committees in both the House and the Senate that our three bills are in front of currently. Please note that each bill has TWO bill numbers, one for the Senate SB (SB2401, SB2402, SB2400) and one for the House (HB2484, HB2463, HB2524). They are considered separately by the House and the Senate, which is why we need to contact both. If your district legislators, House or Senate, sit on any of these committees, it is critical that you make an appointment to meet them, but we encourage everyone to meet with their district legislators no matter what. Legislators value constituents over seeing lobbyists and other organizations, which means you will be a top priority. Please make sure you follow the steps below; the timeline is important as it is designed to make the most significant impact on the legislators. Email addresses for all committees, as well as a link to look up your district legislators, can be found below.

1. Feb 15/16 – Email an About PANS/PANDAS Intro to your district legislators AND the Committee Members with the following information. See below for an example of the About PANS/PANDAS Intro email. The email should include:
   1. Ask your legislator for a meeting (in-person, video, phone)next week or the week after at the latest. If your district legislator is on any of these committees, please point that out.
   2. Ask them to support PANS/PANDAS Insurance Bills SB2401/HB2484, SB2402/HB2463, and PANS/PANDA Awareness Day HB2524/SB2400.
   3. Write about what PANS/PANDAS is
   4. See below for Legislator email addresses
2. Feb 15/16 –– Set Up a Meeting with Your Legislators for next week (in-person, video, phone)
   
   1. Call your legislators’ offices in both the Senate and the House to set up a meeting (in-person, video, phone) to talk about why you are asking them to support these bills. Legislators value constituents over seeing lobbyists and other organizations, which means you will be a top priority.  You do not need any legislative experience. Trust us on this. Remember, you know your story better than anyone else, so there is no one more qualified than YOU.
   2. Please set the meetings for the week of February 19th or February 26th at the latest.
   3. See below for the link to find your legislator’s phone numbers
3. Now – Write Your Personal Impact Statements so you can send Monday/Tuesday
   
   1. These emails are where you tell YOUR STORY about how PANS/PANDAS has impacted your child’s and your family’s life. Again, ask for a meeting with your district legislators early in the week or the following week.
   2. Monday/Tuesday – Email these Personal Impact Statements to your district legislators and Committee members of both the House and Senate
   3. See below for Talking/Writing Points
   4. See below for an example of a Personal Impact Statement
   5. See below for Legislator email addresses
4. Now – Enlist Help from Anyone and Everyone! –  See below for examples of Short Form Support Emails
   
   1. Today or Friday, ask everyone you know in Tennessee if they will send their district legislators and committee members a short note requesting support for the 3 Bills. Include Friends, Family, Teachers, Doctors, Therapists, etc.
   2. Early next week, have them email the short emails
   3. See below for Legislator email addresses