Connecticut PANS PANDAS Updates

Connecticut PANS PANDAS legislation

Connecticut PANS PANDAS Action Updates

 


Calls To Action

Currently, there are two proposed PANS PANDAS bills in the Senate. Proposed SB452 to require health insurance for PANS PANDAS and Proposed SB712 to create a PANS PANDAS Awareness day. Our primary focus will be on SB452, but we would like both bills to pass out of their respective committees and ultimately pass the Senate and Assembly to get signed into law. There are many steps between now and then. It is not the first year an insurance bill has been proposed. It is crucial that our PANS PANDAS community unites and participates. Each and every one of you should be preparing a letter of testimony and following the upcoming Calls to Action. It is not hard to write a letter requesting support for this bill. If the respective committees vote their proposed bills out of their committee, you may need to submit your letter again. So, please be aware there may be several Calls to Action. Please read the information below on our next steps and about each bill. 

Please follow this page and ASPIRE’s social media for updates – Facebook and Instagram. We will also have more details in the local CT Facebook Group. Please email us ASPIRE for the link or other questions.


Updated News:

Gabriella True, ASPIRE President, and Jim Carson met with Senator Kissel and his Aide, Kate, last week to discuss PANS and PANDAS and these two current proposed bills.

We just got word from his office that we will have a hearing for the proposed Senate Bill 452! The hearing will be on Tuesday, February 14th, starting at 9 AM. Assume you will have to be at the LOB earlier than that to sign up for a spot to provide testimony. We will send more details on signing up when we have them. The due date for written testimony will be earlier than February 14th, so please stay tuned.

Current Call to Action 1- Prep your written testimony
Prepare your written and or oral testimony as soon as possible. Remember, verbal and written are technically meant to be different, so don’t read your written testimony. Oral testimony is normally less than three minutes, but be prepared for only two minutes. Yes, you can email Gabriella if you want her to look yours over. Do not DM her on FB.

There will be a single email to submit it. You will not send it to individual members of the Insurance committee. You can send it separately to your own senator and representative with a short note, something along the lines of – I recently submitted the attached testimony in support of Bill#. As your constituent, I hope you will support this legislation. (And then maybe two sentences on why.)

Current Call to Action 2 – Ask others to write a testimony
Invite other people in your life to also submit testimony. ASPIRE will email most of the doctors in the state. There are some of you that I have requested that you call or email for ASPIRE as I don’t have a couple of emails; if we have discussed this already, you know who you are, and I will be in touch. You, of course, can ask your doctors to as well.

Written & Oral Testimony: Please follow the general guidelines below for written and oral testimony.

  • Address your letter correctly – ex: Dear Senator X or Dear Representative 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.
  • When preparing oral testimony, remember it must be shorter than 2 or 3 minutes. We will clarify the time limit if a hearing date is set.
  • Written and oral testimonies are meant to be different but complement each other.
  • 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.)
    • Do not discuss personal issues that do not pertain to this bill

Proposed S.B. No. 452

Bill Information: Senate Bill No. 452 – AN ACT REQUIRING HEALTH INSURANCE COVERAGE FOR PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDERS ASSOCIATED WITH STREPTOCOCCAL INFECTIONS AND PEDIATRIC ACUTE-ONSET NEUROPSYCHIATRIC SYNDROME.

Introduced By: Sen. John A. Kissel, 7th Dist.

Referred to: Insurance and Real Estate Committee (see full committee list below)

Proposed Bill: Read Proposed Bill SB 452

That title 38a of the general statutes be amended to require health insurance coverage for the diagnosis and treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acuteonset neuropsychiatric syndrome.

Statement of Purpose: To require health insurance coverage for the diagnosis and treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acuteonset neuropsychiatric syndrome.”

Look up Bills Status: SB 452 – CGA.CT.GOV

Insurance and Real Estate Committee Members:

 


Proposed S.B. No. 712

Bill Information: Senate Bill No. 712 – AN ACT DESIGNATING PANS AND PANDAS AWARENESS DAY.

Introduced By: Sen. John A. Kissel, 7th Dist.

Referred to: Joint Committee on Government Administration and Elections (see full committee list below)

Proposed Bill: Read Proposed Bill SB 712

“That section 10-29a of the general statutes be amended to designate October ninth of each year as PANS and PANDAS awareness day to raise awareness of pediatric acute-onset neuropsychiatric syndrome and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.

Statement of Purpose:
To designate October ninth of each year as PANS and PANDAS
awareness day.”

Look up Bills Status: SB 712 – CGA.CT.GOV

Joint Committee on Government Administration and Elections Members:

S29 Co-Chair Flexer, Mae http://www.senatedems.ct.gov/Flexer D
147 Co-Chair Blumenthal, Matt http://www.housedems.ct.gov/blumenthal D
S05 Vice Chair Slap, Derek http://www.senatedems.ct.gov/slap D
028 Vice Chair Morrin Bello, Amy http://www.housedems.ct.gov/morrinbello D
S16 Ranking Member Sampson, Rob http://www.ctsenaterepublicans.com/home-sampson R
080 Ranking Member Mastrofrancesco, Gale L. http://www.cthousegop.com/mastrofrancesco/ R
111 Member Berger-Girvalo, Aimee http://www.housedems.ct.gov/Berger-Girvalo D
070 Member Bronko, Seth http://www.cthousegop.com/Bronko/ R
032 Member Carpino, Christie M. http://www.cthousegop.com/Carpino/ R
054 Member Haddad, Gregory http://www.housedems.ct.gov/haddad D
078 Member Hoxha, Joe http://www.cthousegop.com/hoxha/ R
149 Member Khanna, Rachel https://www.housedems.ct.gov/khanna D
131 Member Labriola, David K. http://www.cthousegop.com/Labriola/ R
S20 Member Marx, Martha mailto:Martha.Marx@cga.ct.gov D
133 Member McCarthy Vahey, Cristin http://www.housedems.ct.gov/McCarthyVahey D
S02 Member McCrory, Douglas http://www.senatedems.ct.gov/McCrory D
101 Member Parker, John-Michael http://www.housedems.ct.gov/Parker D
128 Member Rosario, Christopher http://www.housedems.ct.gov/Rosario D
084 Member Santiago, Hilda E. http://www.housedems.ct.gov/SantiagoH D

 


Past Bills and Reports

 
Reports
Bills

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