Connecticut Legislative Action is lead by one of ASPIRE’s
Please contact her directly to become involved in legislative advocacy in Connecticut.
Don’t forget to register for the next ASPIRE Connecticut ChitChat support group! We will have more as we progress with the legislative year. Topics are not limited to legislative updates as this is a support group for parents led by parents.
Please see below for Bill Information and Call to Action items.
Fill in the Connecticut Contact Form
Share your contact information to receive updates specific to PANS/PANDAS legislative updates in Nebraska. Rest assured, your information will not be sold or shared, and you will not be added to ASPIRE’s general mailing list. This is strictly for Nebraska-based updates.
Fill in the contact form today: Connecticut Form
Sign Up for the ASPIRE Newsletter: Newsletter Form
General Legislative Information
- How Get Started: How to talk to your state representative
- Look Up Your State Representative & State Senator in your district
- ASPIRE Legislative Action Toolkit: Information for Legislators Toolkit
- Legislative Talking Tips
- Legislative Writing Points & Examples: Testimony & Short Form Emails
Current Legislative Efforts
Bill Status: Coming Soon
Bill Language: Coming Soon
Current Bill Summary: Coming Soon
Sponsor: Coming Soon
Co-Sponsors: Coming Soon
Committee: Insurance & Real Estate Committee
Current Call to Action Items
Progress is being made in Nebraska but real change happens when legislators hear directly from the families they represent. We will be sharing upcoming Calls to Action to help educate Nebraska senators about PANS/PANDAS and why insurance coverage matters. You don’t need to be an expert in policy or medicine. Legislators speak with constituents every day, and they expect to hear from families about issues affecting their health and access to care.
Your lived experience is powerful. Sharing your story helps lawmakers understand what PANS/PANDAS looks like in real life—and why action is needed. We’ll guide you every step of the way, and participation is always at your comfort level.
CTA 1 – Connecticut Contact Form
Fill out the Connecticut Contact form. While we will announce CTAs on social media, we must be able to reach people more quickly and consistently!
CTA 2 – Contact & Meet With Your State Senator
We need your help educating your state senator about PANS/PANDAS and asking them to co-sign the drafted bill.
Please contact your senator’s office to request an in-person or virtual meeting. Grace has already met with nearly the entire Banking, Commerce, and Insurance Committee, helping lay important groundwork for these conversations. If your senator is a member of the committee, please contact Grace prior to meeting with them!
To make this easier, Grace has provided an Example Letter to Request a Meeting along with meeting and follow up tips that you can use or adapt. If you know other PANS/PANDAS families in your district, meeting as a small group can be helpful but it’s completely okay to meet individually if that’s what works best for you.
Tell Your Story: Describe how delayed treatment or the inability to treat has affected the patient’s daily life, including symptoms and functioning. Include information on how lack of insurance ultimately affects the patient and the entire family. Stay focused. Be concise. Only discuss matters relevant to this bill.
- Writing/Talking Points – Provides more information on how to frame your impact statement
- Overall Impact Statement – Provide an overall impact statement on the patient’s and family’s emotional, physical, and financial health. Assume this may be all the legislators read. This should be a short paragraph summarizing how the lack of insurance for PANS/PANDAS has impacted the patient’s and the family’s lives. It can be used as a stand-alone statement or as an introductory paragraph to a longer testimony letter.
- Impact of Not Accessing Appropriate Treatment
- Financial Impact
- School Impact:
- Family Impact
- Lack of Insurance Coverage Impact
- Impact of Not Accessing Appropriate Treatment
- Overall Impact Statement – Provide an overall impact statement on the patient’s and family’s emotional, physical, and financial health. Assume this may be all the legislators read. This should be a short paragraph summarizing how the lack of insurance for PANS/PANDAS has impacted the patient’s and the family’s lives. It can be used as a stand-alone statement or as an introductory paragraph to a longer testimony letter.
Past Connecticut Legislative Action
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.
- How to talk to your state representative
- Find your State Representative and State Senator in your district
**UPDATE – SB976**
There has been a significant change to the insurance bill. Unfortunately, proposed SB452 is not going to move forward. However, there is a chance that Senator John Kissel, who proposed the old bill SB452, can get similar bill language included in a large insurance bill, SB 976: AN ACT CONCERNING HEALTH COVERAGE MANDATES FOR CERTAIN HEALTH CONDITIONS. Currently, the PANS PANDAS language is not in SB976.
Below is the proposed language for SB976.
On February 14 at 12:30, there is a hearing for SB976, which is the same day we had hoped would be a hearing for SB452. Normally, because there is no PANS PANDAS language in the bill, we would not be able to provide testimony (written, in-person, or via video) on why PANS PANDAS should be covered by insurance. However, the Insurance and Real Estate Committee chairs have given us the opportunity to do so anyway. We aim to use Tuesday’s hearing as a platform to generate interest in our proposal for inclusion going forward.
Call To Action
So the next steps going forward are really not that different than earlier this week – submit written testimony and provide oral testimony (in-person or via video) if available. In your testimony, please reference the proposed bill language (see above) along with the guidelines of do’s and don’ts written up previously (see below).
Public Hearing for SB976: The Insurance and Real Estate Committee will hold a public hearing on Tuesday, February 14, 2023, at 12:30 P.M. in Room 2E of the LOB and via Zoom. The committee meeting can be viewed via YouTube Live. In addition, the public hearing may be recorded and broadcast live on CT-N.com.
To submit written testimony: You must use the Online Testimony Submission form. Do not email the committee members with your testimony.
- Written testimony is due by Monday, February 13, 2023, at 3:00 P.M.
To register to testify via Zoom or In Person: You must use the On-Line testimony Registration form.
- Registration to testify in person or via zoom will close on Monday, February 13, 2023, at 3:00 P.M.
- The registration form must contain the name of the person who will be testifying.
- You must provide a unique email address for each person registered to speak.
- Speaker order of approved registrants will be listed in a randomized order and posted on the Insurance and Real Estate Committee website on Monday, February 13, 2023, at 6:00 P.M. under Public Hearing Testimony.
To register to testify via telephone: Call the Phone Registrant Line at 860-240-0510 to leave your contact information.
About providing oral testimony:
- The first hour of the hearing is reserved for Legislators, Constitutional Officers, State Agency Heads, and Chief Elected Municipal Officials.
- Speakers will be limited to three minutes of testimony.
- The Committee encourages witnesses to submit a written statement and to condense oral testimony to a summary of that statement.
- All public hearing testimony, written and spoken, is public information. As such, it will be made available on the CGA website and indexed by internet search engines.
We are fortunate to be given this opportunity to submit testimony on a bill that doesn’t have language pertaining to PANS PANDAS. Please note that at some point during the hearing, it is possible that they will not accept more oral testimony. I have been told that should not happen, but I do want to try and manage expectations. The instructions to provide testimony do say, “The Committee requests that testimony be limited to matters related to the items on the Agenda.”
About providing written testimony:
Written & Oral Testimony: Please follow the general guidelines below for written and oral testimony.
- NOTE- For SB976 – Please reference the proposed PANS PANDAS language (see above)
- 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.
- 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.
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. I have requested that some of you call or email a few doctors 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.
Call to Action 3
Send a copy of your written testimony to your State Senator and State Representative (look up here). You can explain in the cover letter that SB452 is no longer going forward; however, the Insurance and Real Estate committee says there is a possibility that language regarding insurance coverage for PANS and PANDAS will be included in SB976. If you plan on providing oral testimony, you can also let them know that. You can even ask that they join you. They may not be available to join you, but if they are, they may sit with you while you provide testimony.
Proposed S.B. No. 976
Bill Information: Senate Bill No. 976 – AN ACT CONCERNING HEALTH COVERAGE MANDATES FOR CERTAIN HEALTH CONDITIONS.
Referred to: Insurance and Real Estate Committee
Bill: Read Bill SB 976
“To require certain health insurance coverage for individual and group health insurance policies in this state.”
Look up Bills Status: SB 976 – CGA.CT.GOV
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.”
Joint Committee on Government Administration and Elections Members:
Past Bills and Reports
Reports
- Office of Legislative Research Report – June 24, 2022
- Office of Legislative Research Report – December 11, 2019
Bills
- S.B. No. 452 – Session 2023
- H.B. No. 5144 – Session Year 2020
- S.B. No. 37 – Session Year 2016
- S.B. No. 15 – Session Year 2015
- S.B. No. 956 – Session Year 2013
- S.B. No. 1070 – Public Act No. 13-187 – Session Year 2013 (Advisory Council)
2023 Insurance and Real Estate Committee Members
| 029 | Co-Chair | Wood, Kerry S. | http://www.housedems.ct.gov/wood | D |
| S17 | Co-Chair | Cabrera, Jorge | http://www.senatedems.ct.gov/cabrera | D |
| 031 | Vice Chair | Barry, Jill | http://www.housedems.ct.gov/barry | D |
| S03 | Vice Chair | Anwar, Saud | http://www.senatedems.ct.gov/anwar | D |
| 077 | Ranking Member | Pavalock-D Amato, Cara Christine | http://www.cthousegop.com/Pavalock/ | R |
| S28 | Ranking Member | Hwang, Tony | http://www.ctsenaterepublicans.com/home-Hwang | R |
| S09 | Member | Lesser, Matthew L. | http://www.senatedems.ct.gov/lesser | D |
| S20 | Member | Marx, Martha | mailto:Martha.Marx@cga.ct.gov | D |
| 042 | Member | Denning, Keith | http://www.housedems.ct.gov/Denning | D |
| 014 | Member | Delnicki, Tom | http://www.cthousegop.com/Delnicki/ | R |
| 150 | Member | Meskers, Stephen R | http://www.housedems.ct.gov/meskers | D |
| 053 | Member | Nuccio, Tammy | https://www.cthousegop.com/Nuccio | R |
Return to ASPIRE Legislative Resources
Gabriella True
