Connecticut PANS PANDAS Action Updates
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 |
Gabriella True
