Connecticut PANS PANDAS Updates

Connecticut Legislative Hearing – Written Testimony & Co-Sponsor Outreach Needed

Public Hearing: Tuesday, March 3 at 9:00 AM

A Connecticut bill HB5374 – AN ACT CONCERNING HEALTH COVERAGE MANDATES FOR CERTAIN HEALTH CONDITIONS on insurance coverage for PANS and PANDAS will be heard Tuesday, March 3, at 9:00 AM. Ask for co-sponsors, write testimony, and encourage your friends and neighbors to submit short written testimony.

We must generate hundreds of written testimonies and secure more co-sponsors this week. In the past, we submitted up to 40 testimonies, which is not enough. Everyone must submit, and all your friends/family must too. Volume matters. Legislators count submissions.

We must have co-sponsors. Please call and email your Connecticut State Senator and Representative this week to ask them to co-sponsor and support this bill. You do not need legislative experience to contact them. Find your legislators here: https://aspire.care/blog/find-your-state-legislator/

More details about testimony, including long letters, short messages, and asking for co-sponsors, are below. Please read and follow.

What Your Testimony Must Make Clear

Legislators must understand that the cost of inaction is measurable, ongoing, and preventable. Access to medically necessary care should not depend on financial means, employer-sponsored coverage, or insurer discretion. This is both a moral and financial issue.

Your testimony should clearly explain why mandated insurance coverage is necessary and focus on the following:

1. The Cost of Inaction

Make clear that delayed or denied care shifts financial and human costs to families, schools, and public systems. Explain:

• Out-of-pocket medical costs – Job loss or reduced employment – Depleted savings or retirement accounts – Housing instability
• IEPs, special education services, homebound instruction
• Emergency room visits or hospitalizations – Crisis intervention involvement – Suicide attempts or severe psychiatric deterioration
• Long-term disability risks

2. The Inequity of Insurance-Based Access

Access to medically necessary care should not depend on financial means, employer-sponsored coverage, or insurer discretion. Access to appropriate care must be consistent and equitable.

Explain:

• If you were unable to obtain IVIG or other recommended treatment because you could not afford to pay out of pocket
• If you paid out of pocket, what were the financial consequences?
• If you obtained coverage under a comorbid diagnosis, and how that caused:
  • Delays in finding appropriate providers – Paying new physicians out of pocket – Repeated denials – Lengthy appeals – Lost critical treatment time

Call & Email Your Legislators This Week

Do both. Call and email.

Ask them directly to co-sponsor and support this bill. Tell them you need equitable insurance coverage. This outreach helps refine your written testimony.

If you need guidance on contacting legislators, see the advocacy resource listed below.

Submit Testimony & Flood the Portal

TESTIMONY  – including longer letters and short messages

Submit your testimony here: https://www.cga.ct.gov/aspx/CGATestimonySub/CGAtestimonysubmission.aspx?comm_code=ins

If you have any difficulty with the submission portal, specifically with a disclaimer pop up, please email mackenzie.frenette@cga.ct.gov.

HB5374 – AN ACT CONCERNING HEALTH COVERAGE MANDATES FOR CERTAIN HEALTH CONDITIONS

Text, email, and send this link to friends, family, coworkers, teachers, and providers. Give them the link and sample language so they can quickly submit supportive testimony. All of this matters.

Short Form Example 1

Please vote YES on HB5374 – AN ACT CONCERNING HEALTH COVERAGE MANDATES FOR CERTAIN HEALTH CONDITIONS. I have witnessed firsthand, with my PANS/PANDAS students, the difference that treatment makes. Students who receive appropriate treatment remain in mainstream education and may require minimal accommodations. Without treatment, students often require long-term, costly special education services.

Short Form Example 2

Please vote YES on HB5374 – AN ACT CONCERNING HEALTH COVERAGE MANDATES FOR CERTAIN HEALTH CONDITIONS to alleviate the immense suffering faced by families dealing with PANS/PANDAS. Without insurance coverage, the financial hardship on families and the state is unsustainable.

Additional Background & Resources

• Overview: Why Insurance Coverage Is Necessary
  • https://aspire.care/featured/mandated-insurance-coverage-for-pans-and-pandas/
• The Cost of Inaction and the Need for Insurance
  • https://aspire.care/blog/insurance-coverage-gaps-and-the-case-for-mandates-in-pans-and-pandas/
• Legislative Talking and Writing Points
  • https://aspire.care/blog/legislative-talking-writing-points/
• Aetna’s PANS and PANDAS Coverage Policy and the Case for State Mandates
  • https://aspire.care/blog/aetnas-pans-and-pandas-coverage-policy-and-the-case-for-state-mandates/
• Understanding Rhode Island’s Insurance Cost Analysis
  • https://aspire.care/blog/understanding-rhode-islands-pans-pandas-insurance-report/
• A Chat About Legislative Advocacy: Your Story Matters
  • https://aspire.care/featured/a-chat-about-legislative-advocacy-your-story-matters/

This is a critical week.

Submit. Call. Email. Share.

Do not let up.

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

Additional Past Bills and Reports