Connecticut PANS PANDAS Updates

Co-Sponsor Outreach Needed

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

Please continue to contact your legislators to ask them to co-sponsor the bill. It passed almost out of the insurance committee and the appropriations committee. 

We must have more 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 Key Points 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

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/

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