PANS PANDAS Advocacy: Talking Points
ASPIRE is working to support national efforts to pass legislation requiring insurance coverage for the treatment of PANS and PANDAS. By sharing your story and keeping the conversation clear, positive, and focused, you can help drive change.
Start with a Thank You
Always thank your legislator or staff member for meeting with you. A little gratitude goes a long way.
Quick Overview of PANS/PANDAS
Begin with a short explanation of PANS/PANDAS. Most lawmakers and staff aren’t familiar with these conditions, so it’s important to give them a basic understanding.
Share Your Story
The most powerful thing you can do is tell your personal story. Talk about how PANS/PANDAS has impacted your child, your family, and your daily life. Mention any struggles you’ve had getting proper care, insurance coverage, the financial toll, missed school and work, and how isolating this journey can be. Your story makes the issue real.
What We’re Asking For
We’re asking New Jersey to join 12 other states in passing a law that requires insurance companies to cover treatment for PANS and PANDAS.
How Legislators Can Help
We need legislators to sponsor a bill that would require insurance coverage for PANS/PANDAS treatment. If they ask for a draft bill, let them know you’ll follow up by email—and please let Gabriella know so we can send them the sample legislation from ASPIRE’s Legislative Working Group.
Things to Keep in Mind
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Stay Positive: Stay upbeat and respectful when making your requests. Criticizing insurers or policymakers isn’t helpful.
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Young Staffers Matter: Don’t be surprised if you’re meeting with a young staffer. They often have more influence than you might think.
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Be Yourself: There’s no right or wrong way to share your story. Speak from the heart—you don’t need to memorize anything.
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Be Concise: Lawmakers have limited time. Stick to the point and avoid going off on tangents.
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Keep It Simple: No need to hand out thick packets of information.
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Follow Up: Make sure to get their business card and send a thank-you email afterward.
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It’s Okay Not to Know Everything: If they ask a question you can’t answer, it’s totally fine to say you’ll follow up by email.
Common Questions
How common are PANS and PANDAS?
There’s no official tracking, so we don’t have an exact number. The often-quoted “1 in 200” figure wasn’t scientifically derived. Many cases are missed or misdiagnosed, so we believe it’s much more common than people realize. Feel free to share that you personally know many families affected.
Which states already have insurance coverage laws?
Twelve states so far: Arkansas, California, Colorado, Delaware, Illinois, Indiana, Maryland, Massachusetts, Minnesota, New Hampshire, Oregon, and Rhode Island.
Gabriella True
