PANS and PANDAS are serious, immune-mediated conditions for which timely, appropriate medical treatment can significantly alter outcomes. Yet across the United States, many patients continue to face delayed or denied access to physician-prescribed care due to gaps in insurance coverage. These barriers contribute to prolonged illness, avoidable disability, educational disruption, and escalating costs borne by families, schools, and public systems. Legislative action is essential to establish consistent, equitable standards for coverage and to prevent avoidable harm.

State-level insurance mandates play a critical role in ensuring access to medically necessary care. By establishing clear coverage standards, mandates reduce reliance on crisis-driven interventions, help prevent long-term disability, and ensure that access to care is based on medical need rather than geography, employment status, or financial means.

Effective advocacy does not require prior policy experience. Many successful legislative efforts have been led by parents, patients, and community members who learned how to engage with policymakers and share the real-world impact of delayed or denied care. Clear, informed communication with legislators is a key driver of progress.

Resources are available to help you get started. Our guide, How to Assist with PANS/PANDAS Legislation, provides practical information on engaging with legislators, understanding state-level efforts, and advocating effectively for coverage. Additional state-specific pages and legislative resources are available below. For questions about advocacy efforts in your state or to get involved, please contact ASPIRE’s Public Policy Committee.

How to Get Involved  Find Your State Legislator

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PANS Legislation: What It Is and How ASPIRE Supports States

Families affected by PANS and PANDAS often face delayed diagnosis, inconsistent care, and barriers to insurance coverage and school support. State-level PANS legislation aims to address these gaps by improving recognition, access to medically necessary treatment, and coordination of care.

ASPIRE supports state-based efforts by providing education, research context, and practical infrastructure to families, clinicians, and community advocates. We translate complex medical and policy information, share lessons learned across states, and connect stakeholders with accurate, evidence-informed resources.

To support state leads, ASPIRE creates state-specific pages, coordinates early informational meetings to help communities get oriented to the legislative process, develops materials such as one-pagers, toolkits, and explainers, and provides contact pathways so leads can stay connected with families, patients, and supporters in their state.

ASPIRE is not a lobbying organization. We do not draft, promote, or advocate for specific legislation. All legislative initiatives are state-led and shaped by local needs and priorities.

Our role is to support informed, patient-centered conversations so states can pursue policy solutions that improve care while minimizing unintended harm.

Legislative Resources & State Legislative Update Pages