For Legislative State Leads
PANS Legislation: What It Is and How ASPIRE Supports States
Across the United States, families affected by PANS and PANDAS face a common problem: access to timely, appropriate medical care is inconsistent, fragmented, or denied altogether. Even when clinicians recognize PANS, insurance coverage, school accommodations, and coordinated care are frequently lacking.
State-level PANS legislation exists to address these gaps.
PANS legislation may include:
- Insurance coverage requirements for medically necessary care
- Recognition of PANS/PANDAS as immune-mediated medical conditions
- Access to appropriate evaluation, treatment, and follow-up
- Support for care coordination across medical and educational systems
Each state takes a different approach, and there is no single legislative template. What works in one state may not be suitable or feasible in another.
ASPIRE helps address these challenges.
What ASPIRE Does
ASPIRE supports state-based PANS efforts by providing education, research synthesis, technical guidance, and community infrastructure. We strive to ensure that families, clinicians, and advocates have accurate, current information and practical tools as states consider policy solutions.
We help by:
- Translating complex medical and policy information into accessible language
- Providing background education on PANS/PANDAS for legislators and stakeholders
- Sharing comparative examples of how other states have approached PANS-related policy
- Connecting state advocates with clinicians, researchers, and experienced policy advisors
- Supporting patient- and family-centered storytelling grounded in medical context
Our work supports informed decision-making rather than dictating outcomes.
What ASPIRE Does Not Do
ASPIRE is not a lobbying organization.
We do not:
- Independently initiate, sponsor, or control legislation
- Serve as the named advocate or bill sponsor for state legislation
- Lead or direct state advocacy efforts
- Engage in political campaigning or endorse candidates or parties
ASPIRE does support state-led advocacy efforts. Legislative initiatives are always driven by families, patients, clinicians, and community members based on local needs and priorities. Our role is to support those efforts through education, research context, and technical guidance without replacing or overriding state leadership.
Why This Support Matters
Most legislative leads are not professional advocates or policy experts. They are parents, patients, clinicians, or community members stepping forward because gaps in care have directly affected their lives.
Policy conversations around PANS and PANDAS are often complex. The condition spans medical, mental health, insurance, and education systems, each with its own language and limitations. Without shared understanding, families and advocates often spend significant time clarifying what PANS is, correcting misunderstandings, and navigating systems not designed for this condition.
ASPIRE’s role is to help ease that burden.
By grounding discussions in accurate medical information, lived experience, and practical context, ASPIRE supports clearer communication and more productive dialogue. This enables legislative leads to focus on building relationships and making progress, rather than repeatedly clarifying basic information.
Our goal is to support an informed, steady, and collaborative process for state leads, families, professionals, and policymakers.
A Collaborative, State-Respectful Approach
There is no single “right” way to pursue PANS policy.
Each state’s healthcare system, political environment, and community needs are different. ASPIRE respects that complexity.
Our goal is to achieve durable, informed progress that improves care without creating unintended consequences for patients and families.
Ready to Explore Legislative Work in Your State?
If you are interested in exploring legislative advocacy in your state, the next step is a conversation.
Please email Legislative Support with your availability. Initial conversations typically address:
- The legislative landscape in your state
- Common entry points for PANS-related policy
- Committee structure and process basics
- Community engagement and coalition building
- Talking with legislators and responding to questions
- Calls to action and communications strategy
- Early considerations around bill language
From there, ASPIRE can help identify any additional resources or guidance that may be appropriate.
Note: ASPIRE maintains more detailed legislative guidance in a restricted format. Access is provided selectively to help ensure materials are used thoughtfully and in ways that support patients and families.
Return to ASPIRE Legislative Resources
Gabriella True
