Advocating for Californians Impacted by PANS/PANDAS
What Are PANS/PANDAS?
PANS/PANDAS are complex, potentially debilitating conditions marked by the sudden onset of severe neuropsychiatric symptoms, often following an infection. Research suggests that abnormal immune responses and neuroinflammation may contribute to dramatic changes in a child's behavior, neurological functioning, and physical health.​
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Children may suddenly develop debilitating OCD, restrictive eating, severe anxiety, rage, depression, tics, insomnia, and a loss of previously acquired skills. Many also experience significant physical symptoms, including joint pain, muscle weakness, difficulty walking, extreme fatigue, sleep disturbances, and frequent urination. Academic performance and everyday functioning can deteriorate almost overnight.
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The impact on children and families can be devastating. Yet too often, symptoms are misunderstood, dismissed as behavioral problems, or attributed to poor parenting, delaying appropriate evaluation and treatment.
These children need timely access to knowledgeable medical professionals, comprehensive evaluation, and individualized treatment. Families deserve answers, support, and compassionate care, not dismissal.
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We cannot wait. Every child deserves the chance to heal.
Legislation is urgently needed because thousands of children and young adults with PANS/PANDAS face significant barriers to medically necessary treatment, including insurance denials that leave families fighting for care.
Without clear coverage requirements, families endure costly, exhausting battles while delayed diagnosis and treatment can prolong suffering and contribute to lasting health challenges.
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Although PANS/PANDAS affect families worldwide, legislation in every state is essential to expanding access to timely, evidence based care, regardless of ZIP code.
Equally important are state advisory councils that unite medical professionals, caregivers, educators, and advocates to strengthen awareness, improve clinical education, and guide effective implementation.
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This is about more than insurance coverage. It is about protecting children, supporting families, and ensuring access to the medical care they deserve. Every state. Every child.
Why We Need PANS/PANDAS Legislation...
What We Aim To Do...
On September 28, 2024, California became the 12th state to enact PANS/PANDAS health insurance legislation, joining a growing national movement to improve access to medically necessary care.
Today, 17 states have enacted insurance coverage laws: Arkansas, California, Colorado, Connecticut, Delaware, Georgia, Illinois, Indiana, Maryland, Massachusetts, Minnesota, Nebraska, New Hampshire, Oregon, Rhode Island, Tennessee, and Virginia.
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Despite this progress, significant gaps remain. Our mission is twofold: to establish a California Public Health Advisory Committee for PANS/PANDAS and support efforts to secure comprehensive insurance coverage in all 50 states.
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Every State. Every Child. Access to Care.
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Click here to explore PANS/PANDAS insurance legislation by state.
How You Can Help...
Let your State Representative or State Senator know about the urgent need for PANS/PANDAS legislation nationwide.
Click here for templates to call or write your legislators.
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Share your family's story! Help us understand how PANS/PANDAS has impacted your family so we can better represent your needs.Share your story through our contact form.
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Stay informed! Complete our contact form to receive important updates, legislative developments, and advocacy opportunities.
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Teachers and school nurses, WE NEED YOU! Share how PANS/PANDAS has impacted you or your students. Click here to submit your Impact Statement through our contact form.
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Want to make a difference? Click here to discover more ways you can help!
HOW HAS PANS/PANDAS AFFECTED YOUR LIFE?
We asked members of the PANS/PANDAS community, including parents, children, survivors, and grandparents, one simple question: “What do you wish people truly understood about PANS/PANDAS?”
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Their answers reveal the raw, unfiltered reality: The Hard and Honest Truth About PANS/PANDAS.
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We invite you to WATCH, SHARE, and most importantly, LEARN about the challenges these families face every day. Awareness leads to understanding, and understanding inspires change.
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