PANDAS Physicians Network

On behalf of PANDAS Physicians Network (PPN), a division of The Foundation for Brain Science and Immunology, we write in support of NYS Assembly Bill A9659 and NYS Senate Bill S2655A which seeks to require health insurance policies to cover costs for pediatric acute-onset neuropsychiatric syndrome rehabilitation treatment.

PPN is a nonprofit organization that develops and maintains evidence-informed diagnostic and therapeutic guidelines for Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). We provide continuing medical education, and support research to advance accurate diagnosis and effective treatment of these immune-mediated, neuroinflammatory brain disorders.

PANS and PANDAS are characterized by the acute onset of neuropsychiatric symptoms following infection and are associated with immune dysregulation and neuroinflammation. Key symptoms include Obsessive Compulsive Disorder, Avoidant Restrictive Food Intake Disorder, motor and sensory abnormalities, anxiety, irritability, and depression. Moderate to severe cases may render children unable to leave their homes, result in psychiatric hospitalization, self-harm, or cause profound functional impairment. Delays in diagnosis and access to appropriate treatment prolong suffering and negatively impact long-term developmental outcomes.

These medical conditions are treatable. Ensuring access to a severity-based, multi-pronged treatment approach can shorten flares, reduce downstream healthcare utilization, and change the course of a child’s life. Treatment should be determined by the patient’s healthcare provider and may include antibiotics, anti-inflammatories, symptom management, and immunomodulatory therapies. Moderate and severe cases may require intravenous immunoglobulin (IVIG) or plasmapheresis.

Despite published clinical guidelines, many families encounter barriers to insurance coverage for recommended therapies. This results in delayed care, increased emergency department visits, prolonged disability, and, in some cases, preventable hospitalization. When appropriate treatment is denied, care often becomes fragmented, with children presenting to emergency departments, psychiatric units, and other services not structured to address the underlying immune-mediated condition.

PPN is committed to supporting clinicians with rigorously reviewed guidance and educational resources to promote responsible, evidence-informed care. We urge your support of NYS Assembly Bill A9659 and NYS Senate Bill S2655A to ensure that children diagnosed with PANS and PANDAS have timely access to appropriate, medically necessary care.