NAMI New York State is the state affiliate of the National Alliance on Mental Illness, the largest grassroots mental health organization in the country.
What this letter argues
- Children with moderate to severe cases may become unable to attend school, leave their homes, or safely function in daily life.
- Evidence-informed clinical guidelines and effective treatments exist, including IVIG, but inconsistent or denied coverage blocks access.
- Denials push families toward emergency departments and inpatient services that are not designed to treat the underlying cause.
- Coverage is cost-effective, because early intervention reduces the need for more intensive services later.
The letter in full
Submitted by James Norton, Government & Community Affairs Manager. Published exactly as submitted.
NAMI New York State strongly supports passage of Assembly Bill A9659 & Senate Bill S2655A, sponsored by Assemblymember Cashman and Senator Stec, which would require health insurance plans in New York State to cover medically necessary rehabilitative treatment for pediatric acute-onset neuropsychiatric syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), when certified by an attending physician. This legislation is a critical step toward ensuring that children affected by these serious conditions receive timely, appropriate, and comprehensive care.
PANS and PANDAS is characterized by the sudden onset of severe neuropsychiatric symptoms such as obsessive-compulsive behaviors, anxiety, depression, and significant functional impairment. In moderate to severe cases, children may become unable to attend school, leave their homes, or safely function in daily life. Without timely and effective treatment, these conditions can lead to long-term developmental consequences, psychiatric hospitalization, and increased risk of self-harm.
Despite the existence of evidence-informed clinical guidelines and effective treatment options, including Intravenous Immunoglobulin (IVIG), many families face significant barriers to accessing care due to inconsistent or denied insurance coverage. These barriers often result in delayed treatment, worsening symptoms, and increased reliance on emergency departments and inpatient services that are not designed to address the underlying medical causes of PANS and PANDAS.
Ensuring coverage for medically necessary treatment is not only compassionate but cost-effective. Evidence shows early and appropriate intervention can reduce the need for more intensive and costly services later, while significantly improving outcomes for affected children and their families.
I respectfully urge you to support and advance A9659/S2655A to ensure that all children in New York have access to the care they need to recover and thrive.
The bills this letter supports
This letter supports A9659 and S2655A, the previous Senate companion bill, which was replaced by S10208 in May 2026. The current bills are A9659A, sponsored by Assemblymember Michael Cashman and now in the Assembly Insurance Committee, and S10208, sponsored by Senator Pete Harckham and now in the Senate Insurance Committee.
Send a letter to your own legislators or read more about the bills.