JOINT STATEMENT FROM FOUR NATIONAL PANS/PANDAS NON-PROFITS AND CLAIMABLE, A COMPANY SUPPORTING AFFECTED FAMILIES
Read: Full Joint Letter to AAP
Four leading PANS/PANDAS organizations, ASPIRE, NWPPN, PANDAS Network and the Look. Foundation, together with Claimable, a company providing advocacy and support for families navigating PANS/PANDAS, are raising serious concerns about the American Academy of Pediatrics’ (AAP) 2024 Clinical Report on PANS/PANDAS.
The AAP Report is not a clinical guideline—yet some pediatricians are citing it to block diagnosis and treatment, and by insurers to justify denials of critical therapies, including IVIG.
This misuse is deeply concerning and has real-world consequences.
The report:
- Omits key studies supporting the use of IVIG and steroids
- Conflicts with peer-reviewed clinical guidelines from institutions like Stanford, Columbia, and the NIMH
- Lacks transparency regarding authorship and expert input
- Advises against important diagnostic tools like strep testing
As a result, children are being misdiagnosed, undertreated, or denied care altogether—leading to psychiatric crises, medical complications, and devastating impacts on families.
We respectfully urge the following actions:
- The AAP should retract and revise the report to address its omissions and clarify its intended use
- Pediatricians should rely on the established, peer-reviewed clinical guidelines (JCAP) for diagnosing and treating PANS/PANDAS
- Insurers should stop using the report to deny care and revisit all IVIG denials based on it
This is about more than policy—it’s about protecting children from preventable suffering. We stand united in calling for an evidence-based, compassionate, and transparent approach to care.
#PANS #PANDAS #AAPReport #AccessToCare #ChildHealth #EvidenceBasedCare #SupportFamilies
Gabriella True
