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
3 comments to Joint Rebutttal Statement to the AAP
sue porter
August 12, 2025I totally agree that AAP should publicly apologize and retract their unsubstantiated claims concerning the diagnosis and treatment of Autism Spectrum Disorders.
Karla Aceves
August 12, 2025I urge that all pediatricians rely on peer -reviewed clinician guidelines like the JCAP to help our children heal. On February of 2025 my daughter started on 4 month severe flare that was treated in 3 different medical hospitals where non followed PANS/PANDAS protocols despite her diagnosis since the age of 12 and history with Mycoplasma/strep induced mania, enuresis, aggression and tics. She spent 6 weeks in 2 different psych facilities and it was ONLY after being treated with STEROIDS and IVIG that she slept and came back to reality. PANDAS treatment WORKS. IT WORKS , IT WORKS. Please help our children.
Lea
August 12, 2025The report used as guideline for treatment is not just inaccurate or incorrect, but harmful for PANS/PANDAS patients and their families in multiple ways.