American academy of pediatrics “clinical report”
Rebuttal
The American Academy of Pediatrics' (“ AAP”) published a “clinical report” on PANS/PANDAS on December 16th, 2024.
The AAP itself explicitly states that this document is not a clinical guideline and should not be used to dictate treatment decisions.
However, because of this “report” pediatric providers are disregarding established clinical guidelines, leading to failures in properly diagnosing and treating PANDAS/PANS. At the same time, insurers are misusing the report as definitive evidence against IVIG, ignoring its limitations, lack of transparency, and omitted research. This misrepresentation threatens access to critical treatment and delays necessary medical care.
Several PANS/PANDAS advocacy groups came together to address these concerns in a coordinated and formal rebuttal that was submitted to AAP leadership. The letter can be found here.
OREGON-2023
IVIG insurance mandate for commercial/private insurers & medicaid coverage
SB 628-PASSED & SIGNED INTO LAW EFFECTIVE 1/1/24
Senator Kate Lieber PASSED Senate Bill 628 which will ensure healthcare coverage alignment from both private and commercial insurers to meet or exceed the coverage set by the State of Oregon for IVIG treatment for children with PANDAS/PANS. The Oregon Health Evidence Review Commission (HERC) passed IVIG coverage for those on Oregon’s Medicaid plan in May of 2022 after a robust year long + review of the evidence, consultation with national experts, testimony from providers, families and allies. SB 628 would ensure health equity for ALL Oregon children.
16 other states have now passed this legislation including New Hampshire, Illinois, Minnesota, Delaware, Arkansas, Indiana, Maryland, Massachusetts, Kansas and Rhode Island.
A recording of the Senate Healthcare Committee meeting can be found here.
WASHINGTON-2026
House Bill 2196, Sponsored by Representative Tarra Simmons had a public hearing January 16th and was voted out of the House Healthcare Committee with a ‘do pass’ February 3rd. It then made its way to the House floor for a vote on February 16th where it successfully passed 83-13. It was referred to the Senate Health & Long Term Care Committee on February 18th. Despite heavy advocacy and broad bi-partisan support, the chair of the committee, Senator Annette Cleveland, refused to schedule the bill for a public hearing by the deadline. A beautiful video of testimonies in support of the bill can be found here.
PREVIOUS YEARS
MEDICAID COVERS IVIG-effective January 1st, 2023
House Resolution 4563 was adopted on February 24th, 2022. This bill was introduced by Representative My-Linh Thai and co-sponsored by Representatives Pollet, Wicks, Orwell, Morgan, Fey, Walen and Callan. This bill serves to call attention to the need for greater awareness while specifying the national standards of care including antibiotics, steroids and IVIG. The Washington House of Representatives recognizes and honors the patients and families affected by PANDAS/PANS and the practitioners who assist them. The full text of the bill can be found here.
IDAHO-2024
HCR 27
ALASKA-2025
Alaka’s Governor, Mike Dunleavy, signed a statewide proclamation for Rare Disease & Disorder on February 28th, 2025 which included PANDAS/PANS and urged Alaskans to support, promote and raise awareness of these disorders.
“WHEREAS, Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus (PANDAS) are autoimmune disorders that can develop in children after an infection, usually strep. They are characterized by the sudden and severe onset of tics or obsessive-compulsive disorder symptoms”;
“Urge all Alaskans to offer support to those who suffer from rare diseases and disorders, promote and raise awareness within their communities, and celebrate the progress made by medical professionals and researchers worldwide.”
FRIDAYS WITH FAMILIES
A LEGISLATIVE CAMPAIGN FEATURING NORTHWEST FAMILIES AFFECTED BY PANDAS/PANS
To join this campaign and share your story, please fill out the application form.
