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Families and experts urge action on PANS/PANDAS coverage; committee delays amendment to allow engrossing
Summary
Families testified about life-changing responses to IVIG treatment and barriers to coverage for PANS/PANDAS. Sponsor Senator Hammer sought time to refine an amendment with insurers and UAMS; the committee heard testimony but did not adopt the amendment and agreed to return with an engrossed bill next Tuesday.
The Senate Insurance & Commerce committee heard compelling testimony from families and health providers on SB252, a bill intended to create a process for insurance coverage of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANS/PANDAS) and for related treatment.
Sponsor Senator Hammer described extensive dialogue in recent days among insurers, the University of Arkansas for Medical Sciences (UAMS) and family advocates and presented a multi-page amendment. He asked the panel to hear family testimony and to allow technical fixes and engrossing before returning the bill next Tuesday rather than adopt the amendment immediately.
Representative Les Warren introduced Kathy Puckett, who testified that her son Cameron received IVIG treatment in 2016 and recovered, but later lost access to the treatment and was placed in a facility; she said IVIG had restored her son’s functioning and urged coverage for diagnosis and treatment. Becky Wallace described the death of her son Max, who she said took his life while awaiting IVIG.
Medical and provider witnesses, including Matt Brumley of the Saline Health Foundation, described diagnostic complexity, inconsistent diagnostic codes and difficulties with preauthorization and reimbursement that force some families to seek out-of-state care. Brumley and others said Illinois and Delaware have taken steps to require or enable coverage but that diagnostic consensus remains challenging.
Committee members asked about diagnostic codes, whether the condition could be considered a form of encephalitis, and how Medicaid and Arkansas Works interact with any coverage changes. Sponsor Hammer and others emphasized the need to develop a clear, interdisciplinary diagnostic pathway (including a UAMS-based review team and outside reviewers) so insurers can have a consistent process for payment decisions.
The committee did not adopt the amendment that day; members supported further drafting and engrossing so the bill can return with clearer language. Senator Hammer asked the rules be suspended on the Senate floor to allow the engrossed amendment to be considered next week.
