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Lawmakers hear emotional testimony for IVIG coverage for children with PANS/PANDAS
Summary
Families and pediatric specialists urged the House to require private insurers to cover initial courses of IVIG therapy for PANS/PANDAS, describing dramatic clinical improvements; insurers warned of uncertain fiscal impacts and the committee took no vote.
Families of children diagnosed with pediatric acute‑onset neuropsychiatric syndromes and dozens of medical experts told the House Health Care & Wellness Committee on Jan. 16 that intravenous immunoglobulin (IVIG) therapy can be life‑changing for a small subset of severely affected children and should be covered by private, fully insured plans.
Committee staff described House Bill 2196 as requiring fully insured plans issued or renewed on or after Jan. 1, 2027, to cover an initial three‑month course of IVIG for PANS and PANDAS when certain clinical thresholds are met (after trials of less intensive therapies and with specialist recommendation), with subsequent courses covered when medically necessary. The staff summary noted that Washington Medicaid already covers up to three monthly IVIG therapies under specific clinical conditions.
Several family members testified about children who abruptly deteriorated and later regained function after IVIG; Aaron Klesick described his son Grayson’s hospitalization, wheelchair dependence, and recovery after IVIG, and Grayson spoke briefly in favor. Medical experts including Dr. Kiki Chang, Dr. Patrick Whelan, and other pediatric specialists described stepwise guidelines in which IVIG is reserved for moderate‑to‑severe illness after other trials have failed and emphasized that only a small percentage of patients receive IVIG. Doctors said IVIG can be administered safely in many settings, sometimes by traveling nurses at home, and that depending on setting costs per infusion can vary widely (witnesses cited figures ranging from about $8,000–$25,000 per infusion in different contexts).
The Association of Washington Healthcare Plans and other insurer representatives warned that new mandates increase premiums and said the fiscal impact is difficult to quantify because the affected population size is uncertain; AWHP cited recent premium increases in the individual and small‑group markets and urged caution on cumulative mandate effects.
No committee vote was taken. Sponsors and families asked members to consider the clinical testimony and to advance coverage parity so commercially insured families would have the same access that Medicaid provides.
