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Committee hears emotional testimony for bill to require insurance coverage for PANS/PANDAS
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Summary
Lawmakers heard parents, a Stanford-affiliated physician and the Division of Insurance on HB292, which would require insurers (including Medicaid) to cover diagnosis and treatments for pediatric autoimmune neuropsychiatric disorders; the committee set an amendment deadline for April 23.
Representative Julie Colom introduced HB292 on behalf of families who say insurance routinely denies care for pediatric autoimmune neuropsychiatric disorders known as PANS and PANDAS. Colom told the committee the bill would require coverage for prophylaxis, diagnosis and treatment and add Medicaid language; staff read a sectional that adds a new AS 21.41 provision with an effective date of 01/01/2027.
Parents who testified urged prompt passage. Rebecca Collins described her son’s abrupt decline after a strep infection and pleaded with lawmakers: "Please support our future by supporting Finn's bill." Michelle Hayworth told the committee her 14‑year‑old was placed in McLaughlin Youth Center after escalating behaviors and said early recognition and anti‑inflammatory treatment restored her daughter's functioning.
Dr. Angela Tang, an adjunct professor who works with the Stanford PANS clinic and whose son had PANS, described clinical pathways and insurer behavior. She said insurers commonly deny IVIG and other immune‑modulating therapies as "experimental," creating multi‑month delays: "When the prescription makes it to the insurance company, it is basically auto denied," Tang said, adding that independent medical reviews often ultimately side with families but take many months.
Heather Carpenter, director of the Division of Insurance, told members the division had no PANS/PANDAS‑specific complaint counts available in the hearing but described the external health‑care review process and said her office will work with the sponsor on technical fixes. Co‑chair Fields and other members pressed staff on wording and technical changes; the committee set an amendment deadline for HB292 for Thursday, April 23 at 5 p.m.
The bill would require insurers to provide timely coverage "for the current standard of care as prescribed by their treating provider," and staff said Sections 2–5 add Medicaid to the bill language. No final committee vote occurred; the committee set a deadline for amendments and will revisit the bill.
