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Committee directs study of PANS/PANDAS, hearing sponsors and members cite misdiagnosis and insurance gaps
Summary
The committee adopted an agreed amendment and voted to report House Resolution 5‑28 as amended, directing the Joint State Government Commission to study pediatric acute‑onset neuropsychiatric syndrome (PANS) and PANDAS and report within 18 months; sponsors and several members shared personal accounts and said provider capacity and insurance coverage are limited.
The House Health Committee adopted amendment A03651 and voted to report House Resolution 5‑28 as amended, a study resolution directing the Joint State Government Commission to research PANS (pediatric acute‑onset neuropsychiatric syndrome) and PANDAS (pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection) and report findings within 18 months.
Mr. Sighet explained the resolution’s charge, which includes examining insurance coverage, the number of practitioners treating the conditions, and what other states have done. "House resolution 5 28 will direct the joint state government commission to research and report various issues related to PANS and PANDAS, including insurance coverage, number of practitioners who treat it, and what other states have done," Mr. Sighet said.
Sponsor Rep Cooper described family experiences and the sudden onset of severe neuropsychiatric symptoms in children, saying the conditions are often misdiagnosed and that prompt diagnosis and treatment can enable recovery. Rep Rossi and other members shared similar personal accounts and expressed support. Committee members also noted that provider expertise is limited and insurance coverage inconsistent, leaving families with financial hardship.
The committee adopted amendment A03651—which removes the Pennsylvania Rare Disease Advisory Council from the resolution’s list of participants and clarifies the commission’s role—and the resolution was reported as amended with no recorded negative votes.
Next steps: The joint state government commission is directed to study the listed topics and report recommendations, including potential legislation, within 18 months.
