HF3841 Summary

• Eliminates four legislative members from the Rare Disease Advisory Council and reorganizes membership into separate subdivisions for public members, legislative members, and ex officio members.

• Creates a new "ad hoc membership" category allowing up to a specified number of temporary members appointed by the executive committee to provide additional expertise on particular projects, with one-year initial terms renewable for up to two additional years.

• Adds statutory requirements that legislative members and ad hoc members cannot vote on decisions related to state grant issuance.

• Appropriates unspecified general fund amounts for fiscal years 2025-2028 to the Rare Disease Advisory Council to study sustainable reimbursement models for gene therapies and issue recommendations to the legislature, payers, hospitals, and manufacturers.