S.F. No. 5160 Summary

• Removes four legislative members from the Rare Disease Advisory Council and consolidates legislative membership into a new subdivision with two senate members and two house members appointed by their respective leaders.

• Creates new subdivisions establishing separate categories for ex officio members (commissioner of health, Mayo Medical School representative, University of Minnesota Medical School representative) and ad hoc members appointed by the executive committee for specific projects.

• Ad hoc members serve one-year terms renewable for two additional one-year terms and cannot vote on governance matters, executive committee positions, or grant issuance decisions.

• Clarifies that legislative members and ad hoc members cannot deliberate or vote on decisions related to state grant issuance.

• Appropriates unspecified general fund amounts for fiscal years 2025-2028 for the council to study sustainable reimbursement models for gene therapies treating rare diseases and issue recommendations to the legislature, payers, hospitals, and manufacturers.