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Committee lays over bill to make rare disease council budget permanent
Summary
The Minnesota House Health Finance and Policy Committee heard testimony supporting House File 1501, which would set the Minnesota Rare Disease Advisory Council's current fiscal budget as an ongoing base; the committee laid the bill over for possible inclusion in the omnibus bill.
The Health Finance and Policy Committee on March 10 laid over House File 1501 for possible inclusion in the omnibus bill after testimony about making the Minnesota Rare Disease Advisory Council's current fiscal-year budget the council's permanent base.
Representative Murphy introduced the bill, saying, “15‑01 appropriates money to the general fund for the rare disease council … in the area of $342,000 to run the Minnesota rare disease council.” Erica Barnes, executive director of the Minnesota Rare Disease Advisory Council, testified in support: “The Minnesota Rare Disease Advisory Council is a state agency established in 2022 whose mission is to improve care for the 1 in 10 Minnesotans living with a rare disease.”
Barnes told the committee the council transitioned from the University of Minnesota and worked with Minnesota Management and Budget to set an operating budget that satisfies compliance and program needs. She said the council’s work shortens diagnostic times, convenes dispersed patient communities and helps accelerate research through partnerships with institutions such as the University of Minnesota and the Mayo Clinic.
Committee members asked for budget detail. Barnes said the total appropriation last year was $668,000, a mix of ongoing and one‑time funds: “The base amount that’s ongoing is $326,000 … and then last legislative session … $342,000 was given as a one‑time [appropriation],” she said. She said the council would return to about 1.8 full‑time equivalent staff if the ongoing base is not funded; she said comparable state agencies typically have roughly four FTEs.
Members who spoke in support or to clarify included Representative Hewitt, Representative Liebling and Representative Hemmingsen‑Yeager. Hewitt thanked Representative Murphy and others for active engagement. Liebling asked for more detail about line items and what the additional funds would be used for; Barnes said she had submitted a line‑item document to the committee and offered to provide further detail. Hemmingsen‑Yeager described the council as a valuable convening body across lab, clinic and policy realms.
No formal vote was taken on the bill at the hearing. Chair Bakker said the bill would be “laid over for possible inclusion” in the omnibus bill.
If approved in the legislature, the bill would make the council’s current fiscal‑year budget the permanent base to support ongoing work on policy recommendations, provider tools and convening small patient communities. Committee members asked staff and the author to provide additional budget documentation ahead of further action.
The committee moved next to other agenda items after laying over the measure.
