Committee backs creating Montana Rare Disease Advisory Council; small appropriation in fiscal summary

Representative Paul Tuss told the House Human Services Committee that House Bill 9 43 would establish a Montana Rare Disease Advisory Council to gather information about the needs of Montanans living with rare diseases, and to identify gaps in care and research. "This advisory council will also be in a unique position to inventory what resources are already available in our state to help those with a rare disease," Tuss said.

Tuss said the council would help collect and analyze data on the population and their caregivers so policy makers can make informed decisions. He noted there are over 10,000 known rare diseases nationally and more than 30 million Americans affected.

The Department of Public Health and Human Services’ Stacy Campbell answered committee questions about similar advisory committees at DPHHS and the newborn screening advisory board. Campbell said the newborn screening advisory committee meets twice a year and the department maintains advisory groups for other programs. She told the committee an RDAC could collect outcome and needs data, not just diagnoses.

Committee discussion during executive action summarized the bill’s main elements and the fiscal summary supplied to members. Ms. Allen, the committee staffer, told members the fiscal summary shows an $8,000 cost to the general fund for the council with a $16,000 appropriation across fiscal years 2026–27. Vice Chair moved HB 9 43 do pass; the committee conducted a roll call and later recorded the committee vote as 16 in favor and 5 opposed. The motion carried and the bill was sent to the floor.