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Committee backs rare‑disease advisory council bill to collect data, advise policy
Summary
HB 943 would create a Montana Rare Disease Advisory Council to inventory services, collect outcome data and advise state agencies; sponsors and DPHHS informational witnesses said the council would help identify gaps for families and caregivers and requires modest appropriations.
Representative Paul Tuss told the House Health and Human Services Committee that House Bill 943 would establish a Montana Rare Disease Advisory Council to gather information on resources, research and gaps in care for Montanans living with rare diseases. "We don't know what we don't know," Tuss said, arguing the council would elevate rare‑disease needs and inform policymakers.
Stacy Campbell, Division Administrator for Public Health and Safety at DPHHS, provided informational background on existing advisory bodies such as the Newborn Screening Advisory Board and said agency staff would answer technical questions about newborn screening and related programs. Committee members asked whether the council would collect outcome data; Tuss said the proposed RDAC would collect both disease data and outcomes to inform policy and service planning.
Ms. Allen summarized the bill during executive action noting a modest fiscal summary: an $8,000 cost to the general fund in each of fiscal years 2026 and 2027 (a $16,000 appropriation). The committee discussed the value of a registry and moved HB 943 to a roll call vote; the measure passed 16‑5 and will move to the floor.
The bill establishes council membership, reporting duties and an appropriation for initial operations; DPHHS would be the administrative partner for convening hearings and consulting experts if the law is enacted.
