Bill > HB943

This bill establishes the Montana Rare Disease Advisory Council, a 17-member council within the Department of Public Health and Human Services designed to address challenges faced by individuals with rare diseases. The council will be composed of diverse members representing various stakeholders including healthcare professionals, researchers, patient advocates, government representatives, and individuals directly affected by rare diseases. Members will be appointed by the governor for terms up to 4 years and will serve without additional compensation, though they can receive travel expense reimbursement. The council's key duties include conducting public hearings, developing policy recommendations to improve patient care and access to services, publishing resources on rare diseases, identifying research needs, and distributing educational materials to healthcare providers. The council will be required to meet at least monthly in its first year and quarterly thereafter, and will submit annual reports to the governor and legislature detailing its activities, funding status, and recommendations for addressing rare disease challenges. The bill includes an initial appropriation of $16,000 from the general fund to support the council's operations, with the intention that this funding be considered part of the ongoing base budget for future legislative sessions. The council aims to educate and advise medical professionals, government agencies, and the public about rare diseases, which affect over 30 million Americans and often lack approved treatments.

Health and Social Services

https://bills.legmt.gov/#/laws/bill/2/LC4182