Section 41-145-5 - Council duties; annual report(1) The council shall perform the following duties: (a) Convene public hearings, make inquiries and solicit comments from the general public in Mississippi to assist the council with developing a first year landscape of rare diseases in the state.(b) Consult with experts on the board of directors, council and externally, as needed, on rare diseases to develop policy recommendations to improve access and quality of care for health insurance, education and treatment in the state.(c) Research and make policy recommendations to the Legislature on access to insurance, specialists and other needed services for patients with rare diseases.(d) Research and make recommendations to state agencies and insurers that provide services to persons with a rare disease on the impact of coverage, cost-sharing, tiering or other utilization management procedures on the provision of treatment and care services.(e) Research and identify priorities relating to treatments and services provided to persons with rare diseases in Mississippi, and develop policy recommendations that include safeguards against discrimination for these populations on these and related issues.(f) Evaluate and make recommendations to improve the state's newborn screening program.(g) Evaluate and make recommendations to improve Medicaid coverage for approved treatment and medications for rare disease patients.(h) Publish a list of existing, publicly accessible resources on research, diagnosis, treatment and education relating to those rare diseases in Mississippi, including publishing the information on a state webpage.(i) Collect additional research topic areas from the public to inform future studies and reports on which the council can work for the state.(j) Establish policies for training academic institutions, state agencies, health care professionals and others to foster a greater understanding of rare diseases in Mississippi.(k) Identify a mechanism for sharing best practices for health care providers to ensure they are informed adequately of the most effective strategies for recognizing and treating rare diseases in Mississippi.(2) The council shall submit an annual report on its activities to the Governor and Legislature before July 1 of each year, with the first report being due before July 1, 2025. The report must describe the activities and progress made by the council on the duties prescribed under this section and give an update on the status of funding for the council, including information on grant applications and which grants were accepted, used and have remaining balances. The report also must include recommendations on ways to address the needs of people living with rare diseases in the State of Mississippi.Added by Laws, 2024, ch. 311, SB 2156,§ 3, eff. 7/1/2024.