MI HB4654

Creates a rare disease advisory council within the Department of Health and Human Services to advise the department and state agencies on research, diagnosis, and treatment of rare diseases affecting fewer than 200,000 individuals in the United States.

Council membership includes the department director, one physician, one registered nurse, one epidemiologist, two hospital representatives, one health insurer representative, one HMO representative, two biopharmaceutical industry representatives, two rare disease researchers, one member each nominated by the House speaker and Senate majority leader, one gubernatorial appointee, three parents of children with rare diseases, three individuals with rare diseases, two rare disease patient organization representatives, one medical ethicist, one pharmaceutical industry representative, and one genetic counselor.

Council must research treatment access and cost-effectiveness, identify best practices from other states, coordinate with other organizations, serve as advisory body to legislature and governor, and collect data on rare diseases.

Council must develop and maintain a list of rare diseases by December 21, 2022, annually investigate one rare disease from the list, and submit written reports to the legislature biannually beginning December 21, 2022.

Members serve four-year terms without compensation but may be reimbursed for expenses; council must meet at least quarterly and comply with open meetings and freedom of information laws.