MS HB1044

Creates the Mississippi Rare Disease Advisory Council at the University of Mississippi Medical Center to advise the Legislature and state agencies on needs of individuals with rare diseases.

Council membership must include at least 2 academic researchers, 2 geneticists, 1 genetic counselor, 1 nurse, 2 physicians, 2 hospital administrators, 2 persons with rare diseases, 1 caregiver, 3 patient organization representatives, plus pharmacist, biotech industry representative, health plan representative, and scientific researcher.

Council duties include conducting public hearings, researching policy recommendations on insurance access and treatment, evaluating newborn screening and Medicaid coverage, publishing resources on rare diseases, and establishing training policies for healthcare providers.

Establishes a board of directors comprising the State Health Officer, Medicaid Director, Insurance Commissioner, State Superintendent of Education, one industry representative, one patient representative, and an executive director to govern the council.

Council must submit annual reports to Governor and Legislature beginning July 1, 2022, describing activities, progress, funding status, and recommendations for addressing rare disease needs; initial council and board meetings must occur before October 1, 2021.