MS SB2463

University of Mississippi Medical Center (UMMC), State Department of Health, Division of Medicaid, and Mississippi Health Information Network (MS-HIN) shall cooperate to prepare a comprehensive report on rare diseases in Mississippi

Report must include incidence of rare diseases in the state, status of the rare disease community, and treatment and services provided to persons with rare diseases

State Department of Health, Division of Medicaid, and MS-HIN shall provide UMMC with all claims data, patient encounter data, and related research documentation on rare disease diagnosis and treatment

Report shall be presented to the Chairs of the House Public Health and Human Services Committee, Senate Public Health and Welfare Committee, and the House and Senate Medicaid Committees no later than December 1, 2019

Legislature finds that rare diseases affect approximately 30 million people in the United States, with 80% being genetic in origin, and that Mississippians with rare diseases face challenges including diagnostic delays, specialist shortages, and cost barriers