AR HB1357

Creates the Rare Disease Advisory Council within the Department of Human Services to advise on rare diseases as listed by the National Institutes of Health.

Council provides expert clinical advice to the Arkansas Medicaid Drug Utilization Review Board on drugs and treatments for rare diseases, and distributes publicly accessible resources on rare disease research, diagnosis, treatment, and education.

Council consists of 16 members appointed by the Governor (4), President Pro Tempore of the Senate (3), Speaker of the House (3), and chairs of Senate and House Public Health committees (2), plus representatives from patient organizations, academic institutions, physicians, geneticists, and nurses with rare disease experience.

Members cannot simultaneously serve on the Medicaid Drug Utilization Review Board or other drug utilization advisory groups; initial terms staggered at 1, 2, and 3 years by lot, with subsequent appointments serving 3-year terms.

Council must meet at least quarterly, submit annual reports by July 1 beginning in 2024 describing findings and progress, and may receive expense reimbursement and stipends for non-state employees.