HB 1019 Summary

• Establishes the Oklahoma Rare Disease Advisory Council within the State Department of Health to provide guidance and recommendations on the needs of individuals with rare diseases in the state.

• Council shall conduct activities including public hearings, policy development for patient access to specialists and healthcare, emergency planning for disease continuity of care, research collaboration, and health equity initiatives.

• Governor appoints council chair by December 1, 2025, and chair appoints at least 17 members including patients, caregivers, healthcare providers, researchers, and industry representatives from diverse geographic and population backgrounds.

• Council must submit annual reports to state leadership and the Governor beginning within one year of establishment, with draft reports made available for public comment; initial council meeting required by February 1, 2026, with quarterly meetings thereafter.

• Defines "rare disease" as affecting fewer than 200,000 people in the United States; chair serves initial three-year term with two-year terms thereafter; council members serve up to three years, or up to four years during the first five years for continuity purposes; effective date November 1, 2025.