Bill > HB910

This bill establishes a Rare Disease Advisory Council (RDAC) in Hawaii to address the challenges faced by individuals with rare diseases, which are defined as conditions affecting fewer than 200,000 people in the United States. The bill aims to increase awareness, improve medical intervention, and provide better support for rare disease patients, with a specific focus on velocardiofacial syndrome (22q11 deletion syndrome). The council will be composed of at least 16 members representing various stakeholders, including patients, healthcare providers, researchers, and government representatives, and will be tasked with conducting public hearings, developing policy recommendations, evaluating healthcare coverage, identifying research needs, and distributing educational resources. The bill also requires the Department of Health and Department of Education to emphasize the importance of annual physical examinations for children, and amends the insurance code to include coverage for individuals with velocardiofacial syndrome and other genetic disorders, removing cost-sharing provisions. Additionally, the bill establishes a special fund to support the council's activities and appropriates $50,000 for its establishment and operation in fiscal years 2025-2026 and 2026-2027.

Health and Social Services

https://www.capitol.hawaii.gov/session/measure_indiv.aspx?billtype=HB&billnumber=910&year=2025