Bill > SB1497

This bill establishes a Rare Disease Advisory Council within the Hawaii Department of Health to address the challenges faced by individuals with rare diseases, which are defined as conditions affecting fewer than 20,000 people in the United States. The council will consist of 14 members, including ex officio representatives from state health and insurance departments, two state legislators, and ten appointed members representing various stakeholders such as researchers, healthcare professionals, biopharmaceutical manufacturers, and people directly impacted by rare diseases. The council's key responsibilities include developing a comprehensive survey of rare disease patient needs, creating policy recommendations to improve patient access to healthcare and specialized treatments, researching health disparities, identifying research priorities, establishing educational resources for healthcare providers, and developing best practices for supporting rare disease patients during emergencies. The council will be required to submit a detailed report to the governor and legislature every three years, outlining its accomplishments, progress, and recommendations. This initiative is part of a broader national trend, with 29 other states already having similar advisory councils to support their rare disease communities and address the unique challenges these patients face in obtaining diagnosis, treatment, and comprehensive care.

Health and Social Services

https://www.capitol.hawaii.gov/session/measure_indiv.aspx?billtype=SB&billnumber=1497&year=2026