HB 2758 Summary

• Establishes the Arizona Rare Disease Advisory Council within the Department of Health Services to provide guidance and recommendations on rare disease needs to the public, legislature, and government agencies.

• Council consists of 16 appointed members including physicians, nurses, geneticists, hospital administrators, patients, caregivers, researchers, pharmacists, insurers, and industry representatives, all full-time Arizona residents if practicable.

• Members serve three-year staggered terms without compensation but eligible for expense reimbursement; initial council must meet within 90 days and at least monthly during the first year, with public meetings and website for transparency.

• Council may conduct public hearings, provide testimony on legislation, research rare disease barriers including drug pricing and prior authorization, and make recommendations to improve healthcare coverage and provider access.

• Council must submit annual reports by December 1 to the governor and legislative health committees describing activities and recommendations for addressing rare disease patient needs in Arizona.