rare disease advisory council

Rare disease patients gain state advisory council

The law creates a council in the Arizona Department of Health Services to advise the state about people with rare diseases. Its 16 positions include state agencies, health care, research, insurers, drug companies, patients, and caregivers. The council may study unmet needs and recommend ways to improve access to specialists, tests, treatment, health coverage, and education. It must offer public input, post notices and minutes online, meet within 90 days after the law takes effect, and meet at least monthly during its first year. By December 1 each year, it must send a report to the Governor and legislative health committee leaders after sharing a draft for public comment and discussing it at an open meeting. Members serve three-year terms without pay, but may get expenses reimbursed; the council may seek gifts, grants, and donations.