MI HB5946

Creates the Cystic Fibrosis Advisory Committee within the Department of Health and Human Services to address cystic fibrosis patient needs and research in Michigan.

Committee membership consists of 15 members appointed by the governor, including representatives from seven cystic fibrosis foundations, two department officials, two cystic fibrosis specialists, three healthcare professionals (nurse, social worker, respiratory therapist), and five individuals with direct or familial cystic fibrosis experience.

Members serve one-year terms without compensation but may be reimbursed for actual and necessary expenses; the committee must meet at least quarterly and operate in compliance with open meetings and freedom of information laws.

Committee duties include reviewing novel therapies and treatments, analyzing healthcare and medication access barriers, evaluating research funding opportunities at state institutions, studying impacts of schooling and employment on cystic fibrosis patients, and examining other cystic fibrosis-related issues.

Committee must submit an annual report by December 31 to the House and Senate with legislative recommendations addressing access to care, treatment options, research funding, and patient education or employment issues.