HB 5465

Creates the Neurodegenerative Disease Patient Protection and Progress Act. Requires the Department of Public Health to convene a Neurodegenerative Disease Advisory Council within the Department. Sets forth provisions concerning the membership of the Advisory Council, terms of the members, meetings of the Advisory Council, and administrative support, and duties of the Advisory Council Provides that the Director of Public Health shall designate or hire a full-time Neurodegenerative Disease Coordinator within the Department to implement and administer the Act. Requires the Coordinator, acting through and under the supervision of the Director, and with input from the Advisory Council, to develop and publish a State plan to address neurodegenerative diseases. Sets forth required components of the Plan. Establishes a voluntary statewide clinical and population registry to collect de-identified information and, with the patient's informed consent, limited identifying information, to (i) improve understanding of burden imposed by neurodegenerative diseases, natural history, and outcomes, (ii) facilitate public health planning and service delivery, and (iii) support research consistent with applicable privacy protections. Establishes the Neurodegenerative Disease Research Support And Grant Fund to make grants to public or private not-for-profit entities for the purpose of conducting neurodegenerative disease research. Sets forth provisions concerning equity and rural access; coordination with federal programs, academic centers, and private partners; reporting; limitations; and rulemaking. Amends the State Finance Act to make a conforming change. Effective immediately.