Rare Disease Ombudsperson and Rare Disease Advisory Council.

Existing law establishes the California Health and Human Services Agency, which includes the State Department of Public Health, among other state departments charged with the administration of health, social, and other human services. Under existing law, the State Department of Public Health has authority over various programs promoting public health, including genetic disease testing and newborn screenings. This bill would establish the Office of the Rare Disease Ombudsperson and the Rare Disease Advisory Council within the California Health and Human Services Agency. The bill would require the Rare Disease Ombudsperson to be appointed by the Governor, with recommendations from the agency. The bill would prescribe the duties of the ombudsperson, including advocating for persons diagnosed with rare diseases and ensuring that those individuals are provided with necessary medical services. This bill would specify the purposes of the Rare Disease Advisory Council, including, among others, coordinating statewide efforts for the study of the incidence of rare diseases within the state, and acting as the advisory body on rare diseases to the Legislature and state and private agencies that provide services to persons with rare diseases. Under the bill, the duties of the advisory council would include, among others, adopting implementing regulations, researching and determining the most appropriate method to collect data on rare diseases, and identifying best practices for rare disease care. The bill would specify the composition of the advisory council, including the Rare Disease Ombudsperson and members appointed by the Secretary of California Health and Human Services and the State Public Health Officer. Before any appointments are made, the bill would require the agency to research and report to the Legislature on existing sources of funding that may be used to finance the formation and operation of the advisory council. The bill would require the advisory council to apply for, and accept, any grant of funds from the federal government, private foundations, or other sources, as specified. The bill would require the advisory council to meet at least 3 times annually and to report to the agency and the Legislature every 2 years on its activities, findings, and recommendations.