Creating a rare disease advisory council

The bill specifies the duties of the council including: convening public hearings, making inquiries, and soliciting comments from the general public to assist the council in surveying the needs of persons with a rare disease, caregivers, and providers in the state; consulting with experts on rare diseases to develop policy recommendations to improve patient access to and the quality of rare disease specialists, affordable and comprehensive health care coverage, relevant diagnostics, timely treatment, and other services; researching and making recommendations to state agencies and insurers that provide services and coverage to persons with a rare disease on the impact of coverage, cost-sharing, tiering, or other utilization management procedures on the provision of treatment and services; researching and identifying priorities related to treatments and services provided to persons with a rare disease in the state and develop policy recommendations that include safeguards against discrimination for these populations, including in disaster and public health emergency-related planning; evaluating and making recommendations to improve the newborn screening program; evaluating and making recommendations to improve Medicaid coverage of treatment and medications for persons with a rare disease; publishing a list of existing, publicly accessible resources on research, diagnosis, treatment, and education relating to the rare diseases in the state on the HHS internet site; identifying areas of unmet needs for research and to inform the work of the council; establishing resources for academic institutions, state agencies, health care professionals, and other entities to provide a basis for training on rare diseases in the state; identifying and distributing educational resources for health care providers to foster recognition and optimize treatment of rare diseases in the state; researching and identifying best practices to reduce health disparities and achieve health equity in research, diagnosis, and treatment of rare diseases in the state; establishing best practices and protocols to use during a state of emergency to aid persons with a rare disease; and coordinating with rare disease and related entities, community-based organizations, and other public and private organizations in performing its duties to ensure greater cooperation between this state, other states, and the federal government regarding the research, diagnosis, and treatment of rare diseases. The council may solicit funds and accept donations, gifts, and bequests approved by the council in accordance with the duties of the council. The council shall submit an annual report to the governor and the general assembly, and publish the annual report on the HHS internet site, summarizing its activities for the prior year, updating the status of funding, and providing recommendations to address the needs of persons living with a rare disease in the state.