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  • Summary date: Apr 21 2023 - View Summary

    Amends Taylor’s Law Establishing the Advisory Council on Rare Diseases as follows. Amends GS 130A-33.65 by changing the location of the Advisory Council from within the UNC-Chapel Hill School of Medicine to the Department of Health and Human Services (DHHS). Changes the number of the Advisory Council to 22 members and removes the appointing authority of the Dean of the School of Medicine at UNC-Chapel Hill. Instead, allows the DHHS Secretary to appoint 19 members in line with the qualifications listed in the statute.

    Amends the appointed membership as follows: increases number of physicians from one to three; requires two hospital administrators representing hospitals in the State that provide care to persons diagnosed with a rare disease, or their designees, with at least one of the hospital administrators appointed to represent a hospital with a scope of service that focuses on the treatment of pediatric patients diagnosed with a rare disease; three persons aged 18 or older who have either been diagnosed with a rare disease or who are caregivers to a person diagnosed with a rare disease; a representative of a rare disease patient organization in the State; a social worker practicing in the State providing services to persons diagnosed with a rare disease; a pharmacist licensed and practicing in the State with knowledge and experience regarding drugs used to treat rare disease; a licensed dentist practicing in the State with experience treating persons diagnosed with a rare disease; two representatives of the life science industry that either focus on research efforts related to the development of therapeutic products for persons diagnosed with a rare disease or have a demonstrable understanding of the path to commercialization of such products, at least one of whom is currently employed as a professional patient advocate; a representative of the biotech industry; a representative of a health benefit plan or health insurer; a genetic counselor with experience providing services to persons diagnosed with rare diseases or their caregivers. Deletes appointed members that are representatives from academic research institutions in the State that receives any funding for rare diseases research, one rare disease survivor, one member who represents a rare disease organization, and one parent of a rare disease survivor. Provides for terms for each of the appointed representatives and term limits of three consecutive terms (except for the initial physician member, who can serve up to four terms). Provides for filling vacancies, member removal, and selection of a chair by a majority vote. Requires that the Advisory Council’s meet at least quarterly (currently, just need to meet). Makes technical and conforming changes.

    Amends GS 130A-33.66, pertaining to the Advisory Council’s powers and duties as follows. Specifies that the Advisory Council should advise the Governor, the DHHS Secretary, and General Assembly on all of the following, in addition to powers already listed in the statute: coordination of statewide efforts to increase public awareness and understanding of rare diseases; identification of policy issues related to rare diseases and the advancement of policy initiatives related to rare diseases at the State and federal levels; and the appropriation of State funds to facilitate increased public awareness of and improved treatment for rare diseases. Requires the Advisory Council to, in consultation with certain medical schools, other educational institutions with specified programs, and hospitals in the State that provide services to persons with rare diseases, develop resources or recommendations regarding quality of and access to treatment and services available within North Carolina for persons diagnosed with a rare disease. Now requires the Advisory Council to advise and consult with DHHS and other specified boards and panels in developing recommendations, resources, and programs relating to the diagnosis and treatment of rare diseases. Now requires the Advisory Council to identify additional relevant areas for the advisory council to study and evaluate. 

    Requires the DHHS Secretary to appoint the new members described above by September 1, 2023. Requires the co-chairs to the specified NCGA committee listed as members of the Advisory Council in GS 130A-33.65 to appoint any designees to the Advisory Council by September 1, 2023. Requires the Advisory Council Chair to convene the first meeting of the newly constituted Advisory Council by October 1, 2023.