Bill Summaries: H935 (2023-2024 Session)

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  • Summary date: Apr 30 2024 - 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 19 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 15 members in line with the qualifications listed in the statute.

    Amends the appointed membership as follows:

    • increases number of physicians from one to two;
    • removes rare disease survivor, rare disease foundation, parent of childhood rare disease survivor, and medical researcher appointees;
    • removes appointees who are chairs of the NCGA Joint Legislative Oversight Committee on Health and Human Services, or their designees;
    • decreases the number of researchers from State academic research institutions to one receiving any grant funding for rare disease research (currently one representative per State institution receiving any such grant funding);
    • adds the following appointees:
      • one hospital administrator, or the hospital administrator's designee, representing a hospital in the State that provides care to persons diagnosed with a rare disease;
      • two persons age 18 or older who have been diagnosed with a rare disease; two persons age 18 or older who are, or were previously, caregivers to a person diagnosed with a rare disease;  
      • one representative of a rare disease patient organization that operates in the State;
      • one pharmacist licensed and practicing in this State with knowledge and experience regarding drugs used to treat rare diseases;
      • one representative of the life sciences, biotechnology, or biopharmaceutical industry that either focuses on research efforts related to the development of therapeutic products for persons diagnosed with a rare disease or has demonstrable understanding of the path to commercialization of such products;
      • two representatives of a health benefit plan or health insurer, at least one of whom is a representative of a North Carolina Medicaid Managed Care health plan;
      • one genetic counselor with experience providing services to persons diagnosed with a rare disease or caregivers of persons diagnosed with a rare disease;
      • one member appointed by the President Pro Tempore of the Senate;
      • one member appointed by the Speaker of the House of Representatives; and
      • one member appointed by the Governor. 

    Provides for terms for each of the initial appointed representatives and term limits of three consecutive terms, except that the initial physician member and initial member representing a rare disease patient organization can serve up to four terms. Thereafter, directs that members appointed by the President Pro Tempore of the Senate, the Speaker of the House of Representatives, and the Governor will serve for a term of two years and members appointed by the Secretary will serve for a term of two, three, or four years as determined by the chair of the advisory council. Provides for filling vacancies, member removal, and selection of a chair by a majority vote. Requires that the Advisory Council 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. Makes technical changes.  

    Effective July 1, 2024, appropriates from the General Fund to DHHS the sum of $250,000 in recurring funds for the 2024-25 fiscal year to be allocated to cover the administrative costs of the Advisory Council on Rare Diseases.