Bill
HB 1166
The bill reorganizes the Rare Diseases Advisory Council, places it under DHHS with UNC Chapel Hill support, and funds it to improve coordination, research, diagnosis, and treatment
Title: Reorganize and Fund Rare Disease Advisory Council
Purpose and intent
- The bill reorganizes the existing structure and leadership of the Advisory Council on Rare Diseases, transfers oversight to the Department of Health and Human Services (DHHS), and appropriates funds to cover the council’s operating expenses.
- Overall aim: improve coordination, research, diagnosis, treatment, and education related to rare diseases in North Carolina.
Key provisions and changes
- Reorganization and transfer
- Rewrites Part 6 of Article 1B, Chapter 130A to establish and reorganize the Taylor’s Law framework for the Advisory Council on Rare Diseases.
- The council would be housed within the University of North Carolina at Chapel Hill School of Medicine but advised to the Governor, the DHHS Secretary, and the General Assembly; the bill contemplates DHHS involvement in operating support.
- Membership and composition (Section 1(a1) and 1(b))
- The advisory council would comprise 19 members, with a mix of medical professionals, researchers, patients, caregivers, and industry representatives.
- Specific categories include: two physicians; a medical researcher; a licensed nurse; a rare disease survivor; a rare diseases foundation representative; a representative researcher from each state-funded academic research institution receiving rare disease funding; a parent of a childhood survivor; hospital administrator; two adults diagnosed with a rare disease; two adults who are or were caregivers; a patient organization representative; a licensed pharmacist; a life sciences/biotech/biopharma industry representative focused on rare diseases; two health plan/insurer representatives (at least one from a North Carolina Medicaid Managed Care plan); a genetic counselor.
- Ex officio/nonvoting member: the Secretary of DHHS (or designee).
- Additional appointees: Chairs of the Joint Legislative Oversight Committee on Health and Human Services (or designees) and one member each appointed by the President Pro Tempore of the Senate, the Speaker of the House, and the Governor.
- Terms and vacancies (Section 1(c))
- Initial terms: three years for all initial appointees, with exceptions allowing up to four consecutive terms for the initial physician members and the initial rare disease patient organization representative.
- Other appointees (Senate/House/Governor): two-year terms; DHHS Secretary appointees: two, three, or four-year terms as determined by the council chair.
- Vacancies filled for the remainder of the unexpired term; appointing authorities may remove members for misfeasance, malfeasance, or nonfeasance.
- Per diem and administrative support (Section 1(d)-(1(e))
- Members receive per diem and travel/subsistence expenses per state law (G.S. 138-5/138-6 or G.S. 120-3.1, as applicable).
- Administrative support and services to be provided by UNC Chapel Hill School of Medicine.
- Leadership and meetings (Section 1(f)-(1(g))
- The Secretary selects the council chair from among members, serving until the end of the term.
- First meeting deadline: no later than October 1, 2015 (note: this appears to be a drafting artifact; intended timelines may require alignment with enactment date).
- Quorum and meetings: a majority of members constitutes a quorum; majority vote of a quorum required for official actions; minimum quarterly meetings, with more frequent meetings as needed.
- Powers and duties (Section 1(g) and Section 1(h)-(1)2)
- Advise on statewide coordination for rare diseases, including incidence studies, public awareness, policy issues, and state/federal initiatives; and on state funding allocations for awareness and treatment.
- Annual reporting to the Governor, Secretary, Joint Legislative Oversight Committee on HHS, and the Fiscal Research Division on activities, findings, and recommendations (initial report due January 1, 2016, and annually thereafter). Also may recommend statutory changes, structure, organization, and authority of the council.
- Consult with accredited medical schools, schools of public health, and hospitals on access to and quality of treatment and services for rare diseases.
- Advise with DHHS, the Medicaid Drug Utilization Review Board, and the Medicaid Preferred Drug List Review Panel to develop recommendations and programs related to diagnosis and treatment.
- Identify additional areas for study and evaluation.
Funding and effective date
- Section 2: Beginning July 1, 2026, the General Fund would appropriate $250,000 in recurring funds to DHHS to cover the operating expenses of the Advisory Council on Rare Diseases (for the 2026-2027 and subsequent fiscal years).
- Section 3: The act becomes effective when it becomes law, subject to any specified exceptions.
Potential impact
- Administrative: Creates a restructured, larger, and potentially more diverse council with formal DHHS operating support, aligning rare disease oversight with state health policy and funding.
- Financial: Provides a dedicated annual operating budget of $250,000 to support council activities and operations starting in FY 2026-27.
- Policy and programmatic: Enhances coordination across medical schools, public health, hospitals, patient organizations, insurers, and industry; strengthens reporting and accountability to the General Assembly; supports policy development and dissemination of information about rare diseases in North Carolina.
Notes
- Several timeline elements (e.g., first meeting by October 1, 2015) appear inconsistent with the 2025/2026 legislative timeline and may reflect drafting remnants needing alignment with the act’s enactment date. Final language may adjust those dates.
Effective date
- Absent other provisions, the act becomes law upon enactment, with the funding effective July 1, 2026.
Compiled from official sources — confirm details with the bill’s official record.
Sign in to ask a question.
