An act relating to the Rare Disease Advisory Council

The official version included the full legislative history (original introduced text with 13+ members including insurance and biopharma representatives, monthly meetings, 12-meeting compensation cap, July 1 2025 effective date) followed by the final amended text. The unofficial version presents only the final enacted text.

Header changed from 'BILL AS PASSED BY THE HOUSE AND SENATE' (2025, 16 pages) to 'AS PASSED BY HOUSE AND SENATE' (2026, 6 pages), reflecting a cleaner formatting of the same final law.

Effective date moved up one year from July 1, 2026 to July 1, 2025.

Council membership expanded from 10 to 13 members. Added: Commissioner of Vermont Health Access, Commissioner of Financial Regulation, Director of Office of Racial Equity, a caregiver, a health insurance company representative (jointly appointed by Blue Cross Blue Shield of Vermont and MVP Health Care), a biopharma industry representative, and a rare disease patient organization representative (appointed by the Governor). Removed: parent or guardian member, Commissioner of Disabilities/Aging/Independent Living, Heath Equity Advisory Commission representative, and pharmacist. The 'older Vermonter' requirement for patient members was removed.

Council duties changed from permissive ('may conduct') to mandatory ('shall conduct'). New mandatory duties added: advance affordable and comprehensive health care coverage, provide relevant diagnostic services and improve programs such as newborn screening, ensure timely treatment and other needed services, publish a list of publicly accessible resources on the council's website, and review the Department of Health's January 2025 presentation on rare disease public health impact.

The role regarding newborn screening changed from identifying specific conditions to recommend to the Newborn Screening Advisory Committee to a broader mandate to improve programs such as the State's newborn screening program.

Meeting frequency increased from quarterly to at least monthly during the first year of enactment. Chair changed from an annually elected member to the Commissioner of Health or designee.

Reporting requirement changed from 'as needed, may submit recommendations' to a mandatory annual written report due by December 15 each year, including a description of activities and progress plus an update on funding needs.

Compensation cap increased from 4 meetings annually to 12 meetings annually, with explicit statement that payments shall be made from monies appropriated to the Department of Health.

New provision: if there is an even number of members after appointments, the Governor shall appoint one additional member who aligns with the council's purpose and prioritizes representation of patients and caregivers.

Council membership was restructured: most appointments shifted from the Speaker of the House, Senate Committee on Committees, and Governor to the Commissioner of Health. Removed members include the Commissioner of Vermont Health Access, Commissioner of Financial Regulation, Director of Office of Racial Equity, a caregiver, a biopharma representative, and a rare disease patient organization representative. Added members include a parent or guardian, the Commissioner of Disabilities Aging and Independent Living, a Health Equity Advisory Commission representative, and a pharmacist.

A new Section 3 requires the Department of Health to collaborate with UVM Medical Center, the Vermont Medical Society, and patients by January 1, 2027, to identify evidence-informed standards for primary care providers on long COVID. By February 1, 2027, the department must present recommendations on long-term disability supports for individuals with long COVID. 'Long COVID' is defined as postacute sequelae of SARS-CoV-2 infection.

Staggered five-year terms were added for council members, with terms beginning January 1 and ending December 31. Members may serve multiple terms consecutively or intermittently. Midterm vacancies are filled by the original appointing authority for the remainder of the unexpired term.

The mandatory annual report due December 15 (with specific content requirements about activities and funding needs) was replaced with a discretionary provision allowing the council to submit recommendations 'as needed' to legislative committees.

Council duties were narrowed: removed the requirement to publish a list of resources on its website and to review the Department's January 2025 presentation. Policy recommendations were simplified from four specific areas (access to specialists, affordable coverage, diagnostic services/newborn screening, timely treatment) to two broader areas (screening guidance and access to diagnostics/treatment).

Meeting frequency changed from monthly during the first year (then by call of the Chair) to quarterly, with an added requirement to comply with the Vermont Open Meeting Law. The Chair is now elected annually by members rather than being the Commissioner of Health.

Effective date changed from July 1, 2025 to July 1, 2026. Governor signed the bill on May 18, 2026.

Per diem compensation was reduced from up to 12 meetings annually to no more than four meetings annually.

A new Section 1 with legislative findings was added, stating that lack of awareness causes obstacles like diagnostic delays, misdiagnosis, high out-of-pocket costs, and limited specialist access, and that rare disease advisory councils help states address these barriers.

Policy recommendation duties were narrowed: removed the mandate to advance affordable health care coverage and ensure timely treatment, replaced with a specific duty to identify conditions to recommend to the Newborn Screening Advisory Committee and support timely access to diagnostic services and treatment.

Council membership was reduced from 13 to 10 members. Removed: Commissioner of Vermont Health Access, Commissioner of Financial Regulation, Director of Office of Racial Equity, health insurance company representative (Blue Cross Blue Shield and MVP), biopharma industry representative, and rare disease patient organization representative. Added: a parent or guardian of a person with a rare disease, the Commissioner of Disabilities Aging and Independent Living, a representative of the Health Equity Advisory Commission, and a pharmacist.

The two patient members must now include at least one older Vermonter, and the academic member changed from a representative of an institution receiving grant funding to an individual researcher who conducts rare disease research.

The council's duties were softened from 'shall conduct' to 'may conduct,' and the mandatory annual report due December 15 was replaced with a provision allowing the council to submit recommendations to legislative committees only as needed.

A new collaboration requirement was added directing the council to work with relevant stakeholders including the National Organization for Rare Disorders.

Meeting frequency was reduced from monthly during the first year to quarterly on an ongoing basis, and compensated meetings were cut from 12 per year to 4 per year.

The effective date was delayed one year from July 1, 2025 to July 1, 2026.

The chair role changed from the Commissioner of Health (or designee) serving as chair to a member elected annually by the council itself, giving the council more internal autonomy.