Committee reviews H.46 creating a Rare Disease Advisory Council; outlines membership and duties

The House committee on Housing and Services reviewed H.46, an act to create a Rare Disease Advisory Council within the Vermont Department of Health and to add a new chapter in Title 18 governing rare diseases. Katie, legislative counsel, described the bill’s structure, membership, duties and reporting requirements.

Katie said the bill would create the advisory council “to provide guidance and recommendations to the public, general assembly, and other government agencies and departments as necessary regarding the needs of individuals living with rare diseases in Vermont.” The draft sets out membership categories that include the commissioner of health (or designee), the commissioner of DCF or designee, the commissioner of financial regulation or designee, the director of the Office of Racial Equity, two individuals living with rare diseases (one appointed by the Speaker of the House and one by the Senate Committee on Committees), a representative of an academic research institution, a caregiver, a physician and nurse with experience treating rare diseases, a geneticist or genetic counselor, a representative of health insurers serving Vermonters, a biopharma industry representative and a representative of a rare disease patient organization operating in Vermont. The bill includes a mechanism to ensure an odd number of members by authorizing the governor to appoint an additional member if needed to prioritize patient and caregiver representation.

Under the bill the council would convene public hearings, solicit public comment, review the Department of Health’s prior presentation on rare disease public‑health impact (cited as required by Act 164 of last year), consult experts to develop policy recommendations, publish a list of publicly accessible resources on research, diagnosis and treatment, and report annually to policy committees with findings, progress and funding needs. The council would receive administrative, technical and legal assistance from the Department of Health, meet at least monthly in its first year, maintain a webpage with meeting materials and public comments, and could pay members and reimburse expenses for not more than 12 meetings annually.

Committee members raised technical questions about membership categories and wording. One member asked what would happen if a qualifying academic research institution did not exist in state; members agreed the language could be adjusted and that the draft represented a starting place. A member also asked whether geneticists and genetic counselors are distinct roles; sponsors and staff said they expected to receive feedback and that the bill could be refined based on stakeholder comments.

Members noted a recent federal change affecting newborn screening guidance and said that with reduced federal coordination states may need to provide more of this work themselves. Dan said a recent news story reported that a federal advisory committee on newborn screening had been defunded, increasing the need for state‑level coordination. Staff told the committee that the Department of Health will be among the witnesses the committee hears on H.46 in upcoming meetings.

The committee did not take formal action on H.46 at this meeting; staff said witnesses are scheduled and that the committee will receive presentations and hold votes on related items in future sessions.