Draft bill would let Vermont health commissioner appoint members to Rare Disease Advisory Council; directs health department to publish long COVID resources

A draft measure (2.1) reviewed at a Health & Welfare meeting would move many appointment powers for a proposed Rare Disease Advisory Council from legislative positions to the commissioner of health and add a tasking for the Vermont Department of Health to identify and publish existing long COVID resources for clinicians and patients.

Alisa, the bill presenter, said draft 2.1 replaces several previous appointing authorities with appointments made by the commissioner of health for specific seats, including two positions for individuals with lived experience, a parent or guardian of someone with lived experience, an academic researcher and a geneticist; the pharmacist seat would be appointed by the Vermont Pharmacist Association. The draft also establishes staggered five-year terms, states that midterm vacancies are to be filled by the original appointing authority for the remainder of the unexpired term, and specifies terms begin on January 1 and end December 31 of the member’s final year.

The bill text would give the advisory council the administrative, technical and legal assistance of the Department of Health, require the department to maintain a web page with meeting notices, minutes, public comments and reports, and direct that meetings be held quarterly in accordance with Vermont open meeting law. The draft also calls for the council, in consultation with rare-disease experts, to develop policy recommendations identifying conditions for the department to consider when creating appropriate screening guidance and recommendations.

Jessica Chapano, Department of Health, told the committee the rare disease advisory council language "incorporated what we have recommended," and that the department was satisfied with that portion of the draft. On the long COVID section, Chapano said, "the department of health also is not positioned to create clinical guidance on this issue," and recommended the bill instead emphasize identifying existing evidence-informed treatment standards, best practices and training and then sharing those resources via the department’s website and existing provider communication channels.

The draft’s Long COVID provisions, as presented, would rename the section to focus on resources for primary care providers and patients and encourage recommendations of peer and community-based programs — the presenter cited the University of Vermont Medical Center and the Vermont Center for Independent Living as examples — as well as strategies to support patients who are homebound or at risk of becoming homebound. Chapano asked the bill drafters to focus on collating and sharing existing standards and supports rather than creating new clinical standards in-house.

Committee members and department staff discussed practical steps for dissemination to primary care clinicians, including existing outreach mechanisms the department uses (described in the meeting as 'pods') and coordination with collaborators named in the discussion. The presenter said she would integrate the health department’s emailed markups and circulate a revised draft before the next meeting.

No formal motion or vote was recorded on the floor about draft 2.1 during the session. The meeting moved to a deferred budget request for service-supported housing funds while organizers awaited additional attendees.