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Lawmakers weigh rare-disease advisory council; health department seeks appointment, scope changes
Summary
Advocates and the Vermont Department of Health urged the Senate Health & Welfare Committee to create a rare disease advisory council under H46, while the department recommended giving the commissioner appointment authority, clarifying terms and administrative support, and limiting mandatory duties. Patient testimony highlighted diagnosis delays and high treatment costs.
Carrollyn Sheridan, associate director of state policy for the National Organization for Rare Disorders, told the Senate Health & Welfare Committee that H46 would "activate what is already there," linking Vermont's newborn screening and registries to a formal rare disease advisory council to identify gaps and elevate patient perspectives.
Sheridan said the council would fill a coordination role rather than duplicate existing work: "This is a community of 30 million Americans living with any of over 10,000 known rare diseases," and she argued that council expertise — especially a geneticist or genetic counselor seat — would strengthen newborn-screening recommendations.
During public testimony, Milton resident Sharon Ragby described years-long diagnostic delays and steep treatment costs. Ragby said some drugs have "cost $25,000" per infusion and that her treatments since 2015 have totaled about $350,000, adding that many families without robust coverage face financial ruin. "People with rare diseases really need a place to go for advice and support," she said, urging passage of H46.
The Department of Health presented a draft markup that would shift many appointment powers to the commissioner of health, set staggered five-year terms, add vacancy and removal procedures, move web-page and administrative tasks to the agency, and convert several mandatory duties in the bill from "shall" to permissive language. "These changes are really getting to that point, making it functional, making it effective, and coordinating as closely as possible with existing programming," Jessica Shabbano, policy director at the Department of Health, told the committee.
Lawmakers pressed for clearer limits on removal authority — the draft allows appointing entities to remove members "for any reason," language several senators said should be tightened to protect vulnerable participants with lived experience. Committee members also asked for firmer text specifying that the department's support be administrative in scope (meeting notices, minutes, scheduling, and technical assistance) rather than open-ended legal representation.
The bill's legislative counsel presented a separate strike-all amendment that adds a new section directing the Department of Health to develop, by Jan. 1, 2027, clinical guidance and training for primary care on long COVID and to report by Feb. 1 on long-term disability supports. Committee members debated whether long COVID belongs in the RDAC statute or should be handled separately; staff said the issue will be revisited during markup.
The committee agreed to retain the department's recommendations highlighted for further markup, to refine language on member removal and department assistance, and to return to H46 with an opportunity to adopt amendments. Witnesses and staff were asked to submit updated proposed language and supporting materials before the next session.
