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Health department urges limiting expectations for proposed Rare Disease Advisory Council in H.46
Summary
The Vermont Department of Health told the committee that H.46’s current list of required deliverables is unrealistic for a volunteer-based advisory council; the department recommended changing mandatory duties to optional and cited an existing Newborn Screening Advisory Committee as a related body
Kelly Dougherty, deputy commissioner of the Vermont Department of Health, told the Legislative Oversight and Accountability Committee that while the department supports the intent of H.46 to give the rare disease community a formal advisory platform, the bill’s required deliverables exceed what a volunteer advisory council can reliably accomplish without dedicated staff or resources.
Dougherty said the bill requires the council to “convene and conduct public hearings, create a needs assessment, provide testimony on pending legislation…
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