Get Full Government Meeting Transcripts, Videos, & Alerts Forever!
Get email alerts on the Rare Disease Advisory Council topic
No spam. Unsubscribe anytime.
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 and rules, consult with experts and develop policy recommendations including newborn screening, and draft reports to committees” all within four meetings per year. She said those tasks require “a high level of policy, medical, and clinical expertise” and that the department can provide administrative and legal guidance (scheduling, open-meeting advice, web hosting, meeting space) but cannot perform the substantive research, policy or legal work on the council’s behalf.
Dougherty recommended changes to H.46 to make the list of activities optional (change “shall” to “may”) so the council can set a realistic pace and identify resource needs. She also told the committee that the department already hosts a Newborn Screening Advisory Committee with interdisciplinary membership (laboratory, hospitals, specialty clinicians, family representatives and payers) that advises the state newborn screening program on diseases to add and Vermont-specific testing logistics.
Committee members acknowledged that some items in the bill — such as broad health care affordability goals — overlap with other existing efforts and could be narrowed. Legislators and department staff agreed to continue drafting work that would pare back mandatory deliverables, cite the newborn screening advisory body where appropriate, and allow the proposed council to articulate its own priorities and resource needs.
No formal vote was taken. The department said it will provide written suggestions to the committee and work with the bill sponsors on revised language that reduces mandatory tasks and clarifies the department’s administrative role.
