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Patients, advocates urge committee to establish Rare Disease Advisory Council (H46)
Summary
Dozens of patients, caregivers and advocacy groups testified in favor of H46, a bill to create a Rare Disease Advisory Council in Vermont, citing long diagnostic delays, gaps in coordinated care, and the need for a formal advisory body to connect patients, providers and policymakers.
Dozens of patients, caregivers and advocacy‑group representatives testified before the House Committee on Human Services in support of H46, a bill to establish a Rare Disease Advisory Council in Vermont.
Sarah (last name not specified), speaking as a patient from Glover who described a variation of skeletal dysplasia, told the committee: “I am here as a patient, with a rare disorder.” She urged lawmakers to create a body that would bring lived experience into state health policy and improve access to expertise for patients with conditions that are often unfamiliar to local providers.
Katie Pockett of Essex — who identified herself as both a patient and an advocate — described living with Ehlers‑Danlos, Sjögren’s syndrome and fibromyalgia and said the advisory council would give patients “a voice in state government and inform state leaders about these challenges to create potential solutions.”
Several other witnesses recounted long diagnostic journeys and gaps in care. Nancy Luke, who said she was diagnosed with amyotrophic lateral sclerosis (ALS) in 2022, described lengthy delays to diagnosis and the disease’s progression. “Living with ALS or any terminal disease is scary,” she said, and added that access to coordinated information and specialized clinics matters when appointments are scheduled months in advance.
Karen Hammer Williamson, care services manager for the ALS Association in Vermont, told the committee that rapid communication and centralized outreach are critical for people with rare diseases, citing recent health‑system changes that briefly disrupted specialty clinic appointments for some patients. She said the council could help create a reliable list and contact system to reach affected patients quickly.
Why it matters: witnesses said many rare conditions require multidisciplinary specialty care, long lead times for appointments and coordinated services. Supporters argued that a council would help the Vermont Department of Health and other agencies better understand patient needs, coordinate research and protect recently built research and clinical relationships.
Committee response and next steps
Representative Theresa Wood, chair of the committee, thanked witnesses and told them the committee would take up H46 after crossover. “I want you to leave here knowing that you, made a difference and that, we will work on getting H46 passed out of the House and moved over to the Senate,” she said. Committee staff said they would circulate a toolkit and additional background materials from neighboring states’ councils to inform drafting and implementation.
Ending
Witnesses expressed appreciation for the committee’s time; several asked for continued engagement during the drafting process. No formal vote on H46 was recorded in the transcript segment reviewed.
