Panel hears H46 to create Vermont rare-disease advisory council

Committee Chair Sam opened the session by taking a straw poll on which bills the committee would consider; Representative Anne Donahue then introduced H46, a full bill to establish a Vermont Rare Disease Advisory Council.

The bill would create a statewide council (often called an RDAC in other states) to gather public input, consult experts, publish a list of available resources for rare diseases and provide annual reports and testimony on pending legislation affecting Vermont’s rare-disease community. Representative Anne Donahue said many other states have similar councils and that testimony from families and advocates in multiple sessions has driven the proposal.

Committee members and witnesses emphasized the role of caregivers and people with lived experience. Committee member Dan said a clearinghouse of nationwide information would be helpful for families caring for people with rare diseases and recounted personal experience caring for a relative who died from a rare illness. Representative Anne Donahue and others noted that caregivers and people with lived experience are included among proposed members, and the bill includes language allowing one person to represent multiple listed stakeholder categories when appropriate to avoid an unwieldy council roster.

Members discussed whether some rare diseases might receive more attention than others and whether the council would favor higher-profile conditions. Donahue said the intent is that people with different rare diseases often feel “in it together,” and that testimony last year suggested individuals tended to speak for broader common needs rather than single diagnoses. The National Organization for Rare Disorders (NORD) was mentioned as an existing national resource used by advocates.

Speakers raised access-to-services issues for people who are not Medicaid eligible: committee members noted that Medicaid eligibility can materially affect access to long-term care and supports, and that young people with rare conditions who are not Medicaid-eligible may lack supports available to others. Donahue said the council could help identify gaps and recommend ways physicians, the Department of Health and other agencies can connect patients to resources.

No formal vote on H46 was recorded in the transcript. Committee members generally expressed support for taking up the bill for committee work, and Donahue encouraged further testimony to refine membership and duties.

The committee moved on to other bill introductions after the discussion; no appropriation, schedule, or final language was adopted during the session.