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Advocates urge Rhode Island to create Rare Disease Advisory Council; sponsor seeks council structure within Department of Health
Summary
Supporters told the House Health and Human Services Committee that converting an office into a Rare Disease Advisory Council would be low-cost and provide diagnosis, treatment and policy guidance to families and clinicians across Rhode Island.
Representative Speaker Pro Tem Kennedy introduced House Bill 5,023 on Feb. 6, 2025, proposing to establish a Rare Disease Advisory Council within the Rhode Island Department of Health. Kennedy told the committee the bill previously passed the House in 2024 but did not clear the Senate, and his amendments would change the proposal from an office to a council and add stakeholder membership.
Kennedy said the council would likely meet quarterly and ‘‘we think we can do it without requiring a great amount of financial funding,’’ while remaining housed within the Department of Health. He told committee members he worked with the National Organization for Rare Disorders on the revisions and that the council would include representatives from biopharma, health plans, scientific communities and people affected by rare diseases.
Several advocates testified in favor. Leanne Hood, who described herself as a rare disease and disability patient advocate, said patients face obstacles to care including a lack of specialists and uneven insurance coverage for medications and compounding pharmacy products. Alexandra Lee, a Brown University medical student, described a family member with an ‘‘ultra rare’’ neurodevelopmental syndrome and urged lawmakers that ‘‘a rare disease advisory council would give these patients a voice.’’ Michael Vromenco cited national context including that ‘‘less than 10 percent of rare diseases have treatments’’ and testified that policy guidance from a council could help educate providers and improve access.
Why it matters: Supporters said the council would centralize information, advise policymakers about diagnostic and coverage gaps, and connect patients to care without creating a large ongoing staffing cost.
What the bill would change: Kennedy described the proposal as converting an envisioned office into a council, adding stakeholder seats (biopharma, health plan, affected individuals, scientific community) and scheduling recurring meetings (proposed quarterly). Funding was described in testimony as minimal; Kennedy said the revised structure aims to avoid creating a half-time Department of Health position.
No formal committee vote on the bill occurred at the hearing; the bill was included in a procedural motion to hold several measures for further study.
