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HB 1019

Public health; Oklahoma Rare Disease Advisory Council; purpose; appointment procedures; membership requirements; annual report; membership terms; vacancies; term; effective date.

2025 Regular Session Introduced by Carri Hicks and 1 co-sponsor

HB 1019 establishes Oklahoma's Rare Disease Advisory Council to advise state on rare disease policy, patient needs, and treatment access through structured membership and annual reporting requirements.

Referred to Appropriations and Budget Health Subcommittee
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Bill Summary · HB 1019

Legislative bill overview

HB 1019 establishes the Oklahoma Rare Disease Advisory Council, a new state body tasked with advising on rare disease policy and patient needs. The bill specifies the council's composition, appointment procedures, member term lengths, and requires annual reporting to state leadership.

Why is this important

Rare diseases affect millions of Americans but often receive limited research funding and policy attention due to their individual small patient populations. Creating a dedicated advisory council gives rare disease patients and advocates a formal voice in state health policy and can help identify systemic gaps in diagnosis, treatment access, and support services.

Potential points of contention

  • Funding and staffing costs: The bill's effectiveness depends on adequate state resources, but doesn't specify a budget, potentially creating unfunded mandates on state agencies
  • Council composition and representation: Balancing diverse rare disease interests among limited council seats could lead to disputes over whose conditions receive priority attention
  • Accountability and actual influence: Without enforcement mechanisms, the council's recommendations could be advisory-only with minimal practical impact on state policy or healthcare access

Compiled from official sources — confirm details with the bill’s official record.

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