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Bill

SB 5864

Establishing a point of contact for any person diagnosed with a rare disease.

2023-2024 Regular Session Introduced by Phil Fortunato

Washington establishes a single point of contact for rare disease patients to improve access to medical guidance, treatment information, and support resources throughout the state.

Public hearing in the Senate Committee on Ways & Means at 9:00 AM.
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Bill Summary · SB 5864

Legislative bill overview

SB 5864 requires Washington State to establish a designated point of contact for individuals diagnosed with rare diseases to help navigate medical care, treatment options, and support resources. The bill aims to centralize information and guidance for patients dealing with conditions that affect relatively small populations and are often difficult to diagnose or treat.

Why is this important

Rare disease patients typically face significant barriers including delayed diagnoses, limited specialist availability, and difficulty accessing appropriate treatments or clinical trials. A dedicated point of contact could reduce patient isolation, improve care coordination, and help individuals connect with existing support networks and research opportunities more efficiently.

Potential points of contention

  • Funding and implementation costs: The bill was referred to Ways & Means, suggesting fiscal impact concerns; unclear who bears costs for staffing and maintaining this contact center
  • Scope and feasibility: Defining which conditions qualify as "rare" and ensuring a single contact point can adequately serve thousands of distinct rare diseases with different needs
  • Coordination with existing systems: Potential duplication with National Organization for Rare Disorders (NORD), patient advocacy groups, and existing state health department resources already providing similar guidance

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

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