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Bill

HB 1383

Pub. Rec./Experimental Treatments for Terminal Conditions and Life-threatening Rare Diseases

2026 Regular Session Introduced by Gallop Franklin

Establishes public records access and procedures for experimental treatments in terminal and rare disease cases, balancing patient access with medical safety oversight.

Died in Health Professions & Programs Subcommittee
#subjectindex #(adopted)
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Bill Summary · HB 1383

Legislative bill overview

HB 1383 appears to establish public records requirements and procedures related to experimental treatments for patients with terminal conditions and life-threatening rare diseases. The bill likely creates mechanisms for access to information about investigational therapies and potentially establishes a right-to-try framework or expanded access protocols. The specific mechanisms and scope require review of the full bill text.

Why is this important

This addresses a significant tension in healthcare policy: patients with terminal or rare conditions often have no standard treatment options and may seek access to experimental drugs not yet approved by the FDA. The bill potentially affects how Florida balances patient autonomy, transparency, medical safety standards, and pharmaceutical regulation—issues that impact vulnerable populations with limited medical alternatives.

Potential points of contention

  • Right-to-try vs. safety oversight: Expanding access to unproven treatments raises questions about protecting patients from ineffective or harmful experimental drugs while respecting patient autonomy in end-of-life situations
  • Public records disclosure: Mandating public records on experimental treatment outcomes could create privacy concerns for patients while also potentially affecting pharmaceutical companies' proprietary clinical data
  • Definition scope: What constitutes "life-threatening rare diseases" and "experimental treatments" will significantly impact how broadly this applies and which patients and drugs are affected

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

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