THE BILL ITSELF
HB 1383
Pub. Rec./Experimental Treatments for Terminal Conditions and Life-threatening Rare Diseases
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A bill to be entitled
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An act relating to public records; amending s.
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499.0295, F.S.; providing an exemption from public
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records requirements certain information contained in
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a public report published by the Department of Health
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relating to experimental treatment outcomes and safety
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signals; providing a statement of public necessity;
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providing a contingent effective date.
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Be It Enacted by the Legislature of the State of Florida:
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Section 1. Paragraph (c) of subsection (7) of section
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499.0295, Florida Statutes, as amended by HB 1381, 2026 Regular
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Session, is amended to read:
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499.0295 Experimental treatments for terminal conditions
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and life-threatening rare diseases.—
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(7)
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(c) The department shall annually publish a public report
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of experimental treatment outcomes and safety signals in the
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aggregate. The health information and proprietary pricing
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information contained in the report is confidential and exempt
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from s. 119.07(1) and s. 24(a), Art. I of the State
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Constitution.
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Section 2. The Legislature finds that it is a public
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necessity that the health information and proprietary pricing
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information contained in the annual public report of
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experimental treatment outcomes and safety signals under s.
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499.0295, Florida Statutes, be made confidential and exempt from
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s. 119.07(1), Florida Statutes, and s. 24(a), Article I of the
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State Constitution. The Legislature finds that the release of
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such information could harm patients with terminal conditions or
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life-threatening rare diseases by exposing extremely sensitive
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personal health data. The Legislature further finds that
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patients who pursue experimental treatments under the Promising
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Pathways Act have a strong expectation of privacy regarding
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their medical information, and that the potential harm resulting
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from disclosure of such information outweighs any public benefit
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that may be derived from its release.
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Section 3. This act shall take effect on the same date
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that HB 1381 or similar legislation takes effect, if such
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legislation is adopted in the same legislative session or an
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extension thereof and becomes law.