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HB1383 • 2026

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

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

Privacy
Passed Legislature

This bill passed both chambers and reached final enrollment, even if later executive action is not shown here.

Sponsor
Franklin
Last action
2026-03-13
Official status
House - Died in Health Professions & Programs Subcommittee
Effective date
on the sam

Plain English Breakdown

The official source material does not provide specific details about the content or format of the annual report, only that certain information within it is exempt from public records requirements.

Experimental Treatments Report Confidentiality

This bill makes certain information about experimental treatments for serious illnesses private, so it's not part of public records.

What This Bill Does

  • Changes a law to keep health and pricing details from being shared as public records.

Who It Names or Affects

  • People who need experimental treatments for serious illnesses
  • The Department of Health

Terms To Know

Public records
Information and documents that the government must share with anyone who asks.
Confidential information
Details that are kept secret to protect privacy or other important reasons.

Limits and Unknowns

  • The bill only works if similar legislation, HB 1381, also passes and becomes law.
  • It does not specify how long the exemption from public records will last.

Bill History

  1. 2026-03-13 House

    • Died in Health Professions & Programs Subcommittee

  2. 2026-01-15 House

    • Referred to Health Professions & Programs Subcommittee • Referred to Government Operations Subcommittee • Referred to Health & Human Services Committee • Now in Health Professions & Programs Subcommittee

  3. 2026-01-13 House

    • 1st Reading (Original Filed Version)

  4. 2026-01-09 House

    • Filed

Official Summary Text

Pub. Rec./Experimental Treatments for Terminal Conditions and Life-threatening Rare Diseases; Provides exemption from public records certain information contained in public report published by DOH relating to experimental treatment outcomes & safety signals; provides statement of public necessity.

Current Bill Text

Read the full stored bill text
HB 1383 2026

CODING: Words stricken are deletions; words underlined are additions.
hb1383-00
Page 1 of 2
F L O R I D A H O U S E O F R E P R E S E N T A T I V E S

A bill to be entitled 1
An act relating to public records; amending s. 2
499.0295, F.S.; providing an exemption from public 3
records requirements certain information contained in 4
a public report published by the Department of Health 5
relating to experimental treatment outcomes and safety 6
signals; providing a statement of public necessity; 7
providing a contingent effective date. 8
9
Be It Enacted by the Legislature of the State of Florida: 10
11
Section 1. Paragraph (c) of subsection (7) of section 12
499.0295, Florida Statutes, as amended by HB 1381, 2026 Regular 13
Session, is amended to read: 14
499.0295 Experimental treatments for terminal conditions 15
and life-threatening rare diseases.— 16
(7) 17
(c) The department shall annually publish a public report 18
of experimental treatment outcomes and safety signals in the 19
aggregate. The health information and proprietary pricing 20
information contained in the report is confidential and exempt 21
from s. 119.07(1) and s. 24(a), Art. I of the State 22
Constitution. 23
Section 2. The Legislature finds that it is a public 24
necessity that the health information and proprietary pricing 25

HB 1383 2026

CODING: Words stricken are deletions; words underlined are additions.
hb1383-00
Page 2 of 2
F L O R I D A H O U S E O F R E P R E S E N T A T I V E S

information contained in the annual public report of 26
experimental treatment outcomes and safety signals under s. 27
499.0295, Florida Statutes, be made confidential and exempt from 28
s. 119.07(1), Florida Statutes, and s. 24(a), Article I of the 29
State Constitution. The Legislature finds that the release of 30
such information could harm patients with terminal conditions or 31
life-threatening rare diseases by exposing extremely sensitive 32
personal health data. The Legislature further finds that 33
patients who pursue experimental treatments under the Promising 34
Pathways Act have a strong expectation of privacy regarding 35
their medical information, and that the potential harm resulting 36
from disclosure of such information outweighs any public benefit 37
that may be derived from its release. 38
Section 3. This act shall take effect on the same date 39
that HB 1381 or similar legislation takes effect, if such 40
legislation is adopted in the same legislative session or an 41
extension thereof and becomes law. 42