Florida Senate - 2024 COMMITTEE AMENDMENT
Bill No. SB 186
Ì357376JÎ357376
LEGISLATIVE ACTION
Senate . House
Comm: RCS .
12/05/2023 .
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The Committee on Health Policy (Brodeur) recommended the
following:
1 Senate Amendment (with title amendment)
2
3 Delete everything after the enacting clause
4 and insert:
5 Section 1. This act may be cited as the “Justo R. Cortes
6 Progressive Supranuclear Palsy Act.”
7 Section 2. Progressive supranuclear palsy and other
8 neurodegenerative diseases policy committee.—
9 (1) The State Surgeon General shall establish a progressive
10 supranuclear palsy and other neurodegenerative diseases policy
11 committee, a committee as defined in s. 20.03. The Department of
12 Health shall provide staff and administrative support to the
13 committee for purposes of carrying out its duties and
14 responsibilities.
15 (2) The committee shall do all of the following:
16 (a) Identify the aggregate number of people in the state
17 diagnosed with progressive supranuclear palsy or other
18 neurodegenerative diseases annually.
19 (b) Identify how data is collected regarding diagnoses of
20 progressive supranuclear palsy or other neurodegenerative
21 diseases and adverse health outcomes associated with such
22 conditions.
23 (c) Identify how progressive supranuclear palsy and other
24 neurodegenerative diseases impact the lives of people in the
25 state.
26 (d) Identify the standard of care for the surveillance,
27 detection, and treatment of progressive supranuclear palsy and
28 other neurodegenerative diseases.
29 (e) Identify emerging treatments, therapies, and research
30 relating to progressive supranuclear palsy and other
31 neurodegenerative diseases.
32 (f) Develop a risk surveillance system to help health care
33 providers identify patients who may be at a higher risk of
34 developing progressive supranuclear palsy and other
35 neurodegenerative diseases.
36 (g) Develop policy recommendations to help improve patient
37 awareness of progressive supranuclear palsy and other
38 neurodegenerative diseases.
39 (h) Develop policy recommendations to help improve
40 surveillance and detection of patients who may be at a higher
41 risk of being diagnosed with progressive supranuclear palsy and
42 other neurodegenerative diseases in licensed health care
43 facilities, including hospitals, nursing homes, assisted living
44 facilities, residential treatment facilities, and ambulatory
45 surgical centers.
46 (i) Develop policy recommendations relating to guidelines
47 that affect the standard of care for patients with progressive
48 supranuclear palsy or other neurodegenerative diseases.
49 (j) Develop policy recommendations relating to providing
50 patients and their families with written notice of increased
51 risks of being diagnosed with progressive supranuclear palsy and
52 other neurodegenerative diseases.
53 (3) The committee shall be composed of 20 members,
54 including the State Surgeon General. Members of the committee
55 must be appointed by September 1, 2024.
56 (a) The State Surgeon General shall appoint health care
57 providers, family members or caretakers of patients who have
58 been diagnosed with progressive supranuclear palsy and other
59 neurodegenerative diseases, advocates, and other interested
60 parties and associations.
61 (b) The President of the Senate and the Speaker of the
62 House of Representatives shall each appoint two members to the
63 committee.
64 (c) Members of the committee shall serve without
65 compensation and for the entirety of the committee’s existence.
66 (d) The State Surgeon General shall appoint the chair of
67 the committee.
68 (e) The chair of the committee may create subcommittees to
69 help conduct research, schedule speakers on important subjects,
70 and draft reports and policy recommendations.
71 (f) Meetings of the committee shall be held through
72 teleconference or other electronic means. The committee shall
73 meet for its initial meeting by October 1, 2024. Thereafter, the
74 committee may meet upon the call of the chair or upon the
75 request of a majority of its members. Notices for any scheduled
76 meetings of the committee must be published in advance on the
77 department’s website.
78 (4)(a) The State Surgeon General shall submit a progress
79 report detailing committee activities, as well as his or her
80 findings and recommendations, to the Governor, the President of
81 the Senate, and the Speaker of the House of Representatives by
82 January 4, 2025. The report must be made available on the
83 department’s website.
84 (b) The State Surgeon General shall submit a final report
85 detailing committee activities, as well as his or her findings
86 and recommendations, to the Governor, the President of the
87 Senate, and the Speaker of the House of Representatives by
88 January 4, 2026. The report must be made available on the
89 department’s website.
90 (5) The committee shall sunset July 1, 2026, and this
91 section is repealed on that date.
92 Section 3. This act shall take effect July 1, 2024.
93
94 ================= T I T L E A M E N D M E N T ================
95 And the title is amended as follows:
96 Delete everything before the enacting clause
97 and insert:
98 A bill to be entitled
99 An act relating to a progressive supranuclear palsy
100 and other neurodegenerative diseases policy committee;
101 providing a short title; requiring the State Surgeon
102 General to establish a progressive supranuclear palsy
103 and other neurodegenerative diseases policy committee;
104 requiring the Department of Health to provide staff
105 and administrative support to the committee; providing
106 for duties, membership, and meetings of the committee;
107 requiring the State Surgeon General to submit a
108 progress report and a final report by a specified date
109 to the Governor and the Legislature; requiring the
110 reports to be made available on the department’s
111 website; providing for the expiration of the
112 committee; providing an effective date.