FL
Florida House Bill H0115

Florida 2024 Regular Session

Florida House Bill H0115 Compare Versions

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1010 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
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1414 A bill to be entitled 1
1515 An act relating to a progressive supranuclear palsy 2
1616 and other neurodegenerative diseases policy workgroup; 3
17-providing a short title; creating s. 381.991, F.S.; 4
18-requiring the State Surgeon General to establish a 5
19-progressive supranuclear palsy and other 6
20-neurodegenerative diseases policy workgroup; providing 7
21-for duties, membership, and meetings of the workgroup; 8
22-requiring the State Surgeon General to submit annual 9
23-reports and a final report by a specified date to the 10
24-Governor and the Legislature; providing an effective 11
25-date. 12
17+providing a short title; creating s. 408.0622, F.S.; 4
18+requiring the Secretary of Health Care Administration, 5
19+in conjunction with the State Surgeon General, to 6
20+establish a progressive supranuclear palsy and other 7
21+neurodegenerative diseases policy workgroup; providing 8
22+for duties, membership, and meetings of the workgroup; 9
23+requiring the secretary to submit annual reports and a 10
24+final report by a specified date to the Governor and 11
25+the Legislature; providing an effective date. 12
2626 13
2727 Be It Enacted by the Legislature of the State of Florida: 14
2828 15
2929 Section 1. This act may be cited as the "Justo R. Cortes 16
3030 Progressive Supranuclear Palsy Act." 17
31- Section 2. Section 381.991, Florida Statutes, is created 18
31+ Section 2. Section 408.0622, Florida Statutes, is created 18
3232 to read: 19
33- 381.991 Progressive supranuclear palsy and other 20
33+ 408.0622 Progressive supranuclear palsy and other 20
3434 neurodegenerative diseases policy workgroup. — 21
35- (1) The State Surgeon General shall establish a 22
36-progressive supranucl ear palsy and other neurodegenerative 23
37-diseases policy workgroup. 24
38- (2) The workgroup shall: 25
35+ (1) The Secretary of Health Care Administration, in 22
36+conjunction with the State Surgeon General, shall establish a 23
37+progressive supranuclear palsy and other neurodegenerative 24
38+diseases policy workgroup. 25
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4747 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
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51- (a) Identify the aggregate number of people in the state 26
52-diagnosed with progressive supranuclear palsy and other 27
53-neurodegenerative diseases annually. 28
54- (b) Identify how data is collected regarding diagnoses of 29
55-progressive supranuclear palsy and other neurodegenerative 30
56-diseases and adverse health outcomes associated with such 31
57-conditions. 32
58- (c) Identify how progressive supranuclear palsy and other 33
59-neurodegenerative diseases impact the lives of people in the 34
60-state. 35
61- (d) Identify the standard of care for the surveillance, 36
62-detection, and treatment of progressive supranuclear palsy and 37
63-other neurodegenerative diseases. 38
64- (e) Identify emerging treatments, therapies, and r esearch 39
65-relating to progressive supranuclear palsy and other 40
66-neurodegenerative diseases. 41
67- (f) Develop a risk surveillance system to help health care 42
68-providers identify patients who may be at a higher risk of 43
69-developing progressive supranuclear palsy and o ther 44
70-neurodegenerative diseases. 45
71- (g) Develop policy recommendations to help improve patient 46
72-awareness of progressive supranuclear palsy and other 47
73-neurodegenerative diseases. 48
74- (h) Develop policy recommendations to help improve 49
75-surveillance and detection of patients who may be at a higher 50
51+ (2) The workgroup shall: 26
52+ (a) Identify the aggregate number of peo ple in the state 27
53+diagnosed with progressive supranuclear palsy and other 28
54+neurodegenerative diseases annually. 29
55+ (b) Identify how data is collected regarding diagnoses of 30
56+progressive supranuclear palsy and other neurodegenerative 31
57+diseases and adverse health outcomes associated with such 32
58+conditions. 33
59+ (c) Identify how progressive supranuclear palsy and other 34
60+neurodegenerative diseases impact the lives of people in the 35
61+state. 36
62+ (d) Identify the standard of care for the surveillance, 37
63+detection, and treatment of progressive supranuclear palsy and 38
64+other neurodegenerative diseases. 39
65+ (e) Identify emerging treatments, therapies, and research 40
66+relating to progressive supranuclear palsy and other 41
67+neurodegenerative diseases. 42
68+ (f) Develop a risk surveillance system to h elp health care 43
69+providers identify patients who may be at a higher risk of 44
70+developing progressive supranuclear palsy and other 45
71+neurodegenerative diseases. 46
72+ (g) Develop policy recommendations to help improve patient 47
73+awareness of progressive supranuclear pa lsy and other 48
74+neurodegenerative diseases. 49
75+ (h) Develop policy recommendations to help improve 50
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8484 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
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88-risk of being diagnosed with progressive supranuclear palsy and 51
89-other neurodegenerative diseases in licensed health care 52
90-facilities, including hospitals, nursing homes, assisted living 53
91-facilities, residential treatment fa cilities, and ambulatory 54
92-surgical centers. 55
93- (i) Develop policy recommendations relating to guidelines 56
94-that affect the standard of care for patients with progressive 57
95-supranuclear palsy and other neurodegenerative diseases. 58
96- (j) Develop policy recommendations relating to providing 59
97-patients and their families with written notice of increased 60
98-risks of being diagnosed with progressive supranuclear palsy and 61
99-other neurodegenerative diseases. 62
100- (3)(a) The workgroup shall be compos ed of health care 63
101-providers, family members or caretakers of patients who have 64
102-been diagnosed with progressive supranuclear palsy and other 65
103-neurodegenerative diseases, advocates, and other interested 66
104-parties and associations. 67
105- (b) The President of the Sen ate and the Speaker of the 68
106-House of Representatives shall each appoint two members to the 69
107-workgroup. 70
108- (c) Members of the workgroup shall serve without 71
109-compensation. 72
110- (d) The State Surgeon General shall appoint the chair of 73
111-the workgroup. 74
112- (e) The chair of the workgroup may create subcommittees to 75
88+surveillance and detection of patients who may be at a higher 51
89+risk of being diagnosed with progressive supranuclear palsy and 52
90+other neurodegenerative diseases in licensed health care 53
91+facilities, including hospitals, nursing homes, assisted living 54
92+facilities, residential treatment facilities, and ambulatory 55
93+surgical centers. 56
94+ (i) Develop policy recommendations relating to guideli nes 57
95+that affect the standard of care for patients with progressive 58
96+supranuclear palsy and other neurodegenerative diseases. 59
97+ (j) Develop policy recommendations relating to providing 60
98+patients and their families with written notice of increased 61
99+risks of being diagnosed with progressive supranuclear palsy and 62
100+other neurodegenerative diseases. 63
101+ (3)(a) The workgroup shall be composed of health care 64
102+providers, family members or caretakers of patients who have 65
103+been diagnosed with progressive supranuclear palsy a nd other 66
104+neurodegenerative diseases, advocates, and other interested 67
105+parties and associations. 68
106+ (b) The President of the Senate and the Speaker of the 69
107+House of Representatives shall each appoint two members to the 70
108+workgroup. 71
109+ (c) Members of the workgroup shall serve without 72
110+compensation. 73
111+ (d) The State Surgeon General shall appoint the chair of 74
112+the workgroup. 75
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121121 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
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125-help conduct research, schedule speakers on important subjects, 76
126-and draft reports and policy recommendations. 77
127- (f) Meetings of the workgroup may be held through 78
128-teleconference or other electronic means. 79
129- (4)(a) The State Surgeon General shall submit an annual 80
130-report detailing his or her findings and providing 81
131-recommendations to the Governor, the President of the Senate, 82
132-and the Speaker of the House of Representatives. 83
133- (b) The State Surgeon General shall submi t a final report 84
134-detailing his or her findings and providing recommendations to 85
135-the Governor, the President of the Senate, and the Speaker of 86
136-the House of Representatives by January 4, 2026. 87
137- Section 3. This act shall take effect July 1, 2024. 88
125+ (e) The chair of the workgroup may create subcommittees to 76
126+help conduct research, schedule speakers on important subjects, 77
127+and draft reports and policy recommendations. 78
128+ (f) Meetings of the workgroup may be held through 79
129+teleconference or other electronic means. 80
130+ (4)(a) The Secretary of Health Care Administration shall 81
131+submit an annual report detailing his or her findings and 82
132+providing recommendat ions to the Governor, the President of the 83
133+Senate, and the Speaker of the House of Representatives. 84
134+ (b) The Secretary of Health Care Administration shall 85
135+submit a final report detailing his or her findings and 86
136+providing recommendations to the Governor, t he President of the 87
137+Senate, and the Speaker of the House of Representatives by 88
138+January 4, 2026. 89
139+ Section 3. This act shall take effect July 1, 2024. 90