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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 the treatment and care of adult 2
patients with sickle cell disease; creating s. 3
381.817, F.S.; providing definitions; creating the 4
Sickle Cell Disease Task Force adjunct to the 5
Department of Health; providing a purpose; providing 6
for membership, meetings, and duties of the task 7
force; requiring the task force to submit a report to 8
the Governor and Legislature by a specified date; 9
providing for future expiration; creating s. 381.819, 10
F.S.; requiring the department, in consultation with 11
the task force, to develop and implement comprehensive 12
training and continuing education requirements for 13
certain health care providers; authorizing the 14
department to adopt rules; amending s. 381.981, F.S.; 15
requiring the Florida Public Health Institute, Inc., 16
in consultation with the department, to include sickle 17
cell disease as part of its health awareness 18
campaigns; providing an effective date. 19
20
Be It Enacted by the Legislature of the State of Florida: 21
22
Section 1. Section 381.817, Florida Statutes, is created 23
to read: 24
381.817 Sickle Cell Disease Task Force. — 25
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(1) DEFINITIONS.—As used in this section, the term: 26
(a) "Department" means the Department of Hea lth. 27
(b) "Task force" means the Sickle Cell Disease Task Force 28
created under this section. 29
(2) CREATION AND PURPOSE. —The Sickle Cell Disease Task 30
Force, a task force as defined in s. 20.03(8), is created 31
adjunct to the department for the purpose of pro viding 32
recommendations for improving the quality of treatment and care 33
provided to adult patients diagnosed with sickle cell disease 34
and for educating and training health care providers who treat, 35
or participate in the treatment of, such patients regarding the 36
best practices and guidelines for such treatment. The department 37
shall provide staff and administrative support for the task 38
force. 39
(3)(a) MEMBERSHIP.—The task force shall consist of 18 40
members, as follows: 41
1. The State Surgeon General or his or h er designee. 42
2. The Secretary of Health Care Administration or his or 43
her designee. 44
3. Three county health department directors, one of whom 45
represents a county with a large minority population, one of 46
whom represents a rural county, and one of whom re presents a 47
large county, appointed by the State Surgeon General. 48
4. One emergency room physician, one primary care 49
physician, one hematologist, one registered nurse or advanced 50
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practice registered nurse, one physician assistant, and one 51
pharmacist who treats, or participates in the treatment of, 52
adult patients with sickle cell disease, appointed by the State 53
Surgeon General. 54
5. One representative from each of the following 55
organizations, appointed by the Governor: 56
a. Florida Medical Association. 57
b. Sickle Cell Disease Association of Florida, Inc. 58
c. Florida Association of County Health Officers, Inc. 59
d. University of South Florida College of Public Health. 60
e. Florida Agricultural and Mechanical University 61
Institute of Public Health. 62
6. Two adult patients who have been diagnosed with sickle 63
cell disease, one appointed by the President of the Senate and 64
one appointed by the Speaker of the House of Representatives. 65
(b) The members of the task force must be appointed by 66
September 1, 2022. A vacancy on the task force shall be filled 67
in the same manner as the original appointment. The task force 68
shall elect a chair from among its members. 69
(c) Members of the task force shall serve without 70
compensation but are entitled to reimbursement for per diem and 71
travel expenses pursuant to s. 112.061. 72
(4) MEETINGS.— 73
(a) The task force shall convene its first meeting by 74
October 1, 2022. Thereafter, the task force shall meet as often 75
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as necessary to perform its duties at the call of the chair. 76
(b) Meetings may be conducted in person or by 77
teleconference or other electronic means. 78
(5) DUTIES.—The task force shall: 79
(a) Develop recommendations and identify strategies for 80
improving the continuum of care for adult patients with sickle 81
cell disease and promo ting the coordination among health care 82
providers, including, but not limited to, delineating the 83
elements of a comprehensive system of care and standardizing 84
protocols for the treatment of such patients. 85
(b) Identify the barriers to adult patients with sickle 86
cell disease in receiving adequate treatment and care, 87
including, but not limited to, inconsistent and inadequate 88
health insurance coverage, systemic racism, and a lack of 89
coordination among health care providers within the continuum of 90
care for such patients. 91
(c) Develop recommendations and identify strategies for 92
eliminating the barriers identified under paragraph (b). 93
(d) Develop recommendations for and identify the services 94
that are not covered by health insurance, but should be, for 95
adult patients with sickle cell disease, including, but not 96
limited to, urine screening for albuminuria, annual or biannual 97
dilated ophthalmological examination for sickle cell 98
retinopathy, pain specialist consultation and services, 99
evaluation and treatment for me ntal illness, and disease -100
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modifying therapies. 101
(e) Develop recommendations for improving the treatment 102
and care of adult patients with sickle cell disease for 103
prolonged acute pain, especially in hospital emergency 104
departments, including, but not limited to, managing pain for 105
such patients in accordance with the National Heart, Lung, and 106
Blood Institute's guidelines in the Evidence -Based Management of 107
Sickle Cell Disease: Expert Panel Report, 2014. 108
(f) Develop recommendations for standardizing the use of 109
individualized care plans by health care providers for each 110
adult patient with sickle cell disease, which would be included 111
in his or her medical records. 112
(g) Develop recommendations for training and educating 113
health care providers who care for and trea t, or participate in 114
the treatment and care of, adult patients with sickle cell 115
disease, including, but not limited to, comprehensive courses 116
covering systemic racism and its negative impact on the 117
accessibility of care, the management of pain in such pati ents, 118
and other diseases that disproportionately affect the minority 119
community. 120
(h) Develop recommendations and identify strategies for 121
providing support to adult patients with sickle cell disease 122
through the use of community -based organizations and case 123
managers in health care facilities. 124
(6) REPORT.—By October 1, 2023, the task force shall 125
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submit a report that includes its findings and recommendations 126
to the Governor, the President of the Senate, and the Speaker of 127
the House of Representatives. 128
(7) EXPIRATION.—This section expires October 1, 2024. 129
Section 2. Section 381.819, Florida Statutes, is created 130
to read: 131
381.819 Training and continuing education relating to 132
treatment and care of adults with sickle cell disease. —By 133
September 1, 2024, the Department of Health, in consultation 134
with the Sickle Cell Disease Task Force created under s. 135
381.817, shall develop and implement comprehensive training and 136
continuing education requirements for health care providers 137
relating to the treatment and care o f adults with sickle cell 138
disease. The department may adopt rules to implement this 139
section. 140
Section 3. Paragraph (v) is added to subsection (2) of 141
section 381.981, Florida Statutes, to read: 142
381.981 Health awareness campaigns. — 143
(2) The awareness c ampaigns shall include the provision of 144
educational information about preventing, detecting, treating, 145
and curing the following diseases or conditions. Additional 146
diseases and conditions that impact the public health may be 147
added by the board of directors of the Florida Public Health 148
Institute, Inc.; however, each of the following diseases or 149
conditions must be included in an awareness campaign during at 150
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least 1 month in any 24 -month period: 151
(v) Sickle cell disease. 152
Section 4. This act shall take effect July 1, 2022. 153