FL
Florida House Bill H7085

Florida 2024 Regular Session

Florida House Bill H7085 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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14+A bill to be entitled 1
1515 An act relating to sickle cell disease; creating s. 2
1616 381.814, F.S.; creating the Sickle Cell Disease 3
1717 Research and Treatment Grant Program within the 4
1818 Department of Health for a specified purpose; 5
1919 specifying the types of projects that are eligible for 6
2020 grant funding; authorizing the department to adopt 7
2121 rules; providing for the carryforward for a limited 8
2222 period of any unexpended balance of an appropriation 9
2323 for the program; amending s. 383.147, F.S.; revising 10
2424 sickle cell disease and sickle cell trait screening 11
2525 requirements; requiring screening providers to notify 12
2626 a newborn's parent or guardian, rather than the 13
2727 newborn's primary care physician, of certain 14
2828 information; authorizing certain persons other than 15
2929 newborns who have been identified as having sickle 16
3030 cell disease or carrying a sickle cell trait to choose 17
3131 to be included in the registry; providing an effective 18
3232 date. 19
3333 20
3434 Be It Enacted by the Legislature of the State of Florida: 21
3535 22
3636 Section 1. Section 381.814, Florida Statutes, is created 23
3737 to read: 24
3838 381.814 Sickle Cell Disease Research and Treatment Grant 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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5151 Program.—The Sickle Cell Disease Research and Treatment Grant 26
5252 Program is created within the Department of Health. 27
5353 (1) As used in this section, the term: 28
5454 (a) "Center of excellence" means a health care facility 29
5555 dedicated to the treatment of patients with sickle cell disease 30
5656 which provides evidence -based, comprehensive, patient -centered 31
5757 coordinated care. 32
5858 (b) "Department" means the Department of Health. 33
5959 (c) "Health care practitioner" has the same meaning as 34
6060 provided in s. 456.001. 35
6161 (d) "Program" means the Sickle Cell Disease Research and 36
6262 Treatment Grant Program. 37
6363 (e) "Sickle cell disease" means the gro up of hereditary 38
6464 blood disorders caused by an abnormal type of hemoglobin 39
6565 resulting in malformed red blood cells with impaired function. 40
6666 The term includes both symptomatic manifestations of sickle cell 41
6767 disease and asymptomatic sickle cell trait. 42
6868 (2) The purpose of the program is to fund projects that 43
6969 improve the quality and accessibility of health care services 44
7070 available for persons living with sickle cell disease in this 45
7171 state as well as to advance the collection and analysis of 46
7272 comprehensive data to sup port research of sickle cell disease. 47
7373 The long-term goals of the program are to: 48
7474 (a) Improve the health outcomes and quality of life for 49
7575 Floridians with sickle cell disease. 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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8888 (b) Expand access to high -quality, specialized care for 51
8989 sickle cell disease. 52
9090 (c) Improve awareness and understanding among health care 53
9191 practitioners of current best practices for the treatment and 54
9292 management of sickle cell disease. 55
9393 (3) Funds appropriated to the program shall be awarded by 56
9494 the Office of Minority Health and Health Equity, within the 57
9595 department, to community -based sickle cell disease medical 58
9696 treatment and research centers operating in this state. 59
9797 (4) The Office of Minority Health and Health Equity shall 60
9898 award grants under the program to community -based sickle cell 61
9999 disease medical treatment and research centers to fund projects 62
100100 specific to sickle cell disease in the following project areas. 63
101101 (a) Sickle cell disease workforce development and 64
102102 education.—Such projects shall include, but need not be limited 65
103103 to, facility-based education programs, continuing education 66
104104 curriculum development, and outreach and education activities 67
105105 with the local health care practitioner community. Workforce 68
106106 development and education projects must be based on current 69
107107 evidence-based clinical practice guidelines for sickle cell 70
108108 disease. 71
109109 (b) Sickle Cell Disease Treatment Centers of Excellence. —72
110110 Such projects shall include, but need not be limited to, 73
111111 operational support for existing centers of excellence, facility 74
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120120 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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124124 enhancement of existing centers of excellence, and the 75
125125 establishment of new centers of excellence. 76
126126 (5) The department shall: 77
127127 (a) By July 15, 2024, publicize the availability of funds, 78
128128 establish an application process for submitting a grant 79
129129 proposal, and initiate a call for applicati ons. 80
130130 (b) Develop uniform data reporting requirements for the 81
131131 purpose of evaluating the performance of the grant recipients 82
132132 and demonstrating improved health outcomes. 83
133133 (c) Develop a monitoring process to evaluate progress 84
134134 towards meeting grant objective s. 85
135135 (6) The department shall submit an annual report to the 86
136136 Governor, the President of the Senate, the Speaker of the House 87
137137 of Representatives, and the State Surgeon General by March 1 and 88
138138 publish the report on the department's website. The report shall 89
139139 include the status and progress for each project supported by 90
140140 the program during the previous calendar year. The report shall 91
141141 include, at a minimum, recommendations for improving the program 92
142142 and the following components for each project supported by the 93
143143 program: 94
144144 (a) A summary of the project and the project outcomes or 95
145145 expected project outcomes. 96
146146 (b) The status of the project, including whether it is 97
147147 completed or the estimated date of completion. 98
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156156 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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160160 (c) The amount of the grant awarded and the estimated or 99
161161 actual cost of the project. 100
162162 (d) The source and amount of any federal, state, or local 101
163163 government grants or donations or private grants or donations 102
164164 funding the project. 103
165165 (e) A list of all entities involved in the project. 104
166166 (7) The department may adopt r ules as necessary to 105
167167 implement the provisions of this section. 106
168168 (8) The recipient of a grant awarded under the program may 107
169169 not use more than 5 percent of grant funds for administrative 108
170170 expenses. Notwithstanding s. 216.301 and pursuant to s. 216.351, 109
171171 the balance of any appropriation from the General Revenue Fund 110
172172 for the program which is not disbursed but which is obligated 111
173173 pursuant to contract or committed to be expended by June 30 of 112
174174 the fiscal year in which the funds are appropriated may be 113
175175 carried forward for up to 5 years after the effective date of 114
176176 the original appropriation. 115
177177 Section 2. Section 383.147, Florida Statutes, is amended 116
178178 to read: 117
179179 383.147 Newborn and infant screenings for Sickle cell 118
180180 disease and sickle cell trait hemoglobin variants; registry.— 119
181181 (1) If a screening provider detects that a newborn or an 120
182182 infant, as those terms are defined in s. 383.145(2) , is 121
183183 identified as having sickle cell disease or sickle cell trait 122
184184 through the newborn screening program as described in s. 383.14, 123
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193193 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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197197 the department carrying a sickle cell hemoglobin variant, it 124
198198 must: 125
199199 (a) Notify the parent or guardian of the newborn and 126
200200 provide information regarding the availability and benefits of 127
201201 genetic counseling primary care physician of the newborn or 128
202202 infant and 129
203203 (b) Submit the results of such screening to the Department 130
204204 of Health for inclusion in the sickle cell registry established 131
205205 under paragraph (2)(a). The primary care physician must provide 132
206206 to the parent or guardian of the newborn or infant information 133
207207 regarding the availability and benefits of genetic counseling. 134
208208 (2)(a) The Department of Health shall contract with a 135
209209 community-based sickle cell disease medical treatment and 136
210210 research center to establish and maintain a registry for 137
211211 individuals newborns and infants who are identified as carrying 138
212212 a sickle cell disease or sickle cell trait hemoglobin variant. 139
213213 The sickle cell registry must track sickle cell disease outcome 140
214214 measures, except as provided in paragraph (1)(b) . A parent or 141
215215 guardian of a newborn or an infan t in the registry may request 142
216216 to have his or her child removed from the registry by submitting 143
217217 a form prescribed by the department by rule. 144
218218 (b) In addition to newborns identified and included in the 145
219219 registry under subsection (1), other persons living in this 146
220220 state who have been identified with sickle cell disease or 147
221221 sickle cell trait may choose to be included in the registry by 148
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230230 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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234234 providing the department with notification as prescribed by 149
235235 rule. 150
236236 (c)(b) The Department of Health shall also establish a 151
237237 system to ensure that the community -based sickle cell disease 152
238238 medical treatment and research center notifies the parent or 153
239239 guardian of a child who has been included in the registry that a 154
240240 follow-up consultation with a physician is recommended. Such 155
241241 notice must be provided to the parent or guardian of such child 156
242242 at least once during early adolescence and once during late 157
243243 adolescence. The department shall make every reasonable effort 158
244244 to notify persons included in the registry who are 18 years of 159
245245 age that they may request to be removed from the registry by 160
246246 submitting a form prescribed by the department by rule. The 161
247247 department shall also provide to such persons information 162
248248 regarding available educational services, genetic counseling, 163
249249 and other beneficial resources. 164
250250 (3) The Department of Health shall adopt rules to 165
251251 implement this section. 166
252252 Section 3. This act shall take effect upon becoming law. 167