Florida 2023 Regular Session

Florida House Bill H1481 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 sickle cell disease medications, 2
1616 treatment, and screening; creating s. 383.147, F.S.; 3
1717 requiring certain health care providers to notify 4
1818 primary care physicians of newborns and infants of 5
1919 certain screening results relating to sickle cell 6
2020 hemoglobin variants and to submit such results to the 7
2121 Department of Health for a specified purpose; 8
2222 requiring such physicians to provide certain 9
2323 information to certain parents and guardians; 10
2424 requiring the department to contract with a specified 11
2525 center to establish and maintain a sickle cell 12
2626 registry; providing the purpose of the registry; 13
2727 authorizing certain parents and guardians to request 14
2828 to have their children removed from the registry; 15
2929 providing duties of the department and the center; 16
3030 providing requirements for certain notification; 17
3131 requiring the department to adopt rules; creating s. 18
3232 409.91235, F.S.; requiring the Agency for Health Care 19
3333 Administration, in consultation with certain entities, 20
3434 to review sickle cell disease medications, treatments, 21
3535 and services for Medicaid recipients and develop a 22
3636 written report, post the report on its website, and 23
3737 submit a copy of the report to the Governor, the 24
3838 Legislature, and certain entities by a specified date 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 and every 2 years thereafter; providing requirements 26
5252 for the report; providing appropriations and 27
5353 authorizing positions; providing an effective date. 28
5454 29
5555 Be It Enacted by the Legislature of the State of Florida: 30
5656 31
5757 Section 1. Section 383.147, Florida Statutes, is created 32
5858 to read: 33
5959 383.147 Newborn and infant screenings for sickle cell 34
6060 hemoglobin variants; registry. — 35
6161 (1) If a screening provider detects that a newborn or 36
6262 infant, as those terms are defined in s. 383.145(2), is carrying 37
6363 a sickle cell hemoglobin variant, it must notify the primary 38
6464 care physician of the newborn or infant and submit the results 39
6565 of such screening to the Department of Health for inclusion in 40
6666 the sickle cell registry established under paragraph (2)(a). The 41
6767 primary care physician must provide to the parent or guardian of 42
6868 the newborn or infant information regarding the availability and 43
6969 benefits of genetic counseling. 44
7070 (2)(a) The Department of Health shall contract with a 45
7171 community-based sickle cell disease medical treatment and 46
7272 research center to establish and maintain a registry for 47
7373 newborns and infants who are identified as carrying a sickle 48
7474 cell hemoglobin variant. The sickle cell registry must track 49
7575 sickle cell disease outcome measures. A parent or guardian of a 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 newborn or infant may request to have his or her child removed 51
8989 from the registry by submitting a form prescribed by the 52
9090 department by rule. 53
9191 (b) The Department of Health shall also establish a system 54
9292 to ensure that the community -based sickle cell disease medical 55
9393 treatment and research center notifies the parent or guardian of 56
9494 a child who has been included in the registry that a followup 57
9595 consultation with a physician is recommended. Such notice must 58
9696 be provided to the parent or guardian of such child at least 59
9797 once during early adolescence and once during late adolescence. 60
9898 The department shall make every reasonable effort to notify 61
9999 persons who are 18 years of age and who have been included in 62
100100 the registry that they may request to be removed from the 63
101101 registry by submitting a form prescribed by the department by 64
102102 rule. The department shall also provide to such persons 65
103103 information regarding available educational services, genetic 66
104104 counseling, and other beneficial resources. 67
105105 (3) The Department of Health shall adopt rules to 68
106106 implement this section. 69
107107 Section 2. Section 409.91235, Flor ida Statutes, is created 70
108108 to read: 71
109109 409.91235 Agency review and report on medications, 72
110110 treatments, and services for sickle cell disease. — 73
111111 (1) The Agency for Health Care Administration, in 74
112112 consultation with the Florida Medical Schools Quality Network 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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125125 and a dedicated sickle cell disease medical treatment and 76
126126 research center that maintains a sickle cell patient database 77
127127 and tracks sickle cell disease outcome measures, shall, every 2 78
128128 years: 79
129129 (a) Conduct a review to determine whether the available 80
130130 covered medications, treatments, and services for sickle cell 81
131131 disease are adequate to meet the needs of Medicaid recipients 82
132132 diagnosed with such disease and whether the agency should seek 83
133133 to add additional medications, treatments, or services for 84
134134 better outcomes. 85
135135 (b)1. Develop a written report that details the review 86
136136 findings. 87
137137 2. By November 1, 2024, and every other year thereafter, 88
138138 post the report on the agency's website. 89
139139 3. Submit a copy of the report to the Governor, the 90
140140 President of the Senate, the Speaker of the House of 91
141141 Representatives, the Department of Health Office of Minority 92
142142 Health and Health Equity, and the Rare Disease Advisory Council. 93
143143 (2)(a) The report must be based on the data collected from 94
144144 the prior 2 years and must include any recommendations for 95
145145 improvements in the delivery of and access to medications, 96
146146 treatments, or services for Medicaid recipients diagnosed with 97
147147 sickle cell disease. 98
148148 (b) The report must provide detailed information on 99
149149 Medicaid recipients diagnosed with sickle cell disease, 100
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158158 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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162162 including: 101
163163 1. The total number of Medicaid recipients diagnosed with 102
164164 sickle cell disease. 103
165165 2. The age and population demographics of the Medicaid 104
166166 recipients diagnosed with sickle cell disease. 105
167167 3. The health care utilization patterns and total 106
168168 expenditures, both pharmaceutical and medical, for services 107
169169 provided by Medicaid for all Medicaid recipients diagnosed with 108
170170 sickle cell disease. 109
171171 4. The number of Medicaid recipients diagnosed with sickle 110
172172 cell disease within the general sickle cell patient popul ation 111
173173 who have experienced two or more emergency room visits or two or 112
174174 more hospital inpatient admissions in a 12 -month period, 113
175175 including length of stay, and the expenditures, both 114
176176 pharmaceutical and medical, for those Medicaid recipients. 115
177177 5. The number of clinical treatment programs available for 116
178178 the care of Medicaid recipients diagnosed with sickle cell 117
179179 disease which are specifically designed or certified to provide 118
180180 health care coordination and health care access for individuals 119
181181 diagnosed with sickle ce ll disease and the number of those 120
182182 clinical treatment programs, per region, with which managed care 121
183183 plans have contracted. 122
184184 6. An assessment of the agency's existing payment 123
185185 methodologies for approved treatments or medications for the 124
186186 treatment of sickle cell disease in the inpatient setting and 125
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195195 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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199199 whether such payment methodologies result in barriers to access. 126
200200 If barriers to access are identified, an assessment of whether 127
201201 such methodologies may be modified or improved through the 128
202202 adoption of new or addition al policies. 129
203203 Section 3. For the 2023-2024 fiscal year, the sum of 130
204204 $250,000 in nonrecurring funds from the General Revenue Fund is 131
205-appropriated to the Agency for Health Care Administration for 132
206-the purpose of implementing this act. 133
207- Section 4. For the 2023-2024 fiscal year, five full -time 134
208-equivalent positions with associated salary rate of 254,408 are 135
209-authorized and the sums of $1,060,804 in recurring funds and 136
210-$21,355 in nonrecurring funds from the General Revenue Fund are 137
211-appropriated to the Department of Health for the purpose of 138
212-implementing this act. 139
213- Section 5. This act shall take effect July 1, 2023. 140
205+appropriated for the Agency for Health Care Administration to 132
206+conduct a review and develop a written report which identifi es 133
207+the total number of Medicaid recipients diagnosed with sickle 134
208+cell disease. The agency shall conduct the review and develop 135
209+the written report in consultation with the Florida Medical 136
210+Schools Quality Network and a dedicated sickle cell disease 137
211+medical treatment and research center that maintains a sickle 138
212+cell patient database and tracks sickle cell disease outcome 139
213+measures. The agency shall identify Medicaid recipients 140
214+diagnosed with sickle cell disease within the general sickle 141
215+cell patient population w ho have experienced two or more 142
216+emergency room visits or two or more hospital inpatient 143
217+admissions in a 12-month period. For both of those populations, 144
218+the agency shall provide detailed information including age and 145
219+population demographics, health care uti lization patterns and 146
220+expenditures for all pharmaceutical and medical services 147
221+provided, and the number of clinical treatment programs 148
222+available which are specifically designed or certified to 149
223+provide health care coordination and health care access for 150
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232+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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236+individuals diagnosed with sickle cell disease and the number of 151
237+those clinical treatment programs available and contracted with 152
238+managed care plans for the care of Medicaid recipients diagnosed 153
239+with sickle cell disease. The agency shall submit the report to 154
240+the Governor, the President of the Senate, the Speaker of the 155
241+House of Representatives, the Department of Health Office of 156
242+Minority Health and Health Equity, and the Rare Disease Advisory 157
243+Council by November 1, 2024. 158
244+ Section 4. For the 2023-2024 fiscal year, five full-time 159
245+equivalent positions with associated salary rate of 254,408 are 160
246+authorized and the sums of $1,060,804 in recurring funds and 161
247+$21,355 in nonrecurring funds from the General Revenue Fund are 162
248+appropriated to the Department of Health for t he purpose of 163
249+implementing this act. 164
250+ Section 5. This act shall take effect July 1, 2023. 165