10 | 10 | | 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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11 | 11 | | |
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13 | 13 | | |
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14 | 14 | | A bill to be entitled 1 |
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15 | 15 | | An act relating to sickle cell disease medications, 2 |
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16 | 16 | | treatment, and screening; creating s. 383.147, F.S.; 3 |
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17 | 17 | | requiring certain health care providers to notify 4 |
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18 | 18 | | primary care physicians of newborns and infants of 5 |
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19 | 19 | | certain screening results relating to sickle cell 6 |
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20 | 20 | | hemoglobin variants and to submit such results to the 7 |
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21 | 21 | | Department of Health for a specified purpose; 8 |
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22 | 22 | | requiring such physicians to provide certain 9 |
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23 | 23 | | information to certain parents and guardians; 10 |
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24 | 24 | | requiring the department to contract with a specified 11 |
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25 | 25 | | center to establish and maintain a sickle cell 12 |
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26 | 26 | | registry; providing the purpose of the registry; 13 |
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27 | 27 | | authorizing certain parents and guardians to request 14 |
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28 | 28 | | to have their children removed from the registry; 15 |
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29 | 29 | | providing duties of the department and the center; 16 |
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30 | 30 | | providing requirements for certain notification; 17 |
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31 | 31 | | requiring the department to adopt rules; creating s. 18 |
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32 | 32 | | 409.91235, F.S.; requiring the Agency for Health Care 19 |
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33 | 33 | | Administration, in consultation with certain entities, 20 |
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34 | 34 | | to review sickle cell disease medications, treatments, 21 |
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35 | 35 | | and services for Medicaid recipients and develop a 22 |
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36 | 36 | | written report, post the report on its website, and 23 |
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37 | 37 | | submit a copy of the report to the Governor, the 24 |
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38 | 38 | | Legislature, and certain entities by a specified date 25 |
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39 | 39 | | |
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47 | 47 | | 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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48 | 48 | | |
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49 | 49 | | |
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50 | 50 | | |
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51 | 51 | | and every 2 years thereafter; providing requirements 26 |
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52 | 52 | | for the report; providing appropriations and 27 |
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53 | 53 | | authorizing positions; providing an effective date. 28 |
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54 | 54 | | 29 |
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55 | 55 | | Be It Enacted by the Legislature of the State of Florida: 30 |
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56 | 56 | | 31 |
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57 | 57 | | Section 1. Section 383.147, Florida Statutes, is created 32 |
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58 | 58 | | to read: 33 |
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59 | 59 | | 383.147 Newborn and infant screenings for sickle cell 34 |
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60 | 60 | | hemoglobin variants; registry. — 35 |
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61 | 61 | | (1) If a screening provider detects that a newborn or 36 |
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62 | 62 | | infant, as those terms are defined in s. 383.145(2), is carrying 37 |
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63 | 63 | | a sickle cell hemoglobin variant, it must notify the primary 38 |
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64 | 64 | | care physician of the newborn or infant and submit the results 39 |
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65 | 65 | | of such screening to the Department of Health for inclusion in 40 |
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66 | 66 | | the sickle cell registry established under paragraph (2)(a). The 41 |
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67 | 67 | | primary care physician must provide to the parent or guardian of 42 |
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68 | 68 | | the newborn or infant information regarding the availability and 43 |
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69 | 69 | | benefits of genetic counseling. 44 |
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70 | 70 | | (2)(a) The Department of Health shall contract with a 45 |
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71 | 71 | | community-based sickle cell disease medical treatment and 46 |
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72 | 72 | | research center to establish and maintain a registry for 47 |
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73 | 73 | | newborns and infants who are identified as carrying a sickle 48 |
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74 | 74 | | cell hemoglobin variant. The sickle cell registry must track 49 |
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75 | 75 | | sickle cell disease outcome measures. A parent or guardian of a 50 |
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76 | 76 | | |
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84 | 84 | | 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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85 | 85 | | |
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86 | 86 | | |
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87 | 87 | | |
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88 | 88 | | newborn or infant may request to have his or her child removed 51 |
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89 | 89 | | from the registry by submitting a form prescribed by the 52 |
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90 | 90 | | department by rule. 53 |
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91 | 91 | | (b) The Department of Health shall also establish a system 54 |
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92 | 92 | | to ensure that the community -based sickle cell disease medical 55 |
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93 | 93 | | treatment and research center notifies the parent or guardian of 56 |
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94 | 94 | | a child who has been included in the registry that a followup 57 |
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95 | 95 | | consultation with a physician is recommended. Such notice must 58 |
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96 | 96 | | be provided to the parent or guardian of such child at least 59 |
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97 | 97 | | once during early adolescence and once during late adolescence. 60 |
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98 | 98 | | The department shall make every reasonable effort to notify 61 |
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99 | 99 | | persons who are 18 years of age and who have been included in 62 |
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100 | 100 | | the registry that they may request to be removed from the 63 |
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101 | 101 | | registry by submitting a form prescribed by the department by 64 |
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102 | 102 | | rule. The department shall also provide to such persons 65 |
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103 | 103 | | information regarding available educational services, genetic 66 |
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104 | 104 | | counseling, and other beneficial resources. 67 |
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105 | 105 | | (3) The Department of Health shall adopt rules to 68 |
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106 | 106 | | implement this section. 69 |
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107 | 107 | | Section 2. Section 409.91235, Flor ida Statutes, is created 70 |
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108 | 108 | | to read: 71 |
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109 | 109 | | 409.91235 Agency review and report on medications, 72 |
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110 | 110 | | treatments, and services for sickle cell disease. — 73 |
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111 | 111 | | (1) The Agency for Health Care Administration, in 74 |
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112 | 112 | | consultation with the Florida Medical Schools Quality Network 75 |
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113 | 113 | | |
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121 | 121 | | 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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122 | 122 | | |
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123 | 123 | | |
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124 | 124 | | |
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125 | 125 | | and a dedicated sickle cell disease medical treatment and 76 |
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126 | 126 | | research center that maintains a sickle cell patient database 77 |
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127 | 127 | | and tracks sickle cell disease outcome measures, shall, every 2 78 |
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128 | 128 | | years: 79 |
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129 | 129 | | (a) Conduct a review to determine whether the available 80 |
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130 | 130 | | covered medications, treatments, and services for sickle cell 81 |
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131 | 131 | | disease are adequate to meet the needs of Medicaid recipients 82 |
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132 | 132 | | diagnosed with such disease and whether the agency should seek 83 |
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133 | 133 | | to add additional medications, treatments, or services for 84 |
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134 | 134 | | better outcomes. 85 |
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135 | 135 | | (b)1. Develop a written report that details the review 86 |
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136 | 136 | | findings. 87 |
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137 | 137 | | 2. By November 1, 2024, and every other year thereafter, 88 |
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138 | 138 | | post the report on the agency's website. 89 |
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139 | 139 | | 3. Submit a copy of the report to the Governor, the 90 |
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140 | 140 | | President of the Senate, the Speaker of the House of 91 |
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141 | 141 | | Representatives, the Department of Health Office of Minority 92 |
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142 | 142 | | Health and Health Equity, and the Rare Disease Advisory Council. 93 |
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143 | 143 | | (2)(a) The report must be based on the data collected from 94 |
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144 | 144 | | the prior 2 years and must include any recommendations for 95 |
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145 | 145 | | improvements in the delivery of and access to medications, 96 |
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146 | 146 | | treatments, or services for Medicaid recipients diagnosed with 97 |
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147 | 147 | | sickle cell disease. 98 |
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148 | 148 | | (b) The report must provide detailed information on 99 |
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149 | 149 | | Medicaid recipients diagnosed with sickle cell disease, 100 |
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150 | 150 | | |
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158 | 158 | | 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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159 | 159 | | |
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160 | 160 | | |
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161 | 161 | | |
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162 | 162 | | including: 101 |
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163 | 163 | | 1. The total number of Medicaid recipients diagnosed with 102 |
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164 | 164 | | sickle cell disease. 103 |
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165 | 165 | | 2. The age and population demographics of the Medicaid 104 |
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166 | 166 | | recipients diagnosed with sickle cell disease. 105 |
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167 | 167 | | 3. The health care utilization patterns and total 106 |
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168 | 168 | | expenditures, both pharmaceutical and medical, for services 107 |
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169 | 169 | | provided by Medicaid for all Medicaid recipients diagnosed with 108 |
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170 | 170 | | sickle cell disease. 109 |
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171 | 171 | | 4. The number of Medicaid recipients diagnosed with sickle 110 |
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172 | 172 | | cell disease within the general sickle cell patient popul ation 111 |
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173 | 173 | | who have experienced two or more emergency room visits or two or 112 |
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174 | 174 | | more hospital inpatient admissions in a 12 -month period, 113 |
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175 | 175 | | including length of stay, and the expenditures, both 114 |
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176 | 176 | | pharmaceutical and medical, for those Medicaid recipients. 115 |
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177 | 177 | | 5. The number of clinical treatment programs available for 116 |
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178 | 178 | | the care of Medicaid recipients diagnosed with sickle cell 117 |
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179 | 179 | | disease which are specifically designed or certified to provide 118 |
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180 | 180 | | health care coordination and health care access for individuals 119 |
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181 | 181 | | diagnosed with sickle ce ll disease and the number of those 120 |
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182 | 182 | | clinical treatment programs, per region, with which managed care 121 |
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183 | 183 | | plans have contracted. 122 |
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184 | 184 | | 6. An assessment of the agency's existing payment 123 |
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185 | 185 | | methodologies for approved treatments or medications for the 124 |
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186 | 186 | | treatment of sickle cell disease in the inpatient setting and 125 |
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187 | 187 | | |
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205 | | - | appropriated to the Agency for Health Care Administration for 132 |
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206 | | - | the purpose of implementing this act. 133 |
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207 | | - | Section 4. For the 2023-2024 fiscal year, five full -time 134 |
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208 | | - | equivalent positions with associated salary rate of 254,408 are 135 |
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209 | | - | authorized and the sums of $1,060,804 in recurring funds and 136 |
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210 | | - | $21,355 in nonrecurring funds from the General Revenue Fund are 137 |
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211 | | - | appropriated to the Department of Health for the purpose of 138 |
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212 | | - | implementing this act. 139 |
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213 | | - | Section 5. This act shall take effect July 1, 2023. 140 |
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| 205 | + | appropriated for the Agency for Health Care Administration to 132 |
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| 206 | + | conduct a review and develop a written report which identifi es 133 |
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| 207 | + | the total number of Medicaid recipients diagnosed with sickle 134 |
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| 208 | + | cell disease. The agency shall conduct the review and develop 135 |
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| 209 | + | the written report in consultation with the Florida Medical 136 |
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| 210 | + | Schools Quality Network and a dedicated sickle cell disease 137 |
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| 211 | + | medical treatment and research center that maintains a sickle 138 |
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| 212 | + | cell patient database and tracks sickle cell disease outcome 139 |
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| 213 | + | measures. The agency shall identify Medicaid recipients 140 |
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| 214 | + | diagnosed with sickle cell disease within the general sickle 141 |
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| 215 | + | cell patient population w ho have experienced two or more 142 |
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| 216 | + | emergency room visits or two or more hospital inpatient 143 |
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| 217 | + | admissions in a 12-month period. For both of those populations, 144 |
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| 218 | + | the agency shall provide detailed information including age and 145 |
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| 219 | + | population demographics, health care uti lization patterns and 146 |
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| 220 | + | expenditures for all pharmaceutical and medical services 147 |
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| 221 | + | provided, and the number of clinical treatment programs 148 |
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| 222 | + | available which are specifically designed or certified to 149 |
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| 223 | + | provide health care coordination and health care access for 150 |
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| 224 | + | |
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| 225 | + | CS/CS/HB 1481 2023 |
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| 226 | + | |
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| 227 | + | |
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| 228 | + | |
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| 229 | + | CODING: Words stricken are deletions; words underlined are additions. |
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| 230 | + | hb1481-02-c2 |
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| 231 | + | Page 7 of 7 |
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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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| 233 | + | |
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| 234 | + | |
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| 235 | + | |
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| 236 | + | individuals diagnosed with sickle cell disease and the number of 151 |
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| 237 | + | those clinical treatment programs available and contracted with 152 |
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| 238 | + | managed care plans for the care of Medicaid recipients diagnosed 153 |
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| 239 | + | with sickle cell disease. The agency shall submit the report to 154 |
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| 240 | + | the Governor, the President of the Senate, the Speaker of the 155 |
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| 241 | + | House of Representatives, the Department of Health Office of 156 |
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| 242 | + | Minority Health and Health Equity, and the Rare Disease Advisory 157 |
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| 243 | + | Council by November 1, 2024. 158 |
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| 244 | + | Section 4. For the 2023-2024 fiscal year, five full-time 159 |
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| 245 | + | equivalent positions with associated salary rate of 254,408 are 160 |
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| 246 | + | authorized and the sums of $1,060,804 in recurring funds and 161 |
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| 247 | + | $21,355 in nonrecurring funds from the General Revenue Fund are 162 |
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| 248 | + | appropriated to the Department of Health for t he purpose of 163 |
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| 249 | + | implementing this act. 164 |
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| 250 | + | Section 5. This act shall take effect July 1, 2023. 165 |
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