Senate Bill 7070 (2024) — Sickle cell disease research and treatment education
SB 7070
Florida Bills
Florida Senate - 2024 SB 7070 By the Appropriations Committee on Health and Human Services 603-03523-24 20247070__ Page 1 of 9 CODING: Words stricken are deletions; words underlined are additions. A bill to be entitled 1
An act relating to sickle cell disease research and 2 treatment education; creating s. 381.814, F.S.; 3 creating the Sickle Cell Disease Research and 4 Treatment Grant Program within the Department of 5 Health; defining terms; providing purposes of the 6 program and its long-term goals; requiring the Office 7 of Minority Health and Health Equity within the 8 department to use funds appropriated to the program to 9 award grants to community-based sickle cell disease 10 medical treatment and research centers operating in 11 this state; specifying the types of projects that may 12 be funded under the program; limiting the percentage 13 of grant funding which may be used for administrative 14 expenses; authorizing certain appropriated funds to be 15 carried over for a specified timeframe; specifying 16 duties of the department; requiring the department to 17 submit an annual report to the Governor and the 18 Legislature; specifying requirements for the report; 19 authorizing the department to adopt rules; amending s. 20 383.147, F.S.; revising sickle cell disease and sickle 21 cell trait screening requirements; requiring screening 22 providers to notify a newborn’s parent or guardian, 23 rather than the newborn’s primary care physician, of 24 certain information; providing for the ability of the 25 parent or guardian of a newborn to opt out of the 26 newborn’s inclusion in the sickle cell registry; 27 specifying the manner in which a parent or guardian 28 may opt out; requiring the department to notify the 29
Florida Senate - 2024 SB 7070 603-03523-24 20247070__ Page 2 of 9 CODING: Words stricken are deletions; words underlined are additions. parent or guardian of the ability to opt out before 30 including the newborn in the registry; authorizing 31 certain persons other than newborns who have been 32 identified as having sickle cell disease or carrying 33 the sickle cell trait to choose to be included in the 34 department’s sickle cell registry; creating s. 35 456.0311, F.S.; requiring the applicable licensing 36 boards for specified health care professions to 37 require a 2-hour continuing education course on sickle 38 cell disease care management as part of every second 39 biennial licensure or certification renewal; 40 specifying requirements for the course; specifying the 41 procedure for licensees and certificateholders to 42 submit confirmation of completing the course; 43 authorizing the applicable boards to approve 44 additional equivalent courses to satisfy the 45 requirement; authorizing the applicable boards to 46 include the course hours in the total hours of 47 continuing education required for the applicable 48 profession, with an exception; authorizing health care 49 practitioners holding two or more licenses or 50 certificates subject to the course requirement to show 51 proof of completion of one course to satisfy the 52 requirement for all such licenses or certificates; 53 providing for disciplinary action; authorizing the 54 applicable boards to adopt rules; providing an 55 effective date. 56 57 Be It Enacted by the Legislature of the State of Florida: 58
Florida Senate - 2024 SB 7070 603-03523-24 20247070__ Page 3 of 9 CODING: Words stricken are deletions; words underlined are additions. 59
Section
Section 381.814, Florida Statutes, is created to 60 read: 61 381.814 Sickle Cell Disease Research and Treatment Grant 62 Program.—The Sickle Cell Disease Research and Treatment Grant 63 Program is created within the Department of Health. 64
(1) DEFINITIONS.—As used in this section, the term: 65 (a) “Center of excellence” means a health care facility 66 dedicated to the treatment of patients with sickle cell disease 67 which provides evidence-based, comprehensive, patient-centered 68 coordinated care consistent with criteria established by the 69 department. 70 (b) “Department” means the Department of Health. 71 (c) “Health care practitioner” has the same meaning as 72 provided in s. 456.001. 73 (d) “Program” means the Sickle Cell Disease Research and 74 Treatment Grant Program. 75 (e) “Sickle cell disease” means the group of hereditary 76 blood disorders caused by an abnormal type of hemoglobin 77 resulting in malformed red blood cells with impaired function. 78 The term includes both symptomatic manifestations of sickle cell 79 disease and the asymptomatic sickle cell trait. 80
(2) PURPOSE.—The purpose of the program is to fund projects 81 that improve the quality and accessibility of health care 82 available for persons living with sickle cell disease in this 83 state, as well as to advance the collection and analysis of 84 comprehensive data to support research of sickle cell disease. 85 The long-term goals of the program are to: 86 (
a) Improve the health outcomes and quality of life for 87
Florida Senate - 2024 SB 7070 603-03523-24 20247070__ Page 4 of 9 CODING: Words stricken are deletions; words underlined are additions. Floridians with sickle cell disease. 88 (
b) Expand access to high-quality, specialized care for 89 sickle cell disease. 90 (
c) Improve awareness and understanding among health care 91 practitioners of current best practices for the treatment and 92 management of sickle cell disease. 93
(3) GRANTS.—Using funds appropriated for the program, the 94 Office of Minority Health and Health Equity within the 95 department shall award grants to community-based sickle cell 96 disease medical treatment and research centers operating in this 97 state to fund projects specific to sickle cell disease in the 98 following project areas: 99 (
a) Sickle cell disease workforce development and 100 education.—Such projects include, but are not limited to, 101 facility-based education programs, continuing education 102 curriculum development, and outreach and education activities 103 with the local health care practitioner community. Workforce 104 development and education projects must be based on current 105 evidence-based clinical practice guidelines for sickle cell 106 disease. 107 (
b) Sickle cell disease treatment centers of excellence.—108 Such projects include, but are not limited to, operational 109 support for existing centers of excellence, facility enhancement 110 of existing centers of excellence, and the establishment of new 111 centers of excellence. 112 (
c) Surveillance and evaluation.—Such projects include, but 113 are not limited to, the maintenance of and improvements to an 114 existing sickle cell disease and sickle cell trait registry. 115
(4) USE OF GRANT FUNDS.—The recipient of a grant awarded 116
Florida Senate - 2024 SB 7070 603-03523-24 20247070__ Page 5 of 9 CODING: Words stricken are deletions; words underlined are additions. under the program may not use more than 5 percent of grant funds 117 for administrative expenses. Notwithstanding s. 216.301 and 118 pursuant to s. 216.351, the balance of any appropriation from 119 the General Revenue Fund for the program which is not disbursed 120 but is obligated pursuant to contract or committed to be 121 expended by June 30 of the fiscal year in which the funds are 122 appropriated may be carried forward for up to 5 years after the 123 effective date of the original appropriation. 124
(5) DEPARTMENT DUTIES.—The department shall do all of the 125 following: 126 (
a) Publicize the availability of funds under the program 127 and establish an application process for submitting a grant 128 proposal. 129 (
b) Develop uniform data reporting requirements for the 130 purpose of evaluating the performance of the grant recipients 131 and demonstrating improved health outcomes. 132 (
c) Develop a monitoring process to evaluate progress 133 toward meeting grant objectives. 134
(6) ANNUAL REPORT.—By March 1 of each year, the department 135 shall submit a report to the Governor, the President of the 136 Senate, and the Speaker of the House of Representatives. The 137 report must include, at a minimum, the status and progress for 138 each project supported by the program during the previous 139 calendar year, any recommendations for improving the program, 140 and all of the following components for each supported project: 141 (
a) A
summary of the project and the project outcomes or 142 expected project outcomes. 143 (
b) The status of the project, including whether it has 144 concluded or the estimated date of completion. 145
Florida Senate - 2024 SB 7070 603-03523-24 20247070__ Page 6 of 9 CODING: Words stricken are deletions; words underlined are additions. (
c) The amount of the grant awarded and the estimated or 146 actual cost of the project. 147 (
d) The source and amount of any federal, state, or local 148 government grants or donations or private grants or donations 149 funding the project. 150 (
e) A list of all entities involved in the project. 151
(7) RULES.—The department may adopt rules to implement this 152 section. 153
Section
Section 383.147, Florida Statutes, is amended to 154 read: 155 383.147 Newborn and infant screenings for Sickle cell 156 disease and sickle cell trait hemoglobin variants; registry.— 157
(1) If a screening provider detects that a newborn or an 158 infant, as those terms are defined in s. 383.145(2), is 159 identified as having sickle cell disease or the sickle cell 160 trait through the newborn screening program as described in s. 161 383.14, the department carrying a sickle cell hemoglobin 162 variant, it must: 163 (
a) Notify the parent or guardian of the newborn and 164 provide information regarding the availability and benefits of 165 genetic counseling; primary care physician of the newborn or 166 infant and 167 (
b) Submit the results of such screening to the Department 168 of Health for inclusion in the sickle cell registry established 169 under paragraph (2)(a), unless the parent or guardian of the 170 newborn provides an opt-out form obtained from the department, 171 or otherwise indicates in writing to the department his or her 172 objection to having the newborn included in the registry. The 173 department must notify the parent or guardian of the ability to 174
Florida Senate - 2024 SB 7070 603-03523-24 20247070__ Page 7 of 9 CODING: Words stricken are deletions; words underlined are additions. opt out before including the newborn in the registry. The 175 primary care physician must provide to the parent or guardian of 176 the newborn or infant information regarding the availability and 177 benefits of genetic counseling. 178 (2)(
a) The Department of Health shall contract with a 179 community-based sickle cell disease medical treatment and 180 research center to establish and maintain a registry for 181 individuals newborns and infants who are identified as carrying 182 a sickle cell disease or the sickle cell trait hemoglobin 183 variant. The sickle cell registry must track sickle cell disease 184 outcome measures, except as provided in paragraph (1)(b). A 185 parent or guardian of a newborn or an infant in the registry may 186 request to have his or her child removed from the registry by 187 submitting a form prescribed by the department by rule. 188 (
b) In addition to newborns identified and included in the 189 registry under subsection (1), other persons living in this 190 state who have been identified as having sickle cell disease or 191 the sickle cell trait may choose to be included in the registry 192 by providing the department with notification as prescribed by 193 rule. 194 (
c) The Department of Health shall also establish a system 195 to ensure that the community-based sickle cell disease medical 196 treatment and research center notifies the parent or guardian of 197 a child who has been included in the registry that a follow-up 198 consultation with a physician is recommended. Such notice must 199 be provided to the parent or guardian of such child at least 200 once during early adolescence and once during late adolescence. 201 The department shall make every reasonable effort to notify 202 persons included in the registry who are 18 years of age that 203
Florida Senate - 2024 SB 7070 603-03523-24 20247070__ Page 8 of 9 CODING: Words stricken are deletions; words underlined are additions. they may request to be removed from the registry by submitting a 204 form prescribed by the department by rule. The department shall 205 also provide to such persons information regarding available 206 educational services, genetic counseling, and other beneficial 207 resources. 208
(3) The Department of Health shall adopt rules to implement 209 this section. 210
Section
Section 456.0311, Florida Statutes, is created 211 to read: 212 456.0311 Requirement for instruction on sickle cell 213 disease.— 214 (1)(
a) The applicable board shall require each person 215 licensed or certified under
chapter 458,
chapter 459, or
part I 216 of
chapter 464 to complete a 2-hour continuing education course, 217 approved by the board, on sickle cell disease care management as 218 part of every second biennial licensure or certification 219 renewal. The course shall consist of education specific to 220 sickle cell disease and the sickle cell trait, including, but 221 not limited to, evidence-based treatment guidelines for patients 222 of all ages, continuing patient and family education, periodic 223 comprehensive evaluations and other disease-specific health 224 maintenance services, psychosocial care, genetic counseling, and 225 pain management. 226 (
b) Each licensee or certificateholder shall submit 227 confirmation of having completed such course on a form provided 228 by the applicable board when submitting fees for each second 229 biennial renewal. 230 (
c) The board may approve additional equivalent courses 231 that may be used to satisfy the requirements of paragraph (a). 232
Florida Senate - 2024 SB 7070 603-03523-24 20247070__ Page 9 of 9 CODING: Words stricken are deletions; words underlined are additions. Each licensing board that requires a licensee to complete an 233 educational course pursuant to this
section may include the hour 234 required for completion of the course in the total hours of 235 continuing education required by law for such profession unless 236 the continuing education requirements for such profession 237 consist of fewer than 30 hours biennially. 238 (
d) Any person holding two or more licenses subject to this 239
section may show proof of having taken one board-approved course 240 to satisfy the requirements of paragraph (
a) for purposes of 241 relicensure or recertification for additional licenses. 242 (
e) Failure to comply with the requirements of this
section 243 constitutes grounds for disciplinary action under each 244 respective practice act and under s. 456.072(1)(k). 245
(2) Each applicable board may adopt rules to implement this 246 section. 247