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