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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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An act relating to sickle cell disease; creating s. 2
381.814, F.S.; creating the Sickle Cell Disease 3
Research and Treatment Grant Program within the 4
Department of Health for a specified purpose; 5
specifying the types of projects that are eligible for 6
grant funding; authorizing the department to adopt 7
rules; providing for the carryforward for a limited 8
period of any unexpended balance of an appropriation 9
for the program; amending s. 383.147, F.S.; revising 10
sickle cell disease and sickle cell trait screening 11
requirements; requiring screening providers to notify 12
a newborn's parent or guardian, rather than the 13
newborn's primary care physician, of certain 14
information; authorizing certain persons other than 15
newborns who have been identified as having sickle 16
cell disease or carrying a sickle cell trait to choose 17
to be included in the registry; providing an effective 18
date. 19
20
Be It Enacted by the Legislature of the State of Florida: 21
22
Section 1. Section 381.814, Florida Statutes, is created 23
to read: 24
381.814 Sickle Cell Disease Research and Treatment Grant 25
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Program.—The Sickle Cell Disease Research and Treatment Grant 26
Program is created within the Department of Health. 27
(1) As used in this section, the term: 28
(a) "Center of excellence" means a health care facility 29
dedicated to the treatment of patients with sickle cell disease 30
which provides evidence -based, comprehensive, patient -centered 31
coordinated care. 32
(b) "Department" means the Department of Health. 33
(c) "Health care practitioner" has the same meaning as 34
provided in s. 456.001. 35
(d) "Program" means the Sickle Cell Disease Research and 36
Treatment Grant Program. 37
(e) "Sickle cell disease" means the gro up of hereditary 38
blood disorders caused by an abnormal type of hemoglobin 39
resulting in malformed red blood cells with impaired function. 40
The term includes both symptomatic manifestations of sickle cell 41
disease and asymptomatic sickle cell trait. 42
(2) The purpose of the program is to fund projects that 43
improve the quality and accessibility of health care services 44
available for persons living with sickle cell disease in this 45
state as well as to advance the collection and analysis of 46
comprehensive data to sup port research of sickle cell disease. 47
The long-term goals of the program are to: 48
(a) Improve the health outcomes and quality of life for 49
Floridians with sickle cell disease. 50
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(b) Expand access to high -quality, specialized care for 51
sickle cell disease. 52
(c) Improve awareness and understanding among health care 53
practitioners of current best practices for the treatment and 54
management of sickle cell disease. 55
(3) Funds appropriated to the program shall be awarded by 56
the Office of Minority Health and Health Equity, within the 57
department, to community -based sickle cell disease medical 58
treatment and research centers operating in this state. 59
(4) The Office of Minority Health and Health Equity shall 60
award grants under the program to community -based sickle cell 61
disease medical treatment and research centers to fund projects 62
specific to sickle cell disease in the following project areas. 63
(a) Sickle cell disease workforce development and 64
education.—Such projects shall include, but need not be limited 65
to, facility-based education programs, continuing education 66
curriculum development, and outreach and education activities 67
with the local health care practitioner community. Workforce 68
development and education projects must be based on current 69
evidence-based clinical practice guidelines for sickle cell 70
disease. 71
(b) Sickle Cell Disease Treatment Centers of Excellence. —72
Such projects shall include, but need not be limited to, 73
operational support for existing centers of excellence, facility 74
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enhancement of existing centers of excellence, and the 75
establishment of new centers of excellence. 76
(5) The department shall: 77
(a) By July 15, 2024, publicize the availability of funds, 78
establish an application process for submitting a grant 79
proposal, and initiate a call for applicati ons. 80
(b) Develop uniform data reporting requirements for the 81
purpose of evaluating the performance of the grant recipients 82
and demonstrating improved health outcomes. 83
(c) Develop a monitoring process to evaluate progress 84
towards meeting grant objective s. 85
(6) The department shall submit an annual report to the 86
Governor, the President of the Senate, the Speaker of the House 87
of Representatives, and the State Surgeon General by March 1 and 88
publish the report on the department's website. The report shall 89
include the status and progress for each project supported by 90
the program during the previous calendar year. The report shall 91
include, at a minimum, recommendations for improving the program 92
and the following components for each project supported by the 93
program: 94
(a) A summary of the project and the project outcomes or 95
expected project outcomes. 96
(b) The status of the project, including whether it is 97
completed or the estimated date of completion. 98
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(c) The amount of the grant awarded and the estimated or 99
actual cost of the project. 100
(d) The source and amount of any federal, state, or local 101
government grants or donations or private grants or donations 102
funding the project. 103
(e) A list of all entities involved in the project. 104
(7) The department may adopt r ules as necessary to 105
implement the provisions of this section. 106
(8) The recipient of a grant awarded under the program may 107
not use more than 5 percent of grant funds for administrative 108
expenses. Notwithstanding s. 216.301 and pursuant to s. 216.351, 109
the balance of any appropriation from the General Revenue Fund 110
for the program which is not disbursed but which is obligated 111
pursuant to contract or committed to be expended by June 30 of 112
the fiscal year in which the funds are appropriated may be 113
carried forward for up to 5 years after the effective date of 114
the original appropriation. 115
Section 2. Section 383.147, Florida Statutes, is amended 116
to read: 117
383.147 Newborn and infant screenings for Sickle cell 118
disease and sickle cell trait hemoglobin variants; registry.— 119
(1) If a screening provider detects that a newborn or an 120
infant, as those terms are defined in s. 383.145(2) , is 121
identified as having sickle cell disease or sickle cell trait 122
through the newborn screening program as described in s. 383.14, 123
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the department carrying a sickle cell hemoglobin variant, it 124
must: 125
(a) Notify the parent or guardian of the newborn and 126
provide information regarding the availability and benefits of 127
genetic counseling primary care physician of the newborn or 128
infant and 129
(b) Submit the results of such screening to the Department 130
of Health for inclusion in the sickle cell registry established 131
under paragraph (2)(a). The primary care physician must provide 132
to the parent or guardian of the newborn or infant information 133
regarding the availability and benefits of genetic counseling. 134
(2)(a) The Department of Health shall contract with a 135
community-based sickle cell disease medical treatment and 136
research center to establish and maintain a registry for 137
individuals newborns and infants who are identified as carrying 138
a sickle cell disease or sickle cell trait hemoglobin variant. 139
The sickle cell registry must track sickle cell disease outcome 140
measures, except as provided in paragraph (1)(b) . A parent or 141
guardian of a newborn or an infan t in the registry may request 142
to have his or her child removed from the registry by submitting 143
a form prescribed by the department by rule. 144
(b) In addition to newborns identified and included in the 145
registry under subsection (1), other persons living in this 146
state who have been identified with sickle cell disease or 147
sickle cell trait may choose to be included in the registry by 148
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providing the department with notification as prescribed by 149
rule. 150
(c)(b) The Department of Health shall also establish a 151
system to ensure that the community -based sickle cell disease 152
medical treatment and research center notifies the parent or 153
guardian of a child who has been included in the registry that a 154
follow-up consultation with a physician is recommended. Such 155
notice must be provided to the parent or guardian of such child 156
at least once during early adolescence and once during late 157
adolescence. The department shall make every reasonable effort 158
to notify persons included in the registry who are 18 years of 159
age that they may request to be removed from the registry by 160
submitting a form prescribed by the department by rule. The 161
department shall also provide to such persons information 162
regarding available educational services, genetic counseling, 163
and other beneficial resources. 164
(3) The Department of Health shall adopt rules to 165
implement this section. 166
Section 3. This act shall take effect upon becoming law. 167