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A bill to be entitled 1
An act relating to sickle cell disease medications, 2
treatment, and screening; creating s. 383.147, F.S.; 3
requiring certain health care providers to notify 4
primary care physicians of newborns and infants of 5
certain screening results relating to sickle cell 6
hemoglobin variants and to submit such results to the 7
Department of Health for a specified purpose; 8
requiring such physicians to provide certain 9
information to certain parents and guardians; 10
requiring the department to contract with a specified 11
center to establish and maintain a sickle cell 12
registry; providing the purpose of the registry; 13
authorizing certain parents and guardians to request 14
to have their children removed from the registry; 15
providing duties of the department and the center; 16
providing requirements for certain notification; 17
requiring the department to adopt rules; creating s. 18
409.91235, F.S.; requiring the Agency for Health Care 19
Administration, in consultation with certain entities, 20
to review sickle cell disease medications, treatments, 21
and services for Medicaid recipients and develop a 22
written report, post the report on its website, and 23
submit a copy of the report to the Governor, the 24
Legislature, and certain entities by a specified date 25
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and every 2 years thereafter; providing requirements 26
for the report; providing an appropriation; providing 27
an effective date. 28
29
Be It Enacted by the Legislature of the State of Florida: 30
31
Section 1. Section 383.147, Florida Statutes, is created 32
to read: 33
383.147 Newborn and infant screenings for sickle ce ll 34
hemoglobin variants; registry. — 35
(1) If a screening provider detects that a newborn or 36
infant, as those terms are defined in s. 383.145(2), is carrying 37
a sickle cell hemoglobin variant, it must notify the primary 38
care physician of the newborn or infant and submit the results 39
of such screening to the Department of Health for inclusion in 40
the sickle cell registry established under paragraph (2)(a). The 41
primary care physician must provide to the parent or guardian of 42
the newborn or infant information regar ding the availability and 43
benefits of genetic counseling. 44
(2)(a) The Department of Health shall contract with a 45
community-based sickle cell disease medical treatment and 46
research center to establish and maintain a registry for 47
newborns and infants who ar e identified as carrying a sickle 48
cell hemoglobin variant. The sickle cell registry must track 49
sickle cell disease outcome measures. A parent or guardian of a 50
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newborn or infant may request to have his or her child removed 51
from the registry by submitting a form prescribed by the 52
department by rule. 53
(b) The Department of Health shall also establish a system 54
to ensure that the community -based sickle cell disease medical 55
treatment and research center notifies the parent or guardian of 56
a child who has been inc luded in the registry that a followup 57
consultation with a physician is recommended. Such notice must 58
be provided to the parent or guardian of such child at least 59
once during early adolescence and once during late adolescence. 60
The department shall make ever y reasonable effort to notify 61
persons who are 18 years of age and who have been included in 62
the registry that they may request to be removed from the 63
registry by submitting a form prescribed by the department by 64
rule. The department shall also provide to s uch persons 65
information regarding available educational services, genetic 66
counseling, and other beneficial resources. 67
(3) The Department of Health shall adopt rules to 68
implement this section. 69
Section 2. Section 409.91235, Florida Statutes, is created 70
to read: 71
409.91235 Agency review and report on medications, 72
treatments, and services for sickle cell disease. — 73
(1) The Agency for Health Care Administration, in 74
consultation with the Florida Medical Schools Quality Network 75
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and a dedicated sickle cell disease medical treatment and 76
research center that maintains a sickle cell patient database 77
and tracks sickle cell disease outcome measures, shall, every 2 78
years: 79
(a) Conduct a review to determine whether the available 80
covered medications, treatments, an d services for sickle cell 81
disease are adequate to meet the needs of Medicaid recipients 82
diagnosed with such disease and whether the agency should seek 83
to add additional medications, treatments, or services for 84
better outcomes. 85
(b)1. Develop a written re port that details the review 86
findings. 87
2. By November 1, 2024, and every other year thereafter, 88
post the report on the agency's website. 89
3. Submit a copy of the report to the Governor, the 90
President of the Senate, the Speaker of the House of 91
Representatives, the Department of Health Office of Minority 92
Health and Health Equity, and the Rare Disease Advisory Council. 93
(2)(a) The report must be based on the data collected from 94
the prior 2 years and must include any recommendations for 95
improvements in the delivery of and access to medications, 96
treatments, or services for Medicaid recipients diagnosed with 97
sickle cell disease. 98
(b) The report must provide detailed information on 99
Medicaid recipients diagnosed with sickle cell disease, 100
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including: 101
1. The total number of Medicaid recipients diagnosed with 102
sickle cell disease. 103
2. The age and population demographics of the Medicaid 104
recipients diagnosed with sickle cell disease. 105
3. The health care utilization patterns and total 106
expenditures, both ph armaceutical and medical, for services 107
provided by Medicaid for all Medicaid recipients diagnosed with 108
sickle cell disease. 109
4. The number of Medicaid recipients diagnosed with sickle 110
cell disease within the general sickle cell patient population 111
who have experienced two or more emergency room visits or two or 112
more hospital inpatient admissions in a 12 -month period, 113
including length of stay, and the expenditures, both 114
pharmaceutical and medical, for those Medicaid recipients. 115
5. The number of clinical tr eatment programs available for 116
the care of Medicaid recipients diagnosed with sickle cell 117
disease which are specifically designed or certified to provide 118
health care coordination and health care access for individuals 119
diagnosed with sickle cell disease and the number of those 120
clinical treatment programs, per region, with which managed care 121
plans have contracted. 122
6. An assessment of the agency's existing payment 123
methodologies for approved treatments or medications for the 124
treatment of sickle cell disease i n the inpatient setting and 125
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whether such payment methodologies result in barriers to access. 126
If barriers to access are identified, an assessment of whether 127
such methodologies may be modified or improved through the 128
adoption of new or additional policies. 129
Section 3. For the 2023-2024 fiscal year, the sum of 130
$250,000 in nonrecurring funds from the General Revenue Fund is 131
appropriated for the Agency for Health Care Administration to 132
conduct a review and develop a written report which identifies 133
the total number of Medicaid recipients diagnosed with sickle 134
cell disease. The agency shall conduct the review and develop 135
the written report in consultation with the Florida Medical 136
Schools Quality Network and a dedicated sickle cell disease 137
medical treatment and r esearch center that maintains a sickle 138
cell patient database and tracks sickle cell disease outcome 139
measures. The agency shall identify Medicaid recipients 140
diagnosed with sickle cell disease within the general sickle 141
cell patient population who have experi enced two or more 142
emergency room visits or two or more hospital inpatient 143
admissions in a 12-month period. For both of those populations, 144
the agency shall provide detailed information including age and 145
population demographics, health care utilization patte rns and 146
expenditures for all pharmaceutical and medical services 147
provided, and the number of clinical treatment programs 148
available which are specifically designed or certified to 149
provide health care coordination and health care access for 150
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individuals diagnosed with sickle cell disease and the number of 151
those clinical treatment programs available and contracted with 152
managed care plans for the care of Medicaid recipients diagnosed 153
with sickle cell disease. The agency shall submit the report to 154
the Governor, the President of the Senate, the Speaker of the 155
House of Representatives, the Department of Health Office of 156
Minority Health and Health Equity, and the Rare Disease Advisory 157
Council by November 1, 2024. 158
Section 4. This act shall take effect July 1, 2023. 159