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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
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 appropriations and 27
authorizing positions; providing 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 cell 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 p aragraph (2)(a). The 41
primary care physician must provide to the parent or guardian of 42
the newborn or infant information regarding 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 are 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 communit y-based sickle cell disease medical 55
treatment and research center notifies the parent or guardian of 56
a child who has been included in the registry that a followup 57
consultation with a physician is recommended. Such notice must 58
be provided to the parent or g uardian of such child at least 59
once during early adolescence and once during late adolescence. 60
The department shall make every 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 b e removed from the 63
registry by submitting a form prescribed by the department by 64
rule. The department shall also provide to such 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, and services for sickle cell 81
disease are adequate to meet the needs of Medicaid recipients 82
diagnosed with such disease and whether th e agency should seek 83
to add additional medications, treatments, or services for 84
better outcomes. 85
(b)1. Develop a written report 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 w ebsite. 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 pharmaceutical 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 treatment programs available for 116
the care of Medicaid recipients diagnosed with sickle cell 117
disease which are specifically design ed 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 in the inpatient setting and 125
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whether such payment methodologies result in barriers to access. 126
If barriers to access are identifi ed, 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 to the Agency for Health Care Administration for 132
the purpose of implementing this act. 133
Section 4. For the 2023-2024 fiscal year, five full -time 134
equivalent positions with associated salary rate of 254,408 are 135
authorized and the sums of $1,060,804 in recurring funds and 136
$21,355 in nonrecurring funds from the General Revenue Fund are 137
appropriated to the Department of Health for the purpose of 138
implementing this act. 139
Section 5. This act shall take effect July 1, 2023. 140