HB 1481 2023
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hb1481-00
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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 review and report on sickle cell 2
disease medications, treatments, and services for 3
Medicaid recipients; creating s. 409.91235, F.S.; 4
requiring the Agency for Health Care Administration, 5
in consultation with certain entities, to review 6
sickle cell disease medications, treatments, and 7
services for Medicaid recipients and develop a written 8
report, post the report on its website, and submit a 9
copy of the report to the Governor, the Legislature, 10
and certain entities by a specified date and every 2 11
years thereafter; providing requirements for the 12
report; providing an appropriation; providing an 13
effective date. 14
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Be It Enacted by the Legislature of t he State of Florida: 16
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Section 1. Section 409.91235, Florida Statutes, is created 18
to read: 19
409.91235 Agency review and report on medications, 20
treatments, and services for sickle cell disease. — 21
(1) The Agency for Health Care Administration, in 22
consultation with the Florida Medical Schools Quality Network 23
and a dedicated sickle cell disease medical treatment and 24
research center that maintains a sickle cell patient database 25
HB 1481 2023
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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
and tracks sickle cell disease outcome measures, shall, every 2 26
years: 27
(a) Conduct a review to determine whether the available 28
covered medications, treatments, and services for sickle cell 29
disease are adequate to meet the needs of Medicaid recipients 30
diagnosed with such disease and whether the agency should seek 31
to add additional me dications, treatments, or services for 32
better outcomes. 33
(b)1. Develop a written report that details the review 34
findings. 35
2. By November 1, 2024, and every other year thereafter, 36
post the report on the agency's website. 37
3. Submit a copy of the report to the Governor, the 38
President of the Senate, the Speaker of the House of 39
Representatives, the Department of Health Office of Minority 40
Health and Health Equity, and the Rare Disease Advisory Council. 41
(2)(a) The report must be based on the data collected from 42
the prior 2 years and must include any recommendations for 43
improvements in the delivery of and access to medications, 44
treatments, or services for Medicaid recipients diagnosed with 45
sickle cell disease. 46
(b) The report must provide detailed informatio n on 47
Medicaid recipients diagnosed with sickle cell disease, 48
including: 49
1. The total number of Medicaid recipients diagnosed with 50
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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
sickle cell disease. 51
2. The age and population demographics of the Medicaid 52
recipients diagnosed with sickle cell disease. 53
3. The health care utilization patterns and total 54
expenditures, both pharmaceutical and medical, for services 55
provided by Medicaid for all Medicaid recipients diagnosed with 56
sickle cell disease. 57
4. The number of Medicaid recipients diagnosed with sickle 58
cell disease within the general sickle cell patient population 59
who have experienced two or more emergency room visits or two or 60
more hospital inpatient admissions in a 12 -month period, 61
including length of stay, and the expenditures, both 62
pharmaceutical and medical, for those Medicaid recipients. 63
5. The number of clinical treatment programs available for 64
the care of Medicaid recipients diagnosed with sickle cell 65
disease which are specifically designed or certified to provide 66
health care coordination and health care access for individuals 67
diagnosed with sickle cell disease and the number of those 68
clinical treatment programs, per region, with which managed care 69
plans have contracted. 70
6. An assessment of the agency's existing payment 71
methodologies for approved treatments or medications for the 72
treatment of sickle cell disease in the inpatient setting and 73
whether such payment methodologies result in barriers to access. 74
If barriers to access are identified, an assessment of whether 75
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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
such methodologies may be modified or improved through the 76
adoption of new or additional policies. 77
Section 2. For the 2023-2024 fiscal year, the sum of 78
$250,000 in nonrecurring funds from the General Revenue Fund is 79
appropriated for the Agency for Health Care Administration to 80
conduct a review and develop a written report which identifies 81
the total number of Medicaid recipients diagnosed with sickle 82
cell disease. The agency shall conduct the review and develop 83
the written report in consultation with the Florida Medical 84
Schools Quality Network and a dedicated sickle cell disease 85
medical treatment and research center that maintains a sickle 86
cell patient database and tracks sickle cell disease outcome 87
measures. The agency shall identify Medicaid recipients 88
diagnosed with sickle cell disease within the general sickle 89
cell patient population who have experienced two or more 90
emergency room visits or two or more hospital inpatient 91
admissions in a 12-month period. For both of those populations, 92
the agency shall provide detailed inform ation including age and 93
population demographics, health care utilization patterns and 94
expenditures for all pharmaceutical and medical services 95
provided, and the number of clinical treatment programs 96
available which are specifically designed or certified to 97
provide health care coordination and health care access for 98
individuals diagnosed with sickle cell disease and the number of 99
those clinical treatment programs available and contracted with 100
HB 1481 2023
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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
managed care plans for the care of Medicaid recipients diagnosed 101
with sickle cell disease. The agency shall submit the report to 102
the Governor, the President of the Senate, the Speaker of the 103
House of Representatives, the Department of Health Office of 104
Minority Health and Health Equity, and the Rare Disease Advisory 105
Council by November 1, 2024. 106
Section 3. This act shall take effect July 1, 2023. 107