Florida 2023 Regular Session

Florida House Bill H1481 Compare Versions

Version 1 (Old)

Version 2 (New)

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3		-	~~CS/~~CS/CS/HB 1481 2023
	3	+	CS/CS/HB 1481 2023
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7	7		CODING: Words stricken are deletions; words underlined are additions.
8		-	hb1481-~~03-c3~~
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10	10		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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14	14		A bill to be entitled 1
15	15		An act relating to sickle cell disease medications, 2
16	16		treatment, and screening; creating s. 383.147, F.S.; 3
17	17		requiring certain health care providers to notify 4
18	18		primary care physicians of newborns and infants of 5
19	19		certain screening results relating to sickle cell 6
20	20		hemoglobin variants and to submit such results to the 7
21	21		Department of Health for a specified purpose; 8
22	22		requiring such physicians to provide certain 9
23	23		information to certain parents and guardians; 10
24	24		requiring the department to contract with a specified 11
25	25		center to establish and maintain a sickle cell 12
26	26		registry; providing the purpose of the registry; 13
27	27		authorizing certain parents and guardians to request 14
28	28		to have their children removed from the registry; 15
29	29		providing duties of the department and the center; 16
30	30		providing requirements for certain notification; 17
31	31		requiring the department to adopt rules; creating s. 18
32	32		409.91235, F.S.; requiring the Agency for Health Care 19
33	33		Administration, in consultation with certain entities, 20
34	34		to review sickle cell disease medications, treatments, 21
35	35		and services for Medicaid recipients and develop a 22
36	36		written report, post the report on its website, and 23
37	37		submit a copy of the report to the Governor, the 24
38	38		Legislature, and certain entities by a specified date 25
39	39
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	40	+	CS/CS/HB 1481 2023
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44	44		CODING: Words stricken are deletions; words underlined are additions.
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47	47		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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51	51		and every 2 years thereafter; providing requirements 26
52	52		for the report; providing appropriations and 27
53	53		authorizing positions; providing an effective date. 28
54	54		29
55	55		Be It Enacted by the Legislature of the State of Florida: 30
56	56		31
57	57		Section 1. Section 383.147, Florida Statutes, is created 32
58	58		to read: 33
59	59		383.147 Newborn and infant screenings for sickle cell 34
60	60		hemoglobin variants; registry. — 35
61	61		(1) If a screening provider detects that a newborn or 36
62	62		infant, as those terms are defined in s. 383.145(2), is carrying 37
63	63		a sickle cell hemoglobin variant, it must notify the primary 38
64	64		care physician of the newborn or infant and submit the results 39
65	65		of such screening to the Department of Health for inclusion in 40
66	66		the sickle cell registry established under paragraph (2)(a). The 41
67	67		primary care physician must provide to the parent or guardian of 42
68	68		the newborn or infant information regarding the availability and 43
69	69		benefits of genetic counseling. 44
70	70		(2)(a) The Department of Health shall contract with a 45
71	71		community-based sickle cell disease medical treatment and 46
72	72		research center to establish and maintain a registry for 47
73	73		newborns and infants who are identified as carrying a sickle 48
74	74		cell hemoglobin variant. The sickle cell registry must track 49
75	75		sickle cell disease outcome measures. A parent or guardian of a 50
76	76
77		-	~~CS/~~CS/CS/HB 1481 2023
	77	+	CS/CS/HB 1481 2023
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81	81		CODING: Words stricken are deletions; words underlined are additions.
82		-	hb1481-~~03-c3~~
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84	84		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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88	88		newborn or infant may request to have his or her child removed 51
89	89		from the registry by submitting a form prescribed by the 52
90	90		department by rule. 53
91	91		(b) The Department of Health shall also establish a system 54
92	92		to ensure that the community -based sickle cell disease medical 55
93	93		treatment and research center notifies the parent or guardian of 56
94	94		a child who has been included in the registry that a followup 57
95	95		consultation with a physician is recommended. Such notice must 58
96	96		be provided to the parent or guardian of such child at least 59
97	97		once during early adolescence and once during late adolescence. 60
98	98		The department shall make every reasonable effort to notify 61
99	99		persons who are 18 years of age and who have been included in 62
100	100		the registry that they may request to be removed from the 63
101	101		registry by submitting a form prescribed by the department by 64
102	102		rule. The department shall also provide to such persons 65
103	103		information regarding available educational services, genetic 66
104	104		counseling, and other beneficial resources. 67
105	105		(3) The Department of Health shall adopt rules to 68
106	106		implement this section. 69
107	107		Section 2. Section 409.91235, Flor ida Statutes, is created 70
108	108		to read: 71
109	109		409.91235 Agency review and report on medications, 72
110	110		treatments, and services for sickle cell disease. — 73
111	111		(1) The Agency for Health Care Administration, in 74
112	112		consultation with the Florida Medical Schools Quality Network 75
113	113
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118	118		CODING: Words stricken are deletions; words underlined are additions.
119		-	hb1481-~~03-c3~~
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121	121		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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125	125		and a dedicated sickle cell disease medical treatment and 76
126	126		research center that maintains a sickle cell patient database 77
127	127		and tracks sickle cell disease outcome measures, shall, every 2 78
128	128		years: 79
129	129		(a) Conduct a review to determine whether the available 80
130	130		covered medications, treatments, and services for sickle cell 81
131	131		disease are adequate to meet the needs of Medicaid recipients 82
132	132		diagnosed with such disease and whether the agency should seek 83
133	133		to add additional medications, treatments, or services for 84
134	134		better outcomes. 85
135	135		(b)1. Develop a written report that details the review 86
136	136		findings. 87
137	137		2. By November 1, 2024, and every other year thereafter, 88
138	138		post the report on the agency's website. 89
139	139		3. Submit a copy of the report to the Governor, the 90
140	140		President of the Senate, the Speaker of the House of 91
141	141		Representatives, the Department of Health Office of Minority 92
142	142		Health and Health Equity, and the Rare Disease Advisory Council. 93
143	143		(2)(a) The report must be based on the data collected from 94
144	144		the prior 2 years and must include any recommendations for 95
145	145		improvements in the delivery of and access to medications, 96
146	146		treatments, or services for Medicaid recipients diagnosed with 97
147	147		sickle cell disease. 98
148	148		(b) The report must provide detailed information on 99
149	149		Medicaid recipients diagnosed with sickle cell disease, 100
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151		-	~~CS/~~CS/CS/HB 1481 2023
	151	+	CS/CS/HB 1481 2023
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155	155		CODING: Words stricken are deletions; words underlined are additions.
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	156	+	hb1481-02-c2
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158	158		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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162	162		including: 101
163	163		1. The total number of Medicaid recipients diagnosed with 102
164	164		sickle cell disease. 103
165	165		2. The age and population demographics of the Medicaid 104
166	166		recipients diagnosed with sickle cell disease. 105
167	167		3. The health care utilization patterns and total 106
168	168		expenditures, both pharmaceutical and medical, for services 107
169	169		provided by Medicaid for all Medicaid recipients diagnosed with 108
170	170		sickle cell disease. 109
171	171		4. The number of Medicaid recipients diagnosed with sickle 110
172	172		cell disease within the general sickle cell patient popul ation 111
173	173		who have experienced two or more emergency room visits or two or 112
174	174		more hospital inpatient admissions in a 12 -month period, 113
175	175		including length of stay, and the expenditures, both 114
176	176		pharmaceutical and medical, for those Medicaid recipients. 115
177	177		5. The number of clinical treatment programs available for 116
178	178		the care of Medicaid recipients diagnosed with sickle cell 117
179	179		disease which are specifically designed or certified to provide 118
180	180		health care coordination and health care access for individuals 119
181	181		diagnosed with sickle ce ll disease and the number of those 120
182	182		clinical treatment programs, per region, with which managed care 121
183	183		plans have contracted. 122
184	184		6. An assessment of the agency's existing payment 123
185	185		methodologies for approved treatments or medications for the 124
186	186		treatment of sickle cell disease in the inpatient setting and 125
187	187
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	188	+	CS/CS/HB 1481 2023
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192	192		CODING: Words stricken are deletions; words underlined are additions.
193		-	hb1481-~~03-c3~~
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	193	+	hb1481-02-c2
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195	195		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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199	199		whether such payment methodologies result in barriers to access. 126
200	200		If barriers to access are identified, an assessment of whether 127
201	201		such methodologies may be modified or improved through the 128
202	202		adoption of new or addition al policies. 129
203	203		Section 3. For the 2023-2024 fiscal year, the sum of 130
204	204		$250,000 in nonrecurring funds from the General Revenue Fund is 131
205		-	appropriated to the Agency for Health Care Administration for 132
206		-	the purpose of implementing this act. 133
207		-	Section 4. For the 2023-2024 fiscal year, five full -time 134
208		-	equivalent positions with associated salary rate of 254,408 are 135
209		-	authorized and the sums of $1,060,804 in recurring funds and 136
210		-	$21,355 in nonrecurring funds from the General Revenue Fund are 137
211		-	appropriated to the Department of Health for the purpose of 138
212		-	implementing this act. 139
213		-	Section 5. This act shall take effect July 1, 2023. 140
	205	+	appropriated for the Agency for Health Care Administration to 132
	206	+	conduct a review and develop a written report which identifi es 133
	207	+	the total number of Medicaid recipients diagnosed with sickle 134
	208	+	cell disease. The agency shall conduct the review and develop 135
	209	+	the written report in consultation with the Florida Medical 136
	210	+	Schools Quality Network and a dedicated sickle cell disease 137
	211	+	medical treatment and research center that maintains a sickle 138
	212	+	cell patient database and tracks sickle cell disease outcome 139
	213	+	measures. The agency shall identify Medicaid recipients 140
	214	+	diagnosed with sickle cell disease within the general sickle 141
	215	+	cell patient population w ho have experienced two or more 142
	216	+	emergency room visits or two or more hospital inpatient 143
	217	+	admissions in a 12-month period. For both of those populations, 144
	218	+	the agency shall provide detailed information including age and 145
	219	+	population demographics, health care uti lization patterns and 146
	220	+	expenditures for all pharmaceutical and medical services 147
	221	+	provided, and the number of clinical treatment programs 148
	222	+	available which are specifically designed or certified to 149
	223	+	provide health care coordination and health care access for 150
	224	+
	225	+	CS/CS/HB 1481 2023
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	229	+	CODING: Words stricken are deletions; words underlined are additions.
	230	+	hb1481-02-c2
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	232	+	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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	236	+	individuals diagnosed with sickle cell disease and the number of 151
	237	+	those clinical treatment programs available and contracted with 152
	238	+	managed care plans for the care of Medicaid recipients diagnosed 153
	239	+	with sickle cell disease. The agency shall submit the report to 154
	240	+	the Governor, the President of the Senate, the Speaker of the 155
	241	+	House of Representatives, the Department of Health Office of 156
	242	+	Minority Health and Health Equity, and the Rare Disease Advisory 157
	243	+	Council by November 1, 2024. 158
	244	+	Section 4. For the 2023-2024 fiscal year, five full-time 159
	245	+	equivalent positions with associated salary rate of 254,408 are 160
	246	+	authorized and the sums of $1,060,804 in recurring funds and 161
	247	+	$21,355 in nonrecurring funds from the General Revenue Fund are 162
	248	+	appropriated to the Department of Health for t he purpose of 163
	249	+	implementing this act. 164
	250	+	Section 5. This act shall take effect July 1, 2023. 165