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A bill to be entitled 1
An act relating to sickle cell disease; creating s. 2
383.147, F.S.; requiring a screening provider to 3
notify the primary care physician of newborns and 4
infants if the sickle cell trait is detected and 5
submit the results to the Department of Health for a 6
specified purpose; requiring the primary care 7
physician to provide certain information to the parent 8
or guardian of such newborns and infants; requiring 9
the department to develop and maintain a registry for 10
newborns and infants identified as carrying the sick le 11
cell trait; authorizing a parent or guardian to 12
request the removal of his or her child from the 13
registry by submitting a certain form; requiring the 14
department to establish a system for notifying parents 15
or guardians of children included in the registr y of 16
specified information; providing requirements for such 17
notice; requiring the department to provide certain 18
notice and information to persons who are included in 19
the registry and have reached the age of majority; 20
requiring the department to adopt rules ; creating s. 21
385.213, F.S.; requiring the department to collect 22
information and data regarding sickle cell disease and 23
its variants for specified purposes; requiring the 24
department to use such information and data for 25
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specified purposes; requiring health care providers to 26
submit information relating to the diagnosis or 27
treatment of patients with sickle cell disease and its 28
variants to the department; specifying such 29
information; requiring health care facilities to make 30
certain records available to the depa rtment; requiring 31
the department to publish a report on its website by a 32
specified date and annually; specifying the 33
information and data to be included in such report; 34
requiring the department to adopt rules; creating s. 35
385.214, F.S.; requiring the depar tment to establish a 36
Sickle Cell Disease Education and Grant Program; 37
providing requirements for such program; requiring the 38
department to award grants to certain organizations 39
approved by the department; requiring the department 40
to develop and implement r equirements for grant 41
applications and criteria for awarding grants to 42
approved organizations; authorizing the department to 43
award grants to certain community -based organizations; 44
providing requirements for such organizations; 45
requiring the department to a dopt rules; creating s. 46
409.91191, F.S.; requiring the Agency for Health Care 47
Administration to conduct an annual review of 48
medications, treatments, and services provided for 49
Medicaid recipients diagnosed with sickle cell 50
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disease; providing a purpose and r equirements for such 51
annual review; requiring the agency to solicit and 52
consider input from the public; requiring the agency 53
to submit a report to the Legislature by a specified 54
date and annually and post such report on its website; 55
creating s. 409.91192, F.S.; requiring the agency to 56
conduct a study regarding innovative sickle cell 57
disease therapies; providing requirements for such 58
study; requiring the agency to hold public hearings; 59
requiring the agency to submit a report to the 60
Governor and Legislature b y a specified date; 61
requiring the agency to publish the study on its 62
website; creating s. 409.9751, F.S.; requiring the 63
agency to require Medicaid managed care plans to 64
develop and implement sickle cell disease quality 65
strategy plans; providing requirement s for such plans; 66
requiring Medicaid managed care plans to submit their 67
sickle cell disease quality strategy plans to the 68
agency by a specified date; providing duties for the 69
agency; creating ss. 627.64192 and 641.31078, F.S.; 70
defining the term "iatrogenic infertility"; requiring 71
health insurance policies and health maintenance 72
contracts to provide coverage for standard fertility 73
preservation services under certain circumstances; 74
prohibiting health insurers and health maintenance 75
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organizations from discrimi nating against an 76
applicant, policyholder, or subscriber, as applicable, 77
based on certain factors; providing applicability; 78
providing an effective date. 79
80
Be It Enacted by the Legislature of the State of Florida: 81
82
Section 1. Section 383.147, Florida Statutes, is created 83
to read: 84
383.147 Newborn and infant screening for sickle cell 85
trait; registry.— 86
(1) If a screening provider detects that a newborn or 87
infant, as those terms are defined in s. 383.145(2), is carrying 88
the sickle cell trait, it must notify the primary care physician 89
of the newborn or infant and submit the results of such 90
screening to the Department of Health for inclusion in the 91
registry established under paragraph (2)(a). The primary care 92
physician must provide to the parent or guard ian of the newborn 93
or infant information regarding the availability and benefits of 94
genetic counseling. 95
(2)(a) The Department of Health shall develop and maintain 96
a registry for newborns and infants who are identified as 97
carrying the sickle cell trait. A parent or guardian of a 98
newborn or infant may request to have his or her child removed 99
from the registry by submitting a form prescribed by the 100
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department in rule. 101
(b) The department shall also establish a system for 102
notifying the parents or guardians o f children who have been 103
included in the registry that a followup consultation with a 104
physician is recommended. Such notice must be provided to the 105
parents or guardians of such children at least once during early 106
adolescence and once during late adolescenc e. The department 107
shall make every reasonable effort to notify persons who are 18 108
years of age and have been included in the registry that they 109
may request to be removed from the registry by submitting a form 110
prescribed by the department in rule. The depar tment shall also 111
provide to such persons information regarding available 112
educational services, genetic counseling, and other beneficial 113
resources. 114
(3) The Department of Health shall adopt rules to 115
implement this section. 116
Section 2. Section 385.213, F lorida Statutes, is created 117
to read: 118
385.213 Sickle cell disease; information and data 119
collection; annual report. — 120
(1)(a) The Department of Health shall collect information 121
and data regarding sickle cell disease and its variants, 122
including, but not lim ited to, a record of the number patients 123
with sickle cell disease or its variants in the state, for the 124
purposes of enhancing epidemiological research and surveys and 125
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evaluating the effectiveness of the various treatments for 126
sickle cell disease and its va riants. 127
(b) The department shall use the information and data it 128
collects pursuant to this section to analyze trends among 129
patients diagnosed with sickle cell disease or its variants, 130
investigate such trends to facilitate and improve the treatment 131
of such patients, and advance research and education relating to 132
sickle cell disease and its variants. 133
(2)(a) A health care provider who diagnoses or treats a 134
patient with sickle cell disease or a variant of such disease 135
shall submit information relating to su ch diagnosis or treatment 136
to the Department of Health in a form and manner prescribed by 137
department rule. Such information must include, but need not be 138
limited to, all of the following: 139
1. A patient's name, address, age, and ethnicity. 140
2. Whether a patient has been diagnosed with a variant of 141
sickle cell disease. 142
3. The methods used to treat a patient. 143
4. Whether a patient has been diagnosed with any other 144
diseases or illnesses. 145
5. A patient's history of accessing health care services 146
for the treatment of sickle cell disease or a variant of such 147
disease, if known. 148
6. If a patient has died, his or her age at the time of 149
death. 150
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(b) A health care facility must make available to the 151
department its records relating to each case of sickle cell 152
disease and its variants. 153
(3) By July 1, 2023, and each year thereafter, the 154
Department of Health shall publish a report based on the 155
information and data collected pursuant to subsection (2) on its 156
website in a manner that is readily accessible to the publ ic. 157
Such annual report must include, but need not be limited to, all 158
of the following information and data: 159
1. The number of patients diagnosed with sickle cell 160
disease or its variants by county, age, gender, or other 161
demographics. 162
2. Health care utili zation data for all patients diagnosed 163
with sickle cell disease or its variants. 164
3. Health care utilization data for patients diagnosed 165
with sickle cell disease or its variants who are 60 years of age 166
or older. 167
4. The number of patients diagnosed with sickle cell 168
disease or its variants who transition from pediatric to adult 169
care upon reaching 18 years of age. 170
(4) The Department of Health shall adopt rules to 171
implement this section. 172
Section 3. Section 385.214, Florida Statutes, is created 173
to read: 174
385.214 Sickle Cell Disease Education and Grant Program. — 175
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(1) The Department of Health shall establish a Sickle Cell 176
Disease Education and Grant Program. The program must include, 177
but is not limited to, all of the following components: 178
(a) A statewide public education and outreach campaign to 179
promote awareness of evidence -based sickle cell disease 180
screening, detection, and educational services. 181
(b) Program criteria for awarding grants to organizations 182
approved by the department. 183
(c) Compilation and dissemination of data relevant to 184
sickle cell disease screening, detection, and treatment. 185
(d) Development of health care provider education and 186
training programs, including, but not limited to, topics 187
relating to the benefits of early detection of si ckle cell 188
disease and clinical examinations, the recommended frequency of 189
clinical examinations and sickle cell disease screenings, and 190
professionally recognized best practices guidelines. 191
(2)(a) The Department of Health shall award grants to 192
approved organizations that provide services to persons with 193
sickle cell disease and engage in any of the following 194
activities: 195
1. Promote the early detection of sickle cell disease, 196
including, but not limited to, clinical examinations and 197
screenings; 198
2. Counsel persons diagnosed with sickle cell disease 199
regarding evidence-based screenings, followup care, and 200
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referrals; 201
3. Disseminate information regarding sickle cell disease, 202
early detection, and screening to unserved and underserved 203
populations, the general pu blic, and health care providers and 204
facilities; 205
4. Identify local sickle cell disease screening service 206
providers within the approved organization's region; or 207
5. Provide information regarding the availability of 208
medical assistance to persons requiring treatment for sickle 209
cell disease. 210
(b) The department shall develop and implement 211
requirements for grant applications and criteria for awarding 212
grants to approved organizations. 213
(c) The department may also award grants to community -214
based organizations that provide postdiagnosis counseling and 215
education and outreach programs for persons diagnosed with 216
sickle cell disease. A community -based organization must provide 217
comprehensive sickle cell disease educational and support 218
services at no cost and must en sure that persons with sickle 219
cell disease are responsible for making decisions regarding 220
their care. 221
(3) The Department of Health shall adopt rules to 222
implement this section. 223
Section 4. Section 409.91191, Florida Statutes, is created 224
to read: 225
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409.91191 Medicaid recipients with sickle cell disease; 226
annual review and report. — 227
(1) The agency shall conduct an annual review of all 228
medications, treatments, and services provided for Medicaid 229
recipients with a diagnosis of sickle cell disease. The p urpose 230
of the annual review is to determine if the available covered 231
medications, treatments, and services are adequate to meet the 232
needs of Medicaid recipients with a diagnosis of sickle cell 233
disease and whether the agency should seek federal approval to 234
include additional medications, treatments, or services for 235
coverage under the Medicaid program. In conducting its review, 236
the agency must examine: 237
(a) The benefits of transferring youth who are 238
transitioning to adulthood to adult care settings. 239
(b) Whether patients with sickle cell disease receive the 240
equivalent standard of care if referred or transferred to an 241
out-of-state facility. 242
(c) The extent to which the agency reimburses patients 243
with sickle cell disease for reasonable interstate travel cos ts. 244
(d) The extent to which providers in emergency hospital 245
settings are adequately trained and otherwise prepared to treat 246
and manage patients with sickle cell disease who are presenting 247
with vaso-occlusive crises. 248
(2) The agency shall solicit and con sider input from the 249
public, with an emphasis on input from persons or entities with 250
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knowledge and experience in the area of sickle cell disease 251
treatment. 252
(3) By July 1, 2023, and each July 1 thereafter, the 253
agency shall submit a report containing its f indings and 254
recommendations to the Senate President and the Speaker of the 255
House of Representatives and the chairs of the appropriate 256
legislative committees. The agency must post such report on its 257
website in a manner that is readily accessible to the publ ic. 258
Section 5. Section 409.91192, Florida Statutes, is created 259
to read: 260
409.91192 Innovative sickle cell disease therapies; study 261
and report.— 262
(1)(a) The agency shall conduct a study of approaches to 263
reimbursing, covering, and improving access to i nnovative sickle 264
cell disease therapies which may include, but need not be 265
limited to, separate payments from inpatient bundling, outcomes -266
based arrangements, carve -outs for costs from managed care, and 267
risk-assuming carriers or reinsurance pools. 268
(b) The study must include an evaluation of current 269
reimbursement methodologies under the Medicaid program and 270
whether such methodologies restrict access to potentially 271
curative one-time sickle cell disease therapies. The agency must 272
hold at least two public hea rings at which stakeholders are to 273
provide input. 274
(2) By July 1, 2023, the agency shall submit a report to 275
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the Governor, the President of the Senate, and the Speaker of 276
the House of Representatives which contains the agency's 277
findings and recommendations for providing equitable and 278
appropriate access to innovative sickle cell disease therapies. 279
The agency shall publish the complete study on its website in a 280
manner that is readily accessible to the public. 281
Section 6. Section 409.9751, Florida Statutes, is created 282
to read: 283
409.9751 Quality care for enrollees with sickle cell 284
disease.— 285
(1)(a) The agency must ensure that high quality care and 286
services are made available and accessible to enrollees with 287
sickle cell disease. The agency shall require Medi caid managed 288
care plans to develop and implement sickle cell disease quality 289
strategy plans that must include, but are not limited to: 290
1. Improving the identification of enrollees with sickle 291
cell disease. 292
2. Ensuring that provider networks are capable of 293
providing adequate and timely access to specialty providers. 294
3. Implementing care coordination strategies to assist 295
enrollees with sickle cell disease in accessing specialists and 296
other related care supports. 297
4. Providing training and education for health care 298
providers regarding sickle cell disease, including, but not 299
limited to, topics relating to the emergency warning signs and 300
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complications of sickle cell disease, evidence -based practices 301
and treatment guidelines for sickle cell disease, and pro viding 302
appropriate referrals to specialty providers. 303
(b) Each Medicaid managed care plan shall submit its 304
sickle cell disease quality strategy plans to the agency by 305
October 1, 2023. 306
(2)(a) The agency shall perform all of the following 307
duties: 308
1. Develop quarterly reports regarding the number of 309
children and adults enrolled in each Medicaid managed care plan 310
who have been identified as having sickle cell disease. 311
2. In coordination with Medicaid managed care plans, 312
identify, document, and share best practices regarding sickle 313
cell disease care management and coordination with primary care 314
and specialty providers. 315
3. Enter into partnerships with a postsecondary 316
educational institution to develop a sickle cell disease -focused 317
comprehensive assessment tool to screen enrollees identified 318
with sickle cell disease for various factors relevant to care. 319
4. Establish performance standards for Medicaid managed 320
care plans which relate to access to care and availability of 321
therapies, patient engagement in tre atment, and outcomes for 322
patients with sickle cell disease, with incentive payments for 323
meeting such standards. 324
5. Develop and implement a plan for improving the 325
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transition of patients from pediatric care to adult care for 326
adolescents with sickle cell di sease, including, but not limited 327
to, assisting qualified beneficiaries who may not be eligible 328
for Medicaid coverage due to age to maintain coverage under 329
another eligibility category. 330
6. Incorporate the performance standards established under 331
subparagraph 4. into Medicaid managed care plan contracts by 332
imposing financial or administrative penalties for failing to 333
meet the performance standards and making adjustments to 334
contracted plan rates. 335
Section 7. Section 627.64192, Florida Statutes, is created 336
to read: 337
627.64192 Coverage for fertility preservation services; 338
discrimination prohibited. — 339
(1)(a) As used in this subsection, the term "iatrogenic 340
infertility" means the impairment of fertility by any medical 341
treatment, including, but not limited to, treatment for sickle 342
cell disease, that affects the reproductive organs or processes.343
(b) A health insurance policy issued, amended, delivered, 344
or renewed on or after July 1, 2022, in this state must provide 345
coverage for standard fertility preservatio n services, 346
including, but not limited to, storage costs, when a necessary 347
medical treatment may directly or indirectly cause iatrogenic 348
infertility to a policyholder. 349
(2) When determining coverage for fertility preservation 350
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services, a health insurer ma y not discriminate against an 351
applicant or policyholder based on the applicant's or 352
policyholder's expected length of life, disability, degree of 353
medical dependency, quality of life, other health conditions, or 354
personal characteristics. This subsection doe s not apply if the 355
United States Department of Health and Human Services issues 356
regulations or guidance requiring the state to defray the cost 357
of coverage for fertility preservation services. 358
Section 8. Section 641.31078, Florida Statutes, is created 359
to read: 360
641.31078 Coverage for fertility preservation services; 361
discrimination prohibited. — 362
(1)(a) As used in this subsection, the term "iatrogenic 363
infertility" means the impairment of fertility by any medical 364
treatment, including, but not limited to, treatment for sickle 365
cell disease, that affects the reproductive organs or processes.366
(b) A health maintenance contract issued or renewed on or 367
after July 1, 2022, shall provide coverage for standard 368
fertility preservation services, including, but not lim ited to, 369
storage costs, when a necessary medical treatment may directly 370
or indirectly cause iatrogenic infertility to a subscriber. 371
(2) When determining coverage for fertility preservation 372
services, a health maintenance organization may not discriminate 373
against a subscriber based on the subscriber's expected length 374
of life, disability, degree of medical dependency, quality of 375
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life, other health conditions, or personal characteristics. This 376
subsection does not apply if the United States Department of 377
Health and Human Services issues regulations or guidance 378
requiring the state to defray the cost of coverage for fertility 379
preservation services. 380
Section 9. This act shall take effect July 1, 2022. 381