Florida Senate - 2023 COMMITTEE AMENDMENT
Bill No. SB 1352
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LEGISLATIVE ACTION
Senate . House
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The Appropriations Committee on Health and Human Services
(Rouson) recommended the following:
1 Senate Amendment (with title amendment)
2
3 Delete everything after the enacting clause
4 and insert:
5 Section 1. Section 383.147, Florida Statutes, is created to
6 read:
7 383.147 Newborn and infant screenings for sickle cell
8 hemoglobin variants; registry.—
9 (1) If a screening provider detects that a newborn or an
10 infant, as those terms are defined in s. 383.145(2), is carrying
11 a sickle cell hemoglobin variant, it must notify the primary
12 care physician of the newborn or infant and submit the results
13 of such screening to the Department of Health for inclusion in
14 the sickle cell registry established under paragraph (2)(a). The
15 primary care physician must provide to the parent or guardian of
16 the newborn or infant information regarding the availability and
17 benefits of genetic counseling.
18 (2)(a) The Department of Health shall contract with a
19 community-based sickle cell disease medical treatment and
20 research center to establish and maintain a registry for
21 newborns and infants who are identified as carrying a sickle
22 cell hemoglobin variant. The sickle cell registry must track
23 sickle cell disease outcome measures. A parent or guardian of a
24 newborn or an infant in the registry may request to have his or
25 her child removed from the registry by submitting a form
26 prescribed by the department by rule.
27 (b) The Department of Health shall also establish a system
28 to ensure that the community-based sickle cell disease medical
29 treatment and research center notifies the parent or guardian of
30 a child who has been included in the registry that a follow-up
31 consultation with a physician is recommended. Such notice must
32 be provided to the parent or guardian of such child at least
33 once during early adolescence and once during late adolescence.
34 The department shall make every reasonable effort to notify
35 persons included in the registry who are 18 years of age that
36 they may request to be removed from the registry by submitting a
37 form prescribed by the department by rule. The department shall
38 also provide to such persons information regarding available
39 educational services, genetic counseling, and other beneficial
40 resources.
41 (3) The Department of Health shall adopt rules to implement
42 this section.
43 Section 2. Section 409.91235, Florida Statutes, is created
44 to read:
45 409.91235 Agency review and report on medications,
46 treatments, and services for sickle cell disease.—
47 (1) The Agency for Health Care Administration, in
48 consultation with the Florida Medical Schools Quality Network
49 and a dedicated sickle cell disease medical treatment and
50 research center that maintains a sickle cell patient database
51 and tracks sickle cell disease outcome measures, shall, every 2
52 years:
53 (a) Conduct a review to determine whether the available
54 covered medications, treatments, and services for sickle cell
55 disease are adequate to meet the needs of Medicaid recipients
56 diagnosed with such disease and whether the agency should seek
57 to add additional medications, treatments, or services to
58 improve outcomes.
59 (b)1. Develop a written report that details the review
60 findings.
61 2. Beginning November 1, 2024, and by November 1 of every
62 other year thereafter, post the report on the agency’s website.
63 3. Submit a copy of the report to the Governor, the
64 President of the Senate, the Speaker of the House of
65 Representatives, the Department of Health’s Office of Minority
66 Health and Health Equity, and the Rare Disease Advisory Council.
67 (2)(a) The report developed under subsection (1) must be
68 based on the data collected from the prior 2 years and must
69 include any recommendations for improvements in the delivery of
70 and access to medications, treatments, or services for Medicaid
71 recipients diagnosed with sickle cell disease.
72 (b) The report must provide detailed information on
73 Medicaid recipients diagnosed with sickle cell disease,
74 including:
75 1. The total number of Medicaid recipients diagnosed with
76 sickle cell disease.
77 2. The age and population demographics of the Medicaid
78 recipients diagnosed with sickle cell disease.
79 3. The health care utilization patterns and total
80 expenditures, both pharmaceutical and medical, for services
81 provided by Medicaid for all Medicaid recipients diagnosed with
82 sickle cell disease.
83 4. The number of Medicaid recipients diagnosed with sickle
84 cell disease within the general sickle cell patient population
85 who have experienced two or more emergency room visits or two or
86 more hospital inpatient admissions in a 12-month period,
87 including length of stay, and the expenditures, both
88 pharmaceutical and medical, for those Medicaid recipients.
89 5. The number of clinical treatment programs available for
90 the care of Medicaid recipients diagnosed with sickle cell
91 disease which are specifically designed or certified to provide
92 health care coordination and health care access for individuals
93 diagnosed with sickle cell disease and the number of those
94 clinical treatment programs, per region, with which managed care
95 plans have contracted.
96 6. An assessment of the agency’s existing payment
97 methodologies for approved treatments or medications for the
98 treatment of sickle cell disease in the inpatient setting and
99 whether such payment methodologies result in barriers to access.
100 If barriers to access are identified, the report must include an
101 assessment of whether such methodologies may be modified or
102 improved through the adoption of new or additional policies.
103 Section 3. For the 2023-2024 fiscal year, the sum of
104 $250,000 in nonrecurring funds from the General Revenue Fund is
105 appropriated for the Department of Health to contract with a
106 community-based sickle cell disease medical treatment and
107 research center to establish and maintain the sickle cell
108 registry established under s. 383.147, Florida Statutes, as
109 created by this act.
110 Section 4. This act shall take effect July 1, 2023.
111
112 ================= T I T L E A M E N D M E N T ================
113 And the title is amended as follows:
114 Delete everything before the enacting clause
115 and insert:
116 A bill to be entitled
117 An act relating to sickle cell disease medications,
118 treatment, and screening; creating s. 383.147, F.S.;
119 requiring newborn and infant screening providers to
120 notify primary care physicians of newborns and infants
121 of certain screening results and to submit the results
122 to the Department of Health for a specified purpose;
123 requiring such physicians to provide certain
124 information to parents and guardians of such newborns
125 or infants; requiring the department to contract with
126 a certain center to establish and maintain a sickle
127 cell registry; providing a requirement for the
128 registry; authorizing parents and guardians of
129 children in the registry to request to have them
130 removed from the registry; providing duties of the
131 department and the center; providing requirements for
132 certain notification that the center must provide to
133 parents and guardians; requiring the department to
134 adopt rules; creating s. 409.91235, F.S.; requiring
135 the Agency for Health Care Administration, in
136 consultation with certain entities, to review sickle
137 cell disease medications, treatments, and services for
138 Medicaid recipients and develop a written report, post
139 the report on its website, and submit a copy of the
140 report to the Governor, the Legislature, and certain
141 entities by a specified date and every 2 years
142 thereafter; providing requirements for the report;
143 providing an appropriation; providing an effective
144 date.