Florida Senate - 2023                        COMMITTEE AMENDMENT
       Bill No. SB 1352
       
       
       
       
       
       
                                Ì678952JÎ678952                         
       
                              LEGISLATIVE ACTION                        
                    Senate             .             House              
                  Comm: RCS            .                                
                  04/12/2023           .                                
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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.