Florida Senate - 2023                             CS for SB 1352
       
       
        
       By the Appropriations Committee on Health and Human Services;
       and Senators Rouson and Davis
       
       
       
       
       603-03747-23                                          20231352c1
    1                        A bill to be entitled                      
    2         An act relating to sickle cell disease medications,
    3         treatment, and screening; creating s. 383.147, F.S.;
    4         requiring newborn and infant screening providers to
    5         notify primary care physicians of newborns and infants
    6         of certain screening results and to submit the results
    7         to the Department of Health for a specified purpose;
    8         requiring such physicians to provide certain
    9         information to parents and guardians of such newborns
   10         or infants; requiring the department to contract with
   11         a certain center to establish and maintain a sickle
   12         cell registry; providing a requirement for the
   13         registry; authorizing parents and guardians of
   14         children in the registry to request to have them
   15         removed from the registry; providing duties of the
   16         department and the center; providing requirements for
   17         certain notification that the center must provide to
   18         parents and guardians; requiring the department to
   19         adopt rules; creating s. 409.91235, F.S.; requiring
   20         the Agency for Health Care Administration, in
   21         consultation with certain entities, to review sickle
   22         cell disease medications, treatments, and services for
   23         Medicaid recipients and develop a written report, post
   24         the report on its website, and submit a copy of the
   25         report to the Governor, the Legislature, and certain
   26         entities by a specified date and every 2 years
   27         thereafter; providing requirements for the report;
   28         providing an appropriation; providing an effective
   29         date.
   30          
   31  Be It Enacted by the Legislature of the State of Florida:
   32  
   33         Section 1. Section 383.147, Florida Statutes, is created to
   34  read:
   35         383.147 Newborn and infant screenings for sickle cell
   36  hemoglobin variants; registry.—
   37         (1) If a screening provider detects that a newborn or an
   38  infant, as those terms are defined in s. 383.145(2), is carrying
   39  a sickle cell hemoglobin variant, it must notify the primary
   40  care physician of the newborn or infant and submit the results
   41  of such screening to the Department of Health for inclusion in
   42  the sickle cell registry established under paragraph (2)(a). The
   43  primary care physician must provide to the parent or guardian of
   44  the newborn or infant information regarding the availability and
   45  benefits of genetic counseling.
   46         (2)(a) The Department of Health shall contract with a
   47  community-based sickle cell disease medical treatment and
   48  research center to establish and maintain a registry for
   49  newborns and infants who are identified as carrying a sickle
   50  cell hemoglobin variant. The sickle cell registry must track
   51  sickle cell disease outcome measures. A parent or guardian of a
   52  newborn or an infant in the registry may request to have his or
   53  her child removed from the registry by submitting a form
   54  prescribed by the department by rule.
   55         (b) The Department of Health shall also establish a system
   56  to ensure that the community-based sickle cell disease medical
   57  treatment and research center notifies the parent or guardian of
   58  a child who has been included in the registry that a follow-up
   59  consultation with a physician is recommended. Such notice must
   60  be provided to the parent or guardian of such child at least
   61  once during early adolescence and once during late adolescence.
   62  The department shall make every reasonable effort to notify
   63  persons included in the registry who are 18 years of age that
   64  they may request to be removed from the registry by submitting a
   65  form prescribed by the department by rule. The department shall
   66  also provide to such persons information regarding available
   67  educational services, genetic counseling, and other beneficial
   68  resources.
   69         (3) The Department of Health shall adopt rules to implement
   70  this section.
   71         Section 2. Section 409.91235, Florida Statutes, is created
   72  to read:
   73         409.91235 Agency review and report on medications,
   74  treatments, and services for sickle cell disease.—
   75         (1) The Agency for Health Care Administration, in
   76  consultation with the Florida Medical Schools Quality Network
   77  and a dedicated sickle cell disease medical treatment and
   78  research center that maintains a sickle cell patient database
   79  and tracks sickle cell disease outcome measures, shall, every 2
   80  years:
   81         (a) Conduct a review to determine whether the available
   82  covered medications, treatments, and services for sickle cell
   83  disease are adequate to meet the needs of Medicaid recipients
   84  diagnosed with such disease and whether the agency should seek
   85  to add additional medications, treatments, or services to
   86  improve outcomes.
   87         (b)1. Develop a written report that details the review
   88  findings.
   89         2. Beginning November 1, 2024, and by November 1 of every
   90  other year thereafter, post the report on the agency’s website.
   91         3. Submit a copy of the report to the Governor, the
   92  President of the Senate, the Speaker of the House of
   93  Representatives, the Department of Health’s Office of Minority
   94  Health and Health Equity, and the Rare Disease Advisory Council.
   95         (2)(a) The report developed under subsection (1) must be
   96  based on the data collected from the prior 2 years and must
   97  include any recommendations for improvements in the delivery of
   98  and access to medications, treatments, or services for Medicaid
   99  recipients diagnosed with sickle cell disease.
  100         (b) The report must provide detailed information on
  101  Medicaid recipients diagnosed with sickle cell disease,
  102  including:
  103         1. The total number of Medicaid recipients diagnosed with
  104  sickle cell disease.
  105         2. The age and population demographics of the Medicaid
  106  recipients diagnosed with sickle cell disease.
  107         3. The health care utilization patterns and total
  108  expenditures, both pharmaceutical and medical, for services
  109  provided by Medicaid for all Medicaid recipients diagnosed with
  110  sickle cell disease.
  111         4. The number of Medicaid recipients diagnosed with sickle
  112  cell disease within the general sickle cell patient population
  113  who have experienced two or more emergency room visits or two or
  114  more hospital inpatient admissions in a 12-month period,
  115  including length of stay, and the expenditures, both
  116  pharmaceutical and medical, for those Medicaid recipients.
  117         5. The number of clinical treatment programs available for
  118  the care of Medicaid recipients diagnosed with sickle cell
  119  disease which are specifically designed or certified to provide
  120  health care coordination and health care access for individuals
  121  diagnosed with sickle cell disease and the number of those
  122  clinical treatment programs, per region, with which managed care
  123  plans have contracted.
  124         6. An assessment of the agency’s existing payment
  125  methodologies for approved treatments or medications for the
  126  treatment of sickle cell disease in the inpatient setting and
  127  whether such payment methodologies result in barriers to access.
  128  If barriers to access are identified, the report must include an
  129  assessment of whether such methodologies may be modified or
  130  improved through the adoption of new or additional policies.
  131         Section 3. For the 2023-2024 fiscal year, the sum of
  132  $250,000 in nonrecurring funds from the General Revenue Fund is
  133  appropriated for the Department of Health to contract with a
  134  community-based sickle cell disease medical treatment and
  135  research center to establish and maintain the sickle cell
  136  registry established under s. 383.147, Florida Statutes, as
  137  created by this act.
  138         Section 4. This act shall take effect July 1, 2023.