Bill Text: FL S7070 | 2024 | Regular Session | Introduced


Bill Title: Sickle Cell Disease Research and Treatment Education

Spectrum: Committee Bill

Status: (Introduced - Dead) 2024-03-06 - Laid on Table, refer to HB 7085 [S7070 Detail]

Download: Florida-2024-S7070-Introduced.html
       Florida Senate - 2024                                    SB 7070
       
       
        
       By the Appropriations Committee on Health and Human Services
       
       
       
       
       
       603-03523-24                                          20247070__
    1                        A bill to be entitled                      
    2         An act relating to sickle cell disease research and
    3         treatment education; creating s. 381.814, F.S.;
    4         creating the Sickle Cell Disease Research and
    5         Treatment Grant Program within the Department of
    6         Health; defining terms; providing purposes of the
    7         program and its long-term goals; requiring the Office
    8         of Minority Health and Health Equity within the
    9         department to use funds appropriated to the program to
   10         award grants to community-based sickle cell disease
   11         medical treatment and research centers operating in
   12         this state; specifying the types of projects that may
   13         be funded under the program; limiting the percentage
   14         of grant funding which may be used for administrative
   15         expenses; authorizing certain appropriated funds to be
   16         carried over for a specified timeframe; specifying
   17         duties of the department; requiring the department to
   18         submit an annual report to the Governor and the
   19         Legislature; specifying requirements for the report;
   20         authorizing the department to adopt rules; amending s.
   21         383.147, F.S.; revising sickle cell disease and sickle
   22         cell trait screening requirements; requiring screening
   23         providers to notify a newborn’s parent or guardian,
   24         rather than the newborn’s primary care physician, of
   25         certain information; providing for the ability of the
   26         parent or guardian of a newborn to opt out of the
   27         newborn’s inclusion in the sickle cell registry;
   28         specifying the manner in which a parent or guardian
   29         may opt out; requiring the department to notify the
   30         parent or guardian of the ability to opt out before
   31         including the newborn in the registry; authorizing
   32         certain persons other than newborns who have been
   33         identified as having sickle cell disease or carrying
   34         the sickle cell trait to choose to be included in the
   35         department’s sickle cell registry; creating s.
   36         456.0311, F.S.; requiring the applicable licensing
   37         boards for specified health care professions to
   38         require a 2-hour continuing education course on sickle
   39         cell disease care management as part of every second
   40         biennial licensure or certification renewal;
   41         specifying requirements for the course; specifying the
   42         procedure for licensees and certificateholders to
   43         submit confirmation of completing the course;
   44         authorizing the applicable boards to approve
   45         additional equivalent courses to satisfy the
   46         requirement; authorizing the applicable boards to
   47         include the course hours in the total hours of
   48         continuing education required for the applicable
   49         profession, with an exception; authorizing health care
   50         practitioners holding two or more licenses or
   51         certificates subject to the course requirement to show
   52         proof of completion of one course to satisfy the
   53         requirement for all such licenses or certificates;
   54         providing for disciplinary action; authorizing the
   55         applicable boards to adopt rules; providing an
   56         effective date.
   57          
   58  Be It Enacted by the Legislature of the State of Florida:
   59  
   60         Section 1. Section 381.814, Florida Statutes, is created to
   61  read:
   62         381.814Sickle Cell Disease Research and Treatment Grant
   63  Program.—The Sickle Cell Disease Research and Treatment Grant
   64  Program is created within the Department of Health.
   65         (1) DEFINITIONS.—As used in this section, the term:
   66         (a) “Center of excellence” means a health care facility
   67  dedicated to the treatment of patients with sickle cell disease
   68  which provides evidence-based, comprehensive, patient-centered
   69  coordinated care consistent with criteria established by the
   70  department.
   71         (b) “Department” means the Department of Health.
   72         (c) “Health care practitioner” has the same meaning as
   73  provided in s. 456.001.
   74         (d) “Program” means the Sickle Cell Disease Research and
   75  Treatment Grant Program.
   76         (e) “Sickle cell disease” means the group of hereditary
   77  blood disorders caused by an abnormal type of hemoglobin
   78  resulting in malformed red blood cells with impaired function.
   79  The term includes both symptomatic manifestations of sickle cell
   80  disease and the asymptomatic sickle cell trait.
   81         (2) PURPOSE.—The purpose of the program is to fund projects
   82  that improve the quality and accessibility of health care
   83  available for persons living with sickle cell disease in this
   84  state, as well as to advance the collection and analysis of
   85  comprehensive data to support research of sickle cell disease.
   86  The long-term goals of the program are to:
   87         (a) Improve the health outcomes and quality of life for
   88  Floridians with sickle cell disease.
   89         (b) Expand access to high-quality, specialized care for
   90  sickle cell disease.
   91         (c) Improve awareness and understanding among health care
   92  practitioners of current best practices for the treatment and
   93  management of sickle cell disease.
   94         (3) GRANTS.—Using funds appropriated for the program, the
   95  Office of Minority Health and Health Equity within the
   96  department shall award grants to community-based sickle cell
   97  disease medical treatment and research centers operating in this
   98  state to fund projects specific to sickle cell disease in the
   99  following project areas:
  100         (a) Sickle cell disease workforce development and
  101  education.—Such projects include, but are not limited to,
  102  facility-based education programs, continuing education
  103  curriculum development, and outreach and education activities
  104  with the local health care practitioner community. Workforce
  105  development and education projects must be based on current
  106  evidence-based clinical practice guidelines for sickle cell
  107  disease.
  108         (b) Sickle cell disease treatment centers of excellence.
  109  Such projects include, but are not limited to, operational
  110  support for existing centers of excellence, facility enhancement
  111  of existing centers of excellence, and the establishment of new
  112  centers of excellence.
  113         (c) Surveillance and evaluation.—Such projects include, but
  114  are not limited to, the maintenance of and improvements to an
  115  existing sickle cell disease and sickle cell trait registry.
  116         (4)USE OF GRANT FUNDS.—The recipient of a grant awarded
  117  under the program may not use more than 5 percent of grant funds
  118  for administrative expenses. Notwithstanding s. 216.301 and
  119  pursuant to s. 216.351, the balance of any appropriation from
  120  the General Revenue Fund for the program which is not disbursed
  121  but is obligated pursuant to contract or committed to be
  122  expended by June 30 of the fiscal year in which the funds are
  123  appropriated may be carried forward for up to 5 years after the
  124  effective date of the original appropriation.
  125         (5) DEPARTMENT DUTIES.—The department shall do all of the
  126  following:
  127         (a) Publicize the availability of funds under the program
  128  and establish an application process for submitting a grant
  129  proposal.
  130         (b) Develop uniform data reporting requirements for the
  131  purpose of evaluating the performance of the grant recipients
  132  and demonstrating improved health outcomes.
  133         (c) Develop a monitoring process to evaluate progress
  134  toward meeting grant objectives.
  135         (6) ANNUAL REPORT.—By March 1 of each year, the department
  136  shall submit a report to the Governor, the President of the
  137  Senate, and the Speaker of the House of Representatives. The
  138  report must include, at a minimum, the status and progress for
  139  each project supported by the program during the previous
  140  calendar year, any recommendations for improving the program,
  141  and all of the following components for each supported project:
  142         (a) A summary of the project and the project outcomes or
  143  expected project outcomes.
  144         (b) The status of the project, including whether it has
  145  concluded or the estimated date of completion.
  146         (c) The amount of the grant awarded and the estimated or
  147  actual cost of the project.
  148         (d) The source and amount of any federal, state, or local
  149  government grants or donations or private grants or donations
  150  funding the project.
  151         (e) A list of all entities involved in the project.
  152         (7) RULES.—The department may adopt rules to implement this
  153  section.
  154         Section 2. Section 383.147, Florida Statutes, is amended to
  155  read:
  156         383.147 Newborn and infant screenings for Sickle cell
  157  disease and sickle cell trait hemoglobin variants; registry.—
  158         (1) If a screening provider detects that a newborn or an
  159  infant, as those terms are defined in s. 383.145(2), is
  160  identified as having sickle cell disease or the sickle cell
  161  trait through the newborn screening program as described in s.
  162  383.14, the department carrying a sickle cell hemoglobin
  163  variant, it must:
  164         (a) Notify the parent or guardian of the newborn and
  165  provide information regarding the availability and benefits of
  166  genetic counseling; primary care physician of the newborn or
  167  infant and
  168         (b) Submit the results of such screening to the Department
  169  of Health for inclusion in the sickle cell registry established
  170  under paragraph (2)(a), unless the parent or guardian of the
  171  newborn provides an opt-out form obtained from the department,
  172  or otherwise indicates in writing to the department his or her
  173  objection to having the newborn included in the registry. The
  174  department must notify the parent or guardian of the ability to
  175  opt out before including the newborn in the registry. The
  176  primary care physician must provide to the parent or guardian of
  177  the newborn or infant information regarding the availability and
  178  benefits of genetic counseling.
  179         (2)(a) The Department of Health shall contract with a
  180  community-based sickle cell disease medical treatment and
  181  research center to establish and maintain a registry for
  182  individuals newborns and infants who are identified as carrying
  183  a sickle cell disease or the sickle cell trait hemoglobin
  184  variant. The sickle cell registry must track sickle cell disease
  185  outcome measures, except as provided in paragraph (1)(b). A
  186  parent or guardian of a newborn or an infant in the registry may
  187  request to have his or her child removed from the registry by
  188  submitting a form prescribed by the department by rule.
  189         (b) In addition to newborns identified and included in the
  190  registry under subsection (1), other persons living in this
  191  state who have been identified as having sickle cell disease or
  192  the sickle cell trait may choose to be included in the registry
  193  by providing the department with notification as prescribed by
  194  rule.
  195         (c) The Department of Health shall also establish a system
  196  to ensure that the community-based sickle cell disease medical
  197  treatment and research center notifies the parent or guardian of
  198  a child who has been included in the registry that a follow-up
  199  consultation with a physician is recommended. Such notice must
  200  be provided to the parent or guardian of such child at least
  201  once during early adolescence and once during late adolescence.
  202  The department shall make every reasonable effort to notify
  203  persons included in the registry who are 18 years of age that
  204  they may request to be removed from the registry by submitting a
  205  form prescribed by the department by rule. The department shall
  206  also provide to such persons information regarding available
  207  educational services, genetic counseling, and other beneficial
  208  resources.
  209         (3) The Department of Health shall adopt rules to implement
  210  this section.
  211         Section 3. Section 456.0311, Florida Statutes, is created
  212  to read:
  213         456.0311 Requirement for instruction on sickle cell
  214  disease.—
  215         (1)(a) The applicable board shall require each person
  216  licensed or certified under chapter 458, chapter 459, or part I
  217  of chapter 464 to complete a 2-hour continuing education course,
  218  approved by the board, on sickle cell disease care management as
  219  part of every second biennial licensure or certification
  220  renewal. The course shall consist of education specific to
  221  sickle cell disease and the sickle cell trait, including, but
  222  not limited to, evidence-based treatment guidelines for patients
  223  of all ages, continuing patient and family education, periodic
  224  comprehensive evaluations and other disease-specific health
  225  maintenance services, psychosocial care, genetic counseling, and
  226  pain management.
  227         (b) Each licensee or certificateholder shall submit
  228  confirmation of having completed such course on a form provided
  229  by the applicable board when submitting fees for each second
  230  biennial renewal.
  231         (c) The board may approve additional equivalent courses
  232  that may be used to satisfy the requirements of paragraph (a).
  233  Each licensing board that requires a licensee to complete an
  234  educational course pursuant to this section may include the hour
  235  required for completion of the course in the total hours of
  236  continuing education required by law for such profession unless
  237  the continuing education requirements for such profession
  238  consist of fewer than 30 hours biennially.
  239         (d)Any person holding two or more licenses subject to this
  240  section may show proof of having taken one board-approved course
  241  to satisfy the requirements of paragraph (a) for purposes of
  242  relicensure or recertification for additional licenses.
  243         (e) Failure to comply with the requirements of this section
  244  constitutes grounds for disciplinary action under each
  245  respective practice act and under s. 456.072(1)(k).
  246         (2) Each applicable board may adopt rules to implement this
  247  section.
  248         Section 4. This act shall take effect July 1, 2024.

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