Florida Senate - 2024                                     SB 186
       
       
        
       By Senator Brodeur
       
       
       
       
       
       10-00115A-24                                           2024186__
    1                        A bill to be entitled                      
    2         An act relating to a progressive supranuclear palsy
    3         and other neurodegenerative diseases policy workgroup;
    4         providing a short title; creating s. 408.0622, F.S.;
    5         requiring the Secretary of Health Care Administration,
    6         in conjunction with the State Surgeon General, to
    7         establish a progressive supranuclear palsy and other
    8         neurodegenerative diseases policy workgroup; providing
    9         for duties, membership, and meetings of the workgroup;
   10         requiring the secretary to submit annual reports and a
   11         final report by a specified date to the Governor and
   12         the Legislature; providing an effective date.
   13          
   14  Be It Enacted by the Legislature of the State of Florida:
   15  
   16         Section 1. This act may be cited as the “Justo R. Cortes
   17  Progressive Supranuclear Palsy Act.”
   18         Section 2. Section 408.0622, Florida Statutes, is created
   19  to read:
   20         408.0622 Progressive supranuclear palsy and other
   21  neurodegenerative diseases policy workgroup.—
   22         (1) The Secretary of Health Care Administration, in
   23  conjunction with the State Surgeon General, shall establish a
   24  progressive supranuclear palsy and other neurodegenerative
   25  diseases policy workgroup.
   26         (2) The workgroup shall:
   27         (a) Identify the aggregate number of people in the state
   28  diagnosed with progressive supranuclear palsy and other
   29  neurodegenerative diseases annually.
   30         (b) Identify how data is collected regarding diagnoses of
   31  progressive supranuclear palsy and other neurodegenerative
   32  diseases and adverse health outcomes associated with such
   33  conditions.
   34         (c) Identify how progressive supranuclear palsy and other
   35  neurodegenerative diseases impact the lives of people in the
   36  state.
   37         (d) Identify the standard of care for the surveillance,
   38  detection, and treatment of progressive supranuclear palsy and
   39  other neurodegenerative diseases.
   40         (e) Identify emerging treatments, therapies, and research
   41  relating to progressive supranuclear palsy and other
   42  neurodegenerative diseases.
   43         (f) Develop a risk surveillance system to help health care
   44  providers identify patients who may be at a higher risk of
   45  developing progressive supranuclear palsy and other
   46  neurodegenerative diseases.
   47         (g) Develop policy recommendations to help improve patient
   48  awareness of progressive supranuclear palsy and other
   49  neurodegenerative diseases.
   50         (h) Develop policy recommendations to help improve
   51  surveillance and detection of patients who may be at a higher
   52  risk of being diagnosed with progressive supranuclear palsy and
   53  other neurodegenerative diseases in licensed health care
   54  facilities, including hospitals, nursing homes, assisted living
   55  facilities, residential treatment facilities, and ambulatory
   56  surgical centers.
   57         (i) Develop policy recommendations relating to guidelines
   58  that affect the standard of care for patients with progressive
   59  supranuclear palsy and other neurodegenerative diseases.
   60         (j) Develop policy recommendations relating to providing
   61  patients and their families with written notice of increased
   62  risks of being diagnosed with progressive supranuclear palsy and
   63  other neurodegenerative diseases.
   64         (3)(a) The workgroup shall be composed of health care
   65  providers, family members or caretakers of patients who have
   66  been diagnosed with progressive supranuclear palsy and other
   67  neurodegenerative diseases, advocates, and other interested
   68  parties and associations.
   69         (b) The President of the Senate and the Speaker of the
   70  House of Representatives shall each appoint two members to the
   71  workgroup.
   72         (c) Members of the workgroup shall serve without
   73  compensation.
   74         (d) The State Surgeon General shall appoint the chair of
   75  the workgroup.
   76         (e) The chair of the workgroup may create subcommittees to
   77  help conduct research, schedule speakers on important subjects,
   78  and draft reports and policy recommendations.
   79         (f) Meetings of the workgroup may be held through
   80  teleconference or other electronic means.
   81         (4)(a) The Secretary of Health Care Administration shall
   82  submit an annual report detailing his or her findings and
   83  providing recommendations to the Governor, the President of the
   84  Senate, and the Speaker of the House of Representatives.
   85         (b) The Secretary of Health Care Administration shall
   86  submit a final report detailing his or her findings and
   87  providing recommendations to the Governor, the President of the
   88  Senate, and the Speaker of the House of Representatives by
   89  January 4, 2026.
   90         Section 3. This act shall take effect July 1, 2024.