Florida Senate - 2024                        COMMITTEE AMENDMENT
       Bill No. SB 186
       
       
       
       
       
       
                                Ì357376JÎ357376                         
       
                              LEGISLATIVE ACTION                        
                    Senate             .             House              
                                       .                                
                                       .                                
                                       .                                
                                       .                                
                                       .                                
       —————————————————————————————————————————————————————————————————




       —————————————————————————————————————————————————————————————————
       The Committee on Health Policy (Brodeur) recommended the
       following:
       
    1         Senate Amendment (with title amendment)
    2  
    3         Delete everything after the enacting clause
    4  and insert:
    5         Section 1. This act may be cited as the “Justo R. Cortes
    6  Progressive Supranuclear Palsy Act.”
    7         Section 2. Progressive supranuclear palsy and other
    8  neurodegenerative diseases policy committee.—
    9         (1)The State Surgeon General shall establish a progressive
   10  supranuclear palsy and other neurodegenerative diseases policy
   11  committee, a committee as defined in s. 20.03. The Department of
   12  Health shall provide staff and administrative support to the
   13  committee for purposes of carrying out its duties and
   14  responsibilities.
   15         (2)The committee shall do all of the following:
   16         (a)Identify the aggregate number of people in the state
   17  diagnosed with progressive supranuclear palsy or other
   18  neurodegenerative diseases annually.
   19         (b)Identify how data is collected regarding diagnoses of
   20  progressive supranuclear palsy or other neurodegenerative
   21  diseases and adverse health outcomes associated with such
   22  conditions.
   23         (c)Identify how progressive supranuclear palsy and other
   24  neurodegenerative diseases impact the lives of people in the
   25  state.
   26         (d)Identify the standard of care for the surveillance,
   27  detection, and treatment of progressive supranuclear palsy and
   28  other neurodegenerative diseases.
   29         (e)Identify emerging treatments, therapies, and research
   30  relating to progressive supranuclear palsy and other
   31  neurodegenerative diseases.
   32         (f)Develop a risk surveillance system to help health care
   33  providers identify patients who may be at a higher risk of
   34  developing progressive supranuclear palsy and other
   35  neurodegenerative diseases.
   36         (g)Develop policy recommendations to help improve patient
   37  awareness of progressive supranuclear palsy and other
   38  neurodegenerative diseases.
   39         (h)Develop policy recommendations to help improve
   40  surveillance and detection of patients who may be at a higher
   41  risk of being diagnosed with progressive supranuclear palsy and
   42  other neurodegenerative diseases in licensed health care
   43  facilities, including hospitals, nursing homes, assisted living
   44  facilities, residential treatment facilities, and ambulatory
   45  surgical centers.
   46         (i)Develop policy recommendations relating to guidelines
   47  that affect the standard of care for patients with progressive
   48  supranuclear palsy or other neurodegenerative diseases.
   49         (j)Develop policy recommendations relating to providing
   50  patients and their families with written notice of increased
   51  risks of being diagnosed with progressive supranuclear palsy and
   52  other neurodegenerative diseases.
   53         (3)The committee shall be composed of 20 members,
   54  including the State Surgeon General. Members of the committee
   55  must be appointed by September 1, 2024.
   56         (a)The State Surgeon General shall appoint health care
   57  providers, family members or caretakers of patients who have
   58  been diagnosed with progressive supranuclear palsy and other
   59  neurodegenerative diseases, advocates, and other interested
   60  parties and associations.
   61         (b)The President of the Senate and the Speaker of the
   62  House of Representatives shall each appoint two members to the
   63  committee.
   64         (c)Members of the committee shall serve without
   65  compensation and for the entirety of the committee’s existence.
   66         (d)The State Surgeon General shall appoint the chair of
   67  the committee.
   68         (e)The chair of the committee may create subcommittees to
   69  help conduct research, schedule speakers on important subjects,
   70  and draft reports and policy recommendations.
   71         (f)Meetings of the committee shall be held through
   72  teleconference or other electronic means. The committee shall
   73  meet for its initial meeting by October 1, 2024. Thereafter, the
   74  committee may meet upon the call of the chair or upon the
   75  request of a majority of its members. Notices for any scheduled
   76  meetings of the committee must be published in advance on the
   77  department’s website.
   78         (4)(a)The State Surgeon General shall submit a progress
   79  report detailing committee activities, as well as his or her
   80  findings and recommendations, to the Governor, the President of
   81  the Senate, and the Speaker of the House of Representatives by
   82  January 4, 2025. The report must be made available on the
   83  department’s website.
   84         (b)The State Surgeon General shall submit a final report
   85  detailing committee activities, as well as his or her findings
   86  and recommendations, to the Governor, the President of the
   87  Senate, and the Speaker of the House of Representatives by
   88  January 4, 2026. The report must be made available on the
   89  department’s website.
   90         (5)The committee shall sunset July 1, 2026, and this
   91  section is repealed on that date.
   92         Section 3. This act shall take effect July 1, 2024.
   93  
   94  ================= T I T L E  A M E N D M E N T ================
   95  And the title is amended as follows:
   96         Delete everything before the enacting clause
   97  and insert:
   98                        A bill to be entitled                      
   99         An act relating to a progressive supranuclear palsy
  100         and other neurodegenerative diseases policy committee;
  101         providing a short title; requiring the State Surgeon
  102         General to establish a progressive supranuclear palsy
  103         and other neurodegenerative diseases policy committee;
  104         requiring the Department of Health to provide staff
  105         and administrative support to the committee; providing
  106         for duties, membership, and meetings of the committee;
  107         requiring the State Surgeon General to submit a
  108         progress report and a final report by a specified date
  109         to the Governor and the Legislature; requiring the
  110         reports to be made available on the department’s
  111         website; providing for the expiration of the
  112         committee; providing an effective date.