Florida Senate - 2024                              CS for SB 186
       
       
        
       By the Committee on Health Policy; and Senators Brodeur, Pizzo,
       Wright, Boyd, Burgess, Rouson, Hutson, Davis, Ingoglia, and
       Garcia
       
       
       
       588-01774-24                                           2024186c1
    1                        A bill to be entitled                      
    2         An act relating to a progressive supranuclear palsy
    3         and other neurodegenerative diseases policy committee;
    4         providing a short title; requiring the State Surgeon
    5         General to establish a progressive supranuclear palsy
    6         and other neurodegenerative diseases policy committee;
    7         requiring the Department of Health to provide staff
    8         and administrative support to the committee; providing
    9         for duties, membership, and meetings of the committee;
   10         requiring the State Surgeon General to submit a
   11         progress report and a final report by a specified date
   12         to the Governor and the Legislature; requiring the
   13         reports to be made available on the department’s
   14         website; providing for the expiration of the
   15         committee; providing an effective date.
   16          
   17  Be It Enacted by the Legislature of the State of Florida:
   18  
   19         Section 1. This act may be cited as the “Justo R. Cortes
   20  Progressive Supranuclear Palsy Act.”
   21         Section 2. Progressive supranuclear palsy and other
   22  neurodegenerative diseases policy committee.—
   23         (1)The State Surgeon General shall establish a progressive
   24  supranuclear palsy and other neurodegenerative diseases policy
   25  committee, a committee as defined in s. 20.03, Florida Statutes.
   26  The Department of Health shall provide staff and administrative
   27  support to the committee for purposes of carrying out its duties
   28  and responsibilities.
   29         (2)The committee shall do all of the following:
   30         (a)Identify the aggregate number of people in the state
   31  diagnosed with progressive supranuclear palsy or other
   32  neurodegenerative diseases annually.
   33         (b)Identify how data is collected regarding diagnoses of
   34  progressive supranuclear palsy or other neurodegenerative
   35  diseases and adverse health outcomes associated with such
   36  conditions.
   37         (c)Identify how progressive supranuclear palsy and other
   38  neurodegenerative diseases impact the lives of people in the
   39  state.
   40         (d)Identify the standard of care for the surveillance,
   41  detection, and treatment of progressive supranuclear palsy and
   42  other neurodegenerative diseases.
   43         (e)Identify emerging treatments, therapies, and research
   44  relating to progressive supranuclear palsy and other
   45  neurodegenerative diseases.
   46         (f)Develop a risk surveillance system to help health care
   47  providers identify patients who may be at a higher risk of
   48  developing progressive supranuclear palsy and other
   49  neurodegenerative diseases.
   50         (g)Develop policy recommendations to help improve patient
   51  awareness of progressive supranuclear palsy and other
   52  neurodegenerative diseases.
   53         (h)Develop policy recommendations to help improve
   54  surveillance and detection of patients who may be at a higher
   55  risk of being diagnosed with progressive supranuclear palsy and
   56  other neurodegenerative diseases in licensed health care
   57  facilities, including hospitals, nursing homes, assisted living
   58  facilities, residential treatment facilities, and ambulatory
   59  surgical centers.
   60         (i)Develop policy recommendations relating to guidelines
   61  that affect the standard of care for patients with progressive
   62  supranuclear palsy or other neurodegenerative diseases.
   63         (j)Develop policy recommendations relating to providing
   64  patients and their families with written notice of increased
   65  risks of being diagnosed with progressive supranuclear palsy and
   66  other neurodegenerative diseases.
   67         (3)The committee shall be composed of 20 members,
   68  including the State Surgeon General. Members of the committee
   69  must be appointed by September 1, 2024.
   70         (a)The State Surgeon General shall appoint health care
   71  providers, family members or caretakers of patients who have
   72  been diagnosed with progressive supranuclear palsy and other
   73  neurodegenerative diseases, advocates, and other interested
   74  parties and associations.
   75         (b)The President of the Senate and the Speaker of the
   76  House of Representatives shall each appoint two members to the
   77  committee.
   78         (c)Members of the committee shall serve without
   79  compensation and for the entirety of the committee’s existence.
   80         (d)The State Surgeon General shall appoint the chair of
   81  the committee.
   82         (e)The chair of the committee may create subcommittees to
   83  help conduct research, schedule speakers on important subjects,
   84  and draft reports and policy recommendations.
   85         (f)Meetings of the committee shall be held through
   86  teleconference or other electronic means. The committee shall
   87  meet for its initial meeting by October 1, 2024. Thereafter, the
   88  committee may meet upon the call of the chair or upon the
   89  request of a majority of its members. Notices for any scheduled
   90  meetings of the committee must be published in advance on the
   91  department’s website.
   92         (4)(a)The State Surgeon General shall submit a progress
   93  report detailing committee activities, as well as his or her
   94  findings and recommendations, to the Governor, the President of
   95  the Senate, and the Speaker of the House of Representatives by
   96  January 4, 2025. The report must be made available on the
   97  department’s website.
   98         (b)The State Surgeon General shall submit a final report
   99  detailing committee activities, as well as his or her findings
  100  and recommendations, to the Governor, the President of the
  101  Senate, and the Speaker of the House of Representatives by
  102  January 4, 2026. The report must be made available on the
  103  department’s website.
  104         (5)The committee shall sunset July 1, 2026, and this
  105  section is repealed on that date.
  106         Section 3. This act shall take effect July 1, 2024.