Florida Senate - 2021                       CS for CS for SB 272
       
       
        
       By the Committees on Appropriations; and Health Policy; and
       Senator Baxley
       
       
       
       
       576-02734-21                                           2021272c2
    1                        A bill to be entitled                      
    2         An act relating to the Rare Disease Advisory Council;
    3         creating s. 381.99, F.S.; creating the advisory
    4         council adjunct to the Department of Health;
    5         specifying the purpose of the advisory council;
    6         providing for staff and administrative support;
    7         defining the term “rare disease”; specifying
    8         application of state law governing the establishment
    9         of advisory councils; prescribing the composition of
   10         the advisory council; providing for initial
   11         appointments to the advisory council by a specified
   12         date; providing organizational and other meeting
   13         requirements for the advisory council; prescribing
   14         duties and responsibilities of the advisory council;
   15         providing an effective date.
   16          
   17  Be It Enacted by the Legislature of the State of Florida:
   18  
   19         Section 1. Section 381.99, Florida Statutes, is created to
   20  read:
   21         381.99 Rare Disease Advisory Council.—
   22         (1) The Rare Disease Advisory Council, an advisory council
   23  as defined in s. 20.03(7), is created adjunct to the Department
   24  of Health for the purpose of providing recommendations on ways
   25  to improve health outcomes for individuals residing in this
   26  state who have a rare disease. The department shall provide
   27  staff and administrative support for the advisory council in the
   28  carrying out of its duties and responsibilities. For purposes of
   29  this section, the term “rare disease” means a condition that
   30  affects fewer than 200,000 people in the United States. Except
   31  as otherwise provided in this section, the advisory council
   32  shall operate in a manner consistent with s. 20.052.
   33         (2) The advisory council is composed of the following
   34  members:
   35         (a)As appointed by the Governor:
   36         1. A representative of the Department of Health.
   37         2.A representative of the Agency for Health Care
   38  Administration.
   39         3.A representative of the Office of Insurance Regulation.
   40         4.A representative of the Department of Education.
   41         5.One geneticist practicing in this state.
   42         6.One registered nurse or advanced practice registered
   43  nurse who is licensed and practicing in this state with
   44  experience in treating rare diseases.
   45         7.One hospital administrator from a hospital in this state
   46  which provides care to individuals diagnosed with rare diseases.
   47         8.A pharmacist who is licensed and practicing in this
   48  state who has experience with drugs that are used in the
   49  treatment of rare diseases.
   50         9.A representative of the biotechnology industry.
   51         10.A representative of health insurance companies.
   52         (b) As appointed by the President of the Senate:
   53         1.A representative from an academic research institution
   54  in this state which receives grant funding for research
   55  regarding rare diseases.
   56         2.A physician who is licensed under chapter 458 or chapter
   57  459 and practicing in this state with experience in treating
   58  rare diseases.
   59         3.An individual who is 18 years of age or older who has a
   60  rare disease.
   61         4.An individual who is a caregiver of an individual with a
   62  rare disease.
   63         5.A representative of an organization operating in this
   64  state which provides care or other support to individuals with
   65  rare diseases.
   66         (c) As appointed by the Speaker of the House of
   67  Representatives:
   68         1.A representative from an academic research institution
   69  in this state which receives grant funding for research
   70  regarding rare diseases.
   71         2.A physician who is licensed under chapter 458 or chapter
   72  459 and practicing in this state with experience in treating
   73  rare diseases.
   74         3.An individual who is 18 years of age or older who has a
   75  rare disease.
   76         4.An individual who is a caregiver of an individual with a
   77  rare disease.
   78         5.A representative of organizations in this state which
   79  provide care or other support to individuals with rare diseases.
   80  
   81  Any vacancy on the advisory council must be filled in the same
   82  manner as the original appointment.
   83         (3) The initial members of the advisory council must be
   84  appointed by September 1, 2021. Each member must be appointed to
   85  a 4-year term of office. However, in order to achieve staggered
   86  terms, each of the initial members appointed pursuant to
   87  paragraph (2)(a) must be appointed to a 2-year term. The
   88  Governor shall designate a chair and vice chair of the advisory
   89  council from among its membership. The advisory council shall
   90  meet for its initial meeting by October 1, 2021. Thereafter, the
   91  advisory council may meet upon the call of the chair or upon the
   92  request of a majority of its members. The advisory council may
   93  meet via teleconferencing or other electronic means. Notices for
   94  any scheduled meetings of the advisory council must be published
   95  in advance on the department’s website.
   96         (4) The advisory council shall:
   97         (a) Consult with experts on rare diseases and solicit
   98  public comment to assist in developing recommendations on
   99  improving the treatment of rare diseases in this state.
  100         (b) Develop recommended strategies for academic research
  101  institutions in this state to facilitate continued research on
  102  rare diseases.
  103         (c) Develop recommended strategies for health care
  104  providers to be informed on how to more efficiently recognize
  105  and diagnose rare diseases in order to effectively treat
  106  patients. The advisory council shall provide such strategies to
  107  the Department of Health for publication on the department’s
  108  website.
  109         (d) Provide input and feedback in writing to the
  110  department, the Medicaid program, and other state agencies on
  111  matters that affect people who have been diagnosed with rare
  112  diseases, including, but not limited to, pandemic or natural
  113  disaster preparedness and response.
  114         (e) By July 1 of each year, beginning in 2022, submit a
  115  report to the Governor and the State Surgeon General which
  116  describes the activities of the advisory council in the past
  117  year and its findings and recommendations regarding rare disease
  118  research and care. Additionally, the report must be made
  119  available on the department’s website.
  120         Section 2. This act shall take effect July 1, 2021.