Florida Senate - 2021              PROPOSED COMMITTEE SUBSTITUTE
       Bill No. CS for SB 272
       Proposed Committee Substitute by the Committee on Appropriations
       (Appropriations Subcommittee on Health and Human Services)
    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.
   17  Be It Enacted by the Legislature of the State of Florida:
   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 appointed by the Governor:
   35         (a) A representative of the Department of Health.
   36         (b) A representative of the Agency for Health Care
   37  Administration.
   38         (c) A representative of the Office of Insurance Regulation.
   39         (d) A representative of the Department of Education.
   40         (e) Two representatives from academic research institutions
   41  in this state which receive any grant funding for research
   42  regarding rare diseases.
   43         (f) One geneticist practicing in this state.
   44         (g) One registered nurse or advanced practice registered
   45  nurse who is licensed and practicing in this state with
   46  experience treating rare diseases.
   47         (h)Two physicians who are licensed under chapter 458 or
   48  chapter 459 and practicing in this state with experience
   49  treating rare diseases.
   50         (i) One hospital administrator from a hospital in this
   51  state which provides care to individuals diagnosed with rare
   52  diseases.
   53         (j) Two individuals who are 18 years of age or older who
   54  have a rare disease.
   55         (k) Two individuals who are caregivers of an individual
   56  with a rare disease.
   57         (l) Two representatives of organizations operating in this
   58  state which provide care or other support for individuals with
   59  rare diseases.
   60         (m) A pharmacist who is licensed and practicing in this
   61  state who has experience with drugs that are used to treat rare
   62  diseases.
   63         (n) A representative of the biotechnology industry.
   64         (o) A representative of health insurance companies.
   66  Any vacancy on the advisory council shall be filled in the same
   67  manner as the original appointment.
   68         (3) The initial members of the advisory council shall be
   69  appointed by September 1, 2021. Each member shall be appointed
   70  to a 4-year term of office. However, in order to achieve
   71  staggered terms, the initial members appointed pursuant to
   72  paragraphs (2)(a)-(i) shall be appointed to a 2-year term. The
   73  Governor shall designate a chair and vice chair of the advisory
   74  council from among its membership. The advisory council shall
   75  meet for its initial meeting by October 1, 2021. Thereafter, the
   76  advisory council may meet upon the call of the chair or upon the
   77  request of a majority of its members. The advisory council may
   78  meet via teleconferencing or other electronic means. Notices for
   79  any scheduled meetings of the advisory council must be published
   80  in advance on the department’s website.
   81         (4) The advisory council shall:
   82         (a) Consult with experts on rare diseases and solicit
   83  public comment to assist in developing recommendations on
   84  improving the treatment of rare diseases in this state.
   85         (b) Develop recommended strategies for academic research
   86  institutions in this state to facilitate continued research on
   87  rare diseases.
   88         (c) Develop recommended strategies for health care
   89  providers to be informed on how to more efficiently recognize
   90  and diagnose rare diseases in order to effectively treat
   91  patients. The advisory council shall provide such strategies to
   92  the Department of Health for publication on the department’s
   93  website.
   94         (d) Provide input and feedback in writing to the
   95  department, the Medicaid program, and other state agencies on
   96  matters that affect people who have been diagnosed with rare
   97  diseases, including, but not limited to, pandemic or natural
   98  disaster preparedness and response.
   99         (e) By July 1 of each year, beginning in 2022, submit a
  100  report to the Governor and the State Surgeon General which
  101  describes the activities of the advisory council in the past
  102  year and its findings and recommendations regarding rare disease
  103  research and care. Additionally, the report must be made
  104  available on the department’s website.
  105         Section 2. This act shall take effect July 1, 2021.