Florida Senate - 2021 PROPOSED COMMITTEE SUBSTITUTE Bill No. CS for SB 272 Ì211898YÎ211898 576-02379-21 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. 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 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. 65 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.