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.