Florida Senate - 2021 SB 272 By Senator Baxley 12-00121B-21 2021272__ Page 1 of 4 CODING: Words stricken are deletions; words underlined are additions. A bill to be entitled 1

An act relating to the Rare Disease Advisory Council; 2 creating s. 381.99, F.S.; creating the advisory 3 council adjunct to the Department of Health; 4 specifying the purpose of the advisory council; 5 providing for staff and administrative support; 6 defining the term “rare disease”; specifying 7 application of state law governing the establishment 8 of advisory councils; prescribing the composition of 9 the advisory council; providing for initial 10 appointments to the advisory council by a specified 11 date; providing organizational and other meeting 12 requirements for the advisory council; prescribing 13 duties and responsibilities of the advisory council; 14 providing an effective date. 15 16 Be It Enacted by the Legislature of the State of Florida: 17 18

Section

Section 381.99, Florida Statutes, is created to 19 read: 20 381.99 Rare Disease Advisory Council.— 21

(1) The Rare Disease Advisory Council, an advisory council 22 as defined in s. 20.03(7), is created adjunct to the Department 23 of Health for the purpose of providing recommendations on ways 24 to improve health outcomes for individuals residing in this 25 state who have a rare disease. The department shall provide 26 staff and administrative support for the advisory council in the 27 carrying out of its duties and responsibilities.

For purposes of 28 this section, the term “rare disease” means a condition that 29 Florida Senate - 2021 SB 272 12-00121B-21 2021272__ Page 2 of 4 CODING: Words stricken are deletions; words underlined are additions. affects fewer than 200,000 people in the United States. Except 30 as otherwise provided in this section, the advisory council 31 shall operate in a manner consistent with s. 20.052. 32

(2) The advisory council is composed of the following 33 members appointed by the Governor: 34 (

a) A representative of the Department of Health. 35 (

b) A representative of the Agency for Health Care 36 Administration. 37 (

c) A representative of the Office of Insurance Regulation. 38 (

d) A representative of the Department of Education. 39 (

e) Two representatives from academic research institutions 40 in this state which receive any grant funding for research 41 regarding rare diseases. 42 (

f) One geneticist practicing in this state. 43 (

g) One registered nurse or advanced practice registered 44 nurse who is licensed and practicing in this state with 45 experience treating rare diseases. 46 (

h) Two physicians who are licensed and practicing in this 47 state with experience treating rare diseases. 48 (

i) One hospital administrator from a hospital in this 49 state which provides care to individuals diagnosed with rare 50 diseases. 51 (

j) Two individuals who are 18 years of age or older who 52 have a rare disease. 53 (

k) Two individuals who are caregivers of an individual 54 with a rare disease. 55 (

l) Two representatives of organizations operating in this 56 state which provide care or other support for individuals with 57 rare diseases. 58 Florida Senate - 2021 SB 272 12-00121B-21 2021272__ Page 3 of 4 CODING: Words stricken are deletions; words underlined are additions. (

m) A pharmacist who is licensed and practicing in this 59 state who has experience with drugs that are used to treat rare 60 diseases. 61 (

n) A representative of the biotechnology industry. 62 (

o) A representative of health insurance companies. 63 64 Any vacancy on the advisory council shall be filled in the same 65 manner as the original appointment. 66

(3) The initial members of the advisory council shall be 67 appointed by September 1, 2021. Each member shall be appointed 68 to a 4-year term of office. However, in order to achieve 69 staggered terms, the initial members appointed pursuant to 70 paragraphs (2)(a)-(

i) shall be appointed to a 2-year term. The 71 Governor shall designate a chair and vice chair of the advisory 72 council from among its membership. The advisory council shall 73 meet for its initial meeting by October 1, 2021. Thereafter, the 74 advisory council may meet upon the call of the chair or upon the 75 request of a majority of its members. The advisory council may 76 meet via teleconferencing or other electronic means. Notices for 77 any scheduled meetings of the advisory council must be published 78 in advance on the department’s website. 79

(4) The advisory council shall: 80 (

a) Consult with experts on rare diseases and solicit 81 public comment to assist in developing recommendations on 82 improving the treatment of rare diseases in this state. 83 (

b) Develop recommended strategies for academic research 84 institutions in this state to facilitate continued research on 85 rare diseases. 86 (

c) Develop recommended strategies for health care 87 Florida Senate - 2021 SB 272 12-00121B-21 2021272__ Page 4 of 4 CODING: Words stricken are deletions; words underlined are additions. providers to be informed on how to more efficiently recognize 88 and diagnose rare diseases in order to effectively treat 89 patients. The advisory council shall provide such strategies to 90 the Department of Health for publication on the department’s 91 website. 92 (

d) Establish a method to securely hold and distribute 93 funds solicited by the advisory council’s chair and vice chair 94 to be used solely for purposes related to the advisory council’s 95 mission, including, but not limited to, advancing awareness and 96 the treatment of rare diseases. 97 (

e) By July 1 of each year, beginning in 2022, submit a 98 report to the Governor and the State Surgeon General which 99 describes the activities of the advisory council in the past 100 year and its findings and recommendations regarding rare disease 101 research and care. Additionally, the report must be made 102 available on the department’s website. 103

Section 2. This act shall take effect July 1, 2021. 104