F L O R I D A H O U S E O F R E P R E S E N T A T I V E S HBCS/HB 1373 2021 A bill to be entitled An act relating to the Rare Disease Advisory Council;
20.03(7), is created adjunct to the Department of Health for the purpose of providing recommendations on ways to improve health outcomes for individuals residing in thisthe state Page 1 of 5 CODING:
hb1373-00hb1373-01-c1 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S HBCS/HB 1373 2021 state who have a rare disease.
(2) The advisory council is composed of the following membersmembers: appointed by the Governor:
(a) AAs representativeappointed ofby the DepartmentGovernor: of Health.
(b)1. A representative of the Agency for Health Care Administration.
(c) A representative of the OfficeDepartment of InsuranceHealth. Regulation.
(d)2. A representative of the Department of Education.
(e)A Tworepresentative representativesof fromthe academicAgency research institutions in this state which receive any grant funding for researchHealth regardingCare rareAdministration. diseases.
(f)3. One geneticist practicing in this state.
(g)A Onerepresentative registeredof nursethe orOffice advancedof practiceInsurance registeredRegulation. nurse who is licensed and practicing in this state with experience treating rare diseases.
(h)4. Two physicians who are licensed and practicing in this state with experience treating rare diseases.
(i)A Onerepresentative hospitalof administratorthe fromDepartment a hospital in this Page 2 of 5Education. CODING:
5.
One geneticist practicing in the state.
6.
One registered nurse or advanced practice registered nurse who is licensed and practicing in the state with experience in treating rare diseases.
7.
One hospital administrator from a hospital in the state which provides care to individuals diagnosed with rare diseases.
8.
A pharmacist who is licensed and practicing in the state who has experience with drugs that are used in the treatment of rare diseases.
9.
A representative of the biotechnology industry.
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hb1373-00hb1373-01-c1 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S HBCS/HB 1373 2021 state10. which provides care to individuals diagnosed with rare diseases.
(j)A Tworepresentative individuals who are 18 years of agehealth orinsurance oldercompanies. who have a rare disease.
(k)(b) TwoAs individualsappointed whoby arethe caregiversPresident of anthe individualSenate: with a rare disease.
(l)1. Two representatives of organizations operating in this state which provide care or other support for individuals with rare diseases.
(m) A pharmacistrepresentative whofrom isan licensedacademic andresearch practicinginstitution in thisthe state whowhich hasreceives experiencegrant withfunding drugsfor thatresearch areregarding used to treat rare diseases.
(n)2. A representative of the biotechnology industry.
(o) A representativephysician ofwho healthis insurancelicensed companies.under chapter 458 or chapter 459 and practicing in the state with experience in treating rare diseases.
Any3. vacancy on the advisory council shall be filled in the same manner as the original appointment.
(3)An Theindividual initialwho membersis of18 theyears advisoryof councilage shallor beolder appointedwho byhas Septembera 1,rare 2021.disease.
Each4. member shall be appointed to a 4-year term of office.
However,An inindividual orderwho tois achievea staggeredcaregiver terms,of thean initialindividual memberswith appointed pursuant to paragraphs (2)(a)-(i) shall be appointed to a 2-yearrare term.disease.
The5. Governor shall designate a chair and vice chair of the advisory council from among its membership.
TheA advisoryrepresentative councilof shallan meetorganization foroperating itsin initialthe meetingstate bywhich Octoberprovides 1,care 2021.or other support to individuals with rare diseases.
Thereafter,(c) theAs Pageappointed 3by the Speaker of 5the CODING:House of Representatives:
1.
A representative from an academic research institution in the state which receives grant funding for research regarding rare diseases.
2.
A physician who is licensed under chapter 458 or chapter 459 and practicing in the state with experience in treating rare diseases.
3.
An individual who is 18 years of age or older who has a rare disease.
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hb1373-00hb1373-01-c1 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S HBCS/HB 1373 2021 advisory4. council may meet upon the call of the chair or upon the request of a majority of its members.
An individual who is a caregiver of an individual with a rare disease.
5.
A representative of organizations in the state which provide care or other support to individuals with rare diseases.
81 Any vacancy on the advisory council must be filled in the same manner as the original appointment.
(3) The initial members of the advisory council must be appointed by September 1, 2021.
Each member must be appointed to a 4-year term of office.
However, in order to achieve staggered terms, each of the initial members appointed pursuant to paragraph (2)(a) must be appointed to a 2-year term.
The Governor shall designate a chair and vice chair of the advisory council from among its membership.
The advisory council shall meet for its initial meeting by October 1, 2021.
Thereafter, the advisory council may meet upon the call of the chair or upon the request of a majority of its members.
(a) Consult with experts on rare diseases and solicit public comment to assist in developing recommendations on improving the treatment of rare diseases in thisthe state.
(b) Develop recommended strategies for academic research institutionsPage in4 thisof state5 toCODING: facilitate continued research on rare diseases.
Words stricken are deletions;
words underlined are additions.
hb1373-01-c1 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S CS/HB 1373 2021 institutions in the state to facilitate continued research on rare diseases.
(e) By July 1 of each year, beginning in 2022, submit a report to the Governor and the State Surgeon General which Pagedescribes 4the activities of 5the CODING:advisory council in the past year and its findings and recommendations regarding rare disease research and care.
Words stricken are deletions;
words underlined are additions.
hb1373-00 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S HB 1373 2021 describes the activities of the advisory council in the past year and its findings and recommendations regarding rare disease research and care.
hb1373-00hb1373-01-c1