HB 1449

CS

CHAMBER ACTION

1	The Health Care General Committee recommends the following:
2
3	Council/Committee Substitute
4	Remove the entire bill and insert:
5	A bill to be entitled
6	An act relating to brain tumor research; creating s.
7	381.853, F.S.; providing legislative findings and intent;
8	requiring the Scripps Research Institute to work with the
9	University of Florida McKnight Brain Institute to develop
10	and maintain a brain tumor registry; providing that
11	individuals may choose not to be listed in the registry;
12	establishing the Florida Center for Brain Tumor Research
13	within the Scripps Research Institute; providing purpose
14	and goal of the center; requiring certain funds for brain
15	tumor research to be awarded on a competitive basis;
16	requiring the center to hold an annual brain tumor
17	biomedical technology summit; providing for clinical
18	trials and collaboration between certain entities;
19	requiring the center to submit an annual report to the
20	Governor, Legislature, and Secretary of Health; providing
21	for funding; establishing a scientific advisory council
22	and providing for composition and terms thereof; providing
23	rulemaking authority to the department; providing an
24	appropriation; providing an effective date.
25
26	Be It Enacted by the Legislature of the State of Florida:
27
28	Section 1.  Section 381.853, Florida Statutes, is created
29	to read:
30	381.853  Florida Center for Brain Tumor Research.--
31	(1)  The Legislature finds that each year an estimated
32	190,000 citizens of the United States are diagnosed with
33	cancerous and noncancerous brain tumors and that biomedical
34	research is the key to finding cures for these tumors. The
35	Legislature further finds that, although brain tumor research is
36	being conducted throughout the state, there is a lack of
37	coordinated efforts among researchers and health care providers.
38	Therefore, the Legislature finds that there is a significant
39	need for a coordinated effort to achieve the goal of curing
40	brain tumors. The Legislature further finds that the biomedical
41	technology sector meets the criteria of a high-impact sector,
42	pursuant to s. 288.108(6), having a high importance to the
43	state's economy with a significant potential for growth and
44	contribution to our universities and quality of life.
45	(2)  It is the intent of the Legislature to establish a
46	coordinated effort among the state's public and private
47	universities and hospitals and the biomedical industry to
48	discover brain tumor cures and develop brain tumor treatment
49	modalities. Moreover, it is the intent of the Legislature to
50	expand the state's economy by attracting biomedical researchers
51	and research companies to the state.
52	(3)  The Scripps Research Institute shall work with the
53	University of Florida McKnight Brain Institute to develop and
54	maintain a brain tumor registry that is an automated,
55	electronic, and centralized database of individuals with brain
56	tumors. The individual, or the parent or guardian of the
57	individual if the individual is a minor, may refuse to
58	participate in the brain tumor registry by signing a form
59	obtained from the Department of Health or from the health care
60	practitioner or entity that provides brain tumor care or
61	treatment, which indicates that the individual does not wish to
62	be included in the registry. The decision to not participate in
63	the registry must be noted in the registry.
64	(4)  There is established within the Scripps Research
65	Institute the Florida Center for Brain Tumor Research.
66	(a)  The purpose of the center is to provide a central
67	repository for brain tumor biopsies from individuals throughout
68	the state, improve and monitor brain tumor biomedical research
69	programs within the state, facilitate funding opportunities, and
70	foster improved technology transfer of brain tumor research
71	findings into clinical trials and widespread public use.
72	(b)  The goal of the center is to find cures for brain
73	tumors.
74	(c)  Funds specifically appropriated by the Legislature for
75	peer-reviewed brain tumor research shall be awarded on a
76	competitive basis by means of a grant process developed by the
77	center.
78	(d)  The center shall hold an annual brain tumor biomedical
79	technology summit in the state to which scientists conducting
80	basic peer-reviewed scientific research from the state's public
81	and private universities, teaching hospitals, and for-profit and
82	nonprofit institutions are invited to share biomedical research
83	findings in order to expedite the discovery of cures. Summit
84	attendees shall cover the costs of such attendance or obtain
85	sponsorship for such attendance.
86	(e)  The center shall encourage clinical trials in the
87	state on research that holds the promise of curing brain tumors.
88	The center shall facilitate partnerships between researchers,
89	physicians, clinicians, and hospitals for the purpose of sharing
90	new techniques and new research findings, as well as
91	coordinating the voluntary donation of brain tumor biopsies.
92	(f)  The center shall facilitate the formation of
93	partnerships between researchers, physicians, clinicians, and
94	hospitals in the state.
95	(g)  The center shall submit an annual report to the
96	Governor, the President of the Senate, the Speaker of the House
97	of Representatives, and the Secretary of Health no later than
98	January 15 that contains recommendations for legislative changes
99	necessary to foster a positive climate for the pursuit of brain
100	tumor research and the development of treatment modalities in
101	the state.
102	(h)  The center shall be funded through private, state, and
103	federal sources.
104	(5)  There is established within the center a scientific
105	advisory council that includes biomedical researchers,
106	physicians, clinicians, and representatives from public and
107	private universities and hospitals. The council shall meet at
108	least annually.
109	(a)  The council shall consist of:
110	1.  Two members from the University of Florida McKnight
111	Brain Institute, appointed by the Governor.
112	2.  Two members from the Scripps Research Institute, one of
113	whom must have expertise in basic brain tumor research,
114	appointed by the Speaker of the House of Representatives.
115	3.  Two members from other public and private state
116	universities and institutions directly involved in brain tumor
117	research, appointed by the President of the Senate.
118	4.  Two physicians directly involved in the treatment of
119	brain tumor patients, appointed by the Secretary of Health.
120	(b)  Council members shall serve staggered 4-year terms.
121	(c)  Council members shall serve without compensation, and
122	each organization represented shall cover all expenses of its
123	representative.
124	(6)  The Department of Health may adopt, repeal, and amend
125	rules pursuant to ss. 120.536(1) and 120.54 relating to the
126	center and the administration of the brain tumor registry. Such
127	rules may include procedures for participating in brain tumor
128	research and for providing access to confidential information
129	necessary for brain tumor investigations. For the purposes of
130	the brain tumor registry, the rules may include procedures for a
131	health care practitioner and researcher to obtain authorization
132	to use the brain tumor registry and methods for an individual or
133	guardian to elect not to participate in the brain tumor
134	registry.
135	Section 2.  The sum of $4 million is appropriated from the
136	General Revenue Fund to the Florida Center for Brain Tumor
137	Research for the 2006-2007 fiscal year for the purpose of
138	funding brain tumor research and funding for the procurement of
139	brain tumor biopsies. From the total funds appropriated, an
140	amount of up to 10 percent may be used for administrative costs.
141	Section 3.  This act shall take effect July 1, 2006.

CODING: Words stricken are deletions; words underlined are additions.