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53	53	STATE OF OKLAHOMA
54	54
55	55	1st Session of the 60th Legislature (2025)
56	56
57	57	SENATE BILL 225 By: Hicks
58	58
59	59
60	60
61	61
62	62
63	63	AS INTRODUCED
64	64
65	65	An Act relating to public health; establishing the
66	66	Oklahoma Rare Disease Advisory Council; stating
67	67	purpose and activities of the Council; providing
68	68	appointment procedures and membership requirements;
69	69	requiring submission of certain annual report;
70	70	prescribing certain meeting requirements; specifying
71	71	duration of membership terms; providing for filling
72	72	of vacancies; defining term; providing for
73	73	codification; and providing an effective date .
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78	78
79	79	BE IT ENACTED BY THE PEOPLE OF THE STATE OF OKLAHOMA:
80	80	SECTION 1. NEW LAW A new section of law to be codified
81	81	in the Oklahoma Statutes as Section 1 -451 of Title 63, unless there
82	82	is created a duplication in numbering, reads as follows:
83	83	A. The Oklahoma Rare Disease Advisory Council shall be
84	84	established within the State Department of Health in accordance with
85	85	this section.
86	86	B. The purpose of the Council shall be to provide gui dance and
87	87	recommendations to educate the public, the Legislature, and other
88	88	state agencies, as appropriate, on the needs of individuals with
89	89	rare diseases living in this state.
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141	141	C. The Council shall conduct the following activities to
142	142	benefit those impacte d by rare diseases in this state:
143	143	1. Convene public hearings, make inquiries, and solicit
144	144	comments from the general public in Oklahoma to assist the Council
145	145	with a first-year landscape or survey of the needs of rare disease
146	146	patients, caregivers, and provi ders in the state;
147	147	2. Provide testimony and comments on pending legislation a nd
148	148	regulations before the Legislature, if called, and other state
149	149	agencies that impact Oklahoma ’s rare disease community;
150	150	3. Consult with experts on rare diseases to develop pol icy
151	151	recommendations to improve patient access to, and quality of, rare
152	152	disease specialists, affordable and comprehensive health care
153	153	coverage, relevant diagnostics, timely treatment, and other needed
154	154	services;
155	155	4. Establish best practices and protocols to include in state
156	156	planning related to natural disasters, public health emergenc ies, or
157	157	other emergency declarations to enable continuity of care for rare
158	158	disease patients and ensure safeguards against discrimination for
159	159	rare disease patients are in place;
160	160	5. Identify areas of unmet need for research and opportunities
161	161	for collaboration with stakeholders and other state s’ rare disease
162	162	advisory councils that can inform future studies and work done by
163	163	the Council; and
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215	215	6. Research and identify best practices to reduce health
216	216	disparities and achieve health equity in the research, diagnosi s,
217	217	and treatment of rare disease in this state.
218	218	D. 1. The Council’s appointment process shall be conducted in
219	219	a transparent manner to provide interested individuals an
220	220	opportunity to apply for membership on the Council. All members of
221	221	the Council shall be full -time residents of this state as
222	222	practicable. Membership shall include a diverse set of stakeholders
223	223	representative of the geographic and population diversity of the
224	224	state.
225	225	2. The Governor shall appoint the chair of the Council not
226	226	later than December 1, 2025. The chair shall not hold any position
227	227	within the government of this state.
228	228	3. The chair shall appoint no fewer than thirteen (13) members,
229	229	including the following :
230	230	a. one representative of an academic research institution
231	231	in the state that receives any grant funding for rare
232	232	disease research,
233	233	b. one representative of the Oklahoma Health Care
234	234	Authority,
235	235	c. one representative of the Insurance Department,
236	236	d. one Registered Nurse or Advanced Practice Registered
237	237	Nurse licensed and practicing in t his state with
238	238	experience treating rare diseases,
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290	290	e. one physician practicing in this state with experience
291	291	treating rare diseases,
292	292	f. one hospital administrator, or his or her d esignee,
293	293	from a hospital in this state that provides care to
294	294	persons diagnosed with a rare disease,
295	295	g. at least two patients who have a rare disease,
296	296	h. at least one caregiver of a person with a rare
297	297	disease,
298	298	i. one representative of a rare disease patient
299	299	organization that operates in this state,
300	300	j. one representative of the biopha rmaceutical industry,
301	301	k. one representative of a health plan company, and
302	302	l. one member of the scientific community who is engaged
303	303	in rare disease research including, but not lim ited
304	304	to, a medical researcher with experience conducting
305	305	research on rare diseases .
306	306	4. The chair may appoint additional members on an ad hoc basis.
307	307	E. 1. The Council shall electronically submit a report to the
308	308	President Pro Tempore of the Senate, the Sp eaker of the House of
309	309	Representatives, and the Governor within one (1) year of
310	310	establishment of the Oklahoma Rare Disease Advisory Council and
311	311	annually thereafter. Prior to submission, a draft of the annual
312	312	report shall be made available for public commen t and discussed at
313	313	an open public meeting.
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365	365	2. Annual reports shall:
366	366	a. describe the activities and progress of the Council
367	367	under this section, and
368	368	b. provide recommendations to the Legislature and
369	369	Governor on ways to address the needs of people living
370	370	with rare diseases in this state.
371	371	F. 1. The initial meeting of the Council shal l occur no later
372	372	than February 1, 202 6. Thereafter, the Council shall meet no less
373	373	than quarterly.
374	374	2. Meetings of the Council shall be conducted in accordance
375	375	with the Oklahoma Open Meeting Act.
376	376	G. The Council shall:
377	377	1. Provide opportunities for the public to hear updates and
378	378	provide input into its work; and
379	379	2. Create and maintain a public website where meeting minutes,
380	380	notices of upcoming meetings, and public comments may be submitted.
381	381	H. 1. The Governor shall appoint the chair for an initial term
382	382	of three (3) years. At the end of the chair ’s initial three-year
383	383	term, and every two (2) years thereafter, members of the Council
384	384	shall elect, by a majority vote, a new chair.
385	385	2. Council members shall serve no longer than three (3) years,
386	386	except that, to facilitate a staggered rotation of members to retain
387	387	continuity and knowledge transfer, during the initial five (5) years
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439	439	after the establishment of the Council, members may serv e up to a
440	440	four-year term.
441	441	3. If a vacancy occurs, the Council, by a majority vote, shall
442	442	fill such vacancy in a timely manner and in compliance with
443	443	requirements set forth in subsection D of this section.
444	444	I. As used in this section, “rare disease”, sometimes called an
445	445	orphan disease, means a disease that affects fewer than two hundred
446	446	thousand (200,000) people in the United States.
447	447	SECTION 2. This act shall become effective November 1, 2025.
448	448
449	449	60-1-477 DC 12/30/2024 4:53:40 PM

Oklahoma 2025 Regular Session

Oklahoma Senate Bill SB225 Compare Versions