Old	New	Differences
1	1
2	2
3	3
4	4	Req. No. 2981 Page 1 1
5	5	2
6	6	3
7	7	4
8	8	5
9	9	6
10	10	7
11	11	8
12	12	9
13	13	10
14	14	11
15	15	12
16	16	13
17	17	14
18	18	15
19	19	16
20	20	17
21	21	18
22	22	19
23	23	20
24	24	21
25	25	22
26	26	23
27	27	24
28	28	1
29	29	2
30	30	3
31	31	4
32	32	5
33	33	6
34	34	7
35	35	8
36	36	9
37	37	10
38	38	11
39	39	12
40	40	13
41	41	14
42	42	15
43	43	16
44	44	17
45	45	18
46	46	19
47	47	20
48	48	21
49	49	22
50	50	23
51	51	24
52	52
53	53	STATE OF OKLAHOMA
54	54
55	55	2nd Session of the 59th Legislature (2024)
56	56
57	57	SENATE BILL 1772 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	specifying duration of membership terms; providing
71	71	for filling of vacancies; defining term; providing
72	72	for codification; and providing an effective date.
73	73
74	74
75	75
76	76
77	77	BE IT ENACTED BY THE PEOPLE OF THE STATE OF OKLAHOMA:
78	78	SECTION 1. NEW LAW A new section of law to be codified
79	79	in the Oklahoma Statutes as Section 1-451 of Title 63, unless there
80	80	is created a duplication in numberin g, reads as follows:
81	81	A. The Oklahoma Rare Disease Advisory Council shall be
82	82	established within the State Department of Health in accordance with
83	83	this section.
84	84	B. The purpose of the Council shall be to provide guidance and
85	85	recommendations to educate the public, the Legislature , and other
86	86	state agencies, as appropriate, on the needs of individuals with
87	87	rare diseases living in this state.
88	88
89	89
90	90	Req. No. 2981 Page 2 1
91	91	2
92	92	3
93	93	4
94	94	5
95	95	6
96	96	7
97	97	8
98	98	9
99	99	10
100	100	11
101	101	12
102	102	13
103	103	14
104	104	15
105	105	16
106	106	17
107	107	18
108	108	19
109	109	20
110	110	21
111	111	22
112	112	23
113	113	24
114	114	1
115	115	2
116	116	3
117	117	4
118	118	5
119	119	6
120	120	7
121	121	8
122	122	9
123	123	10
124	124	11
125	125	12
126	126	13
127	127	14
128	128	15
129	129	16
130	130	17
131	131	18
132	132	19
133	133	20
134	134	21
135	135	22
136	136	23
137	137	24
138	138
139	139	C. The Council shall conduct the following activities to
140	140	benefit those impacted by rare diseases in this state:
141	141	1. Convene public hearings, make inquiries, and solicit
142	142	comments from the general public in Oklahoma to assist the Council
143	143	with a first-year landscape or survey of the needs of rare disease
144	144	patients, caregivers, and providers in the state ;
145	145	2. Provide testimony and comments on pending legislation and
146	146	regulations before the Legislature , if called, and other state
147	147	agencies that impact Oklahoma ’s rare disease community ;
148	148	3. Consult with experts on rare diseases to develop policy
149	149	recommendations to improve patient acc ess to, and quality of, rare
150	150	disease specialists, affordable and comprehensive health care
151	151	coverage, relevant diagnostics, timely treatment, and other needed
152	152	services;
153	153	4. Establish best practices and proto cols to include in state
154	154	planning related to natural disasters, public health emergencies, or
155	155	other emergency declarations to enable continuity of care for rare
156	156	disease patients and ensure safeguards against discrimination for
157	157	rare disease patients are in place ;
158	158	5. Identify areas of unmet need for resear ch and opportunities
159	159	for collaboration across stakeholders and other state rare disease
160	160	advisory councils that can inform future studies and work done by
161	161	the Council; and
162	162
163	163
164	164	Req. No. 2981 Page 3 1
165	165	2
166	166	3
167	167	4
168	168	5
169	169	6
170	170	7
171	171	8
172	172	9
173	173	10
174	174	11
175	175	12
176	176	13
177	177	14
178	178	15
179	179	16
180	180	17
181	181	18
182	182	19
183	183	20
184	184	21
185	185	22
186	186	23
187	187	24
188	188	1
189	189	2
190	190	3
191	191	4
192	192	5
193	193	6
194	194	7
195	195	8
196	196	9
197	197	10
198	198	11
199	199	12
200	200	13
201	201	14
202	202	15
203	203	16
204	204	17
205	205	18
206	206	19
207	207	20
208	208	21
209	209	22
210	210	23
211	211	24
212	212
213	213	6. Research and identify best prac tices to reduce health
214	214	disparities and achieve health equity in the research, diagnosis ,
215	215	and treatment of rare disease in this state.
216	216	D. 1. The Council’s appointment process shall be conducted in
217	217	a transparent manner to provide interested individuals an
218	218	opportunity to apply for membership on the Council. All members of
219	219	the Council shall be full -time residents of this state as
220	220	practicable. Membership shall include a diverse set of stakeholders
221	221	representative of the geographic and population diversity of the
222	222	state.
223	223	2. The Governor shall appoint the chair of the Council not
224	224	later than December 1, 2024 . The chair shall not hold any position
225	225	within the government of this state.
226	226	3. The Chair shall appoint no fewer than seventeen (17)
227	227	members, including the following :
228	228	a. one representative of an academic research institution
229	229	in the state that receives any grant funding for rare
230	230	disease research,
231	231	b. one representative of the State Department of Health ’s
232	232	Office of Minority Health and Health Equity or
233	233	successor division,
234	234	c. one representative of the Oklahoma Health Care
235	235	Authority,
236	236	d. one representative of the Insurance Department,
237	237
238	238
239	239	Req. No. 2981 Page 4 1
240	240	2
241	241	3
242	242	4
243	243	5
244	244	6
245	245	7
246	246	8
247	247	9
248	248	10
249	249	11
250	250	12
251	251	13
252	252	14
253	253	15
254	254	16
255	255	17
256	256	18
257	257	19
258	258	20
259	259	21
260	260	22
261	261	23
262	262	24
263	263	1
264	264	2
265	265	3
266	266	4
267	267	5
268	268	6
269	269	7
270	270	8
271	271	9
272	272	10
273	273	11
274	274	12
275	275	13
276	276	14
277	277	15
278	278	16
279	279	17
280	280	18
281	281	19
282	282	20
283	283	21
284	284	22
285	285	23
286	286	24
287	287
288	288	e. one Registered Nurse or Advanced Practice Registered
289	289	Nurse licensed and practicing in this state with
290	290	experience treating rare diseases ,
291	291	f. one physician practicing in this state with experience
292	292	treating rare diseases ,
293	293	g. one geneticist or genetic counselor ,
294	294	h. one hospital administrator, or his or her designee,
295	295	from a hospital in this state that provides care to
296	296	persons diagnosed with a rare disease,
297	297	i. at least two patients who hav e a rare disease,
298	298	j. at least one caregiver of a person w ith a rare
299	299	disease,
300	300	k. one representative of a rare disease patient
301	301	organization that operates in this state,
302	302	l. one pharmacist with experience dispensing drugs used
303	303	to treat rare diseases,
304	304	m. one representative of the biopharma ceutical industry,
305	305	n. one representative of a health plan company ,
306	306	o. one member of the scientific community who is engaged
307	307	in rare disease research including, but not limited
308	308	to, a medical researcher with experience conducting
309	309	research on rare diseases , and
310	310	p. one mental health prov ider with experience t reating
311	311	rare disease patients in this state.
312	312
313	313
314	314	Req. No. 2981 Page 5 1
315	315	2
316	316	3
317	317	4
318	318	5
319	319	6
320	320	7
321	321	8
322	322	9
323	323	10
324	324	11
325	325	12
326	326	13
327	327	14
328	328	15
329	329	16
330	330	17
331	331	18
332	332	19
333	333	20
334	334	21
335	335	22
336	336	23
337	337	24
338	338	1
339	339	2
340	340	3
341	341	4
342	342	5
343	343	6
344	344	7
345	345	8
346	346	9
347	347	10
348	348	11
349	349	12
350	350	13
351	351	14
352	352	15
353	353	16
354	354	17
355	355	18
356	356	19
357	357	20
358	358	21
359	359	22
360	360	23
361	361	24
362	362
363	363	E. 1. The Council shall electronically submit a report to the
364	364	President Pro Tempore of the Senate, the Speaker of the House of
365	365	Representatives, and the Governor within one year of establishment
366	366	of the Oklahoma Rare Disease Advisory Council and annually
367	367	thereafter. Prior to submission, a draft of t he annual report shall
368	368	be made available for public comment and d iscussed at an open pu blic
369	369	meeting.
370	370	2. Annual reports shall:
371	371	a. describe the activities and p rogress of the Council
372	372	under this section, and
373	373	b. provide recommendations to the Legislature and
374	374	Governor on ways to address the needs of people living
375	375	with rare diseases in this state.
376	376	F. 1. The initial meeting of the Council shall occur no later
377	377	than February 1, 202 5. Thereafter, the Council shall meet no less
378	378	than quarterly.
379	379	2. The Council shall:
380	380	a. provide opportunities for the public to hear updates
381	381	and provide input into its work, and
382	382	b. create and maintain a public website where meeting
383	383	minutes, notices of upcoming meetings, and public
384	384	comments may be submitted.
385	385	G. 1. The Governor shall appoint the chair for an initial term
386	386	of three (3) years. At the end of the chair’s initial three-year
387	387
388	388
389	389	Req. No. 2981 Page 6 1
390	390	2
391	391	3
392	392	4
393	393	5
394	394	6
395	395	7
396	396	8
397	397	9
398	398	10
399	399	11
400	400	12
401	401	13
402	402	14
403	403	15
404	404	16
405	405	17
406	406	18
407	407	19
408	408	20
409	409	21
410	410	22
411	411	23
412	412	24
413	413	1
414	414	2
415	415	3
416	416	4
417	417	5
418	418	6
419	419	7
420	420	8
421	421	9
422	422	10
423	423	11
424	424	12
425	425	13
426	426	14
427	427	15
428	428	16
429	429	17
430	430	18
431	431	19
432	432	20
433	433	21
434	434	22
435	435	23
436	436	24
437	437
438	438	term, and every two (2) years thereafter, members of the Council
439	439	shall elect, by a majority vote, a new chair.
440	440	2. Council members shall serve no longer than three (3) years,
441	441	except that, to facilitate a staggered rotation of members to reta in
442	442	continuity and knowledge transfer, during the initial five (5) years
443	443	after the establishment of the Council, members may serve up to a
444	444	four-year term.
445	445	3. If a vacancy occurs, the Council, by a majority vote, shall
446	446	fill such vacancy in a time ly manner and in compliance with
447	447	requirements set forth in subsection D of this section .
448	448	H. As used in this section, “rare disease”, sometimes called an
449	449	orphan disease, means a disease that affects fewer than two hundred
450	450	thousand (200,000) people in the United States.
451	451	SECTION 2. This act shall become effective November 1, 2024 .
452	452
453	453	59-2-2981 DC 1/17/2024 12:31:31 PM

Oklahoma 2024 Regular Session

Oklahoma Senate Bill SB1772 Compare Versions