Read the full stored bill text
Req. No. 11095 Page 1
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
STATE OF OKLAHOMA
1st Session of the 60th Legislature (2025)
HOUSE BILL 1019 By: McCane
AS INTRODUCED
An Act relating to public health; establishing the
Oklahoma Rare Disease Advisory Council; stating
purpose and activities of the Council; providing
appointment procedures and membership requirements;
requiring submission of certain annual report;
specifying duration of membership terms; providing
for filling of vacancies; defining term; providing
for codification; and providing an effective date.
BE IT ENACTED BY THE PEOPLE OF THE STATE OF OKLAHOMA:
SECTION 1. NEW LAW A new section of law to be codified
in the Oklahoma Statutes as Section 1-451 of Title 63, unless there
is created a duplication in numbering, reads as follows:
A. The Oklahoma Rare Disease Advisory Council shall be
established within the State Department of Health in accordance with
this section.
B. The purpose of the Council shall be to provide guidance and
recommendations to educate the public, the Legislature, and other
state agencies, as appropriate, on the needs of individuals with
rare diseases living in this state.
Req. No. 11095 Page 2
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
C. The Council shall conduct the following activities to
benefit those impacted by rare diseases in this state:
1. Convene public hearings, make inquiries, and solicit
comments from the general public in Oklahoma to assist the Council
with a first-year landscape or survey of the needs of rare disease
patients, caregivers, and providers in the state;
2. Provide testimony and comments on pending legislation and
regulations before the Legislature, if called, and other state
agencies that impact Oklahoma's rare disease community;
3. Consult with experts on rare diseases to develop policy
recommendations to improve patient access to, and quality of, rare
disease specialists, affordable and comprehensive health care
coverage, relevant diagnostics, timely treatment, and other needed
services;
4. Establish best practices and protocols to include in-state
planning related to natural disasters, public health emergencies, or
other emergency declarations to enable continuity of care for rare
disease patients and ensure safeguards against discrimination for
rare disease patients are in place;
5. Identify areas of unmet need for research and opportunities
for collaboration across stakeholders and other state rare disease
advisory councils that can inform future studies and work done by
the Council; and
Req. No. 11095 Page 3
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
6. Research and identify best practices to reduce health
disparities and achieve health equity in the research, diagnosis,
and treatment of rare disease in this state.
D. 1. The Council's appointment process shall be conducted in
a transparent manner to provide interested individuals an
opportunity to apply for membership on the Council. All members of
the Council shall be full-time residents of this state as
practicable. Membership shall include a diverse set of stakeholders
representative of the geographic and population diversity of the
state.
2. The Governor shall appoint the chair of the Council not
later than December 1, 2025. The chair shall not hold any position
within the government of this state.
3. The Chair shall appoint no fewer than seventeen (17)
members, including the following:
a. one representative of an academic research institution
in the state that receives any grant funding for rare
disease research,
b. one representative of the State Department of Health's
Office of Minority Health and Health Equity, or
successor division,
c. one representative of the Oklahoma Health Care
Authority,
d. one representative of the Insurance Department,
Req. No. 11095 Page 4
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
e. one registered nurse or Advanced Practice Registered
Nurse licensed and practicing in this state with
experience treating rare diseases,
f. one physician practicing in this state with experience
treating rare diseases,
g. one geneticist or genetic counselor,
h. one hospital administrator, or his or her designee,
from a hospital in this state that provides care to
persons diagnosed with a rare disease,
i. at least two patients who have a rare disease,
j. at least one caregiver of a person with a rare
disease,
k. one representative of a rare disease patient
organization that operates in this state,
l. one pharmacist with experience dispensing drugs used
to treat rare diseases,
m. one representative of the biopharmaceutical industry,
n. one representative of a health plan company,
o. one member of the scientific community who is engaged
in rare disease research including, but not limited
to, a medical researcher with experience conducting
research on rare diseases, and
p. one mental health provider with experience treating
rare disease patients in this state.
Req. No. 11095 Page 5
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
E. 1. The Council shall electronically submit a report to the
President Pro Tempore of the Oklahoma State Senate, the Speaker of
the Oklahoma House of Representatives, and the Governor within one
(1) year of establishment of the Oklahoma Rare Disease Advisory
Council and annually thereafter. Prior to submission, a draft of
the annual report shall be made available for public comment and
discussed at an open public meeting.
2. The annual reports shall:
a. describe the activities and progress of the Council
under this section, and
b. provide recommendations to the Legislature and
Governor on ways to address the needs of people living
with rare diseases in this state.
F. 1. The initial meeting of the Council shall occur no later
than February 1, 2026. Thereafter, the Council shall meet no less
than quarterly.
2. The Council shall:
a. provide opportunities for the public to hear updates
and provide input into its work, and
b. create and maintain a public website where meeting
minutes, notices of upcoming meetings, and public
comments may be submitted.
G. 1. The Governor shall appoint the chair for an initial term
of three (3) years. At the end of the chair's initial three-year
Req. No. 11095 Page 6
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
term, and every two (2) years thereafter, members of the Council
shall elect, by a majority vote, a new chair.
2. Council members shall serve no longer than three (3) years,
except that, to facilitate a staggered rotation of members to retain
continuity and knowledge transfer, during the initial five (5) years
after the establishment of the Council, members may serve up to a
four-year term.
3. If a vacancy occurs, the Council, by a majority vote, shall
fill such vacancy in a timely manner and in compliance with
requirements set forth in subsection D of this section.
H. As used in this section, "rare disease", sometimes called an
orphan disease, means a disease that affects fewer than two hundred
thousand (200,000) people in the United States.
SECTION 2. This act shall become effective November 1, 2025.
60-1-11095 TJ 12/13/24