Shown verbatim: the complete text as captured from the official PDF posted by the Oklahoma Legislature, fetched 2026-07-23. Page and line markers are part of the official record; nothing is edited or removed. The official bill page.
1 STATE OF OKLAHOMA
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2 1st Session of the 60th Legislature (2025)
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3 SENATE BILL 225 By: Hicks
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6 AS INTRODUCED
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7 An Act relating to public health; establishing the
7 Oklahoma Rare Disease Advisory Council; stating
8 purpose and activities of the Council; providing
8 appointment procedures and membership requirements;
9 requiring submission of certain annual report;
9 prescribing certain meeting requirements; specifying
10 duration of membership terms; providing for filling
10 of vacancies; defining term; providing for
11 codification; and providing an effective date.
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14 BE IT ENACTED BY THE PEOPLE OF THE STATE OF OKLAHOMA:
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15 SECTION 1. NEW LAW A new section of law to be codified
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16 in the Oklahoma Statutes as Section 1-451 of Title 63, unless there
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17 is created a duplication in numbering, reads as follows:
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18 A. The Oklahoma Rare Disease Advisory Council shall be
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19 established within the State Department of Health in accordance with
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20 this section.
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21 B. The purpose of the Council shall be to provide guidance and
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22 recommendations to educate the public, the Legislature, and other
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23 state agencies, as appropriate, on the needs of individuals with
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24 rare diseases living in this state.
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Req. No. 477 Page 1
1 C. The Council shall conduct the following activities to
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2 benefit those impacted by rare diseases in this state:
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3 1. Convene public hearings, make inquiries, and solicit
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4 comments from the general public in Oklahoma to assist the Council
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5 with a first-year landscape or survey of the needs of rare disease
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6 patients, caregivers, and providers in the state;
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7 2. Provide testimony and comments on pending legislation and
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8 regulations before the Legislature, if called, and other state
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9 agencies that impact Oklahoma's rare disease community;
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10 3. Consult with experts on rare diseases to develop policy
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11 recommendations to improve patient access to, and quality of, rare
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12 disease specialists, affordable and comprehensive health care
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13 coverage, relevant diagnostics, timely treatment, and other needed
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14 services;
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15 4. Establish best practices and protocols to include in state
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16 planning related to natural disasters, public health emergencies, or
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17 other emergency declarations to enable continuity of care for rare
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18 disease patients and ensure safeguards against discrimination for
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19 rare disease patients are in place;
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20 5. Identify areas of unmet need for research and opportunities
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21 for collaboration with stakeholders and other states' rare disease
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22 advisory councils that can inform future studies and work done by
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23 the Council; and
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1 6. Research and identify best practices to reduce health
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2 disparities and achieve health equity in the research, diagnosis,
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3 and treatment of rare disease in this state.
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4 D. 1. The Council's appointment process shall be conducted in
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5 a transparent manner to provide interested individuals an
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6 opportunity to apply for membership on the Council. All members of
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7 the Council shall be full-time residents of this state as
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8 practicable. Membership shall include a diverse set of stakeholders
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9 representative of the geographic and population diversity of the
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10 state.
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11 2. The Governor shall appoint the chair of the Council not
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12 later than December 1, 2025. The chair shall not hold any position
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13 within the government of this state.
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14 3. The chair shall appoint no fewer than thirteen (13) members,
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15 including the following:
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16 a. one representative of an academic research institution
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17 in the state that receives any grant funding for rare
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18 disease research,
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19 b. one representative of the Oklahoma Health Care
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20 Authority,
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21 c. one representative of the Insurance Department,
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22 d. one Registered Nurse or Advanced Practice Registered
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23 Nurse licensed and practicing in this state with
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24 experience treating rare diseases,
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1 e. one physician practicing in this state with experience
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2 treating rare diseases,
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3 f. one hospital administrator, or his or her designee,
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4 from a hospital in this state that provides care to
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5 persons diagnosed with a rare disease,
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6 g. at least two patients who have a rare disease,
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7 h. at least one caregiver of a person with a rare
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8 disease,
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9 i. one representative of a rare disease patient
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10 organization that operates in this state,
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11 j. one representative of the biopharmaceutical industry,
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12 k. one representative of a health plan company, and
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13 l. one member of the scientific community who is engaged
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14 in rare disease research including, but not limited
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15 to, a medical researcher with experience conducting
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16 research on rare diseases.
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17 4. The chair may appoint additional members on an ad hoc basis.
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18 E. 1. The Council shall electronically submit a report to the
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19 President Pro Tempore of the Senate, the Speaker of the House of
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20 Representatives, and the Governor within one (1) year of
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21 establishment of the Oklahoma Rare Disease Advisory Council and
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22 annually thereafter. Prior to submission, a draft of the annual
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23 report shall be made available for public comment and discussed at
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24 an open public meeting.
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1 2. Annual reports shall:
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2 a. describe the activities and progress of the Council
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3 under this section, and
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4 b. provide recommendations to the Legislature and
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5 Governor on ways to address the needs of people living
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6 with rare diseases in this state.
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7 F. 1. The initial meeting of the Council shall occur no later
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8 than February 1, 2026. Thereafter, the Council shall meet no less
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9 than quarterly.
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10 2. Meetings of the Council shall be conducted in accordance
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11 with the Oklahoma Open Meeting Act.
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12 G. The Council shall:
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13 1. Provide opportunities for the public to hear updates and
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14 provide input into its work; and
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15 2. Create and maintain a public website where meeting minutes,
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16 notices of upcoming meetings, and public comments may be submitted.
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17 H. 1. The Governor shall appoint the chair for an initial term
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18 of three (3) years. At the end of the chair's initial three-year
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19 term, and every two (2) years thereafter, members of the Council
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20 shall elect, by a majority vote, a new chair.
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21 2. Council members shall serve no longer than three (3) years,
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22 except that, to facilitate a staggered rotation of members to retain
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23 continuity and knowledge transfer, during the initial five (5) years
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1 after the establishment of the Council, members may serve up to a
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2 four-year term.
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3 3. If a vacancy occurs, the Council, by a majority vote, shall
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4 fill such vacancy in a timely manner and in compliance with
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5 requirements set forth in subsection D of this section.
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6 I. As used in this section, "rare disease", sometimes called an
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7 orphan disease, means a disease that affects fewer than two hundred
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8 thousand (200,000) people in the United States.
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9 SECTION 2. This act shall become effective November 1, 2025.
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11 60-1-477 DC 12/30/2024 4:53:40 PM
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Req. No. 477 Page 6Every fact on this page links to its source, starting with the official bill record.