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STATE OF OKLAHOMA
2nd Session of the 59th Legislature (2024)
SENATE BILL 1772 By: Hicks
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 numberin g, 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.
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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 acc ess 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 proto cols 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 resear ch 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
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6. Research and identify best prac tices 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, 2024 . 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,
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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 hav e a rare disease,
j. at least one caregiver of a person w ith 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 biopharma ceutical 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 prov ider with experience t reating
rare disease patients in this state.
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E. 1. The Council shall electronically submit a report to the
President Pro Tempore of the Senate, the Speaker of the House of
Representatives, and the Governor within one year of establishment
of the Oklahoma Rare Disease Advisory Council and annually
thereafter. Prior to submission, a draft of t he annual report shall
be made available for public comment and d iscussed at an open pu blic
meeting.
2. Annual reports shall:
a. describe the activities and p rogress 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, 202 5. 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
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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 reta in
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 time ly 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, 2024 .
59-2-2981 DC 1/17/2024 12:31:31 PM