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An Act
ENROLLED SENATE
BILL NO. 207 By: Woods and Hicks of the
Senate
and
West (Josh), Waldron, Hill,
McCane, Alonso-Sandoval,
Pittman, and Roberts of the
House
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;
prescribing certain meeting requirements; specifying
duration of membership terms; providing for filling
of vacancies; defining term; amending 63 O.S. 2021,
Section 1-533, as amended by Section 1, Chapter 161,
O.S.L. 2022 (63 O.S. Supp. 2024, Section 1-533),
which relates to educational and newborn screening
programs; modifying certain screening requirement;
requiring compilation and publication of certain
annual report; providing for codification; providing
an effective date; and declaring an emergency.
SUBJECT: Rare diseases
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:
ENR. S. B. NO. 207 Page 2
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.
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 with stakeholders and other states’ rare disease
advisory councils that can inform future studies and work done by
the Council; and
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.
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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 thirteen (13) 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 Oklahoma Health Care
Authority,
c. one representative of the Insurance Department,
d. one Registered Nurse or Advanced Practice Registered
Nurse licensed and practicing in this state with
experience treating rare diseases,
e. one physician practicing in this state with experience
treating rare diseases,
f. one hospital administrator, or his or her designee,
from a hospital in this state that provides care to
persons diagnosed with a rare disease,
g. at least two patients who have a rare disease,
h. at least one caregiver of a person with a rare
disease,
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i. one representative of a rare disease patient
organization that operates in this state,
j. one representative of the biopharmaceutical industry,
k. one representative of a health plan company, and
l. 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.
4. The chair may appoint additional members on an ad hoc basis.
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 (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. 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. Meetings of the Council shall be conducted in accordance
with the Oklahoma Open Meeting Act.
G. The Council shall:
1. Provide opportunities for the public to hear updates and
provide input into its work; and
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2. Create and maintain a public website where meeting minutes,
notices of upcoming meetings, and public comments may be submitted.
H. 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
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.
I. 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. AMENDATORY 63 O.S. 2021, Section 1-533, as
amended by Section 1, Chapter 161, O.S.L. 2022 (63 O.S. Supp. 2024,
Section 1-533), is amended to read as follows:
Section 1-533. A. The State Commissioner of Health shall
provide, pursuant to the provisions of Section 1-534 of this title,
as technologies and funds become available, an intensive educational
and newborn screening program among physicians, hospitals, public
health nurses, and the public concerning phenylketonuria, related
inborn metabolic disorders, and other genetic or biochemical
disorders for which:
1. Newborn screening will provide early treatment and
management opportunities that might not be available without
screening; and
2. Treatment and management will prevent intellectual
disabilities and/or reduce infant morbidity and mortality.
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B. This educational and newborn screening program shall include
information about:
1. The nature of the diseases;
2. Examinations for the detection of the diseases in infancy;
and
3. Follow-up measures to prevent the morbidity and mortality
resulting from these diseases.
C. For purposes of this section, “phenylketonuria” means an
inborn error of metabolism attributable to a deficiency of or a
defect in phenylalanine hydroxylase, the enzyme that catalyzes the
conversion of phenylalanine to tyrosine. The deficiency permits the
accumulation of phenylalanine and its metabolic products in the body
fluids. The deficiency can result in intellectual disabilities
(phenylpyruvic oligophrenia), neurologic manifestations (including
hyperkinesia, epilepsy, and microcephaly), light pigmentation, and
eczema. The disorder is transmitted as an autosomal recessive trait
and can be treated by administration of a diet low in phenylalanine.
D. To the extent practicable, the list of disorders screened
for under this section shall be identical to at a minimum include
those listed in the Recommended Uniform Screening Panel of the
United States Department of Health and Human Services.
E. On November 1, 2026, and each November 1 thereafter, the
State Department of Health shall compile an annual report listing
the disorders screened for under this section, specifying any
disorders added since the prior annual report, and detailing efforts
being undertaken to add additional disorders. The report shall be
published on the Department’s website and shall be submitted
electronically to the President Pro Tempore of the Senate, the
Speaker of the House of Representatives, the Governor, and the
Oklahoma Rare Disease Advisory Council established under Section 1
of this act.
F. The Commissioner shall promulgate any rules necessary to
effectuate the provision of this section.
SECTION 3. This act shall become effective July 1, 2025.
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SECTION 4. It being immediately necessary for the preservation
of the public peace, health or safety, an emergency is hereby
declared to exist, by reason whereof this act shall take effect and
be in full force from and after its passage and approval.
ENR. S. B. NO. 207 Page 8
Passed the Senate the 28th day of May, 2025.
Presiding Officer of the Senate
Passed the House of Representatives the 28th day of May, 2025.
Presiding Officer of the House
of Representatives
OFFICE OF THE GOVERNOR
Received by the Office of the Governor this ____________________
day of ___________________, 20_______, at _______ o'clock _______ M.
By: _________________________________
Approved by the Governor of the State of Oklahoma this _________
day of ___________________, 20_______, at _______ o'clock _______ M.
_________________________________
Governor of the State of Oklahoma
OFFICE OF THE SECRETARY OF STATE
Received by the Office of the Secretary of State this __________
day of __________________, 20 _______, at _______ o'clock _______ M.
By: _________________________________