Stricken language would be deleted from and underlined language would be added to present law.
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State of Arkansas 1
95th General Assembly A Bill 2
Regular Session, 2025 HOUSE BILL 1532 3
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By: Representative L. Johnson 5
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For An Act To Be Entitled 8
AN ACT TO CREATE THE ARKANSAS RARE DISEASE ADVISORY 9
COUNCIL; AND FOR OTHER PURPOSES. 10
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Subtitle 13
TO CREATE THE ARKANSAS RARE DISEASE 14
ADVISORY COUNCIL. 15
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BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF ARKANSAS: 17
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SECTION 1. Arkansas Code Title 20, Chapter 8, is amended to add an 19
additional subchapter to read as follows: 20
Subchapter 12 — Arkansas Rare Disease Advisory Council 21
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20-8-1201. Legislative findings. 23
The General Assembly finds that: 24
(1) A rare disease, sometimes called an orphan disease, is 25
defined as a disease that affects fewer than two hundred thousand (200,000) 26
people in the United States; 27
(2) There are more than ten thousand (10,000) known rare 28
diseases affecting more than thirty million (30,000,000) Americans with more 29
than half of this number being children; 30
(3) Approximately ninety -five percent (95%) of rare diseases do 31
not have a United States Food and Drug Administration approved treatment; 32
(4) While the exact cause for many rare diseases remains 33
unknown, many rare diseases are genetic in origin and can be linked to 34
mutations in a single gene or in multiple genes that can be passed down from 35
generation to generation; 36 HB1532
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(5) People with rare diseases face many obstacles, including 1
delays in obtaining an accurate diagnosis, finding a healthcare provider with 2
expertise in their condition, and a lack of affordable access to therapies 3
and medication used to treat rare diseases that may result in significant 4
physical, mental, and financial challenges; and 5
(6) A state-based advisory council composed of qualified 6
professionals and persons living with rare diseases and their caregivers 7
could educate or advise medical professionals, government agencies, 8
legislators, and the public about rare diseases as an important public health 9
issue to encourage research or support the development of new and better 10
policies to diagnose and treat rare diseases. 11
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20-8-1202. Arkansas Rare Disease Advisory Council — Creation — 13
Membership. 14
(a) There is created the Arkansas Rare Disease Advisory Council within 15
the Department of Health, to consist of the following eight (8) members: 16
(1) A representative from an academic research institution in 17
the state that receives grant funding for rare disease research; 18
(2) A representative from the Department of Human Services who 19
is knowledgeable about the Arkansas Medicaid Program; 20
(3) A geneticist or genetic counselor, appointed by the 21
Secretary of the Department of Health; 22
(4) At least two (2) patients who have a rare disease, appointed 23
by the secretary; 24
(5) At least one (1) caregiver of a person with a rare disease, 25
appointed by the secretary; 26
(6) A person who is a member of the scientific community, a 27
member of the biopharmaceutical industry, or a pharmacist who has experience 28
with or is engaged in rare disease research, including without limitation a 29
medical researcher with experience conducting research on rare diseases, 30
appointed by the secretary; and 31
(7) A mental health provider, registered nurse, advanced 32
practice registered nurse, or physician with experience treating patients who 33
have rare diseases in this state, appointed by the secretary. 34
(b)(1) All members of the advisory council shall be full -time 35
residents of this state. 36 HB1532
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(2) The membership of the council shall include a diverse set of 1
stakeholders representative of the geographic and population diversity of the 2
state. 3
(c)(1) The secretary shall appoint the Chair of the Arkansas Rare 4
Disease Advisory Council for an initial term of three (3) years. 5
(2) The chair shall not hold a position within the state 6
government. 7
(3) At the end of the initial three (3) year term, and every two 8
(2) years thereafter, the members of the council shall appoint, by a majority 9
vote, a new chair. 10
(d)(1) Members shall serve no longer than three (3) years. 11
(2) However, during the initial five (5) years after the 12
establishment of the council, members may serve up to four (4) years. 13
(e) If a vacancy occurs, the secretary shall fill the vacancy in a 14
timely manner and based on the requirements under subsection (a) of this 15
section. 16
(f)(1) The initial meeting of the council shall occur within the first 17
ninety (90) days after the effective date of this section. 18
(2) During the first year after the effective date of this 19
section, the council shall meet no less than one (1) time per month for a 20
time period determined by the chair either in person or via an online meeting 21
platform. 22
(3) After the first year after the effective date of this 23
section, the council shall meet no less than one (1) time per quarter either 24
in person or via an online meeting platform as determined by the chair. 25
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20-8-1203. Powers and duties. 27
The Arkansas Rare Disease Advisory Council shall: 28
(1) Provide guidance and recommendations to educate the public, 29
the General Assembly, and other government agencies and departments on the 30
needs of individuals with rare diseases living in this state; 31
(2) Convene public hearings, make inquiries, and solicit 32
comments from the general public in this state to assist the Arkansas Rare 33
Disease Advisory Council with a first -year landscape or survey of the needs 34
of rare disease patients, caregivers, and providers in the state; 35
(3) Provide testimony and comments on pending legislation and 36 HB1532
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rules before the General Assembly, or the Legislative Council when not in a 1
legislative session, and other state agencies that impact the rare disease 2
community in this state; 3
(4) Consult with experts on rare diseases to develop policy 4
recommendations to improve patient access to, and the quality of, rare 5
disease specialists, affordable and comprehensive healthcare coverage, 6
relevant diagnostics, timely treatment, and other needed services; 7
(5) Research and make recommendations to state agencies and 8
insurers that provide services to persons with a rare disease on the impact 9
of orphan drug pricing, prior authorization, cost -sharing, or other barriers 10
to the provision of treatment and care for patients; 11
(6) Establish best practices and protocols to include in state 12
planning related to natural disasters, public health emergencies, or other 13
emergency declarations to enable continuity of care for rare disease patients 14
and ensure safeguards against discrimination for rare disease patients are in 15
place; 16
(7) Evaluate and make recommendations to improve the Arkansas 17
Medicaid Program and state -regulated private health insurance coverage of 18
drugs for rare disease patients to improve coverage of diagnostics and 19
facilitate access to necessary healthcare providers with expertise in the 20
treatment of rare diseases; 21
(8) Publish a list of existing, publicly accessible resources on 22
research, diagnosis, treatment, and education relating to the rare diseases 23
on the website of the Department of Health; 24
(9) Identify areas of unmet need for research and opportunities 25
for collaboration across stakeholders and other state rare disease advisory 26
councils that can inform future studies and work done by the Arkansas Rare 27
Disease Advisory Council; 28
(10) Identify and distribute educational resources for 29
healthcare providers to foster recognition and optimize treatment of rare 30
diseases in this state; 31
(11) Research and identify best practices to reduce health 32
disparities and achieve health equity in the research, diagnosis, and 33
treatment of rare diseases in this state; and 34
(12) Provide opportunities for the public to hear updates and 35
provide input into the work of the Arkansas Rare Disease Advisory Council. 36 HB1532
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1
20-8-1204. Reports. 2
(a)(1) The Arkansas Rare Disease Advisory Council shall submit a 3
report to the Governor and the Legislative Council within one (1) year of 4
enactment of the Arkansas Rare Disease Advisory Council and annually 5
thereafter. 6
(2) Before submission of the report under subdivision (a)(1) of 7
this section, a draft of the report shall be made available for public 8
comment and discussed at an open public meeting. 9
(b) The report under subsection (a) of this section shall: 10
(1) Describe the activities and progress of the Arkansas Rare 11
Disease Advisory Council; 12
(2) Provide an update on the status of funding of the Arkansas 13
Rare Disease Advisory Council, including without limitation the grants that 14
were sought out, accepted, or used, and the remaining balance of funds of the 15
Arkansas Rare Disease Advisory Council; and 16
(3) Provide recommendations to the Governor and the General 17
Assembly on ways to address the needs of people living with rare diseases in 18
this state. 19
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20-8-1205. Funding. 21
(a) The members of the Arkansas Rare Disease Advisory Council may 22
solicit funds on behalf of the council. 23
(b) The council shall: 24
(1) Set up a method to securely hold and distribute funds to 25
support the functioning of the council; and 26
(2) Report funding sources in report required under § 20 -8-1203. 27
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