Establish the Montana rare disease advisory council

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AN ACT ESTABLISHING THE MONTANA RARE DISEASE ADVISORY COUNCIL; PROVIDING FOR
ADVISORY COUNCIL MEMBERSHIP AND DUTIES; ESTABLISHING REPORTING REQUIREMENTS;
PROVIDING AN APPROPRIATION; AND PROVIDING AN EFFECTIVE DATE.
WHEREAS, a rare disease, sometimes called an "orphan disease", is defined as a disease that affects
fewer than 200,000 people in the United States; and
WHEREAS, there are more than 10,000 known rare diseases affecting more than 30 million
Americans, more than half of whom are children; and
WHEREAS, approximately 95% of rare diseases do not have a treatment approved by the United
States Food and Drug Administration; and
WHEREAS, while the exact cause for many rare diseases remains unknown, many rare diseases are
genetic in origin and can be linked to mutations in a single gene or in multiple genes, which can be passed
down from generation to generation; and
WHEREAS, individuals with rare diseases face many obstacles, including delays in obtaining an
accurate diagnosis and finding a health care provider with expertise in treating the condition and a lack of
affordable access to therapies and medication used to treat rare diseases, resulting in significant physical,
mental, and financial challenges; and
WHEREAS, a state-based advisory council composed of qualified professionals and individuals living
with rare diseases and their caregivers would educate and advise medical professionals, government agencies,
legislators, and the public about rare diseases as an important public health issue and encourage research and
support the development of new and better policies to diagnose and treat rare diseases.
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MONTANA:
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Section 1. Rare disease advisory council -- membership. (1) There is a rare disease advisory
council within the department of public health and human services provided for in 2-15-2201 to provide
guidance, education, and recommendations to the public, the legislature, and other government agencies on
the needs of individuals with rare diseases living in Montana.
(2) The council consists of 17 members, who, if possible, must be full-time residents of Montana
representing the geographic and population diversity of the state as follows:
(a) one representative of an academic research institution in the state that receives grant funding
for rare disease research;
(b) one representative of the Montana medicaid program;
(c) one representative of the department of labor and industry;
(d) one nurse or advanced practice registered nurse licensed and practicing in Montana with
experience treating rare diseases;
(e) one physician practicing in Montana with experience treating rare diseases;
(f) one geneticist or genetic counselor;
(g) one hospital administrator or the administrator's designee from a hospital in Montana that
provides care to individuals diagnosed with rare diseases;
(h) two individuals with rare diseases;
(i) one caregiver of an individual with a rare disease;
(j) one representative of a rare disease patient organization that operates in Montana;
(k) one pharmacist with experience dispensing drugs used to treat rare diseases;
(l) one representative of the biopharmaceutical industry;
(m) one representative of a health plan company;
(n) one representative 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;
(o) one mental health provider with experience treating rare disease patients in Montana; and
(p) one representative of the Montana public health laboratory.
(3) (a) (i) Within 30 days after [the effective date of this act], the governor shall appoint one
member to serve as presiding officer of the advisory council for a 3-year term. The presiding officer may not
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hold a position within state government.
(ii) The governor shall appoint the remaining members of the advisory council for terms of not
more than 4 years. The initial appointments may specify a shorter length of the initial term in order to stagger
terms.
(b) At the end of the presiding officer's 3-year term and every 2 years afterward, the members of
the advisory council shall elect a presiding officer by a majority vote.
(c) A member of the council may be reappointed.
(d) If a vacancy occurs, a new member must be appointed by the governor to fill the balance of the
unexpired term.
(4) Advisory council members shall serve without additional compensation but are entitled to
reimbursement for travel expenses as provided for in 2-18-501 through 2-18-503.
Section 2. Rare disease advisory council duties -- meetings -- reports -- funding. (1) To benefit
individuals impacted by rare diseases in the state, the advisory council shall perform the following duties:
(a) convene public hearings, make inquiries, and solicit public comment to assist the advisory
council in surveying the needs of rare disease patients, caregivers, and providers in the state;
(b) consult with experts on rare diseases to develop policy recommendations for improving patient
access to and quality of rare disease specialists, affordable and comprehensive health care coverage, relevant
diagnostics, timely treatment, and other needed services;
(c) publish on the department of public health and human services' website:
(i) a list of existing, publicly accessible resources on research, diagnosis, treatment, and
education related to rare diseases in the state; and
(ii) meeting minutes, notice of upcoming meetings, and opportunities for the submission of public
comment to the advisory council;
(d) identify areas of unmet need for research and opportunities for collaboration with stakeholders
and rare disease advisory councils in other states that can inform future studies and work done by the advisory
council; and
(e) identify and distribute educational resources to health care providers to foster recognition and
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optimize treatment of rare diseases in the state.
(2) (a) The initial meeting of the advisory council must be held within 90 days after [the effective
date of this act].
(b) For the first year after the advisory council is established, the advisory council shall meet no
less than once a month in person or remotely for a length of time established by the presiding officer.
(c) After the first year of the advisory council's operation, the advisory council shall meet no less
than once a quarter in person or remotely as determined by the presiding officer.
(3) Within 1 year after [the effective date of this act] and annually thereafter, the council shall
submit a report to the governor and, in accordance with 5-11-210, to the legislature and the children, families,
health, and human services interim committee describing:
(a) the activities and progress of the advisory council related to the duties described in subsection
(1);
(b) the status of the funding of the advisory council, including grants that are sought, accepted, or
used; and
(c) recommendations to the governor and legislature on ways to address the needs of individuals
living with rare diseases in the state.
(4) The advisory council may seek gifts, donations, grants, and other sources of funding to support
its activities.
Section 3. Appropriation. (1) There is appropriated $16,000 from the general fund to the department
of public health and human services for the biennium beginning July 1, 2025.
(2) The appropriation must be used to pay for costs associated with the rare disease advisory
council provided for in [sections 1 and 2].
(3) The legislature intends that the appropriation in this section be considered part of the ongoing
base for the next legislative session.
Section 4. Codification instruction. [Sections 1 and 2] are intended to be codified as a new part in
Title 50, chapter 12, and the provisions of Title 50, chapter 12, apply to [sections 1 and 2].
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Section 5. Effective date. [This act] is effective July 1, 2025.
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I hereby certify that the within bill,
HB 943, originated in the House.
___________________________________________
Chief Clerk of the House
___________________________________________
Speaker of the House
Signed this _______________________________day
of____________________________________, 2025.
___________________________________________
President of the Senate
Signed this _______________________________day
of____________________________________, 2025.
HOUSE BILL NO. 943
INTRODUCED BY P. TUSS
AN ACT ESTABLISHING THE MONTANA RARE DISEASE ADVISORY COUNCIL; PROVIDING FOR
ADVISORY COUNCIL MEMBERSHIP AND DUTIES; ESTABLISHING REPORTING REQUIREMENTS;
PROVIDING AN APPROPRIATION; AND PROVIDING AN EFFECTIVE DATE.