as introduced - 91st Legislature (2019 - 2020) Posted on 03/06/2019 04:24pm
A bill for an act
relating to health; requesting the Board of Regents of the University of Minnesota
to establish an advisory council on rare diseases; appropriating money; proposing
coding for new law in Minnesota Statutes, chapter 137.
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:
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The University of Minnesota is requested to establish
an advisory council on rare diseases to provide advice on research, diagnosis, treatment,
and education related to rare diseases. For purposes of this section, "rare disease" has the
meaning given in United States Code, title 21, section 360bb. The council shall be called
the Chloe Barnes Advisory Council on Rare Diseases.
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(a) The advisory council may consist of public members appointed
by the Board of Regents or a designee according to paragraph (b) and four members of the
legislature appointed according to paragraph (c).
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(b) The Board of Regents or a designee is requested to appoint the following public
members:
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(1) three physicians licensed and practicing in the state with experience researching,
diagnosing, or treating rare diseases;
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(2) one registered nurse or advanced practice registered nurse licensed and practicing
in the state with experience treating rare diseases;
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(3) at least two hospital administrators, or their designees, from hospitals in the state
that provide care to persons diagnosed with a rare disease. One administrator or designee
appointed under this clause must represent a hospital in which the scope of service focuses
on rare diseases of pediatric patients;
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(4) three persons age 18 or older who either have a rare disease or are a caregiver of a
person with a rare disease;
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(5) a representative of a rare disease patient organization that operates in the state;
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(6) a social worker with experience providing services to persons diagnosed with a rare
disease;
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(7) a pharmacist with experience with drugs used to treat rare diseases;
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(8) a dentist licensed and practicing in the state with experience treating rare diseases;
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(9) a representative of the biotechnology industry;
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(10) a representative of health plan companies;
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(11) a medical researcher with experience conducting research on rare diseases; and
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(12) a genetic counselor with experience providing services to persons diagnosed with
a rare disease or caregivers of those persons.
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(c) The advisory council shall include two members of the senate, one appointed by the
majority leader and one appointed by the minority leader; and two members of the house
of representatives, one appointed by the speaker of the house and one appointed by the
minority leader.
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(d) The commissioner of health or a designee, a representative of Mayo Medical School,
and a representative of the University of Minnesota Medical School, shall serve as ex officio,
nonvoting members of the advisory council.
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(e) Initial appointments to the advisory council shall be made no later than July 1, 2019.
Members appointed according to paragraph (b) shall serve for a term of three years, except
that the initial members appointed according to paragraph (b) shall have an initial term of
two, three, or four years determined by lot by the chairperson. Members appointed according
to paragraph (b) shall serve until their successors have been appointed.
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The Board of Regents or a designee is requested to convene the first
meeting of the advisory council no later than September 1, 2019. The advisory council shall
meet at the call of the chairperson or at the request of a majority of advisory council members.
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(a) The advisory council's duties may include, but are not limited to:
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(1) in conjunction with the state's medical schools, the state's schools of public health,
and hospitals in the state that provide care to persons diagnosed with a rare disease,
developing resources or recommendations relating to quality of and access to treatment and
services in the state for persons with a rare disease, including but not limited to:
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(i) a list of existing, publicly accessible resources on research, diagnosis, treatment, and
education relating to rare diseases;
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(ii) identifying best practices for rare disease care implemented in other states, at the
national level, and at the international level, that will improve rare disease care in the state
and seeking opportunities to partner with similar organizations in other states and countries;
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(iii) identifying problems faced by patients with a rare disease when changing health
plans, including recommendations on how to remove obstacles faced by these patients to
finding a new health plan and how to improve the ease and speed of finding a new health
plan that meets the needs of patients with a rare disease; and
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(iv) identifying best practices to ensure health care providers are adequately informed
of the most effective strategies for recognizing and treating rare diseases; and
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(2) advising, consulting, and cooperating with the Department of Health, the Advisory
Committee on Heritable and Congenital Disorders, and other agencies of state government
in developing information and programs for the public and the health care community
relating to diagnosis, treatment, and awareness of rare diseases.
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(b) The advisory council shall collect additional topic areas for study and evaluation
from the general public. In order for the advisory council to study and evaluate a topic, the
topic must be approved for study and evaluation by the advisory council.
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Advisory council members are subject to the Board of
Regents policy on conflicts of interest.
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By January 1 of each year, beginning January 1, 2020, the
advisory council shall report to the chairs and ranking minority members of the legislative
committees with jurisdiction over higher education and health care policy on the advisory
council's activities under subdivision 4 and other issues on which the advisory council may
choose to report.
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$150,000 in fiscal year 2020 and $150,000 in fiscal year 2021 are appropriated from the
general fund to the commissioner of human services for transfer to the Board of Regents
of the University of Minnesota for the advisory council on rare diseases under Minnesota
Statutes, section 137.68.
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