HF 2574

2nd Engrossment - 90th Legislature (2017 - 2018) Posted on 03/28/2018 01:41pm

A bill for an act
relating to health; requesting establishment of an advisory council on rare diseases
to provide advice on issues related to rare diseases; proposing coding for new law
in Minnesota Statutes, chapter 137.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:

Section 1.

new text begin [137.68] ADVISORY COUNCIL ON RARE DISEASES.
new text end

new text begin Subdivision 1. new text end

new text begin Establishment. new text end

new text begin The Board of Regents of 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.
new text end

new text begin Subd. 2. new text end

new text begin Membership. new text end

new text begin (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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new text begin (b) The Board of Regents or a designee is requested to appoint the following public
members:
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new text begin (1) three physicians licensed and practicing in the state with experience researching,
diagnosing, or treating rare diseases;
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new text begin (2) one registered nurse or advanced practice registered nurse licensed and practicing
in the state with experience treating rare diseases;
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new text begin (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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new text begin (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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new text begin (5) a representative of a rare disease patient organization that operates in the state;
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new text begin (6) a social worker with experience providing services to persons diagnosed with a rare
disease;
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new text begin (7) a pharmacist with experience with drugs used to treat rare diseases;
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new text begin (8) a representative of the biotechnology industry;
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new text begin (9) a representative of health plan companies; and
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new text begin (10) other public members, who may serve on an ad hoc basis.
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new text begin (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.
new text end

new text begin (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.
new text end

new text begin (e) Initial appointments to the advisory council shall be made no later than July 1, 2018.
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.
new text end

new text begin Subd. 3. new text end

new text begin Meetings. new text end

new text begin The Board of Regents or a designee is requested to convene the first
meeting of the advisory council no later than September 1, 2018. 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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new text begin Subd. 4. new text end

new text begin Duties. new text end

new text begin (a) The advisory council's duties may include, but are not limited to:
new text end

new text begin (1) developing protocols for providers to use to diagnose persons in the state with a rare
disease;
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new text begin (2) advising interested parties on research, diagnosis, treatment, and education relating
to rare diseases;
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new text begin (3) researching and identifying outcomes assessment tools and outcomes goals to be
used when treating persons with rare diseases;
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new text begin (4) developing, in conjunction with the state's medical schools and hospitals in the state
that provide care to persons diagnosed with a rare disease, policy recommendations relating
to the quality of and access to treatment and services in the state for persons with rare
diseases;
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new text begin (5) 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 the diagnosis, treatment, and awareness of rare diseases;
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new text begin (6) identifying best practices for rare disease care implemented in other states and at the
national and international levels that will improve rare disease care in the state and seeking
opportunities to partner with similar organizations in other states and counties;
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new text begin (7) examine problems faced by patients with a rare disease when changing health plans,
recommend 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 identify existing resources to assist these patients with
health plan enrollment;
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new text begin (8) developing recommendations for effective strategies to raise public awareness of
rare diseases in the state; and
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new text begin (9) developing recommendations for best practices to ensure health care providers are
adequately informed of the most effective strategies for recognizing and treating rare diseases.
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new text begin (b) To carry out the duties in this subdivision, the advisory council shall:
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new text begin (1) pursue and accept gifts, grants, and bequests of funds from individuals, foundations,
corporations, federal and state agencies, and other organizations and institutions to fund the
activities of the advisory council; and
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new text begin (2) publish findings, recommendations, and reports on the diagnosis, treatment, research,
and education for rare diseases to be used by the Department of Health, other state agencies,
the medical community, medical schools, researchers, and the public.
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new text begin Subd. 5. new text end

new text begin Conflict of interest. new text end

new text begin Advisory council members are subject to the Board of
Regents policy on conflicts of interest.
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new text begin Subd. 6. new text end

new text begin Annual report. new text end

new text begin By January 1 of each year, beginning January 1, 2019, 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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new text begin EFFECTIVE DATE. new text end

new text begin This section is effective the day following final enactment.
new text end