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Minnesota Legislature

Office of the Revisor of Statutes

HF 684

1st Engrossment - 91st Legislature (2019 - 2020) Posted on 03/20/2019 12:51pm

KEY: stricken = removed, old language.
underscored = added, new language.

Bill Text Versions

Engrossments
Introduction Posted on 02/04/2019
1st Engrossment Posted on 03/13/2019
Division Engrossments
1st Division Engrossment Posted on 03/07/2019

Current Version - 1st Engrossment

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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:

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 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).
new text end

new text begin (b) The Board of Regents or a designee is requested to appoint the following public
members:
new text end

new text begin (1) three physicians licensed and practicing in the state with experience researching,
diagnosing, or treating rare diseases. At least one physician appointed under this clause
must be a pediatrician;
new text end

new text begin (2) one registered nurse or advanced practice registered nurse licensed and practicing
in the state with experience treating rare diseases;
new text end

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;
new text end

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;
new text end

new text begin (5) a representative of a rare disease patient organization that operates in the state;
new text end

new text begin (6) a social worker with experience providing services to persons diagnosed with a rare
disease;
new text end

new text begin (7) a pharmacist with experience with drugs used to treat rare diseases;
new text end

new text begin (8) a dentist licensed and practicing in the state with experience treating rare diseases;
new text end

new text begin (9) a representative of the biotechnology industry;
new text end

new text begin (10) a representative of health plan companies;
new text end

new text begin (11) a medical researcher with experience conducting research on rare diseases; and
new text end

new text begin (12) a genetic counselor with experience providing services to persons diagnosed with
a rare disease or caregivers of those persons.
new text end

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 September
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.
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 October 1, 2019. The advisory council shall
meet at the call of the chairperson or at the request of a majority of advisory council members.
new text end

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) 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:
new text end

new text begin (i) a list of existing, publicly accessible resources on research, diagnosis, treatment, and
education relating to rare diseases;
new text end

new text begin (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;
new text end

new text begin (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
new text end

new text begin (iv) identifying best practices to ensure health care providers are adequately informed
of the most effective strategies for recognizing and treating rare diseases; and
new text end

new text begin (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.
new text end

new text begin (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.
new text end

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.
new text end

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, 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.
new text end

Sec. 2. new text beginAPPROPRIATION.
new text end

new text begin $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.
new text end