SF 2786

as introduced - 90th Legislature (2017 - 2018) Posted on 03/27/2018 04:51pm

A bill for an act
relating to health; establishing an advisory council on rare diseases to advise the
commissioner of health on issues related to rare diseases; proposing coding for
new law in Minnesota Statutes, chapter 144.

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

Section 1.

new text begin [144.89] 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 An advisory council on rare diseases is established to
advise the commissioner of health 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 shall consist of public members
appointed by the commissioner of health according to paragraph (b) and four members of
the legislature appointed according to paragraph (c).
new text end

new text begin (b) The commissioner shall appoint the public members, including at least the following:
new text end

new text begin (1) three physicians licensed and practicing in the state with experience researching,
diagnosing, or treating rare diseases;
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;
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; and
new text end

new text begin (6) other public members, who may serve on an ad hoc basis.
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 shall serve as an ex officio, nonvoting
member 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, 2017.
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
one, two, or three years, determined by lot by the commissioner. Members appointed
according to paragraph (b) shall serve until their successors have been appointed.
new text end

new text begin (f) Members appointed according to paragraph (b) shall serve without compensation
except for reimbursement for actual and necessary expenses incurred in performing advisory
council duties.
new text end

new text begin Subd. 3. new text end

new text begin Meetings. new text end

new text begin The commissioner of health shall convene the first meeting of the
advisory council no later than September 1, 2017. The members shall elect a chairperson
from among the advisory council's membership. A majority of the advisory council members
constitutes a quorum. A majority vote of a quorum shall be required for the advisory council
to take any official actions. 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 shall include, but are not limited to:
new text end

new text begin (1) coordinating statewide efforts for the study of the incidence of rare diseases in the
state;
new text end

new text begin (2) advising the commissioner of health on research, diagnosis, treatment, and education
relating to rare diseases;
new text end

new text begin (3) researching and identifying priorities relating to the quality of and access to treatment
and services in the state for persons with rare diseases;
new text end

new text begin (4) developing, in conjunction with the state's medical schools, policy recommendations
relating to the quality of and access to treatment and services in the state for persons with
rare diseases;
new text end

new text begin (5) advising, consulting, and cooperating with the Department of Health 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;
new text end

new text begin (6) identifying best practices for rare disease care implemented in other states and at the
national level that will improve rare disease care in the state;
new text end

new text begin (7) developing recommendations for effective strategies to raise public awareness of
rare diseases in the state; and
new text end

new text begin (8) developing recommendations for best practices to ensure health care providers are
adequately informed of the most effective strategies for recognizing and treating rare diseases.
new text end

new text begin (b) To carry out the duties in this subdivision, the advisory council shall:
new text end

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
new text end

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, and the public.
new text end

new text begin Subd. 5. new text end

new text begin Annual report. new text end

new text begin By January 1 of each year, beginning January 1, 2018, the
advisory council shall report to the chairs and ranking minority members of the legislative
committees with jurisdiction over health care policy on the council's activities under
subdivision 4 and other issues on which the council may choose to report.
new text end

new text begin Subd. 6. new text end

new text begin Advisory council on rare diseases account. new text end

new text begin An advisory council on rare
diseases account is created in the special revenue fund in the state treasury. All gifts, grants,
and bequests of funds obtained by or for the advisory council shall be deposited in the
account and are appropriated to the commissioner of health to fund activities of the advisory
council.
new text end

new text begin EFFECTIVE DATE. new text end

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