HF 3676

as introduced - 92nd Legislature (2021 - 2022) Posted on 02/24/2022 05:59pm

A bill for an act
relating to rare diseases; modifying provisions governing the Rare Disease Advisory
Council; instructing the revisor of statutes to renumber certain statutes;
appropriating money; amending Minnesota Statutes 2020, section 137.68.

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

Section 1.

Minnesota Statutes 2020, section 137.68, is amended to read:

137.68 new text begin MINNESOTA RARE DISEASE new text end ADVISORY COUNCIL deleted text begin ON RARE
DISEASES deleted text end .

Subdivision 1.

Establishment.

deleted text begin The University of Minnesota is requested to establish deleted text end new text begin
There is established new text end an advisory council on rare diseases to provide advice on new text begin policies,
access, equity, new text end research, diagnosis, treatment, and education related to rare diseases. new text begin The
advisory council is established in honor of Chloe Barnes and her experiences in the health
care system. new text end 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 deleted text begin Chloe Barnes Advisory
Council on Rare Diseases deleted text end new text begin Minnesota Rare Disease Advisory Council new text end . new text begin The Council on
Disability shall house the advisory council.
new text end

Subd. 2.

Membership.

(a) The advisory council deleted text begin may deleted text end new text begin shall new text end consist of new text begin at least 17 new text end public
members new text begin who reflect statewide representation and are new text end appointed by deleted text begin the Board of Regents
or a designee deleted text end new text begin the governor new text end according to paragraph (b) and four members of the legislature
appointed according to paragraph (c).

(b) deleted text begin The Board of Regents or a designee is requested to deleted text end new text begin The governor shall new text end appoint new text begin at
least new text end the following public members new text begin according to section 15.059 new text end :

(1) three physicians licensed and practicing in the state with experience researching,
diagnosing, or treating rare diseases, including one specializing in pediatrics;

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

(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;

(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 begin . One person appointed under this clause must reside in rural
Minnesota new text end ;

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

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

(7) a pharmacist with experience with drugs used to treat rare diseases;

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

(9) a representative of the biotechnology industry;

(10) a representative of health plan companies;

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

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

new text begin (13) representatives with other areas of expertise as identified by the advisory council.
new text end

(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.

(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.

(e) deleted text begin Initial appointments to the advisory council shall be made no later than September
1, 2019. deleted text end new text begin Notwithstanding section 15.059, new text end 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 begin (f) Members may be reappointed for additional terms according to the advisory council's
operating procedures.
new text end

Subd. 3.

Meetings.

deleted 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. deleted text end The advisory council shall
meet at the call of the chairperson or at the request of a majority of advisory council members. new text begin
Meetings of the advisory council are subject to section 13D.01, and notice of its meetings
is governed by section 13D.04.
new text end

new text begin Subd. 3a. new text end

new text begin Chairperson; executive director; staff; executive committee. new text end

new text begin (a) The
advisory council shall elect a chairperson and other officers as it deems necessary and in
accordance with the advisory council's operating procedures.
new text end

new text begin (b) The advisory council shall be governed by an executive committee elected by the
members of the advisory council. One member of the executive committee must be the
advisory council chairperson.
new text end

new text begin (c) The advisory council shall appoint an executive director. The executive director
serves as an ex officio nonvoting member of the executive committee. The advisory council
may delegate to the executive director any powers and duties under this section that do not
require advisory council approval. The executive director serves in the unclassified service
and may be removed at any time by a majority vote of the advisory council. The executive
director may employ and direct staff necessary to carry out advisory council mandates,
policies, activities, and objectives.
new text end

new text begin (d) The executive committee may appoint additional subcommittees and work groups
as necessary to fulfill the duties of the advisory council.
new text end

Subd. 4.

Duties.

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

(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:

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

(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;

(iii) identifying new text begin and addressing new text end 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; deleted text begin and
deleted text end

new text begin (iv) identifying and addressing barriers faced by patients with a rare disease to obtaining
care, caused by prior authorization requirements in private and public health plans; and
new text end

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

(2) advising, consulting, and cooperating with the Department of Health, new text begin including new text end the
Advisory Committee on Heritable and Congenital Disorders deleted text begin , deleted text end new text begin ; the Department of Human
Services, including the Drug Utilization Review Board and the Drug Formulary Committee; new text end
and other agencies of state government in developing new text begin recommendations, new text end information new text begin , new text end and
programs for the public and the health care community relating to diagnosis, treatment, and
awareness of rare diseases deleted text begin . deleted text end new text begin ;
new text end

new text begin (3) advising on policy issues and advancing policy initiatives at the state and federal
levels; and
new text end

new text begin (4) receiving funds and issuing grants.
new text end

(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.

Subd. 5.

Conflict of interest.

Advisory council members are subject to the deleted text begin Board of
Regents policy on conflicts deleted text end new text begin advisory council's conflict new text end of interest new text begin policy as outlined in the
advisory council's operating procedures new text end .

Subd. 6.

Annual report.

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 begin EFFECTIVE DATE. new text end

new text begin This section is effective July 1, 2022.
new text end

Sec. 2. new text begin APPROPRIATIONS.
new text end

new text begin In accordance with Minnesota Statutes, section 15.039, subdivision 6, the unexpended
balance of money appropriated from the general fund to the Board of Regents of the
University of Minnesota for purposes of the advisory council on rare diseases under
Minnesota Statutes, section 137.68, shall be under the control of the Minnesota Rare Disease
Advisory Council and the Council on Disability.
new text end

new text begin EFFECTIVE DATE. new text end

new text begin This section is effective July 1, 2022.
new text end

Sec. 3. new text begin REVISOR INSTRUCTION.
new text end

new text begin The revisor of statutes shall renumber as Minnesota Statutes, section 256.4835, the
Minnesota Rare Disease Advisory Council that is currently coded as Minnesota Statutes,
section 137.68. The revisor shall also make necessary cross-reference changes consistent
with the renumbering.
new text end

new text begin EFFECTIVE DATE. new text end

new text begin This section is effective July 1, 2022.
new text end