HF 3841

as introduced - 93rd Legislature (2023 - 2024) Posted on 04/12/2024 12:06am

A bill for an act
relating to health; modifying membership of the Rare Disease Advisory Council;
appropriating money; amending Minnesota Statutes 2022, section 256.4835,
subdivisions 2, 4, by adding subdivisions.

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

Section 1.

Minnesota Statutes 2022, section 256.4835, subdivision 2, is amended to read:

Subd. 2.

new text begin Public new text end membership.

(a) The advisory council shall consist of at least 17 public
members who reflect statewide representation. Except for initial new text begin public new text end members, new text begin public
new text end members are appointed by the governor according to paragraph (b). deleted text begin Four members of the
legislature are appointed according to paragraph (c).
deleted text end

(b) The governor shall appoint at least the following public members according to section
15.0597:

(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. One person appointed under this clause must reside in rural
Minnesota;

(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;

(12) a genetic counselor with experience providing services to persons diagnosed with
a rare disease or caregivers of those persons; and

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

deleted 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. Members appointed under this paragraph serve until their successors are
appointed.
deleted text end

deleted 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.
deleted text end

deleted text begin (e) deleted text end new text begin (c) Public new text end members appointed according to paragraph (b) shall serve for a term of
three years, except the initial members appointed according to paragraph (b). new text begin Public new text end members
appointed according to paragraph (b) shall serve until their successors have been appointed.

deleted text begin (f) deleted text end new text begin (d) Public new text end members may be reappointed for up to two full additional terms according
to the advisory council's operating procedures.

deleted text begin (g) deleted text end new text begin (e) Public new text end members may be removed as provided in section 15.059, subdivision 4.

deleted text begin (h) deleted text end new text begin (f) new text end Public members serve without compensation, but may have expenses reimbursed
as provided in section 15.059, subdivision 3. deleted text begin Legislative members may receive per diem
according to the rules of their respective bodies.
deleted text end

Sec. 2.

Minnesota Statutes 2022, section 256.4835, is amended by adding a subdivision
to read:

new text begin Subd. 2a. new text end

new text begin Legislative membership. new text end

new text begin 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. Legislative members appointed under this
subdivision serve until their successors are appointed. Legislative members may receive
per diems according to the rules of their respective bodies.
new text end

Sec. 3.

Minnesota Statutes 2022, section 256.4835, is amended by adding a subdivision
to read:

new text begin Subd. 2b. new text end

new text begin Ex officio membership. new text end

new text begin 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

Sec. 4.

Minnesota Statutes 2022, section 256.4835, is amended by adding a subdivision
to read:

new text begin Subd. 2c. new text end

new text begin Ad hoc membership. new text end

new text begin (a) The advisory council may include up to ... ad hoc
members appointed by the executive committee to provide additional expertise while the
advisory council undertakes a particular project. The initial term of appointment of an ad
hoc member shall be for one year. Ad hoc members may be reappointed for up to two
additional one-year terms according to the advisory council's operating procedures.
new text end

new text begin (b) Ad hoc members may be removed by the executive committee as provided in section
15.059, subdivision 4.
new text end

new text begin (c) An ad hoc member may not serve on the executive committee of the advisory council
and may not vote in the election of a chairperson or other officers nor on any matter related
to the governance of the advisory council, including the appointment of an executive director.
new text end

new text begin (d) Ad hoc members serve without compensation, but may have expenses reimbursed
as provided in section 15.059, subdivision 3.
new text end

Sec. 5.

Minnesota Statutes 2022, section 256.4835, subdivision 4, is amended to read:

Subd. 4.

Duties.

(a) The advisory council's duties may include deleted text begin , deleted text end 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 and addressing 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;

(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

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

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

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

(4) receiving funds and issuing grants.

(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.

(c) Legislative members new text begin and ad hoc members new text end may not deliberate about or vote on
decisions related to the issuance of grants of state money.

Sec. 6. new text begin APPROPRIATION.
new text end

new text begin $....... in fiscal year 2025 is appropriated from the general fund to the Rare Disease
Advisory Council to study sustainable reimbursement models for gene therapies to treat
rare diseases and to issue recommendations to the legislature, payers, hospitals, and
manufacturers. The general fund base for this appropriation is $....... in fiscal year 2026,
$....... in fiscal year 2027, and $....... in fiscal year 2028.
new text end