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Information on Minnesota State Agencies, Boards, Task Forces, and Commissions

Compiled by the Minnesota Legislative Reference Library


Minnesota Rare Disease Advisory Council

Also known as:
Chloe Barnes Advisory Council on Rare Diseases (2019-2022)
Active dates:2019 -
Function:

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:

  1. a list of existing, publicly accessible resources on research, diagnosis, treatment, and education relating to rare diseases;
  2. 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;
  3. 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; and
  4. 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
  5. 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; and

(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.

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.

Legislative members may not deliberate about or vote on decisions related to the issuance of grants of state money.

The council must issue an annual report on its activities by January 1 of each year, beginning January 1, 2020.

History:

A council on rare diseases was first proposed in the 2017-2018 session (HF2574/SF2786), but the provision that would have created the group was included in a large 2018 supplemental budget bill that was vetoed by Governor Mark Dayton (see Laws of Minn. 2018, chap. 201 (SF3656)).

In 2019 the legislature again proposed the council and in May Governor Tim Walz signed SF973 into law, which requested that the University of Minnesota establish the council to provide advice on research, diagnosis, treatment, and education related to rare diseases. The 2019 legislation named the council in memory of Chloe Barnes, a two-year-old girl from Hopkins, Minnesota who passed away from metachromatic leukodystrophy in 2010. The University of Minnesota Board of Regents convened the group in 2019, was tasked with appointing members to the group, and, with assistance from staff in the University of Minnesota Medical School, published the group’s first three annual reports.

In 2022, the legislature changed the name of the council to the Minnesota Rare Disease Advisory Council and made changes to the group’s structure. Group members are now appointed by the governor, and the Council of Disability provides administrative support to the council.

Membership:

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.

The advisory council shall consist of at least 17 public members who reflect statewide representation. Except for initial members, members are appointed by the governor. Four members of the legislature appointed as described below.

The governor shall appoint at least the following public members:

  • three physicians licensed and practicing in the state with experience researching, diagnosing, or treating rare diseases, including one specializing in pediatrics;
  • one registered nurse or advanced practice registered nurse licensed and practicing in the state with experience treating rare diseases;
  • 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;
  • 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;
  • a representative of a rare disease patient organization that operates in the state;
  • a social worker with experience providing services to persons diagnosed with a rare disease;
  • a pharmacist with experience with drugs used to treat rare diseases;
  • a dentist licensed and practicing in the state with experience treating rare diseases;
  • a representative of the biotechnology industry;
  • a representative of health plan companies;
  • a medical researcher with experience conducting research on rare diseases;
  • a genetic counselor with experience providing services to persons diagnosed with a rare disease or caregivers of those persons; and
  • representatives with other areas of expertise as identified by the advisory council.

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.

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.

Members may be reappointed for up to two full additional terms according to the advisory council's operating procedures.

2022 Minn. Laws Chap. 98 Art. 13 Sec. 12 notes: Public members serving on the University of Minnesota's Advisory Council on Rare Diseases on June 30, 2022, are the initial public members of the Minnesota Rare Disease Advisory Council. The terms of the members begin on July 1, 2022. The governor must designate six members to serve a two-year term; six members to serve a three-year term; and five members to serve a four-year term. The governor may appoint additional members under Minnesota Statutes, section 137.68, subdivision 2, paragraph (b), clause (13), and must set their terms so that roughly one-third of the members' terms expire after two years, one-third after three years, and one-third after four years. Legislative members of the University of Minnesota's Advisory Council on Rare Disease serve on the Minnesota Rare Disease Advisory Council until appointing authorities appoint successors. The person serving as chair of the executive subcommittee of the University of Minnesota's Advisory Council on Rare Diseases shall convene the first meeting of the Minnesota Rare Disease Advisory Council by September 1, 2022.

Note: The Legislative Reference Library may have additional reports on or by this group available through our catalog.
Record last updated: 08/17/2022
 

Additional print information on this group may be available in the Library's collection of agency notebooks. Please contact a librarian for assistance. The Minnesota Agencies database is a work in progress.

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