State of Illinois
2015 and 2016


Introduced , by Rep. Sonya M. Harper


New Act

    Creates the Rare Disease Commission Act. Provides for the creation of the Rare Disease Commission. Defines terms. Provides that initial appointments shall be made by February 1, 2017. Provides required criteria and considerations for appointees and nominations to the Commission. Includes provisions regarding the terms, vacancies, and compensation for the Commission's membership. Requires that the Commission meet at least quarterly and submit an annual report due no later than December 31 of every year to the General Assembly. Provides that the Department of Public Health shall provide administrative and other support to the Commission. Effective January 1, 2017.

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1    AN ACT concerning health.
2    Be it enacted by the People of the State of Illinois,
3represented in the General Assembly:
4    Section 1. Short title. This Act may be cited as the Rare
5Disease Commission Act.
6    Section 5. Definitions. As used in this Act, unless the
7context requires otherwise:
8    "Chairperson" means the Chairperson of the Rare Disease
10    "Commission" means the Rare Disease Commission.
11    "Rare disease" means a disease that affects less than
12200,000 people in the United States.
13    "Relative" means a spouse, parent, parent-in-law, sibling,
14sibling-in-law, child, child-in-law, grandparent, aunt, or
16    "Vice-Chairperson" means the Vice-Chairperson of the Rare
17Disease Commission.
18    Section 10. Commission created; membership.
19    (a) There is created the Rare Disease Commission to advise
20the State on issues pertaining to the care and treatment of
21individuals with rare diseases.
22    (b) The Commission shall be composed of 15 members:



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1        (1) Eleven members shall be appointed by the Governor
2    from residents of the State whose position, knowledge, or
3    experience enables them to reasonably represent the
4    concerns, needs, and recommendations of those with rare
5    diseases, including physicians or health care providers
6    who treat patients with rare diseases. At a minimum, 5
7    members of the Commission shall be persons who either have
8    a rare disease or are a family member of a person living
9    with a rare disease. In making the appointments under this
10    paragraph (1), the Governor shall consider nominations
11    made by advocacy groups for rare diseases and
12    community-based organizations.
13        (2) One member of the Senate appointed by the President
14    of the Senate.
15        (3) One member of the Senate appointed by the Minority
16    Leader of the Senate.
17        (4) One member of the House of Representatives
18    appointed by the Speaker of the House of Representatives.
19        (5) One member of the House of Representatives
20    appointed by the Minority Leader of the House of
21    Representatives.
22    (c) The Chairperson of the Commission shall be elected from
23the Commission's membership by a simple majority vote of the
24total membership of the Commission. The Vice-Chairperson of the
25Commission shall be elected from the Commission's membership by
26a simple majority vote of the total membership of the



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2    (d) The Governor, President of the Senate, Minority Leader
3of the Senate, Speaker of the House of Representatives, and
4Minority Leader of the House of Representatives shall make
5their initial appointments to the Commission by February 1,
7    (e) Of the initial members appointed by the Governor, 3
8shall be appointed to terms of one year, 4 shall be appointed
9to terms of 2 years, and 4 shall be appointed to terms of 3
10years. Thereafter, all members shall be appointed for terms of
113 years. No member shall serve more than 2 consecutive terms. A
12member shall serve until his or her successor is appointed and
13qualified. Initial members' terms of office shall be chosen by
14lot at the initial meeting of the Commission.
15    (f) Vacancies in Commission membership shall be filled in
16the same manner as initial appointments. Appointments to fill
17vacancies occurring before the expiration of a term shall be
18for the remainder of the unexpired term.
19    (g) Members shall not receive compensation for their
20services, but shall be reimbursed for their actual expenses
21incurred in the performance of their duties plus up to $50 per
22day for any actual loss of wages incurred in the performance of
23their duties.
24    (h) Total membership of the Commission consists of the
25number of members serving on the Commission not including any
26vacant positions. A quorum shall consist of a simple majority



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1of total membership and shall be sufficient to conduct the
2transaction of business of the Commission, unless stipulated
3otherwise in the by-laws of the Commission.
4    (j) The Commission shall meet at least quarterly.
5    Section 15. Study; recommendations. The Commission shall
6make recommendations to the General Assembly, in the form of an
7annual report, regarding:
8        (1) the use of prescription drugs and innovative
9    therapies for children and adults with rare diseases, and
10    specific subpopulations of children or adults with rare
11    diseases, as appropriate, together with recommendations on
12    the ways in which this information should be used in
13    specific State programs that (A) provide assistance or
14    health care coverage to individuals with rare diseases or
15    broader populations that include individuals with rare
16    diseases, or (B) have responsibilities associated with
17    promoting the quality of care for individuals with rare
18    diseases or broader populations that include individuals
19    with rare diseases;
20        (2) legislation that could improve the care and
21    treatment of adults or children with rare diseases;
22        (3) screening of newborn children for the presence of
23    genetic disorders; and
24        (4) any other issues the Commission considers
25    appropriate.



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1    The Commission shall submit its annual report to the
2General Assembly no later than December 31 of each year.
3    Section 20. Administrative support. The Department of
4Public Health shall provide administrative and other support to
5the Commission.
6    Section 99. Effective date. This Act takes effect January
71, 2017.