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Public Act 099-0773
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| HB4576 Enrolled | LRB099 17088 MJP 41446 b |
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AN ACT concerning health.
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Be it enacted by the People of the State of Illinois,
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represented in the General Assembly:
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Section 1. Short title. This Act may be cited as the Rare |
Disease Commission Act.
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Section 5. Definitions. As used in this Act, unless the |
context requires otherwise: |
"Chairperson" means the Chairperson of the Rare Disease |
Commission. |
"Commission" means the Rare Disease Commission. |
"Rare disease" means a disease that affects less than |
200,000 people in the United States.
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"Relative" means a spouse, parent, parent-in-law, sibling, |
sibling-in-law, child, child-in-law, grandparent, aunt, or |
uncle. |
"Vice-Chairperson" means the Vice-Chairperson of the Rare |
Disease Commission.
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Section 10. Commission created; membership. |
(a) There is created the Rare Disease Commission to advise |
the State on issues pertaining to the care and treatment of |
individuals with rare diseases. |
(b) The Commission shall be composed of 15 members:
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(1) Eleven members shall be appointed by the Governor |
from residents of the State whose position, knowledge, or |
experience enables them to reasonably represent the |
concerns, needs, and recommendations of those with rare |
diseases, including physicians or health care providers |
who treat patients with rare diseases. At a minimum, 5 |
members of the Commission shall be persons who either have |
a rare disease or are a family member of a person living |
with a rare disease. In making the appointments under this |
paragraph (1), the Governor shall consider nominations |
made by advocacy groups for rare diseases and |
community-based organizations. |
(2) One member of the Senate appointed by the President |
of the Senate. |
(3) One member of the Senate appointed by the Minority |
Leader of the Senate. |
(4) One member of the House of Representatives |
appointed by the Speaker of the House of Representatives. |
(5) One member of the House of Representatives |
appointed by the Minority Leader of the House of |
Representatives. |
(c) The Chairperson of the Commission shall be elected from |
the Commission's membership by a simple majority vote of the |
total membership of the Commission. The Vice-Chairperson of the |
Commission shall be elected from the Commission's membership by |
a simple majority vote of the total membership of the |
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Commission. |
(d) The Governor, President of the Senate, Minority Leader |
of the Senate, Speaker of the House of Representatives, and |
Minority Leader of the House of Representatives shall make |
their initial appointments to the Commission by February 1, |
2017. |
(e) All members shall be appointed for terms of 3 years. No |
member shall serve more than 2 consecutive terms. A member |
shall serve until his or her successor is appointed and |
qualified. |
(f) Vacancies in Commission membership shall be filled in |
the same manner as initial appointments. Appointments to fill |
vacancies occurring before the expiration of a term shall be |
for the remainder of the unexpired term. |
(g) Total membership of the Commission consists of the |
number of members serving on the Commission not including any |
vacant positions. A quorum shall consist of a simple majority |
of total membership and shall be sufficient to conduct the |
transaction of business of the Commission, unless stipulated |
otherwise in the by-laws of the Commission. |
(h) The Commission shall meet at least quarterly.
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Section 15. Study; recommendations. The Commission shall |
make recommendations to the General Assembly, in the form of an |
annual report through 2020, regarding: |
(1) the use of prescription drugs and innovative |
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therapies for children and adults with rare diseases, and |
specific subpopulations of children or adults with rare |
diseases, as appropriate, together with recommendations on |
the ways in which this information should be used in |
specific State programs that (A) provide assistance or |
health care coverage to individuals with rare diseases or |
broader populations that include individuals with rare |
diseases, or (B) have responsibilities associated with |
promoting the quality of care for individuals with rare |
diseases or broader populations that include individuals |
with rare diseases; |
(2) legislation that could improve the care and |
treatment of adults or children with rare diseases;
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(3) in coordination with the Genetic and Metabolic |
Diseases Advisory Committee, the screening of newborn |
children for the presence of genetic disorders; and |
(4) any other issues the Commission considers |
appropriate. |
The Commission shall submit its annual report to the |
General Assembly no later than December 31 of each year.
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Section 20. Administrative support. The Department of |
Public Health shall provide administrative and other support to |
the Commission.
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Section 90. Repeal. This Act is repealed on January 1, |