Bill Text: IL HB4576 | 2015-2016 | 99th General Assembly | Chaptered

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Bill Title: 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.

Sponsorship: Strong Partisan Bill (Democrat 21-2)

Status: (Passed) 2016-08-12 - Public Act . . . . . . . . . 99-0773 [HB4576 Detail]

Download: Illinois-2015-HB4576-Chaptered.html

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Public Act 099-0773
HB4576 Enrolled LRB099 17088 MJP 41446 b
AN ACT concerning health.
Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
Section 1. Short title. This Act may be cited as the Rare
Disease Commission Act.
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.
"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.
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:

(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

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.
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

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;
(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.
Section 20. Administrative support. The Department of
Public Health shall provide administrative and other support to
the Commission.
Section 90. Repeal. This Act is repealed on January 1,

2020.
Section 99. Effective date. This Act takes effect January
1, 2017.