| ||||
| Public Act 099-0773 | ||||
| ||||
| ||||
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.
| ||