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| | HB4576 Enrolled | | LRB099 17088 MJP 41446 b |
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| 1 | | AN ACT concerning health.
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| 2 | | Be it enacted by the People of the State of Illinois,
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| 3 | | represented in the General Assembly:
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| 4 | | Section 1. Short title. This Act may be cited as the Rare |
| 5 | | Disease Commission Act.
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| 6 | | Section 5. Definitions. As used in this Act, unless the |
| 7 | | context requires otherwise: |
| 8 | | "Chairperson" means the Chairperson of the Rare Disease |
| 9 | | Commission. |
| 10 | | "Commission" means the Rare Disease Commission. |
| 11 | | "Rare disease" means a disease that affects less than |
| 12 | | 200,000 people in the United States.
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| 13 | | "Relative" means a spouse, parent, parent-in-law, sibling, |
| 14 | | sibling-in-law, child, child-in-law, grandparent, aunt, or |
| 15 | | uncle. |
| 16 | | "Vice-Chairperson" means the Vice-Chairperson of the Rare |
| 17 | | Disease Commission.
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| 18 | | Section 10. Commission created; membership. |
| 19 | | (a) There is created the Rare Disease Commission to advise |
| 20 | | the State on issues pertaining to the care and treatment of |
| 21 | | individuals 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 |
| 23 | | the Commission's membership by a simple majority vote of the |
| 24 | | total membership of the Commission. The Vice-Chairperson of the |
| 25 | | Commission shall be elected from the Commission's membership by |
| 26 | | a simple majority vote of the total membership of the |
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| 1 | | Commission. |
| 2 | | (d) The Governor, President of the Senate, Minority Leader |
| 3 | | of the Senate, Speaker of the House of Representatives, and |
| 4 | | Minority Leader of the House of Representatives shall make |
| 5 | | their initial appointments to the Commission by February 1, |
| 6 | | 2017. |
| 7 | | (e) All members shall be appointed for terms of 3 years. No |
| 8 | | member shall serve more than 2 consecutive terms. A member |
| 9 | | shall serve until his or her successor is appointed and |
| 10 | | qualified. |
| 11 | | (f) Vacancies in Commission membership shall be filled in |
| 12 | | the same manner as initial appointments. Appointments to fill |
| 13 | | vacancies occurring before the expiration of a term shall be |
| 14 | | for the remainder of the unexpired term. |
| 15 | | (g) Total membership of the Commission consists of the |
| 16 | | number of members serving on the Commission not including any |
| 17 | | vacant positions. A quorum shall consist of a simple majority |
| 18 | | of total membership and shall be sufficient to conduct the |
| 19 | | transaction of business of the Commission, unless stipulated |
| 20 | | otherwise in the by-laws of the Commission. |
| 21 | | (h) The Commission shall meet at least quarterly.
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| 22 | | Section 15. Study; recommendations. The Commission shall |
| 23 | | make recommendations to the General Assembly, in the form of an |
| 24 | | annual report through 2020, regarding: |
| 25 | | (1) the use of prescription drugs and innovative |
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| 1 | | therapies for children and adults with rare diseases, and |
| 2 | | specific subpopulations of children or adults with rare |
| 3 | | diseases, as appropriate, together with recommendations on |
| 4 | | the ways in which this information should be used in |
| 5 | | specific State programs that (A) provide assistance or |
| 6 | | health care coverage to individuals with rare diseases or |
| 7 | | broader populations that include individuals with rare |
| 8 | | diseases, or (B) have responsibilities associated with |
| 9 | | promoting the quality of care for individuals with rare |
| 10 | | diseases or broader populations that include individuals |
| 11 | | with rare diseases; |
| 12 | | (2) legislation that could improve the care and |
| 13 | | treatment of adults or children with rare diseases;
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| 14 | | (3) in coordination with the Genetic and Metabolic |
| 15 | | Diseases Advisory Committee, the screening of newborn |
| 16 | | children for the presence of genetic disorders; and |
| 17 | | (4) any other issues the Commission considers |
| 18 | | appropriate. |
| 19 | | The Commission shall submit its annual report to the |
| 20 | | General Assembly no later than December 31 of each year.
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| 21 | | Section 20. Administrative support. The Department of |
| 22 | | Public Health shall provide administrative and other support to |
| 23 | | the Commission.
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| 24 | | Section 90. Repeal. This Act is repealed on January 1, |