Full Text of SB0397 096th General Assembly
SB0397enr 96TH GENERAL ASSEMBLY
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| AN ACT concerning State government.
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| Be it enacted by the People of the State of Illinois, | 3 |
| represented in the General Assembly:
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| Section 5. The Hemophilia Care Act is amended by changing | 5 |
| Section 2.5 as follows: | 6 |
| (410 ILCS 420/2.5) | 7 |
| Sec. 2.5. Hemophilia Advisory Review Board. | 8 |
| (a) The Director of Healthcare and Family Services Public | 9 |
| Health in collaboration and in consultation with the Director | 10 |
| of Insurance, shall establish an independent advisory board | 11 |
| known as the Hemophilia Advisory Review Board. The Board shall | 12 |
| review, may comment upon, and make recommendations to the | 13 |
| Directors with regard to, but not limited to the following: | 14 |
| (1) Proposed legislative or administrative changes to | 15 |
| policies and programs that are integral to the health and | 16 |
| wellness of individuals with hemophilia and other bleeding | 17 |
| disorders. | 18 |
| (2) Standards of care and treatment for persons living | 19 |
| with hemophilia and other bleeding disorders. In examining | 20 |
| standards of care, the Board shall protect open access to | 21 |
| any and all treatments for hemophilia and other bleeding | 22 |
| disorders, in accordance with federal guidelines and | 23 |
| standards of care guidelines developed by the Medical and |
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| Scientific Advisory Council (MASAC) of the National | 2 |
| Hemophilia Foundation (NHF), an internationally recognized | 3 |
| body whose guidelines set the standards of care for | 4 |
| hemophilia and other bleeding disorders around the world. | 5 |
| (3) The development of community-based initiatives to | 6 |
| increase awareness of care and treatment for persons living | 7 |
| with hemophilia and other bleeding disorders. The | 8 |
| Department of Healthcare and Family Services Health may | 9 |
| provide such services through cooperative agreements with | 10 |
| Hemophilia Treatment Centers, medical facilities, schools, | 11 |
| nonprofit organizations servicing the bleeding disorder | 12 |
| community, or other appropriate means. | 13 |
| (4) Facilitating linkages for persons with hemophilia | 14 |
| and other bleeding disorders. | 15 |
| (5) Protecting the rights of people living with | 16 |
| hemophilia and other bleeding disorders to appropriate | 17 |
| health insurance coverage be it under a private or | 18 |
| State-sponsored health insurance provider. | 19 |
| (b) The Board shall consist of the Director of Healthcare | 20 |
| and Family Services and the Director of Insurance or their | 21 |
| designee, who shall serve as non-voting members, and 7 voting | 22 |
| members appointed by the Governor in consultation and in | 23 |
| collaboration with the Directors. The voting members shall be | 24 |
| selected from among the following member groups: | 25 |
| (1) one board-certified physician licensed, practicing | 26 |
| and currently treating individuals with hemophilia or |
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| other bleeding disorders; | 2 |
| (2) one nurse licensed, practicing and currently | 3 |
| treating individuals with hemophilia or other bleeding | 4 |
| disorders; | 5 |
| (3) one social worker licensed, practicing and | 6 |
| currently treating individuals with hemophilia or other | 7 |
| bleeding disorders; | 8 |
| (4) one representative of a federally funded | 9 |
| Hemophilia Treatment Center; | 10 |
| (5) one representative of an organization established | 11 |
| under the Illinois Insurance Code for the purpose of | 12 |
| providing health insurance; | 13 |
| (6) one representative of a voluntary health | 14 |
| organization that currently services the hemophilia and | 15 |
| other bleeding disorders community; and | 16 |
| (7) one patient or caregiver of a patient with | 17 |
| hemophilia or other bleeding disorder.
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| The Board may also have up to 5 additional nonvoting members as | 19 |
| determined appropriate by the Directors. Nonvoting members may | 20 |
| be persons with or caregivers of a patient with hemophilia or a | 21 |
| bleeding disorder other than hemophilia or persons experienced | 22 |
| in the diagnosis, treatment, care, and support of individuals | 23 |
| with hemophilia or other bleeding disorders. | 24 |
| No more than a majority of the voting members may be of the | 25 |
| same political party.
Members of the Board shall elect one of | 26 |
| its members to act as chair for a term of 3 years. The chair |
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| shall retain all voting rights. If there is a vacancy on the | 2 |
| Board, such position may be filled in the same manner as the | 3 |
| original appointment.
Members of the Board shall receive no | 4 |
| compensation, but may be reimbursed for actual expenses | 5 |
| incurred in the carrying out of their duties. The Board shall | 6 |
| meet no less than 4 times per year and follow all policies and | 7 |
| procedures of the State of Illinois Open Meetings Law. | 8 |
| (c) No later than 6 months after the date of enactment of | 9 |
| this amendatory Act, the Board shall submit to the Governor and | 10 |
| the General Assembly a report with recommendations for | 11 |
| maintaining access to care and obtaining appropriate health | 12 |
| insurance coverage for individuals with hemophilia and other | 13 |
| bleeding disorders. The report shall be subject to public | 14 |
| review and comment prior to adoption. No later than 6 months | 15 |
| after adoption by the Governor and Legislature and annually | 16 |
| thereafter, the Director of Healthcare and Family Services | 17 |
| shall issue a report, which shall be made available to the | 18 |
| public, on the status of implementing the recommendations as | 19 |
| proposed by the Board and on any state and national activities | 20 |
| with regard to hemophilia and other bleeding disorders.
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| (Source: P.A. 95-12, eff. 7-2-07; revised 10-23-08.)
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| Section 99. Effective date. This Act takes effect upon | 23 |
| becoming law. |
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