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Public Act 096-0790 |
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AN ACT concerning State government.
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Be it enacted by the People of the State of Illinois, | ||||
represented in the General Assembly:
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Section 5. The Hemophilia Care Act is amended by changing | ||||
Section 2.5 as follows: | ||||
(410 ILCS 420/2.5) | ||||
Sec. 2.5. Hemophilia Advisory Review Board. | ||||
(a) The Director of Healthcare and Family Services Public | ||||
Health in collaboration and in consultation with the Director | ||||
of Insurance, shall establish an independent advisory board | ||||
known as the Hemophilia Advisory Review Board. The Board shall | ||||
review, may comment upon, and make recommendations to the | ||||
Directors with regard to, but not limited to the following: | ||||
(1) Proposed legislative or administrative changes to | ||||
policies and programs that are integral to the health and | ||||
wellness of individuals with hemophilia and other bleeding | ||||
disorders. | ||||
(2) Standards of care and treatment for persons living | ||||
with hemophilia and other bleeding disorders. In examining | ||||
standards of care, the Board shall protect open access to | ||||
any and all treatments for hemophilia and other bleeding | ||||
disorders, in accordance with federal guidelines and | ||||
standards of care guidelines developed by the Medical and |
Scientific Advisory Council (MASAC) of the National | ||
Hemophilia Foundation (NHF), an internationally recognized | ||
body whose guidelines set the standards of care for | ||
hemophilia and other bleeding disorders around the world. | ||
(3) The development of community-based initiatives to | ||
increase awareness of care and treatment for persons living | ||
with hemophilia and other bleeding disorders. The | ||
Department of Healthcare and Family Services Health may | ||
provide such services through cooperative agreements with | ||
Hemophilia Treatment Centers, medical facilities, schools, | ||
nonprofit organizations servicing the bleeding disorder | ||
community, or other appropriate means. | ||
(4) Facilitating linkages for persons with hemophilia | ||
and other bleeding disorders. | ||
(5) Protecting the rights of people living with | ||
hemophilia and other bleeding disorders to appropriate | ||
health insurance coverage be it under a private or | ||
State-sponsored health insurance provider. | ||
(b) The Board shall consist of the Director of Healthcare | ||
and Family Services and the Director of Insurance or their | ||
designee, who shall serve as non-voting members, and 7 voting | ||
members appointed by the Governor in consultation and in | ||
collaboration with the Directors. The voting members shall be | ||
selected from among the following member groups: | ||
(1) one board-certified physician licensed, practicing | ||
and currently treating individuals with hemophilia or |
other bleeding disorders; | ||
(2) one nurse licensed, practicing and currently | ||
treating individuals with hemophilia or other bleeding | ||
disorders; | ||
(3) one social worker licensed, practicing and | ||
currently treating individuals with hemophilia or other | ||
bleeding disorders; | ||
(4) one representative of a federally funded | ||
Hemophilia Treatment Center; | ||
(5) one representative of an organization established | ||
under the Illinois Insurance Code for the purpose of | ||
providing health insurance; | ||
(6) one representative of a voluntary health | ||
organization that currently services the hemophilia and | ||
other bleeding disorders community; and | ||
(7) one patient or caregiver of a patient with | ||
hemophilia or other bleeding disorder.
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The Board may also have up to 5 additional nonvoting members as | ||
determined appropriate by the Directors. Nonvoting members may | ||
be persons with or caregivers of a patient with hemophilia or a | ||
bleeding disorder other than hemophilia or persons experienced | ||
in the diagnosis, treatment, care, and support of individuals | ||
with hemophilia or other bleeding disorders. | ||
No more than a majority of the voting members may be of the | ||
same political party.
Members of the Board shall elect one of | ||
its members to act as chair for a term of 3 years. The chair |
shall retain all voting rights. If there is a vacancy on the | ||
Board, such position may be filled in the same manner as the | ||
original appointment.
Members of the Board shall receive no | ||
compensation, but may be reimbursed for actual expenses | ||
incurred in the carrying out of their duties. The Board shall | ||
meet no less than 4 times per year and follow all policies and | ||
procedures of the State of Illinois Open Meetings Law. | ||
(c) No later than 6 months after the date of enactment of | ||
this amendatory Act, the Board shall submit to the Governor and | ||
the General Assembly a report with recommendations for | ||
maintaining access to care and obtaining appropriate health | ||
insurance coverage for individuals with hemophilia and other | ||
bleeding disorders. The report shall be subject to public | ||
review and comment prior to adoption. No later than 6 months | ||
after adoption by the Governor and Legislature and annually | ||
thereafter, the Director of Healthcare and Family Services | ||
shall issue a report, which shall be made available to the | ||
public, on the status of implementing the recommendations as | ||
proposed by the Board and on any state and national activities | ||
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 | ||
becoming law. |