Bill Text: IL SB0397 | 2009-2010 | 96th General Assembly | Enrolled

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Bill Title: Amends the Department of Human Services Act. Makes a technical change in a Section concerning the legislative purpose of the Act.

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Passed) 2009-09-25 - Public Act . . . . . . . . . 96-0790 [SB0397 Detail]

Download: Illinois-2009-SB0397-Enrolled.html

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AN ACT concerning State government.
Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
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

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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

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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.
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

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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.
(Source: P.A. 95-12, eff. 7-2-07; revised 10-23-08.)
Section 99. Effective date. This Act takes effect upon