Public Act 096-0790
 		





SB0397 Enrolled
LRB096 06428 RCE 16512 b






    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 
    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.

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.

(Source: P.A. 95-12, eff. 7-2-07; revised 10-23-08.)

 
    Section 99. Effective date. This Act takes effect upon 
becoming law.