Rep. Joseph M. Lyons
Filed: 5/30/2009
 
 

 




 

 		












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AMENDMENT TO SENATE BILL 397




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    AMENDMENT NO. ______. Amend Senate Bill 397 by replacing 
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everything after the enacting clause with the following: 

 
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    "Section 5. The Hemophilia Care Act is amended  by changing 
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Section 2.5 as follows:
 
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    (410 ILCS 420/2.5)
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    Sec. 2.5. Hemophilia Advisory Review Board.
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    (a) The Director of Healthcare and Family Services Public 
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Health in collaboration and in consultation with the Director 
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of Insurance, shall establish an independent advisory board 
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known as the Hemophilia Advisory Review Board. The Board shall 
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review, may comment upon, and make recommendations to the 
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Directors with regard to, but not limited to the following:
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        (1) Proposed legislative or administrative changes to 
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    policies and programs that are integral to the health and 
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    wellness of individuals with hemophilia and other bleeding 
 


 






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    disorders.
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        (2) Standards of care and treatment for persons living 
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    with hemophilia and other bleeding disorders.  In examining 
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    standards of care, the Board shall protect open access to 
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    any and all treatments for hemophilia and other bleeding 
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    disorders, in accordance with federal guidelines and 
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    standards of care guidelines developed by the Medical and 
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    Scientific Advisory Council (MASAC) of the National 
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    Hemophilia Foundation (NHF), an internationally recognized 
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    body whose guidelines set the standards of care for 
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    hemophilia and other bleeding disorders around the world.
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        (3) The development of community-based initiatives to 
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    increase awareness of care and treatment for persons living 
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    with hemophilia and other bleeding disorders.  The 
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    Department of Healthcare and Family Services Health may 
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    provide such services through cooperative agreements with 
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    Hemophilia Treatment Centers, medical facilities, schools, 
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    nonprofit organizations servicing the bleeding disorder 
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    community, or other appropriate means.
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        (4) Facilitating linkages for persons with hemophilia 
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    and other bleeding disorders.
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        (5) Protecting the rights of people living with 
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    hemophilia and other bleeding disorders to appropriate 
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    health insurance coverage be it under a private or 
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    State-sponsored health insurance provider.
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    (b) The Board shall consist of the Director of Healthcare 
 


 






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and Family Services and the Director of Insurance  or their 
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designee, who shall serve as non-voting members, and 7 voting 
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members appointed by the Governor in consultation and in 
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collaboration with the Directors. The voting members shall be 
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selected from among the following member groups:
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        (1) one board-certified physician licensed, practicing 
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    and currently treating individuals with hemophilia or 
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    other bleeding disorders; 
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        (2) one nurse licensed, practicing and currently 
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    treating individuals with hemophilia or other bleeding 
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    disorders;
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        (3) one social worker licensed, practicing and 
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    currently treating individuals with hemophilia or other 
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    bleeding disorders;
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        (4) one representative of a federally funded 
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    Hemophilia Treatment Center;
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        (5) one representative of an organization established 
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    under the Illinois Insurance Code for the purpose of 
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    providing health insurance;
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        (6) one representative of a voluntary health 
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    organization that currently services the hemophilia and 
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    other bleeding disorders community; and
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        (7) one patient or caregiver of a patient with 
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    hemophilia or other bleeding disorder.

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The Board may also have up to 5 additional nonvoting members as 
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determined appropriate by the Directors.  Nonvoting members may 
 


 






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be persons with or caregivers of a patient with hemophilia or a 
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bleeding disorder other than hemophilia or persons experienced 
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in the diagnosis, treatment, care, and support of individuals 
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with hemophilia or other bleeding disorders.
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    No more than a majority of the voting members may be of the 
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same political party.

 Members of the Board shall elect one of 
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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 
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Board, such position may be filled in the same manner as the 
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original appointment.

Members of the Board shall receive no 
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compensation, but may be reimbursed for actual expenses 
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incurred in the carrying out of their duties. The Board shall 
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meet no less than 4 times per year and follow all policies and 
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procedures of the State of Illinois Open Meetings Law.
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    (c) No later than 6 months after the date of enactment of 
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this amendatory Act, the Board shall submit to the Governor and 
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the General Assembly a report with recommendations for 
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maintaining access to care and obtaining appropriate health 
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insurance coverage for individuals with hemophilia and other 
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bleeding disorders.  The report shall be subject to public 
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review and comment prior to adoption.  No later than 6 months 
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after adoption by the Governor and Legislature and annually 
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thereafter, the Director of Healthcare and Family Services 
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shall issue a report, which shall be made available to the 
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public, on the status of implementing the recommendations as 
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proposed by the Board and on any state and national activities 
 


 






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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 
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becoming law.".