Public Act 096-1108
 
HB4587 EnrolledLRB096 13256 RPM 27918 b



    AN ACT concerning public health.

 
    Be it enacted by the People of the State of Illinois,
 
represented in the General Assembly:


 
    Section 1. Short title. This Act may be cited as the Lupus 
Education and Awareness Act.
 
    Section 5. Legislative findings and purpose. 
    (a) The General Assembly finds the following:
        (1) Lupus is an urgent national health issue.  Lupus is 
    the result of an immune system that is unbalanced and can 
    become destructive to any organ or tissue in the body.  
    Lupus is unpredictable and potentially fatal, yet no 
    satisfactory treatment exists.  Its health consequences 
    include heart attacks, strokes, seizures, and organ 
    failure.
        (2) National data indicates that more than 1.5 million 
    Americans live with some form of lupus; lupus affects women 
    9 times more often than men, and 80% of newly diagnosed 
    cases of lupus develop among women of childbearing age.  An 
    estimated 65,000 people with lupus reside in Illinois.
        (3) Lupus disproportionately affects women of color; 
    it is 2 to 3 times more common among African Americans, 
    Hispanics and Latinos, Asians, and Native Americans and is 
    generally more prevalent in minority populations, a health 
    disparity that remains unexplained.
        (4) No new drugs have been approved by the U.S. Food 
    and Drug Administration specifically for lupus in 50 years 
    and, while current treatments for the disease can be 
    effective, they can lead to damaging side effects.
        (5) The pain and fatigue associated with lupus can 
    threaten one's ability to live independently, make it 
    difficult to maintain employment, and lead normal lives. 
    One in 5 people with lupus is disabled by the disease and 
    consequently receives support from government programs, 
    including Medicare, Medicaid, Social Security Disability, 
    and Social Security Supplemental Income.
        (6) The estimated average annual total of direct and 
    indirect costs for an individual with lupus is $21,000; for 
    people who have the most serious form of lupus, medical 
    costs can greatly exceed this amount, causing a significant 
    economic, emotional, and social burden to the entire family 
    and society.
    (b) The purpose of this Act is to create a multi-pronged, 
statewide program to promote public and health professional 
awareness among State and local health and human services 
officials, physicians, nurses, and other health care providers 
and increase knowledge concerning the causes and consequences 
of lupus, the importance of early diagnosis and appropriate 
management, and effective treatment and management strategies 
by taking the following actions:
        (1) Conducting educational and training programs for 
    health professionals on lupus diagnosis and management.


        (2) Disseminating medically sound educational 
    materials and information on lupus research findings to 
    patients and health care professionals.


        (3) Fostering greater public understanding and 
    awareness of lupus statewide.

 
    Section 10. Definitions.  For the purpose of this Act:
    "Department" means the Department of Public Health.
    "Director" means the Director of Public Health.
    "Panel" means the Interagency and Partnership Advisory 
Panel on Lupus.
    "Program" means the Lupus Education and Awareness Program 
(LEAP).



 
    Section 15. Establishment of the Lupus Education and 
Awareness Program.

 
    (a) Subject to appropriation, there is created within the 
Department of Public Health the Lupus Education and Awareness 
Program (LEAP). The Program shall be composed of various 
components, including, but not limited to, public awareness 
activities and professional education programs. Subject to 
appropriation, the Interagency and Partnership Advisory Panel 
on Lupus is created to oversee LEAP and advise the Department 
in implementing LEAP.
    (b) The Department shall establish, promote, and maintain 
the Lupus Education and Awareness Program with an emphasis on 
minority populations and at-risk communities in order to raise 
public awareness, educate consumers, and educate and train 
health professionals, human service providers, and other 
audiences.
    The Department shall work with a national organization that 
deals with lupus to implement programs to raise public 
awareness about the symptoms and nature of lupus, personal risk 
factors, and options for diagnosing and treating the disease, 
with a particular focus on populations at elevated risk for 
lupus, including women and communities of color.
    The Program shall include initiatives to educate and train 
physicians, health care professionals, and other service 
providers on the most up-to-date and accurate scientific and 
medical information regarding lupus diagnosis, treatment, 
risks and benefits of medications, research advances, and 
therapeutic decision making, including medical best practices 
for detecting and treating the disease in special populations.  
These activities shall include, but not be limited to, all of 
the following:
        (1) Distribution of medically-sound health information 
    produced by a national organization that deals with lupus 
    and government agencies, including, but not limited to, the 
    National Institutes of Health, the Centers for Disease 
    Control and Prevention, and the Social Security 
    Administration, through local health departments, schools, 
    agencies on aging, employer wellness programs, physicians 
    and other health professionals, hospitals, health plans 
    and health maintenance organizations, women's health 
    programs, and nonprofit and community-based organizations.
        (2) Development of educational materials for health 
    professionals that identify the latest scientific and 
    medical information and clinical applications.
        (3) Working to increase knowledge among physicians, 
    nurses, and health and human services professionals about 
    the importance of lupus diagnosis, treatment, and 
    rehabilitation.


        (4) Support of continuing medical education programs 
    presented by the leading State academic institutions by 
    providing them with the most up-to-date information.


        (5) Providing statewide workshops and seminars for 
    in-depth professional development regarding the care and 
    management of patients with lupus in order to bring the 
    latest information on clinical advances to care providers.


        (6)  Development and maintenance of a directory of 
    lupus-related services and lupus health care providers 
    with specialization in services to diagnose and treat 
    lupus. The Department shall disseminate this directory to 
    all stakeholders, including, but not limited to, 
    individuals with lupus, families, and representatives from 
    voluntary organizations, health care professionals, health 
    plans, and State and local health agencies.
    (c) The Director shall do all of the following:
        (1) Designate a person in the Department to oversee the 
    Program.


        (2) Identify the appropriate entities to carry out the 
    Program, including, but not limited to, the following:  
    local health departments, schools, agencies on aging, 
    employer wellness programs, physicians and other health 
    professionals, hospitals, health plans and health 
    maintenance organizations, women's health organizations, 
    and nonprofit and community-based organizations.


        (3) Base the Program on the most current scientific 
    information and findings.


        (4) Work with governmental entities, community and 
    business leaders, community organizations, health care and 
    human service providers, and national, State, and local 
    organizations to coordinate efforts to maximize State 
    resources in the areas of lupus education and awareness.


        (5) Use public health institutions for dissemination 
    of medically sound health materials.


    (d) The Department shall establish and coordinate the 
Interagency and Partnership Advisory Panel on Lupus consisting 
of 15 members, one of whom shall be appointed by the Director 
as the chair.

The Panel shall be composed of:
        (1)  at least 3 individuals with lupus;

        (2) three representatives from relevant State agencies 
    including the Department;

        (3) three scientists with experience in lupus who 
    participate in various fields of scientific endeavor, 
    including, but not limited to, biomedical research, 
    social, translational, behavioral, and epidemiological 
    research, and public health;

        (4) two medical clinicians with experience in treating 
    people with lupus; and

        (5) four representatives from relevant nonprofit 
    women's and health organizations, including one 
    representative from a national organization that deals 
    with the treatment of lupus.
    Individuals and organizations may submit nominations to 
the Director to be named to the Panel.  Such nominations may 
include the following:
        (i) representatives from appropriate State departments 
    and agencies, such as entities with responsibility for 
    health disparities, public health programs, education, 
    public welfare, and women's health programs;
        (ii) health and medical professionals with expertise 
    in lupus; and
        (iii) individuals with lupus, and recognized experts 
    in the provision of health services to women, lupus 
    research, or health disparities.
    All members of the panel shall serve terms of 2 years. A 
member may be appointed to serve not more than 2 terms, whether 
or not consecutive.

A majority of the members of the panel 
shall constitute a quorum. A majority vote of a quorum shall be 
required for any official action of the Panel.

The Panel shall 
meet at the call of the chair, but not less than 2 times per 
year. All members shall serve without compensation, but shall 
be entitled to actual, necessary expenses incurred in the 
performance of their business as members of the Panel in 
accordance with the reimbursement polices for the State.
 
    Section 20. Funding. Subject to the availability of funds, 
the Department may make expenditures of up to $2,500 for fiscal 
year 2010 for use toward providing educational materials to 
clinics serving a high percentage of minorities in this State. 
The Director may accept grants, services, and property from the 
federal government, foundations, organizations, medical 
schools, and other entities as may be available for the 
purposes of fulfilling the obligations of this Program. Any 
such funds shall only supplement any appropriations made for 
the implementation of this Act. The Director shall seek any 
federal waiver or waivers that may be necessary to maximize 
funds from the federal government to implement the Program.
 
    Section 25. Staffing.  The Department of Public Health shall 
provide staffing and administrative support for the 
implementation of the provisions of this Act.