Illinois General Assembly - Full Text of Public Act 096-1108
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Public Act 096-1108




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
        (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
    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
    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
        (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
        (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.

Effective Date: 1/1/2011