96TH GENERAL ASSEMBLY
State of Illinois
2009 and 2010
SB2522

 

Introduced 1/12/2010, by Sen. Mattie Hunter

 

SYNOPSIS AS INTRODUCED:
 
New Act
20 ILCS 2310/2310-377 rep.

    Creates the Lupus Education and Awareness Act. Establishes the Lupus Education and Awareness Program within the Department of Public Health subject to appropriation. Provides that the Program shall raise public awareness, educate consumers, and educate and train health professionals, human service providers, and other audiences. Sets forth the responsibilities of the Director of the Department of Public Health concerning the Program. Provides that the Department shall establish and coordinate the Interagency and Partnership Advisory Panel on Lupus. Sets forth the membership guidelines and duties of the Panel. Provides that subject to appropriation, the Department may make expenditures of up to $2,500 for the fiscal year 2010 for use toward providing educational materials to clinics. Amends the Department of Public Health Powers and Duties Law of the Civil Administrative Code. Repeals the Section concerning lupus education and outreach.


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FISCAL NOTE ACT MAY APPLY

 

 

A BILL FOR

 

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1     AN ACT concerning public health.
 
2     Be it enacted by the People of the State of Illinois,
3 represented in the General Assembly:
 
4     Section 1. Short title. This Act may be cited as the Lupus
5 Education and Awareness Act.
 
6     Section 5. Legislative findings and purpose.
7     (a) The General Assembly finds the following:
8         (1) Lupus is an urgent national health issue. Lupus is
9     the result of an immune system that is unbalanced and can
10     become destructive to any organ or tissue in the body.
11     Lupus is unpredictable and potentially fatal, yet no
12     satisfactory treatment exists. Its health consequences
13     include heart attacks, strokes, seizures, and organ
14     failure.
15         (2) The Lupus Foundation of America, Inc. estimates
16     that more than 1.5 million Americans live with some form of
17     lupus; lupus affects women 9 times more often than men, and
18     80% of newly diagnosed cases of lupus develop among women
19     of childbearing age. An estimated 65,000 people with lupus
20     reside in Illinois.
21         (3) Lupus disproportionately affects women of color;
22     it is 2 to 3 times more common among African Americans,
23     Hispanics and Latinos, Asians, and Native Americans and is

 

 

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1     generally more prevalent in minority populations, a health
2     disparity that remains unexplained.
3         (4) No new drugs have been approved by the U.S. Food
4     and Drug Administration specifically for lupus in 50 years
5     and, while current treatments for the disease can be
6     effective, they can lead to damaging side effects.
7         (5) The pain and fatigue associated with lupus can
8     threaten one's ability to live independently and make it
9     difficult to maintain employment and lead a normal life.
10     One in 5 people with lupus is disabled by the disease and
11     consequently receives support from government programs,
12     including Medicare, Medicaid, Social Security Disability,
13     and Social Security Supplemental Income.
14         (6) The estimated average annual total of direct and
15     indirect costs for an individual with lupus is $21,000; for
16     people who have the most serious form of lupus, medical
17     costs can greatly exceed this amount, causing a significant
18     economic, emotional, and social burden to the entire family
19     and society.
20     (b) The purpose of this Act is to create a multi-pronged,
21 statewide program to promote public and health professional
22 awareness among State and local health and human services
23 officials, physicians, nurses, and other health care providers
24 and increase knowledge concerning the causes and consequences
25 of lupus, the importance of early diagnosis and appropriate
26 management, and effective treatment and management strategies

 

 

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1 by taking the following actions:
2         (1) Conducting educational and training programs for
3     health professionals on lupus diagnosis and management.
4         (2) Disseminating medically sound educational
5     materials and information on lupus research findings to
6     patients and health care professionals.
7         (3) Fostering greater public understanding and
8     awareness of lupus statewide.
 
9     Section 10. Definitions. For the purpose of this Act:
10     "Department" means the Department of Public Health.
11     "Director" means the Director of the Department of Public
12 Health.
13     "Panel" means the Interagency and Partnership Advisory
14 Panel on Lupus.
15     "Program" means the Lupus Education and Awareness Program
16 (LEAP).
 
17     Section 15. Establishment of the Lupus Education and
18 Awareness Program.
19     (a) Subject to appropriation, there is created within the
20 Department of Public Health the Lupus Education and Awareness
21 Program (LEAP). The Program shall be composed of various
22 components, including, but not limited to, public awareness
23 activities and professional education programs. The
24 Interagency and Partnership Advisory Panel on Lupus is created

 

 

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1 to oversee LEAP and advise the Department in implementing LEAP.
2     (b) The Department shall establish, promote, and maintain
3 the Lupus Education and Awareness Program with an emphasis on
4 minority populations and at-risk communities in order to raise
5 public awareness, educate consumers, and educate and train
6 health professionals, human service providers, and other
7 audiences.
8     The Department shall work with the Lupus Foundation of
9 America, Inc. to implement programs to raise public awareness
10 about the symptoms and nature of lupus, personal risk factors,
11 and options for diagnosing and treating the disease, with a
12 particular focus on populations at elevated risk for lupus,
13 including women and communities of color.
14     The Program shall include initiatives to educate and train
15 physicians, health care professionals, and other service
16 providers on the most up-to-date and accurate scientific and
17 medical information regarding lupus diagnosis, treatment,
18 risks and benefits of medications, research advances, and
19 therapeutic decision making, including medical best practices
20 for detecting and treating the disease in special populations.
21 These activities shall include, but not be limited to, all of
22 the following:
23         (1) Distribution of medically-sound health information
24     produced by the Lupus Foundation of America, Inc. and
25     government agencies, including, but not limited to, the
26     National Institutes of Health, the Centers for Disease

 

 

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1     Control and Prevention, and the Social Security
2     Administration, through local health departments, schools,
3     agencies on aging, employer wellness programs, physicians
4     and other health professionals, hospitals, health plans
5     and health maintenance organizations, women's health
6     programs, and nonprofit and community-based organizations.
7         (2) Development of educational materials for health
8     professionals that identify the latest scientific and
9     medical information and clinical applications.
10         (3) Working to increase knowledge among physicians,
11     nurses, and health and human services professionals about
12     the importance of lupus diagnosis, treatment, and
13     rehabilitation.
14         (4) Support of continuing medical education programs
15     presented by the leading State academic institutions by
16     providing them with the most up-to-date information.
17         (5) Providing statewide workshops and seminars for
18     in-depth professional development regarding the care and
19     management of patients with lupus in order to bring the
20     latest information on clinical advances to care providers.
21         (6) Development and maintenance of a directory of
22     lupus-related services and lupus health care providers
23     with specialization in services to diagnose and treat
24     lupus. The Department shall disseminate this directory to
25     all stakeholders, including, but not limited to,
26     individuals with lupus, families, and representatives from

 

 

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1     voluntary organizations, health care professionals, health
2     plans, and State and local health agencies.
3     (c) The Director shall do all of the following:
4         (1) Designate a person in the Department to oversee the
5     Program.
6         (2) Identify the appropriate entities to carry out the
7     Program, including, but not limited to, the following:
8     local health departments, schools, agencies on aging,
9     employer wellness programs, physicians and other health
10     professionals, hospitals, health plans and health
11     maintenance organizations, women's health organizations,
12     and nonprofit and community-based organizations.
13         (3) Base the Program on the most current scientific
14     information and findings.
15         (4) Work with governmental entities, community and
16     business leaders, community organizations, health care and
17     human service providers, and national, State, and local
18     organizations to coordinate efforts to maximize State
19     resources in the areas of lupus education and awareness.
20         (5) Use public health institutions for dissemination
21     of medically sound health materials.
22     (d) The Department shall establish and coordinate the
23 Interagency and Partnership Advisory Panel on Lupus consisting
24 of 15 members, one of whom shall be appointed by the Director
25 as the chair. The Panel shall be composed of:
26         (1) at least 3 individuals with lupus;

 

 

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1         (2) three representatives from relevant State agencies
2     including the Department;
3         (3) three scientists with experience in lupus who
4     participate in various fields of scientific endeavor,
5     including, but not limited to, biomedical research,
6     social, translational, behavioral, and epidemiological
7     research, and public health;
8         (4) two medical clinicians with experience in treating
9     people with lupus; and
10         (5) four representatives from relevant nonprofit
11     women's and health organizations, including one
12     representative from the Lupus Foundation of America, Inc.
13     Individuals and organizations may submit nominations to
14 the Director to be named to the Panel. Such nominations may
15 include the following:
16         (i) representatives from appropriate State departments
17     and agencies, such as entities with responsibility for
18     health disparities, public health programs, education,
19     public welfare, and women's health programs;
20         (ii) health and medical professionals with expertise
21     in lupus; and
22         (iii) individuals with lupus, and recognized experts
23     in the provision of health services to women, lupus
24     research, or health disparities.
25     All members of the Panel shall serve terms of 2 years. A
26 member may be appointed to serve not more than 2 terms, whether

 

 

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1 or not consecutive. A majority of the members of the Panel
2 shall constitute a quorum. A majority vote of a quorum shall be
3 required for any official action of the Panel. The Panel shall
4 meet at the call of the chair, but not less than 2 times per
5 year. All members shall serve without compensation, but shall
6 be entitled to actual, necessary expenses incurred in the
7 performance of their business as members of the Panel in
8 accordance with the reimbursement polices for the State.
 
9     Section 20. Funding. Subject to appropriation, the
10 Department may make expenditures of up to $2,500 for Fiscal
11 year 2010 for use toward providing educational materials to
12 clinics serving a high percentage of minorities in this State.
13 The Director may accept grants, services, and property from the
14 federal government, foundations, organizations, medical
15 schools, and other entities as may be available for the
16 purposes of fulfilling the obligations of this Program. Any
17 such funds shall only supplement any appropriations made for
18 the implementation of this Act. The Director shall seek any
19 federal waiver or waivers that may be necessary to maximize
20 funds from the federal government to implement the Program.
 
21     (20 ILCS 2310/2310-377 rep.)
22     Section 25. The Department of Public Health Powers and
23 Duties Law of the Civil Administrative Code of Illinois is
24 amended by repealing Section 2310-377.