(410 ILCS 528/5)

Sec. 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.

(Source: P.A. 96-1108, eff. 1-1-11.)