II 109th CONGRESS 1st Session S. 756 IN THE SENATE OF THE UNITED STATES April 11, 2005 Mr. Bennett (for himself, Mrs. Murray, Mr. Shelby, and Mr. Hatch) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions A BILL To amend the Public Health Service Act to enhance public and health professional awareness and understanding of lupus and to strengthen the Nation’s research efforts to identify the causes and cure of lupus.

1.

Short title

This Act may be cited as the Lupus Research, Education, Awareness, Communication, and Healthcare Amendments of 2005 .

2.

Table of contents

The table of contents for this Act is as follows: Sec. 1. Short title. Sec. 2. Table of contents. Sec. 3. Findings. TITLE I—Expanding and Improving Research on Lupus Sec. 101. Expansion of lupus biomedical research. Sec. 102. Strengthening lupus epidemiology; lupus study. TITLE II—Enhancing lupus awareness and education Sec. 201. Increasing public awareness and improving health professional education.

3.

Findings

Congress makes the following findings: (1) Lupus is a serious, complex, debilitating autoimmune disease that can cause inflammation and tissue damage to virtually any organ system in the body, including the skin, joints, other connective tissue, blood and blood vessels, heart, lungs, kidney, and brain. (2) The Lupus Foundation of America, Inc. estimates that approximately 1,500,000 to 2,000,000 Americans live with some form of lupus; lupus affects women 9 times more often than men and 80 percent of newly diagnosed cases of lupus develop among women of child-bearing age. (3) Lupus disproportionately affects women of color; it is 2 to 3 times more common among African-Americans, Hispanics, Asians, and Native Americans and is generally more prevalent in minority populations, a health disparity that remains unexplained. According to the Centers for Disease Control and Prevention, the rate of lupus mortality has increased since the late 1970s and is higher among older African-American women. (4) There have been no new drugs approved by the Food and Drug Administration specifically for lupus in nearly 40 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 people’s ability to live independently and 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 cost of medical treatment for an individual with lupus can range between $10,000 and $30,000; 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 to society. (7) More than 1/2 of the people with lupus suffer 4 or more years and visit 3 or more physicians before obtaining a diagnosis of lupus; early diagnosis of, and commencement of treatment for, lupus can prevent or reduce serious organ damage, disability, and death. (8) Despite the magnitude of lupus and its impact on individuals and families, health professional and public understanding of lupus remains low; only 1 of 5 Americans can provide even basic information about lupus, and awareness of lupus is lowest among adults ages 18 to 34, the age group most likely to develop symptoms of lupus. (9) Lupus is a significant national health issue that deserves a comprehensive and coordinated response by Federal and State governments with the involvement of the healthcare provider, patient, and public health communities.