Major Report to Congress by Secretary of Health and Human Services Documents Need for National Lupus Health Education Program
New report resulting from Lupus Research Institute’s congressional advocacy describes state of lupus research, impact of disease, and barriers to care
Friday, January 22, 2010
A major report on lupus from the Secretary of Health and Human Services to the U.S. Congress this week reviews the state of the disease and documents the need for a comprehensive national provider health education program to help eliminate the barriers of racial disparities in the early medical diagnosis and treatment of lupus.
The report was the result of advocacy by the Lupus Research Institute's National Coalition of state and local lupus organizations. The LRI National Coalition (LRI) vigorously petitioned for congressional funding for a new National Lupus Health Education Program for physicians and healthcare providers, successfully working to secure federal funding of $2.6 million to date to advance needed professional education about lupus.
The new education program is led by the Office of Minority Health in the federal Department of Health and Human Services in partnership with the U.S. Surgeon General and the Office of Women's Health and implemented through the American College of Rheumatology (ACR).
The Secretary's report highlights the effect of disparities on lupus patients, stating that "many still die prematurely from lupus because of complications of the disease, late diagnosis and co-occurring chronic conditions."
It also documents the need for health education efforts, noting that "until researchers discover a cure or new ways of identifying at-risk individuals as well as diagnosing and treating lupus, educating health care professionals about the importance of early diagnosis and teaching patients how to manage and cope with lupus providesthe best opportunity for improving quality of life for patients and for controlling morbidity and mortality."
"We are delighted that a wide spectrum of federal agencies and leading medical, research, and health organizations across the country will now collaborate on this crucial health education program," said LRI President Margaret G. Dowd. "The program rollout began with a kick-off meeting last week in Atlanta hosted by the ACR."
The LRI National Coalition is committed to ongoing advocacy leadership in advancing additional federal funding for this crucial national lupus education program, she added.
"This National Lupus Health Education Program is a hallmark event in a 10-year effort by LRI National Coalition members to bring attention to the issues of racial disparity and support to the needs of people with lupus, particularly those in underserved communities," said Dowd.
Systemic lupus erythematosus (S.L.E.), commonly called lupus, is a chronic and potentially fatal autoimmune disorder and one of the nation's least recognized major diseases. In lupus, the body's immune system forms antibodies that can attack virtually any healthy organ or tissue, from the kidneys to the brain, heart, lungs, skin, joints and blood.
About 90 percent of those diagnosed with lupus are women. African-American women are about three times more likely to develop lupus, and it is also more common in Hispanic, Asian and American Indian women. Lupus is a leading cause of cardiovascular disease, kidney disease, and stroke among young women.
No new treatments for lupus have been approved in 50 years.
The Lupus Research Institute: Pioneering discovery to prevent, treat, and cure lupus.
The Lupus Research Institute (LRI) is the world's leading private supporter of innovative research in lupus. The LRI champions scientific creativity and risk-taking in the hunt for solutions to this complex and dangerous autoimmune disease. Founded by families and shaped by scientists, the LRI mandates sound science and rigorous peer review to uncover and support only the highest-ranked novel research. It is the only lupus organization to receive an A+ rating by the American Institute of Philanthropy, directly channeling 96 cents of every dollar donated right back to the programs supporting brilliant and determined lupus researchers. The LRI's bold and proven research strategy consistently achieves the insights, breakthroughs, and solid results that are changing the course of lupus research and bringing new hope to people with lupus nationwide and around the world.
The LRI's advocacy arm is its National Coalition, a powerful network of state and local lupus organizations united to prevent, treat and cure lupus by advocating for lupus on Capitol Hill. The Coalition unites lupus groups from both coasts and the nation's major urban centers-New York, Chicago, Los Angeles, San Francisco, and Washington, D.C.
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