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African Americans and Lupus: Invisible No More: Key Topic at Congressional Black Caucus Annual Legislative Congress

Washington, D.C., September 9, 2004 – The urgent need for more education and research to address the fact that African American women are disproportionately impacted by the autoimmune disease lupus will be the focus of a forum on Friday, September 10 at the 34th Congressional Black Caucus Annual Legislative Conference. To be held in Washington, DC, the Forum, “African-Americans and Lupus: Invisible No More,” is sponsored by Congressman Edolphus “Ed” Towns (D-NY) and co-sponsored by the Lupus Research Institute National Coalition.

Panel discussions will feature leaders in the lupus community from medical, patient, legislative and advocacy arenas. The Forum, to be moderated by Lucille C. Norville Perez, MD, President of The Cave Institute and Past President of the National Medical Association, will educate, raise issues, and most important, issue an urgent “Call to Action” to Congress to promote a major educational campaign on health disparities in lupus and to increase funding for lupus research.

Gregory Dennis, MD, Director of Clinical Care and Training at the National Institute of Arthritis and Musculoskeletal Diseases (NIH), will provide an overview of lupus, a complex autoimmune disease that affects 1-1.5 million Americans, 90 percent of whom are women. In lupus, the body’s immune system, which normally functions to protect against foreign invaders, becomes hyperactive, forming antibodies that attack normal tissues and organs, including the skin, joints, kidneys, brain, heart, lungs and blood.  Some common symptoms include painful and swollen joints, fevers, prolonged fatigue and skin rashes.

Lupus: The African American Experience

Lupus is three times more common in black women than in white women. And, while lupus affects women in their childbearing years, the onset of lupus in African American women is earlier and causes severe organ problems.  African American people with lupus have a higher frequency of neurological problems such as seizures, hemorrhage and stroke than other patient populations. John Reveille, MD, of the University of Texas Health Science Center and lead investigator of the landmark study LUMINA (Lupus in Minorities: Nature vs. Nurture), will provide insight into these and other issues on racial disparities in lupus.

Vivian Pinn, MD, Director of the NIH Office of Research on Women’s Health, will focus on the issue as it relates to current and future directions in women’s health research.

Patient and Family Perspectives

Two women will offer perspectives on the impact of lupus on the patient and family. Judith Anderson of Buffalo, New York, who has lupus, has been proactive for the past 14 years educating those affected with the disease as well as the medical community. Her main focus in education has been in the African American and Hispanic communities. Another woman, Myna Majors of New York City, will speak about her daughter’s struggle with lupus and the devastating effect of this disease on her family. A special feature of her presentation will be a performance of poetry reading, a technique she developed to help others understand what lupus is all about.

Community Awareness and Education

Frances Ashe-Goins, RN, MPH, Deputy Director of the U.S. Department of Health and Human Services (DHHS) Office on Women’s Health, will discuss the need for community education and outreach on lupus in the African-American community, and will describe programs and initiatives of the Office on Women’s Health. Margaret Dowd, Executive Director of the S.L.E. Lupus Foundation in New York, will describe the New York City Lupus Cooperative, a collaborative program consisting of an integrated network of health and supportive services to improve the care and quality of life for people with lupus and their families in underserved New York City communities.

The Forum will conclude with a “Call to Action,” issued by former Congresswoman Carrie Meek, urging the Federal Government and the United States Congress to make a serious and ongoing commitment to fight this debilitating disease.

The Congressional Black Caucus is a non-partisan, non-profit, public policy institute formed in 1976 to stimulate education and discussion among African Americans about legislative and public policy issues relevant to this community. The annual legislative conference draws close to 30,000 people.

The Lupus Research Institute National Coalition is a new advocacy network of state and local lupus organizations and other supportive groups united to promote increased education and awareness of the seriousness of lupus and the need for increased research.

The Lupus Research Institute acknowledges with gratitude support for this Forum from La Jolla Pharmaceutical Company.

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