Urgent need for increased awareness about lupus

May 11 2004

On Thursday, May 2, 2002, the Centers for Disease Control and Prevention (CDC) released a report, “Trends in Deaths from Systemic Lupus Erythematosus—United States, 1979-1998,” that revealed a 60-70 percent upsurge in lupus deaths over the past 20 years.  Each year during the study period, death rates were more than five times higher for women than for men, and more than three times higher for African Americans than for Caucasians.  The CDC states that the keys to preventing future deaths from lupus, in part, will require earlier recognition and diagnosis, and appropriate therapeutic management.

The S.L.E. Lupus Foundation believes that significantly raising awareness about lupus, both among women who may be at risk, as well as physicians, whose accurate diagnosis could be a matter of life or death, is critical. “Lupus has been called the ‘great imitator,’ a disease that is still misunderstood, which contributes to the widespread lack of diagnosis and misdiagnosis,” stated Margaret Dowd, executive director of the S.L.E. Lupus Foundation.  “Additionally, we haven’t had a major new treatment for lupus in more than 40 years even though no other disease has had an increasing death rate of this magnitude.”

The CDC report cites the greatest increase in lupus deaths among women and African Americans.  As a leader in public education, and in an effort to help address the needs of inner-city women with lupus, the S.L.E. Lupus Foundation launched its East Harlem Cooperative five years ago in collaboration with local community health institutions.  A national demonstration model for effective community-based outreach and management of chronic disease, this grass-roots center has provided outreach and awareness to more than 8,000 community residents and extended counseling, support and care to more than 426 patients with lupus and their families.  Based on the program’s success, the S.L.E. Lupus Foundation launched a similar program in the Bronx earlier this year.  A Brooklyn cooperative is also scheduled to open in 2004. http://www.lupusny.org

The S.L.E. Lupus Foundation is dedicated solely to fighting lupus through patient services, public education and support of research.

For additional information on the CDC report, visit: https://www.cdc.gov/