There is an urgent need for more education and research to address the fact that minority women are disproportionately impacted by the autoimmune disease lupus, according to an expert panel speaking at the roundtable forum, "Racial Disparities in Lupus: Strategies for Intervention in Minority Communities," sponsored by the S.L.E. Lupus Foundation and the New York City Health and Hospitals Corporation, as part of the 7th International Congress on S.L.E. and Related Conditions.
In conjunction with the event, Benjamin Chu, MD, MPH, President of the New York City Health and Hospitals Corporation (HHC), presented a proclamation from the Mayor's Office at Gracie Mansion calling for more attention to lupus as a serious health threat to women. Congressman Charles B. Rangel, 15th Congressional District, New York, ranking member of the House Ways and Means Committee and dean of the New York Congressional Delegation, offered welcoming remarks and commented on the issues of the Forum.
"This Forum kicks off a year-long campaign in which New York City health organizations and lupus organizations are joining forces to raise awareness and understanding of lupus and to encourage early detection, particularly in minority women," said Margaret Dowd, Executive Director, S.L.E. Lupus Foundation, one of the country's leading lupus organizations with headquarters in New York and Los Angeles.
"There is mounting evidence that Hispanic and African American women have a higher incidence of lupus, more serious complications and higher mortality rates," noted John D. Reveille, MD, Director, Division of Rheumatology and Clinical Immunogenetics, University of Texas-Houston Health Science Center.
"Lupus is one of Americas' least-recognized diseases in terms of public awareness and medical attention in proportion to the number of people it affects and its severity." Lupus is a chronic autoimmune disorder that primarily attacks women of childbearing age and can affect virtually any organ of the body.
The body's immune system, which normally functions to protect against foreign invaders, becomes hyperactive, forming antibodies that attack normal tissues and organs. It is estimated that approximately 1-1.5 million Americans may have lupus.
Females are at greatest risk; 90% of Americans with lupus are women. The ongoing NIH study, LUMINA (Lupus in Minorities: Nature versus Nurture), which began in 1993, found that Hispanic and African American patients tend to develop lupus earlier in life, experience greater disease activity and more severe disease than Caucasians.
Hispanic women have a poorer prognosis overall and are more likely to have kidney damage. "Three factors-disease activity, disease damage, and poverty-appear to be the most important determinants of mortality in multi-ethnic lupus patients in the US," said Dr. Reveille. Ellen Ginzler, MD, MPH, Chief of Rheumatology, SUNY Downstate Medical Center, New York, noted that the average annual cost to treat lupus is estimated at $6,000-10,000 per person.
The cost of medications can exceed several thousand dollars/month. Other costs may include hospitalization and kidney dialysis. "In the past, hospitals have passively waited until patients with episodes of illness came through the doors for care," said Dr. Chu. "Now we are developing disease registries to track and improve care for the patients we serve. A registry like the one HCC is using for cardiovascular and other diseases could also be developed for lupus patients.
Intervening to treat lupus earlier, including referrals and access to specialty care, would go a long way toward making a difference in outcomes." Frances E. Ashe-Goins, RN, MPH, Deputy Director, Office on Women's Health (OWH), US Dept. of Health and Human Services, discussed OWH strategies for reduction of health disparities for women with lupus, including regional scientific educational sessions, national community outreach awareness programs, state of the science seminars, and medical professional education programs including nursing organizations.
Ms. Dowd described the NYC Lupus Cooperative (NYCLC)-- a collaborative program consisting of an integrated network of health and supportive services to improve the care and quality of life for lupus patients and their families in underserved New York City communities. NYCLC centers in East Harlem and the South Bronx have reached out to more than 30,000 people-primarily young, female Hispanics and African Americans -- and provided direct client services to close to 900 people.
For further information, call the S.L.E. Lupus Foundation at 1-800-74-LUPUS, or in New York City, 212-685-4118. http://www.lupusny.org/