We need accurate statistics on the incidence and prevalence of lupus and its associated rate of mortality and a much more robust public and private lupus research effort on lupus.
Black Women Develop Lupus at Younger Age with More Life-Threatening Complications
There are substantial racial disparities in the burden of lupus, according to initial data from the largest and most far-reaching epidemiology study ever conducted on the disease lupus and published online today by the journal, Arthritis and Rheumatism and in print in a 2014 issue of the journal. New data from two registries, part of the National Lupus Patient Registry (NLPR), also reveal that black females disproportionately are burdened by lupus, a devastating and complicated autoimmune disease.
An extensive review of records from hospitals, specialists’ offices and clinical laboratories within Georgia and Michigan showed blacks had an increased proportion of lupus-related renal (kidney) disease and progression to end-stage renal disease than whites, and that black females developed lupus at a younger age than white females.
The National Lupus Patient Registry is the first comprehensive population-based epidemiology study in lupus, with five registry sites located in Georgia, Michigan, California, New York and the Indian Health Service. The sites are collaborating to use similar case definitions and data collection procedures to capture diagnosed lupus in these areas and allow more accurate data comparison, critical in assessing this complicated disease. The Georgia and Michigan sites are the first to report their findings.
With a grant and under direction of the Centers for Disease Control and Prevention and in partnership with the Georgia and Michigan state health departments, investigators from Emory University and the University of Michigan led this landmark epidemiology study to include blacks and whites of all ages.
“Black women had very high rates of lupus, with an incidence rate in Georgia nearly three times higher than that for white women, with significantly high rates in the 30-39 age group,” said Georgia principal investigator, S. Sam Lim, MD, MPH, Emory University, Department of Medicine, Division of Rheumatology, Atlanta, Georgia. “These are young women in the prime of their careers, family and fertility. This means a severely compromised future, with a disease that waxes and wanes, affecting every aspect of daily living for the rest of their lives.”
“We found a striking difference in patterns of lupus between the black and white populations, which may help us better assess risk for developing this disease,” explained Michigan principal investigator, Emily C. Somers, PhD, ScM, University of Michigan, Departments of Internal Medicine, Environmental Health Sciences, and Obstetrics & Gynecology, Ann Arbor, MI. “Not only was the peak risk of lupus earlier among black females, but a higher proportion also developed severe or life-threatening complications of lupus, such as neurologic or kidney disease, including end-stage renal disease. Healthcare providers caring for this population should be aware of the importance of screening for early signs of lupus, in particular kidney disease.”
“The results just from these two registries illuminate the enormous burden of lupus among young women in the prime of their life,” said Sandra C. Raymond, President & CEO, the Lupus Foundation of America. “But data from these sites represent only the tip of the iceberg. Lupus is a complex and diverse disease that can take many forms. We need a more complete understanding of the impact of all forms of lupus among all populations at risk for developing the disease. The data from the next three sites will help to fill in gaps and document the urgent need to elevate lupus to a national health priority.”
Preliminary data from the Indian Health Service study will be presented during the American College of Rheumatology Annual Scientific Meeting, October 25-30, 2013 in San Diego, CA.
The Georgia and Michigan investigators noted the challenges with diagnosing lupus, stating that likely there remain undiagnosed cases in the community and that applying more up-to-date diagnostic criteria might result in even higher incidence and prevalence rates. The investigators also said they plan to use the lupus patient registries to recruit cohorts for ongoing studies to document the progression of the disease and determine the economic burden of lupus over time which, according to data already available, is substantial.
“The purpose of the National Lupus Patient Registry is to develop more complete population-based incidence and prevalence estimates and to assess the impact of lupus,” said Charles Helmick, MD, medical epidemiologist, Centers for Disease Control and Prevention.
“The results of previous lupus epidemiology studies have varied widely for a number of reasons, including lack of representation of populations at high risk, different case definitions, and limited or small source populations. The Georgia and Michigan studies include four counties with a combined population of nearly four million people. The large surveillance population, along with the extensive review of records from many sources, has resulted in the most reliable and up-to-date statistics for lupus,” said Helmick.
Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with and a challenge to treat. Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack. Lupus is debilitating and destructive and can be fatal, yet research on lupus has not kept pace with research for other diseases of similar scope and devastation.
About the Lupus Foundation of America
The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, the Foundation leads the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at lupus.org. For the latest news and updates, follow us on Twitter and Facebook.