Study Shows American Indian and Alaska Native Populations Have a High Risk for Lupus
A new analysis of medical records obtained through the United States Indian Health Service estimates that the prevalence of lupus (how many people are living with the disease) and the incidence of lupus (the number of new cases developed within a specific time period) for US American Indians and Alaska Natives (AI/AN) are among the highest for any group previously reported, including rates previously reported for African Americans. The combined age-adjusted AI/AN prevalence rate was 178 cases per 100,000 persons, and the incidence rate among AI/NA populations was 7.4 per 100,000 person-years.
The estimates were developed through the first-ever population based lupus registry in the United States for the AI/NA populations, part of the National Lupus Patient Registry funded by the U.S. Centers for Disease Control and Prevention (CDC). The Lupus Foundation of America estimates that as many as 1.5 million Americans have a form of lupus.
In 2003, the Lupus Foundation of America successfully advocated for Congress to establish population-based lupus registries to better understand and measure the burden of illness, the social and economic impact of the disease, and to stimulate additional private investment by industry in the development of new, safe and more tolerable therapies for lupus.
Using data available through electronic health records from the Indian Health Service (IHS) National Data Warehouse, researchers identified cases of lupus among those who were actively seeking clinical care in 2007, 2008 and 2009 at three regional IHS offices that serve Alaska, Oklahoma City, and Phoenix. Medical investigators searched electronic records for codes entered by physicians to indicate a diagnosis of lupus, and then confirmed the diagnosis by reviewing individual medical records.
The results of the study reveal a high prevalence and incidence of lupus among the AI/AN populations. The prevalence of lupus among AI/AN women is essentially the same as the prevalence in African American women, the group with the highest prevalence.
Kidney involvement was documented in 40 percent of all cases within the IHS registry, with nearly six percent having end stage renal disease, where the kidneys are no longer able to operate at a capacity required to support activities of daily living. Kidney complications are among the most serious and life-threatening complications of lupus.
Two additional sites that are part of the CDC’s national lupus patient registries will report their data within the next two years. Data from the California and Manhattan registries will provide estimated rates for Hispanics and Asians. The five population-based lupus registries will provide important insight into population groups within the United States believed to be at risk for developing lupus.
The three sites that have reported their findings thus far, Georgia, Michigan and now Indian Health Services, are providing solid evidence that the prevalence and incidence of lupus is significantly higher than previously published estimates, demonstrating that lupus is a widespread disease which impacts the lives of millions of Americans.