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While systemic lupus erythematosus (SLE) affects men and women of all ages, the scale shifts heavily toward women -– and even more so toward people of color. There are several leading factors, details of which continue to reveal themselves through a groundbreaking report called Lupus in Minorities: Nature Versus Nurture -- or The LUMINA Study.
Recap: Who Gets Lupus:
Out of the 1.5 million Americans afflicted with some form of lupus, 90% of those diagnosed are women, the vast majority of whom are between 15 to 45 years old, reports The Lupus Foundation of America.
Furthermore, lupus is two to three times more prevalent among people of color, including African Americans, Hispanics, Asians, and Native Americans. It often presents much earlier, with worse than average symptoms, and higher death rate –- nearly three times higher for African Americans than Caucasians, according to the Centers for Disease Control and Prevention.
Specific among ethnicities: The prevalence of kidney damage and failure and cardiac disease in Hispanic women and the increased incidence of neurological problems such as seizures, hemorrhage, and stroke, in African-American women.
The question is, why such disparity?
The LUMINA Study:
In 1993, medical researchers set out to determine why there was such disparity between lupus in Caucasians and lupus in people with color. Those researchers focused on the question of nature versus nurture.
The result, The LUMINA Study, was a multiethnic United States early cohort, meaning researchers studied various ethnicities -- in this case African Americans, Caucasians and Hispanics -- from the United States who were afflicted with lupus for 5 years or less.
A cohort study is a form of longitudinal study used in medicine and social science.
Some initial suppositions associated with the disparity, tied to the nurture question, included:
- Communication barriers (such as language differences),
- Lack of access to care,
- Lack of healthcare coverage, and
- Lower income levels.
What researchers discovered early on was that genetic and ethnic factors nature play a larger role in determining lupus prevalence than socioeconomic nurture factors. More than that, suggests the study, genetics may be the key that unlocks the reason why lupus afflicts African-American and Hispanic women more than other people of color.
Other possible reasons, however, such as medicinal treatments, were not included in the original study.
Findings:
Further findings from the LUMINA study:
- Lupus patients of Hispanic and African-American descent have more active disease at the time of diagnosis, with more serious organ system involvement.
- Caucasians were of better socioeconomic status and older than the two minority groups.
- Important predictors of disease activity in the two minority groups were variables such as abnormal illness-related behaviors.
- As time passed, the total damage became worse for the two minority groups than for the Caucasians, although the differences were not statistically significant.
- Disease activity also has emerged as an important predictor of death for this group of patients. Consistent with lower disease activity, Caucasians exhibited lower mortality rates than Hispanics or African Americans.
Ten Years Later
Scientists revisiting the LUMINA study 10 years later came to even more interesting conclusions:
- Lupus presents itself more severely in African Americans and Hispanics from Texas than Caucasians and Hispanics from Puerto Rico.
- Those patients who had a lack of health insurance, acute lupus onset, and expression of certain genetics (HLA-DRB1*01 (DR1) and C4A*3 alleles) had more severe lupus.
- The severity of damage to organs stemming from lupus or lupus side effects could be predicted based on age, number of ACR criteria met, disease activity, coricosteriod use, and abnormal illness behaviors.
- Most revealing: One of the key factors in determining mortality was where a person stood financially with respect to poverty. Lupus sufferers who were poorer financially were more apt to die from lupus or a complications stemming from the disease, in part because of limited access to healthcare.
Information from the 10-year study will be used to delve further into the nature/nurture question, and may yield new ways of focusing on and eliminating health disparities in the United States.
Sources:
Who Gets Lupus? Lupus Research Institute. December 2007.
Demographics on Lupus Lupus Foundation of America. December 2007.
Do Patients of Hispanic and African-American Ethnicity with Lupus Experience Worse Outcomes than Patients with Lupus from Other Populations? The LUMINA Study Lupus Foundation of America. September 1999.
What have we learned from a 10-year experience with the image (Lupus in Minorities; Nature vs. nurture) cohort? Where are we heading?Autoimmunity Reviews, Volume 3, Issue 4, June 2004, Pages 321-329. América G. Uribe, Gerald McGwin, John D. Reveille and Graciela S. Alarcón.
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