Lupus, the complex and poorly understood auto-immune disorder that causes rashes, fatigue, joint swelling, and other symptoms, has become more visible for Americans in recent years. Prominent celebrities like Selena Gomez have come out about their struggles with the disease, and have been very vocal about the need to raise awareness about it. We've known that lupus disproportionately affects women; according to the Lupus Research Alliance, 90 percent of the people diagnosed with it are young women. But new studies have revealed that there are even greater disparities among who gets lupus than across gender lines. They found that Black and Hispanic women are diagnosed with lupus at much higher rates than white women, and are more likely to experience complications from the disease.
Talking about racial disparities in illness is never just a matter of genetics. Environmental racism, and differences in access to healthcare, create all sorts of varied health outcomes that can't be explained just by the genome. When you start to try to understand why non-white women are so much more vulnerable to lupus — and, according to the new research, actually experience it more severely — it becomes clear how important it is to look at environmental racism and how it can affect women.
What The Studies Say
The two recent studies were looking at the same illness — SLE or systemic lupus erythematosus, the most common version of lupus — but they took on two different approaches. One, the Manhattan Lupus Surveillance Program, looked at the Manhattan area, and tracked lupus among the population between 2007 and 2009. The other looked instead at people with lupus enrolled in Medicaid between 2000 and 2010, in 29 states. They were both looking at how lupus seems to affect different racial groups, and the results may blow your mind.
In Manhattan alone, the differences in lupus diagnosis between different groups of women were pretty remarkable. White women's rates of lupus were 51.4 per 100,000 per year; Black women, meanwhile, were diagnosed at a rate of 133.1 women per 100,000 women, Hispanic women at 142.7 and Asian women at 118.5. Even if your math isn't great, you can see that there's a big difference there.
By comparison, the other study found that, when income levels were lowered, the racial disparities evened out a little bit: across 29 states, 91.3 percent of lupus sufferers using Medicaid were women, 42 percent were black, 38 percent were white, 16 percent were Hispanic, and only 3 percent were Asian. Therefore, looking across the two studies suggests that income levels may affect how women experience lupus.
Lupus systematically attacks organs and tissue, making sufferers more vulnerable to issues like kidney disease and heart problems. The Manhattan study found that, among all genders, 25.4 percent of white lupus sufferers had kidney diseases, compared to 49.4 percent of Hispanics and 53.2 percent of Asians. In the more expansive sample of the Medicaid study, Black lupus patients were more at risk of cardiovascular disease and stroke than white ones, while Hispanics were more at risk for stroke. Interestingly, though, Asians and Hispanics were less likely than white patients to have a heart attack.
What's Causing Lupus To Affect Women Of Color Disproportionately?
There have been two other studies, one in Michigan (with 2,278 patients) and one in Georgia (with 267 patients), that examined racial divides among lupus sufferers. The researchers that focused on Medicaid users released another study in 2015, also using Medicaid data, that looked at lupus deaths across the U.S. In that one, they found that Native Americans on Medicaid were most at risk of death from complications of lupus, followed by Black and white populations; Hispanic and Asian patients were a bit less at risk. Yes, lupus kills.
The Georgia study found that young Black women are particularly at risk. "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,” Dr. S. Sam Lim, who led the study, told the Lupus Foundation of America. So what's going on to cause the big racial differences?
In an editorial for Arthritis & Rheumatology, the editors of the journal point out that there's an interesting parallel study from Canadian researchers that might shed some light on how income levels and race intersect to influence outcomes in women with lupus. In that study, Asian people with lupus had fewer strokes and heart attacks than white people, and Native Canadians had more specific problems with strokes and blood disorders. The less access they had to healthcare due to cost, the worse the Canadian patients were. This suggests that the solution to the problem might be partially genetic and partially societal.
Poverty, which affects many Americans along racial lines, has a big impact on how severe lupus can get and how well it can be treated; it creates more stress, makes it more difficult to get medication or to take proper healthcare steps, and may mean people don't get proper care and so aren't diagnosed properly. (Diagnosis is a big problem with lupus because it often looks like other illnesses, and therefore can be misdiagnosed.) But the big, complex results these new studies have revealed indicate that there are a lot of things at play here. There's now some science to suggest that Black women in particular might have a genetic susceptibility to lupus, and the LUMINA (Lupus In Minorities) study performed on women across the U.S. from 1993 onwards has revealed that two particular genes seem to be associated with worse lupus illness in minority women. This is important because it might suggest genetic-based treatments in the future.
Overall, the picture of lupus in women of color is diverse and complicated, and a lot more research is needed to help us understand precisely what's going on, from discrimination and poverty to genetic susceptibility. If you do suspect that you might have lupus symptoms, see your GP immediately; early diagnosis is extremely important for treatment.