To correctly address a problem, one must have a handle on its nuances—a clear understanding of what is linked and how. And thus far, when it comes to lupus, we haven’t reached the point of understanding those intricacies.
Things are heading in the right direction, however, with two new studies that get us much closer to untangling the relationships among lupus, poverty, race and ethnicity.
Edward Yelin, PhD, is professor emeritus at the University of California, San Francisco. His work, “A Prospective Study of the Impact of Current Poverty, History of Poverty, and Exiting Poverty on Accumulation of Disease Damage in SLE,” was recently published in Arthritis & Rheumatology.1
Dr. Yelin says, “We already know that racial and ethnic minorities are more likely to be diagnosed with lupus than are Caucasians. However, after the onset of the disease, it is not race or ethnicity that primarily drives the differences in outcomes. There is a solid history of literature indicating that it is poverty or other socioeconomic issues.”
The question, says Dr. Yelin, is “Why?”
In an attempt to tease out the answer to this and other questions, Dr. Yelin and his colleagues followed 783 lupus patients from 2003 to 2015, focusing on the extent of disease damage experienced by each participant.
“One question that arose was, ‘Is it poverty itself that poses the problem, or is it something to do with the personality of those who tend to be poor?’ We postulated that the number of years a lupus patient had been poor has a strong relationship with how much disease damage they had suffered. Although we could not randomize people to poverty, we were able to observe whether people who left poverty had better outcomes—and indeed they did.”
Length of Time in Poverty Matters
Elaborating on this sociological dose-response relationship between poverty and lupus-related damage, Dr. Yelin notes, “We found that the longer people lived in poverty, the more disease damage they sustained. Those who were able to permanently transition out of poverty did have similar increases in damage as those who were never in poverty, but it was not as severe as those who remained poor.”
Given that lifting large numbers of patients out of poverty is a supremely challenging, long-term goal, Dr. Yelin and his colleagues wanted to find out what else was going on. Perhaps there were things occurring at a micro, daily level that could be amenable to improvements. And although they found them, the fact is that there are no simple answers.
“In studies of social determinants of health, we often hear the saying that ‘poverty gets under the skin.’ We wanted to know what these mechanisms are that translate into having a poverty-level income that, in turn, means an increased risk for lupus damage.”
“This work revealed that the daily experience of chronic stress—food, housing and medical care insecurity—is a strong determinant of the extent of lupus-related damage. The mechanism is likely that when you are living with this type of chronic stress, securing food and housing takes precedence, and thus, people relegate dealing with their SLE [systemic lupus erythematosus] to the back burner, except when a flare demands their immediate attention.”
Personal Problems Are Also Societal
At the end of their study, Dr. Yelin and his colleagues conducted qualitative interviews that focused on what stressors the patients found to be particularly debilitating. “We found that exposure to crime or fear of crime in their neighborhoods stood out as an important factor. A picture is emerging that shows us that it takes far more than great medical care to get good results for lupus patients. It raises the hard questions of what the proper role of healthcare providers is. We cannot ask [healthcare providers] to deal with these powerful societal forces that have kept people in poverty for multiple generations.”
And yet the answer is not to turn away from the problem. “There are many physicians who practice in the public health system who deal with these issues on a daily basis. In addition, as a society, we must turn our attention to the intersection between health and housing. Our quantitative data showed those who exited poverty were able to get back on track to a certain extent with regard to their disease. We need to examine the question of whether people with the disease should be aided in the attempt to move out of poor neighborhoods.”
Physicians want to do medicine. But as in anatomy with, for example, hip and spine pain being interrelated, lupus is related to its environment. Doctors and patients will lag behind in outcomes as long as such peripheral issues are left unaddressed.
Dr. Yelin says, “It is now clear that even in autoimmune diseases in people with profound genetic predispositions, we cannot ignore patients’ social environments.” Doing so can even encumber the lives of the next generation.
Pregnancy & Lupus
Jane Salmon, MD, is professor of medicine and professor of obstetrics and gynecology at Weill Cornell College of Medicine and the Collette Kean Research Professor at Hospital for Special Surgery in New York. Her recent work, published in Arthritis Care & Research, has uncovered evidence that black and Hispanic patients with lupus are more likely to experience pregnancy complications than are white women with the disease.2
Dr. Salmon, director of the Lupus and Antiphospholipid (APS) Center of Excellence at the Hospital for Special Surgery, says, “Lupus is a disease of women in their reproductive years, and pregnancy is always stressful for these patients. There are significant racial disparities in frequency of adverse pregnancy outcomes. Black and Hispanic women with lupus are more likely to have complicated pregnancies. We wanted to dig a bit deeper, and try to untangle the factors that comprise the race/ethnicity variable. Were differences related to genetic factors or driven by socioeconomic status?”
Dr. Salmon and her team utilized data from the multicenter prospective Predictors of Pregnancy Outcome in Systemic Lupus Erythematosus (SLE) and Antiphospholipid Syndrome (PROMISSE) study, and were able to examine outcomes of pregnancies for 408 women with lupus. Patient variables they considered were race and ethnicity, clinical predictors of poor pregnancy outcomes and socioeconomic measures. Adverse pregnancy outcomes included fetal or neonatal death, preterm delivery due to preeclampsia and fetal growth restriction.”
Researchers Puzzled about Similar Circumstances
Dr. Salmon explains, “One thing that has plagued us as we collected pregnancy outcomes over the 11 years of the PROMISSE study was that minority patients fared worse. We found this both fascinating and frustrating, and we couldn’t understand why. They were cared for by the same doctors, they did not have more missed visits than their white counterparts, and they did not have more flares in lupus disease activity.”
To ascertain the nuances involved, Dr. Salmon and her team had to be a bit creative. “We didn’t have personal income data, so we used ZIP codes and U.S. census data to derive median community income. Patients told us their levels of educational attainment.”
“We knew, going into the study, that antiphospholipid antibodies (aPL) were the strongest risk factor for adverse pregnancy outcomes in lupus patients. Interestingly, we found that among all racial/ethnic groups, those with aPL had much worse outcomes, and neither clinical nor socioeconomic factors accounted for this. However, when we looked at SLE patients without aPL, after we adjusted for socioeconomic variables, there were no longer differences in outcome for any minority women compared to white lupus patients. Black women appeared to be at greatest risk for the influence of socioeconomic factors.
“Specifically,” states Dr. Salmon, “White women with lupus with aPL had an adverse pregnancy outcome rate of 29% compared to 11% in white lupus patients without aPL. For black and Hispanic women with or without aPL, the frequency of adverse outcomes was approximately two times greater than that in white women with or without aPL, respectively. It reached 60% in black women with aPL.”
It’s Not Just Access
Every patient in the PROMISSE study was seen monthly by rheumatologists and/or obstetricians with expertise in lupus pregnancy, and compliance with study visits did not vary with race/ethnicity. “It was surprising,” says Dr. Salmon, “to see that the problem was the socioeconomic factors, personal education, median community income and median community education. It is clearly not just access to care that is an issue.”
What makes these patients different? “In PROMISSE, we observed health outcome disparities in the absence of healthcare disparities. Non-white patients came to doctor visits and had the same level of healthcare as the white patients. Is it stress from poverty or lack of social support? Were they taking their medications? Did they understand the physician’s instructions? It’s easy for scientists to say, ‘It’s genetics,’ but there is solid research indicating that we may be glossing over the social determinants of health disparities. We must consider the other aspect of our patients’ lives—social position—which is causally linked to health.”
Dr. Salmon notes, “I don’t believe the problem is communication between doctor and patient. I think it may be related to patient education, trust and social support structure. We must carefully look at social factors within these communities.”
But where to begin?
Dr. Salmon says, “We need to use the best instruments to assess socioeconomic and environmental factors, as well as the importance of genetic risk factors, in another prospective study designed to assess all of these variables at the individual patient level. And we must be vigilant about providing community-based education and support in pregnant lupus patients at increased risk of complications.”
To go forward, we need to go backward … back to the data with more questions. Then we can progress toward addressing the specific, daily needs of lupus patients.
Elizabeth Hofheinz, MPH, MEd, is a freelance medical editor and writer based in the Greater New Orleans area.
- Yelin E, Trupin L, Yazdany J. A prospective study of the impact of current poverty, history of poverty, and exiting poverty on accumulation of disease damage in SLE. Arthritis Rheumatol. 2017 Aug;69(8):1612–1622.
- Kaplowitz ET, Ferguson S, Guerra M, et al. Socioeconomic status contributes to racial/ethnic disparities in adverse pregnancy outcomes among women with systemic lupus erythematosus. Arthritis Care Res (Hoboken). 2017 May 8. doi: 10.1002/acr.23263. [Epub ahead of print]