Racial Discrimination, Disease Activity, and Organ Damage: The Black Women's Experiences Living With Lupus (BeWELL) Study

David H. Chae; Connor D. Martz; Thomas E. Fuller-Rowell; Erica C. Spears; Tianqi Tenchi Gao Smith; Evelyn A. Hunter; Cristina Drenkard; S. SamLim


Am J Epidemiol. 2019;188(8):1434-1443. 

In This Article


Results from the present study are concordant with those of a prior study of unfair treatment attributed to race and organ damage among black women with SLE, as well as of other research on racial discrimination and health more broadly.[63,76,77] Specifically, we found that greater frequency of racial discrimination was associated with increased SLE activity and organ damage. Our findings suggest that experiences of racial discrimination contribute to racial disparities in SLE outcomes. We leveraged a large population-based sample of black women with validated SLE, which allows us to generalize inferences about the association between racial discrimination and SLE severity to a greater diversity of patients. Our study advances knowledge in this understudied area of research.

There is a growing body of evidence indicating psychosocial stress exacerbates the clinical symptomatology of SLE and contributes to worsening health. For example, in a recent study, general perceived stress was associated with cognitive symptoms in patients with SLE.[78] Lower socioeconomic status has been associated with greater functional disability and organ damage.[21,22,79,80] Moreover, within socioeconomic strata, racial disparities in health consistently have been apparent in lower as well as higher ranges.[20,81,82] The findings of these studies suggest structural inequalities related to being a racial minority, such as those linked to racism, result in health tolls.[36,38] In addition, in carefully controlled observational research, racial disparities in SLE progression were not entirely accounted for by differences in access to health care, detection, and treatment.[16,83] Our findings indicate that racial discrimination is a unique source of stress that exerts a negative health impact even after adjustment for socioeconomic variations and differences in health-related characteristics among black women with SLE.

Our results indicate that racial discrimination is commonly reported in this population and that such experiences have negative consequences for SLE severity. For example, differential treatment in medical settings has direct implications for disease management. Supporting this finding, patient-reported racial discrimination by physicians has been associated with heightened SLE activity and depression;[39,40] this relationship may be mediated by a lack of trust in physicians, poor treatment adherence, and avoidance of care.[84] The causal effect of racial discrimination on SLE outcomes is also biologically plausible. Evidence for associations between discrimination and inflammation has been found in both cross-sectional and prospective studies;[46,47] in turn, inflammation has been strongly linked to SLE severity.[58,61,62] Furthermore, prior research suggests that black women may be particularly impacted by such experiences; they report greater distress from racial discrimination than do black men.[85] For example, in a large, multiethnic sample, among women from the general population, greater experiences of general as well as racially attributed lifetime and everyday discrimination were associated with higher levels of interleukin-6,[86] an inflammatory biomarker that is significantly elevated during periods of SLE activity. These associations, however, were mixed or of lower magnitude among men. These and other findings suggest that racial discrimination is associated with biological factors shown to aggravate SLE activity, which over time accrue and lead to irreversible physiologic damage.[17]

Several limitations of this study should be noted. Because these results are based on cross-sectional data, direction of causality is not definitive and third-variable explanations are more difficult to rule out. For example, it is possible that greater SLE activity or organ damage resulted in increased perceptions of racial discrimination. Although the interpretation of our findings is consistent with other research demonstrating a causal effect of racial discrimination on the progression of other diseases,[49,87–89] additional studies using more than 1 wave of data are an important forthcoming step. Also, although our self-reported measures of disease activity and organ damage are well-validated, additional insight may be gleaned through examination of objective health indicators (e.g., SLE-relevant biomarkers). Finally, only 1 racial and sex group was considered in a specific geographic area. Although this allowed for in-depth consideration of our hypotheses in a specific population known to be at particularly high risk for poor SLE outcomes, our results may not be generalizable to other groups not represented in our study.

Despite these limitations, our study is 1 of the largest investigations of the social epidemiology of SLE among black women. These findings point to the salience of racial discrimination in the lives of black women and its relevance to health outcomes. Although results from this study are specific to SLE, they may also have implications for other chronic conditions, particularly those mediated by inflammatory mechanisms. Our findings contribute to a growing body of research that suggests experiences of racial discrimination, as a source of psychosocial stress, can generate health inequities and accelerate progression of multiple diseases. Because inflammation is a central characteristic of SLE, it may be a particularly useful context in which to identify the mechanisms and health consequences of racial discrimination. Research that integrates biological markers of stress and inflammation may help further elucidate these relationships. Our study highlights the critical need to eliminate racial discrimination across multiple domains of society, through greater enforcement of existing antidiscrimination policies at institutional levels, including in health care settings, and addressing the perpetration of discriminatory acts in other social domains. These steps represent important components of comprehensive efforts aimed at reducing racial disparities in health.