Race, poverty, healthcare access influence disparities in lupus care
AIM program established to focus on social determinants of disease outcomes
Disparities in lupus care and outcomes in the U.S. are influenced by structural and social determinants such as race, ethnicity, socioeconomics, education, and healthcare access.
These are the findings of a study by the Lupus Foundation of America (LFA) through its Addressing health Inequities in Minorities (AIM) program, which was established to identify and target the causes of racial and ethnic disparities in lupus, with a focus on social determinants.
“By identifying these social determinants of health, we can develop targeted interventions and strategies to improve lupus care and outcomes within historically marginalized and underserved communities so the people who experience the greatest burden of disease can lead a high quality, productive life while living with lupus,” Joy Buie, PhD, LFA’s director of research and the study’s first author, said in a foundation press release.
Lupus disproportionately affects African-American, Hispanic, and Native American populations, who also see relatively poorer health outcomes, including more severe disease and kidney involvement, as well as higher mortality.
“Negative social determinants of health are well documented as contributing to racial and ethnic disparities in lupus, a disease in which members of a racial or ethnic minority group are more adversely affected,” Buie said.
The role of poverty, housing, work in health disparities
With the study, the LFA sought to summarize the evidence on the role of social determinants of health in racial and ethnic disparities with the disease’s outcomes. The health disparities advisory panel, made up of 10 researchers and patients specialized in health disparities, reviewed studies from 2011 to this year on such disparities, information from the U.S. Centers for Disease Control and Prevention, and other sources.
It found that economic instability and a lower socioeconomic status or poverty are associated with worse lupus-associated disability and higher mortality. Because severe lupus affects a person’s ability to work patients are more likely to have “reduced work productivity, subsequently leading to transition into poverty or low [socioeconomic status].”
Residing in poor or unsafe neighborhoods was also associated with greater disease-associated damage, depression, poor retention in care, and stress-induced lupus flares, where symptoms suddenly worsen. A previous study found Black patients were more likely to live in disadvantaged neighborhoods than white patients.
“Racism, and not race, has been identified as a major driver of Black mortality in the U.S. and racism is arguably the most potent risk to the health of Black patients with lupus in the U.S.,” the researchers wrote.
Stress related to anticipating or witnessing racism, as well as childhood and adult stress-related disorders, also contributes to higher disease activity.
Link between less social support, disease activity
Previous research has shown that Black patients have less social support than white patients and that “less social support was a predictor of greater [lupus] disease activity over time,” the researchers wrote. “Measures of socioeconomic status, including economic instability, poverty, unemployment, and food insecurity, as well as features of the neighborhood and built environment, including lack of safe and affordable housing, crime, stress, racial segregation, and discrimination, are associated with race and ethnicity in the U.S. and are risk factors for poor outcomes in lupus.”
Access to education and the quality of it also factors in disparities. Minority patients may be less likely to go to college and “lower educational attainment and academic achievement intersect with decreased self-efficacy, inappropriate medication-taking behaviors, and missed medical appointments,” which can lead to worse outcomes.
The panel also found disparities in healthcare affordability, accessibility, and acceptability, varying by region, insurance status, and race and ethnicity.
For instance, lupus patients from minority groups are less likely to enroll in lupus clinical trials and be referred to specialists. Also, Black lupus patients and lupus patients with public insurance “have greater risk of hospitalization readmittance compared with White and/or privately insured people with lupus,” the researchers wrote.
The panel also emphasized that data on the role of social determinants of health in American Indian/Alaska Native lupus populations is scarce.
While interventions have been proposed to target social support, depression, and shared decision-making, more research, interventions, and evaluation are needed, the panel noted.
“This research provides an overview of the structural, social and individual determinants that impact lupus health outcomes and highlights interventions to diminish disparities and improve outcomes,” Buie said.
The LFA offers educational and support programs that address care and treatment inequities. Its AIM initiative, which employs a multidisciplinary approach, brings together experts in lupus research, social sciences, and public health to develop solutions for underserved communities.
“Disparities in lupus across racial and ethnic groups in the U.S. are driven by [social determinants of health], some of which are more easily remediable than others,” the researchers wrote. “A multidimensional and multidisciplinary approach involving various stakeholder groups is needed to address these complex challenges … and improve outcomes.”
The study was conducted in a partnership with Charles River Associates and supported by the Pharmaceutical Research and Manufacturers of America and AstraZeneca, which markets the approved lupus therapy Saphnelo (anifrolumab-fnia).