Mistrust and bias are significant barriers to equal representation in lupus research, impacting Black, Hispanic, and Asian patients the most, despite these groups being disproportionately affected by the disease. Allen P. Anandarajah, MBBS, MS, from the University of Rochester Medical Center, emphasized the longstanding issue of underrepresentation in clinical trials, which is not reflective of the disease’s demographic impact. A 2018 systematic review revealed that Black individuals, who constitute 43% of systemic lupus erythematosus (SLE) cases, only accounted for 14% of clinical trial participants. This disparity extends to healthcare affordability, accessibility, and acceptability, with insurance status and region playing significant roles in exacerbating these issues across various racial and minority groups.
The underrepresentation and disparities are partly attributed to social determinants of health, some of which are more easily addressed than others. The importance of including diverse populations in research is underscored by the need to ensure all individuals have access to new treatments and care strategies. Despite race being a social construct, ancestral variations that may influence disease prevalence and outcomes are often overlooked in research, leading to real-world disparities in healthcare.
Efforts to bridge this divide include the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) considering the requirement of diverse participation in studies for trial consideration. This move aims to ensure that research findings are applicable and beneficial to all affected populations, thereby addressing the significant health disparities in lupus care and treatment.
See “Bridging the ‘vast divide’: Mistrust, bias fuel racial disparities in lupus research” by Rob Volansky on the Healio website (January 22, 2024)
