22 Jan Bridging the ‘vast divide’: Mistrust, bias fuel racial disparities in lupus research

By Rob Volansky, Healio

The body of data demonstrating that lupus significantly and disproportionately impacts Black, Hispanic and Asian patients is robust. It should therefore follow that these populations are appropriately represented in clinical trials for the disease.

Unfortunately, the data showing just the opposite are similarly robust.

“This is a problem that has existed for quite some time,” Allen P. Anandarajah, MBBS, MS, of the University of Rochester Medical Center, told Healio Rheumatology.

The data support Anandarajah’s point. A 2018 systematic review published in Arthritis Care & Research by Falasinnu and colleagues presented data for 193 randomized controlled trials from 1997 to 2017. The results suggested that although Black individuals make up 43% of prevalent systemic lupus erythematosus cases, they represented only 14% of clinical trial enrollees. Meanwhile, Hispanic patients comprise 16% of prevalent SLE cases and 21% of randomized clinical trial enrollees, Asian patients comprise 13% of prevalent SLE cases but just 10% of trail enrollees, and white patients constitute 33% of prevalent cases but represent as much as 51% of trial participants.

“There is a vast divide between who is living with the disease in terms of absolute numbers and who is actually participating in clinical trials,” Joy Buie, PhD, MSCR, RN, of the Lupus Foundation of America, said in an interview.

Mistrust of the health care system among historically underrepresented populations is one explanation for this phenomenon.

“Studies have shown that patients of Black race and Hispanic ethnicity are often too wary about clinical trials,” Shivani Garg, MD, MS, an assistant professor at the University of Wisconsin School of Medicine and Public Health, told Healio Rheumatology. Read more …