Despite being a rare disease, lupus is a leading cause of death for women under the age of 35 with Black women experiencing more severe symptoms and higher mortality rates compared to other groups. This chronic autoimmune disease causes the immune system to attack the body’s tissues, leading to inflammation, pain, and potential organ damage. Clinical trials are a crucial component in developing new and effective lupus treatments, yet despite the prevalence of lupus within the Black community, Black patients remain underrepresented in clinical trials.
A recent study in Lupus Science & Medicine shared that Black patients are less familiar with clinical trials and their purpose than non-white patients. This study came from a surveyed cohort of nearly 800 predominantly Black patients with lupus to determine their overall knowledge of clinical trials, their past experiences, and their potential willingness to participate in future clinical trials. The survey was intended to help researchers better understand the barriers to clinical trial participation and ultimately treatment effectiveness in the Black community.
The cohort, known as GOAL (Georgians Organized Against Lupus), is comprised of Atlanta-based patients diagnosed with systemic lupus erythematosus (SLE). The cohort tracks the health and experiences of lupus patients over time.
While only 28 percent of survey participants were willing to join a lupus clinical trial, willingness to participate increased among Black respondents when asked about trials that specifically targeted their race or gender.
The study also found that Black men were significantly more open to participating in trials compared to Black women, suggesting that targeted outreach efforts focused on Black men and their involvement in race and gender-specific trials could be beneficial.]
“Increasing diversity in lupus clinical trials ensures that therapies effectively address the disease’s heterogeneous presentation across all populations,” Joy Buie, Vice President of Lupus Foundation of America, explained to BlackDoctor.org.
Buie suggests that to achieve diversity in lupus clinical trials, “we must collaborate with the patient community to develop and implement innovative, thoughtful strategies that both demystify the clinical trial process and mitigate the adverse social determinants and subpar patient-provider relationships that limit participation among people living with lupus.”
The study hypothesized that SDH-related barriers (social determinants of health) “play a significant role in the under-representation of Black people in lupus clinical trials as suggested by prior studies.” A historical mistrust of the medical system and an overall lack of awareness of clinical trials, has been detrimental to clinical trial participation among Black community members.
The research study further indicated that since 34 percent of Black respondents understood the definition of a clinical trial, this population “may benefit from targeted educational campaigns regarding clinical trials.” The study also found that “increasing diversity of clinical trial staff and race-specific and gender-specific trials may be beneficial for recruitment of Black participants into clinical research trials.”
While this study confirms that significant gaps exist, it also points to promising solutions. For example, the study was performed in a large metropolitan region of the southeastern United States, so the findings may not apply to Black populations in rural areas or areas not as engaged in medical research. By increasing education, fostering trust, and making clinical trials more accessible, healthcare providers can ensure Black lupus patients receive proper representation and quality treatment with positive outcomes.
For more information on clinical trials, discover our Clinical Trials Resource Center.
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