Lupus is a chronic condition that is characterized by the body’s immune system attacking itself.1,2 This results in inflammation throughout the body resulting in flares and potentially organ damage.1,2 Lupus affects all types of people with different health and ethnic backgrounds, but women 15-44 years of age have the greatest risk.1 An overwhelming 90% of people with lupus are women.3
Additionally, lupus disproportionately impacts minorities in the United States.4 African Americans are three times more likely to have lupus and nine times more likely to experience kidney failure as a result of lupus when compared to their white counterparts.4,5 Not only is lupus more common, but it is also more severe in African Americans.5 Black patients are also more likely to develop lupus at a younger age and have worse outcomes long term.5,6
In addition to the health implications, there is also an impact on social andeconomic factors.4 An example of this is that African Americans with lupus are twice as likely to lose their job after being diagnosed which may lead to unemployment or underemployment. Black patients must also deal with increased mistrust of the healthcare system which can lead to a delay in treatment and lack of involvement in the decision-making process.
Clinical Trial Participation
Why is lupus more common among Black women? The answer is unclear. Researchers believe there could be a genetic link.5 There are also hormonal and environmental factors that contribute.5 Participating in a clinical trial is a way you can contribute to helping scientists better understand the condition and develop drugs that could help. Unfortunately, Black patients are underrepresented in clinical trials, and low minority participation does not accurately represent the United States population.6 Black patients make up 43% of lupus cases but only 14% of clinical trial participants.6
There are several factors that may contribute to low minority participation in clinical trials. Research shows that common patient-related barriers to clinical trial participation include:
- Lack of access
- To specialists with knowledge of lupus clinical trials
- To resources needed for trial participation such as transportation, child care, health insurance, and time off from work
- Many patients are unaware that clinical trials offer care at no cost
- Lack of opportunity
- To learn about clinical trials
- To connect with minority providers who may refer patients to clinical trials
- Lack of trust
- Among African American communities due to a history of racial bias within the medical system
- Towards being the subject of an “experiment”
Researchers may struggle to learn more about how or why lupus disproportionately impacts the Black community or develop more effective therapies without more diverse clinical trial participation. While barriers will always exist, acknowledging
them can help you overcome them.
Make a Difference
Minority participation in clinical trials is vital to ensuring Black patients are
adequately represented and working towards eliminating the disparities that
The TOPAZ studies are evaluating an investigational lupus drug. If you or someone you know has been living with lupus for at least 6 months and are currently taking lupus medication, click here to learn more about eligibility. If you are eligible and participate in the study, you will be regularly monitored and receive the investigational drug at no charge.
- CDC. Systemic Lupus Erythematosus
- CDC. Lupus Awareness
- Lupus Foundation of America. Lupus facts and statistics
- Lupus Foundation of America. Health disparities in lupus
- Lupus Foundation of America. Quick Guide: African Americans and Lupus
- Sheikh SZ, Wanty NI, Stephens J, Holtz KD, McCalla S. The State of Lupus Clinical Trials: Minority Participation Needed. J Clin Med. 2019;8(8):1245.
Published 2019 Aug 17. doi:10.3390/jcm8081245