May is Lupus Awareness Month, and nearly 1.5 million Americans are living with some form of lupus (lupus erythematosus) – a chronic, genetic autoimmune disease. There are four types of lupus: systemic lupus, which is the most common form of lupus and causes inflammation in the organs; cutaneous lupus, which affects the skin; drug-induced lupus, which is a short-term type of lupus caused by certain medications; and neonatal lupus which occurs in infants of women who have lupus1.
Lupus can be a debilitating disease. With lupus, the body’s immune system mistakenly attacks healthy tissues and organs. These attacks produce symptoms such as inflammation in the body, rash, hair loss, skin discoloration, swelling, and pain.
Based on the Centers for Disease Control (CDC) data, the Lupus Foundation estimates that there are nearly 16,000 new cases of lupus per year1. Anyone can develop lupus. However, women between the ages of 15-44 make up 90% of lupus cases1.
African American women and women of color are the most likely to be diagnosed with some form of lupus1. For African American women, lupus is more common and starts developing at a younger age2. In addition, African American women are more likely to face premature death as a result of lupus complications. Researchers believe that genes, heredity, hormones and environmental factors contribute to the likelihood of an individual developing lupus 1.
Because African American women are the most likely to be negatively impacted by lupus, more African American women should consider participating in clinical trials. Clinical trials are research studies that involve studying an investigational drug or therapy and ensuring that it is safe and effective for the general public to use.
Although the data shows that African American women are diagnosed with lupus and experience premature death more than other racial groups1, it doesn’t explain why. More African American women need to be encouraged to participate in clinical trials in order for researchers and healthcare professionals to understand why African American women are more likely to develop lupus, and can then provide better care options for the future.
In a patient interview with the Lupus Foundation, lupus survivor and African American clinical trial participant Wendy Rodgers states, “…when we participate in a clinical trial, we empower ourselves.”
If you have been diagnosed with lupus, you might want to consider participating in a clinical trial.
You’ll also have access to a team of healthcare professionals to get your health-related questions answered. In addition, you will play an important role in the health of yourself and others who are living with lupus.
Without the inclusion of more African American women volunteer participants in clinical trials, what scientists understand about lupus and how it affects African American women is limited. In order for researchers to develop lupus medications that are safe and effective for African Americans, their participation is needed in clinical trials.
Clinical trials also help advance medical knowledge and are necessary for scientists to develop and test new treatment options and investigations drugs for the safety and efficacy of all involved.
When scientists are testing for efficacy and safety in an investigational medication, genetic risk factors matter. Genetic risk factors include an individual’s age, sex, race or ethnicity, and family history1. This means that race and other genetic factors may influence how a medication works3 in a person’s body and what side effects they may have.
Because African American women experience lupus the most, their presence is necessary in clinical trials to ensure that investigational drugs are safe and effective for them to use.
Clinical trials are completely voluntary. If you or a loved one have been diagnosed with lupus, visit BMSStudyConnect to find out if you’re eligible for a clinical trial.
1 https://www.lupus.org/resources/lupus-facts-and-statistics. Accessed May 7,2021.
2 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4198147/. Accessed May 7, 2021.
3 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594139/. Accessed May 7, 2021.