Lupus Erythematosus (Lupus) is a genetic, incurable, long-term autoimmune disease that affects many parts of the body. When a person has lupus, their immune system attacks the healthy cells in their body. Common symptoms of lupus are extreme fatigue, swelling in the hands, feet, or joints, headaches, low fevers, sensitivity to light, hair loss and chest pain when taking deep breaths. However, because lupus is a heterogenous disease, the symptoms experienced are different for each person.
In addition to being a genetic disorder, lupus is also considered a hereditary disease. This means it runs in families, and if you or a member of your family has lupus, there’s a chance that you’re at risk too.
The Lupus Foundation estimates that nearly 1.5 million Americans are living with lupus. Although any race, sex or ethnic group can develop lupus, African American women and women of color in childbearing age are at the highest risk of developing lupus.
In fact, nearly 90% of people living with lupus are women, and for African American women, lupus is more common, and more deadly. A recent study conducted by the Lupus Foundation found that lupus is among the top 10 leading causes of death in Black women ages 15-44.
African American women are affected with lupus three times more than White women, and 1-in-250 African American women will develop a form of lupus in their lifetime.
Today, it is still unknown as to why African American women are more likely to develop lupus and face greater premature death outcomes as a result of lupus complications. However, it is believed that genetics and environmental factors may play a role. More research is needed to address these.
Because African American women are disproportionately affected by lupus, their presence is greatly needed in lupus-related clinical research studies. Clinical trial research studies are scientific studies that are used to determine if an investigational drug or therapy is safe and effective for the general public to use.
By participating in a clinical trial, you are contributing to the future of medicine for yourself and others who have been diagnosed with lupus. In addition, you may have access to the investigational medication before it is approved and made available to the public.
To better understand lupus and increase the safety and efficacy of treatment options in the future, African American women need to be present in clinical trials.
Without the representation of African American women in clinical trials, scientists can’t get the bigger picture of how investigational drugs will affect all of those involved – including African American women who are the most negatively impacted by lupus complications.
Representation matters. Studies have shown that different racial or ethnic groups may respond differently to the same medications. In an interview with the Lupus Foundation of America, Wendy Rodgers, an African American lupus survivor and clinical trial participant states, “It is so important for African American women to participate in clinical trials because the standard of care does not always fit us. We need to be present in these trials because when they design medications, we need to have drugs designed to fit our bodies, [to] respond to our bodies.”
There isn’t a cure for lupus, but currently available treatment options can help alleviate the symptoms and maintain or improve the standard of living for those living with lupus.
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.