February 20, 2020

Black History Month is particularly important to the Lupus Research Alliance because this group is hardest hit by lupus. There’s no better time than the month aimed at celebrating this group to look forward and take action on their own behalf.

African Americans are three times more likely to have the disease, get it at a younger age and are at greater risk for severe symptoms and long-term complications than Caucasians.  They also respond differently to medications. To make matters worse, African Americans are not well-represented in clinical trials testing potential treatments.  So doctors have little basis to judge which drug will work best for their African American patients.

The Lupus Research Alliance teamed up with the digital health company Antidote Technologies, Scorr Marketing and seven other advocacy organizations to learn how people with varying diseases including lupus, and African Americans specifically, really feel about clinical trials.

Results from the survey of 4,000 people showed while nearly 40% of the US population are racial and ethnic minorities, only 2% to 16% participate.  Many studies have shown that African Americans tend to distrust the trial process.  Yet other research has shown that African Americans might consider if their doctor suggests one. In the Antidote survey, more than half of African Americans said they had never been asked by their doctor.

The Lupus Research Alliance urges taking control and asking your doctor if a clinical trial might be right for you. Some of the benefits include access to new treatments before they are widely available, support of a team of healthcare providers, satisfaction of helping improve lupus treatment for yourself and others.

Here is a brochure with more information about African Americans and lupus trials.