Lupus is a chronic autoimmune disease which disproportionately impacts women of childbearing age, particularly women of color.1 It is two to three times more prevalent among African American, Hispanic/Latina, Asian American, Native American, Alaska Native, Native Hawaiian and other Pacific Islander women than among White women.2 In the U.S, about 90% of people living with lupus are women, and most people experience initial symptoms between ages 15 and 44.1 Despite its prevalence, treatment options for lupus have long been limited.
The epidemiology of those living with lupus underscores why representative participation in clinical trials is so vital: New therapies should include the patient populations that are affected by the disease to ensure the therapies are effective. Shanelle also recognizes it’s not just about clinical trial enrollment, but about the entire experience.
“One of the challenges in the clinical trial process is the lack of diversity in staffing and accessibility within the communities that need it most. For a lot of people, it means something to have somebody that culturally relates to them,” Shanelle explained. Today, she is a vocal advocate who works to raise awareness of lupus and its effects, particularly on women of color.