Us in Lupus is a 12-week online community and education program for new lupus patients. The upcoming events are extending support to a population that is two to three times more likely than whites to have the disease, which affects 1.5 million U.S. residents, 90 percent of them women.
The Lupus Foundation of America defines women of color as African-Americans, Hispanics/Latinos, Asians, Native Americans, Alaska natives, native Hawaiians and other Pacific Islanders. In particular, lupus affects 1 in 537 black women.
GSK will host “Night of Beauty” events on Oct. 29 at Sephora stores in Dallas, and on Nov. 14 in Los Angeles. Participants will learn more about the disease, connect with fellow patients, and get self-care tips from health and beauty experts. Local patient advocates will also be on hand.
“One of our goals as a leading healthcare company is to reduce healthcare disparities,” Carla Pearson, GSK vice president, U.S. special marketing, said in a press release. “The Night of Beauty concept was born out of a desire to provide women of color with education and tools to advocate for themselves with their healthcare team, and to help them feel more confident in doing so.”
Research at GSK has shown that lupus patients in general have sought more information on nutrition, hair loss, skin and scalp problems, and overall mental health and well-being. However, participants who identified as persons of color indicated a preference for more personalized resources.
A 2015 GSK survey in the United States and elsewhere found that lupus patients overall have difficulty describing symptoms to physicians, leading to a chasm in healthcare professionals’ understanding of the disease’s full impact. The company believes that women of color can especially benefit by having the Us in Lupus program brought to their communities.
“What made me finally go the doctor was I lost some of my hair,” Shanelle Gabriel, an African-American who was diagnosed at age 20, said in a GSK video. “I realized what my life with lupus was going to be like when I was first hospitalized. … I remember thinking to myself, so is this what my life is going to be like? Am I going to be in the hospital all the time now? And it was really, really, really challenging, and really scary.”
GSK recently presented Night of Beauty events in Atlanta, Washington, D.C., Philadelphia, and Chicago. The events are part of a larger effort that includes self-care, mindfulness, nutrition, and fitness & exercise, and are aimed at empowering patients to have more candid discussions with their healthcare providers. Next year, the campaign will focus on increasing mindfulness.
The landmark LUMINA (Lupus in Minority Populations: Nature vs. Nurture) study found that, compared with white patients with lupus, African-Americans with the disease are more likely to have organ system involvement, more active disease, and less social support. In addition, a 2014 study showed that African-American patients tend to develop lupus at a younger age and experience more serious complications than white patients.
“Lupus is a chronic autoimmune disease that can affect any organ of the body, including the skin,” said rheumatologist Donald Thomas, founder of the the Lupus Encyclopedia Facebook page. “We need to find more ways to raise awareness of this relatively unknown disease in the U.S. for which there is no cure and disproportionately affects women of color.”