A new Lupus Education Awareness Program (LEAP) has been designed to improve diagnoses and treatment of Blacks, according to researchers. For Black women, whose rates of diagnosis chart three to four times more often than others, LEAP has the potential to drastically improve the quality of life for both lupus sufferers and their families. The program, spearheaded by the Office of Minority Health, is funded by a grant from the Department of Health and Human Services (DHHS) that is administrated by the National Association of State Offices of Minority Health (NASOMH).
Characterized by its ability to mimic other conditions, lupus is a chronic disease that can impact any system within the body and triggers excessive immune system activation, causing inflammation and both tissue and organ damage. Because lupus symptoms imitate many other disorders, it is a diagnostic dilemma for physicians and healthcare providers.
Currently, 73 percent of Americans between the ages of 18 and 34 have either not heard about lupus or know little about the disease beyond the name; yet as many as 1 in 537 Black women suffer from the condition. “To improve the outcomes of African-American women living with lupus and their families, the Lupus Education Awareness Program (LEAP) employs strategies to educate and increase health professionals’ ability to diagnose and treat lupus,” Dr. Steven Owens, project director, Lupus Education Awareness Program, told the AFRO. “Training African-American physicians and nurses in recognizing the signs and symptoms of lupus could contribute to improved health outcomes for women of color with lupus.”
According to Owens, one of the ways LEAP seeks to increase awareness, knowledge, and recognition of lupus signs and symptoms within Black communities is to use lupus symptom trackers forms to assist with early diagnosis and management of lupus. That early diagnosis becomes pivotal in improving healthcare for lupus sufferers, as many report going through up to six years of symptom evaluations to gain a proper diagnosis.
“Lupus can be difficult to diagnose because many of the signs and symptoms are similar to other diseases, can be interpreted as connective-tissue diseases, like rheumatoid arthritis, lymphoproliferative disorders, and chronic infections like HIV, hepatitis and Lyme disease, Owens said. “Many lupus patients report being misdiagnosed and treated for diseases/conditions for years prior to a confirmatory diagnosis of lupus. This is often because primary care providers may not connect the reported signs and symptoms to lupus and, in addition, may not be as aware of the additional sub-laboratory tests they can order to diagnose lupus.”
Ward 7 resident Tonya Spanner, who has spent the last 16 years living with lupus, believes that while the LEAP platform came too late to help with her diagnosis, it could prove critical in diagnosis and treatment for Black women in the District. “So often we talk about Black women having it all, but when it comes to health diagnoses and outcomes, we are often screened late, making the severity of conditions greater,” Spanner told the AFRO. “As we continue to advance in areas of family, education and careers, we have to make our own healthcare a priority – especially with a condition as volatile as lupus.”
LEAP’s establishment comes amid growing concerns about the detection and treatment of lupus among researchers, including the Lupus Foundation of America, which announced Nov. 16 a $3.8 million funding provision over the next five years to support the first-of-its-kind clinical trials.
“Research and funding is only one half of the story, because without a clear diagnosis, Black women would still be unable to take advantage of trials and treatment protocols,” Spanner said. “LEAP gets us on an even playing field.”
The current research cycle and award will work to determine if mesenchymal stem cell (MSC) therapy diminishes the debilitating long-term side effects of lupus, reduces the need for medications like steroids, and stops damage to vital organs. The therapy uses multipotent cells for treating a variety of immune-mediated diseases, according to the National Institutes of Health.
“Through empowering women of color and educating providers, we hope to decrease the timeframe for a lupus diagnosis and get people into treatment sooner to prevent tissue and organ damage, and even early death from lupus,” Owens told the AFRO.