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Raising the profile of lupus

September 11, 2019
collage of three black and white photos of black women with the words Spreading the Word about Lupus
Lupus typically strikes women between the ages of 15 and 45 and is more common in black, Asian and Native American women. But researcher Edith Williams has found that young black women often don't know about the disease.

A new grant will allow MUSC doctors and researchers to test several ideas for improving care and outreach to people with lupus or at risk of developing the autoimmune disease. 

“I know our whole group is very excited,” said rheumatologist Gary Gilkeson, M.D., who serves as director of the MUSC Improving Minority Health in Rheumatic Diseases (IMHRD) Core Center for Clinical Research (CCCR). “When it came through we were thrilled.”

The two-year, $550,501 grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases includes three areas of concentration:

  • The beginnings of an educational outreach effort on college campuses. 
  • Piloting the use of a patient navigator for lupus patients at MUSC Health. 
  • A partnership with the University of Alabama at Birmingham to increase understanding of minority health and health disparities among health care providers at both universities.

Lupus typically strikes women between the ages of 15 and 45 and is more common in black, Asian and Native American women. The body’s immune system turns on itself and begins attacking healthy cells, causing joint pain, fever, rashes, fatigue, swelling and sun sensitivity. Managing the disease is critical, because unchecked it can lead to serious complications like kidney failure.

But awareness of the disease, especially in the communities it most affects, lags.  

photo of Edith Williams  
Dr. Edith Williams

“Some of the things I’ve heard from some of these young people is that this is an old white person’s disease or that it is a disease invented by scientists and hospitals to use them as guinea pigs,” said Edith Williams, Ph.D., who is heading up the educational outreach component.

She’s focusing her efforts on historically black colleges and universities (HBCUs) to try to reach the population at highest risk. Not only are black women more at risk for developing lupus, but they’re also more likely to be sicker, to be admitted to the hospital more often and to die from complications at higher rates, Williams said.

With this grant, she’ll work with focus groups at Claflin University, Voorhees College and South Carolina State University – as well as nonstudents ages 18 to 25 – to understand what young people already know about lupus and myths that are circulating about the disease. She will also determine the most effective way to reach out to them, whether that is flyers on a campus bulletin board, text blasts, postcards in the mail, digital messaging or messages from institutional leadership.

Williams understands why so many black people are skeptical of doctors and researchers, a distrust that stems from horrific research like the Tuskegee experiment.

“There is this very pervasive idea that the medical community is trying to use you, trying to use your body,” she said.

She hopes that her involvement, as an African American investigator, and the involvement of leaders at the HBCUs will encourage students to participate.

photo of Gary Gilkeson 
Dr. Gary Gilkeson

“Having a familiar, relatable face goes a long way, especially at this age,” she said.

Long term, she intends to use the insights gathered through the focus groups to develop educational outreach initiatives that could be used at all HBCUs in South Carolina and throughout the Southeast.

She hopes that as students learn about lupus and that such connective tissue diseases tend to run in families, they will share what they learn with their own families and friends.

Once diagnosed, managing lupus is a logistical challenge for many of the patients who Gilkeson and his colleagues see. About 2,000 people from across the state come to MUSC Health for lupus care, said Gilkeson. Many are from rural areas and have transportation problems. They might not be comfortable trying to navigate a big academic medical center. On top of that, their home communities might not have enough primary care doctors or might have lost the local hospital. 

To help these patients, the grant allows for the hiring of a patient navigator to see if having such a person would reduce disease flares and hospital readmission rates.

This is something the lupus doctors have wanted to do for a long time but haven’t had the money for, Gilkeson said.

The patient navigator would become the point of contact for at-risk patients. The navigator would help those patients with transportation issues, make sure they’re getting their labs done and taking their medications and help them decide if their health concerns warrant a trip to the local emergency room or if they should see an MUSC rheumatologist.

photo of Eric Zollars 
Dr. Eric Zollars

Gilkeson said his group suspects the lack of primary care is helping to drive readmission rates. Some patients are in the hospital six or seven times a year. With a patient navigator to guide them, he hopes they can stave off Emergency Department visits for colds or sore throats and also catch and treat issues earlier so people don’t end up in the hospital.

“A lot of the readmissions could be prevented with intervention like this,” he said. “We’re really excited to see what the patient navigator can do.”

Eric Zollars, M.D., Ph.D., will head up the patient navigator portion of the grant.

Finally, MUSC and UAB will work together to increase knowledge among providers from all clinical areas, not just rheumatology, about health disparities. Williams will travel to UAB and Jasvinder Singh, M.D., a professor at UAB, will visit MUSC. Both universities will host outside experts in minority health and health disparities in forums that will be available live or via webcast on both campuses.

About the Author

Leslie Cantu

Keywords: Research, Education