Health disparities and the many faces of cancer

The remarkable thing about the 68 classically posed portraits of the University of Tennessee Health Science Center (UTHSC)'s "Live! Just as We Are" exhibit is how unremarkable they are. Other than all of the subjects being African-American and women, there is nothing obvious connecting them. Which is the most unsettling thing about these portraits of breast cancer survivors: it isn't obvious. 

On closer inspection, there is something about the calm, confident eyes of people who have beaten a potentially fatal threat.

The exhibit, currently showing at the Benjamin L. Hooks Library Central Library until the end of the month, was unveiled on Feb. 6 for 530 guests before a summit on breast cancer and African-American women convened by the UTHSC's Research Center on Health Disparities, Equity and Exposome (RCHDEE). The driving force behind the event was Patricia Matthews-Juarez, PhD, Professor in the Department of Preventive Medicine and Co-director of the Center for Health Disparities, Equity and the Exposome at the University of Tennessee Health Science Center. She wanted the portraits, taken by Thurman Hobson, "to put a face on African-American women with breast cancer."
Stephanie Turner, two year cancer survivor, poses before her exhibit portrait

Officially called "LIVE! African-American Women Surviving Breast Cancer through Education, Early Detection, Screening and Treatment," the free event was about more than photographs. Keynote speaker Dr. Thelma Hurd--a surgical oncologist and director of the Breast Surgery Program at the University Health Science Center in San Antonio--told attendees, “Not only is African-American breast cancer mortality two-and-a-half times higher in Shelby County and the surrounding four counties, but Memphis also has the unique distinction of having the highest African-American breast cancer mortality rates in the United States for the last 20 years running. This is a major, major problem."

Hurd says that the first step in closing the disparity in mortality rates is for African-American women to "stop thinking that breast cancer is a death sentence."

Matthews-Juarez, whose passion and enthusiasm for the exhibit's mission is infectious, agrees that fear is one factor in a complex issue.  

"There is definitely a taboo. Patients don't want to talk about breast cancer because they say it's like admitting you have ebola," she explained.
 
This reluctance makes early detection very difficult. According to a study published in the Journal of American Medical Association (JAMA), because of late diagnosis, 20 percent of African-American women with breast cancer do not learn of their disease until the third or fourth stage, as opposed to only 11 percent of white women being diagnosed in later stages. The impact of late diagnosis is startling: nearly 70 percent of white women live at least five years after diagnosis. For African-American women, the survival rate is just 56 percent.
 
"If you've got a first-degree relative who has had breast cancer, then this is a discussion that you need to be having," said Matthews-Juarez. For women without a family history of cancer, early screening is still a must--only 10-30 percent of cancers are genetic. She suggests following the American Cancer Society's guidelines: seek screening every three years for women in their 20s and 30s, and annually for women over 40. Self-policing is crucial. "African-American women must be responsible for African-American women," she added.

In addition to early screening, Matthews-Juarez says women must have access to a primary care physician who can speak knowledgeably about a diagnosis, as well as refer a specialist. 

According to Hurd, a recent study found that only about 5 percent of African-American women know the four things she feels all women should ask physicians about a tumor: what the stage is, whether it is estrogen or progesterone receptor negative or positive, whether it is HER2 positive or negative, and what the grade is. "This is your currency for talking to anyone in the healthcare system ... If you don't know this, then you can't really have a meaningful discussion."

A third major factor in the disparity is socioeconomic, specifically access to adequate healthcare and insurance. 
Dr. Patricia Matthews-Juarez and her husband, Dr. Paul Juarez
Matthews-Juarez and her husband, Dr. Paul Juarez, were recruited in 2013 to start the research center to address the glaring disparity. While working with the various breast cancer organizations within the African-American community, she decided that a coalition hosting a single event could increase the impact of a shared message. 

And the importance of the issue is certainly demonstrated by the many partners who helped launch the art show. Collaborating with the UTHSC RCHDEE on the event were Common Table Health Alliance; Shelby County, The Links, Incorporated; Tennessee Department of Health, Office of Minority Health and Disparities Elimination; Carin' and Sharin' Breast Cancer Education and Support Group; Sisters Network Memphis Chapter; Surviving, Thriving, African-Americans Rallying Support Group (STAARS); Seeds2 Life, Inc.; Community Action Team of Shelby County (CATS); Community Health Advisory Specialty (CHAS), American Cancer Society; The Church Health Center; Tennessee Cancer Coalition (TC2); Tennessee Men's Health Network; and the Faith Health Division of Methodist Healthcare.

At the end of this month, the exhibit will move to Methodist Healthcare's Center of Excellence in Faith & Health. In April, it will travel to the University of North Carolina at Pembroke, returning to the Memphis area in October for Cancer Awareness Month, with new pictures of survivors to spread the message. 

"These women in the exhibit, these are the women who have fought through the taboo," said Matthews-Juarez.