In the impoverished communities of the Mississippi Delta, where prostate cancer death rates are more than 28 men per 100,000, residents were leery about the concept of research. Delta residents were deeply concerned about exploitation and feared that participating in cancer research would make them guinea pigs.
So Freddie White-Johnson created a community cancer outreach movement, and she did it almost by herself. White-Johnson founded the Fannie Lou Hamer Cancer Foundation in 2005. The foundation uses private and public funding to support cancer awareness and prevention activities, most run by volunteers from the Mississippi Network for Cancer Control and Prevention (MNCCP), based at the University of Southern Mississippi. White-Johnson is now the MNCCP’s program director. Read more about MNCCP’s work at https://tinyurl.com/ydwkjrdc.
Mississippi already ranks fifth in the nation for prostate cancer deaths and fourth in breast cancer deaths. The nine counties of the Mississippi Delta have breast and prostate cancer deaths higher than Mississippi’s averages. Nationally, the death rate for prostate cancer is 19 per 100,000, compared with the Delta’s rate of 28 men per 100,000.
Although conditions have improved in the past 50 years, the Delta remains one of the most deprived regions in the U.S. The national poverty rate is about 11.7 percent; it’s 15.7 percent for Mississippi. In most Delta counties, it’s 30 to 40 percent.
While problems at the notorious “Sugar Ditch” in Tunica, Miss., improved after visits from national leaders in the mid-‘80s, the Delta remains one of the most deprived regions in the U.S.
The Delta communities have other social problems as well – high rates of teen pregnancy and incarceration. Many people lack sufficient food and clothing, and some residents have no indoor plumbing.
White-Johnson knew she had an uphill slog to teach people in the Delta about cancer prevention. But she also knew it was critical work. The new prostate cancer case rate in black or African-American men in Mississippi is almost twice as high as the new case rate in black or African-American men nationally.
With co-leader Carol Connell, Ph.D., RD, a professor at the University of Southern Mississippi, White-Johnson used an engagement award from the Patient-Centered Outcomes Research Institute (PCORI) to develop a training curriculum for community health advisors. The curriculum was designed to counter community fears. Read more about the project at https://tinyurl.com/279epw48.
Under White-Johnson’s and Connell’s leadership, MNCCP has trained more than a thousand community health advisors, selected from people who already make a difference in their communities. The advisors teach community members about breast and prostate cancer, including warning signs, symptoms, and the importance of screening.
The advisors meet their neighbors wherever they are – in churches and shopping areas, and in rec centers and fire stations. They provide food and activities to occupy children so parents can learn. The advisors also host health fairs, pass out literature and recruit people for screenings. Afterwards, advisors follow up with those who have not yet been screened.
Community advisors on White-Johnson’s team also take more direct action to assist those already living with cancer. They provide transportation to medical appointments and help patients determine questions to discuss with doctors. They also provide for some patients’ most basic needs, including food, heat, clothing, and training in proper hygiene.
Sammy Foster is one of those community advisors.
His team’s members interact with African-American men at health fairs, give talks at various venues, and follow up with attendees so they can get screened.
“The men don’t believe in going to the doctor even for a regular checkup,” Foster says. “The worst thing is that people aren’t knowledgeable about health and cancer. They are afraid to have a simple prostate exam because they don’t realize the importance of preventive health.”
White-Johnson understands the people she’s reaching out to. She grew up poor, the child of parents who never completed high school, on a cotton-and-soybean farm. When she was 17, her father was diagnosed with stage IV lung cancer. No one in her family had heard of cancer, and the family had no health insurance.
“He was treating … cancer with Epsom salts and warm water and gargling,” White-Johnson says. Her mother finally insisted that her father see the doctor when his pain became unbearable. She says that her father’s deathbed advice to her to “go to school and get an education, and then come back and help the people like us” inspired her. She earned a degree in public policy and administration at USM and approached the university about launching the Fannie Lou Hamer Cancer Foundation.
Initial interest was high, but no one wanted to lead the foundation, so White-Johnson took on the work herself. The university chose to independently continue the network, changing its name, when some of the early funding ended. White-Johnson continued the Fannie Lou Hamer Cancer Foundation, and it supports the USM’s network with supplemental funding.
It will be many years before White-Johnson can consider her work completed.
“There are so many people still out there in Mississippi who don’t have any direct support or health resources,” White-Johnson says. “There are men who don’t even know what a prostate is. There’s so much work that still needs to be done.”
Prostate Cancer Resources:
Prostate Cancer Awareness Month (September)
Treatment of Early Stage Prostate Cancer and Quality of Life, for Patients, from PCORI
Prostate Cancer brochure (free download)
Photo Credit: “Mississippi Delta Children by Dorothea Lange, 1936” via Creative Commons.
