Innovative Penn program aims to combat stigma associated with prostate cancer

For men in the United States, prostate cancer is the second most common cancer after skin cancer, and the second leading cause of death from cancer. Rare in males younger than 40, risk factors include being older than 65 years of age, having a family history of the disease, and being African American.
Despite the commonality of prostate cancer—nearly 180,000 men are diagnosed annually—there is often a stigma associated with the disease. 
Neha Vapiwala, an associate professor of radiation oncology in the Perelman School of Medicine, says there are many barriers to addressing and preventing prostate cancer deaths that go beyond lack of insurance and access to health care.  
“Cultural myths and societal misperceptions about certain stigmatized diseases may prevent people from asking questions, understanding symptoms, or seeking care,” she says. “Deep-rooted distrust of the health care system further exacerbates the problem.” 
To overcome the stigma and get men to open up more about prostate cancer, Vapiwala and Karen Glanz, a Penn Integrates Knowledge professor with appointments in Penn Medicine and the School of Nursing, are working on a project to empower people by providing respected and trusted community and religious leaders with basic information about prostate cancer. Then, if approached, they can provide important facts and knowledge, serving as a bridge to make sure those who need assistance can get it.  
Vapiwala and Glanz envision a train-the-trainer type program. Phase one, in process, is four focus groups composed of African Americans and Latinos, two high-risk populations. Part two will include creating mini-curricula and working with community organizations to select the trainers. 
The project, funded in part by the Prostate Cancer Foundation, was inspired by a well-educated, health-conscious, African-American, 40-something patient of Vapiwala’s. Prior to his diagnosis, he didn’t realize someone his age could even get prostate cancer. He was unaware of his family history—important since two of his uncles had the disease—and only began talking about his symptoms after a janitor at his gym shared a similar personal story. 
That experience opened Vapiwala’s eyes and she reached out to Glanz, with whom she had worked on a prostate cancer conference that brought together clinicians, scientists, policymakers, public health experts, patients, and survivors. 
“The conference was a first venture of its kind for us,” Glanz says. “Out of that came some clear needs, and some of them really converged with what Neha had noticed in her clinic.” 
The researchers are currently setting up focus groups. From those groups, they hope to derive themes upon which they will build a survey to send to the larger Philadelphia community. Next spring or fall, they plan to apply for a National Institutes of Health grant to create and distribute the curricula, and begin to measure their effectiveness.  
If all goes as planned, Vapiwala and Glanz expect they will be able to employ similar techniques for other diseases. 
“We’re using prostate cancer as a model,” Vapiwala says. “You could insert cervical cancer, diabetes, or any number of health conditions associated with stigma, fear, and mistrust.”