For years, Westley Sholes expressed concern that his father was receiving health care in a public clinic setting rather than under supervision of a single personal physician, yet Westley's recommendation fell on deaf ears. Westley's concern turned out to be well founded; only after multiple visits did one resident finally determine that Westley's father had advanced prostate cancer.
Because of factors including his African-American heritage and a family history of prostate cancer, Westley chose to be more aggressive in monitoring his own health. Even with a normal PSA reading, he had an ultrasound done as a baseline with the intent of using annual ultrasounds in addition to PSA and other measures. He recognized that this was unorthodox; however, he felt he had good reason for concern.
Subsequent exams showed that Westley did have prostate cancer, and he had about three months to think about what course of action to take regarding treatment. A background in health policy and services also helped form his decisions; Westley was a deputy director of health services for Los Angeles County Health Services at the time of his retirement, and always took a keen interest in health policy - especially for disenfranchised people or those who had limited opportunities for medical care.
Following his surgery, Westley thought about his professional background and experience, and wondered how he could make an impact in the prostate cancer community. He researched prostate cancer support organizations and found the National Prostate Cancer Coalition. As he learned more about the organization, Westley developed a connection with its president.
"Like me, Bob Samuels1, president of the Coalition at the time, is a black man, so I called him and we talked about our mutual experiences and aspirations," Westley said. "The more we talked, the more we both realized there was a great need for additional education about prostate cancer and especially in the black community because of disproportional representation. Bob gave me the assignment of joining a group of individuals who were attempting to establish a state-wide organization that became the California Prostate Cancer Coalition (CPCC), and that has been going strong for almost ten years."
Through the efforts of its Chairwoman and many dedicated advocates. the CPCC successfully lobbied against efforts to remove state funding to treat men who were diagnosed with prostate cancer but unable to pay for the treatment. The CPCC also was the catalyst for developing similar state-level organizations across the country.
Westley's individual advocacy engagement grew significantly when he was nominated to serve as a consumer reviewer for the Department of Defense (DoD) Prostate Cancer Research Program (PCRP) peer review. Several years later, Westley joined the PCRP Integration Panel (IP), the external advisory board that makes recommendations to the DoD on which research applications will be funded.
"For both peer review and the IP, I believe my input validated and confirmed the rationale to include advocates in the decision-making and management of the program," Westley said. "The PCRP is outstanding in expediting improved treatments and outcomes, and in creating mechanisms to identify new researchers and facilitating their development."
For several years, the PCRP has funded research grants through the Collaborative Undergraduate Historically Black Colleges and Universities (HBCU) Student Summer Training Program Award. Re-affirming his dedication and commitment to the underprivileged and overlooked, Westley said he hopes that in future years, his work on the PCRP IP could lead to expanded opportunities for students at those universities.
"There is a huge untapped talent pool of researchers at the smaller schools, but many don't have the sophistication and money to pay for grant writers and the other resources they need," Westley said. "The PCRP is good at developing mechanisms to identify new researchers and facilitate their development, and I will keep working on that effort for as long as I can."
1 After the writing of this story in early November, CDMRP sadly learned that Mr. Samuels, on November 18, 2012, had passed away.