Like most men who learn they have prostate cancer, Virgil Simons was concerned and fearful when his doctor gave him the news in 1995. Still, Virgil was a senior corporate executive, he had a solid health insurance plan, and access to top doctors. His treatment plan, therefore, was developed, clearly explained to Virgil and his family, and he is now a 17-year cancer survivor.
Except that is not exactly the case. Oh, he is a survivor - but that treatment plan?
"I learned very early that I was not getting the best possible patient-focused care," Virgil said. "The perspective of the doctors I met with was that I was a specific tumor type and that they knew how best to deal with it. There was a lack of concern for me as a person and the kind of life I desired after treatment."
His experiences led Virgil to create The Prostate Net, a non-profit organization that works to maximize communications between health care providers, men with prostate cancer, and their families. Those capabilities were lacking at the time he was diagnosed, and Virgil said he does not want other men to suffer from a lack of understanding.
"When I was diagnosed, my initial reaction was fear and the belief that I could die," Virgil said. "After that came a period of anger and self-pity, and finally a resolve to fight it and re-claim my life by finding as much out about it as possible and then crafting a strategy to give me the best chance for cure and a good quality of life."
Along with that resolve came an awakening, a concern, and a plan of action. To prevent other men from dealing with the same questions, issues, angst and worries about a prostate cancer diagnosis, Virgil decided to do all he could to help those men and their families. With that, The Prostate Net became a reality.
"There was a need to inform and assist men in making necessary choices," Virgil said. "We need to increase the awareness of risk from the disease, providing a framework of understanding the choices that can and/or should be made relative to detection, treatment and/or maintenance."
With the development of The Prostate Net, Virgil had taken major steps toward advocacy, and there was no turning back. He realized the value and importance of sharing knowledge, ideas, and information - not only between doctor and patient, but also between all people affected by prostate cancer.
A natural next step was working with scientists to learn about and discuss prostate cancer research. Through his work developing and leading The Prostate Net, Virgil was nominated to serve on the Integration Panel (IP) of the Department of Defense Prostate Cancer Research Program (PCRP). IP members recommend an investment strategy for the PCRP and review applications for funding with an eye toward how the proposed research will help the PCRP achieve its vision of conquering prostate cancer.
Working among internationally renowned prostate cancer clinicians and scientists was and is an exciting experience, Virgil noted, which has helped him direct his efforts even more toward advocacy.
"Advocacy has taught me that we don't know what we don't know," Virgil said. "Before we can effectively advocate for change, we need to understand the situation in which we live. I have been able to compare healthcare standards from around the world and can see the insufficiencies within our system that limit the ability of our people to receive the best possible care."
As one of the longest serving members of the PCRP IP, and the only consumer ever selected to chair the panel, Virgil said he is grateful for all he has learned, and has developed a new sense of appreciation for the myriad of issues and struggles prostate cancer creates. More critically, he has seen the importance of patient and professional interaction that is necessary for effective research initiatives.
"The knowledge gained during my period of service has been most fruitful in shaping many of the initiatives of both the PCRP and The Prostate Net to better serve our constituencies," Virgil said, "as well as bringing the patient's perspectives to the forefront of research strategy and implementation. We need to increase the awareness of risk from the disease, provide a framework for informed decision making, and aid the continuing struggle to position men's health in the appropriate priority of government funding and personal responsibility."