Advocacy Core

A Message from Van Van Auken
Chair, Prostate Cancer SPORE Advocacy Core

The UCSF Prostate Cancer SPORE Advocacy Core comprises prostate cancer survivors and family members who share a common interest in advancing and supporting research and other activities that will lead to improved awareness, diagnosis, and treatment of prostate cancer. This group was formed in September 1998 with the encouragement and support of Peter Carroll, MD, and has grown to more than 40 active members.

I became one of the founding members of the Advocacy Core in 1998, after being diagnosed with prostate cancer in 1996 at the age of 51. I was shocked to be facing this life-threatening disease at that age, especially because I was otherwise extremely healthy with no family history indicating that I might be affected. Fortunately, I was able to work through a successful treatment and recovery thanks to the extraordinary skilled care I received from the staff at the UCSF Prostate Cancer Center. As a result of my experience and in gratitude for the dedicated care I received, I became determined to give back to the Center and to the broader prostate cancer community in as many ways as I could. I believe without question that prostate cancer survivors can make a significant impact in promoting research and treatment that can directly improve the life and survival of men diagnosed with this terrible disease.

I currently serve as the chair of our Advocacy Core, and in that capacity plan and lead our three meetings each year. In these meetings we discuss the many activities that our members have engaged in to promote improved awareness, diagnosis, and treatment of the disease. The members of the group decide individually which focus areas interest them and then commit their efforts to those areas. Some of the activities include:

• Research Development. Providing input into research and clinical initiatives undertaken at UCSF.

• Enhanced Patient Services. Developing recommendations to streamline the care of prostate cancer patients at UCSF, including a peer-counseling program available through the Cancer Resource Center.

• Patient Accrual for Clinical Trials. Advocates relay relevant information about UCSF clinical trials to appropriate members of local support groups.

• Community Outreach. Public education programs to raise awareness, increase knowledge, and motivate men to adhere to recommended screening guidelines and to seek treatment as needed.

• Fundraising. Support ongoing SPORE research, recruitment and career development, and developmental research within the SPORE.

An important part of each advocates meeting is spent participating in educational sessions on UCSF laboratory research and clinical studies, which are conducted by key physicians and researchers at UCSF.

A UCSF SPORE Executive Advocate Committee meets six times per year and comprises three SPORE leaders and three members from the Advocacy Core. The UCSF leaders are Peter Carroll, MD, Chair, Department of Urology; Marc Shuman, MD, Director, Prostate Cancer Research Program; and Eric Small, MD, Director, Genitourinary Medical Oncology. The advocates are Andrew Grove, PhD, Arthur Kern, and me. The committee focuses on reviewing scientific progress; resource allocation; progress of various clinical trials; identifying key lead researchers and clinicians needed (both for recruitment and for retention); and identifying fundraising needs for research and formulating programs to advance fundraising.

Individual advocates also participate in national forums and activities, which promote research and improved diagnosis and treatment of prostate cancer. I am currently serving as a member of the Department of Defense Prostate Cancer Research Program Integration Panel, a group that decides how to award $85 million annually to investigators nationwide in prostate cancer research. Along with other UCSF advocates, I also participate in the annual national Prostate Cancer Inter-SPORE meeting and the national SPORE Investigators' Workshop, both sponsored by the NCI. At these events, advocates, researchers, and physicians from leading cancer centers meet to discuss progress and collaborate on how to improve programs from both an advocacy and a research standpoint. Other members of the UCSF Advocacy Core are active participants and board members of national organizations such as the Prostate Cancer Foundation (formerly CapCure) and the National Prostate Cancer Coalition.

The Advocacy Core has been successful at UCSF because of the dedicated participation of its members and the collaborative spirit exhibited by the UCSF researchers and clinicians, who have always been open to the input and involvement of advocates. We welcome your interest in learning more about our group and in possibly becoming involved with our activities, and we hope you will contact us through Malinda Walker, our administrator, at mwalker@urol.ucsf.edu or me directly at vvanauken@mayfield.com.