Advocates: Helping to Forge a Path to 2015
We use the term "cancer community" because, perhaps unlike any other disease area, there is a vast collection of groups and individuals who play an essential role in the cancer research enterprise. In my time as director of the National Cancer Institute (NCI), I've come to more fully appreciate the complexity, robustness, and diversity of this collective, especially with regard to the advocacy community and its remarkable success in advancing cancer research.
Just last week, for example, I participated in an event celebrating the 10th anniversary of the National Breast Cancer Coalition's Project LEAD. This program has helped to educate breast cancer advocates about the science of breast cancer, allowing them to work more closely with the research community in promoting new approaches to prevention, diagnosis, and treatment.
NCI recognizes the extensive reach and influence of the advocacy community - as advisors, educators, fund raisers, and legislative activists. NCI's Office of Liaison Activities (OLA) coordinates several programs that provide cancer research advocates with meaningful opportunities to offer guidance and feedback on NCI's priorities and initiatives.
Through the Consumer Advocates in Research and Related Activities (CARRA) program, for example, individual advocates can participate in the routine but important work that underlies much of what we do at NCI. Because of their expertise in patient issues, for instance, individual CARRA members are often asked to participate in the peer-review process, providing a consumer's perspective on research proposals.
The Director's Consumer Liaison Group (DCLG) gives the advocacy community a direct conduit to the NCI Director's office. DCLG, NCI's only all-consumer advisory group, played an important role in the launch earlier this year of a pilot initiative, the NCI "Listens and Learns" Web site. In its short existence, this Web site - http://ncilistens.cancer.gov/ - has provided an important venue for cancer advocates to voice their opinions on some of the most pressing issues facing NCI.
OLA also coordinates teleconferences with advocacy groups to help them better understand and educate their constituencies about important new issues. Several months ago, for example, OLA coordinated a trans-HHS teleconference to clarify changes in Medicare reimbursement policies for cancer care. We plan to conduct a formal series of such educational teleconferences.
NCI also is engaged in a diverse array of initiatives with individual advocacy groups. Last year, the institute joined with the Pancreatic Cancer Action Network to launch an initiative that will create a map pinpointing researchers and clinical trials focused on pancreatic cancer. The goal is to facilitate the development of national strategies to maximize and leverage resources in the fight against pancreatic cancer.
The Lance Armstrong Foundation announced last week that it has sold more than 47.5 million of its yellow "Live Strong" bracelets. This demonstrates what can be accomplished by committed advocates with a good idea. The cancer advocacy community is rife with people who have been affected by cancer in one way or another and decided to take action to help others. I welcome their participation in the effort to achieve the 2015 goal, and I continue to be awed by the willingness and motivation that cancer advocates display every day.
Dr. Andrew C. von Eschenbach