Introduction
In 1998, the Breast Cancer Research Council and Staff grieved the loss of one of our Council members, who lost her long battle with metastatic breast cancer.
In 1998, one of our Council members joined us by telephone from her hospital bed, where she was being treated for an infection in her arm (a consequence of her surgery many years ago).
As we approached 1998, another Council member underwent the mastectomy that she was able to avoid three years previously because her cancer recurred.
In 1998, all of us sat in stunned silence when we heard that yet another member of the Council had been diagnosed with metastases just weeks after passing her seven-year check-up.
And while we fight our personal battles with breast cancer, and stand by friends and loved ones in their struggle, another 19,300 California women and men are estimated to have started down the long road of breast cancer in 1998, and 4,585 people are estimated to have been lost.
One cannot be faced over and over again with this reality and not feel an urgency, an impatience, an anger with what we still do not know and how helpless medical science still is in preventing these tragedies. And we believe that we need this sense of urgency, this impatience, this anger to push science further and faster to find the answers that will stop the epidemic in our lifetime.
The California Breast Cancer Research Program is a constructive expression of the anger and frustration of women with breast cancer. It arose and continues to grow through the energy, wisdom, and dreams of women that have resulted from their experience with breast cancer.
One of the principles upon which CBCRP was created is that activists' voices should be heard in all aspects of the Program.
We have heard over and over from scientists who have not worked with breast cancer activists before working with the California Breast Cancer Research Program that the experience they have had with the Program has changed the way they approach their own research and the way they think about science.
Breast cancer activists participate in all levels of Program activities and decision-making. Some of this inclusion was built into the Program with the enabling legislation (such as the composition of the Advisory Council). Through active collaboration between breast cancer advocates and the Program administrators, we have made this relationship and inclusion much broader.
At the broadest level are the people of California, who are the ultimate recipients of any benefits the Program produces. Efforts to reach these people with the results of research funded by the Program fall into two major activities—dissemination and discussion of research results, and translation of research results into services that reach women.
We are currently planning the 1999 California Breast Cancer Research Symposium, to be held in Los Angeles on September 17-18, 1999. We are building upon the success of the 1997 California Breast Cancer Research Symposium in Sacramento, at which over half of the 700+ participants were lay people who interacted with scientists presenting their research results. This is one way to ensure that the people of California have the opportunity to hear about the latest advances and discuss them with scientists.
To help ensure that the research funded by the Program benefits women in the State, the Program emphasizes translation—development of new treatments and services—in its awards. Research funded by the Program has led to clinical trials of new therapies; training manuals for outreach programs that utilize state-of-the-art methods; and development of new services for breast cancer patients. It also supports and encourages risk-taking, translating in a constructive way the impatience felt by many with the slow pace of research.
Active participation of activists in generating ideas and advising the Program on its strategies to make a difference in breast cancer is a founding principle of CBCRP. The current CBCRP Research Priority Issues were developed from recommendations made at the 1996 Public Advisory Meeting. At that meeting, CBCRP brought together activists, advocates, survivors, health care providers, health educators, biotechnology scientists and academic scientists, who worked together to develop and prioritize the issues they thought were most critical to breast cancer research.
At yet another level, activists have always brought their unique perspective to assessing the innovativeness, potential impact, significance, and feasibility of individual research proposals submitted to the Program. Breast cancer advocates review every proposal submitted for funding, and breast cancer advocates serve as full voting members of the peer review panels.
Another area in which we have advanced the inclusion of activists is in the actual performance of research. The Community Research Collaboration Award requires a partnership between community members (such as a breast cancer advocacy organization) and research scientists. The partnership works together to identify the research question, develop the research plan, carry out the research, interpret the results and disseminate information to the community. The result is mutual learning and research that is important to both scientists and communities.
The voices of breast cancer survivors are carried into all major Program decisions by involvement of advocates on the Advisory Council—the body that determines the Program's strategies and funding priorities. With a full one-third of the members being breast cancer activists, a diverse range of activist opinions are heard and brought to bear on all decisions.
Finally, the Advisory Council has chosen to ensure that breast cancer survivors are not only seated at the table, but share the leadership of the Council. In all of its five years, the Chair or Vice Chair of the Council has been a breast cancer advocate.
This model of activist inclusion and partnership gives me hope that CBCRP will find answers that will help women, and will find them more quickly. And this hope is bolstered by the tremendous portfolio of research progress and research findings described in this Annual Report.
