BCA’s Response to the National Cancer Institute Email
Dr Andrew C. von Eschenbach
National Cancer Institute
avonesch@mail.nih.gov
January 5, 2004
Dear National Cancer Institute,
As a breast cancer activist and the leader of a large and growing advocacy organization, I appreciate your response to the email I sent to Dr. Andrew C. von Eschenbach; however, it raises some additional questions.
I have looked at your web site and the two documents you mentioned: the 1998 report “Charting the Course: Priorities for Breast Cancer Research” and the 2004 report “The NCI Breast Cancer Progress Report.”
The 1998 report points to an effort by the NCI to review the state of current research at that time and plan its future research priorities and goals, but it does not address the need for true coordination of cancer research. In addition, more “outcome-driven” research is needed to answer central questions that remain unanswered in breast cancer. Is there more that the NCI is doing to promote the coordination of breast cancer research? In light of the fact that more than 60% of clinical studies are currently funded by private industry and not by the federal government, this is an increasingly important issue.
The 1998 report also states that one of the priorities of the Breast Cancer Progress Review Group (BC-PRG) was to plan, convene and analyze input from the Breast Cancer Research Roundtable. The report mentions the 1997 Roundtable brought together 250 leading members of the breast cancer research and advocacy communities to discuss key scientific questions for future breast cancer research and to inform the deliberations of the BC-PRG. I was not able to find information on this Roundtable on your web site. Do you have information available about which advocacy and research groups were present, and what recommendations came out of this meeting?
In addition, the report states the “members of the BC-PRG were selected from among prominent members of the scientific, medical, and advocacy communities, and from industry.” Of the 30 members, I was surprised to find only two were from advocacy groups. If we are truly to address the questions that are most important to people living with this disease as I stated in my original email to you, advocates should comprise a larger proportion of the BC-PRG and should be represented on any other advisory groups that are deciding the future directions of breast cancer research. These advocates should also represent a wide range of viewpoints.
In looking at your 2004 report, most of the prevention studies were focused on clinical trials, risk reduction through the use of medications (that are often toxic to patients), developing better animal and cellular models for breast cancer, and some studies looking at diet and breast cancer. Upon searching your etiology section, I did see some research that is beginning to address the links between the environment and breast cancer, but not nearly enough. I hope to see the NCI increase its focus on the environmental links to breast cancer. Can you tell me what the NCI’s plans are in this arena?
As you know, the incidence of breast cancer has nearly tripled over the past 50 years, which cannot be explained solely by changes in our genes, or in our lifestyles. Women who migrate to the United States acquire our breast cancer rates within one generation. Carcinogens in food, water, air, soil, and household products are clearly factors in the breast cancer epidemic. Until a significant portion of the unknown billions of dollars currently spent on breast cancer research are focused on identifying and eliminating what makes us sick, we cannot claim that we are “preventing” breast cancer, or that we are trying to do so. I return to the concern stated in my email: What scientific tools can be developed that will help make the link between information about environmental exposures and health-outcome data?
Is there more that the NCI is doing in funding research on the true prevention of breast cancer? This question is crucial because breast cancer is unlikely to ever become an innocuous, easily treatable disease. Rather, it will always be a disease people don’t want to get.
As for what we mean by “prevention, we said in testimony to the FDA Oncological Drugs Advisory Committee in October 1998 that “risk reduction is not the same as prevention…tamoxifen does not prevent breast cancer; at best, it reduces the likelihood of developing cancer over the short term.” Words matter, especially to the many women who have been prescribed tamoxifen for “prevention” yet develop breast cancer all the same.
Dr. Andrew C. von Eschenbach states on the NCI website that “Someday, we will eliminate cancer, but for today our immediate goal is to eliminate the suffering and death due to cancer.” If we are to eliminate cancer in the future, the research agenda needs to be balanced between funding the important issues of treatment and quality of life for those who have the disease, and the funding of true prevention efforts.
If the NCI is truly committed to the “elimination of suffering and death due to cancer”, the public needs to know what practical steps you are taking toward fulfillment of this goal. Until the research funders get together, there is little reason to hope that the NCI’s goals—shared by all breast cancer activists and advocates—can be met.
Sincerely,
Barbara A. Brenner
Executive Director