Advocate Perspective

Excerpted from the Breast Cancer Deadline 2020® 2nd Annual Progress Report

In NBCC’s 2011 Baseline Report we gave our advocate perspective on the state of breast cancer. As that perspective described, there has not been sufficient progress in any area of breast cancer—treatment, prevention, quality care, public policy—over the past many decades. Save one: there are booming breast cancer industries in both the for- and non-profit fields that seem primarily focused on their own survival rather than the goal of ending breast cancer. There is no need to repeat that perspective here, as the Baseline Report remains the best statement of our positions.

That is the case because as this 2012 report makes clear, little has changed. There was never an expectation by advocates that one year would “turn it all around.” The Baseline Report described the status quo that has been developed over more than 40 years and has been designed to achieve incremental, if any, progress. As a result, looking at the existing infrastructure and business of breast cancer one would expect to see exactly what happened: there have been no significant changes in preventing, finding, treating or curing breast cancer over the past year. The one major exception is NBCC’s Breast Cancer Deadline 2020® campaign which has progressed rapidly as is highlighted in this 2012 Progress Report.

As advocates, we believe we must begin talking about breast cancer issues differently. This past year saw a controversy over access to screening dominate not just breast cancer news stories but also the general news cycle. Susan G. Komen for the Cure’s decision to withdraw, and then restore, grant funding eligibility to Planned Parenthood was front page news. The conversation was often couched in terms of a concern over whether Planned Parenthood’s constituency would have access to screening. The uproar shows that there is still such a strong belief in the value of mammography screening, despite years of research showing marginal benefit at best. The fallout from that controversy is not yet fully understood.

The good news is that, despite the media focus on this controversy this past year, the conversation is beginning to change in the advocacy and scientific communities, away from awareness and early detection, and a focus on the cell, to ending breast cancer. In science, an overwhelming amount of research continues to focus on the genes involved with cancer, and even on mutations involved with the deadly spread of breast cancer. Entire research programs that span several years are established and flourish around the discovery of these mutations. These efforts held promise, received funding, have led to publications and career development, and fueled the pipelines of Pharma and biotech companies. But we now know, after many years, that these efforts are not likely to lead to anything more than incremental improvement for patients, and it is time to expand that focus. Tumors are constantly evolving, and targeting particular mutations is maybe nothing more than a  stop-gap, temporary solution. Rather than focusing on the tumor cells and on mutations, NBCC believes that science should look at the whole system in which cancer develops, within and without the body, to gain an understanding of why and how it develops and spreads, and with an eye toward learning how to intervene and prevent deaths. We have  seen science move a bit in this direction, toward asking big questions that could have real impact.

Advocates must not take the easy way out, accepting sound bites as answers. In order to move forward toward the goal of Breast Cancer Deadline 2020®, it is necessary to do the hard work of critically analyzing policies and research and challenging the status quo in a meaningful way. That critical analysis must apply to all issues in breast cancer, including drug approval, the substance of the research, the priorities set, the allocation of funding, and access to care.

Advocates must not take the easy way out, accepting sound bites as answers. In order to move forward toward the goal of Breast Cancer Deadline 2020®, it is necessary to do the hard work of critically analyzing policies and research and challenging the status quo in a meaningful way.

For example, while science and the conversation may slowly be moving in the right direction, there is still too strong a push on getting more drugs to the clinic with insufficient evidence of real benefit. If we are told the FDA takes too long and makes it too difficult to approve a drug, we should look carefully at the facts. What do we want from breast cancer drugs? Short of a cure, we want significant improvement in overall survival and quality of life. What are we willing to pay in terms of toxicity and financial burden? Then we must ask what approval process is needed to make certain we have access to drugs that meet our standards.

This past year, primarily because of the reauthorization of PDUFA, the program that gives the FDA the authority to collect fees from the pharmaceutical industry to support the drug review process, it appeared that there was an increase in campaigns to make it easier to get drugs approved. This push for approval earlier in the research process, with preliminary results that fall short of clinical impact, seems to be growing, despite the lesson learned from the accelerated approval of Avastin and its subsequent withdrawal. The lesson learned by NBCC advocates from that story was that stronger evidence of real benefit—overall survival and quality of life—and a better understanding of risks must be demonstrated before a drug is approved. One important part of the Avastin story that seems to be overlooked is that, in large part because of accelerated approval, Avastin was given to many women with early breast cancer, and we now know that it not only had no benefit but also did harm. While NBCC applauds the FDA’s withdrawal of approval for Avastin, accelerated approval in the first place meant more women were harmed, more health care dollars were spent on an ineffective drug, and more individuals and policy makers, reacting to headlines, fought to overturn the FDA’s decision and undermine its credibility.

It is our perspective that the failure to look more critically at data and information also extends to various analyses of research funding. One area of apparent progress can be attributed directly to the efforts of the advocacy community. In reports of government breast cancer funding, there are currently significantly more dollars devoted to metastasis research.1,2 However, as in every area of research, it is important to look critically at how these dollars are spent. Just as funneling significant dollars to breast cancer research created a breast cancer research industry that has not resulted in sufficient progress, it would be counter-productive to create a “metastasis” research industry that does not result in meaningful results for patients. Just labeling a research proposal as “metastasis” is not enough. We must take a critical look at the research and encourage only those efforts with the highest potential for meaningful outcomes for patients. We must ask different questions and apply a new perspective. Will finding a gene mutation that suppresses or drives metastasis in a subset of women be enough? Is this really different from the majority of research looking into tumor suppressor genes and the like? Do we know whether targeting a mutation with a drug would provide more than a few weeks or months of additional life for a subset of women? How devastating would the side effects be to a person’s quality of life? And how can we prevent metastasis? How can we understand its causes? We should be willing to look at this issue from different perspectives because the current thinking has not given us the answers we need.

One area of apparent progress can be attributed directly to the efforts of the advocacy community. In reports of government breast cancer funding, there are currently significantly more dollars devoted to metastasis research. However, as in every area of research, it is important to look critically at how these dollars are spent.

While it is clear that more dollars are being reported as allocated to metastasis research, the area of prevention research has not benefited in the same manner. Research focused on primary prevention is receiving a much smaller portion of the pie than metastasis research.[1,2] Many people still believe that breast cancer screening is prevention, or at least will prevent deaths from breast cancer. Research into the causes of breast cancer has proven difficult in the past, but new knowledge and new tools must be applied in a concentrated effort at understanding the development of the disease. Much of the past work assumed breast cancer was one disease. Applying new tools for bioinformatics with new knowledge of the immune system and subtypes of breast cancer will be key in achieving Breast Cancer Deadline 2020®.

As laid out in this report, we, advocates, are leading a campaign to end breast cancer. But we cannot do it alone. All advocates who share that goal must reach out to their networks, their communities and contacts to bring all stakeholders into the Breast Cancer Deadline 2020® campaign. Over this year we must significantly increase the number of groups and individuals who are part of the campaign and make certain that leaders in government, industry and all areas embrace the deadline with courage and conviction to make ending this disease a priority. From the halls of Congress to the laboratories and boardrooms, the approach to breast cancer must change. And, this effort cannot be just a national effort; global networks, leaders and stakeholders will need to be engaged. More stakeholders—in the US and abroad—must join in the collaborative and catalytic work on the Artemis Project® to leverage existing financial resources and harness the knowledge and experience of years of research. The goal is to take what is known and build upon it to catalyze innovation for the sole purpose of ending breast cancer.

________

1. National Cancer Institute Funded Research Portfolio, 2010 http://fundedresearch.cancer.gov/
2. Department of Defense Breast Cancer Research Program: Funded Research, FY 2010, Personal Communication with Program Director.

This entry was posted in Breast Cancer Deadline 2020, National Breast Cancer Coalition and tagged , , , , , , , , , . Bookmark the permalink.

Comments are closed.