As Breast Cancer Action moves forward, challenging assumptions and inspiring change, it does so according to its understanding of the breast cancer epidemic and the experiences of women and men around the country. BCA sees and frames breast cancer issues in unique ways, ways far different from mainstream views. The purpose of this document is to ground and guide our policy work by clearly presenting this perspective on breast cancer issues — and cancer in general. In doing so, BCA seeks to fundamentally change how these issues are understood by the public, and how they are approached and resolved by the cancer industry, government agencies, the media, and the health care system.
Major assumptions underlie the mainstream breast cancer movement and breast cancer policy. These fall into five broad areas, each of which is addressed in the balance of this document:
- Research funding: The amount of research funding and what it’s used for.
- Treatment issues: Standards used for approving new treatments and devices used in breast cancer diagnosis and treatment.
- Environmental health issues: Reducing the risk of breast cancer in individuals and preventing breast cancer in populations of people.
- Differences in incidence and mortality: The social context in which these differences arise.
- The language of breast cancer: How breast cancer is talked about.
BCA challenges the idea that we need more funding for breast cancer research. Billions have already been spent, and millions more are raised each year, leading to the growing belief that many breast cancer issues have been solved. But the fact remains that each year nearly a quarter of a million Americans hear the words “you have breast cancer,” and another 40,000 die of the disease each year. And no one knows how much money is spent on breast cancer research each year by the hundreds of entities and businesses that raise or spend research funds.
Since so many issues remain to be addressed in breast cancer, BCA works to ensure that breast cancer research funding is being well spent on the many remaining challenges. More funding is not the answer; properly focusing the available funding is.
Further, BCA believes that everyone affected by breast cancer is entitled to an accounting of where research funds have already been spent, and what has actually resulted from all of this research funding. Only then will we fully understand what is known and what remains to be learned. From such an informed position, future breast cancer research dollars will be spent more wisely on topics of most importance, building on work already completed.
There is also a disturbing lack of coordination of breast cancer research efforts, which are conducted by hundreds of different entities. Without coordination, funds are likely being used to unnecessarily duplicate efforts underway elsewhere. Lack of coordination also results in the failure to address the most pressing issues in breast cancer.
BCA believes that research funding must focus on the issues of treatment, risk reduction, and breast cancer inequities enumerated in this policy paper and addressed by BCA’s strategic priorities. And such research efforts must be combined with education, activism, and policy changes to tackle the still unmet challenges in breast cancer.
BCA believes that there is no “cure” for breast cancer that will work for everyone, and there likely never will be. While breast cancer treatments will cure some patients, and prolong the lives of others, individual women and their specific cancers respond differently to treatments. There will likely always be some situations where what is happening to a woman or man with breast cancer will always be ahead of the ability of science and medicine to successfully intervene. Given this reality, people need useful information about treatments and new treatments that are the most effective and least toxic possible at prices that assure their availability. People who have metastatic breast cancer need therapies that maintain their quality of life and that balance quality against the mere prolonging of life.
The Need for Unbiased Information
There are many kinds of breast cancer, and many treatment options can be combined in various ways. There is no single treatment approach to the disease. In this environment, people need useful, understandable information in order to make informed decisions about appropriate treatment options.
This treatment context is why BCA believes that the treatment information that women and men with breast cancer receive must come from unbiased sources that are free from the influence of the companies that make those treatments. Corporate influence is usually manifested in one of two ways: either when the company making the treatment or device at issue directly provides the information about their product, or when that company provides funding to breast cancer organizations in hopes of having that funding influence the type of information that the organization provides to people.
BCA is deeply committed to providing information that is not only free of influence by those with a financial interest in breast cancer but that is also free of the appearance of that influence. This commitment is manifested in BCA’s refusal to accept funding from pharmaceutical companies or any company profiting from cancer.
Work for New FDA Standards for Breast Cancer Drug Approval: The Need for More Effective, Less Toxic Treatments
Breast cancer treatments should be both the most effective and the least toxic possible. The standards used by the FDA for the approval of new breast cancer therapies and devices should assure this outcome. The interests of patients must come before the profit interests of companies manufacturing new treatments and devices for use in breast cancer.
Because there are many treatment options for breast cancer already available, new breast cancer treatments should be approved by the FDA only if they are shown to either improve the survival of or improve the quality of life for breast cancer patients. If a new therapy is shown to be effective for survival or quality of life but is not better than existing treatments already on the market, it should be approved by the FDA only if it costs less than the currently available treatments.
Quality of Life Matters: Develop New Measures for Evaluating Quality of Life
As anyone who has had breast cancer treatments or anyone who is close to those who have had such treatments knows, many of these treatments severely decrease the quality of the patient’s life. Some of these effects are temporary, some are not.
When breast cancer is so aggressive that it may result in a woman’s death, we need to make sure that she is treated in a way that makes the quality of her life as important as its length. In order to achieve this, researchers need to develop tools for measuring quality of life that do not currently exist.
Accessibility of Treatments
As new therapies are developed, they must be affordable and readily available to everyone who needs them. Universal, single-payer health care must be put in place to assure this accessibility.
Targeting Therapy — Giving People Only What They Need
Ultimately, science needs to develop and make easily available tools that will enable us to determine who will benefit from specific treatments and who will not. Only then will we be able to avoid the unnecessary over-treatment of women who won’t benefit, and to make sure that patients who will successfully respond to specific treatments actually receive them.
This issue presents both a scientific and a cultural challenge. While we have long been promised effective targeted therapies for cancer, the fact is that most people diagnosed with breast cancer still receive multiple systemic treatments, even if they are also receiving a “targeted” treatment. Most of the targeted therapies are tested in combination with nontargeted treatments, so that the less toxic benefit of the targeted treatment is lost. In addition, our medical culture finds it easier to add new treatments to existing protocols than to eliminate treatments shown to be less effective.
For example, oncologists were quick to add anthracyline-based chemotherapies like Adryamicin to the treatment of breast cancer, on the basis of relatively little data. Since then information has emerged indicating that relatively few women benefit from this treatment, but doctors have been reluctant to stop using it. And though the practice in Europe is to treat women who have hormone-responsive disease with hormonal therapies instead of chemotherapy, in the United States, we are much more likely to treat with both.
In the current treatment environment where there are many options and no good evidence of what will work for people, patients are given a menu of options and have to make choices for themselves, presenting an often terrifying challenge.
To change this treatment environment, available therapies must help people, and we must know they will be helped before administering those therapies. Since we do not yet have this kind of information, people must be fully informed about what we know — and don’t know — about treatments so they know not only about what treatments may do in prolonging their lives but also how such treatments may adversely affect the quality of their lives. And all treatments must be priced so that they are readily available to anyone who needs them.
While it is possible that protecting people from environmental exposures will reduce their risk of developing breast cancer and other cancers, we will never be able to say with certainty that they will never get breast cancer. At the same time, we should be able to see a smaller number of cases of breast and other cancers in large populations of people when we reduce exposures.
The primary prevention of breast cancer means taking steps to keep breast cancer from ever developing. BCA believes that the primary prevention of breast cancer in populations of people, and the reduction of the risk of breast cancer in individuals, must focus on identifying and eradicating the involuntary environmental exposures that are contributing to the increased incidence of the disease. Since no one can honestly promise to be able to prevent a single case of breast cancer by eliminating environmental triggers, we refer to breast cancer risk reduction in individuals and prevention of breast cancer in groups of people by making the policy changes that will reduce exposures to environmental triggers of cancer. The “Stopping Cancer Where It Starts” initiative refers to these larger policy changes of reducing everyone’s exposure to toxics and other cancer triggers, rather than personal changes made in hopes of keeping individuals from getting breast cancer.
Beyond Lifestyle and Toward Policy Change
Issues of lifestyle that can be controlled by individuals are important but are not BCA’s focus. We are concerned that this emphasis leads some women to blame themselves for getting sick. While it is laudable that others focus attention on healthy lifestyles, this information must be balanced with information on exposures that are outside a woman’s individual control and can contribute to her risk.
A Precautionary Approach
Sufficient scientific information already exists to warrant policy changes to reduce exposures of toxins linked to breast cancer. Where sufficient evidence exists that something used in the environment is contributing to the risk of cancer, the manufacturers or proponents must be required to either show that the danger does not exist or to use less toxic alternatives if they are available. The decisions about whether the exposure should be reduced or eliminated, and what alternatives to use, must be made with the input of the community affected by the exposure.
Balancing the Research Portfolio
While policy changes move forward, society needs to balance current research expenditures between treatment for those living with cancer now and reduction of the risk of breast cancer in future generations. Current research funding is heavily focused on developing new treatments for cancer, leaving underfunded the research necessary to keep people from developing the disease. As stated above, we don’t necessarily need more funding for breast cancer research, but we do need to refocus how the available funds are spent.
Developing New Scientific Tools
Calling for more environmental research is not enough. Instead, we need research directed to developing tools that will allow us to link health outcome data to environmental exposure information. Health outcome data, as wells as information on environmental exposures and their potential for contributing to breast cancer and other cancers is becoming increasingly available. But we do not yet have the scientific tools necessary to link the exposure information to the health outcome data. This is where environmental research should focus now and into the future.
Addressing Underlying Causes, Not Substituting Diseases
BCA’s approach to risk reduction is based on the premise that we must address underlying causes to truly reduce the risk of the disease, and that any pill powerful enough to reduce a person’s risk of breast cancer is very likely to cause a different disease. Moreover, focusing on the development of pills to “prevent” breast cancer diverts resources from the environmental research that is needed. We therefore oppose devoting resources to the development of pills to “prevent” breast cancer.
Many communities bear a disproportionate burden of environmental exposures, which has implications for their health and well-being. These affected communities are entitled to participate in decision making on how to address these exposures. And the inequities that lead to this disproportionate exposure need to be addressed by the cancer community.
Disparities — differences — in breast cancer incidence and mortality between and among different racial and ethnic groups are well documented. Social, political, and economic inequities play an important role in these differences, yet they are mostly ignored in discussions and research about breast cancer in different communities.
Social Determinants of Health
While considerations of the social determinants of health are beginning to emerge in a number of health fields, the cancer world still focuses on genes and differences in screening patterns. Thus, while many people in public health understand that we can reduce the burden of asthma by focusing on the physical environments in which people live, the conversation in cancer focuses on the biological differences between people, or differences in personal behavior.
For example, a recent study that focused on teenage girls showed that regular physical activity may reduce their risk for breast cancer later in life. A resulting news article admonished readers to “get your daughters off the couch.” Similarly, studies have shown an increased risk for breast cancer in postmenopausal women who are overweight.
While these types of studies point to what might be done to reduce breast cancer risk, they miss the larger context of the social, economic, and historical reality in which many people lead their lives. The choices people make are shaped by the choices that are available to them.
A healthy diet and regular exercise are important for all of us, but they are about far more than self-discipline. Some neighborhoods have easy access to healthy and organic foods; others have only fast food restaurants and liquor stores nearby. Some communities have safe streets and green environments in which to run and play, while others are unsafe to walk even during the daytime. Some have safe housing with minimal exposure to environmental contaminants, while others are near toxic release sites or are built with cancer-causing materials. Like the hazardous waste facilities, these neighborhood differences follow a pattern. They reflect communities with differences in race and income.
BCA knows that differences in breast incidence and outcomes are about far more than lifestyle choices and biology. BCA has changed many conversations in breast cancer, and we must change this one as well, so that people understand the social justice lens through which breast cancer needs to be seen and studied so that we eliminate the differences in breast cancer outcomes that affect different groups of people.
Therefore, BCA aims to change the focus of discussions and research on inequities in a way that does not lead to racial or genetic stereotyping or marginalizing of affected groups.
The issues that BCA is addressing as it moves forward clearly challenge some basic assumptions in cancer and cancer advocacy. Some of those assumptions are reflected in the language that is used when we talk about breast cancer. As an education and advocacy organization, BCA works primarily with words. We know that how we and others describe breast cancer influences what the public understands about the disease. And what the public understands determines what people demand in terms of action.
As a breast cancer activist organization and as movement watchdogs, we know that we must choose words carefully. Following is a list of words or phrases often used in breast cancer, how they are viewed by the mainstream, and how BCA defines them. By being consistent in our language, we strive to be clear about what we believe can — and cannot — be accomplished regarding how research is conducted, how breast cancer is treated, how to further identify and eliminate the environmental links to breast cancer, and how to change the public’s understanding of differences in incidence and mortality.
What does “cure” mean?
- Mainstream definition: Cure means surviving five years following a diagnosis of breast cancer.
- BCA’s definition: A person is cured if, following a breast cancer diagnosis, s/he lives out her/his normal life span and dies of something else that has not been caused by her/his breast cancer treatment. Because breast cancer takes many forms, no one “cure” for the disease will ever be found.
- While many people will be cured of breast cancer, BCA believes that long-term survival is not the same as a cure. Very few people — such as women who are treated appropriately for “in situ” breast cancer (cancer that, when diagnosed, does not show the ability to spread beyond the breast) — can be honestly promised that they have been cured after treatment.
Long-term survival with metastatic disease — which often involves continuing treatment with often devastating and sometimes life-threatening side effects — is not a cure. Absent some intervening fatal illness or accident, a woman diagnosed with metastatic breast cancer will die of her disease, often undergoing a series of treatments over a long period of time. BCA aims to change how metastatic breast cancer is characterized so that it is more in line with the facts as we know them. Instead of reaching for an unrealistic “cure,” or framing metastatic disease as a “chronic” condition that can be successfully managed over a long period of time by the person who is ill, we must acknowledge that metastatic disease is almost always fatal. And we must demand more effective and less toxic treatments that not only extend the lives of women with metastatic disease, but also preserve the quality of life that they experience.
What does prevention mean?
- Mainstream definition: Prevention occurs when individuals take lifestyle measures or medication that will assure that they never develop breast cancer.
- BCA’s definition: While it may be possible to reduce the incidence of breast cancer among a population of people, currently available measures cannot completely prevent an individual from getting the disease. Individuals may be able to reduce their risk of breast cancer.
- With the current state of knowledge, it may be possible for an individual to take steps to reduce the risk of breast cancer, but it is not possible for an individual to completely prevent herself/himself from developing the disease. And, so far, the medications available that reduce the risk of breast cancer actually increase the risk of other diseases.
BCA focuses on social, technological and political actions that reduce involuntary exposures to environmental carcinogens. Such actions may reduce the incidence of breast cancer in populations or groups of people. This approach is consistent with more sustainable and environmentally sound policies. However, we recognize that such actions will protect some people while others may not benefit. Nor will we be able to assure any individual that, as a result of reducing exposures, she or he will not develop breast cancer.
What does ending breast cancer mean?
- Mainstream definition: Ending breast cancer means creating a world in which no one develops breast cancer
- BCA’s definition: Completely ending breast cancer is an unattainable goal. Breast cancer is a disease that has been with society at least as far back as the Greek civilization and will very likely always be with us. Breast cancer cannot be completely eliminated. But the breast cancer epidemic — the high incidence of the disease in general, and particularly in young women — can be ended through education, activism, and broad policy changes.
- Everyone dies of something, and cancer is often a disease that develops as people age and the systems that their bodies use to regulate cell growth cease to function properly. We can and must make progress in reducing the number of women and men suffering from and dying from breast cancer.
What does “breast health” mean?
- Mainstream definition: Breast health refers to breast cancer issues without mentioning the word “cancer.” Most frequently it refers to breast cancer screening.
- BCA’s definition: Breast health is a term that masks the realities of breast cancer and of women’s health more generally. It builds on a “body part” approach to health that has no real meaning for women’s lives. Accordingly, BCA does not use the term “breast health” and refers instead to “breast cancer.”
- Women are either healthy or they are not. They can be free of breast cancer and yet not healthy in other ways. BCA is concerned about women as human beings, not as breasts. Women are more than their body parts, and the language we use to describe women’s health should recognize this.
Difference in breast cancer incidence and mortality
- Mainstream definition: Disparities between ethnic groups in the number of cases of breast cancer and the numbers of deaths from the disease are seen as the result of differences in screening patterns, access to care, and biological differences among different populations of people.
- BCA’s definition: Many of the differences in breast cancer incidence and mortality are the result of social and economic factors that are unequally distributed in our society, rather than of biological differences or differences in access to medical treatment. BCA therefore refers to these differences as “inequities, “not “disparities.”
Conclusion: Working Toward Changing the Status Quo
Breast Cancer Action’s cancer policy perspective is based on the premise that change occurs because people demand it, coming from the bottom up, not the top down. Power relationships that now dominate how decisions are made — about treatment and research — must be challenged if we are to end the breast cancer epidemic.