The Visionary Leaders and Successive Waves of Breast Cancer Advocacy
The Visionary Leaders and Successive Waves
of Breast Cancer Advocacy
Bob Riter and Hillary Stires, Ph.D.
October is Breast Cancer Awareness month, a name that may seem unnecessary as most are aware of breast cancer. However, this has not always been the case, so this month provides an opportunity for remembering and recognizing the individuals who have defined and energized this movement. Breast cancer advocacy developed as a confluence of overlapping waves largely defined by individuals who made breast cancer, including the patient experience and research to advance treatments, part of the national consciousness in the United States. The waves of breast cancer advocacy have come together over the past fifty years, informing and strengthening one another. Outlined below are some of these waves and individuals who drove change to improve the lives of those diagnosed with breast cancer. The list is not comprehensive but illustrates how the passion and hard work of individuals have helped shape a movement.
Advocates Normalize Talking about Breast Cancer
Wave #1: It’s OK to have breast cancer. We don’t need to hide it. Mary Lasker and Betty Ford set the stage for making it acceptable to talk about breast cancer in public. Lasker played a central role in unleashing research funding for breast cancer from the government and from non-profit organizations such as the American Cancer Society. Additionally, when she was asked to speak about her efforts on the radio, she was told she was not allowed to say the word “cancer” - she used her influence to change this. When Ford was diagnosed with breast cancer shortly after her husband became President in 1974, she spoke openly about her diagnosis and mastectomy, bringing breast cancer out of the shadows for everyone.
Wave #2: Include patients in decision-making. In 1974, Rose Kushner was diagnosed with breast cancer and challenged the conventional practice of one-step surgical procedures in which patients had a biopsy and then an immediate mastectomy if the biopsy found cancer (in some cases, the patient did not even know they had cancer before surgery started). Kushner advocated for the now standard two-step procedure in which the biopsy was performed as an independent event and the biopsy results were then discussed with the patient in the days following the biopsy, giving the patient an opportunity to understand and discuss the treatment options with her surgeon before moving forward. Kushner wrote about her experiences and changed the standard of care.
Advocates Raise Awareness, Concern and Money for Research
Wave #3: It’s not OK to have breast cancer. We need to stop it from happening. A 1993 New York Times Magazine cover featuring the model Matuschka’s mastectomy scarred chest was an “in your face” moment for America. The caption aptly captured the feeling of, “You can’t look away anymore.” The HIV/AIDS of this period taught breast cancer advocates that advocacy often requires activism to create change.
Wave #4: What’s in our environment is making us sick? One way to reduce the risk of developing breast cancer is understanding and eliminating environmental risks. Advocates turned to the writings of Rachel Carson whose 1962 book, Silent Spring, made us aware that the environment can and does impact our risk for developing breast and other cancers. Reducing the risk of developing cancer is clearly preferable to even the best cancer treatment. (We use the term “risk reducing” rather than “prevention” to acknowledge that cancer is not preventable in many cases.)
Wave #5: We need to create a national movement for breast cancer awareness and funding of research. The Susan G. Komen Foundation was created in 1982 by Nancy Brinker in honor of her sister who died from the disease. Before Susan died, Brinker promised her sister she would do whatever she could to “find a cure for breast cancer.” Komen races and events took off throughout the country, raising funds and giving millions of people an opportunity to provide and receive support. Breast Cancer Awareness month began in 1985 to educate women about breast cancer and early detection tests so they could take charge of their breast health. The pink ribbon started in 1992 as a visual reminder of Breast Cancer Awareness month.
Wave #6: The federal government needs to get serious about funding breast cancer research. The National Breast Cancer Coalition (NBCC), led by Fran Visco, has effectively lobbied Congress to fund breast cancer research to the tune of some four billion dollars since 1992. NBCC’s efforts established the Department of Defense peer-reviewed Breast Cancer Research Program (DOD BCRP) leading to a huge impact on the quantity and quality of breast cancer research. An important element is the inclusion of advocates on research review panels of the Congressionally Designated Medical Research Programs.
Advocates Become Partners in Research and Treatment
Wave #7: Patients need to understand breast cancer and work in partnership with their physicians. Dr. Susan Love was a breast surgeon whose book, Susan Love’s Breast Book, first published in 1990, guided thousands and thousands of women through their breast cancer diagnosis and treatment. She broke down what was then a largely impenetrable wall between provider and patient.
Wave #8: Advocates need to be involved in all aspects of breast cancer research – from design through funding decisions. In the 1990s, Project LEAD from the NBCC and the Scientist <-> Survivor Program from the American Association of Cancer Research were established as training programs designed to teach the science of cancer to advocates and to connect advocates and researchers. The programs continue to train advocates. Programs have continued to be established to connect researchers and advocates, including those with a specific focus on researchers who are trainees. The Cornell Community Cancer Partnership and MBCRC Advocate Researcher Program are two examples that continue this work today.
Wave #9: We need to make clinical trials and treatment options available to a more diverse population. People of color, those living in rural areas, low-income individuals, and countless other communities are underrepresented in clinical trials and have limited access to treatment. The problem is well-understood, but the process of finding and implementing solutions is frustratingly slow.
Wave #10: Individuals with metastatic breast cancer must be included in clinical trials and other research. For far too long, breast cancer research focused on primary breast cancer (i.e., the initial diagnosis) and trials routinely excluded those with metastatic disease. Several organizations founded by patients with Metastatic Breast Cancer emerged to focus on the needs of patients with metastatic disease including the MBC Network (MBCN) and Metavivor. Over time additional organizations like Twisted Pink and Theresa's Research Foundation were established with a focus on Metastatic Breast Cancer as well. The Metastatic Breast Cancer Alliance was formed in 2013 and would have a major impact on shifting attention to Metastatic Breast Cancer and bringing advocacy organizations together.
Two future waves are emerging, and advocates are likely to play important roles
Wave #11: The economics of cancer care at a societal level should be considered. Shortages of relatively inexpensive generic cancer drugs are becoming widespread, and “me too” drugs that work essentially the same as drugs already offered by other companies continue to be developed. The FDA does not factor cost in the approval process, but just recently, Medicare has started to negotiate the prices of ten expensive drugs, including one in oncology. Advocates should advocate for a more rational approach to spending money on cancer care.
Wave #12: We should be striving for health justice both within the United States and internationally. The United States is the acknowledged leader in the development of new cancer diagnostics and treatments. It is critical that in addition to more innovation, there is an emphasis on ensuring everyone has equal access to those innovations. Advocates need to be a strong voice to make this happen.
Breast cancer advocates have played essential roles in the progress relating to the risk reduction, diagnosis, treatment and research of breast cancer for more than fifty years. These changes were initiated by individuals who thought, “We can do better.”
We can still do better, and advocates will continue to lead the way.