Patients to Agents: Transnational Breast Cancer Advocacy in the United States and Germany

In recent years, new forms of personal identities have accrued significant political power. One such identity is medical patients, and nowhere is their political clout clearer than in the American breast cancer advocacy movement. But have the advocacy and fundraising models developed in the United States transferred to Europe? This seminar offers some initial answers to this question by delving into the recent history of breast cancer advocacy in Germany and tracing American influences there. We will discuss several different forms of American influence, as well as their limits, ending with a brief discussion of the possible implications these new forms of advocacy may have for breast cancer policy formation and research funding distribution.

Event Summary:

The pink ribbon has become an instantly recognizable sign of support for the breast cancer awareness movement– and the support is everywhere. NFL “pink outs”, water bottles with little pink ribbons, and bright informational flyers about screenings are found all year, but especially during October, Breast Cancer Awareness Month. This was not always the case, and a few decades ago, breast cancer was a very taboo topic to discuss in public in the United States and Germany.

History

Until recently, not only was breast cancer a taboo topic to discuss with others, but information about prevention, treatment, and recovery was very limited. Doctors frequently only presented one option for treatment, the Halsted Radical Mastectomy (a full mastectomy). In 1978, 70 percent of cases were treated with the Halsted Radical Mastectomy, but there was little information about other treatment methods, attention given to emotional needs, and little to no community among survivors. In West Germany specifically, much of the pressure to not publicly discuss breast cancer came from doctors themselves. Breast cancer diagnosis and treatment was a much more solitary journey rather than a community of support.

The breaking of the taboo in the United States began in the 1970s as public discussions about breast cancer and treatments began, encouraged by celebrities such as Shirley Temple Black and Betty Ford coming out to discuss their experiences and diagnoses. Activist charities began to raise funds for research and provide support to survivors and those undergoing treatment. A 1993 New York Times Magazine cover featured activist Joanne Motichka with a dress designed to reveal the right side of her chest where she had received a mastectomy. Aspects of the growing breast cancer activism movement drew inspiration from AIDS activism, including basing the famous pink ribbon off of the red AIDS-awareness ribbon in the early 1990s.

Communities of support began to grow around breast cancer patients and survivors that allowed them to take an active role against the disease rather than passively and privately dealing with the disease. A new identity of a “female patient activist” who are “warriors fighting the disease” forms.

During this time, Germany had a different type of movement. In September of 1996 the magazine Emma published a cover of a woman with a mastectomy, but the article was more “militant,” and while calling for more discussion, focused more on demanding that the medical industry address the “genocide on women.” Self-help clinics began to appear in Germany, especially in large cities. 

Susan G. Komen

In 1982, the Susan G. Komen Breast Cancer Foundation was founded, as well as other fundraising charities in the 80s and 90s. The breast cancer activists involved with the foundation used events, charities, and various forms of lobbying to represent and support women with breast cancer and to raise money for research. 

Women in Germany, many of them with connections to America, founded a German affiliate of Susan G. Komen. The German affiliate was less concerned with providing access to care and more focused on changing doctors’—and society as a whole’s— attitude towards breast cancer. They aimed to share experiences and start public dialogues about breast cancer. 

However, many of the Susan G. Komen Foundation’s techniques that worked in the United States could not work in Germany, either due to different laws about campaigning and fundraising in the medical field or to cultural differences. Komen Deutschland had to adopt different techniques but ultimately held “Races for the Cure” and other successful fundraising events. 

Other German Transplant Organizations

The German Cancer Society (an export of the American Cancer Society) has expanded its support program that brings trained survivors into hospitals to talk with current patients. Europa Donna is an international organization modeled after the National Breast Cancer Coalition in the United States that focuses on education and fundraising as well as lobbying on behalf of breast cancer patients and survivors. Various companies in Germany, such as Estée Lauder, have adopted methods such as now-famous “pink branding” that raise awareness, spread information, and give a portion of proceeds to breast cancer issues. 

Discussion:

• About criticisms of the pink ribbon model: Many view the pink ribbon as too commercial and a way for companies to earn a profit in the name of philanthropism, even when they do commit to donating a portion of their proceeds. Many survivors also feel that it leaves them with very few options for how to publicly exist as a survivor.
• Addressing the issues of male breast cancer, gender, and masculinity surrounding the movements and activism: Male breast cancer survivors have very limited room within the movements, though more support for them is coming about now. Dr. Bellotti hopes to find more information about this as she continues her research.
• About the effect of the differences in U.S. and German healthcare and treatment types (such as the preference for the Halsted Method in the U.S.): The U.S. understanding of breast cancer and how it spreads led American doctors to prefer taking out as much possibly diseased tissue as possible. Additionally, no clinical trials were done on the method until the 1960s, and even then, there was no comparison to other types of treatment. In the 70s and 80s, clinical trials proved that the Halsted Method did not result in greater survival rates compared to simple mastectomy or lumpectomy.
• About if there have been critiques against the American methods in Germany or of breast cancer as a celebrity disease: Yes, there have been critiques to the disproportionate amount of resources dedicated to breast cancer vs other forms of cancer. As to German critiques, Dr. Bellotti will research this more in Germany.

Event summary by Halle Foundation/AGI Intern Emily Lent

Supported by the DAAD with funds from the Federal Foreign Office (FF)