(Published in the British weekly journal, New Scientist, May 23, 2007)
The beginnings of the HIV/AIDS epidemic in the 1980s ushered in an era of grassroots patient advocacy and activism. Until then, direct political action to speed the pace of medical research was unknown. Militant organizations such as ACT-UP had a profound influence on the course of HIV/AIDS research and public policy in the U.S. By the 1990s, cancer advocacy groups had also mastered the art of getting media attention and research funding through the skillful combination of public relations and lobbying. Among the most successful of these were groups representing people with breast cancer.
If the effectiveness of lobbying were a function of the size of the population affected by a disease, then prostate cancer research would be more generously funded than that for breast cancer, according to the authors of a new book, Cancer Activism. In fact, prostate cancer, which in the U.S. strikes more individuals than breast cancer – 234,460 compared with 214,640 in 2006, according to the American Cancer Society – comes a distant second in the amount of media attention and public funding it receives. Last year, the U.S. government spent about $557 million on breast cancer research, compared to $309 million for prostate cancer.
Paradox in Patient Activism
This paradox piqued the interest of two U.S. social scientists, whose book examines the history, structure, and modus operandi of what they call GSOs (grassroots survivors’ organizations), paying particular attention to the central role of women. Feminism, the authors believe, has been a crucial factor in the success of breast cancer advocacy. Much of the dynamism of the early breast cancer lobbying effort was fueled by a belief that research into this disease, which overwhelmingly strikes women, had long been hampered by a male-dominated medical and political establishment.
One of the book’s most interesting points is how breast cancer activists managed to put a youthful and attractive face on the disease. In the media, people with breast cancer are frequently depicted as young and beautiful, or as the mothers of young children, struck down in their prime. The average age of people with breast cancer mentioned in magazines is around 40, whereas, in reality, 77 percent are over 50 when diagnosed. Breast cancer has had as its public face the celebrities Brigitte Bardot, Ann Jillian, and Linda McCartney. Prostate cancer’s poster children were Senator Bob Dole and General Norman Schwarzkopf. Older American men still tend not to talk about having prostate cancer, but their reticence does their fellow sufferers no favors.
Whether breast-cancer groups can maintain their dominance is questionable, I believe. GSO advocates have to work even harder just to keep funding at present levels, and this can lead them to exaggerate the dangers of developing and dying of the disease.
GSO’s and Patient Advocacy
The book points out that financial backing from the pharmaceutical industry is an essential component of GSO success – but there are strings attached. “GSOs need to be careful in aligning themselves with pharmaceutical companies,” the authors caution since such backing can subvert objectivity. Several breast cancer GSOs have a special relationship with the drug Herceptin, one of the few treatments for an aggressive form of breast cancer. However, in lobbying for the greater availability of this drug, activists may have promoted its effectiveness beyond what the facts allow while downplaying side effects, such as an increased risk of heart damage.
Taking money from drug companies is a slippery slope for advocacy groups. While the authors mention this, I felt they failed to sufficiently highlight the danger of such groups becoming fronts for profit-making enterprises. There is no doubt that these cancer activists are motivated by genuine altruism, but the same cannot be said for their industry sponsors.
Overall, Cancer Activism is a well-written and engrossing account of how a determined group of grassroots leaders – many of them feminists – have changed the face of medical research.
Original Publication 2007