I was recently asked by the magazine New Scientist to review an intriguing new book on the history and influence of patient advocacy groups. Here is that review, as published in New Scientist, May 26th 2007.

The beginnings of the AIDS epidemic in the 1980s ushered in an era of grassroots patient activism. Until then, direct political action to speed the pace of medical research was unknown. But militant organisations such as ACT-UP had a profound influence on the subsequent course of AIDS research and public policy. By the 1990s, cancer advocacy groups had also mastered the art of getting media attention and public funding for research through the skillful combination of public relations and lobbying. Among the most successful of these were umbrella groups that represent breast cancer survivors.

If the effectiveness of lobbying were a function of the size of the population affected by a disease, then prostate cancer would be more generously funded than cancer of the breast. In fact, there will be 218,890 new cases of prostate cancer in 2007 (with 27,050 deaths). By contrast, there will be 181,000 new cases of breast cancer (with 40,900 deaths). But prostate cancer comes in a distant second in the competition for media attention and public funding. Last year the US government spent about $700 million on breast cancer research, compared to $390 million for prostate cancer.

This paradox has piqued the interest of two US social scientists, whose excellent new book Cancer Activism examines the history, structure and modus operandi of what they call GSOs (grassroots survivors' organisations), paying special 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 that 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, breast cancer patients are frequently depicted as young and beautiful, or as the mothers of young children, stricken down in their prime. The authors show that the average age of breast cancer patients in magazines is around 40. In real life, however, 77 per cent of breast cancer patients are diagnosed when they are over the age of 50.

The authors quote one lobbyist saying that prostate cancer advocates "put out old, white men as the face of prostate cancer." Prostate cancer's poster children were General Norman Schwarzkopf and Senator Bob Dole. By contrast, breast cancer has had as its public face the attractive celebrities Brigitte Bardot, Ann Jillian, and Linda McCartney. Older white American men still tend not to talk about having prostate cancer, considering it a sign of weakness. But their reticence is box office poison.

Whether breast groups can maintain their dominance is questionable. The public may suffer compassion fatigue when the same heartrending message is repeated endlessly. GSO advocates have to work harder just to keep funding at present levels, and this can lead them to exaggerate the dangers of contracting and dying of the disease. "An elevated perception of risk...adds pressure to public policymakers to take action," the authors note.

The book points out that the financial backing of 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 the activists' 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 their lobbying for expanded availability for this drug, activists may have promoted its effectiveness beyond what the facts allow, while simultaneously downplaying its propensity to cause heart damage or its expense.

An article published in the British Medical Journal in May this year revealed that Cancer United, a pan-European cancer advocacy group that lobbies for full funding of cancer drugs in Europe, receives generous funding from Roche, the manufacturer of Herceptin. Taking money from drug companies is a slippery slope for advocacy groups. While the authors do mention this, I felt that they downplayed the danger of such groups becoming mere fronts for profit-making enterprises. That these cancer activists are motivated by genuine altruism there is no doubt. But the same cannot be said for their industry sponsors.

Overall, Cancer Activism is a well-written and thoroughly engrossing account of how a determined group of grassroots leaders - many of them feminists - have changed the face of medical research.

Cancer Activism: Gender, media and public policy by Karen Kedrowski and Marilyn Stine Sarow, University of Illinois Press, $40.

--Ralph W. Moss, Ph.D.

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