by Ellen Leopold (article appeared in the January 2001 issue of The Source)
Millions of American women are now running, swimming, and climbing for breast cancer, raising extraordinary sums of money for charities whose workings they know almost nothing about.
This odd throwback to the earliest breast cancer fund-raising campaigns of the 1930s may go unnoticed because the outward appearances are so radically changed. But although spandex and sweat bands have replaced white gloves and hats, and biking has replaced baking, women are once again donating their time, energy, and money, no questions asked.
The Race for the Cure, one of the oldest of these athletic events, is run by the Susan G. Komen Breast Cancer Foundation, a nonprofit organization set up to fight breast cancer in 1982. In 1998, the most recent year for which figures are publicly available, it raised over $54 million in 85 separate races. (This is a gross number. Komen will not say how much of this amount went to fund-raising expenses and how much to breast cancer causes.)
Joining the bandwagon in the early 1990s, cosmetic giants Avon and Revlon introduced sporting events of their own. Revlon’s Run/Walks for Women in New York and Los Angeles netted $4 million in 1999 ($17 million between 1993 and 1999), which the company contributed to breast cancer charities. The Avon Breast Cancer Crusade, which sponsors three-day, 60-mile walks, netted $15.6 million from its four 1999 events.
The impressive sums raised and contributed by these corporate charities are, of course, not gifts in the usual sense (i.e., donations out of company profits). They are the contributions made by millions of volunteer athletes and their supporters, bundled together, repackaged, and released under the corporate logo of the organizing charity.
As facilitators of this transformation process, participating companies gain for themselves an immeasurable amount of public goodwill. And because they are dealing with unrestricted donations from volunteers rather than investments from shareholders, they are essentially unaccountable for how they distribute the funds.
It is not only Komen that takes this opportunity to obscure its expenses. Just as Komen will give out only gross numbers from its athletic events, Revlon and Avon will give out only net numbers. But it appears that the Avon Breast Cancer Crusade spends more than a third of the funds it raises in its three-day events on advertising, event expenses, and overhead. The Crusade’s literature puts it this way: “The Avon 3-Days have delivered over $25 million to the breast cancer cause since 1998, representing a 60 percent return.” At Komen, one spokesperson told me that the foundation keeps race expenses for its one-day events below 25 percent of race revenues (not counting cash and in-kind donations from corporate sponsors); others refuse to confirm that and will say only that the foundation’s overall expenses amount to 9 percent of overall revenue. Revlon says its expenses for its one-day Run/Walks are about 11 percent of revenues (including the contributions of corporate sponsors).
Obviously, the three organizations’ expense figures are neither clear nor comparable—given the variety of ways revenues are accounted for and differences in the nature of the events—but all would seem substantial enough to pique participants’ curiosity. Oddly, they haven’t.
For participants what seems to count is not this kind of operational detail, but their own public involvement in the fight against the disease and their ability to make a show of their numbers. Likewise, they expect the media coverage of these events to convey the vast toll that breast cancer has taken on the lives of American women and the physical courage of those who have survived, rather than any urgent demands for new research priorities or stronger public policies. In this, the athletic events differ markedly from the political demonstrations of the breast cancer movement in the early 1990s, which the races have largely come to replace.
Ten years ago, women from community cancer projects gathered on the steps of state capitols, and, after 1991, the National Breast Cancer Coalition appeared before Congress to protest the lack of adequate funding for breast cancer research. The demonstrations drew attention to the sexual politics of the disease, proclaiming a link between the historic exclusion of women from all aspects of relevant public-policy making and the historic failure of the mainstream cancer establishment to stem the rising tide of breast cancer deaths.
Bringing down the death rate, the demonstrators of the early 1990s insisted, required more than just money (although that was clearly essential); it also depended upon the active participation of women themselves. Breast cancer advocacy groups run by and on behalf of women were expected to re-educate the policy makers. For instance, they wanted to get across the idea that research about treatments—research about the things that actually happen to patients—is as necessary as basic science research.
The early advocacy groups more than lived up to those expectations. Their lobbying efforts not only helped to raise annual federal spending on breast cancer research from $90 million a decade ago to $660 million in 1999; they also succeeded in involving women at almost every level of decision making that affects national breast cancer policy. To this day, the National Breast Cancer Coalition’s Project LEAD offers intensive four-day science courses for advocates, to enable them to participate on funding review boards where they represent the perspective of the breast cancer patient.
Project LEAD receives generous funding from Avon. But at the same time, advocacy activities have been thoroughly upstaged by the new corporate charities. What the public and the policy makers hear about breast cancer nowadays is not a political message. Applying for-profit public relations skills (and budgets) to nonprofit operations, the corporate charities have succeeded in branding breast cancer imagery.
The new logos and slogans everywhere promote products for sale. JCPenney, one of the Komen national sponsors, offers 25 percent-discount coupons to all Race for the Cure participants. Hallmark’s Cards for the Cure and Goldsmith Seeds’ Plant for the Cure, among many others, donate a percentage of the proceeds from sales of particular items or on a particular day to the Komen foundation. Even Charles Schwab weighed in at one point with a Commission for the Cure, contributing to Komen the commissions charged for online trades placed on Mother’s Day.
The emphasis on consuming as a way of raising money—shopping for the cure—trades on the most conventional expectations of women rather than on their capacity for social action. Nonetheless, the new breast cancer events are widely seen as upsetting conventions. In striving to achieve longer distances or faster times, or, in the case of survivors, just to demonstrate their recovery from punishing cancer treatments, the athletes who participate appear to be pushing the envelope. The same metaphors and sense of deliberate provocation attach to the enterprise as a whole, as though the collective energy and determination generated by the races have constituted an aggressive challenge to the status quo.
As it has turned out, however, these breast cancer charities have followed a quite traditional model in selecting beneficiaries for their largesse. Both the American Cancer Society, the oldest and still most powerful cancer charity, and the government’s National Cancer Institute spend their money largely on public education (urging people to take screening tests), support services (like driving patients to the hospital), screening procedures, and orthodox biomedical research; neither organization pays much attention to the possible links between cancer and man-made environmental toxins. The new philanthropies have had an opportunity to redress those biases and have been encouraged to do so by breast cancer activists. Alas, they have not.
Most egregiously, they have mirrored the cancer establishment’s traditional reluctance to get involved in paying for proper diagnosis and treatment for women who can’t afford them. Not until 1990 was federal funding finally made available, through the Centers for Disease Control and Prevention (CDC), to provide breast and cervical cancer screening for low-income women ineligible for Medicaid or Medicare. And despite significant growth in that program over the past ten years, its funding in 2000 (at $167 million) is still so low that it provides screening, by the government’s own estimate, for only 15 percent of eligible women.
Worse yet, in the original 1990 legislation, Congress allocated no funds at all to pay for the follow-up treatment of any women diagnosed with cancer through a CDC-sponsored screening program. These women, with the help of their health care providers, were expected to seek charity care on a catch-as-catch-can basis.
Study after study has demonstrated that this doesn’t work. Early detection may save middle-class lives, but the numbers are far different for women without adequate insurance. Yet Komen, Avon, and Revlon have followed the cancer establishment’s slow lead — in recent years funding mammography for low-income women, but still no further treatment.
Indeed, most breast cancer charities have paid generously for everything but surgery, radiation, and chemotherapy. They’ve covered biopsies, pain medication, transportation to and from treatment, child care—all very much needed services—but nothing that could be construed as breaking the American taboo on “socialized medicine.”
There have been exceptions to this rule, both large and small. Cancer Care, a national agency with annual revenues of almost $14 million in 1999, has had funding from the New York Community Trust since the mid-1980s to pay directly for the costs of cancer treatment for New Yorkers. In 1999 about 600 patients received direct financial support from Cancer Care.
At the other end of the spectrum, the Bridge Breast Center in Dallas operates with a staff of three and a total budget of $450,000, funded in part by a local affiliate of the Komen foundation. In 1999 Bridge managed to see 310 women with a suspicious breast lump and paid for the treatment of the 42 among them who were diagnosed with a malignancy.
To date, these programs remain exceptional, though if the government starts paying for cancer treatment, there are signs that the charities may follow suit. In 1999 a bill was introduced in Congress to spend money on treatment of uninsured women diagnosed with cervical or breast cancer; the following spring, the Avon Breast Cancer Crusade announced grants of $2.5 million for clinical treatment services for “medically underserved women,” including surgery, radiation, and chemotherapy.
In October the U.S. Senate voted unanimously to pass the Breast and Cervical Cancer Prevention and Treatment Act, and the bill was finally signed into law by President Clinton later that month. Two hundred and fifty million dollars has been budgeted for the program over the next five years—perhaps 15 to 20 percent of what’s needed to treat the 30,000 uninsured and underinsured women diagnosed each year. Maybe the new charities will then try to make up the difference.
But when it comes to cancer policy, they are not in the lead, and women racing for the cure would do well to reflect on what it takes to actually win.
Ellen Leopold is the author of A Darker Ribbon: Breast Cancer, Women, and Their Doctors in the Twentieth Century (Beacon Press, 1999) and a member of the Women’s Community Cancer Project. This article was reprinted with permission from the American Prospect (5 Broad Street, Boston, MA 02109). Copyright 2000. All rights reserved.