breast cancer statistics are staggering. The disease kills one American woman every 12 minutes. Every three minutes another woman is diagnosed. Of all the women who develop the lethal disease, less than one-third have any identifiable risk factor. And with baby boomers approaching menopause, the volume of breast cancer cases is only going to increase.
In her new book, "To Dance with the Devil: The New War On Breast Cancer" (Delacorte), journalist Karen Stabiner trailed breast surgeon Susan Love and seven women under her care at the Revlon/UCLA Breast Center for over a year. While writing the book, BRCA1, the "breast cancer gene," was discovered, raising hopes that a cure might one day be available for the next generation of women. But what Stabiner learned, to her shock, was that as researchers came closer to finding the gene, they shared less and less information.
At one point, she reports in the book, one of the two teams on the trail tried to tie up DNA supplies being used for research purposes and refused to publish the gene sequence it had discovered, even though its research was partly funded by the government. "It's appalling that researchers put their personal agenda above the greater good," Stabiner said last week at a book signing in Berkeley, Calif. She urged her audience to "make some noise" about the disease that "takes a rather offensive delight in striking people."
Stabiner has written for the New Yorker and the New York Times, among other publications. Her previous book, "Inventing Desire," took a hard look at the American advertising industry. Salon talked with Stabiner in Berkeley.
Part of the subtitle of your book reads: "Politics, Power, and People." How did breast cancer become politicized?
Through a series of coincidences. In the early '90s the more focused search for a breast cancer gene provided the medical and research community with a scientific opportunity. At the same time, there were a bunch of baby boomers, coming from a tradition of social action, who mobilized and fought for funding. Then, in 1992, money poured in -- in the form of a $210 million Army research fund. And business people -- Revlon Chairman Ronald Perelman and designer Georgio Armani, for example -- realized that this was an issue that people cared deeply about and donated money to the cause. The movement went from neutral to fourth gear. The trick now is to keep it there.
You're saying there is a lot of catching up to do because breast cancer was largely ignored before 1990. Was that because it was a "woman's disease"?
Yes. All women's health issues were ignored before the '90s. It's mostly men that do the research so they were researching heart disease in men. That finally changed in 1992, when the federal government funded a $625 million program to study osteoporosis, heart disease and breast cancer in women.
The patients that you followed in your book probably received the best medical treatment available. Still, one of them died and others were left to choose between many different -- and not always successful -- treatments. And they were middle-class women. What kind of treatment do disadvantaged women receive?
The point of choosing these women -- and they were all educated and wealthy enough to have access to this great treatment center at UCLA -- was to show that even their options were not that great. Women without much money or women who live in rural areas have much fewer options. Sometimes rural women choose to have a mastectomy rather than radiation or a lumpectomy because the nearest facility might be 70 miles away and they don't have the time or the money to go to the hospital every day to have 10-second radiation treatments. Some doctors are trying to do something about it. Larry Bassett, the head of radiology at UCLA, has outfitted a motor coach that goes out into the less wealthy parts of L.A. and does mammograms.
Does breast cancer strike indiscriminately, or are minority and poor women affected more?
No. It strikes upper-middle-class white women more. As Mary-Claire King (one of the researchers who discovered the breast cancer gene) said, this is one disease that is a function of a better life. It is also particular to a modern woman's lifestyle. When women delay childbearing -- which many women do so they can first establish a career -- they have more years where they are producing estrogen without getting to the point of making milk. But breast cancer mortality rates are higher among black women because the cancer usually isn't caught until late.
Dr. Susan Love, a main figure in your book, has been attacked for saying that monthly self exams and mammograms for women under 50 are limited in value. What is the controversy about?
What offends her about monthly self exams is that it creates this "search and destroy" scenario. She just wants women to be familiar with themselves. She doesn't want to breed fear. In terms of mammography, yes, she is taking a hard line. Only one-third of women over 50 are receiving them as opposed to 70 percent of women under 50. There are a lot of people who are doing it who shouldn't, and a lot of people not doing it who should. She also blames the overuse of radiation for many breast cancer cases.
With the discovery of BRCA1 and BRCA2, is there concern that women known to have these genetic mutations will be denied health insurance?
The question really is, who will have access to this information? With computers, there's no telling who has access to what, legally or illegally. On a more insidious level, consider a person who has the gene who is applying for a job and is up against two other people. She might be more qualified but an employer could decide not to hire her because of her genes. The employer might think, "This person is going to cost me a lot in the future." Dr. Love recommends that women already in treatment with her be tested for the gene, but she says that their daughters should not be tested.
Is breast cancer still underfunded compared to other life-threatening diseases?
Not at the moment. This year $550 million government dollars are allocated toward breast cancer research. How safe is the money? Not that safe. Every year it is a battle to keep the disease funded.