To Dance with the Devil: The New War on Breast Cancer

To Dance with the Devil: The New War on Breast Cancer

by Karen Stabiner


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Product Details

ISBN-13: 9780385312844
Publisher: Bantam Doubleday Dell Publishing Group
Publication date: 05/01/1997
Pages: 518
Product dimensions: 6.51(w) x 9.58(h) x 1.82(d)

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October 1993: Washington, D.C.

It took Fran Visco two years to get into the White House. The first time she tried, in 1991, she got only as far as a guarded, locked gate where she loaded boxes containing 140,000 letters onto a conveyor belt. As the boxes were carried away she joked to her friends that they would probably ride straight through, out the back door and into an incinerator. President Bush would never see them.

In fact, no one ever acknowledged that the letters had arrived. She went home to Philadelphia to start over.

On October 18, 1993, she stood in a small room just off the East Room, talking with Health and Human Services Secretary Donna Shalala and Dr. Susan Love, director of the UCLA Breast Center and cofounder of the National Breast Cancer Coalition (NBCC), the two-and-a-half-year-old advocacy group that had twice waged a campaign for a national strategy against breast cancer. They were waiting for President Clinton and the First Lady to arrive, to accept Visco's latest offering. The boxes were piled in a lopsided pyramid at the back of a small stage in the East Room: Petitions that contained 2.6 million signatures, representing the 1.6 million women in the United States who knew they had breast cancer, and the one million who already had the disease but had not yet been diagnosed.

Visco, a forty-five-year-old corporate lawyer, was the president of the National Breast Cancer Coalition. Since May 1991 the Coalition had been fighting for research dollars and a strategy on how best to spend them. In fifteen minutes she would be seated onstage in front of all those boxes, listening to President Clinton outline a planthat was as much Fran's as anyone's.

She and Love had set out to dismantle the civilized conspiracy that had hobbled medicine's progress against breast cancer since the mid-1800s, when American and British surgeons began to define a therapeutic approach. Before that, much of what passed for treatment was based on anecdote and superstition; afterward, on often misguided heroics, as though to compensate for the clumsiness of the past.

It was not a conscious plot; not even willful disregard. It was somehow worse: layer upon layer of silence and neglect, of therapies whose use far outlasted their efficacy, and research budgets that focused almost exclusively on men's diseases. The three most potent threats to a woman's health--heart disease, breast cancer, and osteoporosis--went virtually ignored. There was not enough money to keep women from getting sick, only a desperate scramble to save them once they did.

It did not work. One third of all women who developed breast cancer eventually died of it. That had been true for fifty years--but the Coalition was determined to buy a better future. The National Institutes of Health (NIH), which conducted most of the government's health care research, had to Visco's mind embarrassed itself with paltry breast cancer budgets--$90 million in fiscal 1990, $100 million the next year, and $155 million in fiscal 1992. The Coalition had lobbied until Congress found an additional $210 million for the fiscal 1993 budget, a windfall from the peacetime Department of Defense, which had been led into the fray, kicking and screaming, by Visco and a handful of sympathetic politicians who insisted that breast cancer was a perfectly reasonable topic for army research.

Between the army's two-year program and the NIH, which had managed an $80 million increase in its own breast cancer budget for fiscal 1993, the government had allocated over $400 million in research dollars, almost triple the 1992 budget--enough to jump-start a stalled research effort, the result of too little money and too little imagination. Better still, Visco's proprietary role in the army program had won her the chance to change the way that money was spent. The government's delicate label for patients was "consumers." Fran Visco would be the first consumer to actively participate in the grant review process, which meant that she could help to steer the money away from endless treatment regimens and into more promising work on prevention or cure. The Coalition had won not just money, but authority. Patients had their foot firmly inside a door that had always been closed to them.

The East Room reception was the crowning event of National Breast Cancer Awareness Month, and Visco had organized it down to the last detail. Ronald Perelman, the billionaire owner of the Revlon Group and one of the Coalition's financial angels, had underwritten part of the petition drive, but as usual the effort had depended on volunteer labor and donated supplies, and Visco was determined to acknowledge that contribution. She did not want celebrities like Revlon models Lauren Hutton and Veronica Webb onstage, or even in the front row of the audience, because they would distract the media. She insisted that many of the seats in the East Room be awarded to "just folks" who had collected signatures. If the Coalition was to grow and sustain its effort, she needed people, lots of them, all around the country. Rewarding the volunteers was the best way to ensure that they went home and got back to work.

She knew what she wanted President Clinton to say to them. More than anything, Visco wanted him to refer to breast cancer as an epidemic. An epidemic required a solution, however long that took. If he started using the word it would be easier to get funding next year.

She knew what the resistance was. Visco had debated the linguistic point on countless radio talk shows with scientists who preferred the formal definition of the term. Breast cancer was not a true epidemic like AIDS. It had not exploded out of nowhere, nor did it spread from one person to another, nor was there as dramatic a rise in incidence. Epidemic was a literal distinction, they reminded her, not an emotional state.

Visco was always quick to reply that there was a second definition of epidemic--an ongoing, inexplicable increase in incidence--that certainly applied to breast cancer.

The more she had to explain it the angrier she got. Surely the numbers were convincing without her help: 182,000 women got breast cancer every year and 46,000 died. Between 1990 and 2000 nearly a half million women would die of the disease, the most commonly diagnosed cancer in women and the second most fatal after lung cancer. Among African-American women it was the most lethal cancer because it often was detected at a later stage. A woman's lifetime risk of developing breast cancer--the chance that she would develop the disease if she lived to be eighty-five--was one in eight, up from one in twenty when Visco was born.

Worse yet, there seemed to be nothing a woman could do to improve her odds. Cigarettes caused lung disease, and that simple causal link gave a woman an obvious tool: the best way to avoid lung cancer was to stop smoking or not start. Breast cancer had so far resisted medicine's best hunches about prevention. It claimed vegetarians, women on low-fat diets, women who were fat, women who were thin and fit--anyone.

Other ailments presented a greater statistical danger. A woman's lifetime risk of developing heart disease was one in two; adult-onset diabetes or alcoholism, one in three; a stroke, one in five; a hip fracture, one in seven. But rational fact was no consolation. Women reported that they were more frightened of breast cancer than of heart disease, the most serious health threat they faced, in great part because there was nothing they could do to protect themselves. Life was roulette when it came to breast cancer. As far as Visco was concerned, the government had to make up for lost time and find some answers--if not a cure, which was what she dreamed of, then at least a prevention strategy women could depend on.

Medicine could not even fight breast cancer to a draw. If one in eight did not qualify as an inexplicable increase, what did?

Visco tried to convince the White House speechwriters of her position, but a few days before the reception she got an apologetic call from one of them. Despite her arduous lobbying, the President probably would not refer to breast cancer as an epidemic. There were, the speechwriter said, "political implications" to consider.

It was Visco's one tactical defeat, but she decided to yield rather than alienate the scientific community even further. The people at the NIH were already irritated because the Defense Department controlled $210 million in research money that they believed properly should have gone to the NIH, and cranky about the upstart lawyer who fancied herself a breast cancer expert. Researchers were not used to intruders from the outside world, whether they were army officers or advocates. The NIH had functioned since 1887 in collegial isolation, set apart both by geography--a sprawling 300-acre campus in Bethesda, Maryland--and by the impenetrable nature of its research, which attempted to understand the fundamental rules of the human body, how it stayed healthy and why it fell ill. The National Cancer Institute (NCI), created by a special act of Congress in 1937 and the largest division of the NIH, enjoyed even greater autonomy thanks to a "bypass budget" that circumvented Congress and was signed directly by the President.

These were the bastions of basic research. The native dialect was intimidating, spoken only by an elite corps who believed that answers about specific diseases came not from studying those diseases but by amassing a body of general knowledge. They considered earmarked research, in which scientists spent targeted money on a particular disease, to be a lesser challenge and a potentially dangerous distraction.

Basic researchers insisted that the key to a particular disease could come from anywhere--from the study of how yeast cells behaved, from research into a virus implicated in other ailments. Limiting the scope of a scientist's work was like putting blinders on him, and critics of the Defense Department's earmarked program worried that it might by definition exclude research that would lead to an answer.

As far as Visco was concerned, basic research was nothing more than a polite euphemism for benign neglect. The scientists feared that special interests would dismantle the nation's research effort, steal money from basic research to fund their own agenda. Visco felt the NIH was out of touch with reality, engaged in a grand intellectual exercise while people who needed practical answers suffered and died. The NIH was part of the government, supported by taxpayers' dollars. It was time for scientists to better serve the people who paid them.

She fully intended to live up to their nightmare scenario, to demand even more money and insist on a voice on how it was spent. The NIH had every reason to be upset by the Defense Department program. It was Visco's pet project, a model for an eventual invasion of the inaccessible NIH. The days when researchers and politicians made decisions about women's health--or simply opted to ignore it--were over.

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