Women battle the odds—and win more funds to fight a killer

MARY NEMETH July 11 1994


Women battle the odds—and win more funds to fight a killer

MARY NEMETH July 11 1994



Women battle the odds—and win more funds to fight a killer


It had been a year since Pat Kelly was diagnosed with breast cancer. Then a 36-year-old mother of two and a research technologist living in Burlington, Ont., Kelly wanted to meet other women with the disease, to share information and experiences and to offer mutual support. There were other self-help groups, but none focusing exclusively on breast-cancer. And so, in 1988, Kelly and another breast-cancer survivor set up their own—an organization that quickly turned to political activism. As one of its first projects, Kelly recalls, the group began gathering material for a booklet. “We were working on breast self-examination,” she says. “And we went back to look at data in 1960—when one in 20 women faced a lifetime risk of getting breast cancer. In the 1980s, the numbers were one in 14. Now, it’s one in nine. I said, What the hell is this all about?’ And I starting calling the ministry of health.”

Breast-cancer survivor groups, like the one Kelly co-founded, are now springing up across the country. Some are primarily support groups; some spread the word about the latest treatments; some are increasingly political, taking on the medical establishment, demanding a role in research issues. It is a movement fuelled by feminism, by a trend towards self-help groups and consumer advocacy, and inspired by the effectiveness that AIDS activists have had in raising the profile of that disease. And in an era when health-care lobbyists of all kinds are demanding bigger chunks of shrinking public budgets, the breast-cancer survivors have been among the most successful. Largely because of their lobbying efforts, the federal government and the Canadian Cancer Society committed $30 million over five years to breastcancer research—and more funds are coming in from the corporate sector. That money has now been rolled into a National Breast Cancer Research Initiative dedicated to researching and disseminating information about the deadly disease.

The task is formidable. Scientists face a disease that sometimes kills, but almost always turns a patient’s life upside down—one that can challenge a woman’s concept of her own femininity, ravage her relationships and seep into her night-

mares years after treatment (page 46). Statistics—like most issues surrounding breast cancer—are controversial. Many experts argue that at least part of the increase in cases is due to better detection. But breast cancer is unquestionably widespread. About 17,000 new cases will be diagnosed this year in Canada—the second-highest rate in the world following the United States. And after decades of research, the disease continues to kill about one-third of all its victims.

Researchers are attacking the enemy on several fronts. Some are hunting for a gene that causes some breast cancers. Others are working on a vaccine approach that could prevent the disease from spreading. And there is research into suspected links between manmade chemicals and breast cancer, as well as into the possible preventive benefits of a low-fat diet (page 50). Research has also bred controversy. In March, it was revealed that Montreal physician Roger Poisson had falsified the medical records of some breast-cancer patients to make them eligible for studies. Now, controversy surrounds tamoxifen, a drug that is believed to prevent breast cancer.

The study at issue involves 16,000 healthy women—including 1,500 Canadians—who have a higher-than-normal risk of

developing breast cancer. While some physicians still argue that the benefits of tamoxifen far outweigh its risks, doctors at the Hamilton Regional Cancer Centre pulled out of the study in April. The reason: mounting evidence that the drug is associated with increased incidence of uterine cancer. “It’s a very complex drug,” concedes Kelly, who initially supported the tamoxifen trial but now opposes it. “If you could actually prevent breast cancer, that would be worthy of taking some risks. But not to the extent where you’re getting other cancers as a result.” There is an array of breast-cancer survivor groups across the country, some more militant than others. Ninon Bourque, the interim chairman of the fledgling Canadian Breast Cancer Network, insists that her organization’s role is “support,” not “advocacy,” and that “we’re not into doctor bashing or research bashing: we are interested in partnering.” The groups, however, do have several issues in common—in particular, a sense that the medical system has made too little progress in reducing breast-cancer mortality rates. Having won more research dollars, many now want more say in how that money is spent; they want more studies into environmental and diet issues. The groups are also critical of variations in treatment: one recent Ontario study found that the rate of lumpectomies (the removal of only part of the breast) as opposed to mastectomies (the removal of the whole breast) varied from 11 per cent of all breast-cancer surgeries in one region to 84 per cent in another.

The patients, of course, speak from experience. After an inconclusive mammogram, Kelly recalls, she went for a cytology aspirate—in which fluid is drawn from a lump in the breast with a needle—only to get a false negative result “The surgeon,” she says, “patted me on the head and said: ‘Don’t you worry your pretty little head. There’s nothing wrong.’ ”

Too many surgeons, Kelly argues, are too busy or too patronizing to provide patients with adequate information to make treatment decisions. Most of all, says Sharon Batt, a journalist and founder of the Breast Cancer Action Montreal advocacy group, women want more input. ‘The Canadian Cancer Society and the research organizations have basically owned the disease,” says Batt. “We’re saying that we’re the ones who should be at the centre, it’s our disease, we’re the ones who are living with it and we’re not going to be marginalized.”

In the past, relations were sometimes strained between advocacy groups on the one hand and medical and research institutions and the Canadian Cancer Society on the other. “I know that it was not good,” says Jackie Wassermann, a breast-cancer survivor and the Wmnipeg-based national volunteer co-ordinator of the cancer society’s emotional-support programs. But she—and many patient advocates as well—say relations are improving. Wassermann notes that the society has long offered support and counselling services, including a Reach to Recovery program in which volunteers visit 12,000 breast-cancer patients a year. “The cancer society has viable programs and so do the other groups,” she says. “I’m not interested in being territorial. What suits some people may not suit others.”

At the same time, many cancer professionals support patient involvement in research, treatment and support decisions. And increasingly, patients with all kinds of cancer are represented on commit-

tees at cancer treatment centres. “There is resistance,” says Ross Gray, a Toronto psychologist and a supporter of patient involvement. “Some physicians say they have enough trouble getting their jobs done without answering a million more questions from people who expect too much from

them. ” But Gray says that the political climate has shifted, and “even people who are really against patients having much say are keeping a low profile.”

Even more significant, perhaps, is the increase in funding for breast cancer. The cancer society and its scientific affiliate, the National Cancer Institute of Canada (NCIC), traditionally resisted targeting funding to any particular cancer site because they wanted the flexibility to determine research priorities. And the NCIC devoted most of its funds to basic cellular research with potential crossover benefits for all kinds of cancer. A recent parliamentary committee could not determine exactly how much the institute spends each year specifically on breast cancer, but estimated that it accounted for $1.2 million of the $25.5 million granted to individual researchers.

In 1986, unable to persuade the cancer society to change its policy on targeting funding, a group of Toronto women established the Canadian Breast Cancer Foundation. Since

then, they have raised more than $1 million for research and education. And they, as well as the advocacy groups, helped change public policy. The cancer society agreed about four years ago to start accepting funds earmarked for a specific cancer site, although officials say they were leaning in that direction anyway. Then, in 1992, the federal government committed $20 million to breast-cancer research over five years, and the cancer society put up another $10 million. Corporate donors are expected to provide another $15 million for the National Breast Cancer Research Initiative. Although the cancer society and the NCIC say they should get some credit, all sides agree that survivor groups were vital in bringing the initiative together. Louise Liao, the initiative’s research program director, says they “deserve a tremendous amount of credit because they were able to capture the attention of the federal government and key opinion leaders.”

There are some cancer specialists, however, who express concerns in principle about advocacy groups determining the allocation of funding. “Some of those concerns are valid,” argues Dr. David Beatty, the NCIC’s executive director. “I don’t think we want a research agenda that is totally set by those who can get the most publicity on the front page of a newspaper.” But Beatty says that “the idea of advocacy and support groups playing a role is something that’s been increasing in recent years. It’s a reality of the world we live in and probably a healthy reality.”

The rise of the breast-cancer advocacy movement, in fact, is partly a demographic phenomenon. “A lot of it,” says Montreal’s Batt, “has to do with the generation of women

that are getting breast cancer—baby boomers who are used to being outspoken.” One of the founders of a small feminist magazine in the 1970s and later an editor at a consumer protection magazine, Batt wrote an article in the Montreal Gazette in 1989, pointing out that 10 times as many people—4,381 in 1987—were dying of breast cancer as of AIDS. And she compared the activism of AIDS patients with what she called the silence and powerlessness of women with breast cancer—urging them to “dare to be outrageous.” The article was accompanied by a photograph of Batt during

chemotherapy, with no hair on her head—“a deliberate effort to show something of what a woman goes through,” she says.

Later, Batt heard about organizations in the United States. In 1991, American women had organized a national coalition and were lobbying for massive new funding, a goal they achieved when—uniquely—the U.S. Congress voted in 1992 to devote more than $250 million of the defence department’s budget to breast-cancer research. Meanwhile, Batt had gone to visit an advocacy group in Vermont. And in the fall of 1991, she and other women decided to form a group of their own. ‘The main goal,” says Batt, “was just getting women involved in the process of decision-making.”

At about the same time, the parliamentary committee on breast cancer began meeting in Ottawa. It was a significant event for the breast-cancer movement, in part because, when survivors showed up to testify, they found out about each other. As well, in its final report, “Unanswered Questions,” the committee raised many of the issues put forward by survivors, recommending, for exam-

ple, that there be more research into environmental issues.

Another of the committee’s recommendations led to a groundbreaking forum in Montreal last fall that brought together about 150 breast-cancer survivors with some 500 researchers, physicians, fundraisers and other professionals. Mary Drover, 44, now the vice-chairman of an advocacy group in Regina, recalls initially encountering “a bit of reluctance” among the scientists to patients assessing research proposals. But the professionals listened. And Drover realized that

one of them—a professor of pathology—was studying breast-cancer cells to see why they spread to other parts of the body, something that had already happened in her case. “He’s studying cells and slides and statistics,” says Drover. “I was the first person he’d met that he could put a face on his research. And he understood why I’d want to know the results.”

Since that conference, the National Breast Cancer Research Initiative has identified three areas where it would like to see more research: investigating alternative therapies like vitamin and herbal supplements, finding ways to communicate information to newly diagnosed women, and better translating academic research to primary-care physicians and their patients. The Canadian Breast Cancer Network’s Bourque will sit on the initiative’s management committee. Meanwhile, Health Canada has been helping the network get organized: its founding conference is expected in the fall. That network is certain to perpetuate, even expand, the role breastcancer survivors have won in the administration of their disease. In the process, they are putting power into the hands of women besieged by a debilitating illness. □