What is breast cancer advocacy?
I’m going to start with some definitions—what do breast cancer advocates do? There are a number of distinct approaches to breast cancer advocacy and I want to position myself among them, and advocate for my favorite model.

One idea is that advocacy means women, in our role as patients, should have a say in our own treatments. Now, I believe cancer treatments are most likely to benefit the woman when she and her doctor come to a mutual agreement that combines the physician’s expertise with the women’s personal values. But that sort of one-on–one negotiation is not what I mean when I talk about advocacy.

In North America, cancer organizations fought to give cancer patients a say in their treatment in the 1980s. In this decade, something much more profound took place. For the first time in history, women mobilized as a political force. We brought breast cancer out of the closet - and out of the physician’s office - and put the disease on the PUBLIC policy agenda.

But that still doesn’t end the confusion. Even after almost ten years of activism, most people still think what advocates do is lobby for more research money for breast cancer. And that has been one approach to advocacy. The tangible expression of this philosophy is found in the ever-popular Race for the Cure, the runs and walks designed to raise money for treatment research.

To me, the pulse of advocacy is to provide a reality check. What is the view from the ground? Whether we are women living with breast cancer, or citizens concerned about the disease, our task is to see our own interests clearly, to speak about breast cancer in a voice rooted in lived experiences and in our own system of values. We need to be alert to the turf wars and vested interests in the system, and we need to question. Who is making the decisions, and why? And are they really in the best interest of patients?

This business of the reality check strains relations between advocates and researchers. As advocates began to take part in meetings with researchers, the typical discourse has been a classic case of miscommunication. We were saying “Reality check” and researchers kept hearing “really big cheque”. But, before advocacy, that is what the public did.

Dr. Susan Love captured the transition when she described the mandate of the NBCC in the U.S. She said, We’re not the women’s auxiliary of the American Cancer Society - we don’t just say, “here’s some money boys - come back when you have the answer.” Today’s advocates want a say in decisions about what research gets done, and what policies are developed.

Backlash
Now this view of advocacy has generated some backlash among scientists.

The backlash came home to me a month ago at a breast cancer research conference in Toronto. The featured speaker at the banquet finale was the American researcher, Dr. Bernard Fisher. Dr. Fisher is a senior, internationally known member of the breast cancer research community and many of you will be familiar with highlights of his career, as head of a large, federally-funded research program of clinical trials that has evaluated the effectiveness of common breast cancer treatments.

Dr. Fisher is an entertaining speaker, and he spoke that evening with considerable charm about his many decades heading this US program in breast cancer research. Towards the end of his talk, I was astonished to hear him name me, and my book, Patient No More: the Politics of Breast Cancer, as one of four books that had deeply hurt him and his family.

He went on to depict me, and a number of other advocate-writers, and the National Breast Cancer Coalition - the national US advocacy umbrella group - as part of an “anti-science movement”. He even showed slides, listing the books that offended him, and parts of a letter from the NBCC which said breast cancer treatments had not really advanced beyond the slash, burn and poison of 30 years ago.

At the time this event took place, I had drafted an abstract for this talk, in which I lamented the failure of the advocacy movement to live up to its promise. It seemed to me that, after exciting beginnings early in the decade, breast cancer advocacy had foundered. I planned to talk about the need for renewal. But after being denounced from the pulpit by a high priest of breast cancer research, I had to rethink. If breast cancer advocates have spooked someone as powerful as Bernard Fisher to the point where he feels moved to tongue lash us and our work in his after-dinner talks - well, maybe we’ve had an impact after all.

Now, I’m not saying our role as breast cancer advocates is to oppose scientific research or to antagonize scientists. I do believe we have a right - and an obligation - to question the directions science is taking and the way science is applied: in the light of our own experience; in the light of our values and our political vision of the kind of society we want to live in; and in the light of common sense.

These actions seem to me quite moderate and reasonable, and consistent with the way democracies are supposed work. So when a prominent researcher describes advocates as “anti-science”, we need to ask, “what’s going on?”

The answer could take us down several paths. I’ve chosen today to explore pharmaceutical drug research in breast cancer. In the wealthy industrialized countries, drug development now dominates cancer research and policy to an unprecedented degree. We need to keep a hawk eye on this development, and its special pitfalls for advocates.

Our demand for a paradigm shift
Let me first return to the question of advocacy, and what drove many of us who were diagnosed with this disease to form a movement for change.

I began meeting and talking to other women with breast cancer a year or so after my diagnosis, in 1988, and have remained active in grass roots groups to the present day. From the beginning, I was struck by the fact that other women had many of the same questions I did. We noticed a disconnect between our reality and what we heard from researchers and cancer agencies, and in media reports. The mythology about breast cancer was all high-tech medicine, breakthroughs, cures, genetic testing, and early detection as THE solution to the disease.

As women who had gone through these treatments, we had a different perception. We were shocked at how brutal the treatments were, even as they offered no guarantee of a cure. We worried about side-effects, like lymphedema, the long-term toxicity of chemotherapy and radiation damage. We were dismayed at how common damaging side effects seemed to be and at the scarcity of research on how to alleviate them. We searched the forbidden literature on complementary or alternative medicines for less toxic treatments.

I was treated in Montreal, a city with a large oncology research community. Like the other women I came to know there, I had “state-of-the-art” treatments; yet we felt our emotional and spiritual needs as patients had been ignored. Our physicians were technically competent but they had no idea how to talk to us.

And prevention! One of the first question women diagnosed with breast cancer ask, is “Why did I get this disease?” When women began to compare notes, and to research the scientific literature, we realized research into causes of breast cancer got short shrift, compared to the research on treatment. Only 5 to 10 per cent of cases have a hereditary component; yet the search for genetic tests for breast cancer was fast tracked in the early 90s, leading to the discovery of the so-called breast cancer genes. These tests could identify women at high risk, but the only way for those women to reduce their risk was to have both healthy breasts removed.

Now there’s a thematic thread running through all these issues. If enough people pull that thread, they could crack the very foundations of modern medicine. Many breast cancer advocates quite consciously question the biomedical model that underpins western medicine - the ideology that equates the human body with a machine. We question as well the faith in technology that draws western medical researchers to ever-more extreme experimentation in the name of “progress”.

Rachel Carson, in her book Silent Spring, used the analogy of the superhighway, versus the road less travelled. She was writing about the scientific search for ways to eradicate insects in the 1950s, but she could just as well have been writing about methods for eradicating cancer today.

I believe this is why breast cancer advocacy threatens many scientists - and governments as well. Advocates have proposed not only that breast cancer research be reorganized around a different scientific model, we have demanded structures that are open to public scrutiny and debate. We want processes that allow for public input and a place at the table for advocates.

Drug companies: Speed Demons on the Science Superhighway
Breast cancer treatment drugs illustrate some obvious problems with the modern, western view of medical progress in breast cancer.

Only twenty years ago, surgery was the firstline treatment for breast cancer in industrialized countries. Drugs, when they were used at all, were an adjunct, to try to prevent spread of the disease in women at high risk of metastasis.

Today, the picture has a different focus. Surgery is less mutilating but its importance in the therapeutic picture has been downgraded - it’s considered a minor part of treatment. Drugs are the main action. They still aren’t all that effective. But, we’re told, they will be. New kinds of drugs are held out as our hope for effective treatment and eventual cure of the disease.

Maybe so. But at what cost?

Tamoxifen
I’ll talk first about tamoxifen, which is not a new drug - it’s been used for twenty years. It’s currently the most widely used breast cancer drug in the world.

About three weeks ago, an article appeared in the Montreal Gazette comparing the price of tamoxifen in Canada and the U.S. The story told of five Vermont women with breast cancer who crossed the border to buy tamoxifen in Quebec. In the U.S., they were paying (US) $156.42 for a month’s supply of the drug. In Canada, they paid (US) $12.80 - less than one-tenth the amount back home. That’s a price difference of 1,122%.

Vermont congressman Bernie Sanders, organized the delegation. Sanders wants to see the US adopt comprehensive public health insurance - which Canada now has and the U.S. doesn’t. His point was that drug prices are lower in Canada than in the U.S. because of our public system of health care. He’s right. When Canada’s health care system was in its prime, we created a system that allowed generic drug companies to make inexpensive copies of certain drugs. This explains why tamoxifen can be purchased in Canada for so much less than in the US. Unfortunately for people who need medications, the multinational drug companies successfully fought that system, so you would not see the same disparity between U.S. and Canadian prices in newer drugs.

One interesting point about the story, though, was that the Canadian pharmacist was quite happy with his mark-up - 50% over the wholesale price. He thought that was fair - as far as he was concerned, he was selling at a just price, not a bargain price.

Then Came Taxol
Taxol is a newer breast cancer drug and it’s much more expensive than tamoxifen. The NCI in the U.S. paid the research and development costs of taxol but when the drug was approved in 1992, the NCI gave Bristol-Myers Squibb the exclusive right to manufacture and sell the drug. The company proceeded to price the drug at $4.87 per milligram, more than 20 times the cost of production.

The NCI, like government cancer agencies in Canada and elsewhere, sees no conflict between using taxpayer’s money for drug development, and then allowing drug companies to sell those drugs at what the market will bear. This is part of the current ideology in which governments view industry as partners.

In Dr. Susan Love’s Breast Book, she evaluates Taxol. She says taxol is not a miracle drug, though the media hyped it as if it was. It works well in some women for up to 18 months, but can also have serious side-effects, notably neurological damage to hands and feet.

When taxol was still relatively new, breast cancer advocates in the Netherlands and Australia successfully lobbied their governments to provide taxol as a second-line treatment under public health care plans. So did an advocacy group in Ontario.

Taxol got a boost in 1998 when a clinical trial showed that taxol administered after a cycle of the conventional chemotherapy drugs Adriamycin and Cyclophosphamide significantly reduced recurrence and death rates. As a result, Taxol is now being offered in the US as a first-line breast cancer treatment, in combination with the two older drugs.

A new Canadian group called Breast Cancer Advocacy Canada has just initiated a lobby to have the AC-taxol combination treatment made available as a standard treatment option for all high-risk, node-positive women in Canada. At present, Canadian oncologists can’t offer this treatment to their patients under our medical insurance plans because of its high cost.

Taxol lobbies disturb me, not because I want to deny any useful treatment to women, but because I believe universal access should be an absolute principle of health care. And pressuring our governments to pay for drugs at inflated prices will only push our more democratic system into an American-style model. Why shouldn’t drug companies be required to price their drugs at affordable levels - especially if they were developed at public expense, as taxol was?

We’re now layering one treatment on another, because none of them do very well on their own: We’ve layered taxol on conventional chemo, which is layered on surgery, and radiation, which are layered in turn on mammography. These are all expensive interventions. When do we hit the wall of unaffordability?

The truth is, we already have, and we’re nowhere near curing breast cancer.

At the World Conference on Breast Cancer two years ago, Gail Tishera, the minister of health from Guyana said, “We, in the developing countries, cannot afford the treatments that have been found.” Women in her country, she said, needed appropriate and AFFORDABLE treatments.

Herceptin
Well, since Gail Tishera made that plea, the breast cancer treatment making waves in the industrialized west is Herceptin. The FDA approved this new drug last October. For a subgroup of women with advanced disease, Herceptin is effective at alleviating symptoms and probably extends life. Canada has just approved the Herceptin test and will soon consider approving the drug.

The problem is, Herceptin costs $8,000 Canadian a month - in US funds, that’s $5,333.

Researchers tell us Herceptin is just the beginning of the new therapies that exploit recent genetic discoveries. It makes you wonder.... Who are these drugs being developed for? Personal friends of Bill Gates?

Again, to put this issue in a world perspective, I recall the physician from Cameroon who talked at an advocacy conference in Brussels about the plight of women with breast cancer in her country. A typical Cameroon woman with a breast lump, she said, can’t even afford a biopsy to determine whether she actually HAS breast cancer. Because a breast biopsy in Cameroon costs $10.

Roads for Advocates
At the outset, I mentioned the different visions of breast cancer advocacy. With the move to new, more expensive drug therapies, a basic division within the movement has become glaringly obvious. While some of us are pushing for fundamental change, other groups focus on promoting high-tech treatments, and insurance coverage for these treatments - whatever the price.

If we recall Rachel Carson’s metaphor of the superhighway and the road less travelled, they are saying, we need to go even faster down the superhighway. This vision is in sharp contradiction to the paradigm shift others among us have promoted.

Accentuating this split in advocacy groups is the troubling trend towards industry funding of “health consumer groups”. These industry-sponsored organizations are proliferating in the US, Canada and Europe. In Canada, during the past year, the drug company Merck Frosst funded meetings to set up a “National Consumer Health Network.”

The environmental movement calls industry-funded groups that present themselves as green lobby groups “Astro-turf groups”. What should we call their counterparts in the health field? I suggest we call them “placebo health groups.”

I’m not saying that all breast cancer groups that take money from industry are actively working as industry mouthpieces. That’s not the case. Community groups are typically small, cash-strapped organizations with large ambitions. There’s a lot of confusion in the community about how to handle drug company offers. But we need to recognize that pharmaceutical companies ARE actively wooing advocacy groups as partners and they are doing so because breast cancer advocacy can help their bottom line.

Last fall, the San Francisco-based group Breast Cancer Action became the first breast cancer group to draft a policy on corporate funding. BCA decided not to accept funding from six categories of corporations, and pharmaceutical companies led the list. A similar initiative, which arose from concerns in the women’s health community in Canada, is a booklet by Anne Rochon Ford called A Different Prescription: considerations for women’s health groups contemplating funding from the pharmaceutical industry. I urge any of you who belong to breast cancer advocacy groups to take a look at these two documents.

Conclusion
To conclude, I want to address the accusation that advocates who question the scientific agenda in breast cancer are “anti-science”.

The very foundation of science is to question, to debate, and to remain open to ideas from different perspectives. If anything, breast cancer advocates have pushed researchers to be MORE open and rigorous.

But we do have qualms about medicine’s love affair with the lab. If doctors want to keep their patients’ trust, they can’t permit science and technology to override the caring, ethical side of medicine.

Our un-ease with the machine model in bioscience is well-grounded, not only in our personal experiences, but in the analyses of distinguished scientists and philosophers.

It’s easy to cheer science along the superhighway. It’s far more difficult to promote fundamental change. But I believe we must take that path. If we work together, following a global, ecological, socially just vision, we can lower breast cancer incidence. We can find humane, effective treatments and make them universally available to women in all countries.

The future of women with breast cancer depends on the choice we make.