Who is health care for?
The answer seems obvious: everyone. It's a certainty based on the powerful utilitarian idea that public spending should provide the greatest good for the greatest number of people.
So what's gone wrong with breast cancer treatment? According to the guidelines issued last month by the Canadian Task Force on Preventive Health Care, our extensive use of screening techniques provides only small benefits at a great cost.
The guidelines' authors argue that more women have been harmed than helped by a public-health policy that has encouraged all women to see themselves as potential victims, even though the high-risk group is substantially smaller in number.
Critics dismiss the guidelines by pointing to the examples of women whose lives have been saved by mass screening campaigns.
The heated debate around cancer treatment has provoked a larger question: Should we be crafting policy and spending money on the basis of exceptionalism? But how do we begin to answer that question when there's no public consensus on the exact point where the general good is no longer served by the benefits to a few?
"There's a perverse lack of calibration between science and policy," says Ross Upshur, Canada Research Chair in Primary Care Research at the University of Toronto. "And this rapidly turns into a classic conflict between the universal and the particular, because there's always an exception to the rule, the patient whose tumor was found through screening."
Exceptionalism is at the root of many public-policy issues where emotion, self-interest and personal experience conflict with the more dispassionate, evidence-based approach of science.
And with good reason: The individual story changes everything in how we relate to a prickly policy issue, whether it's hunger in Africa made human through a famine-ravaged baby on a TV fundraiser, or the survivors' testimony that has been marshalled to criticize the task-force report.
"If you put a face on a death, the argument for the other side is lost," says McGill epidemiologist Abby Lippman.
Compelling exceptions are hard to counteract, especially for political leaders who can only look cruel by preferring abstract policy about death rates over individuals who share stories of pain and survival.
Those warring values were put to the test last year with the widely publicized campaign for funding of the controversial liberation therapy for multiple sclerosis. "The scientific evidence has been very weak to date," says Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta. "If we made the science resource allocation the way we usually do, we'd have basic research first, try to figure out a mode of action and slowly move it into the clinical stage. But it's the people with the disease who are driving the issue. And when the demand is so huge, there's an impetus to take action."
Last week, federal Health Minister Leona Aglukkaq announced plans for clinical trials of the treatment, reversing the government's previous policy.
"The science is very thin," says University of Manitoba bioethicist Arthur Schafer, looking for a way to explain this change of heart. "But the drug therapies we have are very oppressive, and you're dealing with people who are desperate. So in the end, why not try it?"
When used as a policy tool, exceptionalism is understandable and even defensible. Israel trades 1,027 Palestinian prisoners for a single soldier held hostage by Hamas. The critics of that asymmetric deal take a position that is proudly detached: It's wrong because it rewards hostage-takers, at the likely cost of future retaliations toward Israel.
But the payoff from the return of that single Israeli soldier goes well beyond the individual – other Israelis see themselves reflected in him and his suffering, and take collective pride in the protective patriotism that sees his life as so valuable. That compassionate sense of unity can be leveraged by politicians who recognize the overriding power of emotion, even when it seems irrational and potentially dangerous.
Likewise in Canada, a government that talks tough on criminals when crime rates are falling prefers the anecdotal concerns of its supporters to the collective power of statistics. Decision-makers who won't let gay men make blood donations know the risk of spreading HIV is infinitesimal, but balance their bad science against the possibility of undermining public faith in the blood supply. Researchers tell governments that in-car headsets can be just as dangerously distracting as cellphones. Yet only the phones are banned, because the argument against a hand-held device is easier for the public to accept – public policy, much more than science, has to pass the popularity test.
The tensions in the breast cancer issue are even more divisive, for the paradoxical reason that the advocates for intensive mass monitoring of the population don't accept that they represent an exceptional position. The treatment of breast cancer, like prostate cancer, like colorectal cancer, has been framed in general and universal human terms: If everyone should be tested at some point, even the non-symptomatic, isn't that what preventive public health is all about?
The scientists on the task force challenge this belief simply by pointing to their seemingly overwhelming statistics: Screening 2,100 women aged 40 to 49 every two or three years for 11 years saves only one life. On balance, says the task force, that's too much exceptionalism.
Of course in the real world, we don't know whose life that is – it might be yours. And while science fixates on the mythical average woman, doctors see much more room for variation from the mean – especially in breast cancer, where family histories and genetic mutations can indicate a strong susceptibility to the disease.
"The tension in medical practice comes from figuring out how to translate guidelines," says Neel Shah, who runs an NGO called Costs of Care. "The very best doctors look at patients and try to figure out how they could be different from the average. Guidelines aren't gospel, they're just a starting point."