Malignant. S. Lochlann Jain

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Malignant - S. Lochlann Jain

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are worth, the expenses that remain, such as co-pays, deductibles, or costs after certain coverage ceilings, can be crushing. When I moved from Canada to the United States to go back to work after my treatment (yes, I ended up staying in Canada for treatment), my insurance covered only 80 percent of my follow-up medical care. The bills from the Stanford Cancer Center for the remaining 20 percent added up to hundreds and then thousands of dollars (much more than I was told when I called in advance to find out how much it would cost, and more than half of that total resulting from an accounting error). The bills came weekly, not monthly—no matter how many hours I spent on the phone explaining the mistake. Soon enough I felt trapped inside a snow globe with endlessly generated medical bills spilling down around me, creating ghastly drifts of white envelopes with that Stanford crest that came to mean “do not open this.” Collection agencies call 46 percent of cancer patients in the United States; I was one of them.20 Experts often attribute over 60 percent of personal bankruptcies in the United States to the catastrophic financial burden of illness, with little mention of the skewed economy that distributes not just enormous wealth but also enormous debt. Even if you enter the illness casino with a few coins jangling in your pocket, seeking healthcare is a gamble in which the house enjoys vastly superior odds.

      To add to the built-in paradox of the for-profit healthcare system, money made from treating cancer aligns a little too comfortably with the profits made from causing cancer. In the FDA’s first attempt to bring cigarettes under their regulatory purview as a drug (nicotine) delivery device, the Supreme Court in 2000 weighed economic and physical health and, in the final opinion, explicitly noted that the tobacco industry played too important a role in the U.S. economy to be regulated by the FDA—even as it recognized that nicotine was an addictive drug whose dose tobacco companies intentionally manipulated.21

      Here is another example that demonstrates the tightly linked interests that both cause and treat cancer. In 1978, Imperial Chemical Industries (ICI), one of the largest companies in the world, specializing in agrochemicals and pharmaceuticals, developed the cancer drug tamoxifen. In 1985, along with the American Cancer Society, ICI founded the National Breast Cancer Awareness Month with the aim of promoting mammography as the most effective tool against breast cancer. In 1990 Imperial Chemical Industries was accused of dumping DDT and PCBs, known carcinogens, into the Long Beach and Los Angeles harbors.22 Zeneca, producer of tamoxifen, demerged from ICI in 1993, and later merged with Astra AB in 1999 to form AstraZeneca. Astra AB had developed the herbicide acetochlor, classified by the EPA as a probable carcinogen.23 In 1997 Zeneca purchased Salick Health Care, a chain of for-profit outpatient cancer clinics. Subsequently AstraZeneca launched a major publicity campaign encouraging women to assess their risk factors for breast cancer, downplaying the dangers of tamoxifen in order to create a market for its prophylactic, or chemopreventative, use and, more recently, for the breast cancer drug Arimidex (anastrozole), approved in 2002 and used as an alternative to tamoxifen (Arimidex went off patent in 2010).24

      Dr. Samuel Epstein, a professor emeritus of occupational and environmental health at the University of Illinois School of Public Health, commented on this situation: “You’ve got a company that’s a spinoff of one of the world’s biggest manufacturers of carcinogenic chemicals, they’ve got control of breast cancer treatment, they’ve got control of the chemoprevention [studies], and now they have control of cancer treatment in eleven centers—which are clearly going to be prescribing the drugs they manufacture.”25 AstraZeneca has been successfully sued by several states for illegal price inflation of tamoxifen. Among other such cases, AstraZeneca settled one in Idaho and lost another on appeal in Massachusetts when the court upheld a $12.9 million fine.26

      Similarly, even while General Electric and DuPont sell millions of dollars’ worth of mammography machines and film annually, they have also poured tons of toxic waste into the air and water, creating high numbers of Superfund sites (abandoned hazardous waste sites so designated by the Environmental Protection Agency).27

      In such a climate, the focus on awareness and screening does not bring us any closer to understanding the ways that key aspects of the economy involve both causing and treating cancer. (All of us who drive, buy strawberries, live in homes, wear PJs coated with flame retardant, and receive purchase receipts covered in carcinogens take part in that.) Yet even if one believes in the legitimacy of causing and curing cancer as market opportunities, cancer cannot be understood solely through an analysis of economic interests.

      Susan Sontag believed that one must free illness of its metaphors in order to truly see it, and she dug up the history of derogation surrounding the proverbial emperor of maladies.28 I suggest, on the contrary, that the key lies not in undressing the emperor, but in examining the costumes. Cancer appears only at the nexus of our ways of thinking about it. I don’t mean to argue that “it” doesn’t exist, or that it doesn’t maim and kill people. But it can’t carry meaning outside of the meshy nets we use to locate and describe it. The history that Sontag identified, as well as many other histories that she didn’t, offers clues about cancer’s role in America.

      Cancer, as a chimera, gains different registers of meaning in different places. It envelops and is an effect of oncologists, insurance provisions, support groups, survivor workshops, and medical research. Cancer is stacks of Reader’s Digests, furtive glances and hasty conversations in waiting rooms. It is evenings spent working out complicated medical bills and long phone calls with befuddled insurance bureaucrats. It is cracking the code of how to play your “cancer card” and what value, versus what backlash, it might have. It is wondering if anyone would come to your funeral. Would you look like a big dork if you died in the summer while everyone was on vacation?

      FIGURE 1. California Proposition 65, passed in 1986 through a ballot measure, requires businesses to post warning signs when exposing customers or bystanders to specific levels of chemicals listed on a twenty-two-page roster of known, legal carcinogens. The business must determine any likely exposure that will result from a chemical. The signs are posted everywhere in California, like flags of surrender. (Photo by author, Stanford Cancer Center parking lot)

      In a renowned 1923 analysis of gift exchange in different cultures, the French anthropologist Marcel Mauss unpacked connections he found in a ritual that had previously been understood as the purely benevolent act of offering and receiving. In so doing, he coined a term, total social fact, for a practice whose effects both connect and fissure through seemingly distinct areas of life, thus weaving them together. In a legendary passage, Mauss explains the total social fact (I substitute cancers here for practices of gifting that he describes): “These phenomena are at once legal, economic, religious, aesthetic, morphological and so on. [Cancers] are legal in that they concern individual and collective rights, organized and diffuse morality; they may be entirely obligatory, or subject simply to praise or disapproval. [Cancers] are at once political and domestic, being of interest both to classes and to clans and families. They are religious; they concern true religion, animism, magic and diffuse religious mentality. [Cancers] are economic, for the notions of value, utility, interest, luxury, wealth, acquisition, accumulation, consumption and liberal and sumptuous expenditure are all present.”29

      Like a Maussian gift, cancer has entered our collective imaginations at all of these levels. Not only does it work through the metaphors of metastasis, recurrence, and remission, but it is also at one moment a paper trail and at another an identity, at one place a statistic and at another a bankruptcy; here, a scientific quandary, there, a transcendent image of a cell. One person’s losses offer another a chance to leave a mark on humanity. A body image taken offers another to be found. The project of making cancer—as plural as it is singular, as vast as it is microscopic, as diffuse and discrepant as it is descriptive—resonates under one word. The simple noun cancer consolidates this collective achievement.

      Cancer in all its complexity is not solely a biological phenomenon, but a politics with which to engage and struggle. Why does metastatic

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