The Cancer Industry and the True Cost of Treatment

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In the past 50 years, the cancer industry has emerged as a multi-billion dollar giant. While not many critics complain that too much money is spent on research and treatment, even fewer point out how much business cancer patients bring in.
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Combining memoir, industry, and cultural analysis, "Malignant" (University of California Press, 2013), by S. Lochlann Jain, offers a look at the cancer industry, and the disease's place in American life.

Malignant (University of California Press, 2013) explores the multitude of ways in which cancer affects our everyday lives, whether we are aware of it or not. Author S. Lochlann Jain, a professor of anthropology and a survivor herself, probes cancer as a set of relationships: economic, medical, personal, ethical, institutional, and statistical. In this except from the introduction, the economic footprint of the “Cancer Industry” is explored.

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The Cancer Industry and the True Cost of Treatment

If you look up cancer in a medical dictionary, you will read that cancer begins when an injured cell speeds up the normal process of division. Eventually these quickly dividing cells may form a tumor, which then may build its own set of blood vessels in order to feed itself in a process called angiogenesis. (Blood cancers, or liquid tumors, don’t form static tumors in quite the same way.) Some cells may break off from a localized tumor and move to a different part of the body, colonizing a vital organ or bone. For most cancers, once this metastasis happens, you are probably sunk (a term one will not find in medical journals but that nonetheless feels accurate). These distinguishing features describe at least several hundred diseases that flutter under the cancer banner.

A more truthful account of cancer would require a full-blown epic movie series, for cancer has become a central, silent, ubiquitous player in twentieth- and twenty-first-century America. One would watch images of our greatness fading in and out to a heart-swelling orchestral score. Each of America’s iconic industries —agriculture, oil and gas, cosmetics, plastics, pesticides, tobacco, medicine, construction, military—has undoubtedly led to tens of millions of cancer deaths. The unique way in which cancer presents, decades after exposures, makes it central to the growth of both the industries and the illness, in short, to the existence of the United States as we know it.

If I were to direct such a movie, I would start by examining how cancer has become a potent metaphor for anything evil or scary. As a result, cancer—or at least the fight against it—provides a moral ground for anyone taking a stand against something bad, something that indeed might “metastasize” or spread, whether guns, fascism, or gay people. If the disease itself provides the archetype of malevolence such that “curing cancer” offers an equivalent to “saving the world” in all kinds of thought experiments, the stereotype of the diseased victim that one treats with kid gloves can be useful, too. Witness Tour de France winner (or ex-winner, since he has now been stripped of his seven victories) Lance Armstrong’s use of his year in treatment to at once explain his greatness and divert attention from his performance-enhancing drug use.

Tobacco’s relation to cancer has been well rehearsed. But for good measure my production crew would run footage from the 1970s, describing how the cigarette industry brains shifted the demographics of lung cancer with the jingle “You’ve come a long way, baby” for their special feminist cigarette, Virginia Slims. By sponsoring women’s tennis and advertising specifically to African Americans when no one else would, cancer incidentally joined progressive causes. The tobacco industry’s role in cancer does not end with the millions of lung cancer deaths. The industry inadvertently enabled the rise of the field that became epidemiology as a result of controversial attempts to link lung cancer to smoking. My blockbuster would describe how cancer also provided opportunities for major public health campaigns and philanthropic endeavors, shaping the form of both of those areas of the American Experience. In one ironic twist, the widow of the ad executive behind the 1930s advertising campaign “Reach for a Lucky Instead of a Sweet” became one of the main activists promoting the War on Cancer, launched in 1971. Cancer giveth fortunes and taketh them away.

Another thread of the documentary would focus on notable Americans prematurely lost to the disease: from Steve Jobs to James Baldwin, from Humphrey Bogart to Judi Bari. A full section would detail the life of Rachel Carson, the scientist who initiated the modern environmental movement with her book Silent Spring before her own name was added to the list of brilliant people—people we needed—dead of cancer. I’d include a section titled “The Celluloid Send-Off,” which would review a century of film and the star appearances of cancer as a sentimental storytelling trope.

I would wrap my producer’s blood pressure cuff around the military technologies that pumped the lifeblood of an American Century. The development of chemotherapy resulted from the autopsies of soldiers who had been killed by nitrogen mustard gas in World War I; it was found that the gas eradicated white blood cells from bone marrow and lymphatic tissue. Although the use of radiation as an experimental therapy for cancer patients began before World War II, the increased focus on its development coincided neatly with the government’s attempt to represent the “friendly” potential of nuclear technology. (Sure, radiation killed all those Japanese people, but it can do good things too!) Both of these cancer treatments led to the creation of a massive, powerful, and lucrative infrastructure even amid controversy about their efficacy. The military and cancer have enabled one another in ways that have yet to be understood.

Midcentury cancer experts adopted industrial research methods—often those developed by the automobile industry—in which multidisciplinary teams worked together. Meanwhile, the use of cancer patients for medical experiments during the early and mid–twentieth century led directly to the development of the human subjects protocols in 1978 that now protect patients and guide all manner of research. At least half an episode of my film would be devoted to the first treatments for the HIV/AIDS epidemic, which were initially developed as experimental cancer treatments in the 1960s.

We would have to figure out a way to trace the forces at play in the appearances and disappearances of the corroding bodies that lie at the center of each of so many conflicting projects.

None of these facets of cancer-in-action are in the dictionary—but they would be in my documentary. So would the growth trajectory of the pharmaceutical industry, along a crucial vector starting with Jonas Salk’s 1955 claim that patenting the polio vaccine would be like patenting the sun and extending to Genentech’s proclamation in 2008 that it would charge the highest market rates for its cancer drug Avastin. (And it did so for three years, until the Food and Drug Administration [FDA] withdrew Avastin from the market as a breast cancer treatment, since it did nothing to improve survival rates.)

The documentary would not, however, attempt the impossible project of unscrambling the too-quickly dividing cells from American history. Much as we might want to render cancer an external threat to be battled, it just is not so. Cancer is our history. Cancer has become us. Manifest within individual bodies—many, many bodies—it is also embedded within this country’s key industries, medicine not least among them.

The combination of a for-profit medical system, the rise of trials and institutionalized industrial methods of cancer research and treatment, and the enormous investments required for radiation and chemotherapy have created the perfect storm, turning the once-backwater specialty of oncology into a major economic force that ties together treatment, pharmaceuticals, insurance, law, and research. Cancer has the highest per capita price of the nation’s medical conditions.

In the last five decades, cancer has gained traction as a multibillion dollar business. The National Cancer Institute’s budget alone totaled $5.3 billion in the fiscal year 2011–2012; other federal agencies (including the FDA, Centers for Disease Control [CDC], and Department of Defense [DOD]) chip in a further $670 million for cancer research; and nonprofits, industry, and the state contribute several hundred million more. The National Cancer Institute (NCI) reports that the medical costs of cancer care add up to some $125 billion, with a projected 39 percent increase, to $173 billion, by 2020, while the National Institutes of Health (NIH) doubles that with an estimate for 2010 of $263.8 billion. Their accounting includes $102.8 billion in direct medical costs (or health expenditures), $20.9 billion for indirect morbidity costs (lost productivity due to illness); and $140.1 billion for indirect mortality costs (lost productivity due to premature death)

While some methods of calculation find that cancer and its patients take up too many resources, from another angle, cancer patients are cash cows. Each cancer patient generates millions of dollars in revenues. If one wonders why we would extend the life of a pancreatic patient for a dozen days with a $16,000 drug, let’s remember that this money does not evaporate after twelve days; it continues to circulate in stock prices, salaries, and smaller crumbs of an infinitely profitable cancer pie. Just as the demon of communism justified the proliferation of a lucrative nuclear industry, so cancer fills the core of so many economies that if a cure were to be found, the economy might just crash.

The medical industry has found a way to align (or perhaps it emerged from the alignment of) just enough ducks to be able to tart up a coercive economy in market terms. Putting a market value on health makes this possible. If you wanted my money, the best way to get it would certainly not be to rob me (I have only $43 in my pocket) or to take me to court (my insurance will offer you only $1 million if you slip on a banana peel in my apartment). Nor would it be to take me to the collection agency, offer me a mortgage, or get access to my life insurance. The best way to get my money would be to offer me many rounds of treatment for a deadly illness and make sure my insurance pays for them. For medical care—more than housing, childcare, education, food, fashion, transportation, or gym fees—an insured person can pay much, much more than his own worth. She can pay much more than any free market would bear. This economic skew creates a health bubble in which anyone with insurance, and especially anyone with both cancer and insurance, is a gift that just keeps on giving to those who can provide what he needs.

The resulting distortion affects consequential definitions of health. My financial advisor, for example, might recommend that I take pills with a co-pay of $35 a month, rather than pay a gym membership fee of $99 a month. Costs remain high even for tests and treatments that have not significantly improved in the last decade, such as magnetic resonance imaging. It’s no surprise, then, that healthcare has become the most profitable industry in the economy. And most people will pay anything for a small chance at living longer. As one young man put it, “If they told me to eat pinecones, well, I would do it.” If oncologists started prescribing them, and insurance covered the cost, pinecones would become more and more expensive. One in five dollars in the economy goes toward this haphazard version of “health.”

As many commentators have noted, a privately funded, for-profit medical system does not create the most likely scenario for the shattering of scientific frontiers. The pharmaceutical industry offers a case in point. With the cost of bringing a drug to market in excess of $800 million and low FDA approval rates for new cancer drugs, any investment in new drugs is highly risky. Simple math confirms that drugs with expandable markets will bring more profits than drugs for targeted illnesses impacting smaller populations. The annual top-ten list of most profitable drugs in the United States typically includes drugs with elastic definitions of diagnosis—depression, anxiety, insomnia, high cholesterol, sexual dysfunction: all markets that have been steadily increasing.

This market force disinclines private industry from working on subcategories of cancer. Various problems result. First, drugs are often tested on large and diverse subject groups in order to capture the largest populations. The results of such studies make it impossible for doctors to extrapolate just which individuals would benefit from any given treatment. Second, little incentive exists to produce generic drugs, which bring low profits. For this reason, for example, mechlorethamine, ornitrogen mustard, one of the original chemotherapy drugs tested in the1960s in the treatment of childhood leukemia, has been in short supply. A recent study on the impact of the shortage found that the substitute drug significantly reduced survival, having “devastating effects on [children] with [otherwise curable] cancer.”

Several common cancers, therefore, come under the purview of rare diseases, which the Orphan Disease Act of 2002 describes as affecting “more than 200,000 in the United States and for which there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will be recovered from sales in the United States of such drug.” This remains generally the case even with the rise of a few “boutique” drugs, in which extremely expensive drugs are profitable at the cost of excluding many from access. Ironically, what makes for good science makes for poor economics; subsets shrink markets, thus reducing the chances that companies will develop more specific treatments.

Thus, health resists market quantification. Putting health in market terms somehow crushes the notions of choice that undergird true market actors and give them an intimidating tinge (sure, you could refuse this $100,000-a-week incubator for your sick child). Such systematic market and health forces have nothing per se to do with ill intent. (I’m not saying that anyone is evil.) No one necessarily wants corporate interests to trump human well-being or important scientific research. But the chances that a sector whose binding legal concern is stockholder profit will lead to adequate research and better public health are slim. When the question becomes one of math, anyone can do it.

While insured people can “afford” much more than we 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. 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.

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. 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. 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 (Arimidexwent off patent in 2010).

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.” 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 $12.9million fine.

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).

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. 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?

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.”

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 breast cancer receive only 3 percent of research dollars when the tens of thousands of people who die of breast cancer will die of metastatic cancer? Who suffers the effects of the recent court decision to disallow graphic warnings on cigarette packages? How are cost and benefit determined in screening debates? Who should pay for inevitable surgical errors? Who considers, and who suffers from, the unintended consequences of institutional blind spots? The questions framed in various expert and lay areas, and the forms that the answers take, provide clues about the values that underpin our understandings of cancer, just as crude oil oozing from a pipeline onto the Arctic snow discloses the dominant values of the society that laid the pipe. My book is not only about how the framings of cancer affect psychic, medical, and institutional experiences, but also about how understandings of cancer reflect back onto the cultures that have defined it.

Astrologists and scientists alike derive meaning from the set of dividing cells and its namesake, the constellation in the zodiac. The configuration we dimly recognize as a crab, suspended between its brighter siblings Gemini and Leo, takes shape through a specific alignment of stars, some of which we see as they were hundreds of millions of years ago. Cancer’s earthy doppelganger, also, threatens to disintegrate with each shift in perspective. The pathology report, the prognoses, the scars, the data and graphs, the looks on parents’ faces, the shiny hospitals with their infusion rooms and IV drips, the marches and fundraising translate the uncertainty at the center of what we call cancer into a thing that we can call cancer. But just barely.

Reprinted with permission from Malignant: How Cancer Becomes Us by S. Lochlann Jain and published by University of California Press, 2013.

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