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Cancer Culture

Hope is a thing with profits

In 1971, after the United States had declared a War on Poverty but before the Wars on Drugs and Terrorism, Richard Nixon declared a War on Cancer: a battle against the bad cells that attack our bodies. Three months earlier, Lewis F. Powell, a lawyer on the board of Philip Morris and future Supreme Court justice, had written a confidential memo with lasting consequences that urged corporations to become more aggressively involved in politics in order to advance their own interests. In metaphoric terms, then, cancer was an apt disease of the times: a problem of unchecked growth, deadly and yet slow to materialize. Its elevated status was cemented over the following decades, as cancer became an economic, bodily, ecological, and spiritual question threaded through every facet of American life. It was against this backdrop, in 1975, that a merchant banker named Richard Stephenson bought up a community hospital in Zion, Illinois, a pious town along the western shore of Lake Michigan, just south of the Wisconsin state line. Eventually ballooning into a network of hospitals christened the Cancer Treatment Centers of America, it became a business catering to the most desperate—one of a boom industry’s most grotesque manifestations that in 2013 was valued roughly at $1.36 billion.

According to the company’s lore, a story I would hear recounted many times during my visits to Zion, Stephenson rebranded the Zion-Benton hospital in 1988 following the death of his mother from bladder cancer. In 1990, he acquired a second hospital in Tulsa, Oklahoma—the former City of Faith hospital that had been constructed in 1978 by Oral Roberts after he received a vision from a nine-hundred-foot-tall Jesus. In addition to Tulsa and the flagship hospital in Zion, the CTCA would go on to open more treatment centers near Philadelphia, Atlanta, and Phoenix. Their treatment model became known as the “Mother Standard” and sought to treat the whole person: mind, body, and spirit. In addition to traditional medicine—chemotherapy, radiation—the CTCA offers patients acupuncture, chiropractics, nutritional advice, naturopathy, and spiritual support. They also promote expensive, cutting-edge treatments like immunotherapy. “It’s really unbelievable how one doctor can tell me I have two months to live, and then I go the Cancer Treatment Centers of America, and they save my life,” says a woman featured in one of the CTCA’s many television advertisements, whose intertitle informs us that “You have no expiration date.” According to its slogan at the time, CTCA is “winning the fight against cancer, every day.”

When it’s not likened to a “fight,” cancer is often framed as a “journey,” a soul-fortifying pilgrimage through dangerous geography. In the opening passage of Illness as Metaphor, Susan Sontag dubbed it “the kingdom of the sick.” Christopher Hitchens called it “Tumortown;” Barbara Ehrenreich, “Cancerland.” But at the CTCA, patients are first welcomed in their journey by a concierge at what’s called “First Connections”; at the Zion hospital, a moss-colored oil portrait of Stephenson beams down from the front desk. The green glass roof of the airy atrium here feels otherworldly, Oz-like. “Having spent much of my career in the hospitality industry,” former CTCA CEO Gerard van Grinsven told Forbes in 2014, “I’m pleased to see that more and more hospitals are beginning to incorporate principles of hospitality leadership in their operations.”

After First Connections, patients at CTCA are met by a team of doctors, pastors, and mind-body therapists, who together determine a course of treatment—no shuffling from one office to the next. In its careful orchestration of a patient’s experience, the CTCA feels in some ways like the Disneyland of cancer treatment, though it is perhaps most like an all-inclusive resort: streamlined and padded with perks. Patients enjoy limousine service, chiropractic visits, organic meals, and an on-site salon that offers wigs, pedicures, and manicures. They can call the Dial-A-Prayer hotline, receive Reiki treatments, or dabble in Chinese medicine. Every summer, during the annual Celebration of Life, cancer survivors gather in nearby Shiloh Park to plant trees in honor of their continued longevity, their ongoing defiance in the face of death.

Remember thee Zion

Since the shutdown of the ConEd power plant in the late 1990s, Cancer Treatment Centers of America has become Zion’s biggest benefactor, employing over 1,600 workers in 2014. While the expansion of the business has seen the tearing up of the historical downtown for corporate offices and soaring in-patient towers, Richard Stephenson’s lucrative vision of a cancer-free world echoes in some ways Zion’s original vision. Founded in 1900 by the faith healer John Alexander Dowie, it was one of the largest Christian utopian communities in modern American history. Dowie planned Zion as an industrial city in a grid pattern, with the church at its heart and all other directional points emanating outward from this holy center: God’s company town. Its streets roll along in alphabetical order, a collection of biblical names laid like latticework over plowed groves of hickory and oak. “Jesus has come to make His people rich,” Dowie once proclaimed to the faithful. Under the civic motto “Where God Rules, Man Prospers,” spiritual well-being in Zion was understood to be manifested through the accumulation of earthly fortune. Today, the Cancer Treatment Center of America is located on Elisha Avenue, across the street from Shiloh House, where Dowie once resided. The street was formerly called Apostle’s Row, for all the church officials who lived there, although none resided in so grand a home as Dowie’s: a twenty-five-room mansion of brick and Indiana limestone, built to resemble a Swiss chalet.

The CTCA specializes in rare and late-stage cancers, and people flock to Zion from all over the country to be treated there, ferried the forty miles north from Chicago’s O’Hare airport in the company’s trademark limos which are emblazoned with the CTCA logo: a green oak tree that spreads its shady benevolence over a boy flying a model airplane while a small dog nips at his heels. According to the CTCA, “the boy and his dog convey the optimism of youth, and allude to new beginnings, soaring spirits, years of love, laughter, and loyal friendship, the richness and joy of life and all life offers.” Once you begin to look, this oak tree is everywhere around town—on signs for valet parking, on tote bags, on awnings, and in shop windows.

The disease’s elevated status was cemented over the following decades, as cancer became an economic, bodily, ecological, and spiritual question threaded through every facet of American life.

On my first visit to Zion, in 2015, I stayed at the Inn at Market Square, a former Best Western, where a photograph of Dowie hung outside my hotel room. “Are you here with the hospital?” the hotel clerk asked me when I checked in. At Callie’s, the hotel’s boutique and coffee shop, guests could buy sweatshirts reading “My God is Bigger Than Cancer,” pink-frosted cookies in the shape of cancer awareness ribbons, and wine glasses scrawled with “Save the Ta-Tas.” Every twenty minutes, a white van with the oak tree logo arrived to pick up name-badged patients waiting in the lobby, where the vinyl letters on the wall promised that “Everyday holds the possibility of a miracle.” (Like many post-industrial towns across America, Zion has slid into a dream economy: the production of happy feelings.) The Inn is curved into the same iconic barrel shape as the demolished Elijah Hospice it replaced, a massive early twentieth-century structure that had once been clogged with men staking their claim to Dowie’s paradise. The Inn was one of the few signs of new development along Sheridan road.

In Zion, I was confronted with multiple profound ironies: how, for example, a multimillionaire banker launched his cancer empire on the former utopia of a disgraced faith healer who may have shared his belief in the prosperity gospel but famously shunned doctors—or how a town whose main industry is health could also house casks of radioactive nuclear waste (its expansive waterfront now stores spent nuclear fuel rods from the shuttered ConEd plant). Zion’s 2015 plan for economic development proposed the town be rebranded as a “center for healing and wellness,” further partnering with the CTCA to transform the downtown into a “medical district” and extend the city’s founding principles of clean living.

Cancer Karaoke

This August, I paid a visit to the CTCA’s Cancer Fighters Corner, where it was time for karaoke. A mic stand was installed in the lobby before the portrait of Stephenson. The Cancer Fighters group bills itself as a nationwide community of over twenty thousand members devoted to “strength, optimism, and hope”; in reality, they function as brand ambassadors for the CTCA. At the time of my trip, a little under half of the Cancer Fighters were based at the CTCA in Zion.

As the chaplain operated the audio equipment, volunteers took turns going up to the stage to sing. Two Cancer Fighter Ambassadors were running the show: Robbie Robinson and Steve Box. They volunteered at the hospital every Friday, and photographs of their faces, glowering in silk robes and boxing gloves, hung near the coffee station. In 2018, both had attended a VIP reception at a football game at Stephenson’s alma mater, where the halftime ceremony paid tribute to CTCA patients who had won their fight against cancer.

I flipped through the binder of songs. On the first page, in the lower corner, Psalm 126:5 was typed out: “Those who sow with tears will reap with songs of joy.” Scanning the calendar of other activities being offered in the Cancer Fighters Corner, I saw ice cream socials, adult coloring, bingo, and crafting. It was fitting, then, that Steve and Robbie had the fervent air of camp counselors or youth missionaries. They sang, joked, cajoled, and sympathized. They were always, unfalteringly, on message. At one point, Steve looked directly into my eyes and said, “There’s a little hidden tattoo on our forehead and it says hope.”

Later, Robinson belted a spirited rendition of “Sittin’ on the Dock of the Bay,” and all six of us seated in the atrium that afternoon were bobbing our heads and clapping. When he finished the song, Robinson said, “I’m telling cancer to f off. Like my shirt says, ‘I’m not done yet.’” Not Done Yet was the name of his Facebook Live podcast. On the back of the shirt, I saw, was an Excalibur-type sword dipped into a chalice of blue flames, with the words “Cancer Slayers” printed in gothic script on either side. He asked around if anyone wanted a cold bottle of water, which he delivered with waiterly efficiency.

The typical CTCA ad brims with familial coziness. There are domestic scenes with honied voiceovers; cameras pan to framed photos of smiling nuclear families—the faces of survivors—while informing viewers that these are real patients.

Karaoke hour closed out with the slow dirge of Leonard Cohen’s “Hallelujah,” and afterwards three women circled around Robinson, all proclaiming their love of the CTCA. “Their ads undersell it, I was sold since day one,” one said. These women were not unique: all the people I spoke with at the hospital praised the place. It has been rated among the top hospital chains in patient satisfaction. Everyone gushed about the pleasantness of the staff, from doctors and nurses to security guards and drivers. They gushed about its speed and ease, how the CTCA could accomplish in three days what took other hospitals three weeks. They gushed about the limo pick-up and private rooms and free meals in the cafeteria. And they gushed about the real feeling of community found in the hospital, the people gathered from all over the country, from all walks of life: the prevailing sense that everyone was in it together.

“Is CTCA a nonprofit?” one of the women asked Robinson after karaoke. He admitted that it was not, but then said, “But does Northwestern get money from their patients?”

I talked to a woman named Carol sitting across from me, who was waiting for her partner Gary to finish his last round of chemo. They were karaoke regulars but didn’t sing. “We’re two-steppers,” she explained, and said they liked to dance in the lobby. Later, Gary would come down to the atrium carrying a blue certificate of completion that all of his nurses had signed. The couple was from the Quad Cities, a four-hour drive south, and they had been coming to CTCA since last January, after Gary was diagnosed with colon cancer. He had been lying in his hospital bed in Moline after having eight inches of his colon removed. He had seen their ad. After returning from his CTCA consultation, Gary said his oncologist in the Quad Cities had balked at their proposed course of treatment, calling it overkill. “It’s probably overkill on your part, but it’s my body,” Gary told me. “I walked out of there and never looked back.” In January, Carol set up a GoFundMe page for the $6,000 in out-of-pocket expenses the treatment would cost them. She managed to raise $450. Gary didn’t fall into the poverty category, the CTCA informed him, though they could fill out paperwork to get reimbursed for certain costs. At this point Gary just wanted to be done. “Money very tight now,” Carol wrote on the GoFundMe page in July, thanking everyone for their prayers and saying she would visit the food pantry when they returned home from the hospital.

“You just feel something. Being scared, or worried about Gary, it all melts away when I walk through that door,” Carol told me, about their time at the CTCA. “You just don’t find the love anywhere else.”

Growth Industry

Global cancer spending is forecast to reach $240 billion by 2023. In the United States alone, more than 1.7 million new patients are expected to be diagnosed this year. “If one wonders why we would extend the life of a cancer patient for a dozen days with a $16,000 drug,” S. Lochlann Jain writes in Malignant: How Cancer Becomes Us, “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.” The CTCA and countless other parasitic entities like it have hit on an unbeatable product: the desire to keep living.

In the byzantine system of proprietary health care, with its complex labyrinth of insurance providers, hospitals, and pharmaceutical companies, the true costs of cancer treatment can be notoriously opaque. Bills often descend—not unlike the symptoms of cancer itself—long after procedures, making it difficult for patients to fully estimate or comprehend the full cost of their care. What’s certain is that cancer is one of the most expensive diseases; even those with private insurance experience greater out-of-pocket costs. In a study of 9.5 million cancer survivors, 42 percent had drained their life savings within two years of diagnosis. The financial burden can be so great that the National Cancer Institute has introduced “financial toxicity” into their dictionary of medical terms. CTCA, as a privately held company, does not disclose its profits, though in 2014 it reported a revenue of $615 million.

That was the year I met with Percy McCray, Jr. the CTCA’s national director of pastoral care. McCray, a former car salesman, is a large, charismatic man whose tone rises and falls with a preacher’s practiced cadences — first loud and lively, and then descending to a dramatic hush. “It’s an amazing story,” he told me in a whisper. “In the marketplace the key to success in selling your product is advertising,” he later explained. In this way, the CTCA was able to circumvent traditional gatekeepers—the family doctors and local hospitals who dole out referrals—to reach the sick directly. In McCray’s telling, the CTCA was a plucky upstart battling established brand-name titans, your Mayo Clinics and MD Andersons. “We’ve had a lot of people who have said, ‘Well, I listened to my hometown doc at first, and I went and did this, and I was dissatisfied. But I didn’t forget that I saw that commercial on TV.’” “We were ridiculed and almost laughed off the block,” McCray continued. “But our chairman, who is a maverick and a rebel in every way, he simply would not allow that to deter him. He really believed that he would change the landscape of how cancer is being treated.”

Stephenson’s rags-to-riches story is the usual pablum: he grew up in small-town Indiana, the son of a druggist. But various reports reveal a different picture of the CTCA founder who describes himself as a “servant leader.” By some accounts, he is more corporate crook than empathetic visionary. Before the CTCA, in 1966, Stephenson was a trustee for Americans Building Constitutionally, a group that helped the rich create non-profit foundations and private trusts as tax havens. After the group came under investigation, Stephenson pleaded no contest to false advertising in 1969.

Perpetually cagey about his finances, Stephenson requested that his financial records remain sealed during what the Chicago Tribune called “one of the longest-running and high profile divorces in recent Chicago history,” a vulgar courtroom spectacle pitting him against his ex-wife Alicia Stephenson from 2009 to 2017. Still, eye-witness testimonies described an extravagant lifestyle: backstage audiences with Bon Jovi, parties with caviar bars and chocolate fountains, flying in private jets to homes in Colorado and the U.S. Virgin Islands. An accountant testified that Stephenson made more than $157 million in 2007 and $54 million in 2008. More compelling is what he spent. Mother Jones reports that, according to leaked documents, Stephenson siphoned tens of millions of his own personal wealth and that of the CTCA into FreedomWorks—an influential libertarian lobbying group that splintered from the Koch-founded Citizens for a Sound Economy and which Stephenson sits on the board of—in exchange for help marketing his hospitals. (In 2017, Stephenson was awarded a Horatio Alger Award and called a “treasure to many non-profit organizations with a focus on liberty, private property, free markets and individual freedom.”)

The typical CTCA ad brims with familial coziness. There are domestic scenes with honied voiceovers; cameras pan to framed photos of smiling nuclear families—the faces of survivors—while informing viewers that these are real patients. Cutting through the terror and bewilderment of disease is always the same pugilistic story of survival, of unlikely triumph, that has come to dominate the cancer narrative. “I was not about to accept those odds,” says one woman on the CTCA website, “I wanted to live, and I was going to do what it took to make sure I survived.” This rhetoric, of course, is not exclusive to for-profit enterprises like the CTCA—this implicitly moralistic language, carrying with it the air of Christian testimony, is everywhere in the world of cancer treatment, including at influential non-profit hospitals like Memorial Sloan Kettering. Yet what’s more subtly coded in other ads is made explicit in the CTCA’s. In their promotional literature, trademark symbols dangle from the words life.

This marketing has a long and sordid history that goes beyond its funding. In the 1980s, the Chicago Tribune ran a series of articles on the hospital’s “brainwashing” of consumers. The Federal Trade Commission charged CTCA in 1996 with false advertising, holding that the health benefits of procedures such as “whole body hyperthermia” and “brachytherapy” could not be scientifically proven. And while their experimental therapies continue to be branded as top-of-the-line and cutting-edge, CTCA does not disclose the risks or actual efficacy of what are some of the most expensive treatments on the market. Since the 1960s, says Candy Gunther Brown, author of The Healing Gods, holistic medicine has gone mainstream, part of the larger institutionalization of “wellness.” According to an American Hospital Association survey, more than 42 percent of hospitals now offer alternative treatment, from herbal medicine to massage therapy. “People are desperate for anything that might conceivably help them,” Brown told me over the phone, adding that what might set CTCA apart is how heavily they market the holistic approach.

“They treated him like a movie star until the insurance money wouldn’t pay,” a woman named Rose told me about her ex-husband’s experience at the CTCA.

The CTCA faced controversy again more recently when, in 2013, Reuters exposed how they deliberately skew their survival data by admitting fewer patients with Medicare or Medicaid, insurance held by older and poorer people—in other words, those with decreased potential for the kind of miraculous, oak tree-warranting recoveries that the CTCA makes a business of cultivating. The following year, it was revealed that 91 percent of patients at the CTCA branch in Georgia had private coverage. While acknowledging that many health care providers turn away patients without the means to pay (and bleed dry those who do), what distinguishes the CTCA, the Reuters report said, is that their cherry-picking was in service of flaunting higher-than-average recovery rates in their ads. According to the consumer watchdog group Truth in Advertising, CTCA is responsible for half of total ad spending for cancer treatment.

“They treated him like a movie star until the insurance money wouldn’t pay,” a woman named Rose told me about her ex-husband’s experience at the CTCA. He had traveled from California to treat his stage four colon cancer, only to be turned away as he was being wheeled into surgery for a costly operation. After the first consultation, for which they flew him to Illinois free of charge, he had been ecstatic. “It almost sounds like a timeshare,” she said. “They set you up with people who have been in remission, so it’s kind of like they’re walking advertisements for their particular treatment.” “Other hospitals don’t do that,” she continued. “They lure people like him. He probably would have sold his soul.”

“No case is typical,” the CTCA’s ads warn in nearly unreadably small type. “You should not expect to experience these results.”

The Search for a Cause

The religious movements of the nineteenth century, like New Thought, Christian Science, or even Alexander Dowie’s own brand of faith healing, were based on the notion that bodily health was a reflection of moral virtue. The belief, implicit or not, that emotions cause diseases or affect outcomes is an old one, and even today one’s health is often linked to having the right attitude. “When I was given a diagnosis of cancer, my first thought was not, Will I die? but rather, How can I beat this?” wrote physician Fitzhugh Mullan in his essay “Seasons of Survival: Reflections of a Physician with Cancer” in the New England Journal of Medicine in 1985, just before the CTCA was founded. Mullan co-founded the National Coalition for Cancer Survivorship in 1986. Ten years later, the National Cancer Institute established the Office of Cancer Survivorship and institutionalized a cultural ideal.

In Illness as Metaphor, Sontag describes how diseases are made not only in the body but also in the culture, where they become charged with our fears of others and ourselves. So it’s no surprise that cancer is often seen as something shameful and repugnant, an enemy to be overcome with a positive attitude, hard work, and faith—in God, technology, or both. In such a view, the good patient must be a good fighter in an ongoing war, a smart consumer with the superior taste to select a premiere hospital, and a brave citizen of science who consents to try the latest therapies, even when the success rates of those therapies are depressingly low. The good patient wears makeup and wigs, the drag of health, to conceal what is bruised, scarred, leaking, and decayed. The good patient finds in the experience of cancer not repulsion but redemption; not despair, but progress. The good patient does not die—because dying would not only be a lack of ambition, an ugly failure of will, but a significant loss of their investment.

Cancer is becoming less a singular event than a chronic condition, a product of modern life whose ongoing cycle of reoccurrence creates cash cow “forever patients,” whose survival converts into billions, a steady return ad infinitum.

On my visits to Zion, I felt convinced of the power in treating the whole person, and yet repelled by the corporate slickness and cult-like air of a place that had patients paying not just for treatment but for a new identity: cancer fighter. “Survival, in fact, begins at the point of diagnosis,” Mullan wrote in his seminal essay, “because that is the time when patients are forced to confront their own mortality and begin to make adjustments that will be part of their immediate and to some extent, long-term future.” To be a survivor, then, is to exist within a particular trajectory, bound by a particular set of narrative expectations. It is to submit to the linearity of Christian, capitalist time, a hero’s journey oriented toward the idea of a magical futurity: here-and-now endurance for an upgraded tomorrow. It’s a story that rests on the notion that pain is somehow purposeful and all suffering redemptive, a story that CTCA has commodified to great reward.

The irony of all this, of course, is that cancer is in part a disease of American greed. As Jain writes in Malignant:

Each of America’s iconic industries—agriculture, oil and gas, cosmetics, pesticides, tobacco, medicine, construction, military—has undoubtedly led to tens of millions of cancer deaths. The unique way in which cancer presents, decades after exposure, make 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.

When cancer is cast as a depoliticized problem of self-management—caused by individual lifestyle choices, doomed genetics, or a failure to seek preventive care—its environmental and structural origins fade into the background. What’s missing from the popular cancer story of individual triumph are the more than eighty thousand chemicals circulating in the United States—in our furniture, makeup, cleaners, toys, and food—which are often dumped by the same companies that produce drugs to cure us. Capitalist ogres like the Kochs pour money into cancer “philanthropy,” funding fancy research centers, while dismantling environmental protections and making entire towns sick with toxic waste. Though these companies may promote cancer awareness months and races for the cure, “defeating” cancer would be extremely unprofitable. And as we live longer, pollute more, and unleash an ever-growing array of expensive new drugs into the marketplace, cancer is becoming less a singular event than a chronic condition, a product of modern life whose ongoing cycle of reoccurrence creates cash cow “forever patients,” whose survival converts into billions, a steady return ad infinitum.

In a hotel room in Zion, I watched videos from Richard and Stacie Stephenson’s YouTube channel: clips of speeches from galas for their charity, Gateway for Cancer Research. The videos were small portals into fantasy worlds, heavily sequined and glittering theme parties, in which the couple spoke about their work in baroque, spiritualized language. Cancer was an “evil” and “dreaded disease” which they were “literally waging war against.” They spoke about the “moral code” and their role as servants; how theirs was not a business but a calling. They spoke about their modest Midwestern roots and repeated, many times over, faces shining with Botoxed dewiness under the hardness of the lights, the word “hope.” “There is no better word than hope. There’s no place like hope, no place like hope,” Richard says in one video. I paused, rewound, pressed play again, staring into the face I had seen pictured so often in the hospital: the chairman and founder, the rebel and maverick in every way. “There’s ample reason for hope,” Stephenson concludes, “Easy to give, priceless to receive.”