Skip to content

After the War on Cancer

Awareness campaigns have made cancer more treatable—but not more affordable

From Whispers to Shouts: The Ways We Talk About Cancer by Elaine Schattner. Columbia University Press, 376 pages. 2023.

In February, an eighteen-thousand-ton train carrying industrial chemicals derailed near East Palestine, Ohio, spilling more than a hundred thousand gallons of pollutants that most of us are lucky enough to have no idea about, like vinyl chloride. A few days later, officials decided to burn several tanks of toxic cargo to stop them from exploding. The column of black smoke was visible for miles.

Since then, locals have reported symptoms like rashes and coughing; some have been diagnosed with chemical bronchitis. As of March 1, the EPA said that air quality tests from 578 homes showed no problems, and that the water is actually great to drink. (Officials quickly completed the ritual of ingesting what Tarence Ray calls the “Devil’s Milkshake.”) Yet outside experts argue that the agency has been slow to act on testing for dioxins, a toxic byproduct of burning vinyl chloride. “Everything I put in my mouth tastes like a copper penny, from water to toothpaste to pasta and bread,” one resident told The Guardian. That’s probably fine, right?

These are urgent health concerns, interfering with daily life. Beyond that, there is the awful long-term prospect that the spill may cause cancer in local residents. Vinyl chloride is particularly prone to causing liver cancer, which has an overall five-year survival rate of about 20 percent, but also “brain and lung cancers, lymphoma, and leukemia,” according to the National Cancer Institute. It could take up to twenty years or even longer for cancers related to the spill to materialize. Residents are facing a metaphorical “looming hazardous cloud, not knowing what it’s going to do to our future, hanging over our heads,” as a woman who lives a few hundred yards from the crash site put it.

The question of why one individual gets cancer and another doesn’t is often not answerable, at least not confidently.

The plume of Satanic smoke in East Palestine was also a reminder for the rest of the country that carcinogenic chemicals are not so far away from our own daily lives. First, yes, apparently they are being choo-choo’d along our rails all the time, mere feet from schools and rivers. They are also in our furniture, our toilet paper, our cleaning products. Residents of California are familiar with the hilarious Proposition 65 warnings, which tell you that basically everything you touch is known to the state to cause cancer. As always, the onus is on the consumer, not the producer, to find a solution. Choose the right product; remember the names of more than 250 chemicals that might hurt you in years or decades; comb the ingredients list of everything you buy. There is a balance to be struck between being aware of the risks we’re taking and being paralyzed by how hard it is to avoid carcinogens. We know it’s bad to live downstream from a chemical spill. What about driving, eating processed food, or working at night? Could you avoid all that if you tried? And if you might get cancer from some unknown exposure anyway, what’s the point of all that virtuous avoidance?

The question of why one individual gets cancer and another doesn’t is often not answerable, at least not confidently. But for years, that didn’t stop ordinary people and doctors alike from ostracizing cancer patients or prematurely consigning them to death. A new book by Elaine Schattner, From Whispers to Shouts: The Ways We Talk About Cancer, explores why cancer patients, once shunned and stigmatized, are now able to talk publicly about their illness. It’s a powerfully illuminating narrative of how things changed over the last century or so, both thorough and compelling. But for all its insight about the ways that increased awareness of cancer paved the way for more research and better prognoses, the book sidesteps the question of why this rhetorical shift was not accompanied by making cancer treatment affordable and available to all. No matter how kindly we view the sick, or how much we champion their cause, they still have to pay. And in a country without universal health care, paying might very well leave a cancer patient or their family bankrupt.

Cancer holds a uniquely terrifying place in our imaginations in part because, for most of human history, it was a death sentence. Imagine the horrified Ancient Greeks who named it karkinoma, after the crab, because the disease appeared as a lump with veins stretching out from all sides, like a crab’s legs. Perhaps those with karkinoma were the lucky ones; other cancers would have just killed people slowly and invisibly, from the inside. The earliest writing yet discovered about cancer, from ancient Egypt, reflects this reality: “There is no treatment.”

This, of course, is no longer true. Though cancer kills more than six hundred thousand people in the United States per year, the remarkable progress of cancer treatment slows or eradicates cancer in millions more. Oncologists can now identify individual genes that indicate a person will respond to immunotherapy treatment. Cancer is still frightening, and can still be brutally painful and deadly, but a diagnosis is not what it once was.

There’s a slight paradox to this progress: it was only possible to make cancer less of a death sentence because we stopped viewing it as one, leading to increased research and, eventually, the “War on Cancer” of the 1970s. From Whispers to Shouts explores how this happened over the course of the twentieth century. Not all that long ago, cancer was not just seen as tragically incurable; it was something to be ashamed of and hidden from friends and family. That stigma still persists in some ways, but as Schattner shows, patients are now much more willing and able to share their diagnoses, news of their treatments, and their fears with friends, their employers, or even the whole world. Many patients have no choice but to share the play-by-play, turning to sites like GoFundMe for any hope of funding their treatment.

It makes for remarkable reading, from the vantage point of 2023, how hard cancer advocates had to work to convince doctors and the public that it was worth trying to figure out how to treat, prevent, or cure cancer. After Dr. James Marion Sims founded the Woman’s Hospital in New York in 1855, a rare hospital that would accept cancer sufferers, Schattner reports that it received complaints that cancer patients were “causing great discomfort and danger to the other patients in the ward.” The hospital’s leadership then voted to deny admission for cancer patients because they were “worried that tumors might be infectious and spread from one patient to the next.” No one wanted to be near “the dreaded disease,” Schattner writes. Their cases were too sad, their pain too agonizing, their deaths too imminent.

It wasn’t just a superstitious or squeamish public, but the medical profession, too. When Dr. J. Henry Carstens of Detroit proposed holding an educational “cancer day” in 1913, his colleagues rejected the idea. One cancer doctor and advocate summed up the opposition from other doctors in 1914: “people may be frightened by being enlightened as to the symptoms of the various forms of cancer and further that those with vivid imaginations will think they have cancer.” The diagnosis was so terrible that all anyone could do was look away, with horrible consequences for its victims.

It was only through tireless public advocacy and organizing, spearheaded by the American Society for the Control of Cancer (later the American Cancer Society) and its largely female volunteers, that the public’s conception of cancer began to change. Advocates held “cancer days”—one of the first in Scranton, where Schattner says the society “encouraged local physicians to bring patients with possible malignancy for evaluation”—which quickly grew into “cancer weeks.” Even these early efforts were not too dissimilar from modern PR campaigns, with coordinated releases of films, magazine stories, and educational materials. The term “awareness” in relation to cancer was first used in 1922, by the chair of the ASCC’s publicity committee. The organization’s Women’s Field Army also had “military style” tactics, Schattner writes, and deployed the idea of a “war” against cancer—in particular, one fought by and for women—that’s so familiar now.

An early poster for the ASCC. | National Cancer Institute

With cancer becoming less feared, new preventative measures—from routine breast examinations to seeing a doctor about lumps at all—began to spread. Big companies and institutions, from MetLife to the U.S. Postal Service, helped promote cancer awareness. Of course, the reputational boost from funding cancer research was a happy side-benefit to aiding the public interest. Some companies who were profiting off of cancer-causing activities, like the DuPont chemical company, financed early cancer research; later, they would downplay the results of their own research about the impact of forever chemicals that they created.

Still, the benefits of increased awareness snowballed: the less afraid and more educated the public became, the more likely it was for someone to live some or even a long time after they got cancer, or for a person to know someone whose cancer was caught and treated. This made the advocates appear even more correct. High-profile cancer sufferers, from Babe Ruth and Steve McQueen to Terry Fox, the Canadian who ran across the country to raise funds for cancer research, helped the public understand the reality of cancer: both what the disease really looked like, and the availability of treatment. In 1945, the Sloan Kettering Institute for Cancer Research, still a major cancer center, ran radio ads, announcing that “‘Hope’ is replacing ‘Despair’ in the treatment of cancer—for progress is being made toward control of this dread disease.” That was true then, and it’s much truer now, when the five-year overall survival rate for all cancers combined is nearly 70 percent.

What comes after awareness? The final section of From Whispers to Shouts deals with the present and future of cancer. Schattner emphasizes the value of education in helping people understand cancer and treatment options. A breast cancer survivor herself, she writes that modern, advanced treatment shouldn’t be “a luxury.” She argues that “we provide best available remedies to individuals with all kinds of illnesses—diabetes, high blood pressure, depression, HIV and AIDS, arthritis, epilepsy, most everything for which treatments are available”; cancer should be no different.

It’s true that the cost of cancer medications outstrips the cost of many other medications, and that treatment is particularly financially intensive for patients. But many Americans with the other conditions Schattner names would be surprised to learn that they have access to the “best available remedies.” As a former practicing physician, Schattner must know that diabetics die from trying to ration their insulin, and that patients are still often forced to pay for HIV prevention medications that their insurance is supposed to cover in full. A complete understanding of what American health care does to cancer patients requires acknowledging that the problem is not just affecting them; the system is sick at its roots.

It’s a system predicated on the notion that every individual is ultimately responsible for their own health and wellbeing, and therefore also the costs of maintaining that health. We have public programs that cover roughly 35 percent of the country, mainly Medicare for the old and Medicaid for the poor, plus some more puzzlingly specific categories of those allowed help—you can sometimes qualify for Medicare on the basis of having End-Stage Renal Disease or ALS, for example, but never cancer or diabetes. These programs can be hard to access and navigate, however. Medicare can still have extremely high costs, and Medicaid patients are kicked off their plans for administrative bullshit all the time. There are no guarantees.

The other two-thirds with private insurance can usually expect to sign a piece of paper confirming they will pay whatever their insurance doesn’t, no matter how fraudulent the charges, when they seek medical care. In 2019, the Washington Post reported that a woman in Virginia who’d been sued by the  University of Virginia hospital for unpaid medical bills fought unsuccessfully to relieve her debt of $23,849, incurred when she was “admitted with newly diagnosed uterine cancer, bleeding and in pain.” According to journalists Jay Hancock and Elizabeth Lucas, she argued that the “open-ended payment agreement” she signed was “so vague as to be unenforceable.” The judge disagreed, ruling that she had “the ability to decline surgery” on her bleeding and cancerous womb if she didn’t want to pay what the hospital asked for—an amount, of course, that she would have no way of knowing until after she was discharged. An educational poster from 1936 featured in From Whispers to Shouts reads: “Beware the Cancer Quack: A Reputable Physician Does Not . . . Demand Advance Payment.” But demanding payment in advance is “very common, if not the norm” in the United States now, among reputable and disreputable physicians alike.

A Works Progress Administration Federal Art Project poster by Max Plattner. | Library of Congress

That’s one way to run a health care system, sure. It results, relative to other high-income countries, in “the lowest life expectancy at birth, the highest death rates for avoidable or treatable conditions, the highest maternal and infant mortality, and among the highest suicide rates” (yet also the highest health spending per capita by far), according to The Commonwealth Fund. It results in people losing their homes from paying for their health care costs, or people avoiding the doctor until it’s far too late: for those with no insurance, preventative care is out of reach. But the system does allow us to maintain the fantasy that our health and our future are within our control, no matter what shitty circumstances we were born into, if we just do everything right, every day. This is the lie at the heart of American individualism.

What does this assumption of personal responsibility for health mean for cancer specifically, a disease that, for millennia, seemed to strike as if for no reason and can still occur in anyone, even the healthiest among us? As Schattner writes, the “perpetual question” for cancer patients is “Why me?” She notes that this question of fate is a “heated scientific argument” in the cancer research community. Johns Hopkins scientists made a splash in 2015 by claiming most cancers are the result of random genetic “typos,” leading many outlets to report that “most” cancers are due to “bad luck.” This was an incorrect interpretation of a flawed study, argued Ed Yong in 2017, and the framing threatened to confuse the public, who might think they have no control over their futures. The exact role of chance versus other factors remains unexplained, Yong wrote, and for individual cancer patients, “that fundamental, heartbreaking, existential question—Why me?—has no answer.”

The perceived unfairness of cancer, which separates it from perceptions of other top killers like heart disease and Type 2 diabetes, may partly explain why cancer became such a popular target for Raising Awareness. Ideas about cancer not long in our past—that it is worsened by mindset, that it is strictly hereditary, that it is a mark of shame—have been replaced by ubiquitous pink ribbons and Fuck Cancer merch. We are all conscripts in the war against cancer at some point, through donations, fun runs, or perhaps through reading about the pink drill bit created by an oilfield services company—to teach you that breast cancer exists, not that you should look into the rates of cancer among oil workers. But this distinction does nothing to make cancer care more affordable. Cancer patients struggle with medical bills, lost wages, and debt. New cancer drugs can cost hundreds of thousands of dollars per year. It’s much better, of course, that stigma against cancer patients is less common than it was a hundred years ago, but we are still so very far from shedding the urge to blame people for illness overall.

As cancer gets more conquerable, Schattner writes optimistically, it will be managed “as a chronic disease, not necessarily curable but treatable, like other conditions, ordinary. It will no longer be so feared.” This is less comforting when you remember how America treats its other chronic diseases. We have the highest rate of people with multiple chronic conditions among rich nations. At the same time, our disability system is a cruel joke: the Social Security Administration reports a backlog of nearly a million disability benefits applications, while applicants whose cases aren’t obviously poised to win will struggle to find a lawyer willing to help them. Discrimination against the chronically ill is rampant, and invisible illness, like migraine, is particularly stigmatized and poorly understood. Most important, neither cancer patients nor diabetics nor stroke victims can pay for their drugs with cultural acceptance.

When my maternal grandmother was diagnosed with breast and lung cancer in 2003, the options were chemotherapy, radiotherapy, or surgery. She died four years later, and her decline was painful. I still remember her laughs that turned into a hacking cough; the day I spent with her at the hospital, when an oncologist drained an appalling amount of fluid from her chest; the fact I was not there for her last days.

We are all conscripts in the war against cancer at some point.

Things are different now. In 2018, my mother began experiencing breathlessness and was diagnosed with lung cancer. It was stage 4. I thought that was it; that once you were breathless from lung cancer, you were pretty much done for. But for the next three years, her health was largely unrecognizable as that of a lung cancer patient because she was receiving immunotherapy. When I visited her, we could go for long walks in the countryside, through miles and miles of Cotswold hills. She once went straight from a cancer drug infusion to a protest in London. She was not hacking up blood on the bathroom floor like Walter White. And yet she still died, faster than my grandmother did, three years after diagnosis—not from the tumor in her lung, which shrank to nothing soon after she started immunotherapy, but from a stubbornly cancerous lymph node that caused blood clots.

That’s just cancer for you. Cancer is a crapshoot, a fucker, a worst nightmare. It can be less of those things now than it was ten or twenty years ago—though you still need some luck to survive, whether it’s in your type of cancer, when it’s caught, or whether you can afford the treatment and navigate the administrative thicket between you and the care you need. We have made enormous progress both in our ability to treat cancer, and our ability to face up to it. It is thanks to all this that, finally, we can look cancer patients in the eye and tell them, “You are not alone. We’re going to help you beat this. Your copay is $3,000.”