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My great-uncle was twenty-nine years old. I often wonder what it must have been like for my great-grandfather, having trained as a doctor, to be unable to save his own son from disease. We are powerful enough to light the world at night, to artificially refrigerate food, to leave Earth’s atmosphere and orbit it from outer space. But we cannot save those we love from suffering. This is the story of human history as I understand it—the story of an organism that can do so much, but cannot do what it most wants.
Still, over a million people died of tuberculosis in 2023. That year, in fact, more people died of TB than died of malaria, typhoid, and war combined.
Covid-19 displaced tuberculosis as the world’s deadliest infectious disease from 2020 through 2022, but in 2023, TB regained the status it has held for most of what we know of human history. Killing 1,250,000 people, TB once again became our deadliest infection. What’s different now from 1804 or 1904 is that tuberculosis is curable, and has been since the mid-1950s. We know how to live in a world without tuberculosis. But we choose not to live in that world.
tuberculosis has come to be seen as a disease of poverty, an illness that walks the trails of injustice and inequity that we blazed for it. The world we share is a product of all the worlds we used to share. For me at least, the history and present of tuberculosis reveal the folly and brilliance and cruelty and compassion of humans.
I knew almost nothing about TB. To me, it was a disease of history—something that killed depressive nineteenth-century poets, not present-tense humans. But as a friend once told me, “Nothing is so privileged as thinking history belongs to the past.”
Even after New Mexico became a U.S. territory in 1848, it was regarded with suspicion by many white Americans. After all, the majority of people living in the territory were Indigenous people or people who spoke Spanish as their first language. And so despite New Mexico having the institutions needed for statehood, a large enough population, and a strong majority of its voters seeking statehood, the U.S. Congress repeatedly turned down New Mexico’s attempts to fully enter the Union. In order to please Congress, New Mexican officials realized they needed to recruit a larger white and
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All three were nineteen and connected with the Black Hand, a revolutionary group led by Serbian Army officers who wanted to liberate Serbia from the Austro-Hungarian Empire. Cabrinovic, Grabez, and Princip were all seriously ill with tuberculosis. They knew they would die soon. As John Simkin put it, “They were therefore willing to give their life for what they believed was a great cause.”
The mission was an unmitigated catastrophe. Three of the men (the three without tuberculosis!) ended up unable or unwilling to act, but the boys from Belgrade were different. Cabrinovic was the first to see the archduke on the parade route; he threw a bomb toward Franz Ferdinand’s car but he missed, instead injuring several people in another car. Cabrinovic proceeded to take his cyanide pill, which contained too little cyanide to actually kill him, and then jump into a river where he hoped to drown, except the river ended up only being four inches deep, so he was quickly captured.
Looking at history through any single lens creates distortions, because history is too complex for any one way of looking to suffice.
The railroads, built during colonial rule, did not connect people to each other. They connected the mineral-rich areas of Sierra Leone to the coast of Sierra Leone, where those minerals could be exported.
In general, colonial infrastructure was not built to strengthen communities; it was built to deplete them.
As Virginia Woolf wrote in On Being Ill, considering “what wastes and deserts of the soul a slight attack of influenza brings to light…it becomes strange indeed that illness has not taken its place with love, battle, and jealousy among the prime themes of literature.” Some of this may be due to the nature of pain itself. As Barbara Duden has written, “Pain is in the body. It leaves no trace for the historian, unless complaints about it are recorded.” But I wonder if we also ignore illness because of our bias toward agency and control. We would like to imagine that we captain the ships of our
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But history, alas, is not merely a record of what we do, but also a record of what is done to us.
TB was one of the few infectious diseases present in both the Americas and Afroeurasia before the Columbian Exchange began in 1492; archaeological evidence indicates that TB was in the Americas at least two thousand years ago,[*1] and it has been present in China for at least five thousand years. But recent genetic evidence indicates that the story might go back much further—our species is perhaps three hundred thousand years old, but it seems that other species of hominids were being infected with consumption-like illnesses three million years ago.
Tuberculosis is, on many levels, a weird disease. Infections can lie dormant for decades, or for a lifetime. The illness has an unpredictable course—it may kill its victims within a few months, or over many years, or not at all. Treatment can appear effective only for the illness to come roaring back for reasons we still don’t fully understand.
and how we imagine leprosy or OCD or tuberculosis matters. In a place where the formal healthcare system is not particularly effective at treating an illness, it is easy to imagine how more trusted spaces and people—like churches and faith healers—can be a better bet than doctors and hospitals.
Something like 90 percent of people die of disease, a phenomenon so entrenched in human life that we attribute most such deaths to “natural causes.” Many of us feel a certain relief when we learn that someone has died “naturally,” especially when the death occurs at what we think of as an appropriate age.
“Death is natural. Children dying is natural. None of us actually wants to live in a natural world.” Treating disease—whether through herbs or magic or drugs—is unnatural. No other animals do it, at least not with anything approaching our sophistication.
About half of all humans ever born died before the age of five.
Imagining someone as more than human does much the same work as imagining them as less than human: Either way, the ill are treated as fundamentally other because the social order is frightened by what their frailty reveals about everyone else’s.
It’s hard to overstate how profound the link between consumption and creative genius was in eighteenth- and nineteenth-century Europe and the U.S.[*] When TB rates declined in the U.S. toward the end of the nineteenth century, some physicians worried it would harm the quality of American literature, with one writing, “By way of compensation for good health we may lack certain cultural joys.”
Patients with active tuberculosis typically become pale and thin with rosy cheeks and wide sunken eyes due to the low blood oxygenation and fevers that often accompany the disease, and these all became signals of beauty and value in Europe and the United States.
Fading Away, a combination print by Henry Peach Robinson, 1858.
Around the time of this photograph, some women applied belladonna to their eyelids, albeit in minimally toxic amounts, to dilate their pupils so they’d have that wide-eyed consumptive look.[*1] Magazines also offered instructions for how to apply red paint to the lips and cheeks to capture the hectic glow of consumptive fevers. I probably do not need to point out that these standards of beauty are still informing what is considered to be feminine beauty in much of the world.
I came across a comment on a video about tuberculosis recently in which a woman named Jil wrote, “As a fat person, I used to wish for a wasting disease like tuberculosis. It’s…it’s messed up.” Dozens of people replied to that comment with their own experiences of being complimented for weight loss associated with life-threatening illness, or their fantasies of tapeworms and other illnesses that would shrink their bodies. The idea of becoming sick in order to look healthy or beautiful speaks to how profoundly consumptive beauty ideals still shape the world we share.
As Snowden writes, “In the United States, the prevailing wisdom was that African Americans contracted a different disease. The disinclination even to give it a name speaks volumes with regard to the prevailing racial hierarchy and the lack of access to medical care by people of color.” This phenomenon extended to all colonial empires. Many European colonialists believed that TB did not exist in South Asia or Africa, even though physicians working in colonized communities knew otherwise.
What we see here is yet another example of how our understandings of tuberculosis are shaped by social forces—which in turn shape how and where tuberculosis is able to thrive.
Toward the end of the nineteenth century, consumption began to decline in northern Europe and the U.S. as well. In the process, romanticization of the disease was abandoned. The decline happened in part because, as quality of life rose for the wealthy and the emerging middle class, they were less likely to live or work in crowded spaces where consumption can flourish. Increasingly, it was the poor who seemed to get sick, and so people began to turn their eyes away from “the languorous, fainting young women and their romantic lovers,” wrote René and Jean Dubos.
The rise of cities and sweatshops meant crowded markets, factories, and streets, which proved an ideal breeding ground for TB. And so just as Britain was ground zero for the Industrial Revolution, it was ground zero for the explosion of tuberculosis. Similar outbreaks have occurred in the twentieth century in India and Nigeria as they industrialized.
As late as 1880, white American physicians still argued that consumption did not occur among Black Americans, who, it was claimed, lacked the intellectual superiority and calm temperament to be affected by the White Plague. But after Koch identified Mycobacterium tuberculosis in 1882, all that changed. Racialized medicine no longer maintained that high rates of consumption among white people was a sign of white superiority; instead, racialized medicine maintained that high rates of consumption among Black people was a sign of white superiority.
Black people were not more susceptible to TB because of factors inherent to race; they were more susceptible to tuberculosis because of racism. Because of racism, Black Americans were more likely to live in crowded housing, an important risk factor for TB. Because of racism, Black Americans were more likely to be malnourished, another risk factor. Because of racism, Black Americans were more likely to experience intense stress, and they were less likely to be able to access healthcare.
This brings us back to an important facet of understanding human responses to illness—stigma and the ethical narratives we construct around illness. My dad had cancer twice when I was a kid, and I saw some of this up close. People said he had cancer because his parents had smoked, or because he didn’t exercise enough, or because he didn’t eat broccoli, or whatever. And it’s true that secondhand smoke and poor diet are risk factors for cancer, but it is also true that the vast majority of people whose parents smoked do not get cancer when they are a thirty-two-year-old father of two toddlers.
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TB expert Dr. Jennifer Furin once had a patient weep upon learning she had tuberculosis rather than lung cancer. “But we can treat this,” Dr. Furin told her patient. “This is curable.” Still, the young woman wished she’d been diagnosed with cancer because it would have brought less shame to her family.
When I visit with TB survivors, almost all of them cite stigma as the greatest challenge. In much of the world, it’s common for children diagnosed with TB to be dropped off at a hospital or treatment center and then abandoned by their families.
The sanatorium became a fixture in the U.S. As Sheila Rothman writes in Living in the Shadow of Death, “By 1900, 34 sanatoriums with 4,485 beds had been opened in the United States. Twenty-five years later, there were 536 sanatoriums with 673,338 beds.” At the height of the sanatorium, there were nearly as many beds to treat tuberculosis patients as there were hospital beds for all other illnesses combined.
how in the years after formerly colonized nations achieved independence, when the recently created World Bank offered loans to poor countries, the Bank’s policies profoundly shaped the healthcare systems in those countries. Restrictions on how much governments could spend and how they could spend it led to tragic underfunding of healthcare and education systems. “By the late 1980s,” Mukherjee tells us, “health budgets in many African and Asian countries were less than $5 per person per year.”
For many people living with TB, daily travel to a clinic proves complicated or impossible, especially when they are very unwell, but such is the fear of antibiotic resistance and the distrust of patients that global health officials have long deemed DOTS necessary. When I asked TB expert Dr. Jennifer Furin about this protocol and forcing people to be visually observed taking their pills each day, she told me, “I know of no other field of medicine where therapy is based so completely on lack of trust toward patients.”
When looking at the larger costs—the cost of the ineffective pills, the cost of potentially further spreading drug-resistant TB, the cost of hospitalizing a kid who should’ve been in school, and all the other costs of not getting kids access to proper testing—GeneXpert tests should be in every clinic in every country with a high burden of TB. But the obsession with cost-effectiveness often ends at, “Can we get this disease diagnosed more cheaply?” rather than a broader consideration of the human costs.
A 2024 study commissioned by the WHO found that every dollar spent on tuberculosis care generates around thirty-nine dollars in benefit by reducing the number (and expense) of future TB cases,
Cancer care even within the U.S. remains wildly inequitable and littered with all manner of price gouging, but no one questioned whether treating my brother’s lymphoma was “cost-effective,” even though it cost a hundred times more than it would’ve to cure Henry’s tuberculosis. My brother is my oldest friend, my closest collaborator, and his work has been transformative in many lives. I would never accept a world where Hank might be told, “I’m sorry, but while your cancer has a 92 percent cure rate when treated properly, there just aren’t adequate resources in the world to make that treatment
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Millions of lives have been saved—and tuberculosis deaths among those living with HIV have declined dramatically in the decades since. But so many were lost between the mid-1980s, when activists first began shouting that the commingling of HIV and TB would lead to catastrophe, and the mid-2000s, when HIV treatment finally became widely (but not universally) available. Tens of millions of people died of tuberculosis in those years. In fact, between 1985 and 2005, roughly as many people died of tuberculosis as in World Wars I and II combined.
Tuberculosis is so often, and in so many ways, a disease of vicious cycles: It’s an illness of poverty that worsens poverty. It’s an illness that worsens other illnesses—from HIV to diabetes. It’s an illness of weak healthcare systems that weakens healthcare systems. It’s an illness of malnutrition that worsens malnutrition. And it’s an illness of the stigmatized that worsens stigmatization. In the face of all this, it’s easy to despair. TB doesn’t just flow through the meandering river of injustice; TB broadens and deepens that river.
child born in Sierra Leone is over one hundred times as likely to die of tuberculosis than a child born in the United States. This difference, as Dr. Joia Mukherjee writes, is “not caused by genetics, biology, or culture. Health inequities are caused by poverty, racism, lack of medical care, and other social forces.”
everyone emphasized the cost of treating drug-resistant tuberculosis, but “failure to diagnose and treat MDR-TB is what is really costly.” Every uncured case of MDR-TB was an opportunity for the disease to spread further and to develop further resistance, an opportunity for the disease to cause yet more suffering. And failing to invest public money in MDR-TB treatment didn’t keep people from seeking it on their own. Often, desperate families would mortgage their homes or sell their belongings to buy second-line antibiotics from private doctors, but then those families often couldn’t afford
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Ultimately, she was in treatment for tuberculosis for three years and eight months—during which time she took between twenty thousand and thirty thousand pills. The treatment cost her years of life and her hearing, but she was finally cured.
And so the work of TB caregivers, survivors, and activists in Peru in the 1990s helped Phumeza Tisile survive TB, and her work in turn lowered the price of bedaquiline, which will help many others survive TB. This virtuous cycle has dramatically expanded access to treatment by lowering its cost: MDR-TB was labeled as too expensive to treat in the 1990s, when it cost over $15,000 per patient. Organizations like PIH were able to drive that cost down to $1,500 by the late 1990s. Thanks to the efforts to lower the price of bedaquiline, that price has dropped further. In 2023, the endTB
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It reminded me that when we know about suffering, when we are proximal to it, we are capable of extraordinary generosity. We can do and be so much for each other—but only when we see one another in our full humanity, not as statistics or problems, but as people who deserve to be alive in the world. —
Yes, illness is a breakdown, failure, or invasion of the body treated by medical professionals with drugs, surgeries, and other interventions. But it is also a breakdown and failure of our social order, an invasion of injustice. The “social determinants of health”—food insecurity, systemic marginalization based on race or other identities, unequal access to education, inadequate supplies of clean water, and so on—cannot be viewed independently of the “healthcare system,” because they are essential facets of healthcare.
once asked a tuberculosis doctor, KJ Seung: Of the 1,300,000 people who will die of TB this year, how many would survive if they had access to the kind of healthcare I have? After all, while TB is often curable now, it remains a very difficult disease to treat, especially in cases of extensive drug resistance. And people in wealthy countries do continue to die of TB, albeit rarely—in the U.S., around five hundred people will die of TB this year. In Japan, over a thousand. “How many would die if everyone could access good healthcare?” he asked me, as if he seemed confused by my question. “Yes,”
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It is difficult to imagine eliminating tuberculosis entirely. The disease has many animal reservoirs, and because a quarter of all people living are infected with it, the total elimination of TB is a distant dream. But we could live in a world where no one dies of TB.
