Everything Is Tuberculosis: The History and Persistence of Our Deadliest Infection

by John Green

Anyone can get tuberculosis—in fact, between one-quarter and one-third of all living humans have been infected with it. In most people, the infection will lie dormant for a lifetime. But up to 10 percent of the infected will eventually become sick, a phenomenon we call “active TB.” People are especially likely to develop active TB if they have a weakened immune system due to other health problems like diabetes, HIV infection, or malnutrition. In fact, of the ten million people who became sick with TB in 2023, over five million also experienced malnutrition. And because the disease spreads especially well in crowded living and working conditions like slums and poorly ventilated factories, 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.

But as a friend once told me, “Nothing is so privileged as thinking history belongs to the past.”

Henry told me that the injections burned like a fire under his skin, and that the medications had many side effects, but the worst one was hunger. Active tuberculosis severely suppresses appetite, causing stomachaches and generally inhibiting the ability to eat, and once treatment commences and the infection begins to lessen, hunger roars back, which is a good sign—but only if one has enough to eat.

Marie told me she dreamed night and day of eating as she recovered her health, that she thought of making mud soup and eating sticks. She thought about how crunchy they would be, imagining them as overstuffed with rich, soft nutrients inside. She could not think of anything but food, all the time.

Some people became so hungry, she told me, that they left the hospital and stopped taking their medication, which increased the likelihood that the TB bacteria within them would continue multiplying, eventually developing resistance to first-line treatments. But they simply could not live with the hunger.

After I returned from Lakka to my home in Indianapolis, I began reading about the history of tuberculosis, which seemed to pop up everywhere from fashion to warfare to human geography, and I found that I simply could not shut up about the disease. Someone would mention New Mexico, and I’d jump in: “Did you know that New Mexico became a state partly because of tuberculosis?” Or, if a conversation turned to World War I, I’d respond, “Did you know that tuberculosis sorta kinda but not really caused World War I?” Or perhaps at a neighborhood Halloween party, I’d confront a ten-year-old dressed as a cowboy: “Did you know tuberculosis helped give us the cowboy hat?”

It is common to say that Sierra Leone is a poor country, but this is not the case. It is an exceptionally rich country with vast wealth in metal ores and especially in diamonds, which during centuries of colonialism encrusted many a British crown. After achieving independence in 1961, the new government struggled to transition away from this extraction-based economy. This was in part because systems to mine and export diamonds and minerals were more mature and robust than any other economic sector, and in part because independence didn’t change the fact that many of the most valuable assets in Sierra Leone were (and still are) foreign-owned. Although the economy grew and life expectancy increased after independence, the country remained deeply impoverished.

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. The British Empire was in the business of resource extraction, and the systems built to support that business were resource-extraction systems. Were there schools? A few, to train servants of the empire. Were there clinics? A few, to heal servants of the empire. But the empire’s role in Sierra Leone was primarily to take Sierra Leone’s wealth, as quickly and efficiently as possible, out of Sierra Leone. In the Global North, we still sometimes hear about the benefits of colonialism, how it brought roads and hospitals and schools to colonized regions, but this perspective is not supported by strong evidence.

The slave trade directly caused millions of deaths, shut down trade routes, and upended social orders. Communities were devastated, not only because so many people were forced from their land and families, but also because most forms of economic activity—from traveling with goods to selling in a market—came with the risk of being kidnapped.

Henry, the boy I met at Lakka Hospital, had a Krio father—meaning that Henry’s roots in the United States may stretch back much further than my own. (My people have only been in America since the late nineteenth century.)

Sometimes, folks try to explain Sierra Leone’s impoverishment through the lens of pure physical geography—West Africa’s rivers aren’t long enough or navigable enough; there aren’t enough good ports; the “resource curse” of mineral wealth causes economies to develop with a focus on extraction instead of investment; etc. But these explanations overlook history. Until the fifteenth century, Europeans generally imagined West Africans to be rich and powerful. (Indeed, the wealthiest individual in human history was likely Mansa Musa, the fourteenth-century ruler of West Africa’s Malian empire.) There is nothing inevitable or natural about the impoverishment of countries like Sierra Leone.

It is a strange fact of human history that we tend to focus so little on disease. In my college survey course about the history of humans, I learned of wars and empires and trade routes, but I heard precious little of microbes, even though illness is a defining feature of human life. 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 lives, that human history is largely the story of human choice. Perhaps this is why rumors have swirled for millennia that Alexander the Great died of poisoning even though he almost certainly died of typhoid or malaria. We simply don’t want a world where even the most powerful emperor can be felled by mere infection. But history, alas, is not merely a record of what we do, but also a record of what is done to us.

All these names—whether they focus on the destruction of the bodily palace or physical disappearance—reference an important facet of tuberculosis, which is weight loss and wasting caused by lack of appetite and extreme abdominal pain. This is also why TB was widely known as “consumption” until the twentieth century—it seemed to be a disease that consumed the very body, shrinking and shriveling it. Over eight hundred years ago, Daoist priests began referring to the illness as shīzhài, or “corpse disease,” because the illness transforms a living being into a cadaver.

Because TB infects and kills so slowly, it does not resemble a plague that sweeps through a community, where one family member gets sick and everyone else in the household is sick a few days later. It also differs from an illness like cholera that affects mostly the destitute. And it wasn’t like a cancer or heart disease that affects one person but rarely seems to spread. At times, consumption seemed to strike whole families; at other times, it seemed to strike randomly. (Louis XIII died of TB, for instance, but his spouse and children did not.) Precisely because consumption was so fundamentally different from other infections, classical understandings of the disease varied widely.

Global medical treatment for TB has ranged from rubbing buzzard fat on the chest to ingesting human milk, from animal sacrifice to acupuncture. Identifying effective treatment was made more difficult by the fact that people sometimes seemed to recover only to get sick again, or seemed to get sick after treatment only to recover later. Consumption made very little sense. And at least in that respect, it hasn’t changed much. 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.

Much of this oddness is related to the infectious agent itself. Right now, over two billion people have been infected with a microorganism called Mycobacterium tuberculosis. This speaks to just how infectious tuberculosis can be: The average untreated case of active tuberculosis will spread the infection to between ten and fifteen people per year.[*2] One might acquire TB on a crowded city bus, or from lying next to a sick person at night, or working near them. Less commonly, we can also contract tuberculosis from other mammals—by eating infected seal meat, or by drinking raw milk from infected cows. M. tuberculosis is a near-perfect human predator in part because it moves very slowly.

Most active tuberculosis illnesses occur within two years of initial infection, but sometimes the infection can lie dormant for decades before suddenly exploding into active disease. Often, the factors leading to active disease are clear—a compromised immune system from HIV, malnutrition, stress, or air pollution all might trigger the disease into life. Immunosuppressive drugs that treat autoimmune disorders like Ulcerative Colitis can also cause TB infections to become active disease, which is why Americans often hear tuberculosis listed among potential side effects in drug commercials. But other times the causes are mysterious—something in the body’s balance shifts, and slowly the body is overwhelmed with bacteria.

Once the disease becomes active, its course is extremely unpredictable. For reasons we don’t fully understand, some patients will recover without treatment. Some will survive for decades but with permanent disability, including lung problems, devastating fatigue, and painful bone deformities. But if left untreated, most people who develop active TB will eventually die of the disease. Their lungs collapse or fill with fluid. Scarring leaves so little healthy lung tissue that breathing becomes impossible. The infection spreads to the brain or spinal column. Or they suffer a sudden, uncontrollable hemorrhage, leading to a quick death as blood drowns the lungs.

Today, we understand that these familiar symptoms are associated with tuberculosis of the lungs. But TB can also invade other parts of the body and express itself very differently. Classically, what we now understand to be TB was seen as several different diseases. From the pancreas to the spinal cord to the lymphatic system to the brain, a tuberculosis infection can cause a wide array of illness, from brain swelling (tuberculous meningitis) to the rupture of infected lymph nodes through the skin (scrofula) to tuberculosis of the bone, which can cause lifelong disability through destroying hip, spine, or limb bones. TB affecting the spine, known as Pott’s disease, is a common and terribly painful cause of a hunched back (the fictional hunchback of Notre Dame suffered from Pott’s disease).

And now, as he showed me the place in 2019, it was once again a ruin. The Ebola survivor explained to me this was common in Sierra Leone: People come in with a one-year or three-year grant to do this or that, and then at the end of the grant period, they leave with a half-finished project. In the case of Ebola response, Dahl said that you could “hear the sucking sound” of global money leaving as the crisis started to wind down. But for many Sierra Leoneans, hardly anything had gotten better. Yes, Ebola had been successfully addressed, but the healthcare system was weaker than ever—clinics were no better resourced than they had been before the crisis, few new healthcare workers had been trained, and much of the existing healthcare workforce had been killed by Ebola.

Before vaccination, C-sections, infection control, and antibiotics, the death of children was routine. About half of all humans ever born died before the age of five. Child death was so common that it had to be acknowledged as natural. And so the acceptable times to die in much of the premodern world were 1. Early in childhood, or 2. Late in adulthood. But tuberculosis has long been known for sickening and killing those between twenty and forty-five, during the one period of life when you were supposed to be relatively insulated from illness and death. While TB is also common among children and elderly people, consumption was known as “the robber of youth” in the eighteenth and nineteenth centuries because of its ubiquity among young adults. How could we explain this disease that should not be, that was at once omnipresent and terrifyingly unnatural?

want to pause here to note a defining feature of humans, which is that we like to know why things happen, especially why really bad things happen. And if a reason is not immediately apparent, we will find one. I am reminded of a poem in Kurt Vonnegut’s novel Cat’s Cradle: Tiger got to hunt, Bird got to fly; Man got to sit and wonder, “Why, why, why?” Tiger got to sleep, Bird got to land; Man got to tell himself he understand. Vonnegut reminds us that we are both inclined toward curiosity and inclined toward arriving at some kind of comprehensible conclusion.

Across many of his eighteen thousand poems, Shiki elliptically and brilliantly captures the pain and the isolation of illness. One series of haiku begins: It is snowing! I see it through a hole In the paper door The poet can celebrate snow, even if he can only see it through a hole in the door. But he feels himself more observer than participant: All I can think of Is that I am lying In a house in the snow. The consumptive poet cannot be in the snow, only lying in a house in the snow. For me, anyway, this way of understanding chronic illness—as being of the world but also not permitted by circumstances or the social order to be entirely with the world—is a sentiment applied from within rather than from without, a way of thinking about the limits and opportunities of disability that acknowledges difference and loss without othering or romanticizing. It’s not trustful or loving or soothing or mild. It’s true.

By the end of the nineteenth century, the replication and acceptance of Robert Koch’s research meant that the era of consumption, an inherited condition that grew the soul by shrinking the body, ceased to exist. The era of tuberculosis, an infectious disease of the poor and marginalized, had commenced. In fact, the way we understood “consumption”—that bright, mild, kind disease that Harriet Beecher Stowe described—was so different from the way we understood “tuberculosis” that even though they are the same disease, one could be forgiven for thinking they were entirely different. Consumption, after all, was a flattering malady, a genetic disorder enriching the soul even as it slowly destroyed the body. Tuberculosis was a horror, an invisible contamination proliferating within you and then spreading to anyone near you.

None of this was true, of course. 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.

People who are treated as less than fully human by the social order are more susceptible to tuberculosis. But it’s not because of their moral codes or choices or genetics; it’s because they are treated as less than fully human by the social order.

At the time of its introduction, rifampin was tested in a 600-mg once daily dose—not because that was believed to be the most effective dose, but because it was believed to be the cheapest dose that was still effective. And even today, we still prescribe 600 mg of rifampin, even though the drug costs less to produce and it now seems likely that higher doses would be more effective. “We’ve been underdosing with this drug for fifty years,” Dr. Carole Mitnick told me, because we still base our cost analysis on how expensive the drug was to synthesize in 1969. This increases the likelihood of patients developing resistance to rifampin and other drugs in its class, because the bacteria has longer to evolve immunity to a needlessly low dose, and it also means that people are sick (and contagious) longer than they need to be. All of this happens because of what Dr. Mitnick describes as “a failure of imagination.” “There is this continued mentality of scarcity in TB,” she explained.

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.

Henry was sick not really because of Koch’s bacillus, but because of historical forces, the ones we’ve encountered here. Henry embodied spes phthisica—he was sensitive and poetic. And yet he wasn’t treated as a luminous, beautiful poet condemned to die by the same wonderful forces that gave him his creative powers. His illness was a product of Sierra Leone’s centuries-long impoverishment, of a healthcare system hollowed out by colonization and war and Ebola, of a world that stopped caring about TB when it ceased to be a threat to the rich.

While this finding meant that bedaquiline would become less expensive in India, J&J had succeeded in filing secondary patents in most low- and middle-income countries, meaning that, for much of the world, affordable bedaquiline would remain out of reach. After negotiations with global health organizations and loud protests from anti-TB activists, J&J backed down, allowing generic bedaquiline in most countries, and then eventually abandoning all efforts to enforce their secondary patents on the drug. As a direct result, the price of bedaquiline dropped by over 60 percent almost overnight.

There is still a long way to go when it comes to making TB treatment plentiful, affordable, and universally accessible. But it is only because PIH and others proved that MDR-TB could be cured in poor countries, and only because MDR-TB survivors like Venkatesan and Tisile lived to fight patent evergreening, that we are seeing progress at all.

But as Dr. Carole Mitnick said to me once, “This is a human-manufactured problem that needs a human solution. If medications were a public good, the burden of disease would drive the priorities of the industry and TB treatment would be varied and plentiful.” And so we must fight not just for reform within the system but also for better systems that understand human health not primarily as a market, but primarily as a shared priority for our species.

The biomedical paradigm has become so powerful in my imagination that it’s easy to forget how inadequate mere medicine can be. 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.

We cannot view “health” absent the “social determinants of health,” or else we end up in situations seen all the time with TB, wherein people are, to cite just one example, unable to take their medicine because they don’t have enough food in their stomach.

Henry is a human being, just as you are a human being. Consider yourself for a moment—everything you’ve overcome, everything you’ve survived. Think of the people who loved you up into your now. Think of how hard school is or was, how you were lucky or blessed to meet people you could love and who could love you. Think about how rare and precious humans are, and how many of them you get to worry for and care about. Then, if you can, find a way to multiply that times 1,250,000. That is why we must work together to end tuberculosis and all other diseases of injustice.

To learn more about the history of Sierra Leone, I recommend Joe A. D. Alie’s A New History of Sierra Leone, which explores the history of the country from a Sierra Leonean perspective.