Everything Is Tuberculosis

Die erste Hälfte war fantastisch. Sehr viele augenöffnende Informationen zu Tuberkulose, einer Krankheit, von der ich mehr oder weniger gar nichts wusste. Ich wusste nicht mal, dass es das gleiche wie Schwindsucht ist.

Zum Ende hin wurde es ein bisschen repetitiv und [[John Green]] wiederholt mir, für meinen Geschmack, etwas zu oft, dass es diese Krankheit in ihrer heutigen Form nicht mehr geben müsste, würde man als Menschheit dafür sorgen, das einkommensschwächere Regionen der Erde Zugang zu Medikamenten und nötiger Infrastruktur bekommen.

By 1900, phthisis had come to be known by a new name: tuberculosis. — location: 36 ^ref-25647

Now we are two centuries removed from the deaths of Jessy and Gregory Watts, and nearly a century removed from the death of my great-uncle Stokes. 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. — location: 56 ^ref-39552

maintains that TB has killed around one in seven people who’ve ever lived. 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. In 2000, the Ugandan physician Dr. Peter Mugyenyi gave a speech about the rich world’s refusal to expand access to drugs treating HIV/AIDS. Millions of people were dying each year of AIDS, even though safe and effective antiretroviral therapy could have saved most of their lives. “Where are the drugs? The drugs are where the disease is not,” Dr. Mugyenyi said. “And where is the disease? The disease is where the drugs are not.” — location: 59 ^ref-61869

Today, we understand tuberculosis as an infection caused by bacteria. TB is airborne—it spreads from person to person through small particles contained in coughs, sneezes, or exhalations. 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 — location: 76 ^ref-37106

The archduke’s car took off after that, and the remaining conspirators gave up. At this point the archduke probably should’ve returned to his hotel after almost dying, but one of his companions convinced him to continue driving around Sarajevo, saying, “Do you think Sarajevo is full of assassins?” Minutes later, their driver—who did not know the streets of Sarajevo well—took a wrong turn and stopped the car to shift into reverse. And where should that car stop except right in front of Gavrilo Princip. Princip shot both the archduke and Duchess Sophie to death, and then took his cyanide pill, which of course failed to kill him. Instead, he and all of his coconspirators were imprisoned. In the Austro-Hungarian Empire, it was illegal at the time to put teenagers to death, but the government didn’t need a firing squad to kill them. All three would be dead before the end of the war, and all from tuberculosis. — location: 216 ^ref-56375

Anfang des [[Erster Weltkrieg|ersten Weltkriegs]]. Die drei Verantwortlichen für den Attentat auf [[Franz Ferdinand von Österreich-Este|Franz Ferdinand]] hatten [[Tuberkulose]]

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. In 1950, life expectancy in Britain was sixty-nine. In Sierra Leone, after 150 years of colonial rule, life expectancy was under thirty, relatively similar to the life expectancy of premodern humans who lived five thousand or fifty thousand years ago. In general, colonial infrastructure was not built to strengthen communities; it was built to deplete them. — location: 246 ^ref-18037

[[Kolonialismus]]

This story of destruction and violence accelerated with the transatlantic slave trade. In the eighteenth and nineteenth centuries, roughly four hundred thousand people living in what is now [[Sierra Leone]] were kidnapped and sold into slavery, fueling terror throughout the region. — location: 260 ^ref-26317

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. In fact, tuberculosis is listed in Guinness World Records as the oldest contagious disease. — location: 347 ^ref-6481

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. — location: 356 ^ref-54651

Auf Deutsch: Schwindsucht

Unlike many other diseases, for most of human history, consumption appeared indiscriminate, killing the rich and the poor, the foolish and the brilliant. Charles Dickens called consumption the disease that “wealth never warded off,” and indeed among its victims was the richest individual of the nineteenth century, Jay Gould. John Bunyan called consumption “the captain of all these men of death” for its ubiquity and severity. Victims of consumption included Henry VII of England, Paul Laurence Dunbar, Eleanor Roosevelt, Lin Huiyin, Simón Bolívar, [[Franz Kafka]], Louis XIII of France, John Keats, Sultan Mahmud II, and all three Brontë sisters. — location: 361 ^ref-28076

Some classical thinkers did even approach a germ theory of disease long before microscopy could confirm it. Around a thousand years ago, the Persian scholar and poet Ibn Sina wrote that tuberculosis and other illnesses were caused when the body was “contaminated by tainted foreign organisms that are not visible by naked eye.” — location: 376 ^ref-12987

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.fn2 — location: 389 ^ref-21470

Let’s turn back now to 1804, the year that James Watt’s son Gregory died of tuberculosis. In May of that year, [[Napoleon Bonaparte]] was named Emperor of France; in July, Aaron Burr shot [[Alexander Hamilton]]. I understand if this all feels like ancient history, but it’s really not. As of 2025, around 117 billion modern humans have lived. Over 100 billion were born before 1804. Almost everything that ever happened to us, and almost everyone who ever happened, happened before 1804. — location: 419 ^ref-39437

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). — location: 463 ^ref-18555

Drug resistance is sometimes present in the strain of M. tuberculosis from the beginning; other times it develops after treatment begins, especially if treatment is not adequate. We’ll never know how or when Henry’s drug resistance developed, but most likely he was responding well to treatment until his father, who’d briefly reentered Henry’s life, insisted on taking Henry off the medication regimen. After the first three months of treatment, Henry’s father felt certain the drugs had failed. He demanded Henry stop taking the pills and then sought help from a traditional faith healer. “This is not a disease for the doctors,” as Henry’s father put it. Instead, it was a disease to be treated by God through God’s healers. — location: 503 ^ref-9879

[[Religion]] statt Medizin. [[Aberglaube]]

Despite the family’s fears, Isatu brought Henry to Connaught Hospital in [[Freetown]], one of the best hospitals in the country, where he was again diagnosed with tuberculosis. By this time, those extremely accurate and quick molecular tests were available in rich countries. Within a couple hours of providing a sputum sample, Henry could have known not only that he had tuberculosis, but which drugs would treat his particular infection. He could have known that his TB was resistant to two of the first-line RIPE drugs. He could have known that his TB was also resistant to a second-line drug. He could have immediately begun taking appropriate, widely available medication that would’ve cured him within eighteen months. But although these molecular tests had been around for a few years, they were expensive and unavailable to Henry, or indeed to most other patients who desperately needed them. Instead, Henry was diagnosed via chest X-ray, which showed advanced disease but gave no indication as to whether Henry’s particular infection was resistant to first-line antibiotics. — location: 581 ^ref-9714

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. — location: 656 ^ref-33836

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.” — location: 689 ^ref-50575

There were, however, some who saw the absurdity of this lie. [[Alexandre Dumas]], for instance, satirized the romanticization of the moment. He deadpanned that in 1823 and 1824, “it was the fashion to suffer from the lungs; everybody was consumptive, poets especially; it was good form to spit blood after any emotion that was at all sensational, and to die before reaching the age of thirty.” But Dumas himself also embraced a romantic ideal of consumption; as David Barnes points out in The Making of a Social Disease, “the disease’s wasting effect on the body is portrayed as enhancing feminine beauty” in Dumas’s novel The Lady of the Camellias. — location: 714 ^ref-51430

Women with consumption were believed to become more beautiful, ethereal, and wondrously pure. As [[Charlotte Brontë]] put it in a letter she wrote as her sister was dying of the disease, “Consumption, I am aware, is a flattering malady.” 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. [[Henry David Thoreau]] wrote in his journal, “Disease and decay are often beautiful—like the pearly tear of the shellfish or the hectic glow of consumption.” Phthisis was deeply associated with feminine beauty in Northern Europe. Small, waifish bodies can now seem so associated with beauty (and health!) that it can feel innate or instinctual to find smaller bodies more attractive than larger ones. But that’s not inherent to humanity (and indeed was not a significant bias of humanity until relatively recently). — location: 770 ^ref-16625

The English actor Eliza Poe, whose beauty was widely admired, looked stereotypically tubercular—her rosy cheeks, alabaster skin, wide eyes, and tiny body were all the result of consumption, which killed her in 1811, when she was in her early twenties and her son, Edgar, was two. [[Edgar Allan Poe]] would go on to describe many of the women in his stories and poems as similarly wispy, pale, and large-eyed before he himself possibly died of tuberculous meningitis. — location: 781 ^ref-58575

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.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. — location: 809 ^ref-42865

Our historical overview has focused on northern Europe and the U.S., where consumption was considered inherited for most of the nineteenth century, but that certainly wasn’t the case everywhere. Rates of phthisis appear to have been lower, for example, in China, where Daoist physicians argued the disease was infectious beginning in the twelfth century CE. Consumption was rarer in southern Europe as well, where the illness was also understood to be infectious. As the writer George Sand tried to find a place for consumptive Frédéric Chopin to stay in Spain, Sand wrote a friend, “Phthisis is scarce in these climates and is regarded as contagious.” But of course phthisis was scarce in those climates precisely because it was regarded as contagious. “We went to take residence in the disaffected monastery of Valdemosa,” Sand goes on, “… but could not secure any servants, as no one wants to work for a phthisie …. We begged of our acquaintances that they give us some help … a carriage to take us to Palma from where we wanted to take a ship back home. But even this was refused us, although our friends all had carriages and wealth.” — location: 863 ^ref-17697

Faszinierender Kontrast.

But the very next year, all these causes would be challenged as it became clear that consumption was caused by the spread of “a vexatious little organism” called Mycobacterium tuberculosis. First identified by the German doctor [[Robert Koch]], the discovery of M. tuberculosis would radically reshape our understanding of the disease as well as our strategies for containing it—both medically and psychosocially. — location: 888 ^ref-46313

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. — location: 933 ^ref-8233

But because Koch hastily promised not a test but a cure, thousands of people died in Berlin and around the world while taking Koch’s serum. As René and Jean Dubos write, “It soon became obvious that tuberculin killed many more patients than it helped.” Koch ended up disgraced, and struggled to rebuild his reputation, not least because he clung to the idea that his cure really was a cure. Conan Doyle went home to England and within a decade published his first Sherlock Holmes story, all about a detective who uses reasoning and evidence to reach rigorous conclusions about causes of death, meaning that Holmes’s work was not so distant from that of his author. — location: 1118 ^ref-34804

Attention first came to focus on the kinds of places and environments that seemed to foster outbreaks of tuberculosis—crowded housing tenements, dirty factories, fly-ridden environs, and the endless streams of tobacco and other spit spewing from the public. The United States of America, [[Charles Dickens]] once noted, was “a nation of spitters.” People spit on trolleys and on sidewalks, on restaurant floors and even in the home. Many public health efforts focused on discouraging or even outlawing spitting (public spitting continues to be illegal in many American municipalities), which likely did have some effect on rates of transmission. The movement to convince folks to cover their coughs and sneezes with a handkerchief or, failing that, a hand prevented even more transmission of TB (and other respiratory diseases). — location: 1128 ^ref-3528

People also obsessed over dirt, dust, and the places on the body where germs might find purchase. This again changed fashion, grooming, and social habits. “There is no way of computing the number of bacteria and noxious germs that may lurk in the Amazonian jungles of a well-whiskered face, but their numbers must be legion,” argued Dr. Edwin F. Bowers in a 1916 magazine article called “The Menace of Whiskers.” Fear of TB germs getting caught in beards led to what Harper’s Weekly called “The Revolt against the Whisker,” ushering in an era of clean shaves. For women, hemlines grew shorter as anxiety rose that floor-length dresses might pick up TB germs off dirty floors. But as Nicole Rudolph points out in Sins against Our Soles, “Hygiene involved far more than just the health of the body.” Hygiene continued to be an excuse for treating fashion as a villain. One couldn’t have too long a hemline, lest one risk carrying TB particles into the home. But one also couldn’t have a short hemline, because then one might catch cold, which was believed to be a cause of tuberculosis. In short, no fashion would suffice unless it was defined as hygienic by the patriarchal medical establishment. And moral hygiene—being clean not just in body but also in mind and action—continued to be seen as essential to controlling tuberculosis. — location: 1147 ^ref-50240

Tuberkulose hat [[Schönheitsideale]] und [[Mode]] beeinflusst und [[Trends]] kreiert.

Over a century later, BCG is still our only vaccine for TB—although by 2024, there were at last promising candidates in development. The efficacy of BCG is one of the most debated questions in all of public health, but what’s agreed is that: BCG is effective at preventing severe illness in children, especially children under the age of five. BCG is not particularly effective—and maybe not at all effective—at preventing infection, serious illness, or death in adolescents or adults. Even if the vaccine is administered multiple times, it simply does not seem to prevent much, if any, illness among most adults and teens. For reasons we don’t fully understand, efficacy seems to get worse as one gets closer to the equator. — location: 1295 ^ref-60715

Less than fifty years after [[Thomas Mann]] published the classic TB novel The Magic Mountain, tuberculosis—and the sanatoria that supported TB patients—was mostly a memory in Europe. For one example, take Switzerland, where The Magic Mountain is set. By 1970, Switzerland saw fewer than ten TB deaths per hundred thousand residents. — location: 1356 ^ref-18193

[[Der Zauberberg]] scheint Tuberkulose als Inhalt zu haben. Wusste ich nicht.

The real issue is not that TB is uncommonly good at selecting for resistance. The real problem is that in the forty-six years between 1966 and 2012, we developed no new drugs to treat tuberculosis. — location: 1483 ^ref-17092

In denying HIV treatment to the poor, the reasons cited—patients couldn’t be trusted to take their medication on time, better to focus on prevention and control—were the same as we’ve seen with TB. In 2001, the head of USAID—the U.S. government’s arm devoted to international aid—had this to say about making antiretroviral treatment accessible to the poor: “If we had [HIV medicines for Africa] today, we could not distribute them. We could not administer the program because we do not have the doctors, we do not have the roads … [Africans] do not know what watches and clocks are. They do not use western means for telling time. They use the sun. These drugs have to be administered during a certain sequence of time during the day and when you say take it at 10:00, people will say, ‘What do you mean by 10:00?’” We see here that the racist dehumanization of African people is not only part of nineteenth and twentieth century history. Racism continues to distort our policies and practices. And just as with previous examples of racism, it proved to be totally false. In point of fact, a 2007 study found that Africans were more likely to adhere to HIV/AIDS treatment regimens than North Americans. — location: 1805 ^ref-49000

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. — location: 1820 ^ref-61643

We live in between what we choose and what is chosen for us. — location: 1854 ^ref-44947

In 2023, the endTB trials—funded by Unitaid, Doctors Without Borders, and PIH—found that around 90 percent of MDR-TB cases could be cured for about $300 per course, a 98 percent reduction in price from the 1990s. — location: 1988 ^ref-9497