Everything is Tuberculosis Book Summary
The History and Persistence of Our Deadliest Infection
Book by John Green
Summary
Tuberculosis has been entwined with humanity for millennia. Once romanticized as a malady of poets, today tuberculosis is a disease of poverty that walks the trails of injustice and inequity we blazed for it.
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The Weight Of History
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.
The Sierra Leonean physician Dr. Bailor Barrie once told me, "If you want to understand why Sierra Leone is poor, you must look at a map of our railroads." 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, where those minerals could be exported. 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.
Section: 1, Chapter: 3
How We Imagine Illness
We pay a lot of attention to how we treat illness, and much less to the critical question of how we imagine illness. In Christian Europe, the disfiguring illness leprosy was long heavily stigmatized, but this way of imagining leprosy is not inherent to the disease—in precolonial Africa, leprosy was not especially feared or stigmatized.
When I was initially diagnosed with an anxiety disorder in the late 1980s, it was not seen primarily as a biomedical phenomenon, but instead as an overdeveloped personality trait. Today, in my community, anxiety is more likely to be imagined as an illness to be treated through the healthcare system. I would argue this shift happened largely because the healthcare system got better at treating anxiety. And so we must remember that illness is not only a biomedical phenomenon, but also a constructed one.
Section: 2, Chapter: 5
The Romanticization Of TB
In the eighteenth and nineteenth centuries, Europeans came to romanticize consumption, to see the illness as beautiful and ennobling. I would argue that the proper way to understand the utterly surreal romanticization of TB is that as the disease exploded in cities, stigma alone simply could not answer the "why, why, why" of consumption. Instead, people began to conclude that consumption was caused by a personality especially attuned to the fragile and fleeting loveliness of life.
This romanticization continued for a very long time: In the 1909 book Tuberculosis and the Creative Mind, Dr. Arthur Jacobson maintained that TB offered a "divine compensation" in exchange for illness: TB patients' lives "are shortened, physically, but quickened psychically in a ratio inversely as the shortening." Maybe the nineteenth-century Romantics would die early, but oh, the poems they would write.
Section: 2, Chapter: 6
A Lesson From The Japanese Poet With TB
All I can think of
Is that I am lying
In a house in the snow.
- Masaoka Shiki
Section: 2, Chapter: 6
A Flattering Malady
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."
- John Green
Section: 2, Chapter: 7
A Disease Of Civilization?
As Frank M. Snowden observes in Epidemics and Society, white physicians in Europe and the U.S. generally agreed that consumption was, as some eighteenth-century observers put it, a disease of civilization. Everyone knew that rural communities were less vulnerable to consumption. But in a highly racialized social order, conceiving of phthisis as a "civilized" disease also meant that it could not be a disease of uncivilized people, which furthered the racialization of consumption.
In Europe and the U.S., most white doctors believed that phthisis—as it was inherited by those with great sensitivity and intelligence—could only affect white people, and it was sometimes known as "The White Man's Plague." One American doctor, for instance, called it, "a disease of the master race not of the slave race." 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.
Section: 2, Chapter: 7
Koch's Bacillus And The End Of Romanticism
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.
Section: 3, Chapter: 8
The Racialization Of Tuberculosis
We see the profound shift from an inherited disease of intellect to a contracted disease of filth in the racialization of tuberculosis. 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. One white doctor's 1896 treatise asserted that African Americans were disproportionately dying of tuberculosis due to their smaller chest capacity and increased rate of respiration.
Section: 3, Chapter: 9
The Mother Who Stays Closer
Mom you are special and beautiful
You stand closer
When everyone ran away
Especially my cousin ran away
But you stood firm.
- Henry Reider
Section: 3, Chapter: 9
Stigma's Double Burden
Stigma is a way of saying, "You deserved to have this happen," but implied within the stigma is also, "And I don't deserve it, so I don't need to worry about it happening to me." This can become a kind of double burden for the sick: In addition to living with the physical and psychological challenges of illness, there is the additional challenge of having one's humanity discounted.
People living with TB today have told me that fighting the disease is hard, but fighting the stigma of their communities is even harder. 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.
Section: 3, Chapter: 9
Angie's Secret Letters
One day, young Gale overheard a terrible secret about her best friend Angie: Angie's sister Pauline, who wrote her weekly, had in fact already died of TB. "But her father didn't want her to know," Gale recalled, because it might cause the kind of emotional shock that was deemed dangerous to the TB patient. So to encourage the daughter he still had, this father wrote letters that mimicked the handwriting and style of the daughter he'd lost.
Having been told that patients could not be exposed to bad news without risking their health, Gale never told Angie that her sister had died. But it didn't matter. "I saw them wheeling a stretcher with a body on it down to the morgue. I knew right away it was my best friend Angie." Gale was eight years old.
Section: 3, Chapter: 11
Trepidation And Hope
Of his time at Lakka, Henry wrote in his memoir, "Every morning at the break of dawn, the nurses would arrive with a tray of medications, a bitter reminder of the battle within. These pills, each with its own set of side effects, were ingested with a mix of trepidation and hope."
- John Green
Section: 3, Chapter: 11
The Sanatorium Experience
Henry described "a sense of interminable monotony" at Lakka, and in that way it was similar to life in sanatoria, which tended to be excruciatingly dull for the patient. The job of the "invalid," as patients were commonly known, was to improve their health. The word "invalid," of course, gets at the core of what it meant to live with chronic illness—you were a person outside of society, invalid in the social order, separated from your family and your community.
Patients were often told to move very little, discouraged even from writing letters or combing their own hair. They were also told not to feel too intensely, or drink alcohol, or have sex—all exciting behaviors that could excite the tuberculosis within. In order to maximize the chance for a cure, one doctor wrote, "The smallest details of the patient's life are controlled by the supervising physician and nothing of any importance is left to [the patient's] judgment."
Section: 3, Chapter: 11
TB's Disproportionate Impact On Children
Gale was just three years old when she arrived at Lakeville Sanatorium in Massachusetts, and like many patients, she was told that a positive attitude and absolute fealty to her physician's treatment plan were essential to her survival. She recalled, "The night was frightening to me—the darkness would start to settle in, then the stillness. The children sobbed, calling for their mothers. The nurses would come in and say, 'Silence, everyone!'"
At many institutions, crying in public was strictly forbidden, because it would harm morale and thus one's overall chance for a cure. For young Gale, visitors were very rare, and she was frequently chastised for her bad attitude and behavior. "Punishment consisted of being isolated," she wrote. "No one could talk to me; I could not play with any of my toys; a screen would be placed around my bed so I could not see the rest of the children." This happened when she was just four years old.
Section: 3, Chapter: 11
Direct Observation Therapy
A major component of the DOTS (Directly Observed Therapy, Short-Course) protocol was that patients would be "directly observed" taking their medication each day by someone other than a family member. Often, this means patients have to make their way to a clinic each day in order to receive their medication and be observed while swallowing the pills to ensure compliance.
It's very common to hear that one of the biggest drivers of drug resistance is patients "failing to take their meds." This so-called "patient noncompliance" is indeed a central factor driving antibiotic resistance to tuberculosis. For a variety of reasons, many patients struggle to complete their lengthy antibiotic regimens, thereby giving the infection more opportunities to evolve resistance to treatment. 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."
Section: 4, Chapter: 13
The Slow Pace Of TB Research
Antibiotic resistance is a complex and many-tentacled beast—countless factors from overprescription to antibiotic use in livestock have contributed to it. But in considering the rise of multidrug-resistant tuberculosis in particular, it's important to note that we are in this mess first and foremost because we stopped trying to develop new treatments for tuberculosis. 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.
In the last couple decades as economic incentives have shifted, we've been able to develop powerful new medications to treat TB, including bedaquiline and delamanid. When markets tell companies it's more valuable to develop drugs that lengthen eyelashes than to develop drugs that treat malaria or tuberculosis, something is clearly wrong with the incentive structure.
Section: 4, Chapter: 14
The Economics Of TB Treatment
Analyses of cost-effectiveness often only run skin deep. 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.
From that perspective, investing in tuberculosis diagnosis and treatment begins to look like one of the best bets in global health. 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, and through more people being able to work rather than being chronically ill or caring for their chronically ill loved ones.
Section: 4, Chapter: 15
The Ghost Of My Future
When Henry learned his treatment of injectables had failed, he became despondent. "The light that had once shone brightly in my eyes was now dimmed," he wrote. "As the months went on, the isolation grew more profound." There was no more rapping and dancing in the hallways, wearing his sunglasses upside down to make the other patients laugh. He knew now. He wasn't just falling behind his peers; he was saying goodbye to the world at the age of eighteen.
By the spring of 2020, Henry and his friend Thompson were both in decline. To Henry, Thompson was not only a friend and mentor but also, as Henry once called him, "a ghost of my future." And then one morning, Thompson was gone. "My friend lost his life. And after he died, something told me: 'You are next, Henry. You are next.'" Henry felt certain that his death was imminent.
Section: 5, Chapter: 17
Dr. Girum's Promise
Dr. Girum was afraid—he was new to the country and didn't yet speak fluent Krio. Henry's father announced he would come back tomorrow to take his son so that Henry could spend his final days at home surrounded by those who loved him, and if he wasn't allowed to take his son, Henry's father promised to beat Dr. Girum.
The next morning, Henry's father returned to the hospital. He walked around the doctor's desk, ready to punch Dr. Girum, who calmly told Henry's father, "If you take your boy away now, all the work we have done is meaningless. I know you are a dad. I am also a dad. But I am his doctor, and I can promise you that if this boy is not doing well on a new drug regimen, come and beat me. Don't hit me today. Beat me later if this fails."
Section: 5, Chapter: 17
The Failure Of Medical Imagination
When I began reading and writing about tuberculosis, I was very fortunate to come across Vidya Krishnan's arresting and brilliant book Phantom Plague: How Tuberculosis Shaped History. She describes what Dr. Carole Mitnick calls "a failure of imagination." "There is this continued mentality of scarcity in TB," she explained.
I think of this in the context of my brother Hank and his cancer care. 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. 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 available to you." How can I accept a world where Henry and his family are told that?
Section: 5, Chapter: 18
TB Compounded By HIV Crisis
Beginning in the early 1980s, physicians and activists in the Global South began sounding the alarm about an explosion in uncommonly swift and severe cases of tuberculosis. Young patients were dying within weeks instead of over years, often with TB disseminating throughout their lungs with terrifying speed, choking patients to death.
These deaths seemed to be associated with the emerging pandemic now known as HIV/AIDS. In 1985, physicians noted high rates of active tuberculosis disease among HIV-positive patients in Zaire and Zambia. Because untreated HIV lowers resistance to infection, TB infections are far more likely to progress to active disease as the immune system weakens, and that weakened immune system allows TB to kill quickly. Even though many were pointing out this connection, far too little was done to expand access either to TB or HIV medication in low- and middle-income countries.
Section: 5, Chapter: 19
TB's Vicious Cycles
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.
Section: 5, Chapter: 19
The Magic Of Effective Treatment
Within a week of the new medication regimen, Dr. Girum noticed progress, especially with the open sores from Henry's ruptured lymph nodes. "It was like magic," he told me. For over a month, Henry had lived with open wounds in his neck and shoulder from lymph nodes so swollen they burst through the skin. But now, the nodes were retreating, and the open sores began to heal. "I could see the wound drying," Dr. Girum said. "I told myself, 'This is an early sign.' In a week, the boy started to eat well."
After a few months of effective treatment, no bacteria was detectable in Henry's sputum for the first time in years. Although the infection still lived in his lungs and lymph, he was far less infectious, and so he was able to receive visitors again. Isatu returned to her daily visits.
Section: 6, Chapter: 21
Henry's Phoenix Moment
Although Henry worried he'd aged out of school, with support from Partners In Health he found a place at a secondary school where he excelled. He made friends easily and enjoyed the academic work. He wasn't just able to catch up to his peers; he earned admittance to the University of Sierra Leone, one of the nation's most prestigious institutes of higher learning, where he is now a second-year student studying Human Resources and Management. "Education is the most important thing," he told me once. "Not just for me, you know, but also for the nation."
Henry not only managed to return to school; he also started making online videos on YouTube. Sometimes, he makes videos of him dancing with friends. He also runs a channel for Isatu where she shares traditional Sierra Leonean recipes. In the years since his recovery, Henry has also become a TB activist with a special focus on raising money and attention for Lakka.
Section: 6, Chapter: 22
Bedaquiline Patent Battle
Phumeza Tisile, a TB survivor, along with her friend and fellow TB survivor Nandita Venkatesan, filed a patent challenge in an Indian court asking the government to reject efforts by the pharmaceutical company Johnson & Johnson to extend their patent on the drug bedaquiline.
Bedaquiline is a powerful medicine in the fight against MDR-TB, but was far out of reach for most people living with the disease, because J&J charged $900 for a single course of treatment in poor countries and $3,000 in middle-income countries. After negotiations and protests, J&J backed down, allowing generic bedaquiline in most countries. As a direct result, the price of bedaquiline dropped by over 60 percent almost overnight.
Section: 6, Chapter: 22
Partners In Health's Approach
In the late 1990s, Partners In Health began to treat MDR-TB patients in an impoverished neighborhood of Lima where the disease had become endemic. They individually tailored treatment regimens to patients and provided comprehensive support via direct financial payments so that patients could eat enough to fuel their recovery. The project also provided regular visits from community health workers who lived in the affected communities and served as a bridge between the healthcare system and neighborhoods that had long been overlooked.
The idea was simple. "We should treat people if we have the technology," as Dr. Farmer put it. Partners In Health announced its extraordinary results: Over 85 percent of the Peruvian MDR-TB patients achieved cure with comprehensive support. One expert called it "astonishing." These cure rates were comparable to, or even better than, those seen in the world's best-funded hospitals.
Section: 6, Chapter: 22
The STP Initiative
TB activists and researchers have developed a comprehensive plan—and yes, of course it has an acronym: STP (Search, Treat, Prevent). The STP initiative would hire healthcare workers to Search for cases household by household around the world, diagnosing cases of TB before they become so serious or disabling as to require hospitalization. It would then Treat those diagnosed with a four-month course of antibiotics for most patients, and a six-month course for those with multidrug-resistant TB. And lastly, this program would Prevent further lines of infection by offering one month of preventive therapy to all those living in the same household as a person diagnosed with TB, because that preventive therapy helps to end the chain of transmission.
If we spent twenty-five billion dollars on comprehensive care per year, we could drive tuberculosis toward elimination. We'd also save a lot of money in the long run—over forty dollars for each of those twenty-five billion dollars.
Section: 6, Chapter: 23
The Biomedical Vs. Social Understanding Of Disease
We can understand the history of tuberculosis as a story of competing paradigms: These days, we primarily see tuberculosis through a biomedical lens—as an infection caused by a bacterium and cured by drugs designed to kill or otherwise inhibit that bacterium. Others view TB through a religious paradigm or a hereditary one or a sociological lens, as an illness caused by poverty and marginalization.
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" cannot be viewed independently of the "healthcare system," because they are essential facets of healthcare.
Section: 6, Chapter: 23
The True Costs Of Tuberculosis
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?
"How many would die if everyone could access good healthcare?" he asked me, as if he seemed confused by my question.
"Yes," I said.
"None. Zero. Zero people should die of TB."
- John Green
Section: 6, Chapter: 23
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