Everything Is Tuberculosis

My Thoughts

• This was a very insightful and heartfelt book; heartfelt in that how John narrates about Henry and his family….struggles of tuberclosis…and all the socio-economic-political aspect of the infection throughout the world. It’s crazy to think that TB itself is still can’t be eradicated completely while we found vaccines for [[COVID-19]] in very short period of time. It shows the narrative of how some infection – yes like TB itself – when are not what so called “rich, upper-class, wealthy” group of people get, it will be able to get more attention and such.

  • But also, as we’ve seen with COVID, when an incurable illness spreads widely among the rich and powerful, we dramatically increase our investments in tools to treat and prevent that disease. Within 18 months of COVID’s emergence, we had excellent vaccines and effective antiviral medication.

  • 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 because of racism: because of racism, Black Americans were more likely to live in crowded housing — an important risk factor for TB.

• Some parts also hits hard, as if I imagined characters (real person) portrayed in the book, I can empathize so much…There were instances my empathy went overboard reading about how a father wrote a letter to one of his daughters pretending to be the daughter that died of the infection itself. Henry’s mother’s struggle to get Henry the treatment. Henry’s little sister unable to survive.

Notes

• Did TB cause World War I? Not really — but I’d argue it should be listed as a minor cause…
• …alongside the major ones: the alliance system of early-20th-century Europe, the growing militarization and expansion of empires, etc.
• As you may recall from history class, the Great War began after the assassination of the Austro-Hungarian Archduke Franz Ferdinand…
• It’s fascinating to see the places where TB intersects with history, but there’s a risk in claiming that, for instance…
• …or that TB made New Mexico a state, and so on. Looking at history through any single lens creates distortions, because history is too complex for any one way of looking to suffice.
• It is a strange fact of human history that we tend to focus so little on disease — 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.”
• But I wonder if, as Barbara Duden has written, “pain is in the body, [but] it leaves no trace for the historian unless complaints about it are recorded.”
• …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.
• In ancient China, TB was known by various names. In fact, tuberculosis is listed in Guinness World Records as the oldest [known] contagious disease.
• Over 800 years ago, Taoist priests began referring to the illness as the “corpse disease,” because it transforms a living being into a cadaver — as if the disease assumed the very body, shrinking and shriveling it.
• Victims of consumption included Paul Laurence Dunbar, Eleanor Roosevelt, Simón Bolívar, Franz Kafka, Louis XIII of France, and John Keats. (A couple of names in this capture were too garbled to recover.)
• To try to understand the state of medicine in this era, I sometimes think of the 18th-century physician Johann Storch, whose patient histories were the subject of Barbara Duden’s brilliant book The Woman Beneath the Skin — a time when doctors were instructing patients to spit out all their phlegm, rather than swallow it.
• The standard approach is to give first-line treatment and only test for drug resistance if that treatment fails. 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 inadequate.
• [Anxiety treatments] have been very effective for many, including me — largely because the healthcare system got better at treating anxiety, not only with pharmaceutical interventions but also with stronger…
• …cognitive behavioral therapy for generalized anxiety disorder. And so we must remember that illness is not only a biomedical phenomenon but also a constructed one — and how we imagine leprosy, or OCD, or tuberculosis matters.
• On my first day of training she said to me — with the calm eyes and calm voice her job demanded — “Death is natural. Children dying is natural. None of us actually wants to live in a natural world.”
• I want to pause here to note a defining feature of humans: we like to make things happen — especially to explain why really bad things happen. And if a reason is not immediately apparent, we will find one.
• I’m 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.”
• 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 kind of divine compensation in exchange for illness.
• Lord Byron wrote: “I should like, I think, to die of consumption, because then the women would all say, ‘See that poor Byron — how interesting he looks in dying.’”
• So profound was the link between consumption and creative genius in 18th- and 19th-century Europe and the US that when TB rates declined in the US toward the end of the 19th century, some physicians worried it would harm the quality of American literature.
• Charles Dickens wrote in Nicholas Nickleby of “a dread disease… which so prepares its victim, as it were, for death; which so refines it of its grosser aspect… in which the struggle between soul and body is so gradual, quiet, and solemn.”
• But I find no writing about TB so moving as that of Masaoka Shiki, the Japanese poet often credited with revitalizing the haiku form in the late 19th century. Shiki suffered from spinal and pulmonary tuberculosis and spent the last five years of his life in bed.
• He wrote three haiku just hours before he passed away in 1902 — one of which translates roughly to: “The gourd flowers bloom, but look — here lies a phlegm-stuffed Buddha.” This “phlegm-stuffed Buddha” wrote extensively about the experience of spending one’s life in bed, slowly drowning.
• As the century progressed, TB revealed itself to be not a disease of civilization but a disease of industrialization — of crowding and intermingling in huge cities, with packed tenements and factories where coughed-up particles could linger in the stale air.
• 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 because of racism: because of racism, Black Americans were more likely to live in crowded housing — an important risk factor for TB.
• 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…
• Chronic illnesses are more likely to be stigmatized than acute ones, as are illnesses with high levels of perceived peril. And critically for understanding tuberculosis, stigma can be compounded if a disease is understood to be infectious.
• 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.
• There was cause for hope even before cures became available. People did recover from TB, albeit not usually — and so there was always the possibility of getting to the end of the day.
• The sanatorium controlled everything — what to eat, when to sleep, who to see. A hospital could feel like a prison. As 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.”
• In all the heartbreaks of reading about tuberculosis, perhaps none has stayed with me quite like the image of a father trying to write — in his dead daughter’s handwriting — to his living daughter, in the hope that she wouldn’t be crushed by the truth.
• In the US, we still often use the phrase “TB control” in public health departments, whereas for illnesses like cancer we’re more likely to use “cancer care.” This control-over-care dynamic…
• Chapter 12 — The Cure. In the decades after the discovery of Koch’s bacillus, small improvements emerged. Better diagnostics meant the disease could be identified and treated earlier, especially once chest X-rays emerged as a diagnostic tool — X-rays could see evidence of the disease before symptoms appeared.
• Portable X-ray machines that can be carried via backpack now serve rural communities, so the popularization of this diagnostic method continues to save lives. [He] eventually moved to Connecticut, where he fundraised for TB patients who couldn’t afford treatment and served as a pilot.
• …which is a reminder that we can never see the future coming. We tend to solve the problems we pay the most attention to, and in 1941 we paid a lot of attention to tuberculosis. It was the world’s leading infectious cause of death and disability, and millions of people globally were residents of sanatoria.
• Even as TB became curable, the cure often did not reach the places that needed it most — its burden was borne by the poorest and most marginalized among us. By 1980, the RIPE treatment protocol had been in use for decades in the US and Western Europe, and efforts at case-finding and prevention meant that…
• It became known in the field as DOTS — Directly Observed Therapy, Short-course — a method of delivering anti-TB drugs to impoverished communities, first developed in the 1970s. Less than 50 years after Thomas Mann published the classic TB novel The Magic Mountain, tuberculosis and the sanatoria that supported its patients…
• So why wasn’t Henry on bedaquiline — a safer drug — instead of older injectables that risk hearing loss and/or kidney failure? Bedaquiline could be produced profitably for about $130, but during their monopoly Johnson & Johnson charged far more. Although most of the money that went into developing bedaquiline came from the public — much of it from the US government — the drug was owned and patented by J&J.
• Tuberculosis is a powerful bacterial infection that billions of people lack any effective tools to fight — not because those tools don’t exist, but because we’ve done such a poor job of getting the cure to the disease.
• But also, as we’ve seen with COVID, when an incurable illness spreads widely among the rich and powerful, we dramatically increase our investments in tools to treat and prevent that disease. Within 18 months of COVID’s emergence, we had excellent vaccines and effective antiviral medication.
• Let’s look at the rifamycin class of antibiotics — the R in the RIPE protocol. The first rifamycin drug was synthesized in an Italian lab by Maria Teresa Timbal, Pinhas Margalith, and Piero Sensi. As a 1969 analysis put it, “the major attraction of rifampin, a variant of rifamycin, is its very low toxicity.”
• Despair says: the reason X or Y sucks is that everything sucks; the reason you’re miserable is that misery is the correct response to the world as we find it, and so on. I am prone to despair, so I know its powerful voice. It just doesn’t happen to be true.
• MDR-TB was labeled too expensive to treat in the 1990s, when it cost over $15,000 per patient. Organizations like PIH (Partners In Health) were able to drive that cost down to $1,500 — 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.
• There’s still a long way to go in 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 Nandita Venkatesan and Phumeza Tisile lived to fight patent evergreening — that we’re seeing progress at all.
• 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.
• 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 inhibit it. Others view TB through a religious paradigm — an illness caused by spirits.
• When someone living in Haiti contracts cholera, is the resulting illness really caused by a bacterium called Vibrio cholerae — or is it also caused by dirty water, by poverty, and by the reintroduction of cholera to the nation by aid workers after the 2010 earthquake?
• We cannot view health absent the social determinants of health, or else we end up in situations we see all the time with TB — where, to take just one example, people are unable to take their medicine because they don’t have enough food in their stomachs. I often think about these interdependent systems in the context of my own healthcare.
• TB in the 21st century is really caused by those social determinants of health, which at their core are about human-built systems for extracting and allocating resources. The real cause of contemporary tuberculosis is — for lack of a better term — us.
• In this era of human history, a preventable, curable infectious disease remains our deadliest. That’s the world we are currently choosing. But we can choose a different world. In fact, we will choose a different world — the world will be different a generation from now. The question is…
• We must also address the root cause of tuberculosis, which is injustice. We cannot address it only with comprehensive treatment programs and medications. In a world where everyone can eat, access healthcare, and be treated humanely, tuberculosis has no chance.
• Although published way back in 1952, at the dawn of the antibiotic era, René and Jean Dubos’s The White Plague: Tuberculosis, Man, and Society remains a fascinating read. And for a story of TB written from within, I highly recommend Handaa Enkh-Amgalan[’s memoir].