This is the story of the deadliest infectious disease of all time. It's been with us for three million years, since before humans were homo sapiens. We have evidence of it in the mummies of ancient Egypt, and it's mentioned in the Hebrew Bible. We have made extraordinary medical advances. Vaccines, antibiotics, and clean water have saved millions of lives.
And yet, despite that, in 2022... This disease killed more people than malaria, typhoid, cholera, homicide, and war combined. It has gone by many names. In ancient China, it was known as waifu, meaning destroyed palace. In ancient Hebrew, shakafeth, meaning wasting away.
The 19th century term, consumption, for the way it seemed to consume the body. Today, we call it tuberculosis. But tuberculosis is more than just a disease. It reveals fundamental truths about who we are as human beings and how we have changed or failed to change throughout history.
We're powerful enough to light the world at night. to artificially refrigerate food, to reshape the balance of gases in the atmosphere. And we've even identified the cure to TB.
So why are so many people still dying of it? I've always found it strange that in studying history we tend to focus so little on disease. Something like 90% of people die of disease, a phenomenon so entrenched in human life that we describe many such deaths as natural causes. And yet, if you attend a college survey on the history of humans, you will learn more of wars and empires and trade routes than of microbes.
As Virginia Woolf wrote in On Being Ill, it is strange indeed that illness has not taken its place with love, battle, and jealousy among the prime themes of literature. Or, put another way, Hamlet never gets a headache, but the rest of us do. I suspect that we want to imagine we choose our fate. That human history is largely the story of human choice.
Like, perhaps that's why rumors swirled 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 world's most successful emperor can be felled by mere infection. And yet that is the world we live in, a world where disease shapes history in profound ways.
But also a world where history shapes disease. Like, anyone can get tuberculosis, but not everyone has an equal chance of getting it. And certainly not everyone has an equal chance of dying from it. To understand why, I had to go back, way back. to discover how our earliest understandings of TB evolved alongside culture into the problem we're now facing.
First, let me give you a very basic overview of our current understanding of the disease, which can be summarized as tuberculosis is weird. It's an infectious disease, meaning it's caused by germs. Like COVID-19, it's spread through the air we breathe.
And you might be surprised to learn that around a quarter of all humans are currently infected with Mycobacterium tuberculosis. But only about 5-10% of them will ever progress to what is called active disease, which is when the infection makes you chronically sick. If an infection does proceed to active disease, it usually happens within two years of the initial infection, but TB also may lie dormant for decades before suddenly exploding.
What causes this progression to active disease? Well, again, it's complicated. We don't fully know, but risk factors include malnutrition, lack of access to medical care, crowded housing conditions, and a severely compromised immune system, especially from insufficiently treated HIV infection.
But even once the disease becomes active, its course is extremely unpredictable. It may kill its victims within a few weeks or over many years. It usually attacks the lungs, but can also invade other organs, like the brain or pancreas or spinal column. For reasons we don't fully understand, some patients will recover without treatment.
But most, if left untreated, will eventually die of tuberculosis. Much of the strangeness here is related to the bacterium itself. Mycobacterium tuberculosis has an unusually fatty, thick cell wall, which makes it difficult for infection-fighting cells to destroy the bacteria. So instead, the bacteria is surrounded, first by one white blood cell and then by many, which creates this ball of calcifying tissue called a tubercle. As long as these vaguely spherical tubercles hold the bacteria within them, active disease never develops.
But if the bacteria escapes and the immune system isn't strong enough to surround all the new bacteria with tubercles, the body can slowly be overwhelmed by infection, eventually leading to death. Now, because it takes so long to build the complicated fortress of its cell wall, Mycobacterium tuberculosis has an incredibly slow growth rate compared to other bacteria. Like in laboratory environments, E.
coli divides and doubles about once every 20 minutes. Mycobacterium tuberculosis divides about once per day. And so infections simply take longer to make a person sick.
In short, TB is not like a plague that sweeps through a community where one member of a household gets sick and everyone else in the household is sick three days later. It's not like a cancer or heart disease that affects one person in a home but rarely spreads to others. And it's not like an E.
coli infection where you get violently sick all at once. And being so fundamentally different from other infections is precisely why the classical understandings of tuberculosis varied so widely. and why even today the stories we tell ourselves about the disease reveal at least as much about humans as they do about tuberculosis.
So it wouldn't be accurate to say that we thought of tuberculosis one way or another in antiquity. We thought of it many different ways. Some communities believe the disease was genetic.
Others thought it was contagious. Some thought it was caused by foul air. Others by a disharmony of fluids within the body.
Some even approached a germ theory of disease. Like hundreds of years before humans invented the microscope, the great Persian scholar and poet Ibn Sina wrote that diseases such as TB were caused by tainted foreign organisms that are not visible by naked eye. Which, very impressive. but no way to confirm it pre-microscopy. I 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'm reminded of a short poem by Kurt Vonnegut. Tiger gotta hunt, bird gotta fly, man gotta sit and wonder why, why, why.
Tiger got to sleep. Bird got to land, man gotta tell himself he understand. And this brings us to an important facet of understanding human responses to illness. Stigma.
As part of our desire to answer the question why, why, why by telling ourselves we understand, humans commonly construct moral and ethical narratives around illness. Like, my dad had cancer twice when I was a kid, and I saw some of this firsthand. People kept their distance from us.
Some said he got cancer because his parents 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's also true that the vast majority of people whose parents smoked do not get cancer when they are a 32-year-old father of two young kids. We do not want to reckon with a world that is merely unfair, where some people get sick not because they did something wrong, but because the world is unjust, and insofar as it is just, it's random. And so we tell ourselves we understand, which too often means creating explanations that blame the sufferer. Stigma is a way of saying, you deserved this to happen.
But implied within the stigma is also, and I don't deserve it, and so I don't need to worry about it happening to me. The stigma can become a kind of double burden for the sick. In addition to living with the physical and psychological challenges of illness, there's the additional challenge of having their humanity discounted.
Think of the word universally used in English to describe tuberculosis patients in the 18th and 19th centuries. They were called invalids. They were literally invalid. People living with TB today have told me that fighting the disease was hard, but fighting the stigma of their communities was even harder.
Now stigma is very complex, of course, but researchers have identified certain hallmarks of highly stigmatized illnesses. Chronic illnesses are more likely to be stigmatized than acute ones, for instance, 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. Finally, the origin or perceived origin of a disease also matters.
If an illness is seen to be the result of choice, it is much more likely to be stigmatized. So for instance, people with major depression are often told to just choose to be happier, just as those with substance abuse disorders are told to just choose to quit drinking. And some cancers and heart diseases are stigmatized for resulting from purported choice as well.
Of course, this is not how biology works. Illness has no moral compass. It does not punish the evil. and reward the good.
It doesn't know about evil and good. But we want life to be a story that makes sense, which is why, for example, it was commonly believed up until the middle of the 20th century that cancer was caused by things like social isolation. Parents were actually told their kids got leukemia because they hadn't been adequately loved as infants.
If a clear cause and effect isn't present, we will invent one. Even if it's cruel. Because tigers gotta sleep, and birds gotta land, and man gotta tell himself he understand. TB occupies an interesting place in this conversation. It's a chronic disease with high levels of perceived peril, but it wasn't always understood to be infectious.
And in much of the world, it wasn't seen as a choice. And yet... TB was a highly stigmatized disease.
It was often associated with demon possession or excessive alcohol consumption or moral frailty. But in Northern Europe, beginning in the mid-18th century, it became untenable to understand the disease then known as consumption through only a stigmatic lens. The disease had exploded, especially in Britain's cities and North American colonies.
Stigmatizing away an illness becomes harder When everyone seems to be getting it, not just the poor or the vulnerable, but even the rich. I mean, the richest individual of the 19th century died of TB at the age of 56. It killed presidents and kings and poets and actresses. And so suddenly, consumption became a romanticized disease, a disease of beauty and refinement and intellectual sophistication.
Death and decay are often beautiful. Henry David Thoreau wrote, like the pearly tear of the shellfish or the hectic glow of consumption. So it may be tempting to think that romanticizing a disease would be better than stigmatizing it, but as somebody who suffers from mental illness, I understand firsthand that the two aren't entirely separable. Like, both strategies ultimately other the sufferer, imagining them as somehow removed from the social order. Mental illness is often romanticized as unwellness that brings on creative genius or other superpowers.
But of course, mental illness is also heavily stigmatized in our culture. And so romanticization and stigmatization are essentially like complementary strategies for casting people out of society and finding a story that makes sense for why those people ended up sick. In the case of consumption, this romanticization goes deep and wide.
Like, once you start noticing the impacts of this story on contemporary culture, you start to wonder if there's anything in our lives today that's not connected to TB. So classically, consumption was viewed as a disease of the air. It was an illness of the breath, of the place where the body interacts with the atmosphere. Consider many of our words for the human soul, the Hebrew rock, the Chinese chi, the English spirit, and the Inuit Sila, all derived from words meaning breath or breathing. Breath is life.
To be inspired is literally to breathe in. To be expired is literally to breathe all the way out. And so it was easy to make this disease of breath into a disease of the spirit, the qi, the sila, and the ruach. So much so that at times, consumptives were seen as paragons of brilliance and beauty. In men, consumption was believed to bring creative powers to new levels.
Scholars pointed to the fact that everyone from Stephen Crane to Frédéric Chopin to the sculptor of the Statue of Liberty died of consumption. Less attention was paid to the fact that in a world where roughly 30% of all northern Europeans were dying of a disease, it shouldn't be particularly surprising that many northern European artists and writers were dying of it. But like one magazine at the time linked TB to authors in particular, writing that an author's waywardness, peevishness, irascibility, misanthropy, and murky passions are referable to their constitutional peculiarities and condition.
In simple words, that their mental eccentricities result from the derangement of bodily health. And that's precisely what I mean when I say that romanticization is not a kind or generous way of treating the ill. I am an author, and I for one am deeply offended by the notion that my waywardness, peevishness, irascibility, misanthropy, and murky passions are caused by a derangement of bodily health. Even as I am impressed by a 19th century magazine's ability to absolutely nail my personality.
It's hard to overstate how profound the link between consumption and male creative genius was believed to be. It is said that Victor Hugo's friends, for instance, joked with him that he could have been a truly great novelist if only he'd contracted consumption. 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.
And if men in Northern Europe were believed to achieve via consumption greater artistic and creative heights, then women were believed to become more beautiful and ethereal and wondrously pure. As Charlotte Bronte put it two years after the publication of her novel Jane Eyre, consumption, I am aware, is a flattering malady. That flattering malady, incidentally, would kill Charlotte, and also all three of her sisters. Patients with active TB typically become pale and thin, with rosy cheeks and wide sunken eyes due to the low blood oxygenation and fevers that accompany the disease. Like 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 23 or 24 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. By the time of Eliza's death, so-called consumptive chic had taken over European beauty standards. American and European magazines encouraged women to apply the poison belladonna to their eyelids to dilate their pupils so they could have that wide-eyed consumptive look.
and 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 from runway shows to fashion magazines, these standards of beauty are still molding what is considered to be feminine beauty. But TV shaped not only the makeup and beauty standards of the era, but also fashion, which for women sought to emphasize the visible symptoms of illness.
The most glaring such clothing was the pointed corset, which emphasized the narrowness of women's waists. The similarity, by the way, between waist and waist is an etymological coincidence in English, but a telling one. These corsets were so restrictive that women were limited in the kinds of physical activities they could accomplish and struggled to get full breaths of air, both of which mirrored the experience of actual consumption. And so consumption had become fully glamorous and idealized.
There is a dread disease, Charles Dickens wrote in Nicholas Nickleby, in which the struggle between soul and body is so gradual, quiet, and solemn that the spirit grows light and sanguine with its lightning load. Dickens did not name the disease, nor did his readers need him to. Everyone knew of the disease that shrank the body. and enlarged the soul. But of course this all belies the true violence of consumption.
Perhaps the most famous 19th century victim of tuberculosis was the English poet John Keats. When Keats's body was autopsied a couple days after his death at the age of 25, the doctor wrote, the lungs were completely gone. This was and is the truth of death by tuberculosis. The afflicted often drown as blood and pus fills their lungs. They die starved of oxygen in agony.
Here is where the romanticization of tuberculosis becomes, believe it or not, even more insidious because underlying all these shifts was a feeling that consumption was, as some 18th century observers put it, a disease of civilization. People at the time knew that city dwellers were far more likely to develop consumption than those in rural communities. And this concept of consumption as a civilized disease also meant that it could not be a disease of uncivilized people.
Which led to a racialization of the illness. In Europe and the US, most white doctors believed that TB could only infect 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.
As Frank Snowden writes, In the United States, the prevailing wisdom was that African Americans contracted a different disease. This phenomenon also extended to other colonial empires. Many European colonialists believed that TB was either rare or non-existent among people of color.
In reality, there was extensive illness and death from consumption in colonial South Asia and Africa, and many local health care providers sought to bring attention to the crisis. But it went undetected and uncounted by colonial authorities because the entire premise of colonialism relied on white supremacy and the genetic understanding of consumption relied upon the idea that only supreme people could contract it. Acknowledging that consumption was common among enslaved, colonized, and marginalized people would have undermined not just the theory of consumption, but the project of colonialism itself.
Toward the end of the 19th century, the romanticization of consumption began to decline, as it became increasingly obvious that the illness was not exclusively, or even primarily, a disease of the rich and brilliant. Scholars had begun to turn their eyes away from the languorous, fainting young women and their romantic lovers, write René and Jean Dubot. They noticed instead the miserable humanity living in the dreary tenements born of the Industrial Revolution.
In the tentacular cities they saw hosts of men, women, and children pale too, often cold and starving, working long hours in dark and crowded shops, breathing smoke and coal dust. Tuberculosis was there, breeding suffering and misery without romance. Still, arguments raged over what caused the disease until 1882. when a vexatious little organism called M. tuberculosis was first identified by the physician Robert Koch. Over the next few years, the replication and acceptance of Koch's research meant that the era of consumption as an inherited condition that grew the soul by shrinking the body slowly faded away.
No longer could consumption be understood as an inherited condition shaped by sad passion and wondrously translucent skin.. Now, it was a germ disease, an illness of filth and overcrowding and poverty. The era of tuberculosis had begun.
From your local tuberculosis association. Today, we understand the explosion of TB in the 19th century to have been primarily a result of the Industrial Revolution, which led to cramped living conditions in cities where workers could easily spread TB to one another, and where widespread malnutrition—an important risk factor for developing active disease—made people especially vulnerable. And so just as Britain was ground zero for the Industrial Revolution, it was ground zero for the rise of tuberculosis. And we've seen TB grow with industrialization in other communities as well, from India to Nigeria.
TB's parallel journey with capital, as Vidya Krishnan puts it, has been seen in outbreak after outbreak. But at the time, industrialization wasn't seen as the culprit. Instead, as understandings of TB shifted to being about poverty rather than romance, racialized stigma did a 180, whereas before black and brown people were seen as incapable of getting such a beautiful disease, now they were blamed for it. The Negro race suffers from tuberculosis tainting the country, one American official wrote.
Racialized medicine no longer maintained that high rates of consumption among white people was a sign of white superiority. Instead, racialized medicine now maintained that high rates of consumption among black people was a sign of white superiority. But of course none of that was true.
Black people were not more susceptible to TB because of factors inherent to race. They were more susceptible to tuberculosis because of racism. TB especially preys on those who are marginalized not because of their choices or habits, but because they are marginalized.
It's important to note that all this racialized medicine was challenged. It was obvious hogwash from the beginning. and there was loud rejection, especially from black healthcare workers. After a white doctor claimed the Negro is to blame for his own susceptibility to tuberculosis, a black physician wrote a response arguing that this kind of racialized medicine smacked more of the cheap politician seeking notoriety and office by playing to passion and prejudice than a doctor discussing philosophically a scientific subject for the diffusion of knowledge. which is the doctor version of an extraordinarily sick burn.
And in fact, this bias against marginalized people and the healthcare workers serving them has proven to be one of the great facilitators of tuberculosis over the last century. Even after establishing that tuberculosis was an infectious disease caused by a bacterium, nobody was quite sure how this disease spread. But man gotta tell himself he understand, and so attention came to focus on the kinds of places and environments that seemed to foster outbreaks of tuberculosis. Crowded housing tenements and dirty factories.
Some public health efforts did make a significant impact, covering one's cough or sneeze with a handkerchief, which really did lessen the risk of spreading TB, as did discouraging spitting in public places like trolley cars and sidewalks, which was common in the US at the time. People were also told not to kiss babies or kiss at all. Another obsession was with dirt and dust, which 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 Bowers in 1916. 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. Vidya Krishnan points out that as women's hemlines rose a few inches at the beginning of the 1900s, shoes became an important feature of women's fashion. By the early 20th century, entire industries had grown up in the U.S. to try to treat tuberculosis.
I got the blues, the TB blues. I got the heebie-jeebie TB blues. Dry air, sunshine, and rest were believed to be the best available treatments, and so sanitariums were...
where consumptives could rest and breathe fresh air popped up around the world. Southern California came to be known as the Land of New Lungs, and in a mass migration that rivaled the Gold Rush, consumptive patients traveled west and, if they survived, began families, which reshaped the landscape of the United States. By 1920, around 10% of all people living in New Mexico were TB patients living in sanitariums, where the dry air and open spaces were said to heal the lungs. Aiming for that knockout showdown, building to that special day, when the dark can say be on your way.
Life in these sanitariums could be excruciating. dull for the sufferer. The job of the so-called invalid was to improve their health by lying very still. Like one sanitarium patient, Elizabeth Mooney, wrote I do nothing all day except lie here staring at the mountains. I wish they would rearrange them a bit.
Family members were discouraged from visiting the sick, not only because visits risked spreading infection, but also because visits were seen as detrimental to health. People might get excited. and you couldn't be excited because you had to rest.
Often you were discouraged even from reading books. And there was no YouTube. Many patients did recover in sanitariums. Rest and adequate nutrition are much better for the body than malnourishment and stress.
But recovery rates don't seem to have been much higher for those taking the so-called traveling cure than for those who lived at home as invalids. Nonetheless, separating millions of the ill from their homes did decrease the spread of the disease within families, and combined with better overall nutrition, safer housing, and lower rates of poverty, tuberculosis declined around the world. Between 1882 and 1930, overall mortality from the disease in the U.S. fell by around 80 percent.
But those improvements were not evenly distributed in the American population. The declines for African Americans and Chinese Americans were much lower, and for indigenous people there was very little decline at all. Even as we developed better tools to diagnose and treat tuberculosis, including everything from the stethoscope to the x-ray machine to chest drains, the illness was still fundamentally incurable.
But then, between 1940 and 1965, Eight different classes of drugs that kill M. tuberculosis were discovered and synthesized. There was, however, of course, a catch. Because the tuberculosis bacteria, with its waxy coating, is uncommonly hard to kill, each of these drugs needed to be administered long-term in order to be effective, and that meant the bacteria had more time to develop resistance to drugs. On top of that, No single drug was capable of curing TB on its own, so it wasn't until the mid-1950s that a combination treatment involving three different drugs was tested and approved, and for the first time in human history, tuberculosis became curable.
As treatment, case finding, and contact tracing improved, new cases of TB were able to be identified and treated, But in impoverished communities, which had for so long been believed by the rich world to be immune to TB, the illness continued to kill millions every year. Attempts to get combination therapy to colonized regions were haphazard and inconsistent, forcing many people in poor communities to find whatever antibiotics they could, regardless of their effectiveness against TB. In 2000, the Ugandan physician Dr. Peter Mugeni gave a speech about the global failure to get HIV drugs into impoverished communities. Where are the drugs? He asked.
The drugs are where the disease is not. And where is the disease? The disease is where the drugs are not. So too was the case with tuberculosis. By the mid-1960s, curative therapy for TB was available everywhere.
except for where it was most needed. I mentioned earlier that in the 25 years between 1940 and 1965, eight different classes of drugs were developed to treat tuberculosis. And then in the 47 years between 1965 and 2012, no new drugs were synthesized to treat tuberculosis.
The reason for this is straightforward. As TB declined in rich countries, the profit incentive for researching new drugs went away, and as a result, funding dried up. When TB ceased to be a problem of rich people, it not only ceased to be romanticized, it also ceased to exist in the minds of many. But a system of pharmaceutical research driven exclusively by profit incentive is of course not the only way to develop drugs.
As Dr. Carol Mitnick has told me, the failure to develop drugs for illnesses that are not seen as profitable 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. In short, there is nothing inevitable about living in a world where developing drugs that lengthen eyelashes is more highly rewarded than developing drugs that treat. tuberculosis.
So all of this combined to keep the rates of TB deaths steady in much of the developing world, even as it declined precipitously in rich nations. And then, beginning in the early 1980s, physicians and activists in the Global South began to sound the alarm about an explosion in uncommonly swift and severe tuberculosis deaths that seemed to be associated with a new pandemic. that of HIV AIDS.
Because untreated HIV lowers resistance to infection, TB infections are far more likely to progress to active disease as the immune system weakens. And although many were pointing out this connection in the mid-1980s, far too little was done to expand access to either TB or HIV medications. This inaction contributed to tens of millions of deaths from the intertwining pandemics of HIV and TB.
In fact, between 1982, when the term AIDS was first used, and 2005, when HIV deaths in poor countries finally started to decline thanks to increased access to treatment, roughly as many people died of tuberculosis as died in World War I and World War II combined. At a TB conference not long ago, I met a young South African woman named Fumeza Tisile, who was diagnosed with TB as a teenager. She'd just received a full scholarship to university, but from the start of her freshman year, something felt off. She'd lost weight and was experiencing shortness of breath, eventually struggling just to walk upstairs. So I went to the clinic and coughed into a cup, she explained to me.
Although we now have extremely accurate molecular tests for TB, they remain unnecessarily expensive. And so TB is still most commonly diagnosed via a person looking at a sputum sample through a microscope and trying to identify TB bacteria in that sample, which is exactly how Robert Koch diagnosed TB in 1882. Unfortunately, microscopy misses about 50% of positive cases. And Fumeza was told, catastrophically, that she was negative for TB.
But she kept getting sicker. She had to drop out of school, her weight dropped to 70 pounds. I was really struggling to breathe, she remembered.
And then finally she received a chest x-ray, whereupon it was obvious that tuberculosis was everywhere in her lungs. She started on a standard TB treatment immediately. Now Now, I have to take a little detour here to explain a protocol that's been around since the late 1970s called Directly Observed Therapy Short Course.
The thing to understand about DOTS is that it really only exists because of a lack of trust that certain patients will take their medications consistently. You might recall that TB is particularly susceptible to developing antibiotic resistance, which is worsened by haphazard treatment. So the idea behind DOTS is to have a healthcare professional directly observe patients taking their medicine every day. And in the beginning, this protocol did help because any regular access to adequate supplies of appropriate antibiotics was good news. But requiring patients to find their way to a clinic or doctor every day for months, or else live in inpatient facilities to receive their daily medications?
creates extreme challenges for many people with TB. As Dr. Jennifer Furin put it to me, tuberculosis is the only disease I know where the core of therapy is based on fundamental mistrust. Now it has long been argued that antibiotic resistance is driven by so-called patient non-compliance, which is to say patients failing to take their medication.
And it is true that many TB patients fail to complete their full regimen. But the concept of compliance turns out to be really complicated when you zoom in to the level of individual patient experience. By the time she was finally diagnosed, Fumeza could not walk to the clinic by herself. She was simply too sick.
And public transport was expensive, not to mention the potential to spread the illness. Did her inability to access daily treatment make her non-compliant? Fortunately, Fumeza was able to avoid DOTS because South Africa had recently begun allowing seriously ill people to take home two weeks of treatment. But after two weeks, she had to return to the hospital for more medicine, and it was clear she was getting no better. Eventually, Fumeza was hospitalized, and after months of treatment, it was discovered that the drugs were failing because Fumeza had multidrug-resistant tuberculosis, also called MDR-TB.
When she learned of her diagnosis, she told me, I was searching stuff online and it was really, really scary to see because on Google, so many of the people on images were already dead. Their ribs were exposed and I thought I was going to be like that too. I thought I was likely going to die. At this point, the only treatment regimen available to Fumeza involved painful injections and dozens of pills taken each day. And the injections came with a very high risk of permanent hearing loss.
One day, as Fumeza put it, I just woke up and everything was quiet. As it turned out, Fumeza didn't have MDR-TB. Her particular strain of tuberculosis was resistant to even more drugs, making it pre-XDR-TB, or pre-extensively drug-resistant tuberculosis. The painful injection she received that caused permanent and total hearing loss for four years until she received a cochlear implant?
That drug didn't help her at all. If Fumeza had been able to access molecular testing, or if her TB had been ...directly identified from the beginning, she could have been saved her hearing and so much suffering. Instead, she was in treatment for tuberculosis for three years and eight months, during which time she took between 20 and 30 thousand pills before finally being cured.
For many patients, this is still the reality in 2024, even though we now have treatment protocols that can cure patients with drug-resistant TB within just six to nine months with five to seven pills per day. These drugs and protocols are only beginning to reach those who need them most. But each year, more people are accessing these better treatments, albeit belatedly.
And that is due, in no small part, to Fumeza herself. Today, she's a college graduate, a sociologist, and a leading voice in the fight against tuberculosis, whose efforts have helped increase access to life-saving drugs. But I ask you to act now.
I ask you for change. Thank you. Vidaquiline, first released in rich countries in 2013, is a critical medication for treating drug-resistant tuberculosis, but for years the price had been artificially high due to a lack of competition. With support from the organization Doctors Without Borders, Fumeza and her friend Nandita Venkatesan filed a lawsuit in India to prevent the pharmaceutical company Johnson & Johnson from extending its patent on the drug past its initial 2023 expiration date.
Fumeza and Nandita succeeded in convincing Indian courts that J&J shouldn't have a forever patent on this critical drug, which eventually allowed for generic competition and far less expensive bedaquiline. Experts estimate that over 50,000 people with MDR-TB will receive treatment every year who otherwise would have had little, if any, chance of being cured. Many people with TB have survived because of Fumeza's work expanding access to diagnosis and treatment. And at the same time, she herself only survived because of activism and innovation that preceded her.
Until quite recently, the World Health Organization's recommendations for people like Fumeza with drug-resistant TB was supportive care, which Dr. Carol Mitnick summarized to me as put people in a hut by the side of the road and wait for them to die. But in the late 1990s, Partners in Health, known as Sociosan Salud in Peru, proved via a study that similar cure rates for MDR-TB could be achieved in poor communities as were achieved at the world's finest hospitals. Still, many of the drugs that effectively treat highly resistant tuberculosis remain very expensive, not because they are made of gold or platinum or because we have to fly to the moon to find them.
They are expensive because, one, prices are kept artificially high by pharmaceutical companies, and two, we are afraid that making these drugs less rare will lead to further antibiotic resistance. And listen, I understand the fear of antibiotic resistance. This isn't just about TB. The idea of a world where we cannot treat bacterial infections is indeed terrifying. But that should never mean that we reserve the most powerful and efficacious drugs for the rich.
I would not accept my child being denied the best available treatment for TB. How can I ask Fumeza's family to accept such a world? I asked a tuberculosis doctor, KJ Sung, recently, of the 1.5 million people who will die of TB this year.
How many would survive if they had access to the kind of healthcare afforded to the wealthy in the UK or Japan or the US? After all, while TB is often curable now, it remains a difficult disease to treat, especially in cases of extensive drug resistance. How many would die if everyone could access good healthcare?
He asked me, as if confused by my question. Yeah, I said. None.
Zero. Zero people should die of TB. We could choose to live in a world where no one dies of TB. That choice would require sacrifices.
As most choices do, it would involve long-term, large-scale investments by rich countries to strengthen the healthcare systems of impoverished countries. And it would require the training and employment of far more healthcare workers, and likely investments in new treatments. But we could choose that world. And instead, we choose this world.
And that is why I would submit that TB in the 21st century is not really caused by a bacteria that we know how to kill. As Dr. A. Wilberforce Williams correctly noted over a century ago, The real causes of TB are poverty, bad housing, bad sanitation, bad working conditions, long hours, high rent, and poor food. To put it another way, in the 21st century, the real cause of contemporary tuberculosis is, for lack of a better term, us.
And that's bad news. But it is also good news. In 1800, there was nothing anyone could do to stop people from dying of TB.
But we no longer live in that world, thanks to the accumulation and dissemination of knowledge about the illness and how to treat it. If we are the cause of TB, we can also be the solution to TB. And that's the challenge I want to leave you with.
In 2000, around 2.3 million people died of tuberculosis. In 2021, 1.5 million did. In 2032, that number could decline by half or even more. Millions of lives can be saved in the next decade if we pressure our governments and other institutions to invest more in research and the global effort to provide curative therapy. We've done this successfully before thanks to the hard work of activists, researchers, and healthcare workers.
Access to HIV treatment has dramatically expanded in the last two decades. Malaria deaths have dropped precipitously. And I know, treating TB is complex. It has always been a strange disease.
But it is curable. We can live in a world where no one dies of tuberculosis. We are the cause. But we can also be the cure.
Thanks for watching our very first Crash Course Lecture Series. Do you want to see Crash Course do more videos like this? What other topics would you like for us to cover? Let us know in the comments below. If you're interested in the ongoing fight to end TB, I'd encourage you to check out the TB Fighters community at tbfighters.org.
Where lots of people have worked together to achieve astonishing success in lowering the cost of treatment and diagnostics. Also, your attention matters. We tend to address the problems we pay attention to. And so we need more people like you who make it all the way to the end of very long videos about tuberculosis.
This video was filmed here at the Indiana Medical History Museum and was made with the help of all of these nice people. If you want to help keep Crash Course free for everyone, forever, you can join our community on Patreon.