John Green’s Everything is Tuberculosis 

In his introduction, John Green poses a conundrum:  “We are powerful enough to light the world at night, to artificially refrigerate food, to leave Earth’s atmosphere and orbit it from outer space. But we cannot save those we love from suffering. This is the story of human history as I understand it—the story of an organism that can do so much, but cannot do what it most wants.” (3-4) Everything is Tuberculosis then works toward the uncomfortable solution to at least one aspect—one global aspect—of the problem of suffering. 

Green’s interest in tuberculosis began in 2019 when he met a young man named Henry at Lakka Hospital in Sierra Leone. At first Green believes Henry is a child because he’s so small. When he wonders aloud about Henry being so smart and well-spoken, he’s told that Henry is eighteen, but his physical development has been arrested by treatment-resistant tuberculosis. Over time, Green befriends Henry, learns about TB and dedicates himself to eliminating it. Knowing Henry changes Green’s life.

A bit of the history of TB

In Everything, Green alternates discussion of Henry’s journey to wellness with humanity’s millenniums-long battle against TB. 

TB appears to have been among us since we’ve been human. “But recent genetic evidence indicates that the story might go back much further—our species is perhaps 300,000 years old, but it seems that other species of hominids were being infected with consumption-like illnesses 3 million years ago. In fact, tuberculosis is listed in Guinness World Records as the oldest contagious disease.” (30)

Green makes many connections between cultural changes over the past few centuries and TB. Some are simply interesting: John Stetson went west in the 1850s to cure his TB and came out to invent a useful hat for the environment; New Mexico’s bid for statehood was bolstered by its becoming a destination for ‘consumptive care’; Sir Arthur Conan Doyle debunked a false cure for the disease; and women’s skirts became shorter so as not to drag in the dirt and bring along TB bacteria. Other cultural changes connected to TB are more consequential, including the view of the TB patient as a sensitive and angelic figure. The look of the dying patient—languid, very pale/white, and thin—became the ideal female look, much to the detriment of women of all shapes, sizes and colors ever since.

Humans give TB a big helping hand

Most importantly, “The infection has long exploited human biases and blind spots, wriggling its way through the paths injustice creates. Of course, tuberculosis doesn’t know what it’s doing, but for centuries, the disease has used social forces and prejudice to thrive wherever power systems devalue human lives.” (19)

That social forces and prejudice are at fault for the continued TB epidemic is the primary argument of  Everything. It begins with western empires using countries like Sierra Leone for resource extraction. In doing so, the wealth of the country is removed and there isn’t investment in the things a society needs, including railroads, hospitals, and schools. Add to this the slave trade where people could be kidnapped on their way to market their goods (so they lose economic opportunities by not doing that) and you have a society that isn’t set up to battle disease with education or resources. 

Bad social policy affecting disease continues into the first half of the twentieth century. An egregious example is the forcible removal of Indigenous North American children from their homes to residential schools, which led to the spread of TB among them. “Indigenous people were more than 10 times as likely to die of TB than white Canadians. But in residential schools, the rate was 8,000 per 100,000–meaning that 8 percent of all kids confined in the schools died of tuberculosis each year.” (85)

Even in the contemporary world, resources in place can be wiped out. For example, in Sierra Leone, the Ebola outbreak of the 2010s killed many healthcare workers. “At least 221 Sierra Leonean healthcare workers died of Ebola between 2014 and 2016, including many of the nation’s most experienced physicians, nurses, and community health workers.” (47) In addition, healthcare grants end and projects end up half-finished. But we don’t think about the consequences of all these factors.

“In my college survey course about the history of humans, I learned of wars and empires and trade routes, but I heard precious little of microbes, even though illness is a defining feature of human life.” (29)

Contagion

While we don’t learn about it in school, TB is wildly contagious. “The average untreated case of active tuberculosis will spread the infection to between 10 and 15 people per year. … M. tuberculosis is a near perfect human predator in part because it moves very slowly. The bacteria has an uncommonly slow growth rate. While E. coli can double in number about every 25 minutes in a laboratory environment, M. tuberculosis doubles only about once per day…” (34)  This sounds like it would be a good thing, but M. tuberculosis builds an unusually fatty, thick cell wall, which means white blood cells have a tough go penetrating it to find and kill the bacteria from within. And while a small minority of people will recover from TB without treatment, it generally, eventually, kills the infected. 

 Adding to the problem is that poor countries don’t have the money to effectively diagnose TB on a mass scale. In many places, including in Sierra Leone where Henry lives, TB is most often detected by microscopy (sputum on a slide under a microscope). But this misses about half the cases and particularly misses those in children. X-ray detection is much more accurate, but less affordable. 

The first-line drugs to treat TB are over fifty years old. Little research is done because there’s no large payout for pharmaceutical companies. Wealthy countries used x-rays and isolation to suddenly and significantly decrease infection to the point where people don’t even think about it. Most people who now become infected live in poor countries and don’t have the money for expensive treatments. In fact, Green points out that early in treatment, as people become better, they get their appetite back (TB diminishes it) and the antibiotics are painful to take on an empty stomach. So—patients are ravenously hungry and in pain from the meds, but don’t have the money for more food. They stop their treatment.

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 hopes that she wouldn’t be crushed by the truth. In Angie’s father, we see the humanity of people whose lives are torn asunder by TB—a humanity that is too often denied or minimized through stigma or romanticization. He was just a father trying to do right by his kids—and then, when he couldn’t, trying to do right by his kid. (107)

All of this adds up to a failing on the part of humanity, on the part of relatively wealthier peoples and nations. Mobile chest x-rays machines can be carried via backpack to serve rural communities if they are purchased. Children will not get bone TB from milk that is pasteurized. The BCG vaccine for TB is over 100 years old and not always effective. We need research into a new vaccine. We need new treatment protocols that don’t isolate patients or force them to take their medicines in the presence of a healthcare provider, a thing which is very difficult for the poor to do (and if stopped, can cause a more resistant form of TB). 

“Is it a patient’s fault if they are too disabled by depression and isolation to follow through on treatment? Is a patient’s fault if they or their children become so hungry that they feel obliged to sell their medication for food? Is it a patient’s fault if they’re living conditions or concomitant diagnoses, or drug use disorder, or unmanaged side effects, or … stigma result in them abandoning treatment?

Why must we treat what are obviously systemic problems as failures of individual morality?” (124)

Hope

By interweaving Henry’s story into information on the history and treatment of TB, Green repeatedly reminds us that the answers to the above questions are ‘no.’ We see Henry as “a human individual who wrote lovely paragraphs and poems, who encouraged not just fellow TB survivors, but also his caregivers… as a valuable person interwoven into the one human story.” (126)

“The underinvestment in new classes of drugs to fight bacterial illness is the central cause of growing antibiotic resistance. It’s easy to blame patients or providers or pharmaceutical companies, but really all of humanity has collectively chosen not to put more of our shared resources toward new treatments for disease. Some of this can be chalked up to our economic systems—the newest antibiotics will not be prescribed as often, meaning they won’t be as lucrative as, say, developing a drug that hundreds of millions will take to control blood pressure. This is why when new antibacterial drugs do come out, they’re often priced very highly.

“But the market may not be the only determinant of human health. Instead, we could invest more public and philanthropic money into research and development of drugs, vaccines, and treatment distribution systems. We could re-imagine the allocation of global healthcare resources to better align them with the burden of global suffering— rewarding treatments that save or improve lives rather than treatments that the rich can afford.” (129-30)

High school housekeeping

Teen readers have loved John Green for a few decades now. While this nonfiction plea is a departure from his YA fiction, they will love it as well. There are many more interesting and weird connections between culture and TB—Adirondack chairs, Pasadena, CA (yes, home of the Rose Parade was founded by and for people with TB). Ringo Starr survived TB. But teens will primarily enjoy reading Everything because it brings empathy to a human problem. They might also be astonished by the practices of pharmaceutical companies such as Johnson & Johnson applying to extend their patents when the drugs should have gone generic (and thus become vastly cheaper) by trying to file and enforce secondary patents. Conversely, Green details how a virtuous cycle works and this encourages teens to become a part of one.

Bonus: John Green Interview

I am lucky to have wonderful writing companions, one of whom let me know that John Green was a guest on the Daily Show, discussing Everything is Tuberculosis. He is funny, self-effacing, and smart. Have a watch. 

John Green – “Everything Is Tuberculosis” | The Daily Show