Source of book: I own this
This book was this month’s selection for the Literary Lush Book Club. Alas, again I was unable to attend the discussion, as it was Memorial Day weekend, a traditional camping date for my family. I did, however, read it.
I will admit, this was not a book I expected to exist. John Green is most famous for his YA fiction, not for non-fiction. This book isn’t the sort of meticulously detailed pop-science book one might assume, but rather a combination of history, science, and personal experience. It is the book that someone like John Green can write without having to explain, because he has already proven he can sell.
Which, actually, is a good thing, because I think the book is more likely to resonate with an important audience than a purely scientific one would.
The book had its genesis in a trip that Green took to Sierra Leone, in west Africa, for research on maternal mortality. I was not aware of it, but Green is a trustee for Partners in Health, an organization working to reduce maternal and infant mortality around the world.
While on this visit, Green was talked into a side trip to a tuberculosis hospital, where he met Henry, a young man fighting drug resistant TB. From this, Green’s OCD took over, and he ended up writing a book.
I want to state a few things up front. First, Green is an unashamed liberal bleeding heart, and I mean that in the best of ways. He is the seemingly rare American who gives a fuck about brown people on other continents, and believes that the work we do to make a better world ultimately helps us too.
And Green is 100% right about this. The MAGA ethic of “America only” is short-sighted and will ultimately do nothing but kill and harm Americans in the long run.
Nowhere is this more clear than when it comes to tuberculosis.
In the history of the human species, there are two clear front-runners for the most deadly diseases of all time. Malaria has a strong claim. So does tuberculosis.
However, unlike acute (if recurrent) diseases like Malaria, Tuberculosis is a slow killer. It can stay dormant for decades, emerging long years after infection. Some humans successfully wall off the bacteria in “tubercules” while others succumb. Although, as for pretty much every disease, poverty and malnutrition increase mortality and morbidity, tuberculosis can and does kill without regard for money. It has only been our ability to kill it with antibiotics that has kept it from continuing to be a scourge worldwide.
Green is also 100% correct that we could have eliminated TB worldwide decades ago had we been willing to actually invest the resources to do so. Our failure to do so has allowed drug resistant TB to develop and become more prevalent. For now, because TB is relatively infrequent in wealthy countries, we justify to ourselves letting others die, because they are just “those people.”
In reality, if we lose the ability to kill TB, it will return and become once gain the great killer it was a mere 100 years ago. Our selfishness puts ourselves at risk too.
Another strength of Green’s perspective is that he gets the challenges of treatment, particularly when poverty is involved. As regular readers of my blog know, my wife is a nurse, and spent over 20 years working in the ICU, where tuberculosis was a shockingly regular diagnosis. She also has training and experience in public health as part of her current education and role.
We have talked about the issues regularly - we both are pretty nerdy. There has been plenty said in the media about “non-compliant” patients, and not all of it helpful.
There are, after all, different kinds of non-compliance. There are some willful patients who, as soon as they start feeling better, cannot be bothered to complete the entire course. But there are others - and this book looks at them carefully - for whom life circumstances are at the root of the problem.
For many, affording food without being able to work is a problem. For others, the hours needed to travel. And there are so many factors. Treating TB is therefore more than just a quick pill - it requires honest acknowledgement of systemic poverty and injustice, and strategies to tackle all of the underlying issues together.
The book gives the history of TB, diagnosis, and treatment, and there are some quite interesting things in it, from the medical fraud of Robert Koch (he faked results to sell his “cure” - thus destroying his reputation gained painstakingly earlier in his career) to a transgender doctor whose protocols are still in use today.
Because Green is a writer first, there are so many excellent lines and passages. He tells a story well, and he presents cogent arguments. I’ll hit a few of the best, but I really strongly recommend reading the entire book.
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 essence, the rich countries refuse to provide life-saving drugs to the third world at affordable prices. This applies not only to TB, but also to AIDS and malaria, and other diseases. This will eventually bite us in the ass.
Next up is a fascinating look at the history of Sierra Leone. Because there are important lessons to be learned here. One of the lies that we Westerners love to tell ourselves is that “colonialism built infrastructure.” The problem is, that infrastructure was designed to facilitate the stripping of natural resources from the land as efficiently as possible, not to benefit the population.
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.
I noted several lines from the chapter arguing that treating disease has made huge changes in human life - most children used to die before growing up, for example. He quotes a Presbyterian pastor who supervised him when he worked as a student chaplain at a children’s hospital during his college years.
On my first day of training, she said to me, “Death is natural. Children dying is natural. None of us actually wants to live in a natural world.”
Green also notes that humans have a craving to understand why things happen. And our explanations are often neither accurate nor helpful.
“Nothing is more punitive than to give a disease a meaning,” Susan Sontag famously wrote, and yet we go on giving meanings anyway. These illness narratives are often not just a strategy for conceptualizing the pain of others, but also a way of reassuring ourselves that we’ll never feel that pain.
Unfortunately, this blaming of illness on the ill has made a comeback, and is now government policy under the Trump Regime. As is the Eugenicist approach to public health.
Later in the book, Green talks about his father’s cancer struggles in his 30s, and the way that people blamed it on him.
Framing illness as even involving morality seems to me a mistake, because of course cancer does not give a shit whether you are a good person. Biology has no moral compass. It does not punish the evil and reward the good. It doesn’t even know about evil and good.
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.
Green explores the different beliefs about TB, from the idea that people brought it on themselves through less-holy living, to the “dying artist” trope, to the more modern view of TB as something only poor people get.
Particularly amusing (in a dark way) was that some US physicians worried that as TB rates declined, so would the quality of American literature.
Far less amusing is the way that dying of TB came to be associated with beauty. The dilated eyes. The pale cheeks with red glow. The emaciated bodies.
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.
I also have to quote this passage just because it is so good.
History is often imagined as a series of events, unfolding one after the other like a sequence of falling dominoes. But most human experiences are processes, not events. Divorce may be an event, but it almost always results from a lengthy process - and the same could be said for birth, or battle, or infection. Similarly, much of what some imagine as dichotomous turns out to be spectral, from neurodivergence to sexuality, and much of what appears to be the work of individuals turns out to be the work of broad collaborations. We love a narrative of the great individual whose life is shot through with major events and who turns out to be either a villain or a hero, but the world is inherently more complex than the narratives we impose upon it, just as the reality of experience is inherently more complex than the language we use to describe that reality.
This comes in the midst of the story of Robert Koch, who indeed furthered the cause of science, before succumbing to the temptation to cash in. I recommend reading about him in more detail.
Another rather unsavory story in the book is the way that TB became yet another means of racism in the US. After decades of denying that black people could catch TB (and thus they were not treated), some white doctors went on to argue that it was the end of slavery that caused the spread of TB among black people. I guess since it wasn’t diagnosed or treated, it was “rare” back then.
Green points out the truth here, though:
People who are treated as less than fully human by the social order are more susceptible to tuberculosis. But it’s not because of their moral codes or choices or genetics; it’s because they are treated as less than fully human by the social order.
Also a terrible facet of human nature was displayed in the chauvinism between the French and Germans during the Franco-Prussian War, during which the two sides competed to treat disease, rather than cooperating. (This is one reason Koch yielded to temptation: it seemed the French were making all the actual cures.)
I find it interesting that even here, in the supposedly pure world of science, we feel the weight of historical forces pressing in upon discovery. Our desire to create outsiders, the competition for resources among communities that would be better off cooperating, and our long history of warfare all come together in this moment of discovery.
This will be, in my opinion, the historical judgment of the Trump Era. The US decided to commit suicide because of its obsession with creating outsiders, and seeking to dominate rather than cooperate. Even if we don’t become an authoritarian hellhole, the damage to international relationships, higher education, and the social fabric will take decades to repair, during which time China and others will pass us in all the areas we used to lead.
The chapter on why disease treatment needs to be focused on care, not on control is excellent. This footnote is on point:
It is critical to control outbreaks of infectious disease, but such efforts can be counterproductive if elements of care are abandoned in the pursuit of control. Many TB survivors have described to me the dehumanizing process of receiving their medication, for instance. More than one has told me that they were told to stand in a corner and then thrown their medication from across a room because healthcare workers were so afraid of TB. But with appropriate masking and infection controls, there’s very little risk to healthcare workers if they hand medications directly to those living with TB. This sort of basic humanizing treatment goes a lot way toward helping those with TB complete their treatment regimens, which is to say that care-focused treatment often controls the disease better than control-focused treatment.
Later, Green talks more about “compliance” and its relation to past (unsuccessful) attempts at control-based disease control.
More broadly, is it a patient’s fault if they are too disabled by depression and isolation to follow through on treatment? Is it 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 their living conditions, or concomitant diagnoses, or drug use disorder, or unmanaged side effects, or societal stigma result in them abandoning treatment?
Why must we treat what are obviously systemic problems as failures of individual morality?
(One answer, unfortunately, is that our society is built on white supremacy, and addressing systemic problems would challenge the inequality.)
Speaking of humanizing people, have you ever heard of Dr. Alan Hart? He was instrumental in the fight against tuberculosis by developing and implementing the use of chest X rays to screen for TB. His methods are still in use today, and have saved literally millions of lives.
He was also transgender.
Transgender people have always existed in society, and are a normal part of nature, yet are all too often persecuted and marginalized by society because they challenge the gender hierarchy. Dr. Hart was repeatedly outed and forced out of jobs where he was doing good work, simply because people were uncomfortable with his existence. We continue to see this today, to the detriment of society.
Green tells his story, including all the ugly bigotry he faced. It’s a good read.
The book can be quite humorous at times too. Green has a great way with words, and a keen sense for the absurd. For example:
There are many acronyms in the world of tuberculosis. Global health, like any field, loves to shorten its phrases to make them obvious to experts and inaccessible to neophytes. From BPaLM to PMDT, from GDF to ERP, there’s a pretty good chance that if you just string some letters together, it’ll mean something in the context of TB.
Take it away, Dilbert:
I also want to mention Green’s excellent look at the problems posed by basing nearly everything on the profit motive. This is, of course, the whole point of DOGE and Trump’s dismantling of the federal government. The public sector does the things that do not lead to individual profits for the rich, but benefit everyone. Things like education, roads, and in civilized countries, health care. And also scientific research, one of the things clearly on Trump’s bad list.
But the market need 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 reimagine 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. 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. And we are not stuck with that inventive structure. I know, because the two most recent drugs developed to treat TB, bedaquiline and delamandid, were both funded primarily by public money.
This isn’t so much about being cheap as about prioritizing short term profits for the few over the long-term wellbeing of everyone.
When we do consider the long-term costs of failing to use all the tools at our disposal, the value calculus changes. From that perspective, investing in tuberculosis diagnosis and treatment begins to look like one of the best bets in public 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.
This is a problem that goes far beyond global health. It has made American society into what can really only be described as a shithole of selfishness. One where supposed “christians” yell that empathy is a sin. One where corporations cut corners in ways that risk their long-term viability (see: Boeing) to chase immediate profits. One where social media fails to live up to its potential and instead becomes a cesspit of conspiracy theories, Russian bots, and endless advertisements.
Cory Doctorow describes this as “enshitification,” and it has corrupted pretty much everything in our society these days. MAGA is just the most vulgar manifestation of the monetization of everything and the focus on short-term feel-goods over long term planning and action.
This worldview also misses that everything is interconnected. We can’t just hole up in our bunkers and hope the future pandemics miss us. We can’t just let germs develop superpowers in the third world and hope our rich white skins will protect us. In that regard, MAGA has sown the seeds of its own destruction - which maybe they are fine with if the brown people die first?
Green spends a chapter discussing drug resistance, and the risks it poses for the future.
The fearmongering around superbugs can serve a purpose - it is one strategy for getting people in wealthy communities to care about TB. It may not be at your doorstep yet, but by the time it is, it’ll be too late.
In the case of TB, this won’t happen overnight - it isn’t the quick spreading and quick killing bug that, say, the next Bird Flu could be. (Related: Trump and MAGA don’t want to spend money to prepare for the next flu either…) But not that long ago, TB was a global crisis that killed huge numbers of people. It could be again.
But as Dr. Carole Mitnick said to me once, “This 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.” And so we must fight not just for reform within the system but also for better systems that understand human health not primarily as a market, but primarily as a shared priority for our species.
I could not have put it better. I’ll end with this:
We can do and be so much more 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.
For all of us humans of good will, this must be - and indeed will be - our goal. Not just for our fight against pathogens, but in all the intersecting injustices and inequalities that deny that other humans deserve to be alive in the world.
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