Synopsis: John Green tells a deeply human story illuminating the fight against the worldâs deadliest disease
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.
In 2019, John Green met Henry, a young tuberculosis patient at Lakka Government Hospital in Sierra Leone while traveling with Partners in Health. John became fast friends with Henry, a boy with spindly legs and a big, goofy smile. In the years since that first visit to Lakka, Green has become a vocal and dynamic advocate for increased access to treatment and wider awareness of the healthcare inequities that allow this curable, treatable infectious disease to also be the deadliest, killing 1.5 million people every year.
In Everything is Tuberculosis, John tells Henryâs story, woven through with the scientific and social histories of how tuberculosis has shaped our world and how our choices will shape the future of tuberculosis.
John Green’s
Everything Is Tuberculosis is everything I want in a book about tuberculosis that I can hand to laypeople. It’s scientifically up to date, and it’s clear that TB is a curable disease which we’re collectively
choosing to inflict on the world’s poorest and most disadvantaged. It’s a disease of inequality and inequity, and Green nails that.
He’s less clear, I think, on how you fix it: he talks about drugs, but the historic example of most of Europe and the USA makes it clear that you don’t even need effective drugs. TB was on the run in Europe before we had streptomycin, as more and more people ate adequately nutritious food and lived in appropriately sized, ventilated buildings, and as work conditions improved. Even without drugs, if we could improve housing and nutrition, we’d gain a lot of ground on TB. But, as with so many of the world’s problems, we choose not to.
Green illustrates his points with the story of Henry, a TB patient in Sierra Leone; at times this felt a bit like inspiration porn, but he does make an excellent point in drawing the comparisons between Henry — an artistic young man who happens, of course, to be black — and the Romantic poets who were feted for being pale and interesting, and the whole tradition that thought TB patients were particularly bright souls full of special creativity. None of that is applied in how people approach Henry, naturally, and that shift occurred as TB became a disease of the poor (instead of all society).
One thing Green covered that I hadn’t known, from this side of the microscope, is that one of the problems with adherence to the courses of drugs that cure TB is hunger. Obviously I knew intellectually that TB patients are often suffering from undernutrition, but I hadn’t actually understood that the process of treatment restores the appetite, prompts roaring hunger, and an empty belly makes all of it feel so much worse.
It fits with one of the key takeaways I have from the tuberculosis course I’m doing right now, though: the major thing we can do to help people adhere to their TB treament is feed them, house them, and give them money. That will help them stick to their treatment and achieve a cure — and that will actually save so much money in treating other TB patients in future.
Finally, I will say that I have a couple of quibbles. First, as I mentioned above, I disagree that streptomycin was key in Europe’s recovery from tuberculosis. Secondly, I feel he conflated DOTS (“Directly Observed Therapy, Short-Course”) and DOT (“directly observed therapy”). As I understand it, it’s important not to confuse the two, because one is a strategy from the 1990s with very specific criteria, and the other is one component of treatment commonly used now which just involves patients being observed while taking their medications. My study materials might be wrong, of course, but I’d be surprised, since I study at the London School of Hygiene and Tropical Medicine, who can usually be trusted to know what’s what as far as infectious disease is concerned.
I’m probably being nitpicky there, though, because for a layperson’s purposes Green explains it — and the problems with it, regardless of whether you mean DOTS or just DOT — very well. Unsurprisingly, we’ve found that trusting TB patients and meeting their needs works better than treating them like children.
If you take one thing away from this book (or indeed from speaking with me), I hope it’s that TB is curable, and that if the will is there, we could do so much more to help people. I think this is something that everyone could use educating themselves about — and this is a very readable, and fairly short, way to do so.
