BookLife Review: Everything is Tuberculosis; The History and Persistence of Our Deadliest Infection (John Green, author) by Carol O’Day
Non-fiction, medical history, tuberculosis, global health crisis, medical history, romanticizing disease, health politics and inequities, racial inequities of disease
Everything is Tuberculosis: The History and Persistence of Our Deadliest Infection is a weighty and daunting title. But the non-fiction book by John Green (author of the blockbuster novel, The Fault in Our Stars) is an engaging, personal and enjoyable read. It is a great book for a book group where non-fiction titles can be hard to come by. All in at 189 pages, Everything is Tuberculosis reveals that the impact of this infectious disease, rare and curable in the United States, is all-too-often devastatingly intractable, ineffectively treated and often fatal with a recurring death toll in the millions globally.
By chance, or perhaps by destiny, John Greene travelled to Sierra Leone on a trip with his wife to learn about that country’s maternal and neonatal health care systems. While there, Green met a young man in hospital named Henry. Green first assumed Henry to be young and charismatic boy of about nine years of age, and only later learned that he was a radically malnourished young man of 17 who had suffered drug-resistent tuberculosis and treatment for several years. Green’s interactions with Henry caused Green to undertake extensive research on tuberculosis, it’s history and treatments, in an attempt to understand why a disease he believed was largely cured or controlled, was so virulent and deadly in Sierra Leone.
Green does a brief but fascinating deep dive into the medical history of tuberculosis, and Western medicine’s earliest and evolving (mis)understanding of the disease, and the steps and missteps in the treatment of the disease over time. In the historical period before tuberculosis was understood to be a bacteria-based, contagious infectious disease, it was often known as “consumption.” This term described the progress of the disease, as it consumed the victim’s lungs and appetite and resulted in malnourishment, inactivity, and weight loss. The disease was indiscriminate–it felled the rich and the poor. It is notable that for as long as the disease was seen as a disease to which the wealthy and elite succumbed it was not laden with the stigma of morality but was instead romanticized. Those suffering “consumption,” with flushed cheeks from fever, thin and frail bodies from loss of appetite, malnutrition or wasting of bone mass, were considered creative, romantic or angelic.
Later, as science advanced, treatments were identified and the disease was rendered treatable, the romantic notion died. Because treatment regimes were complicated and costly, wealthy and developed countries succeeded in containing the disease and curing its victims. However, the disease became one that continued to thrive in remote areas, impoverished areas, in countries without access to medications and in regions where access to treatment centers meant days of travel and loss of work.
Only when the disease was largely vanquished in largely white, first world countries, and remain deadly in poor black and Latino countries, did the disease take on a veil of moral failing and turpitude. Leaders and scientists shamed the global poor and cast the disease as one of poverty, cleanliness and failure of ability to comply with or adhere to an extended course of treatment. Victims of the disease in countries with few resources, like Sierra Leone, were patronized and infantalized. Patients were not trusted to take medications home to complete a course of treatment, but were compelled to travel (sometimes up to hours daily) to a treatment center, which erased their ability to work to earn money for food, further inhibiting their ability to recover from the wasting disease. Moreover, best practices for detecting the disease, and the targeted and appropriate course of drugs necessary to treat the particular strain were costly and were not shared with or affordable to third world countries. As a result, these communities relied on a less specific and less accurate sputum test for detection-a test that underreports positive results by almost 50%. The undiagnosed or those in whom drug-resistant strains are not identified continue to be either untreated or undertreated, causing an increase in drug-resistant tuberculosis.
These circumstances create a vicious cycle. As cases go undiagnosed by inadequate detection methods, infected patients return to homes and villages, often in crowded living conditions, where the contagious disease spreads and slowly grows in more and more victims. (One infected TB patient will expose and infect 10-15 others, and in turn each will do the same). Those who are sub-optimally screened as positive receive a cocktail of drugs that are not tailored to the particular strain they carry, not only rendering the treatment ineffective at halting their disease, but rendering it more resistant to treatment as the bacteria modifies itself into more and more drug resistant forms.
Green spends considerable resources in the book identifying current research in tuberculosis, and perhaps most significantly, research on systems to detect the disease, and to deliver tailored treatments that are accessible and can be sustained by persons without ready access to major treatment centers. He also documents critical preventative systems—mobile x-ray and other detection teams that can take health care to the places where the disease lives and thrives, administer tests, and prevent future disease by prophylactically treating immediate family members and coworkers of the infected patients.
Everything is Tuberculosis is what I consider a bubble-breaking book. It is an eye-opening and shocking in-depth and accessible look at a problem that at first glance may seem remote and of little consequence. But tuberculosis today is anything BUT inconsequential. It is a rampant and deadly disease that is only remote if one is privileged to live in a first-world nation with ready access to health care and the drugs essential to treating infectious disease. Elsewhere on the planet, the disease formerly referred to as “consumption” continues to consume lives and livelihoods, and decimate families and villages. These places are raising a hue and a cry, and begging for assistance and treatments that already exist elsewhere but do not exist for them. The systems of private ownership of life-saving drugs places these treatments out of reach for entire impoverished nations who cannot afford to buy and deliver life-saving best practices to treat a curable deadly disease.
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