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By guest contributor Lena Faust
For the past two years, COVID-19 has been the infectious disease that kills more people per year than any other. But another, much older, and much more insidious plague held this title prior to COVID-19: Tuberculosis (TB). TB has infected humans for thousands of years, but despite the fact that we have the knowledge and tools to prevent and cure it at our disposal today, it still killed 1.5 million people in 2020. How is it possible that a preventable, treatable and curable infection was the single leading infectious disease killer prior to COVID-19? How has our journey alongside TB for all these years shaped us and our history? And most importantly, which lessons have we learned, or failed to learn, that will determine whether we stand a chance at eliminating this ancient disease?
In her new book “Phantom Plague”, investigative journalist Vidya Krishnan gives a forceful and articulate account of humanity’s ongoing face-off with TB, from 19th century TB deaths influencing vampire lore, to fashion changes as women were encouraged to wear skirts above floor-length to prevent dragging in germs from the spit-covered Victorian-era sidewalks. In some ways, we have come a long way, from being oblivious to the very existence of microorganisms, to identifying the specific bacterium that causes TB, and finally to developing tools to diagnose and treat it. But in other ways, as Vidya points out, we have not progressed in the fight against this ancient disease, in large part due to challenges that are not technological or scientific, but social and political. Vidya demonstrates in Phantom Plague, that, in the same way that we may hold a microscope to the pathogen to examine its nature, TB in turn has placed under the microscope our society, laying bare its flaws.
“We have, one bad decision at a time, socially constructed a phantom plague,” writes Vidya, referring to the proclivity of those in power to create and impose on others the social conditions in which TB thrives, and their continued failure or outright refusal to ameliorate them. As a striking example of this, Vidya takes us on a captivating yet infuriating journey to Mumbai, a city whose staggering inequity brings readers from the tops of luxury high-rises to the sprawling, overcrowded slums below, in which TB is rampant.
Oppression, deprivation and TB are well-known companions. The factors that drive TB transmission in the unsafe conditions of Mumbai’s public housing compounds are similar to those fueling TB transmission in First Nations and Inuit communities in Canada, where inadequate housing and food insecurity are disproportionately prevalent, and where action on improving the social determinants of health has been stagnant. What makes these parallels in TB epidemics all the more frustrating is that they indicate that we know the solutions. From a technical perspective, we know how to prevent and cure TB, and we know that a great place to start is with addressing social inequities.
So, if the solutions exist but are not being implemented, it becomes clear that the problem is not a lack of scientific or public health know-how, but a lack of what global health ethicist Dr. Solomon Benatar calls moral imagination, the “capacity to see ourselves as bound to all other human beings, and the sensitivity to imagine what it might be like to be a person living a very deprived and threatened life.” In other words, the lack of progress on eliminating diseases that predominantly affect the poor is a consequence of the lack of empathy among the powerful in the face of the suffering of others.
Nowhere is this lack of empathy more evident than in the maddening maze of a healthcare system that TB patients in India must navigate on their journey with TB. Getting a TB diagnosis often takes months, and bounces patients from one provider to another as they get sicker. Even if and when patients are finally diagnosed, treatment access remains difficult, especially for people with drug-resistant (DR) forms of TB, who require specific drugs that remain on patent in India, making them inaccessible at lower cost and in the quantities needed. Through the powerful stories of several people affected by TB, Vidya highlights that the precarious journey continues once patients are on TB treatment, which she aptly describes as a “thousand-pill odyssey.” This odyssey is made worse by the fact that antiquated DR-TB drugs with terrible side effects (including, for example, hearing loss) continue to be used, instead of working to ensure that existing, newer and safer drugs are more widely available.
So in repeated episodes of neglect, policymakers first create vulnerability to TB in part through actions such as commissioning ill-conceived, overcrowded public housing, and then again fail patients when they do fall sick by sending them through the diagnostic obstacle course of a poorly-regulated health system. Those who manage to get diagnosed, are dealt a further blow by governments that ration life-saving drugs against the hardest-to-treat forms of TB, and continue to use old drugs with severe side effects despite the existence of better alternatives. In this context of decision-making guided by the self-interest of those in power rather than by scientific evidence, it is difficult to see hope for TB elimination in the near future. In a world that repeatedly puts profit before people, diseases like TB, unfortunately, will persist.
As is necessary for a disease so strongly linked to the social determinants of health, in Phantom Plague, Vidya peels back the layers of India’s TB epidemic, to reveal its true causes. She points out not only that the deplorable state of public housing in India’s megacities fuels TB transmission, but that its root causes go deeper, and are found in the caste and class-based oppression that led to the construction of these dwellings in the first place. Perceptively, Vidya notes that while pathogens mutate and adapt, “humans have remained prisoners to their biases – race, caste and class.” If this does not change, TB is here to stay. One can only hope that COVID-19 has taught us that although the mechanisms of structural violence have concentrated the burden of infectious disease along the faultlines of caste and class, they can affect us all.
About the author:
Lena Faust is a PhD candidate in epidemiology at the McGill International TB Centre, whose research focuses on the impact of the COVID-19 pandemic on TB. Twitter: @LenaFaust1