In 2020, even as Covid-19 made headlines for the lives it claimed, more than 1,300 Indians died everyday due to tuberculosis. Tuberculosis is the hidden pandemic we have been living with for centuries, one that affects Indians of all strata of society. The National TB prevalence survey results show that diagnosis dropped sharply in the last two years due to disruption of regular health services with the pandemic, and therefore, as more patients remain undiagnosed and untreated, this number of daily deaths due to tuberculosis will rise. What is worrying is that despite this data, India’s spending on medication for tuberculosis, both drug sensitive and drug resistant forms, remains the lowest among the 10 countries with the highest burden of the disease.
It's all of this that makes health journalist Vidya Krishnan’s book Phantom Plague: How Tuberculosis Shaped History a timely read. Her work is the culmination of nearly a decade of inquiry into an ancient disease that grows more resistant with each passing decade. It is a dive into the muddied waters of epidemics that have plagued the world for centuries and the slow evolution of science’s attempts to catch up with pathogens that always find ways to outsmart public health experts. With this book, Krishnan reveals as much about what ails the official policy responses to the threat that tuberculosis poses as she does about the individual and collective human follies that have led us to the current ‘antibiotic apocalypse’.
She begins with an exploration of the evolution of our understanding of infectious diseases, beginning with the 1800s in America and Europe. Through records of deaths due to mysterious illnesses during past epidemics and the human stories behind the names of scientific giants like Semmelweiss, Pasteur, Lister and Koch, she shows how medical science’s understanding of the origins of infectious disease evolved from miasma to microbes. The devastating cholera epidemic of the early 1800s and the mass burials described evoke the recent tragedies of families who were unable to give their loved ones a proper farewell at the peak of the first wave of Covid-19. Over and over, we are reminded of the racism and xenophobia implicit in disease prevention—it is always the migrants who are viewed with suspicion and carriers of disease. She narrates superstitions and mythical remedies, discusses exhumed bodies of the New England Vampire Panic as well as Bram Stoker’s Dracula to show the interconnectedness of scientific discovery, literature, and everyday life. The tragic story of Ignaz Semmelweis’ meticulous research and repeated attempts at alerting an all-male medical scientific community to the simple act of hand hygiene as a measure to save the lives of women in childbirth, the refusal of his contemporaries to comply with this suggestion and his death alone in a mental health asylum due to sepsis, brings to mind the resistance of many in today’s world to the simple act of wearing masks to protect others from Covid-19. Each of these discoveries helped shape our knowledge of tuberculosis today. These stories also help us understand that the progress of science is slow in the face of resistance to change in medical practices.
Tuberculosis had infected nearly 70-80% of the population in European cities in the 18th and 19th centuries by some estimates and carried a high mortality. It occupied a large space in the discourse of the time. Krishnan gives us tidbits of trivia of how public health attempts to contain the spread of tuberculosis shaped fashion, from the hemlines of women’s dresses in the early 1900s to men’s facial hair. While women’s demands to shorten their skirts to a length better suited for sporting activity was deemed unreasonable in that era, the theory of the trailing ‘septic skirt’ picking up germs infecting unsuspecting children was enough to allow hemlines to rise. The author takes us further into the fascination of writers of the time with tuberculosis as she delves into Sir Arthur Conan Doyle’s attempts to meet Robert Koch, his detective skills in uncovering the incompleteness of Koch’s theories and Sherlock Holmes’ role in promoting a scientific bent of mind in a different era. From vampire horror to detective thriller, from classics to romantic operas, we are introduced to famous artists, writers, philosophers who had one thing in common— tuberculosis, a disease with no treatment at the time.
The writer then brings us to India where most of the action unfolds. Krishnan’s writing is at its most powerful as she chronicles the stories of a few patients in modern-day Mumbai. Through the stories of Piya’s father’s struggles to get her a new drug and the side effects she must endure, and Anita’s daily struggle to climb seven flights of stairs to get her medication, we see a health system that is woefully inadequate. The patients’ difficulties are compounded by the indifference of government officials and national programmes to the trauma of patients.
The connection between caste, class, race, the state’s failure in urban design and denial of unpleasant numbers revealed by surveys is illustrated brilliantly in her expose on the studies of clusters of drug resistant tuberculosis patients in slum redevelopment housing projects in Mumbai. Hard-hitting numbers from repeated studies across India, China, South Africa, and Kenya show that despite decades of sounding the alarm, medical education and public health systems have failed to produce doctors who can accurately diagnose and treat patients with tuberculosis. It is chilling to note that even today less than 40% of patients in India may be diagnosed and treated appropriately.
The section on patents, intellectual property, international treaties to protect profits over patients is lengthy though it helps to understand how tuberculosis continues to claim more victims in the global south. She calls out the role of international aid organisations that continue to propagate band-aid measures like donations, over long-term reform in renegotiating terms of intellectual property laws to make drugs affordable and accessible to the large suffering populations in the global south. This is where the concepts of ‘clinical deserts’ and ‘medical apartheid’ become apparent. Krishnan shows examples of best practices -the advocacy work of organisations like Medecins Sans Frontiers, countries like South Africa who enacted national policies to make essential anti-TB drugs accessible for free.
What is apparent in these accounts is neglect of public health from colonial times and repeated failings on the part of successive governments to strengthen the public health infrastructure. The ailing overburdened governments systems where apathy and burnout reduce patients to statistics are no match for a wily, shape-shifting pathogen which thrives on repeated policy missteps. There is no place for a discussion on health as a human right or even science in a war on numbers that is led by technocrats and heavily influenced by Big Pharma. Trade practices and business interests supersede other considerations while fighting a disease that cuts across all demographics, claiming patients from the slums of Mumbai to Bollywood.
I read this book over time to give myself the space to reflect on the multiple threads that she brings into the narrative, threads that sometimes loop and tangle in unexpected ways. This book is not an easy read, but an essential one. I would have appreciated a more global perspective that included, say South Africa or Eastern European countries facing the challenge of drug resistant tuberculosis. The central section of powerful stories from India read like they are intended for a western audience. Factoids about superstition, science denialism, behavioural sciences, colonialism, capitalism, the decline of ethics in trade and policy, inequity… a few too many themes jostle for space in 259 pages.
As a doctor, my takeaway from the book was more about how history shaped tuberculosis than how tuberculosis shaped history. This book is a timely warning to make sure we hear what patient communities and the advancing science of tuberculosis is telling us if we are to stand a chance against this captain of the men of death.
Dr. Rajani Surender Bhat is a pulmonologist and palliative medicine physician with an interest in public health. She is a co-convenor of the Community Science Alliance, a non-profit initiative.