TB, an Untameable Epidemic: Why We Need to Listen to the Patient

(This piece is an extract from the Editors Note of the book Tuberculosis—India’s Ticking Time Bomb: The Survivors’ Manifesto. The author is the Editor of the volume.)

Termed a ticking time bomb, tuberculosis remains one of India’s most significant health challenges, killing over a thousand Indians every day. A curable disease, a stigmatized one, an engine of poverty and debt—TB has numerous manifestations, each of which create difficult circumstances for the individuals, families and communities affected by it.

Despite extensive efforts to control it, TB in India remains elusive, insufficiently understood and ever growing—an untameable epidemic. Although at the highest levels of decision-making, India has committed to eliminating TB, yet we remain unable to conceive its end in the foreseeable future.

Too caught up to read? Listen to the story here:

These contradictions stem from our limited understanding of what TB is—an ancient disease that can spread through air and consumes the patient if not diagnosed and treated early.

TB, however, is a lot more than just that in contemporary India. It is not a unidimensional disease but many ailments combined, well beyond its physiological manifestation. Apart from the bacteria, and the physical damage it inflicts, there are deep economic, social and cultural dimensions of TB that remain largely ignored and unaddressed.

Why We Need to Change Track

Unfortunately, most of the discourse around TB in India emanating from government, the private sector, international partners and the like remains mired in a single approach—test, treat, adhere to the treatment. In truth, those that treat TB and those tasked to manage this epidemic, remain unengaged in what it means to be affected, what the process of fighting TB means to those affected, their families and their community.

The most critical character in the TB story is not the doctor, or the health system, but the patient. While TB affects millions of Indians, very few of them have a say in how they are diagnosed, how they are treated, what information they get, what support they need to defeat this disease, and how to get it. In essence, the character at the epicentre of this journey has no voice.

Don’t Forget the Patient

While working with and listening to the TB affected, or recording their stories, I have found these individuals are filled with questions—and also with answers. However, they remain disengaged from the health system tasked to address their needs. This is due to multiple reasons, which include fundamental issues such as class, geographical location, ability to access health care, gender and, most critically, stigma. As a result, the narrative of the health system is filled with gaps and inconsistencies.

In this book, they recall their stories with support from editors and writers to reconstruct a narrative of their journey.

This is critical because patients rarely take centre-stage in telling the TB story from their own perspective. Even when patients do speak, their stories are divided into sound bytes to fit into news articles and policy papers for analysis or momentary shock.

In many ways, patients are the visible but voiceless stakeholders of TB — seen but rarely heard. This volume seeks to break that mould.

A Patient Manifesto

This volume was conceptualized as a patient manifesto and developed to articulate and bring the patient perspective on TB in India to the mainstream. While a significant amount of literature exists on diagnosing and treating TB, little or no documentation exists of how patients experience all the disease stages and what they need to fight TB successfully.

From the time a patient first coughs or finds other signs of TB, to when they take their last dose, patients are expected to follow rules and meet the expectations set by others. The system does not allow for challenge or redressal.

The patients’ dependence on the system is absolute and their agency limited. Their needs, perspective and demands (if any) remain unarticulated.

Through this volume, we are hope to highlight some of these challenges and perspectives and change mindsets.

At the beginning of each chapter, our focus was to narrate a story and contextualize the analysis and suggestions that followed. Addressing the specific aspect of the disease discussed in the chapter and describing the suffering was critical, as we wanted the narrator to be visible and forthright about their experience and about how the particular issue affected them. The narrator is not just the subject of the narration but also the voice that contextualizes and analyzes the experience, presenting an alternative point of view.

The focus on accountability is both necessary and urgent.

India’s poorest and most vulnerable have few options—if they go to the public health system they are faced with endless waiting, mistreatment, poor diagnostics and frequent drug shortages.

In the private sector, there is poor quality of care and the cost of diagnosing and treating TB is prohibitive, pushing families into debt and poverty. In the end, many give up and disappear, becoming one of the missing million TB patients in India.

If India wants to address its TB epidemic effectively, it must begin by hearing the voices of survivors and directly affected communities. Their recommendations are vital to prevent TB from continuing to devastate the foundations of this aspirational superpower.

(Chapal Mehra is a public health specialist and advocate on issues of health, development human rights and accountability. He works with patient advocates to bring them greater visibility and engage them on issues of policy, access and patient participation in program and policy formation. He is the Editor of this volume.)