Sitting in his one-room house in Dharavi, on a rainy Mumbai morning, Owais, India’s first patient to be put on Bedaquiline, one of the newest drugs in the arms race against DR TB, once asked me, ‘Who would have been responsible if I didn’t receive this drug?’ In this one question, he sought the answer that most of the TB-affected in India want to know: Do their lives matter? And if so, who is accountable?
When one examines the number of unnecessary TB deaths, the answer may seem apparent. Its time to take cognisance of reality and take that this question further. Beyond the rhetoric, we need to articulate a set of demands and create a process of seeking accountability on TB in India.
The focus on accountability is both necessary and urgent. Even today, 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.
The focus on accountability is both necessary and urgent.
Claims of ending TB, well-intentioned and sincere, remain empty while millions grapple with this disease. These claims are also at odds with India’s full-blown epidemic of TB and drug-resistant (DR) TB—a crisis that has been decades in the making, due to policies of benign neglect on the part of successive administrations. Moreoever, they clarify intention but do not ensure accountability.
India has an ambitious strategic five-year plan to control TB which plans to find, treat, prevent and build for TB control on a massive scale. However, the plan ignores the fact that most Indians affected by TB do not seek care under the government health programmee. Even the poorest prefer to pay and go to the private sector because they perceive it as efficient and accessible.
They land up in the public sector only later, often penniless and much sicker. That most TB-affected people need efficient care with dignity and respect has escaped India’s health programme planners.
A decade of neglect has now resulted in an epidemic of multi-drug-resistant (MDR) TB.
Combine these concerns with a more dangerous and harder-to-treat drug-resistant form of TB, and the crisis becomes severe—and alarming. A decade of neglect has now resulted in an epidemic of multi-drug-resistant (MDR) TB. India has close to 100,000 cases of MDR TB—many consider this figure to be an underestimation. MDR TB is harder— and also prohibitively expensive—to diagnose and treat.
This lack of understanding of TB realities is not deliberate on an individual level. It is a result of following a dominant medical paradigm to address and manage TB for many years. There is seldom discussion on understanding the perspectives of those affected—the patients.
Why is TB misunderstood? Perhaps because several of its dimensions are beyond the capacity of the health establishment. A lack of preventive strategies, the prevalence of poor nutrition, and increasingly rapid urbanisation, combined with limited public awareness all feed India’s epidemic.
These are domains traditionally outside of disease control programmes, though they have an undeniable impact on disease control. In truth, the health establishment is often powerless, despite its sincerest intentions to control this epidemic.
If we are to address India’s TB problem comprehensively, we must turn to the popular or mainstream understanding of TB. We must also listen to survivor voices on what they need to address TB. The representation of TB, or consumption as it was once termed, has been romanticized in the West and often depicted poetically. In India, however, this condition has remained associated with poverty, poor hygiene and poor nutrition.
Despite being a current and modern crisis, TB has remained a whispered disease, its survivors forced to live in silence—denying them the ability to even talk about their relentless and unforgiving condition while it consumed them.
Even today, a TB patient is treated with fear, trepidation and concern, whether by his/her community, or even in healthcare settings. Discrimination is rampant and treatment is often inhuman. While the disease has changed and evolved, our understanding of it has remained mired in incorrect, often misguided notions. A strange silence persists around TB, our poor understanding of it and our inability as a nation to recognize symptoms and seek care without fear and discrimination. This is at the heart of India’s TB crisis.
Perhaps what is most ironic then, is that while public awareness campaigns push those affected by TB to seek care, the stigma around TB pushes them into silence, not merely socially, but in terms of vocally interacting with healthcare professionals and the system. TB treatment and diagnosis can take time.
Yet, if a disease requires a long duration of adherence to drugs and management of side effects, then how can the role of the affected individual or community be so diminished? Why do the TB affected have so little say in how the disease is managed, how healthcare systems are structured, and what research priorities are?
While patients can expect very little from the system, the system expects patients to comply entirely—take medicine without lapses, manage side-effects, address mental health issues—and entirely on their own. Apart from this, it does little to address their economic, social and individual needs or aspirations. The role of patients is to follow instructions.
The journey of the TB affected is deeply instructive when examined closely. From what makes them vulnerable to why they often abandon treatment, the logic in their narratives is unquestionable. Their ability to negotiate the disease is often limited and their support systems, both within the healthcare system and within their homes, are fragile. Their stories are compelling insights into what it takes to navigate the experience of fighting TB. Hence, the TB survivors themselves must become our primary storytellers.
The recently-published book ‘TB-The Ticking Time Bomb: The Patient Manifesto’ brings together some of the demands of TB survivors and puts them in the public domain and infant of decision makers to seek support. These cover areas from -diagnosis and treatment too counselling, communication and stigma- all pertinent issues.
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. #KhabarLive