Listen to the survivor
Sensitivity to those with the disease should guide India’s TB control programme
Sensitivity to those with the disease should guide India’s TB control programme. (Express photo by Lalit Kumar/Files)
At the recent End TB India Summit in New Delhi, India’s prime minister declared its intention of eliminating the disease by 2025 —five years ahead of the global target. While the world applauded, those on the frontlines of India’s tuberculosis (TB) epidemic wondered if this indeed was possible anytime soon.
Well-intentioned and sincere, India’s fight against TB has benefited significantly from commitment at the highest levels of government. Yet, considering TB has been termed India’s ticking time bomb, this public health crisis needs a more participatory and thoughtful approach. We can start by recognising our current approaches are failing. We also need to imagine an expanded and inclusive strategy for TB, backed by sufficient funding and rigorous implementation.
In order to construct such a strategy, we must first understand why our current approaches to addressing TB remain disempowering and paternalistic, ignoring its multiple dimensions.
Killing over a 1,000 Indians every day, TB is omnipresent in India. Yet, this curable disease remains highly stigmatised, and the TB-affected are forced into shameful silence due to mistaken perceptions about this disease. Accurate diagnosis and treatment is still challenging. Even today, the most vulnerable patients — and entire communities — remain uninformed and disengaged. TB is also an engine of poverty, pushing families and communities into debt.
Here are other troubling facts. Most TB-affected Indians seek expensive, often inappropriate, care in the private sector and not the government health programme. With long waiting queues, the government programme is usually their last choice. So, India cannot make a dent on its TB crisis until the private sector is an equal partner in the fight. TB affects everyone, but partnerships to tackle it with communities, the private sector and other stakeholders remain weak.
Perhaps the most troubling aspect of TB is the lack of agency of the most important character in the TB narrative —the patient. While TB affects millions, 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. 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. Consider this: A patient’s dependence on the system is complete, though their agency to question it is very limited. Their needs, perspective and demands (if any) remain unarticulated.
While we are quick to blame the patient, we never attempt to understand why they abandon treatment, hide their disease and often give up. TB treatment is long and has toxic side affects. It limits your ability to earn or work. Thus, the TB patients’ ability to negotiate the disease is often limited and their support systems, both within the healthcare system and their homes, are fragile.
So where can India start if it wants to address TB comprehensively? It must begin by listening to TB survivors and affected communities. They are wise in ways that doctors are not and can tell us exactly what they need to fight TB. What would a patient manifesto read like? Something like this: Irrespective of where they seek care, all Indians should have access to free and accurate diagnosis and appropriate treatment. More importantly, India should work to provide efficient care with dignity and respect —an idea the current health system seems unable to grasp.
Let’s also simultaneously address the other dimensions of TB. Poor nutrition, and increasingly rapid urbanisation, combined with limited public awareness all feed India’s epidemic. Until we inform and empower communities and make our cities more liveable, and healthcare more accessible and affordable, TB will continue to haunt us.
With a missing million TB cases, and rising multi drug resistance (MDR) , all TB patients will an need an upfront drug susceptibility test (DST), to rapidly identify MDR TB and more severe forms of DR TB. This form of TB is harder to diagnose and treat. Treatment should move away from standardised regimens to individualised regimens, choosing only drugs to which we know the bacteria is sensitive to. We also need to urgently make available, under controlled conditions, new drugs that have the potential for curing the most resistant TB strains. Most critically, the government must give up its ambivalence and actively engage the private sector. That is where India’s real TB battle will be fought.
In the end, our inability to act in time, will not just devastate India today but its future. It’s time to move beyond the rhetoric and seek participation from those that can help. India’s TB affected are speaking up and telling us what to do. Are we listening?
The writer is a public health specialist who works with TB survivors
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