Not long ago, as India concluded its G-20 events, among its statements was an oft-repeated commitment to end tuberculosis in India by 2025. This coincided with reports of anti-TB drugs being out of stock in India. This dichotomy underlines the many truths about TB in India.
This week, the global TB community will come together again for the Union Conference in Paris to discuss solutions to end the disease. The usual suspects will attend, more of the same issues will be discussed and some token gestures will be made by the foreign agencies to include global advocates and voices.
In truth, as such meetings unfold, rarely is any transformative work done on TB diagnosis, treatment or including communities in the discussions. Instead, such global conferences have become forums for neocolonial ambitions to play out and political posturing by international institutions and their domestic partner governments. In short, a meeting to maintain the power asymmetry in TB.
While talking innovation and rights, these global institutions and advocates quickly fall in line with domestic governments. A case in point being India, where even though reports of drug stockouts pile up, the government’s efforts on TB continue to be applauded internationally.
TB has enormous political currency as it affects numerous poor countries. In India, the poorest and most vulnerable are affected by TB. So it is appropriate for foreign-funded institutions, universities and academics and also domestic leaders to be seen as engaged in the moral battle to fight TB. It has an emotive value for millions of those affected and earns their support, creating an illusion of cooperation. It also resonates globally as the killer disease that devastates the poor everywhere.
It is the ideal story to tell the media, to make survivors repeat their stories and make it seem like change is imminent. After all, how can one not like leaders and organisations that promise to end TB in India and elsewhere?
Despite the political attention, however, the progress has been small. This is not an idea, systems or administrative problem. Instead, it is a power issue where TB is being used as a tool of neo-colonisation with truth being the biggest casualty. Here, programmes are being set impossible targets, with international agencies and governments partnering to make it seem like action is being taken. Political considerations, not expertise, drive disease programmes.
Those affected still do not seem to have much-needed drugs and reliable tests, yet slogans talk of eliminating the disease. It’s no surprise that curable TB kills an Indian every minute. Globally, communities are rallied to support and validate these efforts but they have little or no say in their design or implementation efforts.
For every issue that communities have raised over the past decade, domestic governments, with support from international partners, have converted it into clever campaigns about their work, parading community participation. It is evident that the commitment to eliminate TB is unrealistic but it is a lie reiterated in meetings and policy documents. Yet, few know exactly how to do so.
Instead, at its core, the global and national strategy is focused on creating a positive media narrative that ignores and distracts from the realities of TB-affected communities. It is a way to implement ideas developed elsewhere, which can often be counterproductive. For instance in India, concrete action would mean revisiting how TB is diagnosed and treated and communities dealt with. This will require significant investment, reskilling and the reimaging of the entire system.
What, then, is the reality of TB? India’s TB efforts, for instance, are underfunded, understaffed and also not trusted by the 50% of the country’s TB affected who seek care in the private sector.
The first challenge often is TB diagnosis. Most Indians, even today, miss TB symptoms. India’s healthcare providers routinely fail to order a TB test. TB is so stigmatised that many do not want to be tested fearing loss of job, family and community. In truth, even today, accurate and affordable diagnostics are highly delayed for most Indians. What no global partner ever asks is how India will eliminate TB if it does not diagnose it in time.
TB treatment remains equally challenging. As the current stockouts illustrate, public sector treatment can be unreliable and provides poor quality of care. The private sector, by comparison, gives the illusion of prompt diagnosis and treatment even though it is expensive and often inaccurate. Strategies that include neither communities nor the private sector abound, with foreign academics and institutions forcing definitions of what quality of care looks like. This represents cookie-cutter formulas that are presented to national governments and often adapted. Few ask the difficult questions – or even bother to ask the end user.
There have never been better options for treating TB. Numerous new shorter, more effective regimens promise reduced side effects and decreased suffering for TB patients. This, however, has been turned into a war field by pharmaceutical companies with support from international agencies to get governments to adopt them. They are needed because TB treatment is exhausting and with numerous side effects. But how are they to be made affordable?
From mental health and stigma to neuropathy and long-term disability, the TB-affected struggle with side effects that most would barely tolerate. While talking of elimination, governments rarely announce plans to implement these new regimens. International agencies remain strategically silent on this as well. If India’s commitment is real, there should be no struggle with stockouts or long toxic treatment.
Another case in point is the relationship between undernutrition and TB. How do hungry people eat toxic medicines? In India, the government’s Nikshay Poshan Yojana gives a Rs 500 to those affected by TB. Despite requests, this amount has never been raised. What is troubling is that the state is now outsourcing these nutritional needs through the TB Mitra Scheme, describing it as a people’s movement. This leaves the TB-affected helpless and reliant on the goodwill of fellow citizens.
What the government should be doing is providing food security to India’s vast population as a preventive measure. Yet, international agencies cheer on official programmes as progress when it is an abdication and dilution of the state’s ethical and legal responsibility.
While the political value of TB is clear, its route to elimination is not. Conversations need to be led by the global south but instead, these countries are merely offered a seat at the table. Even today in India, TB survivors are used as underpaid labour, with support from international agencies, to fight and end TB. The irony of this is not lost on them.
A final case is the growing use of community voices that are co-opted to make these efforts look good. Now and then, like at the TB conference, survivors are paraded to share their stories. When this is done, the governments and international agencies pat each other on the back for an inclusive media campaign well done.
While thousands die every day from this curable disease, governments and international agencies seem busy using it as a far-reaching political tool to maintain the status quo.
Chapal Mehra is a public health specialist and the Convenor of Survivors Against TB (SATB), a collective of survivors, advocates and experts working on TB and related comorbidities.