Termed as the severest crisis in a century, the COVID-19 pandemic dislodged the entire health system in India, sidelining other public health issues, and tuberculosis was no exception. Until COVID-19 arrived, TB, an ancient though curable disease, was India’s biggest killer.
Recent headlines talk about India’s determination to eliminate TB by 2025. This would be welcome news, but we should ask if the current efforts are in the right direction. Despite an extensive national programme and a vast private sector, India is the global epicentre for TB, with an estimated 2.8 million TB cases, and with TB killing more than 4,00,000 Indians every year. Additionally, a growing burden of drug resistant TB (DR-TB) now threatens the progress made in basic TB management. Truth be told, India’s TB crisis is a global problem.
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TB may have got renewed attention but on the ground, multiple unaddressed challenges remain.
Let's start by addressing the elephant in the room. Elimination of TB by 2025 is impossible. Making these claims doesn’t just mislead us, it diminishes the suffering and struggles of millions and many who die from TB every year. We need to be realistic and accurate in our claims and strategic in our intent. Unrealistic goals make for good slogans, but do nothing to address challenges such as lack of access to diagnosis, treatment and TB-related poverty and stigma. Behind these slogans are the untold stories of TB patients that need to be heard in the corridors of power.
Diagnosis and treatment
Across rural India, one finds crowded hospitals at far stretches with little or no access to reliable TB diagnosis. Most TB-affected persons often travel anywhere between 20 km and 40 km and wait for hours or days to get a reliable diagnosis. While the government sector is stretched, lacking infrastructure, the private sector has a record of overuse of diagnostics and treatment. Here, any number of tests or medicines, often inaccurate, can be prescribed without logic, exploiting those affected.
As the COVID-19 pandemic started, many TB-affected individuals did not visit labs for diagnosis. TB notifications for new cases fell. By some estimates there are close to a million missing patients in India. Post COVID-19, this number will likely rise and become a challenge in terms of transmission, diagnosis and initiation of early treatment.
According to the National Family Health Survey (NFHS), the private sector provides care for over 60 % of all Indians at some point or another.
In the case of TB, this number remains high despite free government services, due to ease of access and perceived higher quality of care. Clearly, fighting TB in India urgently needs the private sector as a partner. While a few years ago, the government was aggressively engaging the private sector, these efforts have now reduced. The government needs to employ new and innovative strategies to engage and work with the private sector. This should be done by seeing the private sector as a partner so that it can be mobilised to address TB in an effective way. The missing links here are intent, determination and trust.
The economics of TB
With COVID-19-related job losses and a slowing economy, TB-affected individuals and families are at risk of insufficient nutrition. A few years ago, the government announced the Nikshay Poshan Yojana (NPY), a nutritional support scheme giving a monthly sum of just Rs. 500 to TB-affected individuals. The scheme falls short in addressing the needs of the TB-affected communities. With current food prices, this amount barely meets the food needs of even one individual anywhere in India.
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The recently announced patient adoption scheme is one in which the government is asking individuals and corporates to adopt TB-affected individuals. This poses many questions. Is it not the role of the government to provide food security to those affected? Why has this been transferred to other stakeholders? Eliminating TB may need people’s support, but people’s nutritional needs should surely remain the government’s responsibility?
Stigma and mental health
With TB, a critical issue is long-standing stigma. TB-affected individuals often face isolation and discrimination within the health system, families and communities. Yet, government efforts in addressing stigma remain uneven with periodic anti-stigma campaigns. Addressing stigma has to be done structurally within the health system, in a consistent and ongoing way.
Similarly, TB and mental health are deeply related co-epidemics. A large percentage of TB-affected persons have mental health problems, right from diagnosis till post-cure. These challenges impact patients' ability to continue treatment. For instance, depressed patients are three times more likely to give up on treatment due to side-effects. India urgently needs to integrate mental health services as an essential part of TB services.
If India wishes to eliminate TB, it’s time to go beyond slogans. Even now, the quality of TB service in India remains poor, undignified and often unaffordable. We need to increase investment in TB infrastructure for diagnosis and treatment in the public sector. We must expand capacity for reliable testing for detection of both drug-sensitive and drug-resistant TB.
We also need to create a long-term strategy to engage the private sector. If done collaboratively, we could ensure that every affected individual is provided suitable care from diagnosis to cure and administered all oral regimens. We should be providing access to new adherence technologies and drugs in both the public and private sectors.
These efforts will remain incomplete until we increase NPY support as also social and mental health support as an essential part of TB care. A long-term stigma mitigation strategy in communities and for affected individuals and families is critical.
Before we talk of ending TB, let’s understand that TB does not act in isolation. Its impact is determined by social, economic, cultural, religious, caste and political factors. It is time to put individuals and their needs first in our fight against TB. Until we do, TB elimination efforts will remain much like the Emperor’s new clothes, admired by all but seen by no one.
(Chapal Mehra is a public health specialist and Director, The Raahat Project)
