Take lessons from survivors in India’s fight against TB
They can play a critical role in addressing stigma, help design diagnostic, treatment protocols
The first step is normalising and destigmatising TB testing. Also by Deepti Chavan and Diptendu Bhattacharya
On March 24, World TB Day, the Prime Minister of India will renew India’s pledge to end TB. The disease has plagued India for centuries. Though curable, it still claims a staggering 4,00,000 Indian lives annually.
TB is India’s severest health crisis, yet it is believed by most Indians that TB is unlikely to happen to them. This cavalier attitude is the result of a critical failure in addressing information gaps that exist around TB. As yet another call for ending TB is raised, most Indians still do not know the symptoms of TB, most doctors rarely order enough TB tests, and a staggering one million cases remain unreported in India.
How can we change this? TB survivors and advocates can offer insights and suggestions. The first step is normalising and destigmatising TB testing. This would mean large-scale, intelligently crafted and socially relevant campaigns targeted not just at the population but also at India’s healthcare providers, who routinely fail to order a TB test. Here, TB survivors can play a critical role in helping design such communication and community support strategies that actually work.
Poor provider awareness and mixing up of symptoms mean that TB is often misdiagnosed, particularly in the private sector. India claims to have made testing both for drug-sensitive and drug-resistant TB widely available. In truth, accurate, reliable and affordable diagnostics remain inaccessible to most. India needs to urgently invest in diagnostics, focusing on the scale-up of new diagnostic tests and offering universal drug-susceptibility testing (DST) to all TB patients. Also, we need to ensure every Indian seeking care can easily access accurate TB tests for free.
When it comes to treatment, there has never been a better time for TB. Globally, numerous new shorter and more effective regimens promise reduced side effects and decreased suffering. The universal implementation of the shortest and best available TB regimens for TB prevention, drug-sensitive TB and drug-resistant TB is needed. India can play a leadership role and roll out large-scale shorter regimens for adult and paediatric populations immediately. If cost is an obstacle, we need to consider options such as compulsory licencing.
In India, the issue of nutrition is critical. Expecting poor patients to continue treatment without providing economic support is counterproductive. The Nikshay Poshan Yojana, a well-intentioned scheme, still faces gaps in implementation, and its amount for support — a mere Rs 500 — remains inadequate. As Covid-19 devastated the economy, the need for economic support for the TB-affected, who find it difficult to work, is urgent. The amount for NPY needs to be increased to at least Rs 2,500.
Evidence shows that the provision of treatment is not enough. We need to provide both patient and family counselling, information and support to inform and engage the patients and their caregivers but also to help mitigate mental health impact and reduce stigma.
A deeply neglected issue is that of stigma and mental health. TB is highly stigmatised within communities, families, and patients routinely face discrimination within the health system. India needs to launch a national campaign for stigma reduction and provide counselling and mental health support to TB-affected individuals. Stigma takes its toll on all TB-affected individuals but particularly on women, trans individuals and the LGBTQIA++ community. Some government gender policies perpetuate stigma and need to be revised to ensure that vulnerable sections such as the LGBTQIA++ community are not just represented but their needs are addressed.
The largest number of TB cases are diagnosed and treated in India’s vast, unmonitored private sector. Here the quality of care is unreliable, and diagnosis and treatment are expensive and often inaccurate. India cannot solve its TB crisis until it actively engages with the private sector, monitors its quality of care and ensures patient support for all patients. We need an innovative and well-thought-out people-centred private sector engagement strategy. If we want to address TB on a war footing, we need to consider successful examples of public-private partnerships and incorporate them into our national plans. This will have a large-scale impact on reducing India’s TB burden and also costs and suffering for those affected.
Finally, nothing is possible without research and evidence. India needs to rapidly invest in TB-related research.
Ending TB needs innovation, rethinking current strategies and putting people at the centre of our efforts. Our fight against TB needs services that are high-quality, people-centred and stigma-free. No TB-affected individual should have to wait for diagnosis, treatment, economic support or suffer stigma. Nor should their families take loans for treatment.
The time to act is now otherwise it may be too late. Because every life lost to TB is an Indian we could have saved.
Chavan is patient advocate, STB Fellow and an MDR TB Survivor; Mehra is a public health specialist and convenor SATB; Bhattacharya is an educator, patient advocate and MDR TB survivor
Share
