Radheshyam Jadhav’s Lives on the Edge looks at why it is difficult to eradicate tuberculosis in India

Rakesh Kochhar

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INDIA accounts for over one-fourth of the global disease burden of tuberculosis (TB). Though it has become a notifiable disease and its treatment is free, yet over five lakh patients died of TB in 2020 in India. As such, the government’s ambitious drive to eliminate it by 2025 under the National Tuberculosis Elimination Programme seems to be way off the mark.

‘Lives on the Edge: Tuberculosis in Marginalised Populations’ is based on the author’s field visits to the hinterland as part of a fellowship by Survivors Against TB. The book demonstrates Radheshyam Jadhav’s deep insight into the social structure of rural India, the health infrastructure at the last post, and his understanding of the sensitivities of patients. With his vast experience of reporting on rural issues, he seems to strike a chord with TB patients and their families, besides the local village folk and health functionaries, to bring out the problems faced in combating TB at the grassroots level.

The book starts with three poignant stories that exemplify the harsh realities of our fight against TB. The first is about Simran’s infant daughter, diagnosed with latent tuberculosis infection. Simran is fighting for not only her daughter’s treatment, but also the apathy of her husband’s family. In small hamlets, a handicapped baby gets more respect than a baby with TB who has the potential to be totally cured. The second story is about a 14-year-old athlete who participated in the Nationals and hoped to represent India in the Olympics. Her own grit, determination and support from her mother and teacher helped her not only fight TB, but also continue her studies.

The third story, a heartrending one, is about Sunanda, married off at 15, who contracted HIV and TB from her husband, who had hidden his diseases from her. Sunanda developed spinal TB, difficult to diagnose and treat. However, despite being abandoned by her in-laws, she underwent prolonged treatment and pursued her Masters degree at the same time.

In other essays, Jadhav describes how TB patients are often abandoned by their families simply due to the stigma attached to the disease and poverty. A beedi-rolling female suffering from TB will hide her symptoms fearing loss of income for her family and ostracisation. The section on rat-eating Mahadalits is gut-wrenching as that is, at times, the only means of nutrition for them. The cause of death for many of them gets blurred between TB and starvation, even 75 years after Independence.

Despite the government’s best efforts, India finds it difficult to make much headway in eradicating the disease. As ‘Lives on the Edge’ brings out, there is widespread ignorance about TB, and the prejudices that come in the way of implementation of government schemes. The other challenges are gender and caste discrimination, undernutrition, lack of adequate health infrastructure, especially for management of extrapulmonary TB and the negative role played by vested interests like the village influencers. As the author points out, we can’t fight TB without combating all these.

Jadhav has very eloquently brought out how and why the under-privileged and marginalised sections like the transgenders, the rat-eating musahar Dalits, devdasis and those afflicted with HIV are ignored and abandoned by society, making it difficult for them to seek and complete the six-month treatment. Each inadequately treated patient contributes to drug-resistant TB, which is assuming dangerous proportions.

While pointing out what ails our society in its fight against TB, Jadhav notices sparks of hope. Aki, the athlete, and Sunanda not only fought TB, but also continued with their studies. Sunanda, in fact, joined as a coordinator in an NGO fighting HIV, and, at the same time, developed a matrimonial app to connect HIV-infected people. Jadhav also recounts the story of a devdasi who fought exploitation and formed an organisation working for devdasis.

Jadhav uses hard data to drive home issues. With more than 6.5 crore slum dwellers and over 10 crore tribals, both with limited resources and inadequate heath facilities, it is not difficult to visualise how difficult it is to eradicate TB. In each section of the book, Jadhav uses the insight he has developed to suggest remedial measures. He describes how Survivors Against TB, a community-based movement, is trying to get the survivors to be heard in policy-making. Sadly, there are not many such organisations in the country. The scholarly book should show the mirror to social scientists and public health specialists about their inadequacies in handling the tuberculosis crisis.