India accounts for over 27 per cent of the world's 10.8 million TB cases. Experts throw light on the ailment and talk about the role of community and survivors
TB has killed more people in history than any other infectious disease. Mycobacterium Tuberculosis continues to ravage communities and societies across the globe since its emergence 9000 years ago. India bears disproportionately large burden of the global TB incidence, accounting for over 27 per cent of the world’s 10.8 million TB cases. This burden is further exacerbated as India also is a leading country for people with multiple drug-resistant forms (MDR-TB) that do not respond to commonly used medicines and aggravate mortality.
Multiple factors contribute to the growing rates of TB: Tuberculosis is a social disease. The under-privileged are disproportionately affected due to poor living conditions, malnutrition and access to healthcare. Stigma leads to underreporting and ostracization within the community and the workplaces. The long treatment period leads to poor compliance, and the chronic nature of the disease leads to rising mortality.
“The severity of the epidemic has led to a host of TB control initiatives in the country with the Government committed to eradicating TB by 2025. We have made great strides in TB care. The scaling-up of diagnosis and treatment and an efficient system has saved millions of lives. However, while these successes are commendable, there remain gaps, such as the medicalised perception of TB, that need to be addressed. For too long, the focus has been on diagnosis and treatment of disease, with minimal attention to supportive services, making TB redressal a challenge,” Dr Dalbir Singh, President, Global Coalition for TB, says.
TB is a multifaceted issue involving society, gender, and inequalities. Viewing it through a solely medical lens hinders our opportunities for patient care. A TB patient’s first interface with a medical service is often an unfamiliar hospital environment, where a heavy emphasis on technical knowledge and treatment procedures reinforces the patient’s growing anxieties. A large part of making TB services accessible involves demystifying the disease. While counselling services ensure that patients are adequately sensitised regarding their illness, these are still centralised facilities that are inaccessible for many. We need to move towards decentralised patient-centric approaches that serve to reduce the burden on marginalised communities.
“While we work towards making TB care more accessible, we must also consider the experiences of those affected by TB. Often, programmes are designed from a position of expertise that fails to account for the needs of those the programme aims to benefit. There is a glaring absence of the patient’s voice in our TB control initiatives and a subsequent lack of understanding of the patient experience. The voices of those affected by TB matter because they break through pre-existing perceptions and provide real experiences and needs of those that have survived TB. There is a need for a sustained effort focused on benefiting them, easing their experiences, empowering them and making them the voice for change,” Dr Rajeev Gowda, Former Rajya Sabha member, adds.
The fight against TB requires the combined effort of many sectors. The pandemic has shown us that it is possible to tackle such diseases if we work together and that there is much to be learned from the COVID-19 response.