Globally, and in India, tuberculosis (TB) continues to loom large as a public health challenge impacting millions. Despite ambitious goals set by India’s health authorities to eliminate TB, the challenge is huge and progress is not fast enough. Access to efficient and high quality care — diagnosis, treatment and support — is still not available to every person suspected to have TB or diagnosed with the disease. As India grapples with the complexities of controlling TB, we need a paradigm shift urgently — one that places those affected and their lived experiences at the centre of tackling this ancient disease.
At the core of this shift lies a fundamental recognition: the needs and the interests of patients and communities must be prioritised within the care paradigm and the health-care system. This principle, echoed by survivors, communities, health experts and policymakers, underscores the need for a person-centred approach to TB care and management.
Understanding lived experiences
Perhaps our greatest gap has been in understanding the lived experiences of the affected individual fighting and surviving TB. Too easily, we assume their needs, their challenges, and their expectations. In no other service paradigm are the voices of end users ignored. We have, at times, been guilty of over-medicalising this disease, as doctors and public health folks often do. We have often forgotten to see TB as a human crisis, a gendered crisis, an economic challenge, and a social and environmental one as well.
Over the years, this has been changing, with the emergence of strong TB survivor advocates who have stridently worked to put the needs of affected communities on the table. They have sought change in key areas and governments have listened and modified their own approach to meet community needs. A case in point is nutritional support, which while limited, is an important step. Further, the growing focus on patient support, addressing stigma, and gendered aspects of TB has also been important.
Is this enough? Not entirely. To provide high quality, person-centred care, we need to bridge the gap between policy intent and on-the-ground realities. For instance, India needs to prioritise targeted interventions aimed at improving and expanding access to TB diagnosis and treatment. We need to expand the reach of TB testing facilities, particularly in rural and underserved areas, and ensure the availability of free, affordable and quality-assured TB drugs. Molecular testing is the gold standard and less than a quarter of symptomatic patients are getting that as their first test. Recent reports of drug and diagnostics stockouts are troubling and unacceptable.
Care needs to be more humane
Additionally, we need to focus on efforts to make care more humane. Hence, mental health support and gender responsive care become critically important. Efforts are also needed to strengthen community-based TB care models, empowering frontline health-care workers to deliver comprehensive care which addresses not just treatment but also social, economic and mental health needs and is closer to where patients live. This is important as survivor narratives tell us the stigma, discrimination and mental stress they go through, not to mention the side-effects of treatment.
By supporting frontline TB workers, strengthening supply chains and procurement mechanisms, decentralising TB services and empowering local communities, India can reduce stigma, overcome barriers to access and enhance treatment outcomes.
While TB can affect people of any class, religion, ethnicity, and socioeconomic status, it disproportionately affects the most marginalised in society, including children, the urban poor, prisoners, and people living with HIV/AIDS. The disease has gone beyond being a health crisis alone. It is an economic crisis which by some estimates, costs India billions in losses each year and pushes families and communities into debt and poverty.
Addressing the socio-economic determinants of TB requires a multi-sectoral approach. Poverty alleviation, improvement in nutritional status, well-ventilated housing and better air quality will all contribute towards reducing TB. Recent research has shown that nutritional supplementation reduced TB incidence substantially in household contacts of adults with microbiologically confirmed pulmonary TB. By tackling the underlying root causes of TB, India can make significant strides towards eliminating the disease and improving the overall health and well-being of its population.
Tapping technology
Leveraging technology and innovation holds promise in enhancing TB care efforts in India. The adoption of AI and digital health solutions for TB diagnosis, adherence and surveillance can revolutionise the way TB care is delivered and accessed in the country. By investing in developing better vaccines, we can hope to ultimately eliminate this airborne disease.
The path to TB elimination in India requires a concerted effort to prioritise person-centred care, address social determinants of health, and embrace innovation. By adopting a holistic and person-centred approach, India can overcome the barriers that stand in the way of TB control and create a healthier future for all its citizens.
Dr. Soumya Swaminathan is the Chairperson of M.S. Swaminathan Research Foundation (MSSRF). She was the Chief Scientist of the World Health Organization (WHO). Chapal Mehra is a public health specialist and the Convenor of Survivors Against TB (SATB)
