My perspective began to transform while conducting a study that examined barriers to diagnosing TB, diabetes, and other diseases. Initially, my mindset was still rooted in a traditional research approach: How do we find efficient ways to diagnose and treat? This study, however, laid out a mosaic of patient experiences. Distance, cost, gender, and logistical barriers often determine whether a patient receives timely care.

In a village in Chhattisgarh, for example, the nearest TB diagnostic facility was over 20 kilometres away. I repeatedly heard how a single cough that lingered for weeks wasn’t enough to drive them to the clinic because they couldn’t afford to lose a day’s wages. Or the label of ‘TB’ could prompt neighbours to ostracize their children. All these intangible experiences of fear, confusion, loss of dignity was in many ways more devastating than the disease itself.

Innovative efforts are being taken in closing the gap in access through community-based approaches. Simple changes like employing female staff for sputum collection have led to a sharp increase in women seeking TB testing. The TB champion or survivor programme has also demonstrated potential in normalising conversations through open experience sharing that helps break myths and misconceptions that fuel stigma. Through peer support groups and patient forums, survivors can challenge discrimination, promote early diagnosis, and foster an environment where TB is discussed without fear or shame. Personal stories can be a powerful tool to counter stigma and demonstrate that TB is not a death sentence but a treatable condition.

Another persistent challenge was the non-existent or unstructured engagement with the private health care sector. For instance, studies showed that people often relied on private chemists as the first point of contact. If symptoms persisted and finances allowed, they might seek a well-known private doctor. If that failed, they might switch multiple times before eventually stumbling upon a government hospital. Amid these meandering pathways, diagnosing TB early was often a stroke of luck rather than a systematic outcome.

In response to this challenge, the programme’s approach to engage the private sector has also shown promising dividends – considering, especially in urban areas, the penetration of the private health care sector. In the last ten years, notifications from the private sector have seen a 26-fold increase from 38,596 in 2013 to over 9.5 lakhs in 2024. An innovative private-public partnership programme (PPP), operational now in over 300 districts, has engaged private providers to ensure quality diagnostics, treatment, and adherence support is available. However, despite its success, there is room for improvement. Scaling up financial incentives for private providers, expanding free diagnostic and treatment linkages with private sector chemists and laboratories, involving informal providers and enhancing digital integration between public and private system can further augment efforts.

Lastly, we must look to invest in and swiftly roll out newer and more effective point-of-care diagnostics and safer and short treatment regimens to improve patient experience and address accessibility challenges. The Covid-19 pandemic evidenced that easy-to-use technologies such as tongue/nasal swabs can be a game-changer taking testing closer to communities. Parallelly, we must ensure that TB treatment research must go beyond cure rates—it must focus on reducing patient suffering. Future treatments should prioritise fewer side effects, reduced pill burdens, and shorter treatment durations to improve the overall patient experience.

My journey has evolved from treating a disease to understanding the social forces that shape health outcomes. From the early rollout of DOTS under Revised National TB Control Programme to the rebranded National TB Elimination Programme’s, India’s TB programme has made giant strides. Each policy milestone – mandatory notification, daily regimens, expanded diagnostics, digital tracing – reflects a move toward more inclusive and comprehensive care.

But we cannot stop here. If we persist in refining these strategies, securing resources, and continuously adapting to the realities patients face, India has every chance not just to control TB but to eliminate it. Despite the scale of challenges, I remain hopeful; I don’t think humanity has been closer than it is now – with the advanced diagnostic and treatment tools available today – to eliminating the TB epidemic.

This article is authored by Dr Vijayashree Yellappa, senior consultant, KNCV TB Plus, Hague, Netherlands.