Tejal, a young and ambitious girl from a poor informal settlement in Vadodara, was hopeful about building a career – until TB entered her life. From one doctor to another and through innumerable tests, it took her over a year to be diagnosed with drug-resistant TB. By the time she held the final report in her hands, she had seen countless doctors and was close to Rs 50,000 in debt.
“Why was I not diagnosed in one go?” she asked. “Why is it so hard to diagnose TB?”
Diagnosis is the first and most critical step in addressing and treating TB. An accurate diagnosis is not only the basis for treating an individual – it is also essential for investigating others in their family and immediate environment. While science has made remarkable strides in TB diagnosis and treatment, for many, the journey from the first symptom to a confirmed diagnosis remains fraught with challenges.
Access to accurate diagnostic services continues to be a major hurdle in India. Many health centres still rely on outdated methods like sputum smear microscopy, which are less effective – especially for people with HIV or children. While modern molecular diagnostics exist, they are often too expensive or unavailable where they’re needed most.
Even in urban settings, where platforms like GeneXpert are available, long wait times, overcrowded facilities, shortages of cartridges, and administrative red tape often deter people from following through. Meanwhile, private-sector testing is unaffordable for most, rendering diagnosis virtually inaccessible.
Significant barriers
In India, access and affordability are deeply linked, and they remain significant barriers to timely TB diagnosis. While the government offers free TB testing, public healthcare facilities are often overcrowded, with long queues and frequent stockouts of diagnostic tools. This forces people to seek private testing, where costs are prohibitively high. Even when tests are technically free, hidden expenses such as travel, lost wages, or multiple visits make diagnosis inaccessible for many. This financial strain discourages early testing and contributes to delayed diagnoses – further fueling the spread of the disease.
Bridging this gap requires strengthening public diagnostic services and ensuring truly cost-free access for the most vulnerable, with support mechanisms in place to ease the hidden burdens.
Beyond access and affordability lies the challenge of awareness. Many people do not recognise TB symptoms until it’s too late. A persistent cough, weight loss, and night sweats are often mistaken for exhaustion or seasonal illness. Most doctors don’t even order a TB test until the disease has progressed. Stigma is another powerful force – it thrives in silence. TB remains stigmatised, seen as a disease of the poor and the weak. This perception prevents people from seeking the diagnosis they urgently need.
Trust in healthcare systems is crucial. Many communities have had experiences that make them wary of doctors and hospitals – long wait times, dismissive treatment, or impersonal interactions. Diagnosis, then, is not just about medical tests. It is about creating spaces where people feel safe enough to come forward. Community health workers, trained from within these communities, can bridge this gap. When someone sees a familiar face – someone who understands their fears – they are more willing to seek diagnosis.
Programme design
One of the biggest gaps in TB programmes has been treating communities as beneficiaries, not partners. The design and delivery of diagnostic services must start with the people. What do they need? What barriers do they face? What solutions do they see? These questions must guide policy and programme design. When communities are included from the beginning, the solutions that emerge are more sustainable and effective.
So, how do we close the TB diagnostic gap? We must invest in a variety of diagnostic tools that can be deployed at multiple levels of the health system. Multi-disease platforms are worth exploring, as molecular diagnostics can detect multiple infectious diseases simultaneously – saving both time and cost.
We also need intensified case finding alongside diagnostic expansion. Most people do not seek diagnosis or health services until much later – so early case detection within communities is essential. At the same time, we must build public awareness and trust in early diagnosis, while ensuring treatment is accessible and uninterrupted throughout the care cycle.
Education campaigns must be rooted in local realities tuberculosis in the languages people speak, through community leaders, TB survivor voices, and culturally relevant storytelling. This not only increases awareness but also reduces stigma, one of the key deterrents to diagnosis.
TB survivors and their stories hold immense power. A person who has navigated the labyrinth of delayed testing, misdiagnosis, or stigma can help reshape how the health system approaches diagnosis, making it more person-centred and compassionate. If we truly want to close the TB diagnostic gap, we need to invest heavily in new diagnostics, all the way to the last mile—so that anyone, anywhere, can get tested without facing the hurdles of access, cost, or unreliability.
Ending TB requires investment, community participation, intensified case finding, and a rethinking of how we approach TB diagnosis. The best solutions will come from community consultations and from the lived realities of those for whom early diagnosis could mean the difference between life and death.
March 24 is World TB Day.
Chapal Mehra is a public health specialist and the Convenor of Survivors Against TB (SATB), a collective of survivors, advocates and experts working on TB and related comorbidities. Vashita Madan is the communications lead with SATB.
