India Cannot Eliminate TB Without Addressing This Hurdle

“When she joined back, her class teacher angrily told her to sit separately, in a corner,” Sankalp Yadav, her treating medical officer, told IndiaSpend. “She wasn’t allowed to meet her friends even during recess.” The teacher had got to know of the child’s TB status from the medical certificate she had submitted on rejoining.

The girl’s parents told Yadav that she was depressed. “Being stigmatised had affected her very badly,” he said.

Stigma are negative, often unreasonable beliefs that a person has about anything that cause him or her to react adversely to the subject. Insofar as diseases go, TB is feared globally, which is possibly why many people tend to react negatively when they get to know that a person is infected.

Yadav approached the child’s class teacher and explained that she was no longer infectious. “I told her that her pupil had already been on medicine for several weeks and that her sputum had turned negative,” said Yadav.

Essentially, the girl was no longer infectious.

Yadav’s intervention helped the teacher understand that there was no reason to isolate the child at school. After being allowed to mix freely with her classmates, the girl got back her confidence. She went on to complete the treatment and be declared tuberculosis-free.

Not every TB patient has someone to help them overcome stigmatisation. Kalika Gupta, associate professor at the Geetanjali Institute of Medical Sciences, Jaipur, has studied how the fear of being stigmatised keeps patients from getting themselves tested even if they have a persistent cough.

“Nine in ten patients with pulmonary TB have cough, and many of them self-medicate with cough syrups but that can at best only temporarily suppress the symptom,” said Gupta. “All this while, patients spread the disease.”

To evaluate the extent of such suppression and hence the missed TB cases--patients who should be receiving treatment but aren’t--Gupta studied the private sector sales of cough syrup and TB medicine (rifampicin-based fixed dose combinations) across Rajasthan from January 2021 to March 2024.

“My analysis showed that for every patient receiving treatment in the private sector, seven times as many were not,” said Gupta, who took up this study during the two-year Structured Operational Research Training Initiative (SORT IT) course of the Indian Council of Medical Research’s National Institute of Epidemiology (ICMR NIE) she is enrolled for, one of 12 mentees nationwide. She was supported by the ICMR NIE, the Central TB Division, the National TB Task Force and WHO India.

Gupta is of the opinion that the high missed numbers match the clinical experience of doctors in her hospital. “At the national level it is being said that India is in the TB elimination phase but our practice shows that TB is still rampant,” she said. “At the grassroots level, it doesn’t look like we are controlling TB, and we are nowhere near eliminating TB by 2025.”

Researchers model the TB care cascade to estimate the gaps, as we explained in May 2023. The number of patients with incident TB who did not access TB tests constitute gap 1, patients who did not get diagnosed constitute gap 2, those who did not register for treatment constitute gap 3, those who were not successfully cured comprise gap 4, and those who relapsed or died even after being treated constitute gap 5.

Gaps represent patient losses--essentially, patients who fell through the TB care net. In this context, India’s most significant gap was gap 1, according to a 2019 study published in PLOS Medicine, that concluded that half of all patient losses in India are individuals with incident TB who didn’t access a TB test.

Engaging private pharmacies to identify missing patients

In line with the aim to eliminate TB in India by 2025, five years ahead of the United Nations’ 2030 target, the government under the National Tuberculosis Elimination Programme (NTEP) has been pushing to boost the notification of cases. Consequently, India notified 2.6 million TB cases in 2024, a record for the country.

In Himachal Pradesh, the awareness that many TB cases are still being missed because patients resort to self-prescribing cough syrup has led the government to rope in private pharmacies to plug this gap.

“We’ve requested private pharmacies to let us know who is repeatedly buying cough syrup, or showing symptoms of tuberculosis, and refer such cases via a portal,” state tuberculosis officer Gopal Beri told IndiaSpend. “Our TB cell personnel have been able to reach out to about 4,521 presumptive patients through this initiative. But it’s challenging because people fear being stigmatised.”

“TB patients hesitate to divulge their personal details to pharmacists and cite privacy concerns,” agreed Pranati Jha, programme officer, Performance Management and Review, PATH, a global health not-for-profit working to improve health equity..

Over in Rajasthan, having quantified the likely missed cases in the private sector, which Gupta describes as “establishing proof of concept”, she is now leading a similar initiative to reach out to missed cases.

“In one district of the state, Jaipur II, we are requesting private chemists to collect the contact numbers and addresses of people buying cough syrup, and training them to conduct on-the-spot sputum tests,” said Gupta. “Since some patients may be reluctant to undergo a sputum exam, medical officers who are entrusted with the personal data will pass it on to ASHA [accredited social health activists] workers to visit patients’ homes to collect sputum samples.”

Roping in private pharmacies is seemingly a great idea to take forward the fight against TB. After all, “pharmacists are one of the first points of contact in the community”, said Deepak Balasubramanian, deputy director TB, South Asia, PATH.

The snag is, so far private pharmacies haven’t been able to keep up with other responsibilities the government has entrusted them with. For instance, they are required by the mandatory TB notification and Schedule H1 to report tuberculosis patients issued anti-TB drugs and maintain information of the prescriber.

But in 2022, less than 5% of registered pharmacists were reporting under NTEP, pointed out Jha. In fact, “stringent regulations have dissuaded many pharmacies to skip stocking TB drugs altogether,” she said.

Capturing accurate, timely data of all TB patients, both from the public and the private sectors, in a unified digital platform is vital to understand the distribution of missing patients and introduce focused interventions in those geographic and demographic areas to detect such cases. “Without comprehensive data, many patients go unrecorded, resulting in gaps in diagnosis and treatment,” said Balasubramanian.

Making private pharmacies more responsible

A significant hurdle in engaging private pharmacies, according to Jha, is the record-keeping involved in complying with the requirement. Besides, pharmacies are unaware of government incentives for reporting TB patients, a factor that she believed could perhaps have helped turnaround the situation. Private facilities--practitioners, hospitals, nursing homes, laboratories and chemists--reporting TB patients can claim Rs 500 from the government per notification.

Even where private pharmacies are aware of what is expected of them, Balasubramanian said a lack of training on maintaining Schedule H1 registers or using the Ni-kshay portal--the government’s digital system for TB case notification--is a key barrier to compliance.

Training would help change the situation.

“States such as Telangana, Uttar Pradesh where pharmacists have received training by the NTEP, facilitated by State Technical Support Units, on the importance of TB as a public health issue and the need to maintain appropriate records have shown improvement in data collection,” said Balasubramanian.

PATH has trained community pharmacists across more than 130 slums in Delhi, Hyderabad and Pune under the Take Charge Against TB programme during the first half of 2025, a public health initiative of Johnson & Johnson to address TB under-diagnosis. Frontline healthcare workers have been made more competent in screening and referral. Ways to eradicate stigmas and build trust in the community have also been addressed.

“Most pharmacists were being trained for the first time, they showed keen interest in spreading awareness of TB and referring TB symptomatic patients to the nearest health facility for testing,” said Balasubramanian. “In the two months after the training, more than a third of those trained started to screen people from vulnerable communities and refer them for testing.”

IndiaSpend has reached out to Urvashi Singh, deputy director general, Tuberculosis, Central TB Division, for the government’s plans to plug the gap in data collection by private pharmacies, and expanding the initiative started in Himachal Pradesh, to test habitual cough syrup consumers for TB. We will update this story when we receive a response.

Overcoming stigma at a societal level key to winning the fight against TB

Training for pharmacists and even frontline workers must extend to ways to address TB stigmas. Not only patients but also their family members and frontline workers interacting with them face stigma.

A recent study published in the Indian Journal of Tuberculosis interviewed all these three sets of people and found that one in four had faced stigma. Female patients were 13 times more likely to face stigma, a fact that co-author Vishwas Gupta of the Department of Pulmonary Medicine, Gandhi Medical College, Bhopal, attributed to women being victimised in every way in a male-dominated society.

“Many families don’t want to spend on the health of women, so women who fall sick end up being stigmatised as their being there or not doesn’t really matter,” said Gupta.

Those with less knowledge of the disease were three times more likely to be stigmatised, which Gupta said could possibly be “because they cannot defend themselves against people expressing prejudices”. Essentially, they may harbour a greater fear of the social and economic consequences following diagnosis.

Experiences of TB patients suggest that so far, training has not brought about the desired change in behaviour and perception in society nor in frontline workers.

Akshata Acharya, an actor and a survivor of multidrug resistant tuberculosis, vividly recalls being visited by a government official soon after being diagnosed at the age of 24, in May 2021.

“The officer inspected our home for ventilation and hygiene, and asked where I was likely to spend most of my time,” said Acharya. “We showed him an isolated space.”

Acharya had no cough nor respiratory distress. She had extrapulmonary TB, meaning a swollen lymph node--hers was behind the right ear. So no one was likely to suspect that she had TB. Still, the officer advised her parents not to tell anyone she had TB because it would “create problems later on”.

“We were taken aback when he said so because no one in my family or close friends circle had reacted strongly when they had gotten to know that I have TB,” said Acharya.

In time, others gave her the same advice. “A few colleagues told me not to openly say that I had TB because no one would want to work with me,” she said.

Yadav attested to having seen “factory hands diagnosed with TB not being allowed to work and elderly patients with the disease being deserted at old-age homes, because people--even family members--fear TB and don’t want to have anything to do with patients”.

While the National Tuberculosis Elimination Programme emphasises the creation of awareness in the community, there appears to be a shortage of people dedicated to changing the negative societal response to TB--both among patients and those around them.

Frontline workers under the NTEP include health visitors as well as counsellors but according to Gupta, counsellors are visibly absent. “In our area, Bhopal, for instance, no counsellor has been appointed,” he said.

“We have tried to raise the issue of insufficient human resources but this has not yielded any positive action so far,” said Gupta. “We understand that a shortage of funds for operations is the reason for this. Central authorities are receptive to requests for equipment but not for operational assistance. But we need more people to reach out to missing cases.”

Acharya has told her story in Eclipsed: Overcoming Disease, Despondency and Doldrum, and continues to create awareness about TB through Survivors Against Tuberculosis, of which she is a member. She wants to inspire conversations on TB.

“You cannot eliminate TB by brushing it under the carpet,” she said. “Addressing the taboo and rooting out the stigma are essential steps to that end.”

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