Many states have reported fewer TB deaths during the lockdown. Here’s why this is bad news

It suggests the system for tracking tuberculosis patients has collapsed.

India went into a lockdown starting March 24 midnight to contain the outbreak of the novel coronavirus. The eight weeks since then have been marked by reports of patients struggling to access healthcare and medicine. Yet, several states have reported a sharp decline in the number of tuberculosis deaths during this period, data accessed by Scroll.in shows.

Kerala, for instance, reported a nearly 60% decline of tuberculosis-related deaths in April. The state had reported 315 deaths from January to March this year – an average of 105 monthly deaths. In April, the number dropped to 39. In May, the plunge is even starker. Till May 20, the state had reported only four TB-related deaths.

Similarly, neighbouring Karnataka reported 472 TB-related deaths in January, 357 in February, and 292 in March. In April, though, the number sharply fell to 118. As of May 21, the state had reported 20 deaths.

This waning number of deaths during the lockdown is of a pattern.

In Jharkhand, the number of TB-related deaths in the first three months of the year were 118, 106 and 104 respectively. In April, the number dramatically dropped to 35.

The trend repeats in Assam, albeit, not as noticeably: 144, 131 and 117 deaths in January, February and March, compared to 76 in April. In the first 21 days of May, the state reported another 33 deaths.

Public health experts say that this decline in mortality belied logic. “There is no reason that the number of deaths would go down,” said Anant Bhan, a health researcher at Yenepoya University in Mangalore. “If anything, it would have gone up considering access to care and nutrition has been difficult during the lockdown.”

Some state officials claimed the decline reflected the success of the TB mitigation program in their state. “We have checked with the people in the field. It is because they had done good monitoring,” said Ramachandra Reddy who heads the TB program in Karnataka.

Compared to January, however, the death toll in the state in April dropped by a staggering 75% – a scenario unlikely to be a result of routine public health interventions, say observers.

Data lag?

Officials at India’s Central TB division warned against reading too much into the drop, saying that the data was incomplete. “We have a data freezing policy of a month minus one,” said Raghuram Rao, deputy additional director general at the division. He claimed April data would be freezed in the month of June. “The month of May is for data entry. The final data would be available in June.”

But field-level health workers say such a long lag was unlikely.

All data relating to India’s tuberculosis program – starting from notification of new diagnoses to deaths of notified patients – is logged on a real-time database called Nikshay by them.

“We may update a new notification a day later but deaths are logged into the system immediately because there are financial implications,” said Bitupan Bhuyan, a senior treatment supervisor at a tuberculosis unit in Upper Assam’s Dibrugarh.

All notified TB patients in India are paid an amount of Rs 500 a month through direct bank transfer during the course of their treatment for nutritional support. “If a patient dies on the last day of the month and we don’t update it that day itself and the money for the next month gets transferred to their account, we are answerable,” said Bhuyan. “It is precisely for that reason that we have been given tablet devices for immediate updation of deaths.”

Another senior treatment supervisor in Odisha’s Khordha district reiterated the same view. New notifications and deaths were invariably entered into the Nikshay database “real-time”, the person said.

In Jharkhand’s Jamtara, treatment supervisor Baidyanath Hembram said delays did happen at times if the local community health worker “forgot” to update the tuberculosis unit. “But that could be a couple of days,” he said. “Definitely not more than a month.”

A stressed system

Does this then mean that TB patients are dying and the monitoring mechanism has simply missed them?

Some state officials concede that that may indeed be the case as field-level workers may have not been able to follow up on them because of the lockdown.

In India, once a patient is diagnosed with tuberculosis, they are notified as being part of India’s National Tuberculosis Elimination Program. Protocol mandated that community health workers follow up on notified patients, making sure that they consume their medicines and show up for scheduled appointments at the tuberculosis unit for health check-ups and to collect medicines.

But the lockdown has resulted in a significant disruption of this system: patients have been unable to travel to the clinics for their appointments. States have tried to improvise by ensuring doorstep delivery of medicines, but the lack of adequate manpower may have deterred these efforts.

“Most of our staff are involved in Covid work,” said Rajiv Pathak, a World Health Organisation consultant in Jharkhand’s National Tuberculosis Elimination Program. “When you don’t know properly about the [progress of] patients, you cannot report their status.”

Indeed, it seemed to have become quite the task to keep track of notified patients during the stringent phase of the lockdown. “First there is Covid duty, then whatever time is left of day we try following up over the phone or through the community assistants,” said Hembram, who is in charge of the TB unit in Jamatara’s Narayanpur block. “But then some people do not even have phones, and many villages had completely blocked entry of outsiders during the lockdown.”

Hembram’s TB unit, which serves a population of 20,000 people, has 53 patients on its rolls currently. On average, a death or two is reported every month, but none was reported in April, according to official records. Although Hembram said it was unlikely that someone enrolled in the treatment module died, he did not discount the possibility altogether. “Maybe the anganwadi workers did not inform me as they are also scared to step out,” he said. “Because there is this fear: who knows what will happen if we roam around from village to village.”

When will ‘normal’ come?

But state officials insist that deaths would not go unaccounted forever. “Due to the lockdown, it is possible that [health workers] did not have access to the Nikshay portal,” said Kerala’s state TB officer, Sunil Kumar M. “It will be updated soon.”

Pathak offered a similar view. “Once things go back to normal, the deaths that have happened during this period and gone unreported will be captured.”

But many are sceptical. “I don’t think these deaths will be accounted for in a retrospective manner,” said Chapal Mehra, convener of Survivors against TB, a patient advocacy group. “The way the current pandemic is progressing and resources are getting redirected, I don’t think normal TB services are going to resume anytime soon, so it won’t be easy to back trace the data.”

Nerges Mistry of the Mumbai-based Foundation for Medical Research concurred. “I am not optimistic that normalcy, whenever it comes, will see the eventual retrospective entry of the missed-out death records,” he said.

Present tense, future imperfect

These apprehensions stem from the fear that the future could be even more chaotic and bleak.

Tuberculosis kills 400,000 Indians every year on average – up to 50 deaths every hour.

Already, there is near-unanimous consensus among officials, experts and the civil society that the Covid-19 pandemic and the subsequent reallocation of resources to combat it has come as a body blow to India’s TB program.

The number of new cases being notified has come down drastically: this means people are going undiagnosed.

Even more disconcertingly, the decline in number of reported deaths since the lockdown is an “early warning sign” that not all is well even with notified patients – the system that allowed for them to be closely tracked while undergoing treatment has collapsed, say some experts.

Madhukar Pai, director of the McGill International TB Centre in Canada explained: “Everyone agrees that TB case notifications have dramatically gone down in the past couple of months [but] people who were already known to have TB are also struggling because they are not able to get their repeat medicines on time, nor are they getting support to stay on treatment.”

In the absence of publicly available data on the delivery of TB medicines to notified patients, the sharp drop in reported deaths is possibly the clearest window into the lockdown’s impact on them.

“A lot of infected people, particularly with comorbidities, come at the last stage and die in the hospital itself within a few days,” said a treatment supervisor in Odisha’s Cuttack district. “Now, no one is coming, so obviously, there are no new notifications or deaths.”

An ominous interpretation of this is: people are dying of TB at their homes, undetected and possibly infecting others close to them.

“I worry a lot about the increase in TB mortality in the coming months,” Pai warned.

‘A big TB crisis’

Ground-level workers have grim accounts to share. In Assam, Abhijit Barua, who mans a government TB unit in Sonitpur district with around 80 patients on its rolls, said follow-ups were becoming increasingly difficult. “Since the last week, the lab technicians at all the four designated labs in the area have been on Covid duty, collecting swab samples of people who have come back from other states,” said Barua. “So, we just can’t do sputum tests which are important to gauge the efficacy of treatment.”

After a patient is diagnosed with tuberculosis, they undergo what is known as the “intensive phase” for the first 56 days. To evaluate the progress made, a mandatory sputum test is conducted after that period on all patients. If the test result shows improvement, the patient’s “continuation phase” of treatment is initiated.

Rao of the Central TB division said things would improve soon. “After a disaster, things will take a hit,” he said.

But even within the government, officials said India ought to act fast or years of gains would be undone.

“There are scores of suspected TB patients coming into our hospitals, but we just cannot get them tested because all resources have been redirected to Covid,” said a district TB officer in a state in eastern India. “We are staring at a big TB crisis in the country.”