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In Delhi, the COVID-19 Lockdown Leaves TB Patients Groping in the Dark

In Delhi, the COVID-19 Lockdown Leaves TB Patients Groping in the Dark

New Delhi: The unprecedented lockdown to beat the novel coronavirus epidemic has placed India’s tuberculosis (TB) patients in more danger than usual as they are both at larger risk of developing a severe COVID-19 infection and have been the longstanding victims of large-scale economic marginalisation.

India has the world’s highest burden of TB as well as multidrug-resistant (MDR) TB among all nations, and recently vowed to eliminate the disease by as early as 2025. The country’s urban TB epidemiology is characterised by low prevalence, high dissemination and higher incidence [footnote]Prevalence is the number of existing cases and incidence is the number of new cases in a time period[/footnote]. The high TB burden in urban slums with relatively inadequate healthcare facilities makes managing the disease in urban centres extremely difficult.

Now, the anti-coronavirus lockdown has only exacerbated this difficulty, spotlighting TB patients’ issues of accessibility. For example, Harmukh Singh[footnote]Name changed to protect identity[/footnote], is a 44-year-old electrician in Northeast Delhi. He was diagnosed with TB in February 2020 at a local DOTS[footnote]Short for ‘direct observation therapy, short-course’, which is the WHO-recommended control strategy[/footnote] centre. His son also works as an electrician, and they are both the family’s breadwinners. They were prescribed medication for two weeks but when the lockdown began with only four hours’ notice, they couldn’t procure the drugs in time. And because public transportation was initially unavailable, they were forced to take a neighbour’s help as well as arranged to pay for a full month’s supply.

Notification is an integral part of the TB recovery programme. According to a review article in the European Respiratory Journal, “notification is defined as the process of reporting diagnosed TB cases to relevant health authorities, which in turn report them to the WHO through national TB programmes or their equivalent.” It helps ensure patients receive as well as complete their course of medication, and get the monthly nutrition allowance of Rs 500.

India’s ambition, specified by Prime Minister Narendra Modi, to eliminate TB by 2025 is five years ahead of the global target. One way the pandemic and the lockdown could get in the way of this mission is by field personnel (e.g. doctors, nurses and public health officials) and diagnostic kits both designated to deal with TB patients being coopted to deal with COVID-19 patients and diagnostics.

Mohan[footnote]Name changed to protect identity[/footnote], 49, is a helper at a shop in North Delhi. He was diagnosed with TB in November 2019, and said he didn’t receive any calls from the local DOTS centre or the doctor who visited him about the impending lockdown, and how it might affect his treatment. He even said he learnt he was more at risk of developing a severe COVID-19  infection as a result of TB’s effects only from a neighbour.

(Experts from the WHO have noted that while data on COVID-19 infections in TB patients is scarce, it’s possible that people who are ill with both diseases will have worse results for treatment, particularly if TB care is disrupted.)

His DOTS centre gives him free DOTS but he has to buy cough syrup, which has been hard to get. He earns about 8,000 rupees a month so he also has to ration the syrup and other drugs once he gets them. To make matters worse, Mohan said he did not get the promised 500 rupees every month, which is part of a scheme the government had specially designed to help people like him.

Data on Nikshay, the country’s official TB portal, indicates there were 114,460 new TB cases between February 14 and 29; some 83,700 of them (73.1%) were being treated at government hospitals. The coronavirus outbreak in India came on the national radar early in March.

Divesh Singh, a law student and paralegal with the Delhi State Legal Services Authority, has been volunteering to deliver medicines to the doorsteps of these patients. “Women, children and malnourished people who can’t afford a proper diet are the most affected in the Indian population. Hygiene and sanitation remain major concerns,” he said.

Poverty is linked with a significantly higher risk of acquiring TB, and socioeconomic conditions are known to be correlated with TB incidence and negative care consequences. In India, for example, the incidence of self-reported TB in the lowest income quintile was found to be 5.5-times higher than in the highest income quintile, according to the 2005 National Family Health Survey (NFHS-3).

Balkrishnan, 50, is a government employee. He was diagnosed with TB in January 2020, and commenced his drug regimen on January 16. Like Mohan, he hasn’t received any calls or messages from the local DOTS centre, and the lockdown caught him off-guard. A relative arranged for his medicines to last for a month. However, Balkrishnan said his next appointment is due on April 28, and he doesn’t know what to expect or what will happen.

In the absence of information needed to combat the disease, patients are often forced to choose their own courses of action. And without timely government intervention and support, patients could stop taking their medicines or potentially infect others. Both outcomes, among others, are dangerous – especially the former because the disease can relapse or even devolve into MDR-TB.

Fehmi[footnote]Name changed to protect identity[/footnote], a daily wage labourer living in Delhi’s northwest, was diagnosed with TB in September 2019. Earlier, his wife had died of tuberculosis, so he said his children are familiar with all the “procedures”. However, he couldn’t get his medication this week and missed taking it for three days because his children weren’t allowed to visit the DOTS centre. His finances don’t permit him to get medicines from private hospitals either. So he was forced to restart his course.

Harmukh Singh, Mohan, Balkrishnan and Fehmi could all use a door-to-door service during the lockdown, as well as regular phone calls from their local DOTS centres checking in on them, encouraging them to stick with the treatment and sharing information about support services they can avail. India can’t afford to beat the COVID-19 epidemic at the cost of its TB epidemic.

Suchitra is a freelance journalist focussing on governance and social justice, primarily gender justice. She tweets at @Suchitrawrites.

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