TB has typically been a men's disease. In Mumbai, that is changing

In the summer of 2020, the one-bedroom apartment that Sangeeta Shedge shared with her husband and twin daughters in the center of Mumbai was cramped, swelteringly hot in the Indian summer heat, and only had one window, overlooking the busy housing complex below. But inside the confines of its brightly painted walls, the 49-year-old felt safe.

“It was very tense, at that time,” she remembered. “I only went outside to get groceries, because we were afraid of Covid.”

When the pandemic arrived in India, Mumbai, one of the most densely populated cities in the world, entered a strict lockdown. But as Sangeeta would discover, confinement to overcrowded and poorly-ventilated houses placed their inhabitants at risk of a different, much older airborne disease; six months after the lockdown began, in September 2020, she was diagnosed with tuberculosis.

Before COVID-19, Mumbai’s tuberculosis cases had followed the same pattern seen across most of the rest of the world, with men making up the majority of notified cases; globally, men account for 57% of cases, whereas women account for just 32%, while the remaining 11% are children, according to 2018 WHO data.

But data from the Brihanmumbai Municipal Corporation, the governing civic body in Mumbai, shows a sharp reversal of those trends over the past two years — with notified cases of tuberculosis in female patients overtaking those of men in the city.

While notified cases for men dropped by 12% from 31,160 in 2019, to 27,275 in 2021, notified cases for women increased by 7%, from 29,214 to 31,237. Mumbai is one of India’s hotspots for TB, contributing to almost 30% of India’s cases, which stood at 2,145,422 in 2021, according to data gathered through a right of information request.

There’s no consensus yet on what might have caused the reversal, although BMC is in the process of carrying out a base survey in all 24 districts to investigate. Dr. Vikas Oswal, a chest physician in Mumbai specializing in tuberculosis, said that he has seen “a 20% increment in female [cases]” over the past two years. His hypothesis is that preexisting gender inequalities, which act as risk multipliers for tuberculosis, such as women being more confined to the home in poorly-ventilated spaces, may have been exacerbated by the pandemic.

However, Dr. Sreenivas Nair, regional adviser at Stop TB Partnership, thought indoor air transmission did not play a major role. “It could have led to some additional cases,” he said, “but that alone will not explain the big difference in the reversal of the notification system, which we see among the male and female in Mumbai.”

Notified cases, he cautions, do not give the full picture, and the trend reversal could also be attributed to more men going undiagnosed as case notifications dropped overall during the pandemic.

Food insecurity as a driver

One factor that Nair believed could have caused an increase in female case numbers is malnutrition, which can act as a trigger for activating dormant tuberculosis in the body.

Women were already more likely to suffer from food insecurity than men, and this inequality deepened during the pandemic. “People lost their jobs, income was less,” said Oswal. “So there was a compromise on food. And when there is compromise on food, the first compromise, it's always done by the female.”

At the beginning of the lockdown, Sangeeta’s husband lost his job, leaving the family without a source of income. They had help from family members, but “still it was a huge, huge problem, I was struggling a lot to buy food,” she said.

BMC is attempting to address concerns about malnutrition by providing a cash transfer of 500 Indian rupees ($6.5), each month to tuberculosis patients for the duration of their treatment. The payments are initiated automatically when the patient’s details are first entered into an online system, whether by the BMC, a private health care provider, or an NGO, ensuring that all patients are able to access free government resources.

“Since such a large portion [an estimated 50%] of the patient load accesses the private health care system, it is imperative that the government engages with private service providers to offer government resources to eligible and needy patients,” Dr. Pranita Tipre, a TB officer at BMC, explained.

Under the program, Sangeeta’s family members were also screened for TB — part of what BMC refers to as “active case finding,” in an attempt to identify and treat TB patients in the community as early as possible.

This is particularly significant for women, who are less likely to actively seek health care. “Women come to care much later,” said Leena Menghaney, a public health lawyer and regional adviser at Médecins Sans Frontières. “That means they get much sicker before they seek health care, so therefore the outcomes are much poorer.” This has become more pronounced during the pandemic, because “when you're isolated,” she said, “the chances of you having the resources to seek health care are much, much more remote.”

Continuity of treatment, once it is sought out, is equally important in the response to TB. Nonadherence to drug regimens is the primary cause of treatment failure and can lead to the emergence of drug resistance. Although men have overall statistically lower drug compliance rates, gendered expectations of the division of labor combined with lower decision-making powers in the household are a risk factor for nonadherence in women.

When Namrata Yadav, a TB survivor who now volunteers with MSF, was first diagnosed, she discovered the medication made her feel nauseous, and left her unable to complete the housework and look after her two young children. “I’m the only daughter-in-law in the house, so the entire responsibility was on me,” the 30-year-old said. She started skipping doses, and soon tested positive again; but this time for multidrug-resistant TB.

Referred to MSF’s Mumbai clinic, she underwent counseling to persuade her of the importance of adhering to the drug regimen and help her manage the side effects.

Peer-to-peer approach

Namrata was cured of TB in 2019 and joined MSF as a peer educator the same year. She now helps to counsel others, as part of a holistic approach toward TB treatment being modeled by the NGO to improve adherence and provide rounded psychological and social support.

While Menghaney endorses this holistic approach, she believes it needs to go further by looking at the lingering socioeconomic impacts of TB for women even after they are cured.

“For women with TB, one of the first challenges that they face is eviction from the household or complete isolation. And one of the first responses is that the children are taken away from them,” she said. “It has a huge impact on the women's mental health.”

Multiple studies have shown a sharp increase in the rates of domestic violence against women during the pandemic; something which Menghaney feels has not been addressed widely enough in the response to TB. “That is a missing element from almost all programs,” she said.

For Namrata, speaking out about her experience in her role as peer educator not only helps the patients she counsels but has also helped her to overcome her own stigma.

“Some patients are afraid of disclosing that they had TB, but I feel proud to tell [them] that I had TB, and that I survived,” she said. “If you’re really a peer educator, role model, patient activist, then you need to overcome this barrier and self-stigma.”

Nair says that hearing such stories from TB survivors makes him feel “very hopeful.”

“Bad news is also good news if people respond to it,” he said. Despite the possibility that BMC data may represent a rise in TB cases in women amid ongoing struggles against the disease in Mumbai, “there are so many efforts going on to address that,” he said. “I think that is a much bigger story.”

This project was funded by the European Journalism Centre, through the Global Health Security Call. This program is supported by the Bill & Melinda Gates Foundation. Devex maintains full editorial control of the content.