Mumbai: In April, 15-year-old P* experienced what she said was an “unbearable” body ache and went to a private clinic, where she was diagnosed with tuberculosis (TB), an ongoing global epidemic and, before Covid-19, the world’s leading cause of death from a single infectious agent.
A month later, her sister, A*, 17, was also diagnosed with TB, a debilitating but curable and preventive infectious disease. Spread by a bacterium, it usually attacks the lungs but can spread to other organs, including the brain.
After their father’s death seven years ago, the girls lived in a one-room home in a Mumbai slum, with their mother and three sisters. Their mother—her only income from the rent on their other one-room home—did her best to make ends meet, but the health and nutrition of the girls suffered.
P and A suffered from jaundice very frequently in their childhood and lost weight and appetite.
The girls started their TB treatment at a private clinic, but they could not, like many Indians, afford the treatment, which consumed about 40% of their only source of income, the monthly rent from their other home.
A 2020 study from Tamil Nadu showed that the direct costs for TB treatment (diagnostics, medicine, travel costs, food etc) in public facilities, where treatment is supposedly free, was $61.7 (Rs 5,045) and more than six times costlier in private facilities at $406.1 (Rs 33,206) or 22% of India’s average per capita income.
The sisters went to a government centre that offered what is called directly observed treatment, short-course (DOTs), which provides regular, monitored medication, a method that the World Health Organisation (WHO) recommends as the most cost-effective and curative method to manage TB. This short-course lasts between six and eight months.
When we met her in July 2022, A had lost 10 kg, seven months after being diagnosed with TB. P had left college because of these health complications.
“It’s not like we wouldn’t have fallen sick if we had more money,” said P. “This is all because of our luck.”
But getting and treating TB is not about luck. It is connected directly with poverty and also to State funding and medical management of TB, which has always been inadequate but now is being outsourced—in part—to private donors in a new union government programme that is replete with flaws, according to our research and other reportage.
While India’s annual budget to control TB in 2021 was Rs 3,600 crore, the government of Prime Minister Narendra Modi now hopes to raise Rs 7,380 crore (assuming Rs 1,500 as nutrition support for 4.1 million patients) for nutrition alone, to be funded by the new donor programme, called Ni-Kshay 2.0, the latest in a long line of names and nomenclature used for TB-control programmes.
India’s Burden Of TB
In September 2022, President Droupadi Murmu launched the Ni-kshay Mitra initiative, inviting companies, politicians, NGOs and individuals to provide “community support” to “ensure additional diagnostic, nutritional, and vocational support to those on TB treatment.”
Murmu offered a reminder of the government aim to eliminate TB by 2025. But, our field work and findings suggest that may be an overambitious target.
“TB is a disease of poverty, and economic distress, vulnerability, marginalization, stigma and discrimination are often faced by people affected by TB,” according to the WHO. TB flourishes under conditions of low immunity due to lack of nutrition and food availability.
India is the highest contributor to global TB cases with nearly 3 million, accounting for 26% of cases and 34% of all deaths worldwide. But the majority of TB cases are not reported to the government health system.
New TB cases were expected to come down to 193 per 100,000 by the WHO’s estimation, but rose instead, according to a national TB prevalence survey between 2019 and 2021, to 316 because patients could not be treated adequately during the Covid-19 pandemic.
During the two Covid-19 years of 2020 and 2021, India’s fight against TB, “encountered setbacks in decades of gains”, said the union government’s annual TB report in 2022.
The government reported a 19% surge in 2021 over the previous year in TB “notifications”, as cases reported to health authorities are called. Covid-19 pushed notifications down by 46% between March and June 2020, compared to the same period in 2019, IndiaSpend reported in June 2020.
The national TB prevalence survey for 2019-2021 also estimated that 64% of TB cases did not even seek health care, which means they were not officially recorded.
Social Determinants Of Health & TB
“More than 40% of the population in India carry TB bacteria in their body, but they may not suffer from TB disease,” said Ravichandra C, chief medical officer of the National Tuberculosis Institute during a webinar in March 2022. “There is only a 10% chance that someone infected with TB bacteria will catch TB disease.”
One of the most significant reasons for the TB infection to progress to TB disease is low immunity. Over the decades, many studies have shown (here, here, and here) that immunity is determined by social status, such as poverty, and the resulting lack of nutrition, which lower the body’s ability to fight the TB bacterium.
These conditions are, in academic terms, also called social determinants of health (SDH). The WHO defines SDH as “non-medical factors that influence health outcomes”.
“They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life,” says the WHO. “These forces and systems include economic policies and systems, development agendas, social norms, social policies and political systems.”
Who contracts and who recovers from TB is determined by their social position and the nutrition that it allows them.
While President Murmu, an Adivasi, declared that TB would be “eliminated” by 2025, India had already slipped further in the 2022 Human Development Index (HDI) to 132 from 129 in 2019 indicating that poverty had increased in the country. Adivasi populations are particularly vulnerable with more than double the prevalence of TB at 703 per 100,000 Indians.
Although the slippage in HDI is partly attributable to Covid-19-related loss of livelihoods and education, it started before the pandemic.
Gender also plays a crucial role in TB susceptibility, diagnosis, access and adherence to treatment and supportive care. While men account for the majority of TB cases in India and globally, women and transgender persons account for over a million TB cases each year or 39.14% of India’s 2.13 million notified TB cases in 2021. TB is also the leading cause of maternal deaths in India.
A 2018 rapid assessment study of gender and TB in India concluded that a gender lens is necessary “to enable a better-informed response that may inspire new strategies and new research needed to end TB in India.”
Women and girls face a greater burden of household chores, lack financial and decision-making ability about their own bodies. They are also more likely to be affected by malnutrition, undernutrition and anaemia, all factors that make them more susceptible to TB infection and disease.
In 2020, when B* (42) contracted TB, her in-laws asked her to move out until she was properly cured. She went to her brother’s place, a cramped two-room set in a Slum Rehabilitation Authority building in the eastern Mumbai suburb of Govandi.
Often, women affected by TB are seen as unfit to meet the expectations of a patriarchal household—in particular, household chores and child rearing. The stigma of TB affects the life of women in both urban and rural India. Married women may even face abandonment and/or face violence at home; and unmarried women find it difficult to find suitors for marriage.
B’s brother is a driver and his wife a domestic worker. Their two-room home is home to seven—B’s brother, his wife, two step-children, two children of his own and now B. A month after B moved in, her step-niece Z* (19) also contracted TB.
Multiple studies (here, here, and here) have shown that poor ventilation and household crowding increase the likelihood of TB infection.
On most days, Z felt weak and did not eat or drink anything. She has had many illnesses in her childhood, such as malaria, measles and pneumonia. The doctor prescribed medicines and advised her to consume nutritious food for her TB treatment.
But, Z’s condition has only deteriorated. The medicines, combined with poor nutrition has led to what is called peripheral neuropathy, a condition in which the nerves are affected, compromising the relay of information from different parts of the body.
Z can no longer walk.
“I wonder whether my lifelong battle against health problems will ever end,” Z said, her voice a whisper, mirroring anger and hope.
Ni-kshay 1.0: Marred By Problems
As progress against TB stalls, the union government has floated different names and versions for programmes meant to combat TB.
In 2018, the Ni-kshay Poshan Yojana (subsequently dubbed Ni-kshay 1.0) belatedly recognised the connection between nutrition and TB. Ni means no in Sanskrit and kshay means TB in Hindi. This scheme promises Rs 500 per month for “appropriate and nourishing food” supplements to TB patients, paid directly into their bank accounts.
But the implementation is marred with problems.
A 2020 study in Uttar Pradesh found that of the 83 beneficiaries in the study, only 20% had received the first instalment after two months of efforts to be paid: 41.2% of those who got their money reported difficulties in getting that money; while nearly 70% of could withdraw money from the bank account of the patient, the rest of them relied on the help of healthcare workers (ASHA) or family members.
There have been several reports (here and here) of beneficiaries not receiving the money for months.
R* (73), a TB patient living in Birai, a village 50 km north-east of Jodhpur, told us she received the Ni-kshay payment of Rs 500 meant for her nutritional needs while recovering from TB. But she could only get cereals, pulses and a few vegetables in her village.
If R were to go buy more nutritious food, she would have to spend at least Rs 2,000 every week to travel back and forth to Jodhpur city to reach larger grocery markets and TB medicines that are not otherwise available in her village primary healthcare centre. There is little public transport, so she relies on private vehicles.
The Confusion Plaguing Ni-kshay 2.0
While Nikshay 1.0 was stumbling along, the President announced the Ni-Kshay Mitra scheme.
By 21 September 2022, 965,589 people consented to be mitras (literally, friends) or donors. They have supposedly been matched to nearly 1.35 million TB patients registered on the portal. That is 32% of India’s estimated 4.1 million TB patients.
One of the major challenges is that it is mandatory for TB patients to be registered on the online portal. Given the state of inequalities affecting digital connectivity, this is a classic case of the inverse care law propounded by a British doctor Tudor Hart in 1971.
“The availability of good medical care tends to vary inversely with the need for it in the population served, to the extent that health care becomes a commodity it becomes distributed just like champagne,” wrote Tudor. “That is, rich people get lots of it. Poor people don’t get any of it."
Patients registering for Ni-Kshay 2.0 assistance must provide a valid mobile number, and address. This is difficult, our interviews revealed, not just because of the stigma and discrimination related to TB but large-scale migration (about 450 million Indians are internal migrants) and barriers to what the government calls Digital India: network issues and social norms of patriarchy that ensure India has one of the world’s largest gender gaps in mobile-phone access.
No Way To Send Help Where It Is Needed
The other challenge is the voluntary nature of Ni-kshay Mitra. The mitras can choose where in India they want to “adopt” and help a patient, which includes nutritional, diagnostic, and occupational assistance.
There is no way of measuring the efficiency of the mitra’s assistance or ensuring that mitras address all three aspects—nutritional, diagnostic and occupational. There is no audit process put in place that studies what might be the effects of a mitra not choosing an area that might most need assistance.
For instance, in Maharashtra, a state with the third-highest number of India’s TB cases, with nearly 1.48 million registered patients, only 18% had been adopted by mitras until October, the Indian Express reported in October 2022. The remaining 82% of the registered patients in Maharashtra have no mitras: the same for unregistered and undetected patients.
“There aren’t as many takers from the community as we had expected,” an official from the Maharashtra state health department was quoted by the Express as saying. “As it is a voluntary programme, we can’t force anyone for this.”
Similarly, in Mizoram where the state health minister said that the state government was hopeful of “achieving TB Elimination by 2025 in the state of Mizoram”, only 22 mitras have come forward to adopt and donate under Ni-Kshay 2.0.
How Healthcare Systems fail TB Patients in India
The National TB Prevalence Survey in India (2019-21) report, released in March 2022, stated that 64% of cases do not even seek healthcare.
The prevalence to notification ratio of India’s TB cases was 2.84: which means that for every one TB patient seeking formal care, 2.84 are unrecognised and unregistered.
Our case studies suggest that two of the primary reasons for TB patients not seeking healthcare are the high out-of-pocket-expenditure (OOPE) in private healthcare systems and the dilapidated state of public healthcare systems.
When P and A needed post-treatment assessment after their initial six- to nine-month drug course to determine the best way forward for their treatment, they went to a public hospital in M-East ward, home to slums with Mumbai’s lowest human-development indices.
They had been trying to get their throat and lung X-ray reports for three weeks. The only radiographic machine in the hospital was not working.
The girls had been having side-effects to TB drugs, which is not an uncommon phenomenon, including stomach ulcers and nausea. But they had been running from pillar to post trying to figure out what their next course of treatment should be.
Ni-Kshay Mitra: Govt Role Passes To Donors
The Ni-Kshay 2.0 programme of relying on mitras largesse and the ability and willingness of patients to register appears to allow the government to escape accountability.
According to the India TB report 2020 released by the ministry of health and family welfare, the budget estimates for TB elimination increased by four times (420%) between 2015-2020. In 2021, the TB budget increased by another 6.9%.
However, according to the 2022 Global TB Report released by the WHO, the interim estimated number of deaths due to TB in India also rose by 10%.
The disharmony between increase in budgets and increase in TB cases and deaths could be attributed to ineffective utilisation of the funds.
The India TB Report 2022 shows that only 14% of the 2021-22 estimated budget for the National TB Elimination Programme was released to states and only 48.3% was spent until March 2022. In 2019, the Joint Monitoring Mission Report also showed that only 43% of the 2019-20 budget had been released to ‘high focus states’, such as Uttar Pradesh and Bihar.
The Ni-kshay Mitra programme is supposed to provide each patient a nutrition basket of Rs 1,500 per month or Rs 18,000 per year. To cover expenses of even the 4.1 million TB patients registered with the government—ignoring the fact that 64% do not even get notified—Rs 7,380 crore would be required.
Why Rs 7,380 Cr Is Not Very Much
Calculations by the authors show that Rs 7,380 crore is 0.03% of the nearly 2.2 lakh crores of annual revenue foregone from corporate tax, custom duties, in just 2022 alone, leading to a combined Rs 17.02 lakh crore in the six years between 2013-19.
The authors also found that the total government health expenditure (GHE) in the same period was Rs 10.92 lakh crore, still just 64% of corporate revenues foregone.
According to the World Bank, India spends roughly Rs 12 ($0.15) per person per day for their health, compared to 20 times more or Rs 241 ($3) in Brazil and 13 times more or 161 ($2) in China.
As a result, Indians rely on out-of-pocket expenditure (OOPE) for health services. The average Indian spends 48.21% of her income on health, one of the highest ratios in the world.
In 2022, a WHO report estimated that this high OOPE on health is impoverishing about 55 million Indians annually, with over 17% households incurring “catastrophic” levels of health expenditures.
Structural Solutions to TB Elimination
While India’s National Strategic Plan for Tuberculosis Elimination relies on four strategic pillars of “Detect–Treat–Prevent–Build” (DTPB) as the way forward to eliminate TB, studies have shown that a comprehensive programme to improve income, nutrition and living conditions go a long way in bringing down TB cases.
This would require addressing the unemployment crisis, currently at an all-time high. Without income security and employment, people will be forced to migrate to urban settlements and live in poor, overcrowded settlements, hotbeds for TB transmission. Such factors could lead to epidemics, such as the spread of multidrug-resistant TB in Mumbai.
Studies have also recommended that a universal public distribution system (PDS) and universal health coverage may be more beneficial for TB treatment and support instead of depending on individual donors.
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(*Names changed to ensure anonymity)
(Puja Solanki, Sanchita Khebade, Twinkle Pawar, and Zakia Qureshi are students from Azim Premji University, Bengaluru. Sweta Dash is an independent journalist. Prasanna Saligram is with the Jan Swasthya Abhiyan or People’s Health Movement, Karnataka. Views are personal.)