Microscope image of a Mycobacterium, a member of the family that causes tuberculosis. Photo: NIAID/Wikimedia Commons
Uttar Pradesh: Three years have passed since the first wave of the COVID-19 pandemic and the ensuing lockdown brought India to a standstill in March 2020, crumbling its already overstretched healthcare services. It was around this time – at the height of the stringent lockdown – that Sunita, 37, was struggling to procure medicines for tuberculosis (TB) for her father-in-law Bhullan. Though the other family members were fleetingly optimistic, Sunita knew it was a lost battle. She had lost her husband Jagdish to the same disease not long ago. But in the pre-pandemic era, she had relatively better access to medicines and healthcare centres.
The pandemic, combined with poverty, meant that Sunita was resigned to her father-in-law’s fate. The family watched Bhullan succumb to the infectious disease.
Sunita tended to Bhullan in his last days, just like she had to her husband – feeding him, washing his clothes, and cleaning him. She is left with three young children to support, an inconsistent income from work days generated under the Mahatma Gandhi National Rural Employment Guarantee Act, and the grief of losing Jagdish and Bhullan to TB — one of the deadliest infectious diseases in the world.
Globally, India bears the highest TB burden followed by China, Indonesia, the Philippines, Pakistan, Nigeria, Bangladesh and South Africa. Together, these nations comprise two-thirds of the total cases. Across the globe, 10.6 million people were affected by TB in 2021, according to the WHO. When it comes to the mortality rate of people diagnosed with TB, 82% of global TB deaths among HIV-negative people occurred in the WHO’s African and South-East Asia regions. India alone accounted for 36% of these deaths.
The COVID-19 pandemic and the subsequent lockdowns and disruption of health services only made things worse. The WHO’s 2022 report shows COVID-19 has set back the progress made in TB by several years around the world. TB incidence rate rose by 3.6% between 2020 and 2021, reversing declines of about 2% per year in the past two decades. In 2021, WHO director-general Dr Tedros Adhanom Ghebreyesus described the rise in TB cases as ‘alarming’ and highlighted the urgent need for investments in order to shrink the gaps in ‘diagnosis, treatment and care’ for those affected by this otherwise preventable and treatable disease.
India saw an increase in deaths by 13% in 2020 as compared to 2019. Estimations for the coming years present a rather grim picture. While the WHO feared the number of deaths would go up further between 2021 to 2023, a collaborative report by the Stop TB partnership, Imperial College and Johns Hopkins University estimated that India is likely to see an additional 40,685 deaths between 2020 and 2025.
Madhukar Pai, associate director, McGill International TB Center, says TB remains an under-invested area because it mostly affects poor people in low and middle-income countries (LMICs). “That is why we are still using a century-old BCG vaccine. High-burden countries need to step up and invest more in TB, and that requires political will and leadership. We need greater community-led advocacy to convince leaders about the importance of ending TB,” he adds.
These are also the countries that have borne the brunt of the COVID-19 pandemic, have had less access to COVID vaccines, tests and anti-viral medicines, and have also had the highest excess deaths, explains Pai.
Tuberculosis is a bacterial infection which many people carry latently without any symptoms. When it becomes active, it attacks the lungs. In some cases, it can also affect other parts of the body like the kidneys, spine, brain, bladder and the reproductive system. Passed through germs, TB is a slow-moving disease and it sometimes takes months for symptoms to start cropping up. In India, the poor bear a disproportionate burden of TB with poverty and malnutrition being crucial social determinants of this infection.
Dr Anurag Bhargava, professor of medicine at Yenepoya Medical College and a TB researcher, points out there is a need to look at the social determinants in order to understand how tuberculosis remains a ‘classic social disease with a medical aspect’. “Unless we address the primary determinants of population health like nutrition, and the problems of access and quality of primary care services, we will not be able to decrease the burden of new cases of TB or TB deaths in India,” he says.
As India grapples to contain the TB crisis, its hunger status has been described as serious by the Global Hunger Index, which ranked the country 101 among 116 countries.
According to the National Family Health Survey – 5 data, Uttar Pradesh has 39.7% of children suffering from stunting, 17.3% of children from wasting, and 32.1% of underweight children below the age of five years. This country’s average for the corresponding categories during this time period was 35.5%, 19.3%, and 7.7% respectively.
Structural barriers make treatment difficult for patients
The ground reporting in rural Uttar Pradesh shows how the pandemic made it almost impossible to access TB treatment while negotiating an already crumbling healthcare system. A halt in livelihood opportunities, sparse access to transport to travel to primary healthcare centres amidst repeated lockdowns, services being redirected to attend to COVID patients, and mistrust in the public healthcare system meant people heavily relied on quacks to get medicines.
Left with no other option but to earn a livelihood in their village Chittampur in Uttar Pradesh’s Mirzapur district, the father-son duo of Bhullan and Jagdish crushed stones in nearby quarry mines. Exposure to silica makes people more susceptible to TB. They were no exceptions, and both of them died less than two years apart.
Sandhya Mishra, founder of the Uttar Pradesh-based local non-profit Shikhar Prashikhan Sansthan, and who has worked on TB for over two decades in Mirzapur district, says despite the high prevalence of TB among quarry workers, the government has not focussed adequately on this vulnerable population. “In cases where they have the occupational disease of silicosis, which makes them more susceptible to TB. But there is barely any documentation,” says Mishra.
In the initial days, Jagdish and Bhullan suffered from similar symptoms – cough and persistent fever. As daily wage earners, they could not afford to miss work. The only option was to ignore the symptoms. It was not until two months later that they realised something was amiss with their health. With many neighbours having approached the private healthcare system, they did the same. An X-ray confirmed it was TB. In both cases, the family floundered in the dark, battling the high treatment cost at private healthcare centres and eventually sold off one-fourth of the 1.3-acre land they owned.
“We got Jagdish treated for four or five years. We got medicines from both private and government centres. He was also given injections which brought him temporary relief,” says Sunita. But the family’s biggest regret is they could not procure any medicines for Bhullan during the lockdowns.
For 40-year-old Dhanpatti Devi and her children, there was no option but to take her husband Vijay Bahadur, 45, to a quack nearby in Chittampur village before he succumbed to TB at their home in December 2021. If not for the pandemic, perhaps things would be different, she thinks aloud. Vijay suffered from TB for over a decade and in that time, the family knocked on all doors for relief – private healthcare, government facilities, quacks. When they felt the treatment gave Vijay momentary relief, they stuck to it. On other occasions, they moved on.
“There was no transport available during the lockdown to take him to government facilities. Also, tempos would overcharge during that time,” says Devi. Her son adds that the police would chase people with sticks to enforce curfews, making it impossible to access healthcare.
Despite their efforts, they knew – the inevitable had arrived. They sat by his side at their home and watched him writhe in pain during his last moments. “Where could we take him at that time of the night?”
Dr Bhargava explains that in rural areas, people typically face geographic, and economic barriers in accessing healthcare. The primary care centres are located at a distance, are understaffed and lack diagnostic service. “If primary care services, including diagnostics services, were more accessible in rural areas, patients would be diagnosed early and both the patient and the community would benefit from better outcomes and reduced transmission.”
These problems are compounded by poverty, which means poorer levels of nutrition and a deficient healthcare system. “The challenges got amplified during the pandemic with families facing multiple barriers. Suspected TB cases could not get an early diagnosis, and mortality went up,” he adds.
“During the pandemic’s peak, efforts were made to ensure that the targeted approach to diagnose and treat TB is uninterrupted. But hospital staff was repurposed. And that was intentional because it was the need of the hour to make sure that COVID is handled,” says Dr Raghuram Rao, assistant director general (TB), central TB division, Ministry of Health and Family Welfare (MoHFW). But eventually, the infrastructure for TB was scaled up as well, he adds.
Tackling multi-drug-resistant TB (MDR-TB) remains a global challenge, and India is no exception. It could not be independently verified if the interviewees’ relatives died of MDR-TB in rural UP as all the families did away with all the documents, medicines and X-ray reports after the deaths of the patients. But most of the families described how they quickly moved on to different treatment regimes if one line did not give immediate relief. Many of them also arbitrarily stopped taking drugs when they felt slightly better – another leading factor giving rise to drug-resistant TB.
Despite the existence of DOTS (Directly Observed Therapy Short-Course), monitoring and surveillance remain poor at the grassroots with most families saying ASHA workers never visited them to raise awareness on TB or to supervise their medicine intake at the height of the pandemic. The health volunteers were, however, on the frontlines of battling the pandemic and held several protests for being overburdened and overworked.
Once the COVID-19 situation improved, things only marginally improved, according to some families.
Dr Zarir F. Udwadia, a Mumbai-based physician who has extensively worked on MDR-TB, says, “The main issue about tuberculosis remains lack of access to drugs. “Bedaquiline is much easier to access now than it was about five years ago. The first line of treatment should be combined with other new drugs. Counselling about the side effects of drugs in an MDR regime remains a challenge. This may be compounded in the case of rural patients. When patients come to us in city clinics, they are already found suffering from drug resistance,” he says.
With a 41% decline in reporting TB cases to the official authorities in India in 2020, experts question the feasibility of India’s promised target of eliminating TB by 2025, ahead of the target set by the United Nations’ Sustainable Development Goals (SDGs). Last year, the Indian government had planned year-long activities ahead of Prime Minister Narendra Modi’s birthday on September 17, including urging citizens to adopt TB patients with their consent for a ‘TB-free’ India. But unless the government strives to address the social determinants of poverty, and nutrition, eliminating TB will remain a distant reality, experts say.
Living with tuberculosis
In Mirzapur’s Purainiya village, neighbours 60-year-old Ramji, and 65-year-old Badau – both stone crushers at quarries – consider themselves lucky to be able to access treatment after being diagnosed with TB in 2021.
The nearest government facility is around 25 km from their home. To get there for treatment or to pick up medicines, they have to travel in multiple tempos or borrow motorcycles from others. Badau stuck to his treatment at a government facility and also received the government’s direct benefit transfer of Rs 500 for the first six months – after which it abruptly stopped. Badau’s health condition does not permit him to work anymore. The only breadwinner is his 21-year-old son Anil Kumar, who teaches at a private school. “My father’s X-ray remains pending. It is difficult to take a day off on a weekday, and the government facility is closed on Sundays. My father is too weak to go alone,” says the young man.
Meanwhile, Ramji had already spent Rs 40,000 within a span of two months after his diagnosis in 2021 as he navigated the private healthcare system. While some medicines are provided free of cost at government facilities, they have to purchase a number of medicines. The government’s own report shows patients typically spend around Rs 20,000 in private hospitals, and Rs 7,500 at government facilities.
“From last May till now, I have had no income. Doctors have asked me to eat well but I cannot afford the diet they have suggested,” Ramji says.
Dr Rao from the MoHFW says the government is trying to decentralise TB care services for early identification of cases and screening, in addition to a sharp focus on the prevention of TB cases.
“The health-seeking behaviour is such that almost 70% of patients reach out to the private sector as the first point of contact. So, there is a private sector engagement strategy in place. These are interface agencies which have been appointed by the state governments which act as a bridge between the private practitioner and the government to be able to get the notifications and provide free drugs and diagnostics,” he says.
Ritwika Mitra is an independent journalist.