“My husband is a buddhu [illiterate],” 41-year-old Anita Bodo says through her tears. When she was diagnosed with tuberculosis in early 2021, her husband was thrown out of his job and he in turn nearly abandoned her. Such is the stigma of TB among the tribal people of Baksa district in north-western Assam that a patient and even his family face exclusion and loss of livelihood.
Baksa, one of the four districts of the Bodoland Territorial Autonomous District (since renamed as the Bodoland Territorial Region) formed in 2003 after the signing of the historic Bodoland Territorial Council accord, is home to a diverse group of people including Bodos, Nepalis, Bengalis, Adivasis working in tea gardens, Assamese, and Rajbongshis. The majority of them are poor and work as daily wage labourers, making them one of the most vulnerable populations.
As in other rural parts of the country, the lack of awareness and fear of contagion leads to the isolation of patients in their homes. Coughing up blood terrifies communities that are all too familiar with the symptoms of the illness. Most people are simply unaware that the disease ceases to be infectious after two weeks of treatment. Though there have not been many deaths, the stigma surrounding TB is enormous.
Social disease
As a result, tuberculosis has become a social disease. Apart from the physical seclusion of patients, families often keep separate utensils for them. Women are subjected to more stigma and discrimination than men. Anita battled the disease for a year with the help of her children and now wants to help others who are suffering from the social and physical impacts of TB.
When Frontline met her, she had cycled several kilometres from her village in Geruapara to the Adalbari State Dispensary to attend a tuberculosis care and support group meeting. She was joined by Bhabananda Das, 42, who lost his job after being diagnosed with TB. In his village of Athiyabari, seven persons contracted it simultaneously. “Because of the stigma people hid the fact that they had contracted the disease, which led to its rapid spread,” he said. According to the National TB Prevalence Survey, 2019-2021, as many as 312 per 100,000 population in India is afflicted with TB. In Assam, the figures are 217 per 100,000 population. “Our goal is to reduce the TB infection rate to 44 per lakh population by 2025 under the ongoing NTEP [National Tuberculosis Elimination Programme],” says Dr Avijit Basu, Joint Director and State TB Officer, Department of Health Services, Government of Assam.
The NTEP aims to eradicate TB in India by 2025. The Sustainable Development Goals of the United Nations call for the elimination of the global TB epidemic by 2035.
According to the WHO, India accounts for roughly one-fourth of the world’s TB burden. Close to 50,000 people die of the disease every year in India, where at the same time about a million cases are missed every year, says Dr Palash Talukdar, WHO Consultant, NTEP, Assam. Active testing is a key challenge in detecting TB. Community engagement at the grassroots level is one of the ways the government and NGOs are trying to accelerate the process of TB eradication. In order to reach out to people in their communities, TB champions such as Anita Bodo and Bhabananda Das use tools provided by Lakhya Jyoti Bhuyan, Prasenjit Das, and Dinesh Talukdar, foot soldiers of the Karnataka Health Promotion Trust (KHPT), an NGO that works on TB, adolescent health, maternal neonatal and child health, and primary healthcare. They identify a TB Buddy, who can be a caregiver or community member to provide support during each stage of the treatment. One of their objectives is to reduce the psychosocial impact of TB on patients by effecting behavioural changes.
Arjun Narzary, who works with the Inland Water Transport department in Guwahati, was fortunate to have a government job. He was granted medical leave for the period of treatment and has rejoined duty.
E-rickshaw driver Phukan Basumatary has made it his life’s mission to spread awareness about the disease. He travels from village to village, blaring instructional audio content about TB from his vehicle. He has defied the stigma of remaining silent about the disease by shouting it out from his rickshaw.
Controlling it
KHPT’s Breaking the Barriers project (2020-2024), supported by USAID, is in line with India’s National Strategic Plan for TB elimination. “Elimination does not mean there will be zero cases of TB but that the disease will be under control. By 2025, our aim is to minimise the TB caseload,” says Dr Avijit Basu.
In Baramchari, a picturesque little village in Baksa, dozens of women finish their daily chores to settle under a canopy of trees to discuss how to combat the monster of TB. Members of a self-help group, they say that detection has gone up ever since their group got actively engaged with TB awareness. “We have so far detected four cases of TB in our villages. We make sure that there is no ostracisation of patients. We have more TB cases because of a lack of testing. People here work hard as daily wage labourers and can seldom afford nutritious food. And then they also drink the local liquor. A combination of these factors compromises their immunity and they get TB,” says Reena Rabha of Lokpala village, a leader of the group.
Apart from the tribal community of Baksa, the tea garden workers of Dibrugarh, mining populations, industrial workers, and urban migrants are among the most vulnerable groups. Urban migrants are vulnerable primarily because of their unhygienic living conditions, tobacco use, and a lack of proper nutrition. Suman Phukan, a community coordinator with the KHPT, works with such groups in Guwahati and the Kamrup Metropolitan district. She is the first point of contact for the Bihari and Muslim migrant labourers who live in the Sitlabari Railway Colony slum.
She tells the story of Sunil Peshwan, who was diagnosed with pulmonary TB for the third time at the age of 28. After his wife left him, Sunil had no one to look after him and he discontinued his medication. Members of the local Gajraj club volunteered to look after him, but when it became too much for them, they admitted him to a hospital. Sunil ran away from there.
When the club members tried to get re-admit him, the hospital authorities refused, citing the lack of a primary care giver. When Suman learned of Sunil’s deteriorating condition, she had him admitted to a Missionaries of Charity home, which had a TB unit on its premises. When Frontline met Sunil on the day of his release from the centre, he had lost a lot of weight, but had recovered and was willing to take care of himself.
Another vulnerable area identified by the KHPT is the localities around the famous Kamakhya temple in Guwahati. Members of two self-help groups, Muktinath and Kuhipat, have prioritised TB detection in this area.
Only time will tell whether these efforts by communities, governments and NGOs will be successful in eliminating TB. In her landmark book Phantom Plague: How Tuberculosis Shaped History, Vidya Krishnan sounds a word of caution. Narrating the history of TB from the days of the vampire panics that led to Bram Stoker’s Gothic horror novel Dracula to the discovery of modern medicine and penicillin, Vidya asks readers to be cautious about reducing the stories of patients to mere numbers and targets. She emphasises the links between social inequalities and disease and how sometimes urban building laws can act as institutionalised incubators of deadly drug-resistant bacteria.
She writes, “No amount of aid is going to save us from ever-evolving pathogens unless we fix the superstructures of global health at their structural root. TB and humans have evolved hand in hand. During the course of this relationship, the bacteria has learned from us more than we have from it. One bad decision at a time, the global TB pandemic has been socially constructed by us—humans who are reliably small-minded, casteist, and racist every time we face a pathogen that is highly unpredictable, mutating and thriving. The fundamental question here is not whether the pathogen will prevail. It is whether individual decency—that encourages us to fight for the right to health and the right to dignity for the poor and vulnerable—will prevail. There lies our salvation. No one is safe until everyone is.”
