Government and non-governmental organisations in Assam are attempting to accelerate the State’s TB eradication programme through community engagement efforts.

“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.