Involving community means working with local structures that people are familiar with, like youth groups, Panchayati Raj Institutes and self-help groups, says SHALINI SAKSENA’

Despite being curable, tuberculosis continues to affect and cause the death of millions across the world. India contributes to over a quarter of the global TB burden and has the highest TB-related mortality in the world. We have set the goal of TB elimination by 2025 and early intervention and adherence is crucial for TB cure. Over the years, there has been considerable progress in addressing the disease and related challenges, issues like the stigma associated with the disease, inequality of coverage, lack of access or awareness, and the high cost of private care continue.

The people do not declare their condition or seek treatment most times out of fear, and thus, it leads to a growing number of cases. The challenge of addressing the disease has only worsened with the COVID-19 pandemic and subsequent lockdowns. In 2020, there were 1812526 total cases identified, while in 2019 a total of 2400540 cases were screened, translating to a 27 per cent decrease.

Now, more than ever, the role of community participation has become indispensable in addressing the growing challenge of tuberculosis as the success of any public health intervention heavily depends on the involvement of the people. Incorporating local communities and their structures would allow us to reach groups that were not accessible before as they hold experience working with the people, have common backgrounds, and a comprehensive understanding of ground realities.

Involving the community means working with the local structures that people are familiar with, like youth groups, Panchayati Raj Institutions, self-help groups, and TB champions, among others. Working with them allows credibility to the information, provision of psychological support, and dispelling of myths and misinformation related to the disease.

Government or civil society organisation should conduct capacity building to ensure active involvement by ensuring proper information dissemination, developing linkages to health service schemes and establishing supportive monitoring systems. Karnataka Health Promotion Trust (KHPT) has been working continuously with community structures to build their capacity to ensure awareness regarding tuberculosis and designs patient-centric innovations.

The active participation of the community would facilitate bringing the services to people’s homes, reducing the cost of care, help in the identification of cases that are usually missed and get diagnosed more quickly, thus developing better quality care. It also leads to the improvement of treatment adherence, health-seeking behavior and allows those affected by the disease to make decisions about the kind of care that suits them the best. This is considered the best model for self-reliance. Using a community model allows for an integrated approach and delivers innovative solutions to a larger group to ensure deeper engagement.

Many stories are testament to the power that community structures hold in addressing public health crises like TB by providing support to those who need it most. One such is Nagaraj’s story from Channasandra village, Bangalore. A daily-wage worker with deteriorating weight and other TB symptoms, he was identified by the members of a self-help group, Sri Sharada Swasahaya Sangha, working on TB awareness. They helped him get screened, and it was found that he was TB-positive.

Due to a lack of finances, he could not be admitted to Rajiv Gandhi Hospital, so he reached out to the Sangha members. The Sangha members counselled Nagaraj’s friends about the disease to raise awareness and dispel any myths to ensure support.

To continue their support, the members monitor his health routinely and provide support for emergencies. We must also remember that the impact on mental health and gendered social factors must be accounted for any effective intervention.

To end the epidemic, the voices of all people affected by TB must form the core of intervention to ensure people-centered and integrated care. While policies and schemes may be developed, the power of people is essential to bring change.