Power to the people: community-driven governance reforms are crucial to transform TB care in India

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TB governance must include community representatives, social scientists, labor groups, legal experts, and patients; not just doctors and bureaucrats. TB-affected communities should be given decision-making roles in programme governance; not just be used for “patient stories” or awareness campaigns

The India Innovations Summit: Pioneering Solutions to End TB was recently held on March 18 and 19, 2025 at Bharat Mandapam, New Delhi. The summit aimed to provide a platform to showcase and discuss more than 300 innovations, particularly in tuberculosis (TB) diagnostics and therapeutics. While the majority of innovations exhibited focused on these areas, a few also highlighted social innovations in TB service delivery, such as e-vouchers for TB screening, art-based approaches to address TB stigma, community radio-led TB awareness, TB specific verbal autopsy tools, engagement with chemists, AYUSH providers and rural health practitioners to reduce diagnostic delays and drug dispensing systems for people with TB (PwTB) to enhance treatment adherence.

A significant emphasis at the summit was placed on the use of AI tools in TB diagnosis and treatment. To name a few, drone-enabled sputum sample collection and transportation, AI-integrated UV-C disinfection robots, WhatsApp chatbot technology for self TB screening, AI-based cough analysis to detect TB and AI-based screening using portable handheld x-rays. The event served as a valuable opportunity to present these innovations to regulators, policymakers, National TB Elimination Programme (NTEP) officials, and global and national TB experts.



The summit was jointly organised by the Department of Health Research- Indian Council of Medical Research (DHR-ICMR) in collaboration with the Central TB Division (CTD), Ministry of Health and Family Welfare (MoH&FW). It was co-hosted by global organisations, The Union with support from the Gates Foundation. The missing piece What caught my attention at the summit was the emphasis on clinical and biomedical solutions such as new drugs, vaccines, and diagnostics as well as point of care tests, while limited attention was given to community-led governance-based innovations.

The fact that only one panel at the summit focused on this issue and even this was expert-driven rather than community-led, reinforces the power imbalance and the (bio)medical monopoly in our TB response. This raises a key question: Are we over-relying on medical advancements while underestimating the role of social determinants, policies, community engagement in TB governance processes at various levels and social accountability in ending TB in India? There is a fundamental gap in how community engagement is framed in TB care in India. Instead of just “engaging communities” in predefined ways, the system should truly empower them to lead.

Some initiatives like TB forums and TB champions exist under the NTEP, but community engagement often gets reduced to ideas of awareness generation and providing patient support for treatment completion. The problem of medical hegemony Medical hegemony dominates TB policy and healthcare leadership. The NTEP and the broader healthcare systems are largely controlled by medical experts, bureaucrats, and technical specialists, leaving little room for community voices, social scientists, or governance experts in shaping TB strategies.

This poses several constraints for people-centered TB care in India. TB is treated primarily as a clinical problem, sidelining the social, economic, and governance factors that drive the epidemic. Policies are made for people, not with them.

Affected communities and frontline workers have minimal say in shaping interventions. TB forums, patient networks, and civil society groups often play symbolic roles, rather than being given actual power to influence resource allocation, service delivery, or TB policy decisions. The fight against TB requires integration with nutrition, housing, labor rights, and social protection, but medicalised governance isolates TB from these broader systemic issues.

There are some efforts to integrate social protection measures in the NTEP: the Nikshay Poshan Yojana scheme provides ₹500 per month to persons with TB during their treatment to support their nutritional needs. However, delays in payments have been reported. Without strong community oversight, issues like stockouts of TB drugs, delays in the Nikshay Poshan Yojana payments, poor treatment quality in the public and private sectors, and human resource shortages will persist.

Infusing social accountability mechanisms that ensure transparency, citizen engagement and community-led monitoring with multi-stakeholder governance platforms at all levels are crucial in resolving the systemic challenges faced by the NTEP. What needs to change? There is a need to shift from the current, medical-only leadership to a multistakeholder TB governance model. TB governance must include community representatives, social scientists, labor groups, legal experts, and patients and not just doctors and bureaucrats.

Community leadership in the NTEP should be institutionalised. TB-affected communities should be given decision-making roles in programme governance, not just be used for “patient stories” or awareness campaigns. Communities should have a direct role in allocating resources, monitoring TB service delivery, and holding the system accountable.

TB elimination efforts must be integrated with housing, food security, workplace rights, and social welfare programmes. There should be strong legal frameworks for community oversight to ensure stronger accountability in public and private TB care. Communities/ TB champions shouldn’t be just spreading TB information: we should critically examine to see if there is an enabling environment for communities to challenge systemic failures (e.

g., dysfunctional TB forums, HR shortages, TB drug supply issues) at State and national levels. TB champions and civil societies need stronger roles beyond token participation, with clear mandates to influence governance, and the accountability structures of the NTEP.

Community-led governance innovations are just as critical as biomedical breakthroughs in the fight against TB in India. Without addressing systemic barriers such as weak accountability, inequitable healthcare access, and power imbalances, no amount of new drugs or diagnostics can fully eliminate TB in India. Democratising TB governance in India is the the need of the hour.

(Dr. Meena Putturaj is an Assistant Professor and a DBT/Wellcome Trust India Alliance Fellow at the Institute of Public Health Bengaluru [email protected]) Published - March 24, 2025 12:52 pm IST Copy link Email Facebook Twitter Telegram LinkedIn WhatsApp Reddit tuberculosis / disease prevention / India / medicine.