A decade of building India’s TB Champion movement

In early 2017, at a workshop in New Delhi, Cedric Fernandes, a tuberculosis (TB) survivor and advocate from Maharashtra said to a room full of other TB survivors, “It has been very lonely having this disease. I am fed up with the loneliness and I hope all of you are too.” Addressing the organising team at the workshop, he gently admonished us: “I am so glad that someone is finally bringing us together but what took so long?”

India diagnoses and treats over 25 lakh people with TB every year, which means there are hundreds of thousands of individuals such as Cedric, who are coming to terms with the disease and fighting to overcome it. Their path, from diagnosis to cure, is often fraught with challenges in an ecosystem where stigma and social exclusion continue to thrive within communities. TB remains one of the most stigmatised illnesses in both urban and rural India; stigma and discrimination uniquely impact women, men, transgender communities, children and adolescents, the elderly and other socially vulnerable groups.

Challenging the belief

One of the early criticisms of the global TB response was that it remained stubbornly biomedical, focusing solely on clinical interventions whilst excluding communities and devaluing lived experience. Back in 2016, when we first began to imagine and build our wish list for how TB-affected communities — people with TB, TB survivors and their families — could play a greater role, there were many sceptics. Most of all, we were told that TB survivors, unlike people living with HIV, would want to move on with their lives once they had completed treatment, and would not be interested in becoming peer supporters or advocates. Ten years later, the evolution of the TB Champion movement in India has firmly dispelled this notion. TB Champions are survivors who are passionate, motivated and committed individuals, firm in their conviction that they have an important role to play in India’s response to TB.

India’s National TB Elimination Programme (NTEP) provides access to high-quality free diagnostics and treatment. Over the last few years, diagnosis and case-finding have accelerated, treatment outcomes have steadily improved, which means more people are being cured and mortality has reduced, with fewer people dying of TB. In the last decade, newer strategies — Artificial Intelligence (AI)-enabled screening, active case-finding within communities, shorter and less toxic treatment regimens, expanded nutrition support, differentiated care approaches — have been adopted. But even the most robust health system cannot achieve elimination of any disease by itself, without active community participation and leadership. This is where TB Champions are uniquely poised to draw on their own personal experiences of TB to be powerful communicators and advocates for changes.

‘Empower, support, educate’

In the early years of working with TB survivors, our focus was on developing the ‘Survivor to Champion’ training curriculum, which has since been formally adopted by the National Tuberculosis Elimination Programme (NTEP). Based on feedback from our first few groups of TB Champions, the priority then shifted to designing and implementing care models with varied roles for TB Champions — providing peer support, educating communities, advocating with local influencers and decision-makers, community-led feedback and monitoring, and finding local solutions, often by mobilising local resources. Simultaneously, we developed advanced training programmes to strengthen the capacity of TB Champions on person-centred care, gender, TB and disability, leadership training, communications skilling and much more. We continue to consider this as work-in-progress, with recent efforts focusing on understanding the role of TB Champions in supporting people with drug-resistant TB. At every step along the way, we have been guided by feedback from TB Champions themselves and their honest assessments of where they have been successful, or not.

Over the years, the involvement of TB Champions has reaffirmed a conviction that we have held from our inception — that a person with TB needs emotional support and motivation to get them through the treatment period, as much as they need high-quality clinical care. TB Champion-led peer counselling, through both one-to-one communication and support groups, have helped to improve treatment literacy and empowered people with TB with the knowledge they need. TB Champions have built strong personal bonds with people with TB, helping them understand what to expect during treatment, acting as sounding boards and patiently answering questions, a time investment beyond the scope of our overburdened health system. We have found a greater level of confidence and comfort among people with TB who have been supported by TB Champions and a significant reduction in self-stigmatisation.

Even today, myths and misconceptions about TB persist. TB Champions have played a critical role in dispelling these and in improving knowledge of TB, the symptoms of the disease and where to seek care. They literally reach the last mile through regular community meetings, where they talk about the disease, share their own stories and reassure people that TB is a treatable and curable disease. This has been a powerful anti-stigma strategy, enabling people to come forward to seek diagnosis and treatment without fear of stigma and thereby improving overall health-seeking behaviour. We saw the expanded impact of this during the COVID-19 pandemic, when TB Champions became trusted sources of information for their communities on COVID-appropriate behaviours.

Building networks, looking ahead

In addition, over the last decade, TB Champions in several States have come together to form survivor-led networks. These collective entities are naturally designed to be a powerful bridge between those seeking care and those providing services, especially among social vulnerable groups. Importantly, networks have become a source of strength for TB survivors, many of whom continue to experience the physical, social and economic toll of the disease even after being cured. However, the long-term future and sustainability of networks remains uncertain, given that they are dependent on external resources for funding. The next challenge is to test and build self-sustaining socio-economic models for survivor-led networks.

Over the past 10 years, we have been humbled by the trust thousands of TB Champions from across the country have placed in us. They have travelled long distances to attend our workshops, sharing their TB journeys and stories, their pain and successes; they have posed for photographs and recorded powerful video messages, hoping to inspire others, telling their stories again and again; and they have shared their vision for how they can contribute towards a collective movement for a TB-free India. They have become empowered local leaders, unafraid to use the TB Champion moniker to refer to themselves. They remain staunchly committed to working with their communities — supporting people with TB and their families, talking about stigma, meeting their panchayat leaders — and doing all of this for one simple, powerful reason — ‘so that no one else should suffer like I did’.

Dr. Nalini Krishnan is Co-Founder and Executive Secretary of the Resource Group for Education and Advocacy for Community Health (REACH), a non-profit organisation working on tuberculosis (TB) for 27 years and a pioneer of the TB Survivor to Champion model. Anupama Srinivasan is Deputy Director, Resource Group for Education and Advocacy for Community Health (REACH)

Published – March 24, 2026 12:08 am IST