When Kanchan Kumari, a tuberculosis (TB) survivor from Muzaffarpur in Bihar first spoke to Sunita*, a resident of the same district who was on TB treatment, all seemed well. By the time they spoke next a few weeks later, just after the brutal second wave of COVID-19, Sunita had lost her mother, was being ill-treated by her husband’s family, had nearly run out of medicines and was emotionally distraught. Over the next few days, Kanchan counselled Sunita, spoke to her family, supported her to travel to her maternal home, personally spoke to the health facility staff and arranged for Sunita to collect the medicines she needed. Without Kanchan’s support, Sunita is sure that she would have given up her treatment.
Over 25 lakh people are diagnosed with TB in India every year. For many of them, the TB experience is a lonely one. What is often missing for a person with TB is an emotional touchpoint, a friend and confidant who will patiently answer their questions and provide them with reassurance, someone who will empathise with their TB experience.
This felt need is now being met by trained TB survivors, who are equipped with the knowledge and skills they require to provide essential information and emotional support to people with TB and their families.
For too long, the response to TB has been primarily a biomedical one, driven by the need to manage clinical aspects of the disease. As a result, we have not paid enough attention to the psychosocial and emotional needs of people with TB. When a person is diagnosed with TB, their first reaction is inevitably shock and anxiety, fuelled by the fear of stigma and discrimination.
Globally, there is substantial evidence on the impact of engaging affected communities — people living with HIV for instance, who have steered global efforts on HIV and AIDS. Advocates from among people living with mental illnesses and disabilities have helped change attitudes and shape person-centred approaches. Other examples come from cancer support groups which provide a sense of community and solidarity. For those affected by a disease, survivors offer tangible hope that they too can be cured and can go on to lead productive, meaningful lives.
Making progress
In India, the engagement of TB-affected communities was sporadic until some years ago, with a few active TB advocates who shared their personal experiences on various platforms. In general, there was an assumption that TB survivors would not be willing or interested to participate in the TB response, given the short-lived nature of the disease.
However, active outreach to TB survivors has proven otherwise: while not every TB survivor is interested in working with their communities, a significant number are, all driven by a simple but powerful motivating factor — “I do not want anyone else to suffer like I did.” In 2016, we began to work systematically with TB survivors, with support from the United States Agency for International Development. By 2019, working closely with the National TB Elimination Programme (NTEP), we had built the capacity of over 300 TB survivors and empowered them to become Champions. The training was followed by a six-month immersion programme, designed to help new Champions interact with the health system and people affected by TB, and understand the ground realities.
During this period, we also encouraged TB Champions to come together to form survivor-led networks — today, there are several networks at the national and State levels, many formally registered. When Abhinandan, a young TB Champion from TB Mukt Vahini (TMV) in Bihar, was struggling to convince a woman with TB to continue her treatment, he turned to Abhishek, a founding member of TMV for guidance. With the latter’s help, Abhinandan was able to convince the young woman to not give up on treatment. Recently, a delegation from the TB Mukt Chhattisgarh Foundation, the State’s survivor-led network, met the State Health Minister to advocate for increased nutritional support for people with TB.
From a TB Champion’s perspective, it was evident that their deepest satisfaction came from talking to a person with TB and helping them cope with their treatment. In many ways, the tangible nature of peer support appealed to them, grounded as it was in personal and direct interactions. As their TB Champion identities became well established in their communities, people began to approach them with for health issues beyond TB — this was most evident during the pandemic.
Beyond the impact on TB, TB Champions reported significant personal empowerment including greater confidence, better public speaking skills, increased mobility, digital literacy and financial independence. They also experienced an enhanced recognition within their communities and wear the TB Champion label proudly.
At the policy level, the need for engaging TB Champions is now well recognised across India, with formal acknowledgement by the TB programme in the National Strategic Plan and the recent Community Engagement guidelines. The NTEP is currently in the process of scaling up training of TB Champions across India, with the goal of having at least two in every block, — over 15,000 Champions in the country.
Building on this national-level mandate, States must embrace the engagement of TB survivors. States can formally scale up the training and engagement of TB Champions through increased investment via both annual Programme Implementation Plans and State funds. At the district and sub-district levels, mechanisms to work in close coordination with trained TB Champions must be established and sustained. Continued investment in refresher training and capacity-building for TB Champions is critical. They must also be adequately compensated for their time, commensurate with the level of effort we expect from them.
From the perspective of a person with TB, the peer support provided by TB Champions has helped meet their emotional needs and improve treatment literacy. Their relationships with TB Champions are often deeply personal, as we saw with Kanchan and Sunita. Access to peer support can not only improve treatment outcomes for people with TB but also motivate them to become TB Champions themselves, thereby strengthening community participation in TB.
*Name changed for privacy
(The authors work at REACH, a non-profit organisation based in Chennai and working on tuberculosis for over two decades)
anupama@reachindia.org.in
