TB survivors speak out: ‘Social stigma is a reality even today for those with TB’ Premium

Tell us your experience with TB. How did it affect your life?

Himani: I had TB when I was in Class 12. I stopped meeting my friends ,and my family did not share my TB status with others. It was in 2018, when I first attended the TB survivor to TB Champion training, that my perspective changed.

Kailash: When I was diagnosed with TB, I was studying in school. TB impacted my studies a lot. My family underwent a lot of stress.

Sudeshwar: As someone working in the social sector, I initially thought of TB as just another disease. But things changed when my family learnt about my condition, and the social pressure at home became overwhelming. For them TB meant death.

Poongodi: I’m from a village in Vellore district of Tamil Nadu. My father is a farmer. I got married in 2011 at the age of 21. Two years later, I found out I had TB after experiencing three pregnancies, all of which ended in loss. The first two babies died at childbirth and the third was a miscarriage. When I asked about the cause of this, even the doctors couldn’t provide a clear explanation. When my husband and his family came to know that I had TB, I faced constant verbal abuse and physical harassment. I gave up my treatment and focused on reconciling with my husband as we had a love marriage and I couldn’t bear the thought of leaving him. I neglected my health. But my husband pursued divorce proceedings relentlessly. The court hearings took a significant financial toll on my family. In 2013, I was diagnosed with TB for the third time, and this time it was drug-resistant. I had to have around 80 injections. Throughout this ordeal, my father stood by me. He will always be my hero.

Today, you are known as a TB Champion. Who is a TB Champion, what do TB Champions do, and why do we need them?

Himani: A TB survivor is one who has defeated TB. A TB Champion is one who helps others fight TB. We need TB Champions in the community. The National TB Elimination Programme (NTEP) provides free diagnosis and treatment. They tell people what medicines to take, the duration of treatment, and the follow-up tests to be done. But people with TB need counselling. They need someone who can listen to them and confidentially answer their questions. Our personal stories give a lot of confidence to those who are currently seeking TB care. We also provide real-time feedback to the NTEP about the quality of TB care and services.

Kailash: As a TB Champion, we provide psychosocial support to a person with TB. When someone has TB, they feel very vulnerable and anxious. They wonder: ‘what will happen to me and my family and how will I complete such a long treatment?’ TB Champions also explain the importance of nutrition, and provide linkages to social security schemes.

Sudeshwar: I am speaking on behalf of each TB Champion. Had we known about diagnosis, the importance of early treatment initiation, and availability of free services, our TB journeys would have been much simpler and the chain of transmission could have been reduced. This is exactly why we are are collectively working towards as TB Champions in Bihar.

Poongodi: As survivors, we can offer authentic insights into the TB experience, which help educate the public.

Why did you personally want to become a TB Champion? What motivates you to do the work you do?

Himani: During my first training, I met TB survivors from different districts of Chhattisgarh and that is where I learnt about the challenges others had to face. I saw some marriages falling apart because of TB. Some women were separated from their children. Now when I work in this sector, I see a lot of people who stop TB treatment halfway because of financial hardships. I see deaths in the field because of TB. These realities motivate me to contribute my part to the fight against TB.

Sudeshwar: After I completed my treatment, I was trying to get back to my life before TB. As I met other TB survivors, I realised how much social stigma and fear there was. A few instances shook me profusely. I had visited a person on treatment in Nalanda; five days later, when I went back, he had died.

Poongodi: I’ve decided to dedicate my life to helping those affected by TB. Interestingly, when I provide support to people with TB, they often call to check in on me and my health. This outpouring of concern has only strengthened my resolve to work for the TB community. I want to make sure others don’t suffer the same emotional isolation I did.

What are some challenges that people with TB face today, and what can we do to address them?

Himani: A lot of people first go to a private health facility for seeking TB care, whereas TB diagnosis and treatment is freely available in public health facilities. This lack of knowledge or trust in the public health system is a fundamental reason for high out-of-pocket expenditure. The treatment lasts for 6-8 months and there are side effects. People from many tribal/rural areas in Chhattisgarh have to travel long distances to access services. They spend money and lose wages. This delays access to care.

Kailash: One of the major challenges is the lack of awareness and factually correct information on TB.

Poongodi: People with TB often face significant financial hardships. Despite requiring nutritious food to support their recovery during treatment, many struggle to afford it. Elderly people, in particular, face additional challenges as they may be unable to work, leaving them vulnerable and uncertain about care. Unfortunately, misconceptions and fear about TB persist in many communities. Even now, some people in my town still whisper that I have TB.

Do people with TB experience stigma or discrimination today?

Kailash: Stigma exists at the self, family, and community levels. We have seen that if a young girl has TB, then her family members do not tell anyone about it. I met a civil engineer who had completed two months of treatment but kept himself away from his family and stayed in isolation. We have a TB Champion who is a teacher in a private school. When she was diagnosed with TB, the school asked her not to come back until she was cured.

Sudeshwar: The harsh truth is that social stigma is a reality even today. Recently, a doctor in Patna called me. His household help was diagnosed with TB and he wanted to send her back to her village. There is a silence associated with TB. Whenever we do a community awareness programme, we share our phone numbers. People call up and enquire about the facilities and how to initiate diagnosis. But they don’t ask us anything during the meeting. Sometimes they stay back and talk to us alone.

Poongodi: Even today, when I eat, my father is the only one who sits with me and shares a meal. My sister, on the other hand, either eats at a distance or skips meals altogether. Two years ago, a woman in my village was diagnosed with TB and became severely ill. Her family built a small hut for her outside their home and she died soon after.

Tell us a little about how your network evolved, and what it has done so far.

Himani: We began with more than 30 people. Today there are over 400 of us in the TB Mukt Chhattisgarh Foundation network. We do a lot of advocacy work for improvement in TB care and services. For instance, we started the TB-free Bhilai campaign and launched many anti-stigma campaigns, the first of its kind in Chhattisgarh. We are also working to ensure financial sustainability of the network through various income-generation activities. We have set up an office in Balod district.

Kailash: The Kalinga TB Survivors Network in Odisha began working in 2018. Besides doing community education, we have trained network members on livelihood skills. One of our TB Champions in Khordha district has trained 17 people with TB on mushroom cultivation and poultry farming. We mobilised funds and set up a grocery store for the family of a person with TB who was paralysed. His young son who had left school was able to get back to studying. Presently, we have 14 district chapters and more than 800 members.

Sudeshwar: Currently, as TB Mukt Vahini, we are active in 35 districts of Bihar. We became the first registered network in India and to date, we have been able to support over 80,000 people with TB. At the policy level, we have done advocacy on stigma, rights, and to ensure availability of drugs and accessibility of services.

Poongodi: We launched our network in 2022 with a small group from six districts of Tamil Nadu. Today we are 2,000-strong. We identified that many people with TB were malnourished. Through local donors, we mobilised nutritional supplements for those who needed it most.

What role can survivor-led networks like yours play in helping India achieve TB elimination?

Himani: TB Champions work with the communities at the last mile and therefore, we know about the ground realities. For example, our network knows about different vulnerable groups in different parts of the State and the specific challenges in these areas. We can also play a role in finding solutions to some of these pressing challenges.

Kailash: Members of TB Survivor-led networks play a crucial role in supporting the TB elimination programme in Odisha. Under the government programme, an amount of Rs. 3,500 is being given to TB Champions and network members. We support people with TB, conduct awareness, counsel the caregivers, identify any challenges faced by affected communities and immediately provide feedback to the TB programme.

Sudeshwar: Activities by networks have promoted ownership among the general community, including local Panchayati Raj members. We have been able to highlight the true picture of TB services and care in Bihar and advocate to improve the quality of care and services.

How can we make community engagement for TB sustainable in India?

Himani: Engaging TB survivor-led networks in the TB response is the need of the hour. They are a bridge between the community and the TB programme.

Kailash: But there is a challenge. The network is not able to devote our time fully to TB due to a lack of financial resources. If networks are strengthened and they in turn mobilise other key stakeholders, community engagement will sustain.

Poongodi: Government-led initiatives, such as surveys, studies, data collection, and Active Case Finding (ACF) programmes, can greatly benefit from the involvement of TB Champions. Instead of relying on external parties, engaging TB Champions in these efforts can lead to more dedicated and high-quality contributions. This approach has a dual benefit: not only do TB Champions bring their unique perspective and expertise, but they also gain valuable experience and incentives.

If you were in-charge of the TB programme for a day, what are the policy changes that you would change or introduce?

Himani: We still use smear microscopy for TB testing which delays the diagnosis – rapid diagnosis like CBNAAT must be offered upfront. I would also like to add transportation costs in the Nikshay Poshan Yojana.

Kailash: Presently nutrition support is given to the person with TB. If the person with TB is the head of the family and 4-5 family members are dependent on them, then who will take care of their nutrition? I will make some policy-level changes here. Second, for the diagnosis of TB, several tests have to be done and they are all in different places in the facility. A senior citizen or someone who is extremely ill finds it challenging to navigate places. If all tests can be done in one place at the hospital, it will be a game changer.

Sudeshwar: I will strengthen the turnaround time for various aspects from diagnosis to treatment initiation. Like COVID-19, TB needs a campaign with multisectoral action.

Poongodi: I will involve the TB Champions and appoint one male and one female TB Champion in each block. There is no proper space or sometimes even a separate room for the TB programme. Most hospitals have only a small room, which is not sufficient and there is no privacy. I will construct a separate building for TB in each district.

What is your message to a person who is on treatment for TB right now?

Himani: I know that the TB treatment can be long and difficult. But TB is completely curable and the treatment is freely available.

Sudeshwar: Public sector facilities are good. Take a nutritious diet, stay stress-free, eat your medicines on time and complete the treatment. It’s your responsibility too to spread awareness once you are cured.

Poongodi: Please do not assume that you got TB because of any wrongdoing on your part. it’s often a result of low immunity.

What is your message to someone reading this who has never thought about TB before. What can they do to help India end TB?

Himani: I understand that those who have never thought about TB before may find it very strange to accept that TB is still a huge public health problem in the country. However, you can still play a positive role. Join TB survivor-led networks and help them in any way you can. Volunteer with NGOs working for TB care.

Kailash: Do not spread misconceptions about TB.

Sudeshwar: Treat TB like any other disease and never stigmatise anyone. Be empathetic and accept a person with TB wholeheartedly and support them to the best possible extent.

Poongodi: Be aware of TB, make others aware and influence those with symptoms to get tested.