TIRUCHY: For 41-year-old Chandra, stepping out of her house had become a herculean task, not because of any disability but, due to being afflicted with Tuberculosis in 2002. She was exposed to the disease while she was tending to her husband, also affected by TB. It is not the disease, says Chandra, but the stigma that people dread the most.
Transferring TB through physical contact, via birth and even being branded incurable, are some of the myths and misconceptions that Chandra had to battle. With her weight, Chandra also lost her self-confidence. It took a chance encounter with someone who had recovered from TB to help Chandra regain herself. Stigma after a point, she says, leads to the feeling of isolation. Thus, people stand at the risk of losing their jobs and lives. Some have even refrained from disclosing their diagnosis to their families, Chandra adds.
Cut to 2023, Chandra has not only been able to conquer the stigma, but has also helped others achieve the same with the help of the Resource Group of Education and Advocacy for Community Health (REACH). She was introduced to REACH by a TB surveyor. The NGO was established in 1999 in Chennai and aims at shattering stigma around TB. It came after the Revised National TB Control Program (RNTCP) was rolled out in Tamil Nadu and has evolved ever since to emerge as a key partner in the fight against TB in India, with Chandra as one of the TB champions.
A TB Champion (or a TBC) is someone like Chandra, who has survived TB by taking proper medication for six months and following up with checkups for two years. She was trained in ways to support and help TB patients, and has nearly 200 survivors to her credit. Tiruchy has nine TBCs in total.
“Usually, we will spread awareness in person. Places like temples, 100-day working camps, bus stands, self-help groups and mostly public places. We also go to villages in and around the districts and speak with the panchayat leader to help the patients by referring them to hospitals, informing them about regular checkups, etc,” says another TBC, Muthuselvi.
Fundamental to awareness is germinating the belief that TB is curable. A TB check-up is recommended if you have a cold and cough lasting more than 2 weeks, loss of appetite, and fever in the evenings, explains Chandra. REACH is established in four states and seven districts in Tamil Nadu. The survivor-led network supports its expansion, improves coordination with the health system and establishes good governance. It also provides people with nutritional support in the form of cereals, protein shakes, and other healthy items.
They will also be informed about the Nikshay Poshan Yojana Scheme. Chandra adds that there are sangams, or a union, for patients of TB and regular meetings are conducted at the government hospital in Trichy. The sangam will help people with jobs, in a bid to make them regain independence.
“Recently, we conducted a training session on preparing fast food and 10 members participated. They were given certificates,” recollects Chandra, who is more invested in destigmatising TB patients than earning a livelihood.
REACH is currently implementing the ALLIES, or Accountability Leadership by Local Communities for Inclusive, Enabling Services project, supported by the USAID in the four states – Chhattisgarh, Jharkhand, Odisha, and Tamil Nadu. Muthuselvi adds, “To eliminate TB by 2025 and to make India a TB-free country.”
(Edited by Shrija Ganguly)