Forty tuberculosis survivors from across the country, who have formed a group called Touched by TB, have called for an increase in budgetary allocations to fight the disease.
The group was created to provide a forum for patients to tell their stories and strengthen the government’s TB programme.
“Until now, TB patients across the country did not have a platform to share their stories, the challenges they have taken to fight the disease. Also, the community has no voice to initiate talks with organisations that care for TB patients,” said Monica Balani, 42, a TB survivor from Delhi who lost her husband and son to TB over a decade ago.
“The HIV programme is so strong because there is community mobilisation. They are united and can influence decisions at the policy level,” she added.
The group was formed after the survivors met at a workshop organised by the NGO REACH in New Delhi last month. It created five regional level groups- in the north, south, east, west and northeastern parts of the country. They plan to expand across states later.
Rhea Lobo, 30, a film maker from Mumbai and a TB survivor, said that a national group could help alleviate the social stigma associated with the condition. “There has been no voice for TB. This is partly because of the stigma associated with it. When someone gets TB and is cured, it is important to not forget and share their experience to bring about a social change,” she said.
The members plan to approach the government, asking it to increase the budgetary allocation for the disease. “There is urgent need to pay attention to drug resistant and the budget cuts on TB. We will urge the government to look into it,” said Blessina Kumar, coordinator of the group.