National coalition aims to address problems that TB patients face

Recognising the need for a national-level coalition for tuberculosis patients, 40 survivors from across the country have formed Touched By TB, a coalition of TB-afflicted people in India.

Affected by TB twice, 51-year-old Dean Lewis feels the coalition can help TB patients in their many trials. “TB first hit me in 1994 and later in 2004,” said Lewis, who now works full-time as an infectious diseases consultant for global agencies. “In 1994, my family was able to afford private treatment. However, in 2004, when my TB relapsed, I was poor and homeless. I had lost my job, was living in the slums of Bandra, and could not afford private treatment. Since I had no permanent address to register for treatment, I was unable to access government treatment too,” he said.

Every minute, one person dies of TB in India. “A need was felt to build this coalition to have a united voice for patients in policy-making. While HIV has a very strong voice in the community, TB patients are scattered and fragmented. The government approach is top down in policy-making. We aim to change that with the coalition, ensuring equal participation of patients in the government programme,” said Lewis.

“As a coalition, we will function from five regions: north, west, east, south and northeast,” said Rhea Lobo, a 30-year-old TB survivor who is a part of the coalition.