Health worker Usha Jadhav goes knocking on doors of shanties in Dharavi's congested bylanes twice every week to convince suspected tuberculosis (TB) patients to visit the civic health post and submit a sample of their sputum.
Two of the six civic-run health posts in Dharavi have been functioning as sputum collection centres since a year. The samples are sent to JJ hospital in Byculla and Hinduja Hospital, Mahim, which have specialised laboratories to test for TB.
While two collection centres for 3.5 lakh slum-dwellers are not enough, it is a beginning, say health workers. "We have been working in Dharavi for eight years, but the level of infection has not come down because of inadequate diagnosis and patients not completing treatment," said Leslie D'lima, trustee and director of Maharashtra Jan Vikas Manch, a non-profit organisation that works in public health sector.
Four of the 12 patients detected with totally drug resistant (TDR)-TB recently were from Dharavi (the Centre has since re-classified TDR-TB as extremely drug-resistant (XXDR)-TB).
According to D'lima, more than 100 patients from Dharavi are put on TB treatment every month. Among them is Ahmed Khan (name changed), 50, who started TB treatment last month. "I was unable to do anything and would cough all night. Finally, I took a sputum test and tested positive for TB," said Khan, who lost his job as a security guard after contracting TB. Khan spent five months visiting private doctors before approaching the Directly Observed TB Short-Course (DOTS) centre.
Activists say that many private doctors either cannot diagnose TB or make patients do unnecessary tests. "Poor ventilation, lack of sunlight, dampness or humidity in the environment is favourable for the growth of TB bacteria," said Dr Ramesh Chaturvedi, head of preventive and social medicine, Sion hospital.
In Jogeshwari's Prem Nagar slum, Haseena Sheikh (name changed), 35, contracted TB two years ago from her 16-year-old daughter. Her son also had TB. "I advised Sheikh to move to a bigger house. The disease was spreading faster in her tiny room," said Namrata Ranpise, a health worker at Rangoonwala Trust that works with TB patients in Jogeshwari (East). The family moved to a bigger room and has completed treatment.
"For slums in particular, the civic body will follow the malaria control model. Health workers will go door-to-door to identify classical TB symptoms and send patients to dispensaries," said Manisha Mhaiskar, additional municipal commissioner.
Stigma a hurdle in seeking treatment
When 15-year-old Shameem was detected with tuberculosis (TB), instead of approaching a Directly Observed Treatment Short-Course (DOTS) clinic, her parents consulted a private doctor in Andheri. She died two months later.
"Shameem was suffering from TB for a while before her parents brought her to our clinic. They refused to go to a DOTS centre even though she would have got free treatment there because they did not want her to be identified as a TB patient by relatives," said Namrata Ranpise, a health worker at Rangoonwala Trust that works with TB patients in Prem Nagar, Jogeshwari (East).
Though TB is curable, the stigma attached to the disease is a major obstacle for patients seeking treatment. "In 2004, when we began working in Jogeshwari, people would just bang the door on us. They were scared of losing their jobs or souring relations with people. It's much better now," said Nisreen Ebrahim, chief executive officer, Rangoonwala Trust.
"Some patients insist on taking private treatment, which is unaffordable at times, but refuse to go to the Sewree TB hospital," said Leslie D'lima, trustee and director of Maharashtra Jan Vikas Manch, an NGO that assists TB patients in Dharavi, Kurla and Virar.
For young, unmarried girls, the problem is worse.
"Many people are scared to take a young girl of marriageable age to a DOTS clinic. I tell people that their daughter's life is more important than her marriage," said Shabnam Khan, whose school-going daughters suffered from TB three years ago.
D'lima cited the case of a girl who recovered from multi-drug resistant TB, but is yet to find a groom.
"Fear of dying consumes these patients. It takes a long time for them to accept that they have TB and start treatment," said D'lima.
To spread awareness, former TB patients have become a part of Jagruti Support Group, which encourages patients to get tested for TB and take the treatment seriously.