Mumbai: By the year-end, tuberculosis survivors are set to launch the city's first women-led community-based organisation (CBO) for TB patients. The group aims to combat stigma through outreach programmes, address gaps in public health services with patient and family counselling, and ensure access to medication when govt supplies fall short.
Despite decades of high tuberculosis cases, the city continues to lack adequate counselling support for patients. Médecins Sans Frontières (MSF), an international NGO with an office in Govandi, provided crucial medication and mental health care to TB patients for years. However, its withdrawal from the country by Dec will leave a void in care.
The women-led CBO, with nine TB survivors on board and guided by MSF in its early stages, aims to fill that gap. In 2020, as the world battled the COVID-19 pandemic, Govandi resident Divya Sharma was diagnosed with multidrug-resistant TB (MDR-TB). Lockdowns delayed her access to treatment at Shatabdi Hospital, but by November, she began her nearly two-year medication course, supported by MSF staff through her recovery.
Sharma was among the two survivors from the city, part of the upcoming CBO, who attended the National Conference of Tuberculosis and Chest Diseases (NATCON) in Jaipur to prepare for the organisation's operations. The conference marked the presence of leading chest physicians, TB specialists, other advocacy groups, and survivors from across the country. It covered topics like new diagnostic tools, improved medications, paediatric TB, vaccinations, and the personal experiences of survivors.
"After recovery, I'm still dealing with side effects from the medications. I want to support other TB patients the way MSF supported me. The knowledge I gained from the conference will be put to use in the field," Sharma said. Meera Yadav, a prominent voice in the city's anti-TB advocacy and a survivor herself, is spearheading the CBO initiative. She was invited to speak at NATCON on her years of experience working with TB patients.
One of the issues Yadav raised at the conference was the sudden shutdown in June of the BMC-run TB Champions programme, which offered mental health support to new patients through former TB patients for a monthly stipend of Rs 10,000. "It was disrespectful for them to lose work without advanced notice," she said.
Regarding the CBO, Yadav added, "We're waiting for a couple more people to join before we move forward with registration. Our focus will be on ensuring access to medication, counselling for patients and their families, and including survivors in the CBO after recovery."
Ganesh Acharya, a city-based TB-HIV survivor and activist, said, "CBOs are for the community and by the community. Such initiatives have existed among people living with HIV (PLHIV) but not TB patients. This would likely be first in the country for TB. In African countries, community models are there for non-communicable diseases as well, and that has shown results in better treatment outcomes."