I first heard of Jayalakshmi, a homemaker-turned-community volunteer (CV) from Thanjavur, several months ago. As a trained CV with a tuberculosis project being implemented in five districts of Tamil Nadu, Jayalakshmi visits 300 houses every month to educate people about TB, identify those with symptoms and link them to the government’s free services. Her husband and daughter were diagnosed with TB and they had little knowledge about it. But once cured, she wanted to become actively involved in helping others. She is now well known in her community as the go-to person for TB. Hundreds of such women not only act as last-mile links to communities affected by TB, but also, in the process, experience personal empowerment.
The lack of awareness about TB, delayed diagnosis, stigma and out-of-pocket expenses remain big challenges. Today, there is widespread acknowledgement that TB survivors are well positioned to help address these. Take Sushma Mahali from Baharagora, Jharkhand, who attended a workshop for TB survivors in 2018 organised as part of a project to build ‘TB champions’. In the months since, she has been able to bridge the gap between the health system and tribal community, and convey authentic information in the local language. She supported over 70 people in six months and led three anti-stigma campaigns. She leads the Baharagora chapter of the state’s first survivor-led network.
The journey from a TB survivor to a champion is empowering. “I now have the courage and capacity to tell people about TB, something I didn’t have before. Now I can educate people about TB and help them navigate the healthcare system,” says TB champion Minoti Puran from Assam. Anitha, daughter of a TB survivor, CV from Chennai and part of a project engaging the private sector in TB, says, “I have studied till Class 5, but that does not stop me. Now that I have a stable job, I can ensure education for my kids and feel empowered to help others.”
We know that women, through SHGs and other forums, are proven resources to address public health challenges like immunisation and HIV. Today, women who have been ‘touched’ by TB are also seen as leaders. This World TB Day, let’s acknowledge the role women play in making our communities healthier, and free of stigma and TB. (The writer is a media associate at Chennai-based REACH, an NGO working in the fight against TB since 1999.)