Battling Tuberculosis as a Woman in India

It’s a sweltering hot day in Amarpuri Colony, a neighborhood in central Delhi, as Ajmeri Khatun sits on the bed, gazing through the door at the alleyway that leads to her one-room dwelling. A small fan blows warm air, a fervent but ineffective warrior against the scorching heat. On the shelves behind the bed are household items, including a plastic bag containing TB medication. Khatun, 34, is now in the final months of her TB treatment. Her story is a classic case of misdiagnosis and incorrect treatment. It all began in 2020 when she was pregnant with her seventh child. The doctors initially diagnosed her symptoms as nerve damage and prescribed the wrong medication. 'I kept taking it but had no clue what was wrong with me. Then suddenly, one day, I couldn't move or even stand up,' says Khatun. When her neighbor took her to a local government hospital for further tests, that's when Khatun received the devastating news that she had bone TB.

In India, women and girls account for over a million cases of Tuberculosis (TB) each year. According to the World Health Organization (WHO), approximately 37% of the 2.95 million new cases in 2021 were among women. Although TB affects a larger number of men in India, social and cultural dimensions put women at higher risk of suffering if they develop the disease.

A community’s perception of TB influences attitudes towards TB patients and significantly affects how easily patients seek care. For women, accessing diagnosis and care remains severely limited. The most significant risk factor is the deeply ingrained stigma that disproportionately impacts women in communities and families, often leading to neglect and even abandonment. In fact, a study reveals that 40% of women in India were uncertain if their spouses would support them after receiving a positive tuberculosis diagnosis.

Efforts are being made under India’s National Tuberculosis Elimination Program (NTEP) to actively engage various stakeholders, including civil society and the community, as one of the key strategies to reach the unreached and provide support to individuals affected by TB throughout their care cascade. India is also one of the first TB high-burden countries to develop and have in place a National Framework for a Gender-responsive approach to TB, which recognises the gender differences that men, women and transgender persons affected by TB face.  According to REACH, a non-profit organization based in India and dedicated to combating tuberculosis for over 25 years, the emphasis on person-centered-health, particularly women’s health, has never been more crucial. "Until recently, there was this persistent belief that TB primarily affected men. As a result, limited attention was paid to the gender dimensions of TB", says Dr Ramya Ananthakrishnan, Director, REACH. "By adopting gender-responsive strategies, creating safe spaces and responding to gender-specific needs, we can empower women to seek diagnosis with ease and reduce delays. Our experience in working with survivors and those who are on treatment has also taught us that they must be fully engaged for effective health promotion and prevention of diseases. Their active involvement can help improve the quality of lives of those affected".

Recognizing the importance of targeted stigma reduction programs, REACH leads several community engagement initiatives and awareness programs that play a crucial role in improving health service coverage and delivering accessible and people-centered integrated care. Cured TB patients, also known as TB survivors or Champions, are trained by REACH and serve as a valuable resource of TB-related knowledge and contribute to making accurate information, diagnosis, and treatment options more accessible. Kamin Patel from Balod district in the central Indian state of Chhattisgarh is seen here clarifying the prevalent myths and misconceptions about TB in the community.

The relationships TB Champions form with people with TB are often deeply personal. TB champions dispel fears, alleviate loneliness, and nurture resilience, constantly reminding individuals affected by TB that they have the capacity to overcome stigma. Sulochini  Kumari, a TB survivor and champion from the eastern Indian state of Jharkhand, plays a vital role by engaging regularly with TB patients and their families. Through counseling and by sharing her personal experiences, Kumari offers support and ensures treatment completion.

While tuberculosis is a curable disease, early detection among individuals who appear to have symptoms is crucial to prevent its further spread. A study has indicated that inaccurate and inadequate knowledge about TB, including its transmission, causes, and symptoms, poses significant obstacles to effectively controlling the disease.1

For Ajmeri Khatun, in particular, the excessive delay worsened her health condition as she was unable to receive appropriate treatment. “If I was diagnosed and treated early on, my condition would not have worsened, and my chances of recovery would have been higher. I wouldn't have ended up bedridden. Who becomes bedridden? It's the person whose illness worsens.”