Tuberculosis remains India’s most pressing health concern with the infectious disease killing an estimated 1,400 Indians per day, according to the Centre’s 2017 TB elimination plan.
But what is often overlooked is how TB affects the health of women and children.
TB kills more women globally than all other causes of maternal mortality combined, according to the WHO Global TB Report, 2015.
According to the central government, India reports the maximum TB cases every year, globally, as well as the highest TB mortality. India’s gender-responsive framework for TB states that more than a million women and girls are diagnosed with TB in India every year. There are no figures and neither are any collected on how TB affects gender minorities, like queer individuals.
The crisis of TB is rarely recognised as a gendered one.
In addition to clinical manifestations, TB also affects the social fabric and economic stability of families. An estimated one lakh women lose their roles as mothers and wives due to the stigma of TB, according to the India TB Report 2001 & 2020.
A study by the National Institute of Research in Tuberculosis, Chennai, found that parental TB led to 11% children dropping out of school and 20% children having to take up jobs to support their families. An estimated three lakh students may have permanently left school due to a parent suffering from TB.
Narratives from trans individuals and gender minorities indicate that there are challenges in accessing even a diagnosis and it is harder still to receive and continue treatment.
Between the numbers is a woman from Dharavi, whose journey through TB epitomises the silent struggles faced by many. Then, there is the trans woman who eventually gave up in her struggle against TB, unable to access care in the public sector and or the unaffordable private sector.
Stories like these of spending months in search of diagnosis, battling stigma and enduring the abandonment by families sheds light on the harsh reality of women and gender minorities in struggling with TB in India.
Despite their hardships, these survivors embody resilience.
Women and other gender minorities living in violently patriarchal societies face unique challenges in accessing timely diagnosis and treatment for TB. It is particularly difficult for gender minorities to seek care due to structural and social barriers, stigma in the health system and widespread poverty.
Societal stigma associated with the disease, coupled with limited agency and socioeconomic status of these groups, contributes to significant delays in getting healthcare.
Research shows that married women, fearing desertion or blame, hide their TB diagnosis, leading to an interruption in their treatment, which can have adverse outcomes. The burden of household responsibilities exacerbates the challenges faced by women, making it difficult for them to prioritise their health needs.
Additionally, the prevalence of indoor air pollution in rural areas, where it is mostly women who cook in poorly ventilated spaces, increases the risk of TB transmission and chronic lung diseases among them.
India’s response to TB must be gender-responsive and inclusive of all gender and sexual minorities and groups.
The government’s gender-responsive framework, introduced in 2019, is a welcome step in this direction. Mobilising political commitment and resources to ensure gender-equitable access to TB services, which is women and queer-friendly, is paramount. Healthcare programmes must be sensitised to the unique constraints faced by women and gender minorities in accessing care and completing treatment.
A good starting point is the widespread dissemination and training of the gender responsive framework. India needs an attitudinal change, strict guidelines on gender-responsive care and training. This should extend to the private sector as well.
There is a need for specific campaigns aimed at women and queer groups to help raise awareness about TB and reduce stigma within communities. Gender-responsive clinics that cater especially to gender minorities and their needs and provide nutritional supplementation can improve treatment outcomes.
Moreover, investing in the development of new tools, such as shorter treatment regimens and affordable diagnostics, is essential to tackling TB effectively.
Addressing the gender dimensions of TB in India is not only a matter of public health but also a human rights imperative.
Empowering women and queer individuals to access TB services and supporting them through their treatment journey is crucial for eliminating the disease as a public health threat in India.
By prioritising gender-responsive approaches, India can move closer to achieving its goal of ending TB and ensuring the health and well-being of all its citizens – leaving no one behind.
Akshata Acharya, a survivor of multi-drug resistant TB, is an author, theatre enthusiast. Manasi Khade, a survivor of extremely-drug-resistant TB, is a creative professional. They are both Fellows associated with Survivors Against TB, collective of survivors, advocates and experts working on TB and related comorbidities.