India has the highest burden of tuberculosis (TB) in the world – over 28 lakh people in the country are affected by it every year. More than 13 lakh people around the world die of it every year. Against this backdrop, every year, we observe March 24 as World TB Day. The problem is much more common than we realise. I didn’t know the full extent of India’s TB burden until I became a member of an organisation of experts and policymakers that works in support of the country’s TB programme. Undeniably, our country has progressed by leaps and bounds--the World Health Organization (WHO) recognised the reduction in the number of new TB cases and TB deaths in India from 2015 to 2022. However, several challenges need to be addressed in a mission mode. Of particular importance to me are the ones which arise out of gender disparities.
In India, just by numbers, more men contract TB of the lung, but women experience the disease differently, and are often affected by extra-pulmonary TB (REPRESENTATIVE PHOTO)
As some of us know, the disease most commonly affects the lungs, but it can also affect nearly every other part of the body, such as the lymph nodes, intestines, the reproductive system, and even our bones and the brain. While non-lung or extra-pulmonary TB constitutes 15-25% of all cases diagnosed each year in India, there has been a notable increase in such cases over the years. In fact, in Pune (where I live), extra-pulmonary TB constitutes 40% of the total cases reported in the last four years.
In India, just by numbers, more men contract TB of the lung, but women experience the disease differently, and are often affected by extra-pulmonary TB and, therefore, may not even show the typical symptoms of TB that doctors look for, i.e., persistent cough, low-grade fever, and significant weight loss over a short length of time, along with some others. As a result, finding and treating extra-pulmonary TB remains a challenge in India, and I’m sure this is compounded by the challenges that women generally face in accessing health care. Some of these barriers include a lack of financial independence, the societal tendency to de-prioritise women’s health, and the heavy stigma that still surrounds the disease, particularly for women. In fact, this stigma is so pervasive that many women hesitate to undergo TB testing for fear of the repercussions if diagnosed. These include fears of divorce, a negative impact on their marriage prospects, and the potential for ostracisation or social isolation due to widespread misconceptions that TB is incurable.
Coupled with inadequate information among care-seekers and frontline workers about TB symptoms commonly found in women, these factors lead to missed or delayed diagnosis among this chunk of the population, which keeps them from accessing life-saving treatment in a timely and effective manner.
Acknowledging these distinct issues, the Union government formulated a gender-responsive framework in 2019 to introduce gender-sensitive services across the TB care cascade. Its recommendations, which are aimed at stakeholders such as the TB programme, frontline workers, and survivor networks, require immediate attention and implementation. It is the need of the hour to raise awareness about TB in women--symptoms of lung and extra-pulmonary TB among women, their communities, and health care workers.
It is crucial to train Accredited Social Health Activists (ASHAs) and Auxiliary Nurse Midwives (ANMs) to recognise early signs of the different forms of the disease among women for timely referral to nearby health facilities. My engagement with Self-Help Groups (SHGs) in Pune has highlighted the transformative power of these groups in fostering women’s empowerment and enhancing their health literacy. Awareness drives that leverage credible and trusted community voices, such as gynaecologists, must be conducted to encourage women to seek care immediately after diagnosis and help destigmatise TB. The role of women’s collectives such as Mahila Arogya Samitis and TB survivor networks is also indispensable to the country’s fight against the disease, by way of providing counselling support to women and making a difference at the community level.
To successfully eliminate TB from India, we must make our health system not only responsive but also patient-centric and gender-sensitive. We need to acknowledge that TB can manifest and affect individuals differently, based on their biology, social dynamics, and economic standing. Hence, our interventions must be tailored to the unique requirements of patients. By putting women at the centre of our TB response, we can successfully eliminate TB from India.
Vandana Chavan is member, Rajya Sabha. The views expressed are personal
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