As another World Tuberculosis Day passes by, India continues to struggle with a staggering burden of TB. The country accounts for 27 percent of the world’s 10.4 million new cases of the disease, and 29 percent of the 1.8 million deaths from it annually. Women and girls make up nearly 1 million of the estimated 2.8 million TB cases in India each year; it is the fifth leading cause of death among women in the country, accounting for nearly 5 percent of fatalities in women aged 30–69.
Women in India are intensely stigmatized when they have TB. In both rural and urban settings, they are offered little support at home, routinely isolated and discriminated against by close relatives and forced to eat and sleep separately – and yet are still expected to fulfill family obligations and carry out household chores. Married women may be rejected by husbands and in-laws, beaten and exiled to their native homes or substituted by a second marriage. They are often held personally accountable for contracting TB – at times as “divine punishment” for disreputable behavior – and are believed to pass it on to future generations.
Girls with tuberculosis are taken off the “marriage market.” The disease can affect the fates of entire families, whose members are held responsible for arranging their daughters’ unions. It is no wonder that a diagnosis of TB provokes trepidation and secrecy, leading to delays in seeking healthcare and interruptions in treatment. People who have been diagnosed sometimes prioritize privacy over the quality of care; despite the higher cost, women often use the private health sector in an effort to keep their diagnosis confidential. In turn, delays in beginning the treatment of TB and failure to keep to prescribed treatments fuel transmission within communities and the emergence of drug-resistant strains.
The stigma and injustice faced by women with TB are a harsh reminder of how entangled these issues are with the role of the female in Indian society, and the gender-based inequities that continue to be fed by age-old cultural norms, economic disparities and lack of adequate social protection.
While men do face stigma – they worry about their social status and community stigmatization – they are seldom rejected outright. They do fear being judged through their inability to provide for their families and feel their masculinity is threatened, but are not held culpable for the diagnosis. They are excused from routine obligations and continue to receive the much-needed support of their wives and loved ones – something many affected women must forfeit.
How can we mitigate the negative impact of TB on girls and women? Counseling women with the disease and offering them social support during treatment may help women deal with their diagnosis and strengthen their capacity to resist internalizing the exclusions they perceive or experience. But these are quick-fix remedies with no long-lasting effects beyond the course of tuberculosis treatment or cure. They do not alter the underlying determinants of TB stigma in women; they just allow them to cope with it better. While an individual-level approach is helpful – and indeed necessary – to alleviate women’s plight, we cannot be complacent about the added need for social change.
We can learn from the design of interventions to reduce the stigma of HIV and mental health, which combine various approaches to combat negative community perceptions and reduce the social construction of stigma. Examples include: mass educational and literacy campaigns; social media messaging; television; creating venues for communities to come into direct contact with people with HIV or mental illness and learn about their challenges and needs first-hand; and protest and advocacy. Such campaigns have been highly successful in the case of HIV. Another approach is through legislative and policy change, whereby acts of prejudice are stifled through legal and human rights-based approaches.
At long last, India seems to be waking up to the realities of its enormous TB epidemic. The country just announced a bold, ambitious plan to eliminate TB by 2025, and the Union Cabinet has also approved the National Health Policy 2017 that proposes to increase public health expenditure to 2.5 percent of GDP and plans for a larger package of assured comprehensive primary healthcare. We hope these bold new plans and proposals will include substantially higher funding for TB, provision of quality care that is gender- and patient-sensitive and clear plans to counter the stigma and address the barriers that patients with TB face, especially women and girls.
At a societal level, if we want to tackle the systemic social persecution of women with TB in the long term, we need to confront the social persecution of women in general. This means looking beyond the disease to the person who lives with it and confronting the inequity she faces in her community head on.
The views expressed in this article belong to the author and do not necessarily reflect those of Women & Girls.