On 25 June 2015, Sulabha Kadam, a health worker in Mumbai who works with the Navnirman Samaj Vikas Kendra (NSVK) —a non-governmental organisation that works with the state government to provide access to medical treatment in slums—hiked up a hillock to the house of a 35-year-old woman who was suspected of having tuberculosis. She was told that no one in the house was sick. Twenty days later, when Kadam stopped by the house as part of a regular follow-up, she found the woman lying on a cot unable to move. Kadam had the woman’s sputum checked. She tested positive for tuberculosis.
“It is only after these women are so sick that they decide to do something about it. I do not understand how her husband, who works as a rickshaw driver, could ignore her condition for so long. Only when she could not move at all did he take interest. This woman possibly had TB for months before she was diagnosed,” said Kadam. Kadam works as a Directly Observed Treatment (DOTS) provider for anti-tuberculosis medicines at NSVK and regularly goes into the community to ask people if someone in a family has a persistent cough, fever, or other symptoms related to the disease. These cases are then referred to a government hospital or laboratory.
The 35-year old, who weighed just 35 kilograms at the time of diagnosis, said she had been having bouts of vomiting for a long time and that the private doctors she consulted had told her that there was “nothing wrong” with her. Only after taking anti-tuberculosis medicines for about 10 days was she able to get out of the bed, and even bathe herself. During this time, the responsibility of taking care of the household chores and of her four other daughters fell on her 12-year-old daughter.
According to the 2014 World Health Organisation (WHO) Global Tuberculosis Report, India has the highest burden of tuberculosis with an estimated 2.16 million cases out of a global incidence of 9 million. Despite its prevalence, the stigma surrounding tuberculosis is such that patients often delay or deny themselves treatment even after diagnosis, rather than admit the cause of their ailment. Experts, in several studies, attribute this to a lack of knowledge regarding the disease’s transmission and its infectious nature. These studies further claim that a part of this stigma is also due to the association of tuberculosis with poverty: although the disease trickles across all classes of society, the poor are at greatest risk, both because they are in greater contact with other sufferers (due to factors such as overcrowding at home, at work, during commutes and socialising), and due to their weakened immune system resulting from poor nutrition.
The stigma of tuberculosis dates back to the early nineteenth century, with the emergence of colloquial names such as “white plague”, with reference to the pallor common among tuberculosis patients, and “consumption”, reflecting the atrophy of an infected body. This engendered fear of the disease and those with it, according to a 2011 Lancet paper exploring the stigma of tuberculosis the world over. “When people are stigmatised for having a particular disease there is usually an implicit assumption that they have brought it upon themselves and this helps justify the stigmatisation. So, it becomes a socially constructed, self-fulfilling process,” said Anna Waldstein, medical anthropologist from the University of Kent, UK, who is quoted in the Lancet paper. Of this stigma, women are the worst affected. Health workers in Mumbai and Delhi say that, when confronted with the diagnosis of tuberculosis, many women ignore it.