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.
The stigma around the disease is so strong that women detected with or suspected of having tuberculosis have been abandoned, or even ostracised. As of 2007, over one lakh women suffering from tuberculosis in India were being abandoned by their families every year. Of the women I met, many were sent to their relatives or parents’ house to recover. Marriages or engagements were called off due to the disease, and sometimes these women were even denied access to their children.
Women face severe consequences of the one-sided conversation surrounding tubercolosis, even while undergoing treatment. This can be seen in a 2004 study on the impact of gender in a rural Pune district which showed that many women living in joint families suffered more than women living in nuclear families. Of the nine women living in joint families, eight were driven out by their in-laws and were taking treatment in their parents’ home. Some families even insisted on a medical certificate stating that the women were cured before allowing them back into the marital homes. The unmarried women were sent to their relatives’ homes in distant places for treatment to prevent the possibility of neighbours or potential suitors coming to know of their illness.
In July, I spoke to a 25-year old woman whose husband had abandoned her seven months ago. Sitting at a DOTS centre at Tekhand village, Delhi, she told me that her life unravelled after she started getting sick with tuberculosis. Before she was detected with the disease last year, she was coughing incessantly and had high fever for about four months. She was unable to move by that point. “My husband’s behaviour changed drastically after I got sick. He was upset that I wouldn’t work, and would complain constantly about it.” Her husband, to whom she had been married for eight years, sent her and their two children to her mother’s home.
A woman from Ratnagiri district in Maharashtra also faced similar consequences. The 27-year old fell sick almost immediately after her marriage in May 2014, with constant bouts of fever and cough. However, her husband’s family chose to ignore it. Her in-laws were more worried that she was not menstruating, and remarked that she might not be able to bear them a child. After nearly a year of being ill, in February this year, her mother forcibly took her to Nallasopara, a town outside Mumbai—where her brother lived—for treatment. She had shrunk to 28 kilograms by then. “When I was taken to a hospital, the doctor said that there was no guarantee I would survive. I had no blood in [sic] veins of my hand, and they had to draw blood from the veins of my neck. I was on the verge of death and was saved,” she explained. When we met in August, she was receiving treatment at the Nallasopara DOTS centre run by the Maharashtra Janvikas Kendra (MJK). MJK works with the local civic authorities in case detection and treatment programmes for tuberculosis patients in Mumbai and townships close to the city. Her husband visited her in Mumbai to serve her divorce papers a few months after she began her treatment, accusing her having the disease in the past. “I am not returning till I get better. Let’s see if they take me back. They keep telling me I must have had the disease in the past, and I didn’t tell them,” she said, shaking her head in disbelief at her situation.
In the case of the 35-year-old patient in Kandivali, the people in her neighbourhood were speculating about her disease immediately after the health workers visited her house. As the health workers stepped out, the 35-year-old patient’s neighbour asked them if she had tuberculosis. A little further down, a woman asked the health workers if “there was somebody suffering from HIV in the house.” Many researchers who studied the effects of stigma on tuberculosis attribute it to the disease’s links with HIV, since co-infection between the two is common. An unwritten rule, which public health officials insist on, is that journalists should not reveal the identity of tuberculosis patients, precisely because of the nature of this disease.
“The information about tuberculosis is just not accessible for people, especially for women.” Blessina Kumar, the chair of Global Coalition of TB Activists told me over the phone. Despite being fully curable, the myth persists that it is a death sentence. Once administered medication, a patient ceases to be infectious in two months. “Women depend on their husbands, sons, or fathers to take them to a health centre. Not knowing where to go and what they can do if they are sick only adds to the fear and leads to further stigmatisation,” she said.
For instance, after suffering wracking coughs for more than three months, and having received no help for treatment from her husband or in-laws, a 24-year old woman from Lanjari village in Jalna district, Maharashtra, came to Mumbai on the pretext of meeting her sister. She finally got herself checked at a hospital and discovered that she had tuberculosis.
When I met her, she weighed barely 38 kilograms. “It was the season of wheat chaffing, and I just couldn’t get out of work,” she said. One private doctor who was unable to diagnose her recommended that she get an X-ray taken, but no one in her family supported her. She has two children, including a two-year-old boy. The woman added that her mother-in-law accused her of being “weak” and not used to working hard.
Having found several odd-jobs to supplement her income while taking her daily DOTS treatment from NSVK’s Kandivali centre in Mumbai, she is adamant about completing her treatment, “I will go back only after I get better. Now my husband knows I am more able, he is telling me to come back and work on the farm.”
While both men and women tend to delay diagnosis to some extent, public health experts say that women tend to delay diagnosis and treatment more. Most health workers I met in Delhi and Mumbai say that women display a “higher tolerance” and ignore their symptoms while juggling multiple responsibilities—cooking, cleaning, feeding children, taking them to school, and working—all at the same time. Some women do not have the resources to go to a clinic for treatment, and some are even discouraged from going to clinics alone. Additionally, a lot of time is wasted in going to private practitioners, who are not always equipped to look for tuberculosis. A 2012 Public Library of Science study would seem to corroborate this—of the 108 people sampled, women, on an average, sought care after 6.3 months of exhibiting symptoms, compared to the 3.8 months that men took.
Unfortunately, the lack of many large-scale studies on the issue of gender and tuberculosis in India also affects the visibility of the disease. “I am not sure there is a special reason for the lack the studies on the issue of gender and TB. Just like [sic] there haven’t been many studies on childhood TB,” said Kumar.
Dr Yatin Dholakia, honorary secretary of the Maharashtra State Anti-TB Association said, “I also think that the fact that there are not big studies on this issue is a gender issue in itself.” Part of this, according to the 2014 WHO multi-study, might be attributed to the recent and gradual shift in studies on tuberculosis from the context of poverty to questions of stigma and gender.
Between April and July last year, the Foundation of Medical Research (FMR)—a Mumbai-based research organisation that conducts research on tuberculosis and other diseases—conducted a study with 76 people. The study seems to indicate that women tended to delay their treatment more than men.
The research tracked health-seeking behaviour in three stages: from the onset of symptoms to visits to the first provider (any doctor, chemist, or non-allopathic doctor), then to the diagnosis of tuberculosis, and finally, treatment. Since the onset of their symptoms, two women, who were detected with multi-drug resistant tuberculosis (MDR-TB), had delayed their treatment for about 2 years and around 8 months respectively. MDR-TB is a strain of tuberculosis that is resistant to first-line tuberculosis drugs.
The connotations of being diagnosed with tuberculosis also become a deterrent when it comes to the diagnosis. Dr MS Jawahar, a retired scientist from National Institute of Tuberculosis Research, Chennai said, “Stigma is a huge issue and we have to keep their confidentiality. But, confidentiality has its implications.” He went on to explain that even the presence of a tuberculosis van—used for collecting samples or by advocacy programmes—could not be seen standing near the house of a suspected patient.
Even the collection of a sputum sample is stigmatised. A WHO multi-site study states that there seems to be a deep cultural issue in coughing and spitting to produce sputum for testing. “Women do not want to give their sputum samples. They say that they do not want to spit in front of others. We have to leave the bottles with them so that they give us the sample later. Sometimes even after referring them, it can take up to two months for them to get themselves tested,” said Dhanashree Jadhav, a supervisor from NSVK.
Many women also hide the fact that they had tuberculosis in their childhood, making medical histories unreliable and adversely affecting diagnosis in the event of a relapse. “This is true especially when the husband is accompanying the patient. Tuberculosis is still a social stigma and is often not revealed to a partner and his family,” said Dr Vishak Acharya, Professor of Pulmonary Medicine based in Mangalore, Karnataka. He added that a past infection or relapse could mean a higher possibility of the patient developing drug-resistant tuberculosis.
Some guidelines in the National Programme also make it difficult for a woman to start treatment soon. For instance, the district tuberculosis officers in some parts of the country insist on verifying addresses before they dispense medicines. “Single, young women do not want everyone to know they have tuberculosis, especially their landlords,” said Kumar. The tendency to give fake or unverifiable addresses is a common one, becoming a further deterrent to treatment. Once the women seek treatment, their compliance levels are higher than men, said Dr Jawahar.
That the stigma associated with tuberculosis is disproportionately distributed on the grounds of gender can be seen by the treatment meted out to women in recovery. In fact, a visit to the women’s ward in Sewri TB Hospital at Mumbai during visiting hours made this discrepancy apparent to me. The men’s ward was filled with women and other relatives plying them with food brought from home. The women’s ward was starkly empty with almost no visitors. “My husband comes to see me once in 15 days,” said a 30-year old woman who could barely talk because of the damage done to her vocal cords by the disease. The narrated accounts of social responses seemed to suggest that women were obliged to support their husbands with the disease, but the men did not have the same duty towards their wives.
Stigma, social discrimination, and family rejection contributed substantially to emotional and psychosocial distress from tuberculosis for women, states a 2006 paper by the WHO on the impact of gender and tuberculosis in four countries, including India. The study showed that around one-third of the women at the Chennai site reported psychosocial and emotional distress among the results of their tuberculosis. A few women who participated in the study said that they had thoughts of suicide, while some indicated that their husbands or in-laws had explicitly told them to commit suicide. The paper goes on to recommend that the health services and DOTS programmes should develop capacities to evaluate the psychosocial, emotional and social aspects of tuberculosis and provide locally relevant gender-sensitive support.
Many NGOs such as NSVK, Lok Seva Sangam are incorporating counselling for families in their programmes to reduce the impact of gender discrimination on women. For instance, the patient from Lok Seva Sangam, is now on better terms with her family after health workers counselled them on the disease.
Operation Asha—an NGO that works in India and Cambodia to bridge the gap between government medicine distribution centres and affected communities—has a protocol to deal with female patients that involves asking families to keep an eye out for obvious signs of depression, for which they could be referred to a hospital or health clinic. Explaining the process for handling tuberculosis in women, the founder and president of Operation Asha, Dr Shelly Batra said, “When a lady is detected with TB, we counsel the families. The message is that TB is curable and not a curse from the Gods. We tell them the basic facts that during the infective period of one or two months, the family has to take basic precautions of covering mouth, maintaining distance and disposing the sputum. Then, once the sputum is negative for TB, there is nothing to fear.”
However, in India, there is no targeted programme to address the difficulty of diagnosing tuberculosis among women. “The information, education and communication material related to TB could include more female-centric material,” said Dr Ramya Ananthakrishnan, executive director, Resource Group for Education and Advocacy for Community Health (REACH), a Chennai-based advocacy group that works with various stakeholders in the programme, including the media. One such instance of female-centric material was literature released by the WHO informing women with tuberculosis that they could breastfeed their children. She also suggested that other measures, such as involving a female celebrity in public broadcasts about the disease, would help reduce stigma of the disease.
The WHO multi-site study recommends that such a programme could recognise the gender-specific barrier against spitting, while clinics could ensure privacy and a well-ventilated space for patients to produce sputum,. The WHO study also states that it is important to recognise the importance of counselling at every stage of disease, including diagnosis, and emphasising the effectiveness of the treatment to reduce the stigma attached to the disease.
The Revised National Tuberculosis Control Programme (RNTCP) works on the system of passive case finding, a cost effective method, in which it awaits the initiative of a sick person to visit a government health centre. While the DOTS centres are not very far off in cities, in the rural areas, as recorded by this study, a patient might have to travel 15 kilometres or more. Making the centres more accessible or having more DOTS providers in the community would also help bring more women in the programme.
“If more opportunities are created for screening, the ratio could tilt a little more towards women. Screening more women will reduce the spread of the disease in the family, especially children,” said Dr Kuldeep Sachdeva, additional director general of the Central TB Division, which is responsible for rolling out the RNTCP. Until then, however, tuberculosis continues to be a national pandemic, especially for the women of India.
The Reporting for this story was supported by the REACH Lilly MDR-TB Partnership Media Fellowship Programme.
Menaka Rao is a freelance journalist from Delhi. She writes on law and health.