One of Asia’s largest facility for treating tuberculosis, the 1,200-bed hospital in central Mumbai’s Sewri area, is a relic of the British Raj. It has high ceilings and open corridors, it is airy and quite unlike other public hospitals which are teeming with people all the time. It has nine wards, only three of which are dedicated to women. There is usually an eerie quietness in these wards, even during visiting hours, as many women patients do not get visitors for weeks on end.

There is only one woman for two men diagnosed with tuberculosis in the country, say figures collected by Revised National Tuberculosis Control Programme. This is the case in most parts of the world, with more men contracting the disease than women, except in places such as Afghanistan and parts of Pakistan.  So, about 4.7 lakh women, of the total 14.1 lakh cases, suffer from TB in India.

"The epidemiology all over the world is more or less the same," said Dr Kuldeep Sachdeva, additional director general, Central Tuberculosis Division, responsible for the revised national programme. "Our country is no different. More men as compared to women are diagnosed with TB. Men have a higher risk of exposure to the infection as compared to women." Tuberculosis is, nevertheless, a leading cause of mortality and morbidity in women.

Under the national programme, tuberculosis treatment and control is supposed to run on a system of Directly Observed Treatment Shortcourse which handles diagnosis, treatment and follow-up of the patient. Usually, despite diagnosis, most women tend to suffer more during treatment because of a combination of social isolation and stigma connected with the disease. Many undergo treatment with scant or no support from their families.

Delayed diagnosis

Both men and women delay treatment, but the delay is more in women in the case of women, said Dr MS Jawahar, retired scientist from National Institute of Tuberculosis Research, Chennai, who had participated in the four-country study in 2006, which also studied stigma of the disease in great detail. "Women tend to neglect their disease. Stigma is a huge issue among women. Even among the educated class, nobody wants to admit to having tuberculosis. It has been documented very well that having TB can affect marriage prospects or break engagements, or even marriages,” he said.

Field health workers say that women have “more tolerance” for the symptoms of tuberculosis. Economic constraints restrict women from going to a clinic for diagnosis and treatment. Many women depend on their husbands, sons or fathers to take them to a clinic, either because they are discouraged to go alone, or because they do not have the information about where to seek treatment.

The multiple responsibilities on women including cooking, cleaning, feeding children, taking them to school, and working also delay treatment. Patients also approach the private sector (at times chemists) who are not equipped to deal with a disease like TB.

Meera, a resident of Delhi, did not get herself checked for nearly four months because her husband would not give her money.  “I was coughing violently for about four months and had high fever," she said, but her husband refused to give her money to go to the hospital. "He would instead complain that I couldn’t do any work at home. He would throw vessels at me, and sometimes even the entire gas stove,” the 25-year-old said.

She was diagnosed with multi-drug resistant tuberculosis, where the patient is resistant to the first line of TB drugs and the treatment lasts two years. Meera now receives treatment from a clinic run by non-profit group Operation Asha that works with TB patients in the area.

Social and family problems

Even after diagnosis, women suffer considerable social consequences during treatment. But numbers do not reveal the considerable social consequences women face during treatment. As per estimates, over one lakh women suffering from TB are abandoned by their families every year. The women who continue to live with families are also shunned and isolated very often. Many women are also overworked and underfed, which is detrimental to their treatment.

Based in a village near Uttar Pradesh, Karishma was sent to her sister’s house in Mumbai to get better treatment last year. She had been sick for three to four months. After she was detected with TB, her sister and brother-in-law would give her food separately. Karishma would suffer from bouts of fever, due to the strong anti-tuberculosis medication, but had to still do all the household work.

“One day, they had a big fight and her brother-in-law and sister beat her so much that she fainted. She had to be hospitalised. Only after this incident did she tell me about her problems at home,” said Jyotsna Cheda, from the Kandivali centre of Navnirman Samaj Vikas Kendra, a non-governmental organisation that works with the state government to provide access to medical treatment in Mumbai slums.

Are socio-economic and cultural factors skewing the numbers of women in the country seeking treatment under the programme?

Some places such as Mumbai have a higher proportion of women suffering from TB, as compared to others. Mumbai has about 37% of the total reported cases, as the figures from the TB programme show. That changes the ratio from 2:1, the national ratio of men and women in the TB programme, to about 1.7:1 in Mumbai.

It possibly has something to do with the boosted tuberculosis programme – the Mumbai Mission for Tuberculosis – which was started in 2012. The mission was the first of its kind in India, implemented by the civic body, and it boosted the capacity of diagnostic machines, health workers, and treatment facilities in the city, with the New GeneXpert machines being able to diagnose the disease in a few hours.

Also, the epidemiology in the city is different, Dr Sachdeva said. “In urban areas where indoor pollution levels are high, the possibility of more women being infected with TB is high. The slums in Mumbai are really bad – in terms of ventilation, size, sanitation, light indoors – as compared to the slums in the rest of the country,” he said.

The national programme works on the system of passive case finding, which though a cost-effective method, requires the patient to show the initiative to visit a government health centre, which is not always accessible, especially in the rural areas.

Looking for patients

“In 1965, we felt that the patient should come to you. Now, we feel that unless we bring them in the programme, the transmission will spread at a rapid speed. One patient creates 10 more cases,” said Dr Sheela Rangan, a public health expert who has worked on several papers on gender and TB.

Active case finding involves door-to-door surveys, screening for symptoms and referrals. In case of passive case finding, where the health worker does not actively screen the population, women may not come forward to get tested. A study done in Nepal, published in Tubercle journal (found that as compared to self-referred cases, active case finding helped bring more women and older people under care. This means that more men as compared to women were found in active case finding.

Some non-governmental organisations are following the cue, and trying to bring more women in the programme. Inter-Aide Development India, a French non-profit, that works with several organisations in Mumbai, is carrying out a pilot programme called LIMIT, since 2014, in which the health workers are systematically visiting all the houses in a fixed population and detect persons having symptoms of TB to refer them to the national programme for diagnosis.

“Our workers visit 60 houses per day enquiring about people’s health, especially screening for tuberculosis symptoms such as cough or fever for more than 15 days," said Sachin Jagtap, project co-ordinator with Lok Seva Sangam that works in Govandi area in Mumbai.  "We never talk of TB directly, as people do not respond. Many women are home at the time in the morning when we visit. Also, the absence of husbands at the time, who go out to work, helps as women do not like talking about their health in front of them," he said.

“We tell them the check-up and treatment is free, plus a person is coming home to pick your samples," Jagtap added. "We also have to do a follow-up in many cases. Since the women have a one-to-one connection with our staff, we are detecting TB in the cases early,” he explained.

The LIMIT pilot is bringing more women in the programme. In Inter-Aide’s programme all over the city and its outskirts (areas such as Virar), with about 3000 patients, they had about 50% female patients. In the LIMIT pilot in Govandi area, with 470 patients, there are 60.4% female patients.

Finding more women now

“I do not think there is a rise in the incidence of TB cases among women. It is just that we are finding them now,” said Dr Ashish Malekar, Program Manager, Tuberculosis Control Program, and Executive Director, Inter Aide Development India that partners with NGOs that work with TB patients in the community.

The government programme has only recently started acknowledging the disparity in the reporting among men and women in the TB programme. In 2012, the government started collecting gender-segregated data only after the launch of Nikshay, a web-based programme that helps healthcare professionals report and monitor real time data about TB.

Despite having launched it three years ago, the government is yet to include the male-female tuberculosis data in their annual report. “When we launched Nikshay, we made a conscious attempt to collect data related to gender, so that we can set our agenda and strategy based on that. Currently we have about 33% of women cases in the country. We want to increase it to at least 35-37% in the coming years,” said Dr Sachdeva.

The biggest advantage of diagnosing women earlier is that they follow through the treatment better. The figures collected by the national programme show that women are more likely to follow the treatment to its logical end. While the default rate in the country is 7% for men, it is only 4% for women. This impacts the mortality rate due to the disease among women, which is 4% as compared to 6% among men.

In Mumbai too, 6% of women patients default on treatment, as compared to about 10% of male patients, said Dr Daksha Shah, TB officer of the city.

“There is enough data on women’s high adherence to the treatment if they can afford the regimen and sustain it. It is not clear why they do better. But papers on non-adherence show that factors such as alcoholism, migration, and tobacco-use among others, which is lower among women,” said Dr Sheela Rangan.

Dr Rangan feels that the multiple roles that women carry out, help them sustain the treatment. “If a woman is diagnosed, she is more likely to get better.  She plays multiple roles that does not allow her to play the sick role. It is clearly a gender thing.”

Many women patients are keen to complete their treatment, sometimes despite being away from their marital homes.

Sarita, 24, who lives in Lanjiri village, Jalna district, who came to Mumbai to her sister’s place in Kandivali to get herself treated, took up housekeeping jobs to supplement her income. “I am not going to my husband’s house (at Jalna) until I get better,” she said.

(Names of the patients have been changed on request)

Menaka Rao is a recipient of the 2015 REACH Lilly MDR-TB Partnership National Media Fellowship for Reporting on TB.