There are two explanations for how Reshma (name changed) died. In one, she is a disease statistic. A 30-year-old new mother, living on the pavement in Jaipur, died from contracting tuberculosis. The bacteria settled in her lungs, immunity weakened, medicines failed. 

The other story is not as linear or logical. Reshma’s family cast her out when the diagnosis came belatedly. She fought disease and destitution on the streets, between the stifling summer sun and crisp cold at night. The absence of proper treatment, and minimal food, however, allowed the TB pathogen to evade her immune defence.

Reshma’s story – as a woman and as a person without shelter – isn’t singular. A new study, supported by the Dr. Amit Sengupta Fellowship on Health Rights (ASFHR), captures the gendered lens of a clinical disease and challenges rigid mortality numbers. In addition to economic precarity, patriarchal norms decided if Reshma’s cough was accurately diagnosed, when she reached a health facility, how often she followed the six-month drug regimen, and if she would go on to develop drug-resistant TB infections. Experts suggest that stigma and isolation further wrinkle women’s access to care in a system becomes hostile to people lacking institutional agency or autonomy. 

The data gap

The recent survey illustrated how this cycle of inequity plays out, documenting 17 cases of homeless people living with TB in Jaipur. Overcrowded and unsanitary conditions accelerated TB transmission; malnutrition and weak immunity further increase their risk of contracting TB. HIV coinfection, alcoholism, smoking and tobacco chewing also worsened their TB infection. Lack of shelter further complicated access to healthcare – homeless people were less likely to receive a timely diagnosis and treatment, and in turn, more likely to develop drug-resistant strains of the disease.

The study found a pronounced impact on women like Reshma, who feel unseen by both the community and the medical system. India in 2022 accounted for the world’s highest cases of tuberculosis, per this year’s World Health Organisation Global Tuberculosis Report. Local estimates show the overall occurrence of TB among the homeless population was around 85 cases per 1,000 population Within them, the prevalence of TB among homeless females was 1.5 times higher than homeless males.

“Homelessness and social stigma contributed to her isolation, mental struggle and marginalisation.”

Anupama Srinivasan, Assistant Director of REACH, explains that women’s experiences often play out in a blind spot. “We do not as yet know enough about the specific experiences of homeless persons with TB… Homeless women are one step beyond that.”

In larger national surveys, more men are notified than women, driving the perception that TB is a ‘male disease’, says Ms. Srinivasan. However, “it’s not just the numbers we need to focus on; it’s the experience of healthcare itself.” TB is a disease of inequity, she explains, where women’s health-seeking behaviours and adherence to treatments depend vastly on the social support available to them.

Restricted access to nutrition, financial support

India’s Nikshay Poshan Yojana (NKY), integrated in 2018 in the national TB programme, promises a monthly cash incentive of ₹500 through direct benefit transfers (DBT). India launched another nutritional support programme in 2022, Nikshay Mitra, which offers food baskets worth ₹700. Under this, patients can register on a web-based portal to access information or connect with doctors.

Experts, however, suggest homeless women struggle to navigate this map of TB care. In this map, an insistence on ID cards and bank accounts creates barricades.

Most women without shelter lack documents to show identity proofs, do not have bank accounts and are disconnected from digitised services, says Dr. Sugata Mukhopadhyay of NGO Humana India. Since a majority of homeless people migrate from neighbouring states, “illiteracy rate is very high, and more so for women” who end up working as contractual labour living in shacks. The lack of permanent accommodation, and by extension, identity proof, they struggle to access nutrition services, he suggests.

Bank accounts as a preferred medium for financial support become another hurdle. For one, there are operational challenges within the system: people struggle to link their Aadhaar cards with bank accounts, most accounts lay dormant, others had no online banking, according to a 2021 study. . Among those who manage to procure IDs and open bank accounts, only 66% of beneficiaries under NPY received at least one month’s payment in 2022, a study showed. 

When and if women have individual accounts, patriarchal norms compromise the autonomy women exercise over their earnings, studies show. In Delhi, NGO Humana observed that behavioural habits associated with poverty, like alcoholism, meant husbands used the woman’s money for alcohol or drugs.

In other cases, the money given to the women was used for buying food for the entire family, “not giving special focus to supplementing the nutritional requirements of the women, says Mr. Mukhopadhyay. Food is critical in TB care: at least 55% of new TB cases annually in India are due to poor nutrition, Health Ministry sources said in 2019. Conversely, regular nutritional support, to the individual and the family, could lead to a 39-48% reduction in TB disease, according to the landmark RATIONS trial published in The Lancet recently

“Often, most of the food is consumed by the male members, elders and children. There is hardly anything left for the women.”

Reaching the point of diagnosis, care

Diagnosing TB is challenging for multiple reasons, one being its vague early symptoms. Recurring cough, fever or a low appetite — early signs of the disease — are often quotidian realities for people lving in poverty or without access to good nutrition. And for a woman living on the street, who has no family, the ‘odds are very high’ that she may not reach the point of diagnosis, experts suggest. Moreover, from the day one starts coughing to the day TB is confirmed, the journey is longer, delayed and more arduous for women in comparison to men, a 2018 report showed. A 2023 study in PLOS One showed one-third of TB cases in India go undiagnosed each year, a gap that is “more pronounced among female patients”. Women may also delay seeking help due to a lack of awareness and stigma associated with the disease, as was the case with Reshma.

A TB diagnosis is also prolonged, rarely promising an instant answer. Suspected patients are required to give a sputum sample (a mixture of saliva and mucus from the respiratory tract) and/or undertake an X-ray. Without counselling and privacy, women may feel ‘inhibited’ and ‘shy’ in bringing out sputum in a public setting, thus affecting the quality of the sample and subsequent results. Experts have flagged the efficacy of sputum microscopy in detecting extrapulmonary TB (an infection which affects organs other than the lungs), which is more common among women. The prolonged process and repeated visits may also seem unnecessary to women who may interpret their cough as a natural consequence of, say, living on Jaipur’s polluted roads.

Since 2017, the National Tuberculosis Programme has undertaken active case finding (ACF) outside the healthcare settings among high-risk populations. However, the first report on the strength of active case finding revealed the quality of this process was “sub-optimal nationally”: at the national level, 9.3% of the population were screened, just 1% of the screened were tested and 3.7% of the tested were diagnosed.

The process becomes a punishment, going back more than once for diagnosis, and multiple times for medicines during the six-month-long regimen. Until COVID-19, most centres gave medicines for a week, a way to get people to come back and monitor adherence and side effects. Women already face mobility and financial challenges in seeking healthcare; for someone living on the streets, moving around a city, the odds they can always return to the same dispensary to collect medicines are low, according to an expert. The Humana survey also found treatment literacy and counselling quality for homeless women is lower in comparison to other groups – they were likely to drop off medications once they started feeling better. 

Shortage of anti-TB drugs or stockouts would further deter homeless women, and other vulnerable groups from returning.

Also Read | Research shows India can shorten tuberculosis treatment 

Battling stigma

Civil society organisations find a paradox of knowledge: awareness about TB is still low among homeless populations, but stigma runs strong. Many as a result denied or refused treatment. There was a “sudden disappearance of the newly diagnosed TB patients” who couldn’t be initiated into treatment, a Humana report noted. For homeless women, in addition to the fear of losing daily wage work, there is the risk of social exclusion and abandonment from families and relatives – support systems that are imperative for them to access treatment.

Experts note the stigma and awareness gaps often deter women from seeking timely care. The ASFHR study recommended implementing peer health networks and expanding coverage of evening mobile clinics that reach women – instead of waiting for women to reach health centres. Mobile vans, in parts like Delhi and Jaipur, are equipped with medical professionals and equipment to provide on-the-spot diagnosis and medicines. However, “informed consent, privacy and confidentiality are important [considerations]”, suggests Ms. Srinivasan. A homeless woman might not feel comfortable giving her sputum or undergoing an X-ray in a mobile clinic. “Strengthening these [factors] might increase women’s trust in the health system.”

Building ecosystems of care

To capture homeless women’s experiences means peeling the layers of a social and medical disease, and finding a structurally forsaken group. Course correction would demand a radical shift in how India approaches TB elimination. “You have to look at individual, social, economic, psychological and emotional needs. What TB has taught us is that just looking at the clinical is not enough,” Ms. Srinivasan says. 

The study recommends recognising homelessness and gender in the TB Mukht Bharat programme, legally weaving their rights to health care, drugs and technology under Union and State government schemes.

If a TB patient requires X amount of effort in terms of counselling and tracking, a homeless TB patient would require 2X, and a homeless woman TB patient would require 4X. A strange mathematical equation, but it boils down to this: “Are we willing to invest that time and energy?”

(This story is part of the Dr. Amit Sengupta Fellowship on Health Rights. The survey was conducted by Hemant Mohanpuriya in 2021, during the COVID-19 lockdown.)

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