Women and TB in India: a story of deprivation, discrimination and debt

Rekha (named changed) doesn’t like being photographed, has no close friends, and is not on social media. This wasn’t the case a few years ago though.

In 2020, Rekha was diagnosed with tuberculosis (TB), having contracted it from her father, who died two years later of the disease. Following the diagnosis, treatment, and cure, the now-28-year-old survivor says, “My diagnosis changed my life forever. The stigma attached to TB runs deep. I don’t know if any person other than my own family will accept me.” She adds that her close friends abandoned her, and her relatives, fearing shared financial responsibilities vanished. She has made the decision never to get married. Rekha adds that not being married at the time of her diagnosis and treatment was a real blessing. “It would have complicated and hampered my diagnosis, treatment, and recovery,” she explains.

Rekha’s TB story isn’t unique in India. Here, women consistently face life-altering discrimination and stigma following a diagnosis.

Currently India bears the world’s highest tuberculosis burden, accounting for over 25% of global cases, with an estimated 2.7 million new infections and over 3 lakh deaths in 2024, as per the World Health Organization’s (WHO) Global TB Report 2025. The incidence dropped by 21% from 2015 to 2024, nearly double the global decline rate. The report states that 54% of people who developed TB in 2024 were men, 35% women, and 11% were children and young adolescents.

Social, emotional impacts

Blessina Kumar is a health activist and public health professional with over three decades of experience working with diverse communities across India. “While men carry the larger burden of TB, data alone doesn’t tell the entire TB story in India,” she says.

Education and financial capacity do not always protect a person from stigma: a TB diagnosis can adversely hit even highly educated, financially independent Indian women, she says. “We worked with a young woman physician from Maharashtra who was married and had enrolled for her specialised medical degree, when she was diagnosed with TB. Overnight she was abandoned by her husband, while the disease took a toll on her physical and mental health. She couldn’t continue her studies. It took her a few years to get her life back on track,” shares Ms. Kumar. She says very few women, including this doctor who is now a practising paediatrician, are willing to talk about their diagnosis in public.

For women, TB brings to the forefront questions about human rights and a woman’s ability to make decisions about their own lives. Adequate nutrition, access to monetary resources, fear of social isolation, and hesitation to seek medical care are issues that most Indian women grapple with, Ms. Kumar explains. Alongside the actual disease, Indian women also fight delayed diagnosis, disrupted treatment and almost no mental health support. Ms. Kumar points out that despite the wins in TB elimination, the country has been able to achieve, women and their multi-fold problems persist.

Misdiagnosis, late diagnosis

Speaking about what doctors often encounter when dealing with female patients, Alpa Dalal, head of pulmonary medicine, Jupiter Hospital, Thane, explains that women often hide their TB symptoms, which leads to misdiagnosis and even death.

“The social stigma attached to TB reduces their marriage prospects. Married women face the danger of being abandoned by their husband and in-laws, and not getting any financial help for treatment and care. Women are also often expected to continue with their daily household work despite the disease, and if they get pregnant during treatment they often stop medicines fearing the side-effects on the foetus,’’ says Dr. Dalal.

Doctors indicate that besides the socio-economic impact, women may experience TB differently from its typical manifestations and this has consequences for how TB is detected and treated. Evidence indicates that pulmonary TB can manifest differently in women, often leading to non-specific presentations such as fever and fatigue. As a result, women may not always exhibit the classic markers doctors associate with TB. Medical professionals who rely on verbal screenings are less likely to suspect women of suffering from TB when they initially reach out, contributing to further diagnostic delays.

Data from WHO’s 2025 Global TB Report also shows that a higher proportion of men in India are diagnosed using bacteriological testing methods, whereas women are more likely to be diagnosed clinically, i.e., verbal symptom-based screening or using a chest X-ray without a confirmatory test. The male to female ratio of bacteriologically confirmed adult TB cases detected in India is 3:1.

Issues in diagnosis are further compounded by the reality that women are more likely than men to suffer from certain forms of extrapulmonary (non-lung) TB. While this form of TB is non-infectious and hence overlooked in global TB prevention programmes that primarily focus on transmission control, it can be debilitating.

One particularly concerning form, genital or reproductive tuberculosis, presents symptoms such as subfertility or menstrual irregularity, which are rarely associated with a typical TB diagnosis. Diagnosis and management of extra pulmonary TB (EPTB) can thus be a problem given the non-specific and atypical symptoms. In 2023, EPTB constituted 24% of the total notified cases and is generally more prevalent in immuno-compromised people.

Healthcare-seeking

Public health professionals say that in India, a woman’s lack of autonomy restricts her decision-making power and access to resources, including healthcare. Nutritionally too women face a double burden: gender disparities in food security combined with higher nutritional needs during pregnancy, lactation, and menstruation, make adolescent girls and women of reproductive age especially vulnerable to malnutrition.

Doctors explain that undernutrition significantly increases women’s vulnerability to TB. Undernutrition is recognised as the leading comorbidity among all people with TB in India.

Women’s health is often de-prioritised in the family unit making it difficult for them to leave their households and seek professional help. “In India the compounded effects of gender roles, restricted mobility, and an overall lack of awareness places women in a position of vulnerability that is nearly impossible to escape,’’ says Dr. Dalal.

For Meera Yadav, the cost was one lung. The drug-resistant TB survivor recalls the severe coughing, high fever, and chest pain she had 13 years ago. She was finally diagnosed with MDR-TB, but delays in proper testing and limited awareness made her recovery journey difficult.

“I faced severe stigma and discrimination from my family, who isolated and abandoned me instead of offering support. The emotional trauma was as painful as the physical suffering. Due to extensive damage caused by the disease, I lost one lung,” she says, adding that her treatment lasted until 2018. She is now a strong TB activist advocating for patient rights and better access to care.

“There is a need to meaningfully engage TB survivors in programme implementation. Survivors can play an important role in providing mental health and psychosocial support,’ she says.

Government initiatives

The government in 2019 formulated a gender-responsive framework of TB prevention and diagnosis. Its recommendations called for immediate attention and implementation by stakeholders, including the TB programme, frontline workers, and survivor networks.

“The Ministry of Health and Family Welfare launched the TB Mukt Bharat Abhiyaan on December 7, 2024 and among other innovative strategies, is heavily relying on AI-powered chest X-rays to screen asymptomatic TB, also called sub-clinical TB, among high-risk groups, such as the elderly, people living with HIV and diabetes, among others,” says a senior health ministry official.

Gaps need addressing

Diagnosis issues apart, gaps in treatment continue to plague the system.

As per the 2025 India TB Report, management of EPTB is primarily available at tertiary centres and medical colleges.

Moreover, healthcare providers often do not have up-to-date information on the latest way EPTB is managed. In 2023, the programme developed a training module on extrapulmonary TB. Training healthcare providers to identify non-lung TB at earlier stages will be critical to improve management of this type of TB.

Post-TB complications can also worsen due to late diagnosis. Nearly 50% of survivors develop long-term lung complications, points out Vikas Mittal, director – pulmonologist, CK Birla Hospital, Delhi. Many continue to experience persistent breathlessness and chronic cough even after completing treatment, a condition known as post-tuberculosis lung disease (PTLD). Survivors are also at increased risk of developing chronic obstructive pulmonary disease (COPD), even if they have never smoked. “Late detection can result in more severe lung damage and higher risk of post-TB complications,” he says.

Doctors also explain that women in India have poorer immunity when compared to men, due to lower muscle mass, high incidence of anaemia, poor health-seeking behaviour, unhealthy nutrition and eating habits, and emotional suppression and neglect by family. A comprehensive approach to prioritising and tackling women’s health right through their lifespans could go a long way towards combating the TB burden while also ensuring a healthier future for new generations.

Kuldeep Singh Sachdeva, chief medical officer at Molbio Diagnostics said that women often neglect their symptoms and face difficulty accessing healthcare on their own. However studies have shown that wherever the health system makes a conscious effort to reach women you get more cases compared to expected cases as per the current estimates.

Dr. Singh adds that point of care diagnostics can uncover many hidden cases in women thereby decreasing unnecessary suffering and deaths.“Empowering women in negotiating long pathways to cure will benefit the health system in the long run and improve the overall health of the community,” he said.

Molbio Diagnostics, offers rapid molecular diagnostics and is known for its WHO-recommended Truenat platform, which enables accurate, point-of-care TB and drug-resistant TB detection within hours, even in remote, resource-limited settings, strengthening early diagnosis and treatment across India and high-burden countries.