On World TB Day, a reminder of why treatment needs to be responsive to gender

A couple of years ago, in a meeting, a colleague asked me why we need to consider gender or sexuality in tuberculosis care. “TB can happen to anyone who breathes,” this person said. “Aren’t we all equally vulnerable?”

Yes, TB is an airborne illness and we are all vulnerable. But equally vulnerable? Four countries account for over half the global burden of drug-resistant TB – a form of TB that is resistant to first-line medication and requires stronger medicines. Among them, India leads the tally, accounting for 32% of global cases of drug resistant-TB.

While we are all vulnerable to TB and drug-resistant TB, the extent of vulnerability differs. Socioeconomic determinants such as the lack of access to well-ventilated houses, food insecurity and cultural barriers to healthcare access put some people at a higher risk for TB than their socioeconomically privileged counterparts.

Further, vulnerability to TB varies by gender, sexuality and related cultural barriers in accessing care.

Gender inequities

Women in rural areas hesitate to seek care where female health providers are unavailable. Women in traditional settings may not be allowed to travel without a male companion, and are dependent on others for healthcare access. Their default role as family caregiver often means that they tend to themselves last, in the best-case scenario, and in the worst-case, are unable to tend to their health needs.

Married women affected by drug resistant-TB report being abandoned by their husbands and in-laws after their diagnosis. Some are compelled to consume medication in hiding, given the stigma attached to TB. If you are an unmarried woman affected by drug-resistant TB, the burning question is not, “Will you survive this?” It is, “Who will marry you?”

Meanwhile, LGBTQIA++ persons, given the social stigma they face, may lack access to safe housing, stable income, and nutrition, thus increasing their vulnerability to TB. Further, LGBTQIA++ men, women and non-binary persons face discrimination within the health system on account of their gender and sexual identity.

This is a significant barrier to care-seeking and affects the quality of care LGBTQIA++ persons receive. They are also less likely to have family support during their treatment, given that families often ostracise them for not conforming to heteronormative roles.

For men, anointed as breadwinners by society, a drug-resistant TB diagnosis and its lengthy treatment could lead to both loss of work and wages, affecting their perceived social status. The fear of losing income and status, and TB-related stigma are barriers to seeking and continuing care. Further, substance use that is frowned upon in women, is often encouraged in men as a marker of perceived masculinity, increasing men’s vulnerability to TB.

Gender-responsive care

While the experience of inequities differs based on gender and sexual identity, all persons need care that addresses these inequities, care that is gender-responsive. So, what does gender-responsive drug-resistant TB care look like?

The 2024 version of India’s National Framework for a Gender-Responsive Approach to Tuberculosis is a good starting point. it is a great example of how national TB programmes and affected communities can work together as partners in care and policy design. It outlines what gender-responsive care looks like at different stages of the TB-care cascade.

However, the journey from ideas to implementation in drug-resistant TB care settings is one that national TB programmes must map out. While the path each programme takes will differ based on local context and needs, there are a few things all national TB programmes must ensure to make drug-resistant TB care gender-responsive.

LGBTQIA++ persons, cis women and cis men affected by TB must be engaged as equal stakeholders in defining the care they deserve. This means engaging them as members in government committees where policy decisions are made and involving them as co-architects of gender-responsive drug-resistant TB care interventions. It also means having them co-design gender-responsive care capacity building interventions.

Gender-responsive care capacity building needs to focus on skilling both existing health providers as well as medical students to ensure that gender-responsiveness is woven into the fabric of our health system. Capacity building curriculum should include simulated learning, allowing health personnel to effectively understand how best to provide care in real-world settings.

Finally, a key barrier to designing gender-responsive interventions in drug-resistant TB is the lack of social science and clinical research involving LGBTQIA++ persons. Evidence-based interventions need evidence. To that end, research priorities must reflect the needs and preferences of LGBTQIA++ persons and research must include LGBTQIA++ persons as participants keeping ethical considerations in mind.

If the end is gender-responsive drug-resistant TB care, then the means must be gender-responsive as well. Only then can we have equitable and accessible drug-resistant-TB care.

Ashna Ashesh is a lawyer, public health professional and multidrug-resistant-TB survivor associated with Survivors Against TB, a collective of survivors, advocates and experts working on TB and related comorbidities.

March 24 is World Tuberculosis Day.