Mr X had gone in for a routine check-up when their doctor, who without even physically examining them, pronounced they had TB and must get tested. When Mr X tried to show him their existing reports, the doctor shirked them away, stating he might get TB by touching them or their reports.
Why did Mr X receive such spectacular treatment from their care provider, the person they trusted to heal them? Mx X is a transgender person.
Sadly, this is not just Mr X’s story; it’s the story of many people who identify as LGBTQIA++. Time and again, survivors, the media and public health professionals remind us of the deadly statistics accompanying TB in India. TB kills nearly 1,400 Indians every day.
Yet, we often forget the gendered and social context in which TB exists in India. What does that mean? It’s hard for poor people to fight TB but harder still if you are a woman, transgender or gender non-binary person.
Though the bacteria doesn’t discriminate, people always do. As a result, these groups are often faced with poor quality and discriminatory experiences when fighting TB. Thus, TB becomes harder to fight for them due to stigma, discrimination and denial.
This poor public health response to gender minorities is hardly new. Until recently, India did not recognise the third gender or the rights of gender minorities. Health staff in India, in the public and the private sectors alike, are rarely sensitised to gender diversity. They are often fed with myths and misinformation. The result is stigmatising, poor care for those that need it the most.
The failure is with the medical education and the health system itself, which rarely helps health personnel understand the complexity of gender diversity and sexuality. Instead, it stigmatises and excludes them in medical education and does not discourage discriminatory behaviour. This leads to negative attitudes, misinformation and bad care.
This is evident even in the recent gender-responsive frameworks that the government developed. The framing body itself did not include sufficient trans or other gender minorities. What then can be the outcome of such a framework? It stereotypes trans individuals and reduces them to mere offenders. What’s worse, this framework is being celebrated across the health system.
In the process, we institutionalised stigma, discrimination and poor quality of care for these vulnerable groups.
If we want to provide good care to these groups, there is an urgent need for completely rehauling the approaches to TB and other public health challenges to make the system in our country more gender and sexuality literate and sensitive.
The COVID-19 pandemic provides us with the opportunity to revisit and integrate concepts of gender and sexuality into our medical curricula.
Once a year, medical institutions and all health personnel providing TB care in public and private sectors need to go through sexuality and gender learning programs. They need to understand the challenges of working-class women, transgender individuals and economic, social and other contexts.
The system also needs to understand that treatment is not availability and affordability but rather dignified and sensitive approaches to care that do not isolate or breed fear of violence. Further still, women, transgender and non-binary individuals of lower-income groups are more prone to such discrimination violence. Misinformation, institutional isolation and a lack of political will to combat the same worsen the situation.
For women or gender minorities fighting TB, everything from awareness, diagnosis, treatment, support and nutrition are challenges. In a publication called Nine Lives, nine such Indian women recount their fight against this gendered disease.
India needs to urgently revisit its misguided gender-responsive framework on TB that was published by the Ministry of Health and Family Welfare in 2020 that failed the LGBTQIA+ population. The framework does not recognise and include the specific health needs and challenges of non-normative identities.
Gender-sensitive care needs to go beyond tokenism. Gender diversity needs representation in policy drafting committees and for the government to hold public discussions and listen to the community. The national TB elimination goals cannot be met until the gendered reality of the TB crisis is actively addressed.
This will start by making a change in policy and frameworks, transforming mindsets within the system and earning the community’s trust. The government needs to have an open dialogue with grassroots organisations and work with them for community-led awareness, stigma mitigation and creating policy and programs that address the needs of gender and sexuality minorities.
By Ashna Ashesh and Vashita Madan
Ashna Ashesh is an MDR TB survivor, lawyer and public health advocate. She is a Fellow associated with Survivors Against TB, a collective of survivors, advocates and experts working on TB and related co-morbidities.
Vashita Madan is a writer and works in public health and communications, also associated with SATB.