It was April 2017 and 30 tuberculosis (TB) survivors were participating in a lively group exercise at a workshop in New Delhi. They were identifying barriers that people with TB — like themselves — commonly faced in accessing health information and services. Each TB survivor brought his/her own personal experience to the discussion — the difficulties in getting a clear diagnosis, doctor-shopping, the lack of information on what the treatment involved, having to deal with side-effects, the loss of income, to name a few. While TB had impacted each of their lives differently, they were all unanimous in identifying one cross-cutting barrier — stigma and its assiduous companion, discrimination.
In the two years since, the team at REACH, an organisation working on TB since 1998, has witnessed similar scenes play out at other workshops around the country. Over 300 TB survivors from across India — all of whom attended trainings to help them become powerful TB champions and advocates — described stigma as an impenetrable barrier in accessing TB services.
Landmark years
In many ways, TB has never been more visible than before. The years 2018 and 2019 have been landmark years in the fight against TB, globally and in India, with the first ever High Level Meeting on TB held at the United Nations last year. In India, there is high political will and commitment to end TB, budgets are slowly increasing, new social support schemes have been announced and TB survivors are speaking up. There is a lot of talk of ‘ending TB’ and the ambitious phrase — TB elimination — has entered our lexicon.
But as yet another World TB Day comes around on 24 March, it is important to keep reminding ourselves that we cannot win the fight against TB without ending stigma and discrimination. And we cannot end stigma and discrimination if we do not improve public understanding of TB — that it is curable, that pulmonary or lung TB spreads through air, that a person with TB becomes non-infectious soon after starting treatment and that extra-pulmonary TB (TB that affects parts of the body other than the lungs) is not infectious. Even as the government steps up investment in new tools and strengthens service delivery systems, we must make sure that stigma and discrimination are not left out of global, national and local plans to end TB.
Impact of stigma
The impact of stigma extends beyond the shame, fear and guilt that a person with TB can feel. As many TB survivors have told us over the years, stigma is often self-directed and internalised, drawing on social misconceptions of TB. This is especially true of women with TB, who bear the brunt of criticism from their families and whose biggest fear is of infecting their children. TB is a curable disease yet the impact of stigma can be long-lasting, often resulting in the breakdown of relationships. Stigma can be more devastating than the disease itself.
From the health system’s perspective, stigma is a powerful deterrent at every step along the care cascade — the pathway from when someone develops symptoms of TB to until after they are declared cured. Stigma can prevent someone with symptoms of TB from accessing services — we have seen that the fear of being diagnosed with TB often outweighs the anxiety associated with feeling ill or in poor health. Stigma and discrimination also come together to inhibit someone with TB from continuing their treatment or seeking preventive therapy for their family.
Last year, REACH initiated the first ever Legal Environment Assessment of TB in India, an exhaustive exercise to understand how TB interacts with the law and with human rights. Survivors of TB and their family members interviewed for the LEA brought up the overt and covert ways in which stigma and discrimination play out — young women thrown out of their homes by husbands and families, children with TB physically isolated in school or prevented from sitting in the classroom, subtle ostracisation by co-workers at the workplace and discrimination by healthcare workers at health facilities in both the public and private sectors, among others.
As the LEA report recommends, adopting a rights-based, community-led, gender-sensitive and person-centred approach is central to reducing stigma and discrimination. This means ensuring that all persons with TB receive respectful and high-quality treatment, including adequate information about TB and counselling. For this, we need to sensitise healthcare providers to issues faced by those with TB and ensure they act in a non-discriminatory manner. We must provide both treatment and legal literacy to people with TB, so that they understand their rights and can speak up if these are violated.
Champions
Most of all, we must continue to empower and centre-stage TB survivors and champions to speak up boldly about their TB stories. Like Arti and Jagannath, for instance, who were both battling TB for over five years, running from one doctor to another and struggling to raise their young children. They were also dealing with fraught relationships and with the social shaming and isolation by their respective families. Today, they are both proud to be TB champions, at the forefront of the response to TB in their communities. As Arti says, for the people in her area, she’s now ‘TB-wali madam’, and it’s a label she is proud of.
As more champions like Arti and Jagannath speak up, we must develop a robust system to ensure that they not only have a seat at the table but also have a say in decision-making that impacts the everyday lives of those living with TB. It is the active involvement of these TB survivors and champions that can give an impetus to our collective efforts to improve public understanding of TB, reduce stigma, prevent discrimination and end TB in India.
(The author is Deputy Project Director at REACH, a Chennai-based non-profit organization dedicated to the fight against TB for the last two decades.)
