“Survivor representation” and “community engagement” have of late become buzzwords in the national and international tuberculosis, or TB, policy and advocacy landscape. Yet, few know what these words really mean.

The ideal of TB survivor and community engagement, which in the Indian context was recognised by the survivor-led collectives such as Survivors Against TB, was to ensure that TB policy was informed by the experiences of affected individuals, survivors and communities.

What such collectives intended was a substantive engagement of survivors and affected communities in rethinking, redesigning and monitoring TB care policies and services to make them responsive and effective. This was, in its purest form, a participative and collaborative process built on the bedrock of seeking accountability.

Why was this important? Health services, like any other service, are only useful if they address the needs of the end user. TB services are no different and are effective only when they are informed by and respond to the actual needs of patients.

In TB, who better to identify those needs than survivors and affected communities, who have the lived experience of surviving TB, and know the needs of patients. This is why it is critical for TB survivors to not just be at the table but have a seat, a clear perspective and voice at the table. Only then can TB care be effective in responding to end user needs.

Reduced to tokenism

As always, reality is quite different. What should have been a seat at a table has now been reduced to a token five minutes on the mic at TB-related events and policy meetings. Survivors are routinely and predictably forced to mouth the same platitudes, praising improvements and services and lauding the commitments made, but with little evidence of changes on ground zero.

To add insult to injury, survivor and community engagement is not seen as a value add, and neither are survivors compensated for their expertise and time. Some stakeholders have even gone so far as to refer to TB survivors as “resources”.

What they do not mention is that these resources are viewed as affordable labour at the grassroots to motivate communities without any real thought out strategy to do so.

Hence, poorer affected communities, who are paid minimally, become harnessed labour in efforts at controlling TB. It could be a new kind of atmanirbhar model except it seems more like a sweatshop.

TB survivors have been reduced to afterthoughts, quota fillers or affordable labour resources to be exploited in India’s efforts to eliminate TB. They should be the epicenter of designing policy, with effective experience and community knowledge, but the truth is far from it.

TB survivors are not resources. They do not exist just so advocacy organisations or TB programmes can tick off the box of survivor representation and community engagement. They are veterans with lived experience that can and should be used to guide and shape TB care and services. They are active bearers of agency and they need to be provided with platforms conducive to enabling the exercise of this agency.

A photo exhibit of TB survivors at Central Park at Connaught Place in New Delhi, in this photograph from March 2020. Credit: TB Harega Desh Jeetega via Twitter.

Survivors’ experience central

We need a paradigm shift in how we view the role of TB survivors and affected communities in eliminating the disease. TB survivors and affected communities need to be substantively involved in the design of TB care, policy and advocacy campaigns as architects, not passive observers.

They should not simply be asked for post facto feedback, but be active participants in designing care, policies and campaigns both at the national level and in programs from the stage of inception. Ethically, a project without survivor input should not be considered complete.

Further, it should be essential to have them be part of every government and or project committees or advisory boards in advocacy organisations. To facilitate better accountability, they also need to be given the power to hold stakeholders accountable.

TB survivors need to be accounted for in all agendas, not merely included to tell a sob story. While we realise the power of storytelling, it is only valuable when the story is employed to empower and offer lessons. The sob story, which is often what TB survivors are asked to focus on to the exclusion of all else, including their valuable inputs, empowers nobody.

Surviving TB is gruelling and there are moments of helplessness but there is learning in these survivor experiences that we can use to redesign TB care in India to make it accessible and equitable. That is why we call them survivors – they tell us what we need to survive TB.

Finally, meaningful survivor and community engagement is incomplete unless it is diverse, inclusive, and on equitable terms of engagement. We need to include TB survivors with diverse backgrounds, and ensure marginalised groups such as the LGBTQIA++ community and people with disabilities are adequately represented.

A good starting point for equitable representation, would be to start compensating TB survivors fairly for their time and experience, like we would any expert for their services.

Meaningful TB survivor and community engagement is difficult but it is essential to improve TB care services. Because if we do not listen to, learn and redesign TB care for those who need it the most, we need to ask ourselves – who exactly are we eliminating TB for?

Ashna Ashesh is a lawyer, public health professional, and MDR-TB survivor. Chapal Mehra is a public health specialist who works extensively in the areas of infectious diseases like tuberculosis and HIV. Both are associated with Survivors Against TB – a collective of survivors, advocates and experts working on TB and related co-morbidities.

World Tuberculosis Day is observed on March 24.

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