There is no interest greater than that of the patient in any healthcare system. If a health system does not recognise and fulfil patients’ needs and safeguard their interests, it fails.
To address and end tuberculosis in India, we must first focus on the common interests of all those affected by TB as a whole. All efforts must focus on benefiting them, easing their experiences and reducing suffering. The best way to understand this is by listening.
We have had numerous successes: the scaling-up of diagnosis and treatment; a robust programme that serves millions and has saved tens of thousands of lives; and an efficient and effectively run system serving the large number of patients. Perhaps our greatest shortcoming has been the absence of the patient’s voice in the programme and subsequent lack of understanding the patient experience of fighting and surviving TB. Too easily we assume their needs, their challenges and expectations. We have at times over-medicalised the disease, as doctors and public health specialists often do. We have forgotten to see it as a human crisis, a gendered crisis, an economic challenge and a social and environmental one as well. Why do voices of the TB-affected matter? Because they break through these perceptions and provide real experiences and needs of those that have survived TB.
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Speaking out
For the first time, TB-affected individuals are speaking up on issues relevant to them, and discussing an analytical framework. Until now patients have been limited to being merely care-recipients. Rarely have we engaged in thinking through, imagining and designing the care they need and want. Such narratives depart from that historical approach and set forth a new and unambiguous agenda — one where the TB-affected take centre stage, identify problems and seek redress. They suggest solutions that can be implemented by the state and the private sector, which is a vital stakeholder in the fight.
While including the usual requirements of accurate diagnosis and appropriate treatment, the advocates move deftly into exploring the social determinants of health, explaining and analysing the critical issues of poverty, hunger, food security, stigma and their impact on TB infection control, diagnosis and treatment. These are critical issues that must be prioritised in the context of patient-centric care.
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The role of the voices of the TB-affected in addressing this disease is unique. Each input is useful and relevant — arising from personal experiences of battling TB and linking it to interventions that could make a difference.
India among other countries have signed up to the World Health Organisation’s ‘End TB Strategy’, which aims to eliminate TB as a public health problem globally by 2035. While complete elimination may take time, what is important is that every single stakeholder is engaged and working to remove the disease from India.
Until recently, few TB survivors or other people affected by the disease have served as public voices for it; partly because of its curable nature, the vertical top-down orientation of efforts for TB control, the persistent stigma of TB, and the lack of funding to support community involvement in TB programming. This is changing.
Role of activism
TB activism is emerging as a vital force advocating services in hard-to-reach populations, mobilising and strengthening community systems. Survivors can play an essential role in creating incentives for political leaders to make difficult and risky decisions, in generating public support for the decisions and holding leaders and service-providers accountable.
Reason for hope
Recent developments in India bring hope — the commitment of the political leadership to eliminating TB; the ambitious national strategic plan 2017-2025; and the fact that you now hear and see TB survivors speaking out. The recent decision to provide direct economic benefits to TB patients is perhaps a transformative move.
It is critical that all stakeholders listen to the voices of the TB-affected. They articulate the most important and missing aspect of our work with TB — what patients think and what they need from healthcare providers. It is more than a patient manifesto. It is a call to action that cannot be ignored anymore.
B ased on the introduction to ‘Tuberculosis: India’s Ticking Time Bomb-The Survivors’ Manifesto’