TB continues to impact the lives of over 28 lakh people, with 4 lakh people succumbing to the disease each year! Lack of awareness about TB, breeds and reinforces stigma and discrimination that acts as barriers to those who need to seek care
1/5th or 1/6th of the TB patients go undetected and unreported to the TB program
The outbreak of COVID-19 has brought a tremendous change to our lives and our perspective of public health. From making a phone call to stepping out of our homes, there is a constant reminder that there is a virus in our midst and adherence to social distancing norms is imperative for our own safety as well as the safety of our loved ones. When everyone was still trying to understand the situation and reeling under the fear with little information available the government disseminated messages that were straightforward, accurate and could help generate awareness to understand the threat of the novel coronavirus, and the preventive measures needed to protect ourselves and stop the spread of the disease. From mass awareness campaigns led by public representatives, to IVR based call systems - the entire government and public machinery has been geared to address the information gap and inculcate physical distancing and preventive measures among the population along with stigma reduction messages.
This work led by the government in ensuring accurate information reaches the last mile makes me reflect on the many years spent in working with the tuberculosis (TB) community. TB continues to impact the lives of over 28 lakh people, with 4 lakh people succumbing to the disease each year! Despite this, we see, almost each day, how the lack of awareness about TB, breeds and reinforces stigma and discrimination that acts as barriers to those who need to seek care. While TB can happen to anyone, studies show that it is five times more likely to affect the poor and marginalized. In addition to the fear of loss of wages or even employment, it is the fear of being discriminated socially that results in patients from marginalised communities not seeking timely and appropriate care. Even today, we estimate that a fifth or a sixth of the TB patients go undetected and unreported to the TB program - many of them could be seeking care in informal settings to avoid being identified as a TB patient! The critical role and need for information as a result of the pandemic gives us an excellent opportunity to create awareness on TB, a preventable and curable disease.
Ushering in New Interventions to Fight Stigma
Over the last few years, the National TB Elimination Program (NTEP) has been on a mission mode to realize the Prime Minister's vision of a TB free India by 2025. Various critical interventions have been introduced that target improving access to care. While the delivery of quality care is critical, addressing stigma has been recognized as a pivotal step in changing health seeking behaviors. I'm happy to say that over the past few years, we have collaborated with the NTEP with increasing frequency to ensure needs of the patients - both medical and emotional are met. In a first step, we worked with the program to develop a 'Strategy to End Stigma and Discrimination Associated with Tuberculosis' with context specific interventions to end stigma in different settings. The overarching objective of the document is to sensitize stakeholders on stigma and discrimination and provide guidance to a stigma-free TB response that enables India's goal of TB elimination, reduced catastrophic costs, and higher acceptance and utilization of NTEP services.
The introduction of the strategic document is a positive first step towards addressing the stigma around TB and improve treatment outcomes, yet it is important to keep track of the efforts and processes undertaken by the NTEP towards the larger goal to identify the potential and take course corrective measures if required. The NTEP during the implementation of the strategy needs to incorporate and keep in line with the WHO's Multi-Sectoral Accountability Framework and collaborate with various other ministries to ensure awareness generation and stigma mitigation is carried out across the country. One example of the collaborative effort is the communications campaign run by the Municipal Corporation of Greater Mumbai and the Brihanmumbai Electricity Supply and Transport that ran one of the largest mass awareness campaigns the city of Mumbai has seen. Almost every bus and shelter had TB messaging to generate awareness and is estimated to have reached almost all of Mumbai's population.
Along with accurate messaging, a rights-based approach is also crucial in addressing stigma around TB. The Global Coalition of TB Activists (GCTA) earlier this year launched the 'Activating a Human Rights-Based Tuberculosis Response: -A Technical Brief for Policymakers and Program Implementers' focusing around the rights-based approach to provide actionable guidance to policymakers and implementors to usher in a human-rights based TB response by highlighting the right to health, right to dignity among others and explain their content and legal foundations to support policy makers in adopting a more holistic patient centered strategy for TB elimination. Simultaneously, the program also needs to ensure the workplace regulations are implemented properly and a human rights-based approach to our efforts is adopted.
To achieve the ambitious target of eliminating TB by 2025 we need to make sure we reach each and every patient from across the country, a gargantuan task that can surely be done if we are able to instill a sense of security and inclusiveness among those who seek care. The outbreak and spread of Covid-19 has pushed us to think out of the box and convert an adversity into opportunity, an opportunity that we cannot let go of. Every TB patient has the right to information and to high quality rights based care, and we must enable them to access both.
TB Harega Desh Jeetega!
(Ms. Blessina Kumar, CEO, Global Coalition of TB Activists)
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