Defining the research agenda to measure and reduce tuberculosis stigmas

Abstract

Crucial to finding and treating the 4 million tuberculosis (TB) patients currently missed by national TB programmes, TB stigma is receiving well-deserved and longdelayed attention at the global level. However, the ability to measure and evaluate the success of TB stigmareduction efforts is limited by the need for additional tools. At a 2016 TB stigma-measurement meeting held in The Hague, The Netherlands, stigma experts discussed and proposed a research agenda around four themes: 1) drivers: what are the main drivers and domains of TB stigma(s)?; 2) consequences: how consequential are TB stigmas and how are negative impacts most felt?; 3) burden: what is the global prevalence and distribution of TB stigma(s) and what explains any variation? 4): intervention: what can be done to reduce the extent and impact of TB stigma(s)? Each theme was further subdivided into research topics to be addressed to move the agenda forward. These include greater clarity on what causes TB stigmas to emerge and thrive, the difficulty of measuring the complexity of stigma, and the improbability of a universal stigma 'cure'. Nevertheless, these challenges should not hinder investments in the measurement and reduction of TB stigma. We believe it is time to focus on how, and not whether, the global community should measure and reduce TB stigma. K E Y W O R D S : discrimination; human rights; social justice; respect; equity TUBERCULOSIS (TB) STIGMA is beginning to receive some well-deserved attention at the global level. 1 'Zero suffering' is one of the three goals of the World Health Organization's End TB Strategy, and reference to stigma is common in key implementation documents. 2 The Global Fund has declared TB stigma to be among the most commonly identified barriers to fighting the epidemic, 3 and United Nations agencies have called for an end to discrimination in health care. 1 Many experts believe that it will be difficult to find the estimated 4 million missing TB cases without addressing TB stigma. 1,4 Experts also believe that the full potential of new drugs and regimens for multidrug-resistant TB (MDR-TB), paediatric TB and latent tuberculous infection (LTBI) cannot be realised without addressing TB stigma. Increasingly, countries using Global Fund support are attempting to reduce TB stigma and discrimination across and within elements of their TB programmes. However, Correspondence to: Ellen M H Mitchell, Evidence Team, KNCV Tuberculosis Foundation,