An invigorating session — Community Consultation on Measuring Stigma — with the support of Stop TB Partnership took place on Day 2 of The Union World Lung Conference in Guadalajara. Speakers for the session included Blessina Kumar and Dean Lewis of GCTA, Ellen Mitchell of KNCV, Abdulai Abubakarr of Civil Society Movement Against Tuberculosis in Sierra Leone, Olive Mumba of EANNASO and Austin Arinze of Afro Global Alliance
Blessina Kumar, CEO, gave a powerful talk on community engagement and stigma associated with TB. Stigma is a huge issue and tops the list of barriers to access. During her session, she reminded participants that stigma stems from a perception and it is linked to how people see the disease – and TB is looked upon as a disease of the poor.
She further highlighted the various forms and manifestations of stigma – from self-stigma to institutionalisation of stigma such as schools, colleges and workplaces that make environments unhealthy and further stigmatise those who are affected by TB. Stigma leads to isolation and is a big barrier to treatment adherence and is sometimes responsible for treatment failure. And to make matters worse, the lack of information about the disease creates fear, she added.
“The problem in the TB scenario today is that while there is talk about drugs, toolkits and everything else, where is the talk about all those people that this is made for?” said Blessina. She further reiterated that if we do not have community in the centre, we will lose the battle. In order to address stigma, we need to have deliberate action in every part of the TB response.
The language used to talk about TB too adds to the problem. Blessina added that in the conference alone, she has lost count of the number of times words such as ‘TB suspect’ and ‘defaulters’ has been used.
She urged all the stakeholders in the TB response to come together and fight the stigma so we can successful end TB globally.
Apart from the talk, it was decided that GCTA will — in the weeks to come — be providing detailed and concrete feedback on the stigma measurement guide to ensure that the document is community friendly and relevant.