It's Time To End TB Stigma To End TB
Launch of the TB Stigma Assessment & Human Rights Training Manual
21 February 2020, Geneva, Switzerland - "We have an opportunity here. In 2018, the world came together for the UN high level meeting on TB and one of the key commitments was to end stigma... If we are to achieve the UN TB targets, ending stigma is key," said Joanne Carter, Vice-Chair The Stop TB Partnership Board as she gave the welcome address at the Stop TB Partnership launch of two important tools to fuel the fight to end stigma and end TB.
The Stop TB Partnership, together with partners at USAID, Global Fund to Fight AIDS, Tuberculosis and Malaria, ACT! Asia-Pacific, Global Coalition of TB Activists (GCTA), TB Europe Coalition, ACT Africa, Americas TB Coalition, DRAF TB from Francophone Africa, TBpeople, KNCV, APCASO, We are TB, REACH India, CISMAT Sierra Leone, and World Health Organisation (WHO) launched on Thursday two tools to support TB affected communities and national TB programs: The Stop TB Partnership's TB Stigma Assessment Tool and the ‘Right to Breathe: Human rights training for people with and affected by TB.’
The United Nations High-Level Meeting (UNHLM) on TB Political Declaration contains clear commitments by countries to end all TB stigma and discrimination, to prioritize the involvement of communities and civil society, and to develop health services through approaches that protect and promote equity, ethics, gender equality and human rights. We now have two new tools to help us do this.
TB Stigma Assessment Tool
Stigma is recognised as the most significant social and rights-related barrier to ending the TB epidemic. TB stigma limits access to services and negatively impacts the quality of life.
"Throughout the TB journey, our community experiences rejection, hopelessness, loneliness, societal shame, broken relationships, self-pity and job losses, all as a result of TB stigma. People avoid accessing TB services as a result of stigma or fear of it. People stop their treatment because of lack of social support and economic assistance. The loneliness, guilt and isolation can lead to permanent mental trauma," said Thoko Nkhoma, African Coalition on Tuberculosis and Affected Community Representative to the Stop TB Partnership Board.
With the TB Stigma Assessment tool, countries can now assess the extent to which TB stigma acts as a barrier to both accessing and providing services and develop costed action plans to address it so that quality TB services are available, accessible and acceptable to all. Most importantly, the TB Stigma Assessment tool will provide a baseline against which countries can evaluate their interventions to address TB stigma.
From L to R: Kathy Fiekert, KNCV, Tereza Kasaeva, WHO, Pastor Paul Brima Bangura, CISMAT Sierra Leone, Elvi Siahaan, ACT! Asia Pacific, Meirinda Sebayang -ACT! Asia Pacific, Thoko Nkhoma, African Coalition on Tuberculosis, Lucica Ditiu, Stop TB Partnership
Right to Breathe: Human rights training manual for people with and affected by TB
Empowering grassroots TB affected communities to understand their rights and to document instances when they experience human rights violations is critical to addressing stigma. The Stop TB Partnership is committed to supporting global, regional and national level TB affected community networks. The Right to Breath: Human rights training for people with and affected by Tuberculosis is a global tool, developed by the Activists’ Coalition on TB Asia-Pacific, together with APCASO and global human rights experts, to build the capacity of grassroots TB affected communities in TB and human rights.
"We have seen the development of the rights-based response to TB with commitments at the highest level and with critical guidance through documents and tools like the TB CRG Assessment and Declaration of the rights of people affected by TB. But my daily work is with isolated island communities, and what we needed, to complement these tools was a way to bring human rights literacy to those grassroots communities affected by TB. We now have that tool – a critical link to empower local communities to engage as actors who can demand an end of stigma and seek remedy when their rights are not respected." said Elvi Siahaan, Co-Chair ACT! Asia-Pacific and Board Member of GCTA.
Lucica Ditiu, Executive Director, Stop TB Partnership, made a call to action, for national TB programs, together with nation TB survivors and civil society, to implement the TB stigma assessment and the Right to Breath at scale. She said: “We have seen high-level political commitments in the UNHLM on TB, calling for a rights-based TB response and the elimination of all forms of stigma and discrimination. Together with our partners, we now have tools that can help countries to achieve those commitments. But this is just a first step – the hard works starts now as we must work together with our partners at the Global Fund, in national TB programs to ensure that these tools are included in TB funding requests and that our TB affected communities are empowered to help us end TB by 2030”.
Click the images to access the respective tools.