Stop TB Partnership launches the TB Stigma Assessment Tool

The Tool aims to assess the extent to which and how TB stigma acts as a barrier to accessing services and to support the development of recommendations to address TB stigma so that quality TB services are available, accessible and acceptable to all.

9th December 2019: It’s Human Rights Day tomorrow so we are especially proud to show our commitment to a people-centered, human rights-based approach to ending tuberculosis (TB), by announcing that the Stop TB Partnership’s TB Stigma Assessment Tool is now finalized and ready to use!

Everyone has a right to adequate health and to be free from fear, period. Yet every day because of TB stigma, millions of people with TB around the world, often those who are already vulnerable and marginalized, are shamed and shunned and miss out on opportunities for accessing care. TB is a curable disease, but stigma can make people with TB go underground, hide their condition, and delay getting tested. Without treatment, they can pass the disease to up to 10-15 other people within a year, and they will likely die themselves. It’s simple – TB stigma puts lives at risk and unless we end it, we can’t end TB.

TB stigma manifests itself differently in every country. If we want to end TB stigma, we must first recognize why, when and where it happens, and understand the impact it has. The Stop TB Partnership TB Stigma Assessment tool will help countries to do just that.

Working closely with TB communities and experts, and supported by USAID, the Stop TB Partnership led the development of a clear and practical methodology to identify TB stigma in different settings, and measure its impact as a barrier to accessing TB care. Informed by the data gathered using the tool, countries and their national TB programs will then be better equipped to develop targeted health and human rights actions to address stigma.

“TB stigma is a huge issue facing our communities,” said Timur Abdullaev, representative from TB Affected Communities on the Board of the Stop TB Partnership, “so we are very excited to finally have a standardized instrument to measure and respond to it."

Stigma indicators have also been recently included in the Global Fund Modular Framework (a structure to track and measure the progress of country programs funded by the Global Fund to Fight AIDS, Tuberculosis and Malaria). Now using the Stop TB Partnership TB Stigma Assessment Tool, countries supported by the Global Fund will be able to more accurately report back on TB stigma, making the planning of anti-stigma actions easier and more efficient.

“The Stop TB Partnership ensured that the development of The TB Stigma Assessment tool was an inclusive and iterative process”, said Abdulai Abubakarr Sesay, TB Survivor and Executive Director, Civil Society Movement Against TB Sierra Leone. “They recognized the right of TB communities and TB stigma and human rights experts to participate in its design and development, and we will continue to drive the assessment at country level.”

The Stigma Assessment Tool was launched today at the strategizing meeting of the Civil Society Delegations to the Board of the Stop TB Partnership, in Jakarta, Indonesia - a pre-Stop TB Partnership Board event, hosted by Lucica Ditiu and the Stop TB Partnership, with delegates from TB civil society, TB survivors, the Global TB Caucus, The National TB Program (NTP) of Indonesia, the STP Communities and NGO Delegations, and Stop TB Partnership Indonesia, plus our friends from IFRC and local TB organizations.

Throughout December partners from countries around the world will host more events led by their TB communities to raise awareness about TB stigma and showcase the TB Stigma Assessment Tool. Then, in early 2020 the Stop TB Partnership will carry out a TB stigma solidarity event at the Global Health Campus in Geneva alongside TB affected communities and other high-level stakeholders, to urge the world to unite against TB stigma.

“Now there are no more excuses”, said Dr. Lucica Ditiu, Executive Director, Stop TB Partnership. “Communities built the momentum, Heads of States committed to ending stigma at the UNHLM on TB, the Stop TB Partnership with partners and communities affected by TB produced the stigma assessment tool, and the Global Fund to Fight AIDS, Tuberculosis and Malaria has created opportunities to invest in ending stigma. All the ingredients are there, it is now up to all of us to get to work and follow through.”