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The UNITE4TB Community Advisory Group: Voice of the TB community
A core body within UNITE4TB is the Community Advisory Group (CAG), established to ensure meaningful engagement with people affected by tuberculosis (TB) so that the views of the TB community are heard and considered throughout the project. The group comprises members from across the world with lived experience of TB and/or proficiency in working with TB communities.
In addition to UNITE4TB project partners from the European Lung Foundation (ELF) and TB Alliance, the CAG consists of representatives from the Global Coalition of TB Advocates, the Global TB Community Advisory Board, the TB Europe Coalition, Stop TB Partnership Tajikistan, EU PEARL, TBEC, and the European AIDS Treatment Group.
Commenting on the added value of the CAG for UNITE4TB, Pippa Powell from ELF (CAG lead), said: “It’s essential that members of the TB community are centrally involved in the UNITE4TB project right from the start, ensuring that the views and insights of people living with TB and their families and advocates are heard and acted upon. We are absolutely delighted to have representatives of key TB community and advocacy groups as part of the UNITE4TB CAG. Everyone is excited to learn more about what impact the project could have and how we can work together to achieve it.”
Progress to date
So far, the group has held two virtual meetings and met face-to-face at the UNITE4TB Annual Meeting in Munich in May. During the Annual Meeting, two members of the CAG gave a presentation to introduce the group and explain how they will contribute to the project. They also made use of the opportunity to stress the importance of using appropriate language when referring to people with TB. For example, in order to break down some of the stigma associated with the disease, the advice is not to use words such as ‘sufferer’ and ‘patient’. The presentation was well-received by the project members and several arranged for the CAG to provide input into their part of the project.
CAG member Blessi Kumar, CEO of The Global Coalition of TB Advocates, also took part in a panel discussion titled ‘From clinical trials to access’. She emphasized the need to work collaboratively with TB communities to ensure the project reaches those who will benefit the most. Blessi commented: “It is very encouraging to see this promising innovative initiative that could make the world of difference for people affected by TB who struggle to get the right medications in the right combinations at the right price. This project gives people affected by TB hope!”