Improving capacity of TB-affected community on TB services and human right issues

by Vu Ngoc Hoa, SCDI – Viet Nam

TB remains a highly medical issue in Viet Nam. People affected by TB have very little information about it: from TB symptoms, prevention, treatment, and care. People showing symptoms mostly go to the pharmacy to buy medicine without proper consultation. In some cases, they go to the hospital but only to receive improper treatment. As a result, many cases turn to MDR-TB or face serious side-effects. Consequently, family members or people who have close contacts are also affected and are not advised to go for TB screening.

We from the Centre for Supporting Community Development Initiatives (SCDI) hopes to break this chain. By empowering people about TB, they can decide and demand to acquire much-needed treatment and care. With the support of the Stop TB Partnership’s Challenge Facility for Civil Society (CFCS) Round 9 through APCASO’s Right to Breathe Project, we implemented a project titled “Improving Capacity of TB-affected community on TB services and human right issues”, with a goal of building the capacity for community-led organisations led by TB-affected community to increase their engagement in the promotion of CRG in the TB response in Viet Nam. This project has two objectives: (1) increasing the knowledge and understanding on TB, and (2) strengthening the capacity of TB-affected community to engage in policy advocacy and decision-making process.

Under this project, we rolled out the Right to Breathe TOT Training Workshop in Viet Nam through 12 virtual training and mentoring sessions among 29 TB-affected community leaders from 12 organizations, including the Viet Nam Community Network for TB Control (VCTB). We also plan to publish a series of articles on issues experienced by people affected by TB in the country, which will then be disseminated through the “End TB Magazine”. This magazine will include updates on TB-related knowledge and policies in the country, activities by NTP as well as local TB community partners of SCDI, and articles and news around community, rights, and gender (CRG) in relation to TB. This magazine will also feature a TB Q&A 101 section and will have conversations with National TB Programme (NTP) managers, doctors from lung hospitals, and other relevant ministries. Most importantly, the End TB magazine will feature 11 stories of people affected by TB themselves, which will give a public face to the TB epidemic in the country – stories that were usually only shared within private health facilities.  

While the ongoing COVID-19 pandemic has severely delayed the implementation of some of our activities, we hope that this project will contribute towards the improvement of access to TB services by those most affected by TB in the community. Through our project, we hope that fellow community-based organizational members, especially those who participated in the training program, have been equipped with knowledge of TB, TB services and policy, and the empathy to understand TB beyond being a disease or infection. This increased capacity will help them solve issues related to accessing TB services, in supporting TB patients and families, which they might find impossible before.