“Empower civil society and community representatives to generate change from the bottom up”, this is one of the key messages we took away from a session organised by the TB Europe Coalition and WHO Europe on “Community-driven solutions to the MDR-TB epidemic in the European region” at the Union Conference in Barcelona. Indeed, as civil society speaks the language of the people affected by the disease, and is well placed to take over numerous functions at the local level such as case detection, patient support, prevention activities, especially targeting affected communities, its capacities should be strengthened. There is no doubt that by providing basic services, making patients’ voices heard and spreading awareness about TB, civil society can be of great added value to national efforts.

Speakers from civil society from Tajikistan and Moldova as well as the National TB Programmes of Bulgaria and Russia presented best practices in the involvement of communities and civil society in TB care. It was widely agreed that a clear shift from perceptions of TB as a medical condition to a human and social problem was urgently needed, especially in the way that conferences and trainings are organised for medical and programme staff. An equal amount of training in the social aspects of the disease should be provided to TB professionals. This evolution should allow for treatment to become more patient-friendly and for a greater dialogue between TB programmes and affected communities which would ultimately lead to better treatment outcomes. This would also have potential to reduce stigma, a real issue that many TB patients still face and that undermines early diagnosis.

As highlighted by Nonna Turusbekova from the TB Europe Coalition, in the European region advocacy strategies are undermined by a lack of funding which prevents civil society from making its voice heard and that of TB patients. What is of additional concern is that the links between civil society and governments remain weak at national and local level, even if there is greater interaction at the regional level with the recent creation of the Regional Collaborative Committee on TB, which is chaired by a regional civil society network. As civil society depends on waning donor support, essential TB initiatives are threatened in their sustainability.

Dr. Tonka Varleva, the National TB Programme Manager of Bulgaria noted that Global Fund support allowed Bulgarian NGOs to raise their profile and become respected members of the national programme working to combat TB. NGOs are now contracted by the government to ensure that affected communities receive adequate TB care and support. In fact, the Bulgarian system has been held in high esteem as it integrates home-based care into its model. Nurses travelling to remote and isolated communities has allowed for TB rates to be reduced in those problem areas particularly. Nationally, the result has been the halving of TB incidence rates in the country.

Dr. Teresa Kasaeva of the Russian National TB Programme recognised that civil society has far greater access to patients than the government. Some pilot projects implemented by civil society in different regions have proved very successful and the NTP is considering greater involvement of civil society in its approach. Dr. Kasaeva also recognised that the social aspects of TB are as important as the medical aspects.

We also had the opportunity to hear the story of a former MDR-TB patient from Tajikistan, Safar Naimov. It is worth noting that Tajikistan is a very special example as a mountainous country which relies on country-wide networks of volunteers to raise awareness about TB and detect cases. This system allows for ambulatory care to be provided to those residing in the remotest parts of the country. It is hoped that the newly formed STOP TB Partnership Tajikistan will help turn the TB tide in the country.

A positive lesson was also learnt in Moldova where the formation of a civil society coalition substantially facilitated cooperation among NGOs and helped them have a stronger stance in TB care in the country. Lilian Severin explained that joint efforts raise donor and government trust in the abilities of civil society to undertake activities related to TB care. The work of the NGO AFI (Act for Involvement) in Moldova’s breakaway region Transnistria also helped start discussions on human rights. As NGOs began offering support to TB patients in Transnistrian jails, greater links were also built between these organisations and the authorities.

During the debate we learnt that Kazakhstan has begun contracting NGOs to run TB projects, thus allowing these organisations to work in the areas where they enjoy a comparative advantage. However, as recognised by Kazakh delegates, civil society remains weak in many post-Soviet states and it is difficult to involve NGOs in those contexts where they are either scarce or lack sufficient capacities. Uzbekistan has sought to adjust to these circumstances by working at the community level and funnelling funds into local community governance structures.

Many useful approaches to enhancing civil society involvement in TB control activities and ensuring that greater links are built between patients and governments are being documented and will be put online on this website very soon!