TBEC agrees with the Regional Collaborative Committee on TB, hosted by the WHO Europe Office, on definitions of civil society and affected community as stated in the Fact Sheet on Engaging civil society and affected communities in the fight against tuberculosis in the WHO European Region.

TBEC believes that civil society refers to the wide array of nongovernmental, not-for-profit and voluntary organisations that have a presence in public life. These include non-governmental organisations, community groups, faith-based organisations, foundations, advocacy groups and networks of people living with diseases. The affected community refers to people living with, and affected by TB, including people at high risk of infection and those who bear a disproportionate impact burden, such as key affected populations.

TBEC strongly believes that civil society organizations and affected communities are key players in responding to disease epidemics. Being embedded in communities, CSOs are often well placed to take on operational roles in detection and patient support. They can also advocate for the interests of their members and play an integral role in reducing stigma, promoting social and structural changes and mobilising resources. The in-depth knowledge of local contexts, places CSOs in a strong position to raise awareness of TB among the general population and groups most affected by the disease.

Stigma continues to be an issue in TB, with affected people commonly experiencing disease-associated discrimination or being shunned by their communities. Fear of discrimination can result in delays in seeking treatment and increase the chances of co-infection. CSOs can help combat discrimination by accessing hard-to-reach communities and groups, with community activists who carry out social mobilisation activities becoming trusted by patients, communities and vulnerable groups. Appropriately trained CSOs can also be service providers for vulnerable groups, for instance through providing directly observed therapy services in ambulatory settings and ensuring treatment adherence by offering social and psychosocial support to TB patients and their families.

Furthermore, CSOs and affected communities can also be outspoken advocates on TB. CSOs have the potential and moral obligation to demand action to solve problems people face at local and national levels. They have the ability to leverage greater political commitment on given issues and can help mobilise additional financial and technical resources to boost the fight against TB. Affected communities are crucial to addressing the human and social dimension of TB. Their understanding of issues, such as the barriers in accessing TB care and the obstacles to completing treatment, can lead to better and more patient-friendly TB programmes being developed.

TBEC aims not only to promote overall understanding of the affected communities and civil society’s role in TB response, but also identify the overarching thematic priorities TBEC should focus on its advocacy efforts and activities. According to TBEC Strategy 2017-2021, TBEC has identified three overarching thematic priorities for the region – domestic financing, people-centred TB policies and TB R&D and equity in access to existing TB tools.

Domestic Financing

As the economies of the region are growing, many countries in the WHO Europe region are gradually becoming ineligible for donor support to national health systems. However, increases in GDP are often not accompanied by an increase in health spending, as a result TB and HIV programmes and services targeting vulnerable groups and key affected populations can experience a dramatic decrease in financial support. There is  a substantiated worry that that the progress made so far in the TB and HIV response will be lost due to a lack of political will and financial commitment. TBEC aims to address the issue by carrying out advocacy activities towards the Global Fund, the EU, and WHO among to either prevent or lessen the impact of a poorly planned and timed transition and, by providing information on the latest funding opportunities available to civil society in the region.

To learn more about funding opportunities in the region, please read our brief.

To learn more about transition period in the region, please read our brief.

People-centred care

Traditionally, individuals with TB in many Eastern European and Central Asian countries with a high TB burden have been routinely treated in hospital on an inpatient basis for long periods. This is often unnecessary. In most cases, ambulatory TB treatment delivers similar or better treatment outcomes. However, simply shifting from hospital-based to ambulatory care is not going to improve treatment outcomes overnight. TBEC believes that in order to have successful, quality, people centred care in ambulatory setting, TB treatment needs to be integrated into primary health care. Referral systems between health, social and community care providers must be strengthened and engage civil society and community organisations in all aspects of these activities ranging from advocacy to service provision.

To learn more about people-centred care, please read our brief.

Research and Development

TBEC believes that there is an overwhelming need for the accelerated uptake of existing tools and for the development of new ones if TB is to end this century. Current estimates show that without new tools to fight TB, after 2025 existing tools will be exhausted. The field of research and development of new TB drugs, diagnostics and vaccines has suffered from a chronic lack of investment, resulting in an alarmingly bare pipeline of promising compounds and drugs. Prioritising new tools to end TB would have a major public health impact and provide a rapid return on investment. TBEC aims to increase advocacy efforts in favour of R&D in TB at relevant international and regional forums such as G20 and the EU.

To learn more, please read our brief.