Falling Short: A Civil Society Perspective of the Response to Multi & Extensively Drug Resistant Tuberculosis (M/XDR-TB) in the European Region

Falling Short FrontProgress in involving civil society in national TB programmes across the European region is falling short. As 2015 is quickly approaching, the report finds that only one of the eight indicators related to the community aspects of the Consolidated Action Plan to Prevent and Combat M/XDR-TB 2011-2015 (MAP) has been met.

Worldwide, almost half a million people developed MDR-TB in 2013 and the European Region continues to bear a quarter of the global MDR-TB burden, with some of the highest rates of drug-resistance among new TB cases. Fifteen of the twenty-seven WHO high MDR-TB burden countries are situated in Eastern Europe and Central Asia, while our MDR-TB cure rates in the lowest in the world. In practical terms, this means that only one MDR-TB patient in three in the European Union –one of the richest regions in the world- is successfully treated.

“Civil society can play a transformative role in TB care and should be recognised as significant players in the TB response in the European region. Often, civil society is embedded within communities and well placed to take on operational roles relating to detection and patient support” said Safar Naimov a former MDR-patient from Tajikistan. “They can advocate for interests of their members of the groups they represent, play an integral role in empowering key affected populations, help reduce stigma and discrimination, promote social and structural changes in the fight against TB, mobilise resources, advocacy and engage in policy dialogue” he added.

Endorsed by the 53 Member States of the WHO European Region three years ago, the MAP aimed to contain the spread of M/XDR-TB by achieving universal access to prevention, diagnosis and treatment in all Member States by 2015. The MAP has been providing clear recommendations to countries on improving the involvement of civil society in TB programmes. ‘Falling Short: A Civil Society Perspective of the Response to Multi & Extensively Drug Resistant Tuberculosis (M/XDR-TB) in the European Region’ assesses the progress made to ensure the involvement of civil society in the M/XDR-TB response among the high priority and high burden countries of the Region.

“Involvement of civil society (including affected communities) in policy dialogue and service provision remains fairly limited especially at national level. Progress has been witnessed at the regional level where civil society has been regularly involved in WHO Europe policy mechanisms as well as in National TB Programme Reviews” said Fanny Voitzwinkler of Global Health Advocates, Coordinator of the TB Europe Coalition.

In 2012, the WHO Europe office also launched the Regional Collaborative Committee, a multi-stakeholder platform that duly involves civil society and community representatives from across the region. Much progress remains to be seen in the development and funding of Community Systems Strengthening activities at the country level. The research also finds that more needs to be done to make sure that patients are systematically made aware of their rights and responsibilities.

We encourage key stakeholders including National TB Programme officials, civil society, Country Coordinating Mechanisms, National Governments, WHO Europe and EU institutions to take heed of our recommendations and begin to turn the tide against this unacceptable epidemic.

You can read the full report here.

You can read the annex of the report, including methodology and findings here.