Last week at the International Union Against Tuberculosis and Lung Disease civil society made their voices heard loud and clearly when they stormed the stage to demand faster progress towards eliminating TB. The group of advocates, who declared a need for a target of zero TB deaths, brought some much needed urgency to the room as they called for greater ambition in attempts to eliminate TB.

Along with advocates from across the world, participants included members of tbec2the TB Europe Coalition, an informal advocacy alliance of civil society organisations across Europe and Central Asia working to increase the political will to control the disease throughout the World Health Organisation European Region. Those on stage included representatives from Moldova, Macedonia, Romania, Russia, Bulgaria, Azerbaijan, France, Belgium, Italy and the UK .

Against a backdrop of placards and impassioned faces, Colleen Daniels from Treatment Action Group challenges those in the room to aim higher in the fight against TB in order to get to zero TB deaths, zero new TB infections and zero suffering and stigma as a result of TB. 

The voices of former TB patients and civil society actors from across the WHO European Region continued to be heard later on in the week as the TB Europe Coalition hosted a lively and engaging session at ‘advocacy corner’.

The session titled ‘European Voices in the TB Fight’ gave advocates from Eastern Europe and Central Asia the opportunity to speak about their experiences with TB and on how TB is dealt with in the region.

“When I found out I had Multi Drug-Resistant TB (MDR-TB) I was scared and confused, I didn’t understand what was happening to me”, explained Stefan Radut from Romania. During his long treatment, Stefan had to take an injection and 18 different pills every day. This treatment caused him anxiety and hallucinations, he was depressed and his hearing capacity was compromised. “I experienced exclusion and isolation”, said Stefan. “I couldn’t get out and my friends were scared of visiting me”.

In his misfortune, Stefan was lucky because he could access good treatment in a country, Romania, where only very few MDR-TB patients have access to proper drugs, psychological and social support. According to latest data, Romania has a MDR-TB treatment success rate of 16% compared to for instance 91% in Pakistan.

TBEC1Oxana Rucsineanu from Moldova has also been affected by the disease. After being treated for MDR-TB, she founded the SMIT patient organisation, which works to empower TB patients by raising awareness about their rights, including social and psychological support, and how to practically access these services. “We need to raise the voices of TB patients into discussions about decisions that affect their lives” Oxana said.

“When I firstly heard about it in 1999, MDR-TB was only a degeneration of TB due to improper or uncompleted treatment. Now MDR-TB is all over the place”, stressed Elchin Mukhtarli of the NGO “Support to Health” in Azerbaijan. MDR-TB has become a bacterial epidemic in itself and has just been declared by WHO as a public health emergency.

The session illustrated the challenges faced by civil society organisations in Bulgaria, Macedonia and Russia and to hear from the audience on how there are similar problems outside of Europe, such as Pakistan and Kenya.

Sadly the voices we heard at the session are only those of the lucky ones. Too many voices of former TB patients will never be heard.