Deaf or Dead? It is time to stop the torture of people who suffer from TB


On World Tuberculosis Day 2019, the TB Europe Coalition calls on countries in the World Health Organization (WHO) European Region[1] to stop the common use of injectable drugs with debilitating side effects on people who suffer from a form of Tuberculosis that is resistant to antibiotics (drug-resistant Tuberculosis or DR-TB). Countries should immediately provide newer, safer treatments as recommended by the WHO.

We welcome those countries that have already launched the National Tuberculosis Program transition plan to new M/XDR-TB treatment recommendations, but still the large majority of people living with DR-TB have no access to new lifesaving treatment, such as bedaquiline and delamanid, and have currently no other choice than to go through older, more toxic, less effective treatment options. This is due to the fact of high costs of the new TB drugs and, in some countries, due to the lack of legal basis to use new DR-TB treatment. The older treatment regimens can take up to two years and consist of more than 14,000 pills combined with daily injections that cause severe side effects, such as deafness. This gives only a 50% chance of survival, which in fact means that every second person is sentenced to death.

“People living with DR-TB essentially have to choose between deafness or death. This is a false choice. Today, when there are safe and high-quality drugs for DR-TB treatment, the use of drugs that lead to hearing loss, hepatitis, depression, hallucinations must be equated to torture and inhuman treatment of a person. Urgent access to the safer, simpler, less-toxic treatment regimen now preferred by WHO, will provide an opportunity to maintain their health and choose life.” – stressed Dr Jonathan Stillo, Vice-Chair of TB Europe Coalition Board.

Hundreds of thousands of people in Eastern Europe and Central Asia are denied their fundamental right to life when pharmaceutical companies deliberately keep prices artificially high and when they do not register drugs at the national level. It’s time for us, as civil society advocates, to remind the pharmaceutical companies that they do not operate in a world made of profit margins and market shares, but a world where people die every day of preventable, curable diseases.

To be effective in protecting citizens from a costly and potentially deadly disease, governments should grasp the magnitude of the health threat and address drug-resistant TB both domestically and globally.

Through Political Declaration adopted as the result of the United Nations High-Level Meeting on TB (UN HLM on TB) in September 2018, countries have committed to protect and promote human rights, universal access to quality, affordable treatment and to end TB by 2030, but this needs to be backed up by concrete action in the short term, rather than only in the long term. Strong political will, which can only be achieved through civil society advocacy, will help overcome each of these barriers.

“Civil society and TB community must come together to catalyze and sustain the political will to deliver on UN HLM on TB political declaration, pushing governments to prioritize access to safe and affordable TB medicines. A critical step for governments is the revision of national TB guidelines backed up by necessary legal provisions in accordance with the new WHO recommendations. Governments should mobilize every available resource necessary to give access to safe and affordable DR-TB treatment for their citizens.” – says Yuliya Chorna, Executive Director of TB Europe Coalition.

We, as a civil society, urge governments to speed up adoption of new approaches in TB treatment, promote dialogue between regulatory agencies and manufacturers regarding urgent registration of new DR-TB drugs and push for compulsory licensing to increase the production of quality generic TB treatment, which will significantly reduce costs. We urge countries with smaller markets which have less negotiating power, laws, and policies necessary to keep TB medicines available and affordable to use global pooled purchasing platforms, such as the Global Drug Facility (GDF). Using such mechanisms will assure people’s access to quality-assured anti-tuberculosis drugs.

“TB advocates can make a real difference in providing access to lifesaving treatment and in ensuring that progress in political commitment is made. The action is needed now! TB advocates should remember that sustainability in TB issues mainly depends on political commitment. If we do not progress year by year, then TB will progress day by day. We should have an ongoing sustained engagement on issues that impact the lives of persons living with TB.” – emphasized Elchin Mukhtarli, Director of NGO “Saglamliga Khidmat”.

Lofty promises and goals for ending TB in some distant future will not mean anything unless concrete steps are taken to “get the job done”.



Note to the editor:

Contact info:

Yuliia Kalancha – +38.095.468.46.40

Anete Cook – +44.20.7793.3970, @TBECoalition


The TB Europe Coalition is a regional advocacy network of civil society advocates and activists across the WHO Europe region. We believe that civil society should be much more involved by governments and the health systems in driving the response to the TB epidemics.

The WHO Global TB Report 2018[2] shows that 36 per cent of people with TB is missed by health systems. For the fourth year in a row, TB remains the world’s single largest infectious killer, with 1.6 million deaths in 2017.[3] TB kills more people each year than HIV and malaria combined. In 2017, 940,000 people died of AIDS-related causes,[4] which included 300,000 TB deaths among HIV-positive people, and malaria killed 445,000 people.[5]

Estimates suggest there were around 275 000 new TB cases and 24 000 deaths in the WHO Europe region in 2017[6], mostly from eastern and central European countries: 18 high-priority countries for TB response bear 85% of the TB burden and 99% of the multidrug-resistant TB (MDR-TB) burden[7]. WHO Europe region includes nine of the top 30 countries with the highest burden of multidrug-resistant TB (MDR-TB) in the world. MDR-TB is one of the key drivers of the TB epidemic in Europe, along with HIV, social determinants and TB risk factors, and limited capacity of health systems.[8]


[3] Ibid.
[4] UNAIDS, Global HIV & AIDS statistics — 2018 fact sheet,
[7]Armenia, Azerbaijan, Belarus, Bulgaria, Estonia, Georgia, Kazakhstan, Kyrgyzstan, Latvia, Lithuania, the Republic of Moldova, Romania, the Russian Federation, Tajikistan, Turkey, Turkmenistan, Ukraine and Uzbekistan

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Deaf or Dead? It is time to stop the torture of people who suffer from TB
Deaf or Dead? It is time to stop the torture of people who suffer from TB