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Civil Society Organisations
What does TBPeople Ukraine do?

What does TBPeople Ukraine do?

TBEC Board Member, Olya Klymenko is, in addition to many other commitments, Chair of the Board for TBPeople Ukraine. Today, she will share a little information about TBPeople Ukraine’s history and development, as well as their current projects. When I became ill in in 2015, I decided to help other people with TB. Over time, I gathered together a group of civil society activists, all of whom had also had TB at one point. They started to support patients on a volunteer basis. Meanwhile, in Ukraine, there were changes in legislation and the transition to a patient-centred treatment model began. We saw that there was a real chance to make genuine change at state level and speak for patients by using successful tools and practices so we started to learn more about what we could do. We joined TBPeople and in May 2018, by unanimous vote we took the decision to register as the organisation TBPeople Ukraine. This not only gave us the chance to develop the global TB People network, but also to create national movements. Having registered as an official organisation, we became the first regional branch in the history of TBPeople. Since then, we have been working More…

TBEC Participation in the EU HIV/AIDS, Hepatitis and Tuberculosis Civil Society Forum Meeting

TBEC Participation in the EU HIV/AIDS, Hepatitis and Tuberculosis Civil Society Forum Meeting

The biannual face-to-face meeting of the EU HIV/AIDS, Hepatitis and Tuberculosis Civil Society Forum (CSF) took place on 17-18 June in Luxembourg. The forum has been established by the European Commission to facilitate the participation of European NGOs in policy development and implementation, as well as in information exchange activities. Initially established as a forum for HIV/AIDS civil society, in 2017 the EU Civil Society Forum was extended to include hepatitis and tuberculosis NGOs, which allowed TBEC to formally become a CSF member. During the meeting, CSF members, including TBEC, provided updates on their work and discussed upcoming opportunities and challenges. TBEC also facilitated several sessions focused on political advocacy towards the EU. Since the last meeting in November 2018, the EU Civil Society Forum has been involved in a variety of advocacy activities. The Advocacy and Policy Working Group, coordinated by TBEC Board member Marine Ejuryan, has particularly focused its activities on ensuring that health is prioritised in the next EU long-term budget, the Multi-annual Financial Framework (MFF), as well as making sure that health stays high on the agenda of the new EU Commission and Parliament after the EU elections in May. During the meeting, CSF members agreed More…

LHL International's work in Norway

LHL International’s work in Norway

LHL International are a member of the TB Europe Coalition. In Norway, approximately 90 per cent of those who become ill come from countries with a high incidence of TB. LHL International works actively with immigrants and vulnerable groups that  for various reasons have less access to healthcare services and are at high risk of getting TB. Many have little knowledge of TB, and there is a need to spread information that is adapted to the different target groups and their needs. We do outreach information work at immigrant introduction centres, asylum centres, and meeting places for immigrant organisations. We also cooperate with immigrant organisations and health personnel in developing information particularly adapted to affected groups. Among materials developed are information booklets and films in Norwegian; English and other minority languages. You can watch one of our short information films in various languages here. One former patient who appreciated the information booklet said: “Technical people use scientific words, but other words are needed. We like information that is presented in a soft and nice way. It is important to become friend of your problem. Information is part of the treatment”. Many TB patients have a difficult time because they have recently More…

Civil Society Capacity Building for DR-TB Regional Meeting

Civil Society Capacity Building for DR-TB Regional Meeting

When new, effective medicines providing safe treatment for widespread debilitating diseases, it is vitally important to ensure that everyone who needs such medicines has access to them. It was with this aim therefore that TBEC held a regional meeting on civil society capacity building for DR-TB. Existing TB treatments are incredibly gruelling for the patient, but medical innovations (shorter or safer treatments, new medicines, or more exact methods of diagnosis) can genuinely relieve a patient’s suffering. But what use are such innovations if patients aren’t able to access them? What use are new medicines if there’s no way for hospitals to buy them or any way to prescribe that they are needed? Any measurement of the success of innovative treatments has to be countered by an assessment of their accessibility. When everyone has access to new treatments, we can start to talk about how successful they are. Guidelines on DR-TB Treatment The recent WHO recommendations on drug-resistant TB (DR-TB) are the first in a long time that provide a genuine possibility to start to improve the treatment of DR-TB by using innovative and more effective medicines with less debilitating side effects. It is therefore vital that we do not waste time; More…

Find and Support - Interview with Daniel Kashnitsky

Find and Support – Interview with Daniel Kashnitsky

This interview first appeared in the March 2019 edition of the “Don’t Fly Away” magazine, Odessa Way Home Charity Fund, Ukraine  Let us introduce our guest, Daniel Kashnitsky, Capacity Building Manager from TB Europe Coalition. Daniel came to Odessa for a three-day visit to do research into our experience in active finding of missing people with tuberculosis. Daniel found time to answer a few questions for our journal. Daniel, tell us about TB Europe Coalition and its main activities. TB Europe Coalition (TBEC) was created as a network of civil society organizations working in the WHO European Region in 2009. In 2018, the TBEC secretariat was founded in Kiev, Ukraine to be closer to the region of Eastern Europe and Central Asia (EECA), where some of TBEC’s main projects and the most affected countries of the WHO European Region are located. TBEC has two main objectives – to develop the capacity of activists in advocacy, including supporting more local activities as well as civil society campaigns at national and international level, not to mention developing organizations’ capacity in direct service provision. TBEC has three thematic areas: budget advocacy – here we particularly mean the transition of TB services to national More…

First Results of Tuberculosis Programme in Tajikistan

First Results of Tuberculosis Programme in Tajikistan

Within the framework of the Project “Assistance in reducing the burden of tuberculosis in the Republic of Tajikistan” – implemented in the country since May 2018 – 1,499 people have been tested for TB, of which 77 were diagnosed with TB. All 77 have started treatment and have been included in the Social Support Programme. The interim results of one of the project’s components – the Small Grants program – will be summarized in this article by Arthur Niyazov, Project Manager and representative of the international organisation “Project HOPE” in Tajikistan. The Project “Assistance in reducing the burden of tuberculosis in the Republic of Tajikistan” aimed to improve access to diagnostic services, treatment adherence, and patient support for vulnerable groups (specifically, migrants and their families). The international organisation “Project HOPE”, as a sub-recipient of the Global Fund grant, is responsible for the implementation of two important components of the project: the Small Grants programme and the motivational support programme for Drug-Resistant TB patients. The Principal recipient of the grant is the Project Implementation Unit of the Republican Center of Protection of the Population from Tuberculosis. The Small Grants programme aims to improve access to quality services for the diagnosis and More…

Giving MDR-TB Patients a New Lease on Life

Giving MDR-TB Patients a New Lease on Life

Multidrug-resistant tuberculosis (MDR-TB) can be successfully treated today; however, the treatment course can take as long as two years and side effects can be severe if not appropriately addressed. The rate of MDR-TB treatment success is largely dependent on a patient’s socioeconomic circumstances as patients from marginalized groups are particularly vulnerable to dropping out of treatment. That is why ensuring patients’ adherence to TB treatment through a patient-centered approach that engages communities and civil society organizations, is critical to the success of MDR-TB treatment outcomes. Consistent with the principles of the WHO End TB Strategy, Project Hope’s interventions in Tajikistan (within the framework of the Global Fund to fight AIDS, Tuberculosis and Malaria TB grant) have provided a robust foundation for building a strong coalition in which communities and civil society organizations play a crucial role in combatting TB. Trained members of civil society and non-governmental organizations (NGO) have a unique capacity through patient education and psychosocial support to reach out to their communities to ensure that TB and MDR-TB patients make full recovery. One such patient for whom Project HOPE’s community-based initiatives were life-changing is Alisher Latipov. A family man from the Spitamen district in Tajikistan’s Sughd region, Alisher More…

TB Azerbaijan Coalition initiated TB awareness campaign on World Humanitarian Day

TB Azerbaijan Coalition initiated TB awareness campaign on World Humanitarian Day

TB Azerbaijan Coalition initiated TB awareness campaign on World Humanitarian Day and cheered up Patients with live music by Azerbaijani singers. On 18th August 2015, on the occasion of World Humanitarian Day, the members of Azerbaijan TB Coalition (TBAzC) organized TB awareness campaign that accompanied with nice live pop music and some theatre performances by former-patients and young people. The purpose of the event was to teach key affected population more about TB disease, its prevention, treatment and as well as to have an opportunity to talk to TB patients and get acquainted with their problems and wishes and last but not least to cheer them up with live music by popular singers of Azerbaijan. It is acknowledged that with entertaining way of passing information is much more effective than doing it without any visual aids. The event took place in the yard of National Research Institute for Lung Diseases, where hundreds of TB patients receive treatment in wards inside of block of hospital buildings. It is mainly attended by TB patients and their family members who really were in need of such entertaining event. Some audience gathered around the circle and some were watching through their windows of hospital More…

Key positions of civil society and communities from the EECA region on the new Global Fund Strategy 2017–2021

Key positions of civil society and communities from the EECA region on the new Global Fund Strategy 2017–2021

On 12-13 July 2014, civil society and communities’ representatives met in Chisinau, Moldova for the Consultation meeting in order to develop key positions and suggestions that should be reflected in the Global Fund’s strategy for 2017-2021. The consultation was organized by the Communities Delegation on the Board of The Global Fund in co-operation with the Eurasian Harm Reduction Network. Civil society and community participants were representing wide regional networks, such as EHRN, ECUO, ECOM, ENPUD, EWNA, SWAN, TBEC, ITPCru, Delegations on the Board of the Global Fund, such as the Communities Delegation, the Developed and Developing Country NGO Delegations and the EECA Delegation. The delegates concluded their key messages and topics relating to the context of the fighting against TB and HIV in Easter Europe and Central Asia. The summary document: “Key themes and positions on the Global Fund Strategy 2017–2021 as stated by civil society representatives from Eastern Europe and Central Asia” covers the following themes: Transition to domestic funding and Global Fund investment in middle-income countries Continuum of HIV and TB services for key affected populations Treatment for TB, HIV, conditions caused by long-term ART, co-infections and access to medications Human rights, gender equality and vulnerable groups Community More…

Access to health care critical for internally displaced Roma in Ukraine

Access to health care critical for internally displaced Roma in Ukraine

Europe is home for 12 to 15 million members of the Roma minority whose living experience exposes them to marginalization, which is manifest in health status: Roma exhibit some of the worst morbidity and mortality indicators in the Europe region. The World Bank, the UNDP, and the Council of Europe report that TB is more prevalent in Roma communities and that the Roma are more vulnerable to TB. An earlier report ‘Confronting a Hidden Disease: TB in Roma Communities’ described governmental and NGO activities to address TB in Roma communities and recommended areas for program expansion. In March 2015, a hearing took place in Brussels at the European Economic and Social Committee “European funds for Roma health integration”, attended by more than 40 participants: experts in health issues, NGOs, representatives of the European Commission, Council of Europe, Fundamental Rights Agency, national contact points. It was organized by AMALIPE Center for Interethnic Dialogue and Tolerance (Bulgaria), Roma Center for Public Health Policies SASTIPEN (Romania) and European Roma Information Office (Brussels, Belgium) with the support of Roma Health Project, Open Society Foundations. The Member of European Parliament of Roma origin Damian Draghichi spoke on the connection between health with education, housing and employment. More…

A New Bill on TB Control Finalized in Romania

A New Bill on TB Control Finalized in Romania

The Romanian Angel Appeal Foundation and the Association for MDR-TB Patients’ Support finalized the elaboration of the bill on the TB control in Romania. Among the main provisions of the bill are the following: psycho-social services for TB patients; universal access to treatment and DOT; paid medical leave and allowance for temporary incapacity of labour during all treatment duration for all patients, irrespectively of their contribution to social fund; monthly food allowance for the entire duration of the treatment, etc. On 30th September, 2014, at a press conference attended by Dr. Alexandru Rafila – Counselor of the Minister of Health, the latter stated that the Ministry of Health supported the bill and would propose it to the Government as a law initiative. However, the Romanian TB advocates are aware that there is a long way from this statement to the enactment of the bill by the Parliament, and they continue to advocate for more support of the new bill. Please feel free to disseminate this message to as many as possible people. Romanian organisations are calling for a support of the new draft bill in convincing the Romanian Government and Parliament to pass this bill as soon as possible. You More…

CSOs in Azerbaijan Report on Strengthening the Voice of TB Affected Community

CSOs in Azerbaijan Report on Strengthening the Voice of TB Affected Community

Azerbaijan is one of the 18 high priority countries for Tuberculosis (TB) Control in the WHO European Region and one of the 27 high MDR-TB high burden countries in the world. In 2012, Azerbaijan notified a total of 8140 TB cases, 2800 of them were estimated with MDR-TB. As in the other former Soviet Union (FSU) countries, TB re-emerged as an important public health problem in 1990s and its burden remains high in Azerbaijan. The latest (for 2010) WHO-estimated TB incidence in the country is 110 per 100,000 population, which is 7th highest rate among 54 countries of the WHO European Region. In Azerbaijan, the involvement of civil society organizations (CSOs) in treatment follow-up project for ex-prisoners by providing social and psycho-social support has allowed the country to achieve the best management and cure rates for MDR-TB in prisons in the former Soviet Union and one of the best worldwide. However,  CSOs were not recognized as respected partners until 2011 across many of components of national TB control programmes and the voice of people affected by TB, and particularly TB patients, was not heard until a few months ago. These voices were also not represented on the Country Coordinating Mechanisms More…

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