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Crescer - TB in Portugal

Crescer – TB in Portugal

Last year, TBEC ran a Study Visit in which nine civil society activists came to London for a three-day training on TB advocacy. We will be featuring a series of blogs from the participants explaining their work at home, to share their experience more widely. We hope that this will help other organisations make connections, provide examples of best practice, and highlight the work being done to end TB in the WHO Europe region. The following blog was written by Inês Marinho, who works as a nurse at Crescer. Crescer Community Intervention Association is a Portuguese NGO, founded in 2001, that implements and develops harm reduction projects in the urban area of Lisbon. Our Harm Reduction intervention stands out from other initiatives, as our outreach teams have been involved with the most vulnerable and segregated members of the public – consumers of psychoactive substances, homeless people, and sex workers – of the city of Lisbon since 2002. Throughout the years of on the field intervention, one of the problems facing our service users has been the high prevalence of contagious infectious diseases (particularly HIV, HCV, and TB). With our field experience, operating daily in the main urban areas of consumption More…

New report shows highest ever funding for global health research – but gaps persist

New report shows highest ever funding for global health research – but gaps persist

Many of you will have heard about the urgent need for new tools to prevent, diagnose and treat tuberculosis. We tend to talk about it quite a lot. Recently, a brand new report charting investments into global health research and development (R&D) has been launched in Brussels, so we’re going to spend some time thinking about the bigger picture. The G-Finder Report tracks funding for better tools against neglected diseases, like tuberculosis. This funding reached a new high of US $4 billion in 2018. This is an increase of US $290 million since 2017. This is great news, because it is both the largest real funding increase on record and the first time that funding has grown every year for three consecutive years. Building momentum on this really matters. It means that countries are starting to recognise that without investing in R&D now, we won’t be able to deliver on the Sustainable Development Goals. TB is the perfect example – without new tools by 2025, the WHO says the world will simply not be able to end TB by 2030. The same applies to lots of other diseases, whether that is malaria, hepatitis or HIV. We have to move past the ‘either-or’ More…

European Respiratory Society Congress in Madrid

European Respiratory Society Congress in Madrid

Late last year, Paul Sommerfeld (Chair of the TBEC Board) and Oxana Rucsineanu (TBEC Board Member) attended the 2019 European Respiratory Society Congress in Madrid where they presented papers on TB advocacy and patients’ perspectives. Patients are at the heart of TBEC’s work and we are delighted by the opportunity to centralise their experiences at such a large event. Oxana has been interviewed by the European Lung Foundation on her experience of the Congress and speaking as a patient. As she says, advocates face great responsibility: “Every time I participate in an event, I feel responsible, as I hope that people that listen to my speech leave the room with the idea that it is time to engage more with patients. This is what I have strived for since the beginning of my work in TB – I would like patients to be heard and to be treated with dignity and respect. It’s only by raising awareness, forming partnerships, and supporting personal perspectives, values, beliefs and preferences that the best outcomes can be achieved.” You can read the full interview here. This webpage is the product of an activity that has received funding under an operating grant from the European Union’s More…

TBEC Webinar on Advocacy for Access to DR-TB Treatment

TBEC Webinar on Advocacy for Access to DR-TB Treatment

Late last year, TBEC ran a webinar on advocating for access to DR-TB treatment. This is something that was a focus of our work in 2019, starting from World TB Day when we called on countries in the region to stop the widespread use of injectable drugs as a treatment for DR-TB. These injectable regimes have debilitating side effects and can take up to two years to complete. Patients face over 14,000 pills as well as daily injections, and at the end, they only have a 50% chance of survival. At its very core, this means that every second person is sentenced to death. In the words of the Co-Chair of the TBEC Board, Dr Jonathan Stillo “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.” Countries must immediately provide the newer, safer treatments More…

TB and Universal Health Coverage

TB and Universal Health Coverage

There is no shortage of high-level political promises on achieving universal health coverage (UHC), ending tuberculosis (TB) and leaving no one behind, as well as recognition of the co-dependency of the agendas to end TB and achieve UHC. For example, the UN High-Level Meeting on UHC recognised the need to “strengthen efforts to address communicable diseases including HIV/AIDS, TB, malaria and hepatitis as part of UHC and to ensure that the fragile gains are sustained and expanded by advancing comprehensive approaches and integrated service delivery and ensuring that no one is left behind.” Moreover, the World Health Organization (WHO) lays this out clearly in the 2019 Global TB Report: “the End TB Strategy milestones for 2020 and 2025 can only be achieved if TB diagnosis, treatment and prevention services are provided within the context of progress towards UHC.” But, as the UN Committee for Development Policy has acknowledged, leaving no one behind is “seldom disputed in principle, but the complexity of its practical implementation is often insufficiently acknowledged.” The response to TB, where 30% of new cases go undiagnosed, unreported or untreated each year (referred to as “missing” people), is a good place to start on practical implementation to reach those who are most More…

Discussing TB and Human Rights in East Europe and Central Asia

Discussing TB and Human Rights in East Europe and Central Asia

Date: 22-23 November, Kyiv, Ukraine Meeting venue: Hotel Rus, Kyiv On November 22-23 TBEC organized a Community Rights and Gender Regional Workshop on TB and Human Rights. This was a regional event for TB community activists and CSO leaders from Eastern Europe and Central Asia. TBEC provided a resource platform for this workshop, joining efforts with co-organizing partners – the Alliance for Public Health and STOP TB Partnership. TB People also joined as a technical partner. The workshop was conducted within the auspices of the Community, Rights and Gender Strategic Initiative of the Global Fund for HIV/AIDS, TB and Malaria. It empowered participants to understand and activate a human right-based response to TB in their countries and communities and equip them with tools to address human rights-related barriers to TB services and protect the human rights of people affected by TB, including key and vulnerable populations. It is acknowledged by an increasing number of stakeholders that reducing legal barriers is the most effective measure to end tuberculosis today. The key question of the workshop was why a human rights-based approach is necessary for a successful TB response: what framework is provided by international documents to conceptualize rights of people affected by TB, including More…

TBEC 2019 Annual Board Meeting and 2019 Summary

TBEC 2019 Annual Board Meeting and 2019 Summary

Members of the TBEC Board met in Kyiv on the 21st November in Kyiv for our annual face-to-face meeting. Over the last few years, TBEC has grown exponentially and its reach has extended, however, its sustainability very much depends on donor funding. The annual board meeting allows the organisation to reflect on the year, to identify any upcoming challenges, and to plan for the upcoming period. Ten board members, six members of the Secretariat, and the Chair of the Oversight Advisory Committee (OAC) were all in attendance. The meeting lasted for one day and was divided into five sessions: summary of achievements in 2019 and ways forward; member needs and member engagement; board and OAC engagement; TBEC finances; and TBEC visibility, communications strategy and campaigning approach for 2020. Overall, we are very pleased with our achievements in 2019, which vary from the technical and organisational, to programmatic expertise and international policy change. TBEC’s profile has been raised to new heights through our presence at and organisation of a number of global, regional, and in-country events. Four in-country coaching visits and/or meetings were organised this year (in Armenia, Azerbaijan, Belarus and Bulgaria) as well as four regional meetings (one in the More…

Book Review – ‘Peace inside me: Confessions of a TB girl, a biographical novel’

Book Review – ‘Peace inside me: Confessions of a TB girl, a biographical novel’

In 2016, Olya Klymenko released her biographical novel ‘Peace inside me: confessions of a girl with TB, a biographical novel’, which describes her experience with TB and the bitter stigma associated with this disease. Today Olya is the chair of the organisation TB People Ukraine and a Board Member for TBEC. You can order the book directly from the author by email at Olyaklymenko2910@gmail.com, by Viber +380676850140 or by Messenger https://www.facebook.com/messages/t/Olga.Klimenko29. Olya donates the proceeds from sales to support TB treatment and families in difficulty. Any one person is capable of doing a good deed. This is not a real review. It is instead a response to a book that left its impression in my heart. The book fascinated me from the first pages with its sincere and straightforward story about the author’s difficult childhood and adolescence. When Olya was a young child, her mother became seriously ill and soon died, leaving Olya with many painful memories. Her relationship with her father was fraught and she grew up too fast, having to survive against the background of poverty and social insecurity so familiar to any post-Soviet reader. From the age of 14, she worked, left home, became homeless, lived in More…

Prevention and treatment of TB among children in Atyrau, Kazakhstan

Prevention and treatment of TB among children in Atyrau, Kazakhstan

This week we have a blog from our member, Project Hope, on the interim results of their project on the Implementation of Highly Effective Measures of Prevention and Treatment of TB among Children and Adolescents in Atyrau, Kazakhstan, which were presented at a round table organised on the 1st November in Almaty. The project launched in March this year to improve the organization of TB prevention measures among adolescents and children in Atyrau. It is being implemented by the international organization Project HOPE-Kazakhstan within the framework of the Social Investment Program of Tengizchevroil LLP and in cooperation with the National Research Center of Phthisiopulmonology of the Ministry of Health of the Republic of Kazakhstan. The representatives of organizations involved in the project – the N ational Research Center of Phthisiopulmonology, Tengizchevroil LLP, educational and health institutions, as well as the representatives of the Project HOPE and other international organizations attended the roundtable event. During the course of the event, information on the epidemiological situation with TB among children and adolescents in the Republic of Kazakhstan and in the Atyrau region, as well as the results of the project were presented. In particular, it was noted that over the past 10 years, More…

TBEC Coaching Visit in Azerbaijan

TBEC Coaching Visit in Azerbaijan

From the 12th-15th November, TBEC Capacity Building Manager Marichka Makovetska and TBEC Board Chair Paul Sommerfeld attended a three-day coaching visit in Azerbaijan as part of the TB-REP 2.0 project. The visit aimed to understand the overall context of the TB response in the country, with a specific focus on the capacity building needs of civil society organisations (CSOs) involved in TB care. During the first day, TBEC’s civil society partner “Saglamliga Khidmat” Public Union organised a meeting with a variety of interested civil society organisations. The partners discussed priorities and barriers regarding access to people-centred TB care in the country and discussed the idea of the organization of a National TB Dialogue in the Republic of Azerbaijan. The partners discussed the focus on people-centred TB care as a part of the response to tuberculosis and the need for community services to ensure successful treatments outcomes. Civil society members present at the meeting mentioned that there are some positive examples of cooperation between state agencies and CSOs in the area of information and education projects on TB. Unfortunately, social support projects on TB are still implemented through Global Fund financing. It is, therefore, necessary to understand how, going forward, civil society More…

Southern and East Europe Regional HIV and TB Community (SEE RCN)

Southern and East Europe Regional HIV and TB Community (SEE RCN)

Over the last few months, some of TBEC’s partners have been forming the Southern and East Europe Regional HIV and TB Community (SEE RCN). The formal launch for the network and its first meeting were held in In Podgorica, Montenegro in September 2019. The SEE RCN is been established in response to growing challenges facing countries in the region regarding the situation post-transition from the support of Global Fund to Fight AIDS, Tuberculosis and Malaria in numerous countries of this region.  For example, there are very significant challenges in Bosnia and Herzegovina in terms of the response to HIV, which is currently characterized by the nearly complete absence of the HIV prevention services for the Key Affected Populations, including the on-site testing of the KAPs, harm reduction services, support to PLHIV, etc.  Romania, Bulgaria, Albania are also facing some of these challenges and other countries may experience similar challenges in the future. The Southern and East Europe Regional HIV and TB Community (SEE RCN) network brings together leading CSO partners, PLHIV and PLTB from 11 countries. Its first meeting was supported or attended by numerous international partners, including WHO, UNAIDS, TB Europe Coalition, Global TB Caucus, Stop TB partnership, etc.  More…

TBEC Coaching Visit in Armenia

TBEC Coaching Visit in Armenia

 From the 24th – 26th September, a team of TB REP 2.0 project partners, representing TBEC and PAS Center took part in a three-day coaching visit to the Republic of Armenia. The visit objective was to get acquainted with the overall context of the TB response in the country, with a specific focus on the capacity building needs of civil society organisations involved in TB care. To address such needs, a National Dialogue is planned in the future – to promote cooperation between NTP, other TB stakeholders, and civil society in advancing a people-centred approach to TB care. Further details regarding the National Dialogue will be made available on the TBEC website calendar. The coaching visit’s agenda included meetings with NTP, WHO CO, civil society organisations, organisations from affected communities, and Members of Parliament. There are a number of positive signs regarding the response to TB in Armenia and the country has demonstrated particularly strong leadership in facilitating the timely introduction of new WHO DR-TB treatment guidelines. Within the remit of this change, Armenia is also transitioning to an entirely oral-treatment regime, rather than injectables. This is a great success; TBEC have been highlighting the need to provide TB patients with More…

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