Paul Sommerfeld, Chair of TBEC Board
Paul Sommerfeld has been involved with the Coalition ever since its beginning. In the early years he led on building up links between activists in Western Europe and those in the East. That led to the development of advocacy training initiatives. Dusting off his early career skills in facilitation and organisation development, Paul has become a lead trainer for TBEC helping to facilitate numerous TB advocacy workshops across Eastern Europe and Central Asia.
He has also, since its creation in 1998, been Chair of TB Alert, a United Kingdom (UK) based NGO with programmes in Africa, India and the UK. He has been active in the global Stop TB Partnership and was once Chair of its then Advocacy, Communication & Social Mobilization (ACSM) Working Group.
Paul has been deeply involved in global health action for almost 30 years – first in leprosy, then in TB, and also in influenza; with a focus on advocacy and community engagement.
He has held a series of UK public appointments – as Chair of a National Health Service operational Trust responsible for mental health services in a large part of West London, and as a lay member in organisations responsible for the professional regulation of judges, barristers, osteopaths, and pharmacists.
Jonathan Stillo, Co-Chair of TBEC Board
Dr. Jonathan Stillo is an Assistant Professor at Wayne State University where he teaches Medical Anthropology and Public Health. He received his PhD at the City University of New York Graduate Center. He has received research grants from the US National Science Foundation, the US Fulbright-Hays Commission, The US Department of State, among others.
Since 2006, Jonathan has been researching tuberculosis (TB) in Romania—including living at a Romanian TB sanatorium for several months—interviewing hundreds of patients and medical personnel across the country. His research focuses on the social, economic and structural aspects of tuberculosis.
Jonathan has served as an International Expert on the World Health Organization teams that conducted the 2014 review of Romania’s national TB program, as well as the TB program review in Republic of Moldova in 2013. In 2016, he was the lead consultant on an ECDC project to develop Romania’s integrated community-based TB support. He is currently working with the Moldovan TB Patient’s organization, SMIT, on projects related to People-Centred Care. He is also working on projects related to hearing loss due to M/XDR-TB treatment including an article which will include stories of people from Romania, Armenia, and elsewhere.
In addition to his research activities, Jonathan is an advocate for improved TB diagnosis and care, is a member of the Wolfheze working group on People-Centred Care and is a member of the Global TB Community Advisory Board. Jonathan has been an active member of the TB Europe Coalition Steering Committee (precursor of TBEC Board) since 2012. See these sites for additional information on Jonathan’s research and advocacy:
Marine Ejuryan, Vice-Chair of TBEC Board
Marine has been engaged in TBEC’s work as part of the previous Steering Committee since she joined the Global Health Advocates as an Advocacy Officer in 2015. She has been involved in TBEC’s programmatic activities, country visits and capacity building workshops, as well as in advocacy towards the European Union, regional and global TB stakeholders for a better TB response in the WHO Europe region.
Prior to joining Global Health Advocates, for two years she had worked in an international NGO advocating for human rights and good governance in Brussels, as well as in international development field during an internship in the European Commission. Additionally, she had previously done internships at the United Nations Development Program in Armenia and in the Armenian Mission to the United Nations in New York.
Marine has a Master’s Degree in EU International Relations and Diplomacy Studies from the College of Europe in Bruges, Belgium and a Master’s Degree in International Relations from Yerevan State University, Armenia.
Stefan Radut, Vice-Chair of TBEC Board
Stefan Radut is from Bucharest, Romania. In 2011, he started to be involved in ASPTMR, a young MDR TB patient’s organization at that time. He came across TBEC in 2012, when he heard the word “advocacy” for the first time. At that moment, he understood that advocacy was one of the ways to solve the MDR TB and TB problems in Romania and across the region. Now, seven years and four advocacy workshops later, three of which were conducted by TBEC, he is engaged in advocacy in Romania. He was involved in drafting the National Strategy for Tuberculosis Control, as well as in the development of the Draft Romanian TB Law. Now, he is actively involved in advocacy efforts aimed at the approval of the Romanian TB Law. He is a member of the Romanian CCM and represents Romania in SEE Regional Coordination Mechanism. He is also a board member of COPAC-Romania (Coalition of Organizations of Patients with Chronic Diseases from Romania). He is a Vice-Chair of TBEC Board and a member of TB People. Since December 2017, he is a member of the National Committee for Coordination of the Implementation of the National Strategy for Tuberculosis Control in Romania 2015-2020.
In 2017, he was on an Exchange Program for NGO leaders focused on working with marginal population and I spent 3 weeks in the U.S.A. meeting many US Government and NGO representatives. Stefan’s organization, ASPTMR, holds 1-2 advocacy events a year.
A member of TBEC since 2012, Cristina has been working for the Romanian Angel Appeal Foundation in Bucharest since 2009. She has carried out both HIV and TB related activities and since 2017 she is the Advocacy Officer, in charge with driving TB and HIV related legislative and policy changes. For the past 4 years she has been advocating for the adoption of the TB Bill by the Parliament, during a long and challenging legislative process.
Cristina has been involved in the TB and HIV advocacy campaign, which started in April 2017 under the 2015 – 2018 Global Fund grant and which will continue until 2021.
She has helped coordinate and implement activities such as the Alert Report “The Crisis of Anti-TB Medicines in Romania” (http://health-observatory.ro/wp-content/uploads/2017/10/ORS_TB_report_2017_en_summary.pdf) developed in collaboration with the Romanian Health Observatory and the media campaign that ensued (http://13miidevieti.ro/multimedia/) and the Romanian NGOs contribution to the Universal Periodic Review (http://www.ohchr.org/EN/HRBodies/UPR/Pages/ROindex.aspx). She has contributed to the advocacy campaign awareness component carried out through the Facebook Stop TB Romania page: https://www.facebook.com/ParteneriatulStopTB/ and advocated for the 2019-2021 HIV/AIDS National Strategic Plan to be approved by the Government. She has also taken the fight against TB to the community level by organising meetings with local authorities in almost half of the country, arguing for better community support for the TB patients.
She has been involved in several TBEC activities as well: together with TBEC members, she contributed to facilitating two advocacy workshops, one in Riga, Latvia (2015) and another one in Bucharest, Romania (2016). In addition, she was part of the TBEC team who met with TB stakeholders in Moldova in 2012 for advocacy purposes. Currently, Cristina is working with TBEC members to organise a second workshop in Bucharest in November 2018 and a meeting with Romanian MPs and representatives of Global TB Caucus.
Nela Ivanova is from Burgas, Bulgaria. Since 2011, she has been working as a social worker in education at the “Dose of Love” Association – a non-governmental organization that unites experts in the field of drug use and HIV/AIDS prevention.
Nela started working at the “Dose of Love” as a volunteer, later she continued as an outreach worker with vulnerable groups, project coordinator and Executive Director. At present, she coordinates a local project on TB and is acting as Financial Director on the Managing Board of “Dose of Love”.
Nela has experience in working with vulnerable groups: drug users, sex workers, men having sex with men, homeless people and prison inmates, with a focus on drug use and addictions, HIV/AIDS and TB.
Olga Klymenko became an activist in the fight against tuberculosis after her illness in 2015 and she is now Head of TB People Ukraine.. Prior to that, she worked in a foundation, which was helping preterm infants. She published a book “My inner world. Confessions of a TB patient”, which was on sale in Ukraine and helped people with a TB and their families. Olga worked with the Alliance for Public Health and the Network of PLWH.
Olga is enjoying the support of the parliamentary sector and takes part in regional meetings. In Ukraine, the situation with treatment of the disease is difficult, but things have started to change on the wave of the healthcare reform.
This year, alongside the “Light of Hope” Foundation, and with the support of the Global Fund and BO “Network of PLWH”, Olga is involved in implementing a program aimed at strengthening the community impact in 11 regions of the country.
Elchin Mukhtarli is the chairman of “Saglamliga Khidmat”* NGO, a national civil society organization in Azerbaijan, founded in 2010. Since 2011, he is the Head of TB Azerbaijan Coalition (TBAZC), which comprises five national civil society organizations.
In 2010, Elchin joined the TBEC family, and in 2014, he became a TBEC Steering Committee member.
Elchin is a member of CCM, member of national TB working group and TB REP working group. Since 2016, he has been acting as TB REP Focal Point as CSO partner from Azerbaijan.
Elchin studied at the Azerbaijan State University of Languages and later continued his studies at the faculty of Health Promotion and Health Education at the University of Maastricht in the Netherlands. In 1997, he started his career in the field of public health as a Health Educator at the Department of Tuberculosis of the International Committee of the Red Cross (ICRC). His desire to become a health promoter and wish to help vulnerable people led him to the position of Team Leader in health education, TB case finding programs and many other TB related activities. Later, he was promoted to the rank of head of TB department in ICRC. He held many managerial positions in TB Control programs and acted as an initiator in the implementation of TB and TB/HIV related social projects.
Since 2011, he has been involved in the implementation of TB projects (TB treatment follow up among ex-prisoners, TB advocacy, TB Education & Counseling projects, etc.) financed by Global Fund.
From 2016 onwards, he has been actively engaged in the TB Advocacy work within the “TB Regional EECA Project (TB-REP) on Strengthening Health Systems for Effective TB and DR-TB Control” Program financed by the Global Fund. During the last two years, many advocacy activities were held within the TB-REP advocacy projects in the country with the involvement of other national CSOs under Elchin’s coordination. During this period, inter-sectorial partnerships (between CSO and parliamentarians, CSO and NTP etc.) were established, the patient’s community network was created, and a good collaboration and partnership was developed between media and CSOs. Activities such as, production of a short video aiming to promote people-centered model of health care, conducting of KAP survey among TB patients and health staff, meetings with TB stakeholders and decision makers, trainings on different subjects, on TB advocacy and capacity building for the representatives of CSOs, journalists, etc. were conducted. As a result, the public had a good opportunity to hear, watch and read true information about TB and its treatment and care through TB stories, articles that are often published on media portals and in newspapers and shared widely through social networking. With the support of TB-REP team led by Elchin a ‘Public Hearing’ event dedicated to TB was held at the Azerbaijani parliament in January 2018. TB Azerbaijan Coalition has established a friendly partnership with some members of the parliament aiming to end TB.
Safarali Naimov is a MDR-TB survivor from Tajikistan. Having experienced the disease (2009-2012), he learned about important aspects related to TB, and more importantly about the fact that the needs of people with TB were not and are still not sufficiently known to the decision-makers.
He became a member of TB Europe Coalition in 2013, which helped him realize his capacity as human resource on TB work and start efforts to contribute to making sure that the socio-economic and psychological needs of people with TB were addressed. A training conducted by TB Europe Coalition helped Safarali become a co-founder of a national multi-stakeholder Coalition “Stop TB Partnership, Tajikistan” uniting people affected by TB, their relatives, as well as, organizations involved in the fight against TB (governmental, public, private and international).
Currently, Safarali is managing projects on TB prevention at the “Stop TB Partnership, Tajikistan” implementing the TB Regional EECA Project on Strengthening Health Systems for Effective TB and MDR-TB Control in Eastern Europe and Central Asia.
Support Groups created within the Coalition “STOP TB Partnership” provide treatment support and engage in case finding. Safarali has been leading the team in Tajikistan to develop a necessary tool (Stop TB Community App) to empower communities with knowledge, provide guidance for accessing services, collect information about the needs of people with TB and monitor the implementation of the TB response. Safarali’s team collaborates and engages with local businessmen, the Committee on Religion and Regulation of National Traditions, the Ministry of Education, the Republican Healthy Life Style Center under MoH and SPP and other government departments with a view to supporting the National TB Program and making sure that the move from long-term hospitalization to quality people-centered care in ambulatory settings is happening, whilst taking into account the needs of people with TB and their families.
Safarali participated in several regional conferences and policy consultations, helping to bring the voice of people to the TB response. He is a member of TB People – the Global Network of People Affected by TB, as well as a member of the Global Coalition of TB Activists (GCTA).
Oxana Rucsineanu is a TB activist from the Republic of Moldova, leading Moldova National Association of tuberculosis patients „SMIT”.
Being an active member of the National Platform of TB NGOs, GCTA, TBEC and TB People networks and having gone through personal experience of drug-resistant tuberculosis, she has coordinated since 2011 several projects focusing on the rights and responsibilities of TB communities and the need of building comprehensive approaches to TB care.
Oxana is strongly committed to advocating for constructive partnerships and efficient treatment processes as well as to making TB voices heard in the global response to the disease with a recently grown interest for engaging communities in operational and clinical researches.
Since joining TBEC network Ksenia, a TB survivor herself, has been one of the few very active community members from Russia. Ksenia has extensive experience in patient advocacy and TB activism. Ksenia herself started the online community of people with TB in Russia in 2012, and has several thousand visitors per month. She has created a volunteer network, which provides free consultations with TB experts and ensures psychological support. She is also one of the co-editors of TBPeople brochure “You and TB”, created by TB survivors, and aimed to debunk the many myths surrounding TB. She has been an active participant in various international and regional civil society networks, projects and conferences and she strongly believes in the value and added impact of community engagement in the fight against TB.