EATG Annual Peport 2016
ACHIEVEMENTS SHOWN IN NUMBERS
They represented 30 countries:
Albania, Armenia, Belgium, Bosnia and Herzegovina, Croatia, Czech Republic, France, Georgia, Germany, Greece, Italy, Kosovo, Kyrgyzstan, Latvia, Macedonia, Moldova, The Netherlands, Poland, Portugal, Romania, Russia, Serbia, Spain, Switzerland, Turkey, Ukraine, United Kingdom, United States of America, Uzbekistan, and Zambia)
Community Representatives engaged with industry, academia and other stakeholders during the ECAB meetings, the European community summit on prevention and the STEPS workshop on long term remission from HIV infection
webinars with the Medicines Patent Pool to update members on licenses and patent agreements for HIV and HCV drugs
follow-up activities by training participants enabled
activists participated in our trainings from 34 countries:
Albania, Armenia, Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Czech Republic, France, Georgia, Germany, Greece, Hungary, Italy, Kosovo, Kyrgyzstan, Macedonia, Moldova, Montenegro, Norway, Poland, Portugal, Romania, Russia, Serbia, Slovenia, Switzerland, Tajikistan, The Netherlands, Turkey, Ukraine, United Kingdom, Uzbekistan
Russian PLHIV community members have been provided with treatment literacy training on HIV and co-infections through follow-up projects organized by EATG trainees in Russia.
hours of training delivered in Russian
training presentations have been made available in Russian
GOAL 1: TARGET RESOURCES ON ACCESS GAPS AND SPECIFIC KEY POPULATIONS
Prioritise (sub-) regions, countries, and cities with the greatest gaps in access to screening, prevention, and affordable treatment as well as inequities in protection from stigma and discrimination
Prioritise key populations with the greatest gaps in access to screening, prevention, and affordable treatment as well as inequities in protection from stigma and discrimination
GOAL 2: INCREASE COMMUNITY INFLUENCE IN RELEVANT BIOMEDICAL AND SOCIAL SCIENCE COMMUNITIES
Improve effectiveness and efficiency of members’ and community involvement in HIV-related social and clinical research
GOAL 3: ADVOCATE FOR AFFORDABLE TREATMENT AND EVIDENCE/RIGHTS-BASED POLICIES
Expand community involvement in the promotion of affordable and innovative treatment and services for HIV and co-infections
Promote enabling socio-economic and legal environments to fight stigma and discrimination as well as human rights violations
GOAL 4 RENEW ACTIVISM THROUGH SCALED UP TRAINING AND CAPACITY BUILDING
Build-up capacity on cascades of care and “knowing your epidemic” especially on key population access gaps
Provide training and capacity building using face-to-face as well as distance learning technologies
GOAL 5 MAXIMISE IMPACT THROUGH MULTI-STAKEHOLDER STRATEGIC PARTNERSHIPS
Confirm key strategic partners and develop working agreements with them, including community representation within their structure
Pursue work on co-infections, co-morbidities, wellbeing and ageing through collaborative arrangements with pre-existing specialist organisations
GOAL 6 ENSURE INTERNAL STRUCTURES ARE ‘FIT FOR PURPOSE’
Ensure that all levels of EATG are working collaboratively towards achieving the goals of the Long Term Strategy (LTS)
Establish a strong fundraising capacity to build sustainability and a diversified funding base in terms of the needs of the LTS and beyond
Establish a monitoring and evaluation (M&E) system that demonstrates the difference EATG makes to the quality of life of PLHIV and other at-risk communities across Europe
GOAL 7 ENSURE ACTIVE AND REPRESENTATIVE MEMBERSHIP
Enhance member engagement in all activities of EATG
Establish a system of strategic recruitment with focus on diversity and representation
STRATEGIC GOAL 1: TARGET RESOURCES ON ACCESS GAPS AND SPECIFIC KEY POPULATIONS
PRIORITISE (SUB-)REGIONS, COUNTRIES AND CITIES, PRIORITISE KEY POPULATIONS
EATG organised a series of activities and events prioritising sub-regions, countries and cities with the greatest gaps to access testing, prevention and affordable treatment, EATG organised the following events and activities that resulted in a series of outcomes.
Clinical trials in Eastern Europe and Central Asia for research on HIV, viral hepatitis and tuberculosis, access to new drugs for treating HIV, hepatitis and TB in Eastern Europe and Central Asia (EECA) remains limited. ECAB appointed Sergey Golovin to identify and select research and clinical sites in Central-Eastern Europe and Central Asia that could be recommended to the pharmaceutical companies to establish clinical trials (CTs) for treatment innovation.
The report can be downloaded at the following link:
Updating European policy framework on HIV, TB and viral hepatitis. EATG and its members engaged with national and European policy makers towards updated action plans, surveillance and funding, and also crucially greater attention to Eastern Europe and Central Asia. This has included building partnerships with other HIV, TB and hepatitis related groups, partners at national level; coordination of EU Civil Society Forum and input into the EU HIV Think Tank; advocacy meeting(s) with officials of the directorate-general for public health; engagement with Members of the European Parliament for follow up; advocacy towards the UN high-level meeting on HIV/AIDS in June; participation in ECDC and WHO surveillance meeting etc. Moreover, EU HIV CSF was nominated as one of the regional partners in the organisation of AIDS 2018.
The action aims to denominate the steps needed to be taken to reduce the medicines shortages problem affecting patients and healthcare systems. It is expected to make a meaningful and tangible contribution to achieving consensus on evidence-based solutions, to ameliorate the problem in both the European, and international context. EATG is involved in the working group dedicated to the patient’s clinico-pharmacological needs and health outcomes in medicines shortages. EATG has provided to the consortium valuable information on community response for medicine shortage for HIV and hepatitis drugs.
Translations of factsheets
EATG has supported the translation of factsheets in 5 different languages (Russian, Ukrainian, Georgian, Kazakh and Armenian). A website has been launched to distribute the factsheets in the EECA region. The project is in collaboration with some EECA organisations and aims at removing/reducing the knowledge gaps within the region.
EATG got involved in the EU-funded ESTICOM project (European Surveys and Trainings to Improve MSM Community Health), which aims at facilitating access and improving the quality of prevention, diagnosis of HIV/AIDS, STIs and viral hepatitis and health care services for men who have sex with men (MSM). The 3-year-project consists of a 1) behavioural survey for HIV/AIDS and associated infections for MSM (EMIS 2017), 2) a survey and tailored training for Community Health Workers (ECHOES) and 3) Training Programme for Community Health Workers.
EATG is involved especially in a review of Community Health Workers in 40 European and neighbouring countries. This review combines results of an online survey with over 80 participants, a literature search of 1,400 records (of which 21 were analysed in depth), 10 interviews and detailed study of almost 50 training packages.
Civil Society Involvement in Drug Policy (CSI)
EATG joined as an associated partner this EU-funded project which aims at enhancing meaningful civil society involvement in development and implementation of drug policies on national and European levels. The project contributes to the European Drug Strategy and Action Plans and the work of civil society in that regard. The project is coordinated by the Regenboog Group, the Netherlands, and host of CORRELATION – European Network Social Inclusion & Health.
EATG encouraged the investment on research in Eastern Europe and Central Asia by offering concrete information on research centers that can be approached by industry and academia
EATG contributed to the establishment of easily accessible in-language resources for Eastern European health care providers, patient representatives, patient groups and PLHIV via the translation of factsheets
EATG established increased collaboration with partners in the TB and hepatitis fields
In September, WHO adopted HIV and Hepatitis action plans
There was consensus for new policy framework on HIV, TB discussed by EU Ministers of Health in October. The Maltese EU Presidency of 2017 put HIV on its agenda; MEPs put forward questions to the European Commission on the update of its policies and actions at an exchange of view meeting. The European Commission is supporting the development of a joint action of several EU countries to improve interventions on HIV, TB and viral hepatitis new policy framework on HIV, TB and HCV was discussed by EU ministers of health in October. MEPs have put forward questions to the European Commission on the update of its policies
PROVIDING INCREASED SUPPORT FOR TARGETED TESTING AND LINKAGE TO CARE FOR
The first thematic ECAB on diagnostics, held from 17-19 June in Bologna, was attended by 22 EATG delegates and community guests. Community members discussed with representatives from Biolytical, Alere and Cepheid possible solutions to perform (rapid) point-of-care (POC) testing and/or screening for HIV and other infectious diseases in community settings. The internal meeting included presentations of pan-European projects (OptTEST, European Testing Week, EDAT, HepHIV Conference) and local community-based initiatives from Zambia, Uzbekistan, Serbia and Portugal
EATG organised community reviews of the tools on indicator condition testing and the toolkit on removing legal and regulatory barriers to testing. EATG is supporting the dissemination and communication on the project to promote uptake of tools and research findings by stakeholders. Research on advocacy to remove testing barriers from the project was presented at the AVAC-EATG prevention meeting Early 2016, EATG took part in the expert consultation panel on testing for the review of the ECDC testing guidelines.
EATG took part in the EU Fundamental Rights Agency stakeholders meeting on increasing access to health services for LGTBI end February. EATG shared best practices in community engagement through checkpoints and OptTEST work.
EUROPEAN TESTING WEEK
EATG took part in the planning of the fourth edition of the European HIV and Hepatitis Testing Week in November. EATG was actively involved in the review and development of materials developed to support local Testing Week campaigns. EATG was instrumental in bringing about factsheets to support local media activities addressing key populations. The Testing Week reached 519 partners in 47 European countries. EATG supported outreach to get European Commission endorsement. The European Commission refers to European Testing Week speeches. EATG supported outreach to government to get them to endorse the initiative at national level.
Early 2016, EATG took part in the expert consultation panel on testing for the review of the ECDC testing guidelines.
The diagnostics meeting of ECAB contributed to a wider scientific discussion on the promotion of community based rapid and affordable testing and further development of diagnostics
EATG promoted the visibility and the sustainability of community based initiatives such as check-points
Tools have been developed to improve the delivery of indicator condition based testing and to advocate for changes in legislation and regulations to scale up access and uptake of testing by key affected groups
EATG and the policy-making community have co-developed guidelines on rapid testing four capacity building purposes
EATG CALLS FOR INCREASED UNDERSTANDING OF TREATMENT AS PREVENTION IN COMMUNITY AND POLICY-MAKING CIRCLES
Following the popularity of the first expert meeting on prevention held in January 2015, a second European HIV Prevention Summit was held on 29-31 January 2016.
Second European Prevention Summit
Organised jointly by the European AIDS Treatment Group (EATG) and AVAC, the meeting brought pharmaceutical companies, public health experts, academics and leading scientists in the field of prevention research together with over 50 European community based advocates for three days of information exchange and debate in Brussels. The meeting report can be found at: www.eatg.org/papers-publications
IMPROVE EFFECTIVENESS AND EFFICIENCY OF MEMBERS’ AND COMMUNITY INVOLVEMENT
EATG advocated for the need of innovative strategies to prevent new HIV infections and strongly advocated for the inclusion of PrEP in the European prevention toolbox
STRATEGIC GOAL 2: INCREASE COMMUNITY INFLUENCE IN RELEVANT BIOMEDICAL AND SOCIAL SCIENCE COMMUNITIES
EATG has been actively involved in discussions about the new Horizon 2020 call and the role of community in such calls. Recent experience showed that community is often considered as a needed but not as an equal partner. During the discussions this topic was raised. Community involvement in academia led projects should change.
EATG contributed to the establishment of easily accessible in-language resources for Eastern European health care providers, patient representatives, patient groups and PLHIV via the translation of factsheets
As a key partner of EUPATI, EATG tremendously contributed to the development of an easy-to-use toolbox and guidelines aimed at increasing the community involvement in clinical research and in the interaction with key stakeholders
EATG brought the community voice into scientific projects as EHVA
EATG helped guaranteeing that the patient perspective is integrated in the study design and development. EATG also contributed to the dissemination of the project’s information and its outcomes by making them accessible to lay patients
STEPS III - A COMMUNITY INITIATIVE TO DESIGN THE PATHWAY FOR LONG TERM REMISSION OF HIV
A community workshop was organised by EATG on the 22 October 2016 in Glasgow before the bi-annual HIV Drug Therapy Congress. The seminar was attended by 34 attendees from people living with HIV, peer educators, community journalists, advocates and healthcare professionals with an interest in the scientific research for the long-term drug-free remission of HIV infection. Presenters from academia discussed the impact of interrupting Anti-Retroviral Treatment for applicants entering into clinical trials that seeks a vaccine or cure from living with HIV. Analytical Treatment Interruption (ATI) was one of the main topics of debate with the community, since it is the only way to assess whether complete eradication of HIV can been achieved.
Giulio Maria Corbelli is the EATG Project coordinator for the STEPS workshop.
EUPATI - European Patient Academy of Therapeutic Innovation
EUPATI Library: In January 2016 the “EUPATI Toolbox on Medicines R&D” went live in seven languages, with more than 3,000 content items, more than 1 million words in 100 thematic areas. The EUPATI Toolbox contains fact sheets, graphics, slideshows, videos, recorded webinars, print-ready materials as well as a full glossary released under Creative Commons, so that it is for public use and re-use. This effort included hard work of many EATG members who have contributed to the content development and review of numerous topics, covering the whole lifecycle of medicines R&D including materials on discovery research, clinical development, regulatory affairs, medicinal safety, pharmacovigilance and the principles of health technology assessment in lay language. The EUPATI toolbox is available at: www.eupati.eu
Guidance documents on patient involvement in medicine research and development: EATG, together with Bayer, co-led work package 7 of the EUPATI project (new topics and sustainability) in the development of guidance for patients’ involvement in medicines research and development. The EUPATI guidance documents cover interaction with regulatory agencies, HTA bodies, ethics committees and the pharmaceutical industry aiming to interact with patients. The documents underwent extensive review by the EUPATI project members and external reviewers before being released for public consultation. The comments received from the review by 34 organisations (including EATG, other patient organisations, industry, academia, NGOs, public health organisations, regulators, have ensured the guidance documents are robust and suitable for implementation.
There are four separate guidance documents covering patient involvement in:
Pharmaceutical industry-led medicines R&D
Health technology assessments (HTA)
Each guidance suggests key areas with opportunities for patient involvement.
David Haerry was the EATG Project Leader for EUPATI.
EHVA - European HIV Vaccine Alliance - an EU platform for the discovery and evaluation of novel prophylactic and therapeutic vaccine candidates
Since January 2016, EATG has been taking part in European HIV Vaccine Alliance (EHVA) an EU platform for the discovery and evaluation of novel prophylactic and therapeutic vaccine candidates.
EATG is involved in work package 9 (WP9), which deals with the evaluation of therapeutic vaccine trials (led by IDIBAPS and ISS) and WP11 – focusing on dissemination and exploitation (led by IAVI).
EATG members have contributed with comments to the summary of the Clinical Trial and the project coordinator has been involved in regular discussion with the therapeutic trial management group of the project.
The project coordinator, together with the EATG communication officer, extensively contributed to the preparation and release of the first newsletter of the project. More information and the newsletter can be found at the following link: www.eatg.org/news/ehva-july-2016-newsletter-now-out
Giulio Maria Corbelli is the EATG project leader for EHVA.
EmERGE - Evaluating mHealth technology in HIV to improve Empowerment and Healthcare utilisation: Research and innovation to Generate Evidence for personalised care
We continued our work to create the basis for further development of the IT tool that is being developed within the context of the EmERGE project. EATG arranged meetings with the University of Brighton (UOB) and community partners. Workshops were held in each country with community to identify needs, barriers etc. for such a tool. Sessions were also planned with clinicians. They were held in Brighton, Barcelona, Antwerp, Zagreb and Lisbon.
EATG also produced brochures, a website, the logo, a leaflet, recruitment materials etc. as communication partner within the project. The first issue of the EmERGE external newsletter was developed and sent out to stakeholders at the end of April.
Brian West is the EATG project leader for EmERGE.
European Community Advisory Board (ECAB) meetings on HIV
Giulio Maria Corbelli, ECAB Chair
18-20 March: nineteen ECAB members and community delegates attended this first HIV ECAB of 2016 in Brussels to discuss the pipeline and ongoing trials on innovative research for HIV treatment, cure and prevention with ViiV Healthcare and Merck Sharp & Dohme (MSD). During the meeting the participants also discussed ECAB activities and the Affordability Project.
31 March: 18 community delegates gathered in Berlin to meet with Gilead Sciences.
18-20 November: the third ECAB meeting focused on HIV took place in November in Brussels, where 25 community members met with Gilead Sciences for a follow up discussion and further updates on the scientific and access programmes. Members from Armenia, Croatia, Greece, Romania, Serbia and Turkey presented an overview of the main issues in their countries regarding access to HIV testing, treatments and services.
A training on protocol reviewing was offered to the participants in order to increase their capacity to interact with researchers. Stéphane de Witt from the European AIDS Treatment Network (NEAT) discussed with members the plan for future research on HIV in Europe.
Eighteen EATG members participated in the review of 11 documents submitted to EATG for comments including:
Clinical trials protocols for ViiV Healthcare;
Language adaptation of an online survey for Cepheid;
Public assessment reports, consultation on emergency contraceptives and package leaflets for medical products for the European Medicines Agency (EMA);
Guidance of interaction between patient and other stakeholders for the EUPATI project.
Within the Viral Hepatitis Portfolio EATG developed the following events to pursue our work on co-infections and co-morbidities:
Thematic ECAB meeting on Viral Hepatitis
20-22 May 2016: an ECAB meeting was dedicated to the engagement of members in the discussion on best treatment options and care for people living with hepatitis C (co-)infection. Twenty-two community delegates gathered in Budapest to discuss access to innovative HCV treatment and the pipeline of DAA development programs with Janssen and Gilead. Antons Mozalevskis from WHO presented the global strategy to eradicate viral hepatitis and the action plan for Europe. Erika Duenas from the Medicines Patent Pool presented on the MPP’s Voluntary License approach for hepatitis treatments.
The second thematic ECAB on viral hepatitis was held in Tbilisi (Georgia) with large participation of community activists from Eastern Europe and Central Asia. A training on diagnostic models for viral hepatitis B and C was offered by Stephan Dressler to the members. The attendees met then with representatives from Gilead Sciences, Merck Sharp & Dohme (MSD) and AbbVie to discuss research development and access issues. This ECAB was followed by the Sitges IX meeting.
EATG PUT HIV AND CO-INFECTIONS ON THE POLITICAL AND SCIENTIFIC AGENDA OF RELEVANT STAKEHOLDERS
Sitges IX policy meeting meeting on access to direct acting antivirals in Eastern Europe and Central Asia
In December 2016, Alliance for Public Health Ukraine, European AIDS Treatment Group, Eurasian Harm Reduction Network, and Treatment Preparedness Coalition in EECA (ITPCru) convened a meeting to discuss steps to be taken to ensure access to direct-acting antivirals (DAAs) for hepatitis C (HCV) in Eastern Europe and Central Asia (EECA). The meeting took place in Tbilisi, Georgia and brought together treatment activists, healthcare experts, representatives of the World Health Organisation Europe (WHO), the Medicines Patent Pool (MPP), national authorities and pharmaceutical companies. The recommendations to the different stakeholders (governments, civil society, companies, Medicine Patent Pool and WHO) are regrouped in the executive summary.
The report can be found at : www.eatg.org/news/sitges-ix-meeting-on-viral-hepatitis-report-now-available
Ludmila Maistat was the EATG hepatitis coordinator in 2016.
Thematic ECAB on diagnostics
17-19 June: An ECAB meeting was organised to the engagement of members in the discussion on diagnostics needs on HIV and co-infections. 23 community representatives attended this meeting held in Bologna.
In July 2016 Evgenia Maron was appointed as project leader to coordinate the EATG activity in HIV/TB treatment advocacy. Evgenia is responsible to develop a TB work plan and the preparation of a multi-stakeholder meeting addressing scientific needs for HIV/TB treatment.
TB Online is a website for activists, patients, health workers and researchers, which disseminates knowledge and promotes advocacy to end the worldwide epidemic of tuberculosis. The site is run by the Global Tuberculosis Community Advisory Board (TB CAB) and is dedicated to increasing community involvement in TB research and to mobilizing political will to develop and make available TB diagnostics and treatments.
EATG continued its contribution to TB online with six other organisations: Community Media Trust, Treatment Action Group, Treatment Action Campaign, European AIDS Treatment Group, South Africa Development Fund and HIV i-Base.
Ana Balkandjieva provides continuous content updates to the website.
EATG promoted the dialogue with industry to intensify the investment on innovation regarding research on strategies for long term remission from HIV infection (cure, therapeutic vaccines, long acting treatments)
EATG has successfully provided community feedback within projects and has also highlighted the importance of including community in scientific projects
EATG has discussed at more structural level how community could be involved in a more meaningful way and how future projects could be improved by including different requirements on community involvement
EATG continued its commitment to provide best treatment options to people (co)infected with viral hepatitis and tuberculosis prioritizing the needs and participation of community members from key regions and groups
STRATEGIC GOAL 3: ADVOCATE FOR AFFORDABLE TREATMENT AND EVIDENCE/ RIGHTS-BASED POLICIES
EXPAND COMMUNITY INVOLVEMENT IN THE PROMOTION OF AFFORDABLE AND INNOVATIVE TREATMENT AND SERVICES FOR HIV AND CO-INFECTIONS
The EATG affordability group was relaunched with members from the three working groups and has served as a platform to exchange information on pricing, intellectual property, health technology issues.
Andrej Senih was appointed as affordability consultant to carry out research and coordination work.
EATG promoted its access to affordable medicines agenda though membership of and contribution to the European Patient Forum, the European Public Health Alliance and the European Alliance on Affordable Medicine and Responsible R&D. EATG members addressed the issue in relevant meeting interventions.
PROMOTE ENABLING SOCIO-ECONOMIC AND LEGAL ENVIRONMENTS TO FIGHT STIGMA AND DISCRIMINATION AS WELL AS HUMAN RIGHTS VIOLATIONS
EATG supports actions on a local level when it is requested as response to negative developments at national level. In support to Czech colleagues, EATG and partners reached to the Prague Public Health Authority to European Commission, ECDC and WHO and UNAIDS to raise concerns with Czech authorities about the police investigation into the sex lives of 30 men living with HIV on the sole grounds that these men have been diagnosed with a sexually transmitted infection (STI from public health and fundamental rights perspectives.)
EATG co-chaired EU Civil Society Forum meetings and input into the EU HIV Think Tank on this subject in April. EATG supported advocacy ahead of the EU HIV High Level meeting.
Within the framework of OptTEST, EATG supported the development of advocacy toolkits and a database on removing laws and regulations hindering testing and linkage to care of key populations. It was presented in a number of community fora.
The issue was the subject of a UN panel on access to medicines, EU health council conclusions in June, WHO Europe session in September. A European Parliament resolution on EU options to improve access to medicines was adopted early 2017. The issue was also addressed in the EU Malta presidency agenda of HIV in the technical meeting in January 2017 and during the Informal EU Health to council in March 2017
With support of the policy work affordability was the subject of a un panel on access to medicines, EU health council conclusions in June, who Europe session in September. A European Parliament resolution on EU options to improve access to medicines was adopted early 2017
STRATEGIC GOAL 4: RENEW ACTIVISM THROUGH SCALED UP TRAINING AND CAPACITY BUILDING
BUILD UP CAPACITY ON CASCADES OF CARE AND “KNOWING YOUR EPIDEMIC” ESPECIALLY ON KEY POPULATION ACCESS GAPS
EATG INCREASED COMMUNITY INVOLVEMENT IN THE DESIGN AND DEVELOPMENT OF HIV AND
CO-INFECTIONS RELATED ACTIVITIES
Within the context of several projects and activities community involvement was encouraged and supported. This can be seen in projects such as EmERGE, EUPATI, OptTEST, but also in activities organised by members such as STEPS (the CURE symposium), PrEP seminar etc.
PROVIDE TRAINING AND CAPACITY BUILDING USING FACE-TO-FACE AS WELL AS DISTANCE LEARNING TECHNOLOGIES
On 13-15 May 2016 EATG, in cooperation with the Network of Low Prevalence Countries of Central and South East Europe (NeLP), has organised the “Improved Treatment and Care Access (ITACA): Treatment Cascades in Central and South East Europe” training. This regional training focused on advocacy for universal access to treatment and development and the analysis and use of treatment cascades as advocacy tools. The training brought together 26 activists from community and civil society organisations from Central and South East Europe region working in the field of HIV advocacy, treatment and care.
Following the training, ITACA training participants from Albania, Cyprus, Czech Republic, and Bosnia and Herzegovina have received grants for the implementation of follow-up projects to promote the development of treatment cascades in their countries.
EATG EMPOWERS COMMUNITY LEADERS TO ENGAGE IN DESIGNING AND IMPLEMENTING NATIONAL AND EUROPEAN PLANS ON THE TREATMENT AND PREVENTION OF HIV AND RELATED CO-INFECTIONS HIV AND RELATED CO-INFECTIONS
Community activists from the NeLP region gained knowledge and skills in the area of advocacy for the development of treatment cascades in their countries
Via a grant scheme for follow-up activities to the ITACA training EATG facilitated the development and implementation of local pilot projects aiming at promoting the dialogue between the community and policy makers on the development of treatment cascades
EATG EMPOWERED COMMUNITY TO ENGAGE IN DESIGNING AND IMPLEMENTING NATIONAL PLANS IN THEIR HOME COUNTRIES
Scoping meeting in Istanbul
At the beginning of the year, on 21 January 2016, EATG organised a small meeting in Istanbul, bringing together 12 participants, among them Turkish doctors and community representatives with the goal to identify the needs of the community and potential areas of collaboration between EATG and the community. Main topics discussed included the lack of anonymous, community-based testing in Turkey as well as little dialogue between the community and the national decision makers.
CoPE Project (Continuous patient Education)
One of the ways EATG continues building up capacity within the community is the CoPE (Continuous Patient Education) Project. This project allows community members from different regions in Europe to translate existing or produce new materials in their own languages.
Two calls for CoPE applications were sent out, in March and in September.
As a result of these calls, EATG supported projects in 13 different countries (Armenia, Croatia, Cyprus, Georgia, Hungary, Italy, Kyrgyzstan, Lithuania, Romania, Russia, Slovenia, Turkey, Uzbekistan). When combining the numbers of copies, it is estimated that over 43,000 brochures, leaflets or other materials were printed and disseminated. For the first time, the COPE project also supported new publications entirely developed by community organisations at the local level. Three projects of this type were successfully introduced.
The CoPE Project website is available under: www.eatgtrainingacademy.com/cope
The third year of the STEP-UP programme brought together 23 participants from Greece, Turkey, Romania, Moldova, Germany, The Netherlands, Macedonia, Serbia, Slovenia, Hungary, Russia, Ukraine, Tajikistan and Uzbekistan.
The training was held bilingually, in English and Russian, and enrolled half of the participants from the Eastern Europe and Central Asia region. The five modules of the programme have provided each of the 23 participants with approximately 100 hours of learning:
Module 1 was held in Brussels, Belgium on 18-21 February 2016 and addressed topics around HIV Treatment – focusing on standards and guidelines, drug classes and side effects and on positive conversations around treatment.
Module 2 of the program took place on 21-24 April in Berlin. Main topics of the module were the treatment of co-infections, diagnostics, research and development, as well as access to treatment and reimbursement processes.
Module 3 of the program was organised in Warsaw, Poland on 9-12 June. Participants learned about HIV and pregnancy, sexually transmitted infections, PrEP and PEP as well as about psychological and societal aspects of HIV-infection by discussing topics such as chemsex, stigma and discrimination or reality of different communities.
Module 4 has been organized on 15-18 September 2016 and took place in Budapest. Main topics discussed at the training were advocacy strategies, stakeholder engagement, treatment cascades and HIV and Ageing.
Module 5 - The final module in Edinburgh (20-23 October) looked at harm reduction, HIV cure, communication and fundraising following the training module STEP-UP participants have attended the HIV Glasgow 2016 conference. After the training participants had the opportunity to apply for follow-up activity grants with the project proposals that they have been developing throughout the programme. Following projects have been awarded with a grant:
Tajikistan: Project focusing on the creation of a group of mobile outreach consultants to work PLHIV in Dushanbe.
Tajikistan: Creation of a platform for organizations providing HIV related services to promote the rights and interests of young women living with HIV.
PrEP-Up: Creation of informative videos targeting different communities in collaboration with civil society organizations in order to initiate a youth advocacy platform around PrEP access and sexual health of young key populations in Europe.
Serbia: Project contributing to the improvement of HIV treatment efficiency by developing and providing ongoing peer support in the Infection Clinic in Belgrade.
Germany: Educational videos in the two most spoken languages among refugee/migrant community in Göttingen, Germany: Arabic and Russian.
Highlighting the importance of good patient-doctor relationship
On 7-8 March 2016 EATG and NAM held a workshop on the topic ‘Bridging the Gap between Doctors-and Patients’ during the HIV Experience Exchange Conference in Madrid. During this workshop results of the patient survey on the relationship of patients to their doctors that was launched by EATG in February 2016 have been presented to an audience that consisted of European doctors and healthcare providers. The results of the survey have furthermore been presented in a poster presentation at the HIV Glasgow Conference 2016.
Organisation of a workshop at the HIV Experience Exchange Conference in Madrid
On 7-8 March 2016 EATG and NAM held a workshop on the topic ‘Bridging the Gap between Doctors-and Patients’ during the HIV Experience Exchange Conference in Madrid. During this workshop results of the patient survey on the relationship of patients to their doctors that was launched by EATG in February 2016 have been presented to an audience that consisted of European doctors and healthcare providers. The results of the survey have furthermore been presented in a poster presentation at the Glasgow HIV Drug Theraphy Conference 2016.
Internal Training Needs Assessment
In order to better evaluate the training needs of its members, EATG as conducted a survey on internal training needs assessment. The survey results have shown training needs particularly in in the areas of Health Policies, Access to Medicines and Diagnostics and Drug Licensing and Registration processes. EATG will respond to these needs in developing its strategy on internal trainings for 2017.
EATG has developed and launched the Training Academy website that contains all information about past, current and future training projects of EATG and provides access to all training materials that have been developed and facilitated by EATG.
The EATG Training Academy website is available under: www.eatgtrainingacademy.com
Realization of the follow-up project activities of the AIM Training in Kaliningrad
Following the AIM Training in Kaliningrad in October 2015, EATG has selected four applications for follow-up projects from the training participants and awarded them with grants. These projects have been realized in different areas of Russia (St. Petersburg, Naberezhnye Chelny, Yekaterinburg and Samara) and consisted of the organisation of trainings on treatment literacy on HIV and co-infections for most-at-risk populations in Russia. These trainings have been monitored by EATG members from Russia.
Pilot webinar on tools to achieve access to affordable medicines:
A first webinar was organised. It addressed the intellectual property international framework and some of the underused ways around it to ensure access to affordable state of the art medicines for HIV, TB and HCV. There was discussion on voluntary licensing (e.g. through Medicines Patent Pool, limits, improvements and red lines towards industry) and the underused possibilities of compulsory licensing (also including for prevention). There was also some discussion on the challenges of TRIPS + provisions and the problems brought by the Deep Free Trade Agreements to Moldova, Ukraine and Georgia in terms of hindering access to cheaper quality medicines.
The four-day M-Care training (Mobilizing Migrant Communities via Capacity and Access Resource Development) was a training programme jointly organised by the European AIDS Treatment Group (EATG) and the European African Treatment Advocates Network (EATAN). The training took place in Brussels, on 10-14 November 2016. 16 migrant community advocates from United Kingdom, Germany, Portugal, Romania, Netherlands, Belgium, Italy, Greece, Portugal, Norway, Switzerland and France participated at the training.
Topics addressed during the training were prevalence, pathology and treatment of HIV, HCV and TB among migrant communities in Europe and specific barriers to access to healthcare services experienced by migrants together with approaches to overcome them. The last day of the training was dedicated to patient advocacy – providing the participants with hands-on skills in advocacy and stakeholder engagement.
Following the training, two participants from the United Kingdom and Belgium have received a grant to implement a follow-up activity directed at the empowerment of their local migrant community.
A new generation of treatment activists from 13 countries across western Europe, eastern Europe trained via the Step-Up program and builds links for future cross-border collaboration
113 people living with HIV and co-infections in the Russian cities of St. Petersburg, Naberezhnye Chelny, Yekaterinburg and Samara have received community driven treatment literacy training as part of the follow-up activities of the aim training
Community activists from the NeLP region gained knowledge and skills in the area of advocacy for the development of treatment cascades in their countries
CoPE has facilitated the production and translation of patient education materials, brochures and other resources related to HIV/AIDS and co-infections in 13 different countries
A new network of empowered migrant community activists across Europe has been initiated through the M-Care training
The training projects of the EATG have a better visibility due to the launch of the EATG Training Academy website
Migrant communities have been trained to get actively involved in treatment activism at local and international level
STRATEGIC GOAL 5: MAXIMISE IMPACT THROUGH MULTI-STAKEHOLDER STRATEGIC PARTNERSHIPS
CONFIRM KEY STRATEGIC PARTNERS AND DEVELOP WORKING AGREEMENTS WITH THEM, INCLUDING COMMUNITY REPRESENTATION WITHIN THEIR STRUCTURES
EATG ENSURED SUSTAINED EXTERNAL COMMUNICATION AND VISIBILITY
EATG ENSURES SUSTAINED EXTERNAL COMMUNICATION AND VISIBILITY
EATG signed a memorandum of understanding with EATAN, the African Advocacy network that has two members within EATG.
EATG also became partner of the Conference Coordination Committee organising AIDS 2018 and will also be involved in the IAS 2017 conference in Paris.
PURSUE WORK ON CO-INFECTIONS, CO-MORBIDITIES, WELL-BEING AND AGEING THROUGH COLLABORATIVE ARRANGEMENTS WITH PRE-EXISTING SPECIALIST ORGANISATIONS
EATG FOSTERED AND HARNESSED NEW PARTNERSHIPS AND COLLABORATIONS IN THE AGEING FIELD AND FURTHER PROMOTE THIS TOPIC
AGEING WITH HIV - A Lifecycle Approach
As part of the first phase of the Ageing with HIV project, EATG organised two thematic webinars and one conference dedicated to the topic “New challenges and unmet needs of people living with HIV/AIDS aged 50+”.
Both Webinars (“An Introduction to Ageing - Ageing with HIV in comparison with the general population” and “Cohorts – What do we know so far?”) are available in the project’s website.
The Conference “New challenges and unmet needs of people living with HIV/AIDS aged 50+” (Berlin, 31st March-3rd April 2016) brought many experts and community members together to present and explore a range of topics that affect this increasing population. The findings of this event will contribute to future conferences planned across other age groups i.e. children & adolescents and the middle ages of 18 – 45, and will be used by the EATG to inform policy, training and capacity and advocacy on behalf of all groups as they age in Europe.
The three-day event had 85 participants and the EATG website for the ageing project reached 8,669 people with 781 engaged in the webpage.
Planning for the second conference started shortly after the 1st event. The second phase of the project is dedicated to the topic “Children and adolescents living with HIV/AIDS (aged 0-25)”. A first steering committee meeting took place at the end of June 2016.
As an introduction to Phase 2, a webinar on the ‘Epidemiological background’ was organised in October. The recording is available on the website.
The AIDS2016 Conference held in Durban, South Africa in July 2016 featured several sessions and satellites on ageing with HIV. The EATG’s Ageing with HIV project was mentioned and promoted several times.
HIV Long Term Health Survey
EATG in collaboration with Volle Maan (Netherlands) has started to conduct a HIV Long Term Health Survey in eight European countries among people who are living with HIV/AIDS about their long term health. Via the community liaisons (local organisations in Portugal, Spain, France, Italy, Ukraine, Romania, UK and Belgium) people living with HIV and AIDS (especially those who are using HIV medications) will be asked about their long term health.
The two thematic webinars and the conference of the first phase of the Ageing Project have raised broad international attention to the unmet needs of the people living with HIV aged 50+
As a result of its work on the first phase of the project, EATG has identified priority areas for work in the fields policy, science and training to improve the quality of life of people living with HIV aged 50+
STRATEGIC GOAL 6: ENSURE INTERNAL STRUCTURES ARE ‘FIT FOR PURPOSE’
ENSURE THAT ALL LEVELS OF EATG ARE WORKING COLLABORATIVELY TOWARDS ACHIEVING THE GOALS OF THE LONG TERM STRATEGY
EATG DEVELOPED AN EFFICIENT SYSTEM AND STRUCTURE THAT ENABLES THE IMPLEMENTATION OF ITS WORKPLAN AND STRATEGY
EATG had two governance meetings this year. The first one (10 January) replaced the delayed end of year governance meeting from 2015. During this meeting the work plan 2016 was discussed. We also discussed the challenges of project management and the need for a better project approval system.
During the second governance meeting (May 9) the structure and delegation of authority models were further discussed. A new project planning system was presented.
ESTABLISH A STRONG FUNDRAISING CAPACITY TO BUILD SUSTAINABILITY AND A DIVERSIFIED FUNDING BASE IN TERMS OF THE NEEDS OF THE LTS AND BEYOND
EATG INVESTED IN BETTER STAKEHOLDER RELATIONS VIA A SERIES OF EVENTS AND ACTIVITIES
EATG held a stakeholders meeting in February 2016 which was attended by around 50 people from different areas. The newly adopted 2016-2018 Long Term Strategy as well as the women’s initiative was presented to the participants. We also presented the role of the CSF and the European Commission within our work, the involvement of ECAB in scientific projects and the ageing project.
Efforts have been done to secure non-pharma income. So far the only funds coming in from non-pharma resources are the project grant funds, where some new projects were approved again in the last 6 months (CHAFEA project, EHVA).
ESTABLISH AN MONITORING AND EVALUATION SYSTEM THAT DEMONSTRATES THE DIFFERENCE EATG MAKES TO THE QUALITY OF LIFE OF PLHIV AND OTHER AT-RISK COMMUNITIES ACROSS EUROPE
EATG APPLIED FOR PROJECT FUNDING TO NON PHARMA FUNDS AND FOUNDATIONS FOR EACH PILLAR OF THE ORGANISATION
EATG IMPLEMENTED A SYSTEM THAT ENABLES REPORTING ON ACHIEVEMENTS TO EXTERNAL STAKEHOLDERS
According to the new comprehensive communication strategy of the EATG, our new website was launched in June. More services and a thorough collection of documents are available on the website, with a calendar of key events relevant for HIV and comorbidities and access to all projects led or carried by the EATG.
Promotion of the website and access to restricted content for members is being rolled out throughout the rest of the year. This will ease the dissemination of work related documents and supporting materials.
The presence of the EATG at different events has remained strong and growing. One outstanding achievement was the successful bid for and organisation of the European Networking Zone in the Global Village of the AIDS2016 Conference in Durban, South Africa. This was done in collaboration with AIDS Action Europe and, to some extent, ECUO. The policy officer and communications officer were responsible for the program that could effectively strengthen the presence and lobbying power of European communities of PLHIV.
In order to access EATG projects performance and achievements and to demonstrate donors EATG is a reliable partner, Monitoring and Evaluation system guidelines and tools are currently being developed by the EATG project managers.
Creation of a new content and financial reporting method that focusses on the long term strategy i.e. split according to strategic objectives
STRATEGIC GOAL 7: ENSURE ACTIVE & REPRESENTATIVE MEMBERSHIP
ENHANCE MEMBER ENGAGEMENT IN ALL ACTIVITIES OF EATG
DMAG PROJECT ON WELCOMING AND SUPPORTING EATG MEMBERS
Processes have been started to review TORs for elected positions, constitutional gaps and conflicts.
Establishment of a fair compensation system
Not all work done within the organisation can be done by its members on a volunteer basis. EATG continues including members in its projects with fair compensation systems installed for input by our members that is requiring more time than what would be possible on a volunteer basis. This also reflects the importance and equal role community should have within projects just like other partners.
Member Skills Mapping Survey
In order to better understand what skills and talents the membership has and how to stronger involve members in the project work, EATG has implemented a Member Skills Mapping survey. The results of this survey will be analysed in cooperation with DMAG to foster the involvement of members into the projects and thematic areas that they are interested in.
ESTABLISH A SYSTEM OF STRATEGIC RECRUITMENT WITH FOCUS ON DIVERSITY AND REPRESENTATION
THE DIVERSITY OF THE HIV AFFECTED POPULATION IS OPTIMALLY REFLECTED WITHIN EATG’S MEMBERSHIP
The outcomes of the membership needs and skills assessment will be used to provide more targeted mentorship from and towards members.
Inclusion of new members from different key populations and with regional diversity has also been developed during the LTS and work plan discussions.
EATG has a better understanding of the skills, talents and interests of the membership as a consequence of the member skills mapping survey
2016 is the year with the highest income and budget in EATGs’ history!
2016 is the year with the highest income and budget in EATGs’ history!
ACHIEVEMENTS SHOWN IN NUMBERS
Donations/project funding 1.328.490 €
CAF Charities Aid Foundation 160.000 €
Other income 32.492 €
Recoverable costs 11.087 €
Membership fees 4.400 €
Interest 491 €
OUR DEVELOPMENT In just 5 years, we’ve increased our income by more than two-thirds
INCOME € 1.536 million
Pharmaceutical Companies 81%
European Commission/IMI 17%
2012 2013 2014 2015 2016
2016 EXPENDITURE ACCORDING TO TYPE OF COST
In 2016, we invested 1.622.874,37€ in
numerous way, including projects,
portfolios, trainings and activities, as
well as representation, staff salaries
and office operations.
Event expenses (30.9%) 501,703 €
Personnel expenses (18.8%) 305,186 €
Travel expenses (16.4%) 266,746 €
Outside services (13.8%) 224,166 €
Legal and professional fees (7.4%) 120,378 €
Rent and associated costs (6.0%) 97,941 €
IT and phone/internet (3.8%) 61,813 €
Other expenses (0.8%) 12,614 €
Membership fees (0.6%) 9,118 €
Audit fee (0.5%) 8,925 €
Office expenses (0.4%) 6,067 €
Depreciation (0.3%) 5,055 €
Insurances (0.2%) 2,558 €
2016 EXPENDITURE ACCORDING TO BUDGET LINES
Many of our members are very active. We estimate the volunteer time in 2016 amounts to be at least: equivalent to
EASTERN EUROPE AND CENTRAL ASIA
Money spent on activities and support for this region: €276K
At the beginning of 2016 we had 153 members from 45 countries. They were active in the following 42 countries in Europe and Central Asia: Albania, Armenia, Austria, Belgium, Bosnia & Herzegovina, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Georgia, Germany, Greece, Hungary, Iceland, Ireland, Israel, Italy, Kosovo, Kyrgyzstan, Latvia, Lithuania, Luxembourg, Macedonia, Montenegro, Netherlands, Poland, Portugal, Romania, Russian Federation, Serbia, Slovenia, Spain, Sweden, Switzerland, Tajikistan, Turkey, Ukraine, United Kingdom, Uzbekistan. We also have members living in Canada, South Africa and the United States.
By the end of December the number had increased to 177 members from 47 countries, now including Malta and Iceland. 120 of them are ordinary members; 57 are supporting members.
Most members come from Western Europe (n=96), followed by Central Europe (n=45), Eastern Europe (n=33) and other (n=3)
Most members come from Western Europe (n=96), followed by Central Europe (n=45) and Eastern Europe (n=33). The increase in membership during the past years is reflected in the number of countries represented by our members. The increase also led to a more empowered representation from the different regions of Europe within the EATG.
The majority of our members are male (117); we have 59 female members and 1 transgender.
The HIV status of 91% of our members was known by the end of December 2016. At that moment we had 63 HIVnegative members (39.50%), 90 HIVpositive members (53.57%) and 24 with an unknown status (14.29%).
The number of new members has considerably increased in the past few years. From our current membership most members joined the organisation in 2016 (n=32), 2014 (n=23), followed by 2015 (n=18).
Most members are born between 1970 and 1979 (n=54), followed by 1960-1969 (n=46). 37 members are born between 1980 and 1989, 19 between 1950 and 1959 and 10 between 1940 and 1949. 6 people are born between 1990 and 1999. Four are unknown.
The Board of Directors
January 2016 – September 2016:
Luís Mendaõ, Portugal – Chair
Nikos Dedes, Greece – Vice-Chair
Tomislav Vurusic, Croatia – Treasurer
Sanja Belak Skugor, Croatia – Secretary
Jackie Morton, UK – Chair
September 2016 – December 2016:
Jackie Morton, UK – Chair
Brian West, UK – Treasurer
Sanja Belak Skugor, Croatia – Secretary
Luís Mendaõ, Portugal – Director
Nikos Dedes, Greece – Director
The EATG External Advisory Board
Lella Cosmaro, Italy
Michel Kazatchkine, France
Jürgen Rockstroh, Germany
Matthew Weait, United Kingdom
Development and Membership Advisory Group (DMAG)
DMAG Chair: Memory Sachikonye
End 2016 Ferenc Bagyinszky became co-chair
to the group
The Development Membership Advisory
Group DMAG is the internal group dealing
with membership issues and internal working
Hepatitis Coordinator: Ludmila Maistat
TB Project Coordinator: Evgenia Maron
Working Group Chairs
Policy Working Group Chair: Bryan Teixeira
ECAB Chair: Giulio Maria Corbelli
Training and Capacity Building Working
Group Chair: Damian Kelly
The Staff Members
Executive Director: Koen Block
Financial Manager: Marie McLeod
Scientific Officer: Giorgio Barbareschi
Policy Officer: Ann Isabelle von Lingen
Project Manager: Mariana Vicente (replaced
temporarily by Maria Dutarte)
Events Coordinator: Nadiia Gaidak
Training Coordinator: Kristjan Jachnowitsch
Admin Support: Joris de Froidmont
Communication Officer: Tamás Bereczky
Alere International Limited
BioLytical Laboratories Inc
Civil Society Forum Initiative
Gilead Sciences Europe Ltd
HIV in Europe
Merck Sharp & Dohme
EATG permanent representations, member – and partnerships
AIDS Action Europe
pxROAR Europe (AVAC)
Collaboration of Observational HIV
Epidemiological Research in Europe - COHERE
Civil Society Forum on HIV
Civil Society Forum on Drugs
CSF OptTEST advisory board
EC Joint action on Hepatitis and Harm
EMA - Patient & Consumer Working Party
EMA – Paediatric Committee (PedCo)
EPF Board of Directors
EPHA Board of Directors
European Harm Reduction Network
European HIV Resistance Network
European HIV Testing Week Working Group
European HIV Hepatitis Conference
Forum for Collaborative HIV Research
Glasgow HIV 2016
PARTNER Study executive committee
STOP TB Partnership
TB Europe Coalition (TBEC)
WHO Civil Society Reference Group on HIV