The European AIDS Treatment Group (EATG) is a patient-led NGO that advocates for the rights and interests of people living with or affected by HIV/ AIDS and related co-infections within the WHO Europe region. Founded in 1992, the EATG is a network of more than 150 members from 45 countries in Europe. Our members are people living with HIV and representatives of different communities affected by HIV/AIDS and co-infections. EATG represents the diversity of more than 2.3 million people living with HIV in Europe as well as those affected by HIV/AIDS and co-infections.
EATG is an organisation driven by people living with HIV and key affected populations that is committed to equitable, timely and sustainable access to effective prevention, diagnoses, treatment and holistic care for all people living with and affected by HIV and associated infections and morbidities.
The scope of our programmatic work
We aim to engage, inform and empower all people living with and affected by HIV in:
- improving their health-related quality of life and holistic well-being throughout their life cycle
- increasing the usage of HIV, viral hepatitis, TB, and STI combination prevention and testing strategies in affected communities
- ensuring that ongoing research continues to yield best quality new HIV, viral hepatitis, TB and STI diagnostics, medicines, medical devices and care, as well as progress towards cure
A brief history of EATG
The birth of EATG began in March 1991, when the Terrence Higgins Trust (THT) in London met with Deutsche AIDS-Hilfe (DAH) to discuss holding a seminar as part of European Commission-sponsored series. Since DAH was the only organisation with staff working specifically with treatment, THT asked DAH to organise a seminar on AIDS and medicine. This became the first AIDS & Medication meeting. The head of DAH’s department of medicine and health policy, Matthias Wienold, after consulting with Nick Partridge (THT), Robin Gorna (European Commission), and two German activist friends, Andreas Salmen and Jürgen Poppinger, decided on a specific focus: treatment activism. At the time, few people shared this particular interest.
About a dozen activists attended the inaugural AIDS & Medication meeting in May 1991 representing Germany, the UK, and three other European countries. They discussed what treatment activism – primarily an American phenomenon – might look like in a European setting. In the wake of recent difficulties over DDI (Didanosine), participants were excited about the prospect of joining forces as an advocacy grouping. Three areas for action were identified: access to treatment, standards of ethical conduct, and treatment education and information. This led to the first European AIDS Treatment Agenda developed in time for the VII International AIDS Conference held in Florence, June 1991. The aim was to bring a European perspective on the treatment agenda, similar to the approach of ACT UP New York, and serve as a rallying cry for the European grouping and a basis for interactions with the pharmaceutical industry.
Other people gradually became involved in the nascent group, and participants began developing project ideas, including what became the European AIDS Trials Directory, the European Community Advisory Board (ECAB), and a newsletter, European AIDS Treatment News (EATN). At the second AIDS & Medication meeting, convened in Berlin, February 1992, participants formally inaugurated themselves as the European AIDS Treatment Group, comprising 19 members from nine EC countries and Switzerland, as well as observers from the European Commission and WHO Europe. The proposed constitution was passed unanimously, limiting membership to individuals rather than organisations, and with an annual membership fee of 2 German marks (about €1). A board was elected, consisting of Jonathan Grimshaw, Marc Regnard, and Matthias Wienold. Marc Regnard died shortly afterwards and was succeeded by Stephan Dressler. Matthias Wienold served as the first executive director, a post he held for three years. DAH agreed to host the secretariat and provide a home base.
In a membership appeal printed later that year in the EuroCASO Newsletter, Matthias explained why the EATG had been founded, stating that, “To date there [has been] a failure of national drug research and approval systems to produce results of clinical and therapeutic value that match the scale, character and urgency of the HIV epidemic.” He went on to describe five priorities for the EATG: changing the structure of research in Europe; improving access to information, medical services and experimental drugs; and facilitating pan-European communication on treatment issues.
By 1993, the group had grown to 30 members from 14 countries almost entirely in Western and Northern Europe. The AIDS & Medication meeting and the EATG General Assembly (GA) that followed were challenging due to language difficulties, hardball questions for company representatives, frustration with European regulators, and intense internal discussions. But the fact treatment activists were finally collaborating across national borders and engaging the industry and regulatory agencies showed that the EATG was solidly established and making its voice heard. Perhaps the final initial activity was the establishment of a secretariat in 1994.
As an organisation, EATG has evolved and adapted over the years. By 1997 the organisation had grown to become a network of over 100 AIDS treatment activists from 17 countries, and finally moved into its own office in Düsseldorf, which eased communication and disentangled its work from DAH. In 1998 the membership rolls were brought up to date, and the first membership handbook was developed, which over subsequent years would be revised a number of times. There was also the first major comprehensive organisational review that identified problems, obstacles, and opportunities. Passed by the GA, the recommendations included staff job descriptions, an ombudsperson, new working groups, an electronic office and protocols for elections, GAs, budgeting and events.
In 2004 EATG closed its Düsseldorf office and moved to Brussels in order to interact with EU bodies more effectively, and highlights of its involvement in EU activities during the year included participating in a ministerial meeting organised by Ireland when it held the EU Presidency, and joining the new HIV/AIDS Think Tank set up by the DG for Health and Consumer Protection (DG SANCO). This coincided the EATG strengthening its links with other advocacy organisations, with harm reduction and drug users’ groups from both eastern and Western Europe, and with networks of people living with HIV such as the Central and eastern European Harm Reduction Network (now the Eurasian Harm Reduction Network), Health Gap, the AIDS Treatment Activists Coalition, Gay Men’s Health Crisis, and GNP+.
The first EATG first Long-Term Strategy (LTS), for 2007-2010, was developed in 2006, and partly as a result of this the organisation was streamlined into just three working groups in 2007: the Policy Working Group (PWG), ECAB, and the Development and Membership Working group (DMAG). There were also two task forces, Eastern States and Capacity Building. This overall shape of EATG had remained in place for much of its existence and until 2020. PWG in particular now covered a broad range of interests, and by June 2007 it boasted 17 portfolios, including access to treatment and care, human rights, women, drug use, migrants, and eastern Europe. The increased level of policy activity led the organisation to hire a policy officer in 2007.
As of July 2012, the European AIDS Treatment Group had 112 members from 40 countries. In addition to its involvement in the EUPATI project, which addressed community involvement in scientific research and development, the EATG decided to focus more on co-infections, especially hepatitis C. Moreover, at the end of 2011 EATG published its 2012-2015 Long-Term Strategy, following up to the previous 2007-2010 LTS.
Within five years (2012 – 2017) in the WHO European region, over 180,000 people were newly infected with HIV. As in 2012, the epidemic in 2017 manifested differently in each of the internal European regions, as well as health system effectiveness, availability of treatment, and civil society’s response. Since 2012 there was a significant transition in global health, from the Millennium Development Goals (running until 2015) that had specific reference to HIV in MDG 6a (‘Have halted by 2015 and begun to reverse the spread of HIV/AIDS’) and MDG 6b (‘Achieve, by 2015, universal access to treatment for HIV/AIDS for all those who need it’) to the Sustainable Development Goals (SDGs). Here, HIV has been folded into Goal 3: ‘Ensure healthy lives and promote well-being for all at all ages’, specifically, ‘By 2030, end the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases and combat hepatitis, water-borne diseases and other communicable diseases.’ This transition was consistent with the realigning of global health broadly, but presented a challenge for advocacy-focused organisations such as EATG to keep HIV firmly on national, regional, and global political and health agendas. In addition, sufficient attention was still required to address the particular needs of key populations– a focus for which EATG is ideally placed.
EATG had also evolved in these five years. Membership increased, 112 in 2012 from 40 countries to 182 members from 47 countries in 2017, regional (new members were increasingly from Eastern Europe and Central Asia), and represented increasing diversity (for example gender was increasingly prominent as a topic focus). It comprised members working at multiple levels in their own countries, passionate about their work in HIV and making things better. There was also a shift in the knowledge levels, with a broader range of prior experience, and this had driven the need for EATG to strategise capacity development approaches with the launch of the Training and Capacity Working Group (TCWG).
The third Long-Term Strategy was planned for 2016-2018 but eventually it was extended to 2019, a year of intensive work in preparation of EATG’s transition to a new era. In 2019, EATG sees changes with a new Executive Director and the secretariat moving to a new co-working space in the heart of Brussels. 2019’s GA approved EATG’s fourth Long-Term Strategy. This edition would have a 6-year span (2020-2025) while it introduced three programmatic areas replacing the working groups structure: Quality of Life, Combination Prevention and Partners in Science.
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