THE EUROPEAN AIDS TREATMENT GROUP

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EATG 25 Years Anniversary Report

Henning Mikkelsen

EATG remains the only European-wide HIV activist network

Respondent, Membership Survey 2017

EATG is present everywhere, in every single HIV intervention around Europe. With the help of EATG, treatment and care are better, and testing options and prevention have improved.

Tamás Bereczky

My work with EATG and EUPATI allows me to meet many patient groups from all different disease areas on an almost daily basis. The role and traditions of HIV activism, and the name of EATG, come up as a point of reference literally every single time! This tradition has been created and cherished over not only the last 5 years but throughout the history of EATG. And it needs to be supported, actively nurtured for it is something great and important.

Ben Collins

I’d like to think that EATG is a mass organisation of activists that mentors, trains, and wins at the regional and the local level. I don’t know if that’s unique. There are regional groups that are trying to do the same thing. I think it would help if we were more explicit about that.

1. What is EATG?

In 2017, EATG remains the only member-led organisation of its kind in the European region, and as such is able to give a face to HIV in Europe. As an organization focusing on HIV, learning from the past and evolving, EATG’s community voice is a characteristic that mustn’t be taken for granted.

When I work with other patient organisations I have found how far advanced we are in the field. Elsewhere, for example, when patients come to conferences they are there because a box needs to be ticked, but they aren’t allowed in the room. This used to be case in HIV many years ago, but not now. We take for granted but it really is something that we’ve achieved and mustn’t take it for granted.

Indeed, according to Tamás Bereczky

In addition, EATG is essentially a volunteer, grassroots organisation, providing a level of vibrancy often a characteristic of national organisations but at the European level. The tapestry of EATG is made up of members who are from a wide range of backgrounds and levels of experience – some at the very beginning of their careers in the HIV sector, and others at a very advanced level with a depth of knowledge in science, training, and policy. With its melting pot of patient representation, mixed skillset, hard advocacy, and institutional memory, EATG is not only relatively unique in the European-level HIV sector, but also in the context of other diseases which, though seeking similar goals to EATG, lack the powerful concoction EATG offers.

BEING INVOLVED: PERSONAL STORY

I was diagnosed in 1996, and asked to be a member of EATG in 1998. I was formerly accepted in 1999. My first contact was ECAB. I had a background from previous life in biochemistry and science. So I would have some skills that would be useful for research, development and medical tools and clinical trials. My other life was in policy. I was active since 1984 in process and promotion of drug policy reforms, as in the south of Europe the population was mainly gay men but also IDU were most burdened by HIV. My link was not through sexuality but through questions of drugs. So as there were few people in EATG with expertise with drug policy and drug users, I started to work within the policy of EATG mainly on drug policy.

 

It was the time that there was a huge epidemic amongst IDU was exploding in EE and central Russia. I knew quite well the history and culture of the regions and I established relations with people from eastern Europe and local leaders, and it was a time when the Global Fund (GF) stated and there were new organisations from civil society and the community being set up.

Luis Mendao

How is EATG unique?

First of all EATG remains the only European-level HIV patient-led organisation that provides a direct conduit for members to access European level resources and policy makers, particularly in the European Commission. It unites members from one side of the European region to the other side (EATG currently stretches from its most Western point, the UK, to its most eastern, Tajikistan – a distance of 5600 km). This individual membership creates the main difference with a partner organisation such as AIDS Action Europe (AAE) that has a similar function. Though as a network of HIV organisations, rather than patients, it has a stronger focus on national level policies. With its mix of a Brussels secretariat, working with individual members, EATG has the potential to provide a stovepipe to the highest level of European-level policy making.

Other organisations with a similar focus located in Europe but with a global reach, include STOP AIDS, based in the UK, and in the Netherlands, the Stop AIDS Alliance and Stop AIDS Now! These have HIV policies as a central part of their work but have a global reach and arguably less activists, utilising softer advocacy than EATG. And are not patient-led.

Secondly, EATG is also able to react rapidly to events, generating member-led responses to significant events across the European HIV sector. This would be difficult for umbrella organisations to achieve in such short a time. With its activist approach, EATG is also able to speak forthrightly in policy forums – illustrated by ‘hard advocacy’ to promote issues in the prevention space, such as PrEP. EATG is one of the few organisations able to cultivate this form of activism in regional forums. There is also a mix of perspectives of the economics, a mix of politically left, and politically right, but all focus on the interests of the patient.

 

EATG therefore has the whole caboodle. It covers the spectrum of what a PLHIV needs, for those who can’t fight for themselves, providing support and training and parliamentary advocacy This is done with only a small number of permanent staff with a relatively small annual budget of less than €2m as of 2017. For new members, it can take a while to appreciate what EATG actually does and its range of activities.

We have good experience in working with patients, and empowerment – it stands out from other disease areas. We have the experience of how to make patients important – and also help them be confident and represent [their needs]. If we look at groups who are disadvantaged, they have to interact with people like politicians and researchers. We need to help how to represent [our] knowledge in more disadvantaged areas of Europe. [Kristjan Jachnowitsch]

Voice of the community and community representation

As a membership-led organisation, EATG is in a strong position to represent the community and be a strong voice for the members. EATG is ideally placed to speak on behalf of the HIV response and civil society in Europe, collectively a powerful advocacy tool. How much does EATG speak on behalf of the community?

 

A prime example of representation is ECAB, but of course there are other forums where the community voice is facilitated. For example at conferences, European level meetings, and of late EATG has also been asked increasingly to be a community partner within EU projects. As the only patient-driven European HIV organization EATG is in increasing demand, for example in the OptTEST project. Initially, community involvement was at risk of being tokenistic, but EATG now plays a more significant role – for example in vaccines work, and HIVACAR, a Spanish-led project exploring optimum treatments to find a cure for HIV.

EATG has consolidated the community voice, and now more or less all international agencies and key political decision makers recognise the participation of communities as advocates and leaders is essential to shape, implement, and design reforms and policies that should be implemented. This gives power to the EATG because of being a co-chair of the CSF, we are always invited to any big events, working groups around HIV, HCV, and TB.

Luis Mendao

The EATG strategy, developed in 2016, includes a primary issue facing the HIV community, that of HIV stigma. EATG responds when possible to issues facing PLHIV in the European region, for example in 2016, in support to Czech colleagues, EATG and partners reached to the Prague Public Health Authority, the European Commission, ECDC, 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 from public health and fundamental rights perspectives.

 Source: EATG Report 2016

For individual members, the impact of EATG in enhancing representation, and the community voice, can be significant. Members state that EATG increases knowledge and allows personal and professional growth. For a member from Italy, EATG “has enriched me in many ways. I have achieved competences and knowledge as an activist and HIV advocate. For example, I have been able to give a strong contribution in negotiations with AIFA (the Italian medicine agency) for access to HCV DAAs for co-infected people, and contributing to the HCV eradication plan implemented in March 2017. I would not have had the competences to do this if I had not been in EATG for the last 3 years.”

Mario Cascio

2. Where did we come from? A brief history of EATG – 1992-2012

Beginnings: how EATG began in 1992

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.

Evolution and growth – highlights: 1994-2012

As an organisation

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, for 2006-2010, 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 has remained in place for much of its existence. PWG in particular now covered a broad swathe 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.

 

Finally, as of July 2012, the European AIDS Treatment Group had 112 members from 40 countries. In addition to its recent involvement in the EUPATI project, which addresses community involvement in scientific research and development, the EATG has decided to focus more on co-infections, especially hepatitis C.

Information sharing: Conferences

EATG has a long history of presentations and session facilitation at conferences that articulate EATG’s mission and community experience. Some of the first included the 10th international AIDS Conference in Yokohama, Japan, and the International Congress on Drug Therapy in HIV, Glasgow, where Matthias Wienold spoke at the closing plenary. EATG’s collaboration with the Glasgow conference continues to this day. Shortly afterwards, EATG was represented at two other important conferences in 1995: the HIV Infection in Women Conference (Washington, DC) and the 6th International Conference on the Reduction of Drug Related Harm (Florence).

 

Other examples include facilitating sessions at the community forum on entry and travel regulations at the XVI International AIDS conference in Toronto, 2006, and a seminar at the Glasgow conference on the criminalisation of HIV transmission. This seminar paved the way for the EATG’s involvement the following year in a UNDP and UNAIDS consultation on the criminalisation of HIV transmission. Another core activity in 2006 was organising a conference, with a local NGO, in Lisbon on migrants’ and ethnic minority rights to HIV services, attended by 230 community participants from throughout the European Region. This prepared community recommendations for the Portuguese presidency of the EU, which had chosen migration as its overarching theme. The recommendations also formed the basis for Migration and HIV/AIDS: Community Recommendations, prepared by the Civil Society Forum and published by the EATG in 2008.

 

The EATG also played a pivotal role in the first conference of the HIV in Europe Initiative, held in Brussels in November 2007 that brought together scientists, policy-makers and community members to explore and address the causes of late HIV diagnosis and barriers to testing. The EATG assumed the role of advocacy secretariat for the initiative, a role it continues to play today.

 

As a final example, in 2009 the EATG organised a satellite community session in Glasgow, ‘Can HAART prevent HIV transmission?’ that produced a diverse mix of views on the Swiss Federal AIDS Commission’s controversial assertion that it can eliminate it. The next year, it would also sponsor a satellite symposium on the same topic at the 6th International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention in Rome.

Treatment advocacy: ECAB

A turning point in effective treatment was the historic 1996 11th International AIDS Conference, held in Vancouver. Here, the efficacy of combination therapy with protease inhibitors was first reported, and for the EATG offered a key focus for advocacy at the European level to ensure access to the new, potentially lifesaving treatments. EATG also discussed for the first time the idea of holding training sessions in southern Europe to educate new activists and increase community engagement.

 

In 1997 EATG organised its first European Community Advisory Board (ECAB) meeting. Other CABs were in existence, though as company-associated entities. Based on discussions at the 1994 AIDS & Medication meeting, EATG members decided not to represent individual constituencies, adopting instead an activist approach to clinical research and science based on a broader sense of community, embracing all affected groups throughout Europe. EATG’s ECAB was therefore established independently of individual pharmaceutical companies, and accountable to EATG and the community. It would take a number of years to establish the ECAB model that would become dominant, but the core principle of independence of, and engagement with, the pharmaceutical industry continues to the present day.

Capacity building – sharing and training

Sharing vital information with the community is a key role, and EATG in 1995 capitalised on the early growth of the Internet in 1995 by making EATN was made available electronically. In addition, some 650 hard copies of each issue of EATN were distributed free of charge throughout Europe, and within a year there were 1000 subscribers, including 120 libraries. It was the probably the most widely read treatment information newsletter in Europe. The EATN was largely supported during this period by grants from Hoffmann-La Roche on the condition of editorial independence – indeed, the firm was criticised openly and frequently by EATN, and this capacity to be objective in critiquing the pharmaceutical manufacturers has been an important characteristic of EATG.

 

Making publications available in languages other than English became possible in 1997 when finding became available, and thanks to EU support, the EATN was realised in four languages in addition to English (French, Italian, Portuguese, and Spanish). In addition, in 1998 the organisation launched the Continuous Patient Education Project (CoPE) to translate educational materials, an initiative that came to fruition in 2000. During 1999 EATG also purchased the web domain www.eatg.org

 

Since the early days of EATG, training has been a central part of EATG’s work. In the summer of 1997, EATG arranged its first training course for treatment activists in southern Europe, in Barcelona, and attended by around 100 delegates – primarily new treatment activists – from countries including Belgium, France, Greece, Italy, Portugal, Spain, Turkey, and the UK. These events continued in 1999, and expanded eastwards for the first time by arranging its first training event for treatment activists in central and eastern Europe, forming part of the Global Network of People Living with HIV/AIDS (GNP+) conference in Warsaw.

 

EATG’s training focus continued to expand, and in 2000 EATG organised the Trainers’ Working Group in 2000, sponsoring training conferences in central and eastern Europe. These included second training seminar for activists based in eastern Europe in Budapest, attended by 45 members of national NGOs. A third seminar followed in the same year attended by 70 NGO representatives in St. Petersburg. Both of these seminars targeted NGOs in the countries of the former Soviet Union, with participants coming from Belarus, Estonia, Georgia, Latvia, Lithuania, the Russian Federation and Ukraine. As a related initiative, CoPE worked with local NGOs in the region to translate educational materials, starting with a leaflet on combination therapy. Between 2001 and 2006, CoPE would fund 27 translation projects, the majority focusing on central and eastern Europe.

 

In 2003, EATG clarified its geographic focus to include the entire WHO European Region, comprising 53 member states. This explicitly committed EATG to addressing treatment issues connected with the world’s fastest growing epidemic, then in eastern Europe and central Asia – as it remains in 2017. This expanded focus led to the EATG organising – in partnership with the All-Ukrainian Network of People Living With HIV/AIDS – its fifth seminar for treatment activists in central and eastern Europe, this time focusing on access to treatment and harm reduction. Held in October 2003 in Kiev, the seminar was attended by 80 participants and featured an ECAB meeting dedicated to HIV issues in the region and enabled local advocates to meet with industry representatives to share concerns about access and pricing.

 

Training continued to be a focus, and In March 2008 EATG organised a training workshop in Kiev on national pharmaceutical procurement, supply, and reporting. In connection with the workshop, research was carried out in seven countries – Azerbaijan, Estonia, Kazakhstan, Kyrgyzstan, the Republic of Moldova, the Russian Federation and Ukraine – to focus advocacy work on pharmaceutical procurement and supply issues that were limiting access to treatment in the region. EATG also renewed its emphasis on training in central and eastern Europe. Drawing on the findings of an extensive pan-European study on treatment literacy initiatives and training needs in eastern Europe, it acted to improve its existing projects, in part by creating a trainers’ pool.

 

Two final examples provide insights into EATG’s training focus. In 2010 ECAB organised a meeting focusing on the clinical aspects of TB and clinical research on TB/HIV co-infection, designed to serve as training for the European patient community and to help develop an advocacy agenda for them in the WHO European region. In June, it held a workshop on generic medicines in Kiev with the eastern Europe and Central Asia CAB. ECAB began collaborating specifically with the Russian CAB during the year, advising them and sending representatives to their meetings.

 

Finally, in the same year the EATG organised three trainings on HIV treatment literacy and advocacy in partnership with local community groups. The training in Kiev was held in conjunction with the All-Ukrainian Network of People Living with HIV, the training in Tallinn with the Estonian Network of People Living with HIV and the training in Bucharest with Senz Positiv Romania.

Policy and treatment in Europe

The year 1997 was also the start of the Lobbying Working Group (LWG), later to become the Policy Working Group. With its formation, EATG was no longer just trying to stimulate treatment research; it also began to work politically for treatment access. The working group initiated formal contacts with several directorate generals (DGs) of the European Commission, and became central to EATG’s work over the coming years, engaging more with both the European Commission and European Parliament, including an EATG-hosted meeting at Parliament on 24 May 2000 where EATG explained its vision for the role of HIV organisations and the need for prioritising the HIV on the EU health policy agenda. The group was renamed the Policy Working Group (PWG) in 2004 and at the same time EATG was selected to represent civil society in the drafting panel of the Dublin Declaration[1] that month, and was successful in influencing the final statement; the PWG also contributed substantively to the Vilnius Declaration later in 2004.[2]

 

A key event for the group was In 2011 when it organised its first five policy dialogue meetings, starting with one in Riga to follow up on discussions of the HIV situation in Latvia and Lithuania, particularly in light of the 2009 and 2010 UNODC country visit reports. The Hungarian Civil Liberties Union helped set up a second policy dialogue meeting in Budapest on the situation in low-prevalence countries, which was followed later in the year with a meeting in Belgrade to discuss how to address the problems in central and south-east Europe (low-prevalence countries) delineated in the Budapest Declaration, and a meeting in Bucharest. The other policy dialogue meeting, held earlier in Brussels, focused on HIV policy recommendations for the EU arising from the second and final phase of the Correlation Network project.

 

EATG contributed to a growing number of policy forums from its early days. In 2003 EATG engaged with several major UN bodies for the first time. It also played a key role in developing the joint statement released by NGOs attending at the World Trade Organization’s Fifth Ministerial Conference in Cancun. EATG was involved in the bulk of formal motions and outside demonstrations during the meeting and participated in the high-level meeting devoted to the 3 by 5 Initiative, arranged in Geneva by the WHO, the Global Fund, and UNAIDS.

 

One of the most significant European policy-focused activities was birthed at a meeting with DG Sanco in May 2005, where EATG and AIDS Action Europe organised a consultation with NGOs on the EU’s new approach to HIV in its member states and neighbouring countries. A chief outcome was the establishment of the Civil Society Forum on HIV/AIDS to complement the work of the HIV/AIDS Think Tank, which primarily consisted of government representatives. After initially having observer status EATG and AIDS Action Europe ultimately became co-chairs, a role in which they remain in 2017.

 

EATG helped WHO Europe to initiate and oversee the drafting and publication of the first progress report on the Dublin Declaration published in 2008, assessing how well European countries were delivering on actions they committed to in 2004, and providing a roadmap of what they needed to do next. EATG followed up in 2009 with an event in the European Parliament to demand that governments make good on their commitment to monitor their implementation of the Dublin Declaration.

 

In its role as the advocacy secretariat of the HIV in Europe Initiative, EATG organised in 2009 a roundtable in September with members of the European Parliament (MEPs) and other policy-makers, calling for a comprehensive EU strategy to promote early diagnosis, reduce barriers to testing and ensure earlier treatment and care.  It led to the parliament passing a joint resolution on HIV in November with an unprecedented majority.

 

As a final example, in 2009, the PWG developed policy recommendations within the framework of the Correlation II project (2009–2011), which tackled health inequalities in Europe. EATG became more involved in the AIDS & Mobility project by developing an innovative health education model for migrants and ethnic minorities.

 

[1] Dublin Declaration on Partnership to Fight HIV/AIDS in Europe and Central Asia (2004). Available here: http://www.euro.who.int/en/health-topics/communicable-diseases/hivaids/policy/guiding-policy-documents-and-frameworks-for-whoeuropes-work-on-hiv/dublin-declaration-on-partnership-to-fighthivaids-in-europe-and-central-asia

[2] “Vilnius Declaration” on Measures to Strengthen Responses to HIV/AIDS in the European Union and in Neighbouring Countries (2004). Available here: http://ec.europa.eu/health/ph_threats/com/aids/docs/ev_20040916_rd03_en.pdf

 
 

3. Synthesis – where are we now? 2013-2017

Which brings this history to the most recent period. What has happened since 2012?

‘Times there are a changin’

Five years is a long time in the HIV sector. Since 2012 in the WHO European region, over 180,000 people were newly infected with HIV.[1] As in 2012, the epidemic in 2017 manifests 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 has also been 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.’[2] This transition is consistent with the realigning of global health broadly, but presents 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 is still required to address the particular needs of key populations[3] – a focus for which EATG is ideally placed.

 

EATG has also evolved since 2012. Membership has increased, 112 in 2012 from 40 countries to 182 members from 47 countries in 2017, regional (new members are increasingly from eastern Europe and central Asia), and represents increasing diversity (for example gender is now increasingly prominent as a topic focus). It comprises members working at multiple levels in their own countries, passionate about their work in HIV and making things better. There seems also a shift in the knowledge levels, with a broader range of prior experience, and this has driven the need for EATG to strategise capacity development approaches with the launch of the Training and Capacity Working Group (TCWG).

 

[1] Source: ECDC 2017 statistics – https://ecdc.europa.eu/en/hiv-infection-and-aids

[2] The UN Sustainable Development Goals – 17 Goals to Transform Our World. Online at: www.un.org/sustainabledevelopment/health/

[3] International HIV/AIDS Alliance (2017). Community action is vital to achieve the Sustainable Development Goals. Online at: www.aidsalliance.org/news/954-community-action-essential-to-deliver-the-sdgs

 
 
 

EATG has grown. It is diversifying and it should be faster. It has involved more members from central and eastern Europe, and central Asia. The training work group has shown an ability to draw in new activists. EATG has reframed its structure, creating transversal projects. The change has been for the good. I would like to think that EATG is becoming a bit more transparent and internally coherent. [Ben Collins]

From a membership point of view, EATG is indeed diversifying. The organisation has been acutely aware of the need for equal representation of affected groups at least since 2001, when internal data confirmed that representation and diversity should be a key goal within the organisation since major key populations affected by HIV were underrepresented at that time, such as BME, migrants, people who inject drugs, women, heterosexual men, parents of HIV-positive children, young people, sex workers, and eastern Europeans.

 

Diversity has been strongly evident particularly since 2012. This has included geographical diversity, age, and gender. Gender has been a topic for discussion in EATG since at least the early ‘00s. At the GA in 2001 members heard a report from the ‘XX’ group. XX was a subgroup of ECAB and launched in 2000 to provide a dedicated focus on treatment issues affecting women. Whilst the focus was specifically on treatment, this was one of the first examples of a gender-specific grouping in the organisation. Since that time, gender equity was sought in EATG recruitment processes, topics for discussion and flagged as a membership issue, but this gained little purchase in the organisation as a central strategic priority that focused on women. Historically, the HIV movement in Europe and the Global North has been dominated by gay men. Indeed, being gay has been an essential part of this, and therefore it has been even more difficult for women, despite all the inclusion efforts, to effect their interests.

 

In some ways, 2013 can be seen as a turning point. At the GA that year a presentation by Evgenia Maron[1] highlighted specifically the social and psychological needs of women affected by HIV and, when taken globally, the equivalence of HIV prevalence between the genders. The following year, two women were voted by the membership to the Board of Directors. In the same year, a women’s group was established which, unlike the first women’s group in 2000, would have a remit outside of treatment issues but more on the special challenges facing women living with HIV and the need for gender sensitivity. As of 2017 the women’s group continues to operate and women have an increasingly equal role in EATG, epitomised in Jackie Morton’s appointment in 2016 as chair of the Board of Directors. The risk of tokenism, and the need to include non-male genders in core areas of decision-making and influence, is a challenge for all NGOs. EATG is not unique in this, and has taken steps to correct gender imbalance, but progress still needs to be made, especially – broadly – around the core principles of feminism and, specifically and as an example, the provision of childcare at certain meetings. As of 2017, a new group focusing on the needs of women living with HIV, ‘EATG 4 Women’, was launched.

[1] See GA Report from 2013

 

The 'EATG 4 Women’ portfolio was first introduced by Olimbi Hoxhaj during the time she was a member of the BoD (2013 – 2015) and has been supported by the members who followed her in the BoD, Sanja Belak and Jackie Morton (2015-2017). So far it has had two appointed coordinators, Aisuluu Bolotbaeva and Christina Antoniadi as well as two advisory committees.

Women living with HIV and affected by HIV have over time played a critical role in the HIV epidemic response. The results produced by their involvement have been unimaginable in some cases, such as the elimination of vertical transmission, an achievement for many countries today, and their leadership abilities have been proven quintessential in engaging entire communities in the prevention and/or retention to care. Nevertheless, EATG identified gaps in representation of specific women’s needs within social and clinical science, as well as advocacy needs and lack in policy recommendations in recent years. That was the main driving force for creating this portfolio.

 

The ‘EATG 4 Women’ portfolio has managed in a very short time to identify gaps in representation, in clinical trials and research both in participation and leading roles and to give voice to women within EATG. It has contributed to the engagement of women living or affected by HIV of all geographic regions and backgrounds. In the next steps, this portfolio will seek strategies to promote their leadership and seek meaningful participation to build capacities and networks in all our initiatives, where identified gaps are highlighted and engage stakeholders in providing a more effective response to keep women at the centre of the EATG’s work.

PERSONAL STORY

As a trained nurse, I had worked my way through many structures of the National Health Service in the UK, managing and leading many different professions, such as GPs, hospital consultants, nurses, dentists, therapists, administrative staff, and allied health professionals. In 2009, my life took a dramatic change as I moved into the world of living with HIV. It was like a parallel universe from the world where I had lived for 56 years. I found men and women discriminated against for their sexuality or colour, stigmatised because of being diagnosed with a life-threatening disease, and neglected by political masters because of society’s view of HIV. I felt driven to challenge these injustices at the highest possible level and, after retiring from the NHS in 2011, I dedicated my time as a volunteer to the HIV community.

In 2013, I met Brian West during a conference run by HIV Scotland, of which I was chair at the time. I was thinking of broadening my experience but I wasn’t sure in what way. Brian and I met for lunch in Edinburgh where he outlined the work of EATG, highlighting the need for more women activists in Europe. He invited me to apply to join EATG. I felt there must be some way I could use my knowledge and skills to strengthen and raise the profile of women, and men, affected and infected with HIV across Europe, so I joined in 2014. I didn’t really know much about EATG, so I read all I could but still felt inadequately prepared to become an activist alongside these very knowledgeable, educated, and pioneer activists, many of who had lived through the early years of the disease. What could I bring to this advanced group, predominantly of men and a smaller number of women? I’d being assigned to ECAB and attended my first ECAB meeting in early in 2014. Whilst I enjoyed learning more about the background of medicines and pipelines, it seemed a totally new language.

 

I didn’t know what a civil society forum was or how a membership organisation could influence parliamentarians across Europe. The issues seemed so vast, Europe so huge, the health systems so different to what I had been used to, and I grappled with what I could bring to the organisation.

Being a ‘people’ person, my inner nurse antennae were constantly on overdrive trying to find my forte in EATG. At my first General Assembly in 2014 I listened to a presentation on STEP-UP and realised this was where I could use my skills, so I joined the Training and Capacity Working Group.

 

At my second GA in 2015, I was approached to put my name forward for the board, and became a board member the following year. During my first year I struggled with the organisation’s governance so, at the end of the year, I presented to the GA an option to review the current governance model. In 2016, the board members chose me as their chair and I now feel I’ve found my forte. Leadership is what I do and I remain passionate to work with our members across Europe to focus on where we can be most effective.

 

The world is changing for people living with HIV with its classification as a ‘chronic’ disease. But as the economy shrinks, and funding streams become more competitive, we still have many areas within Europe with high HIV prevalence. It will be interesting to look back in 5 years’ time to see what impact EATG has had. But in the meantime, it’s a pleasure to be the EATG’s chair in its 25th year of operation.  

Jackie Morton

HIV of course affects other groups, and EATG continues to strive for better representation from e.g. migrants, BME groups, sex workers, drug users and other key affected populations (KAP). EATG’s expansion into the east of Europe and central Asia allows countries in the former Soviet Union to, according to one member, “Explain their plight to people outside of those places, helping with advocacy issues related to HIV, care, and treatment.”

 

During this period, EATG has explored ways to make its governance more effective in order address the needs of the membership, and respond to external changes within the HIV sector having significant impact on the focus and modus operandi of EATG. These include challenges around funding, the increasing dominance of prevention science (e.g. PrEP, and TasP), rising levels of co-infections (for example hepatitis C). Responding to a core need at national and local level for education and support on HIV-related issues, especially in countries where there is need for local capacity building, drove EATG to seek new ways of community engagement and empowerment.

 

Another key change since 2012 is financial. Whilst EATG’s budget has expanded since 2012, sources of funding are becoming increasingly difficult to find, forcing EATG to explore additional, more creative ways to support its work, including a gradual shift towards more project-based activities. Communication remains a vital constituent and EATG moved in 2013 to appoint a Communications Coordinator to improve internal information sharing and transparency. Since then, communication within EATG has expanded through the use of Facebook, Twitter, and YouTube videos of capacity building events, and the uploading of webinars.

 

A key document, in 2016, was a new EATG strategy, ‘Intensifying Our HIV Activism In Europe’ (2016-2018). The strategy includes 7 strategic goals for EATG, and as a member-led product the strategy articulates perhaps more than any other document the collective vision for EATG. The goals broadly indicate that EATG aims to ensure internal structures are fit for purpose, and that communities have influence and are trained to be activists. Perhaps most significantly, it will target resources on access gaps and specific key populations. The strategy helps EATG adapt to a rapidly changing environment, and promotes a broad approach to HIV advocacy.

 

The mission of EATG’s strategy is clear: ‘To achieve the fastest possible access to state of the art medical products and devices, and diagnostic tests that prevent or treat HIV infection or improve the quality of life for people living with HIV, or at risk of HIV infection. In responding to HIV, the EATG will also consider diseases frequently seen as co-infections in persons living with HIV, as well as other health issues that increase the risk of HIV infection’. This core mission hasn’t changed – particularly in the strong focus on the rights of the patient – but the context in which the strategy is being operationalized is turbulent and changeable, especially as EATG engages with countries – often in the east of Europe, and central Asia, where the sector – and civil society – are very different from those in the west of Europe.

Younger members are joining from different countries that didn’t seem well represented when I joined. I’ve seen people coming from very different fields and communities. What fascinates me about EATG is the openness towards everything that is not mainstream. It is an open and liberal approach that sometimes you don’t see in other, similar communities. EATG is more open and progressive. I’m drawing parallel with the LBGTI community because there is an overlap (MSM is the largest group). This is a group who are best represented in EATG. We also now need to focus on other groups and communities who are marginalised and neglected, for example women.

Andrej Senih

The diversification of EATG, especially in the nature of new members, is strengthening the breadth of EATG’s work, and offering new opportunities for capacity building for people who may work and live in countries where it is not easy to be open about a positive HIV status (or to work in the HIV and HCV fields). There is also an increased need for translation to Russian or other regional languages, and a future challenge for EATG will be to include those who have a working knowledge of HIV and policy but who don’t speak English (a common requirement in the past) in local and regional initiatives.

Capacity building

“[There’s been] a huge change and scale up of these activities, which are good. Going back to my local organisation, which benefited by having one of our staff members attending STEP-UP. We used the EATG for COPE projects a couple of times to produce valuable materials in local language for PLHIV. What is new is the scale up and capacity building.”

[EATG Membership Survey, 2017]

“As an EATG member, starting 2014, I am in a privileged position to access first-hand information, resources and knowledge accumulated by the global HIV movement. Using all of these I become more reliable in my daily activities as a social worker and HIV activist, especially when I interact with health care providers, pharma companies, and of course in relationships with my clients.”

[Ioan Petre]

Since 2012 there has been significant investment in EATG’s commitment to structured training. EATG recognized the need to develop community activism at the local level and one example of this commitment is the EATG Training Academy Website.[1] EATG has developed and launched the Training Academy Website in 2016 that contains all information about past, current and future training projects of EATG and provide access to all training materials that have been developed and facilitated by the EATG. For one member, they state: “I have grown professionally and personally through learning and sharing experiences from my peers in EATG.”

 

The launch of the TCWG in 2015 established a focused and strategic approach to training and education, with a significant financial investment in programmes and events. Associated projects such as Continuous Patient Education (CoPE) and M-CARE, which is aimed at migrant African communities, are both designed to increase the capacity of affected people. The latter in particular is innovative, for it works to improve the capacity of key community leaders to further education and support local members and improve migrant community involvement in treatment related advocacy and activism. The project, with EATG working in collaboration with European African Treatment Advocates Network (EATAN), has held two meetings in 2016 and 2017.

 

The strategic approach to training is perhaps best illustrated in two core projects, STEP-UP, and the Ageing wit HIV Project. STEP-UP is a five-module, year long training course developed and delivered by the EATG. It was been designed to provide HIV education and personal development training to people who have an aspiration to become more active within the HIV community in Europe and central Asia. The aim is to help nurture the delivery of projects and activities across Europe, which will amplify the patients’ voice and motivate policy makers and governments to ensure HIV remains high on the agenda. The first intake of students was in 2013, and since that time around 20 advocates have completed the course per year. Evaluations undertaken so far indicate the course has clear benefit for participants.. Further, more longitudinal, evaluations are planned. STEP-UP participants in 2017 originated from a wide range of countries in East, Central, and Western Europe, and Central Asia[2], such as Malta, Poland, Ireland, Turkey, Belarus, Kazakhstan, and Uzbekistan. By increasing access to EECA communities in particular, STEP-UP has enabled activists to strengthen advocacy competencies.

 

[1] EATG Training Academy: https://www.eatgtrainingacademy.com

[2] STEP-UP internal statistics, 2017

 
 

KEY EXAMPLE: STEP-UP

STEP-UP represents a significant achievement of EATG, in its reach and its potential impact. Whilst other components of EATG’s work also represent key engagement with the European HIV sector, it is STEP-UP that is preparing the next generation of young activists. Activism is not new, of course, but bringing them together into one place for one course can galvanise and unify activism. One outcome has been increasing numbers of Checkpoints, which EATG (via STEP-UP) has contributed to. Community activists are now taking the battle to the national level. For one member: “The Training Academy is in my opinion the best EATG achievement. Implementing these training programs has helped EATG access funds which in return help the organisation to function daily, which is [acceptable] as long as we are delivering a good and useful ‘service’ to other HIV communities.”

Maxime Journiac

The Ageing with HIV Project aims to address the challenges and the unmet needs of PLHIV in a lifecycle perspective. It has 3 phases: PLHIV aged 50+; Children and adolescents; PLHIV for more than 10 years aged 18-40. For each phase, there are webinars, and a conference, bringing together expertise, and affected communities. The ageing project has put ageing on the agenda across Europe, and highlighted tensions and barriers in the care and support of different age groups of people living with HIV – for example, condoms being too expensive for young people to buy in Romania, or the complexities of ‘polypharmacy’ in PLHIV over 50 years of age. Two conferences have been held so far, and what has been most significant is perhaps the involvement of the community in planning, preparing, and leading sessions during the events, alongside researchers, doctors, social workers, and psychologists.  As validation of this vital focus, at the AIDS2016 Conference held in Durban, South Africa, several sessions and satellites featured ageing with HIV. The EATG’s Ageing with HIV Project was mentioned and promoted several times.

KEY EXAMPLE: AGEING PROJECT CONFERENCE #1 APRIL 2016

According to a press release reporting from the first ageing project conference in 2016, with the rate of people living with HIV (PLHIV) over the age of 50 years constantly increasing, and also the rate of new HIV diagnoses in this age group growing constantly, there is an stronger need to consider the biomedical and social, treatment related and political needs of this population systematically and in a targeted way. More than 90 participants gathered in Berlin, Germany for an intensive meeting of three and a half days.

 

Some of the key findings of the conference pointed out how HIV treatment drugs are developed with primarily a younger population in mind: people with HIV aged 50 or older often have other diseases that may affect the way drugs work in their bodies. Specific studies on drug-drug interaction and on renal function in elderly people living with HIV are needed, as well as the parallel, holistic consideration of biological and social factors in the lives of PLHIV, the need to focus more on specific populations such are older women, migrants and trans* persons, and the need to educate health care providers about ageing related issues, co-morbidities and polypharmacy. Maintaining a healthy lifestyle, including physical exercise and smoking cessation were also mentioned several times as key factors. Special attention is needed as very few HIV tests are performed in the 50+ age group, and the rate of late presenters is alarmingly high.[1]

 

[1] Source: EATG Press Release – 8 April 2016: www.eatg.org/wp-content/uploads/2016/05/Ageing_Conference_PRESS-RELEASE_rev.pdf

Through the increased emphasis on training in EATG, there is a new generation of advocates, supported by increasing numbers of targeted publications and resources that are being translated the CoPE project.

“Training has been a huge success. It needs to be. There’s a generation of people like me who are aware [of] activities in the early days and are self-taught. There’s a different generation now so we need to be doing that, and mentoring.”

Brian West

Training has also allowed EATG to strengthen its programming beyond ‘just’ HIV, but to include co-infections, quality of life, ageing, living with stigma, and taking what has been learned and focusing on the entire lived experience of PLHIV.

KEY EXAMPLE: EUPATI [Tamás Bereczky]

Whilst falling outside the remit of the TCWG, EATG is involved in other projects that focus especially on developing the expert patient. The European Patients’ Academy for Therapeutic Innovation EUPATI (www.eupati.eu) was established in 2012 as part of the European Union’s Innovative Medicines Initiative. “It aimed to trigger a major rethink in the way patients and the public understand the medicines development process and their own involvement therein. Armed with a deeper understanding, patient experts and advocates will be empowered to work effectively with the relevant authorities, healthcare professionals and industry to influence the medicines development process for the benefit of patients.” – states the project’s closing report from early 2017. EUPATI also continues as a public-private partnership led by the European Patients’ Forum (EPF).

 

The key achievements of EUPATI include the development and organisation of two patient expert courses for a total of 96 patient advocates from a wide array of disease areas, who have gone through a rigorous online and offline training course of 14 months to become trained experts in medicines development and clinical trials, so that they can participate as equal partners in data safety monitoring boards, ethics committees, trial design and regulatory processes. The third training course will start in September 2017. Another key output has been the EUPATI Toolbox, which is a collection of several thousand pages of educational materials and encyclopaedic knowledge about medicines development and clinical trials, and has reached more than 200.000 individual users by mid-2017. EUPATI has also developed guidance documents for the interactions of the various stakeholders in the biomedical research and regulatory processes.

 

Essentially an educational project, EUPATI has been successful in bringing together all four stakeholders involved in the medicines research and development process: the regulators, the pharmaceutical industry, patients and academia. All decision making and content production bodies and committees of EUPATI have been based on the parity principle of these four partners.

 

So far, one EATG member has graduated from the patient expert course. EATG members Koen Block and David Haerry were members of the EUPATI Executive Committee in its first stage. David Haerry was also the internal project leader for EUPATI, while Scientific Officer Giorgio Barbareschi was leading the sustainability work package. Giulio Maria Corbelli and Tamás Bereczky were members of the EUPATI editorial board. Tamás produced the advocacy training modules for the patient expert training course, while Giulio also worked as trainer and facilitator in the face-to-face training events. In stage two, Giulio remains on the editorial board and the course faculty, while Tamás is the Steering Group member and communications lead on behalf of EATG. Several EATG members have worked as content developers and reviewers during the project.

 

In terms of volume and time, EUPATI has been one of the largest and most comprehensive transversal projects that EATG has been involved in in the last 5 years, and it has also been one the first major EU-funded projects next to OptTEST.

Treatment advocacy: Increasing focus on access, pricing, and affordability

In 1992, EATG was created to maximise the availability of treatments. This was in a context – western Europe – where there are relatively wealthy health systems and the need was for pharmaceutical companies to produce the medications that could be purchased by national governments. Aware of the needs of particular areas, EATG in 2001 founded a new group, the Access Working Group, to focus on increasing access to treatment in eastern Europe and low-income countries.

 

The situation now in 2017 is markedly different, mainly as a result of EU expansion (eastwards after the fall of the Iron Curtain) bringing in countries with less effective – and less wealthy – health systems. Now that the efficacy of treatments has been established, the challenge is for PLHIV to gain access to treatments. EATG membership from these countries, affected countries is increasing, and this has required EATG to shift emphasis – a process that has been gradual since the early ‘00s, but especially since 2012. EATG developed in 2011 a position paper on access – which overlaps with issues around pricing and adopting a more activist approach to maximising access, rather than targeting demands just on government provision of treatment.

 

A particular internal impact has been on the work of ECAB. Here, though the scientific work of ECAB is not finished, there is a quantifiable shift towards implementation, and addressing issues such as drug availability, stigma, and outcomes, and asking questions such as: Where are governments not helping people? Where are drugs taking too long to work through system? Where are drugs not available? Where are people being discriminated against? EATG’s expansion into eastern Europe has raised the prominence of these key challenges.

 

This has also highlighted the division across Europe – where in the West complex discussions can be had about refining treatment regimes, expanding treatment as prevention, or clinical trials, for many countries in the East the major challenge is getting access to treatment in the first place. This illustrates the need to explore strategic interventions and targeted advocacy initiatives that match what is required locally, rather than decided centrally.

 

EATG since 2012 has also established an increasing focus on affordability, with the formation of a member’s group, and the role of affordability coordinator in 2015, and, in a related role a hepatitis coordinator in 2014. According to an EATG policy review released in 2015,[1] “over the last five years significant organisational attention has been focused internally, undertaking discussions and processes to define EATG’s role in medicines affordability, including approaches to pricing policy and challenging barriers such as overly stringent intellectual property regimes.”

 

This has included strengthening members’ knowledge and capacity on pricing policy and intellectual property issues. Pricing will continue to dominate affordability activities and discussions, especially as politicians and patients grapple with austerity measures in many European countries, and the barriers to access, for example, relatively expensive viral hepatitis treatments. Also, in 2016 the first of a planned series of webinars on affordability was offered, which addressed issues such as 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 the Medicines Patent Pool, limits, improvements and red lines towards industry) and the underused possibilities of compulsory licensing (also including for prevention).

 

Pricing of medicines in particular has become a core issue in improving access, and illustrates the paradigm shift from EATG’s early years, where the provision of treatment was a primary aim, to the current where treatments are available but for countries, especially in the east of Europe, simply too expensive unless pricing is adjusted, or generics available. The capacity building of many eastern European and central Asian activists, especially around pricing mechanisms, has been a priority, and one that EATG is still engaged with.

 

[1] Internal EATG report: European AIDS Treatment Group’s Policy Efforts: Perceptions and Feedback from Members and Partners on Working Methods (2015)

Wrangling pharma: ECAB

EATG has shown over the years that you can and should cooperate with the pharmaceutical industry in a meaningful and productive way, and that ethical stance and consistent work will prevent you from becoming a slave to industry money while accepting donations. We often tend to forget about the scientific involvement of members. ECAB and the projects managed by EATG have yielded several important contributions to science, formally and informally.

Tamás Bereczky

ECAB continues to provide important fora for discussion and liaising with drug companies to advocate for treatment availability – indeed, the ECAB model is a key achievement and is now used in other disease areas such as TB and hepatitis but also in other areas such as diagnostics or generics. The concept that patients are actively involved in the process of pharmaceutical development and biomedical research not only as passive participants of clinical trials but active advisors and consultants is still relatively new but no longer unusual.[1] In the last five years ECAB continued to provide a core connection between the community and pharma. The model demonstrates that the community learn, and get their ‘teeth into hard subjects’, taking a lead on issues impacting on them directly, for example appraising clinical trials.

 

The focus on science and innovation is strong in ECAB and in 2015 EATG was engaged in a number of projects. One of these, the EmERGE project (Evaluating mHealth Technology In HIV To Improve Empowerment And Healthcare Utilisation: Research And Innovation To Generate Evidence For Personalised Care) has the aim develop an mHealth platform to enable self-management of HIV in patients with stable disease.  The platform will provide users with web based and mobile device applications that interface securely with relevant medical data and facilitate remote access to key healthcare providers. Led by the University of Sussex, UK, this is one of a number of academic projects EATG works with.

 

As of 2017, ECAB has around 5 meetings per year – three for HIV and two for HCV, and this very EATG notion that ‘expert patients’ are able to be in a position to challenge drug companies on what is best for the community remains rare in the health sector.  ECAB is also shifting to address additional themes such as diagnostics. In 2016 22 EATG delegates and community representatives attended the first thematic ECAB on diagnostics, held from 17-19 June in Bologna where community members discussed possible solutions to perform (rapid) point-of-care (POC) testing and/or screening for HIV and other infectious diseases in community settings.[2]

 

[1] EATG: The Impatient Patient: from Anger to Activism. Bereczky T. (2013) The Impatient Patient – A discussion of patient involvement in novel forms of knowledge production – a case study of the European Community Advisory Board on HIV/AIDS. Socio.hu, Special issue in English 1, 1–21. http://dx.doi.org/10.18030/socio.hu.2013en.1.

[2] Source: EATG Office report June 2016

KEY EXAMPLE OF SIGNIFICANT CHANGE: PROTOCOLS

PROTOCOLS 1

[also in activities/achievements]: Going back to when I was on BoD, our protocol review team had an effective job of working with US colleagues (ATAC) to make sure one drug company changed their research protocol to benefit patients.

 

[One drug company] were refusing to change their protocols. We said the process shouldn’t have got to this stage without consultation. In the end they did change so we had an impact on the protocol review and the science – BUT another company still doesn’t let us review. These are protocols for trials, and we were instrumental in changing some of them. For example, they used to have low cut off level for CD4. We proposed that this is a medical trial, and if dealing with people who have been diagnosed late with a low CD4 count they should be put immediately onto the best treatment rather than enrolling in a trial (which would take time). We suggested there should be no one with CD4 count of less than 250 enrolled. In the end, this was good for [the drug company] as the results were more positive than others because there were not so many people enrolled with a low CD4. Part of their reluctance was that in US, where the health system is screwed up, at the time it was an easy way to get treatment.

Brian West

If we don’t like it we can get things changed during protocol reviews, and access to drugs when trials have finished. Until drugs are available we need to make sure people keep the drugs. It’s important to highlight the impact of protocol reviews. We need information on trial participants, their rights, drugs used and the dosage, and the whole trial structure. If we can change this, then it means people who need this treatment get it. People don’t have to wait. For example, due to a co-infection a lot of people were excluded from a trial, but after some recommendations and key changes they are now included into the trial. One case stands out – HIV and TB co-infection. There were so many exclusion criteria, but we got most of them out. It took a lot of work but we went back to look at the TB guidelines that were linked with HIV. Hepatitis B and C were now included, people with low CD4 counts were included. One of aims of the protocol reviews is to get more people on treatment.

 

Damian Kelly

PROTOCOLS 2

Policy and prevention

The Policy working group continues to be an important forum for discussing key issues. In the future an avenue to explore could include the group working closely with the BoD and the secretariat to clarify and promote policy positions that EATG can adopt. This was illustrated by the PrEP discussions, and cross cutting issue-based working is much more likely in the next five years. This would also enable the strategic allocation of EATG’s limited resources, especially in close collaboration with other working groups, and EATG governance frameworks.

EATG’s first position paper on prevention was released in 2009. Though EATG has been engaged with various prevention technologies at least since 2001, when ECAB meetings addressed vaccines, forming the basis for a booklet that the group published two years later. In October 2003, the EATG presented a poster at the 9th European AIDS Conference in Warsaw, summarising information from the European Therapeutic Vaccine Trials Database. In 2002 there was also a Vaccine Working Group (formed in 2002) became the New Preventive Technologies Working Group, which, together with the recently formed eastern States Working Group, sponsored a training workshop on HIV vaccine clinical trials in eastern Europe in October 2005. The new technologies group also worked with ECAB to organise an ECAB meeting on microbicides in December 2005. Finally, in 2010, as the community partner in the EUROPRISE consortium, EATG organised a multi-stakeholder community meeting on pre-exposure prophylaxis (PrEP) research and development priorities. It also developed a series of multilingual patient-friendly information leaflets to help potential study subjects make an informed decision about enrolling in the NEAT 001 trial that started recruiting patients in 2010.

 

Since then, a number of issues gained particular prominence in the prevention debate, such as PrEP, therapeutic vaccines, cure strategies, and expanding access to microbicides. In 2015 EATG released their second position paper reflecting the consensus of the EATG membership on HIV prevention, particularly in relation to new advancements in the field.[1] EATG’s commitment to prevention included leading a satellite session at the 2014 International HIV/AIDS Conference in Melbourne, where Brian West chaired a meeting on ‘The use of antiretroviral treatment for prevention: the role of community, tensions and ways forward’ which illustrates EATG’s role in connecting communities with treatment as prevention initiatives. The 2014 conference also provided an opportunity for the release of a Community Consensus Statement from community organisations and actors, and at the 2016 GA Prevention Coordinator Gus Cairns outlined the possibilities – and challenges – in the HIV landscape, especially for prevention, locking prevention – and PrEP – into EATG’s core advocacy contribution.

[1] EATG: Position on HIV Prevention (October 2015). Available here: www.eatg.org/papers/new-developments-in-hiv-prevention

Since then, the focus on PrEP has been a key strand of EATG’s work, but initial thinking on treatment as prevention was evident from 2010.

At that time, in 2010, before integrase inhibitors and when lots of regimes were substandard, we had a very forward thinking meeting discussing PrEP and what had been done so far. This was before the IPREX study confirmed PrEP could work. EATG took a lead among HIV organisations in Europe in talking to researchers about the importance of involving the community in prevention trials, and in talking to communities and educating fellow activists about issues particularly important in prevention trials that didn’t apply so much to treatment, such as the involvement of non-diagnosed and non-positive communities. Much like vaccine science

Gus Cairns

The role we are playing in biomedical prevention is increasing – we have this capacity in advocacy. If here is an advocacy action to be planned, people are happy to collaborate with us because we can put it in place – e.g. EATG members were sitting at EMA and played an important role. We tried to launch mobilisation for access to PrEP in Europe, [at a time the] EMA was not clear.”

Giulio Corbelli

To broaden the application of PrEP in the last few years, EATG’s advocacy aimed at two targets: pharma  to support Truvada® as a treatment for PrEP, and the EMA which was, initially, reluctant to accept this as a treatment indication. EATG promoted PrEP heavily in many fora, and as of 2017 PrEP is being rolled out in many more European countries. Though not the only organization involved, EATG’s strong connection at the European governance level is likely to have had significant impact. According to Kevin Fisher, of AVAC, “EATG was instrumental in [forcing] the European Medicines Agency to become proactive on PrEP, which was crucially important.” Studies released in 2017 continue to confirm that, even in lower-middle income countries (LMIC), that despite low levels of awareness of PrEP, MSM in LMIC are willing to use it if they are supported appropriately to deal with a range of individual, social, and structural barriers.[1] Indeed, when EATG became committed to PrEP, according to AVAC, there “was nothing else really in Europe at this time.” With EATG’s promotion, alongside other organisations, PrEP became dominant in the prevention discourse.

 

PrEP is not without controversy. Both inside and outside EATG there was some hesitation about biomedical prevention and the risk that it would influence treatment rollout, increase the risk of toxicity and stigmatization of PrEP users, or lead to a reduction in condom use. But EATG’s position is clear, and for advocates such as Gus Cairns, “biomedicine is an answer and not a cause,” and that the proven benefits of PrEP outweigh potential – and as yet unconfirmed - risks.  

[1] Yi S et al. Journal of the International AIDS Society 2017, 20:21580. Online at: www.jiasociety.org/index.php/jias/article/view/21580 | http://dx.doi.org/10.7448/IAS.20.1.21580

EATG is addressing cutting edge issues. Its work on PrEP is a good example. I hope to see this work go further. I hope to see a strong push for access that will require a strong push for price reduction.  This is essential especially the countries in the eastern part of our region.

Shona Schonning

KEY EXAMPLE OF SIGNIFICANT CHANGES: PrEP

A significant change in which EATG was involved was our work on prevention and driving the discussion on PrEP. We were one of the leading and key organisations in a field that was not primarily our field of advocacy. We worked with AVAC on this and we narrowed down to focus on PrEP. There was this strong request of having PrEP. ECAB were constantly questioning the companies to provide more detail on the patents. We also developed a new position paper on prevention.

Giorgio Barbareschi

"Despite the fact there is a huge delay of PrEP becoming available all over Europe, EATG has done as much as it was possible to achieve. EATG put pressure on pharma (Gilead in particular) to convince them to file for a PrEP indication for Truvada®. EATG also put] pressure on the European Medicines Agency that at the time was reluctant in extending the indication. EATG advocated for raising the importance of PrEP as a prevention strategy, and we are starting to see results. In the last couple of months countries have made PrEP available. We are finally seeing the fruits of advocacy. I am confident that in the next year more EU countries will make it available. EATG contributed significantly, together with other groups.

Andrej Senih

EATG continues to advocate for better access to PrEP. In 2017 EATG and partner organisations applied pressure to Gilead to make Truvada® accessible at ‘generic prices’ across Europe by surrendering its remaining patent rights.[1] Discussions are continuing, but EATG with partners remains committed to ensuring Truvada® for PrEP is available where needed. A related prevention focus for EATG is the European HIV and Hepatitis Testing Week, and as a member of the European HIV/HCV Testing week working group, EATG supports HIV in Europe in its advocacy role.

 

Finally, EATG is an active contributor in the European HIV Vaccine Alliance (EHVA), a EU platform for the discovery and evaluation of novel prophylactic and therapeutic vaccine candidates.[2]

 

[1] Source: Letter from EATG to Gilead, April 11 2017

[2] Source: EATG Office Report June 2016

PERSONAL STORY

I’ve been working in Germany for AIDS Hilfe organisations for more than 25 years. At a certain point, I became very interested in getting more involved with HIV issues at international level. It happened during a training that I facilitated that I met a German EATG member who introduced me to the organisation. The EATG provided me access to international conferences and debates.

 

I’ve seen a lot of changes in the past decades. Meetings of the PWG used to occasionally descend into shouting and abuse. But HIV has become less of a dramatic, desperate disease than it once was. And people eventually realise that you can’t keep screaming year after year.

 

A valuable experience as an active member so far was the co-organisation of a two-day conference on migrants’ access to HIV-treatment. The conference was very successful – I found it remarkable that the organisation was so willing to finance and otherwise support it. Other remarkable experiences relate to sessions and workshops that I organised on behalf of the EATG with partners and colleagues from PICUM (Platform for International Cooperation on Undocumented Migrants) or Doctors of the World. Being a member of the EATG can be a fun and a learning experience, especially when you leave the screen of your computer, or rise up from you couch and get actively involved.

 

I believe the biggest challenge ahead for us will be in staying honest, fresh and alert to Europe’s changing new realities. The right balance is important: Some use the EATG more for personal, some for professional purposes or their career, regarding the membership composure, a right mixture between members living with, or affected by HIV seems me to be another big challenge, which we have to meet.

Peter Wiessner 

KEY EXAMPLE OF SIGNIFICANT CHANGE: European Medicines Agency

Gilead was reluctant to put Truvada® forward for PrEP. It had gone through the FDA in the US but given initial bad vibes from the EMA, who thought the trial data was weak. We had meetings at Melbourne AIDS conference with the company, suggesting they should go to the EMA, as a trial in London had been successful. Other studies confirming benefit included PROUD and IPERGAY studies, so the EMA may change their view. Eventually, in 2016, it was taken to the EMA and as a result it was accepted in Scotland and other countries, including Spain. It was an important procedural step, and EATG pushing the drug company to take it to the EMA was a key part of the process. Without EATG, especially ECAB, the BoD, and the Prevention Coordinator at the European level, this wouldn’t have happened.

Brian West

Hepatitis and TB

As with other EATG target issues, access to treatment for HCV has been in the EATG narrative for a number of years. Patient activism in the HCV space is in some ways less well established than HIV, and for EATG this offers opportunities which, according to Juergen Rockstroh, “to move the HCV agenda on to the table of policy makers and intensify the treatment access discussions in Europe.” Indeed, for Juergen,  “EATG has actively worked with other organisations such as IAS, HIV in Europe, and ELPA, as well as other stakeholders to help in the fight for universal HCV treatment access. Moreover, EATG has played a strong role in providing sufficient education around viral hepatitis to strengthen the role of community involvement.”

For Luis Mendao, who joined EATG in 1999,

 

“There were two things I tried to promote and help EATG be part of. One was developing the new medications for HCV. Many of us were co-infected I was part of setting up the HCV advisory board in 2008 – it was the first board that had European and north American activists. It was a decisive moment because we wanted universal access to treatment, and it was becoming obvious that treatment played a crucial role in controlling the epidemic and the quality and life expectancy of PLHIV. These treatments were a cure and prevented transmission. In 2007, with the Swiss Statement,[1] it became obvious that people with hepatitis were transmitters, so there was a need to scale up treatment.”

Luis Mendao

 

[1] Available here: http://i-base.info/qa/wp-content/uploads/2008/02/Swiss-Commission-statement_May-2008_translation-EN.pdf

Since 2012, however, HCV has morphed into a condition that can be easy to treat and test for. This changed the dynamic and the paradigm significantly, and EATG has driven integration of HCV with HIV and TB at the European level - partly via the Civil Society Forum - to ensure they are still  addressed in a political context edging towards broad health agendas and away from a focus on specific diseases.

The Sitges meetings

“I think the contribution of EATG has been extremely instrumental in the developing of treatment for HCV. Part of this was contribution not only in the last 5 years."

Andrej Senih

The so-called Sitges Conference – from 2017 the X Multi-stakeholder Meeting – is now in its 10th year and is a particularly powerful forum for discussing approaches to the care and support of people co-infected with HIV and viral hepatitis. Initially held in Sitges, southern Spain, the conference brings together researchers, activists, affected people, and health care workers. The broad purpose of Sitges was to advance HCV drug development and access to treatment through clinical trials that are well-designed, ethical, clinically relevant and inclusive of people who are HIV/HCV co-infected, current and former drug users, people living with other medical or psychiatric conditions, transplant candidates and recipients, people living with advanced liver disease, and members of other marginalized and underrepresented communities.[1] The event is held over three days, during which community members meet to discuss current hepatitis information and agree priorities, a meeting of stakeholders (including clinicians, regulators, and pharmaceutical representatives), and closing with an agreed consensus – the Sitges Statement - by community members and deciding on next steps.

 

EATG continues to organise these symposia every year, representing a major area of focus for EATG. As a result of early Sitges meetings, the 2009 GA provided the PWG and ECAB with a mandate to create a joint Hepatitis C Taskforce to develop and implement a plan for improving access to hepatitis C services, particularly for people co-infected with HIV, and targeting stigmatised groups and the countries of eastern Europe and central Asia.

 

Sitges remains a significant meeting of its kind – for example, before Sitges I, new HCV drugs were not tested on co-infected people. In addition, representatives from the HIV and HCV communities work together towards common goals for people living with hepatitis C, and HIV/HCV co-infection, and the meetings offer an opportunity to share the latest data and forge community consensus among multiple stakeholders. Another outcome from the meeting came after Sitges III, when HCAB was formed. This network is a group of international activists from the HCV and HIV/HCV community to provide a mechanism for activists to work with companies on their HCV drug development programmes, review protocols, and participate in investigator meetings. In some countries, HCAB provides early access to experimental HCV drugs.

 

The most recent event in 2016, held in Tbilisi, Georgia, reflects the benefits of this important event.[2] Focusing on access to direct-acting antivirals (DAAs) for hepatitis C (HCV) in eastern Europe and central Asia (EECA) – due to the scale of the epidemic and limited access to highly effective therapy in that region – the event included contributions from major pharmaceutical companies, the WHO, Medicines Patent Pool, the National Centre for Disease Control and Public Health of Georgia, and participants from a range of national-level civil society organisations. As with all previous events, the meeting produced recommendations for stakeholders and is an excellent example of EATG’s leadership, working in partnership with local and European-wide organisations on an inclusive and targeted intervention addressing a current core need in the HIV sector.

For Luis Mendao,

“There has indeed been an uptake for generic treatment for HCV, much quicker than for HIV. EATG played a key role in this, contributing to the national and international debates and raising the issue as a community priority in core forums encouraging, for example, pharma company ViiV to enable better access for both extremely poor countries, and big countries that aren’t rich.”

Luis Mendao

Another mechanism illustrating EATG’s commitment to treatment access, and the value of a member forum, occurred in 2017. Here, following the release of a Cochrane review suggesting that direct action agents for the treatment of hepatitis treatments were not clinically effective and do not provide an economically viable treatment option.[3] Over a period of days EATG’s membership list provided a community response to the review, highlighting the weaknesses in the review, with a core message: Pan-European and global networks of communities of people living with and affected by hepatitis C (HCV) and HIV point out that current direct acting agent (DAA) treatment options against hepatitis C infection, which provide a final cure to 95-97% of patients carrying HCV, are effective and useful from an epidemiological and public health perspective.[4]

 

Regarding TB, EATG has a coordinator – similar to hepatitis – who works to engage with stakeholders working in the TB sector. EATG also contributes to TB Online, 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 continues 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.[5]

 

[1] Source: Presentation, ‘The History of Sitges’, Tracy Swan, 2015

[2] See meeting report: Tbilisi/Sitges IX Meeting: Policy Meeting On Access To Direct-Acting Antivirals In eastern Europe And central Asia [December 2016]

[3] For original Cochrane review: Jakobsen JC, Nielsen EE, Feinberg J, et al. Direct-acting antivirals for chronic hepatitis C. Cochrane Database of Systematic Reviews 2017, Issue 6. Art. No.: CD012143. DOI: 10.1002/14651858.CD012143.pub2.

[4] Full text of EATG response: www.eatg.org/news/eatg-is-concerned-by-the-cochrane-review-of-daa-treatment-against-hcv-infection

[5] Source: EATG Office report June 2016

European policy impact: the EU Civil Society Forum

Civil Society Forum

Setting up and operating the CSF is a tremendous achievement and set an example for other civil society forums, and interactions between government and civil soceity – it's a workable model.

Tamás Bereczky

In general, the work that EATG is doing in terms of giving KP and people living with HIV a voice at the European level is tremendous. This is something that can’t be understated. There are not that many organisations that do this.

 

Michael Krone, AAE

The EU Civil Society Forum on HIV, TB and viral hepatitis (CSF) is a civil society expert’s forum, with members selected by the EC following a call for applications. It aims to facilitate the participation of NGOs and networks, including those representing people living with HIV/AIDS, viral hepatitis and tuberculosis, in European policy development and implementation, and exchange information and knowledge. It also serves as a civil society consultation partner for the EU HIV/AIDS Think Tank (an expert group comprising representatives of national health authorities in EU Member States and selected neighbouring countries). As co-chairs on the CSF, EATG together with AAE, alongside the other organisations, have had a direct conduit to the European regional policy agenda. EATG was re-elected to be part of the CSF’s coordination team in 2017.

The CSF was established in response to the Dublin declaration from 2004 that required the governments of Europe to monitor the implementation of the commitments, uptake and scale up of HIV services. Being engaged with such an important body such as the Civil Society Forum of the European Commission on HIV/AIDS, Viral Hepatitis and Tuberculosis, is key, and, for one member, “Sometimes the community is more knowledgeable than the actual people from governments.” The CSF is an informal body, and the Think Tank (see box) a formal body, into which the CSF has input into the agenda. The Think Tank is where for joint HIV, TB, and hepatitis communication plans are advocated. Other organisations are also represented, including those involved with children, IDU, vulnerable groups (e.g. ECU) and other communities. As members – and co-chairs – of the CSF, EATG has a direct link between its members, and bodies into policy level initiatives in the Member States of the Europe. As EATG was a network of treatment advocates with theoretical reach across Europe – with the AAE in a similar position as a network of civil society service providers – EATG and AAE were established as co-chairs of the CSF. The CSF forms an advisory board to the European Commission on the implementation of monitoring, communications, and action plans for HIV. The CSF also provides a vital opportunity for raising issues that may seem self-evident to members of the community, but perhaps not so much to politicians, researchers, and epidemiologists working at the somewhat abstract level of European policy: for the AAE’s Michael Krone, “This is what EATG are good at.”

 

For Luis Mendao, who chaired on behalf of EATG, “It’s an important meeting, because we have EU, ECDC, WHO, European Agency for Drugs, and UNAIDS, all involved. All the important agencies and representatives from civil society from other countries are there, and there are networks on HIV and key populations, including sex workers and injecting drug users. The CSF provides a space with all players for setting the agenda. We also have members of neighbouring countries under the umbrella of a special partnership with Russia and other non-EU countries. It’s an important forum for changing practices, sharing information, knowledge on policies and shaping ideas that can be promoted to the EU and at national levels.”

 

A key part of the CSF’s work has been contributing to developing a new EU policy framework and strategy for HIV. When the previous strategy came to an end in 2014 there was a push from civil society to ensure the focus on HIV continued. The CSF (and EATG) was well-placed to take a leading role, and the CSF continues to provide  a vital forum for civil society input, through what is sometimes called a ‘European democratic way’. It speaks truth to power. And the CSF is still evolving, in part to meet the threat of HIV falling down on the policy agenda and to expand the policy framework beyond HIV. As co-chair EATG has been leading civil society’s demand for the integration of HIV, TB, viral hepatitis, and STIs - an amalgamation that  has largely been achieved..

Personal and professional impact

EATG is an organisation that, by definition, spans the European region, encompassing over 50 countries, multiple manifestations of the HIV epidemic, and a range of political and cultural contexts. There are common interests, however. EATG is in a position to develop collaborations and knowledge sharing, and for one member, “It is great to meet others involved in issues of screening, care, and treatment in Europe. Often the issues we face are similar and there are different strategies used that can be shared.”

At the personal level

Developing the tools for activism is rooted in the DNA of EATG, and this component provides an important model for local activists to follow. EATG can provide “energy and empowerment” in HIV activism, especially for those working in countries where tolerance of PLHIV and key populations is lacking. For one member:

I remember the first time I entered the ECAB meeting room about 12 years ago, and the overpowering feeling that my peers there were doing meaningful work with pride and integrity, while HIV has always been painfully stigmatising in my country. I am also proud and happy that EATG has allowed me and made possible for me to become a full-time patient advocate. While it has been extremely trying, it is also very rewarding. I try to remain humble about this, and try to give back to EATG as much as I can, with knowledge, integrity, and work.

Tamás Bereczky

For another member, working in Romania, EATG provided opportunities to attend ECAB meetings and other events, and resources (unavailable within the country) for translation into the local language through the COPE project, for dissemination to health care workers, on treatment, nutrition, MTCT, and opportunistic infections. At the personal level, for one member:

Being a member of EATG has changed me in every possible way. EATG has become a place I can meet like-minded people where we focus on our commonalities and work together (more or less) to achieve a greater cause. It has made me realize that people all over the world are pretty much asking for the same things: safety, love, and compassion even if they use different ways to achieve those. For me, the most challenging part has been learning to use a political language (I am still far from it) and set political goals, which can take years and years to achieve. So I am learning the art of patience.

Christina Antoniadi

At the national or organisation level

EATG’s activities are predicated on empowering advocacy and increasing access to treatment and care for PLHIV, and it’s salutary to explore the extent to which organisations and individuals have benefited from EATG.

 

For example, in Italy member discussions around PrEP and community testing, and in Romania (highlighting issues at policy levels around stock outs and addressing HIV in young people) suggest that EATG is able to provide support at the local level. Indeed, for countries with weakened health systems, or gaps in effective legislative and policy frameworks, EATG offers access to information and resources that can speed up the development of much-needed support networks for PLHIV.

 

Bringing people into the Ageing Conferences, or the Sitges hepatitis meetings, facilitates a rapid form of capacity building. For one member, “It was great to receive capacity building, learning, and then be able to inform those living with [hepatitis] in my country.” And for Romania, “[participants at the ageing conference had the] opportunity to better know each other, to discuss with doctors who gave presentations at the conference [and] inform them about the challenges and needs; to improve the doctor-patient relationship.” In Tajikistan, one member stated that, “My director [attended] the STEP-UP Academy and is now a full member of the EATG. I studied at STEP-UP of the academy and received a grant, according to which I transferred the School for MSM to PLHIV.”

In Macedonia, one local organisation has used the EATG internal model as a template – “We learnt a lot on how to structure our organisation to ensure it is about the community. For example, around the governance structure, the importance of having an assembly of members who have a delegation of authority, an office, a board, and internal policies and procedures to avoid conflicts of interests and be aware of them and talk openly about them. These things should always come from the membership.”

Andrej Senih

Another component of prevention, the use of microbicides, was another area highlighted by EATG. Support for microbicides was important, according to AVAC, who co-sponsored two prevention meetings with EATG, “at the second prevention meeting the microbicide community was engaging because EATG had been supportive.” This also applies to the promotion of PrEP, which, again according to AVAC talking about the same meeting, “the issue of the PROUD study and a lot of interest in PrEP [was evident]. EATG became a focal point for conversations about PrEP in Europe.”

Kevin Fisher, AVAC

4. Where are we going? Unique organisation, unique future challenges

“The future is inherently plural.” (William Gibson)

In the next five years EATG is likely to continue to diversify its membership and geographical reach, and strengthen its advocacy work through project-focused initiatives that provide income for the organization, drawing on broad based membership expertise. Many of the challenges EATG is facing are not new and for many current members it’s also important to maintain elements of old-style activism, the bedrock of advocacy. What are the challenges – and opportunities – facing EATG now?

Juergen Rockstroh

Changes in the political landscape, with stronger right wing or fundamentalist representation, usually come with increased risk for stigmatisation and criminalisation of vulnerable groups that urgently need help to keep their rights protected.

Henning Mikkelsen

We really need EATG in Europe. It remains the only HIV activist network in Europe. But I also think it shouldn’t forget its activist roots. All HIV advocates need the engagement with LGTI across Europe. This is what happened successfully in France when they got PrEP on the agenda – it was through the LGBTI community in France. A challenge for EATG will be how to keep focus on the big, broad mission of tacking HIV, TB and HCV across Europe, whilst at the same time maintaining a concrete and specific focus on the epidemic in MSM and a perspective on countries where there is no political leadership or community awareness.

Mariana Vicente

We need to find our space in this new world where most people in Western Europe have access to treatment and to focus on the unmet needs of PLHIV in the regions with lower access to treatment and prevention programmes, of key affected population and on quality of life aspects.

EATG is doing a great job! Just continue your mission. It is not over yet. There is always room for improvement. We could do more: to introduce PrEP faster in EU and also other tools to stop the spread of HIV among MSM in Europe; keep advocating for the best treatment options; for finding the cure for HIV, HBV, and challenging health inequalities. [Respondent, Membership Survey 2017]

Moving to the horizontal

In some ways, a purely vertical approach to working groups has outgrown itself, becoming a more coordinated approach which ensures sharing of science, policy, and training to EATG’s work. As a result of this critique, a more ‘project led’ approach to EATG’s work is likely, in the future, to mean there is a more transversal approach. Here, contributions will be made from all working groups – demonstrated recently by PrEP, which was driven by input all the working groups.

 

This horizontal approach is likely to become more dominant as funding is acquired from projects, rather than only the pharmaceutical industry. With ECAB, there is also an imminent opportunity to shift the focus to include not just scientific debates with pharma – which were vital for treatment-related discussions – but to include related issues, such as access in treatment-starved areas of Europe, and – as has been done – consideration of research protocols. It could conceivably become a ‘task force’ to focus on particular medicine-related questions, for example the likely increase of generics in the future.

Diversification

EATG is already diversifying, in membership, geographical reach, and topic focus. For some, this may feel like a move away from a feeling of ‘family’ that was strong in EATG’s early days – a necessity at the time. Early members remain strongly connected, perhaps more recent members less so. With the changes of HIV away from its ‘emergency’ status and a more nuanced approach to medication provision across the region, this has impacted inevitably on the nature of EATG internally and externally. Geographically, broadening attention eastwards is strategic, and interventions are likely to address problems faced in the West a decade ago: access, testing, and health system gaps. The focus should always be on what is actually needed; listening to the members in the region. As EATG engages with other, related diseases, such as TB and HCV, it’s also important not to forget the core key populations affected by HIV. Human rights for LGBTI, the enhanced risk of HIV in certain groups and particular countries will remain a vital area for advocacy where EATG can play a key role.

“EATG has an important role to play to help keep the HIV crisis in Eastern Europe and Central Asia on the European and global agendas. Communities in those countries are pushing their governments to fund prevention and treatment.  Until they are successful, we must continue to push donors to keep money flowing to the region and push the pharmaceutical industry to stop taking so much money out of it. The 2018 International AIDS Conference in Amsterdam will be a great opportunity for EATG. It’s a rare situation in which a lot of people from the west and east will be together. EATG can help bring people together around priorities. I hope we will also unite with other regions like Asia and South America where the middle-income countries are suffering a similar crisis to boldly call for a more humane response. I would like to see EATG be bolder in its call for access alongside call for price reduction. We should not compromise when it comes to pharmaceutical industry profits. People are still dying in our middle income countries and industry profits are partially to blame.”

Shona Schonning

EATG is in indeed in a strong position to push for better treatment access into the east and central Asia and can be a significant player. If not, countries such as Russia are likely to continue to have expanded epidemics. EATG can support from a grassroots level, with the overall aim of reaching regional targets, such as 90-90-90[1]. These should not be simply aspirational.

[1] 90-90-90 http://www.unaids.org/en/resources/documents/2017/90-90-90

We could aim to be the first continent to achieve no new transmissions. But that will take will and a big push from everyone, not just a few. The future must be about the care people receive, and the laws around HIV – what will they look like? With cure research, what about when someone goes through a programme, but after 2 years has a rebound, where do they stand in the law if they transmit? There is also stigma, and if someone always has to say, “I was HIV positive,” the stigma will never go away. We need to get lawmakers to look at what this means. Will people be given protection? Will I have to disclose?

Damian Kelly

Representation and focus

As a patient-led organisation, one of EATG’s key strengths has been to connect PLHIV – patients – directly to policy-making bodies at the European level. It’s vital that as EATG diversifies that this is not lost – representatives of patients should never replace patients themselves.

I was in meetings where they say they are patient organisations, and recruited liaison officers who are responsible for keeping in touch with real patients. This is perverse. I don’t want this happening with EATG – we will lose something essential which is to be in touch with the constituency.

Tamás Bereczky

Expanding the knowledge and skills based of the entire membership. EATG members currently consist of those who are highly experienced, some new to the HIV sector, and others affected directly by the virus but not working in the field. EATG can seek ways to ensure all members are empowered to a high level and able to influence their specific contexts, which requires deep and strategic work by EATG to target support and capacity building. For example, those in the West will have distinct needs and challenges from those in the East, where any access to treatment can be challenging. What do members in different countries require? EATG can’t risk parachuting specialists in to provide training (for example) that isn’t needed, or has the wrong priorities. EATG cannot be ‘colonial’.

 

Groundhog day is a recurring phenomenon, and for many in the HIV sector, especially those involved and affected from the early days, we see progress on important issues - such as HIV stigma, or awareness of HIV risk - threatened by marked regression on a seemingly cyclical basis. For the AAE’s Michael Krone, this is s significant challenge facing EATG: “We all work against discrimination, stigma, and criminalisation of specific key populations in different countries. This remains on agenda because the political climate is not getting better. I’m an old man and I feel sometimes that things that I thought were understood 30 years ago have to be explained again and again.”

 

HIV is complex, diverse, and an ever-changing context. Treatment availability – the core mission of EATG’s launch in 1992 – has now morphed into much broader issues such as access and affordability of treatment, universal health coverage, and the place of HIV in a wider spectrum of public health needs (as defined in the Sustainable Development Goals).

“good reasons for still looking at HIV through the lens of exceptionalism – for example social justice. However, it may be important for EATG to look also at broader health reform and ‘speak the language’ of universal health coverage. Energies to provide access – for example – in very low HIV prevalence areas will require different levels of intervention than areas with higher prevalence.”

Raminta Stuikyte

Institutional memory and activism

Loss of institutional memory is coupled with the move away from ‘AIDS exceptionalism’. Generally, EATG will always face the challenge of declining interest in HIV as a discrete policy focus, and whilst it is progressive to broaden the focus from HIV onto related diseases – reflected in the recent SDGs replacing MDGs, and promoting ‘universal coverage’ for care and support – the heritage from HIV and AIDS is valuable. Lessons learned by the community, advocates, and PLHIV themselves drove much of the key developments in the sector (more so, initially, than national and regional policies). Is there a need for succession planning? Educating nascent activists about the early days of HIV activism? EATG has much to offer, as it is with the current EUROPACH project.[1]

 

[1] Information here: www.eatg.org/project/europach-disentangling-european-hivaids-politics-activism-citizenship-and-health/

We need to dig deep into the wealth of experience. We have had amazing and interesting lives – that’s what keeps me here. We’ve survived a plague! We need to keep in touch with more people living with HIV in Europe, rather than just distant entity skating on the thin ice of EU policies. Some continued core old school activism – getting our hands dirty – some of our members pack bags full of medicine and take to the warzone in Ukraine. My doctor would get medicines from patients who died and so we could pass them to people who needed them. I once procured medicine for hepatitis from India for 30 patients. We need old style activism – this is essential.

Tamás Bereczky

Harm reduction

Another key population EATG provides support (rather than leads) is in the context of harm reduction for drug users. EATG is in a strong position to mobilise civil society to be more coordinated in its effort to pay for harm reduction – and would certainly be consistent with the expansion eastwards. EATG currently contributes to statements (with EHRN for example), and provides input in the European context (CSF on drugs; parliamentarian work, work related to presidencies of countries for Europe). But is there more to do?

I understand a priority focus is treatment, and testing – we certainly need to fight for treatment. But this is a medicalisation of the HIV response, and is a challenge. The temptation is to go for ART schemas and promoting PrEP, instead of prevention that addresses the needs of specific communities. That’s the most challenging, and I hope EATG will mobilise national forces for advocacy to address shortcomings in harm reduction.

Anna Dovbakh, ERHN

Linkage and collaboration

Strategic approaches to coordinating with other organisations, especially eastern Europe and central Asia, which is increasing the focus of HIV and the source of many recent members. This is especially where Global Fund support is transitioning to national level – EATG have little to do with the Global Fund currently, but liaising with organisations that would expand EATG’s reach and perhaps allow targeted support during the transition period.

EATG, with its rich institutional memory and empowered membership is in a powerful position to work with other patient groups to share information around advocacy skills and policy influence. This could be through EUPATI or similar networks where HIV is one of a number of diseases.

Pricing

EATG has been a large part of the pressure on pharma on pricing, and especially treatment for HCV, and Truvada® for PrEP. This got the attention of drug companies, and EATG can provide detailed arguments for the EU and EMA so they can also lead on pharma. Some of EATG’s work is direct contact with EU through CSF, and some influence generally through open letters. In some settings, “EATG is able to push above its weight, especially around [pricing] policy,” according to Gus Cairns.

Pricing issues in the east are especially acute, and the search for a generic alternative has been more prominent here than other parts of Europe, and anywhere a health system is required to provide universal access, the price can have a significant impact on access. According to a respondent from a membership survey in 2017: “I was involved with building the knowledge of EE and CA access to treatment, using global materials, and adapting to Russian language. So EE gained better understanding on pricing, [but] we activists were [historically] the last to understand this is an issue. Not sure if is this is through better understanding of patent protection, but pricing is something that people feel similar to HIV and TB treatment drugs. [Advocates] started understanding overall how pricing affects health budgets.” The implication of this is, if pricing is reduced for HIV medication the provision of other treatments becomes easier. There is certainly a growing cohort of people needing treatment, and therefore health systems need to consider the burden and the capacity to pay. EATG can shape its advocacy to promote a better quality of treatment.

Funding and increasing the focus on project work

As EATG seeks to address the need for funding to support a growing budget, the increasing shift to transversal project work, which spans all EATG’s membership groups is necessary, and requires transparency around project applications, and the need for horizontal sharing and working.

PULLOUT: Doing more with less, or creating enough success that funding follows. I’d like to see a clearer statement of WHO European needs, whether or not we have immediate plans for them: adequate prevention plans, safe testing for all, PrEP across Europe. HCV drugs access for all, TB treatment for all. [Also] demands for local organisation, for women, for sexual health and for social well being, local safe places for people to develop their knowledge and empowerment, sex workers, people who use drugs. [We could] respond to the greatest need.

Ben Collins

Doing more with less, or creating enough success that funding follows. I’d like to see a clearer statement of WHO European needs, whether or not we have immediate plans for them: adequate prevention plans, safe testing for all, PrEP across Europe. HCV drugs access for all, TB treatment for all. [Also] demands for local organisation, for women, for sexual health and for social well being, local safe places for people to develop their knowledge and empowerment, sex workers, people who use drugs. [We could] respond to the greatest need.

Ben Collins

Allocation of project work – which requires contribution from multiple working groups and members – will place new demands on EATG, especially in the selection or particular topic areas. EATG has significant expertise; and how best to capitalise on this in ways that address the strategy will be a key task for the management team in the coming years. One area that will be robust is prevention in which EATG will continue being involved. But it will need to include thinking how to do prevention, as it involves people who are not currently infected. In one sense, it challenges the HIV activism model to make conscious effort to make alliances with LGBT organisations that haven’t previously being involved with health.

“There is still a lot of prevention work that needs to be done. Getting PrEP for Europe could take years. Hope they continue that work. I know funding is a struggle (mainly pharma), and pharma is fickle with their requirements. Pharma won’t fund harm reduction work as much, and I hope funders like EJAF could articulate a way to help EATG be seen as more than treatment advocates ONLY.” [Kevin Fisher, AVAC]

The intended outcomes will of course be a more strategic, and ultimately independence from pharma for funding, which as patents expire and generic medication is available in higher quantities, will inevitably impact on drug company money. Developing relationships with other donors, and, as patents begin to expire, generic drug companies is a key challenge for EATG in the coming years. EATG can strategise on how this will be achieved, as pharma funding is balanced with other sources. EATG indeed is recognised as a strong advocate, and needs to be mindful of other strong advocates (e.g. UNAIDS) and make sure partnerships include sharing both ways. Groups in which EATG sits, for example AAE, UNAIDS, CSF, and EUPATI, will become increasingly vital partners in the future.

“It’s vital to ensure EATG doesn’t just go where the donor or pharma money is... if funding is available for work in a particular country it may not reflect a particular role for EATG just because money is available. In every country there are always people who need something; sex workers, people who use drugs and undocumented migrants, for example.”

Sini Pasanen

Funding and increasing the focus on project work

Finally, there is a need for effective M&E, such as tracking actual achievements (outcomes), rather than simply noting activities. EATG is heavily involved at the policy level, and also undertakes a great deal of training (especially of late) that is likely to be of significant benefit to individuals. But what is the strategic impact?

"We have a clearer sense of the importance of policy matters on the European level, but our approach is still fragmented. We are more visible in key HIV forums, have improved our training activities, but it is not so clear about long term strategic outcomes, as opposed to immediate and personal value. A key problem is that it is not clear how we see 'achievements'. Are they just things we have done or activities completed, or is it more real outcomes in ensuring the wellbeing of PLHIV and delivering on our Strategy. I think we should try to do a better job in tracking, measuring and presenting achievements - as steps leading to improved wellbeing for people with HIV. Otherwise, our achievements might seem sparse compared to our expenditure of money and resources."

Andrej Senih

5. Final word

By its nature, EATG is a ‘European’ phenomenon working to prioritise cooperation, share information, and work across the whole European region; and it can bring issues on the ground up to the regional level. For the AAE’s Michael Krone, “When you talk to a Checkpoint in Latvia that is being closed, for example, the EU can make a difference, and organisations like EATG and the AAE are involved from a civil society perspective. We still work on the ground and know what’s going on. If we don’t bring topics up at the EU level, people would never know about them.”

 

EATG is also evolving. This is by necessity in response to external changes, and internally because an expanding and more diverse membership. Can EATG evolve sufficiently? The HIV world is changing rapidly, and issues are not the same for some countries. What is our space in the ‘new’ world where treatment is available but not all PLHIV have access. How can EATG deal with a global health context where HIV is not as prominently on the agenda as 10, or even five years ago? Quality of life issues for PLHIV – now that available treatment is proving successful – are becoming increasingly vital to address. These are the hopes and dreams of EATG.

We need to educate ourselves to keep our eyes on what we have achieved. And we need to educate newcomers who may get too focused on one element, or on the camaraderie of membership. We’re not a club; we’re an organisation to make change and measure that change to ensure we’re being effective. In EATG one can get lost in the forest and not see the trees. [Ben Collins]

We need to educate ourselves to keep our eyes on what we have achieved. And we need to educate newcomers who may get too focused on one element, or on the camaraderie of membership. We’re not a club; we’re an organisation to make change and measure that change to ensure we’re being effective. In EATG one can get lost in the forest and not see the trees. [Ben Collins]

In Memoriam

EATG was founded to improve the lives of people living with HIV, and it is they who are the organisation’s bedrock. We have lost many friends since 1992, friends whose passion and commitment have empowered and inspired us. It is to their memory that we dedicate EATG’s continuing work.

Andreas Salmen

d:1992

Marc Regnard

d:1992

Michael Fischer

d:1992

Jan B. Haan

d:1993

Cord Ebeling

d:1993

Olov Wendelborg

1963–1994

Nathalie Dagron

1960–1995

Marina Bichetti

d:1997

Jørgen Haahr Kristensen

d:1997

Jürgen Poppinger

d:1997

Julio Silveira

d:1997

Jeannine van Woerkom

1954-1997

Svetlana Denk

d:2001

Pedro Jorge Eduardo da Silva Santos

1962–2002

Maurizio Pancanti

d:2003

Arjen Broekhuizen

1955–2004

Eric J. Welling

1956–2004

Albert Rúnar Aðalsteinsson

1950–2006

François Wasserfallen

1962–2008

Gideon Hirsch

1960–2008

Roy Arad

1978–2010

Jerzy Jurek Domaradzki

1949–2011

Kees Rümke

1958–2014

Bob Munk

1953–2015

Paul Blanchard

1964–2016

Glossary