European AIDS Treatment Group

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Registration as it was on 11 May 2020
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Overview

Lobbying Costs

37,500€

Financial year: Jan 2019 - Dec 2019

Lobbyists (Full time equivalent)

1 Fte (4)

Lobbyists with EP accreditation

4

High-level Commission meetings

2

Lobbying Costs over the years

  • Info

    European AIDS Treatment Group   (EATG)

    EU Transparency Register

    49959188061-85 First registered on 13 Feb 2012

    Goals / Remit

    Founded in 1992, the European AIDS Treatment Group (EATG) is a European network of nationally based volunteer activists comprising of more than 170 members from 47 countries in Europe and beyond.
    Access to the best available treatments is a major goal for the EATG. This includes:
    -Access to all people who could benefit from the treatment, including so-called 'sub-populations' like drug-users, women, children, migrants, people with hepatitis or tuberculosis co-infection, with haemophilia and other.
    -Access for patients in all stages of HIV infection (including first-line, salvage)
    -Access to treatment in all European countries (according to WHO definition of European region)
    Our primary geographic focus is member states served by the World Health Organisation (WHO) Regional Office for Europe. However, European AIDS Treatment group considers all potential opportunities for collaboration and support of similar efforts in other parts of the world.
    Our members are representatives of different communities affected by HIV/AIDS in Europe. It represents and defends the treatment-related interests of people living with HIV/AIDS and related co-infections such as Hepatitis C and Tuberculosis. Our activities focus on treatment literacy and treatment advocacy.
    The high-level outcomes we aim to achieve by 2025 are:
    1.Healthy communities of people living with and affected by HIV, with enhanced quality of life and access to effective, integrated health and support systems.
    2.Empowered affected communities working in collaboration, with access to the HIV, viral hepatitis, TB and STI prevention tools they need
    3.Communities of people living with and affected by HIV engaged with all prospective and observational research processes in up-to-date diagnostics, medicines, medical devices and care relative to HIV, viral hepatitis, TB and STIs
    By the end of 2022- our goals are:
    -New and integrated models of care are identified, designed, developed, and promoted with community involvement
    -Community influences the implementation of digital solutions at local, national and regional level
    -Rights violations in specific countries or sub-regions are monitored and reported
    -Good practices on Health Technology Assessment (HTA) are identified and promoted
    -Community members are equipped to influence pricing negotiations/engage on medicines shortages
    -Community is engaged with industry in the design, development and implementation of research/programmes for new therapeutic solutions
    -Community needs, priorities and strategies are defined for hepatitis B, TB, and STI co-infection with HIV with key stakeholders
    -Community members have increased scientific knowledge on HIV and relevant co-infections
    -Community provides input into clinical research for innovative treatment options and other research/ programmes
    -Community understands and is engaged in cure and vaccine research
    -Priorities on the HIV pipeline are defined with the participation of the community
    -HIV-specific PROMs are developed in collaboration with community
    -Increased attention for clinical trials in the EECA region
    -HIV Community is actively engaged in improving and promoting Patient Engagement in several disease areas
    -Increased community involvement in the development and promotion of innovative, sensitive, user friendly diagnostics tools
    -Community is involved in the development and implementation of innovative PREP delivery models
    -Increased community capacity to respond to the needs of inadequately served populations (PUD, migrants, sex workers) by identifying and promoting evidence-based interventions
    -Community concerns on the enabling legal environment, investment and implementation of combination prevention are reflected in EU, WHO, UN policies, programmes, actions
    -Community is involved in the monitoring and reporting of treatment shortages as part of the Treatment as Prevention, PrEP and harm reduction agenda.

    Main EU files targeted

    The EU HIV/AIDS Civil Society Forum has been established by the European Commission as an informal working group to facilitate the participation of non-governmental organizations, including those representing people living with HIV/AIDS in policy development and implementation and in information-exchange activities. The CSF includes about 40 organizations from all over Europe. AIDS Action Europe (AAE) and EATG co-chair and provide support to the work of the EU HIV/AIDS Civil Society Forum, an informal advisory body to the European Commission.

    The European Testing Week is an initiative that was launched by HIV in Europe in 2013 to help more people to become aware of their HIV status.
    Initiative aims: The ultimate goal of European HIV-Hepatitis Testing Week is to make more people aware of their HIV and/ or hepatitis status and reduce late diagnosis by communicating the benefits of testing with the aim of supporting ongoing dialogue between all partners in the HIV, and hepatitis communities.

    Address

    Head Office
    Mettmanner Strasse, 24-26
    Duesseldorf 40233
    GERMANY
    EU Office
    Interoffices
    Avenue des Arts 56-4c
    Brussels 1000
    BELGIUM
  • People

    Total lobbyists declared

    4

    Employment timeLobbyists
    25%4

    Lobbyists (Full time equivalent)

    1

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    4 accreditations were / are live (in bold) for the selected state of 11 May 2020

    Name Start date End Date
    Chiara LONGHI 14 Mar 2024 13 Mar 2025
    Ann Isabelle von Lingen 23 Mar 2024 02 Oct 2024
    Ms Ann Isabelle von Lingen 23 Mar 2024 15 Apr 2024
    Ms Chiara LONGHI 14 Mar 2024 15 Apr 2024
    Mr Pieter VANHOLDER 15 May 2020 01 Jun 2021
    Ms Ann Isabelle von Lingen 13 May 2020 13 May 2021
    Mr Pierre VARASI 20 Feb 2020 20 Feb 2021
    Ms Marina COGNEE 20 Feb 2020 20 Feb 2021
    Mr Bojan CIGAN 20 Feb 2020 20 Feb 2021
    Giorgio BARBARESCHI 20 Feb 2020 20 Feb 2021
    Mr Pieter VANHOLDER 18 Apr 2019 01 May 2020
    Ms Ann Isabelle von Lingen 04 Apr 2019 04 Apr 2020
    Ms Fiona GREENHALGH 04 Apr 2019 12 Feb 2020
    Ms Ann Isabelle von Lingen 21 Feb 2017 17 Feb 2018

    Complementary Information

    We are a voluntary organisation with over 170 members from over 45 countries within and outside Europe.
    Our full-time Programme Manager works approx. 1/3 of her time on transparency register activities. Work on EC projects by EATG staff are not included in this calculation.
    The volunteer work of EATG members makes up the extra time spent.

    Person in charge of EU relations

    Data not provided by Register Secretariat due to GDPR

    Person with legal responsibility

    Data not provided by Register Secretariat due to GDPR

  • Categories

    Category

    III - Non-governmental organisations

    Subcategory

    Non-governmental organisations, platforms and networks and similar

  • Networking

    Affiliation

    EU Institutions and Executive Agencies
    DG Sanco – Health and Consumer Protection; DG Enterprise and Industry; DG Research; DG Trade; European Parliament; European Medicines Agency (EMA); European Monitoring Centre for Drugs and Drug Addiction (EMCDDA); European Centre for Disease Control (ECDC)

    Other EU Platforms
    EU Health Policy Forum; HIV/AIDS Civil Society Forum (CSF); Pharmaceutical Forum
    United Nations programs and organisations
    UNAIDS, the Joint United Nations Programme on HIV/AIDS; World Health Organisation (WHO), the directing and coordinating authority for health within the United Nations
    International Organisations
    International Organisation for Migration (IOM); International Harm Reduction Association (IHRA); International AIDS Society (IAS); International Planned Parenthood Federation (IPPF)

    HIV/AIDS Organisations and Networks
    AIDS Action Europe; AIDS Treatment Activists Coalition (ATAC); International Treatment Preparedness Coalition (ITPC); Global Network of People Living with HIV/AIDS (GNP+); International Community of Women Living with HIV/AIDS (ICW); Eastern European & Central Asian Union of PLWH Organisations (ECUO); Global Campaign for Microbicides (GCM); International AIDS Vaccine Initiative (IAVI); AIDS Vaccine Advocacy Coalition (AVAC); HIV in Europe; NAM; Terrence Higgins Trust (THT)

    Public Health Networks
    European Public Health Alliance (EPHA); Concord; EU Civil Society Contact Group; International Harm Reduction Development Program (IHRD); Eurasian Harm Reduction Network (EHRN); Health Action international (HAI); Médecins Sans Frontières (MSF), European Forum for Good Clinical Practice (EFGCP)

    EATG involvement via projects
    AIDS and Mobility Europe; AIDS Action Integration; European HIV Resistance Network; HIV/STI Prevention & Health Promotion among Migrant Sex Workers (TAMPEP); Health GAP (Global Access Project);

    Other European organisations
    European Patients’ Forum (EPF); International Alliance of Patient Organisations (IAPO); European Forum for Good Clinical Practice (EFGCP); European Federation of Pharmaceutical Industries and Associations (EFPIA); European Coalition of Positive People (ECPP); European AIDS Clinical Society (EACS); European Platform for Patients Organisations, Science and Industry (EPPOSI)

    Other organisations and networks
    Platform for International Cooperation on Undocumented Migrants (PICUM); Open Society Institute (OSI); Human Rights Watch (HRW); Correlation European Network Social Inclusion and Health; The Global Fund to fight AIDS, Tuberculosis and Malaria (GFTAM); Global Health Council; Association Internationale de la Mutualité (AIM); European Consumer’s Organisation (BEUC); Comité Permanent des Médecins Européens (CPME); the European Network on Drugs and Infections Prevention in Prison (ENDIPP)

    Member organisations

    n/a

  • Financial Data

    Closed financial year

    Jan 2019 - Dec 2019

    Lobbying costs for closed financial year

    37,500€

    EU grant income for closed financial year

    233,563 € (Source: H2020 IMI)

    Other financial info

    None declared

  • EU Structures

    Groups (European Commission)

    Commission expert group - Civil Society Forum on Drugs#E02681 #http://ec.europa.eu/transparency/regexpert/index.cfm?do=groupDetail.groupDetail&groupID=2681 #Member #C#Sub-group on Relations with International Institutions

    Groups (European Parliament)

    None

    Communication activities

    The EMERGE project (Evaluating mHealth technology in HIV to improve Empowerment and healthcare utilisation: Research and innovation to Generate Evidence for personalised care) is a 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 which interface securely with relevant medical data and facilitate remote access to key healthcare providers. EATG will be acting as community partner, supporting standards for HIV care and guidelines for routine monitoring both in the involved countries and more broadly across the EU and potentially wider.
    ESTICOM – EUROPEAN SURVEYS AND TRAININGS TO IMPROVE MSM COMMUNITY HEALTH aims to strengthen the community response and raise awareness about the persisting legal, structural, political and social barriers hindering a more effective response to the syndemics of HIV, hepatitis viruses B and C, and other STI among MSM. The main activities include surveys among MSM (EMIS2017) and Community Based Health Workers (ECHOES) as well as a training programme for Community Health Workers intended to be adaptable for all EU countries.
    HIVACAR – EVALUATING A COMBINATION OF IMMUNE-BASED THERAPIES TO ACHIEVE A FUNCTIONAL CURE OF HIV INFECTION. The project aims to change the current paradigm of HIV treatment by obtaining a functional cure for HIV thanks to effectively targeting residual virus replication and viral reservoirs.
    EHVA – EUROPEAN HIV VACCINE ALLIANCE, AN EU PLATFORM FOR THE DISCOVERY AND EVALUATION OF NOVEL PROPHYLACTIC AND THERAPEUTIC VACCINE CANDIDATES. Project aims: To develop a Multidisciplinary Vaccine Platform (MVP) in the fields of prophylactic and therapeutic HIV vaccines. The MVP includes four components: 1) Discovery, 2) Immune Profiling, 3) Data Management, Integration and Down-Selection, and 4) Clinical Trials.
    EFOEUPATI - Ensuring the future of EUPATI beyond 2020 aims to ensure the sustainability of the results of the EUPATI project, to develop sustainable models of collaboration to ensure this, and put into place the infrastructure required for these to work, building on those already established under IMI-EUPATI.
    PARADIGM - Patients Active in Research and Dialogues for an Improved Generation of Medicines – This IMI project aims to provide a framework that allows structured, meaningful, sustainable and ethical patient engagement throughout three key decision-making points of the development of medicinal products: (i) the research priority setting; (ii) the design of clinical trials and (iii) the early dialogues with regulators and HTA bodies. The work builds upon previous initiatives such the European Patients’ Academy (EUPATI) and Patient Focused Medicine Development (PFMD).
    PREP IN EUROPE INITIATIVE is a partnership of European organisations (AIDES, AIDS Action Europe, AVAC, the European AIDS Treatment Group and NAM/Aidsmap) dedicated to increasing access to pre-exposure prophylaxis (PrEP) throughout the European region. It provides news and advice to help strengthen advocacy for PrEP throughout Europe. It seeks to to help organisations develop consistent policy demands for PrEP, and to provide networking opportunities for people working for PrEP access in different capacities throughout the continent.

    Other activities

    Achievements:
    EATG has been at the forefront of community involvement in treatment development in HIV and co-infections. Our models of community involvement are shared with patient organisations beyond the HIV and co-infections field. EATG has been leading on innovative techniques such as biomedical prevention and HIV cure research.
    EATG has been actively involved in setting up the EU Civil Society Forum on HIV, hepatitis and TB. Currently we are playing a leading role in the reform of the CSF.
    In 1997 EATG created the European Community Advisory Board (ECAB) to address key science and policy issues related to HIV and its main co-infections like hepatitis C or tuberculosis. Today and in the coming years, these ECABs will remain one of EATG’s core activities. This model of high-level scientific platform has been copied by other national and international community groups and networks (e.g. Portuguese CAB, EECA CAB, TB CAB, Positive Council Switzerland etc.)
    Via our ‘Sitges’ meetings, EATG has driven the community input in HCV cure development.
    EATG provides capacity building to different stakeholders, thus supporting better networking (especially in Central and Eastern Europe), increased capacity of PLHIV and health care providers, but also – via follow up activities – direct involvement of these people in new scientific and policy activities.
    Population(s) served:
    The European AIDS Treatment Group (EATG) is a patient-led NGO that advocates for the rights and interests of people living with or affected by HIV/ AIDS and related co-infections within the WHO Europe region. It is a network of more than 170 nationally based members from 47 countries in Europe. Our members are PLHIV and representatives of different communities affected by HIV/AIDS and co-infections. EATG represents the diversity of more than 2.3 million people living with HIV (PLHIV) in Europe as well as those affected by HIV/AIDS and co-infections.
    Our members are representatives of different communities affected by HIV/AIDS in Europe. Our members are expert patients and treatment advocates coming from the WHO European region continuously working together to end the epidemic by advancing research on HIV/AIDS, broadening access to treatment, training/mentoring new HIV/AIDS advocates and ensuring that the patient Community is a permanent and highly-recognised voice in the research arena.
    EATG has close links with groups and organisations within the area of sex work, drug use, MSM, migrants, prisoners etc.. Our work is also in close collaboration with organisations that work on related topics such as vaccine development, prevention, liver disease, sexual health or human rights issues such as stigma and discrimination.
    Involvement of PLWH:
    EATG is a membership driven organisation. Our members are all members of the General Assembly (GA), the highest decision-making body of the EATG. A major part of our members are PLHIV. The GA is called at least annually by the Board of Directors (BoD). The GA elects the members of the BoD and other bodies. Directors are elected for a period of two years.
    HIV positive members are also represented within each part of the structure (selected via democratic systems): Programme Chairs; BoD members, staff and other internal positions. EATG has 3 Programme Areas: Quality of Life, Combination Prevention and Partners in Science. Members become active within one or more of the Programmes, as part of designated Programme Committees or ad hoc task groups. EATG regularly organises consultations with its members and other groups. We actively support the GIPA principle.
    Members are the main drivers of our strategic development. With support from the office members, they draft our long-term strategy, set priorities etc. We have many HIV-positive members involved as representatives within different structures and positions such as steering committees, scientific committees, and advisory boards.

  • Meetings

    Meetings

    2 meetings found. Download meetings

    The list below only covers meetings held since November 2014 with commissioners, their cabinet members or directors-general at the European Commission; other lobby meetings with lower-level staff may have taken place, but the European Commission doesn't proactively publish information about these meetings. For more information about which commissioner is responsible for which portfolio, check out this link: https://commissioners.ec.europa.eu/index_en All information below comes from European Commission web pages.

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