Overview
Lobbying Costs
37,500€
Financial year: Jan 2019 - Dec 2019
Lobbyists (Full time equivalent)
1.5 Fte (6)
Lobbyists with EP accreditation
6
High-level Commission meetings
2
Lobbying Costs over the years
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Info
European AIDS Treatment Group (EATG)
EU Transparency Register
49959188061-85 First registered on 13 Feb 2012
Goals / Remit
For 2020-2025, EATG’s mission is:
Equitable, speedy and sustainable access to:
• effective treatments and holistic care for all people living with HIV and associated infections and morbidities, and
• effective prevention and diagnosis for all communities affected by HIV and associated infections and morbidities.
EATG will focus on 3 Programme Areas:
Quality of Life In line with its mission to advance equitable, speedy and sustainable access to effective treatments and holistic care for all people living with HIV and associated infections and morbidities.
Combination Prevention
In line with its mission to advance equitable, speedy and sustainable access to effective prevention and diagnosis for all.
Partners in Science
In line with its mission to advance equitable, speedy and sustainable access to effective treatments and holistic care for all people living with HIV and associated infections and morbidities.Main EU files targeted
Pharmaceutical Strategy - Timely patient access to affordable medicines : consultation on the roadmap
- Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL on the establishment of a Programme for the Union's action in the field of health –for the period 2021-2027 and repealing Regulation (EU) No 282/2014 (“EU4Health Programme”)
- COM/2020/405 final and European Parliament EU4Heath draft report
- Communication COM/2018/233 final on enabling the digital transformation of health and care in the Digital Single Market; empowering citizens and building a healthier society
- Cancer mission recommendation
- EU drug policy post-2020
Previous input/submissions:
- COMMISSION STAFF WORKING DOCUMENT SWD(2018) 387 final on Combatting HIV/AIDS, viral hepatitis and tuberculosis in the European Union and neighbouring countries - State of play, policy instruments and good practices
- Submission to EMA Consultation on the Role of big data for evaluation and supervision of medicines in the EU
- submission to EU drugs strategy 2013-20 – evaluation consultation(December 2019-Feb 2020);
- submission to EU Drugs Agenda and Action Plan consultation in June-July 2020
- ECDC: Public health guidance on HIV, hepatitis B and C testing in the EU/EEA: input as expert, 2018Address
Head Office
Mettmanner Strasse, 24-26
Duesseldorf 40233
GERMANYEU Office
Interoffices
Avenue des Arts 56-4c
Brussels 1000
BELGIUM -
People
Total lobbyists declared
6
Employment time Lobbyists 25% 6 Lobbyists (Full time equivalent)
1.5
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
6 accreditations were / are live (in bold) for the selected state of 07 Sep 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.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
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Categories
Category
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
EU Civil Society Forum (CSF) on HIV , TB and Hepatitis ;
EU Civil Society Forum on Drugs
WHO Regional Coordination Committee on HIV, TB and Hep
AIDS Action Europe;
European Public Health Alliance (EPHA);
European Forum for Good Clinical Practice (EFGCP)
European Patient Forum (EPF)
Platform for Cooperation with undocumented migrants (PICUM)
ILGA – Europe
International Committee on Rights of Sex Workers (ICRSE)Member organisations
n/a
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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
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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)
N/A
Communication activities
EU Civil Society forum on HIV, TB and Hepatitis relaunch and secretariat with AAE, EHRA, Correlations, TBEC.
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. TheEATG produced a brief on overcoming barriers to the implementation m-health solutions. On 2 September 2020, a multi-stakeholder meeting on the future of M-health in Europe was organised, drawing on the EmERGE project findings. The meeting also included a discussion on the EmERGE, mHealth and health systems in the EU and essons from the COVID-19 Crisis and the role of digital pathways in HIV prevention and care. 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 was a 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).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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Date 22 Jul 2019 Location Brussels Subject Access to medicines Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Alina Timofte (Cabinet member)
- Arunas Vinciunas (Cabinet member)
- Vytenis Andriukaitis (Commissioner)
Other Lobbyists -
Date 28 Nov 2016 Location Brussels Subject EU and NGOs action on HIV, TB and Hepatitis Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Paula Duarte Gaspar (Cabinet member)
- Vytenis Andriukaitis (Commissioner)
Other Lobbyists
- Meetings