1.  The Work of Civil Society in the Field of HIV Prevention Brussels, 23 February 2011 The Work of European AIDS Treatment Group (EATG) 1

2. EATG at Glance  Founded in 1992 as patient-led advocacy organization focused on treatment activism and treatment advocacy  Represents and defends the treatment-related interests of people living with HIV and AIDS (PLWHA)  Strives to influence changes in legislation and in development, testing and approving of anti HIV treatments  Nowadays recognized as leading European patient s’ community authority on HIV/AIDS and HIV/AIDS treatment issues 2

3. EATG Mission To achieve the fastest possible access to state of the art medical products, devices and diagnostic tests that prevent or treat HIV infection or improve the quality of life of people living with HIV, or who are at risk of HIV infection 3

4. EATG Global Aims  To enable PLWHA or at risk of HIV infection and their supporters to significantly influence the development, testing and approving of HIV treatments  To advocate for the best practices of care and treatment  To advocate for rapidly available existing and new HIV treatment  To promote the access of latest available information about treatment legislation for patients, health care providers, as well as policy makers  To influence changes in legislation and patient law in order to support the lowest achievable cost for HIV treatment, including the support for generic medicine  To monitor the changes in health care systems and policies to ensure that the rights and quality of services influence positively the quality of life of PLWHA 4

5. EATG Structure  More than 90 members from more than 35 countries  Secretariat and Board of Directors  European Community Advisory Board (ECAB)  Policy Working Group (PWG)  Development and Membership Working Group (DMWG)  Trainers Working Group (TWG) 5

6. ECAB – science and community  More than 60 members from more than 30 countries  Interactions with:  researchers and scientists (networks of excellence, input in scientific conferences, treatment guidelines)  with pharmacological industry (drug development, clinical trials design, community watchdog, informed consent)  with regulatory agencies (European Medicinal Evaluation Agency - EMEA, national regulators) 6

7. ECAB - EMEA  EMEA Patients’ and Consumers’ Organizations Working Party  Package leaflets/summaries: mandatory reviews on legibility, simplification  Guidelines on the clinical development for the treatment of HIV, HCV  Scientific Advisory Group 7

8. ECAB Main Activities 8  Organizing regular HIV/AIDS internal meetings and thematic meetings  Building internal capacity by organizing regular trainings for members on prominent HIV research topics  Reviewing clinical trials protocols  Collaborating with national and regional Community Advisory Boards - CABs (or related bodies) and supporting the creation of new CABs in the WHO-Euro region  Taking part in scientific networks and forums  Following up trends in HIV/AIDS research (and its co-infections)  Taking part in research and science projects funded by the European Commission

9. PWG – monitoring the political health agenda of the EU institutions and EMEA  Closely monitors the EU agenda on issues that affect the goals of the EATG  Prioritizes those political initiatives and issues likely to have the greatest impact upon the EATG aims  Promotes the EATG role and its policies before the European and multilateral institutions  Represents the EATG mission statement versus public health institutions and policy makers at European and international levels  Advocates for equal and wide access to HIV treatment and care, as well as for respect of human and health rights of people affected or threatened by HIV and AIDS  Advocates for better organization of clinical trials throughout Europe  Works together with other NGOs and key opinion leaders at European level to further the EATG goals 9

10. PWG Main Thematic Areas  Access to Treatment and Care Pricing (Pharmacoeconomics)  Free Trade Agreements, Health, Trade and Intellectual Property  Surveillance and epidemiology  Sexual and Reproductive Rights and Health  Research and Community / Drug Safety and Patient safety  Positive Prevention / New Preventive Technologies  Human rights, Stigma, Travel Restrictions and Criminalization  Information to Patients and Health Literacy  Drug Users, Prisoners, Migrants and Ethnic Minorities  Central, South-Eastern and Eastern Europe and Central Asia 10

11. TWG – ETAG training hub 11  Organizing and conducting trainings on HIV treatment literacy and treatment advocacy  Target group: participants representing different groups and organizations working in the field of HIV prevention  Target regions: South Eastern Europe, Russian Federation, Ukraine, Belarus, Central Asia, Central Europe and the Baltic states  Development and dissemination of Manuals on HIV treatment literacy and treatment advocacy  Capacity building through active involvement of more local trainers

12. 2007 – 2010 ETAG Achievements related to HIV Prevention 12  Took an active role in shaping the political agenda at European and international level, thus led the debate on important human rights related topics, including equal access to treatment and care for PLWHA or at risk of HIV infection  Conducted regular meetings and consultations with stakeholders directly involved in clinical research and drug development  Ensured greater awareness and contribution towards progress and outcomes of scientific research projects  Increased capacity within Eastern and Central European countries in their efforts to secure better access to care and therapies for HIV, HCV, substitutions etc.

13. 2011 ETAG Aims related to HIV Prevention 13  Continue with core activities: science, lobbying and trainings  Call for action on co-infections  Create an effective and flexible long-term strategy for 2012 – 2015

14.  Thank you! Ninoslav Mladenovic, LL.B., J.D., LL.M. 14