Role of the HIV/AIDS community in science & advocacy. Nikos Dedes European AIDS Treatment Group 8 September 2017, Montpellier
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1 Role of the HIV/AIDS community in science & advocacy Nikos Dedes European AIDS Treatment Group 8 September 2017, Montpellier
2 Informed Patient/Advocate Treatment information & Co decision about personal health From scrutiny of public money on research, to grants review Monitoring and participation in Drug development and clinical research Members of Scientific Committees, CABs and Guideline Panels Experts and members at Regulatory Authorities Heads of major research focused organisations International Organisations (WHO, UNAIDS, Global Fund, UNITAID, Medicines Patent Pool) National Strategy and Programs
3
4
5
6 EU Russia Dialogue on HIV/AIDS December 2007, Moscow
7 The 80s.
8 Denver Declaration (1983) Nothing about Us, Without Us We condemn attempts to label us as victims, which implies defeat, and we are only occasionally patients, which implies passivity, helplessness and dependence upon the care of others. We are people with AIDS
9 Denver Declaration (1983) Nothing about Us, Without Us We recommend that people with AIDS: 2 Be involved at every level of AIDS decisionmaking and specifically 3 Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge
10 EU Russia Dialogue on HIV/AIDS December 2007, Moscow
11
12 Impact of ARVs
13 Dallas Buyers Club a film by Jean-Marc Valle
14 Community mobilisation
15 How to Survive a Plague afilm by David France
16 ACT UP
17 A History of ACT UP a film by Jim Hubbard
18 1988 FDA demo
19 1990 NIH demo
20 CABs Community Advisory Boards Adult AIDS Clinical Trials Group (AACTG) Community Programs for Clinical Research on AIDS (CPCRA) Pediatric AIDS Clinical Trials Group (PACTG) HIV Prevention Trials Network (HPTN) HIV Vaccine Trials Network (HVTN) Medical Research Council (MRC) Agence Nationale de Recherche sur le Sida (ANRS) Numerous industry led (drug or trial specific)
21 EATG (European AIDS Treatment Group) Founded in members from 45 countries involved in local NGOs and related to 30+ networks Mission Ensure fastest possible access to state of the art medical products or devices and diagnostic tests that can contribute to the prevention or treatment of HIV and related diseases Fields of activities Treatment information Training and capacity building Drug development and clinical research Policy / Advocacy
22 ECAB November 1997 (European Community Advisory Board) to advise the research community on the needs of the patient community and the appropriateness of proposed research to advise the community on the aims and expectations of a research proposal and the appropriateness of the research
23 Trainings & Lectures Good Clinical Practice Statistics Immunology Pharmacology Virology Hepatitis co-infection Pharmacovigilance Reproductive health Clinical Trial s design Evidence based medicine Clinical Trials Networks Cohorts EMA Regulatory authorities Pharmacoeconomics - Health Economics Prevention Research Media Relations
24 2007 (updated 2011)
25 2010
26 New Paradigm for Involvement Drug & Clinical Research Social Sciences Implementation Science Cure research Epidemiology & Disease burden Evidence based Policy
27 Women s Vote Germany 1918 France 1944 Switzerland 1971 Iraq 1980 Lichtenstein 1984 United Arab Emirates 2006 Vatican
28 Acknowledgments Carlton Hogan Lynda Dee Matt Sharp Kevin Fisher
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