HIV Prevention Trials-Creating Effective Partnerships: the West and Central Africa Experience Dr Baafuor Opoku SAVVY Project, Kumasi, Ghana

Topics The regional meeting Processes Report

The Abuja meeting West and Central Africa Regional consultation. June 1-3, 2005, Ladi Kwali Conference Centre,Abuja Sheraton Hotel in Nigeria Participants were from Uganda, Nigeria, Ghana, Cameroon, and Senegal

Participants Investigators/researchers involved in new HIV prevention research IRB chairs/ members, Community advocates, ethicists, People Living with HIV/AIDS (PLWAs), Civil society groups.

Objectives To share experiences and lessons learnt in scientist- civil society partnerships in HIV prevention trials in the Region. To define and develop mechanisms for establishing and maintaining meaningful scientist- civil society partnerships to build consensus on design and to ensure that emerging issues are addressed

Processes a)Presentations from researchers, advocacy groups and civil society at plenary sessions (listed under ‘Acknowledgements’) b)Group work, which used papers, including the following as background documents:

Gaps and Inconsistencies in Ethical Guidance for HIV Prevention Research – A UNAIDS background document Report on the Debate( 21st of April 2005) at the Royal Tropical Institute, Amsterdam organised by Share-Net and Ministry of Foreign Affairs with support of IAVI Online consultation: Ethical frameworks for HIV Prevention Trials. Summary report. African Microbicides Advocacy Group (AMAG) International AIDS Society Stakeholder Consultation to Address Issues Related to Tenofovir Prophylactic Research May 2005, Seattle, Washington, USA

Group work 2 formats Researchers alone on one hand, vrs others (advocates, ethicists, civil society) A mixture of both groups

Plenary sessions Experiences and lessons learnt included  Little knowledge on the issue of clinical trials both in academia and the general public  Mistrust between scientists and community  Coaching of recruits by earlier recruited trial participants to fit into eligibility criteria  The powerful place of female advocacy groups

Negative publicity for trials by media The role of research programmes in managing participants who seroconvert during research Civil society is so diversified because of so many stakeholders; so they fight among themselves rather than partner each other for common goals.

Group work Reports 1. Our recruitment strategies re-enforce gender stereotypes  Women and male condoms instead of female ones  No direct male involvement in such trials  Increased stigmatization of women recruits. 2. Partnership with community; the need to clarify the definition of community; the need to involve the community (opinion leaders and advocacy groups) at an early stage; have their inputs reflected in protocol and inform them on research outcomes. 3. Trial participants; informed consent must be obtained in language understood by participants in presence of trained witnesses (if necessary); autonomy and intelligence of participants not to be under- estimated, however.

4. Ensuring meaningful civil society involvement in HIV prevention research creation of platform for engagement; (NGOS,CBOS, etc). communication systems in the community that will allow information sharing. 5. National HIV/AIDS plans and policies should facilitate, not hinder HIV prevention research. Reorganisation of HIV research as a priority. Set guidelines on areas of importance that will create enabling environment use of institutions like NEPAD to set guidelines

6. Ethical committees; capacity of some IRBs questioned. Need for standardized and ongoing training for IRBs which must be evident before their approval of any study is accepted. The need to put in place a national coordination committee for IRBs.

Acknowledgements 1.The basics of clinical trials-Scientific and ethical review challenges-(Morenike Ukpong) 2.Ethical Frameworks for HIV Prevention Trials: An Online Consultation (Olayide Akanni) 3.Creating Effective Partnerships for Clinical trials. (Shaun Mellors) 4.Community involvement in new HIV prevention technologies (Olayide Akanni) 5.Experiences and Challenges in HIV Prevention Research in Ghana. (Dr. Baafuor Opoku) 6.Regard furtif sur le monde a travers l’essai tdf:lecons apprises et leurs implications futures ( Dr Henriette MEILO) 7.Lots of talking – moving us where? Recommendations, Lessons & Gaps from other meetings (Manju Chatani) 8.Gaps and Inconsistencies in Ethical Guidance for HIV Prevention Research (Shaun Mellors).