On May 20, 2016, my second day as an intern with the Forum for Collaborative HIV Research, I attended a plenary session of the Full Group Meeting of HIV Vaccine Trials Network (HVTN). The session I attended was entitled, “Community Engagement and Advocacy: How do they intersect?” The session was moderated by Susan Buchbinder of HVTN/Bridge HIV and involved a panel of multinational representatives with different roles within HVTN: a Community Advisory Board (CAB) member, an Investigator of Record, a Community Educator and Recruiter (CER), as well as a representative of AVAC: Global Advocacy for HIV Prevention, and the Director of External Relations at the Fred Hutchinson Cancer Research Center that hosts the HVTN. In addition, the plenary session reserved time for members of the audience to engage in furthering the conversation, contributing to the involvement of additional perspectives.

The first speaker, Mitchell Warren, is the Executive Director of AVAC. He noted that vaccine development should really include “R, D, & D: Research, Development, and Delivery because without delivery the rest doesn’t matter.” I found this to be such a powerful statement as researchers often focus on how science and technology can advance, but considering if and how these new advances will be accessible by individuals is equally as important.

Warren also presented a chart that compared contraceptive prevention methods to HIV prevention alternatives. By contrasting the sheer number of contraceptive options, such as barrier methods, oral contraception, IUDs, rings, etc., that accommodate a variety of different populations giving them a plethora of options that may best fit their lifestyle, it is very easy to see the real lack of options for individuals seeking to reduce the risk of HIV acquisition.

I found this to be very striking, and a perfect example of the importance of delivery. With the recent success of PrEP, it has become apparent that this method of prevention is not always feasible. Right now, PrEP is a long-term and expensive option reserved mostly for members of populations at high risk. The need for a variety of options which are safe, effective, and accessible is vital, so that with different risks may choose an option that best fits their lifestyle.

Warren included a slide, “Px Paradigm 2016 & Beyond,” with recent advances which are starting to fill in these gaps.

This slide includes a red “?” under a gel method of HIV Prevention indicating progress in this method and a red “ü-?” under ring methods of HIV Prevention indicating that there have been studies for this method, but the results are not currently established.

Steve Wakefield, Director of External Relations for Fred Hutchinson/HVTN, member of the AVAC Board and Pride Foundation, emphasized the constant need to continue to be open, aware, and inclusive in the field. It was refreshing to be reminded of how much work is still left to be done. In a time of such excitement and progress in the field, it is important to be humbled with areas in which we can always be better.

Dr. Kathy Mngadi, an Investigator of Record with the Centre for the AIDS Programme of Research in South Africa (CAPRISA), highlighted her experience by stating that “informed knowledgeable communities support research.” She provided examples of how she and her team of investigators interact with the community in order to increase the health literacy and understanding of the individuals in those communities.

The most moving speaker of the session, Nombeko Mpongo from the City of Cape Town, shared her experience as a CAB member and what it means for her to be involved in HVTN. Mpongo described herself as a woman, an athlete, a religious leader, and a mother. She shared her involvement with the CAB, noting that it gave her the opportunity to identify gaps in knowledge and understanding in the community and to then reach out to health educators to help fill in those gaps. She spoke of trust, and emphasized the importance of health literacy. Mpongo disclosed her own HIV status, and her dream of knowing her grandchildren will never become infected with HIV.

I was inspired listening to Mpongo speak with such passion and pride about her position as a CAB member. She credited her experience with HVTN as a point of inspiration to better her community, better the HVTN clinical trials, and to better herself by pursuing higher education through studying psychology. She also emphasized the role of trusted community members, such as herself and the next speaker, to be able to interact with the community in order to increase health literacy and, therefore, enhance informed consent in these areas.

 The last speaker, Ross Malamatsho, is a CER with the Setshaba Research Centre who described his personal experience with recruitment and education. I was impressed with the level of commitment and patience that Malamatsho exhibited in his recall of daily interactions with the community. Ross spoke of being approached everywhere – even during doctor visits – to explain updates and issues regarding the trials. He expressed that he always takes the time to explain what he can do and to be open.

Overall, I really appreciated this plenary session. It was very inspiring to get a glimpse into the world of an organization such as HVTN. It was especially moving to see that this organization puts special emphasis on community engagement, advocacy, and hearing the voices of people involved – from a variety of different roles.

As an MPH student, with a concentration in Infectious Disease and Vaccinology, it was equally exciting to witness some of the most cutting-edge organizations speak to new scientific exploration. Although the emphasis of this plenary session was not on the science directly, the discussion allowed me to gain a deeper understanding of the breadth of the work being done. I feel as though I came out of this meeting with a better understanding of the direction of HIV prevention science and the extraordinary work of everyone involved to ensure that the communities in which they interact have a voice in the work as well.