Making Space for Community Educators and Activists at CROI

March 1, 2016

Ntando is the Community Engagement Coordinator at the Desmond Tutu HIV Foundation in Cape Town, South Africa, a co-convener of Advocacy for Prevention of HIV and AIDS (APHA) and an AVAC Fellow Alumni. This blog is one in a series written by community scholars who attended CROI 2016.

“So you see, there’s relevance for community educators and health advocates to be at CROI.”

This was my response to a hepatitis clinical researcher I sat next to on my flight home. Having seen his CROI (Conference on Retroviruses and Opportunistic Infections) backpack, I mentioned that we had been at the same meeting. My travel companion, a Dutch PhD student researching acute Hepatitis C infection, asked how I found the conference. When I responded with approval at the high standards and organisation at CROI, he seemed disappointed to learn why I had been there. After finding out that I am neither a scientist nor researcher, he said, “I do not think there’s space for non-scientists to attend the meeting.” I was amazed by his comment. His comment highlighted that some researchers think that conferences like CROI should be exclusive to scientists and researchers to share and discuss amongst themselves. How is it that some researchers think the problems they are trying to solve can be dealt without input from the very same communities who face these issues first-hand?

It is vital that conferences, such as CROI, continue to provide space so that communities are included in the scientific environment where the problems facing communities and possible solutions are discussed. I feel honoured to be recognized as a community representative because of my community engagement and advocacy work in the field of biomedical HIV prevention. The conference re-emphasised the role of science in seeking solutions for the health problems brought about by retroviruses and opportunistic infections in South Africa and Africa, and how these are a global concern. Updates were given on the many diseases that can devastate communities, including HIV, tuberculosis, Hepatitis B and C, other sexually transmitted infections, cancer and chronic non-communicable diseases in the context of HIV.

As a community worker in the midst of this scientific arena where there is a shared language of complex terms: antibodies, adaptive and/or humoral, other immunity or immunogenicity, gene therapies, pathogenesis and metabolism, reservoirs, relapse, remission, pharmacology and pharmacokinetics, processes from laboratory, via animals to people, I often find myself desperate to hear how this translates to real change for communities. That is a bottom line I yearn for as each passionate scientist presents his or her research as if nothing else matters in the world. And indeed, perhaps in context of wanting a solution to a health problem, nothing else does matter. Many members of my society deal with infinite challenges on a daily basis, which include illness of close family members, crime, unemployment, violence and poverty to name a few. In this context, science is only part of the solution.

At this meeting, I experienced the excitement, emotions and sense of fulfilment of successful research when the dapivirine ring study results were announced. The bottom line for me is: how difficult it is going to be to bring this, or other tools, to benefit the population groups in my society who need these tools the most, including young girls, women, gay men, sex workers and many more?

Part of doing what I do requires that I continually attempt to figure out how much of the science my non-scientifically trained mind should be stretched to understand—why and how a biomedical intervention works or doesn’t as much as expected. I seek to dissect the statistical numbers and to understand how a virus interacts with the body and how it might be stopped or suppressed. This understanding allows me to help my community reach a level of not only physical, but social, mental and emotional state of wellbeing to support all to live productive and fulfilling lives. This is my contribution against a range of social and human injustices that are brought about by diseases, harmful societal belief systems and potentially detrimental policies enacted by governments.

So in the midst of a scientific conference, there are a lot of opportunities to figure out all of this and learn, especially when my hand is held by those who have done this work before me and share my interests. The conference provides the opportunity for community members from all over the world to interact, engage in serious conversation, laugh and share amongst each other. At CROI, many scientists acknowledge the important role of community members like myself and my peers, though they may vary on how they express this acknowledgement (some being better than others at it). This helps remind me why I need to be there: to constantly find and raise my shaking and intimidated voice to be heard to elevate my communities’ interests. I was happy when my fellow traveller, the scientist on the plane, eventually understood the role I have to play in scientific research and at CROI. As we spoke, he saw our conversation as an opportunity to practice a talk he had prepared for a session two days after he got home. It showed me he has the same interest and vulnerabilities as me in the seriousness of his work.

I give thanks to organisations and the passionate people behind them who use their positions to facilitate a platform for people, like me, to have a voice and equip me to prepare a platform for a voice for those who come after me. Thanks to AVAC, Black AIDS Institute and the CROI community liaison sub-committee for this experience, and constantly facilitating in this provided space for a community of likeminded community workers, health advocates and activist who are faced with similar burdens in different parts of the world. Thanks importantly to my home organization, the Desmond Tutu HIV Foundation, where all the science collides on a daily basis with communities, as well as all who seek an end to all the devastation caused by HIV, AIDS and TB.