HIV Vaccine Awareness Day: A reflection

By Steve Wakefield

HIV Vaccine Trials Network, Seattle, WA, USA


Community responses in times of intense need are often the most effective agents for change. We have had the opportunity to witness the brilliant effect of human beings in action recently during several hurricanes and mass shootings in the US. Advocacy and change have been fueled by historical movements as well, such as the Boipaton massacre in South Africa that prompted local, and eventually global, efforts to end apartheid. Injustice and inhumanity, hate and oppression, have also sounded the clarion bell that demanded and demands unity, and encourages collective gathering for strength and sustained hope in the face of inequalities.

As we reflect on HIV Vaccine Awareness Day (HVAD), there are advances brought forward by medical science, as well as a continued need for communities to lead the charge for change. For HVAD, let us reflect for a moment on critical points in HIV’s history, while also considering how to increase our efforts, individually and collectively, to get us to an HIV vaccine.

Early in this epidemic community members took to the streets. Communities also gathered to share information about any scientific development which seemed hopeful or useful. ACT UP, TAC and other groups fought governments because they were not doing enough, or not doing it fast enough, or not doing it the right way.

Community responses brought a sense of passion and urgency to make a difference, processing grief and anger, or because many were afraid their own time might be short due to the mysterious virus. Scientists and providers frequently left their labs or the bedsides of their patients to join marches and demonstrations. Others worked hard from inside hallowed halls to quietly identify ways to accelerate change.

The ongoing debate regarding what is needed most in an HIV vaccine response, t-cells or antibodies, continues. HIV and research myths have continued to have validity despite an army of Community Advisory Board members and other advocates who immerse themselves in the science and can interpret trial results and progress.

Community emphasis on building and leveraging key partnerships to ensure stronger voices and policy support for HIV vaccine research has struggled side by side with an enhanced behavioral research agenda to support engagement in trials. Barriers to participation in HIV preventive vaccine studies have persisted, including historical mistrust of medical providers and research.

It may be easier for persons already diagnosed with an incurable illness (HIV) to participate in research than it is for healthy, uninfected persons who do not think of themselves as being at risk to join a study.

Vaccine study participants and communities of otherwise healthy individuals are asked to make personal sacrifices for the sake of research.  They must commit time, respond to invasive and personal questions, and potentially face criticism from their family, friends, and communities.  The vaccines they receive may not provide any level of protection nor offer any immediate or long-term benefits.

Many still hold on to unfounded myths such as “you can get HIV from a vaccine,” or wonder how researchers can test a vaccine without intentionally infecting people, while others say they believe a vaccine exists but is being kept secret.

Fostering trust and increased understanding of HVTN’s research begins with updates during potential study concept stages, with a goal of moving persons from community awareness of the scientific agenda through engagement during study planning, and community ownership throughout the time a study is being conducted.

With this in mind, HVTN community engagement partners are in regular contact with local community stakeholders, country level persons from multiple disciplines, and global HIV prevention stakeholders.

This time in the history of the HIV epidemic is bittersweet. There are exciting new tools for treatment and prevention, and funded cure research is occurring with remarkable attention across biomedical disciplines. Extraordinary advances in the treatment and prevention of HIV infection bring many to the conclusion that it is possible to end the HIV epidemic through scaling up these interventions.

At the same time, there is a lack of resources to provide for those at highest need, and a surge in stigma/discrimination. Politics are once again placing the lives of people in need on the back burner.

One new challenge is to be vigilant and hopeful while working with warriors who have been leading the charge. We must do this while developing the next generation of people who can exude unity, gathering for strength and sustained hope.

* S. Wakefield is the Director of External Relations for the HVTN. These thoughts and others originally appeared as a World AIDS Day Reflection in HVTN’s Community Compass.  Full article at:

http://www.hvtn.org/content/dam/hvtn/CommunityCompass/CommunityCompass-2017-Issue2-ENGLISH-Web.pdf

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