What an HIV Vaccine Would Mean: One Advocate's Perspective
Last month in Cape Town, South Africa, scientists from around the world met for the bi-annual HIV Vaccine Trials Network meeting. Human rights activist Tian Johnson was there and writes about what the discovery of an HIV vaccine would mean to him.
My sister Miranda died of AIDS in 2007 at the age of 35, a year older than I am now. She was a mother to three boys who had yet to reach their teens when she took her last breath. That last breath came in a hospital that, even after a prolonged stay, was unable to provide her with the most basic care.
My family, just like many other families, spoke in hushed tones about the cause of her death: pneumonia, tuberculosis… anything but AIDS. It was almost as if the mention of her name and the disease in the same sentence would erase everything she was and everything good that she had done. She was a sister to me (which alone required the patience of a saint) and a mother who did everything she could to provide her boys with the best childhood she could—far from the turmoil that surrounded our shared upbringing in Zimbabwe.
As I landed in Cape Town for the bi-annual meetings of the HIV Vaccine Trials Network (HVTN)—a global network whose goal is to develop a safe, effective vaccine as rapidly as possible for prevention of HIV infections globally—I wondered what a world with a vaccine for HIV would look like.
I have worked in HIV prevention for nearly two decades now. So as I imagine a world with an HIV vaccine part of me can’t help but be skeptical. I wonder if it would have made a difference to Miranda at all. Would she have been able to access the vaccine before she contracted HIV? Would she even have regarded herself as being “at risk” of infection? Would the nurse or doctor giving her the vaccine have judged her? In all likelihood, the same nurse probably would have judged her when she asked for a contraceptive just a few weeks before coming in for the vaccine. I wonder if Miranda would be able to live with the stigma of being “that woman” who got the “AIDS vaccine” at the clinic. Would her husband have gone with her? Would he take the vaccine too?
The other, more idealistic part of me imagines that she could access the vaccine with ease, that she would have received it like a hero at her local clinic by health workers who were proud of her: this beautiful African goddess who had chosen to make the journey that day to get herself vaccinated, to keep herself safe, to keep herself alive. Alive for me, her brother. Alive for her three boys.
From a distance, vaccine research can be unnerving. It’s a deeply scientific and privileged world (a world that I think needs many, many more black faces in it). Talk of “non-human primate” [monkey] studies and acronyms like RV144 can be intimidating to an activist who is programmed to get on with asking what this all means for communities and how can this benefit us all today!
Part of my journey as a member of the Vaccine Advocacy Research Group (VARG) is to bring advocates from related areas of HIV prevention advocacy into the vaccine fold in order to build our capacity around the science of vaccine research and to build relationships between us and the trial sites. As scientists inch closer to developing a vaccine that prevents HIV, the existence of groups like the VARG is increasingly important. The VARG is supported by AVAC (a global NGO) that supports advocates and community members to play a leading role in defining the HIV research agenda.
Although the world still does not have an HIV vaccine, research has been underway for many years, much of it built on work that is happening in South Africa. In addition to the many new vaccine candidates that are being pursued, just this month the University of Maryland School of Medicine in Baltimore launched the first phase of clinical trials for an exciting new product. In this trial the vaccine is intended to tackle the virus at the moment of infection, when there is a greater chance of neutralizing it. Some pretty impressive people are leading this work, including Robert Gallo, who was part of the team that identified HIV as the cause of AIDS and developed the HIV blood test.
As ground-breaking science happens around the world, we have a moral obligation to ensure that advocates are brought along for the journey in a meaningful way. Space must be created for learning and sharing and opportunities made for mentoring and engagement. As we have found out in the past, creating these spaces takes time and resources—resources that are usually the first to be cut when budgets are tight. The reality is that no matter how impressive the science is, it will have been in vain if it doesn’t fit into people’s daily lives and realities. Sadly, this is what we have seen too often over the years with male and female condoms, treatment, and other HIV prevention methods. A product can only work if it gets used. A key barrier to a product getting used is stigma, perhaps the most difficult aspect of uptake and use. As long as sexuality is scandalized and individuals do not see their health, success, and prosperity as being linked to that of their neighbors, we truly have a momentous task ahead of us. The work of changing minds and hearts is never easy, but it is essential. And it’s work that advocates and activists must lead, hand-in-hand with scientists.
As the first vaccine is likely many years away, we must keep the discussion alive. We need to force ourselves to imagine what the future of HIV prevention could look like. Imagine having a basket of options that we could pick and choose from depending on where we are in our lives: a daily pill to prevent HIV, an annual vaccine to do the same, a female condom when I want or a male condom when I want, a vaginal or a rectal gel to stop me from getting HIV. They say when you become a parent you do everything you can to ensure that your own children have a better life than you had. This is the same reason we need to keep on working, keep on moving forward with HIV vaccine research. The benefits if we succeed are not just for us now, but for those who are growing up in this challenging world. It is so boys like my nephews can access options that my sister, their mother, never had.
I’m glad I spent a week at the HVTN meetings. They were insightful and filled with equal parts of hope and anxiety about the momentous task ahead of us as we collaborate, learn, engage, and take time to listen to the multitude of lessons this virus has and continues to teach us about our resilience and tenacity to push ahead in spite of it. As we look forward to many more years of research and advocacy in the quest for an HIV vaccine, we will also keep the faces and memories of those that did not make it along the way first and foremost in our minds. We must imagine and act to realize a better future.
*A version of this article appeared in NGO Pulse, a weekly online publication focusing on non-governmental organization-related issues in Southern Africa.
Tian Johnson is a human rights advocate whose career has spanned the development sector in Africa, with a particular focus on women’s rights, sexual and reproductive health and rights, and HIV prevention. He has worked on conducting a national gender analysis in South Africa for the introduction of the tenofovir microbicide gel, set up national networks of female condom distribution and training programmes, and is a founding member of Project ARM (the African Rectal Microbicide Movement), GLAM—the Global Lube Access Movement, The International Female Condom Advocacy Platform, convenor of the 2014/5 HIV Prevention Research Advocacy Expert Group, and member of the Global Vaccine Advocacy Research Group housed at AVAC. He founded the African Alliance for HIV Prevention in 2011 where he consults today.