November 6, 2015
In this article, South African HIV prevention activist and member of the Vaccine Advocacy Resource Group—a small, global group of advocates specifically focused on the HIV vaccine research field—Tian Johnson reflects on his participation in the recent HVTN Conference in Cape Town, his hope for a vaccine and the necessity of advocates’ involvement in the search. This first appeared in NGO Pulse.
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, as is often still the case with in many other families, spoke in hushed tones about the cause of her death: pneumonia, tuberculosis (TB)… 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 was our shared upbringing.
As I landed in Cape Town for the bi annual meetings of the HIV Vaccine Trials Network – 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 could look like. What would it mean for millions of women like Miranda, living with or at risk of contracting HIV?
I have worked in HIV prevention for nearly two decades now. So, as I imagine a world with an HIV vaccine, part of me cannot help but be sceptical. I wonder if it would have made a difference to Miranda at all. Would she have been able to access the vaccine? 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 been received like a hero at her local clinic by health workers proud of her: this beautiful Afrikan 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, the vaccine world is a scary place. It is 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) trials, and acronyms like RV144 can be pretty intimidating for an activist who is programmed to just get on with it and start advocating for universal access to a vaccine!
Part of my journey as a member of the Vaccine Advocacy Research Group (the VARG, if you want to sound cool) is to bring advocates from related areas of HIV prevention advocacy into the vaccine fold in order to build our capacity and to support activists to access the researchers. As we get one step closer to creating 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. And just this month, the School of Medicine at the University of Maryland in Baltimore launched the first phase of clinical trials for an exciting new product. In this trial the vaccine is intended tackle virus at the moment of infection, when there is a greater chance of neutralising it. Some pretty impressive people are leading this work including Dr. 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. Spaces 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 does not 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 scandalised and individuals do not see their health, success, and prosperity as being linked to that of their neighbours, we truly have a momentous task ahead of us. The work of changing minds and hearts is never easy, but it is essential. And its 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: so much of it emanating from world-class South African science and supported by the South African Government. 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 and a male condom when I want, a vaginal or a rectal gel to stop me from getting HIV. Whatever world we imagine, we need to keep on doing just that. They say when you become a parent you do everything you can to ensure that your own children have a better life then you had. So we need to keep on working, keep on moving forward, not just for us now but for those who are growing up in this challenging world. Boys like my nephews, who can access options that my sister, their mother, never had.
I am glad I spent a week at the HVTN meetings. They were insightful and at times filled with equal parts of hope and anxiety at 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. And we must imagine and ACT to realise a better future.