Dean Beck
The Key to a Cure
Cure, stigma and hindsight
When I think of an HIV cure, in my mind’s eye I imagine 40 million people rejoicing, dancing, partying. I imagine the 400 million people directly affected; the families, friends, children and loved ones of those living with HIV and the relief on all of their faces. I think of the 40 million people who have perished, their sacrifice and the loss.
My early twenties coincided with the 1990’s. It was a period where Melbourne’s gay scene was at its peak. Commercial Road was jumping, 3Faces nightclub was pumping and dance parties like Red Raw and Winterdaze were annual events not to miss. This was also a pivotal time for people living with HIV as the promise of new and emerging drugs offered hope for the very first time.
For at least six of my friends, the promise of hope brought about by HAART HIV treatment wasn’t enough to counter the fear of their HIV diagnosis. For them, suicide was the only forward.
I cannot help but wonder that if the science around treatment had been better communicated, then perhaps hope might have been enough to allay their fears and they might still be with us today.
Hindsight is a wonderful thing, and to be fair, it has taken 25 years to know definitively that an undetectable viral load means you cannot pass HIV to your sexual partner. So why is it that in Australia today, stigma and discrimination towards people living with HIV remains crippling for some?
The answer: Communication! Where are national campaigns informing the general population of this new paradigm?
Community and the personal connection
I have dedicated the last eight years of my life to educating, informing and encouraging gay men to take responsibility for their own health and wellbeing. As a broadcaster and journalist, I’ve coordinated a global 24-hour conversation about HIV with the world’s leading scientists, medical professionals and community leaders. I have covered the world’s largest scientific and medical conference, AIDS 2014, when it came to Melbourne. I’m humbled to have been asked to be an ambassador for the ENUF HIV stigma campaign and my work has been acknowledged with numerous awards.
When I started doing this work, I was an HIV negative man trying to bridge the gap between the sero-divide. Along the way, I became HIV positive and to be perfectly honest, it is different on the other side.
Why? Well, now the promise of an HIV cure is not some theoretical abstract medical breakthrough. Now an HIV cure represents hope once more.
Last year I received funding from the ViiV Community Grants scheme and the Victorian AIDS Council, to produce Australia’s first podcast series developed for people living with HIV. I was honoured to be able to launch the podcast at the 2016 Australasian HIV & AIDS Conference in Adelaide and you can check it out at insideHIV.net.
This year I won a scholarship from the HIV Cure Community Partnership to attend the 2017 Australasian HIV & AIDS Conference in Canberra. To say I was thrilled would be an understatement because this time my challenge was unlike anything that I had taken on board before. This time, I would be provided with a schedule of the scientific presentations to attend and to distil the information for people like you, reading this now.
At previous conferences, I had always gravitated towards the presentations highlighting public health initiatives and the social science research that directly related to my community. This time it would be different.
Delving into the science – wait, what?
With my trusty field recorder in hand and pen poised over my little red notebook, I sat in the front row of my first science presentation. And then a second, third, fourth, fifth and sixth.
When it came to the lunch break on day one of ASHM, it’s fair to say I had a pounding headache, two and a half hours of recorded presentations and no ?@#*ing idea how anything I had heard related to a cure for HIV.
Don’t get me wrong, I was blown away by the intelligence, passion and commitment that these extraordinary young scientists have for their work, but I had absolutely no idea how their research fits into the universal goal of achieving a cure for HIV.
Sure, I’m no science journalist and have never professed to be, but by the end of day one, I was so frustrated I was getting angry. So I began to ask around, was I the only one in those sessions who felt like this?
Much to my surprise, many of the scientists who sat in on the science presentations had absolutely no idea what the presentations were about either. Strange as it may seem to those with PhD’s delivering this ground-breaking information, but if the opening PowerPoint slide is in scientific code, the body of their presentation is in code and the key findings are in code, then it’s no wonder that no one has any idea of what is going on.
My hope of transferring the latest information regarding an HIV cure, distilled from our nation’s brightest young scientists, had turned to hopelessness.
That, my scientific friends, is inexcusable.
If someone who has more than a vested interest in the outcome of their research, walks away without an understanding of how their projects fit into the grand plan, then something is wrong.
Moving forward (or how scientists can better take community for the ride)
As I was lamenting my situation to Professor Sharon Lewin from the Doherty Institute, it suddenly hit me. Here I was articulating my frustrations to one of the world’s greatest science communicators. I had been spoilt.
Like Professor Brian Cox is to astrophysics, Professor Lewin is to HIV and its cure (only without a BBC contract). The interactions I had previously had on the science of an HIV cure, had either come from her or her mentor, Professor Françoise Barré-Sinoussi, who received a Nobel Prize for her discovery of the virus causing AIDS and her ability to communicate its importance.
Am I being too harsh on our young scientists, those whom we pin our hopes on for a future without HIV?
No. After 35 years of mistakes, discoveries, advancements, breakdowns and breakthroughs, we are at yet another pivotal time in the HIV response. Communication is more important than ever as it is people living with HIV that will be called upon to advance the prospect and likelihood of an eventual cure.
At Professor Lewin’s request, I have agreed to assist in any way that I can to ensure young scientists can enrol the community of people living with HIV, assisting them in their communication so that we can all share in their supreme knowledge.
Now more than ever, how we articulate and communicate must unite everyone in the universal hope towards a cure. I have six friends who I wish could join the conversation.
