Everyone wants to be normal, don’t they? But the HIV community is less unified in the question of whether it’s a wise move to “normalize” HIV.
Can a life that's been turned upside down ever be considered normal?
HIV has for decades been the subject of what we call exceptionalism - treating HIV differently from other diseases in law, policy, funding and even in terms of public attitudes to it. 39 million deaths since the epidemic started, and which, importantly, still continue at the rate of about 1.5 million per year, have seen to that.
Indeed the historical argument weighs heavy in the hearts of those who are reluctant to see HIV normalized. Said 2010 research published in the journal of the International AIDS Society “In the history of public health, HIV/AIDS is unique; it has widespread and long-lasting demographic, economic, social and demographic impacts. The global impact has been unprecedented. AIDS exceptionalism – the idea that HIV requires a response above and beyond “normal” health interventions - began as a Western response to the originally terrifying and lethal nature of the virus.” So now that HIV is termed a “chronic manageable condition" -- although some will dispute that – should that change HIV’s hereto exceptional status?
That status is of course more than a public health issue. Long term survivors of HIV, many of whom experienced great personal loss, view it as disrespectful to downgrade the world view of the virus in any way. I can understand that. Many of us have a very personal relationship with the virus that does not easily welcome tampering with by outsiders. We have lived with the virus, know its consequences and often refuse to take them lightly. We have lived far from normal lives.
Any newly diagnosed poz gay man venturing into the dating pool in Canada will in fact quickly learn that many view him as far from normal. It is not difficult for him to feel like an outcast. He feels different – and others view him as different from them. (I B CLEAN - UB2). Normal, it seems, is being HIV-negative – or thinking one is.
That view of HIV as different from any other condition is bolstered by two significant factors – criminalization of non-disclosure, exposure of transmission (depending on the jurisdiction) and HIV-related stigma. Opponents of an end to exceptionalism argue that HIV will never be “normal” until both stigma and criminalization are off the table.
I’ve noticed too that those who work in HIV are less enthusiastic about seeing HIV normalized than others. They may feel they need to protect diminishing funding sources by stressing HIV’s continued impact. It’s a viewpoint that doesn’t come without vested interests being potentially at play, but in fairness, those who work in HIV are experts who see and deal daily with the ravages that HIV can still inflict. They know what the epidemic looks like on the ground – and it can look far from normal.
But then there’s the other side of the coin. Normalizing HIV has advantages, to be sure.
These are most often cited in terms of HIV testing and the desire to increase uptake to reduce new infections and engage infected people earlier. The advantages of normalizing HIV testing are stressed by many experts. Said CATIE in a recent review of HIV testing in Canada “In the past few years, several guidelines have been released in order to encourage the uptake of HIV testing in Canada. For example, PHAC and the governments of British Columbia and Saskatchewan have released guidelines recommending that the offer of an HIV test be made part of periodic routine medical care.” Similar guidelines have been issued by the WHO promoting the normalizing of HIV testing but despite the proliferation of global and national recommendations which have follwowed, for reasons which are unclear, the majority of Canadian provinces have declined to follow suit.
Normalizing HIV testing is often cited as a means not only of reducing new infections but in reducing HIV-related stigma, of course.
Arguably, normalizing HIV results mot significantly in how it impacts the lives of those living with HIV – how HIV feels, the burden it imposes on one’s life and interactions with others. I’m wary of those who don’t readily acknowledge HIV is different now. Treatment is better, life expectancy is better, side effects tend to be less and many people live pretty normal lives after being diagnosed, continuing to work for instance, or even excelling in athletic pursuits, business and government. Serodiscordant relationships are common. HIV in fact, far from being a preoccupation, is often cited as only a small part of a poz life. We hear all the time “HIV does not define me” or hold me down in any way
That attitude is far from universal, and is more often heard from those who live with privilege than those who don’t, but it is perhaps becoming the defining voice of our times.
True there is conflict here between prevention messages that try to dissuade negatives from seroconverting, implying almost of necessity and however veiled, that being poz is undesirable. But as I said in a recent PositievLite.com article on public speaking “We have to convey that people living with HIV are increasingly living strong and healthy lives, and are no danger to anyone. That in itself is a powerful antidote to stigma. Whether a message that depicts us as happy and healthy is a good prevention message no longer concerns me. If we are to battle stigma truly effectively, we cannot portray HIV in the developed world, or by extension the experience of living with HIV, as something to be scared of.”
I guess what I’m swayed most by is that normalizing HIV and seeing an end to HIV exceptionalism is a powerful way to combat stigma, make us less prone to prosecution and reap public and individual health benefits by increasing testing uptake. I think we can do that while still honouring the past, while still recognizing that being poz is still far from a normal condition for some, and that 1.5 million deaths annually is far from normal, let alone acceptable. I think we can do that, although the challenges are huge, while protecting AIDS funding because those terrible numbers of casulaties speak for themselves.
In the longer term. HIV has to be normal – or gone. The question is when. Let’s look forward to the day when the virus is no longer with us and when every single aspect of normalcy can indisputably be returned to our lives.