01 December 2014

Gains and Challenges

COCQ-SIDA's new campaign takes on HIV stigma by matching the gains in the fight against HIV/AIDS against the challenges that remain.

First of all, let's get the declaration of conflict of interest out of the way. I am the Executive Director of COCQ-SIDA and an HIV-positive participant in this campaign. The second role was more important in contributing to the content of the message, which was developed in collaboration with a number of COCQ-SIDA's member organizations and the participants themselves.

The challenge that many of us in the HIV movement face constantly is to present a real picture of what HIV is today, balancing the desire to encourage the HIV-negative to avoid transmission while ensuring that there is a place for people living with HIV in society. Fear messages have a short-term effect of scaring people into 'protecting' themselves against transmission, but these messages serve to stigmatize people living with HIV and the protective aspect is neither durable nor particularly credible in a context where the target audience might have acquaintances and friends living relatively well with HIV. People living with HIV, particularly those who might have been diagnosed recently, could see fear messages as discouraging, which is not helpful for them.

This campaign tries to find the balance of sharing the good news about HIV today – generally all about medical advances – and contrasting those things with the human rights challenges that do not seem to have moved in all this time, at least not in the right direction.

The messages of the campaign (with my added comments):

People don't understand my desire to have a child because I am HIV positive, but in 2014 a woman living with HIV can give birth without transmitting HIV to her child.
Most people announcing their pregnancy or their desire to get pregnant are greeted with congratulations and wishes of joy and happiness by those around them. Why should it be any different for a person living with HIV? Having to face the unfounded fears of those around you can rob you of the positive aspects of planning your life.

I have been refused medical services because I am HIV positive, but in 2014 the observance of universal precautions prevents the transmission of HIV.
Universal precautions are the simple procedures that health care professionals should be observing in all cases and not just when they are certain that the person before them might have a transmissible infection – that's why they are called precautions. Properly observed, these simple measures will prevent the transmission of HIV and many other infections…in both directions!

I couldn't get life insurance coverage because I am HIV positive, but in 2014 the life expectancy of a person living with HIV is more than 70 years.
Someone needs to redo the actuarial calculations that exclude people living with HIV from accessing life insurance. The combination of effective treatment for HIV and the fact that most of us have a regular medical follow-up that our HIV negative friends and family members do not have has brought us to a nearly level playing field with respect to longevity. It is telling that the only life insurance product we could find available to people living with HIV came with a price tag many times the cost of life insurance for someone without HIV. And how important is life insurance? Try getting a mortgage or a car loan without it.

I have been turned away as a volunteer because I am HIV positive, but in 2014 we know that HIV is not transmitted through casual contact.
Only fear and ignorance of how HIV is transmitted can explain a refusal to accept help from someone living with HIV. The impact on the individual – not "good" enough to offer help to others in the community – is one of isolation and rejection. No one should have to experience that, especially not when there is no justification for the refusal. There is no job that cannot be done by a person living with HIV, with the exception of blood or organ donor…but I don't think any of us wants to do either of those things.

I have faced a lot of obstacles in taking back my life because I am HIV positive, but in 2014 after a stay in a hospice a person living with HIV has regained the health necessary to return to active life.
It is telling that the person lined up to pose for this poster backed out before it was produced, being replaced with a drawn silhouette. Yes, people living with HIV can have crises in their health that require some additional assistance, and the role of housing resources for people living with HIV has evolved to the point that they are rarely now a place to go to die with dignity and much more a place to go to regain control of one's health to be able to return to life in the community. Our society's apparent inability to appreciate people for where they are, as opposed to judging them for where they have been, is completely unhelpful in the long run and quite devastating to someone trying to rebuild his or her autonomy.

People have been afraid of me because I am HIV positive, but in 2014 a person living with HIV and adequately treated does not transmit HIV.
Here we get to the question of fear in a more intimate setting. Apart from all of the ways we know to reduce the risk of HIV transmission – condoms, choice of activities, choice of position, post-exposure prophylaxis (PEP), pre-exposure prophylaxis (PrEP) – we also know and have increasing evidence to support the position that people with a well-controlled viral load don't transmit HIV. Yes, a cautious public health authority will always insist on the multiple conditions that make that true – and those conditions are all about things that can influence variations in the viral load between tests or present uncertainty about those things – but those advocating earlier treatment as a means to control HIV transmission who are not also willing to recognize the near elimination of infectiousness to the benefit of the person living with HIV (reduced threat of criminalization, perhaps?) have some serious contradictions in their argument.

The T-shirt Challenge

Another aspect of the campaign was to challenge people to wear a t-shirt with the bold statement "Je suis seropo" (I am HIV positive) for a day and to share their experience of doing that. Many found support among their friends and family, some got some sideways looks from strangers and one of the Montréal participants, asking her boss in a food products setting if she could wear it to work was refused that permission, her boss insisting they would sell no product if she did wear it.

I had to ask, beyond the reactions of others, how the people wearing the t-shirts felt when they put it on and when they revealed it in a public place. Every one of them had the anticipation of poor treatment, or stigmatization, and every one of them expressed some relief about taking it off at the end of the day. That, perhaps more than all the rest, measures the stigma which all of us living with HIV experience every day.

You can follow the campaign (in French only) at jesuisseropo.org. Click on Campagne acquis/defis for this campaign and on Actualité for the blog.

On a personal note…

The last poster (afraid of me) is my poster. If you want a back story on a situation that I lived through because of someone else's fear, I would suggest a piece I wrote on criminalization in 2012. I accept my responsibility to not transmit HIV and to take all measures to ensure that is doesn't happen. I resent, however, bearing all of the responsibility to be a teacher of knowledge that people should be seeking on their own and a protector of the health of those who will not step up to take responsibility to make their own efforts. Sometimes you just don't want to be a teacher and a social worker in every moment of your life.

I'm probably not the best example of living with HIV stigma. I have all the advantages that our society has to offer – I'm white, educated and middle class, I have a supportive family and friends and I have a job I will not lose by being public about my HIV status. If with all of these advantages my first instinct is to lower my voice when talking about my personal experience with HIV on the bus or in a public place, or to approach unknown situations with a degree of trepidation, I can only imagine the impact of stigma on someone who does not enjoy all of the advantages I do.

If you've met me, you won't think I'm particularly scary. I was going to say I don't bite, but I know that some among you would cheekily ask if I would bite if they wanted me to. So let me revise that: I only bite reluctantly and only when asked to.

Still scared of me?

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