As many of you are well aware, AIDS Awareness week (AAW) is fast approaching. For those of you who don’t know, AIDS Awareness Week is celebrated each year in the lead up to World AIDS Day, December 1st. During this time, we commemorate those we have lost, recognize the resilience of those living with HIV, appreciate what we have achieved, and consider what work still needs to be done globally, nationally, and locally.
As we gear up for AAW, I get a lot of opportunity to reflect on the past, present, and future of HIV. While I know we have come a long way since AIDS first made its mark on the map in the early 80’s, I find myself spending the most amount of time still considering what needs to done. While we have made huge strides, some days it feels like it is still 1985. This certainly seems to be the theme that has come up over and over again in the lead to AAW.
Recently at our agency, myself and some of our clients/participants/peer workers have been working with the college radio to produce a documentary for AIDS Awareness Week. It may as well be called, “Didn’t we leave the 80s years ago?” as the common thread between most of the stories was that the general public seems to know as much about HIV as they did in the 80s.
There was a similar ethos among the people I talked to at the Ontario HIV Treatment Network Research Conference this year. Sure, people who have access to adequate health care and can adhere to proper medications are no longer dying. Sure, a ton of research has been done and we have made huge leaps and bounds in our understanding of HIV on many fronts. But the question I am left with is: Why does so little of this translate to the general public?
The stories in the news tend to either falsely inform the public that we have a cure and/or vaccine for HIV, or that everyone with HIV is actively trying to infect “innocent victims”. This of course is interesting because, why are people being charged with infecting others with something that is supposedly curable and you can just take a pill for? I know I’m preaching to the frustrated choir, but in light of AAW, I’d like to take a moment to acknowledge the key themes I hear from our clients and other people living with HIV or in the field, as a reminder that we still have a long way to go
Stigma and education
As usual, stigma plays a huge role. Not much of a surprise there that people who are living with HIV experience stigma, but sometimes we forget what an intimate relationship stigma can have with so many aspects of our lives. The common frustrations of people living with HIV both stem from stigma, but contribute to it at the same time.
People living with HIV are so tired of having to educate people about HIV. Why, why, why do people not know about HIV is something I hear regularly? I’m not even talking about viral load and CD4 counts and treatment as prevention, although I know that explaining this gets tiring for many people living with HIV. I’m talking about an alarming amount of the general public still believing you can contract HIV from mosquitoes or sharing utensils with people living with HIV or kissing, etc. I am talking about things that an adult who has any level of primary school education should know, not to mention adults who have had sex. And they are not entirely to blame. Our education system is doing us a great disservice if we have full grown adults that are still afraid to use the same toilet as someone living with HIV.
Knowing your status
Another frustration that has surfaced is with the lack of people who know their status. This has come up a couple of times in the past few weeks. The general thought being that if you are sexually active, particularly if you are engaging in unprotected sex, you have a responsibility to get tested for HIV. While it is certainly understood why people might be afraid to know their status, not knowing yours and telling people you are negative, and potentially infecting others, is frustrating for people who are taking precautions to protect others but also taking the brunt of the stigma.
You also have a responsibility to protect yourself in sexual encounters. Despite what the law says, all parties involved in sexual encounters have a responsibility to protect themselves and others against STIs. The message has been pretty clear: People living with HIV who know their status and are on medications, generally have a much lower risk of transmission than someone who does not know their status. Although again, very little of the general population knows this. Discriminating against people living with HIV makes no sense, since two seconds before they told you their HIV status, you were willing to have unprotected sex with them, now you’re not? Not everyone knows they are living with HIV. Something like 25% of people living with HIV in Ontario, don’t know it. Therefore, don’t count on someone to tell you they have HIV. Take personal responsibility in protecting yourself and think twice before reporting someone for not disclosing.
There are a myriad of reasons why someone may not be able to disclose. Maybe ask yourself why you had unprotected sex in the first place. I heard today that if you look at a text while driving and cause an accident, the person who sent you the text can be held liable. This is based on the same values that inform our criminalization laws- no one is to be held responsible for their own actions in this society. Remember: you’re the one that decided to take the risk by driving the car. You’re the one who decides to put your seat belt on for protection. And you’re the one who decided to check the text. But somehow someone else is liable for the accident you caused?
While this seems to have turned into a rant, I can only imagine the frustration of people who have to deal with this stigma and ignorance day in and day out. It’s infuriating and exhausting.
That’s not to say that we don’t have things to look forward to in the future. I hope that sex education is becoming more inclusive for LGBTQ populations and that HIV education is moving from a five minute piece in sex ed, to numerous full length discussions over time. Also, as more research begins to support treatment as prevention, perhaps if it can make its way to the general public in the place of sensationalist criminalization pieces, people will begin to understand how low HIV transmission risk can be, which will hopefully in turn help reduce fear and stigma.
So, as we approach AAW, we should continue to reflect on how far we have come, how far we have left to go, and what promise the future holds. And if you are not living with HIV or work alongside it, but want to do something in honour AAW this year (besides support some of our amazing events http://www.aidsguelph.org/aids-awareness-week-2013) you can begin by taking steps to help reduce HIV stigma by educating yourself, getting tested regularly, and taking personal responsibility in your own sexual health.