World AIDS Day 2013 :: The Shaun Proulx Show

Inspirational video. Thanks for sharing some of your personal insights.

I am glad we have people who are willing to step forward and address the issues that affect our community – certainly being Chair of the AIDS Walk must be a busy role, and no doubt involves many important discussions and decisions, so I commend you for the hard work and dedication you apply within the organization, our community needs more people to offer their time and effort in ways similar to you.

Recently, the AIDS Committee of Toronto Fall/Winter 2013 Newsletter refers to “the lack of knowledge about HIV/AIDS in recent years that has impacted fundraising efforts” was cited as the reason for this year’s AIDS Walk shifting its focus to take a light-hearted approach, a shift the newsletter states inspired you, as chair of the AIDS Walk, to spearhead “an open and honest discussion” which led to divulging your HIV status on CBC Radio this past September, on the morning of the AIDS Walk.

I have listened to the radio interview and I have no doubt it must have taken alot of courage to divulge your status in such a public manor. I recognize the intent of doing the interview, and believe wholeheartedly that you want something good to come from the process of sharing your status, which I’m sure was a guiding factor in your decision. I do have personal reservations about the approach, but more importantly I have concerns that I believe stretch far beyond personal opinion. First, as you have been Chair of the Aids Walk for Life since before your CBC interview, it is incumbent upon those at the helm of these organizations and in positions to speak publically to ensure that the messages of the organization are formulated and delivered accurately, portraying factual realities and providing immense clarity on issues known to be misunderstood or result in conflicting information.

As you have indicated, you wanted to utilize your sharing of your HIV status as a means to draw attention to the issues of HIV stigmas. I agree that it is an important story to be told, people do need to understand how stigmas have personally affected you and/or others you know in order to highlight the degree to which these problem still exist in 2013. You spoke about the education that is needed with regards to HIV, but as I listened attentively, I was disappointed to hear no mention of what it means to be “undetectable”, and the context this term has as a widely-accepted science which leading HIV specialists argue has made AIDS a drastically different and reduced issue in terms of the number of people who are affected in Canada today. Another important point that I didn’t hear mentioned was that almost all those in Canada who experience severe complications from AIDS are among people who did not know they were positive for considerable lengths of time, letting the virus reach a point that in almost every case could have been managed in relatively easy manners and prevented serious damage to the body. It is now becoming rare for a Canadian to die from “AIDS” and even more rare for someone to die from AIDS when modern medicine simply couldn’t treat them.

But the truth is that the stigma that exists with the term AIDS conjures up horrifying images and sentiments, engrained in the memories of many who saw the traumatizing and astounding morbidity and fright that plagued the globe a couple of decades ago. Some 20 years later, fewer than 100 people a year die from actual AIDS-related illnesses in Canada, which estimates suggest that 80% of could have been prevented if conventional medications had been started and routine testing done as all physicians currently recommend. To put this in perspective, it is also a fact that in Canada more people die from falling off buildings than die of AIDS-related illnesses, so missing the opportunity to share this information with the listeners on CBC and explain the difference between HIV and AIDS in 2013 terms, came as a surprise to me. These breakthroughs, now over 5 years old, have been some of the most significant since the onset of the global virus, and now mean that people with properly managed HIV will likely live just as long as HIV negative people, all the while unable to transmit the virus to anyone else, potentially even from unprotected sex as the science suggests, with medication essentially disabling or putting the virus in a permanent “pause” state.

It is my strong opinion that not sharing this important information results in a conversation that further cements the fear and “partial information” that many people have with regards to HIV and AIDS which for the majority of people is simply an outdated and incorrect perception. After watching your video today, I wonder if someone who is uneducated on HIV and AIDS might now understand many of the negative impacts HIV and AIDS have on the daily lives of those who have the virus, but in doing so ultimately make it more difficult to fight the stigma if the remaining impression is still of a death sentence or a lifetime of isolation so the “rest of the world can stay safe.” I would go so far as to argue that given Canadians widely uneducated perception of AIDS is one largely associated with the highly publicized and tragic imagery of death and desperation that dominated news headlines throughout the 80’s and early 90’s, the ScotiaBank Walk for Life, as it is currently branded, exists to raise large amounts of money and attention, and draw in extensive resources from the generosity of Canadians for an issue that, based on the reality of one word in the branding, is akin to another major bank launching a campaign to the same scale to address the serious challenges of Syphilis-related illnesses and deaths in Canada, an issue that once terrified people until it became widely understood that modern medication can now treat Syphilis if it is detected early enough. It seems to me that a prudent and rather obvious choice that it is incumbent upon ACT and PWA to make is to do a branding tweak that updates your names and acronyms with the appropriate letter and word to more accurately reflect the current situation in Canada.

I’d like to raise one other point, which I’ll let you draw your own conclusion on. When referring to your unprotected sex practices, you stated, “because it wasn’t just once and I don’t know who infected me – whatever the scenario was, I was only being human.” As I looed up the definition of “human”, the definition of “human nature” seems really what you must be referring to. According to Wikipedia, the defenition is:

“ways of thinking, feeling and acting, that humans tend to have naturally, independently of the influence of culture.”

It seemed logical in reading that definition that I should also ensure as well a full understanding of the word “naturally” as it applies in this context, so I looked that up as well. The definition is:

“things which are natural, or subject to the normal working of “laws of nature”, or “the essential properties and causes of those things to be what they naturally are, or in other words the laws of nature themselves.”

I’m not sure how you feel “being human” is an accurate rationale, but I would welcome your response to those definitions I have just provided. Don’t mistake this for me assigning any blame here, which I believe is what you are trying to accomplish by removing blame – and I think that is a noble point to make because nobody deserves an illness, and certainly whatever the argument may be regarding blame, the resulting illness is not an acceptable “punishment” to us as human beings, so I neither assign nor take away blame here, I think it is an irrelevant point. But I do wonder whether chalking this up to “being human” is really an accurate statement? Please clarify.

Lastly, the video you did Shaun is definitely a good way to raise awareness of how the virus has affected those who have/had it. I urge you to begin including the real data and stories from serodiscordant couples (one person in a relationship is positive, the other is negative) to provide a broader perspective on what the potential for transmission from an HIV positive person who is undetectable is, in real terms, and what that means for an HIV negative person who is uncertain or unclear. As for your campaign to create an open conversation, I applaud your efforts and have no doubt you will have an uplifting impact. I hope you will agree there is an opportunity to ensure your efforts are not thwarted by unintentionally perpetuating the very problems you are working to resolve by not providing the full context. In the same spirit as you approached this sensitive topic, please know that my intent behind these thoughts is one simply meant to add to the good work you are doing and have done. Thank you for all of your hard work.

It’s discussions like this that bring unity and understanding to our world. Well done Shaun!