Editor's note: The 30th anniversary of World AIDS Day was this past Saturday, Dec. 1. Much has changed in the past 30 years when it comes to our understanding of the virus and the disease, and in the way we treat people who have become infected. It is important to reflect, at this time, at how far we've come, and how far we still need to go.
When I was 12, my Uncle Garry died. I was always told that we had very similar personalities. I was called ‘Little Garry,’ but only really after he died. He was always welcome in my parents’ home, always, but at the same time, I could feel him holding back, and my father trying harder than he normally does. It was a bit fraught, a little tension felt, but no different from any family.
I was told when he died that it was cancer. And it was, to a certain extent. But in the truest terms, he was beaten first by HIV.
My parents didn’t tell me, not to erase Garry, but to protect my brother and me from the fear and stigma that surrounded the virus, the immediate rush to isolate anyone that came into contact with an HIV-positive person. At the time, those with HIV had been resolutely ignored –a death sentence for them.
But then came Freddie Mercury. Later, Magic Johnson showed the world that anyone can get it, that HIV/AIDS wasn’t a ‘gay’ disease. It helped change the public discourse. We began seeing the red ribbons everywhere, charities began, as did discussions about the future and medicine.
And now, we have antiretroviral medications. These allow people with HIV/AIDS to live a long and happy life, and most of all, it makes it so that the diseases is untransmittable. Yes, if you’re viral load – that is, the number of virus cells within a million parts of blood – is below 250 ppm (parts per million) you are considered to have undetectable HIV, and therefore untransmittable HIV.
But this information, this miracle in the medical community, doesn’t get much press. If it did, then we wouldn’t continue to have the stigma that burdens every person with HIV/AIDS to a life of isolation, completely unnecessary and damning to anyone trying to live life with the virus.
“Today HIV is not necessarily the problem — the virus is not actually the problem anymore; it’s the stigma of the virus that’s the problem,” says Eric Cashmore, activism and community outreach lead for Fierté Pride Sudbury, and a person with HIV. “The stigma they face every day is just so overwhelming.”
When someone is on the fringes of society, who doesn’t fit the rigid and patriarchal standards that society has inexplicably put in place, chances are they won’t then turn to the structures that hold them down for help. When you are humiliated simply by using the current social model, when they are designed not for you but for some other ‘perfect’ victim of drugs, sexual violence, or even a person simply trying to live an authentic life, you cannot be faulted for not using them.
And so we have those who are unaware that they have HIV, or they are not receiving health care and support. And we have those that are pushed so far to the edge that drug use has become their only way to cope, and then you have the cause of most new cases of HIV/AIDS in Sudbury.
“HIV in Sudbury is transmitted primarily through drug use,” says Cashmore. “The primary method of HIV in this city is injection drug use, it’s not sexual contact.”
This new 2018 world of AIDS awareness needs to look much different that the years before it, and that begins with two letters, adopted by Fierté Pride Sudbury: U=U.
Undetectable = Untransmittable.
Fierté Sudbury Pride has signed on to the campaign to acknowledge that those living with an undetectable viral load cannot transmit the disease. But it is also interesting to point out that of the 36.9 million people living with the disease around the world (including 1.8 million children, in total roughly 0.8 percent of the world population) approximately 25 per cent are unaware (https://www.avert.org/global-hiv-and-aids-statistics ) that they are living with the disease.
With this in mind, it could be said that you have a higher chance of contracting the virus from someone who doesn’t think they have it, than someone who openly discloses to you that they do. Not only because the person who knows they have it can still have a healthy sex life if undetectable, but because if they do not disclose, they will be charged with aggravated sexual assault.
And while Cashmore refers to his protective methods as a mood killer, he knows he has to protect himself from miseducation as well. In fact, he has a contract and a PowerPoint presentation for all his prospective partners.
Though it may not be an aphrodisiac, Cashmore is steadfast in his discussions so that his partner is comfortable. “My biggest nightmare is to give someone HIV,” he says, with tears in his eyes.
As World AIDS Day 2018 is upon us, it is time to look at HIV and AIDS much differently, and because of this, to look at our treatment of those with the virus and how we support them. For so long every bit of money went to prevention, and rightly so, but now, there is a different challenge, that requires a different solution.
If we remove the stigma, we remove the impediment to support. When a person living with HIV or AIDS can obtain help without judgement, then those behind them will feel the same comfort.
And this is where a new attitude towards HIV and AIDS comes in to play.
“I think in an ideal system we would have an equal amount of resources allocated to prevention as we do support. I think if it was a 50/50 split, we had a really good prevention model, but also really good support models. For me, that would be fantastic,” says Cashmore. “Because then people living with HIV would have somewhere to go to talk to people and to actually get the help they need.”
AIDS and HIV Awareness looks very different now than it did in the 1990s, and before. Right now, we have the chance to change our attitude from the need to isolate to a pattern of welcoming – knowing that Undetectable = Untransmittable. There is no need to fear, only the need to support.
I think of my Uncle Garry often, and much more so now that this December marks the 26th year since his death. But to watch a person of strength, of personal fortitude – like the person Eric Cashmore is – you see that supporting those with HIV/AIDS, giving them what they need to survive and thrive with this disease, will give the world more than the virus could ever take from it.
You can find more information about U = U on the Fierté Sudbury Pride website (http://www.sudburypride.com/uu-campaign/), and by visiting CATIE (Canadian AIDS Treatment Information Exchange.) https://www.catie.ca/en/positiveside/summer-2017/uu
Jenny Lamothe is a freelance writer, proof-reader and editor in Greater Sudbury. Contact her through her website, JennytheWriter.wordpress.com.