Getting to zero
December marked thirty years since the first case of HIV/AIDS was discovered. Tens of millions from all over the world have since been affected by the virus, leading to the United Nation’s vision for zero AIDS-related deaths and zero new infections. To get behind the numbers, stigmas and progress in research, The Cord spoke to three local individuals living with HIV/AIDS
“In my elementary school years, there was sex education but we basically talked about – the primary thing we talked about – was what a woman could do to avoid getting pregnant,” recalled John Davie, a Kitchener resident.
Davie, who was diagnosed with HIV in 1993, and knowing very little about the virus at the time, believes that education plays a major role in preventing new infections. He is one of several individuals that, after seeking support with the AIDS Committee of Cambridge, Kitchener, Waterloo and Area (ACCKWA), began volunteering to speak publicly about living with HIV and AIDS.
“If you have a better understanding of the stuff from the word ‘go’, I just think people will make wiser decisions for themselves,” he said.
From the age of ten, Davie trained as a dancer eventually reaching a career in professional ballet. After seven years of working for four companies, performing in cities across Canada, he decided to retire finding himself burnt out.
“That was probably one of the results that I chose to retire because not realizing the underlying problem was that … my body was starting to get tired from the virus,” he said.
Davie’s partner was away, driving in the U.S. at the time the doctor called, making the situation even more difficult to take in. “It was very awkward. You felt alone, frightened because it was something that was spoken about and the only thing you knew about it, it was a plague,” he said.
Even when the diagnosis is not as unexpected, the emotional impact remains.
Guy Cluney, now nearly 60, struggled with drugs and the law in his youth and found himself in prison before the age of 18.
“When I came back home, I had straightened out,” Cluney explained. But after an economic bust in Calgary, Cluney found himself spiralling into a dangerous lifestyle.
“I went through another period of hanging out with prostitutes and stuff like that at which point I started living with one and we fell in love and we caught AIDS together, or she passed AIDS to me or something. It’s hard to say,” he said, acknowledging that the uncertainty of when he contracted the virus was also due to the fact he was not diagnosed until much later while in jail again in the late 1980s.
“I knew about [AIDS] and I knew I shouldn’t be doing what I was doing … but the perception of this was a gay disease,” said Cluney, reflecting the negative effects of the stigmas surrounding HIV/AIDS and the attitude of ‘this couldn’t happen to me.’
The combination of knowing little about the disease and not realizing the potential of contracting it can prove to be a severe health risk.
“I was in quarantine for about two weeks because I got really sick and I didn’t know why,” explained Mary, who chose not to disclose her last name. She went on to recall that the doctor told her one evening in April 1996 that, based on her tests, she either had cancer or HIV. “I’m looking at myself and think well jeez, it can’t be HIV, I’m a married woman.”
“All night long I prayed for cancer and the next morning my doctor came in and my family doctor and another doctor and a psychologist basically broke the news that I had full-blown AIDS,” she said of discovering she contracted the virus from her now ex-husband. Her health on the line, Mary noted that had it not been for this bout of pneumonia that put her in the hospital, she would not have discovered she had AIDS until a later illness struck.
“Once you were diagnosed, you were diagnosed with a death sentence,” said Davie about discovering he was HIV-positive in 1993. Nearly 20 years later, he along with countless other know this is no longer the case.
The life expectancy of someone diagnosed with HIV/AIDS can be ten years less than the average person in developed countries such as Canada, or as drastic as cutting their life expectancy in half in areas such as Sub-Saharan Africa, influenced largely on access to medication and health care, and quality of life , according to Dana Christiaen, the women’s community development coordinator for the AIDS Committee of Cambridge, Kitchener, Waterloo and Area (ACCKWA).
“In most cases people are on a combination of antiretroviral drugs [….] You really have to work out with your doctor what they call ‘the cocktail’ that works best for you,” explained Christiaen. Although these drugs are costly, adding up to on average $1,400 per month, they are covered by government health insurance across Canada.
While the drugs are effective, they have long-term consequences.
“I’ve got nausea, diarrhea, vertigo every day when I get up; I’m wasting a bunch,” said Cluney, from being on medication for 20 years. Yet even with these struggles, he considers himself blessed.
“Men who are on treatment for years, they’ve mutated to superviruses and they have no drugs for them,” he explained.
Similarly, Mary struggled to find drugs that work and is currently on experimental treatment because the virus was so advanced when it was discovered. “They can’t tell me what the side-effects are; I’m the one that tells them what the side-effects are,” she said. “I had to sign my life away 16 years ago just to take these trials and stay alive.”
Maintaining a good quality of life after diagnosis requires not only maintaining good health but also overcoming the negative perception surrounding HIV/AIDS.
“I think the biggest problem is that HIV has fallen back from public view,” said Mary who admitted to being naïve about the disease when she was first diagnosed. “It’s not just prostitutes and drug dealers who get HIV and AIDS. Married people get it too, children get it.”
“A lot of people, especially parents, think it’s not happening here, so why push the sex talk, why push condoms? But what they don’t realize is that it is happening here,” she continued, explaining why she got involved with ACCKWA to promote broader education. Although publically speaking about the disease has hurt about half of her friendships, she finds the work worthwhile.
All too familiar with stigma, Davie was bullied in his youth for being a dancer. Now with HIV, he sees the same unjustified discrimination again. “Some of the staff in the hospitals were not good, and you run into that all the time too,” he said regarding negative attitudes he’s felt due to his sexual orientation.
“I wouldn’t say ‘why me’ because we’re all susceptible to anything in life. Obviously I could have made better choices. In the early years I had unprotected sex but then again, that’s just from a lack of education.”
Having recently presented his story to a group of 400 teens at a Kitchener high school, Davie was reminded of the importance of education.
“I was astounded by how … knowledgeable [the students] were, to what they got out of hearing me speak about [HIV] as opposed to only hearing about it through papers,” he said. “It’s definitely not talked about enough.”