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The first sufferers of HIV and AIDS stood out: Many were frail with gaunt cheeks and wasted muscles, as if to publicly brand them with the disease.
Then there were the funerals. There were lots of funerals.
Bob Blouin remembers attending six funerals over a two-week period in the early 1990s; he stopped counting the number of friends who died from AIDS when the tally reached 85.
“I lived through the time when food trays were left outside hospital-room doors,” Mr. Blouin said in an interview. “I was at the [hospital] bedsides of people who were shackled to the bed because they had dementia and they were swimming in their own excrement.”
Tim McCaskell at home in Toronto. (Tibor Kolley/The Globe and Mail)
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During the early- to mid-1980s, there was no treatment for HIV and AIDS sufferers, which is why some of those with the disease manifested its symptoms — such as wasting — so quickly.
“Those middle years were terrible, you just watched people die,” remembered Dr. Philip Berger, chief of the department of family and community medicine at St. Michael's Hospital in Toronto.
“The only thing a doctor could do was to be kind and available and treat with what little medications were effective.”
At the time, being diagnosed with HIV was considered a death sentence. No one expected that someone would survive for a decade or more. Mr. Blouin became one of many exceptions. A former accountant, he tested positive for the disease in 1988, on his 41st birthday. He is, by any standards, a long-term survivor of the disease.
“I never thought I'd live to be 50,” said the 59-year-old. “I've been incredibly lucky.”
Not only has Mr. Blouin had purplish Karposi's sarcoma spots burned from the roof of his mouth, he has lived so long with HIV that he literally wore out a pacemaker. He is now on his second.
The pacemaker, he said, was required after earlier treatments for HIV led to cardiomyopathy, a disease in which the heart muscle becomes inflamed.
While those diagnosed today are guaranteed a longer life, thanks to highly active anti-retroviral therapy, which has been available for about a decade, that wasn't true of the first wave of people who acquired the infectious disease.
“I thought I was going to be dead in six months,” Mr. Blouin remembered. “... It was pretty much a death sentence then.”
Another long-term survivor, Tim McCaskell, a 55-year-old from Toronto, remembers reading the American newspapers in the mid-1980s and learning of this mysterious disease. When he read about the swollen glands and diarrhea experienced by its sufferers, he wondered if he had it.
At the time, “it was thought to be an autoimmune disease,” said Mr. McCaskell, who used to educate students about sexual harassment, racism and homophobia for the Toronto District School Board. “Nobody knew whether it was a virus or too much sex and rock-and-roll.”
Indeed, it wasn't until 1986, when Mr. McCaskell's blood was tested as part of a study into the epidemiology of the disease, that he learned that he was HIV-positive.
For the first few years of his diagnosis, he used complementary and alternative therapies, concerned about the side effects of the early antiretroviral therapy.
But by 1992, when Mr. McCaskell's CD4 count fell to dangerously low levels, he went on antiretroviral therapy. A low CD4 count results in a weakened immune system and leaves the body at risk for different types of infections.
“Of the HIV-positive people, I'm one of the few survivors. I'm lucky, I guess,” said Mr. McCaskell, who is currently on long-term disability. “... There's a whole cohort of friends who should be here with me. I've led a charmed life. Here, the antiviral medications are holding people like me pretty stable.”
Indeed, when the discovery of a drug cocktail called HAART came along in the mid-1990s, the disease that was once a death sentence was transformed into a chronic, manageable condition. That therapy can reduce the amount of virus in a patient's bloodstream.
Since then, patients who are HIV-positive are not being prepared for death, but for life.
Mark Wainberg, director of the McGill AIDS Centre in Montreal and co-host of the upcoming conference, said the new therapies have transformed the disease.
“It's now a chronic illness,” Dr. Wainberg said in a telephone interview from Montreal. “For most people in the field, the analogies are diabetes or taking pills for high blood pressure.”
But, as Dr. Wainberg points out, “being diabetic is not a piece of cake.”
Indeed, for Mr. Blouin, living with HIV means taking 50-odd pills a day, many of those capsules used to combat the side effects of his antiretroviral therapy.
However, those diagnosed with HIV today live a much different life from Mr. Blouin. Most don't know anyone who has died from the disease. And it is assumed those who have the disease will live a long life.
