Cet article a été initialement publié dans le magazine Macleans (26/06/1995)
By Vic Parsons
They had every reason, and certainly every right, to expect only the best. For the one in 5,000 Canadian males born with the genetic blood coagulation disorder called hemophilia, a breakthrough in the processing techniques of donated blood products in 1981 was more than a simple triumph of medical technology. Compact vials of dried and supposedly purified concentrates to clot the blood offered a reprieve from excruciating pain and personal liberation from a life of constant vigilance and the possibility of early death. But as Bad Blood meticulously chronicles, that freedom was short-lived. In a horrifying tumble of events, batches of contaminated blood supplies in the early 1980s infected as many as 1,000 Canadian hemophiliacs with the deadly AIDS virus. "The tragic irony of this infection was that the blood transfused into the veins of those unfortunate patients was intended to give life," writes author Vic Parsons. "Instead, it has brought premature death to hundreds of Canadians."
This is a story of devastating impact. For one thing, the trail of innocent victims does not end with hemophiliacs - almost all men because the condition is rarely passed to daughters. Unaware of their own contamination, many of those men passed on HIV (the virus that is believed to cause AIDS), as well as infectious hepatitis C, to their sexual partners. During operations between 1978 and 1985, hundreds of other Canadians - many of them impossible to track down - were given transfusions from blood lots carrying the same impurities.
Like tap water, the safety of the blood delivery system was never in question at the time. And the very notion of blood - the other essential liquid of life - as a tainted, deadly enemy is difficult to accept. "Blood cleanses the body of unwanted corruption, carries oxygen to the brain and nourishment to the cells, and fights off intruders," writes Parsons. "It flows within all higher animals like a vestige of our brine-soaked creation."
Parsons argues that the tragedy might have been contained, if not avoided, earlier than it was. That much is evident in testimony spilling each week from the federal inquiry into Canada's blood supply, a multimillion-dollar exercise led by Justice Horace Krever of Ontario's Court of Appeal. A veteran Ottawa journalist, Parsons builds a dry but unflinching case against a top-heavy blood bureaucracy - at its pinnacle, the Canadian Red Cross Society and the federal regulatory Bureau of Biologics - that operated a system riddled with flaws and false economies.
Safety was second to budget trimming, Parsons contends. Turf wars buried scientific data that alerted blood agencies to potential dangers. Hemophiliacs, who became the miners' canaries of the blood system, were themselves self-destructively passive. At every turn, writes Parsons, "eyes were shut to mounting evidence, until it was too late."
What rescues Bad Blood from a numbing blur of dates and statistics is the poignancy - and compelling courage - of those whose lives are threatened most. Few of the personal stories of infected hemophiliacs and their families, scattered throughout the book, are as brutally frank as the chapter involving Parsons's son, David. Now 24 and living in Nicaragua, David, a hemophiliac, was 15 when he first learned that he was HIV-positive in 1986.
The Parsons family, including David's mother, Lorraine Calderwood-Parsons, and his younger sisters, Jennifer and Jill, struggled to reconcile themselves to emotions that ranged from "fury to bottomless anguish to abject helplessness to a sense of betrayal to sickening fear." For a brief period, David found refuge in drug and alcohol abuse. Eventually, he discovered continuing comfort in volunteer work. Still, as he told his father, "it's a drag to be angry all the time."
The stories of the Parsons and of other families in the book are both painful and uplifting to read. Two of the three sons of Toronto AIDS activist Denise Orieux are HIV-positive hemophiliacs. "This disease has so overwhelming an effect because my sons are going to die," Orieux tells Parsons. "And at the same time, it's like something has been lifted. Every moment is precious. I have no time to waste on bullshit."
Ed Kubin, a former financial controller who lives outside Winnipeg, lost his job and his marriage after testing HIV-positive. Kubin's younger brother Barry, also a hemophiliac, died of AIDS in 1991; their mother died the following year of what Kubin says was a broken heart. Writes Parsons: "When he becomes really ill with AIDS, Kubin will get into his truck, say goodbye to his children, now age 14 to 21, and head to the mountains where he finds joy, serenity and peace." In his pocket, Kubin carries a small object. Showing it to the stunned Parsons, whose son he had befriended, Kubin explains: "When I have no money and I can't do anything, that's the bullet that will end my life."
Maclean's June 26, 1995