SPECIAL REPORT

'We have nothing to lose’

JOHN SCHOFIELD May 11 1998
SPECIAL REPORT

'We have nothing to lose’

JOHN SCHOFIELD May 11 1998

'We have nothing to lose’

Every so often, Kim and Neil Van Dusen’s youngest daughter, five-year-old Emileigh, trundles into the dining room of their Sydney, N.S., home and, with her blue eyes downcast, poses a question many youngsters ask: “Daddy, are you going to die?” In this case, the fact that her father has hepatitis C makes the question more wrenching. Neil, a 39-year-old hemophiliac who contracted the potentially fatal disease through blood transfusions,

is already showing signs of cirrhosis, a condition that could eventually lead to liver cancer if he fails to find a transplant organ. He suffers from constant fatigue, headaches, abdominal pain and insomnia. Still, for the sake of Emileigh and the couple’s three other children, he does his best to sound hopeful. “We tell them that maybe somebody somewhere will find a cure or a treatment that will help,” says Neil, who left his job at Canada Post three years ago because of the illness. “But, honestly, how do you answer something like that?” For the thousands of Canadians with hepatitis C, the questions never stop. But the search for answers often breeds an emotional agony that rivals their physical torment. The victims’ public fight for justice from the federal and provincial governments has been equally painful. “What the government is doing to us is unforgivable,” says Dave Smith, 47, a hepatitis C sufferer from Victoria, B.C., who traces his case to an emergency operation he underwent in 1973 following a car accident. “It’s a slap in the face.” The battle erupted into anger last week when Liberal members of Parliament voted the party line on a controversial $1.1-billion federal-provincial compensation

package aimed only at victims infected by tainted blood between 1986 and 1990. About 100 sufferers, many visibly weakened by the disease, marched on Parliament Hill to protest the decision. Opposition from provincial legislatures offered a brief flash of hope, only to be dashed later when most provincial health ministers appeared to fall in line after a cross-country conference call. But the victims, both those covered by the package and those excluded, vowed to continue their crusade. “We have never given up,” said Jeremy Beaty, the 61-year-old president of the Hepatitis C Society of Canada and a former executive with high-tech giant Hewlett-Packard Canada Ltd. “This will never go away as long as the last one of us is alive, and that’s what the government has to contend with.”

Victims of the disease say Ottawa is more concerned with limiting compensation than genuinely helping those in need. Critics

Victims of hepatitis C vow to fight on

argue that the government has wildly inflated its estimate of the number of hepatitis C sufferers to boost the expected cost of the package and turn the public against the victims. At the same time, by restricting the eligibility period, Ottawa is deliberately trying to divide the hepatitis C community, the sufferers charge. Many say the strategy just won’t work. “I’ll just keep on fighting until everyone gets compensation,” says Joey Haché, 15, of Russell, Ont., who contracted the virus in one of the frequent

transfusions he needs to treat a rare blood disease.

Most of the blame, the victims say, rests squarely with Health Minister Allan Rock—once considered a champion of the hepatitis C cause—and Prime Minister Jean Chrétien. Chrétien’s position on the issue stands in sharp contrast to his support for human rights in Cuba, they charge. “The man is a total hypocrite,” says Gayle Lau, a Toronto woman who was given contaminated blood during an operation in 1987. Rock, in turn, has resorted to scare tactics, saying a huge settlement could ruin Canada’s health-care system. Says Lau: “I can’t believe he’d be so cold.”

No matter what shape the compensation ultimately takes, it will never restore the quality of life that hepatitis C victims enjoyed before they got sick. Lau says the disease has robbed her of her dreams and her dignity. At 32, “I should be getting a good, exciting job and doing exciting things,” she says. “But that’s not part of my life anymore.” Unable to work for months at a time, she survives on a meagre provincial disability pension that leaves her with only $330 a month after rent. It has been three years since she bought new clothing. And she suffers from

oppressive fatigue and rheumatoid arthritis—common to hepatitis C victims. “I’m living this horrible hand-to-mouth existence,” she adds. “I don’t know how long I can last like this.” Blessed with a generous public-service disability pension, Van Dusen is less concerned about money. For him, the disease’s heaviest toll has been on his family life. A father who once delighted in playing with his children for hours, he says he now “feels spent” after walking around the block. But Van Dusen says the hardships have only strengthened the resolve of hepatitis C sufferers to win a just settlement. “The government and the Red Cross have already taken away all our dignity and destroyed our lives,” he says. “We have nothing to lose anymore.” So the fight will go on—to the end.

JOHN SCHOFIELD