SPECIAL REPORT

Lost opportunity

Many blood victims were hoping for more

SHARON DOYLE DRIEDGER December 8 1997
SPECIAL REPORT

Lost opportunity

Many blood victims were hoping for more

SHARON DOYLE DRIEDGER December 8 1997

Lost opportunity

SPECIAL REPORT

Many blood victims were hoping for more

SHARON DOYLE DRIEDGER

Johanne Decarie tore through Justice Horace Krever's final report on Canada's blood scandal last week, anxiously searching for words that could help make sense of her shattered life. "The government, the Red Cross and everyone in the blood system did my family wrong," says the 38-year-old Ottawa mother. "I wanted to see the facts in black and • white." Decarie's own sad stoV1CL1HI ry-along with those of 200 other victims who testified at were F the inquiry-is documented in the three-volume report: how, for m~ in April, 1986, doctors told her she had received tainted blood in a transfusion after the birth of her theneight-month-old twin daughters. How, despite taking precautions, she became pregnant and, in 1989, her third daughter, Billie Jo, was born with AIDS. How, in 1992, her husband, Bill Decarie, tested positive for HW. "I know I should be thankful I'm alive-a lot of people who have been through this are no longer here," says Decarie. "But I feel very angry." Decarie says that Krever's report-which she fears may not bring the compensation and justice she had been seeking-left her in tears. "I expected a list of the people respon ihb~" sTi~ w1ds "T was lisannointed"

More than 60,000 victims were poisoned by Canada’s contaminated blood supply. Some, like the Decaries, were infected with

HIV. Others contracted hepatitis C, an often fatal virus that destroys the liver. Krever’s long-awaited account of the tragedy—produced after a four-year, $17.5-million inquiry— is getting mixed reviews from survivors. “It is a political whitewash,” argues one Vancouver victim who contracted HIV when she received tainted blood during a routine operation.

“All this money wasted to find out what—how it got in the blood system? I don’t care how I or anybody got the virus.

I want more research—AIDS is the problem.”

But for others, the report brings a long-sought sense of relief. “Victims of the blood supply finally learned why the blood system failed them,” says Jeremy Beaty, president of the Hepatitis C Society of Canada. And while some victims expected Krever to point his finger more specifically at the blood system’s decision-makers, many others are confident that the report contains sufficient information to support legal action. “Unfortunately, it doesn’t help the people who died before us,” says Michael McCarthy, a 38-year-old nurse from London, Ont., who is a hemophiliac infected with hepatitis C through tainted blood. “But it is an honest report. It is the truth. Krever does not mince words.”

Few felt consoled by the words of apology offered by Health Minister Allan Rock and Red Cross officials after the report’s release. “It would have saved a lot of heartache if

they had apologized when it happened,” says Normand Landry, a Moncton baker whose twin sons died of AIDS, 17-year-old Serge in 1992 and Stephane, 19, two years later. The boys, both hemophiliacs, were infected by HIV when they were nine years old. “A lot of victims spent time fighting these institutions to say, ‘You guys were wrong,’ ” Landry adds. “It took a $17-million inquiry for them to admit it.”

Many are also troubled by Rock’s hesitation to compensate all victims without first consulting with the provinces (financial support “without delay” is a key recommendation in Krever’s report). Since 1989, HIV victims have received compensation packages first from the federal government and later from the provinces. But those—like Decarie’s husband and daughter—who were infected indirectly are not eligible. Nor are those infected with hepatitis C.

“When we started talking about compensation, they scoffed,” says Neil Van Düsen, a Sydney, N.S., hemophiliac who contracted hepatitis C from the blood supply. “They said, ‘Go away—you can live your entire life with hepatitis C and never have it affect you.’ ”

In Van Dusen’s case, the demand for compensation is fuelled by a sense that time is running out. In an unfortunate coincidence, the 39-year-old had a serious internal hemorrhage just as Krever produced his report. “Things will never get better for me—it’s like sitting watching a clock tick,” says the father of four children, aged 5 to 14. “I get worse and worse. Doctors tell me that eventually I will get so sick I will require a liver transplant.” Three of Van Dusen’s brothers were also hemophiliacs. One of them died of HIV and the other two are ill with hepatitis C—all the result of receiving tainted blood. “My wife and I say I was lucky. I didn’t get AIDS,” says Van Düsen, a postal worker, who now supports his family on disability benefits. “What do I have to look forward to? Here I was going through life and bang—I would like to know who is responsible, who are the people that played God?”

Many survivors, their families and advocates, including the Hepatitis C Society, are demanding that criminal charges be laid against those responsible. “We can’t let them get away with it,” declares Landry.

“People in authority have to clean up—you can’t leave the people who made these awful decisions in place.” The anger is widespread. “In Japan, Ireland and France, they threw people in jail,” says Van Dusen, noting that other countries have also suffered from tainted blood supplies. “Here, thousands have died from this—needlessly, all for the

cost of saving pennies—and key players get away totally unscathed.”

Some victims say that those who managed the blood system when tainted blood products were being distributed are guilty of nothing less than murder. “If a murder is committed, and two or three are killed, millions are spent to find the killer,” states Landry. “Here, thousands have basically been murdered, but these didn’t use a gun, they used a pen. Is it less of a crime?” Others argue that the health system will never be safe until all of those responsible are removed from their positions of power. “These people who made bad decisions, some may be honest,” says Landry. “Some may be motivated by greed, but a lot of them are still in positions where they are affecting our health care. I don’t trust them. The system has to be made better—we owe it to these people. Otherwise, everybody who died because of this has died for nothing.” □