Seventeen years ago, an inquiry by Justice Horace Krever recommended compensation for the thousands of Canadians who had received blood tainted with HIV and hepatitis C more than a decade prior.
While much has been done to prevent a similar occurrence in the future – the establishment of Canadian Blood Services (CBS) and more detailed blood testing, for example – the former president of Hemophilia Saskatchewan says many continue to live with the fallout from errors made in the past.
Faye Katzman (who also serves on the Canadian Hemophilia Society and is on its HIV/hepatitis C committee) was involved in setting up a commemoration at the Saskatchewan branch of CBS this past week to ensure the public health disaster, and those whose lives were forever changed by it, are not forgotten.
“It’s the worst public health disaster in Canadian history and it was preventable,” Katzman said. “And it decimated the hemophilia community … I think this was one of the casualties of the tainted blood tragedy was that the confidence in the system was undermined.”
According to the Canadian Hemophilia Society, more than 1,100 transfused Canadians were infected with HIV, 700 of whom had hemophilia or other bleeding disorders. Between 700 and 800 of those people have since died. The numbers of those infected with hepatitis C are even more alarming at up to 20,000 people. It isn’t known how many have died, but it’s estimated to be in the thousands, the society reports.
“I think so many decisions that were made in the ’80s had to do with cutting costs and I think what was compromised was safety …,” Katzman said. “As a mother of a child with hemophilia, I’m always encouraged when I hear that Canada has one of the safest blood systems in the world. And so that’s something that I need to believe and I want to believe. And I think that so much has been done.
“But I think that the reason why the commemoration event is so important is because, as George Santayana reminds us, ‘Those who cannot remember the past are condemned to repeat it.’ And what went wrong in the ’80s was a series of decisions, often cavalier decisions, or non-decisions, and all these people who contracted HIV and hep-C from the hemophilia community, from the transfuse community, from those going into the hospital for surgeries, they received blood products that should have been removed from the system and weren’t.”
Katzman said she spent lots of time attending funerals all over the province in the 1990s for those whose tainted blood-caused HIV had developed into fullblown AIDS – memories that are still emotional for her.
Because of the genetic nature of hemophilia, it meant some families had to bury more than one loved one as a direct result of the tainted blood tragedy.
“It was overwhelming …,” Katzman said. “Losing anybody was too much but this was too much to bear.”
While being HIV-positive is no longer the death sentence it once was, and while safeguards have been put in place to prevent a recurrence of this disaster, Katzman said she is split between feeling grateful to live in Canada where hemophilia treatments are advanced and concern for the people she knows who rely on having a safe blood supply to live normal lives.
“I have mixed feelings here and this is exactly the message of the commemoration is to be grateful, to be responsible and to be vigilant,” she said.