Rick Waines is no stranger to pain. Born with hemophilia A, Waines is prone to internal bleeding, most prominently in his ankles, which sometimes swell so profusely that even pressure from a blanket at nighttime causes so much pain he can’t sleep.
Hemophilia A is a genetic disorder where factor VIII, a clotting protein, is either missing or defective. People living with this condition can bleed — both internally and externally— longer than others because their body doesn’t clot properly. Throughout his entire life, Waines has relied on blood products to replace the missing factor VIII protein in his body to control bleeds.
In the late 70s, Waines received some bad news—he had hepatitis C. He was told it probably wouldn’t cause him any problems in the long run, so he carried on without giving the virus much thought. But in 1987 came a diagnosis that would have a profound impact on his life: Waines tested positive for the human immunodeficiency virus (HIV).
Although he didn’t know it at the time, Waines was one of nearly 2,000 Canadians who contracted HIV/AIDS through tainted blood. Roughly 30,000 people also tested positive for hepatitis C in what is now known as the tainted blood scandal, the worst preventable public health disaster in Canadian history.
HIV/AIDS was first reported in Canada in 1982, and evidence quickly pointed to it being transmissible by blood. Despite this, it took several years for the Canadian Red Cross — which administered the nation’s blood donation system at the time — to implement donor screening and testing. The Red Cross infamously claimed that the risk of blood product recipients contracting HIV/AIDS was one in one million.
By 1984, this had been largely disproven. The HIV/AIDS epidemic was in full force and there were staggering infection rates in high-risk groups: three-quarters of hemophiliacs, nearly 90 per cent of intravenous drug users, and two-thirds of sexually active gay men had the virus. At this time, researchers also confirmed heat treatment could kill the virus, but this was a costly process, so the Red Cross continued to disseminate its contaminated blood supply.
Failure to stop the spread of hepatitis C happened in a similar fashion; screening was inadequate, and implementation of testing was delayed. Contract tracing was also slow, which meant people infected with HIV/AIDS and/or hepatitis weren’t notified promptly, and they unknowingly spread it to others.
In 1993, a public investigation was led by Justice Horace Krever, known as the Krever Inquiry, and the final report tabled in 1997 recommended changes to all aspects of the blood system in Canada. The Red Cross was stripped of its role in the blood donation system and in 1998 Canadian Blood Services (CBS) and Héma-Québec were established.
In the early days, CBS and Héma-Québec were tasked with a monumental challenge: restoring the faith of Canadians in the blood system. Héma-Québec spokesperson Laurent Paul Ménard says the organization started an annual survey in 1998 and found only 36 per cent of people had confidence in the blood system. Today, that figure has jumped to 92 per cent.
“The answer to getting trust back was quite simple; we had to do it through time and by practicing what we preached,” says Ménard.
Over the past 23 years, many changes have made donating and receiving blood in Canada safe, including enhanced screening and testing procedures. According to the CBS website, all donations are now tested for syphilis, hepatitis B and C, HIV and West Nile virus. Both CBS and Héma-Québec have been quick to jump on emerging pathogens like the Zika virus and implement new testing and screening whenever necessary. According to CBS, there has not been a single recorded instance of blood-borne infection from either hepatitis C or HIV since 1998.
And while positive changes have been made, many groups are actively involved in making sure the nation’s blood supply remains as safe as possible.
“One thing we said after the tainted blood scandal was never again,” says David Page, national director of health policy at the Canadian Hemophilia Society. “Governments don’t have a collective memory, so we pushed for and obtained seats on every blood safety committee that was set up in the wake of the Krever Inquiry, whether that was CBS board of directors, Héma-Québec board of directors or advisory committees.”
For 55-year-old Rick Waines, life changed drastically after he was diagnosed with HIV. He watched his friends in the hemophilia community die one by one, describing it as, “there were the people who died last week, the people who were dying this week, and the ones who would die next week.” Work didn’t seem to have much meaning anymore, so he quit his job as a photographer and has spent his life working with the HIV/AIDS community.
In 1996, highly active antiretroviral therapy became available in Canada, improving and prolonging the lives of those with HIV/AIDS. But Waines says surviving comes with mixed emotions.
“We were all stoked that at least a lot of the suffering was waning, but my uncle died and all of my pals with hemophilia died, save a handful,” says Waines. “The gay men in my life had lost everyone they relied on for care and support and love. Let’s just say it was no victory parade. We were all certainly grateful to have made it, but there was just a catastrophic amount of loss.”
Waines is currently working on a play based on interviews from people who lived through the HIV/AIDS epidemic, which is set to hit the stage on December 1, 2022, World AIDS Day. When asked what he wants people to understand about the tainted blood scandal, Waines takes a minute before responding.
“I’m hesitant to tease apart the blood scandal from the story of HIV,” he says. “I think that if I wanted people to remember anything it’s that there was this thing called HIV and it devastated a bunch of communities. Blood transfused folks paid a very steep price, but no steeper than gay men.”
Healthing reached out to Canadian Blood Services several times and was told no spokesperson could be made available.
Vanessa Hrvatin is a Vancouver-based freelance writer. She can be reached here.
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