shift: what the tainted blood scandal didn't teach us
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“i doubt you have any interest beyond publishing articles but, for the record, there are thousands (perhaps multiples) of people that rely on blood derivatives, i am one.”
this from “r” who was responding to a story healthing published on the ban on blood donation from gay and bisexual men.
“i have stood against such inclusion for six decades (yes, that’s how long bisexuals, homosexuals, etc) have been pursuing this objective-cum-right,” ‘r’ continued, connecting the right of gay and bisexual men to donate blood with certain infection of others who rely on blood products for survival. ridiculous.
but it was what he wrote next that really made me catch my breath.
“now, i know you (or many you’s) could give a tinkers damn whether i suffer, live or die with a f******’s disease because i self-inject blood derivatives to stay alive and healthy, but i sure care.”
exhale.
the comment reminded me of a time decades ago, when my little brother — he was maybe 11, i was 14 — told me he had overheard someone use that same f-word to describe people who had hiv — he didn’t know what it meant. i think i stumbled over some vague explanation before changing the subject, while hoping he never heard what a neighbour had told my mom — that people with hiv got it from having sex with monkeys.
my brother was a hemophiliac who relied on blood products to stay alive. along with 2,000 other canadians, he contracted hiv as a result of receiving tainted blood. he also contracted hepatitis c which would eventually cause liver cancer and kill him 30 years later.
my father was the president of the canadian hemophilia society at the time. he had stopped counting the boys and men and their partners who had received similar devastating news. in one family, two out of three sons were infected.
one night, my dad and i were watching the news — it was a special report about what had become known as the tainted blood scandal. we were sitting shoulder to shoulder in the middle of a long burgundy couch that had firm cushions and armrests made of smooth, shiny wood. he smelled of soap and the dry look hairspray he used to keep the fancy flip in his shiny grey hair in place. the scent was comforting as we listened to the reporter rhyme off the number of canadians who had so far been infected with contaminated blood. i could feel his body stiffen.
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“i have seen enough,” he said, as he stood up and turned the television off. his voice shook with rage. “i don’t want to see anymore.”
in the days and months that came later, my parents probably went to more than fifty funerals and made countless visits to hemophiliacs who were sick in hospital, all the while being heavily involved in the legal action victims were taking against the canadian red cross. at the same time, they tried to hide their fear for my brother — not only around his health (doctors had told them that he wouldn’t likely live more than a couple of years), but also because of the stigma and hate that had suddenly become part of his daily life.
as my brother tried desperately just to be a regular kid — he liked to dance and would drag a giant piece of cardboard onto the school bus so he and his friends could breakdance in the playground — the way the world saw him had changed forever.
even though healthcare experts had figured out how hiv was spread — through blood — my parents’ dinner parties got smaller, with more declines than acceptances. my brother’s friend group also shrunk as parents warned their kids not get too close. some alluded to drug addiction and types of sexual behaviour that would turn your stomach — he was just ten years old.
still, he would invite them to his birthday celebrations, and no one would show. sometimes, parents would leave gifts on our front porch. eventually, he stopped trying. my parents stopped trying too. even at the dentist’s office, a place full of healthcare professionals, where you would think one would be relatively safe from stigma, the hygienist would show up covered from head to toe in hazmat gear — just to introduce herself.
when the legal proceedings against the canadian red cross ended, compensation was won, but it would never be enough to replace all the lives lost and soothe the painful betrayal of the failure of a system that so many relied upon for survival. as the years passed, many mourned their loved ones, and some became quiet about their connection to the scandal — exhausted by the hate and isolation. the difficult job began for survivors to pick up the shattered pieces of their lives and move forward. there was something about watching so much death that made time alive seem painfully uncertain.
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my brother lived way longer than they said he would, and went on to have a successful career and become a great dad to two amazing kids. but five years ago, doctors confirmed that his liver had finally succumbed to the damage of hepatitis c — stage 4 liver cancer was the diagnosis. thankfully, gruelling treatment helped him reach remission, until the cancer staged a relentless return earlier this year. he died in hospital.
at his funeral this summer, some of those kids who didn’t come his birthday parties came to pay their respects and share funny stories and talk about what a great guy he was. all of them were surprised to hear about the adversity he faced as someone living with hiv — one his best friends from grade eight told me that he could remember the day that something changed in my brother.
“he just stopped playing with us,” he said, his voice wavering. “i wish i would have known.”
so, yes, ‘r,’ i actually do give a “tinkers damn” about whether you “suffer, live or die” because i have seen the devastation of shoddy safety protocols and inadequate screening and testing — i hope to never see it again.
but know that your level of safety and security has not a lot to do with who donates blood — of which we need a lot of these days, by the way. instead, it’s solid oversight, strict testing and robust, error-free screening that’s going to ensure your wellbeing, and that of the thousands of canadians who rely on our blood system to live. this has been the commitment of canadian blood services since it took over from the canadian red cross in 1998, and so far, so good.
we have learned a lot since then, not only about blood-borne diseases, but we also now know how to cure hepatitis c, and hiv has become a disease that many can live with, thanks to the evolution of treatments. but your words remind me of how far we still have to go.
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because despite all that the tainted blood scandal taught us — and after all the suffering — there is still such hateful stigma around hiv and the communities that have been most affected by it.
and that, ‘r’, besides not having my little brother at the table this christmas, might just be the saddest thing of all.
note: ‘r’ has since sent a note of apology.
this story originally appeared in the healthing weekender. subscribe here.
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