Watching the ‘Unspeakable’ TV Series About Tainted Blood Tragedy

I recently watched the eight-episode Canadian drama miniseries “Unspeakable,” which was inspired by real events and first televised a few years ago. The series is the creation and passion of Robert C. Cooper, a writer and producer best known for his work on the television series “Stargate SG-1,” “Stargate: Atlantis,” and “Stargate Universe.” He has hemophilia and is one of the thousands of people who contracted hepatitis from tainted blood products in the 1980s.

“Unspeakable” chronicles the emergence of HIV/AIDS and hepatitis throughout Canada during the early 1980s and ’90s and the tragedy that resulted after thousands with bleeding disorders were infected by blood tainted with HIV and hepatitis. The tainted blood tragedy is described by many as one of the worst public health disasters that Canada has ever faced.

According to the Canadian Hemophilia Society:

“More than 1,100 transfused Canadians were infected by HIV, of whom 700 had hemophilia and other bleeding disorders, and 400 were transfusion recipients for other reasons. … Between 700 and 800 of these people have passed away. A much larger number of people — up to 20,000 — were infected with the hepatitis C virus (HCV) through blood and blood products before testing was introduced in 1990. The number of people who have died from hepatitis C related liver disease caused by tainted blood is not known but could be in the thousands, and continues to rise.”

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Painful memories

The TV series brought back memories I’d long ago tried to suppress. I remember the days of walking into my hemophilia treatment center (HTC) at Children’s Hospital (now called Children’s Wisconsin) in Milwaukee and being unable to stand the palpable feeling of sadness in the air. I remember when I was about 20, I received a letter from my HTC telling me I was at high risk for HIV and would require testing every six months. I also recall the awkward conversation with my hematologist that followed. From that point forward, I had a massive distrust of the medical system and blood products — a distrust I still harbor.

Through my work in the 1990s with Camp Heartland, the largest U.S. camping program for children affected by HIV/AIDS, I met several children with hemophilia and AIDS who tragically lost their lives.

I helped raise two children I met at the camp. One was infected with HIV/AIDS through a blood transfusion during his first few days of life. Both children were outspoken about their lives with HIV/AIDS and appeared on many television programs. They traveled the country and spoke to thousands of people to increase AIDS awareness. At the same time, they endured public fear and hatred. They were even kicked out of school and asked not to attend church.

In the webinar “AIDS Awareness: Unspeakable Series: Let’s Talk About It,” presented by the Hemophilia Federation of America, Cooper describes his own arduous battle with hepatitis and his inspiration for the series. If you have the time, I recommend watching the entire series, especially those of you in the hemophilia community. “‘Unspeakable’ Part 2: Let’s Talk About It” is coming soon.

We must never forget this horrible medical tragedy that affected people with bleeding disorders and their loved ones worldwide.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.