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Rob - Unspeakable: a story that needs to be told

I’d like to take the opportunity to tell you about a miniseries I’m writing and producing called Unspeakable. It’s about the Canadian tainted blood tragedy, something I think we, in the hemophilia community, are all too familiar with.

As a writer, you are always told: write what you know. Well, this is a story I wish I didn’t know. I was a victim myself having contracted hepatitis C during the 80’s. The truth is, I am lucky to be alive to tell the story. My parents were cautious and vigilant and made every effort to do what was best for me. They made sure I stayed on cryoprecipitate during the riskiest times when concentrates were compromised. While that was by no means a sure thing, I managed to avoid getting HIV. Obviously, everyone owes their life to their parents. In my case, I think they deserve a little extra credit.

So, who am I? I am a moderate factor VIII hemophiliac who grew up in the suburbs of Toronto. I will never forget those trips down to emergency at SickKids for treatment. They quickly learned to give me a tray to throw up in when they came at me with those giant needles. I tried to live as normal a life as I could and rarely told people about my condition unless they absolutely needed to know. I didn’t want to be seen as different. I was probably more active than my parents wished. I didn’t play ice hockey but I played a lot of pickup road hockey and once took a “two-hander” to the ankle which started a series of bleeds that decades later led to my first ankle fusion. As an aside, I had a second fusion in the other ankle in 2014 and wish I’d done both earlier. It’s given me a new lease on life.

I always had a passion for writing and used to invent stories to entertain my little sister. When I was seven, my father demonstrated what was clearly one of his greatest lapses in judgment ever when he decided to take me to see the movie Jaws. I don’t know if hemophiliacs generally have a greater or lesser fear of blood than most people, but I certainly didn’t react well. It gave me nightmares for the next two years. Maybe more. On the bright side, I look back and know that time in my life really crystallized my desire to control the thing that had affected me so deeply. Not killer sharks. Storytelling. Movies. And TV. It should also be easy to understand why my favourite show growing up as a kid was The Six Million Dollar Man. It seemed pretty likely to me that if I was ever going to do the things I wanted to do I was going to need some bionic body parts.

As I’ve said, I was exposed to hepatitis C in the eighties. I then underwent my first treatment with interferon several years later when I was in my twenties. The side effects were not fun and it was clear it wasn’t working so I quit after three months or so. After that, I focused on my career and personal life, waiting for new treatment options to come along. Newly married, my wife and I moved to Vancouver in 1997 so I could begin working as a writer on a sci-fi series called Stargate SG-1. I worked my way up to executive producer and show runner and helped create two spin-off series. Stargate became one of the longest running television franchises of all time and is probably what I am best known for.

During season four of Stargate Atlantis, I had to take a year off from full-time work to go through my second hepatitis C treatment. This time it was interferon and ribavirin. I started the week my third daughter was born. Yes, my wife is some kind of hero. The treatment was as tough as anything I’ve ever had to endure. It was a very long and traumatic year and the news at the end that it didn’t work was truly gutting. Again, I would have to wait and see. Nearly nine years later my health began to decline due to the effects of the hepatitis C and the need for treatment was becoming more urgent. There were new combination therapies with better results in trials becoming available but the cost was incredibly high, and who was going to pay for it was a swirling issue. I am happy to report that in 2014, I went through a third and final treatment and was finally deemed “cured.” A year later, I was feeling considerably better than I had in years and the opportunity to develop a limited series about the blood tragedy came about.

Unspeakable is an eight-hour drama inspired by real events – not a documentary as some people seem to misunderstand. Starting in the early 80’s when AIDS was first emerging on the scene in Canada, the show primarily follows two families with hemophiliac sons through more than a decade as the scandal unfolds. It is quite surprising that so many outside our community either don’t know what happened or have forgotten. Which is another reason to revisit it. It shouldn’t be forgotten.

I have always been a private person. Perhaps in part because I grew up in a time when the threat of prejudice against anyone who was seen as a potential AIDS victim was so frightening. While I was quite sick from hepatitis and the multiple treatments I endured, it never crossed my mind to try and tell this story in the way I am now. I couldn’t bear to face it when it was happening. It would have been too painful. Nor do I think I had the right perspective and frame of mind to address it the way it needs to be addressed. However, I have come to realize that “opening that drawer”, digging through those feelings and experiences might help both myself and others. It’s a story that needs to be told - for so many reasons. I consider the opportunity a privilege and I only hope I do it justice.
Those of us involved were thrilled that the announcement of the series pick-up broke through to the mainstream media and was mentioned in The New York Times and Washington Post and not just as an entertainment footnote. As far as broadcast, it will be on CBC in Canada, Sundance TV in the U.S., and AMC Studios will be distributing it around the world. I don’t have an exact airdate just yet but it will be on sometime in the fall of 2018. I’ll definitely let you know! For now, we are still hard at work writing the scripts. Production won’t begin until the spring but that is racing toward us!

In speaking to people about the story, I have made so many meaningful connections with those that were touched by it. I very much appreciate their honesty and support. I’d like to thank everyone who has spoken to me and shared their experiences thus far including the invaluable Bill Mindell, Bob O’Neill, David Page, and Horace Krever just to name a few. Also, special thanks to Vic Parsons and Andre Picard whose incredible books the series has largely drawn from. Finally, some special appreciation to Ann Harrington, Dr. Jerry Teitel and the doctors and nurses who did more than just care for me over the years. They cared about me. It is impossible to properly reflect a real-life tragedy such as this. It was so devastating, so big, so detailed and intricate and so emotionally charged. The reverberations are still being felt today. I can only hope that drawing attention to it in this way will have some small and positive effect. For more, or to follow our progress please go to www.unspeakableseries.com where you can find our Facebook and Twitter links.

- November 2017