Here is the link to the CTV News story about my situation. I believe the video portion cannot be viewed outside of Canada, so here is the video.
Also, I will be participating in a press conference tomorrow, October 15 at 1:30, at Queens Park, with a few other cancer patients whose applications to the Case-by-Case Review or the Out Of Country programs have similarly been wrongfully denied. I think the plan is that each of us will read short prepared statements and then we will all take questions.
I want to thank the many, many people who saw the CTV News story and then made a donation to my Go Fund Me. We have that phrase “the kindness of strangers,” and I’ve experienced it many times before, maybe especially in Papua New Guinea when people have literally gone out of their way to accompany me somewhere so I wouldn’t be walking around alone, but I’ve never experienced it from so many people all at the same time. I don’t even know what to say. I’m so profoundly moved by your generosity and sympathy and care. You have made it possible for me to pay for my two doses of zenocutuzumab in November, and you have given me the fortitude to keep fighting. Sydney Towle, who I talked about in an earlier post, always said “Keep Swimming,” but sometimes you need someone to give you a kickboard or something so you can keep swimming, and you have given me that.
And I hope that I am paying it forward, in a way, by fighting for other Ontario cancer patients out there who have also been denied the funding they need for a life-saving drug. If you have experienced this, please reach out to your MPP and let them know. And the same goes for caregivers of patients who were denied funding through these programs and died. I don’t know what will come of it, if anything, but I do know that it can’t just be the four of us up there tomorrow who have experienced this. There’s got to be more of us.
Finally, I just want to say a few words about the CTV News interview. The reporter interviewed me for more than an hour, and what I had to say got boiled down to about 1 minute. Of course. I mean that’s how it works. But, I feel especially bad that the parts where I talked about C3 (the Canadian Cholangiocarcinoma Collaborative, Canada’s version of the Cholangiocarcinoma Foundation) got left out. I really was trying to bring media attention to that organization and all the good things they do, and we also suggested that the reporter interview someone from that organization, and I don’t know what happened, but no one from C3 is in the news segment. And I probably won’t mention them at the press conference tomorrow because the point is to shine a spotlight on the Ontario Ministry of Health’s failure to honour the life-saving promises of the Case by Case and Out of Country funding programs, not to educate viewers about particular kinds of cancer and the organizations that advocate for them (the other patients on the panel have other kinds of cancer).
“Failure to honour” is such a nice way of putting it…..I don’t plan on being so nice tomorrow.
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