Novartis created a film called Becoming Christopher, which you can view at this link.
At the conference, it was a pretty hot topic. Specifically, is it appropriate for an actor to portray a patient, or should only actual patients have that voice?
On one hand, there are so many patients out there, you’re bound to find one who can helpfully explain what it’s like to go through what they’ve gone through. On the other, can one patient, one individual, really show what it’s like for everyone? Can’t an actor carefully portray many views?
Someone in the audience asked why couldn’t they find an actor that had CF. One interesting and quite valid point made was that most actors do not have health insurance, and so acting might not be a popular profession for those with CF.
It all made me think of the two Crohn’s documentaries I know of, I think I may have even mentioned them when I blogged during the conference. One was made by a person with Crohn’s, True Guts, and the other – which was actually about three autoimmune conditions – was made by a pharma company, Innerstate (made by Centocor, the makers of Remicade.) Both were documentaries that followed three patients. So, they were very real. But still – even those were influenced heavily by their creators. Whoever was doing the editing got to choose what the audience actually saw.
The artist Marcel Duchamp was obsessed over controlling what his audience saw to the point that his final work can only be viewed via a small hole in the wall, so there’s no way you can look at it from a different perspective. And yet, every person viewing that artwork are coming to it from different experiences and different contexts, and so there’s no one way that anyone will view it. But I digress.
While the discussions went on, I couldn’t help but think that Novartis was doing a good thing. First, as knowledgable as I am personally about health and health issues, I know nothing about CF. Second, I don’t know anyone who’d be as open and honest about every aspect of their life affected by disease, so it seems that you’d have to have an actor portray this. Third, perhaps there were certain hardships and issues that happen to many people but not everyone, and they wanted to make sure to point out what they thought were the most important issues. For example, I personally don’t have GI issues with my Crohn’s – I have joint issues. So, a typical Crohn’s patient in a documentary wouldn’t have the issues I have and I might not relate to them.
I know the jury’s still out but I do think it’s good at the least that this has people talking.
By the way – this is the last post I’ll do on the e-Patient Conference for the special giveaway, where you could win a copy of ePatientDave’s book, “Laugh, Sing, and Eat Like a Pig.” Comment on this or other of my e-Patient blog posts from the last 2 weeks to enter to win! I will be choosing a winner on Wednesday of this week.