Think you hate seeing yourself on film? Most people do. We’re most self conscious about ourselves when watching video. But, how about seeing yourself projected on a screen several stories tall? Oh my, let me tell you, it’s an experience that makes your stomach turn in knots!
In early June I was in Seattle for a screening of the documentary “RARE.” As regular readers would know, “RARE” follows the experiences of the HPS Network during our efforts to fill a phase III drug trial to treat the pulmonary fibrosis of HPS. It particularly centers on the stories of Donna and Ashley Appell, Ashley’s love affair with Mervin, and my experiences as someone who was in the study.
I always get nervous when I sit in a screening of the film for “outsiders” – people who are not part of the HPS community. I can’t imagine how the film producers must feel. It’s like putting your soul out there, your baby, for the world to evaluate. How will they react? Will they get the point? Will they be drawn in by the story, or look bored?
Thankfully, so far I haven’t had a bad experience at a screening. People seem genuinely moved by the story. I do worry that sometimes they are so pulled in by the story that they’re not catching some of the points I wish they’d understand. But in Seattle, this was not the case.
After the screening we had a panel that included myself; Benjamin Wilford, Professor and Head of the Center for Bioethics, Department of Pediatrics, at the Washington School of Medicine; Stephanie Fullerton, Associate Professor of Humanities and Adjunct Professor of Epidemiology at the School of Public Health, University of Washington and Dr. Maren Grainger-Monsen, the film’s producer.
The audience asked such good and insightful questions! Some of the questions were about HPS such as why haven’t more people with HPS been able to get a lung transplant? Or, why does HPS occur more frequently in the Puerto Rican community. Some were deeper, more probing questions aimed at trying to understand why the trial closed. And some of the questions dealt with ethics. What is ethical when recruiting people for a drug trial, or for research in general? How much do they understand about what they’re doing? What does informed consent really mean?
It’s so exciting to see things start to “click” with an audience.
And, the icing on the cake was that some of our West Coast HPS families were there! I only wish we’d had more time to chat and spend some time together! The night simply went by too quickly.
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