Becoming Visible: Lisa Hepner’s Journey With ‘The Human Trial’
Craig Stubing launched his podcast “Beta Cell” in 2015 with the aim to talk to a variety of people with type 1 diabetes and dissect the ways it interacts with their everyday lives. Recently Craig talked to Lisa Hepner, director of “The Human Trial.” Billed as the story of a clinical trial that could lead to the cure for type 1 diabetes, “The Human Trial” follows the landmark study of ViaCyte and the lives of the three patients involved in the trial. We’ve highlighted some of the most interesting parts of their discussion below.
Craig and Lisa discuss Lisa’s work in the film industry while having Type 1 and how she came to direct “The Human Trial.”
Craig: The film industry is hectic, right? … Especially if you’re producing, you’re running around a lot. How did that impact the diabetes life balance?
Lisa: That was hard. I mean, I really, really like what I do. So I was in a good mood much of the time, which helped me to weather the struggle of looking after my type 1. There are really long hours and it’s very stressful. I mean, stressful in a good way, I suppose, if you like it, but it’s action-packed. There was a time, I remember I was directing this surf video and I was in Costa Rica. And I was wondering, “Why is my sugar so high? What’s going on?” And I didn’t want anyone to know. I didn’t want anyone to think that I was somehow less capable of directing because of this disease. I didn’t even share it with my good friend, who was my producing partner, and I’m a pretty open person, but I think at that point I really didn’t want to be looked at as someone who couldn’t pull their weight, be competitive and make it because it’s a very competitive business.
Craig: And were you like that for the whole time you were in this industry?
Lisa: I was always open about it, but if I was on a film crew and they weren’t my closest friends, I kept it to myself… It was on a need-to-know basis. And it usually came up at crew meals.
Craig: They’d see you test, or?
Lisa: Yeah, I think this is how I’d put it: I never hid the fact I had type 1. I hid the troubles I was having with type 1, meaning that when my blood sugar was super high and I was groggy and tired, I hid that. I did not want anyone to judge me because my blood sugar was too high and I wasn’t thinking clearly. I didn’t want anyone to know. They knew I had type 1, but I didn’t tell them really what that meant or how it affected me in the moment.
Craig: Was there a point when this changed and you started to become more open about what was going on?
Lisa: I do. I think it was when I met my husband in New York. He saw firsthand how difficult it could be and how I wake up in the morning sometimes with a hypo, with sweat on the sheets and just feeling like I had been run over by a truck, and he saw that. So I was able to share more of that experience with him, and he enabled me to open up about it. In fact, I would never be making this film, “The Human Trial,” without Guy.
I was very focused on just making it in the film business. I didn’t want to make a film about diabetes. I didn’t want it to be my disease film, and I didn’t want to define myself by that. But then Guy being a cinematographer and a filmmaker saw me struggling with it and thought, “We’ve got to do something. People don’t get this disease.” He said, “I didn’t get the disease until I lived with you, so let’s do something.” So that led us to this film to do together. So yeah, I would say he was a big influence on opening me up about type 1.
Craig and Lisa talk about the effect of directing “The Human Trial” on Lisa’s perception of her own type 1 diabetes (T1D).
Lisa: So, The Human Trial is following a clinical trial in real-time that might be a cure for type 1 diabetes using embryonic stem cells. It’s a very ambitious trial where this company we’re following, biotech company ViaCyte, they have created this polymer device, which—think of it as a tea bag in which they’ve put these programmed embryonic stem cells into and those progenitor cells will develop into islet cells.
This film is interesting because we’re following the researchers on their quest to cure type 1 and we’ve been following them since 2014, but we’re also embedding ourselves in with the patients in the clinical trial. And that’s rare to have the patient perspective and the researcher perspective. Then we tell the backstory of what it took to get to this clinical trial through the story of the researchers and that way, we get a full picture of why there hasn’t been a cure and what real hopes there are for one.
Craig: So since you started this Human Trial journey in 2012, do you think your relationship with your diabetes has changed?
Lisa: I like how you frame things in terms of a relationship with diabetes. It’s not just you’re living with this disease, but what is your relationship like, because it is such a demanding relationship. A friend of mine said it’s like a house guest that will never leave.
Craig: It’s give and take. Diabetes can only do based on what you do or don’t do. And sometimes what you do is dependent on what diabetes gives you.
Lisa: When I started this film for real in 2011, we did a Kickstarter campaign. I was in a position of saying, “Yeah, I’m that PWD.” I didn’t even know what the acronym meant, “Person With Diabetes.” And I realized I was thrusting myself into the spotlight of being a type 1 with a message. And it was a little uncomfortable at first, but then I just thought, put my ego aside and just truck forward as a person in the 20th century and put that all aside, and remember that you are the voice and the mouthpiece for a lot of less fortunate people.
I’m driven by idealism. What can I say? So that’s what really propelled me to say, “Yeah, I’m going to put myself out there,” and I really don’t have any regrets. I think we’re on the cusp of editing a really, really good film and I’m really excited about it. I’m thrilled to think that it’s going to play festivals and galvanize the community in a way it hasn’t been galvanized before.
Craig: Before you got into the film, you were worried about being defined by type 1. Do you think you are or is that something you don’t even worry about now?
Lisa: Oh, I think I am and I think I’m okay about that. How could you not be defined by a disease that is so omnipresent in your life, right? I don’t let it define me by saying, “Give me an extra hour of sleep in the morning because I had a hypo in the night.” That’s my Norwegian stoicism, for better for worse, but I don’t mind being defined by it if I can be the conduit to better understanding of that disease. I’m willing to take that stage and do it and be that voice.
Check out the full podcast here:
Beyond Type 1 interviewed Lisa Hepner in 2016, check it out here.