"I am a mouthpiece": Lisa Hepner discusses her groundbreaking diabetes documentary: The Human Trial

“I feel like I am a mouthpiece for most people who have the disease,” Lisa Hepner, a type-one diabetes sufferer, says without a hint of burden, but rather excitement and determination for where her position could take her.

Lisa is a filmmaker and producer based in Los Angeles who has dedicated the last 10 years of her life to filming one documentary: The Human Trial. Alongside her partner and fellow filmmaker, Guy Mossman, Lisa secured unprecedented, real-time access to a clinical trial for a radical stem cell treatment for diabetes – only the sixth-ever embryonic stem cell trial in the world.

Despite following the trial for a decade, there’s still a huge amount of determination and drive in Lisa’s voice as she talks.

“I live with this disease. It’s omnipresent, it’s always on my mind,” she says.

Diabetes currently affects 537 million adults worldwide with 8.4 million suffering from type-one. Type-one is caused by an autoimmune reaction where the body’s defence system attacks the cells that produce insulin, leaving the body without a way to regulate blood sugar levels.

“Diabetes is a much more complex disease than it looks like. We have to fight the image of diabetes that ‘all is good, just don’t eat cake’,” says Lisa, rolling her eyes and laughing at this common misconception, sharing that her aim for the documentary was to shed light on the disease and show how close researchers are to a final cure.

But looking back at the very beginning of the journey 10 years ago, Lisa explains that it took some persuading by her husband, for her to agree to make the film.

“I didn’t want to define myself by this disease,” Lisa says. “I just wanted to be a producer in New York but then we heard about this trial and looked at the stats and I thought, ‘oh my god, it would be a disservice if I didn’t do something’”.

After suffering through a period of severe low blood sugar levels called hypoglycemia incidents, Lisa agreed to begin the documentary-making journey. From 2010, Lisa researched, directed and featured in the film, balancing on a firewall between the patients and the researchers in order to give viewers a unique insight into a clinical trial and life with type-one diabetes.

“It was my job as a filmmaker to show, as best I could, what it’s like to experience this disease on a daily basis,” she explains. “Following a clinical trial in real time was so experimental, it was something I had never done before. I was literally stumbling my way around in the dark following action in real time, hoping that the researchers would get to the next phase of their trial.”

Balancing her emotional attachment was a key part of the 10-year process, says Lisa. The sheer length of the trial and the connections built up with the two patients, Greg and Maren, who feature in the film, challenged Lisa to put on what she calls her “objective journalist hat”.

“As the director, I kept thinking, ‘do we have the shots and the scenes,’ while being in the film and being moved emotionally,” says Lisa. One of the most difficult moments was the scene in which she visits Banting House, the place where the hypothesis for insulin – used to keep diabetic’s blood sugar levels in control – was dreamt about by medical scientist, Frederick Banting.

“I was moved and tearful. It was huge,” explains Lisa. “It was a very big moment in terms of understanding your own mortality, and what you owe to someone for keeping you alive.”

Lisa has relied on insulin as a treatment for her type-one diabetes since she was diagnosed at 21-years-old. Despite doctors telling her a cure was just five years away, Lisa has suffered 30 years of symptoms, managed by insulin and regular appointments to check whether the diabetes could cause her to go blind. Her next appointment, she tells me, is tomorrow morning, at which the doctors will check on the black spots that have started to appear in her vision.

“I think anyone with diabetes is the most afraid of that complication because who wants to go blind, honestly” says Lisa.

And it is this fear which makes up the most emotional scene in the whole documentary. After spending years connecting with Greg, Lisa documents the appointment where the researchers tell Greg he is going blind.

“When you experience this complication firsthand, it sends a chill through you. Greg is so honest about it, he’s not putting a band-aid on it,” Lisa pauses to recollect herself, “yeah, it was pretty powerful. I’ve seen it a gazillion times and I still cry.”

For Lisa and the rest of the production team, these emotional moments were amplified by h the complexity and length of the trial, but this rawness was an essential part that Lisa was determined to capture from the very beginning.

“When we started with the patients, I said: ‘Listen, this is our chance to say what [diabetes] is like and I need you to trust me; we need to trust each other’”, says Lisa.

Being open about her own struggles with diabetes created a unique connection between herself, Greg and Maren, Lisa explains. The patients felt able to honestly share their experiences and commit to years of exposing their vulnerabilities to Lisa and the camera – now, Lisa speaks of Greg and Maren as though they are family.

It’s the personal connections and the film’s impact that Lisa is most proud of; rather than the critical acclaim and the awards – a total of five to date – the documentary has received.

“When you see audiences react to it and they say that for the first time their experience has been captured. Wow. It makes it all worthwhile,” Lisa says, her shoulders visibly relaxing as she describes the weight the documentary has had on her life.

“It’s not the awards. Yeah, they’re nice. But you know, it’s really about the lasting impact,” she says. “I can raise awareness around this disease and get it cured faster.”

With a laugh, almost in disbelief, she says: “Wow. That’s kind of amazing.”