Film raises hope for type 1 diabetes cure
When documentary filmmaker Lisa Hepner was diagnosed with type 1 diabetes at the age of 21, she was told the cure was likely five years away.
That was over three decades ago.
Hepner says that, within the diabetes community, people joke that a cure is always five years off. In the past few years, though, thanks to the director’s latest project, Hepner’s starting to think a cure might be on the horizon.
“I think that the diabetes community might argue that I’m propagating false hope, but I fully believe that within the next five years there will be a press conference akin to what happened with Banting and Best,” said Hepner. “I don’t think that a functional cure will be available to the public in five years, because you have to go through multiple phases of human trials before that happens.”
Hepner’s reference is to (Dr. Frederick) Banting and (Charles) Best, whose discovery of insulin a century ago was front-page news.
“Toronto doctors on track of diabetes cure” was the headline for the lead story in the Toronto Star on March 22, 1922.
Not to diminish this life-saving and groundbreaking treatment, the problem is that insulin wasn’t actually a “cure.” A functional cure has been more elusive. And since over five million people die of diabetes type 1 every year, we still need a cure. Insulin, as valuable as it is, isn’t enough.
Hepner, however, whose new film, “The Human Trial,” is about an emerging cell therapy treatment for type 1 diabetics, is hopeful about the promise of regenerative medicine.
The film, which she worked on with her partner, cinematographer Guy Mossman, focuses on a single human trial conducted by ViaCyte, an American biotech company that’s pioneering a stem cell-derived cell replacement. Six months after the first human clinical trial, most subjects demonstrated a response to the cell therapy in that they exhibited a functional insulin response, which shows that the cell implants can work in humans.
Great news, obviously, but there are still plenty of hurdles, which is why none of this is front-page news yet. Aside from the fact that it’s only one clinical trial involving human subjects, another problem is that our bodies generally reject foreign cells, so the next step is finding a cell line that, with the help of gene editing technology, won’t be rejected by recipients.
All of this will require more human trials, which the documentary demonstrates are an incredible undertaking: for both the scientists and the research subjects. Much of the film, in fact, is focused on the physical and emotional toll on the patients who undergo the experimental treatment.
“We never anticipated that it was going to be this hard on the patients,” recalled Hepner. “We didn’t fully understand that they were going to have to go through like five surgeries in four or five months.”
The medical interventions for a clinical trial such as this are draining, of course. One thing that comes through loud and clear in the film, though, is that the psychological stress is likely even worse, mainly because the volunteers are desperately hoping the treatment will work. And, in this particular case, since the participants were under constant medical supervision they were keenly aware of every fluctuation in their vital signs.
“There was an immediate feedback loop for the patients, so they could think perhaps the cells were working because their blood sugars were looking good,” explained Hepner, noting that people seemed better even before the cell therapy could have begun working. “In reality, maybe their glucose levels improved because they had such good medical care.”
Sadly, the cell therapy didn’t work for all the participants. All of them can take some comfort in knowing they helped advance the science, though, which may one day be a life-saving gift to someone else. But just imagine the physical effort involved in enduring surgeries compounded with the hope that this might be the thing that keeps you from losing your vision. Or a limb.
“We often don’t know the sacrifices that clinical trial patients make for the rest of us, and it’s rare that you get to see it or read about it,” Hepner said. “I think we need to acknowledge and really respect those who do this for the rest of us.”
And one of the reasons we hear so little about the lived experience of volunteers is that few researchers would ever let camera crews in to document the process. It took about a year for Mossman and Hepner to get ViaCyte to agree to give them this “unprecedented access.”
“At first, they saw no reason why they should allow cameras into a clinical trial that was so groundbreaking and experimental,” she recalled. “Especially since we were going to cover the warts and all. And we said that.
“And nobody knew how it was going to end, right? So there were a lot of unknowns. But we jumped off a cliff together, if you will.”
“THE HUMAN TRIAL” CAN BE PREORDERED ON APPLE TV/ITUNES. IT CAN BE WATCHED ON DEMAND ON APPLE TV, PRIME VIDEO AND GOOGLE PLAY STARTING NOV. 11, JUST IN TIME FOR WORLD DIABETES DAY ON NOV. 14.