‘The Human Trial’ documentary explores why we still don’t have a cure for diabetes

In the face of the COVID-19 pandemic, as scientists and researchers work to make vaccines and treatments as quickly as possible, the documentary The human trial follows the search for a cure for the global diabetes epidemic and explains why it’s taking so long.

“It’s become a joke in the community that the cure is still five years away. Stay strong, the cure is on the horizon,” says Lisa Hepner, who was diagnosed with type 1 diabetes more than 30 years ago and produced and directed the film with husband Guy Mossman. The human trial. “But each year more than five million people die of diabetes while waiting for this treatment.”

In 2014, the filmmakers landed the story of a small biotech company, ViaCyte, reimagining how to cure diabetes using embryonic stem cells, but had no idea that on their second day of filming, the US Food and Drug Administration (FDA) would give the company the green light for its clinical trial.

In The human trial Hepner and Mossman give us a unique insight into ViaCyte’s clinical trial, developing a bioartificial pancreas for the world’s sixth embryonic stem cell trial, which could potentially cure type 1 diabetes. Earlier this year, ViaCyte has was acquired by Vertex, another biotech company working on its own stem cell treatment.

“It all starts with the pancreas, the ugliest organ in the body,” Hepner says in voiceover in the film. “In type 1 diabetes, the body attacks itself and destroys the cells that produce insulin, and when you don’t have insulin, sugar builds up in the blood and cannot enter cells. It is as vital to the body as oxygen.

She goes on to point out that too much sugar in the blood is toxic and can lead to blindness and strokes, to name a few risks. When people with type 1 diabetes have low blood sugar, they can become unconscious or die.

“I constantly inject myself with insulin to control the amount of sugar in my blood,” Hepner says in the film. “Normal blood sugar is flat with an odd peak, my blood sugar is like the Himalayas.”

Maren Badger in

Maren Badger in the documentary “The Human Trial”

“We didn’t know what this clinical trial would look like for patients”

What is particularly fascinating and unique about The human trial this is how he shows the “firewall” or barrier that exists between the two worlds of clinical trials, patients and researchers.

“When we started making this movie, we didn’t know what this clinical trial was going to be like for the patients,… I don’t think the patients really knew either, I don’t think the biotech company knew either,” Lisa Hepner said Yahoo Canada.

There were seven trial sites in the United States and Canada, and in The human trial we meet Maren Badger and Greg Romero, via the University of Minnesota website.

Badger is patient number one, the “pioneer” of the trial. She was diagnosed with type 1 diabetes at the age of two and had her first attack when she gave birth to her first biological child, another during the birth of her second child, which led her and her husband to adopt four children.

Romero was diagnosed at age 11, and his father also suffered from diabetes and became completely blind. In The human trial, we also see the patient losing his sight. Romero admits he spent years not dealing with his illness, sometimes not being able to afford the insulin and medication needed to do so, but now he doesn’t want to ‘give up’ his illness. daughter.

Greg Romero with his daughter in

Greg Romero with his daughter in the documentary “The Human Trial”.

Throughout the film, we see Badger, in particular, wondering if she’s actually seeing any positive results from the trial, or if any improvements are the result of some other contributing factor, or if it’s just a placebo effect.

Of course, the filmmakers had to earn ViaCtye’s trust that they would not film or disclose anything that could jeopardize the trial, including patient interactions that could put their entire study at risk. But the film raises an important question about what this “firewall” between researchers and patients really needs to look like.

“Standard operating procedure for any clinical trial is to have the firewall in place to ensure the integrity of the study, we understand that is important,” Lisa Hepner said. “But does that firewall have to be as thick as it is? Does it have to be impenetrable? Can’t we improve the patient experience?”

“It was really important for us to show that, to show what these patients were going through, because too often we read a headline, ‘Covid vaccines in arms’, but why did that happen? is happening because people volunteered for these studies, they volunteered to put this vaccine in their arms when they didn’t know if it was going to work… So without the people, the participants in the clinical trials that sacrifice themselves for us, we wouldn’t be living normal lives right now.

Behind the scenes of

Behind the scenes of the documentary “The Human Trial”

“I think anyone else would have retired”

What is not often shown in science documentaries is the physical and emotional toll of being a participant in a clinical trial, with their desperation for the trial to succeed very evident. But The human trial honestly does, especially with a type 1 diabetic leading us through the story.

“I think it was difficult for Lisa too, as you can see in the film, seeing patients dying in this way and not being able to help them, that speaks to a lot of discipline, at least as a storyteller, in as a journalist to not cross that line with them,” Guy Mossman said. “I think this is truly an exceptional situation and can only be achieved by a filmmaker who has been personally afflicted by the condition, where we would have stood up like we did with so many unknowns, I think anyone else would have pulled out.”

“I think because I have type 1, my motivation was more genuine and genuine,” Lisa Hepner added. “Other people definitely could have said it, I don’t know if they would have stuck it, when I was like a dog with a chew toy, we weren’t going to let it go because we didn’t know where was the science was directed.

“People really want to see things tied together in a neat arc and I think science and a story about science really goes against that. We are looking for a happy ending, we are looking for an ending where we have a conclusive ending. I think the film shows that science is much more complicated.

As someone with type 1 diabetes, Hepner emphasizes that the momentum that has been building for international research communities to find a cure and treatment for COVID-19 should be the blueprint for finding a cure for the disease. diabetes epidemic. We were able to innovate quickly for COVID-19, so should we for a cure for diabetes.

“Am I tired of diabetes not being taken seriously? Absolutely… It’s a serious disease, the fact that people think it’s benign, just eat better, just take your insulin shot and shut up, it’s not like that,” Hepner said. “It’s not just a financial drain, it’s a mental drain, it’s a physical illness that is debilitating, whether it’s short term or long term, this illness needs to be cured.”

“My message is to have tangible hope based on knowledge and science, and if you follow the science and talk to researchers, there is realistic hope for a functional cure in five years. We need to keep making a lot of noise to make sure the funding continues… Some people in the diabetes community who have money and access to treatment will say, “Oh, it’s a manageable disease”, but …it’s not for most people… Don’t turn your eyes on most people who are in great pain.

The Canadian premiere of The Human Trial will take place in Toronto on October 24th. The film will be available on Amazon, Apple TV, Google Play and other digital platforms on November 11.

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