A cure for type 1 diabetes, if it is found within our lifetimes, is not likely to result from some a “Eureka!” moment. Instead, it will be the result of decades of patient, frustrating, and unbelievably expensive work, work that would go nowhere were it not for the very brave and occasionally desperate patients that offer their own bodies up for the sake of medical progress.
The Human Trial is a documentary that shines a light on these “two worlds in a clinical trial,” the scientists that develop the experimental treatments, and the people that volunteer to test them. Medical innovation can be a slow and frustrating process, and this film shows us how the sausage gets made. It’s fascinating viewing for anyone interested in diabetes and a diabetes cure.
I’m well aware that most people in the type 1 diabetes community regard any news about a “cure” with suspicion. Let’s be clear: this is not a naïvely optimistic film. It is often sad, and occasionally upsetting. The co-director and narrator, Lisa Hepner, has type 1 diabetes herself; at the beginning of the film, she experiences what may be the first tingling of diabetic neuropathy in her foot. Like so many other people with diabetes, she’s been assured that a cure is “only five years away” for 30 years or more. The film grew out of her exasperated question, “what is taking so long?” She’s eager and hopeful, but she’s also skeptical, an attitude that may feel familiar for many viewers familiar with the condition.
We begin our story in 2014: the biotech firm ViaCyte has grown transplantable islet cells that it believes will produce insulin, but it has yet to try them out in a human patient. It took a staggering amount of work to get to this point – the business has already been at it for over a decade.
The stars of The Human Trial are Maren Badger and Greg Romero, two of the first patients that volunteer to have the experimental ViaCyte islet cells implanted in their bodies. Maren and Greg have lived with diabetes for most of their lives, and both have suffered severely from the condition. Maren has had multiple life-threatening hypoglycemic seizures; Greg, who has fought with diabetes burnout and been forced to ration his insulin, is hampered every moment by worsening diabetic complications. “I’ve had a headache since 1985,” he cracks, only half-joking, while he lies incapacitated by yet another illness.
Our volunteers are aware of the historical role they’re playing, and of how courageous their service is for the millions of people that might benefit. But they’re also desperate for a cure, and dearly hope that the experiment will work immediately and solve their own problems. Maren says, “If it works, it’s like winning the lottery… I would rather have this than win the lottery.”
Maren and Greg agree to undergo one surgery to implant “teabags” of islet cells in their body, and then multiple surgeries to remove them one by one. The film follows them for several years, through the entirety of the clinical trial and its aftermath. Due to the “convoluted protocol” that governs clinical trials, the patients and scientists never meet or share information, and therefore Maren and Greg can only guess as to whether or not the trial is going well. Only the filmmakers – and us – know what’s happening on both sides of the firewall.
It’s not giving away any spoilers when I tell you that the experiment has mixed results. If Maren, Greg, or any other volunteer experienced substantial diabetes remission, it would have made global news. We’re watching just one little step towards a cure, not a miraculous leap.
ViaCyte’s dogged progress has been well-documented on Diabetes Daily and other news organizations. Vertex, another biotech firm that is working on a very similar therapy, appears to have a leg up in the race for the cure: their first patient is now insulin-free, although he does require immunosuppressive treatment. But we recently learned that ViaCyte has begun trials on an even more exciting remedy. A small number of patients have now received transplants of lab-grown insulin-secreting islet cells that have been gene-edited to evade the immune system, with the hope that they will not require anti-rejection drugs.
The scientists are optimistic and dedicated, but they’ve got their own problems to deal with. We see that ViaCyte, a “small fish” in the world of medical tech, is operating under the intermittent threat of financial disaster. ViaCyte will require hundreds of millions of dollars, perhaps billions, to bring its therapy to market. It’s just not possible to raise that kind of money from charities and government funding, and executives travel from Saudi Arabia to Japan to court wealthy donors. They also need to cement relationships with the pharmaceutical giants with which insulin users have such an uneasy relationship.
ViaCyte is confident that it will cure type 1 diabetes. Eventually. The film, however, is suffused with the disappointment that, despite clear progress, the timeline just keeps getting pushed back. When Greg completes his trial and has his last implanted cells removed, he asks a clinician when the therapy will be publicly available. She sheepishly estimates “five to seven years,” a number we suspect to be unrealistically optimistic. It’s a crushing answer for a man whose health is declining so rapidly, who thought he might have been so close to a cure already.
We’re happy to recommend The Human Trial to anyone in the type 1 diabetes community. This isn’t just a hobby film. It’s a real, professional production, directed by Hollywood veterans. The narration is sparse, and the film isn’t stuffed with unnecessary explanations or talking heads. Director Lisa Hepner is a relatable guide: she asks the questions we would ask, and places the camera like a fly on the wall to watch the messy scientific process play out in real-time. We can only hope that the hard work and sacrifice that she captured will lead to a remedy or cure for this challenging disease.
The Human Trial opens in select theaters on June 24, and can be enjoyed at home through virtual cinemas. Check out the trailer here, and visit the official website to find out how you can watch it.
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