“The Human Trial:” A Documentary on the Unsung Heroes of Diabetes Research
"The Human Trial" is a personal and emotional film about the patients and researchers who risk everything to be the first to use a radical new stem cell treatment in the hopes of finding a cure for type 1 diabetes. Find out more about this documentary and where you can view it.
When will type 1 diabetes be cured?
If you have type 1, you’ve probably heard it said: “The cure is five years away.” To Lisa Hepner, this five-year promise has become a running joke in the diabetes community – except, of course, the joke is always on those of us who are decidedly uncured.
Hepner is a filmmaker, and she wanted to find out why, exactly, a cure for type 1 has been so elusive and what time frame, if any, might be realistic.
The result is an ambitious documentary, “The Human Trial,” which was more than a decade in the making. Hepner and her husband, Guy Mossman, who co-developed the film, follow a clinical trial, in which embryonic stem cells were transplanted into type 1 patients. The hope was that those cells would evolve into islets that produce insulin, would survive in the body, and would cure the disease.
“The Human Trial” follows two separate storylines – one is about a small biotechnology company in San Diego, ViaCyte, whose researchers believe that their novel cell-based replacement therapy will cure type 1; the other is about the first two patients who volunteer for the trial to determine whether it actually works.
I’m not giving away the ending by saying that type 1 diabetes is still not cured, but “The Human Trial” is a keenly observed and deeply emotional film about the lived experience of diabetes: the daily struggles, and occasional heartbreaks, of patients, but also their determination and perseverance. In addition, the documentary lifts the veil on what a clinical trial is all about, which requires – at least for the subjects – a combination of sacrifice, grit, and courage.
Hepner is herself an important figure in the film, as she shows on screen the peaks and valleys of her blood sugar numbers – she compares them to the Himalayas – and she conveys how the damage from diabetes is easily concealed.
“The irony,” she says, “is I look healthy, but I’m not.”
She also notes, amusingly, that the pancreas is the “ugliest organ in the body,” but her frustration is the beating heart of the film.
“Do you feel guilty that the cure is always five years away?” she asks a researcher at ViaCyte.
He demurs, saying that he feels hopeful.
ViaCyte emerges as an underdog company run by brainy scientists who are in constant financial straits. At one point, the company has 180 days of cash. Its executives fly to Saudi Arabia and Japan to beg for money but return empty-handed. It’s a struggle in the United States as well. ViaCyte, which is privately held, is in a catch-22. The investors say they won’t give ViaCyte money until they see the promising data, but the company says it can’t get the promising data until it has the money to run the trial. One side is looking to cure a disease. The other side is looking for a return on its investment. Their objectives, not to mention their values, are not aligned.
The best part of “The Human Trial” are the portraits of the first two subjects in the study, both of whom enrolled at the University Minnesota Medical Center.
Maren Badger was diagnosed with type 1 diabetes at age 2. As a young adult, she and her husband had two children, but after Maren experienced seizures during each birth, she decided she could no longer take that risk. The couple adopted their next four children, but seizures – or extreme low blood sugars – remained a daunting fear.
Greg Romero was diagnosed as a child, and his father died of complications from type 1 – Greg keeps his ashes in an urn. Greg is now a husband and father, and he wants to be there for his young daughter. But he acknowledges that his control was not good for a long time, and he is now losing his vision from diabetic retinopathy and has nerve damage as well.
As part of the trial, both Maren and Greg have 10 pods surgically implanted in them, with the pods containing the stem cells that researchers hope will become insulin-producing islets. They both recognize the potential benefits to them individually, but they also understand that much more than their own health is at stake. They are doing it for others, and for history.
And the sacrifices are many. The surgeries carry risk. The implanted pods appear uncomfortable. There are headaches, exhaustion, and infections. There are toxic immunosuppressant drugs. There are painful blood draws. There are scars and bruising. There are emotional swings, uncertainty, and tears.
It is not so much a trial but a crucible.
“It messes with you,” Maren says.
When Greg is told in his doctor’s office that his transplant didn’t work – that he would not be cured – he pauses and then murmurs, “The more silent I get outside, the more loud it gets inside my head.”
Even though the trial fails for Maren and Greg, the documentary ends on a modestly upbeat note, as Viacyte’s stem cells are producing insulin in nine other patients. Nine! These transplanted cells may indeed work, and Hepner believes in the very promise that had once made her eyes roll. In five years, she says, we can get a cure – if the researchers are supported financially and if our political leaders make curing type 1 diabetes a priority.
I encourage people to watch “The Human Trial,” as viewers will appreciate the unsung heroes in diabetes research. If a type 1 cure is ever found, the researchers will join the pantheon of Hippocrates and Salk and Fleming as well as Banting and Best. But it is the anonymous volunteers in these human trials – the likes of Maren Badger and Greg Romero – who assumed the risks, invested their time, and endured the traumas, it is on their brave shoulders that we will rise.
The premier of “The Human Trial” was in New York on June 23, and the documentary will be shown in select theaters and virtual cinemas across the country. For more information on where you can watch, see https://www.thehumantrial.com/