In the three decades since she was first diagnosed with type 1 diabetes, Lisa Hepner has lived up to a vague promise she often heard from doctors who believed medical science would restore her body to health. “Be strong,” they said. “The cure is only five years away.”
But the cure isn’t here yet, and Hepner, 51, a filmmaker in Los Angeles, continues to be handicapped by her body’s inability to produce insulin, the sugarregulating hormone produced by the pancreas. “I might look good to you,” she said, “but I feel terrible 70 percent of the time.”
Staying healthy can be stressful for many of the 37 million Americans with some form of diabetes. There’s 24hour bloodsugar monitoring, constant injections of lifesupport insulin, and the potential threats of the diabolical complications of diabetes: heart disease, blindness, kidney damage, and the possibility of losing a gangrenous limb to amputation.
“‘The cure is in five years’ has become a joke in the diabetes community,” Hepner said. “If it’s so close, why is it taking so long? Millions of us have now died.”
That sense of dampened hope led Hepner to spend nearly a decade tracking the development of ViaCyte, a small biotech company in San Diego, California that was working to develop what would essentially be an artificial pancreas. If successful, his stem cellderived therapy would eliminate lifelimiting stitches and insulin injections for 1.5 million Americans with type 1 diabetes. Vertex Pharmaceuticals, a Bostonbased biotechnology company developing a similar therapy, has already made significant strides.
Since its theatrical release in June, The Human Trial, a documentary she produced with husband Guy Mossman, has electrified the diabetes community, especially those with type 1, a disease often confused with the more common type 2.
Unlike type 2, which comes on slowly in adulthood and can sometimes be reversed early with exercise and dietary changes, type 1 is an autoimmune disease that usually occurs without warning in childhood or adolescence.
Type 1 is also much less common, affecting about 10% of people with diabetes. A pancreas transplant can cure the disease, but donor organs are scarce and the surgery carries significant risks.
Most years, only 1,000 transplants are performed in the United States. To prevent the body from rejecting the implanted pancreas, recipients must take immunosuppressive drugs for life, which make them more susceptible to infections.
Therapies developed from human embryonic stem cells offer the best hope for a permanent cure, according to many experts. “The Human Trial” offers a rare insight into the complexities and challenges of developing new therapies both for patients who have volunteered to participate in the extensive FDAmandated clinical trials and for ViaCyte executives who continually struggling to raise the money needed to bring a new therapy drug to market. Today, the average cost, including the many failed attempts along the way, is $1 billion.
At a time when the soaring prices of insulin and other lifesustaining drugs have clouded public perceptions of the pharmaceutical industry, the film also stands out for its admiring portrayal of a biotech company whose executives and employees genuinely seem to be helping humanity .
The Human Trial, which can also be viewed online, has become a rallying cry for Type 1 patients, many of whom believe that only greater visibility can unlock the research funds needed to find a cure.
Those who saw the film were also empowered to see their own struggles and dashed hopes reflected in the journeys of the two protagonists, Greg Romero and Maren Badger, who became the first patients to fall under the bags of experimental cells implanted in the skin.
Stigma often leads people with type 1 to hide the disease. In his quest to feel “normal” in college, Todd Boudreaux said he avoided telling friends about the disease, a decision that could have dangerous consequences in the event of a low blood sugarinduced attack.
Hepner also spent much of her life downplaying the disease, even with her husband Mossman. She recalled her confusion early in their relationship when he woke up to find her groggy and sweating, a result of hypoglycemia, or low blood sugar. The more Mossman, a cinematographer, learned about the disease, the more he urged her to do the film.
Hepner held out for years, fearing she would draw unwanted attention to her health. “It’s a competitive world, and I just didn’t want people to be like, ‘Oh, she’s not thinking straight because her blood sugar is high,'” he said.
But over time, the ubiquity of breast cancer awareness campaigns and highprofile efforts to cure Alzheimer’s disease, made Hepner realize that his cinematic skills could change public perceptions of Type 1, an almost invisible disease, in part because many people, they have, so don’t look ill.
She hopes to change other misconceptions, including the notion that diabetes is a relatively inconsequential and “controllable” disease that’s been popularized by TV ads for biglab wellness drugs, as they depict confident patients playing tennis, basketball, and ride a hot air balloon.
In fact, the industry spends a fraction of its dollar on research to find a cure. The rest, according to the Alliance to Cure Juvenile Diabetes, goes toward developing drugs and devices that make living with the disease easier.
The return on investment is undeniable. For those who can afford it, continuous glucose monitoring devices can eliminate the need for fingerprint testing, and the devices can be paired with cellphonesized insulin pumps that take much of the guesswork out of dosing.
Hepner deeply appreciates the wonders of insulin: at one point in the film, she pays tribute to its inventor, Frederick Banting, during a visit to his home in Canada. But she notes that insulindependent diabetics don’t live off a picnic. Many people without insurance can’t afford the thousands of dollars the drug costs annually, forcing some to economize and ration. And an incorrectly calculated or untimely dose can cause convulsions, unconsciousness and even death.
Despite advances in care, only about 20% of adults with type 1 are able to maintain healthy blood sugar levels, according to a 2019 study. At one point, Hepner woke up in the intensive care unit after her insulin pump failed.
“We have to stop trying to normalize this disease because let’s face it, having diabetes is not normal,” she said. “It’s the other pandemic that killed 6.7 million people worldwide last year.”
Despite their frustration, it would be inaccurate to describe Hepner and his film as pessimistic. Without wanting to give too much away, The Human Trial ends on a hopeful note. And despite a series of bankruptcy woes, ViaCyte managed to secure the funding to keep the lab’s lights on.
Then there’s more recent news that didn’t make it into the film. Last month, ViaCyte was acquired by Vertex, a rival biotechnology company that has developed its own stem cell treatment. This treatment showed early success and the company announced that a retired postal worker who had participated in clinical trials was cured of type 1 diabetes.
After hearing for almost a lifetime that a cure was coming, Aaron Kowalski, executive director of the Juvenile Diabetes Research Foundation, the world’s largest funder of type 1 research, is optimistic. A dozen drug companies are searching for a cure more than they were a decade ago, he said, and the organization plans to spend $100 million on cure research this year.
“It’s not a question of if it’s going to happen, it’s a question of when,” said Kowalski, who is a scientist and has had the disease like his younger brother since childhood. “Our job is to do it faster.”
To this day, he added, people with diabetes, both type 1 and type 2, could enjoy a little empathy and understanding.
Translation by Luis Roberto M. Gonçalves