A rallying cry for a cure
Documentary brings to life struggles of patients with Type 1 diabetes
In the three decades since she was first diagnosed with Type 1 diabetes, Lisa Hepner has clung to a vague promise she often heard from doctors convinced medical science was on the cusp of making her body whole again. “Stay strong,” they would say. “A cure is just five years away.”
But the cure has yet to arrive, and Hepner, 51, a filmmaker from LA, remains hobbled by her inability to make insulin, the sugar-regulating hormone produced by the pancreas. “I might look fine to you,” she said, “but I feel crappy 70% of the time.”
Staying healthy can be exhausting for many of the 37 million Americans with some form of diabetes. There’s the round-the-clock monitoring of sugar levels; the constant insulin injections; and the potential threats from diabetes’ complications: heart disease, blindness, kidney damage and the possibility of losing a gangrenous limb to amputation.
“‘The cure is five years away’ has become a joke in the diabetes community,” Hepner said. “If it’s so close, then what’s taking so long? And in the meantime, millions of us have died.”
That attenuated sense of hope drove Hepner to spend nearly a decade following ViaCyte, a San Diego biotech company working to create what would be an artificial pancreas. If successful, its stem-cell-derived therapy would eliminate the pinpricks and insulin injections that circumscribe the lives of the
1.5 million Americans with Type 1 diabetes. Vertex Pharmaceuticals,
a Boston biotech company developing a similar therapy, has already made significant headway.
“The Human Trial,” the documentary Hepner produced with husband
Guy Mossman, has electrified the diabetes community, especially those with Type
1, a disease the uninitiated often conflate with the more common Type 2.
Unlike Type 2, which tends to emerge in adulthood and can be reversed with exercise and dietary changes, Type 1 is an autoimmune disease that often strikes without warning in childhood or adolescence.
Type 1 is also far less prevalent, affecting roughly 10% of those with diabetes. A pancreas transplant can cure the disease, but donated organs are in short supply and the surgery carries substantial risks. To ensure the body does not reject the implanted pancreas, recipients must take immunosuppressant drugs all their lives, making them more susceptible to infections.
Therapies developed from human embryonic stem cells, many experts say, offer the best hope for a lasting cure. “The Human Trial” offers a rare glimpse into the complexities and challenges of developing new therapies — both for the patients who volunteer for the grueling clinical trials required by the Food and Drug Administration, and for the ViaCyte executives scrambling to raise the money needed to bring a new drug to market. The average cost, including the many failed trials along the way, is a billion dollars.
At a time when the soaring price of insulin and other life-sustaining drugs has
tarnished public perceptions of the pharmaceutical industry, the film is also noteworthy for its admiring portrayal of a biotech company whose executives and employees appear genuinely committed to helping humanity.
“The Human Trial,” which comes to streaming services in November, has become a rallying cry for Type 1 patients, many of whom believe greater visibility can unleash the dollars needed for a cure.
Those who have seen the film have also been fortified by seeing their own struggles reflected in the journeys of the film’s two main subjects, Greg Romero and Maren Badger, who became among the first patients to have the experimental cell pouches implanted under their skin.
The stigma often drives people with Type 1 to hide the disease. Hepner has spent much of her life downplaying the disease, even with her husband, Mossman. She recalled his confusion early in their relationship when he awoke to find her discombobulated
and drenched in sweat, the result of hypoglycemia, or low blood sugar. The more Mossman, a cinematographer, learned about the disease, the more he pressed her to make the film. Over time, the ubiquity of breast cancer awareness campaigns and highly publicized efforts to cure Alzheimer’s made Hepner realize her filmmaking skills could change perceptions of Type 1, a disease that is nearly invisible in part because many people who have it do not look sick.
She hopes to change other misperceptions, including the notion that diabetes is a relatively “manageable” illness, one that has been popularized by Big Pharma’s feel-good TV drug commercials that feature self-assured patients playing tennis and basketball.
The industry spends a fraction of its research dollars on finding a cure, with the rest directed toward developing medications and devices that make it easier to live with the disease, according to the Juvenile Diabetes Cure Alliance.
The payoff is undeniable.
For those who can afford them, continuous glucose-monitoring devices can obviate the need for finger-prick testing, and the machines can be paired with iPhone-size insulin pumps that eliminate much of the guesswork over dosing.
Hepner notes that insulin-dependent diabetes is no picnic. Many without insurance cannot afford the annual costs for the drug, forcing some to skimp and ration. And a miscalculated dose can lead to seizures, unconsciousness and even death. Even with all the advances in care, only about 20% of adults with Type 1 are able to maintain healthy blood sugar levels, according to a 2019 study. On one occasion, Hepner woke up in the ICU after her insulin pump failed.
“We need to stop trying to normalize this disease because, let’s face it, having diabetes isn’t normal,” she said. “It’s the other pandemic, one that killed 6.7 million people last year around the world.”