Lisa Hepner and her husband, Guy Mossman, co-produced and directed Trials in Humans, a documentary about people taking part in clinical trials to treat type 1 diabetes.Credit...Alex Wells The New York Times
In the three decades since she was first diagnosed with type 1 diabetes, Lisa Heppner has kept true to a vague promise she often heard from doctors who believed that medicine was on the verge of restoring her body to health. "Stay strong," they'll say. "It's only five years away from a cure."
But a cure is yet to come, and Ms. Heppner, a 51-year-old Los Angeles-based filmmaker, still suffers from her body's inability to produce insulin, the blood-sugar-regulating hormone produced by the pancreas. "You might think I'm fine," she said, "but 70 percent of the time I feel bad."
For many of the 37 million Americans with some form of diabetes, staying healthy can be stressful. There's 24-hour blood sugar monitoring; continuous life-sustaining insulin injections; and the potential dangers posed by complications of diabetes: heart disease, blindness, kidney damage and the possibility of losing a gangrenous limb to amputation.
"'It takes five years to heal' has become a running joke in the diabetes community," Ms Heppner said. "If it's so close, why did it take so long? Now we've got millions of deaths."
That sense of frustrated hope led Heppner to spend nearly a decade focusing on the fate of ViaCyte, a small San Diego-based biotech developing what is essentially an artificial pancreas. If successful, the stem cell-based therapy could eliminate the need for the needles and insulin injections that limit the lives of 1.5 million Americans with type 1 diabetes. Vertex Pharmaceuticals, a Boston-based biotech company that is developing similar treatments, has already done sosignificant progress has been made。
Her documentary "The Human Trial," which she produced with her husband Guy Mossman, has rocked the diabetes world, especially those with type 1, since it premiered in theaters in June, Laymen often mistake this disease for the more common type 2 diabetes.
Unlike type 2, which tends to develop slowly in adulthood and can sometimes be reversed early with exercise and dietary changes, type 1 is an autoimmune disease that often develops without warning in childhood or adolescence.
Type 1 diabetes is also less common, affecting about 10 percent of people with diabetes. Pancreas transplants can cure the disease, but donated organs are scarce and the procedure is risky. Most of the time, only a thousand transplants are performed in the United States. To ensure the body doesn't reject the implanted pancreas, recipients must take immunosuppressive drugs for life, making them more susceptible to infections.
Many experts believe that therapies developed from human embryonic stem cells offer the best hope for a permanent cure. "Human trials" offer a rare glimpse into the complexities and challenges of developing new treatments—whether it's for patients who volunteer to participate in the grueling clinical trials the FDA requires, or for ViaCyte executives who are constantly struggling to raise money to put new drugs on the table. Funding required to bring to market. Nowadaysaverage costIncluding many failed lawsuits along the way, the total was worth $1 billion.
The film also stands out for its admirable portrayal of a biotech company whose executives and employees Seems sincerely committed to helping humanity. (Limiting the cost of insulin remains politically contentious. On Sunday, in a marathon vote on Democrats' climate and health care legislation, RepublicansForcibly removedA provision caps insulin prices at $35 for patients with private insurance, but the cap remains in place for Medicare patients. )
"human process", which can also beview online, has become a rallying cry for Type 1 patients, many of whom believe that only increased visibility will free up the research money needed to find a cure.
Those who have seen the film also have the ability to see their own struggles and dashed hopes reflected in the journeys of the film's two protagonists, Greg Romero and Maren Badger, who were among the first to experience bringing experimental cells to life. One of the patients with a pouch implanted under the skin of the foot. .
The desperation that drives them to become human guinea pigs can be difficult to observe. Mr Romero's father, who also suffered from the disease, lost his sight before the age of 30 and died prematurely. Mr Romero himself faced vision loss while battling the pain of diabetes-related nerve damage. “I hate insulin needles, I hate the taste of insulin. I just want this disease to go away,” Mr. Romero, 48, says dazedly at one point in the film.
Type 1 can leave sufferers feeling alienated and alone, partly because of false assumptions about the disorder. Tim Hone, 30, a medical writer in New York who has had type 1 diabetes since he was 15, said friends and acquaintances sometimes believe he is responsible for his condition. "I've had people scolding me, saying if I diet and stop eating Snickers I'll be cured," Mr Horne said.
This stigma often drives Type 1 patients to conceal the disease. Todd Boudreaux said he avoided telling friends about his condition in order to feel "normal" in college, a decision that could have dangerous consequences during episodes caused by hypoglycemia.
"I don't want to be defined by my condition or seen as weak, but type 1 makes you special and it's important to let everyone around you know that so if you have a severe high fever, they can provide Help "sugar," said Mr. Boudreaux, 35, who lives in Monterey, Calif., and works for the nonprofit Beyond Type 1.
Ms. Heppner has spent much of her life downplaying the disease, even to her husband, Mossman. She recalls his confusion early in their relationship, when he woke up to find her confused and sweaty, the result of low blood sugar. The more cinematographer Mr. Mossman learned about the disease, the more strongly he urged her to make the film.
For years, Ms. Heppner remained steadfast, concerned that her health would draw unwanted attention. "It's a competitive world, and I just don't want people to say, 'Oh, she's not thinking clearly because her blood sugar is high,'" she said.
But over time, with ubiquitous breast cancer awareness campaigns and highly publicized efforts to cure Alzheimer's, Ms. Heppner realized that her skills as a filmmaker could change the public's perception of The perception of Type 1 disease, which is almost invisible, is partly because it affects so many people not to make it look sick.
She hopes to change other misconceptions, including the idea that diabetes is a relatively innocuous and "manageable" disease popularized by Big Pharma's TV commercials for feel-good drugs featuring confident patients playing tennis , basketball and flying a hot air balloon.
In fact, according to the Juvenile Diabetes Cure Alliance, the industry spends a small portion of research dollars on finding treatments and the rest on developing drugs and devices that make living with the disease easier for patients.
The benefits of these investments are undeniable. For those who can afford it, continuous glucose monitoring devices could eliminate the need for self-administered fingerprint tests, and the devices can be paired with iPhone-sized insulin pumps, taking much of the guesswork out of dosing.
Ms. Heppner knows the wonders of insulin well: at one point in the film, she pays homage to its inventor, Frederick Banting, at his home in Canada. However, insulin-dependent diabetes is not easy, she noted. Many uninsured cannot afford thousands of dollars in annual drug bills, forcing some to economize and ration. Miscalculated or inappropriate doses can cause seizures, coma, and even death. Despite advances in care, only about 20 percent of adults with type 1 are able to maintain healthy blood sugar levels.According to a 2019 study. At one point, Ms. Heppner 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, diabetes is not normal," she said. "This is another epidemic that killed 6.7 million people worldwide last year."
Despite her dismay, it would be a mistake to describe Mr. Heppner and her film as gloomy. At the risk of giving away too much, "Body Trial" ends on a hopeful note. Despite several near-bankruptcies, ViaCyte has managed to raise capital to keep the lab afloat.
There's also some recent news that didn't make it into the movie. Last month, ViaCyte was acquired by Vertex, a biotech that is developing its own stem cell therapy. This treatment has been shownearly success, the company announced last year that a retired postal worker who participated in a clinical trial had been cured of type 1 diabetes.
Postdoc Aaron Kowalski is executive director of the Juvenile Diabetes Research Foundation (JDRF), the world's largest funder of type 1 diabetes research. He described himself as an optimist after hearing he was on the verge of being cured for most of his life. A dozen more pharmaceutical companies are finding treatments than a decade ago, and the group plans to spend $100 million this year on research into treatments, he said. "The question is not if this will happen, but when," said Dr. Kowalski, a scientist, suffered from the disease as a child, as did his younger brother. "Our job is to make sure it goes faster."
To this day, people with both type 1 and type 2 diabetes need a little empathy and understanding, he added.
Andrew Jacobsis a health and science reporter based in New York. Previously, he has reported from Beijing and Brazil, as a reporter for Metro, a Styles contributor and a national correspondent covering the American South. More About Andrew Jacobs
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