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. They said to stay strong. Five years from now, a cure is near.
The cure has yet to arrive, and Ms. Hepner remains hobbled by her body's inability to makeinsulin, the sugar-regulating hormone She said that she might look fine to you, but she felt bad about it.
It can be hard for people with diabetes to stay well. There is round-the-clock monitoring of sugar levels; the constant, life-sustaininginsulin injections; and the possibility of losing a gangrenous limb to amputation.
The cure for Diabetes has become a joke in the community. What's taking so long if it's so close? Millions of us have perished.
Ms. Hepner followed the fortunes of ViaCyte, a small San Diego company working to create an artificial pancreas. The stem-cell-derived therapy would eliminate the pins and injections that circumscribe the lives of 1.5 million Americans with type 1 diabetes. A similar therapy is being developed by a Boston-based company.
The documentary she produced with her husband, Guy Mossman, called "The Human Trial," has made people with type 1 diabetes more aware of the disease.
UnlikeType 2, which tends to emerge slowly in adulthood and can sometimes be reversed early on with exercise and diet changes,Type 1 strikes without warning in childhood or adolescence.
Roughly 10% of those with diabetes are affected by type 1 A pancreas transplant can cure the disease, but donors are in short supply and the surgery carries significant risks. Only a small number of transplants are done in the US. To make sure the body doesn't reject the implanted pancreas, recipients have to take drugs for the rest of their lives.
Stem cells from humans offer the best hope for a cure. The ViaCyte executives constantly scrambling to raise the money needed to bring a new drug to market and the patients who volunteer for the clinical trials required by the Food and Drug Administration are both shown in "The Human Trial." The average cost is a billion dollars.
At a time when the public's perception of the pharmaceutical industry has been hurt by the high price of life-saving drugs, the film is noteworthy for its depiction of a company that is committed to helping humanity. Limits on the cost of diabetes drugs remain politically volatile. On Sunday, during a marathon vote on the Democrats' climate and health bill, Republicans forced the removal of a provision with a $35 cap oninsulin prices for patients with private insurance, though the cap remained in place for medicare patients.
The Human Trial, which can be viewed online, has become a rallying cry for Type 1 patients, many of whom believe only greater visibility can unleash the research dollars necessary to find a cure.
Those who have seen the film have been reassured by seeing their own struggles and dashed hopes reflected in the journeys of the film's two main subjects, Greg and Maren, who became among the first patients to have the experimental cell pouch implanted under their skin.
It can be difficult to watch the despair that drives them to become humans. The son of a man who had the disease went blind before he was 30 and died premature, grappling with the pain of diabetes related nerve damage. I don't like the smell ofinsulin needles. At one point in the film, Mr. Romero said he wanted the disease to go away.
Patients with type 1 can feel isolated because of flawed assumptions. Tim Hone, a medical writer in New York who has been living withType 1 since he was 15, said friends and acquaintances sometimes suggested that he was responsible for causing his illness. Mr. Hone has had people tell him that if he stopped eating candy he could reverse his disease.
People with Type 1 are often stigmatized. Todd Boudreaux said that he didn't tell friends about his illness because he wanted to feel normal at college.
"I didn't want to be defined by my illness, and I didn't want to be seen as weak, but having Type 1 does make you different and it's important that everyone around knows so they can help."
Even with her husband, Mr. Mossman, Ms Hepner has downplayed the disease. She recalled how confused he was when he woke up to find her drenched in sweat from low blood sugar. Mr. Mossman pressed her to make the film after learning about the disease.
Ms. Hepner was worried that she would be drawn to her health. She didn't want people to think that she wasn't thinking straight because her blood sugar was high.
Pink-ribbon breast cancer awareness campaigns and efforts to cure Alzheimer's made Ms. Hepner realize that many people who have it do not look sick.
She wants to change the perception that diabetes is a manageable illness, one that has been popularized by Big pharma's feel-good drug commercials that feature patients playing tennis and basketball and piloting hot air balloons.
According to the juvenile diabetes cure alliance, the industry spends a fraction of its research dollars on finding a cure, with the rest going towards developing medications and devices that make it easier to live with the disease.
There is a payoff from those investments. The need for self-administered finger-prick testing can be eliminated for those who can afford continuous glucose-monitoring devices.
At one point in the film, Ms. Hepner pays homage to the inventor of the device, Frederick Banting. She notes that diabetes is not something to be taken for granted. Many people who don't have insurance can't afford the thousands of dollars a year it costs to get the drug. A miscalculated or ill- timed dose can lead to death. According to a study, only 20% of adults with Type 1 can maintain healthy blood sugar levels. Ms. Hepner woke up after her pump malfunctioned.
She said that having diabetes isn't normal and that we need to stop trying to make it better. The other Pandemic killed over 6 million people last year.
Mr. Hepner and her film would not be described as pessimistic despite her frustration. At the risk of giving away too much, the end of "The Human Trial" is a hopeful one. ViaCyte was able to get funding to keep the lab lights on.
There was more recent news that did not make it into the movie. Last month, ViaCyte was acquired by a company that is developing a stem cell treatment. The company announced last year that a retired postal worker had been cured of type 1 diabetes after taking part in clinical trials.
The chief executive of the world's biggest funder of Type 1 research is optimistic after almost a lifetime of hearing about a cure. He said that the organization plans to spend $100 million on cure research this year, and that a dozen more drug companies are pursuing a cure. It isn't a matter of if this will happen, it's a matter of when. Our job is to make it happen quicker.
He said that until that day, people with diabetes, both Type 1 and Type 2, needed a little understanding.
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