Filmmakers Lisa Hepner and her husband, Guy Mossman, are on a mission to bring the story of diabetes and the quest to find a cure to the silver screen. For Lisa, it’s not just professional — it’s personal. Lisa was diagnosed with type 1 diabetes 20 years ago while in college and has worked for the past 15 years producing documentaries for the likes of Discovery Channel, TLC, MTV and PBS. Now she wants to highlight the struggles of living with the disease while showcasing some breakthrough research in a new documentary called Patient 13.
Her story focuses on Scott King (no relation to the former Diabetes Health editor), who is a type 1 diabetic, researcher and biotech engineer in San Francisco. Scott, along with his team at Cerco Medical, and Dr. Jonathan Lakey, one of the original scientists of the breakthrough Edmonton Protocol, have developed an innovative way to protect islet cells from becoming damaged or killed off during transplantation. The method uses a small, thin sheet of islet cells with a protective membrane to keep the immune system from attacking the cells, but still allows the insulin to pass into the bloodstream. The research is about to enter the final phase of clinical trials, and if successful, is projected to enter the human trials phase sometime next year in Europe.
Lisa and her husband will be trailing Scott and his team throughout the whole process, but they need our help! The documentary is in desperate need of financial support and they’re asking us — the diabetes community — to help fund the project. To find out more about the film, the story behind its name, and Scott’s research, we spoke with Lisa last week:
DM) You are quite an accomplished documentary filmmaker. What made you want to take on this as-yet-unfunded diabetes project?
LH) We’re following an incredible story with very high stakes, and we also have an opportunity to shine a light on life with diabetes. The elevator pitch explanation is that essentially we are following one man’s quest to cure diabetes.
Scott King has had diabetes for 30 years and has been working on curing diabetes since he was a student at Harvard. After graduation, he worked on Wall Street, and while there, he wrote a paper that analyzed the economic feasibility of curing diabetes. It was the first paper of its kind. What he predicted was that there would be a cure, and it would come from islet cell transplants.
Fast forward to 2011. Now, this prediction might be coming true. What we’re doing is following his journey and his team’s journey. But it’s not just about Scott. It’s about Dr. Jonathan Lakey and two of their scientists, too. We’re following this crew at a very important juncture in their lives when all of their research is being put to the test. Is this going to work? These guys are onto something that could be really big!
In about a month, canine trials begin at Cedar Sinai hospital in Los Angeles. If the dog trial works, they’ll go to human trials. Then we’ll be follow people as they want to get into the trial.
It gives us — as storytellers — an opportunity to pull back the curtain on what it’s like to live with diabetes. We’re stepping in with this narrative arc, showing what it’s really like to live with type 1 diabetes.
So many hopes for a cure… Do you really believe this one is “it”?
Diabetes is quite complicated and a lot of people have been working on this for years. Because scientific innovation — especially medical innovation — takes so long to get to the bedside, we can forget that this disease is even curable. This may not cure diabetes, but it may be the best treatment out there.
What exactly does the title “Patient 13″ mean?
Scott King wants to be the 13th patient in his own trial. He spoke to a peer of his at UC Davis about being in the trial, and his friend said that you shouldn’t be in the first 12; you should first be present to see how the trials are doing in the others. You should know that the people in the trial are flourishing.
Other researchers are trying to protect islet cells as well. What’s unique about the research that Scott and his team are doing?
It’s an islet cell transplant that doesn’t need anti-rejection drugs. That’s the critical key. They have created an islet sheet that is micro-thin, it’s the size of a small credit card. It would be transplanted into the wall of your abdomen, or possibly the pancreas or liver. What’s great is that the protection around the sheet is porous enough for the insulin to go out, but thick enough to keep the immune system from destroying the beta cell. The sheet is put it through laparoscopic surgery and if the sheet somehow causes issues, it can easily be taken out, unlike the other encapsulated technology.
How did you get involved with Scott and his team?
We actually have the same endocrinologist at UCLA, Dr. Andrew Drexler. He knew I was looking for a good story to tell about diabetes, and he knew I wanted to do a profile on the search for the cure. I’d looked at the Artificial Pancreas and also other biological cures. He said, “You should talk to Scott King. He’s cured diabetes in rats.”
What will happen if the scientists aren’t successful? Don’t you have a lot riding on them curing these dogs?
We’re less concerned about this being a huge success, and more about the story. We don’t need a Disney ending. As a filmmaker, what happens, happens. We’re going to learn a lot on this journey.
The way we’re filming the documentary is called “vérité filmmaking.” We’re essentially flies on the wall, following the action. We’ll be velcroed to Scott King. We’ll watch him test like a maniac. We’ll shoot him when he goes for treatment for his diabetic retinopathy. We’ll follow people who are signing up for the human trials. We really want to capture the exterior and interior monologue of living with this disease.
Besides the hope for a cure (God willing!), what is it about this story that intrigues you so much?
It’s a universal journey of wanting to make it, but the stakes are huge. The stakes could change medical history. So the potential is intriguing to me. But even just the journey of these guys is intriguing. They’ve been doing this for 30 years. This is a culmination of all their work. I can relate to their working up and working forward.
They could actually end suffering for millions of people. And the other aspect, in terms of diabetes awareness, is that people don’t understand how demanding this disease is. How costly, demanding, and debilitating it is.
We’re looking at Fall 2013, which seems far away, but we’re following what’s happening in real time. If the dog trials start in a month, then the human trials wouldn’t start until mid-2012. Then we’ll edit and do post-production on the film. We do want to send it to Sundance, and we do want to do the whole festival circuit. We would love to do a theatrical release with a major broadcaster, like HBO, which is a huge supporter of documentaries.
We also want to get it into hospitals or even in the diagnosis kits given to patients. We want to really have a big education outreach. We’re working with a strategist on what kind of tangible outreach we could do. When the lights go up after a documentary, people feel inspired that they can do something. We want to heighten awareness of what this disease is and raise more money for more advances. If the islet sheet works and this protocol works, we still need to find a source of these cells, like xenotransplants.
The response we’ve had so far as been great. People are hungry for a movie like this. And I want to tell this story. Our story of diabetes will continue and we just want people to be part of it.
But in order to get this off the ground, you need to raise a lot of money, right? How is that going?
Right now we’re using Kickstarter, which is an online platform to raise money in a short period of time. On Nov. 3, we launched a 30-day campaign to raise $30,000. If we don’t raise all the money by Dec. 2, we don’t get any of the pledges! It’s a real incentive and motivator to raise that money.
We started filming in 2010 and have been filming sporadically. We want to be able to follow the action of the canine trials when they start in a month. Dogs are a great model for diabetic humans. If it works in dogs, there’s a 99% chance it will work in humans. We want to be there when dog #3 goes three months without insulin.
On the fundraising, how far do you still have to go?
We’re at $27,000 and we have 11 days to go. This is what I want to stress about Kickstarter. It’s all about the $10 donation. If 500 of your readers donated $5, that’s $5,000! No matter how big or small, every donation matters.
Plus people who back the project with pledges will get certain premium prizes, depending on the amount. For instance, $25 will get you a complimentary copy of the Patient 13 DVD. $75 will get you an autographed copy of Dan Hurley’s book, Diabetes Rising. $1,000 or more will get you two tickets to the premiere screening, and $5,000 will get you lunch with Scott King and Jonathan Lakey!
If we don’t reach our goal, we don’t get anything.
Besides this particular project, has your own life with diabetes influenced your work as documentary filmmaker?
It definitely influenced what I did with my life. I was diagnosed with type 1 diabetes when I was 21 and studying abroad in Edinburgh. I wasn’t hospitalized, I was just sent home with my syringes. And that’s when my diabetes education began.
Life’s really short and there’s no straight path. What was I going to do with that info? I had originally planned to go to law school after college, but I was being exposed to all these interesting stories living in Scotland. My passion was actually being a journalist.
When I got my diagnosis, I realized that I had to follow my passion. I realized I could be dead in a week without insulin. I thought, ‘Don’t waffle, Lisa, choose what you really want to do.’ And that’s how I started in on this big adventure. When I graduated from University of Toronto, I worked in radio for a bit, and then I got my first job in documentary filmmaking at 23. I’ve been working in the industry ever since.
Lisa and her husband really need our support to get this film off the ground. Support Patient 13 by watching the trailer and donating to their Kickstarter campaign now!