Documenting the Quest for a Diabetes Cure: An Interview With Filmmaker Lisa Hepner

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Lisa Hepner has had type 1 diabetes for 20 years. She’s been a successful documentary filmmaker for over 17 years, and her current project, Patient 13, which she’s co-directing with her husband Guy Mossman, is her most personal work to date.

Patient 13 is a feature documentary about the race to cure type 1 diabetes, an autoimmune disease in which the body’s own cells attack and kill the insulin-producing cells in the pancreas. The film  follows Scott King – scientist, entrepreneur and type 1 diabetic – at the climax of his 30-year quest to cure the disease he and millions of others battle every second of the day.

 

Scott and his team are working on a device called the Islet Sheet.  The Islet Sheet, a form of islet cell transplant, encapsulates islet cells in a device that looks like a transparent business card.  In this device/sheet, the encapsulated cells are protected from the patient’s immune system, while the islets are still able to receive the nutrients they need to survive and produce insulin.  If the Islet Sheet is successful, it will provide stable blood glucose levels for insulin-dependent diabetics without the use of immunosuppressant drugs or injected insulin.  In other words, it would cure type 1 diabetes.

While compelling documentary films have been made about many conditions, this is the first significant documentary film project about diabetes.  Lisa and Guy believe it has the potential to help diabetes gain the level of awareness and visibility that it demands, and they’ve started a campaign on Kickstarter, a funding platform for creative projects, to help them launch the film.

I was delighted to have the opportunity to talk to Lisa about Patient 13.  To me, her project already feels very much alive.  It’s got built-in suspense because like everyone with type 1 diabetes, I’m sitting on the edge of my seat waiting for a cure, and hoping with all my might that the Islet Sheet works.  I can’t think of better material for a film, and with Lisa’s skill, talent and personal insight into diabetes, I don’t think she can go wrong.

How has diabetes affected your career as a filmmaker?

Interesting question. I think it’s actually driven me to succeed in this very tough world of indy filmmaking. When I was diagnosed at 21 while studying at the University of Edinburgh, I didn’t know what was in store for me. My Scottish doctors were ambivalent about the disease — on the one hand, they said it was the leading cause of amputation in Britain. On the other, they saw me as this healthy Canadian who could live a full life with this disease. As it is with life, the truth lay somewhere in between.

The shades of grey motivated me to make documentaries. I was going to be a lawyer, a safer career choice, and pursue journalism on the side. But when I got my diagnosis at 21, I thought, life is short. Life has no definitive path. I have to pursue what I really want to do, and that is telling people’s stories. So it definitely affected my career choice.

In terms of tangibles…. did I go hypo or hyper on the job? Did I forget my insulin supplies and get stranded in an exotic country? Yes to both. I never wanted my diabetes to get in the way of my goal to be a globetrotting producer, but if I were to be honest, I’d have to say that sometimes it did. I’ve had to work extra hard to have the energy for those uber-long shoot days with few breaks. But it just spurred me on to overcome this invisible handicap.

Lisa and Guy on set

What led you to this project?

It was a bit of a circuitous path. My DP (Director of Photography) husband, Guy, and I had just survived a night of hypos when Guy looked at me and said, “Let’s make a film about diabetes.” I wasn’t convinced as I didn’t want to focus a film on a condition that I was already tired of, but then Guy made me realize that it was an important film to make, especially since there didn’t seem to be a good film out there about the disease. We started down a path looking for good story ideas about diabetes, and after a few misfires, we found this story, Patient 13.

When did you learn about Scott King and his research?

I learned about Scott King as we share the same endocrinologist at UCLA, Dr. Andrew Drexler, as well as the same CDE, Carolyn Robertson. Dr. Drexler knew that I was looking for a film about the quest to cure type 1, and he said to me during one of my appointments, “Hey, you should meet Scott King. He’s cured diabetes in rats.” I got goosebumps, and then when I met Scott, I realized we were onto something good.

Scott wants to be Patient 13, the 13th patient to participate in his own clinical trial.  What can you tell us about patients 1-12? Have they already been selected?

Scott King

The genesis of the title Patient 13 came from a story that Scott related to me. Scott has always wanted to be in his own clinical trial, so he asked a UC Davis scientist about doing so. The scientist said that he should be Patient 13 so he could monitor the first 12 patients with the help of his team, and then be the 13th patient once he and his crew felt the study was properly underway. Scott needed to be present during the first 12 patients, and not worried about the efficacy of the transplant on himself.

Regarding patients 1-12…. The Islet Sheet has not gone to clinical (human) trial yet. It has been approved for large animal studies (canine) at the prestigious diabetes research center at Cedars-Sinai in LA, and then pending that outcome, it will go to human trial. Because it takes a while to get FDA approval in the US, the Islet Sheet team may go to Oxford, UK where they’ve been told if the canine trials are a success, a human trial can be done there.

You say the results of the Islet Sheet transplant – if it works – are immediate.  Have animal studies shown this?

Much like the Edmonton Protocol, Dr. Jonathan Lakey predicts that patients will go off about half of their regular insulin dose. Then they will be closely monitored and hopefully be 100% off insulin in 3-4 months. This theory is based on the animal testing the team has done in the US and Canada.

 Assuming (and hoping!) that you reach your funding goal, how long do you think it will be before Patient 13 will be completed?

ISLET SheetIt all depends when the Islet Sheet team led by Scott King gets to human trial. We are hoping they get the green light either here in the US, or abroad, by 2012. We will then edit the film for about 6 months, and be ready to release it in Fall of 2013. Following a longitudinal story like this — a story that’s happening in real time — takes patience but usually the best documentaries are made this way.

There are so many unknowns about the islet sheet. Is it difficult to embark on a film project that might not have a happy ending?

Great question. We don’t know what will happen. But the joy of making a documentary is that we don’t have to have a “Disney” ending where people are cured and ride off into the sunset. The film is about the journey of trying to alleviate people’s suffering while striving to leave a mark in medical history. We will show what it’s like to live with diabetes whether or not Scott and his crew actually cure the disease. And because of my own diabetes, we won’t be sugarcoating the reality of living with this really annoying and demanding disease. The author Dan Hurley got it right when he compared having type 1 diabetes to “living with a crying baby that just won’t stop crying.”

 What are your hopes for the film overall?  

Guy Lisa JDRF walkWe hope Patient 13 will raise awareness around a disease that many people have heard of but few people understand. Diabetes is everywhere, and it’s called an epidemic, but there’s very little knowledge of what it’s like to live with this demanding disease.

Our marketing and distribution priorities for Patient 13 are to reach general audiences worldwide through theatrical screenings, television broadcasts, and educational showings in schools, hospitals, and NGOs.  We want the film to be entertaining cinema as well as a tool to raise awareness about diabetes and diabetes research. Already there seems to be a huge audience hungry for a film like this.

Please visit Kickstarter to learn more about Patient 13 and donations.

 To learn more about the Islet Sheet check out Elizabeth Snouffer’s interview with Scott King.

For more on the Edmonton Protocol see Jessica Apple’s essay, The Search for A Sweet Solution.

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Jasmine
Jasmine

Once Islet Sheets are available to the general population, how much will the treatment cost? How will people with diabetes be able to afford this treatment?

kathy

The islet sheet research is something that I have been following for awhile now.  It seems a likely next chapter to islet cell transplants in that pig or stem cells could be used as an endless supply of islets.  I would enjoy watching the progress of Scott King in real time and will be waiting for the release of this amazing documentary.  And if they are looking for volunteers for patients 1 to 12…..let me know!

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