The Human Trial is one of those rare amazing documentaries that can change the way you think about the world. The film which was directed by Canadian Lisa Hepner and Director of Photography Guy Mossman provide unprecedented, real-time access to a radical stem cell treatment for diabetes that could help save millions of lives. The film will premiere just ahead of National Diabetes Month in November.
In 2011, Lisa and her husband Guy heard about a radical stem cell treatment that could help prevent the deadly disease. Driven by a desire to cure Lisa of her own type 1 diabetes (T1D), the filmmakers were given access to a clinical trial — only the sixth-ever embryonic stem cell trial in the world. What followed was an intimate decade-long journey with the patients and scientists who put themselves on the line to be first.
Recently Hollywood North Magazine had the chance to chat with the husband and wife filmmaking team over a zoom call.
LISA: I’m Canadian, my friend. I grew up in Ottawa, and then different places. My dad was a Canadian diplomat but I ended up in New York then LA.
GUY: but, you went to U of T Lise.
LISA: Yeah I went to Victoria College. U of T has been really supportive of my endeavours.
HN: The movie starts off with you (Lise) and you’re talking about how you have Type 1 diabetes?
LISA: I’ve had type 1 diabetes for 32 years and it’s been a bit of a rough go. Most people don’t understand because they just see me as a healthy person. They don’t understand what’s happening beneath this facade. So, I have long term complications in the like with my eyes and feet because of neuropathy. I’ve been told since my diagnosis in 1991 that the cure was five year away and this is something which is a cliche in the diabetes world. You ask anyone who’s been diagnosed with diabetes and their endocrinologist or whomever will say just keep good care of yourself and they’ll be a cure within five years. Well, I’ve been waiting for 31 years. The wait has helped to motivate the making of this film.
HN: I usually ask filmmakers what motivated them to make…
LISA:..I can ever be more specific than that. It’s Guy…
GUY:…Yes, I am to blame. I’m the one who entered into this relationship ignorant and blissful and within a few months of dating Lise, I realized she was living with something I knew nothing about. As filmmakers I sort of turned to Lisa and said we’ve got to tell a story. We’ve got to do something and put our super powers to work in a way that’s personal and meaningful. Little did we know the film would be ten years in the making. We didn’t know what the film was going to be. We had different iterations and different sort of false starts, and then we ended up landing on this story line with ViaCyte.
Note***ViaCyte is a regenerative medicine company focused on delivering novel stem cell-derived cell replacement therapies as a functional cure for all type 1 diabetes.
LISA: I remember waking up one morning in Brooklyn when I was just engaged to Guy. I was in a pool of sweat and confused. Guy was like what the hell? And it was a hypoglycaemic episode when my sugar goes low and if you don’t take care of it it can be fatal. Ultimately I was fine but Guy was definitely not traumatized but more intrigued and said we should do something (referring to making a movie)
GUY: That’s an interesting way to put it. (overlapping) You make it sound like I was bemused.
LISA: (overlapping) like a fly on the wall.
GUY: Bemused or somehow…. (serious) I was alarmed, of course.
LISA: You were alarmed. Yes, that’s the word. But I think as a documentary filmmaker our antennas are always out for a good story. It’s just that your good story was sleeping beside you.
HN: Was this your first time working together?
GUY: We’ve done short stuff in the commercial realm, branded content but nothing like this.
LISA: It was a huge endeavour to follow a clinical trial in real time and it was a breakthrough clinical trial- a groundbreaking drug or I should say device using stem cells. We had no idea if it would work. We had no idea what act three was. The fundraising for a film like this that’s a very true story about science, most funders are like is it going to work and we’re like we don’t know, we’re following it. It made funders who are risk averse think come back to me when act 3 is done. It was stressful raising funds for this film.
HN: What you both did is pretty amazing. You got access to a clinical trial for a device they’d been trying to get off the ground for 15 years. Walk me through how you became part of this?
LISA: Pure determination and stubbornness. That’s what we did because the CEO of ViaCyte didn’t want us to film at first. It took us a year to get access. Imagine if you were the CEO of this company that was doing this experimental trial and here you are allowing a documentary film crew in. We could have filmed proprietary information, which could jeopardize the trial, so there had to be a lot of faith and trust. Maybe it was the persistence and the fact I have type 1. We were the ones to tell the story. There hasn’t been a story about this step child disease. This is a step child disease. The red headed step child. People don’t give a shit about it to be honest. People don’t think it’s a big deal but it is a big deal. People are dying from it left, right and centre. 6.7 million people died from it last year! That’s a lot of people!
HN: Why don’t people care?
LISA: Because the messaging around this disease is to inject insulin, and everything is fine. We’re getting this messaging from the people who sell us the products. The people that are beaming commercials into our living rooms. It’s also the patient’s responsibility like me. I can hide behind it anytime I want. You don’t have to see what I’m attached to. If I just want to go on the film set and not have this disease showing I can. It’s the ambivalence around this disease messaging that influences the general public not to take it seriously. The irony is so many people are touched by it. They have friends who have diabetes. Everyone is touched by it, right? They say oh my great Aunt had it and she’s doing fine or my Uncle had it. He didn’t do so well, he died at 50. They might take it more seriously but there’s a lot of ignorance around the disease.
HN: I have family with type 1. No one’s died yet but they have had problems.
LISA: When we started making this film we were all about diabetes awareness but then we realized there was a much larger story about what it takes to innovate medicine… innovate cure and vaccines. What we realized is Guy and I were so ignorant walking into a clinical trial. I din’t even know how many phases there were in a clinical trial. We realized this is also about the importance of science and belief in science. You know, science is working. What we followed is working. The year and a half since we finished this film there have already been a lot more strides. In America half the people may not believe in Science.
HN: Did you see the series on Disney Plus with Amanda Siegfried? Your movie sort of reminded me of that from the commerce point of view and how eventually her character becomes so frustrated that their machines didn’t work, she falsified all of the results.
LISA: I loved that show.
GUY: They were talking about Elizabeth Holmes the CEO of Theranos. When I watched it I called up my associate producer and said you’ve got to watch this. This is speaking directly to our film. Do these small companies need to embellish results to keep going to prove the validity of their results? The answer is they shouldn’t have to embellish anything. There should be enough funding to go around so they don’t have to rely on hyperbole.
HN: Early on we meet patient 1. Her story was so touching and I believe the audience will care so much about her. What was that like, that journey with her?
LISA: We were very lucky to meet Maren Badger. We had no say in the casting of the patients. We literally won the jackpot with them. We met her a week before she was contemplating the trial in Minneapolis. I could tell she was fierce and strong, She’d been involved in clinical trials previously. But I had no idea how much of a warrior she is. I had no idea she’d do this clinical trial, then go and try to get a pancreas transplant when it didn’t work. She’s right now on the pancreas transplant list. She is one fierce, courageous person who gives a lot back with the kids that she’s adopted. She’s an amazing woman. We really got to know her, filming in her house for a year and a half. Her family is great. We got close to the kids too.
GUY: they’re great. The kids were really into filmmaking. Maren and her husband were very accommodating. Maren is a consummate manager. She’s juggling like 7 balls at once. At one time she’s dehydrating food in the basement at the same time she’s taking care of six kids and she’s got a bunch of cookies baking. She’s helping out at the PTA. She’s incredibly spread thin and on top of that she’s got this condition. The way she cares for herself is methodical. She’s got a lot of routines. In comparison to be patient #2, Greg. He has a different relationship to his diabetes.
LISA: I think with Maren it was hard at first to penetrate that outside person and overtime she became vulnerable with us and that was heartening. We were grateful to her for that.
HN: She was convinced this procedure was working at times. She says, “This has to be working or this wouldn’t be happening.” She became very excited. Was it hard to explain you couldn’t tell her what the researchers were really finding out? How did you feel about the fact she thought it’s working but this wasn’t necessarily what was happening?
LISA: It was really tough. You’re absolutely right because we had privileged information and she was so hopeful about these cells. We knew a few weeks later that maybe if there was no improvement she’d be removed from the trial. How did we handle that? I think this is when you put your filmmaker hat on and you’re like we have to stick to the story line. Guy and I both just wanted to give her a hug. We couldn’t let those emotions impact how we filmed the story. We knew we couldn’t reveal anything or protect them from the truth. That’s not our job.
HN: She was feeling really good- nothing was working.
LISA: Good question. She did actually have some viable clumps of cells. Researchers only found that out after the fact. When Maren found that she did have some viable clumps of cells after she’d been removed from the study, it made her feel less crazy. She felt that she was crazy. She felt like she was insane because she thought something was happening and was told it wasn’t happening.
HN: What are viable clumps?
LISA: It means some of the cells were actually working. They were never producing insulin but they were surviving.
HN: So she did have some positive effects?
LISA: It was probably more of a placebo effect.
HN: But enough to move the company to the next stage of funding?
LISA: You’re right. From each patient they learn something and they tweak it. From each patient even if they’re so called ejected from the trial, they contributed something to the next phase which will hopefully perfect the product.
HN: Patient #2 seemed in much worse condition. It had been a real battle for him to care of himself. How difficult was it following his journey?
LISA: Greg is a beautiful soul. Hats off to him for being alive today because he had no care. He had no family support. He couldn’t afford insulin. Literally, He’d get his sugar so high, he’d almost be in a coma and go to the hospital in Minneapolis, and be given a vial of insulin that would last him a month. That’s how he sometimes managed his disease and it’s through no fault of his own. 1 out of every 4 Americans ration insulin and they bus to Canadian border cities to go buy insulin.
HN: As a Canadian I understand the whole insurance thing. So in the US insulin is at a premium and it costs a lot of money?
LISA: Correct. There has been legislation. It has been addressed somewhat. Anyone on Medicaid in the US only has to pay $32.00 for a vial of insulin. Congress just passed that. What they didn’t pass was an insulin price cap for people who have insurance. It’s still unattainable for many people.
GUY: What about those who don’t have insurance?
LISA: That’s what I’m saying. If you don’t have medicaid, you literally go to facebook and you post- I’m about to run out of my insulin. Can you help me? I’m not kidding. There are posts like that.
HN: What do people do? They go into comas? They go into shock?
LISA: Yes. Yes. People,
GUY: They die.
LISA: I just want to say it’s more in the developing world. People in America are most definitely dying of this disease. If you don’t have access to insulin you’ll be dead within 96 hours. It is a travesty!
HN: So everyone with type 1 that can’t afford insulin needs to move to Canada?
LISA: There are some resources but you need to know how to work the system. You can write to the pharmaceutical company. You can make a case for need. There are outlets to get medical expenses covered but you’re right people are going bankrupt and people are dying.
HN: Back to patient 2. He said he was going blind, had all sorts of problems and clearly the trial wasn’t working for him. He came into the study in a bad way. It must have been so difficult to watch everything happen to him.
LISA: It was pretty devastating. But I think it was more devastating when we stopped filming because then we had time to think about it. He was really depressed after he was removed from the trial. He was already suffering from depression and anxiety due to type 1 diabetes. His eye sight is degenerative. It isn’t going to come back. He’s had three operations since we stopped filming to keep his eye sight going but he’s going blind.
HN: Both subject 1 and 2 talked about times in their lives when they didn’t take care of themselves? I mean you have type 1. It must be an ongoing battle?
LISA: The frustration level is huge. You can look at your blood sugar every moment and go I’m fucking it up…I’m not getting it right…There’s this instant feedback…there’s this instant loop that you’re making a mistake. The thing is to ask a person to be a perfect pancreas you gotta be kidding. Until something goes wrong you don’t realize how much your health is impacted. I call it the ugly organ.. Having to inject my own insulin is really, really challenging in having to get it right and nobody gets it right- trust me. Even the most perfect type A diabetics will have low blood sugars. The truth is nobody gets it right because you can’t. Then we shame those who don’t get it right.
HN: In one of the patients the stem cells start to work?
LISA: When we were filming it was working in nine patients. 9 patients were getting insulin produced from the implant.
HN: That’s fantastic. Will this improve their lives or do they know?
LISA: It’s a good question. We don’t know. It’s a critical trial. We don’t know how long the cells will last. The estimate is a year then you go and get another implant but this is all trial and error. The people are still on insulin just a lot less. This type of protocol is being tested all over the world now. There has been phenomenal success. Patient 1 out of the Harvard lab didn’t require any insulin. The protocol worked for the guy. It was on the cover of the N.Y Times. He was a postal worker and he’s still off insulin. They know the protocol works. It may not have worked for ViaCyte but it is working with other labs.
HN: What are the plans for the film?
LISA: We have a tvod release on November 11, apple +, Google Play and Amazon. (in the US) We’re talking to broadcasters around the world and showing the film everywhere.
Speaking with Lise and Guy was a tremendous gift. Both are knowledgeable filmmakers but more importantly they are incredible people who are trying to make a difference in a world that can be very unfair.