Despite its grim title, “Pay or Die” could promise a happy ending when it premiered at South By Southwest in March when only a week before its bow, Eli Lilly volunteered to cap the cost of insulin at $35, though of course there was nothing really voluntary about it. Pressure from lawmakers to curb price gouging was the result of even more being applied to them by constituents concerned about the diabetes medication and while the gesture meant a number of lives would be spared immediately when it takes so little time off the drug for someone to suffer the consequences, it was a cold comfort to those who already lost loved ones waiting for a more affordable prescription and for the fact that Eli Lilly and their two competitors Sanofi and Novo Nordisk have the ability to set their own market, having a monopoly over it.
Still, Scott Alexander Ruderman and Rachael Dyer capture a victory while preaching constant vigilance in their urgent doc, though as “Pay or Die” shows that comes naturally to those who have had to watch their blood sugar levels since birth as type one diabetics or developed type two diabetes later in life. Filmed over three years, the documentary looks on as Nicole and James Holt, the parents of Alec Holt, pursue of new laws in their home state of Minnesota that would prevent drug makers from charging exorbitant prices in the wake of the tragic death of their son, who had to parse out his insulin when regularly recommended amounts would cost way too much for him to afford, and gives a full picture of the stress it induces within families that have to make difficult choices each month when insulin takes priority over all else in their budget by also following Cara, who only receives her type-1 diagnosis around the start of COVID and struggles with no insurance to start proper medication, and Sandra and her daughter Emma, who have to dangerously ration their insulin as Alec once did to stave off homelessness.
While Ruderman and Dyer present desperate situations, they leave the room for hope and the film becomes a galvanizing example of grassroots organization to force the powers that be to rethink their relationship to the public they serve. With “Pay or Die” now streaming on Paramount+, the filmmakers spoke about the personal experience that led them to devote time to the project, showing the myriad issues created by making insulin so unreasonably expensive and bringing attention to them as a pivotal election year begins.
How did this come about?
Scott Alexander Ruderman: I live with type one diabetes, and Rachel has covered stories in her previous career as a journalist about medical refugees, so when we were discussing the idea, we both had an interest in it, but it really wasn’t until we actually experienced the situation firsthand that we said, “Okay, we need to make a film about this.”
Rachael Dyer: And I’m half-Australian and half-Canadian, so I had said to Scott, “Why don’t we go up to Canada and have that experience of purchasing his medicine in another country?” which so many Americans unfortunately have to — travel across borders to go and get their life-saving medication, with this term known as “medical refugees.” Scott and I went to Canada to go and experience that firsthand, and we went into a pharmacy [where] Scott bought his insulin and it was just so heart-wrenching to watch him break down and get so upset because as he likes to say, he felt accepted for the first time in a country that wasn’t his own. At the time, [insulin] was $19 Canadian whereas here it was well over $300 American and [that] vial of insulin keeps him and type one diabetics alive for approximately two-and-a-half weeks, so that was the catalyst of us wanting to go and do more. We came back [to the U.S.], did a lot of research, and unfortunately there were just so many people who were struggling to afford the insulin and we had so many people reach out to us with their stories, so that’s really what got the ball rolling.
Alec Holt’s story really becomes an anchor. What led you to his parents?
Scott Alexander Ruderman: Alec’s story has become the poster child of the insulin affordability issue in America. His mother Nicole Smith Holt and father James Holt Jr. really have taken a stance in the state of Minnesota to bring this to light, that this is not okay, and following their story over three years became a backbone as they fight to pass a bill named after Alec for emergency access to insulin, so they can go and apply and get approved and get insulin in a matter of time [when as] a type one, without it, you’re dead in about three days. It is life-saving medication. And it was not only just fighting with policymakers and trade lobbyists, but also the human toll it took on them and how it’s affected their life and their family, so one of the things wanted when we made this film was for it not just to just be a broad topic about this issue, but to really hone in on the human stories and we spent a lot of time with Nicole over the years, to see the different emotions that she went through and that James went through and how they’ve become this sense of hope for so many people that are affected by this.
One moment that really encapsulated that idea of the human toll this takes was in Cara’s story where you can see her fighting with her partner and you realize the only cause is due to a lack of access to this drug. How did she enter the mix and what was it like to find scenes where that really came to the fore?
Rachael Dyer: Because Scott and I were primarily the only people in the field for majority of the filming, I think that allowed us to have a really intimate relationships with the subjects we filmed with, [especially with] Scott being a type one himself. It allowed them to really feel comfortable around us and trust us with filming them, and we knew from the beginning that was important, so we could film these intimate moments and people could really understand what it was like firsthand to live with this condition, primarily from three aspects — the physical aspect, which we see a lot through Cara being newly diagnosed and trying to understand the condition and deal with it, then an emotional aspect of how challenging it is mentally every single day, and then the financial aspect of how so exorbitant and crazy it is for people to try and afford their life-saving medication [which we could see in the story of] Sandra and Emma, the mother and daughter who are both type one diabetics as well and had to choose between rent or paying for their life-saving medication — so that was all really important for us to show that human element to the stories.
Scott Alexander Ruderman: We wanted to cover different angles of how this issue is affecting different people on different levels, so when we follow Nicole and James, that’s the advocacy story, the David versus Goliath fight, trying to make a difference, and then you have the mother and daughter [in Sandra and Emma], the medical refugees, and then we have Cara who’s completely lost in the system, newly diagnosed, and her life is flipped, so this way we can radiate a relation to so many different people that are watching this. Anyone can kind of put themselves in the shoes of all our characters.
Rachael Dyer: And we also had experts that are able to break down the issue, but we didn’t want it to become like a talking head film, so we needed to make sure that we were able to have these bite-sized chunks of information that people could understand to understand what is type one diabetes, type two, and also the medical system and all the layers involved. Our editor who is also our animator built really clever graphics that were able to break that down but not take it away from the human stories, and helped translate a lot of the complexities.
Was there anything that happened along the way that changed your ideas of what it could be?
Scott Alexander Ruderman: Yeah, initially, it was really about the type one, but then it immediately we realized we had a massive healthcare story on our hands. This is not just about insulin. This is about an unjust healthcare system in the United States of America that’s failing so many Americans, and even though our film is a small story, there’s a bigger message here and we really wanted to shine light on the voices of the unheard and what’s wrong. That’s the empowering purpose we as filmmakers were able to find in making this film.
What’s it been like engaging with audiences since South By Southwest?
Scott Alexander Ruderman: The response has been truly interesting because so many people are coming and they’re frustrated and they’re angry. And it’s not because they have type one or know someone has type one. They’re just really upset about the health care system and they’re worried [about] if this is going to happen to other life-saving medications, which it is starting to. Then [with] pharma voluntarily bringing down the price of insulin, it creates a whole other issue of when is that happening, but more so, why do we not have government trying to pass federal laws that prevent this from happening again? And why are the barriers of entry into the market for insulin so difficult? Why can’t we have other manufacturers that can make insulin at a competitive price so it can be affordable for the people? Why aren’t the pharmaceutical companies transparent in where they’re spending their money to make such a great big profit? It can’t just be research and development. And if it is, show it to us, tell us how much it costs to manufacture insulin, and we’ll be the judge and analyze if it’s justified or not.
Rachael Dyer: What was really important for us was is that this film was picked up this year and we got it out ahead of the 2024 elections because we really want to make sure that it does make an impact and help with the decision-making [going forward]. So we were really fortunate out of South by Southwest to be picked up by MTV Documentary Films and have it launch on World Diabetes Day on the 14th of November on Paramount Plus and we’re just so excited that this story can finally be told and it can resonate with a lot of people.
“Pay or Die” is now open in Los Angeles at the Laemmle Monica Film Center and will start streaming on Paramount+ on November 14th.
