“Pay or Die,” a new feature from MTV Documentary Films, lays bare the cost of America’s insulin crisis.
Directed by Scott Alexander Ruderman and Rachael Dyer, the doc, which premiered at SXSW in March, illustrates how Type 1 diabetics are struggling to afford insulin — a liquid that most humans are lucky enough to produce naturally in their bodies. For those whose bodies have stopped producing it (through no fault of their own) and who can’t pay for it, the consequences can be fatal, as the documentary’s main subject, Nicole Smith-Holt, knows all too well.
“He could not afford to stay alive,” she tells the filmmakers of her son Alec, a Type 1 diabetic who died at the age of 26. Despite earning a salary of $40,000, he could not afford medical supplies, which topped $1,000 per month. He was found dead in 2017 from complications caused by rationing insulin just three and a half weeks after ageing out of his mom’s insurance.
Ruderman and Dyer follow Smith-Holt and her husband James over four years as they battle Minnesota lawmakers over affordable insulin, the price of which is artificially hiked by the pharmaceutical industry and insurance companies.
“When you’re making documentaries, it doesn’t all happen in a matter of weeks,” Ruderman says. “We were following a very hard story about trying to change healthcare in America. And there’s a lot that goes into that.”
While the story is personal to Ruderman, who was himself diagnosed with Type 1 diabetes at the age of 19, he says “Pay or Die” is as much a documentary about America’s broken healthcare system as it is the insulin emergency specifically.
Ahead of the doc’s closing night screening at Human Rights Watch Film Festival in New York City on June 8, Ruderman and Dyer spoke to Variety about what compelled them to make the film and what they hope its legacy will be.
How did you choose Alec’s family as your main subjects for this film?
Ruderman: Alec’s story has become the poster child of the insulin issue in America. When we met Nicole and James, we knew this was the story. They were not advocates, they didn’t do this stuff before [Alec died]. Their lives changed. And that was so inspiring, the commitment and dedication.
Type 1 diabetes is one of the most difficult illnesses to understand: the fact it can kill you in a matter of hours, the mental toll it takes of managing it every hour of the day (and night). Why did you decide to use it as an example of the problems with U.S. healthcare and did you find it difficult to convey its complexity?
Ruderman: To answer your first question, without insulin, you’re dead in days. It is truly a life-saving medication. No diet can help it, nothing can help it. You need insulin if your body doesn’t produce it. [Conveying the reality of Type 1 diabetes] was a challenge. However, we have an amazing editor, Will Rogers, who helped us with our graphics animations. We sat down and spoke to experts and got charts and graphs, and [the three of us discussed] how do we make this visually understanding and familiarising to people that they can get it? It was a challenge, but I feel that we succeeded.
Dyer: We had to have this balance of wanting it to be a very [cinema] verite-driven film with a human story element, but also have some of the graphs and charts to kind of break it down. Everyone can emotionally connect with a mother that’s lost their son or father that’s lost their son. It was very important, I think, in our storytelling to make sure that that side of it came across as well as the informative side of it.
Ruderman: But also, if you think diabetes is confusing, what about the American healthcare system? The complexities of that – that to us was the challenge. How do we simplify the American healthcare system to people so they can understand it? Because it’s rigged in a way so that no one wants to deal with it so you give up.
What is your hope for this documentary once it’s released?
Dyer: For people to write to their legislators, and to make sure that the federal bill [lowering the price of insulin] is passed. We wanted to make sure that the film gets out ahead of the 2024 elections, because we’re hoping this will be a conversation that can be a part of those election stakes.
Ruderman: I think most documentaries that have a social justice message to them is to make change, right? The power we have as filmmakers is to try to make the world a better place. We want to save lives. We want to prevent this from happening and not only to insulin, but there’s a lot of other expensive medications: cancer medication, inhalers, blood pressure pills. It really shows what happens when healthcare is treated too much like a business and not as a public service.
This interview has been edited for length and clarity. “Pay or Die” is set for a theatrical release later this year followed by a streaming launch on Paramount+.
Pictured top: Nicole and James Smith-Holt with a photograph of their son Alec (courtesy of MTV Documentary Films)