Here are two phrases that should forever be banned from our vernacular: “medical refugee” and “insulin rationing.” Tragically, you hear them often in Scott Alexander Ruderman and Rachael Dyer’s documentary receiving its world premiere at SXSW.

Bluntly if appropriately titled, Pay or Die serves as an infuriating reminder of the economic and social injustice permeating our system that forces people to make life-or-death choices when it comes to what should be the simple matter of procuring the medicine that would keep them alive — specifically, in this case, the insulin needed by those suffering from diabetes.

Yes, one major pharmaceutical company, Eli Lilly, has recently announced that it is slashing the price of the drug. And the Biden administration managed to pass a bill mandating a $35 cap on insulin for Medicare patients. (Republicans opposed expanding the price limit to all citizens, apparently unaware that diabetes afflicts those under age 65 as well.) But that incremental progress isn’t enough to guarantee that everyone suffering from this potentially fatal illness can get what they need. Not to mention that drugs for many other illnesses are still available only at often unaffordable prices.

For co-director Ruderman, the issue is very personal. He was diagnosed with type 1 diabetes when he was only 19 years old, becoming dependent on insulin to regulate his blood sugar. That was bad enough, but at least he was still on his parents’ health insurance plan, which he was able to stay on until he was 26. (And even that benefit is a relatively recent development, thanks to Obamacare.) As a freelance filmmaker, he was suddenly confronted with the economic burden of paying for the drug, which can run some $300 for a vial, or a month’s supply.

This for a drug discovered in 1922 by two doctors who sold their patent for $1 each because they didn’t think they should profit from it. One of them declared, “Insulin does not belong to me, it belongs to the world.” It feels almost like a fairy tale.   

As might be expected, the documentary, for which comedian Sarah Silverman serves as an executive producer, puts very human faces on the issue. It begins with home movies featuring Alec Smith from a toddler to a young man. Alec developed type 1 diabetes at a young age and, like Ruderman, was forced off his parents’ insurance when he turned 26. Lacking a job that provided health insurance, he attempted to ration his insulin, of which he needed several injections daily. Within one month of attempting to pay for the medicine on his own, he was found dead in his home. His parents tearfully recount his story and display a jar containing his ashes. After that, they made it their mission to persuade the Minnesota State Legislature to pass a bill ensuring that such needless deaths won’t occur in the future.

Then there’s Sandra and her 11-year-old daughter, Emma, who also have type 1 diabetes. After Sandra loses her job, she and Emma become homeless, living in their car in a parking lot. The only way they can get the medicine they need is by driving to Canada, where insulin costs a fraction of what it does in the U.S. A young Canadian pharmacist comments, “It’s very rewarding to help Americans in the predicament they find themselves in. In the States, prescription medicine is handled like a business. In Canada, it’s health care.” You find yourself wincing in national shame.

Finally, there’s Cara, a perky 19-year-old who had the misfortune of being diagnosed with the disease at the height of the COVID epidemic after her vision suddenly went blurry. She’s forced to teach herself how to inject herself with insulin, and she and her supportive boyfriend find themselves struggling to figure out how to deal with their new economic reality.

Along the way we hear from several experts, including S. Vincent Rajkumar, a hematologist oncologist at the Mayo Clinic who has devoted himself to spotlighting the unaffordability of life-preserving drugs needed by so many. Some 37 million people in the United States live with diabetes, seven million of them dependent on insulin. That so many have to struggle not just with the disease but also the cost of staying alive is a national disgrace that documentaries such as this, however well-intentioned, can only begin to address.