A scathing document on the cruelty of insulin costs – The Hollywood Reporter

pay or die

Courtesy of SXSW

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

Frankly if the title is appropriate, pay or die serves as a maddening reminder of the economic and social injustice that pervades our system and forces people to make life and death choices when it comes to what should be the simple matter of getting the medicine that would keep alive – in particular, in this case, the insulin necessary for diabetics.

Yes, a major pharmaceutical company, Eli Lilly, recently announced that it was reducing the price of the drug. And the Biden administration successfully pushed through a bill imposing a $35 cap on insulin for Medicare patients. (Republicans opposed extending the price limit to all citizens, apparently unaware that diabetes also affects those under 65.) But such incremental progress is not enough to ensure that anyone with the disease life-threatening can get what she needs. Not to mention that drugs for many other illnesses are still only available at often unaffordable prices.

For co-director Ruderman, the question is very personal. He was diagnosed with type 1 diabetes when he was just 19, becoming dependent on insulin to regulate his blood sugar. It was bad enough, but at least he was still on his parents’ health insurance plan, which he was able to keep until he was 26. (And even that benefit is a relatively recent development, thanks to Obamacare.) As a freelance filmmaker, he was suddenly faced with the economic burden of paying for the drug, which can cost around $300 for a bottle, or a month’s worth. supply.

This for a drug discovered in 1922 by two doctors who sold their patent for $1 each because they didn’t think they could profit from it. One said, “Insulin doesn’t belong to me, it belongs to the world. It almost looks like a fairy tale.

Predictably, the documentary, which comedian Sarah Silverman is executive producing, puts some very human faces to the issue. It starts with family movies starring Alec Smith from a toddler to a young man. Alec developed type 1 diabetes at a young age and, like Ruderman, was forced to give up his parents’ insurance when he was 26. With no job offering health insurance, he tried to ration his insulin, which he needed several injections a day. Less than a month after trying to pay for the drugs himself, he was found dead in his home. Her parents tearfully recount her story and display a pot containing her ashes. After that, they made it their mission to persuade the Minnesota State Legislature to pass a bill ensuring that such unnecessary deaths would not 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 drugs they need is to drive to Canada, where insulin costs a fraction of what it costs in the United States. A young Canadian pharmacist comments: “It is very rewarding to help Americans in the difficult situation in In the United States, prescription drugs are treated like a business. In Canada, it’s health care. You find yourself grimacing in national shame.

Finally, there’s Cara, a perky 19-year-old who was unfortunate enough to be diagnosed with the disease during the height of the COVID outbreak after her vision suddenly went blurry. She’s forced to teach herself how to inject insulin, and she and her supportive boyfriend struggle to figure out how to cope with their new economic reality.

Along the way, we hear from several experts, including S. Vincent Rajkumar, a hematological oncologist at the Mayo Clinic who has dedicated himself to bringing to light the unaffordability of the life-saving drugs that so many people need. Some 37 million people in the United States live with diabetes, seven million of whom are insulin dependent. The fact that so many people have to struggle not only with the disease, but also with the cost of survival is a national disgrace that documentaries like this, however well-meaning, can only begin to address.