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The Guardian - US
The Guardian - US
Lauren Mechling

‘I was extremely furious’: the dangerously high cost of insulin in America

poster of insulin bottles
‘This is a bigger story. Yes, it’s about insulin, but this is actually about the healthcare problem in the United States’ … Pay or Die. Photograph: MTV

Ever since he was diagnosed with type 1 diabetes in college, not a day has gone by when Scott Ruderman hasn’t injected insulin into his body. It’s an expensive daily ritual, but he has little choice. “After a few days without it, I’d die,” the 33-year-old said.

A few years ago, when he and his partner were visiting family in Canada, they walked by a pharmacy that offered the drug at a fraction of the cost that he was used to paying. “We went inside and the pharmacist brought out all the different vials from all the different companies,” he said. “I was like: Oh my God. I’m actually feeling accepted in another country that’s not mine.”

The vial he purchased, which would be a two-and-a-half-week supply, cost C$19, compared with the $300-400 he was used to paying in the US. “I was happy,” he recalled, “but I was also extremely furious.”

That rage fueled the cinematographer’s directorial debut, Pay or Die, which he made with his partner, the Australian journalist Rachael Dyer (they are not “co-directors”, he pointed out, but “directors”). Their film is an intimate and righteous production that centers on Nicole Smith-Holt and James Holt, the Minnesota couple whose son Alec died mere months after turning 26 and being cut off from his parents’ health insurance.

Pay or Die follows the Holts’ years-long fight to get a bill passed in Minnesota that would avail those in need of affordable insulin for up to a year.

According to the CDC, 37.3 million people in the US have diabetes, or 11.3% of the American population. The majority of cases are type 2, which can be reversible through lifestyle changes. As the animated infographics in Pay or Die make clear, type 1 diabetes is an autoimmune disease that involves white blood cells killing the pancreas’s insulin-producing cells. People with type 1 diabetes who are deprived of insulin can die as fast as they would without water.

In the US there are three major makers of insulin, a life-saving drug whose co-creators sold the patent in 1923 for $1. From 2002 to 2022, US prices rose by 600%, and many Americans without health insurance were looking at a monthly cost of $1,300. “Once Rachael and I started researching, we were actually quite shocked by the number of people that were rationing their insulin and as a result of that, many unfortunately passed away,” Ruderman said.

Another main focus of the film is the mother and daughter Sandra and Emma Cook, both of whom have diabetes and struggle to pay for their medication. When Sandra lost her job, the pair briefly lived out of their car and traveled over the border to purchase insulin in Canada. In one of the film’s more heartbreaking moments, 11-year-old Emma declares she wishes she could get a job in order to help her mother cover the costs.

The handful of experts in the film seem rightfully distressed. A doctor at Massachusetts general hospital says she commonly mentions to her patients that traveling to Canada to pick up drugs is an option.

Ruderman and Dyer did not interview anybody at the pharma companies, but a lobbyist is seen going blank-faced and deflecting a question about production costs at a Minnesota court hearing. “Although we faced limited access, we were also well aware of their talking points. They often argue that they spend billions of dollars for research and development, using it as a justification for high prices, or they frequently shift blame onto others, like pharmaceutical benefit managers.”” he said.

The bill named after Alec Smith was passed in 2020, granting Minnesotans who need insulin the right to a month’s supply for $35 or a 90-day supply for $50. The day it went into effect, a pharmaceutical consortium filed a lawsuit. A federal judge dismissed the case.

Advocates are now working to pass similar bills in other states, and pushing for a federal bill that would ensure that the pharmaceutical companies that have recently caved to public pressure and slashed their prices, do not backslide. “They could bring [the prices] up tomorrow,” Ruderman said. He is equally unconvinced of the efficacy of the affordable insulin programs that some pharma companies are rolling out. “They’re not advertised heavily and they’re very limited,” he said.

“This is a bigger story. Yes, it’s about insulin, but this is actually about the healthcare problem in the United States. People are left with no choice,” Ruderman said. His film isn’t only an American horror story. “Look at other countries that are trying to privatize healthcare – like Argentina or maybe the UK,” he said. “This film tells the story of what happens. It’s a cautionary tale.”

  • Pay or Die is out in US cinemas on 1 November and on Paramount+ from 14 November

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