‘I was extremely furious’: the dangerously high cost of insulin in America
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’ yearslong 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, 11year-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
the publication anointed as people who could change the world?
Her rise to international fame began in 2022, when she became the first openly transgender woman elected to the Montana legislature, after a grassroots campaign prompted by the Republican majority’s mounting attack on trans rights and the independent judiciary system.
The 2023 legislature, which convened in January, included a spate of legislation that undercut medical care and other essential rights for trans people. To be clear, these were not issues rising from a groundswell of popular support. Montana has only recently flipped to being deep red politically, and the most talked-about topic across the state these days is the unaffordability of housing.
Making life difficult for trans people is not something most voters were demanding. But Republicans insisted that trans rights were a threat and pursued legislation, ignoring hours of testimony against the bills.
The severity of the attack on trans rights in Montana was new; farright conservatives targeting the marginalized as a tactic is not. Ken Toole, who was director of the Montana Human Rights Network through battles over gay rights and marriage equality in the 1990s and 2000s, recalls a similar landscape. “The conservative movement in the state used these kinds of issues to characterize the political debate [then and now],” he said. “Essentially, it’s scapegoating.”
This spring, during a debate over a bill to limit gender-affirming care for youth, Zephyr spoke passionately against the legislation: “I hope the next time there’s an invocation, when you bow your heads in prayer, you see the blood on your hands,” she told the house.
It was then that the Republican leadership decided her words went too far.
Leadership demanded she apologize; she refused. Multiple studies have shown that trans youth have higher suicide rates, she argued, and this kind of legislation would have a detrimental impact on kids.
In retaliation, the legislative leadership, run largely by one family, cut her microphone for three days, a move unprecedented in a citizen legislature with a long history of spicy rhetoric and fiery debates.
On the third day of her silencing, a group of protesters filled the house gallery, a collection of seats above the grand chamber, to challenge what was happening. They chanted “Let her speak” as Zephyr held up her microphone and put a hand over her heart.
Police in riot gear swept the protesters from the capitol and, in another historic move, the Republican leadership closed off public access to the gallery for the remainder of the legislative session. Republicans later voted to banish Zephyr from the house chambers, leaving her to set up a makeshift office on a bench outside the door of the body where she had been elected to serve. The next day, several women related to Republican legislators showed up and took over her bench, seemingly hoping to drive her out of sight.
It was this anti-democratic wave against Zephyr and her own calm, deliberate opposition to fading away quietly that shot her into media stratosphere. The story spread fast and far in a country watching democratic norms fall away in Republican-controlled states.
She appeared on ABC’s The View, was featured across national and international media, and was invited to national events. For months, her message seemed to be everywhere. Montana Republicans, in trying to silence one opposing voice, had accidentally turned her into a national star. For Zephyr, though, the moment was about much more than fleeting celebrity. She’s planning to build a lasting movement out of it.
In each conversation I’ve had with Zephyr, her fiancee figures prominently.
She proposed to Erin Reed, the trans journalist and activist, shortly after the legislative session ended this spring; they traveled to France to celebrate. Reed lives on the east coast, and for now Zephyr is committed to her work in Montana, making this state a more inclusive and safe place for families like her own.
•••
Zephyr was born in 1988 in Billings, Montana, still the state’s largest city. It’s long been the heart of conservative Montana politics, a place where ranchers and Chamber of Commerce types ran the show. Her own family was conservative and religious.
She describes her childhood there as fairly unremarkable, like that of any other Montana kid. In 2000, her father’s work prompted the family to move to Seattle. There, Zephyr found her passion in sports, winning five state wrestling titles and finishing high school with an offer of a wrestling scholarship. She opted to stay closer to family and go to the University of Washington instead, but it’s clear that competitive sports shaped her. She still recites by memory the words of a banner that hung over the practice room: “Every day I leave this room a better wrestler and a better person than when I entered,” she says, adding how the coach made them slap the sign as they left the room.
It’s become a personal motto.
After graduation, Zephyr was called back to Montana. This time, as an adult, she went to Missoula to study creative writing at the University of Montana. She found a job at the university and worked part-time teaching the Lindy Hop at a local dance studio. In 2018, she reached the point in her life when it was time to come out to her community and transition. Her family’s response caused her to cut ties, but as she tells the story, Missoula, one of Montana’s more progressive cities, surrounded her with love and warmth.
It was then that she chose her name: Zooey Simone Zephyr. Zooey, meaning life, Simone, a tribute to her paternal grandmother, and Zephyr, “a gentle breeze blowing from the west”.
“I thought, ‘I want to be that, a gentle breeze,’” she says.
Her community rallied around her. Her boss immediately had the restroom signs changed to remove gender markers, getting ahead of any questions. Her dance students didn’t bat an eye when she told them her name and identity as a woman. And her friends gathered at a brewery to celebrate the transition. The response from Missoula made her certain she was in the right place.
In the years since, she has at times debated leaving Montana as the attacks on trans people mounted. But now, she says, “I’m not going anywhere. This is my state. I was born here. You can’t kick me out.”
She toyed with the idea of running for a different office, but her heart is in organizing.
We talked at length about the changing face of Montana and what it means to have grown up here, particularly when it seems the politics have been hijacked by a national agenda that has very little to do with ordinary people’s lives. She felt no one in elected office was listening to her, and so once she decided to run, she was dead set on winning.
“I remember thinking to myself: if you really want to move the needle, you need representation,” she said.
In Missoula, representation is spreading. Gwen Nicholson, a young Indigenous transgender woman who was born and raised there, is running for city council on a progressive platform centered on affordable housing.
Nicholson worked in the capitol during the anti-trans onslaught this winter. She remembers thinking: “Why am I not welcome? Why does it feel like this place, which is my home and has been home to my family for generations, is trying to push me out?”
Nicholson said she had confessed to a friend: “‘All this shit makes me want to run,’ and they were like, ‘Run away, or run for office?’ There has to be some material way to fight back.”
This is the kind of movement Zephyr wants to see catch fire all across Montana. The state has been defined for generations by complex, sometimes surprising politics – but contemporary rhetoric has flattened its identity in recent years to that of just another deep red state. In traveling throughout her home state, she has found opinions that go far beyond the standard talking points that overwhelm political debate.
“Every conversation you have with someone, you go to a community where Democrats haven’t run a candidate in a long time, and you talk to folks there, and they want to fight back,” Zephyr says.
Zephyr will kick off a different kind of political effort in Montana beginning this fall. She’s creating a political action committee to raise money that will help her travel the state and recruit and train candidates for state office. In the last election, Democrats didn’t even appear on the ballot in one-third of legislative races, and the resulting landslide gave Republicans a supermajority and nearly unlimited power over Montanans’ lives. Dissenting voices were ignored and written off. Zephyr intends to build a movement that will empower progressives to run and win in places like Libby where Democrats haven’t won in years.
“We can make that difference on the ground, we can move the needle on the ground here in a way that the national Democratic party wouldn’t know how to do,” she says. “It starts from the bottom.”
People deserve to be heard, she says, and right now, elected officials in this state are only listening to a select few.• In the US, you can call or text the National Suicide Prevention Lifeline on 988, chat on 988lifeline.org, or text HOME to 741741 to connect with a crisis counselor. In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email jo@samaritans.org or jo@samaritans.ie. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org
fects. In the year after Roe’s demise, the rate of abortions in Virginia surged. Clinics in the state performed, on average, roughly 550 more abortions each month compared with the months before Roe disintegrated, according to research from the Society of Family Planning.An abortion ban could force many of those patients to flee even farther north, to clinics that are already overwhelmed.
Republican proponents of a 15-week ban argue that it’s a reasonable compromise on a contentious issue– the vast majority of US abortions take place in the first trimester of pregnancy. But abortion providers and their allies say they are increasingly seeing patients later on in pregnancy, due to the cascade of post-Roe restrictions that make it harder to get abortions quickly. People with low incomes, people of color and minors all are more likely to get abortions later in pregnancy.
‘I think it’s cruel’
A 20-year-old woman who got an abortion at Whole Woman’s Health the same day as Dunans said that, although an abortion fund helped cover half the cost of her abortion, she and her partner struggled to pool the remaining $700.
“I’m still at home and don’t feel like I could give the child the best life right now,” she said. The woman, who asked to speak anonymously, wants to go to college and get a real estate license.
“I would always say if I did something stupid, I would have a baby, but now I’m at the point where I did something stupid,” the woman said, as she snacked on chocolate pudding and a Slim Jim while waiting for the procedure. “Well, not stupid. I had sex and I got pregnant.”
The woman, who said she has identified as “pro-choice” all her life, wants to move out of her conservative hometown in Virginia, especially if the state restricts abortion. Right now, she can’t afford to leave.
After Dunans and Stone discovered Dunans was pregnant, the couple took a few weeks to decide what to do. Having been together since they met on the school bus seven years ago, theyare already parents to a one-yearold. They want to have a second child one day, but decided they just can’t afford another right now. Stone does maintenance; Dunans raises their child.
“I don’t think I would be able to stay afloat with two children at this time,” Dunans said. Becoming a parent is exhausting, she continued: “It’s mentally draining. It’s emotionally draining. It’s physically draining. And there’s a lot of people who don’t have that strength to do so. So I’m always pro-choice. Your body, your choice.”
Since Georgia bans abortion past roughly six weeks of pregnancy, Dunans booked an appointment at an abortion clinic in North Carolina for the first week of October. The drive took five hours and cost $80 in gas. Once she and Stone arrived, they learned Dunans was past 12 weeks of pregnancy. Due to a law enacted on 1 July, North Carolina clinics can’t perform abortions after that point.
“My jaw dropped,” Dunans said. “We don’t have the luxury of wasting money like that, not in this time in our lives. So every penny counts. And to get that information –it was crushing.”
After the 12-week ban took effect in North Carolina, abortions in the state plunged by more than 30%, according to recent research by the Guttmacher Institute, which tracks abortion restrictions.
On the day Dunans and Stone visited Whole Woman’s Health, about a week after their trip to North Carolina, 18 people showed up for abortions. At least two patients came from North Carolina – two from Georgia and one from West Virginia, according to a doctor who performed abortions that day.
Due to the volume of patients that day, the doctors worked late into the evening, well past the clinic’snormal closing time. Because many patients had brought loved ones –their boyfriends, their mothers – to the appointment, the clinic was a full house. People waited in a converted living room, complete with fireplace and brochures for birth control, and listened to a soundtrack of relaxing muzak, waves and birdsong as doctors bustled around upstairs.
Almost everybody was dressed for comfort, withmanyin sweats and Crocs. Few people spoke; severalcouples held hands and cuddled. One man appeared to fall asleep as he and his partner waited for her turn.
The clinic’s purple walls were peppered with quotes from famous women and inspirational posters. “You got this,” one read. “Be your own hero,” another declared. One wall in a back room featured a quote attributed to Heather Heyer, the woman killed in the infamous 2017 Unite the Right rally in Charlottesville. “If you are not outraged, you are not paying attention,” it read.
Amy Hagstrom Miller, the CEO of Whole Woman’s Health, bought the clinic in 2017 from a retiring abortion provider, whose version of security was a back door that played the song Jingle Bells whenever someone walked in. Now, a receptionist keeps an eye on several cameras pointed at the clinic’s exterior –one of the few visible reminders that abortion, and the people who provide it, are under threat. A list of anti-abortion extremists, including their pictures, hangs in a back hallway, away from patients’ eyes.
Currently, the clinic performs abortions up until 16 weeks of pregnancy. Hagstrom Miller wants to expand to 18 weeks by the end of the year and eventually go as late as 24 weeks.
“More and more people are being pushed into the second trimester because they’re being denied abortion in Alabama or in Georgia or South Carolina or West Virginia or Tennessee, and so they have to figure out how to travel to another state and get childcare and get time off work,” she said. “It just pushes them further into the pregnancy – not because they’re just like sitting around, saying, ‘Oh, I’m gonna wait until the second trimester ’cause that sounds like a better kind of abortion.’ I think it’s cruel.”
Avantae, who asked to be identified only by her first name, works as a patient advocate at Whole Woman’s Health, counseling patients as they navigate the process. She had an abortion when she was nearly 14 weeks into her pregnancy. She only realized she was pregnant at 13 weeks, when she was a single mother of one and, she said, “at a really unhealthy and low place”.
If she had been unable to get an abortion, Avantae is not sure if she would still be alive.
“Even the child that I had, who I love and adore, was not enough to keep me here,” Avantae said. “My abortion literally saved my life.”
Most abortion patients in the United States are in their 20s, have already given birth at least once before, and have low incomes. Avantae talks to patients who don’t have phones, cars or computers; they have to scramble to take time off work, find childcare and scrape together hundreds of dollars to pay for an abortion.
All of these problems can delay getting care.
“Fifteen weeks, from start to finish, is a seemingly good amount of time, but in the scope of pregnancy and making this type of decision, it’s not enough time,” Avantae said.
If Virginia outlaws abortion past 15 weeks or earlier, southern abortion seekers will likely stream into clinics closest to the Mason-Dixon line, in places like Maryland or Washington DC. Those clinics are already facing an increase in patients.
Hagstrom Miller, well aware that the comingelection may torpedo her plans to expand the kinds of abortionsher clinic offers, doesn’t trust that Republicans would stop at a 15-week ban. She’s not alone.A September poll from Data for Progress, a progressive polling firm, found that more than half of likely Virginia voters in competitive districts have little trust in Republicans when it comes to their positions on abortion and reproductive healthcare.
After all, the case that overturned Roe v Wade, Dobbs v Jackson Women’s Health Organization, technically turned on the constitutionality of a 15-week abortion ban in Mississippi. Since then, 16 states have banned almost all abortions.
“They start with a 15-week ban,” Hagstrom Miller said. “And then they push to a six-week ban, and then they push to a total ban.”
This article was amended on 31 October 2023 to correctly identify the lower chamber of Virginia’s legislature.
You should have that choice to determine how your life should go, especially if you cannot handle a child
Chasity Dunans
thinking about the rest of us,” Jeffrey Melara, a Kaiser Permanente worker in California, said in the days ahead of the strike.
But it is the strike that hit the US car industry that has created the most headlines and impact.
The Big 3 automakers, Ford, General Motors and Stellantis, made $250bn in profits from 2013 to 2022, an increase in 92% while average auto worker wages dropped 19.3% during the same period. Their three CEOS have received about $1bn in compensation since 2010.
Andy Davis, an assembler at Allison Transmission in Indianapolis, Indiana, and UAW Local 933 second vice-president, said the recent strikes and broad fight by autoworkers is a push to restore the upward mobility and security that has dissipated as a worker in a highly profitable industry.
“America sees our UAW jobs as icons of success and stability for the average and ordinary,” said Davis. “That’s exactly what we’re trying to get back to.”
According to the National Labor Relations Board, union petitions increased 3% in fiscal year 2023 compared to 2022, with 2022 seeing a 53% increase in union election petitions from the previous year. During the same period, the NLRB’s field offices saw a 10% increase in unfair labor practice charges, from a 19% increase in 2022.
The NLRB has noted the agency remains severely understaffed and underfunded amid rises in caseloads, with field office staff being cut by 50% in the past two decades.
Meanwhile, labor law reform efforts to improve worker protections to organize unions such as the Pro Act have stalled in Congress, with little to no support from the Republican party despite public support for unions bridging across partisan lines.
US union membership declined to 10.1% in 2022 from 10.3% in 2021, the lowest on record according to the Bureau of Labor Statistics. Although the number of workers belonging to unions increased by 273,000 workers to 14.3 million in 2022, the total number of workers in the US workforce grew by 5.3 million, resulting in the drop in union density.
While national headlines suggest there is a wave of union wins across the US, wide variations persist in unionization rates based on workforces and geography.
Some 33% of public sector workers are union members, compared with 6% of private sector workers. Hawaii has the highest union density in the US, with 21.9% of the workforce affiliated as members of unions, compared with the lowest union density in South Carolina at 1.7%.
These wide variations in union density by state have significant economic impacts. A December 2021 report by the Economic Policy Institute found on average the 17 states with the highest union densities have higher state minimum wages, higher median annual incomes, higher unemployment insurance recipiency rates, lower uninsured populations, and are more likely to have state laws such as paid sick leave and paid family and medical leave.
Union membership in the US soared in the 1930s amid industrial unrest and the Great Depression, spurring union density rates of over 30% in the wake of second world war, but gradually began decreasing in the 1960s only to sharply decline in the 1980s and the following decades.
The labor movement’s rise in the US incited well-funded anti-union efforts, propped up by a multimillion-dollar anti-union consultant industry and corporations that are currently fighting union campaigns despite numerous violations and rulings against them at the National Labor Relations Board. They include Amazon, Starbucks, REI, Trader Joe’s, Apple and Chipotle – big employers who have vigorously fought off union drives and efforts for workers to secure a first union contract.
“Management and employers have captured the labor law terrain and this has been true for quite a while, so that they are extremely effective at blocking unionization efforts and diminishing the power of already organized workers,” said Ruth Milkman, chair of the labor studies department at CUNY School of Labor and Urban Studies. “Until there’s some kind of overhauling of US labor law, it’s hard to see how that long-term decline is going to get turned around. Because what we’re seeing in the new organizing is blockages at every turn.”
Milkman explained that previous upswings in unionization in the US have historically come in large waves, but that the increases in strikes, union organizing among young workers especially and increases in public support for the labor movement have yet to occur on a big enough scale to reverse the long trend of union density decline in the US.
But the desire among workers for unionization is there as numerous polls have reported record favorability, especially among young people, for labor unions. Polling has shown that an increasing number of workers would join a union if they could – far higher rates of favorability than the low proportions of workers in the US who are currently unionized.
“The new organizing is happening, the attitudes, pro-union views, led by a new generation that was often dismissed as apolitical,” added Milkman. “This whole political generation that has only come to being in the last decade or so, they’re very eager to do this and they are running up against a brick wall in a lot of cases, but I don’t think they’re going to stop.”
Ken Jacobs, chair of the University of California Berkeley Center for Labor
Research, cited some of the positive rulings to come out of the NLRB under the Biden administration aimed at improving workers’ protections to organize under the National Labor Relations Act amid not only at increases in union election petitions, but win rates for unions as well.
“The win rate has to be turned into gaining collective bargaining agreements” said Jacobs. “There won’t be a change in labor law unless large numbers of workers are in motion demanding unions, and that won’t happen without a large investment in organizing.”
From the Red for Ed teachers’ strike wave in 2018 and 2019 to the uptick in worker organizing both in and out of unionization efforts through the Covid-19 pandemic, Jacobs noted workers being able to raise public awareness and see a ground swelling of support have helped inspire this cultural shift to viewing unions favorably.
“I think we have seen a big cultural shift around unions,” concluded Jacobs. “I don’t think we have in any time in history seen examples that have an important effect on the balance of power between workers and capital happen without very significant pressure from below with massive engagement of workers.”