Nicole Smith-Holt, a college financial aid specialist in Richfield, Minnesota, got the call on a Tuesday in June 2017. Her son Alec had been found alone in his new apartment, slumped over and ice-cold. In shock and disbelief, Nicole assumed that an intruder must have broken in. After Nicole and her husband, James, arrived at Alec’s place, she asked the paramedics if they were certain that he was even dead. He was such a heavy sleeper—had they tried shaking him? “What in the world could have possibly happened?” Nicole recalled thinking. “He was 26 years old. Twenty-six-year-old boys don’t just drop dead!”
Detectives on the scene wouldn’t let Nicole and James into the apartment, so they waited outside with their daughters and a few close family friends. Neighbors lingered on the sidewalk as night fell. The medical examiner finally came out and told the small crowd that Alec had probably died late Monday evening. He’d been dead for nearly 24 hours. The examiner also noted that there was no insulin left in the house and nothing but a few test strips in his kit—an alarming state of affairs for a Type 1 diabetic, as Alec had been. The insulin pens in the fridge were all empty and looked like they’d been tampered with, as if he’d tried to extract every last drop. The medical examiner asked if anyone wanted to go inside and say goodbye. “Then it really hit,” Nicole told me. Two years after the fact, she half-laughed to think of it: It hadn’t even occurred to her that Alec’s diabetes might have killed him.
Alec’s landlord gave his family just days to clear out the apartment. Nicole drove Alec’s car to her home and began cleaning it in the driveway. It was a mess. “If I didn’t know better, I’d have thought he was living out of his car,” Nicole said. “It’s like, really—the back seat does not have to hold all of this garbage, how do you even fit people back here?!” But as she sifted through the detritus of his life, a story began to emerge. Alec had a habit of tossing his Walgreens prescription bags and receipts in the back seat. Looking at them all at once like this, Nicole realized, with the force of an epiphany, just how expensive his illness was.
Alec had been working as a manager at a family-owned restaurant, a business that was too small to be required to provide insurance under the Affordable Care Act. He had stayed on Nicole’s insurance, which she had obtained through her job, until his twenty-sixth birthday the month before. After that, his options on Minnesota’s Obamacare exchange were limited: His $35,000 salary entitled him to only partial subsidies, and he couldn’t afford to pay both the premiums and deductibles on offer. So he’d been paying for his insulin out of pocket.
When she found Alec’s final receipt, everything clicked: It was from June 22, just five days before he died, for over $1,300 worth of supplies. And then, on the bottom: NO SALE. Now the debris in Alec’s car felt less like trash and more like evidence. “I just got so angry,” Nicole told me. “I’m just grabbing all of this shit and throwing it in the garbage, and afterward I’m like, I should have saved it!” He’d tried to fill his prescription but came up short. Then he was dead.
Soon after, Nicole visited the Walgreens identified on the receipt. The pharmacist remembered Alec leaving without meds after being charged more than he had in his bank account. Alec’s girlfriend, Lainie, then showed Nicole texts she had exchanged with him weeks before, in which the two brainstormed cost-cutting measures like ordering test strips from Amazon.
For Nicole, it all added up to something unimaginable: Her son hadn’t just died of diabetic ketoacidosis, a life-threatening condition in which the body is unable to process glucose into energy. He was killed by the high price of insulin.
At first, Nicole saw Alec’s death as more of a personal tragedy than a political one. “I was really ashamed,” she said. “I thought we must be the only family in America who struggled to afford insulin. I was really embarrassed that my child had suffered the ultimate consequence of not being able to afford medication.”
But Nicole’s family is hardly alone. In the decade preceding Alec’s death, prices of the most common insulin had risen threefold. Studies have found that around one in four diabetics ration their insulin intake, skipping doses or taking less than prescribed to make supplies last. Still others resort to desperate measures to make sure they can afford their life-sustaining drugs, including selling their houses or cars, moving in with family, or staying in unhappy marriages or jobs for the insurance. Most of the dozens of patients and family members I spoke with said their lives increasingly revolved around the ever-rising cost of insulin.
As a result, insulin prices have commanded a central spot in the political debates over health care, revealing the way that corporate greed, government fecklessness, and a broken insurance system have combined to result in deaths that should be entirely preventable in an economically advanced country like the United States. Health care advocates have advanced proposals to address the high cost of insulin—but in the wider compass of the debate over equitable access to health care, the insulin cost crisis remains a potent argument for an overhaul of the system toward Medicare for All.
One analysis by the think tank Data for Progress found that lowering insulin prices enjoyed significant bipartisan support. Most Democratic presidential candidates have explicitly discussed insulin in their policy proposals and stump speeches. Even the Trump administration moved to allow employers to cover insulin before a patient hits their deductible, while several states and insurance companies have imposed copay caps for certain patients. Some states have passed laws allowing patients to access emergency supplies without a current prescription, to cut down on tearful last-minute pharmacy visits by those caught unawares by an expired prior authorization with their insurer.
But none of these measures is universal, and so diabetes patients are still at risk of falling through the cracks. There is not yet a robust generics market for insulin, which has helped keep prices high, and many advocates say the most effective solutions include publicly manufacturing insulin or turning insulin into an over-the-counter drug, which is how it is sold in other developed countries. In the absence of a systemic solution like Medicare for All, though, the only actors capable of unilaterally addressing the problem are the manufacturers themselves: In the U.S., these are Eli Lilly, Novo Nordisk, and Sanofi.
Years of bad press—including a few high-profile congressional hearings at which Nicole Smith-Holt testified—have the drug companies on the defensive. Insulin remains one of the most profitable products made by all three companies, producing billions of dollars in revenue each year. For the most part, when Big Pharma executives are challenged to explain the skyrocketing cost of insulin, they’ve tried to pass the buck—blaming insurance companies or pharmaceutical benefits managers for shifting costs onto patients or taking huge cuts for themselves.
Each company has also pointed to its own patient assistance programs that ostensibly help diabetics afford their insulin. But not all patients are eligible, and several have told me they’ve been flat-out denied or cut off from the services after a short time. Others who have successfully used the programs described long delays, which would be perilous for an insulin-dependent person out of medication.
And when activists can manage to wrangle extra insulin vials out of manufacturers or friends, they often give them to Nicole, who receives a handful of desperate requests per week from patients around the country—a number that spiked in January, when deductibles reset in the new year.
The network that the diabetes community has built can be a critical lifeline for patients. It has also been at the forefront of efforts to get the government to do something about this country’s health care crisis.
The first time Nicole spoke about Alec’s death publicly was in 2017, for a small local news station more than an hour outside of Minneapolis. During the long drive to the studio, her emotions were raw. “I spent the whole time driving there in tears,” she said. She cried on camera, too, and soon afterward began receiving messages from people who saw the clip. She heard from patients, family members, and reporters. Gradually, she realized Alec’s story was going viral: Her family had inadvertently become main characters in a national news saga about the crushing impact of drug prices on patients and the loved ones forced to grieve their deaths.
By the end of the year, when state Representative Erin Murphy visited a meeting of the local Service Employees International Union health care committee, Nicole’s husband, James, took the opportunity to tell Murphy about Alec. Days later, Murphy was sitting with James and Nicole at their dining room table, hearing Alec’s story. That night, the three of them began brainstorming what would become the Alec Smith Emergency Insulin Act, which was introduced into the Minnesota state legislature in 2018. If it is ever passed into law, the bill stands to save the lives of diabetes patients like Alec, requiring pharmacies throughout the state to provide a free three-month supply of insulin to diabetics below a certain income threshold who can’t afford their medicine.
The bill would be paid for with a tax on pharmaceutical companies—a critical provision for Nicole, given that sky-high drug prices in the U.S. directly result from the unilateral pricing powers enjoyed by Big Pharma.
Soon after the bill was drafted, Nicole testified at her first of dozens of legislative hearings. “She completely captivated that committee,” Murphy told me. “Both Democrats and Republicans. You could see and feel it in the room.”
The legislation was introduced too late in the session to go anywhere in 2018, but the world was beginning to watch: Alec was becoming the poster child not only of high insulin prices but of the human cost of exorbitant pharmaceutical price gouging. The Holt family was also catching the attention of lawmakers at the national level: Later that year, Minnesota Senator Amy Klobuchar joined them for a rally at the state capitol, while Senator Bernie Sanders began telling Alec’s story in stump speeches calling for Medicare for All and featuring Nicole in campaign videos. In 2019, Minnesota Senator Tina Smith introduced a version of the Alec Smith Act in Congress. Klobuchar brought Nicole as her guest to that year’s State of the Union address.
The diabetic community became increasingly active online, with activists like Laura Marston acting as go-to curators of news and analysis related to their life-sustaining drug. The #insulin4all hashtag racked up thousands of posts on Twitter, Facebook, and Instagram. Nicole estimates that more than 1,000 people have reached out to her on social media since she first went public about Alec, including the parents of other children who died rationing their insulin. The most difficult cases, she says, are stories like her own: parents who lost children in their twenties, once they were no longer covered by their parents’ insurance.
Alec’s story also resonated with those parents who were simply struggling with the costs. One of them was fellow Minnesotan Shari Wiltrout, whose twin 14-year-old daughters both have Type 1 diabetes. When Maraya was diagnosed at age 11, Shari and her husband were shocked by the costs. They even went into debt to meet their family’s out-of-pocket maximums (before the insurance kicked in) but didn’t think of their situation in political terms until the Holts’ story appeared on the news a few years later.
“[Alec’s] death hit me really hard,” Wiltrout recalled. “It was the first time I’d ever heard of someone who died because they couldn’t afford insulin.” Wiltrout reached out to Nicole, who by then was connected with the diabetes community through social media. “I realized that some day, my children might be these people who are trying to decide, ‘Can I eat this week because I don’t have enough insulin?’ or ‘Do I have enough for my insulin and rent?’ or ‘Do I have to pick one or the other?’ That kind of flashed before my eyes when Alec died.”
These fledgling activists began forming #insulin4all chapters across the country, some of them loosely affiliated with the group T1International. Today, there are more than 30 active state chapters organizing to eliminate logistical barriers to insulin. One of those chapters is in Minnesota, where both Nicole and Shari are members. A core group of fewer than 10 began meeting in early 2019, ballooning to several dozen since then. “All of us were there because Nicole lost Alec,” Shari told me over lunch in Minneapolis with her daughters, Maraya and Evelyn, and the rest of her family. “Every single person at that table was there because Nicole lost Alec, and she turned his story into power. She turned her grief into power.”
The Alec Smith Emergency Insulin Act was reintroduced in the Minnesota state legislature in 2019, and newly minted advocates began testifying with their own stories: Annette Gentile, who is now disabled, attributes her history of diabetes complications to years of rationing insulin. Alexis Stanley, a student at Concordia University, wishes her mother could leave the job that provides health insurance for Alexis and her sister. Nathan Loewy’s family keeps a separate credit card solely for medical expenses. All of them dread the possibility that their delicate balancing acts will be disrupted, even for a month.
With immense public support for the bill, it passed the state Assembly in the spring and looked poised to pass in the state Senate as well. But then, at the very end of the session, it was spiked behind closed doors. The main point of contention, several sources with knowledge of the negotiations told me, was that Republican legislators were reluctant to finance the bill through the tax on drug companies. Several industry lobbyists had traveled to Minnesota to rail against that provision. As state Senator Matt Little bluntly put it to me, “This is my ninth year in elected office. At no point in time have I seen the influence of money more present than in the insulin debate.”
But even if this broadly popular bill were to pass, it would still leave most diabetics at the mercy of the pharmaceutical industry—not to mention the broader health care industry surrounding it.
Nothing illustrates the failures of the American health care system quite like the insulin cost crisis. Just a few missed doses are capable of sparking tragedy, in a way that isn’t true for other drugs, and yet patients forgo medications every day for cost reasons, at rates roughly equivalent to insulin rationing. We know that patients across the spectrum avoid care due to soaring deductibles and that they are overloaded with medical debt. We know that the stress associated with rationing compounds over the course of a life, and that rich lives outlast poor ones by over a decade. These are, more or less, the same dynamics that play out across the health care system—the staggeringly high costs of good health in America play out all around us; it’s just that insulin makes the stakes glaringly, tragically obvious.
It is hypothetically possible to carve out special rules for insulin price relief without touching the rest of the system. But only a systemic overhaul can address shortcomings in coverage, insurance design, provider access, and drug prices at the same time. Of the health care reform plans currently on the table, only Medicare for All fills all the holes that kill people like Alec Raeshawn-Smith.
In the meantime, Nicole continues to fight for justice, in Alec’s memory. On a warm night last September, she and 100 activists descended on the headquarters of the pharmaceutical giant Eli Lilly in downtown Indianapolis to hold a vigil. Siblings and parents took turns telling stories about their loved ones—all diabetes patients who died because they couldn’t afford their insulin. As the crowd listened, clutching candles and posters, someone up in the corporate office drew the blinds.
Nicole led a chant of the names of the victims: Shane Patrick Boyle, who died visiting his sick mother in Arkansas after his GoFundMe campaign to buy insulin while out of state came up $50 short; Josh Wilkerson, who died after switching to cheaper, outdated insulin to save money before his upcoming wedding; Antavia Worsham, who died when she aged out of her state supplemental insurance program and could no longer afford her insulin; and, finally, Alec Raeshawn-Smith, who died after getting kicked off his mother’s insurance at age 26, when he came up $300 short in paying for his monthly supplies.
Soon afterward, a police officer stepped out of his vehicle and asked Nicole to get out of the street. She refused and was arrested. Months later, James would laugh at the memory, still surprised by just how much his family’s lives have changed: “Before this, she’d never even gotten a speeding ticket.”