Lectures

On borrowed time: Living with chronic terror in the United States’ insulin crisis

As the United States began closing its borders in March 2020, Americans with diabetes, already under threat from the coronavirus, faced another pandemic hazard: pharmacies were regularly running out of insulin. As Americans emptied store shelves of toilet paper, cleaning detergents, and canned foods, they also stocked up on the prescriptions they needed to obey stay-at-home orders. Health insurance companies began granting COVID-overrides that allowed patients to amass greater amounts of medication, increasing the demand for prescription drugs at the same time that pharmaceutical supply chains were slowed by the pandemic, just as they were for other commodities. As panic over the availability of insulin escalated, Novo Nordisk, one of three insulin manufacturers in the United States, posted a statement on their website cautioning patients to “plan ahead.”

The United States is home to about six million people who depend on insulin to live, of whom roughly 1.6 million are type 1 diabetics. A deadly illness made chronic by its management, type 1 requires constant, vigilant monitoring of blood glucose levels by finger pricks or by wearable machine technology and the constant, vigilant provision of insulins through multiple daily injections or through additional wearable machine technology. Activists liken insulin to air: everyone needs it, and without it you can’t breathe. Without insulin, a type 1 like me will start to die in about two days.

Amid the uncertainties of those early weeks of the pandemic, I found myself checking and rechecking expiration dates on the vials of insulin I had stockpiled in my refrigerator, counting and recounting the months of life they guaranteed should my access to insulin be further interrupted. I considered myself lucky: I had four months, enough to wait through several weeks of delayed deliveries to every Walgreens in my fifty-mile radius in upstate New York. Lucky as I was with my still-refrigerated vials of insulin (not to mention the stash of ½ cc syringes I have been growing since my early 20s), I can assure you that there is little pleasure in counting one’s months left to live in brightly branded pharma materials. It is actually terrifying.

This terror, exacerbated by the emergency of the pandemic, is lived chronically by the one in four type 1s in the United States forced to ration their insulin because they cannot afford it. Over the past two decades, skyrocketing insulin prices have made it increasingly difficult to access the drugs that have made type 1 diabetes understandable as a chronic illness rather than a deadly one. Subsequently, so too are the “extended,” continuous, cyclical temporalities typically ascribed to chronic illness experience increasingly obsolete for understanding what it means to live with type 1 diabetes in the United States. As Carolyn Smith-Morris reminds us, “If…chronicity is no longer defined by the natural course of disease…but by the availability of biotechnical strategies to address them, then the chronicity of illness experience is not a medical fact but a technological, political, and economic one” (2010, p. 21).

From this political economic perspective, I argue that type 1s living through the United States’ current insulin affordability crisis are experiencing chronic illness in another temporal frame, one much more immediately concerned with fatality and how to avoid it. Put colloquially, American type 1s are “living on borrowed time,” a phrase Merriam-Webster defines as “to continue to live past the time one was expected to die and likely to die soon.” From a pharmaceutical industry that has raised the prices of insulin to lethal levels and a government unwilling to regulate it, American type 1s borrow time by rationing their insulin, quite literally making it—and therefore their days and weeks of life—last longer. American type 1s are also finding ways to borrow and to share that time through innovative (though often illegal) mutual aid structures organized under the hashtag #insulin4all.

In what follows, I consider the growth of the #insulin4all movement as both symptom and salve for a diabetic comorbidity emerging in the contemporary United States: chronic terror. I define terror following Peter Sloterdijk, who in his treatise on the emergence of gas agents in 20th century European warfare, “Airquakes,” writes that “terrorism dissolves the difference between violence against people and violence against things in the environment; it is violence against those human-environmental ’things’ without which people cannot remain as people” (2009, 48). Like air made unbreathable by gas agents, pharma price-gouging terrorizes type 1s by attacking those “things”—insulin—without which people living with type 1 cannot remain as people. The deregulated American healthcare industry further terrorizes types 1 by forcing us to cooperate with, i.e. consume from, the assemblage of health insurance providers, insulin manufacturers, and other middle-figures profiting from spiked insulin prices in order to stay alive. By implicating our “biological” desire to live in our own destruction, pharma terrorism produces despair. As Sloterdijk writes,

In the gas war, deep levels of the biological conditions of human beings are implicated in the very attack against them: the inescapable need to breathe is turned against breathers in such a way that they become involuntary accomplices in their own destruction…they, inevitably having to breathe, give themselves over to the unbreathable environment. As Jean-Paul Satre noted, despair is not only an attack of the human against itself, the air attack of the gas terrorist (Gasterroristen) produces in the attacked the despair of being forced to cooperate in the extermination of their own lives, because they cannot breathe. (2009, 47)

For those who ration insulin—and for all of us, and those who care for us—despair comes from the chronic terror of being forced to pay the soaring costs of the drugs without which we cannot live.

The U.S. insulin crisis

In a medico-legal and political economic context where one’s health depends on the ability to pay for it and market regulation is seen as anathema to scientific innovation, pharma found a captive market—and created crisis—among people who depend on insulin to live. The prices of commonly used insulins have risen astronomically since the early 2000s, even as the products have remained mostly unchanged. For example, the list price of Humalog, which I use, has increased more than 1000% since 1999, when it cost $21. In 2018, Humalog was priced at $594 per vial. These price hikes are especially invidious given the original patent for synthetic insulin, discovered in 1921, was sold for $1 with the explicit intention to make the life-saving drug widely available, a glaring irony insulin affordability activists like to emphasize.[1] 

The reasons for such astronomical increases in insulin pricing are both complex and mundane. They amount to the following facts: First, incremental and often indiscriminate innovations in the molecular chemistry of new synthetic insulins have allowed the pharmaceutical industry to deploy a repatenting tactic called “evergreening” to prevent the development of generic insulins (Greene and Riggs 2015). Second, the “big 3” pharmaceutical companies (Eli Lilly, Novo Nordisk, and Sanofi) produce over 90% of the world’s insulin supply and therefore maintain an oligopoly over the industry. Rather than price competitively, these companies have a history of raising insulin prices concurrently—a practice characteristic of cartels which the US Senate Finance Committee began investigating in 2019. Third, the emergence of “pharmacy benefit managers” (PBMs), companies that act as intermediaries between pharmacies and insurers, has generated a 100-billion-dollar rebate and reimbursement system that pharmaceutical companies generally blame for increased list pricing. PBMs obligate patients to seek out rebates through pharma or insurance websites or through enrollment in employer-mandated wellness programs, and thus make it a patient’s responsibility to seek lower drug pricing.

Pharma companies are quick to note that the net prices of insulin (that is, the price a customer pays after insurance and after claiming any rebates) has remained relatively stable over the same time period. This means that raised list prices are primarily impacting the most vulnerable Americans–those with public insurance and the uninsured, the majority of whom are Black, Latinx, and Native American—people who also regularly face medical racism in accessing diabetes care and management technologies and even appropriate diagnoses. Moreover, according to the U.S. Census Bureau, in 2019, 8% of Americans, or 26.1 million people, had no health insurance of any kind at any point during the year. Even those with insurance, but especially those on lower-cost, high-deductible plans, those using Medicare and Medicaid, and young adults aging out of their parents’ insurance coverage at age 26, face enormous obstacles to affording insulin. Significantly, federal aid programs (referred to as 340B) designed to provide drugs at significantly reduced rates to low-income individuals have been corroded by the pharmaceutical industry in the past year—during the pandemic, no less.[2]

Borrowing time: rationing, legal advocacy, and mutual aid

To manage escalating costs of insulin, type 1s have taken a variety of actions. Some people travel to Canada to purchase insulin, without a prescription, at Costco, bringing insulin costs per month from around $1200 to $40. This acquisition method is technically illegal and only available to those living close enough to Canadian borders to travel there—and was of course unavailable for much of the pandemic. Much more commonly, type 1s ration insulin by using less than the prescribed dosage. Rationing insulin will make any type 1 feel sick because elevated bloodsugars cause nausea, headache, and exhaustion, a feeling akin to food poisoning. But rationing logic is ultimately about staying alive: some insulin all the time is better than no insulin in the days or weeks leading up to the next eligible coverage period. To avoid rationing, many endocrinologists overprescribe dosage amounts by 50% or greater, yet it is pharmaceutical and insurance companies that ultimately make decisions about the units of insulin they will cover, even as prescribed dosages vary greatly by individual.

Insulin rationing is extremely dangerous. In 2017, 26-year-old Alec Raeshawn Smith died while rationing insulin one month after aging out of his parents’ insurance plan. A manager at a restaurant, Smith’s $35,000 per year salary disqualified him from federal healthcare assistance (Medicaid) in Minnesota. Having opted out of the high deductible plan available to him through the Affordable Care Act ($450 per month plus a $7000 deductible), Smith faced insulin prices of more than $1000 per month. Journalists covering Smith’s death reported that in the days before he died he told a friend that he could not attend a food truck festival because he “didn’t have enough insulin for that.”

Smith has since become the poster child for the insulin affordability movement and the namesake of a Minnesota law passed in July 2020 regulating the cost of insulin.[3] Immediately after the law was enacted, a pharmaceutical lobbying group that goes by the acronym PhRMA (Pharmaceutical Research and Manufacturers of America) filed suit. Other insulin copay cap laws are currently being debated on state senate floors, and advocates see various state legislation as encouraging steps toward federal law.

In the meantime, in the face of economic injustice and legal prohibition, type 1s are finding other ways to keep each other alive. One of the key functions of the self-named Diabetes Online Community, marked by the hashtags #insulin4all or #DOC, is to provide mutual aid by circulating GoFundMe crowd-sourcing fundraisers from type 1s seeking support for monthly medical costs. As of February 15, 2021, there were 13,760 GoFundMes for insulin or insulin pump supplies. On websites like Reddit, the DOC has also established mechanisms for redistributing insulins and management technology supplies, both which require prescriptions and are therefore illegal to share between patients. Registered NGOs such as T1International and Mutual Aid Diabetes make it very clear on their websites that they cannot accept donated supplies, indicating that such mechanisms for medical supply redistribution must remain unofficial and underground, i.e. on Reddit and Twitter.  

Keeping alive

Smith’s death, and my own practice counting months of life left in refrigerated insulin vials, highlight the despair and terror of keeping alive as an American type 1, as do frequent references to fatality by insulin affordability activists. Consider one activist’s recent Tweet: “My 90 day supply of insulin has a list price of $2599.99…That’s why some of us ration. That’s why some of us die.” In April 2020, CNN broadcast a video-essay on a supply redistribution group based in Salt Lake City under the title “death or debt dilemma” in which the group’s organizer described choosing between monthly house and car payments or prescriptions. Or as another leading activist, Laura Marston, described to BBC, “I was spending $2,880 a month just to keep myself alive – that was more than I was making even working 50 hours a week.” 

Activists must foreground the immediate fatality of lost access to insulin for type 1s because most people do not realize the disease, which shares its surname with the much-stigmatized type 2, presents such dire consequences. Fat-phobia and consumerist “choice” ideologies of health have taught generations of Americans that controlling type 2 diabetes is a matter of diet and exercise and moreover that acquiring it is one’s own fault (see Gálvez, Carney, and Yates-Doerr 2020). This stigma is compounded by mass confusion about the difference in disease etiology between types 1 and 2 diabetes. Countless is the number of times that type 1s are asked if we ate too much candy or told that a great-aunt also suffers our fate (even by anthropologists!). Type 2 not only occupies the public’s imagination of diabetes but much of the biomedical and public health research funding agenda as well, not only because it is more common but also because its onset and decline are understood as preventable.

Fatality is more than a politically motivated talking point, however, when it comes to “chronic living” with type 1. Rather, the unending threat of quick demise is fundamentally shaping the temporality of type 1 illness experience and likewise insulin dependent subjectivities in the United States. This is not the “slow death” of widespread chronic metabolic disorder Lauren Berlant (2008) writes of; this is life constantly, chronically under threat—a threat not only intensified but actually generated by market deregulation and a failing healthcare system.

Major depressive disorder is three times more common for people with diabetes, and psychologists debate whether those prevalence rates justify a new, isolable category of mental illness, which they would call “diabetes distress.” Its features include “significant emotional reactions to the diagnosis, threat of complications, self-management demands, or unsupportive social structures surrounding diabetes” (Kreider 2017, p. 1). Yet “diabetes distress” attached to the demands of self-management presumes consistent access to insulin and other diabetes management technologies. It seems insufficient to describe what most American type 1s have experienced at one point or another and what a substantial portion of us who cannot regularly or easily afford insulin live with chronically—terror—often expressed in those very terms: “I’m out of insulin,” another DOC member posted recently on Twitter, “and I am being held hostage.”


Erin V. Moore is Dr. Carl F. Asseff Assistant Professor in Anthropology and the History of Medicine at The Ohio State University. Her research explores how political economy shapes health interventions and illness experiences. While a postdoc at Columbia’s Mailman School of Public Health, she worked with an interdisciplinary team investigating the economic history of Uganda’s HIV epidemic. Broadly in women’s health and well-being, she has previously written about East African miniskirt bans, development interventions targeting adolescent girls, love and deception in Uganda’s sexual economy, and translating global feminisms. Twitter: @erinv_moore


Notes

[1] Insulin was discovered in 1921 by Charles Best and Frederick Banting, who won a Nobel prize for the discovery, was sold the patent to their formula to the University of Toronto for just $1, insisting that “anyone would be free to prepare the extract, but no one could secure a profitable monopoly” (cited in Greene and Riggs 2015, p. 1171). The Toronto scientists, however, did not have the capacity to scale production of insulin, so in 1923 licensed the rights to patent manufacturing-process improvements to Eli Lilly, one of the “big 3” pharmaceutical companies now responsible for the dangerously high prices of life-extending drugs.

[2] The Endocrine Society Position Statement, 2020. Last year five big pharma companies (including Eli Lilly and Sanofi) drastically chipped away at the federal 340B program, which requires drug manufacturers to provide significantly discounted drugs to safety-net hospitals and other low-income serving healthcare organizations by introducing new and onerous bureaucratic requirements for qualifying hospitals—at the height of the COVID-19 pandemic—many of which have subsequently lost 430b status.

[3] The law provides for emergencies by making Minnesotans in urgent need of insulin eligible for a one-time, 30-day supply of insulin for a $35 copay; the law also creates a longer-term program that requires manufacturers to provide insulin to eligible Minnesotans in 90-day increments for a $50 copay for up to one year with the option to renew annually.

Works Cited

Berlant, Lauren (2008). “Slow Death (Sovereignty, Obesity, Lateral Agency).” Critical Inquiry 33(4): 754-80.

Gálvez, Alyshia, Megan Carney, and Emily Yates-Doerr (2020). “Chronic Disaster: Reimagining Noncommunicable Chronic Disease.” American Anthropologist 122(3):639-640.

Greene, Jeremy A. and Kevin R. Riggs (2015). “Why Is There No Generic Insulin? Historical Origins of a Modern Problem.” Medicine and Society 372(12):1171-1175.

Kreider, Kathryn Evans (2017). “Diabetes Distress or Major Depressive Disorder? A Practical Approach to Diagnosing and Treating Psychological Comorbidities of Diabetes.” Diabetes Therapy 8(1):1-7.

Roy, Tapash and Cathy E. Lloyd (2012). “Epidemiology of Depression and Diabetes: A Systematic Review.” Journal of Affective Disorders 142S1:S8-S21.

Sloterdijk, Peter (2009). “Airquakes,” translated by Eduardo Mendieta. Environment and Planning D: Society and Space 27:41-57.

Smith-Morris, Carolyn (2010). “The Chronicity of Life, the Acuteness of Diagnosis” in Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness, edited by Lenore Manderson and Carolyn Smith-Morris. New Brunswick: Rutgers University Press.



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