Obsidian/00.03 News/The Insulin Empire Edward ...

---

dg-publish: true
Alias: [""]
Tag: ["🫀", "📈", "💊"]
Date: 2024-06-02
DocType: "WebClipping"
Hierarchy:
TimeStamp: 2024-06-02
Link: https://thebaffler.com/after-the-fact/the-insulin-empire-ongweso-jr-sofides
location:
CollapseMetaTable: true

---

Parent:: [[@News|News]]
Read:: 🟥

---

&emsp;

```button
name Save
type command
action Save current file
id Save
```
^button-TheInsulinEmpireNSave

&emsp;

# The Insulin Empire

In *Insulin: A Hundred-Year History*, the medical historian Stuart Bradwel compares insulin to a key that “\[prompts\] our bodies to consume what they need to function.” Insulin shifts glucose, a sugar that serves as your body’s main source of energy, from the bloodstream into cells that will use or store it. It is a hormone—one of those chemical messengers of the endocrine system that collectively orchestrate metabolism, growth, development, reproduction, and other essential bodily processes. It is vital to each and every human being, whether it’s produced within the beta cells of the pancreas or, for the millions of people with insulin-dependent diabetes around the world, in a lab.

A body’s failure to produce enough insulin, known as type 1 diabetes, or to respond to it properly, known as type 2 diabetes, leads to elevated blood sugar levels that can bring about heart attacks, strokes, organ failure, coma, and diabetic ketoacidosis (DKA), where the body cannibalizes its fat and muscle for energy. Living with un- or inadequately treated diabetes is excruciating, but for many with the disease, it first takes going into DKA to be diagnosed and receive adequate care. Unless you have experienced it yourself, it’s hard to understand just how distressing chronic hyperglycemia, or high blood glucose, can feel. Along with rapid weight loss, weakness, fatigue, mood swings, and brain fog, the body experiences an insatiable hunger, breaking into muscle and fat stores in a desperate attempt to remain functional. Similarly, in an effort to flush the excess sugar out of the bloodstream, the body also cues an unquenchable thirst which can cause anxiety, incontinence, and discomfort.

As recently as the early twentieth century, all types of diabetes were often a death sentence; type 1 diabetes was always fatal. In his 1916 article, “The Treatment of Diabetes Mellitus,” early prominent diabetes specialist Elliott P. Joslin noted that most children with diabetes would enter a fatal DKA coma shortly after diagnosis and die within a few years. At the time, treatment wasn’t particularly promising either, with one widespread prescription being “starvation diets”—permanent and severe calorie restriction to avoid high blood sugar levels—that left patients with stunted growth, reduced resistance to infection, and emaciation. In another article decades later, Joslin reflected: “We literally starved the child and adult with the faint hope that something new in treatment would appear. . . . It was no fun to starve a child to let him live.”

The discovery and extraction of insulin between 1921 and 1922 by Canadian surgeon Frederick Banting and his team at the University of Toronto—then-medical student Charles Best, and biochemists James Collip and John Mcleod—changed everything. One of the earliest success stories of insulin treatment was Elizabeth Hughes, daughter of U.S. Secretary of State Charles Evans Hughes. In 1919, after a diabetes diagnosis at the age of eleven, a specialist put Elizabeth on a starvation diet that brought her weight down from sixty-five to fifty-two pounds. When her urine was determined to no longer contain glucose, her diet was relaxed and her weight rose slightly. But when her condition suddenly deteriorated in 1922—and her weight dropped to forty-five pounds—she was brought to Banting and his team to be included in an insulin treatment trial. Hughes not only regained her weight, she went on to live a long life, dying of pneumonia in 1981 at the age of seventy-three.

For many diabetics today, insulin replacement therapy—the measured intake of lab-extracted insulin, now produced by microbes—provides immediate relief to their painful suite of symptoms, and a relatively easy fix to a gruesome and debilitating physiological and psychological experience. But if a patient is so lucky as to be diagnosed with diabetes in time to prevent or ameliorate DKA, they are immediately faced with another disconcerting problem: accessing the treatment, which happens to be one of the most lucrative pharmaceutical products in human history. Just past the centennial of insulin’s discovery, the lack of insulin access and affordability continues to run rampant globally. Of the 537 million people living with diabetes worldwide, around 70 million require insulin. At the same time, more than three in four adults with diabetes reside in low- and middle-income countries where a combination of poverty and predatory pharmaceutical regimes make acquiring sufficient insulin difficult or impossible. Even in higher-income countries, pharmaceutical consortiums control who gets access to insulin, and for how much.

Take the United States: about 38.4 million Americans—including children—have diabetes, and among them, 8.4 million rely on insulin. A 2019 Yale study found that one in four insulin-dependent diabetics have resorted to rationing their insulin supplies: using less insulin than prescribed, stopping insulin therapy, delaying the start of insulin therapy, not filling prescriptions, and engaging in other underuse behaviors related to cost. Many who need insulin not only require adequate dosages but different types of insulins, alongside a suite of devices to monitor and stabilize blood sugar levels as health complications can emerge if they drift too far in either direction. Forgoing adequate insulin dosing can have devastating consequences for type 1 and many type 2 diabetics, and the practice is a substantial driver of the hundreds of thousands of deaths attributable to diabetes complications in the United States each year. With global diabetes rates expected to double by 2050, insulin accessibility and affordability will continue to be a matter of life and death for people with the disease.

### From Good Intentions

The potential for insulin’s market exploitation was almost presciently understood by Banting and his team at the University of Toronto, so in 1923, when Banting and Best were awarded the U.S. patents for insulin and the method for making it, they swiftly sold them to the university for $1 each. “Insulin does not belong to me, it belongs to the world,” Banting explained, believing that profiting off such an essential treatment was not only immoral but detrimental to ensuring universal affordability and access. He and Macleod were awarded the Nobel Prize in Physiology or Medicine later that year.

> Just past the centennial of insulin’s discovery, the lack of insulin access and affordability continues to run rampant globally.

Despite their efforts, things have not gone as the scientists envisioned. The major reason for this can be traced back to the capture of insulin manufacture worldwide by an oligopoly of multinational pharmaceutical firms known as the Big Three—Eli Lilly, Novo Nordisk, and Sanofi—which control more than 90 percent of global insulin markets and the entirety of the U.S. insulin market. At times involved in lockstep collusion schemes, and at others, in transparent attempts to copy one another’s products, the Big Three have thrived in no small part because of obsequious regulations, loopholes in intellectual property law, and an odious health care system, pushing a miracle drug out of reach for millions of people who need it.

A century ago, Banting and his team worked with Connaught Laboratories—then the University of Toronto’s wholly owned, noncommercial, public health entity—to scale up insulin manufacture. In the earliest days, this meant extracting the hormone from the pancreatic tissue of hordes of animals, starting with dogs in their initial experiments, and later cows and pigs. Production not only required a constant supply of animal pancreases but precise methods to extract and purify the insulin, such that variability between lots was minimized and their potency maximized.

Throughout 1922, Connaught was failing to meet demand amid constant supply shortages as they rushed to scale up production, and their process was unable to ensure that insulin was reliably similar across batches to distribute to patients who needed it. Lurking in the wings, ready to capitalize on this moment, was George H.A. Clowes, Eli Lilly’s research director. Over the course of a year, Clowes tried numerous times to court individual members of Banting’s team to pursue a partnership with Eli Lilly and was rebuked each time—the researchers feared working with Eli Lilly would compromise their ethics. Still, Clowes pressed on. In one 1922 letter, he warned that “demand for the product will be such as to lead to attempts on the part of unprincipled individuals to victimize the public unless some steps are taken to arrange for the manufacture of the product by the procedures recommended by Dr. Collip and the control of the products by means of such tests as you and your associates would consider necessary.”

Within a few months, he was successful—in part because the university was simultaneously concerned with crafting a patent regime “in the public interest” that would thwart efforts to monopolize insulin while managing quality and using royalties to further finance medical research. (Eli Lilly would later go out of its way to try and undermine then sabotage the establishment of this system.) The Toronto group crafted an agreement with Eli Lilly that from 1922 to 1923 would give it exclusive license to manufacture and distribute insulin to physicians and hospitals across the Americas; in exchange, they would pay royalties to the University of Toronto, as well as share methodologies for improvements made to their manufacturing process. After a year, Eli Lilly would be free to sell insulin commercially. While the University of Toronto earned $8 million in royalties from licensing insulin between 1923 and 1967, Eli Lilly made out like bandits with $1.1 million in 1923 alone, despite only starting sales in October of that year. Insulin managed to account for 14 percent of the firm’s annual total sales, marking it the highest selling product in the company’s history and responsible for half of the firm’s profit. At the end of the exclusive agreement, Eli Lilly was well-positioned to push a commercial advantage: for another year, they would be the only firm selling insulin in America as others raced to speed up production infrastructure.

The two other members of the Big Three would get their start during the same period, amid that mad scramble for the mass manufacture of animal insulin. August Krogh, a Danish physiologist who won the 1920 Nobel Prize in Physiology or Medicine, and his wife Marie—a type 2 diabetic herself—visited the University of Toronto in 1922 and secured an agreement for Nordic rights. The pair returned to Denmark, where August, along with two cofounders, created Nordisk Insulinlaboratorium and started offering insulin in 1923. The following year, two brothers who worked at Nordisk left the company to create Novo Terapeutisk Laboratorium and offer their own insulin products. These two firms eventually merged into Novo Nordisk in 1989. (You may also know Novo Nordisk as the creator of Ozempic, which was originally used to spur insulin production in type 2 diabetics before its application for rapid weight loss was discovered.) Along with Nordisk Insulinlaboratorium, the German chemical firm Hoechst AG developed its own process for manufacturing insulin in 1923. Two years later, Hoechst AG become a part of Nazi military contractor IG Farben but was spun off after World War II. In a series of subsequent mergers and acquisitions, Hoechst and Connaught Laboratories would end up under French pharma multinational Sanofi-Aventis by 2004.

### Under Their Thumb

From the 1920s to the 1970s, insulin prices in the United States were relatively stable—a phenomenon that stemmed not only from a Department of Justice that pursued insulin price-fixing but, as Natalie Shure writes in *The American Prospect*, Eli Lilly’s first-mover advantage. “Rival firms had no real incentive to compete with an already entrenched, scaled-up manufacturer whose prices were already relatively low,” Shure explains. Things began to change in the 1970s, as the pharmaceutical industry embarked on its glorious struggle to become the most profitable sector of our economy. It was within this political-economic reconfiguration that a new parasitic industry in the pharmaceutical pricing regime emerged: the pharmacy benefit manager, or PBM.

PBMs are entities working with drugmakers and insurance companies to determine which drugs will receive insurance coverage or be included on formularies (lists of drugs covered by health insurance plans), and to negotiate price cuts in the process. Initially formed to provide a much-needed solution to insurers that were unable to efficiently respond to claims as drug coverage increased, the arrangement became a privatized scheme in which drugmakers and insurance companies could acquire and control PBMs of their own. Rarely are the discounts they negotiate passed along to the customers (i.e., the people who need said medicines to live); they’re more often pocketed by these managers instead. Today, just three PBMs—CVS Caremark, Optum Rx (by UnitedHealth Group), and Express Scripts (by Cigna)—control about 80 percent of the U.S. market. The creation of clear pathways for private entities to “patent and commercialize public research,” Shure writes, alongside breakthroughs in DNA sequencing, occurred “at the very moment that both speculative investment and maximizing shareholder value became Wall Street dogma.”

For companies manufacturing insulin, this promised to crack up a sector that had been marked by stability in products, prices, and profits. Until the advent of recombinant human insulin in 1978, changes to insulin since the first wave of animal insulins developed in Canada, Europe, and the United States largely centered around the addition of various molecules and elements to make insulins last longer. The first recombinant DNA human insulin was made by Genentech—the company founded by one of the scientists who first pioneered recombinant DNA technology—and it would soon strike a deal with Eli Lilly to commercialize recombinant human insulin. In 1982, Eli Lilly marketed the product as Humulin R (rapid) and N (NPH, intermediate-acting). This technology priced out smaller manufacturers, resulting in collapses, mergers, and acquisitions that consolidated the market around the Big Three. It also introduced a new market logic that would prove problematic. As researchers David Beran, Edwin A.M. Gale, and John S. Yudkin put it in the journal *Diabetologia*:

> Market control coincided with a commercial incentive to move on from the human molecule, which cannot be patented, to genetically engineered analogues, which can. Commercial logic was matched by clinical enthusiasm, for restructuring the insulin molecule appeared to promise unlimited possibility. However, evolution has optimised insulin’s binding site with its receptor to the point that it is closely identical in many species. This left genetic engineers with limited scope for improvement, and their options were therefore limited to modifications which affect insulin’s absorption and bioavailability.

In the 1990s, we began to see “insulin analogues,” or synthetically produced insulin that is recognizable to and acts on the body at different speeds, with some forms working more quickly in advance of meals or to correct high blood glucose levels and others providing a baseline throughout the day. While short- and long-acting insulins allow tighter control of blood sugar, which mitigates long-term complications that have become more common as diabetics experience longer lifespans, patients have suffered from rising costs as patent “evergreening” has become a normalized business practice within the pharmaceutical industry. Evergreening works by changing a molecule slightly to yield an improvement sufficient to warrant a new patent, which locks out generic competitors from producing the product if it incorporates that improvement. Combined with extensive marketing, pharmaceutical companies also appeal directly to patients in order to popularize their products over “older” versions of the same drugs. When the patent for Lantus, a long-acting insulin by Sanofi, expired in 2015, the company filed seventy-four different patents in an effort to protect the company from competition for the next *thirty-seven years*.

As Merrill Goozer [writes](https://democracyjournal.org/magazine/55/insulin-should-be-free-yes-free/) in *Democracy Journal*, the structure of the pharmaceutical industry has long been selling patented medication to large patient populations to generate large sales. Less than 3 percent of the people in the United States had diabetes through the 1980s (it is now around 11 percent), so additional changes to the structure of insulin markets were required if serious profits were to be generated. Insulin producers looked to the general drug industry, where academic and industry labs focused on “orphan diseases”—rare diseases affecting smaller patient populations—including those linked to specific genetic mutations that new drugs could target. “Scientists began dividing broad disease categories into various sub-types. . . . Treatment varied accordingly,” Goozner writes. It was elegant science, but it also meant the “patient population for any given drug shrank. That’s why most of the targeted medicines developed over the past two decades have come from small, venture capital-funded biotech firms started by scientists whose original research was funded by the National Institutes of Health (NIH), charitable foundations, patient groups, or some combination of those resources.” Big drug companies then buy these biotech firms from venture capitalists at inflated prices, often with drugs already deep in the FDA-approval process. To compensate for the inflated cost, these new owners hike prices for drugs targeting small populations.

It’s in this environment that our insulin oligopoly found its groove. The evergreening of Eli Lilly, Sanofi, and Novo Nordisk’s synthetic insulin has allowed prices for the hormone to soar despite there being no evidence that each new version is any better than the last. They’ve also been successful in rallying opposition to legislation that supports biosimilar generic competition. Biosimilar firms are subject to additional regulatory scrutiny; they must demonstrate that there are no meaningful differences between their products and the original biologic—usually through costly clinical trials. While Europe approved its first “biosimilar” in 2006, the U.S. pharmaceutical industry [stalled progress](https://scholarship.law.missouri.edu/cgi/viewcontent.cgi?article=1553&context=facpubs) on biosimilar regulation until it was sufficiently favorable to incumbent firms, after which a spurt of “[ferocious lobbying](https://www.jstor.org/stable/26716211)” shaped and passed the Biologics Price Competition and Innovation Act in 2009. It wasn’t until 2015 that the FDA approved the first biosimilar, and only by 2019 did it issue its final guidance on allowing biosimilar interchangeability at pharmacies, which is key to letting them replace brand-name drugs.

The crux, as Goozner points out, is that “biosimilar” is industry speak crafted by pharmaceutical firms to convince the public that biologic drugs like insulin—which are produced using a living organism—can’t be generics. In a [2017 research paper](https://www.southcentre.int/wp-content/uploads/2017/11/RP82_The-International-Debate-on-Generic-Medecines-of-Biological-Origin_EN.pdf) for the South Centre, Germán Velásquez observed, “In any debate on the impossibility of producing ‘identical’ drugs, it should be made clear that what is at stake is not identical products but therapeutic equivalents. What matters to the patient, as we have said, is whether or not a drug can prevent, cure or mitigate the effects of the illness.” We can understand the moves by the U.S. insulin cartel’s war on insulin, then, as a war to remake insulin into a more profitable form, its patients into a more profitable demographic, and its market into a noncompetitive oligopoly.

In the face of expiring patents, insulin manufacturers sought to restructure the market around synthetic insulins and delivery systems that could be perpetually patented. To protect themselves from competitors while replacing revenue, the normal state-backed monopoly system in place for drug patents was expanded: earlier forms of insulin were disappeared, biological generics were recast such that they had a higher regulatory hurdle to clear, and incumbents were free enough from competitors to push out their own “authorized” generics and biosimilars as part of a strategy to generate even more revenue and profit.

### Endless Pricks

This leads us to where we are today. Some of the commonly used forms of insulin have long been exponentially more expensive in the United States than in the rest of the OECD; for years, caravans have taken Americans across the border to Canada, where they can buy insulin for a tenth of its U.S. price. Stateside, insulin prices have consistently seen hikes that are eye-watering for patients and mouth-watering for executives and investors. A vial of Eli Lilly’s rapid-acting Humalog (insulin lispro) cost $21 in 1996 but increased to [$332 by 2018](https://www.mayoclinicproceedings.org/article/S0025-6196(19)31008-0/fulltext). A 2016 *JAMA* study [found](https://jamanetwork.com/journals/jama/fullarticle/2510902) that the price of insulin tripled from 2002 to 2013; since 2013, per-person spending on insulin alone has grown larger than that on all other diabetes drugs combined. The result: a hundred years after insulin’s discovery saved insulin-dependent diabetics from almost certain death, some 1.3 million Americans have been forced to embrace permanent and severe insulin-restrictions—limiting their doses, skipping them entirely, or going so far as to take expired insulin.

> A 2019 Yale study found that one in four insulin-dependent diabetics have resorted to rationing their insulin supplies.

A beacon of hope seemed to emerge in March 2023, however, when each of the Big Three [announced](https://www.washingtonpost.com/business/2023/03/01/insulin-prices-eli-lilly/) they would voluntarily cut the prices of various insulin products. Eli Lilly declared the list prices of its most popular insulin products would be decreased by 70 percent, alongside the expansion of a program that caps out-of-pocket costs at $35 for those with private insurance. Novo Nordisk followed suit and said it would cut the wholesale price of multiple insulin products by up to 75 percent. Not to be outdone, Sanofi announced the list price of its most widely prescribed insulin would be cut by 78 percent. These are not insignificant changes. While caps on out-of-pocket expenses offload the cost of drugs onto insurers, who offload it back onto patients through higher premiums, list price cuts prevent that entirely. The motivating—and ultimately limiting—justification for the cuts, however, was not a desire to make insulin more affordable, as the companies insisted. It was a desire to save money.

One major force that pressured the companies to cut prices turned out to be the Medicaid Drug Rebate Program. Under this system, drug companies pay rebates to the federal government and states in exchange for coverage of their drugs under Medicaid. That rebate has two major components. First, there is a base component, which is calculated according to a certain percent of a drug’s “average manufacturer price” (AMP), or the difference between AMP and lowest available price—whichever of those calculations is larger. Then there is an inflationary component that requires drug companies that are raising prices faster than inflation to rebate the difference to Medicaid. That inflationary component means that drugs whose prices rapidly increase could end up paying huge rebates—in fact, more than half of the program’s drug rebate amounts in 2012 were from the inflationary component—but it has been capped at 100 percent of AMP since 2010.

President Biden’s $1.9 trillion American Rescue Plan, passed back in 2021, removed those caps at the beginning of 2024. One [estimate](https://www.bloomberg.com/news/articles/2023-03-14/slashing-insulin-prices-could-make-money-for-lilly-novo-nordisk) suggested that with the removal of the caps, Eli Lilly could’ve been on the hook for an estimated $430 million per year in rebates and Novo Nordisk for some $350 million per year. But with their “voluntary” price cuts, the companies will actually net profits of $85 million and $210 million, respectively. If Eli Lilly hadn’t cut its prices, they would have had to pay Medicaid about [$150 in rebates](https://www.statnews.com/2023/03/06/eli-lilly-insulin-medicaid-rebates) for every vial of Humalog used by a Medicaid beneficiary. In previous years, that number has run even higher: one [study](https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2720753) found that the removal of these caps back in 2017 would’ve cost Eli Lilly $1.7 billion in rebates to Medicaid.

In addition to the ARP, the 2022 Inflation Reduction Act also included a Medicare cap of $35 per month on insulin costs. Medicare, however, is limited to seniors sixty-five or over, which excludes the twenty-one million Americans (more than half of all diabetics in the country) who are younger. This is staggering when you consider that [a 2021 CDC survey](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10061307/) estimated that 71.1 percent of the adults excluded from the Medicare cap are currently rationing their insulin use because of high costs. Still, as a [2023 *JAMA* study](https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2806020) points out, federal policy changes were sufficient to deflate the Big Three’s inflated prices for various insulin products and offer diabetics lifelines for the first time in decades. While impactful, these moves have still left Insulin 4 All activists wanting; of the many kinds of insulin that people with diabetes use, only some are covered by the $35 price cap. Additionally, for Medicare patients who use more than one kind of insulin, as many diabetics do, the $35 cap applies to each insulin, so true costs are likely closer to $70 per month. And this does not include necessary diabetes management technology, like needles, glucometers, test strips, or wearable medical devices—the [costs](https://pubmed.ncbi.nlm.nih.gov/37909353) for which, on average, represent $12,022 of the $19,736 an American diabetic spends on total medical care per year.

### Turn Down for What?

Soon after the IRA Medicare provisions took effect, the Big Three insulin manufacturers began to announce price caps of $35 per month for prefilled insulin pens and vials for people with commercial insurance, savings card programs capping out-of-pocket monthly costs for uninsured people, and [reductions in list prices](https://www.npr.org/2023/03/01/1160339792/eli-lilly-insulin-price) by up to 75 percent for some widely-used insulins. But in practice, a monthly bill of $35 for insulin is still not a reality for many people living with diabetes as implementation of the price-capping system has not been seamless. Ensuring that a pharmacy accepts the savings card can take some self-advocacy on the patient’s end—adding to an already burdensome labyrinth of bureaucratic insurance diabetics must navigate for medical care—and any given pharmacy is not guaranteed to stock their insurance-covered, lower-priced insulins. Impediments remain for people who need particular kinds of insulin, like those that require prior authorization from their insurance company or aren’t covered by the manufacturer’s price caps. And, more importantly, without federal regulation on commercial insurance, Lilly, Novo, and Sanofi’s price caps remain voluntary and could be lifted at any time. Not to mention that with GLP-1 drugs like Ozempic usurping insulin in demand and lucrativeness, it seems likely pharma’s attention will continue to favor non-insulin diabetes medications. Indeed, Novo Nordisk has already announced that Levemir, an insulin analogue it promised would see steep price cuts last year, [will be discontinued instead](https://prospect.org/health/2024-03-14-novo-nordisk-discontinues-insulin-levemir/)—a move likely motivated by the growing number of biological generics to the drug.

> While impactful, these moves have still left Insulin 4 All activists wanting

In the absence of reliably affordable access to insulin, many diabetes advocates remain cautiously optimistic about more rigorous governmental interventions, like procurement, wherein the state purchases lower-priced pharmaceuticals en masse to distribute to people, or public production, wherein the state manufactures (solitarily or in partnership with other entities) its own prescription medications. Some public initiatives, in relying on market solutions as stopgap measures, may fall short of advocacy demands. But publicly produced and procured pharma projects have worked in the United States before, and there is reason to believe that they could work for insulin. The recent [biosimilar insulin project](https://www.npr.org/2023/03/19/1164572757/california-contract-cheap-insulin-calrx#:~:text=Hourly%20News-,California%20enters%20a%20contract%20to%20make%20its%20own%20affordable%20insulin,Gavin%20Newsom%20said.) led by the state of California, in collaboration with nonprofit drugmaker Civica Rx, represents a potential alternative to the monopolization and oligopolies of privately-made insulin. And in the world of procurement, a recent consortium of state health and human services agencies across Connecticut, Nevada, Oregon, and Washington launched ArrayRx, a public PBM which collectively negotiated a [discount pricing system](https://www.nbcconnecticut.com/news/local/free-prescription-drug-discount-card-launches-monday/3114509/) whereby agreed-upon savings are actually passed onto the people buying the medications, not pocketed by middlemen.

Diabetic life has long been constrained and managed by a menagerie of bad-faith actors, from the paternalism undergirding the staunch starvation diets of early diabetes treatment to the pharmaco-medical industry’s stronghold on diabetes medication and technology today. And controlling the access and affordability of insulin has proven to be an, if not the most, integral piece of this regime. But the story of insulin is also one of reclamation: of agency, health education, and autonomy. As Bradwel, the medical historian, puts it, “insulin drags healthcare out of the clinic.”

Despite their irrevocable reliance on the pharmaceutical industry when presented with a diagnosis of insulin-dependent diabetes, the diabetic patient maintains a unique agency in that they are responsible for the lion’s share of their treatment decisions. It has been estimated that type 1 diabetics make [about 180 health-related decisions](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6286423/) per day: self-monitoring blood glucose using continuous glucose monitors (CGMs) and/or glucometers; calculating and administering long-acting insulin to re-up their baselines and short-acting insulin before food and as needed to correct for high blood sugars throughout the day; treating hypoglycemia, or low blood sugar, caused by too much insulin in the blood; and engaging in the mental calculus of anticipating higher or lower insulin sensitivity due to temperature, weather, menstrual phases, sickness, stress, altitude, exercise, sleep, medications, and the other forty-plus known variables that impact blood glucose. Many of these decisions are necessarily made outside the supervision and recommendation of a health care provider.

From volunteering to resource- and supply-sharing, to organizing at the state and federal levels for [#insulin4all](https://www.cbsnews.com/news/insulin-prices-diabetes-activists-hashtags/), diabetes activists and our allies keep each other alive in real-time. They embody the kind of interdependence described by disability justice arts project [Sins Invalid](https://www.sinsinvalid.org/) as the ways in which “we attempt to meet each other’s needs as we build toward liberation, without always reaching for state solutions which can readily extend its control further over our lives.” Until there is a federal cap on insulin pricing protected by the government, grassroots pharma access projects such as the volunteer-run collective [Mutual Aid Diabetes](https://mutualaiddiabetes.com/), and patient advocacy groups like [T1International](https://www.t1international.com/)—which refuses to accept industry funding as they organize for “access to insulin, diabetes supplies, and medical care” for all—will continue to fill the abundant gaps in the health care and regulatory landscapes.

But just as insulin unmistakably, and almost miraculously, transforms a sick body, it has the potential to reconstitute our political economic realities. Medical anthropologist Samantha Gottlieb gestures towards the “paradigm-shifting” potential of the “fantastical empowered” insulin-dependent patient. Unlike the engaged, “compliant” patient of the regulatory-clinical-commercial public health imaginary, the insulin-dependent patient is an “[actor-creator and disrupter](https://blog.castac.org/2019/04/the-fda-patient-empowerment-and-the-type-1-diabetes-communities-in-the-era-of-digital-health/).” Diabetics’ hands remain full as they traipse through multibillion-dollar mazes just to make it through each day, but, as diabetes activists on X have expressed so cogently, #WeAreNotWaiting. When insulin pumps and CGMs were faulty and incompatible, hackers developed a do-it-yourself device looping system for more personalized and precise blood glucose management; when pharma announced insulin shortages, Mutual Aid Diabetes and other groups have worked to give excess supplies to diabetics in need; when people died from rationing their insulin, protestors have demanded justice and gotten life-saving, [emergency access provisions](https://apnews.com/article/9f1dddc363714f632901ead1792683fb) written into state legislation. While the machinations of the pharmaceutical empire and its profiteering bedfellows continue to privilege profits over people, we continue to keep ourselves cared for and alive; we continue to demand guaranteed, protected, and dignified access pathways for insulin and all other drugs and medical technologies people need—not just to survive but to live full and thriving lives.

&emsp;
&emsp;

---
`$= dv.el('center', 'Source: ' + dv.current().Link + ', ' + dv.current().Date.toLocaleString("fr-FR"))`