You heard it in comment sections. You heard it at Thanksgiving tables. You heard it from the cousin who works in insurance and the uncle who made it out and now thinks the formula is universal. If you can’t afford your medication, you should have worked harder. You should have gotten a better job. You should have better insurance. It sounds like personal responsibility. It sounds like the American work ethic. Let it sit there for a moment.
A man wakes up every morning and checks his insulin supply the way someone else might check the weather. He is 34 years old. He works full time as a warehouse supervisor earning $45,000 a year. He has insurance through his employer—a high-deductible plan with a $6,000 deductible and a 30 percent coinsurance after that. His insulin costs $274.70 per vial at list price. He needs roughly four vials per month to manage his Type 1 diabetes. That is $1,098.80 per month, or $13,185.60 per year, before he even touches his deductible. His take-home pay after taxes is around $3,000 per month. Do the math. He cannot afford to live and also afford to stay alive at full dosage. So he rations. He stretches his supply. He skips doses when he feels okay. He has been hospitalized twice for diabetic ketoacidosis. He knows he is gambling. He does it anyway because the alternative is bankruptcy or homelessness, which he believes would kill him slower but just as surely. And when people ask him why he doesn’t just get a better job, he feels shame instead of rage. That redirection of emotion is not an accident. It is the system working exactly as designed.
The belief does two things at once. First, it treats access to life-saving medicine as a reward for economic performance. You earn the right to live. Your body’s continued function becomes contingent on your market value. If you are not productive enough, educated enough, connected enough to secure employment with comprehensive health benefits, then your survival is discretionary. This is not stated outright. It is embedded in the logic of the question itself. Why don’t you have better insurance? The question assumes that access to medicine should be purchased, not guaranteed, and that your failure to purchase it is a failure of character or effort.
Second, the belief redirects your attention from the pricing system to your own paycheck. You stop asking why a vial of insulin costs $300 in America and $30 in Canada. You stop asking why the same drug, made by the same company, is sold at a 90 percent discount across a border that is a four-hour drive from Detroit. You start asking what is wrong with your career choices. You start scanning job postings at two in the morning, looking for the benefits line in the description, wondering if you should go back to school or move to another city or take a second job. You internalize the gap between your income and your medical costs as a personal shortfall. And the moment you do that, the pharmaceutical industry doesn’t need to defend its pricing. You are already defending it for them by blaming yourself.
This is not ancient history. In the 1950s, Jonas Salk developed the polio vaccine. It was funded with public money—donations from the March of Dimes, grants from the National Foundation for Infantile Paralysis. When the vaccine proved successful, Salk was asked in a televised interview who owned the patent. He replied, “Well, the people, I would say. There is no patent. Could you patent the sun?” The vaccine was distributed at cost. It was manufactured by multiple companies under license. There was no monopoly, no price gouging, no rationing. Within two years, polio cases in the United States dropped by 85 percent. It was treated as a public good, not a profit center. That framework—medicine as public infrastructure—lasted for a generation.
Then the architecture changed. The Bayh-Dole Act of 1980 allowed universities and private companies to patent inventions that resulted from federally funded research. The stated goal was to encourage innovation by giving researchers a financial stake in their discoveries. The actual result was that drugs developed with taxpayer dollars became private property, sold back to taxpayers at monopoly prices. Public funding, private profit. The floodgates opened. Pharmaceutical companies began acquiring patents on medications that had been developed with public money, then setting prices with no ceiling and no accountability. The logic of the market replaced the logic of the public good. And once that replacement was complete, the question shifted from “How do we get medicine to people who need it?” to “How much will people pay to stay alive?”
The assumption embedded in the current system is that drug prices reflect research costs, innovation risk, and market fairness. It assumes the system operates like a normal market—that competition lowers prices, that prices reflect value, that consumers can make informed choices. But pharmaceutical pricing is not a market. It is a controlled system. Patents grant 20-year monopolies. During that time, no competitor can sell a generic version. The patent holder controls supply, controls price, and controls access. When the patent expires, companies deploy a strategy called “evergreening”—they make minor modifications to the drug, patent the new version, and extend the monopoly for another two decades. Humalog, a synthetic form of insulin, has been on the market since 1996. It has been reformulated, rebranded, and re-patented multiple times. The price has increased more than 1,200 percent since its introduction.
Pharmacy Benefit Managers negotiate drug prices in secret. They sit between insurers and pharmaceutical companies, theoretically using their leverage to lower costs. In practice, they negotiate rebates for themselves and insurers while keeping list prices high. Patients without insurance, or with high-deductible plans, pay the list price. The PBMs pocket the difference. Three companies—CVS Caremark, Express Scripts, and OptumRx—control nearly 80 percent of the PBM market. They are not required to disclose their rebate agreements. They are not required to pass savings to patients. The system is opaque by design.
Insurance formularies restrict access. A formulary is a list of medications the insurer agrees to cover. If your prescribed insulin is not on the formulary, you pay full price or you switch to a different brand—one that may not work as well for your body but costs the insurer less. Prior authorization requirements force doctors to spend hours on the phone justifying prescriptions to insurance clerks who have no medical training. Denials are common. Appeals take weeks. People ration while they wait.
The FDA approval process costs upward of $2.6 billion per drug, according to a 2014 study from the Tufts Center for the Study of Drug Development. That figure is cited by pharmaceutical companies to justify high prices, but it includes the cost of failures—drugs that never make it to market. It also includes opportunity costs and projected returns, which inflates the number. Independent analyses estimate the actual cost of bringing a drug to market is closer to $100 million to $500 million. Regardless, the high cost creates a barrier that only the largest companies can cross. It eliminates competition. It consolidates power. And it ensures that the patients who need the drugs have no leverage, no alternatives, and no escape.
Insulin was discovered in 1921 by Frederick Banting, Charles Best, and James Collip at the University of Toronto. They sold the patent to the university for one dollar. Banting reportedly said, “Insulin does not belong to me, it belongs to the world.” The idea was that no one should profit from a medication people needed to survive. For decades, insulin was cheap. It was widely available. It saved millions of lives.
A century later, the list price for a single vial of Humalog is $274.70 in the United States. The same vial costs $32 in Canada. The difference is not the drug. It is the system. In 2022, Eli Lilly reported $7.7 billion in profits. Novo Nordisk and Sanofi, the other two companies that control 90 percent of the global insulin market, reported similarly massive earnings. Their combined revenue from insulin alone exceeded $22 billion in 2021. The cost to manufacture a vial of insulin is estimated at less than $10. The price patients pay is not a reflection of production costs. It is a reflection of what a captive market will pay to stay alive.
According to a Yale study published in 2020, one in four Americans with diabetes rations their insulin due to cost. Rationing means skipping doses. It means stretching a vial that should last ten days into fifteen or twenty. It means checking blood sugar less often to save on test strips. It means living in a constant state of calculation—how much can I skip without dying today? The medical consequences are severe. Rationing leads to hyperglycemia, diabetic ketoacidosis, organ damage, amputations, blindness, and death. These are not rare outcomes. They are predictable results of a pricing system that prioritizes profit over survival.
Alec Smith was 26 years old when he aged out of his mother’s insurance. He worked as a restaurant manager. He had insurance through his employer, but it was a high-deductible plan. The monthly cost of his insulin and diabetes supplies was $1,300. He could not afford it. He tried to ration. One month after aging out, he was found dead in his apartment. The cause of death was diabetic ketoacidosis. His mother, Nicole Smith-Holt, has since become an advocate for insulin affordability. She has testified before Congress. She has shared her son’s story hundreds of times. And every time, someone in the comments says he should have worked harder or chosen a better job. The cruelty is the point. The cruelty keeps the system intact.
The human cost is measured in GoFundMe campaigns, in amputations, in early deaths. More than 34 million Americans have diabetes. The American Diabetes Association estimates the total cost of diagnosed diabetes in the U.S. was $327 billion in 2017—$237 billion in direct medical costs and $90 billion in lost productivity. But the psychological cost runs deeper. When you are taught that your inability to afford medicine is a personal failure, you internalize shame instead of directing anger at the system. You stop organizing. You stop demanding change. You die quietly, blaming yourself. And the next patient does the same.
That shame is not accidental. It is cultivated. Every time someone says, “You should have gotten a better job,” they are reinforcing the idea that survival is a personal responsibility, not a collective one. They are protecting the system by making you the problem. And the system benefits from that protection. Eli Lilly benefits. Novo Nordisk benefits. Sanofi benefits. Pharmacy Benefit Managers benefit. Insurers benefit by shifting costs to patients through high-deductible plans. Hospitals benefit from emergency admissions when rationing leads to crisis. Every layer extracts value. The patient pays at every layer.
This is not a market failure. It is a market success. The system is working exactly as it was designed to work. It extracts maximum profit from people who have no choice but to pay. And it does so while maintaining the appearance of fairness by framing the problem as individual rather than structural. If you cannot afford your insulin, the problem is not the price. The problem is you.
Here is what you can do. Find out what your state legislature is doing about drug pricing transparency and Pharmacy Benefit Manager regulation. Twelve states have passed laws capping insulin copays at $25 to $100 per month. Those caps only apply to state-regulated insurance plans, which leaves out millions of people on self-funded employer plans or no insurance at all. If your state has not acted, call your representative and ask why. Be specific. Use numbers. Tell them how much you pay. Tell them how much you ration. Make them say out loud that they think the current system is acceptable.
Support H.R. 6833, the Affordable Insulin Now Act, which would cap insulin costs at $35 per month for Medicare patients and create pressure for private insurers to follow. The bill has been introduced multiple times. It has failed multiple times. It will not pass unless voters make it impossible for their representatives to vote no. That means calls, letters, town halls, and primaries. It means making insulin pricing a single-issue vote.
Join mutual aid networks like the Open Insulin Project or #insulin4all. These groups organize crowdfunding to help people pay for insulin, coordinate cross-border purchasing from Canada, and pressure lawmakers to act. They also work on developing open-source insulin production methods that would break the monopoly entirely. The work is slow. It is necessary.
Document your costs. Keep every receipt. Keep every prior authorization denial. Keep every letter from your insurer explaining why your medication is not covered. Submit your story to the House Committee on Oversight and Reform’s drug pricing investigation. Make your experience evidence. The system relies on your silence. Your documentation breaks that silence.
If insulin costs $10 to produce and $300 to purchase, who decided the other $290 was an acceptable tax on survival? What happens to a democracy when staying alive becomes a luxury good? The answers are in front of you. The system is not broken. It is functioning exactly as intended. The question is whether you will keep blaming yourself, or whether you will start asking who benefits from your shame.