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Nicole Smith-Holt and her husband recalled how their son Alec died of diabetic complications in 2017, during a news conference at the Minnesota State Capitol. (Photo: Steve Karnowski/AP Photo)
In June 22, 2017, Alec Raeshawn Smith, a recently promoted restaurant manager with Type 1 diabetes, left his local pharmacy empty-handed. He'd gone in to pick up a month's worth of insulin supplies, which he assumed would set him back around $1000--the amount he and his mother Nicole Smith-Holt had budgeted the month before when he turned 26 and, under Obamacare rules, had to drop off her insurance coverage.
For Alec, that price was already steep: Even with his promotion, he was making $35,000 a year with no benefits. He and Smith-Holt had combed through Minnesota's Obamacare marketplace for months in search of a decent plan, but the affordable ones all had sky-high deductibles. That meant that he'd be paying full price for his insulin for months before his junk insurance kicked in, on top of hundreds of dollars in monthly premiums--sucking up some 80 percent of his take-home pay once he paid the rent. So he made a rational decision: He'd go uninsured, save the cost of the premium, and just pay for his meds out of pocket, while racking up work experience that could serve as a springboard to a better position with health insurance.
As it turned out, it wouldn't have made a difference if Alec had been insured or not: The price of his insulin had apparently gone up again to $1300, which was more than he had in his bank account. Perhaps he felt embarrassed, too proud to borrow money so soon after finally moving out of his parents' place. Perhaps he didn't want anyone to worry about him, and figured he could keep his blood sugar down until payday.
So he left. He never told his mother and he never told his girlfriend. Five days later, he was dead.
The autopsy later determined the cause of death to be ketoacidosis, a complication of diabetes typically brought about by not taking insulin. Recounting hearing the news of her son's death, Smith-Holt didn't quite put everything together at first, wondering if Alec had inadvertently taken too much insulin, inducing hypoglycemic shock. "Rationing insulin never even crossed my mind," she told me. "It wasn't until later, when the medical examiner said to me that Alec had absolutely no insulin left in the apartment whatsoever--every single pen he picked up was completely empty. And he was amazed by how many pens looked like they had been tampered with ... like he was trying to extract whatever little bit was left in them."
In the two years since her son's death, Smith-Holt has fought alongside diabetes patients and their allies to make insulin the public face of the drug-pricing crisis. The story of how an otherwise healthy young adult could die of a $300 shortfall in an apartment full of mutilated insulin cartridges in the richest country on earth is a hundred years in the making. It's a story of what happens when a country delegates both the provision and financing of lifesaving drugs to an oligopolistic private industry, and then prioritizes that sector's business interests above patients. If the grassroots organizers of the #insulin4all campaign get their way, it will become the story of how the diabetes community can force a political reckoning with the ever-rising prescription drug costs that dominate their lives.
TODAY, SOME 30 MILLION Americans are living with diabetes, a chronic disease caused by the pancreas being unable to properly metabolize carbohydrates, leading to high blood sugar levels. Likely cases--judging by a telltale constellation of symptoms including weight loss, frequent urination, and insatiable thirst--are speckled throughout medical texts dating back to antiquity, but were virtually untreatable until the 20th century. For most of its history, a diabetes diagnosis carried with it a death sentence within mere months, a duration that could be prolonged only slightly with near-starvation diets that kept blood sugars low by practically eliminating food (the tactic Holt imagined her son must have tried when he couldn't afford his meds).
Fortunately, a modern diabetic's outlook is far sunnier. A patient can expect to live for decades if their disease is properly managed. For seven million Americans, treatment entails several daily doses of insulin, a synthetic version of the hormone excreted by a healthy pancreas. For Type 1 diabetes patients, uninterrupted access to insulin is especially critical. Their health outcomes depend heavily not only on taking proper doses, but on minimizing variance between blood sugar levels--an imperative that demands a vigilant routine of measurement and monitoring, often facilitated by supplies and multiple variations of insulins. As Type 1 patient Laura Marston described to me the ongoing balancing act: "Imagine you have to live your entire life just as you do today, but you have to play a game of Tetris 24/7 on your cellphone."
It's not a game that T1 patients can opt out of: Just a few days without insulin can be deadly, or trigger severe complications like gangrene or renal failure. But its crippling cost makes a mechanized routine increasingly difficult to pull off. Most T1 diabetics use two or three vials of fast-acting insulin a month, plus a secondary basal insulin, on top of any necessary supplies. But the wholesale prices of the most common insulins tripled from 2007 to 2017. The three pharmaceutical companies that manufacture insulin--Lilly, Novo Nordisk, and Sanofi--rake in billions in profits annually from insulin sales alone, with the U.S. market accounting for 15 percent of global insulin users but almost 50 percent of its worldwide revenues. Insulin ranks among each company's top-selling drugs; one BMJ study showed that prices could be slashed considerably and the drugs would still be profitable.
Media coverage tends to frame skyrocketing insulin prices as a betrayal of the miracle drug's origins, the definitive account of which was offered by historian Michael Bliss in his 1982 classic The Discovery of Insulin. In 1922, months of exhaustive experimentation surgically removing dogs' pancreases to induce diabetes and re-injecting them with an extract made from their former organs finally vindicated the efforts of an orthopedist named Frederick Banting and his small University of Toronto lab team. Not only did their extract keep diabetic dogs alive far longer than the unfortunate control group, but the injections also revitalized human patients so close to death they'd consented to participate in small-scale trials as a last resort.
Realizing the significance of their drug, three members of the Toronto team sold their patent rights to the university for $1 apiece in an effort to protect its integrity from greedy commercial enterprises. That included a pharmaceutical company in Indianapolis called Eli Lilly and Company, which had expressed interest in manufacturing insulin for humans as soon as they caught wind of the Toronto team's research. Having refused to cooperate with Lilly, Banting and his colleagues believed they were protecting future access.
Determined to prevent insulin from becoming a business racket, the Toronto team kept Lilly at bay through months' worth of repeated attempts to collaborate. The university had been doing its best to manufacture insulin on its own, but struggled to meet the demands of even the small group of patients participating in early trials. What limited supply it did produce was subject to shortages and contamination, which Lilly reps were all too happy to emphasize in making their case that a professional, scaled-up manufacturing operation was in the best interests of diabetes patients. Eventually, Banting and his team reluctantly agreed: Lilly was granted exclusive rights to manufacture and distribute insulin in the United States for one year, with European rights going to a Danish firm called Nordisk (later merged to become Novo Nordisk, as it is known today). Thereafter, both firms were entitled to patent any future innovations on their products, and competitors were hypothetically free to enter the market.
FOR NEARLY A HALF-CENTURY, the price stayed relatively affordable for U.S. patients. Arguably, it was precisely this lack of price-gouging that allowed Lilly to maintain de facto dominance over the U.S. insulin market even after their period of exclusivity had ended: Rival firms had no real incentive to compete with an already entrenched, scaled-up manufacturer whose prices were already relatively low. Moreover, there was reason to believe the Department of Justice was prepared to intervene on behalf of exploited diabetes patients, after leveling small antitrust violation fines in 1941 to three players in Lilly's insulin supply chain.
The delicate circumstantial balance that kept insulin prices low for years began to wobble in the 1970s, when a broader neoliberal turn in politics set the stage for the pharmaceutical industry to become the single most profitable sector in the American economy. The Institutional Patent Agreement program introduced by the National Institutes of Health in 1968, as well as the Bayh-Dole Act of 1980, created pathways for private entities to patent and commercialize public research. This emboldened the profit motive within science. Meanwhile, mid-century breakthroughs in DNA sequencing were on the cusp of paying off in the form of groundbreaking new drugs, at the very moment that both speculative investment and maximizing shareholder value became Wall Street dogma. All of this sparked staggering investment in pharmaceutical companies.
For insulin manufacturers, recombinant DNA technology promised to shake up a market that had been relatively placid since the days of Frederick Banting. Insulins had become more purified and precise, but remained fundamentally similar to the pork and bovine versions produced since the 1920s. That changed in 1982, when Eli Lilly debuted Humulin--the first so-called "human insulin," made out of bacteria instead of animal pancreas. Just as it was going off-patent, the company introduced a new fast-acting insulin called Humalog in 1996. Patent evergreening is also common; Sanofi, whose insulin product is called Lantus, has filed 74 different patent applications on just that one drug, meaning it could go without competition for 37 years. As of 2014, the top three insulin manufacturers held 19 active patents on insulins alone.
While research suggests that the new, more expensive insulins offered minimal benefits for many users (particularly those with Type 2 diabetes), Lilly's aggressive marketing campaigns--combined with partnerships with newer, more convenient delivery devices--convinced a majority of health-care providers to prescribe the costliest available medicines. With back-to-back exclusivity patents precluding generic competition for decades, insulin prices began to climb. In 1996, diabetes patient Laura Marston recalled her mother paying $25 for her first-ever vial of Humalog; the same dose runs $275 today.
If it's difficult to pinpoint the exact moment the price-gouging began, it's easy to see how it ends: with patients like Alec Smith dying of arbitrary price hikes that break already stretched budgets. Since her son's death, Nicole Smith-Holt told me, she's met five or six other parents who lost diabetic children at age 26, after they'd become uninsured. Other people she met were fortunate enough to get the drugs they needed, but still described how dramatically ever-rising insulin costs impacted their lives. "You know, I've heard of people having to sell all their possessions or relocate where rent is more affordable," Smith-Holt recounted. "I've heard of people staying at jobs they don't want just to have insurance coverage. I've heard of people dropping out of college, I've heard of people cashing in their retirement just to keep their spouse or child alive ... I've heard of people my age having to move in with their children because they can't afford to live independently with the rising cost of insulin. I've heard of people reaching out through the black market and buying questionable products in dark alleys."
Such desperation isn't just anecdotal: One study recently published in JAMA Internal Medicine found that one in four diabetes patients reports rationing their insulin due to costs. Lead author Dr. Kasia Lipska told me her study was inspired by increasing complaints from clinic patients, who would beg her not to prescribe higher doses for financial reasons. "It's a terrible, terrible situation," she told me by phone. "The conversations are heart-wrenching because the truth is as a clinician I have few choices. It makes me so angry because I wish I could do more."
And however striking her study's results may have been, Lipska stressed that they didn't capture the extent of her subjects' suffering: "That one-in-four number only reflects people who actually used less insulin because of costs, but other people make trade-offs," she explained. "They may be spending less on food or other necessary items, even on other medications."
THE ASTRONOMICAL COSTS STRAINING Lipska's patients and all the others I've talked to stem from a very obvious problem. In the United States, drug companies have near-unilateral power to name their own price, and insulin manufacturers don't face significant competition that might compel them to lower prices. In other industrialized countries, regulatory bodies are more stringent when it comes to which drugs they approve for sale, and aggressively negotiate prices with manufacturers. In the United States, drugmakers need only to prove their drug effective against a placebo rather than existing products, and the government is far less involved in pricing. In the case of Medicare Part D, government negotiating of drug prices is explicitly illegal.
Instead, U.S. drug-pricing negotiations are the responsibility of individual insurance plans, of which there are thousands. Each of them has relatively little leverage against price hikes, which drug manufacturers have every reason to push as high as possible to pay off shareholders, whose investments were predicated on the promise of some of the highest returns in the stock market. If you're a pharma exec whose goal is to maximize short-term profits, then jacking up prices on a drug like insulin--whose millions of patients are practically captive--is a sensible strategy.
Because private insurers are fundamentally ill equipped to negotiate drug prices, another for-profit industry began to rise in the late 1970s promising to do better. So-called pharmacy benefit managers, or PBMs, act on behalf of multiple insurers to negotiate with drug companies as a group, which theoretically gives them more leverage to buy in bulk. But there's mounting evidence that this isn't how PBMs work--because they often get paid in rebates from drug manufacturers, they're often incentivized to keep prices high, the opposite of what they exist to do. Lilly has claimed that, despite rising prices, the price it has been paid for Humalog fell over the past five years, because of all the rebates captured by the PBMs.
Finally, as insurance companies feel the squeeze of rising drug and health-care costs and strive to maximize profits of their own, they've shifted more and more health-care costs onto policyholders themselves. Average deductibles have quadrupled in the past decade, nearly half of all people with employer-based insurance have high-deductible plans, and co-pays have risen or been replaced with coinsurance, a frequently higher percentage of the overall price. Taken altogether, the deterioration of insurance quality and rising list prices mean that individual patients are bearing more and more of the brunt of high drug costs. In other words, $275 isn't just the jumping-off point for an opaque back-and-forth negotiation between Lilly and insurers; it's the amount that untold numbers of diabetics pay out of pocket for a few days worth of medication to stay alive.
At this point, defenders of the pharmaceutical industry would likely point out that high drug prices are a necessary evil to recoup R&Dcosts and facilitate innovation. Extremely high industry profit margins, the fact that pharmaceutical marketing budgets exceed those for R&D, and the relative lack of genuine drug innovation in recent years all cast doubt on this argument. But Lipska is particularly skeptical of it when it comes to insulin. "We're not even talking about rising prices for better products here," she said. "I want to make it clear that we're talking about rising prices for the same product ... there's nothing that's changed about Humalog. It's the same insulin that's just gone up in price and now costs ten times more."
And even when pharma companies do invest in R&D (Lilly sank at least $40 million into developing what would become Humulin, according to a 1980 article in Science), they depend on the vast annals of knowledge unlocked by publicly funded scientific discovery. Government is often the only entity with the will to pursue the long, careful research that would make quarterly profit-seeking executives bristle. "There's a highly symbiotic relationship between publicly funded science and industry-developed innovation," explained Dr. Jing Luo, the lead author on several papers on insulin pricing. "Recombinant human insulin could not have been introduced by Eli Lilly without the discovery of recombinant DNA technology. Where does that come from? None of it is possible without sequencing DNA, or the technologies used to do science around DNA ... you can't do innovation without standing on the giants of publicly funded science."
In a statement, a spokesperson for Novo Nordisk said, "We know that as the healthcare system has changed a growing number of Americans with diabetes struggle to pay for their healthcare, including medicines made by us. As a company focused on improving the lives of people with diabetes, this is not acceptable ... we are focused on doing all we can so these patients can afford their medicine." Lilly and Sanofi did not respond to a request for comment.
There is one proven method for lowering prices: fomenting robust generic competition after the drug goes off-patent. Lilly's patent on fast-acting insulin expired in 2014, but because insulin is a "biologic" drug made from human genetic material as opposed to a simple molecule, manufacturing a biosimilar version is relatively complicated and far from guaranteed to drive prices down. And drug companies fight to keep their exclusivity: When Merck tried to create a biosimilar to Sanofi's Lantus, Sanofi sued and Merck eventually dropped the effort. (Another biosimilar was ultimately approved in 2016, but not until after a similar patent lawsuit.)
But if only one generic enters the market, it typically doesn't make a big price difference--the biosimilar version of Lantus is priced at only 15 percent below the name brand. Studies show that the market price sees a dramatic reduction only after the entry of several generic competitors into the market--begging the question of whether waiting out two decades of exclusivity, followed by the mobilization of numerous different companies to eventually compete prices down, is really the best route to humane drug pricing.
Plenty of politicized diabetes patients like Laura Marston in Washington, D.C., can't afford to wait that long, and have taken up the fight themselves. "We all live this way," she said. "I'm scared all the time. I'm scared if I don't keep fighting they'll just go back to raising the prices. We're almost being forced to fight for our lives because the government won't do it for us, and the toll that takes on someone who already has a chronic illness is time consuming ... because even though I have a stable job, even though I'm insured, god forbid my industry could go in the tank tomorrow ... this is America! Anything can happen."
THOUSANDS OF DIABETES PATIENTS and their allies have joined the #insulin4all campaign, begun by nonprofit T1International in 2014 to force a national dialogue on insulin prices. Advocates have organized rallies at Lilly's Indianapolis headquarters, shaming the company into releasing its own licensed genericHumalog at half price. This is still over $100 per vial more than it sold for in 1996. Lilly's generic is also only available out of pocket; insurers will only be able to get Humalog at full price, with much of that burden passed on in patient deductibles--and more broadly, into our premiums.
Advocates have also forced congressional hearings on insulin, a federal investigation from House Oversight Committee Chair Elijah Cummings, at least two active lawsuits for price fixing, and even state legislation like the recently passed co-pay cap on insulin in Colorado. The law is a nice start, but applies only to state-regulated employer insurance plans and will thus shut out many diabetics who need it, like those in non-qualifying plans or the uninsured.
Other players in the insulin supply chain are scrambling as well. Sanofi has set a fixed price of $99 per month for monthly supplies, but also only for patients paying cash. Express Scripts, one of the largest PBMs, recently created a program to lower out-of-pocket insulin costs; again, this covers only a small section of the patient population, and health plans have to affirmatively pick up the option. Walmart sells an old version of human insulin for $25, but as Lipska explained, it doesn't work for all patients and is incompatible with many new delivery devices. Patient outrage is driving these moves, but they mostly amount to half measures.
As one blogger noted, the recent Colorado legislation--along with most of the measures listed here--doesn't pass the Alec Smith test. Removing all financial barriers to insulin to ensure that all patients have an uninterrupted supply of it would require governmental intervention, not just relying on multinational companies to devise better deals. It might even demand making moves that end our reliance on those firms to make the drugs we need most. Elizabeth Warren has written legislation providing for the public manufacturing of generic drugs, and explicitly stated in the bill that generic insulin would have to be produced within a year of passage. Even President Obama's former head of Medicare and Medicaid, Andy Slavitt, has recommended the total nationalization of the insulin market.
For her part, Nicole Smith-Holt no longer has a relative who needs insulin, but has stayed to fight for others. In early May, she joined eight members of the Minnesota chapter of #insulin4all on a so-called "Caravan to Canada"--a five-hour road trip across the border to demonstrate the pressures on diabetes patients in the United States. Once they arrived, the same vials of insulin that retail for nearly $300 here were being sold for $30 apiece.
Smith-Holt didn't need any insulin, but bought some as a memento. "If I had known that by driving five hours north that I could have saved my son's life for a couple hundred dollars, then he would still be here," she told me after the trip. "Because I would have crawled, I would have swam, I would have biked, I would have done whatever I had to do to get there."
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In June 22, 2017, Alec Raeshawn Smith, a recently promoted restaurant manager with Type 1 diabetes, left his local pharmacy empty-handed. He'd gone in to pick up a month's worth of insulin supplies, which he assumed would set him back around $1000--the amount he and his mother Nicole Smith-Holt had budgeted the month before when he turned 26 and, under Obamacare rules, had to drop off her insurance coverage.
For Alec, that price was already steep: Even with his promotion, he was making $35,000 a year with no benefits. He and Smith-Holt had combed through Minnesota's Obamacare marketplace for months in search of a decent plan, but the affordable ones all had sky-high deductibles. That meant that he'd be paying full price for his insulin for months before his junk insurance kicked in, on top of hundreds of dollars in monthly premiums--sucking up some 80 percent of his take-home pay once he paid the rent. So he made a rational decision: He'd go uninsured, save the cost of the premium, and just pay for his meds out of pocket, while racking up work experience that could serve as a springboard to a better position with health insurance.
As it turned out, it wouldn't have made a difference if Alec had been insured or not: The price of his insulin had apparently gone up again to $1300, which was more than he had in his bank account. Perhaps he felt embarrassed, too proud to borrow money so soon after finally moving out of his parents' place. Perhaps he didn't want anyone to worry about him, and figured he could keep his blood sugar down until payday.
So he left. He never told his mother and he never told his girlfriend. Five days later, he was dead.
The autopsy later determined the cause of death to be ketoacidosis, a complication of diabetes typically brought about by not taking insulin. Recounting hearing the news of her son's death, Smith-Holt didn't quite put everything together at first, wondering if Alec had inadvertently taken too much insulin, inducing hypoglycemic shock. "Rationing insulin never even crossed my mind," she told me. "It wasn't until later, when the medical examiner said to me that Alec had absolutely no insulin left in the apartment whatsoever--every single pen he picked up was completely empty. And he was amazed by how many pens looked like they had been tampered with ... like he was trying to extract whatever little bit was left in them."
In the two years since her son's death, Smith-Holt has fought alongside diabetes patients and their allies to make insulin the public face of the drug-pricing crisis. The story of how an otherwise healthy young adult could die of a $300 shortfall in an apartment full of mutilated insulin cartridges in the richest country on earth is a hundred years in the making. It's a story of what happens when a country delegates both the provision and financing of lifesaving drugs to an oligopolistic private industry, and then prioritizes that sector's business interests above patients. If the grassroots organizers of the #insulin4all campaign get their way, it will become the story of how the diabetes community can force a political reckoning with the ever-rising prescription drug costs that dominate their lives.
TODAY, SOME 30 MILLION Americans are living with diabetes, a chronic disease caused by the pancreas being unable to properly metabolize carbohydrates, leading to high blood sugar levels. Likely cases--judging by a telltale constellation of symptoms including weight loss, frequent urination, and insatiable thirst--are speckled throughout medical texts dating back to antiquity, but were virtually untreatable until the 20th century. For most of its history, a diabetes diagnosis carried with it a death sentence within mere months, a duration that could be prolonged only slightly with near-starvation diets that kept blood sugars low by practically eliminating food (the tactic Holt imagined her son must have tried when he couldn't afford his meds).
Fortunately, a modern diabetic's outlook is far sunnier. A patient can expect to live for decades if their disease is properly managed. For seven million Americans, treatment entails several daily doses of insulin, a synthetic version of the hormone excreted by a healthy pancreas. For Type 1 diabetes patients, uninterrupted access to insulin is especially critical. Their health outcomes depend heavily not only on taking proper doses, but on minimizing variance between blood sugar levels--an imperative that demands a vigilant routine of measurement and monitoring, often facilitated by supplies and multiple variations of insulins. As Type 1 patient Laura Marston described to me the ongoing balancing act: "Imagine you have to live your entire life just as you do today, but you have to play a game of Tetris 24/7 on your cellphone."
It's not a game that T1 patients can opt out of: Just a few days without insulin can be deadly, or trigger severe complications like gangrene or renal failure. But its crippling cost makes a mechanized routine increasingly difficult to pull off. Most T1 diabetics use two or three vials of fast-acting insulin a month, plus a secondary basal insulin, on top of any necessary supplies. But the wholesale prices of the most common insulins tripled from 2007 to 2017. The three pharmaceutical companies that manufacture insulin--Lilly, Novo Nordisk, and Sanofi--rake in billions in profits annually from insulin sales alone, with the U.S. market accounting for 15 percent of global insulin users but almost 50 percent of its worldwide revenues. Insulin ranks among each company's top-selling drugs; one BMJ study showed that prices could be slashed considerably and the drugs would still be profitable.
Media coverage tends to frame skyrocketing insulin prices as a betrayal of the miracle drug's origins, the definitive account of which was offered by historian Michael Bliss in his 1982 classic The Discovery of Insulin. In 1922, months of exhaustive experimentation surgically removing dogs' pancreases to induce diabetes and re-injecting them with an extract made from their former organs finally vindicated the efforts of an orthopedist named Frederick Banting and his small University of Toronto lab team. Not only did their extract keep diabetic dogs alive far longer than the unfortunate control group, but the injections also revitalized human patients so close to death they'd consented to participate in small-scale trials as a last resort.
Realizing the significance of their drug, three members of the Toronto team sold their patent rights to the university for $1 apiece in an effort to protect its integrity from greedy commercial enterprises. That included a pharmaceutical company in Indianapolis called Eli Lilly and Company, which had expressed interest in manufacturing insulin for humans as soon as they caught wind of the Toronto team's research. Having refused to cooperate with Lilly, Banting and his colleagues believed they were protecting future access.
Determined to prevent insulin from becoming a business racket, the Toronto team kept Lilly at bay through months' worth of repeated attempts to collaborate. The university had been doing its best to manufacture insulin on its own, but struggled to meet the demands of even the small group of patients participating in early trials. What limited supply it did produce was subject to shortages and contamination, which Lilly reps were all too happy to emphasize in making their case that a professional, scaled-up manufacturing operation was in the best interests of diabetes patients. Eventually, Banting and his team reluctantly agreed: Lilly was granted exclusive rights to manufacture and distribute insulin in the United States for one year, with European rights going to a Danish firm called Nordisk (later merged to become Novo Nordisk, as it is known today). Thereafter, both firms were entitled to patent any future innovations on their products, and competitors were hypothetically free to enter the market.
FOR NEARLY A HALF-CENTURY, the price stayed relatively affordable for U.S. patients. Arguably, it was precisely this lack of price-gouging that allowed Lilly to maintain de facto dominance over the U.S. insulin market even after their period of exclusivity had ended: Rival firms had no real incentive to compete with an already entrenched, scaled-up manufacturer whose prices were already relatively low. Moreover, there was reason to believe the Department of Justice was prepared to intervene on behalf of exploited diabetes patients, after leveling small antitrust violation fines in 1941 to three players in Lilly's insulin supply chain.
The delicate circumstantial balance that kept insulin prices low for years began to wobble in the 1970s, when a broader neoliberal turn in politics set the stage for the pharmaceutical industry to become the single most profitable sector in the American economy. The Institutional Patent Agreement program introduced by the National Institutes of Health in 1968, as well as the Bayh-Dole Act of 1980, created pathways for private entities to patent and commercialize public research. This emboldened the profit motive within science. Meanwhile, mid-century breakthroughs in DNA sequencing were on the cusp of paying off in the form of groundbreaking new drugs, at the very moment that both speculative investment and maximizing shareholder value became Wall Street dogma. All of this sparked staggering investment in pharmaceutical companies.
For insulin manufacturers, recombinant DNA technology promised to shake up a market that had been relatively placid since the days of Frederick Banting. Insulins had become more purified and precise, but remained fundamentally similar to the pork and bovine versions produced since the 1920s. That changed in 1982, when Eli Lilly debuted Humulin--the first so-called "human insulin," made out of bacteria instead of animal pancreas. Just as it was going off-patent, the company introduced a new fast-acting insulin called Humalog in 1996. Patent evergreening is also common; Sanofi, whose insulin product is called Lantus, has filed 74 different patent applications on just that one drug, meaning it could go without competition for 37 years. As of 2014, the top three insulin manufacturers held 19 active patents on insulins alone.
While research suggests that the new, more expensive insulins offered minimal benefits for many users (particularly those with Type 2 diabetes), Lilly's aggressive marketing campaigns--combined with partnerships with newer, more convenient delivery devices--convinced a majority of health-care providers to prescribe the costliest available medicines. With back-to-back exclusivity patents precluding generic competition for decades, insulin prices began to climb. In 1996, diabetes patient Laura Marston recalled her mother paying $25 for her first-ever vial of Humalog; the same dose runs $275 today.
If it's difficult to pinpoint the exact moment the price-gouging began, it's easy to see how it ends: with patients like Alec Smith dying of arbitrary price hikes that break already stretched budgets. Since her son's death, Nicole Smith-Holt told me, she's met five or six other parents who lost diabetic children at age 26, after they'd become uninsured. Other people she met were fortunate enough to get the drugs they needed, but still described how dramatically ever-rising insulin costs impacted their lives. "You know, I've heard of people having to sell all their possessions or relocate where rent is more affordable," Smith-Holt recounted. "I've heard of people staying at jobs they don't want just to have insurance coverage. I've heard of people dropping out of college, I've heard of people cashing in their retirement just to keep their spouse or child alive ... I've heard of people my age having to move in with their children because they can't afford to live independently with the rising cost of insulin. I've heard of people reaching out through the black market and buying questionable products in dark alleys."
Such desperation isn't just anecdotal: One study recently published in JAMA Internal Medicine found that one in four diabetes patients reports rationing their insulin due to costs. Lead author Dr. Kasia Lipska told me her study was inspired by increasing complaints from clinic patients, who would beg her not to prescribe higher doses for financial reasons. "It's a terrible, terrible situation," she told me by phone. "The conversations are heart-wrenching because the truth is as a clinician I have few choices. It makes me so angry because I wish I could do more."
And however striking her study's results may have been, Lipska stressed that they didn't capture the extent of her subjects' suffering: "That one-in-four number only reflects people who actually used less insulin because of costs, but other people make trade-offs," she explained. "They may be spending less on food or other necessary items, even on other medications."
THE ASTRONOMICAL COSTS STRAINING Lipska's patients and all the others I've talked to stem from a very obvious problem. In the United States, drug companies have near-unilateral power to name their own price, and insulin manufacturers don't face significant competition that might compel them to lower prices. In other industrialized countries, regulatory bodies are more stringent when it comes to which drugs they approve for sale, and aggressively negotiate prices with manufacturers. In the United States, drugmakers need only to prove their drug effective against a placebo rather than existing products, and the government is far less involved in pricing. In the case of Medicare Part D, government negotiating of drug prices is explicitly illegal.
Instead, U.S. drug-pricing negotiations are the responsibility of individual insurance plans, of which there are thousands. Each of them has relatively little leverage against price hikes, which drug manufacturers have every reason to push as high as possible to pay off shareholders, whose investments were predicated on the promise of some of the highest returns in the stock market. If you're a pharma exec whose goal is to maximize short-term profits, then jacking up prices on a drug like insulin--whose millions of patients are practically captive--is a sensible strategy.
Because private insurers are fundamentally ill equipped to negotiate drug prices, another for-profit industry began to rise in the late 1970s promising to do better. So-called pharmacy benefit managers, or PBMs, act on behalf of multiple insurers to negotiate with drug companies as a group, which theoretically gives them more leverage to buy in bulk. But there's mounting evidence that this isn't how PBMs work--because they often get paid in rebates from drug manufacturers, they're often incentivized to keep prices high, the opposite of what they exist to do. Lilly has claimed that, despite rising prices, the price it has been paid for Humalog fell over the past five years, because of all the rebates captured by the PBMs.
Finally, as insurance companies feel the squeeze of rising drug and health-care costs and strive to maximize profits of their own, they've shifted more and more health-care costs onto policyholders themselves. Average deductibles have quadrupled in the past decade, nearly half of all people with employer-based insurance have high-deductible plans, and co-pays have risen or been replaced with coinsurance, a frequently higher percentage of the overall price. Taken altogether, the deterioration of insurance quality and rising list prices mean that individual patients are bearing more and more of the brunt of high drug costs. In other words, $275 isn't just the jumping-off point for an opaque back-and-forth negotiation between Lilly and insurers; it's the amount that untold numbers of diabetics pay out of pocket for a few days worth of medication to stay alive.
At this point, defenders of the pharmaceutical industry would likely point out that high drug prices are a necessary evil to recoup R&Dcosts and facilitate innovation. Extremely high industry profit margins, the fact that pharmaceutical marketing budgets exceed those for R&D, and the relative lack of genuine drug innovation in recent years all cast doubt on this argument. But Lipska is particularly skeptical of it when it comes to insulin. "We're not even talking about rising prices for better products here," she said. "I want to make it clear that we're talking about rising prices for the same product ... there's nothing that's changed about Humalog. It's the same insulin that's just gone up in price and now costs ten times more."
And even when pharma companies do invest in R&D (Lilly sank at least $40 million into developing what would become Humulin, according to a 1980 article in Science), they depend on the vast annals of knowledge unlocked by publicly funded scientific discovery. Government is often the only entity with the will to pursue the long, careful research that would make quarterly profit-seeking executives bristle. "There's a highly symbiotic relationship between publicly funded science and industry-developed innovation," explained Dr. Jing Luo, the lead author on several papers on insulin pricing. "Recombinant human insulin could not have been introduced by Eli Lilly without the discovery of recombinant DNA technology. Where does that come from? None of it is possible without sequencing DNA, or the technologies used to do science around DNA ... you can't do innovation without standing on the giants of publicly funded science."
In a statement, a spokesperson for Novo Nordisk said, "We know that as the healthcare system has changed a growing number of Americans with diabetes struggle to pay for their healthcare, including medicines made by us. As a company focused on improving the lives of people with diabetes, this is not acceptable ... we are focused on doing all we can so these patients can afford their medicine." Lilly and Sanofi did not respond to a request for comment.
There is one proven method for lowering prices: fomenting robust generic competition after the drug goes off-patent. Lilly's patent on fast-acting insulin expired in 2014, but because insulin is a "biologic" drug made from human genetic material as opposed to a simple molecule, manufacturing a biosimilar version is relatively complicated and far from guaranteed to drive prices down. And drug companies fight to keep their exclusivity: When Merck tried to create a biosimilar to Sanofi's Lantus, Sanofi sued and Merck eventually dropped the effort. (Another biosimilar was ultimately approved in 2016, but not until after a similar patent lawsuit.)
But if only one generic enters the market, it typically doesn't make a big price difference--the biosimilar version of Lantus is priced at only 15 percent below the name brand. Studies show that the market price sees a dramatic reduction only after the entry of several generic competitors into the market--begging the question of whether waiting out two decades of exclusivity, followed by the mobilization of numerous different companies to eventually compete prices down, is really the best route to humane drug pricing.
Plenty of politicized diabetes patients like Laura Marston in Washington, D.C., can't afford to wait that long, and have taken up the fight themselves. "We all live this way," she said. "I'm scared all the time. I'm scared if I don't keep fighting they'll just go back to raising the prices. We're almost being forced to fight for our lives because the government won't do it for us, and the toll that takes on someone who already has a chronic illness is time consuming ... because even though I have a stable job, even though I'm insured, god forbid my industry could go in the tank tomorrow ... this is America! Anything can happen."
THOUSANDS OF DIABETES PATIENTS and their allies have joined the #insulin4all campaign, begun by nonprofit T1International in 2014 to force a national dialogue on insulin prices. Advocates have organized rallies at Lilly's Indianapolis headquarters, shaming the company into releasing its own licensed genericHumalog at half price. This is still over $100 per vial more than it sold for in 1996. Lilly's generic is also only available out of pocket; insurers will only be able to get Humalog at full price, with much of that burden passed on in patient deductibles--and more broadly, into our premiums.
Advocates have also forced congressional hearings on insulin, a federal investigation from House Oversight Committee Chair Elijah Cummings, at least two active lawsuits for price fixing, and even state legislation like the recently passed co-pay cap on insulin in Colorado. The law is a nice start, but applies only to state-regulated employer insurance plans and will thus shut out many diabetics who need it, like those in non-qualifying plans or the uninsured.
Other players in the insulin supply chain are scrambling as well. Sanofi has set a fixed price of $99 per month for monthly supplies, but also only for patients paying cash. Express Scripts, one of the largest PBMs, recently created a program to lower out-of-pocket insulin costs; again, this covers only a small section of the patient population, and health plans have to affirmatively pick up the option. Walmart sells an old version of human insulin for $25, but as Lipska explained, it doesn't work for all patients and is incompatible with many new delivery devices. Patient outrage is driving these moves, but they mostly amount to half measures.
As one blogger noted, the recent Colorado legislation--along with most of the measures listed here--doesn't pass the Alec Smith test. Removing all financial barriers to insulin to ensure that all patients have an uninterrupted supply of it would require governmental intervention, not just relying on multinational companies to devise better deals. It might even demand making moves that end our reliance on those firms to make the drugs we need most. Elizabeth Warren has written legislation providing for the public manufacturing of generic drugs, and explicitly stated in the bill that generic insulin would have to be produced within a year of passage. Even President Obama's former head of Medicare and Medicaid, Andy Slavitt, has recommended the total nationalization of the insulin market.
For her part, Nicole Smith-Holt no longer has a relative who needs insulin, but has stayed to fight for others. In early May, she joined eight members of the Minnesota chapter of #insulin4all on a so-called "Caravan to Canada"--a five-hour road trip across the border to demonstrate the pressures on diabetes patients in the United States. Once they arrived, the same vials of insulin that retail for nearly $300 here were being sold for $30 apiece.
Smith-Holt didn't need any insulin, but bought some as a memento. "If I had known that by driving five hours north that I could have saved my son's life for a couple hundred dollars, then he would still be here," she told me after the trip. "Because I would have crawled, I would have swam, I would have biked, I would have done whatever I had to do to get there."
In June 22, 2017, Alec Raeshawn Smith, a recently promoted restaurant manager with Type 1 diabetes, left his local pharmacy empty-handed. He'd gone in to pick up a month's worth of insulin supplies, which he assumed would set him back around $1000--the amount he and his mother Nicole Smith-Holt had budgeted the month before when he turned 26 and, under Obamacare rules, had to drop off her insurance coverage.
For Alec, that price was already steep: Even with his promotion, he was making $35,000 a year with no benefits. He and Smith-Holt had combed through Minnesota's Obamacare marketplace for months in search of a decent plan, but the affordable ones all had sky-high deductibles. That meant that he'd be paying full price for his insulin for months before his junk insurance kicked in, on top of hundreds of dollars in monthly premiums--sucking up some 80 percent of his take-home pay once he paid the rent. So he made a rational decision: He'd go uninsured, save the cost of the premium, and just pay for his meds out of pocket, while racking up work experience that could serve as a springboard to a better position with health insurance.
As it turned out, it wouldn't have made a difference if Alec had been insured or not: The price of his insulin had apparently gone up again to $1300, which was more than he had in his bank account. Perhaps he felt embarrassed, too proud to borrow money so soon after finally moving out of his parents' place. Perhaps he didn't want anyone to worry about him, and figured he could keep his blood sugar down until payday.
So he left. He never told his mother and he never told his girlfriend. Five days later, he was dead.
The autopsy later determined the cause of death to be ketoacidosis, a complication of diabetes typically brought about by not taking insulin. Recounting hearing the news of her son's death, Smith-Holt didn't quite put everything together at first, wondering if Alec had inadvertently taken too much insulin, inducing hypoglycemic shock. "Rationing insulin never even crossed my mind," she told me. "It wasn't until later, when the medical examiner said to me that Alec had absolutely no insulin left in the apartment whatsoever--every single pen he picked up was completely empty. And he was amazed by how many pens looked like they had been tampered with ... like he was trying to extract whatever little bit was left in them."
In the two years since her son's death, Smith-Holt has fought alongside diabetes patients and their allies to make insulin the public face of the drug-pricing crisis. The story of how an otherwise healthy young adult could die of a $300 shortfall in an apartment full of mutilated insulin cartridges in the richest country on earth is a hundred years in the making. It's a story of what happens when a country delegates both the provision and financing of lifesaving drugs to an oligopolistic private industry, and then prioritizes that sector's business interests above patients. If the grassroots organizers of the #insulin4all campaign get their way, it will become the story of how the diabetes community can force a political reckoning with the ever-rising prescription drug costs that dominate their lives.
TODAY, SOME 30 MILLION Americans are living with diabetes, a chronic disease caused by the pancreas being unable to properly metabolize carbohydrates, leading to high blood sugar levels. Likely cases--judging by a telltale constellation of symptoms including weight loss, frequent urination, and insatiable thirst--are speckled throughout medical texts dating back to antiquity, but were virtually untreatable until the 20th century. For most of its history, a diabetes diagnosis carried with it a death sentence within mere months, a duration that could be prolonged only slightly with near-starvation diets that kept blood sugars low by practically eliminating food (the tactic Holt imagined her son must have tried when he couldn't afford his meds).
Fortunately, a modern diabetic's outlook is far sunnier. A patient can expect to live for decades if their disease is properly managed. For seven million Americans, treatment entails several daily doses of insulin, a synthetic version of the hormone excreted by a healthy pancreas. For Type 1 diabetes patients, uninterrupted access to insulin is especially critical. Their health outcomes depend heavily not only on taking proper doses, but on minimizing variance between blood sugar levels--an imperative that demands a vigilant routine of measurement and monitoring, often facilitated by supplies and multiple variations of insulins. As Type 1 patient Laura Marston described to me the ongoing balancing act: "Imagine you have to live your entire life just as you do today, but you have to play a game of Tetris 24/7 on your cellphone."
It's not a game that T1 patients can opt out of: Just a few days without insulin can be deadly, or trigger severe complications like gangrene or renal failure. But its crippling cost makes a mechanized routine increasingly difficult to pull off. Most T1 diabetics use two or three vials of fast-acting insulin a month, plus a secondary basal insulin, on top of any necessary supplies. But the wholesale prices of the most common insulins tripled from 2007 to 2017. The three pharmaceutical companies that manufacture insulin--Lilly, Novo Nordisk, and Sanofi--rake in billions in profits annually from insulin sales alone, with the U.S. market accounting for 15 percent of global insulin users but almost 50 percent of its worldwide revenues. Insulin ranks among each company's top-selling drugs; one BMJ study showed that prices could be slashed considerably and the drugs would still be profitable.
Media coverage tends to frame skyrocketing insulin prices as a betrayal of the miracle drug's origins, the definitive account of which was offered by historian Michael Bliss in his 1982 classic The Discovery of Insulin. In 1922, months of exhaustive experimentation surgically removing dogs' pancreases to induce diabetes and re-injecting them with an extract made from their former organs finally vindicated the efforts of an orthopedist named Frederick Banting and his small University of Toronto lab team. Not only did their extract keep diabetic dogs alive far longer than the unfortunate control group, but the injections also revitalized human patients so close to death they'd consented to participate in small-scale trials as a last resort.
Realizing the significance of their drug, three members of the Toronto team sold their patent rights to the university for $1 apiece in an effort to protect its integrity from greedy commercial enterprises. That included a pharmaceutical company in Indianapolis called Eli Lilly and Company, which had expressed interest in manufacturing insulin for humans as soon as they caught wind of the Toronto team's research. Having refused to cooperate with Lilly, Banting and his colleagues believed they were protecting future access.
Determined to prevent insulin from becoming a business racket, the Toronto team kept Lilly at bay through months' worth of repeated attempts to collaborate. The university had been doing its best to manufacture insulin on its own, but struggled to meet the demands of even the small group of patients participating in early trials. What limited supply it did produce was subject to shortages and contamination, which Lilly reps were all too happy to emphasize in making their case that a professional, scaled-up manufacturing operation was in the best interests of diabetes patients. Eventually, Banting and his team reluctantly agreed: Lilly was granted exclusive rights to manufacture and distribute insulin in the United States for one year, with European rights going to a Danish firm called Nordisk (later merged to become Novo Nordisk, as it is known today). Thereafter, both firms were entitled to patent any future innovations on their products, and competitors were hypothetically free to enter the market.
FOR NEARLY A HALF-CENTURY, the price stayed relatively affordable for U.S. patients. Arguably, it was precisely this lack of price-gouging that allowed Lilly to maintain de facto dominance over the U.S. insulin market even after their period of exclusivity had ended: Rival firms had no real incentive to compete with an already entrenched, scaled-up manufacturer whose prices were already relatively low. Moreover, there was reason to believe the Department of Justice was prepared to intervene on behalf of exploited diabetes patients, after leveling small antitrust violation fines in 1941 to three players in Lilly's insulin supply chain.
The delicate circumstantial balance that kept insulin prices low for years began to wobble in the 1970s, when a broader neoliberal turn in politics set the stage for the pharmaceutical industry to become the single most profitable sector in the American economy. The Institutional Patent Agreement program introduced by the National Institutes of Health in 1968, as well as the Bayh-Dole Act of 1980, created pathways for private entities to patent and commercialize public research. This emboldened the profit motive within science. Meanwhile, mid-century breakthroughs in DNA sequencing were on the cusp of paying off in the form of groundbreaking new drugs, at the very moment that both speculative investment and maximizing shareholder value became Wall Street dogma. All of this sparked staggering investment in pharmaceutical companies.
For insulin manufacturers, recombinant DNA technology promised to shake up a market that had been relatively placid since the days of Frederick Banting. Insulins had become more purified and precise, but remained fundamentally similar to the pork and bovine versions produced since the 1920s. That changed in 1982, when Eli Lilly debuted Humulin--the first so-called "human insulin," made out of bacteria instead of animal pancreas. Just as it was going off-patent, the company introduced a new fast-acting insulin called Humalog in 1996. Patent evergreening is also common; Sanofi, whose insulin product is called Lantus, has filed 74 different patent applications on just that one drug, meaning it could go without competition for 37 years. As of 2014, the top three insulin manufacturers held 19 active patents on insulins alone.
While research suggests that the new, more expensive insulins offered minimal benefits for many users (particularly those with Type 2 diabetes), Lilly's aggressive marketing campaigns--combined with partnerships with newer, more convenient delivery devices--convinced a majority of health-care providers to prescribe the costliest available medicines. With back-to-back exclusivity patents precluding generic competition for decades, insulin prices began to climb. In 1996, diabetes patient Laura Marston recalled her mother paying $25 for her first-ever vial of Humalog; the same dose runs $275 today.
If it's difficult to pinpoint the exact moment the price-gouging began, it's easy to see how it ends: with patients like Alec Smith dying of arbitrary price hikes that break already stretched budgets. Since her son's death, Nicole Smith-Holt told me, she's met five or six other parents who lost diabetic children at age 26, after they'd become uninsured. Other people she met were fortunate enough to get the drugs they needed, but still described how dramatically ever-rising insulin costs impacted their lives. "You know, I've heard of people having to sell all their possessions or relocate where rent is more affordable," Smith-Holt recounted. "I've heard of people staying at jobs they don't want just to have insurance coverage. I've heard of people dropping out of college, I've heard of people cashing in their retirement just to keep their spouse or child alive ... I've heard of people my age having to move in with their children because they can't afford to live independently with the rising cost of insulin. I've heard of people reaching out through the black market and buying questionable products in dark alleys."
Such desperation isn't just anecdotal: One study recently published in JAMA Internal Medicine found that one in four diabetes patients reports rationing their insulin due to costs. Lead author Dr. Kasia Lipska told me her study was inspired by increasing complaints from clinic patients, who would beg her not to prescribe higher doses for financial reasons. "It's a terrible, terrible situation," she told me by phone. "The conversations are heart-wrenching because the truth is as a clinician I have few choices. It makes me so angry because I wish I could do more."
And however striking her study's results may have been, Lipska stressed that they didn't capture the extent of her subjects' suffering: "That one-in-four number only reflects people who actually used less insulin because of costs, but other people make trade-offs," she explained. "They may be spending less on food or other necessary items, even on other medications."
THE ASTRONOMICAL COSTS STRAINING Lipska's patients and all the others I've talked to stem from a very obvious problem. In the United States, drug companies have near-unilateral power to name their own price, and insulin manufacturers don't face significant competition that might compel them to lower prices. In other industrialized countries, regulatory bodies are more stringent when it comes to which drugs they approve for sale, and aggressively negotiate prices with manufacturers. In the United States, drugmakers need only to prove their drug effective against a placebo rather than existing products, and the government is far less involved in pricing. In the case of Medicare Part D, government negotiating of drug prices is explicitly illegal.
Instead, U.S. drug-pricing negotiations are the responsibility of individual insurance plans, of which there are thousands. Each of them has relatively little leverage against price hikes, which drug manufacturers have every reason to push as high as possible to pay off shareholders, whose investments were predicated on the promise of some of the highest returns in the stock market. If you're a pharma exec whose goal is to maximize short-term profits, then jacking up prices on a drug like insulin--whose millions of patients are practically captive--is a sensible strategy.
Because private insurers are fundamentally ill equipped to negotiate drug prices, another for-profit industry began to rise in the late 1970s promising to do better. So-called pharmacy benefit managers, or PBMs, act on behalf of multiple insurers to negotiate with drug companies as a group, which theoretically gives them more leverage to buy in bulk. But there's mounting evidence that this isn't how PBMs work--because they often get paid in rebates from drug manufacturers, they're often incentivized to keep prices high, the opposite of what they exist to do. Lilly has claimed that, despite rising prices, the price it has been paid for Humalog fell over the past five years, because of all the rebates captured by the PBMs.
Finally, as insurance companies feel the squeeze of rising drug and health-care costs and strive to maximize profits of their own, they've shifted more and more health-care costs onto policyholders themselves. Average deductibles have quadrupled in the past decade, nearly half of all people with employer-based insurance have high-deductible plans, and co-pays have risen or been replaced with coinsurance, a frequently higher percentage of the overall price. Taken altogether, the deterioration of insurance quality and rising list prices mean that individual patients are bearing more and more of the brunt of high drug costs. In other words, $275 isn't just the jumping-off point for an opaque back-and-forth negotiation between Lilly and insurers; it's the amount that untold numbers of diabetics pay out of pocket for a few days worth of medication to stay alive.
At this point, defenders of the pharmaceutical industry would likely point out that high drug prices are a necessary evil to recoup R&Dcosts and facilitate innovation. Extremely high industry profit margins, the fact that pharmaceutical marketing budgets exceed those for R&D, and the relative lack of genuine drug innovation in recent years all cast doubt on this argument. But Lipska is particularly skeptical of it when it comes to insulin. "We're not even talking about rising prices for better products here," she said. "I want to make it clear that we're talking about rising prices for the same product ... there's nothing that's changed about Humalog. It's the same insulin that's just gone up in price and now costs ten times more."
And even when pharma companies do invest in R&D (Lilly sank at least $40 million into developing what would become Humulin, according to a 1980 article in Science), they depend on the vast annals of knowledge unlocked by publicly funded scientific discovery. Government is often the only entity with the will to pursue the long, careful research that would make quarterly profit-seeking executives bristle. "There's a highly symbiotic relationship between publicly funded science and industry-developed innovation," explained Dr. Jing Luo, the lead author on several papers on insulin pricing. "Recombinant human insulin could not have been introduced by Eli Lilly without the discovery of recombinant DNA technology. Where does that come from? None of it is possible without sequencing DNA, or the technologies used to do science around DNA ... you can't do innovation without standing on the giants of publicly funded science."
In a statement, a spokesperson for Novo Nordisk said, "We know that as the healthcare system has changed a growing number of Americans with diabetes struggle to pay for their healthcare, including medicines made by us. As a company focused on improving the lives of people with diabetes, this is not acceptable ... we are focused on doing all we can so these patients can afford their medicine." Lilly and Sanofi did not respond to a request for comment.
There is one proven method for lowering prices: fomenting robust generic competition after the drug goes off-patent. Lilly's patent on fast-acting insulin expired in 2014, but because insulin is a "biologic" drug made from human genetic material as opposed to a simple molecule, manufacturing a biosimilar version is relatively complicated and far from guaranteed to drive prices down. And drug companies fight to keep their exclusivity: When Merck tried to create a biosimilar to Sanofi's Lantus, Sanofi sued and Merck eventually dropped the effort. (Another biosimilar was ultimately approved in 2016, but not until after a similar patent lawsuit.)
But if only one generic enters the market, it typically doesn't make a big price difference--the biosimilar version of Lantus is priced at only 15 percent below the name brand. Studies show that the market price sees a dramatic reduction only after the entry of several generic competitors into the market--begging the question of whether waiting out two decades of exclusivity, followed by the mobilization of numerous different companies to eventually compete prices down, is really the best route to humane drug pricing.
Plenty of politicized diabetes patients like Laura Marston in Washington, D.C., can't afford to wait that long, and have taken up the fight themselves. "We all live this way," she said. "I'm scared all the time. I'm scared if I don't keep fighting they'll just go back to raising the prices. We're almost being forced to fight for our lives because the government won't do it for us, and the toll that takes on someone who already has a chronic illness is time consuming ... because even though I have a stable job, even though I'm insured, god forbid my industry could go in the tank tomorrow ... this is America! Anything can happen."
THOUSANDS OF DIABETES PATIENTS and their allies have joined the #insulin4all campaign, begun by nonprofit T1International in 2014 to force a national dialogue on insulin prices. Advocates have organized rallies at Lilly's Indianapolis headquarters, shaming the company into releasing its own licensed genericHumalog at half price. This is still over $100 per vial more than it sold for in 1996. Lilly's generic is also only available out of pocket; insurers will only be able to get Humalog at full price, with much of that burden passed on in patient deductibles--and more broadly, into our premiums.
Advocates have also forced congressional hearings on insulin, a federal investigation from House Oversight Committee Chair Elijah Cummings, at least two active lawsuits for price fixing, and even state legislation like the recently passed co-pay cap on insulin in Colorado. The law is a nice start, but applies only to state-regulated employer insurance plans and will thus shut out many diabetics who need it, like those in non-qualifying plans or the uninsured.
Other players in the insulin supply chain are scrambling as well. Sanofi has set a fixed price of $99 per month for monthly supplies, but also only for patients paying cash. Express Scripts, one of the largest PBMs, recently created a program to lower out-of-pocket insulin costs; again, this covers only a small section of the patient population, and health plans have to affirmatively pick up the option. Walmart sells an old version of human insulin for $25, but as Lipska explained, it doesn't work for all patients and is incompatible with many new delivery devices. Patient outrage is driving these moves, but they mostly amount to half measures.
As one blogger noted, the recent Colorado legislation--along with most of the measures listed here--doesn't pass the Alec Smith test. Removing all financial barriers to insulin to ensure that all patients have an uninterrupted supply of it would require governmental intervention, not just relying on multinational companies to devise better deals. It might even demand making moves that end our reliance on those firms to make the drugs we need most. Elizabeth Warren has written legislation providing for the public manufacturing of generic drugs, and explicitly stated in the bill that generic insulin would have to be produced within a year of passage. Even President Obama's former head of Medicare and Medicaid, Andy Slavitt, has recommended the total nationalization of the insulin market.
For her part, Nicole Smith-Holt no longer has a relative who needs insulin, but has stayed to fight for others. In early May, she joined eight members of the Minnesota chapter of #insulin4all on a so-called "Caravan to Canada"--a five-hour road trip across the border to demonstrate the pressures on diabetes patients in the United States. Once they arrived, the same vials of insulin that retail for nearly $300 here were being sold for $30 apiece.
Smith-Holt didn't need any insulin, but bought some as a memento. "If I had known that by driving five hours north that I could have saved my son's life for a couple hundred dollars, then he would still be here," she told me after the trip. "Because I would have crawled, I would have swam, I would have biked, I would have done whatever I had to do to get there."
"What is it going to take for Senate Republicans to oppose this unfit nominee? Every Republican senator who votes to confirm Bove will be complicit in undermining the rule of law and judicial independence."
After a second whistleblower came forward claiming that Emil Bove III instructed attorneys at the U.S. Department of Justice to ignore federal court orders, his critics on Friday renewed calls for the Senate to reject the DOJ official's appointment as an appellate judge.
"Evidence is growing that Emil Bove urged Department of Justice lawyers to ignore federal court orders. That alone should disqualify him from a lifetime appointment to one of the most powerful courts in our country," said Sean Eldridge, president and founder of the progressive advocacy group Stand Up America, in a statement.
U.S. President Donald Trump announced in late May that he would nominate Bove, his former personal attorney, to the U.S. Court of Appeals for the 3rd Circuit. Then, last month, a whistleblower complaint was filed by Erez Reuveni, who was fired from the DOJ's Office of Immigration Litigation in April after expressing concerns about the Kilmar Ábrego García case.
On Friday, as the Republican-controlled Senate was moving toward confirming Bove, the group Whistleblower Aid announced that another former Justice Department lawyer, whose name is not being disclosed, "has lawfully disclosed evidence to the DOJ's Office of the Inspector General that corroborates the thrust of the whistleblower claims" from Reuveni.
"Loyalty to one individual must never outweigh supporting and protecting the fundamental rights of those living in the United States."
"What we're seeing here is something I never thought would be possible on such a wide scale: federal prosecutors appointed by the Trump administration intentionally presenting dubious if not outright false evidence to a court of jurisdiction in cases that impact a person's fundamental rights not only under our Constitution, but their natural rights as humans," said Whistleblower Aid chief legal counsel Andrew Bakaj in a statement.
"What this means is that federal career attorneys who swore an oath to uphold the Constitution are now being pressured to abdicate that promise in favor of fealty to a single person, specifically Donald Trump. Loyalty to one individual must never outweigh supporting and protecting the fundamental rights of those living in the United States," Bakaj added. "Our client and Mr. Reuveni are true patriots—prioritizing their commitment to democracy over advancing their careers."
Bove has also faced mounting opposition—including from dozens of former judges—due to his embrace of the so-called "unitary executive theory" as well as his positions on a potential third Trump term and the January 6, 2021 attack on the U.S. Capitol by the president's supporters.
The Senate on Thursday voted 50-48 to proceed with the consideration of Bove's nomination. Republican Sens. Lisa Murkowski (Alaska) and Susan Collins (Maine) joined all Democrats in opposition. Responding in a statement, Demand Justice interim executive director Maggie Jo Buchanan warned that "Bove will be a stain on the judiciary if confirmed."
"Voting to confirm Trump's judicial nominees to lifetime seats on the federal bench, as he wages a war on the very idea of judicial independence, is an unacceptable choice for any senator who believes in our democracy and the importance of individual rights," said Buchanan, who also blasted the Senate's Tuesday confirmation of Joshua Divine to be a U.S. district judge for the Eastern and Western Districts of Missouri.
"Trump and his MAGA allies are helping him consolidate power in the executive branch, attacking judges who dare to rule against his interests, and targeting Trump's perceived political enemies—all while seemingly unconcerned about the future this sets up for our nation," she stressed. "Every senator will have to decide where they stand when it comes to this assault on our country's values—and that choice will not be forgotten."
After news of the second whistleblower complaint broke on Friday, Stand Up America's Eldridge declared that "again and again, Bove has proven he lacks the temperament, integrity, and independence to serve on the federal bench. He's nothing more than a political foot soldier doing Trump's bidding."
"What is it going to take for Senate Republicans to oppose this unfit nominee?" he added. "Every Republican senator who votes to confirm Bove will be complicit in undermining the rule of law and judicial independence."
"This administration deserves no credit for just barely averting a crisis they themselves set in motion," said one Democratic senator.
While welcoming reporting that the Trump administration will release more than $5 billion in federal funding for schools that it has been withholding for nearly a month, U.S. educators and others said Friday that the funds should never have been held up in the first place and warned that the attempt to do so was just one part of an ongoing campaign to undermine public education.
The Trump administration placed nearly $7 billion in federal education funding for K-12 public schools under review last month, then released $1.3 billion of it last week amid legal action and widespread backlash. An administration official speaking on condition of anonymity told The Washington Post that all reviews of remaining funding are now over.
"There is no good reason for the chaos and stress this president has inflicted on students, teachers, and parents across America for the last month, and it shouldn't take widespread blowback for this administration to do its job and simply get the funding out the door that Congress has delivered to help students," U.S. Senate Appropriations Committee Vice Chair Patty Murray (D-Wash.) said Friday.
"This administration deserves no credit for just barely averting a crisis they themselves set in motion," Murray added. "You don't thank a burglar for returning your cash after you've spent a month figuring out if you'd have to sell your house to make up the difference."
🚨After unlawfully withholding billions in education funding for schools, the Trump Admin. has reversed course.This is a massive victory for students, educators, & families who depend on these essential resources.And it's a testament to public pressure & relentless organizing.
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— Congresswoman Ayanna Pressley (@pressley.house.gov) July 25, 2025 at 1:42 PM
Skye Perryman, president and CEO of Democracy Forward—which represents plaintiffs in a lawsuit challenging the Trump administration's funding freeze—said Friday that "if these reports are true, this is a major victory for public education and the communities it serves."
"This news following our legal challenge is a direct result of collective action by educators, families, and advocates across the country," Perryman asserted. "These funds are critical to keeping teachers in classrooms, supporting students in vulnerable conditions, and ensuring schools can offer the programs and services that every child deserves."
"While this development shows that legal and public pressure can make a difference, school districts, parents, and educators should not have to take the administration to court to secure funds for their students," she added. "Our promise to the people remains: We will go to court to protect the rights and well-being of all people living in America."
Democratic Arizona Attorney General Kris Mayes—a plaintiff in a separate lawsuit challenging the withholding—attributed the administration's backpedaling to litigatory pressure, arguing that the funding "should never have been withheld in the first place."
They released the 7 B IN SCHOOL FUNDS!! This is a huge win. It means fighting back matters. Fighting for what kids & communities need is always the right thing to do! www.washingtonpost.com/education/20...
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— Randi Weingarten (@rweingarten.bsky.social) July 25, 2025 at 11:46 AM
Becky Pringle, president of the National Education Association—the largest U.S. labor union—said in a statement: "Playing games with students' futures has real-world consequences. School districts in every state have been scrambling to figure out how they will continue to meet student needs without this vital federal funding, and many students in parts of the country have already headed back to school. These reckless funding delays have undermined planning, staffing, and support services at a time when schools should be focused on preparing students for success."
"Sadly, this is part of a broader pattern by this administration of undermining public education—starving it of resources, sowing distrust, and pushing privatization at the expense of the nation's most vulnerable students," Pringle added. "And they are doing this at the same time Congress has passed a budget bill that will devastate our students, schools, and communities by slashing funds meant for public education, healthcare, and keeping students from their school meals—all to finance massive tax breaks for billionaires."
While expanding support for private education, the One Big Beautiful Bill Act signed by President Donald Trump earlier this month weakens public school programs including before- and after-school initiatives and services for English language learners.
"Sadly, this is part of a broader pattern by this administration of undermining public education."
Trump also signed an executive order in March directing Education Secretary Linda McMahon to begin the process of shutting down the Department of Education—a longtime goal of Project 2025, the Heritage Foundation-led roadmap for a far-right takeover and gutting of the federal government closely linked to Trump, despite his unconvincing efforts to distance himself from the highly controversial and unpopular plan.
Earlier this week, the nonpartisan Government Accountability Office determined that the U.S. Health and Human Services Department illegally impounded crucial funds from the Head Start program, which provides comprehensive early childhood education, health, nutrition, and other services to low-income families.
"Instead of spending the last many weeks figuring out how to improve after-school options and get our kids' reading and math scores up, because of President Trump, communities across the country have been forced to spend their time cutting back on tutoring options and sorting out how many teachers they will have to lay off," Murray noted.
"It's time for President Trump, Secretary McMahon, and [Office of Management and Budget Director] Russ Vought to stop playing games with students' futures and families' livelihoods—and end their illegal assault on our students and their schools," the senator added.
"You want history books to not record you as an evil genocide supporter?" said one organizer. "You need to actually make an impact, NOW."
U.S. college students are still facing punishment for protesting Israel's U.S.-backed bombardment of Gaza and its starvation of more than 2 million Palestinians there, with Columbia University announcing this week the suspension and expulsion of dozens of students who spoke out over the past year.
But a number of observers have pointed to a shift in the rhetoric of some of the student organizers' biggest detractors in recent days, with former Secretary of State Hillary Clinton notably saying Thursday that "thousands of children in Gaza are at risk of starvation while trucks full of food sit waiting across the border" and calling for "the full flow of humanitarian assistance" to be restored.
Clinton didn't mention the Israeli blockade that has kept food from reaching Palestinians, more than 120 of whom have now died of starvation, or the at least $12.5 billion in military aid the U.S. has provided to Israel since the blockade first began in October 2023—in violation of U.S. laws prohibiting the government from giving military aid to countries that block humanitarian aid.
The former Democratic presidential nominee also didn't acknowledge the remarks she made in May 2024 about the campus protests that were spreading across the country, with students demanding that their schools divest from companies that work with the Israeli government and that the country end its support for the Israel Defense Forces (IDF).
At the time, Clinton said students who oppose Israel's policies in Gaza and the West Bank "don't know very much" about the conflict there. Clinton and other politicians from both the Democratic and Republican parties have repeated the familiar phrase, "Israel has a right to defend itself" as the IDF has attacked so-called "safe zones," hospitals, and refugee camps.
Some suggested her comments on Thursday appeared to be those of an influential political figure who's come to a realization about the situation that both the Biden and Trump administrations, with bipartisan support from Congress, have helped to bring about in Gaza.
"Seems mostly like all the recent photos of starving children are responsible for this shift, though humanitarian aid groups have been warning about this for months and months," said Washington Post reporter Jeff Stein.
One observer said Clinton and a number of European leaders are speaking out now because Israel has already "carried out their final solution."
As Common Dreams reported this week, Integrated Food Security Phase Classification has said that 85% of people in Gaza are now in Phase 5 of famine, defined at "an extreme deprivation of food."
New York Times columnist Megan Stack said she welcomed anyone who is "[waking] up" to the reality of man-made mass starvation made possible by U.S. support, but called it "an absolute indictment of the center-left, such as it is, that it took pictures of dying, skeletal babies with trash bags for diapers to muster this pale response."
"Subtext: We can stomach mass bombings, but starvation is a bridge too far," said Stack.
The comments from Clinton coincided with a shift in the corporate media's coverage of Gaza, with major outlets focusing heavily on the impact of starvation.
Organizer and attorney Aaron Regunberg said that instead of simply doing "reputational damage control by speaking up in these very last moments," powerful political leaders must "shut shit down."
"You want history books to not record you as an evil genocide supporter?" said Regunberg. "One speech now—after countless speeches condemning those who have been speaking out—ain't gonna cut it... You need to go to Gaza. You need to actually make an impact, NOW."
Progressive organizer Lindsey Boylan wondered whether establishment leaders "will ever admit that smearing all protests to stop the genocide actually contributed to the genocide."
"Few people could have played a more pivotal role in shaping the democratic response to prevent genocide," said Boylan of Clinton's comments. "Now here we are. Watching mass death of kids."
On Friday, U.S. Sen. Bernie Sanders (I-Vt.), who has consistently demanded that the Biden and Trump administrations stop funding Israel's assault on Gaza and warned of the impact mass starvation would have, issued his latest call for U.S. support to end immediately.
"American taxpayer dollars are being used to starve children, bomb civilians, and support the cruelty of [Prime Minister Benjamin] Netanyahu and his criminal ministers," said Sanders. "Enough is enough. The White House and Congress must immediately act to end this war using the full scope of American influence. No more military aid to the Netanyahu government. History will condemn those who fail to act in the face of this horror."