Addressing the Insulin Crisis

Thanks to a decade-long fight to protest price gouging and raise awareness, insulin has become a centerpiece in the fight for universal health care. “The fact that all those people were in the room, that there’s a united bipartisan effort to question the big three insulin manufacturers — those things are really encouraging,” said Max Goldberg, a diabetic who traveled from New York City to attend the proceedings.

HELP chair Bernie Sanders announced the hearing on April 21, after a string of policy victories in the fight for affordable insulin. Over the past three years, twenty-two states as well as Washington, DC have passed laws capping the co-pays that insurers can charge patients for insulin prescriptions. California recently contracted with a biotech firm to produce generic insulins for the state to sell at cost. With the enactment of the Inflation Reduction Act this year, seniors on Medicare have their insulin co-pays capped to $35 a month per prescription, drugmakers will be penalized for overcharging prescriptions filled through Medicaid, and diabetics on certain high-deductible plans now pay less for insulin before their deductibles are met. Most notably, the hearing took place a month after all three major insulin producers announced expansions to their coupon programs and price reductions on some of their insulins.

Yet far too many diabetics still lack access to affordable insulin. State and federal laws regulating insulin costs have provided protection only for the insured, leaving behind hundreds of thousands of uninsured diabetics. Manufacturer discount coupons are notoriously unreliable and often require smartphone or printer access. Millions of patients rely on newer insulins that will still cost hundreds of dollars per month. As of May 2023, only one brand of insulin — Eli Lilly’s Lispro — has actually seen its price reduced. And according to ongoing research by the nonprofit T1International, no respondent to its survey was able to access the low-price insulin before the hearing took place.

Forcing pharma and insurance executives to testify before the Senate is part of a wider legislative push to expand access to insulin. The Senate is currently debating a few different proposals about the cost of the drug. One of the major bills, introduced by Senators Raphael Warnock, a Georgia Democrat, and John Kennedy, a Louisiana Republican, caps co-pays for diabetics with private insurance at $35 and sets up a funding mechanism to help the uninsured pay the same rate. The second bill, introduced by Senators Jeanne Shaheen, a New Hampshire Democrat, and Susan Collins, a Maine Republican, has the same co-pay cap for insured diabetics and adds new regulations on the backend to blunt PBM profiteering and increase access to generics, but does not directly address patients without insurance. Both proposals have their limitations, but the passage of either would help millions afford their insulin.

The HELP hearing was called in part to assist the committee members’ choice of which bill to back. Senator Sanders called the hearing to order and laid out the issue in simple terms:

1.3 million Americans in the richest country on earth cannot afford insulin. . . . This committee is not only going to be dealing with the crisis in insulin; we’re going to do everything we can to end the outrage that the American people, by far, pay the highest prices in the world for virtually every brand-name prescription drug on the market.

As straightforward as the issue is, the hearing quickly devolved into a mess of technicalities and blame-shifting. Pharma CEOs blamed the PBMs, which choose which prescriptions are covered and negotiate the secret discounts that insurers pay for them. The PBMs in turn pointed out that they don’t set the high prices themselves and take no responsibility for driving industry costs up, because their only goal is serving their specific clients. The few substantive questions that cut through the morass were either evaded or focused on minute details, such as the requirement that PBMs charge only a flat fee for their services instead of receiving a percentage of the savings. Finding specific policy changes to lower drug prices is both possible and beneficial, but the system’s complexity obscures the core issue harming patients.

“The reasons why [insulin] is so expensive are both really complicated and also extremely simple,” said Shaina Kasper, US policy manager at T1International and a type 1 diabetic herself. “It’s just pharmaceutical greed.”

Of the twenty-one senators at the committee hearing, only two spoke to the true nature of health care in the United States: Bernie Sanders and Rand Paul. While most of their colleagues on both sides of the aisle gestured vaguely toward “misaligned incentives” as the culprit for high prices, only Paul and Sanders openly acknowledged that in the United States, the lodestar of the health care industry is profit, not health. For Sanders, this truth is the root cause of medical injustice.

“Major drug companies made $100 billion last year . . . and more money went into stock buybacks than research and development,” he said in his closing remarks. “The system is broken.”

Senator Paul also emphasized the importance of profit in driving pharmaceutical companies’ decisions — but unlike Sanders, he celebrated it. Paul’s only complaint with the for-profit health care system is that there are any policies at all that attempt to protect patients. The hearing itself was a farce for Paul, as any decision made by the executives was beyond moral reproach: “Their obligation is to their stockholders. They are legally bound to make a profit.” Paul’s callousness shocked even the seasoned activists in the audience, but his statements pointed to an important truth — serving patient needs is fundamentally incompatible with maximizing profits.

The Fight Continues

Decades of industry price gouging have resulted in needless suffering, countless health complications, and many early deaths. Activists have gained widespread support by showcasing this failure of the health care system.

In 2019, activists protested the lack of price regulation in the United States by chartering a busload of diabetics to Canada and back to smuggle in affordable insulin, publicly breaking federal law in the process. When nonprofits like JDRF and the American Diabetes Association began taking money from the very pharma companies killing diabetics, patients founded their own advocacy groups to counteract corporate corruption. In 2018, activists staged a protest at drugmaker Sanofi’s headquarters, and two mothers who lost a child to insulin rationing were forced off the property by police when they attempted to scatter their children’s ashes. Diabetics have also set up mutual-aid networks both above and underground to share their insulin prescriptions, even when doing so means breaking the law.

“The entire movement can be a model for how we get broader, systemic health care and joint pricing reform in America,” said Goldberg, reflecting on his years of advocacy. “Almost everybody can agree that people shouldn’t die because a pharmaceutical company is price gouging medicine that they need to stay alive.”

Insulin may be a particularly egregious example of profiteering, but it is not unique: our health care system unjustly deprives people of access to lifesaving medicines and treatments of all kinds. The movement for affordable insulin can be the spearhead in the fight for universal care — because once the public understands the injustice of insulin in the United States, they understand the foundational injustice of for-profit care itself.

After more than three hours, the gavel fell, and the hearing adjourned inconclusively. The industry executives exited first, flanked on both sides by Capitol Police. Outside, the activists gathered again to debrief and reflect on the work ahead, both for full insulin access and health justice for all.

One of the few nondiabetics who had attended was Shannon Vance, whose twenty-one-year-old son Gavin died from a lack of insulin. She wore a shirt with his smiling face on the front, visible just behind two CEOs on a few of the hearing’s livestreams. “No parent should have to suffer the loss of their child for something that is 100 percent avoidable,” said Vance. She wiped her face. “I didn’t think I was going to cry, but the man next to me gave himself an injection, and it just hit me: I hadn’t smelled insulin since Gavin died.”