A decade ago, insulin became the poster child for America’s out-of-control drug prices. The 2017 death of Alec Smith, who was rationing his insulin before he died, and repeated price hikes for a 100-year-old medication (the patent for which was originally sold for $1 to a university to prevent it from being exploited commercially) sparked widespread outrage that a lifesaving medication could be unaffordable to the people who depend on it to survive.

And then politicians actually acted. Starting with a Colorado law passed in 2019, states began passing laws capping the out-of-pocket costs for many people who take insulin; 27 states (plus Washington, DC) now have such a policy. Then in 2022, Congress included a provision in the Inflation Reduction Act that established a $35 per month cap on insulin prescriptions for people on Medicare. Given the national response — drugmakers also made splashy public announcements about reducing the cash price that uninsured people pay — you would be forgiven if you thought this was the one health care cost crisis that the US had genuinely managed to solve.

But the diabetes community has a dire warning: It’s not over. Millions of people continue to struggle to pay for their insulin and having their long-term health put at risk because of, in the words of one advocate who put it bluntly, pharmaceutical greed.

“There has been so much attention and promise to action around the insulin price crisis. … There has been so much action,” said Shaina Kasper, executive director of T1 International, a global nonprofit that advocates for people with diabetes. “And shockingly, frustratingly, critically, the data from our 2024 survey showed that the rationing rates were worse than ever. Ultimately we’re facing such immense and monstrous corporate greed. … When we put a Band-Aid on one hole, another one’s going to find a way to pop out and keep profits high.”

Fixing the insulin crisis will require a multifaceted approach: drug pricing reform, insurance mandates, and possibly even public manufacturing. Out-of-pocket caps, Kasper said, were always a temporary fix for a very broken system. There is still a lot more work to do.

Why so many Americans still struggle to afford insulin

Both national and local surveys indicate that the policy changes of the past decade have not had the desired effect.

A study published last year from researchers at the Yale Diabetes Center found that people treated there were rationing insulin at the same rate in 2024 as they were in 2017; about one in four people reported some rationing due to the cost of the drug in both years. When you added in the people who rationed because of insurance delays or supply limits, more than one in three people — 38 percent — were still having trouble keeping this lifesaving medication on hand in 2024. A 2024 T1 International survey likewise found that nationwide, 34 percent of the Americans who use insulin reported rationing the medicine. (About 8.4 million people in the US rely on insulin to survive.)

Dr. Kasia Lipska, an endocrinologist and researcher who treats patients at the Yale Diabetes Center and who co-authored that study, was surprised by their findings.

“I was surprised because I’ve been looking at the policy and advocating for policy change; you think things are moving, they should be really improving,” Lipska said. “But if I talked to the nurses and our staff at the Yale Diabetes Center, they told me, ‘Of course they haven’t changed. We’re still hearing these stories.’”

How could this be? The explanation is multifaceted, according to Lipska and Kasper. 

“There’s just still a lot of holes in one who is covered by various protections and then how they’re covered and how they access this,” Lipska said. “It’s not as simple as just showing up at the pharmacy and asking for your insulin, and the sticker price is there, and that’s what you pay. It’s extremely complicated.”

For starters, millions of Americans remain uninsured and have to pay the cash price for drugs. While drugmakers make flashy announcements about helping those people, the process of enrolling for savings cards to get those lower prices can be a nightmare; one congressional investigation found in 2023 that uninsured patients were still paying an average of nearly $100 for insulin despite Eli Lilly’s pledge that its generic product would be available for $25 per vial. Even if you manage to get your discount card, the same investigation found that Lilly introduced several restrictions based on geography and needs, and that the specific insulins that are subject to these voluntary price caps are often out of stock at the pharmacy when people go to fill a prescription (while the more expensive brand name version is consistently available).

And then there are the loopholes in those existing federal and state laws. The federal $35 cap applies only to Medicare; the private insurance that covers half the country is excluded. (There have been bills proposed to extend the cap to private coverage, but they have not gone very far in Congress.) The state laws that do exist typically apply only to small-group and individual plans that are subject to state regulations; larger self-funded plans are exempt from state mandates and currently have no enforced limit on out-of-pocket insulin costs. One national estimate found that around 775,000 people who use insulin and had private insurance were protected in 2025 by the caps in states where they’d become law. But more than 1 million people in those states were not, nor were the 2.1 million commercially insured insulin users in states without a cap.

Even for people who benefit from the mandatory out-of-pocket caps instituted by Medicare and state laws, some of them still struggle to come up with $35 a month, given all of the other price hikes Americans have faced since the pandemic. They may have to navigate a complex process in order to actually receive the promised discount. And while a $35-per-month cap sounds straightforward, in practice, people can still face higher costs. Each individual person requires a unique amount of insulin and, for some of them, they might need two different kinds; the pharmacy may not have the right version and will make substitutions that lead to higher costs. That’s how one of Lipska’s patients ended up paying $140 per month for his insulin — despite being on Medicare.

“These things really add up…and frustrate people,” she said, “because what seems like a great idea is not actually how things work on the ground.”

The consequence is that, despite all the legislative activity and self-congratulations, millions of Americans are still at risk of serious health problems because they can’t get insulin.

The worst-case scenario is what happened to Alec Smith: Somebody is forced to spread their insulin so thin that they put their life is in danger. When diabetics have their blood sugar spike without insulin on hand, they can go into diabetic ketoacidosis, “which literally means your blood is turning into acid,” Kasper said. “I can speak from experience: it feels like you’re dying.”

To recover from an episode, they may have to go to the emergency room and end up taking even more insulin while eating in order to get their body back to equilibrium. But even short of an emergency, Kasper said, people who resort to rationing insulin can experience significant side effects. Prolonged high blood sugar due to rationing could lead to serious vision and nerve problems that were supposed to be a thing of the past once insulin became available.

Those were the scenarios that lawmakers wanted to prevent as they tried to make insulin more affordable. But they remain a very real threat for too many people.

The big idea that could make insulin truly affordable

If there’s good news to be found, it’s that the advocacy community is not giving up. They are sounding the alarm about the ongoing affordability crisis and urging Congress to act. But they do worry that the issue has become less urgent: The truly comprehensive mandate for insulin out-of-pocket caps, which is typically introduced every Congress, was delayed this time. “This year, neither bill was introduced for over a year, and it was very concerning,” Kasper said.

But they are also placing bets on something much more profound than a price cap: the government itself procuring or even producing insulin and making it available to people at the lowest possible cost. 

“This idea that medicines should be for people and not for profit I feel like is really catching,” Kasper said. 

Some states are taking baby steps in that direction: Oklahoma passed a bill this year that would offer government funding for private companies that pledge to produce insulin and sell it at a low price. 

Others are going bigger. As I reported in 2023, California has launched a program that is eventually intended to lead to government-owned facilities producing insulin to be sold on the cheap, though it will take years until publicly owned production begins. The New York state Senate approved a similar plan this year, although funding for it didn’t make it into the state’s budget. Kasper said that she is optimistic the project will make it into next year’s spending plan, and says a lot of work is currently being done to ensure it happens.

In the future, public manufacturing could also help to address the supply problems that continue to pop up. There are only three insulin manufacturers in the US right now. As those for-profit pharmaceutical companies place more emphasis on GLP-1 production — which often takes place in the same facilities as insulin production — nonprofit initiatives could fill in the gaps.

“In this time of tariffs even, with these concerns around shortages and rising prices and the corporations having this monopoly and price gouging ordinary Americans for decades now, as we’ve seen on insulin, let’s just make it ourselves,” Kasper said.

This is a long-term vision; if you need help right now, T1 International has resources to help people get health insurance, access discount programs, and even find emergency insulin. But a more affordable future for insulin will only be possible if lawmakers feel compelled to act. Public outrage created one round of reform, but the risk of political complacency is real. So if you care about this issue and want to get involved, T1 International also has a tool kit for people who want to advocate for policy changes, including around public pharma.

“The general communication that we’ve been hearing is that the insulin price crisis is over,” Kasper said. “Everyone should have access to a $35 copay for insurance. As the data shows, as we’ve been talking about, that is just not true.”

On stage at Davos in the Swiss Alps earlier this year, Bill Gates, before an audience of the global do-gooding elite, announced a $50 million partnership between his foundation and an unlikely new ally, OpenAI, aimed at improving healthcare in Rwanda.

Just a month earlier, the Gates Foundation had released a harrowing report about widespread global health cuts and collapsing foreign aid infrastructure, documenting a rise in child deaths for the first time this century. But at Davos, even as the US hemorrhaged funding for vaccines, maternal healthcare, and HIV treatment, the Microsoft co-founder struck an optimistic tone. 

“Using innovation, using AI,” Gates told Reuters, “I think we can get back on track.”

As it turns out, the partnership was just an opening salvo for what’s become a wholesale embrace of AI by the world’s largest global health philanthropy. A $200 million partnership with Anthropic came just a few months later. And then, on Tuesday, the Gates Foundation announced a plan to dole out a jaw-dropping $1 billion over the next two years for scaling up AI interventions across healthcare, education, and agriculture around the world. 

The sense that AI will soon change everything, and mostly for the worse, has perhaps never felt so pressing and alarming as it does right now. But this hefty new commitment is premised on the idea that AI could eventually make our lives much better too. In a country like America, AI requires massive investments and buildout — in the grid, in power, in technology, in water. In many parts of Africa, already infrastructure-poor, the foundation is effectively betting that AI can compensate for some of the infrastructure that isn’t in place or that has been lost — and offer a new layer that can help in education, in delivering healthcare, and more. 

The Gates Foundation’s new commitments include projects to improve how farmers analyze their crops, how doctors diagnose patients, and how students learn. Some have already proven to be quite effective, according to the foundation, with one tool improving the accuracy of medical diagnoses by 16 percent across several Kenyan clinics. “In poorer countries with enormous health worker shortages and lack of health systems infrastructure,” Gates wrote on his blog earlier this year, “AI can be a game-changer in expanding access to quality care.” 

Last year’s foreign aid cuts were unfathomably destructive for some of the world’s poorest countries, shuttering thousands of clinics and perhaps hundreds of thousands of classrooms in places where critical workers and supplies were already stretched thin. No, AI cannot deliver a baby, administer a vaccine, or manage a classroom — not yet, at least — but it can, the Gates Foundation hopes, help ease the burden and augment the quality of care for nurses and teachers now tasked with serving far more people than any one person should. 

“This is the most transformative technology of our lifetime,” Mark Suzman, CEO of the Gates Foundation, told me, and while there are “very real risks and challenges” surrounding AI, it also presents genuine opportunities to tangibly improve many people’s lives.  

It is a tantalizing premise: We can’t afford to build clinics, hire teachers, or lay new power lines, but perhaps AI could create the digital infrastructure needed to help billions of people do more with what they have — or rather, with what’s left. The question is, can the right layer of innovation help bolster a buckling system, even as the physical and logistical infrastructure surrounding it crumbles?

Is AI really what global health needs right now? 

Most Americans have yet to see AI improve their lives in meaningful ways, much less those living in poverty or in countries where only a sliver of the population has ever used ChatGPT. 

But those numbers in the developing world are slowly changing, a shift enabled in part by other global health funders convinced that as foreign aid dries up, AI could soon help the world do more with less. The Trump administration itself is on board with this thinking, so long as it benefits American tech companies. Last year, the State Department announced a $150 million partnership with the drone company Zipline to transport medical supplies in several countries.

To Zipline’s credit, an NPR reporter in Rwanda last month found that the company’s drones were already saving lives in places with poor road infrastructure, where driving to the nearest hospital can take hours on winding hills, but where drones can deliver crucial blood transfusions within minutes. 

And yet, for Rwandans to benefit fully from these high-tech deliveries, they need staffed clinics to visit. As a result of foreign aid cuts, some of those literal landing spots are now on the verge of closing in some of the nation’s most vulnerable rural corridors. “Without the underlying infrastructure, like roads, energy and power and unless there is accessibility, rural and otherwise,” Enoh Ebong, president of the global development department at the Center for Strategic and International Studies, told NPR, “then all of these solutions will stop short.”

But just as medical delivery drones still need a clinic to fly to, most of these interventions require some layer of physical infrastructure — roads, schools, power, and quite obviously, broadband  — to function. Satellite imagery shows that some rural communities in sub-Saharan Africa quite literally went dark in the aftermath of USAID cuts. It will be much harder for their kids to prompt an AI math tutor, or for a local farmer to download a weather app. 

“We’re seeing this very much as a both/and,” Suzman told me, calling more traditional funding for education and healthcare “the bedrock for long-term economic growth,” which AI is meant to supplement, not replace. But, in practice, foreign aid cuts have left serious cracks across much of that bedrock, which could make it harder for state-of-the-art solutions to function as intended.  

It is obviously not incumbent on the Gates Foundation to pay for all of this alone – nor would it even be feasible for them to do so. And for the record, plenty of the foundation’s other grant programs are not AI-related at all. But this tension does speak to a broader question that may be felt most acutely in a context like global health, but ultimately one that touches us all: Do we spend our scarce resources on the digital infrastructure of the future at the peril of our needs right now? Could you justify buying the new $1,999 folding iPhone if you can barely afford to buy groceries? 

The answer is not actually always an easy one. It is not for us to say, for example, that just because a community lacks reliable running water, its people should be excluded from the benefits (and encumbrances) of the smartphone, especially if that smartphone can connect them to health advice they could never access otherwise, or guidance that could help them survive a drought. 

In some parts of the world, digital forms of banking arrived long before local brick-and-mortar branches did, instantaneously connecting countless people to a cheap and secure way to save and send their cash to family and friends in need. It is certainly possible that AI, or at least the kind of applications the Gates Foundation funds, could one day have a similarly transformative effect on how people access personalized levels of care, education, and other services in places without the resources to do so otherwise. 

That is the hope, but it is also hard right now to believe uncritically in a technology that, as Gates himself blogged just last month, “will either be the greatest equalizer ever invented, or the worst source of injustice,” ushering in “one of the most turbulent times in human history.” 

In an interview with the New York Times soon after, he seemed convinced that AI will likely do more harm than good. “I don’t like bringing bad news to people, and I don’t like saying that innovation may be a net negative,” he said. “But that’s where we are.”

Now he wants billions of people around the world to use it? Yes, Suzman said, because if not, then inevitably the best parts of AI — the potential for exponentially better cancer treatments, for example — will go only “to those who can pay for it,” while the worst parts of it will fall, as they so often do, on those who benefit the least. “These decisions are being made now,” he said, “and the decisions being made now will then probably shape the following two decades.” Here’s hoping they’re good ones.