Insulin Should Be a Right, Not a Privilege

Even before President Trump’s victory in the 2024 election, he had his eyes on the Inflation Reduction Act. In September 2023, Trump stated his desire to “rescind all unspent funds” for the ambitious law passed under President Biden in 2022 and best known for its climate policies. Then, on Jan. 20, 2025—Inauguration Day—Trump wasted no time issuing an executive order to pause IRA funding. (Confusingly, this action is referred to as “terminating the Green New Deal,” which was a different piece of legislation, from 2019.) 

Legal experts speculate that, in practice, it will be much harder for the Trump administration to actually pull back funding. But the IRA doesn’t just tackle climate; it represents a wide-reaching grab bag of progressive policies addressing everything from carbon emissions and health care to tax codes and the economy. (It’s worth noting that the link to the comprehensive overview of the IRA that I used for my reporting back in December has since been removed from whitehouse.gov.)

Often considered a landmark achievement of the Biden administration, the IRA includes, among other policies, an ambitious set of initiatives for clean energy jobs, funding for climate resiliency infrastructure and disaster relief, and more aggressive taxation for large corporations. But perhaps one of the most important, if under discussed, aspects of the IRA is its impact on prescription medication costs.

At a time when nearly 40 percent of Americans have opted to forgo prescription medication due to the expense, the IRA gave the government the ability to curb rising drug costs through a variety of strategies. Most notably, the law gave Medicare the power to negotiate prescription prices directly with drug companies for the first time, which could have a cumulative, long-term impact on drug prices. 

“[The IRA] has given the government for the first time the ability and also the tools through which it can negotiate drug prices” says Richard G. Frank, director of the Center on Health Policy at the Brookings Institute, a nonpartisan research organization. This ability ramps up over time, allowing a set number of additional drugs to be negotiated each year. “That really changes the ball game in an important way—not so much today or even tomorrow, but over time, you’ve equipped the government with a whole bunch of new opportunities to keep prices in check.” 

As far as immediate price reductions, the IRA also guarantees that many Medicare beneficiaries will pay no more than $35 out-of-pocket for insulin. This price cap is not only a practical win for people on Medicare, but a symbolic victory for many activists who have long lobbied to make predatory insulin and drug pricing a national concern for politicians.

In recent years, insulin has become a poster child for the broken health care system. By manipulating patent law and squashing competitors, a mere three pharmaceutical companies control an estimated 90 percent of the global insulin market—and this monopoly has given them free reign to crank up the price of insulin over the past few decades.

A recent study from the Health Care Cost Institute found that from 2012 to 2021, the price of a 30-day supply of insulin nearly doubled from $271 to $499. The estimated cost of manufacturing a vial of insulin, meanwhile, is only $2 to $4. When compared to international prices, insulin in the United States is eight times more expensive, per a 2020 report published by the Assistant Secretary for Planning and Evaluation. For many, these discrepancies are particularly outrageous; without insulin, people with diabetes can die within days.

It’s unclear exactly how Trump’s executive order will affect the IRA’s climate initiatives, let alone how or if it could have any effect on other aspects of the law, such as insulin price caps. But just a few years after Biden signed the IRA into law, it is clear that its benefits are under threat. Project 2025—a harrowing, authoritarian “wish list” published by the Heritage Foundation and meant to guide the next Republican presidency—calls for the repeal of the IRA. Republicans, too, are already pushing for a complete repeal of the IRA and its so-called “woke agenda,” including its climate provisions and tax increases for corporations. (Republicans’ continued distaste for the IRA is not surprising, however, as every single Republican in Congress voted against the bill. But that partisanship does not extend beyond the halls of Congress: The majority of Americans, regardless of political affiliation, support government-negotiated drug prices.) 

The main goal of Project 2025’s repeal is to strip Medicare of its power to negotiate with corporations, according to Andrea Ducas, vice president of health policy at the Center for American Progress, a nonpartisan policy institute. “To achieve that goal they’re willing to undo progress and throw prescription drug affordability into jeopardy for everyone in Medicare,” Ducas says. “By and large [Project 2025], this mandate for leadership, is grounded in a worldview that prioritizes profits, corporations, and business over people—full stop.”

In short, Project 2025’s IRA repeal would throw the baby out with the bathwater. In order to maintain corporate monopolies and profits, Americans would lose out on insulin price caps, health care savings, climate initiatives, clean energy jobs, and a whole lot more.

Yet even with the IRA currently in place—and a general consensus from voters that health care and insulin prices are simply overwhelming for most Americans—people with diabetes still struggle to afford their insulin on a day-to-day basis. In 2021 alone, more than one million Americans were forced to ration their life-saving insulin, with Black Americans, the uninsured, and those too young to qualify for Medicare being the most vulnerable to rationing. 

Clearly, the IRA represents only one step on a much longer journey toward equitable health care access. But health advocates, grassroots organizers, and people living with diabetes continue to lead the way in advocating for a future where accessible insulin is a reality for all.

Insulin Policies for All

While the IRA is an achievement, it’s important to understand its limits. The IRA grants a co-pay price cap for certain Medicare beneficiaries—not a holistic price cap. This difference is an important one, according to Shaina Kasper, executive director of T1 International, a grassroots nonprofit run for and by people with diabetes. 

The $35 co-pay limits monthly out-of-pocket expenses for certain people with Medicare, but it does nothing to regulate the actual list price of insulin, the initial price of a drug set by pharmaceutical manufacturers before any rebates, discounts, negotiations, or insurance kicks in. As a result, Kasper says people without Medicare, premium insurance plans, or any health care coverage are still left in the lurch. (It should be noted that the IRA initially did include a $35 co-pay cap for those with private insurance, not just Medicare recipients, but it was shot down by Republican lawmakers.)

“Our goal is an absolute price cap [and] lowering that list price of insulin to make sure that it’s affordable and accessible to all,” says Kasper. Together, Kasper says, lowered list prices and co-pay caps would impact the full spectrum of people in need, including those with private insurance, those without insurance, and those with Medicare benefits. (Even without a full price cap, however, the IRA did play an important role in pressuring all three insulin giants to announce their own price caps or reduced list prices for some insulin products—an important, if incomplete, step toward affordability.)

But affordability and accessibility aren’t always the same thing when it comes to medications. The fact that insulin and diabetes supplies need to be prescribed also means added barriers. Tracy Ramey, leader of the Ohio Insulin for All chapter and T1 International organizer, has recently helped pass an updated version of Kevin’s Law in her state, which grants pharmacists the ability to dispense an emergency supply of a chronic maintenance drug without a prescription. The law was named after 36-year-old Kevin Houdeshell, who died during the holidays in 2014 after being turned away from a pharmacy and unable to contact his doctor for an insulin refill.

The impact of Kevin’s Law is immediate—even for Ramey’s own daughter, who has Type 1 diabetes. While Ramey was between jobs and waiting for Medicaid to kick in, her daughter was still able to get her supplies, even after a prescription had run out. “I’m very proud that my daughter was able to benefit from that as well,” Ramey adds. 

Since 2016, 26 states have passed some version of Kevin’s Law, but Kasper says expanding the law is an important way to ensure equitable access to health care across the country. Taken together, these policies—universal price caps, lower list prices, and an expanded scope of practice for pharmacists—would add much-needed guardrails for people struggling to afford and access their medications.

Insulin Access on the Ground

However well crafted or impactful a potential policy may be, people urgently need insulin access here and now. To fill in the gaps, communities across the country are creating their own mutual aid networks.

“We can’t sit and wait forever for someone else to save us. It’s just not going to happen,” says Brandon Lopez, founder of the Embrace Foundation, a nonprofit, volunteer-run organization in Arizona that sends free diabetic supplies to people who need it. “Who knows, maybe a policy will pass or something will change where health care will be free, but until then it’s our job as a community to take care of each other.” 

The Embrace Foundation has its roots in Lopez’s own health care experiences. In 2017, Lopez was working full time, living without health insurance, and struggling to afford his insulin. 

“With bills, rent, cost of living, I had no money for diabetic supplies, [which] added up to almost $1,000 a month. I simply couldn’t afford it,” says Lopez, who has Type 1 diabetes. “For months I didn’t test my blood sugar once. I couldn’t afford the strips. I took insulin when I felt high and ate something when I felt low, completely in the dark. I spread out what insulin I had, skipped meals, took half doses, and reused the same bag of dull pen needles I had over and over, completely unsanitary and unsafe.”

To get by, Lopez described how he sold whatever possessions he could and spent days going from hospital to hospital, “practically begging for insulin.” Eventually, Lopez landed a better job that provided health insurance. But he continued building an ad-hoc insulin-supply-sharing network on social media, where he connected people experiencing insulin insecurity to a growing inventory of donated supplies.

In 2018, Lopez formally launched the Embrace Foundation, and nearly seven years later, says it has expanded to 19 volunteers, three storage units of supplies, and more than 2,500 people served across the country. According to Lopez, the majority of supply requests come from people who don’t qualify for insurance, college students who may have aged out of their parents’ insurance, and people who are out of work. But plenty of people with insurance still can’t afford their supplies.

“It’s either have insurance [with] a co-pay or pay [more than] $600 to live,” says Lopez. “This month we had a woman reach out that was a single mother with three children and was rationing her supplies so she could keep the power on and feed her family. We’ve set her up to where she will receive a package from us every month so that she can [have] one less thing to worry about.”

Lopez says the Embrace Foundation is meant to continue the legacy of Frederick Banting, the Canadian researcher and doctor who discovered insulin in the early 1920s. “Banting sold the patent for insulin for $1 … saying, ‘Insulin does not belong to me, it belongs to the world,” Lopez says. “We will always stay true to that.”