A member of an underground group that brings drugs across the Canadian border explained his methods to me. “We break it up,” he said, describing how their haul is carefully divided into different mailing boxes lined with foam insulation and ice packs. “So, if Customs catches something, we don’t lose it all.”
I was interviewing a drug runner for Human Rights Watch research, but he wasn’t looking to turn a profit. He was just one of many people working ordinary jobs and living ordinary lives—students, homemakers, restaurant and public utility workers, among them—who told me about their experiences in the shadowy world of insulin supply sharing.
Across the United States, informal aid networks of diabetics work, often in legal gray areas, to ensure access to insulin for those who cannot afford it, importing, mailing, donating, delivering, and sharing as many vials and injection pens as they can. This spontaneous solidarity movement, motivated by tragedy and organized online, is often a last line of defense for those facing the possibly lethal consequences of running out of this lifesaving, but unaffordable, medicine.
“I don’t care if they want to throw us in jail,” the insulin smuggler told me. “We want to save lives.”
Congress has proposed legislation that would help address this crisis by limiting annual increases in drugs’ list prices to the rate of inflation, capping patients’ out-of-pocket costs, and allowing Medicare to negotiate drug prices, including for insulin. These reforms are popular and a core component of President Joe Biden’s plan to address inflation. But the window to enact them is rapidly closing.
This urgency is not lost on Senate Democrats, who are moving forward with plans to enact these comprehensive drug price reforms through the budget reconciliation process, which only requires 50 votes in the Senate. But in a sudden—and unexplained—policy shift, when the draft version of this reform package was submitted to the Senate parliamentarian on July 6, it removed previously uncontroversial provisions that included all insulin products in Medicare negotiation and capped health insurance copays for insulin at $35.
It is possible that a separate bipartisan bill that would implement a similar cap on out-of-pocket insulin costs for people with health insurance may have played a part in this decision. Senate majority leader Chuck Schumer has promised to bring this bill to a vote, but it has a much harder and unlikely path to being passed into law, as it would require 60 votes to overcome the filibuster. This insulin affordability crisis forces people to choose between a medicine that many cannot live without and other basic needs like food and rent. It doesn’t just harm peoples’ health; it limits access to higher education, home ownership, and other life goals, while causing immense stress and anxiety. Congress can take a significant step towards ending it now. But unless Schumer changes course, Democrats may miss this opportunity. (Schumer’s office did not respond to inquiries in time for publication.)
The insulin smuggler I spoke with was one of many people with insulin-dependent diabetes we interviewed for a recent report on the human rights impacts of unaffordable insulin in the United States. Our investigation revealed a deadly but largely unseen crisis of insulin rationing, driven by federal policies and corporate practices that make lifesaving medication like insulin prohibitively expensive for many people.
About 8 million adults in the US use one or more types of insulin to regulate their blood sugar. Without it, they may experience high blood sugar, or hyperglycemia, which can lead to serious and even life-threatening complications. But in the US, the most commonly prescribed form of this lifesaving drug—analog insulin—can cost more than $300 for a single vial, easily adding up to more than $1,000 a month.
Uninsured and underinsured people, who are much more likely to be from marginalized communities and working low-income jobs, may have no choice but to bear the full burden of this medicine’s exceptional cost. People who require lifesaving medicines like insulin will pay what they must to survive, regardless of the price. Or, as some of the accounts people shared with me showed, they will pay for as much as they can afford and then just hope not to die.
Almost every insulin-dependent person we interviewed said they had rationed analog insulin because of its cost, risking long-term and potentially lethal health complications by taking less medicine than needed to stretch out their supply. Although it is difficult to estimate how many people in the US ration insulin in this way, several recent studies found that about one-in-four insulin users reported doing so.
The consequences of rationing can be deadly. A 2020 study of national hospitalization records from 2017 found that on average more than two people died each day in the US after being admitted into a hospital with a primary diagnosis of diabetic ketoacidosis, also called DKA. But this figure may underestimate the total number of these tragic DKA deaths in the US, since this inpatient hospitalization data does not capture deaths that occurred at home or in an emergency room.
Memorials written by family members who found their loved one dead after they rationed insulin because of cost capture the painful human toll of many deaths that potentially went uncounted in these records.
The drivers of this crisis are clear. Unlike most countries, the United States has no direct government regulation of drug prices to make sure they are affordable. There are no systems to establish a fair price for medicines before they enter the market or to restrict how much manufacturers or intermediaries can increase prices once they do. In this unregulated market, analog insulin prices in the US are more than eight times the average among the 32 other countries in the Organization for Economic Cooperation and Development.
Despite the immense wealth and pharmaceutical production capacity of the US, many diabetics must rely on the illicit but lifesaving work of ordinary people to ensure that they have access to the medicine they need to survive. This crisis is the result of government policies. But thankfully that means that it can be undone by changing them.
While these comprehensive drug price reforms still fall far short of the US government’s human rights obligations, they would be life-changing for millions of older adults and would represent the most significant US health care legislation since the Affordable Care Act. Not including insulin products, essential to the human rights of diabetics, would be a harmful and pointless mistake that only benefits corporations that have profited from a status quo where the lives and livelihoods of millions of diabetics are endangered by an unaffordable drug they cannot live without. Schumer should reinsert insulin into the reconciliation bill without delay.