Report Says 'Cruel and Regressive' US Insulin Prices Violate Human Rights

Insulin prices in the United States are so high that a new report published Tuesday characterizes them as a violation of human rights, one that has had deadly consequences for diabetics without the means to afford the medicine.

In a detailed report titled "If I'm Out of Insulin, I'm Going to Die": United States' Lack of Regulation Fuels Crisis of Unaffordable Insulin, Human Rights Watch (HRW) makes the case that both the federal government and the pharmaceutical industry are badly failing to live up to their human rights responsibilities.

"We are the wealthiest country in the world, but people have to go without medication."

Unlike the healthcare systems of other major countries, Medicare in the U.S. is barred by law from negotiating drug prices directly with pharmaceutical companies, which as a result have tremendous leeway to hike costs and pad their bottom lines. Recent legislative attempts to allow direct price negotiation have collapsed due to aggressive industry lobbying and opposition from pharma-friendly lawmakers.

"People who need insulin shouldn't have to break the bank just to survive, but in the U.S. they often do," said Matt McConnell, economic justice and rights researcher at HRW. "Since the U.S. doesn't regulate drug prices or ensure adequate coverage for insulin costs, countless people who can't afford expensive insulin are not only straining their financial resources but paying with their health, lives, and livelihoods."

In an analysis of publicly available data, HRW found that the U.S. pharmaceutical giant Eli Lilly has increased the list price for Humalog--a commonly used insulin product--by an inflation-adjusted 680% since it started selling the drug in 1996. The list price of a vial of Humalog was $275 in 2018, HRW observed.

The U.S. list price of Novo Nordisk's Novolog, meanwhile, rose about 403% to roughly $289 per vial between 2000 and 2018, according to HRW.

Such exorbitant prices--which far exceed the relatively low costs of producing insulin--often force diabetics in the U.S. to ration their doses or trek across the border into Canada, where insulin prices are far lower.

HRW noted Tuesday that nearly every one of the 50 insulin-dependent people interviewed for the new report "said they had rationed analog insulin because of out-of-pocket costs, taking it in ways not recommended by their physician in order to stretch their supply."

Diabetes affects more than 37 million U.S. adults and is the country's seventh leading cause of death, according to the Centers for Disease Control and Prevention.

"We are the wealthiest country in the world, but people have to go without medication," Emily Grant, a 29-year-old with diabetes, told HRW. "There's nothing I can do about the trajectory of my illness except follow the treatment plans my doctors tell me. And I don't think it's okay to say, 'Oh well, you either afford it or you die.'"

HRW argues that the U.S. government's continued failure to constrain soaring prices "undermines equal and affordable access to insulin analogs" and "contravenes the right to health."

The group points out that the U.S. is a signatory to--but has not yet ratified--the International Covenant on Economic, Social, and Cultural Rights, which affirms "the right of everyone to the enjoyment of the highest attainable standard of physical and mental health."

The report also stresses that pharmaceutical companies "have a responsibility under the United Nations Guiding Principles on Business and Human Rights to respect human rights and ensure that their practices do not cause or contribute to human rights abuses."

"Our system of unregulated and often unmitigated high drug prices is cruel and regressive, and has allowed companies to gouge some of the most vulnerable people in the country for a product they cannot live without," McConnell said. "But we have the tools to fix this crisis."

Among HRW's policy recommendations is federal legislation guaranteeing that essential medications such as insulin are affordable to all who need them, no matter their income, insurance, or citizenship status.

The group also urged Congress to "consider legislation to provide insulin to all insulin-dependent individuals in the country free of cost."

Last month, the U.S. House of Representatives passed legislation that would cap insulin copayments at $35 a month. But critics, including some Democratic lawmakers who ultimately voted for the bill, noted that the measure would do nothing to cut actual insulin prices and that its benefits would only apply to those with private insurance or Medicare.

"This bill does not lower the price of insulin by one penny," lamented Rep. Lloyd Doggett (D-Texas).