The US government’s failure to ensure equal and affordable access to insulin violates the right to health for people with diabetes and regularly leads to tragic consequences for many of them, Human Rights Watch said in a report released today.
The 92-page report, “‘If I’m Out of Insulin, I’m Going to Die:’ United States’ Lack of Regulation Fuels Crisis of Unaffordable Insulin,” describes the human rights impacts of US government policies that make essential life-saving medication like insulin unaffordable for many people. Human Rights Watch found that exorbitant insulin prices and inadequate health insurance coverage can cause people to pay high out-of-pocket costs for insulin, contributing to dangerous and potentially lethal medicine rationing, forcing people to forgo other basic needs, and disproportionately affecting socially and economically marginalized groups.
“People who need insulin shouldn’t have to break the bank just to survive, but in the US they often do,” said Matt McConnell, economic justice and rights researcher at Human Rights Watch. “Since the US 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.”
About 27 million adults in the United States have been diagnosed with diabetes, and about 8 million adults use one or more types of insulin to regulate their blood sugar. Without it, people 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 life-saving drug – insulin analogs – can cost more than US$300 for a single vial, easily adding up to more than $1,000 a month if they do not have adequate health insurance coverage.
The drivers behind these high prices are clear. Unlike most other countries, the US does not directly regulate drug prices. There are no systems to establish a fair price for medicines before they enter the market or restrict how much manufacturers or intermediaries can increase prices. Analog insulin prices in the US are more than eight times the average across 32 other countries in the Organization for Economic Co-operation and Development.
“We are the wealthiest country in the world, but people have to go without medication,” said Emily Grant, 29, of Dallas, Texas, discussing the cost of her insulin. “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.’”
Human Rights Watch interviewed 50 people, including 31 with chronic health conditions, 18 of whom had insulin-dependent diabetes. Human Rights Watch also reviewed extensive secondary sources and publicly available price data for three of the most widely used insulin analogs: Humalog, Novolog, and Lantus. Each of these drugs is produced by one of the three multinational pharmaceutical manufacturers that collectively dominate the global market for insulin, respectively: the US-based Eli Lilly; the Danish company Novo Nordisk; and the French company Sanofi.
These manufacturers have increased the prices for these drugs by hundreds of percentage points, when adjusted for inflation, since their introduction to the market in the late 1990s and early 2000s, according to information these companies submitted to government inquiries and other publicly available data Human Rights Watch reviewed. Although these rapid price increases have slowed or ceased in recent years under scrutiny by policymakers, patients, advocates, and the media, prices are still high and adversely affect the lives of people who do not have adequate health insurance or charitable aid to help mitigate costs.
Almost every insulin-dependent person interviewed said they had rationed analog insulin because it was so expensive, taking less medicine than recommended by their doctor to stretch out their supply. Human Rights Watch also found that high out-of-pocket costs can undermine the standard of living for people who require insulin, as a larger percentage of their income goes toward this life-saving medicine instead of other basic needs, like food, rent, and housing.
The burdens from high drug costs are inherently regressive, as poorer people must pay a much higher share of their income for their medicine, all other factors being equal. Communities that have been historically marginalized, discriminated against, and underserved in the US are also disproportionately affected both by diabetes and its negative health outcomes. For example, although about 356 people with diabetes underwent a lower-limb amputation every day in the US in 2016, Black adults were more than twice as likely to experience a diabetes-related amputation as white adults.
Unaffordable insulin undermines human rights under international law, including the right to the highest attainable standard of health, the right to equal and affordable access to essential medicines, the right to equal protection under the law and non-discrimination, and the right to an adequate standard of living.
The US government should enact policies to ensure that essential medications like insulin are affordable to everyone who needs it, regardless of insurance, wealth, or citizenship status. This may require legislation to lower and regulate the prices for essential medications like insulin. Congress should also improve the affordability and availability of quality health insurance for low- and middle-income earners.
Notwithstanding government regulation, all businesses also have a responsibility to respect human rights and ensure that they do not cause or contribute to human rights abuses under the United Nations Guiding Principles on Business and Human Rights. Companies that have a role in setting drug prices, including pharmaceutical manufacturers, pharmacy benefit managers, health plan providers, and pharmacies, should take steps to identify and rectify practices that contribute to rendering insulin unaffordable for people who need it.
“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.”