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‘I skip meals to make my insulin last longer’: The problem with Big Pharma’s donation schemes

  • The price of insulin in the United States will drop dramatically but people in low-income countries, who spend close to 100% of their income on the life-saving medication, won’t benefit.
  • Governments in these countries often rely on donations from drug companies, but it’s an unsustainable solution, public health experts say.
  • Donation schemes don’t give governments the option to negotiate for lower prices so that they can buy the drug affordably.

“I ration my insulin every month,” says Khushi Ahuja, a law student from Delhi who has type 1 diabetes and relies on human insulin manufactured by the US company Eli Lilly to manage her condition. While insulin is available at no cost in some public hospitals in India, it is mostly up to individuals to buy the drug.

“Every month I hear about insulin prices rising and I feel guilty about burdening my parents,” Ahuja says. “I skip meals to make my insulin last longer.”

Eli Lilly and two European companies, Novo Nordisk and Sanofi, control 99% of the market by value and 96% of the market by volume. The three manufacturers produce 83% of the insulin sold in low- and middle-income countries, where it is now estimated that one in two people who rely on insulin do not have sufficient access to the drug.

Earlier this month, all three companies made a commitment to cutting the costs of insulin in the US, where the drug was sold at the highest price in the world.

Ahuja, like millions of people using western-produced insulin in low- and middle-income countries, will not benefit from the price cuts. But she hopes that the announcement will set a precedent and mark a change in how global insulin suppliers view the life-saving drug they sell for profit.

Elizabeth Pfiester, director of T1International, a non-profit organisation advocating for people with type 1 diabetes, says: “Even though people in the United States are paying the highest dollar-for-dollar amount, many people around the world, particularly in the Global South, have to pay up to 100% of their income to access insulin.”

According to T1’s data, the average out-of-pocket costs of insulin and diabetes supplies in the US cost 10% of GDP per capita, but in Kenya this rises to 125% of GDP per capita.

Although Ahuja comes from a comfortable middle-class background, she worries that diabetes will make her financially dependent on her family well into adulthood. “The monthly starting salary I can expect once I graduate will be the same as the monthly cost of my insulin,” she says.

Big Pharma is doing more to cut prices, but is it enough?

Claudia Martínez, research programme manager for diabetes at the Netherlands-based Access to Medicine Foundation, says: “In recent years, companies have been doing more to increase insulin accessibility in lower-income countries.”

Novo Nordisk has been praised for initiatives such as “Defeat Diabetes”, which includes reducing the price of human insulin, as well as a pilot programme of introducing a business-integrated model to improve access to diabetes treatment in 49 African countries.

Meanwhile, Eli Lilly’s 30×30 programme aims to increase healthcare access for 30-million people in “resource-limited settings” annually by 2030. Diabetes is a large focus of the project, says Michael Mason, executive vice-president of Eli Lilly.

The company also works with Unicef and Life for a Child, donating vials of insulin and resources to projects in low- and middle-income countries including Kenya and Malawi. Most of the projects focus on children, but there are plans to extend the scheme to the under-30s.

The company will also offer pro bono technology transfer and active pharmaceutical ingredients at a reduced cost to an Egypt-based insulin manufacturer. 

Mason says the African-produced insulin will be distributed in 18 months’ time and is projected to benefit one million people a year.

Accessibility of insulin around the globe is a “real big focus” for Eli Lilly, says Mason. “We want to make sure we’re good corporate citizens — make sure we improve the lives of people who live with diabetes,” he says.

However, the voluntary schemes and donations that manufacturers support cannot be enforced or demanded by governments.

Martínez says: “Donation programmes are not really sustainable in the long term, even if some of them have been around for decades.” Manufacturers should instead work with governments to find ways in which patients can move from donations to tiered-pricing options that make the drug more accessible, she says.

Should medicine companies have the same rules as everyone else? 

Mohammed Seyam, a young doctor living with diabetes in Gaza, who is T1’s representative for the Middle East and North Africa, says: “The ministry of health here in Palestine mainly relies on donations but not directly from manufacturers.”

Referring to the faster-acting variant of insulin he uses, Seyam adds: “So while analogue insulin is theoretically available for free for every person living with diabetes in Palestine, in reality it depends on donations.”

The doctor says he spent 40% of his salary since November 2022 buying analogue insulin produced by Novo Nordisk privately because there is a shortage of the medicine in Gaza. While he could still access free human insulin, which is an older formulation of the drug, he says making the switch would be harder for his body.

Unlike human insulin, analogue insulin — which was added to the World Health Organisation (WHO) essential medicines list in 2021 — works as soon as it is injected and has no peak activity times, which many people with diabetes find preferable. Analogue insulin has also been associated with a lower risk of hypoglycaemia. 

Although insulin is necessary for people with type 1 diabetes to survive, the global insulin monopoly is not covered by any international regulation. David Beran, a researcher at Geneva University, says that while wealthy countries, such as the US, can cap prices on the medication, governments in low- and middle-income countries are left with “very little power to negotiate”.

When the Argentinian government introduced price caps on insulin due to a financial crisis in 1985, Eli Lilly withdrew from the country entirely, leaving Argentinians stranded without access to insulin.

In the 2010 eurozone crisis, Novo Nordisk did the same in Greece after the government ordered a 25% cut in the insulin price. After a public backlash, the company resumed supplies to the country after negotiating a price increase.

“The question is: do we see companies that sell medicine as different than companies that sell computers or soft drinks?” Beran says. “Insulin is a life-or-death matter but these are private companies beholden, in a sense, only to their shareholders.”

This article was originally published by The Guardian’s global development project part of Guardian News & Media Ltd.

Weronika Strzyżyńska is a journalist and a 2020/21 recipient of the Scott Trust bursary. She has written for The Guardian, New Statesman and Prospect.