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Insulin rationing higher among US diabetics than worldwide rate, survey finds

The skyrocketing price of insulin has some diabetics scrambling to cover the cost of the life-saving medication. Nearly 26 percent of people with diabetes in the US have rationed their insulin at least once a year, a new study found.
The skyrocketing price of insulin has some diabetics scrambling to cover the cost of the life-saving medication. Nearly 26 percent of people with diabetes in the US have rationed their insulin at least once a year, a new study found.(John Locher/Associated Press, File)

In the latest indication of how some people are struggling to afford their medicines, a new survey finds that 18 percent of people who have diabetes around the world rationed their insulin at least once last year, but this occurred among nearly 26 percent of people with diabetes in the US.

And although 70 percent reported having some coverage for their costs, two-thirds noted they have no financial support for the remaining out-of-pocket costs. In the US, 89 percent of people with diabetes had health care coverage, but 79 percent had no other form of assistance. Just 5.5 percent received government assistance, according to the survey by T1 International, a patient advocacy group that focuses on Type 1 diabetes.

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By contrast, rationing was reported among just 6.5 percent of people with diabetes in other high-income countries and almost 11 percent of those living in low or middle-income countries.

‘‘Our survey confirms that globally, rationing insulin is all too common. It also confirms what many already know: respondents from the USA, one of the wealthiest countries in the world, had the highest degree of rationing of insulin and supplies compared to other high-income countries,” said Elizabeth Pfiester, who heads the group, in a statement.

The findings, which relied on questions given to more than 1,400 patients and caregivers in 90 countries, come amid rising rancor over the cost of prescription medicines. Insulin, however, has become something of a poster child in the US.

More than 29 million Americans, or 9.3 percent of the US population, have some form of diabetes, according to the Centers for Disease Control and Prevention. Meanwhile, the average list price for insulin nearly tripled between 2002 and 2013, according to the American Diabetes Association. Fifteen years ago, for instance, a patient with diabetes might have paid $175.57 for a 20-milliliter vial of the long-acting insulin Humulin R U-500. Today, that medicine would cost $1,487.

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As we have noted previously, high prices have hit patients without insurance especially hard because their out-of-pocket costs are tied to list prices. In response, some families have protested outside offices of the big insulin makers, with some bringing ashes of their children that died after rationing their insulin. Recently, some people with diabetes have been taking buses or forming caravans to drive to Canada, where insulin sells for roughly one-tenth of what it costs in the US.

Meanwhile, a study estimated the cost to produce a vial of human insulin is between $2.28 and $3.42, while the cost to produce a vial of most analog insulins is between $3.69 and $6.16. Consequently, the price for diabetes medications — and insulin, in particular — have become a growing symbol of the angst in the US over the rising cost of medicines and, in turn, generated strong responses among lawmakers.

More recently, an analysis found that total Medicare Part D spending on this diabetes treatment rose 840 percent in the decade between 2007 and 2017, from $1.4 billion to $13.3 billion, thanks to both rising prices and a growing number of patients. Average spending per person increased by 358 percent between 2007 and 2016, from $862 to $3,949. Aggregate out-of-pocket spending quadrupled from $236 million to $968 million.

Over the past several months, the House Energy and Committee’s Oversight and Investigations Subcommittee held a hearing on insulin pricing and grilled executives from Eli Lilly (LLY), Novo Nordisk (NVO), and Sanofi (SNY). The Senate Finance Committee launched an investigation, and two US senators asked three of the nation’s largest health insurers to provide a raft of data about pricing, rebates, and plan coverage for insulin.

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In response, Sanofi began offering a program to lower the cost of the diabetes treatment to $99 a month for uninsured patients and others who pay cash in the US. And Lilly has begun selling a so-called authorized generic version of the Humalog insulin, which means the medicine is identical to the brand-name drug, at half the list price.


Ed Silverman can be reached at ed.silverman@statnews.com. Follow him on Twitter @Pharmalot. Follow Stat on Twitter: @statnews.