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Expand chart
Data: Health Care Cost Institute; Chart: Naema Ahmed/Axios

The amount that people with Type 1 diabetes spent on insulin, before subtracting rebates and discounts, doubled from 2012 to 2016 while daily insulin use mostly stayed flat, according to a report from the Health Care Cost Institute, which analyzed health insurance claims from that time span.

The big picture: There are some limitations with the report's data. Regardless, insulin prices and out-of-pocket costs have enraged diabetic patients and parents, who have been at the forefront of the drug pricing debate by explaining how difficult it is to obtain the life-or-death medication.

By the numbers: The average patient with Type 1 diabetes spent $5,705 insulin in 2016, according to HCCI.

  • That represents 31% of that patient's gross health care spending for the year.
  • In 2012, gross insulin costs represented a relatively lower 23% of the average diabetic's health care spending.

Yes, but: There is a major caveat. The report does not factor in rebates and discounts, and therefore the spending totals don't reflect what was actually paid.

  • Insulin makers say their net prices have barely budged over the past several years because most of the price increases go toward health insurers and pharmacy benefit managers in the form of rebates.
  • However, HCCI modeled a scenario that assumed 50% of an insulin product's list price went toward rebates or manufacturer coupons, and the firm still found insulin prices were the leading reason for higher spending among patients with diabetes.
  • Neither Sanofi nor Novo Nordisk addressed specific questions about that rebate scenario. Eli Lilly did not respond to any questions.

What they're saying: Sanofi and Novo Nordisk both issued statements that blamed rebates, high deductibles and other insurance designs as the reasons for higher spending, and they said most of their patients can get insulin for less than $50 per month.

  • HCCI did not break down insulin costs by out-of-pocket spending versus premiums.

The bottom line: It's not as though the situation is about to change. Two of the three major insulin makers, Sanofi and Novo Nordisk, raised prices on their products for 2019, while Eli Lilly has not publicly made a decision yet. Meanwhile all three companies are in Congress' crosshairs.

Go deeper

Former Sen. David Perdue to launch bid for Georgia governor

Photo: Megan Varner/Getty Images

Former Senator David Perdue (R) plans to announce a campaign against Georgia's incumbent Republican Gov. Brian Kemp Monday, according to a source familiar with Perdue's thinking.

Why it matters: Perdue's challenge to his former ally Kemp sets up an unprecedented "scorched earth" battle between Georgia Republicans fueled by former President Donald Trump, in the battleground state. The news was first reported by Politico.

Updated 59 mins ago - Politics & Policy

Bipartisan tributes flood in for "giant of the Senate" Bob Dole

Then-Vice President Joe Biden and former Sen. Bob Dole at an event put on by the World Food Program where he was awarded the first “McGovern-Dole Leadership Award” in December 2013. Photo: Douglas Graham/CQ Roll Call

Republican and Democratic politicians, including former Senate colleagues, are sharing condolences and memories commemorating the life of Bob Dole, who passed away at 98 on Sunday morning.

The big picture: Dole, the Republican presidential nominee in 1996, was the longest serving Republican leader in the Senate until 2018, when current Senate Minority Leader Mitch McConnell surpassed his record.

Former Sen. Bob Dole dies

Former Sen. Bob Dole in 2019. Photo: Tom Brenner/Getty Images

Former Kansas Sen. Bob Dole passed away Sunday morning at the age of 98, the Elizabeth Dole Foundation announced in a statement.

Driving the news: Dole, a revered figure in U.S. politics and the Republican presidential nominee in 1996, served in the Senate for 27 years, including 11 years as GOP leader. Earlier this year he revealed he had been diagnosed with stage 4 lung cancer.