In the 1920s, when insulin first became available for diabetics to regulate their blood sugar, it was literally a lifesaver. It’s still an essential, life-saving hormone. But these days many of the 30 million Americans with diabetes are seriously struggling, and sometimes outright unable, to afford the insulin their bodies so desperately need. 

“Reports of people dying after being forced to skip doses or resort to dangerous rationing are numerous,” said Newsweek

According to Business Insider, insulin prices have roughly tripled over the past decade even though the drugs themselves haven’t changed. Between 2009 and 2020, a 10-milliliter vial of Eli Lilly’s Humalog insulin jumped from about $93 to $275. Similarly, during the same period, Novo Nordisk's Novolog insulin jumped from about $93 to $290.

A Business Insider video noted that insulin prices from all three U.S. manufacturers have risen at the exact same rate, which, according to the narrator, “shouldn’t happen in a competitive market.” The reality is that there’s no limit to how high insulin prices can go, nor are manufacturers required to disclose their pricing rationales.

Tan Mitchell told Business Insider that her young adult son with type 1 diabetes (formerly known as juvenile or insulin-dependent diabetes) had been cutting down his insulin doses without doctor approval because he knew his family was struggling to afford his insulin. 

Dylan Porteus, who also suffers from type 1 diabetes, told Business Insider how worried he was about insulin costs.

“The part that was at the forefront of my mind was that I might die from this, I might not get what I need. (My insurance) deductible was five, six thousand dollars. Even with them covering half, six vials of insulin, they wanted $837,” Porteus said.

According to Business Insider, a diabetic with a high insurance policy deductible could pay for months of insulin out of their own pocket before insurance reimbursement kicks in. One vial of insulin costs about $285 a month, and most diabetics need two to four vials a month. 

“You don't know if you will have enough of a freaking liquid that your whole life depends on. You don't know if you have enough life. That's what being not sure if you can afford your insulin means,” type 1 diabetic Marina Tsaplina told Business Insider.

Some patients have resorted to online crowdsourcing on GoFundMe to pay for prescription medications, according to an NPR report.

When Canadian researcher Dr. Frederick Banting and his team first discovered insulin in the early 1920s, they sold their insulin patent rights to the University of Toronto for a grand total of $3. The university, for its part, allowed pharmaceutical companies to manufacture insulin without paying royalties. Banting, who famously said that “Insulin belongs to the world, not to me,” wanted insulin to be widely available and affordable to the public through mass production. 

Nearly a century later, public outrage over rapidly rising insulin costs is causing some states to intervene.

Price Cap Legislation

Colorado became the first state to cap insulin prices. Under a bill signed by Gov. Jared Polis in May 2019 and effective Jan. 1, 2020, patients won’t pay more than $100 a month for insulin, considerably less than the $600-900 month many pay now, according to CBS Denver.

“We declare that the days of insulin price gouging are over in Colorado,” Polis said while signing the bill, as reported by CBS Denver.

However, the Colorado law does not limit what the three U.S. insulin manufacturers can charge insurance companies, and it’s expected that insurers will make up that cost difference, The Denver Post reported. 

In January, Illinois became the second state to enact legislation capping insulin at $100 per month, although that law won’t go into effect until January 2021, WGNTV reported. Modeled after the Colorado law, the Illinois bill was opposed by insulin manufacturers Eli Lilly, Novo Nordisk and Sanofi as well as by BlueCross and BlueShield of Illinois, the Illinois Insurance Association, and the Illinois Manufacturers’ Association, according to The Chicago Tribune.

Lawmakers in several other states have recently introduced similar bills, but some advocates assert that price cap legislation doesn’t go far enough, according to Newsweek. Florida’s bill stalled because lawmakers worried that drug companies would have to “foot the bill.”

Insulin manufacturer Sanofi told Business Insider that it has raised insulin prices “to help offset the cost of higher discounts and rebates,” and that these price increases “haven’t kept pace with the discounts.”

Manufacturer Eli Lilly had its own take on the insulin situation.

“Approximately 90 percent of people using Lilly insulin pay $50 or less each month because of their insurance designs, but others still need help,” the drug company told Business Insider.

And so the controversy continues. Oklahomans struggle with insulin costs, according to Fox 25, while the death of a diabetic Alec Smith is moving Minnesota lawmakers to address insulin price gouging, according to Twin Cities Business. And WMBF News reports that parents have even brought the ashes of their dead diabetic children to Sanofi offices in Massachusetts.

“What's happening with insulin is a real violation of our expectations, because this is an old drug that is now becoming inaccessibly expensive, long after its worth has been proven, and long after that cost of original innovation of these drugs has already been recouped,” Dr. Jeremy Greene of Johns Hopkins University told Business Insider