Frederick Banting could have made himself a very rich man when he discovered insulin in 1923. Instead, he refused to even put his name on the patent, feeling it was unethical to profit from a discovery that could save lives.

Banting and his co-inventors, James Collip and Charles Best, sold the patent for insulin to the University of Toronto for $1. The trio wanted the lifesaving medicine to be affordable for all who needed it.

Fast-forward to 2021 and it’s clear those wishes aren’t being met. The drug relied on by 30 million Americans with diabetes has become so expensive that 1 in 4 people ration its use; some can’t afford it at all. It is a health crisis driven not by disease but desire for profits. That’s not going to change without government action.

The problem isn’t scarcity. The three insulin manufacturers who control 90% of the world’s supply (and 100% in the United States) are producing enough of the drug to meet demand. But that hasn’t kept costs low. A vial of insulin can cost as much as $250, while a pack of insulin pens runs between $375 and $500. According to a study by the Health Care Cost Institute, a person with Type 1 diabetes will spend an average of $6,000 a year on insulin.

And, as those with diabetes point out, there really is no choice whether or not to use the drug. You use it or die.

That has given pharmaceutical companies tremendous leverage in setting prices. A vial of Humalog, a brand of insulin manufactured by Eli Lilly, cost $21 in 1996. It now goes for as much as $400 — a more than 1,800% increase, Dr. Kasia J. Lipska, an endocrinologist and assistant professor at Yale School of Medicine, told a congressional committee in 2019.

During that time, she said, “there’s been no innovation to improve Humalog. It’s the same exact insulin hormone. The only thing that’s changed is the price.”

The drug giants and pharmacy benefits managers blame each other for the skyrocketing costs. In a sense, the argument benefits them both because the constant quarreling stirs confusion and delays any meaningful change. Both are happy with the status quo. They are making billions on a life-saving drug that was all but given away in an attempt to save lives.

Again, nothing will change without legislative action.

“The prices of diabetes medications — and insulin in particular — are far higher in the United States than they are overseas, in part because certain federal programs lack the authority to negotiate directly with drug manufacturers,” a congressional study found in 2019.

According to that study, the cost of insulin in the U.S. for uninsured Americans is more than 13 times the price than in Canada, 15 times more than in the United Kingdom, and 23 times more expensive than in Australia.

A major element of President Joe Biden’s so-called “Build Back Better” plan would cap copays for insulin at $35 for Medicare Part D and private group or individual health care plans.

It is an exceedingly simple and modest idea that puts the needs of those with diabetes first, a place they haven’t been in this debate since 1923.

Seven states, including our New England neighbor, Maine, haven’t waited for Congress to act, enacting their own copay caps. Massachusetts, sadly, has let legislation linger. One bill before the Senate would cap consumers’ out-of-pocket costs for the drug. A House measure would establish a program to provide emergency insulin to those in need at no or low cost. It’s time for lawmakers to move on both.

It shouldn’t have come to this. Yet here we are. If we truly want life-saving change, we can’t afford to wait for pharmaceutical companies or pharmacy managers to make it happen.

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