“It’s not like a new drug where you don’t really know what it does,” Di Franco says. “This is a drug that we already know what it does, and we just have to see if we made it correctly.”

In many ways, the Open Insulin group’s ambition hearkens back to the intentions of the original discoverers of the drug. In 1923, Frederick Banting, Charles Best, and James Collip sold the patent for insulin to the University of Toronto for $1 each because they believed such an essential medicine should be available to everyone who needed it.

The original patents for the insulin molecule have long since expired, but patents on parts of the production process — a strategy that has been famously used (and arguably abused) by drug companies — remain because pharmaceutical companies keep tweaking how they make it. Most insulins sold today are synthetic analogs that have been adjusted to last longer or act faster, which is one reason pharmaceutical companies give for why the cost of insulin has skyrocketed. These changes have prevented generic drug manufacturers from entering the market. Eli Lilly recently announced it would release its own generic version of Humalog at half the price, but without the competition offered by a dedicated generic drug manufacturer, costs aren’t likely to drop significantly any time soon.

A 10-liter culture of yeast can make insulin for 10,000 people, and the start-up costs could be as low as just $1 per person.

“From a logistical standpoint, none of this stuff justifies the increased price,” says Thompson. “The technology is basically the same as it has been for the last 30 to 40 years. But instead of the typical market logic of a generic [insulin] coming along to make things cheaper, we have this evergreening effect where the drug companies will make these minor modifications to the drug to extend the patent.”

Insulin costs aren’t high everywhere, though. In Spain, for example, insulin costs about $6. The pharmaceutical companies that provide insulin claim the complex U.S. insurance systems drive up the price. Specifically, they place the blame on pharmaceutical benefits managers, middlemen who serve as go-betweens for drug companies and health insurers. Representatives for the three main insulin manufacturers — Eli Lilly, Sanofi, and Novo Nordisk — recently testified before Congress that the list price of the drug is inflated because of the vouchers and rebates that they provide to the benefits managers, who then pass those savings on to the health insurers. As a result, they say the net price of the drug — what the insurance companies actually pay — is much lower than the list price.

“It’s a very distorted system,” says Dr. Mariana Socal, a scientist at the Johns Hopkins Bloomberg School of Public Health. “The manufacturer publicizes that they’re charging, say, $500. They put the price very, very high, even though they claim that at the end of the day they’re going to be paid $200. So what is happening? Why do you need to say it costs $500 if you’re willing to be paid just $200? What’s happening to the other $300?”

Socal says that the rebate money is split between the insurance providers and benefits managers, and patients see none of the savings. If you’re uninsured, you pay the list price, not the lower net price. If you are insured but have a deductible, you have to buy the drug at the list price before your insurance company will kick in. And even with full insurance coverage, the co-payment for the drug is still a percentage of the higher list price, not the cheaper net price.

“It’s a very convoluted back and forth of money that happens with very low, if any, value to the beneficiary, the insulin user,” Socal says. “It’s absurd.”

There are currently several lawsuits accusing the three drug companies of price fixing. One class action complaint claims Eli Lilly, Sanofi, and Novo Nordisk raised the list price of insulin in lockstep over the last 20 years, stating that the companies have been “unlawfully inflating the benchmark prices of rapid- and long-acting analog insulin drugs,” and placing them in violation of the Racketeer Influenced and Corrupt Organizations Act.

“The interests of the companies making the medicine and the interests of the patients are very different,” says Di Franco. “The company wants to do whatever is most profitable, and it is obligated to do so in many respects. And that is rarely what is best for patients.”