My family has a story that my father swears is true. When my great-grandfather came to this country, he and his wife ended up working in mill towns in Massachusetts. He got diabetes and grew progressively more and more ill. His doctor offered him the chance to participate in a medical trial in the late 1910s or '20s (my father isn't certain of the year). My great-grandfather declined to be experimented on, and died not long after.
That trial was for purified animal-sourced insulin, which would soon become the world's most effective treatment for diabetes. My first memory of insulin was watching my dad's mother inject herself when we visited every summer. It seemed like such a simple way to save lives and make diabetes a chronic condition, rather than the fatal disease that had afflicted my great-grandfather.
Today, insulin is synthetic, reliable, and subject to the whims of pharmaceutical pricing that render such life-saving technology inaccessible to far too many people. A major study published last fall in The Lancet predicted that, of the 79 million people around the world with Type 2 Diabetes (the type potentially controllable by diet) who will need insulin by 2030, only half of them will have consistent access to the drug.
People who do require insulin (whether they have Type 1 or Type 2 diabetes), their family members, medical professionals, and some elected officials, are focusing on lowering the price. Making insulin cheaper will save lives; it's also a first step toward broader price controls on drugs. In Minnesota, for example, Sen. Amy Klobuchar (D) launched her presidential campaign by vowing to take on drug companies for predatory pricing, referring specifically to the death of 26-year-old Minnesotan Alec Smith. Smith died last year while trying to ration his insulin until he could afford more. His mother has become a dedicated campaigner for pharmaceutical reform.
That reform has proven difficult. The United States Congress has held hearings on the subject, but passed no legislation curtailing high insulin prices, instead leaving the matter to the states. The states have likewise failed to act over the last few years. In the waning days of May, though, Colorado managed to pass a bill setting a maximum co-payment cost on insulin. Minnesota, on the other hand, brought an insulin bill into the final early morning hours of their legislature's session, but couldn't get it over the finish line. Taken together, these two efforts reveal the promise and the challenge of building a system to ensure that everyone has the insulin — and maybe other similar drugs for chronic conditions — that they need.
In Minnesota, Democrats and Republicans were each backing a bill that would require insulin manufacturers to pay a registration fee to support an emergency insulin fund for Minnesotans who can't afford the drug. The legislature closed its session in mid-May without passing a budget, then reassembled for a hectic 24-hour special session in order to finish it. Advocates assumed the insulin bill in some form would be included in the budget, but when the final package was unveiled, the bill had vanished.
State lawmakers in Minnesota are blaming each other, but when I spoke to state senators from each party, it became clear they all wanted to ensure that nothing like the death of Alec Smith happened again. Here we have a situation in which the parties largely agree on both the goal and the methods of achieving that goal, but didn't pass a bill, and are now angry at the other party.
DFL (Democratic-Farmer-Labor Party) State Sen. Matt Little says that he's been working on a number of more substantive bills on insulin pricing and recognizes that the proposed emergency safety net was a partial measure — but that's exactly why he wanted to make sure to get at least that much done.
"People are getting sick and they're dying because they can't afford these absurd prices for insulin," he says. "We need some sort of program, when someone can't afford it, so they don't die — that's it!" Little is concerned that drug manufacturers, who don't want to pay to support emergency access to insulin, are to blame for lobbying behind the scenes.
GOP State Sen. Scott Jensen says that he'd like to see emergency funding for all chronic medications, including insulin, EpiPens, asthma medication, and anti-seizure drugs.
They both want to look at the whole supply chain for insulin and figure out how to make sure it remains accessible to those who need it and affordable to everyone — and both agree that such access must be funded by the companies profiting from expensive drugs. This feels like a solvable problem. The two senators sound mostly in agreement. Something similar has happened nationally, where legislators across the party lines concur that something has to happen to make insulin affordable, but not what exactly, and so nothing gets done. Most Americans who need cheaper insulin have to leave the country to buy it.
Still, there are promising developments in Colorado, the first state in the nation to pass an insulin-cost mitigation act. Colorado Gov. Jared Polis has signed a bill capping co-payments for insulin at $100 a month while also mandating a study on how to lower prices throughout the system. This second part is critical not just for Colorado, but for the whole nation. Julia Boss, president of the Type 1 Diabetes Defense Foundation, says that, while the Colorado bill may save patients money, "[it] does not cap insulin 'costs.'" Instead of focusing on the price at the cash register, she says, better legislation would engage the actual manufacturer costs. Boss notes that "U.S. net prices for insulin [have been] falling over the past four years (manufacturers are now reporting annual decreases of 8 percent and more)."
Insulin pricing is yet another case where state lawmakers can choose whether or not to save the lives of their constituents. Good state-based health policy can fill the gaps while the federal government dithers.
This story originally appeared on Pacific Standard, an editorial partner site. Subscribe to the magazine's newsletter and follow Pacific Standard on Twitter to support journalism in the public interest.