In the early 1920s, researchers at the University of Toronto discovered a way to extract insulin that would prove life-saving for individuals essentially waiting to die after a Type 1 diabetes diagnosis, and those researchers sold the patent for just $1 to the university to ensure all could have access to the treatment.
Fast forward to the present and Americans are dying from Type 1 diabetes — not for lack of a cure but lack of the funds to obtain it.
Diabetic ketoacidosis is a terrible way to die. It's what happens when you don't have enough insulin. Your blood sugar gets so high that your blood becomes highly acidic, your cells dehydrate, and your body stops functioning.
Diabetic ketoacidosis is how Nicole Smith-Holt lost her son. Three days before his payday. Because he couldn't afford his insulin.
"It shouldn't have happened," Smith-Holt says looking at her son's death certificate on her dining room table in Richfield, Minn. "That cause of death of diabetic ketoacidosis should have never happened."
Since 2012, the price of insulin has more than doubled, leaving those with the least resources struggling to obtain the treatment they need to stay alive.
And when they lose the financial struggle? That can mean loss of life.
Most people's bodies create insulin, which regulates the amount of sugar in the blood. In the U.S., the roughly 1.25 million of us with Type 1 diabetes have to buy insulin at a pharmacy because our pancreases stopped producing it.
My first vial of insulin cost $24.56 in 2011, after insurance. Seven years later, I pay more than $80.
Alec was facing a monthly expense of $1,300 to maintain his insulin treatments after losing insurance through his mother’s plan once he turned 26.
Alec's yearly salary as a restaurant manager was about $35,000. Too high to qualify for Medicaid and, Smith-Holt says, too high to qualify for subsidies in Minnesota's health insurance marketplace. The plan they found had a $450 premium each month and an annual deductible of $7,600.
"At first, he didn't realize what a deductible was," Smith-Holt says. She says Alec figured he could pick up a part-time job to help cover the $450 per month.
"You have to pay the $7,600 out of pocket before your insurance is even going to kick in," she remembers telling him. Alec decided going uninsured would be more manageable.
But determining his next best step would never happen: Alec died less than one month after being booted from his mother’s insurance plan.
His family thinks he was rationing his insulin — using less than he needed — to try to make it last until he could afford to buy more. He died alone in his apartment three days before payday. The insulin pen he used to give himself shots was empty.
Trying to determine why the cost of insulin has risen so dramatically is tricky; everyone seems to have a different answer to the question.
Some blame middlemen — such as pharmacy benefit managers, like Express Scripts and CVS Health — for negotiating lower prices with pharmaceutical companies without passing savings on to customers. Others say patents on incremental changes to insulin have kept cheaper generic versions out of the market.
For Nicole Holt-Smith, as well as a growing number of online activists who tweet under the hashtag #insulin4all, much of the blame should fall on the three main manufacturers of insulin today: Sanofi of France, Novo Nordisk of Denmark and Eli Lilly and Co. in the U.S.
All three companies are currently being sued by diabetic patients in Massachusetts, facing allegations that rising prices come at the expense of people’s health and lives.
[An Eli Lilly] company spokesman noted in an email that high-deductible health insurance plans — like the one Alec found — are exposing more patients to higher prices. In August, Eli Lilly opened a help line that patients can call for assistance in finding discounted or even free insulin.
Nicole Holt-Smith is working to make change so other Americans will not suffer the fate of her son:
"My story is not so different from what I hear from other families," Smith-Holt recently told a panel of U.S. Senate Democrats in Washington D.C., in a hearing on the high price of prescription drugs.
"Young adults are dropping out of college," she told the lawmakers. "They're getting married just to have insurance or not getting married to the love of their lives because they'll lose their state-funded insurance."