At 24, Alec Raeshawn Smith -- a native of Minneapolis, Minnesota -- was diagnosed with type 1 diabetes, which meant he suddenly needed a steady supply of insulin and other costly medical supplies, including test strips, needles and a glucose meter to monitor his blood sugar.
At the time, Smith was covered by his mother's insurance. Under her plan, his out-of-pocket costs totaled around $200 to $300 a month. Then he turned 26, the age at which children age out of their parent's coverage, and his monthly costs without insurance rose to $1,300, driven primarily by the high price of insulin.
Smith earned $35,000 a year as a restaurant manager. Together, he and his mother searched for an insurance plan he could afford.
"The best plan that we could find was running about $450 a month for the premium, and then the deductible was $7,600," said his mother, Nicole Smith-Holt. "When I told him that he was like, 'Well, it's not even worth me getting insurance.'”
To save money, and unbeknownst to his mother, Smith began rationing his insulin supply, taking less than his body needed to maintain normal blood sugar levels. Roughly five weeks after his 26th birthday, he was found dead in his apartment from diabetic ketoacidosis, a sometimes-fatal condition that occurs when the body runs low on insulin. He was just days away from his next paycheck.
"I am angry that he died because the cost of insulin is so expensive that he couldn't afford it," said Smith-Holt.
This is not what the drug's discovers had envisioned. In the summer of 1921, a team of researchers led by Frederic Banting transformed what had been a death sentence into a chronic, yet manageable disease. They sold their patent to the University of Toronto for one dollar each in order to make the drug widely available to diabetics around the world.
Over the past several decades, however, the cost of insulin has increased dramatically. Since 2012 alone, the average price has more than doubled to around $300 a vile. Some of that increase can be explained by the fact that today's modern insulins are far more advanced than they were in the 1920's. But Jesse Bushman, health policy director for JDRF, a nonprofit that funds type 1 diabetes research, said a bigger part of the problem is the way insulin makers do business.
"In order for a pharmaceutical manufacturer to have its drugs covered by an insurance company, they must agree to give rebates off of their list price to the insurer, so in order to pay those rebates, what they do is increase their prices," said Bushman. "So that kind of goes in this sort of vicious upwards cycle. One will raise it and then the other will raise their price and they go back and forth raising their prices."
President Trump has vowed to lower the cost of prescription drugs. As a candidate, he proposed allowing Americans to import cheaper drugs from abroad. But he also drew criticism for appointing Alex Azar as his new Secretary of Health and Human Services, replacing Tom Price, who resigned in September.
Azar recently stepped down as president of the U.S. division of Eli Lilly, one of the three main producers of insulin in the country. At his confirmation hearing, Azar conceded that insulin is too costly, although Eli Lilly enacted steep price increases for its insulin under his tenure. He also voiced some concern about importing cheaper drugs from Canada and other countries.
"I have before publicly stated a position against unsafe importation of drugs into the United States," Azar told a Senate committee.
For Alec Raeshawn Smith's family, the months after his death have been a struggle, but his mother hopes it can help urge lawmakers to act and bring the price of insulin back into line with where its discoverers intended.
"If I can just save one person for sharing Alec’s story, then I did my job," said Smith-Holt.
Support for Sugarland is provided by the Robert Wood Johnson Foundation, the Alfred P. Sloan Foundation, and Science Sandbox, an initiative of the Simons Foundation.