The next morning Smith called in sick to work. His girlfriend tried to reach him repeatedly on Monday, but had to work. She planned to check on him Tuesday morning. She did, but it was too late.
As Smith-Holt recounted the story, she said her son never asked for help. “I wish he would’ve come to me,” the Richfield, Minn., woman said, but added that he was very independent.
And although it’s hard for her to tell the story of her son’s death, she said, “I’m hoping the story gets out there. Somebody needs to make a change. This can’t continue. More people will die or end up in the hospital. I want to try to save other lives.”
More than 7 million Americans require insulin
Smith-Holt isn’t alone in trying to draw attention to this problem. Two years ago, the American Diabetes Association asked Congress to hold hearings to determine why the cost of insulin was skyrocketing.
Congress recently did just that, and the ADA’s chief scientific, medical and mission officer, Dr. William Cefalu, testified before the U.S. Senate’s Special Committee on Aging.
“Insulin is a life-sustaining medication for approximately 7.4 million Americans with diabetes, including approximately 1.5 million individuals with type 1 diabetes. There is no substitute,” Cefalu said.
He told senators insulin costs about $15 billion a year in the United States. Between 2002 and 2013, its average price tripled, according to Cefalu.
So, why has the price of insulin gone up so dramatically?
Unfortunately, there are no easy answers.
The ADA found there was little transparency in pricing along the insulin supply chain. It’s not clear how much each intermediary (wholesalers, pharmacy benefit managers and pharmacies) in the supply chain benefits from the sale of insulin. It’s also not clear how much manufacturers are paid as this information isn’t publicly available either.
The ADA also noted that the current pricing and rebate system encourages high list prices (that’s what someone without insurance or who has a high deductible is often stuck paying).
Pharmacy benefit managers (PBMs) have substantial market power and can control which insulins are approved to be on an insurer’s list of approved medications (formulary). PBMs receive rebates and administrative fees, but don’t have to disclose them. They can exclude insulins from a formulary if their rebate is too low, according to the diabetes association.