Now, more and more people are sounding the alarm on social media and to Congress.
Valerie Floyd-Hagewood has been living with Type 1 diabetes for 37 years and was diagnosed at 18. She’s watched as the price of insulin, the only thing that can keep her alive, has doubled and even tripled.
“We have families that paid $90 for one month’s supply a couple of years ago. Now, they’re paying $200 to $300 out of pocket,” said Jenny Holder with the Juvenile Diabetes Research Foundation of Middle Tennessee.
Floyd-Hagewood knows what it’s like to have to ration insulin.
“It’s not right somebody has to make a choice to feed their family or a child or do anything like that and not have the money to afford the medication they need.”
“Drastically overpriced and they do it because they can,” Floyd-Hagewood said. “I had to make a choice between insulin or feeding my child. And I, of course, fed my child.”
Rationing insulin is a potentially deadly mistake for Type-1 diabetics across America, and it’s one they admit they’re doing now as insulin prices skyrocket even more. They’re ending up, just like Floyd-Hagewood, in ketoacidosis, in intensive care, hoping to live.
“They are rationing it,” Holder said. “We do hear about times across the country where people have passed away because they weren’t taking their insulin.”
A Yale University survey finds 1 in 4 Type-1 diabetics ration their insulin because they can’t afford it.
The hashtag #Insulin4All is helping Type 1 diabetics connect, mobilize and share their stories with lawmakers and regulators who they hope will help.
The Juvenile Diabetes Research Foundation is working on a Coverage 2 Control campaign, already delivering a petition to insurance and pharmaceutical companies to stop what it calls price gouging.
Floyd-Hagewood sums it up this way, “It’s not right somebody has to make a choice to feed their family or a child or do anything like that and not have the money to afford the medication they need.”
Type-1 and Type-2 diabetics both use insulin, but Type-1 diabetics cannot live without it.
According to the American Diabetes Association, the average list price of all insulin has skyrocketed in recent years, nearly tripling between 2002 and 2013, adding, “The reasons for this increase are not entirely clear.”
In a 20-year period, from 1996 to 2017, the Union of Concerned Scientists states insulin prices rose by 1,157 percent.
We asked for an on-camera interview with executives at Eli Lilly, but Senior Director of Corporate Communications Kelley Murphy sent an email, stating, “We will kindly decline the opportunity for an interview.”
Instead, Murphy notes, “our last price increase for insulin was May of 2017, which has been our one price increase over the last 26 months.”