LOUISVILLE, Ky. — Kentucky has the 4th-highest mortality rate due to diabetes in the nation, according to state officials. To combat the problem, new legislation is helping a portion of those with diabetes in Kentucky to afford insulin, which can be potentially lifesaving.
Many argue it’s a great first step, but there are still too many people without a safety net.
81-year-old Anna Crowley found out the insulin her doctor prescribed to control her diabetes isn’t an option even though it is available at her local pharmacy.
“I can't afford $400 a month," said Crowley, who lives in Louisville.
She said it’s not sufficiently covered by her health plan.
“They definitely shouldn't be this expensive," she said.
So she’s settling for another version of insulin she buys from Wal-Mart. She says it doesn’t work as well. The high cost of managing her diabetes has made her cut costs elsewhere, like not buying new shoes or clothing she said.
But she puts that off for a potentially lifesaving drug.
The pharmacy owner, Rebecca Fletcher, said her hands are tied.
“A bottle of rapid-acting insulin… can start off, you know, around $275 to $300," said Fletcher.
Other types are even pricier.
“So that's going to be around $440," said Fletcher.
A vial of insulin at her pharmacy costs up to around $700. That's if someone needed insulin without adequate insurance. But it costs just a small fraction to make. So why is it so expensive?
“It's a great question," said Fletcher.
Between 2014 and 2018, the average list price of insulin in the United States increased by more than 40%, according to researchers at the University of Southern California (USC) Schaeffer Center for Health Policy & Economics.
The FOCUS team interviewed Fletcher, along with nonprofits, lawmakers and endocrinologists about why.
“It's a very complicated problem," said Fred Williams, an endocrinologist at the University of Louisville.
The problem of insulin’s skyrocketing cost stems largely from the limited competition and lack of transparency throughout the supply chain. Industry experts said that enables parts of the supply chain to reap big profits.
“Everyone's just kind of taking a cut here and there and there," said Fletcher.
Among those most responsible for the rising cost of insulin, according to researchers, are middlemen. They include the wholesaler, pharmacy, health plan and pharmacy benefit manager (PBM) who negotiates prices. Over the years, middlemen have grown to account for more than half of insulin’s cost according to the USC researchers.
Fletcher said the patient ultimately pays the price.
The result can be devastating. Williams said some patients make their insulin last much longer than it should.
“They ration their medicine," says Williams.
It can lead to serious health complications.
“Like heart attack, stroke, blindness," he said.
It can even lead to death. But recent legislation in Kentucky has made strides to make insulin more affordable. As of January 1, Kentucky became one of 20 states to put a cap on the monthly amount people with diabetes pay for their insulin. Washington D.C. also has an insulin copay cap in place.
But it only applies to a portion of Kentucky’s diabetic population: state employees and people with state-regulated health plans.
“So it catches a lot of people in Kentucky," said Rep. Patti Minter, (D) KY 20th District.
But it doesn't catch everyone. Minter estimates the legislation applies to less than half of people with diabetes in the state. For the rest, insulin prices may be insurmountable.
“Like people who are uninsured or people who have certain types of health plans," said Minter.
The next step, she said, is for state and federal legislation to bring down the cost of insulin for those who are uninsured or under-insured.
"I have been working on legislation with other lawmakers during the current legislative session to close the gap on access to insulin for all. House Bill 42, Alec's Law, would create a continuing program and an emergency program for insulin access for uninsured people and for those whose insurance plans are not covered by last year's insulin bill," said Minter.
For now, Fletcher said many who can’t afford insulin are silent sufferers.
“There's a lot of people who kind of hide themselves," says Fletcher.
Crowley said she’ll be one of them. She won’t be going to her pharmacy anytime soon because she can’t afford to. She describes the feeling that overwhelms her.
“Mostly angry," she says.
She said she's angry over something that costs as little as around $3 to make but sells to people like Crowley for multiple times that amount.
“Somebody is really making a lot of money off of this," said Crowley. "People with diabetes didn't ask to get it, you know we need help.”
WHAS11 contacted local hospitals to find out the possible impact of high insulin prices for people in the Louisville community. A total of 660 people entered Norton Healthcare’s emergency departments for diabetic ketoacidosis in 2021, which represents more patients than in any single year since 2016.
That’s a more than 24% increase in patients. Diabetic ketoacidosis is a serious complication of diabetes, which can occur if people with diabetes ration or fail to take insulin to regulate their blood sugar.
STATEMENTS FROM INSULIN DRUG MANUFACTURERS
“Changes in the U.S. health care system and the increased use of high-deductible health plans have shifted greater costs onto the consumer. The cost a consumer ultimately faces is the outcome of a complex pharmaceutical distribution system that involves many different players. As a result, an increasing number of Americans are exposed to the full retail price of a medicine,” said Kristiane Bello, a spokesperson with Eli Lilly and Company, one of the nation’s three major insulin manufacturers. “Until meaningful reforms take place, Lilly offers a variety of affordability solutions that have helped reduce out-of-pocket costs for Lilly insulin by 44 percent to $21.80 over the past five years. We encourage anyone who needs help paying for their Lilly insulin to call the Lilly Diabetes Solution Center at (833) 808-1234 or go to insulinaffordability.com to see what options are available.”
About Kentucky House Bill 95, Sanofi, another insulin manufacturer, said: “Sanofi supports state efforts to cap monthly co-pays for covered insulin. We also support legislation that results in patients paying less when they pick up their insulin such as requiring rebates to be shared at the pharmacy counter, requiring plans to cover insulin without applying a deductible, and prohibiting plans from imposing a higher co-pay than its net cost after manufacturer rebates.”
A spokesperson with Novo Nordisk, another insulin drug manufacturer, said the company “is committed to providing support so that no patient has to go without insulin because they can’t afford it. The system we currently have is very complicated – rebates, discounts, administrative fees, co-pays and deductibles all play a role in what people with diabetes pay out-of-pocket. We have several new programs designed to address the accessibility and affordability of the therapies that patients rely on to manage their diabetes. Information about all of Novo Nordisk’s affordability offerings can be found at NovoCare.com. We encourage anyone in need to contact us.”