Rebecca Kelly never imagined she would drive from her Madison County home all the way to Canada just go to a pharmacy.
But she’s done it. Twice.
“This is pretty much gold to someone living with diabetes,” Kelly said, holding up a vial of insulin.
Then again, to Kelly, who has Type 1 diabetes, these aren’t just medicines.
“It’s just like oxygen,” she said. “You don’t get oxygen, you die. You don’t get insulin, you die. And that’s scary.”
The price tag makes that scarier.
Soaring insulin prices have left some people fighting back, if not fighting to survive. Many people with diabetes – whether Type 1 or Type 2 – use the drug to manage their condition.
The average price of insulin in Kentucky more than doubled from 2012 to 2016, according to data from the non-partisan non-profit Health Care Cost Institute. Across the country, the average price of an insulin vial ranges from $96 to $390, GoodRx says.
That is why Kelly and her husband made those trips to Canada – including one trip right before the pandemic largely closed the border – buying eight vials for less than the price she would have paid back home for one.
“Walked out with them in my hand and was saying a lot of thankful prayers for that,” Kelly told WKYT’s Garrett Wymer. “Because here, had I done that, it would have been $2,400 – for the same exact medicine, from the same exact company. Our healthcare system here is broke.”
Kelly said she was already struggling to pay for insulin on the high-deductible insurance plan she and her husband were on, but when their insurance rates skyrocketed, they were forced to switch to a cost-sharing plan that does not cover prescriptions – meaning they are paying out of pocket for insulin, pump supplies, tubing and other supplies.
Before she drove to Canada, where she was able to buy insulin for $30/vial, Kelly had been paying $1,200 for a 90-day insulin supply, or $300/vial, she said. (During the pandemic, when she hasn’t been able to go across the border, the manufacturer of the insulin Kelly uses has provided what she derisively calls a “COVID coupon” that allowed her to get insulin for $30/vial for a limited time.)
Medical expenses for people with diabetes more than double those for people without it, the American Diabetes Association says. In Kentucky, the latest estimates put the total tab at more than $3.5 billion.
And that was from 2017.
But those high prices come with an even steeper cost. One medical study found that one in four people with diabetes rationed their insulin – a decision that can be deadly.
That is why experts say there is a need to bridge the great health divide not just for rural Kentuckians but for all Kentuckians with diabetes.
“It is a complicated illness to manage,” said Dr. Frances Feltner, director of the UK Center of Excellence in Rural Health, “but you can live healthy even though you’ve been diagnosed with diabetes.”
For rural Kentucky residents, however, diabetes can be even harder to manage. Yet doctors have found higher incidence rates there, too.
Through the Kentucky Homeplace program, community health workers are out in 30 eastern Kentucky counties, working closely with residents there on education and prevention to avoid Type 2 diabetes and other conditions, and also often helping them get their insulin and other needed medications.
“We are in a crisis with insulin,” said Rep. Danny Bentley, R-Russell. “We’re always worried about the opioid crisis, we’re worried about the COVID crisis, but we’re also in a diabetic crisis. And it’s more preventable than the other ones.”
Rep. Bentley knows the need on several levels: He’s from Greenup County in northeastern Kentucky; he’s a pharmacist by trade, practicing for 50 years; and he, too, has diabetes.
“We had to do something about it,” he said, “because we had people dying from it.”
State lawmakers have already approved two bills in Bentley’s series of diabetes-related legislation. The first allows patients to get a 30-day emergency supply of insulin without a prescription. The second capped out-of-pocket costs for insulin at $30 for a 30-day supply for people on state-regulated health plans and some others.
For 2022, Rep. Bentley pre-filed an insulin safety net bill and another bill that would cap co-pays for other diabetes supplies, because the expenses do not stop at insulin.
Overlay patches, glucose tablets, lancets, test strips, syringes, alcohol swabs, sensors – these are just some of the supplies Rebecca Kelly has to purchase, some of which she uses regularly and others she has to keep on hand just in case her continuous monitoring system goes out.
But the receipt runs long, and the costs run high. Kelly said she could easily spend anywhere between $12,000 and $15,000 annually in total.
As head of the Kentucky chapter of #insulin4all, she is using her personal story to push for change.
“There are a lot of people going without, and there are a lot of people suffering,” she said. “This is something that has to be addressed. Because we can’t lose one more person. One more life. It’s not worth it. It’s not worth it when we can fix it.”
Those state laws and bills do not cover everyone. But Kelly says they are a start.
She hopes insulin rationing – and whirlwind international road trips to purchase vials – can soon become a thing of the past.
Similarly, part of the Build Back Better bill on Capitol Hill includes a provision that would cap co-pays for insulin at $35 for a one-month supply. The U.S. House of Representatives approved that bill back in November. Senate leaders have said they will vote on it in January, even though it does not seem to have enough votes to pass.