JONESBORO, Ark. (KAIT) - How much are you willing to pay or sacrifice for the price of living? Outrageous question, right? Well, it’s one some have to juggle when it comes to the price of insulin.
According to the Arkansas Center for Health Improvement, the average cost for insulin in Arkansas rose from $401 in 2013 to $617 in 2018.
Many factors that play into it and it’s affecting many of you.
“I didn’t ask for this to happen, so why am I having to pay so much for this to keep me alive?" insulin patient Kaitlyn Hendrix said.
There is a hard reality for many, their body no longer makes a hormone needed to survive.
So, in turn, they spend money to buy that hormone, known as insulin at pharmacy counters.
If, they can afford it.
“What causes or drives that cost is not extremely clear or easily understood without lengthy explanation or definition and consideration,” owner of the Pharmacy at Brookland, Dr. Michael Barkley said.
However, with or without insurance, there is a growing concern about that price tag of insulin.
Hendrix is a dance educator. She fell in love with the craft at a young age and today, she finds purpose in her passion by teaching children.
She is also a Type 1 Diabetic, diagnosed at age 6 and this month, she turns 26. This is a time many get the chance to live and experience their life.
"You get to live your life, you get to be so excited and not worry about this or that…. not when it comes to an auto-immune disease," Hendrix said. “I have always had to worry about something extra.”
Hendrix will is no longer be covered by her parent’s insurance, concerned now with if her teacher-based plan will cover her insulin prescription.
"I can’t just sit back and wait for something to fall in my lap like I have to do something, or I can lose my life. If I don’t get my insulin, if I don’t get the amount that I need every day, something traumatic can happen like that," Hendrix said.
She is not alone in this fight.
Just seven years ago, Erik Edwards was dropped from his mother’s plan. He recalls the rough experience.
“The expenses of the needles, the test strips, all of the supplies that go with it seemed to add up a lot every month," Edwards said.
But, thanks to his insurance plan, he’s only paying around $25 per vial. He purchases two a month.
However, he admits he needs faster-moving insulin.
“I’ve got my go-bag, it’s got snacks and extra needles and everything I need and I just carry it with me wherever I go," Edwards said. “It’s kind of like my security blanket, too. Like okay, I know I’m good.”
After having Type 1 Diabetes for about 20 years, he has found a way to live a normal life.
But, the stories of both Kaitlyn and Erik are only two of millions.
According to that same study done by the Arkansas Center for Health Improvement, the cost of an insulin prescription in Arkansas rose by more than 50 percent in a five-year time span.
“This will tell you how egregious this is. The guys that invited insulin, that first developed insulin for use of human beings wouldn’t even put their name on," Barkley said. “They said that this is important enough to the human race that we don’t even want to patent it, we’re going to give it to the world, let them have it because we don’t want the price to run upon it.”
He says the high price of insulin happens way before the patient is paying at his register.
"It’s gone from a free product to something that’s still life dependent and cannot be obtained due to cost. That makes no sense,'' Barkley said.
Dr. Barkley says Pharmacy Benefit Managers are just one of the factors affecting the price you pay. View the graphic created by Beyond Type 1 to understand the breakdown.
Insurance companies hire P-B-M’s, which help determine which medicines your insurance plan will cover.
P-B-M’s are not regulated, meaning there’s little oversight.
“It’s not an unknown problem. It’s complicated and multi-faceted but it’s not rocket science,” Barkley said.
He says the increasing cost of insulin is not unique to insulin. It’s a medication issue, across the board and that is essentially being provoked by one thing.
“It’s money, it’s greed. It boils down to greed and who’s getting paid and who’s paying for it,” Barkley said.
That act of greed, Barkley says, falls on the backs of people like Kaitlyn.
"In about 10 or so years, I am not going to be able to afford how I have to live," Barkley said.
Rationing, selling off possessions are just some of the ways people afford insulin.
“It’s become such a business game. That’s shameful cause there are people dying needlessly.”
Hendrix finds different outlets on social media to help her with her journey. She says the hashtag #T1D has many testimonies of people battling the same disease.
She also stands with T1 International, a non-profit that fights for accessible insulin for all.
Dr. Barkley also suggests you find a small, independent pharmacy. He says these businesses are more likely to spend time on your prescription, looking for rebates, coupons or other discounts.
As far as Pharmacy Benefit Managers, this is a long and often complicated topic.
There’s even a case from right here in Arkansas which could be heard at the U.S. Supreme Court this spring.
We will continue to follow this case and bring you updates.