Diabetic Sticker Shock: The high price of staying alive

SARATOGA COUNTY, N.Y. (NEWS10) – The EpiPen isn’t the only drug that’s seen a massive price hike in recent months. Insulin prices have dramatically increased causing a crisis for many families trying to afford the lifesaving drug.

As many as 30 million Americans have diabetes, including many children who depend on insulin. In fact, getting your hands on a small vile of insulin has jumped threefold in 10 years. Now, a local family is wondering how they are going to pay for the medicine to keep their children alive.

NEWS10 ABC visited the Harder family during dinner at their house and saw meal time can get a little complicated.

“Most other families just sit down,” Amy Harder explained.

The Harders have to go through a process before the kids can take their first bite, and mom Amy has to measure all the food on two of her sons’ plates. Her two older sons, Donnie and Joe, have Type 1 diabetes. That’s why, before every meal, their dinner table turns into a bit of a clinic.

Since Donnie’s and Joe’s pancreas have stopped making insulin, they have to make up for it using medicine.

“Joe’s giving himself an injection because he doesn’t have a pump yet,” Amy explained. “He’s only been diagnosed for two weeks.”

At just 12 1/2 years old, Joe has to test his own blood sugar, count his carbohydrates, and get ready for another shot. It’s a nightly routine the Harders are now used to.

“It’s a big part of our life,” Amy added.

Donnie also has a closet stocked with medical supplies.

“He’s got lancets, test strips, extra syringes,” Amy described.

The supplies don’t come cheap.

“With tabs, alcohol wipes each week, we are spending $100-$150 dollars,” Amy said.

That doesn’t count the insulin.

“When Joe was first diagnosed, it was well over $200 dollars out of pocket with insurance,” Amy said.

Since 2002, the cost of insulin has increased more than 200 percent. In a study by the Journal of the American Medical Association, it’s estimated spending on insulin went from $231 dollars to $736 dollars in decades time, which forced families like the Harders to make tough decisions.

“Sometimes it’s as easy as saying ‘do we pay National Grid or do we get insulin,’” Amy said.

And when there wasn’t enough insulin to go around, “We ended up using some of Donnie’s supplies to help Joe.”

As diabetic sticker shock set in for Amy, she called the Juvenile Diabetes Research Foundation for help.

“I couldn’t afford Joe’s medicine at that time,” she explained.

Danielle Unser, who works for JDRF, answered Amy’s call.

“Insulin is not a cosmetic drug,” she stated. “It’s not something if you work hard you can lower your dose. It’s life or death.”

She also explained several reasons for the price hike.

“We buy insurance to keep ourselves healthy, yet we are being priced out of the game,” she said.

In addition, with little competition from drug manufacturers — there are only three companies make the lifesaving drug and a very complicated deal making process between drug companies and pharmacy benefit managers — who are the middlemen who negotiate prices with your insurance company — there is very little transparency on how prices are set.

Amy has now started looking for coupons online to help with her co-pays.

At the end of dinner, there is a more common scene as Amy grills her son about his day, but her worry now has shifted to her youngest son, Matt who hasn’t turned 12 yet.  That is the age Donnie and Joe were both diagnosed.

Novo Nordisk, the only insulin manufacturer to get back to NEWS10, sent the following statement, in part:

One action we are taking today in support of that is to limit any potential future list price increases to no more than single-digit percentages annually.

READ THEIR FULL POSITION

Some states, including New York, are now looking into drug transparency legislation. In fact, there was a bill the Assembly had passed but did not go all the way this year relating to the actions of Pharmacy Benefit Managers and how they set prices.

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