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Rising insulin costs are the price an Aberdeen family pays for healthy kids

Aberdeen American News - 2/23/2019

Feb. 23-- Feb. 23--Delanie Casanova, 10, was diagnosed with Type 1 diabetes on New Year's Eve.

But she and her family are no strangers to the disease.

Her younger brother, Trey, 7, was diagnosed with Type 1 when he just 4.

Since, the Casanovas have racked up tens of thousands of dollars in medical costs -- even with insurance.

Nancy Hartung, registered nurse and diabetes educator at Sanford Aberdeen, can relate. She's watched the cost of a bottle of insulin skyrocket from $60 or so when her son was diagnosed with Type 1 in 2000 to almost $400 today.

The kicker?

Nothing else has changed with the insulin -- not a single thing other than the cost, she said.

According to the American Medical Association, insulin prices increased by nearly 200 percent from 2002 to 2013.

In the three or so years since Trey Casanova's diagnosis, the cost of his insulin per bottle has gone up around $50, said his dad, Jordan Casanova.

A $281 bottle of insulin will last 28 days.

"When we meet our deductible, it's not quite so bad," he said.

It doesn't take the family long to hit a $4,400 deductible and a maximum out-of-pocket expense of $6,000. Before that happens, it's not unusual for the Casanovas to spend more than $1,000 at the pharmacy every month, Casanova said.

Two hundred and fifty test strips -- at $230 -- will maybe last a month. Then there are the supplies for Trey's insulin pump.

And now more strips are needed to test Delanie's blood sugar.

The Casanovas have never had an issue with their health insurance, but Jordan Casanova had to do some serious math when selecting a plan.

With luck, it will keep the family healthy for years to come.

Now, kids fall off of their parents' health insurance plans at age 26 if they don't have their own policies before then. That has many young adults across the country in crisis -- so much so that some are dying.

Minnesota case, headlines

Alec Raeshawn of Richfield, Minn., died June 27, 2017. That was less than one month after he aged out of his family's insurance and couldn't afford $1,300 a month for insulin and diabetes supplies, according to a National Public Radio report.

His death has drawn national attention, and Minnesota's attorney general filed a lawsuit against insulin makers in October 2018.

Other states have followed suit, Natalie Casanova said.

People with Type 1 diabetes have to have insulin or, like Raeshawn, they will die, Hartung said.

"There isn't a choice," she said. "I've read multiple stories of kids, 26 years old, that fall off of insurance. And within six months they're dead because they can't afford the insulin."

That's always something in the back of Casanova's mind.

"I think of it all the time. I would hope by (the time my kids are 26) something is done. I cry every time I hear of another kid being diagnosed. My heart breaks because I know what that's like, and I know the terrifying feeling and how scared everyone is and you're clueless. And then you hear of a 26-year-old that dies ... I cannot even fathom," she said.

"Diabetes is an expensive disease," Hartung said.

She's had patients tell her that they've spent upwards of $1,200 for a month's worth of insulin. Others will just say they can't afford it.

"And they'll go buy it over the counter and wing it," Hartung said. "That's a very scary piece of this for me, as an educator."

Others will purchase their insulin, but ration it by not taking as much as they need, she said.

Both can be dangerous. And Hartung wants to help when she can.

"If someone has questions, come talk to us," she said. "We'll figure out a way to help them afford their insulin."

Type 1, Type 2

Getting people to understand what Type 1 diabetes is just the first hurdle, Casanova said.

She didn't know anything about the disease when her son was diagnosed, but now the entire family is a fount of knowledge.

People she knew who had Type 1 didn't talk about it, she said.

"It was almost like it was an embarrassment. But I told Trey, 'We're going to talk about it. This is your life. This is our life. It's nothing to be ashamed of.' And if we can help some new family figure it out and navigate it, then I want to be the person that can help them," Casanova said.

The first step is understanding that not all types of diabetes are the same.

With Type 1 diabetes, the body attacks itself and the pancreas cannot produce its own insulin.

"It's an autoimmune disease, so there's no stopping it," Casanova said.

A stereotype comes with diabetes because of Type 2, which is caused by a sedentary lifestyle and not maintaining a healthy weight and diet, Hartung said.

Type 2 used to be called adult onset diabetes, but kids are getting it now, she said.

There are many ways to treat Type 2. The doctor will give the diagnosed person the opportunity to make lifestyle changes first, Hartung said. There are oral medications, and then there's insulin.

Regardless of the type, diabetes is nothing to joke about.

"I hear comments, people saying 'I'm going to eat all these donuts and get diabetes,'" Jordan Casanova said. "It doesn't mean anything if you don't have diabetes, but those people don't understand what my kids have to go through every day."

Seeking help

What's the answer to the problem?

"Decrease the price," Hartung said.

The drastic increase in price is frustrating, she said. And there's nothing to justify it. There hasn't been an explosion of new kinds of insulin, and the market hasn't been flooded with a whole bunch of new options, she said.

On a national level, U.S. Rep. Dusty Johnson, R-S.D., said the rising cost of prescription drugs in general, including insulin, is something President Donald Trump discussed in his State of the Union Address, and Johnson expects Congress to address it as well.

He said the U.S. needs the billion-dollar investments by pharmaceutical companies that are developing new medications, but there are companies that are abusing patent protections. And U.S. law treats biosimilar drugs differently. Biosimilar drugs are ones that are almost an identical copy of an original product manufactured by a different company.

Patent protections give pharmaceutical companies exclusive rights to a medication for 20 years before other companies are able to provide an alternative, but Johnson said some companies are adjusting their medication formulas to extend that protection.

"Where we're at right now doesn't work," he said.

Johnson said the current system funds the development of drugs for the world, but that shouldn't be the case.

"Why isn't America driving a harder bargain?" he said.

Natalie Casanova said the same insulin her kids use is just $50 in Mexico. And in Canada it can be purchased for 60 percent less than in the U.S., she said.

Even at a cost, living with Type 1 isn't so bad, Trey Casanova said.

"You get used to it," he said.

Still, there are things he'd rather not do.

"I'd rather do a finger prick than get my blood drawn," he said.

Because he has a continuous glucose monitor, he technically only has to check his blood sugar via finger poke twice per day. That is to calibrate the monitor.

However, the Casanovas will check Trey's blood sugar with strips eight times per day because he's so young.

"I don't want him to fall out of habit," Natalie Casanova said.

Plus, the monitor isn't always right, and a 20-point difference in blood sugar would affect the amount of insulin he receives, she said.

Trey has yearly labs drawn in Sioux Falls during an endocrinologist appointment, and the family travels to Sioux Falls every three months for checkup appointments.

The good news is that people are finally listening, Natalie Casanova said.

The family doesn't share its story for sympathy, she said.

"It's not that at all ... but so that people are realizing that there's a problem," she said.

There's one question his wife dislikes, Jordan Casanova said: "How's Trey doing?"

"I mean, how do I answer that?" she said. "I know people are just trying to be nice, but they don't see what goes on when his blood sugar is 400 or 50."

For a Type 1 kid Trey's age, 180 and under are "good" blood sugar readings, his mom said. The normal range of blood sugar is roughly 0 to 140, according to Stanford Children's Health.

Blood sugar affects mood, and behavior can be indicative. It's hard to grasp for people who don't experience it firsthand, she said.

A mother knows, though.

"Natalie can tell when he's 100 miles away," Jordan Casanova said.

But that doesn't mean more can't and shouldn't be done, especially for those less familiar with the disease.

Unlike height, weight, blood pressure, temperature and other vitals, doctors don't routinely test blood sugar.

"T1 is an epidemic and (it needs to be checked for) more often. ... The diagnosis is being missed and kids sent home are dying ... that's not acceptable," Natalie Casanova said. "I wish I was more powerful than I am. I wish I had the time and the energy to make that change because a simple finger poke at every well check ... not that it's going to save everyone, but it could really make a difference."

Follow @vlusk_aan on Twitter.

Reporter Elisa Sand contributed to this report.

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