Insulin price hikes create burden for people with diabetes

November 10, 2016 GMT

The EpiPen isn’t the only medication that has become prohibitively expensive for many who need it.

The retail price of insulin has topped $200 per 10-milliliter vial, according to local sources.

More than 29 million Americans suffer from diabetes and need insulin, according to the American Diabetes Association, and there are no generic options available.

How much a patient pays for insulin depends on his or her medical needs and insurance coverage, said Dr. Joe Hoagbin, chief medical officer at CHI Health Mercy Hospital.

“Some people take a large amount of insulin at a time, and sometimes people just one to two units,” he said. “A vial can be $200 or more, when you pay full retail price.”

Two common types are $224 and $260 per vial, Hoagbin said.

“I can remember when a vial of insulin, in the old days, was $30, so we’re talking almost a (tenfold) increase for patients,” he said. “Sometimes, pharmacies will give people a little bit of a break, but it’s still expensive.”

If a Mercy patient needs financial assistance, the hospital will help patients enroll in a manufacturer’s assistance program, Hoagbin said, but the process requires a “very complicated” application.

Andrew Fauver, 28, of Omaha was diagnosed with Type 1 diabetes when he was 18. He had to attend a class on managing the disease and must see his physician every three months.

“You have to learn your body, and you have to learn how your body reacts to certain foods and to certain kinds of stress,” Fauver said. “Eleven years later, I’m still learning – I’m constantly learning about this disease every day.”

Fauver takes two to three vials a month of long-acting insulin and three to four vials a month of short-acting insulin. He thinks it would cost $450 a month, if he had to pay for it all.

“My insurance company made me switch the kind of (long-acting) insulin I take, because it was getting too expensive,” he said. “I don’t think people realize we need this medicine just to survive.”

Like Fauver, most people with Type 1 diabetes need two kinds of insulin – long-acting and short-acting, he said.

“If you’re not on a pump, you’re taking two kinds of insulin,” he said.

Patients who wear an insulin pump only need short-acting insulin, because their bodies get a constant supply, Fauver said.

Fauver stayed on his mother’s insurance until he was 26. He has been working as a self-employed personal trainer for the past eight years and is assistant coach of the Millard South High School junior varsity basketball team, so she has helped pay for his insurance.

“I am pretty fortunate that my mom still helps me with insurance and costs,” he said. “I just recently started back to college, so I can actually get a job where I have insurance.”

He is taking online classes through Peru State College to become a special education teacher.

Fauver, who is helping the JDRF increase public awareness of diabetes as part of National Diabetes Awareness Month, says there are many misconceptions about diabetes and those who suffer from the disease.

“There’s such a stigma that diabetics are overweight and lazy and don’t take care of themselves,” he said.

That’s certainly not the case with Fauver, who works out and follows a healthy diet.

“Ever since I got diagnosed, I’ve spent some time helping people,” he said.

Meanwhile, many insurance plans now carry higher deductibles and co-payments, said JoLynn Ahmann, pharmacist at the in-house pharmacy at All Care Health Center, 901 S. Sixth St. in Council Bluffs.

“Pharmacies are most often unable to waive co-pays, and, therefore, patients are required to pay nearly the full amount of cost of the medication,” she said. “Most diabetics require more than one vial of insulin per month, and, with each vial costing nearly $200 or more, the costs add up quickly. Therefore, some patients are left not being able to afford their insulin and even try going without it.”

If people with diabetes give up on getting insulin, the disease could damage their kidneys, nerves, eyes, heart and mental health, said Teresa Dowling, associate medical director and nurse practitioner at All Care. If they have Type 1 diabetes, they could end up in the hospital with ketoacidosis, which can be fatal.

Or, they could go into a diabetic coma and require intensive care for a period of time, Hoagbin said.

“They are very much at risk of having very adverse outcomes,” he said.

If they take a smaller amount to make it last longer, that, too, can be problematic, because insulin is only good for one or two months, Ahmann said.

“You can’t advise a patient to use an expired drug,” she said.

Even if a patient feels OK, there could be serious long-term damage to his or her body, Ahmann said.

Retired Pottawattamie County Deputy Dwayne Riche suffers from diabetes and takes two types of insulin, which his insurance covers.

“I’ve been insulin-dependent since I was 5,” he said. “If people don’t have insurance, I don’t know how they can afford diabetes.”

Riche has begun to experience deterioration of his vision from diabetes. He had surgery on his left eye a couple years ago and surgery on his right eye earlier this year.

As a federally qualified community health center, All Care Health Center receives a discount on most prescription medications from drug manufacturers, Ahmann said.

“The facility doesn’t have to give that discount on to the patients,” she said. “We choose to do that” based on financial need.

Iowa Medicaid covers the full cost of insulin, Ahmann said, so enrollees do not have to pay a co-payment. Those with Medicare D may have to pay the full cost until they meet a deductible.

“The other people with the same problem are the people that are on those marketplace plans,” she said. “Those plans, some of them, have like a $5,000 deductible.”

If a patient is on Medicare but does not have a drug plan, he or she would also have to pay the full cost, Ahmann said.

“We see a lot of Medicare patients that can’t afford their medications,” Dowling said, adding these patients don’t have Medicare Part D.

All Care offers a lower price to those who qualify for its sliding fee scale, Ahmann said. To be eligible, they must have incomes of 200 percent of the federal poverty level or less. For them, the co-pay for insulin is about $20.

“You still have that group that they don’t qualify for our sliding scale, but they still can’t afford insurance through the marketplace,” Dowling said. “There’s a big population out there that can’t afford insurance.”

Sometimes, All Care can provide medication from its sample cabinet, Dowling said. The samples are donated by hospices and hospitals and can only be given to Iowa residents, she said.

“A lot of patients rely on that for their medications” and call or stop in once or twice a month to check on availability, she said.

Besides insulin, there are many other expenses involved in managing diabetes: test strips, syringes, glucose tablets if a person’s blood sugar gets too low, alcohol and swabs and a glucagon shot (a life-saver if blood sugar is dangerously low), which must be replaced every year, Fauver said. He recently purchased a continuous glucose monitor that checks his blood sugar every five minutes.

“It’s just expenses on top of expenses to try to give ourselves a decent quality of life,” he said. “It shouldn’t be so expensive for people just to keep themselves alive.”