Leah Jackson, of Coram, has type 1 diabetes, which means...

Leah Jackson, of Coram, has type 1 diabetes, which means her body produces no insulin, but she receives insulin through an automatic pump. Credit: Jessica Rotkiewicz

The price of life-saving insulin continues to surge as doctors on Long Island and beyond say they’re devoting increasingly more time to patients’ cost concerns.

Costs have skyrocketed by as much as 197 percent to more than 300 percent, depending on brand over the past 12 years, a variety of studies have shown. The medications control blood sugar by performing the job that can no longer be done by the pancreas, the organ that produces the hormone.

Soaring prices have in turn vaulted diabetes into a rarefied category – the nation’s most expensive chronic disease, according to a report in May from the American Diabetes Association.

“As a doctor I don’t see the situation getting better. It’s getting worse,” said Dr. Joshua Miller, an endocrinologist and director of diabetes care at Stony Brook University Hospital.

“When I am seeing patients I have to address issues of cost, and that shouldn’t have to be part of the conversation because it takes time away from talking to them about their diabetes. It’s really frustrating,” he said.

Despite several class-action lawsuits, charges of price collusion and a congressional hearing earlier this year on the cost crisis, there are no signs that insulin prices will decline anytime soon.

Critics have accused drug makers Eli Lilly, Novo Nordisk and Sanofi-Aventis of shadow pricing. When one company raises its price, the others follow suit. All three companies have denied the allegation.

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Although insulin has been declared an essential medication by the World Health Organization because it is life-sustaining, costs have put it out of reach for many who rely on it.

A decade ago, an average monthly supply of insulin ran from a low of $86 to $231 a month, depending on brand. Now, those costs can run anywhere from $730 to more than $1,000. Discount pharmacies, such as those at Walmart stores, offer insulin for as low as $25, but those older forms of insulin do not permit proper management of the disease, especially for patients with the form of diabetes known as type 1, Miller said. 

Pricing pressures have forced some of his patients to skip doses to make their monthly supply last longer. Others are rationing them by taking less, or using insulin prescribed to other family members.

Leah Jackson, a law student at Tuoro Law Center in Central Islip, who relies on parental health insurance coverage because she is younger than 26, said she reached a critical moment last year. Jackson was briefly without health insurance and her monthly insulin cost had hit $1,500.    

Leah Jackson, of Coram, has type 1 diabetes and receives...

Leah Jackson, of Coram, has type 1 diabetes and receives insulin through this automatic pump. Credit: Jessica Rotkiewicz

“At that point when I wasn’t insured last summer, there was no choice – that was an out-of-pocket cost,” said Jackson who has type 1 diabetes.

The high price tag was difficult to meet, but people with type 1 diabetes will die without insulin because their pancreas no longer produces the hormone.  

A key frustration for many patients, Jackson added, is that health insurance companies change patients’ insulin brands without consulting their doctors. The medications come in short- and long-acting forms to control blood sugar around the clock.

Unannounced changes often are in response to prices, but leave patients without much recourse, said Jackson, who grew up in Coram.

"It's tough when the insurance company has changed the brand. I have to appeal to the company and say that I do need this insulin," Jackson said of the more expensive medication.

Dr. Joshua Miller, director of Diabetes Care at Stony Brook...

Dr. Joshua Miller, director of Diabetes Care at Stony Brook University Hospital, is not only an endocrinologist but a patient who has type 1 diabetes. He believes his unique perspective affords a deep sense of empathy for those facing cost challenges. Credit: Ed Betz

Lucille Hughes, director of diabetes education at South Nassau Communities Hospital in Oceanside, said pricing pressures are causing some patients to take dangerous risks.

“Some patients aren’t filling their prescriptions,” Hughes said, and among others who do get prescriptions filled, they will take less than required to make the medicine last longer.

Still others, she added, have been dramatically limiting carbohydrates in their diets to nutritionally lower the amount of glucose in the blood, limiting the need for insulin.

“We hope there will be a remedy soon,” Hughes said, of price controls. More than 30 million people in the United States have diabetes, and 7.5 million of them need insulin. That figure includes all 1.5 million people diagnosed with type 1 and 6 million people with type 2, estimates from the American Diabetes Association show.

Type 1 is an autoimmune disease that occurs when a turncoat immune system destroys insulin-producing beta cells in the pancreas. The disorder usually arises in childhood, although not exclusively so. Jackson, for example, was diagnosed at age 18 after having been misdiagnosed in childhood as having type 2.

Type 2, usually diagnosed in adulthood, is characterized by what doctors call insulin resistance, which means the body produces some insulin, but the hormone doesn’t effectively enter cells to lower glucose. Most people with type 2 diabetes can control the disorder with medications that help their body better utilize the insulin they produce. Diet and exercise are also important in controlling the condition.  

Miller, meanwhile, not only is an endocrinologist but a patient who has type 1 diabetes. He believes his unique perspective affords a deep sense of empathy for those facing cost challenges. Higher insulin costs have affected many patients, including those who are well-insured, because of higher co-pays and deductibles, which add to out-of-pocket expenses.

“The public outcry is starting to reach the industry,” Miller said, noting that pharmaceutical companies have begun advertising their patient-assistance programs that provide insulin at lower cost.

DIABETES

Quick facts:

Diabetes is a condition in which the body's capacity to produce or utilize insulin is impaired.

TYPE 1

An autoimmune disease. That means insulin-producing cells in the pancreas have been destroyed by rogue immune system cells.

TYPE 2

Characterized by insulin resistance, which means the insulin that is produced is not effectively utilized. 

Of the 30 million people in the United States with type 1 and type 2 diabetes, 7.5 million require insulin, which has a nationwide cost of $15 billion annually.

Leading brands of insulin:

Humalog

Humulin

Lantus

Levemir

Novolin

Novolog

SymlinPen

Sources: Lucille Hughes, South Nassau Communities Hospital; American Diabetes Association

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