High insulin costs have diabetes patients, doctors scrambling for answers

When his type 1 diabetes patients can't keep up with the high cost of insulin, Mark Schutta half-jokingly offers a radical solution: Buy an off-season ticket to France.

On a recent trip to the country, Schutta visited a small-town pharmacy to price several types of insulin and found that they cost one-fifth or one-sixth the U.S. price. So now the director of the Rodebaugh Center for Diabetes at Penn wryly advises patients to head to Europe to purchase a year's supply and bring it home.

Federal authorities, who frown on people carrying large amounts of foreign drugs into the county, may not agree. But the rising cost of insulin and other supplies required to manage diabetes is such a huge issue that Schutta's suggestion could sound like a great idea to many people.

About 1.25 million Americans have type 1 diabetes, and depend on insulin injections to live. Many of the 29 million U.S. patients with type 2 diabetes, whose bodies still produce some insulin, also rely on the medication — which is just the start of their expenses.

"Americans with type 1 diabetes are getting taken to the cleaners," Schutta said, comparing the exorbitant costs of insulin in the U.S. to lower prices in Canada and other foreign countries. "The prices are out of reach."

"You already have the bad luck to have this disease," Schutta said. "Why should you have to pay $5,000 or more for a drug that you must have to live? It seems unfair. Why aren't the citizens of Canada, the United Kingdom, Spain, France, and Japan paying those costs?"

One answer: Unlike many countries, the U.S. doesn't limit what drug companies can charge for medicine. Between 2002 and 2013, the price of insulin rose by 197 percent, from $4.34 per milliliter to $12.92 per milliliter, according to a 2016 study.

"Patients are paying thousands of dollars a year for human insulin analogs," Schutta said. "These drugs have been around for 20 years, but the pharmaceutical companies, in a way that seems to be collusion, are driving the prices up." At the same time, he notes, more people than ever need insulin, "so demand is also going up."

>>READ MORE: 10 ways to save money on diabetes care — and get healthier in the process

"It's quite clear that insulin pricing is a big issue in this country," said Ajay Rao, an assistant professor of medicine at Temple. "Many efforts to reduce costs are ongoing, with the lead effort from the American Diabetes Association, who are trying to work with industry people to cut down costs on the patient level."

For now, Rao says, it's worth shopping around for insulin prices, because sometimes copays may be slightly different. He also notes that for low-income areas there can be government assistance that provides as much as a 50 percent discount.

Meanwhile, Michelle Sonsino, 35, a communications specialist who has had type 1 diabetes since she was 9, struggles with out-of-pocket costs for insulin and diabetic supplies that run more than $5,000 a  year.

Recently, for example, Sonsino's share of her insulin costs jumped from $50 to $75 dollars a month. Add in these expenses: $50 for blood glucose test strips; $100 a month for sensors for her continuous glucose monitor (CGM), which alerts her if she has high or low sugars; about $200 every two years for a new CGM receiver; about $150 every six months for a new CGM transmitter; $50 for syringes as needed; $100 for a glucagon emergency kit; $30 for her primary doctor per visit (about three times a year); and $50 a  specialist (she sees at least eight to 10 specialists a year for complications from diabetes, including problems with her stomach, kidneys, and eyes). In addition, she wears an insulin pump to administer precise doses in order to keep her sugars as stable as possible. The pump needs to be replaced every three to five years and costs her from $500 to $2,500 depending on whether there is a warranty or trade-in deal available. Plus, there is the cost of insulin pump pods, about $100 per month.

To save money, the Philadelphia mother is taking a break from using her CGM, though she knows doing so could be compromising her health.

"It's wonderful," she said of the technology. "But the costs of the sensors [which each last about 10 days] add up."

Doctors hope a choice like that won't always be needed. "I think that as CGMs become the gold standard of care, we're going to have less of a problem when it comes to coverage," Rao said. Medicare currently covers Dexcom CGMs and the Abbott Freestyle Libre System and has recently updated its coverage to include mobile smartphone apps that work concurrently with the Dexcom systems. Often, Medicare coverage influences private insurers to follow suit.

Insulin manufacturer Eli Lilly attributes the rise in out-of-pocket costs to the fact that more people have high-deductible health insurance plans as employers push a greater share of costs onto workers. The company acknowledges that the list price of Humalog, a fast-acting insulin, has risen, but insists it is getting less for it than it did a decade ago, on average, due to discounts and rebates.

"A permanent solution will require leadership and cooperation across many stakeholders," the company said in a statement, "including manufacturers, payers and policymakers, because the answer itself isn't simple."

Others note, however, that drug companies are doing far better than patients. A 2017 University of Michigan paper published in Current Diabetes Reports noted that the costs of insulin "have become a barrier to diabetes treatment."

Ultimately, the researchers recommend "policy interventions such as more stringent requirements for patent exclusivity, greater transparency in medication pricing, greater opportunities for price negotiation, and outcomes-based pricing models" to control costs.

Schutta is far more blunt.

"The cost of manufacturing insulin is probably less that it was 20 years ago, but when pharmaceutical companies do an analysis of why costs are so high, they never tell you their cost for the drug and what the costs are going out the door," he said. "The pharmaceutical industry is selling Americans and physicians on the idea that they have to charge higher prices here because it funded research and development, but the truth of the matter is that they spend more money on marketing than R&D."

Alternatives to brand-name insulin are few. Sonsino has considered a cheaper insulin sold at Walmart. But after a quarter-century with the condition, she has found that "if you find an insulin that works well for you, you might not make out as well on a different kind." Schutta notes that Walmart insulin may be adequate for type 2 diabetics. But brand name human insulin analogs – synthetics designed to mimic the action of naturally released insulin —  are physiologically better for type 1's, in part because they are associated with less hypoglycemia (low blood sugars).

"I talk to my primary doctor all the time about the costs of health care and the whole industry," Sonsino said. "I don't have any answers; I don't know what can be done to make this disease more affordable. Seventy-five dollars for insulin a month to keep you alive is crazy. Plus, I know a lot of people who pay more than that who don't have a two-person income. Not to mention the hours and hours on the phone fighting with someone over getting your supplies."

Meanwhile, other priorities go by the wayside. "My money goes into a diabetes fund, not for college for my kid, or vacations, or new shoes. I'm always thinking about diabetes," Sonsino admits. "I'm always stressing about the money."

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