People with type 1 and type 2 diabetes pay the price in more ways than one

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America’s getting plenty angry about the rising cost of insulin—and no wonder. Between 2002 and 2013, the average price for this life-saving, injectable drug used by nearly 10 million Americans with diabetes has tripled, according to the American Diabetes Association (ADA). “No one who relies on insulin should have to wonder if they’ll be able to afford it,” the ADA asserts in an online petition for its Stand Up for Affordable Insulin campaign.1

The ADA’s action doesn’t stand alone. In November (2016), Vermont senator and former contender for the Democratic presidential nomination Bernie Sanders fired off a letter calling on the US Justice Department and the Federal Trade Commission asking for an investigation of pharmaceutical makers Eli Lilly, Novo Nordisk and Sanofi for possibly colluding on insulin price increases.2

“Not only have these pharmaceutical companies raised insulin prices significantly—sometimes by double digits overnight—in many instances the prices have apparently increased in tandem,” noted the letter, co-signed by Rep. Elijah Cummings (D-MD). “We have…heard from our constituents that the life-saving insulin they need is increasingly unaffordable,” And in early January 2017, the New York law firm Bernstein Litowitz Berger & Grossmann sued Novo Nordisk on behalf of the Lehigh County (PA) Employees' Retirement System alleging the company “reported materially false and misleading earnings and forecasts” that were “inflated” by price fixing.

That’s not all. The highly anticipated US introduction (in 2016) of the generic “biosimilar insulin” called Basaglar was supposed to put a lower-priced type of insulin on the market but that's not what happened, according to Amy Hess-Fischl, MS, RD, LDN, BC-ADM, CDE, a member of the OnTrack Diabetes editorial advisory board.

"Basaglar (and Sanofi's version of Humalog, Admelog) were presumed to be cheaper options but they really are not," Hess-Fischl explains. "Lantus’ patent were expired and Lilly launched their version of glargine (the active ingredient in Lantus). Subsequently, Humalog’s patent also expired, allowing Sanofi to launch Admelog. Both allowed another revenue stream with a different drug. So each company capitalized on that to make more money, not to make a more affordable insulin."

So the fight to make insulin less expensive for people who rely on it continues. Consider these examples:

The cost of a vial of the short-acting insulin lispro (Humalog) increased 585% (from $35 to $234) between 2001 and 2015. By January of 2017, it reached $270, according to the drug-price website GoodRx.com.5 During the same time, the price of a vial of human insulin rose 555%, from $20 to $131, according to endocrinologist Irl B. Hirsch, MD, a professor of medicine at the University of Washington. And by January 2017, it hit $147 according to GoodRx.com.6

Between 1987 and 2014, the wholesale price of a 20-ml vial of Humulin U500—a concentrated form of long-acting insulin that more and more people with diabetes are using to control blood sugar—rose from $170 to $1,200, according to Truven Health Analytics.3 By January of 2017, the list price was $1,400.7

Many manufacturers, however, offer discounts and sponsor savings programs but they generally are only useful if you have insurance. GoodRx recently reported on the savings programs currently being offered for long-acting Basaglar insulin. Medicare/Medicaid patients are also generally left out of sponsored price-cutting programs. "Copay or savings cards cannot be used with Medicare/Medicaid," notes Fischl-Hess, "but can be used by people who are uninsured."

Here are links to other cost-saving initiatives:

Switching Insulin Brand, Rationing Insulin and Other Dangerous Practices

Thirty percent of the 29 million Americans with diabetes use insulin–alone or along with other medications–to keep blood glucose in check.4 While few pay the list price, rising costs are still a big problem for many. “I’m hearing from patients who are scrambling to switch insulin brands to save money, which can be very dangerous if you don’t do it carefully or choose something that doesn’t work well for you,” says Michelle Katz, LPN, MSN, a healthcare consumer advocate and author of the books Healthcare for Less and 101 Health Insurance Tips. “Anyone who’s uninsured has high health-insurance co-pays, or who has a high-deductible health plan is affected. Under the Affordable Care Act, you can buy health insurance with a low monthly premium, but you may have to pay the first $5,000-$6,000 in costs out of your own pocket—including the cost of insulin.”

Irl Hirsch, MD, a professor of medicine at the University of Washington, who has type 1 diabetes, notes that the sticker price for a 3-month supply of one type of basal insulin ranged from “$978 at the pharmacy closest to my home in Bellevue, Washington, whereas on Good-Rx.com it can be purchased for ‘‘only $880.” That’s more than some can spend, he says. “Some people have no choice but to ration their insulin or stop it completely,” Dr. Hirsch says. This leads to rising blood sugar levels and higher risk for complications including vision loss, kidney failure, and nerve damage, he says.

“We’ve heard anecdotally about more diabetic ketoacidosis (a life-threatening high blood sugar condition) in the United States in the past 12 months,” he says, “but inaccessibility to insulin due to costs is not new in this country.” In one 2011 Emory University study of 164 people hospitalized for diabetic ketoacidosis (a life-threatening high blood sugar problem), 68% had stopped using insulin—and one in four of those said they had stopped because they couldn’t afford it.

“Even people who think they have good health insurance can’t afford the copays,” Hirsch says. “I had a patient who called the other day, his copay this year for one vial is $150. He’s on an insulin pump and uses two vials a month—that’s $3,600 a year. A lot of people can’t pay that much—and we’re only talking about the insulin. In addition, you’ll have to buy test strips, syringes, and other supplies. And if you’re a type 2 who uses insulin, you may need other diabetes medications as well.”

What's Making Insulin Prices Soar?

Several factors are fueling the price hikes. Insulin makers have continually adjusted formulations, creating insulin “analogs” that are easier to use and less likely to trigger dangerous low blood sugar episodes—but that cost millions of dollars to develop, Johns Hopkins University researchers noted in a 2015 report in the New England Journal of Medicine.5 This practice, which the researchers call “evergreening,” keeps pricey brands under patent protection so other drug makers can’t copy formulas and offer lower-cost versions. That’s one reason there’s no low-cost “generic” insulin in the US. Another reason: Insulin is a biologic drug produced in living bacteria or yeast cells and is more difficult to copy into a generic form.

Basaglar's formula is equivalent to Lantus but as Hess-Fischl noted, Basaglar didn't end up providing a significantly lower-cost alternative. Plus, people with diabetes who prefer regular insulin are still coping with some sky-high medication bills.

People with diabetes told OnTrack that keeping up with ever-increasing costs is not easy. “My insulin has gone up and my insurance only kicks in after a $2,700 deductible,” Lee Ann Tincher told OnTrack via Facebook. “At over $240/vial plus pump supplies and additional meds required to avoid complications, how can we afford to do anything except treat this disease. Insulin was only $1.50/vial when I was diagnosed with Type 1 in 1969. It is a crime!”

The “cost is prohibitive,” Marilyn Ann Throckmorton told OnTrack on Facebook—especially for people on Medicare who’ve hit the “doughnut hole,” a coverage gap when they must pay more for brand-name drugs. “Insulin is 90 years old, and yet the cost continues to rise,” she wrote. “Last year my total cost for the FlexPen was $1,100 for a 3-month supply. This year it is $1,500. When I reach $2,600 I go into the doughnut hole and I have to pay 45% of the cost. We diabetics need help.”

If you'd like to join the growing fight against rising diabetes-related costs, visit the ADA's website to sign the "Stand Up for Affordable Insulin" online petition. ADA is calling for more transparency in pricing and requesting Congress to hold hearings on the issue.

Updated on: March 7, 2019

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