More than half a million Hoosiers have been diagnosed with diabetes, and many of them rely on insulin to live healthy lives. But patients say the skyrocketing price of the medicine ‒ which more than doubled from 2002 to 2013 ‒ is squeezing them to the point of outrage.
The frustration bubbled over at a rally in front of Eli Lilly headquarters in downtown Indianapolis Saturday. Protestors held signs reading “Insulin for All” and “Insulin = Life.” The protest of a few dozen people comprised what organizers believe is the first demonstration of its kind.
Insulin’s rapidly-rising cost ‒ and lack of an affordable, generic option ‒ is putting people’s health at risk, protestors say, and making them a slave to the price of the vital hormone. Mike Hoskins, a Type 1 diabetic, said he has good health insurance, but still goes without insulin sometimes to save money.
“I don’t use it as much,” he said, “Sometimes, I adjust what I’m eating or my routine so I don’t have to spend as much on insulin.”
Horror stories abound of diabetics skimping on injections ‒ or even intentionally slipping into a coma to receive doses of insulin inside the ER.
Some diabetics can’t function without insulin, and in some cases, not taking enough can be life-threateningly dangerous.
The Indianapolis-based Lilly was the first company to mass-produce insulin in the 1980s. The company is now one of three manufacturers, along with the European companies Sanofi and Novo Nordisk, that dominate the market for the hormone. The trio is now facing a class-action lawsuit accusing them of price-fixing.
According to the lawsuit, the list price of Lilly’s drug, called Humalog, has doubled in the past five years. In the mid-‘90s, when the drug was first launched, it cost $21 a vial. Now, list price for that same amount is $274.
The other two companies have similarly raised their prices (and in such lockstep that critics say it is more than coincidence).
Usually, when a drug has been on the market for decades, a cheap generic will become available, making it more accessible. No such generic exists for diabetics, thanks to insulin’s complicated biology. It’s not technically a drug, it’s a substance called a biologic, made from living cells, and re-creating it is more difficult.
Insulin isn’t a static medicine, either. Companies continue to tweak their formulas, extending their patents’ lifespans.
In response to the increasing outrage over insulin pricing, Lilly, along with pharmacy middleman Express Scripts, has introduced a program to make the hormone more accessible, offering discounts to patients who buy the drug through a third party website called Blink Health.
But the 40 percent discount only applies to people paying full price for three of Lilly’s insulin products, including Humalog. That’s people without insurance or in high-deductible health plans.
Protestor Angela Lautner found out she wasn’t eligible for several patient-assistance plans when she lost her job.
“I was denied every single one of them, including Eli Lilly’s patient-assistance program,” said Lautner.
Last year, Lilly defended its prices, saying that thanks to rebate systems, the “real” price patients pay hasn’t gone up since 2009 — middlemen called pharmacy benefit managers absorb the “list” price increases.
Hoskins said he thinks there are problems at every level, from the pharmacy benefit managers, to the wholesalers, to government policies.
“At the end of the day it’s too complicated for people to understand, and it really doesn’t go anywhere, and it’s a huge problem,” he said.
Lautner understands the health care system is complicated but thinks ultimately the price tag is just too much.
“I honestly don’t think my insurance company should have to pay the $1,400 that Walgreens put on my receipt last week for a month of insulin,” said Lautner.
In an email, a Lilly spokesman said the company has been an active participant in the insulin access dialogue for a long time, and we will continue to listen to patients.
This story was produced by a partnership between Indiana Public Broadcasting and Side Effects Public Media, a reporting collaborative focused on public health.