Skyrocketing Insulin Prices Costing Patients Food, Rent, Limbs, and Lives
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Skyrocketing Insulin Prices Costing Patients Food, Rent, Limbs, and Lives

High prices are forcing diabetes patients in the U.S. to choose between insulin and other basic needs

August 23, 2016

People are dying. Limbs are being amputated. Food and shelter are scarce.

This is not a war zone. Millions of diabetes patients around the United States are experiencing a health crisis due to massive increases in the price of insulin, which these patients need to live. They are being forced to choose between basic needs: food, rent, or vision? Working kidneys? Attached limbs?

Like EpiPen prices, prices for insulin have unaccountably risen over several years, though there is no shortage of the drug and insulin prices in other countries are low. Meanwhile, the companies involved in the insulin supply chain in the U.S. are blaming each other.

The Patient/Doctor Experience

There are tens of thousands of healthcare professionals who are engaged in what Lee Newspapers (LN) is calling "an intricate therapeutic ballet performed to protect the health, limbs and lives of the almost 30 million people" who live with the disease in the U.S. These professionals now have to weigh the cost of the essential drug against the ability of their patients to pay for it.

Dr. Justen Rudolph is a diabetes specialist at St. Vincent Healthcare in Billings, Montana. "My patients having trouble with their insulin availability range from teenagers to a 90-year-old man, and there's not a day that goes by when I'm not talking to a patient about the cost of their insulin," he says. "They try to spread out the insulin they have to make do, and that's not how you can control diabetes."

Such rationing practices are concerning to medical practitioners.

"Precision is needed to ensure the patient is getting the best type of insulin for their specific condition, in the right doses, at the right time to achieve the greatest benefit," said Dr. Irl Hirsch, professor of medicine in the Division of Metabolism, Endocrinology and Nutrition at the University of Washington in Seattle.

Dr. Mayer Davidson, professor of medicine at the Charles R. Drew University of Medicine and Science in Los Angeles has been tracking the price increases. According to his figures, the wholesale price increased by up to 62 percent from 2011 through 2013, then again by between 33 percent and 107 percent from 2013 through 2015.

"This borders on the unbelievable," Davidson said while describing a particular type of insulin which "in 2001 had the wholesale price of $45. By last year, the cost had skyrocketed to $1,447" for the same amount of insulin per month.

That's an increase of more than 3,115 percent.

The problem is compounded by the decreasing amounts that insurance companies are willing to pay for medications, said Susan Pierce, diabetes educator at Chestnut Hill Hospital in Philadelphia.

"People who paid $200 or less are now getting bills of $400, $500 and even more for the same amount of insulin. Meanwhile, most insurance is paying less for medications and the required co-pays are higher, so it is a double whammy that prevents the patient from getting the insulin to stay alive."

Diabetes is not a kind disease. It is "a leading cause of blindness, strokes, kidney failure, heart attacks, nerve pain and amputation of the feet and legs," says LN.

Dr. Hirsch characterized the price increases to the newspaper as "price gouging of a medication required for survival" and described the effects being experienced by patients.

"I had a patient tell me her insulin bill is suddenly costing her as much as her mortgage," he said.

Dr. Claresa Levetan, Chestnut Hill Hospital's chief of endocrinology, has patients in even more dire straits. "I have patients who tell me that they have to make a decision between food and insulin, and their rent and insulin. I mean, seriously, food, rent or insulin."

The Supply Chain

Insulin pricing, just like pricing of other medicines, is controlled by three parties: the manufacturers, the insurance companies, and the pharmacy benefit managers, the middlemen between the manufacturers and the insurers who negotiate the prices paid by the insurer.

Dr. Hirsch has harsh comments about manufacturers and benefit managers.

"Both the pharma company and the pharmacy benefit managers jack up the cost," he claimed. "We don't know what the benefit manager is paying for the insulin from the pharma company. It's backroom deals. You can call them rebates, you can call them kickbacks, you can call them bribes, but those are secret deals on which we don't have the details."

State regulators and congressional committees are being pressured by pharmacy trade associations to investigate the pricing practices of these benefit administrators. The associations are particularly concerned about a so-called "clawback fee" that the controllers demand pharmacies to impose on patients in addition to their copays.

Most practitioners are placing the blame for the skyrocketing costs on the nearly-total absence of regulation of benefit managers. The companies deny responsibility even though the U.S. is the only country experiencing the increases.

However, perhaps the pharmacy industry as a whole should not be blamed, said Certified Diabetes Educator Carla Cox of the Providence Medical Group. There are numerous programs for many people with low incomes and no insurance, and the industry also supports children at diabetes camps and professional conferences.

Blame on Top of Blame

According to Jennifer Leone Luddy, spokesperson for Express Scripts, a major pharmacy benefits company, patients are seeing increased insulin costs because the "drug makers continue to increase prices significantly each year, and there is no generic insulin available on the market."

Luddy added that it is Express's mission "to keep prescription medication affordable and accessible," and said that although the company tries to find the medications that are most cost effective, it is the company's clients—employers, health plans, and government agencies—that ultimately decide how much a patient will pay for a drug.

Some doctors are blaming benefit managers, said LN, who they feel are "playing musical chairs with the different brands of insulin they authorize." This endangers all diabetes patients, including those who can afford to buy insulin.

Dr. Loren Wissner Greene at New York University's Langone Medical Center is one such doctor. "I'm being told to make patients switch their insulin for no good reason except to make somebody more money," she said. "I just barely taught them that the orange pen is the fast-acting insulin and is to be taken with meals and the gray one is the slow-acting insulin to take at night. Now, suddenly, I have to switch them to a different brand to keep the pharmacy game-players happy."

Nearly all insulin in the world is controlled by three pharmaceutical companies: Eli Lilly of Indianapolis; Danish company Novo Nordisk, which claims to make half the insulin used by diabetics worldwide; and Sanofi of France, which says that it holds 18 percent of the insulin market.

Julie Herrick Williams, communication manager at Lilly, said that it is not the company that sets the price paid by the patient but wholesalers and pharmacies.

"The patient's insurer, the type of plan and the individual pharmacy all play a role in the price,'' she said. "Changes to the U.S. healthcare system are the primary driver for increased insulin cost for consumers. With the adoption of cost-sharing plans, like high-deductible health plans, more direct costs are shifting to the people who need treatments."

Pharmaceutical companies make tens of billions of dollars producing insulin. The three major companies are estimated to have made between $12 billion and $14 billion from insulin sales last year.

Meanwhile, Dr. Hirsch and other healthcare professionals are lobbying to end the drastic price increases. Both Dr. Hirsch and his younger brother are diabetics.

"The well-being of our diabetes patients must come before the profit-driven games being played over the price of the clear liquid that keeps them alive," he said.