Paying the price for insulin

The debate about drug costs can be hard to follow because it is both broad and deep. Between patients not being able to afford their medication, the role of “middlemen” (pharmacy benefit managers), and lawyers filing class-action lawsuits, the topic is complex and can be emotional for many. I’d like to put it into perspective with insulin, a lifesaving drug used by most of my patients — and millions of Americans — that is a perfect case study of the drug pricing issue.

My patient, Jeanne (not her real name) was almost embarrassed to mention that her insulin cost $300 for a single vial that lasts about five days. That’s more than $21,000 a year. Did I have any ideas that might help? I did, and directed Jeanne and her husband to places where they could buy insulin at a discount. Even then, it would cost $1,800 each year but it would be a slower insulin that isn’t quite as good as what she was used to.

This scenario must have Canadians Frederick Banting and Charles Best spinning in their graves. They discovered insulin — one of the most important discoveries of the past century — in 1921 and sold the original patent to the University of Toronto for $1, believing that a drug this important should always be available and affordable to individuals who needed it.

That ideal got lost along the way. Accounting for inflation, a vial of insulin that cost $1 in 1967 should cost $16.43 today — not the $300 it cost my patient. To be fair, the quality of insulin is better today, but not by nearly twentyfold.

Many of my patients struggle to pay for insulin. Some of them don’t use the full dose each day so they can make it last the month until insurance covers it again. The high cost has been especially onerous for people without health insurance, those with high deductibles, or those relying on Medicare who reach the donut hole — or the yearly coverage cap — on a given drug. It’s even affecting many of my patients who have commercial insurance, because of the high copayments.

Without decisive action, this crisis is likely to worsen quickly.

The number of Americans who use insulin (I’m one of them), currently estimated at about 7.4 million, is growing rapidly. They are struggling to understand what mechanisms, beyond greed, could have pushed the cost of insulin to equal or surpass the cost of a mortgage. They feel disenfranchised, lacking a voice among health care policymakers who claim to be laser-focused on improving health outcomes for all and reining in drug costs.

The status quo reflects a society in which those who sell pharmaceuticals like insulin are accustomed to charge whatever price the market will bear — and buyers must pay it because there isn’t an alternative and without it they would die.

Other developed nations do not allow this. Outside of the U.S., insulin prices are negotiated by the government, not by private payers as happens here. Perhaps the most dramatic example is that a box of five pens of Tresiba, one of the newer insulins, has a retail price of about $500 in the U.S., while in Spain that same box of pens is 5 Euros (about $6).

The reason for the discrepancy is simple: No real price controls exist in the U.S., as they do in almost every other developed nation.

Companies in the drug channel — manufacturers, wholesalers, pharmacy benefit managers, and chain pharmacies — have increased their revenue streams by passing costs to patients. The drug makers and middlemen have received little to no scrutiny until recently.

Two years ago, Sen. Bernie Sanders (I-Vt.) and Rep. Elijah Cummings (D-Md.) stepped up pressure to investigate drug makers for potential price collusion on insulin; the Department of Justice is now investigating one of the middlemen. Numerous class-action lawsuits about price fixing were filed last year. Two other lawmakers, Reps. Diana DeGette (D-Colo.) and Tom Reed (R-N.Y.), both parents of children with type 1 diabetes, have teamed up to focus on drug prices. And at least five states, including my home state of Washington, have begun investigating companies that make insulin.

Dr. William T. Cefalu, the chief scientific, medical, and mission officer for the American Diabetes Association, recently testified before the U.S. Senate Special Committee on Aging that the high cost of insulin challenges any reasonable explanation — and that uninsured and underinsured patients are subsidizing the system. The association released these and other findings in a white paper.

I hope these efforts yield details that explain the current untenable circumstances for people who need insulin to stay alive and find a fix to halt the profiteering taking place at their expense.

The question is not whether it’s possible to make insulin affordable again. Instead, we should ask: How quickly can we change this unsustainable trend?

Insulin is not a concierge drug to be used only by those who can afford it. Affordable access to it should be a right, not a privilege, in the United States.

Irl Hirsch, M.D., who was diagnosed with type 1 diabetes at age 6, is a diabetes expert and professor of medicine at the University of Washington School of Medicine. He reports receiving a research grant from Medtronic Diabetes and consults for Abbott Diabetes Care, Roche, Bigfoot, and Becton Dickinson.