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.

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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.

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  • There is no “good “ or “bad” insulin. They all produce the same effect when doses correctly. The pharma industry has sold “long acting” and “short acting “ versions of the molecule to patients and doctors but there are plenty of studies showing that the outcomes of using insulin or its analogs are similar. The Big 3 use these molecules to argue that they deserve the ridiculous prices they demand. Meanwhile, even most analog insulins (short and long acting) are off patent (I.e. they have outlived their patent exclusivities). But the big 3 don’t give up on this $14 Billion market so easily. Sanofi has driven a bio similar from Merck out of the market and it is also blocking Biocon/Mylan who are engaged in a similar effort. Yes the pharma industry is very innovative especially when it comes to legal shenanigans blocking any competition that might give patients a fighting chance of obtaining insulin at a slightly lower price.

  • Insulin in the 60s isn’t the same as today. Furthermore, you can clearly see that you’re complaining that the BEST insulin costs a lot while normal insulin isn’t that costly. How do you think we come up with better insulin. That money you’re paying makes better drugs but hey. Keep whining about it.

  • It is nice that JDRF and Am Diabetes Assoc. pay lip service to reducing the price of insulin to patients. But they never take on the Big 3 directly because they take money from them. Their actions are always directed toward other “evil actors” like PBM’s, insurance companies, etc. It would be nice to see JDRF and ADA disavow donations from Big Pharma (whose greed is the root cause of this madness) and really work to lower prices for the benefit of patients

  • Just wanted to add that JDRF is currently working with the current administration in order to help resolve the issue with prices, which is apparently more of a function of these price “rebates” than the actual cost of the product, which the pharmaceutical companies are being forced to increase in order to pay what are essentially “kickbacks”. Therefore, expect this law to come out soon which will deem these rebates as ILLEGAL kickbacks. This SHOULD help to resolve the entire problem. Please check out http://www.jdrf.org for more information.

  • I think that it is a shame that people are dying each day for lack of being able to purchase their medications. Until we all rise up and tell our Congress and Senate that we are tired of being overcharged for medications in the United States the can be purchased for a fraction of the costs in other countries. But to accomplish that, we have to get the Big Pharmaceutical companies out of the pockets of our elected officials. I have type 2 diabetes and when my wife retires and all we have id Medicare for our insurance, I don’t knows how we will be able to afford my medications as I also have Multiple Sclerosis and have to be on many medications that most of the part D suppliers don’t cover. I may have to look at trying to move to another country to be able to afford my medications so I can stay alive. It just a shame that our Government will send billions of dollars overseas to help other countries while people here at home die from lack of being able to afford their medications. It’s time to stand up America and write or email your Congressmen and Senators asking them to find out what’s going on with our pharmaceutical companies here in the United States

  • I choose to return to France when I retired because I would have been uninsured for a period of one year in the US and therefore unable to buy my meds. So Far I have bought tresiba for 63 euros (a little over 70 dollars) for three 200 ml pens . My pentel needles are 15 euros for the same box I paid 67.50 in the US . Something needs to be done about the high cost of prescriptions medication in the US. I should not have to leave my grandchildren, the home I built over 40 years and all my friends because I cannot buy my meds any other ways. In a short while <i will be able to be Under the national health plan in France and all my diabetic supplies will be paid for. I am Lucky because I have this choice as difficult it is to leave everything. As an ER Tech in the state of washington for the last 18 years I have seen so many people in the brinks of death because they couldn t afford their meds. Unreal in such a rich country.

  • My insulin went from 25dollers to 191dollars over bite now I
    I pay 200dollars for 2 pins of victoza for 30days why is that I’m paying a total of 362dollars for insulin with insurance

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