T

he 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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  • The US decided long ago that the way to reduce cost increases in health care is to financially punish people who get sick. That will show them! Next time, don’t choose to get diabetes or breast cancer or heart disease.

  • Having been a T1D since 1962, I have seen the un-explainable rise of Insulin prices. Yes, the potency has increased, the refinement better, but all in all we are getting taken advantage of. I have bought insulin (Humalog U100) all over the world for around $23. On a visit 3 months ago to refill my prescription for Lantus (pens) here in the US, I found out from my pharmacist that my insurance company (United Health Care) “didn’t cover my Lantus any more.” No prior warning, no way to adjust to a new insulin and after 3 months (how many people have a emergency 3 month supply of insulin?) of wrangling my doctor and United Health Care/Optum Rx with no results, I gave up on them. Just like that they pulled the rug out from under me, I’m getting less but no discount on my health insurance premiums and the public is stuck between the Insurance Companies, PBMs and Manufacturers with our wallets in their hands and our necks in a noose, health wise.

  • My 62 year old brother died yesterday because his insurance company was fussing and delaying his insulin prescription because of the price increase. Who can we blame his murder on? The drug companies or insurance companies — or both?

  • This is a very important issue. I would like to add that it’s possible to get cheap insulin without a prescription from Walmart – just go to the pharmacy and ask for Novolin R. It costs $24.88.

    Also it is possible for those with T2D to reduce their reliance on insulin by increasing their insulin sensitivity, through things like diet, exercise, and fasting. Even intermittent fasting and/or the ketogenic diet can help. Yes, these interventions are unlikely to help those with T1D.

    So again, this is a massively important issue – the profiteering on these drugs in the US is unconscionable – but I think there are some more alternatives available than the article suggests. Regardless, though, we need to reform the healthcare and pharmaceutical industries in the US. It’s important to incentivize innovation by allowing for profit, but the incentives garnished to pharma execs have become grossly inflated and drug development has stagnated.

  • With regard to the “white Paper” by Cefalu of the ADA. This treatise lays the blame for high insulin prices at the feet of Pharmaceutical Benefits Managers. While they provide a convenient scapegoat for high prices they are only a bit player. The real drivers for high insulin prices are the pharma companies themselves. But I understand the reluctance of the ADA to call out Lilly, Novo and Sanofi since ADA takes generous contributions from these companies. We at Fair Access Medicines believe that the best way to reduce prices is to increase competition. Our mission is to manufacture insulin and provide it at a fair price well below those charged by big pharma.

  • Author, you have contradicted yourself. You say: “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.” Then you go on to say: ” because there isn’t an alternative and without it they would die.” Just because the alternative isn’t the best in class, doesn’t mean it isn’t an alternative…
    Try not get caught up in this hype.

    Insulin is relatively cheap compared to other autoimmune drugs. Have you looked at the price of MS drugs?

    • Just because other drugs are priced ridiculously doesn’t mean all drugs need to be so.

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