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I have spent the last 5 years of my life as a journalist writing about the irrational costs and prices across the US health care system. But if there is 1 fact that should cause national embarrassment it is the high price tag we affix to living with type 1 diabetes.
The medicinal and technological advances of the last century have turned type 1 diabetes from a rapidly fatal disease into a treatable illness. But doing so takes discipline and care—as well as increasingly expensive technology and medicine—that is far more expensive in the United States than elsewhere.
That is because people with type 1 diabetes are both beneficiaries and pawns in the business ventures of drug makers, device manufacturers, and insurers, and sometimes these companies seem willing to sacrifice a pawn or 2 for profits. Today people with type 1 diabetes are again at an increased risk of becoming ill and even dying prematurely because of the price.
Between 2007 and 2017, the average wholesale price of 4 of the most popular insulins has more than tripled in price.1 Between 2010 and 2015, the monthly wholesale price of Humulin, the most popular insulin, rose to nearly $1100, up from $258 for the average patient.
In this issue of JAMA Internal Medicine, Herkert et al2 report the results of a survey on insulin underuse that was associated with costs that was administered at the Yale Diabetes Center. Of 199 patients who completed the survey (57% response rate), 51 (25.5%) reported cost-related underuse and were 3 times more likely to have poor glycemic control.
As a journalist, I hear wrenching patient stories, such as that of a restaurant manager who died shortly after turning age 26 years and going off his mother’s insurance. The price tag to treat his diabetes was $1300 a month, which was mostly for insulin. He died of diabetic ketoacidosis 3 days before his payday. An empty insulin pen was found in his apartment.3
A student at DePauw University with type 1 diabetes was losing weight, fatigued, and doing poorly in school. It was only after a coach, alarmed, notified his parents that they discovered he had been skimping on his insulin to save money.1
Such tragedies and tragedies in the making are explained by Herkert et al2; to save money, 25% of people are using less insulin than prescribed. What is more alarming is that a third of those did not tell their physician (or, presumably, their parents) that they were taking the risk.
As drug costs have generally increased in the United States, we know that many patients are skimping on medicines, taking less than prescribed, and cutting pills in half to make every fill last longer. This is terrible, but for many diseases, it is not catastrophic. If you use less of your asthma inhaler you will be somewhat short of breath. If you skimp a bit on sleeping medicines or even blood pressure pills, you will have a chance to self-correct. But skimping on insulin can be rapidly deadly in people whose bodies make none of their own and can result in a life-threatening metabolic disturbance.
It can also hasten disability (eg, blindness and kidney failure) and early death. Thanks to tight glucose control and more precise insulin dosing, researchers estimated in 2012 that children with diabetes born between 1965 and 1980 were living 15 years longer than those born between 1950 and 1965.4
Will that 15-year gain now be erased because of the price? It is important to consider that this is typically a disease that starts in childhood, meaning that people with diabetes must traverse their 20s with the illness, a decade during which their earnings are low and Americans are likely to be uninsured or underinsured.
Frederick Banting and colleagues, who discovered and isolated insulin in the early 1920s, licensed the patent for $1, so the blame is not with them.5 Who then is to blame for the price inflation?
The for-profit drug and device makers who sell insulins and insulin delivery devices have not followed the example of Banting et al. The have increased the price of their products year after year because, simply, they can. They have spent millions filing lawsuits that successfully keep competitors off of the US market. A biosimilar of Sanofi’s popular insulin Lantus was approved for use in the European Union in 2014 but was initially delayed for 2 more years by a lawsuit in the United States.6 Now that the biosimilar product, Basaglar, has finally hit the market, its price is only minimally lower than the original brand.7 The same insulin pen that retails for $140 in the United States costs less than $15 in Germany and Canada.8
The US insurance system—private and public—does not cut people with chronic disease a break but instead tends to penalize them. People with type 1 diabetes are people who drew a short straw in the disease lottery. Most other developed countries have concluded that their citizens should therefore not be subject to copays or high deductibles. “If you have a chronic disease, you shouldn’t be burdened by the cost,” York F. Zöllner, a professor of health economics at Hamburg University of Applied Sciences, told me in an interview for the New York Times before explaining the German approach, in which out-of-pocket contributions for insulin are less than $100 per year.9 Until very recently, the disease foundations (JDRF and the American Diabetes Association among them), as well as many diabetes patient groups, did not protest much as the prices rose, in part likely because so many receive funding from pharmaceutical companies.
Extreme prices can lead to extreme solutions. A 29-year-old student in Missouri with diabetes whom I interviewed for my book10 told me that she would only consider doctoral programs outside of the United States. “My one goal in life has been to move to Europe so I don’t have to pay these staggering prices just to survive,” she said.
But others—that 25%—will quietly skimp on their insulin, taking less than they need but more, perhaps, than they can really afford. Some of them will die.
Corresponding Author: Elisabeth Rosenthal, MD, Kaiser Health News, 1330 G St NW, Washington, DC 20009 (email@example.com).
Published Online: December 3, 2018. doi:10.1001/jamainternmed.2018.5007
Conflict of Interest Disclosures: Dr Rosenthal is the author of An American Sickness: How Healthcare Became Big Business and How You Can Take it Back.
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Rosenthal E. When High Prices Mean Needless Death. JAMA Intern Med. Published online December 03, 2018. doi:10.1001/jamainternmed.2018.5007
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