Do we need do-it-yourself insulin?

For those of us with diabetes that is severe enough to require regular insulin injections, going without insulin is not a realistic option. In the United States, such people are at the mercy of the drug companies that make insulin, and they (or their insurance or government benefits, if they have any) have to pay whatever those companies charge.

A graph of insulin prices versus time gives a good imitation of an exponentially rising curve, increasing about 50 percent from 2014 to 2019. A vial of insulin can cost today as much as US$300, and as a result, many poorer diabetes patients are skipping doses and incurring complications from the disease such as infections and blindness.

For a drug whose inventor, Frederick Banting, refused to put his name on the patent because he thought it should belong to humanity, it looks like patients who need the drug to live are being gouged by Big Pharma.

An article in the May 25 issue of The New Yorker describes how some do-it-yourself-biology groups are trying to come up with an end run around this problem. In "The Rogue Experimenters," Margaret Talbot interviews people at a meeting of the Open Insulin Project in Baltimore, where PhDs in biochemistry mingled with volunteers who set up DNA labs in their apartments.

Their goal is to engineer a bacterium to manufacture insulin, and make it available at a much lower cost than the big three US manufacturers charge. But even if the rather rag-tag group of professionals and volunteers succeed, they face huge hurdles in the form of the Food and Drug Administration (FDA) approval process, which can cost millions of dollars. The big drug companies like it that way, because it means that nobody much smaller than them can even hope to compete.

When asked about the high price of insulin, drug manufacturers point to patented improvements they have made over the years. Each patent allows them to exclude competition, and while technically the US market is not a monopoly, the only three significant insulin manufacturers operate what looks to this outside observer like a cartel, successfully defending their practices against attempts by government to break up the cartel. But although one type of synthetic insulin introduced in 1996 has gone from $20 a unit to about $200 today, no one is claiming that it works ten times better than it used to.

A little historical perspective might help us see what is wrong here, and what might be done to fix it.

Much if not most of modern medicine can be traced to two sources with Christian roots: the tradition of charitable care, which gave birth to the modern hospital; and the tradition of scientific investigation, which led to the monumental achievements of medical science that makes medical care so effective today.

We sometimes forget how recently medicine has transformed itself from a sort of guesswork sideshow that only rich people could afford to a huge and largely effective enterprise that makes life better, or even just possible, for billions around the globe.

As late as the 1950s, it was fair to say that while most doctors and drug companies were not hurting for cash, most of the people involved in medical care were in it primarily for reasons of love rather than money. They wanted to help people, and a medical-related job or business did that. This attitude explains Banting's willingness in the 1920s to forego what might have been a highly profitable patent in the interests of benefiting humanity.

But once medical science adopted the Big Science style made possible in other fields by government funding, enterprising business people found that if you made a drug that people had to have in order to live, they would pay almost whatever you charged for it. And their patent lawyers found clever ways to prolong patents so as to exclude competition from this operation, which is a big part of how Big Pharma got where it is today.

Ah, but if all those profits hadn't been available to fund further research, would we have as many advanced drugs and medical technologies as we do today? There is no way to tell for sure, but one thing that is certain is that the drug companies now look at medical needs mainly with an eye toward profit, rather than asking about who is suffering and what can be done about it? This leads to situations such as "orphan drugs" that have small patient populations, have been around too long to patent, or are unprofitable for other reasons.

This problem has been a long time in the making, and I'm not about to solve in it one column. The biological do-it-yourself movement may lead to some changes, although if it gets to be a serious threat to Big Pharma, they can deploy herds of lawyers to manipulate the government regulatory system to put the DIYers out of business.

Government intervention of some kind may be helpful, but not simply by subsidizing whatever the drug companies charge, which is partly how we got here in the first place.

Humanly speaking, any institution that gets too powerful and begins to exploit the public, needs to have an equally powerful force applied to it to make it quit. That is why most of the solutions posed for this problem involve government intervention of one kind or another, because government (mainly meaning the federal government) is the only institution whose power and resources can compare with the multibillion-dollar multinational drug corporations.

There is some significance in the fact that although the US insulin market is comparatively small compared to the rest of the world, the drug companies make about half of their insulin profits from that market alone.

And while it is perhaps a remote and forlorn hope, another thing that would help is if everyone involved in medicine—drug companies, hospitals, doctors, and yes, even patients—would recall the roots of the discipline in the motivation of the kind of love that wishes the best for the beloved, including healing.

Millions of ordinary health-care workers still have that self-sacrificial love, as the Covid-19 crisis has shown us in recent months. But the marketplace is not a good place to look for love, so maybe we should start from a different place altogether in thinking about how to fix problems such as the high price of insulin.

This article has been republished with permission from the Engineering Ethics blog


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