by Patricia J. Williams
Published in The Nation Magazine, September 21, 2017, https://www.thenation.com/article/how-much-is-your-health-worth-to-you/
“I’m a capitalist,” said Martin Shkreli in an rare, insightful moment of self-diagnosis. Financier and pharmaceutical maker Shkreli was being interrogated about the hermeneutics of avarice: Having obtained the distribution rights to Daraprim (a life-saving drug used to treat toxoplasmosis), he had recently raised the price from $13 to $750 per dose.
The public outcry that ensued has been to little general avail. That is because, however unpleasant a personality Shkreli may be, he is hardly alone. As The New York Times reported recently, the cost of new medicines, particularly those for cancers or for rare diseases, is “whopping.” For all the public exuberance about precision medicine, individualized therapies—especially gene therapies—will not come cheap. Some already cost anywhere from hundreds of thousands of dollars to millions per patient. Yet these prices do not generally reflect the true costs of research and development, which are “small relative to the revenues,” according to Patricia Danzon, an economist at the Wharton School. In fact, a new study published in JAMA Internal Medicine on September 11, 2017, looked at 10 cancer drugs and found that there was a more than sevenfold return on investment.
Rather, pricing is profit-motivated; and, since many gene therapies can cure or regenerate with the administration of a single injection or dose, drug companies are arguing that “the prices ought to reflect the value of a curative treatment to the patient.” The maker of one drug to treat blindness argues that retaining one’s eyesight is worth a lot to the average person, therefore “[w]e should be compensated for generating that value.”
“That value,” however, is a purely econometric calculation, based on finance-industry metrics of what the market will bear. It is not a calculation well-suited for the distribution of medicine or other public goods. What, after all would any of us be willing to pay for water in order to survive if a monopoly had warehoused all the water in the world? Would it make sense to accord to one company global distribution rights to all water supplies, then allow that company to manipulate the price so whimsically that thirsty creatures would have to mortgage their homes or die? Yet that is exactly what drug manufacturers are legally permitted to do. It is exactly what Shkreli has done with Daraprim (a drug that was developed in the 1950s, so his company’s overnight price inflation reflects no research or development costs, just purest greed.)
Still, there are limits to capitalist exchange—the law generally places limits on sale of that which normative culture values as “inalienable” and necessary for bodily integrity. Just so, Martin Shkreli has been locked up not for pricing drugs but for pricing Hillary Clinton’s hair and DNA in a way that rendered the intimacies of her person subject to him and the highest bidder. “On HRC’s book tour,” he posted, “try and grab a hair from her. I must confirm the sequences I have. $5000 per hair obtained from Hillary Clinton.” All the elements of a good capitalist contract were there: offer, acceptance, value to be exchanged. The problem, of course, was that to execute the contract, delivery invited an unwanted touching otherwise known as assault.
Free enterprise has its boundaries in other words. Contract works best when the thing exchanged is a thing—inanimate, impersonal, and fungible. When the object of contract is a human being or a body part or involves overcoming the will of a non-consensual third party, the transaction may verge on usury, extortion, bribery, or other crime. This is because the frame of contract treats what comes within its purview as a thing to be utilized by others; this contrasts sharply with the notion of a human life as beyond price.
This is a recurring ethical issue in medical and scientific research—Rebecca Skloot’s book The Immortal Cells of Henrietta Lacks is perhaps the most familiar recent exploration of the dilemma: Lacks was a woman whose extracted cancer cells generated billions, perhaps even trillions, of dollars in research profits, yet whose descendants couldn’t afford health insurance. The 1978 movie Coma explored the vexed market for transplantable organs—one that has often awarded a higher price to parts of human bodies than to the whole. And we have the unfortunate reality of medical tourism, in which there are competitive black and grey markets for body parts, but always favoring the wealthy; Shkreli’s wealth-favoring market for Daraprim is akin to the distributive-justice issues presented when a poor person in India who wants to survive poverty sells a kidney to a wealthy person in Saudi Arabia who to wants to survive renal failure. It is no easy bargain.
There is a similar concern about raw utilitarianism in many end-of-life decisions, where life support can sustain certain functions despite so-called “brain death”—but where there are research interests hovering in the wings that seek value for experimental purposes but proffer no possible curative power. This was the case with Charlie Gard, a British child who developed a completely debilitating mitochondrial disease. He could not move, he was deaf and blind, and his brain had deteriorated to the extent that there was no hope of ever gaining any significant cognitive function. Furthermore, there was unanimous agreement among all his doctors about that diagnosis. Britain’s High Court ruled that a proposed experimental treatment—untested in animals or humans—that his parents wanted to deploy was not in his best interests because it was unlikely to be at all curative, and that it was likely that Charlie might still be sensate enough to experience pain and suffering from continued intrusive procedures.
In American media discussions of the Gard case, however, there was a worrisome privileging of the loving, grief-stricken parental desire to treat this child with any and all options, no matter how grim the reality; it was as though their intense emotional state were the only ethical metric; and could miraculously resurrect Charlie, or magically override scientific consensus. To take this back to pricing schemes: how much would parents in such an understandably passionate state be willing to pay for anything that promised not actual help but just a modicum of hope. At what point does accommodating that hope turn into pandering or extortion?
In an age of techno-optimism, some end-of-life discussions wrap the deploy of human experimentation in the altruistic language of future discovery—certainly not a bad thing—but with little straightforward address of the sometimes aggressive utilitarianism undergirding research incentive structures. The ethics of “using” bodies that are beyond any hope of resuscitation as fields for experimentation is not a simple one. But, at least as popularly framed, this debate is blurring all sorts of difficult categories: It avoids the hard questions of whether we should be treating an indisputably dying body as though it were either already a corpse or as though it were a mine from which future (but not present) value may be squeezed.
In his new book, Experiments in Democracy: Human Embryo Research and the Politics of Bioethics, ethicist J. Benjamin Hurlbut observes that we live in a time when there are “new ambiguities at the edges of life.” In a time of unprecedented scientific revolution—and “an ever-increasing need for bodies in biomedical research”—both life and death are “rendered biologically, juridically and morally uncertain.”
To return to Martin Shkreli, perhaps his shameless push at the bounds of all decency provides an opportunity for serious reflection after all. Should a sick person’s vulnerability and desperation for a cure be measured exactly the same as consumer demand for luxury products, like a designer suit or a private helicopter? In other words, is “consumer choice” really the same as patient need? How much is it worth to you? is a Solomonic inquiry well beyond the dignitary capacities of cash exchange. Harvard Medical School Professor Aaron Kesselheim observes: “We don’t pay the fire department that way…. When the fire department shows up at a burning house, they don’t ask, ‘How much is it worth to you to put out the fire?’”
Ultimately this is a question of governance of notions of reciprocity, of regulation, and of law. It is also about sometimes clashing valuations of the human body, if through two competing lenses: that of a market premised on profit motive, and that of a citizenry’s interest in fair and equitable access to public health.
For those interested in reading more about this general topic, here are two good resources: “The Precision Medicine Nation,” by Maya Sabatello and Paul S. Appelbaum, in the the July-August 2017 issue of The Hastings Center Report; and The Ethics of Invention: Technology and The Human Future, by Sheila Jasanoff, from W.W. Norton & Company.