But what this system misses is that noncompliance isn’t always the result of a patient being unwilling to or uninterested in following directions. A patient who is not taking medication properly, for instance, “may have forgotten the doctor’s instructions,” or patients might not follow the recommended diets because they “can’t afford to buy additional food,” explains Sue Edwards of the Center for Ethics in Washington, DC. In still other situations, the problem is the expense of medications and checkups for those with no insurance or steady work. According to Bennett’s medical records, he had missed follow-up appointments and didn’t take his prescribed medication consistently after his valve implant 10 years prior. Was it because he hadn’t understood the importance of the follow-up? Was it confusion over medications? Did it have to do with cost? The notes themselves will not provide those answers because the answers will not matter; the medical establishment, says Donna McCormack, principal investigator of Transplant Imaginaries, a project on embodied ethics, “already deemed him a troublemaker.”
Bennett’s surgeon, Bartley Griffith, says he first told him about the experimental protocol in December. “We can’t give you a human heart,” he recalled for the New York Times, but they could use a pig’s heart—even though (and in some ways, because) it had “never been done before.” Griffith described it as a moon shot—where the patient is the one taking the real risks. But it’s important to note that those risks were paid for. Though neither the hospital nor the academic institution would reveal the cost of the procedure, they admitted to covering any fees not picked up by Bennett’s insurance, which, of course, would not have been the case in an ordinary procedure. In the present system, experimental surgeries rely on vulnerable patients who have no other way forward and nothing to lose.
In an unusual twist, shortly after the story of the transplant broke, the Washington Post reported that Bennett had served six years in prison for assault. The victim’s sister said he was “unworthy” of the surgery—to which the University of Maryland Medical Centre rightly replied that it was the “solemn obligation” of a hospital to provide care based entirely on medical need, not on his history. The irony—or rather, the noncompliance ethical dilemma—is that a patient’s past is never used as a reason for refusing treatment. Until it is. Bennett, by virtue of his noncompliance from years before, had already found himself on a hierarchy of care that had little to do with need, and everything to do with history.
For many who seek to further the field of xenotransplant, who justify experiments on individuals like Bennett, the point of farming organs would be to alleviate the shortage of organs for all patients. Jayme Locke of the University of Alabama at Birmingham, where a successful pig kidney was transplanted into a brain-dead patient last week, suggests pig organs will advance the entire field: “What a wonderful day it will be when I can walk into clinic and know I have a kidney for everyone,” she told the New York Times. The scientific advances, including genetic alterations, the cloning of DNA, and more, are truly remarkable, and the possibilities suggestive. But even if this works, the aspiration for “surplus” organs has its own ethical nadir.
Simply put, “it’s a fantasy,” says MacCormack. We could build new, vast farms of genetically modified pigs (with their own climate footprint); we could perhaps develop enormous warehouses of heart-lung machines to keep the pig organs alive and viable until transplant. But the myth of indefinite supply is yet another capitalist trap we are learning to mistrust. At present, the United States has a surplus of vaccines—but anti-vax movements notwithstanding, there are still plenty who cannot get access to them. “There’s never going to be enough,” MacCormack explains, “because they will keep changing the parameters as to who can get them, how unwell you can be, under what circumstances.” There will still be the dichotomy between who gets an experimental pig heart and who gets a safer, more trial-tested human one. Our medical systems have been built on the same capitalist hierarchies of haves and have-nots. They will always serve the most privileged at the expense of the least.
For proof, we need look no further than medical history. When in 1968 Christiaan Barnard took the heart from a 24-year-old Black man named Clive Haupt and placed it in the chest cavity of Philip Blaiberg, a white dentist with chronic heart disease, he didn’t just inaugurate a new era of heart transplant—he also stoked fears among the Black community. Haupt’s doctor described the pressure put upon him to declare the patient brain dead so that his heart could be used to save a life considered, at that time in apartheid South Africa, of more value. Will they work as hard to save our lives, asked The Afro-American, a weekly newspaper in Baltimore, or will doctors be willing to let Black patients die in order to take their organs and perfect their science?