These subjective criteria leave room for bias — and Black and Hispanic patients receive organs at lower rates.
It was a high-risk, experimental procedure, but Bennett had nothing to lose by the time his surgeon, Dr. Bartley Griffith, suggested the pig heart. More than 106,000 people in the US are on the transplant waiting list for human organs — waiting for the death of a registered organ donor who has a compatible kidney, lung, liver, or heart — according to the Health Resources and Services Administration.
Even that's a gamble. On average, 17 people die each day waiting for organs.
Bennett never made the list in the first place. In a Newsweek essay about performing the first pig-heart transplant, Griffith described a "severe obstacle" that made Bennett ineligible for a human heart: He had a history of being "medically noncompliant," or failing to follow doctors' orders.
Other hospitals declined to put Bennett on the national organ waiting list because he'd missed follow-up appointments and didn't take his prescribed medication consistently, Bennett's son told The Washington Post.
The Post's report also revealed that Bennett was convicted of a violent crime years ago. Criminal history doesn't factor into hospital decisions about who should get human-organ transplants, but the story stirred up ethical questions about who deserves access to the scarce supply of human organs in the US.
The thornier question, medical ethicists say, isn't about crime at all. It's whether a patient's failure to comply with doctor's orders should disqualify them from the national transplant list.
On one hand, human organs are an exceptionally scarce resource. Doctors want to give organs to patients who will take care of them. On the other, many patients struggle to follow doctor's orders due to structural barriers, such as poverty or limited access to health care or transportation. Barring them from life-saving organs could reinforce systemic inequalities.
Relying on medical compliance to determine who gets care can be a problem, according to Dr. Alyssa Burgart, a transplant anesthesiologist and bioethicist at Stanford University.
"It gets used against women, it gets used against people who are mentally ill, it gets used against people who are not white, it gets used against teenagers," Burgart told Insider. "It's this idea that if you don't do exactly what we doctors tell you to do, then you're a bad person."
Compliance requirements may put Black and Hispanic patients at a disadvantage
Ultimately, the decision to put a patient on the organ waiting list lies with each transplant hospital's selection committee, which typically includes surgeons, doctors, nurses, psychiatrists, social workers, and various specialists.
Committees' criteria for organ candidates is often a "black box," Burgart said, meaning standards vary and often aren't shared publicly.
There are no nationwide standards for how far a patient can stray from doctor's orders without disqualifying themself from an organ transplant.
The US Department of Health and Human Services, which runs the national organ-transplantation network, hasn't issued rules on the subject. However, the agency's organ-transplant ethics committee considered the question of compliance in a white paper, updated last year.
The paper details common criteria for organ transplant candidacy: life expectancy, "injurious" behaviors like substance use and unhealthy eating, social support for recovery at home, and medical compliance.
While giving organs to people who will adhere to a post-transplant treatment plan makes sense, the committee wrote, it's hard to predict which patients will do so. Patients with a history of missing appointments may live far away from their doctor's office, lack access to transportation or time off work, or face financial constraints. Hospitals should consider barriers and offer support when possible, the committee concluded.
"If we're asking patients to do things that are exceptionally challenging for them, certainly we can't be surprised if it doesn't work out 100% of the time," Burgart said.
There's little data on who gets labeled noncompliant, but Burgart and other experts fear subjective measures reinforce racial inequality: Black and Hispanic patients receive organ transplants at lower rates than their white counterparts. In 2020, 28% of Black patients on the waiting list received organ transplants, compared to 30% of Hispanic patients, and 48% of white patients.
Structural barriers, like poverty and lack of transportation, which disproportionately affect Black and Hispanic Americans, could explain this disparity. So could racial bias among health workers. In an analysis of medical records from more than 18,400 patients, published Wednesday in the journal Health Affairs, Black patients were more than twice as likely as white patients to have at least one negative word like "resistant," "challenging," or "noncompliant" in their records.
A new heart requires lots of care — even if it's from a pig
It's unclear how many appointments Bennett missed or how exactly he failed to follow doctors' instructions. The University of Maryland Medical Center declined to share details about its compliance criteria for organ transplants.
But if Bennett doesn't follow doctor's orders after his transplant, he could both endanger his own life and interfere with the study of his experimental procedure.
Because of his history, Bennett "is not your most-likely-to-succeed candidate," Arthur Caplan, a bioethics professor at New York University, told Insider.
Transplant patients must take immunosuppressants for the rest of their lives, in order to prevent their immune system from attacking their new organ. Transplants usually involve follow-up appointments and lab tests, so doctors can monitor the organ and adjust medications. A transplant is "taking one chronic disease and trading it for another," Burgart said.
Bennett will be closely monitored during his recovery in the hospital, and later, at a rehabilitation facility, the University of Maryland Medical Center told Insider in a statement. In addition to support from his family, Bennett will receive frequent visits from medical professionals to ensure he takes his medicine and adheres to his medical plan, the University of Maryland Medical Center added.
Genetically modified pigs could make organs more widely available
Ultimately, Griffith wrote, Bennett was the right patient for the experimental transplant because he had no other options. If he'd been eligible for a human heart, he wouldn't have been a candidate for a pig heart.
Previously, researchers had only connected a genetically engineered pig kidney to a brain-dead human. Though Bennett's transplant has been successful so far, experimental procedures are precarious. It's uncertain whether he will live through the year.
Genetically modified pig organs may not become a viable alternative to the human-organ waiting list for many years. But if the technology does succeed, it could save many lives.
"It breaks our hearts to not be able to transplant somebody," Burgart said. "We want patients to live. We want patients to have full and healthy lives. So I do think that transplant programs take this responsibility very, very seriously. And one way to make that better is if we have more organs."
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