The perception is widespread: If you have a history of drug use, your chances of a transplant for a failing organ are vanishingly slim.
“It’s always been common practice that if you use a substance regularly and are poor, you’re unlikely to get an organ transplant,” a harm reduction worker in Toronto, who didn’t wish to be named, told Filter.
One thing we know is that active drug use usually disqualifies you from being on the waitlist for organ donation in the United States—although a strictly required period of abstinence could be enough to make it. The extent to which this is clinically justified is often unclear. And experts say individual transplant centers’ willingness to work with patients who use drugs is influenced by highly subjective views about their likelihood of meeting clinically-indicated requirements for a safe and successful transplant.
It is devilishly hard—perhaps impossible—to separate potential bias against people who use drugs from other obstacles to finding a place on an organ donation waiting list, including valid clinical concerns.
To be clear, people who use drugs are not automatically at higher risk of organ failure in most cases. Opioid overdose, for example, does not cause organ failure or lead to need for a transplant. Nonetheless, people who use banned drugs or have substance use disorder have been found, on average, to be admitted to hospitals more often than the general population—something not necessarily caused by that drug use, but linked to factors like social exclusion and higher rates of tobacco smoking.
Both both alcohol use disorder leading to cirrhosis and hepatitis C, which may be acquired through injection drug use, may result in liver failure. HIV, which may also be contracted through injection drug use, may result in the need for a kidney transplant. A person may need cardiac valve surgery to treat endocarditis, for which injection drug use is one risk factor.
Or people may experience organ failure for reasons unrelated to their drug use; Black and Indigenous Americans are among those to have faced disproportionately high death and hospitalization rates from COVID-19, for example, which can lead to organ damage during acute infection or later.
National data accessed in December lists 199 patients with diagnoses of drug-related nephritis on the waitlist for a kidney transplant, and 1,326 patients with diagnoses of alcoholic cirrhosis waiting for a liver. (Which doesn’t mean active substance use.)
Meg Inwood has known “almost 20” people with alcohol use disorder trying to get a transplant. “One made it. One.”
In Australia, this issue achieved national prominence a decade ago in the person of Claire Murray, who died of complications from a liver transplant in 2010, but whose search for a second liver—she disclosed having used drugs after her first transplant—provoked public condemnation and a brutal “trial by media,” with scathing articles and polls on whether she deserved a second chance at life.
In the US, a person with Murray’s history is more likely not to make it onto the waitlist for an organ, nor—if, like Murray, they are not actively using drugs while seeking a transplant—to get clarity about the reasons for being refused.
Beth Lehman, a liver cancer survivor and liver transplant recipient in Atlanta, required a transplant after her drinking resulted in cirrhosis. Already abstinent, she spent six months in alcohol use disorder (AUD) counseling to qualify for a transplant at the particular center she went to—not an option at all centers. You must first be accepted by a transplant center before you can be added to the national waitlist for an organ.
“There’s that extra step in there of the evaluation of ‘how likely is this person to relapse after transplant,’ and you get a score for that,” Lehman, now a patient advocate, told Filter. “And then … it’s on the transplant center, whether you continue on to get on the list or not.”
Recovering from AUD was crucial for Lehman. Meg Inwood, a Toronto writer with a long history of substance use, has known “almost 20” people with AUD trying to get a transplant, she told Filter. “One made it. One.”
“Then it’s the same old story, you have to wait in line,” she continued. “And cancer patients, ICU patients, accident patients—anyone who didn’t ‘do it to themselves,’ is ahead of you on the list.”
According to the Canadian Liver Foundation, “patients who continue to drink alcohol despite medical advice are not considered for transplantation in Canada.” Although since 2013, when a six-month abstinence policy applied, more programs perform liver transplants for people with less than six months’ abstinence, while policies on opioids and cannabis vary.
In the US, abstinence from alcohol for six months would, with very few exceptions, be the absolute minimum for such a patient to be considered.
Allocation and Ethics
There, the United Network for Organ Sharing (UNOS), a nonprofit appointed by Congress, is charged with ensuring equitable and timely transplants, and with administering the Organ Procurement and Transplantation Network (OPTN)—a public-private partnership that links organ donation and transportation professionals nationwide.
Despite these networks, for a patient whose substance use precludes treatment for any condition resulting in organ failure, it might be challenging indeed to see anything equitable or timely about it.
With cardiac valve surgery, there isn’t a similar network involved, but lack of tracking of patients with opioid use disorder who receive a new heart valve makes it hard to know whether OUD patients are being unfairly denied treatment. Some people believe it’s clinically poor practice to keep offering this surgery to a person who continues to resume injecting drugs, as repeated surgery may result in scar tissue forming; again, it’s hard to separate such arguments from the idea that a person who uses drugs may not “deserve” treatment.
One rare study found an acceptable survival rate among recipients with a history of “substance abuse.”
It’s no wonder, with so little data or transparency, that people who use drugs may feel that the health care system, contrary to official claims, treats addiction as a moral failing.
A 2001 study looking back at outcomes among heart transplant patients at one center found an acceptable survival rate among recipients with a history of “substance abuse”—although resumptions of use did occur and there was greater non-compliance with transplant treatment regimens compared to other patients.
In the rationale for this rare study, the authors noted that “active substance abuse is widely accepted as a contraindication for heart transplantation because of the theory that relapse would occur after transplantation and result in compromise of graft function, lowering long-term survival.”
There appears to have been no research since to either confirm or refute these findings, or determine their relevance to policy. With research driven by funder priorities and the interests of researchers, there’s no way for patients to have much confidence that current abstinence requirements are supported by evidence.
Opioid-involved overdose deaths have, meanwhile, become a substantial source of healthy organs in recent years. It’s a situation cardiothoracic surgery resident Dr. Jason Han described for the Journal of the American College of Cardiology in 2018, asking, “Should we view this as a tragedy, or dare we frame it as an opportunity?” He noted then that such donors had a median age of 31 and generally had few comorbid conditions.
People who use drugs have been “celebrated” as organ donors in articles about the unanticipated, uncomfortable “upside” of the overdose crisis. But what about those who find themselves on the other side of the donation relationship, in desperate need of an organ?
There’s almost no area of medicine that involves greater agonizing than achieving an ethical allocation of scarce organs.
“[A] concern is [with] an organ that’s a limited, scarce resource in this country that only emerges when somebody else dies from unforeseen circumstances,” Dr. Han told Filter, five years after his article was published, “Maybe that organ should not be allocated towards people who may not—I don’t want to say benefit from it—but who may not follow the clinical regimen required to take care of it.”
And yet, there’s almost no area of medicine that involves greater agonizing than achieving an ethical allocation of scarce organs by balancing principles of utility and justice.
One of the tenets of organ-donation ethics is that an idea of “social worth” should not determine who has access. In its ethical principles, the OPTN states:
“[T]he social worth or value of individuals should not be considered, including social status, occupation, and so forth. Moreover, in determining predicted medical benefits and harms, there also is consensus that it is unacceptable to use variations in transplant outcomes among social groups as a basis for predicting individual outcomes. For example, even if there is empirical evidence that survival rates of one race, gender, or socioeconomic group exceed those of another, these factors should be excluded from utility models used to justify allocation decisions.”
While utility—the likelihood of maximizing medical benefit for the most people possible—is one principle that ONUS must try to honor as it administers the OPTN, so is fairness: “Factors to be considered in the application of the principle of justice are: 1) medical urgency; 2) likelihood of finding a suitable organ in the future; 3) waiting list time; 4) first versus repeat transplants; 5) age; and 6) geographical fairness.”
This might mean “prioritizing the medically sickest patients even if it is predictable that other patients who are not as sick will have better outcomes.”
Utility, on the other hand, means that deemed likelihood of survival is a factor—among others, like distance from donor hospital or how long you’ve been waiting—in how UNOS prioritizes allocations of available kidneys and lungs (though not hearts and livers, at least not once a transplant center has put you on the list).
But as the OPTN recognizes, whether ethical principles apply in practice really depends on how people are placed or denied a place on the transplant waiting list. Here, once more, clinical considerations can be very hard to separate from other issues.
Signs of Improvement?
Societal beliefs about the efficacy of liver transplants for people with AUD—and whether they “deserve” a new liver—meant it used to be impossible for such patients to get on a waiting list. Technically or officially, this was a clinical concern.
But years of research on actual clinical concerns and safety have resulted in a change in practice over time: Now, a person with diagnosed AUD or a history of heavy drinking can get onto the waitlist so long as they demonstrate that they’re receiving AUD treatment or have been abstinent for a year, according to Arthur Caplan, a renowned bioethicist at New York University—although UNOS currently states that a six-month period of abstinence from drugs (including cannabis, as well as alcohol) is required.
Better hep C treatment has led to a change that means some people with drug-use histories can now receive a transplant that would previously have been thought unlikely.
In fact, there are a few centers in the US that—like Canada, and as has been common in Europe for some time—now perform transplants in patients who have not met this six-month requirement. Johns Hopkins, for example, transplants about 25 livers annually for patients who otherwise would not receive a desperately-needed organ—following on from research, initially in Europe, showing that the traditional abstinence period wasn’t clinically justified (although abstinence from alcohol is necessary after the transplant).
In a similar vein, better antiviral treatment for hepatitis C has led to a change in practice that means some people with drug-use histories are now able to receive a transplant that would previously have been thought unlikely to be worth performing due to poor chances of success.
Such improvements haven’t only been a question of scientific advances. They first required advocacy from community members and researchers who didn’t see people who use drugs as less “worthy.”
As Dr. Caplan told Filter, there are three levels of decision-making on who gets an organ: overall eligibility, individual treatment center decisions, and clinical decisions as organs become available.
The second step—once ineligible groups, such as older Americans, usually 70 and up, are excluded—is when most people who use or have used drugs may find themselves excluded without recourse or explanation.
Lack of Transparency Among Transplant Centers
“To reiterate, only patients added to the waiting list can receive organ offers, which applies for all organ types,” UNOS stated recently, in response to questions about liver allocation policy from the Washington Post/the Markup. “The overall healthcare landscape in a given state, which varies widely, may impact who does and does not get added to the waitlist.”
“Each individual transplant center gets to decide who they want to take on as a patient,” Caplan said. “Transplant centers have no obligation to take anybody, because [in the US] there is no right to health care.”
Is there ever documentation of whether a given patient is refused for solid clinical reasons, or whether it’s instead relating to subjective behavioral or community-support concerns?
“I’m gonna say internally,” Caplan replied. “But not in a transparent way.”
“It’s kind of humiliating that that’s what they were saying, and giving me a score on it, and I didn’t know.”
One 2021 consensus document by the International Society for Heart and Lung Transplantation provides guidance for centers around lung transplants, for example—though US centers certainly aren’t obligated to follow it. It includes a complete contraindication for patients with “active or dependent drug use,” including injection drug use and cannabis smoking, as well as tobacco smoking or vaping.
The smoking part is not about legality versus legality, or even about use disorder, but about the impact on a new lung. This may mean treatment, with transplant waitlisting then possible if the patient is deemed stable. A patient who smokes cigarettes, the document states, should demonstrate long-term (over six months) abstinence—including, perhaps bafflingly, from nicotine replacement therapy involving no inhalation. Inhaled cannabis must be stopped before transplant; orally consumed, it may be ok if medically approved. Opioids for pain or OUD treatment are to be assessed on an individual basis.
At University of Washington Medicine, to take an individual example, substance use figures in kidney transplant selection as a question of whether team specialists consider a patient’s use—prescription, legal or illegal drugs—to be harmful, and whether they accept evaluation, treatment and followup for substance use history if required. Tobacco use is an absolute contraindication.
Beth Lehman believes there should be greater transparency about what role current or past substance use might play in a given center’s evaluation.
“[S]ome transplant centers tell you you’re being evaluated and some maybe not. I was very naive going into the process,” she said. “So when the doctor came in and was talking to me—and realized that I was taking Xanax and told me that I was an addict, and I need to quit taking Xanax, and [that] I didn’t at the time realize that psychologically—that was a review of me. So I think in hindsight it’s kind of humiliating that that’s what they were saying, and giving me a score on it, and I didn’t know.”
“If you don’t have a right to health care, you’ve got a lot of discretion on the part of providers. You know what I mean?”
Dr. Caplan noted that just as a person who is homeless and needs a new liver might be quietly dismissed as a “difficult patient” (even if they could afford it), so too might anyone else.
For instance: “If you showed up and said, ‘I’ve been referred here because I have severe pulmonary problems,’ and they did an interview with you and said, ‘Oh no, she’s kind of a pain in the neck. She has views about alternative medicine. She’s coming from far away. We’re not going to take her into our pulmonary program.’ That happens. If you don’t have a right to health care, you’ve got a lot of discretion on the part of providers. You know what I mean?”
“There’s subtle and unseen rationing” against people with substance use disorder, Caplan said, “but it’s before they make it to the national list.”
Although most clinics don’t outright refuse patients receiving prescribed methadone or buprenorphine for OUD, there is a lack of national standards to ensure they’re not discriminated against.
UNOS works to promote equitable access amid the inconsistency of individual treatment centers. “They all have their own policies and my understanding is that they evaluate patients and then bring the whole team together and discuss each case and decide whether or not to list,” UNOS media relations staffer Anne Paschke told Filter. “So we are basically the allocation piece, so once they list patients, that’s where we can adjust allocation policy based on outcomes to ensure that it is as fair to all groups of people as possible.”
Of course, a chronic shortage of organs means that a certain amount of rationing, as well as triaging to ensure those at most imminent risk of death are served with greatest urgency, is inevitable. But the likelihood that otherwise clinically acceptable transplant recipients might be denied access to a lifesaving intervention, for reasons that have more to do with subtle stigma about drug use, drug users and even addiction treatment, is chilling.
“I think in general, so many transplant centers … treat [addiction] as something that you’re to blame, and you get disqualified,” said Caplan, who has written extensively about organ donation ethics and contributed to the American Association for Thoracic Surgery’s 2023 Expert Consensus Document on adult heart transplants using donors after circulatory death. “I also think with a big shortage of organs, they’re looking for ways to exclude people because you know, they’ve got to make choices. So lifestyle, prison status.”
In a situation where rationing is necessary, though, shouldn’t there be a clear and transparent process, including at the level of the individual centers, for determining whose lifestyles are considered disqualifying factors—and shouldn’t that be based on their impact on successful or even resource-effective treatment, rather than on moral judgment?
“There are some loose criteria to suggest that this person might be high-risk versus not, but it’s nothing anybody has a definitive sense over.”
The OPTN ethical principles document mentions “ethical rules (e.g., honesty, the duty not to harm), clinical indicators (e.g., comorbidities, cause of organ failure) and psychosocial factors (e.g., financial and social support, patient adherence)” as factors relevant to being placed on a transplant waitlist that are distinct from the utility and justice principles.
Dr. Han believes that whether someone could be a candidate is mostly based on medical criteria, with perhaps 90 per cent of the discussion relating to anatomy, conditions and age. “And then in addition to that, I think the [transplant center] committee just wants to make sure in general that they would be able to take care of themselves afterwards,” he said. “And that’s a subjective discussion. And there are some loose criteria to suggest that this person might be high-risk versus not, but it’s nothing that anybody has a definitive sense over.”
“I think people take psychosocial support and these decision-making processes very seriously,” Han said. “And at least in this country, right now, it’s a heavily stigmatized subject.”
People who use banned drugs may be presumed—according to the “loose criteria” Dr. Han mentioned—to be incapable of meeting commitments or sticking to a schedule, or to be outcasts without a community to help out.
This could be a self-fulfilling prophecy, as unconventional networks of support can’t be activated if patients aren’t made aware of the possibility of doing so—cancer treatment and support for people in precarious housing situations might draw friends, harm reduction communities and social service organizations into a network of care, for example.
The OPTN observes in a notice about increasing transparency in program selection that:
“Disparities in access to care may be exacerbated by a lack of public information about transplant programs’ listing practices. For example, patients may be unaware of differing [body-mass index] thresholds, abstinence requirements for substance use, social support requirements, and financial requirements between programs.”
But the OPTN’s goal is to improve patient awareness about obstacles to making it onto the waiting list—not necessarily to improve transparency about why a particular patient was denied. And certainly not to delve deeply into whether the criteria involving substance use or abstinence are clinically justified and to what extent.
Can You Pay?
Everyone who spoke with Filter for this article emphasized that while there may indeed be discrimination against people who use drugs or have substance use disorders, there’s an even bigger barrier facing such patients.
Most people who use drugs and require an organ transplant will never reach the stage of facing individual transplant center attitudes, let alone consideration of their clinical suitability for a particular donor organ that becomes available, because they can’t afford to be evaluated by a center in the first place.
In fact, everything about access to a needed organ donation is subject to the issue that bedevils all US health care: ability to pay. For perhaps the majority of people who use drugs or have a use disorder, this conditions everything else.
Many people who use or have used drugs are “part of the group that’s penalized because they can’t pay.”
Ability to pay often determines access to the various steps of medical appointments and tests that would result in a diagnosis in the first place. A person who needs an organ may die without ever knowing they were on the verge of organ failure, or only learn of their condition when they present at emergency, far too late for intervention.
Those who do get the routine health care and workup of symptoms to identify failing organs in time may still not get to the stage of identifying potential treatment centers, undergoing the treatment center’s evaluation, or making it onto the waitlist, all because of cost.
Medicare may help with a kidney transplant, but not for most other organs. And most private insurance will cover things like a heart, but not transplants seen as more experimental, such as a limb. Immunosuppressive drugs, required long-term after a transplant to prevent the patient’s body rejecting the organ, can cost tens of thousands of dollars a year.
As Caplan noted, many people who use or have used drugs “are also people who don’t have insurance or have very poor insurance. They’re part of the group that’s penalized because they can’t pay.”
Photograph by North Dakota National Guard via Flickr/Creative Commons 2.0
R Street Institute supported the production of this article through a restricted grant to The Influence Foundation, which operates Filter. Filter‘s Editorial Independence Policy applies.
Show Comments