By Brad Segal
Manuel—not his real name—was admitted to the hospital with decompensated heart failure. As a child he had scarlet fever which, left untreated, had caused the valves of his heart to calcify and stiffen. Over time, pumping against increased resistance, his heart’s contractions began to weaken until finally, they lost all synchrony and the normal function of his heart spiraled out of control. At this stage, his fate was tied to whether or not he would receive a new heart in time.
He was in his 30’s and had no other illnesses. From a medical perspective, Manuel was the ideal candidate for a cardiac transplant. But a decade ago Manuel crossed the United States border in pursuit of a better life. As an undocumented immigrant, he was ineligible for the insurance coverage necessary to pay for a heart transplant. After being thoroughly evaluated by the hospital’s transplant center, given his modest financial resources and inability to obtain new insurance coverage, Manuel was not placed on the waiting list for a new heart.
The average heart transplant costs about a million dollars to perform. Subsequent follow-up care adds another $30,000 annually. Health insurance will usually cover most, if not all, of these costs. But uninsured patients are kept off transplant lists on the grounds that the inability to pay for care allegedly jeopardizes an organ’s long-term success.
It is, of course, still illegal to pay for an organ in the United States. While scarce, organs are gifts donated (on good will alone) to the public. It is incumbent, then, on the nation’s transplant system to distribute organs fairly. Imagine it was up to you to design such a system of allocation—but that you have no idea how much money you will end up with, nor whether you will ever need an organ transplant. From behind Rawls’ so-called “veil of ignorance,” you probably would not decide to make the ability to pay a necessary precondition for life-saving transplant. In other words, excluding patients like Manuel from the transplant system the basis of his insurance status is neither fair nor just.
To be clear, a 1984 federal law mandates that among wait-listed candidates, allocation be exclusively based on “established medical criteria.” This rules out a two-tiered transplant system for citizens and non-citizens. It also forbids direct consideration of something like insurance status in decisions of organ allocation.
However, this legal constraint does not apply to the listing process. In fact, the same 1984 law established a separate process for candidates to be wait listed for an organ. Here, the patient’s ability to pay can and is taken into consideration. Most transplant centers will not list an uninsured patient for a heart transplant. Among the 2% of hearts that do go to the uninsured, typically patients must be able to afford upfront payment of around $200,000.
The economic effects of this are stark: eligibility for health insurance determines eligibility for an organ transplant. Usually people who cannot afford health insurance still have options to obtain coverage. Either a person can apply for a subsidy and obtain private coverage through an Affordable Care Act (ACA) marketplace, or receive publicly-funded insurance through Medicaid or Medicare.
Yet in the United States, access to health insurance hinges on immigration status, and as a result undocumented immigrants like Manuel are systematically excluded from the transplant system on the basis of their nationality. Both the ACA marketplace and most state-run Medicare programs exclude undocumented immigrants. Most states also explicitly refuse to reimburse the cost of an emergency organ transplantation for uninsured patients. While Manuel used to have insurance coverage through his job, his declining health forced him to quit. As a result, he lost his only path to health insurance. When he needed medical attention most desperately, Manuel found himself both uninsured and barred from obtaining new coverage.
As a result, undocumented immigrants like Manuel are regularly denied life-saving transplants. This seems especially unfair when you consider that immigrants in this country often choose donate their organs to the American public. According to the Organ Procurement Transplantation Network (OPTN), at least 3.3% of organs transplanted in this country came from non-citizens. Because undocumented donors are generally ineligible for transplant listing, though, largely the flow of organs is unidirectional.
Medical providers have a moral and professional obligation to never deny access to life-saving care on the basis of a patient’s identity or status in society. This is especially true for scarce goods. For instance, there are a limited number of beds in each ICU, and more people need ICU-level care than there are beds available. ICU beds, therefore, must be fairly rationed. It is inconceivable that physicians would deny a request for an ICU bed because of the patient’s personal background. Why should organs be treated any differently? To maintain a fair and equitable system of organ allocation, then, transplant centers must begin offering undocumented immigrants like Manuel the opportunity to be listed for a transplant—independent of their ability to pay.
In the long run, the costs of caring for uninsured transplant-recipients need a national funding body in order for this endeavor to be sustainable. One option is that the United States government reimburse hospitals for uncompensated transplant-related care through the existing (but currently unfunded) process for federal DSH payments. Another is that United Network for Organ Sharing, the group charged with overseeing the transplant system, absorb these costs and then try to offset them through dedicated fundraising efforts.
Implementing change on this scale will occur too slowly to help patients like Manuel. In the short term, then, hospital systems need to take responsibility for transplant-related costs when patients lack viable routes to insurance coverage. This would, of course, put a financial burden on the non-profit organizations which charitably operate the nation’s transplant centers. Yet undocumented immigrants rarely require transplants relative to the general public. As a population, they have better health than their American-born counterparts. Moreover, the evidence suggests kidney transplants are less expensive than emergency dialysis for uninsured patient (an expense which hospitals often must assume).
To reframe the debate, though, that transplants for the uninsured will become pro-bono ought to be viewed as the cost of justice in organ allocation. Surely, if an institution like Partners Healthcare in Boston—which has not one but two cardiac transplant centers, plus an annual revenue exceeding $12 billion—is committed to the underlying ideals of its transplant system(s), they will find a way to offset the expense of treating undocumented patients like Manuel.
Some might worry that providing immigrants with access to transplants would worsen shortages for everyone. This is an empirical concern—but it is not clearly supported by the evidence. One study, for instance, found that most undocumented immigrants in need of a kidney transplant had a relative would who donate a kidney if permitted. In addition, transplant guidelines already do not explicitly forbid foreign nationals from being listed for a transplant. Instead, the barriers to care for individuals like Manuel are grounded in socioeconomic status. That the ability to pay is inauspiciously being used in allocation decisions undermines the transplant system’s ethical obligation to oppose the sale of human organs. This resource ought not be given exclusively to individuals who can pay.
Especially in light of President Trump’s recent changes to deportation policies, many well-meaning providers may worry it is too risky a time to start offering transplants to undocumented immigrants. Say Manuel had received a new heart but he was subsequently deported. In the absence of follow-up care in America, how could the hospital guarantee the patient will have a good long-term outcome?
Yet denying certain immigrants access to transplants on such grounds only assures they will not have a long-term outcome. Denying access to the modern transplant system and all of its medical benefits for the least well off members of society is unconscionable. Now more than ever, medical professionals must stand up for professional values; partisan politics ought not take precedence over a provider’s obligations to provide care regardless of politically-charged aspects of a patient’s story. Providing undocumented immigrants with organs would send a powerful message that the healthcare system is safe to all; lamentably, it is too easily forgotten that medicine strives to provide care independent of the political fray.
In the United States, children with scarlet fever hardly ever develop heart disease anymore. Manuel picked this country for its abundant resources and its endless opportunities. But his legal status and modest financial circumstances closed the door to medicine’s most lauded innovation. His providers exhausted the alternative treatment options, but excluded from the transplant list, Manuel’s life was not saved.
Legal status must not be conflated with moral status, especially in the eyes of medical providers. All persons have an inherent dignity, and all persons deserve a chance to benefit from organ transplantation—regardless of where they happen to be born.