I am worried your brother might not be allowed to give you a kidney, Jose,” I said to my patient of 5 years while shifting my feet, nervous that my actions would give away the guilt that was suffocating me.
I had taken care of Jose throughout his journey with kidney disease, and he was now approaching the need for dialysis or transplantation.
Jose was accompanied by his Spanish-speaking brother, who looked bewildered as he read our faces. Fumbling with the contents of his wallet, he pointed to the heart on his driver’s license.
Unsure how to respond to this stark awareness of our healthcare system’s double standard regarding organ donation, I sought refuge in my computer screen while the brothers conversed in Spanish. At a loss for words, I looked up apologetically as Jose said, “Gracias, Doctora.”
Background
Approximately 10.5 million unauthorized immigrants lived in the United States in 2017 (1), and an estimated 6500 of them had kidney failure (2). The diagnosis of kidney failure grants nearly universal health insurance coverage for provision of dialysis to citizens in the United States; however, undocumented immigrants’ lack of eligibility for state-funded insurance programs has resulted in divergent practice patterns across the states with regard to the availability of scheduled dialysis and organ transplantation (3).
Current legislation
The policy of the Organ Procurement and Transplantation Network (OPTN) clearly states that “deceased donor organ allocation to candidates for transplantation shall not differ on the basis of the candidate’s residency or citizenship status in the United States.”
There appears to be no legislation barring undocumented immigrants from receiving organs, but the lack of federally funded health insurance achieves that end, resulting in automatic and indirect exclusion. The Omnibus Budget Reconciliation Act passed by Congress in 1986 prohibits the use of federal Medicaid funding for payment of care provided to undocumented immigrants except for what qualifies as emergency medical care under the Emergency Medical Treatment and Active Labor Act (EMTALA).
In 1996, further legislation denied all state and local public benefits to undocumented immigrants and left the states to pass their own laws to determine the eligibility criteria under which public benefits would be available to undocumented immigrants. Additional legislation was passed to augment federal Medicaid funding to states with the greatest number of undocumented immigrants. Undocumented immigrants with catastrophic illnesses such as kidney failure, cancer, or traumatic brain injuries are also excluded from the Patient Protection and Affordable Care Act.
Under EMTALA, all states must offer at least emergent-only dialysis to all patients; however, kidney transplantation is not considered to be part of this program and is not offered to undocumented immigrants (4). Illinois was one of the first states to offer organ transplantation to undocumented immigrants under state-funded Medicaid, followed by California.
By contrast, once undocumented immigrants do enter the healthcare system, the mandates by the Joint Commission and Medicare ensure they are asked regarding their wishes about organ donation without any consideration of their citizenship status (5).
Transplantation outcomes
Most undocumented immigrants who reach kidney failure are younger, are more likely to be employed, have better functional status, and have fewer comorbidities despite longer wait times for transplantation compared with citizens receiving dialysis (4, 6). Hence, it would be reasonable to expect them to do well as transplant recipients.
A study by Shen et al. (6) compared transplantation outcomes in undocumented immigrants with those in citizens and found that nonresident aliens had a >45% lower unadjusted risk for all-cause transplant loss, death-censored transplant loss, and death compared with US citizens. In the pediatric population, a similar study from California found undocumented children to have similar graft survival 1 and 5 years after transplantation, and their mean estimated GFR at 1 year was higher than that in recipients who were citizens. In addition, the risk of allograft failure was lower in undocumented recipients than in citizens 5 years after transplantation, after adjustment for patient age, donor age, donor type, and HLA mismatch (7).
Transplantation outcomes have also been explored in other solid organ transplantation settings; for example, in one study the liver and graft survival among unauthorized immigrants was comparable to that in citizens/residents (8).
Inherent limitations of all these studies include that the classification of non–US citizens and non–US residents is based on self-reporting and thus they are at risk for misclassification; furthermore, owing to the tenuous path to organ transplantation, there may be a selection bias to include recipients with better financial and social support, which would explain the optimal transplantation outcomes. Nonetheless, undocumented residents appear to protect their transplanted organs just as well as citizens, resulting in better outcomes.
Patient perspectives
Even though a greater percentage of Hispanics have kidney failure, disproportionately fewer Hispanics than whites receive a living donor kidney transplant (9). In addition to system-level barriers mentioned previously, studies have explored the knowledge and attitudes of undocumented immigrants toward organ donation.
Baru et al. interviewed 59 undocumented immigrants from Chicago in a qualitative study and concluded adequate knowledge among 65% of participants (10). The study participants showed a willingness to donate despite being suspicious of the healthcare system and in the face of the knowledge that they had few chances of receiving organs themselves.
In a study of the illness experience of undocumented immigrants receiving dialysis, many participants wanted to undergo transplantation and had family members interested in donating a kidney; yet, they lacked access because of insurance-related reasons. They were aware of the double standard concerning organ donation and their ability to donate after death despite their ineligibility to receive organs (11). Other studies among Hispanic populations have also identified lack of knowledge, financial barriers, and logistic barriers to organ donation (12, 13).
Ethical analysis
Right to healthcare
Those who oppose undocumented immigrants’ right to healthcare do so on the basis of the immigrants’ illegal status in the country and have concerns regarding their financial contributions to society (14, 15). Furthermore, others believe that by offering free healthcare to undocumented immigrants we may be extending an invitation for abuse of limited healthcare resources, resulting in an unfair burden on society (15).
Proponents argue that access to healthcare is a basic human right that should be granted to all. Several studies have shown transplantation to be cheaper than emergent dialysis, making it the more financially feasible option for society (16). It is imperative to mention that undocumented immigrants do contribute financially in the form of nearly $12 billion in taxes, with $2.4 billion directed toward Medicare, contributing substantially more than what they withdraw in comparison with citizens. They also generate a surplus in the magnitude of billions in Social Security programs, which they are unlikely to claim (17).
Beyond the scope of this article, but prudent to mention here, is that the right to healthcare in the United States even for citizens is under debate because it would mean nearly universal healthcare coverage. That is not the case, despite the obligation many physicians feel to provide such care.
A healthcare system that readily accepts organs for donation from a subset of the population without addressing their inability to receive organs seems grossly unjust. No comprehensive data on the citizenship status of organ donors is available from procurement organizations, although studies show that undocumented immigrants are more likely to donate than they are to receive (18).
According to OPTN data, illegal immigrants contributed as much as 2.5% of all donations between 1988 and 2007 but received only 0.63% of the organs. One would expect that with this knowledge, fewer individuals would donate; however, studies have shown high donation rates despite the awareness of this double standard (10).
Rationing of limited resources
Opponents argue that organs are a limited resource and should be rationed to legal residents who are most likely to benefit from them and demonstrate the highest need. Studies have reported that undocumented immigrants are more likely to have living donors, the majority being healthy family members (6); hence, they are less likely to affect the organ pool. Furthermore, they contribute as living and deceased donors; however, their ability for living donation is limited.
Undocumented immigrants who receive transplants have transplantation outcomes comparable with those of citizens and are more likely to be employed, consistent with judicious use of organs, resulting in maximum benefit to recipients.
Conclusion
Making transplantation available to undocumented immigrants with kidney failure is the ethical, humane, just, and economically feasible path to take. The United Network for Organ Sharing needs to develop a transparent policy reflective of public opinion when it comes to transplantation in undocumented immigrants. Efforts should be made to highlight their economic contributions to society, their minimal use of healthcare resources, and their continued contribution to the organ pool, which exclusively benefits citizens. We must at least advocate for living donation in this disadvantaged population, allowing them to continue to be productive members of society without tapping the organ pool.
References
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U.S. unauthorized immigrant total dips to lowest level in a decade. November 27, 2018, Pew Research Center.
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Herring AA, Woolhandler S, Himmelstein DU. Insurance status of U.S. organ donors and transplant recipients: The uninsured give, but rarely receive. Int J Health Serv 2008; 38:641–652.