Access to Transplantation for Undocumented Pediatric Patients

A 5-year-old boy presents to the emergency department (ED) with 8 days of worsening periorbital edema to establish care with pediatric nephrology. The child was diagnosed with steroid-dependent nephrotic syndrome at 2.5 years of age in Honduras and treated with daily prednisone for 3 years, complicated by cataract formation and intravenous cyclophosphamide, with at least a partial response noted. He stopped responding to treatment, and the mother was told to take the child home to die peacefully. The family crossed the US border and entered the United States in Texas, where he was started on alternate immunosuppressive therapy and underwent cataract surgery. The family was relocated to our region shortly before arrival in the ED. His evaluation in the ED revealed significantly elevated serum creatinine at 4.0 mg/dL, increased from the previous baseline at 1.7 mg/dL. His renal function continued to worsen, necessitating the placement of hemodialysis access, and he started chronic hemodialysis 10 days after initial presentation to the ED.

The patient’s hemodialysis course has been complicated by severe hypertension, globe rupture, dialysis access malfunction, superior vena cava thrombus, and pulmonary embolus. He has required 16 hospitalizations since his initial presentation 2 years ago. He has had numerous admissions for hypertensive emergency and has undergone radical bilateral nephrectomy because of uncontrollable hypertension, feeding tube placement, 4 hemodialysis catheter revisions, and ophthalmologic repair of globe rupture over a total of 140 inpatient days since his initial ED presentation. He has suboptimal weight gain and has not been able to regularly attend school because of frequent hospitalizations and hemodialysis treatments.

Although transplant would be the optimal modality of renal replacement therapy, the patient has been insured through the Maryland Department of Health’s Children’s Medical Services (CMS) program, which will not provide coverage for transplant services.

We ask the following question: should undocumented children currently residing in the United States with end-stage renal disease have access to kidney transplant?

The moral and ethical answer is really simple. Yes! This child’s immigration status does not reduce his value as a human nor does it reduce our obligation to him as our patient. This child should be considered a possible kidney transplant recipient, as would any child who was a US citizen with end-stage kidney disease (ESKD). If the existing state laws, health care coverage, and reimbursement schemes in Maryland make access to transplant difficult or impossible, it is the prerogative of the child’s health care team to advocate for those restrictions to change. But is it really as simple as that?

The benefits of transplant over dialysis are clear: transplanting this child will likely improve both his life expectancy and quality of life.^1,2  With a successful transplant in this medically complicated patient, we may significantly reduce hospitalizations because most of his previous hospitalizations appear to be catheter and hypertension related and will be ameliorated with a successful transplant. A transplant is generally much less expensive than dialysis, especially compared with the expensive emergency dialysis to which some undocumented residents are restricted, so the CMS program will still likely save money by paying for his transplant surgery and ongoing medical care and immunosuppression.³ 

Should we offer transplant to this little boy knowing that his risk of recurrence, assuming he has primary focal segmental glomerulosclerosis (FSGS), could be as high as 80%? First, the quality of his diagnostic evaluation and treatment when he lived in the Honduras is unknown, and his medical team in the United States has not been able to access genetic testing to better clarify his prognosis. Although we presume his long-term treatment with prednisone was because of some type of steroid sensitivity, suggesting primary FSGS, it is possible that he had secondary FSGS, which would not be expected to recur. Even if we were certain of his primary disease, our current practice for an American child would be to offer transplant while planning for and managing recurrences if and when they occur.⁴ 

But can the medical team expect that this family will adhere to the posttransplant care well? In fact, he may actually have a better prognosis than his American peers. In a study of pediatric kidney recipients in California, authors found that graft survival at 1 and 5 years posttransplant was similar between undocumented recipients and US citizen children, and the mean estimated glomerular filtration rate at 1 year was higher in undocumented recipients than in US citizens.⁵  In fact, graft survival only fell sharply in this group once children were transitioned to adult care and lost their immunosuppressant drug coverage, arguing again for better advocacy for this cohort of vulnerable patients.

Should the fact that this child came to the United States with a preexisting diagnosis of chronic kidney disease preclude him from transplant? A transplant for a patient like him is not likely to lead to an increase in the numbers of undocumented immigrants coming to the United States because immigrants are not overwhelming American dialysis centers.^6,7  The prevalence of ESKD in undocumented immigrants in California, for example, is estimated to be approximately one-sixth that of the general US Hispanic population, generally thought to be because of the younger and healthier population making the immigration voyage.⁸  Although we know this child entered the United States with kidney disease, we do not know if his renal prognosis was truly understood or how it factored in their decision to enter the United States illegally: they likely had a lot of other good reasons to want to leave Honduras. The British-Somali poet Warsan Shire writes of refugees “no one leaves home unless home is the mouth of a shark.”⁹  This family was fleeing an economically and politically unstable country with their sick child who would most likely die if they could not move to a safe place with advanced health care options. The complex and intense reasons that they left their home are likely unimaginable to those of us privileged to live in safe and affluent countries, but we can and should offer safe medical haven when families do flee the sharks of their homelands.

Could transplants for undocumented residents like this little boy be giving them a “free ride” and further worsen the organ shortage? Undocumented immigrants give more both in Medicare contributions and as organ donors than they receive.^10,11  If these individuals, or the groups to which they belong, are contributing to the system that makes deceased organ donation possible, then they should also be allowed to benefit from such a system.^12,13  In addition, this child may not be taking from the organ pool at all. US Renal Data System data reveal nonresident aliens are more likely to have a living donor than are US citizens, and ∼75% of the kidney transplants for undocumented residents in Illinois have come from living donors since their laws expanded to cover transplants in this population.^14,15 

So, we come back to our original question: is the answer to the question of whether we should offer transplant to this child really as simple as that? We believe it absolutely is. Offering this child a transplant is the right thing to do, it will save the system money, and there is little chance of harm to others. Although in this case the health care team is being prevented from doing what is right by existing regulations, these regulations and laws can be changed. Change has already come to some states, such as Illinois and California, which now cover such transplants under state-sponsored insurance, and the United Network for Organ Sharing no longer restricts or audits programs for exceeding a quota for “noncitizen/nonresident” transplants.^7,16–18  Despite these changes, these states are not seeing an influx of immigrants with or without ESKD. The pediatric community has the opportunity and responsibility to advocate for immigrant children like this patient and all others who need our care.

As the primary medical team, our ethical obligation is to provide care that will result in the maximal good for the patient and to minimize harm. Numerous studies have revealed transplant to be superior to dialysis in children for optimizing growth, reducing cardiovascular disease risk, facilitating neurocognitive development, and improving quality of life for the patient and caregivers.^19–21  However, without financial clearance for the transplant, we are unable to provide the evaluation, surgery, or necessary follow-up care required for a successful transplant. Providing the patient a transplant without appropriate follow-up care would cause medical harm because it would expose him to suffering from the surgery and rejection episodes and make subsequent transplant much more difficult because of immunologic sensitization. In this clinical case, the ethical principle of nonmaleficence is violated because not offering access to transplant is clearly causing this patient harm, and the principle of justice is violated because other children with the same disease would be offered this treatment.

At this time, the only medical insurance that could be secured for the patient is through the state’s CMS program, which is designed to provide limited medical coverage for specialty care. On the CMS Web site, it is noted that “CMS does not cover routine check-ups or immunizations, sick visits, emergency services, routine dental care, or mental health services.”²²  It is therefore the state that is restricting access to care that is recommended by the patient’s physicians. This is not a unique situation and has arisen more frequently around the country in the recent past as state legislatures seek to govern doctor-patient interactions, including restricting questions about gun safety, forcing medical providers to provide scientifically inaccurate information, and restricting access to medical procedures.²³  In those situations, clinicians have found ways to legally get around the law in clinical practice while publicly advocating for their change. The restriction on transplants is not easily circumvented in practice given the cost, intense regulatory oversight, and need for chronic care. Therefore, no legal work-around has been found to help this child receive a transplant.

Because of the current legal framework, clinicians are left to straddle the ethical fence between doing what is right for the patient and working within the law. Because most clinicians will strive to provide the optimal care, they feel an ethical duty and moral obligation to look for loopholes in the legal system to enable the provision of necessary treatment.²⁴  Academic health centers in the southwest of the United States have faced this problem and developed unique solutions. At The University of New Mexico, reduced cost services, free clinics, and payment plan options have been developed to help bring necessary medical care to undocumented immigrants.²⁵  However, in many institutions, there are no systems in place, and resource allocation is affected by individual clinician advocacy. This can be ethically problematic if it leads to sporadic resource allocation for some and not for others. Hospitals should have open and nonpunitive discussions regarding caring for undocumented immigrants as well as meaningful policies in place to help clinicians navigate these ethical challenges so that optimal care can be provided to patients.²⁶ 

In our patient, the burden of chronic hemodialysis and numerous hospitalizations has resulted in a significant financial burden on the state-provided insurance, which would be alleviated by transplant. In addition, after the intense postoperative period, this child would be able to return to school full-time (therefore improving his developmental outcome) and allow his parent to obtain employment, which would give back to the system through income and sales tax revenue.

In 2019, 449 children <10 years of age awaited kidney transplant in the United States. Of these, 418 were US citizens, and 4 were undocumented residents. In 2018, 1048 children ≤10 years of age received solid organ transplants, compared with 13 undocumented residents. In this case, we raise challenging ethical questions. (1) Should documentation status preclude children from access to transplant in the United States? (2) Should children get special priority (irrespective of documentation) compared with older candidates? (3) Should future ability to pay for immunosuppression be considered in transplant listing decisions? We consider these issues below.

Intuitively, it may seem that a naturally scarce resource, such as organs, should be reserved for members of American society who are in need and could benefit. This begs the question: should undocumented children be considered members of American society for the purposes of transplant? We argue for the inclusion of undocumented children on the grounds that access to transplant is a benefit owed as a matter of reciprocity and, second, that undocumented immigrants are rooted, contributing members of the community and, as all members, are entitled to have their health protected, especially children.²⁷  On the basis of notions of fairness and requirements of justice, we argue that undocumented children with ESKD should have access to transplant in the United States. We then consider briefly rationing transplant on the basis of (in)ability to pay.

Many noncitizens participate in the transplant system as donors. Between 2012 and 2013, 3.3% organs from deceased donors came from undocumented immigrants, most of which were transplanted into US citizens.^7,13  The principle of reciprocity requires that if undocumented immigrants contribute to the donor pool and are not temporary members (ie, tourists), they should have access to the transplant system. It seems unjust, exploitative, and objectifying for a system to use organs from a group of persons categorically excluded from access. Participation as organ donors and long-term residence in the United States also means that undocumented immigrants are not considered “transplant tourists” under the definition of the Declaration of Istanbul.²⁸ 

Protecting health, including access to transplant, contributes to protecting fair equality of opportunity: the opportunity for people to grow and develop and make and revise their life plans.²⁹  Although Rawls’ contractarian view of social justice typically is applied to “free and equal citizens” of a society, it is unclear whether Rawls’ meant “citizens” literally or, rather, as he describes, all those who “engage in fair terms of cooperation.”³⁰  Although a literal interpretation would exclude undocumented immigrants, the spirit of his account includes undocumented immigrants who contribute as members of the society by virtue of donating to the organ pool and participating in complex schemes of social cooperation (through sustained social ties, participation in community organizations, paid and unpaid labor, taxes, etc).³¹  Although citizenship demarcates important rights such as voting and political participation, many aspects of social justice, including access to health care, require the same treatment of all members irrespective of citizenship. This is especially true for children, who have little say over their location and citizenship and whose identity, participation, and life prospects are largely shaped by their location and access to health care.

The difference principle, sometimes referred to as the “maximin” principle, is also used to support granting access to transplant for undocumented children because they are often the most vulnerable members of society. In addition to disproportionate disadvantages faced by children with ESKD (eg, lower quality of life during development, risk of premature death, etc), undocumented immigrants face unique challenges that compound this, including language barriers, often lower socioeconomic status, and access to fewer safety net resources.

Numerous ethical principles are used to justify special priority for children, including noncitizens. In the prudential life span account, it is dictated that resources be allocated such that they are invested across one’s life with the goal to “make a life go as well as possible.”^32,33  Depriving undocumented immigrant children access to transplants significantly impairs their ability to live a functional life, pursue and revise their plans of life, and participate in society (through school attendance, social participation, work, etc). Long-term consequences of ESKD include growth impairment and cognitive delays in motor, language, and psychosocial development.³⁴  ESKD during childhood can exacerbate comorbidities, such as cardiovascular disease, further impairing growth and development. Kidney transplant can be used to correct ESKD’s harmful effects on the maturing brain and resolve malnutrition,^35,36  conditions with dire lifelong consequences if unaddressed. Compared to dialysis, transplant affords children better quality of life, including regular school attendance and social participation and prevents growth deficits and delayed puberty.^37–40  Given these time-limited opportunities to benefit from transplant and the human capital gains, society should preferentially allocate resources to children, irrespective of documentation, to maximize the potential for these children to lead a healthy and productive life and preserve their fair equality of opportunity.

Although distributive justice and medical indications are used to support listing this patient for transplant, the patient’s insurance will not provide coverage for transplant services. Costs related to transplant are significant, as are consequences for lack of coverage. The average costs to Medicare for pediatric kidney transplants for children <10 exceeded $120 000 in the first year and ∼$30 000 in the second year.⁴¹  Although transplants are a public good that should be available to all, insurance and wealth have become preconditions for transplant, with many centers requiring >$200 000 in savings to list patients for transplant without adequate insurance.

Centers must consider implications for potential graft loss, hospitalization, and need for retransplant among recipients who cannot afford immunosuppression. These cases are devasting for the patients who require a second lifesaving transplant, the center whose status is jeopardized by poor outcomes, and other candidates deprived of a lifesaving organ. The ability to pay (through insurance) increases the likelihood of a successful transplant and graft survival. Although the likelihood of success is a legitimate criterion for allocating scarce organs, undocumented status itself does not preclude insurance coverage, although it likely creates a short-term impediment. Moreover, given the lack of universal coverage in the United States, even current insurance is not a guarantee of future coverage.

Several options exist to remediate the lack of state-subsidized insurance in this case. First, hospitals often have a philanthropic fund that can be drawn on to support uninsured patients, at least in the short-to-medium term. Other charities also exist to support immunosuppression costs for children. Second, undocumented immigrants included under Deferred Action for Childhood Arrivals have access to care in some states, and it is possible that the child and his parents could relocate. Third, the family could petition for asylum status. Finally, future parental employment may offer insurance that covers the child medical costs.

In this case, important questions are raised about the ethical grounds for listing undocumented immigrants and uninsured patients for transplant. Although significant challenges are posed in the case, it also clarifies that systematically excluding the poor, the vulnerable, and those who lack documentation (all groups that contribute to the donor pool) is fundamentally unfair.

In this case, we highlight some fundamental issues, and we are required to unpack our ethical assumptions about who deserves or does not deserve lifesaving treatment. A fundamental principle of medical ethics goes back to the Hippocratic Oath: doctors have an obligation to take care of the sick, regardless of their nationality, criminality, age, sex, political beliefs, moral values, sexual preferences, or ability to pay. The obligation comes from the belief that our knowledge and skills as healers are a public good. We are the carriers of that public good. We do not own it, and we do not have the right to decide who is or is not worthy of benefitting from it. As doctors, we need to advocate for our individual patients, especially when those patients cannot advocate for themselves. So, as our commenters noted, the ethical answer to this dilemma is clear. When we are caring for a patient, our ethical duty is to advocate for the best treatment of that patient.

CMS

Children’s Medical Services

ED

emergency department

ESKD

end-stage kidney disease

FSGS

focal segmental glomerulosclerosis