HESP June 3, 2018

“Who deserves hemodialysis today?”

(Raghavan, 2017, p. 488)

Undocumented immigrants who suffer from kidney disease are a stigmatized people suffering from a stigmatized illness. The patchwork of treatments offered by each state is wasteful and inefficient, and government policies often put unnecessary stress on state and community healthcare systems. There are clear financial and humanitarian advantages to treating these people in a dignified and medically sound way. However, major policy and perception changes would be needed in order for these changes to be implemented.

According to the United States Renal Data System, chronic kidney disease (CKD) is an important concern for national health policy makers. Moreover, while only a small number of patients with CKD progress to end stage kidney disease (ESRD), these patients constitute a substantial percentage of yearly healthcare spending. Patients with ESRD require renal replacement therapy, of which there are four different types: in-clinic hemodialysis, home hemodialysis, home peritoneal dialysis, and kidney transplant. Kidney transplant provides the best patient outcomes with the best quality of life, and, when successful, is the most financially viable.[1]

All states should offer undocumented immigrants with CKD, who can prove long-term residence, subsidized buy-in to private health insurance so they are able pay into the system and local healthcare providers can receive reimbursements for providing care.

The United States lacks a unifying policy for dealing with chronic illness or health complications. This creates a multitude of issues for physicians and clinics trying to provide adequate and cost effective care. The United States does not guarantee a right to the highest attainable standard of health to its citizens in all cases (Hamel et al., 2015, p.2558). While generally, no one can be turned away at the hospital in a true emergency or during active labor, hospitals are not obliged to provide palliative, preventative, or recuperative care for people who are uninsured or who cannot pay (EMTALA, 1986). Farmer writes that, “Finding equitable ways to finance healthcare, including the treatment of catastrophic illness, is the main challenge for both medicine and public health, along with weaving, or restitching, the safety nets that might protect families from death or disability and the financial ruin that accompanies serious illness” (Farmer, 2015).

Undocumented immigrants occupy an enormous space in the American healthcare policy debate. Their situation is a lightning rod for both sides of the political spectrum. Moreover, EMTALA has some exceptions that state that certain ‘aliens’ are excluded, and payments “‘shall be made’ if ‘such care and services are necessary for the treatment of an emergency medical condition of the alien,’ and ‘such care and services are not related to an organ transplant procedure’” (Rodriguez, 2015, p. 61). In this context, an undocumented immigrant’s situation becomes even more complex and volatile. These people live in constant fear of being deported or taken into custody and are often distrustful of government systems in general (Reghavan, 2017, p. 448; Holmes, 2013, p.36). Their situation is one of ‘conjugated oppression’,[2] in which “ethnicity and class work together to produce an oppression experientially and materially different from that produced by either alone” (Holmes, 2013, p. 49). Thus, their situation needs to be examined not only biologically, but also in regards to the social, structural, and symbolic violence that impacts their daily life.

It is estimated that approximately 6500 undocumented individuals are dialysis dependent in the United States (Raghavan, 2017, p.488; Rodriguez, 2015 p. 61). Approximately 30-50% of these people receive emergency dialysis only in life threatening situations (Raghavan, 2017, p.488). The result is “increased cost for hospital systems, reduced quality of life for patients, and daily ethical dilemmas for providers forced to determine ‘who deserves hemodialysis today?’” (Raghavan, 2017, p. 488).

In general, “undocumented uninsured patients obtain basic care at Federally Qualified Health Centers or safety net hospital systems, which provide care regardless of citizenship or ability to pay” (Raghavan, 2017, p. 448). However, this care is not guaranteed in all states because “the language of the Medicaid Act left room for interpretation that explains the current situation with divergent dialysis treatment strategies in many states” (Rodriquez, 2015, 62; Rodriquez et al., 2012, p.335). States have been allowed to enact wasteful and inhumane policies that one judge described as ‘medical Russian Roulette’ (Rodriquez, 2015, 62).

The American healthcare system is daunting for most people who pass through it, especially those who are uninsured (Chesleigh, 2004, p. 1). For undocumented individuals, this system becomes a stressful and terrifying machine, which is a great source of personal shame (Holmes, 2013, p. 37). The system is highly complex, with each state having different laws and programs. Many Americans view undocumented immigrants as taking up resources that citizens have paid for. In reality, “fiscally, >50% of employed undocumented immigrants pay income taxes and 100% pay sales tax” (Reghavan, 2017, p. 489). These people contribute an “estimated $15 billion to Social Security” and only use $1 billion (Raghavan, 2017, p. 489). Rodriguez estimates that providing dialysis to the 65000 undocumented immigrant patients with ESRD would cost approximately $260 million (2015, p. 61). He notes it is important to put that number in context of the Social Security ‘earnings suspense file’, which in 2015 grew more than $50 billion (Rodriguez, 2105, 61). While Obama-care has allowed some undocumented people to become insured, “much of the healthcare for undocumented immigrants with chronic diseases is of poor quality and unreimbursed” (Raghavan, 2017, p. 489).

In Fresh Fruit, Broken Bodies, Holmes (2013) paints a grim picture of an uninterested and callous healthcare system that is resentful about having to assist migrant or undocumented people. Medicines are often dispensed incorrectly, and there is little option for recourse (Holmes, 2013, p.37). The barriers to healthcare experienced by these people all revolve around their situation of conjugated oppression. An unhappy intersection between race and class means that immigration policy, health system bureaucracy and discrimination, and individual concerns all act as barriers to seeking care (Raghavan, 2017, p. 489). The situation is not getting better. Recent policy moves by the Trump administration could steer “hospital systems and physicians into acting as agents to enforce immigration” (Raghavan, 2017, p. 490). It is imperative to find new and meaningful ways to address these issues, not just because the treatment of these people is inhumane, but also because it is wasteful and puts undue strain on local economies and communities.

For example, Grady Hospital provided uncompensated care for patients “until doing so became financially unsustainable” (Rodriguez et al., 2012, p. 335). Per the New York Times in two investigative articles in 2009, when Grady closed the dialysis unit, which was almost solely utilized by undocumented patients and thus not entitled to any federal funding, the clinic provided some patients with three months of free dialysis (after a lawsuit), but many chose to return to their country of origin, incentivized by plane tickets, cash offers, prepaid dialysis treatments, and offers to help find insurance providers. Grady Hospital had been serving Atlanta’s poor for 117 years, and the hospital absorbed the additional cost of treating illegal immigrants with ESRD via in-center dialysis three times a week. Eventually, Grady had to stop the program because they felt they were no longer financially able to support it, while still providing care to the city’s indigent. When the clinic closed the chairman declared, “people are not going to die on the street because of these actions” (Sack, 2009, nytimes.com), but many of the patients repatriated to their home countries died soon after they arrived home (Sack, 2009, nytimes.com). The hospital staff is quoted as saying, “If we don’t make the gut-wrenching decisions now, there won’t be a Grady later. Then, everyone loses”, and commenting that somehow the people who the government had decided were ‘not their problem’ had “become Grady’s problem, which seems totally unfair” (Sack, 2009, nytimes.com). More recently, the practice of medical repatriation has raised major concerns as the practice is thought to violate US and international law (Rodriguez, 2015, p.63). This example clearly suggests that an undue burden is being placed on local communities and healthcare workers as a result of the federal government’s unwillingness to accept the realities of undocumented immigration in America.

One woman who stayed in America eventually was forced to seek emergency medical care and was quoted in the Times as saying, “They said this was the first and last time they would help me…They told me I didn’t have any right to be there” (Sack, 2009, nytimes.com). She bounced from hospital to hospital and eventually agreed to travel home. It is clear that stakeholders are “not willing or able to provide uncompensated care to this population” (Rodriguez, 2015, p. 335). The current situation often presents both providers and patients with impossible choices.

Providers often feel that the law is preventing them from providing appropriate treatment to vulnerable patients (Rodriguez, 2015, p. 335). Undocumented people are stigmatized because of their racial and social status. ESRD and CKD are both chronic illnesses that are accompanied by stigma within both the undocumented community and the wider community. People who suffer from this disease are seen as a burden on the system because they cannot pay and often feel ashamed because they cannot work.

Hispanic patients are at an increased risk of CKD, and the class status of undocumented immigrants limits early diagnosis and treatment resulting in progression to ESRD (Hurley et al., 2009, p. 941). ESRD is associated with increased rates of depression (Gonzalez, 2013, 485). Treatment schedules for ESRD often means that undocumented patients are forced to quit work, and one study found that while 90% of patients were employed before receiving emergency care only 14% were able to continue working during treatment (Cervantes et al., 2018, p. 193). Patients also reported substantial anxiety over the possibility of death (Cervantes et al., 2018, p. 193).

States are able to choose what constitutes an emergency, and federal law does not explicitly block preventative dialysis treatment (Cervantes et al., 2018, p. 193-4). As a result of stigmatization and discrimination, undocumented immigrants are often forced to seek primary care in emergency rooms, and the healthcare system must support them from emergency to emergency. Thus, undocumented immigrants present later in their disease “without the potential cost-saving benefit of pre-ESRD care” (Hurley et al, 2009, p. 941). Pre-ESRD care, such as treatment of hypertension, can slow or prevent the progression of CKD. Every year that someone is kept off chronic outpatient dialysis saves the state up to $80,000 (Linden et al, 2012, p. 358). Emergent hemodialysis patients spend more time in emergency care, and the patient will die much more quickly (Cervantes et al., 2018, p.191). Thus, it makes sense for states to allow patients to buy into insurance programs in order to utilize preventative care.

Misallocated treatments, that is, “spending on care that is not clinically valuable or not spending on preventive services” is identified as a clear cause of waste in medical care (Cutler, 2018, 494). In fact, failures of care delivery were estimated to account between $102 billion and $154 billion in wasteful spending in 2011 (Berwick, Hackbarth, 2012, p.1513). Administrative waste is also a huge drain on the American heath care system, (Cutler, 2018, p. 494; Berwik, Hackbarth, 2012, p.1514). Undocumented people do not qualify for Medicare, even though they pay directly into social security and other social funds via their employers (Raghavan, 2017, p. 489). More than 30% of undocumented immigrants with chronic kidney failure are thought to receive emergent hemodialysis in life threatening situations (Raghavan, 2017, p. 489). Patients receiving this type of treatment are known as ‘super utilizers’, as their costs to local healthcare systems are so high (Raghavan, 2017, p. 489). States like Texas use these patients in order to take advantage of Medicaid repayments for emergency care (Rodriguez et al., 2012, p. 335). In light of this, some states have opted to support undocumented immigrants receiving nonemergent dialysis through Medicaid or other local resources because it is more cost effective (Raghavan, 2017, p. 489). There is substantial support in the literature for allowing undocumented immigrants to purchase employer-based insurance coverage and access to Medicaid (Raghavan, 2017; Ortega, 2009). These steps are viewed as both more humane and cost effective. The complex, patchwork nature of the different types of care made available to undocumented immigrants is wasteful on both a medical and administrative level. If undocumented patients were able to purchase insurance through subsidized programs, a substantial amount of waste would be reduced. These problems could be rectified and make a noticeable difference to costs in a relatively short space of time, as some states have already shown.

Federal law requires all people be treated in an emergency or while in active labor regardless of an individual’s race, immigration status, or ability to pay (EMTALA). This means that, by law, physicians and hospitals are obliged to treat undocumented patients only if they present with acute, life threatening complications of ESRD, even though preventative measures could be administered at lower human and financial cost. Treatment of renal disease is part of the “patchwork of illogical policies” (Ortega, 2009, p.186) that applies to chronic and non-emergency medical issues in the United States. However, Medicaid covers ESRD for US citizens, so it offers us an informative example for analysis. It is interesting to note, “dialysis stakeholders such as large dialysis organizations, have not objected to providing dialysis to undocumented immigrants when sources of reimbursement are available” (Rodriguez, 2015, p.60), but there are also inherent conflicts among these groups (Rodriguez et al., 2012, p.335). Some states offer chronic outpatient dialysis to undocumented immigrants (for example California and New Mexico), while others depend on emergent dialysis (Texas) (Rodriguez, 2015, p.60; Raghavan, 2017, p. 489). In Texas, this system results in patients receiving ‘compassionate dialysis’ which basically means sporadic treatment is provided when the patient presents with life threatening symptoms (Rodriguez, 2015, p.60). Emergent dialysis in Houston is reported to cost 3.7 times more than outpatient treatment (Rodriguez, 2015, p.61). Decisions on what type of care is provided and when to provide treatment is politically charged and creates ethical issues for hospital staff, while also exposing the hospital itself to legal action (Rodriguez, 2015, p.62).

There are some viable renal replacement programs for undocumented patients already in place within the United States. There is, however, still much work to be done. Even in states where transplant and dialysis are offered to undocumented patients, physicians are often faced with difficult choices, as expensive drugs necessary for successful treatment are not covered. As part of my research for this paper, I have interviewed Dr. Antonia Harford, from the New Mexico School of Medicine about her work with undocumented transplant and dialysis patients.[3] Dr. Harford identified major ethical issues that physicians are faced with as a result of discriminatory health policies. She recommended that patient and physician provider groups be more involved in advocating for medical insurance and drug coverage for undocumented patients.

Within the United States, there is a reluctance to accept that undocumented residents are already in the country and functioning in the society (Raghavan, 2017, p. 491). This means that policy is often centered on trying to keep people out, and fails to take into account the burden that these laws put on both the people already in country and the health systems they rely on. By refusing to allow undocumented people to buy into the private health system at a subsidized rate, the government is forced to care for them from emergency to emergency. This places enormous strain on the healthcare system and the people themselves. People who are suffering from kidney disease can be appropriately cared for in a fiscally responsible way. However, the refusal to acknowledge the humanity of undocumented immigrants has lead to wasteful policies in general and a lack of consensus within nephrology organizations (Raghavan, 2017, p. 492). Nonetheless, the International Society of Nephrology has identified kidney disease as a “model for monitoring progress and eventually achieving Universal health Coverage” (Raghavan, 2017, p. 492). “Medicare covers most long-term dialysis care for US citizens with ESRD” (Hurley et al., 2009, p. 941), and this program, one of the only examples of national healthcare coverage in the US, functions reasonably well (usrds.org). However, while estimates are available, the actual number of undocumented immigrants suffering from ESRD is entirely unclear, which also means the cost is poorly understood (Hurley et al., 2009, p. 941; Raghavan, 2017, p.489).[4] However, all the available information suggests avoiding emergency dialysis is a cost and life saving solution. Cervantes et al put it succinctly in their conclusion: “Undocumented immigrants with end-stage renal disease treated with emergency-only hemodialysis have higher mortality and spend more days in the hospital than those receiving standard hemodialysis. States and cities should consider offering standard hemodialysis to undocumented immigrants” (Cevantes et al., 2017, p. 188).

Regular hemodialysis is an important first step, but if states were willing to offer buy-in to private healthcare for undocumented resident transplant should also be considered. Illinois was the first state to allow undocumented immigrants to be listed for kidney transplant (Raghavan, 2018, p. 490). Considering the literature available on undocumented immigrants is relatively scarce, studies suggest that those with ESRD may be “idea candidates for transplant” as they are younger, healthier, often employed or intending to resume work if possible, and have close knit family groups who may be willing to act as donors (Rodriguez et al., 2012, 335). Multiple studies suggest that transplant is the preferable option for undocumented patients.[5] In a small study, Linden et al. argue “policy makers should consider covering the cost of living donor transplant for undocumented immigrants” (2012, p. 359). Their study supports the hypothesis that the population suffering from ESRD is demographically similar to the rest of the undocumented immigrant population (Rodriguez et al., 2012, p. 335). They are younger and healthier than other dialysis patients (Linden et al; Rodriguez et al, 2012, p. 335-6), and 60% could have access to a living donor (Linden et al., 2012, p. 356). There is little to no evidence to suggest that offering dialysis or transplant to patients has increased migration (Raghavan, 2017, p. 489), although this is often one rationale offered by conservative pundits as an explanation for extraordinarily wasteful policies (foxbusiness.com, 2018). In California, providing chronic outpatient dialysis for resident undocumented patients has not increased immigration (Raghavan, 2018, p. 489). Moreover, in New York “only 4% of patients were aware of their kidney disease before immigration” (Rodriguez, 2015, p. 62). My interview with Dr. Harford also supported this argument.

The people who are suffering from ESRD, and who are undocumented, are stigmatized by their class and race, as well as by their chronic condition. Their illness, especially if they are treated through emergent hemodialysis, represents an “embodiment” of the structural violence that is perpetuated against them through discriminatory health policy.[6] Many of the federal and state laws that stop resident undocumented immigrants from receiving dialysis or transplants, or being able to enroll in private healthcare are wasteful. Transplant and regular dialysis should be available to these patients. These options could be made viable by allowing undocumented people suffering from ESRD eligible for subsidized health insurance.

Many authors in the literature have noted that it seems that political and ideological motivations have negatively impacted policy regarding ESRD in undocumented patients. By excluding undocumented residents who suffer from ESRD or CKD from the ability to purchase healthcare, state governments are placing an undue financial and ethical burden on local providers. While progress in these issues seems impossible in the current political climate, it is important that physicians, patient advocates, and community stakeholders continue to try to speak up and point out the wasteful nature of these ideological policies. While this group is relatively small, there is a chance to save a huge amount of money and also end great human suffering by initiating change. ESRD is a positive example of the way the United States could deal with other chronic illnesses as it moves towards more universal healthcare coverage for everyone within its borders. However, in order to be both ethically and fiscally responsible, policy makers will have to acknowledge the reality of undocumented immigrants within the United States.

“But even weeks after being at home among family and loved ones, I continued to feel humiliation and guilt over my inability to behave as a contributing—paying—member of hospital society. I felt I had been exposed as unworthy—a fraud, a leper…I find myself hoping we will eventually find a way to ensure that every human being who becomes ill or suffers injury has the opportunity to receive appropriate medical attention, notwithstanding financial ability—without having to feel stigmatized and humiliated in the process.” Chesleigh (1)

Suggest a Correction

 

This article is part one of our series on public health.

[1] The information in this paragraph was taken from the USRDS website, please see works cited

[2] Conjugated Oppression coined by Philippe Bourgois as defined by Holmes in Fresh Fruit, Broken Bodies

[3] The full interview transcript is available in the article An Interview With Dr. Antonia Harford (please note Dr. Harford is the author’s aunt).

[4] Much of the literature identifies the unquantifiability of the problem, this is exacerbated as undocumented patients are not included in the USRDS

[5] For example see Shen et al., 2018; Linden et al., 2012

[6] Krieger defines embodiment as “how we literally embody, biologically, out lived experience, in societal and ecological context” (2014, p. 49)

 

Works Cited

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Chesleigh, F. (2004). Uninsured, Unwanted, Unworthy? The Hastings Center Report, 34(1), 0_3.CMS.gov

Centers for Medicare and Medicaid Services Website. Retrieved from https://www.cms.gov/

Cervantes, L., Tuot, D., Raghavan, R., Linas, S., Zoucha, J., Sweeney, L., . . . Powe, N. (n.d.). Association of Emergency-Only vs Standard Hemodialysis With Mortality and Health Care Use Among Undocumented Immigrants With End-stage Renal Disease. JAMA Internal Medicine, JAMA Internal Medicine.

Cutler, D. (2018). PERSPECTIVE: What Is The US Health Spending Problem? Health Affairs, 37(3), 493-497.

Emergency Medical Treatment and Active Labor Act. 1986. (2006). 296-299.

Farmer, P. (2015). Who Lives and Who Dies. London Review of Books37(3), 17-20. Retrieved from https://www.lrb.co.uk/v37/n03/paul-farmer/who-lives-and-who-dies.

Fernadez, Henry. (May 21, 2018) California would become ‘utopia’ for illegal immigrants with fee healthcare coverage: Orange County supervisor. Fox Business. Retrieved from https://www.foxbusiness.com/politics/california-would-become-utopia-for-illegal-immigrants-with-free-healthcare-coverage-orange-county-supervisor

Gonzalez, A., Siegel, J., Alvaro, E., & O’Brien, E. (2013). The Effect of Depression on Physician–Patient Communication Among Hispanic End-Stage Renal Disease Patients. Journal of Health Communication, 18(5), 1-13.

Hamel, Mary Beth, Ruger, Jennifer Prah, Ruger, Theodore W., & Annas, George J. (2015). The Elusive Right to Health Care under U.S. Law. The New England Journal of Medicine, 372(26), 2558-2563.

Hurley, Kempe, Crane, Davidson, Pratte, Linas, . . . Berl. (2009). Care of Undocumented Individuals With ESRD: A National Survey of US Nephrologists. American Journal of Kidney Diseases, 53(6), 940-949.

Holmes, S. (2013). Fresh fruit, broken bodies : Migrant farmworkers in the United States (California series in public anthropology ; 27). Berkeley: University of California Press. Kindle Edition.

Krieger, N. (2014). Got Theory? On the 21 st c. CE Rise of Explicit use of Epidemiologic Theories of Disease Distribution: A Review and Ecosocial Analysis. Current Epidemiology Reports, 1(1), 45-56

Linden, Cano, & Coritsidis. (2012). Kidney Transplantation in Undocumented Immigrants With ESRD: A Policy Whose Time Has Come? American Journal of Kidney Diseases, 60(3), 354-359.

Ortega, Adrianne. (2009). And Health Care For All: Immigrants in the Shadow of the Promise of Universal Health Care. American Journal of Law and Medicine, 35, 185-700.

Raghavan, R. (2018). Caring for Undocumented Immigrants With Kidney Disease. American Journal of Kidney Diseases, 71(4), 488-494.

Rodriguez, R. (2015). Dialysis for Undocumented Immigrants in the United States. Advances in Chronic Kidney Disease, 22(1), 60-65.

Rodriguez, Himmelfarb, & Hall. (2012). Tragic Options and Compromised Care: Undocumented Immigrants With ESRD. American Journal of Kidney Diseases, 60(3), 335-337.

Sack, Kevin. (Dec 31, 2009) For Sick Illegal Immigrants, No Relief Back Home. New York Times, Jan 1st 2010. Retrieved from https://www.nytimes.com/2009/11/21/health/policy/21grady.html?scp=1&sq=grady%20correll&st=cse

Sack, Kevin. (Nov 20, 2009) Hospital Falters as Refuge for Illegal Immigrants. New York Times, Nov 21st 2009. Retrieved from https://www.nytimes.com/2010/01/01/health/policy/01grady.html

United States Renal Data System. Retrieved from https://www.usrds.org/adrhighlights.aspx

 

 

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