Should Legal Status Determine Mortality? The Experience of Undocumented Individuals Denied a Curative Stem Cell Transplant Because of Uninsurance

The US foreign-born population reached a record 47.8 million in 2023 representing 14.3% of the US population.¹ This is the largest annual increase since 2000. In 2022, most immigrants (77%) were in the country legally while only 23% were undocumented immigrants (approximately 11 million individuals). Undocumented immigrants entered the country without legal permission or arrived on a nonpermanent visa and stayed after it expired. Some undocumented immigrants have legal permission to live and work in the USA and are temporarily protected from deportation. These programs, among many, include Temporary Protected Status (TPS), Deferred Action for Childhood Arrivals (DACA), and those with pending asylum applications. In 2023, immigrant households contributed $651.9 billion dollars in federal, state, and local taxes; $215.8 billion dollars in social security taxes; and $58.7 billion dollars in Medicare taxes.² Undocumented immigrant households paid $89.8 billion dollars in federal, state, and local taxes.

The legal status of immigrants has important implications for their health as well as access to employment, education, and public benefits. Laws and policies vary at the federal, state, and local levels; thus, there are living environments that are more or less welcoming with some states focused on the criminalization of undocumented immigrants while other states are focused on proactive inclusion policies.^3,4 Half of all undocumented immigrant adults report being uninsured compared to 18% of lawfully present immigrants and 8% of US-born citizens.⁵ Thus, undocumented immigrants are more likely to be uninsured in states with criminalization policies compared to more proactive inclusion states. As a result, undocumented immigrants have lower diagnosis and treatment of chronic diseases such as hyperlipidemia, hypertension, and diabetes.⁶ Lack of access to high-quality oncologic screening and care leads to a twofold increase in cancer mortality among undocumented immigrants compared to US-born citizens.⁷ Proactive inclusion states, such as California and Massachusetts, provide health insurance for undocumented immigrants through Medicaid expansion or Medicaid-like plans, thus allowing for access and receipt of both primary and complex subspecialty healthcare. For example, 20 states and the District of Columbia classify end-stage kidney disease (ESKD) as a Medicaid emergency condition allowing for access to standard hemodialysis instead of emergency intermittent hemodialysis which has a 14-fold higher mortality rate at 5 years for all patients and a 25-fold higher mortality rate for Latinx ESKD patients at 5 years.⁸ Access to insurance in five states allows for kidney transplantation for undocumented immigrants with ESKD.⁹

In this issue of JGIM, Ram and colleagues expand our understanding of the connection between immigration status and healthcare access.¹⁰ In a qualitative analysis, the authors explore the experiences of undocumented and uninsured immigrants who could not access stem cell transplant (SCT) for hematologic malignancy treatment. The study, conducted in 2021–2022, involved seven individuals from Mexico (n = 3), Venezuela (n = 2), Bolivia (n = 1), and Jamaica (n = 1) who had multiple myeloma, acute lymphoblastic leukemia, acute or chronic myeloid leukemia, or lymphoma. Their key finding was that, although many scenarios, emotions, and barriers encountered by the participants are shared among all patients with cancer, some are unique to the undocumented immigrant experience. Their difficult situation led to feelings of dehumanization when the lack of a social security number determined their insurance status which, effectively, determined their mortality. Patients who developed cancer prior to arrival in the USA expressed deep gratitude toward physicians, one of whom advocated for a detained patient to be released from a holding center at the border and transferred to a hospital for a higher level of care.

One particularly robust theme was the sense of pride in the work and taxes that undocumented immigrants contribute to the USA. This was coupled with an eagerness to complete the documentation process. Another theme, however, revealed how a debilitating cancer diagnosis can upend any legalization progress. Findings from Ram et al. that deserve special emphasis are the study participants’ experiences that echoed experiences of millions of individuals in the USA with cancer. Delayed diagnoses, social isolation, and the sense of being a burden to family and caregivers emerged as themes. However, one disturbingly universal experience was the development of illness-related financial toxicity. This included the inability to pay for treatment but also the inability to pay for basic needs like groceries or rent. The disability caused by illness and the time-consuming nature of cancer workup and treatment also limited participants’ ability to work and therefore earn income.

This study’s findings must be interpreted with consideration of some important limitations. The small study sample of seven patients restricts the ability to generalize the findings to the broader undocumented immigrant cancer population. Conversely, many of the experiences expressed by the study participants are shared by all cancer patients. This makes it difficult to precisely understand what experiences are unique to undocumented immigrants. Isolating this outcome could help consolidate advocacy efforts to a single issue whether that be expansion of sick leave and Family Medical Leave policies to undocumented immigrants, expansion of options for completing legalization tasks for undocumented immigrants with debilitating illness, or expansion of treatment coverage. At the same time, an undocumented study population with rare hematologic cancers who clinically qualify for a curative SCT serves to “concentrate” barriers faced by the general cancer population at the time of diagnosis and through the treatment and post-treatment periods of care. What is learned from studying this unique population could also lead to policy interventions that are generalizable to other undocumented individuals facing cancer.

Further, the authors highlight a pervasive public health issue in the USA: a cancer diagnosis is physically, psychologically, and financially toxic, which, for vulnerable patients, can result in physical, psychological, and financial devastation. Indeed, as many as 62% of patients go into debt because of their medical treatment and up to 45% do not adhere to treatment because of cost.¹¹ The U.S. Department of Health and Human Services and the Center for Disease Control and Prevention reported that between 2011 and 2016, patients living with cancer were more than twice as likely to spend over 20% of their household income on healthcare expenditures.¹² A study of over 4000 cancer survivors showed that one-third went into debt and 3% filed for bankruptcy because of their cancer diagnosis.¹³

In the USA, we have chosen—or continue to allow—a highly inefficient patchwork healthcare system with employer-based insurance as the backbone and safety nets for poor and sick individuals through Medicaid and older adults through Medicare. Healthcare exists within a system of relative scarcity. External scarcity in that every dollar spent in healthcare is an opportunity cost for the society or the patient.¹⁴ In our current system, patients facing serious illness often must choose between appropriate healthcare and other economic priorities like housing, food, or childcare. Internal scarcity refers to how limited resources must be apportioned across a range of people and priorities. In any healthcare system there will be limitations—there are limits to hospital beds, clinicians, and funds to support them. We have to determine how we will use those resources guided by the biomedical ethical principles of autonomy, beneficence, non-malfeasance, and justice. Autonomy is the right of patients to make informed decisions about their healthcare. Beneficence is acting in the best interests of the patient, often by sustaining life. Non-malfeasance is principle of not causing harm. Justice is fairness and equitable distribution of benefits and burdens. For US citizens, cancer treatment in the USA adheres to beneficence. Patients are able to access cutting-edge, lifesaving, or life-prolonging treatments. In the other areas, we are still working to live up to the principles that undergird biomedical ethics. Patients are often not aware of the full financial risks of their treatment; nor are they protected from financial harm, nor are the financial burdens of ill-health shared equally.¹⁵ Additionally, as Ram et al. demonstrate, non-citizens with hematologic malignancies do not even have the full benefit of beneficence, through access to BMT, the curative treatment for hematologic malignancies.

Clinical scenarios of moral distress as described by Ram and colleagues erode the moral standards of professionalism and integrity by which physicians provide clinical care. Clinical situations of “created” scarcity erode the trust and altruism that serve as the very foundation of the clinical provider-patient relationship. Indeed, studies have documented how distressing emergency dialysis policies have been to patient and physician well-being.¹⁶ Physicians and healthcare providers all deliver clinical care regardless of citizenship status. There is a moral misalignment between the obligations of a healthcare provider and the politics that structure our healthcare delivery system. While Ram and colleagues highlight the distinct injustice borne by undocumented individuals with hematologic malignancy who warrant a stem cell transplant, they also reiterate the general injustice of the American healthcare system which forsakes countless patients, citizens and non-citizens alike.

Declarations:

Conflict of Interest:

The authors declare that they do not have a conflict of interest.