Cancer Care for All? Tales of Caring for Undocumented Patients with Cancer

Short abstract

This commentary describes the barriers undocumented immigrants to the United States face when trying to access health care and highlights the downstream consequences of these barriers on the health system and on health care providers.

We often hear the adage, “The United States is a nation built by immigrants.” This is true for many of us who migrated to this country with the hope of finding better opportunities—and in our particular case, the ambition to practice medicine. Starting in the 16th century, the U.S. saw large migration waves from Europe and other parts of the world. Except for those with a Native American background, most residents of this country are descended from immigrants.

As of 2017, there were a total of 44.5 million foreign‐born immigrants living in the U.S., composing 13.6% of the U.S. population 1. Approximately 11.2 million of these people are estimated to be undocumented 1. The largest group of immigrants living in the U.S. are Hispanic/Latinx, accounting for 44.3% of the immigrant population, followed by origin groups from China, India, and the Philippines 1.

Despite their many contributions to society, undocumented immigrants often do not receive many of the country's social benefits, and many U.S. citizens remain unaware of the degree to which this population contributes to society. Immigrants’ influence on U.S. culture ranges from cuisine to artistry. They are also a significant part of the work force, being employed both in high‐paying jobs and as irreplaceable farm workers 1. Records show that immigrants contributed approximately 16 million U.S.‐born children as of 2017, representing almost one quarter of the nation's children 2. Despite common beliefs, immigrants also contribute to the country's economy, as 50% to 75% of unauthorized immigrants pay federal, state, and local taxes 3. Despite these contributions, they often face many challenges in their ability to obtain lawful immigration status, benefits, and health care.

Undocumented immigrants are frequently of lower socioeconomic status and often form part of the nation's racial and ethnic minority populations. Because major databases do not include information such as country of origin or documentation status 4, the exact prevalence or incidence of cancer in undocumented immigrants in the U.S. is unknown; however, data from those with lower socioeconomic status and ethnic minorities can be cautiously extrapolated 5, 6. As described previously, lower socioeconomic status is associated with health disadvantages and higher mortality rates 7 due to differences in exposures and to lack of access to cancer prevention, early detection, and treatments. Men below the poverty level have an 80% higher cancer mortality rate compared with men with incomes ≥600% of the poverty level. The difference in cancer mortality for women is present but less marked than that in men 8.

Disparities in oncological care affecting minority populations are well documented 9. Asian American and Pacific Islander women have lower rates of breast and colon cancer screening compared with other racial and ethnic groups 10, 11. Hispanic women have the highest cervical cancer incidence rates in the U.S., one that is 64% higher than that of non‐Hispanic white women 12. Gastric cancer incidence rates are at least 70% higher in Hispanic men than in non‐Hispanic white men and more than double for Hispanic women than non‐Hispanic white women 10. Hispanic patients are also diagnosed with gastric cancer at a younger age and at more advanced stages of disease compared with non‐Hispanic whites 13.

In 2014, the Affordable Care Act (ACA) was implemented as an attempt to improve health insurance coverage both for the U.S. born and for lawful immigrants. However, none of the estimated 11.2 million undocumented immigrants are eligible for health insurance under ACA 14. A small percentage of undocumented patients can retain insurance with high out‐of‐pocket expenses but have no other options for health care insurance. Furthermore, although most nonelderly undocumented immigrants live in a family with a full‐time worker, their access to employer‐sponsored coverage may be limited because they are often employed in low‐wage jobs and in industries that are less likely to provide health insurance coverage 14. Migrant workers in particular typically work rigorous hours, often exceeding 60 hours per week. Despite sacrificing their health by devoting their lives to such arduous labor, they are abandoned by their employers in times of need for lack of health care insurance. Companies are not obligated to offer health insurance to undocumented workers, which means that in the case of millions of undocumented individuals, hard work and dedication do not guarantee the privilege of health care.

Health insurance coverage is closely linked to the time it takes to seek medical care. It is known that uninsured patients are more likely to postpone or forgo care 15 and are also less likely to undergo cancer screening, putting them at higher risk of being diagnosed at a more advanced stage of disease 16, 17. Additionally, uninsured black, Hispanic, and low‐income patients are less likely than white and insured patients to receive recommended care, including age‐appropriate cancer screening 18. Moreover, the difference in cancer outcomes is affected not only by the delays in obtaining care due to lack of access but also by the lower quality of services some in this underprivileged population may receive. For example, compared with white women, black, Hispanic, and Mexican women under the age of 70 undergoing breast‐conserving surgery were less likely to be offered or to receive radiation therapy 19.

During our journey as Latina physicians, we have both encountered many scenarios in which undocumented patients have been diagnosed with lethal diseases like cancer. We have experienced firsthand the frustrations of trying to find resources for patients for whom many questions regarding their care remain unanswered at the time of discharge, despite the efforts of social workers, case managers, physicians, and families.

We share one example from Dr. Olazagasti of how the obstacles facing physicians treating undocumented patients can result in poor outcomes for the patient and low morale for the physician:

A 44‐year‐old woman presented to the hospital with fever, anemia, and thrombocytopenia and was later diagnosed with severe aplastic anemia. She was born in Peru and had illegally immigrated to the U.S. 10 years prior. She was treated in the inpatient setting with the standard of care—anti‐thymocyte globulin and cyclosporine—but unfortunately, her disease did not respond to this combination regimen. Patients who do not respond are typically referred at this point for bone marrow transplant. Unfortunately, given her undocumented status, she was not a candidate for this life‐saving procedure. She subsequently had multiple complications requiring multiple month‐long hospitalizations, mostly because she was unable to receive the optimal treatment in the outpatient setting due to her immigration status. Her only treatment option was to continue a regimen that had not worked and biweekly appointments for transfusions at our center or switch to best supportive care. Caring for this patient was challenging in many ways. I often had sleepless nights due to frustration and concerns as I witnessed, powerlessly, her health and quality of life deteriorating. I often felt helpless, as the solution to her disease was out of my control and I could not do right by her.

This real‐life story is one of many examples highlighting the disparities our undocumented population face when accessing health care. Disparities in care can affect health care workers as much as patients themselves. Physicians swear by the Hippocratic Oath to “do no harm,” but in real life we are sometimes required to provide unequal care to our undocumented patients. This can make us feel like we are failing our patients which can result in low morale and/or burnout.

Health disparities can also cause a significant negative impact in the overall health care system. Due to the lack of routine and outpatient health care resources, undocumented individuals are forced to seek medical care in the emergency room. In 1986, the Emergency Medical Treatment and Active Labor Act (EMTALA) was designed to provide patients access to emergency medical care regardless of the ability to pay 20. With EMTALA, undocumented immigrants can qualify for Medicaid coverage for emergency care, and patients are entitled to receive treatment until deemed stable. This comes at high costs to the U.S. health care system, as emergency care consumes a large amount of publicly funded services and drains existing resources.

It is imperative to strengthen tools that aim to close the gap between the care received by undocumented individuals and that by the general U.S.‐born population. In an ideal world, new policies would be implemented to address the issue of access for undocumented populations. Instead, our plea is to strengthen the already established health systems and seek to provide coverage, access, and resources for our undocumented immigrants. Routine access to outpatient clinics to address nonemergent issues, as well as screening and prevention tools, should be a national option for this underserved population. Access to health care should be universal and consistent, not discriminatory based on immigration status.

Practicing medicine in the U.S. as Latinas and witnessing the disparities in health care that undocumented patients experience can be heartbreaking. Many of us can identify with this population because of our own backgrounds and stories. At the same time, we have the opportunity and responsibility to be advocates for immigrants and to share their stories. Our hope is that spreading awareness of the discrepancies and discriminations toward immigrants that takes place in the U.S. is the first step in change. It is time to practice equality and provide cancer care for all.

Disclosures

Narjust Duma: AstraZeneca, Inivata, Inc. (C/A). Coral Olazagasti indicated no financial relationships.

(C/A) Consulting/advisory relationship; (RF) Research funding; (E) Employment; (ET) Expert testimony; (H) Honoraria received; (OI) Ownership interests; (IP) Intellectual property rights/inventor/patent holder; (SAB) Scientific advisory board