This is part of an ongoing series that gives Bronx writers a chance to share their personal stories on the state of healthcare in America.
by Brielle Cardieri and Cindy Saenz
January 7, 2019
Healthcare and Immigrants
One of the most frustrating things about caring for patients is knowing that there are viable treatments available but that, because of your patient’s legal status, they cannot get access. Our patient doesn’t have the option of life-saving treatment. Here is her story.
Linda is our patient at the student-run free clinic at our medical school. The clinic serves patients who are uninsured and ineligible for insurance, the majority of whom are undocumented immigrants from Central and South America. Linda emigrated from Mexico twenty years ago to escape persecution and violence because of her sexual orientation but also to seek a better life living with her brother in New York City.
Linda came to our clinic with a variety of medical problems, the most significant of which is chronic kidney disease (CKD), a condition that causes the kidneys to lose their ability to remove waste products from the blood. As the disease progresses, the only two options to prevent death from kidney failure are dialysis or kidney transplantation. While the etiology of CKD is multifactorial, it is most commonly the result of long-standing uncontrolled diabetes and hypertension. Over the course of our time together, Linda has transitioned from living a fully independent life to relying on dialysis three days per week to keep her alive.
Linda’s story is deeply personal and unique, but the trajectories of her health and her life are intertwined with the social determinants into which she was born.
Linda left Mexico after experiencing violence because of her sexuality. When she came to this country, she relocated to East Harlem, partially to live in a neighborhood with other Mexican immigrants, but mostly because she could not afford to live anywhere else. In her twenty years here, she has been unable to access the legal job market, and therefore has had to work jobs for less than minimum wage. As is the case with others in her position, she is locked into poverty. Living in one of the worst food deserts in New York City with little money meant that Linda was forced to eat what she could find and afford. And, as is also the case with many low income patients, the limited food choices eventually led to the development of diabetes and hypertension. Undocumented and impoverished, she could control neither condition. Because she did not have the consistent healthcare which would have adjusted her medication and diet as her symptoms changed, she developed complications. Her conditions required monitoring by a primary care physician who would have kept track of the trajectory that governed her life. But such care is unavailable to poor immigrants living so close to the edge.
Unfortunately, by the time she came to our clinic, her uncontrolled diabetes and hypertension had already wrought havoc on her kidneys. She had suffered significant kidney damage and would likely require dialysis within a few years. Dialysis is a tremendous burden on quality of life: patients are required to go to a dialysis center three times per week, for three hours per session, until they pass away or are eligible for a kidney transplant. Depression rates among patients on dialysis are as high as 44%. But Linda’s situation is more dire and that is the heartbreak of treating her. For many patients, dialysis serves as a bridge to kidney transplantation: the dialysis machine acts as an artificial kidney for as long as patients need to wait for their name to reach the top of a kidney transplant list. For patients on dialysis, kidney transplantation is a pathway to a more independent life, without the constant trips to the dialysis center. Importantly, it also means a higher chance of survival. In data from the US Renal Data System, only about 34% of patients survive for 5 years after starting dialysis, compared to 75% of patients with kidney transplants. The number of patients awaiting kidney transplants in the United States is over 100,000. The wait time for a kidney is in the order of years. During that time, many get too sick to qualify; others die. Those are the statistics. But Linda cannot even get into the queue. She isn’t even a question mark. She will die.
For patients like Linda who do not meet residency requirements, the life-prolonging option of kidney transplantation is inaccessible. She is able to get dialysis care in New York because NY State grants emergency insurance via Medicaid to undocumented immigrants who are in immediate need of medical care. New York is one of only 3 states in which emergency Medicaid covers dialysis; however, it does not cover kidney or any other organ transplantations due to the cost of the procedure and follow-up costs associated with organ transplants, such as the need for long-term immunosuppression. The sad irony is that, while undocumented immigrants cannot receive organs because of insurance protocol, they can donate organs because the recipient’s insurance pays for the medical costs of the organ donor. It has been estimated that 3.3% of organs transplanted in this country come from non-citizens, given that many undocumented people choose to be organ donors despite knowing that they are not eligible to receive organs themselves.
Ironically, like those others in her position cited above, Linda is a registered organ donor who will give the gift of life to insured patients in need of organ transplants. Her other organs will help people despite the fact that this country will do nothing to prolong her life. The irony of our healthcare system is that immigrants who may not live long themselves give hope to those who, lucky enough to have legal residence, have the chance undocumented people are systematically denied. To put it bluntly, our current health system values a dead immigrant more than a live one.
While policies that deny coverage to undocumented Americans are presented as necessary fiscal decisions, the rules also represent a lack of regard for immigrants’ health and their lives. To deny necessary medical care is to assert that undocumented Americans do not have the same rights to life-changing and life-extending treatment that documented Americans do.
Linda’s story is a common one in our free clinic. Our patients have lifelong histories of compounding inequities, which our clinic attempts to address slowly and thoughtfully. We have integrated legal services into our clinical setting, increased access to mental health services, and partnered with our Human Rights Clinic to help eligible patients apply for asylum.
Because it is so painful to know that a patient you are treating doesn’t have a chance to live, we support the New York Health Act. It will provide universal, comprehensive and affordable healthcare to all New York residents, regardless of immigration status. We want to see all our patients get the care to which every human being is entitled.
Brielle Cardieri and Cindy Saenz are medical students at a major New York City teaching hospital.
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