With a smile on his face as he leaned toward the speakerphone, Jorge* said, “One friend of mine, he offered me a kidney if everything matches up. What would I need to do to find out if that will work?” My mind spun, trying to figure out what to say, as the translator relayed his message through a crackling phone connection. How do I tell a young man that he likely can’t access the standard treatment for his end stage kidney disease?
Jorge lives in the District of Columbia and is among thousands of immigrants in the U.S. with kidney failure. For these patients, finding medical care for kidney failure is difficult. Undocumented immigrants are not included in national data about renal disease and dialysis, so accurate numbers are not available, but one 2015 study estimated 6,500 patients in the same situation as Jorge. The recommended treatment for end state renal disease is dialysis several times a week to filter blood and replace the function of kidneys until the patient can ideally get a transplant.
As a nurse, I’m used to caring for people. I help my patients secure needed treatment and reduce barriers they may face. But as I explored how to solve this problem for Jorge, I realized the hard reality that there may not be a solution.
[Read: Realizing the Health Effects of Immigrant Kids Being Taken From Parents.]
The type of care available for immigrants with kidney failure who are not eligible for Medicaid varies by state in the U.S. In all states, hospitals provide medical care for any patient with a medical emergency, regardless of immigration status. A patient with untreated kidney failure would regularly build up so much fluid that their body swells and they have difficulty breathing. At that stage, only emergency dialysis administered in a hospital can stabilize them. These life-or-death emergencies are eligible for Medicaid reimbursement. A study in Houston, Texas, found that it was 3.7 times more expensive for the city per year to provide emergency dialysis versus regular outpatient dialysis. Some states recognized that treating these patients who have kidney failure every few weeks in the hospital was financially inefficient and terrible for patients. Those states have chosen to cover outpatient dialysis to reduce the burden of frequent hospitalizations for these patients with kidney failure.
Fortunately, the District of Columbia covers outpatient dialysis, and Jorge receives treatments three times a week. These treatments are the reason that Jorge is alive more than three years after he was diagnosed with kidney failure. But the burden of treatment is heavy. Jorge is in his 30s and wants to be productive and work. He can’t hold a full-time job and go to all his dialysis sessions. Each one is four hours, and he often feels dizzy and has symptoms of fluid buildup in his body. Demographic research has shown that undocumented immigrants with kidney failure tend to be younger than the U.S. population with the same condition. These young patients will be on dialysis longer than people who have the option of a kidney transplant. The majority of these patients attend dialysis indefinitely with no access to kidney transplants, destined to die early from kidney failure. Case-specific advocacy and news coverage has granted some people transplants with funds from foundations or private donors. While the transplant surgeries can be expensive, dialysis is also costly at nearly $90,000 per year. Immigration status is not part of the eligibility criteria to be on the national transplant list, but health insurance to cover the surgery is required. Many immigrants face difficulties securing health insurance and most undocumented immigrants are not eligible for any health insurance. Some immigrants, including lawful permanent residents after five years, as well as asylees and refugees, may qualify for state Medicaid programs. Those who cannot meet strict citizenship and immigration criteria are not eligible. Jorge is not eligible for regular Medicaid but has basic medical care provided through an emergency fund. Even so, very few state Medicaid funds will cover transplants, even if they cover regular dialysis. In 2014, Illinois became one of the first states to cover kidney transplants for undocumented patients. Illinois’s state Medicaid director made this decision on cost saving grounds.
[See: 13 Ways Social Determinants Affect Health.]
In May 2018, HealthDay interviewed a Colorado nephrologist, Dr. Lilia Cervantes, about her research on undocumented immigrants with kidney failure. She said that doctors and nurses were drained from witnessing “needless suffering and high mortality,” and some even stretched guidelines in their practices to provide needed care for undocumented patients. Insurance coverage and immigration status can frustrate the efforts of providers to give evidence-based medical care, and conflict with the duty to seek good care for our patients that motivated us to enter the medical field.
Jorge is a young man who came to the U.S. from El Salvador determined to work and escape violence back home. As part of his care team, I was desperate to find a long-term solution for Jorge’s kidney failure. I scoured the internet and spoke with our health center’s legal and insurance navigation teams to find potential options. I learned that Jorge can continue dialysis through coverage from the District of Columbia but has no access to a kidney transplant. As disappointed and frustrated as I am to not be able to help him obtain a transplant, it doesn’t compare to the despair that he feels when he talks about his health. He knows that he needs a transplant or he will not live.
I keep coming back to that first conversation and my response to Jorge: “I’m glad your friend was willing to give you a kidney. Unfortunately, with the way insurance rules are right now, you do not have coverage to get a kidney transplant, even though your friend wants to help.” The translated words hung in the air. Jorge’s dejected expression showed exactly what he felt. For patients with kidney failure, especially younger ones who are otherwise healthy, a transplant offers the possibility of a life free from the hours spent at dialysis and feeling dizzy and tired. It’s the chance to work and contribute to local communities. If kidney transplants may save money, or at worst, cost the same, we ought to consider the significant improvement they create in the quality of life for our patients. I hope that visits with Jorge will soon include news that he can be added to the transplant list, before it’s too late.
[See: Health Care Workers Deploy Creative Strategies to Calm Terrified Immigrant Patients.]
What can you do? Ask your state and local health officials how undocumented immigrants with kidney failure are cared for in your state, and urge them to consider options to reduce long-term cost while improving health outcomes and quality of care.
*Name changed to protect patient identity.
More from U.S. News
5 Ways to Reduce Your Risk of Developing Kidney Disease
5 Unintended Consequences of Eating Too Much Protein
When Health Treatments Go From Hospital to DIY
For Thousands of Immigrants in the U.S., Care for Kidney Failure Is Difficult originally appeared on usnews.com
