Early in her work as a hospitalist at Denver Health, Lilia Cervantes, MD, FACP, met a patient who changed the direction of her career. As an undocumented immigrant with end-stage kidney disease (ESKD), the patient was ineligible for public assistance and had to rely on weekly sessions of emergency dialysis when her symptoms became unbearable.
Like Dr. Cervantes, the patient was Latina, in her early 30s with young children, and from a low-income background. However, while Dr. Cervantes' U.S. citizenship had facilitated her career success, her patient lacked housing and access to outpatient dialysis three times per week—the standard of care for the majority of patients with ESKD.
“This patient had suffered three cardiac arrests and knew her days were numbered, and she didn't want to keep putting her children through the trauma of wondering if their mother would survive week to week,” said Dr. Cervantes. “She ultimately decided to stop emergency dialysis and give up her sons for adoption so they could grow up in a loving family and pursue an education.”
After the death of her patient and friend in 2014, Dr. Cervantes devoted herself to researching and advocating for improvement of care for undocumented patients with ESKD. She spearheaded a successful advocacy effort that led to Colorado becoming one of 12 states that classifies ESKD as an emergency medical condition under Medicaid, allowing undocumented patients to receive coverage for standard outpatient dialysis.
“My experience taught me that advocacy and policy work can be effective,” said Dr. Cervantes, who now mentors other physicians looking to change laws on access to care for undocumented patients with kidney disease in their states. “It's really our social responsibility as physicians to be advocates for these patients because we have a unique lens. We know lot about medical problems, and we can connect the dots with social determinants of health.”
Emergency dialysis the norm
Undocumented immigrants in the U.S. with ESKD number in the thousands, according to researchers. Due to lack of insurance, patients are often diagnosed only after the emergence of severe symptoms.
Undocumented immigrants are not eligible for Medicare, federally funded Medicaid, or assistance through the Affordable Care Act (ACA), and many cannot afford private insurance. Under federal law, states can receive matching funds for care of undocumented patients through emergency Medicaid programs, but it is left to each state to determine what coverage, if any, is provided for ESKD care.
In most states, undocumented immigrants' access to care is limited to safety-net providers, including hospital EDs, that are required to provide emergency treatment under the federal Emergency Medical Treatment and Active Labor Act. Patients then have to wait until their symptoms qualify for ED admission for care to be reimbursed by emergency Medicaid program funding.
However, some states, including Colorado, California, and New York, have passed legislation recognizing dialysis for ESKD as a life-sustaining treatment. In effect, such laws enable emergency Medicaid funding in those states to be used for scheduled outpatient dialysis treatments for undocumented patients.
Most states' system of only covering emergency dialysis is not only dangerous for patients—the five-year mortality rate on emergency dialysis is 14 times higher versus standard care—but also expensive, noted an editorial in the August 2020 American Journal of Kidney Disease (AJKD). Emergency-only dialysis costs up to $400,000 per person annually compared with under $100,000 in the outpatient setting, and switching could potentially save over $5,700 per person per month, the article said.
Taking action earlier in the disease course and connecting undocumented patients with preventive care to manage their hypertension and diabetes, both major causes of chronic kidney disease, could help avoid the need for dialysis altogether, said Jonathan J. Suarez, MD, a nephrologist and intensivist at Emory Health Care System in Atlanta.
However, even patients who have some access to primary care but no insurance coverage may run into problems if they eventually require more expensive advanced procedures—such as biopsies or vascular access placement—or have underlying conditions that are expensive to treat, including systemic lupus erythematosus.
“Patients who need dialysis usually have to get an arteriovenous fistula, which requires imaging, surgery, and follow-up,” said Dr. Suarez. “Getting a hospital to pay for that knowing they won't get reimbursed is hard, especially when hospitals make a lot of their money through surgeries and procedures.”
For example, he recalled trying to get one undocumented patient scheduled for fistula placement.
“No surgeon would agree to do it due to lack of coverage, so I had to find a way to get the patient admitted to the hospital and get the surgery done that way, so it would be considered an emergent condition,” he said. “It's frustrating, considering with that with other patients I just send a message to my coordinator and the surgery is scheduled within a week.”
Undocumented patients with ESKD are often younger with fewer comorbidities than other ESKD patients, said Dr. Suarez. With an average age in their mid-40s, they are often ideal candidates for transplantation but usually cannot qualify due to lack of insurance to cover the high cost of immunosuppressive medications after the procedure.
Some patients without coverage for transplant have even lined up potential donors and family members willing to help with post-transplant care, said nephrologist Rajeev Raghavan, MD, associate professor and director of the nephrology training program at Baylor College of Medicine in Houston, who is interviewing undocumented dialysis patients about their donor status for an upcoming study. According to his preliminary results, up to 60% of the patients had a potential living donor.
“A lot of patients coming into our outpatient clinic have advanced disease,” he said. “Trainees have to ask about their legal status first, and if the patient is not a citizen it's a different conversation, because there is usually no option for transplant.”
Physicians push for change
Caring for undocumented patients with ESKD also takes a toll on physicians, especially those working in major safety-net hospitals in states with large immigrant populations. A study led by Dr. Cervantes, published by Annals of Internal Medicine in 2018, found that clinicians providing emergency-only dialysis experienced signs of burnout stemming from feeling that they were being forced to provide substandard care.
“Four years ago we had a huge number of patients coming to the ED for dialysis every day,” said Dr. Raghavan, who did his residency training at Baylor College of Medicine-affiliated Harris Health, the largest safety-net hospital in Houston. “All were very sick with high blood pressure, nausea, swelling, etc., and we could only admit the sickest among them. One of our trainees came to me in tears because she had to tell several patients there were no spots after they had waited there all day.”
Such experiences have inspired physicians to get involved in local action on this issue. For example, a team at Parkland Hospital—the primary safety-net hospital for Dallas County in North Texas—worked with a local nonprofit to subsidize premiums for patients who purchase commercial coverage through federal marketplace exchanges, according to a Perspectives article published April 7, 2020, in Kidney 360.
While undocumented patients are ineligible for subsidized plans on the exchanges, they can purchase commercial plans at full price. A provision in the ACA forbids companies from denying this coverage based on preexisting conditions such as kidney disease.
As a result of the Texas program, hundreds of patients have been placed in outpatient dialysis clinics, while the percentage of the hospital's dialysis treatments that were unfunded dropped from 70% in 2014 to 30% in 2020, according to the article. The authors conducted a retrospective analysis after the first year of the program and found that patients who converted to scheduled dialysis gained a significant survival benefit and had lower ED and hospitalization rates and costs of care compared with those on emergency dialysis.
Dr. Raghavan and others working in Harris County, which contains most of Houston, followed a similar model, working with a local nonprofit to help patients with premiums for plans purchased under the ACA. The system has helped place about 50 patients into outpatient clinics so far this year, said Dr. Raghavan. Undocumented patients in the area are also eligible to receive scheduled dialysis care at a county-funded outpatient clinic.
“It's encouraging that we can make a difference, but it's a house of cards because it's not a long-term solution,” said Dr. Raghavan. Maintaining the program depends on a number of factors, including the ACA staying intact and ongoing participation of private funders in the program.
The county clinic, the only one of its kind, is completely full, he noted. “It serves about 140 patients, and the last shift often goes to 2 a.m. on Saturday night. We can't add any more patients unless someone dies.”
The possible solutions for undocumented patients in need of dialysis are distinctly different state by state, depending on Medicaid policies. “I've worked in several states—including Pennsylvania, Texas, and Georgia—and all have different rules,” said Dr. Suarez.
In Pennsylvania, for example, which is among the 12 states that offer emergency Medicaid coverage for standard dialysis and has a relatively small population of undocumented immigrants, patients automatically qualify for outpatient dialysis care after presenting to a hospital, he said.
“In Pennsylvania, as soon as a patient with ESKD was considered dialysis-dependent, I was able to get them the appropriate medications and care,” he said. “We immediately connect them with a social worker and set them up with appointments at an outpatient dialysis unit three times a week.”
The situation in Georgia is more similar to that in Texas, he said. Grady Hospital, the major safety-net hospital in the Atlanta area, sees about 100 undocumented ESKD patients in the ED once or twice a week, on average, after which they receive inpatient dialysis. Dr. Suarez is currently working with others to compile data for policymakers on how much money could be saved if all of these patients received the recommended thrice-weekly care at outpatient clinics.
In the meantime, helping patients access dialysis and subspecialty care is a struggle, he said.
“I try to do what I can for individual patients by setting them up to see me through charity care and getting financial people involved to work out what to do for future visits or get them into a county-funded clinic,” he said. “Basically, I try to finagle a way through my own network to get people appointments, and that's how it works here . . . it's not a straightforward process.”
Ultimately, a national policy providing coverage for these patients is urgently needed, said Dr. Cervantes. Even in states that have extended Medicaid to include dialysis, patients face other barriers, including access to follow-up care and transplantation. In addition, in states that have not expanded emergency Medicaid, legal permanent residents are not eligible for dialysis coverage until they have lived and worked in the country for five years, she added. Until then, they must rely on the ED.
Changes last year to the U.S. Citizenship and Immigration Services Public Charge rule present another barrier to care, said Katherine Rizzolo, MD, a nephrology fellow at the University of Colorado in Aurora and lead author of the editorial in AKJD. Under the current rule, any use of public assistance—including nonemergency Medicaid, housing benefits, and food stamps—counts against applicants for permanent residence and their dependents.
“There was an immediate chilling effect when the rule took effect, leading patients to stop seeking care because they were afraid they would implicate their family,” said Dr. Rizzolo. “We have seen patients pull their children out of the Children's Health Insurance Program due to concern about the public charge rule.”
More recently, the COVID-19 pandemic has added urgency to the efforts to get patients into regular dialysis care, according to Dr. Rizzolo. Compared with outpatient dialysis, emergency dialysis puts patients at higher risk for COVID-19 exposure, and Latino patients are already known to be at disproportionately higher risk for COVID-19 infection and death.
“We recommend that states that don't already have an official policy move quickly to make ESKD an emergency condition covered under Medicaid,” she said. “Many of these patients come from higher-risk backgrounds and cannot reliably socially distance due to working frontline jobs and living in multigenerational homes. Enabling them to get outpatient dialysis would also be protecting everyone else in the ED from risk of COVID-19 transmission.”
For physicians who want to help change dialysis policy for undocumented immigrants, coordinating with social workers and getting involved with community groups and advocacy efforts can be a way to both help patients and reduce their own burnout, said Dr. Cervantes.
“Advocacy can be a mechanism to reduce burnout related to moral distress around the social challenges these patients face,” she said. “The advice I have is to really engage with others, including patients and nonprofit community groups, because as clinicians we don't have all the training necessary to change policy but we can be effective if we lean on each other.”