Immigrants fear losing access to organ transplants

CHICAGO — After he was diagnosed with renal failure a year-and-a-half ago, Luis Garfias soon came to dread the idea of spending the rest of his life on dialysis. Just 22 years old, the Chicago resident says that getting treatment three times a week leaves him feeling weak and nauseated and “holds me back from having a normal life.”

Garfias is undergoing an evaluation at a local hospital to determine whether he is instead eligible to receive a kidney transplant, a procedure that roughly triples the life expectancy of renal-failure patients and greatly improves their quality of life. Young and otherwise healthy, Garfias has many of the qualities that specialists look for when determining whether a patient is suitable for a transplant.

He faces a major obstacle, however: As an immigrant without legal papers, the window in which Garfias can receive transplants may soon close. A law passed last year made Illinois the only state to fund kidney transplants for noncitizens ineligible for Medicaid, including undocumented immigrants. But that’s expected to change under the state’s new governor, a likelihood that’s left Garfias and hundreds of other immigrant patients like him holding their breath.

Republican Gov. Bruce Rauner’s proposed budget for fiscal year 2016 eliminates funding for both transplants and dialysis for noncitizens as part of $1.4 billion in cuts to the state’s Medicaid program. Without this guaranteed funding or access to government health insurance, most undocumented patients will be unable to show that they can pay for the procedure and costly post-operative care, a requirement to gain access to the national transplant waitlist. All patients who are unable to pay for transplants face the same predicament, but undocumented immigrants are particularly affected because they are barred from both public-insurance programs and private plans sold on state-run health-care exchanges.

The proposed cuts have alarmed activists and members of the medical community who saw Illinois’ law as a potential model for other states. The transplant issue, they say, is emblematic of a larger problem: While the Affordable Care Act is thinning the ranks of the uninsured, its explicit exclusion of 11 million undocumented immigrants gives hospitals serving them few options and leaves critical care far out of reach.

“Illinois’ law was a major advance, and defunding it would be nothing short of a health and human-rights disaster,” says Dr. David Ansell, senior vice president for system integration at Chicago’s Rush University Medical Center and a key advocate of the measure. “This is the approach that makes the most clinical, moral and financial sense.”

The national organ-sharing system, established by federal legislation in the 1980s, is supposed to ensure that available organs are allocated fairly. Many physicians and advocates say that undocumented immigrants’ de facto exclusion contradicts this principle, especially given that noncitizens are believed to donate more organs than they receive in what one study termed a “one-way street.”

Nevertheless, the persistent scarcity of available organs — nationwide, an average of 21 people die each day waiting for transplants — makes the issue a lightning rod for conservatives who contend that any expansion of health care for undocumented immigrants would drain limited resources.

“Clearly, there is not enough money to provide for the needs of everyone in the state who suffers from chronic kidney disease,” says Ira Mehlman, a spokesperson for the Federation for American Immigration Reform. “When needs outstrip resources, it means that services provided to illegal aliens will result in citizens and legal immigrants not receiving the care they desperately need.”

A growing number of physicians and activists, meanwhile, cite organ transplants as a case in point of why continuing to shut undocumented immigrants out of the health-care system is as inefficient as it is inhumane. In addition to foreclosing on the options that patients like Luis Garfias have for a healthy life, advocates argue, denying transplants costs taxpayers more in the long run than it would to fund the procedure.

That’s because under the patchwork of care available to undocumented immigrants, many end up accessing services through emergency rooms, where hospitals are required by federal law to stabilize patients with life-threatening conditions, including acute kidney failure, regardless of their legal status or the ability to pay. Thus, undocumented patients can receive emergency dialysis, and a handful of states allow ongoing outpatient dialysis, but the services covered by the program known as “emergency Medicaid” end there.

Vanessa Grubbs, a nephrologist at the University of California, San Francisco, Medical Center, estimates that up to a quarter of her patients are undocumented. She argues that it’s shortsighted to refuse transplants to individuals, only to have them return repeatedly for emergency dialysis — which can cost upward of $200,000 — or, in states that allow it, remain on outpatient dialysis indefinitely. Though transplants bear higher initial costs, “within three years you hit the breaking point, where it’s less expensive than dialysis,” she notes. “And of course it’s much better for the patient, who’s no longer tethered to a machine. If the most effective way of caring for people is also the most cost efficient way, why can’t we figure out how to do that?”

It was this logic, along with the fact that many immigrant patients already had a willing kidney donor, which propelled Illinois lawmakers to pass the transplant-funding measure last year as part of a larger Medicaid bill. Under the new law, the state would pay for kidney transplants and anti-rejection medications and cover donors' costs, at an estimated expense of $7 million. Since its passage, one noncitizen has received a transplant, at a cost of $80,000, according to John Hoffman, a spokesperson for Illinois’ Department of Healthcare and Family Services.

The proposed defunding of the law in this year’s budget, currently under consideration by Illinois lawmakers, is fiercely opposed by a group of undocumented patients and activists in Chicago who have spent the last five years fighting for the right to receive life-saving transplants. “We are dealing with life and death,” says Father Jose Landaverde, who helped to organize patient hunger strikes and sit-ins when he was pastor of Our Lady of Guadalupe Anglican Catholic Mission. “These cuts would condemn our community.”

The debate over whether and how to extend transplant eligibility is, in one sense, a case of history repeating. When the world’s first outpatient dialysis unit was established in 1962, demand quickly outpaced capacity and funding for the treatment. A special committee was tasked with determining who would have access to the dialysis unit. These evaluations were made, initially, according to estimations of “social worth” — how much the committee believed patients would go on to contribute to society if they were to receive lifesaving treatment. Public outcry over what came to be called the “life or death committee” precipitated a series of congressional hearings on the issue and, eventually, a new federal insurance program covering the treatment of all U.S. citizens with end-stage renal disease.

Today, a similar lack of transparent policies governing transplant evaluations can harbor outright bias against immigrants, notes Ryan Abbott, an associate professor at Southwestern Law School, in Los Angeles. While the national transplant waitlist “has a very strong nondiscrimination policy,” he explains, getting on the waitlist is a different story. Local transplant centers are responsible for evaluating candidates but aren’t required to give their reasons for denying patients, with the result that individual centers or staff may opt to turn away immigrants for nonmedical reasons. A first step, says Abbott, would be to extend the national nondiscrimination policy to the local level.

Beyond this, advocates lack a clear way forward. California and a handful of other states and counties have recently created programs that expand access to dialysis and other types of care for undocumented immigrants, but “this can’t overcome the transplant problem,” says Michael Gusmano, a research scholar at the Hastings Center, a bioethics research institute, and co-director of its Undocumented Patients project. And where Illinois’ law provides crucial relief for undocumented patients, it may not be an effective cure for what ails U.S. health-care financing, he says. “It isn’t necessarily fair for individual state or local governments to bear the brunt of financing care for undocumented immigrants.”

Rush University’s Ansell, meanwhile, insists that waiting for a national solution is untenable, given the urgency of the issue. He is urging Illinois lawmakers not to reverse the progress that’s been made. “A federal program would be great, but it’s not going to happen anytime soon,” he says. “A solution has to start somewhere.”