Without treatment to replace his failing kidneys, doctors knew, the man in Bellevue hospital would die. He was a waiter in his early 30s, a husband and father of two, so well liked at the Manhattan restaurant where he had worked for a decade that everyone from the customers to the dishwasher was donating money to help his family.
He was also an illegal immigrant. So when his younger brother volunteered to donate a kidney to restore him to normal life, they encountered a health care paradox: the government would pay for a lifetime of dialysis, costing $75,000 a year, but not for the $100,000 transplant that would make it unnecessary.
For nearly two years, the brothers and their supporters have been hunting for a way to make the transplant happen. Their journey has taken them through a maze of conflicting laws, private insurance conundrums and ethical quandaries, back to the national impasse between health care and immigration policies.
The waiter’s boss sought private insurance, she and the brothers said, speaking on the condition that their names be withheld for fear of provoking immigration authorities. The Catch-22: for the first year, the waiter, called Angel, would get no coverage for his “pre-existing condition,” nor would he receive the dialysis that keeps him alive and able to work four days a week.
Doctors sought a transplant center that would take him. Hospitals in the city receive millions of taxpayer dollars to help offset care for illegal immigrants and other uninsured patients. But at one hospital, administrators apparently overruled surgeons willing to waive their fees. At another, Angel was told to come back when he had legal status or $200,000.
A last resort is a return to Mexico, where the operation costs about $40,000. But to pay off the necessary loans, Angel and his brother, a deli worker, would have to sneak back in through the desert. If they failed, they would be cut off from their children in Brooklyn, who are United States citizens.
“As a physician, it puts you in a real ethical dilemma,” said Dr. Eric Manheimer, Bellevue’s medical director, noting that a transplant would sharply reduce Angel’s risk of death from complications. “The ultimate irony is it’s cheaper to put in a transplant than to dialyze someone for the rest of their life.”
"As a physician, it puts you in a real ethical dilemma ... The ultimate irony is it’s cheaper to put in a transplant than to dialyze someone for the rest of their life."
Bellevue performs no transplants but, as a trauma center, often supplies organs harvested, with family consent, from illegal immigrants fatally injured at work.
“Here’s the paradox: he could donate, but he can’t receive,” Dr. Manheimer said, calling the imbalance troubling. Organ registries do not record illegal status, but a study estimated that over a 20-year period noncitizens donated 2.5 percent of organs and received fewer than 1 percent.
To those focusing on immigration enforcement, however, the inequity runs the other way. “They should not get any benefit from breaking the law, especially something as expensive as organ transplants or dialysis,” said Representative Dana T. Rohrabacher, Republican of California, who contends that care for illegal immigrants is bankrupting American health care and has sought to require that emergency rooms report stabilized patients for deportation unless they prove citizenship or legal residence.
“If they’re dead, I don’t have an objection to their organs being used,” Mr. Rohrabacher added. “If they’re alive, they shouldn’t be here no matter what.”
To Ruth Faden, the director of the Johns Hopkins Berman Institute of Bioethics, the brothers’ case, like the transplant statistics, illustrates how quickly firm principles on both sides unravel in practice.
“We tie ourselves up in knots,” she said, “because we’ve accepted as a country and in international human rights law that if someone shows up in extremis in your emergency room, the nurses and doctors and technicians are morally obligated, and legally obligated, to provide that life-saving care.”
How to begin refusing care, she added, becomes a dilemma for “real people in real time.”
The sudden onset of the waiter’s illness in January 2010 left no time to spare. At Bellevue, he underwent surgery to implant a temporary venous catheter in his neck, to cleanse his blood of lethal toxins. The cause of his renal disease is most likely genetic: when he was 8—about the age of his own sons now—his father died of kidney failure.
Through quirks of legislative history, nearly everyone with end-stage renal disease in the United States, regardless of income, is covered under federal Medicare for dialysis and transplantation, except illegal immigrants. But regardless of a patient’s immigration status, hospitals can be reimbursed for emergency care by Medicaid, the federal and state insurance program for the needy.
Unlike most states, New York, California and North Carolina define outpatient dialysis as an emergency measure. Studies show such regular dialysis is cheaper, with fewer life-threatening complications, than waiting until toxin levels require hospital treatment.
“What do I have to do to become normal?” Angel remembers asking. The medical answer was clear: a transplant, and anti-rejection drugs costing about $10,000 a year. But news that his brother and sister were compatible donors came with a blunt warning, the waiter recalled: “As long as you don’t have your papers, you won’t get a transplant.”
Like many Mexican New Yorkers, Angel has relatives who migrated years ago without visas and are now citizens. An uncle still works for the restaurateur who helped him legalize. But immigration rules have changed, eliminating such paths.
“My boss, she tried to help me,” said the waiter, who supported his mother and half-siblings from the age of 16, and worked his way up from busboy, paying taxes, mastering English and learning enough French to counsel diners on the wine list. “We find no way.”
His boss kept hunting. “He deserves every break he can get,” she said.
They consulted lawyers at LegalHealth, which counsels low-income patients. Randye Retkin, the director, said the waiter was one of a dozen patients in need of transplants who were referred to the nonprofit program by hospitals last year because of immigration barriers.
For many there is no remedy, Ms. Retkin said. She cited a Mexican mother of two who died without the small-bowel transplant she needed, just as lawyers won a yearlong legal battle for Medicaid to pay for it.
The waiter turned to the Mexican consulate, which appealed to Dr. Manheimer. The doctor said he persuaded surgeons at NYU Langone Medical Center to waive their $20,000 fees, but administrators would not absorb the rest. The hospital declined to comment.
Two other doctors, Hector J. Castro, a critical care specialist, and Kann H. Patel, a hematologist, sent Angel to Mount Sinai Medical Center. But there a financial transplant counselor told him he would have to pay double the typical cost in advance, to cover any complications.
“Personally, I’m troubled by it,” said Dr. Sander Florman, who directs the Recanati/Miller Transplantation Institute at Mount Sinai. “We’re looking at human beings.”
But Dr. Florman confirmed that the waiter’s experience reflected policies at the hospital. “Our general approach is we’re not the immigration police,” he said. “On the other hand, there has to be a mechanism to pay for it.”
Mount Sinai officials say they provided $67.3 million in uncompensated care last year, and received $25 million from the state to offset such costs. “Mount Sinai struggles each day to balance its limited resources with its strong commitment to provide compassionate medical care,” it said in a statement, noting that kidney transplantation, unlike dialysis, is not an emergency procedure under Medicaid.
For nearly everyone else, however, there is a Medicare option. Scholars trace the unusual program, now costing $40 billion a year, to a 1962 Life magazine article titled “They Decide Who Lives, Who Dies,” about laymen at a Seattle hospital who judged which patients would get scarce treatment on the first “artificial kidney machine.” The outcry that followed is often credited for the birth of bioethics and for the 1972 law guaranteeing coverage.
That law did not mention citizenship, said Dr. Scott Sanoff, who teaches medicine at the University of Virginia, but later restrictions, and murky state-by-state variations in Medicaid, left decisions on illegal immigrants’ access to care to each medical center, often without any payment mechanism. The life-and-death nature of the decisions has been obscured, he added: In the case of Angel, “his life expectancy could be more than doubled with the transplant compared to dialysis.”
The waiter now shuttles between a basement dialysis center, the restaurant and his family’s cramped but well-kept walk-up. There, as their children clustered nearby, his brother, 26, said they would not give up.
“He’s more than my brother, he’s like my father,” he said. “If I can give him life, I have to.”