Why Undocumented Immigrants Struggle to Receive Organ Transplants

At a Brooklyn dialysis center, Nardel Joseph tried to befriend the other patients until they began to die one by one.

When her kidneys failed from an autoimmune disease, Ms Joseph, 34, realized she might be next.

A new kidney would give Mrs. Joseph the best hope of regaining her health, but as an undocumented immigrant with no health insurance, her chances of getting a kidney transplant had been close to zero.

“It’s unfair,” Mrs. Joseph said.

Undocumented immigrants face major hurdles to get organ transplants themselves even though they can donate organs, and more of them are signing up through programs like IDNYC, which gives New York City residents a municipal ID regardless of their immigration status.

Now some advocates are urging the state to make organ transplants available to undocumented immigrants, though the effort could create political friction as the state debates how to handle an influx of migrants.

A bill pending in the state legislature would add kidney transplants – the most commonly transplanted organ – to the limited menu of emergency medical care for uninsured immigrants. Lawmakers in Albany are also considering expanding a state-subsidized health insurance plan to all undocumented adult immigrants, following the lead of some other states, including California. The bill ‘Cover for everyone’ is getting slightly more support this year than in previous years.

Undocumented immigrants are not explicitly excluded from receiving transplants. But they face major barriers because they don’t have social security numbers and often don’t have health insurance. Municipal agencies estimate that 46 percent of the 476,000 undocumented immigrants in New York City do not have health insurance.

Undocumented immigrants don’t have access to many Medicaid benefits for low-income Americans — including coverage for transplant surgery and the expensive medications that keep their bodies from rejecting a new organ.

This blocks some immigrants from transplants, even if a family member offers a kidney.

Brendan Parent, a bioethicist at NYU Langone Health who specializes in organ donation and transplant policy, said the message from New York State sounds like, “We’re happy to take your organs, but we’re not giving you organs.”

“It is completely morally inconsistent that those who live and work here – and are not only able, but encouraged to serve as organ donors – should not have access to life-saving organs when they need them during their lifetime,” he said. .

If the bills move forward, the issue could become politically charged, said Chris Pope, a health care policy analyst at the Manhattan Institute, a conservative think tank.

About half of dialysis patients die within five years, and every year thousands of people on transplant lists die waiting for an organ. “Would a politician worry about being blamed for making organs available in a way that slows down the waiting list for citizens?” asked Mr. Pope.

The vast majority of people who become potential organ donors enroll when they get a driver’s license; undocumented immigrants were eligible for driver’s licenses in New York in 2019. In addition, of the more than 1.5 million New Yorkers who signed up for the city’s municipal ID cards, about 214,147 registered as potential organ donors. Many are undocumented, officials have said.

“Having mechanisms that allow them to donate organs without mechanisms to help them give life when they are in need is extremely unfair and unjust,” said Karina Albistegui Adler, who works for New York Lawyers for the Public Interest and helps immigrants to medical care.

Insurance status is not the only obstacle. For example, hospitals tend to ask for a Social Security number when considering whether to qualify for a transplant, Ms Adler said, though there’s no legal requirement to do so.

Data on the immigration status of transplant recipients is sparse. But undocumented immigrants, who more than 3 percent of the US populationwere estimated to receive about 0.4 percent of liver transplants in one national study.

Limiting Medicaid coverage for undocumented immigrants makes little economic sense when it comes to kidney transplants, experts say, noting that dialysis — which New York does offer to undocumented immigrants — is often more expensive than a transplant in the long run.

A group of doctors and lawyers in town try some workarounds on a small scale. SUNY Downstate Health Sciences University in Brooklyn has assigned a social worker to find kidney transplant candidates at local dialysis centers and help them navigate immigration bureaucracy and obtain health insurance. So far, the effort has led to five transplants.

Ms. Joseph, who had not registered as an organ donor, came to New York in 2011 from the Caribbean island of St. Lucia. She is one of about 100 others to begin the process.

“I had lost all hope,” she said. Now, after a lawyer helped her get health insurance last year, she allows herself a small dose of optimism and envisions life with a new kidney. She would return to work as a nanny and have the energy to keep up with small children.

Lisa Cruz reporting contributed.