Why Undocumented Immigrants Struggle to Receive Organ Transplants
By Joseph Goldstein
NEW YORK — At a dialysis center in Brooklyn, New York, Nardel Joseph used to try making friends with the other patients, until they began dying one by one.
As her kidneys failed from an autoimmune disease, Joseph, 34, realized she might be next.
A new kidney would offer Joseph the best hope for regaining her health, but as an immigrant living in the country without legal permission who lacked health insurance, her odds of getting a transplant had been close to zero.
“It’s unfair,” Joseph said.
Immigrants living in the country without legal permission face high hurdles to receiving organ transplants themselves, even though they can donate organs, and more of them are signing up to do so through programs like IDNYC, which gives residents of New York a municipal identification card regardless of their immigration status.
Now some advocates are pushing the state to make organ transplants available to immigrants living in the country without legal permission, although the effort could create political friction as the state debates how to handle an influx of migrants.
One bill under consideration in the state Legislature would add kidney transplants — the most frequently performed organ transplants — to the limited menu of emergency medical services provided to immigrants without insurance who are living in the country without legal permission.
Lawmakers in Albany are also considering whether to expand a government-subsidized health insurance plan to all adult immigrants living in the country without legal permission, which would follow the lead of a few other states, including California. The “Coverage for All” bill has somewhat stronger support this year than in past years.
Immigrants living in the country without legal permission are not explicitly blocked from receiving transplants. But they face major impediments because they lack Social Security numbers and often don’t have health insurance. City agencies estimate that 46% of 476,000 immigrants living in New York City without legal permission lack health insurance.
Immigrants living in the country without legal permission cannot access many of the benefits Medicaid provides to low-income Americans, including coverage for transplant surgery and the expensive medication that keeps their bodies from rejecting a new organ.
This blocks some immigrants from receiving transplants even when a relative offers a kidney.
Brendan Parent, a bioethicist at NYU Langone Health who specializes in organ donation and transplant policies, said the message from New York state has sounded like, “We’ll gladly take your organs, but we won’t give organs” to you.
“It’s completely morally inconsistent that those who live here and work here — and are not only able to, but are encouraged to serve as organ donors — would not have access to lifesaving organs during their life if they need them,” he said.
If the bills make headway, 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 each year, thousands of people on transplant lists die waiting for organs. “Would a politician be worried about being blamed for making organs available in a way that slows the waiting list down for citizens?” Pope asked.
The vast majority of people who become potential organ donors enroll when they get a driver’s license; immigrants living in the country without legal permission became 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 identification cards, some 214,147 registered as potential organ donors. Many are undocumented, officials have said.
“Having mechanisms that allows them to donate organs without mechanisms to help them have the gift of 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 obtain medical care.
Insurance status isn’t the only obstacle. Hospitals, for instance, tend to ask for a Social Security number when considering transplant eligibility, said Albistegui Adler, though there is no legal requirement to do so.
Data on the immigration status of transplant recipients is scarce. But immigrants living in the country without legal permission, who make up more than 3% of the U.S. population, were estimated to have received about 0.4% of liver transplants in one national study.
Restricting Medicaid coverage for immigrants living in the country without legal permission makes little economic sense when it comes to kidney transplants, experts say, noting that dialysis — which New York does offer undocumented immigrants — is often more expensive than a transplant over the long run.
A group of doctors and lawyers across the city are trying some workarounds on a small scale. SUNY Downstate Health Sciences University in Brooklyn has assigned a social worker to find candidates for kidney transplants at local dialysis centers and help them navigate the immigration bureaucracy and obtain health insurance. So far, the effort has led to five transplants.
Joseph came to New York in 2011 from the Caribbean island of St. Lucia. She is among about 100 others who are beginning the process.
“I had lost all hope,” she said. Now, after a lawyer helped her obtain health insurance last year, she allows herself a small dose of optimism and imagines life with a new kidney. She would return to work as a nanny and have the energy to keep up with little children.