In a dialysis center in Brooklyn, Nardel Joseph tried to make friends with other patients, until they began to die one by one.
When her kidneys failed due to an autoimmune disease, Ms. Joseph, 34, realized she could be next.
A new kidney would have offered Ms. Joseph the best hope of regaining her health, but as an undocumented immigrant with no health insurance, her odds of getting a transplant were close to zero.
It’s unfair, Mrs. Joseph said.
Undocumented immigrants face major barriers to receiving organ transplants themselves, even though they can donate organs, and many of them are signing up to do so through programs such as IDNYC, which provides New York residents with a municipal ID card independently by their immigration status.
Now, some advocates are pushing the state to make organ transplants available to undocumented immigrants, even though the effort could create political friction as the state debates how to handle an influx of migrants.
A bill before the state legislature would add kidney transplants, the most frequently performed organ transplants, to the limited menu of emergency medical services provided to undocumented and uninsured immigrants.
Albany lawmakers are also considering expanding a government-subsidized health insurance plan to all undocumented adult immigrants, 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 years past.
Undocumented immigrants are not explicitly barred from receiving transplants. But they face major hurdles because they don’t have Social Security numbers and often don’t have health insurance. City agencies estimate that 46 percent of the 476,000 undocumented immigrants in New York City have no health insurance.
Undocumented immigrants cannot access many of the benefits Medicaid provides to low-income Americans, including coverage for transplant surgery and expensive medicines that keep their bodies from rejecting a new organ.
This prevents 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 sounded like, “Well, you’ll gladly take your organs, but we won’t give them to you.”
It is 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 should not have access to life-saving organs during their lifetime if they need them, he said.
If the bills make headway, the issue could become politically charged, said Chris Pope, a health policy analyst at the Manhattan Institute, a conservative think tank.
About half of dialysis patients die within five years, and thousands of people on transplant lists die each year while waiting for organs. Would a politician worry about being accused of making organs available in a way that slows down citizens’ waiting lists? asked Mr. Pope.
The vast majority of people who become potential organ donors sign up when they get their driver’s license; undocumented immigrants obtained driver’s licenses in New York in 2019. Additionally, of the more than 1.5 million New Yorkers who have signed up for the city’s municipal ID cards, approximately 214,147 have registered as potential organ donors. Many are undocumented, officials said.
Having mechanisms that allow them to donate organs without mechanisms to help them have the gift of life when they need it is extremely unfair and unfair, said Karina Albistegui Adler, who works for New York Lawyers for the Public Interest and helps immigrants to get medical care.
Your insurance status isn’t the only obstacle. Hospitals, for example, tend to ask for a Social Security number when considering eligibility for a transplant, Ms Adler said, although there is no legal requirement to do so.
Data on the immigration status of transplant recipients are scarce. But illegal immigrants, who make up more than 3% of the US population, were estimated to have received about 0.4% of liver transplants in a national study.
Limiting Medicaid coverage for undocumented immigrants makes little economic sense when it comes to kidney transplants, experts say, noting that the dialysis New York offers to undocumented immigrants is often more expensive than a transplant in the long run.
A group of doctors and lawyers across the city are trying out some small-scale workarounds. SUNY Downstate Health Sciences University in Brooklyn assigned a social worker to find kidney transplant candidates at local dialysis centers and help them navigate immigration paperwork and obtain health insurance. The effort has resulted in five transplants so far.
Ms. Joseph arrived in New York in 2011 from the Caribbean island of St. Lucia. She is among about 100 others starting the process.
I had lost all hope, she said. Now, after a lawyer helped her get health insurance last year, she gives herself a small dose of optimism and envisions life with a new kidney. She would go back to work as a nanny and she would have the energy to keep up with the young children.
Liset Cruz contributed report.
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