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”Back in the 1980s, we basically used kids [for speaking to patients],” says Ofri. “Because the kids were the ones who were bilingual. Which is completely inappropriate.”
Surprisingly, it wouldn’t be impossible for Julia to end up with a new heart, even as an illegal immigrant. But it wouldn’t be easy, either.
”Being undocumented, by itself, does not make a person ineligible for transplant,” says Stuart Katz at NYU’s Division of Cardiology. In a telephone interview, he explains that, in a case like Julia’s, insurance coverage is crucial. He says that even if a heart transplant were performed, there are costs associated with post-transplant care that can overwhelm patients without insurance. “More than anything, we have to access how sick a person is,” and base a transplant on blood type, body size, and urgency. Katz has advised a number of undocumented patients who can’t afford the costs of a heart transplant. “I tell them, when they aren’t too sick, ‘You have to get documentation.’ Sometimes, I tell them to hire a lawyer. I mean, unfortunately, a medical plea to the State Department falls on deaf ears.”
Documentation, Ofri says, can help in gaining insurance. “You have to have the wherewithal in all respects—and part of that is financial. If she can get insurance, that will help her tremendously.”
As this week began, there were 324 patients waiting for heart transplants in New York. The United Network for Organ Sharing (UNOS), which controls the policies associated with transplants, says it doesn’t disqualify transplant patients based on immigration status. But, UNOS spokesman Joel Newman writes in an e-mail, “The presumption is that most non-resident foreign nationals have legal documentation—a visa or a work permit—and I believe that’s true for the vast majority of non-residents listed for a transplant. That said, we have no mechanism to track or enforce legal residency status.”
Undocumented immigrants have received transplants—the best known was 17-year-old Jesica Santillan from Mexico, who died in 2003 when her heart-lung transplant at Duke University Medical Center failed because doctors gave her organs from someone with a different blood type. It’s assumed that transplants to illegal immigrants are rare, but UNOS does take note of hospitals that perform transplants to non-residents. “If a transplant program happens to transplant more than 5 percent of its recipients in a year who are non-residents, they will get a review letter from UNOS asking them to provide more information about the circumstances. If a transplant program appears to have a pattern of listing and transplanting an undue number of non-residents, we could issue a membership sanction, but the two most serious and public sanctions we can give have never been applied for this issue.” Newman also states there is no hierarchy on the transplant list when it comes to legal status.
Julia is trying to get her name on the list. She and her husband—a legal resident in the U.S.—are working with a social services lawyer at Bellevue to get the necessary paperwork processed. But it has already been nine months since they began the effort.
”Look, what isn’t rare is that, as an immigrant, all your organs can be harvested. But you can’t receive any? We don’t have the statistics, but a lot of our patients end up being donors,” he says. “I think there’s controversy: Why should undocumented patients give an organ, when they can’t they get an organ?”
Her doctors are not certain that she’ll live out another year without a transplant.
Danielle Ofri’s weekly schedule frightens some of the physicians in her department.
She rarely has a moment to spare, between delivering lectures on the changing demographics of patients and seeing the patients in her clinic, raising three young children, touring recently for a book (Medicine in Translation: Journeys With My Patients), and serving as the editor and co-founder of the Bellevue Literary Review. It’s probably fortunate that only a couple blocks from the hospital is her home, where she relaxes each night with cello practice.
Born a New Yorker, Ofri graduated from NYU, completing a seven-year PhD and MD program while still finding time to travel. In her book, she writes about the challenge of serving patients from around the world who speak many different languages. Bellevue is known for its ability to handle New York’s immigrant population and has an interpretation services department that takes up half of the hospital’s fifth floor. The in-house staff can handle eight different languages, and telephone interpreters allow them to handle 73, at last count.