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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.
And that's the way Ofri likes it. In a lecture she gave to the emergency room staff recently, she said, "I hate it when patients are like me"—white, educated, and neurotic.
And she's not all talk. In 2005, she and her husband, a computer programmer, uprooted their family to live in Costa Rica for a year. But when she realized she was pregnant with their third child, "that threw a wrench in the works," she says, "but we decided to soldier on."
Ofri says she had always found Costa Rica to be friendly—"The culture is so warm and inviting," she says—but when she went into labor, she realized there was no one to leave her other kids with. "We literally had no one. [We had] neighbors, but we really didn't know them." The experience, she says, made her think about her patients' journeys to America.
"All the time I was not feeling confident that I could explain myself. I had to rely a lot on nonverbal assistance. I thought about my patients and how they are so sick and they are just trying to make themselves known."
An emergency Medicaid plan allows Julia to pay only about $22 a month for the 15 different medications she must take to lessen the symptoms of her enlarged heart. She picks them up at Bellevue, but since she's too weak to climb the stairs at the subway station, the hospital provides transportation.
Her weekly routine at Bellevue includes blood tests, questions from doctors, and meetings with social service workers and a heart failure group. She describes the group as an awkward meeting where her doctors gather and speak only in English about her heart. "I never understand what they say," she says. The hospital also provides her weekly with a psychiatrist in addition to her regular medical appointments.