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Spared as children -- then cut loose

The state paid for two illegal immigrants' new livers. They need organs again, but it's a different story at 21.

April 13, 2008|Anna Gorman | Times Staff Writer

Ana Puente was an infant with a liver disorder when her aunt brought her illegally to the U.S. to seek medical care. She underwent two liver transplants at UCLA Medical Center as a child in 1989 and a third in 1998, each paid for by the state.

But when Puente turned 21 last June, she aged out of her state-funded health insurance and was unable to continue treatment at UCLA.

This year, her liver began failing again and she was hospitalized at County-USC Medical Center. In her Medi-Cal application, a USC doctor wrote, "Her current clinical course is irreversible, progressive and will lead to death without another liver transplant." The application was denied.

The county gave her medication but does not have the resources to perform transplants.

Late last month Puente learned of another, little-known option for patients with certain healthcare needs. If she notified U.S. Citizenship and Immigration Services that she was in the country illegally, state health officials might grant her full Medi-Cal coverage. Puente did so, her benefits were restored and she is now awaiting a fourth transplant at UCLA.

Puente's case highlights two controversial issues: Should illegal immigrants receive liver transplants in the U.S. and should taxpayers pick up the cost?

The average cost of a liver transplant and first-year follow-up is nearly $490,000, and anti-rejection medications can run more than $30,000 annually, according to the United Network for Organ Sharing, which oversees transplantation nationwide.

Donor livers are also in scarce supply. In California, nearly 3,700 people are on a waiting list for livers, according to the network. Last year, 767 liver transplants were performed in the state. More than 90% of the organs were given to U.S. citizens.

Donor livers are generally allocated through a geographically based distribution system on the basis of how sick the patients are and how long they have been on the transplant waiting list.

Immigration status does not play a role in allocating organs.

But some say that it should and that illegal immigrants should return to their home countries for care rather than receive organs and costly transplants ahead of legal residents and U.S. citizens.

"All transplants are about rationing," said Roy Beck, executive director of NumbersUSA, which favors stricter controls on immigration. "I just don't think the public ought to be funding any kind of benefits for people who are breaking the law."

Larry Gonzalez, a U.S. citizen who has hepatitis C, has known for a decade that he needs a new liver but was just placed on the transplant waiting list last week.

"Why do we have to get in line behind immigrants, foreigners, when we have enough people here to fill the hospitals?" asked Gonzalez, 54, who lives in Ventura. "It just seems obvious to me that we shouldn't be taking a back seat."

But Dr. Michael Shapiro, vice chairman of the ethics committee for the organ network, said illegal immigrants have just as much right to organ transplants as U.S. citizens. He said it is likely that more illegal immigrants donate organs than receive them.

"People are people, and when you make an incision in an organ donor, you don't find little American flags planted on their organs," Shapiro said.

Holes in the safety net

Illegal immigrant children with certain severe, chronic illnesses are eligible for funding under a state program called California Children's Services. But the coverage ends when they turn 21. After that, they can receive free or low-cost treatment through county services for the medically indigent and, in some cases, emergency Medi-Cal. But in Los Angeles County, doctors said neither program covers liver transplants.

State health officials said California law is designed so there is no gap in coverage, so children move seamlessly from state-funded treatment to county care. But that doesn't always happen. When they become adults, patients like Puente often have to switch doctors and hospitals and may lose access to necessary care.

"Certainly it's not the ideal," said Stan Rosenstein, chief deputy director of healthcare programs at the California Department of Health Care Services. "We are strong believers in continuity of care, so it is concerning when you have a break in coverage."

That break can be life-threatening for people like Puente. "It doesn't matter if I'm undocumented," she said. "They should take care of me at UCLA for the rest of my life because I've been there since I was a baby."

Puente, who lives in Van Nuys, was transferred from County-USC back to UCLA this month after getting approved for Medi-Cal.

If illegal immigrants inform the state in writing that U.S. immigration services "is aware of their presence and does not plan to deport them," they could be eligible for full-scope Medi-Cal, said Norman Williams, spokesman for the state health department. Medical condition is one factor that would make immigrants eligible for coverage.

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