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Foreigners, desperate and able to pay for transplants, find hope in U.S.

| Saturday, Sept. 13, 2014, 9:57 p.m.
Justin Merriman | Trib Total Media
Mika Nagao of Imizu, Japan, holds her 18-month-old daughter, Sumika, in Children's Hospital in Lawrenceville on Tuesday, Aug. 12, 2014. Sumika was one of the youngest patients to be transported from Japan on a ventricular assist device (VAD), which takes over the pumping action of the heart and offers lifesaving support, most often acting as a bridge to keep patients alive until donor hearts become available for transplantation. After the 16-hour flight from Japan to the United States, Sumika and her parents arrived at the Allegheny County Airport and were transported to Children’s Hospital by ambulance. The family received the news they had been waiting for in late May that Sumika would be getting a new heart. On May 30, Sumika received her heart and is doing exceptionally well.
Justin Merriman | Trib Total Media
Mika Nagao of Imizu, Japan holds her 18-month-old daughter, Sumika, at Children's Hospital in Lawrenceville on Tuesday, Aug. 12, 2014. Sumika was one of the youngest patients to be transported from Japan on a ventricular assist device (VAD), which takes over the pumping action of the heart and offers lifesaving support, most often acting as a bridge to keep patients alive until donor hearts become available for transplantation. After the 16 hour flight from Japan to the United States, Sumika and her parents arrived at the Allegheny County Airport and were transported to Children’s Hospital by ambulance. The family received the news they had been waiting for in late May that Sumika would be getting a new heart. On May 30, Sumika received her heart and is doing exceptionally well.
Justin Merriman | Trib Total Media
18-month-old, Sumika Nagao, of Imizu, Japan, sits at Children's Hospital in Lawrenceville on Tuesday, Aug. 12, 2014. Sumika was one of the youngest patients to be transported from Japan on a ventricular assist device (VAD), which takes over the pumping action of the heart and offers lifesaving support, most often acting as a bridge to keep patients alive until donor hearts become available for transplantation. After the 16 hour flight from Japan to the United States, Sumika and her parents arrived at the Allegheny County Airport and were transported to Children’s Hospital by ambulance. The family received the news they had been waiting for in late May that Sumika would be getting a new heart. On May 30, Sumika received her heart and is doing exceptionally well.
Justin Merriman | Trib Total Media
18-month-old, Sumika Nagao of Imizu, Japan, plays with transport team nurse, Sarah Dady, in Children's Hospital in Lawrenceville on Tuesday, Aug. 12, 2014. Dady accompanied Nagao on her 16-hour transport flight from Japan to the United States to receive heart transplant surgery. Sumika was one of the youngest patients to be transported from Japan on a ventricular assist device (VAD), which takes over the pumping action of the heart and offers lifesaving support, most often acting as a bridge to keep patients alive until donor hearts become available for transplantation. The family received the news they had been waiting for in late May that Sumika would be getting a new heart. On May 30, Sumika received her heart and is doing exceptionally well.

More than 200 international patients receive organ transplants in the United States every year, paying top dollar for access to the nation's limited supply of organs.

Foreign patients compete for organs from deceased donors that would go to the 123,000 citizens awaiting transplants, roughly 6,300 of whom die each year waiting for suitable matches.

Transplant centers, such as UPMC in Pittsburgh, bill payors as much as $1.2 million apiece for surgeries and follow-up care. Kidney transplants cost the least, averaging $263,000, Seattle-based consulting firm Milliman found. International patients typically pay more to transplant centers than U.S. payors and insurers, experts said.

“Some medical centers see foreigners as a source of income. They don't bring people from abroad out of generosity and love. They make a bundle,” said Dr. Gabriel Danovitch, medical director for the kidney and pancreas transplant program at University of California, Los Angeles, and former chairman of the international relations committee of the United Network for Organ Sharing.

The 224 transplants that surgeons performed on noncitizen and nonresident patients in 2013 represented a 20 percent jump from 2012, when transplant experts sanctioned by the government lifted a rule intending to curb such operations.

UNOS, the nonprofit that runs the nation's organ transplant system, does not track payments from international patients. Prospective recipients negotiate fees with transplant centers that often throw in services extending beyond medicine, such as financial counselors and translators.

Some hospitals provide concierges to coordinate appointments, medical records and visa requirements.

The practice elicits passionate criticism from some people.

“If you're not a U.S. citizen, you shouldn't be over here getting our organs. We should get first choice,” said Amanda Eisenhauer, 29, of Selinsgrove, north of Harrisburg, who has cystic fibrosis. In July, she went on a wait list for a double lung transplant at UPMC Presbyterian.

Advocates say allowing foreigners to receive organs in the United States can be a matter of life or death.

Very sick children

Sumika Nagao, a toddler from the Japanese city of Imizu, received a heart in May at Children's Hospital of Pittsburgh. Weakened by cardiomyopathy, a chronic disease of the heart muscle, the 18-month-old girl would have died, her family said.

“In Japan, we just don't have donors for that young age. They told us that if we wanted a transplant and wanted her to live, we'd have to leave the country. If that gives her hope to live, that's what we had to do,” her mother, Mika Nagao, 38, told the Tribune-Review through an interpreter.

Officials at Children's, affiliated with transplant giant UPMC, crafted a package deal for Sumika costing nearly $1 million, according to the family. It included flying her from Japan on a specialized jet staffed with two doctors, a nurse and a respiratory therapist.

“The question that should be asked is: Did she get special treatment because she could pay the money?” said George Annas, a professor and chairman of the Department of Health Law, Bioethics and Human Rights at Boston University.

“I don't think anybody should second-guess the family for bringing their child here. The question for Pittsburgh is: How often are you going to do this?”

Dr. Peter Wearden, surgical director for pediatric heart and lung transplantation at Children's Hospital of Pittsburgh, said the hospital is selective of international cases it accepts — typically very sick children.

Of 32 patients added to the heart transplant wait list in 2012 and 2013, only one was a nonresident; seven nonresidents went on the liver transplant list.

“Obviously, we'd love to be able to help everybody we could. We have to be cognizant of the fact that these donated organs are really a gift, and we have to be good stewards of that gift,” Wearden said.

Prepaid care

The severity of Sumika's illness shocked her parents, a psychiatrist and a nurse who have two older children. Doctors told them that only a transplant would save Sumika, whose plight became national news in her country.

Organ transplants are rare in Japan. In 2013, Japanese surgeons performed fewer than 300 organ transplants using deceased donors, compared with more than 22,000 in the United States.

The variation stems from cultural differences over when it's best to harvest organs and whether the practice is acceptable at all, according to medical scholars.

Many Japanese believe people need to keep their organs intact, even in death, so the body can be recycled for another life, said Dr. Ayano Kiyota, a geriatric medicine specialist at the University of Hawaii at Manoa in Honolulu.

“Certainly, if we could take care of our people in Japan, that's the best way to go,” said Kiyota, a UPMC-trained physician who is returning to practice this year in her native Japan. She said the Japanese government in 2010 began allowing organ donation from patients younger than 15, although the practice remains uncommon.

As Sumika got sicker, doctors hooked her to a machine, the Berlin Heart, to assume the heart's function and restore blood flow.

Researchers tested the device in Pittsburgh before the Food and Drug Administration approved it in 2011. Wearden trained colleagues at Osaka Medical Center in Japan on using the device. Sumika's parents, Mika and Masahisa Nagao, raised $1.4 million in donations to pay for their daughter's care, including the transplant.

Before they arrived in the United States, the family gave the hospital an $800,000 deposit, Mika Nagao said. The fee covered the cost of transporting Sumika in a leased jet, the transplant and a hospital stay for a number of days based on similar cases.

“They are required to deposit the money into an account prior to them flying in,” said Mourad Hanna, a manager in the international medical services department at Children's. Expenses not prepaid are offered at a 35 percent discount, Hanna said.

Children's officials would not discuss details of the arrangement, saying only that the discounts make their transplant program competitive with others in the United States.

Patients get quality care and competitive pricing that is “cost-effective for international families,” said Mariel Garcia, director of international and telemedicine services.

‘We did it just for her'

Sumika and her mother arrived in Pittsburgh in March.

“We were scared. We didn't know what was going to happen. We did it just for her,” Mika Nagao said.

They waited roughly two months for an available heart. The median wait time for a heart for children ages 1 to 5 is 104 days, according to UNOS.

Dr. Francis Delmonico, a professor of surgery at Harvard University and leading transplant expert, said Sumika “should not be denied a chance to live, but the country should not require her to go to the United States.”

Patients and their families undergo a rigorous interview process before they are cleared for transplants, said Dr. Victor Morell, Sumika's surgeon and chief of cardiothoracic surgery at Children's. Because the surgery is so expensive, economic factors can be an issue, he said. Morell said Sumika was accepted as a candidate because doctors at Children's knew her doctors in Japan. The family's ability to pay did not move her up the list.

“That would be completely crazy to consider that,” he said. “It's not like we are looking for kids from outside the United States for transplants. We have plenty of kids.”

Doctors told Sumika's family to stay in Pittsburgh for at least six months, but they have not determined when they'll go back to Japan.

“We didn't expect to find the donor that quick. ... I thought about the parents who lost their child. It just crushed my heart,” Mika Nagao said.

Luis Fábregas is Trib Total Media's medical editor. He can be reached at 412-320-7998 or lfabregas@tribweb.com. Staff writer Adam Smeltz contributed to this report.

Coming Monday: A native of Trinidad and Tobago gets a double lung transplant in Pittsburgh after hospitals in five countries turn him down.

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