U.S. beacon of hope for world's transplant patients

[Clark]

http://triblive.com/news/healthnews/6759722-74/transplant-patients-aguillera

U.S. beacon of hope for world's transplant patients
By Adam Smeltz

Five hospitals refused Kwesi Aguillera's appeals as he lay fighting to breathe, his life hinging on a double transplant for his disease-scarred lungs.

Rejections from Canada, Spain and Great Britain cooled his hopes. Doctors in his native Trinidad and Tobago watched helplessly, as the Caribbean republic is ill-equipped to offer the operation that can cost more than $500,000 in other countries.

Unlike the United States, many nations decline to accept international candidates to keep scarce organs available for their citizens.

Aguillera, 34, was disappointed but said he understood.

“If you have an extra-long wait list, you don't want to ‘waste a set of lungs' on someone else,” he said Downtown last week, eight months after undergoing his transplant at UPMC Presbyterian in Oakland. UPMC charged him a discounted price of about $375,000, he said.

Hospital officials would not discuss the cost.

“I can understand you're trying to save your own country and your own citizenship first,” Aguillera said.

Aguillera, a software developer, is among hundreds of international patients who count on open policies and transplant rosters in the United States to find lifesaving livers, kidneys and other vital organs from deceased donors. About 1.1 percent of the 58,693 candidates who joined the transplant list in 2013 were non-U.S. residents, according to the United Network for Organ Sharing, a nonprofit that runs the government-sanctioned transplant system.

Last year, American surgeons performed 224 transplants on noncitizen and nonresident patients using organs from deceased donors, a 20 percent increase from 2012, the Tribune-Review reported on Sunday. UNOS recast a monitoring rule in June 2012 for international cases at transplant centers.

Doctors across the country said the influx from overseas could climb again, as patients dealing with dire transplant shortages in their home countries turn to the United States, adding demand to limited domestic organ supplies.

While 79 people a day receive organs, 18 others die while waiting, according to the Department of Health and Human Services.

“We certainly don't believe that international patients somehow should have preferential treatment to the exclusion of U.S. citizens. But as a provider, we really don't look at a patient's passport,” said Dr. Brooks Edwards, the transplant center director at Mayo Clinic in Rochester, Minn.

The center performs about 900 blood, marrow and organ transplants a year. Edwards said its surgeons typically perform fewer than 5 percent on nonresident patients, in line with the monitoring rule that UNOS dropped two years ago.

UNOS had allowed audits of any medical center where international patients relying on deceased donors accounted for more than 5 percent of transplants. But no transplant center was audited, leading UNOS to drop the standard and start an effort to track how many patients arrive in the United States specifically for transplants.

Edwards said Mayo's international cases often involve living donors who offer organs to close friends or family members. When the practice takes a case from a referring physician, Mayo clinicians consider the patient's overall health and treatment options — but never the person's citizenship, following a 1984 federal law.

“Whether you're an international patient or a U.S. patient, you all go through the same process,” said Tania Matar, vice president of international services at Baylor St. Luke's Medical Center in Houston.

St. Luke's, which is among the oldest American centers catering to international transplant candidates, logs a lot of referrals from the Middle East, where transplants tend to be more rare, as well as from China, Europe, India and Latin America, executives said.

For other patients, China and India rank with the Philippines and Pakistan among medical destinations, according to organizations that follow transplant activity and illegal organ trafficking.

“I think the U.S. stands out for building in the opportunity for compassionate sharing when possible but recognizing that we can't ever let that overrun our own need. That's why we monitor it,” said Tom Mone, CEO of the Los Angeles-based organ recovery group One Legacy. “We're pleased to see it hasn't overrun our own national needs in any significant numbers.”

Mone said some countries are sending fewer patients here as their practices evolve. Organ donations in Japan have grown several hundred percent since its government eased donation rules a few years ago, Mone said.

For Aguillera, the software developer from Trinidad and Tobago, the United States was a more attractive option than less expensive care in India. His mother, Laurel Aguillera, cashed in her $75,000 retirement fund to help pay for the surgery at UPMC.

The family received nearly $200,000 in aid from their country's government, which evaluated Kwesi Aguillera and his rare case of chronic granulomatous disorder, an immune system inhibitor. Community fundraisers raised about $20,000.

Dr. Maria Crespo, a UPMC pulmonologist who oversaw Aguillera's care, said his surgery did not delay operations for other UPMC patients, but she couldn't say whether anyone listed elsewhere through UNOS might have received the same lungs.

International patients don't receive a higher priority, she said.

“He was competing like any noninternational patient,” she said. Aguillera is waiting for doctors to arrange logistics for his ongoing treatment at home; he wants to return to computer work by November. He and his mother are staying at Family House Neville in Oakland.

Laurel Aguillera said she will be grateful forever to the stranger whose lungs are keeping her son alive. She called the donation a sharp contrast with Cuba, which is hundreds of miles closer to their home and well known for health care. A Cuban doctor indicated that hospitals in the country would not provide the transplant, according to family members.

“The stranger behaved more like family than you did,” Laurel Aguillera said of her Caribbean neighbors.