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The Istanbul declaration, now translated into 14 languages and endorsed by more than 100 organizations, laid out an international consensus for organ transplant ethics and denounced organ trafficking and transplant tourism. Photo by Pierre-Philippe Marcou/AFP/ Getty Images
In late 2016, Dr. Francis Delmonico saw an unknown number coming up on his phone. The Vatican was calling.
“One minute please for the foreign minister,” said the voice on the other end of the line.
A controversy was brewing. Delmonico, a leading voice on ethical organ transplantation, had planned a February 2017 summit in Rome for representatives of more than 40 countries to discuss the ethics of transplanting organs and to sign a pledge to uphold high standards.
But there was a hitch: A key invitee to the forum was Dr. Jiefu Huang, who has led reform of China’s organ donation practices. Critics, including some in the Vatican, wanted at the summit no representatives of China, which for years sold and transplanted organs from executed prisoners.
Delmonico, however, saw the Chinese presence as a good thing. It was “an opportunity for them to proclaim a new day and be accountable” that the practice has stopped, he said. In fact, some of the Chinese old guard have attacked Huang because of his efforts to stamp out unethical and corrupt methods of obtaining organs.
The Catholic Church’s foreign minister, Archbishop Paul Gallagher, was calling for an explanation.
“Here’s an opportunity to do something that no one has been able to do thus far,” Delmonico recalls telling Gallagher. It was a chance to get China to sign a statement saying it is wrong to use executed prisoners’ organs.
At the hospital where Jatav was to have his kidney removed, he was told by three doctors that donating a kidney is “no different than giving blood.”
“They are part of the problem, but they are also part of the solution,” Delmonico said.
“‘Okay Frank, have your meeting,” Delmonico remembers Gallagher saying. “The pope knows you’re here.’”
Pope Francis did not attend, but Marcelo Sánchez Sorondo, the chancellor of the Pontifical Academy of Sciences did. In a significant development, China signed the summit’s statement condemning the use of organs from prisoners and advocating the creation of national laws to prosecute transplant-related crimes. Beijing’s two delegates were joined by 75 other signatories representing more than 50 institutions and more than 40 nations at the conference. Delmonico called it a “seminal event” in the fight for global reform.
Delmonico, a Harvard Medical School professor, has spent more than a decade focusing on China. At the same time, he has led the fight to establish global ethics principles that now govern how human organs are obtained and transplanted. The reforms have affected scores of countries on six continents. Still, organ trafficking is spiking in countries like Egypt and Pakistan, presenting new challenges to Delmonico and his colleagues.
At the Vatican conference, participants heard a number of stories about poor individuals whose efforts to sell their kidneys went awry. Los Angeles Times South Asia Correspondent Shashank Bengali told the story about a migrant laborer named Sundar Singh Jatav. Jatav, 23, was from a village in Northern India. He went to Mumbai, India, looking for work. In 2015, his boss told him he could make money selling his kidney and introduced him to an organ broker. Jatav was offered $10,000, enough to pay off his family’s debts. At the hospital where Jatav was to have his kidney removed, he was told by three doctors that donating a kidney is “no different than giving blood.”
His kidney was removed in March 2016.
But Jatav was never paid, so he leaked part of the forged transplant application, which stated, incorrectly, that he and the recipient of his kidney are relatives, as required by law in India.
According to LA Times reporter Shashank, the Indian police raided the hospital and stopped the recipient from receiving the kidney.
Jatav “fears retaliation by the ‘organ mafia’ and has requested police protection,” according to Shashank. “His appetite has diminished, he has bouts of dizziness, and he cannot walk for more than a few minutes without fatigue — symptoms he blames on the kidney procedure, even though such complications are rare. He does not have money to see a doctor,” Shashank reports.
The story of Jatav is not an isolated case. The organ traffickers who never paid him were arrested.
By bringing the stories of organ trafficking victims to the Vatican, Delmonico sought to mobilize the assembled transplant doctors from around the world and empower them to address the recent rise in trafficking.
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Dr. Jiefu Huang and his colleagues bow as they pay a silent tribute to a deceased patient who was willing to donate her organs, at a hospital in Guangzhou, Guangdong province in November 2012. Photo by REUTERS/Stringer
Delmonico’s Declaration
Starting in the mid-1990s, the world saw an increase in a practice called “transplant tourism,” a form of organ trafficking in which an individual travels to a country such as China or India and pays for an organ transplant in cash. Typically, the purpose is to circumvent wait lists in both the individual’s home country and in the country where the transplant is performed.
In many cases, transplant tourism marginalizes poor individuals in those countries who are pressured into selling organs. Those individuals are usually paid very little and receive inadequate follow-up medical care.
Organ trafficking had been on the radar of the World Health Organization for years. The agency had issued guidance on the purchase and sale of human organs at the World Health Assembly conference in 1987. But “WHO did not follow-up,” said WHO Clinical Procedures Coordinator Dr. Luc Noel.
By 2005, transplant tourism had grown to account for more than 10 percent of the world’s more than 90,000 annual kidney, heart and liver transplants. The rise worried the WHO and global experts, a situation one doctor described as “chaos.”
By 2005, transplant tourism had grown to account for more than 10 percent of the world’s more than 90,000 annual kidney, heart and liver transplants.
At the same time there was a split among medical professional organizations about whether organ trafficking was seen as a problem, Noel said. For example, in 2006, the International Society of Nephrology (ISN) had a questionnaire on their web site, polling its members on whether or not it would be permissible to buy and sell kidneys. To Dr. Noel, this reflected an ambiguous approach to organ trafficking. “You don’t carry a poll about should kidneys be sold or not, if you have clear [ethical] views” on the matter, he told the NewsHour.
Some transplant professionals saw organ trafficking as their responsibility to eliminate.
“The people who are engaged in this activity all went to medical school and they all got training,” said UCLA’s Danovitch. “They’re surgeons and physicians, and they’re nurses, and they’re anesthesiologists, and they’re hospital administrators.”
“It’s our problem to deal with it,” he added in an interview. “It’s our black mark.”
Delmonico feared the ISN questionnaire would be a setback to the cause. He called Dr. Mohamed Sayegh, who had been president of the American Society of Transplantation and worked closely with the ISN leadership.
“Mo, what can we do about this?,” he asked.
Delmonico and Sayegh met at the Four Seasons Hotel in Boston. They decided to convene a conference of doctors and professional medical associations, laying the grounds for what would become the 2008 Declaration of Istanbul.
The Istanbul declaration, now translated into 14 languages and endorsed by more than 100 organizations, laid out an international consensus for organ transplant ethics and denounced organ trafficking, transplant tourism and transplant commercialism. The Declaration brought together 78 of the 90 countries with an organ transplantation system.
The Istanbul conference also established a so-called “Custodian Group”: a network of doctors around the world that report to each other whenever there is a case of organ trafficking. The group also monitors the laws and policies of governments and medical institutions.
“It’s our problem to deal with it. It’s our black mark.”
The principles enshrined in Istanbul “made it very clear…what our standards are,” said Jeremy Chapman, former president of the Transplantation Society and the editor-in-chief of the group’s journal, Transplantation. “There could be no doubt about the profession’s disapproval of unethical forms of organ donation,” Chapman said.
Before the declaration, organ trafficking and transplant tourism were “a total mess,” said Dr. Jacob Lavee, founder of Israel’s largest heart transplant unit. Frank Delmonico, he said, was the driving force behind the improvements in global practices.
It was “Frank’s personal achievement to recruit, in almost every country in the world, key figures among the transplant world willing to cooperate and implement the declaration,” Lavee said.
Delmonico, 71, retired from performing surgeries about four years ago, and his role since then is more as a diplomat than a medical doctor. He has traveled to more than 70 countries and, by his estimates, has logged more than 700,000 airline miles in his years fighting organ trafficking and building ethical organ transplant policies around the world.
“This guy lives in a plane, lives in a suitcase,” Sayegh said. “He is maniacally driven for a cause.”
Delmonico passed up a more tranquil retirement for a grueling travel schedule and says he has no regrets. He recently traveled to eight countries in three months.
“In your lifetime, you get a chance to contribute,” Delmonico said during a Skype interview with the PBS NewsHour from a library at the Vatican, during a March trip to Rome. “Here’s a chance to contribute.”
Delmonico, who considered the priesthood as a young man, sees his work as a calling. Medicine for him is about “the whole dimension of the individual, not just a matter of organ or some organ problem, but the whole of the person. The spiritual side of the person as well.”
“That’s what made me become a doctor,” he said.
A bloody history
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Dr. Jiefu Huang, director of China’s National Organ Donation and Transplantation Committee, attends a news conference in Beijing, China in October 2016. While Huang wanted reform, some Chinese doctors were worried they would lose their sole source of organs for transplants. Photo by Jason Lee/Reuters
Delmonico’s work with China began in 2005 when he received a call from Huang who asked him to help with a problem. Huang at the time was China’s vice-minister of health. Delmonico was an advisor to the World Health Organization (WHO), a position he still holds today.
Huang told Delmonico that people from around the world were coming to China for transplants and that the organs were from executed prisoners, a practice the Chinese physician said he wanted to end. The international community condemns the practice as unethical. Delmonico agreed to work with China to develop a transplantation system based on voluntary live donations or from people who die in hospitals, rather than from executed prisoners.
While Huang wanted reform, some Chinese doctors were worried they would lose their sole source of organs for transplants. Other doctors and officials were making money by selling organs from executed prisoners and did not want the lucrative practice stopped, Delmonico said. Chinese hospital websites advertised kidney transplants for $62,000, and a heart transplant between $130,000 and $160,000.
To discourage organ profiteering, Delmonico and other Western doctors agreed to boycott all papers from China that relied on data involving organs from executed prisoners. Delmonico and his colleagues also penned an open letter to Chinese President Xi Jinping calling for the practice to stop as a way “to rid Chinese society of corruption.”
In December 2014, Huang declared on behalf of the Chinese government that starting on January 1, 2015, his nation would no longer use organs from executed prisoners.
Has China turned a corner?
Today, China is looking to expand its volunteer donor base for the estimated 300,000 Chinese patients on the organ transplant waiting list. Chinese volunteers now number just over 4,000, which is still low by international standards. But some experts say the transition from hardly any volunteer donors to the current number is a concrete sign of reform.
At issue is how the Chinese government defines legal death.
For many years, the government only accepted donation after circulatory death (DCD), which occurs when the heart stops beating. China did not believe in brain death. However, taking organs after circulatory death is less desirable, because once the heart stops beating, organs start to decay and there is little time to transplant them. That limits the number of available organs.
Chinese hospital websites advertised kidney transplants for $62,000, and a heart transplant between $130,000 and $160,000.
Delmonico pioneered the concept of donation after brain death and circulatory death (DBCD), which occurs when all circulation to the brain stops and consciousness is permanently lost. While legally dead, the donor still has a heartbeat, which gives doctors more time to find a match and complete the transplant.
“Frank helped us create a Chinese classification of organ donation, melding between brain death and cardiac death to overcome the cultural barrier of organ donation in China,” Huang told the NewsHour in an interview.
“Frank came in and helped us to revisit every step and help[ed] us find a way that [was] technically and ethically acceptable in China and the international community,” said Wang, the head of China’s organ transplant response system.
But critics say Delmonico’s declaration that China has turned the corner on using organs from executed prisoners could be jumping the gun, lacking firmer evidence of reform.
“Why rush to integrate China in the international transplant community without investigating on three decades of transplant abuse?” Dr. Torsten Trey, a founding member and executive director of Doctors Against Forced Organ Harvesting, wrote in an email to NewsHour. Trey also condemned China’s inclusion in the Vatican conference.
Also at issue is who was being abused. Dr. Jacob Lavee, President of Israel Society of Transplantation, says while China has admitted to using organs from executed inmates, it has not admitted that many of the prisoners were actually prisoners of conscience–political dissidents, ethnic minorities such as the Uighurs, and practitioners of Falun Gong, a form of Chinese meditation and exercise with a spiritual underpinning, among others.
The NewsHour spoke to Chinese practitioners of Falun Gong who were arrested and detained several times between 1999 and 2009. Wang Chunying, a nurse from Liaoning Province, described one incident in which she was forced to give blood. She suspected the purpose of the blood draw was to determine if she would be a good match for organ donation.
“The atmosphere was very tense and horrific,” she said. She resisted, she said, but was pinned down by nine policemen as they drew blood from her leg. Wang said the policemen claimed they were checking the prisoners to make sure they did not have infections, But she said since prisoners were treated badly, it did not make sense that detention officials would care if the prisoners were sick. “The living conditions were terrible in the reeducation camp. They didn’t care about whether we live or die. One of us got his finger cut through by the needle when working on sewing machines. The unit guard simply pulled out the needle, opened the case of the machine, put some oil from the sewing machine to the injured finger and then told her to go back to work.”
Lavee says because of stories like this, the boycott on China should continue until the country allows international inspections to verify that organs are not coming from executed prisoners.
“Frank is simply willing right now to close one of his eyes and be blind to what continues to go on while celebrating the fact that there has been some reform in China,” Lavee said.
Delmonico, who has visited China nearly a dozen times and toured transplant clinics, concludes China has made dramatic strides in reforming its transplantation processes. But he suspects that the practice of obtaining organs from executed prisoners continues, at least in part .
“I can say to you [transplant tourism is] markedly reduced,” Delmonico said. “But can I assure you or the rest of the world that it’s completely stopped? I can’t.”
A new form of slavery
Reflecting from a library in the Vatican in late March, Delmonico conceded he was disappointed in some ways with the Rome conference in February.
“It’s a great disappointment that [Pope Francis] didn’t come…to the conference,” Delmonico said, “and he didn’t come because of the Chinese problem.”
Delmonico said he anticipated the potential controversy but didn’t foresee its magnitude. Still, if he had it to do over, he would lead the conference the same way, including Huang and Wang as participants.
“I wouldn’t have the meeting without them,” Delmonico said.
A number of doctors who attended the conference said the pope’s endorsement of its mission not only added the Vatican’s moral authority that Delmonico sought, but the conference statement has become a tool to spur further action.
Newly energized, many of the more than 60 doctors that met in Rome have returned home, seeking endorsements for the Vatican summit’s principles and working to create new laws and regulations making it illegal to engage in organ trafficking.
In 2016, Pope Francis listed organ trafficking as one of the “new forms of slavery” and “true crimes against humanity.” The conference’s program included a handwritten note from the pope. It would be a good idea, he wrote, to “examine human trafficking and modern slavery.”
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