The case shocked Taiwan. In late August, five transplant patients were given organs despite tests prior to the operations by National Taiwan University Hospital (NTUH) showing that the donor was HIV-positive.
NTUH’s transplant team, which did four of the transplants — National Cheng Kung University Hospital did the other — failed to double-check the test results prior to the operations. When the team’s coordinator communicated the positive HIV test result by telephone, it was not clearly heard by the person on the other end of the line.
An investigation carried out by the Department of Health found NTUH responsible for two major administrative errors, but the case reverberated far beyond that, revealing the procedural and cultural barriers hindering the nation’s organ transplant system and stoking debates over who should get organs to begin with.
The NTUH organ transplant coordinator, for instance, was initially blamed by hospital officials for not more emphatically stressing the positive test result, but the health department ruled that it was the physician’s responsibility to actually look at the test report before making the final judgement.
“More encouragement should be given to organ transplant coordinators. Without them, organ recipients would not be able to receive crucial transplants,” Organ Procurement Association secretary-general Wu Ying-Lai (吳英萊) said.
The case also showed gaps in how potential organ donors are screened and registered. The mother of the donor, who died when he fell off the roof of a house, did not know her son was HIV-positive, but she was still heavily condemned by some media and members of the public.
“[The family] unknowingly donated HIV positive organs, but their intent was good,” Wu said.
As devastating as the case was to the five organ recipients and their families, it might have raised awareness of the long line of people waiting for transplants and encouraged more people to consider organ donation.
As of Sept. 27, there were 7,612 patients waiting for organ transplants, with 76 percent of them awaiting a kidney transplant and 14 percent needing a liver. However, only 520 patients have received transplants with the organs of 156 donors in the first nine months of this year.
Still, after the organ transplant scandal made headlines, online organ donation registrations more than doubled, from 931 in August and an average of 900 a month last year, to approximately 2,200 last month, Wu said.
That is a significant jump in a country where only 7.2 per 1 million people have registered as organ donors, much lower than the 20 per million in the US and European countries, Taiwan Organ Registry and Sharing Center deputy chief Liu Chia-chih (劉家熾) said.
Liu and Wu both hope the case will help shatter the social and cultural barriers that have made Taiwanese reluctant to register as organ donors.
Among the social obstacles relating to organ transplantation are the fact that death remains a taboo subject in Taiwan and that people believe in the importance of keeping a corpse intact, according to the organ registry center.
These beliefs and superstitions, Wu said, go beyond simply keeping people off donor lists, as they can make it difficult for donor families to deal with the stress from the experience even years later and deter further interest in the process.
Speaking from her own experience, Wu said that when her older brother died in 1996 at the age of 39, it was difficult for her family to agree that his organs should be donated.
However, what came after was even more agonizing, Wu said.
In her case, as in many others, families began second-guessing their decision and saying that their actions were cruel to their deceased relatives.
“Families wonder whether they did the right thing by unplugging a relative’s life support system and whether the person’s life could have been extended had their organs not been donated,” Wu said.
“One of my uncles from China said our family probably had bad karma in a previous life, which is why my father had to donate his son’s organs in this life: to acquire better karma. That really hurt,” she said.
Other donor families have reported similar struggles, egged on by folk beliefs that have made it more difficult to deal with their grief.
In one case, Wu said, a woman became depressed when a neighbor who claimed they could see the spirit world said her deceased husband was standing behind her and blaming her for donating his organs without his consent.
Then there was a comment by a feng shui master who claimed that the souls of people who donated their corneas would be unable to find their way in the afterlife. Cornea donations plummeted immediately after the off-hand remark, Wu said.
The agony of donor families can be further magnified by hospitals, which intentionally segregate donors from recipients.
Wu said it would mean a great deal to donor families if they could receive word from doctors about how the organ recipient was doing.
That would reassure the donor family that the life of their loved one was being extended through another person, Wu said.
Wu’s organization has helped donor families deal with the stress. She said one way they help families come to terms with organ donation is by making stuffed animals out of socks and attaching their stories to the toys they make, which are then sold at fundraising events.
However, nothing comforts donor families more than knowing they have helped improve or save a life, Wu said.
Heart recipient Liao Mei-li (廖美立) has helped the organization by reaching out to donor families.
Liao, an energetic woman in her sixties, was told by doctors five years ago that she only had a month left to live if she did not get a new heart. Though reluctant at first to have the surgery, when a heart became available, she agreed to the operation. She said the transplant made her feel energetic and youthful again.
However, she is also grateful for her ties to donor families.
“Without them I wouldn’t be here,” she said.
Liao is one of the few lucky patients in Taiwan, as the distribution of organs and the concept of fairness remains a tricky issue.
There is constant debate in the medical community about whether organs should be given to patients in the most critical condition or to those most likely to recover, Liu said.
There is also debate over whether organs should be distributed without bias and in complete disregard of a person’s faith, social status, age, ethnicity or criminal record, Liu said.
In an ideal world, such factors should be irrelevant, but in reality, some argue that children should get priority over the elderly because of their age, while others say older people should top priority lists because they have made so many contributions to society, Liu said.
The best solution could be to distribute organs according to the severity of a patient’s medical condition, but even that proposition can spark furious debate within the medical community.
“Even when we prioritize distribution of organs according to how serious the patient’s condition is, there are hospitals that will complain about giving away organs they worked hard to obtain to another hospital and [leaving some patients] on the waiting list for years,” Liu said.
To illustrate the complexity of the issue, kidney patients often have to wait up to 30 years before receiving a new organ, medical expert Lee Po-chang (李伯璋), chairman of the Transplantation Society of Taiwan, was quoted as saying in a China Times report last year.
While organs are generally distributed to patients with the most serious conditions, kidney transplants are exempted from this general rule, Liu said.
“Kidneys are distributed according to transplant organ compatibility,” she said. “The main reason is that kidney disease is not classified as a critical illness in Taiwan and patients can rely on dialysis for many years.”
Taiwan’s organ transplant environment still faces many challenges and whether the recent HIV-organ transplant incident will affect real change in the system is open to question.
In such a difficult environment, Liao said patients should be thankful to donor families for organs that help them extend their lives, even if from an HIV-infected donor.
“If I were one of the HIV organ recipients, I would still be very grateful,” Liao said.
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