When Yasuto Katagiri asked New York’s Columbia University in February to perform a heart transplant on Hoku, his 2-year-old son suffering from a rare form of heart disease called restrictive cardiomyopathy, the university had to turn him down because its 5 percent limit for accepting foreign transplant patients had already been reached.
Fortunately, his son was eventually accepted at Loma Linda University Medical Center in California, and Katagiri will begin raising donations to cover the estimated ¥100 million the operation is expected to cost, according to the nonprofit Japan Transplant Recipient Organization.
But Katagiri is one of many parents of sick children who question why they have to look overseas for a life-saving operation.
“Why can’t Japan, with its advanced medical facilities and technology, allow transplants for children?” Katagiri asked at an April 14 rally demanding the organ transplant law be changed.
Reflecting such sentiment, lawmakers are rushing to revise the controversial 12-year-old law that bans children under 15 from donating their organs, a rule that gives many recipients like Katagiri’s son no option but to seek transplants overseas.
And with the World Health Organization expected this month to officially ask member states to discourage people from seeking overseas transplants — following last year’s Istanbul Declaration that called for similar restraints — pressure is mounting on lawmakers to act fast.
Three amendments have already been submitted to the Diet. Plan A would scrap the age limit for donations altogether, plan B proposes lowering the age limit to 12, while plan C would maintain the current age limit while further restricting the legal definition of brain death, making it harder to rule that someone is brain dead.
A fourth comprehensive amendment that would toss out the age limit but tighten the terms for brain death is to be submitted to the Diet after Golden Week.
Due to the highly sensitive nature of the subject, however, lawmakers will be asked to vote on one of the four choices on an individual basis, disregarding party policies. It therefore remains uncertain whether a majority decision can be reached during the current Diet session, which ends June 3.
“We have kids waiting for transplants dying every week, and many more adults dying every day,” said Michikata Okubo, director of the transplant recipients organization. “A day passed is another dead body. We can’t wait any longer.
“This isn’t about personal views toward death. It’s about politics, about how we act as a nation.”
Okubo is upset by what he calls the lawmakers’ slow response. The law, he noted, was originally slated for revision in 2000, three years after it was enacted.
Organ transplants from brain-dead patients were first legalized in 1997. Prior to that, transplants could be conducted only after a patient’s heart and lungs had stopped functioning, at which point it was too late for major organs to be used for transplants.
The current law, however, requires written consent from the donor, as well as the family’s permission, and only people over the age of 15 have the option of donating their organs — those below that age are deemed too young to be able to make a decision on their own.
Certain organs can be donated from adults to children. An adult liver, for example, can be divided and transplanted into children.
However, young children in need of a heart cannot obtain a transplant from an adult due to the difference in size.
The effects of such multiple restraints is reflected in the minimal number of organ transplants from brain-dead donors in the past 12 years. There have been only 81 cases in total, of which 65 were heart transplants, compared with an average 80 conducted every day in the United States, according to the Richmond, Virginia-based United Network for Organ Sharing.
With little chance of receiving a transplant domestically, many patients have opted to go overseas. According to a health ministry study in 2006, Australia was the most popular destination for those seeking liver transplants, China the No. 1 choice for kidney transplants and the U.S. ranked at the top for heart transplants. Currently, the U.S. is the only heart-transplant destination because Germany, formerly the second-largest provider, tightened its rules in March.
A 61-year-old chief executive officer of an information technology-related company near Tokyo, who declined to be named, said he received a kidney transplant in China in late 2007.
The man, who was suffering from terminal diabetes, said his doctor at the Beijing hospital where the operation took place told him the donated kidney belonged to a 25-year-old executed prisoner from Shenyang.
“I’m doing great now, thanks to the transplant. It sure beats undergoing kidney dialysis every week and paying ridiculous sums to hospitals,” he said, adding that it would have been virtually impossible for him to receive a transplant in Japan, where there are currently 13,000 recipients on the waiting list, according to the Japan Organ Transplant Network.
There is much criticism, however, of such “transplant tourism,” because it often prioritizes rich foreign customers over citizens who are less well off, one reason for the imminent ban by the WHO.
Luc Noel, a WHO official in charge of transplants, stressed that seeking self-sufficiency is inherent in combating transplant tourism and maximizing donations from deceased donors.
“Seeking transplantation abroad inevitably leads to the purchasing of organs and legitimizes the ‘commodification’ of the human body,” Noel said, adding that with the universal shortage of spare organs, it is only in exceptional circumstances that compassionate transplantation can be obtained abroad without any search for profit.
“When an individual is diagnosed dead it seems to me that whenever possible the organ should be transplanted, whether the deceased is a child or not,” he said.
Complicating matters further is Japan’s sensitivity toward the concept of brain death, with many, including lawyer Tadahiro Mitsuishi, asking for further deliberation on the subject before moving forward.
“Media attention tends to focus on the recipients, but not on the donors or their families,” said Mitsuishi, a proponent of plan C in the Diet, arguing that donors are being reduced to mere instruments for those in need of organs.
“In Japan, death was traditionally recognized by the ‘sanchokoshi’ (three symptoms of death) — when the heart and lungs stop functioning and the pupils dilate. People are just not used to the idea that brain death equals actual death,” he said, citing the low prevalence of donor cards, which only 3 percent of Japanese have, as proof that people are still not ready to accept the concept.
Hiroshi Amemiya, honorary director of the National Pediatric Care Research Center, challenged Mitsuishi’s argument. He cited a recent Cabinet Office survey showing that 43.5 percent of the population, what he calls the “hidden donor advocates,” wouldn’t mind being donors.
“The percentage of donor card holders doesn’t reflect the true national consensus regarding the issue,” he said, adding that the main problem with the current law is that it restricts donors to only those over 15 who have filled out the cards.
Amemiya said plan A would solve such problems by letting the families of the deceased decide whether their kin should be donors.
“This will turn the ‘hidden donor advocates’ into ‘open donor advocates’ and increase the number of donors substantially,” he said.
At the April 14 rally, Yuki Okada, a 31-year-old mother who recently lost her 9-month-old child to heart disease just after she made the decision to seek a transplant overseas, was in tears as she made the following plea: “I’d like the Japanese to be able to save Japanese lives with their own hands.”