Japan has a new organ transplant law, which recognizes brain death as death and could make younger donors possible:
The Health, Labor and Welfare Ministry is set to begin discussing the criteria by which doctors would diagnose brain death in children under 15 under the revised Organ Transplant Law enacted Monday.
The ministry also will examine how to confirm whether potential donors did or did not intend to donate their organs.
The revised law has paved the way for children under 15 to become organ donors, which is prohibited under the current law enacted in 1997. A bill to revise the law passed at the Monday plenary session of the House of Councillors with 138 votes in favor of it and 82 opposed. Twenty lawmakers were absent or abstained.
The existing criteria for recognizing brain death apply to people aged 6 and older. A health ministry research team of medical experts prepared a draft of criteria for children under the age of 6 in 2000.
Not surprisingly, prominent supporters of the revised law include families of potential recipients:
On June 23, Koki Sampo, from Aoba Ward, Yokohama, and his wife, Yuki, lost their 1-year-old son, Ikki, who had been suffering from a severe heart disorder. He died in the United States after undergoing heart transplant surgery there.
Ikki was diagnosed as suffering idiopathic dilated cardiomyopathy in April 2008, when he was just 6 weeks old.
“My mind went into a blur the moment the doctor told me the name of the disease,” Yuki, 29, said.
The couple decided to go to the United States after Ikki’s condition worsened at the end of the year and he suffered temporary heart and lung failure. The family arrived in the United States in April.
Sampo said he was told several times by medical staff at the U.S. hospital that they should have come to the hospital much earlier, when Ikki’s condition was not as serious.
Ikki was able to undergo transplant surgery in late May. However, his parents’ dream of being able to take their son back to Japan in a healthy condition did not materialize.
Ikki’s funeral was held on July 3 in Yokohama. When Sampo, who returned to his job last week, heard the news of the revised Organ Transplant Law being enacted he said, “I hope this means there will be fewer patients and families who have to go through the same kind of sad experience as we did.”
“I can’t understand why Japan, which has one of the world’s highest standards of medical care, is unable to make progress when it comes to organ transplants. Why did Diet deliberations on this bill take so long? My son wasn’t able to receive a transplant operation in this country, but I hope Japan will become a nation that can save the lives of as many people as possible–even just one life.”
Opponents include families that have gone through the agony of deciding whether a loved one is brain-dead:
Akemi Nakamura, 45, from Ota Ward, Tokyo, had a daughter who was declared brain dead by a doctor at the age of 2 years and 8 months. However, with the aid of an artificial respirator, she was able to live until her heart failed when she was 4. During that period, her hair and nails grew, and she grew more than 10 centimeters taller, Nakamura said.
“My daughter continued to live [after being declared brain-dead]. It was only the form in which she lived that changed. Just to feel the warmth of her body filled me with so much love,” Nakamura said.
The revised Organ Transplant Law allows people to become organ donors under the premise that people who are brain dead are legally deceased. To transplant organs from people who have been declared brain dead, in addition to a diagnosis of brain death from a doctor other criteria such as confirmation of respiratory cessation also have to be fulfilled.
Family members of people judged to be brain dead also have a right to refuse the transplantation of their organs.
However, Nakamura expressed concern. “The enactment of the revised Organ Transplant Law will make families like us who have been living happily feel anxious,” Nakamura said.
Another woman’s daughter was a teenager who survived a traffic accident in a coma:
Masako Ide, 60, serves on the board of an association of families of traffic accident victims. One of Ide’s daughters, a third-year high school student, was in a traffic accident on her way to school in 1990. She was immediately taken to a hospital but was declared brain dead 12 hours later. She died after her heart stopped four days later.
“Urging victims’ family members, who are in a state of confusion following unexpected accidents involving their loved ones, to decide [if they agree to have the victims] be diagnosed as brain dead or agree to organ donations will further confuse families and force them to shoulder even more burdens,” Ide said. “Measures should be taken to improve the emergency medical system and pediatric care system.”
It’s impossible to avoid pitting the concerns of those who will die without donated organs against those who could live longer if life support weren’t terminated in order to harvest their organs, but it can be (and has been) argued persuasively that the existing Organ Transplantation Law in Japan was extremely conservative and weighted against recipients:
The enactment of the Organ Transplant Law [in 1997] was greatly anticipated by patients with no other means for survival than obtaining a transplant as well as those involved in the transplanting process. This new law was expected to have a major impact on transplanting in Japan, but its regulations turned out to be extremely stringent. The donations of organs by a brain dead donor is permitted only if “…the donor expressed in writing prior to death his/her intent to agree to donate his/her organs and agree to be submitted to an authorized brain death declarations, and his/her family members (spouse, parents, siblings, children, grandparents, grandchildren, and live-in family members) did not object to the donation.” In addition, the law states that “only persons 15 years and above can express an intent to donate.” This stipulation has greatly reduced the possibility of transplants to small children; heart transplants to small children have become impossible.
There are other problems, of course. Japan is very rarely at the leading edge in medical treatments. It tends to let the U.S. and other countries with researchers willing to forge into unknown procedural and ethical territory make the gains (with the attendant instructive mistakes). And the caution means fewer transplants are performed, which encourages people to go elsewhere if they have the necessary resources. This article, to which I was first referred by a friend, is three years old, but I haven’t seen anything to indicate that the information doesn’t remain basically current:
A survey of Japan’s overseas organ transplants, published by Japanese Ministry of Health, Labour and Welfare shows that from 1984 to 2005, at least 522 Japanese people underwent organ transplant operations. Among these operations, 151 cases were conducted in 50 foreign medical institutes, of which 34 were carried out in China—accounting for 75 percent of the total.
According to Japanese media, the number of Japanese patients accepting organ transplants in other Asian countries has notably increased in recent years. A Tokyo doctor who treated nine patients who came back from China with new kidneys complained, “The Chinese hospitals didn’t provide any donor information, nor did they provide the patients with usage of immunizing agents.” He pointed out that four out of the nine patients died within two years of the operation. “The survival rate after organ transplants in China is terrible compared to that in Japan.”
These incidents have triggered another round of debates in Japanese medical circles over the human rights and ethical issues related to organ transplants. Related medical associations have forbidden doctors from getting involved in the foreign organ transplant trade. Debate has also started in Japan over modifications to laws related to organ transplants first implemented in 1997.
So getting your transplant in Japan is ideal, assuming you can actually get an organ. It’s not hard to see why Japanese seem to have been flouting the PRC ban on selling organs to foreigners.
The Japanese patients spent an average of about 595,000 yuan (US$87,000) each for their operations at an unidentified hospital in Guangzhou, capital of southern China’s Guangdong Province, the report said. The patients received treatment in the hospital for up to 20 days, the report said.
The money covered fees to the hospital and doctors as well as traveling and accommodation costs in China, according to the news agency.
Some patients were admitted to hospital under Chinese names as requested by the hospital, Kyoto said. Most of the organs they received were probably from executed prisoners, the report said.
The Japanese official denied it was organ trade as none of the patients had paid their organ donors and no introduction charges were paid.
The report added that no Japanese had had such surgery since the Beijing Olympics last August because of “international pressure.”
China banned the trade in human organs in May 2007, and prescribed that foreigners were not allowed organ transplants in China to protect limited resources.
China is the world’s second-largest transplant nation after the United States, with about 5,000 operations performed in the country each year.
Even in the United States, waiting for organs is a big problem, of course, but donors might not be as scarce as they seem if the process were reformed. Virginia Postrel had a piece in The Atlantic
last week specifically about kidneys:
For those who survive long enough to get transplants, the wait routinely lasts years. The odds are particularly bad in large cities. Take the nation’s largest transplant center, the University of California, San Francisco. In 2008, its surgeons did an impressive 347 kidney transplants, including 231 with organs from deceased donors. But 5,271 people are on UCSF’s waiting list—meaning that, relying entirely on deceased donors, they would expect to wait an average of almost 23 years. If, like Steve Jobs, who recently got a liver transplant in Memphis, you can travel great distances on short notice, you can register all over the country. But few kidney patients are that flexible. They wait, they get sicker, and, too often, they die.
…
Outlawing payments to donors is ostensibly a way to keep the system fair, giving rich and poor an equally lousy chance of getting a kidney. But wealthier people can already more easily register at distant centers with short lists. They’re also more likely to have friends and relatives who can afford the nonmedical expenses that living donation often entails, including time off from work, child care, hotel rooms, or cross-country travel. (It is legal for recipients or third parties to pay such expenses, but, unlike medical costs, they are not covered by insurance.)
Patients with enough money and the right networks have yet another option. They can go abroad, to countries where the authorities sanction or ignore payments to living donors. That’s how Henry David got his new kidney.
Virginia discusses donor pairing and chaining in ways that don’t require new legislation but do present practical challenges. The possibility of paying donors for organs may make the gesture seem less saintly, she writes, but it would provide real incentives in line with the transfer of value involved.