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Transplants set to increase

New law will help but education of the public still lacking: experts

by Natsuko Fukue

Japan boasts highly skilled surgeons, universal health insurance coverage, well-equipped medical facilities — and few organ transplants.

But this will change, experts say, now that the revised Organ Transplant Law is in effect.

Before July, when the new law took effect, anyone 15 or older who died from heart stoppage or was declared brain dead could be an organ donor provided there was prior written consent.

The current law drops the age restriction, meaning organs can be harvested even from children if the next of kin consent.

The changes have already raised the number of donors. Before 2009, there were fewer than 10 brain-dead donors a year. Since July that number has jumped by 16 in three months, bringing the total to 19 so far this year.

More brain-dead donors mean more functioning organs can be harvested, including the heart, lungs, liver and small intestine. This generally isn’t possible with people whose hearts have stopped.

“The total number of brain-dead donors will be about 60 a year. That is what experts have already estimated,” said Atsushi Aikawa, professor and chairman of the kidney department at Toho University.

Before the revision, there were cases in which people willing to donate their organs could not do so because they had never provided written consent, said Aikawa, noting the previous law was effectively preventing them from being donors.

Compared with the United States and Europe, the number of donors in Japan has been extremely low. According to the Japan Organ Transplant Network, there were 1.1 deceased kidney donors for every 1 million people in Japan in 2003, compared with 29.5 in the United States, 22 in Britain, 32.5 in France and 46.7 in Spain.

Apart from the legal hurdles, Aikawa argues that Japan has few donations because of a lack of knowledge and experience, not because of religious belief, which is often cited as an important reason.

“Some say Japanese don’t want to damage the body even after death from a religious point of view. But quite a lot of people register to donate their body to medical science,” he said.

He added that younger people appear more inclined to be donors, compared with people over 60, who are generally less willing to accept brain death as actual death.

When lawmakers were discussing the revision of the transplant law last year, some argued that the brain death issue was too controversial and sensitive to allow this physical state to be recognized as actual death.

Brain death, according to the Japan Organ Transplant Network, means an irreversible end to all brain activity. People diagnosed as brain dead are not getting oxygen to the brain, which is different from a vegetative state in which a person can spontaneously breathe.

Generally in cases of adults, the heart stops a few days after brain death, but medical experts say the hearts of brain-dead infants can keep pumping for years.

Other lawmakers meanwhile wanted the nation to be self-sufficient in organ availability. Because of the age minimum under the old law, Japanese kids had to go abroad for transplants.

According to Aikawa, European countries used to accept Japanese children for transplants, but Britain and France changed their laws to give foreigners lower priority. Germany then became pretty much the lone possibility, but it too changed its law. So now, practically speaking, Japanese kids can no longer go to Europe, he said.

Therefore, the U.S. has become the sole destination for young patients, but America is also focusing more on domestic recipients. Although there is no absolute limitation on the number of foreign recipients, “it’s fair to say that the (U.S.) policy is there to help ensure most transplant recipients are either U.S. citizens or permanent residents,” Joel Newman, spokesman for the United Network for Organ Sharing, said in an e-mail.

Aikawa thinks that is reasonable. “Japan has (transplant) skills, but we still go abroad. That must have been troublesome to the countries we’re depending on,” he said. “We should change that.”

Kalpana Abe, a doctor on the medical writing team at Mitsubishi Tanabe Pharma Corp. with experience in harvesting and transplanting organs in the U.S., said transplants in Japan should increase to avoid relying on other countries.

Japanese patients going to the U.S. “cannot be put in the same line with patients from Thailand or Vietnam, where the economic, educational and medical levels are different,” she said, suggesting that because of Japan’s medical prowess, its citizens should get transplants here so people from less-developed nations have a better chance of receiving organs in America.

There has still not been a brain-dead donor under 15, and experts said it will be a while before child donors are available.

As for adults, there has been an increase, but improving public understanding and adding more and better-trained coordinators — who seek out consent from families — are needed, Aikawa said.

Education for younger people is crucial, he said. Aikawa, who occasionally gives lectures on organ donations and transplants to junior high and high school students, said it is still difficult for doctors to go teach students about the subject because boards of education are hesitant.

“It’s not that we are pressuring them to become donors. Instead, we should give them the knowledge so they can judge for themselves,” he said.

Abe agrees.

“You can’t force people to be a donor. It’s voluntary, and that’s why it’s called donation,” she said. “But society needs to be educated on what transplants and donations are all about. The awareness (in Japan) is poor.”

Abe said people in the U.S., for example, are educated through the media, schools and nonprofit groups. “So at least they are prepared to accept (being a donor) at a hospital,” she pointed out.

Thanks to such education, “more than 86 million Americans are known to have registered as a donor through individual state registries,” said Newman of the U.S. transplant network.

In line with raising public awareness, the U.S. and Europe work to secure enough donor coordinators and to give them special training, especially to support grieving families, said Aikawa, adding that Japan lags in this aspect.

“We don’t have enough coordinators. They also need more training because donations involving brain-death cases are increasing,” he said.

According to the Japan Organ Transplant Network, there are only about 20 in Japan. But “if we have about 60 donors a year, we’ll need more coordinators,” he said.

Aikawa also argues that whether the deceased donate organs or not, grief counseling should be provided to families by a coordinator or a nurse, but training in this area, too, is insufficient.

In the U.S., an organ procurement organization under the United Network for Organ Sharing puts major emphasis on bereavement care training, said Newman.

“This is important in donation, because the request must come very early in the grieving process and not all families are ready to make a donation decision at that point,” he said. “Many families may still be in denial or anger, and the donation requester must be able to understand this and still try to make an effective request.”

Aikawa added that Spanish coordinators spend a lot of time learning about grief care, while Japanese do not.

“The law was revised, but that’s not enough. There are many things we should do to improve the situation,” he said.