Japan Today

Japan Organ Transplant Network fights to change laws

By Karryn Miller

When 67-year-old Mr Tanaka talks about his late daughter, he refers to her as a “jewel box.” After the girl’s death in an accident in 2000, she donated seven organs — her jewels — so that others might live. (By law, the daughter’s full name, age and other identifying information can’t be revealed.)

But this story is exceedingly rare in Japan, where just 76 people have donated organs since the law allowing them to came into effect in 1997. This is compared to the 82 organs transplanted per day in the U.S. Despite the technology being available, Japan remains one of the most difficult places to get a transplant — especially for children.

The Organ Transplant law requires not only prior written consent from the donor, but also the family’s permission after his or her death. What’s more, only those over age 15 even have the option to donate, making it impossible for young children in need of new organs to find suitable donors in Japan.

This situation forces desperate parents of sick kids to look to Europe or the U.S. for help. But the cost of an operation overseas can be well over 100 million. Many families travel to Western countries for treatment, but organ brokers and dubious transplants in countries like China are also on the rise.

The Japan Organ Transplant Network (JOTNW) reports there are about 12,000 patients currently waiting for kidney transplants around the country. With only around 200 transplants performed each year, just 1.6 percent of these people can expect to receive a new, potentially lifesaving organ. The wait for a kidney can be up to 15 years; for a new heart it could be two or three years. “Not everyone is still alive after this length of time,” points out Juntaro Ashikari, JOTNW’s chief transplant coordinator.

Established under the auspices of the Ministry of Health, Labor and Welfare, JOTNW is committed to raising awareness of the issue and registering more donors. The group works with hospitals to help educate doctors on approaching bereaved families about donation. Other efforts include providing organ donor cards — available in English — that people can keep on their person.

But Ashikari notes that even when someone has a card in their wallet, they also need to inform family members of their intent. And while the Japanese-language cards can be picked up at ward offices and even some convenience stores, the English version is sent out only by request. Nevertheless, he’s hopeful of getting the word out. “Teachers could talk about organ donation in their classes, and companies could distribute cards to staff,” he says.

The lack of donors combined with a growing list of patients needing organs has led the government to consider new legislation. “There are three major proposals for changes to the law,” Ashikari says. “The major one is allowing donation in the case of brain death even if someone isn’t carrying a donor card, but with the family’s sanction. If this is approved, children under 15 will be able to donate.” Nothing has been decided but Ashikari remains optimistic that the change will occur this spring. Even if the law changes, we still need more donors.”

To get your donor card, email support@jotnw.or.jp with your name, address, phone number and the number of cards you require. See www.jotnw.or.jp/english for more information.

This story originally appeared in Metropolis magazine (www.metropolis.co.jp).

© Japan Today

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The ban on under 15s is quite bizarre. Almost like the right to life has been taken away, so surely some parents will fight it in court. Even go to the UN for example.

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Think of the number of organs that would be made available if the law stated that all useful organs will be harvested from anyone committing suicide.

On topic, I'm appalled that the government doesn't allow parents to save the life of their child if the child needs a transplant - that's very close to government-sanctioned murder. I donated to a fund for a child in Japan that needed kidneys and it cost her parents well over 100 million (someone donated the airline tickets which included a nurse and equipment) just for the operation. A shameful government.

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Even go to the UN for example.

Yeah that works!! Just like stopping killing of whales and dolphins!

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Welcome to Japan folks, it isn't meant to make sense to us Gaijin, it's far too uniquely unique for our faulty foreign minds.

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How absolutely backward and disgraceful for a so called developed nation...mind you,how much of Japan really IS developed ?

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Absolutely crazy here - a friend had a 12 yo nephew in need of a transplant and family and friends were forced to get the money to send him to the US. Fortunately for him the money was raised in time and a few days after arriving in the US he was lucky enough to get a transplant and is now back in school. I guess we are going to need people like him to enter into J politics and change the law. Either way though they still need more people to donate organs - 76 in 11 years!

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may you r.i.p. sou-chan

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about a month ago ,there was a documentary tv about a girl who needs a transplant but the parents cant afford the money to send her overseas.ridiculous,a so called developed nation with such crude laws.who is to be blamed?have not seen any japanese standing up for his or her right.in as much as they see many laws as outdated ,nobody stands up to fight for change.God save us

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Clarification, please. If just 76 people have donated organs since 1997, how are 200 kidney transplants being performed each year (perhaps those are total transplants - although the math still doesn't really seem to work out)? Do those 200 include out-of-country transplants? Did I miss a transition in the story or misunderstand a statistic or was something edited out? Thanks.

Is there additional information on the rationale behind the regulations and what may be culturally-based hesitancy? Understanding and resolving that could go a long way toward increasing support for donations in general and for children in particular. And let's avoid just calling it stupid, silly, backwards Japan, shall we? I'm pretty sure that sort of cultural superiority hasn't ever been particularly helpful in creating change anywhere.

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If the loss of face from being thought backward in the area of transplants causes officialdom to institute a more progressive transplant regime then "stupid, silly, backwards Japan" it is!

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