Miki Taira’s dreams of becoming a nurse were shattered when she was diagnosed with leukemia at 19. Years of chemotherapy left her with a critically weakened heart. Now her friends are trying to raise 90 million yen to pay for a heart transplant in the United States.
“The situation here is hopeless,” Taira, now 37, said by e-mail from her hospital in Osaka, where she is being kept alive by a ventricular assist system and is unable to see visitors. “When I was accepted as a transplant candidate by an American hospital, it felt like a rope being thrown down from heaven.”
In Japan, about 80 patients are waiting for a new heart. Last year, not one found a donor in this country — a gut-wrenching situation that has fueled a debate about whether a landmark law intended to regulate organ transplants is in fact preventing them.
Backed by patients’ advocates and some doctors, a group of lawmakers wants to rewrite a 6-year-old law that allows organ donations by people diagnosed as having suffered an irreversible loss of brain activity — brain death.
Their proposal is forcing a re-evaluation of how to balance donors’ rights with recipients’ needs in a nation where the definition of death remains contentious and many people worry that doctors can’t be trusted to make the right decisions.
Years of deliberations on those issues culminated in a 1997 law that recognized brain death for the first time. Until its passage, a patient could be declared dead only after his or her heart had stopped, meaning only organs such as kidneys and corneas could be harvested.
At issue now is whether conditions for becoming a donor are too strict.
Unlike the U.S. and other countries where organ transplants from brain-dead donors are routine, Japan does not permit families to say yes on behalf of a donor who has not previously expressed such a wish in writing.
Critics of the law say that’s unrealistic — and blame the provision for the shortage of donors.
Since 1997, only 29 people in Japan diagnosed as brain dead were designated as organ donors, though an estimated 3,000 people suffer brain death each year.
The result is that demand for organs has overwhelmed supply: 171 patients have signed up for heart transplants since the procedure was legalized, according to the Japan Organ Transplant Network. But only 20 have found donors here.
Fifty-five would-be heart recipients have died, and another 75 continue to wait.
That’s why people like Taira are looking in other countries, including the United States, Germany and Canada. Dozens have gone overseas since 1997. A foreign donor is the only option for children since the Japanese law bans organ donations from those 15 and under.
“Most people never think seriously about the possibility of brain death,” said Taro Kono, a lawmaker from the Liberal Democratic Party. “Families make funeral arrangements for their loved ones because they know best what the deceased would have wanted — organ donations should be the same.”
Kono says the numbers show why.
In surveys, more than a third of Japanese say they would be willing to become donors after brain death, but only about 5 percent have filled out donor cards.
It’s similar in the United States, where 55 percent of respondents to a Gallup poll said they were willing to donate their organs, but only 28 percent had signed donor cards. Still, about 5,000 brain deaths of Americans result in donations each year.
The big difference is that relatives of Americans who are eligible as donors but haven’t signed cards give their permission about half the time, said Dr. Paul Terasaki, a professor emeritus at the University of California-Los Angeles who specializes in tissue typing for transplants.
“Nobody really wants to face death, so the number of people carrying a donor card is small in the U.S., too,” Terasaki said. “I think the number of donors in Japan would be dramatically different if the consent law was changed.”
Kono argues the shortage of brain-death donors in Japan is dangerous for the healthy, too, since it’s given impetus to transplants of livers and lungs from living donors.
The country recorded its first living-donor death last year, when a mother who gave part of her liver to her daughter fell into a coma and died of liver failure.
That was especially sobering for 41-year-old lawmaker Kono, who made headlines two years ago when he had the same operation to save his father, a prominent politician.
“It’s crazy to be cutting open healthy people when we could be harvesting organs from the brain-dead as long as their next of kin agreed,” Kono said.
Those who object say the real reason the numbers are low is a simple one: Many Japanese aren’t convinced that brain death is the end of life.
Polls show public opinion remains split six years after the concept was first recognized, and Eiji Tsunakawa, a member of a coalition of civic and religious groups opposed to changing the law, said that taking the decision out of a patient’s hands would violate the most precious of individual rights.
“It’s partly emotional, partly common sense,” Tsunakawa said. “How can you say that somebody whose heart is beating and body is warm and sweats is really dead?”
Those misgivings are reinforced by cultural precepts; disfiguring a body is considered disrespectful in Japan. Some people also worry that doctors may be too quick to give up on patients who could be saved and pressure families into agreeing to transplants.
Japan’s first heart transplant, in 1968, ended in controversy when the doctor was investigated for allegedly removing the organ from a patient who wasn’t dead and transplanting it to another who didn’t need it. He was never indicted, but no more heart transplants were allowed until the 1997 law.
Distrust of doctors also reflects the patient’s sense of powerlessness in a nation where second opinions are frowned upon and winning legal redress for malpractice is difficult.
“In Japan, doctors aren’t supposed to be challenged,” said Tomoko Abe, a Socialist lawmaker — and herself a neurologist. “Changing the consent provision would put families in a very difficult situation.”
Abe says the law must not be changed until there is a “social consensus” on brain death.
But that won’t come soon enough for Taira.
Friends seeking contributions to pay for her heart transplant had raised about 67 million yen as of early June — about three-quarters of the estimated total cost. She hopes to leave in early July.
“Of course we’d prefer to keep her here,” said Tomoyuki Yoshioka, a friend coordinating fundraising. “But there are so few donors, and Miki has so little time to wait.”