More bone marrow donors are needed to save the lives of people with deadly blood diseases, according to the Japan Marrow Donor Foundation.
The Tokyo-based bone marrow bank will celebrate its 10th anniversary on Tuesday with a campaign to find more donors. “Our goal now is to secure 300,000 donor registrations so that the great majority of patients with serious blood diseases will be able to find a donor,” said Kenichi Hanioka, general manager of the foundation.
As of the end of October, 144,382 people nationwide were registered with the foundation as donor candidates and 3,689 bone marrow transplants between unrelated people had been performed through the organization.
However, about 1,000 patients registered at the foundation have no available donor, said Hanioka, a former journalist who quit a major national daily to work for the organization after losing his wife to leukemia in 1997.
Transplants are lifesaving for many recipients, and rewarding for donors.
Toshie Shiga of Iwaki, Fukushima Prefecture, underwent a bone marrow transplant five years ago to treat leukemia. In March she married Masahiro Shiga, a fellow bone marrow recipient.
“Our donors not only cured our disease but dramatically changed our lives,” Masahiro said, adding that both are doing volunteer work to gather more donor registrations.
Kazufumi Nezu of Kawaguchi, Saitama Prefecture, became a donor in April and said he hopes to do it again.
“It is extremely nice to know I am doing something great to save somebody by using a renewable source in my body,” the 34-year-old architect said.
The donation also gave him an opportunity to think about his own health.
“After learning that my blood type matched that of a patient and I would be a donor in the near future, I took care not to catch a cold or other infections, ate well and kept myself fit. I had never cared for myself that much before,” Nezu said.
Finding the right match
A bone marrow transplant, an established treatment with a history of nearly three decades, is the most effective treatment for nearly half of the patients with fatal blood diseases, including leukemia, hypoplastic anemia, congenital immunodeficiency and malignant lymphoma.
About 6,000 people develop serious blood diseases in Japan each year. Of them, some 2,800 are candidates for transplants, according to experts. However, only 25 percent to 30 percent of all patients can find donors within their families.
Successful transplants require a match between the donor and recipient’s human leukocyte antigen, or the type of white blood cells.
Among siblings, the chance of a match is about 25 percent. But among people not related by blood, the chance of a match is between one in several hundred and one in tens of thousands, according to the foundation.
The Japan Marrow Donor Foundation was established by the government in 1991 at the urging of patients, their families and supporters.
Despite progress made by the foundation, including achieving its initial goal of obtaining 100,000 donor registrations, there is still a lot of work needed before it can offer extensive and fair opportunities for treatment, staff members said.
“It’s still imperative to increase the number of donor registrations,” Hanioka said.
Mieko Uezu of Naha, a volunteer promoting donor registrations in Okinawa Prefecture, said the foundation often targets blood donors as potential bone marrow donors.
“Blood donors are highly motivated to do something good for others. It is much more effective to ask blood donors for bone marrow donor registrations than to do it for the general public,” she said.
Over the past two years, the foundation’s efforts in Okinawa resulted in the registration of 3,500 local donors, Uezu said.
International cooperation is also important for the bone bank.
American donors at the Minneapolis-based National Marrow Donor Program have so far sent bone marrow for 82 Japanese patients who could not find donors through the Japanese bank.
Marrow banks in Taiwan have supplied marrow for 15 Japanese patients and South Korea has done the same for a further five.
The Japanese bank has helped 52 people outside Japan, including 38 South Koreans and four Americans.
“About 7.4 million people have registered as donor candidates around the world. The donor pool is precious for patients, and we also want to make an international contribution in the field,” Hanioka said.
Bone Marrow Donors Worldwide is based in Leiden, the Netherlands. Its members include 49 bone marrow banks in 37 countries and 25 umbilical cord blood banks in 17 countries. The Japanese organization joined in April 1998.
Facing a financial struggle
Despite progress, foundation staff said a lack of government funding remains a major stumbling block to the foundation’s activities.
The foundation is affiliated with the Health, Labor and Welfare Ministry, but a government subsidy of 272 million yen has covered only 22 percent of the foundation’s budget of 1.27 billion yen for fiscal 2001. The shortfall is met by contributions, which total 18 percent. The remaining 60 percent comes from patients and their families.
The foundation has been in the red for the past four years.
“We believe our efforts have resulted in increasing the number of bone marrow transplants year after year. But it also means we have increasingly needed bigger budgets,” Hanioka said.
At a time of tightening budgets, however, the government has reduced its subsidy for the current fiscal year from the year before, he lamented.
The shortage of funding is a major reason for the shortage in the number of staff who coordinate transplants by liaising between donors and patients.
Many lives could be saved by creating a better coordinating system that shortens the waiting period for patients, Hanioka said.
In 2000, about 180 patients who successfully found donor candidates died before they received their transplants.
“Despite this situation, health ministry officials have even suggested that we should not work harder but do our job within the scope allowed by the small budget,” he said. “We cannot accept that because we know the number of transplants carried out is directly related to the number of lives saved.”
Hanioka and others at the bank have repeatedly told ministry officials that promoting transplants is actually cost effective.
“A patient with a serious blood disease dies after 24 million yen on average is spent for medical care during the last stage of life. Meanwhile, a bone marrow transplant costs about 15 million yen and the patient can survive,” he said. “It is beyond discussion which is better.”
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