Patients in need of bone marrow transplants said Monday they are troubled by requests for cash donations from an organization that acts as a go-between between them and marrow donors.
The patients, mainly people with leukemia, said they want the Japan Marrow Donor Program to stop its practice of sending slips for bank transfers to patients when they register.
Some patients feel pressured to donate out of fear that unless they do so they will be disadvantaged.
“We are already suffering from the huge financial burden placed on our shoulders,” one patient said. “The slips are akin to threatening letters, holding our lives captive.”
The organization already charges a mediation fee of 600,000 yen to recipients of bone marrow transplants.
Officials at the Japan Marrow Donor Program said they lacked consideration in sending the slips without proper explanation and will take rectifying measures.
“We’ve decided not to send the bank transfer slips at the time of registration since that may cause anxiety among patients,” said Genshi Oishi, managing director at the organization.
Oishi said the organization will “consider what to do” about its practice of sending the slips once every six months.
The organization, which depends heavily on public subsidies for its operating fees, said it fell into the red in 2001 due to the growing number of bone marrow transplants, and started that year to send bank transfer slips to patients registering for the first time.
The slips were sent with a pamphlet explaining the organization’s financial difficulties and a request for a donation.
Six months after registration, another bank transfer slip was sent together with a pamphlet.
The organization initially sent the slips with a letter explaining that donations were voluntary and would not affect the mediation procedures, but then stopped sending the explanatory letters.
Currently, the organization receives annually about 90 million yen in donations from individuals, of which 60 percent to 70 percent are from patients and their families.
To deal with the shortage of funds, the mediation fee charged to patients was raised this year to around 600,000 yen, up from about 400,000 yen.
Patients said it is not reasonable that they should be the ones called on to pay for the organization’s financial woes.
“We need drastic measures to solve this problem, such as making it possible for meditation fees to be covered by health insurance,” a patient said.
The government-run health insurance program covers the medical costs for the bone marrow transplant but not the fees for the mediator, which offers services such as matching the patients and donors and checking the patients’ health condition.
The program was set up by volunteers and doctors in 1991. It has mediated for bone marrow transplants for more than 5,000 patients since then.