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Fighting bias against stem cell donation
THREE days before a 15-year-old boy with lymphoma was to receive an urgent, life-saving stem cell transplant in Shanghai, his immune system had been dramatically weakened to lessen the risks of rejection. He was vulnerable.
But at the last minute on May 5, the 22-year-old volunteer donor’s prospective in-laws forbade the donation. They said they would not permit him to marry their daughter because they believed donation would weaken his reproductive system and immunity.
They were wrong but many misconceptions about stem cell and bone marrow donations persist in China. Most donations today come from peripheral stem cells in the blood stream, and are not drawn from marrow in the spine or hip. Only 50-100ml are needed, and they are then transplanted into the patient through intravenous drip treatment.
“No reports have proved any negative influence on the donors’ health with more than 300,000 transplantations carried out worldwide since 1974,” says Zhou Xianglan, director of voluntary services at the Shanghai Red Cross.
And young donors go on to have babies without problems, she adds.
The donation and transplant were to have taken place on May 8 at Ruijin Hospital. Both the patient, surnamed Han, and the donor, whose identity remains confidential, are both from Hunan Province. They traveled to Shanghai where specialists were to perform the procedures.
The donor apologized profusely and repeatedly about not keeping his promise, but his future family came first.
Han’s parents begged in vain to meet him in person to plead for their son.
News of the donor backing out of the life-saving procedure — with minimal effects on the donor — made a huge splash and most people commenting online were outraged.
“If he didn’t want to donate, he should not have promised in the first place. His withdrawal is like killing the boy,” said one Internet user.
Those sentiments were widely echoed. Some people said the donor should be sued and compelled to give blood, others said donors should receive significant compensation as incentive.
Officials say voluntary donations are a fundamental principle in transplants and anyone can change their mind at any time. Further, the human body is not property for litigation, in spite of signed donation agreements. A few lawsuits have been filed by recipients against reluctant donors, but all have failed.
Han, the boy, was not told that the donor had canceled. Instead, his father, whose stem sells were only a 5-out-of-10 match, donated cells. The chances of rejection are high and the prognosis is not bright. The 100 days after donation are crucial.
Finding a stem cell donor is extremely difficult and depends on matching not only blood types but numerous other factors, such as proteins located on the surface of white blood cells and other tissues. The successful rate of stem cell pairing could be one out of several hundred thousand.
Current figures are difficult to come by, but a report by experts in 2011 said more than 1 million Chinese await stem cell or bone marrow transplants each year, but only around 40 percent find a match. The number of patients is expected to rise by around 40,000 a year.
China has around 1.83 million registered donors in the China Marrow Donor Program, but only around 11.6 out of 10,000 have actually made donations, according to a statement last year by Zhao Baige, vice president of the China Red Cross Society.
The comparable numbers are 232 per 10,000 in the United States and 535 in Germany, she said.
The 15-year-old boy was diagnosed last May with lymphoma, a blood cancer affecting the white cells of the immune system. Stem cell transplant, often preferred over bone marrow transplant, was considered his only hope.
To prepare his system for the transplant and reduce risk of rejection, he had undergone heavy radiation and chemotherapy (myeloablative therapy) to destroy his own blood-forming cells and essentially wipe out his immune system. He was at high risk of death from any infection.
When news broke about the donor backing out, the China Marrow Donor Program said in a statement that opposition from Chinese family members is a major reason that transplants do not go forward.
“All volunteer donors come with good intentions to help others, but it happens that some will withdraw because of objective or subjective reasons,” says He Yiping, administrative director of the Hunan Branch of the China Marrow Donor Program.
The national program says that of the 1.83 million registered donors, around 20 percent will withdraw during the long pairing and waiting before transplant.
Around 50 percent of US-registered stem cell donors eventually refuse to donate and the rate is around 60 percent in Asia, according to Japanese studies.
There is only one case in which a Shanghai donor withdrew, according to Zhou from the Shanghai Red Cross. Around 30 stem cell transplants take place annually and 301 successful transplants have taken place, she says.
Family objections are a major reason for donors to withdraw, she notes.
“Possible damage to blood-forming functions, the reproductive system and immune system after donation are the most common misunderstanding,” Zhou says. “Some elderly people still believe that a hole is made in the spine to collect stem cells from spinal marrow.”
However, stem cells are medically induced to migrate from the spine into the blood stream where they are easy to collect from a vein in the arm. Stems cells are extracted with equipment and the blood is returned.
“Some donors may feel soreness in the lower back after the injection, but they recover within weeks due to the strong regenerative capacity of stem cells,” says Zhou.
“We definitely want to help patients, but we won’t do it at the expense of others,” she says. “Donating stem cells is like spreading the seeds of life; it should be a joyful deed for all involved.”
It does hurt donors physically and psychologically if donors draw back but donors are not blamed since giving is a volunteer and nonprofit act, she says.
“All that we can do is repeatedly educate the donors to make sure that they have thought it over well and won’t drop out at the last minute,” Zhou concludes.
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