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Stem cell donor pitch starting to pay off
(China Daily)
Updated: 2004-02-18 09:28

Xu Guangxun received a regular blood test on Monday morning. The result showed that everything was normal.

Xu Guangxun receives injection of GM-CSF to increase haematopoietic stem cells in his peripheral (circulating) blood last Monday.
Xu, who has been staying in a comfortable hotel room in Beijing for the past week with his wife Li Dandan, is recuperating from some minor surgery performed last Thursday and Friday.

The operation was performed to collect stem cells from Xu for transplant in a patient undergoing treatment at the People's Hospital for leukaemia, or blood cancer.

Xu, who works for a pharmaceutical company in Beijing, said the fatigue he felt after the stem cell collection was almost gone. Over the weekend, he and his wife had already held a small party with their friends to celebrate the successful donation.

Xu and his wife are now ready to get their "discharge" from the hotel and return to their own home.

Xu was one of thousands of volunteers who contacted the Beijing Red Cross Society in May 2003 offering to sign up for donation of haematopoietic stem cells. He has now become the fourth actual donor in the country's capital, according to Jin Hui, director of the Haematopoietic Stem Cell Donation Centre of the Beijing Red Cross Society.

The big decision

In a large cabinet against the wall in her office, Jin and her colleagues keep all the registration forms filled out by potential stem cell donors like Xu in Beijing.

Thanks to the hard work of the staff and sufficient funding, the Beijing centre of the China Haematopoietic Stem Cell Donor data bank has been witnessing rapid expansion since last August.

More than 1,000 people register with the centre as potential donors each month.

The Beijing centre has already collected about 9,500 qualified blood samples from volunteer donors.

The central register of the national bone marrow and stem cell data bank, the Zhonghua Marrow Bank, now has a total of 100,000 qualified donors.

Jin is happy that volunteers keep coming to find out about stem cell donation.

On Saturday, February 7, Zhang Wei, 26, a resident in Beijing's suburban Daxing District, led a group of over 30 mostly young and middle-aged visitors to Jin's centre.

They sat in a meeting room and listened to Zhang Min, an expert on haematopoietic stem cells, who explained to them the basic facts about stem cell donation, HLA matching, and the stem cell collection process.

They were very attentive and most were jotting down notes. Some even recorded Dr Zhang's lecture with their digital video cameras.

Human Leukocyte Antigens (HLA) are proteins located on the surface of white blood cells and other tissues in the body.

When two people share the same HLA, they are said to be a "match"; that is, their tissues are immunologically compatible.

People have a 1 in 4 chance of being an identical match with their siblings. But the chance of match can range from 1 in 400 to 1 in 10,000 among people who are not blood relatives. For some rare HLA types, the chance of a match can be as tiny as 1 in millions.

As most young people in China are the members of one-child families, donation is the main source for haematopoietic stem cells for transplant in China.

"If the number of registered samples reaches 500,000, then 70 to 80 per cent of leukaemia patients in China should be able to find an HLA match and thus have a good chance of survival," said doctor Zhang.

Zhang was very persuasive, and several of his listeners began to fill in donation registration forms.

But stem cell donation is still a bit of a mystery to most people in China. After doctor Zhang's speech, the people at the meeting surrounded him, asking all kinds of questions.

Five of the group were freshmen from Capital Normal University.

Liu Haijin, a member of the university's Red Cross society, organized a society named Shuguang in his class to serve as a bridge between the Beijing Red Cross Society and voluntary stem cell donors in his university and community.

"I have long cherished a wish to become a stem cell donor," said Liu. "I found that a lot of people are eager to donate but have no idea what to do. So I was determined to build a bridge."

Majoring in biology, Liu already had some basic knowledge about stem cell donation. Also, he often goes to the Beijing Red Cross Society and brings back informational materials to give to his classmates.

Liu is also a resident of Daxing community, and through the community website he got to know others in the community who wanted to get involved in voluntary activities.

"When I put some information about stem cell donation on the BBS (Bulletin Board System), a number of net friends responded," said Liu.

Zhang Wei, a resident in the community and a Internet company employee, put up a form on the BBS. "Within just one month, 26 residents signed up on the list."

"We spend our holidays publicizing stem cell donation. It is something we can do," said Zhang Wei.

He said that haematopoietic stem cell project is long-term, so they have made it a permanent feature on the website.

Before the group left, about 10 had 5 millilitres of their blood drawn. Their blood samples will go through the HLA test in the laboratory, and all relative materials will be stored in the Zhonghua Marrow Database.

Careful consideration

The decision to donate stem cells should not be taken casually. The views of parents, relatives and spouses should all be considered, Jin said.

When Jin phones donors to inform them of an HLA match, it is common for her to meet resistance from the volunteers' relatives.

A meeting room for donors and recipients of haemotapoietic stem cells is specially provided by the centre to give them a chance to get to know one another.

Jin hopes that in the process of winning the understanding of donors' relatives, more of them may come to understand the process and may decide to become donors themselves.

Xu Guangxun was informed of a possible match last December.

Between then and February 9, the day he signed the donation agreement with the centre, he said he had been thinking about why he wanted to do it and had talked to several other donors.

"It was a well-thought-out decision," he said.

Last Monday, Xu and his wife had an extensive discussion with Jin and her two colleagues before signing the agreement.

Xu, in his 30s, once studied medicine. Despite this fact, Doctor Chen Hu, director of the stem cell collection group, still felt it necessary to explain every detail of the blood collection process to both Xu and his wife.

According to Chen, after donation, donors may develop symptoms similar to those of a cold, but they are temporary.

Although there have been more than 20,000 transplants in the world, several thousand of them in China, there is no record of any lasting effect on donors' health after the stem cell collection or after the injection of GM-CSF, a drug used to increase the haematopoietic stem cells in the peripheral (circulating) blood.

"If you have changed your mind, you simply don't have to sign the agreement," said Chen.

While pointing to the agreement, Chen added that some medical documents report symptoms like allergy and dizziness occurring among donors. But so far he had seen no clinical examples.

Xu signed the agreement, despite the fact that his wife had pointed out that it lacked clauses about donors' medical insurance and protection if serious after-effects should occur.

Xu's GM-CSF injection took only a few minutes. Before the stem cell collection started at the No 307 Hospital of the People's Liberation Army on Thursday, he and his wife had moved temporarily into a room the centre had booked for them in a nearby hotel.

Although Xu and his wife will return home shortly, Jin and her colleagues will follow Xu's health for a full year, she said.

Donor protection

Jin and her colleagues have to deal with many questions raised by donors or their relatives.

For instance, Li said she fully supported her husband, Xu Guangxun, in his decision to donate stem cells.

"However, nothing is mentioned on the agreement about which party will be responsible if something goes wrong during collection process," Li said.

It is a common question raised by the relatives of donors, according to Jin.

"We are still working on a possible legal document to protect the rights of the donors," said Jin. "As workers in the Red Cross Society, we pay great attention to the well-being of the donors."

Although there have been no reports of donors suffering from health problems, both Jin and Chen strongly believe that extra medical insurance for donors must be initiated as soon as possible.

"The donors are doing a good deed. It is our duty to make sure they feel fully secure," said Jin.

Another issue concerns whether parents should be notified when their children decide to become donors.

College students make up a significant percentage of the potential donor names in the database. "However, many of them don't tell their parents what they have done," said Jin.

Because of the limited age window for donors, 18 to 45, the Beijing Red Cross Society still plans to recruit donors from among college students.

"But I hope they consult with their parents before making the decision," Jin said.

Liu Haijin's parents objected strongly to his decision to be a stem cell donor. His careful explanation of the process finally dispelled their fears, Liu said.

Jin noted that donors are adopting a more responsible and mature attitude.

"I plan to be a donor after I get married. I see it as a kind of responsibility to my future family," said Zhang Wei.

Since last November, four HLA matches have been found through the database and successful transplant operations have been made.

Several more patients have found matching stem cell donors listed in the database and are waiting for their transplants.

The first two donors are boys, both from single-child families.

"When they were lying on the bed waiting for their blood to be taken, I felt they were so lovely. I was touched to the bottom of my heart," recalled Jin.

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