Aboriginal donors needed for bone marrow registry.
There could be as many as 250 people in Canada in need of a bone marrow transplant at any given time. Some of them will likely be Aboriginal. Because some antigens (proteins that stimulate the production of antibodies) occur with different frequency in different groups, the registry is calling on Aboriginal volunteer donors to come forward.
"If you need blood, any ethnic group can have your blood type, but if you are from a certain genetic background and you need bone marrow, you are more likely to find your donor in your own community," explained Beverly Campbell, director of the Canadian Blood Services OneMatch Stem Cell and Marrow Network, formerly known as the Unrelated Bone Marrow Donor Registry. "It is important to have representation from Aboriginals in Canada because they have a unique typing we don't find elsewhere in the world."
According to information provided by Canadian Blood Services, there are currently about 220,000 committed donors registered with the network, and about 85 per cent of them are Caucasian, while only .5 per cent are Aboriginal.
The OneMatch Stem Cell and Marow Network, with almost 60 registries worldwide, provides Canadians with access to more than 11 million potential donors, Campbell said.
"We search each other's registries for volunteers willing to donate. Canadian patients receive a lot of stem cell products from other countries. Over half comes from outside Canada so it is important for Aboriginals in Canada to assist in making stem cell donations possible for patients in their community."
Stem cells (which are contained in bone marrow and grow into red and white blood cells and platelets) are used to treat diseases like leukemia, anemia, lymphoma, inherited immune dysfunctions and other cancers, said Campbell.
Registering as a donor is simple, she said.
"We are particularly looking for younger donors. They are the first choice. If two donors match equally well with a patient and one is 35, and the other 50, then the patient's physician would almost certainly select the younger donor. Male donors are preferred as they are larger in stature and may have more cells. But we want female donors too. Women tend to be smaller in size and have more antibodies developed through pregnancies. Antibodies can make it more difficult for the recipients. But finding a matching donor is what is most important."
The chance of finding a match donor within the family is less than 30 per cent, leaving locating a donor through OneMatch as the only remaining option.
"Many patients confronted with the news that they need a bone marrow transplant begin to worry about finding a donor," Campbell said.
"The Canadian Blood Services Unrelated Bone Marrow Registry was created to ensure that every bone marrow transplant patient is given the greatest possible chance of being matched to a donor. We understand that this is an extraordinarily difficult time in a patient's life, and we want them to know that the staff of the registry is committed to this task.
"Getting a donor is like throwing a rock in the middle of the river--the circles go out from the centre. You start with siblings first, then parents. Since the patient's markers are inherited from their mother and father, the further you get from the parents, the less likely there is to be a match. For example, I spoke to a lady with three children. One needed a transplant. The other two siblings matched each other in this case, but neither matched the child that needed the donation. Today a lot of people have only one or two children; the bigger the family, of course, the better the odds of a match. In other situations, children may be adopted or they may not know who their father is or where to go to find family members."
Registering to become a bone marrow donor is the first step. Donors can register online at www.onematch.ca or you can contact Canadian Blood Services by telephone at 1-888-2 DONATE (1-888-236-6283).
During the assessment portion, potential donors are asked to provide the necessary personal, health-related and contact information required to be added to the registry. Canada Blood Services staff will call the potential donor and arrange for him or her to go somewhere convenient, such as a health centre or hospital, to provide a blood sample.
"Once a person is identified as a potential donor by the blood sample, they will have to travel to the nearest transplant centre. The registry will reimburse for travel expenses. We do our best to make sure that any donor who is willing to do this will not suffer financially. We don't want to make it difficult to join but also not so easy that people will sign up and then not go through with the process. We want committed donors. This is not something to be done on a whim. It is not effortless but it is doable," Campbell said.
"I am awed by the dedication and caring of the donors. I've seen donors who go to great lengths to make a donation. One lady coming in a long way was driving instead of flying and it was winter. They ended up closing the highway after she and her husband were already on the way. They slept on a bench in a gas station and then kept going when the weather cleared. It is wonderful what people will do. It is not always that difficult, of course, but things sometimes happen," Beverly Campbell said.
As far as what a donor can expect to experience, Campbell said that may vary depending on whether the physician is looking for stem cells or has a patient who needs bone marrow or peripheral cells.
"If it is a bone marrow collection that is required, that means day surgery, probably with an anesthetic or an epidural. It is a painless extraction--a long hollow needle is inserted into the hipbone and the marrow is extracted from the centre of the large bone. Recovery takes a bit of time and the donor can be stiff and sore for a couple of days. If the doctor is looking for peripheral blood stems, the donor gets an injection of growth factor to stimulate the stem cells to grow. The stems are then removed from the blood. The donor recovers in a couple of days, generally feels more discomfort after the injections of the growth factor, and may experience bone pain a few days leading up to the collection. Most donors say that anything they experience in discomfort is overshadowed by what they are doing."
Someone donating through the OneMatch Stem Cell and Marrow Network will not be told anything about the recipient at the time of donation. Campbell said, "Some countries' registries don't ever allow contact. If your recipient is in those countries you will never know who they are. In Canada, you can ask for an anonymous recipient update after a year. You can sign a release and if the recipient agrees, you can contact one another. Many don't want that. So clearly we don't make any promises."
It is the responsibility of the transplant physician to request a search of the registry for a patient. Even though the patient doesn't contact Canadian Blood Services to get on the list, Campbell said the registry staff is happy to answer any questions patients may have about the search process itself, but more comprehensive information about the search is best provided by the patient's doctor.
Campbell stressed that, in order for the OneMatch Stem Cell and Marrow Network to work, people need to come forward and make a commitment. To Join OneMatch, you must be between 17 and 50, healthy, and willing to donate stemcells to anyone in need.
"We need you. We are here and what we do is wonderful but we can't do anything until people join the registry," she said. "We need donors from all communities and ethnic groups. This is something we can't fix with money or good will. Unfortunately, waiting until someone in your own family is sick and then getting tested is often too late. A search takes time and when someone is ill, they often don't have the time to wait weeks for potential donors to get tested. We need donors to come forward, get screened and onto the registry. Time is of the essence. Someone once said that the time to dig your well is before you are thirsty."
In order to raise public awareness of the OneMatch Stem Cell and Marrow Network, Canadian Blood Services is coordinating its first National Stem Cell and Bone Marrow Awareness Week from Nov. 3 to 10. As part of its efforts to get its message out to a younger and more diverse audience, the organization is partnering with HipHopCanada to host two launch parties for the newly renamed network, featuring performances from some of the biggest names from Canada's Hip Hop community. The first launch party is scheduled for Nov. 3 in Vancouver, while the second will take place Nov. 7 in Toronto. More information about both events can be found online at www.hiphopcanada.com.
By Linda Ungar
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|Date:||Nov 1, 2007|
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