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Stem cell and bone marrow donation require commitment

On Sept. 3, David Smyth died at Juravinski Cancer Centre in Hamilton, surrounded by his loving family.

The 20-year-old student had leukemia - cancer of the blood or bone marrow. In the nine weeks between his diagnosis and death, David's only hope for survival was a bone marrow transplant.

A match was never found.

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David had a dying wish: that the stem cell and marrow registry expand dramatically so that others with leukemia have a better chance of finding a life-saving match.

Fulfilling that wish is a challenge that his family and friends have taken up with a vengeance.

At Trent University in Peterborough, Ont., where David was studying political science and history, they held a two-day clinic during which hundreds had their cheeks swabbed. A dozen other universities have pledged to do the same.

Moved by the family's initiative, the chief executive officer of the Beer Store has asked all staff across Ontario to get a cheek swabbed. KPMG, the accounting giant, is considering a swabbing drive.

Next week on Parliament Hill, Conservative MP Terence Young (the MP in the family's riding) and Conservative MP Joy Smith (whose husband had a marrow transplant in June to treat multiple myeloma) will have their cheeks swabbed before the cameras. They hope other Parliamentarians will do the same, then carry the message nationwide.

Mike Smyth, David's indefatigable father, has a lofty goal: to get two million Canadians registered in the bone marrow registry by September, 2012.

Currently, there are 260,000 people registered with the OneMatch Stem Cell and Marrow Network, which is administered by Canadian Blood Services ( CBS, a non-profit agency, runs the blood system and oversees registries to facilitate organs and tissue transplants, as well as stem cells and bone marrow.

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Stem cell donation does not have the profile of giving blood, for a couple of reasons. Unlike blood donations, you merely register then donate only if called upon.

What people donate are actually blood stem cells - which can be found in bone marrow, umbilical cords and in the blood. They are not to be confused with embryonic stem cells - which are far more controversial - but often are.

The donation, which is often life-saving, can be physically demanding, but more on that later.

The good news is that registering is easy. A donor's compatibility with a potential recipient can be determined with a DNA test and, as all viewers of CSI know, that requires a simple swab of the cheek with a Q-tip.

Volume counts because matching donors and recipients remains difficult. A donor must not only have the same blood type (A, B, AB or O) but have matching human leukocyte antigens (HLAs), of which there are six. Ethnicity also matters because members of the same ethnic group are far more likely to have matching genes.

In Canada, 82 per cent of registered stem cell donors are Caucasian. That is problematic in a multicultural country, particularly given that some conditions that can be treated with stem cells, such as sickle-cell disease, are far more common in African-Americans.

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Mr. Smyth's principal criticism of the registry is that CBS does not recruit aggressively enough. It is a passive process: You register online by filling out a questionnaire and get a swab kit in the mail. Anyone aged 17 to 50 who is in good health can register and, if a match is found, they will be asked to donate.

The criticism is, in part, valid. It is understandable that a family that has just lost a son would want millions of potential donors registered and would promote clinics such as those they have spearheaded in Ontario.

But CBS - which is financed by the provinces - has other pressures, namely financial ones. It costs about $5 to collect and test a DNA swab through the mail; when you do so at a clinic, the price jumps markedly. The swab itself does not produce "product" just an expense. But there is no reason CBS could not offer cheek swabs at its blood clinics.

The reality too is that having your cheek swabbed is easy. Giving stem cells or bone marrow is demanding. Having millions in a registry is not helpful if they are not wholly dedicated to going through with a donation when there is a potential recipient.

As part of the treatment for leukemia, doctors use chemotherapy or radiation to destroy stem cells, which are normally responsible for producing blood and the various components of the immune system. They then transplant stem cells from a suitable donor that will, in turn, produce healthy cells.

A stem cell donation is relatively simple: It's like a blood donation but it requires five daily injections of a drug called granulocyte colony stimulating factor beforehand and the donation itself can take up to six hours over two days.

Bone marrow donation is a form of surgery done under anesthesia; you get up to six punctures in the iliac crest, a part of the pelvis. It can hurt like the dickens and take weeks to recover.

This is a small price to pay to save a life - and the inconvenience pales in comparison to the suffering of someone with leukemia - but it requires a truly dedicated donor. Swabs should be registered with full knowledge of the commitment it entails.

Still, the grieving Smyth family is to be commended for their tremendous service to future cancer sufferers. They have raised the profile of the issue and are getting Canadians to seriously consider stem cell and marrow donations.

David Smyth's legacy will not be measured in cheeks swabbed but in lives saved.

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