Montreal cancer patient rallies against limited number of minority stem cell donor registrants

A public campaign launched by a Montreal woman in search of stem cell donors in her fight against leukemia has exposed the struggles that visible minorities can face in Canada and abroad due to a lower number of willing donors.

In a widely-shared YouTube video 34-year-old Mai Duong pleaded for Canadians of Vietnamese descent to consider joining Canada’s OneMatch stem cell and marrow network after being told that doctors were not able to find a match in the current registry.

Duong, 34, is a woman of Vietnamese descent who was born and raised in Montreal. She was diagnosed with leukemia last year and relapsed in May, when she was told she would need a stem cell transplant.

"That was pretty rough," Duong said in a video posted to YouTube. "What was worse was when the doctors told me a couple of weeks later that they did not find a match for me for the bone marrow, even though I was on an international list."

As it turns out, it is exceedingly difficult for many visible minorities to secure bone marrow and stem cell transplants. Most donors in America and Canada are Caucasian, and the Montreal Gazette reports that some doctors consider the lack of donors from other backgrounds a crisis.

America's National Marrow Donor Program, for example, has 10 million members, but 67 per cent of them are white. Ten per cent of registrants are Hispanic, while only seven per cent are Asian and another seven per cent are African American.

Laurent-Paul Ménard, a spokesperson for Héma-Québec, told the Gazette that of the 47,000 Quebeckers registered as stem cell donors, only 0.5 per cent are of Asian descent.

The Canadian Blood Services OneMatch stem cell network doesn't have as disparate a breakdown, but still faces shortages. According to Canadian Blood Service spokesperson, there are more than 340,000 people registered to the OneMatch network, which covers all of Canada outside of Quebec. Of those, 71 per cent are Caucasian while 26 per cent are split between minority groups.

And while Canada is linked to international donor registries, there are none in Vietnam and many other countries. The struggles faced by those attempting to establish donor registries in those regions are often logistical. The BMJ, formerly the British Medical Journal, notes that attempts to establish an Indian bone marrow registry were shelved by terrorist attacks in 2008.

But there are other issues, namely cultural and religious aversions, to such donations. Religious objections have been raised in regards to everything from organ donation and blood transfusions to stem cell research.

The Pew Research Forum has compiled a list of official positions and interpretations on the use of stem cells, which indicates that a debate can be made for or against the practice under nearly every belief structure.

But when it comes to acting as a stem cell donor, there is an indication that religious, or at least cultural mores, may play a role in who decides to participate.

According to a study published in the Journal of the American Society of Hematology last year, Caucasians are significantly more likely to find a match for stem cell transplantation through the U.S. National Marrow Donor Program.

An investigation found that 79 per cent of white patients found a potential donor, while other groups were not as lucky. Fifty per cent of Asians and Pacific Islanders were able to find a match, while 44 per cent of Hispanics and 33 per cent of African Americans were able to do likewise.

This was attributed to less common human leukocyte antigen – the proteins that must match for a successful donation. More to the point, the pool of potential donors was notably lower.

According to the study, Caucasians have been found to be 30 per cent more likely to move beyond the early stages of the donation process. While the reason for that disparity remains unclear, the study did note that white donors were found to have fewer religious objections to stem cell donation and had more trust in the way stem cell donations would be handled.

Stem cell transplants were considered rare until about a decade ago. While the first transplant was conducted in 1957, they have only recently become widely used. The Worldwide Network for Blood and Marrow Transplantation announced that the world's one millionth stem cell transplant was done at the start of last year.

Of those one million transplants, 53 per cent were done in Europe and 31 per cent were done in the Americas. Just 15 per cent were done in Asian regions and one per cent was done in the Eastern Mediterranean and Africa.

With limited access to acceptable donors internationally and a concerning level of donor participation inside North America, people in Duong’s situation will continue to have problems finding a match while in the most dire need. Canada’s access to stem cell transplants is only as strong as its donor list. Everyone, from every background, should consider applying to register.