Why this Toronto man is trying to boost diversity on Canada's stem cell registry

After Tom Wong discovered he had a rare form of blood cancer, he found out very few people of Chinese descent had donated stem cells and finding a match was going to be difficult. Now that he's healthy again, he's trying to get more people of different ethnic groups to donate.

Asian, African and Indigenous people make up only a small percentage of potential donors

Tom Wong found a miracle match for a stem cell transplant in 2015, but now he's fighting to ensure there's a more diverse potential donor list in Canada. (Taylor Simmons/CBC)

In 2014, Tom Wong learned he had Myelodysplastic syndrome (MDS), a rare form of blood cancer.

The disease prevented his stem cells from maturing — meaning they couldn't carry oxygen, fight infections or help his body heal from bruises.

He found himself on the Canadian Blood Services Stem Cell Registry waiting for a match.

"They kept telling me that my best chance of a match was going to come from a male within my own ethnicity," he said.

But Wong found out a match from his Chinese background would be hard to come by.

Out of the 450,000 Canadians registered with Canadian Blood Services as potential stem-cell donors, 68 per cent are white and about six to seven per cent are Asian. Even fewer are Chinese.

"When I heard these stats I decided to try and do something about it," he said. "So I go out to communities to talk and go out to universities and corporate events just to get a more ethnically diverse mix into the database."

Canadian Blood Services says right now its registry is almost 70 per cent Caucasian. (CBC)

Five years after his journey began, the numbers haven't moved much.

The amount of diverse registrants has risen from 28 to 31 per cent , but the numbers for many ethnicities are still low.

For example, black and Indigenous donors each make up less than one percent of the registry.

Finding a match

According to Jonas Mattsson, director of the Hans Messner stem cell program at the Princess Margaret Cancer Centre, a successful match occurs when patients have similar human leukocyte antigen (HLA) systems, responsible for regulating the immune system.

"It's like a personal signature that we have on our own cells. Those signatures actually play a very important role in the immune system," he said.

(Submitted by Canadian Blood Services)

"It should be the same signature between the patient and the donor."

In some cases, a match can be found in a sibling, as half of your HLA system comes from your mother and half from your father.

If that's not successful, the next place to look for a match is in a patient's ethnic group.

Through his advocacy, Wong found one of the reasons why many Chinese people haven't signed up is because they don't want anything to be taken out of their body unnecessarily.

"I'm finding that there's more people ... that are more receptive now," he said. "I'm happy to hear that."

Sharr Cairns with Canadian Blood Services says one of the reasons why some people don't donate is because they're frightened of the process, but she says donating stem cells is similar to donating blood. (CBC)

Sharr Cairns, the Ontario territory manager for the Canadian Blood Services Stem Cell Registry, said she can't pinpoint why certain groups don't register, but she does believe many people are misinformed about how stem-cell donation actually works.

"I think what happens is a lot of people are frightened of the program," she said.

"It's very similar to a blood donation, so we hook you up to a machine that does all the work."

Cairns said although they have work to do to encourage more diverse adult stem cell donations, they are seeing more diversity through their cord-blood bank.

The program runs at Brampton Civic Hospital, and Cairns said that registry is up to 60 per cent diversity.

Cairns said at any given time, about 1,000 Canadians are looking for a stem cell match.

To improve the registry's diversity, she said people like Wong are the ones making a huge difference.

'He has been a great advocate'

"Unfortunately, with a lot of our programs at Canadian Blood Services, people tend to not really take notice until they see someone from their own circle of family or friends who is in need," she said.

"He has been a great advocate for us."

Wong continues to do speaking events in many communities, from Asian to Jamaican to South Asian.

A few weeks ago, he said students at a Bramalea Secondary School gave him hope.

He planned a swabbing event and 88 graduates turned out. That's crucial, he said, because men between 17 and 35 are ideal donors as their stem cells provide a better post transplant survival rate.

"I've never had more than 25 people at one event and these 88 kids were heroes," he said.

Wong found his match in Germany

As for Wong's case, he didn't end up finding his donor in Canada.

But through an international network of more than 33 million potential donors worldwide, he did find one.

"I found out that my donor was actually a woman from Germany," he said. "I was more than surprised, but man, I was feeling pretty blessed."

While on a business trip to Germany last year, Tom met his donor, Doreen. (Submitted by Tom Wong)

Now healthy, Wong is continuing to fight to ensure others can find their match.

"I'm not going to stop. This is dear to me and whatever weakness this created, it kind of made me stronger."