Cancer fight puts focus on lack of minorities on stem-cell donor lists

A Quebec woman’s desperate online plea for a compatible stem-cell donor in her bid to fight cancer a second time is shedding light on the lack of minorities on official lists in Canada and abroad.

Mai Duong finds herself battling leukemia again and doctors say they would like to proceed with a transplant of bone marrow or cord blood stem cells within a month.

But Duong, 34, has discovered that locating the right person can be a needle-in-a-haystack challenge, particularly for those who are from a non-Caucasian background.

“This is a global problem,” Duong, who is of Vietnamese origin, said in an interview from her room at Montreal’s Maisonneuve-Rosemont Hospital.

“We can’t do a scavenger hunt every time someone has this type of problem.”

Duong, who returned home a few days after being interviewed, said a recent bone marrow biopsy showed no signs of cancer. She will now begin four weeks of maintenance chemotherapy, which is given in lower doses to assist in prolonging a remission.

The mother of a four-year-old girl, Duong successfully fought off acute leukemia in 2013 with chemotherapy. She had to terminate a 15-week pregnancy to undergo the treatment. Duong was in remission until a blood test revealed leukemia had returned this past May.

“Seventy per cent of people who had that type of leukemia were just cured with chemotherapy and unfortunately I’m in the 30 per cent,” she said.

The diagnosis and a lack of a match in her family has touched off a mad scramble to find a fellow Vietnamese donor. An online campaign has taken that hunt global.

“I have cancer, I had a relapse, I don’t have a bone marrow (donor) — these are things I cannot change,” Duong said. “So I said, ‘what can I do about it’?”

Duong works in advertising and understands how quickly a cause can go viral. So her story has been told and shared through an ambitious social media campaign being promoted by family and friends. Her voice can also be heard in radio ads and there are billboards about her search in cities right across the country.

In a video from her hospital bed, she asks members of the Vietnamese community to share the video and get tested using a swab kit.

“If I’m not compatible with you, perhaps you will be compatible with a future Vietnamese person in need,” says Duong.

Despite looking all across Canada and more than 70 other international bone marrow lists, a match has yet to materialize.

It’s a numbers game: minorities are dramatically under-represented in Canada and abroad.

Internationally, only about one per cent of the 24 million listed donors are of Asian background.

Canada Blood Services, which manages the stem cell and marrow registry outside Quebec, says 340,837 people are currently registered in the rest of the country. Of them, 71 per cent are Caucasian, with the rest qualifying as “ethnically diverse” or of unknown origin.

Hema-Quebec, the organization that manages the province’s list, says about three per cent of the 47,000 stem-cell donors are of Asian descent and only a fraction of those are Vietnamese. The ratios are similar among international donors and Vietnam doesn’t have a registry of its own.

Duong believes the problem is twofold — a lack of awareness plus the fact many people who moved to Canada haven’t made donation a priority because their primary concern was establishing themselves.

Apart from finding a match, Duong’s aim is to raise awareness about the issue, with her daughter Alice on her mind.

“If my daughter has to go through what I’m going through, I want to make sure the pool of donors is there for her,” she said.

Laurent-Paul Menard, a spokesman for Hema-Quebec, said Duong’s story has resulted in a spike in the number of people signing up in recent weeks.

Menard said the agency has amassed 1,700 new registrants since Duong’s campaign started a few weeks ago, including nearly 1,000 people who indicated they were Asian. Normally, they do about 2,500 registrations for an entire year.

“When you’re a Caucasian, you have a 60 per cent chance of finding someone compatible, but when you’re not, the numbers drop drastically,” Menard said.

“The main reason this situation happens is that non-Caucasians are extremely under-represented on these registries — both here in Canada and the situation is similar around the world.”

Some people are lucky: about one-third find a match within the family. The saliva swab takes little time to complete and even those on the list have only a three per cent chance of getting called one day to donate, Menard said.

Duong demonstrates a remarkable resilience and positive attitude in the face of the daunting task of finding a donor.

“You have to understand that I was told in May that I had cancer,” Duong said. “So I had the time to deal with it — I did cry, I did get angry — and at a certain point I realized that the cards have been dealt.”

Duong’s husband, Vlad Stesin, said the online campaign came together quickly thanks to generous friends.

“If you or someone in your entourage doesn’t have leukemia or some other blood cancer, chances are you just don’t know about bone marrow donation and it just shouldn’t be that way,” Stesin said. “We just wanted to reach out and communicate with as many people as possible.”

Stesin is convinced that something has to happen. The international nature of the search means a match could come from anywhere —marrow from somewhere in Europe or cord blood from a new mother. Quebec is home to one of 40 cord blood banks worldwide.

Duong says she’s been floored by the response to her campaign, with countless emails and messages making it hard to keep up.

What is needed now is that elusive match.

“That’s (public support) what has been keeping me going,” said Duong. “I have the world with me against cancer, so hopefully we’re going to win.”