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People Are Dying Because Canada's Stem Cell Registry Is Too White

Registries aren't at all reflective of the country's rapidly-changing population.
Roshlind Mance was diagnosed with two rare blood diseases earlier this year.
Roshlind Mance was diagnosed with two rare blood diseases earlier this year.

When Roshlind Mance began to complain of body aches this past summer, her family wasn't immediately alarmed. She was just a teenager, they thought. She would be fine.

But a little while later, when the Calgary high schooler nearly fainted while attending summer classes, her family rushed her to hospital. The news wasn't good.

Doctors first diagnosed Roshlind with aplastic anemia — a rare, life-threatening blood disease that blocks the bone marrow from producing blood cells. Then, she was diagnosed with paroxysmal nocturnal hemoglobinuria, another serious blood disease.

The Mance family.
The Mance family.

From that moment, Roshlind's life was upended. The bi-weekly hospital trips for blood transfusions started. She couldn't attend summer school, and her plans to stack up on extra-curriculars and advanced classes were halted.

She became so weak her dad had to carry her to the bathroom. Her mom took a leave of absence from work. Her sisters, Adrienne, 27, and Kirsten, 19, pulled back on their own commitments to help as much as they could.

And shortly after Roshlind's sweet 16, the desperate search to find a bone marrow donor to save her life began.

Against the odds

Stem cell and bone marrow matches rely heavily on inherited ancestral tissue type, so matches typically occur between people of similar heritage. Around 25 per cent of patients are able to find a match within their own family. The rest are forced to rely on an unrelated donor.

Roshlind, who is Filipino, faces an uphill battle: the adult stem cell donor database is only 0.85 per cent Filipino, Dr. Heidi Elmoazzen at the Canadian Blood Services told HuffPost Canada.

Neither Roshlind's parents nor her sisters were a match. So in August, the Mance family launched Match4Roshlind campaign. They have hosted several donor registration events in Calgary, Edmonton and Winnipeg since then.

There are 851,410 people of Filipino descent in Canada — 2.42 per cent of the Canadian population according to the latest population census. Some 655 of them have been swabbed so far as part of the campaign.

So far, no match.

Roshlind explains her condition as part of the Match4Roshlind campaign. Story continues after video.

A major shift

Almost 70 per cent of the global adult registry is white, so white patients in Canada stand a reasonable chance of scoring an anonymous donor match. But many non-white groups, including Black, Indigenous, East Asian and South Asian communities, remain critically under-represented in the world's stem cell registries, dramatically impacting minority patients' chances of surviving an array of life-threatening diseases.

As the face of Canada changes, the consequences will only get more grave. By 2031, one in three Canadians will belong to a visible minority and one in four Canadians will be foreign-born, according to Statistics Canada. For the offspring of the some 360,045 racially mixed couples in Canada, the possibility of finding a donor will be slimmer still.

"When you add blended ethnicities to that mix, it makes the matching more complex and the ability to find a match a steeper hill to climb, specifically for Canada," Dena Mercer, director of Canadian Blood Services' OneMatch Stem Cell Network, told The Globe and Mail.

So why are there so few donors of colour? Elmoazzen cites a lack of awareness, as well as considerable language barriers.

"Most people don't realize the emergency we have on our hands until they're faced with someone in their family or circle of friends who needs a transplant," she said.

Adrienne, who runs her sister's online campaign, agrees. She suggested that a lack of cultural awareness and skepticism around Canadian health-care practices also contributed to the lack of donations from people of colour.

"In the Philippines, there is no such thing as a stem cell donor bank," Adrienne told HuffPost. "The concept and how important it is wasn't taught to us. Many immigrants have the same lack of awareness."

Most people don't realize the emergency we have on our hands until they're faced with someone in their family or circle of friends who needs a transplant.Dr. Heidi Elmoazzen, Canadian Blood Services

Elmoazzen also stressed the need for "committed donors" — people who go through with the donation once they are identified as a match.

One study by the American Society of Hematology found that minority donors are more likely to opt out of participation than their white counterparts, citing religious objections to donation, more concerns about the risks and a greater likelihood of having been discouraged from donating.

"The fact that fewer potential donors of minority descent opt to proceed toward donation...when they are identified as a match greatly disadvantages minority patients who are searching for an unrelated donor," writes the University of Pittsburgh's Dr. Galen E. Switzer in the study.

The same study found, however, that minority donors were less likely to drop out if their social group was aware that they were potential donors — a scenario borne out when individual patients petition their social and community networks to become volunteer donors.

Leveraging those odds, many families have taken matters into their own hands and made headlines in the process, including Aaryan Dinh-Ali, whose Afghani-Vietnamese heritage shrunk his odds of finding a match, and Bille Nyugen, a friend of the Mance family who was diagnosed with T-cell lymphoma earlier this year. The Nyugens actually helped launch the Match4Roshlind campaign.

"I didn't know anything about running a website or fundraising," Adrienne said. "They had a lot of experience combing the country for a match for Bille. They were so kind to lend me their expertise."

Getting the word out

In 2014, friends and colleagues of Mai Duong launched a campaign of their own when she was given two months to find a Vietnamese stem cell donor.

The impact of the Save Mai Duong campaign — which featured the young advertising strategist and her then five-year-old daughter — reverberated throughout her native Quebec.

Some 2,000 Vietnamese-Canadians registered as donors. In the flurry, two Canadians and one American with critical blood diseases were able to find matches.

While Duong didn't find a match through the campaign, her life was saved through the donation of a compatible umbilical cord from an unidentified mother — another painless option for people considering stem cell donation.

Duong told herself that if she survived her ordeal, she'd set out widening the donor base for the tens of thousands of minority patients pleading for a match of their own; patients who didn't have the time or resources to campaign for themselves.

That's how Swab the World foundation was born. Launched earlier this week, Swab the World sets out to rebrand stem cell donation as simple, vibrant, intimate and non-white.

"It's a communication problem — most people have never heard of stem cell donations," Duong told The Montreal Gazette.

The foundation's central image features a POC couple locked in an embrace, and promotional materials encourage non-white people to "share your DNA" and "give the kiss of life." Calls for donor registration must be appealing to millennials: ideal stem cell donors are 17 to 35 years old.

Duong hopes to add one million donors to worldwide registries over the next 10 years.

For now, Roshlind's status at Swab the World is still "looking for a match." So is Maria's, a Filipino mother diagnosed with chronic myelomonocytic leukemia. Rico, a 13-year-old boy with acute T-cell lymphocytic leukemia, is in the same boat, along with 18,000 others looking for someone who may be able to save their lives, somewhere in the world.

The odds are daunting. But Adrienne's focus is trained on her mission.

"I asked the doctors what happens to Roshlind if she doesn't find a match," she said. "They never answer directly."

"I just want to work as hard and fast as I can to save my sister."

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