Canada’s stem cell registry isn’t diverse enough to help those who need it
For the Canadians in need of a stem cell donor, it can be a matter of life and death.
But the search for a match becomes exponentially more difficult if you are a member of an ethnic minority — and especially if you’re of mixed race.
Only 31 per cent of the roughly 440,000 donors Canada’s stem cell registry are ethnically diverse, and that figure falls to just three per cent if you look at those who are mixed race.
The wait, says those who need donations most, can threaten lives.
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Jeremy Chow of Victoria, B.C., registered to be a donor in 2010 at the age of 33 after seeing a commercial on TV about the need for stem cells from ethnic minorities.
“I was healthy and into sports and I’m in the trades,” Chow said during an interview.
“So I thought if I could help someone and it only takes a day or something most of my time, then great.”
Eight years later, in November 2018, Chow fell ill while living in Victoria. He began suffering from chest pains, then dizziness and nausea, prompting a visit to the ER.
He was told it was a virus and sent home.
“Typically Jeremy can power through anything and I don’t even have time to notice if he’s not feeling well because he’s still helping me around the house,” said Chow’s wife, Evelyn.
“But this time was a little bit different.”
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Days later, the father of two went back to the ER after his symptoms didn’t get better. Doctors ran tests and came back with distressing news — Chow had acute myelogenous leukemia, a cancer that starts in blood stem cells and manifests rapidly.
He was rushed from Victoria to Vancouver and was informed that he’d need a stem cell transplant for a possible cure. Chow says a search of the Canadian donor registry and the 23 million donors across the world revealed only a single match — himself.
Chow, who’s half-English and half-Chinese, and Evelyn were shocked at the news, saying their experience has served to highlight a little known piece of information.
“Unless you’re in the situation, you don’t really know about the donor shortage [for mixed-race people],” said Evelyn.
Why are diverse donors needed?
To understand the need for an ethnically-diverse stem cell donor registry, it’s helpful to understand the science behind stem cells themselves.
Compatible stem cell matches are determined according to DNA markers known as Human Leukocyte Antigens (HLA).
The closer the match between the HLAs in two individuals DNA, the better the outcome of a possible stem cell transplant.
Because HLA is inherited from an individual’s mother and father, there’s a chance that people can be compatible with siblings. But due to the random distribution of HLAs, it’s not a guarantee — often working out to a 25 per cent chance.
The rest must rely on a donor outside of their family.
“You’re much more likely, like I said, to find a match within somebody of the same ethnic or racial background as your ancestral background,” said Dr. Heidi Elmoazzen, director of stem cells and Canadian Blood Services.
She said that’s why it’s important to build a registry that is “reflective of the unique diversity that we have here in Canada” so as many people as possible can get a match.
Although Chow’s leukemia has responded to treatment and is now in remission, there’s no guarantee it won’t return.
That’s why his search continues.
Chow is currently one of roughly 25 people of mixed ancestry looking for a stem cell match in Canada.
But his experience has pushed him and his wife even further. They’ve started a campaign under the name Match4Jeremy, that they hope will encourage more diverse people to register as stem cell donors.
“Like I said, if there’s people out there that can be helped and you know that’s a win, that’s a great thing, right?” Chow said.
Evelyn agrees, saying that there are other mixed-race people who may be in a similar situation and that they hope their campaign will “help everyone out.”
“I want to make sure that we have, or at least we tried, to get that match for Jeremy and everyone else,” she said.
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How to become a donor
Elmoazzen says Canadian Blood Services is looking for donors between the ages of 17 and 35 as they often provide better outcomes when treating the more than 80 diseases and disorders that respond to stem cell donations.
The process of registering is simple and you can do it at home by registering on the organization’s website and filling out a short screening questionnaire.
If you meet the criteria they’ll send a package in the mail.
Swab the inside of your mouth with the four cotton swabs, seal it and send it back.
Canadian Blood Services will then run a few tests on the swab, creating a profile that will allow those who need stem cells to be matched with a possible donor.
The donation process is even relatively painless compared to what most people believe about the process.
“People often think that if you’re donating stem cells it involves a surgery, but actually 80 per cent of stem cell donations are collected from what we call peripheral blood,” said Elmoazzan.
Donors are hooked up to a machine and given medication that pushes the stem cells out of the bone marrow and into the blood stream. The machine will then draw blood — extracting the stem cells in the process — before being fed back into the donor’s body. Elmoazzan described the process as similar to a lengthy blood donation.
It’s only in 20 per cent of patients that the stem cells must be extracted directly through the bone marrow, a process that involves inserting a needle into the donor’s hip and collecting it.
And with that simple of a procedure, it doesn’t matter how far away you are from your potential match — even if you’re on opposite sides of the country.
Elmoazzen says it can still make a difference.
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