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lack of diversity hurts urgent search for stem cell donors
5 minute read
laura laycock collard, pictured with her husband joel, is half lebanese and has been unable to find a matching stem cell donor. supplied
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for nearly two years, laura laycock collard wasn’t feeling well, constantly battling fatigue, vertigo and nausea. she started undergoing tests to figure out what was wrong. in october 2019, at 39 years old, she got her answer: she had a rare blood cancer called chronic myeloid leukemia (cml).
affecting just over 5,500 people in canada, according to the canadian cml network, cml is a slow-progressing cancer, usually discovered by accident, like during a routine physical. while many people with cml can control their disease with oral targeted therapy, medications aren’t always successful, requiring a stem cell transplant for survival. when laycock collard’s body failed to tolerate the third drug she was put on, the search for a stem cell donor had begun.
at any given time, there are hundreds of canadians waiting for a stem cell transplant. while 25 per cent of people find a match within their own family, the remaining 75 per cent turn to strangers whose dna is stored in the canadian blood services (cbs) stem cell registry. the registry is made up of roughly 457,000 people across canada, excluding quebec which has its own registry with about 53,000 donors.
when a canadian needs a transplant, canadian blood services does an international search — every country with a registry reports into a global registry containing 38 million potential donors. for laycock collard, the result was discouraging: no match anywhere in the world.
“i’ve always been used to having control and having a plan and i’ve always been able to push myself through any kind of challenge,” says laycock collard, who lives in ottawa and worked as an aerospace engineer in the royal canadian air force until shortly after her diagnosis. “to have that taken away from me has been really unfamiliar and it’s been a bit unnerving to not be able to just push myself to get better.”
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stem cells develop into many different cells in the body including white blood cells which fight infection. when a person receives a transplant, their unhealthy stem cells are replaced with healthy ones from a donor. a transplant is used to treat nearly 80 diseases and disorders and, if successful, is usually a cure.
the matching process is a precise science. human leukocyte antigens are proteins used as a marker to match a patient to a donor. the match has to be incredibly close — nearly perfect, in fact — for the transplant to be successful. this means a patient’s best chance is to find a donor with the same ancestral background.
this raises a problem with the canadian registry: 66 per cent of potential donors are caucasian and less than four per cent are of mixed race. laycock collard is part lebanese, which fits the description of less than two per cent of canadians in the registry.
some of the myths around stem cell donation also contribute to the willingness — and interest — in donating. common misperceptions include that the process is painful, requires surgery, or that there is a long recovery process afterwards. but in fact, stem cells can be donated from blood which doesn’t require surgery, or cause pain to the donor. in cases where the patient requires stem cells from bone marrow, it is done under general anesthetic.
another challenge is that half the time, potential donors don’t actually follow through; they either can’t be reached or decide not to donate.
“we want to make sure that when people do join the registry, they’re committed to following through and helping anybody in need,” says dr. heidi elmoazzen, director of stem cells at canadian blood services. “when someone declines to donate, it can have significant impacts on a patient waiting because if we try to call someone and we can’t get a hold of them or they decide not to donate, we start that search process of trying to find a new donor again. this adds time to a transplant that sometimes a patient does not have.”
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canadian blood services recently started the process of contacting all 457,000 people in the registry, asking them to reconfirm their commitment to donating to someone in need.
the pandemic has added more complications to stem cell donation. swabbing campaigns used to be the primary way of recruiting people to the registry, but with restrictions on gatherings, all recruitment efforts have moved online, placing the onus on people to order swab kits themselves.
in the past, if a canadian found an international match, stem cells would be collected from the donor, safely packaged, and sent to canada via an informed carrier which involved a designated person boarding a plane holding a small cube of lifesaving stem cells.
“when the pandemic hit, with international border closures, travel restrictions and flights getting cancelled, it actually posed additional challenges for us to bring in stem cells from other countries to canada,” says elmoazzen. “now we’re even more reliant on our canadian donors.”
shannon adams was diagnosed with plasma cell leukemia three days before christmas. adams is undergoing chemotherapy and soon, her sister will be tested as a potential stem cell donor. if she isn’t a match, the 42-year-old mother of two will turn to the registry.
“when i was in my 20s, i sent a swab away and forgot about it, and then two years ago canadian blood services contacted me saying i was a possible match,” says adams. “they ended up not needing my stem cells but it’s just ironic that here i am hoping and praying someone is out there right now willing to do the same for me.”
both adams and laycock collard say they’re touched by the outpouring of support from their communities since being diagnosed. when laycock collard recently found out she didn’t have a match in the global stem cell registry, she launched a facebook page encouraging people around the world, especially those with diverse ethnic backgrounds, to join the registry. once full of energy — she’s visited 51 countries and has a zest for hiking and exploring the outdoors — these days she often needs help walking across the living room.
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“it’s scary that i don’t have a match but it’s touching to see how many people want to help,” says laycock collard. “canadians have the power to save someone’s life.”
update: while she waits for a donor match, laycock collard has been able to access a new drug manufactured by novartis that has yet to be approved by health canada through a compassionate use program.
to join the registry, please visit the canadian blood services website. a swab kit will be sent to you with pre-paid postage that you simply return in the mail. donors should be between the ages of 17–35. if you don’t live in canada, you can visit swab the world to find out if your country has a registry and how to get involved. you can follow along with laura laycock collard’s journey on facebook.
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