Stem cell donations are largely underrepresented for diverse groups
Less than 30 per cent of registered potential donors are of diverse ethnic backgrounds
Features / June 8, 2021
Correction: The Runner regrets errors made in the previous version of this story. Registered potential donors of diverse ethnic backgrounds are not less than three percent on the Canadian registry. “Less than 30 per cent of registered potential donors are of diverse ethnic backgrounds.” There is not a 15 per cent chance of a match for siblings. “One in two per cent chance, or a 50 per cent change, that [siblings] will be a half match.”
Hundreds of Canadians each year need a stem cell transplant, but ethnically diverse groups are largely underrepresented in Canada’s stem cell donor registry.
Black patients of all ethnic backgrounds have an estimated 16 to 19 per cent chance of finding a matched unrelated donor. Black donors make up less than three per cent of the Canadian stem cell registry.
In contrast, white patients of European descent have a 75 per cent chance of finding a matched unrelated donor. And about 68 per cent of donors on the Canadian stem cell registry are white.
Stem cells are capable of developing into other kinds of cells like muscle cells, blood cells, or nerve cells.
Blood stem cells are found in our bone marrow and essentially act as factories that produce different parts of our blood, such as red blood cells, white blood cells, and platelets. These stem cells give rise to the blood found in our bloodstream.
Stem cell transplantation is a treatment for over 80 diseases and disorders. Commonly leukemia, lymphoma, multiple myeloma, and other bone marrow deficiency diseases are treated with stem cell donations.
“If somebody’s requiring a stem cell transplant, patients are much more likely to find a match with a donor who shares the same ancestral background,” says Dr. Heidi Elmoazzen, director of stem cells at Canadian Blood Services.
Only about 25 per cent of people are fortunate enough to find a match within their own family, she says
When somebody is identified as needing a stem cell transplant, the patient’s family is asked and checked for a match first.
“However, if somebody doesn’t have a match within their own family, then they’re reliant on an unrelated stem cell donor, and then they come to Canadian Blood Services,” Elmoazzen says.
When CBS looks for a match, they check DNA markers called human leukocyte antigen markers, or HLA. These are protein markers that are found on the surface of white blood cells and are inherited from our parents.
“The best potential HLA matches are from a sibling, but only 25 per cent of people will have a sibling match,” Elmoazzen says.
“Any two siblings will have a one in four chance of matching to each other completely. And then one in two per cent chance, or a 50 per cent chance, that they’ll be a half match, and then a one in four per cent chance that they won’t be a match at all,” says Dr. Warren Fingrut, founder and director of the national Stem Cell Club in Canada.
“The rest are reliant on these unrelated donors. The closer the match between a patient and donor, the better the outcome for the patient,” Elmoazzen says.
People are more likely to find an unrelated donor that matches them from within their own ancestral group, Dr. Fingrut says.
Although the Canadian stem cell registry has about 450,000 potential donors, Elmoazzen says only about half of them follow through with their donation when they’re called. This can have serious risks to a patient who is waiting for a transplant.
“Let’s say I’ve identified you as my donor, and you back out at the last minute. Now we have to go back to the drawing board trying to find another donor. And this sometimes adds time that a patient might not have,” she says.
She says it’s important registrants understand that joining the registry is a long-term commitment because that call to donate might come months or years after registration.
Dr. Fingrut notes that many factors may contribute to the underrepresentation of specific ethnic and racial groups as donors.
“These include knowledge gaps, cultural and socioeconomic barriers, and, for some ethnic or racial groups, a mistrust of the healthcare system based on how those groups have been treated.”
CBS has access to a global registry made up of approximately 38 million people, but Elmoazzen says patients with diverse ethnic backgrounds still have a harder time finding a stem cell match. The pandemic has also affected access to the global registry.
“Most of our Canadian patients are reliant on an international stem cell donor, but with borders being closed, travel-related testing and other restrictions, and donor health concerns related to COVID-19, this has meant that patients and transplant centres are now more reliant on donors here in Canada.”
Over the course of the COVID-19 pandemic, stem cell recruitment has dropped by 70 per cent. Elmoazzen says that number threatens the health of hundreds of patients across the country who are waiting for a match.
“The first step of a long journey to becoming a donor … is becoming familiar and interested in why it’s relevant to you. Learn more and take the plunge and educate [yourself] on the process and hopefully decide to become a donor,” Dr. Fingrut says.
The Stem Cell Club is a donor recruitment organization that works in collaboration with CBS to address racial disparity among stem cell donations.
As an undergrad from McMaster University, Dr. Fingrut was involved in running some bone marrow drives, or stemcell drives, with his fraternity. They had broken the Guinness Book of World records for the largest 24-hour bone marrow drive, with most registered donors signing up in a day. Although that record has since been broken, it got him involved in the drives.
When he moved to Vancouver to start medical school at the University of British Columbia, he noticed no group or club existed that ran drives regularly.
“There should be a group of students doing this regularly, so I formed a stem cell club and it was a very successful model,” Dr. Fingrut says.
Some of his friends at UBC’s medical school in the Okanagan, Prince George, and Victoria helped create chapters at those locations when he was a medical student. When Dr. Fingrut started as a resident in internal medicine in Toronto, he began launching chapters at campuses across Ontario.
“In the years that followed, I rolled out chapters across Canada,” Dr. Fingrut says.
But he didn’t know he would be starting a national organization that now oversees stem cell clubs at 27 different universities across the country.
Before the pandemic, they ran stem cell drives to register Canadians as potential donors throughout the year. But they moved their recruitment efforts online.
The club created a TikTok library to share information about stem cells, donation processes and promote specific campaigns for patients.
“I thought promoting stem cell donation through TikTok was one of the ways to take advantage of the power of social media, and that’s how we started the library of TikToks to recruit stem cell donors,” says Brady Park, who leads the library of TikToks to support stem cell donor recruitment and studies medical science at Western University.
“We talk about the principles of donation, and we talk about the need for ethnically diverse donors,” Park says.
Park says he became passionate about it during his first year at university. At the club fair, he saw a stem cell club booth recruiting university students and thought that was useful.
“[It was] a really useful way for university students to contribute to something important. This is not just some volunteer experience I have for school. This is important. And this is very meaningful for anybody. So that’s what kept me going.”
Gabriele Jagelaviciute, lead of the Why We Swab campaign and first-year medical student at Queen’s University, got involved in stem cell donation in high school.
“There was a stem cell drive in my high school for a young boy … who needed a stem cell transplant for a blood cancer. When I came to Western for my undergrad, I learned about the stem cell club there, and I just had to join and help out this cause.”
The Why We Swab initiative is a library of stories of people impacted by stem cell donations. The library includes stories from patients, donors, caregivers, and transplant staff.
“Storytelling is a really, really powerful tool to share information … really allows readers to connect to the emotions that the storyteller is portraying and understand their story on a more emotional plane,” she says. “It humanizes the whole thing and helps people understand it’s not as scary as it might seem.”
In February, for Black History month, the club hosted the “Black Donors Save Lives” campaign to raise awareness of the need for donors with diverse ethnic backgrounds.
“The whole goal is to educate eligible donors to raise awareness and help recruit more donors to sign up with the stem cell registry,” Jagelaviciute adds.
There are three ways to donate stem cells.
Peripheral blood stem cell donation is just like a blood donation and makes up about 90 per cent of stem cell donations.
“We give you a medication just to force the stem cells out of your bone marrow into your bloodstream, and they circulate in your bloodstream. Then we collect it. It’s very similar to a blood donation, where we hook you up to an apheresis machine for about four to six hours, and the stem cells are collected that way,” Elmoazzen says.
Donations are also accepted through umbilical cord blood. The umbilical cord usually gets discarded as medical waste after the baby’s delivery, but it carries the same stem cells that adult donors give.
Bone marrow stem cell donation is rarely needed, but when it is, it requires a surgical procedure performed under general anesthesia.
People can register between ages 17 and 35, but they remain a donor into their 60s. And Dr. Fingrut says there is a particular need for men to donate.
“The majority of people who are signed up as donors right now are women, but the majority of donors that transplant physicians are picking for their patients are men because, I think, that leads to better outcomes for their patients.”
Currently, for Pride Month, the club is running a “Saving Lives with Pride” campaign in collaboration with gay, bisexual, and queer men across Canada to engage their communities as potential stem cell donors.
While gay, bisexual men, and transgender women still have to be celibate for three months prior to donating blood, the requirement is not the same for stem cell donation.
“For stem cell donation, there is no deferral period based on recent sexual contact between two men. It’s not a restriction,” Dr. Fingrut says.
“So this campaign is reaching out in collaboration with bi, gay, and queer men to let them know about this and raise [awareness] about donation.”
There is no stem cell club currently at Kwantlen Polytechnic University, and Dr. Fingrut says “it would be a pleasure” to connect with students interested in running drives and campaigning online.
He says if anyone at KPU is interested in forming a stem cell club, he can be reached at firstname.lastname@example.org to get started.
“It’s exceptionally meaningful,” he says, “Because you have the opportunity to save a life that no one else could.”