Thunder Bay

More needs to be done to attract Indigenous stem cell donors, northwestern Ontario cancer survivor says

Bess Legarde was diagnosed with acute myeloid leukemia in 2017. She says she'd never heard of stem cell donation prior to getting sick - even though she was within the 17-35 age group that qualifies to donate.

Bess Legarde was diagnosed with acute myeloid leukemia in 2017

Bess Legarde said she didn't know much about stem cell donation prior to being diagnosed with leukemia, even though she was within the 17-35 age group that qualifies to donate. (Heather Kitching/CBC)

A cancer survivor from Fort William First Nation near Thunder Bay, Ont., says Canadian Blood Services needs to do more to reach out to potential Indigenous stem cell donors.

"I feel like they could probably do a little bit more footwork in actually physically going to communities and possibly getting people swabbed there," Bess Legarde told CBC, referring to the process of gathering sample cells from would-be donors using cheek swabs.

Legarde was diagnosed with acute myeloid leukemia in 2017 at the age of 29. 

A recent study from Montreal's McGill University Health Centre found striking levels of the cancer in industrial cities in Ontario, including Thunder Bay.

Legarde received chemotherapy but initially refused a stem cell transplant because her would-be donor was only a nine-out-of-10 match, and a failed transplant would have been fatal.  

Patients need a donor who is almost a genetic twin

However, the cancer returned a year later, and she underwent a successful transplant in Ottawa.

Stem cell transplants can be life-saving for people battling blood cancers, but patients need a donor who is a virtual genetic twin, explained Sharr Cairns, territory manager with the Canadian Blood Services stem cell registry. They are most likely to find a matching donor within their own ethnic group.  

But the organization says it needs help to diversify its donor registry, and it particularly needs more Indigenous donors. 

"We have patients from different diverse cultures who are in need of stem cell transplants, and what we need to make sure of is that there is a donor there for them should they need a stem cell transplant," Cairns said.   

Legarde wants to see the organization doing more to get the word out.

"Growing up in my community forever — and I'm right next door to the city — [I] never heard anything about stem cells," she said.  "I've heard about blood donation, but we don't have that in the city anymore."  

Friends found the registration process a hassle

At 29, Legarde is within the 17-35 age group from which potential stem cell donors are drawn, but she said some of her friends resisted signing up because they found the process a hassle. 

"Right now, they only offer it as you register online, you get the swab kit mailed to you, and then you have to mail it back, so I feel it's deterring people from actually doing the process because they're like, 'aw, it takes so long,' you know?"  

Family members imagined that the donation process was much more invasive than it actually is, she added.

Legarde would like to see Canadian Blood Services educating young people in schools about stem cell donation and visiting Indigenous communities to sign up potential donors in person, she said.

Asked if Canadian Blood Services might bring blood donor clinics back to northwestern Ontario as a means of building relationships with potential stem cell donors, Cairns said that the agency makes decisions about clinic locations based on "staffing, logistics, hospital demand and cost efficiency."

Canadian Blood Services does not currently have swab kits available in the Ojibway language, Cairns added.