Too many prospective stem cell donors decline to help patients when asked

Joining the registry is a long-term commitment

November 24, 2020 (OTTAWA) – Canadian Blood Services is asking prospective stem cell donors to re-affirm their commitment to patients.

“Currently, when potential donors on Canadian Blood Services Stem Cell Registry are contacted to donate stem cells for a patient, only about 50 per cent of them follow through,” says Dr. Heidi Elmoazzen, director of stem cells at Canadian Blood Services. This is well-short of the World Marrow Donor Association’s recommended target of 80 per cent donor availability for member registries.

Most eligible Canadians who join the registry are passionate about helping a patient when they join, says Dr. Elmoazzen. In some cases, the decision not to donate when called is driven by important health or other personal reasons. However, prospective donors should understand that joining the registry is a long-term commitment. They could wait years for a call to actually help a patient. But when that call comes, the need is typically urgent. Any delay, such as one caused by a need to seek an alternative donor — if one can even be identified — can put a patient at risk.

Toronto’s 29-year-old Jamaique Rose is one of the patients urgently awaiting a stem cell transplant. Jamaique was first diagnosed with acute myelogenous leukemia (AML) in 2016, six months after giving birth to her youngest child. Her family has launched an urgent plea for potential donors to come forward.

“I had multiple rounds of treatment and fought hard,” says Jamaique, a single mom of three young girls. “In August 2020, this terrible disease came back, and I’m once again fighting for my life.”

Jamaique is one of hundreds of Canadian patients who require lifesaving stem cell transplants each year, as a treatment for more than 80 blood cancers and disorders. About 75 per cent of those patients will not find a matching donor within their own families. To survive, they rely on Canadian Blood Services Stem Cell Registry, with its database of healthy volunteer donors and its connections with similar registries around the world.

For this reason, Canadian Blood Services has launched an initiative to contact all individuals currently on the stem cell registry. In the weeks ahead, registrants will receive emails asking them to choose “yes, committed” if they are still committed to donating stem cells to any patient, or “no longer committed” if they are no longer committed to remaining on the registry. Registrants can also call 1 888 236 6283 (1 888 2 DONATE) to update their status. This change is not permanent. At any time, registrants can change their status to “yes, committed.”

Registrants should also call 1 888 236 6283 (1 888 2 DONATE) to update their contact information if it has changed since they joined the registry.

“Being able to reach a potential donor is essential to the timeliness of the donation process for a patient in critical need of a stem cell transplant,” says Dr. Elmoazzen.

Honouring the commitment

Robbie Faraday is one donor who honoured his commitment to patients.

After hearing the story of a fellow Queen’s University student who survived cancer because of a stem cell transplant, he joined the registry. The following year, he was sitting in class when his phone rang. Canadian Blood Services had news: Robbie had been identified as a possible match for a patient.

“I didn’t have any hesitation because I felt that it could have a huge impact on someone’s life,” says Robbie, who graduated last spring and now lives in Toronto. “Donating was a really positive and easy experience for me. I figured my discomfort was negligible compared to the positive impact my donation would have on the recipient’s life.”

Committed registrants are more important than ever during the COVID-19 pandemic. Most Canadian patients depend on international stem cell donors, but international border closures and travel restrictions related to COVID-19 have meant that patients and transplant centres now rely more on donors from Canada.

The pandemic has also made it more difficult to recruit new potential donors to the registry. To reduce the transmission of COVID-19, in-person community swabbing events to recruit potential donors are suspended. People can sign up online instead, and receive a swab kit in the mail.

Like Robbie, every committed registrant brings hope to the hundreds of patients in Canada and abroad who are waiting for their lifesaving stem cell donor match.

“We’re especially interested in male donors between the ages of 17 and 35, who tend to result in better outcomes for patients,” says Dr. Elmoazzen. “Also because of Canada’s changing demographics we’re looking for donors from all ancestral backgrounds.”

We urge healthy Canadians who are eligible to join Canadian Blood Services Stem Cell Registry online to order their swab kit to be delivered in the mail. Current registrants who no longer wish to be considered as a potential stem cell donor should contact us to update their status to “no longer committed” in the registry. This change is not permanent. At any time, registrants can change their status to “yes, committed,” or update their contact information, by calling 1 888 236 6283 (1 888 2 DONATE).

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