On the stem cell registry? Let us know you’re truly prepared to donate
Many potential donors decline to proceed with lifesaving donation when asked
November 17, 2020
Colleen LeCours (left) received a transplant of stem cells from Timothy White (right) in 2016. Timothy was honouring the commitment he made when he joined the stem cell registry. (Photo taken in Feb. 2020).
Canadian Blood Services is calling on would-be stem cell donors to re-affirm their commitment to patients.
Every year, hundreds of Canadian patients require a lifesaving stem cell transplant to treat more than 80 blood cancers and disorders. Three quarters of those patients will not find a match within their own families. To survive, they’ll turn instead to Canadian Blood Services Stem Cell Registry, which recruits healthy volunteer donors.
However, not all those who join the registry agree to donate when called.
“Currently, when potential donors on the 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 (WMDA) 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, because a call to donate could come many years down the road. And if it does, the patient may need help quickly. The treatment keeping them alive as they wait for transplant may cause them to be immuno-compromised and susceptible to many other health problems. If one matching donor declines, a delay finding another — if one can even be identified — can put the patient at serious risk.
Dr. Heidi Elmoazzen is the director of stem cells at Canadian Blood Services.
Help us find you, so you can help a patient
In addition to those who decline to donate when contacted, Canadian Blood Services frequently struggles to reach people on the registry because their contact information has changed.
“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.
“If for any reason a person in our registry changes their phone number, home address or email, or if their health status changes, we would like them to let us know about these changes so that we can update their information,” she adds. You can update your contact information anytime by calling 1 888 236 6283 (1 888 2 DONATE).
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Canadian Blood Services strives to help every patient, match every need and serve every Canadian. And because donor availability directly affects patients who are waiting for stem cell transplants, ensuring that we have an adult stem cell registry of highly committed donors is a priority. That’s why if you’ve joined the registry, you can expect to hear from us in the weeks ahead. We’ll ask you to choose “yes, committed” if you would like to remain in the registry, or if you wish to have your status changed to “no longer available” for any reason. You can update that status anytime by calling 1 888 2 DONATE.
“We also plan to send updates on our stem cell program, including stories about patients that illustrate the need for committed donors,” says Dr. Elmoazzen.
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The need goes on during the pandemic
Committed registrants are more important than ever during the COVID-19 pandemic.
Most Canadian patients are helped by international stem cell donors, who are identified through Canadian Blood Services’ connections with registries around the world. However, international border closures and travel restrictions related to COVID-19 have created some challenges for transplantation, which means patients and transplant centres are now relying more on donors from Canada.
The pandemic has also made it more difficult to recruit new potential donors to the registry. With group swabbing events cancelled, we are encouraging people to join the registry by signing up online to receive a swab kit in the mail.
“We’re especially interested in male donors between the ages of 17 and 35, because cells from those donors tend to result in better outcomes for patients,” says Dr. Elmoazzen. “Also, because of Canada’s changing demographics, we need donors from all ancestral backgrounds to provide matches for patients.”
We urge healthy Canadians between 17 and 35 years of age to join Canadian Blood Services Stem Cell Registry online and 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 can have their status updated 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).