Black Donors Save Lives
Black History Month – February 2021
Black stem cell donors are needed.
Black people make up less than 3% of the Canadian stem cell donor registry. Genetic markers play a large role in determining stem cell compatibility. This means that a lot of black patients waiting for a stem cell donation do not find a match. Black patients who need a stem cell transplant are less than half as likely as Caucasian patients to find a matched unrelated donor. At any one time, there are dozens of Black patients in Canada who are searching for a matched donor for a stem cell transplant, and many cannot find one anywhere in the world.
You could make a brighter day…today a Black life needs youAdeoluwa
Black patients face racial disparity.
Black patients are much less likely than White patients to find a fully matched unrelated stem cell donor, a match that could save their lives. Only 16-19% of Black patients in need have a matched unrelated donor, compared to 75% of White patients. More Black donors are needed to help close this gap.
Did You Know…
- Black people make up <3% of donors listed on Canada’s stem cell donor registry
- Black patients who need a stem cell transplant are less than half as likely as Caucasian patients to find a matched unrelated donor
Ethnic diversity makes a difference
Dorothy Vernon-Brown is a Jamaican-Canadian who was first diagnosed in 2013 with Acute Myeloid Leukemia after her summer trip to the Caribbean.
Many patients with leukemia and other blood diseases need a stem cell transplantation as part of their treatment. Dorothy’s search for a stem cell donor began after her diagnosis.
Continue reading to learn more about Dorothy’s story, published as part of the Why We Swab initiative. To read more stories, visit Why We Swab on the social media pages linked below.
Part 1: “In less than three days…everything changed”
“About 7 years ago, there was an unexplained huge bruise on my left thigh. I went to a walk-in clinic to get it checked out. Some blood work was done and after that, I went on my way, business as usual, until late afternoon when I got a call from the walk-in clinic
. I initially didn’t think anything of the call or the need for them to see me again. I went back to the clinic and [the doctor] asked me, ‘do you have any family here with you’. The next words I heard were: ‘I think you have leukemia’. I was shocked and my heart dropped, it was hard to believe because prior to that day, I had no health issues at all, absolutely no underlying health issues, in fact I had just braved the CN Tower EdgeWalk hands free with some colleagues.The doctor then told me I needed to get to the hospital as soon as possible. In less than three days of having that bruise on my thigh, I was diagnosed with leukemia. Everything changed.”
Part 2: It was good until it wasn’t: “I think it’s back”
“I went through my first chemotherapy treatment and from that point on, I literally began the fight for my life. The treatments seemed to be working for me and my energy was getting back to normal. But this feeling was really short-lived, as 10 months later, during my routine check-up, the doctor said to me ‘I think it’s back’. At this point, I was given my options, one of which included a stem cell transplantation. After a lot of thought and weighing all options carefully, I decided to go with the stem cell transplantation route because I thought it was going to give me a better chance of long term survival.”
Patients in need of a stem cell transplant are more likely to find a matched unrelated donor from within their own ethnic group. Black people make up 1.55% of donors listed on Canada’s stem cell donor registry, and Black patients who need a stem cell transplant are less than half as likely as Caucasian patients to find a matched unrelated donor. At any one time, there are dozens of Black patients in Canada who are searching for a matched donor for a stem cell transplant, and many cannot find one anywhere in the world. We urge healthy individuals to reach out to their local registry to become a stem cell donor.
Part 3: The Search: “Needle in a haystack”
“I didn’t find a compatible donor in the registry because there are so few Black people on the registry. If you do the math, the chances were obviously so slim and not in my favour. So, I started playing the numbers game to find people in my ethnic group who were a possible match, not just for me but for other patients who had a similar need; and not just for then but for the future. To increase those odds I realized we needed to influence those low numbers and get more ethnically diverse people on the registry. My personal appeal is a broader appeal to my community; not only the Jamaican/Caribbean but all Blacks because of what the numbers look like. And the more optimal donors we have (men between the ages of 17-35), the greater the chance that patients who look like me can find their one match.”
After recognizing that the odds were not in her favor, Dorothy started a non-profit that aimed to raise awareness about the need for Black stem cell donors. Black people make up 1.55% of donors listed on Canada’s stem cell donor registry, and Black patients who need a stem cell transplant are less than half as likely as Caucasian patients to find a matched unrelated donor. At any one time, there are dozens of Black patients in Canada who are searching for a matched donor for a stem cell transplant, and many cannot find one anywhere in the world.
Part 4: A glimpse of light: “Half-match donor”
“Unfortunately, I didn’t have any luck finding a fully compatible donor in the registry or within my family. At this point, I was hoping that the leukemia would stay in remission while I wait for a donor. Luckily my sister was found to be a half-match and with the expert transplant team at Juravinski Hospital in Hamilton, on March 27, 2015 I had the stem cell transplant.
It’s been 5 years since a successful transplant and I am back to great health and an excellent quality of life”
Black patients face an uphill battle trying to find a matched donor for a stem cell transplant, and many, like Dorothy, cannot find one anywhere in the world. A perfectly matched donor increases a patient’s chance of success with the transplant.
Part 5: Looking forward: “A gift that is in your hands”
“Stem cell transplantation is a miracle for patients and I wish people knew how easy it is to be a stem cell donor. Everyone needs to do their part and help someone else in need. If you are between the ages of 17-35, please do your part and help someone today. You could give someone an opportunity like my sister gave me, to be around and live the life I want. People want to live, so if that gift is in your hands, I appeal to you to see it as something significant to do in your life.”
Part 6: Life post-transplant
“It has been 5 years post-transplantation and I have been doing really well. I still have to be very careful and conscious about my health as I cannot afford to allow anything to impede my quality of life. And now, with the whole pandemic, I have to stick to air tight regulations to avoid contracting the virus.
Other than that, I am happy, I am well, and I still advocate for the need of black stem cell donors in the database.”
Dorothy still works as a marketing specialist and she is still heavily involved in her non-profit, Donor Drive 4 Dorothy (https://www.donordrive4dorothy.org/). She continues to organize stem cell drives to raise awareness and educate her community for the need of more blacks in the stem cell registry.
What is stem cell donation?
Watch this whiteboard video to learn more about blood stem cell donation, how it helps patients in need, how the matching process works, and what donation looks like.
How are Stem Cells Donated?
There are two ways in which stem cells can be donated:
- Blood—90% of the time stem cells are obtained from a simple procedure that is similar to giving blood. A growth factor is used to increase stem cell count in blood, which is then collected in a procedure taking around 4-6 hours.
- Bone marrow—stem cell donation from bone marrow is necessary less than 10% of the time. The procedure is performed under anesthesia and donors who have undergone bone marrow donation report the feeling post-donation to be similar to falling on ice.
If matched with a patient, a physician will decide which method is best suited under the circumstances at hand. See the images below for details on how each procedure is performed.
Register to be a stem cell donor today at http://blood.ca/black-donors-save-lives
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