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For a leukemia patient hoping to find a stem cell match from a stranger, finding that match can be like winning the lottery.
But the same is also true of the donor who gets a phone call that they have something desperately needed by another person somewhere in a wide, wide world.
In 2016, a woman with leukemia was infused with stem cells from a man at The Ottawa Hospital. The pair had been matched through a network of donor registries that spans the globe. The recipient and donor knew nothing about each other, not even the country where the other lived.
On Wednesday, recipient Amanda Adams, a 40-year-old librarian from North Bay, and donor Chris Read, a 55-year-old senior project manger from Franklin, New Hampshire, met each other for the first time in New York City.
When Read donated his stem cells, the only thing he knew about Adams was her age and gender. He learned in December 2016 that the donation was successful.
“I lost it. I couldn’t even speak,” he said this week. “It was a great feeling.”
Read and his wife, Amy, signed up to be on the Florida-based public donor registry Gift of Life after they visited an information booth at a camper show in 2012 and gave a cheek swab.
Read has a son, now 24, who was diagnosed with diabetes at the age of three and feels strongly about donation. “Someday, he’s going to need a kidney. There’s an extension of life for people like him. It just seemed like the right thing to do.”
In Canada, there’s one chance in 500 that a person in a registry will be contacted about a potential match. Some matches are made more than 20 years after a donor joins a registry.
Read got that call in March 2016. He flew to Fairfax, Virginia, for a medical exam and further blood tests to qualify and later received injections to stimulate the production of stem cells.
He compares donating stem cells to “giving blood with both arms.” Blood was drawn through a needle, the stem cells were separated in a machine and the remaining blood components were returned through a needle in his other arm. It took about three hours.
“Literally, I’m a part of her,” said Read, who started corresponding with Adams after they both gave contact permission. “That’s why this has been so emotional.”
Adams was diagnosed with chronic lymphocytic leukemia in 2010. She underwent chemotherapy and eventually returned to work, but relapsed in March 2016. A stem cell transplant “was the only real way of being cured,” she said.
Chris Read says the only thing he knew about Amanda Adams when he donated his stem cells was her age and gender. Credit: Andrew Tess
Typically, family members are asked first if they are willing to donate because they are often the closest possible genetic match. But none of Adams’s three younger sisters matched. The transplant team had to look farther afield.
Fewer than a quarter of patients who need stem cell transplants are able to find a match in their own families. And almost 90 per cent of Canadian patients who received stem cells from unrelated donors in the past year were matched from donors in other countries. Other registries that are a part of the network also have access to searching the OneMatch database with Canadian Blood Services.
The international system has become very smooth, says Sheryl McDiarmid, an advanced practice nurse with the bone marrow transplant team at The Ottawa Hospital, where between 70 and 100 related and unrelated transplants happen every year.
Matches — and sometimes multiple matches — may pop up within seconds from databases as far away as Singapore, Israel and Australia. Or there may be no matches at all, said McDiarmid.
The match is just the first step. The donor is contacted and asked if they are still interested. Taking all the necessary tests may take time. Donors give in their home country, and a Canadian courier brings the donation back. The recipient is usually given high doses of radiation or chemotherapy to destroy the diseased bone marrow the prepare for the transplant. The patient is very vulnerable at this point and won’t survive without the donated stem cells.
“It’s a long haul. The patient has no functioning bone marrow for three weeks,” said McDiarmid.
Dena Mercer, associate director of the OneMatch registry, says the optimum donor is a male, 17 to 35 years old. Men tend to yield a higher volume of stem cells and they do not have the antibodies women are exposed to in pregnancy.
OneMatch focuses much of its recruitment on colleges and universities. As it stands, Caucasians are over-represented in the registry, and OneMatch is reaching out to a more diverse set of potential donors, especially Indigenous, black and mixed-race donors.
“People need to understand that they re signing up to donate to anyone in the world,” said Mercer. “It could be a neighbour down the street, or someone half way across the world.”
Gift of Life Marrow Registry chief executive and founder Jay Feinberg said the registry is thrilled to be part of bringing Adams and Read together.
Feinberg was diagnosed with leukemia in 1991 at the age of 22, and was told a bone-marrow transplant was his only hope. But he was Jewish, a group that was under-represented on registries at the time. When a matching donor could not be found in his family, supporters widened the net to recruit more Ashkenazi Jews to register in North America, Israel and around the world. Even though 60,000 signed up, Feinberg had no exact match until one was found in Milwaukee in 1995.
“One remarkable person and one cheek swab can save a life, and we’re humbled to be a part of making that happen,” he said.
By the numbers:
75: Number of registries that are part of the global stem cell database (Some countries have multiple databases. Canada has two, one managed by Canadian Blood Services and another by Héma-Québec)
29 million: How many volunteer donors are on those databases and can be accessed by Canadian Blood Services
451: Total number of stem cell transplants in Canada in the past year using stem cells sourced from an unrelated donor
401: Total number sourced through an international data bank (this includes Quebec, which has a separate blood system)
89 per cent: Proportion of stem cell donations in Canada that come from international donors in this past year
1,389: The number of Canadian patients who are looking for an unrelated donor but have not been matched, as of May 31, 2018
427,000: Number of people who have signed up as potential donors on Canada’s OneMatch registry
How to register to be a stem cell donor:
1. Visit and read information for new registrants on blood.ca/stem-cells.
2. Complete the knowledge test of 10 true-or-false questions to ensure you have an understanding of stem cell donation
3. Create a personal profile on blood.ca and complete the health assessment questionnaire
4. Accept the notice to OneMatch registrants and click to consent to participate
5. Canadian Blood Services will send you a buccal swab kit to collect cell samples from your mouth. Follow the instructions and return the swab using the postage-paid envelope. The sample will be analyzed in a lab. You will be informed when you are part of the registry.
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But the same is also true of the donor who gets a phone call that they have something desperately needed by another person somewhere in a wide, wide world.
In 2016, a woman with leukemia was infused with stem cells from a man at The Ottawa Hospital. The pair had been matched through a network of donor registries that spans the globe. The recipient and donor knew nothing about each other, not even the country where the other lived.
On Wednesday, recipient Amanda Adams, a 40-year-old librarian from North Bay, and donor Chris Read, a 55-year-old senior project manger from Franklin, New Hampshire, met each other for the first time in New York City.
When Read donated his stem cells, the only thing he knew about Adams was her age and gender. He learned in December 2016 that the donation was successful.
“I lost it. I couldn’t even speak,” he said this week. “It was a great feeling.”
Read and his wife, Amy, signed up to be on the Florida-based public donor registry Gift of Life after they visited an information booth at a camper show in 2012 and gave a cheek swab.
Read has a son, now 24, who was diagnosed with diabetes at the age of three and feels strongly about donation. “Someday, he’s going to need a kidney. There’s an extension of life for people like him. It just seemed like the right thing to do.”
In Canada, there’s one chance in 500 that a person in a registry will be contacted about a potential match. Some matches are made more than 20 years after a donor joins a registry.
Read got that call in March 2016. He flew to Fairfax, Virginia, for a medical exam and further blood tests to qualify and later received injections to stimulate the production of stem cells.
He compares donating stem cells to “giving blood with both arms.” Blood was drawn through a needle, the stem cells were separated in a machine and the remaining blood components were returned through a needle in his other arm. It took about three hours.
“Literally, I’m a part of her,” said Read, who started corresponding with Adams after they both gave contact permission. “That’s why this has been so emotional.”
Adams was diagnosed with chronic lymphocytic leukemia in 2010. She underwent chemotherapy and eventually returned to work, but relapsed in March 2016. A stem cell transplant “was the only real way of being cured,” she said.
Chris Read says the only thing he knew about Amanda Adams when he donated his stem cells was her age and gender. Credit: Andrew Tess
Typically, family members are asked first if they are willing to donate because they are often the closest possible genetic match. But none of Adams’s three younger sisters matched. The transplant team had to look farther afield.
Fewer than a quarter of patients who need stem cell transplants are able to find a match in their own families. And almost 90 per cent of Canadian patients who received stem cells from unrelated donors in the past year were matched from donors in other countries. Other registries that are a part of the network also have access to searching the OneMatch database with Canadian Blood Services.
The international system has become very smooth, says Sheryl McDiarmid, an advanced practice nurse with the bone marrow transplant team at The Ottawa Hospital, where between 70 and 100 related and unrelated transplants happen every year.
Matches — and sometimes multiple matches — may pop up within seconds from databases as far away as Singapore, Israel and Australia. Or there may be no matches at all, said McDiarmid.
The match is just the first step. The donor is contacted and asked if they are still interested. Taking all the necessary tests may take time. Donors give in their home country, and a Canadian courier brings the donation back. The recipient is usually given high doses of radiation or chemotherapy to destroy the diseased bone marrow the prepare for the transplant. The patient is very vulnerable at this point and won’t survive without the donated stem cells.
“It’s a long haul. The patient has no functioning bone marrow for three weeks,” said McDiarmid.
Dena Mercer, associate director of the OneMatch registry, says the optimum donor is a male, 17 to 35 years old. Men tend to yield a higher volume of stem cells and they do not have the antibodies women are exposed to in pregnancy.
OneMatch focuses much of its recruitment on colleges and universities. As it stands, Caucasians are over-represented in the registry, and OneMatch is reaching out to a more diverse set of potential donors, especially Indigenous, black and mixed-race donors.
“People need to understand that they re signing up to donate to anyone in the world,” said Mercer. “It could be a neighbour down the street, or someone half way across the world.”
Gift of Life Marrow Registry chief executive and founder Jay Feinberg said the registry is thrilled to be part of bringing Adams and Read together.
Feinberg was diagnosed with leukemia in 1991 at the age of 22, and was told a bone-marrow transplant was his only hope. But he was Jewish, a group that was under-represented on registries at the time. When a matching donor could not be found in his family, supporters widened the net to recruit more Ashkenazi Jews to register in North America, Israel and around the world. Even though 60,000 signed up, Feinberg had no exact match until one was found in Milwaukee in 1995.
“One remarkable person and one cheek swab can save a life, and we’re humbled to be a part of making that happen,” he said.
By the numbers:
75: Number of registries that are part of the global stem cell database (Some countries have multiple databases. Canada has two, one managed by Canadian Blood Services and another by Héma-Québec)
29 million: How many volunteer donors are on those databases and can be accessed by Canadian Blood Services
451: Total number of stem cell transplants in Canada in the past year using stem cells sourced from an unrelated donor
401: Total number sourced through an international data bank (this includes Quebec, which has a separate blood system)
89 per cent: Proportion of stem cell donations in Canada that come from international donors in this past year
1,389: The number of Canadian patients who are looking for an unrelated donor but have not been matched, as of May 31, 2018
427,000: Number of people who have signed up as potential donors on Canada’s OneMatch registry
How to register to be a stem cell donor:
1. Visit and read information for new registrants on blood.ca/stem-cells.
2. Complete the knowledge test of 10 true-or-false questions to ensure you have an understanding of stem cell donation
3. Create a personal profile on blood.ca and complete the health assessment questionnaire
4. Accept the notice to OneMatch registrants and click to consent to participate
5. Canadian Blood Services will send you a buccal swab kit to collect cell samples from your mouth. Follow the instructions and return the swab using the postage-paid envelope. The sample will be analyzed in a lab. You will be informed when you are part of the registry.
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