WHO WE ARE
Finding the Right One
Community Involvement Key for Successful Matching
Finding the One
Here at OneMatch, we often tell our donors, “you can be the one match to save a life.” This could not be truer for Anthony Codrington, who had only one stem cell matching donor in the entire world to save his.
Trading in the tropical coast of Barbados for Nova Scotia’s Annapolis Valley, Ricky – as friends call him – was starting to build a life with his wife when all was put on hold by his leukemia diagnosis. He was told his only hope for survival was to find a matching stem cell donor. Unfortunately for Ricky, not all stem cell donors are alike, and matching ethnically-diverse donors to ethnically-diverse patients is even more challenging because of specific genetic characteristics. For this reason patients are most likely to find their donor from within their own ethnic group. Even more challenging is matching Black patients to Black donors as they represent one of the smallest registrant groups - only 0.7% - of all potential stem cell donors on the OneMatch Stem Cell and Marrow Network.
During the search for his donor, Ricky would depend on numerous blood donations to maintain his health. But even accepting blood donations was hard, as people from different ethnic groups have increased complexities when matching blood types.
Dr. Isaac Odame, Medical Director of the Global Sickle Cell Disease Network at SickKids Hospital in Toronto, is all too familiar with the difficulties of matching patients within different diverse communities. “Individuals with African heritage possess certain minor blood groups that may make it difficult to find compatible blood when repeated transfusions are needed.”
Facing this dire combination of blood and stem cell needs, Ricky’s health, his life, the impact on his family were now in the hands of the Black community in Canada in hopes of receiving his match.
The Power of Many
For the OneMatch team there is no greater reason to continue building strong relationships with Black community organizations across the country, than being able to deliver good news to patients. This past summer, OneMatch had the honour of participating in World Sickle Cell Day awareness and donor registration events to bring more hope to Sickle Cell patients. Sickle Cell Disease is an inherited disease of red blood cells, predominantly affecting people of African descent, with a stem cell transplant being the only cure.
To continue our community support, OneMatch worked with the Sickle Cell Disease Association of Canada and the Health Association of African Canadians in Halifax on an awareness and registration event in June 2012. The two organizations are local leaders in health care for the African Canadian community, and their guidance has been imperative in OneMatch’s journey to building an optimal stem cell network.
In Toronto, our team worked with the TAIBU Community Health Centre and the Sickle Cell Association of Ontario on a similar initiative to raise awareness of the need, and register potential stem cell donors of Black heritage.
As Dr. Odame points out, “In stem cells, HLA (human leukocyte antigen) matching is compounded by the sheer lack of available ‘HLA-typed’ donors from African descent on the stem cell Network - OneMatch.” He stresses, “Quite simply, the more young male donors from these diverse backgrounds that are available for patients, the better the chance of finding the right match for both stem cell and regular patients. And that translates to a greater likelihood that the patient’s life can be significantly improved.”
Getting and Giving the Good News
Leadership, guidance and community relations are the key to delivering the good news that Ricky and his family finally received. Ricky had indeed found his match.
“When you are told that 75 per cent of patients will rely on matching an unrelated donor, you really understand the odds of survival,” says Ricky. “Being Black reduced even further the ability of finding my match then as it is now. I was one of the very fortunate few that found his match to continue living.”
Yet, Ricky’s journey was just beginning as he slipped into a coma for over a month and the health of his donor put Ricky’s chances of transplantation at risk.
Happily, Ricky rallied and his stem cell transplant was able to go ahead.
Now, four years later, Ricky states that he cannot live a day without thanking all the people responsible for his gift of renewed life through blood and stem cell donation.
The Way Forward
Ricky’s story is inspiring, as it highlights how communities, where ever they may be, need to come together to support one of their own. But there are also stories of current and future need that push our work forward.
Take seven-year-old Kynan who was diagnosed with Sickle Cell Disease when he was only four. We’ve mentioned that the only cure for his condition is a stem cell transplant, and although Kynan is not searching for a matching donor today, his situation may change at any time.
Kynan’s mother Winnell says she wants her son to have what any mother wants for their child – to lead a normal healthy life, to be active in sports and to do well in school. And it is only by raising awareness and building partnerships that we can fulfill the needs of future patients like Kynan.
Jennifer Philippe, OneMatch Director, confirms this commitment to awareness is the core strategy for the OneMatch team as they continue to take progressive steps towards engagement within not just the Black community, but within all of Canada’s ethnically-diverse communities.
“Education through awareness is key to our success. Once people know their future depends on their community taking part in the solution, they are eager to help,” says Philippe. “All it takes is a dedicated community champion who tells their community, ‘a simple cheek swab is all it takes to renew hopes for stem cell transplant patients and their families across Canada.’”
With the establishment of the national OneMatch Public Cord Blood Bank, African Canadian mothers will have the opportunity to build new history of their communities across the country. They will not only be bringing life to a new generation, but also the hope of renewed life through donating their babies’ cord blood.
OneMatch is continuing to work with our community partners on new ways to tell stories like those of Ricky and Kynan, and to register new potential donors to ensure that patients like them have more options when searching for their one match. The Swahili meaning of our partner TAIBU’s name – ‘to be in good health’ – is all OneMatch is striving towards for our patients. Together, we are working on improving the health outcomes of Black communities in Canada.
“Providing an optimal stem cell Network for all Canadians is our first priority and working with Diverse Canadian health care leaders is vital to having more options available for our patients. We need more happy endings to this story as Ricky’s,” says Philippe.