December 28, 2008
The third day of Kwanzaa celebrates collective work and responsibility. Some members of the black community call each other "brother" and "sister". We need to reassert this effort to create the notion that what happens to one person affects all of us. The fact of the matter is that the most likely match for a bone marrow donor is a patient of the same or similar ethnicity. If patients of African descent are going to find unrelated donors, then people with a similar genetic story need to make themselves available. Right now, 50-60% of Africans in the United States can find an unrelated donor. In Canada and the UK, this number is around 20%. While there are many allies in communities of all ethnic backgrounds, if people of African descent do not register as donors, these same people do not find donors. It's that easy.
Emru had leukemia, but a host of other diseases were treated with this therapy. When I found out that severe cases of sickle cell anemia in minors is one of the diseases treated, realizing that these patients are 95% of African descent, I understood people really need to band together.
Also, when Emru first found out he needed an unrelated donor, at the beginning many people who did not know me well said this only matters because a relative or close friend is sick. I beg to differ. It only appears on people's radar when someone gets sick, because information about donation doesn't get out fast enough. I have a huge admiration for people who didn't even know Emru's name, who immediately asked, "What can I do"? When I thanked one woman for taking the time to speak with me on the telephone, she merely said, "Of course! We are all family".
Different communities gathered to help as many people as possible, one person at a time. Each new person created a support network with much more outreach potential than everyone separately. Each person has their role to play: A person can get informed, tell others, and, if eligible get registered.
Since I was trying to release information, I felt it was my responsibility to make sure that my information was as accurate as possible. I owed it not just to my brother, but the other people affected by this issue. As I began to separate fact from fiction, and also get a grasp of the dearth of donors for patients waiting for unrelated donors, especially in severely underrepresented groups, I got into action, and asked anyone who would help to join me.
In some cases, I was the one joining them. There are 500 to 600 active requests for unrelated donors in Canada on any given day, 10 times that amount in the US, and more worldwide. In this group, there were patients, friends, families, and good samaritans who realized they could do something to help, and took it upon themselves to do something.
Beverley De-Gale and Orin Lewis formed the African Carribbean Leukaemia Trust and raised the number of African, Caribbean and multiethnic donors in the UK from 550 to 25000 over the last decade.
This was occurring in other communities. Michelle Maykin and Van Le spearheaded Project Michelle and helped increase the registry by over 15 000 people this year, many of Asian descent. The Save Carolyn campaign is largely responsible for 25% of all new registrants in Canada this year being Chinese.
Pat Pedraja made it possible for over 10 000 US residents to get registered over two of his summer vacations. He is in his early teens was named a 2007 CNN Hero and is also organizing to combat the shortage of minorities in the registry. He is being treating over 3.5 years for leukemia but does not need a transplant himself.
(These remarkable numbers are still not enough in both cases.)
Since then other people who begin this type of quest have joined the ranks and now it is my responsibility to keep up my end of the work and and show others the ropes.