When I recovered from the shock of learning that my Mom had acute myeloid Leukemia, I set to work on learning more about it, and trying to find what part I could play.
It was evident early on that my Mom would need a bone marrow transplant to survive more than one or two years. AML is a vicious disease that can only be repressed by intense chemotherapy. It comes back, and the chemo treatments quickly lose potency. So I saw the part I would play, and knew it would be a lifetime endeavor.
With the help of Pat Conlee of the National Marrow Donor Program, I began to learn about the bone marrow registry. I worked with Conlee, my Father and friends and family to put together a bone marrow drive for my mother in Victorville, Calif. But I knew that was not to be a one-time effort, and that the NMDP needed help from wherever it could find it.
As I learned about the NMDP, one fact struck me extremely hard. For Caucasians in need of a bone marrow transplant, 88 percent find a suitable donor. For African-Americans, that number tumbles to 60 percent.
While any person of any race can be a suitable person for anyone in need, the simple fact is this: ethnicity matters when it comes to bone marrow. A Caucasian person has a much better chance of getting a match from another Caucasian. An Asian person has a much better chance of being matched with another Asian. An African-American has a better chance of being matched with another of African descent.
According to the NMDP, there are just 11 million people on the bone marrow donor registry. And that’s not in the U.S. That’s in the world. In the U.S., there are five million white people on the registry. There are 500,000 blacks. There lies the difference between the 88 percent and 60 percent figures.
This is a call to the black community. The National Marrow Donor Program needs you. And those of African descent need you even more. They are literally dying for a better representation of blacks on the bone marrow registry.
To put a face to issue, let me point to my friend Emru Townsend. In December, Townsend - of Montreal - was told that he had AML, as well as a disorder called monosomy 7. He was told he needed a bone marrow transplant to survive. He was also told that due to his African-Caribbean heritage, his chances of finding a donor were much less than if he were white.
But Townsend did not waste his time with self-pity. He immediately began to champion the cause, and his efforts to get more blacks on Canada’s bone marrow registry have been covered in newspapers, radio and on television. He is a true inspiration, going so far as spending days working to get his message out while he is receiving chemotherapy. And he is still without a matching donor. His site - HealEmru.com - tells his story and has valuable information on how one can get on the bone marrow registry.
“After everything I’ve learned, I just can’t believe that everyone is not on the registry,” said Townsend. “It’s just such an easy thing and it’s so important to so many families.”
In the U.S., one of the reasons for the lack of donors of all races is likely the cost. It costs $52 to get on the registry, but that amount falls to $25 for African-Americans due to the need. But even if an African-American doesn’t have a dime to spare, if they want to get on the registry, they will not be turned away. But this is why donations are always eagerly accepted by the NMDP to help defray the costs of the tissue typing necessary.
The process for donating is simple - all it takes is a few swaps from a person’s inner cheek, filling out some paperwork, and it’s done. If you are called as a potential match, you will be given a battery of tests (free of charge) that will see if you are in good health and able to donate. The donating process consists of taking some marrow from your spine (under local anesthesia) and does not entail an overnight stay in a hospital. Generally, some minor discomfort for a day or two is the full price that has to be paid for saving a life.
For my allies in the POC blogosphere, and anyone else interested in helping, I humbly request that you write about this issue in any way you deem fit. Discuss your thoughts on why blacks are so underrepresented if you like. Discuss the issue from any angle you wish. But please discuss it. And register. And try to get more people of African descent onto the registry. Lives are literally in the balance.
Helpful Links
- The National Marrow Donor Program: Here you will find a plethora of information on the bone marrow registry, including how and where you can register. They can also be reached at 1(800) 627-7692.
- Jes Us For Jackie: Rapper Nelly’s ongoing effort to get African-Americans involved in the bone marrow donor registry. Nelly’s sister died from Leukemia, unable to find a donor.
- Emru Townsend’s site: Townsend has worked tirelessly to create a site that has information on his plight, as well as information on bone marrow drives throughout the U.S. and Canada.
- The Caitlin Raymond International Registry: An International bone marrow and cord blood search and donor recruitment center.
- African-American Community Health Advisory Committee: More information on the need for African-American marrow donors and information on how the process takes place.
– Asians for Miracle Matches: Non-Japanese Asians, Native Americans, and Pacific Islanders are also underrepresented on the marrow donor registry. A3M is trying to change that.
If you have any other questions, such as how to put together a bone marrow drive in your community or anything else, feel free to contact me at wkwolfrum(at)gmail(dot)com.
–WKW
