I’ve been following Janet Liang’s fight against leukemia for nearly a year.
Janet is an incredibly brave, and heartbreakingly young, Asian American heroine who was diagnosed with acute lymphoblastic leukemia in 2009. After a year battling leukemia, Janet went into remission in June 2010, and was cancer-free for nearly a year and a half, during which time she completed her studies at UCLA and became a tutor at a local high school. Recently, however, Janet relapsed and is currently in a fight for her life. She has only weeks left to find a bone marrow match.
Unfortunately, bone marrow donation requires a high degree of genetic similarity between the donor and recipient. Writes Time Magazine:
Compared to organ transplants, bone marrow donations need to be even more genetically similar to their recipients. Though there are exceptions, the vast majority of successful matches take place between donors and patients of the same ethnic background. Since all the immune system’s cells come from bone marrow, a transplant essentially introduces a new immune system to a person. Without genetic similarity between the donor and the patient, the new white blood cells will attack the host body. In an organ transplant, the body can reject the organ, but with marrow, the new immune system can reject the whole body.
Time notes that most bone marrow donor matches occur between a donor and a recipient of the same racial background. Unfortunately, national and international bone marrow registries are populated primarily by registered donors of White racial backgrounds. This means that it can be more than twice as hard (and in some cases, far less likely) for non-White recipients to find a donor match. The Wall Street Journal reports:
While the odds of a white patient finding a match are 88%, the odds for most minorities can be as low as 60%. The odds of actually receiving a transplant are as low as 20% for some minorities because of other factors such as access to care in their communities.
Overall, Asian American patients find a match only 73% of the time (compared to between 88-92% of White patients), but this number drops precipitously within specific ethnic groups that fall under the Asian American group. For example, only 1 in 20,000 South Asian recipients are able to find a match in the national registry.
In short, there is an incredible need to diversify the national bone marrow registries to help address the incredible, and unfair, disparities facing potential bone marrow recipients of colour. Our ongoing apathy in regards to bone marrow registration is absolutely, and demonstrably, hurting communities of colour.
Thankfully, there are several organizations whose sole mission is to reach out to potential donors of diverse racial and ethnic backgrounds; for the Asian American community, they include: AADP, A3M and 100K Cheeks.
Registering to be a bone marrow donor is easy. You can register online with Be The Match (the U.S.’ national registry); registration involves providing your contact information, answering a few generic health questions (height, weight, etc), and requesting a kit be mailed to your home address. The donor kit will contain 4 cotton swabs and instructions for providing cheek cell samples. That sample will be used to type your tissue so that a match can be made.
If you are found to be a match, you will be asked to undergo a more thorough pre-screening test to ensure that you are healthy enough to donate. If you agree to donate, you will do so either through a non-surgical procedure involving the donation of peripheral blood stem cells, or by donation of bone marrow from your pelvic bone. Donation is painless, in most cases non-surgical, and any potential travel costs will be reimbursed (more Myths and Facts about donation here).
I registered as a bone marrow donor back in college, but today I discovered that my registration is not with Be The Match (I could be in another bone marrow registry, or my contact information may not have been updated when I moved).
I just re-registered. You can, too: Act Now! Be The Match.