I first joined the bone marrow donor registry in the early nineties, after reading about a Chinese boy with leukemia who was looking for a match. Back then (and still the case now), Asian donors were rare, and finding a match if you are of Asian ethnicity or hapa unlikely. It’s almost 20 years later after I joined the registry, and while the issues around bone marrow donation haven’t changed much, the available methods to recruit new donors has.
In today’s web-centric world, social networking sites like Facebook have changed the way searches for bone marrow donors can be executed, sometimes with incredible results. The 32 year old founder of Photojojo, Amit Gupta, turned to social networking when he was diagnosed with leukemia and was in need of a bone marrow donor. And there’s no doubt as to why. Gupta has 17,700 followers on Twitter, 13,000 friends on Facebook (plus 422 subscribers) and a strong web presence on Tumblr, Flickr and other social media platforms. Gupta and his supporters have used social networking to spread news about “swab” parties, where potential donors can be swabbed and added to the donor list to see if they are a match.
As an Indian-American, Gupta’s odds of finding a donor are slim, about 1 in 20,000 (compare that with over 90% of Caucasians finding a match in the U.S.). South Asians, like other minorities in the US, are dramatically under-represented in the national bone marrow registry. We’ve discussed on 8Asians previously why Asians are reluctant to be donors of any type and even mentioned Gupta’s search for a bone marrow donor. But what surprised me most was finding out that among those South Asians that sign up to be a bone marrow donor and subsequently match someone looking for a donor, approximately half decline to actually donate when told they are a match.
The reason so many South Asians decline have to do with why they joined the donor list to begin with. Many agreed to be “swabbed” and typed because someone they knew personally, usually a friend or family member needed a bone marrow donation. The prospective donor didn’t match their friend, but instead matched a complete stranger waiting for a donation. Partially because of cultural norms, they declined to give a part of themselves to a complete stranger. So, while we may be getting the word out through new mechanisms like social networking, there’s still a lot of cultural barriers to overcome to help those in need of a bone marrow donation.
While I personally disagree with some of the policies in the bone marrow donation program, specifically around gay men, I still continue to recommend people join the list, especially if you’re a minority or mixed race. I myself joined the list in defiance of the policy against gay men in place at the time I joined. If I match, I plan on being completely up front to any recipient family about my “gay” status, and I’d be willing to submit HIV tests to the recipient and their family. It would be up to them to turn me down as a donor.
I have one final story to relay about bone marrow donors. Last year, my cousin agreed to be swabbed as part of a drive to find a donor for a local patient in his area of the country. Incredibly, he matched, and because the recipient was in the last stages where they could receive a transplant, my cousin cancelled a family vacation with his wife and kids so he could undergo the donation procedure that same week. So kudos to my cousin, and may many of you follow his example. And remember donating bone marrow isn’t as painful or difficult as it used to be, so there’s really no excuse for not finding out if you can be the match.