Thursday, July 05, 2007

Asian? Please Read. Not Asian? Read and Pass along!!!

I am a contributing editor at BlogHer.org. A fellow editor, snigdhasen, who is Indian just posted a moving message about the need for bone marrow from South Asian donors, and listed a few people's stories. The need is URGENT. Here is a direct lift from her article.

In November last year, Vinay Chakravarthy, a 28-year-old orthopedics resident at the Boston Medical Center, was diagnosed with acute myelogenous leukemia (AML), a life-threatening cancer of the blood. A month ago his leukemia relapsed and he was informed that he needed a bone marrow transplant. Vinay's friends swung into action. They approached the National Marrow Donor Program (NMDP) and together they have been organizing donor registration drives across the country. Their target population: South Asians.

The NMDP tells me that a cross-racial match is not impossible, but far less probable. The closer the ethnicity, the higher the chances of a perfect match.

This is where Vinay and his friends hit their first roadblock. Of the over six million registered donors, 415,000 are Asians. That's less than 7 percent. Vinay's website says South Asians form barely one percent of those registered. A press release issued by those conducting the drive for Vinay also states that while a Caucasian has a 1 in 15 chance of finding a match, a South Asian has 1 in 20,000 chance of finding one. (I am waiting for the NMDP to confirm these figures)

Now, that's a significant shortage, given that the Census Bureau estimates the country's Asian Indian population to be 2.5 million. The estimates also say that 49 percent of “single-race Asians 25 and older [...] have a bachelor’s degree or higher level of education. This compares to 27 percent for all people 25 and older.”

So what exactly is all that education doing for us?

For Vinay, the lack of registered South Asian donors was only the first hurdle. Vinay's messages about how he's doing are regularly posted on the website. Here's what happened on June 21:

"Today I found out that I almost had a match. But the South Asian donor(s) is “not available”. I’m utterly devastated. I’d known that Asians as a whole came through with a whopping 60% failure rate (lower than any other ethnic group) to actually agree to the donation process once they were identified as a match, but I thought my match would be that special 40% who would do anything to save a fellow brother’s life.
Among many of the reasons South Asians generally give for declining, some say “their family would not support their donation process”. I have a question for all my Indian brothers and sisters out there: Since when did our families start to come in the way of us helping another fellow human being?? We pride ourselves on having good family values. I ask you now to remember those values that we hold so dear because that is what makes our community so special.”


What's stopping so many South Asian registered donors from following through? In an article about Vinay, ABC News quotes Dr. Galen Switzer of the University of Pittsburgh Medical Center as saying:

We find with Asian-Americans [...]that the decision to donate is not made by the individual. Instead, it's a decision the family will make together. Many donors express concern that their families will not support the idea of donating.


Now Vinay's friends and supporters have made this drive not only about finding a perfect match for him or even increasing the number of South Asian registrants. They want this drive to be about finding committed donors.

Unfortunately, Vinay is not the only South Asian in dire need of a matching donor. Thirty-one-year-old Sameer Bhatia, a Silicon Valley entrepreneur from San Francisco, was diagnosed with AML in May, and needs a bone marrow transplant. His friends and family joined “Team Vinay” and together are trying to recruit committed donors ASAP.

The clock is ticking. Vinay may need a transplant as early as July 20. For that, his search for the perfect match will have to end by July 9. Sameer probably has less than two months for his transplant.

Team Vinay has completed 172 drives (over 10,000 have registered since the drives began), and promises to keep up the effort all through summer. Their website, helpvinay.org, is packed with information about marrow donation, how to register, stories of successful donors and upcoming drives. You will also find information about how pregnant women can help by donating umbilical cords.

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OK folks ..read the full article on BlogHer.org" and let folks know -- chime in with your own blogs by linking in to the BlogHer article at http://blogher.org/node/21833. Let's do what helping good that we can. We are all in this together -- all part of the same human community.

5 Comments:

Blogger Snigdha said...

Hi Mata,
Thanks for doing this. Wanted to mention one thing: Vinay and Sameer are South Asians not East Asians. But that doesn't mean East Asians don't have a problem. Asians in general are lagging in this area.
So if you are Asian (east or south), it's time to take action.
For Sameer and Vinay, the closer to India the donors' roots are, the better!
Thanks again
Snigdha Sen
http://blogher.org/blog/snigdhasen

3:57 PM  
Anonymous Anonymous said...

If you read this research article (or google for Ted Bergstrom and Damien Sheehan-Connor you will find a table showing match-rates for marrow donors by race, for example white donor-white recipient matches are 1 in 11,000 and for different ethnicities much lower matches, for example Asian/African donor-recipient pairs the chance of a match is 1 in 1,310,000 (1 in 15 is a typo in some news articles - should have been 1 in 15,000), among siblings the chance of finding a match is 1 in 4. Vinay would have an increased chance if he specified the caste/community he is from because ethnic and genetic diversity within India is extremely high. What they are actually trying to match is the HLA set of tissue antibodies. It is also important to note that according to a research article by Kanga, Panigrahi et al. Transplant Proc. 2007 Apr;39(3):719-20 "Because the Indian population is characterized by the presence of novel HLA alleles and unique haplotypes (HLA-A*0211, B*2707, A*26-B*08-DRB1*03), patients with rare HLA alleles have much less probability of finding an unrelated optimally matched donor than those with common HLA phenotypes." Here is a quick example underscoring the differences between southern and northern India for tissue matching:
a Tamil population: HLA-A*19: A*33 (45.9%), A*32 (29.7%), A*31 (16.2%), A*30 (5.4%), A*29 (2.7%) and A*74 (0%). North Indians HLA-A*19: A*33 (15.6%), A*32 (8.6%), A*31 (3.5%), A*30 (3%), A*29 (1.2%) and A*74 (0.77%), while in the Japanese population frequencies are only A*30 (0.7%), A*31 (17.6%) and A*33 (11.7%)
ref 1: Tissue Antigens. 2002 Jun;59(6):487-91
ref. 2: Int J Immunogenet. 2006 Apr;33(2):69-72

4:23 PM  
Anonymous Alice said...

Mata,
My husband is a south Indian; I showed him this blog and he began investigating about signing up. Unfortunately as he's past 60 he's not eligible, but he did send out an appeal to all the younger of his family in the U.S. We were happy to learn that one of them, a nephew, is already registered. This is the way to spread the message.

11:46 AM  
Anonymous Birdie said...

Mata, what a fascinating and sad article. I am hopeful that your words will inspire people to get the word out in the Asian community. You're doing a great service by posting this.

11:35 AM  
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