just a question for anyone out there to answer...

are vinay's genetic markers being tested against bone marrow registries in india, or just america? i know they are testing his family in india, but what about the general indian registry?

poor guy, wish him all the best.

OSN,

There is no such registry in India and when an Indian kid is looking for a marrow match this registry is the only resort. [HelpVinay.org]

thanks SMI, i didn't see that. this is outrageous to me...

i did a simple google search and found this very interesting article about india's lack of a bone marrow registry and how one american couple actually started an ad hoc one....sorry if this has been covered before on SM, and i hope no one minds me posting the link and this article (the issue seems to boil down to supply and demand in india):

http://www.wired.com/medtech/genetics/news/2007/03/MATCHPIA

Homebrew Site Becomes India's Bone Marrow Registry
Scott Carney Email 03.26.07 | 12:00 AM

CHENNAI, India -- India's first national bone marrow registry is a homegrown website thrown up to save a woman's life.

An American couple launched India's first national registry after a similar site saved the life of Pia Awal, who nearly died of leukemia in 2004 while she waited for a bone marrow donation.

Instead of gambling on the slim chance of finding a donor at the U.S. National Marrow Donor Program, she and her husband created a website called MatchPia to attract other South Asians more likely to match her genetic profile. The site recruited more than 33,000 South Asians and saved Awal's life.

Now, the couple has taken their efforts to India (click Project India button on left), a country that had no bone marrow registry to speak of.

"The closest thing to a national registry in India was two stacks of papers in Delhi and Mumbai of people who had given marrow in the past," Tim Dutta told Wired News. "They were unsorted and completely useless."

Since launching MatchPia, Dutta has recruited 4,100 potential donors in India and 69 people have found matches.

The program is in its early stages, but if it catches on like its American counterpart it could save many more lives in India.

Now, only about 800 patients find viable bone marrow matches in India, almost always through relatives.

Indian officials say 6,000 people in the country need bone marrow transplants -- a tiny number compared to 35,000 in the United States. But if diagnosis improves in India, the number would likely be much higher.

"Being that most patients in the villages and rural areas aren't even diagnosed or in most cases misdiagnosed for leukemia and blood-related cancers, it seems realistic," Dutta said. "Because these diseases are very expensive to treat for the average commoner, the real diagnosis is really swept under the rug."

Awal and Dutta began their quest to recruit bone marrow donors in 2004 when doctors told Awal she had a 1 in 28 million chance of finding a match because so few people of South Asian descent register to donate bone marrow in the United States.

The genetic variations that have evolved along geographical lines make it difficult to find matches among donors of different ethnicities. Until recently, campaigns for adding to the marrow registries have focused more on sheer numbers rather than genetic background.

The average Caucasian who registers with the National Marrow Donor Program has a 1 in 20,000 chance of finding a compatible donor -- much better odds. Many Caucasian patients have the luxury of picking and choosing between potential donors.

Facing terrible odds, the couple launched MatchPia. Awal found a donor and was soon in remission. A little more than two years later the site received 1.7 million visitors and 33,000 South Asians registered with the national marrow program.

A representative from the U.S. registry said program organizers are tying to attract donors from various ethnicities.

"The most positive aspect of MatchPia's presence as a recruitment group is adding more donors and creating opportunities for more patients (who are) searching," said Regan Hall Reinerth, manager of public relations at the U.S. National Marrow Donor Program. "We are working very hard to add more donors every day from diverse audiences."

A former Wall Street consultant, Dutta quit his day job to commit full time to the bone marrow effort. He persuaded corporations across India to launch recruitment programs and convinced hospitals and pharmaceutical companies donate money and lab work.

"There is no major registry of unrelated donors in India, so the only transplants we have been able to do have been through siblings," said Dr. Raja Thirumalairaj, senior consulting physician at Apollo Hospital in Chennai. "But when they don't match, which is most of the time, we look internationally. I have only had one patient who was able to find a match through them so far, but perhaps as things gain momentum that, too, will change."

I wasted no time in registering after the last heartfelt SM bone marrow registry drive. After being motivated by the immediate tone of that particular plea, I was disappointed to see that there wasn't any follow-up coverage here, and deeply saddened to only just learn that little Nirali had passed away over a month ago.

The original post ended with a firm:

Go. Give a tiny part of your physical self. And then pray, if you are inclined to do so, that we follow-up this post with some joyful news.

Following up with any news would have been nice, especially for those of us moved to action by the last emotionally-fueled drive. If there was a follow-up post on Nirali, then I didn't see it and couldn't find it in the archives.

I sincerely hope that things work out for Vinay.

Project 37:

I am very sorry. I post what I can, when I can. Others could have covered it, too, had someone sent in a tip. No one "owns" a topic, all of us are allowed to follow-up. Beyond that, this is a blog, not a newspaper; it's ad-hoc, not organized. We don't track or assign stories.

That's why we depend on all of you so much, to help us out by sending stuff in or better yet, posting it on the news tab, which was created for exactly this situation. If we didn't cover something (and omission is not a statement of anything here, other than a lack of time) then any reader is able to post a story there, to make sure the community knows about it.

You are clearly disappointed that we didn't post the heartbreaking news about Nirali and I feel bad for that. I only found out about her end when I was writing Vinay's post a few days ago.

Despite the loss of Nirali, I hope people are not discouraged from becoming a part of the database. I also encourage you to really commit to saving a life; if you have doubts, don't register and then back out later.

Hey Anna,

Thanks for the response. Believe me - I understand that SM is not a full-time job for the team, and that it doesn't operate like a newspaper-style publication. It's not as if I personally followed up on that particular story, either. I read the post about her last summer, was moved, went in to submit a swab, and went on with my life. To be honest, I don't know if I would have necessarily thought about her again were it not for the similar tone of the Vinay post. I think that perhaps my disappointment was really more about Nirali's story not having a happy ending. Sad to see that no news isn't always good news.

That said, I'm glad that you put these posts out there to call attention to a very important topic. I'm a card-carrying member of the registry, which is something that wouldn't have happened had it not been for this site. So, thanks for that. :)

-Brian

Is that Meera and Ravi (aka Bug?)

ANNA:

Thank you for this follow-up post on Vinay. I wasn't expecting it but, we can't tell you how much it means to us that SM is giving the effort & struggle so much blogspace. I am convinced Sepia Mutiny is the new & revolutionary seedbed of community organizing within the internet-based South Asian community. (But more on that another time).

The post & comments from your last post on Vinay resulted in a number of offers to help organize drives nationwide. Thank you to everyone who reached out. If you are just getting to this story, please join the effort. We can use your help.

I am so sorry to hear about baby Nirali. I, too, was so moved by that post many months ago. I also truly hope that news like that fuels a collective fire amongst brownfolk to step it up and get registered. If Anna's posts haven't drilled it into you deeply enough, maybe its worth repeating:

Today, if a Caucasian needs a marrow match, s/he averages 15 hits in the NMDP Registry.
A South Asian averages 1 or, worse, 0.

Please. Get registered. A 2-second cheek swab can save someone's whole life.

We've got at least 2 DC drives slated so far (see www.helpvinay.org for more details) and one in MD June 17th weekend. DC/MD/VA-based folks (especially those who are well-connected in the brown community!) who can help out, please email Seema at indiaseema@hotmail.com. The more hands & hearts we have on board, the more likely we are to find a match for Vinay.

Hey kiddos,

I've got a booth at the A.R. Rahman concert on June 8th - Friday - 9 pm at the Reliant Arena in Houston. I could really use some help volunteering - we're going to be doing tissue swabs on-site to send to the registry, and I need to print a bunch of flyers and get a big banner/ other propaganda for this event. I only have five days to get this pulled together. If you can come help me out, or help with printing flyers or designing/creating a banner/etc., please let me know - roopa.vasan@gmail.com.

All of you rock for giving your time and energy. It's only after this happened that I realized the power of our community.

Yes, Meera and Ravi, and Shelley Malil. I directed this PSA, and I'm hoping desperately that Vinay finds a match.